Question: My mom, who has lived in a small farm village in rural China all her life, became severely ill, and I the daughter decide to send her to the United States to find out what’s wrong with her. I take mom to a specialist and accompany her for all the tests. The diagnostic tests show that mom has terminal cancer and that no effective treatment is available. I insist that the doctor not tell mom because I fear the bad news would destroy her. Is it ethical to withhold information from a patient? Is a patient’s cultural background an important factor in truth telling?
In our August 2009 blog we discussed truth telling in medicine. We suggested that debates about truth telling are complex but they usually come down to disagreements about the limits of paternalism and the proper balance between the physician’s duty of beneficience and the patient’s right of autonomy. An analogy to paternalism is the relationship between a father and his child. A father acts beneficently (i.e. in accordance with his conception of the best interests of his child) when he makes decisions relating to his child’s welfare without consulting him. In like manner, realizing that he has superior training, knowledge and insight in health matters, a physician is in an authoritative position – analogous to a father – to determine a patient’s best interests. He acts paternalistically – and in his mind beneficently – when he makes healthcare decisions unilaterally without soliciting the input of his patients.
The case study above is an example of paternalism. In a reversal of roles, the daughter is acting paternalistically towards her mother when she asks the physician to withhold the diagnosis of terminal cancer because she fears that the bad news would destroy her mother. If the physician were to comply with the daughter’s wishes, he would be participating in the paternalistic behavior of the daughter. What are the limits of paternalism? What is the proper balance between the physician’s duty of beneficence and the patient’s right of autonomy? The two characters in our case study are Chinese. Does country of origin impact truth telling?
We will discuss the dominant traditional attitudes towards truth telling in China, Japan, Lebanon and the United States. China and Japan have a strong paternalistic tradition toward truth telling. Lebanon is going through a transition from a tradition of paternalism to a modern embrace of the principle of patient autonomy. And in the United States the principle of patient autonomy rules over the tradition of paternalism.
A paternalistic attitude toward truth telling in medicine is dominant in China[i]. Influenced by the philosophies of Confucianism and Taoism, the tradition of Chinese ethics emphasizes the good behavior of the practicing physician rather than a system of principles and rules. In Chinese tradition a good physician is paternalistic. Accordingly, he would not disclose to a patient that he has terminal cancer; rather he would tell the spouse or other close family member. In China families want to hear the news first. They care for their sick at home, rather than in institutions. Family bonds are so strong in China that they would rather bear the psychological shock of the bad news of a terminal diagnosis rather than share it with their loved one. They want their dear family member to remain hopeful and optimistic. And for their part, patients prefer not to be informed of a terminal illness. They willingly relinquish their right to autonomy and let family members make health care decisions for them.
Japan has a similar paternalistic tradition[ii]. In 1995 the Ministry of Health and Welfare reported the results of a truth telling survey in Japan. It found that only 30% of patients were told they have terminal cancer and that 67% of families felt satisfied that the diagnosis was withheld from them. In Japan physicians usually disclose a terminal diagnosis to family members, not the patient. Like the Chinese, the Japanese feel that disclosure of such bad news brings loss of hope and unwanted emotional distress which may lead to isolation, depression and even suicide. There are strong authoritarian and paternalistic elements in the Japanese healthcare system. For example, even during routine check-ups, physicians often do not fully explain to the patient the reason for a planned examination and don’t disclose test results directly to them. Drugs are often prescribed with their labels removed. And paternalism is sanctioned by the courts. In 1995 the Japanese Supreme Court ruled that physicians are not obliged to inform cancer patients of the nature of their condition, upholding earlier rulings by district and high courts.
Truth telling in Lebanon demonstrates a transition from a tradition of paternalism to a modern embrace of the principle of patient autonomy in developed countries. There are several interesting findings in a 1999 survey of 498 patients with terminal cancer in Lebanon[iii]. In this survey the majority of physicians stated they would opt for what is thought to be the culturally accepted norm, viz. withholding disclosure of a terminal illness from the patient and rather telling the family. However, the majority of patients prefer disclosure. The same survey found that patient preference for disclosure of a cancer diagnosis correlates highly with younger age, better education and better professional achievement. The attitude toward truth telling in Lebanon suggests a transition from the long tradition of physician paternalism in many cultures to the modern embrace of patient autonomy.
