Cultural Considerations in Palliative and End of Life Care

							Cultural Considerations in
Palliative and End of Life
           Care
  Lori Hedges, MS, APRN,BC-PCM
 Advocate Illinois Masonic Medical
               Center
            Culture Defined
   A system of shared symbols
   Provides security, integrity,
    belonging
   Constantly evolving
Palliative Care & Cultural Context


•   Making meaning of illness
•   Not limited to races or ethnicity
•   Increasing U.S. diversity
•   Health disparities
                                                      Cook
Quick Facts                             USA           County
Population                              284,796,887    5,350,269

Persons Under 18                               25.7          26

Persons 65 and over                            12.4         11.7

Females                                        50.9         51.6

White                                          75.1         56.3

Black or African American                      12.3         26.1

Asian                                           3.6          4.8

Hispanic or Latino                             12.5         19.9

Foreign Born                                   11.1         19.8
Language other than English spoken at
home                                           17.9         30.8

High School Graduates                          80.4         77.7

Bachelor's degree or higher                    24.4          28

Below poverty level                            12.4         13.5
     Cultural Competence


• Components
• Importance of interdisciplinary
  approach
     Cultural Assessment


• Cultural attributes
• Variation within groups
A Mother's Touch
Components within Culture

•   Ethnicity
•   Race
•   Gender
•   Age
•   Religion and spiritually
•   Sexual orientation
Fathers Watch
Components within Culture (cont.)

 •   Differing abilities
 •   Financial status
 •   Place of residency
 •   Employment
 •   Education level
 •   Cause of death
    Components of Cultural
        Assessment
• Patient/family/community
  – Birthplace
  – Ethnic identity, community
  – Decision making
  – Language and communication
      Components of Cultural
       Assessment (cont.)

•   Religion
•   Food preferences/prohibitions
•   Economic situation
•   Health beliefs regarding death, grief,
    pain
 Self Assessment of Culture


• Self assessment
• Cultural beliefs of co-workers
                Self reflection
   1. How do you identify yourself racially,
    ethnically, and culturally?
   2. When were you first aware of your own
    culture?
   3. What is the first memory you have of
    someone dying in your family?
   4. What were the rituals, practices or behaviors
    that your family observed at that time?
   5. What aspects of your cultural background do
    you feel strengthen your caring for dying patients
    and their families?
    Cultural Considerations of
         Communication
•   Use of interpreters
•   Conversation style
•   Personal space
•   Eye contact
    Cultural Considerations of
     Communication (cont.)
•   Touch
•   Time orientation
•   View of healthcare professionals
•   Learning styles
       Role of the Family


• Who makes decisions?
• Who is included in discussions?
• Is full disclosure acceptable?
        Cultural Influences on
          Decision-Making

   Beliefs about autonomy and
    beneficence differ
   Disclosure of diagnosis and
    prognosis
Language Use at the End of Life

• "Discontinuation"
• "DNR"
• "Withdrawing/withholding"
   When Cultures Clash


• Clashes occur
• Suggestions
     Hispanic/Latino

•Stoicism highly regarded
•Extended family
•Religion is important
•Belief in afterlife
•Rituals following death
   African American

•Trust may be an issue
•Fear of addiction
•Use of home remedies
•Elders held in high regard
•Hospital death may be preferred
•Belief in afterlife
              Conclusion

•   Many dimensions of culture
•   Major influence on end-of-life care
•   Self-assessment of culture
•   Interdisciplinary care facilitates
•   Culturally sensitive care
            Lost In Translation
   “Do not enter the lift backwards, & only when lit
    up.” (Seen on an elevator in Germany)
   “Drop your trousers here for best results.” (Seen
    in a Bangkok dry cleaner’s)
   “We are pleased to announce that the manager
    has personally passed all the water served here.”
    (In an Acapulco hotel)
   “You are invited to take advantage of the women
    who are employed to clean the rooms.” (In a
    Japanese hotel)
                 Case Study 1
   Mr. Li is a 65-year-old Chinese-American man,
    diagnosed one year ago with lung cancer. The
    patient has been told he has a “lung disease.”
    Despite the fact that his disease is clearly
    advancing, the family insists that he not be told
    of his diagnosis or prognosis. Mr. Li is losing
    weight (20 lbs in the previous two months) and is
    having increasing back pain and difficulty
    swallowing. He lives with his wife in a second
    floor apartment. His two sons are both married
    and live in the area. He denies any religious
    affiliation. The health care team is increasingly
    frustrated with the fact that Mr. Li is not able to
    fully participate in decisions about his care and is
    considering an ethics consultation.
                 Case Study 1
   Discussion Questions:


