Haphazard Encounters of the Last Kind (Why Everyone Hates the Thought of Dying)
One sentence abstract: Just as price transparency is required for a financially equitable and true marketplace, treatment orientation transparency is required for just and peaceful dying.
Since 2004–05 as a result of my parents’ three-week terminal hospitalizations (Mom’s, comatose and intubated in an ICU; Dad’s, precipitated by nosocomial MRSA), I’ve pondered what’s required of us to die in peace, and why most of us fail to. I look for root causes and think in terms of nothing less than industrialized society achieving a paradigm shift in how we approach dying.
Early on I identified the myriad of communication failures as the first root cause. Today Death Cafes, where people sit and eat together while discussing dying and death; and efforts like The Conversation Project, which fosters conversations intended to result in participants going home and completing an advance (end-of-life medical) directive partially address communication failures. (Other communication issues relate to citizens learning how to advocate medically and doctors learning how to provide treatment humanely.)
Identifying poor or absent communication as a root cause of peace-less dying is picking low-hanging—and not quite ripe—fruit. It’s not fully ripe because those other issues—advocating medically and treating humanely—are huge impediments requiring significant time, study, and practice to get good at doing.
Last fall (2012) I identified a second root cause: our failure to differentiate among dying outcomes. It occurred to me that the sole term “dying” fails to either forecast or describe the range of dying experiences ahead of us. I identified and named sixteen distinctly different dying situations, characterized by the relationship between how long dying takes and who or what controls as and when it does. With distinctions and names we can clearly differentiate what we’re talking over, wishing for, and directing about. I called this new work Windrum’s Matrix of Dying Terms™. Through it we may even acquire the resolve to “ripen our conversational fruit” by buckling down and learning how to advocate (citizens) and interact humanely (providers).
One way to view Windrum’s Matrix is as a menu. What sort of dying experience would you like to order for yourself: long, slow, and under machine control, or more quickly and under personal control? Is the idea of ordering your dying experience (that is, shaping it) strange? Isn’t that what we do in—a vague way—through advance directives? But how can we really order up, or direct, the death we wish for if we can’t identify the range of “restaurant” facilities in our communities? How can we experience satisfying dying if the process of matching the dying to their dying environment is half-baked? Right now, with the possible exception of some hospices, there is no matching.
Haphazard end-of-life encounters are the third root cause of non-peaceful dying. With few exceptions, everyone is indiscriminately thrown together at the end. The dying, family members, and medical providers—no one knows much, if anything, about the others’ orientation. Certainly not in advance.
To a certain extent “dining and signing,” including POLST and MOST directives, attempts to pre-communicate patient-family desires. That tells family members something about ourselves, and medicine something about us. But what do citizens know about providers? And even though hospice offers a softer pathway than hospitals, hospice organizations will differ in how they implement their caretaking, especially regarding pain management.
Suppose that we’ve already queried our primary care doctor to try to assess her orientation around the continuum from patient- (self-) directed dying to maintenance in a persistent vegetative state. We still know nothing about the overall medical marketplace—the clinics, hospitals, and myriad providers working within them.
Why can’t we, why don’t we know something in advance about the providers we’ll encounter in everyday medical situations that may, and do, lead to dying and death? The answer brings us back to the first root cause: communication failure.
We—all of us in the civic, medical, and governmental sphere—are too scared to talk openly and specifically about the full range of dying experiences that constitute today’s end-of-life menu. Aside from sudden dying, there are three basic arrangements: mainstream medically-managed dying characterized by medical control including ICUs and life support equipment; never-ending dying characterized by the persistent vegetative state; and self-directed dying characterized by either voluntarily stopping eating and drinking or by physican-assisted dying via what I term, in an admittedly casual tone which I believe helps our conversation, “the cocktail.”
Imagine being able to select a place of very late life treatment or of dying, in advance, based on knowing the orientation of the facility and of the people working in it. Think I’m ordering pie in sky? Think again. The way things are now, with no clarification until after becoming cojoined in haphazard encounters, we are all playing chicken with one-another—who’s going to talk first? Yes, palliative medicine and advance directives intend to provide advance assurance. Yet these valiant, necessary, laudable efforts cannot and do not prevent exposure to non-peaceful treatments and deaths—many of which occur despite our precautions (my parents’ deaths among them).
On the choice end of the spectrum, until it’s no longer taboo to openly discuss self-directed dying (whether it’s referred to supportively as “death with dignity” or antagonistically and erroneously as “physician-assisted suicide”) we’ll never be able to see where we all stand. In the mainstream, people who are led, feel coerced, or are by circumstances entrapped into protracted dying would benefit by knowing in advance that those steps wouldn’t even be considered, let alone taken, on their loved one.
On the other hand, imagine the serenity of knowing the last-phase treatment options in your community on both the facility and provider level. Like-minded people would work in facilities (or sections of them) and like-minded citizens would frequent them. Imagine knowing in advance the end-of-life philosophy and kind of treatment you are about to buy.
Imagine the load off of providers, who could expect to treat patient-families whose end-of-life ethics were compatible with their own. Now there’s a match made in, and for, heaven.
And so I call for a paradigm shift. Full disclosure. Just as price transparency is required for a financially equitable and true marketplace, treatment orientation transparency is required for just and peaceful dying. Haphazard end-of-life encounters ought to occur only during accidental and sudden conditions.
Bart Windrum is available for keynote and plenary presentations and workshops delivered at no additional cost while on site for presentations.