Article In Brief
How should neurologists respond if a patient with a fatal neurologic condition asks about the prospect of donating their organs? Experts weigh in on answers and how to frame discussions with patients and their caregivers.
For some people with life-threatening neurologic disease, the idea of donating their organs after death can offer some sense of purpose and meaning. And in many cases, these patients are able to donate such organs as corneas and skin to others or donate brain tissue to research. But with most fatal chronic neurologic conditions, the circumstances of death thwart a patient's desire to make a lifesaving donation of solid organs such as heart, lungs or kidneys. And during COVID-19, as the death toll in the US exceeds 50,000, the issues are ever more paramount.
“With many neurologic conditions, death is a lingering process that is not conducive to recovering healthy organs,” said James Russell, DO, MS, FAAN, a neurologist at Lahey Hospital and Medical Center in Massachusetts and a past chair of the AAN's Ethics, Law and Humanities Committee.
But there have been some rare circumstances under which patients with neurodegenerative diseases, notably amyotrophic lateral sclerosis (ALS), have successfully donated solid organs. In 2011, Catherine Lomen-Hoerth, MD, PhD, FAAN, director of the ALS Center at the University of California, San Francisco, found herself caring for a patient with the disease who had herself been a nurse in that hospital. “She very much wanted to be an organ donor,” said Dr. Lomen-Hoerth. “It gave her a lot of purpose.”
Dr. Lomen-Hoerth explained to her patient that in order to maximize organ viability, she would not be able to die at home, as many people wish to do, but rather that she would need to be placed on a ventilator and die in a surgical suite at the hospital. (Typically, only about 1 percent of ALS patients elect to be placed on a ventilator.) The patient was still committed to her decision—indeed, as a nurse she felt like dying in her “home hospital” was almost as comfortable an environment as dying at home.
“Because we had no prior experience with this, her wish to donate her organs spurred us in the ALS Center to create a protocol and get approval for it from the hospital,” she said. “It took a couple of months to get all of that in order. It was cumbersome, but it allowed her to contribute to the design of the protocol, which included full informed consent, education, and a psychiatric evaluation.”
When the patient did pass away, the process of death took approximately 20 minutes, which meant that her heart and lungs were no longer viable for donation, but her kidneys were donated. “That's another discussion that has to happen,” said Dr. Lomen-Hoerth. “The patient needs to understand that it is possible to go through all this and your solid organs still can't be used.”
Since then, only one other patient in Dr. Lomen-Hoerth's center has asked about solid organ donation. That patient was admitted to the hospital twice with a plan of donating his organs after being removed from the ventilator, but after being in the hospital elected not to do that. He ultimately died peacefully at home after taking medication provided to him under the California End of Life Option Act, a law enacted in June 2016 which allows terminally ill adults to access medical aid in dying by self-administering lethal drugs, provided specific circumstances are met.
The Conversation about Organ Donation
Although circumstances like these are rare, how should neurologists respond if a patient with a fatal neurologic condition asks about the prospect of donating their organs? What are the ethical ramifications and guidelines for such discussions?
Unlike Dr. Lomen-Hoerth's patient, most people who might ask such a question will not have a medical background, so it is essential that they understand what is involved, Dr. Russell said. “Organ donation is typically not an option for most patients with chronic neurological illness, as organ viability is lost through the slow dying process. In an ALS patient, for example, in order to preserve viable organs to allow successful donation, they would have to be placed on a ventilator while still breathing on their own, and supported until they lose their breathing ability, at which time they would be made comfortable in the hospital, and then removed from the ventilator. When their heart subsequently stopped, organs could be donated. This process would be difficult for most patients and most institutions.”
“Patients who have worked through their own grieving processes and have relationships with palliative care and have come to a greater acceptance of what the future holds for them, at some point may think about a legacy that allows them more peace in their passing. Organ donation is obviously a very robust way to leave a sacred legacy in the world,” said Michael Rubin, MD, FAAN, associate professor in the departments of neurology and neurotherapeutics as well as neurological surgery at University of Texas Southwestern Medical Center in Dallas and a member of the AAN Ethics, Law, and Humanities Committee as well as the Brain Death Working Group Subcommittee.
“But while most patients who bring this up are very well meaning, they are moving into a landscape that is fraught with ethical dangers of which they might not be aware, and their neurologists might not have thought about how to answer these questions.”
Some patients with fatal neurologic conditions who see organ donation as offering a sense of purpose, particularly those who live in a state that has legalized medical aid in dying (MAID), may wonder why they cannot choose to end their lives this way in order to make organ donation more feasible.
That's a question that has come up with some ALS patients, Dr. Lomen-Hoerth said, including the nurse who donated her kidneys. “Even someone who was very educated about medicine had trouble understanding why we couldn't just remove her organs in the operating room while she was in the process of dying, so her organs could be as viable as possible. We have to explain to them that ethically, if a person is not dead, we cannot do that.”
“The dead donor rule essentially requires that organ recovery is not the means of causing death or encourages death. Death must come from neurological or cardiopulmonary determinations, as a natural consequence of someone's disease,” Dr. Rubin explained.
“If a patient is particularly altruistic and wants to pursue organ donation, their doctors have to explain that even if what they are saying sounds right for them, when we make policy, we have to consider every situation that may occur. To allow an exception might introduce the potential for exploitation, so we may have to say that organ donation might not be the way that they can leave a legacy.”
Organ donation after euthanasia is permitted in Belgium and the Netherlands, but the practice is controversial and is relatively rare, as a 2017 report in JAMA noted.
“In the United States, to date our laws and ethical policies are focused on protection against the possibility that dying patients would be coerced into giving their organs,” said Dr. Russell. “It would not be hard to envision a scenario in which that might happen, and as someone who takes care of those dying patients, that is a line I do not want to cross.”
Dr. Lomen-Hoerth advises hospitals and health systems to establish protocols in advance for addressing questions about organ donation from patients with progressive, fatal neurologic and other conditions, even if such questions are rare.
“You want to have something very structured in place so you can be sure you are addressing all of the potential ethical, legal and medical questions, and if you have this in place in advance, you don't have to start from the beginning when a patient expresses an interest in organ donation.”
Having a medical team that is informed, well educated, and prepared to discuss the topic openly is extremely important, Dr. Rubin said. “The last thing a patient wants when they bring an idea to you is for you to dismiss it outright and not be willing to talk about it. Transparency and discussing the realities and mechanics of these options can be very valuable. We want to make sure that people are choosing a path that provides the best value in the months or years of life that they have remaining with their loved ones, and that is not just focused on one part of their overall legacy plan. If fate may have it that following this path leads to the possibility of organ donation, a gift that can save someone else, that is fortuitous, but it should not be the driver of a person's care.”