New Bill Peace-Related Response – ‘Who would want a child like that?’
August 6, 2012 | posted by Stephen Drake
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.
I find it appalling thhat there doesn’t appear to be a significant change in physicians attitudes in the last 50(+) years. I was born in 1960 with a condition that at that time was often incompatible ith life, and more often incompatible with “normal” intellectual function. My parents were given the option to not treat the condition and to “let nature take it’s course.
In my case, my parents may have been more conflicted than most, since my father was a surgeon and my mother was an obstetrics nurse.They chose a “wait and see” attitude for four and a half months, and then chose to go ahead with the necessary surgery. I did remarkably well physically and mentally until I was 16, when I had further complications resulting from the original condition. These complications led to a more significant physical disability, but had no effect on my cognitive abilities. My dad passed away in January, but about a year before that, he and I talked about the choices that he and my mom faced, and he said that had they had another child with significant medical issues, there choice for that child would be the same – to preserve life and deal with potential medical/disability issues as they occurred.
Wow, Kendall — that makes your survival even a longer shot than mine, I think. Most of what I’ve read from the 60s and 70s leads me to believe that two medical professionals given the option to ‘let nature take its course’ when it came to a baby with spina bifida and hydrocephalus would have gone with that option. Glad they took the ‘wait and see approach.’
The fact that medical professionals are devaluing the lives of disables infants is certainly a manifestation of bigotry towards the disabled but it is equally a consequence of the advocacy of abortion as an ethical choice in our society. I’m not saying that disability activists have to take up the cause of anti-abortion, but they certainly cannot be *proponents* of increased access to abortions and classification of abortion services as “health care”. Well such activists can of course, but they should have no reason to express dismay when a health care professional who believes it’s ethical to abort disabled fetuses also has a bias to letting disabled infants die from lack of intervention. You have pictures on this site of “Healthcare not deathcare”. I could not agree more.
Roger,
I can’t agree that devaluing the lives of disabled infants is related to abortion. Doctors were leaving disabled babies to die in back wards – and writing journal articles about it – long before abortion was legalized in this country. No matter how much assisted suicide advocates – or prolife advocates – want to say there’s an equivalency, an individual’s attitude toward abortion isn’t as great a predictor of their attitude toward assisted suicide, euthanasia and infanticide as you might think. The Final Exit Network has found plenty of support in the bible belt of Georgia where I think that the belief is that ‘mercy killings’ and assisted suicides are private family matters. Lots of ‘prolife’ people are very willing to make an exception when it comes to a ‘defective’ fetus. And, of course, NDY is full of disability activists who identify themselves as prochoice on abortion but are staunchly opposed to assisted suicide and euthanasia.
I was careful to avoid labels which can be ambiguous. I specifically used the phrase “advocacy of abortion as an ethical choice in our society” to be specific about what I meant. One can be an advocate for legal abortion (e.g. “pro-choice”) while still recognize it as unethical and corrosive to respect for rights of disabled and the vulnerable in general.
In any case, I think we both agree that advocates on the pro-life/disabled-rights issues are inconsistent in their stances. I’m simply pointing out that they *are* inconsistent.
I am a strong feminist who is pro-choice. I had an abortion before it was legal, in NYC. It “didn’t work” and the fetus aborted many weeks later, after I decided that anything that wanted to live that badly,I’d let it be. I took medication to stop the labor after my water broke. I’d been told by the NOLA doctor after I returned from NYC still pregnant, who had refused to give me an abortion,f that he knew the pregnancy would self-terminate due to undersize fetus but didn’t bother to tell me. So, my husband and I had traveled to NYC for an abortion in 1965 or 66. I did not want to have a child in the South while doing civil rights work. I would do it all again. I was married when I got pregnant, a real “fluke” as it was two weeks before my annual checkup at Planned Parenthood that I must have conceived due to size change of diaphram contraception.
I strongly support every woman’s right to decide on how to use her body. It has carry-over to being an autonomous person with a severe disability/disabilities. It means that I have the right to choice for my treatment, who would be my caregiver, that I am entitled to good care and government services as a disabled person and as an elder.
There is no dissonance between my being a feminist who is pro-choice and my fight against assisted suicide, which I consider legal murder.
A big part of our problem as disabled people is that medical professionals are ignorant but, as Stephen points out, have the power to kill us, in their stupidity. Their bias begins as consumers of media in their lives, before they go to medical school. Their training does little, if anything, to teach medical personnel about people with disabilities. How many medical professionals are disabled? How many disabled people are allowed/permitted to enter the medical profession or continue working as medical staff,etc. if/when they become disabled?
