Minnesota family advocates for end-of-life options: 'A family affair, like a wedding or a birth'

Glioblastoma entered the vocabulary of Nancy Uden’s family in 2022 after a seizure and a car crash led to an MRI revealing the cancer spreading through her brain.

"It’s a very insidious little octopus," she said.

The five-year survival rate for adult glioblastoma patients is less than 6%, according to the American Brain Tumor Association.

Uden had surgery, then radiation and chemotherapy, but now she lives from MRI to MRI, month to month. She dreads a regrowth causing more seizures and taking away her ability to speak, eat and move.

"What I've said for myself is I'll do [surgery, radiation, and chemo] one more time, but I won't do it a third time," Uden said.

The Corcoran resident is now advocating for medical aid in dying in Minnesota, but less for herself than for her family.

"It’s enough that you lose your parent, but it's something else when you watch them die of a terrible death," she said.

Her family members say the discussion about end of life options has evolved as the illness progressed. Daughter Wendy Parsons says she now doesn’t even view the potential decision as suicide.

"This is not that," Parsons said. "This is a knowing sort of where this is going to go. And having the ability which not many people get, that ability to plan this and have it be a family affair, like a wedding or a birth."

Opponents warn of abuses where decisions come down to money, and biases make doctors more likely to approve end of life medication for people with disabilities, or even based on race. They say they sympathize with patients and families, but expanded hospice and palliative care are better solutions.

"The suffering itself is difficult," said Cathy Blaeser, a co-executive director of Minnesota Citizens Concerned for Life. "The walking alongside is difficult, but the solution isn't to kill the person or say, ‘yes, your life isn't worth living. Yes, your suffering is too great.’"

Ten states and Washington D.C. allow medical aid in dying, under strict rules. Bills have come up in Minnesota since 2016, but have never passed.

"We make choices about so many other parts of our lives, and this is the last and biggest choice we'll make," said Deedee Welles as she advocated for the current End of Life Options Act at the Capitol in March 2023.

Welles never got the choice. She died the month after advocating for the end of life options bill last year, and her death is front of mind for Uden and her family.

"I look at my grandma and how strong she is and how she's really fighting for her rights right now, and I think, you know, it's important that she gets to make that decision now if she can," said her granddaughter, Makaylah Grose.

"I want this bill passed," Uden said. "I don't want to die a terrible death."

She doesn’t have a timeline yet and may never make the choice, but she can already picture an end of life party with friends and her final goodbyes with family.

"Whoever wants to be there with me, I would want them all to crawl in bed, and we will take care of this peacefully, you know, so that I can go on," Uden said. "And they can go on and we'll meet at another time."