Transcript Support for Family, Patients, and Caregivers: Before

End-of-life Decision-Making
and the Role of the
Nephrology Nurse
Module 3
Cultural Diversity
Different Cultures,
Different Solutions
Introduction
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This module is the third in a series to help
nurses understand the cultural influences
that they can have on end-life-care.
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First module: Advanced Care Planning
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Second module: Ethical/Legal Issues in
End-of-Life Care
Objectives
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Define terms pertinent to the discussion of
cultural influences on end of life care.
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Examine one's own cultural profile and this
profile’s influence on attitudes about end-oflife care.
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Describe the cultural make up of your current
work environment (including staff and
patients) and how it impacts the care provided.
Objectives
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Identify communication skills to enhance
culturally sensitive interactions between
care givers, patients, and families.
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Identify cultural responses to illness,
death, and grief.
Concepts Helpful in
Understanding Cultural Influences
Values
Belief
Culture
Ethnicity
Values
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Values are defined as principles and standards that
have meaning and worth to an individual, family,
group, or community.
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What are some values that you have as an
individual? That you share with a group?
 Examples may include honesty,
truthfulness, faithfulness.
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Purnell and Paulanka-Transcultural Health Care, 2003
Belief
Something that is accepted as true
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Examples:
 Spiritual beliefs
 The world is round
Purnell and Paulanka
Culture
The totality of socially transmitted
behavioral patterns, arts, beliefs,
values, customs, life ways……and
all products of human work and
thought……. characteristic of a
population of people that guide their
world view and decision making.
Purnell and Paulanka
Ethnicity
A way of socially grouping persons on the
basis of historical or territorial identity or by
shared cultural patterns.
Examples include Hispanic and African Americans. They can be from different
areas of the world, but still identify with their ethnic culture.
Crawley 2005
Cultural Competence
A set of attitudes, skills, behaviors and
policies enabling individuals to establish
interpersonal and working relationships that
supersede cultural differences
Price 2005
Cultural Competence is….
a Continual Process of
learning
change
and
growth.
Your Own Cultural Self-Assessment
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Important to have an understanding of your own
culture – its beliefs and values.
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Aspects of your culture may influence how you
react to others and how others react to you.
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Take a few minutes to do assessment
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Also, consider culture of your workplace when
completing the assessment
Key Elements of Self Assessment
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Be aware of your own culture and how it
influences your approach to others
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Be open….Be humble
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Be honest with yourself
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Be real in the use of respect and concern
Cultural Self-Assessment Tool
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Where was I born?
What is my ethnic affiliation and how strong is
my ethnic identity?
What do I value?
How do I communicate with others?
What are my health and illness beliefs and
practices?
Is religion an important source of comfort and
support?
How do I define care?
Do others in my family share my thoughts and
feelings about the above answers?
Reflection on Self Assessment
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Important to understand our own beliefs, values,
and culture
Remembering it is the care we provide and the
work we do, is not about “us” but about the care
we provide to our patients and the work we do
with our staff
“Sometimes you may not understand – but you
just have to accept”
Our patients need to know that we are with them
in providing the care and support they deserve
Diversity of U.S. Patient
Populations
Dialysis Patients: 324,826 in U.S.
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White
Black
Native American
Asian
Hispanic
USRDS 2005 Annual Report
179,953
120,835
4,548
13,643
45,476
55.4%
37.2%
1.4%
4.2%
14.0%
Profile of Patient Population
Transplant Patients: 128,131 in U.S.
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White
Black
Native American
Asian
Hispanic
USRDS 2005 Annual Report
96,995
23,320
1,281
5,510
14,351
75.7%
18.2%
1.0%
4.3%
11.2%
What is the patient and staff
cultural profile in your work
environment?
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How do these cultures approach end-of-life and
the grieving process?
How do aspects of these cultures impact your
care for patients, especially discussions on endof-life issues, illness, grief and death?
What conflicts do/may occur between persons
with different cultural expectations?
Cultural Awareness/
Cultural Sensitivity
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Social Class/Economic Status
Sexual Orientation
Areas of common cultural differences:
conversational style
 eye contact
 personal space
 touch
 time orientation
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Cross-Cultural
Interview Questions
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“Some people want to know everything about
their medical condition, others do not. What
is your preference?”
“Do you prefer to make medical decisions
about your future tests or treatments yourself
or would you prefer that someone else make
them for you?”
Questions Continued
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“Is there anything that would be helpful
for me to know about how you or your
family views serious illness and
treatment?”
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“What is worrying you most right now?”
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“How can I make you more comfortable?”
Examples of Cultural
Influence
Religious Beliefs
Jehovah Witnesses - no blood transfusions
 Christian Scientists - spiritual healing, not
medical intervention
 Muslims - may choose to face Mecca;
discussion about death not usually welcome;
stopping medical treatment is against
Allah’s will; grief counseling not well
accepted
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Cultural Implications
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Jews - everything done to prolong life;
dying person not be left alone.
