It is widely assumed that the use of medical care will lead to improvements in health, yet questions remain about the medical system's contributions to health disparities. In this review, we examine these issues with a specific focus on how health care systems may actually generate or exacerbate health disparities. We review current knowledge about inequality and bias in the health care system, including the epidemiology of such patterns and their underlying mechanisms. Over the past three decades, we observe growth in our knowledge about provider cognitive and psychological processing, including the development of precision measuring tools to analyze provider bias, racial and otherwise. In the same timeframe we observe decreased emphasis on social, interactional, organizational, and structural factors that shape variation in medical treatment. We frame our discussion within a modified social ecological model and discuss tools for moving forward and reinvigorating sociological presence in this important research area.
Background: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes. Objective: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice. Design: Qualitative case study, using in-depth interviews and constant comparative method. Setting/Patients: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background. Measurements: Themes identified in qualitative in-depth interviews. Results: Patients rarely refused hospice outright but more often postponed using a “soft no,” in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care. Conclusions: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.
The term patient noncompliance emerged in the 1970s as a tool for analyzing why people do not follow medical directives. Despite its early popularity, the term has languished in sociology while flourishing in biomedical arenas. It seems flaccid in a contemporary healthcare context as it overestimates physician authority and is tone-deaf to biomedicalization. I draw from sociological and anthropological traditions, as well as qualitative interviews with terminally ill patients ( N = 26) and their caregivers ( N = 16), to consider facets of a biomedicalized health experience and implications for an updated vision of compliance. First, pathways to care have proliferated under biomedicalization. With increased pathways comes increased need for understanding how treatment plans are socially constituted and assessed. Finally, increased complexity demands a more diverse vocabulary for understanding health related decisions. This paper is a call to sociologists to take the lead in transforming and updating this consequential concept.
Hospice utilization has the potential to improve quality of life for patients while also decreasing healthcare costs at end of life. Barriers to hospice utilization have been identified, but less is known about how patient, provider, and system domains influence one another. We use in-depth interviews with physicians to examine the social, cultural, and economic contexts of decision making and how physician and organizational domains influence patient decision making around hospice. We identify sources of delay in physicians advocating for hospice referrals for their late-life patients that show how patient, physician, and system factors interact. Our results reveal incentives to postpone discussion of hospice that are not fully captured in policy perspectives, clinical guidelines, or current research paradigms focused on individual domains of influence. Opportunities to address previously identified barriers to hospice will benefit from consideration of how seemingly separate domains function in an integrated social context.
How can research on patient compliance be updated to reflect the realities of today's health and medical landscapes? The idea of patient compliance first proliferated in the 1970s, an era when physicians had a great deal of authority, healthcare was less corporate, pharmaceutical options were simpler, and the Internet was nonexistent. Saying a patient was "noncompliant" was a way of pointing to deviant behavior that was not aligned with medical demands (and therefore, presumably, patients' own interests). Fifty years later, today's medical landscape is very different in ways that limit the usefulness of the original concept. The social sciences have a range of tools that can (and should) be applied to update this concept, which is critical for understanding where medicine is successful, where it fails, and how people manage their health. This article uses qualitative interviews with terminally ill patients (n = 26) and their caregivers (n = 16) to examine how end-of-life decision making reveals much about the current health landscape and what it means to follow (or not) medical advice. The case of end-of-life decision making is informative precisely because it falls at an intersection of many changes that have occurred in recent decades: there are more options for treating serious illnesses than ever before but also more options for palliative care, hospice, and assisted death. Information is also more accessible than ever before. Qualitative thematic analysis facilitated the identification of patterns and key junctures in decision-making processes.
We use end-of-life decision making as a case for examining processes of gatekeeping in medical settings. End-of-life is an exemplar in a broader context of research in professionalized and institutionalized medical settings. Influences of biomedicalization, increases in consumer (patient) options, decreases in physician authority, and a proliferation of treatment options all contribute to a context in which ethnographic study of medical settings is more complex, more urgently needed, and potentially more difficult at the same time. Building on existing literature, we suggest that gaining access to a research site is less a matter of entrée through a gate and more a long-term navigation of a dynamic social web of actors, relationships, and organizations. Further, we borrow from Nader’s (1974) concept of ‘studying up’ to examine how elite power processes may be reflected in gatekeeping. Our discussion of lessons learned considers methodological and conceptual implications with broad relevance for qualitative researchers.
Despite changes in specific features of the US health‐care system and policy environment in the past 50 years, professional dominance of medicine remains consistent. Extant social science research has considered how the cultural authority of medicine manifests and persists, sometimes emphasizing institutional structural influences and other times focusing on how individuals’ agentic behaviour shapes their decisions and strategies regarding the consumption of health‐care. We build on and extend these literatures using qualitative in‐depth interview data to explore a typology of ways palliative care patients and their caregivers experience medical treatment imperatives across a range of social contexts. Rather than viewing or validating these lived experiences through a medical lens, we foreground the accounts of patients and caregivers as they describe their experiences of where, when, and how they perceive pressure to engage in medical treatment in late life. We adopt a Foucauldian lens to examine how this biopower is both an internal and external experience in our modern biomedicalized society. Our work reveals how treatment imperatives are generated within clinical medical encounters, but also coproduced through multiple and overlapping forces that compel individuals to pursue medical solutions to bodily problems.
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