How One Doctor With ALS Changed New York’s Right-to-Die Law

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Every day, Jeremy Boal practices dying. Sitting in his leather recliner or out on his back porch, he enters a meditative state and visualizes letting go of his identities: father, husband, doctor, activist. Boal will turn 59 in June, but after two and a half years of decline owing to amyotrophic lateral sclerosis, he looks older. “It’s very hard to predict,” he says. “But I don’t think I’ll clear 60.”

Boal has kind, searching eyes and a quiet, steady voice. Recently, we met at his house in Craryville, about 20 minutes outside Hudson, to talk about the Medical Aid in Dying Act, which, thanks in part to his advocacy, was signed into law by Governor Kathy Hochul on February 6. Boal’s living-room windows look out over mountains and farmland where goats roam. He and his wife, Becky, still have an apartment in Manhattan, but he spends most of his time up here. When he moves around the house, he steps deliberately, slightly dragging one leg. ALS has begun moving into his shoulders and, in the past month, his forearms. With every minuscule movement, he feels pain. In time, his muscles will weaken enough that he will struggle to speak, to swallow, and, eventually, to breathe.

In 1997, after Oregon implemented its pioneering Death With Dignity Act, Boal had serious questions about the practice. Would non–English speakers, underprivileged patients, or disabled individuals be over-represented in the pool of recipients? Might people be coerced into premature death by their family members or insurance providers? “It wasn’t that I was skeptical per se. It was more that I was curious,” Boal tells me, choosing his words carefully. “Curious to see if this first American experiment was going to play out in a safe and ethical manner.”

Boal has spent most of his life caring for others, most recently at Mount Sinai Health System, where he was the chief clinical officer for seven years. He’s devoting his final chapter to bringing nuance to the charged public debate about the MAID Act. Boal may die in this house, or he may not, but he believes the choice — where, when, and how — should be his to make.

It wasn’t inevitable that Hochul would endorse MAID. She’s Catholic, and the Church has been a vocal opponent of similar laws. She also watched her mother die of ALS. Boal met with Hochul’s staff twice in the year leading up to her decision. While Boal refuses to claim credit, his messaging proved to be a crucial component in the bill’s decadelong fight as it reached its climax.

While a resident at the University of Minnesota, Boal made a grave medical error. Two of his patients shared a name and a diagnosis. Each had a failing heart, but one man was much sicker than the other. Boal was in his first year, bleary-eyed and exhausted; nearing the end of a 30-hour shift, he checked on his patients, scribbled on their charts, and then went home for the weekend. When he came back on Monday, he learned the sicker of the two men had died. Boal reviewed his work and discovered he had written his orders on the wrong chart. “Nobody talked about medical errors back then,” he says. “I was sure I was going to jail.”

He spiraled into paranoia, insomnia, and a prolonged depression. His calling was to save lives, and now he might have hastened someone’s death. He couldn’t get the man’s face out of his mind. Boal withdrew from his residency program, moved home to New York, and transferred to Mount Sinai. Later, he went to work in palliative care. “What was true then, which is absolutely true today, is that while the best hospice and palliative care can ameliorate so much suffering, there are some patients for whom even the very best services really can’t touch the degree of suffering that they’re experiencing,” Boal says. He describes one of his hospice patients, a young woman with metastatic pelvic cancer. Though she was on thousands of milligrams of opioids to help ease her pain, nothing was working. “She was in agony right until the very end,” Boal says. “She begged for help in passing, and there was nothing we could do. It wasn’t legal.”

One morning in 2023, Boal awoke with leg spasms. He had just been on a flight to Nepal and assumed he’d aggravated a disc somewhere in his back. He went to see his internist, who referred him to a neurologist. After all his initial scans came back normal, his doctor sent him to the ALS clinic at Columbia University. When he told Becky about his likely diagnosis, they both broke down. “I kind of felt like, that whole first month, that’s what we did; we just cried and held each other,” he says.

Boal stepped down from his job, overwhelmed by grief. Only after many months could he glimpse something like equanimity. Though he’d been raised Jewish, he had long studied Buddhist teachings, and his daily meditation practice helped him crawl out of his hole of despair. But still, Boal had cared for people with ALS. He knew what was coming. It terrified him.

He wanted to die with agency. Two nearby states had MAID laws on the books. “I knew that I would be able to get to Vermont or New Jersey and make it happen for myself,” he says. This realization gave him a sense of calm and optimism, but he understood he was in a privileged position: “I knew that the vast majority of New Yorkers wouldn’t have the connections, the resources, or they’d be too sick to go to another state.” So he joined the ongoing fight to make MAID legal in New York.

Soon Boal was taking trips to Albany to speak with legislators and writing op-eds in support of MAID. “I have this trifecta of experiences, having cared for so many people with late-stage illness, having been a health-care executive and gaining insight into what the system can and can’t do, and now having ALS,” he says. “It helps make me somebody who can engage in a dialogue with somebody who may not necessarily be on the same page as I am, and not have them walk away feeling like I was just trying to bend their thoughts to my will.”

The law Hochul signed was first introduced in 2016 by Assemblywoman Amy Paulin. Its ten-year journey to passage was grueling. “We didn’t have the votes,” Paulin says. “And we also didn’t have the institutional support.” A breakthrough came in 2024, when the New York State Bar Association’s task force on the issue released a 60-page report examining MAID’s legal implications and ultimately endorsing the bill. The New York State Nurses Association likewise signed on, as did the Medical Society of the State of New York. “One by one by one,” Paulin says, Democratic lawmakers backed the bill until they had a majority. Zero Republicans voted for it.

New York’s MAID law describes a strict process to determine eligibility. Patients must request the service both verbally and in written form, receive a mental-health evaluation, have two doctors diagnose them as having six months or less to live, and be New York State residents. Thousands of people, including Boal, wrote to Hochul urging her to sign the bill. In his letters, and in what he describes as heart-wrenching conversations with her staff, Boal never mentioned he knew Hochul’s mother had ALS for fear of being intrusive. He just told his story and the stories of people he’d cared for. On the day she announced her support, Hochul spoke movingly about her mother’s illness.

In recent weeks, Boal has kept up with his daily meditation on death, a Buddhist practice known as maranasati. “It sounds morbid, but it’s actually incredibly helpful to go through the process of imagining those last few hours and letting go of my possessions, letting go of my relationships, and wishing people well,” he says. There’s no last meal he wants to eat, no final album he wants to hear. He’s focused on the comfort of his wife and his adult children. “I want my living and my dying to involve as little trauma for them and myself as possible,” he says.

Sometimes, despite his preparations, he still has nightmares about dying. In these dreams, he’s usually locked in late-stage ALS, in pain, lacking control, unable to communicate, unable to ask anyone for help. He’s watching his family watch him suffer. But then he eventually wakes up and feels okay because he knows he’ll never have to be in that situation.