In many medical and ethics textbooks, pediatric issues are an afterthought. One explanation for this is proportionality. On a population basis, there are many more adults than children, so it is understandable that the majority of a general text would be devoted to the most commonly encountered problems. Yet, while it is true that sixty times as many adults as children die in the United States (Osterman et al., 2015), this does not mean that the more than 40,000 children who do die each year—not to mention the 500,000 others who are living with complex chronic conditions—do not deserve specific and thoughtful attention.
Further, in contrast to adults, most children die in hospitals, and the majority of these deaths occur in the intensive care unit often after undergoing interventions with little hope of benefit and associated with a degree of suffering that many adults would have rejected for themselves. To compound the problem, parents are then asked if they “want” to stop these interventions (Burns et al., 2000, Feudtner et al., 2002, Garros, Rosychuk, & Cox, 2003, Carter et al., 2004, Copnell, 2005, Tan, Totapally, Torbati, & Wolfsdorf, 2006, Lee, Tieves, & Scanlon, 2010), thus adding further grief and guilt to an already fraught scenario. There is, therefore, a great need for thoughtful and nuanced attention to how health care professionals think about, discuss, and address the particular issues pediatric patients and their families face.
Another reason that children are often overlooked in the palliative care literature is a failure to appreciate the distinctiveness of the ethical, practical, emotional, and social needs of children, including differences based on their age and experiences. Many people tend to assume that the same basic principles apply to adults as to children, and thus it is sufficient to address these principles in general, possibly with subtle modifications for the unique needs of the pediatric population. As the old saying goes, though, “Children are not little adults.” Neither is pediatric palliative care (PPC) a diminutive version of adult palliative care; it is a distinct specialty with unique aspects that demand particular attention.
Differences between Pediatric and Adult Palliative Care
The conditions and illnesses encountered in adult palliative care and PPC are often distinct. For instance, the majority of adults referred for palliative care have cancer, and thus many adult or general palliative care programs are situated within cancer centers. By contrast, genetic/congenital and neuromuscular conditions are the most common diagnoses in PPC (Figure 10.1). This difference from adult palliative care impacts both the focus of PPC clinical programs as well as the knowledge base required to provide optimal PPC.
It is not simply a question of certain diagnoses being more or less frequent in pediatrics. Some pediatric diagnoses (such as hydrops fetalis or spinal muscular atrophy type I) never occur in adults. Many others (like cystic fibrosis and severe forms of congenital heart disease) were once only seen in childhood, but thanks to advances in medical technology, patients are increasingly living into adulthood. This has left the health care system with two options: either have pediatricians care for young adults or expect adult physicians to become familiar with these conditions (ideally in collaboration with pediatric colleagues). Whichever route is chosen, expert knowledge of the issues facing children—not only physiological but also psychological, social, and spiritual—is crucial.
Most adults die relatively soon after initial palliative care consultation—in some studies, on the order of weeks (Kamal et al., 2011)—primarily due to comorbidities and a frequent delay in palliative care referral. Therapeutic relationships must be formed quickly and last a relatively short period of time. End-of-life (EOL) conversations therefore play a very large role in adult palliative care, and there is appropriate emphasis on bereavement support.
By contrast, two-thirds of children survive for at least a year after PPC consultation (Feudtner et al., 2011). This is not a sign of earlier referral to palliative care; on the contrary, pediatric referrals often come even later than in adult palliative care because of the presumption toward aggressive treatment. Instead, this reflects the significant diversity in pediatric conditions that are appropriate for palliative care, which can be divided into four categories (Himelstein, Hilden, Morstad Boldt, & Weissman, 2004).
1. Conditions which may lead to a child’s premature death, such as cancer. The illness trajectory of this group can mirror that of adult palliative care in general, although some childhood cancers which were once uniformly fatal—such as acute lymphoblastic leukemia—are now eminently treatable (Hunger et al. 2012).
2. Conditions that will lead to premature death, but life can be prolonged (often significantly) through medical treatment, such as cystic fibrosis.
3. Terminal conditions that are amenable only to palliative treatments, such as glycogen storage diseases.
4. Conditions that may not lead to premature death but do have significant impact on quality of life (QOL), such as profound static brain injuries.
