Palliative Care Communication With Alaska Native and American Indian People

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 and patients alike lack the knowledge and self-efficacy to initiate conversations about advance care planning (ACP). ACP is an important component of palliative care in which patients, families and providers discuss and plan for the patient's desired treatment goals, including preferences for care and who can make decisions on the patient's behalf if needed. Integrating ACP into treatment early, before serious, life-limiting illness advances to a late stage, can improve patient and caregiver quality of life, length of survival, and health care cost. Primary care is an ideal setting for early integration of ACP, as primary care providers routinely diagnose and care for patients in the early stage of serious, life-limiting conditions, such as chronic obstructive pulmonary disease. Alaska Native and American Indian (AN/AI) people have disproportionately high prevalence of many serious, life-limiting conditions, including 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 our preliminary data suggest strong 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. The aims of this collaborative, community-engaged, clinical study are 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 at Southcentral Foundation (SCF) and First Nations Community HealthSource (FNCH), two tribal health systems serving large, diverse populations of AN/AI people in Alaska and New Mexico. This study will develop and evaluate a culturally congruent, patient- centered ACP intervention at these sites and produce evidence for a large, multi-site clinical trial of the intervention that could improve patient and caregiver outcomes in this diverse population of more than 5 million Americans.

Inclusion criteria

• Alaska Native and/or American Indian (patients)
• Age 18 or older (patients and providers)
• Employed at least 2 years as a primary care provider at one of the two study sites (providers)
• Have a primary care provider of record at one of the two study sites (patients)
• Have had at least 2 visits with primary care provider in previous 12 months (patients)
• Having at least one serious, life-limiting condition, including metastatic cancer, primary lung cancer, chronic obstructive pulmonary disorder, heart disease, liver disease or cirrhosis, renal failure, or being oxygen dependent. (patients)

Exclusion criteria

• Under age 18 (patients and providers)
• Not Alaska Native or American Indian (patients)
• Not having a primary care provider at one of the study sites (patients)
• Not being employed for at least two years as a primary care provider at one of the study sites (providers)
• Not having had at least 2 visits with a primary care providers at one of the study sites in the previous 12 months (patients)
• Not having a serious, life-limiting condition, such as metastatic cancer, primary lung cancer, chronic obstructive pulmonary disorder, heart disease, liver disease or cirrhosis, renal failure, or being oxygen dependent.