28.1 introduction.. . . . 431 28.2 Mark’s Story at diagnosis. . . . . 432 . 28 2 1. July.20,.1998. . . . . 432 . 28 2 1 1. .Case.Report.Presented.by.the.Attending.
Physician. . . . . 432 . 28 2 1 2. .Mark’s.Mother.Sue’s.Diary.Entry,..
July.20,.1998. . . . . 432 . 28 2 1 3. .Mark’s.Father.George’s.Conversation..
at.the.Chatterbox.Café,.July.20,.1998 . . . . . . 433 . 28 2 1 4. Mark’s.Email.to.his.Girlfriend,
. . July.20,.1998. . . . . 433 28.3 Mark’s Story after Several relapses . . . . 433 . 28 3 1. January.7,.2000. . . . . 433
. 28 3 1 1. .Case.Report.Presented.by.the.
Attending.Physician
. . at.Tumor.Board. . . . . 433
. 28 3 1 2. .Sue’s.Diary.Entry,..
December.31,.1999.. . . . 433
. 28 3 1 3. .George’s.Conversation.with.his.
Buddies.at.the.Chatterbox.Café,.
January.7,.2000. . . . . 434
. 28 3 1 4. .Mark’s.Email.to.his.Girlfriend,.
January.1,.2000. . . . . 434 28.4 reflections on the concept of assent. . . . . 434 . 28 4 1. .Assent.for.Treatment.and.Assent.for.Research.435 . 28 4 2. Assent.at.Diagnosis.and
. . .Assent.at.Relapse.. . . . 435
. 28 4 3. .Assent.as.Empowerment
. . or.Assent.Negotiated? .. . . . 436 28.5 reflections on the concept of Palliative care. . . . . . 436 . 28 5 1. Professional.and.Family.Roles. . . . . 436 . 28 5 2. .Involvement.of.Adolescents.in.Decisions.About.
Their.Own.Care. . . . . 437 . 28 5 3. .Impact.of.Symptom.Control.on..
Therapeutic.Decisions .. . . . 437 . 28 5 4. Palliative.Care.Issues.at.Diagnosis.. . . . 437 . 28 5 5. Palliative.Care.Issues.at.the.End.of.Life . . . . . 438 28.6 Biological Basis for Ongoing development of compe-
tence in adolescents and young adults. . . . . 438 . 28 6 1. An.Alternate.Scenario. . . . . 439 references . . . .439
28.1 introduction
The issues surrounding clinical decision-making fac- ing families with adolescents and those facing young adults differ from those facing families with younger children and older adults. The nature of the involve- ment of adolescents and young adults in decision- making around his or her own life are summarized in Table 28.1
The extent to which an adolescent is informed, and therefore able to really participate in and consent to therapeutic decisions and interventions, changes radi- cally as the family and the youngster become more educated and sophisticated in the course of their deal- ings with the healthcare system. In this chapter, we would like to use a case approach to explore some of the issues facing the patient, the family, and the medi- cal caregivers [1–3]. “The case itself and the transcripts are fictitious, and not based on a single individual, but are rather an illustrative rendering based an our expe- rience with similar patients.”
The subject of this case study, Mark, was diagnosed with Ewing sarcoma when he was 14 years old. He was to begin his freshman year of high school, expecting to be the forward on his school’s basketball team. His story is told below by his physician, his mother Sue, his father George, and by Mark himself.
ethical issues
for the adolescent and young adult cancer Patient:
assent and end-of-life care
Susan.Shurin.•.Eric.Kodish
contents
28.2 Mark’s Story at diagnosis 28.2.1 July 20, 1998
28.2.1.1 case report Presented by the attending Physician
Mark was referred for evaluation of pain in his left thigh of 6 months duration. My orthopedic colleague reviewed the films taken at the time of referral, and another set from 5 months ago, and found an expans- ile lytic lesion, which had increased in size between February and June. Biopsy showed Ewing sarcoma, and metastatic work-up, including bone marrow, was negative. In a 3-hour family meeting, which included our social worker and nurse practitioner, I explained the diagnosis, the prognosis, and my therapeutic rec- ommendations to Mark and his parents.
