Communication in Palliative Nursing PDF
Communication in Palliative Nursing PDF
Communication in Palliative Nursing PDF
Palliative Nursing
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Communication in
Palliative Nursing
Elaine Wittenberg-Lyles
Joy Goldsmith
Betty Ferrell
Sandra L. Ragan
1
1
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iv
contents
Foreword vii
Nessa Coyle
Preface ix
Acknowledgments xvii
2. Communicate 23
4. Mindful Presence 93
5. Family 119
6. Openings 151
7. Relating 187
8. Team 225
Index 273
v
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foreword
Nessa Coyle
vii
viii foreword
The field of palliative care espouses the importance of interdisciplinary care, and this
book is a product of the blending of disciplines. It began in 2010 when two scholars
with doctoral degrees in communication (Elaine Wittenberg-Lyles and Joy Goldsmith)
approached a palliative care nurse researcher and educator (Betty Ferrell) to suggest
that perhaps a different paradigm should be applied from their field of communica-
tion to understand and advance the concept of communication in palliative nursing.
Through their innovative and provocative research in areas such as communication
in hospice settings and interdisciplinary team meetings, Wittenberg-Lyles, Goldsmith,
and their mentor, a senior scholar in health communication, Sandra Ragan, began to
question existing thought and literature related to communication in palliative nurs-
ing. Thus began the collaboration that led to this book and a new way of approaching
the essential concept of communication in palliative nursing.
The chapters of this book are organized according to the elements of the commu-
nication model, COMFORT, developed by these communication scholars (Ragan,
Wittenberg-Lyles, Goldsmith, & Sanchez-Reilly, 2008; Wittenberg-Lyles, Gee, Parker
Oliver, & Demiris, 2009; Wittenberg-Lyles, Goldsmith, Demiris, Parker Oliver, & Stone,
2012; Wittenberg-Lyles, Goldsmith, & Ragan, 2010; Wittenberg-Lyles, Goldsmith,
Ragan, & Sanchez-Reilly, 2010; Wittenberg-Lyles, Goldsmith, Sanchez-Reilly, & Ragan,
2008). Each element is described in detail with supporting communication theory,
empirical support, clinical evidence, and case examples. Collectively these elements
challenge the notion that communication is simply sending and receiving information
or that communication in palliative care is limited to breaking bad news. The intent
of this book is to present the COMFORT model as a more honest representation of
communication in palliative nursing. Through application of the model, our hope is
to improve the care of patients and families while advancing our professional practice.
In much the same ways that we move from novice to expert palliative care nurses by
refining our skills in symptom assessment, care of the physical body, pain management
practice, or grief interventions, we also become expert practitioners through develop-
ing proficiency in communication (Dahlin, 2010).
A critical reality, reinforced in this volume, is that no aspect of expert palliative
nursing practice can be realized without proficiency in communication. Pain manage-
ment requires skillful communication to assess the patient’s pain, identify and over-
come fears of addiction, and provide information about optimal use of analgesics and
management of side effects. Similarly, compassionate, skillful listening to the family
caregiver’s grief, hearing the depth of his or her emotion, and responding verbally and
nonverbally with communication that validates the loss and the suffering of the loss
ix
x preface
are key to quality palliative nursing care. For every aspect of palliative nursing care,
communication is not only key, but it is also the foundational substance upon which
other critical nursing practices depend.
The field of palliative care is by its very nature fraught with factors that challenge
the goal of supportive structures and processes. Palliative care is complex, multidi-
mensional, and is concerned with care in the most intimate and intense weeks of life.
Palliative care requires multiple disciplines, settings, transitions, and enormous cul-
tural variation. Quite often, the well-intended professionals working in this field may
believe that effective communication will just happen because, after all, we are com-
passionate and dedicated clinicians. But the reality is that effective communication will
not happen unless the structures and processes of care within an organization support
communication.
Technological advances such as electronic medical records, cell phones, e-mail,
Skype, and a host of other electronic means can greatly facilitate communication or
conversely create significant barriers to communication. The challenge is for adminis-
trators and managers in palliative care settings to seriously consider the ways in which
policies and procedures can best support effective communication.
Ellington and colleagues (Ellington et al., 2008; Ellington, Reblin, Clayton, Berry,
& Mooney, 2012) have recently studied the interactions and communication between
hospice nurses, patients, and families through audio recordings of these visits. Their
initial findings have described how nurses devote the majority of their communication
to topics of physical care. The recordings revealed many encouraging findings such
as the tendency for nurses to devote substantial time to building partnerships with
family caregivers and patients. Nurses also were flexible and adaptive, altering their
communication to the changing circumstances of patients and families as the disease
progressed. Ellington and colleagues are continuing their research in nursing commu-
nication, which will identify areas needed for more effective communication. Their
research and others will help identify structures and processes of care that best support
nurses in effective communication.
QOL
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xv Preface
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acknowledgments
Though the sparkle of an idea for this collaboration emerged in a hotel room in
Lexington, KY, it was the gracefully, generously, and deliciously appointed Italian
meal in the home of Michael A. Mollica that brought us together. The authors are
also deeply thankful to our editorial assistant, Andrea Garcia, who worked with us
throughout every step of this manuscript. Her expert eyes and attention to detail were
the secret ingredient to success.
xvii
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Communication in
Palliative Nursing
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1
defining and understanding
communication
I am already a good communicator—what can you teach me? One of the problems
communication experts encounter in attempting to teach effective communica-
tion is this: everyone already knows what good communication is, and many people
believe that communication skills are innate, much like the hardwired ability we are
born with that enables us to acquire and to understand language. Yet communication
researchers have unearthed a number of myths that are popularly held about what
constitutes good communication, even about the definition of “communication” itself.
For example, a commonly accepted definition of effective communication is the trans-
mission of information—what is in the speaker’s head gets somehow magically trans-
ported to the listener’s head so that both agree about the content of the message.
What we suggest in this chapter and throughout this text is that communication is,
instead, the mutual creation of meaning by both communicators.
This revised definition has rich implications for all of us but particularly for palliative
care nurses as they communicate with a host of audiences: physicians, patients, family
members, interdisciplinary palliative care team members, and fellow nurses. Seeing the
act of communicating as mutually creating meaning rather than transmitting informa-
tion implies that the traditional roles of speaker and listener (also termed sender and
receiver) do not really make sense. Both communicators are speaking and listening, send-
ing and receiving, in any communication event. Further, both communicators are mutu-
ally and reciprocally influencing what the other party will say next or how he or she will
react nonverbally. Let’s look at an example of how mutual influence works when a nurse
asks her dying patient about how the family is dealing with her impending death:
1
2 communication in palliative nursing
care. They have an excuse now. I was not the most popular person in my
family. I’m the oldest, and I’ve always had to do the most, and sometimes it
put me in an unpopular position. I was the tattle-tale. Mommy and Daddy
expected me to report everything. (Wittenberg-Lyles, Goldsmith, Ragan,
& Sanchez-Reilly, 2010, pp. 69–70.)
In the example above, both nurse and patient affect the other’s communication beha-
vior. This may appear a simple notion, yet it has profound implications: how we
communicate (what we say verbally and nonverbally) significantly influences com-
munication effectiveness. Analyzing the conversational exemplar above reveals how
the nurse’s responsiveness to her patient’s communication results in repetition of her
advice (“you might need to bring it up”). This is offered after the patient’s truncated
admission that her family is afraid and then a lengthy pause: taking into account
the verbal utterance of the patient and the long pause, the nurse repeats her advice.
The patient’s next utterance is an elaborated response to the nurse’s original ques-
tion about how her family is doing. The patient has modified her original response,
perhaps because the nurse’s repeated advice has freed her to disclose fully her family
situation. The nurse now has a deeper understanding of this patient’s limited social
support as well as how she sees herself in relation to her family. Knowing this may
prompt the RN to consult the social worker on the palliative care team.
This mutual influence model of communication (rather than the traditional
sender-receiver model) means that both parties are simultaneously and reciprocally design-
ing (encoding), delivering (both verbally and nonverbally), and interpreting (decoding)
messages: both are creating the meaning of each other’s messages. It also means that both
speaking and listening are critical communication skills—for nurse and patient alike.
Epstein and Street (2007) note in their book on communication skills for
patient-centered cancer care that clinicians and patients constantly influence each oth-
er’s communication in ways that facilitate more effective patient care. For example, a
patient can use such active communication strategies as asking questions, interrupt-
ing, and expressing concerns in an attempt to elicit more interest and more inquiry
from the clinician. Concomitantly, if a patient appears passive, clinicians can use facil-
itative behaviors (e.g., asking for the patient’s opinion and concerns, offering encour-
agement) that might elicit more patient involvement. This is because the clinician’s
communication “both legitimizes and specifically asks for the patient’s views” (p. 6).
Note how this mutual influence might function in a palliative care context:
patient: Yeah, well I’d say it’s about a “4” this morning, so I guess that means
that the new meds are working some.
nurse: Going from “6” to “4” is in the right direction, and I’m glad your pain
is less severe, but I think a “4” is still too high. I’d like for us to get your pain
down to a “3” or lower. We will work to get the dosage exactly right for you
so that your pain will not be more than a “3.”
patient: I’m still worried that I won’t get enough pain medicine to control
my pain.
nurse: I’ll increase your pain meds today to make sure that you’re receiving
enough medication to keep your pain at a level of “3” or less. That is our
number one priority in caring for you: to make you as comfortable as we
know how to do.
In the above example, the patient first appears passive, giving only minimal responses
to the nurse’s questions about her pain level. When the nurse tells the patient that she
wants to know the number of the patient’s pain level in order to gauge whether the
new meds are working so that her pain can be better controlled, the patient gives a
more elaborated response. After the nurse’s next empathic response and her assurance
that they’re working to deliver the right dosage, the patient apparently feels trusting
enough to disclose that she’s still worried about not receiving enough pain meds to
control her pain. Can you imagine how this conversation might have played out had
the nurse not asked more questions of the patient or had she not expressed empathy for
the patient’s situation? Worse yet, what would have been the possible consequence
of the nurse’s replying to the patient’s telling her that the pain was “a little better”
today: “Oh, okay, well that’s good to hear”? It’s probable that this remark would have
ended the conversation abruptly, that the patient would not have felt any empathy
from the nurse, and that the patient’s fears about not receiving enough pain meds
would have gone undisclosed.
Of course, the verbal messages in this dialogue between patient and nurse are made more
complex by both communicators’ nonverbal messages—messages that are constantly and
often unwittingly being conveyed along with their words. The next section of this chapter
will discuss the preeminence of nonverbal communication as it affects the patient care (or
task) and the communication climate (or relationship) between nurse and patient.
COMMUNICATION AXIOMS
Two central laws or axioms of communication (Watzlawick, Beavin, & Jackson, 1967)
recognize the critical importance of nonverbal communication in every communica-
tion context, personal or professional:
(1) One cannot not communicate. While this verity may appear simplistic, it
reminds us that it is impossible not to be sending messages when we are
interacting with another. All of our words, gestures, facial expressions, gaze,
touch, and tone of voice communicate loudly. Even our silence is profoundly
communicative. The person we are talking to will attribute meaning to silences,
4 communication in palliative nursing
While the content level of a message is conveyed by the words themselves, the rela-
tional level generally is manifested by nonverbal communication. We are often una-
ware of the nonverbal messages we are communicating—we don’t hear our tone of
voice or see our facial expressions or appreciate what touch, distance, and timing
might be communicating to the other. Yet our nonverbal messages are powerful in
communicating meaning and relationship; according to an eminent psychologist,
Mehrabian (1981), nonverbals communicate three dimensions of relationship-level
meaning: power or influence, affection or liking, and responsiveness or attentiveness
or inattentiveness to others.
Not only does nonverbal communication help communicators interpret their mes-
sages and assign relationship cues; it is also preeminent because most of the mean-
ing of a message (some researchers says as much as 80%) is communicated through
nonverbal means, not through words. This may be because we believe that nonverbal
communication is more credible than verbal communication and that nonverbal com-
munication is not under our conscious control as much as verbal communication and
is thus more believable. We also know that when verbal and nonverbal messages con-
tradict each other (or are incongruent), we are much more likely to believe what the
nonverbal messages are telling us. For example, in the above conversation, the nurse’s
verbal communication (“How are you feeling today?”) appears to exhibit her genuine
5 Defining and Understanding Communication
concern for the patient and her need for this information in order to facilitate the
patient’s care. But if she asks this question as she reads the patient’s chart, failing to
make any eye contact, the patient is likely to believe that the nurse is uncaring. That
is, the patient attributes meaning to the interaction by believing that the inattentive
nonverbal messages are more telling than what the nurse says. For this reason, it is
imperative that we bring our nonverbal communication into conscious awareness and
that we attempt to make what we say and how we say it match.
NONVERBAL CODES
Nonverbal communication has been defined as all those behaviors other than words
themselves that form a socially shared coding system (Burgoon, 1994). That nonver-
bal communication is “socially shared” assumes that people recognize (decode) the
meaning of nonverbal behaviors within their social/cultural settings, though it does
not imply that nonverbal communication is necessarily universal in its meaning. We
all have heard jokes about how leaders of state traveling abroad unwittingly have used
a nonverbal sign (such as making a “V” with the index and third fingers) to signify
“victory,” only to learn that this sign communicated an obscene expression in the cul-
ture in which they found themselves. Yet it is also true that some nonverbal behaviors
are understood cross-culturally—for example, smiling generally means the same thing
across cultures (Afifi, 2007).
To complicate the nonverbal picture further, communication researchers divide
nonverbal communication into seven different codes or forms (Afifi, 2007). All seven
of these codes can be sending messages simultaneously, or only one or more codes can
be utilized. The seven codes—kinesics, haptics, proxemics, physical appearance, vocal-
ics, chronemics, and artifacts—are described in the next section.
Kinesics involves every form of movement of the body, including gestures, eye con-
tact, and body position. Kinesics is particularly important in health care contexts as
affect (or emotional) displays—body movements that express emotion without the
use of touch or verbal accompaniment. Many kinesic gestures are understood across
cultures; for example, sadness is expressed by constricting the eyes and forehead region,
flattening the cheeks, and showing a slight downward curve of the mouth.
Nonverbal immediacy, which is a cluster of nonverbal behaviors that communi-
cate how much one is involved in the interaction, is a concept that has been shown
to be effective in many professional contexts. It involves several kinesic channels (eye
contact; body orientation—toward or away from the other; body lean—forward or
backward; and head nods) as well as behaviors from other nonverbal codes: inter-
personal distance (proxemics) and touch (haptics). Immediacy is a critical concept in
health care interactions as it demonstrates how physically and emotionally accessible
the health caregiver is to the patient—changes in the level of immediacy will dramat-
ically affect interaction outcomes. For example, if the nurse in the previous interac-
tion is reading the patient’s chart while she inquires about how the patient is feeling,
this will show nonimmediacy, or lack of involvement to the patient and may elicit a
delayed or minimal response. On the other hand, if the nurse asks the same question
6 communication in palliative nursing
and accompanies it with eye contact, a forward body lean, and a touch of the patient’s
hand, the patient might respond more completely, interpreting the nonverbal com-
munication as indication that the nurse is fully involved in the interaction. Nonverbal
immediacy is an excellent example of the concept of mutual influence in communi-
cation. It will be further detailed later in this chapter when the COMFORT model is
introduced and also will be discussed at length in Chapter 2.
While not as elaborated as kinesics, the other six nonverbal codes include:
Haptics—the use of touch, which in professional contexts can be task related but
can also convey relational messages of warmth and caring. This is, of course, a
critical component of palliative care.
Proxemics—the way we use space and distance. As nurses, it is generally accept-
able to invade a patient’s “personal bubble of space” whereas this might be con-
sidered offensive and inappropriate in other contexts. However, personal space
remains an important element to be assessed by nurses and respected.
Physical appearance—includes body type and clothing, both of which influence
perception. A nurse’s unprofessional appearance communicates an important
image to patients. Nurses similarly develop perceptions about patients based on
their physical appearance—this may be the first “red flag” to nurses signaling
potential depression or other psychosocial needs.
Vocalics—include all aspects of the voice—volume, pitch, accent, rate of speech,
pauses, tone, and so on. The way we use our voices communicates loudly on
a relational level. Communication accommodation theory suggests that we
moderate our speech and vocalics to either be similar to (to converge with)
or be different from (to diverge from) the person to whom we’re talking. That
is why MDs and nurses who use medical jargon—or who talk to patients in
a condescending tone of voice—are perceived as distancing themselves from
their patients. And, of course, patients perceive this distancing as relationship
distancing, believing that the caregiver is not emotionally accessible to them.
Chronemics—the use of and perception of time. If nurses devote only minimal
time to talk with a patient, if they only take the time for administering medica-
tions and procedures rather than stopping to hear patients’ concerns and fears,
they are likely perceived as uncaring. The gift of time is vital not only to our
close interpersonal relationships but also to our patients and to other health
caregivers. While time is very limited in most clinical settings, even a few min-
utes devoted to active listening and presence can make an enormous impact.
Artifacts—the presence of physical and environmental objects. Nurses are often
physically separated from their patients by objects in the patient’s room: bedrails,
bedside tables, medical equipment, and the like. Such barriers can reduce emo-
tional connection or relationships unless the nurse intentionally employs those
nonverbal behaviors that promote immediacy: for example, touch, pleasant
tone of voice, and sustained eye contact while seeking to eliminate artifacts
when possible. A nurse sitting for a short time at the bedside versus standing at
a distance and separated by bedrails can greatly impact communication.
7 Defining and Understanding Communication
If we look again at the dialogue on pages 3–4 and insert appropriate nonverbal
communication (in brackets) to complement the words used by the nurse, we see dra-
matic changes in the effectiveness of the nurse’s questions and responses:
nurse: How are you feeling today? [walking to patient’s bed as she asks this
question and pulling up a chair at patient’s bedside]
(lengthy pause before patient responds)
patient: Same as yesterday.
nurse: When we talked yesterday, you mentioned some pain in your upper
abdomen. You said it was a “6”—has it gotten better? [asked in a caring
tone of voice]
patient: A little.
nurse: What number would you give it today? I’d really like to know whether
you think the new medication is working better. We want you to be as pain
free as possible. [lightly touching patient’s hand]
patient: Yeah, well I’d say it’s about a “4” this morning, so I guess that means
that the new meds are working some.
nurse: Going from “6” to “4” is in the right direction, and I’m glad your pain
is less severe, but I think a “4” is still too high. I’d like for us to get your
pain down to a “3” or lower. We’ll monitor your pain very closely and will
work to get the dosage exactly right for you so that your pain will not be
more than a “3.” [said with sustained eye contact and with an encouraging
tone of voice]
patient: I’m still worried that I won’t get enough pain medicine to control
my pain.
nurse: Can we talk a little more about why you are worried? [With this prob-
ing question, conversation can ensue that attempts to discover the source
of the patient’s fears about inadequate pain control. Throughout the con-
versation, the nurse will sustain eye contact, speak in a gentle, reassuring
tone, and lightly touch the patient if this seems appropriate.]
I’ll increase your pain meds today to make sure that you’re receiving enough
medication to keep your pain at a level of “3” or less. That is our number one
priority in caring for you: to make you as comfortable as we know how to do.
Equally important in the interaction is the nurse’s attentiveness to the patient’s non-
verbal responses. We’ve already mentioned that a perceptive nurse will note the lengthy
pause that occurs after she asks how the patient is feeling today. If the patient’s eventual
response (“same as yesterday”) is said in a wooden tone of voice and/or if the patient
mutters this without establishing eye contact, this should alert the nurse that she must
continue to probe gently in order to communicate to the patient that she really cares.
Later in the dialogue when the patient discloses that she’s worried about not getting
enough pain medication, the nurse should also be responsive to accompanying non-
verbals (e.g., frowning and other facial expressions) that further communicate the
patient’s fear and concern.
8 communication in palliative nursing
Teaching—A sample quotation illustrating this role was: “You help them figure
out what they’re going to do about comfort, pain control, spirituality and help
them maximize their days” (2009, p. 406). Task is communicated in that nurses
are preparing patients and their families to make informed decisions, including
those regarding symptom management. Relationship is interpreted by patients
and families as they receive nonverbal cues from the nurse’s tone of voice, her
use of touch, and eye contact.
9 Defining and Understanding Communication
Caring—A sample quotation illustrating this role was: “I talk about the hard stuff
with them. Sometimes I put an arm around them and say, ‘I am so sorry for what
you have to go through. What can I do to help you?” (2009, p. 406). Task and
relationship are communicated simultaneously in the act of caring. Note that the
“hard stuff” gets talked out (task) while the nurse uses touch (an arm around the
patient) to communicate her emotional accessibility and concern (relationship).
Coordinating—A sample quotation illustrating this role was: “We have to be dip-
lomatic and work with the whole team, I mean everyone from environmental
services to chaplains to pharmacy, everyone. It’s a big difference when we’re all
working together” (2009, p. 406). Again, in performing the role of coordinating,
nurses must attend both to task—that is, getting everyone to work together—
and relationship—communicating diplomatically and carefully with each team
member as well as with the patient and his/her family.
Advocating—A sample quotation illustrating this role was: “So we have to advo-
cate for patients and bring up these [needs] to doctors” (2009, p. 406). Advocacy
is obviously the primary task of communication in this role, yet, because of
the sensitivity of talking to patients, their families, and medical staff about
patients’ and families’ quality-of-life (QOL) issues, nonverbal communication
that signifies relationship must also be chosen with care and appropriateness.
Mobilizing—A sample quotation illustrating this role was: “We assess them and
try to bring help into [the care situation] as much as we can” (2009, p. 406).
Responding to patients’ and families’ changing needs requires task communi-
cation that is “attentive, assertive, and resourceful” (p. 406). Yet mobilizing also
relies on nonverbal communication that is congruent with these messages and
that exhibits a caring relationship.
The attribute of presence is, of course, all about relationship: described as “calmness
or peacefulness” and “spiritual and existential connection” (2009, p. 407), presence
is that quality that makes patients and their families feel that their nurses are there
for them. “Listening carefully,” “speaking last,” and “making people feel cared about”
were all listed as examples of presence (p. 408). One nurse saw presence as caring as
she stated: “Palliative always comes with care behind it, which means we’re able to take
the care path rather than focusing just on all the nursing tasks that have to get done”
(p. 408). Surely this nurse understands the nexus of task and relationship.
The task and relationship dimensions of the five roles of palliative care nursing
and the corresponding seven professional attributes that nurses exhibit in these roles
are further supported by Epstein and Street (2007), who discuss six functions of
patient–clinician communication in their book on patient-centered communication
in cancer care. These six functions include:
As do the nurses’ roles and attributes, each of these functions involves both task
and relationship goals and, concomitantly, task and relationship communication in
order to achieve these goals. Epstein and Street (2007, p. 4) further provide examples
of patient-centered clinician communication:
NONVERBAL BEHAVIORS
x Maintaining eye contact
x Forward lean to indicate attentiveness
x Nodding to indicate understanding
x Absence of distracting movements (e.g., fidgeting)
VERBAL BEHAVIORS
x Avoiding interruptions
x Establishing purpose of the visit
x Encouraging patient participation
x Soliciting the patient’s beliefs, values, and preferences
x Eliciting and validating the patient’s emotions
x Asking about family and social context
x Providing sufficient information
x Providing clear, jargon-free explanations
x Checking for patient understanding
11 Defining and Understanding Communication
x Offering reassurance
x Offering encouragement and support
There is remarkable similarity between these listings and the five roles and seven
professional attributes of palliative care nurses outlined by Pavlish and Ceronsky
(2009). All of these authors describe ideal patient–clinician communication, particu-
larly when that patient is suffering from cancer or another life-threatening illness: it is
communication characterized by an alignment of verbal and nonverbal messages that
are directed to treating both the patient’s physiological and psychological concerns,
not to merely treating the patient as his/her disease.
These principles find their theoretical roots in patient-centered care and also in the
narrative medicine movement (Charon, 2004). Narrative medicine, which subscribes
to our communication model of mutual influence and coconstructed conversational
outcomes, privileges and values the stories of both patients and clinicians. It is intrinsic
to the practice of palliative care in that the founder of the modern hospice movement,
Dame Cicely Saunders, listened to and collected the stories of illness and suffering of
more than a thousand of her dying patients. Through these stories, she developed a
more expansive understanding of pain so that she came to see pain as not merely phys-
ical but also psychological, spiritual, and existential (Saunders, 1967). Because palli-
ative care nurses must address all these aspects of pain in their patients, and because
listening to patients’ and family members’ stories is fundamental to clinical practice,
we believe that a narrative approach to palliative nursing is a pivotal place of conver-
gence between clinical and communication studies (Wittenberg-Lyles, Goldsmith, &
Ragan, 2010).
The COMFORT model (Table 1.1) is thus offered to assist nurses in their practice
of narrative nursing and patient-centered communication in end-of-life care. The fol-
lowing section will briefly describe the seven principles of COMFORT—communicate,
Communicate
A detailed discussion of this principle is found in Chapter 2. Communication describes
behaviors that constitute a narrative nursing approach, namely, the use of verbal
clarity and nonverbal immediacy (sustained eye contact, forward lean, nodding to
indicate understanding, avoidance of fidgeting). Both of these behaviors exemplify
a patient-centered approach to care: using language that is clear, unambiguous, and
understandable not only communicates more accurately but also communicates more
compassionately; likewise, using congruent nonverbals that signify physical and emo-
tional accessibility (i.e., nonverbal immediacy) conveys empathy, support, and under-
standing to patients.
Practice Example
A nurse must explain to a patient and his family the typical side effects of a round of
chemotherapy that the patient will soon undergo.
Communication Behaviors
The nurse first tries to elicit the patient’s understanding of and concerns about his
chemotherapy (narrative nursing approach). She uses language that is free of medical
jargon and that is direct and unequivocal (verbal clarity) while maintaining sustained
eye contact with the patient, leaning toward him, and nodding after he has spoken
(nonverbal immediacy). As a result, the task of the encounter (giving information) is
achieved with relationship warmth and caring. The patient and his family perceive that
the nurse is concerned with his overall quality of life, not just with the physical effects
of the chemotherapy.
nurses must serve to support and nurture health literacy. A patient’s vulnerability due
to her incomplete understanding of her disease and its projected course, available treat-
ment options, and involvement in research protocols needs to be acknowledged and
addressed so that the patient can receive optimal care—as well as care that is self-selected.
Helping patients and their families articulate and prioritize health care goals and then
helping them implement such goals with a pathway of care are paramount.
Practice Example
A very elderly (and thus marginalized) patient must make a decision to have heart sur-
gery that carries significant risks. The palliative care nurses assess her health literacy as
extremely limited and yet must explore the surgical option with her and help her find
an optimal pathway of care.
Communication Behaviors
Using the same verbal and nonverbal behaviors as described above (under
“Communicate”), the nurse must first be completely aware of the patient’s vulner-
able status and then must attempt to educate the patient about the risks that surgery
would entail. With the patient’s and family members’ assistance, the patient’s goals
of care must then be determined, and the full range of options—curative and palli-
ative—must be explored. The primary task of this encounter (helping to educate the
patient and establish a pathway of care) is thus achieved with empathy for the patient’s
limited health literacy and the use of verbal clarity and nonverbal immediacy to estab-
lish rapport and support (relationship).
Mindful Presence
A detailed discussion of this principle is found in Chapter 4. Mindful presence involves
those psychological attributes of staying in the moment, refusing to prejudge patients,
families, and ensuing interactions, and adapting to rapid changes in these interactions.
Staying in the moment entails a reduction of self-talk and predetermined scripts; the
nurse is willing to operate without a script as she recognizes the complexity of the
end-of-life situation and the need for adaptation and spontaneity. As Wittenberg-Lyles,
Goldsmith, and Ragan (2010) describe it, “characteristics of mindful self-monitoring
include an ability to describe your inner experience, adopting more than one perspec-
tive, openness to possibilities, curiosity, and attentiveness” (p. 287).
Practice Example
A palliative care nurse is making a routine visit to an elderly female patient who resides
in a group home. He is aware that the patient is dying of heart disease, but recalling that
she appeared content and physically stable when he saw her last week, he anticipates a
routine, quick visit. When he arrives, he finds the patient sitting alone in a dark room,
15 Defining and Understanding Communication
appearing withdrawn, and ignoring the nurse’s presence. The patient responds with
only minimal utterances to the nurse’s questions, yet she does not report any pain.
Communication Behaviors
Since mindful presence is as much a psychological attribute as a communication
behavior, this nurse must adopt a mindset that permits him to quickly adapt to the
situation: it is not as he expected. While it might be tempting to judge his patient as
depressed given her behavior (after all, she is in a comfortable family setting and is
not experiencing physical pain), mindfulness entails a complete lack of judgment and
a willingness to adapt to the patient’s interaction needs. In this case, narrative nurs-
ing comes to the forefront, for the nurse must try to elicit the patient’s story: what are
the causes of her sadness? What has changed since his visit with her last week? In the
course of their interaction when the patient complains that she feels imprisoned in the
group home and at age 92 knows she’s capable of driving although that privilege has
been denied her, the nurse needs to hear her out without prejudgment or a scripted
admonishment or solution. While he may not succeed in changing her feelings or
materially improving her quality of life (task), he can at least exhibit caring, empathic,
verbal and nonverbal communication, which assures her of a supportive relationship.
And because he is willing to take the time to hear her story, he might enable his patient
to be open to possibilities for improved quality of life that she has overlooked.
Family
A detailed discussion of this principle is found in Chapter 5. Family acknowledges that
both patient and family members form the unit of care in palliative care interactions.
The principle of family also means that nurses recognize the complexity of multiparty
communication in this context in that both the patient’s needs and family members’
needs must be considered. Further, family is seen as a conduit to the patient: it carries
primary responsibility for the implementation of patient care and as such is viewed as
a partner in the caretaking process. Honoring family members in this way also entails
encouraging their voices and their stories in family meetings that help to establish and
to clarify the patient’s goals of care.
Practice Example
The palliative care team meets with four family members of their comatose dying
grandmother, who does not have an advance directive. The goal of the meeting is to
try to determine what their grandmother’s wishes would be regarding aggressive treat-
ment at end of life, and DNR (do-not-resuscitate) orders.
Communication Behaviors
The communication task, in this case, is daunting: the palliative care nurse, along
with other team members, must help the family arrive at consensus about their
16 communication in palliative nursing
grandmother’s end-of-life care. In doing so, they must mindfully listen to each fam-
ily member’s perspective and story; they then need to facilitate problem solving and
conflict resolution if family members are divided about the course of care. Even if the
discussion gets heated, nurses must exhibit supportive, empathic, verbal and nonver-
bal communication in order to assure family members that their opinions are valued
and that they are considered a vital component of the unit of care (relationship).
Openings
A detailed discussion of this principle is found in Chapter 6. Openings are those critical
opportunities in patient care in which nurses’ skilled and strategic communication can
create the possibility for positive change. Such opportunities frequently occur around
painful transitions in patient care (e.g., initial diagnosis, decisions about treatment
options, disease recurrence). Through their roles as mediator, coach, and advocate
with patients and their families, nurses can help reframe these moments of tension so
that they become opportunities for resilience and coping.
Practice Example
Mr. Jones was a 68-year-old man with a 40-year history of chronic illnesses including
diabetes, obesity, hypertension, and COPD (chronic obstructive pulmonary disease).
Over the past year, he has also developed renal failure. Mr. Jones, his family, and his
primary care physician have discussed his declining health status, recent new diagnosis
of heart failure, and the resulting decline in his QOL and function. Over the weekend,
he informed his family that he is “done” and wants to discontinue his renal dialysis,
recognizing that this decision will lead to his death. His wife and daughter are appro-
priately sad but support and understand his decision. His brother, age 60 and also
diagnosed with renal disease and heart failure, has strongly opposed his decision and
insisted they all come in to the renal clinic today so that the staff can “straighten this
out.” He is very hostile toward Mrs. Jones and is emotionally distressed yet strongly
advocating for his brother’s care.
Communication Behaviors
This case example illustrates tremendous opportunity for nursing. The nurse in the
renal clinic can apply the principle of opening, using this change in the patient status
and goals of care to facilitate family communication. Careful assessment, listening to
each family member’s perspectives, and being present to the tension will be essential to
facilitating the next phase of care.
Relating
A detailed discussion of this principle is found in Chapter 7. Relating means that nurses
are willing to meet patients and their families where they are in their acceptance and
17 Defining and Understanding Communication
understanding of their disease and its course. This principle thus may entail a repeti-
tion of prognosis and treatment options to patients/families regardless of how many
times they have heard the bad medical news. As a patient’s/family’s awareness level
deepens, previous discussions will be repeated or revisited with the same or different
outcomes. The SPIKES model is limited in addressing only the initial encounter of a
physician’s confronting a patient with bad news. Yet a terminal diagnosis or equally
upsetting medical news cannot be processed instantaneously by the patient/family.
Patients and families need to digest the news incrementally and frequently in a non-
linear fashion—with subsequent questions about treatment options and prognosis,
which are often heard by nurses. This principle values family as a vehicle for reiterating
the bad news to the patient if she/he resists the diagnosis initially (Wittenberg-Lyles,
Goldsmith, Ragan, & Sanchez-Reilly, 2010). It champions adaptive communication
based on the patient’s/family’s acceptance of information concerning disease, progno-
sis, and plan of care, and it emphasizes team-based family communication over dyadic
communication between clinician and patient.
Relating involves prioritizing the relationship between the clinician and the patient/
family and attending to the goal of relationship in order to facilitate instrumental (task)
goals of nursing. Often this involves the ability of the nurse to be radically adaptive, that
is, to take into account the patient’s/family’s experiences rather than rely on her own
script for an encounter. Removing the clinician’s habituated response to an interaction
and adapting to the patient’s/family’s unique perspective means that the nurse values
that perspective over her own. This underscores a primary tenet of narrative nursing
and of the mutual influence model of communication discussed in this chapter: out-
comes of clinician–patient interactions—and patients’/families’ stories—are as depen-
dent on patients/families as they are on clinicians.
Practice Example
A palliative care nurse must face a family that remains convinced that the patient’s
end-stage esophageal cancer can be cured; rather than opting for hospice, as the phy-
sician has encouraged, they are demanding to enroll in a clinical trial for which the
patient is ineligible. In this instance, it will not be helpful for the nurse to simply repeat
the clinical trial requirements (habituated response). Rather, the nurse needs to be
radically adaptive, relating to the dynamics of the situation.
Communication Behaviors
The communication task is a challenging one, which involves careful repetition of the
prognosis and care options to both patient and family. The nurse needs to exercise
perceptive attentiveness, presence, and empathy (Pavlish & Ceronsky, 2009) at times
when it will be tempting to become impatient with a resistant family that not only
is in denial about impending death but, in refusing hospice, is denying the patient
the quality-of-life benefits of hospice. Relating to their conflicting goals, talking about
those goals, and working toward the goals are opportunities for nurses to be active in
18 communication in palliative nursing
their engagement of relating. Caring is obviously the relationship message that must be
communicated both verbally and nonverbally.
Team
A detailed discussion of this principle is found in Chapter 8. Team implies that a mul-
tidisciplinary group of individuals trained in various aspects of palliative care will
ensure the highest standard of care for end-of-life patients. This also means that team
members must communicate with each other about their patients in order to keep
abreast of a patient’s status, share information about her needs and concerns, and
skillfully coordinate her care; thus, team meetings are an essential component of this
principle. A team approach can also assure patients and family that they will not be
abandoned by medical caregivers, either during or after a patient’s illness and death.
The collaborative efforts of team members can aid each other in optimizing care for
both patient and family.
Practice Example
A palliative care nurse visits an elderly man dying of prostate cancer. While his pain
and other symptoms are being satisfactorily managed, he is quite anxious about what
will happen to his wife when he dies, as she suffers from severe diabetes and is unable
to care for herself. The nurse also learns that he is a deeply devout Roman Catholic.
Communication Behaviors
This nurse must consult with palliative care team members, primarily a social worker
and a chaplain but perhaps a psychologist as well, in order to address the patient’s
nonphysical suffering. The communication task is likely twofold: she must convince
the patient, if he is resistant, that self-disclosing his concerns to other professional
members of the team is potentially advantageous; likewise, she must influence her
team members to visit and assist this patient. In doing so, she takes an active role in
coordinating his care. Verbally and nonverbally, she must choose messages that mani-
fest caring, advocacy, and confidence (relationship).
According to Wittenberg-Lyles, Goldsmith, and Ragan (2010), the COMFORT con-
cept “is driven by narrative practice in nursing, the prioritization of family, early inter-
vention of palliative care, and radically adaptive communication between and among
patient/family/team members/clinicians” (p. 291). Its primary function is to assist
palliative care nurses in implementing the paramount goal of their patient-centered
care: preserving their patients’ quality of life. We believe that the COMFORT model
in its acknowledgment of the complex, multiparty, nonlinear, and repetitive nature of
communication in the palliative care context promises a more effective and humane
approach to patients and families than do traditional physician-derived commu-
nication protocols. We emphasize that the seven COMFORT principles be used
19 Defining and Understanding Communication
C—Communicate
O—Orientation and opportunity
M—Mindful presence
F—Family
O—Openings
R—Relating
T—Team
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21 Defining and Understanding Communication
DISCUSSION QUESTIONS
1. How is the COMFORT model different from other models with communication?
2. What is meant by the phrase “We cannot not communicate”?
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communicate
23
24 communication in palliative nursing
Ronald’s advice to seek to understand Mrs. William’s experience. She asks Mrs.
Williams to share what it felt like to hear that the treatment wasn’t working. Mrs.
Williams has spoken little about her family but she opens up to Eileen and with
great distress says that her greatest concern is “abandoning her mother-in-law.”
Eileen listens as Mrs. Williams shares that when her husband died from colon can-
cer 5 years ago she promised him that she would care for his elderly mother. Her
greatest concern is now feeling that she is abandoning her mother-in-law and the
promise to her beloved husband.
Eileen experiences the struggles that many nurses face when it comes to communica-
tion. She is left with the responsibility of compensating for a physician’s lack of com-
munication skills, alone with a patient who is emotionally distraught from hearing bad
news. Awkward communication situations like this come often in palliative care, and
few nurses receive adequate preparation for what to do or say. Eileen’s reaction to this
problem is very common—she seeks help from coworkers or team members. She feels
compelled to cheer her patient (and family, when applicable) through treatment, see-
ing this as a primary way of communicating patient support. But still, these attempts
have left her feeling as if she has failed. She still continues to share in the suffering of
patients and families, wanting to do more, say more.
Palliative care nurses do much more than simply provide presence when physicians
break bad news by giving patients and families a serious or life-threatening progno-
sis. Nurses are there before this happens, while it happens, and after it happens. The
ongoing presence of nurses affords an opportunity for both task-based and relational
communication. This chapter presents the basic communication characteristics of
these health care interactions. Communication is the cornerstone of palliative nursing.
Awareness of the unique role of nurses in patient/family encounters guides this discus-
sion so that we may illustrate specific ways to shape nurse communication practices.
This chapter will outline three foundational components for communication in
palliative nursing. The first section will detail narrative clinical practice and describe
how to approach patients/families so nurses have an understanding of the duality of
task and relational communication in their every interaction. The next section focuses
on verbal clarity and how to practice person-centered communication with patients,
family, and team members. Finally, the last section will feature nonverbal immediacy
and an awareness of the mistaken assumptions that can lead to miscommunication
and conflict. These three principles will serve as tools to initiate and respond to dif-
ficult communication encounters. Throughout this chapter and the next, we will dem-
onstrate how these principles overlap and offer specific strategies that can be used to
achieve both relational and task-oriented goals.
(Malloy, Paice, Virani, Ferrell, & Bednash, 2008). Although communication protocols
and guidelines exist, there is no one protocol that explicitly focuses on the unique
role of the nurse in this process (Price, McNeilly, & Surgenor, 2006). Instead, guide-
lines summarize four domains of action, beginning with preparation, message deliv-
ery, empathizing with emotional response, and summarizing the encounter; however,
nurses do so much more (Dahlin, 2010). For the nurse, supporting patients and fami-
lies receiving bad news is a process that happens before, during, and after the actual
delivery of bad news (Warnock, Tod, Foster, & Soreny, 2010). The intimacy of nursing
communication is the relationship a nurse shares with a family and patient during dis-
ease progression. The nurse is unable to control events surrounding bad news, as these
disclosures often occur in “uncontrolled” and unplanned moments with patients and
families (Warnock et al., 2010). The nurses’ role requires flexibility and attention to
the task and relational dimensions of communication during interactions that depart
from the familiar or known path.
Nurses can extend their physical care tasks to include the psychosocial aspects of illness
(Pavlish & Ceronsky, 2009). Relational communication is so much more than meeting
with the patient/family for comfort (Radziewicz & Baile, 2001). It includes facilitating
emotional reactions and providing opportunities to process the bad news (Warnock et
al., 2010). For Eileen, this meant engaging in active listening and trying to elicit patient
experiences. Teaching, caring, coordinating, and advocating are all enabled through a
communication behavior called narrative clinical practice.
reveal common forms of self-blame, including life decisions/actions that lead to illness,
feelings of guilt for poor decisions, and the desire to cure at all costs. As nurses witness
these stories, they address these feelings and work to help the patient rewrite the story to
include quality of life as central in all decision making.
Finally, nurses need to go beyond the medical facts associated with each patient
(Kendall, 2007). The nurse can work on reauthoring the story by seeing problems as
care goals rather than cure goals. Reauthoring alters the patient/family narrative in a
way that includes the total impact on the storyteller, and widens the lens beyond the
borders of the illness alone (Aloi, 2009). This involves refocusing the story in order to
redefine the person (i.e., patient/family). As the story unfolds, the nurse can gather
an understanding of prior biomedical interventions to grasp an understanding of the
present complaint. As the story emerges and the nurse begins to understand where the
patient and family are in terms of understanding and acceptability, verbal clarity will
help to communicate and process appropriate goals of care.
VERBAL CLARITY
While verbal clarity is an important feature of health literacy—to ensure that patients/
families receive information given to them by the nurse—it is important in hospice and
palliative care as a communicative feature that conveys emotional support. We assume
that there is a direct connection between communication behaviors and well-being,
and that some forms of supportive communication are more effective than others
(Burleson & MacGeorge, 2002). Supportive communication is in direct response to a
need—and the variation of these responses is how we characterize verbal clarity.
Person-centered messages are one way to convey supportive communication.
Person-centeredness is “the extent to which the perspectives and feelings of distressed
others are acknowledged, elaborated and granted legitimacy,” and has been empiri-
cally validated as a key dimension of emotion support skill (Burleson, 1994, p. 258).
