This article explores death and end-of-life (EOL) care in PICUs specifically in the setting of ongoing life-saving or life-prolonging interventions. In relatively resource available PICUs, advances in treatment of critically ill children have led to greater than 97% survival (1). In the context of this relatively low mortality rate, PICU clinicians and families may choose to remain focused on life-saving goals even when the child is facing a poor prognosis and high risk of death (2). This focus on curative goals not uncommonly inhibits provision of high-quality EOL care (3).
In this article, we describe three common clinical scenarios when curative goals of care are pursued despite a high likelihood of death and explore the challenges to providing high-quality EOL care in each setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the EOL in this setting.
THREE COMMON CLINICAL SCENARIOS
Unlimited Life-Support Efforts—Family and Medical Team Agreement
In this first scenario, deaths occur in the setting of unlimited life-saving interventions with the family and medical team in agreement about the goals of care. The highest levels of life support available are employed with the goal of saving or prolonging the life of the child. Even with a recognized high risk of death, concurrent EOL care interventions or palliative care consultation may not be considered, may not be welcome, or may simply be logistically impractical. As such in this setting, comfort, the family-child connection, and EOL wishes may not be prioritized during the dying process. Death commonly occurs after unsuccessful cardiopulmonary resuscitation (CPR).
Some Limitation of Life-Support Efforts—Family and Medical Team Agreement
In this second scenario, deaths occur after withdrawing or forgoing some, but not all, potentially life-saving interventions. With increasing certainty of a poor prognosis and likelihood of death, the family and the medical team are in agreement about the decreasing benefits and increasing burdens of certain life-support interventions. Frequent communication allows for the continual reassessment of goals of care as the course of disease progresses. EOL care practices and palliative care consultation may or may not be merged concurrently with life-prolonging and attempted curative interventions.
The perceived discordance of continuing some, but not all forms of life support, may be unsettling. In addition, prognostic uncertainty, shifting goals of care over time, differing clinical opinions, and a prolonged length of stay may lead to feelings of distress among some medical team members. Clinician distress may decrease the quality of care provided for the child and their family.
Ongoing Life-Support Efforts—Family and Medical Team Disagreement
In this scenario, the family and the medical team are not aligned regarding goals of care. In recent decades, most commonly the family requests continued life-prolonging therapies despite great certainty in a poor prognosis and high likelihood of death. Despite strong recommendations from the medical team to forgo or withdraw life support, the family typically requests that “everything be done” to prolong life (4–6). In the setting of increasingly polarized disagreement about the goals of care, some degree of conflict is likely to arise between stakeholders which may detract from optimizing EOL care. In some cases, the medical team may consider unilateral limitations of certain interventions (e.g., surgeries, extracorporeal life support [ECLS], CPR). This authority to unilaterally limit life-support efforts varies by country, region, and even institution (7, 8). Under other circumstances, families maintain decisional authority to continue life support which may contribute to medical team distress (9).
REASONS PARENTS MAY CHOSE TO PURSUE ONGOING LIFE-SUSTAINING EFFORTS DESPITE POOR PROGNOSIS
In the setting of critical childhood illness, families often prefer to continue or escalate life-support measures for their child even in the setting of a poor prognosis, as childhood death is uncommon and even unfathomable for many parents. In order to optimize EOL care under these circumstances, critical care clinicians have a duty to explore the reasons families choose to request ongoing life-support measures. Understanding hopes, fears, and goals enables clinicians to align with families when complicated decisions are made. Otherwise, conflict may arise, which may lead to distraction from providing high-quality EOL care (10).
More Time for Decision-Making
Often families simply need more time to process and acclimatize to the information they receive, time to discuss the situation with other family members, staff members, religious leaders, or obtain second opinions. The irreversibility of the decision to limit or withdraw life-sustaining therapies is a powerful factor that drives most families to desire time to seek assurance, reflect, and clarify options (11, 12).
More Time With Child
Often families understand and accept the inevitability of death but request the continuation or escalation of life support in order to have more time with their child. Families have expressed the importance of even a few more hours, days, or weeks spent with their child in creating meaning and closure (4). Sometimes there may be a desire to coordinate around significant family occasions or to give others time to visit their child (13).
Cultural and Religious Values
Some families request to continue life support to be consistent with their values, beliefs, or faiths that life support should not be withdrawn (14–16).
Values and Perspectives on a “Good Death”
Some families may define a “good death” as the minimizing of suffering and seek a peaceful death by choosing to withdraw life support when the inevitability of death becomes relatively clear and the burdens of life support outweigh the benefits. For other families, a “good death” may be characterized by “never giving up,” “letting God decide,” “trusting in a miracle,” or “fighting the good fight.” Families often seek the death “story” that is most consistent with their values to minimize regret in the decades that follow (4, 16).
Uncertainty in Prognostication
Prognostic uncertainty is common in the critical care setting (17, 18). Families may request to continue life support in the face of real or perceived prognostic uncertainty. The family’s perception of uncertainty may be exacerbated by the complexity of PICU medical teams, actual and perceived conflicting messages, or poor intrateam communication or conflict. Previous medical conversations or personal healthcare experiences predating the critical illness or incidents where their child, another family member, or friend survived life-threatening illness, may also influence the decision to prolong life support.
