Logistics of Withdrawal of Life-Sustaining
Therapies in PICU
Karen Dryden-Palmer, RN, MSN1,2; Cathy Haut, DNP, CPNP, FAANP3;
Samantha Murphy, RN, MANP, PGDip Nursing Practice4; Patricia Moloney-Harmon, RN, MS, CCNS, FAAN5
Objectives: To describe practical considerations and approaches
to best practices for end-of-life care for critically ill children and
families in the PICU.
Data Sources: Literature review, personal experience, and expert
opinion.
Study Selection: A sampling of the foundational and current
evidence related to the withdrawal of life-sustaining therapies in the context of childhood critical illness and injury was
accessed.
Data Extraction: Moderated by the authors and supported by lived
experience.
Data Synthesis: Narrative review and experiential reflection.
Conclusions: Consequences of childhood death in the PICU
extend beyond the events of dying and death. In the context
of withdrawal of life-sustaining therapies, achieving a quality
death is impactful both in the immediate and in the longer
term for family and for the team. An individualized approach
to withdrawal of life-sustaining therapies that is informed by
empiric and practical knowledge will ensure best care of the
child and support the emotional well-being of child, family,
and the team. Adherence to the principles of holistic and
compassionate end-of-life care and an ongoing commitment
to provide the best possible experience for withdrawal of lifesustaining therapies can achieve optimal end-of-life care in
the most challenging of circumstances. (Pediatr Crit Care
Med 2018; 19:S19–S25)
1
Department of Critical Care Medicine, The Hospital for Sick Children,
Toronto, ON, Canada.
2
Child Health Evaluative Sciences, Research Institute, The Hospital for
Sick Children, Toronto, ON, Canada.
3
Mednax-Pediatrix Medical Group, Nemours AI Dupont Hospital for Children, Wilmington, DE.
4
Paediatric Intensive Care Unit, Royal Children’s Hospital, Melbourne,
VIC, Australia.
5
Children’s Services, Sinai Hospital of Baltimore, Baltimore, MD.
The authors have disclosed that they do not have any potential conflicts
of interest.
For information regarding this article, E-mail:
[email protected]
Copyright © 2018 by the Society of Critical Care Medicine and the World
Federation of Pediatric Intensive and Critical Care Societies
DOI: 10.1097/PCC.0000000000001621
Pediatric Critical Care Medicine
Key Words: dying and death; end-of-life; intensive care; limitations
of therapies; pediatric critical care; withdrawal of life-sustaining
therapies
M
ost deaths in hospitalized children occur in the
PICU. Many of those deaths can be anticipated (1).
Acceptance of the inevitability of the child’s death
can lead to the active decision to influence the dying process by
withdrawing life-sustaining therapies (WOLST).
WOLST is the removal or discontinuation of life-sustaining
treatments or technology. The accepted rationale for WOLST is
that the ongoing use of life-sustaining interventions is of limited or no benefit to the child, is not aligned with the goals of
care for a child, and is thought to prolong the process of dying
in a way that is burdensome for the child and family (2–4).
WOLST is distinguished from withholding (i.e., not starting)
life-sustaining therapies, as discontinuation of these therapies
is planned (1, 5, 6). We will focus this discussion on WOLST
occurring in the PICU environment. WOLST occurring outside
the critical care environment is addressed in “Compassionate
Discharge from the PICU” in this supplement (7).
In our experience, clinicians describe that WOLST “feels”
unique and is experienced differently from other deaths in the
PICU. Decisions for WOLST in children often follow a change
in the direction of care and a change in the expected and hopedfor outcomes (8). Here, we describe practical considerations and
share strategies for providing end-of-life (EOL) care to critically ill
children and their families in the PICU as life-sustaining therapies
are withdrawn. The term “family” is used to describe the child’s
primary caregivers—this includes all relatives, legal, and other
guardians (9). Figure 1 describes the essential element of and recognized standards for EOL care that frame our discussion (10).
WOLST IN PICU
Withdrawal of life-sustaining interventions involves careful consideration for the proactive inclusion of EOL care and
decisions about when and how the withdrawal will occur. The
child and family should be well prepared, the environment
well organized, and care during and after WOLST carefully
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Dryden-Palmer et al
Figure 1. Five core elements of end-of-life care (10).
considered. Four phases of WOLST are described, exploration of preferences and feasibility, planning, enacting WOLST,
and care after WOLST. These phases frame our approach to
describing the guiding principles and practical interventions
for compassionate EOL care. Examples of interventions for
achieving individualized quality EOL care in each phase are
summarized in Table 1.