Comforting behaviors expressed through supportive messages termed person-centered
messages (PCMs) have consistently been judged as more supportive and encourag-
ing for those having difficulty addressing their feelings (Jones, 2004). PCM can draw
out the thoughts and feelings of patient/families as they face a life-threatening illness,
making their challenges, symptoms, and fears known by their nurse.
PCMs range from low emotional support to high emotional support (MacGeorge,
Gillihan, Samter, & Clark, 2003). To achieve verbal clarity, the goal is to use PCMs
that are high in emotional support. Low–emotional support messages include
criticism, challenging legitimacy, and telling the patient/family how they feel. Low
PCMs deny the patient and family’s feelings. Middle-level emotional support mes-
sages explicitly recognize the patient/family’s feelings albeit through distraction,
offering sympathy, or explaining the situation. Highest forms of PCMs include
explicitly recognizing and legitimating the patient/family’s feelings by elaborating
and articulating feelings.
Communicating social support during care allows the nurse to accomplish task
goals and still be relational. Oncology nurses who provided chemotherapy to patients
28 communication in palliative nursing
reported that they worried that they provided too much irrelevant information, didn’t
really answer patient/family questions, assumed instructions were easy, and did not
provide enough opportunity for the patient/family to talk (O’Baugh, Wilkes, Sneesby,
& George, 2009). A PCM allows the nurse to present a realistic picture for the patient/
family, clarifying what the “silent” patient is experiencing and reminding families of all
that is being done to the “person in the bed” (Robichaux & Clark, 2006). PCMs lead
to: perceived communication competence of the nurse, improved coping skills for the
patient, increased liking of the nurse, and increased relational satisfaction between the
nurse and the patient (Jones & Guerrero, 2001). PCMs are used in conjunction with
nonverbal immediacy.
NONVERBAL IMMEDIACY
In short, nonverbal immediacy communicates liking (Burgoon, Birk, & Pfau, 1990).
Facial expressions, body movements, interactional distance, vocal tone—all of these
behaviors communicate dimensions of the interpersonal relationship between nurses
and patients and families (Haskard, Williams, DiMatteo, Heritage, & Rosenthal, 2008).
Appropriate nonverbal behaviors for nurses who share in the delivery of bad news
include maintaining eye contact with patients, leaning forward to show attentiveness,
self-awareness of the body to avoid fidgeting or other distracting movements, and
nodding to indicate agreement or understanding when the patient speaks. Nonverbal
immediacy can improve the cognitive learning of patients and increase the perceived
credibility of the nurse. Even though the verbal content of each bad news interaction
will change based on the patient, family, and team, the need to mirror and model
nonverbal immediacy proves to be the most beneficial for all parties in the interaction
(Ragan, Wittenberg-Lyles, Goldsmith, & Sanchez-Reilly, 2008).
Particularly in breaking bad news interactions, the patient fears the nurse’s message
and the nurse fears the patient’s response (McGuigan, 2009). While the patient fears
that bad news is coming and then more uncertainty following bad news, nurses fear
that their communication may evoke intense emotional reactions that they are unable
to handle (McGuigan, 2009). According to expectancy violations theory, we all have
expectations of how others will behave and react. We use these expectations to gauge
our idea of “appropriate” and “normal” nonverbal responses. General expectations
involve our expectations for behavior in certain environments. In hospice and pallia-
tive care, nurses expect patients and families to be respectful of their work by follow-
ing directions and collaborating with them to reach goals of care. When expectancies
are violated, individuals focus less on the conversation and more on the violation of
expectations. Our focus shifts to the communicator, our relationship with him or her,
and the context.
First, nurses reflect on communicator characteristics and consider the demo-
graphics of the patient/family member. Does the gender of the patient conjure
up specific patient expectations? Does the nurse have different expectations for
patients/family members with health care backgrounds (i.e., retired nurse, prac-
ticing physician)? Second, we reflect on our relationship to the patient/family
29 Communicate
member—do they have power over us? How long has the nurse known them? Is
this a patient the nurse has cared for many times over the last year? Or is this a new
patient? Power and intimacy compose relationship expectations. Finally, context
characteristics concern our reflections on specific interactions, such as breaking bad
news, and often involve third parties. It is in these instances that nurses are more apt
to have preinteraction expectations.
Take, for example, Donald, a hospice nurse who goes to see a patient in the pallia-
tive care unit of a large metropolitan hospital to talk to the family about hospice. Upon
entering the patient’s room, he is greeted by a woman relative sitting by the bedside:
“We’re going to go out of town today. We’ve said our good-byes. I’m at peace with all
of this. If he goes while I’m gone it will be okay. I just need to get the paperwork done
today before I leave.”
Immediately, this family member violates Donald’s general expectations. Donald
expects to be greeted by a family relative and allowed to provide his opening intro-
duction of hospice as well as assessment. Since he has no prior relationship with
this patient and knows nothing about the woman relative, he relies on his expecta-
tions for the interaction. He finds a seat directly across from her—instead of going
directly to paperwork (a communication task that she expects), he violates her
expectations by engaging in a conversation about the patient, saying in a quiet tone
with his paperwork lying on his lap: “Okay, well can you catch me up on what’s been
going on?” His nonverbal communication (sitting down, neglecting paperwork)
indicates to her that he is interested in what she has to say. The woman explains
that she has cared for her father for 3 years, they have shared open communication
about death and dying, that her father has a living will, and she is a medical assis-
tant in the hospital who is familiar with hospice and palliative care services. Further
into the conversation, Donald reveals his expectations for the interaction to her:
“Typically in hospice we have to convince people that hospice is appropriate.” She
replies, “I’m just sorry it’s taken this long. This was his fear—that this would hap-
pen and he would linger.” Donald then inquires, “Even though your father has been
ill a long time and you have prepared for his death, is this a difficult time for you?”
After further conversation, hospice paperwork was completed. Donald’s reaction to
expectancy violation could have very easily have been to go straight to paperwork,
speaking very little with this woman. Instead, he set his assumptions aside about
why she was okay to leave her dying father and prioritized relational communica-
tion alongside communication tasks.
Violations of expectations associated with breaking bad news come when nurses
judge whether or not emotional reactions are “normal” or “abnormal” (Radziewicz
& Baile, 2001). When expectations aren’t met, we socially evaluate the patient/family
member and adjust our communication accordingly. This evaluation is perceived as
either positive or negative, depending on many factors. Similarly, for patients, breaking
bad news interactions violates expectations as they are incongruent with expectations
for cure and thus increase uncertainty in communication (Afifi & Burgoon, 2000).
Expectancy violations can exist for both parties and highly impact clinical communi-
cation from that point forward.
30 communication in palliative nursing
Assessment
Earlier in the chapter, we described the process of witnessing as a way of listening
and capturing the patient/family’s story. In the case study that opened this chapter,
Eileen was advised by Ronald, a social worker, to be an attentive listener and to elicit
the patient’s experiences. To accomplish this, nurses can engage in witnessing by using
questions that capture meaningful aspects of the patient/family’s life (Aloi, 2009). The
following checklist (Table 2.1) can be used as a guide:
The nurse’s goal is to listen to the story, share it with others, and record it.
Witnessing is so much more than prompting patients/families to share, and listen-
ing (task communication) is about incorporating comfort communication into feed-
back and interpretation (relational communication). The following vignette serves to
illustrate the process of witnessing. A meeting with the adult son of a patient (S), the
31 Communicate
Recognize Identify “Tell me about times when you aren’t thinking about
individuality vulnerabilities, illness/your loved one’s disease.”
uniqueness “How would you describe this illness/the shared
experience of illness?”
“Is there anything else that could explain your/his/her
illness?”
“I’m wondering if there is more to this than meets the
eye.”
“Who else is involved in your/his/her illness?”
Understand life Encourage “How has your illness (or his/her illness) affected your
prior to illness sharing, life and your relationships?”
address “How do you think ignoring this will affect your life?”
feelings “How does your illness (or his/her illness) reflect on
you as a person?”
“How do you see the future?”
“How are you affected by others’ opinions?”
“What do you think influences this experience?”
Go beyond Consider “What people in your life are supporting you?”
medical the mental “What do you think needs to happen in order for you
information health of to be able to care for your loved one/yourself?”
patient/ “What needs to change?”
family “What does your success in solving problems related
caregiver to care say about your abilities?”
“How is this experience affecting your life?”
“What do you see in yourself now that you didn’t see
before?”
Adapted from: Aloi, J. A. (2009). The nurse and the use of narrative: An approach to caring. Journal
of Psychiatric and Mental Health Nursing, 16 (8), 711–715.
patient’s daughter-in-law (DIL), and a hospice nurse (RN) took place in a hospital
family room:
s: He’s got terminal cancer. We’ve talked before he came into the hospital. He
has a will. I’m just doing what he wants.
dil: He’s gone blind now.
s: It’s like I told my brother. If two could go out and one could stay, I would . . .
dil: It’s in his lungs, his liver, it’s ate [sic] up everywhere. He took chemo
3 weeks ago today, and he’s had two blood transfusions since then. I talked
32 communication in palliative nursing
to his cancer doctor, and now he’s had three strokes. So, now with the
strokes, it’s time for you. Dr. [X] told me yesterday that he’d be better off in
hospice, and with his will, he did not want to live like this.
rn: In hospice, we do what’s needed. We do what we need to do. With his can-
cer, he must be in pain.
s: Well, he has no spleen, no kidney—he lost those to cancer. He’s had heartat-
tacks, a heartattack a month ago. That’s how we found out he had cancer
again. [Son further explains that this is a second type of cancer]. So when
can we move him? How does this work? (Note: Son is urgent to move the
patient from hospital to hospice facility.)
rn: We are guests here [referring to hospice in the hospital], but we could do the
paperwork today and have him moved this afternoon to our inpatient facility.
s: I don’t want him moved today. I need to get used to this. (Note: Despite
urgency, son does not want patient moved today. The nurse recognizes this gap
inconsistency and addresses it through externalization.)
rn: After this long haul, as you are approaching the end, you are afraid of
what’s next . . .
dil: We don’t know want to do. My husband lost his job and has been taking
care of him. Then I lost my job, and we’ve just been taking care of dad.
s: My priority is my dad. They didn’t understand why I kept having to leave
work to take care of him, so they let me go.
dil: [begins to cry] This has been our life for 2 years.
rn: I hope you find peace knowing that you did do it. Not many people do it.
Do you feel like everything has been tried? (Note: Family reveals life prior to
hospice referral. Nurse responds by reauthoring, going beyond medical facts to
understand prior interventions)
dil: Yes, everything has been tried.
rn: Hospice does not start with consents. It starts with a hospice evaluation
[explains process]. As far as pain management, I would recommend a sub-
cutaneous infusion. I did it for my own grandmother. It provides the relief
needed for his extensive cancer pain [explains]. Once you stop artificial
hydration, we can expect 7–10 days. But once you factor in extensive can-
cer, as he has, strokes which keep a person from taking in fluid, it will be
shorter [explains]. And in hospice, we won’t judge you if you aren’t camp-
ing out and staying by his side. That’s okay. (Note: Nurse deconstructs any
preconceived ideas about hospice—recognizes family’s individuality.)
s: Yeah, I won’t be there. I don’t deal well with this. I need some time alone.
rn: (to DIL) Just the fact that he’s able to admit that to you, that’s healthy. Well,
we can move him tomorrow if that’s what you’d like. (Note: Nurse recog-
nizes his individuality, uses positive adjective to reauthor.)
Plan
As the nurse moves from listening and responding to patients/families through wit-
nessing, the next step is to determine what to do with the information. This was most
33 Communicate
problematic for Eileen—she knew to prompt Mrs. Williams to share her feelings but
did not know what to do when Mrs. Williams began sharing. For Eileen, the emo-
tional reaction shared by Mrs. Williams felt uncomfortable, yet understandable. The
intimacy of nursing creates opportunities where patients and nurses are vulnerable to
witnessing the reciprocal suffering of patients and families. Nurses can prepare them-
selves by learning to listen for key patient/family features as well as how to negotiate
problematic situations.
It is helpful to sort and organize the patient/family story according to the four qual-
ity-of-life dimensions (Table 2.2) that comprise palliative nursing. Use the checklists
provided in Table 2.2 for each of these dimensions.
Sorting the story’s content according to physical, social, spiritual, and/or psycho-
logical care will naturally help the nurse to identify specific assessments, resources,
and additional involvement from interdisciplinary team members (for more on this,
see Chapter 8). For example, Eileen’s patient, Mrs. Williams, reported that she worried
about “abandoning her mother-in-law.” Eileen learns that Mrs. Williams is a widow,
responsible for providing care for another family member. This is how Mrs. Williams
defines the priorities in her life and thus her quality of life—and the nurse’s job is to
develop a plan of care that recognizes this. The precedence for care planning should be
Used with permission from: Ferrell, B., & Grant, M. (2011). Quality of life: 1525 voices of cancer.
Oncology Nursing Forum, 23 (6), 907–916.
34 communication in palliative nursing
Table 2.3 Overview of Breaking Bad News Scenarios and Suggested Communication
Barriers to Breaking
Bad News How to Handle/What to Say
Lack of privacy x “I know this is not ideal, but let’s try to find as much privacy as
possible to talk. We will have more opportunity later for a quieter
space, but this is an important time to talk together.”
x “It would be good if you talked with each other [family] and decided
if all of you want to be included in decisions of care discussions. Can
we talk again this afternoon after you have had time to visit together?”
Over the phone x “I know this not ideal, but I can talk to you now over the phone
about your health and we can meet together tomorrow to talk more.”
x “Is it alright with you if I visit with you about your recent test?
I know that a phone call discussion is not my favorite, but this way
I can get you the information now and we can meet face to face
when it works with your schedule.”
Unable to contact x [by phone]: “I am so glad to reach you. I am Karen, a clinical nurse
family until after from Memorial Hospital. I have been with your Dad this afternoon
medical event and I need to talk to you about what we have been going through
here. Your father is very ill. Can I explain more details now about
your Dad?”
x [in person]: “I am so glad you are here. Can I talk to you about what
we have been facing with your Dad today?”
Lack of time to x “Let me apologize up front for being short on time in this moment,
explain but I do want to you give you a sense of what we know about your
blood levels. I promise to come back by this afternoon and talk more
with you about your questions and concerns.”
x “I have just a few minutes to update you on your blood work. I
know this is not enough time to process any questions or concerns
you might have, so I will be back by to talk more with you and your
family after lunch. Is that a good time for you?”
Cognitive x “Julie, I want to talk to you about how you are doing, and what
impairment the tests we have been running are telling us. In case you need help
understanding what we know, I think it would be helpful to share
this information with your family, too.”
x “Because Julie’s having a hard time understanding what we are
learning about her kidney function, I am glad I can share the
information with you [family]. Can you talk with me about Julie?”
Interpreter x Explain to patient/family that you are using the help of an interpreter
required to take the best care of the patient/make the best decisions.
x When the interpreter translates, look at the patient/family.
x Confirm that the patient/family have asked the questions that they
have.
(continued)
35 Communicate
(continued)
36 communication in palliative nursing
(continued)
37 Communicate
(continued)
38 communication in palliative nursing
Adapted from Warnock, C., Tod, A., Foster, J., & Soreny, C. (2010). Breaking bad news in inpatient
clinical settings: Role of the nurse. Journal of Advanced Nursing, 66 (7), 1548–1549.
INTERVENE
By recognizing the defining features of the patient/family’s story and identifying their
own definition of quality of life, nurses can tailor their own supportive communica-
tion while providing primary care. In our opening case study, Eileen learns that the
most devastating aspect of bad news for Mrs. Williams is the psychological burden
associated with her obligation to oversee care for her mother-in-law. As Eileen nego-
tiates care-planning needs in terms of coordination of care and possibly referral to
hospice care for Mrs. Williams, she must acknowledge this burden (relational commu-
nication) while at the same time work to ensure that Mrs. Williams understands her
prognosis and transition to palliative/hospice care (task). To accomplish comfort care
and communication, nurses must recognize their own assumptions and emotional
involvement as well as practice person-centered messages.
How we feel about others impacts how we communicate—how much attention we
give to patients/family members varies based on how we feel about them. Some get
more attention, and others get limited time and effort. It is important to recognize our
39 Communicate
Adapted from Radziewicz, R., & Baile, W. F. (2001). Communication skills: Breaking bad news in
the clinical setting. Oncology Nursing Forum, 28 (6), 951–953.
Nurse condemns patient’s feelings. “You knew this was coming. I don’t know
why you are so shocked.”
Nurse challenges the legitimacy of the “You should not feel bad because this is
patient’s feelings or actions following not your fault.”
from those feelings.
Nurse ignores the patient’s feelings. “Let’s talk about your treatment from this
point forward.”
Nurse attempts to reframe the situation “You should at least be happy that you
in a positive way by diverting the patient’s know for sure now and can deal with the
attention away from the event, smoothing situation.”
over the negative feelings, or offering some
sort of consolation, or suggested method to
deal with the bad news.
Nurse acknowledges the patients’ feelings “I can see why you are upset.”
but does not attempt to help the patient
understand how to cope with them.
Nurse provides a non-feeling-centered “It is very normal to be upset. I see
explanation of the situation intended to people get upset like this all the time
reduce the patient’s distressed emotional when they have to deal with a diagnosis
state. This explanation offers some principle like this.”
for interpreting the situation.
High–Emotional Support Messages
Messages that recognize and legitimize the patient/family’s feelings
Nurse explicitly recognizes and “I’m so sorry this has happened. Did
acknowledges the patients feelings you think this was coming? I realize it’s
but does not elaborate on those frustrating, especially since you’ve been
feelings. sick for so long. Please talk to me about
how you feel.”
Nurse provides an elaborated “You may not be ready to talk about this
acknowledgment and explanation now, but I want you to know that I am
of the patient’s feelings here for you. I will continue to be your
nurse. I am going to do my best to make
(continued)
41 Communicate
Nurse helps the patient to gain a perspective on “I’m so sorry. I know how much you
his or her feelings. Feelings about the bad news wanted to beat this disease and how
are explicitly elaborated and legitimized. Nurse hard you have fought. And I know that
attempts to help the patient see how his or her you would do anything you could to feel
feelings fit into a broader context. better. You must be thinking so many
things right now. You must feel hurt and
anger and question why this is happening
to you. I know that you have seen many
specialists and that there have been many
mixed messages—which makes this hard
to believe. I’m going to make sure that
you are comfortable. We have a team
here to help you with anything that you
need. It is important to take advantage of
this time that you have to talk with your
family, friends, and those that you love.”
Adapted from: MacGeorge, E. L., Gillihan, S. J., Samter, W., & Clark, R. A. (2003). Skill deficit or
differential motivation: Testing alternative explanations of gender differences in the provision of
emotional support. Communication Research, 30 (3), 272–303.
philosophy and the dying process. Remember, many of these patients and families have
only thought about cure until the nurse, the physician, or a member of the health care
team begins to talk about palliative care.
The following example illustrates how a nurse can be both verbally clear, yet elo-
quent in these discussions:
An initial hospice visit to the emergency room of the local hospital reveals that the
patient is an elderly woman recently placed on a bi-pap machine. Two sons and one
daughter (D) are present, and another daughter who serves as the primary caregiver is
absent. The hospice nurse (RN) enters the patient’s room and sees that the patient is
sitting up in bed and is communicating—however, the family quickly escorts him out
of the room into a private family meeting room:
d: They called us yesterday and said she probably wouldn’t make it through the
day. We did comfort only. Today we are just waiting.
42 communication in palliative nursing
rn: So today she has a little rally, a little more “umph.” So today you are won-
dering: am I doing the right thing by talking to hospice? (Note: Although
family has been told that patient is dying, they are reluctant to elect for hos-
pice care. The nurse summarizes this experience.)
d: Yes, we are confused.
rn: When you have a person who is elderly and you have the day-to-day care
and events, it changes. Today is an “up” day and a good day. But, could
tomorrow be a down day? So you need to step back and look at things
globally. What can we fix? What is her quality of life? What are the things
in life she’s been losing that we can get back? [pause] Is there no fixing?
Then it’s time for hospice. (Note: The nurse begins to educate about hospice
philosophy by focusing attention on quality of life and helps the family recog-
nize how quality of life is compromised.)
Yesterday was a bad day. Today is a good day. I saw that she is on a bi-pap
machine. Can she be without the bi-pap?
son-1: Only for about an hour.
d: And she told me she doesn’t want that machine but that she doesn’t want
to die. (Note: The family is first to bring up death and dying. The nurse
acknowledges and educates.)
rn: Yes, well no one really wants to die. [lowered voice] Even a terminal person
doesn’t want to die.
son-2: She hasn’t slept in 3 days.
rn: That could be part of the medications.
son-2: I don’t think so. She told me that she won’t go to sleep because she’s
afraid she won’t wake up.
rn: That tells me that she’s pretty aware of what’s in front of her. That she
knows she’s dying. (Note: The nurse vocalizes a conclusion for this family.)
EVALUATE
Encouraging patients and families in sharing their stories, listening and sorting perti-
nent information relative to the quality-of-life domains, and practicing self-awareness
and person-centered messages will collectively produce quality palliative commu-
nication. Still, the nurse’s ability to reflect on his/her own communication choices
and its impact on delivery of care will reveal strengths and highlight areas in need
of improvement. Essentially, best practices for communication are ones we learn in
hindsight!
Evaluation is particularly important following emotionally charged interactions
and upon a patient’s death or discharge. Taking the time to understand our reactions
and assess how well the situation met task and relational goals is important. Try using
the following questions (Figure 2.1) to guide the reflective process:
Stage 1
Description
What happened?
Stage 6 Stage 2
Action plan Feelings
If it arose again, What were you
what would you thinking and
do? feeling?
Stage 5 Stage 3
Conclusion Evaluation
What else could What was good
have been done? and bad about
the experience?
Stage 4
Analysis
What sense
can you make
of the situation?
Family and patient feedback is also important, as their thoughts and feelings may be
different from those of the nurse. Patient and family feedback should be encouraged to
determine if a communication goal was accomplished and whether or not verbal and
nonverbal communication conveyed support. Use the following checklist (Table 2.6)
to generate talking points with patients and families:
44 communication in palliative nursing
CHAPTER SUMMARY
Patients and families facing serious, chronic, or terminal illness have a story to tell.
Most of them want to share their journey and talk about the trials and tribulations of
illness. Most of them want to share it with their nurse. Learning to listen to these sto-
ries and capturing important information about what they value, what’s important to
them, and what is meaningful about their life can lead to comforting communication.
Encouraging storytelling, listening to quality-of-life issues, and practicing person-
centered communication are cornerstones of communication in palliative nursing.
These principles work together to accomplish task and relational communication at the
same time. Chapter 3 will illustrate how the nurse can tailor communication messages
to meet the health literacy needs and cultural sensitivity of patients and families.
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helping situations. Communication Research, 31(3), 338–360.
Jones, S. M., & Guerrero, L. K. (2001). The effects of nonverbal immediacy and verbal per-
son centeredness in the emotional support process. Human Communication Research, 27,
567–596.
Jones, S. M., & Wirtz, J. G. (2006). How does the comforting process work? An empirical
test of an appraisal-based model of comforting. Human Communication Research, 32,
217–243.
MacGeorge, E. L., Gillihan, S. J., Samter, W., & Clark, R. A. (2003). Skill deficit or differential
motivation: Testing alternative explanations of gender differences in the provision of emo-
tional support. Communication Research, 30(3), 272–303.
48 communication in palliative nursing
DISCUSSION QUESTIONS
EXERCISE #1
Adult Family Member, sitting at bedside:
My father has been living with us for about 3 years. A week ago he fell and broke
his hip. They found bleeding in his stomach; he’s had a hernia for over 40 years.
They went in and put the g-tube in, pulled his stomach down, and anchored it
(g-tube) to the stomach. During this time he crashed and was intubated. He came
out and for 5 days he sat here; his hip was still not fixed and he was in so much
pain. After they did hip surgery, they were never able to extubate. We removed the
tube because we knew that’s what he wanted. Everything is now failing—and I said
“stop”—his arms are so swollen from blood clots and they wanted to do tests. I said
“no”—he didn’t want that.
Discussion Questions
1. What was the turning point that shifted this patient’s general story to a palliative
story?
2. Identify the gap in this story as identified by this family member. What does this
tell you about her acceptance of the situation?
3. Practice externalization and provide an example of how you would respond to this
family member.
EXERCISE #2
Kath’s narrative—Adult daughter, primary family caregiver:
49
50 communication in palliative nursing
they said that Mom had Alzheimer’s disease, Vascular dementia and Lewy Body
dementia. Each of us, my mother, father, brother and me, absorbed the multiple
diagnoses the best we could and vowed to carry on, although it was my father who
shouldered most of the responsibility for my Mom’s daily support. Dad would tell
us: “you’ve got your own lives to lead” and would only accept help, reluctantly,
when things became too difficult for him to manage. He had such strength of char-
acter and he was my anchor. We all respected his pride and independence.
On a cold, crisp December’s day, Dad was on his way to collect Mom from the
local Day Center when he had a car accident. At first all seemed ok, but he was
admitted as a precautionary measure to the hospital where he was found to have
a severe chest infection. Initially, Dad responded well to treatment, but then he
lost his sight. Funnily enough, he did not make a fuss about that, it was only when
he kept looking at a non-existent wristwatch that I became suspicious and chal-
lenged him; it was then that he admitted he could no longer see. I visited Dad each
day before breakfast so I could feed him and only left after supper time, but after
a short period of time his kidneys started to fail. Dad needed an operation to survive
but, as we were told, would not survive the operation. The most cruel paradox, with
the only tangible outcome being one we did not want to face. But we had to confront
it and honor Dad’s dignity and quality of life. Eventually, the monitors giving him life
support were unplugged and the morphine increased and I watched until Dad closed
his eyes and died. I had to let him go, the father who had given me so much uncondi-
tional love during his lifetime. It was then that Susan (nurse) entered my world.
With help I tried looking after Mom, staying with her in her home, but it was
too difficult and confusing for her. So, after a lot of thought, discussion and soul
searching, Mom agreed to go into residential care. Although I knew, on balance, it
was the right thing to happen, when the day came for her to “go there” I was heart-
broken, a feeling of loss as great as when my Dad died. Well-meaning friends say
how relieved I must feel now that Mom was in residential care: how wrong they
were! Such feelings of guilt, in letting Dad down, and of sadness, in seeing someone
you love struggle to make sense of their life and new surroundings.
Mom has insight for short periods—windows on the world as I call it—and
at these times she has such clarity. During one of her “windows” Mom may ask
me a number of questions, such as: “Has my mental state got worse?” and: “Will
I get better?” You learn to think on your feet, asking her for her telephone number,
knowing that she will remember it, and then you can say: “Can’t be so bad can it
Mom? . . . of course you will get better”—all the time knowing that is not going to
happen, but at least it gives her hope. Mom also asks about Dad. Invariably, when
I go and see her, Mom will jump up, glad to see me, take my hand, and ask: “Where’s
Dad?” I try and fight back the tears explaining that Dad, her husband, has died.
Mom has no recollection of the day of his funeral when she said she felt like crying,
but couldn’t. I smile, glad that my mother does not feel the pain as I do.
Each visit to the residential home is challenging, as you do not know what you will
find or what questions you will be asked. Sometimes friends and colleagues at work
ask me how I am doing: “Fine” I will reply, but I am not fine, feeling that every waking
moment is consumed by the sheer effort of coping and locking my emotions away.
51 Communicate
Exercise Discussion
1. Recognize individuality—What unique vulnerabilities exist for this family member?
2. Understand life prior to illness—What was Kath’s like life prior to her mother’s
illness and father’s death? What is it like now?
3. How would you describe/educate Kath about her mother’s condition (mental
health)?
4. How does Kath define quality of life? Which domain is important when providing
a plan of care for her mother?
Used with permission from: Keady, J., Ashcroft-Simpson, S., Halligan, K., & Williams,
S. (2007). Admiral nursing and the family care of a parent with dementia: Using auto-
biographical narrative as grounding for negotiated clinical practice and decision-
making. Scandinavian Journal of Caring Sciences, 21, 345–353.
EXERCISE #1
Review the opening case study scenario for this chapter.
EXERCISE #2
Divide students into four groups. Assign each group one of the four domains of qual-
ity of life (physical, psychological, social, and spiritual). Working in groups, have stu-
dents write an example statement for each aspect listed in their assigned domain (e.g.,
for physical well-being, students would write example statements for fatigue, sleep
disruption, etc.). Statements can be made up or can be examples that they have heard
from their practice. Once statements have been written, have groups identify specific
resources available or care plan actions that would be supportive for the patient/fam-
ily member.
EXERCISE #3
Have students write a verbal analogy and detail verbal directness statements to describe
a disease or illness (e.g., cancer, dementia, COPD). Below is an example:
52 communication in palliative nursing
Once students have drafted an analogy and verbal directness statement, pair them
up with a classmate and have students share their work, choose and refine the best one
for each, and then have pairs share with the larger group as a whole. Instructors may
want to assign specific diseases to certain parts of the classroom or as appropriate given
coursework curriculum.
EXERCISE #1
Patient: Let me take you back to the start. I was completely well. I was toodling along
with two little kids and a husband. He is a physician. I was teaching school, and one
day I found a football-sized mass in my abdomen. It frightened me, but because it
was so huge, I felt it had to be benign. After all, something that big could not possibly
be a cancer, and the word cancer just never even entered my mind. I was too young,
I thought. Anyway, I went into surgery not having a clue. The doctors really did not
prepare me for it except to say I had a mass. I remember exactly what he said. I woke
up from surgery to hear my surgeon say, “I have good news and bad news. I didn’t
have to remove any of your organs, but (pause) you do have cancer.” It just blew me
away . . .
Used with permission from: Dias, L., Chabner, B. A., Lynch, T. J., Jr., & Penson, R. T.
(2003). Breaking bad news: A patient’s perspective. Oncologist, 8, 587–596.
EXERCISE #2
Put students in pairs. Have them each share a funny story or their most embarrass-
ing moment. During the story, students who are listening should provide no feedback
(e.g., they should not laugh or smile, which is a violation of expectations). Then ask
students:
RESPONDING TO DENIAL
Show students a clip from a film (see the table below) and ask them to write how they
would respond to the patient (verbally and nonverbally).
Optional: Scene/dialogue can be role-played between two students.
“The response to the drugs we tried isn’t what we hoped. But there are investiga-
tory drugs which we are willing to utilize. However if you become incapacitated
54 communication in palliative nursing
Movie Scene/Dialogue
Stepmom (1998) Susan Sarandon’s character reacts to the news of more cancer:
“But you said the last time that you got it all. So if you were wrong
the last time then there’s a good chance you’re wrong this time
because the last time you . . . but people . . . you . . . we . . . we can
beat it. I mean people beat it all the time right?”
My Life (1993) Michael Keaton’s character reacts to news that he has 3–4 months
to live: “Come on. I’m still in the game here man. There are a lot
of other therapies . . . treatments.” The next scene shows him and
his wife walking to their car when suddenly he stops and runs
back to confront the doctor: “Who the hell do you think you are?
To take away my hope like that. That’s all I have.”
Brian’s Song (1971, After more surgery Brian awaits news from the doctor.
2001) Agitated, he turns to his friend: “I want them to check me
out and get me out. There’s too many sick people around
here. . . . Everyone’s talking to me like I’m a child.” When the
doctor comes in and tells him that the cancer has spread to his
lungs, Brian responds by yelling and throwing things across
his hospital room.
Beaches (1988) Toward the end of the film, Barbara Hershey’s character stops
taking phone calls. When confronted with this, she responds: “I
don’t care what they (her friends) think.” An argument ensues,
and Bette Midler’s character comments that she hasn’t changed
clothes in a week.
Hillary: “Just leave me alone. Okay. That’s all I want is to be left
fucking alone . . . You don’t know what this feels like at all. I’m
the one who won’t live to see my daughter grow into a woman.
I hate it. I don’t want it to be over with yet. . . . So you don’t
understand what this feels like. Alright. You’re still in the land of
the living.”
or it becomes unreasonable for you to handle your affairs for a block of time, it
might be wise to make some decisions now. Any questions?” Emma responds: “No.
I know what you are saying. I have to figure out what to do with my kids.”
You are a healthcare provider who works with patients at a local hospital. Over
time, you and your colleagues notice your patients, while successful at their exer-
cises, are suffering from low morale. After conversing with each other, you and
your fellow healthcare providers decide to take a more active role in communicat-
ing feelings of liking and fondness to your patients. Collectively, you decide that
by sharing your liking and fondness, your patients will experience an increase in
morale and feel more positive. A meeting is arranged for all the healthcare provid-
ers at the local hospital. At the meeting you and your colleagues brainstorm a list
of behaviors that should be used with your patients.
Those working in the healthcare provider condition should then generate as many
examples as possible of nonverbal, verbal, and supportive affectionate communication
behaviors to use with their patients. The other students, working as family members,
should receive the following prompt.
Family Member Script Sample:
A member of your family is staying in a local hospital for cancer care. Over time,
you and the other members of your family notice that your loved one is suffering
56 communication in palliative nursing
from low morale. After conversing with each other, you and your family decide to
take a more active role in communicating feelings of liking and fondness to your
loved one. Collectively, you decide that by sharing your liking and fondness, your
loved one will experience an increase in morale and feel more positive. The entire
family decides to meet and discuss what types of behaviors they could use with
their loved one to express liking and fondness.
Those acting as family members should create examples of verbal, nonverbal, and
supportive affectionate expressions. All students should receive 15 minutes to identify
as many behaviors as possible. Instructors might consider providing groups with a
definition of verbal, nonverbal, and supportive affectionate expressions. Floyd (2006b)
identifies verbal affectionate communication as phrases such as “I like you,” nonver-
bal affectionate communication includes behaviors such as hugging, kissing, or hold-
ing hands, and supportive affectionate communication includes actions of social and
instrumental support such as helping with a favor or loaning materials. Once the 15
minutes has expired, the groups should share their lists orally.
Used with permission from: Byrnes, K., & Myers, S. A. (2010). Using group work
to introduce students to affectionate communication. Communication Teacher, 24(3),
142–145.
DEBRIEFING
The debriefing consists of two steps. The first step is to address the groups’ examples.
The following questions can be used to facilitate the discussion:
1. What examples did your group create for expressions of verbal, nonverbal, and
supportive affectionate communication?
2. As a health care provider, what type of affectionate expression was the easiest to
create examples of?
3. As a family member, what type of affectionate expression was the easiest to create
examples of?
4. What are the similarities/differences between the health care provider examples
and the family examples?
5. How would you expect the relationship between the patient and the health care
provider to change if patients received more affectionate communication?
6. How would you expect the relationship between the patient and family member to
change if patients received more affectionate communication?
57 Communicate
7. What benefits could the patient experience from receiving more affectionate
communication?
8. What benefits would the health care providers or family members receive from
giving affectionate communication?
Once this in-class debriefing is completed, students should be given the opportu-
nity to raise any additional issues or questions. After all issues and questions have been
addressed, the instructor should conclude class by reminding the students the purpose
of the activity, which was to identify and create examples of affectionate communi-
cation, and examine the effect affectionate communication can have on individual’s
well-being.
George is now left to wonder about Lanz and his family as they endured high levels of
invasive intervention too near the end of life—potentially because of low health liter-
acy and little communication about care options and disease trajectory. As a nurse pre-
sent for so many dialysis treatments with Lanz, George had seen his dwindling health
59
60 communication in palliative nursing
and increasing tiredness. Many nurses have observed and been distressed over similar
ethical dilemmas of patient treatment and its futility. George shared a connection with
Lanz and is haunted by the care decisions that were never intentionally planned for this
patient. George feared what was ahead for Lanz but was unsure about how to engage
him in challenging subjects about withdrawing dialysis, advance directives, his family
concerns. These issues followed George in his care for Lanz and turned into anxieties
and regrets in light of the intensive period of resuscitations that punctuated the final
days of Lanz’s life.
Palliative care is a philosophy of care that penetrates every area and specialty of
nursing. Palliative care is a fundamental element of nursing that transcends practice
areas and roles (Dahlin, 2010). For advanced-practice nurses specializing in palliative
care, coordinating communication with the patient and family about the illness and
treatment options is central to care. However, the communication traps and frustra-
tions in providing this care are many. Identifying influencing factors such as low health
literacy and cultural differences will facilitate the work of educating the patient and
family about the illness and their options for care.
The “O” in COMFORT, the matter of interest for this chapter, deals with orientation
and opportunity for a patient and family facing serious, chronic, or terminal illness. An
overarching concept in this chapter is that of accommodation, and ideas from commu-
nication accommodation theory will help explain accommodation in clinical practice.
The first idea introduced in this chapter is health literacy and how this determines the
kind of care, cost of care, experience of care, quality of care, choice of care, and the
nurse’s experience of providing that care. Second, the chapter presents cultural theory
and how this colludes intractably with health literacy—for any patient and family.
The ideas of communication accommodation, health literacy, and culture come
together to help identify nursing skills to better understand patients and families and
facilitate shared understanding with them about care choices and treatment in light of
their values.
communicate in similar and dissimilar ways and that the way in which we understand
the speech and behavior of another will determine what we think of the interaction.
Using this communication idea (Figure 3.1), we can see that nurses communicating
with patients and families will practice convergence (i.e., adapting and aligning with
their communication), divergence (i.e., increasing the differences between them), or
overaccomodation (i.e., overdoing efforts to regulate, modify, or respond to others)
(Giles, 2008).
As we address the concept of low health literacy and cultural difference throughout
this chapter, we will offer practice suggestions that will help palliative care nurses con-
verge with their patients and families rather than diverge or overaccommodate.
Nursing is not a stranger to the realization of the profound cultural impact in prac-
tice. Cultural competencies and transcultural nursing are not only concepts that have
been valued in the nursing profession, but they also have been increasingly empha-
sized in nursing education given the growing diversity of our population. Using the
framework of convergence in the communication accommodation theory, the already
existing cultural competency discussion is extended here to include health literacy
improvement. Attention to these concepts is essential to improving patient and family
understanding of disease and treatment choices.
Below basic - Can identify health care activity to perform a simple set of
instructions
- Can read text with simple words
- Graphics are useful
Basic - Can read text using simple words and declarative statements
- Can extract major points
- Middle school reading level
- Graphics are useful.
Intermediate - Can accurately read prescription label and follow directions
- Can apply information on a scale to locate answers
- Can interpret information presented in narrative or graphics
Proficient - Can compare and contrast from different sources
- Can understand difficult abstract concepts pertaining to medical
information
- Able to figure costs pertaining to health insurance plan
Kutner et al. (2007). Literacy in Everyday Life: From the 2003 National Assessment of Adult Literacy
(NCES 2007–480). Washington, DC: US Department of Education, National Center for Education
Statistics.
64 communication in palliative nursing
adults with Below Basic health literacy skills would have difficulty reading a chart or
simple instructions. These same adults are more likely to report their health as poor
(42%) and are more likely to lack health insurance (28%) than adults with Proficient
health literacy” (U.S. Department of Health and Human Services, 2010, p. 9). These
numbers are at once troubling, but not a complete shock. The majority of the litera-
ture intended to guide nurses through the low–health literacy maze focuses heavily on
written materials and how to determine if a patient/family can really understand those
materials. But as we have already noted, health literacy is not entirely straightforward
in terms of reading and comprehension. Health literacy includes more than word reor-
ganization, reading comprehension, and numeracy skills. Understanding health liter-
acy in its fullness includes language, context, culture, communication skills levels, and
technology (Mancuso, 2009). Only by understanding these additional elements can we
help people acquire and apply information in the best way.
The general assumption in the literature is that patients and families with language
barriers and social determinants are likely candidates for low health literacy. What is
unique to palliative care is the reality that all patients and families experience compro-
mise in health literacy. Impeded communication, emotional stability, thought processing,
listening, and information processing all serve to lower health literacy. Though we recog-
nize studied and proven populations operating in below-basic and basic health literacy
levels, we also propose that any patient and family receiving palliative care—despite their
ethnicity, background, and appearance—be cared for as though they are operating with
lower levels of health literacy until the contrary is demonstrated.
Imagine a physician who herself was suffering from stage IV non–small cell lung
cancer. She is emotionally compromised. Her family is emotionally compromised.
Their health literacy is then compromised and lowered. So we suggest that the nurse
clinician move beyond essentialized ideas about those with low health literacy and
always work to gain an understanding of how a patient/family is processing health
information and the ways they are using information to make decisions.
Cultural Humility
Concerns about cultural insensitivity and inadequate training for patient/family com-
munication with people of diverse backgrounds draw attention to inconsistencies
between the idea of cultural competency and the reality of the practice of intercul-
tural nursing in palliative care (Gunaratnam, 2007). Gunaratnam notes that cultural
awareness in the palliative care setting is unique in that it depends on the “non-rational
and visceral components” of care (Gunaratnam, 2007, p. 470). Because cultural com-
petency exists as a movement, it has been reflected in palliative care education and
training. For palliative care, this often takes the form of lists that identify different cul-
tural and religious groups, death-related beliefs, practices, and rituals (Jones, Cason, &
Bond, 2004). Palliative care recognizes that death and dying can intensify the profun-
dity of culture and ritual. Rethinking the suggested characteristics of cultural compe-
tency, nurses could instead question the basic assumption that cultural knowledge is
something that can be “mastered.”
65 Orientation and Opportunity
Cultural knowledge can be presented in a way that brings nurses and patients/fami-
lies together, rather than something that separates and differentiates. As with many
protocols and required skill sets for nurses, the “retreat behind a technique” can protect
the nursing clinician from demonstrating humility in the face of difference (Saunders
& Bains, 1983).
From a communication standpoint, which is what we offer in this volume, the basic
goal of communicating with patients and families—as well as a team and staff—is to
create shared understanding. We advocate that this is best accomplished by privileging
the narrative and the relationship with the patient/family first. In other words, valu-
ing the patient and family experience with time and communication in the clinical set-
ting heralds their journey as important and credible and necessary to moving forward
in achieving good care.
In nursing literature, cultural awareness addresses the clinician’s consciousness
about a nurse’s own reactions to individuals who are different from the clinician.
Cultural attitude is based on a clinician’s own thinking about cultural differences.
