International Series

Palliative Care for Patients With Heart Failure

An Integrative Review
Changhwan Kim, MSN, RN ¦ Sanghee Kim, PhD, RN ¦
Kyunghwa Lee, PhD, RN ¦ Jahyun Choi, MSN, RN ¦ Sookyung Kim, PhD, RN

Palliative care should be integrated into routine disease care should be culturally tailored to assist heart failure
management for all patients with serious illness, patients worldwide.
regardless of settings or prognosis. The purposes of this
integrative review were to identify the features of
randomized controlled trials for adult patients with heart KEY WORDS
failure and to provide basic references for the development advance care planning, chronic disease, heart failure,
of future trials. Using Whittemore and Knafl's integrative palliative care, review
literature review method, comprehensive searches of the

T
PubMed, Cochrane Library, CINAHL, EMBASE, and Korean
databases were conducted, integrating keywords about he prevalence of heart failure (HF) continues to in-
heart failure and palliative care interventions. Quality crease with an increase in the aging population.1
appraisal was assessed using Cochrane risk-of-bias tools. In The American Heart Association has reported that
total, there were 6 trials providing palliative care 50% of patients diagnosed as having HF die within 5 years,
interventions integrating team-based approaches between and 5% are at the end of life with a condition refractory to
palliative care specialists and nonpalliative clinicians, such medical treatment.1 Patients with HF have a significant bur-
as a cardiologist, cardiac nurse, and advanced practice den of symptom clusters, including pain, fatigue, dyspnea,
nurse across inpatient and outpatient settings. The depression, anxiety, insomnia, and loss of appetite, caus-
different types of interventions included home visits, ing deterioration in overall quality of life.2 This imposes
symptom management via phone calls or referral to a
an economic and structural burden on patients and their
specialist team, and the establishment of treatment
families, as well as the social health care delivery system
planning. Patient-reported outcome measures included
positive effects of palliative interventions on symptom caring for them.3
burden and quality of life. Given that most of the selected The treatment and management of patients with HF re-
studies were conducted in Western countries, palliative quire the consideration of combined physical, psychoso-
cial, and environmental factors.4 For instance, medical de-
vices such as pacemakers and implantable defibrillators
may be effective in the early stages of HF, but their benefits
Changhwan Kim, MSN, RN, is staff nurse, Department of Critical Care may gradually wane as the disease progresses. In addition
Nursing, Samsung Medical Center, Seoul, Republic of Korea. to the unpredictable prognosis, patients vary in their illness
Sanghee Kim, PhD, RN, is associate professor, Mo-Im Kim Nursing Research experience and perception toward overall disease man-
Institute, College of Nursing, Yonsei University, Seoul, Republic of Korea.
agement.5 As HF progresses, responsibility for end-of-life
Kyunghwa Lee, PhD, RN, is assistant professor, College of Nursing,
Konyang University, Daejeon, Republic of Korea. treatment decisions may change according to the patients'
Jahyun Choi, MSN, RN, is doctoral student, Department of Nursing, or their family's cultural norms and social context.6
Graduate School, Yonsei University, Seoul, Republic of Korea. The National Consensus Project Clinical Practice Guide-
Sookyung Kim, PhD, RN, is assistant professor, Department of Nursing, lines for Quality Palliative Care (NCP guidelines) defines
Soonchunhyang University, Cheonan, Republic of Korea. palliative care (PC) as an interdisciplinary care delivery sys-
Address correspondence to Sanghee Kim, PhD, RN, Mo-Im Kim Nursing tem designed to anticipate, prevent, and manage severe ill-
Research Institute, College of Nursing, Yonsei University, 50-1 Yonsei-ro,
Seodaemun-gu, Seoul, 03722, Republic of Korea ([email protected]). ness to optimize the quality of life for patients, their fami-
The authors have no conflicts of interest to disclose. lies, and caregivers.7 Considering the complex context of
This is an open-access article distributed under the terms of the Creative Com- chronic HF management and the important person-centered
mons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), philosophy of the PC approach, integrating comprehensive
where it is permissible to download and share the work provided it is properly PC (eg, pain and symptom management, navigating treatment
cited. The work cannot be changed in any way or used commercially without
permission from the journal. options, advance care planning [ACP]) into routine HF
Copyright © 2022 The Authors. Published by Wolters Kluwer Health, Inc. management has become the focus of care.
on behalf of The Hospice and Palliative Nurses Association. Although relevant academic societies such as the American
DOI: 10.1097/NJH.0000000000000869 College of Cardiology and the European Society of Cardiology

