People are choosing not to participate in organ donation programs after reports of a man wrongly declared dead

WASHINGTON (AP) — Transplant experts are seeing a spike in the number of people withdrawing organ donor registrations. Their confidence is shaken by reports that organs are close to being recovered from a Kentucky man who was wrongly declared dead.

It happened in 2021 and although 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 being hit after the case was recently made public. A drop in donations could cost the lives of people awaiting a transplant.

“Organ donation is based on public trust,” said Dorrie Dils, president of the Association of Organ Procurement Organizations (OPOs). When it is eroded, it “takes years to come back.”

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

The key is to ensure that “all physicians are doing the right tests and doing them properly,” says Dr. Daniel Sulmasy, a bioethicist at Georgetown University.

An alleged near miss in Kentucky

The 2021 case first came to light at a congressional hearing last month, with unconfirmed details in subsequent media reports — allegations that a man declared dead days earlier woke up on the way to the operating room for organ donation surgery and that there was initial reluctance to make it happen.

The federal agency that regulates the U.S. transplant system is investigating, and the Kentucky attorney general’s office said it is “examining the facts to determine an appropriate response.” A coalition of OPOs and other donation groups are calling for the findings to be made public quickly and for the public to withhold judgment until then. Any deviation from the industry’s strict standards would be “completely unacceptable”.

The number of people who opt out of organ donation has increased enormously

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

Dils’ own organ agency, Gift of Life Michigan, usually gets five to 10 calls a week from people asking how they can remove themselves from that state’s list. Over the past week, her staff has fielded 57 such calls, many of which mentioned the Kentucky case.

Kentucky’s accusations reverberated in France

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

After the reports from Kentucky reached France, the number of people participating in that country’s donation refusal registry rose from about 100 people per day to 1,000 per day in the past week, according to the French Biomedicine Agency.

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

What should happen after death and before organ donation

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

Brain death occurs when the entire brain ceases to function permanently, usually after a severe traumatic injury or stroke. Ventilators and other machines keep the heart beating during special tests to tell this.

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

But most organ donations come from brain-dead donors. Only after that declaration does the donor organization take responsibility for the deceased, search for potential recipients and schedule a retrieval operation – while nurses at the hospital where the person died usually continue care to ensure that the equipment receives their organs properly maintained until picked up.

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 staff, donor agency staff or surgeons – who sees something alarming is expected to report it immediately.

“This is extremely rare,” said Dr. Ginny Bumgardner, a transplant surgeon from Ohio State University and leader of the American Society of Transplant Surgeons, on the Kentucky case.

In operating rooms, “the whole process stops” if someone sees a hint of trouble, and independent doctors are called in to check whether the person is really dead, Bumgardner said. In her 30-year career, “I have never had a case where the original statement was incorrect.”

Georgetown’s Sulmasy agreed that problems don’t happen often. But he said there is a wide variation in the tests different hospitals perform to determine whether someone is brain dead, or whether he or she is a potential organ donor or not. Doctors are debating whether to add additional testing requirements.

Stricter criteria could “assure the public that we have done a tremendous amount of research before we determine someone is dead,” he said. It could help “get people to stop tearing up their organ donor cards.”

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

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The Associated Press Health and Science Department receives support from the Howard Hughes Medical Institute’s Science and Educational Media Group. The AP is solely responsible for all content.