Eliciting and honouring end-of-life care preferences : a multiple methods study on place of death

“Home” is not just a physical compound. It is our natural habitat where meaningful and intimate time with our loved ones can be shared. This narrative has underpinned the motivation for individuals wanting to live out their last days at home. With swift medical advancement and growing perceptions that hospitals provide higher quality end-of-life care, deaths have however shifted from the home to hospitals. This dissertation aimed to explore the complex contextual factors involved in eliciting end-of-life care preferences and to identify facilitators and barriers of home deaths in Singapore with a specific focus on the impact of Advance Care Planning (ACP). A multiple methods approach using qualitative and quantitative research methodologies were used: (i) retrospective cohort study to identify factors associated with home deaths, and to profile end-of-life care preferences and determine concordance of care with these preferences; (ii) semi-structured focus group discussions with 63 healthcare professionals to understand the implementation of ACP and the elicitation of end-of-life care preferences; (iii) quasi-experimental study to ascertain the impact of ACP on the place of death. The dissertation results challenged the popular viewpoint that home is the most preferred place of death. Among individuals diagnosed with advanced illnesses, only 40% had a documentation of “home” as the preferred place of death in their ACP documents. Instead of being an independent decision, preferences for place of death were formed through negotiation between and co-constructed by the patient, family, and healthcare professionals. Families also often believed that better care can be provided for, in the hospital. Besides non-modifiable person- and family-level factors, our results suggested that receiving home palliative care and having an ACP documentation, were associated with a higher chance of dying at home. For non-cancer patients - who had limited access to home palliative care – ACP was associated with increased home deaths, and a significant reduction in unnecessary life-sustaining treatments and health resource use in their last month of life. With the expansion of the national ACP programme already underway, our results underscored the importance for policy makers to focus on changing societal mindsets regarding conversations about death and dying and shifting healthcare practices towards one that supports pro-active patient participation and shared decision-making. Further, given that most deaths still occurred in hospitals, hospitals must continue to be viable sites where high-quality end-of-life care is available.Doctor of Philosoph