How the social determinants of health shape EOL experiences for vulnerable population and their care providers

Dr. Kelli Stajduhar presents at EAPC 2017

Presentation at the European Association of Palliative Care 15th World Congress 2017, Madrid, Spain
Dr. Kelli Stajduhar & Ashley Mollison
Victoria, BC, Canada

On May 20th, Dr. Kelli Stajduhar and Ashley Mollison presented key study findings from the Equitable Access to Care Study, a CIHR-funded, community-academic study on the end-of-life (EOL) experiences of people living in poverty, homeless, and facing barriers to access and quality of care at EOL. We were included in the “Special Patients Group” session among fascinating presentations reporting on innovative palliative care models for people who are homeless, LGBT, and living with disabilities.

Mollison began the presentation with a powerful narrative describing the experiences of George, a study participant living with advanced cancer, facing homelessness, food insecurity, poverty, isolation, and transportation barriers that significantly impacted his EOL experience including ability to get good pain and symptom management and have choice about where and how he died. Stajduhar followed with identification of the issue, description of study methods, and key study findings from interviews and repeated ethnographic observations with 25 structurally vulnerable people, 25 support people (e.g., street family, friends, partners), and 73 service providers in Victoria, BC, Canada. Below is a transcript of the presentation.

The issue

People impacted by structural inequities (inadequate housing, racialization, classism, stigmatization of substance use, mental health issues, etc.) experience persistent health inequities and challenges in accessing health services including palliative care. Traditional models of palliative care are not sufficient to meet the needs of people with “structural vulnerabilities”. Dying and death, while occurring in some specialized palliative care settings, is more likely to occur in acute care, outdoors on the street and in vehicles, and/or in shelters or transitional housing, and in some cases “places unfit for human habitation”. Research is scant on the issue and most is from the perspective of health service providers with very little on what people experiencing structural vulnerabilities experience at EOL.

The survival imperative and the problem of identification

Structurally vulnerable people and their service providers are focused on day-to-day survival, addressing acute concerns and crises, and the social determinants of health (SDOH). As a result, awareness of a palliative approach and the ways in which it could benefit clients at the EOL was not always realized. Because of the rates of death in the homeless community, there was a perception among health and social service providers that the majority of people who are homeless are at risk of dying. Yet, the primary care providers of structurally vulnerable people (e.g., housing and outreach workers) were not trained in identifying those on a dying trajectory or those who could benefit from a palliative approach. Because of deficits in the SDOH, identification of dying without medical records was a challenge.

Even for participants who identified as dying and receiving palliative care, SDOH needs were often overlooked leading us to the finding that addressing deficits in housing; food security; income; transportation; and other SDOH is essential to facilitating access to quality palliative care. Much of the work that community service providers engaged in, even while a person was on a dying trajectory, was focused on obtaining and helping people maintain their housing, facilitating transitions of people and their belongings from one place to another, and dealing with income and food security issues.

The silo-ing influence of care systems and resultant navigational barriers

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). These systems are siloed as a result of funding and administration that channels funding for distinct services. This had two major effects on the EOL experiences of people in our study:

  1. There was largely inadequate communication, coordination, and continuity between systems (e.g., housing, income, health care, palliative care). Lack of continuity and consistency in palliative care service providers created barriers to care for this community, in which relationships of trust are paramount.  
  2. Death and dying was seen as the domain of palliative care and not housing where people lived. As a result of this siloing, as well as risk management policies, people were often evicted as they declined physically or cognitively and wound up in acute care, and moved multiple times in their final months of life.

This finding spoke to the need for care coordination to manage not only the specialized palliative needs of the structurally vulnerable person, but also the SDOH needs that were present until the EOL.

Risk management as a barrier to dying at home

Stigmatization of substance use, mental health issues, and behaviour issues impacted the experiences of structurally vulnerable people in our study. A lack of appropriate, affordable, and adequate housing, combined with risk management policies often 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.

While many structurally vulnerable people preferred to stay in their homes surrounded by their workers, friends, and family as their health declined, some participants were housed in single occupancy units, supportive housing facilities, or shelters that were deemed unsafe for home support and/or home care nurses to attend, and in some case were completely restricted. We found that housing workers were often going above and beyond their job descriptions, including doing personal care, accepting meds, etc. to keep people in the community, and in housing deemed ‘unsafe’ for health care professionals, which took an immense toll on front line workers. The service providers in our study experienced distress and frustration and burnout witnessing inequities and injustices in the care or lack of care for their clients.

This finding spoke to the need better policy and education both within traditional healthcare/palliative care & housing for structurally vulnerable people, capacitating the community to support people to die the way and in the place they want to.

Making up for a lifetime of injustice

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. By and large, when people received a “legitimate” (palliative) diagnosis and were connected with service providers who had a palliative orientation, services came around them quickly and efficiently. People experienced good care in a way that they had never experienced care through health and social services systems including being believed, getting pain needs met, getting access to additional income and services, and being surrounded by care providers that were compassionate, kind and invested in their care.

Conclusions

The assumptions that palliative care services are based on – income, housing, unpaid support people – do not work for this population. Innovations are needed to capacitate the community as a whole to respond to the palliative care needs of structurally vulnerable people and their caregivers. For instance, mechanism for identification of structurally vulnerable people who are dying is crucial. There is a strong need to engage social service providers who are most connected to the population and people experiencing structural vulnerabilities to participate in developing systems that will best work for them.

Next steps

We are currently working with the Palliative Outreach Resource Team (PORT), a group of service providers in Victoria, BC, Canada who are networking to improve access to and the quality of palliative care for structurally vulnerable people, to create our final project report and determine next steps. Please see our first study publication Death is a social justice issue: Perspectives on equity-informed palliative care here [https://www.ncbi.nlm.nih.gov/pubmed/27608146]

Thank you to CIHR for funding this research and iPANEL (Initiative for a palliative approach in nursing: Evidence and leadership) and Institute on Aging & Lifelong Health (IALH) for support of the project.

For questions or comments about this study, please email equitableaccess@uvic.ca