A life for a life: The ethical questions of organ donation

Nineteen-year-old Thomas Caines was halfway through his first year at Covenant College in Tennessee when he decided to return home in early 2022. For weeks he had battled chronic fatigue, cold-like symptoms, and a cough that persisted despite numerous doctor’s visits and medicines.

A few months later, Caines began experiencing stomach pains and a high heart rate. At the emergency room, an echocardiogram showed that his heart was failing. A cardiologist later told him that a virus had likely attacked his heart years earlier and caused it to lose function over time. Within days, Caines was transferred to Vanderbilt University Medical Center in Nashville and placed on the transplant list. “For us, it was kind of a fast and uncertain process. There wasn’t a lot of waiting time, there wasn’t a lot of time to ask questions,” said his mother, Sarah. “There is a bit of a guilt feeling that for my son to live, someone else’s son will have to die.”

Caines spent 22 days on the transplant list. On the morning of July 6, 2022, four days after his birthday, his doctors told him there was a heart that was a match. They scheduled surgery for the next morning.

More than 100,000 people in the United States are on the national transplant waiting list. But last month, the Department of Health and Human Services said it would reform the organ donation system after the department’s Health Resources and Services Administration discovered that some hospitals began organ procurement even when patients showed signs of life. As the country considers how to meet the needs of the thousands of patients on transplant waiting lists, some experts are questioning when it is ethical to harvest organs from a patient who has died—and when that patient qualifies as truly dead.

While surveys show that 90% of adults support organ donation, only 170 million, or about 60%, are registered organ donors. Doctors completed more than 48,000 transplants last year, but an estimated 13 people die each day waiting for a new organ, according to the Organ Procurement and Transplantation Network. Congress established the national public-private partnership in 1984 to oversee the country’s organ donation system, supervising 55 organ procurement organizations (OPOs) that work with hospitals and donor families to coordinate donations for specific regions.

In 2021, a 36-year-old Kentucky man was declared dead but woke up on the operating table as doctors were preparing to remove his organs for donation. He went on to make a full recovery. After the case first gained national attention last year, the OPO overseeing it said that its staff and hospital employees had followed protocols to maintain the patient’s safety. The Association of Organ Procurement Organizations criticized initial reporting on the story, saying it had resulted in people removing their names from the organ donation registry. “The absence of all available evidence in this story fuels a misinformation machine which is already sowing doubt about the organ donation process,” it said.

In its investigation, the Health Resources and Services Administration examined 351 cases in which doctors authorized organ donation but did not complete the process, like in the Kentucky case. Among those, 73 patients showed neurological signs that would disqualify them from donation and 28 may not have been deceased when the procurement procedure began. Following the investigation, the HHS directed the OPO to update its safety policies, provide complete information about the donation process to families and hospitals, and report any safety-related organ donation stoppages. The organization said it would address the agency’s guidance. Meanwhile, health officials said they had received similar reports across the country.

What is death?

Circulatory death, when the heart stops beating and blood stops circulating through the body, has traditionally been the most common way to determine when a person has died, said Scott Henderson, associate professor of philosophy at Luther Rice College and Seminary. In cases of circulatory death, doctors wait 2-7 minutes after a patient’s heart stops beating, according to Henderson, before they begin retrieving organs. If a doctor determines that medical care cannot heal a patient being kept alive on a ventilator, their loved ones may agree to remove life support to allow the patient to die naturally, Henderson said.

In 1968, an ad hoc committee at Harvard Medical School published a report about so-called irreversible coma—also known as brain death—that would form the basis of a new way to determine death.

The report said patients who did not respond to external stimuli, did not display spontaneous muscle movement, had no reflexes, and had a flat reading on a brain scan were unlikely to regain consciousness. While it gave diagnosing procedures and justification for its use, the report never listed a medical rationale for why people should be considered dead under the criteria, said Henderson.

“It will defend transplant surgeons from the perception of being organ-stealing killers,” he said. “It would also, of course, increase the supply of organs.” A brain-dead patient is often supported on a ventilator and their heart is still beating after they are declared dead.

Dr. Heidi Klessig, a retired anesthesiologist who now advocates for organ donors’ rights, criticized the Harvard report. “They thought they could redefine them as being dead on utilitarian grounds. They said that it would help free up ICU beds and it would remove the controversy in using them as organ donors,” she said.

As states began adopting their own statutes and criteria to determine death, a commission under then-President Jimmy Carter in 1980 created the Uniform Determination of Death Act to standardize legal definitions. More than two-thirds of U.S. states have adopted the model law, which recognizes circulatory and brain death as acceptable criteria. But some experts, including Henderson, are concerned that patients who are declared brain dead but whose bodies are still functioning may still be alive but unable to communicate.

Henderson pointed to cases like that of Jahi McMath, a California teenager who in 2013 was declared brain dead after a surgical accident. Her mother fought to keep her on life support, and she lived nearly five more years before dying from abdominal complications. During that time she went through puberty and developed some responsiveness to commands. Henderson said not enough is known about how the brain functions to truly understand when a person loses consciousness and when their spirit leaves their body.

