Department of Sociology and Criminology, University of Manitoba, 307-183 Dafoe Road, Isbister Building, Winnipeg, Manitoba, R3T2N2, Canada.
Department of Psychology, University of Manitoba, Winnipeg, Manitoba, R3T2N2, Canada.
BMC Palliat Care. 2022 Aug 1;21(1):139. doi: 10.1186/s12904-022-01023-1.
Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age.
Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care.
Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older.
Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.
在加拿大的医疗保健系统中，在家中死亡已被确定为一个关键的质量指标，通常被认为反映了整个加拿大公众的意愿。尽管其他国家的研究已经开始质疑这种假设，但加拿大缺乏全国范围内的严格证据。本研究通过探讨影响死亡地点偏好的三个因素来解决这一差距并加以扩展：情境严重程度（涉及症状和支持）、家庭义务观念和受访者年龄。
2019 年 8 月至 2020 年 1 月期间，通过在线小组招募了 2500 名来自普通人群的成年受访者。在线调查包括三个情景描述，分别代表不同严重程度的临终情景，这些情景根据症状管理和正式及非正式支持的可用性而有所不同。在每个情景描述之后，受访者会对该情景下每种死亡地点（家庭、急性/重症监护病房、姑息治疗病房、疗养院）的偏好进行评分。他们还提供了社会人口统计学信息，并完成了一项关于家庭在临终关怀方面义务观念的测量。
只有在轻度严重程度情景下，家庭才是明显首选的死亡地点。随着临终情景的恶化，对家庭死亡的偏好下降，而对其他选择的偏好增加，因此在严重情景下，大多数受访者更倾向于姑息治疗或临终关怀环境。这种模式在那些对家庭义务规范支持较少的受访者以及 65 岁及以上的成年人中尤为明显。
家庭并非普遍首选的死亡地点。公众，尤其是老年人和那些对家庭的期望较低的人，在面临家庭或正式支持较少、症状更为严重且无法控制的情况下，更倾向于选择姑息治疗环境。研究结果表明：a）公共政策和医疗保健系统质量指标需要反映公众偏好的细微差别；b）需要对临终关怀和姑息治疗环境进行充分投资；c）需要继续努力确保提供家庭为基础的正式服务，以帮助人们管理症状并满足他们对死亡地点的偏好。