   What are your impressions regarding this
    scenario? Is it legal to not inform the patient of
    his diagnosis?
   How might the team approach Mr. Li regarding
    issues of diagnosis and prognosis?
   Describe ways in which issues related to patient
    self-determination and informed consent can be
    approached that respect patient and family
    values
                Case Study 1
   While performing a thorough physical assessment
    during a recent clinic visit, the nurse observes
    round bruises over several areas of the patient’s
    back. As Mr. Li’s disease progresses, he becomes
    more weak and unable to move from bed. When
    asked how he is feeling, he always whispers
    “fine” and denies any symptoms. His wife, Mrs.
    Li, is tearful that her husband’s appetite is
    diminished. She believes he will be cured if only
    he will eat and that he must try harder. The
    nurse observes the patient having difficulty
    swallowing, potentially aspirating, when given
    soft food, and explains this to Mrs. Li, who
    appears unable to understand.
                 Case Study 1
   During a home visit by the home care nurse and
    social worker, the sons also are present. Mr. Li is
    minimally conscious, febrile, tachycardic, and
    diaphoretic. The oldest son tries to encourage Mr.
    Li to eat. He refuses to listen to the hospice nurse
    about the possible outcome of feeding his father
    and the gravity of his father’s condition. He
    angrily states that his father is going to get
    better and requests antibiotics for the fever. The
    youngest son, speaking privately to the nurse,
    understands that his father is dying. When the
    nurse speaks about preparations for Mr. Li’s
    death, the wife and oldest son are unable to
    participate in the conversation. The next day,
    the family admits Mr. Li to the hospital, where he
    dies within 24 hours.
                   Case Study 1
   Discussion Questions:
   What are essential components of cultural assessment for
    this family?
   What aspects of Chinese-American culture are displayed in
    this scenario?
   How should the nurse respond to the patients use of
    moxibustion?
   (Note: Moxibustion is a form of traditional Chinese
    medicine in which a cup is placed over the skin and the top
    of the cup is heated. This often produces a round burn-like
    bruise. It is believed to relieve toxins. It is occasionally
    misunderstood by healthcare professionals as a sign of
    physical abuse. These may also be Mongolian spots, which
    are discolorations of the skin that look like bruises.)
   What could an interdisciplinary team have done to
    improve care at the end of life?
                Case Study 2
   Ms. Thomas is a 54-year-old African-American
    widow, mother and grandmother who lived with
    her daughter and 4 grandchildren in a 4-floor
    walk up apartment. She is an active member of
    her church community, and friends commented
    that she had so much energy that she exhausted
    all of them just being around her. At age 51, she
    was diagnosed with non-Hodgkin’s lymphoma.
    Busy with raising her grandchildren, 4 months
    went by before she sought attention for her
    symptoms and was diagnosed. Despite
    aggressive treatments with chemotherapy and
    radiation, her disease progressed, and she was
    considering undergoing a bone marrow transplant
    (BMT).
              Case Study 2
   Climbing the stairs to the apartment one
    afternoon, she became very short of
    breath and collapsed. Her ten year-old
    granddaughter called 9-1-1. At the
    hospital, she was minimally responsive
    and in severe respiratory distress. She
    was intubated and transferred to the ICU.
    A family meeting with the oncology and
    ICU team was called to discuss Mrs.
    Thomas’s advanced condition, the fact
    that she would probably not survive a
    BMT, and to decide on goals of care.
               Case Study 2
   Fifteen family members arrived, including
    her daughter, pre-teen granddaughter and
    grandson, 3 nieces, 4 nephews, several
    friends from her church and the minister.
    On being asked that only the immediate
    family participate in the meeting, the
    family and friends became angry, and
    insisted that all of them be involved in this
    discussion.
                 Case Study 2
   Discussion Questions:

   1. Detail the physical, psychological/emotional,
    social and spiritual aspects of the case.
   2. Discuss ways that a team might anticipate
    possible concerns that may arise during the
    course
       of an illness? How would you go about
    assessment and reassessment of key areas?
   3. Discuss what kind of assessments and
    attention to continuity of care might improve
       communication in this case.
   4. What are other concerns you have with this
    case and what will happen next?