Setting goals and making a plan for achieving them fosters hope and allows individuals and families to feel they have some control in their lives. As healthy aging progresses or incurable illness advances, individuals will change and adapt their health care goals. Negotiating, reassessing and revising goals of care are continuing responsibilities for the health care team.

Setting goals of care can be especially challenging when the patient and the health care team do not share the same cultural assumptions about incurable illness and end-of-life care. In this unit, you will consider the role of culture in setting goals of care and learn communication techniques for eliciting the patient’s values and preferences.

Learning objectives

After completing unit 3A, Considering Culture, you will be able to:
• Explain culture as a process that both patients and the healthcare team engage in.
• Identify core areas where medical ethics may conflict with underlying cultural values.
• Identify the 7-steps for setting goals of care.
• Practice the eight questions for eliciting the patient’s Explanatory Model for their illness.
• Practice the LEARN process for eliciting the patient’s values and preferences for care.

There are many ways of thinking about culture. For some, culture is ethnic background, for others it’s customs and beliefs, and for still others, culture is seen as artifacts in a museum.

In the clinical setting, it is helpful to think of culture as the process of making meaning, building social relationships, and shaping the world that we inhabit.

Taylor 2003

When we understand culture as a process we realize that:
• Culture is dynamic. It is historical and changing, and isn’t limited to traditions, beliefs, or artifacts.
• Individuals who share the same culture vary in their participation in the culture.
• Individuals may be involved in more than one cultural group.

Participants in a clinical encounter are engaging in the cultural process, whether as patients monitoring their health and seeking remedies or as practitioners diagnosing and treating disease.

Patients and families bring culturally shaped understandings of their illness and its meaning in their lives to the clinical encounter.

Heath care practitioners carry understandings of disease and the patient’s best interest that are shaped by their culture of origin and the culture of Western medicine.

These understandings are shared and modified in the clinical exchange of information between patients and the health care team.

Kleinman, Eisenberg, & Good 1978

Learning culture-specific rules for caring for diverse patients is neither effective nor realistic and can lead to stereotyping.

It is useful, however, to be aware of core values that may lead to cultural conflicts. These include preferences for gender roles, physician authority, physical space, family roles, and communication, as well as beliefs and practices about disease, spirituality, and death.

Underlying cultural values are most likely to come into conflict with the values of biomedicine in three areas:
• attitudes toward advance directives and end-of-life care,
• full disclosure of diagnosis
• individual versus family-based decision making

Searight & Gafford 2005

The following examples are well documented. Perhaps you have observed similar values that conflicted with biomedical ethical values in your practice:

• Attitudes toward advance care planning and treatment options—compared with whites of Northern European background, patients who belong to other ethnic groups are less likely to complete formal advance directives.
• How bad news should be communicated—informing the patient may be viewed as harmful and family members may be the preferred recipients of diagnostic and treatment information.
• Who should make decisions about the patient's care—decisions may be made by an individual informally appointed by the family, by the family through an informal consensus, or by physician-family collaboration.

Differences in underlying cultural assumptions about health, illness, dying, and treatment may mean that the health care team must modify their approach to setting goals for care.

Cultural identity does not predict an individual’s values. It best to ask the patient early in the relationship:
• how he or she would like information to be handled
• who should be making decisions.

It may be useful for this conversation to take place in the context of a family meeting so that all can hear the same information.

The vulnerability of the patient and the authority of the physician often lead to an uneven exchange in which the practitioner’s understandings are imposed on the patient without equal attention to the patient’s values and beliefs.

The unequal exchange between patient and physician occurs even when both share the same culture and is further complicated when their underlying values and experiences are shaped by different cultures.

Jecker et al. 1995

The following seven steps for setting goals of care are adapted from the 6-step protocol for communicating bad news:

1. Create the right setting
• Sit down
• Assure privacy and time

2. First, determine what the patient/family know
• Clarify the current situation
• Understand the context in which decisions about goals of care should be made

3. Ask how much the patient/family want to know and discuss with you
• If they do not want to discuss goals of care, determine whom you should talk to
• Some patients and families will ask the physician to decide
• When there is time, try to engage them in the decision-making process rather than provide them with answers

4. Explore what they are expecting or hoping for
• Focus on what you will do to help them achieve those goals
• As appropriate, identify those things that you can’t do, either because they will not help achieve the goals or because they are not possible

