Tamra Allred is fighting for Death with Dignity in Utah, in honor or her daughter, Kylie Kaplanis.
My daughter, Kylie Kaplanis, was born on September 17, 1994. She was such a bright light from the beginning. She was the type of girl who was friends with everyone. She thrived on social connections, always cracking jokes with the sole purpose of making others smile. It was no surprise when she signed up for dance and drama classes whenever the opportunity arose in school, or when we heard her singing around the house without an audience.
A Fighting Spirit
Kylie was also stubborn. If she wanted to accomplish something, she did everything she could to make it happen. Nothing would stand in her way. On the flip side, if she didn’t want to do something, everyone knew it, and we all knew there was nothing we could do to change her mind. She was magical in this stubbornness though, because even if she fought against doing something she didn’t believe in, it was ok, because she always had a smile on her face and she never held grudges. This dogged determination worked for us all.
Her fighting spirit persisted even on the worst day of our lives up to that point. At only 25 years old, Kylie was diagnosed with amyotrophic lateral sclerosis, or ALS, the three-letter acronym that no one wants to hear in relation to their child. For some people, ALS moves slowly. Some people have years to adjust to their decline. But, not Kylie. She had a very progressive type of ALS, and her body rapidly changed, without any time for us to adjust or accommodate her before another part of her body started failing.
Everything happened so fast, that as her family, we physically and emotionally had a very hard time keeping up, to support her in the way we needed to. As her mother, I knew that I had to do everything possible to be there for her, knowing that her time left on Earth was limited. We focused on the positive as much as we could. We put together Kylie’s bucket list and started checking off the boxes. We talked a lot…about everything.
During all of this turmoil and physical pain, Kylie was determined to keep fighting, smiling with her hair and makeup done, to try and keep some normalcy. She underwent any treatment we could set up for her: several MRIs, muscle and nerve biopsies, an invasive autoimmune treatment called IVIG, which put her in the hospital for several days from all of the side effects, a spinal tap, and constant blood work. It was too much to bear for someone her age, and I would have done anything to be in her place. She kept a strong face through it all though, and her perseverance is something I will always admire.
Advocating for Death with Dignity
Like some patients with terminal illness I have heard from, who find out about Death with Dignity once they may need it, Kylie was a strong advocate for many years, way before her ALS diagnosis. She had done tons of research on the movement. She had seen every documentary there was on the topic. Even at her young age, she would say things to me like:
“Mom, when I become terminally ill, I want the right to choose Death with Dignity.”
So, I was not surprised that she brought up Death with Dignity with me again shortly after she found out she had ALS and what was to come for her physically. She had drawn a line in the sand. She told me that once she lost the use of her arms, that she wanted to know she had the choice to use Death with Dignity if she decided to. I supported her choice completely.
We Lived in the Wrong State
Although Kylie wanted assurance that Death with Dignity could be an option for her to die peacefully at home at the time of her choosing when the last days of her life became too unbearable, this was not a wish that could be granted to her as a resident of Utah. Ten states and the District of Columbia allow terminally ill patients the right to die with dignity. But Utah does not.
If Utah had this vital option, Kylie would have a drastically different and better death in her home, surrounded by all of us, and the comforts of being in her own bed. She also could have had the extra energy to focus on having fun up until the end, knowing this option was there if and when she needed it.
Kylie loved watching movies. She loved spending time with her friends. She loved to laugh. During the last weeks of her life, she deserved to watch movies. She deserved to say goodbye in a meaningful way. And, she deserved to laugh with us all. If our state had Death with Dignity, I know she would have been at more peace and could focus that energy in a positive way.
Instead, her energy was spent on sleepless nights, the loss of bodily autonomy, and constant pain. I had to bathe her, brush her teeth, and watch her lose control over her body. Can you imagine going through this at such a young age? I can’t.
Because of our residency in a state that doesn’t give terminally ill patients the right to choose how they die, Kylie couldn’t choose when to say enough was enough. She couldn’t choose to die peacefully in the home she felt safe in here in Utah. It wasn’t fair. And I am calling this out.
Fighting for Other Kylie’s
My beautiful, kind, loving daughter died on January 20, 2022. My head is still in a fog. The grief impacts my memory. Every day is so hard. But, I know Kylie would want me to continue doing everything I can to fight for Death with Dignity for Utah and all other states where patients who are going to die can’t make this choice. And, I am.
I am sharing her name and story on the news and social media outlets. I testified in front of the House Health and Human Services Standing Committee at the Capitol in Salt Lake City in February, in support of our aid-in-dying bill. I am writing this article now.
My daughter died at age 27. This is unthinkable for any parent. Knowing that her choices in how she died were more limited here in Utah than they would be in a state with an aid-in-dying law makes the pain more acute. I can’t sit back and wallow though. I am putting everything I have into ensuring that our state will pass this law, and other Utah residents, old and young, can have the peace of knowing they can choose Death with Dignity if they become terminally ill.
Any patient with terminal illness who wants Death with Dignity should not have to uproot their entire life, while depleted of energy, during their last days, to have this option in a state with the law. They should not have to leave behind their comforts, their home, their loved ones. They should not have to spend their final days looking for a place to live in a foreign city, find new doctors to go through invasive consultations with, and jump through all of these bureaucratic hoops. It is deplorable that this is the best we can offer patients right now who are not lucky enough to reside in one of the 11 jurisdictions with this right.
Enough is enough. I am sick of hearing “Well, you could always move to a state with a Death with Dignity law to access it there.” Utah needs to accept that this is unacceptable and that we need to pass this law now. Every other state without this option needs to do the same. While Kylie didn’t get this option in Utah, I find some semblance of peace knowing that I can fight for other Kylie’s to get the death they deserve.