And cultural skills include the practice of culturally competent communication
(Nyatanga, 2008). Communication skills and an open dialogue are developed and
supported by a willingness to attain cultural knowledge and sensitivity (Flaskerud,
2007). Joining these cultural competency categories with patient/family interaction,
nurse communication might fall into the successful category, in which the message
intentionally sent was interpreted accurately. Then again, the message might not be
interpreted with accuracy. A message might result in miscommunication—in which a
message was intentionally sent but was not interpreted accurately (i.e., a patient/family
member does not understand dosage of pain medication due to their low health lit-
eracy surrounding numeracy). Accidental communication is sent without intent but
interpreted accurately (i.e., a nurse checking her phone, her watch, and the clock on
the wall during a short bedside encounter is presumed by the visiting family member
to be prioritizing time and task over relationship with patient). Attempted communi-
cation includes messages that were sent but not received (For example, a notation to
provide a social work consult is added to a chart and inadvertently deleted. The fam-
ily, expecting the consult to occur the following day is distressed and confused when
this visit does not materialize.). Accidental and miscommunicated messages can be
the most destructive to clinician/patient/family relationships. In this fifth category of
communication, a message is sent unintentionally and interpreted inaccurately (for
example, a NP frowns and grimaces as she enters a room with a patient/family; this is
interpreted as her dislike toward the patient/family, when in fact she is frustrated by
a previous staff interaction about a different matter altogether) (Guerrero & Floyd,
2006). This simple framework is helpful in considering the complex impact of culture
on intended and unintended messages while a nurse is attempting to make patients
and families aware of their health situation and possible care options.
The idea of potential low health literacy for every patient and family is in con-
cert with a need to practice cultural humility with all patients and families. Consider
first the culture of health care, nursing, and medicine. Those working/training/oper-
ating in this culture have been medically socialized to this culture (DuPre, 2010). This
66 communication in palliative nursing
socialization has taken thousands of hours, exposures, and personal sacrifices. Those
outside of the health care culture simply do not share in this socialization experience.
A base assumption, with the exception of patients who also live in the health care cul-
ture, can be that a cultural divide exists between nurses and all of their care receivers.
Cultural competency requirements can systematically support a static and “brass
tacks” conception of culture. As various programs in cultural competency have
matured, voices in health care have issued warnings about a too essentialized concep-
tion of culture. Scholars and health care professionals note that “culture” is always
moving and morphing as people make use of their cultural resources in creative ways,
and increase the possible blend of cultural factors as populations grow and cross paths
(Santiago-Irizarry, 1996). If we accept the definition of culture to essentially get at the
idea of competing discourses within situations characterized by an unequal distribu-
tion of power, then we must also accept health care as its own cultural context.
We are in agreement with other writers who propose that the term cultural humil-
ity can supersede the idea of cultural competence (Tervalon & Murray-Garcia, 1998).
Traditional family configurations are blurred, multiple generations of intercultural
marriages have created too many cross-fertilized cultural patterns to contain, and so
the dominant pattern in nursing to adopt standardized cultural competencies may now
be much less beneficial to the patient. Cultural humility asks nurses to adopt a “clean
slate and assess the patient regardless of their cultural orientation” (Nyatanga, 2008, p.
315). This approach to cultural sensitivity and communication asks the nurse to mind-
fully respect each patient/family member, their dignity, and their need—regardless of
an ethnic origin, religious belief, or personal attribute that might label them. Consider
this example of cultural humility. A 75-year-old woman from a large Korean family was
admitted with end-stage heart disease to the cardiology unit. The woman had a large fam-
ily including her spouse, five children, many grandchildren, siblings, and a 95-year-old
mother. The family and patient were highly anxious, speaking only in Korean to each other.
The patient’s elderly mother created an altar in the room, bringing daily offerings of fruit
and incense. A major conflict ensued when a nurse informed the patient’s mother that
incense could not be lit due to fire codes. The patient unfortunately declined and her heart
failure worsened. The family became very agitated, and the hospital patient advocate rep-
resentative was called in as the family became very distraught and dissatisfied. One of the
specific complaints was that while their mother had been hospitalized for 2 weeks and was
now dying, they had never seen a chaplain. When the patient advocate met with the nurses,
they admitted that they assumed the patient and family were Buddhist and would not
want a chaplain. The family explained that they were a family very strong in their Korean
heritage and Buddhism as a life philosophy; they also were “born-again” Christians and
were offended by the lack of spiritual care, especially since they had seen chaplains visiting
other patients, and thus they felt excluded.
The current curriculum in cultural competency does not and cannot accurately
and completely reflect the cultural world in which nurses practice. True cultural com-
petence is not a discrete end point, but rather an ongoing and active engagement in a
lifelong process. This process requires humility as nurses will continually reflect and
consider their practice, and their interaction with patients/families/staff, and ultimately
67 Orientation and Opportunity
this reflection will result in better ways to communicate (Tervalon & Murray-Garcia,
1998). Cultural humility does not suggest disposing of valuable knowledge about the
health care practices of particular communities; rather, it adds flexibility to the mix
that will allow for humbleness: an opportunity for nurses to seek out and locate the
best resources for their patients and families.
cultural humility in the practice of palliative nursing care. The following section
will be organized using the primary categories for nursing intervention: assessing,
planning, intervening, and evaluating. The materials included here should useful as
nurses expand their skill set to include the convergent components of orientation
and opportunity.
ASSESS
George, from our opening case study, has troubling concerns that patients in his cen-
ter might be engaging in a cycle of treatment that will ultimately lower their quality
of life at the end of life. At the heart of his angst is the realization that communicating
about treatment options and care plans are not a regular part of care for the major-
ity of patients on dialysis. In the case we share, he worries for Lanz. George has not
identified the time or the manner in which to talk with Lanz about his care options,
or how he and his family might feel about those options in light of their cultural ori-
entation and family structure. Even more difficult, George does not know what Lanz
understands about his current dialysis care and his overall disease trajectory. He is
sensitive to Lanz’s age, his rich Italian-American culture, and their shared patient–
nurse relationship.
Multiple assessment tools for patients currently exist. It is important to keep in
mind that the palliative care setting is unique in terms of the potential for patient
weakness and even unconsciousness. For this reason, the family must be consid-
ered central not only in health literacy matters but also cultural humility practice.
Interactions to secure health literacy will more often than not include family and
might well include patients who cannot respond. Though several tools now exists to
assess health literacy, few are available in multiple languages, are simple to employ,
facilitate the workload of nurses, or increase satisfaction for the nurse and the
client(s) (Wallace, 2004).
Remember, health literacy is not limited to reading alone, but also writing, listen-
ing, speaking, numeracy skills, critical thinking, decision making, and cultural sen-
sitivity abilities (i.e., crossing over to the world of medicine/health care) (Singleton
& Krause, 2009). The connection between literacy and culture is inextricable. What
patients/families face in the Voice of Medicine explains a great deal of the health lit-
eracy load in addition to cultural barriers that can reduce success in care. Often there
is a simple overestimation of patient/family ability to absorb terminology (i.e., aural
literacy demand), make sense of rare words, or stay focused in the midst of words
and ideas that invite worry and anxiety (i.e., “The doctor noted a new mass on your
skull. Had you felt any headaches or other new symptoms?”) (Koch-Weser, Rudd, &
DeJong, 2010).
Many assessment tests are geared for English speakers and readers, which already
assumes too much about a patient/family. In a recent study of English-speaking
Americans who predominantly possessed their high school diplomas, nearly half of
them indicated discomfort in taking either the REALM (Rapid Estimate of Adult
Literacy in Medicine) or the s-TOHFLA (short Test of Functional Health Literacy in
69 Orientation and Opportunity
Table 3.2 Checklist of Observable Cues Indicating a Need for Health Literacy and/or
Cultural Accommodation
Does patient/family display a disinterest in reading a form/instructions? y/n
“I’m too tired for this.” “I need my glasses for this.”
Is it hard for the patient/family to locate a central focus on the text? y/n
Have answers such as “no” been provided to questions asking for more y/n
information or a description?
Is there a general state of withdraw from the interaction? High nervousness? y/n
Confusion?
Have there been errors in medication, appointment times, treatment y/n
understanding?
In a shame-free environment that encourages the patient/family to share y/n
information, is the patient/family difficult to engage? Offended? Irritable?
Behavior from patient/family demonstrates that information is being withheld. y/n
Adults) (Ferguson, Lowman, & DeWalt, 2011). Many scholars warn of the stigmatiz-
ing effect of a literacy test for patients when they are already facing frightening news,
changing circumstances, and a culture of medicine that is foreign to their Lifeworld.
There is fair evidence that suggests the possible harm of literacy testing outweighs the
benefits of such testing (Paasche-Orlow & Wolf, 2007). Shame and alienation can take
the place of the best intentions to converge, or find common ground with a patient.
An additional challenge lies in the sometimes expert ability of patients and families to
conceal their confusion or lack of understanding so that it can be impossible to know
there is a lack of health literacy, or perhaps this occurs quite unintentionally as this
has been a survival technique (Cornett, 2009). And so for these complex reasons, the
clinical skills practice recommendations we make to support orientation and oppor-
tunity showcase accommodation in communication through cultural humility and
low–health literacy assumptions.
Simple observations can tell the practitioner something about patient/fam-
ily health literacy. Even if observations do not specify the communication chal-
lenge to be one of culture or health literacy, it suggests that further investigation
is needed. Table 3.2 is a basic list of clues that might indicate an existing barrier in
communication.
Targeted questions about communication are a good way to assess how the patient/
family are processing information, the environment, and their treatment choices.
Table 3.3 presents researched questions, or prompts, that can quickly identify compre-
hension and engagement (to a degree) between patient and nurse, but could also be
used between family and nurse.
COMFORT advocates for narrative care, in which the nurse is mindful of the
patient/family, and privileges their experience and concern. While the previous two
assessment items are proven to identify language deficits in health literacy, the fol-
lowing tools also attend to the special challenges of cultural humility and Lifeworld
discernment in palliative care.
70 communication in palliative nursing
Table 3.4 Questions Specific to Palliative Care Topic for Patient and/or Family
x How can we help you live in the best way possible for you?
x How would you like to spend your time together?
x What experiences are most important or meaningful for you?
x What fears or worries do you have about this illness?
x Do you have other worries or fears?
x What do you hope for your family?
x What kinds of needs does your family have?
x What is the hardest thing in your life right now?
x What religious or spiritual beliefs are important to you?
x What would make this time in your life (lives) meaningful?
x What makes life worthwhile?
x What kinds of medical care are unacceptable to you?
Excerpted and adapted from Dahlin, C. (2010). Communication in palliative care: An essential
competency for nurses. In B. Ferrell, & N. Coyle (Eds.), The Oxford Textbook of Palliative Nursing
(3rd ed., pp. 107–133). New York: Oxford University Press.
71 Orientation and Opportunity
x Are there any ceremonies or rituals after death you would like us to know about and
facilitate?
x What is your sense of what happens after death?
x Can we help in planning for anything you might need at death or after?
x In your family/background, do family members participate in the care of the body after
death?
x Do we need to specify a man or a woman caring for you/yours after death?
Excerpted and adapted from Mazanec, P., & Panke, J., (2010). Cultural considerations in palliative
care. In B. Ferrell, & N. Coyle (Eds.), The Oxford Textbook of Palliative Nursing (pp. 701–711). New
York: Oxford University Press.
A culture-specific set of prompts that attends to ways in which a clinical team can
accommodate difference is useful in achieving convergence with a patient/family and
also builds shared meaning with them (Tables 3.4 & 3.5). These prompts also clarify if
there will be a need for an interpreter to share the spoken word.
PLAN
Even one of the above assessment prompts could have been the opening to a con-
versation between George and Lanz. Based on information gathered, George could
have identified a useful plan of action that would lead to the best care plan for
Lanz at the end of his life. Once a nurse gains an understanding of the patient and
72 communication in palliative nursing
family through observing cues and exploring their Lifeworld through specific ques-
tions, a fairly grounded sense of health literacy as well as cultural specificity can be
discovered. Based on the nurse’s interaction, which is most productive if it avoids
a checklist of traits and invokes instead curious inquiry that facilitates storytelling
and learning about the values important to a patient, she or he will be prepared to
identify a basic plan to move forward in securing orientation and opportunity for
this patient/family. Communication accommodation through convergence will be
possible.
Identifying what to plan for a patient and family is the next step. Selecting areas of
need on the checklist below (Table 3.6) will assist in determining what kinds of inter-
ventions might best suit a nurse and patient/family.
The nurse should anticipate multicultural identities, not simply a cultural code that
aligns with a list of cultural group descriptors. A patient/family might appear to be
the same ethnicity as the nurse—even from the same place. But expect the unknown,
and the nurse should avail her or himself to this opportunity to be taught about these
unique individuals. Because of this, inviting the patient/family into the planning pro-
cess will be beneficial to the practice of palliative care. We suggest the following ques-
tion as part of any planning process:
As I participate in your care, can you think of some specific things that would
make you more comfortable with the information we are talking about? Or make
the information more clear?
Identifying concerns that need to be addressed and how to plan for the best care as the
nurse moves forward beyond assessment will help create the most useful intervention.
These points of awareness will also advance the application of communication accom-
modation directly to and for the patient in palliative care by providing tailored and
patient-specific convergence to increase nurse–patient message success.
Table 3.6 Planning for Low Health Literacy and Cultural Humility Intervention
✓ Reading or vision deficit ✓ Memory or cognitive deficit
- Clear speech - Repeat and question
- Well-described examples - Multiple message channels
- “Living room” language
✓ Medical culture divide ✓ Hearing deficit
- Examples from Lifeworld - Create visual message channels
- Elicit stories from Lifeworld - Employ interpreter and family support
- Open-ended opportunities for talk to clarify messages
✓ Language difference ✓ Pain (emotional/physician/social/spiritual)
- Translator Compromise
- Language-appropriate materials - Team members
- Open-ended opportunities for talk
73 Orientation and Opportunity
INTERVENE
A potential intervention for Lanz might have involved George arranging a time to
talk with Lanz and his sister and niece during the last visit to the Dialysis Center.
This conversation might have led to George’s coordination efforts of care for Lanz,
including a visit from a social worker, subsequent advance directive, and a more
peaceful death with fewer extreme medical interventions in his last days of life. Lanz
was clearly tired of his dialysis treatment the day of his last visit. George, in reflec-
tion, regrets their lack of discussion about quality of life. They shared trust and care
over time, but never the planning conversations that could also have accompanied
that close patient–nurse dynamic.
Partnership communication style Build trust and openness. Let patient/family decide
when teaching session should
be—best time of day.
Nurse values patient/family Facilitate disclosure. “I want to hear about the
agenda. concerns that are important
to each one of you.”
Nurse values biopychosocial Learn about Lifeworld of Take a few minutes to ask
perspective. patient and family. about family outside of the
hospital/clinic.
Not a static notion of culture Commit to learning about Listen to/ask about a typical
competence the specifics of this patient/ day in wellness. Ask more
family. questions. And then more.
Clear pathway created for patient Create opportunities for Listen. Take time. Be aware
telling/family telling of illness or narrative sharing. of the message you might
wellness story send that indicates you don’t
have the time.
Nurse relinquishes the role of Establish Learn from patient/family
expert, becoming student of the person-centeredness and about what they think is
patient/family. build a relationship. important. This will guide
your care.
Expression that patient and Empower patient and - “We are in this together.”
family are full partners in care family. - “Thank you for teaching
alliance me.”
- “You help me understand.”
Aspects of intervention adapted from Tervalon, M., & Murray-Garcia, J. (1998). Cultural humility
versus cultural competence: A critical distinction in defi ning physician-training outcomes in mul-
ticultural education. Journal of Health Care for the Poor and Underserved, 9, 117–125.
74 communication in palliative nursing
The clinical skill intervention we want to detail first in this section is one that might
accompany or supersede other interventions simply because it is also a way of practic-
ing that coincides with the primary concern of this chapter. Person-centered inter-
viewing and care are an extension of the ideas we describe in Chapter 2. But here we
also apply the idea of cultural humility to person-centeredness. Listed above are basic
components of this kind of interviewing (Table 3.7). Communication is the kind of
care that provides the comfort here.
Communicating comfort can be the intervention. As we describe in Chapter 2,
person-centered messages are built verbally and nonverbally. Table 3.7 reflects this
idea.
Table 3.8 presents a wide variety of interventions that the nurse might pursue
depending on the needs noted during assessment and planning.
Failing to communicate with a patient/family because of low health literacy and/or
cultural differences is costly and contributes to burnout and high time costs later in the
course of care (Geller, Bernhardt, Carrese, Rushton, & Kolodner, 2008). By combining
basic interventions with person-centered communication, palliative care nurses can
break through barriers of low health literacy and cultural unfamiliarity and perform
meaningful care on behalf of their patients.
Consider the following example:
Mr. Gomez was a 60-year-old, very stoic man who was diagnosed with late-stage pan-
creatic cancer. Unfortunately, Mr. Gomez had extensive disease including liver and renal
involvement at diagnosis. He and his family were presented options for chemotherapy,
but they have declined treatment. His wife and children are also very stoic and private. A
social worker has now discussed discharge and has suggested referral to hospice. Mr. Gomez
and his family adamantly decline hospice. His wife is silent but shakes her head “no,” a
daughter utters “no way,” Mr. Gomez becomes tearful, and his eldest son speaks up to say,
“No thank you. No hospice. We can take care of our father.” The social worker shares this
information with the primary nurse, who is very concerned about this patient and family
going home alone as Mr. Gomez has extensive pain and other symptoms and she expects
he will decline rapidly. The nurse goes to the patient’s room and asks if she can talk with
the family.
She begins the conversation by saying; “I wanted to talk with you all as we plan to
get you home tomorrow, Mr. Gomez. The social worker shared with me that you were
not interested in having Hospice come out to see you. I have noticed what a wonderful
caring family you are and that you all want to provide the best care for your father.
We have found that hospice can be so helpful to patients and families like yours. I am
wondering if you can tell me more about why you are reluctant to have hospice come to
visit you at home?”
Note that in this nurse intervention, the nurse shows convergence by commu-
nicating her observations of their family. Additionally, this nurse provides under-
standing of who can be helped by hospice. In order to show humility toward this
family and understand their concerns and needs, the nurse asks them about their
reluctance.
75 Orientation and Opportunity
Message Living room language “If your legs swell, we need to check
accommo- - Speak simply. for a blockage in the deep veins of your
dation - Remove medicalization of legs.”
description. As opposed to:
- Keep content practical but not “There is a possibility of deep vein
so oversimplified that patient is thrombosis. If we suspect this, we will
bored or offended. perform a doplar.”
Return demonstrations “Do you feel like you can show me the
- A volley first step now that I have shown you?”
- Nurse shows, then patient or “Once we are all feeling confident, we
family shows how to accomplish can go on to the next part.”
something.
(continued)
76 communication in palliative nursing
Send video recording home. Patient and family might find it useful
- Patient/family will process to share this with others to help them
information differently. communicate about their illness, or to
- Access to this visual/audio is simply revisit some ideas that are hard
immensely helpful to patient/ to face or understand.
family in navigating new ideas.
(continued)
77 Orientation and Opportunity
(continued)
78 communication in palliative nursing
Principally, whatever intervention a nurse selects, the patient and then family
should be considered. Patient/family anxiety, stressors, embarrassment, shame, lan-
guage, eyesight, hearing, mental health, and confusion should be your guide. Timing
for these interventions is also important. If the morning is harder for this family,
work with them at a different time. Or if a patient is too sick, unresponsive, or has
just been given very bad news, gauge what information must be passed on to his or
her family.
EVALUATE
Without any intervention, George is left with the heavy emotional toll of regret and
worry. What about his other patients? What can he do for them? What should he do
for them? Palliative care nursing is communication heavy in its task/relational load.
Patients and families as well as professional teammates are the best barometer for eval-
uation of intervention and care. Without reflecting on care and communication, cli-
nicians will learn little and grow less in their ability to deal with difficult cases and
cultural specificities that have not been experienced before. Reflection is the most val-
uable part of evaluation in palliative care. Cultural humility, mindfulness (Chapter 4),
teamwork (Chapter 8), and self-care (Chapter 9) are accomplished, in part, through
reflection.
Each nurse will have his or her own experience with the care of a patient and family
and will learn from that unique relationship. It is important to find out from patients
and families about their experiences accessing information and treatment options. To
79 Orientation and Opportunity
“Let me know in your own words if I am doing an okay job.” - Patient - Spoken
- Family
- Team
“How would you explain your treatment (or care) to your - Patient - Spoken
friends?” - Family - Written
“How would you explain your (this) illness to your friends?” - Patient - Spoken
- Family - Written
gain this information, ask questions at any point in their care, or even once patient/
family care is complete. Table 3.9 provides some specific prompts that can provide pal-
liative care nursing feedback.
CHAPTER SUMMARY
Orientation and opportunity are provisions of care that a nurse can provide and impact,
primarily through successfully created and sent messages. It is difficult to be successful
in sending messages to a patient and family if they remain unstudied to the nurse. Our
position in this chapter is that all patient/family health literacy levels and cultural differ-
ences must not be essentialized or assumed based on appearance or ethnicity.
Communication accommodation theory (CAT) grounds the themes in this chapter
and therefore is a very useful foundation as nurses consider all patients and families
unique in their (1) cultural specificity, and (2) health literacy challenges. CAT includes
three categories of accommodation that occur in all interactions. Convergence is
accommodation characterized by aligning and adapting communication acts that are
beneficial to the interaction and relationship.
The unique world of health care establishes a culture of medicalization that any
patient must navigate. We present the Voice of the patient’s everyday Lifeworld in jux-
taposition to the Voice of the Medicalworld. Both Voices represent radically different
perspectives on a topic, or description of a problem. This difference in Voices is a cul-
tural challenge in and of itself.
So how can nurses communicate using convergence in the face of these unique
patient/family needs? This chapter advocates that person-centered interaction that
privileges the narrative of the patient/family is the primary tool to accomplish con-
vergence. We include several assessment, planning, intervention, and evaluation tools
that will facilitate nurses to reach that narrative and employ its contents in reaching the
patient/family where they are in the health literacy levels and cultural understanding.
Reflection plays a helpful role for the nurse in building patient/family-centered com-
munication. This idea will be further explored in Chapter 4—“Mindful Presence.”
80 communication in palliative nursing
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82 communication in palliative nursing
DISCUSSION QUESTIONS
1. Name a negative communication outcome in the clinic/hospital that could have
been prevented if culture had been approached with humility.
2. Share an example of the dueling discourses of the Lifeworld and Medicalworld
from a patient/family interaction.
3. If a patient met with a nurse alone (no family) about what symptoms to expect
in a very aggressive round of chemotherapy for Stage IV liver cancer and
appeared not to be engaging any patient education material about preparation
and side effects, what could a nurse do to ensure the messages being sent are
actually successful?
4. What is the difference between cultural competency and cultural humility?
5. Share an example of overaccommodation from the clinical setting.
6. How can divergent messages alienate a patient and family receiving care?
7. How could the ideas of orientation and opportunity be central to quality of life
in a patient/family receiving palliative care?
8. What is the role of reflection in gathering a patient/family narrative?
9. What are some ways in which nurses could teach nurses about cultural humility?
10. How is it possible that an individual who does not fit the low–health literacy
profile (socioeconomic/minority/age) could experience low health literacy in the
palliative care context?
teaching resources and materials
Each day nurses practice in an increasingly diverse patient population in which they
will encounter language, culture, and health literacy challenges. The literature in nurs-
ing care indicates that cultural and low-literacy challenges are joined inextricably, yet
nursing education and training provide minimal assistance for nurses to navigate these
challenges (Singleton & Krause, 2009). There is no other practitioner as well posi-
tioned as the nurse to understand the interconnections between culture differences
and low health literacy to improve health outcomes.
What we also observe in the literature is a gap in any resource or research that
explores the family role in culture difference and low health literacy as it affects
palliative care communication. In this section we provide some materials to use
with nurses in training that will address these issues and others identified in the
chapter.
Roles: Pat—NP
Lou—Oldest Daughter
83
84 communication in palliative nursing
Ella—Middle Daughter
CiCi—Youngest Daughter
Discussion Questions
1. What are some cultural assumptions about the Mexican-American family that this
family did not possess or demonstrate?
2. How did our NP go about gaining information about their specific story and
potential health literacy levels?
3. How did our NP demonstrate convergence? Divergence? Overaccomodation?
Discussion Questions
1. Do Boka and Leng understand what is happening to their child?
2. What sorts of assessments should have been gathered early on in the care of Boka?
3. What kinds of planning and intervention might have been effective with this
family?
4. At what point might a nurse request a palliative care team consult or other
support for this family?
85 Orientation and Opportunity
1. Who tells the story? Who tells the story of the protagonist? To whom is the story
told? What insights, biases, and limits does the narrator have?
2. How do you as a nurse assess the main character?
3. Your assessment should address the following:
a. Language
b. The characters’ self-esteem during care
c. Strengths and weaknesses in advocating for care
d. If you were the nurse in the story, would you do anything differently to address
the needs of ___________? To better intervene between the family and the doctor?
What would be your difficulties?
More than a Case concept adapted from Slade, D., Thomas-Connor, I., & Tsao, T. (2008). Using
pathography to develop nursing students’ culturally competent selves. Nursing Education Perspective,
19, 151–155.
options. In brief, this family engages in overtreatment of end-stage cancer days from
death as a result of low health literacy, though their profile might not readily indicate
low health literacy. This is a white family from West Oklahoma. Both husband and wife
are college educated and very wealthy owners of power companies in this part of rural
America. If tested on basic reading and language literacy, both spouses would likely rate
as highly literate. But their health literacy requires information processing and decision
making far beyond language use and comprehension. This family exemplifies the low
health literacy that many families exhibit when navigating a terminal diagnosis.
This unfolding case can be used in many pedagogical ways. The more that participants
are with one another and with their own thoughts, the more useful. Arranging students in
dyads or triads per segment of the case and then regrouping to share their discoveries in
the sequence of the story might be the most powerful use of this classroom tool.
July 10, 2009—Steve, a resident of rural West Oklahoma, thinks he has pneumonia
and sees a local family doctor with his wife. His symptoms include labored breath-
ing and exhaustion. Steve’s physician diagnoses him with gall bladder inflamma-
tion and sends him on to a local surgeon, Dr. A. At the end of this appointment,
Steve and his wife Amy talk casually with the nurse about the nuisance of surgery
in a busy life.
July 11, 2009—Dr. A. indicates that he is not sure the difficulty is gall bladder. After
the meeting with Dr. A., the nurse meets with Steve and Amy and tells them that
Dr. A. is sending Steve to the local hospital to arrange for tests. They press her on
the change of plans and why a CT scan and blood tests were ordered. They won-
der if they should be worried. The nurse assures them that this is likely routine, a
“bump in the road.”
The wife, present in the technician’s booth during the CT exam, notes white spots
throughout the scan and converses with the technician about the test. The techni-
cian inquired, “Is he really supposed to have gall bladder surgery tomorrow?” That
evening Dr. A. called Steve’s home and notifies his wife that there are spots on
Steve’s liver and summons them both to the hospital ER immediately.
Assume that you are Dr. A.’s nurse and you must disclose that gall bladder surgery
will not be performed in lieu of further testing. How you would communicate this
information? How would you respond to Steve and Amy’s concern? What you say to
Dr. A. in preparation for your task and following this disclosure to patient/spouse?
July 12, 2002—A scope of Steve’s lower colon is positive for tumor activity. Dr. A.
diagnoses Steve with colon cancer. A liver biopsy is positive for cancerous tissue as
well. Dr. A. suggests to Amy that they do not pursue surgery, chemotherapy, or any
further treatment. Dr. A. does not tell Steve this. He has this conversation with the
wife in front of several people in a hospital hallway. Steve is left alone in a hospital
room unaware of his condition, Amy stops a nurse who has only been on the floor
for an hour that day. Amy is sobbing and hysterical. She begs the nurse to explain
the diagnosis and what they can do. Knowing that Amy is in crisis and having little
information about Steve’s case, what would you include in your conversation with
Amy? How could you move forward from this moment?
87 Orientation and Opportunity
July 14–20, 2009—The family goes on to a cancer center in Oklahoma for care.
Oncologists perform additional testing and alter the diagnosis from colon can-
cer to adenocarcinoma of unknown primary site and suggest the family travel to
MD Anderson Cancer Center. An advanced practice nurse meets with Steve and
Amy to arrange referral plans, and Steve and Amy ask her if this is “good news?”
They believe the doctors’ referral to MD Anderson to be an indication of a pos-
sible cure.
Knowing that Steve is suffering from metastatic adenocarcinoma of unknown pri-
mary, how would you talk to him about his care, how to proceed, and issues to
consider in his decision making?
July 20–August 10, 2009—Steve and Amy wait for an appointment at MD
Anderson. In this interim Steve becomes jaundiced; his urine is brown and reduced
in quantity. Steve receives IV fluids from the local Cancer Center and is then trans-
ported to Houston.
August 11–12, 2009—MD Anderson repeats CT and MRI scans; tumor activ-
ity in Steve’s body is accelerating. These tests are compared with the tests from
Oklahoma taken a few weeks before. The liver has become mostly cancerous in a
matter of 3 weeks.
Assume you are the intake nurse meeting with Steve and Amy. What would you
do next in assessing their understanding of his diagnosis and his care options?
The fellow for the GI (gastrointestinal) clinic meets with Steve’s wife. Steve is too
ill to participate in the conversation and is being admitted to the hospital. A Fellow
tells Amy that Steve will die and that there is no hope. Amy demands to see the
lead doctor and insists they receive chemotherapy. A nurse asks Amy to wait and
locates Dr. C., who explains the prognosis to the wife and why treatments do not
work but says he will try chemotherapy. He explains this therapy will probably not
help Steve and will make him sicker. The nurse returns to arrange chemotherapy
at the clinic later that day.
Steve receives chemotherapy that evening and becomes more ill with severe nausea
and vomiting and worsening pain.
Put yourself in the position of the GI clinic nurse. What opportunities could you
take to engage Amy and Steve in orientation and opportunity talk? What strate-
gies could be employed in talking with Dr. C. or the Fellow about Steve and Amy’s
acceptability and plan of care?
August 13, 2009—Steve becomes very ill in their hotel room. Dr. C. recommends Steve
go to MD Anderson ER. Steve waits for several hours until he can receive fluids.
August 14, 2009—Steve needs fluids again but is too ill to go and wait for them.
Dr. C. sends a nurse to their hotel with fluids. Steve stays in bed vomiting. He has
not urinated in 24 hours.
Put yourself in the visiting nurse position; what are some ways the nurse could
engage Amy in considering options for care at this point in Steve’s illness?
August 15, 2009—Amy sends for private plane to fly Steve home from Texas to
Oklahoma as Steve is too ill to travel by car or commercial air. Steve and Amy
return home.
88 communication in palliative nursing
August 16–30, 2009—Steve never leaves his bedroom again. He stops eating and
eventually stops talking. He becomes confined to bed and his pain increases expo-
nentially. Steve’s original GP, diagnosing him with gall bladder problems, visits and
prescribes pain medication in the last week of Steve’s life, but soon Steve is unable
to swallow the pill form of the medication that has been prescribed.
What do you see as the most crucial opportunity for a nurse to have made a more
positive impact on the outcome of this case in terms of orientation and communi-
cation with the patient/family about care options?
they ask me what he/she meant. The MD is usually in a hurry. The units are so
busy that the staff does not have enough time to sit down and really talk/listen
to the patient/family.
- I don’t have the ability to predict the best method of information delivery with
patients of all different educational and socioeconomic backgrounds.
- It is challenging to communicate how a patient/family can perform self-care, or
manage himself or herself at home with a new permanent ostomy or new diag-
nosis that needs lifelong intervention.
- A brain-dead patient’s family did not understand that body circulation does not
equate to the possibility of survival/recovery after explanations from the physi-
cian that the brain was not working. After prolonged lack of oxygen, there was
no chance of brain function getting better.
This concept is adapted from Aronson, E., Blaney, N., Stephin, C., Sikes, J., & Snapp, M. (1978). The
Jigsaw Classroom. Beverly Hills, CA: Sage Publishing Company.
Table 3.10 Communication Adaptations for the Deaf or Hearing Impaired Patient/
Family
x Find out how your patient/family would prefer to communicate.
x Communicate with intended party, even if you are using a translator or signer.
x Inquire about patient/family interest in an American Sign Language translator.
x Let the entire staff know about hearing compromise.
x Keep writing material accessible for anyone to use.
x Use instructional videos with captions.
x Use relay service telephone calls or videophone.
Adapted from Ruccione, K. (2004). Coming to terms with language. Oncology Nursing Forum, 31,
913–925.
Adapted from Speros, C. (2009). More than words: Promoting health literacy in older adults. Online
Journal of Issues in Nursing, 14, Manuscript 5.
EthnoMed
http://ethnomed.org
91 Orientation and Opportunity
- The EthnoMed site contains information about cultural beliefs, medical issues, and
other matters pertinent to health care of recent immigrants to the United States.
Ask Me 3
http://www.npsf.org/for-healthcare-professionals/programs/ask-me-3/
ask-me-3-resources
- A site dedicated to improve communication between providers and patients.
Includes toolkits, fact sheets, reproducible brochures, guidelines, and more
Doak, C., Doak, L., & Root, J. (1996). Teaching Patients With Low Literacy Skills.
http://www.hsph.harvard.edu/healthliteracy/resources/doak-book/
- Book included in supplemental section is available on the Harvard site in pdf
Clear and Simple: Developing Effective Print Materials for Low Literate Readers
http://cancer.gov/cancerinformation/clearandsimple
- An outline for procedures to develop publications for people with limited
literacy skills
Elizabeth is a night shift nurse in the surgical ICU in a large teaching hospital.
She has been a nurse for 5 years and chose the ICU as the setting for her work as
she was intrigued by the fast pace, patient acuity, and complexity of the patients
and their families. She loves the opportunity to care for the sickest patients and
feels fortunate to work in an academic center where she is a part of a team and
there are always opportunities to learn.
Over the past year, the ICU has been receiving more cancer cases as the hos-
pital has expanded its surgical oncology program. Patients travel long distances
to seek care even when they have often been told surgery is not possible for their
advanced tumors. Elizabeth has felt increasingly frustrated in the care of these
patients, often distressed in cases where very aggressive care is provided with
very invasive surgeries. Sometimes the surgeries are successful but there is tre-
mendous suffering involved; other times, these desperate patients and families
become very difficult to care for when the surgery fails. Elizabeth had begun to
feel like a “senior” ICU nurse, but now she has become uncertain about her work
and ability to provide care.
For the past 2 weeks, Elizabeth has been caring for Mr. Chun, a 70-year-old
Chinese man who underwent surgery for an advanced gastric malignancy. Mr.
Chun was a successful businessman and a very stoic, serious man. Unfortunately,
Mr. Chun developed several postoperative complications including a GI bleed,
liver failure, and respiratory failure. He is no longer verbally responsive and his
prognosis is poor. His wife, brother, 90-year-old father, and three children have
refused a family meeting, and each has insisted that the hospital keep focused on
Mr. Chun’s survival. Mr. Chun’s oldest son is serving as the family spokesperson
and proxy decision maker. He has become hostile and very angry, especially if
there is any mention of his father’s poor prognosis.
Elizabeth is caring for Mr. Chun on the night shift, and his oldest daugh-
ter, Chin Lee, returns late at night and asks if she can sit with her father. She
has always been very quiet, deferring all decisions to her brother. Elizabeth
begins her routine care for Mr. Chun, checking his ventilator and drains and
administering his many IV medications. She notices that Chin Lee is quietly
weeping, and she senses her extreme anguish and grief as she watches her
93
94 communication in palliative nursing
father, a vulnerable and weak man now with a ravaged and debilitated body
burdened by the many high-tech treatments. Elizabeth continues her patient
care as she considers how best to respond to Chin Lee and what she can pos-
sibly offer to this daughter.
In the case study above, Elizabeth finds herself in a position that palliative care nurses
face continually in their work: uncertainty in dealing with patients and families in the
face of failed surgeries or other treatments and poor prognoses, particularly when the
patient is no longer verbally responsive, and his family members refuse to meet to dis-
cuss care plans. This case is complicated in particular by the patient’s Chinese culture,
whose traditions mandate that oldest sons speak for their families—Mr. Chun’s son,
angry and hostile because of his father’s condition after surgery, only wants to focus on
his father’s survival. And yet Elizabeth discovers Mr. Chun’s oldest daughter, Chin Lee,
weeping in anguish in her father’s hospital room. In the absence of a family meeting at
which the palliative care team might help the family to discuss their possibly conflict-
ing views concerning the care plan for Mr. Chun, Elizabeth must discover other means
of ministering to this mute patient and his family, particularly at this time focusing on
his distressed daughter.
This chapter introduces the “M” concept in the COMFORT model, mindful pres-
ence. It details the concepts of mindfulness and presence, two nonverbal behaviors
that nurses can bring to patients/families when verbal behavior is necessarily limited
(as with Mr. Chun), but that also can be practiced in any patient/family interaction.
Drawing on the research in both mindfulness and presence (often called compassion-
ate or healing presence in the nursing literature), we have combined these concepts
into an essential nonverbal communication skill, mindful presence. The discussion will
also deal with empathy and active listening and will point out how essential these
competencies are for palliative care nurses and for the practice of narrative nursing.
The chapter then will discuss the importance of a nurse’s intercultural sensitivity in
the care setting. It will conclude with a brief look at the philosophical underpinning of
our notion of mindful presence—Martin Buber’s I-It/I-Thou dialectic.
MINDFULNESS
The term “mindfulness,” which originated in Buddhist philosophy, has been appro-
priated by a multitude of disciplines, including clinical psychology, social work, psy-
chotherapy, medicine, and other helping professions. This section will look briefly
at the tenets of mindfulness and will provide a rationale for what we believe is a
more accurate descriptor of the communication behavior required for palliative care
nurses—mindful presence.
In its classic sense, mindfulness describes an aspect of Buddhism that has been in
existence more than 2,500 years, only gaining acceptance in the Western world for
about the past 25 years (Day & Horton-Deutsch, 2004) as we began to recognize the
relationships between our emotions and our physical and mental health. Essentially,
mindfulness “is a state of being purposefully attentive to one’s moment-by-moment
95 Mindful Presence
experience,” (Day & Horton-Deutsch, 2004, p. 165), but this attentiveness also
includes an awareness of one’s own maladaptive cognitive habits that impede per-
sonal growth and understanding (Goleman, 1997; Kabat-Zinn, 1990). Hirst (2003)
describes mindfulness as “an awareness of being aware” (p. 360) that requires con-
centration and attention to being present in the current moment. Discussing mind-
fulness as it pertains to learning, Langer (1992, 2000) states that mindfulness entails
a flexible state of mind and an active engagement in the present, a noticing of new
things and a sensitivity to context. He contrasts it with mindlessness, which is linked
to habitual behaviors performed without attention: for example, predictable emo-
tional responses, fantasizing, worrying about the future, living with anger and hate,
and indulging in addictive behavior.
Importantly for our discussion, however, mindfulness in its truest sense is a skill
that is highly disciplined and whose cultivation and therapeutic usefulness man-
date training and daily meditation (Day & Horton-Deutsch, 2004; Kabat-Zinn, 1990;
Kabat-Zinn, Lipworth, & Burney, 1985). In fact, the skill of mindfulness is developed
through meditation (Hirst, 2003), and its therapeutic usefulness frequently involves
the teaching of Buddhist meditative practices. Mindfulness as meditation has been
empirically investigated in a number of therapeutic settings, most frequently as a
stress reduction technique in cognitive therapy and as a supportive therapy in the
treatment of cancer patients. For example, mindfulness-based therapeutic interven-
tions have been successfully utilized in psychiatric nursing (Day & Horton-Deutsch,
2004) and in cognitive therapy (Davis, 2007); mindfulness meditation has been taught
to dementia caregivers (Oken et al., 2010); mindfulness-based stress reduction tech-
niques have been utilized for both patients and health professionals (Cohen-Katz,
2004; Praissman, 2008), and mindfulness skills training has been utilized in clinical
social work (Turner, 2009). In oncology nursing, mindfulness meditation has also
been a potentially beneficial intervention for cancer patients (Matchim & Armer, 2007;
Ott, Norris, & Bauer-Wu, 2006). Smith, Richardson, Hoffman, & Pilkington (2005)
found that mindfulness-based stress reduction is a potentially valuable intervention
for improving mood and sleep quality and for reducing stress in cancer patients. Ott
(2002) utilized mindfulness meditation successfully in pediatric clinical practice. Keep
in mind that all of these studies have involved the teaching of Buddhist meditation, a
requisite skill for the practice of mindfulness.
Thus, while our communication tenet for palliative care nursing, mindful presence,
adopts many of the concepts entailing Buddhist mindfulness, it does not advocate
meditation as a requisite skill in the practice of being mindful. Rather, mindful pres-
ence involves a nurse’s being nonverbally present for a patient/family while also being
attentive, in the moment, nonjudgmental, and empathic. These ideas will be unpacked
in the following section.
MINDFUL PRESENCE
Rapgay and Bystrisky (2009), in an article that differentiates classical mindfulness from
the popular use of the word, state that popularized versions of mindfulness consider
96 communication in palliative nursing
the formal practice of daily training and meditation too demanding; the Buddhist
model of mindfulness has been altered to a “more general concept of being mind-
ful, i.e. attentive to present moment experience” (p. 149). In particular, being mindful
requires a nonjudgmental awareness of the present moment, being experientially open
and accepting (Rapgay & Bystrisky, 2009).
Anthony and Vidal (2010) discuss mindful communication as a way of improving
delegation and increasing patient safety; they define mindfulness as “a state in which
there is keen awareness of the situation; it is being ‘in the moment,’ and a way of direct-
ing or focusing attention of everyday tasks to the present moment” (p. 8) It is this
adaptation of mindfulness as mindful communication that we find most engaging as a
skill in the practice of palliative care.
PRESENCE
Mindfulness and presence are frequently discussed in tandem in the clinical psy-
chology literature. Childs (2007), for example, cites Kabat-Zinn’s (1991) seven
attitudinal foundations of mindfulness as conveying “an attentive, unprejudiced
present” (p. 369): acceptance, patience, trust (in one’s own intuition), nonjudg-
ing, nonstriving, letting go, and beginner’s mind (seeing everything as if for the
first time). Personal preference and critical thought are suspended when one is
mindful. “The word ‘presence’ is a useful summary of this account as it conveys
both present time and person present, a ‘now’ and an awareness attentive in it.
Presence requires practice and emphasizes personal experience. You have to be
there” (Childs, 2007, p. 369).
In the nursing literature, the word “presence” is more typically used to convey
many of the attitudes of mindfulness that Kabat-Zinn espoused. Often this presence is
referred to as “compassionate presence” or “healing presence,” both terms referring to
the nonverbal attentiveness and the attitudes that a mindful communicator employs.
Simon, Ramsenthaler, Bausewein, Krischke, and Geiss (2009) interviewed palliative
care professionals who described the core attitudes of professionals in palliative care.
