Advance Care Planning Along the Care Continuum

14 Advance Care Planning Along the Care Continuum

Jonathan Mullin, Rachael Burgess, and Justin Baker

Advance Care Planning

Advance care planning in adult medicine has been defined as a process of understanding and sharing values, goals, and preferences regarding current and future medical care, which occurs among patient, family, and healthcare providers.¹^,² As the field of pediatric palliative care (PPC) has emerged, advance care planning has grown to include children, adolescents, and young adults with serious illness and is now considered standard of care.³ In pediatrics, the child is legally presumed to lack decision-making capacity, which falls to a parent or surrogate on the basis of parental authority—a responsibility to make decisions on behalf of the child, acting in their best interest.⁴ However, best practices include involving children in any decision-making process, including advance care planning, to the extent that their age and development allow, to the degree they desire/are willing, and when consistent with family values, including assent when appropriate.⁴ Box 14.1 provides examples of specific language to use for advance care planning topics throughout this chapter.

Box 14.1 Communication Strategies for Advance Care Planning

Introducing Advance Care Planning

Would it be helpful for us to talk about if things don’t go as we all hope?

I wonder if we should think together about how to care for Allison if her condition continues to worsen.

In situations like this, many families wonder about what the future holds and can find comfort in planning ahead, including worst-case scenarios.

Honestly, I’d recommend that we continue to hope for the best and start to prepare for anything. Can we talk about what that means?

Discussing Resuscitation Preferences

In light of your goals to focus on comfort, if José’s heart would stop, I’d recommend that we not attempt CPR or other interventions to restart the heart, recognizing that José has reached the natural end of his life.

Medical Technologies and Potential Life-Extending Interventions

As children approach the end of their life, we often have to have difficult conversations about tradeoffs. Specifically, there may be medical interventions offered that can prolong your child’s life and also have implications about your child’s quality of life and level of care. Would it be okay to talk about this?

Discussing Location

As we prepare for the end of Leah’s life, have you discussed details? Sometimes children and their families have a preference about where they would want to spend the rest of their life if they knew time was short. Would it be helpful to think about this together?

Discussing POLST Forms

Given what we have just discussed about not performing CPR, should Max’s heart stop, I’d recommend we make sure this preference can be honored outside of the hospital. This means that together we complete a form that documents these decisions and protects Max from undergoing these interventions no matter where he is.

Advance Care Planning in Pediatrics

The American Academy of Pediatrics (AAP) Policy Statement on Pediatric Palliative Care and Hospice Care Commitments, Guideline, and Recommendations emphasizes the importance of the process of advance care planning over time, stating “at a minimum, goals of care and treatment choices should be revisited whenever requested by the patient or family, with every hospitalization or with any significant change in treatment course or prognosis, and at least annually for children with complex chronic conditions.”⁵ Practically, this includes assessing a child and family’s understanding and information preferences and incorporating the child into the advance care planning process as able. It is crucial to elicit input from a child who is involved in the decision-making process so that their goals and values can be understood and documented (while they can have such conversations). As with adults, advance care planning in pediatrics can capture the child’s voice and wishes prior to the child losing the ability to participate in discussions. However, many pediatric patients are unable to participate in advance care planning discussions because of age, developmental level (including children with developmental delays), or because of child and family preference. In these situations, advance care planning often becomes less about understanding or documenting preferences (prior to capacity being lost) and instead helping surrogate decision-makers, typically parents, think and plan ahead about decisions they may need to make in the future. Unlike with adults, surrogates often have to make decisions for children who have never been and will never be able to participate in decision-making. This can increase the burden and emotional weight of advance care planning for children.

Benefits of advance care planning in pediatrics include preparation for end-of-life care, such as choosing the location of death; a decreased perception of suffering; and a better experience of end-of-life care.⁶^,⁷^,⁸ Children and families value advance care planning,³^,⁸^,⁹ including the ability to make good decisions, prepare, and facilitate coping.³ Parents identify feelings of lack of readiness and the burdensome nature of thinking about the future as barriers to advance care planning³ despite studies showing that advance care planning does not cause significant distress for children and their families.³^,¹⁰ Clinicians cite the biggest barriers as unrealistic parental expectations, differences in understanding of prognosis, lack of parental readiness for discussions, worry about taking away hope, uncertainty about prognosis, and ability to have these discussions.³^,¹¹ These perceived barriers often lead to lack of discussions with children and their families,³^,¹²^,¹³ and discussions occur later in the course of illness despite parental and provider opinions that they should occur much earlier.⁸^,¹¹

Advance care planning discussions are often perceived as “high stakes” and can be emotionally challenging for patients, families, and clinicians. Parents differ in preferences on who should initiate these discussions⁸ but voice their desire for partnering with clinicians in a sensitive manner, with some degree of their child’s involvement.³ Involvement of the child can include explicit conversations and use of advance care planning tools, direct statements from the child about nonparticipation, and parental assessment of child’s preferences that have been established throughout the child’s life and illness. An additional factor is that clinician training and experience with advance care planning discussions may be limited and/or variable.³

Advance Care Planning as Goals-of-Care Conversations

Advance care planning discussions are best thought of as an extension of goals-of-care conversations that address future-oriented topics and imagine the child in a worse state of health along an expected or possible trajectory, including at end of life. These discussions can be approached through the process of shared decision-making. Broadly, shared medical decision-making includes decisions made by more than one party, each aware of treatment options and implications, jointly contributing their expertise, knowledge, and values to the decision-making process.¹⁴ This method is most commonly used when multiple medically reasonable treatment options with variable benefit-to-burden ratios exist.¹⁵ (For further information about goals-of-care conversations, see Chapter 12: “Practical Aspects of Palliative Care Communication.”)

Advance care planning discussions often include discussions about worsening health and end-of-life care and are best preceded by honest disclosures of prognosis. Given the emotional weight of discussing poor prognosis, advance care planning discussions may be best preceded by conversations about their nature and process. Often referred to as “talking about talking about it,” discussing the logistics, advantages, disadvantages, and information preferences about advance care planning can be helpful to reach a shared understanding with children and their families about the specifics of these conversations before they happen.¹⁶ Once aware of child and family information preferences, providers can tailor conversations to the individual needs of children and their families. Discussions about prognosis may need to include multiple providers from palliative care, primary care, and other medical subspecialties, with the goal of having the necessary expertise to provide the medical information and answer any questions that might arise. These discussions can then include a review of testing and treatments provided, with clear, unambiguous explanations of negative outcomes. For children with chronic complex conditions, discussing trajectory of illness, comparing it to known natural histories, and discussing child, family, and provider perceptions of progression can help children and their families align their understanding with that of the medical teams. Uncertainty will always exist in prognostication; however, discussing “best case, worst case, and most likely” can allow for the uncertainty to be contained within the reasonable expected range of outcomes and can avoid mistrust that can arise when the disclosed prognosis does not match the child’s actual prognosis. Additionally, providers must use clear language, including the words “death” and “dying” and avoid the temptation to provide reassurance about the prognosis itself, as this may obfuscate the message.¹⁷