5. Suggest realistic goals
• Share your scientific knowledge about the patient’s illness, its natural course, the experience of patients in similar circumstances, and the effects that contemporary health care may have, to assist with decision-making
• Suggest realistic goals (e.g., comfort, peace, closure, loving care, withdrawal of interventions, etc.) and how they can be achieved
• Work through unreasonable or unrealistic expectations

6. Respond empathically to the emotions that may arise

7. Make a plan and follow through

EPEC-O. Education in Palliative and End-of-life Care - Oncology

Pa Lee, 61, is in hepatic failure and has chronic hepatitis B. She was admitted to the intensive care unit through the Emergency Department with massive hematemesis due to bleeding from esophageal varices. The bleeding was stopped by endoscopic sclerosis of the varices. She is currently stabilized and on a medical floor.

Over the past six years, Mrs. Lee has been using a combination of herbal remedies (khawv koob), shamanistic ceremonies, and visits to the Emergency Department for her hepatitis and resultant failing liver. She does not have a primary care physician, but she has sought treatment at the local hospital Emergency Department several times for crises such as variceal bleeding.

Mrs. Lee has moderate ascites and has had one episode of spontaneous bacterial peritonitis (SBP), which was resolved with intravenous (IV) antibiotics. She has had prior episodes of encephalopathy, a complication of her hepatitis, which were controlled with medication. She has difficulty eating because of her liver disease, and she has lost significant body mass.

Following an earlier variceal bleed, a beta-blocker and placement of a transcutaneous intrahepatic portal shunt (TIPS) were recommended, but the patient and family refused. Because of her advanced liver disease, Mrs. Lee is considered a high-priority candidate for a liver transplant, but she has refused this option in the past.

Adapted from Culhane-Pera, et al. 2003

The hospital's treatment team expects that as Mrs. Lee's liver failure progresses, complications are inevitable, including further bleeding, progressive encephalopathy, and recurrent episodes of SBP. Dr. Thompson plans to discuss treatment options with Mrs. Lee, including reconsideration of the TIPS procedure, placement of a tube for artificial nutrition, and follow-up care after discharge.

Dr. Thompson visits Mrs. Lee and explains the options the treatment team would typically recommend for someone in her situation. She listens but resists making treatment decisions, explaining that she needs to consult with her husband, their uncle, Mr. Chang, and their shaman.

If you were Mrs. Lee's nurse practitioner, what would you do at this point?

Type a brief answer in the text box then click to see what Mrs. Lee’s physician decides to do.

Mrs. Lee is originally from the highlands of Laos, where her family were farmers. She has a large and supportive family in the U.S.

Mrs. Lee makes decisions about her health care after seeking the advice of the family and clan, particularly her husband and an older uncle, and is thus assured of their support when it is needed.

Culhane-Pera, et al. 2003

Explanatory Models answer questions about the identity, cause, duration, effects, and mechanisms of the illness, and address the patient's fears, problems, and expectations of treatment. The original questions have been adapted and used successfully by clinicians for years. You can adapt them so they are effective for you and your patients.

Questions for eliciting patients Explanatory Models of their illness experiences:

Dr. Thompson returns later that afternoon to check on Mrs. Lee. He is wondering why she would hesitate to have the TIPS procedure. He asks Mrs. Lee if they can discuss her illness.

How does your Explanatory Model of Mrs. Lee disease differ from hers? What implications does this difference have for what you would do next?

Type a brief answer in the text box. In a few minutes you will see what Mrs. Lee’s physician decides to do.

Perhaps you felt that you needed to learn more about Mrs. Lee’s beliefs. You may also have noted that you had an obligation to be sure she was making a fully informed decision. At the same time, you may have begun looking for common ground and a way to honor Mrs. Lee’s wishes.

L.E.A.R.N. is a mnemonic device that will help you organize your approach to eliciting information about the patient's culture and incorporating her preferences in the plan of care. The steps are:

The mnemonic is not meant to be restrictive, but rather to guide you in allowing patients to take center stage as the experts on their illness and culture.

The exchange between Dr. Thompson and Mrs. Lee reveals that Explanatory Models, like the culture they embody, are dynamic and change in response to events in their environment.

