Update: Hospital Relents: Little Amelia Has Hope for Life - She Can Get a Kidney Transplant !

We have a nice update to a post from a few weeks ago. The post is found here. Basically, the family of 3 YO girl, Amelia Rivera, understood after meeting with their physician that their daughter was being denied a kidney transplant because of her "mental retardation."

CBSNews reported here that The Children's Hospital of Philadelphia issued a joint statement with Amelia's family that "as an organization, we regret that we communicated in a manner that did not clearly reflect our policies or intent and apologize for the Riveras' experience." Amelia's parents said in the joint statement that "despite an unfortunate encounter a few weeks ago, we hold The Children's Hospital of Philadelphia in high regard. Our hope is that this experience will heighten the medical community's sensitivity to and support for the disabilities community."

Let's hope that a suitable donor kidney is found for little Amelia expeditiously and that the transplant goes as smoothly as possible.

Kudos to everyone who inundated the hospital with comments and complaints which surely helped encourage them to get their act together and not to deny a transplant to one of the most vulnerable members of our society.

Scarcity of Kidneys: A Physician Making a Child Ineligible for A Kidney Transplant because of "Mental Retardation"

Read this mother's heart wrenching story here of how a transplant physician at the Nephrology Department at Children’s Hospital of Philadelphia has reportedly denied a little 3 YO girl with a rare genetic disorder the chance of getting a kidney transplant because she is "mentally retarded."
Here is a partial transcript of the emotionally charged conversation according to the mother's account:
(Start Transcript)
[Mom]“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!”

[Transcript Surgeon] “Yes. This is hard for me, you know.”
(End Transcript)

Nobody should pretend to be omniscient, or to "play God", and certainly, nobody should revel in "playing God."
While I certainly understand the mother's position, I can see the physician's position although I vehemently disagree with it. I hope to write an extensive post on why I feel this way.
But, the mother reports she offers to find a live donor.

[Mom]“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

[Doctor] “Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays”
If the family finds a live donor match from their family, surgeons are able to implant even an adult kidney into a child's body by implanting the kidney into a different part of the child's abdomen. (See here to read about cutting edge research being done at Stanford's Lucile Packard Children's Hospital where they have pioneered a method to keep adult kidneys alive even in small children where blood tends to pool and clot in the relatively large kidney causing the organ to stop functioning.)

Assuming the family is able to obtain its own donor, the transplant surgeon should keep his opinion completely to himself... the family is not getting involved with the transplant waiting list so he should not "play God" and pretend to be omniscient...he should allow the parents of this little girl to do everything they want to keep their child alive.

Ethical Dilemnas in Directed Kidney Donations

Should a person be able to donate his or her kidney to whomever they prefer, or should all kidneys go to the next person on the waiting list?

This is a major ethical dilemma. Basically, with one possible caveat, I feel that a person should be able to direct their kidney donation to whomever they see fit. I explain my opinion fully below.

Basically, Douglas Hanto, M.D., a Harvard Medical School physician, is quoted to have said “Organs should go to the person who needs them the most, not to people because they are members of a club.” See Dr. Sally Satel's article about one example of Dr. Hanto's action to try to stop directed kidney donation
here.

Robert F. Hickey, Ph.D. is a big advocate of live donor kidney donation. Dr. Hickey's life was saved by a live donor donation and he zealously advocates for the right of people to direct their live donor organ donation. He debated Dr. Hanto on this topic recently at Harvard University.

Robert F. Hickey asked me about my reaction to a situation that was raised at the debate at Harvard. A certain Rabbi who was in attendance said that he advocates for his congregants to donate their organs [exclusively] to other Jews and (I think) to only accept organs from other Jews. Below is my response to the Rabbi's approach.

"This is what I feel about a Jew, or any other segment of the population directing their donation to their own group. While I feel that their motives may not be completely pure, I care about pragmatic results, not some theoretical morality or utopian concept of altruism. If a Rabbi encourages his congregants to donate organs only to other Jews, I feel he is doing a morally just thing anyways b/c Jews are on the waiting list like everyone else so if he encourages his congregants to give directed donations and thereby increasing the pool of organs available for transplantation, there will be a net gain in organs available for transplantation and therefore it will, in final analysis, help Jew and non-Jew alike by that Rabbi encouraging his congregants to donate their organs to Jews."
"Now, a morally troubled outgrowth from such an approach that may arise would be if there was a non-Jew on the waiting list who would certainly die today without the transplant and a Jew who can still live for a while as he awaits a transplant. I would recommend in that situation to give the organ to the non-Jew (pay the organ forward) and then give the next organ that becomes available on the waiting list to the Jewish person on the waiting list."
"Besides for these reasons, I believe that the Rabbi can legitimize his approach from a personal autonomy/libertarian perspective as well."
"Personally, though, I feel the best thing to do would be to take a different approach. I think that the Rabbi may be misguided because his approach can be interpreted with a xenophobic connotation so I think he would be better off to teach his congregants the economics lesson I shared above so that his congregants will understand that by donating organ, they will help everyone on the waiting list, which will definitionally move all of the Jews on the list closer to getting their transplants as well."

I do think, however, that people will tend to donate organs in greater numbers for people they fell a greater kinship for (like family, friends, coworkers, etc.) so from a behavioral economics perspective, there would probably be an increased number of organs available for transplantation if we encouraged more people to give directed organ donations to people they are close with socially. This would, in final analysis, cause more lives to be saved so I think the Rabbi is doing a positive thing - saving human life.