IA2 Testifies before IOM on End of Life Care in Indian Country

Feb. 20, 2013

Bill Benson, President of the International Association for Indigenous Aging (IA2), spoke today before the Institute of Medicine Committee on Transforming End-of-Life Care. His testimony focused on end-of-life care in Indian Country.

Benson reported on an IA2 report, which examined four American Indian end-of-life programs that are demonstrating extraordinary success, measured in part by rates of patient/family compliance with advance directives and patient satisfaction surveys. Surprisingly, this effort revealed strong evidence that long-standing perceptions of cultural/racial barriers are not accurate. Existing paradigms of culturally-appropriate EOL care may no longer apply. In these four programs, provider empathy emerges as perhaps the foremost critical factor in the acceptability of end-of-life discussions.

“Both researchers and public perception have long assumed that some minority populations are averse to talking about end-of-life issues; and that in particular, traditional Indian beliefs preclude these discussions. Yet one IHS medical and social work team – working in Ft. Defiance, Ariz., over a period of ten years in the heart of the Navajo reservation, one of the most traditional of Indian tribes – produced a 90 percent success rate with durable medical powers of attorney and other advance directives – far above national rates of less than 30 percent. As a result, the program director – a non-Native – was invited to become an honorary member of the Navajo Medicine Man’s Association – a previously unimaginable honor,” Benson stated.

At the University of New Mexico Hospitals, similar rates of measurable success are occurring in a patient population that is 40% Hispanic, 40% white, and 10% American Indian. UNMH sees the highest percentage of AI/AN patients among total admissions of any academic hospital in the country. In urban Albuquerque, Native patients may come from any of dozens of different tribes. Following consultation with the EOL program, Native patients’ preference for putting a DNR order in place increased from 22 percent to 62 percent, and family end-of-life meetings increased by an even greater rate, from 30 percent to 76 percent. Clearly, the program is having a significant effect.

‘Empathy trumps culture’

As the UNM program director said to IA2, “Most of our patients come to us already in crisis, so we try to create an immediate Plan of Care,” which evolves from their issues, and those of their families. She believes, “The secret is to come in with no preconceived assumptions, and to let the patients and their families take the lead. Most of our patients are in such emotional pain that they appreciate ANYONE who will listen and who cares about them. In short, empathy trumps culture.” We really like that point, “Empathy trumps culture.”

Similar results are occurring at the Zuni Pueblo in New Mexico and Cherokee Nation in Oklahoma. Both are also featured in IA2’s report.

For more details, see the Feb. 20 press release in our “Press Releases” section, http://www.iasquared.org/pressreleases.html

To view IA2’s report, prepared for the Centers for Disease Control and Prevention’s Healthy Aging Program, “Moving Beyond Paradigm Paralysis: American Indian End-of-Life Care,” go to http://www.iasquared.org/products.html

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