SEE FOR YOURSELF Advance care planning open houses to help people start, revise or complete their Minnesota advance Directives grew out of earlier efforts as Northfield Advance Care Planning Advisory Council (NACPAC). The next event is Thursday, March 21 from 6:15-7:45 p.m. at the Northfield Public Library. 98cebabb-8d24-4b76-9fb9-51668b9cd856
For Dundas resident Julianne Donaldson, thinking about the most compassionate way for a human life to end was not the way her husband Don died.
Donaldson, a hospice volunteer, called the five-month period from diagnosis until her husband’s death from esophageal and stomach cancer in 2016 “truly terrible.”
“We tried everything,” she said. “It was painful physically, emotionally, spiritually.” She said she was so worried that he would try to take his own life that she made him promise he would never do that.
One day, when a social worker and a hospice nurse were visiting their townhouse, Don walked down to the basement where his gun was stored, ready to kill himself. The couple had already lost a 19-year old grandson to suicide. Julieanne confronted him by asking what had changed between when he had given her his word that he wouldn’t commit suicide and that moment?
“He told me he had no idea that dying was going to be so hard,” she said. “He didn’t want to be the reason why everybody in the family was always crying. He had so much anxiety.”
Don Donaldson died about 10 days later.
A new outlook
Since that day, Julianne Donaldson said she’s been talking with friends and family and advocating for those with terminal medical diagnosis the right to retain autonomy over their bodies. She’s also involved with national end of life advocacy organization Compassion & Choices, as well as the Northfield Aid in Dying Education Group.
The PBS film with Diane Rehm, “When My Time Comes,” has been screened numerous times to community members at FiftyNorth and the Northfield Public Library, and several advance care planning open houses have been held.
These free events have been sponsored by Northfield Aid in Dying Education Group, whose ranks continue to grow, as the debate over end of life practices intensifies across the state.
Mary Carlsen is a vocal member of the group who said she believes strongly in educating as many community members as possible on the sensitive subject.
“This is a non-partisan issue that comes down to a faith perspective and individual views,” said Carlsen.
Carlsen, professor emeritus of social work and family studies at St. Olaf College, has done a lot of research about medical aid in dying (MAID).
“Physician assisted death is a medical practice that is available in 10 states and the District of Columbia,” she writes. “It is currently not allowed in Minnesota but is under consideration in the 2024 Legislature. House File (HF)1930 and Senate File (SF)1813 have been introduced as the Minnesota End of Life Option Act by Representative Freiberg and Senator Morrison.”
Statistics and language
Carlsen said that to access medical aid in dying, a person must be 18 years or older, have a terminal condition that is certified by two medical professionals to result in death within six months, have the capacity to make and communicate this decision, and possess the ability to self-ingest medication.
About 20% of the population in the United States live in jurisdictions that allow medical aid in dying: Oregon, Washington, Montana, Vermont, California, Colorado, Washington D.C., Hawaii, New Jersey, Maine and New Mexico. State laws are fashioned after the original law in Oregon (passed in 1997), the Oregon Death with Dignity Act and are fairly consistent across jurisdictions.
“As is true with many social and political issues that touch on deeply held beliefs, use of language is important in discussion of this policy,” said Carlsen. “Early proponents used physician assisted suicide, and death with dignity phrases — the early Minnesota legislation was called the Compassionate Care Act.
The language of end of life option respects that this is not the only way to die with dignity or receive compassionate care during a time of terminal suffering; it is an option. Opponents continue to use physician assisted suicide or even euthanasia to refer to this option.”
Carlsen explains that medical aid in dying differs from suicide in several significant ways: those who die by suicide often do it impulsively, in secret, violently and when their distress has them feeling helpless and hopeless. They have the option to live, yet choose death. Those who elect to use medical aid in dying are actively dying and choose to decide when death comes, in the presence of loved ones, peacefully. They would rather live, but don’t have that choice; they are dying.
Opponents and proponents
Supporters of this end of life option focus on the idea of autonomy and choice at end of life, among many other reasons to support this legislation. People currently make decisions to voluntarily stop eating and drinking (VSED, legal in every state), request pain medication to induce palliative sedation, and refuse or stop medications//treatments to prolong life.
The option to request medication to hasten death that is occurring is another option for people to have control over when and how they die. Laws governing this medical practice explicitly state that MAID is not suicide, euthanasia, homicide, or murder. It is entirely voluntary — no patient, no medical professional, no pharmacist, no hospital or other care facility is required to participate and safeguards against would-be abuse are clear. The Minnesota Medical Association assessment is that the “current legislative proposal, authored by Rep. Mike Freiberg and Sen. Kelly Morrison MD, meets the core safeguards defined in MMA policy.”
Those who oppose medical aid in dying focus on two primary concerns, although there are others: the belief in life from conception to natural death and fears of a slippery slope that will threaten the lives of people with disabilities and elders. Many opponents tend to hold that only God can determine the day of death, and that safeguards built into the law will not prevent coercion and movement toward euthanasia (where another person administers a medication to end life).
In a variety of polls, a majority of Minnesotans and Americans support this right for a terminally ill adult with decision-making capacity and the ability to self-ingest to request and receive medication to hasten death. People’s opinions are informed by religious belief, political ideas, and personal experiences with death. Healthy public discussion of this issue is important and a reason legislatures across the country are bringing the issue forward.
As of this writing, Sen. Bill Lieske, R-Lonsdale, opposes this bill (he has written about this in an earlier edition of the News). He serves on the Senate Health and Human Services Committee that would be the first to hear the bill if a hearing is scheduled in the Senate. Rep. Kristi Pursell, DFL-Northfield, has signed on to the bill as a supporter.
Viewers can listen and watch the testimony at hearings at the Minnesota Legislature website .
For those like Donaldson who have lived through their own personal drama, any move forward on this sensitive topic is welcome.
“I feel relief every time I tell my story,” said Donaldson. “It gives me hope that Physician Aid in Dying is something that might be achieved at a legislative level.”
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