End-of-life and palliative care can be problematic in communities that lack well-established networks or easily accessible health resources. Lee Ann Johnson shares a study that addresses health care disparities that can lead to unnecessary suffering in emerging Latino populations. Johnson is an assistant professor in the Acute & Specialty Care department in the School of Nursing at the University of Virginia.
Community-Based End-of-Life Care in Emerging Latino Populations
Latinos are the fastest-growing minority in the United States, yet Latino communities across the country continue to experience health care disparities. Disparities can be especially problematic for emerging Latino populations, where there are not well-established community networks or easily accessible health resources that are culturally and linguistically sensitive. For Latinos with advanced cancer, particularly those in emerging, rural Latino communities, disparities in palliative and end-of-life care can lead to unnecessary suffering for both the patient and the family.
Palliative care, sometimes called supportive care, is specialized care for those with a serious illness. It is meant to both alleviate symptoms associated with the disease and improve quality of life. Palliative care can begin when an individual is diagnosed with advanced cancer and is not the same as end-of-life care. End-of-life care is part of palliative care, but it is meant for individuals who are nearing the end of life. The goal is to ensure an individual is comfortable in the time they have left, provide emotional support, and help individuals and their families know what to expect as death approaches.
In rural Latino communities, several problems contribute to palliative and end-of-life care disparities. Palliative care specialists are often associated with larger hospital systems, and individuals may have to travel a considerable distance to access a specialist. Palliative care delivered by telehealth can be problematic in rural communities where there is not universal internet coverage and because not all families can afford the necessary electronic equipment. Even when geographically accessible, palliative care resources do not always provide culturally sensitive care or have bilingual staff. Hospice, what most people think of as end-of-life care, has limited coverage in rural areas. Additionally, rural hospices struggle to employ and retain nurses and staff due to the significant distances employees must travel between patients. Lastly, for undocumented individuals in Latino communities, lack of insurance or fear of deportation are substantial barriers to accessing high-quality palliative and end-of-life care.
As researchers and health care providers, we are tasked with developing innovative solutions to address disparities in palliative and hospice care. Every individual deserves a death with dignity. To address palliative and end-of-life care disparities in the emerging Latino population in rural eastern North Carolina, a team of researchers, clinicians, and community partners developed and pilot tested a community-based program. In the first phase of the study, leaders within the Latino community from three counties were asked to participate in a training program. The training schedule was developed based on participant feedback and was offered over two Saturdays at a location convenient to participants. One training was held in each county. The Latino community leaders received education about advance care planning, palliative care, and knowledge about how family members could help with symptom management at home. All leaders were bilingual and training materials were offered in both Spanish and English. The training prepared leaders to visit Latino individuals with advanced cancer and their families in their homes. One unique aspect of this intervention is that every leader was paired with a registered nurse who was available to answer questions during a home visit.
This initial phase of the study was successful. The team enrolled and retained 15 leaders from three counties. The study team demonstrated that leaders knew more about palliative care after training and increased their readiness to complete advance care planning documents. Although COVID-19 has drastically disrupted the second phase of the study where leaders complete home visits, the study team is devising new ways to connect leaders with community members with advanced cancer. In the future, we hope to scale up this novel solution to other emerging rural Latino communities to continue to improve access to palliative care knowledge and end-of-life care.
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