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SPECIAL ARTICLE |
From the Division of Pediatric Hematology/Oncology and Blood and Bone Marrow Transplantation, DeVos Children’s Hospital, Grand Rapids, Michigan; and Department of Pediatrics and Human Development, Michigan State University College of Human Medicine, East Lansing, Michigan
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ABSTRACT |
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 TOP ABSTRACT DEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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Key Words: adolescents • children • death and dying • decision-making • end of life • minors • palliative care
Adolescence, according to a popular medical dictionary, 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.1 Although succinct and unambiguous, this anatomically oriented definition barely hints at the phase of life actually experienced by teenaged patients and their parents and health care providers. For them, adolescence is a rich, if occasionally tumultuous period of life encompassing not only dramatic changes in physical appearance but also the awakenings 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 anomalies.2 For 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 physical comfort and personal fulfillment that constitute the overarching goals of successful palliative care.
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DEVELOPMENTAL ISSUES |
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TOPABSTRACTDEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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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 continuum, 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 consolidation 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 mood but not severe or persistent behavioral disorders. 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 acquiring a workable concept of death. Younger children 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.7 As summarized 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 encounters with death. Compared with historical cultures, it seems likely that modern children are relatively insulated from direct experience of death because life spans have increased, families are geographically dispersed, and elder care is provided outside the home. For many children, their only encounter with death may be through the mediums of television, movies, and video games. The situation is clearly different for the seriously ill or dying adolescent. 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 before their healthy counterparts. In adolescence, death is understood not only in terms of its personal significance 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, including hair loss, exacerbated acne, swelling, obesity or weight loss, muscle weakness, disfigurements, disabilities, 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 developmental goals of adolescence. Chief among these goals would be the development of personal independence and self-confidence, acquired through gradual separation from parents, and successful functioning in groups beyond the family such as peers, school, extracurricular activities, and employment. 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, prolonged hospital stays, frequent outpatient visits, and even intrusive daily home-medication regimens probably alter the dying adolescent’s normal routines, impede school attendance and socialization, and contribute to a poor self-image as being incapable and radically "different" from their peers. Declining physical strength, physical disabilities, and neurocognitive deficits may pose additional barriers. In keeping with these barriers, Easson11 described several challenges confronting dying adolescents, including a lack of early maturing responsibilities (involving 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 relationships, especially those with the opposite sex).
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ETHICAL AND LEGAL ISSUES |
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TOPABSTRACTDEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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From an ethical and legal perspective, decision-making at the end of life has been more complicated for adolescents than for adults because of the issue of competency (or capacity) to choose for oneself. In the 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, patients 
18 years are empowered to make medical decisions for themselves, 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 understand relevant information and to foresee the implications of one’s decisions, the receipt of sufficient information to allow for an informed choice, and freedom from controlling influence by other persons.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 considered legally competent to make medical decisions for themselves, including those pertaining to end-of-life care. However, many care providers for adolescents and older children have recognized that these patients, especially those who are medically experienced, often demonstrate remarkable insight into their illnesses, prospects for survival, and preferences for how they wish to spend their remaining time. This clinical observation has led to recent attempts to clarify what cognitive elements are necessary for minor patients to demonstrate that they are functionally competent for medical decision-making. Leiken13 and King and Cross14 suggest that functional competence requires the abilities to reason (to consider multiple factors in predicting future consequences), to understand (to comprehend essential medical information), to choose voluntarily (in relation to authority figures such as parents and physicians), 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 consensus representing pediatric health professionals, developmental psychologists, ethicists, and lawyers has emerged, which holds that adolescents approximately 14 years should be presumed, unless demonstrated otherwise, to have the functional competence to make binding medical decisions for themselves, including decisions relating to the discontinuance of life-sustaining therapy and other end-of-life issues.15–17 It 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 active therapy.18,19 This and the consensus noted above support the presumption of decision-making capacity 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 context of terminal illness. Ross20 opposes 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 autonomy, Ross argues that present-day autonomy is what must be sacrificed so that a minor may eventually 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 disagreement about treatment, third-party intervention by the medical team in favor of the minor undermines the critical role of the family in the young person’s life. Similarly, Schoeman21 stresses the importance of family privacy, autonomy, and responsibility 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 circumstances of dying adolescents must be emphasized. 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 interventions. 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 adolescent. 