The greater variability—and flatter trajectory in many cases—in disease progression creates both opportunities and challenges. On the one hand, there is greater potential for longitudinal relationship, built over a longer period of time. On the other hand, it can be difficult to pinpoint precisely when the patient is truly approaching the end of life. Prognostication—which is quite challenging even in adult palliative care (p. 84)—is even more complex in PPC. Some commonly used measures of prognostication (such as the surprise question, p. 87) have only recently begun to be studied in the pediatric population (Burke, Coombs, Menezes, & Anderson, 2017). The longer duration of the physician-patient relationship may further complicate matters, as this has been shown to impair the ability to accurately prognosticate the patient’s expected survival, at least for adult patients (Christakis, 1999).
Unique Aspects of Treatment of Children
Formulating and implementing a treatment plan in pediatrics can be very complex. Unlike most adults, children—especially very young children—may not appreciate the need for treatment that requires suffering today for survival tomorrow and thus may require additional supports in order to accept it. This requires the involvement of a multidisciplinary team including child life specialists, child psychologists, and expressive therapists (such as art, music, or play).
Even if a child is willing to undergo treatment, determining what that treatment should be can be challenging. Since many conditions that affect children rarely affect adults, there may be little commercial incentive to develop treatments for such conditions. Treatments that do exist may not have been tested on children, forcing clinicians into off-label use with inherent uncertainty as to dosing and side effects (Pandolfini & Bonati, 2005). Some medications used frequently in adult palliative care have an increased risk of side effects in children (Stephenson, 2005). For instance, antidopaminergic medications for nausea and vomiting are less likely to cause dystonic reactions in adults than children, especially the youngest.1 The difficulty in translating adult treatment regimens into the pediatric world is evident to anyone who has attempted to order haloperidol—a first-line medication for the treatment of nausea in adults—for a child. Resistance from the pediatric floor team is common because the medication is best known as an antipsychotic.
Despite these challenges and complexities, PPC receives relatively little attention in the academic literature, with only 3% of articles in palliative care journals devoted to pediatrics. Of these, only 8% are focused on new data, with most of the others being opinion and review articles (Kumar, 2011).
Unique Social Contexts and Constructs
In adult medicine, patients generally receive health care either in the hospital, clinic, or their residence (whether home, assisted living, or nursing home). Children, on the other hand, may require health care in other places like school or camp, so they can enjoy life despite chronic illness. The reality of managing care in remote or socially unaccepting environments can create challenges in terms of available medical technology, prompt medical attention, and adherence to an agreed-upon treatment plan. For example, an out-of-hospital Do Not Attempt Resuscitation (DNAR) order takes on a whole new significance when a child experiences cardiopulmonary arrest in a school setting. The staff may not be familiar with the scope of a DNAR order and may not feel qualified to assess the situation. Even if they are, there is often a reluctance to honor the order out of concern for other children present in a school or community setting, who may perceive that nothing is being done for the child in need (American Academy of Pediatrics, 2010; Kimberly, Forte, Carroll, & Feudtner, 2005).
Further, while social relationships are important for all patients, in pediatrics the role of parents and siblings—not to mention grandparents, extended family, teachers, and camp counselors—is especially crucial. A child’s developmental needs continue to evolve over time with regard to emotional maturity, intellectual capability, and social relationships. As a result, it really is not accurate to speak of “pediatric palliative care,” as this lumps together the neonate and the adolescent with their widely disparate needs and presenting conditions. It would be more appropriate to break up PPC into subcategories—such as prenatal, neonatal, child, and adolescent palliative care—which reflect the unique aspects of each, as this text does in ensuing chapters.
Children Aren’t Supposed to Die
The death of any person—whether young or old—is a cause for sadness. But whereas an adult’s passing can prompt reflections of a full life well-lived, children who die never had that opportunity. Medical advances have led many to believe that every sick child can be cured. Further, there is perhaps no stronger instinct than a parent’s to protect her child. All of these lead to a presumption toward more aggressive treatment in pediatrics than adult medicine, in the face of what is inherently an “unnatural” state of affairs. As some have put it, “When an eighty-year-old gets cancer, you have a conversation. When an eight-year-old gets cancer, you start chemotherapy.”
