Transplant experts are seeing a rise in the number of people canceling their organ donation registrations; Their confidence is being shaken by reports that organs were nearly harvested from a Kentucky man who was mistakenly declared dead.

The incident took place in 2021, and although the details are unclear, surgery was avoided and the man is still alive. However, after the case was recently made public, donor registries in the US and even across the Atlantic were affected. A drop in donations could cost the lives of people awaiting transplants.

“Organ donation relies on public trust,” said Dorrie Dils, president of the Organization of Organ Procurement Organizations (OPO). Once worn out, “it takes years to regain.”

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Only doctors caring for patients can determine whether patients have died; The law prohibits anyone interested in organ donation or transplantation. The allegations raise questions about how doctors make this decision and what should happen if anyone sees reason to raise suspicion.

Georgetown University bioethicist Dr. “The important thing is to ensure that all doctors do the right tests and do them well,” said Daniel Sulmasy.

Alleged near miss in Kentucky

The 2021 case first came to light at a congressional hearing last month, and subsequent media reports included unconfirmed details; Allegations that a man who had been declared dead days earlier woke up and was found there on his way to the operating room for organ donation surgery. It was initially a reluctance to make it happen.

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

The number of people giving up organ donation increased

Donate Life America found that an average of 170 people per day removed themselves from national donor registries in the week following media coverage of the allegations; This number is 10 times higher than in the same week in 2023. This number does not include emailed takedown requests or state records. It’s another way people can volunteer to be donors when they eventually die.

Dils’ own organ agency, Gift of Life Michigan, typically receives five to 10 calls a week from people asking how they can remove themselves from that state’s list. Last week, his staff handled 57 such calls, most citing the Kentucky case.

Kentucky claims resonated in France

Unlike the voluntary donation system in the United States, French law assumes that all citizens and residents will become organ and tissue donors after death unless they explicitly opt out.

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

Deputy director of the agency, Dr. Régis Bronchard said that this increase “reflects the anxiety and lack of understanding among the public” that could lead to “catastrophic consequences”.

What needs to happen after death and before organ donation?

Doctors can report two types of deaths. When heartbeat and breathing stop and it is not possible to restore them, a phenomenon called cardiac death occurs.

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

Only 1% of deaths occur in a way that would allow someone to become an organ donor; Most people declared dead in a hospital are quickly transported to a funeral home or morgue.

However, most organ donations are made from brain dead donors. Only after this declaration does the donor agency assume responsibility for the deceased, search for potential recipients and plan the retrieval surgery; Meanwhile, nurses at the hospital where the person died often continue to ensure that the equipment is properly maintained until the organs are harvested.

What if something goes wrong?

The donor institution and transplant surgeons who come to receive organs must check the records regarding how death was determined. Anyone who sees anything concerning (donor hospital staff, donor agency staff or surgeons) needs to speak up immediately.

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

Bumgardner said that if someone in operating rooms noticed something was wrong, “the whole process stopped” and independent doctors were called in to double-check that the person was actually dead. In his 30-year career, “I have never encountered a case where the original statement was false.”

At Sulmasy in Georgetown, consensual issues are rare. But he said there are wide variations in the tests different hospitals do to determine whether someone is brain dead or a potential organ donor. Doctors are debating whether to add additional testing requirements.

He said stricter criteria “could reassure the public that we do a tremendous amount of review before determining that someone is dead.” This could help “people stop tearing up their organ donor cards.”