'Death with Dignity': One Family's Story

By Adam Reilly

April 10, 2012

johnson family

The Johnson family. Heather Clish is on the lower left with her son. (Courtesy of Heather Clish)

READING, Mass. — This fall, Massachusetts voters will likely be asked to weigh in on the so-called Death with Dignity Act, which would allow terminally ill patients to take their own lives. As debate over the proposal heats up, one Reading woman has a unique perspective. Heather Clish’s father was treated for cancer in Massachusetts but died in Oregon, where he ended his life using a similar law. Clish shared her family's story with Greater Boston.

Realizing something was wrong
Lee and Mary Lou Johnson were on their way from Oregon to Europe for a cruise down the Danube when they stopped in Boston to visit their daughter and her family. Right away, Clish knew that her father wasn’t well. He seemed foggy; he would try to sit in a chair and miss the seat; he would walk upstairs when he meant to walk down.
"So something was telling us, this is very wrong," she said.
Johnson went to the emergency room at Mass General where he was diagnosed with glioblastoma, reportedly the same kind of cancer that killed Ted Kennedy. Johnson’s prognosis may have been even worse: the cancer had crossed both hemispheres of the brain, and doctors said it was inoperable.
So Johnson was treated with radiation and chemotherapy — but he was already planning his next move.
"We were in the hospital when he first did say, 'We’ve got to get to back to Oregon so I have access to this Oregon option,'” Clish said.

The opportunity for an assisted exit
The “Oregon option” is an act that allows adults who’ve been diagnosed with a terminal illness to obtain medication they can use to end their life. Johnson returned to Oregon in late December.
"He knew he wanted to go about dying with grace. How would he treat people, how would he spend his time," Clish said. "And interwoven with all of that was … trying to figure out for himself, what was that line? What was living and dying with dignity?"
When her father’s condition worsened Clish flew out to be with him. The next day, he announced he was ready to die.
"I had just given him a drink of water," she recalled. "He took the drink of water, he lay back, and he said, 'Okay, I’m ready to go.' I said, 'Dad, no, that wasn’t that drink.' And he said, 'Well, it’s time to get that drink.'”
Clish didn't want the burden of interpreting his request. She asked what he meant, "and he told me clearly that was ready to take the mix, take the drugs."
The plan, and what happened

After triple-checking Johnson's intentions, the family contacted the end-of-life group Compassion & Choices. A volunteer came to the house and prepared a lethal dose of the drug Seconal while Johnson and his family said goodbye.
"We sat in the den where the bed was and we just talked. It was actually strangely nice," Clish said. Johnson talked about where he was from, in Utah — even some stories the family had never known. "He was funny even at the end. His last thing that he wanted to eat was a piece of toast with raspberry jam, because he loved raspberry jam, and he just completely enjoyed it."
A few minutes later, Johnson reached for the cup. He drank the contents down.
"It was very fast. I would say within minutes he appeared to have fallen asleep," Clish said. In fact, he had slipped into a coma, where he remained for about 10 or 15 minutes until his pulse stopped.
"The volunteer was very discreet," Clish added. "She was in another room, and she was the one who came, checked [his] pulse and told us when he had gone. It was very peaceful."
Critics argue that for the terminally ill, hospice care is enough. Clish admitted that end-of-life suicide isn’t right for everybody. "But for someone like my dad, it was right," she said. "When he died, my mom was in his arms…. He one hope was that when he died he would know who she was and that she loved him. So it was planned — it was planned and it worked out that way."
> > READ: The proposed Massachusetts initiative (pdf)
> > READ: A summary of the petition from the Attorney General's office (pdf)

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