Bandini Julia I, Schulson Lucy B, Messan Setodji Claude, Williams Jhacova, Ast Katherine, Ahluwalia Sangeeta C
RAND Corporation, Boston, Massachusetts, USA.
Department of Medicine, Boston University School of Medicine, Boston, Massachusetts, USA.
J Palliat Med. 2023 Feb;26(2):220-227. doi: 10.1089/jpm.2022.0237. Epub 2022 Aug 16.
Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. Patients receiving outpatient palliative care ( = 153 Black patients and 2215 White patients) from 44 palliative care programs across the United States completed the survey; 14 patients and family caregivers who identified as racial/ethnic minorities participated in an in-depth qualitative interview. We measured patients' experiences of (1) feeling heard and understood by their palliative care provider and team and (2) receiving desired help for pain using items developed from the larger quality measures project. We also conducted in-depth interviews with 14 patients and family caregivers to understand their experiences of palliative or hospice care to provide additional insight and understand nuances around minoritized patient experiences with palliative care. Survey responses demonstrated that a similar proportion of Black patients and White patients (62.9% vs. 69.3%, = 0.104) responded "completely true" to feeling heard and understood by their provider and team. Fewer Black patients than White patients felt that their provider understood what was important to them (53.3% vs. 63.9%, = 0.009). The majority of Black patients and White patients (78.7% vs. 79.1%, = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.
种族和族裔差异在医疗保健领域有充分记录，但在姑息治疗中普遍研究不足。这项混合方法研究的目的是调查姑息治疗中患者体验在种族/族裔方面的差异，并定性探索少数族裔患者对重病护理的体验。本研究的数据是作为一项更大规模的全国性努力的一部分收集的，该努力旨在制定门诊姑息治疗的质量指标。来自美国44个姑息治疗项目的接受门诊姑息治疗的患者（153名黑人患者和2215名白人患者）完成了调查；14名被认定为种族/族裔少数群体的患者和家庭护理人员参与了深入的定性访谈。我们使用从更大规模的质量指标项目中开发的项目，测量了患者在以下两方面的体验：（1）感到被姑息治疗提供者和团队倾听和理解；（2）获得所需的疼痛帮助。我们还对14名患者和家庭护理人员进行了深入访谈，以了解他们的姑息或临终关怀体验，从而提供更多见解，并了解少数族裔患者姑息治疗体验的细微差别。调查结果显示，黑人患者和白人患者中对被提供者和团队倾听和理解回答“完全正确”的比例相似（62.9%对69.3%，P = 0.104）。认为提供者理解对自己重要之事的黑人患者比白人患者更少（53.3%对63.9%，P = 0.009）。大多数黑人患者和白人患者（78.7%对79.1%，P = 0.33）觉得他们在疼痛方面得到了想要的帮助。对患者和家庭护理人员的访谈揭示了姑息治疗的积极体验，但也展示了在转诊至姑息治疗之前在医疗保健中遭受歧视的经历。未来需要开展工作，以了解少数族裔患者姑息治疗体验以及接受疼痛和症状管理方面的细微差别。