Interviewees listed the personal characteristics of authenticity, personal presence, hon-
esty and truthfulness, openness, unconditional positive regard, and mindfulness as part
of these core attitudes. Authenticity is seen as being present and accessible rather than
behaving in a specific role; personal presence is described as a feeling of “completely
being in the here and now” (p. 408), of focusing on the other person. Mindfulness is
seen by the interviewees as cautiousness, attentiveness, humility, and acceptance. It
also means nonacting, appreciating the other in his being. As one interviewee put it,
“You know deep inside what is right and I am allowed to be the person that reminds
and supports you . . . again this inner awareness and concentration on the uniqueness
of this person, looking at what is happening” (p. 409). All of the attitudes described
in the Simon et al. (2009) study are relational competencies that palliative care profes-
sionals exhibit with their patients—these competencies in care can be seen in Table 4.1
(Simon et al., 2009, Table 3, p. 408).
97 Mindful Presence
Used with permission from: Simon, T., Ramsenthaler, C., Bausewein, C., Krischke, N., & Geiss, G.
(2009). Core attitudes of professionals in palliative care: A qualitative study. International Journal of
Palliative Nursing, 15 (8), 408, Table 3: Concept of Core Attitude in Palliative Care.
HEALING PRESENCE
The core attitudes above help to describe the concept of “healing presence” discussed
by McDonough-Means, Kreitzer, and Bell (2004), who state that, while the nursing
literature since the early 1960s has attempted to define presence and its therapeutic
importance, the emerging literature has been more conceptual than empirical. Citing
Gilje (1992) and Gardner (1985), McDonough-Means et al. discuss two dimensions
of presence: physical or “being there” and psychological or “being with.” Physical
presence involves actual proximity to the other—“seeing, examining, touching,
doing, hearing, and hugging or holding” (McDonough-Means et al., p. S-25) whereas
psychological presence entails the skills of “listening, attending to, caring, empathy,
being nonjudgmental, and accepting” (p. S-25). Ferrell and Coyle (2008) cite Benner’s
(1984) work on the significance of presence: expert nurses come to realize that their
“being” is as valuable as their “doing.” Ferrell and Coyle (2008) further state that
“presence is far more than being physically available or offering expert listening skills.
True presence is a sacred act. It is transformative for the nurse as well as for the patient
or family member” (Ferrell & Coyle, 2008, p. 85). We consider “being” and both types
of nonverbal presence—physical and psychological—to be essential competencies for
palliative care nurses.
Eide et al. (2004) explain that patients are hesitant to articulate their emotions
directly and spontaneously, presenting indirect cues to indicate emotion. In a study in
which they coded verbal transcripts of doctor–patient interaction for both explicit and
implicit expressions of emotion, they defined implicit expressions of patient emotion
as “a patient statement from which a clinician might infer underlying emotion that
has not been explicitly expressed” (p. 292). This is shown in the following example in
which a physician is talking with a patient about her hearing loss:
patient: Yes, of course you hear well, but I don’t hear it at all, so that is my
biggest handicap [The researchers coded this utterance as a “potential
empathic opportunity”—PEO—that expressed concern.]
doctor: Yes, it may be that it will get a bit better. I don’t know if it will return
to normal, but I think it’s a bit early to say, so soon after the operation that
I . . . (pp. 292–293).
In this study, the authors concluded that there were four times more implicit than
explicit expressions of patient emotion and that many opportunities to express empa-
thy are missed. They also note that despite the traditional approach to treat patients’
emotions as secondary to their diagnosis and treatment, recent studies show patients’
emotions as integral to their care.
They cite evidence for this in a study by Stewart et al. (1999) that showed that
physician acknowledgment and response to patient emotion results in improved
patient satisfaction, greater probability of adherence to physician recommen-
dations, and measurable outcomes such as improved blood pressure and blood
sugar.
Thus, listening for feelings becomes all important for the palliative care nurse.
In the case study at the beginning of the chapter, Elizabeth relies on the nonverbal
cues of her patient’s daughter—Chin Lee’s quiet weeping—to give her information
about Chin Lee’s emotional state and her possible disagreement with her brother
concerning their father’s care. Being present and empathic in the moment are par-
amount for Elizabeth.
A healing and compassionate presence is discussed by Ferrell and Coyle (2008,
2010) as a requisite for palliative care nurses. In studies dealing with the suffering
of children and their parents, nurses realized that “the greatest relief they could offer
was presence” (Ferrell & Coyle, 2008, p. 73). One nurse in describing her witnessing
of suffering wrote:
Referring again to the opening case study, Elizabeth may not be able to offer the
Chun family any comfort other than “showing up,” witnessing with empathy and a
mindful presence of the suffering of another: “Nurses respond to suffering first and
foremost through presence. As witnesses to suffering, they serve as a compassionate
voice that recognizes the human response to illness amidst the chaos and depersonal-
ization of the health-care environment” (Ferrell & Coyle, 2008, p. 109).
Used with permission from: Wood, J. T. (2000). Relational Communication: Continuity and Change
in Personal Relationships (2nd ed., p. 69). Belmont, CA: Wadsworth Publishing.
the patient. Likewise, Baird believes that deep listening means “hearing what is being
said and what is not being said and trying to understand the emotions and feelings
behind the words” (p. 665). It is allowing the person to be vulnerable in our presence
so that we share in their pain and suffering.
Dahlin (2010) posits four basic elements to communication in nurse–patient rela-
tionships: imparting information, listening, information gathering, and presence and
sensitivity. All of these elements work concurrently for effective palliative care nurs-
ing. Listening requires both presence and attention so that both words and nonverbal
gestures are “heard.” Dahlin notes that it is frequently useful to ask for the patient’s
story with an open-ended question, such as “What brought you to the hospital?” or
“Tell me what has been going on” (p. 114). This permits the nurse to listen actively to
the story while also keenly observing and interpreting nonverbal behavior, particularly
expressions of emotion that might be communicating psychological or spiritual dis-
tress. Dahlin further stresses that silence is a valuable tool for the nurse to utilize—it
permits her to listen without interrupting the patient, to be present in the moment
without mentally preparing answers or replies. Such silence also conveys empathy to
the patient. Just sitting quietly may permit the patient to express a deeper level of con-
cern, and in that silence comes an opportunity and permission to self-disclose.
Case Study
An example is the case of Mildred, a 44-year-old woman being treated in the
oncology clinic for stage IV ovarian cancer. Mildred has opted for aggressive
101 Mindful Presence
chemotherapy, hoping to extend her life to be able to see the birth of her first grand-
child due in 3 months. Mildred’s nurse Karen has watched her patient decline,
becoming more cachectic with many signs that the tumor is progressing and not
responding to treatment. Today as Karen is beginning the fourth chemotherapy
infusion in the outpatient clinic, the physician enters the room and reports that
the ultrasound and lab work have confirmed their worst fear and that the tumor
has now extended to the liver. The physician, a very kind, older oncologist who
is very fond of Mildred, quickly exits, telling Mildred he will be in touch once he
has time to consider other options. Karen finishes connecting the chemotherapy
but remains seated next to Mildred, gently touching her arm in silence, acknowl-
edging the weight of the information she has received. Mildred begins to cry, and
Karen avoids the urge to jump up and get a tissue or to provide false assurances,
and instead, she sits in silence. Moments pass, then Mildred begins to speak, tell-
ing Karen that she knew she was getting worse and how difficult it has been to try
to keep positive and protect her family. Karen remains silent, offering Mildred the
space and security to absorb the latest news and its meaning.
Particularly with a dying patient, Dahlin (2010) notes that “simple presence, listen-
ing, and attending to the basic humanity of the dying patient may be one of the nurse’s
most powerful contributions” (p. 126). Being present for and witnessing the dying pro-
cess is a healing affirmation, even a sacramental gesture. “The communication skills
required include: being present with the patient in his or her state of vulnerability and
decline; consciously and non-judgmentally listening and bearing witness to the patient;
and encouraging the patient to express all feelings while resisting defensiveness if the
patient voices anger or disappointment about dying” (Dahlin, 2010, p. 126).
Something as simple as reaching over and touching a person while he/she is telling
the emotion-filled story can stop the flow and interrupt the process. When these
102 communication in palliative nursing
interruptions occur, there is a good chance that the story, which was so important
to tell, might never again find the opportunity to be told. It takes time, experience,
and thoughtful awareness to learn when to speak, or move, or get tissues. (Baird,
2010, p. 666)
Narrative nursing, the theoretical framework that undergirds the comfort model,
means that nurses can learn to bear witness, to sit quietly, and not to run from another
human who is suffering, even as we experience our own pain and suffering in the
process. It bespeaks a compassionate presence that permits the time and emotional
space for storytelling—that enterprise that is deeply rooted in our humanity and that
connects us to each other as no other form of communication can.
INTERCULTURAL SENSITIVITY
Elizabeth’s awareness of Chin Lee’s suffering tells us that the attribute of mindful
presence is brought to bear when a nurse attends specifically to the moment at hand,
suspends all judgment about what she sees and hears, listens deeply for emotional
expressions, and realizes that her nonverbal presence—both physically and psycho-
logically—may be the most compassionate response she can give to her patients and
their families. In our case study, Elizabeth may choose to sit in silence with Chin Lee,
perhaps touching her shoulder. But she may also decide to verbally communicate with
the grieving daughter by asking her to talk about her fears and concerns. “Please tell
me what you are most concerned about with your father’s care.” “Have you and your
brother discussed this?” These and other questions might elicit Chin Lee’s story about
how she is experiencing her father’s poor prognosis and, possibly, about her culturally
prescribed deference to her brother, which may be contributing to her anguish and
grief. It is important to note, however, that Chin Lee might not be troubled by the cul-
tural value of male dominance; nurses must be cautious to avoid imposing their own
cultural values on those who are culturally different.
Whereas we cannot expect Elizabeth to be knowledgeable about all values and norms
across a wide variety of cultures, a part of displaying mindful presence is being inter-
culturally sensitive (this is also discussed as cultural humility in Chapter 3). Sherman
(2010) discusses this sensitivity as cultural competence, which has four components in
health care contexts:
Used with permission from: Bruce, A., & Davies, B. (2005). Mindfulness in hospice care: Practicing
meditation-in-action. Qualitative Health Research, 15, 1336.
105 Mindful Presence
feeding, sitting with, and listening to residents. They also focused intentionally on
being open and present and on being aware of this intention.
Abiding in liminal spaces: Liminal spaces are those in which such dualities as self–
other, work life–spiritual life, and living–dying dissolve. It is an in-between space—“a
space in the hyphen within living-dying or presence-absence. In this space, oppo-
sites meet in-between, where one is both living yet dying, or present yet absent . . . An
appreciation that opposing tensions of living while dying or being joyful while sad-
dened can be held simultaneously without contradiction” (Bruce & Davies, p. 1336).
Appreciation of liminal spaces also means that caregivers and residents, self and other,
are seen as inseparable: this is integral to empathy and compassion, including self-
compassion. Working for others’ benefit also benefits the self, as described by one
hospice caregiver:
Seeing differently: This is a shift in perception that allows one to notice what has not
been seen before or to appreciate the beauty of the familiar. For example, one hospice
caregiver noted: “Preparing elegant, simple meals; having bright, clean rooms, fresh
flowers, and incense; paying attention to the vital, immaterial space; and catering to the
wishes and whims of residents as much as it was possible contributed to an expansive
environment that could accommodate suffering and peace” (Bruce & Davies, p. 1337).
Mindfulness made hospice workers see what needed to get done in supporting resi-
dents. One hospice worker asserted:
Mindfulness makes me alert to what is happening . . . I see things that I didn’t see
before; I begin to notice. For example, when there is a lot of chaos in the room . . . or,
if the commode is sitting in the middle of the room in the eye-line of the person
lying in bed—is that what she is seeing all day? Maybe it’s a convenient location for
the caregiver but maybe it’s a terrible location for the person in the bed. (p. 1337)
As residents deteriorate and withdraw, requiring less doing from the caregivers, the
lines blur between doing-nondoing: “Leaning into the stillness of whatever activity
they were doing became a meditative aspect of doing” (p. 1337). Seeing differently
also involved cultivating an open attitude, without fixed judgments and expectations,
without a script.
Resting with groundlessness: This involves a realization that change is inevitable:
intellectually grasp this . . . however when we turn the lens of mindfulness on our-
selves we begin to understand that we are change . . . then I can’t hold so tightly to
this notion of solidity . . . then my whole relationship to death changes . . . it dra-
matically shifts . . . and death becomes less of a tragedy.” (Bruce & Davies, 2005,
p. 1338)
Of course, this realization also brings fear and sometimes holding onto hopes that
residents will get better. Hospice workers practicing mindful meditation explored the
question: Can caregivers be open to and witness another’s suffering in the midst of
fear, struggle, and resistance within? One hospice worker noted:
I was thinking of Aretha this morning; she was kind of scared. And I really think
creating an atmosphere where we are not scared when she is scared [is important]
where we are just there with her. And we don’t necessarily do anything with the
fear. We don’t say, ‘no, no, no’ but we don’t say, ‘YES, you’re dying, oh how horrible’
but we just kind of embrace that—then, it’s much easier for people, you know?
And I think that in itself, to be mindful that somebody is afraid and not to reject it,
not to sugar it over with something but also not to be freaked out. But to really be
with that feeling and to embrace it and to feel from our heart . . . Then, it seems the
person can usually . . . can relax.” (Bruce & Davies, 2005, p. 1339)
Caregivers learned to be with fearful residents and not to turn away from their
fear.
The emphasis was not on perfecting fearlessness but, rather, on practicing to open
to one’s experience continuously and be willing to shift, and be changed in the
process. (Bruce & Davies, 2005, p. 1330)
CHAPTER SUMMARY
The “M” in the COMFORT model—mindful presence—is both an attitude and a non-
verbal behavior that the palliative care nurse brings to patients and their families in
hospice and palliative care. Based on the Buddhist notion of mindfulness, a mindful
attitude is focused on the here and now, is “in the moment,” and is undistracted by
any stimuli other than the immediate. Presence is that quality of being there for the
patient or family member, either physically or psychologically or both, and being non-
judgmental, unscripted, and spontaneous. Thus, a mindful presence means that the
nurse is totally dedicated to the circumstances she finds in the here and now, regardless
of what has gone before or what is predicted to follow. It is a valuing of “being” over
“doing,” in the belief that compassionately bearing witness to a patient’s/family’s suf-
fering may be the greatest gift a caregiver can offer.
This type of healing or compassionate presence involves actively listening to the
patient’s/family member’s emotional state and responding to their situation with
107 Mindful Presence
empathy. It also entails listening to and eliciting the patient’s/family’s stories of the
illness journey. The following chapter deals with family as an integral component of
palliative care.
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Bruce, A., & Davies, B. (2005). Mindfulness in hospice care: Practicing meditation-in-action.
Qualitative Health Research, 15, 1329–1344.
Burns, M. M. (2001). Exercises for empathy. Communication Teacher, Summer, 13.
Childs, D. (2007). Mindfulness and the psychology of presence. Psychology and Psychotherapy:
Theory, Research and Practice, 80, 367–376.
Cichon, E. J. (2001). Practicing active listening. Communication Teacher, Fall, 11–14.
Cohen-Katz, J. (2004). Mindfulness-based stress reduction and family systems medicine: A
natural fit. Family Systems and Health, 22(2), 204–206.
Cupach, W. R., Canary, D. J., & Spitzberg, B. H. (2010). Competence in Interpersonal Conflict
(2nd ed.). Long Grove, IL: Waveland Press, Inc.
Dahlin, C. M. (2010). Communication in palliative care: An essential competency for nurses.
In B. R. Ferrell & N. Coyle (Eds.), Oxford Textbook of Palliative Nursing (3rd ed., pp. 107–
133). New York: Oxford University Press.
Davis, C. (2007). Lifting the spirit. Nursing Standard, 21(48), 22–23.
Day, P. H., & Horton-Deutsch, S. (2004). Using mindfulness-based therapeutic interven-
tions in psychiatric nursing practice—Part I: Description and empirical support for
mindfulness-based interventions. Archives of Psychiatric Nursing, 18(5), 164–169.
Eide, H., Frankel, R., Haaversen, A. C. B., Vaupel, K. A., Graugaard, P. K., & Finset, A. (2004).
Listening for feelings: Identifying and coding empathic and potential empathic opportuni-
ties in medical dialogues. Patient Education and Counseling, 54, 291–297.
Ferrell, B. R., & Coyle, N. (2008). The Nature of Suffering and the Goals of Nursing. New York:
Oxford University Press.
Ferrell, B. R., & Coyle, N. (Eds.). (2010). Oxford Textbook of Palliative Nursing (3rd ed.). New
York: Oxford University Press.
Gardner, D. (1985). Presence. In G. Bulechek & J. McCloskey (Eds.), Nursing Interventions:
Treatments for Nursing Diagnoses (pp. 316–324). Philadelphia: Saunders.
Gilje, F. (1992). Being there: An analysis of the concept of presence. In D. Gault (Ed.), The
Presence of Caring in Nursing (pp. 53–67), New York: National League for Nursing
Goleman, D. (1997). Healing Emotions: Conversations With the DALAI LAMA on Mindfulness,
Emotions, and Health. Boston: Shambhala Publications, Inc.
Hirst, I. S. (2003). Perspectives of mindfulness. Journal of Psychiatric and Mental Health
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Johns, C. (2008). Passing people by (why being a mindful practitioner matters). Journal of
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Kabat-Zinn, J. (1990). Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face
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DISCUSSION QUESTIONS
1. What is the main difference between the Buddhist concept of mindfulness and
the attitude of being mindful?
2. How would you define the concept of mindful presence?
3. How is “being” valued more than “doing” in mindful presence?
4. How can presence be compassionate and healing?
5. What are some of the personal characteristics of the “core attitude” in palliative
care?
6. What are Kabat-Zinn’s seven attitudinal foundations of mindfulness?
7. How can mindful presence involve both a physical and/or a psychological
presence?
8. Why are empathy and compassion considered key characteristics of a healer who
is fully present?
9. How is active (or deep) listening linked to compassionate presence?
10. How does listening differ from hearing? (What are the seven activities that
comprise the listening process?)
11. How is witnessing a part of mindful presence?
12. How and when is silence a valuable tool?
13. How does deep listening and bearing witness help elicit patients’ and family
members’ stories?
14. How is intercultural sensitivity a part of mindful presence?
15. What are the four components of cultural competence in health care contexts?
16. How is Martin Buber’s I-It/I-Thou dialectic an appropriate philosophical
grounding for mindful presence?
educator resources
and materials
Place students into groups of three and have each student take turns playing the role
of the nurse, patient, and family member. In the patient role, the student will possess
information that he or she is reluctant to share. In the nurse role, the student will have
to progress through the six steps of active listening before the patient can reveal the
information. In the family member role, the student will be charged to prevent excuse
making, judgments, or forms of defensive communication on the parts of the patient
and nurse.
Role cards that provide the directions, a scenario, and the six steps of active lis-
tening are distributed to students. Students are told that the patient’s role card and
the family member’s role card contain a goal (the goal is the same on both cards—
for example, the goal could be “nurse must ask three questions and paraphrase two
times”), but the nurse’s role card does not contain the goal. The patient’s card also
contains a “truth,” which is the content that the nurse is trying to get the speaker to
reveal. As such, the nurse must continue to use the six steps of active listening until
the goal has been met. Once the goal has been met (as determined by the direc-
tions for the patient and the family member role cards), the truth can be revealed
to the nurse.
When distributing the role cards, be sure to emphasize that (a) the patient role may
require a little “acting” and (b) the patient may have to stall the nurse until the nurse meets
the goal listed on the role card. It takes approximately 15 minutes for members to com-
plete the activity. To debrief the activity, solicit comments about the scenario and inquire
whether the goal was met. For example, the instructor may ask: (1) how well each step of
active listening was accomplished and (2) if the scenario were conducted again, how active
listening could be improved. Ask students to indicate how the six steps of active listening
could be incorporated into situations they encounter in palliative nursing.
110
111 Mindful Presence
Scenario
You are talking with the nurse in between his/her patient care duties. The nurse says
that you seem uncomfortable. You do not want to talk about your problem. It is still
too upsetting to talk about, so you make up excuses until the nurse reaches the goal.
Goal
NURSE MUST ASK TWO QUESTIONS AND PARAPHRASE TWO TIMES.
When the nurse has reached the goal, you may now reveal the truth: During your
cancer treatment, your significant other has been having an affair.
STOP LOOK LISTEN ASK QUESTIONS PARAPHRASE EMPATHIZE
Nurse
Directions
1. Read the following scenario and be prepared to act it out.
2. The truth of the situation will not be revealed to you until you have practiced the
six steps of active listening as required by this exercise.
Scenario
A patient seems very preoccupied and is possibly upset about something. The patient
has not been as outgoing as he/she has been on previous treatment visits, so ask what
the matter is.
YOU MUST CONTINUE TO PRACTICE ACTIVE LISTENING, USING THE
STEPS BELOW, UNTIL THE PATIENT REVEALS THE TRUTH TO YOU.
STOP LOOK LISTEN ASK QUESTIONS PARAPHRASE EMPATHIZE
112 communication in palliative nursing
FAMILY MEMBER
Directions
Read the scenario below. The NURSE will start by asking the PATIENT whether there
is something wrong or if there is something the patient would like to talk about. The
NURSE should practice active listening until the PATIENT reveals the truth.
Scenario
A nurse and patient are talking. The NURSE asks the PATIENT if there is something
making him/her uncomfortable. The PATIENT is not prepared to talk at first, so the
nurse must practice active listening.
Goal
NURSE MUST ASK TWO QUESTIONS AND PARAPHRASE TWO TIMES. You keep
the pair communicating until the NURSE has met the goal and the PATIENT has
revealed the truth.
DO NOT allow the NURSE to draw conclusions, express judgment, or give advice
unless requested until after the required paraphrasing has been done.
STOP LOOK LISTEN ASK QUESTIONS PARAPHRASE AND EMPATHIZE
Adapted from Elaine J. Cichon, Florida International University, Communication Teacher, Fall,
2001, 11–14.
Adapted from R. Bolton (1979). People Skills. Englewood, NJ: Prentice-Hall. In MacPhee, M. (1995).
The family systems approach and pediatric nursing care. Pediatric Nursing, 21, 5, 417–437.
Working in nurse–patient dyads, the patient expresses a current problem (e.g., the
patient is very concerned with how her oldest daughter is reacting to her poor progno-
sis). The nurse, with body posture that is relaxed but also alert and with good eye con-
tact, encourages conversation about the problem by giving simple responses that let the
patient know she is heard (e.g, “That sounds very difficult for you.” “I’m so sorry you’re
113 Mindful Presence
having this problem.”) The nurse should also use open-ended questions/responses that
can serve as prompts (e.g., “What can I do to help you resolve this?” “Tell me how you
see the problem being resolved.”). The nurse might also use silence to allow time for the
patient to express herself. Paraphrasing should be used to clarify the patient’s concern
and check it for accuracy: for example, “I’m hearing that you’re very concerned about
how your daughter is dealing with your prognosis.” Mirroring back the patient’s feelings
can also be useful: “It seems that you’re feeling sad and anxious about this.”
After the role play, the patient should give the nurse feedback about whether she
felt that the nurse heard her accurately and whether her nonverbal communication
expressed concern and empathy. Then the two should exchange roles and repeat the
exercise.
Adapted from MacPhee, M. (1995). The family systems approach and pediatric nursing care.
Pediatric Nursing, 21(5), 418.
Dyads are given 10 minutes (5 minutes per person) to share their joys and concerns.
Immediately after sharing, the speaker should write down responses to the following
questions:
be a combination of text and illustration. They should remember to feel and think
with the other person in mind.
In addition to turning in cards as an assignment, instructors will have students give
their card to their partner. As students read the original cards created just for them,
they consider how well their partners paraphrased and perceived their feelings.
Note: An additional assignment can include grading their partner’s card or allowing
class time for partners to discuss and share the decision making behind card construc-
tion. This allows for further assessment and understanding of empathic listening skills
and identification of what skills were exhibited or lacking.
Adapted from Burns, M. M. (2001). Exercises for empathy. Communication Teacher, Summer, 13.
REFERENCES
Wolvin, A., & Coakley, C. G. (1996). Listening (5th ed.). Dubuque, IA: Brown & Benchmark.
(Provides summary of exercise created by Mari Miller Burns, Iowa Lakes Community
College, Estherville, IA.)
Adapted from Morgan & Morgan (2005), as cited in Turner, K. (2009). Mindfulness: The present
moment in clinical social work. Clinical Social Work Journal, 37, 95–108.
Adapted from Johns (2008). Passing people by (why being a mindful practitioner matters). Journal
of Holistic Healthcare, 5 (2), 37–42.
Adapted from O’Neal, J. S. (1997). Mindfulness: Treasuring the moments. Creative Nursing, 3 (3), 8–9.
A variation on this exercise is to pretend you are aliens, just arriving on Earth
and discovering this object (the raisin) for the first time. Pay attention to every-
thing you can discover about the object so that you can report on it back home
(Ott, 2002, p. 490).
Mindful Walking
One way to integrate awareness into your daily routine is through mindful walking.
Choose a short walk, such as the hallway outside your office, and begin walking,
paying attention to the entire experience of walking. (You will not be walking in order
to get anywhere but merely to attend to the act of walking itself.) Pay attention to all
the physical details and sensations of walking. Be aware of both the self and the envi-
ronment as you walk.
Adapted from Ott, M. J. (2002). Mindfulness meditation in pediatric clinical practice. Pediatric
Nursing, 28 (5), 490.
116 communication in palliative nursing
Used with permission from: Ott, M. J. (2002). Mindfulness meditation in pediatric clinical prac-
tice. Pediatric Nursing, 28 (5), 489.
117 Mindful Presence
Exercise 7
Table 4.4 Operational Steps in the STEDFAST Self-Aware Mindfulness Development
Model
To develop self-aware mindfulness in the nurse–client relationship, progress through each
step seeking help as needed. An answer of “no” at any step signals the need to mindfully
focus on one’s breath then non-judgmentally accept whatever thoughts and feelings arise
on the way to returning to one’s breath, finally emerging ready to practice self-aware
mindfulness in the nurse–client relationship.
Self-Assess
• In this present moment, what is happening with me, can I first truly and non-
judgmentally accept where I am right now and take on the therapeutic role? If no,
mindfully breathe . . . accept . . . breathe . . . When ready (continue)
Therapeutic Role
• Am I springing fully alive into the nursing role, bringing competence and caring in the
relationship? If no, mindfully breathe . . . When ready
Empathy
• As I interact, can I sense or imagine what it must feel like to live through what the
client has experienced? If no, mindfully breathe . . . When ready
• Am I able to non-judgmentally accept where the client is at this present moment? If no,
mindfully breathe . . . When ready
Detached Reflection
• Can I practice self-control to move part of myself away from the immediate client
stimuli to think about my actions/reactions? If no, mindfully breathe . . . When ready
• Can I accept and deal with overly intense or disproportionate feelings enough to not
spill beyond the boundaries of the nursing role? If no, mindfully breathe . . . When ready
• Am I using critical thinking and theory to help me monitor, analyze, and reevaluate the
original experience? If no, mindfully breathe . . . When ready
Facilitated Debriefing
• Can I/have I access/accessed person(s) who can help me process feelings, thoughts, or
actions? If no, mindfully breathe . . . When ready
• Can I accept my vulnerabilities signaled by changes in my behavior (ignoring or
overreacting) and/or my disproportionate feelings (e.g., overly liking or even disliking
the client)? If no, mindfully breathe . . . When ready
• Can I appropriately self-disclose at a level at which I feel safe? If no, mindfully
breathe . . . When ready
• Can I use theory and feedback to help me identify blind spots, receive support,
clinically problem solve, and reengage? If no, mindfully breathe . . . When ready
Alert Empathy
• Can I be alertly attentive and caringly connect with empathy yet also stay mindful
about countertransference, my self-boundary, and needs as separate from the client’s
boundary and needs? If no, mindfully breathe . . . When ready
118 communication in palliative nursing
Used with permission from: Scheick, D. (2011). Developing self-aware mindfulness to manage coun-
tertransference in the nurse-client relationship: An evaluation and developmental study. Journal of
Professional Nursing, 27(2), 114–123.
5
family
119
120 communication in palliative nursing
becomes very upset at Alice’s request and suggests that if she had visited more
often, perhaps she wouldn’t feel the need to prolong their mother’s life.
The scene unfolding in the family conference concerning Harriet’s care is all too com-
mon and represents a typical experience for a palliative nurse. Sometimes it’s not the
patient who requires the nurse’s attention—it’s the family! Families need help under-
standing a poor prognosis, interpreting physical and cognitive changes in the patient,
and making decisions about treatment and care choices when there are no desirable
options. Anger and frustration often result from family tensions, feelings about the
disease, or fear and can be directed toward the nurse. Conflicts arise among family
members, with family and staff, and between family and patient.
Unlike other clinicians who have structured interactions with families, the palliative
care nurse has an intimate role with family members. Bedside care avails opportunities
for the nurse to be “like family” for the patient and their loved ones. Attention to family
advocacy (task communication) as well as the family’s story (relational communica-
tion) facilitates the nurse’s acceptability into the family unit. This chapter depicts the
family as a system with predictable family communication patterns that can inform
appropriate communication strategies to prevent as well as resolve conflicts concern-
ing family. Although medical decision making is often left in the hands of individu-
als biologically or legally related to the patient, we also consider family members to
include those with close, intimate relationships described as familial.
This chapter presents three tenets of family communication in palliative nursing.
Family systems perspective will illustrate the importance of family members in the
patient’s clinical story, thus revealing their status as second-order patients. The next
section will describe family communication patterns and present identifiable family
caregiver types. By adjusting communication to a family’s established communication
pattern, nurses can collaborate with the family, which serves as a conduit to the patient.
The final section of this chapter will focus on family meetings and how they can be
tailored to meet the family members’ needs. As the intricate layers of family commu-
nication are described in this chapter, we hope it will reveal the sensitive needs of the
family and warrant the attention of palliative nurses.
the backstage happenings of the medical system and other clinicians. Boxes 5.1 and 5.2
provide the perspective of family caregivers.
Box 5.1
“We would like to be asked if we want to be involved and how much we want to partic-
ipate in her care. I know my Mom. It is very clear that the nurse and health care team
believe they are responsible for the medical care, but as far as the emotional part, that is
us. I had been her caregiver for three years, I felt like I needed to get in there and help and
I couldn’t. It is feeling that you are connected directly to what is happening and when
they don’t include you, you feel even more vulnerable.” (Eggenberger & Nelms, 2007)
Box 5.2
“We had a great nurse . . . He was willing to answer all our questions. If you asked him
anything he was there . . . just being personable. Telling us straight up what’s going on is
definitely helpful, but it is nice when they can bring it down to a level where we feel like
they are explaining it to us. Having nurses and doctors be honest with us and keeping us
informed helped us cope. No matter how bad it is, you would much rather hear the hon-
est truth . . . But somehow still maintaining some hope. They show us they care about
us.” (Eggenberger & Nelms, 2007)
Taking care of the family and providing family-centered care involves addressing
family burden, advocating for the family, educating about disease and illness, provid-
ing emotional support, valuing family input, and enabling flexibility and easy access
to the patient (Nelson et al., 2010). These efforts also involve helping the family work
through their feelings and say good-bye (Kaasalainen, Brazil, Ploeg, & Martin, 2007).
Not surprisingly, nurses are a central figure in the family’s memories of the death—
adequacy on the job, attitude, and empathy are remembered most, more than direct
care, hospice, or patient preferences (Munn & Zimmerman, 2006). Good death expe-
riences are derived from a singular nurse who is perceived to be in charge of care,
actively providing accurate information and emotional support as needed (Rhodes
et al., 2008).
Variations in family background and beliefs shape the nature and magnitude of
family issues that can develop during hospice and palliative care. Family functioning
and family beliefs and acceptability about prognosis vary. Families range from well
functioning, characterized by a supportive environment and good conflict resolu-
tion skills, to dysfunctional families wherein family members have suppressed anger
and hostility toward each other (Bartell & Kissane, 2005). Additionally, families have
122 communication in palliative nursing
a general belief about how end-of-life decision making is done within their family
(Leichtentritt & Rettig, 2002) (Table 5.1).
These beliefs are grounded in family norms and the history of decision-making
style within the family, how the family has previously negotiated disagreements, and
their perceived obligation to the family as it pertains to care. Collectively, the patient
and family have a shared past that sustains a communication dynamic best described
as a family system—a system that warrants family as “second-order” patients.
With no beginning or end, family systems are constantly interacting with their envi-
ronments, the people and information accessible to them, and respond by adapting
to stress and change or through resistance. The family system has boundaries, which
serve to protect family members. Boundaries define the system and communication
between the system and other systems (Mehta, Cohen, & Chan, 2009). Boundaries can
be permeated to allow information to come in and go out (Mehta et al., 2009). Nurses
can gain insight on the permeability of family boundaries by paying attention to family
member reactions to illness and communication between family members (including
the patient).
Clinicians trigger boundaries within the family system by introducing new “plots”
in the stories of patients and families (Sharf, Harter, Yamasaki, & Haidet, 2011). For
example, families facing a crisis such as serious, chronic, or terminal illness make every
effort to return the family to “normal” or pre-illness/diagnosis. Hospice and pallia-
tive care brings an imbalance to the family system and suggests an outcome that will
ultimately result in a shift in the family system. Family roles and responsibilities are
misplaced when a loved one is ill, and patients are often more concerned about the suf-
fering of their family members than their own suffering (Sherman, 1998). By learning
about family roles, nurses can shape their communication to protect or validate family
member identity (Leon & Knapp, 2008).
Consistent exposure and interaction with the family also allows the nurse to
recognize predictable interactions. Predictable interactions are repetitive interac-
tions among family members within the system that depict informal guidelines
which shape hierarchical roles and appropriate family communication. Patient
care permits the nurse to enter the family system and learn the rules of the family
(Elliott & Herndon, 1981) (Table 5.2).
Armed with this knowledge, the nurse can adapt his or her own communication
and use family background to simultaneously provide task and relational communica-
tion in order to meet care goals. This involves understanding how illness has impacted
family functioning and relationships, each member’s emotional reaction and intensity,
and variations in family-level involvement in care (Leon & Knapp, 2008).
Recognition of the family’s predictable interactions tells us if the family is an open
or closed system. In an open system, information is allowed in and out of the system.
Family members disclose private information about the family and permit nurses to
Used with permission from: Leon, A. M., & Knapp, S. (2008). Involving family systems in critical
care nursing: Challenges and opportunities. Dimensions of Critical Care Nursing, 27(6), 255–262.
Doi: 10.1097/01.DCC.0000338866.47164.6d
124 communication in palliative nursing
learn about vertical stressors that emerge from long-established family patterns and
relationship history between family members (Leon & Knapp, 2008). On the other
hand, in a closed system family members do not share background information or
insight into family relationships. In these instances, nurses often face the challenge of
working with families that haven’t accepted or don’t believe the terminal prognosis
(Back & Arnold, 2005). Conflict is likely to occur as family members insist on aggres-
sive care, even when nurses, physicians, and other clinical staff feel it is inappropriate
(Fine, 2010; Luce, 2010). The nurse is left to provide patient care that may seem contra-
dictory to the family or that the family may not approve of (Fine, 2010).
Working with patients requires attending to the communicative needs of the family.
The goal is to match family needs with resources and empower them through educa-
tion and support (MacPhee, 1995). Collaborating with the family requires ongoing,
structured communication that is aligned with preexisting family communication pat-
terns and is sensitive to the family structure (Leon & Knapp, 2008). The family is a con-
duit to the patient, and family competency is important to the overall care experience
(MacPhee, 1995).
the nurse direction on how to communicate with the family. Consensual families
value parental decision making and explaining decisions to the children, and allow
for the children to provide input. Pluralistic families have open discussions that
involve all family members and value participatory decision making. Both of these
family communication patterns illustrate open family systems that allow information
to come into the family and be discussed. On the other hand, protective families and
laissez-faire families represent closed family systems and rely on nursing interven-
tion to facilitate family communication. Protective families rely heavily on obedience
to parental authority, and family members engage in very little communication with
each other. Similarly, laissez-faire families have little family interaction, and members
are emotionally detached from each other. By distinguishing the patient and family’s
communication pattern, there is potential for family conflict to be identified. Nurses
can then adapt their communication accordingly so that problem solving and solu-
tions meet the family structure. One approach to working with families is to conduct
a family meeting (also known as a family conference) to ensure that family members
are involved in the patient’s plan of care.
FAMILY MEETINGS
Family meetings facilitate decision making about the patient’s care and include dis-
cussions about disease status, withdrawing or withholding artificial feeding, dis-
charge options, and symptom distress (Hudson, Thomas, Quinn, & Aranda, 2009;
Yennurajalingam et al., 2008). Pain and spiritual issues are more likely to be discussed
and documented when a palliative care nurse or physician is present for the family
meeting (Machare Delgado et al., 2009). Often a family meeting is prompted by the
family’s lack of understanding or information about the medical condition of the
patient or following a critical incident (Radwany et al., 2009). Commonly, family
meetings occur due to conflict between the patient and family and health care team
(Yennurajalingam et al., 2008).
While the goal of these meetings is to enable collaboration between care staff
and family members, they also benefit family decision making (Wittenberg-Lyles,
Goldsmith, Ragan, & Sanchez-Reilly, 2010). First, communication in family meet-
ings is meant to relieve the uncertainty that family members have about chronic care,
dying, and death. Nurses educate families by translating medical knowledge (Dawson,
2008) (see Chapter 3 on health literacy). Second, nurses are there to support families
and reassure them that they are making good decisions. Finally, family meetings are a
place for nurses to help mediate family conflict.
Just as each family has its own unique communication pattern and style, each fam-
ily member in a family meeting has varying needs in terms of literacy level, support,
and family arbitration. The four family communication patterns mentioned previ-
ously inform a typology of family members that can be used to predict dominant areas
of focus within the family meeting (Wittenberg-Lyles, Goldsmith, Demiris, Parker
Oliver, & Stone, 2012). The Manager Family Member enjoys a privileged position in
126 communication in palliative nursing
the family and is understood to be the head of the household. He or she is at the top
of the family hierarchy. This family member is the self-appointed family spokesperson,
limiting other family members in the decision-making process. Ultimately, this indi-
vidual is positioned to make the majority of care-planning choices in accord with the
patient. Palliative nurses must work to include other family members and make them
feel part of the care process.
Providing support and reassurance becomes the nursing focus for family meet-
ings with the Carrier Family Member. This individual surrenders to family authority,
absorbing the greatest burden and sacrifices for patient care. Communication with
other family members is limited and often the result of a long-established trend of hos-
tility within the family. Acceptance of the patient’s illness and treatment choices can
be confounding because of limited talk, but the pressure to conform to the patient’s
wishes is given priority over his or her own needs. Caregivers welcome the opportunity
to self-disclose to staff, as the family environment prohibits it. Information seeking
and suppression are a common coping mechanism. Nursing intervention is immedi-
ately needed for the Carrier Family Member as this family member is dependent upon
staff to facilitate patient requests.
Family meetings with the Partner Family Member emphasize education about the
disease, placement options, and additional information that contributes to making an
educated decision that meets the patient’s need congrugent with family expectations
for care. Typically this family member benefits from the patient’s advance care pla-
nning and family-initiated internal meetings to facilitate decision making and support.
As a result, nursing staff are there to provide further education and to support open
family discussions and the sharing of care stress. Finally, the Loner Family Member
is in greatest need of nursing intervention. This family member has little support for
decision making and care provision. Limited communication and weak relationships
with other family members results in high stress, burden, limited social support net-
works, and anger and resentment.
Assessment
Understanding the family’s system and the family role of the primary caregiver deter-
mines the overall communication approach of the nurse. Harriet’s family from the
opening case study reveals a closed family system as family members have low inter-
dependence. The three children (Bob, Jane, and Alice) are not close, and while Alice
127 Family
Used with permission from: Titelman, P. (Ed.). (1998). Clinical Application of Bowen Family Systems
Theory. Binghamton, NY: Haworth Press, p. 55.
visits her mother monthly, she doesn’t appear to be communicating with Bob. Thus,
the three children have little influence on one another. As a result, the nurse cannot
expect that any information given to one family member will be shared with another.
However, families who enjoy an open family system are different, and information
shared with one family member is likely relayed within the family.
To gain an understanding of the family system, use the outline of the “Survey
of Family Fields” (Table 5.3). Begin by first identifying individuals who are in the
nuclear family, and their gender, age, name, occupation, and educational back-
ground. Once this background information is obtained, invite the patient and
individual family members to discuss the onset of the symptoms. This should be
done with all members of the family collectively, as questions target major events
within the family.
Delving deeper into the family history and individual relationships between family
members (especially relationships with the patient) can provide direction on commu-
nication gaps within the family. Family communication gaps reveal points of tension
for the family and indicate where conflict may occur. These gaps can include strained
relationships that prohibit family members from speaking or show how families han-
dle conflict, crisis, and stressful events. The following can be used to assess for family
background (Box 5.3):
128 communication in palliative nursing
Box 5.3 Questions to be Posed by the Hospice Team to Derive a Care Plan
Horizontal Stressors
The family life cycle (to be considered by the hospice team member)
1. In what stage of life is the family, and what are the related tasks?
2. How might the terminal illness and death interfere with the accomplishment of
these tasks?
3. Will the death be out of the usual order of the life cycle events?
Vertical Stressors
1. Could you give an example of a difficulty your family has faced when you were
growing up?
2. What helped your family get through this?
3. What was tried that did not help?
1. What values did you learn growing up that are still important to you now?
2. What values did you learn growing up that don’t work as well for you now?
Unresolved relationships
Used with permission from: Knapp, E. R., & DelCampo, R. L. (1995). Developing family care
plans: A systems perspective for helping hospice families. American Journal of Hospice and
Palliative Medicine, 12, 39–47.
129 Family
9 Coupling—Are there any family members who are newly single or new couples?
9 Expansion—Has the family recently increased in size due to addition of children or
in-laws?
9 Contraction—Has the family recently decreased in size due to adult children leaving,
family members moving away, or death?
Open Communication
Supportive statements
Blocked (direct communication)
Hang up phone
Refuse to answer
Agree not to talk about illness
Blocked (indirect communication)
Not responsive
Appear uncomfortable
Self-censored speech
Pro-active
Fear of causing anxiety
Reactive
Sensing someone does not want to talk and pulling back
Use of third parties
Intermediaries
Sounding boards
Used with permission from: Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). We are talking,
but are they listening? Communication patterns in families with a history of breast/ovarian
cancer (HBOC). Psycho-Oncology, 13, 335–345.
130 communication in palliative nursing
Plan
Knowledge about the family system can provide background and context for learning
about the communication preferences of individual family members. For example, we
see two very different types of family members from within Harriet’s family. Bob has
served as the designated proxy and family spokesperson and has had regular and rou-
tine communication with health care staff throughout Harriet’s care. Comparatively,
Alice and Jane have not played such an active role; however, Alice has maintained rou-
tine visits with her mother on a monthly basis. Given the low interdependence of these
family members (even Bob is reluctant to call Jane when Harriet’s condition changes),
the nurse needs to treat these family members separately rather than as one unit that
can be approached in the same way. After the family system has been assessed, the
below chart can be used to determine specific family member types and identify family
communication patterns (Table 5.5).
