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Spokane, Washington  Est. May 19, 1883

Will terminally ill patients in Minnesota be allowed to choose when life ends?

By Reid Forgrave and Briana Bierschbach Star Tribune

MINNEAPOLIS – Ellen Kennedy’s house in Edina is packed with memories of more than three decades with her late husband, Leigh Lawton.

They visited nearly 50 countries together, some for work – she the founder of the human rights organization World Without Genocide, he a business professor at the University of St. Thomas – and some for fun. Near the front door is a samovar from Ukraine. There’s a whirling dervish from Turkey, puppets from Thailand, paintings from China and Israel and Egypt.

“People say, ‘Oh, you had a wonderful life together! You had so many memories!’ ” Kennedy said. “But at this point I can’t get beyond the images from the end. … I am haunted.”

Before his death from cancer in December at 78, Lawton asked his wife to promise to advocate for a law in Minnesota to legalize medical aid in dying. DFL legislators plan to introduce legislation next session that would allow physicians to dispense a life-ending medication to terminally ill patients with less than six months to live; the patients would need to ingest it themselves.

Kennedy hopes to tell her story during legislative testimony: For more than three years, her husband fought hard to live as he struggled with advanced multiple myeloma, an incurable blood cancer. Lawton was hospitalized 17 times. He spent hundreds of days at Mayo Clinic in Rochester, Minnesota. He had a stem-cell transplant and five types of chemotherapy; nothing worked. As his bones weakened, his body buckled into itself. He shrank 6 inches from his 6-foot frame. Surgeons injected cement into his bones to strengthen them.

His body withered to the point he couldn’t participate in an experimental drug trial. Then, in November 2022, Lawton decided he was done fighting. The couple cried together, then they made arrangements for hospice.

“When he made that decision at Mayo not to seek more treatment, he wanted to be able to die then and there,” Kennedy said. “In the vehicle that transported him from Mayo to the residential hospice, he wished he could have died at that moment.”

Instead, he lived an additional 16 harrowing days.

A year later, surrounded by memories of joy, Kennedy can’t shake the memories of those final days.

“What he was enduring was the final erosion of his personhood as he defined it – the erosion of his very keen intellect and very strong body,” she said. “What I am left with is the memory of those final 16 days, of the torment he felt. That’s what the end-of-life act allows us to do, to say that at this moment, I’m fully mentally capable, I’m within a certain period at the end of my life, and I’m choosing that my personhood would end now.”

Unlikely allies

The debate over medical aid in dying has been circulating in Minnesota for years. It went nowhere under divided government, and its prospects are unclear in the narrowly DFL-controlled House and Senate. The issue has united some religious conservatives and Democrats in opposition, as well as disability-rights advocates and some doctors who believe helping end life is antithetical to their mission. It’s also tied into the bodily autonomy debate, garnering intense opposition from anti-abortion groups.

Oregon became the first state to legalize medical aid in dying in 1994. Today, 10 states plus Washington, D.C., have legalized medical aid in dying, also known as assisted suicide. (Proponents cringe at phrases such as physician-assisted suicide or euthanasia, saying those phrases distort the meaning of such laws.)

Opponents have strong reservations.

Anita Cameron, a disability-justice activist and director of minority outreach at Not Dead Yet, said her mother was living in Washington state in 2009 when doctors told her she was terminal. She was placed in hospice after a lifetime of struggling with chronic obstructive pulmonary disease. She lived another 12 years, Cameron said.

“This doctor clearly did everything she could without outright suggesting that my mom use assisted suicide,” she said. “Doctors often make mistakes when determining people to be terminal.”

Dr. Dennis O’Hare, who travels to homes and assisted living facilities for Bluestone Physician Services, said his patients aren’t asking for a life-ending pill.

“It’s interesting to get at what’s the driving force behind this,” he said. “If you look at the literature, it’s not pain. It appears to be more of an issue around personal autonomy, because we do a great job of taking care of pain.”

Some doctors oppose the legislation because they say it will put them in a difficult position if patients ask. The American Medical Association in 2019 struck a balance with its new policy position.

