Tuesday, March 9, 2010

Selecting Kids with Spina Bifida and Hydrocephalus for Death - Oklahoma, 1977-1982

By now, my lapses in posting to this blog are so predictable that probably apologies are unnecessary. Any attempt would be met with some justifiable scepticism by anyone who has checked the blog from time to time. Apologies usually carry a suggestion one will improve one's past performance - I know better than to offer such promises.

Even today's posting is something of a cheat. I am using this blog as something I can link to on the NDY blog, where I'll be writing about some current suggestions that euthanasia of some children should be legalized. The reasoning is that - since some parents are requesting it and some doctors are doing it - we should make it legal. Somehow, it is reasoned, this will make the practice more open and safeguarded than it is now.

This is not a new argument. Over the past 80 years or so, people with hydrocephalus - especially children - have featured prominently in discussions of what lives are worthy of the medical efforts expended to keep us alive. In fact, when doctors in the Netherlands announced a new "protocol" for killing "seriously ill" infants, all of the babies listed who had been killed had spina bifida and hydrocephalus.

This seems to be a taboo topic at hydrocephalus conferences - spina bifida conferences, too. I am not sure how to explain it. Some of it could be some sort of unacknowledged survival guilt, perhaps. It could also be that many of the organizations "advocating" for people with spina bifida and/or hydrocephalus are dominated by parents and medical professionals. Perhaps it's taboo because some parents have conflicted feelings on the subject of ending the lives of disabled infants. And medical professionals don't ever enjoy criticism of their profession - even if they themselves object to the viewpoints and practices under attack.

Below is a very important chapter in the social, legal and medical history of hydrocephalus and spina bifida. It's a shameful and long episode from a hospital in Oklahoma.

And while this story is pretty well-known in the disability rights community, you'd be very hard pressed to find a discussion of it in a bioethics textbook.

Enough from me - here's the article as it appeared when I posted it online over ten years ago:

This article is taken from The Disability Rag and ReSource vol 15 no. 1 (Jan/Feb) 1994 (pp. 16-18). Advocado Press: Louisville, KY. It is reproduced here with the permission of Advocado Press and the author. (During its 16-year run of publication, it was also titled "The Disability Rag" and "The Ragged Edge" at different times.) The online archives of "The Ragged Edge" can be found at: http://www.ragged-edge-mag.com/.

It Can Happen Here
by John R. Woodward

American doctors once conducted an experiment that proved you can kill the disabled babies of poor families and get away with it. Their research was funded by the Federal Government. Twenty-four babies with spina bifida lost their lives.

The experiment was declared a success. Yes, it can happen here.

Between 1977 and 1982, four doctors and a social worker at the Children's Hospital of Oklahoma, in Oklahoma City, monitored the births of babies with myelomeningocele (the medical term for spina bifida). Parents who were poor were told that it would not be appropriate to treat their baby and given an extremely pessimistic picture of their child's future life. Parents from better-off families were told more about the treatments for spina bifida and given more optimistic - and more accurate - information about their child's potential.

None of the parents knew they were part of an experiment. Parents who were assigned to the "pessimistic outcome" group chose, by a factor of nearly five to one, not to have their babies treated. The experiment was not conducted to prove that babies with spina bifida will die if they are not treated. Doctors already knew that. The goal of the experiment was to prove that the families would accept a "do-not-treat" recommendation from their doctors.

It was no coincidence that the babies who died were the children of poor parents. To select the families for the "pessimistic outcome group," the doctors conducting the study developed a "formula" which they published as part of their write-up in Pediatrics, the most famous and influential medical journal devoted to the care of children. This is their "formula": Quality of Life = Natural Endowment by the contribution of the Home plus the contribution of Society. In a more mathematical style it reads: QL = NE * (H + S). The doctors measured the "H" - the contribution of the home - primarily in financial terms: family income, family debt, employment and employability of the parents, etc. The parents' "intellectual resources," defined in terms of their educational level, were also included in the calculation of "H," which had the effect of crowding the pessimistic outcome group with parents less likely to challenge the doctors' "facts". Since "Natural Endowment" is multiplied by the other factors, rather than added to them, babies with a greater level of impairment (and hence less "natural endowment") were more likely to be placed in the "pessimistic outcome" group.

The "formula" used non-medical factors to decide which babies ought to receive treatment, which should be a medical decision. The use of a mathematical procedure to create the appearance of an empirical foundation for the decision not to treat is not science. It's "scientism," the dressing up of a moral prejudice in the language and trappings of science, so as to lend a false credibility to a value judgment that would otherwise be more readily exposed as a mere prejudice. In this case, the doctors arbitrarily assumed that poor families offered a quality of life so much lower than that of middle- class and wealthy families that babies born into them were better off dead.

Frieda Smith, who gave birth to Stonewall Jackson Smith in 1979, remembers being confronted by a doctor just days after a difficult birth, before she had time to come to terms with her baby's birth impairment.

