An ethnography of neuropalliative care.

Presented by Marianne Sofronas, MA, RN, MSc(A), PhD

April 28th, 2023, 10am-12pm EST.

Come join us on April 28th where Dr. Sofronas will be sharing her doctoral work, an ethnographic study of neuropalliative care.

Background: The experience and management of neurologic disease presents unique challenges for patients, their family members, and clinicians involved in their care, particularly as patients approach end-of-life. The specialty of neuropalliative care has attempted to identify and meet these unique challenges. However, how neuropalliative care is experienced, provided and conceptualized are not well understood. For example, little is known about patient experiences, and disease-related changes to cognition and communication can make patient narratives difficult to understand. However, there is evidence that patients experience a life-limiting neurologic diagnosis as a deep threat to their personhood. In addition, conventional palliative care models and prognostication indicators do not apply to the end-of-life illness experiences of this population. These challenges carry important implications for patient care planning, provision and access. The goal of this study was to examine neuropalliative care as a complex clinical phenomenon. Results of this study could form a base upon which future research, guidelines for practice, institutional policies and ethical frameworks can be built.
Research Question: How is neuropalliative care experienced, provided, and conceptualized by people with end-stage neurologic disease, their families, neuroscience clinicians and researchers?
Methodology: A conceptual analysis of personhood developed as part of this project guided the project conceptually. The study took place in the acute care units and outpatient clinics of a university-affiliated tertiary care neurological hospital in Canada with a dedicated neuropalliative care consultation service. As an ethnographic study, the main data generation strategies were participant observation, semi-structured interviews and document review.
Results: The study highlighted complex experiences and challenges in neuropalliative care, from the patient, family, clinician and researcher perspectives. Ambiguities in defining the scope of neuropalliative care, recognizing the dying process, and navigating the tension between curative, chronic, and palliative care philosophies created ontological, epistemological, and axiological challenges that impacted patients, families, and clinicians in significant ways. Several aspects of personhood were observed, including the impact of complex losses from disease-related changes, care practices, and normative conceptions of personhood that relied on a healthy brain. Personhood was observed as fluid, relationally embedded, sustained by recognition, and limited by loss of autonomy, suffering and vulnerability.
Conclusion: This ethnographic study highlighted areas of ambiguity and tension in the experience, provision, and conceptualization of neuropalliative care. It also illustrated unique aspects of personhood, as it was experienced and negotiated at the end of life, particularly when cognition and communication were altered due to advancing neurologic disease. This study supports the use of ethnography as an inclusive, flexible research methodology for working with people who have experienced changes to their cognition and communication, or for whom verbal or written communication is not possible. Findings call on clinicians and researchers to consider how neuropalliative care can inform other palliative care approaches, and how clinicians and researchers can honour moral commitments to a population living with multiple vulnerabilities.