Barriers to discussing a poor prognosis include the belief that sharing a poor prognosis will cause psychological harm and lead to a loss of hope and the belief that children and their families do not want to know what is ahead,¹⁸^,¹⁹ which can cause providers to avoid or delay discussing prognoses or deliver prognoses in an overly vague manner.¹⁸^,²⁰ In fact, parents usually want to know as much prognostic information as possible to allow them to make good decisions,²¹^,²² and disclosure of poor prognosis does not cause parental distress or depression but decreases anxiety, increases satisfaction, and, perhaps counterintuitively, allows parents to feel hopeful.²²^,²³^,²⁴^,²⁵^,²⁶

Even when prognosis is poor and the child is at the end of life, families remain hopeful.²³ When hope for a cure or hope for a full and meaningful life is taken away by illness, the hopes of a child and family often expand to include hope for comfort, meaning, time, and love.²⁷ Still, children and families may continue to hope for positive outcomes that they know will not occur. Openly labeling these hopes as unrealistic or implying that children and their families are in denial or do not understand the prognosis risks isolating families or causing more distress. Aligning with hopes by using phrases such as “We will join you in hoping for a miracle,” or “I wish that were possible,” can offer support and show empathy without providing any misleading or false statements.²⁸

Advance care planning discussions can then typically include honest, thorough, and relevant medical information, followed by discussions of goals, hopes, and values. These conversations can include discussing alternative care options, examining risks and benefits of proposed treatment options, exploring tradeoffs, and formulating a plan, which may or may not include formal and/or legal documentation.²⁹ Historical focus on advance directives and misconceptions that advance care planning is equivalent to discussions about do-not-resuscitate (DNR) orders may unduly shift the focus of advance care planning discussions to documentation and/or orders to limit medical interventions. Best practices include multiple conversations over time, recognizing that goals and preferences may change and that plans of care are often more complex than what can be formally documented.³⁰ Special attention must also be paid to provider education in advance care planning conversations and provider self-care.

Advance Care Planning as End of Life Approaches

As a child approaches end of life, advance care planning can afford the opportunity for children and their families to prepare and plan for end-of-life care, including location of care, preferences for resuscitation, use of medical technologies, and use of life-extending interventions. As mentioned, best practices include an individualized and family-centered approach incorporating family values and beliefs. This involves developing and mobilizing provider–patient and provider–parent relationships.³¹ This approach optimally results in direct, honest, open, and compassionate delivery of information using neutral language to describe possible options and offering recommendations based on shared understanding of the illness trajectory. Providers should be aware of factors that influence decision-making across the spectrum of PPC.³²^,³³^,³⁴^,³⁵ Parents are motivated to be “good parents,” which involves allowing the child to be as healthy as possible while being present and advocating for their child.³³ As discussions turn to end-of-life care, family decision-making is influenced by the likelihood of improvement or treatment success, perception of the child’s suffering and will to live, and quality of life.³²^,³³^,³⁴^,³⁵

Providers approach advance care planning at end-of-life in a family-centered manner, individualized to the needs and preferences of each family, looking to achieve shared decision-making. This can be best achieved through collaborative communication: establishing a common goal or set of goals, exhibiting mutual respect and compassion, developing an understanding of differing perspectives, assuring maximum clarity and correctness in communication, and managing interpersonal and intrapersonal processes that affect how information is sent, received, and processed.³⁶ In the setting of advance care planning, the provider must take the responsibility to seek and attempt to understand the patient and family perspective. Attunement to one’s own beliefs and values is crucial in mitigating the impact of bias on questions asked, language used, and recommendations given.

At times, despite everyone’s best intentions/efforts, advance care planning can lead to conflict or disagreement about medical decision-making and future plans of care. These disagreements can be between providers, between providers and the patient and/or family, between patient and family, or between joint surrogate decision-makers (e.g., between two parents). Providers should pay special attention to disagreements between themselves or their teams. These disagreements can foster mixed messages and lapses in communication that can spur other conflicts. Providers should, through introspection, seek to understand their own perspectives and values and how those may be contributing to any existing conflicts, especially as they relate to the perspectives and values of other providers (for further information, see Chapter 16, “Resolving Conflicts in Pediatric Palliative Care”).

Preferences for Resuscitation

Despite best practices that advocate for advance care planning to include multifaceted goals and preferences for care as a whole, including a discussion of a patient’s preferences for resuscitation is appropriate. Cardiopulmonary resuscitation (CPR) is unique in that an order is required to forgo it, as it is presumed to be desired unless there is an explicit order or statement of refusal.³⁷ When treatment preferences include forgoing CPR, an order indicating this preference is documented in the appropriate place. Terminology may vary, including DNR, do-not-attempt-resuscitation (DNAR), and allow natural death (AND). DNR is most frequently used in the United States and instructs providers to not do CPR in the setting of a cardiopulmonary arrest. Other terms have been proposed to clarify these orders’ meanings. For example, DNAR attempts to negate, or at least attenuate, the underlying assumption that CPR will be successful if performed. AND has been recommended as a more favorable term from the patient’s perspective, although this has not been studied with children and their families.³⁸ Regardless of terminology used, any orders for limitations of resuscitation should indicate what has been discussed, recommended, and/or agreed upon, recognizing that having a DNR order in place and/or placing limitations around other life-sustaining therapies are often the most difficult decisions for parents to make.³⁹

Discussions about preferences for resuscitation are an important part of advance care planning as these interventions can significantly affect other stated goals of care, including location of care, quality of life, comfort, perceptions of suffering, and timing of the dying process. As in all goals-of-care discussions, providers should seek to understand patient goals and perspectives, discuss potential options, and offer recommendations that align with these goals. Provider-led, goal-concordant recommendations or options enable decisions around resuscitation to be consistent with best resuscitative practices. This also helps to avoid the “menu approach,” where components of a resuscitation may be discussed or offered separately, devoid of context and relationship to goals. For example,

Based on our discussion and your goals, we recommend that if your child’s heart should stop, this would indicate that she has reached the end of her life and it would not make sense for her to undergo CPR or be placed on a breathing machine. In order to make sure we are all on the same page about this, we will put an order in the chart that will protect her from these interventions. Does this make sense?

In the absence of a cardiopulmonary arrest, having a DNR order in place should not alter a child’s overall care, and medically appropriate treatment should be provided.⁴⁰^,⁴¹ Providers should avoid making a false assumption that a DNR order signifies that only comfort-focused interventions should be offered or performed. Providers should avoid the term “comfort measures only” (CMO), which is subjective and nonstandardized. This term can be used to signify the forgoing of laboratory testing, monitoring, respiratory support, medications, artificial fluids and nutrition, and/or nursing interventions. Providers may have different understandings about the specific interventions to which this term refers, which can generate confusion. Additionally, decisions around interventions at end-of-life merit clear and explicit discussions and an individualized approach. (For further information, see Chapter 27, “Easing Distress when Death Is Near.”) Language used in discussing preferences for resuscitation can significantly affect delivery of care. Reducing a child to their resuscitation status by using phrases such as “he is a DNR” or “we just made her a DNR” may lead to missed opportunities to provide high-quality, goal-concordant care during the end-of-life period.

