Purkey Eva, MacKenzie Meredith
From the Department of Family Medicine, Queen's University, Kingston Ontario, Canada (EP, MM); Street Health Centre, a part of Kingston Community Health Centres, Kingston Ontario, Canada (MM).
J Am Board Fam Med. 2019 Nov-Dec;32(6):858-867. doi: 10.3122/jabfm.2019.06.190093.
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.
Qualitative phenomenological study involving focus groups and in-depth interviews with 31 people with lived experience of homelessness. Additional sociodemographic data collected from participants.
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.
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.
在任何一个特定夜晚,有3.5万加拿大人无家可归,他们的死亡率远高于普通人群。研究已确定无家可归者在获得临终关怀方面存在障碍,包括后勤障碍和耻辱经历。本研究旨在探索在无家可归或居住条件脆弱的情况下,围绕死亡的经历、目标、恐惧和希望。
采用定性现象学研究方法,对31名有过无家可归经历的人进行焦点小组讨论和深入访谈。从参与者那里收集了其他社会人口统计学数据。
主题包括对死亡和濒死的广泛经历、与死亡率的关系、对善终的看法以及对临终关怀的期望。参与者提出了改善临终关怀的建议,包括由有过无家可归和药物使用经历的人提供的护理;以外展服务形式或在一个温馨、灵活的机构环境中提供的护理;尽量减少耻辱感并增强尊严的护理;以及尊重人们在生命末期使用药物愿望的护理。
有过无家可归经历的参与者明确表达了他们对临终关怀的愿望和需求。他们广泛接触到死亡,认为当前的姑息治疗系统无法满足他们的需求。在这一人群能够获得姑息治疗服务之前,有必要提出包括减少伤害和以公平为导向的医疗保健,以及外展服务和住院服务相结合的系统变革建议。