September 2020 | Issue 1 | Page 3
First culturally based end-of-life care protocol created by community members published by Holly Gainer Culture shapes how people make meaning out of illness , suffering and dying , and it influences their responses to diagnosis , prognosis and treatment preferences . Researchers at the University of Alabama at Birmingham have created the first culturally based protocol for patients living with a serious illness or facing end-oflife care . The protocol , which was published in Health Equity , was developed by Ronit Elk , Ph . D ., a researcher in the Division of Gerontology , Geriatrics and Palliative Care at UAB , in partnership with a Community Advisory Board made up of African Americans and white community members living in Beaufort , South Carolina . “ End-of-life care values in the United States are historically rooted in values that represent the cultural and religious values of the white middle class , values that often do not apply , or even contradict , the values of people of different cultures or ethnicities ,” Elk said . “ Lack
In partnership with community members , researchers at UAB created the first culturally based protocol for patients living with a serious illness or facing end-of-life care .
of respect for cultural differences may compromise care for seriously ill minority patients . Until recently , culturally appropriate models of palliative and end-of-life care have not been available in the United States .”
The Advisory Board members included those who had cared for a loved one living with a serious illness or had been a caregiver to a loved one who had recently died , community leaders , and hospital staff , with equal numbers of African American and white members . Developing the protocol took three and a half years of monthly meetings . “ This is the very first study that has developed a program based on African American and white rural Southerners ’ cultural values and was created by community members . It is a model that can be replicated for so many other programs that want to understand and respect what people in underserved communities value ,” Elk said .
Ronit Elk , PhD speaks to the group during the training session .
Elk is mentoring other palliative care physicians in Ghana , Puerto Rico and , next year , South Africa , in using this model in their countries . Since the paper has been published , researchers across the United States have contacted Elk to find out how they can replicate it in other minority populations . Gardenia Simmons-White , a member of the Community Advisory Board , says working with the advisory group and learning of each other ’ s beliefs helped them create the protocol and form a mutual respect of each other ’ s cultures . “ When you take care of people , you care for people of all different nationalities and beliefs , and you have to understand that everyone has different beliefs ,” Simmons-White said . “ You have to understand that everyone ’ s culture is different , and it is especially true of how African Americans and Caucasians react to end-of-life diagnoses . We need to know each other ’ s cultures in order to ask questions and not have stereotypical beliefs . And we need to understand our history in order to have respect .” “ This is an example of what is possible when health care providers truly listen to the voices of underserved or underrepresented groups , and build health care programs based on those communities ’ cultural values and preferences ,” Elk explained . “ We are now conducting a randomized controlled trial to test the efficacy of this culturally based intervention in three Southern rural hospitals in three states : Alabama , Mississippi and South Carolina .”
Other authors of the paper include Marie Bakitas , DNSc , a Professor of Nursing at the UAB School of Nursing ; Linda Emanuel , M . D ., and Joshua Hauser , M . D ., of Northwestern University ; and Sue Levkoff , Sc . D ., of the University of South Carolina .