There is often a range of perspectives within one family, and conflict can arise
between family members who think they know the patient best or because they are
uncertain about patient preferences (Back & Arnold, 2005). For the nursing staff tak-
ing care of Harriet, differences among family member knowledge, communication
with each other, and family role resulted in an intense family meeting caused by a lack
of understanding of hospice (which led to Bob’s request to transfer Harriet to the hos-
pital), and filled with family conflict (between Bob and Alice) and denial (for Alice).
Table 5.6 Themes Often Discussed in Family Meetings in the Palliative Care Setting
___ The nature of the illness and its symptoms.
___ Prognosis and future predictions about the course of the illness.
___ Caregiving roles about symptom management, medications, nursing care.
___ Liaison with medical team.
___ The emotional demands of the role.
___ Importance of self-care and respite from caregiving.
___ What to expect as death approaches.
___ How to talk with the patient about death and dying.
___ The process of saying good-bye.
___ How to manage a death in the home.
___ The positive aspects of the caregiver’s role.
___ Teamwork and sharing the role of caregiver.
___ When to seek help and how.
___ Support from volunteers and other community resources.
Used with permission by Oxford University Press: Coyle, N., & Kissane, D. W. (2010). Conducting
a family meeting. In D. W. Kissane, B. D. Bultz, P. M. Butow, and I. G. Finaly (Eds.), Handbook of
Communication in Oncology and Palliative Care. New York: Oxford University Press, p. 168.
It is only when a change in Harriet’s condition occurred that the family was brought
together by a family meeting intervention. To plan for the family meeting, begin to pri-
oritize communication and support needs using the information in Table 5.6.
First, checkmark appropriate information needs for the family. Then rank-order the
checked topics to plan for what topics should be discussed first, second, third, and so
on. Keep in mind that nurses serve important functions in the context of family meet-
ings. The role of the nurse in the family meeting is summarized in Table 5.7.
Intervene
Hosting a family meeting involves providing information and creating a comforta-
ble environment to allow family members the opportunity to share their feelings and
Adapted from: Nelson, J. E., Cortez, T. B., Curtis, J. R., Lustbader, D. R., Mosenthal, A. C., Mulkerin,
C., et al. (2011). Integrating palliative care in the ICU: The nurse in a leading role. Journal of Hospice
& Palliative Nursing, 13 (2), 89–94.
132 communication in palliative nursing
thoughts (Hudson et al., 2009). There is no set standard for family meeting commu-
nication, and nursing intervention can either come from being a discussion leader
or a contributing team member during the meeting (Hudson, Quinn, O’Hanlon, &
Aranda, 2008). Regardless of role, the nurse should work to make sure the family meet-
ing happens early in the patient’s care (Hudson et al., 2008).
A typical conference format includes a premeeting to set goals (see planning phase
above) and identify roles, followed by an initial inquiry to obtain the family’s under-
standing and discuss relevant case issues (Machare Delgado et al., 2009). Table 5.8
provides a helpful tool when communicating with family members. Another way to
engage family members is to ask questions. Table 5.9 shows how questions can be
asked in different ways to elicit the response needed. For example, the opening case
study does not indicate whether or not Harriet has advance care planning in place. To
help her family think about her wishes and recall any advance care planning conversa-
tions, use these questions in Box 5.5.
• Did [patient’s name] ever tell you what he or she wanted for him/herself?
• Did [patient’s name] ever talk about care of another family member and state whether
they would have wanted the same type of treatment?
Used with permission from: Dahlin, C. (2010). Communication in palliative care: An essen-
tial competency in nurses. In B. Ferrell and N. Coyle (Eds.), Oxford Textbook of Palliative
Nursing (pp. 107–133, Table 5–5). New York: Oxford University Press.
Evaluate
While communication in family meetings is important—and family meetings can
result in enhanced family learning and decision making—the nurse can extend care
offered to families that goes beyond one or two family gatherings with the health
care team. Nurses are easily available to families compared with other clinical team
members and thus gain more knowledge about the family’s coping process and early
bereavement stages. Addressing family coping as part of the evaluation process can
lead to increased or decreased nursing intervention and enable early bereavement care
(Wittenberg-Lyles & Sanchez-Reilly, 2008). Move beyond documenting communica-
tion within the family meeting and evaluate the family’s coping by asking key questions
as suggested in Box 5.6. Early bereavement care can also begin by evaluating spiritual
or religious needs of family members. Box 5.7 can be used as suggested prompts for a
discussion about spiritual needs. Box 5.8 provides common responses of children to
serious illness in the family.
133 Family
Personal Introduction. “I’m [name] . . . it is good to meet you. I am [patient]’s nurse; I’m
glad you are here.”
Identify others “Are there other family members or people close to you that you
important but not want to be included, either at the next visit or by phone call?”
present.
Elicit concerns and “Do you have particular questions or concerns that you would like
expectations. us to discuss today?”
“Some things that the family members of the other patients have
expressed as concerns include . . . Are these on your mind too?”
Check for accuracy. “Am I correct that your question/concern about your wife’s
condition is . . . ?”
Check for agreement. “It seems that we agree that treatment X [or hospice] looks like it
might be a good choice for us to consider . . . Do you think so too?”
Validate convergence. “It is helpful that together we understand and agree about the best
treatment [care or placement] choices . . . let’s talk now about what
to do and how to get started.”
Reassure. “It is good that you are here so we can talk openly about these
things.”
“You have every reason to feel reassured that you are doing
everything possible to help your husband.”
“It is okay if you and (the patient) want more time to think about
your options. I’ll continue to care for him/her and be here for you
no matter what you decide.”
Control conversational “I understand how you feel about this; now I’d like to hear it in his/
dominance. her words.”
Acknowledge family “It may be hard to understand the test results given that he doesn’t
member/companion’s seem to feel sick or have any symptoms.”
response.
Addressing “These treatments don’t always work the way we hope and expect
anger at medical they will. We are all understandably upset when this happens.”
recommendation.
Used with permission by Oxford University Press: Albrecht, T. L., Eggly, S. S., & Ruckdeschel,
J. C. (2010). Communicating with relatives/companions about cancer care. In D. W. Kissane, B. D.
Bultz, P. M. Butow, and I. G. Finaly (Eds.), Handbook of Communication in Oncology and Palliative
Care (pp. 157–164). New York: Oxford University Press. [Table 14.1]
134 communication in palliative nursing
Used with permission by Oxford University Press: Coyle, N., & Kissane, D. W. (2010). Conducting
a family meeting. In D. W. Kissane, B. D. Bultz, P. M. Butow, and I. G. Finaly (Eds.), Handbook of
Communication in Oncology and Palliative Care (pp. 165–175). New York: Oxford University Press.
[Box 15.2]
Used with permission from: MacPhee, M. (1995). The family systems approach and pediatric nurs-
ing care. Pediatric Nursing, 21(5), 417–423, 437. Table 2. Reprinted from Pediatric Nursing, 1995,
Volume 21, Number 5, pp. 417–423, 437. Reprinted with permission of the publisher.
135 Family
• Have you/your family been through something like this before? How did you/your
family react/cope?
• Do you have a belief in a higher power that supports you?
• Is there anyone you’d like us to call?
• Can you anticipate any potential areas of concern for you and your family?
• Who could you call if you started to feel really sad?
• Did the patient ever tell you what they wanted for themselves?
• Is there anyone you think the patient would like to see?
• Who is supporting you now?
• Who can you call when things get more difficult?
Used with permission from: Dahlin, C. (2010). Communication in palliative care: An essen-
tial competency in nurses. In B. Ferrell and N. Coyle (Eds.), Oxford Textbook of Palliative
Nursing. New York: Oxford University Press, p. 118.
• Does your particular tradition offer you helpful religious or spiritual counsel in this
situation?
• Is there a particular person you turn to for spiritual help?
• Do you draw strength from any particular object or symbol, e.g., art, music, poetry,
religious icons?
• Do you have a particular place where you find solace?
• Are there particular people or activities that lift your spirits?
• Do you feel your own spiritual or religious practices are being neglected and, if so, how
may we assist you?
Used with permission by Oxford University Press: Hudson, R. (2009). Responding to family
caregivers’ spiritual needs. In P. Hudson and S. Payne (Eds.), Family Caregivers in Palliative
Care: A Guide for Health and Social Care Professionals (p. 45). New York: Oxford University
Press.
• Magical Thinking that results in feelings of guilt (e.g., “I once told Mommy I wished
she were dead”)
• Fears of abandonment, especially in younger children
• Fears of contracting the disease
(continued)
136 communication in palliative nursing
Used with permission from: Glass, E., Cluxton, D., & Rancour, P. (2010). Principles of patient
and family assessment. In B. Ferrell and N. Coyle (Eds.), Oxford Textbook of Palliative Nursing.
New York: Oxford University Press, pp. 87–106: Table 4–6.
CHAPTER SUMMARY
Families of hospice and palliative care patients need nursing care. They need some-
one to help them navigate the medical system, gain access to clinical staff and test
results, and interpret unfamiliar medical terms. They turn to the nurse to meet these
communication needs. Recognizing that the patient and family are impacted when a
family member is seriously, chronically, or terminally ill can foster partnerships and
bring supportive communication to the family’s care experience. Inquiring about the
family’s history and background and the primary caregiver’s family role, and actively
seeking the coping needs of families are qualities of family-centered nursing care.
Seeing patient and family as one can be a challenge in some settings; the next chapter
provides instruction on how to manage various work settings and strive for quality
improvement.
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141 Family
DISCUSSION QUESTIONS
1. What are the characteristics of a family system?
2. Why are family members considered “second-order” patients?
3. How do nurses come to understand family system boundaries?
4. What is a family-centered approach?
5. What challenges arise from closed family systems?
6. How is the nurse’s role different between open and closed family systems?
7. In what ways are family communication patterns shaped?
8. How would you prepare for a family meeting with a Carrier Family Member?
9. From your (and your significant other’s, if applicable) family background, what
major events stand out as most influential in developing the family system? What
family life cycles are currently present in your own family? What vertical stressors
are present?
10. What family member type do you identify with? Explain.
11. What communication strategies would you use to engage Harriet’s daughter
Alice (from the chapter’s opening case study)? Write out what you would say to
her. What questions, if any, would you ask her?
12. What topics would you prioritize for a family meeting with Harriet’s children?
How would you rank-order the topics?
teaching resources and materials
who is always going to tell me he’s got something to pull out of his hat for me. I am
realistic and I know that the hat is getting a little bit shallow, but the communication
is there and I am part of a team, and that’s very important. Patients really want to feel
that they’re part of a team.
I didn’t have my cancer in isolation. I was married, was raising children, and I had
two parents who were very distressed about my cancer. They were from an older gen-
eration where they couldn’t talk about cancer. I took it upon myself to educate them.
I remember one time we sat down in my living room and I said, “Okay now, on the
count of five we are all going to say the word ‘cancer’.” They literally could not say it.
They lived far away and tended to only see me during times when I was ill. Never when
I was well. There were a lot of times when I was ill. And when I was ill, I was really ill.
What they apparently were learning from my experience was not that you can survive
cancer, but that it could be really horrible.
My father was 86 years old, a very healthy man, very robust, very active, didn’t look
a day over 70, never had a health problem, and was uncomfortable in a hospital setting.
He was just scared for me, and would say, “I will never suffer like that. I think what
you’re going through is just torture,” and at times, it really was. Some of those times
were really horrible and there was no hiding it from him. He would say, “This isn’t fair,
people shouldn’t suffer. Somehow you have the strength to do it, but I could never do
that. If I had to suffer at the end of my life, I would be active.”
My parents were becoming more frail and my mother suffered from depression. My
father then had some rectal bleeding. He dismissed it for ages but finally he went to
the doctor. The doctor sent him for a barium enema that showed an irregularity in his
colon and suggested that he probably should have a colonoscopy. I said, “Irregularity
is not a word that a radiologist uses. What does that mean? Call him back and ask
for a copy of the report.” He said, “Oh, the doctor doesn’t sound alarmed. It doesn’t
sound like anything major. I am feeling fine. Just let me be. The colonoscopy is just a
precaution.” Meanwhile he had no contact with his doctor. All the contact he has with
his internist was one telephone call to be told he had an irregularity. So I was thinking,
maybe it’s a polyp.
He finally went for the colonoscopy, and the gastroenterologist took one look at the
barium enema and said to him, “I don’t know why you are here. You clearly have a
blockage. You should have gone to a surgeon 3 weeks ago.” My father was understand-
ably startled by that. That was the first time he had heard “blockage.” He said, “You go
home.” It was Friday afternoon. “I will call your internist, and tell him you really need to
be admitted because you need surgery.” My father went home, called me immediately,
related the story, and said, “Are they trying to tell me I have cancer?” This was the first
time he had brought it up. I said, “Dad, let me get off the phone,” and I had my husband
call the gastroenterologist. So my husband called the gastroenterologist who said, “Your
father-in-law certainly has colon cancer. He should have seen a surgeon weeks ago. He
is almost completely obstructed. He really needs to have surgery tomorrow.” I called
my father back. He said, “Well, what did the doctor say?” I said, “Well, the doctor said
you really need to go to the hospital and talk to a surgeon.” He asked, “Is it cancer? Am
144 communication in palliative nursing
I going to need a colostomy?” I said, “Dad, first of all, it’s not that low down. Number
two, we don’t know if it’s cancer, but it’s an obstruction, and an obstruction has to
be removed. You can’t just live like that.” He said, “I can’t do it. I don’t want to do it.”
I could hear the distress in his voice. Evidently he got off the phone, didn’t say a word to
my mother, walked right by her, walked into another room where he had a gun, which
nobody knew about, walked out of the house, and shot himself in the head.
His suicide has changed everybody’s life. It’s the most extraordinary experience.
I had 16 years of cancer and my father couldn’t deal with the possibility of it for an
hour. I was upset that he couldn’t turn to me and have me or his doctor say, “Let’s talk
about this. Ask me questions.” My mother was also completely in the dark. My father
hadn’t verbalized any of his concern to her. But, 2 days before he committed suicide, he
said to my mother, “Well, I am having the colonoscopy on Friday and then I will know
if I have cancer or not.” What he was saying to her was, “I will know if I am going to kill
myself or not,” because that same day he went to the bank, took out $5,000 and sent me
a check for $5,000 that arrived in my mailbox the day after he killed himself with a little
note that said, “Darling, here’s a gift and mum’s the word. Love, Dad.”
After we buried my father, I made an appointment to see the internist, and I said,
“Why didn’t you pick up the phone and call me? You knew how concerned I was.” And
he said, “Because your father never told me to call you.” I said, “But my father didn’t
know what he had. You didn’t even give him the opportunity.” I asked the internist,
“How many times a month do you have a patient who has just been diagnosed with
cancer?” He said, “Maybe once or twice a month.” I was furious. “Did you ever think of
how serious it is telling somebody that they have cancer? How much thought have you
given it?” He said, “Maybe I never gave it a thought.”
I am here today, because if only one person hears this story and understands just
how traumatic giving a cancer diagnosis is, it will be worth it.
DISCUSSION QUESTIONS
1. Does the author describe an open or closed family system? Did she and her
parents have high or low interdependence?
2. What evidence is there of system boundaries for this family?
3. What family communication pattern is characterized?
4. What family member type does this author represent?
Used with permission from: Dias, L., Chabner, B. A., Lynch, Jr., T. J., & Penson, R. T.
(2003). Breaking bad news: A patient’s perspective. The Oncologist, 8, 587–596.
Framer, J. R. (1985). Family Interfaces: Transgenerational Patterns. New York: Brunner Mazel.
Galvin, K. M., & Brommel, B. J. (2000). Family Communication: Cohesion and Change (5th
ed.). Boston: Allyn & Bacon.
Hoopes, M. (1987). Multigenerational systems: Basic assumptions. American Journal of Family
Therapy, 15, 195–205.
McGoldrick, M., Gerson, R., & Shellenberger, S. (1999). Genograms: Assessment and Intervention
(2nd ed.). New York: Norton.
EXERCISE #1
See what kind of caregiver you are most likely to be!
Make copies of the following scale and administer to your students.
Use the scale below to answer the following questions about your family:
___1. In our family we often talk about topics like politics and religion where some person
disagrees with another.
___2. My parents often say something like “Every member of the family should have some
say in family decisions.”
___3. My parents often ask my opinion when the family is talking about something.
___4. My parents encourage me to challenge their ideas and beliefs.
___5. My parents often say something like “You should always look at both sides of an
issue.”
___6. I usually tell my parents when I am thinking about things.
___7. I can tell my parents almost anything.
___8. In our family we often talk about our feelings and emotions.
___9. My parents and I often have long, relaxed conversations about nothing in particular.
___10. I really enjoy talking with my parents, even when we disagree.
___11. My parents like to hear my opinions, even when they don’t agree with me.
___12. My parents encourage me to express my feelings.
___13. My parents tend to be very open about their emotions.
___14. We often talk as a family about things we have done during the day.
___15. In our family we often talk about our plans and hopes for the future.
___TOTAL SCORE
___16. My parents often say something like “You’ll know better when you grow up.”
___17. My parents often say something like “My ideas are right and you should not ques-
tion them.”
146 communication in palliative nursing
___18. My parents often say something like “A child should not argue with adults.”
___19. My parents often said something like “There are some things that just shouldn’t be
talked about.”
___20. My parents often said something like “You should give in on arguments rather than
risk making people mad.”
___21. When anything really important is involved, my parents expect me to obey without
question.
___22. In our home, my parents usually had the last word.
___23. My parents feel that it is important to be the boss.
___24. My parents sometimes become irritated with my views if they are different from
theirs.
___25. If my parents don’t approve of it, they don’t want to know about it.
___26. When I am at home, I am expected to obey my parents’ rules.
___TOTAL SCORE
Scoring Instructions
Have students add up their score for items #1–15 (conversation) and #16–26 (con-
formity). The range of scores for conversation is 15–75, with a score in between 15
and 45 as low conversation and 46–75 as high conversation. Similarly, the range of
scores for conformity is 10–50, with a score in between 10 and 30 as low conformity
and 31–50 as high conformity. After students have identified their high and low qual-
ity, they should use the family caregiver typology to determine their likelihood for a
caregiver type.
EXERCISE #2
Use the following quotes from family members about their hospice and palliative care
experiences to identify the family member type and/or family communication pattern.
Additionally, describe what you would prioritize for a family meeting with this family/
family member.
1. “I think it’s hard for my sister. She is visiting from Florida and it’s harder for her
because she is the oldest in the family and there is a lot of pressure on her. I think
she feels like she has to take care of everything and keep an eye on everyone and
everything.” (Eggenberger & Nelms, 2007)
147 Family
2. A family of seven members, including a father, five children, and one grandchild,
who had gathered from several states to be together at the bedside of their mother,
said: “We are all here together and we are all doing this together. Our family has
managed by everybody pitching in and being here . . . being together is helping our
family. It’s just more comforting to know that you’ve got somebody . . . It’s been
nice to know that I won’t be the only one here, doing everything.” (Eggenberger &
Nelms, 2007)
3. Martin, primary caregiver for his mother who had Alzheimer’s disease:
I didn’t have a social support system. I think I had more support from friends and
strangers than I did from family. Family just like totally abandoned us and like she
(points to neighbor) would come over and baby-sit for me sometimes and then
the lady across the street would baby-sit for me sometimes, but I never once had
a sister-in-law or somebody ask “Can I come over and baby-sit your mama and
you go to the movie?” or something like that. There was never once that anybody
ever offered me any kind of relief.
I had my brother and his wife . . . I let them stay with me for almost two
years, and neither [of them] would just come into the room when I was chang-
ing her and ask “Can I help you turn her?” or something like that. Sometimes
when I was just so tired and exhausted I would call my nephew and say, “Could
you go ask your daddy if he can help me slide grandmother up a little bit.
I want to turn her,” and then he’d come in and assist. But it was never once
where somebody just came in and volunteered and said “Can I help you do
this?” or “Why don’t you let me watch her tonight and you go do this and you
go do that with your friends?” It wasn’t that. . . . I didn’t get mad about it. . . .
I just said [to myself] you know you just do what God would have you to do and
that’s honor your mother and that’s what I did. And I just honored her to the
fullest by taking care of her.
EXERCISE #1
A 94-year-old woman has three adult children, a son and two daughters. Her son
and youngest daughter are present for the meeting. Up until 3 weeks ago, the
patient was living on her own. She went to see her primary care physician and was
diagnosed with a urinary tract infection. Shortly thereafter she fell at home and
was taken to the emergency room at the local hospital. When she left the hospital,
she went to her older daughter’s home for 1 week where she fell again. The family
decided it was better for the patient to return to her youngest daughter’s home
for care.
148 communication in palliative nursing
Within a week, the patient returned to the hospital and the family learned that she
has cancer. The patient spent 5 days in the hospital. The youngest daughter explains,
“It was a nightmare—every sound rattled her. She couldn’t sleep, she didn’t want to
eat.” The family requested a private room, and on the third day in the hospital she was
moved to a private room. From the hospital, the patient was transferred to a rehab
facility. During this time the daughter reports “she is in despair,” and the patient’s son
explains “she’s giving up.”
Both children report that their mother has talked about dying and has specifically
said what she wants, including specifications for what songs to play at her funeral, and
a request “to be buried with daddy.” Still, the youngest daughter reports numerous
incidents of incoherence throughout the past 3 weeks. “At this point, it’s not an option
for her to go home so . . . ”
Discussion
At this point, what would you say to this family? Here are some prompts to help you
get started. . . .
youngest daughter: “We haven’t asked her if she’s hungry; we just keep
trying to feed her. I’m worried about her dehydration and suffering. If it
wasn’t the diarrhea, I would see it as a natural process . . . but I feel like it’s
me not taking care of her . . . [crying] I want to feel like I’m not bailing on
her. I feel like I’m accelerating it.”
son-in-law: “It’s just so hard to believe that 3 weeks ago she was on her own.”
son: “How will she die?”
149 Family
Discussion
At this point, what would you say to this family? Here are some ideas to help you get
started . . .
Discussion
At this point, what would you say to this family? What type of family system are you
working with (open or closed)? What family communication pattern does this family
demonstrate? Do any dominant caregiver types emerge?
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6
openings
Anxiety. Fear. Tension. These are feelings and emotions that indicate a nurse should
promote effective communication and seek interdisciplinary collaboration rather
than avoid finding a potential solution. Peter has observed the seriously complicated
151
152 communication in palliative nursing
situation of Felipe and his family and has an accurate understanding of the complica-
tions that Felipe faces in the weeks ahead. But unlike the other clinicians working with
this family, Peter is uniquely positioned to engage in communication during the most
pivotal point of life for Felipe and his family. Peter can create an opening as he commu-
nicates with Felipe and his family and shares the “truth” that Carmen (the daughter)
longs to hear, while moving beyond this bad news information to a productive conver-
sation about transitions and goals of care.
The Oxford English Dictionary uses words like connection, opportunity, possibility,
launching, and start to describe opening. This chapter examines the communication
a nurse shares with patient and family at pivotal moments in illness; this communi-
cation can create openings for positive change. The junctures in illness explored in
this portion of the book encourage a reframing of moments of tension. Rather than
a nurse being repelled by fears of inadequacy in those junctures of transition, a nurse
can champion a patient/family and use communication to engage some of the most
challenging and rewarding clinical moments experienced in nursing practice. These
are the moments when nurses can advocate for the best care by sharing in painful times
of isolation and change for patients and families.
Some commonly experienced communication around junctures of care occurs at
the time of initial diagnosis, around treatment decision making, at the point of recur-
rence or complication, as well as when coaching patients about how they can share
their thoughts with family and how family can share thoughts with a patient. Nurses
play a key role at the end of life as patients and families struggle to forgive one another,
to say good-bye, and to locate spiritual support as they experience a loss of connec-
tion with the life they no longer know. These difficult moments present opportunities
and possibilities for resilience, but resilience and coping are less possible if the patient/
family as well as health care professionals participating in care do not attend to painful
transitions, fears, and inevitable changes.
Now that the concept of opening has been introduced, this chapter will detail the
complex patient/family communication that nurses can facilitate in transitions of care,
describe a few communication concepts to refine thinking and provide support for
improvements in clinical practice, and finally, provide practical applications to shape
nursing care plans in palliative care.
naïve, artless, and gifted process. Instead, studied communication is central to all clini-
cal practice decisions and processes and demands education, intensive practice, and
reflection (Dahlin, 2010; Goldsmith, Wittenberg-Lyles, Rodriquez, & Sanchez-Reilly,
2010). This resource heralds the vital role communication plays and the increasing rec-
ognition of communication’s importance by the field of nursing itself. Difficult con-
versations with patients and families coincide with transitions in care and truly require
intimate and disclosive exchanges between patient/family and nurses.
Nurses perform the heavy lifting when it comes to stewarding patients and fami-
lies to a sense of understanding throughout their disease process. As such, the pivotal
points of communication that extend beyond the bad news exchange often mirror the
disease process for a patient and family (Malloy, Virani, Kelly, & Munevar, 2010). But
just as a disease does not travel the path of a script, neither does the unfolding/tim-
ing of conversations between a patient, family, and nurse. Nurse conversations with
patients and family after the receipt of bad news have not been extensively studied, but
scholars do know that this nursing communication task is rated as highly challenging
and very common in occurrence (Malloy et al., 2010).
Discussing spiritual concerns with patient and family, talking about cultural needs
and concerns at the end of life, processing suffering with patient and family, consider-
ing decisions about advanced directives, DNR orders, withholding or withdrawing sup-
port, and sharing in the news of recurrence or fear of recurrence with patients and/or
family are some of the pivotal points that present themselves in intimate conversations
with the nurse. Nearer a patient’s death, a nurse might engage in conversations with a
patient about saying good-bye to the family or with the family about saying good-bye
to the patient. Talking about forgiveness can also be a profound need of patients and
families at the end of life, and the nurse who has provided the intimate physical care
and support will often be the likely interlocutor suited for these interactions.
The nurse is central to effective communication in these and other critical moments.
Instead of approaching these transitions in care as a list to complete, which has his-
torically been the medical model for communication protocols, the nurse’s skill set
provides opportunities for conversation in relationship with patient and family as they
deal with serious illness. The nurse has special access and opportunity to respond to
cues from the patient and family and accompany them through the most challenging
conversations of serious and terminal illness. Research investigating communication
about terminal illness prognosis indicates that adaptive communication is necessary
and must be based on patient and family acceptability of information. Additionally,
studies show that news of recurrence, prognostic estimations, or discussion about hos-
pice placement must be diffused depending on how a patient/family receives the topic
(Eggly et al., 2006; Wittenberg-Lyles, Goldsmith, Ragan, Sanchez-Reilly, 2008).
In other words, some may need to hear and discuss a particular feature of bad news
many times and even then still might not understand or accept it. Further, some fami-
lies may choose never to engage in a conversation about terminal prognosis but will
still need to talk about transitions in care for the end of life. This chapter presents
nuanced strategies for engaging these vitally important and intimate conversations
essential for patients and families to experience the best quality of life at the end of life.
154 communication in palliative nursing
Social Well-Being
• Family dynamics Spiritual Well-Being
Intimate conversations that facilitate openings for patient and family can profoundly
and positively impact the quality-of-life domains as depicted in Figure 6.1.
Talking with a patient and his or her family, or demonstrating presence without
verbally communicating, can and does affect clinical outcomes and costs not only for
the patient and family, but also for all stakeholders (Matsayuma, Reddy, & Smith, 2006;
Zhang et al., 2009). As the quality-of life-domains are applied to concepts of com-
munication, two particular communication constructs, or theories, will support the
challenge of engaging patients and families in their intimate moments of illness tran-
sition: Communication privacy management theory, and social penetration theory.
Both theories wrestle with the problematic of disclosure and boundaries. Also, each
theory actively represents the relational connection human beings share—a concept
understood and valued by nurse clinicians.
message, carry the burden or responsibility of knowing the information, and face the
challenge of delivering the message to others (Petronio & Lewis, 2011). In essence,
nurses take on the role of privacy advocate.
nurse’s desire to let Bob know and help Mary with this pain could cause boundary
turbulence.
Once private information is self-disclosed to another individual, that individual
assumes co-ownership of the information. Boundaries are then managed through
rule management processes that are negotiated between individuals (Petronio, 2002).
Personal boundaries between dyadic partners can be expanded to become collective
boundaries between multiple persons, each with different boundary conditions. Thus,
individuals manage personal, dyadic, and group boundaries of private information
through privacy rules, which dictate boundary conditions. When a family member
is chronically or terminally ill, each family member itemizes different things that
become private in the midst of knowing that someone is changing/dying. Terminally
ill patients and their family members must ultimately manage collective boundaries in
the uncertainty of illness.
Personal boundaries between nurses, patients, and family members expand to
become collective boundaries such that each has a different set of boundary condi-
tions. Boundary coordination is based on the complexity of co-owning or sharing
private information that belongs to people collectively (Petronio, 2002).
Avoid silence in difficult moments. Silence only Silence allows for patient and family
creates more awkwardness. disclosure and communicates interest
and presence.
Dying patients and family members only want to Patients and family have existential
talk about positive things. concerns and fears to process.
Patients and family members don’t want to ask a Patients and family want to share a
clinician questions about dying and loss. relationship with clinicians and process
their questions about dying and loss.
When a patient is dying, there is little health care Health care professionals can provide
professionals have to offer. comfort measures and assistance to a
family transitioning their place and
goals of care when a patient is dying.
Adaptations from Gauthier, D. (2008). Challenges and opportunities: Communication near the
end of life. MESURG Nursing, 17(5), 291–196. Knauft, E., Nielson, E. L., Engelberg, R. A., Patrick,
D., & Curtis, J. (2005). Barriers and facilitators to end-of-life care communication for patients
with COPD. Chest, 127, 2188–2196. Kristjanson, L. (2001). Establishing goals: Communication
traps and treatment lane changes. In B. R. Ferrell & N. Coyle (Eds.), Textbook of Palliative Nursing
(pp. 331–338). New York: Oxford University Press.
159 Openings
Of course, one person alone cannot experience intimacy. Intimacy is engaged via
self-disclosure, confiding, and sharing—within a trusting relationship established on
the premise that the best solutions will be identified and enacted. The roles that both
the patient and nurse play (or the family and nurse) are significant. The dynamic com-
munication they share will make this intimacy possible (Reis & Shaver, 1988).
Knowing a patient allows a nurse to truly care for that patient (Zomorodi & Foley,
2009). The core of intimacy stems from disclosure of personal information with the
expectation that there will be understanding and acceptance. Although planning and
problem solving can occur without self-disclosure, problem solving is elongated and
protracted for the person who does not self-disclose (O’Connell, 2008). In nursing,
disclosure affirms and recognizes the interdependence of the patient and nurse, or
family and nurse.
Nurses often develop a level of health care intimacy with patients and families in the
course of caring for them (Dowling, 2008). This leads back to the idea of social penetra-
tion theory (SPT) and nursing. If a nurse develops a relationship of psychosocial care
and disclosure with a patient and family, what does that mean for the nurse in terms of
communication? The following elements from social penetration theory will guide a
nurse in strategizing communication behavior to maximize opening opportunities.
Complementary behaviors demonstrate interest in a speaker (patient/family) as they
disclose information. These behaviors maintain the focus on the patient or family, for
instance, and do not “one-up” the story, need, or concern of the individual with the
primary concern. So, for example, if a colleague complains of a cold and the long hours
he or she is working, complementary behavior would include receptive communica-
tions rather than communications that would pull focus toward the recipient, and
his or her health and exhaustion. Complementary behaviors are more important and
beneficial to the creation of patient/family/nurse intimacy than reciprocal behaviors
and communication (Prager, 1995).
Reciprocal communication equals and even surpasses the other’s conversational
content in terms of breadth and depth of disclosure. An example might be a patient
who is in her final stages of advanced cancer. A palliative care clinician comes by this
patient’s room and overshares about her own children and Thanksgiving plans in
response to the patient’s polite inquiry. A focus on the patient, her family, her chil-
dren, and her atypical Thanksgiving experience needs to be processed instead. In other
words, for the patient/family, it is more important that the clinician engage in com-
munication behaviors that express investment, care, and attention rather than a recip-
rocated disclosure. In fact, a reciprocal disclosure has the potential to diminish and
even dismiss the difficulty experienced and imparted by the patient or family. Another
way to describe this is to say that intimacy in the clinical setting is to position the nurse
in the meaning-making process with the patient or family, rather than separate out a
nurse’s meaningful experiences from the patient/family. Examine the two versions of
the same interaction in Box 6.1.
In the first version, an opening for the nurse’s self-disclosure occurs with a family
member in the course of interaction. The nurse makes good use of this self-disclosure
to establish commonality and trust but, most importantly, keeps the focus on the
160 communication in palliative nursing
Version #1
Version #2
patient/family member—continuing the interaction. Note that the impulse for dis-
closure of private information operates as concern for the family member and her
experience and seeks to find ways that Mrs. Holbrook can find meaning in her cur-
rent struggle. In the second version, the nurse also shows concern and orientation in
the direction of this family member’s angst. However, the nurse, presented with an
identical opportunity for disclosure, shifts the meaning-making intent away from Mrs.
Holbrook and onto the nurse’s personal trial of caregiving. While there is not a sense
that the nurse is removing a caring presence from this family member, there is a read-
justment of self-disclosure that moves into reciprocal rather than the complementary
behavior/communication. It is exactly at this moment of tension and privacy disclo-
sure that the nurse can facilitate the patient or family member in making meaning
and processing inevitable transition choices in his or her path. Maintaining focus on
patient or family disclosure will continue to communicate trust and an expression of
interest and concern.
161 Openings
(continued)
162 communication in palliative nursing
dnp: We can get you the aspirin. As many as you need. I Complementary
always think these hard times come to me in groups, too. disclosure/behavior as
What is the hardest thing right now? opposed to reciprocal.
kt: He needs me. When he had surgery, I would sit in Intimate opening
the chair next to him and hold hands [with him]. I opportunity
would get in the bed and cuddle with him.
dnp: Well, he has a private room so you can do that. You
can get in bed with him.
kt: I can? Oh great.
dnp: Will you stay here tonight?
kt: (nods yes)
dnp: There are five things that I think help to know in times
like this—things that people might want to say to each
other—I love you, I forgive you, please forgive me, I’m
sorry, good-bye. Would you like me to write this down?
kt: Yes. I don’t have anything to forgive except him Family member
dying. (crying again) demonstrates a level of
dnp (writes it down and gives it to her) understanding facilitated
kt: I hate to tell him good-bye. I’ll just tell him I love him and I by nurse disclosure and
don’t want to be without him and I’ll always love him. intimate openings.
As the meeting ends, KT asks DNP about his ability to see. DNP explains that it is not
likely and to focus on his hearing. DNP reminds her to bring in music for him. KT
hugged DNP and went back to patient’s room. Two days later Mr. Turner died.
of Nursing Practice (DNP) on the palliative care team and Mr. Turner’s girlfriend, KT.
Some background observations to the events leading up to this interchange via the
team meeting are included.
This single conversation between the DNP and the family member (KT) of a ter-
minally ill patient provides an opportunity to look very closely at the communication
events that contribute to intimate openings, self-disclosure, and ultimately facilitating
transitions for a patient and family in this challenging time. Though this example of
Mr. Turner’s girlfriend, KT, closely examines the conflicted need to face active dying
and saying good-bye, there are other transformative communication opportunities
that can be facilitated by a nurse.
The extended case study in Figure 6.2 includes identifiers that note intimate open-
ings the nurse will communicate during the course of Mr. Romero’s illness, not only
to Mr. Romero, but also to the many stakeholders in this family’s experience of com-
plicated terminal illness. Central to the work of nursing is soliciting information from
patients and families, but also receiving information that might not have been requested
(Petronio, 2011). As nurses have noted in previous research, the more challenging dis-
closure events present predicaments that influence communication with the patient
and the family, create moral distress for the nurse, and can potentially mediate the
delivery of appropriate care (Schulter, Winch, Holzhauser, & Henderson, 2008). Some
research identifies a unique challenge in the nurse–patient or nurse–family dynamic
that can include information dumping, in which high rates of disclosure are revealed
to the reluctant nurse confidant (Helft & Petronio, 2007). Communication coping and
adaptability to manage this sticky situation will be further explored in Chapter 7.
Mr. Romero is a 70-year-old retired bus driver who had a history of hypertension, dia-
betes, and COPD. He was diagnosed with congestive heart failure six months ago and has
been seen frequently by a cardiologist in the clinic setting. He has been managed with sev-
eral cardiac medications but over the last few weeks has had several acute episodes of dysp-
nea. Today, the cardiology clinic nurse, Eva, asks Mr. Romero if there is something “going
on” in his life, as she is concerned about his increased shortness of breath and anxiety. Mr.
Romero admits that his wife was diagnosed with breast cancer and he has been devastated.
He said with a great sadness- “Just when I thought nothing could be worse than this heart
failure, my wife is struck down with breast cancer. She is my life. How can this be? Is there
no God? My wife, she never did a thing wrong. And now- Cancer.”
• Self-disclosure
• Psychological well-being
The nurse, Eva, offers her support and assures Mr. Romero that the clinic is “there for him”. Eva
listens quietly as Mr. Romero goes over again what it was like to hear the news of his wife’s cancer.
• Self-disclosure
• Psychological well-being
Eva assists Mr. Romero into the exam room and then she confers with Dr. Evans before he sees
Mr. Romero to share the information about Mr. Romero’s wife.
Three weeks later Mr. Romero returns to the clinic accompanied by his son. Eva is struck by the
rapid decline in Mr. Romero’s status. His cardiac evaluation reveals decreased cardiac function,
worsened dyspnea, edema and also weight loss. Accompanied by his son John, Eva takes the oppor-
tunity to ask John how things are going at their house. John shares that both of his parents are doing
very poorly and how after 51 years of marriage they seem to be both slipping away, each suffering in
the awareness of the other’s illness. John also tells Eva that his mother is now on hospice care as she
declined chemotherapy and has insisted on having her remaining months of life devoted to caring
for her husband. Eva gives John her card and suggests he have the hospice nurse contact him so that
they can talk about how to best coordinate care for his parents.
• Self-disclosure
• Physical well-being
One week later Mr. Romero is again seen in the clinic. His cardiac status continues to decline
and he is now dependent on oxygen and constant assistance. John tells Eva that he and his siblings
are now rotating weeks to stay with their parents as both decline. Eva asks John if his father has
completed an Advance Directive. She notes that she had given Mr. Romero an Advanced Directive
form to complete but it was never returned. John becomes almowst hostile, insisting that his father
will not complete such a form as it is “against their beliefs.” Eva asks John to describe their beliefs
and how Mr. Romero would want to live at the end of his life in regard to those beliefs.
• Spiritual well-being
John also shares that his sister Martina is “furious” with everyone who has given up on her
parents and she wants both to change doctors and get some “real” care. Eva offers to speak with
Martina and John expresses his thanks. He says “my crazy sister” always shows up to claim I can’t
do anything right for them.
Two weeks later Eva receives a call in the clinic from John to say Mr. Romero was admitted to the
hospital with acute chest pain. He is in the CCU. Eva conveys the message to Dr. Evans who will be
making rounds later in the morning. Eva also calls the hospital social work department and talks
with the Cardiology Social Worker to convey information about Mr. Romero. Later in the day Dr.
Evans returns to the clinic and is sad to report that Mr. Romero has had a MI, is on a ventilator, and
is unlikely to survive. Dr. Evans is very distressed, telling Eva that he has known this family for over
three years and is very fond of them. Eva listens to Dr. Evans distress, assures him of how much his
care has meant to the family. Eva also suggests that Dr. Evans consult the palliative care service, sug-
gesting that the family would benefit from the services of chaplaincy and the palliative care team as
they face decisions about life support.
• Spiritual well-being
Dr. Evans expresses hesitancy that he doesn’t want to “abandon” his patient, Eva assures him
that involving palliative care would be a great sign of his concern for Mr. Romero and his family. Eva
also offers to call the palliative care service to convey the information for the referral.
Later in the week, Mr. Romero’s family participates in a family conference lead jointly by Dr.
Evans and the palliative care team. With the support of the hospice, Mrs. Romero was able to come
to the hospital although very ill herself, to say goodbye to her husband. The chaplain arranged for
the anointing of Mr. Romero and served communion to the family. The family also agreed to a DNR
order and two days later Mr. Romero died.
Three weeks following MR. Romero’s death, Eva received a call from John to say that his mother
had died peacefully at home with hospice. Eva thanked John for calling and expressed gratitude for
having had the opportunity to support this family during this time. She was able to hear about the
positive as well as challenging fi nal days John experienced with his family.
Time of initial ✓ ✓ ✓
diagnosis
Communication ✓ ✓
around treatment
decisions
Talking with patients ✓ ✓
about talking with
family
Communication ✓ ✓
around recurrence
Talking with family ✓ ✓
about talking with
patient
Communicating about ✓ ✓
saying good-bye
Narrative nursing invites the patient/family story and does not expect a certain end-
ing or outcome. Rather, narrative nursing, in conjunction with many of the ideas in
this “O” chapter, advocates for the individual experience of a patient/family, and find-
ing ways to help them navigate and process that experience. Facilitating access to pri-
vate health information, creating intimate openings to process transitions in life and
care, and understanding the impact of self-disclosure on patient/family relationships
all play an important role in practicing COMFORT.
Used with permission from Casarett, D. J., & Quill, T. (2007). “I’m not ready for hospice”: Strategies
for timely and effective hospice discussions. Annals of Internal Medicine, 146, 443–449.
Assessment
Nursing the whole patient includes assessing the needs of the whole patient, includ-
ing his or her life outside of the hospital or outpatient facility. The factors of social,
spiritual, and psychological well-being become crucial in terminal illness care pla-
nning for nurses as physical cure fades from the picture. Patients’ comfort and hap-
piness, but most particularly their social situations, are quintessential concerns as
transitions and goals of care are assessed. As an example, nurses identify their con-
cern about family coping as more intense than their concern for patient coping
at the end of life (Peterson et al., 2010). Despite nurse awareness of the profound
impact of family and home on patient care and location, nurses feel that a consid-
eration of these issues is still mightily underemployed in end-of-life nursing com-
munication skills (Reinke et al., 2010). Peter, the RN case manager, is surrounded
by information about Felipe’s social life but still does not identify a way to engage
either Felipe or his family in an intimate opening about the difficult reality of
Felipe’s prognosis and care needs.
