Considerations in Caring for Native American People at End of Life; The Northern Arizona Healthcare Navajo Video Project Bridget B. Stiegler, D.O. Palliative Medicine, Northern Arizona Healthcare Flagstaff Medical Center, Flagstaff Arizona Board Certified Internal Medicine, Palliative Medicine, Hospice
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Considerations in Caring for Native
American People at End of Life; The Northern Arizona Healthcare Navajo
• Native American/Alaskan Indian Healthcare Disparities
• Native American Tribes in Arizona
• Core Concepts of Traditional Indian Medicine
• Regional/Tribal Considerations: Dine’ • Western : Traditional Interface
• Acknowledging the Cultural Gap
• Bridging the Gap: Video technology
• Northern Arizona Healthcare Navajo Video Project
Culture
• “A group’s learned, repetitive, characteristic way of behaving, feeling, thinking and being. A strong determinant in attitudes towards health, illness, dying.”
• Learned: Through observation, written and verbal story telling, direct teaching… “This is our way”
• Repetitive: Recognized patterns over time, subconscious development of habits
• Characteristic: Defines and identifies…without which one is an outlier
• Attitudes: Dynamic, room for flexibility/variation/growth
Native American Healthcare Disparities
• Healthcare Equity • Distribution of services to a population
• Historic and Ongoing Disparities Among Native Peoples • 500 years since time of first contact
• Broad disparities health status and services • Broad spectrum disease categories
• All ages
• Limited Understanding • Lack of adequate data
• Populations are isolated, diverse, culturally distinct
• 567 federally recognized tribes
• Many non-recognized tribes
Native American Healthcare Disparities
• Indian Health Services (IHS) • Established 1972
• US Department of Health and Human Services
• Gov’t agency provides assistance to fed. recognized tribes
• Funds 33 urban health organizations
• Establishment of IHS
• Ability to better study Native American populations
Native American Healthcare Disparities
• Native American Indians • Leading cause of death
Western Medicine : Interface : Traditional Medicine
• Surrogacy • May not recognize AZ State Surrogacy Law
• Navajo Nation: decision making priority falls to birth family, not spouse. Even a spouse of 20+ years will defer to patient’s birth family for end of life decisions.
• “Cousinbrothers”, “Auntmothers”, adopted children
• Family Representative, Family Spokesperson
• Story Telling • Do NOT value efficiency
• Very offended by being “rushed”
• Time orientation through story telling
• Assert time boundaries; “We have one hour”
Western Medicine : Interface : Traditional Medicine
• Planning • “We will have two meetings”
• “We may have difficult decisions to make. We will not make decisions today, but we will discuss them and then come back together”
• Anticipate the need for family to return to reservation for ceremony/conference with elders
• Inclusion of/Collaboration with Traditional Healers • Invite, welcome early
• Problem: Family will wait until “Western” doctors have exhausted all options, and then ask to include medicine man when concern exists for futility of care.
• Foster resentment
Acknowledging the Gap
Acknowledging the Gap
• Helpful to openly acknowledge differences
• “I may say this in the wrong way, forgive me if I use the wrong words…”
• Language, awareness, receptivity, understanding
• How do we take this a step further?
• Are there actual tools we can utilize?
• Acknowledging the Gap > Bridging the Gap Navajo Bridge, Marble Canyon
Bridging the Gap: Navajo Video Project
• Subcommittee Goal: To provide accurate, balanced information to our Navajo patients to promote understanding and shared decision making. • Committed to the development of tools to address and overcome
language and cultural barriers complicating communication with our Navajo patient population.
• Studies have shown improved patient understanding and decision making using videos (5, 6, 7, 8).
• Maximize effectiveness and efficiency by utilizing technology platforms to engage and inform patients.
Bridging the Gap: Navajo Video Project
• Navajo patient population - first focus for our intercultural videos addressing end of life topics • 35% inpatient consultation volume
• Significant cultural and spiritual taboos limiting willingness to participate in goals of care and end of life discussions
• Frequent difficulty in completing advance directives
• Language barrier
• Social structure limiting clear ID of surrogate decision makers
• Video Development Team • Topics most frequently discussed during Palliative Care consultations
• What is Palliative Care
• Understanding Code Status and CPR
• Understanding Advance Directives
• Understanding Tracheostomy and Percutaneous Endoscopic Gastrostomy (PEG) Tubes
• Original scripts written by the Palliative Care practitioners, revised/edited by the interdisciplinary team members, NAH media staff and research director
• Submitted to a select group of English/Navajo bilingual clinicians and non-clinicians for cultural sensitivity
Bridging the Gap: Navajo Video Project
• Translated into Navajo by certified Navajo interpreters and cultural liasons
• Story board production, filming, editing and final production overseen by NAH Communications and Media team
• Each video is recorded in both English and in Navajo, as many multigenerational Navajo families speak English, Navajo, or both
• Video productions fees paid for from the Palliative Care Foundation fund, made up of patient and family contributions, as well as Palliative Care team fundraising and awards. Two tablets with speakers to provide families for viewing.
Navajo Video Team: Dr. Emmalee Kennedy, Dr. Bridget Stiegler, Shawn Boker RN, Sally Bond RN, Geri Kinsel-Begay, Certified Interpreter, Sean Openshaw, Media Services. Not pictured: Cynthia Beckett PhD, Research Director, Jennifer Guerrero RN
• 1. Braun, K.L. et al. 2014. “Research on Indigenous Elders: From Positivistic to Decolonizing Methodologies.”The Gerontologist 54 (1): 117-26.
• 2. Hendrix, L.R.2001. “Health and Health Care of American Indians and Alaska Native Elders.” Stanford, CA: Stanford Geriatric Education Center. Revised July 1, 2014.
• 3. Indian Health Service. 2014. Indian Health Disparities.
• 4. Office of Minority Health. 2014. American Indian/Alaskan Native Profile.
• 5. Volandes AE, Paasche-Orlow MK, Mitchell SL, et al. Randomized controlled trial of a video decision support tool for cardiopulmonary resuscitation decision making in advanced cancer. J Clin Oncol. 2013;31:380-6.
• 6. Wilson ME, Krupa A, Hinds RF, et al. A video to improve patient and surrogate understanding of cardiopulmonary resuscitation choices in the ICU: a randomized controlled trial. Crit Care Med. 2015;43:621-9.
• 7. El-Jawahri A, Paasche-Orlow MK, Matlock D, et al. Randomized, controlled trialof an advance care planning video decision support tool for patients with advanced heart failure. Circulation. 2016;134:52-60.
• 8. Mirarchi FL, Cooney TE, Venkat A, et al. TRIAD VIII: Nationwide Multicenter Evaluation to Determine Whether Patient Video Testimonials Can Safely Help Ensure Appropriate Critical Versus End-of-Life Care. J Patient Saf. 2017 Feb 14 [Epub ahead of print] PubMed PMID: 28198722.