End-of-life care

FEN members, more so than the citizenry at large, are dedicated to the goal of dying in peace. However, I suspect that FEN members, very much like most everyone else, may inadvertently misconstrue the meaning of the phrase “to die in peace” and what it may take to achieve given our society’s end-of-life milieu.

Based on my experiences as a fifty-something throughout each of my parents’ unexpected terminal hospitalizations in 2004 and 2005, I learned to distinguish between dying IN peace and dying AT peace.  “Dying in peace” is usually said in reference to one’s final moments. That’s actually dying AT peace—an existential state of being. Dying IN peace refers to the sequential, cumulative experiences of a dying person and their loved ones throughout the months, weeks, and days of a demise. In my experience, dying AT peace requires dying IN peace; if enough of the months, weeks, and days leading to death are infringed by peaceless experiences, the likelihood of a peaceful passing is diminished for everyone involved, and any last-moments peace is negated.

Our end-of-life milieu is peculiar—a uniquely complex time. Historically it’s a short epoch, beginning in the early to mid twentieth century with the onset of life support technology to sustain breathing and cardiac functions. Iron lungs, modern ventilators, cardiac resuscitation, implanted sustenance tubes, advanced pharmacology, and brilliant surgeries keep people alive, and they can and do keep bodies “alive” too. Now the technology has a home (the ICU). It also roams free, deployed in first responders’ vehicles and even in public buildings. Our socio-medical-legal framework defaults to the use of high-tech, low-touch interventions as a first, middle, last, and even unending resort.

While short historically, this epoch is long in our experience. It’s endured for the entire lifespan of virtually everyone alive today. Meanwhile, the nascent movement by both civilians and some medical professionals to humanize the end of life is now about one generation old. It’s time to ask: how’s it going? How confident are we that we may experience the peaceful deaths we desire within the mainstream setting?

Our current dying milieu is much greater than the presence of medical technology. Dying in peace, and at peace, requires more today than becoming “death positive” or procuring the means to self-deliver at the time of one’s eligibility and choosing. It requires avoiding the worst aspects of overmedicalized dying that entangle and entrap people.

We have been offered two primary end-of-life guidances. Medicine’s unified voice tells us to execute one or two basic advance directives (omitting that another ten or so relevant directives exist), and to assign a trusted person to function as a medical proxy should we lose competency (omitting that almost all of us will be novices in that role, nor offering any guidance for how to function effectively as a proxy during emergent and red-hot medical circumstances).

Civilians leading the death-positive movement suggest engagement through workshops and retreats with a spiritual aspect. The practical applications, as best as I can assess, are to increase one’s ability to manifest grace under pressure (equanimity) and to manifest resolve. Equanimity is necessary to keep situations that conflict with one’s values from getting further out of hand, and resolve is necessary since in those situations we’re going against the strong socio-medical tide that carries people to overmedicalized deaths. Medicine has a name for this prevalent scenario: the medical conveyor belt.

It is to be expected that a discipline will define things according to its purview and environs. Thus, it is evident that medicine’s definition of the conveyor belt begins after one has entered a medical process or institution, as if the conveyor is one universal thing that we stumble onto, each in turn. I say that there are as many medical conveyor belts as there are people, each with origins deep inside us. Defining the conveyor belt as something completely outside ourselves absolves us of responsibility for getting on it; defining the conveyor belt as having unique beginnings inside each of us may help us make choices—some hard—more in keeping with our end-of-life desires.

We are drawn to medicine. After all, medicine is familiar. For most of us, for most of our lives, medicine has worked well, even splendidly—sometimes saving life. Combined with a milieu that defaults to endless medical engagement, medicine exerts a siren song that attracts us. It feels like a safety net despite the risk of ending “wired up” in an ICU, in the end-of-life situation exactly opposite from the one we purport to want.

I know a FEN member who has an implanted cardiac defibrillator, a prudent move for a seventy-something person who’s far from ready to leave life and is not terminal. As would be expected, they also have strongly worded Advance Directive and Medical Power of Attorney documents and very explicit instructions known to and understood by their spouse and adult children. In these ways this person is an atypical American—ably aware and prepared.

Yet dying in and at peace, by definition, will most likely require that the pacemaker at some time be deactivated. Despite learning that their cardiologist is a politically conservative, practicing Catholic with deeply held beliefs that disallow his turning an implanted defibrillator off, this FEN member has not replaced the doctor with one who shares the values that have drawn them to FEN.