Orders for Life-Sustaining Treatment

Medical, Physician, Provider, or Clinician Orders for Life-Sustaining Treatment (MOLST, POLST, or COLST) are forms that document medical orders for life-sustaining medical treatment, which includes CPR (chest compressions, vasoactive medications, and defibrillation or cardioversion), respiratory support (invasive and noninvasive), artificial nutrition and hydration, dialysis, and antibiotics, and can include information about preferred level of medical intervention.⁴² These forms were designed for use in adults but can be completed by the parent or guardian of a minor. In adults, these forms have led to a decreased incidence of unwanted resuscitation and are now being used more in pediatric practice.⁴³ Once completed, POLST forms are transferrable across settings and allow preferences to be known at home, work, or school and by emergency medical personnel and healthcare providers in the out-of-hospital setting or emergency room. Additionally, POLST forms can serve as a reference for hospital-based providers when confirming inpatient resuscitation preferences when children with completed POLST forms are cared for in the hospital setting. For children with a POLST form, the AAP recommends a collaborative approach, whereby schools, parents, clinicians, emergency medical services (EMS), and legal counsel review goals of care and POLST forms on a semi-annual basis.⁴⁴ This collaboration can help to ensure that the preferences on these forms is respected.

Similar to other advance care planning documents, these forms are tools to document and ensure that the medical care being provided matches the goals of children and their families. When discussing POLST forms with children and their families, it is important to highlight that these forms may be necessary legally to protect the child from unwanted resuscitation because emergency medicine personnel are required to provide resuscitative efforts without such forms and that these orders can be reversed or altered at any time.

Use of Medical Technologies and Potential Life-Extending Interventions

Advance care planning affords the opportunity to discuss preferences surrounding medical technologies and potential life-extending interventions, specifically not initiating or discontinuing these interventions. These can include, but are not limited to, disease-directed therapies, antibiotics, blood products, mechanical ventilation (via endotracheal tube or tracheostomy), noninvasive respiratory support, and artificial nutrition and hydration. Similar to other aspects of advance care planning, these interventions can substantially affect goals of care and impact length and quality of life. Consensus statements and ethical precedent supports the withholding or discontinuation of medical interventions should the burden outweigh the benefit.⁴⁵ Preferences for these interventions may be related to the interventions themselves; children’s and their families’ assessments of the impact of these interventions on quality of life, location of care, and comfort; and the symbolism tied to the interventions. Some families may feel that non-initiation or discontinuation of medical interventions is equivalent to actively participating in the child’s death, which may require support and reframing. Specific attention should be paid to the non-initiation or discontinuation of respiratory support and artificial nutrition and hydration to support families through their concerns that they are “suffocating” or “starving” their child. Additionally, as children and their families imagine themselves or their child in a worse state of health, providers may have the opportunity to provide guidance about benefits and burdens associated with specific interventions, enabling informed and individualized advance care plans to be made.

Location of End-of-Life Care

The goal of advance care planning around location of end-of-life care is to allow the child and family the opportunity to make an informed decision about which setting best coincides with their goals and values and that their preference is not driven by provider or societal expectations about where a “good death” might occur. Sudden unexpected events, changes in trajectory, and how available resources match child and family preference are all challenges in coordinating location of death. These challenges mean that, despite planning ahead, at times, a child’s death may not happen at the preferred location. At the least, advance care planning allows for discussions about tradeoffs related to location of end-of-life care and other family goals and preferences. Additionally, the process of planning for (a hoped-for) location of death itself brings significant meaning to a child and family, and preparedness is a key factor in parental perception of end-of-life care.⁴⁶ In addition to presenting options to children and their families, providers should be aware of available resources for care and support regardless of location, with the focus on matching the location of care and services with larger goals such as time, comfort, and familiarity with caregivers. Having these discussions well before a child is nearing the end of life provides maximal time for clinicians to organize resources and make proper arrangements to honor the wishes of the patient and family.

Legacy-Making

Legacy-making can be defined as doing or saying something that can be remembered, either intentionally or serendipitously.⁴⁷ At the end of their lives, children and adolescents often feel a strong need and want to be remembered.⁴² Legacy-making can help children prepare for their own deaths, influence others’ lives, and inspire and comfort family members.⁴⁷ Legacy projects can be activities completed by the child with or without a parent, including artwork, writing, poetry, songs, videos, and scrapbooking, or activities completed on behalf of the child and parent, such as photographs, hand and foot prints and molds, and a lock of hair. Additionally, seeing family members, taking a meaningful trip, and bequeathing belongings also constitute legacy-making, as might the ability to participate in research or be an organ or tissue donor. Providers from many different disciplines, including child life specialists, art and expressive therapists, psychologists, chaplains, and social workers may have unique relationships and specialized skills to assist in meaningful legacy-making as a part of advance care planning. Legacy-making can evoke difficult or painful emotions and may be interpreted as meaning that death is near and, therefore, these efforts can be met with resistance from children themselves.⁴⁸ Discussions around starting legacy-making should be approached in a sensitive and respectful manner and can often be as simple as allowing children and their families to revisit and celebrate the good times in their lives, which itself can facilitate positive coping.¹⁶

Incorporating the Child into Advance Care Planning

Research supports involving adolescents and young adults in their healthcare decision-making, including advance care planning; these patients’ concerns and needs differ from those of adults or patients’ family members.⁴⁹ Medical decision-making in the adolescent and young adult population is often influenced by immediate family, peers, social media, a lack of experience with healthcare, and concerns about confidentiality, which should all be considered.⁵⁰ These patients want to share their values, beliefs, and preferences about end-of-life care⁴⁹^,⁵¹^,⁵²^,⁵³ and have developmentally specific needs, including hope for a legacy and being remembered, a greater emphasis on connection with others, and a growing need for both independence and autonomy.⁵¹^,⁵³^,⁵⁴ Advance care planning in adolescents and young adults can help meet these needs, prevent emotional and social isolation toward the end of life, and support parental decision-making (for adolescents who are not legal decision-makers).

Children of all ages should be incorporated into advance care planning. There is not a one-size-fits-all approach for providers. As mentioned, discussing the logistics, advantages, disadvantages, and information preferences about advance care planning with the child and family can be useful to develop an individualized approach. Providers need to balance being respectful of child and family preferences and consider making recommendations to children and their families about the process of advance care planning. Respectful and collaborative provider guidance can help direct children and their families toward best practices.

Family Reflection

“What’s worse than death?” It’s a question we had to discuss openly with our 19-year-old son as he battled a slowly incapacitating and mysterious neurological disease that left him deaf and paralyzed from the shoulders down. It was also a question gently raised by the palliative care team at the hospital where our son was receiving treatment. Even though we had been enduring this difficult medical situation for years, we were not prepared to handle the end-of-life decisions that were foisted on us by his declining situation. Thankfully, the palliative care team was there to raise the issues that needed to be discussed in a way that blended personal care and professional tact. The team engaged our son directly, as a legal adult, helping him face sad realities. They forged an emotional bond with him that allowed him to feel more cared for in an otherwise scary and sterile hospital environment. The team also spoke with us as parents and with all of us as a family, helping us move forward together, as a family unit going through one of the worst crises imaginable. With our son’s condition rapidly deteriorating, we never did get a signed medical directive, despite our efforts. In the early stages of his illness, he was understandably reluctant to make such grave decisions in such an official way. He left the medical documents unsigned, sitting by his bedside. And, as his disease progressed, communication became difficult, and his mental and physical faculties were too compromised to complete the directive despite the increased value of having one finished. Knowing what we know now about his fate, we wish we had been more intentional about having those conversations earlier—while, of course, respecting his freedom not to have them if he wasn’t ready. But the conversations facilitated by the palliative care team were nonetheless invaluable in helping us understand our son’s wishes when we needed to have that information. His answer to the worse-than-death question was clear: “To me, being unable to engage the world and loved ones is worse than death. Being ‘locked-in’ [fully conscious but unable to communicate with the outside world] is worse than death.” While it was unimaginably difficult to hear our beloved son confront his own death like that, it was reassuring knowing what his wishes were. And when he slipped into a permanent and unresponsive neurological state, we were able to make the painful decision to end life support with the confidence of knowing it was the decision he wanted. To be sure, these conversations with the palliative care team were almost unbearable to have. But they saved us added grief and confusion in what was an already tragic and confusing time.

