Division of Geriatrics, University of California, San Francisco, San Francisco, California, USA.
Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, USA.
J Palliat Med. 2020 Aug;23(8):1013-1020. doi: 10.1089/jpm.2019.0565. Epub 2020 Mar 4.
In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families. To examine hospice stakeholders' perspectives on caring for PWD and their families. Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes. Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators. Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families. Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD. Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.
在美国，45%入住在临终关怀的人患有痴呆症。我们对临终关怀专业人员如何为痴呆症患者（PWD）及其家属提供偏好一致的临终关怀知之甚少。 旨在探讨临终关怀利益相关者对照顾 PWD 及其家属的看法。 采用半结构式访谈的多地点定性研究，访谈对象为跨学科临终关怀临床医生、领导和管理人员。跨学科团队使用恒定性比较方法来识别、编码和描述相关主题。 四个地理位置不同的美国非营利性临终关怀组织。51 名临终关怀员工：61%为临床工作人员，25%为执行领导，14%为管理人员。 访谈领域包括参与者在讨论临终关怀偏好方面与患者/家属的互动实践以及对随时间变化的专业意见。跨主题探针重点关注为 PWD 及其代理人/家属提供临终关怀。 关于在临终关怀中照顾 PWD 的四个主题。(1) 临终关怀中痴呆症的患病率正在增加，一些临终关怀机构正在制定计划以满足特定需求。(2) 环境影响偏好讨论和护理决策。(3) 在临终关怀中照顾 PWD 会带来独特的挑战，这是由于（i）痴呆症不是终末期的看法，（ii）在临终关怀入院前缺乏预先护理计划讨论，以及（iii）代理人决策者对其角色准备不足。(4) 临终关怀监管和政策变化对 PWD 的影响不成比例。 临终关怀专业人员认为，照顾 PWD 的需求不断增加，同时面临多层次的挑战。临床医生“在临终关怀之前”可以通过与患者和代理人讨论临终关怀偏好以及提供预期指导来帮助患者。
