The earliest reference I could find to “the elephant in the room” story was by the wonderful 12th Century Persian poet Rumi. He wrote about wise men in a darkened room trying to describe an elephant in it. Since they had never seen such an animal, their description would be based on what they touched or smelled. I felt I was transported into that room during a recent international conference on death and dying.

An Academic View of the Good Death

A select group of scholars and practitioners from around the world were invited to present papers on making sense of death and dying, specifically, what would constitute a good death. I straddled both groups. As a hospice bedside volunteer, I’ve been a practitioner for the past eight years. But for twenty-five years before that, I was an academic, not in the area of end of life issues, but rather in communicative disorders at San Francisco State University.

I was hoping that this distinguished group of people would forge together something that was firmly grounded in reality, but framed within a unifying theory of death and dying. But that did not happen.

When Theory Doesn’t Match Reality

Academicians spoke about death as if it was something distinct from reality. Concepts of “authenticity,” “independence,” “the good death,” and “autonomy,” were discussed as if  they were philosophical issues looking for a home. Some practitioners. including me, questioned the relevancy of these concepts for understanding either death or dying.

For example, a patient of mine in the San Francisco Bay area who could no longer feed herself wasn’t concerned about “autonomy.’ She wanted to know that her husband was alright wiping the drool from her chin. “Self-image” for another patient who lost the ability to control his bowels didn’t involve esoteric issues of self-worth. His concern was how his wife reacted to changing an absorbent brief and cleaning his bottom.

“The good death” for those I served involved the fulfillment of needs that were as diverse as the patients I attended, and totally foreign to the concepts presented by many of the conference’s academicians.

As the discussions continued, I hoped that those who had very little contact with dying people would come to realize that their starting point of understanding was, to paraphrase Korzybski, the 19th century Polish philosopher and linguist, relying on a map to describe the territory of death and dying. But based on the questions asked of presenters, I didn’t feel that was occurring. What I heard were attempts to squeeze the reality of death into concepts as if it was a person attempting to fit into a pair of jeans that was three sizes too small.

And conversely, the questions asked by presenters who were practitioners (including me) indicated that we thought many of the concepts lived in universe parallel to what we experienced on a daily basis. I don’t think there was a collaboration of ideas. Academicians probably believed that those of us in the trenches couldn’t see the “bigger,” more sophisticated picture. Those of us who helped people die, wondered how it was possible for anyone to talk about death from a theoretical perspective.

The Reality of a Good Death

There is nothing theoretical about death and dying: It’s always individual, in-the-moment, and unique. Theorizing about it may be appropriate for academicians, philosophers, Priests, Rabbis, Mullahs, Ministers, Buddhist Nuns and Monks, and those whose belief in a religious or spiritual tradition is unassailable.

But if you want to know, really know about death and dying, spend time with someone who is experiencing it. Not quite the same level of knowledge as being directly involved in it, but significantly more relevant than theorizing.

Death is not a singular event. It spans time and pulls people into its inevitable progression. Reactions of people who are dying, whether it is to issues of self-identity, independence, or a good death, are always in relationship to how other people are reacting to them. Death is a community, temporal event, and of necessity, messy. Approaching it as something that can be logically analyzed and confined to just the person who is dying, is delusional.

(To read my poem Through an Old Sealed Window, that is related to this article, press here.)

15 Responses

  1. judy b.

    I imagine that those scholars’ ideas will fall away when death is more immediate for them, when thinking becomes moot.

    Reply
  2. Steven Evans

    Stan,
    Insightful as always. I thought I might offer s theory as to why there may not be fundamentally a theory for death [which might make my comment a meta-theory?]. In the context of death, there are two key perspectives. First, there is the perspective of the person dying. For him (or her), there is only the totally local specific case ” I am dying. It is I — I who lived this life, knew these people, laughed when I laughed, cried when I cried.” There can of course be no theory about one totally unique singular case. A “theory” if there were one would be just the person himself (or herself). So a “theory” makes no sense.

    The other perspective [or elephant in the room] relates to all the remaining living. There is an old [some say mystical] saying,”to save a life is to save the world.” Part of the meaning is that a person and his life touch all the people around them, who in turn are changed in some way, and they in turn touch or impact others, and so on like a ripple in a pond. Ultimately the whole world is connected with this life. To save it is to save the world.

