Narrative Medicine

Narrative Medicine Monday: Holdfast

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Poet and essayist Robin Beth Schaer writes of death and the necessity of touch in “Holdfast.” She starts by recognizing that we tend to leave the dead alone, they “are for morticians & butchers / to touch. Only a gloved hand. Even my son / will leave a grounded wren or bat alone…”

What is too fragile to hold on to? Schaer contends butterflies are “too fragile to hold / alive, just the brush of skin could rip / a wing.” She shares about a beloved friend who she never touched. They didn’t speak of her terminal illness or of “the days pierced by radiation.” There is a shrouding of her friend’s illness, a compartmentalization in an effort to protect and respect her wishes, but the result was an absence of physical connection.

Shaer concludes that “We should hold each other more / while we are still alive, even if it hurts.” She notes that baby monkeys prefer touch over a more caloric type of nourishment. I remember this study from my college psychology days. It speaks to that which we seem to know as young children, forget, and relearn over time: holding fast to each other is what may matter most in this world. Shaer, like many of us, finds herself agreeing with the baby monkeys: “I would choose to starve & hold the soft body.”

Writing Prompt: Have you had a friend or patient or loved one who was too ill or seemed to fragile to touch? Do you think touch can have a healing effect or that lack of touch can be detrimental? How have you seen this manifested in your life or a patient’s life? What are the different ways we hold on to each other, both literally and figuratively? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: What I Learned Photographing Death

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Caroline Catlin shares her riveting story of how photographing those with terminal illness gave her perspective about her own cancer diagnosis in the New York Times’ “What I Learned Photographing Death.”

Catlin volunteers with Soulumination, a nonprofit organization that documents moments between critically ill individuals and their families, including the end of a child’s life. As I also live in Washington State, I had heard of this remarkable organization and the unique and thoughtful service they provide. Catlin’s piece, though, also reveals the perspective of these volunteer photographers. As Catlin describes, her role is to enter a room “ready to capture the way that love honors the dying. Witnessing these small moments helps me come to terms with my own mortality.” Her experience echoes that of many who work in the medical field. She too is a kind of caregiver for these families, wielding a camera rather than a stethoscope.

This young writer and photographer describes how in October she herself became a patient, eventually being diagnosed with malignant brain cancer. Catlin highlights how, since her diagnosis, she’s bonded with the people she’s photographing in a new way, including a teenager who shared mutual baldness: “The fact that I am sick and young has helped me form new connections with the people I am photographing.”

Catlin describes photographing the birth and death of a baby who was born with a condition that wasn’t survivable. She writes with heartbreaking clarity how “[h]e was perfect, but he did not cry,” how she captured “[h]is arm…gentle across his mother’s face — I clicked the shutter to save this gesture.”

Catlin is clear on her purpose in doing this difficult work: “When I am in those rooms, I am present with the sole goal of finding the moments within grief that feel the most gentle and human.” She also has discovered moments that speak to her own confrontation with mortality, such as when a child cries over the loss of his sister, then goes on to play near her body. She recognizes the resilience that exists in this world, that her friends and family “will also continue to live on if I die too soon.”

In the end, Catlin’s revelation is that “grief is centered not in pain but in love.” This is the lesson that she shares with us, the encouragement that “in our most horrific of moments we are met with small pricks of bright light, piercing and strong.”

Writing Prompt: In this piece, Catlin expresses how her work with Soulumination gave insight into her own experience with cancer and facing mortality. If you’re a medical provider, what has your work revealed to you about your own mortality? Alternatively, think about a time you stepped into another person’s story, during a particularly challenging time, either as a friend or family member or stranger. What did you learn from walking alongside that person, listening or observing? Write for 10 minutes.

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Narrative Medicine Monday: My Grandmother’s Body

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Author Anna Leahy writes about “My Grandmother’s Body” in Sweet, an online literary journal. Leahy describes the funeral director, who arrives when called, wearing “his funeral-director suit.” The professional Leahy witnesses is experienced, noting “the stairs’ ninety-degree turn / without changing pace.” The director asks “if he might / lift her himself to carry her downstairs” and Leahy finds a kind of comfort in this. She thinks, “What a relief / to think of her last moment at home, cradled / in the man’s arms.”

Leahy’s poem is a snapshot of a moment and a man, revealing the funeral director’s practicality and reverence for his work and the relief this provides for those who love the deceased. We often reflect on the last moments right before a person dies, but Leahy’s poem, like Lisa Knopp’s “Leaving the Body,” focuses instead on those just after: the weighty finality, the people who interact with the body and the importance this holds for those still living.

