"More Areas of Grey": Ambiguities in Neuropalliative Care.
| Autor: | Sofronas, Marianne, Wright, David Kenneth, Macdonald, Mary Ellen, Bitzas, Vasiliki, Carnevale, Franco A. |
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| Předmět: |
PSYCHOLOGY of the terminally ill
PALLIATIVE treatment MEDICAL care ETHNOLOGY research INTERVIEWING STATISTICAL sampling SCIENTIFIC observation PARTICIPANT observation PATIENT care PHYSICIANS' attitudes UNCERTAINTY DECISION making in clinical medicine JUDGMENT sampling REFLECTION (Philosophy) NEUROLOGICAL disorders FAMILY attitudes THEMATIC analysis RESEARCH methodology CONCEPTUAL structures TERMINAL care MEDICAL needs assessment NEEDS assessment PROGNOSIS PATIENTS' attitudes MEDICAL practice |
| Zdroj: | Journal of Hospice & Palliative Nursing; Dec2024, Vol. 26 Issue 6, p308-316, 9p |
| Abstrakt: | 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. [ABSTRACT FROM AUTHOR] |
| Databáze: | Supplemental Index |
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