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

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

Reflections

Julia Gambino

This Team in the News

Meet the Members of the 2022-2023 Student Advisory Council

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