Most 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 hoped-for 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end-of-life (EOL) care to critically ill children and their families in the PICU as life-sustaining therapies are withdrawn.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 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 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 decision-making 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 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).
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).
Specific comfort interventions such as the presence of others and spiritual/cultural observances are important choices to be honored when planning for WOLST (16). Evidence indicates parents’ preference a shared approach to decision-making, and despite the intense emotions, parents actively participate in decision-making in order to protect their child from suffering during the dying process (17). Throughout the decision-making processes, the PICU team should work to ensure that families do not perceive that they are alone in making these decisions and that adequate supports are matched to the family’s desired role in the process (3).
Control of the timing of the child’s death can be achieved in some contexts of WOLST. Time can be experienced differently between parents and clinicians with family being orientated to the moment and the critical care team taking on a future-oriented stance (8). Approaches to building a timeline for WOLST may often vary among persons, teams, local practice, and process; however, engaging the child and family whenever possible is essential. Fear of extending the child’s suffering can influence timing for WOLST. Reassurance of the child’s comfort and dignity is the goal of each action and decision.
There are also situations where there is little time to develop a plan with the family, such as when the child’s clinical condition is evolving and withdrawal may occur in a short timeframe. In these contexts, skillfully eliciting immediate needs (parental and sibling presence, important rituals like baptism/prayers), providing assurances that the child’s needs are being met, immediate activation of supportive resources (child life, 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 family groups on or near the unit, organizational policies related to visitor admittance to the area, age restrictions for visitors, and control of access to care areas can all influence the team’s ability to maximize family presence (21). These same environmental factors can make preserving privacy for the child and family and other children in the same care areas difficult. Shared rooms and areas designed to optimize patient observation limit private spaces for families anticipating WOLST. Others in the immediate areas may be unintentionally exposed to the grieving family’s experience. Organizational restrictions, such as the use of cameras and videos in shared spaces, may interfere with memory-making activities. The PICU team must be creative in order to define a private space for the child and family. Simple strategies include the use of privacy curtains, mobile wall barriers, posting signs to limit unnecessary entry into the room, and attention to reducing sound interruptions (22). Moving a child to a more private space is an option and may mitigate some of these issues; however, a move may have negative connotations for families. Family may prefer to remain in a familiar room, or they may be concerned about being isolated from the team or other families. Some PICUs have preferred or designated rooms for EOL care. These rooms have features to support family comfort, sibling presence, religious and spiritual rituals, and many have relaxed visiting protocols.
Consideration to the space must also be given in terms of what might be required to continue PICU support should the child survive after WOLST. Preemptive explanations about what care will look like in the new area including access to the team, orientation of the family to the room, and assurance 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, 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 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).
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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