EXPLORING WOLST PREFERENCES AND
FEASIBILITY
Once a determination has been made to pursue compassionate WOLST, the ICU team should begin preparatory activities.
The PICU team should clarify who is included as “family” as
per the family’s own understanding and how they wish to be
engaged in the process. Open and authentic support of the
family’s decisions is important in order to demonstrate respect
for family relationships and for parental authority. Clinicians
must ensure adequate supports are matched to the family’s
desired role in decision-making about the process of WOLST
(3). Facilitating family presence, encouraging spiritual and
emotional expression, and matching the tone of care to the
family and to the situation encourage trust and help to establish strong therapeutic connections prior to the acts of WOLST
(10). Establishing a consistent group of familiar clinicians
including the child’s primary team members can help to establish these important therapeutic relationships, offer extended
support, and facilitate transparent information sharing (11).
Revisiting family perceptions and their understanding during each phase can ensure that information has been effectively
taken up. Careful and clear articulation of the steps in WOLST
and how goals of care will be supported can help mitigate family concerns or feelings of inadequacy or abandonment of their
child.
Assisting the family to reflect on the child’s preferences is
an important component of WOLST preparation. The PICU
team should consider disclosure of the WOLST to the child,
their siblings, and others early in this process, ensuring that
the child has a voice in decision-making, either via surrogate
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or directly from the child. The
integration of siblings and
extended family/friends should
be addressed and resolved during this preparation phase.
The PICU team can provide
guidance and resources in this
phase to address the child’s
level of engagement and support the family in decisionmaking around this aspect of
preparation.
Where and when WOLST
will take place are decisions to
be considered in preparation.
Responding to family consideration for timing and setting
realistic expectations of the
process for WOLST promotes a sense of shared purpose and
supports the exploration of concerns. Ideally, timing of WOLST
allows for desired family experiences or activities to occur in the
context of the child’s condition. Family may wish to experience a
religious or culturally relevant occasion together, take their child
outside, or celebrate an important family milestone while their
child is able to be involved and present. These activities contribute to the child’s legacy and the family’s story and support connectedness to their community (10).
Open-ended question about who from the family will be present and what roles individual family members may play in the
child’s care and death should be asked. There is no one best way to
approach a child’s WOLST; thus, family’s needs and strengths can
reflect a range of preferences. Understanding family preferences
and maximizing opportunities to spend time with their child
are key when there is some predictability in the situation. If the
situation is evolving or timing is uncertain (e.g., a cardiac arrest
may occur), the team should offer guidance about how WOLST
will proceed, how family can be present to support their child,
and how they can support one another. Some families may wish
to participate in all care activities, others may wish to observe,
and others may choose to be in a separate space during the withdrawal. Having a designated team member available to support
family in whatever way they choose to be present is an important
part of high quality care. Providing preemptive age appropriate
explanations and support for siblings by child life specialists or
social workers are recommended. Anticipatory guidance should
be provided for all family members who will be present to explain
about WOLST and how the child’s death may look, sound, smell,
and feel like.
Exploring with the family spiritual and cultural observances
and how these can be integrated in the context of the PICU are
essential. Pragmatic factors can make it difficult to meet these
observances, and the PICU team may need to manage resource
limitations, distance of family members, or the child’s evolving
condition. We make it our practice however to explore each
request, challenge our abilities to be creative, engage the organization’s resources, and provide clear explanations as to what
August 2018 • Volume 19 • Number 8 (Suppl.)