Matt and Michele H.

Provider Considerations

Most children with serious illness will be cared for by a variety of providers from different disciplines, which may include primary care providers, subspecialists, psychosocial providers, and members of an interdisciplinary palliative care team. When the need for advance care planning arises, the question also often arises: Who should initiate and discuss advance care planning? Again, there is not a one-size-fits-all approach, and an individualized approach is warranted. Factors to consider include relationship and rapport of the provider with the child and family, provider experience and comfort with advance care planning, and role and discipline of the provider. Some children and families may want to discuss advance care planning with their primary care or long-standing subspecialists, others with psychosocial providers, others with members of the palliative care team.

Providers should approach advance care planning as a process that unfolds over time and covers an array of topics. This can allow for multiple providers to participate in different aspects of advance care planning that match providers expertise, experience, and comfort with child and family comfort and presence. For example, primary care providers or subspecialists can discuss disease-directed therapies, palliative care providers can discuss resuscitation preferences and life-extending interventions, chaplains and social workers can discuss anticipatory grief and provide information about ceremonies after death and bereavement, child life specialists can partner with children and their families for meaningful legacy work. However, providers should avoid restricting providers to discussing only portions of advance care planning based on stereotypes of roles and experience, as this can miss opportunities to best meet child and family needs. For example, a child with significant mood or anxiety issues may benefit from having conversations about life-extending interventions with a psychosocial provider present, or a child and family may each want to have conversations about resuscitation preferences with different providers based on rapport and relationships. Providers also need to have frequent, open communication about the nature of discussions and consider joint discussions to avoid mixed-messaging and protect children and their families from unnecessarily repeating conversations.

Advance Care Planning Tools

Advance care planning is documented in the form of advance directives. In adults, advance directives can be statutory documents, such as a durable power of attorney or a living will, or nonstatutory documents, which identify a healthcare proxy or healthcare preferences.⁵⁵ These directives serve to designate surrogate decision-makers and document preferences for medical care in specific situations. Patients of legal age who have decision-making capacity and are cared for by pediatric providers may benefit from discussing and completing statutory advance directives. This point merits special attention because providers at pediatric institutions are often less familiar with advance directives than their colleagues in adult settings. Additionally, many young adults live with illnesses that span from childhood into their adult years: when these children become legal adults, there may be no practical change in how advance care planning or medical decision-making occurs; however, new or additional documents may be legally required or beneficial. Documents in these situations include a durable power of attorney for healthcare (often referred to as a healthcare proxy), which authorizes a surrogate to make decisions about healthcare on the patient’s behalf, and a living will, which can specify medical treatment preferences in certain situations that may arise when the patient is unable to participate in decision-making. Palliative care providers should be familiar with the legal documents available in the area in which they practice.

Children not yet of legal age can also use tools to participate in the advance care planning process and to provide guidance for the surrogate (parent, guardian, or other) making decisions on their behalf. Examples of advance care planning tools include the pediatric-specific tools Voicing My CHOiCES and My Wishes and the adult advance care planning document Five Wishes. Even prior to completing an advance care planning document, providers can introduce an “Advance Care Planning Readiness Assessment” by asking children (1) whether talking about what would happen if treatments were no longer effective would be helpful, (2) whether talking about medical care plans ahead of time would be upsetting, and (3) whether they would be comfortable writing down/discussing what would happen if treatments were no longer effective.⁵⁶ Advance care planning documents can be selected based on the child’s age and developmental level and provider assessment, experience, and preference. Specific for pediatric populations, Voicing My CHOiCES was designed through feedback from adolescents and young adults about how they would want to document their wishes and how they would want to be cared for, supported, and remembered.⁴⁹

Once a document has been selected, it can be filled out by children with or without their families, with provider assistance and collaboration as needed or desired. These documents may be completed during multiple discussions over time or at a pacing that matches the child’s and family’s abilities and preferences. Some children and their families may want to complete the tool in its entirety to minimize the need for to revisit these topics. Some may want to think through the document and discuss choices without putting preferences into writing. Others may want to complete different portions of the tool at different times or not at all. Any advance care planning document is only a tool in the difficult yet important process of advance care planning and can occur alongside ongoing goals of care discussions. As such, provider involvement can be critical to help support children and their family in thinking through and completing emotionally challenging portions of the document and to clarify questions about medical treatment options. When used in a family-centered fashion, these tools can enhance preparation, improve communication, increase understanding of child and family goals, and reduce the burden of surrogate decision-making.⁵⁷

Home-Based Palliative Care and Hospice

As discussed in detail in Chapter 4, “Settings of Care,” a majority of children who die in the United States do not die at home. Nearly three-fourths of pediatric deaths occur in the hospital, mostly in intensive care units (ICUs) where intensive, life-sustaining medical therapy is typically provided.⁵⁸ Home-based palliative care and hospice programs, funded through usual insurance mechanisms of hospice insurance benefits, serve children in the home setting, including at end of life. The number of children who die at home as a result of complex chronic conditions has been steadily increasing and has been cited as a justification to expand the capacity for pediatric home-based hospice and home-nursing care.⁵⁹ Home-based palliative care and hospice for children may improve end-of-life care and bereavement;⁴⁶ allow the child’s death to occur in the preferred location;⁴⁶^,⁶⁰ improve the child’s symptom management, comfort, and quality of life and the family’s quality of life;⁶¹^,⁶² and improve resource utilization and increase cost savings.⁶⁰

Despite the benefits home-based services provide, they are often underused.⁶³ Providers must first understand barriers to hospice and home-based care, embrace the uncertainty of the time course of the end-of-life period in pediatrics, and use available resources to manage transitions of care, both logistically and emotionally. Providers will then be able to make appropriate referrals, thus maximizing the benefit children and their families receive. Understanding the benefits and barriers allows for thoughtful communication with children and their families.

Barriers to Home-Based Palliative Care and Hospice

The barriers to introducing palliative care and hospice for children often differ from those identified for adult hospice referrals. They may include barriers seen more commonly in adult hospice, including fear of addiction to pain medication, fear of hastening death through use of opioids, and concerns about legal action. There are also unique barriers to referral of children to home-based palliative care and hospice, which can be roughly divided into two groups: those that are associated with constraints within medical culture and those that are related to clinical practice.

