Article Text
Abstract
Background Vulnerable populations are highlighted across Australian national palliative care (PC) and end-of-life care (EOLC) documents to increase care equity and inclusivity; however, there are disparities in listed populations across these documents, and justification of inclusion is limited. This narrative review aims to describe current literature about the EOLC experiences of the vulnerable populations listed across these care-influencing documents from the community perspective (comprising the perspectives of decedents, family members and caregivers).
Methods Separate literature searches were conducted for the fifteen vulnerable populations identified across three key national EOLC documents (Palliative Care Standards 2018, the Australian Government Department of Health’s ‘Exploratory Analysis of Barriers to Palliative Care’ and the National Consensus Statement on ‘Essential Elements for Safe and High-Quality End-of-Life Care’). Eight vulnerable populations were included for discussion as their searches returned one or more relevant articles. As the literature was almost entirely descriptive, a concept-based approach was used to describe the EOLC experiences of included populations. Concepts were synthesised from key and recurring topics throughout the literature.
Results Agency and communication were critical areas for improvement amongst all included vulnerable populations. Concepts identified for the eight vulnerable groups included were as follows: for people living in rural and remote settings, concepts included EOLC designed for metropolitan settings, limitations of local services and interventions in rural communities; for people with dementia concepts included comfort of people with dementia, carer experiences and access to PC; for people with culturally and linguistically diverse backgrounds concepts included culture and decision-making, balancing death taboo and advance care planning discussions and trust in the healthcare system; for people living in residential aged care facilities (RACFs) concepts included advanced care planning in RACFs, place of death preference vs reality and inclusivity of RACFs; for Aboriginal and Torres Strait Islander Peoples concepts included fear of relocation to receive EOLC, culturally competent communication and resources and access to services in the community; for people who identify as lesbian, gay, bisexual or transgender (LGBT) concepts included expressing sexuality and gender identity, social isolation of people who identify as LGBT and substitute decision-makers and legal rights for people who identify as LGBT; for people living with disabilities concepts included access to disability-inclusive services, discrimination by healthcare professionals and disability support workforce and family limitations; for people experiencing incarceration concepts included balancing risk vs humanity and entitlements and inaccessible agency.
Implications Although enablers were identified throughout the literature, there was a predominant focus on barriers and negative experiences, perhaps speaking to the cumulative narrative for vulnerable populations. Evidence describing the experiences of the community was limited, with many studies conducted over twenty years ago, which illustrates a significant literature gap. Further research describing community experiences of EOLC across a broader range of settings for all identified populations is needed to inform future EOLC initiatives and standards and may assist in determining an accepted set of vulnerable populations across guidelines.