The quality-of-life domains are a most useful construct to employ in assessing the
transitional needs of a patient. Examining this initial checklist will provide a starting
point for thinking about sharing in transitional communication with patient or family.
Table 6.3 is a list of potential tension or avoidance triggers and QoL domain impact areas
(Ferrell, 1996). As noted in previous sections of this chapter, the desire to disengage from
these areas of tension will produce and reproduce more tension the longer it is avoided.
168 communication in palliative nursing
Keeping in mind all of the sensitivities of cultural difference, health literacy levels, and
the individual patient, the tensions of end-of-life care remain somewhat consistent across
patient populations as decisions about place and goals of care are inevitable.
The literature on palliative and end-of-life nursing and medicine provides very spe-
cific information about the physical indications of a declining body. Identifying the
physical needs of a patient who is struggling with serious illness is one source of assess-
ment information that can indicate to a nurse that a conversation about transition is
of primary import. Table 6.4 includes some factors that are associated with a limited
prognosis and can provide basic triggers for communication addressing palliative or
hospice care.
Observing patient or family communication will provide a great deal of informa-
tion about the needs of a patient facing life-limiting or terminal illness. In the context
of life-limiting and terminal illness, patient expression to hasten death is an outstand-
ing invitation for discussion about his/her suffering. Often the need for relief is closely
related to transition in place of care, goals of care, or accepting the reality of immi-
nent dying and death. Patient communication can occur in the spoken word, through
silence, in writing, or by action. Here are some examples of communication about the
hastening of death that indicate an intimate nurse–patient opening:
It is likely that Felipe knew he was very sick but may not have talked about this with
anyone, least of all his health care team. His clinicians, despite their expert profession-
alism, did not successfully address the triggers in Felipe’s case. Felipe’s and his family’s
need to know about his life-limiting illness was not part of their decision-making pro-
cess in his care plan.
Plan
Felipe’s wife believed that Felipe was improving. At the same time, Peter knows that
there is a heavy suspicion of doubt among the children of Felipe as the daughter,
Carmen, asked to hear the truth about Felipe’s prognosis. With this information, Peter
could have planned for conversations with Felipe and his family about the reality of his
prognosis and all of the ramifications this will have on their goals and place of care.
169 Openings
- What is being avoided - Does the patient possess - Has the nurse gathered
between clinicians and this private information patient perspective on this
patient? about his or her situation? tension?
- What is being avoided - Can the patient possess - Has nurse gathered
between patient and family? this private information family perspective on this
about his or her situation? tension?
- What is being avoided - Does the family posses - Has the nurse presented
between family and patient? this private information prompts to collect patient/
about their situation? family disclosure?
- What is being avoided - Can the family possess - Identify prompts that
between patient/family and this private information would accomplish patient/
health care team? about their situation? family disclosure.
Once the point of tension and temptation to avoid communication have been iden-
tified, a plan for engaging a patient and/or family about a challenging time or transition
in illness can be designed. The two theories that support the ideas in this COMFORT
component are central to preparing for this kind of conversation. First, communica-
tion privacy management theory helps explain how private information is shared and
protected. Second, social penetration theory theory provides an understanding about
the ways in which self-disclosure (amount and detail) advances personal relationships
and decision making.
Determining the amount of private information that has or has not been shared
with a patient and family, as well as identifying the kind of boundaries that are upheld
in a family, is important as a nurse plans for an intimate conversation about illness.
170 communication in palliative nursing
Boundary
Understanding/ Patient and Family
Tension Communication Depth of Disclosure/ Communication
Identified—Openings Strategies Communication Strategies Indicating Tension
Rephrasing Rephrasing
- You describe your - So, it sounds like
family as working anger toward your
hard to keep your Dad is about his
parents from choice to decline
having to know dialysis.
the challenging
and hard things.
Statements Statements
- Every family is - Tell me what is
unique. My family important to you
is unique. With right now.
its own set of - I have also had very
challenges. hard times that
- Sometimes great seemed impossible.
opportunities
emerge for families
to connect in the
most challenging
times.
171 Openings
For example, perhaps the family is protecting the patient from knowing the progno-
sis. Inviting the patient/family to share their experience with difficult information or
changes in care is essential to palliative care. The patient and family must make mean-
ing out of the experience, and nurse self-disclosure should only serve this end; thus,
complementary disclosure is the most clinically sound practice in providing the best
care for patient and family. Essential elements in planning intimate opening commu-
nication are identified in Table 6.5. The chart does not demand a sequential applica-
tion to accomplish planning, but rather, an awareness of the components impacting
planning. Depending on the particular situation, some of these categories may be more
knowable to the nurse than others.
The nurse might be in possession of a wealth of information concerning patient
and family awareness but has avoided assessing and planning for these challenging
moments of communication. However, through intervention a patient and his or her
family can be propelled into a much-improved quality of life.
Intervene
Locating the language or the verbal communication to use in challenging transitional
moments with patients and families can produce anxiety in clinicians and has, in fact,
been a motivating factor behind the recent movement to provide clinicians with com-
munication protocols. Backing away from the idea that anxiety and tension must be
removed and avoided, and thinking instead that these sensations herald a very posi-
tive opportunity for nurse, patient, and family, is an approach that honors the patient
experience and unleashes his or her stories and needs to help all other stakeholders
in the illness process provide the best care for patient and family (Gunaratnam &
Oliviere, 2009). There are no sequences of talk prescribed in the COMFORT frame-
work, but instead, principles and components guide a holistic communication experi-
ence in an effort to care for the entire patient. Nonetheless, it can be extremely helpful
to gain a sense of particular language or communication behavior that could be poten-
tially employed or borrowed to assist in a particular instance. Intervention involves
Clarify goals/values. - What do you hope for most in the next month?
Readjust goals. - In case you cannot make it to the wedding in person, could you
think of another way to be there? A letter we could help you write,
or a special videophone visit the day before the wedding?
Identify needs. - Do you think you might need support at home?
- What kinds of help might you need?
- Would it be helpful if we could arrange _____?
Connect goals with - It sounds like you want to be at home, enjoy your pets, and see
care needs. your husband as much as possible. A service called hospice would
support all of those hopes by . . .
(continued)
172 communication in palliative nursing
Introduce hospice. - The best way we know to give you the help you need and assure
that you can be at home is through a care service called hospice.
- A team of professionals will care specifically for you and enable
you to stay at your house. This team is specifically trained and
experienced in caring for very ill people at their homes.
- You seem upset. Does talking about hospice make you sad?
- Are you surprised to learn about how sick you are?
- I can imagine this must be very hard for your family, to know how
sick your sister is; you obviously are a very close and loving family.
- As long as I have been in health care, when it came to deciding on
hospice for my family member it was still very emotional.
Explore distress/ - Tell me about your sadness.
anxiety. - What is upsetting you the most?
Reassure. - Hospice helps people live as well as they can for as long as they can.
- Hospice has the goal of giving you the best quality of life
possible—and that means being at your house with your family.
- You can make the most of your time.
- Whatever you decide, I will be your nurse. I will continue to care
for you.
- How about we all think this over? You know I will be here to talk
with you about this, to process this decision.
- I would be glad to talk with you more about this, and we can even
invite a hospice nurse to join us to get more perspective on things.
- Let’s talk about this tomorrow. You are upset. Be with your wife now.
Adapted from Casarett, D., & Quill, T. (2007). “I’m not ready for hospice”: Strategies for timely and
effective hospice discussions. Annals of Internal Medicine, 146, 443–449.
are made between patient and family communication needs in transition and poten-
tially useful strategies.
Late-stage hospice intervention is still the trend in the United States. For clini-
cians and health care professionals, talking about the hospice intervention can be the
most difficult discussion to share with a patient and family. In many cases, this occurs
because little open communication about prognosis or disease progression has been
shared between clinicians and patient/family, or patient/family acceptability is so low
that information processing is unsuccessful (Wittenberg-Lyles, Goldsmith, Ragan, &
Sanchez-Reilly, 2010). A crisis often precipitates the conversation about hospice care
benefits, further compromising the communication abilities of all parties involved.
Language suggestions might be of some service in intervening in a patient’s course of
care with the concept of transitioning to hospice care (see Table 6.7).
Evaluate
Once navigated, an essential step to evaluate any nursing plan and practice is to evaluate
the action taken and its outcome(s). Chapter 5 describes some components of reflec-
tion and its fruitful impact not only on patient and family care, but also on increased
resilience for nurses as they face a grueling schedule of interactions and conflicts. The
evaluative suggestions for this COMFORT component are presented in three parts:
self, peer, and patient/family reflection.
Following an intimate opening interaction that was initiated in response to tension
in the care of a patient/family, consider the following points of reflection:
Understanding a patient’s needs or family need first begins with considering the
nurse’s needs, qualities, and uniqueness. Reflecting on challenging interactions enables
the clinicians to become more self-aware of how they engage certain situations and
also what effect they can have in complex illness, and ways in which others’ lives can be
improved (McGuigan, 2009).
A second element of reflection is moving beyond self-reflexivity and widening the
learning lens to include a collaborative experience (Atkinson & Claxton, 2000). The
support offered through a small group discussion or dyadic interaction introduces
additional perspectives for a nurse. Evaluate intimate opening experiences with a col-
league using these guidelines:
o You seem like you are feeling better about things today. I am interested to know what
helped you.
o Was my explanation too complicated during our previous meeting?
o What would have helped you in our discussion last week that you did not receive?
CHAPTER SUMMARY
This chapter offers specific tools to assist the nurse in traversing the challenging
yet profoundly rewarding moments of transition that require the clinical prac-
tice of intimate communication with patient and family. Revisioning tension and
avoidance as a sign that communication is needed rather than a sign that encour-
ages evasion is essential in helping a patient/family make meaning out of their loss.
Observations of tension might be clear indications of a needed transition in place
or goals of care. Complex interactions with patients and families coincide with
transitions in care and require intimate and disclosive exchanges between patient/
family and nurses.
Communication privacy management theory considers what is private informa-
tion and how that information is private depending on the relationship people
share. Social penetration theory assumes that all relationships are in development,
or progress, and that self-disclosure is at the nexus of relationship development.
Together, both of these theories support communication strategies that nurses
can employ to achieve positive outcomes in these intimate opening conversations.
Intimacy in the clinical setting places the nurse in the meaning-making process
with the patient or family, rather than separating out a nurse’s meaningful experi-
ences from the patient/family. Self-disclosure that is complementary rather than
reciprocal will enable the patient and family to experience a helpful closeness
with the nurse.
175 Openings
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ADDITIONAL RESOURCES
International Listening Association (ILA): www.listening.org
This site contains comprehensive information and convention and resource material about
the process of receiving, constructing meaning from, and responding to spoken and/or
nonverbal messages.
Play Therapy International: www.playtherapy.org
This site is intended to provide an international information resource for therapeutic play,
play therapy, filial play, and creative arts therapies. It is designed for anyone interested in
helping children with emotional literacy.
Schaefer, C. E., & Kadson, H. (Eds). (2006). Contemporary Play Therapy: Theories, Research
and Practice. New York: Gilford Press.
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and providers: A communication privacy management perspective. In M. Miller-Day
(Eds.), Family Communication, Connections, and Health Transitions (pp. 269–298). New
York: Peter Lang.
DISCUSSION QUESTIONS
1. What are some challenges that might occur in navigating the private boundary of
a patient when you have news that they do not yet know?
2. At what point does a private boundary become a collective boundary? Identify an
example from clinical practice that clearly demonstrates this change.
3. Describe how a nurse might deal with the boundary turbulence produced when
one adult child (a long-distance caregiver) arrives at her father’s bedside and
disagrees with other adult child’s care choice to withhold IV fluids. The local child
had not shared these care decisions with the sibling for fear there would be dissent.
4. How can a nurse recognize the importance of self-disclosure and its impact
on the patient–nurse relationship, but also monitor the importance of using a
complementary rather than reciprocal kind of self-disclosure?
5. Apply CPM to Peter’s case. What private information is Peter already in possession
of, and what boundary turbulence might be predicted?
6. Peter had a great deal of breadth knowledge about Felipe’s case. What specific
communication strategies could have been used to gain depth and potentially
move into an intimate opening with this patient/family?
7. Think back on an instance of patient/family tension. How was it handled? Name
some specific communication strategies that could have produced a better
outcome.
8. What are some ways to initiate an intimate opening for a delirious or unconscious
patient who has received curative-only care?
teaching resources and materials
palliative care consult nurse: Your brain tumor will not go away.
end-stage cancer patient: You will have to talk to my oncologist about our
plan.
palliative care consult nurse: We can make you more comfortable and
relieve the pressure, but we cannot take the tumor away.
end-stage cancer patient: She (oncologist) told me the radiation was our
next plan. I will be home soon. I just want to get my arm back moving.
palliative care consult nurse: Your brain tumor will not go away.
(subtext: You will not survive this tumor’s growth and spread.)
end-stage cancer patient: You will have to talk to my oncologist about our
plan.
(subtext: I am working with my oncologist, not you. We are working toward
my restoration.)
palliative care consult nurse: We can make you more comfortable and
relieve the pressure, but we cannot take the tumor away.
(subtext: We want to work with you, too, and give you support and comfort.
You will not survive this tumor.)
179
180 communication in palliative nursing
end-stage cancer patient: She (oncologist) told me the radiation was our
next plan. I will be home soon. I just want to get my arm back moving.
(subtext: I want a cure and am seeking one. I will be home just like before I
got sick.)
In pairs, students will perform their “scripts” with text and then again including sub-
text. Following their scripts, they should share a discussion addressing how the shared
information forms a collective boundary while the withheld information creates a per-
sonal boundary. Nursing students should be encouraged to think about how the ratio
of the collective boundary to the personal boundary affects the relationship and vice
versa.
Exercise adapted from West, R., & Turner, L. (2007). Introducing Communication Theory: Analysis
and Application (4th ed.). New York: McGraw-Hill.
Bob and his slightly younger sister, Dorothy, arrive at the clinic. Both siblings
are single and in their early 70s. Bob is Dorothy’s caretaker. The two of them
live alone in their childhood home. Dorothy is wheelchair bound from her
end-stage cardiac disease and also has COPD and dementia. She is on oxy-
gen. Bob is attentive, but overwhelmed and unprepared by the increasing
demands of Dorothy’s care. In addition to her breathing challenges, Dorothy
is barefoot, feet swollen and unkempt. Bob shows kindness and calm as he
deals with his sister, but also limited ability to understand her disease or com-
municate with others. As Bob checks in at the front desk, Dorothy begins to
scoot her wheelchair across the lobby floor at a snail’s pace. She is purposeful
in her effort, her lungs fighting for air with each movement. As Bob finishes
his interaction with the office staff, he notices Dorothy has positioned herself
at the door to the lobby restroom, but cannot muster the strength to move
forward over the ½” grouted crevasses in the tile floor. “Dorothy, I can’t get
you in there. I can’t. You can’t get yourself in there,” says Bob. Dorothy stares
down the half-open door and black void that is the restroom. She cannot go
further. Bob cannot take her further. “Unlock your chair and let me push you
back over here.” Dorothy mutters in a slurred sound, “I don’t know how to
unlock the chair.” Bob releases the locks on her chair, and it is easy to imagine
his deep weariness. Moments later, Dorothy’s name is called by a young office
181 Openings
assistant. Bob sinks blankly into his chair, knowing that for these 15 minutes
he can rest. Someone else will have oversight of Dorothy. Dorothy, struggling
for air, frustrated and hurt by her brother’s response, goes down the hall to
meet the nurse practitioner: someone unaware of Dorothy’s life, relation-
ships, or circumstances.
After sharing this story with a class, encourage students to meet in groups and dis-
cuss how to proceed with this patient from a communication transition standpoint.
Here are some questions that will facilitate a discussion about moving Dorothy toward
transition.
• Would it be obvious to a nurse practitioner that this patient needs further support and
care in addition to the care provided by her brother?
• Would the nurse practitioner try to find out about the home caregiver, even if this
person were not in attendance at the appointment?
• What would the nurse do upon realizing Dorothy’s dementia?
• Without a previously existing relationship with Dorothy and her family, how does the
nurse proceed moving this family toward a better care situation?
How to proceed:
1. Before revealing the color chart or the instructions for disclosure, pass around the
bag(s) of M&Ms or Skittles. Instruct students to take as many as they want from
the bag, but be sure to tell them that they must take at least one.
2. After all students have taken at least one piece of candy, then display the chart that
lists the type of disclosure associated with each color of candy used.
3. In groups or as a class, instruct students to answer the question for each candy
that they chose from the bag. If students chose several candies, they must answer
182 communication in palliative nursing
several questions. Students may find that they will be answering the same question
multiple times, but using different answers, if they chose several of the same color
of candy.
4. Lead a class discussion that focuses on these questions:
• How would you apply the concepts of breadth and depth of disclosure to the informa-
tion that you just shared during this exercise?
• Which types of information were easier to share with the group/class? Why? Which
were most difficult? Why?
Exercise adapted from West, R., & Turner, L. (2007). Introducing Communication Theory: Analysis
and Application (4th ed.). New York: McGraw-Hill.
• Show video segment. Share a brief discussion about this segment and the characters
of Vivian and Susie.
• Revisit the scene and search for moments of social penetration theory demonstrated
by Susie. Note examples of depth.
• Revisit the scene and search for moments of social penetration theory demon-
strated by Vivian. Note examples of depth. Note examples of breadth. How many
of each?
183 Openings
Source used in this exercise: Edson, M. (1993). W;t. New York: Faber and Faber, Inc.
Four brief role play scenarios are included here and should be explored in very small
groups (three to four). Reverse/change roles after you have worked with the situation
for 5 minutes. After completing two versions of the role play, the participants should
discuss:
Role Play #1
Ms. Smith is a 42-year-old single mother with moderate COPD. She has been in and
out of the emergency room many times. However, this time, she is terrified as she is
more short of breath. She asks you, “People don’t die from this do they?”
How do you respond?
Role Play #2
Dr. Martha Rollin is a neurologist caring for Molly, a 21-year-old who has
Huntington’s chorea. Molly has had more difficulty speaking and moving. It has
become apparent to you and all other nursing and medical team members that
Molly is declining, and yet Dr. Rollin has been reluctant to inform Molly, her fiancé,
or her parents of her prognosis. One of the other nurses shared in report that Dr.
Rollin once mentioned that Molly reminded her of her own granddaughter, and the
resident mentioned that Dr. Rollin told him that Molly was one of her longest-term
patients. The nursing staff has become increasingly frustrated as they feel Molly,
184 communication in palliative nursing
her fiancée, and her parents need to be informed of her status. Late this evening,
Dr. Rollin returns to the hospital for a new admission, and you decide this is a good
time to discuss Molly’s care with her.
How do you initiate the discussion?
Role Play #3
Valnezio Quartera is a 76-year-old man with heart failure, severe coronary artery
disease, and aortic stenosis. He is currently back in the hospital for dyspnea and chest
pain. His wife died one year ago from a myocardial infarction. As you, the critical care
nurse, enter the room to hang an IV diuretic, Mr. Quartera asks you, “Susie, you don’t
think I’m going to die do you?”
How do you respond?
Role Play #4
Paulo Rodriquez is a 49-year-old with a recurrent brain tumor currently hospitalized
after experiencing seizures. Paulo was diagnosed at age 44 and has had extensive sur-
gery, chemotherapy, and radiation therapy. Three months ago, the brain tumor team
advised Paulo and his family that there were no further treatment options, at which
time his family took him to Mexico where he has had numerous herbal therapies and
traditional folk remedies. He has experienced weight loss, increasingly severe head-
aches, nausea, and now seizures. Following a severe seizure last week, his girlfriend
brought him back to the emergency room for care. As you wait with Paulo for a scan,
he tells you he is so tired of treatment and being taken far away and just wishes his girl-
friend and children would “give up and just let me be at home so I can play with my
dog and be with my friends.”
How do you respond?
Exercise Source
ELNEC Critical Care Training Program. (2010). Communication Module Six:
Supplemental Teaching Materials, Figure 5. Communication Role Play Scenarios. COH &
AACN. The End-of-Life Nursing Education Consortium (ELNEC) Project is a national
end-of-life educational program administered by City of Hope Medical Center (COH)
and the American Association of Colleges of Nursing (AACN), designed to enhance
palliative care in nursing. The ELNEC Project was originally funded by a grant from
the Robert Wood Johnson Foundation with additional support form funding organi-
zations (the National Cancer Institute, Aetna Foundation, Archstone Foundation, and
California Foundation).
185 Openings
Table 6.8 Suggestions for Communicating with Patients or Family Members with Limited
Understanding
• Double the consultation time if possible or schedule at a time in the day most likely to
provide the most time.
• Communicate directly with the challenged individual and then to a support person or
interpreter. Maintain nonverbals that are directed at the primary person in the interaction.
• Rearrange a question if the previous attempt garnered inconclusive or unproductive
results.
• Preview the contents of the consultation before it begins.
• Utilize additional aids (i.e., pictures, writing, symbols, etc.) and supports to increase the
health literacy level for the patient/family.
• Practicing a teachback approach might be helpful, in which the patient/family explains
back to the clinician what has been discussed or decided.
• Use language that is accessible to this person.
• Use events and places in conversation that the person will likely relate to and understand.
• The person in the consultation might have little understanding of a cause–effect dynamic
when it comes to his or her illness (e.g., continued smoking will make COPD worse).
Adapted from Tuffrey-Wijne, I., & McEnghill, L. (2008). Communication difficulties and intellec-
tual disability in end-of-life care. International Journal of Palliative Nursing, 14, 189–194.
Table 6.9 Potentially Helpful Things to Say During the Distressed Phone Call
Situation Communication
Adapted from Saunders, J. (2004). Handling unexpected distress on the telephone: The develop-
ment of interdisciplinary training. International Journal of Palliative Care Nursing, 10, 454–459.
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7
relating
Billy Green was a 4-year-old African American diagnosed with a brain tumor.
Over the next 3 years, he went through surgery, chemotherapy, and radiation,
and twice he experienced remissions of 10–12 months, during which time there
was hope for his long-term survival. Billy’s mother and maternal grandmother
were devout Baptists who believed in miracles, and despite each recurrence they
persisted in their faith for his recovery. Billy’s father voiced concern as he now
experienced yet another recurrence, this time the tumor causing seizures and
extensive neurological deficits.
Billy’s parents have been asked to meet with the pediatric oncology team to
make treatment decisions. His oncologist acknowledges that there are no further
traditional treatments available but does offer a new clinical trial. Mrs. Green
questions the physician about potential side effects, and the oncologist describes
possible side effects, which could include worsened seizures, hypertension, and
hemorrhage. Mr. Green then becomes very angry and emotional, announcing,
“I think it’s time you leave my boy alone. Enough!” Mrs. Green sobs but clutches
her Bible and begins to pray and chant. Billy’s grandmother comforts her daugh-
ter and son-in-law and assures both that Billy will pull through, saying, “God
isn’t going to take our boy.”
Billy’s grandmother cannot accept any outcome other than cure, at least at
this moment. Billy’s father wants to withdraw his son from curative medical
interventions and pain-inducing procedures, at least at this moment. Billy’s
mother is able to consider the impact of a clinical trial on his fragile quality
of life. Each of these three caregivers has a radically different way to engage
the news delivered to the family. What they all face is the decision of care for
Billy; what each needs is more conversation and communication that takes into
account who they are as people and as a family. This can happen if the relation-
ship between the clinician and the family/patient is prioritized.
This chapter presents relating as a strategy to advance patient and family understand-
ing. The surface of the spoken word is peeled back to consider what the action or force
of language might include. A complex architecture of goals is always at play, no matter
who is doing the speaking. Because the true motives and goals of a speaker are rarely
fully understood or realized, the recommendation in this chapter is to attend to the
187
188 communication in palliative nursing
relationship goal (sharing meaning) always, in order to facilitate the instrumental goals
(providing specific health care) of nursing. Throughout this portion of the book, there
is the opportunity to examine more closely the phenomenon of patient/family non/
acceptance of an illness status, as well as understanding patient/family perspectives on
adjusting to new information unfolding throughout a serious or terminal illness.
A set of theory-driven ideas from communication is brought together with nursing
research to ground this element of the COMFORT model. All of the concepts pre-
sented here create a mosaic of knowledge that demystifies misunderstandings, conflict,
and disconnection experienced between clinicians and patients/families during a time
in the illness trajectory when all of these parties feel the greatest need for support and
communication connection.
receiving it. Removing the clinician’s own response and opinion from the expected
communication outcome puts the “other” first. The idea of narrative nursing is under-
scored again here, and one of its central tenets is to accept that the end of the story is
not known, and that the outcome of the interaction is just as dependent on the patient
and family as it is on the clinician.
Observations of patient and family interaction with clinicians reveal that repetition,
redundancy, rejection, and selection are very present in the communication process
of absorbing illness status (Eggly et al., 2006; Wittenberg-Lyles, Goldsmith, Sanchez-
Reilly, Ragan, 2008). Additionally, there is a flawed conception among clinicians that
information central to decisions about care in illness will be clear to the patient and
family if it is presented as one focal piece of information. In fact, many patients/
families change the subject of a conversation topic during “bad news” discussions in
order to process concerns that they have, that are difficult for them, that are blocking
them from moving forward in their care. A singularity of topic is rarely experienced
in actual interactions, though that is commonly the preparation clinicians receive in
their curriculum.
Diversified approaches and responses to a subject can be referred to as the diffu-
sion of topic. For instance, consider Ben, a nurse from a palliative care team sent to
discuss plans of care with Maggie. The report Ben received from the attending physi-
cian was that Maggie was impossible to talk to and seemed to be on another planet in
terms of facing her care decisions. When Ben visited with Maggie about care options
as she faced the end of her life, Maggie was resistant and indicated many times that she
needed to get to a place “where her legs would work again.” After Ben realized he was
going down the same road as the attending physician, he stopped pressing Maggie to
do the care planning and listened to her. The investment in Maggie paid off quickly.
Ben learned that Maggie was responsible for the care of her adult autistic son and
his three dogs. She viewed these dogs as central to her son’s health and functioning.
Though Ben originally arrived at Maggie’s room with the intent to “make a plan” for
her, this central topic had to be diffused to address Maggie’s deep concern—which was
for her son, not herself.
A term that is infinitely useful in explaining patient or family acknowledgment of
changing health status is acceptability. To accept news or change is to acknowledge
that it is real and assent to that information in planning, behavior, and communi-
cation. Acceptability is arrived at with more ease if the patient/family is adapted to
first and foremost in terms of their experiences and needs. Patients and families
bring lifetimes of patterns and “baggage” into one of the most difficult chapters in
life—end of life.
Revisiting the opening pediatric case study, the grandmother could be a major fac-
tor in delaying acceptability, as Billy’s case becomes palliative and hospice appropriate.
Adjusting for these challenges can be so rewarding, especially when clinicians lay down
their own personal goals and checklists and invest in individual(s) with limited accept-
ability. Acceptability coincides with a shift in patient/family narrative from one that is
chaotic, or tightly grips the promise of restoration, to a narrative that looks ahead to
the possibilities presented through illness.
190 communication in palliative nursing
QUEST NARRATIVE
As palliative care is initiated, patients and families have a high degree of uncertainty
about the care-planning process. Many families report that they “have never done this
before” and are unsure about working with patients to provide care at home. This ambi-
guity leaves them searching for an alternative way of living with illness (Frank, 1995).
Since cure is no longer a viable outcome for their illness story, patients and families look
for other sources of meaning as a way of managing their uncertainty. The discovery
of something useful from the experience of illness is called a quest narrative (Frank,
1995). These are stories that illustrate patient/family acceptability and often include
acknowledgment of significant changes (both vocational and personal) following an
illness (Frank, 1995). Though Frank’s naming and observation of the quest narrative is
not empirically based, the authors suggest that this kind of narrative can be a useful goal
for nurses caring for patients and families facing serious and terminal illness.
As the illness story is told, the goal is to support patients and families as they work
toward rewriting a no-longer-useful story of cure. Three distinct phases comprise the quest
narrative and point to specific junctures in a patient/family member’s story identifying the
quest. In the first part of an illness story, symptoms are disregarded and refused, only to give
way to acknowledgment of the disease/illness. This acknowledgment signifies a threshold
that indicates a move toward acceptability (Frank, 1995). Next, there is a major turning
point in the illness story that is typically described (through metaphor) as a crisis or unsuc-
cessful treatment (e.g., surgery, chemotherapy, radiation). Following this critical turning
point (treatments have not been effective, a critical health/safety condition arises, or no
other treatment options exist), the patient/family gains awareness and realizes where they
are in the illness journey. Discovery is gained from the event or critical turning point and
brings a sense of identity related to the illness. Finally, changes as a result of the illness are
brought to the forefront of the patient/family’s character, and the lessons learned reveal
perseverance and the richness gained through suffering. Box 7.1 provides an example of a
patient’s perspective that is consonant with the quest narrative. The point of this chapter,
though, is to emphasize the role the nurse plays in making a narrative like the quest narra-
tive more likely and attainable. The quest narrative becomes more possible if the nurse uses
communication to intervene.
Box 7.1
“I have learned how much I love life and how precious it is . . . I have learned that no
matter what, the journey doesn’t have to be all about dark and dreariness and the end.”
—ALS patient
The nurse’s task is to enact communication skills that reduce uncertainty and reau-
thor the illness journey toward a quest narrative. By encouraging patients and family
members to reflect on the illness and its impact, the nurse can identify patient/family
sense making (why they believe this is happening, how they are interpreting changes),
191 Relating
allow them to assert control over their story, point out prior decisions and results,
establish a sense of community with the patient/family, and distinguish new identities
(Sharf & Vanderford, 2003). Nurses need to assess acceptability and adapt communi-
cation accordingly.
Patients and families are often inclined to share their story as a way of acclimating to
new staff. It is during this first storytelling that nurses can begin to decipher acceptabil-
ity. Take, for example, the first-time meeting between a hospice nurse and the mother
of a 29-year-old woman who has been referred to hospice. The referral sheet shows that
this young patient had a kidney transplant at age 7. The kidney failed approximately
14 years later. For the last 8 years, the patient has been on dialysis and has had three
strokes, and she has been bedbound with a feeding tube for over a year. Her mother
recalls the events leading up to this initial hospice visit as illustrated in Figure 7.1a.
“We are down to our last location for dialysis. Two weeks ago she came down with a rare form
of e-coli and had a temperature of 103 for three days. And because she’s hypotensive, they had to
put her on IVs and antibiotics and several heart medicines. Her hands and feet turned black. Now
she’s off and her hands are pink . . . She has been at home with us and has been able to walk and
move. She has limited vision and now her vision is totally gone. She has incredible joint pain. It’s
not going to get any better. We can take her some place, like long term care, but I don’t know what
good it will do. She’s very susceptible to infection. It’s time . . . ”
“Yes, Karen had an infection in her catheter. She’s been on dialysis for 8 years.
She was born with this. She knows. Last year she had an ulcer
in her esophagus, it eroded and she had a stroke. She was in the Acknowledges disease and its
hospital from July through January . . . My head has already progression.
made the decision, but my heart is just breaking. You (hospice)
have been recommended from folks who have used you – they (hospital) would
like her gone today.”
Nurse begins to discuss hospice philosophy, focusing on time frame to death once dialysis
is stopped.
Nurse: “Of course, she doesn’t want to die and no mother ever wants
to have a daughter die. In hospice we have cared for many families Nurse attempts to identify
whose circumstances are very much like yours. We fi nd that even meaningfulness in the
illness story, shifting this
in these very difficult circumstances, patients and families do best
toward a quest narrative.
when they can openly talk about what is happening now at the end
of life, say goodbye and to let each other know how much you love
each other. You said a few minutes ago that “It’s time . . . ”. It seems like you really are
aware that your daughter has only a few weeks of life remaining. Can we talk about how
we can best support you and Karen in the days ahead?”
figure 7.1‘ ! Illustration
192 communication in palliative nursing
In this case, a family meeting is held to determine plans and place of care for a 58-year old male.
The wife is under suspicion of attempted murder of the patient, her husband. He has been shot
from the rear twice within two months. As a result of this second shooting, the patient has been
wounded in the back and lung. He is unconscious, and will not recover.
If the wife goes to jail, she loses all rights to make decisions therefore decision-making would
transfer to the patient’s five children, of which only one son has kept in regular contact with the
patient.
The wife of the patient and her brother are present for the family meeting. Health professionals
present include a nurse, social worker, resident (R), and attending physician (AP).
[Brother says to wife:] Tell them the truth, nothing but the truth, or they can’t help him. *
Wife: You should know my husband is an ex-felon. [she discusses past experiences of gunshots
produced by dying husband].*
→ AP: [talks about the patient’s care and where the patient has been and what the healthcare
team has been doing]. He’s barely responding to any stimuli. He’s not communicating.
Wife: Why are there so many changes in his condition?
Resident: [explains gunshot wound impacts many physical systems which means the patient
is at risk for many complications—though the man is stable currently.]
Brother: Well, the other doctors have said to look into long-term care.
AP: Let’s talk about that. First, he’s not a candidate for rehabilitation because he cannot
communicate. The next choice is long term care and that’s probably what will happen.
He needs constant 24-hour supervision for care.
RN: Has he ever talked about what he would want if he was in a condition like this?
Brother: We’ll yes he said put me in my favorite car and drive me off a cliff.
RN: Well yes that comment is helpful. Did you share any other talks?
Wife: [explains that the patient has changed his mind many times about end-of-life
extension– and she gives examples]
Brother: He’s been addicted to many different drugs, pain medication, and stuff.
Wife: [talks about life troubles and being thankful for her brother]
Brother: Is he conscious?
RN: [explains that he doesn’t have consciousness]. He doesn’t have the capacity to make
decisions.*
Resident: I agree.
RN: It’s about following the patient’s wishes. What do you think he wanted?
Wife: [breaks down crying] I don’t know.
Brother: [holding sister’s hand] [says to healthcare team] I’m sorry, but she can’t handle this.
She’s never been able to [talks about patient]
[RN explains code status is about resuscitating him if his heart stops.]
The wife and her brother do not make a decision about code status and meeting is concluded.
PROBLEMATIC INTEGRATION
Changing probabilities about the disease and changing values about acceptable quality
of life create uncertainty for the patient and family; nurse communication is necessary
to facilitate discussions about uncertainty and shift toward a quest narrative. With
multiple parties involved in a patient’s plan of care, including nurses, numerous physi-
cians and specialists, and a range of family members and family involvement as well as
194 communication in palliative nursing
other health care providers, there are large variances of communication ranging from
open, to limited, to none.
As a result, a collective dilemma exists when communication becomes nonex-
istent or limited, and life-prolonging treatment continues as a means to managing
uncertainty about a prognosis (Hines, Babrow, Badzek, & Moss, 2001). Finding the
courage and resources to start a conversation with patients and families about how to
manage new information, make sense of ambiguous communication about progno-
sis, and initiate information seeking depends on how uncertainty is managed (Step &
Ray, 2011). Problematic integration theory explains how patients/families attempt to
manage uncertainty (Babrow, 1992; Babrow & Mattson, 2003). It includes two compo-
nents used in producing and coping with uncertainty: probability, the likeliness of the
event/issue occurring, and evaluation, an assessment of the goodness of the outcome.
Uncertainty results from the problematic integration of the way a person feels about
something (positive or negative emotional value) and their perceived probability that
something will occur.
When probability and evaluation do not complement one another, then commu-
nication and decision making become difficult. Nurses must be careful to assess the
patient/family’s acceptability and recognize that the same information needed to make
informed decisions will also facilitate their coping (Hines et al., 2001). One of four
things can happen when there is no consistency between what we value and what we
think will occur. Table 7.1 provides an overview.
Ultimately, communication is often the source of problematic integration as well
as a resource for coping. Communication and decision making are easier when prob-
ability and evaluation judgments merge. But the uncertainty of illness leaves patients/
families asking difficult questions that clinicians, many times, cannot answer to the
satisfaction of the patient or family. Nurses are often asked:
The following examples illustrate uncertainty in various forms (the four types of
problematic integration) and include attention arrows (→) to signal cues or prompts
produced by nurses to help patients/families navigate uncertainty.
nurse: You were too sleepy yesterday to go home. I know it is scary to go home,
but we will be sending the nurses to your home to check on you there. And
I bet you will be glad to be in your own house again. Who will be at home
to help care for you?
patient: My daughter.
nurse: Well, I know she came up here last night and your daughter wanted to
take you, but they couldn’t get you awake. Do you remember that?
patient: Oh, yeah.
nurse: They will be back today.
For this patient, there is a discrepancy between what he wants (to stay at the hospice
inpatient facility) and what is likely (he will go home with his daughter). The nurse
focuses the patient’s communication on upcoming interactions that will clarify what
the patient wants, in order to move the patient to acceptability.
nurse: I’m glad she’s perked up, too. We need to be cautious, though, in
thinking about her getting better. Sometimes people “rally”—meaning
they are very sick but then they perk up. I wanted to let you know that
we are also very pleased since she is really enjoying today and especially
your visit.
sister of patient: Yesterday we thought she was leaving, but today I don’t.
→nurse: Overall, while this is a good day for her; unfortunately, we know
that her body is getting much worse. Her kidneys are failing and her heart
is also much weaker. It’s very hard for loving families to have this “roller
coaster” of ups and downs. We want to really seize days like today to enjoy
while also preparing for what is to come.
In this instance, the sister of a patient focuses on aspects of health care that involve a
move toward recovery or cure. The nurse uses ambiguity here to remind this woman
that her sister’s rally is joyful, but she also communicates that the patient is moving
closer to death rather than farther from it. By using the dissonance in the sister’s state-
ments, the nurse is able to reiterate that her sister is still dying despite changes in her
affect and interaction. It would have been the less complicated path to simply allow
this family member to remain in a state of hope about a revival, but this nurse has the
wisdom to move the sister toward a clearer understanding of her loved one’s illness
trajectory.
Although this husband is ambivalent about this wife’s condition in that he is pre-
sented with two equally difficult choices, the nurse quickly identifies that more
communication and family interaction would be a helpful first step in determin-
ing what really matters for this family. By providing some specific directions and a
timeline (2 hours), this nurse is able to prioritize the husband’s planning and pro-
vide direction for moving forward.
197 Relating
Readily seeing the difficulty this patient faces in understanding a shift toward active
dying, the nurse begins with a small step/plan that she shares with the patient to a
focus on her priority concern of her daughter. Sharing an understanding with the
patient about her concern and offering a next step in addressing the primary concern
is an effective way to move patients/families who seem stuck in their thinking or action
about care planning.
Problematic integration invites clinicians to recognize indicators of low acceptabil-
ity from patients and families as they grapple with their end-of-life challenges. Each of
the arrows noted in the above exemplars correlates with relational concerns/content
for these patients/family members. These interactions demonstrate the forces present
in conversations and recognize a patient or family member’s relationships and the role
relationships play in decision making. Relationship is core to the patient/family and
can serve to connect nurses with always-salient issues at end of life. Searching for addi-
tional cues from talk can be achieved by applying an idea called speech act theory. This
concept enlightens the work of identifying acceptability by also considering what is
actually being said (and done) when words are spoken.
much more than their words encode. It is this series of complications that is addressed
in speech act theory, and the intention here is to connect the knowledge of these ideas
to the practice of palliative care nursing.
Speech act theory clarifies that words are often received in a way not intended by
the sender; this is true for a patient, family member, or clinician in the context of life-
limiting illness. Despite assessing, planning, and intervening with communication, the
patient and family bring elements to the experience of care that no clinician or team
can guess or control.
J. L. Austin (1962) claims that producing an utterance is also the performance of an
action. Searle (1969) further extrapolated on Austin’s foundation by arguing that con-
text shapes acts of speech. Austin establishes three very distinct classes of action that
are happening when we talk. Put simply, he identifies the act of saying something, what
a person is doing in saying it, and the effects of the saying.
Austin names these three levels with their own unique terms. The meaning of an
utterance itself is referred to as the locutionary act (the act of saying something). The
illocutionary speech act (what a person is doing in saying it) performs its deed at the
moment of utterance. This level of action in speech demonstrates a contextual func-
tion. A speech act produces a force and in action does something simply by being stated
(e.g., describing, answering, identifying). Perlocutionary acts (the effects of the saying)
cause a secondary effect on the listener following the illocutionary act that often can-
not be predicted (Austin, 1962). Rules and requirements necessary for certain acts of
speech and their illocutionary and perlocutionary properties are the essence of speech
act theory. Perlocutionary acts are infinite and unpredictable, and are fully subjective
depending on the speaker, listener, relationship, and context (Butler, 1997). Refer here
to the third category in Table 7.2 in which the news of the test result will have effects.
Adapted from Austin, J. L. (1962). How to Do Things With Words. Oxford, UK: Oxford University Press.
199 Relating
Speech act theorists showcase the sequence of interaction and have exhaustively
established rubrics and flowcharts to demonstrate the connection between one speech
act and the next (Table 7.2).
Butler (1997) thinks of speech acts as interpolations of the very same utterances that
came before and will come after. She places force and rich meaning in the historicity of
utterances and their previous uses and contexts. This is a powerful concept in nursing,
as many subjects for patients and families are reified by the nurse after having been ini-
tially but too minimally addressed by a physician or other health professional.
Following a terminal diagnosis delivered by a physician, curative treatment thera-
pies are often the primary point of discussion and decision making for patients and
families (The, 2004). If a diagnosis of Stage IV pancreatic cancer is shared, followed by
a discussion of chemotherapeutic choices while prognosis talk is evaded, the physician
and the patient/family bypass the larger matter of goals of care in the life remain-
ing. Butler (1997) calls this phenomenon constraint. “The effort of constraining a
term or phrase culminates in its very proliferation—an unintended rhetorical effect”
(p. 131). In not discussing something, or using language that is threatening; the thing
itself is discussed, remade, proliferated, and enlarged. The nurse is often the partner
with whom constrained topics can be engaged.
or action of his or her speech can carry more than one meaning. For example, “Have
we fed the dog today?” not only has the illocutionary force of finding out whether or
not the dog has been fed this day, but also whether or not the receiver of the question
could/would feed the dog.
The chart below (Table 7.3) describes the four major categories of illocutionary acts
(what someone does in saying something) (Back & Harish, 1979). Examine the direct
speech act assigned to each of these four categories, and the possible indirect speech
acts that could be produced. This should begin to help in identifying multiple actions
that are carried out within most human speech communications.
Speech act categories adapted from Austin, J. L. (1962). How to Do Things With Words. Oxford, UK:
Oxford University Press.
202 communication in palliative nursing
This exchange took place between a registered nurse and an in-patient hospice patient.
RN: Mr. X, you okay? You sleepy today?
Pt: Yes. Have you seen [wife’s name]?
RN: No, [wife’s name] passed away in April. You were here.
