SPECIAL ARTICLE
Care of the Dying Adolescent: Special Considerations
David R. Freyer, DO
ABSTRACT. More than 3000 adolescents in the United States die annually from the effects of chronic illness. Providing appropriate end-of-life care for these patients is particularly challenging because of several develop-mental, ethical, and legal considerations relevant to this age group. Developmental issues relate to the ways in which life-threatening illness alters the normal physical and psychological changes associated with adolescence, including attainment of independence, social skills, peer acceptance, and a healthy self-image. Ethical and legal issues arise from the fact that many terminally ill ado-lescents<18 years of age lack ordinary legal authority to make binding medical decisions (including discontinua-tion of their treatment), yet they meet funcdiscontinua-tional criteria for having the competence to do so. In such situations, a broad medical, ethical, and legal consensus supports giv-ing decisional authority to the minor patient. Even when full decisional authority is not appropriate, strong moral arguments exist for taking serious account of the young adolescent’s treatment preferences. In supporting the dy-ing adolescent, an atmosphere promotdy-ing excellent com-munication and sound decision-making should be fos-tered as early as possible during preterminal care and maintained thereafter. Once palliative-care strategies be-come the clinical focus, psychosocial support sensitive to the adolescent’s developmental stage must be pro-vided. Using these principles, clinicians can play a cru-cial role in helping the adolescent, in the face of death, to experience richness of life and the dignity of self-determination. Pediatrics 2004;113:381–388; adoles-cents, children, death and dying, decision-making, end of life, minors, palliative care.
A
dolescence, according to a popular medicaldictionary, is defined as the period of life beginning with the appearance of secondary sex characteristics and terminating with the cessation of somatic growth, roughly from 11 to 19 years of age.1Although succinct and unambiguous, this
ana-tomically oriented definition barely hints at the phase of life actually experienced by teenaged pa-tients and their parents and health care providers. For them, adolescence is a rich, if occasionally tumul-tuous period of life encompassing not only dramatic
changes in physical appearance but also the awak-enings of self-esteem, independence, social skills, and awareness. These critical skills facilitate crossing the threshold into responsible adulthood.
Unfortunately, that destiny is never realized by young people who die during adolescence. Although the leading causes of death in American teenagers tragically include accidents, homicide, and suicide, ⬎3000 other adolescents succumb annually to such chronic illnesses as cancer, heart disease, acquired immunodeficiency syndrome, pulmonary and renal disease, metabolic disorders, and congenital anoma-lies.2For them, adolescence is a paradox of emerging
capabilities and diminishing possibilities. The unique transitional issues raised in this age group must be addressed satisfactorily to realize the phys-ical comfort and personal fulfillment that constitute the overarching goals of successful palliative care.
DEVELOPMENTAL ISSUES
To anticipate certain palliative-care issues, it is helpful to maintain an awareness of normal physical and psychological development in the adolescent. Striking anatomic changes begin with the onset of puberty, including the appearance of breasts, pubic hair, and menarche in girls, and of pubic and facial hair, enlarged penis, and voice change in boys. Both experience the onset of body odor, acne, accelerated linear growth, changes in weight and muscle mass, and feelings of physical attraction to others accom-panied with an awareness of these physical changes as they relate to body image and sexuality.
Several psychosocial and developmental goals are achieved during the course of normal adolescence. Adolescence is often regarded as a single, 10-year stage of development on the road to adulthood. In fact, adolescence represents a developmental contin-uum, within which 3 substages (as summarized by Klopfenstein3 and Hamburg4) can be recognized.
