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.
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.
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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