“More Areas of Grey”

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.

Authors

Publication Details

Journal
Journal of Hospice and Palliative Nursing
Published
2024-09-04
DOI
https://doi.org/10.1097/njh.0000000000001054
Citations
2
Primary Topic
Palliative Care and End-of-Life Issues
Type
article
Field-Weighted Citation Impact
1.09
Controls
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article

“More Areas of Grey”

Mary Ellen Macdonald, Vasiliki Bitzas, Marianne Sofronas, Franco A. Carnevale et al.
2 citations
Journal of Hospice and Palliative Nursing
Palliative Care and End-of-Life Issues
1.09
article

“More Areas of Grey”

Mary Ellen Macdonald, Vasiliki Bitzas, Marianne Sofronas, Franco A. Carnevale, David Wright
article en
2 citations

Abstract

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.

Journal of Hospice and Palliative NursingVol. 26(6)
No poverty
Openalex Percentile: Top 21%
Palliative Care and End-of-Life Issues
1.09
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