Two-year old A.J. Burgess is very very sick. He was born without kidneys, which until recently would have been a death sentence. His doctors have performed miraculous work to keep him alive, but A.J.’s health is fragile and could take a turn for the worse at any moment.
A.J. has now survived long enough that he can receive a kidney transplant, something that would allow him a healthy and normal childhood unmarked by the trials of constant dialysis. His father Anthony Dickerson is an excellent match and eager to donate, but the hospital has said no. The reason why reveals a troubling strain of paternalism in how our transplant field treats living organ donors.
Anthony’s donation was scheduled for Oct. 3, but on Sep. 28 he was jailed for a parole violation. The authorities released him in time for surgery, but that’s when the transplant center balked, requiring that Dickerson “demonstrate good behavior” for three months before he would be reconsidered as a donor candidate.
Media coverage soon blanketed the case, with CBS, Fox News, the Washington Post, and USA Today all reporting it. Congressmen John Lewis and Hank Johnson led a prayer vigil on A.J.’s behalf. The primary reaction was bafflement. Anthony’s behavior may be irresponsible, but why would we want to prevent him from saving his child’s life?
The hospital’s public response has done little to quell the confusion. They indicated a need to maintain patient confidentiality even though the family told reporters they’d waive it. The rest of the hospital’s statement read:
Emory Healthcare is committed to the highest quality of care for its patients. Guidelines for organ transplantation are designed to maximize the chance of success for organ recipients and minimize risk for living donors. Transplant decisions regarding donors are made based on many medical, social, and psychological factors.
Emory is not an unsophisticated or poorly performing center: it’s one of the ten largest in the country. One of their surgeons, Dr. Ken Newell, recently served as president of the American Society of Transplantation. He is known as an advocate for kidney donor rights, authoring this article advocating providing donors lifetime health insurance and expressing a need for better follow-up. So clearly they must have a thoughtful reason for denying Anthony Dickerson the right to donate to his son. What is it?
I haven’t spoken to anyone at the hospital, but I suspect they’d make an argument like the following: the first rule of medicine is to do no harm. Kidney donation is a major surgery offering no direct medical benefit to the donor, so it is of the utmost importance to ensure that donors be psychiatrically fit and fully willing to donate. That’s why the entire team of a transplant center meets to approve each donor and make sure no one gives up their kidney who will regret it later.
Dickerson’s commission of a crime just days before surgery may well have been a conscious or unconscious attempt to sabotage the surgery itself. (Or perhaps it shows a personal recklessness that implies an inability to make such a momentous life choice). Either way, the hospital wants to err on the side of not pressuring someone to donate an organ if they don’t want to. Saving a life doesn’t justify coercion. Forcing someone to donate at gunpoint would be wrong, and allowing a transplant to go forward when the person might not want to donate could be seen as a weaker form of the same pressure.
Whether good or bad, this idea of saving a donor from themselves is paternalistic. It overrides the donor’s stated preference because of concerns that the preference is not true or well-informed. And it’s far from isolated: one donor reported a center requiring that her husband approve the surgery before they’d operate. More generally, when a center judges a donor medically or psychologically unfit to donate, that decision is final—the donor cannot ask to go ahead with the surgery over the doctor’s recommendation.
But allowing a doctor to substitute their judgment for the donor’s is problematic, as the Dickerson/Burgess case makes clear. Transplant professionals are not representative of the patients they serve. First, doctors are rarely donors themselves and rarely have family members with kidney failure, which is often caused by diseases associated with poverty like diabetes and hypertension. Second, the racial demographics of patients and doctors are dissimilar. African Americans are three times as likely as whites to go on the transplant waiting list, whereas the medical profession is disproportionately caucasian.
The problem here is not malice but a simple incompatibility in reasoning. Doctors think they can make decisions for their donors, but they lack common experiences and assume they understand donor preferences more than they do. For example, one study found that the average donor candidate would accept a lifetime risk of kidney failure post-donation of 20% (the lifetime risk for most donors is closer to 1-2%, and few centers would allow someone to donate whose projected risks were higher than 5%).
But paternalism towards donors reveals a deeper and more consequential problem: that transplant profession treats donation as an abnormal decision. Not donating is considered the default, and this has harmful consequences. Only one in seven patients find a living donor even though two thirds of people polled say they would donate an organ to a family member.
This is a major problem: Each year the gap between patients going on the waiting list and receiving a transplant is greater than all the homicides in the United States. If only on in ten thousand Americans donated each year, there wouldn’t be a shortage.
Now, paternalism could be justified if the choice to donate were often a mistake. But studies repeatedly find that more than 95% of donors would choose to donate again. Moreover, donors are wealthier and more likely to be college educated than the population on the waiting list, implying that greater medical sophistication and patient autonomy lead to donation. Finally, educating patients about living organ donation significantlyincreases their chance of donating. The more candidates know, the more they think donation is a good idea.
The policies the transplant field needs–reimbursing lost wages for organ donors, providing donors lifetime health insurance, better transplant education for transplant families, and public awareness about living organ donation–will all be more difficult to achieve if we continue to treat living organ donation as something to discourage. Anthony Dickerson should be allowed to save his son’s life, and the transplant system needs to take donor autonomy seriously and not substitute its judgment for a donor’s. But more broadly we as a society need to treat living donation as a type of public service worthy of promotion.