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

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.

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life

“…These experiences are simultaneously and differentially shaped by racism, settler colonialism, experiences of trauma and violence, social isolation, stigma associated with mental health issues or cognitive impairments, substance use, experiences of incarceration and disability. 3,5,6 At the end-of-life, people experiencing structural vulnerability face significant barriers in accessing care. 4,11 Findings from our previous work indicates that barriers to care for these populations include the need to prioritize daily survival, the normalization of death and dying in their lives, problems associated with recognizing the need for palliative care, policies regarding professional risk and safety management, and disjointed health and social care systems.…”

End-of-life care for homeless people in shelter-based nursing care settings: A retrospective record study

“…Our study confirms previous findings that compared to the general population, homeless people die younger 1 – 11 and have complex comorbidities and a high symptom burden at the end of life. 19 – 22 , 24 , 34 – 37 Although the end of life was recognised for three-quarters of the homeless persons in our study, it was difficult to specifically predict prognoses and identify palliative care needs: whereas some patients revived prodigiously, others deteriorated rapidly once admitted to the shelter-based nursing care setting. This finding corroborates qualitative studies indicating that healthcare professionals experience end-of-life trajectories of homeless people to be especially capricious.…”

Homeless status and associations with treatment disparities for common skin conditions

“…Because two-dimensional (2D) culture systems often do not reflect the complexity of the in vivo context, three-dimensional (3D) bioprinting culture systems, which are more similar to in vivo processes, have been rapidly growing in recent years. 7 ADMSCs in a hydrogel scaffold structure differentiated faster than in 2D culture system, and the maximal effect was confirmed at 4 days after adipogenic induction. As shown in Figure 1(c), the fluorescence intensity of lipids significantly increased in human ADMSCs treated with magnolol compared with no treatment, shown by staining with BODIPY 493/503.…”

“…5 Potential explanations for these differing dermatologist behaviours may include lack of knowledge of available resources at the homeless clinic, implicit biases, concern for patient adherence or resource stewardship, or tendency to over-medicalize nonhomeless patients. 6,7 Adopting available guidelines for treating common skin conditions or improving physician training about homelessness and its effects may reduce treatment disparities.…”