A national crisis of organ donor abuse

An extensive federal investigation has culminated in the U.S. Department of Health and Human Services (HHS) decision to decertify the Kentucky-based organ procurement organization Network for Hope. It is an overdue reckoning for alleged safety violations that were known and ignored under the Biden administration. HHS says that, despite repeated warnings, the organization continued to play fast and loose with patients mistakenly declared dead when the procurement was initiated. Out of 351 cases surveyed where the procurement was authorized though not completed, nearly a third showed “concerning features,” including neurological signs of life.

Accompanying Secretary Robert F. Kennedy, Jr. at his press conference was the family of Kentucky resident T. J. Hoover, whose 2021 case sparked the opening of the investigation last summer. Hoover’s sister, Donna Rohrer, recounted the harrowing story of how he woke up in the middle of his “honor walk” and began thrashing in terror. Surgeons balked, but according to whistleblower Nikki Martin, at least one of her supervisors wanted to proceed. (Martin was subsequently fired for speaking out.)

Network for Hope serves parts of several states, but these abuses are in fact a national crisis, as exposed in reports like Brian Rosenthal’s investigation for the New York Times. There is a longstanding pattern of procurement organizations aggressively pushing to ignore signs of life and err on the side of assuming death. In the case of one disabled Alabama woman, surgeons were in the act of cutting through her chest when her heart restarted and she began gasping for air.

Men and women like this are the inevitable casualties of a system that, in the face of shortage, has increasingly tilted towards Donation after Cardiac Death (DCD). Delicate organs like the heart can be especially hard to obtain if doctors wait for a declaration of brain death. But DCD bends the dead donor rule arguably to the breaking point, since resuscitation is deliberately withheld regardless of whether it is possible. The development of the so-called “Pittsburgh protocol” sparked intense ethical debate in the mid-2000s, with the Journal of Intensive Care Medicine arguing that it created an environment in which patients were managed “as potential donors rather than as dying patients.”

The passing years have borne this prophecy out. Even now, Network for Hope CEO Barry Massa insists his organization violated no protocols. Secretary Kennedy has announced his reforms with the intention of restoring faith in the process. But the scope of the abuses unavoidably prompts the question of whether that faith is worth even trying to restore, or whether DCD should be banned altogether.

The question asks itself with particular urgency in a context where vulnerable demographics are endangered by the creeping spread of so-called assisted dying legislation. From the circumstances that led to T.J. Hoover’s near-death (a drug overdose followed by a heart attack), it is clear that at the time he did not value his own life.

In theory, Medical Assistance In Dying (MAID) is sold as the ultimate deferral to autonomous choice. In practice, we have seen time and again how choice devours itself. This can take the form of outright murder, as in the horrifying case of an elderly Canadian woman euthanized against her will in Vancouver. But it can also take the form of more subtle social pressures as assisted suicide is increasingly normalized.

The organ shortage creates an obvious perverse incentive to lean on men and women wondering if they are literally worth more dead than alive. The very language of an “honor walk” conveys a sense of dignity and purpose—dignity and purpose broken people may seek in death, failing to find it in life.

However, as with DCD, the delicacy of the procurement process limits the viability of post-euthanasia donation. Enter the introduction of so-called “heart-beating” euthanasia into the bioethics literature, most recently defended in this shocking New England Journal of Medicine article.

In the Wall Street Journal, disability rights advocate Mary Marslender raised the alarm about this article, prompting an anxious response from two medical professionals concerned that the public not “conflate theory and practice.” They reminded readers that the infrastructure of organ donation relies on the “fragile resource” of “public trust.” And as we all know, “Trust is hard to gain but easy to lose.”

And in this situation, trust is a matter of life and death.