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Supplement
TABLE 1. Phased Goals and Actions for Withdrawing Life-Sustaining Therapies in Pediatric
Intensive Care
Phases
Exploring
WOLST
preferences
and feasibility
Guiding Principles
Individualized care
Respect for person
and family
integrity, culture
and traditions
Goal(s)
Actions
Assessment of
family/child
needs and
exploration of
preferences
Clarify understanding of goals of care
Set supportive and
matched tone
Explore family and child preferences for when, where, and who will
be present for WOLST
Anticipatory
guidance of
WOLST process
Explore cultural and spiritual needs
Surface concerns and questions, clarify misinformation
Explore disclosure to child and others
Invite the participation of spiritual advisor as per family and child
preferences
Explore organ and tissue donation preferences
Anticipatory
guidance
Set expectations of
process and the
experience
Provide anticipatory guidance about sights sounds, smells,
physiologic changes/responses of the child; what to expect
before during and after WOLST; potential parental physical and
emotional responses
Discuss and clarify roles of family and team members
Discuss sibling needs and engagement—engage child life
specialists
Identify and activate resources (family, organization, external)
Planning for
WOLST
Balance family
preferences
and practical
considerations
Balance privacy
with access to
support
Flexible responsive
plan of care
Determine a time for WOLST that meets the family and child’s needs
Establish timing of
actions
Design communication plan
Determine
environment and
roles for WOLST
Select a room or space for WOLST
Provide guidance for what to do if one feels overwhelmed/unwell
Identify space outside of the child’s room for family
Plan provider presence/access
Maintain level of
care
Plan for
contingencies in
child’s condition
Plan for ongoing care and symptom management
Engage palliative care specialists
Design monitoring plan
Determine actions should a condition change occur and the child
deteriorates prior to WOLST
Determine a plan for survival to transition from PICU
Support meaning
making for the
child and family
Action spiritual,
cultural, and
family rituals
Discuss how to say goodbye (legacy-building activities)
(see Fig. 2)
Plan cultural and family rituals that will be a part of the WOLST
procedure (e.g.) obtaining a large bed, so family can lay close to
the child
(Continued)
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TABLE 1. (Continued). Phased Goals and Actions for Withdrawing Life-Sustaining
Therapies in Pediatric Intensive Care
Phases
Guiding Principles
Carrying out
WOLST
Best care of child
and family
Goal(s)
Actions
Plan for comfort,
safety, and wellbeing of child
and family
throughout
process
Implement monitoring plan
Support family presence as per family preferences
Dress the child in his/her own clothing, use familiar hygiene products,
assist family members to hold and connect with their child
Provide privacy while remaining accessible—interval check-ins
Designate a team member to assist with flow of visitors and to
enforce safe use of the allotted space
Respond promptly
for changes in
child’s condition/
needs
Provide information and interpretation of child’s condition and responses
Maintain open
communication
Implement communication plan
Implement care and symptom management plan
Provide familiar care givers
Frequently reassess child and family needs and address any
concerns arising
Inclusive
approaches
to addressing
concerns/clinical
challenges
Engage family in
care as per their
preference
Support family care giving/roles
Frequently reassess child and family needs and address any
concerns arising
Ensure space is available for larger groups and for those who wish
to be near, however not present in the child’s room
Provide support for emotional distress
After WOLST
Best care of child
and family
Maintain supportive
environment
up to and after
death
Continue supportive care and symptom management for child
Frequently assess child’s condition adapt plan of care accordingly
Provide guidance/interpretations of the sights sounds, smells,
physiologic changes/responses of the child
Facilitate family members to meet their personal needs (rest/food)
Provide positive reinforcement of family role and impact on child
Honor family culture
and traditions
Engage family in
after death care/
decision-making
Provide support for and facilitate after death rituals
Transition family
and support
bereavement
Support meaning
making for the
child and family
Provide guidance about next steps
Provide anticipatory
information
Ensure family has team contact information
Initiate referrals for after care as needed
WOLST = withdrawing life-sustaining therapies.
can and cannot be accomplished. In cases where family preferences are not realized, sincere attempts to accommodate these
wishes can reassure the family that they were heard, understood, and advocated well for themselves and their child (12).
Exploration of organ and tissue donation preferences
(legislated in some jurisdictions) may be initiated in this
phase and may potentially influence other planning decisions (timing and place of WOLST for donation after circulatory death) (13, 14).
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PLANNING FOR WOLST
WOLST requires careful planning, ongoing assessment, adaptation and continuity of care extending beyond the actions of
the withdrawal itself. Planning should always consider each
potential trajectory for the child including an immediate death
and the potential for longer survival. The involvement of palliative care specialists is advisable before withdrawal if it seems
likely that the child will survive long enough to consider PICU
discharge (7, 15).
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Supplement
chaplaincy), seeking creative
ways to connect family (internet contact with remote family), and following through
with deferred requests after the
child’s death (creating legacy
items after death) are ways of
providing quality EOL care
within a potentially restricted
timeframe (18). Figure 2 lists
a sample of these activities
that can be helpful for families
anticipating or experiencing
bereavement (19, 20).
