Roughly three years ago, Kylie Kaplanis 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.
“She was my baby,” her mother, Tammy Allred told me. “She was an awesome, amazing person. She brought a lot of light and happiness to everyone she touched.”
Then one day Kylie’s foot began to hurt like she’d somehow twisted an ankle. When it didn’t get better, she went to doctor after doctor. They identified it as a likely neurological issue and ran test after test, all while the pain moved up her leg.
Kylie 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 every test they could 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 through the body until the patient dies.
There is no cure and no effective treatments. Kaplanis had effectively received a death sentence and she wanted to go out on her own terms, her mother said.
“To sit there and have her 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 steps. 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.”
Kaplanis had researched the issue even before her diagnosis and was a strong believer in giving terminally ill patients a choice. When she learned of her own fate, Kaplanis told her mother that once she got to the point that she couldn’t take care of herself she wanted to end things.
But in Utah, it is against the law for a doctor to prescribe medications that would end a patient’s life. The Legislature gets to make that ultimate decision about life or death, suffering or relief.
“She’d been in a wheelchair for about a year-and-a-half. It took her legs first and moved up into her arms and hands and she just pretty much became a vegetable,” Allred said. “She wanted what was left of her dignity. She wanted to say when she was done.”
On Jan. 20, at just 27-years-old, Kylie passed away. A week later, her family laid her to rest.
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 that was in place if that’s what she chose to do,” said Allred. “She wanted that so badly.”
“I believe [I] fight for that in her name, to be able to try to help get this bill passed in honor of her and so many other people who should at least have the choice,” Kylie’s mother said.
The fight won’t be easy. Similar legislation has been sponsored repeatedly in the past. Former Rep. Rebecca Chavez-Houck sponsored the measure before and Rep. Jennifer Dailey-Provost, D-Salt Lake City has sponsored it three of the past four years. It hasn’t gone well, and for the last several years, it didn’t get a hearing.
This time it appears it will, and Dailey-Provost said opponents are once again mobilizing against the measure, but she hopes that her colleague’s sentiments have changed — as they have over time in other states.
Currently, 10 states allow medically assisted suicide. Three of them, including Colorado, were passed 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 those people with terminal illnesses — whether it’s an elderly person with cancer or a young person like Kylie — it gives these people a measure of control in their last days.
“It’s important to know what you’d do in that situation,” she said, “but to say it’s not an option to let people forego the pain in a terminal situation, that’s inhumane.”
It is inhumane. And for a Legislature that likes to talk about the “proper role of government” and bodily autonomy (when it serves their purposes), it’s cruel and wrong for the state to compel any human to suffer such immense and relentless pain.
It’s time to change this law and restore the ultimate individual liberty and relieve the suffering of the next Kylie Kaplanis.
Correction: Feb. 7, 12:30 p.m. • This column has been updated to correct the spelling of Kylie Kaplanis’ last name.