Ella Saltonstall has spent a lot of time contemplating death.
At age 16, the Kodiak resident faced the death of her father. In 2016, she lost her mom.
Now, she is one of two Compassion and Choices action team leaders operating in the state of Alaska. Compassion and Choices is a nonprofit advocacy organization supporting expanded options for end of life care, including medical aid in dying.
Saltonstall is leading a local effort to raise support in Kodiak and statewide for a medical aid in dying bill introduced by Rep. Harriet Drummond, D-Anchorage, to the Alaska House in each of the last two legislative sessions.
If passed, the bill would allow an adult patient deemed to be mentally competent but terminally ill with less than six months to live to request and receive a prescription for medication that would end that patient’s life.
In her efforts, Saltonstall has collected 70 signatures in Kodiak since September expressing support for medical aid in dying. Anticipating reintroduction of Drummond’s bill in the next session, she plans to send them to legislators early next year.
She has also asked the borough assembly to consider a resolution in support of the bill and will help man the Compassion and Choices booth at the Alaska Municipal League Conference this week.
Saltonstall’s activism began in 2014 after hearing the story of Brittany Maynard, a 29-year-old California woman who moved to Oregon after being diagnosed with terminal brain cancer in order to take advantage of the state’s medical aid in dying laws.
Saltonstall had experience with death much earlier than 2014, however.
At age 16, Saltonstall lost her father, former Kodiak Island Borough Mayor and Assembly Member Dave Herrnsteen, to cancer.
“My family and I surrounded our father … as he passed away from terminal cancer in our home on Monashka Bay Road. That experience forever shaped how I view death and one’s choices surrounding it,” she said. “Even though he left this earth too soon, I was grateful to have had that as an experience compared to what it could have been. His death was not prolonged or overly painful.”
It was a different experience in 2016 when her mother was diagnosed with terminal cancer. She died two months later after choosing not to undergo treatment.
During those two months, Saltonstall and her sister served as their mother’s caregivers. The family had discussions about what the process of dying looks and feels like, and the options afforded to those with a terminal diagnosis.
“Our mother had to spend time in her last days worrying about what kind of death we would have to witness. She didn’t want months of unbearable discomfort and progressive decline for my sister and I to watch,” Saltonstall said.
“My hope is to prevent one other person from having to spend time in their last days with their loved ones worrying unnecessarily about what kind of death they will have and how it may impact their caregivers.”
Saltonstall acknowledges it is an issue fraught with moral questions for many. Over 20 people spoke during the House Health and Social Services Committee in two hearings on the bill, with emotional and often tearful testimony on both sides of the issue.
Physicians spoke both for and against the bill, as did people facing terminal and debilitating diseases.
On one side were people like Carol Egner, whose husband, Harry Egner, died last year.
“Sometimes when Harry’s friends came to visit, he would beg them to bring a gun next time. Some of them then found it hard to keep visiting since they would not do this for him, and they felt terrible. Although Harry was blessed with caring children and grandchildren bringing joy and love to him during his darkest times, he was still trapped in a continuous nightmare for 16 months until he died on Thanksgiving morning, Nov. 24, 2016, at the age of 72,” she said.
“It is a difficult journey when one is unable to move and recovery is not happening. That last day, he was suddenly going downhill fast. His heart and organs were shutting down and he did not die comfortably, but struggled with the problem of drowning in his own fluids.”
On the other side was James Hanson, a New York resident suffering from brain cancer who was told by doctors he had four months to live three years ago. Hanson was unable to read due to his condition, so his wife, Kristin Hanson, read his statement for him.
Although living three years with terminal brain cancer has been difficult, he is glad to be alive, according to the couple’s testimony.
“If I had suicide pills with me in those dark moments, I might not be here today and you can’t undo that. You can’t unmake that decision. There’s no going back; you’re dead,” Kristin Hanson read.
“Many patients in my exact circumstances are offered lethal drugs and denied or delayed coverage for the care they need. I felt at times, as most terminal patients do, that I was a burden to my family and experienced depression at points during my illness. Tragically, those feelings are enough for people in my shoes to choose death over care. This is a very real danger when suicide becomes a social norm for people who are terminally ill.”
Those opposed to the bill questioned the protections against misuse, and some cited religious beliefs. Some said a plea to end one’s life should be taken as a sign the person is in need of psychiatric treatment.
Those in favor see it as a compassionate choice, offering peace of mind and relief from prolonged suffering.
“We hook terminally ill patients up to machines that prolong death for weeks. We have machines that can breathe, eat and urinate for people. We administer CPR on sick patients and break their ribs, burrow large IV lines into burned out veins and plunged tubes into swollen, bleeding airways. God is looking down on us and asking, ‘What are you thinking?’” Drummond said when introducing the bill in committee. “Science is not God. Medicine is here to help sick people, and when people are too sick to keep living, medicine should still be able to help people. We have stopped seeing the person and are only looking at the patient.”
Some have expressed concern about the impact the legislation may have on suicide rates in the state. Alaska has the second-highest suicide rate in the United States, according to the Centers for Disease Control and Prevention.
“I’m really disturbed that this is something we’re talking about right now is trying to increase the numbers of people dying from suicide,” said Christopher Kurka of Alaska Right to Life, a Christian political action committee that advocates against medical aid in dying.
For Saltonstall, suicide and medical aid in dying “represent opposite ends of the spectrum with regard to one’s end of life and closure,” as medical aid in dying allows a patient to tie up loose ends and die at peace.
“Suicide is when you’re choosing to end your life. When you’re giving a terminal diagnosis, that is something that is out of your hands,” she said.
Saltonstall said her goal is to open up the conversation in Kodiak and the state.
“It’s a heavy cause. It’s about death. People aren’t in general always able to talk about that,” she said. “What this is doing is opening up a conversation in our community about death.”
She welcomes anyone with questions about the movement to reach out to her at (907) 942-2166 or firstname.lastname@example.org.
Snoderly can be reached at (907)512-2624. Follow her on Twitter, @KDMjoann