The year? 2003. Senior year of college. I was visiting Orlando for a conference with a bunch of dear friends, most of us pumped full of youthful enthusiasm and nerves for the imposing job market ahead. I wouldn’t know it then, but I was about to meet my future boss.
What sticks with me today nearly 20 years later — besides an infamous pirate photo, bumming around Cape Canaveral, and body surfing fully clothed at Coco Beach — was learning about Terri Schiavo.
Schiavo was a young Florida woman who suffered a heart attack in the late 90s, and after 10 months in a coma, was diagnosed as living in a “persistent vegetative state.” For the next nearly 20 years, her husband and family would duke it out in court over whether or not to prolong Terri’s life.
We happened to be visiting Florida in the days prior to Schiavo’s feeding tube removal so her story was all over the local news. (A few days later, the tube was subsequently reinserted per court order. And then removed again a couple years later, before she eventually passed away.)
Burned into my memory? The anguish and heartache evident on both sides of the divide, and my firm conviction that I do not want to be a vegetable. Ever. Ever, ever, ever. And I especially do not want my family tearing itself apart or making me a quasi-living memorial because they do not know my express wishes.
Fast forward a year or two. I’m working at Ukiah Valley Medical Center as a communication coordinator. As is typical for small, rural hospitals, I wore a multitude of hats — newsletter editor, event coordinator, photographer, flower arranger, wrangler of elderly volunteers, you name it.
Once again, Terri Schiavo came to the forefront of national news. The case had played out in state and federal courtrooms, spurring new legislation about end-of-life care. Health care organizations around the country, including ours, started talking about “advanced directives” and end-of-life care with fervor. I remember my boss hosting Q&A events about these legal documents that are meant to specify choices about health and life support in the event that someone is incapacitated and unable to communicate their wishes.
It would be a couple years later when I finally wrote mine at the ripe old age of 24. Single at the time, two friends witnessed the document in our cubicles at Adventist Health. Among other things, I decided that I do not want to be kept alive in a persistent vegetative state. Now, as I tell my husband every so often, don’t go pulling the plug after five minutes. Wait a respectable amount of time. Get a few expert opinions. Perhaps, wait until the insurance money runs out. Then, let my life end with mercy. Please.
A couple months ago, I had the opportunity to speak with Dr. Jillian Tullis, a researcher friend from University of San Diego, who studies death and dying. She asked me to describe what I think constitutes a “good death.” So many of my thoughts revolved around control and examples of what I do not want.
During our chat, I realized this is because I don’t have very many (any?) models of what a good death looks like. Most of the deaths in my personal circles have been extremely sudden and/or traumatic — plane or motorcycle accidents, suicide, murder, or devastatingly fast and severe cancer/stroke/heart attack. I don’t want any of that.
I do want some measure of autonomy, if possible. I do want to minimize my personal suffering, as well as the anguish of my loved ones. I don’t necessarily want to prolong my life if I become an emotional and financial burden. And I remain supportive of death with dignity and right-to-die legislation.
In contemplating what a ‘good death’ looks like for me, I realized I haven’t talked with my loved ones about it very much recently. How would they know I’m deeply afraid of not being able to say goodbye on my terms? That being trapped inside my body, unable to communicate, is my worst fear?
And that’s a key aspect of Jillian’s research and outreach — emphasizing the importance of talking about death and dying. Our conversation reminded how skittish U.S. society seems about death, how removed we make ourselves from the process, and how much we avoid talking about it, even as it’s happening all around us.
Not to be overly morbid, but have you thought about how you’d like to die? In the hospital? At home? If impaired, would you want to stay in an assisted-living facility? In a hospital? At home? What types of medications are you comfortable receiving? What types of extraordinary measures, if any, do you want? How do you feel about hospice? About feeding tubes? Have you considered organ donation? Do you want to be cremated or buried? Who gets to make the decisions for you?
More importantly, if you have thought about these issues, have you talked with your family and friends? Do you know your parents’ preferences? Your children’s? Your friends’? As for me, I think I’ll be revisiting my advanced directives soon and chatting with my loved ones. (I love making cheerful dinner conversation, don’t you?)
To learn more about advanced directives and living wills (terms differ by state), visit your state’s Attorney General web site (click here for California’s) or see the Robert Wood Johnson Foundation resources here. And don’t be part of the two-thirds of Americans who avoid making end-of-life care decisions.
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