Early adolescence, encompassing the age of⬃10 to 14 years, is focused on a shift of attachment from parents to peers. Middle adolescence, spanning the age of⬃15 to 17 years, is involved with the consol-idation of self-image, feelings of achievement and power, experimentation, and advancement of logical thought with a capacity for abstract reasoning. Late adolescence, extending to the age of ⬃20 years, is characterized by increased sense of comfort with oneself, awareness of others, and appreciation for
meaningful relationships. Hamburg4 summarized
emotionality in normal adolescence as commonly involving relatively mild, transient fluctuations of
From the Division of Pediatric Hematology/Oncology and Blood and Bone Marrow Transplantation, DeVos Children’s Hospital, Grand Rapids, Mich-igan; and Department of Pediatrics and Human Development, Michigan State University College of Human Medicine, East Lansing, Michigan. Received for publication Apr 3, 2003; accepted Sep 2, 2003.
Reprint requests to (D.R.F.) Division of Pediatric Hematology/Oncology and Blood and Bone Marrow Transplantation, DeVos Children’s Hospital, 100 Michigan NE, Mailcode 85, Grand Rapids, MI 49503-2560. E-mail: david.freyer@spectrum-health.org
mood but not severe or persistent behavioral disor-ders. Thus, normal adolescence witnesses a gradual separation from parents, including establishment of emotional and financial autonomy; development of self-confidence, individuality, and sexual identity; and eventually a concern for others coupled with a future-oriented view of the world.3–5
A different but critical developmental step is ac-quiring a workable concept of death. Younger chil-dren tend to view death as temporary, reversible, happening only to others, not originating from within themselves, and possibly caused by previous thoughts and actions.6 Through their exposure to
death as a part of life, all adolescents should achieve an “adult awareness” of death as something that is universal, unalterable, and permanent.7As
summa-rized by Foley and Whittam,7 studies indicate that
these central aspects of death are capable of being understood by children at ⬃8 to 10 years of age. However, an understanding of death and the age when children acquire it are influenced by their en-counters with death. Compared with historical cul-tures, it seems likely that modern children are rela-tively insulated from direct experience of death because life spans have increased, families are geo-graphically dispersed, and elder care is provided outside the home. For many children, their only en-counter with death may be through the mediums of television, movies, and video games. The situation is clearly different for the seriously ill or dying adoles-cent. Work by Bluebond-Langner,8,9 reflecting the
common experience of care providers, has shown that dying children reach an understanding of their own impending deaths as the cumulative result of personal experiences with serious illness and medical treatment. Thus, even early adolescents and younger children with life-threatening illnesses may acquire an accurate understanding of death long be-fore their healthy counterparts. In adolescence, death is understood not only in terms of its personal sig-nificance but also its effect on others.6
As a result of their medical experiences, normal development is altered profoundly in the adolescent with life-threatening or terminal illness. Physical changes normally associated with puberty may be delayed, including menarche, increased stature, and development of physical capabilities. Unwelcome physical changes often result from treatment, includ-ing hair loss, exacerbated acne, swellinclud-ing, obesity or weight loss, muscle weakness, disfigurements, dis-abilities, profound fatigue, and altered mental status. Beyond these physical changes, serious illness and its treatment may substantially interfere with critical life experiences necessary for achieving the normal de-velopmental goals of adolescence. Chief among these goals would be the development of personal inde-pendence and self-confidence, acquired through gradual separation from parents, and successful functioning in groups beyond the family such as peers, school, extracurricular activities, and employ-ment. In a study of children and early adolescents receiving treatment for cancer in first remission, data from Noll et al10 suggest that population is mostly
well adjusted compared with case-matched controls.
It is not clear whether these findings apply to dying adolescents. In addition to the prognosis itself, pro-longed hospital stays, frequent outpatient visits, and even intrusive daily home-medication regimens probably alter the dying adolescent’s normal rou-tines, impede school attendance and socialization, and contribute to a poor self-image as being incapa-ble and radically “different” from their peers. Declin-ing physical strength, physical disabilities, and neu-rocognitive deficits may pose additional barriers. In keeping with these barriers, Easson11described
sev-eral challenges confronting dying adolescents, in-cluding a lack of early maturing responsibilities (in-volving overprotection by parents and learned passivity), the effects of social rejection (self-esteem being undermined by peer nonacceptance), social isolation (resulting from difficulty participating in social, athletic, or intellectual activities), and a lack of sexual outlets (forming of normal interpersonal rela-tionships, especially those with the opposite sex).
