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Place Names for Navigating Our Dying Territory

Identifying & naming our range of 21st century dying situations helps us aim for the deaths we want, and away from the deaths we don't want.

Photo of Bart Windrum
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Windrum's Matrix of Dying Terms is not a story although it's all about language. However, experiencing the Matrix can create story (hopefully many happy stories). Here's one that has a long future arc:

After experiencing a Matrix conference session, a forty year old palliative care doctor told me that she changed the way she counseled a dying patient-family. Her patient was dying badly. Already one leg had been amputated and gangrene had set in. The doctors were suggesting a further amputation. She said that formerly she would have counseled her patient and wife about the burdens of suffering. This time, she sat with her patient's wife and said simply, "your husband is dying" and explained what "doing everything" meant and engaged her in a conversation about letting go. The Matrix helped a doctor to better differentiate; helped one severely dying patient-family maximize what little peace may have been left in their dying time. I wonder how many dying people and family members' end-of-life experience will be different as a result of one doctor's experience with the Matrix.

I want to die peacefully. I bet you do, too. My family’s experience of each of our parents’ hospitalized demises was completely non-peaceful. There’s a substantial backstory there, but for now suffice it to say that those experiences led to Windrum’s Matrix of Dying Terms during my ensuing twelve years as an end-of-life reformer.

Words matter—their meaning shapes, and constricts, the boundaries of our thinking and hence our experiences. The absence of language—the lack of words—matters even more. Names matter. Without names to identify the real-world experiences that await us, we can’t easily describe what those experiences are. So we default to generalities. The problem is that although we decry in generalities, they rarely provide us enough motivation to act, in advance, so as not to get caught up in them down the line.

We can specifically name each dying situation throughout the full range of dying situations that await all of us. Naming them brings our choices into clear focus. That clarity is vital. It's even refreshing and uplifting (despite how sobering the reality of what’s named tends to be) because once we name the previously un-named, we are in a consciously better position to state what we want—and what we don’t want—far enough in advance to guide our choices and actions as we age, enter our demise, and die.

This entry ends with a suggestion for how to “try each name on for size,” to help us move the lessons Windrum’s Matrix offers out of our heads and into our hearts.

Windrum’s Matrix of Dying Terms emanates from my experience of each of my parents’ hospitalized deaths, my musings and research regarding my family’s failures and how to not fail again, and a strange insight.

The insight arrived as an unbidden thought that dropped into my mind one day in exactly this wording: “Eskimos have a zillion words for snow; how come we have only one non-euphemistic word for dying?” (Aside: in Alaska ‘Eskimo’ is an accepted term for the two types of native peoples there.)

Leaving aside an examination or comparison of northern and English languages’ words for snow, we in the developed world lack words to accurately depict the range of dying situations in our medicalized societies. The sole word ‘dying’ fails to identify them. ‘Dying’ fails to adequately prepare or stimulate us to examine their nature and likelihood.

Despite intrinsic goodness and value, today’s predominant guidance for dying well can inadvertently mislead us. Executing advance directives and assigning proxies are vitally important and we’d be foolish not to. Spiritual engagement, either formally (Buddhism) or informally (sage-ing) can help align our deep selves with our values. But, as I experienced, our world’s everyday systems strongly exert themselves; circumstances often overwhelm us, despite advance directives, proxies, and spiritual attunement.

We experience our world, in our minds and in our lives, through language. The lack of language distorts what we see and blinds us to what we need to see.

Imagine:  if the thousands of flowers had no names, and the only word we had for any and all of them was ‘flower’... How could we distinguish among them? How would we describe their differences? How could we specify bouquets?

Similarly, this one word — ‘dying’ — fails to map our dying territory. The features of our dying landscape, both natural and man-made, have gone unnamed. This is too indistinct. And into this void we’ve inserted a simplistic binary: we don’t want to die wired up every which way in an ICU, so we imagine some idyllic alternative. Unfortunately, idyllic alternatives do not manifest themselves. And it’s very hard to arrange one on the spur of some moment given the force of our experiences in everyday medical situations.

Some brief medical library searching revealed that the study of language of dying and death revolves around psychology. Windrum’s Matrix of Dying Terms, on the other hand, introduces new language.

I asked myself, what aspects shape the dying situations we find ourselves in? Two came to mind. First, Time (how much do I have? how long will this take?) I broke time into three basic durations: rapid (abrupt), endless (never-ending), and medically-managed (onset, progressed, endstage). Second, Control. I discerned five entities that control our dying situations: the world, mainstream medicine, machine medicine, we ourselves, and shared control.

Laying out Time and Control as a chart results in a grid. Where time and controls intersect I call “Landings”—as in, “where are you going to land?” In English the notion of landing somewhere is a common colloquialism and hence useful frame.

