People are opting out of organ donation programs after learning about a man who was mistakenly declared dead

WASHINGTON (AP) — Transplant experts are seeing an increase in the number of people revoking organ donor registrations, their confidence shaken by reports that organs were nearly recovered from a Kentucky man mistakenly pronounced dead.

It happened in 2021, and while the details are murky, surgery was avoided and the man is still alive. But donor registries in the US and even across the Atlantic are affected after the case was recently published. A drop in donations could cost the lives of people waiting for a transplant.

“Organ donation relies on public trust,” said Dorrie Dils, president of the Association of Organ Procurement Organizations, or OPO. When eroded, “it takes years to recover.”

Only doctors caring for patients can determine whether they are dead — the law bars anyone involved in organ donation or transplantation. The allegations raise questions about how doctors make that determination and what should happen if someone sees reason for doubt.

The key is to make sure “all doctors are doing the right tests and doing them well,” said Dr. Daniel Sulmasy, bioethicist at Georgetown University.

A suspected near miss in Kentucky

The 2021 case first came to light in a congressional hearing last month, with details unconfirmed in subsequent media reports — allegations that a man who had been pronounced dead days earlier woke up en route to the operating room for an organ donation operation and that there was initial reluctance to do so.

The federal agency that regulates the US transplant system is investigating, and the Kentucky attorney general’s office said it is “reviewing the facts to determine an appropriate response.” A coalition of OPOs and other donation groups is urging that the findings be made public quickly and that the public not speak up until then, saying any deviation from strict industry standards would be “completely unacceptable”.

The number of people opting out of organ donation has increased

Donate Life America found that an average of 170 people a day removed themselves from the national donor registry in the week after media coverage of the allegations — 10 times more than in the same week in 2023. That doesn’t include requests disposal by email or state registries, another way people can volunteer to become donors when they eventually die.

Dils’ organ agency, Gift of Life Michigan, typically gets five to 10 calls a week from people asking how to get off their state’s list. In the past week, her staff handled 57 such calls, many mentioning the Kentucky case.

The Kentucky accusations reverberated in France

Unlike the voluntary donation system in the US, French law assumes that all citizens and residents will be organ and tissue donors upon death, unless they clearly opt out.

After reports from Kentucky reached France, the number joining that nation’s donation-refusal registry rose from about 100 people a day to 1,000 a day in the past week, according to the French Biomedicine Agency.

Dr. Régis Bronchard, deputy director of the agency, said the spike “reflects anxiety, misunderstanding among the general public” that could have “catastrophic consequences”.

What should happen after death and before organ donation

Doctors can declare two types of death. What is called cardiac death occurs when the heart stops beating and breathing stops, and they cannot be restored.

Brain death is declared when the entire brain permanently stops functioning, usually after a major traumatic injury or stroke. Ventilators and other machines keep the heart beating during special tests to say.

Only about 1% of deaths occur in a way that allows someone to become an organ donor – most people pronounced dead in a hospital will be quickly transferred to a funeral home or morgue.

But most organ donations are from brain-dead donors. It is only after this declaration that the donor agency takes responsibility for the deceased, searching for potential recipients and scheduling recovery surgery – while usually nurses at the hospital where the person died continue to care to ensure that their equipment is maintained organs properly until they are harvested.

What if something goes wrong?

The donor agency and transplant surgeons who arrive to collect organs must check records of how death was determined. Anyone—donor hospital employees, donor agency staff, or surgeons—who sees anything concerning should speak up immediately.

“This is extremely rare,” said Dr. Ginny Bumgardner, a transplant surgeon at Ohio State University who also heads the American Society of Transplant Surgeons, about the Kentucky case.

In operating rooms, “the whole process stops” if someone sees a hint of distress, and independent doctors are called in to verify that the person is truly dead, Bumgardner said. In her 30-year career, “I’ve never had a case where the initial statement was wrong.”

Georgetown’s Sulmasy agreed that problems are rare. But he said there is a lot of variation in the tests different hospitals do to determine whether someone is brain dead, whether they are a potential organ donor or not. Doctors are debating whether to add additional testing requirements.

Stricter criteria could “reassure the public that we have done enormous due diligence before determining that someone has died,” he said. It could help “convince people to stop tearing up their organ donor cards.”

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John Leicester, AP chief correspondent in Paris, contributed to this report.

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