Kingfield philosopher seeks medical aid in dying

Karen Warren
Retired Macalester philosophy professor Karen Warren plays with her 15-year-old cat, Colfax, in her Kingfield home. Warren was diagnosed with Multiple System Atrophy, a terminal neurodegenerative disorder, in 2015, and has become a public advocate of medical aid in dying. Photo by Bill Klotz

When philosopher Karen Warren started teaching in 1978, she would devote a unit of her ethics class to euthanasia.

“I started thinking very early on about whether there’s such a thing as rational suicide, whether people have a right to die,” said Warren, who has lived in the Kingfield neighborhood for the past two decades.

Some of her ethics students, she said, would argue that it was always morally wrong to kill yourself. She would challenge their beliefs with probing questions.

“What if you’re a CIA agent who’s taken an oath to die — to kill yourself — rather than reveal your country’s secrets?” she’d ask. “What about Buddhist monks who set themselves on fire to protest unjust regimes — have they done something wrong? They’re monks!”

The goal, she recalled, was to make students think for themselves and see how it may be “problematic to say the right to life is absolute.” If Warren’s students asked her what she believed herself, she would reply: “That’s irrelevant; my job is to develop your view.”

Today, Warren is reticent no longer.

In 2015, she was diagnosed with a terminal neurodegenerative disorder called Multiple System Atrophy (MSA), which will eventually leave her paralyzed and unable to talk, walk or swallow.

The diagnosis has radically changed her outlook on life. She said her perspective has “deepened” from academic expertise to lived experience, and she has turned her orderly intellect away from philosophical research and toward the uncertain work of political activism.

“It became obvious to me that the one thing I could do as a philosopher and teacher was I can do a three-minute speech,” she said. “Before I got the illness, I don’t think I understood my role in life or why I was here.”

Medically assisted dying

Warren said she has found motivation to stay alive by fighting for the right of others to die.

“Permit us the peace of mind that comes from knowing that we can decide when enough is enough,” Warren told Minnesota lawmakers in 2017, in a speech urging the Legislature to pass the End-of-Life Option Act.

The bill would let mentally sound people with a terminal illness end their lives by drinking a fatal cocktail of barbiturates — provided they have less than six months to live, can prepare the beverage themselves, receive the approval of two doctors and state in writing that they understand the risks and alternatives.

Medically assisted dying is now legal in Oregon, Washington, California, Vermont, Colorado, Montana, Hawaii and the District of Columbia, and has been signed into law in New Jersey.

In Oregon, where a “Death with Dignity Act” passed into law by citizen initiative in 1997, more than 2,200 people have been prescribed lethal drugs and about two-thirds have chosen to ingest the narcotics.

Sen. Chris Eaton, a Democrat from Brooklyn Center who introduced the Minnesota bill, said many people who receive prescriptions are comforted by having the option to die, even if they never choose to take the drugs.

“It’s not like people’s instincts are to get this medication to die as soon as possible,” she said. “It’s often six months or longer before people take it.”

Reports from the Oregon and Washington departments of health show that most people ask for medical aid in dying out of concern for losing autonomy, dignity and enjoyment of life. People with rare neurological diseases like MSA or ALS are the patients most likely to request a prescription, experts say.

Medical aid in dying is supported by 73% of Minnesotans, according to a 2016 poll. The Minnesota Medical Association ended its opposition to aid-in-dying legislation in 2017. Eaton said the Democratic caucus increasingly supports it, though her bill did not receive a hearing in either legislative body this session and is unlikely to come to a vote while Republicans control the Senate.

“I think it could pass in the House right now, and when we get the majority back in the Senate, it will pass here,” Eaton said.

Sen. Scott Dibble (District 61), who has co-sponsored the legislation, said choosing to die is an “intensely personal decision.”

“People inherently understand that this is the kind of decision that should be reserved for themselves and their doctors and their conscience and their faith tradition,” he said.

Karen Warren
“All I want to do is die comfortably,” Karen Warren says. Photo by Bill Klotz

‘The worst form of neglect’

Some of the most vocal opponents to medical aid in dying legislation in Minnesota include the Catholic Church and the Kingfield-based anti-abortion group Minnesota Citizens Concerned for Life, which reject what they call “assisted suicide laws” on the grounds that they target people with disabilities, could increase overall suicide rates and violate principles of “human dignity and equality.”

The Minnesota Catholic Conference characterizes people who seek to end their own life as being “vulnerable” and in need of “care and protection.”

“To offer them lethal drugs to commit suicide is a victory not for freedom, but for the worst form of neglect,” the Church’s website reads.

Kirk Allison, a former director of the Program in Human Rights and Health at the University of Minnesota, said he opposes right-to-die laws on principle.

“People are starting to internalize the idea that you’re a burden if you’re terminally ill,” he said. “I think that’s a very bad development from a social and cultural point of view.”