Landing names identify dying situations where some control dominates as time unfolds. Each landing name neutrally expresses each landing’s essential nature—which we will experience should we die in that situation. Once familiar with the Landing names we can ask ourselves with specificity, "do I want to die in that situation?" Our answer(s) ought to lead directly to two vital questions: "what must I learn about in order to increase the likelihood of experiencing (or not experiencing) this or that outcome?" And "where can I find that information?" Hint: one must look for several things: comprehensiveness and specificity. Note: the query and the answers found there probably will not be uplifting or pretty. Not denying death includes some serious grounds keeping in the end-of-life weeds.

Some Landing names are self-evident, some require brief explanation. Here are the dying situations the Landings name:

• Sudden Dying: due to worldly causes (“acts of god”, accident, homicide)

• Insleep Dying: the holy grail many people say they desire

• Erroneous Dying: related to deaths precipitated by medical error regardless of how long they take to play out

• EmergencyRoom Dying: dying under systematized, often mechanized duress in the ER

• Early, Midstream, Endstate Dying: mainstream medical disease management

• SlowMotion Dying: deaths that take so many months to years as to seem like dying never ends

• Delayed Dying: the moment one is placed on life-sustaining machinery, dying is delayed

• Suspended Dying: refers to being suspended between two states, living and dying, for a moderate period of time (the duration definition may differ for different people)

• Repetitive Dying: if sustained on life-support machinery for a long period of time, the equipment essentially resuscitates again and again, moment to moment

• Vegetative Dying: persistent vegitative state

• Suicidal Dying: the self-taking of a viable life when not terminal

• Released and Postponed Dying: refer to aid in dying at either an onset or progressed interval after terminal diagnosis

• Failed Dying: if one who ascribes to and desires self-directed or aided dying waits too long and cannot either effect or direct that, one has failed

• Collaborative Dying: dying having utilized the range of humane medical options available (Slow Medicine, palliation, hospice)

Some say that the Matrix is artificially complex. To which I reply: we all routinely master sets of seventeen names of one thing or another: 17  herbs and spices, 17 songs or bands, 17 friends or colleagues, 17 movies or actors, 17 software properties, 17 chemical elements, 17 medications, etc. When we’re into something it’s not hard to know and understand seventeen names. I’m not suggesting that the Matrix requires memorizing; to the contrary, it’s a reference tool. The Matrix is revelatory and, at best, may inspire us to act early for the outcome we desire.

Our best wishes and dying intentions can be and are routinely derailed under duress—I’ve experienced this, twice (and my small, cohesive family had advance directives and dining room conversations). By identifying and naming 21st century dying situations, Windrum’s Matrix of Dying Terms can help us set our resolve. What, exactly, must we do, and not do, to avoid dying situations we say we do not want to experience? That work may include, and likely goes beyond, advance directives and spiritual engagement. The best outcomes are that we act in advance to fully educate ourselves, and we become better sensitized so that when we find ourselves near, and in death’s crucible we make truly informed in-the-moment choices.

Windrum’s Matrix of Dying Terms benefits us by:

• naming situations that heretofore have gone unnamed

• offering a framework that encapsulates what occurs in our everyday practical world

• enabling us to clearly distinguish among outcomes that we previously lacked the language to differentiate

• helping us appreciate how much everyday practicalities shape our dying

• stimulating us to explore how to manifest what the world may require of us in order to die in situations that match our values—and sidestep situations that we truly wish to avoid.

What is a provocation or insight that might inspire others during this challenge?

To get out of our heads and into our hearts, try each Landing on for size. Sitting quietly, recite each landing name in turn. Say "I might experience Sudden dying." Breathe. Notice your feelings about this possibility. Exhale. Take a moment to clear, to "take off" the Landing. Proceed through each of the Matrix's seventeen dying situations, replacing "Sudden" with each Landing name. Reflect.


Join the conversation:

Photo of Jim

Great post. I tried to start poking at this idea that there are so many different end of life experiences in my post Reimagining (all) the end of life experience(s)  . You've given us a structure for that conversation that I think is really interesting. 

Photo of Bart

Hi and thanks Jim. Your post is interesting, too. I distinguish between circumstances and situations (altho the dictionary refers to them as synonyms). The Matrix refers to and captures situations, into which all manner of people can find themselves, bringing along myriad circumstantial details (rich/poor, this or that affliction, family cohesion or dissolution, etc). 

Matrix Landings are boundaries but some are interesting. If one lands in Failed dying one automatically gets bounced, likely to other Endstage landings. Some boundaries are fluid in that different folks with different tolerances will define the borders accordingly. In my experiences much of our failures is about not discerning far enough ahead of time to recognize what's happening (or not happening) at some given moment, always in an end of life crucible. The Matix helps us discern things in time to say "you know, I think I'd rather go here, or there..."