Hospice care attends to patients and families during end-of-life. The care options duringthis challenging time include caring for the patient in a holistic manner using an interdisciplinary health care team to assist with pain and symptom management, psycho-social-spiritual care, medical equipment, medications, and bereavement support. Even though hospice care has been available in the U.S. for more than 40 years, many rural Appalachia families lack knowledge about its role in end-of-life care.
Sandy Mixer, associate professor, and Mary Lynn Brown, clinical professor, both in the College of Nursing, collaborated with and built upon the expertise of families, churches, community members, health care providers, and end-of- life care experts in the college, UT communications videographers and extension agents, and education technology specialists to develop culturally relevant materials for educating individuals in rural Appalachia about end-of-life care.
Honoring Life’s Journey (HLJ) is founded on the idea of educating people in this region and helping them through the process of death and mourning the loss of loved ones. Based in Scott County, Tennessee, the program provides people with hospice and medical care, and supports families through the end-of-life process. The three-year funded project created a community-academic partnership with residents and county, church, and community leaders to increase families’ knowledge about and use of end-of-life care services. The goal is to serve individuals and families with end-of-life care education to contribute to their quality of life while helping foster dignified death.
Rural Appalachia has a unique geographic, cultural, and economic heritage. Appalachians’ rich cultural values and beliefs include a sense of belonging, love of the mountains, strong family ties, firm faith, hard work ethic, and fierce independence and pride. Scott County, in the heart of rural Appalachia, is designated a medically underserved and health professional shortage area, and residents there have limited access to health care. According to Mixer, low literacyand poverty are widespread, with 26 percentof Scott County’s residents living below the poverty level as compared to 15.8 percent in Tennessee and 13 percent in the US.
HLJ focuses on the rural Appalachian community because of their lack of knowledge on end-of-life care services. Through education, rural Appalachians will be able to have more justified deaths with appropriate funerals, as well as have more support and care at the end of their lives. The goal is for Honoring Life’s Journey to expand past the churches and into a nursing clinical course. This would ensure approximately 140 future nurses are taught each year as well as those they serve in community clinical settings.Currently, a train-the-trainer format is used to teach church and community leaders and residents, who will in turn teach individuals and families about end-of-life care resources. This model provides the necessary tools and format for sustained community-based education.
Embedding training in a nursing clinical course ensures approximately 140 future nurses are taught each year as well as those they serve in community clinical settings and allows for the collection of research data.
HLJ plans to impact a broader demographic through UT Extension outreach in Tennessee counties. Recently, Scott County community members trained undergradåuate nursing students. These students are now teaching people served through their community health clinical experiences. The participants are usually seniors living in residence facilities.
The project has since expanded beyond Scott County to other counties in East Tennessee.