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

Abstract

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.

‘The beauty and the less beautiful’: exploring the meanings of dying at ‘home’ among community and practitioner representatives and advocates across Canada

“…Moreover, this talk signaled participants’ relational identities and desires not only for a particular kind of (holistic, non-medical) care but for particular caring relations, before and after a death, supporting a broad conceptualization of ‘care’. Such findings are further supported by a 2018 Welsh survey, 44 which found that being at home at the end of life was less important to respondents than being surrounded by loved ones.…”

“…Finally, our findings suggest a need to build public awareness about and access to hospices and in-patient palliative care, with journalists, clinicians, and not-for-profit organizations continuing to communicate these options. 44…”

Understanding public attitudes to death talk and advance care planning in Northern Ireland using health behaviour change theory: a qualitative study

“…Previous research identifies several barriers including lack of knowledge of the death system [ 51 ], fear/distress associated with thinking about death and dying [ 52 ] and difficulty engaging others in death talk or fear of upsetting others [ 53 ]. An aligned Welsh study [ 47 ] conducted at a similar period of time to the current study identified several levels of barriers, including social perception and practice (e.g. death as a societal ‘taboo’), lack of opportunities (e.g.…”

“…Several novel barriers to talking about death and dying were also identified, including a focus on interpersonal communication skills and cultural beliefs. The identification of facilitators to provide a more multi-dimensional understanding of the drivers of this behaviour was also a novel contribution of this study, with a previous lack of prior attention in the research literature [ 47 ].…”

“…The survey was originally developed by the co-authors at Cardiff University [ 47 ] in collaboration with the One Wales Palliative Care Program of the National End of Life Care Board, informed by findings from the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership [ 38 , 39 ]. The aim of the survey was to understand attitudes towards death and dying, with included domains on fears about death and dying, preferences and priorities around EoLC, knowledge around terminologies commonly used in EoLC and understanding about ACP, EoLC plans and communication around death and dying.…”