The ethical issue affecting the Watanabe family reflects an apparent conflict between the usual American approach to bioethical decision making and the cultural values of the Watanabe family. American bioethics is steeped in a tradition that emphasizes personal autonomy and patients' rights along with the physician's duty to be beneficent and treat patients justly.

In particular, the principle of beneficence shapes the physician's duty to help patients, while the principle of autonomy stems from the recognition that people have the unique capacity to make reasoned choices and bear moral responsibility for their actions. These principles have important implications for patient decision making. As the American Medical Association Council on Ethical and Judicial Affairs states, "It is a fundamental ethical requirement that a physician should at all times deal honestly and openly with patients. Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their condition ... Ethical responsibility includes informing patients of changes in their diagnoses resulting from retrospective review of test results or any other information. This obligation holds even though the patient's medical treatment or therapeutic options may not be altered by the new information." The Council also wrote that, "The patient's right of self-decision can be effectively exercised only if the patient possesses enough information to enable an intelligent choice. The patient should make his or her own determination on treatment. The physician's obligation is to present the medical facts accurately to the patient or to the individual responsible for the patient's care and to make recommendations for management in accordance with good medical practice. The physician has an ethical obligation to help the patient make choices from among the therapeutic alternatives consistent with good medical practice."¹

Thus we commonly assume that patients want to be informed and make choices that reflect their values and priorities. In Mr. Watanabe's case, he cannot make an informed treatment choice without knowing his diagnosis, yet his daughter is adamant that he not be told.

Much of American bioethics is founded on the assumption that the physician's first obligation is to the patient. Moreover, patients have the right to all relevant information and should be encouraged to make their own "autonomous" treatment decisions. Our notion of informed consent, or informed refusal, form the foundation for the doctor-patient relationship. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research² states that, "The ethical foundation of informed consent can be traced to the promotion of two values; personal well-being and self-determination. To ensure that these values are respected and enhanced, the commission finds that patients who have the capacity to decide their care must be permitted to do so voluntarily and must have all relevant information regarding their condition and alternative treatments, including possible benefits, risks, costs, other consequences and significant uncertainties surrounding any of this information." Similar positions are taken by the American Hospital Association in the Patient Bill of Rights³ and the American College⁴ of Physicians Ethics Manual.⁵

In general, informed consent is a two-part process that includes disclosure by the health care professional and the patient’s decision to either accept or decline the treatment. The elements of informed consent include the information to be discussed, the patient's comprehension, the patient's decisional capacity, and the voluntariness of the decision. The information to disclose includes the nature of the intervention; the purpose of the intervention, including how any knowledge gained from the procedure will change the treatment course or outcome; the risks of the intervention including their severity and likelihood; the benefits of the proposed intervention; and any alternative interventions, including what would happen without further treatment. Consent forms provide written documentation of the patient's decision.

Throughout the discussion the doctor should assess the patient's comprehension. Frequently asking the patient if he or she has questions is helpful for assessing the level of the patient's understanding. If the doctor has any doubts about the patient's comprehension, the physician should ask the patient to tell the doctor about the proposed treatment to assess the patient's understanding. If the patient shows any confusion, the physician should review the issue in more simple terms, consider involving a family member to help explain, and try to provide written materials to supplement the discussion. So too, the physician must consider the patient's decisional capacity. The physician must establish whether this patient can decide then. He reminds Jean that, although the terms "decisional capacity" and "competency" are often used interchangeably, competency involves a court determined assessment. In contrast, any knowledgeable lay person can do an assessment of decisional capacity. If deciding whether a patient has decisional capacity is difficult, the physician should consult with a psychiatrist, neurologist, or similarly trained person with expertise in capacity assessment. The features of decisional capacity include the ability to comprehend, possession of a value system, and the ability to communicate. The decision must be made voluntarily, without coercion, manipulation, deception or bribery.