Mark was impressively stoic. He allowed his parents to ask medical questions, but had few himself, mostly clarifying how his treatment would affect his school attendance and sports activities. His parents agreed readily to his enrollment on the Intergroup Ewing’s Sarcoma Study (IESS). Mark said he wanted his par- ents to decide about his treatment, and was reluctant to sign the assent form presented, but did so when I
told him we could not begin until he signed the form.
The discussion went well, and therapy will begin as soon as the central venous access device is in place.
28.2.1.2 Mark’s Mother Sue’s diary entry, July 20, 1998
This is the worst day of my life. We spent 3 hour with the doctor and nurse today – I thought it would never end! My beautiful baby has cancer. I cannot believe it – he has always been so healthy! He could die from this disease, he could die from this treatment, and he could lose his leg. His hair will fall out. There is no way he will be playing basketball this fall, and it is all he has ever wanted to do. If only I hadn’t kept working when I was pregnant with him – I’ll bet it is all the chemicals in the hair color I use every day at the shop. Or maybe it is from the pesticides George uses in his landscaping business. He has always made fun of the organic farm- ers – how I wish he had paid more attention and tried to do some of that! And the drugs they are planning to give him – speaking of poisons! One can make him sterile, one will damage his heart, one will ruin his kid- neys, one has major allergic reactions, and they all make his hair fall out. And on top of that, they can give him leukemia! I am just so terrified, I can’t even figure table 28.1 The.nature.of.the.involvement.of.adolescents.and.young.adults.in.decision-making.around.his.or.her.own.life
Principal adolescent young adulthood
Autonomy.(self.determination) Patient.has.only.partial.autonomy,.
shared.with.parents/guardians .Most.
adolescents.in.Western.society.do.
not.have.independent.responsibili- ties,.but.others.have.some.respon- sible.for.them
Patient.has.full.autonomy,.with.right/
ability.to.make.independent.
decisions .Young.adult.may.have.
newly.assumed.responsibilities
Consent Legal.requirement.is.for.assent,.with.
proxy.consent.given.by.parents/
guardians
Legally.able.to.consent.without.
limitation Avoidance.of.harm Ability.of.patient.to.judge.long-term,.
as.opposed.to.short-term.harm,.may.
not.be.fully.developed
Patient.has.more.mature.capacity.to.
see.complexities.and.long-term.
implications.of.decisions
Paternalism Paternalism.may.be.appropriate,.
limiting.the.patient’s.liberty.to.
promote.well-being
Paternalism.–.limiting.liberty.to.
prevent.self-harm.–.is.generally.not.
deemed.appropriate,.and.patients.
may.make.unwise.decisions
out what questions to ask! What am I ever going to tell my mother? She will have a heart attack and die when she finds out. The doctor wants us to agree to all this.
How can we possibly do that? And how can we not, since otherwise, Mark will die? How can anyone expect us to make decisions like this? Thank God George is willing to take charge; I just don’t think I can handle it.
28.2.1.3 Mark’s Father george’s conversation at the chatterbox café, July 20, 1998 What a day! Mark seems to be doing pretty well; he’s my boy, pretty tough. We spent half the day with the doctor. I have no idea how she thinks we can under- stand everything she said today. Reminds me of when I was in the Marines – only lousy choices, either way, he can die. It is just so complicated. The doc was pretty good, though – answered all my questions, I must have driven her nuts. I can’t put Mark in the position of hav- ing to make any decisions about his treatment. I am his father, it’s my job to do that, but that means I need to understand it. They seem to know what they are doing, so I decided we would go along with what she recom- mended. Sue was relieved when I told her I would take care of making the decisions, since I know she has most of the work and it is just too much to ask of her.
