After listening to the emotional testimony of a woman who recently lost her daughter due to Lou Gehrig's disease, a Utah House committee nixed a proposed bill to legalize the use of end-of-life prescriptions.
Tammy Allred recalled the suffering her 27-year-old daughter endured after being diagnosed with ALS in 2020. As the pain spread from her legs to her arms, within a year "she could no longer take care of herself."
"She depended on me to take care of her, get her dressed, feed her, bathe her and do simple things like brushing her teeth and getting her a glass of water. For my daughter, this brought tremendous panic and anxiety — imagine being stuck in your body with no control," Allred told lawmakers during a House Health and Human Services Committee meeting Tuesday.
Many times, the mother and daughter spoke about how bad the pain would get, and how difficult it would become to care for her, Allred remembered.
She said her daughter "begged for some kind of relief" from the constant pain. She talked about wanting to move to a state "that would allow her to leave the world with dignity on her own terms," Allred said.
Medication given through hospice "wasn't even touching her pain."
"She hated that she was frozen in her body, and suffered from this tremendous disease. So today, I'm asking you ... to please consider passing this bill in honor of my daughter who died way too young of a terminal illness," without hope of a treatment, Allred said.
HB74 sponsor Rep. Jen Dailey-Provost, D-Salt Lake City, said she met Allred soon after she had buried her daughter.
The bill would "give people a dignified way to end suffering on their terms," Dailey-Provost said.
It would not allow those with mental illness or those who wish to die by suicide to access end-of-life prescriptions. Minors also wouldn't qualify, nor would old age be considered a terminal illness. It would also not be available to those who cannot give their full and informed consent, Dailey-Provost said.
She noted 11 other states allow the use of end-of-life prescriptions, and the worst-case scenarios and abuses people imagine "simply don't play out" in practice with the policy.
"I think that this is one of the most compassionate ways that we can respect life and the ability to spend one's final days in the way that they choose," Dailey-Provost said.
Several members of the public spoke both in support of and against the bill during a public comment session.
Laura Bunker, with Family Policy Resource, said the group opposes the bill "because Utah is a state that cherishes life, and we don't end suffering by ending the sufferer's."
Jean Hill, with the Catholic Diocese of Salt Lake City, said Tuesday was the fifth anniversary of her father's death. He had been told he had three months to one year to live, she said.
"Hastening his death with a bottle of pills was not his choice, but it might have been the choice of his insurance company," she said.
Hill said the company determined he was "not worth treating" due to his advanced age.
"True compassion" would be to give mental health resources to those faced with a terminal illness, Hill contended.
Former Democratic Rep. Rebecca Chavez-Houck, of Salt Lake City, sponsored the legislation for several years when she was a lawmaker. Since then, she says she's worked on the issue through a nonprofit. During the committee meeting, she said many never use the medication even when they receive it, but having the option gives them peace of mind.
"I ask you to not just listen but truly hear the voices of terminally ill Utahns and their families whose last wish is to die peacefully and not painfully," Chavez-Houck said.
Though some lawmakers expressed sympathy to families who have lost loved ones due to terminal illnesses, they expressed concern with the bill.
Rep. Cheryl Acton, R-West Jordan said, "I cannot simultaneously reconcile talking about enduring pain, enduring through emotional pain and so forth and also being someone who believes in the sanctity of life in all of its forms, and then simultaneously promote, or sanction, what this bill recommends."
The bill failed on a 9-2 vote.