Tuesday, August 7, 2012

Where do we draw the line on who gets--or deserves--an organ transplant?

You'd think that being young and otherwise reasonably healthy might be a good criterion for getting you on a list for an organ transplant if you need one. Or that having a donor, say for a kidney, at hand and at the ready in your own family might make it OK for you to receive a transplant. What you don't want to think--really, consider this--is that you'd be denied a transplant because of your mental condition or level of intellectual ability. If ever there was a slippery slope in medicine, this one is a black diamond coated in ice.

In January, a three-year-old girl made the news--and her story went viral--when the medical powers that be denied her the opportunity to receive a kidney transplant from her own mother. The girl, Amelia Rivera, became the subject of various petitions and amidst a general outcry, the hospital that denied her transplant, Children's Hospital of Philadelphia, officially approved Amelia to receive the transplant, again from her own mother. Amelia has Wolf-Hirschhorn Syndrome, a rare genetic disorder, and will die unless she undergoes a kidney transplant. Her mother detailed her early experiences with the medical staff during this decision process here. The medical professionals tried to draw a line between being intellectually able enough to warrant a kidney and a life and being so intellectually disabled that life is not worth saving or prolonging.

Amelia's case was so clearly one of misguided decision-making--have I mentioned that she had a donor at hand, her own mother?--that any other outcome than a "yes" to her transplant would have been indefensible. But today, we've got another case. This one involves a 23-year-old man who needs a heart transplant. Obviously, he has no donor at hand, as people cannot donate hearts and live. And, it would seem, medical decision-making can involve more than deprivation of a beating heart and a life. It also can involve a different kind of heartlessness, a cold calculation that might have made Darth Vader flinch before his own postmortem rehabilitation.

Again, the trigger here is a rare disorder, in this case a reduced capacity for ejection of the blood from the left ventricle of the heart, the muscular chamber responsible for shooting that blood out of the heart and into your circulatory system. It puts the "pump" in the "pumps blood" part of the heart's primary duty. You can imagine some of the possible outcomes if this pump fails. Right now, Paul Corby's 23-year-old pump is operating at about 20%, not unlike the heart of his father, who died at age 27 before his rare heart condition was discovered. That means that Paul Corby is at least at greater risk of stroke and certainly under threat of heart failure and an early death. Indeed, according to Joslyn Gray, who broke this story at Babble, Corby's already had a handful of mini strokes. Did I mention he's 23?

He also is autistic.

According to the doctor who determined that Paul Corby shouldn't be placed on the transplant recipient list for a life-saving heart transplant,
I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior.
In other words, his autism precludes his being a suitable transplant recipient. His mental condition precludes it. His history of angry outbursts--presumably the reason for concern about "unpredictable effects of steroids"--precludes it. And for some reason, the fact that a heart transplant is complex and requires multiple procedures, something that presumably applies to anyone receiving one, is also relevant in his case.

For some context, let me introduce you to someone who received a heart transplant just last March. He is 71, a smoker for 20 years who has survived five heart attacks and was in end-stage heart failure at the time of his transplant. Evidently, his mental state was not a contraindication for his having a transplant, so after 20 months on the list, he received one. His name is Dick Cheney.

Is it appropriate to prohibit someone from placement on a transplant recipient list because of a developmental disorder like autism or because of issues of mental health? In essence, this exclusion of Paul Corby, a never drinker and never smoker and author of a self-published book, from the transplant recipient list, is a message that if you are an Other, if your mind does not meet some critical cutoff for mental health, if your behavioral history does not come up to snuff, if you have a developmental disorder, if you are autistic, you are not worthy of having your life saved, or even of a chance to get on the list of those hoping for it.

Who else would find themselves excluded under these criteria? Anger concerns? Will people with narcissistic personality disorder who rage find themselves excluded? Unpredictability? Look out if you've got a history of bipolar disorder. Developmental disorder is a contraindication? If you or your child has a diagnosis of ADHD or autism, then guess what? You're Not Worthy.

The Babble piece quotes a professor of bioethics, Jeffrey Kahn, as saying,
You want to make the best use of a very precious organ. You want to make a successful use, not waste it. And ‘waste it’ doesn’t mean that the person doesn’t deserve it, it’s that we don’t think it will be successful. If there is a real medical concern, that is legitimate.
What seems absent here is a medical rationale for excluding Paul Corby from the transplant recipient list. Obviously, if there were a genuine medical contraindication, then a transplant would be precluded. But based on what the hospital wrote, nothing in the list of reasons specifies a medical contraindication. It's all behavioral. It's all about mental health. What is the legitimate, evidence-based reason for mentioning autism or even mental health at all?

The Babble piece quotes Kahn as adding,
I think that the key distinction,” Dr. Kahn said, “is that we as a society are not willing to say, ‘that person’s life is worth more than another’s,’ based on their contribution, the quality of their life, their intellectual capacity. If that’s what’s happening in this case, that seems to be an outlier. It’s not the way that we have decided to allocate this scarce resource.
Making god-like determinations about what constitutes a worthy life, based on intellectual capacity or mental state? Not something that we, with our limited human vision, should be doing. Imagine whom we would have lost in the arts, sciences, literature, and most important, our simple day to day lives and loves if those were our criteria for determining who is worthy.

I hope that the medical professionals involved here, including those at Penn Medicine responsible for this denial of Paul Corby from the transplant list, reconsider what they've done. With this decision and their stated rationale for it, they send the message that the Powers That Be can decide, with impunity, that you are Not Enough, not for medical reasons but for who you are, how you behave.

And make no mistake, not a single one of us is Enough in some way or another. Not one of us meets every standard of normality or OKness in our being and behavior. Would it be all right with you if you--or even worse, your child, God, so so very much worse--were denied a chance at living because someone determined that their differences, their variance from some norm, made you--or them--unworthy? Have we not, in this world, seen enough of this kind of deadly decision-making based on assumptions and presumptions about what constitutes a worthy human life?
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Corby's mother, Karen, has started a petition at Change.org to lobby on behalf of her son. A similar petition may have had an effect in the Amelia Rivera case.

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