What I can’t believe is that they don’t know what causes this? How can a healthy kid get cancer? I bet it was that bone bruise he got when he fell of the snowmobile when he was 9. So, do you think it’s going to rain this weekend?
28.2.1.4 Mark’s email to his girlfriend, July 20, 1998
Hey, Snooks, I can’t tell you how much I miss you!
Guess what? The pain in my leg turns out to be cancer!
I’m in the hospital. They did a million tests. Real pretty nurses, you’d better come rescue me. We met with the doctor today. She says she absolutely expects me to get better, that some people can die from this, but that I won’t. I was scared that they would want to take my leg off, but they don’t even have to do that. She just read a whole long list of drugs, and a lot of nasty side effects.
And later maybe some surgery, and some radiation, but that doesn’t hurt. The guys have told me they will
all shave their heads when my hair falls out, so it will be pretty cool. May not make it to the basketball court this fall, but next fall, for sure. And I may get a tutor, so I won’t have to take biology with that dweeb Turner.
Tomorrow they make me a bionic man with a cool tube in my chest. Not sure why they feel they have to tell me so much information – like I have a choice?
With MY dad? I can hardly bear to look at my mom, though, she’s pretty broken up. They made me sign some silly form saying this is okay with me – can you believe it? Well, whatever. Gotta go, lol Mark
28.3 Mark’s Story after Several relapses 28.3.1 January 7, 2000
28.3.1.1 case report Presented by the attending Physician at tumor Board Mark is a 16-year old boy who presented with non- metastatic Ewing sarcoma in July, 1998. He completed the intensive arm of the IESS, and completed therapy in March, 1999. His 3-month off-therapy evaluation showed bilateral pulmonary metastases, confirmed surgically, without bone marrow involvement. He underwent whole lung irradiation, followed by salvage therapy with cyclophosphamide and topotecan. He had biopsy-confirmation of a tumor in his L5 vertebral body in October, 1999, and then received navelbine.
Mark presented on New Year’s Eve with fever, weight loss, and pancytopenia. Cultures were negative, and antibiotics had no effect. A bone scan shows diffuse abnormalities, and bone marrow biopsy confirms tumor. Options presented to the family include pallia- tive care, NSC #655649, Gleevec, and referral to the National Cancer Institute for immune therapy. The family has an excellent understanding of the gravity of the situation, and seems eager to pursue options for further therapy.
28.3.1.2 Sue’s diary entry, december 31, 1999
I just know the cancer is back. We are back in the hospital, but this does not seem like his usual fever-
and-neutropenia admissions. Mark is exhausted; he just seems to be losing the will to fight. I don’t want him to think I would ever give up, but how can we keep putting him through all this? The nurse-practi- tioner suggested hospice. That is probably the right thing to do, but I can’t tell him he is dying! I wish I knew what he was thinking. He just keeps telling me everything will be okay, and I don’t want to take away his hope. How will I ever live without him? What will happen to George? Mark is his only son, he was sup- posed to keep the business going. If we don’t go for some new treatment, we are abandoning him and let- ting him down. If we go to Washington or New York, we will be in a strange place, with new doctors and nurses, and all Mark really wants to do is hang out with his friends here. He’s just a kid – only 16 – he can’t make these decisions. But it is his life. When I was 16, George and I were already talking about get- ting married.
28.3.1.3 george’s conversation with his Buddies at the chatterbox café, January 7, 2000
Well, fellows, it’s back again. This is the third time – nobody’s talking about cure any more. Sue is a wreck.
She’s smoking again, and has lost 20 pounds. Some weight loss program this is! So, the doc laid it out: we can get these hospice people who will come out to the house, but if we do that, we may not be able to get any other kind of treatment for the cancer. We’d have to work that out with the insurance people. And the kinds of treatment we can get have no track record at all – they don’t even know what the right doses are! They don’t know how much they have to give you to kill you!
