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JAMA Intern Med. 2017 Jan 1;177(1):24-31. doi: 10.1001/jamainternmed.2016.7031.

Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial.

Author information

Cecil G. Sheps Center for Health Services Research and School of Medicine, Division of Geriatric Medicine, University of North Carolina at Chapel Hill, Chapel Hill.
Cecil G. Sheps Center for Health Services Research and the School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill.
Center for Nursing Excellence in Palliative Care, Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, Georgia.
Department of Biostatistics, School of Public Health, University of North Carolina at Chapel Hill, Chapel Hill.
Partnerships in Aging Program, University of North Carolina at Chapel Hill, Chapel Hill.
Hebrew Senior Life Institute for Aging Research and Department of Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts.



In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired.


To test a goals of care (GOC) decision aid intervention to improve quality of communication and palliative care for nursing home residents with advanced dementia.

Design, Setting, and Participants:

A single-blind cluster randomized clinical trial, including 302 residents with advanced dementia and their family decision makers in 22 nursing homes.


A GOC video decision aid plus a structured discussion with nursing home health care providers; attention control with an informational video and usual care planning.

Main Outcomes and Measures:

Primary outcomes at 3 months were quality of communication (QOC, questionnaire scored 0-10 with higher ratings indicating better quality), family report of concordance with clinicians on the primary goal of care (endorsing same goal as the "best goal to guide care and medical treatment," and clinicians' "top priority for care and medical treatment"), and treatment consistent with preferences (Advance Care Planning Problem score). Secondary outcomes at 9 months were family ratings of symptom management and care, palliative care domains in care plans, Medical Orders for Scope of Treatment (MOST) completion, and hospital transfers. Resident-family dyads were the primary unit of analysis, and all analyses used intention-to-treat assignment.


Residents' mean age was 86.5 years, 39 (12.9%) were African American, and 246 (81.5%) were women. With the GOC intervention, family decision makers reported better quality of communication (QOC, 6.0 vs 5.6; P = .05) and better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P = .02). Goal concordance did not differ at 3 months, but family decision makers with the intervention reported greater concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P = .001). Family ratings of treatment consistent with preferences, symptom management, and quality of care did not differ. Residents in the intervention group had more palliative care content in treatment plans (5.6 vs 4.7, P = .02), MOST order sets (35% vs 16%, P = .05), and half as many hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88). Survival at 9 months was unaffected (adjusted hazard ratio [aHR], 0.76; 95% CI, 0.54-1.08; P = .13).

Conclusions and Relevance:

The GOC decision aid intervention is effective to improve end-of-life communication for nursing home residents with advanced dementia and enhance palliative care plans while reducing hospital transfers.

Trial Registration: Identifier: NCT01565642.

[Indexed for MEDLINE]
Free PMC Article

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