In the Watanabe case, there is no question that Mr. Watanabe can comprehend the issue at hand, nor is there any question about his capacity. Yet although he can decide, his daughter Jean maintains that he would prefer not to know the details of his diagnosis. How then can Mr. Watanabe make an informed choice about treatment options? Would delegating the decisions to his daughter deprive him of his right to make plans about his future? Would withholding this information from Mr. Watanabe be consistent with an ethical approach to patient care? How does this reflect cultural differences and expectations? In short, how can the physician beneficent toward Mr. Watanabe while respecting his autonomy?

Placing the issue of disclosure within an historical context is helpful. Over the past thirty years, American physicians' disclosure practices have changed.⁶ In 1961, 90% of physicians favored not telling patients they had cancer, but by 1979, 97% favored telling. This increase in the number of physicians who tell patients about cancer can be attributed to many factors. Certainly the patients' rights movement and the emphasis on patient autonomy have played a role. In addition, physicians may fear malpractice suits for failure to disclose and for the patient's "lost chance" to seek prompt treatment. Moreover, there is no support for the longstanding myth that knowing the diagnosis is bad for the patient. In 1982 the President's Commission stated, "There is very little empirical evidence to indicate whether and in what ways information can be harmful. Not only is there no evidence of significant negative psychological consequences of receiving information but, on the contrary, some strong evidence indicates that disclosure is beneficial."⁷ Although physicians may withhold information from a patient whom they believe would be directly harmed by the disclosure, this "therapeutic exception" is intended to be very narrowly interpreted and time limited.

Yet we cannot simply assume that all patients must be well informed to make health care decisions and to work in effective partnership with the physician. While the nature, purpose, risks, benefits, and alternatives of a given treatment must be disclosed in terms the patient can understand if we are to meet American standards for informed consent, the physician must consider the patient's cultural background and expectations about health care decision making.

Some critics of bioethics have mistakenly concluded that the concept of patient autonomy requires that patients make their own treatment decisions. This is a serious misconstrual of the principle of autonomy. Patients may prefer to delegate decision-making authority to others and may wish to remain uninformed about their own medical condition. Authorizing another to decide is perfectly acceptable, provided the patient is making that choice freely. American bioethics, although stemming from an emphasis on patient rights, recognizes the importance of cultural values in decision making and the important web of relationships within which patients make their choices. The key point is that the decision maker is chosen by the patient and that choice can be changed by the patient anytime. As Pellegrino states, " ... autonomous patients are free to use their autonomy as they see fit - even to delegate it when this fits their own concept of beneficence ... To thrust the truth or the decision on a patient who expects to be buffered against news of impending death is a gratuitous and harmful misinterpretation of the moral foundations for respect for autonomy."⁸ The principle of autonomy remains universally valid because it recognizes the unique qualities inherent in personhood. Its implementation across cultures may differ, however, depending upon cultural values and expectations.

In this case, Mr. Watanabe's cultural beliefs and values may be more consistent with traditional Japanese approaches. We must recognize that the common understanding of informed consent rests on a uniquely American foundation. In Japan, and in other countries, the decision about whether to disclose to a patient a diagnosis of cancer is delegated to the patient's family members, most of whom choose not to reveal the truth.⁹,¹⁰ While American physicians' attitudes about disclosure have changed over the past thirty years, so that now most physicians disclose diagnoses,¹¹ the Japanese approach has not changed as much. Currently about 13% of Japanese doctors inform cancer patients of their disease. Most doctors in Japan believe that telling patients is cruel and can produce isolation and harm to family relationships. Moreover, in Japanese culture there is a strong death taboo and emphasis on cure rather than palliative care. The Japanese notion of what constitutes good patient care in the realm of disclosure of diagnoses differs dramatically from our American concept, turning away from an approach that focuses on patients' "rights."

Some compare the present Japanese practice surrounding truth disclosure to that of the United States thirty years ago. Yet in a recent study, 60% of Japanese individuals surveyed said they would want to be told the truth. Moreover, in 1989 the Japanese Ministry of Health and Welfare recommended truth telling in cancer care.¹² The four principles the group advocated talking into account were 1) the aims of truth disclosure, 2) the ability of the patient and family to bear the truth, 3) establishing a good relationship between health care workers and the patient and family and 4) a commitment of health care workers throughout the management of the patient. The expectations in Japan may be changing, yet a sizable minority of Japanese patients prefer not to know their diagnosis, despite official recommendations.

