Phyllis R. Coolen, DNP, RN
PLFSOM 2nd Annual Cultural Competence Seminar
Texas Tech University, El Paso, Texas
April 12, 2013
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The Relevance of Cultural Competency in
End-of Life Care
Cultural Factors to Consider in End-of Life
Care
Cultural Assessment
Advance Directives
Pain Management
Case Studies
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United States moving towards a more ethnically and
culturally diverse country
 2040 white are expected to account 50% of
population
 Continued immigration Latin American and Asia
 “Minority Majority “in a number states and cities
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Challenge patient’s cultural norms different from
the healthcare provider’s own American norms and
culture values
 American core values emphasize autonomy and individual
rights to make life choices, especially healthcare and endof-life choices.
 The 1990 Federal Patient Self-Determination Act (PSDA)
ensures individual rights.
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2010 National Healthcare Disparities Report
 Disparities in palliative and end-of-life care for
ethnically diverse groups
▪ Less likely to receive right amount emotional support
▪ Less likely to receive end-of-life care consistent with their
wishes
▪ More likely to report poorer communication with their
physicians and nurses
▪ Had a greater misunderstanding about care options; less
knowledge about end-of-life care and advance directives
▪ Wenger et. al (2001) found that practitioners discussed
end-of-life care less with Blacks, Latinos, HIV via IV drug
users, those less educated, and the poor.
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:
 Nurse: “ I was having a difficult time understanding why this
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Asian family was making all the decisions and not allow the
patient to do anything for himself.”
Nurse: “It is difficult when the family does not want us to talk
about dying to the patient and even use the term “cancer “or
“dying”.
Social worker: “Often make assumptions about what the person
wants or says and we are so off the mark, because we don’t
know enough about the culture.”
Chaplain: “We aren’t intentionally giving bad care, we simply
lack the knowledge and training.”
Physician: “It is not easy to talk about end-of-life care or
advance directives, especially if we use an interpreter - not sure
if what I am telling the patient is actually being translated
correctly”.
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Death as a Taboo Subject
 Not acceptable to discuss
 Considered disrespectful, bad luck,
cause a loss of hope, despair
 Protecting the dying family member
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Collective Decision-making
 Norm in many cultures
 Family is the decision maker; Filial Piety
 Power of collectivism more important than individual
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Perception of the Physician’s Status
 Physician only one with authority
▪ Discussion is a sign of disrespect
▪ Asking questions means challenging authority
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Cultural influences on preference
of where to die
 Home = Samoans, Vietnamese,
Asian Indians, Koreans
 Hospital = Chinese
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Role of Religion and Faith
 Many ethnically diverse cultures, approach to
health and illness is through interconnection of
mind, body, spirit with nature or the environment.
 Faith and spirituality can play a significant role in
the perception and response to the dying process.
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Kleinman and Campbell’s Patient Explanatory
Assessment Model
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Giger-Davidhizar/Huff
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Kagawa-Singer & Blackhall’s ABCD Assessment
Model
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Coolen: http://ethnomed,org/clinical/end-oflife/cultural-relevance-in-end-of-life-care.
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Kleinman’s explanatory model uses 8 • What do you think has caused your
simple questions that clarify cultural
illness?
generalization and provide insight
• Why do you think your illness
into the patient’s personal meaning of
started when it did?
illness.
• What do you think your illness does
to you? How does it work?
• How severe is your illness/
• What kind of treatment do you think
you should receive?
• What are the most important results
you hope to receive from this
treatment?
• What is the main/biggest problem
(Campbell added 4 other questions to
your illness has caused you?
Kleinman’s relating to family’s
• What do you fear most about your
viewpoint.)
illness?
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Communication
What’s the usual pattern of
communication? Who’s the
spokesperson/decision maker? Terms used?
Space
Family closeness valued? Family defined
Time
Present, Past, Future Oriented?
Environmental Control
Locus of control?
Social Organization
Spiritual beliefs? Use of traditional medicine
Biological Variation
Usual responses to medication
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Attitude – About truth telling, positive or
negative attitudes about health care
Do you use any traditional healing
practices?
Beliefs – Religious/ Spiritual beliefs
How can we support your needs and
practices? Where do you find your strength
to make sense of what is happening to you?
Context –Historical, political, immigrant,
refugee, acculturation
• Where were you born and raised?
• How long have you been in the US? What
language are you most comfortable
using?
Decision-making style – who is major decision
maker, collectivism, filial piety
• How are decision about health care made
in your family?
• Is there anyone else I should talk to in
your family about your condition?
Environment – Available resources
• Identify community resources
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Document expressing person’s wishes concerning
certain life sustaining medical treatment when a person is
seriously ill or at the end of life, should the person not be
able to communicate his or her wishes.
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Differences in each state
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WA used only when life-sustaining treatment would
artificially prolong life in a terminal condition or when
individual is in an irreversible coma. Signed by two witness,
not be notarized. Texas – signed two witness/notarized.
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Five Wishes – legal advance document in 42 states.
Translated in 26 languages . Not legal form in Texas
https://fivewishesonling.agingwithdignnity.org.