Writing Prompt: Have you been near a dead body, either of a loved one or of a patient? What was the experience like? How was the body retrieved, and to where? How did you feel about how this was accomplished? Alternatively, think about your impressions of the funeral director as described by Leahy. Consider writing the scene from his point of view. Write for 10 minutes.

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Narrative Medicine Monday: Ikiru

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Today’s Narrative Medicine post highlights a first: a movie. As part of preparation for this week’s Columbia Narrative Medicine Workshop, I watched a 1952 Japanese film, Ikiru. This movie, directed by Akira Kurosawa, outlines the life and death of a man with end stage cancer.

I happen to also be facilitating a Literature & Medicine gathering this week, where the topic is “Confronting Mortality.” In it, we are reading Tolstoy’s novella “The Death of Ivan Ilyich,” which similarly shows a man facing a terminal illness and wrestling with the meaning of his life and the nature of his painful death.

In Ikiru the protagonist, Mr. Watanabe, has not missed a day of work in 30 years at the same tedious government job. The narrator notes that “he’s only killing time, he’s never actually lived.”

I’m certainly not a movie critic, but several things stood out to me, looking at this film through a narrative medicine lens. First, his physicians insist on withholding the terminal nature of Mr. Watanabe’s illness, stating it’s a “mild ulcer” only, even when Watanabe begs them for the truth. This scene reminded me of a panel on cultural issues in bioethics I attended many years ago. On the panel was a bioethicist from Japan, and he explained the cultural influence of withholding the true prognosis or even diagnosis of an illness from a loved one; that a physician might deliver a terminal diagnosis to a patient’s family member rather than to the patient themself.

We get flashbacks in the movie to understand the central character more. His wife died when his son was young and he never remarried. Although they live together still, Watanabe and his son have a difficult relationship; they struggle to really communicate and Watanabe in fact is never able, despite several efforts, to actually confide his diagnosis and angst to his son.

Mr. Watanabe comes across a stranger who he asks to show him “how to live” and they gamble and dance and drink, but ultimately he finds little lasting pleasure in these endeavors.

The central character then turns to an old colleague, a young woman, trying to decipher her vitality, her zest for living. Through this interaction, he resolves to get a park built for the community. In the end he succeeds, battling the bureaucracy he was a part of himself for decades. It seems the completion of the park gives the dying man some semblance of peace, a legacy solidified, which produces the meaning he was struggling to find.

Writing Prompt: At one point in the film, Watanabe tells a colleague “I can’t afford to hate people. I haven’t got that kind of time.” What are the different ways you’ve seen patients who are terminally ill react to facing their limited time? Did they give up hate? Or something else? In Mark Doty’s poem “Brilliance” the patient initially gives up investing in anything he can’t finish. Why do you think Watanabe decided that the playground would be his last project, his last investment in what little energy and time remained? Write for 10 minutes.

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Narrative Medicine Monday: Trying to Help

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Poet and physician Dianne Silvestri outlines practicalities near the end of life in her Hospital Drive poem, “Trying to Help.” She begins with an entreaty: “Don’t forget when I die” and from there imparts instruction. She implores the reader “Remember the penciled page … that lists all important numbers.” She both instructs, but also attempts to absolve of any guilt: “It’s okay if no one peruses / my binders, journals, and files.” In the end, there is the sincerity of a small request, that “if you resume dance lessons, / please miss me … a little.”

Silvestri’s blend of instruction and request is both practical and wrenching. The narrator is preparing their loved one for that which cannot be prepared for. Her words are both freeing and binding. They offer solace in a hopeless situation.

Writing Prompt: Have you had a loved one or a patient who reacted to dying similarly to the narrator of this poem: putting things in order, advising their loved one about practicalities? How was this received? Who do you think the narrator is trying to help? Write for 10 minutes.

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Narrative Medicine Monday: Leaving the Body

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Author Lisa Knopp shows how we can be drawn to the presence of a body even following death in Hospital Drive‘s “Leaving the Body.” After her mother dies, Knopp lingers in her hospice room, asking to stay as a woman enters to wash her mother’s body and ready her “for the people who are coming to pick her up soon.”

Knopp initially wonders about “the point of bathing my mother, since her body will soon be ash.” The nurse’s aide speaks to Knopp’s mother as she wipes her face and arms. Knopp finds this “comforting, this informing my mother of what’s about to be done to her, since I can feel that something of her is still here.”

When the aides remove the woman’s gown, Knopp is filled with wonder at her mother’s naked body. “Even though she would feel shamed by my scrutiny, I want to savor and memorize the details.” This body holds memories for Knopp, the substance of a mother-child relationship, connection: “I know their shape so well: large knee bones, slightly bowing calves, like those of her mother, and thick ankles. Just below her right knee on her inner calf is a blue vein, an inch or two long that has been there as long as I can remember.”

