Shared decision making near the end of life: review of gaps and practical challenges of developing an electronic decision aid prototype

Description

Background
The preparedness of older patients and their families for poor prognostic news and care planning for near end of life (EOL) depends on personal, clinical and social factors. We investigated decision aids (DAs) for EOL management available in the literature and aimed to address the gaps found in the review to optimize advance care planning in routine practice.
Methods
Systematic review of the English language literature 1995-2015 on 7 databases (PubMed, Medline, EMBASE, EBM Reviews, CINAHL and PsycInfo). Subsequent development of a computerized DA prototype for use in hospitals and nursing homes, filling the research gaps to facilitate value-based, informed decision-making. This was executed through an externally-funded researcher-clinician-engineer collaborative, with ongoing involvement of target users and intermittent consultation with consumers.
Results
Seventeen DAs for older patients surrogates and/or clinicians met the eligibility criteria for review, with over half designed for self-administration. Most covered understanding of treatment harms/benefits, and largely uninformed treatment preferences. Gaps in quantitative prognostic estimates and patient value statements were generally lacking. Part-funding for a clinician-administered DA prototype development was obtained for three selected terminal conditions. Further literature searches of numeric prognostic outcomes for various management options in terminal patients was conducted by volunteer Public Health Master’s students prior to DA development. The operationalization of the specifications for an ‘ideal DA’ proposed by clinicians and researchers to engineers met with the realities of what technology and insufficient funding could achieve in a limited time. Consumer and clinician feedback during early user testing was valuable in highlighting the exhaustive nature of the new patient values module which reduced its usability in clinical practice, particularly in emergency departments.
Conclusions
Improving the quality of EOL shared decision-making using DAs requires consideration of content relevance and tact. This needs to be balanced with brevity to enable full coverage of the main aspects at first encounter. Optimal shared decision-making requires several opportunities to consider the suite of choices that need to be made over time, and flexibility for patient/families change of treatment choice. An extended development phase is underway and will attempt to correct the identified drawbacks and encourage uptake by clinicians.

Additional information

co-authors: Ebony T. Lewis, Hatem Alkhouri, Nigel Lovell, Gustavo Benfatti-Olivato G, Joshua Head, Eyza Koreshe, Isabella Marechal-Ross, Stephen Asha S, Robin M. Turner

Period	9 Jul 2019
Held at	Université Laval, Canada
Degree of Recognition	International