It is not surprising that the
PICU environment designed
to deliver constant and intense
monitoring can also pose challenges for WOLST. Barriers to
family presence may include
the available space, workflow,
and organizational policy.
Physical space for family at the
child’s bedside, availability of
facilities to house larger famFigure 2. The creation of memories and mementos can be an important and enduring part of end of life care.
ily groups on or near the unit,
The figure includes list of potential items and activities that may be incorporated into care in the PICU.
organizational policies related
to visitor admittance to the
Specific comfort interventions such as the presence of others
area, age restrictions for visitors, and control of access to care
and spiritual/cultural observances are important choices to be areas can all influence the team’s ability to maximize family
honored when planning for WOLST (16). Evidence indicates presence (21). These same environmental factors can make preparents’ preference a shared approach to decision-making, serving privacy for the child and family and other children in
and despite the intense emotions, parents actively participate
the same care areas difficult. Shared rooms and areas designed
in decision-making in order to protect their child from sufferto optimize patient observation limit private spaces for famiing during the dying process (17). Throughout the decision- lies anticipating WOLST. Others in the immediate areas may
making processes, the PICU team should work to ensure that be unintentionally exposed to the grieving family’s experience.
families do not perceive that they are alone in making these Organizational restrictions, such as the use of cameras and
decisions and that adequate supports are matched to the famvideos in shared spaces, may interfere with memory-making
ily’s desired role in the process (3).
activities. The PICU team must be creative in order to define a
Control of the timing of the child’s death can be achieved in private space for the child and family. Simple strategies include
some contexts of WOLST. Time can be experienced differently the use of privacy curtains, mobile wall barriers, posting signs to
between parents and clinicians with family being orientated to
limit unnecessary entry into the room, and attention to reducthe moment and the critical care team taking on a future-ori- ing sound interruptions (22). Moving a child to a more priented stance (8). Approaches to building a timeline for WOLST
vate space is an option and may mitigate some of these issues;
may often vary among persons, teams, local practice, and pro- however, a move may have negative connotations for families.
cess; however, engaging the child and family whenever possible
Family may prefer to remain in a familiar room, or they may be
is essential. Fear of extending the child’s suffering can influence
concerned about being isolated from the team or other families.
timing for WOLST. Reassurance of the child’s comfort and dig- Some PICUs have preferred or designated rooms for EOL care.
nity is the goal of each action and decision.
These rooms have features to support family comfort, sibling
There are also situations where there is little time to develop
presence, religious and spiritual rituals, and many have relaxed
a plan with the family, such as when the child’s clinical con- visiting protocols.
Consideration to the space must also be given in terms of
dition is evolving and withdrawal may occur in a short timewhat might be required to continue PICU support should the
frame. In these contexts, skillfully eliciting immediate needs
child survive after WOLST. Preemptive explanations about
(parental and sibling presence, important rituals like baptism/
prayers), providing assurances that the child’s needs are being what care will look like in the new area including access to the
met, immediate activation of supportive resources (child life, team, orientation of the family to the room, and assurance
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Dryden-Palmer et al
about the continuation of the same level of care should be
provided prior to moving the child. Sometimes family preference is to return to a familiar ward area or to return home for
WOLST, and in these cases, compassionate PICU discharge is
pursued (7).
It can be difficult to balance a relaxing of organizational
restrictions for family presence for one child while maintaining
policy with other children and families in the area. Similarly,
it is often challenging to protect other children and families
from noticing the change in the dying child’s direction of care.
Responding to questions from other families or aware patients
can be challenging. Respecting and protecting the privacy of
the dying child are imperative when responding. This respect
should be coupled with sensitivity to the concerns and fears of
others who may be impacted by exposure to WOLST activities
and address their unique needs for support.
Meticulous communication with the dying child's family
and working through the anticipated and unanticipated clinical needs of the child provide important support and reinforce
the team’s continued engagement (3). A plan of care for the
child addressing symptom management, ongoing medical
care, responses to potential complications or events related to
WOLST should be created and shared among the team and
family (23). Ready access to medication and interventions
that support the child’s comfort before beginning WOLST is
important in order to expedite responses to the child’s changing needs. Monitoring plans should be congruent with the
goals of care.
