Posted on July 16th, 2012 by Admin
Editor's Note: Bart W. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
Learning What It Really Takes To Die In Peace
I can think of no greater good than for providers and families to enact what dying peacefully requires of us. We all say we want to die in peace. Few do, according to the commonly accepted definition: “at home,” to which I add, “with the dog licking my fingers.”
My parents each endured three-week terminal hospitalizations; Mom (2004) after sudden respiratory collapse, Dad (2005) when he crashed medically after pacemaker eligibility testing, acquiring, in a Jayco 100 facility, fatal nosocomial urinary tract MRSA which migrated through his bloodstream. I was their proxy. My patient-family experienced those weeks as shocking and harmful, in ways small and large, intrinsic and extrinsic, from beginning to end. I then began what became a lay person’s root cause analysis resulting in a 2008 book, Notes from the Waiting Room, a Colorado reform initiative: “The Option to Die in Peace,” and recognition from the Institute for Healthcare Improvement.
What is the deepest loss that you have suffered? If drinking is bitter, change yourself to wine.*
Rainer Maria Rilke’s verse regarding the nature of dying mystifies yet instructs. If our deepest loss is losing a loved one to a non-peaceful demise, but we want peace, what does it mean to “change yourself to wine”? To me it means deliberately becoming well versed in what’s required to manifest the oft-stated, rarely-achieved desire to die in peace. When our turn comes we will change ourselves to wine. How bitter or sweet that taste, that experience, depends upon how well we learn and apply what peaceful dying requires of us.
Be ahead of all parting, as though it already were behind you, like the winter that has just gone by.**
To die peacefully we must prepare deeply, many seasons in advance. Unless we expose, understand, and reconcile modern realities, we won’t keep up with the throes of parting, let alone get ahead of them. Routine advance guidance from palliative medicine and hospice leaves us vulnerable to extrinsically painful demises after holding out too long. I keep attuned for, yet don’t hear—from literature, panelists, even from hospice doctors addressing public meetings—lessons I’ve learned that seem most crucial:
• Advocating when hospitalized requires 24/7/365 vigilance and cultivation of an ability to unearth what we don’t know we don’t know—and advocating is proactive, demanding, and vital.
• Peaceful dying requires that we know about and consider medical error as a direct cause of death. Although medical error ranks among the leading causes of death in America, even iconic dying trajectory charts don’t include it (so I added medical error as a fourth trajectory).
• Using life support technology is a slippery slope. People generally don’t know—and providers don’t timely advise—that the equipment used in emergencies is also used two other ways: during surgeries and as treatment, with nearly reflexive transitions between uses. Disclosure issues abound and pull-the-plug scenarios inevitably, achingly, result (I proxied through two).
• Human nature causes us to ignore our advance directives. We naively believe ADs will save us, like the Titanic passengers felt secure under a blanket of starry skies. Psychological studies confirm our tendency to over-resolve in the abstract yet acquiesce to life-support measures as a demise unfolds.
• Peaceful dying unfolds over weeks, not days. 35–45% of hospice patients are there for only four to seven days—the period of bodily active dying (Dad stayed four). These hospice users spend their weeks leading to death outside the palliative and hospice realms. It’s not peaceful out there.
Here, in the realm of decline, among momentary days, be the crystal cup that shattered even as it rang.**
Losing a loved one shatters us. Our experience of their demise never dies. Remembrance rings on. Entering the glidepath to peaceful dying requires decisive orientation given lift by much foreknowledge. So I untangle and reweave, connect and share, present and publish nationally in my zeal to help fellow citizens obtain practical foreknowledge in enough time to absorb, reflect, and utilize it—for the greater good of many more peaceful demises.
See http://www.HospitalPatientAdvocate.com and my social media feeds.
The Sonnets to Orpheus, Rainer Maria Rilke, Stephen Mitchell translation, §II.XXIV;* §II.XIII;** §II.XIII.**
You must be logged-in to the site to post a comment.