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 some adolescents making certain other personal medical decisions. For example, some states have 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 treatment" statutes allowing minors to authorize treatment for medical conditions they might leave untended 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 capable adolescents the authority to decide for themselves about recommended medical therapy, sometimes against their parents’ views. As discussed by Sigman and O’Connor,24 the latter represent applications 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 minors, and no federal mandates existed to ensure protection 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.15,23 Experience suggests that the majority of terminally ill adolescents and their parents have established, long-term relationships with their care providers and have acquired substantial medical experience through chronic illness. These facts are powerful adjuncts when facilitating a decisional role for a competent adolescent. When solicited in a sensitive and respectful way, many adolescents will share their feelings about impending death and their opinions concerning continued 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 support their autonomy in end-of-life decisions, irrespective 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 decisional authority. In these cases, the decision to discontinue active therapy may be communicated to the responsible adult, who then legally executes the decision by exercising a "modified substituted judgment" (the application of the minor’s expressed preferences in a decision made on his or her behalf).19 The substituted judgment is a legal concept normally invoked for decisions involving previously competent adults who have already revealed their treatment 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 competent adolescents, Weir and Peters15 advocate the use of advance directives to make their wishes explicit 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 serious account is taken of their preferences while final authority rests with the responsible adult. This approach 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.17,25 However, as pointed out by Koocher and DeMaso,26 this can be problematic when applied in practice. If seeking assent essentially 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 assent in the first place. When uncertainty exists about an adolescent’s capacity for decision-making, evaluation 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 important for physicians and other clinicians to recognize how influential their professional roles may be. As discussed by Emanuel and Emanuel,27 genuine autonomy 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 assisting 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 providing counsel as they are helped to understand their options. As discussed later, this approach requires an on-going, open, communicative relationship between the physician and patient/family.
A special problem involving assent for treatment is raised by therapeutic research studies. Especially relevant to adolescents with life-threatening disease are treatments available only in the context of phase I or II studies. In those settings, parental biases could unduly influence enrollment of children in therapeutic studies (although the extent to which this actually occurs in not known). According to the Code of Federal Regulations concerning the protection of human research subjects, a child’s assent is not required for treatment in a therapeutic study as long as the 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 benefit 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 situation, 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 assent 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 treatment 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 observations of the patient/family’s decision-making style in both medical and nonmedical matters. Parenthetically, it should be noted that these principles of assent should apply not only to investigational agents but also to unproven and potentially burdensome interventions of any kind, including various "natural" therapies that may include noxious nutritional 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 distinction 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 requires, 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 ensure that the effectiveness of the palliative-care regimen is not seriously compromised by such choices.
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COMMUNICATION, DECISION-MAKING, AND PSYCHOSOCIAL SUPPORT |
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TOPABSTRACTDEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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As patients mature during adolescence, they become capable of more abstract thinking and can comprehend 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 practice is best instituted during the "normal" care of the chronically ill patient. Depending on preexisting family dynamics, some parents may hesitate to relinquish their ever-presence, although trust in the medical team developed over time usually provides an opportunity. It should be acknowledged, however, that autonomy also develops over time: younger adolescents, 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 communication is one that is flexible, accommodates existing needs of diverse patient-family units, and strengthens the clinical relationship, all while fostering personal growth of the adolescent through his or her experience with illness.
A special communication problem warranting discussion is presented by the parent who opposes disclosure of the adolescent’s transition to terminal illness. Fortunately, such situations seem to be uncommon. As a preventative step, every effort should be made to include parents in the commitment to truthfulness beginning at initial diagnosis. It can be effective for the physician and other care providers to pledge truthfulness to the adolescent in the presence of his or her parents, thus leading by example and establishing the expectation for future interactions. Most parents understand the moral arguments for being truthful, and that knowledge tends to reduce anxiety and increase trust for the adolescent. The rare parent still resisting disclosure when death becomes certain presents a dilemma for the clinician. Physicians especially must inform parents that they are obligated professionally not to lie to the adolescent if directly asked about dying. Simultaneously, positive measures can be taken to support the parents. Their reluctance to be honest often represents their own pain and inability to accept 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 spiritual advisors on how to communicate about dying using metaphorical language and images appropriate to the family’s cultural beliefs and practices.
Like communication, sound medical decision-making is a skill developed over time for most adolescents. It is helpful for the clinician to take advantage 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 principles 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.29 An unspoken message 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 central 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 associated decisions. For an adolescent with relapsed cancer, the "core" decision is whether to pursue additional anticancer treatment. Treatment options may include additional therapy using conventional chemotherapy, surgery, and/or irradiation or investigational 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 making 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 Aspects of care pertinent to such decision-making also have been examined for cystic fibrosis33 and advanced muscular dystrophy.34
Regardless of the underlying diagnosis or specific treatment options that may be available, it is essential 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 approach used at the time of a child’s cancer relapse to communicate essential information regarding disease status, prognosis, and care options. The child is routinely included in the discussion (with the parents’ permission), which is tailored to his or her developmental understanding. Consideration is given to available investigational and palliative therapies, 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 participation 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 provider team. The older adolescent may wish to include his or her significant others in these conferences. 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 incorporate palliative-care strategies into the care plan, with or without continued treatment of the underlying 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 adolescence (early, middle, or late), existing medical condition, anticipated survival time, and preexisting family and other social behavior patterns.
