I don’t know why, during August 2012, this thought arose in 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-oriented age?
I called my friend and colleague Jennifer Ballentine, executive director 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, hail, powder, blizzard, etc.). Eskimos, to the same reasonable extent that we do, use a range of words to differentiate snow, and their language allows a few more of them than English does.)
Here’s what got me going: I find the current (2012) nascent United States conversation around end of life matters (EOL)—while overdue, welcome, and necessary—shallow and alarming. Yes: filling out an advance directive and talking with family members and proxies are vitally important steps which we must do. But when these are the only steps suggested, with no other information or disclaimer, the unspoken message is “do this and you’ll be good to go, and will die in peace.” The two steps alone are insufficient in our complex world; I’ve addressed why this isn’t so in earlier writings. The upshot is that people may be set up for a double whammy (to put it mildly) if a loved one’s demise is not peaceful, or error- or trouble-free, despite having taken the advised steps (which is exactly what my patient-family experienced twice in a row, only fifteen months apart, throughout each of our parents’ hospitalized demises, despite advance planning; enmeshment in the medical system has sensitized me to the dangerous consequences of unspoken or misunderstood language).
Windrum’s Matrix of Dying Terms™ provides set of neutral, accurate names to describe dying in our complex day and time so that we can, with intention, better aim for the death we want and away from the death we don’t.
• I am a lay person. Followers of this blog know of my authorship (the book Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization and the Colorado reform initiative The Option to Die in PEACE (Patient Ethical Alternative Care Elective). My outlook and definitions may differ from those of medical professionals.
• From here down this article has been submitted to the American Journal of Hospice and Palliative Medicine for consideration for peer review and possible publishing. The articles includes commentary, acknowledgements, and citations. The balance of this post below does not include those components.
Matrix Formative Process Striving for words to accurately and neutrally describe each situation, I worked in turn with language expressing dying’s practical, emotional, experiential, and existential aspects. These models proved limited, resulting in subjective words and duplicates. Finally I decided on a descriptor scheme and a set of prefix terms used in conjunction with “dying.” I present the Matrix in eight sequential steps, or builds.
Windrum’s Matrix of Dying Terms™
The Matrix Container: Builds 1 through 4 Windrum’s Matrix of Dying Terms names elemental dying situations in which everyone ends up, or lands. Each situation is defined by its phase (how close to or far from death one is and how slowly or quickly death occurs) plus its controlling entity. Legal and ethical aspects are part of many end-of-life situations and hence shade the Matrix. Builds 1 through 4 present these parameters.
Build 1: Sixteen Landings (below) Sixteen elemental situations exist within which death occurs. By “situation” I don’t mean circumstances (as many circumstances exist as do people), but rather fundamental conditions. I call them Landings — the intersection of a Phase and a Control (see build 2). Build 1 shows the three common phases of dying due to disease(s) after disease reaches its terminal phase. Onset means “soon after terminality begins”; Progressed means “some weeks or months in”; and Endstage means the final days, known as active dying, when the body shuts down.
Build 2: Phase Completion and Controls (below) Build 2 accounts for the other basic elements that shape dying. Completing the phases, Abrupt Dying: it’s possible to die suddenly without a terminal diagnosis, or precipitously due to medical error; and Never-ending Dying: it’s possible never to die even when terminal, or for dying to take years and feel like never dying in a patient-family’s experience. Most importantly, something or someone always Controls how we die. This build identifies the World, Medicine, Machines, Ourselves and Shared as controlling entities (henceforth several labels change slightly.
Build 3: Controls Characteristics (below) Build 3 acknowledges each control’s essential characteristic(s) relative to patient autonomy. Distinctions between Medical and Machine controls are a matter of degree. Example: if your oxygen needs can be met with a portable device you can be mobile, living more or less like everyone else. If you’re on a ventilator, intubated in the intensive care unit, you’re stuck there. In life, boundaries between Medical and Machine landings are fluid, due partly to natural developments and partly to medicine’s reflexive transitions from lifesaving to ongoing treatment.
Build4: Legalities and Ethicalities (below)
Build 4 introduces legality and ethicality according to predominant laws and mainstream values. Aiming for what we want to experience and away from what we don’t want to experience requires that we navigate issues where the law and ethics reign and even intrude. Green cells (light-gray in black & white renditions) indicate legal and ethical landings; gray cells (medium-gray in black & white renditions) indicate illegal and generally considered unethical landings. Green-gray cells (blended light- to medium-gray in black & white renditions) marked “It depends” account for two charged end-of-life scenarios: (1) Suicide under Personal control, although generally legal is considered unethical; and (2) Total palliative sedation administered under Thomas Aquinas’s Principle of Double Effect under Medical or Machine control paces the edge of, and sometimes morphs into, physician-assisted dying or euthanasia. Without attempting to quantify how rarely or frequently either occurs under cover of total palliative sedation, they must be accounted for in light of what this build clearly displays: the only landings that are illegal in most jurisdictions and generally labeled as unethical are those under our personal control. Note: see appendix at post’s end for notes about legalities and ethicalities.