While maintaining that physician-assisted suicide “is fundamentally incompatible with the physician’s role as healer,” it also affirmed physicians may provide medical aid in dying according to their conscience without violating professional ethics. The Minnesota Medical Association has taken a neutral stance.

“You’re putting me as the physician in the role of gatekeeper,” said O’Hare, who opposes the legislation. “Now I have to decide what is a good versus a bad suicide?”

Minnesota Gov. Tim Walz said he watched his father suffer with lung cancer while Walz was a teen. His father spent weeks on life support before dying. It took his mother decades to pay off medical bills.

“I understand there’s an ethical question and moral component to this,” Walz said. “I come into this saying, ‘I witnessed this in our family, and I think there might have been a better way.’ ”

Sen. Kelly Morrison, DFL-Deephaven, a physician and chief author of the bill, said opponents have portrayed the bill as too broad when in fact it’s narrowly tailored. In Washington state, with a population about a third larger than Minnesota, fewer than 500 people were prescribed the life-ending medication in 2022.

“They’ve decided they want to end their suffering,” Morrison said. “They want to do it at a time they have some control over, and have the people they want to have with them when they do die.”

Thaddeus Pope, a professor at Mitchell Hamline School of Law and medical-law expert focused on end-of-life decision-making, believes it comes down to a standard American value: liberty.

“You know what’s best for you,” Pope said. “If you want to eat Big Macs or smoke, it’s your body, your choice. I should be able to choose the way in which I die.”

An evolving view

In 2008, when Washington voters approved the state’s Death with Dignity Act, Joanne Roberts was medical director of a hospice there and voted against it, believing it against her professional ethics.

Now retired and living in St. Paul, Minnesota, Roberts, 72, has flipped, with personal autonomy superseding her previous views. One reason is she’s now a patient instead of a doctor; she has myelodysplastic syndrome, a preleukemia condition.

“We’re a death-denying society,” she said. “When people put out an email, ‘Oh, I got this diagnosis,’ people say, ‘You can fight it! You can win!’ ”

Working in palliative care, Roberts’ goal was to relieve suffering for dying people, not help kill them. Once a skeptic, Roberts was indirectly part of seven people who participated in the Washington program, “people where all our best drugs just weren’t enough to relieve the suffering,” she said. It was always done with family support and love, she said.

“No one wants a slippery slope,” she said. “Everyone wants to make sure no one is coerced into killing themselves. And it just hasn’t happened. States that have legalized it have found no evidence of coercion, no evidence of people with depression who just want to kill themselves. People worry about Alzheimer’s patients: ‘What if the family wants to do this?’ Well, the family can’t do this. Doctors have to be able to decide, ‘Does this patient have decision-making capacity?’ ”

In Canada, however, some human rights and disability rights advocates have criticized its medical assistance in dying law as having gone down that slippery slope. The law was amended in 2021 to permit use by people with serious, chronic physical conditions that aren’t life-threatening. Next year, the law will broaden to include Canadians solely suffering from mental illness. A recent article in the medical journal Palliative & Supportive Care criticized the law’s expansions, saying the program lacks enough safeguards, data collection and oversight. In 2021, Canada had more than 10,000 medically assisted deaths – 1 in 30 of all Canadian deaths, according to Health Canada, the federal department that monitors the program.

Washington compiles an annual report for its Death with Dignity Act. In 2022, 452 Washington residents were prescribed the life-ending medication. Of those, 363 used the medication to assist in their deaths, 82% of whom were in hospice care. The underlying illness for nearly three-quarters was cancer.

At her home, Kennedy is still anguished about her husband’s death: a vigorous man who regularly did 50-mile bike rides reduced to a shell of himself. She points out four bracelets on her wrist; he bought her a flag charm from every country they visited. As Lawton was dying, he told his wife he wished he could have filled those bracelets.

She still travels the world for her anti-genocide nonprofit, and she sees a connection between that work and her legislation advocacy.

“There’s a clear moral and ethical path I see,” she said. “Both of them have to do with personal autonomy, with the ability for an individual to make decisions for themselves, using the full scope of the universality of human rights. That’s how we approach this issue of end of life as well.”