• Palliative medicine · Jul 2024

    Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.

    • Jacqueline Birtwistle, Matthew J Allsop, Andy Bradshaw, Pablo Millares Martin, Katherine E Sleeman, Maureen Twiddy, and Catherine J Evans.
    • Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
    • Palliat Med. 2024 Jul 1; 38 (7): 711724711-724.

    BackgroundDigital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care.AimTo explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development.DesignA qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews.Setting/ParticipantsPurposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents.ResultsFour generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'.ConclusionsLived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

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