Matrix Landings Named: Builds 5 through 8 Death may be immediate, precipitous, interminable, or unfold medically over a range of situations that most people experience as mainstream. Builds 5 through 7 present the dying terms in the matrix format. Build 8 presents the terms imaginatively in a format intended for initial parsing by lay audiences prior to working through the matrix builds.
Windrum’s Matrix terms are single words that prefix “dying.” Each term illuminates its landing’s salient experiential quality. Landings may be identified by a short or a long phrase:
• LandingName + “Dying” (everyday social use; e.g. Insleep Dying)
• Control + LandingName + “Dying” (contextually complete formal use; e.g. World Insleep Dying)
Additionally, meta-level phrases may be apt for generalizing:
• Control (+ Phase) + “Dying” (describing a demise’s meta context; e.g. World Abrupt Dying).
Build 5: Outlier Landings (below) I refer to these landings as Outliers not because they’re rare or inconsequential but because they’re abrupt or extreme. Under World control, Insleep Dying is the holy grail; many want to “…go gentle into that good night”; Accidental Dying is due to environmental, mechanized, or human causes. Suicidal Dying is under Personal control. Under both Medical and Machine control, Erroneous Dying originates with medical error (relating to ‘abrupt’ when medical error causes a precipitous, hastened descent from health no matter death’s subsequent timeframe); SlowMo(tion) Dying refers to demises that unfold over many years’ time, resulting in elders who are as helpless as infants and families who are stretched thin in existential (and perhaps financial) stress and crises; and Vegetative Dying originates under Machine control on life-support technology — the persistent vegetative state. Note that SlowMo Dying is a concept wholly different from geriatrician Dennis McCullough’s Slow Medicine as espoused in his book, My Mother, Your Mother.
Build 6: Core Landings (below)
Our default experiences occur under Medical control: Early Dying, Midstream Dying, and Endstate Dying.
Machine control refers to life support technology used as ongoing treatment. Because we would die without this intervention, dying at the outset under Machine control equates to Delayed Dying. Indeterminate Dying refers to medical anthropologist Sharon Kaufman’s use of the term in …And a Time to Die: How American Hospitals Shape the End of Life, wherein she observes that those who die within terminal hospitalizations (typically lasting three weeks) spend significant time in an indeterminate state, neither fully alive nor dead. Redundant Dying refers to prolonged life support where dying gets extended for so long that we can characterize it as dying moment to moment, again and again, and being resuscitated moment by moment, again and again.
Released Dying refers to being terminal and wanting to exercise Personal control to end life soon after terminality’s onset. If we opt to persevere and self-deliver after many weeks or months, that’s Dignified Dying, reflecting the naming and purpose of American Death with Dignity statutes. If we wait too long to self-deliver, past the point of being physically able, that’s Failed Dying — a terrible existential state.
Build 7: Windrum’s Matrix of Dying Terms™ (below)
The complete Matrix includes a sixteenth landing: Shared Intentional Dying. Shared control combines Personal and Medical controls with palliative treatment and hospice. Palliation and hospice services, when obtained proactively, can go a long way toward helping patient-families die at peace (our emotional goal) by dying in peace (our circumstances over time). Palliative services may be utilized alone, with or without hospice, or alongside curative procedures. Because palliative and hospice services are most effective when initiated early and utilized often I assign the control a single landing.
Intentional Dying differs from Released and Dignified dying: palliative and hospice providers will not hasten death, going as far, as fast, as individuals desiring Released or Dignified dying might (legality and ethicality aside) since different strictures underlie these pathways. And unless one has, through planning or luck, avoided the heavy medical intervention many say they don’t want, Intentional Dying will focus on more moderately managing it. Intentional Dying does not supersede or eliminate the need for and utility of Released Dying or Dignified Dying for those who desire these options.
The Matrix cannot illustrate shared controls’ hierarchy. While Personal and Shared controls share the ideal of the dying person in charge, by definition Shared control means potentially less freedom (even with more resources) than Personal control alone (probably with fewer resources). Even under Death with Dignity statutes control is shared as the system erects requirements and boundaries.
Build 8: Gameboard Dancefloor view (below) This metaphorical overview of the landings suggests that at the end of our lives we will land in a distinct “space.” This simplified view uses a range of typefaces to visually suggest each landing’s essence.
Appendix: Legalities and Ethicalities Notes
• In three of the United States (Oregon, Washington, Montana) personally-directed, physician-assisted death is legal by statute or by court decision.
• Although many people consider Never-ending Dying unethical, this viewpoint is not yet mainstream.
• Terminality’s definition has both a legal and medical component and is subject to ethical interpretation. Individuals desiring personal control over their dying may conclude that a personal definition and an ethic based on other than mainstream values applies to them.
• A legitimate viewpoint articulates that, when a person’s disease has reached terminality, self-deliverance is not suicide.
• In my worldview the phrase “assisted suicide” in the context of terminal illness is pejorative and ought to be stricken from use.
• Increasing personally controlled opportunities for dying peacefully requires that the Released and Dignified landings become legal.
• Voluntary cessation of eating and drinking, a personal choice typically made coincident with the body’s natural shutdown process, is a legal self-deliverance option in the United States.
Windrum’s New Dying Terms Matrix and images ©2012 Bart Windrum and Axiom Action LLC.