This can lead to a protracted and extremely burdensome course of illness. The combination of aggressive treatment and children’s inherent resilience can lead to a child “dying many times,” referring to situations where a pediatric patient is pulled back from the brink of death. While understandably a cause of celebration—if only transiently—among the patient’s family, it also runs the risks of exacerbating suffering and merely delaying the inevitable.
Given the relative rarity of death in childhood, parents also often feel isolated and alone in their situation, with no one with whom to compare notes. They often report that friends and family withdraw from intense involvement in their searingly painful circumstances; they either “just can’t bear to hear it” or feel inadequate to offer support. Thankfully, the Internet has enabled people in far-flung locations to reach out to each other, such as through the Courageous Parents Network (https://courageousparentsnetwork.org) and National Organization for Rare Disorders family support program (https://rarediseases.org/for-patients-and-families).
The “unnatural” quality of a child’s death creates a great burden not only on the child’s family but also on his caregivers. Concern for burnout is at least as high in pediatric as in adult palliative care (Liben, Papadatou, & Wolfe, 2008), and even those who have found healthy ways to cope with the death of adults struggle when it comes to children.
End-of-Life Decision-Making in Pediatrics
For all of the reasons noted here, the uniqueness of PPC has increasingly been recognized in recent years. An Institute of Medicine (2003) report raised awareness about the particular complexities, needs, and opportunities inherent in PPC. There has also been growing attention to services provided to children and their families, ranging from the construction of the first freestanding pediatric hospice in the United States that same year to the consistent growth of perinatal hospice programs and increased understanding of the grief support and prolonged bereavement needs of parents (Snaman et al., 2016).
As noted, PPC is not limited to EOL situations, which is especially relevant to pediatrics given the more gradual trajectory of illness and complex family dynamics. Nevertheless, EOL decisions and care still represent an incredibly important aspect of PPC. In recognition of this, pediatric-specific approaches to EOL decision-making have begun to be formulated, and the framework offered by the Royal College of Paediatrics and Child Health is particularly helpful (Larcher et al., 2015).
This framework identifies three situations when forgoing treatment might be considered. The first is limited quantity of life, where death is either imminent (i.e., cannot be delayed) or inevitable (i.e., can be delayed but not prevented). As noted, the types of illnesses often seen in PPC can make it difficult to predict at what point a child—especially one living with a chronic illness—is “dying.” Even when it is clear that a child will not survive, the decision to forgo medical intervention can be excruciatingly difficult for parents and families.
The second situation is limited QOL, which necessarily raises the question of how to define QOL and who assesses it. Limited QOL may refer to the burdens of treatment being considered—which include psychological or spiritual suffering, as well as physical pain—as well as to refractory symptoms or functional restrictions. The challenge here is that first-person reports may not be available, especially for younger or developmentally disabled children. External assessments of QOL are susceptible to well-documented biases, whereby physicians consistently underestimate a patient’s self-assessed QOL.
In one study, for instance, subjects were asked to assess the QOL of a child who was either blind, deaf, or unable to talk, and required help to walk and do schoolwork, but who was happy and worry-free “most of the time” and whose occasional pain was effectively managed with acetaminophen. The control group—made up of healthy adolescents as well as those who were born prematurely—rated the QOL of this patient as substantially reduced. The other group—comprised of health care professionals—however, went so far as to rate his QOL as worse than death (Saigal et al., 1999).
This underscores the point that people who have lived with limitations all their lives can truly enjoy an existence that others cannot imagine. Even some who are thrust suddenly into chronic illness or disability adapt well, occasionally viewing the new existence as a major growth experience.
The reason for the discrepant perceptions of health care professionals may be that they were answering the wrong question. Subconsciously, they might have been comparing the hypothetical patient’s life to their own QOL, which presumably includes far fewer burdens and restrictions. But the real question is whether the hypothetical patient’s life is better than no life at all.
