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Making Death: A Narrative Medicine exploration

“When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.” — Paul Kalanithi, When Breath Becomes Air, 2016, 199

Paul Kalanithi appeared to die of a disease out of his control: his life unfinished, his career as a neurosurgeon on the verge of a launch that would not happen, his passion for writing confined to a final memoir at age 37, and his fatherhood of eight months barely old enough to crawl. And yet he tells us, his readers, that he has experienced a joy that “rests, satisfied.” How can we understand this experience of dying? I turn to Subject to Death.

On one evening each year, Bob Desjarlais enters my classroom, taking a seat at the seminar table, and opening himself up to the subject of death. This is a graduate course on “Narratives of Death, Living and Caring at the End of Life” for students in the Narrative Medicine program at Columbia University. For five years Bob, sometimes with his friend Karma, has shared with us his research on the experience and meaning of being “subject to death” in Hyolmo Buddhist society. For Narrative Medicine students – clinicians, patients, caregivers, advocates – stories are what enable them to enter into the experience of another, to be part of that “weaving of selfhood” through the terrains of illness, suffering, death, and loss. They seek the competence to attend to others, to represent the suffering of others, and to affiliate with those who are at the end of life (Charon, Chapter 7). Now, Subject to Death: Life and Loss in a Buddhist World shares the personal stories told to Bob of dying, death, and mourning in the family and the community.

In the seminar our attention is first drawn to the Hyolmo Buddhist concern with a good death. Few of us in class see our desire for a good death as part of our hope for a good rebirth, as the Hyolmo Buddhists do, but we, nevertheless, seek a “good” resolution of life at the end of life. For 80 percent of Americans, a good death means dying in our home, yet only 20 percent of us manage to end our life at home (Stanford, 2016). Like the Hyolmo, we do not want to die in the hospital with death mediated by technology, “hovering” between life and death until the time to die is decided for us by institutional forces (citing Kaufman, 38). In the hospital, for Hyolmo people, dying is disrupted: “Unable to die, a person is stuck between lives. The temporality of a good death is obstructed” (38). We discuss the definition of death itself, which, medicalized, becomes a static measurement, stripped of the process of dying.

The good death we seek – the death my students seek for their patients, and for those they love – has a universality. Philippe Ariès tells us that the “tamed death” dominated for centuries, and today we will recognize its basic elements as desirable. A good death is still one we can prepare for, perhaps sorrowfully, but with forgiveness for those who have harmed us. Surrounded by family and friends, we would say farewell, ask for pardons, give our blessings, and welcome a death without fear (Ariès, 9-10). This “tamed death” feels much like a good Hyolmo death. “Shyi lu yhabu shyisin,” he died in a good way of dying: not being a burden on others, dying at home with family members, not dying in fear or longing. The familiarity of these aspects of a good death is itself comforting.

Subject to Death asks us to think about this “putting together” of our dying by considering poiesis: dying as a kind of creating or crafting. In Western terms there is a dimension of controlling, of making our own, to dying. In 2000 a BMJ editorial on “A Good Death” offered 12 principles of a good death that included multiple ways of retaining control: over place of death, over pain, over who should accompany us during our dying, over when to say goodbye, and over what wishes we want respected after our death. “Control,” though, is a harsh word with a suggestion of exclusivity. The poiesis of cessation is not something to be done alone. Among the Hyolmo, friends and family help fashion dying by “unmaking attachments” (14). Semjha, we learn, is a matter of longing or desire (50). It exists within a person’s heartmind as a lingering “interest” in some aspect of the world. Something has gone unsatisfied, unsated. Something remains apart from the self, something unfulfilled in the dying person’s life. It is best to die complete, and thus to end the state of being. “I’ll die without any thoughts or feelings,” says one woman (53).

With this poiesis of cessation in mind, the class can revisit Paul Harding’s Tinkers (2009), a novel in which both order and chaos inhabit the mind of George Washington Crosby as he lives his last days at home, in the presence of family who come and go around him. For eight days, as the clock winds down, the storied threads of George’s life twist and turn “in an order he could not control” (18). “As he lay on his deathbed, George wanted to see his father again” (21), the father who had left home when George was twelve. The fragments of imagination and memory feel disconnected, but as with the clocks George painstakingly repairs, the parts make a working whole. The last thing George remembered in his dying was his father’s only visit when George himself was a young father, but that “imagining” was enough to feel a completion. Semjha, the longing for resolution of a relationship severed, was satisfied.

I also ask my students to think about Atul Gawande’s book Being Mortal (2014). We physicians, Gawande says, are taught to “save lives, not how to tend to their demise” (3). “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers” (9). Gawande goes in search of alternatives – ways that physician, patient, and family together craft a way of living and dying at the end of life. He learns to ask, “What makes life worth living when we are old and frail and unable to care for ourselves?” (92). A common thread in the responses he hears is autonomy, not the autonomy of acting alone, but autonomy that enables us to fashion our life and our death, accepting the help we need but continuing “to keep shaping the story of [our] life in the world” (146).

