There’s an interesting new response to Bill Peace’s essay in the Hastings Center Report in which Bill described a very disturbing late-night visit by a physician while Bill was hospitalized for care and complications relating to a stage IV skin breakdown. An excerpt has been posted as a comment on Bill’s response to invited reactions to his essay.
The new response is from Keith Barrington who blogs at Neonatal Research.
After describing Bill Peace’s essay, he continues with a disturbing (to me, anyway) admission. From the post ‘A life worth living? Who would want a child like that?‘:
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.
This was stunning to me.
Back in 2005, I was invited to submit a Perspectives piece in the Hastings Center Report about the Netherlands and the country’s apparent readiness to embrace infancticide. We don’t have a copy of the article up yet on the newly-revamped site, but I hope we’ll get that rectified in the next couple of weeks. The only reason that I bring it up is that I used information from a Canadian study published in 2001 in the essay:
The sentiment for facilitating the deaths of infants with disabilities is evident in numerous research studies. For example, in 2001, Streiner and colleagues published a study in Pediatrics comparing the attitudes of parents and health care professionals in “quality of life” assessments of premature infants. The study found that neonatologists and neonatal nurses were both more pessimistic about pediatric outcomes, and also more likely to judge death to be the best outcome, than were the parents or siblings of the same children. This study, conducted in Canada, is consistent with earlier U.S. studies that have demonstrated a bias on the part of medical professionals in devaluing the lives of infants with severe disabilities. No one should mistake this bias for anything other than what it is an over-valuation of physical and mental norms, which is bigotry.
The evidence that medical professionals are more pessimistic about the ‘quality of life’ of people with disabilities than parents, the individuals themselves, and other family members is not new information.
But it’s possible that Barrington gets that and he isn’t writing to promote the practices of recommending withholding of life-preserving medical treatment based on the assumptions and prejudices of medical professionals. I’m also thankful he didn’t refer to those recommendations as ‘end of life’ decisions and used more honest terminology instead.
Barrington offers resources I want to share here as well (I’ve fixed the broken links in the original post).:
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 …
One can hope that information – in the form of studies like the one I cited from 2001 or in the form of passionate and unequivocal narratives such as Claire Roy’s – can cause at least some medical professionals to modify their beliefs, attitudes and behaviors.
I’m not hopeful of a ‘sea change’ any time soon, though. Medical professionals, like the rest of us, are most often more powerfully moved by their own experiences than they are by factual information and data. Studies tell us that the majority of families who go home with children who had a rough start in life love and value their child, regardless of physical or cognitive ability. But neonatal professionals don’t hear from those folks again and really have no idea how things turn out. The ones they do hear from are the ones who have to keep coming back – due to repeated health crises, chronic treatment issues, etc. Those are the families – especially at a moment when exhausted and discouraged – might express regrets about having pursued aggressive medical treatment. So the fact that medical professionals form a biased outlook about the quality of the lives of disabled people isn’t really surprising.
The real problem isn’t that they form a skewed outlook based on some painful experiences; the real problem is that all too often they confuse their own subjective biases and fears as objective evaluations. It’s that last bit that makes some of them dangerous – and impervious to contrary empirical data.