On the phone with a close friend I vented about a homeless patient of mine who had a stigmatizing health history and whose documentation overflowed with pejorative language; scanning through the notes as I prepared for my palliative care consultation, I counted “noncompliant” six times in just one paragraph from one specialist. The term “noncompliant,” with its notion of “white-coated police officers” as authoritarian monitors of patient behavior has been considered suspect and insensitive patient care language for years (Lowes 46-47). The slights and judgments continued: despite “maximal resources,” wrote a member of the care team, the patient’s condition progressed. It’s a grotesque healthcare Mad Lib that inserts “maximal resources” and “homelessness” and “dying” into one patient’s story. Stony stares met my plea during one multidisciplinary meeting that we strive for nonjudgmental language usage in this patient’s electronic health record. My ire escalating as I described this hospice-eligible patient’s discharge back to the streets, my friend interrupted me: “Your idealism is back,” she said quietly. “I watched it bleed out of you during COVID. And it’s back.”
That got my attention.
Prior to my work as a hospice and palliative care consultant, I took care of patients in the rural Midwest as a hospitalist, a career highlight until COVID descended. This friend had accompanied me through the pain of a COVID patient family member’s death threat against me for not ordering an unproved antiparasitic that was not even on our formulary. She held my hand over the socially distant phone lines when once collegial relationships among my healthcare teammates broke down over disagreements about face masks, vaccinations, even the existence of COVID.
Could she be right? Had I reclaimed the fire in my belly? Or, was I experiencing a kind of idealistic delirium, a surge of social justice activism brought on by a particularly callous plan of care for a patient nearing the end of their life?
Medical educators at the University of Texas Medical Branch in Galveston had a hunch that idealism in medical students could be nurtured through an international elective. From 1997 to 2005 they took 66 pre-clinical medical students to work in a rural health clinic in Nicaragua for three weeks. Post-elective questionnaires showed an increased awareness of how global, cultural, and socioeconomic forces impact health. Themes of humility, compassion, and teamwork peppered their responses. Many of these students continued volunteer and advocacy work after the elective. Such idealistic pursuits “traditionally include relief of suffering and improved quality of life for all humankind, and are measured by volunteerism, service to underserved peoples, and concern for the health of society as a whole” (Smith and Weaver S32). Fulfilling those goals often seemed impenetrable while caretaking COVID patients. I yearned to do better, especially with care at the end of life.
As I began a hospice and palliative care fellowship, I left hospitalist work behind. And as my friend so astutely noted, my idealism had atrophied amid the fear and the chaos of a world bludgeoned by the spiky proteins on what many wrote off as a simple cold virus. My moving on to a new specialty was in part an attempt to wall off this part of my life—like a contained abscess. But I had also moved to another state. Experiencing so much change began to feel akin to study abroad as I explored the tenets of idealism described above, immersing myself in explorations of suffering and quality of life.
Unfortunately, idealistic struggles within healthcare certainly pre-date COVID. In a 2018 STAT article, Talbot and Dean attributed the assault on idealism in healthcare to the “moral injury” that follows when well-intentioned healthcare workers are gutted by a healthcare system that values profits over people, leaving clinicians “wounded, disengaged, and increasingly hopeless.”
While hardly immune from the struggle to reconcile a profit-driven healthcare system with the reality of performing compassionate patient-centered care, my own experiences with insurance precarity sharpened my awareness of unjust healthcare access. For the first 10 years of my marriage, my partner lost his job or had to change jobs every 18 months due to mergers, buyouts, takeovers, restructurings, downsizings, and bankruptcies. I went through a couple of those transitions in my own work during that time. Every aspect of our personal, professional, and financial life had been impacted and shaped by the harshness or whimsy of those occupying the C-suite. So my eyes were already saucer-wide about the challenges, limitations and constraints of the corporatization of healthcare well before I purchased my first stethoscope and signed on for jaw-dropping loans—at the relatively old age of 35.
While my idealism might have waxed and waned from time to time prior to COVID, it still persisted. Ultimately, my tipping point arrived, perhaps surprisingly, not from the reckoning with an unjust healthcare system during a global infectious disease crisis, but from the dissolution of the patient and co-worker relationships that made fighting for the right thing and doing the right thing in our problematic healthcare system so worth it.
Now please suspend your disbelief that during a still moment in the midst of the global street fight that COVID unleashed, I heard a voice that said I should study medical humanities and that 30 seconds later I found an online master’s program to do just that. Over the course of two years, the first year as a hospitalist and then a year of fellowship, I clawed my way toward solace through a well-worn path—as a dutiful student. Grappling with health care policy and bioethics, examining the hidden curriculum and end-of-life care, and engaging with illness memoirs and graphic medicine brought some relief.
No doubt this was an extreme, impractical, and privileged path. And one I would not have traded for anything. After all, what about any of this is not extreme? The extremity of preparing for a global pandemic, of losing millions of lives, of pretending that healthcare services are like other types of commodities, and certainly the absurdity of discharging a dying patient to a homeless shelter.
A 2021 survey of healthcare workers in Turkey found that high levels of pandemic stress were associated with less optimism and social connection and increased burnout (Yıldırım et al. 5768). From my reclaimed idealistic perch, it seems pretty obvious, pretty intuitive, that an infusion of the humanities during a time of downtrending hope and ongoing isolation is part of the remedy. Not to mention the bearing witness from a friend who—through my flagging idealism—always had my back.
Works Cited
Lowes, Robert. “Patient-Centered Care for Better Patient Adherence.” Family Practice Management, vol. 5, no. 3, 1998, pp. 46-7, 51-4, 57.
Smith, Janice K., and Donna B. Weaver. “Capturing Medical Students’ Idealism.” Annals of Family Medicine, vol. 4, Suppl 1, (2006): S32-7; discussion S58-60. doi:10.1370/afm.543
Talbot, Simon G., and Wendy Dean. “Physicians Aren’t ‘Burning Out.’ They’re Suffering from Moral Injury.” STAT, 26 July 2018, https://www.statnews.com/2018/07/26/physicians-not-burning-out-they-are-suffering-moral-injury/
Yıldırım, Murat et al. “Coronavirus Stress and COVID-19 Burnout Among Healthcare Staffs: The Mediating Role of Optimism and Social Connectedness.” Current Psychology (New Brunswick, N.J.) vol. 40, no. 11, 2021, pp. 5763-5771. doi:10.1007/s12144-021-01781-w
Image source: ID 57135341 | Dreamstime.com