She died peacefully. *
The RN described how the patient’s dementia caused him to relive the realization
of his spouse’s death three to four times a day. He would call his daughters at home
and ask for his wife. A large sign was eventually placed on the wall of his room that
said “[patient wife’s name] died on [month, day].” When this RN was asked how he
handled this over and over again, he said: “You let him know that she has passed away
and then try to refocus his attention. The chaplain and I actually take turns handling
it because it drains you to do that 3–4 times a day . . . I can’t imagine what it does to
him.” This passage of talk displays the importance of the patient/clinician relation-
ship goals, while task goals such as checking for pain control and blood pressure are
also pursued.
The type of problematic integration this demented patient communicates is
ambivalence—in which two contradictory realities are constantly at odds (his wife
is alive/his wife is dead). His dementia moves him several times a day between two
204 communication in palliative nursing
realities; one in which his wife is there but out of reach, and one in which he learns
his wife is dead. These two places of awareness are the primary trauma and concern
for this patient. In the interaction above, the RN has a keen understanding of this
patient issue and readily orients to the very point of ambivalence for this man.
ASSESS
What Billy and his family were actually revealing about their ability to process updates
about disease progression could have been identified in their communication with
family and clinicians. From the case study, it is possible to ascertain that Billy’s mother
and grandmother are steadfast in thinking that dying is an impossibility if they rely on
their faith. Billy’s father, of course, wants his son to live and recover but has indicated
concern over the aggressive treatments on more than one occasion. Within this one
family, at least two types of problematic integration are observable (divergence: father,
impossibility: mother/grandmother).
The four pillars of problematic integration (divergence, ambiguity, ambivalence,
and impossibility) are identifiable in patient and family communication. Simply being
aware of types of problematic integration can move the nurse clinician in the direction
of improved communication. Patients and families attempt to manage uncertainty
when what they want (restoration/cure) is not likely to happen, and they perceive a
declining status. For some, engaging in communication strategies that suppress, sus-
tain, or even increase uncertainty indicates that very important matters at this point in
life are not being addressed (Sharf, Stelljes, & Gordon, 2005).
As described in this chapter, direct and indirect speech acts provide clinicians with
a greater understanding of what actions are being expressed in communicative behav-
iors, and as a result offer potential ways in which clinicians can connect relationally
with patients/families. Assess for red-flag rationalizations in patient/family decision
making that signify a need for more clinician connection in order to move through the
illness process and better care for those suffering. Table 7.4 identifies rationalizations
and definitions, example statements that might serve as vehicles for these rational-
izations and their definitions, and the four areas of problematic integration—one of
which will resonate most strongly with a particular rationalization.
Table 7.4 Rationalizations in Decision Making
Rationale Definition Example/Circumstance of This Rationalization Problematic-Integration Type Indicated
Self-efficacy Emphasizes patients’/families’ own internal I am really focusing on my strong cells and sending them x Impossibility: When an individual
controls, abilities to influence their own the best energy I can. This can change the whole prognosis feels absolutely certain of an event or
health outcomes for me. outcome
Minimizing Statements minimizing risk factors, We can get through this, no problem. Cancer is not a death x Ambiguity: When the probability of an
threat possibility of prognosis, severity of illnesssentence anymore; you just get it fixed. event is unknown or uncertain
Fatalism Emphasizes the importance of powers that The outcome here is already written. We just have to trust x Divergence: Discrepancy between what
and faith outweigh self-control, i.e., fate or God in all the technology and try everything. God gave us this we would like and what is likely
technology.
Distrust Suspicion of health information, medical They are after the money with these treatments. How can x Impossibility: When an individual
procedures, motives of staff I even know if I need these if everyone is motivated by how feels absolutely certain of an event or
much they can make off of me? outcome
Desire for Requests for information or complains I would feel better if we could get a third opinion on this. x Divergence: Discrepancy between what
information about not having enough Neither clinic has been very forthcoming about the side we would like and what is likely
effects I read about.
Living with The capacity, or even desire, to live without I am not interested in finding out what is going on. I have x Divergence: Discrepancy between what
uncertainty knowing one’s diagnosis lived with this for 3 years and so far so good. we would like and what is likely
Futility Denies or questions utility of treatment or They can’t do anything for me. I have tried a specialist x Impossibility: When an individual
procedure already. I know how to take care of this on my own. feels absolutely certain of an event or
outcome
Postponing Puts off having treatment without I guess I am not interested in moving forward with these x Divergence:
refusing, delays medical treatment after diagnostics. We know things are not good, and I think I Discrepancy between what we would like
self-recognition of symptoms need to think about this a while. and what is likely
(continued)
Table 7.4 (continued)
Rationale Definition Example/Circumstance of This Rationalization Problematic-Integration Type Indicated
Physical Concern for pain or discomfort caused I can’t go through the PET scan. I just can’t face that again. x Ambivalence: When two differing
discomfort by medical procedures, anticipated, I completely panicked about it the entire day before but I evaluations are present
experienced know I have to do this.
Will to live Emphasizes the power of self-determination I am not giving up. My kids need me, and I am determined x Ambivalence: When two differing
to survive this will not put me down. I know that my test results are evaluations are present
declining, but my team tells me to stay determined.
Adapted from Sharf, B., Stelljes, L., & Gordon, H. (2005). “A little bitty spot and I’m a big man”: Patients’ perspectives on refusing diagnosis or treatment for lung cancer.
Psycho-Oncology, 14, 636–646.
207 Relating
PLAN
Does Billy have a voice in his own illness and its progression/treatment? This is
unknown without more conversation to gain an understanding of this family’s qual-
ity of life across all domains. In designing a plan of care to increase acceptability and
understanding, the quality-of-life domains provide grounding in the aspects of life
that need attention (Ferrell, Dow, & Grant, 1995). Creating a plan of care using these
domains is also facilitated by an awareness of the narrative told by patient/family.
Frank’s (1995) three illness narratives serve to create a goal trajectory when pla-
nning to intervene with patients/families. The restitution narrative includes the
story of returning to the state of previous health. This narrative type can coincide
with overuse of curative therapies. The chaos narrative includes the story that no
one involved has control and every aspect of life is held hostage by contingencies.
The quest narrative has been described previously in this chapter, and stories ill-
ness (sometimes a new diagnosis and sometimes a new realization of a previous
diagnosis) as a new opportunity to live differently/better. The quest narrative does
Adapted from Brataas, H. V., & Thorsnes, S. L. (2009). Cancer nurses narrating after conversations
with cancer outpatients: How do nurses’ roles and patients’ perspectives appear in the nurses’ nar-
ratives? Scandinavian Journal of Caring Sciences, 23, 767–774. doi:10.1111/j.1471–6712.2008.00679.x
208 communication in palliative nursing
not include physical restoration as the focus but, rather, meaningful ways to con-
nect to others and what exists as important for that patient and family. Designing
a communication intervention for increased family acceptability will inherently
include a movement from either the restoration or chaos narrative toward the quest
narrative.
Bringing together the quality-of-life domains and Frank’s illness narrative allows
a nurse to get at the very domain(s) in need of conversation/communication. Figure
7.3 portrays patient/family movement to the quest narrative. This combination of
ideas also can showcase the very dissonant understandings that patients/families can
maintain as identities shift, family roles are strained, and losses multiply. In serious
and terminal illness, nothing will be the same. The restoration narrative stories the
return to a predisease body, the same relationships, same activities, and same capabili-
ties. But patient and family resistance to engaging a reality that adjusts for the phys-
ical, psychological, spiritual, and social costs of terminal illness is an indicator that
communication intervention is needed. Similarly, inability to move forward with any
planning out of fear and confusion (chaos narrative) can be present whether it occurs
in the domain of physical health decisions, psychological care, spiritual concerns, or
social well-being.
INTERVENE
The language and conversation needed to move patients and families to increased
understanding and acceptance are explicated throughout this chapter (problematic
integration, illness narratives, multiple goals, speech act). All of these approaches to
intervention position the messages of the patient and family as central in cuing nurse
clinicians about the most effective communication practice.
Restitution
Narrative
Quest
narrative
Chaos narrative
Used with permission from: Wittenberg-Lyles, Goldsmith, Sanchez-Reilly, & Ragan (2008).
Communicating a terminal prognosis in a palliative care setting: Deficiencies in current communi-
cation training protocols. Social Science & Medicine, 66, 2356–2365.
210 communication in palliative nursing
EVALUATE
The use of diaries in the clinical setting is rare and is typically assigned to clinical trial
tasking. As such, “diaries” are often highly sanitized of narrative and essentially serve
as a schedule of events and results. The first evaluation recommendation does enlist a
diary. However, in this particular evaluative effort, a daily account of a patient’s prog-
ress would be written in everyday language by nursing staff. This account might even
include simple drawings or photographs in some cases. The diary would be given to
the patient/family after discharge from the unit and would include a simple question-
naire with an area for comments about the diary as helpful and representative of the
experience they shared with their nurses.
In a previous study that analyzed this evaluative tool, the results showed that half
of the diaries in the sample had been reread more than 10 times by family members/
patients. Nearly 70% of the questionnaire topics were graded as very positive or posi-
tive (Bäckman & Walther, 2001).
The limitations to such evaluations include time, money, and resources. But even
on a small scale, this can be a rich tool for study. A more feasible evaluative method
is to follow a case with a chart review and identify the conversations that took place,
with whom and when. Observe the presence or absence of communication charting.
Describe and then determine if communicative practice is central enough to be con-
sidered chartable at the institution doing the evaluating.
CHAPTER SUMMARY
This chapter presents relating as one dominant strategy to advance patient and family
understanding. The surface of the spoken word is peeled back to consider what the
action or force of language might include. A complex architecture of goals is always
at play, no matter who is doing the speaking. Because the true motives and goals of a
speaker are rarely fully understood or realized, the recommendation in this chapter is
to attend to the relationship goal always in order to facilitate the instrumental goals
of nursing. Throughout this section of the book, authors provide an opportunity to
examine the phenomenon of patient/family acceptance of an illness status, as well as
understanding patient/family perspectives on adjusting to new information unfolding
throughout a serious or terminal illness.
Talking and communicating in a way that is radically adaptive assume that the clini-
cian cannot know the reaction or perspective of the patient/family without first receiv-
ing it. Narrative nursing creates the opportunity to learn about dissonance between
desired outcomes and realities of illness. The idea of problematic integration addresses
this dissonance directly. Recognizing these particular challenges can move a patient/
family toward the quest narrative and away from the experience of chaos or denial—
both of which exacerbate feelings of dissonance.
Also explored in this chapter is a study of speech acts and multiple goals. Both of
these tool sets help clinicians reveal the difficulties and stumbling blocks that patients
and families face as they work to acknowledge their changing health and identity.
211 Relating
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Harter, L. M., Japp, P. M., & Beck, C. (Eds.). (2005). Narratives, Health, and Healing: Communication
Theory, Research, and Practice. Mahway, NJ: Lawrence Erlbaum Associates.
Holloway, I., & Wheeler, S. (2002). Qualitative Research in Nursing (2nd ed.). Malden, MA:
Blackwell Publishing.
Website: http://www.arthurwfrank.com/publications
Hines, S. C., Babrow, A. S., Badzek, L., & Moss, A. (2001). From coping with life to coping
with death: Problematic integration for the seriously ill elderly. Health Communication,
13, 327–342.
Parrott, R., Silk, K., Weiner, J., Condit, C., Harris, T., & Bernhardt, J. (2004). Deriving lay
models of uncertainty about genes’ role in illness causation to guide communication about
human genetics. Journal of Communication, 54, 105–122.
Additional References for Speech Act Theory and Multiple Goals Theory
Ragan, S. (1990). Verbal play and multiple goals in the gynecological exam interaction. Journal
of Language and Social Psychology, 9, 67–84.
Searle, J. (1969). Speech Acts: An Essay in the Philosophy of Language. Cambridge, UK:
Cambridge University Press.
Tracy, K. (1984). The effect of multiple goals on conversational relevance and topic shift.
Communication Monographs, 51, 274–287.
Tracy, K. (1995). Action-implicative discourse analysis. Journal of Language and Social
Psychology, 14, 195–216.
DISCUSSION QUESTIONS
Passage One:
When there is an illness like that, the worst thing you can do is not talk about
it. Your kids are left to draw their own conclusions, and it scares the hell out of
them. We never talked about it in my family. Never. When you are young, you
want to know what’s going on, but nobody would tell us. We were just left out
a lot. You never did get that sense that “Everything is okay.” It was always pins
and needles. It’s one thing to think it, but to have an adult say, “Everything is
okay right now, this is what’s going on . . . ” that calming factor never did come
in. You’re a kid. Your mind wanders. You worry about things. Your own health is
jeopardized, if you’re focused on him (brother) and you don’t pay attention to
yourself.
Used with permission from: McGurk, M. (2006). A Lion in the House: Five Families.
Six Years. True Stories from the War on Cancer. Wilmington, OH: Orange Frazier Press.
Chapter One, Justin Ashcraft, p. 15.
Passage Two:
My mother was diagnosed in February 2009 with an unknown primary. She had a
malignant pericardial effusion and almost died. When she was diagnosed she was
told she had a few months to live and make her final arrangements. Her oncologist
gave her no hope.
My mom was devastated by the news initially. We decided she should have a
second diagnosis. The second diagnosis confirmed the original diagnosis.
Even though my mom was devastated by this she decided she would fight. My
mom is a very strong woman and has never complained about any medical prob-
lems at all.
The oncologist believed that chemotherapy would only be a palliative measure
and that she would not go into remission and that she would not be cured. I con-
tacted Dr. XXXX who verified her chemo treatments were right on track.
214
215 Relating
My mom has surprised everyone!!! In June of 2009 the oncologist told her she
was in remission and she has been in remission now for 9 months. I believe her
oncologist is even amazed at her being in remission.
I have heard many, many sad stories about ACUP diagnosis. However, I have
also heard some very good stories about people living for many years with an
ACUP diagnosis. I believe my mother will be one of those good stories.
■ “I feel I needed to talk and maybe cry a little and needed his [husband] shoulder to do
so with. But was denied, this hurt me and again I felt isolated. Now that is all behind
me. Everyone acts as though nothing ever happened. I still feel the need to speak
about it but feel I have no one to talk to about it. I am not the same person.”—Lung
cancer patient in remission
■ “My mother flat out told me she would not talk about anything about the cancer. She
is too scared. . . . It is awful . . . She told me to grow up and I had to make my own deci-
sions and take responsibility for my treatment and she wouldn’t discuss my cancer
with me.”—Breast cancer patient
216 communication in palliative nursing
1. Cast the roles of the nurse and the patient and “perform” them.
2. Examine the dialogue in discussion form.
3. What seems to be the primary challenge for the nurse/patient in processing
information?
4. Identify what the nurse is expressing directly and indirectly.
5. Identify what action the patient/family is expressing directly and indirectly.
6. What recommendations can be made about an improvement in radical adaptivity
for nurse communication in each interaction?
Interaction One:
nurse: From now on your cancer will be with you. It is a kind of cancer that
has no cure at this point.
patient: Well, they haven’t actually said that.
nurse: It is not curable. [Silence]. But it is a slow cancer. And what we are
really most concerned about is your pain. Are you in pain?
patient: No. I’m fine.
nurse: Have you heard of hospice?
patient: Yes, it’s for your dying days.
nurse: Well, actually it’s for people with advanced disease. You have an
advanced disease.
patient: God, you are an optimist. I have been totally fine.
[silence]
217 Relating
patient: But I want to go home. A couple of days in hospice might be okay, but
then I want to go home.
Interaction Two:
nurse: What did the doctor tell you about the tumor?
patient: Similar comments from this doc. It seems I am going to come out
of this.
nurse: It is hard to realize that your tumor is not going to go away.
patient: During the last operation they put a chemo disk in my brain to reduce
the size of the tumor.
nurse: But, the tumor itself will not go away. So we need to figure out how
we can help you be the most comfortable and pain free.
[patient stirs in bed, mumbling, showing distress]
nurse: What do you think about what I am saying?
patient: If you can monitor the tumor . . .
nurse: Right. Yes. To make sure you are not in pain or distress.
patient: The treatment I am receiving now, whatever prognosis you all make
up . . . but I don’t know one way or the other the best treatment now.
nurse: We will take care of you. Treat you. We especially want to address your
headaches. We just cannot cure you and make it go away.
phase of their relationship. Conversationally, it is clearly her turn to speak. She takes a
deep breath and produces, “Thank you.”
Jill and Kendall had conflicting relational goals. This is a pretty stark example that
is made clear by the speech exchanged at the close of their date. The relational goal
differences are not always so clearly evidenced and in the clinical setting can become
lost or overshadowed by the instrumental goals/tasks that need to be completed. Now
that multiple goals as a theory is refreshed, the frame is changed back from romance
to the nursing context. The following story is told by the young mother of a 2-year-old
boy born at 24 weeks. Abe and his family have faced the threat of his death countless
times in the 2 years of his life. His health is compromised by breathing, digestive, and
developmental difficulties.
Abe had gone in for a test to check the level of his acid reflux and see if he had sus-
tained any damage to his esophagus. The procedure was a routine one. He would
be mildly sedated, a probe would be inserted down his throat, and we would stay
in the hospital for 24 hours while it recorded every incident of reflux. . . . When
I went to meet Abe in the recovery room after the probe was inserted, I found
him terrified, hyperventilating, and vomiting profusely. The nurse taking care of
him had just started him on a heavy dose of morphine and oxygen through a
nasal cannula because “he couldn’t calm down.” I took him, spoke to him softly
to explain what was going on, and rocked him until he settled. When I questioned
the nurse about what had occurred, it immediately became clear to me that in
treating Abe in recovery, she had not taken into account that he has significant
visual impairment. While she was pulling off medical tape, adjusting an IV, and
moving him around, he felt attacked on all fronts because he did not know what
was happening to him. If the nurse had taken a few extra minutes to consider the
patient as a whole person—not just as someone there for a ph probe—she would
have noted that he is legally blind. It was on his chart, and anyone spending time
with him can quickly tell that he does not see very much at all. Speaking with the
family would have helped, too; the nurse could have asked how to approach Abe
so that he wouldn’t be scared and could have given the necessary treatment in a
way that would be less frightening and ultimately less invasive for him. We could
have avoided the morphine, the supplementary oxygen, and, most importantly, an
experience that terrorized my 2-year-old.
Read the story of Abe and the nurse in a small group. Discuss the following questions
together:
You come into a room to perform an intake interview with a patient new to this
care center. As you open the door to the room, you see a woman in her early 40s,
alone. She has been crying, and now tears begin to flow uncontrollably. She is una-
ble to speak and her body shakes from sobbing. What do you do?
Step One – The student recalls a memorable speech act delivered in the following
contexts/by the following people:
• A teacher (that the student knew in a student/teacher relationship)
• A spouse or parent (of the student)
• A clinician (when the student sought help as a patient or caregiver)
Step Two – The student divides a piece of paper into three sections and in each
section writes one of the three memorable utterances delivered by the teacher/
spouse or parent/clinician.
You are not honors material. Where did you learn to Let me show you a picture
cook? of normal.
Step Three – For each of the three utterances, the student should identify what the
indirect speech act(s) were that he or she understood based on the utterance. A
direct act unpacks the contents of what someone does in saying something. An
indirect act presents plausible additional actions exerted through the spoken
word—many of which are not controllable by the speaker. This is a useful
220 communication in palliative nursing
journaling project because the student will know the context of the memory and
the relationship dynamic shared or absent with the speaker described.
Step Four – For each of the three utterances, the students should identify what they
believed to be the goals of the speaker. What were their task goals? What were their
relational goals?
Step Five – For each of the three utterances, the student should identify what made
this utterance memorable for him or her.
This small speech analysis should give students some insight into the complicated
world of spoken communication and also the complicating variables that relational
goals impose on speech in a given context.
Example One
The husband of a patient says to the nurse as he enters the room, “I touched her and her arm
was cold, and I touched her face and it was cold. Do you think she’s alright?”
Please write your response ideas.
Example Two
A family and patient have just been admitted to the oncology floor. An exploratory sur-
gery revealed metastatic cancer. The family and patient are totally disoriented and have no
oncologist. The sister of the patient appeals to the RN: “Can’t someone just tell us what this
is and how we deal with it? We don’t even have a doctor yet.”
Please write your response ideas.
Example Three
A dialysis patient has gone to her NP as she is spiking a fever. Early in the appointment, the
patient says to the NP, “I don’t know why I am going through all of this.”
Example Four
A palliative care nurse meets with a family in critical care. The patient is in her 30s and has
late-stage Huntington’s disease and sepsis and is experiencing general organ failure. The
patient’s husband says to the nurse, “She is going to shake this thing. We’ve just gotta stay
positive as a family.”
Please write your response ideas.
Example Five
A pediatric oncology nurse stops in to deliver medication to Tim, a 4-year-old who is receiv-
ing a blood transfusion so that he can continue his chemotherapy in order to begin radiation
in 2 weeks. Despite his grave situation, Tim is cheery upon seeing his nurse. Tim’s mother
says to the nurse, “I wish his erstwhile father would get here and relieve me for once.”
Please write your response ideas.
Potential clinician barriers that will interfere with relating (understanding what is
spoken by patient/family):
(continued)
222 communication in palliative nursing
• Last words and last connections at the end of life for children require the extraordi-
nary support of speech language therapists (SLTs). The nurse can identify patients and
families in need of this specialized support early on and contribute to an SLP in prep-
aration for their work (voice banking, vocabulary selection, communication device
development) with a patient and family. Supporting children’s autonomy, their ques-
tions and literacy, and their own narratives about the illness experience will increase
patient and family quality of life.
1. SLP inclusion in pediatric care services provided as early as possible will support a
child’s changing communication potential and his/her continuity of care.
2. Engage the family and patient in the idea of an SLP and establish this support as
normative.
3. Encourage self-expression of patient.
4. Create opportunities in the day when SLP therapy would be most effective.
Concepts adapted from Costello, J. (2009). Last words, last connections: How augmentative com-
munication can support children facing end of life. The ASHA Leader, December 15, pp. 8–11.
• Three young people with cancer confront the day-to-day realities of coping with
the impact of the disease, with therapy, and with the attitudes of family, friends,
and coworkers.
Bognar, S., & Reichert, J. (2006). A Lion in the House. USA: Independent Lens. http://www.
lioninthehouse.com
• Five families struggle with the ups and downs of cancer treatment over the course
of 6 years.
Curtis, D., & National Film Board of Canada. (2003). Bearing Witness: Jocelyn Morton. Canada:
Fanlight. http://onf-nfb.gc.ca/eng/collection/film/?id=51157
223 Relating
• Follows sculptor Jocelyn Morton over the course of her last 4 months, as she copes
with her impending death from cancer
New England Cable News. (1997). Look for Me Here: 299 Days in the Life of Nora Lenihan.
Canada: Fanlight. http://www.fanlight.com/catalog/films/244_lfmh.php
• When she learns that her cancer has recurred and metastasized, 40-year-old Nora
chooses to forego radical treatment and face death with hospice care at home.
Focusing on the comfort provided by her caregivers, family, and support network
of family, friends, and coworkers, this portrait chronicles the year from that deci-
sion to her death.
Rabow, M., Goodman, S., & Folkman, S. (2008). The Caregivers. Open Eye Pictures, California.
http://openeyepictures.com/thecaregivers
Rabow, M., Goodman, S., & Folkman, S. (2008). The Caregivers Project Film Discussion Guide.
UCSF Osher Center for Integrative Medicine. http://www.osher.ucsf.edu/patient-care/
self-care-resources/caregivers/
• The Caregivers Project teamed with Open Eye Pictures, an award-winning, non-
profit production company to create The Caregivers, an educational film about
caregiving for loved ones with an aggressive form of brain cancer. The film fol-
lows patients, their family caregivers, and physicians-in-training to reveal the
complexities of caregiving, patient–doctor–caregiver communications, and the
health care system.
Watson-Burgess, H., & National Film Board of Canada. (2005). At My Mother’s Breast. Canada:
Fanlight. http://www.fanlight.com/catalog/films/435_ammb.php
• The filmmaker’s mother, grandmother, and great grandmother all had breast can-
cer. So have two of her three aunts. The result of this work is a portrait of strong
women in one family system who find unity and peace while facing a terrifying and
tragic genetic legacy.
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8
team
Difficult cases such as the Lindsey family can make communicating with colleagues
challenging. Conflict can arise when team members are protective of their area of
expertise and specialized contribution to the team, or because team members simply
disagree about how best to assist patients and families. Commitment to collaboration,
role-modeling collaboration, and creating a sense of community are necessary skills
for nurses working in teams (Huston, 2008). The focus of this chapter is team com-
munication and being able to communicate effectively with colleagues, even when
225
226 communication in palliative nursing
disagreement is prevalent. This chapter will detail the main principles of interdisci-
plinary collaboration, feature team meetings as a place to resolve conflict, and identify
common team communication problems that can lead to an ineffective decision-
making process called groupthink.
INTERDISCIPLINARY TEAMS
In an interdisciplinary team, clinicians work from different orientations while at the
same time engaging in joint work. Team members representing varying disciplines
within the biopsychosocial model (traditionally, physicians, nurses, social workers,
volunteers, and chaplains) are represented on the hospice/palliative care team to
produce family-focused care (Connor, Egan, Kwilosz, Larson, & Reese, 2002). Team
members need to collaborate, integrate specialized knowledge into a comprehen-
sive plan of care, and translate discipline-specific jargon for each other (D’Amour,
Ferrada-Videla, San Martin Rodriguez, & Beaulieu, 2005). Each team member holds
expertise, and leadership is influenced by the needs of the patient, family, and some-
times the team (Youngwerth & Twaddle, 2011). Ideally, under this holistic interdis-
ciplinary approach patients and families are provided with care plans that have been
assessed by experts in different disciplines (Dyeson, 2005). The holistic nature of
hospice and palliative care necessitates that team members achieve interdisciplinary
collaboration. Collaboration is an evolving practice that takes focused communica-
tion work (D’Amour et al., 2005).
INTERDISCIPLINARY COLLABORATION
Interdisciplinary Collaboration is a dynamic communication process that relies
on sharing resources, mutual dependence between team members, and sharing and
respecting positions of power afforded by credibility or expertise (D’Amour et al.,
2005). Despite discipline-specific expertise, team members share the same task and
relational communication responsibilities discussed in Chapter 2. Task communica-
tion on the team includes educating each other about successes and failures on the job
and/or appropriate communication strategies for specific patients and family mem-
bers. Meanwhile, relational communication consists of providing support to team
members and sharing workplace stress.
The model of interdisciplinary collaboration best represents the theoretical frame-
work for the interdisciplinary approach to care (Bronstein, 2003). This model includes
a combination of multidisciplinary theory of collaboration, services integration, role
theory, and ecological systems theory (Bronstein, 2003). Based on the model, inter-
disciplinary collaboration consists of: (1) interdependence and flexibility, (2) newly
created professional activities, (3) collective ownership of goals, and (4) reflection on
process. Table 8.1 illustrates an interdisciplinary collaboration observation form.
Interdependence and flexibility are characterized by interaction among team
members in order to accomplish goals. For each patient/family plan of care, team
members take on varying roles and responsibilities. Team members are dependent
227 Team
Observation Comments
upon each other for information that determines their role within a patient’s plan of
care; each case requires team member flexibility in order to achieve care outcomes.
When spiritual needs are requested from a nurse, the nurse is able to manage spirit-
ual communication. Similarly, when a chaplain is asked opinions about pain medica-
tion use, she is able to reinforce pain education and dispel myths regarding addiction
or tolerance. Interdisciplinary team members are united by psychospiritual care, the
underlying care required to meet the needs of patients’/families’ personal labor with
terminal illness that often brings psychological suffering and spiritual realities (Grey,
1996). Psychospiritual care is complex and ambiguous and cannot be attended to best
by any one core team member.
Box 8.1
“A doctor came in and gave him an explanation that they couldn’t do any more chemo
[chemotherapy] on him. . . . The patient didn’t hear it, just didn’t hear it . . . because I was
the chaplain I said pretty much the same thing as the doctor said, but I think because
I was just a normal person . . . he could hear me.” —Palliative Care Chaplain
When information is shared among team members, newly created tasks and
responsibilities emerge and collaborative activities maximize each individual’s exper-
tise. Because team members are interdependent, sharing information with each other
leads to new tasks. Although each team member provides a special service, the team
must labor together to serve the patient and family (Grey, 1996). This can mean “doing
the job no one wants to do” on behalf of the team (O’Brien, Martin, Heyworth, &
Meyer, 2009). Collaboration requires team members to be accessible to other team
members—allowing ease and frequency of contact—so that team members can
develop mutual respect and trust (Petri, 2010).
Collaboration is produced through a collective ownership of goals as team mem-
bers have a shared responsibility for producing quality holistic care. Team members
are joined together by the experience of patients and families, collectively engaging
in the voice of the Lifeworld about disease and illness (see Chapter 4 for further
discussion) (Goldsmith, Wittenberg-Lyles, Rodriguez, & Sanchez-Reilly, 2010). In
hospice and palliative care, team members share the same view that the patient and
caregiver are an integral part of the team (D’Amour et al., 2005; Goldsmith et al.,
2010). While each discipline has its own goal of care, team members have a shared
common purpose (Katzenbach & Smith, 1993). Hospice/palliative care team mem-
bers consistently describe themselves as having high spiritual well-being, the ability
to self-actualize, and making a conscious effort to integrate spiritual beliefs into
their everyday work (Clark et al., 2007). Finally, team members can become aware of
the process of collaboration by engaging in a reflective process. By reviewing team
processes, such as plans of care, discharges, or a patient’s death, team members can
229 Team
evaluate their own collaborative process. Unfortunately, research has shown that
this is the lowest ranked aspect of collaboration among hospice and other health
care teams (Tubbs-Cooley et al., 2011; Wittenberg-Lyles, Parker Oliver, Demiris, &
Regehr, 2010) (see Box 8.2).
Collaboration is a dynamic, fluid process that transpires in daily palliative care work.
In addition to team collaboration, nurses must also collaborate with other clinicians
outside of hospice/palliative care. A typical patient visit to an Alzheimer’s Assisted Living
Facility by Lance, an RN at a local hospice, characterizes collaboration:
Upon arriving at the facility Lance is greeted at the door by Cindy, the Resident
Director, who immediately wants a private meeting. She pulls Lance into her private
office to discuss her dissatisfaction with hospice personnel. Even though Lance has
never met Cindy before, he is recognized as part of hospice staff and is interdepen-
dently related to the hospice team and agency. He must be flexible to answer all of
her questions related to the patient’s care as well as the agency’s policies regarding
patient care.
Cindy reports that the hospice medical director and licensed vocational nurse
(LVN) were there for a patient visit 2 days ago. During the visit, Sally, the unit charge
nurse, asked the hospice medical director if he would speak to the patient’s daughter
and tell her that the patient was declining. Sally felt that this would help the daugh-
ter develop realistic expectations for care in the assisted living facility. According to
Cindy, the hospice LVN called the patient’s daughter later that day and told her that
Sally asked the hospice medical director to give her a “reality check.” Consequently,
the daughter called the assisted living facility, asked for Sally, and “chewed her out
and chewed out all the staff.”
Upon hearing this, Lance was very apologetic about the circumstances. Cindy
reiterated that the hospice LVN and Sally are on the same team, and the LVN “went
behind our backs and got us in trouble.” Lance acknowledges that the LVN’s com-
munication was completely unprofessional and agrees that they are all united by
the collective goal of providing quality health care to this patient and comforting
his daughter. Cindy made it very clear to Lance that the hospice LVN was no longer
welcome at the facility, explaining: “If my charge nurse was inappropriate, then it
was your medical director’s responsibility to correct her.”
This impromptu meeting with Sally creates a new responsibility for Lance, who
must now contact the hospice medical director as well as the hospice LVN to report
on this meeting and then contact administration to change the LVN assignment for
this patient. Finally, Sally was asked to join this meeting; together the three of them
reflected on what had transpired and then established a shared communication plan
to convey to the patient’s daughter.
230 communication in palliative nursing
Interdisciplinary team (IDT) meetings are routinely held in hospice and pallia-
tive care to enable team members to practice interdisciplinary collaboration. The IDT
meeting facilitates communication that produces an interdisciplinary plan of care for
each patient. During the IDT meeting, teams form a single care plan wherein team
members share responsibilities and implement their part of the plan (Sabur, 2003).
Informal exchange of information between team members also happens prior to
and after meetings, in the hallways, over lunch, or in passing at the patient’s home
(Youngwerth & Twaddle, 2011). The example in Figure 8.1 demonstrates interdisci-
plinary collaboration in a team meeting format among a nurse (RN), medical director
(MD), social worker (SW), and Chaplain (C).
This team meeting discussion involves all team members—each member provides
information about the patient’s plan of care, and the patient’s family is addressed
within this discussion. Elements of interdisciplinary collaboration emerge from the
discussion among team members.
The collaborative process also includes conflict as part of interdisciplinary team
communication. Disagreements among team members include varying opinions
about difficult patients/families and misunderstandings/personality conflicts (Parker
Oliver & Peck, 2006; Wittenberg-Lyles, Oliver, Demiris, Baldwin, & Regehr, 2008). After
presenting a case report and summary to the team, nurses often provide their own
impressions about the patient and caregiver (Wittenberg-Lyles, Gee, Oliver, & Demiris,
2009). Troubled patients/families are discussed at greater length, and “atrocity stories”
are often relayed among team members to provide insight into patient/family living
circumstances or difficult cases (Li & Arber, 2006; Wittenberg-Lyles, 2005). Atrocity
stories are shared to recount the insensitive behavior of other clinical staff or patients/
family members. Team members are not always able to agree on a plan of care, and
a lack of understanding across disciplines can produce conflict as team members can
struggle with overlapping roles (Connor et al., 2002). These conflicts as well as others
can be managed during team meeting discussions if the team has a problem-solving
procedure in place (Parker Oliver & Peck, 2006; Wittenberg-Lyles, 2005).
GROUPTHINK
Although the goal for an interdisciplinary palliative care team is to achieve high-
performance group status, research shows that hospice and palliative care teams
more commonly perform as working groups that do not always achieve collabora-
tion (Baldwin, Wittenberg-Lyles, Parker Oliver, & Demiris, 2011; Bokhour, 2006;
Demiris, Washington, Doorenbos, Parker Oliver, & Wittenberg-Lyles, 2008; Demiris,
Washington, Parker Oliver, & Wittenberg-Lyles, 2008; Katzenbach & Smith, 1993;
Wittenberg Lyles, 2005; Wittenberg-Lyles, Gee, Oliver, & Demiris, 2009; Wittenberg-
Lyles, Parker Oliver, Demiris, Baldwin, & Regehr, 2009; Wittenberg-Lyles, Parker
Oliver, Demiris, & Cunningham, 2011). In a working group, members interact regu-
larly, share information, perspectives, and best practices, but there is no organizational
policy for how the team is evaluated as a whole, nor is there an assessment of the
productivity level of the team (Katzenbach & Smith, 1993). A study of hospice teams
231 Team
RN: [Patient’s name] is a 69 year old patient who resides at home. She has stage four ovarian
cancer. Her daughter Velma provides care. Louise (Nurse Case Manager) said yesterday she
saw her this week and she’s in bed more. She’s not getting up as often.
And her pain seems to be pretty well controlled. It’s hard to get ahold of Collective
them. Louise actually had to go back to their house for impromptu visits ownership
just because she can’t get ahold of them. You can try their cell phones— of goals –
they have those rechargeable cell phones. members of
MD: Could you agree to a time that the phone could be free so that you could the team share
call? common
RN: I don’t know. That’s a good idea. One of the problems that I know that problem and
[chaplain] has run into is he can’t get hold of anybody. attempt to
SW: We’ve made it known that we have questions and so I’ve called several problem solve.
times on several days for several weeks and nothing. I leave messages on
the track phones or the phones aren’t working.
RN: And then when they [other clinical staff] do leave messages, they will ask
them well did you get my message? And they’ll say they didn’t. So I don’t know if they’re not
checking their messages or if that part of their service isn’t working. I don’t know. The patient
sometimes complains of having numbness in her feet, and that kind of makes it hard for her
to walk. If she’s up, it’s usually always assisted with someone in the house. She does have a
walker, but lately she’s just been staying in bed most of the time. Her pain is well-controlled,
she even has a decrease in the dizziness she was having there for awhile, but then, she’s in bed
all the time—she probably doesn’t feel that dizzy, because she’s not
up as much.
SW: She needs a walker. Interdependence
RN: She has a walker and she does use it, but lately the daughter has had and flexibility –
to kind of get her up and kind of stand there and hands-on assist. SW suggests that
I’d say the daughter, she takes good care of her—making sure that the patient needs
she has food to eat, and she gets her up, but what happens is, . . . additional medical
[weekend nurse] says that when she was out there this week, she’s equipment
noticed that they’re not getting her up to go into the living room
where the TV is at.
MD: I think the lack of moving and not getting to what she wants is a concern.
RN: Right. And just the fact that if she wants to get up, they need to be
there for her.
C: Has anyone talked to her about a volunteer? Newly created
SW: I saw her on initial assessment and they are a real supportive task – Chaplain
family. There is just a lot of family visiting and the daughter’s doing identifies that a
well enough despite the intrusion of a lot of people. volunteer may be
C: I’ve been able to get the Catholic Church to get over there to give her appropriate/needed
sacraments and prayer. She was very thankful for that but she said we
could still come and visit.
RN: The biggest issue with her is the fear of her daughter having to
see her go through this, and I think you’ve [chaplain] probably
talked to her about these things, and nothing else—death doesn’t Reflective process –
seem to be an issue for her when she talks to me. More so, it’s that Psychosocial elements
Velma is going to have to see her go through all this stuff. And of care are discussed
Velma and I have talked about this this and she wouldn’t want to by the team
have it any other way.
C: I agree. I think Velma will be able to handle this.
SW: I’ll try to get there Monday, if I can get a hold of them.
RN: I’ll tell them you’ll try to call – you’ll try to call and talk to them Monday then.
found that hospice agencies do evaluate teams, but little is known about what they are
evaluating, whether or not the evaluation impacts or influences team processes, and
whether or not anything is done with this information to improve team collaboration
(Baldwin et al., 2011). Typically, team members are evaluated for individual perfor-
mance rather than team performance.
232 communication in palliative nursing
Collaboration doesn’t occur just because group members are placed in the same
room (D’Amour et al., 2005). Interpersonal and communication conflicts are
likely and can result in factions within the group and isolation of group members.
Poor decisions can be made when group members ignore each other’s conflicting
opinions or if the group doesn’t deal openly with disagreements. While meetings
are a safe place for members to share, collaborate, and be collegial, they are also a
venue for group communication that involves managing professional boundaries
and practicing conflict resolution (Arber, 2007). Thus, we move now from inter-
disciplinary teams to looking at palliative care nursing from a group communica-
tion perspective.
Although group commitment is high (goals are shared and identified) among
palliative care teams, research has found that group members in highly committed
groups are more likely to prioritize group cohesion rather than critical evaluation
of the group task (Youngwerth & Twaddle, 2011). In health care organizations,
there is a stronger relationship between strategic consensus (e.g., agreement on a
plan of care) and organizational commitment (how much an employee feels com-
mitted to the organization) rather than involvement and commitment (Carney,
2007). With organizational commitment more likely to predict consensus with
group members, there is greater likelihood that members aren’t as involved in
the collaborative decision-making process (Carney, 2007). Groupthink can occur
when “deeply involved” cohesive group members engage in a mode of thinking
that centers on unanimity over the motivation to rationally assess various courses
of action (Janis, 1982). In these groups, the focus of groupwork is on group cohe-
sion and group relations rather than decision making; groupthink results in poor
decision making and/or lack of collaboration.
Clinical palliative care work in the team environment requires nurses to be
aware of the communicative elements that can lead to groupthink. Group cohesion
may be the result of the group’s inability to engage in effective group discussion
and conflict resolution. Groupthink occurs when there is pressure on group mem-
bers to agree not to disagree (Napier & Gershenfeld, 1999). This pressure emerges
informally through the culture of the group. Group members embrace a decision
even though they recognize it may not be the best decision. Disagreements among
members are suppressed, giving way to the perception that conflict means more
work for the group (Heinemann, Farrell, & Schmitt, 1994). When groupthink
occurs, members are unable to consider all aspects of information and alternative
solutions, and fail to understand the risk of failure (Heinemann et al., 1994) (see
Box 8.3).
Box 8.3
“Contrary to the notion that teams waste time and energy arguing, those that avoid con-
flict actually doom themselves to revisiting issues again and again without resolution.”
(Lencioni, 2002, p. 202)
233 Team
rn-1: He’s declining, he’s very weak, he staggers and he’s fallen once. He is con-
fused a lot of the time. He’s had chest pain. Sunday he had chest pain that
required three nitros, some oral morphine, and then two more nitros to
relieve the pain. Daughter is very understanding. She provides excellent
care and support to him. She’s real sweet.
rn-2: Is the daughter in the home?
rn-1: Yeah, they live together. First she took care of her mother, now she’s taking
care of him. She told me yesterday she is a breast cancer survivor and now
had uterine cancer. Now her father’s dying. She had gotten obese during all
(continued)
234 communication in palliative nursing
of this. She’s lost almost seventy pounds with Weight Watchers® and said
she feels better now than she’s felt in many, many years. I guess with all her
health issues she started gaining a lot of weight. Health issues and caregiv-
ing issues, she gained lots and lots of weight, so she’s looking really good
and she’s feeling really good about herself, and providing really good care
for him and, and he seems to be accepting everything. I asked him if there’s
anything I could do and he said, “Well, if you could make me about 25 years
younger I’d be fine.”
r-2: Is he the one that has the girlfriend that comes there?
rn-1: No, that’s a different patient.
rn-1: Okay. Chaplain, the social worker, everybody?
(Nods of agreement)
rn: He’s starting MSIR, and maybe [medication]. You might check the chart. I can’t
remember if it was there prior to. I think we started [medication] also.
While the discussion of this patient’s plan of care did include information about
pain, pain medication, and the caregiver, the only member of the hospice team to con-
tribute to this discussion was the hospice nurse case manager. The remaining team
members, specifically the medical director, social worker, and chaplain, decided not
to share information. Self-censorship occurred when these team members nodded in
agreement and allowed the discussion about this patient’s plan of care to end. In hos-
pice, nurses often find themselves responsible for presenting patient cases, and it is
important to recognize when groupthink is occurring and work to create an environ-
ment where everyone can contribute knowledge and expertise.
