Tufts Medicine Co-Leads $44 Million NIH Grant to Transform Advance Care Planning with Social Work–Driven, Video-Assisted Model

Tufts Medicine Co-Leads $44 Million NIH Grant to Transform Advance Care Planning with Social Work-Driven, Video-Assisted Model

Grant is the largest single-project NIH grant in Tufts Medical Center history

Tufts Medicine Tufts Medical Center has been awarded a $44 million grant from the National Institutes of Health (NIH) to test a fundamentally new model of advance care planning (ACP) that begins conversations about end-of-life care earlier to give patients and caregivers more time to communicate their preferences for future medical care. These conversations will be led by social workers and nurses using video decision-support tools available in 25 languages. This grant is the largest single-project NIH grant in Tufts Medical Center history.

The multi-site study-ACP Educator Video Program to Promote Goal-Concordant Care in Older Patients and those with Alzheimer's Disease and Related Dementias: Advancing Ethical Goals In Society (AEGIS)-is co-led by Michael Paasche-Orlow, MD, MPH, Vice Chair of Research and Professor of Medicine at Tufts University School of Medicine and Director of the Center for Health Literacy Research + Practice at Tufts Medicine. The clinical trial will be conducted across two partner health systems-Northwell Health (28 hospitals) and Dartmouth Health (nine hospitals), the nation's most rural health system-enabling researchers to test the model at scale and to evaluate a specific hypothesis about its effectiveness with rural participants.

A study of this scale is needed to meaningfully advance research in this area. While previous studies have largely focused on documenting patient preferences, the AEGIS Trial is distinguished by its primary outcome: whether patients actually receive care at the end of their life that is concordant with their goals. The trial is also designed to extend the benefits of advance care planning to communities that have historically experienced lower rates of such planning, including patients in rural areas and those with language barriers. By focusing on both the receipt of goal-concordant care and the inclusion of communities often underrepresented in prior research, the AEGIS Trial aims to improve care for the patients who stand to benefit most.

"Advance care planning has traditionally been treated as an end-of-life crisis conversation, happening too late and too rushed for patients to truly reflect on what matters most to them," said Dr. Paasche-Orlow. "This model starts that conversation much earlier and puts social workers-who are trained to have meaningful, sustained conversations about goals and values-at the center of the process. The video tools, available in 25 languages, are designed to overcome health-literacy and language barriers so that every patient, regardless of background, can make an informed, meaningful choice alongside their family."

How the model works

The intervention reimagines ACP as a longitudinal intervention rather than a one-time event:

• Timing: ACP conversations begin approximately two years before death, transforming a last-minute decision into an ongoing dialogue.
• Social work-driven: Specially trained social workers lead the conversations, reflecting evidence that patient-centered discussions of goals and values are a core social-work competency.
• Video decision support: Patients and their families watch a suite of short video decision-support tools together with the social worker, then discuss the topics. The videos, produced in collaboration with ACP Decisions, cover a range of scenarios-including goals of care, palliative care, hospice and limitation of life-sustaining interventions-and are designed to make complex medical decisions visually clear and accessible.
• Multiple languages: The video library is available in 25 languages, addressing the health-literacy and limited-English-proficiency barriers that have historically left many patients behind in end-of-life planning.

The model builds on two decades of research by Dr. Paasche-Orlow and collaborators on video-assisted ACP, including randomized trials in nursing homes, oncology, heart failure and a variety of hospital and community settings.

"Nearly all the data that has been collected on advanced care planning has been focused on urban areas, when one in five patients live in rural areas across the country," said principal investigator Angelo E. Volandes, MD, MPH, Chief Research Officer at Dartmouth Health and Senior Associate Dean of Clinical and Translational Research at the Geisel School of Medicine at Dartmouth. "By studying the impact of innovative, end-of-life planning across such a wide patient population-in both rural and urban areas-this study has the potential to impact how we deliver care to all communities across the country. By empowering patients, families and care teams, this study aims to help close the wide gap between the way patients want to live their lives in their final years and how care has actually been delivered."

"Being able to follow people longitudinally is very exciting," said co-investigator Edith Burns, MD, Professor of Medicine, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell Health and Director of Research for the Division of Geriatrics and Palliative Medicine. "In the past, advance care planning has often been a one-time conversation, but things change over time. This study has potential to improve communication across the entire healthcare system, educate primary care clinicians and teams and address the fragmentation that creates communication challenges along the way."

The study-ACP Educator Video Program to Promote Goal-Concordant Care in Older Patients and those with Alzheimer's Disease and Related Dementias: Advancing Ethical Goals In Society (AEGIS)-is supported by the National Institute on Aging of the National Institutes of Health under Award (Project) Number 1U19AG090271-01A1.

About advance care planning

Advance care planning is the process by which patients reflect on and communicate their preferences for future medical care in the event they become unable to speak for themselves. Despite its importance, studies show that the majority of older adults and patients with serious illness have never communicated their preferences to clinicians or completed ACP documents. Disparities in ACP are especially pronounced among patients in rural areas and those with limited health literacy and limited English proficiency.