Identifying Barriers and Accessibility Recommendations for Individuals of the Vancouver’s Downtown East Side Community in Accessing End-of-Life Care

Abstract

Overview: End-of-life care for the individuals of Vancouver’s Downtown East Side (Vancouver’s DTES) community is an essential area of health care practice that aims to bring dignity to highly marginalized and vulnerable individuals.  This research study was completed in conjunction between the University of British Columbia’s (UBC) School of Social Work and May’s Place, a hospice operated by The Bloom Group located in Vancouver’s DTES.  This study received ethics clearance from the UBC Office of Research Ethics to be completed in the low-risk category. The purpose of this qualitative research study was twofold; it aimed to examine the barriers individuals of Vancouver's DTES community face in accessing end-of-life care, particularly at May’s Place, and it attempted to identify potential recommendations on how to make end-of-life care services more accessible to this same population. This study utilized the frameworks of biopsychosocial-spiritual theory and trauma-informed practice to ensure the information collected reflected all aspects of individuals’ lives, and held the values of collaboration and transparency.  Previous literature on this topic showed the main categories of barriers marginalized and vulnerable populations experience in accessing end-of-life care: a lack of trust in health care providers caused by previous negative experiences, a lack of appropriate services, a highly vulnerable lifestyle where survival needs are prioritized, and substance use.   

Methodology: The target population for this study included professionals within British Columbia’s Lower Mainland who are currently employed or have been employed within the past five years, for a minimum of six months, in either the field of end-of-life care or with an organization servicing the Vancouver’s DTES community, and who could complete the interview in English. Due to their high vulnerability, service users and Indigenous individuals were outside of the approved ethics clearance, and therefore, were excluded from this study.  The recruitment method utilized was non-probability sampling, more specifically, purposive and snowballing. The study had a sample size of six participants, all of whom consented to participate in audio-recorded semi-structured interviews; five of these interviews were completed in-person with the additional interview being completed via telephone.  There were no foreseen risks with this study; however, a list of supportive resources was available to participants upon request. At the end of each interview, participants received an honorarium for sharing their time and knowledge.  To analyze the data, the student researchers employed the use of thematic analysis (Braun & Clark, 2006). All transcripts were transcribed verbatim before two rounds of coding were completed; the first, being descriptive and the second, being thematic coding (Braun & Clark, 2006; Saldaña, 2013).  The student researchers developed the final themes through consensus in using an inductive and semantic approach (Braun & Clark, 2006).

Results: The data yielded five major themes: Barriers to Accessibility, Strengths of May’s Place, Accessibility Recommendations, Sense of Responsibility, and Other Organizations and Cities. Participants corroborated the existing literature in identifying previous negative experiences with health care staff, a lack of appropriate services, and substance use, as obstacles in individuals accessing end-of-life care. Additionally, participants identified a range of personal barriers that could also contribute to an individual’s ability to access appropriate end-of-life care.  In terms of current strengths of May’s Place, participants provided positive feedback regarding its physical location, policies and practices, and staff.  As for recommendations, participants highlighted the need for the further implementation of harm reduction practices, appropriate training and staffing levels, increased collaboration between health care providers, and offered specific suggestions for May’s Place. Of note, all participants demonstrated a sense of responsibility in creating solutions to better serve this patient population. Lastly, participants provided information of other organizations and cities that are working from harm reduction approaches in serving marginalized and vulnerable populations during the end of their lives.

Discussion and Limitations: The student researchers believe the results of this study demonstrates that these chronic barriers are consistent across multiple geographic locations and are not being addressed by current health care systems. Despite the strong sense of responsibility displayed by health care providers, they continue to work in conditions that cause moral distress by not being able to provide appropriate care to their patients. There were several limitations within this study, including concerns with the research design, reliability, and validity, particularly with section bias and instrumentation. Therefore, it is recognized that these results may not be transferable outside of May’s Place or Vancouver’s DTES community. 

Future Directions and Conclusion: The student researchers believe it would benefit May’s Place to continue implementing more robust harm reduction practices, and to give further thought on how to increase collaboration among health care providers, perhaps through the use of a blended model.  In closing, this research study demonstrates the vital need for further research and changes to current practice to ensure individuals of Vancouver’s DTES community have access to inclusive care and a dignified end of life.