The key point is that patients have the right not to know information if they prefer to have others make informed choices for them. One cannot assume that values and expectations about decision making in health care are universally shared. The challenge is to determine the patient's beliefs and values and reconcile them with those of other family members and the health care providers. The only way to be sure about how much involvement the patient wants is to ask the patient, preferably before the time of a crisis. The doctor should have had this discussion with Mr. Watanabe far earlier in their relationship. The physician should ask Mr. Watanabe if he prefers to have someone else decide, and if so, whom. He should ask the limits that Mr. Watanabe might want to impose on others' decision making authority, and how much information Mr. Watanabe wants to have. Simply knowing that Mr. Watanabe is a member of a cultural group that traditionally prefers not to know does not solve the problem, because the doctor does not know whether this patient shares that cultural view.

One way to approach patients is to for the doctor to state that there are some important issues regarding the patient's care to discuss, and then wait for the patient's response. If the patient names an individual that the patient wants to serve as the decision maker, such as an eldest son, then the physician should respect that choice by clarifying the situation with the patient, documenting the situation in the patient's chart, and proceeding to work with the designated decision maker. In addition, physicians need to recognize that knowing one's diagnosis and prognosis is not an all or nothing phenomenon, and that a patient's knowledge level can vary along a continuum. One approach to the patient is that of "offering truth"¹³ in which the patient is offered the opportunity to become informed to whatever degree that patient wishes. In that way, the information can be conveyed over time to the extent the patient is comfortable.

For Mr. Watanabe, there is no evidence that he "could not handle the news." Out of respect for Mr. Watanabe's autonomy the physician must assume that he can handle the news unless shown otherwise.¹⁴ However, physicians cannot overlook the concerns raised by the patient?s family, and should consider that family a valuable resource. However, the doctor must remain cognizant of the fact that the family's concerns may be shaped, in part, out of fear of loss. It is only ascertaining the patient's true preferences that physicians can respect the patient's autonomy in a meaningful way.

2. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Washington, D.C.: The Commission, 1982.

3. American Hospital Association, "A Patient’s Bill of Rights", 1973.

4. American Medical Association Council on Ethical and Judicial Affairs, Code of Medical Ethics, 1996-1997 edition, page xli.

5. American College of Physicians Ethics Manual. Annals of Internal Medicine 1992; 117:947- 960.

6. Novack DH, Plumer R, Smith RL, Ochitill H. et. Al. Changes in physician’s attitudes toward telling the cancer patient. JAMA 1979; 241(9):897-900.

7. President’s Commission for The Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions, Volume 1, 1982.

8. Pelegrino ED. Is Truth Telling to the Patient a Cultural Artifact? In The Social Medicine Reader, Duke University Press: Durham, North Carolina, 1997.

9. Uchitomi Y, Yamawaki S. Truth-telling practice in cancer care in Japan. Annals of New York Academy of Sciences, 1997; 809:290-9.

10. Tanida N. Japanese Attitudes toward truth disclosure in cancer. Scand J Soc Med, 1994, vol 22(1):50-7.

11. 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.

12. Japanese Ministry of Health and Welfare and the Japan Medical Association. 1989. The Report for Terminal Care. Chuo Hoki Shuppan, Tokyo. (In Japanese)

13. Freedman B. Offering truth: one ethical approach to the uninformed cancer patient. Arch Intern Med, 1993, vol 153, 572-6.

14. Bok S. Lying: moral choice in public and private life. In Mappes T, Zembaty J. Biomedical ethics, 3^rd edition. New York: McGraw Hill, 1991.

Disclaimer: Clinical information is provided for educational purposes and not as a medical or professional service. Persons who are not medical professionals should have clinical information reviewed and interpreted or applied only by appropriate health professionals.