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

Hanson, Laura C.; Zimmerman, Sheryl; Song, Mi-Kyung; Lin, Feng-Chang; Rosemond, Cherie; Carey, Timothy S.; Mitchell, Susan L.

doi:10.1001/jamainternmed.2016.7031

Cited by 275Palliative Care and End-of-Life IssuesGeriatric Care and Nursing HomesDementia and Cognitive Impairment Research

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

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Hanson, Laura C., Zimmerman, Sheryl, Song, Mi-Kyung, Lin, Feng-Chang, Rosemond, Cherie, Carey, Timothy S., Mitchell, Susan L.·2017·JAMA Internal Medicine

DOI 10.1001/jamainternmed.2016.7031PMC PMC5234328

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Abstract

Importance: In advanced dementia, goals of care decisions are challenging and medical care is often more intensive than desired. Objective: 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. Interventions: 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. Results: 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: clinicaltrials.gov Identifier: NCT01565642.

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Communication supported by strategies such as video decision aids may be associated with improved family satisfaction, according to recent studies.
“Furthermore, according to recent studies, communication supported by other strategies such as video decision aids may be associated with improved family satisfaction. 67,75,78”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [67]
The Methods (Intervention and Control; page not provided) describe a video decision aid paired with a structured discussion, and the Results (Communication and Decision-Making Outcomes; page not provided) report improved family-rated communication. But the Results (Quality of Palliative Care Outcomes; page not provided) explicitly state that family satisfaction with care did not differ between intervention and control groups. (LLM, conf=0.88)
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Decision aids have decreased hospital transfer rates in nursing home residents with dementia.
“decreased hospital transfer rates in nursing home residents with dementia (31, 32)”
From Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation (2019) · cites this paper as [32]
One well-characterised post-mortem cohort of the oldest old (n=1079; mean age 90 years) dying with dementia found that neuropathological features of Alzheimer's disease account for about half of the cognitive decline seen, as people diagnosed with Alzheimer's disease had mixed causes of dementia.
“One well characterised post-mortem cohort of the oldest old (n=1079; mean age 90 years) dying with dementia, found that neuropathological features of Alzheimer's disease account for about half of the cognitive decline seen as people diagnosed with Alzheimer's disease had mixed causes of dementia.299”
From Dementia prevention, intervention, and care: 2020 report of the Lancet Commission (2020) · cites this paper as [299]
Split into 2 atoms — 0 confirmed, 0 partially supported, 0 disputed, 0 misattributed, 2 unverifiable. Expand the claim to see per-atom verdicts.
Experimental — accuracy not yet measured
Some recent studies found that family support interventions did not reduce psychological symptoms in family members.
“However, some recent studies found that family support interventions did not reduce psychological symptoms in family members. 66,67,75,79”
From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [67]
The Methods > Outcomes section lists measures of family decision makers’ communication and decision-making, but not their psychological symptoms. The unchanged family ratings of symptom management in Results > Quality of Palliative Care Outcomes concern residents’ care, not symptoms experienced by family members. Searches for family anxiety, depression, distress, and burden found no relevant result in our copy. (LLM, conf=0.78)
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Authors: Hanson, L. C., Zimmerman, S., Song, M.-K., Lin, F.-C., Rosemond, C., Carey, T. S., & Mitchell, S. L.
Affiliations: University of North Carolina at Chapel Hill (US)
Emory University (US)
Beth Israel Deaconess Medical Center (US)
Corresponding author: Hanson, Laura C.
ORCID: Hanson, Laura C.
Song, Mi-Kyung
Lin, Feng-Chang
Carey, Timothy S.
Venue: JAMA Internal Medicine
Publisher: American Medical Association (AMA)
Published: 2017-01-01
Volume: 177
Issue: 1
Pages: 24
ISSN: 2168-6106 (ISSN-L)
DOI: 10.1001/jamainternmed.2016.7031
PMC: PMC5234328
OpenAlex: W2558265756
Cited by: 275
References: 33
Citations by year: 2026: 11 · 2025: 24 · 2024: 25 · 2023: 31 · 2022: 28 · 2021: 37 · 2020: 54 · 2019: 25 · 2018: 27 · 2017: 11 · 2016: 1 · 2015: 1
FWCI: 21.15
Type: journal article
Language: en
Open access: green
www.ncbi.nlm.nih.gov
Locations: JAMA Internal Medicine (publishedVersion)
PubMed (publishedVersion)
PubMed Central (acceptedVersion)
Funders: National Institute on Aging (R01AG037483, K24AG033640)
Topics: Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
Keywords: goals of care, advanced dementia, decision aids, nursing home residents, end-of-life communication, palliative care, advance care planning, hospital transfer, communication quality, symptom management, treatment preferences, video-based intervention, African American older adults
MeSH terms: Aged, 80 and over, Communication, Decision Making, Decision Support Techniques, Dementia, Female, Goals, Hospitalization, Humans, Male, Nursing Homes, Palliative Care, Patient Care Planning, Surveys and Questionnaires, Video Recording, Single-Blind Method, Quality Improvement

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

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