"He (the doctor) told me that I would always have to take care of him, that he would be blind, that he would never know me, that he was more like some kind of animal than a human being," she says. "He never really sat down with me and explained what the operation would do for Stoney." Ms. Smith was never told that the failure rate for spina bifida treatments is very low, nor did she understand that the operation would reduce the degree of sensory, mobility and intellectual impairment that her son experienced. "He made it sound like Stoney would live longer, but he wouldn't ever get any better."

Ms. Smith signed a consent form agreeing that Stonewall would be fed and given minimal "supportive care," but no antibiotics or surgery. Later, when she had questions about her baby's treatment, the doctor refused to make himself available to answer them. Ms. Smith also says that she did not know that she could have taken her son to another hospital, where he would have been treated at once.

During the five years of the study, 69 babies with spina bifida were born in the Children's Hospital of Oklahoma (now known as Oklahoma Children's Hospital), a teaching hospital affiliated with the University of Oklahoma. Thirty-three babies were recommended for "supportive care" without treatment; eight of them were eventually treated anyway, either because their parents insisted or because their parents or guardians eventually obtained more accurate information. All of the 24 babies whose parents consented to the "supportive care" regimen died. ( a twenty-fifth baby in the "supportive care" regimen was moved out of state by his parents and lost to the study. Two of the eight babies that were eventually treated also died, possibly because the treatments came too late.) Most of the babies who were deprived of treatment were born to women in the welfare system, who were paying for their care with Medicaid benefits. None of the 36 babies that were given antibiotics and surgery died from the effects of spina bifida. (One died in an accident.)

In addition to being poor, many of the families of the children that were chosen to die were poorly educated. Frieda Smith felt that she was manipulated by a doctor who took advantage of her medical ignorance. Her experiences, and the experiences of other mothers whose babies died, raised serious questions about whether they truly gave "informed consent" when they signed the forms agreeing to the "supportive care" regimen. Indeed, some parents came away from their meeting with the doctor under the false impression that the hospital was not required to treat babies who did not meet the "criteria for treatment" (i.e., the formula).

Ms. Smith and her husband John, who are European-Americans, joined two other parents in a lawsuit against the hospital, the Oklahoma Department of Social Services, administrators in both institutions and the doctors and social workers who conducted the study. Cheparney Camp, a Native American, sued over the death of his daughter Melissa, and Sharon Jackson, who is African-American, sued on behalf of her son Carlton. Carlton, in the words of attorney Jane Brockman, "beat the odds." He survived for months in a children's center, where the nurses and attendants cared for him. Eventually, Ms. Johnson insisted that he be treated. However, the months-long delay caused him to develop more severe impairments than he would have sustained if he had been treated within 48 hours of his birth - which is standard procedure.

Sadly, the lawsuit was unsuccessful. The National Legal Center for the Medically Dependent and Disabled, in conjunction with Oklahoma attorneys, represented the plaintiffs through nearly 10 years of hearings and appeals, before the Supreme Court decided, last January, not to hear the case. The plaintiffs began in the Federal Courts with an 11-count complaint, charging wrongful deaths, malpractice, violations of fundamental Constitutional rights, a failure to inform the families that they were participating in an experiment, discrimination under Section 504 of the Rehabilitation Act and other violations of Federal law. Between 1983 and 1990 the courts threw out all the counts. When the Supreme Court refused to reinstate the Section 504 complaint in January, they ended the long legal battle.

"What the Supreme Court could have done by recognizing we had a viable complaint under Section 504 was to send a message to hospitals all across the country, and physicians across the country that you *will* have claims against you if you discriminate against the disabled child in a situation where the treatment is related to that disabling condition," says Jane Brockmann, one of the National Legal Center attorneys who handled the final stages of the case. "We could have scared physicians across the country away from what these physicians did."

Readers of The Rag will recall that the European Holocaust of World War II began with the government-ordered murder of persons with physical and mental disabilities, most of whom were killed by their own doctors. This program began two years before World War II and claimed the lives of over 100,000 Germans with disabilities. Ever since the full scope of the Nazi racial crimes was revealed, Americans have insisted to the world that the mass murder of "undesirables" under the authority of State and Science is a crime of which we are not capable.

Indeed, if there is a difference that stands out between the attitudes of the German doctors who murdered their own patients and the "researchers" at the Oklahoma Children's Hospital, it is this: the German doctors acted in secret, knowing that their crimes must not be exposed. They hid their killings behind an elaborate arrangement of phony death certificates and other official paperwork. The Oklahoma doctors, on the other hand, proclaimed what they had done openly, in the most prestigious medical journal of their specialty. They understood the attitude of the American public towards persons with disabilities. Evidently, they understood it better than we disability rights activists do today! They knew that any furor over their crimes would dissipate without harming their careers, and they knew that in the end their colleagues would admire and emulate them.