ETHICAL AND LEGAL ISSUES
Several ethical and legal issues pertinent to medi-cal decision-making are prominent and characteristic for adolescents with terminal illness. Numerous de-cisions must be made in this setting. The most fun-damental choice is whether to discontinue treatment directed toward the underlying disease. Most dying adolescents will already have considerable experi-ence with treatment of their underlying illness, span-ning months if not years, involving periods of rela-tive wellness punctuated by increasingly frequent periods of progressive debilitation. Each exacerba-tion or recurrence of the illness may have prompted initiation of new therapeutics, perhaps in the context of investigational drug studies. Occasionally, an ad-olescent with a newly diagnosed condition portend-ing an extremely poor prognosis, with or without treatment, may consider not initiating treatment at all. More typically, in the case of chronic illness ex-pected to eventuate in death, a point may be reached where the burdens stemming from continued treat-ment seem, from the teenager’s perspective, to out-weigh its benefits. Once the decision has been reached concerning treatment, choices remain about the elements of palliative care to be used. These include choices about symptom control (medications and other specific interventions), the site of care and dying (home, hospital, or elsewhere), and providers of palliative care (hospice team, family, and/or oth-ers). It should be recognized that the transition from active treatment of the underlying disease to provi-sion of palliative care is gradual, with the latter as-suming an increasing role as death becomes more of a certainty. It is not inconsistent for disease-specific treatment to continue in a predominantly palliative setting, especially if those treatments enhance symp-tom control. An example for cancer patients would be irradiation of tumors causing skeletal pain or airway compromise.
United States, legal competency has been defined by achieving the age of majority, which for ⬎30 years has been designated as 18 years old. Assuming they have appropriate mental capacity, patientsⱖ18 years are empowered to make medical decisions for them-selves, including forgoing treatment that could be life prolonging or even life saving. This right rests on the ethical value of personal autonomy, the state of self-determination. Autonomy has several functional prerequisites including the mental capacity to under-stand relevant information and to foresee the impli-cations of one’s decisions, the receipt of sufficient information to allow for an informed choice, and freedom from controlling influence by other per-sons.12 Autonomy is protected by the instrument of
informed consent. Thus, with informed consent, adults are free to discontinue active treatment of their underlying condition, begin palliative care, and utilize or forgo various elements of care during their terminal course.
In contrast, adolescents⬍18 years old, not having reached the age of majority, are not ordinarily con-sidered legally competent to make medical decisions for themselves, including those pertaining to end-of-life care. However, many care providers for adoles-cents and older children have recognized that these patients, especially those who are medically experi-enced, often demonstrate remarkable insight into their illnesses, prospects for survival, and prefer-ences for how they wish to spend their remaining time. This clinical observation has led to recent at-tempts to clarify what cognitive elements are neces-sary for minor patients to demonstrate that they are functionally competent for medical decision-making. Leiken13 and King and Cross14 suggest that
func-tional competence requires the abilities to reason (to consider multiple factors in predicting future conse-quences), to understand (to comprehend essential medical information), to choose voluntarily (in rela-tion to authority figures such as parents and physi-cians), and to appreciate the nature of the decision (the gravity, immediacy, and permanence of the choice). Leiken13 also stresses the importance of a
child’s conceptualization of death for participating in end-of-life decisions.
