As a palliative care clinician, I spend many moments throughout the week sitting in silence with patients, absorbing stories of discomfort and overwhelm, resisting platitudes, which I know can cause more harm than good. Remaining quiet requires training and discipline. “I always want to fill the space with words,” said a physician assistant student who shadowed me recently in the intensive care unit. That impulse is common–to crowd out the silence with mini lectures on physiology or pharmacology–anything to distract from the unfathomable. But she, too, stood firm in her discomfort, a silence that held the weight of a refinement in our patient’s neurologic diagnosis and much grimmer prognosis.
Through my palliative care lens, I’ve been thinking about how the inability to sit with discomfort and overwhelm might feed into the twisted rhetoric that structural determinants of health and the principles of diversity, equity, and inclusion can not or should not be taught in various spheres. In my experience, just about everything in medicine is taught–how to interpret labs, perform a skin biopsy, dose amoxicillin for a toddler with an ear infection. So it certainly makes sense to me–as well as organizations that are stakeholders in the education of health care professionals–that we are obligated to acknowledge, affirm, and attenuate the negative impact of structural harm. One place to start is with representation in medical textbooks. (See Kirk Johnson’s discussion in Synapsis: https://medicalhealthhumanities.com/2023/10/16/equitable-representation-in-medical-textbooks/.)
In addition to educational materials that lack diverse representation, we know that the pain of Black Americans is systematically undertreated (Meghani et al. 159); that White medical students and trainees have been found to harbor inaccurate views on biological differences between Blacks and Whites (Hoffman et al. 4299-4300); that hospital security is more often called on Black patients than Whites (Valtis et al. 32); that stigmatizing language in the electronic health record is associated with poor pain control in patients with a history of substance use disorder (Sedney et al. 558); and that the legacy of redlining has been linked to a preponderance of poor health outcomes, such as asthma, for Black and Indigenous persons (Martinez et al. 1116-1117).
So it should not surprise me as a White clinician that my biases–even as I try to pay attention to them–trail me home from work. On a recent Friday night my Dad and I had a movie night while my husband was out of state packing up some of my Dad’s belongings into a rental trailer. (My father unexpectedly traveled two states away to move in with us. Talk about discomfort and overwhelm–but that’s a story for another day!) My Dad gravitates toward historical and war themes. After a week of seeing seriously ill patients, I might choose a predictable romantic comedy. We settled on Hidden Figures (2016), the story of how the contributions of several Black women shaped the NASA space program in the early 1960s.
As the credits rolled by, my father mentioned that Kevin Costner is a great actor. I cringe when I share that I was thinking the same about Kirsten Dunst. And while these actors, I’m sure, turned in fine supporting performances, the central drama, the struggle through discomfort and overwhelm, rested nearly entirely in the skilled hands of actors Taraji P. Henson, Octavia Spencer, and Janelle Monáe, who portrayed the mathematical and engineering geniuses, Katherine Goble Johnson, Dorothy Vaughan, and Mary Jackson, respectively.
In the bubble of my living room, acknowledging my biases through the help of Hidden Figures, I was reminded why I gravitate toward the humanities and why I advocate for their infusion throughout health science curricula. In the relative compactness of a two-hour film, the stories of Goble Johnson, Vaughan, and Jackson were intertwined with the challenges of gender and racial dynamics in a backdrop of geopolitical stresses and debates about the “human computer” pitted against machines. Although I try to let go of the residue of the week as my weekend unfolds, the complexity of these intersections in Hidden Figures reminded me of the intricacies of “Total Pain,” one of the key guiding principles in providing comprehensive hospice and palliative care.
