Transplant Unplugged: Should Mentally Retarded Patients Receive a Kidney?

The case of Amelia Rivera is viral over the internet and has hit the front pages of most newspapers and cable shows. In a nut-shell, Amelia has Wolf-Hirschhorn syndrome, a rare genetic defect that is associated with a markedly reduced longevity and  physical and mental disabilities. Amelia has kidney failure and is being evaluated for a kidney transplant. (more on this syndrome is available on emedicine here).

Amelia’s mother claims that her daughter is being denied a kidney transplant by the hospital because of her mental retardation - see news article here. According to Amelia’s parents the decision is being determined by a doctor with The Children's Hospital of Philadelphia. They are quoted as saying: “It’s one doctor who’s never seen us who is making this call. We’ve had a great experience with CHOP. We’re not against CHOP, but maybe something needs to be changed. One guy tarnished their reputation.”

CHOP's decision to deny Amelia a kidney transplant has been supported by several voices in the media. Lisa Belkin in Huffington Post writes:

"I do not think Amelia should be put on the waiting list for a transplant.

Kidneys, all human organs, are among the rarest and most precious of the world's resources. The National Kidney Foundation tells us that 104,748 people are currently waiting for a transplant of some kind right now and 4000 names are added to that list each month. Today -- every single day -- 18 people will die while waiting. Each of those patients is someone's child.

The stark reality then, is that a kidney that goes to one patient means it does not go to another. Giving a kidney to Amelia means that someone, whose name you will probably never know, but who will be loved just as fiercely as Amelia is, won't get one in time.

Which is why there are rules -- unemotional, clinical, detached rules -- for a situation that is none of those things. And it is why there are forms like the ones placed in front of Amelia's parents. Amelia is not being denied a donor transplant because she is, as her mother writes, "mentally retarded." She is being denied a donor transplant because she has a cascading syndrome that will shorten and limit her life, meaning that kidney will not "save" her in the way that it might someone who starts out healthier."

In an MSNBC blog, Professor Art Caplan [Caplan is a professor of bioethics at the University of Pennsylvania] writes:

"Those being considered for a transplant must be able to comply with what is required after a transplant — taking a lot of medicines and watching out for early signs of rejection of the transplanted kidney. This means that those with severe mental impairment need willing, round-the-clock helpers so that the transplant has a reasonable chance of succeeding.

Transplant teams also think about the chance for long-term survival, especially when a scarce cadaver kidney is involved. Some severe mental disabilities are linked to genetic problems that create other daunting physical challenges -- bad hearts, severe diabetes, malformed organs, etc., which can drastically shorten lifespan.

Because of that, some transplant programs don't consider operating on those who are facing significantly shortened lives on the grounds that the need for transplants among kids is huge and the scarce supply of cadaver kidneys should be used to save the most lives and the most years of life.

It’s even more complicated when the patient is a very disabled person who resides in a care facility. A child who is immunosuppressed, whose bodily defenses are knocked out to permit the transplant to work, will be put at huge risk of getting a deadly infection if she lives in an institution.

Each transplant case involving a disabled person has to be looked at individually.  All that said, children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected.  And in 1990 Congress passed the Americans with Disabilities Act  which prohibits discriminating against patients solely on the basis of a disability.

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.”

Charles Carmosy an Assistant Professor of Christian Ethics at Fordham University in New York City writes in the Washington Post:

“The hospital’s Facebook page claims that they do not discriminate on the basis of disability, but unless Amelia’s mother is lying or misremembering (and as I have said elsewhere, these are possibilities we should take seriously before making a final judgment) then that policy has been violated. If the decision to abandon Amelia was based on something other than mental disability, the hospital could highlight such reasoning in the abstract and explain that there are medically-indicated reasons (heart problems, complications with using immunosuppressant drugs, etc.) why a child with this kind of disease would not be a good candidate for a transplant without violating confidentiality.

But this is not what happened--at least according to Mrs. Rivera. Her child, despite the fact that the family has donors ready (though having fellow children in the family donate a kidney is a very complicated ethical situation in its own right), appears to have been rejected as a transplant candidate based on her mental capacity. Apparently there is actually a form which has a box for ‘mentally retarded’ which can be checked as a legitimate reason for denial. This suggests that the decision was based on an institutional policy, and indeed, over ten years ago a Salon article highlighted the fact that children even with Down syndrome often cannot get lifesaving transplants simply because they are mentally disabled.

Unfortunately for this hospital and medical team, last week they ran into stubborn parents who, instead of abandoning their disabled child, decided to fiercely to defend her life. Doing so in the age of social media, and during a time when both liberals and conservatives are skeptical of attempts to abandon disabled children, has created a perfect storm of outrage such that this hospital’s decision will likely need to be publicly explained.”

Susan Senator writing in the Huffington Post makes a similarly passionate plea that Ameila should receive a kidney.

Should Mentally Retarded Patients Receive a Kidney Transplant? My own view:

The answer needs to be individualized and depends on Amelia’s prognosis and whether she receives a deceased donor or living donor kidney.

If the parents are asking her to be placed on the deceased donor list then the answer should be no. This is because the patient’s overall prognosis is low – longevity of 1 to 2 years. Giving a kidney to Ameila could potentially deny a kidney to another child with a longer likelihood of survival and/or quality of life.

The other issue that hasn’t been factored in is the comparative survival of Amelia on dialysis versus with a transplant, especially if the the transplant surgery itself or the subsequent effects of the immunosuppressive drugs shortens her longevity. Of course, this has to be balanced against the quality-of-life benefits of transplantation over dialysis.

Lastly, another ethical dilemma is the risk to the donor. If Amelia is approved for a living related kidney it should come from an adult because harvesting a kidney from another living donor who is a child (a minor) raises a whole host of additional ethical dilemmas. 

Aside from the issue of transplanting an adult organ into a child, the longer term effect of harvesting a kidney from an adult needs also to be considered. There is a slight increase in the risk of hypertension and kidney disease among kidney donors. Is the trade-off of a small increase in quality of life for Ameila justified in return for a small but tangible increase in long-term risk for the donor?