Beliefs, Customs, and Traditions That Contribute to End-of-Life Decisions
Michael P. Anello, Center for the Study of Bioethics
Goal of project: A reference manual to assist physicians when dealing with a particular
culture and end of life decisions. Cultures: Asian American, African- American, American
Indian, and Latino.
Instructions: “We are interested in gathering information on individuals in the
southeastern region of Wisconsin. The questions assume pan- cultural attitudes among
ethnic groups in this region. Where specific status, educational, religious, generational, or
geographic divisions exist and have varied practices, please indicate the existence of
these divisions and their particular cultural practices. We are primarily concerned with
disenfranchised individuals whose wishes are more likely to be discounted or
over- looked by the medical community. I will present specific topics and questions
followed by broader questions, and then a final section where you can express concerns
that I may have missed, and any personal experiences if you would like to share them.”
Terminology: Vocabulary from the interview guide is adapted to the particular
background (knowledge, profession, etc.) of the interview subject. Where necessary,
anecdotal stories are used to illustrate the questions.
To draw out information on a question: (1) ask the interview subject to imagine a
hypothetical interaction that could have been handled better. "What would you want a
physician to know so that these mistakes could be avoided with future patients?" After
hearing the information, repeat it back to the interview subject to confirm the correct
understanding of the information. (2) If desired issues are not raised by the interview
subject, then guide the discussion using the specifics from the interview guide. (3) Don't
ask "Why do you do this!" It puts people on the defensive. After initial interviews, have an
independent person go through recording of interviews to polish techniques
Profile of interview subject: At the beginning of the interview ask the interview subject
to give a brief summary of their family history, and their (professional) affiliation with the
particular cultural group:
2) location of formative years
3) experience as a consumer of the health care system: level of use (outsider/insider)
4) professional and/or lay affiliation with your community or cultural group
5) profile of the community constituency
1. Informed Consent: Informed consent refers to a physician's obligation to provide full
information about the risks and benefits of a treatment which that physician
recommends, in order to help a patient decide whether or not they want that medical
• Among (your ethnic group), is it customary for healers to provide information on
medical treatment and/or end of life decisions to the patient only, to particular family
members other than the patient, individuals outside the family (i.e. religious
representatives), or some combination of all these individuals; does the patient and/or
family expect the doctor to make these decisions? Are there exceptions to the
• Among (your ethnic group) who would use this information to make medical decisions:
only the patient, particular family members other than the patient, individuals outside
the family (i.e. religious representatives), or some combination of all of these?
• To be the most sensitive for communication when discussing end of life medical
treatment decisions with the appropriate decision makers, what behavior should health
care providers display, in order to accord respect to the patient, members of the
family, and non-family members (i.e. touch patient's arm, sit down, discussion
conference room, look person in the eye, ask if decision-maker has a question, avoid
certain Western behaviors)?
2. Confidentiality: To protect a patient's privacy, our Wisconsin Statutes state that
anything a patient tells a physician must be kept a secret by the physician.
• Among (your ethnic group) is confidentiality between the doctor and patient important?
• Or is it acceptable, or even important for the physician to discuss medical matters with
individuals other than the patient? Which individuals? What about AIDS?
3. Incompetent Patients and Patients Who Do Not Have Decision Making Capacity:
Non-medical jargon: If a patient fell into a coma, and wouldn't regain consciousness,
and an important medical treatment decision needed to be made promptly (life
support, etc.) would medical decisions customarily be made by certain members of the
family, religious representatives, or a combination of individuals?
• Are there exceptions to the custom?
4. Advance Directives: Are the concepts of living will and durable power of attorney
generally known about and accurately understood (among your ethnic group)?
• Of those individuals who accurately understand these concepts, how do individuals
feel about them?
• To what degree are advance directives used by individuals (among your ethnic
• When a patient enters a hospital or nursing home, federal law says that the patient
must be told about the right to refuse medical treatment and that the patient has the
option of filling out a living will or durable power of attorney. Since the law requires a
hospital to ask about this regardless of a patients cultural beliefs, what approach
should a doctor or nurse take when discussing advance directives with a patient? (i.e.
speak with other family members, religious representatives-- i.e. "I have to ask this, I
hope it doesn't offend you.")
5. Life support: Are individuals (among your ethnic group) generally familiar with
ventilators, life support machines that assist breathing? Would individuals, in general,
want to remain on life support machines to keep them alive if they would never be able
to return to their prior lifestyle?
6. Withdrawal of Tube Feeding: Is it acceptable to members (among your ethnic group)
to start tube feeding? If tube feeding is through nose? If tube is put in patient's
stomach with an operation. Is it acceptable to withhold or withdraw artificial feeding
(tube feeding) from patients among (your ethnic group)?
7. Do Not Resuscitate Orders (DNR): Among individuals of (your ethnic group), is the
concept of "terminally ill" generally accepted? If so, is it acceptable not to perform
cardiopulmonary resuscitation on a terminally ill patient?
• When the doctor believes a patient is going to die or his condition won't improve,
would people in your culture expect the doctors to attempt to revive a person who's
heart and lungs have stopped functioning by performing CPR-Cardiopulmonary
Resuscitation-- chest compressions and breathing into someone's mouth to help them
start breathing and help their heart to start beating again; even if it caused great
damage to the patient's chest and ribs?
8. Hospice: Are individuals of (your ethnic group) aware of, and understand the function
of hospice care? Is it appropriate to discuss this option? Who should be included in
1. Trust: Do individuals among (your ethnic group) trust medical and health care
professionals? What can health care providers do to establish trust?
2. Traditions: Are there any end-of-life traditions that the health care team should be
aware of? Any special foods, rituals, services, prayers, preparations, etc.?
3. Gender: Are there any male/female concerns that doctors and nurses should be
aware of, for example patients feeling uncomfortable being undressed in front of a
doctor or nurse of the opposite sex, or other privacy, modesty concerns?
• Would traditions involving gender roles (of your ethnic group) affect a patient's
perception of health care providers (i.e. confidence, trust, or interaction and
communication with the health care provider)?
4. Customs: What social traditions, in general, should health care providers be aware of
in order to facilitate the discussion among the patient, family, and other decision
makers. (i.e. are there practices that a health care provider should avoid in order not to
offend someone: gender, generational practices)?
5. Religion: Are there religious traditions that affect medical treatment decisions? For
example: Belief in miracles? Preservation of life at all costs? Refusal of surgery or
treatments due to religious beliefs? Refusal of technology in all situations, etc.?
6. Language Barrier and Literacy: Are there adequate translators available to interact
with the medical community? Are there enough? Do these translators have adequate
medical knowledge to make discussions truly informative? Do they translate, or try to
put something in their own words instead of asking the M.D. a question and then
translating the answer? In your experience, does the translator help the patient decide
what to do? What do people in your culture think the translator's role should be?
• If gender-role traditions, generational customs, and suspicion of outsiders or
translators (Latino only: not of the same ethnic group) might affect communication, are
there enough translators to overcome these concerns? Are there other ways to
overcome these obstacles? What can the medical community do to assist translators?
7. Other Comments, Concerns, or Suggestions: (Determine if information stems from
a single bad experience: "ax to grind")