- Three Southeast hospitals are partnering with the University of Alabama at Birmingham on a study to determine whether a telehealth platform can improve palliative care options for rural African-Americans.
Community hospitals in Aiken, S.C., Alexander City, Ala., and Picayune, Miss., will coordinate the connected health project with a team led by Ronit Elk, PhD, associate director of the Southeast Institute for Innovation in Palliative and Supportive Care at UAB, and Marie Bakitas, DNSc, a professor in the UAB School of Nursing and the associate director of the Center for Palliative and Supportive Care.
“By living in a rural area, people with serious illness have a very high risk of not getting the right care,” Elk said in a press release supplied by UAB. “There are long distances to treatment centers, not enough healthcare professionals, and of those who are healthcare providers, there are very few with palliative care clinical experience.”
Some 352 African-American and white patients of the three hospitals will be involved in the five-year study, which will compare a telehealth-based program with traditional in-person palliative care.
Researchers hope to identify specific challenges faced by rural African-Americans in seeking palliative care, as well as develop a virtual health platform for care management and coordination. Elk said studies have shown that African-Americans don’t use palliative care when they should.
“African-Americans often value faith, spiritual beliefs and the guidance of a pastor when coping with illness and making treatment decisions,” she said. “Yet physicians rarely ask patients about their spirituality. African-Americans’ reliance on hope and faith in God’s healing power can be at odds with the physician’s need to share a terminal prognosis.”
“They also did not want to talk about advanced care planning with their physician,” she added, noting patients often avoid talking about palliative care. “In this study, the palliative care physician will follow a culturally based protocol on how to approach end-of-life care with the patient based on his or her cultural preference.”
The project is the second in the region to contemplate palliative care on a telehealth platform.
At the Medical University of South Carolina in Charleston, providers are using a three-year, $1.3 million grant from the Duke Endowment to explore a telehealth-based statewide palliative care platform.
The project comes on the heels of a bill signed into law in May by South Carolina Gov. Henry McMaster requiring the state to evaluate its healthcare resources for seriously and terminally ill patients and establishing a Palliative Care and Quality of Life Study Committee.
“There’s a lot that goes into this type of care,” said Emily Sigmon, the urgent care coordinator at the MUSC Health Center for Telehealth, ticking off family meetings, advanced care planning, pain and symptom management and even end-of-life directives. “You need to identify everyone involved, make sure the family is included, and create a program that meets all of their needs.”
A key element to creating a telehealth-based palliative care program, Sigmon said, is educating providers about what goes into such a program. There’s a “delicate balance,” she said, between providing medical treatment and compassionate care for patients nearing the end of their life.
“You’re creating a team-based approach,” she said, “that goes beyond clinical care. You want to focus on being there when you’re needed.”
Researchers at UAB are also looking at a team-based program.
“The physicians in this study are excited about partnering with hospitalist colleagues in rural hospitals, as well as the members of the community and the other interdisciplinary team members including nursing and pastoral care,” Rodney Tucker, MD, director of the Center for Palliative and Supportive Care at UAB, said in the press release. “One of the hopeful downstream effects with this study is that we may see an increased percentage of patients who wish to remain in their community hospital or in their homes rather than traveling to a larger medical center. This would be exciting for our rural hospitals as well.”
“This method is called community-based participation research, which is a method where academics partner with communities,” added Elk. “It has been proved over and over to reduce health disparities. The community advisory group guides the study.”