Now, slightly over a decade later, a broad consen-sus representing pediatric health professionals, de-velopmental psychologists, ethicists, and lawyers has emerged, which holds that adolescents approxi-matelyⱖ14 years should be presumed, unless dem-onstrated otherwise, to have the functional compe-tence to make binding medical decisions for themselves, including decisions relating to the dis-continuance of life-sustaining therapy and other end-of-life issues.15–17It should be noted that, because of
the “conditioning” effect of chronic illness and its treatment, some experienced pediatric clinicians feel that terminally ill children substantially younger than 14 years, perhaps⬍10, often meet the criteria for having functional competence and should have substantial, if not decisive, input on major end-of-life care decisions, including the discontinuation of ac-tive therapy.18,19This and the consensus noted above
support the presumption of decision-making
capac-ity for terminally ill, cognitively normal adolescents aged⬃10 to 20 years unless there is evidence to the contrary.
It is appropriate to acknowledge cautionary views about granting decisional authority to adolescents, although these views must be evaluated in the con-text of terminal illness. Ross20opposes giving minors
decision-making capacity, because it may sacrifice “long-term autonomy” in the name of “present-day autonomy” through an adolescent’s premature loss of life. Asserting that competency is a necessary but not sufficient condition for respecting a minor’s au-tonomy, Ross argues that present-day autonomy is what must be sacrificed so that a minor may even-tually gain the life and decision-making experience necessary for developing long-term autonomy. Ross also argues that recognizing the specialized claim of an adolescent’s right to decide in a health care matter sets a troubling precedent for adolescent rights in wider society and that, when there is parental dis-agreement about treatment, third-party intervention by the medical team in favor of the minor under-mines the critical role of the family in the young person’s life. Similarly, Schoeman21 stresses the
im-portance of family privacy, autonomy, and respon-sibility rather than child rights in matters involving his or her welfare, and likewise argues against third-party interventions except in the case of a “clear and present danger” to the child. Finally, according to Moreno and Schonberg,22 health care teams must
make every effort to respect and involve family members in treatment decisions concerning even a functionally competent, terminally ill minor.
In responding to these concerns, the special cir-cumstances of dying adolescents must be empha-sized. First, for these patients, there is no prospect for long-term autonomy as there is for fundamentally healthy teenagers expected to recover from an acute condition. The only form of autonomy relevant to the dying adolescent is present-day autonomy typically exercised over a matter of days to weeks, perhaps months. Second, it would seem difficult to predicate a compelling argument for expanding societal rights for minors on the extraordinary circumstances of terminal illness, where the notions of well being and autonomy take on rather different meanings. Third, respect for the autonomy of a functionally competent minor is not inconsistent with involving the family and does not necessarily entail third-party interven-tions. Indeed, it would be considered optimal to achieve the former and avoid the latter whenever possible. However, it also may be necessary for care providers to educate responsible adults in both the medical reality and the ethical values that should come to bear in decision-making by a dying adoles-cent. As discussed later, conflicts between the minor and parents may arise rarely but usually can be avoided.
The legal status of end-of-life decision-making by adolescents is evolving and, at present, inconsistent. As summarized by Weir and Peters15 and Traugott
and Alpers,23 legal rights have been recognized for
statutes allowing decisions by patients who are deemed to be “emancipated minors” on the basis of marriage, parenthood, financial independence, and other circumstances. Some states have “minor ment” statutes allowing minors to authorize treat-ment for medical conditions they might leave un-tended if their parents were to know about them, such as sexually transmitted diseases, pregnancy, and substance abuse. Other states have permitted judicial hearings in specific situations to grant capa-ble adolescents the authority to decide for them-selves about recommended medical therapy, some-times against their parents’ views. As discussed by Sigman and O’Connor,24 the latter represent
appli-cations of the “mature minor doctrine,” a common-law rule that allows an adolescent demonstrating maturity to make medical decisions, including the refusal of life-sustaining treatment. As recently as 1997, over half of all state legislatures had no statutes specifically addressing end-of-life decisions by mi-nors, and no federal mandates existed to ensure pro-tection for all competent minors wishing to make decisions about their end-of-life care.15
Despite the legal inconsistencies noted above, the developmental and ethical considerations previously discussed permit an approach that is reasonable and effective for the vast majority of competent minors needing to make end-of-life decisions. Legal recourse should rarely be necessary to resolve disagreements about treatment preferences.15,23Experience suggests
that the majority of terminally ill adolescents and their parents have established, long-term relation-ships with their care providers and have acquired substantial medical experience through chronic ill-ness. These facts are powerful adjuncts when facili-tating a decisional role for a competent adolescent. When solicited in a sensitive and respectful way, many adolescents will share their feelings about im-pending death and their opinions concerning contin-ued treatment and palliative care. These expressions of preference, when taken seriously by medical care providers and parents, are crucial “efforts of moral persuasion,” as termed by Weir and Peters.15 The
insightfulness of adolescents and children dying of chronic illness can compel responsible adults to sup-port their autonomy in end-of-life decisions, irre-spective of what legal status the minor may have in a particular locale.
