MT is a 16-year-old young man with terminal brain cancer. At the age of 10, he was diagnosed with acute leukemia. After three years of intense treatment, MT was in remission. After two years of remission, during which he was doing very well in school and loved playing soccer, MT began having severe headaches. Unfortunately, his magnetic resonance imaging (MRI) scan showed a large mass requiring immediate workup. The tissue biopsy of the intracranial mass showed a uniformly fatal tumor, likely related to his previous leukemia treatment. No additional intervention was recommended by the team, and they wanted to refer him to hospice.
MTâ€™s parents had heard stories in the media about the unprecedented recovery of children with terminal diagnoses. A national search of experimental protocols for brain tumors revealed two centers that were considering starting aggressive surgical approaches to this devastating diagnosis, but no active studies were open at this time. MTâ€™s parents were thinking about moving him to a different cancer center for another experimental treatment. A close friend of theirs had been successfully treated there after everyone else said nothing more could be done.
MTâ€™s parents did not want him to know he was dying. They insisted on full code status. They forbid the nurses and resident physicians to tell him anything unless the parents were in the room, and they did not allow any conversation about his terminal condition and their recommendations.
When asked by staff, MT seemed to agree with his parentsâ€™ decisions in the past. Recently, however, he began to initiate conversations with the night nurse on the rare occasions when his parents were not in his room. One night MT was particularly agitated and asked to speak to a favorite resident physician who happened to be on call and his nurse, and without his parents present. This was a surprising request from MT; his parents were very upset, but they complied and left the room. MT shared with the resident physician and the nurse that he just accessed his health information from the patient portal that he and his parents signed up for a long time ago, and was upset to learn the name of his new diagnosis, glioblastoma multiforme (GBM). Through an online search, he discovered the extremely poor prognosis. He asked the resident physician directly, â€œAm I dying?â€ The nurse and resident physician had grown close to MT and wondered what they should do.