Sofronas Marianne, Wright David Kenneth, Macdonald Mary Ellen, Bitzas Vasiliki, Carnevale Franco A
J Hosp Palliat Nurs. 2024 Dec 1;26(6):308-316. doi: 10.1097/NJH.0000000000001054. Epub 2024 Sep 4.
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.
神经姑息治疗作为一门临床专业，旨在满足神经系统疾病患者独特的临终需求和关切。尽管文献已经概述了临床障碍，但对神经姑息治疗的体验、概念化和实施方式进行更细致入微的理解，可以为更好地勾勒实践和研究重点提供背景和深度。本文介绍了在加拿大一家大学附属的三级护理神经医院进行的一项关于神经姑息治疗的人种志研究结果，该医院设有专门的神经姑息咨询服务。具体而言，本文探讨了神经姑息治疗文献中概述的临床障碍是如何被包括患者、家属和临床医生在内的多个利益相关者所体验和应对的。这些临床障碍包括确定神经姑息治疗的范围、确定预后不确定性的影响以及对临终患者认识不足，以及在治愈性和姑息性理念之间进行权衡。在讨论中，阐述了这些临床障碍的影响，最后反思了人种志的作用、功能变化背景下的姑息治疗以及应对不确定性的拓展方法。
