Current Research Involving Respecting Choices^®

Funded by the Indiana State Department of Health, this 3-year research project will study the improvement in the quality of life of nursing home residents in southwest Indiana by integrating the Respecting Choices Last Steps® (LS) model into each nursing home culture.

The study, to conclude in May 2020, will involve 15 nursing homes with a projection of impacting up to 750 nursing home residents. The principal investigator is Kevin Valadares, PhD, from University of Southern Indiana’s New Harmony Conversations Team. For more info about this research project and ongoing updates, click here: http://www.usi.edu/acp.

Stephanie Anderson, DNP, RN, Deputy Executive Director of Respecting Choices, is the lead consultant on the study.

In a PCORI-funded study, the principal investigator, Kimberly Johnson, MD, MS, of Duke University, will conduct a comparative effectiveness trial to determine which of 2 interventions will improve the quality of palliative care for older African Americans. The focus of the study is important because African Americans are less likely than Caucasian Americans to participate in advance care planning (ACP) and receive lower-quality palliative care.

The 2 interventions are these: a structured ACP approach (Respecting Choices) or a patient-guided, self-management approach (Five Wishes). The study will be conducted in 5 states at 10 different clinical sites, which will be randomly assigned to deliver one intervention or the other to participants. The study plans to enroll 800 older adults and their caregivers, half of whom will be African American. The Respecting Choices arm of the study will use the First Steps® ACP process for people with a chronic illness. The study is set to end in September 2022.

Linda Briggs, MSN, MA, RN, will assist with the Respecting Choices training and fidelity monitoring, as well as serve on the research advisory committee.
For more info about this research project, click here: https://www.pcori.org/research-results/2017/reducing-disparities-quality-palliative-care-older-african-americans-through

The ACTION Trial is a European Union-funded study being conducted in 6 European countries: the Netherlands, Belgium, the United Kingdom, Denmark, Slovenia, and Italy. The coordinating team includes: Ida Korfage, Agnes van der Heide, and Judith Rietjens from the Erasmus Medical Center in the Netherlands. The study intends to enter over 1,300 subjects and the population is cancer patients with a 12-month life expectancy. The intervention is a specially created First Steps and Last Steps® advance care planning process (ACP) for this European population. The methodology is a multi-center randomized control trial. In this case, 25 hospitals will be randomized to either intervention or control arm. New subjects will be enrolled through May 2018 and the project will conclude at the end of 2018.

Linda Briggs and Bud Hammes are consultants for this study.

The FAmily-CEntered Advance Care Planning for Teens with Cancer (FACE-TC) study, funded by the National Institutes of Health (NIH)/National Institute of Nursing Research (NINR), is being conducted in two sites: St. Jude’s Research Hospital and Akron Children’s Hospital. This study includes the testing of the Next Steps™ ACP process for teens with cancer. This is a randomized control trial. The research project will end April 2020.

The principal investigator for the study is Maureen Lyon, PhD, from Children’s National Health System/Children’s Research Institute in Washington, D.C. Linda Briggs is a co-investigator.

The FAmily-CEntered Advance Care Planning (FACE) in Adults with HIV/AIDS study is funded by the National Institutes of Health (NIH)/National Institute of Nursing Research (NINR). It is a randomized control trial of 222 primarily African-American adults living with HIV/AIDS and their chosen surrogate decision makers. It includes the testing of the Next Steps ACP process in the target population. The research will end in June 2018.

The principal investigator is Maureen Lyon, PhD, from Children’s National Health System/Children’s Research Institute in Washington, D.C. Linda Briggs is a co-investigator.

Funded by the American Cancer Society, this is a feasibility study conducted at the University of Minnesota to test the efficacy of the FACE intervention that uses the Next Steps ACP planning process as part of the intervention with adolescents and young adults with blood and bone marrow transplantation. The research will end in June 2018.

Dr. Jennifer Needles is the principal investigator. Linda Briggs is a consultant.

Indiana University’s OPTIMISTIC project is an ongoing, $30.3 million, Centers for Medicare and Medicaid Services (CMS) Center for Innovation demonstration project running from September 2012 to September 2020. In the first phase of the project (2012-2016), RNs and NPs were embedded in 19 central Indiana nursing facilities to deliver a multicomponent program to reduce avoidable hospitalizations. This includes training project nurses as Last Steps® (LS) ACP Facilitators. In phase 2 (2016-2020), an additional payment model is being tested in a cohort of new facilities as well as current facilities.

OPTIMISTIC is led by Dr. Greg Sachs and Dr. Kathleen Unroe with the Indiana University Center for Aging Research and the Indiana University Division of General Internal Medicine and Geriatrics, together with local partners, including the University of Indianapolis Center for Aging and Community.

The Quality of POLST Decisions in the Nursing Facility Setting study is funded by the National Institutes of Health (NIH)/National Institute of Nursing Research (NINR). The objective is to evaluate the quality of Physician Orders for Life Sustaining Treatment (POLST) decisions by determining the level of discordance between the existing POLST orders and the decision-maker preferences. Another goal of the study is to identify modifiable factors associated with discordance. The Respecting Choices Last Steps® facilitated planning process is being used as the method of determining the subjects’ preferences as they apply decisions on the POLST paradigm form. The study will conclude May 2019.

The principal investigator is Susan Hickman from the Indiana University School of Nursing. Bud Hammes is a consultant on this study.

The Quality of Advance Care Planning Documentation in the Nursing Home study is funded by the Retirement Research Foundation and has a similar objective as the NIH/NINR-funded study (described above). However, this study will look at ACP documentation in nursing facilities where the Physician Orders for Life Sustaining Treatment (POLST) paradigm is not used. This will permit comparisons between facilities that do and do not use POLST. The Respecting Choices Last Steps® facilitated planning process is being used as the method of determining the subjects’ preferences. The study will conclude September 2018.

Susan Hickman from the Indiana University School of Nursing is the principal investigator. Bud Hammes is a consultant.