Cicely Saunders, the founder of the modern hospice movement in the UK, developed the concept of Total Pain at the same time that Goble Johnson, Vaughan, and Jackson faced a segregated NASA while simultaneously helping to launch U.S. astronauts into space (Brown). Saunders was a trailblazer in her own right. A nurse and social worker, Saunders later attended medical school. She devoted her career to taking care of the dying and realized that her patients experienced many forms of suffering: emotional, existential, social, and physical. As intuitive as it may be that suffering for seriously ill patients is likely multifactorial, this concept was revolutionary (Strang et al. 242).
More than sixty years have passed since Saunders first articulated the notion of Total Pain and the women depicted in Hidden Figures helped transform NASA’s space program. In recognition of their contribution, NASA headquarters updated its address to Hidden Figures Way (Waller). The overdue accolades are another reminder piled on to so many other examples that the legacy of segregation continues, especially when it comes to health care. Given the complexities of patient care and ongoing barriers to quality care, Total Pain is more relevant than ever, but it’s time for an update. The Total Pain model needs a fifth pillar–structural pain.
Acknowledgment of structural pain within hospice and palliative care reminds us of our responsibility to look deeply and meaningfully into the biases and barriers that impact the most vulnerable patients facing life-limiting or terminal conditions. Total Pain is too frequently hidden pain. The presence of structural pain calls upon health care workers to sit with the discomfort and overwhelm in ourselves, knowing that we may contribute to the persistence of processes and barriers that inflict suffering on patients. And when well-curated, the humanities–through films such as Hidden Figures–can help us better understand Total Pain and contribute to our personal and professional growth and development—if we are receptive. Ultimately, Dr. Saunders laid the foundation for comprehensive and nuanced care for seriously ill patients. Adding structural pain to Total Pain is a much-needed refinement. With structural pain at the forefront of palliative care, we might have a better prognosis as caregiver clinicians and pay even closer attention to the total suffering of our patients.
Works Cited
Brown, Elisha. “NASA Renames Facility After Katherine Johnson of ‘Hidden Figures’ Fame.” The New York Times, 23 Feb. 2019, https://www.nytimes.com/2019/02/23/science/nasa-hidden-figures-katherine-johnson.html?searchResultPosition=3
Hoffman, Kelly M. et al. “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs About Biological Differences Between Blacks and Whites.” Proceedings of the National Academy of Sciences of the United States of America, vol. 113, no. 16, 2016 pp. 4296-301. doi:10.1073/pnas.1516047113
Martinez, Adali et al. “Structural Racism and Its Pathways to Asthma and Atopic Dermatitis.” The Journal of Allergy and Clinical Immunology, vol. 148, no. 5, 2021, pp. 1112-1120. doi:10.1016/j.jaci.2021.09.020
Meghani, Salimah H. et al. “Time to Take Stock: A Meta-analysis and Systematic Review of Analgesic Treatment Disparities for Pain in the United States.” Pain Medicine (Malden, Mass.), vol. 13, no. 2, 2012, pp. 150-74. doi:10.1111/j.1526-4637.2011.01310.x
Sedney, Cara L. et al. “Stigmatizing Language Expressed Towards Individuals With Current or Previous OUD Who Have Pain and Cancer: A Qualitative Study.”Journal of Pain and Symptom Management, vol. 65, no. 6, 2023, pp. 553-561. doi:10.1016/j.jpainsymman.2023.02.007
Strang, Peter et al. “Existential Pain–an Entity, a Provocation, or a Challenge?” Journal of Pain and Symptom Management, vol. 27, no. 3, 2004, pp. 241-50. doi:10.1016/j.jpainsymman.2003.07.003
Valtis, Yannis K. et al. “Race and Ethnicity and the Utilization of Security Responses in a Hospital Setting.” Journal of General Internal Medicine, vol. 38, no. 1, 2023, pp. 30-35. doi:10.1007/s11606-022-07525-1
Waller, Allyson. “NASA Names Headquarters After Its First Black Female Engineer, Mary Jackson.” The New York Times, 24 June 2020, https://www.nytimes.com/2020/06/24/science/nasa-mary-jackson-hidden-figures.html
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