Hinda and Arthur Marcus Institute for Aging Research, Hebrew SeniorLife, Boston, Massachusetts, USA.
Division of Gerontology, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts, USA.
J Am Geriatr Soc. 2023 Jun;71(6):1759-1772. doi: 10.1111/jgs.18303. Epub 2023 Mar 1.
Regional, facility, and racial variability in intensity of care provided to nursing home (NH) residents with advanced dementia is poorly understood.
Assessment of Disparities and Variation for Alzheimer's disease NH Care at End of life (ADVANCE) is a multisite qualitative study of 14 NHs from four hospital referral regions providing varied intensity of advanced dementia care based on tube-feeding and hospital transfer rates. This report explored the perceptions and experiences of Black and White proxies (N = 44) of residents with advanced dementia to elucidate factors driving these variations. Framework analyses revealed themes and subthemes within the following a priori domains: understanding of advanced dementia and care decisions, preferences related to end-of-life care, advance care planning, decision-making about managing feeding problems and acute illness, communication and trust in NH providers, support, and spirituality in decision-making. Matrix analyses explored similarities/differences by proxy race. Data were collected from June 1, 2018 to July 31, 2021.
Among 44 proxies interviewed, 19 (43.1%) were Black, 36 (81.8%) were female, and 26 (59.0%) were adult children of residents. In facilities with the lowest intensity of care, Black and White proxies consistently reported having had previous conversations with residents about wishes for end-of-life care and generally better communication with providers. Black proxies held numerous misconceptions about the clinical course of advanced dementia and effectiveness of treatment options, notably tube-feeding and cardiopulmonary resuscitation. Black and White proxies described mistrust of NH staff but did so towards different staffing roles. Religious and spiritual beliefs commonly thought to underlie preferences for more intense care among Black residents, were rarely, but equally mentioned by race.
This report refuted commonly held assumptions about religiosity and spirituality as drivers of racial variations in advanced dementia care and revealed several actionable facility-level factors, which may help reduce these variations.
在为患有晚期痴呆症的养老院（NH）居民提供护理的强度方面，存在区域、机构和种族差异，但这些差异的了解程度较差。
评估临终期阿尔茨海默病 NH 护理的差异和变异性（ADVANCE）是一项多站点定性研究，涉及来自四个医院转诊区域的 14 家 NH，这些 NH 根据管饲和医院转院率提供不同强度的晚期痴呆症护理。本报告探讨了黑人和白人（N=44）护理人员对患有晚期痴呆症的居民的看法和经历，以阐明推动这些差异的因素。框架分析揭示了以下预先确定的领域内的主题和子主题：对晚期痴呆症和护理决策的理解、与临终关怀相关的偏好、预先护理计划、管理喂养问题和急性疾病的决策、与 NH 提供者的沟通和信任、支持和决策中的灵性。矩阵分析探索了代理种族的相似/差异。数据收集于 2018 年 6 月 1 日至 2021 年 7 月 31 日。
在接受采访的 44 名代理中，19 名（43.1%）是黑人，36 名（81.8%）是女性，26 名（59.0%）是居民的成年子女。在护理强度最低的机构中，黑人和白人代理一致报告说，他们之前曾与居民就临终护理意愿进行过交谈，并且与提供者的沟通通常更好。黑人代理对晚期痴呆症的临床过程和治疗选择的有效性存在许多误解，特别是对管饲和心肺复苏。黑人和白人代理都描述了对 NH 工作人员的不信任，但对不同的工作人员角色却有不同的看法。宗教和精神信仰通常被认为是黑人居民更强烈的护理偏好的基础，但在种族之间很少提及，同样也很少提及。
本报告反驳了关于宗教和精神信仰是导致晚期痴呆症护理种族差异的驱动因素的普遍假设，并揭示了一些可采取的设施层面因素，这些因素可能有助于减少这些差异。