In these moments right after her mother’s death, Knopp finds herself “starving for her physicality” and tells the aide she’d like to touch her mother. She kisses her forehead and strokes the top of her head and wonders, “What is it that I’ll be missing now that my mother’s heart has stopped beating, and she’ll soon be turned to ash?” Her mother has died, but Knopp is still drawn to her physical body, the familiarity of her mother’s form that will cease to exist. Knopp shares that her greatest regret will be that “we didn’t spend more time in each other’s physical presence” and that this final sponge bath is her “last chance to see and touch and smell my mother, flesh of my flesh, my first home.”

Knopp recalls all of the beautifully mundane things she and her mother chatted about on the phone, though they rarely discussed her cancer or the grander questions Knopp yearned to ask her dying mother. The loss Knopp highlights in her essay isn’t so much about the flesh itself, but more about her experience of her mother that was contained in that body: her “voice, words, thoughts, laughter, and silences.”

Knopp reflects on the waning importance of physicality in our modern world, how the dean of her college encourages faculty to have more screen time and less face time with students, how so many interactions with friends are via social media and not in person.

At the end of the essay, Knopp combs out her mother’s hair, braids it with care and cuts a lock of hair as a token. Knopp is unsure what she will do with the lock of hair, but the gesture seems satisfying in the moment, keeping “more than just memories of her body” before they wheel her away.

Writing Prompt: If you’ve been present with a dead body, either a loved one or a patient, what did you experience while in that space? Was it difficult? Healing? Both? Did you feel drawn to touch the body, as Knopp did? What are your thoughts about Knopp’s observation that we spend significantly less time face-to-face? How do you think spending less time in the physical presence of others might affect us? Write for 10 minutes.

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Narrative Medicine Monday: Brilliance

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Poet Mark Doty’s “Brilliance” shows a dying man changing his perspective near the end of life. In Doty’s poem, the man has “attended to everything, / said goodbye to his parents, / paid off his credit card.” He gives away his pets, finds the risk of owning too great, realizes that he “can’t have anything.” When someone suggests he get a bowl of goldfish, he replies “he doesn’t want to start / with anything….” For just a moment, the man allows himself to imagine the goldfish he might like: “hot jewel tones, / gold lacquer.” The fantasy, though, is fleeting because “I can’t love / anything I can’t finish.” Eventually he recants that decision, saying “Yes to the bowl of goldfish. / Meaning: let me go, if I have to, / in brilliance.”

Writing Prompt: Have you ever been at a place in your life when you didn’t want to start with anything new? What prompted that feeling? If you’re a medical provider, think of a time you’ve seen a shifting perspective in patients near the end of life. Write for 10 minutes.

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Narrative Medicine Monday: How Storytelling Can Help Young Doctors Become More Resilient

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Physician and author Dr. Jessica Zitter shows “How Storytelling Can Help Young Doctors Become More Resilient” in her recent essay in the Harvard Business Review. We know that this issue is vital to increasingly stretched and stressed medical providers, the consequences of which are discussed in previous Narrative Medicine Monday posts here and here. I wrote a short piece in Pulse for their “Stress and Burnout” issue that outlines a typical day for a modern primary care physician and have also studied and taught narrative medicine as a tool to better care for our patients and ourselves. Zitter has a unique perspective on the particular challenges for physicians and patients in end of life care, given she is board certified in both critical care and palliative care medicine.

Zitter addresses this issue through a “new program which uses storytelling to help young doctors reflect on how they handle the emotional and psychological toll of caring for suffering patients.” She opens up to a group of new physicians about running the code of a young woman in the ICU, the resistance to letting a patient go, even when nothing remains other than suffering: “We are expected to be brave, confident, and above all, to never give up.  And all the more so in particular cases, such as when a patient is young, previously healthy, or has a condition that appears reversible on admission. And in cases when our well-intended but risky interventions might have actually made things worse, it is almost impossible to let go.”

When the experienced Zitter suggests that they instead institute pain management and sedation rather than attempt resuscitation the next time her heart stops, the physicians-in-training bristle. She questions a culture that promotes doing everything, including “this technique, that intervention, a whole host of options that would never have saved this woman.” Zitter admits she gives in to the other physicians, decides to fight “to the end, the way real heroes do.” The result is tragic. “The patient died a terrible death.”

Zitter reflects on this experience and shares it in the hope that it will help other young physicians who will certainly encounter the same, given that our culture and medical training makes it so “we often feel unable to question or diverge from scripted approaches — ones which may actually cause more suffering than benefit.”

