Background Storytelling has been established as an effective tool for supporting people with end-of-life care decision making (Youell, Ward. ehospice [UK ed]. 2016; Jan 4; Watson, Voss, Bloomer. Res Pract Persons with Severe Disabilities. 2019; 44(4):267–79). Through a process of personal evaluation and reflection, patients and their loved ones can come to terms with life-changing diagnosis and death (Youell, Ward, 2016; Watson et al, 2019). We observed that parts of our workforce had difficulties initiating and having important advance care planning (ACP) discussions with patients and their loved ones. We developed a Making MEmories and Lasting Legacies (MMELL) programme as a less clinical, neutral and personalised tool for promoting ACP discussions. With art-based therapies and personal narratives at its core, MMELL seeks to help the hospice workforce, patients, and their families to have meaningful ACP discussions for a better end-of-life care experience.
Aims To refine the MMELL programme and evaluate its impact on meaningful ACP discussions.
Methods Phase 1. Literature review, stakeholder consultation and hospice-wide roll out of the MMELL programme, development of feedback forms. Phase 2. Data collection and analysis (i) patient and family uptake of MMELL programme, (ii) clinical notes for ACP discussions before and after MMELL programme introduction, (iii) service user feedback forms. Phase 3. Programme refinement, expansion of the offer to the wider hospice community, stakeholder consultation, dissemination of preliminary findings.
Preliminary results Since May 2022, we have created 15 fingerprint jewellery items, nine hand casts, conducted seven family workshops, and recorded 10 life stories. Feedback forms show that patients enjoy the process of using art-based, creative methods to express what is important to them in ACP discussions. Families have also expressed that it has helped them to come to terms with their loved one’s impending mortality.
Conclusions MMELL has improved uptake of ACP discussions for people accessing the hospice services. This service has emerged as a personalised offer during initial clinical assessments. Our MMELL programme shows that art-based methods of expressing what matters most are accessible, inclusive and personal (Watson et al, 2019; Jerwood, Allen. BMJ Support Palliat Care. 2022;12:A1-A2).
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