huff rationalistic: Bart Windrum's New Dying Terms Matrix

During August 2012 a simple thought dropped into my mind:

We have only one non-euphemistic word for dying (?dying?). Eskimos have lots of words for snow?wouldn?t it be useful for us if we had a set of new words for dying that accurately described the predominant patient-family experience in the various circumstances under which we die in our technological, denial-fueled age?

I called my friend and colleague Jennifer Ballentine, CEO of Denver?s Life Quality Institute and co-author of Colorado?s MOST legislation (Medical Orders for Scope of Treatment, similar to other states? POST or POLST enactments). Jenn?s at the center of all things palliative in Colorado. I asked her if any ethicist or palliative/hospice folks had offered up other names for dying and/or had published on the subject. She said not to her knowledge.

So I decided to do it myself.

(Aside: The first thing I learned is that?the ?many Eskimo words for snow? story is a myth. It?s an error that got picked up and magnified. Apparently their language?s construction is similar to ours. English is not exactly bereft of words that differentiate one type of snow from another (we have snow, slush, sleet, blizzard, etc.). Eskimos, to the same reasonable extent that we do, use a range of words to differentiate snow.)

Here?s what got me going: the current (2012) nascent United States conversation around end of life matters (EOL), while overdue, welcome, and necessary, is shallow and alarming. (Disclaimer: I am aware that millions of Americans come to EOL matters in their own time, and have great difficulty in doing so. I?ve been hard at this since my parents hospitalized demises in 2004-05 so I may be further along the curve.)?Yes: filling out an advance directive and talking with family members and proxies are vitally important steps which we must do. BUT, when these two are the only steps suggested, with no other information or disclaimer, the unspoken message is ?do this and you?ll be good to to, will die in peace.? I?ve addressed why this isn?t so in earlier pieces (they alone are insufficient in our complex world). The upshot is that people may be set up for a ?double whammy? if a loved one?s demise is not peaceful, or error- or trouble-free, despite having taken the advised steps.

The point of the matrix is to have a set of neutral, accurate terms to describe dying in our day and time so that we can, with intention, better aim for the death we want and away from the death we don?t.

Matrix Formative Steps ?Since both disease and dying occur in phases I opened a spreadsheet table and made some basic column and row header entries that sketched dying?s phases and the forces that control our dying experience. I then tried identifying words that?d accurately and neutrally describe each intersection, or cell. I went through four models: practical, emotional, experiential, and existential. These models resulted in, almost induced the use of, subjective words. Finally I decided to use a descriptor?model, and realized that the result would not be a set of synonyms but rather prefix words to add before, and use in conjunction with, ?dying.?

Windrum?s Early Twenty-first Century New Dying Terms Matrix

Step 1 (below)? shows the matrix?s basics. I identified fifteen essential situations under which death occurs. By ?situation? I mean not circumstances (there are more of those than we can count), but rather essential conditions. I call them ?landings.? The fifteenth is outside the boundaries of the core fourteen for reasons that I?ll explain when we get to it. Step 1 shows the three common phases associated with dying once disease has progressed to its terminal phase. By?Onset, Progressed, and Endstage I mean ?very early afer terminal diagnosis,? some weeks in,? and finally the period of active dying when the body shuts down in the days just before death.

Step 2 (below)? accounts for the other basic aspects that affect dying?s essential conditions. First, it?s possible to die when not terminal, and that needs accounting for. Second, it?s possible never to die even when terminal, or for dying to take so long (as in years) as to feel like never dying in a patient-family?s experience. Third, and most importantly, something or one always controls how we die. This step lists those controls.

Step 3 (below)? acknowledges each control?s essential characteristic(s), and introduces a question regarding Medical and Machine Endstage dying that we?ll pose more deeply further in.

Step 4 (below)? introduces important notions of legality and ethicality. Aiming for what we want to experience and away from what we don?t want to experience will require that we navigate, both in our hearts and minds and in the day-to-day world, issues (minefields) where the law and ethics reign, or even intrude. The cells marked ?it depends? account for two things: (1) Suicide is generally legal today although largely considered unethical. And the issue of (total) palliative sedation under Medical and Machine controls rides the fine edge of, and sometimes moves over into, physician-assisted dying and euthanasia. Without attempting at all to quantify occurrences, this must be accounted for, especially in light of what this step so clearly points out: that of all the landings, the only ones that are illegal and generally considered unethical are those under our personal control (the matrix reflects predominant conditions in jurisdictions withOUT death with dignity statutes).

Step 5 (below)?Beginning to fill in the matrix, I refer to these 5 landings as ?outliers??not because they?re rare or inconsequential; far from it. Rather, because they represent unusual or extreme landings. Under World control,?Insleep Dying?is the holy grail; who wouldn?t want to ?go gently into that good night?? Next come landings where we either die when not terminal or never die when terminal. Under World control, Accidental Dying?will be due to either natural causes, machine causes, or human causes (storm, car crash, homicide). Under Personal control is, of course, Suicidal Dying. Vegetative Dying?occurs under Machine control on life support technology. SlowMo Dying?refers to cognitive deaths that may unfold over, literally, many years? time, resulting in grown elderly who can do less for themselves than newborns and families stretched thin in never-ending existential stress and crises.

Step 6 (below)?Here are the core landings in store for us. Proceeding in order from a terminal condition?s onset: under Medical control we will experience Early Dying, Midstream Dying, or Endstate Dying. These are generally our defaults and don?t require much explanation. Machine control refers primarily to life support technology used as ongoing treatment. Under Machine control, since we would die without it, dying at the onset equates to Delayed Dying. Indeterminate Dying?refers to Sharon Kaufman?s use of the word in her book, ?And a Time to Die: How American Hospitals Shape the End of Life, where during a terminal hospitalization typically lasting about three weeks,?she concludes that death has been brought into life and the dying exist in some indeterminate state, neither fully alive nor dead (note: I have direct experience with this landing; my mother Ruth Greenberg was intubated for three weeks in an ICU after sudden respiratory failure). Redundant Dying?acknowledges that, for those on life support for months, their dying has extended to long that, really, they are dying moment to moment and being resuscitated moment to moment. This refers to Ken Wilbur?s definition of eternity of a ?series of endless nows.? If we wanted to exercise Personal control and ended our lives, when terminal, early on, I call that Released Dying. If we opt to hang on and self-deliver some weeks to months in, that?s Dignified Dying, to reflect the naming and purpose of death with dignity statutes. If we wait to long to self-deliver, passed the point of being physically able, that?s Failed Dying, in my view a terrible existential state.

Step 7?(below)?displays the entire Windrum?s New Dying Terms Matrix and accounts for an important fifth control and the fifteenth landing: Shared Intentional Dying. Palliative comfort treatment and hospice services, alone or together, when obtained proactively and utilized for more than just the few days of active dying, can go a long way toward helping patient-families die at peace (our emotional goal) by dying in?peace (our circumstances over time). For those both familiar and not familiar with these options, your familiarity and your unfamiliarity underscores their place in this matrix. Because they are most effective when utilized early and often I assign a single landing to this control. And, it?s important to note that Shared Intentional Dying differs from Personal Released and Personal Dignified dying: palliative and hospice will not go as far as individuals can under personal control since different ethics underly these choices.

Step 8?(below)?Lastly, an alternate, right-brained view of the the matrix?s fifteen landings, using a range of fonts to try to bring forth visually each landings? essence.