As described by Cooper,37 these teenagers normally experience feelings such as grief, anger, guilt, and fear. However, most of them seem to develop effective coping strategies expressed in healthy behaviors, as described further below. Patients demonstrating transient, situational emotional lability characteristic 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 psychotherapy.37
Although it evolves over time, denial of impending death by adolescents is accepted as universal. They may continue to speak and plan as if there is no question about their ultimate survival even after participating in detailed discussions of their actual situation. However unrealistic their plans may seem, care providers should be understanding of the psychological dynamic involved and gently help them accept the reality of their deteriorating condition. Many teenagers set survival goals around important, upcoming life events such as wish trips, graduation, school dances, or other social functions. In these cases, continued treatment of the underlying disease, even if only partially or temporarily effective, may 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 maintaining a therapeutic rapport with the patient. In my experience, one 19-year-old young man and his fiancée were allowed by his parents to occupy his basement room, as they would have an apartment, before he died of multiply recurrent, metastatic osteosarcoma. 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 acknowledge the deep and lasting impact dying adolescents have on the lives of those close to them. Grief counseling 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 adolescents are similar to those that apply to adults but are influenced significantly by the special considerations already discussed.38 Patients in all phases of adolescence should be given latitude in choosing palliative-care interventions as they see fit. For example, to maintain mental acuity, many adolescents forgo narcotic analgesics and live with pain until the transitional stage of dying. To avoid provoking unnecessary physical discomfort, patients should not be expected to keep routine clinic appointments (although 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 provide 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 infants because of their age-related differences in drug disposition.39
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CONCLUSIONS |
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TOPABSTRACTDEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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I WANT THIS DRUG, DOCTOR! |
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TOPABSTRACTDEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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Mintzes B, Barer ML, Kravitz RL, et al. How does direct-to-consumer advertising (DTCA) affect prescribing? Can Med Assoc J. 2003;169:405
Submitted by Student
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ACKNOWLEDGMENTS |
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FOOTNOTES |
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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{at}spectrum-health.org
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TOPABSTRACTDEVELOPMENTAL ISSUESETHICAL AND LEGAL ISSUESCOMMUNICATION, DECISION-MAKING,...CONCLUSIONSI WANT THIS DRUG,...REFERENCES |
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408. Available at: www.med.umich.edu/irbmed/FederalDocuments/hhs/HHS45CFR46.html. Accessed December 10, 2003This article has been cited by other articles:
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  J. Cassano, K. Nagel, and L. O'Mara Talking With Others Who "Just Know": Perceptions of Adolescents With Cancer Who Participate in a Teen Group Journal of Pediatric Oncology Nursing, July 1, 2008; 25(4): 193 - 199. [Abstract] [PDF]
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 B. Ewing Children's Wishes: Holistic Revelations in Art J Holist Nurs, June 1, 2008; 26(2): 147 - 154. [Abstract] [PDF]
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K. Hendrickson and R. McCorkle A Dimensional Analysis of the Concept: Good Death of a Child With Cancer Journal of Pediatric Oncology Nursing, June 1, 2008; 25(3): 127 - 138. [Abstract] [PDF]
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 T. M. Kremer, R. G. Zwerdling, P. H. Michelson, and B. P. O'Sullivan Intensive Care Management of the Patient With Cystic Fibrosis J Intensive Care Med, May 1, 2008; 23(3): 159 - 177. [Abstract] [PDF]
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E. E. Callaghan Achieving Balance: A Case Study Examination of an Adolescent Coping With Life-Limiting Cancer Journal of Pediatric Oncology Nursing, December 1, 2007; 24(6): 334 - 339. [Abstract] [PDF]
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 P. S. Hinds, D. Drew, L. L. Oakes, M. Fouladi, S. L. Spunt, C. Church, and W. L. Furman End-of-Life Care Preferences of Pediatric Patients With Cancer J. Clin. Oncol., December 20, 2005; 23(36): 9146 - 9154. [Abstract] [Full Text] [PDF]
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 American Society for Parenteral and Enteral Nutrit, and Task Force on Standards for Specialized Nutrit, Jane Balint, Catherine Crill, and Kimberly Klotz Standards for Specialized Nutrition Support: Hospitalized Pediatric Patients Nutr Clin Pract, February 1, 2005; 20(1): 103 - 116. [Full Text] [PDF]
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