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.

“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 ventilator anytime.

“I could have given [him] a prescription for morphine and he could have been taken off the ventilator at home,” Bach said. “But he wanted his organs to be used to save other people’s lives!”

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?”

Previously, hospital staff had helped Adox complete an advance directive that stated, “I 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.”

Having an advance directive on file is especially important for ALS patients, Bach said, because they can eventually become “locked in,” unable to express their wishes.

“To be locked in means you cannot move anything at all — not a finger, not a millimeter,” Bach said. “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.”

In this particular case, the hospital wouldn’t 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’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,” Bach said.

, 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 — 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.

“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,” Mezrich said. “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.”

Still, 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 .

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 discussion 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.

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’t 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.

“Obviously we’re all sensitive to any perception of assisted expedition of death,” said , vice chair of clinical operations of radiology at Froedtert Hospital. “But, at the end of the day, the patient’s wishes count for a lot.”

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, , the organ procurement organization based in New York City, stepped in to help. The organization’s medical director, , went to visit Adox at his home to vet his suitability as a donor.

“There was a hospital partner,” Friedman said, “that 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.”

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. Michaeli said he felt “an incredible swelling of gratitude” to the hospital team who helped make that happen.

“The person we were trying to do a direct donation for was a match,” Michaeli said. “And he has Dave’s kidney right now.”

This story is part of a partnership that includes , and Kaiser Health News.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).

“If you can do it well on the pork, you can easily do it on the person,” Frost tells his audience.

Frost consults for Braeburn Pharmaceuticals, the company behind the Probuphine, and is teaching doctors how to use it. They are learning to implant it in pork so they can later implant it in patients’ arms.

Although addiction specialists welcome , which delivers a constant dose of the drug buprenorphine over six months, at this early stage it’s complicated for physicians to add it to their repertoire. Because physicians who treat addiction don’t necessarily have experience with surgery or access to sterile spaces, some are having to learn a new skill and develop new systems.

Probuphine is unlike any other addiction treatment on the market. It promises to be life-changing for people already stable in recovery using medication-assisted treatment, who would otherwise need a daily dose of a similar drug to stay free of cravings and withdrawal pains.

“They don’t have to be dependent on taking something every day. It takes the choice out of that,” said Ella Leers, a doctor who treats substance abuse at the Carnegie Hill Institute in Manhattan.

The FDA approved Probuphine under the condition that physicians are trained and tested before implanting or even prescribing the treatment. There are three kinds of certification: implanter, prescriber or both. If doctors can’t perform the implanting themselves, they need to coordinate with another doctor who can.

To date, over 1,800 healthcare practitioners have been certified — 27 have implanted dozens of patients, according to a representative for Braeburn Pharmaceuticals, Probuphine’s maker.

, chief of addiction psychiatry at the University of Rochester Medical Center, said using the new treatment will take some adjustments. But, she added, there need to be as many effective treatments as possible for opioid use disorder.

“Now with Probuphine, we have to take it up to a whole different level because we have to have either agreements with implanters or a room where we can implant. We have to get the equipment. There will be a lot more to do,” she said. Her team was already planning on moving to another space, which will have the facilities they need to conduct minor surgery.

Prescribing Probuphine may also call for a new approach to the counseling and behavioral therapy that is typically recommended for those on medication-assisted treatment.

“If you’re implanting something that can be there for six months, you want to make sure that the patients are still coming in to get the other types of support that they can use because of their addiction issues,” said Leers.

There are also questions about insurance coverage. Billing codes are still being established. For now, doctors need to buy the Probuphine kits that run almost $5,000 themselves, and then bill patients or insurance companies.

Braeburn has offered to help physicians verify if an insurance plan would reimburse any of the cost. According to the company, Blue Cross Blue Shield and United Healthcare approved reimbursement for a few patients who have implants. Medicare, Medicaid and the VA have Probuphine in their formulary and are required to cover it if deemed medically necessary.

Despite having to get certified and the other hurdles, many doctors welcome the treatment option. Opioid drug overdoses have reached epidemic levels — roughly 78 Americans die every day from , according to the Centers for Disease Control and Prevention.

So it’s good to have a another way to deliver medication-assisted treatment, said , medical director of addiction psychiatry for the Mount Sinai Health System. Rosenthal was one of two principal investigators on a Probuphine clinical trial.

“Everybody is waking up to the fact that we’re in the midst of an opioid epidemic,” said Rosenthal. “There are actually very few medications for addiction of any kind. Given the addiction treatment system in the United States, most of the treatment that’s given is psychosocial. There’s very little use of FDA-approved medications.”

Probuphine made a difference, said Scott Jernigan of Jacksonville, Fla. He was in recovery for almost a year, taking another medication, when he signed up for a Probuphine clinical trial. He said Probuphine freed him from weekly doctor visits and pharmacy runs, and from fears of how sick he’d feel if he missed a dose or forgot to take his medication.

“[It] meant that I could become more of what my normal is going to be,” Jernigan said.

Some specialists recommend patients stay on for years, or even indefinitely. For now, Probuphine can only be prescribed for two runs of six-month use and is meant for people already stable on 8 mg or less of a medication like buprenorphine.

Authors of the JAMA study suggest further investigation of Probuphine to gauge issues often associated with buprenorphine, such as diversion or pediatric exposure.

This story is part of a reporting partnership with NPR, Side Effects Public Media and Kaiser Health News.

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

USE OUR CONTENT

This story can be republished for free (details).