Abstract
BackgroundDespite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers. Most research examines access to EOL care for homogenous ‘normative’ populations, and as a result, the experiences of those with differing social positioning remain unheard. For example, populations experiencing structural vulnerability, who are situated along the lower rungs of social hierarchies of power (e.g., poor, homeless) will have unique EOL care needs and face unique barriers when accessing care. However, little research examines these barriers for people experiencing life-limiting illnesses and structural vulnerabilities. The purpose of this study was to identify barriers to accessing care among structurally vulnerable people at EOL.MethodsEthnography informed by the critical theoretical perspectives of equity and social justice was employed. This research drew on 30 months of ethnographic data collection (i.e., observations, interviews) with structurally vulnerable people, their support persons, and service providers. Three hundred hours of observation were conducted in homes, shelters, transitional housing units, community-based service centres, on the street, and at health care appointments. The constant comparative method was used with data collection and analysis occurring concurrently.ResultsFive significant barriers to accessing care at EOL were identified, namely: (1) The survival imperative; (2) The normalization of dying; (3) The problem of identification; (4) Professional risk and safety management; and (5) The cracks of a ‘silo-ed’ care system. Together, findings unveil inequities in accessing care at EOL and emphasize how those who do not fit the ‘normative’ palliative-patient population type, for whom palliative care programs and policies are currently built, face significant access barriers.ConclusionsFindings contribute a nuanced understanding of the needs of and barriers experienced by those who are both structurally vulnerable and facing a life-limiting illness. Such insights make visible gaps in service provision and provide information for service providers, and policy decision-makers alike, on ways to enhance the equitable provision of EOL care for all populations.
Highlights
Despite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers
It is estimated that only 14% of those in need receive palliative care [1], with barriers attributed to organizational factors and the deficiency of programs to deliver palliative care [2, 4]; the dearth of clear policies and educational programmes that teach palliative care [3]; a lack of public awareness about palliative care [4]; and family related issues, such as the absence of families’ willingness or ability to discuss and participate in palliative care [2]
Through the lens of intersectionality [12,13,14,15], structurally vulnerable populations are defined in this study as people living in poverty and who are experiencing some level of homelessness, while at the same time are experiencing various forms of racism, a history of or ongoing trauma and violence, social isolation, stigma associated with mental health issues, cognitive impairments, behavioural issues, substance use, interactions with the criminal justice system, and mobility issues and/or disability
Summary
Despite access to quality care at the end-of-life (EOL) being considered a human right, it is not equitable, with many facing significant barriers. Most research examines access to EOL care for homogenous ‘normative’ populations, and as a result, the experiences of those with differing social positioning remain unheard. Populations experiencing structural vulnerability, who are situated along the lower rungs of social hierarchies of power (e.g., poor, homeless) will have unique EOL care needs and face unique barriers when accessing care. Little research examines these barriers for people experiencing life-limiting illnesses and structural vulnerabilities. Access to quality care at end-of-life (EOL) is increasingly recognized as a human right [1], yet, many face significant barriers due to inequitable access [2,3,4]. A population’s or person’s positionality as structurally vulnerable is not static, but dynamic in that it can change over time in response to external forces (e.g., policy reforms, economic restructuring) that affect their access to social and material resources [11]
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