Community-Generated Palliative Care Telemedicine for Rural Black and White Elders Palliative care programs and consultations have both been shown to reduce symptoms, alleviate suffering, improve family satisfaction, enhance effectiveness of care,1-6 and are associated with hospital cost savings.7-9 There are areas in the US where palliative care is not available, especially in rural areas of the Southern United States.10-12 Telemedicine is increasingly used to deliver health care for a variety of illnesses,13-17 but there has been only one randomized clinical trial of a telemedicine palliative care program in the US.3,4,18 Seventy five percent of South Carolina (SC) is rural, and 33 percent of its residents reside in rural areas19 where poverty and unemployment rates are high, and per capita income is low.20 African Americans comprise 28 percent of those who live in rural SC.21 Rural residents experience disparities in health outcomes and health care access.22 Previous studies of urban patients indicate that race, ethnicity and culture strongly influence end of life-sustaining measures. Significantly more African Americans choose life-sustaining therapies regardless of prognosis,23-25 have strong spiritual beliefs that fate is in God's hands,25,26 and choose to include family members and religious leaders in the decision-making process.12,27-29 Culturally appropriate models of palliative care that take into consideration cultural preferences of terminally ill rural patients and their family caregivers are not currently available in the US. The proposed study will be the first to use Community Based Participatory Research (CBPR)30-33 to design and test the feasibility, acceptability and short-term effectiveness of a palliative care (PC) consult program delivered via telemedicine for African American (AA) and White (W) rural elders and their families.
Specific Aims i nclude: 1. Develop a pilot PC consult program for AA and W inpatients aged 60 and over facing a terminal illness. This will be based on PC principles, and themes on end of life care preferences that emerged from recently completed focus groups (AA and W family members whose loved one had recently passed away). The program will be developed in collaboration with a Community Advisory Group (AA and W representatives from the focus groups.) 2. Assess pilot program's feasibility, acceptability, and short-term effectiveness on satisfaction with end of life care (primary) and ICU referrals and hospitalizations (secondary) outcomes. Project outcomes will be used to develop an RCT to test the effectiveness of a telemedicine PC program in enhancing end of life care for rural AA and W elders and their families.
A culturally informed telemedicine palliative care consult program for rural African American and White elders has the potential to greatly reduce suffering, enhance continuity of care, address the specific, and potentially diverse end of life care preferences of ethnic elders and their family members, and enhance family satisfaction with end of life care received. The use of community-based participatory research (CBPR) principles increases the likelihood of program acceptability and adoption across multiple sites, as well as the likelihood of program maintenance once grant-funding ends. If successful, the proposed project can serve as an evidence-based model that can be adapted for use in other rural areas, and with other ethnic minority groups.
|Elk, Ronit (2017) A Community-Developed, Culturally-Based Palliative Care Program for African American and White Rural Elders with a Life-Limiting Illness: A Program By The Community for the Community. Narrat Inq Bioeth 7:36-40|
|Bravo, Rosana Leos; Gutierrez, Angela; Young, Maria-Elena De et al. (2017) Full Collection of Personal Narratives. Narrat Inq Bioeth 7:4-40|
|Elk, Ronit (2016) The First Step Is Recognizing, Acknowledging, and Respecting the Inequity, Disrespect, and Disregard Our African American Patients Have Experienced. J Palliat Med 19:124-5|
|Bakitas, Marie A; Elk, Ronit; Astin, Meka et al. (2015) Systematic Review of Palliative Care in the Rural Setting. Cancer Control 22:450-64|