To combat this, Zitter looks to storytelling, asserting that “[d]ata show that the use of stories to process the challenging experience of being a doctor increases empathy, enhances wellness and resilience, and promotes a more humanistic health care culture.” After Zitter shares her story with the group, others begin opening up about their own experiences and a “genuine conversation proceeded, one which addressed the emotional pitfalls and psychological challenges of this work.”

Zitter is also part of a 2016 Netflix documentary called “Extremis.” This short film takes a hard look at the grueling decisions patients’ families, and the physicians who inform them, make near the end of life in the ICU. In it, you can appreciate the need to “provide safe spaces for healthcare professionals to reflect on and process their own suffering. Then we will be fully available to do the hard work of patient-centered decision making in the moments when it is really needed — at the bedside of a dying patient.”

Writing Prompt:  Have you had to help make decisions for a patient who is critically ill in the ICU? What issues came up? How was your interaction with the medical team that cared for your loved one? Alternatively, consider watching the short documentary “Extremis” and write about a moment that struck you or perhaps changed your way of thinking about end of life care. If you’re a medical professional, think of a time you witnessed an end of life situation when the patient experienced more suffering than was necessary. Do you agree that our culture contributes to performing “risky interventions” that “might have actually made things worse,” because we insist on fighting “to the end, the way real heroes do?” How do you think sharing such stories might promote wellness? Consider writing about a challenging situation from the perspective of the attending doctor, the resident, the patient, the nurse, the family member. Write for 10 minutes.

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Narrative Medicine Monday: On the Eve of My Mother’s Dying

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Writer Peggy Duffy’s flash nonfiction piece in the latest issue of Brevity, “On the Eve of My Mother’s Dying,” is a snapshot of her mother’s last days on hospice.

Duffy opens with the assertion that those who work in hospice “coordinate.” In my experience, both as a physician and as a family member, caring for those at the end of life, this verb rings true. The hospice people coordinate all the details of transport and durable medical equipment and adjustment of medications for comfort and, ultimately, Duffy realizes, “my mother is actively dying, and they strive to coordinate that too.”

Duffy’s father is upset they are not coaxing his wife into eating, despite her being unresponsive. The social worker explains to him “that unless my mother opens her eyes and asks for food, unless she can swallow, she cannot eat.” Duffy understandably struggles with her father’s resistance to accepting why they can’t give her mother water to drink: “Not long after I leave, he calls. Why won’t they give her water? She can’t swallow. What about on a teaspoon? You have to swallow even the tiniest amount of water. How can she survive without water? (Pause) She isn’t going to survive. I remind him she signed an advanced directive years ago when she was still lucid and knew what she was signing.”

Duffy is surprised at the stretching of time in the final days of her mother’s life: “I can’t work, can’t think, can’t sleep. I never knew dying could take so long.” If you’ve cared for a loved one on hospice, did you experience the same distortion of time as Duffy?

The piece ends with a touching, and surprising, kiss from Duffy’s mother: “Something long dormant stirs beneath my chest where my heart lies. I lay my head on her chest where her heart still beats.”

Writing Prompt: Have you had difficulty explaining any aspect of end of life care to a spouse, child or parent of a dying patient? Often loved ones have discussed clear wishes of what they would like done, and not done, when nearing the end of life. When it comes time to actually carry out actions according to these wishes though, this still can remain a painful process. Have you experienced this first hand? Write for 10 minutes.

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Narrative Medicine Monday: In Life’s Last Moments, Open a Window

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British physician and author Rachel Clarke advises in The New York Times that to care best for our terminally ill patients we should, “In Life’s Last Moments, Open a Window.” Dr. Clarke relays the story of a patient dying of cancer who was nonverbal but clearly in anguish. “We tried talking, listening, morphine. His agitation only grew.”

Clarke initially questions if the “sheer vitality of nature might be an affront to patients so close to the end of life — a kind of impudent abundance.” Instead she finds, as in the case of her patient with tongue cancer who merely wanted his door opened wide to the adjacent garden, many patients develop an “intense solace… in the natural world.”

It is the song of a blackbird outside her window that gives one of Clarke’s breast cancer patients perspective that even “[c]ancer is part of nature too, and that is something I have to accept, and learn to live and die with.”

Clarke shuns the idea that end of life care needs to equate to a “dark and dismal place.” Instead, she contends that what should dominate hospice “is not proximity to death but the best bits of living.”

Writing Prompt: Clarke’s patient Diane notes that cancer is a part of nature. What are the implications of this statement for you as a medical provider, as a patient, as a loved one? When you’ve been ill, have you found solace in nature? Write for 10 minutes.

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