    So similarly, at death, to lose someone to death is to lose the whole world. All the survivors are touched and suffer some loss in spiritual, emotional, social, economic, or other ways — and so too all whom they impact — so that the whole world is transformed. Hence any theory about the survivors would need to encompass all the world and everything about it. It would need to be a theory of everything — which again is not possible since a theory must address some subset of reality. Only all of reality can be a theory of itself.

    So for the dying, the event is totally “local” for which no theory is defined while for those left alive, they together are “non-local,” all connected, involving everything there is for which no theory can be made.

    Ergo — a theory of dying (in theory) really does not exist.

    So we return to your point — dying is a totally local phenomenon which should bring our attention to the specific person at hand. At the same time, those who are NOT dying all have this event [the death] in common, and by so doing, have some loss in common. As each reflects on this loss, each becomes a totally “local” phenomenon again, to be addressed one-on-one as we may do for the dying.

    Offered with palms together,
    Steve

    Reply
    • Stan Goldberg

      Hi Steve,
      Your comments are also insightful as usual. Let me expand a little on my concerns about the theory and practicality of dying. Theories, regardless if it’s in the area of what makes a good death, or how to better correct a speech misarticulation, should have at its core, empirical data. For example, if as a speech language pathologist my purpose is to design an intervention program for eliminating a “w” for “r” substitution, I need to have an understanding of the morphological aspects of speech production, the learning characteristics of a five-year-old, and how behaviors are shaped. With that information, I can develop a “theoretical model” of how to develop the behavior I want not only for a w/r substitution, but for other misarticulations in children.

      I think the same principles apply to understanding how to facilitate what has been called “a good death.” I need to understand what things have been shown to ease death and what hasn’t. Presumably, the best source of his data is the involvement with the deaths of people. If that’s not possible, then reading accounts of it becomes a substitute, but based on experience, a very poor one.

      A model of a good death (or even speech articulation) that is based on facts provides a foundation for expanding the usefulness of observations. However, if the model begins either with no data, or data that is inaccurate, you end up with a devise that is either inappropriate or harmful. Unfortunately, I’ve seen the application of faulty models in both communicative disorders and grief counseling.

      So for me, model building is never the initial point of constructing an intervention protocol,but rather an abstraction that ties together related observations. It was Hussrl, the early 20th century phenomenologist who spoke about “bracketing” phenomena–observing before judging. A lesson we call all learn from.

      Reply
      • Alan F Pye

        Hi Stan,
        (We have spoken at length recently, for which I am grateful.) A good death? Ah. My son was alive one minute and dead the next. In many ways that is a good death. No lingering, anesthesiac, pain-burdened, smelly, ugly ending but a sudden, instantaneous — even joyful (he was riding his motorbike at speed!) — departure from us who remain living.
        Is the very idea of a model for dying an academic trap? Do we really need to find common factors, cosmological rules or lowest common denominators so as to generalize a phenomenon that is universal for any living organism? Does any of that intellectualizing make sense of dying? I’m not sure that one can Understand the phenomenon at all. I have to say I am wary of reductionist approaches that attempt to yield an abstracted and thus comfortable (and therefore painless) principle, or even dogma. So I am with you in your reaction to Prague, I think!

      • Stan Goldberg

        Hi Alan,

        I agree with completely that using a reductionist approach doesn’t result in a better understanding of death, but rather an incomplete one. Death is more than the sum of its parts and since the parts are different for everyone (e.g., the importance of self-care), what you derive from a scientific analysis of one thing may be precise, concise (rarely in science) and logical. Unfortunately, the entity that is described doesn’t and will never exist. To me academic discussions of the principles of a “good death” are often more little more than general descriptions of beach wave dynamics. But I don’t know a surfer who would rely on them to decide if it was a good day to catch 10.

        Another point. I think there is a misunderstanding among both academics and non-academics about what constitutes a “good death.” In the Middle Ages it implied that the person who was dying had time to settle affairs and loved ones were able to prepare themselves for the person’s death. To me, it seems that there are two issues here. Time and community. I think preparation for the loss of anything (loved one, pet, ability, aspiration, etc.) is important for grieving and recovery. Viewing death as a community event acknowledges that death isn’t something that is not confined to the person who died. Your son’s death may have been “good” in terms of it’s quickness for him. However, as we both know, this was a tragedy for everyone connected to him–and still is.
        Take Care

      • Alan F Pye

        And perhaps that is the great conundrum — who would want what may be called a bad death (suffering, painful, undignified, long drawn out) for a loved one in exchange for the opportunities of time and community?
        You are right of course, a sudden death (probably painless, instantaneous) is nothing less than a catastrophe for the survivors of it. Even so, if he was energized, engaged, vibrantly alive at that very instant, then—since we all have to die—he died a good death and I can feel happy for him.
        Thank you for your thoughts, Stan. Very best.

