REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2022-2023)

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'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 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 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 health care decisions become more complicated, it becomes increasingly important to ensure that all patients have access to thoughtful, open, and accurate communication about their goals.

Project Description

REGAIN is a multi-year collaboration between Duke Health (including the School of Medicine and the School of Nursing) and Duke University. The aim is to develop and implement a roadmap for goals of care conversations for patients with serious illness in Duke Health. Led by the Duke Center for Palliative Care and supported by the health system and academic partners, REGAIN is Duke Health's strategy for ensuring that all patients can get open accurate, and empathetic communication about their goals for care. 

When REGAIN began, only 2% of Duke Health patients who died had a goals of care conversation. Since then – due in part to the active involvement of this ongoing Bass Connections team – almost half of Duke Health patients have documented goals of care conversation in the last 6 months of life.

This project will investigate patient-provider communication in two complementary ways via a “hub and spoke” model.

Mentored projects (‘spokes’): First, each student will be assigned to a mentor on the REGAIN team. Students will work on projects within the mentor's field of research, selected for their fit with REGAIN's overarching goal of improving communication in serious illness. The projects for 2022-2023 are to be determined.

Central activities (‘hub’): In addition to individual mentored projects, all students and selected faculty will participate in a series of works-in-progress groups and seminars. These sessions will be arranged throughout the year, occurring 3-4 times/month, and will be designed to allow students to share the results of their projects with other students and faculty. These sessions will also provide an opportunity for faculty mentors to identify shared interests and to explore potential collaboration within the REGAIN framework.

Anticipated Outputs

Research findings for use in future publications and grant proposals; further implementation of DATE (Dashboard of Aggressive Treatment near the End of life); conference presentations

Student Opportunities

Ideally, this project team will be comprised of 1 graduate student and 8 undergraduate students. The team should be diverse with respect to both levels and disciplines, including learners from Duke University (e.g., undergraduates, graduate students, post-docs) and Duke Health (e.g., medical students, nursing students, residents and fellows). Students from all disciplines/majors are welcome to apply. Students from the following areas might find REGAIN most consistent with their interests: social sciences, data science/computer science, pre-health (medicine/nursing/healthcare administration), humanities/ethics and theology.

REGAIN offers learners a unique opportunity to gain experience in wrestling with real world problems in a complex healthcare system. Learners will learn healthcare approaches to improving patient-centered care, engage with clinical stakeholders, contribute to publications and presentations, participate in data management and analysis, learn how to communicate within a multi-disciplinary team, and benefit from professional development and feedback as well as peer-level support. Students will also be supporting throughout the process of poster development and grant and publication writing, with the understanding that, for some, this may be a first exposure to the field of academic medicine. 

Simran Bansal will serve as the project manager.

Timing

Fall 2022 – Spring 2023

  • Fall 2022: Begin mentored research with faculty; attend biweekly core meetings with readings, guest lecturers and discussion of ongoing mentored projects
  • Spring 2023: Continue mentored research with faculty; attend biweekly 'core' meetings with readings, guest lecturers, and discussion of ongoing mentored projects

Crediting

Academic credit available for fall and spring semesters

See earlier related team, REGAIN: Roadmap for Evaluating Goals in Advanced Illness Navigation (2021-2022)

 

Image: Patient care, courtesy of Duke Center for Palliative Care

Patient care.

Team Leaders

  • David Casarett, School of Medicine-Medicine: General Internal Medicine
  • Monica Lemmon, School of Medicine-Pediatrics: Neurology
  • Karen Steinhauser, School of Medicine-Population Health Sciences

/undergraduate Team Members

  • Simran Bansal
  • Alice Chun, Public Policy Studies (AB), Global Health (AB2)
  • Haripriya Dukkipati, Biology (BS)
  • Lauren Howard
  • Daniel Lee

/yfaculty/staff Team Members

  • Sharron Docherty, School of Nursing
  • Brystana Kaufman, Fuqua School of Business-Health Sector Management Program
  • Amie Koch, School of Nursing
  • Thomas Leblanc, School of Medicine-Medicine: Hematology
  • Jessica Ma, School of Medicine-Medicine: General Internal Medicine
  • Katherine Ramos, School of Medicine-Psychiatry: Behavioral Medicine
  • Sharla Rent, School of Medicine-Pediatrics: Neonatology
  • Joseph Winger, School of Medicine-Psychiatry and Behavioral Sciences