If disabled people are kept segregated from the general population, omitted or stereotyped/mythed in popular culture: movies, tv, books- fiction and NONfiction, not visible in news, except as stereotypes, “pity cases”, propaganda (distortions) in support of legal murder…how will medical personnel who do the training of new medical workers KNOW ANYONE disabled or anything about us?
I do want to hastily point out, while I remember – having my own cognitive disabling ME/CFS, many people know someone with a disability: a neighbor, a relative and either forget or never “knew” the person as a human being, just see the person(s) with disability as caricatures of persons.
One small example: I was passing along on the radio dial and stopped at a radio shrinks show to listen to movie reviews, two nights ago. (I have no idea why a radio shrink does movie reviews. I am usually not in agreement with the radio shrink, who is BAD on disability – no tolerance for someone who is disabled who calls, low on empathy and ignorant-and she ignored my email sometime ago on ignorance of my disability while she dumped on a caller with the illness). A caller was giving a minireview of a film that should be on a list of overlooked good films. The radio shrink didn’t know the film and the caller said, “Oh, it’s the funny mystery where the maid is deaf and mute and the butler is blind; it is hysterically funny.”. The radio shrink only said, “I don’t know that film.”. And the caller repeated how funny it was. I actually had the DVD and quickly stopped viewing it, in nausea over the basis of the film comedy being disability as butt of jokes.
How do we get the medical profession ON OUR SIDE?
I love the reply, in the article, to who would want a disabled baby? The parent. Indeed. Yet the implication is that the parents are stupid and if they only knew what was coming later…and “later” is made as it is by poor treatment, obstacles and no support for parents/families with children with disabilities. So, how do we get the medical profession to KNOW that people with disabilities are HUMAN?
The question, “Who would want a child like that” comes from a real source. I was told by a compassionate insider that one of my child’s doctors asked this question of his colleagues during a meeting that occurred after her death. A review of records after my daughter’s death revealed that a DNR order had been placed before we had provided consent. This discovery, combined with the the missing records and narcotics and the realization that the information upon which we had based our decision to withdraw treatment was not supported by appropriate diagnostic testing caused us great distress, to say the least. I shared the doctor’s comment with Claire Roy, who penned a perfect response which ultimately was published in a pediatric journal.
In the years following my daughter’s death, two physician-ethicists and I sought to obtain the answer to the question, “who wants a child like that” via a survey of over 300 parents who had children like my daughter. These were parents who very much wanted a child “like that.” The findings revealed that the parents are more educated than the American average but share a similar distribution of religious beliefs and practices. The parents reported that their life was enriched by the presence of their disabled child as were the lives of their other children, whom they believed would grow to be more compassionate, patient and responsible adults. Many parents reported challenges caring for their child, including significant financial hardships. Notwithstanding these challenges, almost all parents informed us that they would make all the same choices again and very few had regrets. The findings of our research were published last month in Pediatrics, the pediatric journal with the highest impact factor. It is the first time that the parental perception of this cohort will be a part of the medical literature.
I believe that increasingly, parents are not given a choice by doctors as they might have been in the past. It seems that children with significant disabilities have fallen into the “futile” category on the basis of disability alone. Doctors are not obligated to offer care that they deem to have no benefit. Indeed, in a recent publication that described a child like my daughter who received life saving care and thrived, a physician responded by describing the outcome as “extremely suboptimal, if not completely futile.” In another recent publication, leaders in the field of perinatology conceded that some children like my daughter could survive, but as there was no cure for their disabilities, mothers must be encouraged to accept comfort care or be told to “go elsewhere” for care of their child.
I don’t think that this trend is entirely the fault of doctors however. The view of most in society regarding the value of children with disabilities is made clear by the prenatal choices that are made when a fetus is discovered to have a ‘less than perfect” profile. In addition, I have heard of examples where parents are pushing the limits of what is generally considered to be acceptable quality of life. For example, I have heard that some parents request no resuscitation for the impending birth of their premature baby if there is a risk of disability even though resuscitation at that gestation is considered to be standard of care.
I think that if we want to find blame it is necessary to look at and also beyond the white coats. It is necessary to investigate the perceptions and choices of society as well as social supports for the disabled, especially in the context of increasing personal and institutional resource limitations. The experience of Bill Peace as described in his Hastings article is strong evidence of a slippery slope. The time for transparent, serious discussion by the medical and disability communities is long past due.