  3. Henry Shen

    It takes me to a news report that big money has been spent on dying American patients, just to make them live a few days longer. In one of the stories, a daughter recalls what her mom said, “they sent me a psychiatrist, I asked why she is here, she said ‘cuz it seems you are stressed’, and I said, ‘of course I’m stressed, I’m dying!'”

    Reply
    • Stan Goldberg

      Hi Henry,

      Unfortunately, the humorous story is something that happens more than you would think possible. Even among professionals, there is a discomfort with saying to patients, “Yes, dying sucks and you have a right to feel lousy. Now let’s see what you can do positive with the time you have left.” Of course, not in those words, but definitely the same sentiment.

      Reply
  4. Lidewij

    Hi Stan,

    At the risk of singing the same song over and over… how about empathy? I hear academics downtalking pracitioners and practitioners downtalking academics. We need you both, and you need each other, and most of all, you need yourselves in order to make your work truely healing for us all. So where do I get to get you all together for a good old perspective taking session and reappreciation of all sides of the story?! 😉

    I’ve experienced what I would call a good death although the actual death was a violent murder (my sister). She came, after section had taken place, to our house where we’ve washed her, taken care of her and put her on a bed (well, a cooler that is). The next morning, I was the first to enter her room and felt immediately that something was terribly wrong. There was fear, anger and anxiety surrounding her body. As an academic, fourteen years later, I can talk about projection and attribution. Yet there and then, I knew what was going on and I knew it did not come from me. So our three days journey started in that moment. How do you help somebody die who had already physically died? I think we did it, and thus my statement that a good death can take place even after death has already happened.

    Thank you for your beautiful wholehearted blogs. Thank you for reminding me over and again of what is important in life. Thank you for being part of ‘sanity’. And thank you, because it must of course be a coincidence, I did not think of her all day or even all week, but she died 14 years ago exactly in this very moment.

    Lidewij

    Reply
    • Stan Goldberg

      Hi Lidewij,

      I agree with you about the importance of empathy. But in my service I’ve found that there are times when caregivers either don’t have it or can’t show it, and loved ones who need it, can’t wait for them to develop it. At a workshop Sogyal Rinpoche gave, he told a story about a person who was dying who said he didn’t care if anyone understood what he was experiencing–he didn’t feel that was possible–what he wanted was that they acted AS IS they understood.

      It’s been my experience that the milieu created by empathy benefits both the caregiver and the person who is being cared for. But unfortunately, it’s often missing, and there isn’t enough time enough for the caregiver to develop it before their loved one dies. This is especially true when their history is filled with unskillful acts.

      What I’ve found is that “understanding” is a reasonable goal for many caregivers. Empathy is terrific, but understanding is fine. I’m not sure I know how to reverse a history of a caregiver’s non-acceptance of others in months, especially when that person is in the middle of a riptide.

      My priority has always been to provide comfort to people who are dying. And as much as I believe empathy is something we all need to develop, it may not be a practical goal given the circumstances many people find themselves in.

      Reply
  5. Christina

    I lecture on death, grief and bereavement and have moved to add the term ‘socilly’ before ‘good death’ as it emphasises the contextualisation of the term. Effectively a socially good death could be someone who dies in war/ a martyr, for their country. In the Middle Ages it was someone who put their spiritual house in order (although of course purgatory evened things out a lot there) All deaths are personal but theorised socially. Contentious I know but a good death can also be certain forms of cancer regradless of hwo a patient dies, whereas a suicide is always a bad death. There is much written on socially good deaths but sadly little on socially bad deaths and especially how to grieve one; academic informs debate and this is an area we are marginalising – is it just too hard I wonder?

    Reply
    • Stan Goldberg

      Hi Christina,

      I applaud your efforts to expand the notion of death. By putting it within a social context the discussion has to entail not only the period of time leading to a death and what happens afterward, but also the understanding that death is a community event.

      Unfortunately, what I’ve seen happen often is that the “experience” of dying that is felt by the person who is dying is discussed in terms of concepts. That’s where I think the problem is. Death is such an individual event that concepts such as “the good death” do little more than distort the experience. And I think the same my be true even if we put the word “socially” in front of it. If there is one thing that could be used as an “umbrella” concept is the need for finishing things so that regrets at the moment of death are minimal.

      Take Care,
      Stan

      Reply

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