Background: It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and carers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end of life. Aim: To gain an in-depth understanding of how terminally ill patients and their family caregivers make decisions about preferred place of care and place of death. Design: Semi-structured interviews with patients and carers, which were analysed thematically using qualitative description. Setting/ participants: A total of 17 participants (eight patients and nine carers) recruited from an acute palliative care hospital ward, a sub-acute hospice unit, and a palliative homecare organisation in Melbourne, Australia. Results: The process of forming preferences for place of care and place of death was shaped by uncertainty relating to the illness, the carer and the services. Participants dealt with this uncertainty on a level of thoughts, emotions, and actions. At the end of this process, participants expressed their choices as conditional, personal, relational, contextual and flexible preferences. Conclusions: End-of-life decision-making rarely ends with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.

As healthcare systems worldwide are confronted with increasing numbers of ageing and terminally ill patients, the topic of where people want to spend their last days has received considerable attention. However, the strategies that researchers and clinicians use to capture these end-of-life views vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. We will argue that how researchers and clinicians choose to answer these questions directly influences their findings. Based on these considerations, we will highlight ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments. Only when we are able to accurately identify where people want to spend their last days, can we begin to meet the needs of patients as they approach the final stage of their lives.