Exactly how best to support the minor’s autonomy may vary according to particular circumstances. For older adolescents who clearly meet the criteria for functional competence, they can be given full deci-sional authority. In these cases, the decision to dis-continue active therapy may be communicated to the responsible adult, who then legally executes the de-cision by exercising a “modified substituted judg-ment” (the application of the minor’s expressed pref-erences in a decision made on his or her behalf).19
The substituted judgment is a legal concept normally invoked for decisions involving previously compe-tent adults who have already revealed their treat-ment preferences. Its modified use for “prelegally competent” minors provides adults with a means for enacting the minor’s stated wishes in a decision he or
she cannot yet legally execute. In considering the application of this doctrine for the benefit of minors, it is important to stress that it entails the application of a patient’s previously expressed wishes, values, or preferences, not the opinion of the adult as to what is in the minor’s best interest. For older and fully com-petent adolescents, Weir and Peters15 advocate the
use of advance directives to make their wishes ex-plicit and implement their decisions for end-of-life care.
For younger adolescents who meet some but not all of the criteria for functional competence, they may be given a meaningful decisional role in which seri-ous account is taken of their preferences while final authority rests with the responsible adult. This ap-proach may be applied to the mentally compromised adolescent, as well. As a means for involving these and younger adolescents and children in medical decisions, the notion of assent rather than consent has been suggested.17,25However, as pointed out by
Koocher and DeMaso,26 this can be problematic
when applied in practice. If seeking assent essen-tially confers on the younger patient “veto power” over a recommended care plan, care providers are forced to choose between honoring a poor decision not made competently and disregarding the child’s stated wish, which violates the spirit of seeking as-sent in the first place. When uncertainty exists about an adolescent’s capacity for decision-making, evalu-ation by a clinical child psychologist or psychiatrist should be obtained to ascertain developmental level and cognitive integrity.
In supporting the autonomy of minors, it is impor-tant for physicians and other clinicians to recognize how influential their professional roles may be. As discussed by Emanuel and Emanuel,27 genuine
au-tonomy requires considerable self-understanding. Certain models of the physician-patient relationship promote self-discovery that can be critical for making medical decisions that are morally grounded as well as free.27 For the dying adolescent, an appropriate
approach to enhancing autonomy is one that goes beyond providing merely factual information to as-sisting him or her in recognizing key personal values and how contemplated actions might embody them. Both Weir and Peters15 and Traugott and Alpers23
advise physicians to play an active role in cultivating decision-making capacity in seriously ill adolescents through listening, addressing concerns, and provid-ing counsel as they are helped to understand their options. As discussed later, this approach requires an on-going, open, communicative relationship be-tween the physician and patient/family.
