JMIR Publications

ABSTRACT

Background:

Making a care-related decision is a complex cognitive process. Patient decision aids could provide information on potential options about risks and benefits, incorporate individual values and preferences, and help the people with dementia and/or family carer make the decision about palliative and end-of-life (EOL) care.

Objective:

This systematic review aimed to critically evaluate and synthesize evidence on the feasibility and effectiveness of digital decision aids to support decision making in palliative and EOL dementia care for patients, family carers, and/or clinicians.

Methods:

A systematic literature search in four health-related databases (PubMed, EMBASE, CINAHL, and Web of Science) was performed with no restriction on the search period. The reference lists of included studies and relevant articles that cited included studies were hand-searched to identify additional eligible studies. Qualitative synthesis and meta-analyses were performed to comprehensively summarize the technologies and outcomes of using the decision aids.

Results:

The literature review in datasets yielded 1274 records. With an additional 5 records from citation searching and reference reviewing, a total of 20 articles were included with 10 studies using data from RCTs and 10 pre-post pilot studies. Technologies of visual aids, videos, interactive web pages, and telehealth were reported in the included studies to support decision making for EOL dementia care. Most decision aids focused on the decision about the primary goal of care (life prolonging care, limit care, and comfort care), except for one visual aid focusing on the decisions about feeding tube placement and drug treatment for dementia. Most decision aids engage both patients and their family carers. Pilot studies examining the feasibility showed that majority of participants found these decision aids relevant to their needs, ease to use, and completed the intervention sessions. Meta-analyses of four RCTs showed that video decision aids were effective in increasing the proportion of participants opting for comfort care (Odds Ratio of 3.81, 95% CI 1.92 to 7.56), but inconclusive for the proportion of documenting Do-Not-Hospital orders (OR of 1.60, 95% CI 0.70 to 3.67) compared to the control group.

Conclusions:

Internet-based decision aids offer a feasible and acceptable approach to support the shared decision making between patients, families, and clinicians. Included studies reported various outcome measures in preferred goal of care, quality of palliative care, decisional making performance, and healthcare utilization. More large-scale RCTs are needed, and consistent outcome measures could be considered to evaluate the effect of EOL decision aids. Clinical Trial: NA