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Hindus - death generally accepted
philosophically; sacred threads
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Buddhists - Buddhist monk consulted
for spiritual support; shrine in room;
“mindfulness” important
Cultural Implications
Hispanic/Latino
The family makes decisions and shares in
care
 Wailing is acceptable and expected
 Fear of soul being “lost” in hospital, prefer
to die at home
 Prayer and folk remedies are common,
along with religious medals, rosaries
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Cultural Implications
African-American
Communication with the oldest family
member
 Open displays of emotion should be
expected
 Strong sense of family, care for dying
person at home
 Distrust of the system
 Home remedies used
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Cultural Implications
Native American
Number of different tribes, various beliefs
 Fearful of expressing their religious beliefs
 Family meetings may be helpful
 Avoid eye contact and maintain a respectful
distance
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Cultural Implications
Chinese American
Families often will not tell the patient their
diagnosis of terminal illness or imminent
death
 Dying at home may be considered bad luck
 Often avoid eye contact and may not
disclose information that may be private
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Cultural Implications
Filipino American
Communication with head of the family,
away from patient
 After discussion, may agree in order to be
polite and not offend
 Patients may prefer to die at home
 Religious objects and prayer used
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Cultural Awareness in
End-of-Life Decisions
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The effect on the family
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The grieving process
Family Perceptions on
End-of-Life Care
Family members recommendations:
 Better communication (44%)
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Greater access to physician time (17%)
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Better pain management (10%)
JAGS 1997 Hanson, Danis and Garrett
Family Perceptions on
End-of-Life Care
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Largest study to date examining family
perceptions of EOL care.
Unmet needs:
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Emotional Support (50%)
What to expect while patient dying (35%)
Symptom management, pain/dyspnea (24%)
Physician communication (24%)
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JAMA January 7, 2004 Teno, et al
What Do Patients/
Families Want
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Physician support of Family Caregivers
Timely and clear communication with patient
and caregivers
Support for home care
Information on services if home care is not an
option
Empathy-validate common feelings and
reassurance of high quality care
Cultural Implications in
Grieving Process
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Determined by complex interaction of
religious, philosophical and ethnic groups
How do your attitudes/beliefs affect your
delivery of care?
Think about how your own attitudes and
beliefs affect your delivery of care to patients
of a different culture.
Brief Review of
Stages of Grief
Remember grief is expressed
whenever there is a loss…
Stages of Grief
Stage 1: Notification and Shock
 Assess and recognize the loss.
 Helps in coping with the initial impact of the
loss
 Feelings of numbness, denial, isolation,
avoidance, difficulty with decision making.
 Feelings should decrease and subside as
survivor moves to the next stage
Stages of Grief - Continued
Stage 2: Experience the loss
emotionally and cognitively
Process of working through the pain by
reacting to, expressing and experiencing the
pain of separation/grief.
 Confrontation, anger, bargaining, depression
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Stages of Grief - Continued
Stage 3: Reintegration
Reorganize and restructure family systems
and relationships, forming new identity after
each loss
 Survivor may begin to find hope in the
future, feel more energetic, participate in
social events, acceptance.
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Effects of Grief
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Grief is a roller coaster
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Take the time to grieve
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Learn from past losses
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Do not need to struggle alone
And Now What?
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Offering Comfort
Rituals and Traditions
Resources
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Hospice
Bereavement Counseling
Peer Support Groups
Web sites such as Kidney EOL
Coalition (www.kidneyeol.org)
What About the
Health Care Provider
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Resolving our grief
Support
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Colleagues and peers
Mentors/Friends/Community Leaders
Employee Assistance Programs
Prayer
Community Resources
“The Culture Tool”
Key Learnings
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Everyone is unique and draws
from their own past experiences
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Communication is key
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Much work still to be done
Closing thoughts..
As a culturally competent
professional, I am capable of
interacting with people who do
NOT live like, look like, talk like,
think like, believe like, act like
....me.
National Center for Cultural Competence
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Closing thoughts…
At the end of life, an individualized
approach to care with a focus on
quality is paramount for any
patient, regardless of racial, ethnic
or cultural background.
Crawley 2005
End of Life Prayer
When my life is finally measured
In months, weeks, days, hours,
I want to live free of pain,
Free of indignity,
Free of fear,
Fear of loneliness.
Give me shelter.
Give me your hand.
Give me your care.
Give me your understanding.
Give me your love.
Then let me go peacefully
And help my family (and friends)
To understand.
Anonymous prayer found at Hospice House, Williamsburg, VA
Resources
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Kuczewski, M.G.(2006). Our cultures, our selves: toward an
honest dialogue on race and end-of life decisions. The
American Journal of Bioethics, 6(4), 13-17.
Lipson, J.G., Dibble, S.L., and Minarik, P.A.1996. Culture
&Nursing Care: A Pocket Guide. San Francisco: UCSF
Nursing Press.
Mazanec, P. and Tyler, M.K.(2003). Cultural considerations in
end-of-life care. American Journal of Nursing, 103(3), 50-58.
Searight, H.R., and Gafford, J.(2005). Cultural diversity at the
end-of-life: issues and guidelines for family physicians.
American Family Physician, 71(3), 515-522.
Zoucha, R.(2000). Keys to culturally sensitive care. American
Journal of Nursing, 100(2), 24GG-24II.
Additional Resources
ANNA Ethics Committee
Please contact us with questions or concerns through the ANNA Website
Additional Websites:
 National Resource Center on Diversity in End-of-Life Care:
committed to improving the provision of and access to quality
culturally appropriate care for all individuals with terminal
illnesses. http://www.nrcd.com/
 Trans-cultural Nursing: Basic Concepts and Case Studies: this
site offers information on treating patients and uses real-life
examples to illustrate key points.
http://www.culturediversity.org/mide.htm
 Harborview Medical Center http://ethnomed.org This site
offers a cultural profile of numerous African and Asian
cultures.