I've written a fair number of words addressing the portrayal of transplant issues in television and movies. It comes up fairly often, since the very idea of transplantation is either one of those awesomely fantastic medical miracles, or else a fascinating grotesquery, depending on your particular viewpoint. Either way, it makes for some engagingly dramatic story lines.
Of course, most of the time, the truth of the transplant process, with its boring paperwork and committee meetings and rigorous evaluations and financial approval process, is ignored in favor of less than accurate, but way more exciting, fictional stories.
I think most of us understand that liberties with the truth will be taken in the pursuit of entertainment. I think most of us don't make major life decisions based on the television we watched the previous evening. But I can't help but be upset when the liberties Hollywood takes with organ donation and transplantation feed into some of the widely held public misconceptions. Especially when public attitude toward organ donation makes such a huge difference. If people trust their doctors, and the system as a whole, then organ donation rates increase.
The stories that damage the public's faith in the organ donation and transplantation system that come out of Hollywood are annoying, but the real-life stories that cast doubt on the fairness of the system are much more damaging. The most recent story to surface is that of Misty Cargill, a young woman in Oklahoma being denied a place on the Oklahoma University's Medical Center's kidney transplant list because of mild mental retardation. Her story was featured in an NPR story last week. The NPR reporter gives some of Misty's background information, but the bottom line is simply that OU has decided that Mental Retardation = No Transplant.
It doesn't help that OU has refused to give an official statement about the case. The only statement from OU has been a remark, probably offhand, that the transplant team decided that Cargill "probably wasn't able to give informed consent." However, the state of Oklahoma denied her request to appoint the department of Adult Protective Service to be her legal guardian, in order to provide legal consent to medical decisions, judging Cagill to be competent to make her own decisions.
It's important to note that this decision is being made by only this particular transplant center. Every transplant center is able to decide who they wish to list for transplant, and who they do not wish to list. Often the decision to deny someone a place on the transplant list is a pragmatic one: a belief that the patient doesn't have a chance at surviving long, even with a transplant, because of (for example) a recurring medical condition, or because they are too sick to survive such a difficult surgery. A patient might also be denied a place on the list due to financial reasons, although many hospitals (such as Annika's) transplant a number of patients without insurance coverage as a compassionate service.
It's hard to wade into the murky waters of organ donation and transplantation. The ethical questions that arise at every turn are mind-boggling. I, myself, have agonized over the question of the fairness of offering Annika a third transplant, when others die waiting for their first. In the end, I accept that, as a parent, I can do nothing but hope for the life of my child, and agonizing over these issues is not for me to do. For the transplant community, the only question that really matters (beyond the financial issue) is whether or not the transplant team judges that the recipient has a relatively good chance of surviving the operation, and then surviving however long the team judges to be long enough to make a transplant a worthwhile use of a scarce resource.
It's not pretty, to state life-and-death decisions in such stark terms. How many extra days of life are enough to be worthwhile? And are those extra days worthwhile, if they are all spent in a hospital instead of, say, the magical make-believe world of Disneyland?
I think (or hope, at least) that the Oklahoma doctors are basing their decision on the belief that Misty Cargill might not be able to follow the complicated drug regimen and follow-up care required to ensure that a transplant is successful. It certainly sounds like they are wrong in this respect, but it beats the conclusion that they value Misty's life less than that of a non-disabled transplant candidate.
Misty could probably go to a different (perhaps more enlightened) center to be listed for transplant, and perhaps this would be the best course of action for her. I can't help but think that this experience would leave her less than trusting that the transplant doctors there have her best interest at heart. But it's also true that the extensive follow-up care required of a transplant patient means that living close to the transplant center is a significant benefit. For her sake, I hope that that OU's transplant team reconsider their decision.
If you'd like to add your voice to those expressing concern about the message that OU's decision is sending to the public regarding discrimination in the world of organ donation and transplantation, here's the page on OU's website to send emails.
As a parent who's been given, so far, 5 wondrous extra years with her child as a direct result of someone's decision to be an organ donor, I can't help but be grateful to the system, and the doctors and nurses and everyone else working within it. Here's hoping for improvement and enlightenment in the world, every day.