The first two installments of this story described the emotional appeals central to the transplant industry’s national campaign to recruit live kidney donors and an example of how successful it can be in convincing people — contrary to the evidence — that living donation is nearly risk-free and beneficial to donors. This installment discusses how a remarkable evolution of ethics turned the once unthinkable into an act which is now publicly encouraged and glorified.
PUBLISHED MAY 6, 2015 AT 11:27 AM
What Conceivable Benefit?
There was a time, not so long ago, when if Dody Koontz had walked into a hospital and offered to give away one of his kidneys, he would have been greeted with a straitjacket instead of open arms. A journal article in 2003 was titled: The Living Anonymous Kidney Donor: Lunatic or Saint? Dr. Arthur Matas of the University of Minnesota wrote in 2004 that “historically, the medical community has been suspicious of individuals offering to be non-directed donors… assuming that such individuals are likely to be mentally unstable.” An ethicist in England wrote in 2007 that “the act of donating a kidney to an unrelated person is viewed by most physicians as impulsive, suspect and repugnant.”
But the evolution from suspicious dismay to enthusiastic public encouragement for “altruistic” donation didn’t take long.
Early on, it took ethicists and doctors a while to warm up to the notion of performing major surgery on a perfectly healthy human being to remove a vital organ for someone else’s exclusive benefit. Even some in the industry admit that the allure of live donation for transplant physicians leads to questionable ethics. “All of us in this field recognize the conflicts of interest that we face. We gain financially, we satisfy our own desires to help recipients, and center prestige grows when more transplants are performed,” wrote transplant doctor Robert Steiner in 2004.
The first successful living donor transplants in the 1950’s were between identical twins, and with their initial success, the prospect took on a more beneficent aura; it’s the sort of thing you could understand twins doing. Having gotten the public used to the general idea, the medical community then began to transplant from living donors who were otherwise genetically related, which was not that big an ethical leap since it was still all in the family. And that’s pretty much where it stayed through the 1990’s, with mostly siblings and aunts, uncles, cousins, etc. in the donor pool.
The next group encouraged to test the waters were husbands and wives. “Excellent results have been achieved with these volunteers and cogent arguments have been made that this practice is ethically acceptable,” wrote Dr. Aaron Spital in 2000. “These considerations have encouraged many transplant centers to break with tradition and accept spousal donors.”
These cogent arguments in favor of genetically unrelated donation were summarized by Dr. Thomas Starzl, known as the father of modern transplantation. “What conceivable benefit was there for the healthy and well-motivated live donor?” he asks in a history of transplantation. “A defensible way out was found at ethics conferences and in law courts with the argument that the fullness of the donor’s emotional life and holistic welfare was very often dependent on that of the recipient.” In other words, a wife might be ethically justified in donating to her husband if she considered his continued existence to be beneficial to her emotional well-being. It is justified if donor’s emotional health is dependent on the physical health of the recipient.
“Acceptance of this concept was a great relief to renal transplant surgeons whose early contributions to the new field had been so heavily dependent on live donors,” noted Starzl.
The larger purpose of Spital’s paper was to advance the ethical boundaries toward the next logical step: expanding the donor pool by including friends and casual acquaintances. So he sent transplant centers a survey asking what they thought of the idea. Not surprisingly, they were all for it. In fact, many were already doing it, and before long, the novelty had worn off altogether.
Looking ahead, Dr. Anthony Monaco of Harvard wrote that “An even more difficult ethical dilemma arises if the donor happens to be a stranger,” in which case “the donor has a less favorable risk/benefit profile.” Less favorable meaning that the risk of surgery is tangible and real, but the benefit in donating to a stranger is abstract and conceptual. In return for going under the knife and having an organ cut out, you get the warm glow of altruism. At the time, the medical community could not see any justification for it. There was no percentage in it. These people must be crazy.
“Thus far,” said Monaco in the year 2000, “the use of altruistic strangers has been considered to be an impenetrable taboo.”
But taboos are meant to be broken, and the big breaks for advocates of live kidney donation came in two forms; the development of new anti-rejection medications and the less invasive surgical technique of laparoscopic kidney extraction. The new immunosuppressants could quell the recipient’s reaction to someone else’s DNA, and the laparoscopic procedure eliminated what its pioneer practitioner called the “formidable wound” and “poor cosmetic results” that came with old- fashioned surgery techniques.
Suddenly, a lot more people with mortally diseased kidneys could be treated through transplantation — which meant that more donors were needed to fill the gap. The oxymoronic term “minimally invasive surgery” meant a much more attractive pitch to the would-be givers of the gift of life. The cadaverous supply being limited, those among the living who were inclined toward extraordinary generosity found themselves to be more and more in demand.
Still, “the majority of centers would not consider an altruistic stranger,” Spital reported of one of his surveys. But “a sizable minority would… attitudes toward unrelated living kidney donors have gradually become much more liberal.” Which was something of an understatement. The “impenetrable taboo” dissolved rather quickly. Within the next few years, enhanced self-esteem officially became heavily promoted as a benefit of living kidney donation, one which justified the risk of physical injury and death.
A typical feature in a suburban feel-good piece quotes the local transplant surgeon as saying “studies suggest that living organ donation may actually increase a donor’s life expectancy due to the psychological reward.”
“There are many benefits to becoming a living donor,” proclaims a Johns Hopkins website. “One of the most obvious benefits is that you can save a life, or drastically improve the quality of life for the recipient.” They never get around to listing what the many other benefits are — because there aren’t any. Even so, giving away half of your kidneys — which used be thought of as the act of a lunatic — now merits an invitation to throw out the first pitch.
A harbinger of the fall of the next big taboo came in the form of a note of caution from Monaco, who wrote that “the establishment of using strangers as donors would set transplant medicine on a slippery slope toward commercialism of vital organs.”
Next: The Slippery Slope