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

• No financial or professional disclosures.

Agenda

• A Look at “Culture”

• 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

• Heart disease, Malignancy, Unintentional Injury, Diabetes

• Life Expectancy

• 4.4 years less than US all races population

• Die at higher rates than other Americans

• Chronic liver disease/cirrhosis, DM2, unintentional Injury, assault/homicide, intentional harm/suicide, lower resp. diseases

• Reasons proposed to explain inequities

• Poverty, lack of access to education, poor healthcare literacy, mainstream marginalization, diet……

What do we do about it?

• Disparities in status, services for > 500 years

• Connecting, aligning seems daunting task…

• Rather than trying to teach/enforce our mainstream culture, we try to learn/understand marginalized, isolated, native culture

Native American Tribes In Arizona

Native American Tribes in Arizona

AI and AN Population by State

Native American Tribes in Arizona

• 21 Indian tribes and nations are located on 26% of Arizona land, comprising nearly 1/8 of all American Indians in the United States.

Native American Tribes in Arizona

• Ak-Chin Indian Community

• Camp Verde Yavapai-Apache Tribe

• Cocopah Tribe

• Colorado River Indian Tribes (CRIT)

• Fort McDowell Mohave-Apache Indian Community

• Fort Mojave Indian Tribe

• Fort Yuma-Quechan Tribe

• Gila River Indian Community

• Havasupai Tribe

• Hopi Tribe

• Hualapai Tribe

• Kaibab Paiute Tribe

• Navajo Nation

• Pascua Yaqui Tribe

• Salt River Pima-Maricopa Indian Community

• San Carlos Apache Tribe

• San Juan Southern Paiute

• Tohono O’odham Nation

• Tonto Apache Tribe

• White Mountain Apache Tribe

• Yavapai-Prescott Indian Tribe

Inter-Tribal Council of Arizona (ITCA)

• ITCA Non-Profit Organization • 2214 N. Central Ave, Phoenix AZ 85004

• Elected representatives of each tribe

• Health, Environment, Learning, Culture, Community

• Tribal Affairs • Tribal relations

• Organizational relations

• Government relations

• Cultural relations

An Approach to Understanding Culture

• How should we focus our attention?

• Core Concepts of Traditional Indian Medicine

• Respectful Generalizations

• Geographic/Regional (Tribal) Considerations

Core Concepts of Traditional Indian Medicine

Core Concepts of Traditional Indian Medicine

• Belief in a Supreme Creator • Creator vs. “God”

• Interact with Creator through Nature; animals, seasons

• Spirituality

• Traditional vs. Western Influence (Christian, LDS) – groups that had missionary presence in early America

• Mind <> Body <> Spirit • Illness affects mind and spirit, not just body

• Family may not trust person with the disease to make decisions

• Illness is a spiritual sickness (wrongdoing)

Core Concepts of Traditional Indian Medicine

• Spirit exists before and after death • There is room for crossover/interaction – this is not always

desired!

• Wellness = Harmony/Balance, Sickness = Disharmony

• Family members may hesitate to disagree or voice opinions as disharmony can make sickness worse (Hopi).

• Paternalism???

• Personal Responsibility for Health • Blame

Core Concepts of Traditional

Indian Medicine: Circle of Life

• # Four permeates philosophy: • 4 directions • 4 seasons • 4 colors • 4 clans • 4 sacred mountains

Core Concepts of Traditional Indian Medicine: Medicine Wheel

Geographic/Regional Considerations

Navajo

-300,460 tribe members 2015 – Dine’

-Utah, AZ, New Mexico: Navajo Nation

-County seat is Holbrook

-Navajo land outlined by four sacred mountains; Mt. Blanca {E}, Mt. Taylor {S}, San Francisco Peak {W}, Mt. Hesperus {N}

Navajo

• Hogan – roof is likeness of the sky, walls likeness of mountains, floor is “Ever in touch with the earth mother”.

• Sacred dwelling; shelter, protection, refuge. Blessed by medicine man prior to moving in. Enter always clockwise.

• Without running water, central heating/cooling. Winter census!

Navajo

• WWII Code Talkers

Navajo

-Passed through 3 different worlds before emerging on this 4th world, “Glittering World”. Two classes of people, Earth People and Holy People.

-Holy People have power to aid or harm Earth People.

-Purpose; Maintain harmony on Mother Earth.

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

• Brave Committee • Palliative Care MDs, RNs, research/media experts, certified

Navajo interpreters

Bridging the Gap: Navajo Video Project

• 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

• httpnahealth-1.wistia.com/medias/sowwqu1fl4s://

• https://nahealth-1.wistia.com/medias/65r3cxab4k

• Thank you!

• Bridget.Stiegler@nahealth.com

References

• 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.