New book ‘Winter’s End’ chronicles dementia and end of life choice

Produced and written by Andrea Brody

“Many more people seek to just be comfortable, and as long as they are alive with their illness they're satisfied with getting good support through hospice. But there are people that say that's not good enough. I want to accelerate my dying.” Graphics by Rommel Alcantara/KCRW

End-of-life decisions are complex and deeply personal. Many of us can expect to live well into our 80s and 90s, perhaps even longer, thanks to modern medicine and advances in healthcare.  While a long life is something that many aspire to, conversations about how or when we’ll die are rarely given the same attention. For some, the topic remains deeply uncomfortable — even taboo. 

For Dan Winter, this issue came up sooner than he would have liked. After watching his father struggle with Alzheimer's, Dan was diagnosed with early-onset dementia 10 years later.  

His story is chronicled in Winter’s End: Dementia and Dying Well, a book by Lewis Cohen — psychiatrist and dementia researcher at Tufts University School of Medicine.  Cohen explores Dan’s early diagnosis, the impact of seeing his father suffer from the disease, and his unwavering decision to have full autonomy over his life and death.“Right from the beginning, when I started to speak with him,” Cohen tells us, “this was a man who was very upfront that he had come to the decision he was going to shorten his life. When he was going to do that [and] how he was going to do that, wasn't clear.” 

Jeff Zesiger is a hospice and palliative specialist in Springfield, Massachusetts. He’s also a board member of the Massachusetts Death with Dignity Committee. For further insight into the complex issue, Zesiger offers this: 

“We find ourselves outliving our minds or our bodies with current medicine. When [that happens] you might be in a place you really didn't want to go. The challenge facing those with dementia and Alzheimer’s is that you have more than six months to live. It's an arbitrary amount of time that the US has decided is ‘end of life.’ If you're facing dementia, you can't rely on medical aid in dying because the definition of that [prognosis] is six months or less.”

Dan’s husband John Forsgren poignantly reveals details about Dan’s deterioration, and Dan’s certainty and uncompromising approach to life’s final chapter. 

“He had wanted very badly to see his grandchildren, if his kids did have children,” Forsgren shares. “He looked forward to being a grandfather. He looked forward to seeing his kids become accomplished, become full fledged adults. And I know he wanted more time with me, but none of those things added up to enough for him to risk living without his humanity.” 

Forsgren adds that it was Dan’s wish to have Cohen share his story and advocate for great patient autonomy.  

“People need to know that someone who is considering ending their own life as a result of dementia is not necessarily experiencing any despair whatsoever, but simply recognizing that they do not want their body to live without their mind being equally present.”

“Dan's hope was that, by talking to Lou about this and having this book come out, that it might open the door to more people asking the question about ‘what are the options at the end of my life?’ If they choose to let the disease take its course, more power to them. If they have considered this option and decided it's the option for them, I wish them well.”


Daniel Patrick Winter.  Photo by David Lisak, founder of The Bristlecone Project, the 1 in 6 Project which refers to the percentage of men who are sexually abused as children. 

Credits

Guests:

  • Lewis Cohen - Author; psychiatrist; dementia researcher, Tufts University School of Medicine in Springfield, Massachusetts
  • Jeff Zesiger - Hospice & palliative specialist; board member, Massachusetts Death with Dignity Committee.

Producer:

Andrea Brody