Advancing Palliative Care in Northern Plains American Indians

The quality of cancer care in the rural United States (US) is inadequate. The Northern Plains is one of the most rural areas of the US, including three states with the highest proportion of rural residents in the 2010 census (South Dakota, North Dakota and Montana). In the Northern Plains, the burden of cancer is not distributed equally with substantially higher cancer mortality among American Indians (AI) than Whites. Annual cancer death rates in this region are 338 per 100,000 for American Indians, compared to 223 for Whites. One of the greatest areas of need in cancer care for AIs in the Northern Plains is palliative care. Defined as the services needed to live well with serious illness, access to palliative care by this population is almost non-existent, particularly in areas like western South Dakota where many tribal lands are located. Because of distance to the nearest cancer care facility, inadequate transportation, and lack of community- based palliative care support, most AIs with cancer living on tribal lands are separated from their families during inpatient cancer care and die either alone in a hospital or at home suffering unnecessarily from symptoms such as pain and anxiety. This situation is particularly unacceptable given the the US governmental responsibility for tribal health care, the adverse socioeconomic conditions experienced by the tribes, and the importance the tribes place on spiritual preparation and community support at the end of life. This proposal arises from a collaboration of 8 programs dedicated to improving cancer care among AIs in Western South Dakota: the Walking Forward program of Avera Health, the Oglala, Sicangu and Cheyenne River Lakota tribes, the Great Plains Tribal Chairmen's Health Board, the School of Nursing at South Dakota State University, the Indian Health Service Great Plains Region, and the Rural Health and Palliative Care programs at Massachusetts General Hospital (MGH). These groups have come together to propose a two- phase study that will lead to a sustainable, culturally tailored, and effective palliative care program for AI cancer patients in Western South Dakota. In Phase 1, we will build upon formative work understanding palliative care needs, barriers and opportunities in American Indians in this area, palliative care educational programs developed at MGH/Harvard, and innovations in care delivery and patient engagement ongoing at MGH and elsewhere to create a culturally appropriate intervention for this population, focusing on two key components prioritized by stakeholders: (1) multidisciplinary provider education and (2) in-home support and care coordination through a palliative care focused community health worker program. In Phase 2, we will evaluate these components using an innovative quasi-experimental, factorial design, examining the combined and independent impact of the interventions on patient and caregiver outcomes, as well as provider knowledge and comfort. All phases of the project will be guided by a community advisory board composed of tribal health leaders and representative enrolled members from the three tribes.