Nancy Uden, face of medical aid in dying in Minnesota, dies at 73

Nancy Uden sat in the heavy, durable wheelchair in her living room in Corcoran, unable to move and barely able to speak. When she did mumble out a few words to the family, friends and old colleagues who gathered to say goodbye at her living wake, she made those words meaningful: “I love you.” “Thank you for being in my life.”

It was a rainy day in June, exactly five weeks before Uden died last weekend at age 73. The past 18 months had not been how she planned to spend retirement in the new home she shared with her husband, Jim: a 2022 seizure that caused a car crash, then doctors finding a brain mass, then surgery and rounds of chemotherapy and radiation to treat the aggressive glioblastoma tumor that Uden nicknamed “Gil.”

As she fought for her life, Uden also battled for something else: the right to choose the time and manner of her death.

Uden became the most powerful voice for medical aid in dying legislation in Minnesota last winter, testifying to Capitol committees, doing interviews and press conferences with 36 electrodes attached to her scalp, part of a medical device she hoped could add months, even years, to her life.

She wanted the option of having a pill to end her life before her cancer made life unbearable.

She was the first to speak before a House committee in January, then stayed for the rest the emotional public hearing that lasted until evening. She told legislators she didn’t have time for long debates — that similar legislation had been proposed for a decade, and she needed it to pass before it was too late.

“I’m not afraid of death, but I am afraid of how I will die,” Uden told legislators.

But the legislation did not pass in time for Uden. Last Saturday, not long after her husband fed her breakfast, Uden had a cluster of seizures and died.

Her family members said they felt grateful Uden died before her symptoms got even worse. Uden was worried she’d have the worst version of the deadly cancer: hallucinations, blindness, blue-tinted skin — the type of death she feared would scar loved ones forever.

Her family does not know whether she would have used a pill to die at the stage she reached before her body gave out on its own. But her husband and daughters each said they wished she’d had the option.

Brittany Edwards, one of Uden’s three daughters, brought Greek food from Christos the night before Uden’s death and fed her mother spanakopita, pita, hummus and baklava. Edwards could see her mother deteriorating; Her mind was still there, but she could barely communicate.

“She didn’t want to be in a place where she was a vegetable,” Edwards said. “I was pleased she didn’t get that far. A lot of people [in the 11 states where medical aid in dying is legal] get it but don’t end up using it. But you don’t know if you’ll need it or not. She just wanted the option. She wasn’t suicidal or anything. She was still getting treatment. She still favored life and wanted a good quality of life. But she didn’t want it getting to a certain point and not be able to participate in life, not be with family in a meaningful way, be in pain.”

A draft of her obituary refers to Uden as “a force of nature,” which anyone who crossed paths with her would confirm: a powerful, stoic matriarch who weathered hardship and held her family together. She was the oldest of five in an alcoholic and abusive household. When her mother walked out on the kids, it fell to Uden to raise the youngest siblings. Her youngest sister, Lori Riehle of Deadwood, S.D., visited Uden last month and reminisced how Uden would sing her to sleep every night with “Somewhere Over the Rainbow.” Riehle would cry, then she’d ask her oldest sister to sing it again.

“Nancy was our mom,” she said. “She took care of us in some really rough times.”

Uden — born Nancy Anne Ek — met and married a ranch hand at the Triple U Ranch in South Dakota, opened an A&W Restaurant, had two children, divorced, remarried, had a third child, divorced again, then moved to Minnetonka and in 1987 married Uden, whom she called her soulmate. She graduated from Metro State University while working full time and raising her kids and went on to a successful career in human resources. She was proud of getting sober late in life, and she started a scholarship fund at Metro State to pay for child care for single mothers who were students.

After the cancer diagnosis, Uden tried to turn her life’s final chapter into a battle for other Minnesotans to have a choice about their time and manner of death.

“Nothing grabs people’s attention or makes a bigger impact than to see the lived experience,” Dr. Rebecca Thoman, a Minnesota physician and the director of Doctors for Dignity, which advocates for medical aid in dying legislation, said shortly before Uden’s death. “She’s so relatable, so approachable, so accessible — it makes the whole conversation relevant and not so scary. When Nancy speaks, we can’t look away and pretend it’s not real. She embodies what we’ll all face.”

“It’s a rare person who advocates for anything, but to do it in the face of death and the impact on your family, it’s really remarkable,” Thoman continued.

Clockwise from top, Uden and friends Marie Divine, left, Debbie Anderson and Kristina Horner raise a toast during a Galentine”s Day brunch in February at Anderson’s home in Edina. Dozens gathered at Uden”s Corcoran home for a living visitation in June. Uden and her close friend Margaret Stone say goodbye after a June luncheon at Uden’s home. (Alex Kormann, Star Tribune)

Uden’s family plans to continue telling her story to advocate for this legislation, which proponents hope to again bring before the Legislature next session. Opponents consider the law unnecessary and potentially dangerous. The Senate majority leader said earlier this year that the process will take time as Minnesotans meditate on the controversial subject. Meanwhile, advocates believe Uden’s story will live on.

“Nancy must have known this would never help her,” said Thaddeus Pope, a professor at Mitchell Hamline School of Law and medical-law expert focused on end-of-life decision-making. “She was doing this purely for others. This can be a silver lining for her family.”

Proponents have always framed medical aid in dying as a last-resort option, for when symptoms can’t be helped by hospice or palliative care.

Uden’s widower doesn’t know if she would have taken the life-ending medication if she had that option. She was getting close to wishing she had that option, he said.

“I would have been there for whatever she needed,” Jim Uden said. “Regardless of what direction. I was right there when she died, holding her head in my hands, gently, saying, ‘Stay with us, stay with us’ — until she couldn’t any more. The tumor took her the way she would have wanted to go. But you couldn’t count on it.”