End-of-life Decision-Making and the Role of the Nephrology Nurse

1
End-of-life Decision-Making and the Role of the
Nephrology Nurse

• Module 3
• Cultural Diversity
• Different Cultures,Different Solutions

2
Introduction

• This module is the third in a series to help
  nurses understand the cultural influences that
  they can have on end-life-care.
• First module Advanced Care Planning
• Second module Ethical/Legal Issues in
  End-of-Life Care

3
Objectives

• Define terms pertinent to the discussion of
  cultural influences on end of life care.
• Examine one's own cultural profile and this
  profiles influence on attitudes about
  end-of-life care.
• Describe the cultural make up of your current
  work environment (including staff and patients)
  and how it impacts the care provided.

4
Objectives

• Identify communication skills to enhance
  culturally sensitive interactions between care
  givers, patients, and families.
• Identify cultural responses to illness, death,
  and grief.

5
Concepts Helpful in Understanding Cultural
Influences

• Values
• Belief
• Culture
• Ethnicity

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Values

• Values are defined as principles and standards
  that have meaning and worth to an individual,
  family, group, or community.
• What are some values that you have as an
  individual? That you share with a group?
• Examples may include honesty, truthfulness,
  faithfulness.
• Purnell and Paulanka-Transcultural Health Care,
  2003

7
Belief

• Something that is accepted as true
• Examples
• Spiritual beliefs
• The world is round
• Purnell and Paulanka

8
Culture

• The totality of socially transmitted behavioral
  patterns, arts, beliefs, values, customs, life
  waysand all products of human work and
  thought. characteristic of a population of
  people that guide their world view and decision
  making.
• Purnell and Paulanka

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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

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Cultural Competence

• A set of attitudes, skills, behaviors and
• policies enabling individuals to establish
• interpersonal and working relationships that
• supersede cultural differences
• Price 2005

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Cultural Competence is.

• a Continual Process of
• learning
• change
• and
• growth.

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Your Own Cultural Self-Assessment

• Important to have an understanding of your own
  culture its beliefs and values.
• Aspects of your culture may influence how you
  react to others and how others react to you.
• Take a few minutes to do assessment
• Also, consider culture of your workplace when
  completing the assessment

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Key Elements of Self Assessment

• Be aware of your own culture and how it
  influences your approach to others
• Be open.Be humble
• Be honest with yourself
• Be real in the use of respect and concern

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Cultural Self-Assessment Tool

1. Where was I born?
2. What is my ethnic affiliation and how strong is
   my ethnic identity?
3. What do I value?
4. How do I communicate with others?
5. What are my health and illness beliefs and
   practices?
6. Is religion an important source of comfort and
   support?
7. How do I define care?
8. Do others in my family share my thoughts and
   feelings about the above answers?

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Reflection on Self Assessment

• 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

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Diversity of U.S. Patient Populations

• Dialysis Patients 324,826 in U.S.
• White 179,953 55.4
• Black 120,835 37.2
• Native American 4,548 1.4
• Asian 13,643 4.2
• Hispanic 45,476 14.0
• USRDS 2005 Annual Report

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Profile of Patient Population

• Transplant Patients 128,131 in U.S.
• White 96,995 75.7
• Black 23,320 18.2
• Native American 1,281 1.0
• Asian 5,510 4.3
• Hispanic 14,351 11.2
• USRDS 2005 Annual Report

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What is the patient and staff cultural profile in
your work environment?

• 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
  end-of-life issues, illness, grief and death?
• What conflicts do/may occur between persons with
  different cultural expectations?

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Cultural Awareness/Cultural Sensitivity

• 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-CulturalInterview Questions

• 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?

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Questions Continued

• Is there anything that would be helpful for me
  to know about how you or your family views
  serious illness and treatment?
• What is worrying you most right now?
• How can I make you more comfortable?

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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 Allahs will grief
  counseling not well accepted

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Cultural Implications

• Jews - everything done to prolong life dying
  person not be left alone.
• Hindus - death generally accepted
  philosophically sacred threads
• Buddhists - Buddhist monk consulted for
  spiritual support shrine in room mindfulness
  important

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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 inEnd-of-Life Decisions

• The effect on the family
• The grieving process

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Family Perceptions onEnd-of-Life Care

• Family members recommendations
• Better communication (44)
• Greater access to physician time (17)
• Better pain management (10)
• JAGS 1997 Hanson, Danis and Garrett

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Family Perceptions onEnd-of-Life Care

• Largest study to date examining family
  perceptions of EOL care.
• Unmet needs
• Emotional Support (50)
• What to expect while patient dying (35)
• Symptom management, pain/dyspnea (24)
• Physician communication (24)
• JAMA January 7, 2004 Teno, et al

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What Do Patients/Families Want

• 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

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Cultural Implications in Grieving Process

• 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.

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Brief Review ofStages of Grief

• Remember grief is expressed whenever there is a
  loss

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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

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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

• Grief is a roller coaster
• Take the time to grieve
• Learn from past losses
• Do not need to struggle alone

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And Now What?

• Offering Comfort
• Rituals and Traditions
• Resources
• Hospice
• Bereavement Counseling
• Peer Support Groups
• Web sites such as Kidney EOL Coalition
  (www.kidneyeol.org)

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What About the Health Care Provider

• Resolving our grief
• Support
• Colleagues and peers
• Mentors/Friends/Community Leaders
• Employee Assistance Programs
• Prayer
• Community Resources
• The Culture Tool

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Key Learnings

• Everyone is unique and draws from their own past
  experiences
• Communication is key
• Much work still to be done

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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

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End of Life Prayer
When my life is finally measuredIn 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
peacefullyAnd help my family (and friends)To
understand. Anonymous prayer found at Hospice
House, Williamsburg, VA
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Resources

• 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.

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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.