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 International Series

continue to report the adequacy and potential benefits of characteristics of the studies related to PC interventions
PC for patients with HF,8,9 referral to PC is not sufficient for patients with HF?” and (2) “What are the specific con-
or occurs too late compared with that for patients with can- tents, characteristics, and effects of PC interventions for pa-
cer or other chronic diseases.10 The causes include a lack tients with HF?” The Population, Intervention, Comparison,
of education and training for health care workers and the and Outcome framework was used to select the studies for
general public, a lack of a concept of shared responsibility, analysis. The population of this study included patients
inefficient communication, a lack of community support, with HF undergoing PC as the intervention method. The
and difficulty in predicting the prognosis.4 The NCP guide- control group was the group that did not receive PC inter-
lines emphasize that PC should be included for all patients vention, and the outcome was the result measured by each
with serious illness regardless of settings or prognosis and scale for each outcome variable. The following databases
that consideration of PC provision is the responsibility of were used: RISS, KoreaMed, and Korean Medical Database
all clinicians and disciplines.7 Thus, it is necessary to estab- (KMbase), CINAHL, PubMed, MEDLINE, and Cochrane
lish guidelines for the delivery of PC for patients with HF. Library CENTRAL. The main search keywords included
This study aimed to contribute to the basic design of future all related MeSH words (“heart failure,” “congestive heart
intervention programs by identifying and reviewing the spe- failure,” “palliative care,” “hospice and palliative care nursing,”
cific aspects of PC interventions reported in trials for patients “hospice care,” and “terminal care”), and a comprehensive
with HF. search of studies was conducted by constructing a search
formula linking the main keywords with AND/OR. The
data search was supplemented by reviewing the refer-
METHODS
ence list of the searched studies. The selection criteria
According to the integrative literature review methodology were (1) studies published in peer-reviewed journals
proposed by Whittemore and Knafl,11 this study conducted after 1995, (2) randomized controlled trials (RCTs) that
a literature review in 5 stages, including problem identifi- exclusively enrolled adults with HF, and (3) studies pub-
cation, literature search, data evaluation, data analysis, lished in Korean and English. The exclusion criterion
and presentation. Through a research meeting, the authors was research whose original full text could not be
clearly identified the scope and purpose of the research. found. A detailed flow chart of the literature selection
This raised 2 research questions: (1) “What are the is provided in Figure.

FIGURE. Flow diagram of study selection.

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The number of studies initially searched was 2221. After countries, including the United States13-16 and Sweden.17
excluding 1046 duplicate documents, the authors reviewed The number of enrolled participants ranged from 72 to 384.
the titles and abstracts; 24 studies of 1175 remained.
Through the full-text review, 17 studies were excluded Patient Selection Criteria
because of inappropriate subjects (eg, anticipated or In 4 of the 6 selected studies, the prognosis of the disease
postmechanical supportive care, transplantation), insuf- was reported as life expectancy12,17 and mortality risk13,16
ficient PC interventions (eg, intervention only to en- at the time of subject selection. The reference point for
hance ACP and goals of care or to reduce physical symp- selecting subjects for PC intervention was typically 6
tom burden) and inappropriate study design. In total, 6 months to 1 year. The severity of HF was classified by the
studies were included in the qualitative synthesis. Two New York Heart Association (NYHA) classification or ejec-
authors independently evaluated the quality of the stud- tion fraction (EF), being 4 studies12,13,16,17 and 3 studies,12,13,16
ies using Cochrane risk-of-bias tool, assessing the quality respectively. In addition, Bekelman et al15 assessed the severity
of each item as low, high, and unclear (see Table 1). Con- of the disease using the Kansas City Cardiomyopathy Ques-
cerning the inconsistencies among the evaluators, the third tionnaire (KCCQ), commonly used as an HF disease-specific
author was consulted to resolve disagreements during the scale for selecting subjects for PC intervention. Multiple
methodological quality assessment. Two authors analyzed hospitalizations within 6 months or 1 year was one of the
each of the 6 selected studies. In addition to the general repeated patient selection criteria. Meanwhile, exclusion
characteristics of the literature, they analyzed the charac- criteria repeatedly mentioned in the selected studies were
teristics of patient selection for the intervention, the inter- (1) cognitive impairment such as dementia or psychiatric
vention location and provider, the intervention content, disorder, (2) an anticipated heart transplant or left ventric-
outcome measurement, and the main effects. Table 2 shows ular assist device (LVAD), (3) posttransplant or LVAD, and
a summary of the studies. (4) noncardiac medical conditions as their primary diagno-
sis such as metastatic cancer.

