Exploring Palliative Care Communication with Alaska Native and American Indian People at Two Primary Care Sites

Southcentral Foundation

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Abstract

Project Summary Palliative care is an interdisciplinary field that aims to relieve emotional, spiritual and physical suffering and improve quality of life in patients with serious, life-limiting illness and their families. Unfortunately, palliative care is often introduced too late in the course of care to maximize its potential benefits, in part because healthcare providers lack skills to initiate conversations with patients about advance care planning (ACP). ACP is an important component of palliative care in which patients, families and providers discuss and plan for desired treatment goals, including patients' preferences for care and who can make decisions on their behalf. Integrating ACP into treatment early, before serious, life-limiting illness advances, can improve patient and caregiver quality of life, cost, and survival. Primary care is an ideal setting for early integration of ACP, as primary care providers routinely diagnose and care for patients with serious, life-limiting illnesses. Alaska Native and American Indian (AN/AI) people have disproportionately high prevalence of many serious, life-limiting illnesses such as cancer, coronary heart disease, and liver disease. Yet, AN/AIs use ACP and other palliative care services significantly less than the overall population. The reasons for this disparity are unclear, and AN/AIs are among the most underrepresented groups in palliative care studies. Previous research indicates that when given the opportunity, AIs will engage in ACP, and we found unanimous support among ANs for developing culturally congruent ACP interventions in primary care settings. The need for timely and effective ACP is growing in AN/AI communities and there is a pressing need for culturally-congruent, patient-centered palliative care interventions for AN/AIs as tribal health systems manage rising numbers of AN/AI individuals with serious, life-limiting illnesses. We propose a collaborative, clinical study to: 1) conduct focus groups with 40 key stakeholders (patients, caregivers, providers, administrators) in two tribal health systems to tailor an existing ACP communication intervention for AN/AIs with serious, life-limiting illness; 2) evaluate the cultural relevance and usability of the tailored ACP communication intervention among 20 AN/AI patients using cognitive interviews; and 3) compare the impact of the tailored intervention on frequency of ACP discussions, as well as quality of and satisfaction with ACP communication between 30 AN/AI patients receiving individualized information to prompt ACP discussions with providers and 30 AN/AI patients receiving usual care, with information to prompt a discussion. Implementing effective, appropriate ACP is a high priority for Southcentral Foundation (SCF) and First Nations Community HealthSource (FNCH), two tribal health systems serving large populations of AN/AIs with serious, life-limiting illness. The proposed study will develop and evaluate a culturally congruent, patient- centered ACP intervention at these sites and will set the stage for a large, multi-site clinical trial of the intervention that could improve patient and caregiver outcomes among 5 million AN/AI Americans.