Ramblings

Medicine and Mothering on the Front Lines of COVID-19

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Two weeks ago I picked my kindergartener up from after-school basketball on a routine weekday afternoon. He bounded up to me, backpack in hand and asked, “Mom, do you know about coronavirus?” His teachers had discussed the viral outbreak and the need for good hand-washing skills. My budding epidemiologist went on to explain how the virus spread from bats to another animal to a human to another human to even more humans and so on. I tucked him into bed that night, marveling at his teacher’s skill in stressing hygiene and explaining the novel virus to a group of 6-year-olds.

Of course now coronavirus, or COVID-19, is all anyone is talking about, reading about. Coronavirus has uprooted my personal and professional life. As a family medicine physician working in Seattle, and as a mom to three young children, COVID-19 has consumed my day-to-day activities and workplace. As a primary care clinician and parent at a U.S. epicenter of the outbreak, there is no other word for home or work right now than upheaval.

I am also a writer, a creator of art. But I have struggled to find the time and emotional space to articulate and explore all the layered questions this crisis has presented to me—as a physician, as a mother to young children, as a creative being in this world. Fragments of essays, lines of poems, pour out of me as I wake with anxiety in the middle of the night, as I run around a deserted Seattle park, as my children beg to gather with their friends, as I discharge a clinic patient who pauses as she exits the exam room: “Thank you for being a doctor.”

As a participant of Harvard Medical School’s inaugural Media & Medicine program, I’ve recently been trained in writing Op-Eds for the public, in discerning misinformation and disinformation in the media about healthcare issues, in thinking creatively about how we can use podcasting or plays or poems to tell stories that make a difference to important public health topics. My classmates and I, healthcare professionals from all over the world whose projects focus on varied themes from mental health to vulnerable populations, from physician burnout to cancer awareness, suddenly find ourselves in the middle of a pandemic, sharing stories from our respective locations worldwide.

My work right now, though, is focused here, on my community: the people I hold most dear and the place I grew up in, I trained in, I live. My colleagues and community are at the forefront of this pandemic. I feel the rising sense of fear, the wave of overwhelm, the steady thrum of kindness.

For now, I offer this. Anyone who attended medical school with me knows I like to make lists. I approach a seemingly insurmountable task by compiling, organizing, and splitting it up into manageable components. Over the last two weeks, as local healthcare systems faced rapidly changing recommendations, confusion about suggested protocols, differing messages on testing capability, questions about adequate protection and supplies, as schools closed and family schedules were upended, I gathered information. Here is my contribution, my list of reliable resources and information for the worried, weary, and hopeful among you.

Despite my own swirling anxieties, I’m grateful for the work I’m trained to do, in medicine and in the humanities. I’m thankful for my colleagues—every aspect of the health care team—who are committed to serving our community’s most vulnerable, and each other, through an uncertain time. I’m bolstered by the parents sharing resources and tips about how best to support our children through unprecedented upheaval. This, I know: we are distilled in a crisis to the best, or the worst, that is in us. May we cling to the best, stand firm in sound science, look to compassion and art that sustains our souls, and encourage others to do the same.

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Narrative Medicine

Narrative Medicine Monday: Medicine and Its Metaphors

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In this excerpt in Guernica from Eula Biss’ book On Immunity, she wonders at the different metaphors in medicine. Though paternalism is clearly fraught with issues, if it “has fallen out of favor in medicine… how we should care for other people remains a question.” Biss explains Michael Merry’s distinction between paternalism that promotes good or prevents harm, such as “in traffic laws, gun control, and environmental regulations,” and the misuse of regulations that are “often used to justify a coercive use of power.”

Biss notes the alternative that is offered, autonomy, has caused “the paternalism of doctors [to be replaced] by the consumerism of patients.” Today’s physicians see the results of this shift in their daily work, responding to patients’ requests of “tests and treatments from a menu based on [their] consumer research.” In modern medicine, the consumerist culture is such that, as Biss notes, “doctors may be tempted to give patients what we want, even when it is not good for us.”

How do we address the problems for patients and for healthcare providers with both the paternalistic and the consumerist cultures? Biss turns to the idea that a more caring framework might be the answer. When her son requires a surgery her father advises, “‘If you’re going to get medical care you’re going to have to trust someone.’” Biss notes she usually consults her father first regarding medical issues—she trusts him. But the decision point regarding her son’s medical situation was not her father’s area of expertise. She realized she had to rely on another’s advice.