This is particularly relevant in PPC, where the life-limiting diagnosis is often present from birth in the form of congenital anomalies and many genetic conditions. The significance of this is that many children have never experienced life without illness, so comparing their own QOL to that of a healthy child is unimaginable. There is no “new normal” to become accustomed to, and certain limitations are taken for granted because that is the only life the patient and family have ever known. External observers—especially health care professionals, but even parents themselves, who are often healthy though disproportionately burdened in providing the day to day care—may not fully appreciate this and therefore need to approach QOL estimations with appropriate humility.
The third situation when forgoing treatment might be considered is refusal of treatment by a patient with sufficient decision-making capacity (DMC), which is obviously less common in pediatrics than in adult medicine. But when this is a possibility, the situation is complicated by both statute and case law which address when a minor is permitted to make his own medical decisions. This topic is addressed in detail in chapter 13.
Differences between Pediatric Ethics and Adult Ethics
Many ethical principles apply both to adults and children. These include
• the need to comprehensively analyze an ethical dilemma and balance competing rights and obligations (chapter 2)
• the importance of advance care planning (p. 70)
• the challenges of prognostication (p. 84)
• the need to establish a code status which reflects goals of care (p. 101)
• the role of time-limited trials (p. 118) and no escalation of treatment orders (p. 120)
In areas such as the right to forgo life-sustaining medical treatment, pediatric decision-making is often a logical extension of surrogate decision-making for an adult patient who lacks DMC, with specific emphasis on assessing the benefits and burdens (American Academy of Pediatrics, 2017).
Many other issues, though, have permutations and applications that are unique to pediatrics.
In General, the Patient Is Not the Decision-Maker
Adult patients are generally presumed to possess DMC, in which case they can refuse any treatment, even one that is necessary to sustain life (In re Quinlan, 1976). As Justice Cardozo wrote in the famous Schloendoerff decision: “Every human being of adult years and sound mind has a right to determine what shall be done with his own body” (emphasis added). Adults who lack DMC are the exception, and when this occurs the first step is to attempt to restore capacity, such as by lightening sedation or addressing metabolic abnormalities. If DMC cannot be restored, the next step is to seek substituted judgment (i.e., what the patient would want, if he still had DMC), either in the form of an advance directive or the input from a surrogate. Only when this is not possible does one move on to the best interest standard for decision-making.
By contrast, in pediatrics the patient is presumed to lack DMC. This is clearly true for very young children, but even teenagers often lack sufficient DMC to make complex, serious decisions. (The special case of adolescent palliative care is addressed in chapter 13.) The official standard for pediatric decision-making is, therefore, the best interests of the child as interpreted by the parents or guardian(s).
It is important to note that simply because a child is not the legal decision-maker regarding his care does not mean that the child has no role in reaching decisions. Children should be included in discussions and decision-making to the degree that their age and maturity allow. In cases where the child is old enough to understand what is being considered, it is important to obtain his assent prior to commencing (or withholding) treatment. In contrast to consent—which involves sufficient understanding of the information presented and the application of reason and values in coming to a decision—assent requires only that the child agree to the plan presented in basic terms appropriate to his cognitive development and emotional maturity (Miller & Nelson, 2006).
Some treatment plans demand the assent of the child and should be deferred if the child is not presently offering it (or cancelled if the child never does). Other treatment plans, however, have such a positive benefit/burden ratio that the withholding of assent by a child with limited DMC should not stand in the way of implementing it. Examples of this include low-burden treatment of life-threatening infections in otherwise healthy children. In such situations, the child should not be asked for his assent but rather informed in developmentally appropriate terms what is going to happen, while being offered control over discretionary aspects of care, such as the setting of care and who will be present when the treatment is provided (American Academy of Pediatrics, 2016). In PPC cases where the complexity of the illness and treatment exceeds the patient’s DMC, the tenuous balance of benefit and burden often render the child’s assent relevant.
