Hospice Foundation of America and major universities seek community partners for advance care planning project
Reducing health disparities by examining the effectiveness of tools that encourage end-of-life conversations may improve the likelihood that underserved patients receive care that is consistent with their values and beliefs. To achieve this outcome, Hospice Foundation of America (HFA) has partnered with researchers at Penn State College of Medicine and University of Kentucky and today announced they are launching the Project Talk Trial, a five-year, national, randomized controlled trial funded by the National Institutes of Health (NIH). The team seeks host organizations to participate in their study, which will evaluate different approaches for engaging underserved individuals across the country in end-of-life care planning.
Compared to white Americans, underserved populations in the United States are far less likely to have discussed their wishes about medical treatment with loved ones or to have completed advance directives. Project Talk Trial researchers noted that underserved populations have been disproportionately affected by the COVID-19 pandemic and are more likely to die from the disease, making it critical to examine effective strategies to help them complete advance care planning.
Project leaders said they hope to partner with community-based organizations to evaluate the impact of several approaches to promote advance care planning in underserved populations including those from ethnic and racial minority backgrounds, rural communities or low-income areas.
Dr. Lauren Jodi Van Scoy, associate professor of medicine, humanities and public health sciences at Penn State College of Medicine and lead researcher for Project Talk Trial, said that in her role as a critical care physician at Penn State Health, she sees how advance care planning helps families deal with end-of-life issues when their loved ones are critically ill.
“These issues often come to a head in the intensive care unit,” Van Scoy said, “It’s heartbreaking to see families struggle with decisions about life support. The stress and burden are so much worse for families who haven’t done advance care planning, which is why this project is so critical.”
Advance care planning involves patients considering the medical interventions they would or would not want if they were facing a medical emergency, such as being placed on a ventilator for breathing support or being resuscitated when their heart stops.
The researchers said the process of advance care planning should begin long before a crisis and include conversations with loved ones about end-of-life health care preferences. They also said it should result in completing an advance directive document that names a health care decision maker (sometimes called a proxy, agent or spokesperson) and guides how medical decisions should be made if the patient cannot communicate.
“We look forward to working with the Penn State College of Medicine, the University of Kentucky and scores of community organizations on this timely, important project,” said Amy Tucci, president of HFA, “It’s more crucial than ever that we learn which advance care planning strategies work best to support patients’ care goals.”
Individuals or organizations with experience hosting community events for underserved populations are encouraged to apply. There is no cost for organizations to host a Project Talk event. If accepted, organizations will be provided training and resources to run an event. More information about the Project Talk Trial can be found at projecttalktrial.org.
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