Should a Patient Always Be Patient?: Becky Richardson’s Advanced PWR course

Few things awaken such profound discomfort in the imagination as the thought of hearing Bad News from a doctor: “The test showed us that—”; “We’ll develop a treatment plan;” and so on. What might be even worse would be to hear such news being delivered to a loved one, knowing that all you can do is smile bravely and try to sound supportive. Such moments are unvarnished confrontations with one’s mortality—never a comfortable thought. And even when the medical challenge is not quite on the scale of life and death, it still occasions a sense of vast solitude. One finds oneself confronting not just the stark immediacy of life or death or wellness or pain, but (perhaps even more intimidatingly) one confronts the terrible edifice of Medicine that our society has suffered to be built.

To be a patient: strictly speaking, to be the one who is passive, the one who is acted upon; not, that is to say, the one who does things, who has agency.

How is one to stand one’s ground? On what ground is one to stand? Our colleague Becky Richardson explores this question in her new Advanced PWR course, Patient-Centered Stories, Research, and Advocacy. As she describes the intent that drives the course,

"It is especially important to center patients’ stories because they have not always been listened to–from patients who literally go unheard because they do not speak English, to Black patients who are more likely to have their pain go unbelieved and untreated, to women whose symptoms are more likely to be ascribed to hysteria (historically) or to anxiety (today). These gaps and silences are perpetuated by the U.S. healthcare system, which positions the patient as ignorant–or, even worse, guilty of “doing their own research” online–and in need of answers from an all-knowing doctor. But as patients and research have both attested to, giving patients a voice and listening to them holds transformative powers."

A concern with patient-centered counter-narrative animates this course, and propels Becky’s teaching. An earlier version of the course apparently tried to take on too much, assigning readings from Foucault and taking on questions relating to environmental justice and the use of literature in medical training. But as Becky explains, as she re-designed the course, “the core” was:

"the patient’s perspective–often overlooked given the usual cultural narratives and tropes around heroic doctors. It’s well earned, of course! But it’s a perspective we see over and over, and the basis of so many popular representations, from Grey’s Anatomy to, most recently, The Pitt. In designing this revised course, I wanted to focus specifically on the perspective of patients and on the lived experience of illness and disability."

We’re all familiar with “heroic doctor” stories, which have  recently been updated into “heroically-dysfunctional-but-still-devoted-to-their-patients” stories (the ongoing popularity of which fueled season after season of E.R. and Grey’s Anatomy) but still the focus has remained on doctors. Let us bear in mind: only a few of us will become doctors, but all of us will be patients. Are these stories not also worth telling? Especially when these stories can teach us about the shortcomings and blind spots of medical care itself? Few enterprises in our society have been lavished with such resources, and few have achieved such stunning results with those resources, but at the same time—for all its amazing progress and accomplishments—does not the great institution of Medicine also carry forward the same inequities and wilful ignorances (ignorance in the very literal sense of ignoring, of not listening) that we see in other institutions? Can we set aside for a moment our admiration for the marvels of medical science and technology (which, let’s be clear, are admirable: CT scans, mRNA vaccines, the list goes on and on), and step back to ask ourselves cui bono? Who has access to these marvels? And which patients benefit from the most precious and exacting diagnostic resource yet invented: the simple, respectful attention of a physician? How well is that resource allocated?

What brings us to the doctor? Usually it is when something hurts. Becky makes the difficulty of communicating pain a key touchstone for her pedagogy:

"One day that stands out for me was early on in the course, when we were discussing why – according to historians, philosophers, etc. – the experience of pain is particularly difficult to communicate. It was a day with some denser and at times more theoretical reading – including selections from Elaine Scarry’s The Body in Pain and Susan Sontag’s Illness as Metaphor – but the students never lost sight of how they would apply those ideas to real scenarios, including ones they’d encountered themselves or seen family or friends encounter. I was especially impressed by the way they applied their discussions that day to short “response/ engagement projects” – a favorite was a fantastic and thoughtful re-design of typical “pain scale” questionnaires that patients might encounter when their symptoms are being assessed, like the McGill Pain Questionnaire."

Pain is after all the immediate reality of seeking medical help. Given it is experienced subjectively, however, pain can be communicated only through narrative. We speak of our pain, we report it, we try to tell its story. What might be most challenging in this narrativizing is not to allow the pain to subsume one’s self—not to allow pain to become the whole of one’s sense of self. We have testimony of this difficulty from Ulysses S. Grant, who endured excruciating pain from throat cancer in his final days, as he struggled to finish writing the memoir whose sale was his family’s only chance of avoiding complete destitution:

“I think I am a verb instead of a personal pronoun.  A verb is anything that signifies to be, to do or to suffer.  I signify all three.”

Becky’s students respond with brief reflections to various texts, videos and images, before they settle on topics for the final project, which can take a variety of forms, genres or modes, from art to research to advocacy. A student may choose to expand on one of their earlier brief reflections. Students submit formal proposals of their projects, and once the proposal is accepted they set to work. As Becky comments on some of the projects in this course:

"a student responded to Georgia Lupia’s concept and practice of data humanism – particularly her project attempting to visualize the lived experience of Long Covid -- by designing his own data visualizations, applying this concept to the very important and timely theme of social connections during what’s been described by the last Surgeon General as an “Epidemic of Loneliness and Isolation.” Mapping out his own interactions with different friend groups and communities, in space and time, this student created wonderfully engaging as well as thought-provoking pieces."

This concept of “data humanism” already promises to restore a humane balance to the practice of medicine. We are more than our pain; how can we get a doctor to understand that?