What Makes a Death Good? Examining Key Conditions to Guide Healthcare Decisions

Abstract Background: Although there is increasing interest in understanding and improving how humans die, the concept of a “good death" remains poorly understood. This creates barriers to crafting specific policies and care provision strategies that cater to dying individuals and their caregivers. This thesis aims to synthesize knowledge generated by scholars and professionals, in the healthcare field, to enhance our understanding of a good death. Specifically, it examines a minimum set of conditions that are deemed necessary by people around the globe for a death to be considered good. Methods: A collection of three studies is presented. Study 1) A bibliometric analysis of 1034 citations was completed in May 2020. This effort aimed to assess the state of biomedical literature on the topic of a good death through quantitative examination of publication patterns. MEDLINE and EMBASE were searched for articles containing “good death” or “dying well” in their titles or abstracts. Eligible citations were analyzed for key research indicators, including number of annual publications, journals of publications, language representation, research productivity by country, type of published output, study populations and prominent themes. Findings were reported following the PRISMA guidelines for meta-analysis. Study 2) A systematic review of existing systematic reviews within healthcare literature was conducted. This effort sought to aggregate information on conditions consistently deemed as necessary for a good death. A search of Medline, Embase, APA, PsycInfo and AMED yielded 275 potentially eligible reviews. Thirteen of these were selected based on the inclusion criteria, featuring 407 studies on views of several populations including children, patients, healthcare providers, cultural communities, elderly, frail adults with reduced agency, residents of long-term care facilities, rural residents, and other stakeholders involved in the dying process. Conditions for a good death appearing commonly in biomedical literature were identified and reported using PRISMA guidelines for systematic reviews. Study 3) Results from a survey asking healthcare professionals to prioritize conditions they would like to experience near the end of their own lives were analyzed. The survey aimed to utilize the unique position of healthcare providers given their experience and proximity to dying individuals. It was completed by 2,971 out of 3,495 eligible people (85% response rate). Most were female (79%) and between the ages of 26 - 45 years (70%). Almost two-thirds were clinical staff (65%; 13% physicians, 34% nurses; 18% other health professionals), while the rest were non-clinical personnel (managers, administrators, and support staff) working at healthcare facilities. Priorities near the end of life were examined. Conclusion: Thirteen conditions for a good death were identified to guide healthcare decisions around the event of death. These can be a starting point for global health systems to craft palliative and end-of-life care strategies. Insights from healthcare professionals should support efforts to minimize unnecessary medicalization of dying. Publication patterns unveil several gaps within existing literature that need to be filled with rigorous research to advance the conceptualization of a good death.

Keywords: aging
caregiver
dying well
end of life
good death
palliative care
Advisor: Gibson, Jennifer