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Friday, January 20, 2012

Disability, Bioethics and Transplantation: Problems Abound

There is a long standing tension between bioethicists and disability rights activists and scholars. The exchanges between bioethicists and disability studies scholars in press and in person are polemical and often mean spirited. These exchanges transcend routine and strongly held scholarly differences. Simply put, there is a deep rooted personal and intense dislike between disability scholars and bioethicists. For example, Stephen Drake commenting on Peter Singer wrote that his "work as it pertains to euthanasia, infanticide, and personhood--the idea that some human beings are persons and others are not--is riddled with sloppiness and even dishonesty. To be fair, those traits aren't Singer's unique domain in the field of bioethics. Bioethics is a field that doesn't seem to demand intellectual integrity and honesty from professionals within its fold". Drake's harsh words are well within the norm. I get Drake's animosity--it is hard for any person with a disability to not take comments by bioethicists to heart.

Bioethicists and disability scholars have radically different views on topics such as growth attenuation, the medical treatment of infants born with disabilities, prenatal testing, life support, and end of life issues to mention a few hotly debated subjects. I hold a pessimistic view of whether bioethicists and disability scholars will ever be able to work together. Distrust runs too deep in spite of the fact bioethicists have made efforts to consider disability as a central issue. Some scholars such as Alicia Quellette in her book Bioethics and Disability contend "disability is now part of the conversation" and no longer a "shadow issue". I think this observation is far too optimistic. I also do not share Quellette's belief that bioethics as a "field is ripe for a change". In my estimation, bioethicists as a group have utterly failed to grasp much less try to overturn the gross injustices people with a disability routinely encounter. Bioethicists pay lip service to what they call the "disability perspective. Such lip service was on display this week when I read and heard comments by Art Caplan about the Amelia Rivera case (According to her parents Amelia Rivera was turned down for a kidney transplant because she has a cognitive disability). Caplan is the Director of the Center for Bioethics at the University of Pennsylvania and seems to be the go to guy when the mainstream press needs a sound bite from a bioethicist. When the Rivera case spread across the internet like wild fire I was disinterested. I was not at all surprised the Rivera family was told their daughter was not a candidate for a kidney transplant because she was "retarded"--not even if the kidney came from a family member. The bias the Rivera family encountered was nothing new to me or parents of children with profound cognitive disabilities. In fact I would characterize the bias against people with a physical or cognitive disability as routine, ordinary even, in the health care system. And this is why Art Caplan gained my attention; in "Serious Issues in Disabled Girl Transplant Case" he wrote just enough to appear unbiased and supportive of people with a disability. For example, Caplan noted "The issue of disability and access to a life-saving transplant merits serious reflection". He continues:

"Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier."

The phrase "morally things get a little stickier" is deeply problematic. Caplan correctly notes the transplant team needed to consider who would care and manage post surgery medications for a person with a cognitive disability. Transplant teams need to consider the long term survival of a person with a cognitive disability who may present other daunting medical conditions. Transplant teams must consider whether a person with a cognitive disability lives in an institution. All these points are valid. Yet I consider his contention that "each case involving a disabled person has to be looked at individually" misleading. If each case was looked at as Caplan suggests why did most transplant programs refuse to even consider a person with a cognitive disability until the mid 1990s. More to the point why are people with cognitive disabilities not often placed on waiting lists for organ transplantation? Could it be institutional and social bias is rampant? The point I am trying to make is Caplan is ignoring important questions that are social and not medical. For example, all people with a cognitive disability should receive adequate health care and support services. This is often not the case. And why do people with a cognitive deficit live in an institutional setting? In my estimation Caplan wants to restrict his observations to medical criteria and ignore all social and cultural variables. I am not suggesting transplant teams ignore medical criteria--I gladly accept these are the primary factors. But we do not live in a medical vacuum. Bias is not left outside the hospital door when medical decisions are made. Thus I find the conclusion to Caplan's essay frustrating in the extreme.

"There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."

Bias against those with a cognitive disability is a given in my estimation. This population's humanity is not acknowledged. People with a cognitive disability do not share the same freedom, equality, dignity, and justice as "normates" to use Garland-Thomson's awkward word. Some scholars have even argued that people with profound cognitive disabilities are nonhuman. As such they do not share the same basic human rights that are enjoyed by those with the ability to reason. To me, such arguments reveal the inherent value of the social model of disability. The "problem" is not a given physical or cognitive impairment but rather the refusal of society to willingly incorporate that difference. This refusal leads to social oppression that is deeply ingrained and has a long history. I am reminded of this history every time I drive to Vermont and pass the boarded up Hudson Valley Psychiatric Center. I shudder every time I pass this facility and wonder how many lives were lost and destroyed. Here is where I depart from Caplan and other bioethicists. For me bioethics and disability scholarship is personal. It is not an interesting intellectual exercise. It is not a job. It is not career. I want to do nothing less than ameliorate bias. I want to live in a world where disability is an accepted and a normal part of the human condition. I want to live in a world where the parents of Amelia Rivera do not make headlines. This is about much more than one little girl and her parents who encountered gross bias. Her story exposes a dark under belly of ingrained social exclusion for those with a cognitive disability. If you think I am being overly dramatic I suggest you read the comments posted to the article by Caplan or those published in USA Today, Huffington Post and other news media outlets. The bias there is shocking and it is a given kidneys do not go to "retards" thereby reinforcing my belief our culture does not value the existence of people like Rivera and me for that matter.