intervention offers potential direct benefit to the child and is only available through the study.28 In
phase I and II studies, the scientific objectives of which are to define toxicity and estimate treatment responses, respectively, the potential for direct ben-efit may be difficult to assess. If its likelihood is exaggerated in relation to the risks, it is conceivable that burdensome investigational therapy could be pursued against the wishes of the child. In this situ-ation, the potential for substantially diminished quality of life requires serious consideration of the adolescent’s opinion regarding continued treatment despite the absence of a federal requirement for as-sent to the research question itself. Because of the unknown therapeutic benefit inherent in phase I and II studies, there may be merit (and legal support) to giving adolescents “veto power” over those treat-ment options. The converse scenario also can occur, in which an informed and motivated teenager who desires continued treatment despite a poor prognosis may be discouraged and unsupported by responsible adults wishing to stop therapy. In each case, special care must be taken to ensure that an adolescent’s true preferences are actively solicited, because there is often a strong desire to please authority figures who may not have expressed their “permission” for the young person to choose autonomously. Clues in this regard can usually be gleaned from previous obser-vations of the patient/family’s decision-making style in both medical and nonmedical matters. Parenthet-ically, it should be noted that these principles of assent should apply not only to investigational agents but also to unproven and potentially burden-some interventions of any kind, including various “natural” therapies that may include noxious nutri-tional supplements, extreme diets, cleansing enemas, and the like. Children can be subjected to enormous pressure to comply with such measures, which often represent the lifestyles and strongly held personal beliefs of adults in the family.
At the heart of the assent issue is Kunin’s29
dis-tinction between “autonomy of action” (as possessed by fully competent minors) and “autonomy of thought and feeling” (as possessed by children of all ages). Respect for autonomy of the latter type re-quires, even for very young children, explanations of all medical procedures and decisions in a sensitive and developmentally appropriate way. It advocates that younger adolescents should have their opinions regarded seriously in treatment decisions made by adults on their behalf. Finally, it implies that younger patients should have control over certain aspects of their palliative care such as analgesics and sedation, antiemetics, other symptom-control medications, routes of drug administration, details concerning their care environment at home, and who may visit and when. At the same time, the clinician must en-sure that the effectiveness of the palliative-care reg-imen is not seriously compromised by such choices.
COMMUNICATION, DECISION-MAKING, AND PSYCHOSOCIAL SUPPORT
The developmental, ethical, and legal consider-ations discussed above influence the actual care of
the dying adolescent. Excellent communication is ar-guably the most important component of care, be-cause it presupposes an attitude of respect, candor, and collaboration on the part of the medical team, which find expression in other aspects of patient management including appropriate medical and nursing interventions. An atmosphere conducive to good communication should be developed early in the course of any child or adolescent diagnosed with a chronic, potentially fatal illness well before the transition to palliative care must be made. Even at initial diagnosis, an agreement to be truthful and forthcoming should be discussed between clinician and parent(s). In this agreement, the clinician agrees always to share all relevant information with the adolescent (in a developmentally appropriate way), and the patient agrees to the same, including asking questions no matter how trivial they might seem to him or her. As the patient’s course unfolds, there will be ample opportunities for both parties to honor their commitments and develop a foundation of mu-tual trust. For reasons discussed further below, it is vital for parents to participate in the truthfulness agreement as well.
As patients mature during adolescence, they be-come capable of more abstract thinking and can com-prehend more complex aspects of their situations. To create conditions favoring both good communication and the development of autonomy, many clinicians excuse adults from the room during the physical examination of an older child or adolescent. As with other techniques of good communication, this prac-tice is best instituted during the “normal” care of the chronically ill patient. Depending on preexisting family dynamics, some parents may hesitate to relin-quish their ever-presence, although trust in the med-ical team developed over time usually provides an opportunity. It should be acknowledged, however, that autonomy also develops over time: younger ad-olescents, and even some in their late teens, might be more comfortable having a parent present during clinical evaluations. In these situations, the clinician must proceed thoughtfully and balance short- and long-term considerations. The best approach to com-munication is one that is flexible, accommodates ex-isting needs of diverse patient-family units, and strengthens the clinical relationship, all while foster-ing personal growth of the adolescent through his or her experience with illness.
when death becomes certain presents a dilemma for the clinician. Physicians especially must inform par-ents that they are obligated professionally not to lie to the adolescent if directly asked about dying. Si-multaneously, positive measures can be taken to support the parents. Their reluctance to be honest often represents their own pain and inability to ac-cept their child’s death. It may be helpful for them to understand that, in all likelihood, their adolescent already knows his or her fate and that truthfulness will draw them closer, possibly helping everyone accept the difficult but inevitable outcome. They should understand that nondisclosure can interfere with an adolescent’s preparatory work before dying. For some parents, a greater level of honesty may be attained by encouraging them to consult trusted spir-itual advisors on how to communicate about dying using metaphorical language and images appropri-ate to the family’s cultural beliefs and practices.
