Kidney to Share: The Ethics of Living Organ Donation
by Martha Gershun and John D. Lantos, MD
Most living kidney donors have a relationship with the person to whom they are donating. They are family or friends, work colleagues, or members of the same religious community. Some, however, are strangers. They volunteer to donate without knowing who will get their kidney. Such donations represent a very pure form of altruism.
When the first such “stranger donors” volunteered to give their kidney to anyone, doctors were suspicious of their motives and their mental health. The doctors referred these altruists to psychiatrists, assuming that they must be crazy. Most, it turned out, were not. The psychiatrists found them to be in good mental health, to be rational, and to be motivated solely by a desire to help another human being.
Over the last few decades, the number of “stranger donors” has steadily increased. But even as transplant centers are increasingly counting on altruistic donors to help their kidney patients, they continue to keep in place policies and procedures that make it very difficult to donate.
Our book, Kidney to Share, recounts the journey of one such “stranger donor.” Martha donated a kidney to a woman she read about in the newspaper. The book takes readers through the arduous vetting process designed to assure doctors, and Martha, that she was physically and psychologically fit to undergo major surgery and continue a healthy life with only one kidney.
The book has some surprising plot twists. Martha thought that once she decided to donate the transplant center would do everything possible to facilitate her donation as quickly and efficiently as possible. Instead, she encountered a series of barriers that made her altruistic act of donating a kidney much harder than it needed to be.
After Martha disclosed that she occasionally smoked recreational pot (on vacation, in Colorado, where it was legal, she was quick to point out), the transplant center required her to schedule an in-person appointment with one of their substance abuse counselors. But when they couldn’t find an available appointment during her three-day trip to the transplant center for her medical and psychological evaluation, they told Martha she would either have to make an additional 400-mile trip back for that single appointment or delay her donor evaluation and possibly her recipient’s transplant, by several months.
Sometimes, the transplant center was inefficient to the point of callousness. For example, Martha and her recipient agreed to participate in a six-person chain donation because both were eager for the opportunity to save more lives. Martha rearranged her life to make the donation chain work. But when the chain fell through because another member had to pull out, the transplant center failed to notify her.
Her original scheduled surgery was canceled just hours before the operation because her recipient became too ill to proceed. When her recipient began to improve, the transplant center rescheduled the surgery without remembering Martha lived six hours away. They seemed to expect her to drive through the night to get to the center in time for the operation.
In one hilarious episode, they even required her to figure out how to acquire dry ice to ship a blood sample to the transplant center for tests that could have been done in any local medical lab.
Combined, Martha and her husband spent 380 hours on the kidney donation project – nearly 10 full work weeks. She was retired, but her husband still worked full time. In addition to spending weekends and holidays traveling to the transplant center, he had to use much of his annual allotment of paid time off. Their out-of-pocket costs, which her recipient reimbursed, were over $4,000.
Despite these obstacles Martha stubbornly persisted, ultimately donating a kidney that saved the life of her recipient. It was one of the most meaningful experiences of her life. But why did it have to be so hard?
Dr. John D. Lantos, a physician and bioethicist, places Gershun’s story in the larger context of the history of kidney transplantation and the ethical controversies that surround living donors. He outlines the discoveries that made transplantation relatively safe and effective as well as the legal, ethical, and economic policies that make it feasible.
John offers important recommendations to ease the barriers facing living organ donors. He notes how transplant centers, while focused on the quality of their donors’ medical care, fail to focus on the quality of their scheduling, travel, or logistic experiences.
Together we argue that we need to see – and treat – kidney donors as philanthropists. They make valuable contributions to transplant centers, contributions that save patients’ lives. If we would find ways to reduce barriers to living donation and smooth the way for these acts of life-saving generosity, we could save the lives of many people who die on the waiting list for a kidney transplant. We could also give more friends, family, and altruistic strangers like Martha the blessing of saving a life.
Martha Gershun and John D. Lantos, MD are co-authors of Kidney to Share (Cornell University Press, 2021).
Martha Gershun is a nonprofit consultant, writer, community volunteer, and living kidney donor. She retired as Executive Director of Jackson County CASA (Court Appointed Special Advocates). She is author of Care & Custody, and her work has appeared in The Kansas City Star, The New York Times Magazine, Kveller, and The Radcliffe Quarterly.
John D. Lantos, MD, is Director of the Bioethics Center at Children’s Mercy Hospital and Professor of Pediatrics at the University of Missouri Kansas City School of Medicine. He is author of Do We Still Need Doctors?, coauthor of Neonatal Bioethics, and editor of Controversial Bodies. He is also Associate Editor of American Journal of Bioethics and Senior Editor of Current Problems in Pediatrics and Adolescent Health Care. Follow him on Twitter @johnlantos.