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Plan to donate organs raises fears over euthanasia
At 44, Dave Adox was facing the end of his twoyear battle with ALS, also known as Lou Gehrig’s disease. He needed a ventilator to breathe and couldn’t move any part of his body, except his eyes. Once he started to struggle with his eyes — his only way to communicate — Adox decided it was time to die.
He wanted to donate his organs, to give other people a chance for a longer life. To do this, he’d need to be in a hospital when he went off the ventilator.
“I was always interested in organ donation and had checked the box on my license,” Adox said last spring at his home in South Orange, N.J., through a machine that spoke for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. ‘Greater appreciation’
“When I got diagnosed with ALS at 42, and the disease paralyzed my entire body in six months, I definitely developed a greater appreciation of the value of the working human body,” he said.
Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital in Newark, N.J., where Adox often had been treated, and have his ventilator disconnected.
The doctors there had reassured Adox he could ask to come off the ventila- tor any time.
In May, his family and friends flew in from around the country and joined neighbors for a big celebration of Adox’s life. They spent one last weekend with him, planting a tree and painting a big, colorful mural in his honor. Some wore T-shirts printed with Adox’s motto, “Celebrate everything until further notice.”
But their plan suddenly changed when University Hospital’s attorneys intervened.
“At the 11th hour, they emailed us and said their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.” Liability concern
Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That’s generally not considered physicianassisted suicide or euthanasia — the key being that the patient is already in the hospital.
But Adox was asking to be admitted to the hospital specifically to end his life. And despite the planning, his request made some people uncomfortable.
Dr. John Bach, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox’s primary physician.
Bach understood and approved of his patient’s plan to end his life and share his organs.
Other physicians at the hospital supported Adox’s plan, too.
“We have an ethics committee that approved it 100 percent,” Bach said. “We have a palliative care committee — they all agreed, 100 percent. But it didn’t make any difference to the lawyers of our hospital.”
University Hospital has declined several requests for comment, but Bach said the hospital’s attorneys were concerned about liability.
“The legal issue is: What is euthanasia?” Bach explained. “Are you killing a patient by taking him off a respirator that’s keeping him alive?” ‘Change the culture’
Planning one’s death to allow for organ donation raises some thorny questions, said Arthur Caplan, director of the division of medical ethics at New York University and author of “Replacement Parts: The Ethics of Procuring and Replacing Organs in Humans.”
Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones — whether real or perceived — of coercion or conflict of interest, Caplan pointed out.
“You’d have to change the culture of critical care and say it’s OK to talk with the person about organ donation as part of their dying,” he explained.
This issue may get bigger, Caplan believes, as states move to legalize physician-assisted death. Although, so far, there has been little public dis- cussion because “it’s too controversial.”
“If we went in the direction of bringing more people who are dying — whether it’s ALS or whatever it is — into settings where we could have them consider organ donation because they’re on the machines, we’d probably have a bigger pool of organ donors,” Caplan said.
But that approach would have a downside, too, he continued. People might perceive doctors as more focused on “getting organs” than caring for dying patients. Saying goodbye
After University Hospital declined to admit Adox, he and his husband reached out to six other hospitals through various intermediaries. They waited for days to hear back.
In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Dr. Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.
Finally, on the palliative care floor at Mount Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.
“We sat; we listened to ’80s music. I read Dave a poem,” Michaeli recounted, close to tears. “And when they were really sure — and we were all really sure — that he was in a deep state of sedation, they disconnected his breathing machine.”
And in the end, Adox’s wishes were met. He was able to donate his liver and kidneys.