UICC World Cancer Congress 2006

Cancer has been the leading cause of death in Taiwan since 1982. According to cancer epidemiology data from the National Cancer Registry in Taiwan, the cancer incidence rate in 2002 was 283.01 per 100,000 people, and 63,736 people overall were diagnosed with cancer (Department of Health, 2006). The cancer mortality rate was 160.54 per 100,000, and 36,357 people overall died from cancer in 2004 (Department of Health, 2006). On average, slightly more than one-fourth of all deaths (27.20%) in Taiwan were caused by cancer in 2004 (Department of Health, 2006). Given the high mortality rate for cancer compared to other diseases, receiving a cancer diagnosis has long been viewed by many Taiwanese as a metaphor for death. The disclosure of a cancer diagnosis and prognosis has been an important but still unresolved issue in cancer treatment and care in Taiwan. Cultural, social and ethical concerns are believed to play important roles in truth telling about cancer diagnosis and prognosis. Truth telling in Taiwan may be influenced by four major social-cultural and ethical factors: (1) family as a key player in medical-related decision making, (2) harmony as an essential value for both the individual and family, (3) taboo about discussing death and related issues, and (4) ethical concerns in truth telling: the predominant value of nonmaleficence (do no harm) leads to not telling the truth.

In contrast to Western cultures, which adhere to more individually oriented philosophies, traditional Chinese cultures place more value on the collective role of family in decision making. In addition, the long-standing influence of Confucian philosophy has established “harmony” as an essential and important social value. Individual and family harmony is believed to be essential for both the prosperity of a family and a nation. The essential role of these values in Chinese society is captured in a well-known Chinese proverb: “Family harmony makes everything successful and prosperous.” Family harmony is believed to be the basis of a Chinese nation's prosperity. Therefore, practices that might disturb harmony are not encouraged in Chinese society.

Furthermore, death is a taboo subject in traditional Chinese society. Chinese believe that discussing or thinking about death or death-related concepts or approaching a dead body will hasten death. Therefore, in traditional Chinese society, people rarely discuss or even mention matters related to death. For example, sick people are not be encouraged to attend funerals because they could become even sicker, which might lead to death. Another example is that hospitals rarely have a floor numbered “4” since the pronunciation of “4” in both Mandarin and Taiwanese is similar to that of “death.” Patients staying on the fourth floor would feel that their room assignment is a sign of very bad luck that could affect their recovery.

In Chinese society, one of the major functions of a family is to protect family members, particularly children and old people, from dangerous situations. Also, many Chinese believe that the sick should be treated as children who need to be protected from harm. These beliefs in protecting family members and causing no harm are valued as part of maintaining family harmony. Thus, any bad news, such as a cancer diagnosis or prognosis, becomes a critical issue between the family of a cancer patient and health care professionals. Not telling a patient his/her cancer diagnosis is a way for the family to protect the patient from further hurt by the diagnosis and to preserve both individual and family harmony. The predominant values of nonmaleficence and family harmony in Taiwanese society have been closely linked to truth telling in cancer care. This linkage has been particularly true in the care of very old and very young cancer patients, whose families do not want to tell them their diagnosis or only the less severe aspects of their prognosis.

Changes in truth telling in cancer diagnosis over the past 20 years have been influenced by several health care system factors. Potential factors include initiation of a national training program for oncologists, advances in cancer treatments, development of cancer clinical trials, the hospice movement in Taiwan, a national training program for oncology nurses, and increased awareness of chronic illness, including cancer, in Taiwan since the mid-1980s. These factors have contributed to a society that is more concerned with an individual's right to know about health issues and have made the truth telling issue more visible. For example, truth telling about cancer diagnosis is necessary to patients who participate in cancer clinical trials. More patients inquire about their diagnosis and prognosis before deciding to participate in a cancer clinical trial or anti-cancer treatments. The hospice movement and media dissemination of hospice concepts in the past 15 years have also raised the issue of discussing cancer diagnosis and prognosis at the terminal stage. Patients have the right to know their cancer diagnosis and prognosis.

However, only few published studies have examined truth telling in cancer diagnosis and prognosis in Taiwan during the past three decades. A search of international and Taiwanese journals revealed only a few research papers on this issue. The issue of truth telling has been approached from the points of views of patients, family caregivers and health care professionals. The earliest research paper on this topic was published in 1982 by Chen, who interviewed family caregivers of cancer patients in Taiwan about their attitudes toward telling the truth. More than half (58.6%) of family caregivers disagreed about telling patients the truth, and only 39.7% agreed to tell the truth. The major reasons for not telling the truth about cancer were (1) worry that patients could not take the emotional impact, (2) worry about not being able to manage the patients' emotional reaction after learning the truth, and (3) “protecting patients from harm.” These findings indicate the need to support family caregivers as they help patients cope with the emotional impact of learning the diagnosis of a life-threatening disease. However, we found no recently published paper that directly examined family caregiver attitudes toward this issue.

From the patients' perspective, no research on this issue was reported in Taiwan before 1996. In the past 10 years, three studies have focused on Taiwanese cancer patients' attitudes toward truth telling. One study (Ger et al., 1996) found that only 37.2% of newly diagnosed cancer patients knew their cancer diagnosis, whereas two other studies found that 79% of cancer and non-cancer patients were informed about their diagnosis (Lin et al., 1999; Tsai et al., 2001).

