By Bart Windrum
First Posted at Hospital Patient Advocate on 9/12/2012
I find the nascent emergence of end of life (EOL) discussion in American Society welcome, dangerous, and alarming.
Maybe it’s just me, or maybe it’s because I’ve been thinking about EOL matters so much since 2004/2005 during and since my parents’ demises, terminally hospitalized, when my work took root. Maybe I should have anticipated. [The ability to anticipate; the root of successful patient advocacy, and so difficult to do.]
Maybe the topic is too big deep broad scary challenging, and maybe I ought to chill. Maybe American society can’t handle much. Or maybe things just progress step by step.
I see an arc taking shape, advising people that if they execute a living will and engage in “the talk(s)” with loved ones that these activities will result in dying peacefully (pretty much defined as not on life support). And people accepting that guidance as complete and sufficient.
These actions are vitally important and we all must do them. I see danger because the conversation doesn’t go further. That people exposed to these suggestions think that they cover the bases. This alarms me because I foresee thousands to millions of patient-families experiencing shocking demises made all the more shocking because they thought they’d done all that’s necessary to immunize their patient-families against bad EOL experiences.
Let’s distinguish between dying at peace versus dying in peace.
Living wills and family conversations are about dying at peace. That’s a feeling state and a place we aim for.
The trouble I’ve experienced twice is that myriad practicalities exist and emerge to interfere with advance plans. Dying in peace relates to learning about, understanding, and mitigating these practicalities—which include the procedural, ethical, legal, and persnickety. Dying in peace is the shape a demise takes from beginning to end; it requires strength and safekeeping to protect against intrusion by impediments to dying at peace.
Today, as best as I can tell, the EOL conversation is all about dying at peace—which remains a crapshoot without doing the deep work around dying in peace.