"We are beginning to see hospitals going to court, trying to establish `rights' for themselves," says Ms. Brockmann. "Hospitals are seeking the right not to treat some patients." Of course, these patients are persons with disabilities who require expensive, intricate and sometimes long-lasting treatment. In extreme cases, hospitals have sued to have a legally competent parent or spouse removed as the guardian of a person with a disability, so that a new guardian can be appointed to discontinue treatment. Ms. Brockman sees a trend in the courts: "It seems that when a patient with severe disabilities sues to request that treatment be withheld, the courts are inclined to grant that request; but when someone sues on behalf of such a patient in order to continue treatment, they will have an uphill battle. Treatment should be the default decision in ambiguous cases. The Constitution expressly protects the right to live. As Congress begins to debate the role of rationing in health care reform, the court will no doubt rule on more "right-not-to-treat" cases.

Today Carlton Johnson, the boy who "beat the odds," is 10. He attends a segregated educational program for children with disabilities, where he is making progress. He does not communicate by speaking, but he is an alert, active and competent child who wheels himself about and plays for hours on an electric organ his family gave him. He recognizes friends and loved ones. He has the capacity for enjoyment and happiness. His life may not be "useful" according to the pseudo-mathematical standards of the of the doctors who once condemned him to death, but he has one great advantage over the men and women who once plotted to deprive him of his life. He will never, ever commit an act of injustice towards another human being as great as the crime they committed against him.

Further reading: "The Civil Rights of Handicapped Infants," by M.H. Gerry, in Issues in Law and Medicine, a 1985 publication of the National Legal Center for the Medically Dependent and Disabled. The article reporting the results of the "study" is "Early Management and Decision Making for the Treatment of Myelomeningocele," by R.H. Gross et al, in Pediatrics, Vol. 72, 1983.


sanda said...

I miss the Rag; got it on audiocassette, had letters to editor published in mid80s, when I had ME/CFS (not yet diagnosed) on top of allergic asthma.

I will need reread(s)due ME cognitive, but my first reactions: I cried, please add "Jews" to "European" Holocaust, and this story was about the 1970s/80s, not long ago in the distant past. Then I get angry. So thanks for the article.

Found this new posting while checking my typing of the url for someone on a website. No apologies required re time between postings. I understand. Could be me if I get to being able to do a posting #1, chuckle. Thanks. It's a good site.

thecatsmeow said...

Yikes...this is the kind of stuff that's always made me cringe whenever I've come across it in the medical ethics/disability issues/etc. literature over the years. In the back of my head (no pun intended), all I can remember are the various family members and handful of docs who told quite a story about the controversy I caused by being a preemie with hydrocephalus. The stuff left me truly speechless, and that is quite a serious feat! I always said that I was grateful for the one "rebel" who decided I was worth taking a chance on when the rest of them didn't want to even consider operating...even if there are still too many moments (even 37 years later) when I curse the after-effects and excessive curiosity of doctors and other medical types. (I could tell a really weird story about the latter, but I won't!)

astrozombiegirl said...

It's crazy how I found this article. I was doing a search for an electric organ I had as a child and this came up.
What's really crazy is that my Grandmother used to work for the Children's Hospital in Oklahoma City back then.
We have pictures of her working in the nursery and even have a picture of her holding a baby who had Hydrocephalus.
My Grandmother passed away over 10 years ago but I wonder if she knew that was going on? Something tells me she would not have stayed working there if she had.
Wow...It's a small, sad, sad world.

Thanks for the article.....Brandy.

Jennifer said...

I am sitting here looking up something on my 5year old daughter who has Spina bifida and hydrocephalus and I am sick to my stomach on what I have come across...she was born in 2006 and I will always remember our first meeting with the neurosurgeon.. Even at 8 months pregnant he said to me.. They don't send me you guys at 16 weeks because I would tell u to abort your child..I have never cried so hard after that meeting my husband had to come get me out of the bathroom..and then we received a huge bill for that... Disgraceful...she is the most amazing person ever..the rest of the world needs to shut up and let people make there own decisions about life...

Danial Garcia said...

Jennifer I agree with your sentiments. That said, how the doctors that did this experiment and got away with it is rather disturbing. I guess the limits of modern medicine are only too visible.

Jeff said...

I am 53 now and have spina bifida and hydrocephalus. I remember Richard (R.H.) Gross at Childrens in Oklahoma City and the controversy this caused. He wanted to operate on me but my mother wouldnt let him.

Allen said...

I came a cross this story, when I was trying to look up my mom. My mom was Frieda Smith (the one mentioned in this article) I remember her coming home and telling my sister and I that Stoney was sick and the doctor told her that it would be best on the family if Stoney didn't come home but to place him in a medical facility that could care for him. She said that the doctors said that he (Stoney) would not live and that the Bethany Childrens shelter was where he could get the care that he needed. Stoney passed away less than 3 months after he was born at the Bethany Childrens shelter. Years had passed and my parents were watching the news and a story came on about the experiment. My mom started yelling at the TV. They ( the doctors at Childrens) never told us that Stoney could possibly have been saved. They always told my parents that "if" Stoney lived that his quality of life would not be very good...he would never walk, talk, or even be able to recognize anyone. The doctors told my parents that it would just be prolonging the inevitable. My parents not knowing any better, followed the doctors recommendations.