QI Report: Palliative Care Programs for American Indian/Alaska Native Communities Are Often Not Sustained
Key findings
- Clinicians at Massachusetts General Hospital are part of an interdisciplinary team of Native and non-Native nurses, researchers, physicians, and health leaders working to improve palliative care (PC) services at three reservations in South Dakota
- As a first step, they conducted a clinical quality improvement project in which they interviewed 12 clinicians from nine programs throughout the U.S. that offered PC services specifically to American Indian/Alaska Native (AI/AN) people
- Each program arose from a perception that the status quo for AI/AN patients experiencing serious illness was intolerable, and understanding of Native cultural values and the presence of Native staff was key to successful implementation of PC
- Only five of the nine programs were still operating at the time of the interviews; the strongest barrier to sustainability was the lack of administrative leadership support
- Developers of PC programs for AI/AN communities should focus on sustainability well before initial implementation
4.5 million people living in the U.S. identify as American Indians and Alaska Natives (AI/ANs) on the census. Home-based palliative care (PC) and hospice services are not commonly available for those who live on reservation land, as specialty PC providers are usually located hundreds of miles away.
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Clinicians at Massachusetts General Hospital are part of an interdisciplinary team of Native and non-Native nurses, researchers, physicians, and health leaders working to improve PC services at three reservations in western South Dakota. As a first step, they conducted a clinical quality improvement project in which they interviewed leaders from other organizations throughout the U.S. that had instituted PC services for AI/ANs.
Bethany-Rose Daubman, MD, co-director of the Global Palliative Care Program at Mass General and attending physician in the Division of Palliative Care and Geriatric Medicine, and colleagues report in the Journal of Palliative Medicine on key factors associated with successful program implementation and sustainability.
Methods
The researchers identified nine PC programs for AI/ANs. They developed semistructured interview questions using the Consolidated Framework for Implementation Research (CFIR), which is designed to help users evaluate factors that influence health services implementation. The team also used the CFIR to guide the coding and analysis of interview transcripts.
12 individuals were interviewed: seven physicians, three administrators, a social worker and a nurse practitioner. The entities involved were six tribally owned hospitals/organizations, three Indian Health Service hospitals, a nontribal PC agency, and an academic medical center (several programs used more than one entity).
Sustainability
Only five of the nine programs were still offering PC services at the time of the interviews.
Four CFIR constructs differed substantially between sustained programs and those that were not: Cost, Available Resources, and Relative Priority and Leadership Engagement, which are direct measures of administrative leadership support.
Facilitators and Barriers
Facilitators of PC implementation were:
- High tension for change because of needless patient and family suffering (a representative quotation from an interview was, "If an elder became sick, the Western medicine model was that they would be…taken to [the city] where they knew no one, and no familiar foods, nobody could visit, and they died quickly in a nursing home")
- The effort of administrator champions
- Using existing resources and programs
- Engaging the lay community (e.g., asking patients, family members, church members, and other community members about experiences with end-of-life care)
- Engaging the clinician community (demonstrating helpfulness to referring physicians, the emergency department, neurosurgery, and other hospital departments)
- Consideration of cultural values (e.g., understand some AI/AN peoples' belief in spirits and refrain from saying "die" or "dying" directly to a patient)
- Presence of Native staff, especially those who speak the language
Barriers to the sustainability of PC programs were:
- Shifting priorities among administrators
- Overdependence on champions
- Administrators concentrating on cost instead of cost savings
Commentary
Another interesting finding was that none of the organizations responsible for administering the PC programs was originally established to provide specialized PC. Understanding what causes administrative leadership to prioritize and support PC services is key to understanding how to sustain AI/AN-focused PC.
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