By Kelli Stajduhar, RN, PhD, Ashley Mollison, MA & Bernie Pauly, RN, PhD
People experiencing structural vulnerability such as poverty, homelessness, racialization, and criminalization and stigmatization of illicit drug use and/or mental health issues, suffer from more aging-related conditions than those living in homes who are decades older, and have disproportionately higher rates of chronic illness, poor health status, and die, on average, 20-25 years earlier than the general population. While studies of people experiencing structural vulnerabilities have made visible the challenges that people face in accessing health services, what is less evident – perhaps even slightly invisible from the public eye, and from even the eyes of the health care community – is what happens with such vulnerable people who are at the end of their lives.
Over the past 3 years our research team has engaged in an ethnographic study examining access to end-of-life care for populations impacted by structural vulnerability. We longitudinally followed 25 people over two and a half years to track their access issues and experiences, conducted almost 300 hours of participant observation with vulnerable people and their service providers, interviewed their primary support people, and conducted key informant interviews in the community. We partnered with the Palliative Outreach Resource Team (PORT) and Victoria Hospice for study guidance and knowledge translation. PORT is a group of healthcare providers and community partners in Victoria who are networking to improve access to and the quality of hospice palliative care for people who are nearing end-of-life and who live on the street or are housed unstably.
We are currently in process with our study partners of crafting recommendations and developing a model of palliative care for people experiencing structural vulnerability. Emergent findings include:
• EOL care needs of structurally vulnerable people cannot be met without addressing the Social Determinants of Health (SDOH). Addressing deficits in housing; food security; income; transportation; and other SDOH was essential to facilitating access to quality palliative care.
• When people are connected with a physician who has a palliative orientation and understanding of SDOH they experience improved access and quality of life at EOL. When people received a “legitimate” (palliative) designation and were connected with service providers who had a palliative orientation, services came around them quickly and efficiently. In many cases, palliative care was the best care that people had experienced in their lives.
• A lack of appropriate, affordable, and adequate housing, combined with risk management policies, meant that people could not ‘age in place’ and were moved, most often into acute care, as their medical needs increased or as they approached EOL. Some participants were housed in SROs, supportive housing facilities, or shelters that were deemed unsafe for home support and/or home care nurses to attend creating a barrier to receiving EOL care.
• Significant barriers to access & quality of care meant that structurally vulnerable people were diagnosed late in when treatment options were no longer available and the benefits of a palliative approach were not fully realized.
• Lack of trust in health care relationships and with the health care system and avoidance of care was particularly relevant for those who had experienced stigma & discrimination as a result of substance use, mental health, and ‘behaviour’ issues, poverty & homelessness, racialization, and trauma associated with colonial and criminal institutions.
• Structurally vulnerable people have to engage with and navigate multiple systems in order to gain access to care (e.g., social assistance, shelter & housing, food banks). There was largely inadequate communication, coordination, and continuity between systems (e.g., housing, income, health care, palliative care). This is an effect of the silo-ing of systems as a result of funding and administration that channels funding for distinct services. Lack of continuity and consistency in palliative care service providers created barriers to care for this community, in which relationships of trust are paramount.
• Despite service providers in housing, shelter, and social services facing high rates of death in the population they serve, there was often a feeling of unpreparedness when it came to having conversations about death, understanding a person’s diagnosis & trajectory, understanding how the palliative care system works, or processing their own feelings of loss and grief.
Our next steps are to work with our community partners to develop a model of palliative care for structurally vulnerable people in Victoria. A key part will be the development of practice support tools for service providers (e.g., housing, outreach, and inner city health workers) on how to identify people in need of a palliative approach, common disease trajectories, and referral methods.
For more information about this study and Dr. Kelli Stajduhar’s other studies on palliative and end of life care, visit:
https://www.uvic.ca/research/groups/peol/
From the 2017 Spring & Summer Communiqué — Research Edition
Recent Comments