Thinking critically about the role of complaint in patient care, Jelmer Brüggemann, Lisa Guntram and Ann-Charlotte Nedlund explore the ’difficult patient’ as a medical humanities concept.
Possibility comes from intimacy with what has thickened over time. You might be chipping away at the old block, those structures, that wall, that barrier, and all you seem to have done is scratched the surface. That scratching is learning. –Sara Ahmed in Complaint! (2021, pp. 309-310)
Many care professionals share the experience of encountering patients they might label as “difficult”. Likewise, it seems common for patients to fear being seen as a “difficult” patient. Central concerns within existing medical literature about the difficult patient include whether there are specific patient characteristics that could identify the difficult patient; how care professionals experience encounters with the difficult patient; and how care professionals can deal with the difficult patient in constructive ways. But the difficult patient is not only a psychological or relational problem. In a chapter in the recently published Handbook of Social Sciences and Global Public Health (Brüggemann et al. 2023), we highlight how the difficult patient is constructed by different logics in medical policy and practice.
We argue, as one example, that difficulties arise in relation to how active patients are expected to be, in the clinic or as part of their own care trajectories. Figuring out what “active” means in a specific care context is not an easy task for patients. Neoliberal discourses around active and involved patients intersect with local expectations, specific sociomaterial conditions and, oftentimes, illness. This all gets compressed in a very specific understanding of how and when patients are supposed to be active, in that exact time and space: when to be verbal or not, when to be tolerating or not, when to show in-depth knowledge of the body, or rather the opposite. In confined “active spaces,” then, it can be extremely challenging for patients not to become difficult patients. This is similar for patients whose symptoms do not match diagnostic criteria and patients who choose to not continue surgical treatment aimed at making their bodies fit social norms.
If ideas and logics that govern care create specific difficult patients, we also suggest that we can turn this argument around. Using Ericka Johnson’s language, we argue that the difficult patient can function as a “prism” that can refract discursive elements “into a colourful spectrum of laws, governance practices, concerns, ideologies, assumptions, presumptions, embodied values and norms” (2020: 11). The difficult patient can thus function not only as an entry point for empirical observation or professional reflection but also as an analytical concept in medical humanities research.
These ideas are theoretical reflections in our project “What are you complaining about?”. Confirmation of project funding from the Swedish Research Council arrived in November 2020, but amidst a heavy COVID-19 winter surge, we decided to develop our theoretical framework while awaiting opportunities to collect empirical material. Now, as of January 2023, we are (finally!) doing patient interviews and have started to organize focus groups at a hospital clinic. The project focuses on patient critique in care encounters or instances where patients verbally express grievances directly to care professionals, sometimes called “informal complaints” (Gal and Doron, 2007). As hinted by the ambiguity in its title, this project starts from tensions that underly the increased importance of patient feedback in many Western health care systems. “Complaining” or “raising concerns” are, on the policy level, presented as part of the good and active patient who is expected to take responsibility for the improvement of not only their own care, but also for systematic care improvements. Yet, complaining and raising concerns are also common characteristics in studies that have described “archetypical” difficult patients. In our project we plan on studying this tension in Swedish health care through patients’ and care professionals’ stories. We are keen on analysing specific norms and values around “informal complaining”: who can informally complain in successful ways? How is this done, when, and to whom? How are care professionals expected to deal with such informal complaints, and how are these expectations guided by ideas of professional learning and the improvement of care? Besides its potential clinical value, we hope answering these questions will help us to further explore the analytical value of the “difficult patient”.
Zooming out, we are intrigued to see how the difficult patient as a concept could enrich and be enriched by other themes in the medical humanities. We can think of the difficult patient in relation to medical humanities’ interest in medical knowledge practices (e.g., work on epistemic authority, epistemic injustice, and othering), bodies and lived experience (e.g., work on disability and lived bodily experiences of patienthood), or technology and medicine (e.g., work on biomedical innovation, digitalization, and changing materialities of care). We are keen to see the ‘difficult patient’ at work in the medical humanities, as a wrinkle, a disruption, a reminder, as “scratching the surface”.
About the Team
Jelmer Brüggemann is associate professor and Head of Division at the Department of Thematic Studies – Technology and social change, and affiliated to the Centre for Medical Humanities and Bioethics, both at Linköping University, Sweden. His research lies mainly within the area of medical sociology with a current focus on how ideas of the active patient and patient involvement are understood and made sense of in care practices. He tweets at @j_bruggemann.
Lisa Guntram is associate professor at the Department of Thematic Studies – Technology and Social Change and coordinator of the Centre for Medical Humanities and Bioethics, both at Linköping University, Sweden. With a specific interest in embodiment and gender, her research often examines how different actors make sense of embodiment and norms in medical encounters. She tweets at @LisaGuntram
Ann-Charlotte Nedlund is associate professor in political science at the Department of Health, Medicine and Caring Sciences, and affiliated to the Centre for Medical Humanities and Bioethics, at Linköping University. Her research examines health and social policy issues related to the organizing of the welfare system, governance, citizenship, democracy, legitimacy, often from a critical and interpretive policy perspective disentangling how ideas, norms, values, and power are handled in practice in terms of interactions and sense-making processes. She has initiated and is the coordinator of the ‘Citizenship and Dementia: International Research Network’.
The project “What are you complaining about” is funded by the Swedish Research Council (no. 2020-01594)
Ahmed, S. (2021). Complaint! London: Duke University Press.
Brüggemann, J., Guntram, L., Nedlund, A-C. (2023). The “difficult patient” – Dominant logics and misfits in medicine. In: Handbook of Social Sciences and Global Public Health. Liamputtong, P. (Ed.), Cham: Springer. https://doi.org/10.1007/978-3-030-96778-9_138-1
Gal, I., & Doron, I. (2007). Informal complaints on health services: hidden patterns, hidden potentials. International Journal for Quality in Health Care, 19(3), 158-163.
Johnson, E. (2020). Refracting through technologies: Bodies, medical technologies and norms. London: Routledge