Marianne Sofronas, David Kenneth Wright, Mary Ellen Macdonald, Vasiliki Bitzas, Franco A Carnevale
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"More Areas of Grey": Ambiguities in Neuropalliative Care.
Neuropalliative care as a clinical speciality aims to address the unique end-of-life needs and concerns of patients with neurologic disease. Although literature has outlined clinical hurdles, a more nuanced understanding of how neuropalliative care was experienced, conceptualized, and enacted could provide context and depth to better outline practice and research priorities. This article presents findings from an ethnographic study of neuropalliative care conducted in a university-affiliated, tertiary care neurological hospital in Canada with a dedicated neuropalliative consultation service. Specifically, this article examines how clinical hurdles outlined in the neuropalliative literature were experienced and addressed by multiple stakeholders, including patients, families, and clinicians. These clinical hurdles include locating the scope of neuropalliative care, ascertaining the impact of prognostic uncertainty and poor recognition of the dying patient, and navigating the tensions between curative and palliative philosophies. In the discussion, the implications of these clinical hurdles are addressed, concluding with reflections on the role of ethnography, palliative care in the context of functional changes, and broadening approaches to uncertainty.
期刊介绍:
Journal of Hospice & Palliative Nursing (JHPN) is the official journal of the Hospice & Palliative Nurses Association and is the professional, peer-reviewed journal for nurses in hospice and palliative care settings. Focusing on the clinical, educational and research aspects of care, JHPN offers current and reliable information on end of life nursing.
Feature articles in areas such as symptom management, ethics, and futility of care address holistic care across the continuum. Book and article reviews, clinical updates and case studies create a journal that meets the didactic and practical needs of the nurse caring for patients with serious illnesses in advanced stages.