Dr. Blackhall studies the question whether an absolute and uncompromising approach to patient autonomy may not violate the decision-making traditions of some cultures, resulting in harm to the patient.  It should, however, be noted in passing that sensitivity to the cultural values of the patient and their family should never be used as an excuse to avoid sharing painful news with a patient, especially if the patient is Catholic and may spiritually, psychologically, and sacramentally profit from time to intentionally prepare for death

—To study differences in the attitudes of elderly subjects from different ethnic groups toward disclosure of the diagnosis and prognosis of a terminal illness and toward end-of-life decision making.

Design. — Survey.

Setting. — Thirty-one senior citizen centers within Los Angeles County, California.

Respondents. — A stratified quota sample of 200 subjects aged 65 years and older self-identified as being from each of four ethnic groups: European American, African American, Korean American, or Mexican American (N=800).

Korean Americans (47%) and Mexican Americans (65%) were significantly less likely than European Americans (87%) and African Americans (88%) to believe that a patient should be told the diagnosis of metastatic cancer.

Korean Americans (35%) and Mexican Americans (48%) were less likely than African Americans (63%) and European Americans (69%) to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-supporting technology (28% and 41% vs 60% and 65%).

Instead, Korean Americans and Mexican Americans tended to believe that the family should make decisions about the use of life support. On stepwise multiple logistic regression, ethnicity was the primary factor related to attitudes toward truth telling and patient decision making.

—Korean-American and Mexican-American subjects were more likely to hold a family-centered model of medical decision making rather than the patient autonomy model favored by most of the African-American and European-American subjects. This finding suggests that physicians should ask their patients if they wish to receive information and make decisions or if they prefer that their families handle such matters.

FOR THE past 25 years, ethical and legal analysis of medical decision making in the United States has revolved around the idea of patient autonomy. The principle of patient autonomy asserts the rights of individuals to make informed decisions about their medical care. Thus, patients should be told the truth regarding their diagnosis and prognosis, as well as the risks and benefits of proposed treatments, and should be allowed to make choices based on this information. Although this ethical ideal is imperfectly realized in actual practice, the standard of care in this country is to tell patients the truth about even fatal illnesses,¹² to obtain their informed consent for major procedures," and to involve them in decisions about withholding resuscitation.^5,6 The ideal of patient autonomy is so powerful that attempts have been made to extend patient control over medical decision making even to those circumstances in which the patient has lost the capacity to make decisions through advance care directives, such as the durable power of attorney for health care.^7-1' A federal statute, the Patient Self-determination Act, has been enacted to enhance and preserve patient autonomy.

 Recently, however, it has been suggested that this focus on patient autonomy has become overly narrow and that other values, such as family integrity ^m4 and physician responsibility,^15,16 have been ignored. In particular, some have argued that this preoccupation with individual rights to the exclusion of other values may reflect a cultural bias on the part of the Western medical and bioethics communities.¹³⁴⁰⁷ To determine the attitudes of individuals of varying ethnic backgrounds toward patient autonomy in medical decision making, we surveyed 800 Korean-American, Mexican-American, African-American, and white (European-American) subjects as part of a larger study examining the attitudes of older Americans of varying ethnicities toward health care and medical decision making.

Korean-American and Mexican-American subjects were less likely than European-American and African-American subjects to believe that the patient should be told the truth about the diagnosis and prognosis of a serious illness and were less likely to believe that the patient should make decisions about the use of life support. Within the Korean-American and Mexican-American groups, older subjects and those with lower socioeconomic status tended to be opposed to truth telling and patient decision making even more strongly than their younger, wealthier, and more highly educated counterparts.

Our study suggests that the attitudinal differences among these ethnic groups are related to cultural rather than demographic variables, such as socioeconomic status, which tend to vary with ethnicity. In the Mexican-American group, in which the subjects had variable levels of acculturation, more acculturated subjects were more likely to share the patient autonomy model with the European-American and African-American subjects. As they begin to speak, think, and read more in English, and associate more with Anglos, they tend to take on the attitudes that are expressed by the English-speaking groups in our study. Socioeconomic status does not predict attitudes in the European-American and African-American groups. Instead, socioeconomic status may be acting as a marker for acculturation. Wealthier, more educated Mexican Americans are more likely to speak English and be in contact with values promoted in the English-speaking sectors of American society and more likely to adopt those values with respect to medical decision making.

