Rural patients with life-limiting illness are at very high risk of not receiving appropriate care due to a lack of health professionals, long distances to treatment centers, and limited palliative care (PC) clinical expertise. Although culture strongly influences people's response to diagnosis, illness and treatment preferences, culturally-based care models are not currently available for most seriously-ill rural patients and their family caregivers. Public health consequences of these problems are: 1) Access-Rural patients have sub-optimal or no access to PC and 2) Acceptability-Even when palliative and hospice services are available, African Americans (AA), compared to Whites (W) are more likely to receive poor quality care due to a culturally- insensitive health care system and mistrust of health care providers. As a result, rural patients, especially from minority groups, experience significant suffering from uncontrolled symptoms that PC expertise could alleviate. Our R21 Tele-consult pilot studyand our other telehealth RCTs have systematically incorporated diverse community stakeholder input on how to best design and deliver culturally-based palliative care for rural communities. Our Tele-consult Intervention was developed by and for rural, Deep South AA and W patients and providers, and uses state-of- the-art telehealth methods, to provide PC consultation to hospitalized seriously-ill patients and family. Using National Consensus Project guidelines that have been adapted through a culturally-based, community-developed CBPR process, we developed a PC Tele-consult intervention whereby a remote PC expert conducts a comprehensive PC patient assessment, in collaboration with local providers, and following interdisciplinary PC team review, makes recommendations. Two additional structured follow up contacts of PC expert with patient and local provider ensure care coordination and smooth transitions, allowing patients to receive guideline-concurrent PC care in their communities. We propose a three-site, randomized controlled trial to test the efficacy of a community-developed, culturally-based PC Tele-consult program for 352 hospitalized AA and W older adults with life-limiting illnesses. We have partnered with 3 rural, Deep South community hospitals, located in South Carolina, Alabama, and Mississippi that lack PC resources and recognize the potential benefits that PC expertise via Tele-consult can provide. Prior to study launch, we will assemble a local Community Advisory Group at each site to provide further input and assist in communicating study goals to patients.
Study aims are to compare a robust, culturally-based PC Tele-consult program to usual hospital care to determine whether a culturally-based PC Tele-consult program leads to: 1. Lower symptom burden in hospitalized AA and W older adults with a life-limiting illness (primary aim) and 2. Higher patient and caregiver quality of life, care satisfaction, and lower caregiver burden at Day 7 post-consultation, and lower resource use 30-days post-discharge (secondary aim.) Impact: Ours is one of the first culturally-based palliative care Tele-consult programs developed by and for the rural southern AA and W populations it serves. This study will move the field forward by testing a promising culturally-based Tele-consult intervention that is scalable, and serves as a model for future culturally-based PC programs.
Despite the significant growth of palliative care programs nationwide, access to and dissemination of palliative care to the nearly 60 million US citizens who live in rural or non-metropolitan areas is grossly inadequate. Although culture fundamentally shapes how individuals make meaning out of illness, suffering, and dying, and strongly influences people's response to diagnosis and illness and their treatment preferences, culturally- appropriate models of care for seriously-ill rural patients and their family caregivers are not currently available in the US. We are studying whether, compared with usual care, a culturally- based, telehealth palliative care consultation and follow up lowers symptom burden and improves patient and caregiver quality of life, care satisfaction, and lowers caregiver burden and resource use in hospitalized African American and White rural elders with a life-limiting illness, and their caregivers.