And I’m supposed to agree to use these on my kid?
You know, the worst part is that I really don’t know what to do. I’ve been making the decisions because it is too much for Sue, and Mark shouldn’t have to do this. How do we tell him he is going to die? If we don’t go for some new treatments, what kind of hope do we offer him? He’ll think we are giving up on him.
But sometimes, I think he is ready to stop, and that he keeps going with these new treatments so he won’t let us down. Are there right answers to these ques- tions?
28.3.1.4 Mark’s email to his girlfriend, January 1, 2000
Well, Snooks, sorry to stand you up last night – you sure looked pretty all dressed up for that party. Sorry Mom wouldn’t let you come to the hospital with me.
They gave me a couple of bags of blood, and I don’t look so much like Dracula today. Just black and blue.
I think it’s back. My bones all hurt, same as when the back hurt around Halloween. This really sucks.
Pardon my French. I have just had it with all this stuff.
The nurses are great, the docs are okay, but if I never see another hospital room, it will be too soon. I want to stay home, in my own bed, listen to my own music, hang out with you, see the guys. I just know they will come in with a long list of things they can do, none of which will work. The worst part is, I don’t know how to deal with my parents. Dad feels like it’s his job to make the decisions, fix things, all that macho guy stuff. He’ll think I’m criticizing him if I try to make any decisions.
I don’t know how my Mom will live if I die – how can I do this to her? I’ve hurt her just by being rude – now I am supposed to croak on her? If I don’t go for the new! improved! chemotherapy!, I will be letting them both down. I can’t destroy her hope – she is so desper- ate! Any ideas? Sorry to be so morbid, Snooks. Glad I can count on you to listen. Lol, Mark.
28.4 reflections on the concept of assent Mark’s story is powerful, and our language is limited to words like “poignant” and “tragic” to describe the feel- ings generated by the text. To call it “Mark’s story” is itself unfair, because the story also belongs to his par- ents, girlfriend, doctors, nurses, and many others who are touched by their connection to this young man. As such, the narrative presented above stimulates consid- eration of a wide range of ethical issues relating to the care of adolescents with cancer. In this chapter, we cen- ter the discussion on two of the crucial concepts: assent and end-of-life care.
Assent is defined in Webster’s Dictionary as “to agree to something (especially) after thoughtful con- sideration.” This usage has been changed in modern bioethics to reflect agreement without necessarily
expecting the “thoughtful consideration.” This is a direct result of the inflated significance that bioethics has given to the related concept of informed consent.
Driven by a commitment to autonomy, informed con- sent has become a litmus test for ethical propriety.
Assent has unfairly become reduced to the pediatric equivalent of informed consent, a kind of “informed consent-lite.” This unfortunate turn of events does not do justice to the complexity and potential value of a more fully developed notion of assent.
Juxtaposition of two different kinds of assent in three distinctive arenas will help the reader to develop a richer understanding of the potential for assent prop- erly understood. These juxtapositions include: (1) assent for research compared with assent for treat- ment, (2) assent in the context of a new cancer diagno- sis compared with assent after a relapse, and (3) assent viewed as empowerment for adolescents compared with assent understood in the family-centered, negoti- ated context. By applying these juxtapositions to Mark’s case, the significance and complexity of assent as an ethical construct will be clarified.
28.4.1 assent for treatment and assent for research
Assent for treatment must be understood as something different than assent for research participation [4]. For example, assent for treatment is clearly less optional than assent for research. When Mark was diagnosed with nonmetastatic Ewing sarcoma at age 14 years, his parents agreed to his enrollment on a research study.
