Systems for electronic documentation and sharing of advance care planning preferences: a scoping review

Abstract

Digital approaches to support advance care planning (ACP) documentation and sharing are increasingly being used, with a lack of research to characterise their design, content, and use. This study aimed to characterise how digital approaches are being used to support ACP documentation and sharing internationally. A scoping review was performed in accordance with the JBI (formerly Joanna Briggs Institute) guidelines and the PRISMA 2020 checklist, prospectively registered on Open Science Framework ( https://osf.io/xnrg3 ). MEDLINE, EMBASE, PsycINFO, ACM Digital, IEEE Xplore and CINAHL were searched in February 2023. Only publications in English, published from 2008 onwards were considered. Eligibility criteria included a focus on ACP and electronic systems. Out of 2,393 records, 34 reports were included, predominantly from the USA (76.5%). ACP documentation is typically stored in electronic health records (EHRs) (67.6%), with a third (32.4%) enabling limited patient access. Non-standard approaches ( n = 15;44.1%) were the commonest study design of included reports, with outcome measures focusing on the influence of systems on the documentation (i.e. creation, quantity, quality, frequency or timing) of ACP information ( n = 23;67.6%). Digital approaches to support ACP are being implemented and researched internationally with an evidence base dominated by non-standard study designs. Future research is needed to extend outcome measurement to consider aspects of care quality and explore whether the content of existing systems aligns with aspects of care that are valued by patients.

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

“…The impact of digital advance care planning important to participants in our study includes documentation of quality-of-life aspects such as personal autonomy and emotional, social and spiritual factors. Commonly digital advance care planning systems are evaluated using outcomes including the location where a person is cared for and dies 4 ; metrics that do not indicate care quality of the experience of the patient. 42 This mismatch is echoed in the UK where the intended impacts of digital advance care planning approaches are aligned with national policy goals (e.g.…”

“…Overview of the data analysis approach using framework analysis. 4,13,15,24 Participants expressed concerns that incorrect information could be shared widely using digital systems. They also considered whether their documented information was detailed enough to allow a future health professional to act upon their preferences in the way they had specified:…”

“…3 Numerous digital approaches are being explored internationally to support the elicitation, documentation and sharing of preferences determined through advance care planning. 4 Digital approaches may capture varying elements of advance care planning information (i.e. advance statements of wishes and preferences, advance decisions to refuse treatment (e.g.…”