Like communication, sound medical decision-making is a skill developed over time for most ado-lescents. It is helpful for the clinician to take advan-tage of opportunities to promote decision-making experience for both the patient and family. In concert with good communication, beginning at diagnosis there will be situations in which even young children can exercise simple choices appropriate for their level of decisional competency by using the princi-ples described previously. In allowing a child to choose what flavoring to use for his or her oral medication or in which hand an angiocatheter shall be placed, the “autonomy of thought and feeling” is being respected and developed.29An unspoken
mes-sage also is being communicated to the family, for whom this type of medical interaction becomes a positive model. Older adolescents having greater functional competence should be given a more cen-tral role in their decisions from the beginning.
This background of graduated involvement in medical choices prepares the adolescent and family for the crisis of terminal illness and its array of asso-ciated decisions. For an adolescent with relapsed cancer, the “core” decision is whether to pursue ad-ditional anticancer treatment. Treatment options may include additional therapy using conventional chemotherapy, surgery, and/or irradiation or inves-tigational approaches available through research studies. The decision whether to continue or forgo cancer therapy is complex, must balance a number of medical and psychosocial considerations, and cannot be reduced to a simple formula. Guidelines for mak-ing this and other decisions have been offered for children and adolescents with cancer19,30 as well as
for end-stage pediatric rehabilitation patients31 and
adolescents withdrawing from renal dialysis.32
As-pects of care pertinent to such decision-making also have been examined for cystic fibrosis33 and
ad-vanced muscular dystrophy.34
Regardless of the underlying diagnosis or specific treatment options that may be available, it is essen-tial to provide the adolescent with a communication and decision-making forum appropriate for both age and end-of-life concerns. Nitschke et al18,35,36 have
described a successful structure for communication
between clinical staff and the child and family, which he has termed the “final-stage conference.” Used at the Children’s Hospital of Oklahoma since the 1970s, the final-stage conference represents a consistent ap-proach used at the time of a child’s cancer relapse to communicate essential information regarding dis-ease status, prognosis, and care options. The child is routinely included in the discussion (with the par-ents’ permission), which is tailored to his or her developmental understanding. Consideration is given to available investigational and palliative ther-apies, and expectations for the terminal course are described. In Nitschke’s clinical experience, the final-stage conference has been an effective means for conveying essential information, enhancing partici-pation of the child and family in reaching a sound decision, facilitating dialogue within the family unit, and maintaining the family’s trust in the care pro-vider team. The older adolescent may wish to in-clude his or her significant others in these confer-ences. Although the final-stage conference was developed for adolescents and children with cancer, the model, modified as appropriate, is applicable for other adolescent patient populations with chronic, life-threatening illnesses.
Finally, once the decision has been made to incor-porate palliative-care strategies into the care plan, with or without continued treatment of the underly-ing disease, it is necessary to provide the adolescent patient with optimal psychosocial and emotional support. The form this support assumes will depend on factors including the patient’s phase of adoles-cence (early, middle, or late), existing medical con-dition, anticipated survival time, and preexisting family and other social behavior patterns.
