Excerpt from "Mom claims in viral blog that disabled child denied transplant," CNN, by Madison Park. January 18, 2012--Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog that this happened to her 3-year-old daughter, and it has sparked Internet uproar.Whether a person with a mental disability qualifies for an organ transplant is a decision made on a case-by-case basis, based on that patient's health, experts say. On Thursday, Chrissy Rivera wrote in the blog wolfhirschhorn.org about her latest doctor's visit concerning her daughter, Amelia. Rivera writes in the blog that Amelia was ruled out from receiving a kidney transplant because of her developmental disability. It's not possible to confirm Rivera's story with the hospital because of privacy protection laws. CNN contacted Children's Hospital of Philadelphia, but the hospital said it had no comment other than a statement posted on Facebook.
"The mental disability should not be the reason why you should not receive a kidney," said de Velasco. The decision should come down to "a medical problem, not the value of the life of a mentally disabled person."On the flip side, patients who have mental disabilities or neurological delays can qualify to be live organ donors after undergoing screening processes and consent from the family.
CMDA CEO David Stevens, MD, MA (Ethics): ""It is ironic that the Americans with Disabilities Act prohibits discrimination on the basis of disability in employment, public accommodations, commercial facilities, transportation and telecommunications, but a child can be denied a lifesaving kidney transplant with impunity. A business can be fined $100,000 because a door is too narrow for a wheelchair, but a transplant specialist can decide a child is not smart enough to receive the hospital’s services."If the parent's report is correct, it is difficult to defend the decision of the Children's Hospital of Philadelphia's (CHOP) transplant team. A study in 2006 showed the success rate of kidney transplants in intellectually disabled children was 100 percent at one year and 90 percent at three years, equaling the rates in the general population.
"The family has agreed to get a donor from among their extended family, but this raises an ethical issue. It is impossible for a child with a tissue match to give informed consent to undergo the risk because of their age. All the same, Amelia should not be kept off the transplant list because of her intellectual disability. Unless there is something specific about her medical condition that we don't know that makes it impossible to do the transplant, CHOP doesn't have a leg to stand on despite their Facebook protestations that they don't discriminate.
"Sadly, an ethic based on 'quality of life' only, is no ethic at all; yet that concept is increasingly creeping into life-and-death decisions in the halls of medicine. A person's worth is not based on their capabilities but the undeniable truth that all are each made in God's image. We all need to advocate for that ethic, or someday as we age and our capabilities decline, someone will decide a quality of life worth living."
I confirm CMDA stance with further objective evidence. When I was a fellow at UCLA we studied the outcomes of kidney transplants in mentally challenged pediatric poplulation. The graft and patient survival were comparable to national data.
ReplyDeleteAmerican Journal of Transplantation 2008;volume 8 Supplement S2:373 abstract #727.
Emad H. Asham, M.D., F.R.C.S.
I generally am very supportive of stances taken in this publication by CMDA and Dr. Stevens. I am concerned that this article is premature in condemning CHOP for their decision making, especially if all the facts are not clearly known. Making life-extending decisions where the resource for extending the life is a limited commodity (available kidneys) is difficult. What if there is an equally deserving child who has a life expectancy much greater than this child if she/he receives the kidney? Does this child's disability put her at the head of the line over another candidate? What do we do with Trisomy 18s who have severe congenital heart disease--do we operate, knowing that the child's long term survival may or may not be extended significantly? Do we do a heart transplant on the Trisomy 18 with hypoplastic left heart when a normal child will die for lack of transplant simply because the child with 18 was born first? I don't know the answers, but I do think this article was too harsh in its attitude toward CHOP (and I have no connection ever to CHOP). I sympathize with the parent's angst, but I do not agree with the tone of the article. We like to think black and white, but this is not a black and white decision as presented.
ReplyDeleteAll I had to base my comments on were the mother's blog post which I encourage you to read clicking on the CNN story. It is very specific in stating her recollection that the child was denied being put on the transplant list now or in the future because of her mental retardation. I agree we don't have both sides of the story and that we never will. The hospital cannot reveal them due to patient confidentiality.
ReplyDeleteI made the point in my original comment that decisions like the one in her case should not be made on the basis of utility alone. There are times that utilitarian analysis is appropriate. Dr. John Feinberg, an ethicist at Trinity International University, outlines the criteria of knowing when it is proper to utilize the "principles of utility" which I've adapted:
• When there are no moral absolutes for or against an action
• When you know your moral duty, but are not sure how to fulfill it (e.g. Golden Rule)
• When there is a conflict between two moral duties, and both cannot be fulfilled
• When you must prioritize duties
• When there are limited resources
More than many, I understand the issue of utility having worked in a mission hospital where in my early days we decided which child would get the limited supply of bottled oxygen or space in our one incubator we powered 24/7.
Unfortunately, in this debate Art Caplan, a well-recognized and respected ethicist, muddied the waters. He contradicted the parents when they said they could get an adult donor among their family members for the child. He mistakenly thought an adult kidney could not be given to a child because of size so she would be thrown onto a donor waiting list and be competing for a donated kidney with everyone else. I actually modified my comment after reading his statement but further research has now revealed that not only can children be given an adult kidney, they actually do better than if they were given one from another child. Stanford's Children's Hospital has led this way in this new technique. Amelia's parents rightly stated that they could likely get a kidney from their extended family.
I agree that there may be elements of her medical condition that make it more dangerous for her to undergo transplant. They have to be evaluated against the risks of chronic dialysis and ultimately death. The point I was trying to make is that selecting transplant recipients on the basis of intelligence alone is unjust and discriminatory.
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David Stevens, MD, M.A. (Ethics)