They also provided consent (parental permission) for treatment. We are told in the narrative that, after expla- nation of the disease and treatment by the physician,
“Mark said he wanted his parents to decide about his treatment.” When he made this request, Mark was sim- ply asking for the substituted decision making that all children need and deserve. Good parents do this natu- rally, in a graduated fashion, as their children transi- tion from infancy to adulthood. For younger children, parents make all decisions. Actual decisions transition from parent to child as children develop decision- making capacity. This oversimplifies the process because of the distinction between trivial and pro- found decisions. While Mark most certainly would
want to and be permitted to decide which movie to see with his girlfriend, he instinctively and appropriately wanted his parents to make a major decision like the one about cancer treatment.
In this case, however, assent for treatment and research was solicited and obtained in a simultaneous (and likely suboptimal) manner. Had Mark refused treatment, his parents and doctor would clearly make every effort to persuade him to accept treatment. If he persisted in refusal, many would argue that treatment should begin despite his protestation based on a “best interests” argument. By contrast, his refusal to partici- pate in research would constitute a very different kind of decision. Because research participation in this (and almost all) contexts is supererogatory, refusal to assent to research should be binding. The reason for this dif- ference is that the goal of treatment is to save Mark’s life, but the goal of research is to save the lives and decrease the toxicities that will happen to other children with Ewing sarcoma. In this way, assent for treatment at diagnosis should be seen as an educational process whereby Mark learns why chemotherapy and radiation are necessary, not given an option about whether or not they should be administered. The federal regulations that guide research involving children define assent as
“a child’s affirmative agreement to participate in research. Mere failure to object should not, absent affir- mative agreement, be construed as assent” [5].
28.4.2 assent at diagnosis and assent at relapse
Mark was 14 years old at the time of diagnosis. During the 17 months that elapsed between his diagnosis and the text dated January 2000, he and his family were transformed in many ways. His ability to provide meaningful assent increased by virtue of both his age and his experiences. When Mark writes about the
“new! improved! chemotherapy!,” his language is both skeptical and cynical, comic and tragic, at the same time. The author of this email is someone who can and should be taking the lead in decisions around his med- ical treatment. This applies to whether the issue is the capability for altruism in the context of a phase I clini- cal trial, or a decision to forego antibiotic therapy in the event of sepsis.
By contrast, Mark was not ready for this decision- making role at the time of diagnosis [6]. The narrative reveals that Mark “was reluctant to sign the assent form presented, but did so when I told him we could not begin until he signed the form.” The fact that it is the physician who insists on the signature for the assent document is disturbing if not outright coercive. What is the ethical basis for compelling this frightened 14-year- old to sign a form that he most likely does not and can- not understand? Rituals can be meaningful and may have symbolic importance, but Mark’s initial email to his girlfriend suggests that this particular ritual had no meaning to the patient himself: “They made me sign some silly form saying this is o.k. with me – can you believe it?” In pediatric oncology, the distinction between treatment and research is often blurred at the time of initial diagnosis. The implications of this ambi- guity include the fact that assent as authorization should have a very limited impact at the time of a new diagno- sis. This is not to imply that assent in the educative function is unimportant in this time period. In fact, had Mark’s doctor been less concerned about the signature on the document and instead spent 15 min of individu- alized one-on-one time with Mark, his feelings and level of initial trust might have been quite different.
28.4.3 assent as empowerment or assent negotiated?
All accounts presented in Mark’s story point to the interrelated web of emotion and connection that reflects the reality of adolescent cancer. One view of assent suggests that older children need to be liberated from decisions made on their behalf by their parents, doctors, or others. This account suggests that assent provides empowerment, and allows us to hear the voice of the patient himself. By contrast, the text sug- gests that decisions are not made in isolation and that each member of the family unit (and to a lesser extent, the healthcare team) is influenced by their perception of the expectations, hopes, and fears of others.
Mark’s mother fears “abandoning him and letting him down.” His father speaks of offering him hope, but also wonders whether “he (Mark) is ready to stop, and that he keeps going with these new treatments so he won’t let us down.” Most importantly, Mark tells his
girlfriend that he may agree to further treatment to avoid “letting them both down.” We are not told, but can only imagine, the thoughts, feelings, and responses of Mark’s girlfriend, his friends, grandparents, siblings, or others who know and love him.
