Clinical research studies: Decision aids as an intervention for end-of-life discussion for dementia patients

This year, several papers were published based on the clinical research work of a group of investigators primarily located at the University of North Carolina and University of Central Florida. Two papers published the results of their work and a third paper was an invited commentary on the first paper.

The main study, “Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial” focused on the effectiveness of a decision aid (an instructional video and following structured discussion) on facilitating effective communication about end of life with family caregivers of dementia patients, and increasing the delivery of palliative care to the patients. The family caregivers in the study were the decision makers for nursing home residents with advanced dementia, and the caregiver and patient were enrolled together as a “resident-family dyad” for study purposes. Over 300 dyads participated in this study across 22 diverse nursing homes, and the study enrollment period lasted over two years, from April 2012 through September 2014. The second study discusses the nursing staff perceptions during the clinical research trial, in terms of their confidence in the use of the instructional video as an aid in discussing goals of care with families.

The parent study, published in JAMA Internal Medicine, was authored by Laura C. Hanson, MD, MPH, Sheryl Zimmerman, PhD, Mi-Kyung Song, PhD, RN, Feng-Chang Lin, PhD, Cherie Rosemond, PhD, Timothy S. Carey, MD, MPH, and Susan L. Mitchell, MD, MPH. Hanson et al. assessed family caregiver response to a 20-minute educational video and structured discussion with nursing home professionals following the video. The video contained information on dementia and Goals of Care (GOC), in which three overarching goals were presented as a framework for considering GOC: prolonging life, supporting function and improving comfort. Nursing home staff, including nurses, social workers, therapists and nutritionists (staff involved in patient care planning) viewed the video as part of an hour-long training for how to conduct the goals of care conversation with family decision makers. (Nurse Practitioners and Physicians were invited but seldom participated.) Control facilities would show an instructional video on how to interact with someone with dementia, without any discussion of GOC, and family decision makers would take part of a usual care planning meeting.

Notable results included that family decision makers felt that their quality of communication was enhanced at both 3 months and 9 months post-intervention, and that goal concordance was enhanced between them and clinicians. Nursing home residents in the intervention group were more likely to have completed a POLST Form (there, called the MOST, or Medical Orders for Scope of  Treatment Form); the intervention resulted in increased use of POLST to record goals of care and treatment preferences. Study authors claim that this study “provides the first evidence that a decision aid can be used to enhance implementation of the POLST paradigm.” Additionally, the intervention group experienced half as many hospital transfers with no effect on survival. The notable result is that outcomes can be improved for patients with advanced dementia.

The second study, “Nursing home staff perspectives on adoption of an innovation in goals of care communication,” published to Geriatric Nursing, was authored by Latarsha Chisholm, PhD, MSW, Sheryl Zimmerman, PhD, MSW, Cherie Rosemond, PhD, Eleanor McConnell, PhD, MSN, RN, GCNS, BN, Bryan J. Weiner, PhD, MA, Feng-Chang Lin, PhD, and Laura Hanson, MD, MPH. Chisholm et al. analyzed nursing home staff perceptions of the novel decision aid, the same 20-minute educational video, introduced in the main study. Perceptions varied according to the type of role held (nurse, social worker or other), the amount of formal training/experience in end-of-life care, and demographics of the health care professional surveyed. Nurses and staff who had prior experience with end-of-life care perceived the intervention to be concordant with current practice in discussing treatment goals, and staff who used the intervention more frequently became more confident of its sustainability as a practice tool. Black nursing home staff and social workers in general were less confident and less involved in using the intervention, an indication of cultural and role differences that the study authors felt did not necessarily rule out the usefulness of the intervention. In fact, black nursing home staff still agreed that the GOC intervention would replace their current approach to discussing patient treatment goals. In the case of social workers, it is suggested that, due to their role, they tend to have greater experience and facility with end-of-life care, which may predispose them to perceiving the intervention as less helpful because they already have a strong skill set in the area of discussing GOC.

Jennifer L. Carnahan, MD, MPH, Nicole R. Fowler, PhD, MHSA, and Kathleen T. Unroe, MD, MH authored an invited commentary, “Supporting Family Decision Makers for Nursing Home Residents – A Promising Approach,” published in the same issue of JAMA Internal Medicine. They lauded the study for its aims to both improve quality of communication for goals of care for surrogate decision makers (“one of the most difficult aspects of being a caregiver”) as well as increasing the delivery of palliative care for advanced dementia patients in nursing homes. “The promising results of the goals of care trial provide an important foundation to continue needed research to improve care for this vulnerable population.”


  1. Hanson LC, S Zimmerman, M Song, FC Lin, C Rosemond, TS Carey, and SL Mitchell (2017). Effect of the Goals of Care Intervention for Advanced Dementia: A Randomized Clinical Trial. JAMA Internal Medicine. 177(1):24-31. doi:10.1001/jamainternmed.2016.7031
  2. Carnahan JL, NR Fowler, and KT Unroe (2017). Invited Commentary: Supporting Family Decision Makers for Nursing Home Residents – A Promising Approach. JAMA Intern Med. 177(1):32-33. doi:10.1001/jamainternmed.2016.7065
  3. Chisholm L, S Zimmerman, C Rosemond, E McConnell, BJ Weiner, FC Lin, and L Hanson (2017). Nursing home staff perspectives on adoption of an innovation in goals of care communication. Geriatric Nursing. doi: 10.1016/j.gerinurse.2017.08.001 [ePub ahed of print.]
  4. Medical Orders for Scope of Treatment (MOST)
  5. View the video used in the study