The new black

I just finished a rotation in pediatric hematology and oncology, where almost all of the kids I was taking care of had cancer. Most had leukemia or lymphoma with prognoses that were varying degrees of good. A few had other, highly curable solid tumors. Only one kid–a boy I’ve written about here twice before–had a bad cancer. But boy, was it bad.

His tumor, called a neuroblastoma, is a cancer of the sympathetic nervous system. Its prognosis can vary significantly with the age of the patient it affects and with characteristics of the tumor itself. This boy’s problems had started at the age of 3, when he came to the emergency department with a persistent limp. After a month of therapy directed at other diagnoses, some blood tests showed bone marrow leaking into his blood. A bone scan showed lesions in his hip, and the rest of his workup revealed metastases to lungs, liver, brain, and spine. Only three out of every 10 kids with disease like his survive it.

Over the time I was on service, I was called to his room nearly every night I was on call. Every time I walked through the door, I wondered whether he knew how sick he was. Although I know his oncologist discussed his diagnosis with his parents many times, I wasn’t sure that she’d ever discussed it with him. And if she hadn’t, I wasn’t sure that was a bad thing.

Talking about death and dying is the new black–it’s all over medical school curricula, residency program workshops, and newspaper science sections. Still, as a trainee, it’s hard to know how to apply the conversation differently in children than in adults. I do know that abstractions, including death and the future, aren’t as meaningful to young children as they are to grown-ups; should I still try to explain imminent death to the sickest kids?

Probably not. In a fascinating study published in the New England Journal of Medicine in 2004, 429 parents of terminally ill children who had died were asked about conversations and circumstances around their children’s deaths. Parents of young children (aged 0-4 at death) were far less likely to regret not having talked about death than were parents of young adults (aged 16-24 at death). Presuming parents to be the best judges of their children’s comfort–and the harshest judges of their own abilities to provide comfort–this suggests to me some aggregate sense that young children won’t be comforted by verbal communication about death.

In older children, it’s less likely to be developmental concerns that drive us away from talking about death. About doctors’ reluctance to cause pain by revealing a poor prognosis, pediatric hematologist-oncologist blogger Blog, MD writes that ”our fears are our own problem.” Those fears are worth getting over: in the same study cited above, 147 (34%) parents did talk about death with their child, and exactly none of them regretted it.

Ultimately, parents may be our best meter for terminally ill children’s readiness to talk about death. Even if they’re not the most accurate gauges, they are the ones who will stay up nights replaying conversations with their children for years after they’re gone. I’d like them to have had conversations they can live with.

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3 Comments on “The new black”

  1. Susan Says:

    I am one such parent with one such child with relapsed neuroblastoma and you are right about parents being the best meter. There is no way my young child can mentally prepare for death and so I know that my opinion for my son is that death would have to be imminent for me to discuss it with him. All he wants to do is grow up and become and adult. He often asks me when he will grow up. It will break his heart if I tell him that he won’t. I want to let him enjoy life and be a kid and be unburdened as long as possible.

  2. LF Says:

    My 4 yo daughter is wrestling with the idea of death right now because of some recent losses we have experienced. I think for young children, death represents the ultimate independence, separation from mommy and daddy and grandma and school friends, etc. As a person of faith, I’ve tried to talk to her about what heaven might be like, etc. but in her mind, how can there be a heaven without her favorite people and cats and toys around? Conversely, if I die and go to heaven (which can sound like a nice vacation on some days) she can’t understand how I would be happy without her in heaven with me. She has a point. As we get older, faith or no faith, we can mull over the many dimensions of death and dying, the pros and cons, etc. But young children live in the moment, they haven’t learned to resent the world yet, so death is an unthinkable tragedy to them. All that being said, I don’t know whether I would tell Gabbie that she might die if she had a terminal illness or not. I can certainly understand why parents choose not to but I don’t know. Gabbie can usually read my mind like a book anyway, so I kinda wonder if she would figure it out.

  3. Bryan Says:

    I’m not so sure it’s so new. Death was very hip in the late 80’s when I was in med school. We had courses on it, discussed popular literature, etc. There was even a professor specializing in death.

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