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End-of-Life Ethical Issues in Japan
Feature Article
End-of-Life Ethical Issues in Japan Anne J. Davis, RN, PhD, and Emiko Konishi, RN, PhD
Abstract: This article discusses the endof-life ethical issues of disclosure of information to the terminally ill patient, informed consent, and overtreatment for the elderly people of Japan. These issues are placed within the cultural context of Japan, which is discussing and developing ways to deal with them. The ethical problems that nurses confront when they work clinically with elderly patients also are outlined. No consensus has been reached about the ethics of health care in Japan. (Geriatr Nurs 2000;21:89-91)
J
apan is one of the oldest societies on earth,1 and its elderly citizens live longer than any other population in the world. By 2010, 25% of the Japanese will be older than 65. As Japan prospered in the 20th century, the birth rate steadily declined to the present crisis point of 1.43 births per woman, well below replacement level. Two-thirds of women between 20 and 30 have never married. In 1997, the number of Japanese older than 65 exceeded the number of Japanese under 15. These demographic realities place great stress on the national health service and other social institutions. (For a more detailed description of this situation, see the GN article by Kawai in the May/June 1996 issue). Some of the problems with the elderly population are ethical issues at the end of life. This article describes disclosure of information to the terminally ill patient, informed consent, and overtreatment and briefly explains the cultural factors involved. The lack of laws and ethical guidelines for end-of-life decisions create great difficulties for clinical nurses. The Japanese often rely on situational ethics. That is, people prefer caseby-case decisions that rely on the physician’s and family’s discretion rather than universal ethical principles as guidelines. This preference is true not only for patient situations but also in many areas of Japanese life.
DISCLOSURE Disclosure of information remains the most debated end-of-life issue in Japan. The normal notification method is for the physician to approach the ter-
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minally ill patient’s family and explain the situation to them. They then decide whether giving the patient information is harmful. In the name of doing good, the diagnosis and prognosis usually are withheld from the patient. When informally asked why this should be the case, Japanese health professionals often give three reasons: if patients are told this bad news, they will stop fighting, give up, and die or become depressed or commit suicide. Many Japanese consider the long-standing practice of withholding the truth from terminal patients to be appropriate in their culture. But research does not always support this view. Several studies about disclosure of cancer diWhen the patient agnosis focus on what the Japanese would want if they does not have developed cancer. In several studies focused on disclosure the necessary of information, most respondents said they want to be information or told their cancer diagnosis, but far fewer said that people general should be given opportunity to in this information.2 In other studies, more enter into than 80% of cancer patients who were told their diagnosis dialogue with said they were satisfied with being told the truth.3 Family his or her family members of cancer patients with advanced cancer reand physician, ported that 75% of these patients accepted the news of informed consent their diagnosis in a calm manner, and only one patient thoughts about suibecomes voiced cide.4 Although these studies present one picture of truthimpossible. telling regarding a serious diagnosis, the fact remains that few patients are given this information. When a physician first goes to the patient’s relatives, they are in a position to make decisions, including the one of whether the patient should know or not. If they give the usual response that the patient should not be told, the physician cannot disclose information to the patient. One study indicated that this family involvement is problematic and that disclosure of information to the patient would be different if the family were not present.5 So why do physicians go to the family first before they talk with the patient? Traditionally, in Japan the individual is viewed as the socially embedded self and part of several groups ranging from the family to the
90
nation. It then follows that groups tend to make decisions, not individuals.6,7 This certainly is the case with the terminally ill elderly. Everyone wants to shield them from the truth of the diagnosis. Often the patient knows or at least suspects the truth but finds it difficult to speak of it under these circumstances. Japan is a society in which nonverbal messages tend to carry more weight than verbal ones, and this cultural factor further complicates the ethical issue of disclosure of information to the patient.7 Nevertheless, some health professionals in Japan are speaking out against nondisclosure, at least at bioethics conferences, and the research cited above supports the need for change. To date, however, this shift has not occurred.
INFORMED CONSENT The Japanese norm of nondisclosure renders little possibility of informed consent occurring with the elderly. In the West, informed consent is based on the ethical principle of patient autonomy, which emerged from the belief that individual rights historically originated in ancient Greece and were later reinforced by the Enlightenment, which emphasized the rights of the individual. These influences did not reach Japan. Westerners believe that competent adults have the right to make their own decisions. In Japan, however, these ideas are not strong and do not easily fit into its ancient and rich cultural tradition. Westernized Japanese people question the inadequacy of their own ethics, traditional definitions, values, and norms affecting health care decisions. However, this questioning is not necessarily true for most elderly people, who became adults when Japanese traditions held sway with little influence from the West. This possible generational difference creates interesting dynamics and raises current questions as to whether informed consent can be used with the Japanese elderly. Among the several problems facing Japan is how to deal with end-of-life decision mechanisms, such as donot-resuscitate orders and advance directives.8 When the patient does not have the necessary information or opportunity to enter into dialogue with his or her family and physician, informed consent becomes impossible. Very little has changed with this ethical problem, and nurses are caught in the middle.
OVERTREATMENT Overtreatment, a clinical problem confronting patients and their families, is also an ethical issue in the allocation of resources. Japan has a national health service, but even the second richest country in the world cannot afford to waste its health care resources. The interaction of nondisclosure to patients, the role of the family in decision-making, the role and status of the physician, and the potential for overtreatment come together and result in resource misuse.