These narratives make it clear that decisions of this kind are not made in isolation. Rather, they are negoti- ated among those who depend on one another, attempting to protect one another from the inevitable pain and anguish associated with cancer in the adoles- cent. Assent must be contextualized in this way, so that well-meaning ethical theories do not lead to unattain- able or hypocritical idealized rules or protocols. The stakes are too high to be carried away with efforts to empower or liberate when a caring, holistic, and com- passionate approach to the care of the patient and his family is required.
28.5 reflections on the concept of Palliative care
28.5.1 Professional and Family roles
There are few places in the practice of medicine in which the role of the doctor as teacher is as sensitive and important as it is in dealing with an adolescent facing a serious illness. The adolescent is not fully competent, but neither is he incompetent. The patient and the family need support to develop the analytic, assessment, and communication skills essential to suc- cessful navigation of the frightening, painful, and overwhelming circumstances in which they find them- selves. Adolescence is an emotional roller coaster even without the added challenges of facing serious illness.
The adolescent’s sense of identity and competence is highly impacted by social and environmental factors, and self-image often reflects both narcissism and pro- found insecurity. The patient is neither fully dependent upon nor truly independent of the family. Profession- als attempting to assist patients and families negotiate these situations often feel as if they are navigating in a hurricane.
Parents and their children have a legitimate interest in each other’s well being. Parental and sibling rela- tionships are covenantal, not contractual; a serious ill-
ness in an adolescent directly affects far more than the patient. Respect for the dynamics of family systems, and of relationships between persons whose egos and identities are not easily separable is essential for the effective management of complex and ambiguous situ- ations. While peer relationships are overwhelmingly important to adolescents, it is usually difficult for friends and classmates to either understand or ade- quately support a seriously ill teenager, especially if the illness interferes with the patient’s ability to engage fully in common activities.
No individual can meet all the complex needs of any person with a chronic illness. The importance of a team approach is hard to overemphasize, as both pro- fessional roles and the personal characteristics of the professionals themselves are important to cover the many areas involved. Key roles can be filled by physi- cians, nurses, social workers, psychologists, spiritual caregivers, and family members and friends. The most important functions are ongoing throughout an ill- ness, and reflect both changing circumstances (relapse, toxicities) and the developmental stages of individuals and families. Key functions include: Accurate diagno- sis; identification of the patient’s and family members’
concerns and therapeutic options; communication of choices to patient and family; establishment of realistic goals; attention to management of symptoms; mainte- nance of hope; preparation for events, which respects the need to prepare for transitions, including the need to say goodbye.
28.5.2 involvement of adolescents in decisions about their Own care An ethical approach to involvement of adolescents in key decision-making regarding their care can be envi- sioned in the same context as involvement of human subjects in research. The principles of ethical practice outlined in the Belmont report [7] include respect for persons, beneficence, and justice. Respect for persons requires both recognition of individual autonomy, and protection of those with diminished autonomy. Appli- cation of these principles is particularly challenging to put into practice when dealing with adolescents, who have diminished, but not absent, autonomy. The stages of cognitive development are fluid throughout life, but
at no time changing more rapidly in ways which impact autonomy than in late adolescence. Ability to learn information, to comprehend the information learned, and to assess risks and benefits change dramatically during adolescence. Frontal lobe development contin- ues well into adulthood, impacting skills in risk assess- ment and comprehension. All of these factors have substantial impact upon the ability of an adolescent to assess the complex issues facing any person with a potentially lethal disease. Emotional development is less linear than cognitive development. Once mas- tered, cognitive skills tend to be retained and depend- ably present, while skills for coping with overwhelm- ing emotions usually come and go.
