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  • Writer's pictureMarlisa Mills

Mom is Dead Folder and the White Nightgown...why we need to plan

The times, they are a-changing. And not a moment too soon.

I read this quote recently, from a European physician who was sending his research assistant to the United States for the first time.

“The first thing you need to know about Americans is that they think death is optional.”


The quote may be essentially accurate, but all across the country, doctors, policymakers, patients, researchers, and advocates are coming together to make a joyful, and sometimes not-so-joyful, noise to raise awareness of how we in tthis culture end our lives. In spite of our head-in-the-sand approach to death, most of us are realizing that there must be a better way to die than what we’re now doing. Dying in ICU to the beeping of machines, separated from those we love. Being kept alive way beyond our expiration date...because medicine can. Leaving no written documents stating our wishes for the final days, and beyond. Convincing ourselves that one day, later, when we’re older, we’ll take care of the essentials. Many of us even sign a basic document which says something like this:

In the case I have a terminal illness, or I have no quality of life, take no extraordinary measures.

Problem: define your germs, as my high school English teacher reminded me. In our world, cancer is rapidly becoming an illness that even the large oncology clinics are referring to as “chronic,” not “terminal.”

“Quality of life...” there’s subjective. One person’s ability to tolerate a prolonged illness or disability is markedly different from another’s.

Then there’s the wonderful term, “extraordinary measures.”  What’s “extraordinary” to you may not be to me, and vice verse. Will you live permanently in a wheelchair? In a nursing home? On a ventilator? In chronic pain? How MUCH pain? And how about that one final big gun antibiotic to keep you alive “a little while longer?” What if you’re unconscious? Who decides?

You see the problem.

So just signing a cookie cutter living will may not set up a tolerable end of life environment at all. To be smart people, were abysmally ignorant about what can happen if we don’t wake up.

And supposing we’re lucky enough to live to a ripe old age, healthy save for a few aches and pains and inevitable insults of aging, we still have decisions to make. Where do we want to die? Who do we want around us? How many interventions do we desire when the lungs and heart and brain finally sputter and slow? Do we want our pets on our bed a the end? (HECK NO, THAT'S NOT FRIVOLOUS!)  And you want harp music in the final hours? Or is Willie Nelson your thing?

I’m not kidding. As much as I’m not fond of the term “good death,” I do believe in the concept. I believe in it so much from having worked for hospice that I have a my white cotton Battenberg lace nightgown picked out and in a chest, ready and waiting. Please don’t put me in an off-gray hospital gown against a white pillowcase if I’m jaundiced. Orange just isn’t my color.

We laugh about this at my house. We chuckle uncomfortably about the Mom Is Dead folder I have in my office, a concept lovingly extracted from the creativity of a good friend who reminds his son where the important documents are.

But I promise you, there’s nothing funny about NOT planning. The scar tissue left by a bad death is devastating to everyone we love, not just to ourselves. We have some obligation to plan our deaths at least as well as we plan this summer’s vacation.

Tomorrow I’ll write about the lovely lady who thought “no extraordinary measures” had her covered....and lived...and lived...and regret it.


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