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Care at the Close of Life: Evidence and Experience
Stephen J. McPhee, Margaret A. Winker, Michael W. Rabow, Steven Z. Pantilat, Amy J. Markowitz
Part G Cross-Cultural and Special Populations Issues
Chapter 32. Negotiating Cross-Cultural Issues at the End of Life: “You Got to Go Where He Lives”
Marjorie Kagawa-Singer, PhD, MN, RN, Leslie J. Blackhall, MD, MTS
Final Choices by a Chinese American Family


Topics Discussed: clinical decision making, cultural competence, hospice care, incorporating patient values and preferences

Excerpt: "Although informed consent is a major tenet of health care in the United States and other countries, truth telling about diagnosis, and especially about the prognosis of potentially fatal illnesses such as cancer, is not the norm in many parts of the world.82,83 Studies performed in Spain,84 Italy,85-87 France,88 and Eastern Europe,88 as well as much of Asia,50,89Mexico,90 Central and South America,30,75,91 and the Middle East,80,92-95 document the widespread belief held by physicians, families, and patients that withholding medical information is more humane and ethical than frank disclosure. A review of attitudes toward disclosure in Spain84 noted that less than half of patients with cancer are fully informed. The word tumor is often used instead of the more anxiety-provoking term cancer, and both diagnosis and prognosis are usually discussed in an indirect or ambiguous manner. The authors of this review note that the Spanish palliative care movement has gradually moved away from wholehearted support of open disclosure in all cases. A report by an Italian oncologist in 199285 described the decision-making style in Italy as one in which the patient is "protected" from bad news by physicians and family, and although attitudes in Italy may be changing somewhat,89 a 2001 study found that only 47% of those surveyed believed that patients should be told the truth about a terminal illness. Only 13% of these respondents wanted to be informed of their own impending demise.87 In a Greek population survey, only a third of the respondents believed that patients should be told of a terminal illness. Older respondents and those with less education were less likely to favor truth telling.96 Patients who have emigrated from countries where truth telling is not common often bring that perspective to medical encounters in this country.14,75,89 Even in the United States, as recently as the early 1970s physicians commonly withheld the diagnosis of cancer.97 Not until 1979 did the first article note the practice trend of disclosing a cancer diagnosis,98 and although open discussion of diagnosis has now become the norm in this country, discussing prognosis remains difficult. (See also Chapter 19, Complexities in Prognostication in Advanced Cancer.) One study of oncologists published in 2001 found that only 37% would give a truthful estimate of prognosis even when asked directly by the patient.99..."
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