There are several limitations to the generalizability of our data. Subjects aged 65 years and older are more likely to be faced with serious health care decisions for themselves or their loved ones; younger subjects may hold different views. Moreover, to prevent skewing our population toward younger, female subjects, we used a quota sampling technique rather than a true random sample of the entire elderly population of these four ethnic groups. Although we attempted to minimize selection bias by sampling from a wide variety of sites, our subjects may not represent all portions of those groups. Finally, our sample was from urban southern California; the attitudes of the elderly may differ by geographic location.

The decision-making style exhibited by most of the Mexican-American and Korean-American subjects in our study might best be described as family centered. Although the patient autonomy model does not exclude family involvement, in this family-centered model, it is the sole responsibility of the family to hear bad news about the patient’s diagnosis and prognosis and to make the difficult decisions about life support. Several prior studies of the issue of telling the diagnosis of cancer with different ethnic groups have yielded similar results. In one recent report, an Italian oncologist described the approach toward decision making in Italy as one in which the patient is frequently “protected” from bad news by the family and physicians? ² Autonomy is not viewed as empowering. Rather, it is seen as isolating and burdensome to patients who are too sick and too ignorant about their condition to be able to make meaningful choices. In a survey from Greece, only a third of those questioned believed that patients should be told the truth about a terminal illness .²³ As in our study, older subjects with less education were more likely to be opposed to truth telling. Anecdotal reports also note the tendency of Chinese and Ethiopian families to oppose truth telling on the grounds that it harms the patient by causing them to lose hope.^24,25 Other studies have shown that Latinos are more likely than Anglos to believe that cancer is a death sentence.²⁶ Finally, studies of physicians’ attitudes and practice show that those in Spain, France, Japan, and Eastern Europe rarely tell patients with cancer their diagnosis or prognosis, usually informing the family instead.27-29

    Thus, belief in the ideal of patient autonomy is far from universal. In this country, as recently as 1961, Okens° documented that 90% of physicians did not inform their patients of the diagnosis of cancer. By 1979, when this survey was repeated, this attitude had completely reversed. By 1979, 97% of physicians made it their policy to inform patients with cancer of their diagnosis.’ Most of the literature that discusses this change views it as simple progress from an uninformed paternalism to a more enlightened and respectful attitude toward patients.

Indeed, there have been many benefits to more open discussion and increased patient involvement in medical decision making.[:]

[1] It is probably impossible to completely deceive seriously ill patients when, despite all reassurance, they continue to deteriorate physically and to require hospitalization and medical care.

[2] Acknowledgment of the truth lets patients express their feelings and receive the emotional and spiritual comfort appropriate to the crisis they are experiencing.

[3] Allowing patients to choose from the range of treatment options available ensures that the treatment will conform to their preferences.

However, the high value placed on open expression of emotion and on the rights of individuals to control their destiny are not necessarily shared by all segments of American society. For those who hold the family-centered model, a higher value may be placed on the harmonious functioning of the family than on the autonomy of its individual members. Although the patient autonomy model is founded on the idea of respect for persons, people live, get sick, and die while embedded in the context of family and culture and inevitably exist not simply as individuals but in a web of relationships. Insisting on the patient autonomy model of medical decision making when that model runs counter to the deepest values of the patient may ironically be another form of the paternalistic idea that “doctor knows best.”

Many questions remain to be answered about how this family-centered model functions in actual practice. Do patients who are not told the diagnosis usually know it anyway? Is this information later communicated by verbal or nonverbal means? Is the interaction between patient and family different when the patient is the head of the household? What is the perceived harm when the medical community violates cultural conventions and insists on telling the truth to the patient? What disruptions occur in the coping mechanisms of the individual and the family? In what ways does acculturation change the beliefs of patients of various ethnicities, ie, how are the cultures of immigrants transformed and combined with the culture of their adopted country? We plan to explore these and other issues through in-depth ethnographic interviews with 10% of the study sample.

The purpose of our study was not to convince ethicists that there should be one set of moral rules for Korean Americans and another for European Americans, and we do not expect that the information we have obtained will allow physicians to predict with certainty the attitude of any given person from a partitular ethnic group. As our study demonstrates, much diversity of opinion about these issues occurs not only between ethnic groups but also within each ethnic group. Rather, we believe that it is vital to uncover the usually unspoken beliefs and assumptions that are common among patients of particular ethnicities to raise the sensitivity of physicians and others who work with these groups. Understanding that such attitudes exist will allow physicians to recognize and avoid potential difficulties in communication and to elicit and negotiate differences when they occur. In particular, we suggest that physicians ask patients if they wish to be informed about their illness and be involved in making decisions about their care or if they prefer that their family handles such matters.” In either case, the patient’s wishes should be respected. Allowing patients to choose a family-centered decision-making style does not mean abandoning our commitment to individual autonomy or its legal expression in the doctrine of informed consent. Rather, it means broadening our view of autonomy so that respect for persons includes respect for the cultural values they bring with them to the decision-making process.