Preference for concealment appears to be the prevalent attitude in traditional cultures where paternalistic-beneficent attitudes of physicians predominate over respect for the autonomy rights of patients. A crucial factor responsible for the transition from paternalism to autonomy is education. People who have little access to information have a rudimentary understanding of an illness, its treatment, diagnosis and prognosis. However, when people become educated and have access to good information, they become more aware of the scientific basis of the illness and the limits of modern medicine. And as people become more educated, they refuse to accept the authority of paternalism. They prefer to make decisions for themselves and assert their autonomy.
In the United States, ethical issues in medicine have evolved around the principle of patient autonomy. This principle asserts the rights of patients to be informed of their diagnosis, prognosis and the risks and benefits of therapies, and to be allowed to make informed decisions about treatments and withholding resuscitation. In the United States autonomy has become a moral absolute. In this respect, Pellegrino[iv] lists several reasons, including improved education of the public, a strong tradition of privacy rights and personal liberty, a distrust of authority, the possibilities of medical technology and the loosening of family and community identification in the United States. Pellegrino then proposes that the fundamental issue in the controversy over truth telling is not a culturally bound phenomenon, but a universal phenomenon of conflict between traditional values and the contemporary Anglo-American concept of autonomy. This may be true but it’s important to highlight the importance of education in the transition from paternalism which is dominant in traditional cultures to autonomy which has trumped beneficence in modern cultures.
Back to our case study, was the daughter right to urge the doctor to withhold the diagnosis of terminal cancer from her mom because she feared that the bad news would destroy her? And is their Chinese heritage an important factor in truth telling? As we discussed above, in the traditional agrarian Chinese culture it was common practice for families to shield their loved ones from learning of a terminal diagnosis, and indeed the patient prefers they do so. In traditional Chinese culture patients expected that family members would make healthcare decisions for them.
As we discussed in our August 2009 blog, there are two main situations in which it is justified to withhold the truth from a patient: (1) if the physician has compelling evidence that disclosure will cause real and predictable harm or (2) if the patient states an informed preference not to be told the truth. In our case study it would be difficult to fault the daughter who wants to withhold the bad news from her mother since that position is common practice in agrarian China. In that tradition a family shields their loved one from the shock of a terminal diagnosis and indeed the loved one prefers not to be told. Thus the daughter has compelling cultural evidence that disclosure would cause real and predictable harm to her mother and that her mother would prefer not to be told the truth. Thus her request to the physician may be justifiable.
Would the physician be right to comply with the daughter’s request? As we discussed the principle of patient autonomy usually trumps paternalism in American culture. From the physician’s perspective he has no clear evidence of predictable harm and he does not have the patient’s informed consent not to be told the truth. Yet if he learns of the Chinese agrarian tradition, he would be sympathetic to the daughter’s request. Clearly he should take the time to have a serious discussion with the daughter. He should evaluate suicide risk. If the mother has a history of serious depression and the daughter strongly suspects that the bad news would put her mother in real jeopardy of suicide, he would have reason to withhold the truth from his patient. Barring suicide risk he may want to present some reasons why disclosure may help her mother. Above all, he should stress that the impact of the truth on patients depends largely on how it is told. There is no need to be blunt. Patient autonomy can be served by offering the patient “the opportunity to learn the truth, at whatever level of detail the patient desires”[v].
[i] Side Li & Ha-Ling Chou. Communication with the cancer patient in China, Annals of the New York Academy of Sciences, 1997; 809: 243-248
[ii] Yosuke Uchitomi & Shigeto Yamawaki. Truth-telling practice in cancer care in Japan, Annals of the New York Academy of Sciences, 1997; 809: 290-299
[iii] Salim M. Adib & Ghassan N. Hamadek, Attitudes of the Lebanese public regarding disclosure of serious illness, Journal of Medical Ethics, 1999; 25: 399-403
[iv] Edmund Pellegrino, Is truth telling to patients a cultural artifact?, Journal of the American Medical Association, 1992; 268: 1734-5
[v] Benjamin Freedman “Offering the Truth: One Ethical Approach to the Uninformed Cancer Patient”, Archives of Internal Medicine 153 (8 March 1993), 572-76