Biss tries every other treatment option for her son that was suggested by other specialists or friends. She does her research. But eventually her son’s symptoms worsened: “Then his breathing, already loud, became irregular at night. I crouched next to his bed, holding my own breath during the pauses in his breathing to gauge how long he was going without air. After particularly long pauses he woke, gasping and coughing. I scheduled the surgery.”

When the day of the surgery comes, Biss “was most hopeful not that the surgery would enact a miracle, but that it would simply do no harm.” Biss then requests to remain with her son as he undergoes anesthesia, which the doctor resists: “Studies had shown, he told me, that the body language and facial expressions of anxious mothers can cause children to fear surgery and resist anesthesia.” Biss persists, and she and the anesthesiologist come to a compromise: she will hold his hand but not be in view of her son as the medicine takes effect. When he wakes from anesthesia, Biss has not been summoned to the recovery room yet and her son calls out for her in panic. The experience is traumatic for both Biss and her son. All the anesthesiologist offers is that her son won’t remember “any of this,” though Biss replies, “I will.”

Biss’ father offers a new metaphor for modern medicine, that I believe both patients and physicians can envision: Dracula. Her father argues that “‘medicine sucks the blood out of people in a lot of ways.’” There are the financial aspects for the patient, and dire emotional consequences for patients, their families, and often for healthcare providers, who are suffering from an epidemic of burnout. Biss notes that her physician father himself is “fairly skeptical of medicine,” stating that “‘most problems will get better if left alone. Those problems that do not get better if left alone are likely to kill the patient no matter what you do.’” It is a grim declaration in many ways, but perhaps the vampire metaphor puts patients and physicians on a more appropriate plane: working together to resist the anemia of compassion and trust that threaten us all, and in so doing improve the care we give and receive.

Writing Prompt: What metaphor do you think is most accurate of medicine today? Can you think of another metaphor for the difficulties encountered by patients and healthcare professionals? Have you experienced, as a patient or as a physician, the issues with paternalism or consumerism in medicine? Alternatively, what role should skepticism or comfort play in medicine? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Bill of the Month

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NPR’s recent “Bill of the Month” highlighted a Montana man’s kidney dialysis that landed him with a bill of half a million dollars. The story describes how Sovereign Valentine, a 50-year-old personal trainer, discovered he was in kidney failure and in emergent need of dialysis. After discharge from the hospital, he and his physician wife returned to their small town in Montana and were told he’d need dialysis three times a week, with two options for treatment centers about 70 miles from their rural home.

They chose a center in Missoula, but soon after the outpatient treatments started, they were contacted by “an insurance case manager…warning them that since Fresenius was out of network, they could be required to pay whatever the insurer didn’t cover. The manager added that there were no in-network dialysis clinics in Montana, according to [his wife’s] handwritten notes from the conversation.”

Valentine’s physician wife attempted to get a quote on how much the dialysis might cost, but was unable to get a specific, or even rough, estimate. The NPR story highlights a law from 1973 that “allows all patients with end-stage renal disease like Sov to join Medicare, even if they’re younger than 65 — but only after a 90-day waiting period. During that time, patients are extremely vulnerable, medically and financially.” The outpatient dialysis center billed them $524,600.17. The NPR story notes that because of the law, there is “an incentive to treat as many privately insured patients as possible and to charge as much as they can before dialysis patients enroll in Medicare.”

Part of what is so disconcerting (and relatable for me personally) about this particular patient’s situation is that his wife is a physician, a person who would presumably have an advantage in navigating the system. She “knew it was important to find an in-network provider of dialysis.” Even with her extensive practical knowledge, she found herself and her loved one in an untenable situation.

Eventually, the patient’s wife contacted the state insurance commissioner and learned that there actually was an in-network dialysis clinic that had not turned up in other searches. Through this experience, Valentine discovered new insight into her patients’ challenges: “It’s very, very frustrating to be a patient, and it’s very disempowering to feel like you can’t make an informed choice because you can’t get the information you need.”