The Decision-Maker Is Not Chosen by the Patient
Adults have the opportunity and authority to delegate decision-making responsibility to someone else—known as a health care proxy or agent—should they become unable to do so for themselves (p. 77). By contrast, decision-making for a child is accomplished by someone the child had no choice about: his parents. Historically this stems from the outdated view that children were merely property belonging to their parents (Mason, 1994). Put quite simply,
The laissez-faire mentality that dominated much of American life well into the 20th century gave adults far greater leeway to use children as they wish than we can imagine today. . . . children could be required to work in unregulated industries for as long as their parents deemed appropriate. Protecting children from harm was not a public responsibility. (Guggenheim, 2005)
The last hundred years have clearly brought greater recognition of children’s rights, but the locus of pediatric decision-making appropriately remains with the parents. They (as well as the child) will have to live with the repercussions of any decision, and parents will (ideally) have the fullest sense of what is best for the child (Buchanan & Brock, 1989). Technically, parents provide “permission” rather than consent—since only patients with sufficient DMC and who meet legal requirements can give informed consent (American Academy of Pediatrics, 1995)—but the same requirements for informed consent still apply: voluntariness, appropriate and accurate information, and sufficient DMC (p. 58).
This, however, does not mean that parents have unlimited authority. While a competent adult may refuse any treatment—even for reasons that not everyone would agree with, including personal religious beliefs—the refusal of appropriate treatment for a child constitutes neglect. In such situations, the state has an obligation to intervene to protect the child from harm (the doctrine of parens patriae). As famously stated by the US Supreme Court, “Parents have the right to make martyrs of themselves, but they don’t have the right under the same circumstances to make martyrs of their children” (Prince v. Massachusetts, 1944). The American Academy of Pediatrics (1997) affirms that children—regardless of their own religious beliefs or those of their parents—deserve effective medical care that is not overly burdensome. To emphasize this, in recent statements the academy has shifted from referring to the parental right of decision-making to parental responsibility (American Academy of Pediatrics, 2016).
Best Interest Standard
For an adult who has lost DMC (and it cannot be restored), ideally substituted judgment can be provided by a surrogate decision maker. By contrast, most children do not “lose” DMC. By virtue of age and developmental level, they never possessed it. Logically, then, it would not make sense to try to “restore” something that was never present. It would also not make sense to explore what a child would have decided if he still possessed DMC, since there was never a point in his life when he did. Nor can one accurately predict what a child would one day decide, upon ultimately developing DMC.
The parents are therefore tasked with making decisions in the child’s “best interests,” which has been defined as “acting so as to promote maximally the good of the individual” (Buchanan & Brock, 1989). Rather than being the “last resort” as it is in adult ethics, the best interest standard is the official basis of pediatric decision-making (Berlinger, Jennings, & Wolf, 2013; Larcher et al. 2015).
While acting in the child’s “best interests” may sound good, it is also profoundly impersonal. The values that drive the treatment plan are not the child-patient’s—either directly communicated or inferred by someone close to them—but rather those of someone else. Treatment is based on what the parents believe is in the child’s best interests, which in some cases is unduly influenced by the parents’ own views and may not comport with what the clinical team believes is “best” for the child.
In the real world, however, the best interest standard is not truly representative of how medical decisions are made for pediatric patients. Such decisions generally involve multiple options, whereas “best” interest is, by definition, a superlative. Imagine that there are five possible treatment plans for a patient, involving various combinations of potentially beneficial interventions. And further imagine that the medical staff deem the acceptability of the various options on the following scale:
• Option #1: ideal
• Option #2: almost as good as #1, and acceptable
• Option #3: not quite as good as #2, but begrudgingly acceptable
• Option #4: generally unacceptable by virtue of burden/benefit ratio
• Option #5: entirely unacceptable given lack of potential benefit
According to the best interest standard, the parents would essentially be obligated to choose Option #1. Should they not do so, they would not be acting in the child’s best interests and this could reasonably lead the physicians to report the parents to the appropriate authorities for medical neglect or abuse. Taking “best” literally, therefore, makes a sham of parental autonomy, in that parents are obligated to do what the physicians prefer.
In practice, parents are offered some degree of latitude. They are not required to do what the physicians feel is best but rather what is generally acceptable (based on factors such as the probability of success, the ratio of benefits and burdens, etc.). A more helpful way, then, to approach decision-making for children is by using the “harm principle,” whereby parents are permitted to make choices—even “suboptimal” ones—as long as they are not deemed harmful to their children (Diekema, 2004). Diekema has identified eight conditions which must be fulfilled, in order to justify state interference to prevent harm to the patient (Figure 10.2).
