Personhood, prognostication, and recognition: lessons learned from an ethnography of neuropalliative care

The objectives of this presentation are to:

· Highlight some challenges in integrating palliative care models with patients with end-stage neurologic disease, neurocognitive disorders, functional changes, and disability.

· Understand the impact of these challenges on patients and families, as well as on clinicians and researchers.

Review strategies for support and advocacy

Marianne Sofronas, RN, PhD

Postdoctoral Fellow, Palliative Care and Nursing Ethics Hub

https://palliativenursingresearch.com/

School of Nursing, University of Ottawa

Faculty Lecturer, Ingram School of Nursing, McGill University

Marianne is a nurse, ethicist, and anthropologist. She completed an MA in Anthropology at the New School for Social Research in New York City, an MSc and PhD in nursing at McGill. Marianne is currently a post-doctoral fellow at the University of Ottawa with the Palliative Care and Nursing Ethics Hub, and a faculty lecturer at the Ingram School of Nursing, at McGill. Marianne’s research is in neuropalliative care, clinical ethics, personhood in illness, clinical and organizational applications of compassionate frameworks, and ethnography with vulnerable populations. Marianne worked clinically for over a decade; as a nurse clinician in neuro-critical care and as a clinical ethicist at the MUHC.