DAVID GREENE, HOST:
Today, in Your Health, we'll revisit a young stroke patient we met earlier this year. But first, Dave Adox wanted to plan a good death and to donate his organs. At 44 years old, ALS had paralyzed him, though the disease leaves organs healthy. When he decided it was time, his last wishes ran into an American reality - dying the way you want to can be difficult. Karen Shakerdge from member station WXXI reports.
KAREN SHAKERDGE, BYLINE: Dave Adox is sitting at his home in South Orange, N.J. He can't move anything except his eyes, and a machine breathes for him. In a few days, Adox wants to go off the ventilator.
Can you start by telling me what's on your mind?
Adox spells out words letter by letter by focusing on a tablet in front of him. An infrared camera follows his eye movement.
DAVE ADOX: Sure. Thanks for doing story.
SHAKERDGE: Adox registered to be an organ donor long before he got ALS, and it's since become even more important to him.
ADOX: The disease paralyzed my entire body in six months. I definitely developed a greater appreciation of the value of the working human body.
SHAKERDGE: To donate organs, he'd need to come off his breathing machine and die in a hospital. So Dave Adox and his husband made a plan. They'd go to the hospital where Adox was originally hooked up with the ventilator. The doctors there had reassured Adox he could ask to come off the ventilator any time. Family and friends gathered for a big last weekend celebration with him, but then lawyers intervened.
ADOX: Then 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.
SHAKERDGE: Physicians withdraw life support every day for patients in hospitals who choose to refuse care through surrogates or themselves. That's generally not considered physician-assisted suicide or euthanasia. The key being it's done for someone already in the hospital. But Adox asked to be admitted just to end his life, and despite the planning, his request made some people uncomfortable. John Bach has been Adox's primary physician at University Hospital in Newark, N.J.
JOHN BACH: You see, I could have given a prescription for morphine, and he could have been taken off the ventilator at home, but he wanted his organs to be used to save other people's lives.
SHAKERDGE: Bach supported the plan and so did other physicians at the hospital.
BACH: We have an ethics committee that approved it 100 percent. We have palliative care committee - they all agreed 100 percent, but it didn't make any difference to the lawyers of our hospital.
SHAKERDGE: University Hospital declined to comment, but Bach says the hospital's lawyers were concerned about liability.
BACH: The legal issue is, what is euthanasia? Are you killing a patient by taking him off a respirator that's keeping him alive?
SHAKERDGE: Because so much of medicine is about keeping people alive, this question is tricky in cases like this, says ethicist Art Caplan.
ARTHUR CAPLAN: Would the practice be seen as getting too oriented toward getting the organs, not oriented enough toward how we manage a good death?
SHAKERDGE: But transplant surgeon Joshua Mezrich at the University of Wisconsin Hospital says it's important to interpret the doctor's mandate of do no harm broadly.
JOSHUA MEZRICH: 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.
SHAKERDGE: Eventually, a team at Mt. Sinai Hospital in New York City agreed to admit Dave Adox.
DANNI MICHAELI: We sat. We listened to '80s music, and I read Dave a poem.
SHAKERDGE: This is Danni Michaeli, Adox's husband.
MICHAELI: And when they were really sure and we were all really sure that he was in a very deep state of sedation, they disconnected his breathing machine.
SHAKERDGE: Adox died soon after and was able to donate his liver and kidneys.
MICHAELI: The person that we were trying to do a direct donation for was a match, and he has Dave's kidney right now.
SHAKERDGE: For NPR News, I'm Karen Shakerdge.
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