Edited to add: in the time since I wrote this draft post, Kathleen Sebelius stated that she would not grant an exception for Sarah Murnaghan. While I take some issue with Sebelius stating that she prefers a process set by “medical science and by medical experts”, given her ruling regarding Plan B, in this case she is correct. Especially since the Pennsylvania representatives were specifically asking for “an experimental variance.” We have human subjects research protections for a reason.
When people find out that my mother died of non-small cell lung cancer, almost invariably, the first thing they ask is, “did she smoke?”1 It’s a truism that holds today, and it started shortly after she was diagnosed – even from people who should have known better. In other words, every bioethicist, save one, flat-out asked me that. The horror as they realized what they implied right after they said it always amused me, because we as a whole tend to agree with the idea that people shouldn’t be punished with death for mistakes, but there’s still that struggle to identify and name what a person is being “punished” for.
This came to mind today when I read the on-going coverage of a Philadelphia-area family who is protesting the lung transplant guidelines for children because the guidelines are preventing their daughter from receiving a transplant as quickly as she might otherwise. Since an exception isn’t being made for them2, they’re basically pitching a media fit in an effort to get the rules changed – or at least changed for them.3
Solid organ transplants, though, are a matter of scarcity of resources. Approximately 117,000 people in the United States are waiting for an organ at any given time; only about 30,000 solid organ transplantations are done in that same year, and over 6,000 people waiting for transplant will die. You can do the math there. And this notion that organs are a scarce resource does come in to play in how people are selected for transplant: only the sickest adults receive other adult organs. The sticking point for the Philadelphia-area family is that adults who are less sick than their daughter are able to receive donated lungs before she is, because at her age (10), the child needs a donation from another child, significantly lowering the pool of available donors. The OPTN press release goes into very clearly explained details about how this works, and also reiterates the fact that organs are a scarce resource.
So imagine my surprise to get to the end of the philly.com article to see Art Caplan saying that children should be prioritized over adults
because many adult transplant patients need new lungs because of their own actions, like smoking, while children are “non-culpable.”
Erhm. Hmm. Well, it’s a paraphrase of a quote from NBC News. Obviously I should…
Adult lung transplant recipients are frequently people who need transplants because of what Caplan called “bad behavior,” including smoking.
Children should get priority partly because they’re “non-culpable,” Caplan says, but also because he believes that most donors would want their organs to go to kids.
Uhm. So, stop me if you’ve heard this one before. Once upon a time, there was this group in Seattle who was set up to decide who should or should not be allowed access to an experimental, life-extending dialysis treatment. They judged men more worthy of receiving this treatment than women. They judged people based on their income and worth, and their religious beliefs. They judged people based on perceived character – and on skin color. As is frequently quoted from the article on the Seattle God Squad,
On the basis of the past year’s record, a candidate who plans to come before this committee would seem well-advised to father [emphasis mine] a great many children, then throw away all his money, and finally fall ill in a season where there will be a minimum of competition from other men dying of the same disease.
This first patchwork attempt at allocating scarce resources led to a lot of things, including modern hospital ethics committees and the criteria for how need is determined in transplant patients – and once a person is on the list,4 who receives an organ is primarily determined by illness, type matching, and distance between the donated organ and the people in need. There are currently 40 adults just within Pennsylvania who are seriously ill and in need of lung transplants; in Philadelphia alone there are three children under 12 who also need transplants – and I doubt anyone is comfortable saying that Murnaghan is more deserving or special because her family has managed to effectively mobilize the media.
Organ allocation sucks. The solution is to not look for exceptions, is not to moralize or justify illness as “punishment” for “bad behaviour”, or to create criteria beyond that which is scientifically and medically sound. The solution is simple: make sure there are enough organ donations for everyone.5