At 44-years-old Dave Adox was facing the end of his two year 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 go off his breathing support in a hospital.
“I was always interested in organ donation and had checked the box on my license,” Adox said at his home in South Orange, New Jersey, through a machine that speaks for him. He laboriously spelled out these words, letter by letter, by focusing his eyes on a tablet. “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.”
Adox and his husband, Danni Michaeli, made a plan. They would go to University Hospital, in Newark, where Dave had been treated, and have his ventilator disconnected.
In May of this year his family and friends flew in. Together with neighbors they celebrated a last weekend with Dave. They planted a tree and painted a big, colorful mural in his honor. Some wore t-shirts printed with Dave’s motto “Celebrate everything until further notice.”
But the plan quickly changed. Adox heard from the hospital.
“Their lawyers had stopped the process because they were afraid it looked too much like assisted suicide,” Adox explained. “I was crushed.”
Physicians withdraw life support every day for patients already in hospitals who refuse care. But Adox asked to be admitted, specifically to go off his ventilator. This nuance seems to make all the difference.
In the United States, about 22 people die each day waiting for an organ transplant, according to the United Network for Organ Sharing. One donor can save up to eight lives. Yet Adox’s experience reveals that medical systems are not set up to accommodate terminal patients who wish to be donors. Hospitals are held back by fear of liability or bad publicity, accentuated by the controversy around physician-assisted dying.
Change of plans
Adox and Michaeli were surprised when the hospital turned them down since they had made a point to complete an advance directive. When Dave had a tracheostomy tube put in, he was reassured that he could ask for it be removed anytime.
This is especially important, says John Bach, the physician who treated Adox, because ALS patients can become “locked in.”
“To be locked in means you cannot move anything at all — not a finger, not a millimeter. You cannot move your eyes, you cannot move your tongue, you cannot move your facial muscles at all. You cannot even wink to say yes or no,” says Bach, professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, affiliated with University Hospital.
But, Bach adds, Adox was fully capable of expressing his wishes clearly. And it troubled him that his patient’s wishes could not be met.
“Myself and all the other doctors that took care of him in the hospital were almost as upset about it as he and his husband were. We felt that this was grossly inappropriate — that lawyers would impede the judgment of the patients and physicians in this matter,” Bach says.
University Hospital declined several requests for comment.
Do no harm
Transplant surgeon Joshua Mezrich at the University of Wisconsin Hospital has had patients with ALS who, like Adox, wanted to donate organs. He says hospitals need to create protocols for these situations — even though they’re rare.
He acknowledges this could challenge a key pillar for physicians: to do no harm.
“I think it’s fair to say that doing no harm doesn’t always mean making people live as long as possible — keeping them alive no matter what. Sometimes, it means letting them have the death that they want and it means letting them give this gift if that’s what they want,” Mezrich says.
But planning one’s death to allow for organ donation, raises some thorny questions, says 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 donation is discussed with family members after a patient dies, to avoid any tones – whether real or perceived – of coercion or conflict of interest.
“You’d have to change the culture of critical care and say it’s okay to talk with the person about organ donation as part of their dying,” Caplan explains.
This issue may get bigger, Caplan says, as states move to legalize physician-assisted death. Although so far there has been little discussion because “it’s too controversial.”
“Good news — 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,” says Caplan.
Bad news, he continues, people may perceive doctors as more focused on “getting organs” than caring for dying patients.
There is at least one hospital that has established a policy for patients with ALS who want to be organ donors. Froedtert Hospital and Medical College of Wisconsin in Milwaukee just approved a policy in May.
About a year ago a patient, like Adox, wanted to donate her organs but the hospital wasn’t able to facilitate her wish. The experience prompted physicians to develop a multi-step system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.
“Obviously we’re all sensitive to any perception of assisted expedition of death but at the end of the day the patient's wishes count for a lot,” says William Rilling, chief of staff and professor of radiology and surgery at Froedtert Hospital.
Not giving up
Michaeli and Adox reached out to a total of six hospital through various intermediaries. They waited for days to hear back. Sensing it might not happen, Michaeli asked Adox if he wanted to consider hospice instead, since his family and friends wouldn’t be able to stay in town indefinitely. Adox wanted to wait.
“He said to me, ‘I think about all of the people who could potentially live because of my organs,’” recalls Michaeli. “And what can I say to that? I can only love him more for that.”
In the end, LiveOnNY, the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, Amy Friedman, went to visit Adox at his home to vet his suitability as a donor.
“It turned out that there was a hospital partner that felt very supportive of this circumstance, understood the challenges that they would be faced with, [and] were prepared to be supportive of what Dave had wanted and would be able to provide a bed," says Friedman.
On the palliative care floor at Mt. Sinai Hospital on May 18, Adox and Michaeli prepared to say goodbye.
“We sat, we listened to 80s music. I read Dave a poem,” Michaeli recounts. “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.”
In the end, Adox was able to donate both of his kidneys and his liver.
“It turned out the person we were trying to do a direct donation for was a match and he has Dave’s kidney right now,” Michaeli says. “I just felt this incredible swelling of gratitude for the hospital team that had helped us do this. They were granting his final wish.”
A medical ethicist from Columbia University Medical Center has since invited Michaeli to speak about this experience during their grand rounds series later this year.
This story was produced by Side Effects Public Media.