Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

BACKGROUND: Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. METHODS: An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. RESULTS: 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. CONCLUSIONS: People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-021-00806-2.