Constraints on PPC within our medical culture include limited financial resources for specialized PPC, limited access specifically in underresourced areas, lack of research, lack of evidence-based guidelines and quality metrics, and lack of provider training and expertise. All of these barriers have been best addressed at the levels of resource allocation, policy, local and governmental advocacy, and curriculum development.⁶⁴ As a result, specialty PPC programs have increased at specialty children’s hospitals,⁶⁵^,⁶⁶ pediatric hospice and palliative medicine fellowship programs have grown in number,⁶⁷ and guidelines and quality metrics are being developed.⁶⁰ Despite these changes, the growth of pediatric home-based palliative care and hospice program lags behind hospital-based programs,⁶⁵^,⁶⁶ leaving opportunities for growth to better meet patient and family needs.

From the provider standpoint, the barriers to home-based palliative care and hospice are the same as barriers to palliative care in general: uncertainty of prognosis, the perception that families are not ready to acknowledge that their child is going to die as a result of their illness, language barriers, time constraints, and families’ preferences for life-sustaining care.⁶⁸ Specific to hospice, referrals have traditionally been reserved for children whose doctors were willing to predict that they had 6 months or less to live and whose families were willing to forgo curative treatment. The somewhat-arbitrary prognostic threshold of 6 months and the dichotomization of palliative and cure-oriented therapies often leads to introducing hospice care late in the child’s illness, thus preventing children and their families from receiving beneficial support, symptom management, and home-based care at or toward the end of life and may perpetuate the myth that hospice care is synonymous with “giving up.” Providers themselves may have emotional reactions to referring their patients to hospice, especially providers who managed cure-oriented treatment that was unsuccessful.

Logistical barriers exist for home-based palliative care and hospice services in the form of reimbursement and insurance coverage. In the United States, Medicare legislation passed in 1982 opted to cover either disease-directed therapy or hospice-based services, mandating that patients having primary insurance through Medicare must opt for these now-competing forms of care. In 2010, the Affordable Care Act included Concurrent Care for Children, which states that patients younger than age 21 years are legally eligible to receive hospice services while still undergoing curative or life-extending therapy.⁶⁹ Importantly this provision only applies to children covered by federal insurance (Medicaid or the state Children’s Health Insurance Program) and applies only to hospice services (not palliative care services). (Further specifics are discussed in Chapter 4, “Settings of Care.”) The example of hospice insurance policy in the United States highlights how systems in place can lead to confusion, misconceptions, and logistical hurdles that create a barrier for referral to home-based palliative care and hospice services.

Uncertainty of prognosis is much more common in pediatric patients than in adults. In most PPC programs, cancer represents less than half of all diagnostic groups.⁶⁵ Children with chronic and complex life-limiting conditions have a wide variety of illnesses, including those caused by prematurity, congenital disorders of every organ system, neurodegenerative abnormalities, and malignancies. All of these disorders are relatively rare and often do not lend themselves to accurate predictions about either the response to treatment or the likelihood of survival.

In light of this uncertainty, counseling on timing of hospice referral can be difficult and often varies from provider to provider. Many providers often delay referring patients to home-based palliative care and hospice until death is inevitable or expected in the immediate future, despite a large body of evidence that suggests physicians are poor predictors of life expectancy in the setting of serious illness.⁷⁰

Families may also share the misconception that hospice is equivalent with “giving up” and may decline these services as a result.⁷¹ Families often remain hopeful for their child to be cured or greatly outlive their prognosis even as the end of life approaches. The uncertainty of prognosis means that some experience unexpected improvements, idiosyncratic responses to therapy, and plateaus of relative stability that inspire families’ hope for a positive resolution of the child’s illness. Hopes for recovery are also fueled by the promises of innovative treatments, new technologies, medications or gene therapies, and by accounts of miraculous recoveries in the media and social media and in the marketing of children’s hospitals. Families also often worry about the effect of end-of-life care in the home on siblings.

Transitions of care to hospice often involve a change in the care setting, intensity, and providers, which can create additional barriers. Patients and their families often have formed strong relationships with their long-time providers. Providers may also form very strong attachments to their patients and have intimate knowledge of families’ needs and strengths.⁷² An abrupt transfer to a new team, regardless of the skills of its members and the best intentions of all those involved, has a profound and usually negative effect on the continuity of care that the child and the family need.⁷³ Introducing new providers and asking families to take on more responsibility for the child’s care during the most challenging times can discourage families from accepting hospice services and, at its worst, can take on the quality of abandonment.

Overcoming Barriers to Home-Based Palliative Care and Hospice Referrals

Similar to advance care planning, conversations about hospice can be held as an extension of goals-of-care conversations, specifically as end of life approaches. As such, home-based palliative care and hospice should be considered in terms of the patient’s and family’s needs along a continuum, rather than signifying a change in philosophy of care or signaling a certain location on or the inevitability of a disease trajectory. For the children and families cared for by palliative care providers, the barriers are worth overcoming and can be overcome by deliberately designed systems and transitions of care and thoughtful communication. When palliative care and hospice are introduced as services that seek to prevent, relieve, reduce, or mitigate symptoms and improve or maintain the quality of life for seriously ill children and their families, they can be integrated with curative or life-extending care.

As with discussions of goals of care or advance care planning, discussions about home-based palliative care and hospice are best initiated with an accurate discussion of diagnosis and prognosis. Considering the prognosis, goals can be reviewed and reframed where necessary in order to identify the needs of the child and family. Once needs are identified, providers can discuss how home-based palliative care and hospice can help meet these stated goals and needs. Examples of needs toward the end of life may include medications and comfort in the home, managing the logistics of a death in the home, providing medical equipment in the home, and additional supportive services from social workers, chaplains, expressive therapists, child life specialists, and bereavement or grief counselors. Throughout this conversation, it is important to reinforce that all providers are committed to collaborating across the continuum of care to support the child and family. As mentioned earlier, children and their families may have misunderstandings (often negative) about the word “hospice” itself, even though they may benefit from the services provided. One strategy for introducing home-based palliative care and hospice is to first introduce the services provided, emphasizing how they align with the identified goals and needs, and only then refer to hospice by name. This approach enables the provider to define what hospice means for the child and family, rather than allow that definition to be determined by previously held beliefs. Box 14.2 offers communication strategies for discussing hospice.

Box 14.2 Communication Strategies for Discussing Hospice

“In order to best support your goals of receiving care in the home setting and working to ensure your child’s best quality of life for as many days as possible, we would recommend home-based care from a multidisciplinary team of care providers. This team would provide support in the home setting to help with pain and symptoms and to support the needs of your child and family. The type of care I am describing is provided by a team of providers called hospice. This may not be what you thought about hospice, but I want to assure you this is how we work with these teams with our patients and families.”

This approach allows home-based palliative care and hospice services to be framed as coincident treatment. Many home-based palliative care programs that provide community-based care without the strict eligibility requirement for hospice allow patients to transition into hospice when it is appropriate. This approach helps to establish palliative care providers earlier, address child and family needs earlier, and ease transitions toward end of life, and it may shift focus away from dying, thus mitigating the effects of uncertainty and the dichotomization between curative therapies and hospice care.⁷⁴ As palliative care and hospice become more recognized as early interventions for children with serious illness, palliative care providers can help to create an environment in which starting home-based palliative care and hospice is less abrupt, more readily accepted by families, and associated with better quality-of-life outcomes at the end of life.⁷⁴ Programs of this nature do exist, but further development and advocacy are needed to better match the needs of all children and their families who could benefit from home-based palliative care and hospice.

