An estimated 5 million US adults have dementia, and that number is expected to increase.1 Loss of communication, functional dependency, and numerous medical complications are common in the advanced stages of the disease, and family members must face difficult decisions regarding patients’ care.
In a single-blind, cluster randomized trial reported in JAMA Internal Medicine, researchers assessed a new decision-aid intervention aimed at improving communication and care for such patients in nursing home settings, where the majority of individuals with dementia die.2
“In the last stages of dementia, typically lasting 1 to 2 years, families and patients experience a distressing series of medical illnesses and hospitalizations with little guidance on goals of care and medical treatment choices,” according to study co-author Laura C. Hanson, MD, MPH, a professor in the Division of Geriatric Medicine at the University of North Carolina at Chapel Hill. For example, in a previous study involving decision makers for nursing home residents with advanced dementia, only 38% indicated that they had been involved in at least 1 treatment decision.3
Dyads of patients at 22 nursing homes and their family decision makers (n=302 dyads) were assigned to either a goals of care (GOC) intervention or a control group. The GOC is a 2-part intervention for decision makers that consists of a video decision aid and structured discussion with the patient’s care team.
“The Goals of Care video decision aid was designed to help families understand treatment choices in advanced dementia and to help them communicate with nursing home clinicians to improve care,” Dr Hanson told Psychiatry Advisor. Participants in the control condition watched an informational video on dementia and participated in usual care plan meetings with staff members. Participants in the GOC group viewed the decision-aid video, which provided information on dementia and how to prioritize goals and treatments pertaining to prolonging life, supporting function, and improving comfort. Staff members underwent training to prepare them to facilitate the structured GOC of care discussion.
The primary and secondary study outcomes were compared between groups at 3-month, 6-month, and 9-month time points. Primary outcomes consisted of 3 family-rated measures of quality of communication and decision-making assessed at the 3-month mark, and the secondary outcomes evaluated the quality of palliative care at 6 months and 9 months (or death), as assessed by validated instruments.
The following results were found for the GOC group vs the control group:
- Better quality of communication (QOC, 6.0 vs 5.6; P =.05) as rated on a 10-point scale
- Better end-of-life communication (QOC end-of-life subscale, 3.7 vs 3.0; P =.02).
- Higher goal concordance by 9 months or death (133 [88.4%] vs 108 [71.2%], P =.001)
- More palliative care content in treatment plans (5.6 vs 4.7, P =.02) and Medical Orders for Scope of Treatment (MOST) order sets (35% vs 16%, P =.05)
- Half the number of hospital transfers (0.078 vs 0.163 per 90 person-days; RR, 0.47; 95% CI, 0.26-0.88)
“This is the first clinical trial aimed at improving goals of care decisions for persons with advanced dementia,” Dr Hanson said. “Given the lack of any near-term therapies to change the course of neurodegenerative dementias, we have a research imperative to find better approaches for supportive and palliative care for these patients. We hope that the Goals of Care intervention will be followed by other studies of palliative care for advanced dementia.”
1. 2016 Alzheimer’s Disease Facts and Figures. Alzheimer’s Association. http://www.alz.org/facts. Accessed December 12, 2016.
2. Hanson LC, Zimmerman S, Song MK, et al. Effect of the Goals of Care intervention for advanced dementia: a randomized clinical trial [published online November 28, 2016]. JAMA Intern Med. doi: 10.1001/jamainternmed.2016.7031
3. Givens JL, Kiely DK, Carey K, Mitchell SL. Healthcare proxies of nursing home residents with advanced dementia: decisions they confront and their satisfaction with decision-making. J Am Geriatr Soc. 2009;57(7):1149-1155.