At 44 years old, Dave Adox was facing the end of his two year battle with ALS, also known as Lou Gehrig鈥檚 disease. He needed a ventilator to breathe and couldn鈥檛 move any part of his body, except his eyes. Once he started to struggle with his eyes 鈥 his only way to communicate 鈥 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鈥檇 need to be in a hospital when he went off the ventilator.
鈥淚 was always interested in organ donation and had checked the box on my license,鈥 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.
鈥淲hen 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,鈥 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 ventilator anytime.
In May his family and friends flew in from around the country, and joined neighbors for a big celebration of Adox鈥檚 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鈥檚 motto, 鈥淐elebrate everything until further notice.鈥
But their plan suddenly changed when University Hospital鈥檚 attorneys intervened.
鈥淎t 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,鈥 Adox explained. 鈥淚 was crushed.鈥
Every day, physicians withdraw life support on behalf of patients in hospitals who choose to refuse care. That鈥檚 generally not considered physician-assisted suicide or euthanasia 鈥 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.
, a professor of physical medicine rehabilitation and neurology at Rutgers New Jersey Medical School, which is affiliated with University Hospital, was Adox鈥檚 primary physician. Bach understood and approved of his patient鈥檚 plan to end his life and share his organs.
Dave Adox is surrounded by his family on the day that he died. His wish to die in a hospital so that he could donate his organs turned out to be difficult to fulfill. (Karen Shakerdge/WXXI)
鈥淚 could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,鈥 Bach said. 鈥淏ut he wanted his organs to be used to save other people鈥檚 lives!鈥
Other physicians at the hospital supported Adox鈥檚 plan, too.
鈥淲e have an ethics committee that approved it 100 percent,鈥 Bach said. 鈥淲e have a palliative care committee 鈥 they all agreed, 100 percent. But it didn鈥檛 make any difference to the lawyers of our hospital.鈥
University Hospital has declined several requests for comment, but Bach said the hospital鈥檚 attorneys were concerned about liability.
鈥淭he legal issue is: What is euthanasia?鈥 Bach explained. 鈥淎re you killing a patient by taking him off a respirator that鈥檚 keeping him alive?鈥
Previously, hospital staff had helped Adox complete an advance directive that stated, 鈥淚 do not want medical treatment that will keep me alive if I have an incurable and irreversible illness and the burdens of continued life with life-sustaining treatment become greater than the benefits I experience.鈥
Having an advance directive on file is especially important for ALS patients, Bach said, because they can eventually become 鈥渓ocked in,鈥 unable to express their wishes.
鈥淭o be locked in means you cannot move anything at all 鈥 not a finger, not a millimeter,鈥 Bach said. 鈥淵ou 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.鈥
In this particular case, the hospital wouldn鈥檛 have had to rely on the directive, Bach noted; Adox was still fully capable of expressing his wishes clearly. It deeply troubled the physician that his patient鈥檚 wishes could not be met.
鈥淢yself 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,鈥 Bach said.
Michaeli and Adox at their home in South Orange, N.J., in fall of 2014. (Courtesy of Evan Bachner)
, a transplant surgeon at the University of Wisconsin Hospital, has had patients with ALS who, like Adox, wanted to donate organs. He believes hospitals need to create protocols for these situations 鈥 even though such cases are rare.
this could challenge a key principle for physicians: First, do no harm. But that mandate can and should be interpreted broadly, he believes.
鈥淚 think it鈥檚 fair to say that doing no harm doesn鈥檛 always mean making people live as long as possible 鈥 keeping them alive no matter what,鈥 Mezrich said. 鈥淪ometimes, it means letting them have the death that they want, and it means letting them give this gift, if that鈥檚 what they want.鈥
Still, planning one鈥檚 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 .
Typically a separate team of physicians or an organ procurement team discusses donation with family members after a patient dies, to avoid any tones 鈥 whether real or perceived 鈥 of coercion or conflict of interest, Caplan pointed out.
鈥淵ou鈥檇 have to change the culture of critical care and say it鈥檚 OK to talk with the person about organ donation as part of their dying,鈥 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 discussion because 鈥渋t鈥檚 too controversial.鈥
Adox, before he was diagnosed with ALS. (Courtesy of Evan Bachner)
鈥淚f we went in the direction of bringing more people who are dying 鈥 whether it鈥檚 ALS or whatever it is 鈥 into settings where we could have them consider organ donation because they鈥檙e on the machines, we鈥檇 probably have a bigger pool of organ donors,鈥 Caplan said.
But that approach would have a downside, too, he continued. People might perceive doctors as more focused on 鈥済etting organs鈥 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 its partner Medical College of Wisconsin, in Milwaukee, approved such a policy in May.
About a year ago there, a patient with ALS wanted to donate her organs, but the hospital wasn鈥檛 able to honor her wish. The experience prompted physicians to develop a multistep system that includes evaluation from psychologists, an ethics review and considers technical matters such as transportation or insurance coverage.
鈥淥bviously we鈥檙e all sensitive to any perception of assisted expedition of death,鈥 said , vice chair of clinical operations of radiology at Froedtert Hospital. 鈥淏ut, at the end of the day, the patient鈥檚 wishes count for a lot.鈥
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.
Adox, with family and friends, taking one last walk in Central Park together in May. (Karen Shakerdge/WXXI)
In the end, , the organ procurement organization based in New York City, stepped in to help. The organization鈥檚 medical director, , went to visit Adox at his home to vet his suitability as a donor.
鈥淭here was a hospital partner,鈥 Friedman said, 鈥渢hat felt very supportive of this circumstance, understood the challenges that they would be faced with, [and was] prepared to be supportive of what Dave wanted and would be able to provide a bed.鈥
Finally, on the palliative care floor at Mount Sinai Hospital on May 18, Adox and Michaeli prepared to say their goodbyes.
鈥淲e sat; we listened to 鈥80s music. I read Dave a poem,鈥 Michaeli recounted, close to tears. 鈥淎nd when they were really sure 鈥 and we were all really sure 鈥 that he was in a deep state of sedation, they disconnected his breathing machine.鈥
And in the end, Adox鈥檚 wishes were met 鈥 he was able to donate his liver and kidneys. Michaeli said he felt 鈥渁n incredible swelling of gratitude鈥 to the hospital team who helped make that happen.
鈥淭he person we were trying to do a direct donation for was a match,鈥 Michaeli said. 鈥淎nd he has Dave鈥檚 kidney right now.鈥
This story is part of a partnership that includes , and Kaiser Health News.