Tools to Promote Shared Decision Making in Serious Illness: A Systematic Review

Abstract

Importance: Serious illness impairs function and threatens survival. Patients facing serious illness value shared decision making, yet few decision aids address the needs of this population.

Objective: To perform a systematic review of evidence about decision aids and other exportable tools that promote shared decision making in serious illness, thereby (1) identifying tools relevant to the treatment decisions of seriously ill patients and their caregivers, (2) evaluating the quality of evidence for these tools, and (3) summarizing their effect on outcomes and accessibility for clinicians.

Evidence review: We searched PubMed, CINAHL, and PsychInfo from January 1, 1995, through October 31, 2014, and identified additional studies from reference lists and other systematic reviews. Clinical trials with random or nonrandom controls were included if they tested print, video, or web-based tools for advance care planning (ACP) or decision aids for serious illness. We extracted data on the study population, design, results, and risk for bias using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) criteria. Each tool was evaluated for its effect on patient outcomes and accessibility.

Findings: Seventeen randomized clinical trials tested decision tools in serious illness. Nearly all the trials were of moderate or high quality and showed that decision tools improve patient knowledge and awareness of treatment choices. The available tools address ACP, palliative care and goals of care communication, feeding options in dementia, lung transplant in cystic fibrosis, and truth telling in terminal cancer. Five randomized clinical trials provided further evidence that decision tools improve ACP documentation, clinical decisions, and treatment received.

Conclusions and relevance: Clinicians can access and use evidence-based tools to engage seriously ill patients in shared decision making. This field of research is in an early stage; future research is needed to develop novel decision aids for other serious diagnoses and key decisions. Health care delivery organizations should prioritize the use of currently available tools that are evidence based and effective.

Conflict of interest statement

Conflict of Interest Disclosures: Dr Hanson has received funding from the National Institute of Nursing Research, the National Institute on Aging, the Agency for Healthcare Research and Quality, and the National Heart, Lung, and Blood Institute; serves as Vice Chair for Research for the American Geriatrics Society; and provides consulting for Research Triangle Institute on hospice and palliative care quality measurement science. Dr Sudore has received support from the US Department of Veterans Affairs, grant R01AG045043-01 from the National Institute on Aging, and the Patient Centered Outcomes Research Institute. Dr Smith has received support from the American Federation for Aging Research and grant K23 AG040772 from the National Institute on Aging. None of the listed disclosures provide direct funding relevant to this study. No other disclosures were reported.

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Literature Search and Selection