Become an AAHPM Member to view PC-FACS
Design and Participants: This study, using an interpretive phenomenological approach with semi-structured qualitative individual interviews, described how patients from marginalized populations experience and perceive ACP. Patients from marginalized populations with serious illness were recruited (purposive sampling) from four primary care clinics and one nursing home in a US Pacific Northwest city. Patients were asked to describe their experiences and perceptions about ACP. Three researchers read the transcripts; inductively coded exemplary perspectives and experiences; compared codes and quotations, looking for commonalities, differences, and patterns; and discussed until achieving shared understanding about participants’ experiences and perceptions. Data were interpreted through the lenses constructed by each researcher’s lived experiences. Before and throughout analysis, researchers from different cultural backgrounds and positions reflected on how their own experiences informed or potentially biased their interpretations. External researchers with ACP expertise among diverse patient populations reviewed preliminary findings.
Results: Patients (N=30) were aged mean 70 years; 63% women; 40% Asian/Pacific Islander and 33% Black; and 30% non-native English speakers. The findings were: 1) patients 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 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.
Commentary: This study not only identified barriers to ACP that are common to adults from marginalized communities with serious illness but also practical steps to facilitate ACP, namely identifying past EOL experiences and active listening by a clinician familiar to the patient to minimize the effects of bias and stereotyping. The inclusion of Asian/Pacific Islanders is important given the community’s rapid growth over the last two decades. As this group encompasses individuals from over 20 countries, tailored models for ACP are urgently needed. The authors suggested initiating ACP outside the healthcare setting, and future work could incorporate leveraging peers with prior EOL experiences.
Bottom Line: Advance care planning with individuals from marginalized communities afflicted by serious illness requires longitudinal relationships and peer support.
Reviewer: Rushil V. Patel, MD, The University of Alabama at Birmingham, Birmingham, AL
References:
1. Hughes M, Cartwright C. Lesbian, gay, bisexual and transgender people’s attitudes to end-of-life decision-making and advance care planning. Australas J Ageing. 2015;34 Suppl 2:39-43. doi:10.1111/ajag.12268.
2. Welch LC, Teno JM, Mor V. End-of-life care in black and white: race matters for medical care of dying patients and their families. J Am Geriatr Soc. 2005;53(7):1145-1153. doi:10.1111/j.1532-5415.2005.53357.x.
3. Sanders JJ, Durieux BN, Johnson KS, et al. Acceptability of a serious illness conversation guide to Black Americans: results from a focus group and oncology pilot study. Palliat Support Care. 2023;21(5):788-797. doi:10.1017/S1478951522001298.
Source: Izumi SS, Garcia E, Kualaau A, et al. Advance care planning as perceived by marginalized populations: willing to engage and facing obstacles. PLoS One. 2024;19(4):e0301426. doi:10.1371/journal.pone.0301426.
Access this article on PubMed.