There is an ongoing and lively discussion in the policy literature and the popular media about the thousands of people on waiting lists for organ transplants. I want to draw attention to one feature of the debate that especially intrigues me: the way advocates for increasing the supply of kidneys have managed to portray the issue as a matter of life or death.
There are many proposals for obtaining more transplantable organs. Among them: making organ retrieval from eligible deceased donors the default option rather than an explicit choice by the donor or the donor’s family; providing modest financial incentives for organ donation; even allowing an outright market for organs. Meanwhile, the number of living donors is growing. More living donors are providing organs to people they don’t know, and people who need organs are even posting poignant information about themselves on special websites, hoping to be chosen by someone willing to be a living donor. Nearly all the organs provided by living donors are kidneys, since people have two kidneys and donating one is believed to be relatively safe. Obviously, living donation is not available for hearts; living donation of part of the lungs or liver is sometimes possible but is much more dangerous than kidney donation for the donor and less likely to be effective for the recipient. (For a careful discussion of proposals for increasing supply, one good source is the recent Institute of Medicine report Organ Donation: Opportunities for Action. I should mention, by way of disclosure, that I was a member of the committee that produced the report.)
The refrain in many discussions of organ supply is "people are dying on transplant waiting lists – give the gift of life." The discussion can become intense; when bioethicists have raised concerns about living donation and the commercialization of organs, critics have sometimes accused them of being willing to sacrifice lives because of some arbitrary ethical repugnance. But is an organ transplant life-saving? In the case of hearts, livers, and lungs, "yes" is a reasonable answer. People on the waiting list are very close to death from organ failure, with no effective functional substitutes that can maintain life while they wait. People waiting for kidneys are in a different position, however, since they can be managed for an indefinite period on kidney dialysis. The great majority of the people on organ waiting lists are waiting for kidneys, precisely because this option exists.
People who get kidney transplants do have a longer life expectancy than people who stay on dialysis, but the really dramatic benefit is improved quality of life. I recently talked with a woman on her second living donor kidney (as often happens, the first had failed after a number of years). She still has a serious health condition and must take powerful immunosuppressive drugs to forestall rejection, but she was eloquent about how much better she feels with a transplant compared to being on dialysis. She may also live longer. Nevertheless, in my opinion, calling a transplanted kidney "life-saving" is a stretch.
Why does this matter? It matters because if a kidney transplant is life-saving, advocates for living donation can appeal to the so-called "rule of rescue." This is the impulse people have to save an identified life – the trapped miner, the toddler who has fallen into the well – whatever the cost or risk to the rescuer. Making the same effort to improve mine safety or to cover wells is somehow less appealing, even if it can be shown to translate into a near certainty of saving one unidentified miner or toddler (saving a "statistical life").
The impulse is very powerful. It can motivate someone to give a body part to a stranger, an act that involves a major operation with a painful recovery of at least several weeks and the risk of short- or long-term complications, and it can help convince society to ignore concerns about whether routinely using living people as organ sources is a good thing. Would people be as willing to donate their kidneys to strangers if they realized that transplantation is about improving the quality of a life, not saving it? Do those advocating for living donation realize how many other ways there are to improve quality of life and increase life expectancy that do not require a step as extreme as surgically removing a living person's kidney?
The sad fact is that many Americans with chronic diseases or severe disabilities could have somewhat better life expectancy and dramatically better quality of life if we paid half as much attention to their needs as we do to those of people with failed kidneys. For patients with diseases like diabetes or chronic obstructive pulmonary disease, the difference in quality of life between state of the art management and what they actually get can be as great as it is between dialysis and a transplant. Unfortunately, our health care "system" has no systematic, fair way to set priorities. Some kinds of human suffering receive a lot more attention than others, and the result is a disturbing pattern of inequities.
I've always thought that it was unfair to let the rule of rescue have so much influence on decisions about who should be helped. It seems even less fair if the rhetoric of life-saving is only rhetoric, and the matter isn't one of life and death at all.