A troubling tale from an adult with a handicap has just been published. (Peace WJ: Comfort care as denial of personhood. Hastings Center Report 2012, 42(4):14-17.) When admitted to an acute care hospital with a serious wound the author was offered the option of not treating the infection by a well-meaning physician who assumed that his life was not worth very much, so he might want to die. He discusses his experience in this article and makes a heartfelt plea that the medical community should listen to the voices of the disabled. He was rather shaken by the assumption that he might be better off dead.
But in Pediatrics and Neonatology we make that assumption all the time. We assume that having a developmental delay as a result of an intracranial hemorrhage is worse than being dead, so withdrawing active care is justifiable. Even when we acknowledge that our predictions are very imperfect, and that many infants with very similar findings might have little impairment, we still offer limitation of care to parents with the goal that the infant will not survive.
Annie Janvier was guest editor of an edition of ‘Current Problems in Pediatrics and Adolescent Health Care‘ last year she asked several parents to write their stories. Many of these stories recount the positive impact of a baby with impairments on their families.
One brief essay was entitled who would want a child like that? (Roy C: Who Would Want a Child Like That? Current Problems in Pediatric and Adolescent Health Care 2011, 41(4):127-127). In response to the question from a doctor which became the title Claire Roy gives an answer which in part is this: ‘A parent wants a child like that … their child … and they want to have every chance to do their job well. They deserve every support medical and social, emotional, and financial that it takes to bring “that child’s” life to fruition, to bring “that child’s” gifts to the world into which “that child,” for whatever reason, chose to enter.’
Neonatal Research 
Delighted you read my essay. It was not easy to write. Over the years I have had many people tell me they would “rather be dead than use a wheelchair”. This sort of statement puzzles me–why share such a thought with a person that uses a wheelchair? I have come to conclude such a statement is grounded in ignorance and is used as a means of social oppression. I can and regularly deal with this sort of discrimination as I perceive disability to be a social problem first and foremost. However, I expect far more from highly educated medical professionals. To know that a physician thought my life was inherently unworthy was a shock. Worse yet, I doubt he is all that unusual.
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This is a fascinating reply for a number of reasons. For one, studies revealing that neonatal professionals have a far more negative attitude toward disability than the parents, family and individuals do is hardly new. Your post indicates that little has changed in terms of professionals giving out life-and-death recommendations based on their own biases. It’s also not a modern problem exclusively. I’m in my late 50s – and the doctor who delivered me (and did some damage in the process) told my parents it would be best for all if ‘nature took its course.’ Fortunately, my parents demanded everything be done.
I have some other reactions to your post (and corrected the two inoperative links) at http://www.notdeadyet.org/2012/08/new-bill-peace-related-response-who-would-want-a-child-like-that.html
Bravo!