Article Text
Abstract
Background Globally the phrase ‘death literacy’ is becoming increasingly recognised, defined as ‘knowledge about and understanding of the death system’ (Primary Health Tasmania. Learning about death literacy, with Dr Kerrie Noonan. [internet]). Greater awareness about death and dying has been shown to reduce anxieties and enable a better experience around death. However, we struggle to engage with communities in a meaningful way to be a more death literate society (Sallnow, Smith, Ahmedzai, et al. Lancet. 2022; 399(10327):837–884). The Griefcase is an initiative inspired by the ‘death-positive movement’ (Koksvik & Richards. Mortality. 2023; 28(3): 349–366). It aims to facilitate thought-provoking conversations about death and dying. This includes both practical and emotional aspects at end-of life, encouraging decisions to be made sooner rather than later (Marie Curie et al. Creating a death literate society. 2022). We created a ‘toolkit’ which is contained within the ‘Griefcase’, a physical case. Bespoke Griefcases include kinaesthetic activities and cue cards to help encourage conversations and learning about end-of-life matters. These sessions are held in physical spaces called ‘Departure Lounges’, using the analogy of travel, connection and change to initiate engagement.
Aim To create, evaluate and refine an accessible bespoke toolkit for groups to use, encouraging death literacy learning including health (Mitchell, Nyatanga, Lillyman, et al. Int J Palliat Nurs. 2021; 27(7):352–360) and education settings.
Methods Phase 1 (Nov 2022 – Feb 2023). Stakeholder consultation, literature review. Phase 2 (Feb 2022). Pilot initial session using hospice workforce, collation of feedback. Phase 3 (April 2023 – May 2023). Second pilot involving staff, patients and their loved ones, collation of feedback. Phase 4 (July 2023 – ongoing). Six-month pilot with the community.
Results 25 people attending. Mode of delivery – face-to-face at hospice. Patients =3, family member = 2, staff = 10, volunteers = 10. Evaluation forms (12 completed) with initial findings of (i) Increased confidence in conversations around death and dying (ii) Increased confidence in discussing practical issues sooner, (iii) Awareness of choices.
Conclusions Creating opportunities to engage communities’ interest in death literacy (Noonan, Horsfall, Leonard, et al. Prog Palliat Care. 2016; 24(1): 31–35) will build capacity for both future caring and prevention of inappropriate treatment by building confidence in communities to make informed choices.