Perception of Parental Role
The parent-child relationship is incredibly complex and intimate (19). How parents define their role as a “good parent” often influences how decisions are made (18). In general, there is a deep innate parental need to advocate for and protect their child from harms (10). For some parents, this protection takes the form of withdrawal of life support and transitioning to comfort care to prevent further suffering in the face of a poor prognosis (20, 21). For others, this deep need to protect one’s child takes the form of never “giving-up,” never stop fighting for life, and giving the child every chance for survival. When their child dies, parents carry the moral burden of their actions through their life.
Perception of the Do Not Resuscitate or Limitation Order
Some families may hesitate, resist, or refuse to formalize limitations of life support including enacting a do not resuscitate (DNR), even when they accept that death is likely. Sometimes families fear that a DNR or other explicit limitations will result in a withdrawal of caring or investment by the medical team. Families may fear that beneficial life-prolonging therapies may not be offered, or that acute, reversible events may not be addressed.
Unclear Communication From Clinical Team
Families may find it difficult to choose to withdraw or limit life support without consistent reassurance, guidance, or explicit recommendations from trusted clinicians. Well-meaning clinicians may offer interventions that are unlikely to change the outcome in order to “offer something” or to gain time to “bridge to a decision.” These interventions are often perceived as potentially beneficial by the family, making it very difficult for the family to refuse. Other times, clinicians may unintentionally avoid discussing, considering, or recommending palliative goals due to the fear of taking away hope, disappointing the family, or concerns about personal failure as clinicians. The lack of explicitly exploring the potential option of transitioning toward comfort care with the family may lead to unnecessary prolongation of life-sustaining therapies where families feel powerless to express their potential desire to prioritize their child’s comfort.
Lack of Trust in Medical Team
Families who do not trust the medical team are unlikely to choose withdrawal of life support when informed of the likelihood of poor prognosis. Trust may be hard to attain in the setting of large, complex PICU teams with multiple layers of clinicians, frequently rotating team members, and subspecialty team involvement. Furthermore, trust may be lost due to previous communication “failures,” family-medical team conflicts, intrateam conflicts, previous therapy complications or errors, or previous perceived or actual prognostication “failures.” Factors such as race, socioeconomic disparities, language barriers, and cultural and religious differences can further influence families’ trust of the medical team (22).
SEEKING A DEEPER UNDERSTANDING OF “DO EVERYTHING”
It is not uncommon for families under the duress of a critically ill child with a poor prognosis to request “everything be done” to save their child. “Do everything” often does not necessarily literally mean do everything medically possible. Rather this statement should be interpreted as an opportunity to explore the family’s perspective, values, hopes, fears, and wishes more carefully (4–6). An in-depth exploration often reveals complexities and nuances of meaning that allow for titration of a reasonable medical approach that aligns with the family’s needs and expectations. Furthermore, multiple conversations over time exploring the family’s perspective are important as the meaning of “do everything” for the family may change as the child’s illness progresses.
REASONS CLINICIANS MAY BE UNCOMFORTABLE WITH CONTINUING LIFE-SUSTAINING EFFORTS IN THE SETTING OF POOR PROGNOSIS
For a variety of reasons, it is not uncommon for PICU clinicians to experience distress in continuing high-intensity interventions when a child’s prognosis is poor (23, 24). Distress or frustration may be greater in clinicians who have not been actively engaged in decision-making and have “inherited” a medical plan that they would not have made if they had decisional authority. It is important for clinicians to explore the reasons behind their feelings and for institutions to understand clinician distress in order to promote resilience, support clinicians, and reduce conflict (25).
Clinician Views of “High-Quality” Death
Individual clinician views of what constitutes a “high-quality” death are influenced by personal values as well as past clinical experiences (26). For clinicians who view a high-quality death as a peaceful death in the setting of compassionate withdrawal of life support with adequate sedation and analgesia in the arms of the family, a death on life support or after failed CPR may be unsettling, viewed as suboptimal or even an act of harm (27).
Competing Clinical and Moral Obligations
Clinicians, particularly in pediatrics, have multiple obligations in the provision of medical care. Often, the primary obligation is to the patient, however other important obligations are to the family, other clinicians, the institution, self, the profession, and even the greater good of society. Clinicians may develop distress if they perceive that the prolongation of life support for a patient with a poor prognosis is in conflict with their other obligations.
Discomfort With Uncertainty, “Gray Zone” or Lack of Clarity in Care Plan
Often, children who die in the PICU on life support have a plan of care that changes daily, if not hourly, based on the progression of life-limiting illnesses. Under some circumstances, integrating the complexity of the disease process and advanced therapies with the family’s values and goals can lead to care plans that may be perceived to have competing goals. This is especially true when care plans include ongoing life support as well as palliative care, such as optimizing comfort and limiting escalation of interventions, such as CPR, ECLS, or dialysis. The complexity and nuances of these types of care plans may create discomfort for clinicians.
