“The patient.” I hate that term. I hate to write about “the patient,” I hate to talk about “the patient.” But before I proceed, let me take a moment to locate myself: I am a medical social worker, a therapist, and a chronic illness patient with SLE (lupus). A significant part of my job is helping people navigate the healthcare system and find their voices to advocate for themselves. Developing these skills has certainly come in useful in my personal life as well. No doubt because of the convergence of these different selves, I spend a lot of time thinking about the system and what patients need. That led me to explore the idea of being a patient, what the word means, and how it might inform the way we interact with our own healthcare systems.
Most of us have heard the phrase, “words have power,” which is part of why the word patient bothers me so much. I know the history of the term “patient.” I understand the origin of the word comes from the Greek and denotes suffering. I also know that it’s often conflated with its homophone “patience.” We have abundant Victorian era examples of the importance of patients, especially women, being required to be patient, passive, and compliant lest they were seen as hysterical and, as a result of that perceived hysteria, institutionalized. While the practice of medicine has largely evolved away from the earlier roles of all-knowing physician and silent patient, overtones of that dynamic persist.
My experience suggests this has some roots in medical training but equally so, there are roots in the time constraints and pressures that healthcare workers face. But beyond that, I also think there’s something about how patients embody the idea of “patienthood,” and I wonder if that comes from the history of the word. When I approach my concern about using the term patient with other healthcare workers or with academics studying health care, and even with patients, there are two questions I almost always get. The first is: why? And the second is: what else would we use?
When I consider it from my dual roles, addressing the “why” feels obvious to me; the idea of the patient as a passive sufferer feels like a mismatch with tenets of modern healthcare. When we break it down we see that the term patient is defined as, “one who suffers.” That’s accurate—having a chronic illness means you are suffering, right? The truth is that my experience is more complicated than that.
As I write this, I am tired —not I-want-to-crawl-in-a-hole-and-never-come-out, peak lupus tired but more tired than I would have been at this time of day before lupus. I have a headache that a normal amount of ibuprofen will relieve. My joints are done with their morning problems and feel pretty normal. Overall, I feel like a person who maybe has a touch of a cold but not a potentially life-threatening or limiting chronic illness. Right now I do not suffer. That was not the case a couple of days ago, when I could hardly keep myself awake, even after nine hours of solid sleep. I spent the day with a headache that just wouldn’t quit and a foggy brain to go with it. But right now I feel normal, average, just a regular person with a touch of . . . something.
Why is this relevant? Because I also just got off the phone with my rheumatologist for one of my regular appointments. We talked about increasing my weekly methotrexate dose because of my persistent symptoms, even though I felt OK during the appointment. Appointments like that feel like cognitive dissonance for me. I feel more like a social worker talking about someone else rather than being the actual patient because I just don’t feel like a patient.
Being a patient seems associated with passivity. I have worked with patients who do not volunteer information or even ask clarifying questions when their doctor has shared something they don’t understand. When I’m at the bedside for these appointments, I work to ask the questions I think might be relevant to them, but I can only ask what comes to mind for me. Even when I prepare people and tell them their doctor would welcome their engagement, there is something about the way the system is set up that contributes to a sense of learned helplessness.
I can’t help but wonder at the different factors that might contribute to that helplessness. I suspect that the jargon that comes with healthcare is part of it. We are so used to acronyms and linguistic shortcuts that even with the best of intentions, bedside conversations can accidentally exclude patients and their support people. Many people tell me they feel like once they enter a big system, like a hospital, they feel as though they have stepped onto a conveyor belt that will whisk them along, and that they have no control over it. Even with efforts to reduce the hierarchical and institutional structure, such as better signage so people don’t feel lost or doctors inviting the use of first names, that feeling remains for many. And if you are admitted to a hospital, then there is the added issue of being the patient in bed, in a gown (which also contributes to a sense of disempowerment), often sharing a room and talking about very private mattes. It’s enough to make a person just shut down. Even in office-based appointments, I observe people not asking for clarification, apologizing for taking up the doctor’s time (even during a scheduled appointment), and generally reluctant to take up any space.
Despite my professional experience, I notice myself doing those things too. It happens even when I’m in an office or phone-based appointment, with my clothes on and a list of topics to discuss in hand. This is a dynamic I’ve internalized. Both of my primary doctors have invited the use of first names, have taken lots of time with me, ask my opinion on my health, and encourage my questions. And this is not the result of my dual roles with these two doctors. Professionally, I have seen this kind of engagement more and more. While there are some doctors who would, no doubt, prefer the old model of the silent patient and pontificating doctor, many recognize how much more information they glean when the patient brings their concerns forward, asks questions, and is engaged. I don’t know too many doctors who see questions as a challenge to physician authority or would otherwise be offended these days.
I do think, as I’ve outlined, there are myriad factors that contribute to a sense of passivity, but I keep going back to the word “patient” and the potential influence it has. I am not the first to highlight the compliance associated with the word nor the first to wonder if we need to change it. But I wonder if it’s time to revive this conversation. Can we expect a change when we still have incredibly dehumanizing aspects of patienthood, such as hospital gowns, every time we need to do something even slightly medical? I mean, if wearing one of those doesn’t engender a sense of dependency, regardless of what term is used for patients, I don’t know what else would. As the linked article outlines, there are some very good reasons to use hospital gowns in certain cases, but not in all or even most. Perhaps part of the reluctance to move away from globally dehumanizing aspects of healthcare, such as gowns, comes from the passivity that is part of patienthood? Perhaps if patients felt received by the system differently, the system would likewise treat them differently?
So I guess that’s where I would leave it. Rather than offering a solution, I want to end with a call to action. What conjures for you the idea of two (or more) people coming together with their expertise in service to your health? How do you describe your role in that dynamic? How would you like to? Maybe “patient” works just fine for you or maybe there’s something else you’ve been thinking about that might work better. But either way, I would love to know what you think, and I doubt I’m the only one.