Legacy-building activities and any cultural and family rituals in this plan, especially any that will be a part of, or concurrent to the WOLST (e.g., prayers or blessings), are designed
in this phase (18). PICU teams should review and revise the
plan frequently and ensure flexibility to modify approaches as
WOLST proceeds and the child’s clinical condition progresses.
In our experience, careful communication and check-ins coordinated through a central/core leader on the child’s team are
efficient mechanisms to achieve this.
CARRYING OUT WOLST
When moving to WOLST, goals for care shift to providing
comfort and symptom management for the child and emotional support for the child and family. Areas of action include
the child’s physical care, managing the environment, supporting the emotional needs of child and family, and reassessing for
impact of the interventions.
Plans for managing the child’s symptoms (pain, anxiety,
and dyspnea) are acted on in this phase. Considerations for
nonpharmacologic comfort interventions, such as music, massage, holding, or other comforting activities that the child
responds to, are essential. Acting on the communication and
monitoring plans and delivering the required care (e.g., suctioning or infusions) are ongoing in this phase. Families need
to observe that removal of life-sustaining therapies is grounded
in best care and not abandonment or surrendering the child to
death. Providers should anticipate and take action related to
the specific procedures for each child’s WOLST (extubation,
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decannulation) and minimize exposure to distressing or
unpleasant sensory experiences.
The PICU team leads in managing the care space and monitoring family presence to ensure the child’s safety and security. When family is present during WOLST, providers should
remain alert for signals that the family is becoming overwhelmed. If possible, arranging for alternative space away from
the child for parents, siblings, or other family members to take
a break can be helpful.
Supporting the family to be as present with their child as
they desire and respecting family roles and cultural expectations are goals during WOLST (22). Family questions should
be encouraged to address any misconceptions. Parents should
be supported to connect to their child in whatever capacity
they wish and are able (21). They should have explanations of
what the child may hear or experience, and parents should be
told of the positive impact they have on their child. The family should be aware of available resources and have easy access
to these. If extreme distress is experienced, it can be managed
with the addition of social work, crisis support, and spiritual
support or activating community resources.
If time permits and the family desires, active legacy building
can be pursued in this phase. Many PICUs have legacy programs to create tangible memory items (hand and foot casts,
prints, locks of hair, photos, arm bands). It is also important
to remain aware of the experience and needs of providers.
WOLST is challenging to coordinate, demanding of individuals, and emotionally fatiguing.
AFTER WOLST
After WOLST has taken place, ongoing adaptations to meeting the child’s physiologic needs in the dying process and activating ongoing support for family become the focus (24, 25).
When WOLST results in the child’s continued survival for an
uncertain length of time, the action plans designed during the
WOLST should be continued. Palliative care specialist, if not
already involved, should be consulted to facilitate transition if
the child is expected to survive to require care outside of the
PICU setting. The timing of transitioning the dying child to
the ward, hospice, or home should be considered as aligned
with the preparatory and planning discussions for each individual child (26).
When WOLST results in the child’s immediate or approaching death, the PICU teams should facilitate family, spiritual,
or cultural rituals requested for the time of death. It is very
important that the time of death is marked, and the condolences of the team and individual clinicians be shared with the
family (27). PICU providers should work with the family to
engage them in the child’s after death care according to their
desires and preferences and arrange for them to spend time
with the child after death if they wish to (10). Information and
guidance about next steps in terms of their child’s body care,
funeral planning, autopsy, and release of the child’s remains
should be provided (21). Ensure that family has contact information for key members of the PICU team prior to leaving the
hospital (28, 29).
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Supplement
CONCLUSIONS
The experience of childhood death deeply impacts the family and may result in complicated grief (30, 31). Consequences
for the child, family, and providers extend beyond the events
of dying and death. Emphasis in the PICU is often placed on
the short-term issues and needs of the child and family in the
context of WOLST, but successfully implementing a quality
death is impactful both in the immediate and in the longer
term for family and for the team. An individualized approach
to WOLST that is informed by empiric and experiential knowledge will alleviate physical and emotional suffering and support spiritual health for all parties. There are no established
best ways to navigate the discrete elements of WOLST (family presence, approaches to decision-making, sibling engagement). However, taking an interest in exploring preferences
and making a firm commitment to providing the best possible experience for the child and family can achieve optimal
EOL care in the most challenging of circumstances. Care that
provides the right skills at the right time, excellent transparent
communication, compassion and flexibility are the hallmarks
of well-executed WOLST.
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