All Things are Related: A Path to Culturally

Competent Care

Tracy Schroepfer, PhD, MSWUniversity of Wisconsin-Madison

School of Social Work

All Things are Related…Self-PreparationPractice StrategiesAsking about Cultural Beliefs

in Palliative CareEthical & Boundary ChallengesDiversity in Preferences at EOL

Presentation Outline

All Things Are Related…

Circle of Care

Physiological (Body)

Social

Individual’s Well-Being

Cultural/Spiritual

Psychological(Mind)

Centered on insuring the individual’s comfort

through control of pain, and other physical

symptoms

Physiological

Centered on how illness and end-of-life affects an individual's feeling and

mood

Psychological

Centered on insuring the quality, not quantity, of an

individual’s social relationships and support at end-of-life

Social

Spirituality is how a person talks, listens and works

together with the Creator or Higher Power or God. It

is the meaning of life, prayer, individual beliefs

and to honor what is sacred

Spiritual

Our culture consists of shared values, traditions, norms, customs, teachings, arts, history, folklore, and institutions

Our culture and socialization influence our beliefs about, attitudes toward, and experience with end-of-

life

Cultural

Our Challenge

How do we as professionals work holistically with

individuals from diverse cultures and with perspectives different from our own, and do

so sensitively, ethically and with appropriate boundaries?

Self-Preparation

Self-knowledge and its impact on practice and decisions

Life experiences that shape our value preferences

Values or beliefs that influence our practice and decisions

Reflections on One’s Self

Need to be honest with yourself Recognize you are human Awareness of threat of paternalistic

approach to practice Potential dissonance between

ethics and discretionary judgments

Reflections on One’s Self

What are your beliefs regarding discussing death and dying with terminally ill clients? Harmful? Helpful? Conflictual?

What role do your cultural beliefs or practices play?

Personal Awareness

Practice Strategies

Walk with the individual - not ahead and not behind

Be open to his/her emotions & thoughts

Ask open-ended questionsWhat does his/her nonverbal

communication say?Encourage questions and voicing

of concerns

Approach

Use of different phrases: pay attention and use:

~Cross the river

~Walk on

~Passing to the other side

~Traveling to the spirit world

Honor Word Choice

If patient and/or family members do not speak English, then use a medical interpreter such that a family member does not need to serve as the interpreter; it could prove embarrassing or upsetting to translate personal information.

Language

Ask before touching (i.e. holding a hand or giving a hug) as touch may not be appropriate in some cultures.

Touch

Pay attention to and honor the type of eye contact that the

client uses.

Eye Contact

Asking About Cultural Beliefs in Palliative Care

(Lum & Arnold, 2009)

Language differences?Open discussions on dying?Who are the decision makers?Preferences regarding place of

death?How client & family think

about illness?

Cultural Reflections

“Some people want to know everything about their medical condition, and others do not. How much would you like to know?

Preference is family involvement:Would you like me to speak

with them alone, or would you like to be present?

Who Should Be Involved…

Is there anything that would be helpful for me to know about how you and your family view serious illness?

Are there cultural beliefs, practices, or preferences that affect you during times of illness?

Unique Cultural Values?

When open to discussing death:What concerns do you have

about dying?Are there things that are

important to you or your family that I should know about?

Unique Cultural Values?

Communal or Individualistic?Do you prefer to make

medical decisions about tests and treatments yourself, or would you prefer that others in your family or community make them for or with you?

Decision-Making?

Are there specific practices you would like to have in the hospital or home?

Are there aspects of medical care that you wish to forgo or have withheld because of your cultural beliefs? Is anything discouraged or forbidden?

Practices and/or Restrictions

Terminally ill & open to discussing death:

Are there specific practices that are important to you at the time of death or afterwards that we should know about?

Practices and/or Restrictions

Identify resource people from client’s community

Talk with an individual’s family and friends

Be aware of the need for, and availability of, interpreter services

Community Resources

Ethical & Boundary Challenges

Culture boundLess individualisticMore family centeredPreferences about prognosis &

disclosure of diagnosisTalking about dying and death

could be harmfulWhat are the ethical

challenges?

Autonomy & Self-Determination

Potential Boundary Violations?Gift giving and acceptingEncountering clients outside the

professional relationshipTriangulationInterrupting patient/client when

speakingStepping into clients’ physical

and emotional spaceWhat are the boundary

challenges?

Diversity in Preferencesat End of Life

Do not assume sameness…

There is diversity within diversity within

diversity…

Black Populations

Diverse:Africa (Ethiopia, Egypt) Caribbean Islands (Haiti, Jamaica)

Asian Populations

Diverse:Laos, Korea, China, Japan, Vietnam, Thailand, Cambodia

Latino Populations

Diverse:Central America, Puerto Rico, Mexico, South America, Cuba

Death God’s will; heaven; release

Notification of family crucial; family grieve in private

Traditional 9 days of prayerElders responsible for

autopsy decisionsOrgan donation more

acceptable to acculturated or highly educated

Mexican Americans & EOL

Death feared; unnaturalAcculturated Cubans inform

about pending death; more traditional Cubans inform male head of family

Public expression of grief – crying and screaming before and after

Autopsies and organ donations uncommon

Cubans & EOL

American Indian Populations

Diverse:Hopi, Navajo, Ojibwe, Mohican, Potawatomi, Ho-Chunk, Iroquois

Red Cliff Band of Lake Superior Chippewa

Cancer affects a person suddenly - fatal

Cancer treatments difficult to endure, cause physical strain, takes emotional toll on individual and loved ones

Cancer may result from a person’s spirit not being well, or a person lacking a connection to his/her spirit

Beliefs About Cancer

Cancer may be a repayment for something a person has done wrong or be the result of bad medicine inflicted by another

Community generally believes there are cultural solutions to cancer and the most effective way to deal with it is both physically and spiritually

Beliefs About Cancer

May be reluctant to visit doctor off the reservation, even if sick or suspect cancer due to fear judged complaining or wasting time

Often conditioned to not feel important or astute enough to decide to visit doctor

Many had, or heard about, bad experiences with a doctor, leading to mistrust and avoiding health care

Barriers to Cancer Care

Surgery may interfere with traditional belief that a person should go to the spirit world with his body completely intact

Very important to stay connected to the spirit, which travels under general anesthetic, so more likely to reject surgery if they fear loss of spirit during a medical procedure

Barriers to Cancer Care

Cultural belief that life is sacred and now that technology exists to treat cancer through

surgery and medication, community members may take

advantage in order to save their life

Open to Cancer Care

This work is dedicated to the terminally ill elders

who sacrificed precious hours of their remaining

days to share their dying experiences and to

teach me about dying.

After all...how can we, the living, teach others

about dying? We cannot. The dying are our teachers and we are the pupils.

I am deeply grateful to have been their pupil.

Dedication