Compassion and continuity are two key components to support hope during times of transition to hospice care. Compassionate relationships impart hope, regardless of the trajectory of illness.²³ Children and their families benefit from maintaining the relationship with those providers who have cared for them throughout their illness. Even after most of the disease-directed therapy has concluded, continuity of care can continue to support and nurture hope. Parents’ hopes are supported by continuing efforts that maintain the integrity of the parent–child relationship and by continuing to integrate their spiritual beliefs into their lives throughout the course of the illness.⁷⁵ Transitions of care often require care coordination, and hope can be supported by relieving some of these burdens.

Hope extends into bereavement by affirming a lifelong bond with the child that continues after death. In bereavement, parents strive to find ways of sustaining that lifelong bond and attempt to make meaning of their forever-changed life.⁷⁶ Home-based palliative care and hospice programs that include bereavement, sibling programs, and ongoing support groups can assist families as they find hope in their search for meaning in their child’s death and grow in the relationship with their child after death.⁷⁷

Vignette Reflection

Advance Care Planning for End-of-Life and Legacy

James was diagnosed with metastatic alveolar rhabdomyosarcoma at age 12. He started chemotherapy but relapsed several months later. Over the next 12 months, James continued to receive various chemotherapies, including investigational therapies. These treatments provided some, albeit minimal, reduction in disease burden. During that year, he had recurrent admissions for complications related to his cancer and therapies including anemia, infection, pain, and malignant pleural effusions. Subspecialty palliative care was consulted and joined an extensive team of medical and psychosocial providers caring for James. During initial encounters for pain management, the palliative care team began to develop rapport and learn about James’s interests and hobbies. With time, advance care planning was gently introduced as a way to help James and his parents think about the future. Initial conversations included James and his mother. Later, his parents encouraged him to have conversations with the palliative care team alone, to offer him individual support. Voicing My CHOiCE was introduced and, while not formally completed, guided conversations between James and various members of the palliative care team. James shared his understanding that he was going to die from his cancer. With further exploration, he shared his worries about his parents and younger siblings, wanting to know that they would be okay without him and that they would remember him. As a result of these discussions, James wrote letters to his family members for after his death and worked with art therapy to complete a large mural project that celebrated his time and relationships with his family. James also shared his desire to enjoy life and have as much time as possible out of the hospital. To achieve this goal, he underwent draining catheter placement for his pleural effusions. He was able to attend professional sporting events and completed a cross-country trip to the ocean to swim with dolphins. Earlier in his illness, James had a short ICU stay requiring intubation for pneumonia. Reflecting on that experience, James voiced a preference to pursue intensive care if it might lead to recovery or improvements that would allow him to enjoy his life. He was clear that if providers were not certain about his ability to recover, he wanted to be given a time-limited trial to do so. He voiced his preference for his parents to make these decisions for him when the time came, even if he was able to participate in discussions. Several months later he had worsening respiratory distress related to his malignant pleural effusions and tumor progression. His parents agreed to an ICU admission and intubation based on his stated wishes. Without improvements in his respiratory status, and radiographic evidence of worsening lung involvement of his cancer, life-sustaining medical treatments were discontinued, and he died comfortably, shortly thereafter in the ICU, surrounded by his family.

In the United States in 1984, the National Organ Transplant Act was approved, establishing the Organ Procurement and Transplantation Network (OPTN). The OPTN is responsible for the nationwide, equitable distribution of organs for transplantation using specific allocation policies, which are managed regionally by Organ Procurement Organizations (OPOs).⁷⁹ From 1998 to 2020, there have been more than 790,000 transplantations in the United States: 79% from deceased donors and 21% from living donors. Patients younger than 18 years old comprise 7% of all transplant recipients and 14% of deceased donors.⁷⁹ The demand for organs continues to exceed the supply: as of January 2020, approximately 112,000 people were awaiting transplantation, of which 2,000 were younger than 18 years.⁷⁹ For more information on the lived experience of awaiting transplantation, see Chapter 32. Palliative care providers may find themselves caring for children who may be donors and for children who may be recipients. As such, providers need to be aware of systems and factors influencing organ donation; child, family, and provider perspectives about organ donation; ethical considerations; and best practices in discussing organ donation with families.

Definitions

Organ donation, by law, occurs after an individual has died. In the United States, death has been defined, legally, as the irreversible cessation of function of either circulatory or respiratory functions, or all functions of the entire brain, including brainstem.⁸⁰ Practically, organ donation can occur in distinct ways after either a circulatory and respiratory death or after death by neurologic criteria (often referred to as “brain death”). If an individual has died by neurologic criteria, the body’s functional status is maintained with cardiorespiratory support, and organs are subsequently procured. When an individual is critically ill, dependent on cardiorespiratory support, and the family or surrogate has decided to forgo life-sustaining medical treatment, organ donation may be able to occur after circulatory death. (Commonly referred to as donation after circulatory death [DCD]). In this setting, the individual is taken to an operating room, life-sustaining medical treatment is discontinued, and the individual receives standard end-of-life care. Once pulselessness occurs, a predetermined waiting period (commonly 5 minutes) elapses, after which time the organ procurement team enters the room, and the organs are procured. If the individual has not died within a predetermined amount of time (commonly 1 hour), then the organ donation is cancelled.⁸⁰

A wide array of tissues can be donated in the postmortem period, including heart valves, musculoskeletal tissue (ligaments/tendons and bone), nerves, reproductive tissue, skin, and vascular tissue (veins/arteries).⁸¹ Tissue donation does not have the same immediate time-sensitive considerations as organ donation. For both organ and tissue donation, patient characteristics and comorbidities determine what can be donated. Collaboration with OPOs is essential in determining what options may exist.

Ethical Considerations

Organ donation and criteria used to define death are ethically complicated and nuanced entities.⁸⁰^,⁸² Examples of ethical challenges include caring for patients for whom the legal definition of death by neurologic criteria is not accepted as death from a personal, religious, spiritual, or cultural standpoint; how long to wait between pulselessness and organ procurement in DCD; and ensuring that patients who die in the operating room after discontinuation of life-sustaining medical treatments receive the same quality end-of-life care, including symptom management and desired presence of family members, if possible.⁸⁰

Additionally, given the imbalance between potential recipients and available organs, laws and regulations have been put in place to optimize organ donation. At their best, policies that focus on process can minimize the implication that not consenting to organ donation is negative⁸³ and allow many children and their families who want to donate organs to be able to do so.⁸⁴

Most applicable to palliative care providers is an awareness of real or perceived conflict of interest. Palliative care providers care for children who are both organ donors and organ recipients, often concomitantly. To mitigate potential conflict of interest, best practices are to use available organ-donation–specific resources (through OPOs or otherwise), to ensure that providers discussing organ donation are appropriately trained, to not serve in roles that may call into question conflict of interest, and to separate conversations about organ donation from those about prognosis and end-of-life. Specifically, in situations where DCD is being considered, discussions of discontinuing life-sustaining medical treatment should occur prior to discussions of organ donation, and a clear boundary should exist between palliative care providers and organ procurement representatives.⁸⁰ Specifics of communication around organ donation requests are discussed later in this chapter.

