Saying Goodbye to the Family, on His Own Terms

Jun 4, 2015

HARBORSIDE, Maine - The national debate over assisted suicide has gained increased attention since a 29-year-old Oregon woman with brain cancer ended her life with legally-prescribed medication last November.

Oregon, along with Washington and Vermont, have "Death with Dignity" laws, which allow physicians to prescribe medication to terminally ill patients who want to hasten death. Maine lawmakers are considering a similar proposal, but the idea is controversial.

Opponents say it legitimizes suicide and raises ethical questions. They argue that state efforts should, instead, focus on improving end-of-life care. But even in the absence of such laws, some Mainers who face a dire prognosis still choose when to end their lives. Patty Wight has the story of one family that confronted this decision.

Peter Chase knew something wasn't right. His brain wasn't working the way it used to. It was 2010. He was 59, and sometimes he felt confused. He had trouble recalling simple words, like "broom."

Chase wasn't one to go to the doctor very often. But this time, he made an appointment. And the news, says Chase's wife, Sophie Spurr, wasn't good. "It's called FTD. That's the best way to remember it. We say in our support group it's like the flowers, but not as nice."

FTD - or frontotemporal degeneration - is a form of dementia that causes cell damage to the brain, and inevitably, the person's behavior, language, or both, will deteriorate.

"Pete's was just, for a long time, was more words," Spurr says. "And then it gradually became he couldn't read, and then being able to understand what people were saying - by the end, he couldn't understand. It was like living in a country where you knew the language but couldn't remember it anymore."
 

Sophie Spurr, with a photo of her late husband, Peter Chase.
Credit Patty Wight / MPBN

Spurr and Chase were high school sweethearts who settled in the coastal village of Harborside, in a place called Horseshoe Cove. She's a lawyer, he was a boatbuilder. Daughter Rosie Chase, who now lives in Vermont, says her dad didn't have much in the way of material things, but loved his family, his boats, and the house on Horseshoe Cove. "That made him so content, and so happy, and he never wanted more than that," she says.

But as Peter Chase's disease progressed, those things that made him content started slipping from his grasp. What made it all the more painful, says Rosie Chase, was that her dad was still lucid enough to know what was happening. "As he progressed, we just all saw him struggle with it so much. And he was always so aware of how his brain wasn't working right."

Peter Chase couldn't carry on a conversation unless it was about something simple, like the weather. And Sophie Spurr says her husband's easy-going personality changed.

"It was really surreal. He had the body of my husband, who I've known for 47 years. But inside he was a different person. He was more like a four-year-old going, maybe, to a three-year-old. You know, he would get set on something, he'd need it instantly."

Last July - four years into his diagnosis - Peter Chase told his family that he wanted to end his life. In some ways, it wasn't a surprise. Throughout his life, Chase made it clear he never wanted to live in a nursing home, never wanted to live past a point where he couldn't be active and build boats.
 

Sophie Spurr with her daughter Karina Dailey in Peter Chase's workshop.
Credit Patty Wight / MPBN

His daughter, Karina Dailey, who also lives in Vermont, says, she, her mother and sister called a family meeting. "The biggest thing for us was to tell him we were supportive.  We weren't against the decision, but we wanted to be a part of it. He didn't need to hide it from us. He didn't need to do it without telling us. We wanted it a little bit more planned, and we wanted to be able to say goodbye."

Sophie Spurr says her husband wanted to be alone when he took his life. He worried about the legal ramifications for his family if they were present. But Sophie, an attorney, was more concerned about how, where, and when he would do it, and whether she would be able to say goodbye.

Eight months passed. On a snowy day in March, Spurr was driving home after skiing in western Maine with her daughter Karina and her family. "He called me or I called him - I can't remember which - and he said, 'Soph, I'm going to do it.' And I said, 'OK.' "

Spurr told him she'd be home as quickly as she could. In the meantime, Peter Chase called his daughters. He spoke to Karina first. "He said, 'I finished my last boat. I can't read to your kids anymore. I just don't want to sit in a chair for the rest of my life, and more and more that's what I'm doing. It's just so hard for me.' He was breaking down crying, as was I."

He couldn't reach Rosie at first, but left her messages. By this point in his disease, it was easier for him to refer to himself by his full name. "Hi Rosie, it's Peter Chase," he said. "I'm about to die and I just wanted to say goodbye to you."

Rosie was ultimately able to speak to her dad one last time. He told her he loved her and to tickle her kids. "The other thing that he said that I'll never forget is, 'I just need to get this done. It's something I just need to get done.' "

It was mid-afternoon when Sophie Spurr pulled into their driveway. As he saw her car arrive, Chase stood at the kitchen sink and held a glass to his mouth. It had 90 opioids he had saved from past knee surgeries, and 40 sleeping pills, crushed into a watery mix. By the time Spurr walked in the door, the contents of the glass were gone.  She poured a glass of Irish whiskey to share as they sat in their living room. "We got to tell each other how much we loved each other, and how much fun we'd had together."

Within five minutes, he was unconscious. Their daughters arrived at the house later that evening. The family camped out on the floor around their husband and father - midwives, as Karina Dailey describes it, holding him for death.

"It's beautiful in its own way," she says. "I was hugging him and touching him. I was comfortable with watching his body, holding his pulse, rubbing his head, putting moist water or whiskey on his lips."

But Rosie Chase says it was also disconcerting at times. "It wasn't perfect. Things happened as he was dying that were hard to watch and to experience, and there were moments where we thought, if only we could call a doctor."

The process took far longer than the family expected. It was 9:00 the next morning, March 16, when Peter Chase stopped breathing. His wife says the pain of him being gone is still raw, but "the remainder of his life, I think, would have been pretty miserable. You know, it's sort of like being in solitary confinement or something."

The law proposed in Maine would allow a physician to prescribe medication - to be self-administered - that would hasten death after a terminally-ill patient has requested it on three separate occasions.

As for the family of Peter Chase, they say his decision isn't right for everyone, but was the right one for him - to die, on his own terms, surrounded by his family, in his home on Horseshoe Cove.