RESULTS Intervention Characteristics

In all the selected studies,12-17 multidisciplinary team-based
Study Characteristics PC interventions were devised within inpatient or outpatient
Among all selected RCTs, except for 1 study conducted in settings. In inpatient settings,13,14 PC specialists (physician
Hong Kong,12 most of the studies were conducted in Western board-certified in palliative medicine, certified PC nurse

TABLE 1 Methodological Quality Assessment of Selected Studies

Risk of Bias
Blinding of
Random Participants Blinding of Incomplete
Author, Sequence Allocation and Outcome Outcome Selective Other
(Year) Generation Concealment Personnel Assessment Data Reporting Bias
Brännström Unclear Low High High Low Low Low
et al,
(2014)17

Bekelman Low Low High High Low Low Low

et al,
(2015)15

Hopp et al, Unclear Unclear High Low Low Low Low

(2016)13

Rogers et al, Low Unclear High High Low Low Low

(2017)16

Sidebottom Unclear Unclear High High Low Low High

et al,
(2015)14

Wong et al, Low Low High Low Low Low High

(2016)12

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TABLE 2 Summary of Studies Regarding Palliative Intervention and Key Outcomes for
Patients With CHF
Author, Study Participants
(Year), Eligible Disease Contents of Provider of Key Outcomes
Country Characteristics Intervention Intervention (Measurement Tools)
Inpatient

Hopp et al, Prognosis 1-year Specialty PC consultation Physician Advanced NP Not significant differences
(2016),13 mortality risk of ≥33% Symptom assessment As needed: Chaplain, between groups in hospice
United States (EFFECT score) HF Advance care planning social worker use, creation of DNR order,
severity NYHA class III or Assessment of goals of care, survival
IV EF: 38.8% ± 16.7 code status, desired
posttreatment residential
setting

Sidebottom Prognosis Not Specialty PC consultation PC physicians Certified Significant improvement in

et al, determined to be Symptom assessment PC CNS Social worker QOL (MLHFQ), symptom
(2015),14 actively dying HF severity (emotional, spiritual, Chaplain burden (ESAS), depression
United States Not reported psychosocial) Coordination of (PHQ-9), advance care
care orders Recommendation planning completion Not
for treatment change Referral significant improvement in
Future care planning hospice use, 30-day
assessment hospital readmission

Outpatient

Bekelman Prognosis Not reported HF disease management Nurse coordinator Significant improvement in
et al, HF severity KCCQ Collaborative depression care Primary care physician depression (PHQ-9)
(2015),15 score < 60 intervention Behavioral Cardiologist Psychiatrist Significant decrease in
United States activation and antidepressant 1-year mortality Not
management Depression significant improvement in
educational video QOL (KCCQ), 1-year
Self-management education hospital readmission
Home telemonitoring and
self-care support Medication
reminders to promote
adherence Education about
HF and depression Medication
monitoring, dietary advice

Brännström Prognosis <1-year life Home visits, phone calls PC physician PC nurse Significant improvement in
et al, expectancy HF severity Assessment of patients' needs Cardiologist HF nurse QOL (EQ5D), proportion of
(2014),17 NYHA class III or IV (physiological, social, spiritual) Physiotherapist patients with improved
Sweden Identification of comorbidities Occupational therapist NYHA class Significant
Support for caregiver decrease in
hospitalizations, mean days
of hospital stay, cost Not
significant improvement in
QOL (KCCQ), symptom
burden (ESAS)