What might account for this potential impediment to peaceful dying being acceptable? An understandable attachment to medicine, which has worked very well for them so far. The reasons enunciated to me include understanding the risk inherent in their cardiologist’s beliefs mandating that he refuse to disable the defibrillator at some future time, even after numerous patient-initiated conversations exploring doing so (although the doctor finally confirmed that he would refer the patient to a cooperative doctor upon a patient request); the determination as a FEN advocate of continuing a dialog with a respected community opponent in a locally active political end-of-live environment; and the fact that this doctor is among the leading cardiologists in the region, providing technically superior medical treatment. So our member has made a risk/benefit analysis based on available medical expertise, an assessment about the severity of their condition (more accurately the lack of severity), and the absence of other co-morbidities that might otherwise tilt the analysis toward immediately replacing the cardiologist. The risk being run is that at some time their medical condition could deteriorate quickly, landing them in a conventional medical situation from which they could lose agency and/or have to attempt extraction via directives and proxies, exacerbated by having to find, engage with and trust an unknown cardiologist in the thick of a medical crisis, assuming that the current cardiologist fulfills his promise to refer.

Medical risks, especially those associated with late-life hospitalizations, increase to dangerous levels at advanced age or debility. We remain drawn toward medical engagement and have difficulty giving it up. For most, some of that difficulty is death-denial, plain and simple. Our trouble is exacerbated, because denial results in unfamiliarity with obstacles to peaceful dying that are inherent in the medical system and our own hopes, fears, and misunderstandings that draw us toward it.

I have identified ten obstacles to peaceful dying in our modern milieu. The first three I mention because they are widely experienced and acknowledged. I offer no guidance about them because they are deeply personal. They are religious beliefs, family relations, and personal finances.

About the other seven obstacles I have a great deal to say, because delving into them is the only way to understand their makeup and the pull they exert. Mitigating them requires us to increase our sensitivity to their presence and onset in order to adjust our choices before we land on the medical conveyor belt. The obstacles are related, arising together in proximity and in predictable sequence.

The obstacles in my end-of-life lexicon are:

1. Difficulty distinguishing among dying situations

2. Trouble determining when enough is enough

3. Over-reliance on advance directives

4. Exposure to medical snafus (misadventures and/or medical errors)

5. Ignorance regarding life-support matters including systemic overrides

6. Inability to advocate medically for a loved one or oneself

7. The Opaque Dying Marketplace

Obstacles 1–3 are personal; they manifest together like a clockwork mechanism, instigating a train of decisions that pushes us toward the medical conveyor belt. Once we’re in dire medical situations we’re subject to forces that we have not learned how to forecast; that arise fully, quickly; and that take significant prior examination to learn to recognize and deal with. Obstacles 4–6 are systemic, pulling us onto the medical conveyor, where most of us learn hard lessons moment to moment. Obstacle 7 is so pervasive that it’s like the atmosphere we live under—exerting pressure that we don’t even feel. In the Opaque Dying Marketplace medicine refuses engagement with civilians on any but the narrowest and most delayed terms, deflecting our upstream inquiries into end-of-life matters, the answers to which might help us mitigate or avoid the first six obstacles.

I examine these obstacles and solutions to mitigating them in my books, The Promised Landing: A Gateway to Peaceful Dying (2018) and Notes from the Waiting Room: Managing a Loved One’s End-of-Life Hospitalization (2008). 

My assessment over fifteen years’ engagement is that even “death positive” people continue practicing death denial if they balk at or refuse to examine our milieu’s obstacles to peaceful dying. I understand the disinclination; it takes time, and it’s not a particularly pleasant topic, except for, upon completion, knowing that you’ve learned crucial information about how our system works and how we succumb to it. With sensitization we can recognize obstacles much sooner, seeing their emergence and deflecting their ill effects well before we are upon them, and they are upon us. Especially for FEN members and those inclined to consider self-deliverance, we need functional personal agency in order not to fail. We must steer clear of the late-life medical conveyor belt and the dying situations it delivers us to in order to increase our likelihood of dying in peace, and dying at peace.

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Bart Windrum has been at the forefront of the citizen movement to reexamine the end of life since his parents’ hospitalized demises in 2004 and 2005. He is an independently publishing author. His first book, Notes from the Waiting Room: Managing a Loved One’s End-of-Life Hospitalization, was a 2009 Colorado Book Award finalist. His 2018 followup, The Promised Landing: A Gateway to Peaceful Dying completes a lexicon that identifies impediments to peaceful dying that we can learn to recognize and mitigate. Bart’s work is recognized by medical professionals, policymakers, and academics; spiritual leaders; and noted civilian end-of-life authors. Signed books and speaking arrangements are available at www.AxiomAction.com, Bart@AxiomAction.com

© 2019 Bart Windrum. Copyright of this article (Anticipating and Deflecting the Worst Effects of Our End-of-Life Milieu, May 2019) is retained by the author, with first publication rights granted to the The Good Death Society Blog.