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Life after 'Death with Dignity' in Maine

One year after Erik Carlson, a terminally ill brain cancer patient, chose to end his life using this Maine law, we revisit his family to see how they feel now.

EDGECOMB, Maine — Editor's note: The above video aired Dec. 3, 2020.

In September 2019, Maine became the ninth state to enact a Death with Dignity law. There are now 11, and similar laws are being debated in several other states, including New York and Massachusetts.

Last year, 30 terminally ill people in Maine chose to end their lives before their disease could because of this law. Erik Carlson was one of them.

NEWS CENTER Maine told his story a year ago, as the date he had set drew near and as his inoperable brain cancer chipped away at his ability to function.

"I don't just want days. I want to be me and do the things I want to do, and it's very clear that that train is leaving the station," Carlson said eight days before he died in October 2020.

At that point, he had already begun the process, which at that point, consisted of a series of exams, forms, formal requests, and waiting periods. It is a process that cannot begin until the patient has been given six months or less to live.  

For Carlson, that came after his second brain surgery for glioblastoma, a particularly invasive brain cancer for which there is no cure. He asked his doctors about Death with Dignity. They couldn't recommend it. 

After serious thought, he told them he wanted to proceed, and they said they would support his decision. The series of steps included verifying he was a resident of Maine, had a terminal disease, was of sound mind, and was making a voluntary and informed decision.  

He had to get confirmation of his diagnosis from a second physician, and then make a second verbal request after waiting at least 15 days from the first, along with putting a request in writing.

There is another waiting period built into the law. Forty-eight hours must pass between the time the physician prescribes the lethal medication and the time the pharmacist can fill it. The patient is told repeatedly they can change their mind at any time, even after they have the prescription in hand.  

If they proceed, they must drink the liquid unassisted, though they are advised they should have someone present. They are encouraged to enroll in hospice and use their end-of-life services. The patients are also assured that the law protects their insurance policies.

Carlson had made up his mind. He went through all the steps with his partner, Stephanie McSherry, and his sister, Lindsay Menough, by his side. They were supportive of his decision, as were Carlson's two daughters, the younger just 17. 

NEWS CENTER Maine spoke with them just before Carlson ended his life on his 50th birthday. NEWS CENTER Maine went back to his home in Edgecomb last month to see how they feel about this law now, a year after Carlson chose to use it.

McSherry said she hasn't doubted Carlson's decision to end his life before his brain cancer robbed him of his independence and dignity. It made her grieving process easier.  

"The trauma of watching him deteriorate any further would have been devastating," she said.

That is not to say the process was not heartbreaking in its own way. 

"Heartbreaking, but beautiful," she said.

Carlson fought hard for a year and a half. After his second brain surgery, his doctors leveled with him. 

"They told him six months to live. They said, 'You're going to be in a wheelchair, incontinent, with us feeding him.' He said, 'No thank you. That's not for me,'" Carlson's mother, Ruth Carlson Eames, said.

McSherry, Eames, Menough, and Carlson's daughters were among his inner circle, the people with whom Carlson chose to spend his last day. The lifelong forester went out in his beloved woods for one last ride. 

"That night had a fire … everybody he wanted here was here," Ruth said.

They laughed and talked and said goodbye. 

"The lessons he gave me last hours ... Words of wisdom, hopes, and dreams he had for us. I'm so thankful we had that sense of closure," Erik's younger daughter Amelia said.

Erik said goodbye to each of them and went to his room to take a legally prescribed medication that would stop his heart.

That was on his 50th birthday, a date he set. So what was it like for his loved ones when the clock was ticking down?

"Erik said we were going with the flow, and we were trying to live a normal life knowing his death was coming. It was very strange," his sister Lindsay Menough said.

Amelia admitted the countdown sent her into a bit of a panic. She wanted to spend every minute with him which was not possible.

"Every second lost broke my heart a little. That was the hardest part," she said.

"It gives you a heightened sense of appreciating the moments that you have," McSherry said.

They all agree that the second in the mandated two-week waiting period was difficult for Erik. McSherry said he was frustrated. His mother said he would not change his mind, so they all wondered what they were waiting for. 

During that time, Erik's condition grew worse. The family would like to see the waiting period in Maine shortened as California has done for patients in hospice. By the end of the waiting period, his bodily functions rapidly deteriorated, and Erik had difficulty swallowing. He did not get down the total dose of medication. He was unconscious but it took him longer than the typical four hours to pass away. 

"It was all overnight," Menough said.

By the time he passed, she said they were all emotionally drained.

There is also a stigma that comes with making this choice. Val Lovelace of Maine Death with Dignity said stigma is still an issue, even among the doctors who participate in the program. Some who support the choice are hesitant to let their peers know how they feel, he said. Patients and their families also feel that fear of how they'll be perceived.

"He was worried that we'd be disappointed or feel that he was abandoning us. I was like, 'No, you're an adult and no one should have to live like this,'" Erik's daughter Isabel said.

Amelia said she had fielded some uncomfortable questions from people who didn't understand what they were up against.

"I had a few people ask why he would do that to me. It's not about me," she said. "He's in serious pain — terminally ill — he can make this decision for himself. It's not about me, my sister, or my family. It's about him."

Erik did not want a funeral, but rather a celebration of life. Family and friends celebrated his zest, humor, and Nordic heritage this summer. His daughters told funny stories because they have so many. 

"We'd much rather talk about the ridiculous things he said and share his funny stories than dwell on his absence," Isabel said.

McSherry said the celebration was quite joyful and that Erik, who said no one should cry, would have loved it. 

A whole year later, they all said they were grateful that Erik had a choice.

"I think that was an honor to be here with him and to walk this journey with him," Menough said.


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