In addition to group cohesion, the structure of hospice and hospital systems can
contribute to the propensity for groupthink to occur in hospice and palliative care
(Degnin, 2009). Structural characteristics are the direct result of the organizational
process that contributes to the development and maintenance of interdisciplinary
teams. Structural constraints that influence group cohesion and the ability to collabo-
rate include manageable caseloads, an organizational culture that supports and encour-
ages interdisciplinary collaboration, administrative support, professional autonomy,
and the time and space for collaboration to occur (Bronstein, 2003; Youngwerth &
Twaddle, 2011). Structural constraints produce direct pressure on dissenters, an
inherent force that pressures group members to behave and think in similar ways
(Miller, 2009). When caseloads become unmanageable, there are concerns about time,
and/or group members do not have solid information-sharing procedures in place,
the effectiveness of communication in IDT meetings can be decreased by challenges
to information flow, including access to and recording of information, documenta-
tion of services, obtaining information from absent team members, data redundancy,
and updating of recorded information (Demiris, Washington, Doorenbos, et al., 2008;
Demiris, Washington, Parker Oliver, et al., 2008). As such, the ability to engage in
235 Team
Assessment
The team environment needs to be assessed for infrastructure that enables interdisci-
plinary collaboration and for any signs that groupthink behavior may be the norm.
Take into consideration the following elements that influence the team’s ability to
develop interdisciplinary care plans (Bronstein, 2003) (Box 8.5):
Box 8.5
¾ Professional Roles
o Is there a defined hierarchy within the team structure? How is this communicated?
o Do all team members sit at the table, or are some team members sitting outside
of the group?
(continued)
236 communication in palliative nursing
✓ CHECKLIST
(continued)
237 Team
Does the team fail to tap into all the opinions and perspectives of team members?
Does the team waste time and energy with interpersonal risk management?
If the answer was yes to any of these questions, the team may be prone to groupthink
behavior and interdisciplinary collaboration may be at risk. Here are some telltale signs
that groupthink behavior may exist:
BEWARE of GROUPTHINK!
Used with permission from: Lencioni, P. (2002). The Five Dysfunctions of a Team: A Leadership
Fable. San Francisco: Jossey-Bass. 204.
Plan
Team-based palliative care requires that all team members engage in the planning
process.
Although Mrs. Lindsey’s hospice team was able to effectively engage in collabo-
ration with one another, the collaborative process resulted in conflict. Conflict dur-
ing group discussions is important and reflects quality decision making. John, the
chaplain, did not allow the rest of the team to stereotype Mr. Lindsey as a “jerk.”
Rather, he highlighted the benefits of Mr. Lindsey’s involvement. John’s role dur-
ing this case discussion reflects the team’s ability to consider alternative courses
of action and avoid groupthink behavior. Other tips for avoiding groupthink are
included in Box 8.7.
Adapted from: Whyman, W., & Ginnett, R. (2005). A question of leadership: What can leaders
do to avoid groupthink? Leadership in Action, 25 (2), 12.
238 communication in palliative nursing
Intervene
Good patient care is predicated upon effective, unified teams led by a directive leader
assigned within the system (Degnin, 2009). Nurses often serve as team leaders during
palliative care team meetings, and this role can influence group communication pat-
terns. To help the team achieve collaboration, nurses need to use interpersonal relation-
ship skills to help team members establish mutual respect and trust as well as facilitate
conflict resolution (Petri, 2010). For members of Mrs. Lindsey’s team, conflict emerges
from the team’s inability to establish a collective goal for her case. Collaborative prob-
lem solving is impeded when team members do not have the same sense of the “prob-
lem.” During Mrs. Lindsey’s care planning, some team members prioritized the loss of
the marriage and betrayal as key factors that should influence decision making. On the
other hand, John recognized that the immediate need for the care plan was a primary
caregiver. Handling difficult conversations, before, after, or during team meetings, can
result in further conflict and segregation of team members—however, when handled
appropriately with the right message structure these discussions can transition into
moments that foster team membership (Figure 8.2, Boxes 8.8 and 8.9).
The following communication skills are critical to learn and practice on teams:
✓ Actively Listen: Rephrase the issue and repeat the statement.
✓ Define the Problem. Emphasize the areas of agreement and frame the area of
disagreement.
✓ Open Questions. Ask questions that encourage discussion and permit disagreement.
“Can you tell me more about it?” “What else do we need to consider?”
✓ Clarify Responses. Help others recognize members’ attitudes and feelings.
✓ Paraphrase and Reframe. Summarize discussion to ensure that the disagreement is
understood. Explore group problem solving and encourage solutions that have not
been considered before.
(continued)
239 Team
Used with permission from: Hyer, K. (C. Rader, Ed.). (1998). Module 20. Interdisciplinary
Collaboration for Elder Care. Funded by John A. Hartford Foundation – Institute for Geriatric
Nursing.
Evaluate
Agreeing on a problem-focused process and openness to share resources can lead to
effective interdisciplinary collaboration (Petri, 2010), yet team members still need to
reflect on these processes and evaluate their own communication. It’s likely that most
teams have never considered team goals outside of the organization’s requirement that
SHIFT
From To
Perspective
Delivery Learning
Debate Exploration
Simplicity Complexity
I understand Help me
understand.
I am right I am curious.
Language
I know what you I know the impact
intended on me.
figure 8.2 Shifting difficult conversations from confl ict toward learning
240 communication in palliative nursing
a team meet regularly. Use the following list (Box 8.9) to establish a team goal, such as
improving/addressing the safety of home patients, which can be accomplished through
collaboration. When a team identifies a goal, team members create a measuring stick
for evaluating their own practices. Setting goals is important. But it is also important
to consider team communication processes that enable these goals to be met. When
evaluating your own team, consider the communication practices that enable effective
interdisciplinary collaboration. Table 8.1 is a form to use for team evaluation. This
form can be used by an outside evaluator, such as a nursing or medical student who is
observing your team during a hospice/palliative care rotation. Students are excellent
observers as they are not familiar with informal group dynamics, such as group rules.
The form becomes a learning tool for the student as well as an assessment tool for team
communication practices.
Box 8.9
✓ CHECKLIST
Used with permission from: Youngwerth, J., & Twaddle, M. (2011). Cultures of interdisciplin-
ary teams: How to foster good dynamics. Journal of Palliative Medicine, 14 (5), 650–654.
CHAPTER SUMMARY
Alongside clinical knowledge in palliative care settings, nurses need team communi-
cation skills to establish a leadership role on the palliative care team. Team-building
skills include encouraging other team members to actively contribute during team
decision making, fostering opposing viewpoints when they arise in care planning, and
evaluating team goals and communication processes. Representing the cornerstone
of the COMFORT model, this chapter presented an overview of team communica-
tion, focusing on interdisciplinary collaboration and warning against communication
241 Team
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DISCUSSION QUESTIONS
1. What are the characteristics of an interdisciplinary team?
2. Provide an example of task and relational communication within a team.
3. What are the four elements of the model of interdisciplinary collaboration? Give
an example for each one.
4. In what ways do nurses practice psychospiritual care?
5. What are the collective goals of a palliative care team?
245 Team
1. Focused discussion toward a goal. This may be accomplished if one or more group
members:
• Determine the most important goals for the group
• Keep discussion moving by limiting extraneous conversation
• Are practical/realistic when making contributions to discussion
• Keep interest of group members by recruiting participation from those less
vocal
• Are willing to take charge of the collaboration process
• Are willing to let someone else take charge
• Create rules to guide collaboration (e.g., one person speaks at a time)
• Follow/enforce rules
2. Ensuring all options have been considered. This may be accomplished if one or
more group members:
• Explain/justify preferences for specific ideas rather than merely state them
• Recruit advocates for the available options
246
247 Team
• Require others to explain nonspecific justifications (e.g., “I just like that one.”)
• Play devil’s advocate before eliminating an option
• Allow silence so that those less vocal can have the opportunity to contribute
• Keep all group members involved
• Avoid relying on supposed democratic processes. For example, decisions made
by majority rule may bypass more valid but less popular options.
• Consider options that are more unusual or “outside of the box”
• Consider even obvious options
• Consider unlikely or “wishful thinking” options
As a follow up to this assignment, instructors can provide students with a patient case
study and ask them to collaborate on developing an appropriate plan of care. Following
this exercise, students should discover that they are more satisfied with the experience
when collaboration occurs instead of compromise.
Adapted from: Kurylo, A. (2010). Teaching the difference between compromise and
collaboration through trial and error. Communication Teacher, 24(1), 25–29.
Exercise #2
Box 8.10 details the case for this exercise. The goal of the meeting you are about to join
is to come up with an interdisciplinary care plan for Ms. J. Please decide your team
roles and prepare an agenda for the meeting. Decide how you will conduct your team
meeting. You should plan on 20 minutes for your team meeting.
Box 8.10
Debra J. is a 55-year-old woman, widowed, and living in a small rural town in the Central
Valley. She has worked on an assembly line at a local manufacturing plant for the past
25 years. She drives to work in an old car.
Debra married at 15 and had her three children before age 20. She did not graduate
from high school. Her husband died 5 years ago of a heart attack and left her a $70.00
monthly pension from his work on the railroad. She lives on her family’s farm with her
85-year-old mother. Her children are all away from home. Her two eldest live out of state,
and her youngest daughter lives in San Francisco
Medical History. BP = 150/80; Weight = 150 lbs.; Height = 5’5”
She has smoked one pack per day for 30 years, had her lower teeth extracted at age
40 with dentures made, and had three normal vaginal deliveries. She has two or three uri-
nary tract infections per year. In addition to her work on the assembly line, she works long
hours on the family farm. She is beginning to show signs and symptoms of degenerative
joint disease in her hands and knees. She comes to the clinic today for a simple check-up.
248 communication in palliative nursing
Questions
• What team members need to be involved in this case?
• What are Ms. J’s most important health issues, and who should be involved in man-
aging these issues?
• Develop a management plan for Ms. J.
Use the following grid to assess the patient’s situation from each need aspect (med-
ical, emotional, etc.) and identify the impact of the problem on the patient’s health
and quality of life. Identify community or family resources that could be redirected to
address the problem and outcomes or triggers to notify the team that the plan is or is
not working. The care plan should identify what activities are expected but also which
member of the team is responsible for initiation, follow-up, and reporting back to the
team with the results.
Assess the actual functioning of the team—the team process and the efficiency of
addressing clinical aspects or needs. The learners/participants should be able to develop
the plan and set the priorities for the team plan of care, and be able to evaluate what
to look for and when to determine if the plan was effective. The last step reinforces the
team’s responsibility for ongoing care management and joint accountability.
Considering the patient’s medical, emotional, social, environmental, and economic
needs, answer each of the following questions:
• What is the overarching goal? At least three perspectives need to be considered and
reconciled: (a) the patient; (b) his/her family; and (c) the team.
249 Team
• What are the patient’s problems? Consider a wide range of possible foci: medical,
emotional, social, environmental, and economic.
• What is the impact of each problem on the patient’s health and quality of life?
• What strengths and resources does the patient have or can be mobilized to deal with
each problem?
• What additional information is needed to adequately define the problem or its
implications?
• What is the plan of care? What needs to be done? Who will do it? When will it
happen?
• What priority should be assigned to each problem in either a linear order or catego-
ries of importance?
• How important is its effect on the overarching problem? What other factors might
influence its relative priority?
• What outcomes should be expected for each problem? Express each in measurable
terms. When would be an appropriate time to measure the outcomes?
Used with permission from: Siegler, E., Hyer, K., Fulmer, T., & Mezey, M. (1998). Geriatric
Interdisciplinary Team Training. Module 20. Interdisciplinary Collaboration for Elder Care. Funded by
John A. Hartford Foundation – Institute for Geriatric Nursing.
Exercise #3
To help students learn to develop creative communication strategies when dealing
with complex or difficult team members, introduce the class to contrasting pictures
of an animal, for example, an angry animal versus a sweet, cuddly animal. Pictures
must be of the same animal type (e.g., dog, cat). Place students in small groups and
ask them to brainstorm creative ways to transform the angry animal into the nice
animal. Encourage them to be creative in their ideas and methods for taming the
angry animal. You should allow the groups about 15 minutes to complete the brain-
storming task.
Next, small groups should send a designated leader to the board to share their ideas
with the rest of the class. Using the ideas on the board, the instructor should review
the chapter material on groupthink. Analogies can be drawn from the class ideas to the
deliberate steps that can be taken to work with difficult team members. First, instruc-
tors should begin by identifying behaviors that can build a supportive communication
climate among team members (e.g., active listening, showing support, and expressing
solidarity). Second, instructors should discuss varying personality types and group
behaviors. For example, issues such as dominance and control can be contrasted with
the need for understanding, inclusion, affection, self-esteem, and hesitancy to speak in
a small-group format.
The class list of taming methods should be reviewed, and students should be
encouraged to develop analogies to the interpersonal and small group behaviors
250 communication in palliative nursing
(see example table below). For example, a common taming method is to feed the
animal. The instructor then has students list communication strategies related to
“feeding” a team member, such as spending more time with the individual and
engaging in social and relationship building outside of the team format.
Ideas for taming an animal and corresponding communication strategies were taken from Eckstein
(2005).
Exercise #4
For instructors who wish to develop small group assignments in their course, this
assignment may be done to establish small-group relationships. First, instruct small
groups to spend time together engaging in at least four activities. A picture of all group
members engaging in the activity together must be provided for evidence of the activ-
ity. For example, one of the activities may be to share a meal together. Second, instruct
small groups to develop a set of communication rules for their small group. These
251 Team
rules will serve as a code of conduct for acceptable behaviors and group operating
procedures. Some things to consider are:
• What should a member do if he or she cannot attend a meeting? What are acceptable
reasons for absences, if anything?
• Who is going to organize the agenda for our meetings?
• What do we expect group members to do/have ready for meetings?
• How will we manage conflict?
Students should be given 2 weeks to complete their activities and provide the
instructor with a written report that summarizes activities, provides pictures of the
group’s experiences, and details the group’s set of communication rules. Ideally, groups
should present their experiences and highlight what they learned about other group
members by engaging in shared experiences.
Additional assignment: Instructors may wish to use the team’s communication rules
as a grading rubric for team assignments. The rules may also be used for peer evalu-
ation should the instructor decide to include team member evaluation of other team
members.
Adapted from: McBride, M. C. (2006). “—ing” Project: Encouraging cohesion in small groups.
Communication Teacher, 20 (2), 53–56.
Exercise #5
Ellingson (2003) provides extensive work on the backstage communication pro-
cesses of interdisciplinary teams. Pair students or establish several small groups in
the classroom. Provide students with a handout of the table below. Instruct students
to review each verbal behavior by sharing their own examples and then discussing
whether or not the communication enhances or decreases opportunities for inter-
disciplinary collaboration among team members.
Request for clarification Questioning each other about information about the patient
being discussed
Request for opinion Questions that solicit opinions on issues such as patient/
caregiver affect, depression or to confirm their own opinion
or initiate discussion about how team members can resolve
problem
Offering of information Information shared that would provide practical assistance to
other team member’s communication with patient
(continued)
252 communication in palliative nursing
Adapted from: Ellingson, L. L. (2003). Interdisciplinary health care teamwork in the clinic back-
stage. Journal of Applied Communication Research, 31, 93–117.
Exercise #2
See also:
Adams, T. (2005). Vote red, vote green: A class exercise in groupthink dialectics. The
Florida Communication Journal, 333(1), 15–22.
9
communicating self-care needs
Nurses are in a uniquely vulnerable position in the practice of palliative care. Not only
do they witness the suffering of patients and their families—and also the anxiety and
grief of their fellow palliative care team members—but they also suffer their own pain
and grief. They are both participant and observer in what is arguably life’s most stress-
ful crisis: the transition from life to death. An inseparable relationship often exists
between the suffering person and the professional who provides care while witness-
ing that suffering, as each party is vulnerable to the other (Ferrell & Coyle, 2008).
Thus, nurses frequently must step back and ask the question: “Whose suffering am
I experiencing?” (p. 87). Particularly when patients face discouraging diagnoses, nurses
must strive to find that delicate balance in continuing to care for the patient while also
acknowledging the patient’s and family’s—as well as their own—fears.
In their book on the nature of suffering and the goals of nursing, Ferrell & Coyle
(2008) note that all nurses encounter suffering on a daily basis; yet, palliative care, hos-
pice, and oncology nurses are particularly vulnerable to patient suffering. The relief
of suffering is central to oncology nursing: “ . . . working with cancer patients means
‘being there’ for people in their most private moments of suffering and responding
to the heights and depths of their responses to this suffering” (Cohen & Sarter, 1992,
p. 1485).
Much of the suffering nurses must face is caused not only by their stress from wit-
nessing the suffering of others but also by the stress of witnessing (and occasionally
being forced to deliver) medically futile care (Ferrell and Coyle, 2008). Nurses across
care settings have identified “aggressive care” and “aggressive care denying palliative
care” as the most common sources of their distress in caring for critically ill and dying
patients and their families (Ferrell, 2006). Conflicts and feelings of moral distress
related to futile care occur between patients and their families, between patients/fami-
lies and their medical teams, or even within the medical team itself. This experience of
distress is linked to burnout—nurses’ emotional exhaustion related to the frequency
of incidents regarding care seen as futile or unbeneficial (Meltzer & Huckaby, 2004).
Thus, there is much need for nurses to be able to self-reflect, engage peer support, and
permit themselves to grieve in the face of the stress of witnessing these futile care inci-
dents (Stairs, 2000). We close this volume by emphasizing the importance of self-care,
encouraging nurses to be aware of their feelings and to communicate these feelings to
others.
253
254 communication in palliative nursing
Just as the patient and family need to tell their story, to have it be heard by others as
a way of making meaning out of what they experience and witness, nurses also need
opportunities to share their experiences and emotions with others. It is essential that
nurses be aware of and deal with their own grief and sense of loss when a patient receives
a terminal prognosis or when a patient succumbs to disease (Baird, 2010; Ferrell & Coyle,
2008; Levine & Levine, 1999, as cited in Baird). For many nurses, there is often an ina-
bility to separate their professional and personal lives when loss is so prevalent (Ablett &
Jones, 2007; Arnaert & Wainwright, 2009). Working conditions, inadequate preparation,
lack of time to relax or grieve, and staff relationships contribute to workplace stress and
necessitate communication and self-disclosure about the emotional labor of palliative
care work (Barnes, 2001; McCloskey & Taggart, 2010). Commonly, nurses do not attend
to self-care, and job stress emerges at home—impacting relationships and causing irrita-
bility, sleeplessness, and fatigue (McCloskey & Taggart, 2010).
When nurses are tired and overworked, they are unable to provide adequate care
and to appreciate their role and relationships with patients and families. Inadequate
self-care can lead to quicker emotional responses than normal, a tendency to overreact
with clinical team members and family, and anger. The call button becomes easier to
ignore, emotions become easier to tuck away and hide with busy clinical work, and
withdrawing from clinical team members, patients, and families becomes a routine
coping mechanism that results in burnout (Blomberg & Sahlberg-Blom, 2007). Some
nurses feel that the only remedy is to call in sick, feeling guilty that they want to avoid
work and momentarily escape daily pressures from their job (McCloskey & Taggart,
2010), or even worse, to leave the field of palliative care or nursing.
While palliative nurses have an awareness of their own mortality and spirituality (Ablett
& Jones, 2007), clinical situations can require nurses to enact decisions that do not reflect
their own choices or beliefs. Nurses encounter challenges related to patient decision
making, particularly when a nurse feels the patient is at risk, as well as disagreements
over the appropriateness of treatment between the provider and family (Brazil et al.,
2010). Some of the more uncomfortable circumstances include families who refute the
patient’s advance directives and insist that staff do “everything” to save the patient’s life.
Family complexities can involve working with ex-family members, dysfunctional fam-
ily systems, and requests to conceal the type of care being offered (hospice/palliative)
(Gentry, 2008). Nurses also struggle to impact care for patients when no family is pres-
ent and little is known about the patient’s life (Brazil et al., 2010).
Finally, nurses work in the dysfunction of hospital systems or hospice agencies
that sustain a complex communication climate that leaves little to no time or energy
for self-care. Nurses feel stress when workloads are high, as a result of shift work, or
an effect of staff shortages (Ablett & Jones, 2007). Although continuing education
training is regularly offered, stress can be high for nurses who learn a great deal from
on-the-job training (Arnaert & Wainwright, 2009). The organizational structure that
dictates service delivery routines can result in a lack of clear roles, professional bound-
aries that aren’t clearly defined, and multiprofessional work that is difficult to accom-
plish (Gupta & Woodman, 2010). Table 9.1 provides suggestions for how to build a
collaborative partnership among peers.
Burnout and compassion fatigue are typical responses to the stressors that palliative
care nurses confront daily (Vachon & Huggard, 2010). Nurses experience emotional
exhaustion, feelings of cynicism and detachment from the job (depersonalization),
and a sense of ineffectiveness and the lack of personal accomplishment (Maslach, 2003;
Maslach & Leiter, 2008; Maslach, Schaufeli, & Leiter, 2001). Symptoms of burnout can
be found at the physical, psychological, occupational, and social levels. Compassion
fatigue—the physical and spiritual exhaustion that comes from compassionate care-
giving, particularly in futile care—manifests in symptoms closely related to those of
posttraumatic stress disorder; in contrast to burnout, however, nurses with compas-
sion fatigue can still care and be involved.
Because of the occupational hazards of burnout and compassion fatigue, Vachon
and Huggard (2010) stress the importance of self-care for oncology and palliative care
Used with permission from: Arnaert, A., and Wainwright, M. (2009). Providing care and sharing
expertise: Reflections of nurse-specialists in palliative home care. Palliative and Supportive Care,
7(3), 357–364.
256 communication in palliative nursing
nurses. Vachon (2008) notes that as oncology nurses educate cancer patients about
the importance of wellness strategies, they should take their own advice and integrate
wellness changes in their own lives. Puchalski (2008) suggests that the practice of com-
passionate presence (see also Chapter 4) lessens the likelihood of burnout and com-
passion fatigue—if health care professionals are trained to be compassionate, burnout
is likely to be diminished.
Used with permission from: Jones, S. H. (2005). A self-care plan for hospice workers. American
Journal of Hospice & Palliative Medicine, 22 (2), 125–128.
257 Communicating Self-Care Needs
Used with permission from: Davidhizar, R., & Shearer, R. (1996). Using humor to cope with stress
in home care. Home Healthcare Nurse, 14 (10), 825–830.
their own feelings about dying and death (Sherman, 2004). Puchalski and McSkimming
(2006) described interventions to promote healing environments in hospitals. Such
interventions focused on the spirituality of health care professionals and included
brown bag lunches and workshops on spiritual care as well as mindfulness meditation
and mindfulness-based stress reduction (mindfulness is discussed briefly in the next
paragraphs and more fully in Chapter 4). See Table 9.2 for self-care planning tips.
Because of the emphasis of mindfulness on self-care, compassion, and healing, it
is seen as a relevant intervention in promoting nurses’ attempts to care for themselves
in their stressful environments. Mindfulness-based stress reduction in particular is a
helpful self-care strategy for nurses (Mackenzie, Poulin, and Seidman-Carlson, 2006).
One way to achieve the deep personal and interpersonal understanding and sensitiv-
ity required of nurses is by practicing the tenets of mindfulness such as awareness of
the moment, nonjudging acceptance, patience, and kindness (Henry & Henry, 2003;
Mackenzie, Poulin, and Seidman-Carlson, 2006). As noted earlier, nurses are faced with
even greater stress and burnout due to an increasingly complex health care system and
sicker patients. Indicators of stress are summarized in Table 9.3. Several studies have
demonstrated reduced stress, increased coping, and improved empathy in health care
providers after they have completed a mindfulness-based stress reduction program
(Beddoe & Murphy, 2004; Galantino, Baime, Maguire, Szapary, & Farrar, 2005).
258 communication in palliative nursing
Bruce and Davies (2005) in particular found that staff and volunteers at a Zen hos-
pice who practiced mindfulness meditation reported more empathy and attentiveness
to their patients, such that it was easier for them to discuss death with their patients
and to better cope with patients’ imminent deaths. Mindfulness-based stress reduc-
tion for nurse stress and burnout has resulted in more relaxation and self-care and
improvement in both work and family relationships (Cohen-Katz, Wiley, Capuano,
Baker, & Shapiro, 2004, 2005a, 2005b).
Structured reflection—an insightful analysis of one’s own experiences, thoughts,
and feelings—is a component of communication said to occur at the intrapersonal
level or within the person herself. The essential need for palliative care nurses’ self-care
involves knowing oneself thoroughly, understanding one’s motivations, being aware
of one’s special talents and abilities but also of one’s liabilities, and being able to put
this self-knowledge to work in effective interactions with patients, families, and other
members of the health care team. The attributes of mindfulness, presence, empathy,
and deep listening, described in preceding chapters, are paramount to achieving this
self-knowledge and must be nurtured by effective palliative care nurses. Developing
such attributes also requires a keen awareness of one’s thoughts, feelings, attitudes,
beliefs, and values. By becoming more self-aware, nurses can help to better manage
those stressors in their work environment that contribute to burnout, compassion
fatigue, suffering, and grief.
One of the concepts most useful to self-care is self-compassion, the ability to
feel compassion for oneself (Neff, 2003a, 2003b; Neff, Kirkpatrick, & Rude, 2007).
Self-compassion as: “being open to and moved by one’s own suffering, experiencing
feelings of caring and kindness towards oneself, taking an understanding, nonjudg-
mental attitude toward one’s inadequacies and failures, and recognizing that one’s
experience is part of the common human experience” (Neff, 2003a, pp. 85–102).
Elements of self-compassion include common humanity (shared human expe-
rience), self-kindness (which is different from self-pity), and mindfulness (Neff,
2003a.) Self-compassion requires a fair, objective awareness of one’s emotions; it
includes the process of confronting rather than avoiding painful thoughts and emo-
tions. Developing an awareness of and appreciation for self-compassion is helpful
not only for palliative care nurses’ self-care; self-compassion also may permit nurses
to feel more compassionately toward their patients (Heffernan, Griffin, McNulty, &
Fitzpatrick, 2010).
Ferrell and Coyle (2008) point out that nurses’ spirituality may influence their
responses to suffering in ways that are similar to how patients and families experi-
ence their own spirituality in facing terminal illness: “ . . . nurses frequently struggle
in an attempt to balance the patient and family’s faith with their own and to balance
personal and professional values” (p. 96). Yet in a study conducted by Ferrell, Virani,
Grant, Coyne, & Uman (2000), nurses initially did not report their own spirituality as
being linked to their experiences of suffering. Ferrell et al. (2000) believe that this sug-
gests that nurses may have been trained to separate their own faith and personhood
from their role as nurse—that their education may be one that separates mind, body,
and spirit (teaching that is also damaging to patient care).
259 Communicating Self-Care Needs
Sherman (2010) also advocates that palliative care nurses should engage in
self-reflection and self-healing and should explore their own values and attitudes
toward death. She further states that nurses have the potential to provide spiritual
care to their patients, yet the ongoing care of the dying may drain their energy and
uncover spiritual issues—thus, there is a need for spiritual growth and renewal as
part of staff support. A study by Hunnibell, Reed, Quinn-Griffin, & Fitzpatrick (2008)
found that hospice and palliative care and oncology nurses measured high on a scale
for self-transcendence, which is the awareness of one’s spiritual self, one’s relationship
to others and to a higher being, and finding meaning and purpose in life.
Self-compassion is also linked to emotional intelligence in nurses—the ability
to recognize and to manage emotions. Emotional intelligence is useful in potentially
enhancing patient care as well as maintaining nurses’ emotional health while also pre-
venting burnout (Davies, Jenkins, & Mabbett, 2010). Emotional intelligence creates
self-awareness, allows nurses to control their emotions, enhances assessment, and pro-
motes palliative care and leadership (Davies et al., 2010). The clinical setting of pal-
liative care requires a high level of emotional intelligence in order to foster different
coping strategies to prevent burnout. Informal team support can play a pivotal role in
sustaining emotional intelligence in such a demanding clinical environment (Davies
et al., 2010).
Borneman and Brown-Saltzman (2010) stress the need for self-care for dealing with
grief, particularly since nurses are at great risk for turning away from feeling—most
nurses receive little mentoring, debriefing, or counseling after their first death experi-
ence. Scant research has looked at the effect on nurses of cumulative losses and many
years of witnessing suffering. As a result, Borneman and Brown-Saltzman (2010) rec-
ommend: “healthcare needs healing rituals for all its health-care professionals” (p. 682).
They point out one example of such a healing ritual, a renewal program known as the
“Circle of Caring” which is a self-care weekend retreat integrating spirituality, the arts,
and community building.
In discussing palliative care nurses’ inevitable loss, suffering, grief, and bereavement,
Potter (2010) poses the need for nurses to self-assess: where am I (the nurse) on the
journey toward healing? In conflict with traditional nurse training in which nurses are
encouraged to maintain composure and not to express emotion, Potter advocates that
“constructive self-disclosure of feelings by the nurse may role-model to others a healthy
process of acknowledging and resolving the suffering of loss” (p. 208). Examining their
own personal experiences with death helps nurses to better understand their fears and
anxieties surrounding it. Potter (2010) believes that nurses must engage in self-care by:
getting support from colleagues; ensuring time for self; maintaining healthy boundar-
ies with patients/family; and tending to their physical emotional, and spiritual needs.
OPPORTUNITIES TO COMMUNICATE
SELF-CARE NEEDS
The team-based structure of palliative care can and should provide both informal
and formal environments for nurses to discuss their feelings, emotions, worries,
260 communication in palliative nursing
experiences, regrets, hopes, and anxieties related to workplace stress (Blomberg &
Sahlberg-Blom, 2007; Wittenberg-Lyles, Oliver, Demiris, Baldwin, & Regehr, 2008).
While clinical frontstage communication and activities include rounds and meet-
ings with patients and families, nurses also engage in backstage communication and
activities that occur in hallway conversations; before, during, and after team meet-
ings; and over lunch (Ellingson, 2003; Lewin & Reeves, 2011). These encounters, both
planned and unplanned in front and backstage, facilitate impression management
between colleagues and either legitimate healthy changes in the workplace or simply
perpetuate them (Lewin & Reeves, 2011; Wittenberg-Lyles, Parker Oliver, Demiris, &
Cunningham, 2011). The nurse’s station is a regular site for planned and unplanned
backstage communication.
Communication between colleagues, away from families and patients, is where
emotional work has the potential to occur. The team environment allows nurses
to vent workplace stress, share difficult patient/family situations, seek and receive
confirmation for care choices, and share emotions (Goldsmith, Wittenberg-Lyles,
Rodriguez, & Sanchez-Reilly, 2010; Wittenberg-Lyles, 2005; Wittenberg-Lyles, Gee,
Parker Oliver, & Demiris, 2009). Nurses naturally rely on other nurses to support
care decisions, especially with regard to pain management (Arnaert & Wainwright,
2009). Ad hoc as well as planned backstage communication can and should allow
nurses to work on overcoming problems with other staff members (Lewin &
Reeves, 2011).
Team meetings that take place prior to or after patient rounds, or as part of inter-
disciplinary team structure, can be used to create an appropriate interpersonal climate
for sharing and releasing the emotional burden of palliative care work. An interper-
sonal climate is the feeling or emotional mood that is created between people and can
include defensive or supportive communication (Wood, 2004). Supportive commu-
nication can foster working relationships that contribute to self-care. The way we relay
messages to one another can foster a supportive communication climate. To become
more effective at contributing thoughts on clinical decisions, nurses should engage in
language that describes instead of evaluates. Think about the difference between these
two messages: (1) “You shouldn’t have done that.” (2) “You seem to have more to do
today than usual.” The first statement evaluates what someone else has done, while the
second statement merely describes. The simple difference in these two messages is the
outcome that results in a defensive or supportive communication climate. To create
supportive climates, nurses need to remain open to other points of view and engage in
open, honest, unpremeditated communication (Wood, 2004). Ideas for coping strate-
gies can be found in Table 9.4.
Using “I statements” as discussed in Chapter 4 is one way nurses can convey their
point of view while remaining open to hearing other opinions. For example, “The
way I tend to see the issue is . . . ” is much better than saying “I’ve already decided the
best way to handle this patient is . . . ” Team discussions should also be problem ori-
ented and focus on solutions rather than blame. During clinical rounds and team
meetings, nurses should express empathy with other team members and confirm that
their thoughts and feelings are a concern to the entire team. Teams possess powerful
261 Communicating Self-Care Needs
Used with permission from: Keidel, G. C. (2002) Burnout and compassion fatigue among hospice
caregivers. American Journal of Hospice and Palliative Care, 19 (3), 204.
potential for reflective practice in order to improve their own self-care experience and
sustainability as health care workers (Goldsmith et al., 2010).
Nurses should connect with other team members to form support groups, share stories
and experiences, keep a journal, and recognize their positive, individual contributions to
patient care (Sherman, 2010). Offstage is a third location that coworkers can experience
away from their work place (Lewin & Reeves, 2011). Spending time in a new context with
the people one experiences so much pressure and loss with can be a wonderful reframing
and provide people access to new characteristics and skills possessed by their coworkers.
Even in the pressure-filled spaces of the workplace, creative experiences of decom-
pression with teammates can be created. Carry-in meals for sharing, short yoga
stretches before lunch, and relieving the busiest nurse on the floor are small opportu-
nities to offer and experience self-care in the course of a busy day. “In caring for people
with life-threatening and progressive illness, nurses must remain in tune with their
own spiritual needs, healing themselves as well as others” (Sherman, 2010, p. 30).
FOCUSED SELF-REFLECTION
Once aware of the need for focused self-care, nurses can engage in focused reflection by
journaling about their thoughts and feelings, seeking support from friends and colleagues,
prioritizing celebrations such as birthdays and holidays, and engaging in other forms of
distraction such as reading, exercise, or vacation (Anewalt, 2009). Journaling is a form of
262 communication in palliative nursing
expressive writing that provides opportunity for reflection (Lauterbach & Hentz, 2005).
Expressive writing exercises require participants to reflect on their deepest thoughts and
feelings about an event or series of events (Sexton et al., 2009). Most nurses are exposed
to journaling and reflective activities during undergraduate nursing education. Journaling
can reveal interdisciplinary relationships and team processes and impact patient care and
professional development (Makowsky et al., 2009). Clinician stories about palliative care
reveal deep, intimate relationships with patients and families and spiritual strengthening,
both fostering the strength to control emotions at the bedside and devotion and loyalty to
special patients (Wittenberg-Lyles, Greene, & Sanchez-Reilly, 2007).
The ability to formulate a good story, in which both successes and losses are recognized
to create meaning and understanding, can also yield several health benefits (Graybeal,
Sexton, & Pennebaker, 2002). Writing has biological effects, including enhanced immune
systems, decreased medical health markers among individuals with chronic health prob-
lems, and reduction in physiological stress (Pennebaker, 2004). Additionally, research has
shown that an individual’s mood changes after writing (Pennebaker, 2004).
Importantly, self-care should be modeled and encouraged by nurse leaders and
nurse managers. Managers can mediate communication between clinical staff and
encourage a supportive communication climate. Early-career nurses need to learn to
emphasize self-care alongside clinical work obligations, and managers should provide
protected time for these nurses to incorporate self-care into their daily routine. Feeling
balanced involves having self-awareness, active coping, feeling spiritually enriched, and
setting boundaries between professional and personal life (Rose & Glass, 2009).
Ferrell & Coyle (2008) advocate that nurses’ suffering needs to be addressed in educa-
tion and research: “Schools of nursing and continuing education programs can teach
the skills of listening, responding to anguish, hearing ‘why’ questions, and in fundamen-
tally re-envisioning what it means to be a nurse—perhaps even helping us return to our
roots” (Ferrell & Coyle, 2008, p. 106). They cite physician Rachel Naomi Remen’s work
on how serving patients sustains nurses as health care providers, even in the face of suf-
fering and death: “our service serves us as well as others. That which uses us strengthens
us. Over time, fixing and helping are draining, depleting. Over time we burn out. Service
is renewing. When we serve, our work itself will sustain us” (Remen, 1996, p. 24).
CHAPTER SUMMARY
The uniquely stressful environment of nursing and of palliative care nursing in particu-
lar makes self-care imperative. In this chapter, we have identified how communication at
both the intrapersonal and interpersonal levels can facilitate such care. Intrapersonally,
nurses can learn to be aware of their feelings, behaviors, and values through such prac-
tices as self-reflection and journaling. In this way, both self-compassion and emotional
intelligence can be fostered—both of which help to prevent burnout and compas-
sion fatigue. Spiritual awareness can also enhance a nurse’s ability to cope with the
suffering and death inevitably experienced in the context of palliative care nursing.
Interpersonally, nurses and palliative care teams need to practice supportive rather
than defensive communication behaviors in an effort to ameliorate the stressors in
263 Communicating Self-Care Needs
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266 communication in palliative nursing
DISCUSSION QUESTIONS
1. Identify factors in palliative care settings that make self-care of special importance
for nursing.
2. What are strategies for nurses to better communicate their self-care needs?
3. What strategies can organizations initiate to create environments that support
self-care of staff?
EDUCATOR RESOURCES AND MATERIALS
Activity 1
Identify three to five people or things that are important to you. When was the last time
you called that person? When did you last spend quality time with that person? When
was the last time you did that thing? How are you currently caring for yourself? What
needs to change?
Activity 2
Make a list of the ways that you can tell that you are carrying too much loss. Think
about how stress impacts your body (e.g., sleep/eating patterns), your attitude (e.g.,
moodiness, depression), and your behavior (e.g, irritability).
Activity 3
Devote one team meeting a month to reflective rounds. Ask team members to bring a
journal and devote a half hour to a prompted reflective writing exercise (Alternatively,
these exercises can be done individually). Options include:
1. Describe a time when you were angry. Identify the clinical team members
involved, their reactions, how that made you feel, and what you did. Reflect on the
chapter’s discussion of supportive communication—what changes could you have
made to your own communication to help foster support?
2. Identify the most supportive clinical team member on your team. Describe your
interactions with this person. How does this person support your own clinical
work? What is his or her most admirable communication quality? Write a
statement that conveys how much he or she means to you (Alternatively, you could
send them a note telling them!).
4. Describe your most memorable patient. Identify the significance of this patient
in terms of communication (hint: you may need to use communication
concepts talked about in previous chapters). Was a supportive communication
climate in place? If so, identify aspects of the climate and provide examples.
If not, how could things have been changed to improve the communication
climate?
4. Sit yourself in your favorite spot at work. How do you feel? What are
your thoughts? What are you thinking about? Slowly expand from your
surroundings. What else is happening around you? Go beyond your field of
vision to reflect on aspects of the workplace that detract from your favorite
place at work.
267
268 communication in palliative nursing
5. Describe the most important thing in your life. Describe the second and third
most important things. Then the fourth and fifth most important things. (This
was taken from: http://www.davidrm.com/thejournal/tjresources-exercises.
php#journaling.)
Activity 4
To foster a supportive communication climate, have interprofessional team members
engage in a buddy system once a quarter. The buddy system consists of two different
interdisciplinary team members engaging in clinical work alongside each other as com-
pared with different visits. Team members should make note of new knowledge gained
from the experience, particularly in learning about their colleague’s contribution to the
plan of care or assessment. After a patient/family interaction, colleagues should debrief
about the plan of care and compare their perceptions and goals of the interaction.
Activity 5: Journaling
x What are the qualities/characteristics that you are proud to possess? What do your
friends love about you? Can you identify how you developed these traits?
x Who are the three most influential people in your life? Are they positive influences?
Why?
x Why did you enter the nursing profession? Why are you still here? What needs to hap-
pen to keep you here?
x Some days we wonder if we make a difference, and some days we are certain that we
do. Write about a connection you made with a resident/patient/client when you knew
that you were making a difference.
Activity 6
For each emotion listed below, identify a situation with a patient, family, and other
health care provider that warranted expression of that emotion.
Anxiety
Disappointment
Embarrassment
Passion
Happiness
269 Communicating Self-Care Needs
Adapted from Coopman, S., & Wood, J. (2004). Student Companion for Wood’s Interpersonal
Communication: Everyday Encounters (p. 146, activity 7.1). Englewood Cliffs, NJ: Thomson Wadsworth.
Activity 7
Use the structured reflection model below to focus your attention on feelings about
your actions with patients and the insights you have gained from these experiences:
Adapted from: Johns, C. (1995). Framing learning through reflection within Carper’s fundamental
ways of knowing in nursing. Journal of Advanced Nursing, 22, 227.
Activity 8
Below are some self-reflective questions to assist nurses in self-understanding of their
loss, suffering, death, grief, and bereavement:
x What experiences have you had with death? Describe your earliest memory of death.
Was anything positive about it? Was anything negative about it? Have you experienced
270 communication in palliative nursing
what you would call a “good death?” Have you experienced what you would describe
as a “bad death?”
x Can you picture yourself helping someone who is dying? How? What do you have to
offer that is special and unique?
x Relate what you believe happens when someone dies. What do you fear about death?
What do you fear about your own death?
x Assume you have just received news that you have been diagnosed with a terminal
illness. What would be the most difficult things for you to have to give up during this
time?
x How do you feel about cultural attitudes or behaviors that may be different from your
own?
Used with permission from: Potter, M. (2009). Loss, suffering, grief & bereavement.
In M. Matzo & D. W. Sherman, Palliative Care Nursing: Quality Care to the End of Life (p. 209). New
York: Springer Publishing Company, Inc.
Box 9.1
x May I offer my care and presence unconditionally, knowing that it may be met with grat-
itude, indifference, anger, or anguish.
x May I offer love, knowing that I cannot control the course of life’s suffering or death.
x May I remain in ease and let go of my expectations.
x May I view my own suffering with compassion just as I do the suffering of others.
x May I be aware that my suffering does not limit my good heart.
x May I forgive myself for things left undone.
x May I forgive all who have hurt me.
x May those whom I have hurt forgive me.
x May all beings and I live and die in peace.
Used with permission from: Halifax, J. (1999, October). Being with dying. Contemplations on
death and dying. Presentation at the Art of Dying III Conference: Spiritual, Scientific and
Practical Approaches to Living and Dying by the New York Open Center and Tibet House,
New York. Roshi Joan is the founder of Upaya Zen Center (www.upaya.org).
Box 9.2
Self-Care Assessment
Take a moment to consider the frequency with which you do the following acts of
self-care. Rate using the scale below:
4 = Often, 3 = Sometimes, 2 = Rarely, 1 = Are you kidding? It never even crossed my mind!
(continued)
271 Communicating Self-Care Needs
Physical Self-Care
Psychological Self-Care
Emotional Self-Care
Spiritual Self-Care
(continued)
272 communication in palliative nursing
Workplace Self-Care
Results
To compute your score, add all sections together and compare to the following ranges:
121–160 You’re a self-care guru! Share the wisdom with everyone around you.
81–120 You’re on the right track. Get creative in the areas of least scoring.
41–80 Uh-oh. There’s some work to do. Hunker down and focus on yourself.