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Faced with a terminal illness, Kylie wanted to die with dignity. But the state said she had no right.

It’s time for Utah to pass a “Death with Dignity” law, writes Robert Gehrke, so that patients don’t have to suffer needlessly.

(Courtesy of Tammy Allred) A photo of Kylie Kaplinis from 2019. Kaplinis was diagnosed with Lou Gehrig’s disease three years ago. As the disease progressed, she made it clear to her family that she wanted a dignified death, but Utah state law prohibits assisted suicide. Her mother, Tammy Allred, is fighting to change that in her daughter’s honor through a bill in the Legislative Assembly.

About three years ago, Kylie Kaplinis was living the life of a normal 25-year-old, hanging out with friends, going dancing, hiking, hitting the gym and getting ready to start cosmetology school.

“He was my baby,” his mother, Tammy Allred, told me. “She was a great, amazing person. She brought a lot of light and happiness to everyone she touched.

Then one day, Kylie’s foot started hurting, like she had somehow twisted her ankle. When it didn’t improve, she went to doctor after doctor. They identified it as a probable neurological problem and performed test after test as the pain rose in his leg.

Kylie has lost the use of her foot. She had to use a cane, and later a walker.

She went to the Mayo Clinic in Arizona where they ordered all possible tests and concluded it could only be Lou Gehrig’s disease, known as amyotrophic lateral sclerosis or ALS.

The neurodegenerative disease causes patients to lose muscle control, spreading throughout the body until the patient dies.

There is no cure and no effective treatment. Kaplinis had indeed been sentenced to death and she wanted out on her own terms, her mother said.

(Tammy Allred) A photo of Kylie Kaplinis on December 25, 2021. Kaplinis was diagnosed with Lou Gehrig’s disease three years ago. As the disease progressed, she made it clear to her family that she wanted a dignified death, but Utah state law prohibits assisted suicide. Her mother, Tammy Allred, is fighting to change that in her daughter’s honor through a bill in the Legislative Assembly.

“To sit there and cause her to lose her ability to use her legs, lose her ability to walk, lose her ability to use her hands,” Allred said, “she didn’t want to go through all those stages. She had a fine line that once she couldn’t use her arms and hands, she wanted to be completed. She wanted death with dignity.

Kaplinis had researched the issue even before his diagnosis and believed strongly in giving terminally ill patients a choice. When she learned of her own fate, Kaplinis told her mother that once she got to the point where she could no longer take care of herself, she wanted to end things.

But in Utah, it’s illegal for a doctor to prescribe drugs that would end a patient’s life. The legislature makes the ultimate decision about life or death, suffering or relief.

“She had been in a wheelchair for about a year and a half. It first took her legs and moved up into her arms and hands and she became pretty much a vegetable,” Allred said. “She wanted what was left of her dignity. She meant when she was done.

On January 20, at just 27 years old, Kylie passed away. A week later, her family buried her.

This week, Allred will be on Capitol Hill when HB74 — which would allow doctors to prescribe life-ending drugs when a terminally ill patient makes a clear, written request to end their life — is expected to get a legislative hearing.

“She should have had that opportunity and that comfort and relief of knowing it was in place if that’s what she chose to do,” Allred said. “She wanted it so badly.”

“I believe [I] to fight for this on her behalf, to be able to try and get this bill passed in her honor and in the honor of so many other people who should at least have a choice,” Kylie’s mother said.

The fight will not be easy. Similar legislation has been sponsored several times in the past. Former Rep. Rebecca Chavez-Houck has sponsored the measure previously and Rep. Jennifer Dailey-Provost, D-Salt Lake City has sponsored it three of the past four years. It didn’t go over well, and for the past few years it hasn’t been heard from.

(Francisco Kjolseth | The Salt Lake Tribune) Robert Gehrke.

This time it looks like it will, and Dailey-Provost said opponents are rallying against the measure again, but she hopes her colleague’s feelings have changed – as they have over time. in other states.

Currently, 10 states allow physician-assisted suicide. Three of them, including Colorado, were adopted by voters through a ballot initiative.

Since 1997, when Oregon passed the nation’s first “Death with Dignity” law, 1,905 people have chosen to end their lives through the program, according to data through 2020. So it’s not commonly used.

But for people with terminal illnesses – whether it’s an elderly person with cancer or a young one like Kylie – it gives those people some control in their final days.

“It’s important to know what you would do in this situation,” she said, “but to say it’s not an option to let people give up pain in a terminal situation is inhumane. .”

It’s inhumane. And for a legislature that likes to talk about the “proper role of government” and bodily autonomy (when it serves its purposes), it is cruel and wrong for the state to force a human being to suffer such immense pain and implacable.

It’s time to change that law and restore ultimate individual freedom and ease the suffering of the next Kylie Kaplinis.

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Mary Cashion

The author Mary Cashion