Tuesday, January 17, 2012

Organ Transplants and Disability Discrimination

Disability related blogs are abuzz about a blog entry, Brick Walls, written by Chrissy Rivera. In short, the Children's Hospital of Philadelphia refused to provide an organ transplant for a two year old girl. The child in question has Wolf-Hirschorn Syndrome and needs a kidney transplant within six months to a year. Without a transplant she will die. Wolf-Hirschorn syndrome is a rare genetic condition and involves delayed growth, seizures, and cognitive deficits. According to Rivera, the sole reason her daughter was denied a kidney transplant was because she was "retarded". She was not eligible for any kidney--even a kidney donated by a family member. This story has blazed a trail across the internet, particularly within the "children with special needs" needs community. The mainstream press has picked up the story--reports have been on local television news programs in Philadelphia and USA Today ran a story. The hospital is under a siege of complaints. The hospital Facebook page has been flooded with howls of protests. An online petition has been signed by over 16,000 people and the hospital is in full damage control.

None of the above surprises me. I am not at all surprised the hospital denied a child with a cognitive disability a transplant. I would not be surprised if the hospital denied a person with a physical disability, any physical disability, a transplant. I would not be surprised if I was denied a kidney transplant. The fact is I cannot receive a kidney transplant. After urological surgery in 2010 a rider was put on my health insurance policy that established a kidney transplant would not be covered. People without insurance do not get organ transplants. The facts with regard to organ transplantation and disability based discrimination are simple: organs are rationed, it is unavoidable and we are not worthy. People die waiting for a life saving organ. Hospitals do the best they can to be fair. However it is impossible to ignore value judgments when allocating organs. Should a murderer be eligible? What about a person with a long history of addiction? How old is too old to be eligible? Is a certain level of cognitive ability required? The organization in charge of making these sorts decisions is the United Network for Organ Sharing (UNOS). Debate is becoming more heated with regard to exactly who is eligible for an organ as well as the circumstances under which organs are harvested (see Not Dead Yet post of January 3, 2012). Thus Rivera's heart wrenching story is merely the tip of an iceberg--that proverbial iceberg is couched in some misleading jargon and difficult to disentangle verbiage. For example, below is a statement released by the hospital:

"We want you to know that CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status. Transplant programs at CHOP have never declined a patient for transplant based solely on their cognitive status and we have performed transplants on many children with disabilities and impairments."

The above is a wonderful statement. The only problem is it is patently false or at the very least grossly misleading. The hospital statement goes on to maintains that “all determinations of eligibility for transplantation are treated on an individual basis” using a “non-discriminatory approach, after a multidisciplinary assessment and discussion, which is the standard of practice throughout the country.” Again, a wonderful statement. This may be true but it is grossly misleading. One cannot leave bias and prejudice at the entrance door to hospitals nationwide. What ran through my mind when I read the hospital press release was a story I read about in the mid 1990s. Up until 1995 organ transplantation in individuals with mental retardation (MR) was regarded as a contraindication. Here i am parroting medical journal jargon. In layman's terms doctors believed post transplant care was too complex for a person with a cognitive disability to comprehend and their quality of life was less than a person with "normal" cognition. Blatant bias against people with a cognitive disability came to the forefront when Sandra Jensen, a 32 year-old woman with Down Syndrome was initially denied a heart-lung transplant in 1995.Jensen's application for a transplant was denied specifically because of her MR. Negative publicity flowed forth and advocates for people with cognitive disabilities convinced the hospital to reconsider its position. Jensen received a transplant (she died 18 months later from anti-rejection drug complications). I am afraid Children's Hospital of Philadelphia will do the same thing Stanford Medical Center did with the Jensen case--make it go away and bury it. My only hope is that Rivera's emotional post and searing outrage will not be easily forgotten. I know I will not forget the following:

"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”

No jargon here. This is the unfiltered truth. People like Rivera's daughter have limited access to organ transplants. It is obvious though unspoken that their access is far from equal. Not much has changed since the mid 1990s in my estimation. In 2003 William Bronston, a physician who advocated for Jensen formed a group of scholars and advocates called the National Work Group on Disability and Transplantation. This group conducted a survey among families that cared for a person with a cognitive disability. 80% believed that they were discriminated against regarding access to organ transplants. Powerful and deadly social forces are at work here. A few days ago my friend Stephen Kuusisto described these larger social forces. At Planet of the Blind he wrote:"What is not in doubt is the predatory and heartless social reformation well underway in the United States--a reframing of social Darwinism without apology." Rivera's story is in Kuusisto's estimation "so Dickensian I want to scream". I hope Kuusisto has a great set of lungs for I doubt his screams of protest will be heard.