How we think about how we talk about how we care for the dying

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I’m going to lead off by saying much of this is speculative, based off of a few readings, some quick googling, and half remembered books from a political theory class nearly two years ago. If anyone reading this knows more, or has corrections, I would be grateful for feedback.

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Also, a bunch of pictures from a lovely hike in Howth

One of my main hopes in coming to Ireland was to look at the origins of hospice. In doing so, of course, I ended reading about an Austrian pyschotherapist.

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Ok, let’s move backward. Cecily Saunders was a British nurse, then academic, then doctor who developed the model of hospice prevalent in Ireland, the UK and the US. Critical to her work was the generation of a theory of total pain, or of the notion that pain originated from physical, mental, and spiritual sources, especially in the dying. The forerunner of this approach is Victor Frankl, especially in his book Man’s Search for Meaning.

Frankl confronted the two prevailing psychoanalytic models of humanity: Freud, for whom all all human action was a revelation of conscious or subconscious desire or Adler, for whom all human activity was in the pursuit of power. Consider how death operates in both models. In the Freudian, one is stuck with a Hobbesian death, “a feare common to all,” as death stands as the end of desire. Alternatively, with Adler, as we move closer to death, we lose our capacity to exert power. Both of these models turn an inevitable feature of human life into a meaningless doom.

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By contrast, Frankl assumed the fundamental purpose of all human experience and activity as a the creation and living meanings. He used an unlikely source for his optimism, Nietzche: “A man can bear any how given a sufficient why.” In other words, it becomes not a matter of the specific experience, but the understanding one has of it.

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Frankl was a Jewish survivor of the Nazi concentration camps. While there, he observed that “those who one morning, at five, refused to get up and go to work and instead stayed in the hut, on the straw with urine and feces. Nothing—neither warnings nor threats—could induce them to change their minds. And then something typical occurred: they took out a cigarette from deep down in a pocket where they had hidden it and started smoking. At that moment we knew that for the next forty-eight hours or so we would watch them dying.” They had ceased to view their life as it was lived as having any meaning in it.

By contrast, Frankl focused his efforts on two external meanings. The first was a manuscript describing his theory of psychotherapy, confiscated upon his arrival to the camp. The second, and much more important was his wife. Not the desire to see her again, though of course that was present, but his love for her alone, the fact that he did love her.

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It’s interesting to note how Frankl used Nietzche. Nietzche believed in the in the importance of internally generated meaning, always active rather than reactive. The great man (always a man) was self-generating, with the weak merely reacting to and perverting the meanings generated by the powerful. But for Frankl, those meanings, the sort necessary for ordering and moving through the world, are available and necessary for all. Furthermore, the purest expression of this power was often other-fixated, whether one’s loved ones or a discipline. Unlike Nietzche, where suffering is sometimes treated as valuable for its own sake, Frankl could not be considered a masochist. Suffering itself did not have meaning, but our response allowed us to add meanings to the pain, to state that we bore the pain with courage and did not allow it to overtake us. Generating meaning is not a power available only to the Übermensch, but instead a constant human process, not inherently for good or evil:

“We have come to know man as he really is. After all, man is that being who invented the gas chambers of Auschwitz; however, he is also that being who entered those gas chambers upright, with the Lord’s Prayer or the Shema Yisrael on his lips.”

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Where I’m trying to go now is to understand how Saunders interpolated Frankl’s ideas into the practice of hospice care. Frankl’s vision of suffering was of the whole, where at a deep level existential, physical and mental pain are representations of the same core anguish. By contrast, at least in approach, Saunders saw these aspects as separable. The physical pain could be managed through novel approaches toward medication, while the spiritual pain was approached through Catholic symbolism and the inclusion of chaplains within the care team.

I’m going to tentatively argue that at their core these distinctions have to do with a divided conception of the body and soul. In the Catholic/Western intellectual tradition there is a deep division between the body and the spirit, or for the more secular minded, the body and the mind. In this approach, it becomes intuitive to treat the pain from a sore on a patient’s hip as distinct from the mental stress of putting one’s last affairs in order from the existential angst of what “all of this is about.” There’s a lot of power in this understanding. It allows specialists care to precisely target a problem, rather than become overwhelmed by the totality of human suffering.

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No adult supervision

Except, of course, the stress of writing a last will and testament may be the same as the fear of the unknown after death, which may cause a listless depression where one generates a bedsore from laying in bed all day, which in turn calls to mind questions of theodicy. Conceptualizing these challenges as distinct from one another limits the ability to relieve the whole person. Furthermore, it misses how living with a life limiting illness shapes a person’s understanding of their life’s meaning. My sense of Frankl is that his conceptualization of a human as a creature that creates and practices meanings also implies a unified self, without a division between consciousness and physical being.

At the same time, again, the divided self approach is very powerful. Cecily Saunders revolutionized pain management by viewing it as a scientific problem approachable through a deductive, experimentalist approach. From a practical standpoint, no individual can meet all of the needs of all patients, and questions like the meaning in an individual’s life when facing death may have to wait until the body is stable enough that discussion is possible.

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Like most theory, this can all end up being an analysis of the angel’s footwork on a head of a pin, but, again like most theory, it gives me a map of what care for the dying may or may not do. My next couple weeks emphasize time visiting hospices and other care centers, and my hope is that this reading helps me better understand what I see. All good fun.

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