Wong et al, Prognosis ≤1 year life Specialty PC consultation PC nurse care managers Significant improvement in
(2016),12 expectancy HF severity (inpatient) Advance care with HF caring QOL (MQOL, CHFQ),
Hong Kong NYHA class III or IV EF: planning Symptom experience Trained symptom burden (ESAS)
39% ± 14 assessment Support for nursing student Significant decrease in
caregiver Home visits, phone volunteers Supported by: hospital readmission
calls (home) Set mutually PC physician Social Significant higher
agreed care plan (physical, worker satisfaction with care
social, psychological, spiritual)
Assessment of need for
referral
(continues)

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TABLE 2 Summary of Studies Regarding Palliative Intervention and Key Outcomes for
Patients With CHF, Continued
Author, Study Participants
(Year), Eligible Disease Contents of Provider of Key Outcomes
Country Characteristics Intervention Intervention (Measurement Tools)
Rogers et al, Prognosis 6-month Usual HF care (inpatient) Certified PC NP PC Significant improvement in
(2017),16 mortality risk of >50% Symptom relief treatment of physician Trained QOL (KCCQ, FACIT-Pal),
United States (ESCAPE score ≥ 4) HF comorbidities Patient counselor Cardiology depression (HADS), anxiety
severity NYHA class EF education (self-management) team (cardiologist, NP) (HADS), spiritual well-being
mentioned but not Specialty PC intervention As needed: Mental (FACIT-Sp) Not significant
reported (outpatient) Symptom health provider improvement in HF-related
assessment and management rehospitalization, mortality
(physical, psychosocial,
spiritual) Assessment of goals
of care Address end-of-life
preparation Advance care
planning

Abbreviations: CHF, congestive heart failure; CHFQ, Chronic Heart Failure Questionnaire; CNS, clinical nurse specialist; DNR, do-not-resuscitate; EF, ejection
fraction; EFFECT, Enhanced Feedback for Effective Cardiac Treatment; EQ5D, EuroQol 5 Dimensions Questionnaire; ESAS, Edmonton Symptom Assessment
Scale; ESCAPE, Evaluation Study of Congestive Heart Failure and Pulmonary Artery Catheterization Effectiveness risk; FACIT-Pal, Functional Assessment of
Chronic Illness Therapy-Palliative Care; FACIT-Sp, Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being; HADS, Hospital Anxiety and Depression
Scale; HF, heart failure; KCCQ, Kansas City Cardiomyopathy Questionnaire; MLHFQ, Minnesota Living With Heart Failure Questionnaire; MQOL, McGill Quality of
Life Questionnaire; NP, nurse practitioner; NYHA, New York Heart Association; PC, palliative care; PHQ-9, Patient Health Questionnaire-9; QOL, quality of life.

