Experiences of Palliative Health Care for Homeless and Vulnerably Housed Individuals

Abstract

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 equityoriented health care, as well as a combination of outreach and inpatient services, are necessary before palliative care services will be accessible for this population.

Experience of emergency department use among persons with a history of adverse childhood experiences

“…Given the care concerns highlighted even among the more stable patients that were ultimately included in the study, our results likely under-represent some of the challenges faced by the most vulnerable (and thus most emotionally dysregulated) patients when they seek care in the ED. This hypothesis is also consistent with literature on healthcare experiences among particularly stigmatized groups [39,40].…”

Homelessness and Vulnerably-Housed Defined: A Synthesis of the Literature

“…The study samples were predominantly White, middle-aged males, except one that reported a sample of 67.3% female (Baggett et al, 2018), and six publications from the SHADOW study, which included only women, with a majority of the women (72%) identifying as non-White (Riley et al, 2014). The sample sizes ranged from 31 (Purkey & MacKenzie, 2019) to 434,240 participants (Byrne et al, 2019). Most samples were exclusively H/VH participants, except for one study (Baggett et al, 2018) that included the general population who accessed federally funded community health centers.…”

“…Although Riley et al (2014) and Purkey and MacKenzie (2019) did not provide separate definitions of homelessness and VH, they included the extrapersonal factors of living environment and housing history in their combined definition for H/VH. Sleeping in public spaces or a homeless shelter (Purkey & MacKenzie, 2019; Riley et al, 2014) and living in substandard conditions unfit for human habitation (Purkey & MacKenzie, 2019) were extrapersonal stressors included in the definitions of H/VH in these studies. Additionally, those at risk of losing their current housing accommodations were an inclusion criterion in one study (Purkey & MacKenzie, 2019), which aligns with the extrapersonal stressor of recent housing history from the definition of VH.…”

Connections and Biases in Health Equity and Culture Research: A Semantic Network Analysis

“…For example, people experiencing homelessness or vulnerable housing are often marginalized and are known to face barriers to accessing appropriate healthcare services ( 9 ). Although changes have been recommended in the complex health systems, so that it should be more equitable, more sensitive and empathic, and more informed about the traumatic situations experienced by homeless people, barriers related to cultural aspects are barely mentioned in those key documents ( 116 – 118 ). Similar patterns can be seen in the studies of other conditions of vulnerability and adverse circumstances that apparently seem disconnected from their own cultural aspects or they seem irrelevant for health equity ( 119 ).…”