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Durable Power of Attorney for Healthcare
 Legal document designating person to make medical
decisions when individual is incapacitated.
 WA -Not need to notarized or witnessed, advisable to
have lawyer prepare
 Texas – signed and notarized
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WA POLST – Physician’s Order for Life Sustaining
Treatment
 Not the same as an advance directive
 Specific Orders by the physician or ARNP indicates what
type of life sustaining treatment individual wants.
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Ethnic minorities have lower rates of a
completed advance directive
 Lack of knowledge
 Lack of understanding
 Distrust in the health care system and
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concern wishes won’t be carried out
Acculturation
Collectivism decision-making
Preference Physician to make decisions
Fear of death, death is a taboo subject
Influence of religion or spirituality
Key is in the planning process and developing
a trusting relationship with patient and family
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Private
Sufficient time
Who needs to be involved in the discussion
Interpreter – Understand the purpose of
“Aggressive treatment” - education
“Nothing can be done”
Use of community support – leaders, religious
or spiritual leaders
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Health disparities among ethnically
diverse groups and the poor receive
worse care
Disparities in Pain Management
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Less likely to receive pain medication or receive
lower doses even if patient has advanced
cancer
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Miscommunication and perception of pain needs
▪ Common theme across all ethnic groups (Im,
et.al)
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Chung et.al – Chinese and Japanese Americans’
cancer pain significantly under estimated by
nurses and physicians.
Anderson et. al – African American and Hispanic
patients’ pain severity significantly under
estimated by physicians despite having recurring
or advanced cancer.
Coolen et.al – many healthcare providers
associated minorities and low income patients
with drug seeking behavior/addiction = result is
under treatment of legitimate pain.
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Disparities in Pain Management
 Lack of access to care
 Lack of appropriate access to
analgesics and opioids
 Lack of access to pain specialist
 Language barriers
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Patient’s pain must be considered within the
context of the individual’s beliefs and values –
culture influences person’s perception and response
to pain
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Perception of pain and request for pain
 Culture affect person’s response to pain both in
meaning and expression of pain
 Create barriers
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Use of traditional practices
Coin Rubbing
Cupping
Herbal Remedies
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Assessment – Explanatory Model
(Kleinman)
 What do you call your pain? Why do you think
you have this pain?
 What cultural remedies have you tired to help
you with your pain?
 Have you seen a traditional healer for your
pain?
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http://www.wongbakerfaces.org/resouces. ©1983, Wong-Baker FACES ™.org. Used with permission.
McCaffery, M., & Beebe, A. (1993). Pain: Clinical Manual for Nursing Practice. Baltimore: V.V.
Mosby Company.
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Mr. S is a 53 year old Cambodian immigrant with incurable metastatic colon
cancer diagnosed 3 months ago. He has limited English proficiency. He is
admitted to impatient care for placement of a peritoneal drainage for
malignant ascites. The only pain medication ordered is Vicodan, 1-2 tablets
every 6 hours as needed. His wife speaks English well.
Night shift notes that patient did not ask for any pain medication.
Early am visit by the hospice nurse notes that patient is in severe pain –
moaning and groans with slight movement. Wife states he has had a bad
night and can anything be done to make him more comfortable.
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Sampeah Greeting
Cultural Assessment Performed
Pain Assessment Performed
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Mrs.V. is a 68 year old Filipino Hawaiian with
end-stage chronic obstructive pulmonary
disease. She is also an insulin dependent
diabetic. She lives with her son, daughter-in-law and four grandchildren. She
has gotten weaker and has fallen several times, tripping over rugs and stuff.
She also only likes to eat peanut butter and jelly sandwiches for breakfast
and lunch, despite nutritional counseling. She has been on hospice for a
month and staff are frustrated with her continued high risk of falling and
“noncompliance” with her diet.
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Every questions asked of client – client needed to “talk story”
Take time to listen to her stories to separate out her issues and concerns
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“Their surrounding should be as beautiful as possible; a
calm peaceful, serene, holy environment is so
important. There should be beautiful views, beautiful
art, flowers, images of deities and holy beings. The
point is to make a positive imprint on the person’s
mind. The person’s mind is elevated and they are not
afraid to die. “
Lama Zopa Rinpoche
Thank You
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Agency for Healthcare Research and Quality. (2011). 2010 National Healthcare Disparities Report. (11-0005).
Rockville, MD: AHRQ
Anderson, K., Mendoza, T., Valero, V., Richman, S., Russell, C., Hurley, J., . . . Cleeland, C. (2000). Minority cancer
patients and their providers pain management attitudes and practice. Cancer, 88(8), 1929-1938.
Coolen, P. Cultural Relevance in End-of-Life Care. Harborview Medical Center/University of Washington
Medicine EthnoMed Website: http://ethnomedorg. July 16, 2012.
Chung, S., Masaki, K., Somogyi-Zalud, E., Sumida, K., Wen, A., & Blanchette, P. (2009). Assessment of pain in
older Asian Americans with cancer. Hawaii Medical Journal, 68(9), 62-65.
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http://www.wongbakerfaces.org/resouces
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