 1. Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett JM. Changes in physicians’ attitudes toward telling the cancer patient. JAMA. 1979;241:897-900.

 2. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship. Washington, DC: US Government Printing Office; 1982;1:74-76.

 3. Cobbs v Grant, 8 C. 3d 229, 242-3 (1972).

 4. Beauchamp TL, Faden RR. A History and Theory of Informed Consent. Oxford, England: Oxford University Press; 1986:88-98.

 5. American Thoracic Society. Withholding and withdrawing life-sustaining therapy. Ann Intern Med. 1991;115:478-484.

 6. Council on Ethical and Judicial Affairs, American Medical Association. Guidelines for the appropriate use of do-not-resuscitate orders. JAMA. 1991; 265:1868-1871.

 7. Steinbrook R, Lo B. Decision making for incompetent patients by designated proxy. N Engl J Med. 1984;310:1598-1601.

 8. Schneiderman LJ, Arras JD. Counseling patients to counsel physicians on future care in the event of patient incompetence. Ann Intern Med. 1985;102: 693-698.

 9. Annas GJ. The health care proxy and the living will. N Engl J Med. 1991;324:1210-1213.

10. Emanuel L. Does the DNR order need life-sustaining intervention? time for comprehensive advance directives. Am J Med. 1989;86:87-90.

11. Emanuel E, Emanuel L. Living wills: past, present and future. J Clin Ethics. 1990;1:9-18.

12. Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992277:59-63.

13. Nelson JL. Taking families seriously. Hastings Cent Rep. 1992;22:6-12.

14. Orona CJ, Koenig BA, Davis AJ. Cultural aspects of nondisclosure. Camb Q Healthc Ethics. 1994;3:338-346.

15.   Blackball U. Must we always use CPR? N Engl J Med. 1987;317:1281-1284.

16.   Schneiderman LJ, Jecicer NS, Jonsen AR. Medical fultility: its meaning and ethical implications. Ann Intern Med. 1990;112:949-954.

17.   Levine RJ. Informed consent: some challenges to the universal validity of the Western model. Law Med Health Care. 1991;19207-213.

18. Hlatsky M, Boireu RE, Higgenbotham MB, et al. A brief self-administered questionnaire to determine functional capacity (the Duke Activity Status Index). Am J Cardiol. 1989;64:651-654.

19. Katz S, Ford AB, Moskowitz RW, Jackson BA, Jaffe MW. Studies of illness in the aged: the index of ADL, a standardized measure of biological and psychosoeial function. JAMA. 1963;185:914-919.

20. Marin G, Sabogal F, Marin BV, Otero-Sabogal R, Perez-Stable E. Development of a short acculturation scale for Hispanics. Hispanic J Behav Sci. 1987;9:183-205.

21. James SA, Wagner EH, Strogatz DS, et al. The Edgecombe high blood pressure control program, II: barriers to the use of medical care among hypertensives. Am J Public Health. 1984;74:468-472.

22. Surbone A. Truth telling to the patient. JAMA. 1992268:1661-1662.

23. Dalla-Vorgia P, Katsouyanni K, Garanis TN, Touloumi G, Drogari P, Koutselinis A. Attitudes of a Mediterranean population to the truth-telling issue. J Med Ethics. 1992;18:67-74.

24.  Muller JH, Desmond B. Ethical dilemmas in a cross-cultural context: a Chinese example. West J Med. 1992;157:323-327.

25.  Beyene Y. Medical disclosure and refugees: telling bad news to Ethiopian patients. West J Med. 1992;157:328-332.

26.  Perez-Stable EJ, Sabogal F, Otero-Sabogal R, Hiatt RA, McPhee SJ. Misconceptions about cancer among Latinos and Anglos. JAMA. 1992;268:3219 3223.

27.  Holland JC, Geary N, Marchini A, Tross S. An international survey of physician attitudes and practice in regard to revealing the diagnosis of cancer. Cancer Invest. 1987;5:151-154.

28. Estape E, Palombo H, Hernandez, at al. Cancer diagnosis disclosure in a Spanish hospital. Ann On-col. 1992;3:451-454.

29. Thomsen 0, Wulff H, Martin A, Singer P. What do gastroenterologists in Europe tell cancer patients? Lancet. 1993;341:473-476.

30. Oken D. What to tell cancer patients. JAMA. 1961;175:86-94.

31. Freedman B. Offering truth: one ethical approach to the uninformed cancer patient. Arch Intern Med. 1993;153:572-576.

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