Fundamentally, advance care planning aims to empower patients. The results of our study demonstrate the importance of meeting patients where they are.

Angelo Volandes, MD, MPH
Investigator, Massachusetts General Hospital

BOSTON – New research, published in JAMA Network Open shows that using a comprehensive approach to engage patients in Advance Care Planning (ACP) during the COVID-19 pandemic effectively improves the opportunity for ACP discussions and documentation as well as equitable healthcare delivery.

ACP is an ongoing conversation that involves shared decision making to clarify and document an individual’s wishes, preferences, and goals regarding medical care. This process is critically important to ensuring patients receive the medical care they want in the event they lose the capacity to make their own decisions. Despite the crucial nature of ACP, most Americans do not have their medical wishes documented.

“Advance care planning has traditionally been thought of as a hypothetical, a question of ‘what I might want if I get sick,’” points out Angelo Volandes, MD, MPH, a physician and researcher in the division of General Internal Medicine at Massachusetts General Hospital. “An ACP conversation, however, is only hypothetical when it is engaged in too late. Throughout the COVID-19 pandemic, far too many families have exhausted themselves trying to answer this question, agonizing over what their loved one might have chosen for their care if they had been given the chance.”

Volandes and colleagues initiated the Advance Care Planning: Communicating with Outpatients for Vital Informed Decisions (ACP-COVID) pragmatic trial to discover whether ACP participation during the pandemic would increase following implementation of video decision aids and clinician communication skills training. The team also explored how these interventions would impact ACP documentation among patients from ethnic and racial minority groups, specifically African Americans and Hispanics.

The open-cohort trial included a large, diverse patient population aged 65 and over from twenty-two outpatient clinics at Northwell Health, the largest healthcare system in New York State. ACP documentation from three six-month time periods was compared: pre-COVID-19, first wave of COVID-19, and an intervention period. The findings revealed that ACP documentation was significantly greater among all groups during the intervention period, with African American and Hispanic patients showing the largest increases.

“The stark disparity in COVID-related outcomes for African American and Hispanic patients highlights a reality already known by many: our healthcare system routinely fails to meet the needs of minority patients. No one intervention or initiative is going to correct all those failings though advance care planning, through engaging and empowering patients, is one of the most effective, immediate ways to address disparities in care,” adds Volandes, who is also an associate professor of Medicine at Harvard Medical School.

“Fundamentally, advance care planning aims to empower patients. The results of our study demonstrate the importance of meeting patients where they are,” adds Volandes. “Whether that means providing information in their native language or sharing educational material via text rather than a patient portal, if advance care planning is to be about the patient and we need to find ways to ensure that they feel they have the knowledge and ability to make decisions alongside their clincians when they deem the time is right. COVID-19 has made ACP more important than ever, and especially in communities that have been hardest hit by the pandemic.”

About the Massachusetts General Hospital
Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In August 2021, Mass General was named #5 in the U.S. News & World Report list of "America’s Best Hospitals."