Saturday, January 13, 2007

Misty Cargill

NPR recently told the story of Misty Cargill, a 25-year-old woman in Oklahoma who will soon need a kidney transplant, but was rejected by Oklahoma University Medical Center's transplant program as a candidate. The most notable part of her story is that Misty also has mental retardation and lives in a group home. The biggest concern brought up is discrimination, which in this form should have no place in any transplant program. This concern prompted a Christmas Day editorial by Timothy Shriver, chairman of the Special Olympics, in the Washington Post.

The medical perspective appears straightforward--Misty has a condition that will lead to end-stage renal disease, and appears to be in good enough overall health to undergo and live with a kidney transplant. We don't know this firsthand, but it's been reported widely and not disupted by any party.

The legal perspective is a conundrum. The hospital said in a statement that the reason they won't list her for a transplant is that they don't believe she's capable of making her own decisions and giving informed consent. But the county department of Adult Protective Services refused to assume guardianship, stating that she is capable of making her own decisions and giving informed consent.

The ethical perspective is worrisome. Not being inside this case or the process, I have no way to judge Misty Cargill's suitability for a kidney transplant. But from the outside, there's a young woman who appears to be a suitable transplant candidate and is being met with rejection, allegations, curt and carefully prepared statements, evasive and illogical responses, and hurdles and brick walls. Not the kinds of things that would make the average person confident in the trustworthiness of the system, the process, or the institutions and individuals involved.

This issue has come up before, in more extreme circumstances. In 1995, Sandra Jensen was denied evaluation for a heart-lung transplant by UCSD and Stanford, solely on the basis of low IQ. Her landmark case prompted intense reactions from Down syndrome advocates, and she was eventually evaluated and transplanted. Perhaps the best message to come out of it was the statement of the medical director of Stanford's lung transplant program: "We rejected her out of hand, based on a label. That was wrong, and I'm willing to admit that." A similar statement ten years later would be just as powerful.

While no one should hold their breath for such a statement, there have been more recent reports about this story. Misty's local paper, The Duncan Banner, reported on her initial reaction to the NPR story. A more recent report has even more information, most of it positive. Another transplant center has offered to evaluate Misty, offers have come for lawyers or picketers (hey, this is America!), and two strangers and four relatives have volunteered to be evaluated as kidney donors.

Ultimately, Misty Cargill's vulnerability to the transplant system is not that unique. Even if someone's IQ is 146 (double of Misty's 73), would they want to be under the care of the center in question? They'll be just as unconscious during the surgery, almost as dependent on the professionals at the transplant program for advice and guidance, and could suffer just as much from any misjudgements on their part. My hope for her, like all transplant patients, is that she gets the best care possible and the full support of the transplant community and those around her to lead a healthy life.


LindaW said...

I must have been asleep because I missed all the publicity about Misty Cargill. However I did read James Reston's book about his daughter and his quest to get her a new kidney. She is developmentally disabled and eventually got a cadaver kidney in Iowa. Very interesting story. She probably faced a lot of discrimination even with a famous father advocating for her.

Shelly said...

I have not heard of this story before, but the thought of it makes me sick to my stomach! How can they decide who deserves to have a transplant based only on the fact that she's mentally retarded?

In the past I emailed with a mother who's son had many other health issues, including mental retardation. They had to fight tooth and nail to get their son to even have dialysis! Then the father wanted to donate a kidney, and again they had to fight the system in order for their son to have a chance.

He had overcome so many things in his life, done more than any of his doctors said he would. He was born without feet, but he learned to walk on his own!

He did get his transplant. Sadly he passed away several years later due to complications with another medical problem (not related to his transplant or kidneys).

My own son has autism and even though his IQ is 81, he has trouble with many self care things. He was born with kidney failure and after 4+ years on dialysis, I was able to donate a kidney to him. He was 5 years old and had not yet been officially diagnosed with autism. If he had, would they have refused to let him have a transplant? He is now almost 15 years old and will celebrate his 10 year transplant anniversary June 17, 2007! Were those 10 years a mistake due to his disability?

As long as Misty is healthy enough for a transplant and is living in a group home (where she gets support with self care and living skills), why shouldn't she get a transplant!

Someone might say that there are only a certain number of cadaveric kidneys and they should go to someone else (awful....), but if there is a living donor that wants to donate to could anyone have a problem with that?

I really don't know much about the laws, I just know what is WRONG...and deciding who "lives or dies" based on their IQ is wrong!

Anonymous said...

I don't want to leave my name due to reasons I do not feel it is appropriate to discuss at this time. However, I feel it IS important for me to let you know that there are OTHER transplant centers. Without making any accusations, please look into the transplant successes at that particular hospital and judge accordingly.

Manu Varma said...

The rest of Misty Cargill's story...

Disabled Woman Dies While Awaiting Second Chance At Kidney Transplant