Most Americans never reflect on or discuss what gives meaning to life at the end of life, and how they want to die. Even with new Medicare reimbursement, physicians still do not talk to their patients about their wishes. Cardiologist Ravi Parikh, writing in the Washington Post, told the story of his patient who insisted on having “full code” recorded in his chart, which would result in having everything possible done to prolong his life should his heart fail or breathing stop. The patient was a man close to 90, with a history of cardiac disease, “events,” and treatment. Trying to convince the older man to change his code status to do not resuscitate (DNR) was futile, but asking what was important to his patient during this last period of his life led to a discussion of values, meaning, and priorities. Parikh learned that the patient wanted full code so that he could stay alive to meet his new great granddaughter, who would be flying to America from Ethiopia the next month. After the family left, the patient changed his code status to DNR, and together doctor and patient began to explore hospice care. Dying complete meant resolving this longing. Paul Kalanithi (2016) wrote about his decision to have a baby knowing that he did not have long to live: “life isn’t about avoiding suffering” (143), but about “a joy that does not hunger for more” (199).

Subject to Death lets us reflect on the poiesis of cessation in many of the narratives we read in class, stories of dying and stories of caring. In each memoir of caregiving we read, the selfhood of the dying and the selfhood of the caring struggle as they reach for a place in which together they will be creating an ending. Donald Hall recounts in diary-like detail the work he and his dying wife, Jane Kenyon, do when they come home to craft Jane’s death: there are poems to be edited, people to call, a funeral to plan, pain to relieve, suffering to sooth, and a lifeworld to complete. For the caregiver, crafting a good death is particularly difficult when the loved one has dementia and dying is characterized by “chaos” (Frank, 1995), not completion. Can a family say, “Shyi lu yhabu shyisin,” “he died in a good way of dying” (26), when the dying person is not mentally capable of accepting death? For the caregiver, the “ethics of care” involved in helping a person to die well may remain unsatisfied. There can be no co-crafting of a mindful death.

When I first asked Bob to share his work with us, I intended to enable students to attend to the experience of dying and death in another culture as otherness. But what we have all learned is a deeper and more complex attention, a kind of “narrative humility,” as my colleague Sayantani DasGupta has suggested (2008). The Hyolmo stories we heard were not objects to master “but rather dynamic entities that we can approach and engage with” (981). It is the connectedness of Hyolmo desire and experience with our own that enables my students to also hear the differences.

Subject to Death teaches us narrative humility by inviting us to enter into the experience of Bob’s Hyolmo friends, their families, and their communities, to be open to their stories. “This has not been an easy book to write,” we are told (241), and we know this must be true. For students who are, or will be physicians, or other caregivers, death should not be easy to write, and they appreciate the honesty. The personal struggle Bob experiences as he writes this book is one they know: how to “affiliate” with those who have shared their stories, and yet not be overwhelmed by the “seductive aesthetics of death” (239). The physicians and future physicians in the classroom reflect on whether they will be able not only to give care to the dying but to allow that experience to “shape how [they] engage in the world and relate to others” (241).

 

References

Aries, P. (1974). Western attitudes toward death: from the middle ages to the present. Baltimore, MD: Johns Hopkins University Press.

Charon, R. (2006). Narrative medicine: Honoring the stories of illness. Oxford, UK: Oxford University Press.

DasGupta, S. (2008). Narrative humility, The Lancet, 371, 980-981.

Gawande, A. (2014). Being mortal: Medicine and what matters in the end. New York, NY: Metropolitan Books.

Frank, A. (1995). The wounded storyteller: Body, illness, and ethics. Chicago, IL: U of Chicago Press.

Hall, D. (2005). The best day the worst day: Life with Jane Kenyon. New York, NY: Houghton Mifflin.

Harding, P. (2009). Tinkers. New York, NY: Bellevue Literary Press.

Kalanithi, P. (2016). When breath becomes air. New York, NY: Random House.

Levine, C. (2008, July 24). Married once, widowed twice, New York Times.

Parikh, R. (2016, April 18). When a doctor and patient disagree about care at the end of life. Washington Post.  [accessed 6/20/16]

Smith, R. (2000, 15 January). A good death: An important aim for health services and for us all,” BMJ, 320, 129–30.

Stanford School of Medicine: Palliative Care. Where do Americans die? [accessed 6/19/2016]

 

Marsha Hurst teaches in the Narrative Medicine master’s program at Columbia University and co-chairs the University Seminar on “Narrative, Health, and Social Justice”. She is co-editor of Stories of Illness and Healing: Women Write Their Bodies (Kent State University Press, 2007) and has written on palliative care, end of life, and narrative.


One Response to Making Death: A Narrative Medicine exploration

  1. Pingback: Book Forum––Robert Desjarlais’ Subject to Death: Life and Loss in a Buddhist World by Todd Meyers - Bioethics Research Library

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