As described by Cooper,37 these teenagers
nor-mally experience feelings such as grief, anger, guilt, and fear. However, most of them seem to develop effective coping strategies expressed in healthy be-haviors, as described further below. Patients demon-strating transient, situational emotional lability char-acteristic of normal adolescence can usually be managed with understanding and support from the health care team.4 Those with more profound and
persistent emotional changes reflected in depression, extreme anxiety, severe sleep disorders, seriously dysfunctional relationships, or poor medical choices require intervention by a behavioral specialist and may be candidates for medication and/or psycho-therapy.37
enable patients to experience meaningful events that confer a sense of purpose to their lives, however short. While the patient is still relatively well, the need for peer-group socializing may be met with the help of support groups for teenagers, such as those sponsored by the treating institution or perhaps community groups familiar with terminal illness in adolescents. For some patients, supportive spiritual guidance is highly important. Older teens and young adults may have sexual relationships with significant others that are an important source of emotional support and decision-making influence rivaling that of the parents. This should be respected and used by the clinician in reaching sound decisions and main-taining a therapeutic rapport with the patient. In my experience, one 19-year-old young man and his fian-ce´e were allowed by his parents to occupy his base-ment room, as they would have an apartbase-ment, before he died of multiply recurrent, metastatic osteosar-coma. This enabled the patient to experience in his final weeks the emotional and physical intimacy of a committed relationship, which otherwise would have remained closed to him forever. An important correlate to this discussion is the need to acknowl-edge the deep and lasting impact dying adolescents have on the lives of those close to them. Grief coun-seling and other aspects of bereavement care, such as those characteristic of hospice programs, should be arranged as essential components of follow-up for parents and other loved ones.37
The medical aspects of palliative care for adoles-cents are similar to those that apply to adults but are influenced significantly by the special considerations already discussed.38Patients in all phases of
adoles-cence should be given latitude in choosing palliative-care interventions as they see fit. For example, to maintain mental acuity, many adolescents forgo nar-cotic analgesics and live with pain until the transi-tional stage of dying. To avoid provoking unneces-sary physical discomfort, patients should not be expected to keep routine clinic appointments (al-though occasionally patients desire final visits for more information or to say goodbye to staff). Family, care providers, and other visitors to the home should respect the modesty and need for privacy that is normal for adolescents. If a hospice team is to pro-vide in-home care, an occasional telephone call or home visit from the medical treatment team eases the transition. In addition to physiologic changes arising from the debilitation associated with terminal illness, pediatric clinicians should recall the variations in drug dosing between adolescents, children, and in-fants because of their age-related differences in drug disposition.39
CONCLUSIONS
The terminally ill adolescent presents notable chal-lenges to the palliative-care provider. By recognizing several developmental, ethical, and legal consider-ations characteristic of this age group, an appropriate approach to care can be fashioned by using a care team involving medical and nursing staff, a social worker, psychologist, or psychiatrist, and spiritual advisor. Regardless of the adolescent’s chronological
age, a major focus of this approach should be his or her acquisition of maximal autonomy and decision-making competence, a holistic process that ideally begins long before the crisis of terminal illness but comes to fruition in that setting. If this can be achieved, the care provider will have contributed importantly to the young person’s experience of life despite the sadness of an untimely death.
ACKNOWLEDGMENTS
I appreciate the valuable suggestions of Drs Brian Carter, Joanne Hilden, and Robert Noll.
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I WANT THIS DRUG, DOCTOR!
“Direct-to-consumer advertising (DTCA) of prescription drugs has increased rapidly in the United States during the last decade, yet little is known about its effects on prescribing decisions in primary care. We compared prescribing deci-sions in the US setting with legal DTCA and a Canadian setting where DTCA of prescription drugs is illegal, but some cross-border exposure occurs. . . . Our results suggest that more advertising leads to more requests for advertised medicines, and more prescriptions. If DTCA opens a conversation between patients and physi-cians, that conversation is highly likely to end with a prescription, often despite physician ambivalence about treatment choice.”
Mintzes B, Barer ML, Kravitz RL, et al. How does direct-to-consumer advertising (DTCA) affect prescribing?Can Med Assoc J. 2003;169:405
DOI: 10.1542/peds.113.2.381
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