Writing Prompt: Have you had a time you were surprised by a medical bill, or found yourself ill and needing treatment when you didn’t have any health insurance? How did you feel? Consider writing a letter in second person to the insurance company, to the hospital, to yourself at that time, to the healthcare system as a whole. If you’re a medical provider, think of a time you tried to help a patient navigate the system regarding a medical bill. What was the experience like? Did anything surprise you? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: Hospital

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Poet and essayist Marianne Boruch illuminates a scene from a “Hospital.” Her poem provides a contrast of what an outsider might experience and the reality of those who work in such a place. She notes that “It seems / as if the end of the world / has never happened in here.” For patients and their loved ones, their worst day, their worst moment, often occurs in the confines of the hospital.

The narrator expects more, a kind of signal, of “smoke” or “dizzy flaring” but instead she waits, watching people go by as if on a conveyor. She sees “them pass, the surgical folk– / nurses, doctors, the guy who hangs up / the blood drop–ready for lunch…” They are going about their day, their work. She catches them at “the end of a joke,” but misses the punch line. Instead, it is lost in “their brief laughter.”

Boruch’s reflection reminds me of Mary Oliver’s lines in Wild Geese: “Tell me about despair, yours, and I will tell you mine. / Meanwhile the world goes on.” Boruch’s poem reveals the dichotomy of a hospital: while some can be devastated, others go about their day, wearing their designated uniform of “a cheerful green or pale blue.”

When I have been a patient, or the loved one waiting for word, the usually familiar hospital is completely transformed from how it exists for me as a physician. Boruch captures these parallel worlds in her poem, and gives the reader space for reflection on their disconnect.

Writing Prompt: Think of the last time you were in a hospital as a patient, as a visitor, as a medical professional. What did you observe? How did your experience differ based on the reason why you were there? Write for 10 minutes.

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Narrative Medicine

Narrative Medicine Monday: The Burnout Crisis in American Medicine

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A recent article in The Atlantic by writer and resident physician Rena Xu highlights the toll rigid regulations and decreasing autonomy takes on medical professionals.  In “The Burnout Crisis in American Medicine,” Xu illustrates the causes of burnout and the consequences of a system that makes it challenging for doctors to do what they were trained to do – care for patients.

In the article, Xu tells the story of a patient admitted to the hospital for cardiac issues. She is then found to have a kidney problem that is in need of a surgical procedure. Unfortunately, the anesthesiologist who tries to book the the surgery finds that the computer system won’t let him schedule it because the patient already had a cardiac study scheduled for the following morning. A computer system issue took hours of Xu’s time, all because “doctors weren’t allowed to change the schedule.”

Xu expresses understandable frustration that her “attention had been consumed by challenges of coordination rather than actual patient care.” I’m sure every medical professional can relate. In today’s healthcare environment, much of the work we do in medicine is clerical and administrative. Xu notes that “doctors become doctors because they want to take care of patients.” Instead, many of our “challenges relate to the operations of medicine–managing a growing number of patients, coordinating care across multiple providers, documenting it all.”

I liked Xu’s analogy of a chef attempting to serve several roles in a restaurant without compromising the quality of the meals. The restaurant owners then ask her to document everything she cooks. There are a bewildering array of options for each ingredient and “she ends up spending more time documenting her preparation than actually preparing the dish. And all the while, the owners are pressuring her to produce more and produce faster.” Any physician who has worked with the ICD-10 coding system can relate.

Xu notes the looming physician shortage in coming decades as the population ages and a large swath of physicians retire: a crisis in its own right. The only remedy is to improve “the workflow of medicine so that physicians are empowered to do their job well and derive satisfaction from it.”

Patients might not realize that “burned-out doctors are more likely to make medical errors, work less efficiently, and refer their patients to other providers, increasing the overall complexity (and with it, the cost) of care.” As patients, we should be fighting for our healthcare organizations to promote a culture and systems of wellness among medical providers. The care we receive depends on it.

Writing Prompt: If you’re a physician, what is greatest stressor in your daily practice? Have you had to make “creative” work-arounds, like the anesthesiologist in Xu’s article, just to do the right thing for your patient? If you’re a patient, have you considered how your physician’s well-being might affect their ability to care for you? What systemic barriers are in the way of addressing this crisis? Write for 10 minutes.

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