BACKGROUND: People experiencing homelessness have significantly shorter life expectancies and higher rates of morbidity and mortality than the general population. Many barriers have been identified to providing palliative care to this population. This study examines health and social service providers' experiences providing end-of-life care to people experiencing homelessness, seeking recommendations to improve both patient and provider experience.
METHODS: Qualitative study using phenomenological approach. Qualitative and quantitative surveys with 136 health and social service providers in Ontario's South East Local Health Integration Network, in-depth interview with 10 key informants.
FINDINGS: Participants approached the end-of-life care of people experiencing homelessness from a framework of dignity and respect. Themes included barriers to end-of-life care internal to the health care system; care avoidance; the experience of stigma for this population when accessing end-of-life care; lack of provider information and awareness on how to provide care for marginalized groups, how to provide care in the context of substance use, and how to assist clients in accessing the formal palliative care system; and the need for harm reduction approaches to end-of-life care for persons experiencing homelessness.
DISCUSSION: Focusing on harm reduction, and using the framework of Equity-Oriented Health Care to make systemic, cultural, and policy changes to develop a palliative-care system for persons experiencing homelessness may improve care experience for both patients and providers.
BACKGROUND: Thirty-five thousand Canadians are homeless on any given night, and mortality rates are much higher than for the general population. Studies have identified barriers to accessing end-of-life care among the homeless, including logistic barriers and experiences of stigma. This study seeks to explore the experience, goals, fears, and hopes surrounding death in the setting of homelessness or vulnerable housing.
METHODS: Qualitative phenomenological study involving focus groups and in-depth interviews with 31 people with lived experience of homelessness. Additional sociodemographic data collected from participants.
FINDINGS: Themes included extensive experience with death and dying, relationship with mortality, ideas for a good death, and desires for end-of-life care. Participants presented suggestions for improving end-of-life care including care that was delivered by people with lived experience of homelessness and substance use; care that was provided either as outreach or in a welcoming, flexible institutional environment; care that minimized stigma and enhanced dignity; and care that respected people's desires to use substances at the end of life.
DISCUSSION: Participants with lived experience of homelessness were articulate in their desires and needs for end-of-life care. They have extensive exposure to mortality and feel that their needs are not met by the current palliative care system. Recommendations for system change that include harm reduction and equity-oriented health care, as well as a combination of outreach and inpatient services, are necessary before palliative care services will be accessible for this population.