Central Coast Research Institute (CCRI) for Integrated Care, Gosford, NSW, Australia.
The University of Newcastle, Gosford, NSW, Australia.
BMC Geriatr. 2024 Jan 9;24(1):40. doi: 10.1186/s12877-023-04449-1.
The need for better end-of-life care for people with dementia has been acknowledged. Existing literature suggests that people dying with dementia have less access to palliative care, yet little is known about the care provided to people with dementia at the end of life. This study aimed to establish evidence related to end-of-life care for people dying with dementia in hospital compared to other settings.
A retrospective clinical audit of people who had a diagnosis of dementia and had accessed services within a local health district, who died between 2015 and 2019, was conducted. A total of 705 people were identified, and a subset of 299 people randomly selected for manual audit. Chi-square p-values were used to compare the place of death, and a t-test or non-parametric test was used to assess the significance of the difference, as appropriate. Measures of functional decline within one month of death were assessed using mixed effects logistic regression models.
The characteristics of people differed by place of death, with people who died in hospital more likely to be living at home and to not have a spouse. Less than 1 in 5 people had advance care directives or plans. Many were still being actively treated at the time of death: almost half of people who died in hospital had an investigation in their final 72 hours, less than half of people were coded as receiving palliative care at death, and more than 2 in 3 people did not get access to specialist palliative care. Declining function was associated with the terminal phase.
This study provides novel insights for those providing end-of-life care for people with dementia. Healthcare professionals and policy makers should consider how demographic characteristics relate to the places people with dementia receive end-of-life care. The care provided to people with dementia in the last year of their life highlights the need for more support to prepare advance care documentation and timely consideration for palliative care. Changes in markers of nutritional status and function in people with advanced dementia may help with identification of terminal phases.
人们已经认识到需要为痴呆症患者提供更好的临终关怀。现有文献表明，患有痴呆症的人接受姑息治疗的机会较少，但对于临终时痴呆症患者的护理知之甚少。本研究旨在确定与在医院中临终的痴呆症患者相关的临终关怀证据，与其他环境进行比较。
对在当地卫生区接受过服务并在 2015 年至 2019 年间死亡的被诊断为痴呆症的人进行了回顾性临床审计。共确定了 705 人，并随机选择了 299 人进行手动审核。使用卡方 p 值比较死亡地点，并根据需要使用 t 检验或非参数检验评估差异的显著性。使用混合效应逻辑回归模型评估死亡前一个月内功能下降的情况。
死亡地点的人群特征不同，在医院死亡的人更有可能住在家里，没有配偶。不到 1/5 的人有预先护理指示或计划。在死亡时，许多人仍在接受积极治疗：近一半在医院死亡的人在最后 72 小时内进行了调查，不到一半的人在死亡时被编码为接受姑息治疗，超过 2/3 的人无法获得专科姑息治疗。功能下降与终末期有关。
本研究为为痴呆症患者提供临终关怀的人提供了新的见解。医疗保健专业人员和政策制定者应考虑人口特征与痴呆症患者接受临终关怀的地点之间的关系。在生命的最后一年为痴呆症患者提供的护理突出表明，需要更多的支持来准备预先护理文件，并及时考虑姑息治疗。在晚期痴呆症患者的营养状况和功能指标发生变化时，可能有助于识别终末期。