The Decision-Maker May Have Specific Divided Loyalties
It is not unusual for a surrogate decision-maker to have divided loyalties. Consider the loving spouse of a patient who almost surely will not recover and who has expressed a desire to avoid burdensome treatment. Appropriate substituted judgment should lead to a decision to focus on comfort but the fear of losing one’s mate might lead the surrogate to make decisions based on her own emotional needs, rather than what the patient would have wanted.
Divided loyalties are especially common in pediatrics. Studies have shown that parental decisions are influenced by a variety of factors, including emotions, faith, provider relationships, prior knowledge, and changes in a child’s health status (Lipstein, Brinkman, & Britto, 2012). In situations where the burdens of treatment outweigh the benefits, parents are asked to put the well-being of their child above their own feelings and needs. It runs contrary to every human instinct, though, to “let your child go,” even when it has become clear that cure is not possible. Not surprisingly, serious decisions can cause such significant psychological stress as to interfere with decision-making (Benedict, Simpson, & Fernandez, 2007; Miller, Luce, & Nelson, 2011; Pyke-Grimm, Stewart, Kelly, & Degner, 2006) and may also lead to requests for nonbeneficial and even harmful intervention (which is addressed in chapter 14).
Parental decisions are influenced not only by their own feelings but also by conern for the well-being of other members of the family. This raises its own set of questions, including the degree to which the parents’ decisions should be based purely on the best interest of the patient in isolation, or whether they can (or should) take into account the well-being of the family as a whole (Downie & Randall, 1997).
This remains a matter of debate. Ross (1998), for example, has put forth a theory of “constrained parental autonomy,” whereby parents are permitted to make “intrafamilial trade-offs” so long as “the basic needs of each child member is secured.” Others argue that it violates the principle of justice for two children in equivalent medical situations to receive different treatments, based purely on social or familial considerations (McDougall & Notini, 2014).
The latter argument, however, seems to rely on the impractical best interest standard, rather than the more applicable harm principle. As long as parents choose a treatment option that is not harmful, the clinical team is bound to respect their decisions for whatever reason they made it (whether it be social, financial, spiritual, etc.). But when a decision falls below the harm threshold, societal intervention is necessary even when the basis of the decision is understandable and may even be emotionally compelling.
The Clinical Relationship Is a Triad
Finally, the clinical relationship is more complex in pediatrics. In adult medicine, this relationship is generally between the patient and the physician. The other members of the clinical team are often involved—as ideally is the patient’s family—but the fundamental relationship governing decisions is a dyad.
By contrast, in pediatrics the clinical relationship is a triad: patient, parent(s), and physician. This introduces greater complexity, based on who is giving permission (parent) and assent (the child, depending on maturity). Normally a patient would be fully informed about his health status and options, but parents often want to “shield” their child from burdensome knowledge, which developmentally he may not be able to handle. This increased complexity in areas of consent and disclosure can result in significant ethical dilemmas and moral distress (p. 514).
• Pediatric palliative care (PPC) is largely distinct from adult palliative care.
• Distinct diagnoses and illness trajectories exist in pediatrics, as well as unique aspects of treatment and social contexts.
• Perhaps most fundamentally, children “aren’t supposed to die,” leading to a greater tendency toward aggressive treatment than in adult care. Palliative care consultation may come very late in the child’s course of treatment.
• Pediatric ethics is also largely distinct from “adult ethics.”
• The decision-maker is not the patient—nor even chosen by the patient—and may have significant divided loyalties.
• The fundamental paradigm is not respect for autonomy but rather the best interest standard (which in practice is more often actualized as the harm principle).
• The clinical relationship can be more complex, involving not only the patient and physician but also the patient’s parents and perhaps other family members as well.
• Because of these unique qualities, the ethics of PPC merit not merely a passing mention but rather an in-depth analysis.
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1. Children do not all have the same physiology, and thus interaction with medications needs to be evaluated separately for infants, toddlers, children, and adolescents.