For the last two days, the story of Amelia Rivera has kept showing up in my RSS reader. Amelia Rivera is a three-year-old girl who is developmentally disabled and suffers from Wolf-Hirschhorn syndrome. She needs a kidney transplant to live, and the hospital her parents went to declined to place her on the transplant list and also refused to let a family member donate a kidney to the girl.
The other posts on Patheos on this topic (You love your kid? Too bad! and Determining who is “good enough” to receive advanced medical care) have come out very strongly against the decision of the doctors. I don’t have enough data to have an opinion on this particular case, but since it touches on some broader bioethics problems I feel very strongly about, I’m going to wade in.
The facts are that we have a limited number of donor organs, and any effort to distribute them will be rationing. It falls to us to choose the best way to ration, but there’s no point in trying to reject the idea of choosing. A random lottery scheme for recipients or a first come-first served model is a choice. Right now, one of the ways we choose is prioritizing the patients who are most likely to thrive as the result of a transplant. So, at the very easy end of the spectrum, if your kidneys are failing, but so are your lungs, liver, and pancreas, you’re almost certainly not going on the transplant list.
The important thing to notice is that doctors aren’t making a decision that the person with multiple organ failure isn’t good enough to get to live or that s/he is less human than anybody else. It’s a purely pragmatic decision, like triage in a war zone, to focus resources on the people who will respond best. That can lead to some pretty awful outcomes for individuals. Someone who is homeless may not be considered a good candidate because doctors don’t think they’ll be able to keep up a regular schedule of taking antirejection meds. Someone who has struggled with alcoholism may be turned down for a liver transplant if they haven’t been sober long enough for doctors to believe it will make a difference.
What I haven’t been able to tell by reading the posts about Amelia and her family, is whether bloggers oppose the entire system of apportioning organs by efficacy or whether they don’t think the doctors’ concerns in Amelia’s case are warranted. One of the main concerns cited by doctors according to Amelia’s mother is that, because of her developmental disability, Amelia can’t be responsible for taking anti-rejection medications herself. Obviously, no child could, so the doctors’ concern is that Amelia may not have long-term caregivers who will help her take care of a transplanted organ.
I have NO IDEA how valid this concern is. I don’t know what data exists on long-term medication commitments for people who are medically incompetent. But I can say that, if the data suggests that a sufficiently high people in Amelia’s position aren’t able to sustain their transplant, the doctors are in the right.
I am suspicious that the relevant data may not exist, and I would recommend #TeamAmelia focus some of their efforts there. If the default has just been to not give transplants to developmentally disabled people, Amelia’s supporters should agitate for long term studies to see if the concern is borne out by the data. Otherwise, there is no way to overturn the consensus on risk. Even if historical data exists, it may be prudent to revisit it if the long-term care of the disabled has substantially changed.
There’s another systemic issue to be addressed. I’ve framed the metric for judging the efficacy of a transplant in terms of years of life added, but it’s likely the doctors in this case are considering Disability Adjusted Life Years (DALYs). This is the kind of measure where a year of life in a coma is ranked a less desirable than a year of life out of one, so, all things being equal, you’d give the organ to the person not in a coma. I think this a reasonable thing to take into consideration, up to a point, but we have a responsibility to look at how we calculate and compare DALYs. Again, the point is not to rank how human people are or how much we value them, but to make the best use of the limited resources we have.
If Amelia’s supporters want to start a broader discussion of DALYs and our transplant criteria, I’m all in favor of it, but I think it’s deeply unfair to condemn the doctors and inhuman or cruel when any system will leave some people to die who would passionately prefer to live. (Though, if you want to do something about the scarcity of organs, make sure you’re signed up as a donor and support opt-out donor registries). As long as there’s a scarcity, some people will die; that fact alone is not a rebuke to the allocation system.
Now, one final note about Amelia’s family’s willingness to donate a kidney of their own, and not take one out of the donor registry. Parents love their children and are willing to make a desperate attempt to save their lives even if the risks are large and the prospects are dim. That’s why doctors take the decision out of their hands. No doctor would transplant part of a liver from a mother to her severely alcoholic son, no matter how much she loved him. Again, this comes down to data that I have seen in none of the articles and blogposts on the subject. Links to scientific studies would be relevant here.