NORTHAMPTON — Death is rarely planned, but Dan Winter knew he wanted to not only plan his death, but also share the story of it.

Winter, 62, had been diagnosed with early-onset Alzheimer’s, and after watching his father die slowly from the same illness over 13 years, he decided that he wanted to take steps to shorten his life. Over the course of nine months, Dr. Lewis Cohen interviewed Winter as he planned the end of his life, and ultimately wrote a book about Winter’s story and end-of-life choices.

“He was a spokesperson on a webcast for encouraging people to complete advance directives if they had dementia. I heard him speak, and my ears kind of twitched, and I thought to myself, there is more to this story than what he’s publicly saying at this moment,” said Cohen, a professor emeritus of psychiatry at Tufts University School of Medicine and a former clinician-researcher at Baystate Medical Center. “I reached out, contacted him, and lo and behold, there was more to the story, and he wanted it told.”

Winter, who was from Kansas, but living in Portland, Oregon, had been diagnosed with early-onset Alzheimer’s four years earlier, and for nine months, Cohen interviewed him and his husband every few weeks, following him as he made the decision to voluntarily die.

He has continued to interview Winter’s widower, John Forsgren, every six weeks since Winter’s death. Cohen’s book, “Winter’s End: Dementia and Dying Well,” explores Winter’s story and the complicated issues with physician-assisted death and end-of-life choices.

Cohen will give a talk and host a discussion on the book and palliative care at the Coolidge Museum at Forbes Library in Northampton on Tuesday at 6:30 p.m. He’ll be joined by Dr. Jeffrey Zesiger, a palliative care specialist and hospice medical director at the Fisher Home in Amherst.

“Dan suffered as he felt himself dwindling, as he became less able to connect with the large family that he loved, large community that he loved,” Cohen said. “He became less able to do things, and it reached the point for him where he began to get lost. For him, that was the soul killer, that he would have to be entirely dependent upon others to even go with him to walk his dog.”

Like Winter, Cohen’s father also had dementia and was unable to speak toward the end of his life. Writing this book gave Cohen a chance to rethink his relationship with his father, and better understand his experience.

Dementia is not included in illnesses that qualify for medical aid in dying under the Oregon Death with Dignity Act. In the United States, states with laws that permit medical aid in dying necessitate that a person be within six months of death to take life-ending medication. With dementia, patients usually do not have that diagnosis, and therefore are not eligible for physician-assisted death.

However, there are legal ways for people to end their life or prevent lifesaving measures under these circumstances, including advance directives, a legal document that provides instructions for medical care if a person cannot communicate their own wishes, and voluntarily stopping eating and drinking (VSED), the route Winter chose.

Zesiger has experience with this kind of case.

“We have people who, like Dan Winter, had made the same decision. They would rather give up a little bit of their life where they might have some good left, but the bad is getting worse and worse, to take advantage of their clarity of thinking and their determination to stop eating and drinking when they’re still in the mild stage of dementia,” Zesiger said.

Massachusetts law

Massachusetts does not currently have a law allowing for medical aid in dying. Currently, 10 states and the District of Columbia have legislation that permit physician-assisted death with varying requirements. Northampton state Sen. Jo Comerford has sponsored legislation to allow for a similar act in Massachusetts. The current bill, S.1331: An Act Relative to End of Life Options, was introduced in February 2023, and most recently referred to the committee on Senate Ways and Means in April 2024.

“I wasn’t in favor of this idea of medical aid in dying originally, but I started to meet patients that said, ‘I’m suffering a lot, and your hospice is helping me, but not helping me enough. I’m still suffering. You’re controlling my pain, my anxiety, but I just don’t want my life to keep going. It’s a lot of burden and it’s not a lot of benefit,” Zesiger said.

Zesiger said the Massachusetts bill is strict, with many levels of protection built in, and he thinks the bill is good overall. Cohen said he wishes the bill would go further in who it includes and he feels it is somewhat excessive in the number of steps required.

Under the proposed legislation, modeled on the Oregon law, patients would need a six-month prognosis confirmed by two doctors (age or disability are not included); they must make two requests for the medication, with a waiting period and witnesses, one of whom is not a relative; and mental capacity must be confirmed by a licensed mental health specialist.

“I’d love for Massachusetts to pass a bill, but one that was not following the rubber stamp of Oregon, but in fact was perhaps looking more toward Europe and some of the things that are offered there,” Cohen said.

He mentioned that in Switzerland, the Netherlands and Belgium, dementia is a valid reason to request medical aid in dying.

“My take is it all comes down to choice, and it all comes down to personal experience of what suffering constitutes and what unbearable suffering constitutes.”

Autonomy, control

The issue of medical aid in dying and the choice to die is one of autonomy and control for many people. As Dan Winter was planning his death, family objections were one of the biggest roadblocks he faced. Winter came from a conservative, Catholic family in Kansas, and as he planned his death and tried to have open conversations with them, many of them did not support his decision. After Winter set a date for his death, family members called the police to do a wellness check and sent people from suicide prevention organizations.

Winter wanted his story to be told, and when Cohen faced ethical questions as a writer, like covering this pushback from his family, both Winter and his husband insisted that he write about it, saying it was unfortunate, but also a normal thing that would happen with a large family.

Winter had been executive director of the American Civil Liberties Union of Kansas and Western Missouri, and was a champion of LGBTQ and civil rights issues. For him, this was one more cause he wanted to support.

Though Winter had originally planned to die by overdosing on medication, he ultimately decided to end his life by voluntarily stopping eating and drinking. Cohen and Zesiger said that VSED typically takes around two weeks, and ultimately people slip into a coma and die from dehydration. It is not painful, though there can be uncomfortable symptoms to manage, like a dry mouth.

Cohen has written two other books on end-of-life issues. For “Winter’s End,” he did two years of basic research before meeting Winter, and then another four years of work following that.

“Winter’s End” combines Winter’s story with the expert testimony of more than 100 palliative medicine practitioners, legal scholars, bioethicists, social workers, nurses, neurologists and other authorities. Cohen began writing this book around his retirement at age 70, and it gave him the opportunity to reach out to many people he knew and had worked with before and reconnect with them.

“[Dan] was really about wanting people to have a full choice and to be accepting of all of these different options that were available, and they wanted people to talk about it and talk about it with their family, with their friends, and with the medical staff who take care of them,” said Cohen. “It’s opening one more option to these people who are suffering. And one of the things that I really learned  from Dan over and over again is how people with dementia can suffer.”