School of Nursing, Oregon Health & Science University, Portland, Oregon, United States of America.
Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland, United States of America.
PLoS One. 2024 Apr 1;19(4):e0301426. doi: 10.1371/journal.pone.0301426. eCollection 2024.
Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations.
To describe how patients from marginalized populations experience and perceive ACP.
We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews.
The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians' biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP.
Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations.
在临终关怀（EOL）中存在健康差距。由于种族、民族、收入、地理位置、语言或文化背景等原因而处于边缘地位的个人和社区，在获得和接受高质量 EOL 护理方面面临着系统性障碍。预先医疗指示（ACP）为患者及其护理人员制定 EOL 决策，目的是促进高质量的 EOL 护理。边缘化人群中低参与 ACP 被认为是 EOL 护理差异的原因之一。为了促进健康公平并提供符合每个个体目标和价值观的护理，需要改善边缘化人群的 ACP。
描述边缘化人群的患者如何体验和感知 ACP。
我们使用解释性现象学方法进行半结构化定性访谈。参与者是从美国太平洋西北地区一个城市的四家初级保健诊所和一家疗养院招募的。2021 年 1 月至 12 月期间，30 名患有严重疾病的边缘化人群患者参加了个人访谈。在访谈中，参与者被要求描述他们对 ACP 的经验和看法。
30 名参与者的平均年龄为 69.5 岁；19 名（63%）为女性；12 名（40%）为亚裔/太平洋岛民，10 名（33%）为黑人；9 名（30%）为非英语母语者。我们的三个主要发现是：1）边缘化人群的患者愿意参与 ACP；2）参与 ACP 存在多种障碍；3）当临床医生倾听时，有意义的 ACP 对话是可以进行的。尽管边缘化人群的患者愿意参与 ACP，但零碎和限制的医疗保健系统以及临床医生的偏见行为或缺乏了解患者的兴趣，都是障碍。那些觉得他们的临床医生花时间倾听的患者，会受到鼓励去参与 ACP。
尽管普遍认为边缘化人群的患者不愿意参与 ACP 对话，但他们愿意参与 ACP 对话。然而，与医疗保健提供者进行有意义的 ACP 对话存在障碍。临床医生需要意识到这些障碍，并倾听，以建立信任并使边缘化患者参与到有共同意义的 ACP 对话中。
