Data Supplements

Data Supplement A

Learning Point: Biomedicine Is Itself a Cultural System

Specific learning objective:

  • Recognize the ways that culture, history and politics influence the production and use of medical diagnoses and nosology; discuss three to five examples of this process.

Case-Based Discussion

Create an argument for why prenatal diagnosis to identify and abort female fetuses in the context of rural India (Parikh 1990; Unnithan-Kumar 2010) is just as morally defensible as prenatal testing to identify and abort fetuses with Down’s syndrome (Parens and Asch 1999).

Data Supplement B

Learning Point: Neither Cultural Sensitivity nor Cultural Competence Are Sufficient for Cross-Cultural Clinical Ethics

Specific learning objective:

  • Define and distinguish between “cultural sensitivity,” “cultural competency,” and “critical consciousness.”

Assignment

Students are instructed to keep a “field notes” style journal, in which they observe, describe, and analyse how culture has shaped an aspect of medicine or medical school life. They are asked to identify contextual issues such as relations of power, social norms, economics, politics and cultural beliefs and values. Possible examples include the medicalization of child birth, the place of bioethics in the medical school curriculum, flu vaccinations for medical students, and nurse-physician roles.

Data Supplement C

Learning Point: Culture Shapes All Decisions, Not Just the “Wrong” Ones

Specific learning objective:

  • Identify how culture may play a role in the identification of ethical dilemmas. Specifically, articulate arguments for (i) how patient-provider differences in cultural beliefs and values may lead to ethical dilemmas in health care and (ii) how the cultural beliefs and values of biomedicine may shape what we categorize as an ethical issue.

Case-Based Discussion

The Amputee Wannabe and the Actress (Insistence on Aggressive Treatment)

Alan is a healthy, active, male in his mid-forties. He has approached you requesting amputation of his healthy right leg. He tells you that he has felt like an amputee for years; even as a young boy he knew that being an amputee is the way he should be. He directs you to research about others who have felt “trapped” in a body that was not their own, who requested surgery to have their body altered to make them feel like their body fits their “self.” He also directs you to websites by other “amputee wannabes.” Psychiatrists describe it as “Body Integrity Identity Disorder.” From what you have read, the existing literature makes the persuasive argument that nothing except amputation can help such individuals be themselves. How do you proceed?

Mary is an eighteen-year-old actor. She comes to see you requesting breast augmentation through implants. She tells you this is something she has thought long about; she has felt embarrassed about having breasts that are relatively small. She also feels that larger breasts would increase her opportunities as a candidate for acting roles. You worry about the short and long term risks of this unnecessary aggressive surgery. You have heard that complications include breast pain, changes in nipple and breast sensation, chest wall deformity, rupture of the implants leading to additional surgeries, and other potential complications. How do you proceed?

The goal of the case-based discussion is to identify when and how “culture” has shaped decision-making, by holding up both sets of culturally shaped values and beliefs for scrutiny. We use the framework for ethical decision making offered by Philip Hebert in his textbook for education physicians in ethics(Hebert 1997). Emphasis is placed on making note of one’s “gut” reaction to the case at the beginning of the ethical decision-making process, and then comparing and contrasting that initial knee-jerk reaction of the “right” thing to do with the decision arrived at through the decision making framework. Those occasions when the initial reaction about the right thing to do is markedly different from the final decision—based on holding up both sets of culturally shaped values and beliefs for scrutiny—are useful learning opportunities for students of cross-cultural clinical ethics. A useful resource for the ethical and legal aspects of healthy limb amputation is Johnston and Elliott (2002).

Data Supplement D

Learning Point: Ways of Imagining the “Self” Vary Across Cultures and This Has Implications for Moral Decision-Making

Specific learning objectives:

  • Appreciate and describe cultural variations in patient decision-making, with a focus on challenges to the bioethics concept of autonomy.
  • Apply an ethical decision making framework to cases where cultural beliefs and values have shaped (i) insistence on aggressive intervention and (ii) refusal of intervention.

Case-Based Discussion

Mrs. Siva and Mr. Wayne (Refusal of Care)

A seventy-four-year-old woman, Mrs. Siva, presents to ER in extreme pain. She requires a surgery that is fairly invasive and not without significant risks, but without the procedure she will surely die. Mrs Siva is accompanied by her husband. They are political refugees from Sri Lanka; they have recently arrived to this city, along with their adult son and his family. In Sri Lanka she had been a well-to-do home maker. Here, she is employed in the kitchen of a large hospital. She speaks almost no English; her husband speaks some English. She is competent. The husband describes themselves as “staunch Hindus.” You hold the consent discussion with the wife, via an interpreter, and with the husband present. The husband speaks on behalf of his wife. He tells you that his wife is too afraid; she has changed her mind and will not have the procedure. In an attempt to have the wife express her own beliefs, you ask the husband to leave the room and hold the consent discussion with the wife. She refuses to engage in the discussion, deferring to her husband’s wishes. How do you proceed?

Mr. Wayne is a seventy-two-year-old homeless man who is known fondly to the locals of his city. He presents to ER with multiple medical conditions. He has lived on the streets for twenty-two years, declining any offers of housing provided at the expense of the state. He has prescriptions for many medications which he fails to take as indicated. This is just the latest of many admissions to the ER. Nurses are frustrated by the human and material resources taken up each time he enters the hospital, including personal hygiene attention, wound care, food, rest, and extensive medical treatment. Because he does not adhere to the treatment regime and declines offers of housing, his health is rapidly deteriorating. He has been deemed competent by two separate psychiatric assessments. He declines shelter and declines returning as an outpatient to receive the necessary medications. He explains that he is homeless by choice. He does not want to live within the confines of a room and according to society’s rules. How do you proceed?

