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 or harm for early versus delayed initiation of renal replacement therapy.
“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]
The Discussion (Implications; page unavailable) mentions end-stage renal disease only as an area needing research on decision aids. Searches for early versus delayed renal replacement therapy and dialysis initiation found no passage addressing benefit or harm from the timing of treatment. (LLM, conf=0.76)
Experimental — accuracy not yet measuredA 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.
“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).”
From Surviving Sepsis Campaign: International Guidelines for Management of Sepsis and Septic Shock 2021. (2021) · cites this paper as [592]
The Results sections on decision tools for current treatment and advance care planning report outcomes such as decisional conflict, caregiver depression, and treatment preferences, but do not describe an ICU-discharge family conference or family anxiety scores. Searches for ICU discharge, nursing-staff conferences, and anxiety found no passage addressing the claimed comparison with a control group. (LLM, conf=0.76)
Experimental — accuracy not yet measuredThis study is the first multicenter randomized trial to test a decision aid in an acute care setting.
“This study is the first multicenter randomized trial to our knowledge to test a decision aid in an acute care setting (49).”
From Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation (2019) · cites this paper as [49]
The Methods (Study Selection; page unavailable) identify this source as a systematic review, and the Results (RCTs of Decision Tools for Current Treatment; page unavailable) describe a decision-tool study involving inpatients. Neither passage addresses whether the citing study was multicenter or the first randomized trial of a decision aid in an acute-care setting. Searches for those terms found no passage establishing that claim. (LLM, conf=0.74)
Experimental — accuracy not yet measuredStudies of tools to promote shared decision making in patients with other serious illnesses show improved patient knowledge and awareness of treatment options.
“Studies of tools employed to promote SDM in patients with other serious illnesses show improved patient knowledge and awareness of treatment options [595].”
From Surviving sepsis campaign: international guidelines for management of sepsis and septic shock 2021 (2021) · cites this paper as [595]
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- 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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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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