28.5.3 impact of Symptom control on therapeutic decisions
“Palliative care” addresses issues specifically related to morbidity, rather than mortality. Morbidity encom- passes existential concerns (fear, anxiety, concerns about body image, sexual attractiveness, competence, depression, isolation, and abandonment), symptoms that are caused by the disease itself (pain, weight loss, dyspnea, gastrointestinal symptoms, lack of mobility), and therapy-related symptoms (hair loss, weight gain, nausea, vomiting, and mutilating surgical procedures, including amputation, evisceration, and venous access devices). Adequate attention to relief of symptoms can transform a devastating experience into one that is manageable, and which may even enhance personal growth and intimacy [8, 9].
28.5.4 Palliative care issues at diagnosis At the time of Mark’s diagnosis, the key palliative issues concern control of disease- and therapy-related symp- toms, which impact both quality of life and the ability or willingness of the adolescent to endure potentially life-saving therapy. Mark’s expressed concerns reflect his level of maturity. He clearly comprehends that he has a serious and potentially fatal illness, but his focus is not on death. His major concerns deal with his abil- ity to participate in sports, and the impact of his treat- ment on the issues of immediate importance in his life (school, friendships), and on his parents. Both he and
his parents perceive the key decisions as ones in which their individual interests are totally aligned; this is a crucial point in his willingness to defer critical deci- sions to his parents. He is given full access to necessary information; he is able to focus on his adolescent con- cerns and allow his parents, particularly his father, to focus on the fully adult issues, and to endorse their decisions. Adequate attention to palliation is essential if he is to receive potentially curative therapy. While he may be submitting to rather than embracing toxic therapy, it cannot be administered if he refuses to accept it. Adequate palliation allows him not to focus on the toxicity of therapy or the possibility of a bad outcome [10].
Mark’s situation is particularly fortunate: the family is intact; parents and teenager communicate well; there is no major conflict between Mark and his parents;
Mark is realistic enough to be able to accept the toxici- ties of therapy in search of a longer-term good out- come. This is often not the case, and significant con- flicts challenge the most skillful clinicians to persuade without coercion, to communicate information that a parent or patient may not be developmentally ready to process, and to resolve conflicts that have no satisfac- tory outcome.
For the physician, the primary challenges at diag- nosis are communicating complex information and assisting the family and patient to achieve cognitive mastery and become her partners in achieving a com- mon goal. Respect for autonomy can be demonstrated by providing information, teaching mastery skills, and attending to concerns that are common to most patients in this situation. Offering hope is largely a matter of focusing on the positive aspects of a reality, and minimizing the focus on the seeds of disaster.
Most of the key issues are encompassed in good medi- cal care, and can be addressed by expert nurses and physicians.
28.5.5 Palliative care issues at the end of life After several relapses, Mark no longer has a potentially curable illness. His impending death separates him from his parents [11, 12]. Optimal symptom control extends far beyond offering hope and conveying infor- mation. To adequately demonstrate respect for his
autonomy, the physician must assist Mark and his par- ents as they struggle to communicate with each other.
The poignancy of Mark’s and his parents’ individual narratives highlights the key challenges to such com- munication. Mark now has a very adult perspective on death [13]. He perceives his death not only as it ends his own life, but as it will devastate his parents [14].
Mark and both his parents are clinging emotionally to hope for a miracle, while recognizing cognitively that death is inevitable [15, 16]. All are very fearful that they may be failing each other by accepting the reality of a situation they cannot change.
Acknowledging autonomy requires that the physi- cian in this tragic situation assist the members of the family to understand their own and each others expec- tations. She cannot honestly offer hope for cure. Their real fears of physical suffering, isolation, and abandon- ment must be addressed to provide adequate palliation in this situation [19, 20]. The frequency with which palliation of physical and existential symptoms is inad- equately achieved testifies to the difficulty and com- plexity of managing these complex issues [19–22]. The physician’s work in this situation involves far more than communicating information and ensuring mas- tery. Optimal palliative care to an adolescent at the end of life requires that the patient and key supportive fam- ily members and close friends establish common goals [23–25]. This is not always possible, even with the best medical, nursing, and psychological support [26, 27].