Both Dr. Thompson and Mrs. Lee modified their Explanatory Models for her illness:
• Mrs. Lee gained a fuller understanding of the physical progression of her disease.
• Dr. Thompson accepted the patient's preference for collective, rather than individual, decision making and for spiritual peace over relief of physical symptoms.

Dr. Thompson and Mrs. Lee completed all five steps of L.E.A.R.N. in order to arrive at a plan of care for Mrs. Lee that respected her beliefs and values and allowed her to make informed choices.

It will not always be possible or appropriate to complete L.E.A.R.N. in one conversation. You may need to complete the steps over several discussions and adapt the order and focus according to your patient's needs.

Cultural values and preferences around goals of care may vary as much among members of the same culture as they do between members of different cultures.

Intra cultural diversity is shaped by gender, age, class, education, acculturation, and life opportunities and may mean that even members of the same family do not fully share the same culture.

Intra cultural diversity may account for differences in health-seeking behaviors and decision making among members of the same cultural groups.

Consider, for example, two Chinese American women with similar immigration histories and diagnoses of metastatic cancer:
• One woman expects her family members to make decisions for her while she is ill.
• The other makes decisions on her own, and she does not include her physician in her decisions to use traditional Chinese therapies along with western medicine.

Hern et al., 1998

Stereotyping is best avoided by asking the patient about her values, beliefs, and preferences.

Culture is a process by which all people make sense of their lives, order their relationships, and shape their world.

Explanatory Models and LEARN provide frameworks for inquiring about and understanding culture processes.

To explore a patient's understanding of their illness, ask questions about:
• The identity, cause, duration, effects, and mechanisms of their illness.
• Their fears about the illness and the problems it causes, and their expectations of treatment.

The five steps in L.E.A.R.N. will help you consider cultural processes in your interactions with patients and their families. The steps are:
• Listen
• Explain
• Acknowledge
• Recommend
• Negotiate.

Berlin, E. A., Fowkes, W. “A Teaching Framework for Cross-cultural Health Care.” Western Journal of Medicine 1983; 139:934-938.

Culhane-Pera, K. A., Wawter, D. E., Phua Xiong, Babbitt, B., & Solberg, M. M. (Eds.) Healing by Heart, Clinical and Ethical Case Stories of Hmong Families and Western Providers. Nashville, TN: Vanderbilt University Press, 2003.

Culhane-Pera, K. A., Vawter, D. E. “A study of healthcare professionals' perspectives about a cross-cultural ethical conflict involving a Hmong patient and her family.” Journal of Clinical Ethics 1998; 9(2), 179-190.

EPEC-O. Education in Palliative and End-of-life Care - Oncology. Module 9 – Negotiating Goals of Care. National Cancer Institute.

Fadiman, A. The Spirit Catches You and You Fall Down: A Hmong Child, American Doctors, and the Collision of Two cultures. New York: Farrar, Strauss, and Giroux, 1997.

Hern, H. E., Jr., Koenig, B. A., Moore, L. J., & Marshall, P. A. “The difference that culture can make in end-of-life decision making.” Cambridge Quarterly of Health Ethics 1998; 7(1), 27-40.

Jecker, N. S., Carrese, J. A., Pearlman, R. A. “Caring for patients in cross-cultural settings. Hastings Center Report 1995; 25(1), 6-14.

Kleinman, A., Eisenberg, L.” Culture, illness, and care: Clinical lessons from anthropologic and cross-cultural research.” Annals of Internal Medicine 1978; 88(2), 251-258.

Kleinman, A. Patients and healers in the context of culture: an exploration of the borderland between anthropology, medicine and psychiatry. Berkeley: University of California Press, 1980.

Searight, R.H. & Gafford, J. “Cultural Diversity at the End of Life: Issues and Guidelines for Family Physicians.” American Family Physician 2005; 71(3): 515-522.

Stone, M.J. “Goals of Care at End of Life.” Baylor University Medical Center Proceedings 2001; 14(2): 134 – 137.

Taylor, J. S. “The story catches you and you fall down: tragedy, ethnography, and “cultural competence.” Medical Anthropology Quarterly 2003; 17(2): 159-181.

True, G., & Allman, R. “Hmong patient's end-of-life goals foreign to western physician.” In E. Phipps & P. Pennese (Eds.). Last Acts statement on diversity and end-of-life care. Washington, D.C.: Last Acts National Program Office, 2001: 5 – 7.