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Experiences of Palliative Health Care for Homeless and Vulnerably Housed Individuals

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Experiences of Palliative Health Care for Homeless and Vulnerably Housed Individuals J Am Board Fam Med: first published as 10.3122/jabfm.2019.06.190093 on 8 November 2019. Downloaded from ORIGINAL RESEARCH Experiences of Palliative Health Care for Homeless and Vulnerably Housed Individuals Eva Purkey, MD, MPH, CCFP, FCFP and Meredith MacKenzie, MD, BSc, CCFP (AM), FCFP 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 improv- ing 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 pallia- copyright. tive care services will be accessible for this population. (J Am Board Fam Med 2019;32:858–867.) Keywords: Canada, Delivery of Health Care, Focus Groups, Harm Reduction, Homeless Persons, Housing, Palliative Care, Qualitative Research, Substance-Related Disorders, Terminal Care Thirty-five thousand Canadians are homeless on tancy for homeless persons is estimated to be be- any given night and at least 235,000 Canadians tween 42 and 52 years.2 Mortality rates among http://www.jabfm.org/ experience homelessness in a year.1 Indigenous homeless populations are much higher than the people are overrepresented.2 Average life expec- general population.3 Despite exhibiting signs and symptoms of extensive disease, homeless individu- als often do not receive palliative care because of This article was externally peer reviewed. the challenges posed by their immediate environ- Submitted 12 March 2019; revised 4 May 2019; accepted 7 ment. Between 44% and 60% of people who expe- May 2019. on 29 September 2021 by guest. Protected From the Department of Family Medicine, Queen’s Uni- rience homelessness will use illicit substances in versity, Kingston Ontario, Canada (EP, MM); Street Health their lifetime.1,4,5 Despite a keen interest in ad- Centre, a part of Kingston Community Health Centres, vanced care planning6–8 and specific preferences Kingston Ontario, Canada (MM). Funding: Funding for this project was received by the for location of death, homeless patients often die in South East Local Health Integration Network (SELHIN) in acute care hospital settings.9,10 Ontario, Canada. Conflict of interest: none declared. Homelessness is often not experienced in the Corresponding author: Eva Purkey, MD, MPH, CCFF, traditional or commonly understood sense (ie, one FCFP, Department of Family Medicine, Queen’s Univer- sity, 220 Bagot St, Kingston, Ontario K7L 3G2, Canada is living on the streets) and the terms, “homeless” ͑E-mail: [email protected]). or “vulnerably housed,” can be defined to include those who live in substandard conditions not fit for human occupation; in temporary, transient, and See Related Article on Page 847. unstable accommodations; in shelters; and/or in 858 JABFM November–December 2019 Vol. 32 No. 6 http://www.jabfm.org J Am Board Fam Med: first published as 10.3122/jabfm.2019.06.190093 on 8 November 2019. Downloaded from housing situations that are precarious (subject to to those who are homeless or vulnerably housed. being lost at any time).11 Inclusion criteria included a past or present history The barriers to accessing palliative care for peo- of homelessness but not necessarily a history of ple experiencing homelessness or in vulnerable experience with the palliative care system. It was housing are documented both by our study and by anticipated that people who were both palliative others.3,10,12–15 These include logistic barriers such and homeless would be a difficult to access, and that as lack of telephone to make appointments, lack of many homeless or vulnerably housed participants transportation to health care services and lack of would have had experiences with palliative and housing to receive home care, as well as care avoid- end-of-life care through friends or relatives and ance related to experiences of stigma within the would be able to effectively comment on the needs/ health care setting. Hearing directly from people gaps of existing palliative-care services. Snowball who have experienced homelessness concerning sampling was used to recruit further participants. their fears and hopes about death and dying, their Participants completed an anonymous survey col- experiences interfacing with the health care system lecting basic demographic variables identified as in the