Factors Influencing Donation

Multiple studies have evaluated factors influencing a person’s willingness to donate their own or a family member’s organs.⁸³^,⁸⁵^,⁸⁶^,⁸⁷^,⁸⁸^,⁸⁹^,⁹⁰ Specific patient and family characteristics, beliefs, attitudes, and experiences have been correlated with both consenting to and declining organ donation (Box 14.1).⁸⁵^,⁸⁶^,⁸⁷^,⁹⁰^,⁹¹ Families deciding about organ donation on behalf of their children have a higher consent rate than do families deciding on behalf of adult relatives.⁹² As with any complex, multifactorial decision, the many variables determining a person’s willingness to donate organs are likely to be weighed differently for each individual. Awareness of these factors can allow providers a better starting point to understanding what factors may help determine decisions about organ donation. However, previously correlated factors are not a substitute for open-minded and judgment-free discussions to help understand a patient’s and family’s perspective on organ donation, when applicable.

Religion

Most major religions recognize organ donation as an act of compassion and altruism and thus support organ donation, leaving decisions up to individuals in the religious community.⁹¹^,⁹³^,⁹⁴ A significant number of people cite their religious beliefs as a reason not to donate.⁸⁶^,⁹¹^,⁹³^,⁹⁵ In particular, persons who are concerned about maintaining the body’s integrity after death and/or believe that organ transplantation is against God’s will have less favorable attitudes toward organ donation.⁹¹^,⁹³^,⁹⁵ The role of religious beliefs on the organ-donation process has been explored, with many conflicting conclusions.⁸⁶^,⁹¹^,⁹³^,⁹⁵^,⁹⁶ This may be due to an incomplete understanding of the complex interactions among religion, societal norms, family dynamics, and personal organ-donation beliefs.⁹³ Religion is a part of many peoples’ lives and may influence perspectives on organ donation in ways that may not be predictable at population or community levels. It is essential for the medical team to understand and respect the religious beliefs of patients and families if the team is to provide unconditional support during the decision-making process. Chaplains and members or leaders of the child and family’s spiritual or religious community may be helpful in supporting the religious or spiritual needs of children and their families faced with decisions about organ donation.

Race and Ethnicity

Organ donation does not occur in a vacuum of social and cultural context of healthcare and society. The same challenges that exist for healthcare delivery based on race and ethnicity also exist in organ donation. In the United States, individuals from minority racial and ethnic groups tend to have less trust in the healthcare system and are less likely to donate organs, discuss organ donation with family members, or carry an organ donor card,⁸⁶^,⁹¹^,⁹⁷^,⁹⁸^,⁹⁹ and are more likely to believe that doctors will not try as hard to save a person’s life or pronounce death correctly if doctors know that the person is willing to be an organ donor.⁹⁵^,⁹⁷ Healthcare providers and systems may also be contributing to differences in consent to organ donation. For example, one study of factors associated with willingness to donate found that black families were less likely to have spoken with a chaplain or OPO representative and received counseling on fewer organ-donation topics than did white families.⁹⁷ In pluralistic societies, providers should be aware of beliefs and experiences of individuals from minority racial or ethnic groups. Policies and systems that standardize processes may allow for a more just approach to discussions about organ donation.

Child and Parent Perspectives

In 2019, children younger than 18 years made up 8% of the donor pool, and nearly half were aged 11 to 17 years.⁷⁹ As with other aspects of advance care planning, the views and preferences of both child and family should be incorporated in the organ donation planning process.

Many students recognize the benefit of organ donation and transplantation to help others and would be willing to donate their organs.¹⁰⁰^,¹⁰¹^,¹⁰²^,¹⁰³^,¹⁰⁴ Opposition to or discomfort with organ donation includes lack of trust, lack of information, uneasiness with a body being cut up, fear of being disrespectful to the dead, discomfort with having one’s organ in another’s body, and fear of not being dead.¹⁰²^,¹⁰³ In one study, one-fourth of students with driver’s licenses or learner’s permits had designated themselves as organ donors, with increased knowledge and previous discussions with friends and family serving as positive predictors of willingness to donate. However, of those intended donors, only slightly more than half shared this with their family, despite survey data showing that adolescents are willing to discuss organ donation with their parents.¹⁰¹^,¹⁰³ Families’ knowledge of patient preference increases the likelihood of consent to organ donation, highlighting the importance of helping to facilitate conversations between children and their families.

Several factors influence parents’ willingness to consent to organ donation on behalf of their children¹⁰⁵^,¹⁰⁶^,¹⁰⁷ (Box 14.2). Most notably, parents valued rapport with the person making the request, especially when members of the child’s healthcare team first mention organ donation.¹⁰⁶ Bereaved parents who were not approached about organ donation believe they would have been open and welcomed the conversation. Interestingly, these parents made assumptions about why they were not asked, specifically centered on the health or value of the child’s organs.¹⁰⁷ Consenting to organ donation has a positive effect on parental bereavement.¹⁰⁸^,¹⁰⁹ Very few surrogate decision-makers for adults (6–14%) regretted the decision to consent to organ donation, but as many as 38% of individuals who did not consent to donation regretted their decision.¹¹⁰ In pediatrics, no parent regretted their decision to donate, and several expressed regret that they had not consented to donate more organs or tissue.¹⁰⁹

Provider Roles and Perspectives

Organ donation involves an interdisciplinary team, including members from organ procurement organizations and other institutions who have various backgrounds, training, and perspectives. Understanding the roles and perspectives of the many providers involved in organ donation is essential to ensure collaboration and provide consistent and compassionate care to children and their families.

Pastoral Care

Chaplains are especially skilled in communication and providing support to bereaved families, and they are sensitive to ethnic, cultural, and religious values; thus, they are a valuable resource during the organ donation process.¹¹¹ Chaplains’ participation in the organ donation process varies, with surveys showing that one-third to one-half of hospital-based chaplains are involved in the organ donation process.¹¹¹^,¹¹² Most chaplains view organ donation as consistent with their religious values.¹¹³ As with any diverse group of providers, individual chaplain’s views may vary.¹¹⁴ As a group, chaplains highly value respect for the donor, not viewing the donor as a means to an end, and the importance of families being free from coercion and having the right to decline organ donation on religious grounds.¹¹³ Overwhelmingly, chaplains believe they can be an extremely valuable source of support during the organ donation process because of their training in grief and crisis counseling.¹¹³

Social Work

Social workers may be involved with families for whom organ donation is a consideration, often meeting families at the time of accident or other traumatic injury that may lead to a situation in which organ donation is being considered. Social workers may also provide support around decision-making and grief that surrounds end-of-life care¹¹⁵ and support other providers in navigating the organ donation process in the setting of a dying child and grieving families.¹¹⁶ These providers’ role in hospitals helping families navigate postmortem care may put them in communication with families during the organ donation process.¹¹⁷

