03-03-2024, 06:29 PM
Nancy Uden took her place in front of legislators, the first to testify inside the overflowing hearing room near the Minnesota Capitol. A head wrap covered her scalp. It hid 36 electrodes that slow cancer cells' growth, perhaps adding months, even years, to the time she has left.
"I'm not afraid of death, but I am afraid of how I will die," she told lawmakers and onlookers. For more than a year, Uden has battled glioblastoma, a devastating form of brain cancer with an average survival rate of 14 to 16 months. She was beating the odds, but she knew that could change in an instant: "I don't have time for long debates. This bill has been in front of the Minnesota Legislature for 10 years already. It's time to act."
The bill — supporters call it medical aid in dying, opponents call it assisted suicide — would allow physicians to dispense life-ending medication to terminally ill adults with a prognosis of less than six months to live. Patients would then ingest it themselves.
Leading into this legislative session, supporters were optimistic.
The issue jumbles predictable political alliances: Supporters frame it as bodily autonomy or as a bulwark against government intrusion; opponents frame it around the sanctity of life or fears that a slippery slope could force suicide on people with profound disabilities.
Uden, 72, understands the irony of spending what may be her final cogent months advocating for a law that could help her die.
Nancy Uden is fighting for her life while she fights for a choice in her death.
"If I die of glioblastoma, it'll be ugly," Uden said. "It's going to affect my brain. I could lose my ability to control my bowels, my bladder, being able to walk and talk and have my memory. If it gets to the end and it's this horrible, ugly thing, I want a different option."
She's had aggressive treatment: surgery, radiation and chemotherapy. In the year after diagnosis, her doctor at Mayo Clinic in Rochester relayed little but good news. But the median time to recurrence is less than 10 months. Uden is already a few months past that.
When the cancer returns, she worries a growing tumor could press against her brain, inducing seizures and hallucinations, bringing painful headaches and blindness, stripping away her communication and tinting her skin blue. It's the type of death she doesn't want loved ones to witness.
She told legislators of the seizure that caused a car crash in late 2022, of waking up at North Memorial Health Hospital, of doctors finding a brain mass.
"I promised my family I would fight this ugly disease until there's no hope left," she told the committee. "If there are no more treatment options, I deserve more death options."
Uden wants to die like her mother did: Surrounded by family, a serene look on her face.
"It is now very real and urgent to me," Uden told the committee. "The Minnesota Legislature has made bodily autonomy a priority. Well, this is the final act of autonomy that any of us will ever have."
Uden knows this topic stirs unease. When she spoke in the packed legislative hearing room, she was surrounded by tales of personal tragedy. A woman with leukemia guessed she'd die before this hoped-for legislation passes. A woman paralyzed in a car crash in the 1980s was grateful that assisted suicide wasn't an option after her accident. A medical ethicist testified of no instances of coercion in the 10 states and Washington, D.C., where this is legal. Dozens testified about their own terminal illnesses or loved ones with painful, drawn-out deaths.
Some physicians opposed, some supported. Religious conservatives spoke of the morality of intentionally ending life and their fears that this narrowly defined law would be expanded.
One physician compared this to people who jumped from the World Trade Center on Sept. 11, 2001. Would anyone call that suicide, since death was imminent and they simply chose a quicker, more painless way?
Uden understands that unease. She also believes no one should have a say in her death other than her and her family. Her biggest concern with dying of glioblastoma isn't her own pain.
"I don't want my kids' last memories of me to be hallucinations and having seizures," said Uden, who retired a few years ago as a Great Clips executive.
"This will be harder on us than it'll be on you," replied her husband, Jim, a retired pastor.
"I want them to experience me at my best," she said. "That's all we have when someone's gone: Memories. And so I want those memories to be good. They won't all be good. But to the point I can control those memories, I want to."
https://www.startribune.com/nancy-uden-wants-to-live-but-also-wants-to-choose-when-shes-going-to-die/600347136/