The challenge of facilitating this communication, with- out which it is not possible for Mark or his parents to make decisions that encompass their individual but intensely interlinked lives and psyches, is one of the greatest challenges to the ethical practice of medicine [10, 30, 31] While failure to succeed in this is common and inevitable, it is important for physicians to make a valiant effort to help families achieve the most elusive goal: peace with themselves and each other [33–35].
28.6 Biological Basis for Ongoing development of competence in adolescents and young adults
A robust literature is emerging documenting the extent to which higher executive functions are highly relevant
to the ability of older children and young adults to assume responsibility for decision-making in young adulthood [36, 37]. Two key functions that continue to mature throughout the third decade are executive functions and processing of emotions [38, 39]. Gray matter maturation flows posteriorly to anteriorly, in contrast to the pattern of other measures of brain development, with frontal lobe functions maturating last, showing the largest differences between teens and young adults [40]. The degree of myelination in the adult frontal cortex appears to relate to the maturation of cognitive processing and other executive functions.
In contrast, parietal and temporal areas mediating language, spatial, and sensory functions are largely mature in the teen brain. The corpus callosum increases in size as long as measures of mentation continue to develop, usually into the early part of the fourth decade [41].
Functional magnetic resonance imaging of brain activity of normal volunteers who are imaged while they are identifying the emotions represented on pic- tures of faces demonstrates that young teens activate the amygdala, which mediates fear and other visceral reactions. With maturity, brain activity shifts to the frontal lobe, which is associated functionally with more reasoned perceptions and more mature perfor- mance on tests. On language skill tasks, activation shifts from the temporal lobe to the frontal lobe as teens mature, while functional changes parallel struc- tural changes in temporal lobe white matter[42, 43].
The implications of these findings are that while adolescents may be cognitively capable of processing the information presented with any serious diagnosis, analyzing data, and remembering facts, their ability to organize and use such information is not fully devel- oped, and the extent to which visceral responses may override rational analysis is even greater than it is in fully mature adults. Serious or life-threatening diagno- ses are overwhelming to adults whose competence and right to make decisions about their own lives are not questioned. Over the course of the third decade of life, the ability to assume such responsibility continues to mature significantly in normal persons.
In the light of these developmental processes, con- sider how some of the key issues in decision-making and priorities might be impacted if Mark were a young
adult, instead of an adolescent, at the time of his diag- nosis.
28.6.1 an alternate Scenario
Imagine that Mark were diagnosed at age 24 years, instead of 14 years. He is now 2 years out of college, having married his college sweetheart right after grad- uation. He and his wife bought a house just before their first child, now 1 year old, was born, and expect to have their second child in another year or so. He is a junior associate in a hedge fund firm. Now, he is diag- nosed with Ewing sarcoma, with the same medical data outlined in the history provided.
Mark plays a central role in the economy of his household. As a husband and father, his presence and his income are essential for the security of his wife and child. While he may rely heavily upon his parents in facing this crisis, their role is consultative, and he is unlikely to expect them to make decisions for him. His wife is now his primary partner in making these deci- sions. The young couple has assumed the serious obli- gations of adulthood.
In the United States, a key issue that arises is that his access to healthcare is tied to his employment status, or that of his wife. If he does not have insurance, his family must deplete its resources to make him eligible for Medicaid programs. Either Mark or his wife must be employed with insurance for him to obtain the care that will enable him to have a chance of survival, sup- portive care, and control of symptoms. In a few short years, he has gone from having both responsible adults and social safety nets to buttress him, to making his own decisions and needing to obtain the resources needed to get care. Issues of the couple’s reproductive future, his responsibility for his young family, and his work identity and career development are not hypo- thetical future questions, but pressing and immediate.
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