Dying is inevitable, but what happens when one would rather die than continue living? What happens when someone’s heart is replaced with a pacemaker that ends up outliving their brain? These are scenarios that Katy Butler, author of “Knocking on Heaven’s Door: The Path to a Better Way of Death,” discussed during her visit to Sonoma State last Tuesday.
At the age of 79, Jeff Butler, Katy’s father, started taking his first steps toward death. A year after her father had a stroke he developed a hernia and his doctor refused to perform surgery unless he received a pacemaker. Originally, Butler and her family figured it was a “no-brainer,” but later realized that it had more implications than they had originally thought; he would have to continue living his life with a pacemaker, even as his brain was dying.
As Butler began to talk about her father, she told the audience how her father slowly became demented. She shared an example with the audience to allow everyone to understand what her father’s brain was like by reading an excerpt from her book.
“I set a glass of water and a cup of pills next to my father. Instead of taking the pills with the water, he picked up the glass of water and poured it into the cup of pills and watched it overflow,” Butler said.
Butler described her father’s struggle throughout the novel, which she decided to write in a kind of braided style. Episodes of her father’s illness are broken up by chapters about the medical industry and the different ways it affected her and her family, and each part is told in a different ‘voice.’
Butler explained that she chose to write with a braided structure because she wanted to offer some “light” where her story became “dark.” She explained that she didn’t want to make the reader suffer too much.
The first part of her story is written in her voice as a daughter, as she explains her father’s slow death. The next part of her story is written from a journalist perspective, as she researches information and facts about doctors prolonging lives that shouldn’t be prolonged for money. The last part of her book is written from “the voice of the soul.”
The research that Butler accumulated deals with how advanced medicine is prolonging the lives of individuals whose quality of life has drastically diminished due to illness or accident. With all of the advancements, people are able to get medical treatments that allows them to outlive their brain. Butler found that oftentimes doctors choose to make patients go through surgery, rather than sitting down to talk about their options because it earns hospitals $54 to discuss options versus the thousands of dollars they make for performing surgery.
Although Butler was going through a stressful time helping her father live an extra six years in pain, she realized that she was able to fall in love with her parents again. She mentioned that she hadn’t ever been very close to her mother, but slowly they were able to rekindle their relationship through their trials together.
Butler has been able to reach people everywhere with her book, “Knocking on Heaven’s Door: The Path to a Better Way of Death.” People have flooded her inbox with stories about their loved ones going through the same thing that Butler’s father went through. Butler hopes that people and doctors will understand that everyone should be allowed to die in peace rather than suffering if that is what they choose to do.
After concluding her discussion Butler opened the floor to questions from the audience.
Q: How much do you fabricate the dialogue?
A: I did not invent any dialogue. If I had forgotten any part of the story, I did not write it in the book.
Q: Did the decision to write the book with a braided structure come naturally?
A: The braided structure did not happen consciously. First, I had written in my journal - in the daughter’s voice. The second stage involved my journalistic approach, which are all of the facts I accumulated. The third stage is the voice of the soul. I would keep an index card with me at all times to write down anything that “came to my soul.”
Q: If I wanted to write about my family or a specific member of my family, how would I do so without hurting our relationship?
A: I recommend writing the first draft uncensored. You can’t cut back on what isn’t on paper yet. I could not have written this book if my parents were still alive. I did tell my two brothers I would be using them in little stages of the book. One of my brothers didn’t care. The other brother is semi estranged from me now but I changed their names in the book. I also kept the negative comments to a minimum and only used what was relevant.
Q: What’s next for Katy Butler?
A: I’m not sure yet. I have always been a bookworm and now I am a public figure. My book now is on the San Francisco best sellers list. I am a first-time author of 64 years.
Q: Getting started is always the hardest part. How did you put everything down on paper?
A: I kept a journal for years. I recommend that everyone writes in a journal. Even if it is for 20 minutes each morning, it has been known to decrease stress, asthma, and more.
Q: Who would benefit from reading this book?
A: Doctors (cardiologists especially) and any Americans that want to know about reimbursing health care.
Q: What response are you getting from the medical community?
A: Doctors have thanked me for saying what they couldn’t say. I had an ICU doctor write to me and say that they are horrified about what goes on around them. They said that they will make more money putting someone on a ventilator than sitting them down and talking about the options. There were even ICU nurses that are now hospice nurses because they felt like they had tortured patients before as an ICU nurse.
Q: Did you have writer’s block?
A: I believe I had a form of writer’s block. I never stopped writing but I would continue editing the same few paragraphs over and over again.
Q: How do you want to go?
A: I do not think it is realistic to think I could die in my sleep and I wouldn’t want to. I want to be able to do five things before death; Thank you, I love you, I forgive you, Please forgive me, and Goodbye. I would want to do some bucket list type things. I would not want my death to be terribly painful. I would say my biggest fear is dying of dementia, as my father did.