Nursing

Nurses spend a large amount of time at the bedside providing direct patient care and are in a strong position to support families considering organ donation.⁸⁸^,¹¹⁸ Nurses focus on respect and dignity of a child and their family during the organ donation process and view protecting the child and family as a major responsibility.¹¹⁹ Barriers to high-quality nursing care during organ donation include a lack of education, experience, and involvement in decision-making process.¹²⁰ Most pediatric critical care nurses see the benefit of organ donation to both the child’s family and society. Specific to DCD, they report feeling less knowledgeable or comfortable answering questions from families.¹²¹ Strategies to assist nurses in this role include educational programs related to organ donation, programs to improve communication skills, and ensuring a work environment that promotes excellent end-of-life care. Intensive care unit leadership must promote a culture that recognizes nurses as valued members of the team. As such, the bedside nurse should be present at family conferences, nurse performance evaluations should include end-of-life care skills, patient assignments must promote continuity of care, and unit policies and guidelines regarding the care of potential organ donors must be readily accessible.¹¹⁸

Physician

Initiating the request for organ donation has typically been the attending physician’s responsibility. In 1998, changes in federal regulations concerning organ and tissue donation stipulated that individuals initiating the organ donation request process must be properly trained.¹²² This was misinterpreted by some to mean that only OPO staff members could approach families, thus excluding physicians from the process.⁸³ However, a donation request is now recognized as a collaborative process between OPOs and the medical team. The physician’s relationship with the family is invaluable, as are the training and skill of the OPO representatives. An important physician responsibility is to incorporate OPO staff members into the medical team and coordinate efforts in the organ request process.⁸³

Organ Procurement Organizations

There are 58 OPOs in the United States and Puerto Rico.¹²³ These organizations serve specific geographic areas and coordinate organ procurement efforts. OPOs evaluate potential organ donors, discuss donation with families, facilitate surgical removal and preservation of donated organs, and coordinate these organs’ distribution according to national organ-sharing policies.¹²³ Factors that are important for the success of OPOs include experienced leadership, adequate staffing, allocation of responsibilities, strong relationships with donor hospitals and transplant centers, and support of donor families. Highly efficient and successful OPOs have a management team that is focused on the donation process, systems for monitoring activity and tracking outcomes, and efficient mechanisms for resolving conflict with hospitals and within the organization itself.¹²⁴

The US Healthcare Financing Administration changed the federal Conditions of Participation for tissue and organ donation such that hospitals must notify their OPO of any patients who are potential donors. The intention was to increase OPO referral rates so that all families would have the option of tissue and/or organ donation. Furthermore, the person making the donation request must be adequately trained to do so. This stipulation was based on evidence suggesting that healthcare providers lack sufficient knowledge and training to effectively approach families about organ donation.⁸³ Involvement of the local OPO is imperative to the process, and families have reported that discussing organ donation with an OPO representative is crucial to their decision-making process. In fact, talking with an OPO staff member prior to the request for organ donation and spending more time with an OPO representative are positively correlated with the decision to donate.⁸⁵

Discussing Organ Donation

Palliative care providers may find themselves engaging in discussions about organ donation as a part of advance care planning or in the setting of a dying or dead child. Palliative care providers need to be familiar with logistical, ethical, and societal beliefs and practices surrounding organ donation to meet the needs of the child and family.

Organ Donation as Advanced Care Planning

In the United States, most people are in favor of organ donation and would donate organs themselves, but only a minority are registered organ donors.¹²⁵^,¹²⁶ Organ donation advocates encourage individuals to have conversations with loved ones about organ donation.¹²⁶ Primary care providers have been encouraged to talk to their patients about organ donation to provide education and dispel misconceptions.¹²⁵ One study included discussion of organ and tissue donation as a part of advance care planning for adults, and found that this was more likely to be completed by younger patients.¹²⁷ Most organ donation occurs from individuals after determination of death by neurologic criteria,¹²⁸ which is unlikely to be the cause of death for pediatric patients with serious illness, for whom advance care planning typically occurs. Often, organ and tissue donation discussions are initiated by children and their families who, in the face of the death of a child, may ask about organ or tissue donation as an altruistic act to help another individual or contribute to scientific research. Palliative care providers may have the opportunity to answer basic questions about organ donation and refer children and their families to OPOs for further information. In some instances, children and their families receiving palliative care services have been able to donate tissue to tissue banks and research institutions even after a death in the home hospice setting. This requires logistical coordination with hospice, the OPO, and the research institution. Discussions about organ donation as part of advance care planning may allow children and their families to have the opportunity to participate in organ donation and have preparations in place prior to end of life. This can often be done without greatly altering end-of-life care.

Approaching Families About Organ Donation

In the end-of-life or near-end-of-life setting, any provider on the healthcare team may be approached by a child’s family about organ donation, and providers must be able to provide support and resources when this occurs.¹²⁹ The standard approach for adults is that requests are initiated by OPO staff who have specific training. In pediatric populations, consent to donation increases when a trusted person from the healthcare team and a trained member of the OPO initiate the discussion.¹⁰⁶ Best practices in pediatric organ donation include a collaborative approach with providers and members of the OPO and supporting the decision of the family or surrogate decision-maker.¹²⁹^,¹³⁰ Special attention should be paid to the child’s preference when known¹³¹ and to cultural differences and language barriers. Collaboration with interpreter services, social work, and chaplaincy can provide culturally competent communication and offer providers insight into family and cultural dynamics.¹³⁰ Higher consent rates occur when the approaching provider is of the same racial, cultural, or ethnic background of the family, with some hospitals being deliberate about these characteristics of the approaching team.¹³⁰ Together, these best practices enable continuation of the individualized, clear, consistent, and compassionate communication that families should be receiving during these challenging times.

Several communication frameworks have been put forth for when families are approached. These include the standard approach, the presumptive approach, and dual advocacy.¹³²^,¹³³^,¹³⁴ The standard approach may be described as value-neutral, unbiased, and balanced. The goal is to help the family reach the choice that is best for them.¹³²^,¹³⁴ However, the goal of the presumptive approach is to increase the number of organs available for transplantation. Requestors view themselves as advocates for both donors and recipients. There is a shift from value-neutral language to value-positive language, and the discussion is biased toward supporting organ donation.¹³²^,¹³⁴ Dual advocacy considers the interests of both donors and recipients and promotes the family’s right to make a decision based on complete information, including the positive impact that organ donation can have. Dual advocacy recognizes that requestors must also consider the needs of the family.¹³³ Currently, there is controversy concerning the best way to approach families.¹³²^,¹³³^,¹³⁴ The ideal approach would allow for maximum consent to organ donation for those families for whom donation aligns with patient and family preferences while respecting the rights of the child and family. Fully transparent, fair, and even-handed discussions prioritize the rights of children and their families,¹³⁴ which is most consistent with the standard approach.¹³²

Several programs piloted around organ donation place providers (chaplains or social workers) in roles where they can provide support and coordination for families for whom organ donation discussions are likely to occur.¹¹¹^,¹³⁵ These programs have led to improved communication during organ donation discussions, improved relationships with OPOs, and increased support of staff, thus highlighting the importance of interdisciplinary care in the setting of organ donation. Box 14.3 offers communication strategies for introducing organ donation. Boxes 14.4 and 14.5 offer additional considerations regarding organ donation.