Today six and a half of us took five hours to buy two Christmas trees.
The piece here was in the New York Times today, posted online four days ago. It’s relevant not just because I went through the transplant selection process some 6 months ago, but because we had a conversation about this very topic at yesterday’s party, with one of the cousins who’s a general and endocrine surgeon in Denver, and so familiar with hospital and transplant procedures.
NYT, Daniela J. Lamas, 24 Nov 2021: Who Deserves a Lifesaving Organ?
The essay discusses specific cases and how criteria for transplants can result in “yes” or “no” for each patient. And how transplant programs themselves are evaluated by success rates. And how the subjective decisions doctors make can result in decisions that are arguable.
“In our minds, the norm or ‘ideal’ transplant patient is the well-supported, well-spoken, self-advocating, ‘adherent’ patient,” said Dr. Martha Pavlakis, the medical director of kidney and pancreas transplantation at Beth Israel Deaconess Medical Center in Boston. “How often do we admit it’s the ‘high-socioeconomic-status white patient’ that is seen as the norm that nonwhite patients are judged against?”
What makes someone a “good” transplant candidate? Maybe it is inevitable that doctors’ biases creep in when we must make fraught decisions about a scarce resource. The medical community has dealt with many similar issues before, and not always well. Back in the 1960s, when dialysis machines were limited in number, a Seattle committee of physicians, nurses and community members was charged with developing an allocation system. This so-called God Committee decided that social worth — an assessment of a person’s contribution to society — would help determine who would receive the lifesaving treatment. When I was in medical school, this history was shared as a cautionary tale. And yet now, years later, I find myself wondering how far we’ve really come.
In my case, I understand there was such an evaluation made that covered many of the criteria just listed. And here I am a “high-socioeconomic-status white patient.” Should I feel guilty about this? (There are some who would say yes.)
But I think the criteria that made me a high-ranked candidate for a heart transplant — put high on the “list” and so was matched with a donor in under two weeks — was that, particularly, I am well-supported. I have a working partner, who was willing to come to the hospital every single day I was there, and between the two of us we are fairly well off. We have children and cousins in a support network across the Bay Area. Also, I think I was well-spoken, even under the drugs in the hospital; and I probably described how my retirement activities consisting of supporting a couple three websites and perhaps (did I really this? not sure) was working on writing a book.
So apparently they concluded I was a worthy candidate, and indeed I’ve recovered well and continue to support my websites and continue to work erratically on my book, for whatever benefits to society those activities might constitute.
Still, some of the subjective criteria discussed in the essay are troubling. One is the case of a black man who had an elongated finger nail on his pinkie finger. A sign of cocaine use? The “God committee” suspected it was, and declined to list him for a transplant. Other patients seemed not to follow directions, because they didn’t speak English and simply didn’t understand! And another interesting criterion is that patients with a history of missing appointments were downgraded. Makes sense. I’ve never had a problem with that, and in fact in the months following my surgeries, the staff at the hospital and clinic have been impressed by how well we (well, my partner, who supervises all this at home) keep track of my medications and appointments.
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Our chat with the surgeon cousin from Denver provided a few new insights about my personal experience. He told about the weekly meetings (of the “God committee” as referred to in the article, where current candidates would be discussed and evaluated along the various criteria. He talked about how some of the drugs they give you cause paranoid fantasies, and retroactive amnesia. I mentioned that yes, I had a number of weird hallucinations, some rather paranoid, and he said, don’t worry about it, they’ve heard it all. And the retroactive amnesia explains why events of the first couple weeks, which others say I was wide awake for, nevertheless didn’t stuck in my long-term memory.
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On a related topic, I heard a piece on NPR, a couple days ago I think, about the limits of cold storage, and how that among other things limits the rates of successful transplants, since the organs themselves only survive a few hours between patients, using current storage technology. Was it this one? Not sure; no transcript yet.)
It’s now been six months and two days since my transplants, and I’m doing well, and hope to continue to justify the decision those doctors made to provide me life-saving treatments.
(first draft)
