REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2019-2020)
Patients facing a serious illness must make numerous complex healthcare decisions that determine what treatment they receive, what their quality of life will be and how long they will survive. Too often, patients and their families must make these decisions without adequate communication about their hopes, fears, values and goals. The result is that many patients receive more treatment than they’d like, or treatment that is intended to prolong survival, when their goals are really to maximize comfort and preserve quality of life.
Patients who don’t have access to open, accurate and empathetic communication about their goals may receive treatment that is overly aggressive and costly, which creates financial burdens for them and for their families. Poor communication also leads to increased side effects from treatment that could have been avoided and worse quality of life due to additional time undergoing unnecessary tests and treatment.
As the population ages, and as healthcare decisions become more complicated, it is increasingly important to ensure that all patients have access to thoughtful, open and accurate communication about their goals.
Launched in 2017, REGAIN is a novel collaboration between Duke Health (including the School of Medicine and the School of Nursing) and Duke University. The overarching aim of REGAIN is to develop and begin to implement a roadmap for goals of care conversations for patients with serious illnesses in Duke Health. Led by the Duke Center for Palliative Care and supported by the health system and academic partners, REGAIN will be Duke Health’s strategy for ensuring that all patients have access to open, accurate and empathetic communication about their goals for care.
This Bass Connections project is designed to integrate REGAIN into the Duke community and create a community of learners interested in the intersection of serious illness care, healthcare organization and policy.
The project team will wrestle with a series of difficult conceptual and strategic questions that will guide Duke Health’s efforts to improve communication for all patients, such as:
- What does good communication look like?
- Where are the needs for communication greatest?
- What are the barriers to communication in a busy clinical setting?
- Can advances in communication improve health-related outcomes such as quality of life, health care utilization and survival?
Student team members will work on individual mentored projects that will yield new datasets, papers for publication and preliminary data and analysis for a grant proposal. The team will also produce a dashboard that will define communication needs and healthcare utilization in Duke Health.
Dashboard defining communications needs and healthcare utilization in Duke Health; preliminary datasets; papers for publication; grant proposals
Summer 2019 – Spring 2020
- Summer 2019 (Optional): Develop team charter; identify project areas and interventions
- Fall 2019: Biweekly works in progress seminars; weekly meetings with mentors; monthly meetings with project manager; data collection and analysis; prepare mid-project presentations
- Spring 2020: Biweekly works in progress seminars; weekly meetings with mentors; monthly meetings with project manager; measure and revise project methods and goals; analyze data; prepare project reports
Team Outputs to Date
Roadmaps for Health Communication (Fortin Foundation Bass Connections Virtual Showcase 2020)
Spreading HoPE: Helping Patients and Families Access Information about Hospice through a Web-based App (poster by Mihir Patel, Debra Davis, Fred Friedman, Jon Nicolla, Vicki Quintana, Michala Ritz, Margaret Salinger, Arif Kamal; runner up, Bass Connections 2020 poster competition)
Attachment Style, Partner Communication and Physical Well-being among Couples Coping with Cancer (poster by Gabby Braun, Katherine Ramos, Laura Porter)
How Hope Influences Health Care Provider – Parent Communication for Infants with Complex Congenital Heart Conditions (poster by Arthi Kozhumam, Amie Koch, Tara Albrecht, Heeyeon Son, Sharron Docherty)
This Team in the News
See related team, REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2020-2021).
Image by Truthseeker08, CC0 Creative Commons
- Jessica Beliveau, School of Medicine-Medicine: General Internal Medicine
- David Casarett, School of Medicine-Medicine: General Internal Medicine
- Sharron Docherty, School of Nursing
- Karen Steinhauser, School of Medicine-Population Health Sciences
/graduate Team Members
Dalton Hughes, Neurobiology-PHD
Ashlee Hutcheson, Adult-Gerontology NP - MSN
Johnna Wellesley, Divinity-MDV
/undergraduate Team Members
Arthi Kozhumam, Biology (BS), Global Health (AB2)
Heesu Park, Biology (BS), Spanish (AB2)
Mihir Patel, Biology (BS)
/yfaculty/staff Team Members
Tara Albrecht, School of Nursing
Christopher Cox, School of Medicine-Medicine: Pulmonary, Allergy and Critical Care Medicine
Arif Kamal, School of Medicine-Medicine: Medical Oncology
Amie Koch, School of Nursing
Thomas Leblanc, School of Medicine-Medicine: Hematology
Monica Lemmon, School of Medicine-Pediatrics: Neurology
Collin Mueller, Arts & Sciences-Sociology
Laura Porter, School of Medicine-Psychiatry and Behavioral Sciences
Katherine Ramos, School of Medicine-Psychiatry: Behavioral Medicine