REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2020-2021)

Background

Patients who are facing a serious illness must make numerous complex healthcare decisions that will 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 would like, or treatment that is intended to prolong survival when their goals are really to maximize comfort and preserve quality of life.

Patients who do not 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 themselves and their families. Poor communication also leads to increased side effects of 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.

Project Description

Launched in 2017, REGAIN is a collaboration between Duke Health (including the School of Medicine and the School of Nursing) and Duke University. The overarching aim of REGAIN is to implement a roadmap for goals of care conversations for Duke Health patients who have serious illnesses. 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 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 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, healthcare utilization and survival?

Team members will work on individual 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.

Anticipated Outputs

Dashboard defining communications needs and healthcare utilization in Duke Health; preliminary datasets; papers for publication; grant proposals

Timing

Fall 2020 – Spring 2021

  • Fall 2020: Begin biweekly works-in-progress seminars; begin weekly meetings with mentors; begin monthly meetings with project manager; begin data collection and analysis; prepare midproject presentations
  • Spring 2021: Initiate projects; measure and revise project methods and goals; analyze data; prepare project reports

See earlier related team, REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2019-2020).

Hearts.

Team Leaders

  • Jessica Beliveau, School of Medicine-Medicine: General Internal Medicine
  • David Casarett, School of Medicine-Medicine: General Internal Medicine
  • Karen Steinhauser, School of Medicine-Population Health Sciences

/graduate Team Members

  • /graduate
  • Dalton Hughes, Neurobiology-PHD

/undergraduate Team Members

  • /undergraduate
  • Alexandra Merz, Chemistry (AB)
  • Mihir Patel, Biology (BS)

/yfaculty/staff Team Members

  • Christopher Cox, School of Medicine-Medicine: Pulmonary, Allergy and Critical Care Medicine
  • Sharron Docherty, School of Nursing
  • Arif Kamal, School of Medicine-Medicine: Medical Oncology
  • Thomas Leblanc, School of Medicine-Medicine: Hematology
  • Monica Lemmon, School of Medicine-Pediatrics: Neurology
  • Laura Porter, School of Medicine-Psychiatry and Behavioral Sciences
  • Katherine Ramos, School of Medicine-Psychiatry: Behavioral Medicine