However, a study by Tang and Lee (2004) found that 93.7% of cancer patients on an oncology ward knew their diagnosis, and 90.9% had previously been informed of their cancer diagnosis, but merely 45.2% were informed about their prognosis. Of those patients who knew their cancer diagnosis, about 4% thought their disease was “non-malignant” or ”benign.” Patients knew much more information about their diagnosis than about their disease status. For example, the stage of cancer and extent of metastasis were disclosed to only 30.0 and 20.6% of patients, respectively. Regarding the cancer prognosis, only one-fourth (26.6%) to less than one-third (30.0%) of patients preferred to know their chance of survival and expected length of survival, respectively. However, even fewer patients, only 4.4% and 3.8%, respectively, actually received the above-mentioned information from physicians. Patients strongly preferred that health care providers inform them about the diagnosis and prognosis before disclosing the information to their family members (Tang & Lee, 2004). Similarly, a self-report survey of 195 people admitted to a medical center in southern Taiwan for a 3-day health examination showed that 92.3% of participants preferred being informed the truth about their cancer diagnosis and 7.7% did not (Want et al., 2004). Individuals who preferred being told the truth were more likely to be younger, highly educated, and employed. On the other hand, when participants were asked, “If your relative were diagnosed with cancer, would you prefer your relative be told the truth?” less than two-thirds of participants (62.6%) thought the victim should be informed of the cancer diagnosis, and 37.4% preferred not telling the truth. Of the individuals who disagreed about disclosing a diagnosis if they themselves had cancer, 93.3% also preferred not telling the truth to a relative if diagnosed with cancer. The reasons given for not telling the truth to a relative with cancer were that the relative would: (1) be unable to stand the diagnosis (63.0%), (2) worry excessively (46.6%), (3) not cope well with the situation (27.4%), and (4) commit suicide (8.2%). These findings suggest that individuals in Taiwan might have different attitudes toward truth telling about cancer diagnosis, depending on whether they were a patient or a relative. Since this study was conducted in southern Taiwan, it's possible that regional cultural differences exist in truth telling between northern and southern Taiwan. These differences should be further examined to understand the needs of patients and family members in disclosing cancer diagnosis.

From the perspective of health care professionals in Taiwan, truth telling in cancer diagnosis and prognosis has been a long-standing care issue. Two major ethical issues identified by hospice professionals caring for terminal cancer patients were truth telling and place of care (Chiu et al., 2000). Chiu et al.'s study also pointed out that the intention and process of telling the truth were often interrupted by relatives. A nationwide survey of 229 palliative care workers (72.5% nurses and 16.6% physicians) suggested that several factors made family members reluctant to tell patients the truth. These factors were (1) the family did not know how to tell the truth, (2) the family did not think it was necessary to tell the truth to elderly patients, and (3) patients would be better or happier if they didn't know the truth.

Taking these findings together, we conclude that truth telling in Taiwan is still highly dependent on setting (oncology or non-oncology related) and health care providers' preparation. It is obvious that many physicians and health care professionals are still not well prepared to tell patients' about their diagnosis. It is also obvious that patients' expectations are quite different from what health care providers offer (Tang & Lee, 2004). The challenge for health care professionals is to balance and deal with the increasingly conflicting needs of family members and patients.

Changes in the health care system and study results over the past 30 years in Taiwan raise several important issues. First, awareness of truth telling in cancer diagnosis and prognosis is rapidly increasing in both early and terminal-stage cancer patients. Patients, family members, and health care professionals all face the challenge of dealing with patients' preferences to know the truth. Second, patients now demand to know much more disease-related information and their prognosis in detail than family members and health care professionals expect. Cancer patients prefer and expect more autonomy to have their individual rights and make their own decision about knowing the truth. Furthermore, cancer patients prefer to know their diagnosis and prognosis from health care professionals before family members are informed. Third, family caregivers currently have insufficient education and support in truth telling to manage the consequences, concerns, and worries from telling the truth to cancer patients. Fourth, differences have been found in the preparation among health care professionals in telling the truth about cancer diagnosis and prognosis, especially between oncology/hospice-related staff and non-cancer-specific health care providers. These differences make truth telling quite different across different settings. To prepare health care providers with the skills and knowledge to tell the truth, more professional education is a high priority. Overall, the gap between cancer patients' urgent inquiries about knowing the truth and the lack of preparation among health care professionals in answering these important queries becomes the most challenging aspect of truth telling in Taiwan.

In conclusion, the salient inquiries for autonomy in truth telling among Taiwanese cancer patients strongly suggest that the traditionally predominant ethical principles of “nonmaleficence and beneficence,” which lead to hiding the truth and culture-linked family determined truth telling approach, is being challenged and substituted by a greater concern for cancer patients' “autonomy.” To meet these challenges, several systemic changes are needed. Schools of nursing and medicine need to actively educate their professionals, more empirical research is needed on this topic, and governmental policies are needed to support truth telling. In these ways, health care professionals, cancer patients and their families will be deal more honestly with their disease.

References

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2. Chiu TY, Hu WY, Cheng SY, Chen CY. Ethical dilemmas in palliative care: a study in Taiwan. J Med Ethics, 2000, 26: 353-7

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