Allison also has more pragmatic objections to the Minnesota bill. He said referrals to mental health professionals should be mandatory, not up to doctors’ discretion. He thinks the bill does not require enough data to be kept on patients to detect patterns of abuse. And he feels it would force doctors to “falsify” death certificates by listing the cause of death as the disease patients were diagnosed with, rather than the drug they took that killed them. “It makes accountability and traceability nearly impossible,” he said.

As a physician, Allison said he finds problematic the role that “social drivers” play in the push for right-to-die legislation.

“The people who seem most interested in this are those who have higher education, they tend to have means, they tend to be somewhat secular and tend to be worried about autonomy above all,” he said. “The attitude that ‘it’s just my autonomy, it only has to do with me, it’s my choice, it’s my life, it’s my death, it’s my dignity’ is really narrowing the scope of consideration in terms of what makes for good public policy.”

Clergy for compassion

Linden Hills resident Rebecca Thoman, who runs the Minnesota operation of the nonprofit Compassion & Choices, said that the conversation about medical aid in dying is evolving thanks in large part to advocates like Karen Warren.

“There’s nobody as passionate about this issue as people who are either staring in the face of some nasty disease or have had a loved one who they have watched die miserably,” Thoman said. “I think it really gives them meaning about how they’re spending their life at the end.”

Every month for the past four years, a group of eight Minneapolis clergy have met in the Rev. David Breeden’s office at the First Unitarian Society in Lowry Hill to further the mission of Compassion & Choices, plan speeches and promote medical aid in dying legislation in Minnesota. Among the group’s members are Eliot Howard, pastor of the Linden Hills Congregational United Church of Christ, and Rabbi Michael Latz, of Shir Tikvah.

“It may be the only organization like this in the nation,” Breeden said. “The No. 1 objection to medical aid in dying is religious, but we’re in the religion business, basically, and we’re out here saying we think this is a good idea.”

The Rev. Margaret McCray, a Fulton resident and Presbyterian minister, said she got involved in the group because she doesn’t “believe that God ordains how we die.”

“I don’t think you can force a religious belief on anybody or legislate a religious belief and say you cannot take your own life,” she said. “Religion doesn’t dictate how and when compassion can be offered.”

An ‘ethic of care’

Shortly after her diagnosis, Warren joined an MSA support group in Golden Valley, where she met a woman named Patricia Sturcken, who had been diagnosed with MSA in 2009.

Sturcken sat in a wheelchair and breathed, fed and urinated through tubes. Severe hand spasms caused her fingernails to cut through her palms. The disease had killed off the lining of her nerve cells, causing painful cramping.

“Karen felt it was no way to live,” Sturcken’s daughter, Jean Wayne, said. “My mom was trapped in her body for years, couldn’t speak, could barely move, could only blink her eyes and move side to side.”

Warren became friendly with Sturcken, who communicated with the world through eye movements tracked via computer before she died last November.

“I realized early on that she was inside there,” Warren said. “She was writing a novel about heirs to the British throne, in which all the heirs had been killed off, and Pat was going to be the heir who took over.”

Yet Warren knew she never wanted her family to see her like Sturcken.

“We were all dying but it wasn’t obvious — with Pat, it was obvious,” Warren said. “I thought, ‘Wow, that’s what I’m going to look like. I never want to get this far.’”

During her 28-year career as a Macalester College philosophy professor, Warren developed what she called an “ethic of care.”

“The bottom line of any ethic is it has to be based in care, not in rights, not in rules, not in self-interest, not in God’s will, but in care,” she said.

Avoiding pain and suffering is not her primary motivation. She thinks the strongest argument for medical aid in dying stems from the transcendental philosophy of Immanuel Kant, who said that being human comes down to rationality, dignity and autonomy.

“What does rationality mean? It means you’re capable of living in accordance with principles you accept,” Warren said. “What is autonomy? You’re capable of self-administering, self-regulating. What is dignity? It’s not being treated as an object — being treated as a person, having intrinsic worth.”

For now, Warren, 71, has no desire to die.

She does deep breathing with a respirator eight times a day, spends 12 hours a week on physical therapy exercises and treats her pain with medical cannabis and Tylenol. She enjoys curling up on the couch with her 15-year-old Siamese cat, Colfax, and she has ordered her two grandchildren bike helmets to prepare for their upcoming visit from Santa Barbara. Her relationships with her siblings have never been better.

“Sometimes I wake up and I’m happier than I’ve ever been,” she said.

Yet when she thinks about the future, Warren knows a point will come when she’s ready to end her life: “As soon as I can’t interact with people, when relationships no longer matter to me, when I don’t care — then it’s time to go.”

And she knows how she wishes it would happen: “I’d say to the doctor, ‘I’m ready.’ They’d have the family come in. ‘Are you ready? Are you ready? Are you ready?’ I’d say. ‘Okay, let’s do it.’”

In the meantime, Warren said, it would be a “tremendous relief” to know the choice to die is hers alone to make.

“It’s hard work to let yourself die,” she said. “To deny us this option is to not honor our humanness.”