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

Abstract

Objectives Advance care planning is a key preparatory step in ensuring high-quality palliative and end of life care, and should be considered as a process, beginning with community-level conversations among lay persons. There is, however, indication that death talk among community-dwelling adults is not occurring, and there is a dearth of research examining why this is the case. This study aims to provide the first examination of barriers and facilitators to talking about death and dying among the general population in a UK region (Northern Ireland), and to provide a novel application of health behaviour change theory towards developing a theoretical understanding of the sources of this behaviour. Methods The study involved qualitative analysis of responses (n = 381 participants) to two open-ended questions within a cross-sectional online survey, with recruitment via social media of adults currently living in Northern Ireland. Reflexive thematic analysis was conducted on open text responses per question, with the barriers and facilitators mapped on to health behaviour change models (the Behaviour Change Wheel COM-B and the Theoretical Domains Framework). Results The findings evidence a myriad of barriers and facilitators to engaging in death talk, with themes aligning to areas such as lack of acceptance of death in social contexts and fear of upsetting self or others, and a need to improve interpersonal communication skills for facilitating conversations and improve knowledge of the existing services around death and dying. A theoretical understanding of the drivers of death talk is presented with findings mapped across most components of the COM-B Behaviour Change Model and the Theoretical Domains Framework. Conclusions This study contributes to a small but emergent research area examining barriers and facilitators to talking about death and dying. Findings from this study can be used to inform new public health programmes towards empowering adults to have these conversations with others in their community towards upstreaming advance care planning.

Psychometric validation of the death literacy index and benchmarking of death literacy level in a representative uk population sample

“…It must however be recognised that all population level benchmarks are near the mid-point of each subscale, and there is considerable opportunity to strengthen capacity in all areas of death literacy. For example, a recent survey in Northern Ireland [ 45 ] reported significant barriers to individuals talking about death and dying, such as fear of upsetting self or others and apprehension at navigating sensitive conversations. Key areas to strengthen capacity at a population level are around factual knowledge and accessing help.…”

“…It is an open-question as to whether the COVID-19 pandemic has contributed positively to communities’ capacity to provide EoLC, and indeed the extent to which death literacy can be sustained over time within communities. There is a desire from the general public to learn from those with professional and lived experience of EoLC [ 45 ], with the challenge being how to translate this into community-based interventions without increasing the recognised burden on informal carers.…”

“…However, young adults have previously described experiencing exclusion from conversations relating to care decisions, serious illness and death, leading to a feeling of being ill-prepared [ 48 ]. This emphasises the importance of a life-course approach to death literacy, with respondents in our previous research suggesting that death literacy should be provided equal status to sexual health education in school settings [ 45 ]. The relationship between age and death literacy is not strictly linear in the current study, 28–37 year olds reporting a lower DLI mean score than 18–27 year olds, and there is a significant relationship between having children and higher levels of death literacy.…”

Matters of care and the good death – rhetoric or reality?

“…A ‘good death’ is often characterised as one that is foreshadowed, associated with control and choice 24 – a strong feature of the ‘good death’ narrative. Advance care plans, for example, are seen as tools for achieving ‘good deaths’, supporting exploration, and identification of choices ahead of time 25 . Yet frail older people place greater importance on family relationships and living as well as possible now (effectively ‘good living’) rather than being primarily concerned with what happens later 26 .…”

Death cafés as a strategy to foster compassionate communities: Contributions for death and grief literacy

“…We argue that the Death Café approach can be a useful strategy to improve both death and grief literacy levels and may help promote the burgeoning concept of compassionate communities as part of palliative care (Graham-Wisener et al, 2022 ).…”