Death Is a Social Justice Issue

Abstract

All too often, palliative care services are not responsive to the needs of those who are doubly vulnerable, being that they are both in need of palliative care services and experiencing deficits in the social determinants of health that result in complex, intersecting health and social concerns. In this article, we argue for a reorientation of palliative care to explicitly integrate the premises of health equity. We articulate the philosophical, theoretical, and empirical scaffolding required for equity-informed palliative care and draw on a current study to illustrate such an approach to the care of people who experience structural vulnerabilities.

“Just too busy living in the moment and surviving”: barriers to accessing health care for structurally vulnerable populations at end-of-life

“…Ethnographic methodologies focus on qualitatively exploring the nature of particular socio-cultural phenomena in the environments where they occur [42]. Equity-based approaches aim to critically examine whether the distribution of resources, or outcomes of various social processes, are fair among diverse groups of people [27, 28]. Health inequities refer to those unfair, unjust, or potentially remedial differences in health or access to healthcare that result from structural arrangements [43].…”

“…Health inequities refer to those unfair, unjust, or potentially remedial differences in health or access to healthcare that result from structural arrangements [43]. Theories of social justice challenge inequities by critically examining complex social and power relations and the ways in which they contribute to the development of structural inequities [26–28]. From this theoretical positioning, the lens of intersectionality was also applied, which aims to explore the complex simultaneous and interdependent interactions between types of social difference and identity (e.g., gender, sex, race, socio-economic status, mental health, etc.…”

“…Although the level of systemic suffering and negative health and life expectancy outcomes of structurally vulnerable populations denote an increased need for care, barriers experienced in accessing such care are likely the highest [25], particularly at EOL. Existing disparities in access to palliative care emerge partly from deep-rooted assumptions regarding who needs such services [28]. The majority of those accessing palliative care tend to share similar socio-demographic and economic profiles (e.g., are diagnosed with diseases such as cancer, with more predictable trajectories, come from dominant social groups, have strong family and community connections, and are stably housed [16, 29, 30].…”

“…The majority of those accessing palliative care tend to share similar socio-demographic and economic profiles (e.g., are diagnosed with diseases such as cancer, with more predictable trajectories, come from dominant social groups, have strong family and community connections, and are stably housed [16, 29, 30]. However, many dying people fall outside this demographic – those who are experiencing homelessness or unstable housing, poverty, mental illness and substance use, and stigmatized diseases such as HIV/AIDS and Hepatitis C. Their experiences remain largely unnoticed and their needs neglected [28].…”

Delay in commencement of palliative care service episodes provided to Indigenous and non-Indigenous patients: cross-sectional analysis of an Australian multi-jurisdictional dataset

“…This is the first quantitative multi-jurisdictional investigation of health service quality for Indigenous Australians in palliative care. The dual vulnerability experienced by socially disadvantaged persons with a life-limiting illness [32] underscores the importance of investigating equity of palliative care service provision. Our findings provide reassurance that timeliness of episode-by-episode care provision to Indigenous Australians within the majority of specialist palliative care services nationwide that provide data to PCOC has met the established benchmark overall, while suggesting modest disparities affecting this population.…”