context of palliative care, and their own significant15–18 including gender, ethnicity, educa- proposed solutions to create a palliative care system tion level, housing experience, service use, self- that is accessible to them has the potential to reported mental health and health conditions, and change practitioner and policy-makers’ perspective substance use history. Six focus groups were held on the “one size fits all” approach of traditional with 2 to 7 participants, along with 4 in-depth medical services. interviews, all lead by research assistants or by the Through analysis of the narratives of people principle investigator. The intent was to run focus with lived experience, this study, funded by the groups exclusively, but due to scheduling chal- South East Local Health Integration Network in lenges, several participants were interviewed indi- Ontario Canada, explores the goals, fears, aspira- vidually. Both interviews and focus groups used the copyright. tions, experiences and hopes when it comes to liv- same semistructured interview guide exploring ing and dying in the precarious setting of home- themes related to how homelessness affects access to lessness or vulnerable housing. Many of the study palliative care, the impact of substance use, thoughts findings are consistent with the literature on home- on death and dying, and recommendations to im- lessness and palliative care; however, our study in- prove palliative care for vulnerably housed people. cludes novel information related to palliative care and homelessness in the context of substance use as Theme saturation was reached in that no new themes well as participant suggestions for system redesign. were appearing in the interviews and focus groups. Thirty-one people participated, and focus groups and http://www.jabfm.org/ Methods interviews lasted between 20 and 90 minutes. Partic- Study Design ipants were given a stipend of $50 for their participa- This article reports a subset of the qualitative find- tion. ings of a larger study that included a survey of health and social service providers (HSSPs), in- depth interviews with HSSP key informants, as well Data Analysis as in-depth interviews and focus groups with peo- Quantitative survey data are reported in Table 1, on 29 September 2021 by guest. Protected ple with lived experience of homelessness. These Table 2, and Table 3. surveys and interviews occurred between January This study used a phenomenological approach and August 2018. Data from the HSSP surveys and to explore the experience of end-of-life care interviews is reported elsewhere. This project re- among people with a lived experience of home- ceived Queen’s University Health Sciences and Af- lessness. Phenomenology allows for the explora- filiated Teaching Hospitals Research Ethics Board tion of shared experiences of a group of individ- 19 approval. uals around a specific topic, in this case, end- of-life and palliative care. Researchers used a Participants transformative framework to elevate the voices of Persons with experience of homelessness were re- people experiencing homelessness.19 The find- cruited from agencies mandated to provide services ings reported here relate to the in-depth inter- doi: 10.3122/jabfm.2019.06.190093 Palliative Health Care for the Homeless 859 J Am Board Fam Med: first published as 10.3122/jabfm.2019.06.190093 on 8 November 2019. Downloaded from Table 1. Demographics and Housing Status Table 1. Continued Response, Response, Variable %(nϭ 31) Variable %(nϭ 31) Age, years Four times 6.9 Ͻ21 0.00 Five times 6.9 21 to 29 6.4 More than 5 times 17.3 30 to 39 35.5 Not sure 13.8 40 to 49 32.3 No answer 9.7 50 to 59 16.1 How long has it been since you had a permanent 60 to 69 9.7 place to stay? 70ϩ 0.00 Days 22.6 How to you identify? Weeks 3.2 Male 58.0 Months 9.7 Female 38.7 Years 29.0 Transgender 0.0 No answer (Max time reported homeless was 7 38.7 years) Prefer not to answer 3.3 What is preventing you from having permanent What community do you live in? housing now? Urban 93.6 Unemployed 6.5 Rural 3.2 Not enough income 29.0 Semi-rural 3.2 Rents too high 25.8 Are you First Nations, Inuit or Metis? Family/relationships conflict/breakdown 12.9 Yes 12.9 Eviction 12.9 No 83.9 Mental health problems 9.7 No answer 3.2 Physical health problems or disability 9.7 Highest level of education achieved I don’t want housing 3.2 Ͻ copyright.
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