Advance Care Planning Shared Decision-Making Tools for Non-Cancer Chronic Serious Illness: A Mixed Method Systematic Review

Context: Shared decision-making tools can facilitate advance care planning and goals of care conversations in non-cancer serious illness. More information on integrating these tools in ambulatory care could better support clinicians and patients/caregivers in these conversations. Objectives: We evaluated effectiveness and implementation of integrating palliative care shared decision-making tools into ambulatory care for U.S. adults with serious, life-threatening illness and their caregivers. Data sources: We searched PubMed, CINAHL, and the Cochrane Central Register of Controlled Trials (2000 - May 2020) for quantitative controlled, qualitative, and mixed-methods studies. Review methods: Two reviewers screened articles, abstracted data, and independently assessed risk of bias or study quality. For quantitative trials, we graded strength of evidence for key outcomes: patient/caregiver satisfaction, depression or anxiety, concordance between patient preferences for care and care received, and healthcare utilization, including advance directive documentation. Results: We included 6 quantitative effectiveness randomized, controlled trials and 5 qualitative implementation studies across primary care and specialty populations. Shared decision-making tools all addressed goals-of-care communication or advance care planning. Palliative care shared decision-making tools may be effective for improving patient satisfaction with communication and advance directive documentation. We were unable to draw conclusions about concordance between preferences and care received. Patients and caregivers preferred advance care planning discussions grounded in patient and caregiver experiences with individualized timing. Conclusions: For non-cancer serious illness, advance care planning shared decision-making tools may improve several outcomes. Future trials should evaluate concordance with care received and other health care utilization. Key Message: This mixed-methods review concludes that when integrating palliative care into ambulatory care for serious illness and conditions other than cancer, advance care planning shared decision-making tools may improve patient satisfaction and advance directive documentation.