practitioner, and PC clinical nurse specialist) employed at the intervention team. In addition, two of the studies pro-
the institution provided PC consultation, mainly assessing vided an intervention for depressive symptoms supported
various aspects of the symptoms—physical, emotional, psy- by a psychiatrist. Bekelman et al15 provided home-based
chosocial, and spiritual aspects—and establishing goals of self-care support services for patients through remote mon-
care or future care planning. In 1 study conducted by itoring, including medication reminders and monitoring,
Sidebottom et al,14 the PC team made recommendations and education about the disease. Rogers et al16 conducted
for change in treatment or referrals and provided coordina- patient education about self-management in inpatient
tion of care orders. Hopp et al13 assessed the preference for settings. Two of the studies described support for care-
discharge location after inpatient treatment. A chaplain and givers.12,17 Most of the studies conducted a discussion
a social worker were included in the PC team as needed. about goals of care or ACP.12-14,16
In the case of outpatient settings, including home and
outpatient clinics,12,15-17 most studies emphasized the com- Outcome Measurements and the Main Effects
prehensive approach between the cardiology team (cardi- The items measuring the effects of PC interventions ap-
ologist, HF nurse) and PC specialists (PC physician and plied to patients with HF included quality of life, symptom
nurse). In addition, psychiatrists, social workers, chaplains, burden, hospital readmission rate, the degree of ACP doc-
occupational therapists, and physiotherapists participated umentation, and mortality. A study measured the advance-
in team-based interventions if necessary. In 1 trial based ments in NYHA class to identify changes in HF-related
on the transitional PC model,12 a PC-certified nurse case functional levels before and after the intervention.17
manager, with experience of caring for HF patients, sup- Quality of life was measured in all selected studies
ported by a PC physician, performed a predischarge as- using the generally used scales such as EuroQol 5 Di-
sessment for patients and their families in inpatient settings mensions Questionnaire,17 McGill Quality of Life Ques-
and conducted setting care plans and assessments of needs tionnaire,12 and Functional Assessment of Chronic Illness
for referral by visiting the patients' home or conducting Therapy-Palliative Care,16 as well as the HF disease-
phone calls with trained nursing student volunteers after specific scales such as Minnesota Living With Heart Failure
discharge. The common roles of the nursing profession Questionnaire,14 Chronic Heart Failure Questionnaire,12 or
within the team included performing case management KCCQ.15-17 Among the disease-specific scales, KCCQ was
and coordination and comprehensively assessing and man- used most frequently. Most of the studies reported that
aging patient symptoms and palliative needs. Among se- the quality of life improved statistically significantly follow-
lected trials conducted in outpatient settings, three of the ing PC intervention.12,14,16,17
studies12,16,17 considered spiritual needs. Rogers et al16 eval- As for symptom burden, the Edmonton Symptom As-
uated spiritual well-being, and the details were shared with sessment Scale was used in 3 studies,12,14,17 and two of the

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studies reported that symptom burden was significantly Meta-Analysis Global Group in Chronic Heart Failure risk
decreased after the intervention.12,14 Three studies evalu- calculator, are commonly used, but they do not reliably
ated depression or anxiety using the Patient Health predict 1-year mortality at the population and individual
Questionnaire-914,15 or Hospital Anxiety and Depression level.19 Amid the difficulty of predicting the prognosis,
Scale16 to verify the effect on emotional symptoms, there is a large difference in perception between pro-
reporting improvement after intervention. In addition, viders and patients or between providers regarding the
1 study that measured spiritual well-being reported a sig- optimal timing of providing PC for patients with HF.20
nificant improvement 6 months after the intervention Therefore, the focus should be on the patients' experi-
using the Functional Assessment of Chronic Illness ence and individualized needs for PC, rather than making
Therapy-Spiritual Well-Being.16 In one of the studies, decisions based solely on the objective criteria.
changes in the functional level related to HF were mea- Routine screening of patient-reported outcome mea-
sured using NYHA, and improved results were reported sures (PROMs) can be helpful. The RCTs included in this
after PC intervention.17 review revealed the effectiveness of quality of life and
Hospital readmission rates were measured in 5 selected symptom burden by reporting the change in diverse
studies,12,14-17 and a significant decrease was reported in PROMs including the Edmonton Symptom Assessment
two of them.12,17 The mortality rate was measured in 3 stud- Scale, KCCQ, or Functional Assessment of Chronic Illness
ies,13,15,16 of which only one15 reported a significant de- Therapy-Palliative Care. However, they did not use PROMs
crease in the 1-year mortality rate. One study evaluated as participant selection criteria for PC intervention, except
whether an ACP was prepared, and a significant increase for 1 study. In clinical practice, validated PROMs or Needs
was reported within 6 months of the intervention.14 The Assessment Tool: Progressive Disease-Heart Failure, designed
use of PC services was measured in 2 studies,13,14 and a to be measured by the health care provider, can be useful.21
“do not resuscitate” order was assessed in 1 study,13 with In addition, 4 selected studies presented shared decision-
no significant change observed in any of the studies. making interventions, of which only 1 study reported a sig-
nificant improvement in the degree of ACP documenting af-
ter the intervention. Recent systematic reviews reported that
DISCUSSION the application of ACP was effective in the communication
This review reveals that the number of studies of the stron- satisfaction and advance directives documentation of pa-
gest methodological designs (ie, RCTs) has been increas- tients with serious noncancer illnesses including HF.22,23 It
ing, showing the effectiveness of the PC approach for pa- is necessary to use PC-shared decision-making tools, to take
tients with HF across the settings. However, recent studies a tailored approach to the needs of the patients.
consistently reported slow PC referral for patients with HF, In the selected studies, the location in which PC inter-
lower physical function, and higher hospital admission vention was provided varied from inpatient to outpatient
rates at the time of referral.8 This establishes the importance settings (eg, home, clinic). In particular, the relatively re-
of making decisions regarding the palliative approach in an cent RCTs analyzed in this review provided PC interven-
appropriate and timely manner. In this review, most of the tion in a mixed setting (inpatient to outpatient clinic or in-
selected studies considered life expectancy when deciding patient to home), emphasizing the importance of transi-
on referral to PC services, mainly for patients with a life ex- tional PC care for patients with HF. According to the latest
pectancy of 6 months to 1 year. In addition, the NYHA clas- large cohort study, the rate of hospital discharge referral to
sification and lowering of EF were used in most of the se- community-based PC is on the rise in the United States.24
lected studies as the criteria for subject selection. The NYHA, The RCT conducted by Bekelman et al,25 which was ana-
as a severity classification based on the subjective symptoms lyzed in this review, reported the effectiveness of home
of patients with heart disease, and the EF value—one of the telemonitoring intervention for HF symptom assessment.
markers of mortality, objectively indicating deterioration of In the latest RCT,25 the authors further developed a nurse-
cardiac function on the basis of ultrasound examination— and social worker–led PC telehealth intervention, which
can be used as useful reference points in deciding about was published after the literature search and analysis of this
a referral to PC in clinical environments. review. In another recently published RCT26 conducted by
In principle, PC should be provided on the basis of the Bakitas et al, the authors developed nurse-led, early PC tele-
needs of patients and their families, regardless of prognosis health interventions. Although both RCTs reported no signif-
or disease stage.10,18 In particular, nonhospice PC interven- icant effects of PC intervention on quality of life and mood,
tions are not provided only to terminally ill or end-of-life developing and evaluating community-based tele-PC inter-
patients.7 Above all, HF is a progressive condition, and ventions using innovative technologies are necessary to en-
it is difficult to accurately predict life expectancy due to sure the continuity and accessibility of universal PC services.
the disease itself or associated complications.4 Objective Team-based specialized PC interventions are reported
risk models, such as the Seattle Heart Failure Model or in all the selected studies. In addition, in all outpatient

