Why don’t more people become living organ donors?

A Sensible Medicine Guest Post

Ever since Dr. Satel wrote her Sensible Medicine article It’s Time To Rely on More Than Altruism; It’s Time to Reward Kidney Donors, I’ve been a bit obsessed with the question of how to increase kidney donation. Here, Dr. Margaret Peterson suggests some reasons why people do not donate kidneys.

Adam Cifu

In a recent Sensible Medicine essay, Dr. Sally Satel, herself the recipient of two donor kidneys from living donors, wrote that it should be easier to source donor kidneys, especially the high-quality ones that come from living donors. She cites a 2013 poll saying that 25-50% of Americans say they would give a kidney to a friend, relative, or stranger, and compares this to the number who actually do so, which in 2024 was 545. This is pretty small potatoes compared to the more than 90,000 Americans currently suffering from end-stage renal disease and on the waiting list for a donor kidney. Dr. Satel has written about overcoming people’s hesitancy through monetary compensation. But that leaves unanswered the question of why the number of people who become living donors is so low.

If we are to believe the polls, it is not just “thousands” who say they would consider becoming a living kidney donor, but millions. The current US population is about 340 million, so using the 25-50% data means that between 85 and 170 million Americans are supposedly willing donors. Why are people so reluctant to donate, even though so many say they would consider it? I can think of a few reasons.

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Dr. Satel names the first in her essay, the tyranny of the gift. This is, as Dr. Satel notes, “the morphing of overwhelming gratitude at receiving an organ from a relative or friend into a sense of constricting obligation.” Dr. Satel describes just such a situation: a friend, Erica, donated bone marrow to her fraternal twin, Linda, when Linda was suffering from Hodgkin’s lymphoma. Twenty years later, Erica developed polycystic kidney disease. Erica asked Linda to donate one of Linda’s kidneys to Erica. Linda agreed at first, and then changed her mind. “Erica implied that she was furious with Linda,” wrote Dr. Satel, reporting that she herself found Linda’s refusal “downright bizarre,” given the sisters’ history.

There’s the tyranny of the gift, in all its destructive power. Erica and Dr. Satel appear to have believed that Linda, having been the recipient of a bone marrow transplant from Erica, therefore owed Erica a kidney. Granted, it is the recipient of a transplant who is understood as forever obligated to the donor, and not the other way around. But it may well be that many people who choose not to become donors refuse at least in part because they sense that this may change their relationships forever, and not necessarily for the better. As Dr. Satel muses, she wonders whether Erica’s relationship with Linda has even survived.

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A second reason people may choose not to become living organ donors is because of the risk to their own health. The risks to the donor may, in fact, be minuscule, but there is an asymmetrical distribution of risk in transplant surgery. The risks associated with becoming a donor may look small to the person living with the reality of kidney failure and anticipating the risks of transplant surgery and a lifetime of immunosuppressive drugs. And the risks to the donor are smaller than those to the recipient. But the recipient is a seriously ill person who accepts the risks of transplantation in the hope of better health and a longer life. The donor is a person in excellent health who accepts the risks of donation, knowing it cannot possibly improve her health. The best she can hope for is that the procedure will not do permanent damage. That is, evidently, a chance that not a lot of people are willing to take.

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A third reason people may choose not to become living donors has to do with what we who have been formed in the long Hippocratic tradition of the West have come to expect from a physician, and the implications of this for what it means to be human. We expect that the physician who treats us will prioritize our well-being, and not the well-being of some other individual or group. Most of us think that is not what doctors are supposed to do. We don’t want the physician at our bedside trying to achieve the greatest good for the greatest number. We want the physician at our bedside, trying to do what is best for us in this moment, period.

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So what do we make of the discrepancy between the many millions of people who say they would consider becoming a living organ donor, and the few hundred a year who actually do so? Clearly, for some small number of people, the thought that someone else needs their kidney more than they do is persuasive. For the vast majority of people, it isn’t. They don’t want to enter into a tangled web of obligation, even as the one to whom the obligation is owed. They don’t want to risk their health—the one thing that belongs inalienably to them and only them—even for so worthy an end as possibly improving someone else’s health. And they don’t see themselves, and don’t wish to be treated by any individual physician or by the organ transplant system as a whole, as an assemblage of body parts to be distributed at will. They see themselves as people whose bodies are properly their own, even if they are well and others are sick.

Margaret Peterson, Ph.D., LMFT is a therapist practicing in Philadelphia.

Photo Credit: Volodymyr Hryshchenko