Food or Medicine
Culture and ethnicity shape patient’s and families’ view about artificial hydration (AH) at the end of life, with ethnic minorities seeing it as food more often than non-Hispanic European Americans, according to 2012 research.
“Identifying some of the beliefs and barriers regarding the decision-making process in this challenging area may provide preliminary evidence for culturally appropriate end-of-life communication strategies and care that incorporates individual assessments of the pros and cons of hydrating in each particular context,” suggest Isabel Torres-Vigil of the University of Houston, Texas, and co-investigators.
They conducted an interview-based study of 122 terminally ill cancer patients, asking, “Are these fluids more like food or more like medicine?” The study authors sorted answers as food, medicine, both or other.
Results showed 38% saw AH like food, 34% as medicine, 14% as both, and 14% as other (including vitamins and saline). Ethnic minorities perceived the AH as food 66% of the time vs. 41% for non-Hispanic European Americans.
The findings were significant enough that the research team suggest when patients with advanced cancer begin to decrease their oral intake of fluids, healthcare professionals should ask what perceptions they or their caregivers have about the role of AH to promote the most patient-oriented approach to end-of-life care.
Source: British Medical Journal: Supportive and Palliative Care, July 2012.
This article was originally published in Pathways Physician & Health Professional Bulletin - Issue 26. To download this issue in PDF format, or past issues, visit our newsletter archives online at www.pathwayshealth.org/publications.
One definition of culture: "The constellation of values, norms and behavior guidelines that are shared by a group of individuals." -Reflections on Nursing Leadership, 1st Qtr 2001
American medicine applies certain bio-ethical principles, such as autonomy and truth-telling, that can be at odds with the values of some of the many cultures found in the Bay Area.
These Western bio-ethical principles are based on Anglo-European values, which are also reflected in American law. People from other cultures, whether caregivers, patients or families, may bristle when healthcare providers attempt to adhere to these values.
Withholding from patients information needed to make informed treatment decisions is illegal. Yet in many cultures telling patients negative information about their health condition is harmful to the patient. Talking to the patient instead of the oldest child may also be seen as an infringement on the proper role of the family.
Distrust of the system
Significant distrust of the healthcare system exists. In a group of culturally mixed elders in New York City researchers found:
- Many equated less aggressive treatment with abandonment.
- Many thought having an advance directive was harmful, especially if it burdened one person.
- Most were reluctant to name anyone but a family member as a proxy or agent.
Another example would be the African-American history of slavery and exploitation as test subjects. African-Americans are half as likely as Anglos to opt for treatment to improve quality of life at the expense of length of life, even if pain will be constant.
People that are poorer or socially disadvantaged expect to be denied care and often regard advance directives as legal devices of the health care system to deny care. Some close-knit families feel that advance directives are destructive, and are incredulous on learning about laws that conflict with family decision-making.
One pattern seems to transcend almost all cultures: the elderly tend to have and prefer a passive voice in decision-making (e.g. “Doctors do the best they can”).
Cultural multiplicity
In one culture illness may be seen as a test of faith and withdrawing treatment may be construed as interfering with God’s will, while in another using extraordinary treatments may be considered interfering with God’s will.
Pacific Island cultures may feel dying outside the home will leave the departed wandering without a place to rest while in another Asian culture, Chinese, death may be seen as a harbinger of more bad luck for the family of the deceased, so the patient may want to avoid dying at home.
In many cultures, language and thought shape reality. Talking about death must be avoided in places as diverse as Greece, China, Italy, Mexico, Korea, and countries in the Horn of Africa.
Can’t Know All Cultures
Clearly, we cannot know all cultures. So how do we go about being culturally sensitive? Proceed with caution. Here are some things to bear in mind when working with a culturally diverse population:
- Not all members of a particular culture share the same beliefs.
- Find out how much the resident wants to know.
- Ask who the patient would like to be informed about health issues.
- Ask who to discuss treatments and outcomes with.
Above all, leave your cultural beliefs at the door when you go to work. Deciding what the patient should or should not know is a form of paternalism. It is also a distortion of the healthcare provider’s role as a patient advocate.
Consider taking a “values history.” Find out:
- The patient’s perception of roles of caregivers and physician.
- The importance of self-sufficiency to patient.
- His or her attitude toward life (what brings enjoyment).
- What the patient fears most.
- What would be important to the person when dying?
- What is their religious background and belief system?
Although we want to avoid stereotyping, generalities can be useful: “I know that in some families of your culture we see [ ]. Is this true in your family also?”
In a nutshell
Cultural sensitivity can be reduced to a few simple concepts:
- Leave your own cultural beliefs and biases at the door.
- Ask questions, then listen.
Bio-Ethical Principles
- Autonomy: individual rights trump all
- Truth-telling: patients have a right to full disclosure
- Justice: resources should be equitably allocated.
- Confidentiality: Patients have a right to privacy
- Beneficence: act in the best interest of the patient
- Non-malfeasance: do no harm
- Responsibility: agree and adhere to regimen
At Pathways...
Early during the admission visit, the nurse asks the patient how much information about their health condition they would like to know, and whether they want to make their own healthcare decisions.
If they do not want to be the decision maker or know about their condition, we ask who they would like us to speak to.
If the patient does not speak and understand English very clearly, the nurse calls the AT&T language line and asks these questions via a translator. At subsequent visits a family member may translate.
Documenting this exchange meets the ethical principles of autonomy and truth-telling while respecting the patient’s cultural beliefs.
