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.
- Log in to post comments
I have never understood the fear of talking about death. My family had spoken of death since I can remember. Perhaps the fact that they came from Coal Mining country had something to do with it? Death was a constant companion for a very long time in that part of the US.
Of course, they were also dirt farmers with chickens they actually ate. It's hard not to know what death is when you kill a chicken for dinner. Death was seen as the inevitable consequence of life. Perhaps the migration to the city cost us the ability to deal with death?
Even the youngest child (not infant) has some idea of people and things going away and not coming back.
Perhaps I'm odd, wouldn't be the first time that my experience and lens on the world was somewhat different than everyone else.
I think people differ greatly on this issue. For example, if it were completely unidentifiable as my own, I would have no problem with a picture of my naked ass being posted on the Internet. Others would be absolutely horrified by the prospect.
Bir Ã¶nceki Ã¢yet-i kerimede, Ey iman edenler buyurulurken, bu Ã¢yet-i kerimede Ey insanlar Åeklinde hitap edilmektedir. Hitap yalnÄ±z inananlara deÄil, bÃ¼tÃ¼n insanlaradÄ±r. BÃ¼tÃ¼n insanlar, aynÄ± ana-babadan, yani Hazret-i Ãdem ile Hazret-i Havvaâdan meydana geldiler. Bu bakÄ±mdan bir Ä±rkÄ±n diÄerine Ã¼stÃ¼nlÃ¼k taslamaya hakkÄ± yoktur.
Ãyet-i kerimede, tanÄ±Åmakta kolaylÄ±k olmasÄ± iÃ§in, milletlere ve milletler iÃ§inde kabilelere ayrÄ±ldÄ±ÄÄ±mÄ±z ve Allah indinde Ã¼stÃ¼nlÃ¼ÄÃ¼n, MÃ¼slÃ¼manlÄ±Äa baÄlÄ±lÄ±kla Ã¶lÃ§Ã¼leceÄi bildirilmektedir. Araplar veya Yahudiler Ã¼stÃ¼ndÃ¼r denmiyor. BirkaÃ§ Ã¢yet Ã¶nce de MÃ¼minler ancak kardeÅtir buyuruluyor. (Hucurat 10)
AraplarÄ±n veya baÅka bir Ä±rkÄ±n deÄil, yalnÄ±z mÃ¼minlerin kardeÅ olduÄu aÃ§Ä±kÃ§a bildirilmektedir. Hadis-i Åeriflerde de buyuruldu ki:
(AllahÃ¼ teÃ¢lÃ¢, cahiliyet Ã¶vÃ¼nmelerini sizden kaldÄ±rdÄ±. Hepiniz Ãdem aleyhisselamÄ±n evlatlarÄ±sÄ±nÄ±z. Ãdem ise topraktan yaratÄ±ldÄ±.) [Tirmizi]
If some researcher can figure out a clever way of dissociating genetic influences from cultural influences, I personally think it would be enlightening to know about innate differences between sexes. Not in order to justify social stratification, but because it could inform educational strategies, neuropharmacology, etc.