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setting studies—except the studies on which hospital- studies may have important implications for the develop-
based specialized PC consultation interventions were ment of future trials. Moreover, the selected studies insisted
devised—integrated approaches between the primary PC on a multidisciplinary approach between PC specialists
providers (nonpalliative clinicians including a cardiologist, and primary PC providers, including cardiac nurses and ad-
HF nurse, advanced practice nurse) and the specialist PC vanced practice nurses. Thus, the results of this study can
providers were presented. A recent review reported that be used to advocate for the development of educational pro-
nurses can play a vital role in facilitating and supporting grams for various providers to implement team-based PC
the goals-of-care communication for seriously ill patients.27 interventions more sustainably and effectively. Finally, con-
However, several studies reveal that most primary PC pro- sidering the trend of increasing community-based PC ser-
viders, including nurses, have misconceptions of PC or have vice, trials that pursue innovative approaches such as
lower PC knowledge level.20,28 There is a need for strategic tele-PC must be further developed to verify the feasibility
and ongoing education of practicing nurses such as The and effectiveness of high-quality PC delivery.
End-of-Life Nursing Education Consortium.29 In addition,
it is necessary to develop interprofessional education cur- Acknowledgments
ricula for primary PC providers, who need to provide The authors thank the support from the Basic Science
adequate PC intervention for patients with HF, even Research Program through the National Research Foun-
without professional qualifications.7,30 dation of Korea, funded by the Ministry of Education
The NCP guidelines emphasize comprehensive assess- (2016R1D1A1B03934948).
ments of PC aspects.10 However, in this review, although
efforts to alleviate the burden of physical symptoms and
to assess psychosocial needs are reported in most of the se- References
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