Despite uniformly recognizing brain death as death, hospitals have varying criteria for diagnosing the condition, Henderson said. And while he does not believe that doctors intentionally ignore signs of life in order to obtain organs for transplant, he said some doctors believe that apparent loss of brain function indicates a person is no longer aware of their surroundings. “The biblical principle here is that you can’t do evil to bring about good. And if you’re killing someone in the process of trying to do good … then it seems to me, you’re violating that moral norm,” Henderson said.

For years, doctors and medical organizations have called for revising the Uniform Determination of Death Act. Many doctors say the act has failed to keep up with medical advancements and new diagnostic tests that show some brain activity may continue in patients previously considered brain dead.

“You’ve had some of the smartest brains in the world working on this for the past five years, and we still have no consensus,” said Dr. Brick Lantz, the vice president of advocacy and bioethics for the Christian Medical and Dental Association. Lantz said a committee of bioethicists, doctors, organ transplant experts, and representatives from different faiths should discuss the issue.

“This is a very complex medical reality,” Lantz said. “It’s a very complex bioethical reality. It’s a very complex religious reality. It’s a very complex personhood reality, with ‘What is Imago Dei?’ and ‘What is life?’”

New techniques, old questions

Dr. Klessig, the former anesthesiologist, said one night when she was on call during her residency, her assigning doctor asked her to anesthetize a young man who was declared brain dead and was going to donate his organs. Though doctors said the man was dead, Klessig saw his vital signs were strong.

She planned to give the man a paralyzing agent and pain medication to stop any involuntary movement, but her training doctor recommended she also give him a drug to block consciousness. That was not part of standard training when treating supposedly dead patients. “To my regret and shame, I went ahead and I just did what I was told,” Klessig said. “Looking at it in retrospect, I’m absolutely positive that I participated in a medical homicide.”

Now, Klessig speaks and writes about the importance of protecting the rights of donors and informing Americans about the complexities involved in determining death. She also advocates for more funding for transplants and medical treatments beyond the traditional organ donation model. “We have compassion for people with organ failure, but we want to treat people who are still living at the end of life with the respect they deserve as well,” she said.

Dr. Gary Ott is a heart surgeon in Oregon and has performed heart transplants for decades. He says brain death is an acceptable determination of death because blood has stopped flowing to the brain. “To me, as someone who believes we are created in the image of God and a precious gift of life, that spirit has fled,” he said. As a surgeon, he knows that time is of the essence when it comes to transplants because organs begin to deteriorate quickly as soon as a person dies. From when the donor is declared dead, Ott and his team have three to four hours to transplant a heart.

While he does not have issues with using circulatory or brain death criteria for organ donation, he expressed concerns about a new practice called normothermic regional perfusion. In NRP cases, doctors temporarily restore blood flow to organs while they are still inside the donor’s body in an attempt to increase the chances of a successful transplant. But doctors block the blood vessels that go to the brain, which Ott says proves that those performing the procedure know the person has not met the criteria for brain death.

Some doctors believe NRP could revolutionize the organ donation system by making more organs available for procurement and increasing those organs’ functionality.

Ott does not practice NRP during transplants. “I would rather not take a few more donors than cross the line over who’s a person and who’s not,” he said. “I think that those of us who have that line are a minority, and the NRP is gaining traction right now.”

Ott recognizes the challenges of and bioethical arguments over how to determine death. He says the process is a picture of Christ’s sacrifice of His own life so we can live. “Out of this tragedy, God can bring good and change your life. That’s a powerful message, and we get to participate in that,” he said.

But Ott wants his patients to know that he won’t be quick to push for organ donation. “I don’t want … people to look at me when I come in the room and try to decide if I’m going to do anything less than my best for them to help them live,” he said.

Reforming the system

On the heels of last month’s HHS report, the House Committee on Energy and Commerce held a hearing about safety lapses in organ donation. Lawmakers questioned executives from organ procurement organizations about the allegations of poor patient care.

Barry Massa is the CEO for Network for Hope, the organ procurement organization involved in the case of the Kentucky man who woke up on the operating table. During the hearing, Massa testified that organ procurement organizations are not involved in the decision to remove life support or issue the declaration of death.

In written testimony for the hearing, Maureen McBride, the CEO of the United Network for Organ Sharing, said that the organization supports the creation of a patient reporting system for anyone to share concerns.

In 2023, Congress passed the Securing the U.S. Organ Procurement and Transplantation Network Act, aimed at breaking up the contract for the OPTN rather than relying on just one entity. Lawmakers hoped the plan would improve transparency, oversight, and efficiency within the system.

Last fall, in a hearing to discuss implementation of the 2023 act, witnesses raised concerns about actions they said may have put donors’ lives at risk. But the Association of Organ Procurement Organizations said the discussions distracted from the real issue of organ nonuse, asserting that thousands of transplantable organs go to waste every year because of poor communication and coordination between organ procurement organizations and hospitals.

July marked three years since Thomas Caines received his heart transplant. Now married and on the road to recovery, he takes immunosuppressant medication to ensure his body continues to accept his new heart, and he attends regular checkups to see if it is functioning properly. Though Caines has struggled with side effects from the medicine, including a diminished immune system and periods of fatigue, he said the transplant gave him another chance to live a long, full life.

Several months after the surgery, the heart donor’s mother wrote a letter to Caines, telling them about her son. “He was 37, he had a kid, he was a construction worker,” Caines said.