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BMC Palliative Care
Published in: BMC Palliative Care 1/2019

Open Access 01-12-2019 | Care | Research article

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

Authors: K. I. Stajduhar, A. Mollison, M. Giesbrecht, R. McNeil, B. Pauly, S. Reimer-Kirkham, N. Dosani, B. Wallace, G. Showler, C. Meagher, K. Kvakic, D. Gleave, T. Teal, C. Rose, C. Showler, K. Rounds

Published in: BMC Palliative Care | Issue 1/2019

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Abstract

Background

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. 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.

Methods

Ethnography 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.

Results

Five 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.

Conclusions

Findings 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.
Footnotes
1
In the Canadian context, colonization refers to the policies and practices of removing Indigenous peoples’ from their land, culture and community. For instance, residential schools for Indigenous people in Canada date back to 1870 with the last school closing in 1996. Over 130 residential schools were located across the country, which were government-funded and church-run, and set up to eliminate parental involvement in the intellectual, cultural, and spiritual development of Indigenous children [63].
 
2
All participants were characterized as homeless, which by the Canadian Observatory on Homelessness [64]. include a range of housing and shelter circumstances. For example, some participants were unsheltered (e.g., absolutely homeless or living on the street); Emergency sheltered (e.g., staying overnight in shelters for those who are homeless or impacted by family violence); provisionally accommodated (referring to those whose accommodation is temporary or lacks secure tenure); or at risk of homelessness (e.g., those whose economic/housing situation is precarious. In our study, some participants resided in supportive housing, which in British Columbia, involves a form of provisional accommodation by a non-profit housing provider, which offers a range of on-site, non-clinical supports such as life-skills training, connections to primary health care, and mental health or substance use services [65].
 
3
Within the British Columbian city where the study took place, policies exist which aim to protect community-based health support providers from risks, including second-hand smoke. In this jurisdiction, service provision is limited to two hours before or two hours after a person has had a cigarette in their home. This was found to create a number of challenges as many participants were active smokers and often did not remember the dates and times providers were scheduled to arrive. Furthermore, specific times were often not given by providers as their schedules often shifted in response to their clients and the care required of them on those days.
 
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Metadata
Title
“Just too busy living in the moment and surviving”: barriers to accessing health care for structurally vulnerable populations at end-of-life
Authors
K. I. Stajduhar
A. Mollison
M. Giesbrecht
R. McNeil
B. Pauly
S. Reimer-Kirkham
N. Dosani
B. Wallace
G. Showler
C. Meagher
K. Kvakic
D. Gleave
T. Teal
C. Rose
C. Showler
K. Rounds
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2019
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-019-0396-7

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