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Tools to Promote Shared Decision Making in Serious Illness: A Systematic Review
Open accessAbstract
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.
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“Prior research has suggested benefit (505) or harm (506) for “early” versus “delayed” initiation of RRT.”
From Surviving Sepsis Campaign: International Guidelines for Management of Sepsis and Septic Shock 2021. (2021) · cites this paper as [505]
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“A family care conference with nursing staff at the time of discharge from the ICU resulted in lower anxiety scores for family members compared to a control group although it is not clear that families participated in SDM (592).”
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“This study is the first multicenter randomized trial to our knowledge to test a decision aid in an acute care setting (49).”
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Metadata
- Authors
- Austin, C. A., Mohottige, D., Sudore, R. L., Smith, A. K., & Hanson, L. C.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- Duke University (US)
- San Francisco VA Medical Center (US)
- Venue
- JAMA Internal Medicine
- Publisher
- American Medical Association (AMA)
- Published
- 2015-07-01
- Volume
- 175
- Issue
- 7
- Pages
- 1213
- ISSN
- 2168-6106 (ISSN-L)
- PMC
- PMC4794743
- OpenAlex
- W2149566104
- Semantic Scholar
- c9934e781aa4171f4cff3787350c56f4aa9c9d3b
- Cited by
- 285
- References
- 57
- Citations by year
- 2026: 11 · 2025: 29 · 2024: 20 · 2023: 29 · 2022: 34 · 2021: 31 · 2020: 22 · 2019: 31 · 2018: 27 · 2017: 29 · 2016: 17 · 2015: 4
- FWCI
- 27.46
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- JAMA Internal Medicine (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Funders
- U.S. Department of Veterans Affairs
- Patient-Centered Outcomes Research Institute
- National Institute on Aging (K23AG040772, R01AG045043, R01AG037483)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- shared decision-making, serious illness, decision aids, advance care planning, palliative care, patient knowledge, caregiver involvement
- MeSH terms
- Catastrophic Illness, Decision Making, Humans, Randomized Controlled Trials as Topic, Critical Illness
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