Have the students discuss the cases in relation to each other, focusing on paternalism (and its diverse connotations) and the intersection of culture and relations of power in the ethical decision making process.

Data Supplement E

Learning Point: Culture Is Not a Straightforward Predictor of Beliefs and Behaviour

Specific learning objectives:

  • Define and distinguish between culture, ethnicity, and race.
  • Describe the disadvantages and dangers of essentialism in the provision of health care.
  • Explain when and how the concepts of “culture,” “ethnicity,” and “race” can be (a) useful and (b) not useful in the provision of healthcare.

Case-Based Discussion

A Choice for K’aila (Refusal of Care)

Leslie and Francois Paulette, of First Nations heritage, were told that their eight-month-old would need a liver transplant to survive. They were deeply disturbed by the possibility of the baby’s enduring painful treatment only to face a life of uncertain prospects. In addition, they held the belief that foreign organs from another person should not be transplanted. Their doctor, though sympathetic, was disturbed at the prospect of withholding treatment. He had successfully treated several children, including some from the same First Nations community. He also had held discussions with a spiritual leader within the Paulette’s First Nations community and was told that there was no prohibition against transplanting organs. The case went to court in Alberta, and eventually the family was permitted to take K'aila home to die(Downie 1994; Paulette 1993).

We have students view the documentary filmA Choice for K’aila produced by Canadian Broadcasting Corporation (28 minutes), released in 1993 by Filmakers Library ( Discussion centres on the distinction between the Paulette’s culturally shaped beliefs and values and those of the clinician, and on the clinician’s observation that the parents’ worldview was not adhered to by the native elder whom he consulted.

Data Supplement F

Learning Point: Know When and Where to Draw the Line with Cultural Accommodation

Specific learning objectives:

  • Articulate arguments for when cultural values of patients should and should not be accommodated in resolving an ethical dilemma.
  • Identify situations in which referral elsewhere is ethically acceptable.
  • Identify situations in which refusal of care without referral to another provider is ethically acceptable.

Case-Based Discussion

Rita and Alice (Insistence on Aggressive Treatment)

Rita is an eighteen-year-old university student of Sudanese origin. She comes to see you requesting genital cutting. She tells you this is something she has thought long about; it is a point of pride for her, a way to honour her traditions. She also wants to get married someday and this has prompted the late-in-life decision to have the procedure done. She tells you her decision is not prompted by family pressure. Rita has told you that if you are unable to provide the surgery, she will have to travel to another city to see a traditional practitioner. You are aware of reports that the procedure may be done without anaesthesia; you have heard stories that the surgery may even be done unsafely using scissors, razor blades, or broken glass. You are aware that the immediate and long-term risks and consequences can be serious and life-threatening. However, even if the procedure is done safely you worry that there may still be risks related to future birth complications, urinary and menstrual problems, painful sexual intercourse, infertility, and other potential complications. How do you proceed?

Alice is an eighteen-year-old Muslim woman, pregnant with twins, who adheres strictly to the teachings of her faith. She has requested that only women healthcare workers be present for her clinical appointments and for the birth of her babies. Her request cannot be accommodated easily in this context of limited human resources in the small medical centre. The closest urban area is too far away geographically to be a realistic alternative for the delivery, and the woman does not wish to relocate for a time because of the challenges that would pose to her family of young children. The medical centre staff, noting that other Muslim patients have not had issues with male birth attendants, argue that it is unreasonable to accommodate her request. How do you proceed?

Have students present and defend arguments against and in favour of accommodation. Encourage them to reflect on gender relations, power, and culture including the culture of biomedicine, American culture, Muslim culture (Kridli 2002), and Sudanese culture (Boddy 1982) in relation to the two cases.

References for Supplemental Material

Boddy, J. 1982. Womb as oasis: The symbolic context of pharaonic circumcision in rural northern Sudan. American Ethnologist 9(4, Symbolism and Cognition II): 682–698.

Downie, J. 1994. A choice for K’aila: Child protection and First Nations children. Health Law Journal 2: 99–120.

Hebert, P.C. 1997. Doing right: A practical guide to ethics for physicians and medical trainees.Oxford: Oxford University Press.

Johnston, J.,and C. Elliott. 2002. Healthy limb amputation: Ethical and legal aspects. Clinical Medicine 2(5): 431–435.

Kridli, S. al-Oballi. 2002. Health beliefs and practices among Arab women. MCN: The American Journal of Maternal/Child Nursing 27(3): 178–182.

Parens, E.,and A. Asch. 1999. Special supplement: The disability rights critique of prenatal genetic testing reflections and recommendations. The Hastings Center Report 29(5): S1–S22.

Parikh, M. 1990. Sex-selective abortions in India: Parental choice or sexist discrimination? Gender Issues 10(2): 19–32.

Paulette, L. 1993. A choice for K’aila. Humane Medicine 9(1): 13–17.

Unnithan-Kumar, M. 2010. Female selective abortion–beyond “culture”: Family making and gender inequality in a globalising India. Culture, Health & Sexuality 12(2): 153–166.