Disagreement With Family Decision or Values
Clinicians may have discomfort with prolonging life support when the family’s values or perspectives are not familiar to the clinician (26). This may be the case when racial, cultural, or religious differences are present. Implicit or explicit clinician bias may also be present. These differences are often exacerbated by the nature of the busy PICU environment that offers little time for clinicians to explore and better understand the family’s values and perspectives. In addition, lack of formal training in cultural humility and limited access to cultural navigators and interpreters can inhibit optimal clinician-family communication in this setting.
Discomfort With Prolonged Dying Process
Some clinicians may feel uncomfortable due to a sense of helplessness or powerlessness to change the course of illness or relieve the suffering of the child or family. Other clinicians may perceive the death of a child as a personal failure in their role to cure the child. Some clinicians may become impatient with a prolonged dying process for multiple reasons and may strongly desire more rapid resolution and closure.
Navigating dual goals of continuing life-saving efforts while simultaneously preparing for the possibility of death and optimizing EOL care has a number of challenges. Improving EOL care for children and families in this complex setting requires a flexible and skilled team who can recognize the nuanced needs of families and can customize an approach that best meets those needs in a way that prioritizes their values.
Methods to support the family in the dying, death, and bereavement process are described in the “logistics of withdrawal of life-sustaining therapies in ICU” article and should be employed for all deaths in the PICU when possible and appropriate. A few specific recommendations to improve EOL care in the setting of ongoing curative life-support efforts are listed here. Other recommendations can be found in Table 1.
Family-Clinician and Intrateam Communication
Optimal family-clinician and intrateam communication is critical to successfully navigating these challenging circumstances (29). Formal communication training of clinicians at the institutional level may improve the ability of clinicians to effectively communicate both with the family and with other clinical team members (30). Optimal communication requires prioritizing relationship and trust building with the family, frequent conversations, and careful listening to values and wishes (31, 32). Providing clinician continuity whenever possible may enhance the development of a trusting and therapeutic relationship with the family. Clinicians should be clear, consistent, transparent, and honest in their communication and not hesitate to offer families guidance and recommendations (33). This includes explicitly offering withdrawal of life support as an acceptable option when clinically appropriate. The family decision-making process should be slowed down as much as possible given the clinical circumstances to allow adequate time to consider options and make the best decision possible that ideally avoids decisional regret in the future (10, 34). Formal and consistent communication strategies with families may also decrease the burden of bereavement distress (35). Finally, frequent conversations with the entire medical team about shifting goals of care are critical in preventing confusion, distress, and conflict.
As children are not viewed in isolation from their family, support of the family is always important in the setting of pediatric critical illness. Families facing difficult medical decisions or experiencing any degree of conflict may require additional support (31). Early recognition of the benefits of using a multidisciplinary approach to optimize child and family support by including the expertise of additional services, such as palliative care, spiritual care, cultural patient navigators, child life (for patient and siblings), and social work, is encouraged. Seeking to reduce barriers that inhibit child and family connection and bonding, even in the setting of ongoing life-support efforts, is necessary as critical care interventions and ICU policies often restrict families’ access to their children. Establishing a flexible and open visitation policy for family members and exploring creative opportunities to promote family-child connection are often important (36). Furthermore, allowing for family presence at the time of CPR or other critical interventions is often beneficial (37, 38).
Clinician Training, Support, Introspection
Education of clinicians about the model of integrated curative and palliative care goals may help clinician understanding and acceptance of the “gray zone” and broad spectrum of dual goals of care. Palliative care and diversity training for PICU clinicians are important elements of optimal EOL care and may help reduce feelings of powerlessness and helplessness. Clinicians may benefit from a practice of exploring implicit and explicit values of self and how those values impact care of children and families in these circumstances. Finally, for a variety of reasons, clinicians may experience distress caring for children who die despite curative goals. We recommend that institutions develop professional support mechanisms for clinicians. Approaches for managing distress and supporting resilience for clinicians are explored in the “Promoting Provider Education, Support, and Resilience” article in this supplement.
Differences of opinion are common under these circumstances for a variety of reasons and significant conflict that may develop as a result usually detracts from optimal care of the patient and family. Early signs of conflict or risks of conflict should be addressed promptly. Conflict prevention, recognition, and resolution are critical to optimize the quality of care and may require engagement of clinicians and specialists skilled in communication and conflict resolution. At times, disagreements between the medical team and the family may become intractable, and no consensus can be reached despite high-quality communication efforts. A full discussion of a fair process-based approach to cases involving intractable disagreements is outside the scope of this article, and readers are referred to a thorough exploration of this topic provided in the recent multiorganization consensus statement, “An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in ICUs” (39).
We describe the scope of EOL circumstances encountered in PICUs when a child’s death occurs in the context of curative treatment goals. Merging curative and optimal EOL care is possible, important and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal EOL care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict often arise. Through an intentional exploration of self and others’ perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in EOL care may lessen, allowing the central focus to remain on providing optimal support for the dying child and the family.
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