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Frank, a 13-year-old adolescent at the time of his interview, was adopted at 5 months of age by a family with 4 other adopted special-needs children. At his adoption, Frank carried the diagnosis of failure to thrive.
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Frank was healthy until the age of 10 years, when he experienced 3 months of intermittent migratory myalgias, fever, and 4.5-kg (10-lb) weight loss. Frank was diagnosed as having acute lymphoblastic leukemia (ALL), with biological markers predictive of an excellent prognosis. After a conference at which the health care team, Frank, and his parents discussed his diagnosis, prognosis, and therapy, he started chemotherapy and quickly achieved a complete remission.
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Frank did well until close to the end of his planned therapy at the age of 12 years, when a routine evaluation demonstrated an isolated central nervous system (CNS) relapse. He was reinduced with intensive chemotherapy and craniospinal irradiation. During the last week of radiation, Frank's blood cell counts decreased. His chemotherapy was held, but after 3 weeks of persistent neutropenia, a bone marrow aspirate revealed a second relapse of his ALL.
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Frank again underwent reinduction, but a search for a matched unrelated bone marrow transplant donor was unsuccessful. Reinduction proved difficult, and Frank developed fungal pneumonia with Aspergillus flavus that required an excisional biopsy. Despite rigorous treatment, Frank developed a large pleural effusion, necessitating chest tube drainage. Another bone marrow aspirate demonstrated persistent leukemia.
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Frank and his family were offered 3 treatment options: intensive chemotherapy, which his physicians explained would be extremely risky, with little likelihood of success; less toxic disease-directed therapy with the hope of allowing Frank to experience a good quality of life for a time; or maximum supportive care only, which would focus exclusively on excellent symptom management and quality of life. Frank chose, with support from his family and health care team, to receive option 2, the less toxic chemotherapy that he hoped would not impair his quality of life. He did reasonably well at home for about a month but was then readmitted with sepsis. His family expressed a desire to actively treat his infection with intravenous antibiotics, provide supplemental oxygen, manage his pain, and provide blood products as needed. They agreed that cardiopulmonary resuscitation efforts would cause more harm than benefit, and a do-not-attempt-resuscitation (DNAR) order was written.
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A Perspectives editor interviewed Frank and his mother during Frank's admission for sepsis. Frank's pediatric oncologist, Dr L, was interviewed after Frank had been discharged home.
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FRANK: I'm afraid if I die, my mom will just break down. I'm worried that when I die, I'll miss my family or forget them or something. When I go home, I don't want to tell people that I'm going to die or anything because I don't want to be treated differently.
MS F (FRANK'S ...