Talking about death and dying: Whether you’re 22 or 82, make your end-of-life care decisions now

I would prefer to be cremated and sprinkled.
Preferably at Pebble Beach.

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–besides an infamous pirate photo, bumming around Cape Canaveral, and “body surfing” fully clothed at Coco Beach–is learning about Terri Schiavo.

Terri 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 Terri’s feeding tube removal so her story was all over the local news. (A few days later, the tube was subsequently reinserted on 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.

I wouldn’t mind if Monterey Bay became a final resting place.

***
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 girl, event coordinator, writer, photographer, flower arranger, you name it.

Once again the Terri Schiavo case 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 were meant to specify choices about health and life support in the event that someone was incapacitated and unable to communicate their wishes.

And Mackinac Island. Sigh.

It would be a couple years later when I finally wrote mine, but at the ripe old age of 24, I did. I had two friends witness the document in our cubicles at Adventist Health. I decided, among other things, that I did not want to be kept alive in a persistent vegetative state. Now, as I tell Mr. T 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.

***
These themes have reemerged for me over the last few weeks thanks in part to some seriously depressing TV (thank you Grey’s Anatomy and Private Practice), several dear friends passing, and also, a national news case about Grace SungEun Lee, a woman who battled her parents in court for the right to die. Among other things, I am reminded how skittish our society seems about death, how removed from the process of death we make ourselves, how much we avoid talking about it.

Downtown Mackinac Island. For the record, I’d like my
organs donated, if possible.

Not to be overly morbid, but have you thought about how you’d like to die? If impaired, would you want to be 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? 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 directive soon and chatting with my loved ones. (I love making cheerful dinner conversation, don’t you?)

To learn more about advanced directives or living wills (these 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.

xoxo,
shawna

* From this site, I learned that only an estimated third of Americans have made advanced directives!

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