ArticlePloS one2024
Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles.
Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 13 citations in OpenAlex.
- Patient perceptions of advance care planning within primary care: a systematic review of facilitators and barriers.BMC primary care · 2025Pooled it
- Understanding Advance Care Planning in oncology: Barriers, perceptions, and pathways toward patient-centered decision-making.Palliative & supportive care · 2026Article
- 'I dream of the airplane, but I cannot board it': Exploring end-of-life aspirations with people who have lived experiences of homelessness.Palliative care and social practice · 2026Article
- Identifying the pathways to increased death literacy: Building a conceptual causal model through a mixed-methods pragmatic ESC-DAGs approach.Palliative care and social practice · 2026Article
- Perceived barriers and facilitators of accessing statutory and non-statutory services, in disadvantaged communities, in England: a co-produced qualitative review.Public health reviews · 2026Review
- Navigating the path to planned endings: understanding Chinese older adults' engagement with advance care planning through constructivist grounded theory.BMC medical ethics · 2025Article
- Experiences of care home staff in the delivery of heart failure care: a grounded theory.BMC geriatrics · 2025Article
- Post-Acute Transition to Home With Supportive Care (PATHS): A Novel Nurse Practitioner-Led Telehealth Intervention to Improve End-of-Life Oncology Care.Journal of pain and symptom management · 2025Article
Corrections and comments
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Authors and funding
8 authors at 6 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHealth 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.
aimTo describe how patients from marginalized populations experience and perceive ACP.
methodsWe 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.
resultsThe 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.
conclusionPatients 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.