How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review

Abstract

Background Advance care planning (ACP) is the process supporting individuals with life-limiting illness to make informed decisions about their future healthcare. Ethnic disparities in ACP have been widely highlighted, but interpretation is challenging due to methodological heterogeneity. This review aims to examine differences in the presence of documented ACP in individuals’ care records for people with advanced disease by ethnic group, and identify patient and clinician related factors contributing to this. Methods Mixed-methods systematic review. Keyword searches on six electronic databases were conducted (01/2000–04/2022). The primary outcome measure was statistically significant differences in the presence of ACP in patients’ care records by ethnicity: quantitative data was summarised and tabulated. The secondary outcome measures were patient and clinician-based factors affecting ACP. Data was analysed qualitatively through thematic analysis; themes were developed and presented in a narrative synthesis. Feedback on themes was gained from Patient and Public Involvement (PPI) representatives. Study quality was assessed through Joanna Briggs Institute Critical Appraisal tools and Gough’s Weight of Evidence. Results N=35 papers were included in total; all had Medium/High Weight of Evidence. Fifteen papers (comparing two or more ethnic groups) addressed the primary outcome measure. Twelve of the fifteen papers reported White patients had statistically higher rates of formally documented ACP in their care records than patients from other ethnic groups. There were no significant differences in the presence of informal ACP between ethnic groups. Nineteen papers addressed the secondary outcome measure; thirteen discussed patient-based factors impacting ACP presence with four key themes: poor awareness and understanding of ACP; financial constraints; faith and religion; and family involvement. Eight papers discussed clinician-based factors with three key themes: poor clinician confidence around cultural values and ideals; exacerbation of institutional constraints; and pre-conceived ideas of patients’ wishes. Conclusions This review found differences in the presence of legal ACP across ethnic groups despite similar presence of informal end of life conversations. Factors including low clinician confidence to deliver culturally sensitive, individualised conversations around ACP, and patients reasons for not wishing to engage in ACP (including, faith, religion or family preferences) may begin to explain some documented differences. Trial registration PROSPERO-CRD42022315252.

Acceptability and usability of the Planning Advance Care Together (PACT) website for improving patients' engagement in advance care planning

“…Future research aims to develop and tailor PACT to be available in multiple languages (e.g., Spanish) to ensure broader reach to a diverse patient population. Given that racial and ethnic differences in engagement in ACP may contribute to disparities in end-of-life care [ 44 , 45 ], this is critically important to consider in the future development of PACT as a tool to improve engagement in ACP. To enhance recruitment of minoritized groups in future studies, we will utilize provider referral and community-based outreach.…”

Across race, ethnicity, and language: An intervention to improve advance care planning documentation unmasks health disparities

“…The widened racial and ethnic disparity in accessible ACP documentation found in our analyses highlights the need for a conceptual framework (Figure 3) based on the socioecological model to identify factors that may influence EOL care and disparities in accessible ACP documentation rates. These include health literacy and illness severity at the patient level; 25 language and cultural concordance and provider comfort level in discussing EOL care; [26][27][28][29] accessibility of interpreters and availability of a palliative care team at the system (hospital) level; 26 and structural racism and systematic lack of access and education of EOL topics for historically marginalized groups at the structural level. Given that our institution (system) has hospital-wide access to interpreter use and accessible palliative care consultation, we hypothesize that the main drivers of inequitable implementation were due to provider and structural barriers.…”

Past Disparities in Advance Care Planning Across Sociodemographic Characteristics and Cognition Levels in the United States

“…Existing studies document trends of disparities over time among marginalized groups in relation to ACP. More specifically, structural disparities in accessing ACP have included issues of institutional racism, implicit bias, practitioner discomfort in discussing EOL planning, language differences, lack of cultural awareness (different beliefs and values) [12], exacerbation of institutional barriers/constraints, and pre-conceived notions of patients’ EOL wishes [13]. Moreover, healthcare providers are documented as avoiding ACP conversations with patients from racial and/or ethnic minority groups (such as Black, Asian, Hispanic, and Native American), non-English speaking patients with low incomes, and individuals with low health literacy [12].…”

“…Moreover, healthcare providers are documented as avoiding ACP conversations with patients from racial and/or ethnic minority groups (such as Black, Asian, Hispanic, and Native American), non-English speaking patients with low incomes, and individuals with low health literacy [12]. Individual-level issues related to disparities included lack of ACP awareness and knowledge; inability to make decisions; no surrogates available; patient discomfort in discussing ACP (religious, cultural, or individual factors); lack of trust in healthcare providers and the healthcare system [14]; family involvement; financial challenges; and faith and religious beliefs [13]. Despite this knowledge, existing studies do not examine past ACP disparities in relation to different cognition levels.…”