Geriatric Nursing 2000 • Volume 21 • Number 2
Family members are in a difficult situation when faced with decisions that determine the length of life and quality of an elder’s death. Loss of face must be considered as a major cultural factor here. How would they think of themselves and how would they be seen by others if they acted in a manner inconsistent with Japanese values? Usually the easier decision for the family to make is to seek treatment for the patient, but often the treatment has no benefit and can increase pain and suffering. What if the patient tries to refuse further treatment? Would this refusal be taken as lack of gratitude toward the family who is doing what they believe to be best? Some elderly patients can talk with their family members and refuse additional treatment at the end of life. Although this decision may be difficult for the family, they will accept it, and treatment will cease.
protect patient rights nor clear-cut ethical principles to guide them. They grapple with their own notions of ethics within their own culture. Although Japan certainly has ideas of right and wrong and an extensive value system developed over many centuries, these ideas and values have not been explicated into a body of ethical guidelines for health care decisions. The question of what the nurse should do in these complex situations with elderly patients is only a part of the larger social fabric that is being closely examined by the Japanese. While these ethical questions remain open to discussion, debate, and disagreement, we must remember that the Japanese are masters at creating intricate and beautiful fabric. This ability can extend to the social fabric of their dynamic society as well. REFERENCES
ETHICS, THE ELDERLY, AND JAPANESE NURSING Japanese nurses often find themselves between the patient and the family, the family and the physician, or the patient/family group and the physician. Sometimes patients turn to their nurse to indirectly or directly ask about their diagnosis and progress. At other times, patients let the nurse know that they do not want more treatment, although the family wants it to continue. What should the nurse do in these situations? American nurses can turn to such ethical principles as patient autonomy, do no harm, do good, and truthtelling for assistance in developing an answer to this question. In addition, nurses have virtue ethics and caring ethics to help them reach an answer to their ethical problems. Finally, laws based on these ethical principles protect the rights of patients. Japanese nurses, however, have neither laws that
1. Sayle M. The social contradictions of Japanese capitalism. The Atlantic Monthly 1998 June:84-94. 2. Kono F, Sakashita T, Kihara N. A survey regarding death and terminal care. Nihon Kango Kenkyu-Gakkai Zasshi 1995;18:98. 3. Kubo A, Nakagawa K, Miyamoto Y, et al. Informed consent in the therapy of lung cancer patients. J Jap Soc Cancer Ther 1995;30:664-79. 4. Takahashi Y, et al. What do terminal patients with cancer desire? Gastroenterol Endosc 1991;33:14,88. 5. Asai A, Fukui T. Ethical issues in Japanese clinical settings in the 1990s: attitudes and experiences of the Japanese. Eubios J Asian International Bioethics 1997;7:39-43. 6. Rosenberg N, editor. Japanese sense of self. Cambridge: Cambridge University Press; 1992. 7. Lebra TS. Japanese patterns of behavior. Honolulu: University of Hawaii Press; 1976. 8. Konishi E. Nurses’ attitudes towards developing a do not resuscitate policy in Japan. Nursing Ethics 1998;5:218-27.
ANNE J. DAVIS, RN, PhD, and EMIKO KONISHI, RN, PhD, are professors in the Nagano College of Nursing in Japan. Copyright © 2000 by Mosby, Inc. 0197-4572/2000/$8.00 + 0
34/1/107129
Access to Geriatric Nursing Online now is reserved for print subscribers! Full-text access to Geriatric Nursing Online is available for all print subscribers. To activate your individual online subscription, please visit Geriatric Nursing Online, point your browser to http://www.mosby. com/gerinurs, follow the prompts to activate online access here, and follow the instructions. To activate your account, you will need your subscriber account number, which you can find on your mailing label (note: the number of digits in your subscriber account number varies from 6 to 10 digits). See the example below in which the subscriber account number has been circled: Sample mailing label
This is your subscription account number
***************************** 3-DIGIT 001 SJ P1 FEB00 J034 C: 1 1234567-89 U 05/00 Q:1 J. H. DOE, MD 531 MAIN ST CENTER CITY, NY 10001-001
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Geriatric Nursing 2000 • Volume 21 • Number 2
91
End-of-Life Ethical Issues in Japan Anne J. Davis, RN, PhD, and Emiko Konishi, RN, PhD
Abstract: This article discusses the endof-life ethical issues of disclosure of information to the terminally ill patient, informed consent, and overtreatment for the elderly people of Japan. These issues are placed within the cultural context of Japan, which is discussing and developing ways to deal with them. The ethical problems that nurses confront when they work clinically with elderly patients also are outlined. No consensus has been reached about the ethics of health care in Japan. (Geriatr Nurs 2000;21:89-91)
J
apan is one of the oldest societies on earth,1 and its elderly citizens live longer than any other population in the world. By 2010, 25% of the Japanese will be older than 65. As Japan prospered in the 20th century, the birth rate steadily declined to the present crisis point of 1.43 births per woman, well below replacement level. Two-thirds of women between 20 and 30 have never married. In 1997, the number of Japanese older than 65 exceeded the number of Japanese under 15. These demographic realities place great stress on the national health service and other social institutions. (For a more detailed description of this situation, see the GN article by Kawai in the May/June 1996 issue). Some of the problems with the elderly population are ethical issues at the end of life. This article describes disclosure of information to the terminally ill patient, informed consent, and overtreatment and briefly explains the cultural factors involved. The lack of laws and ethical guidelines for end-of-life decisions create great difficulties for clinical nurses. The Japanese often rely on situational ethics. That is, people prefer caseby-case decisions that rely on the physician’s and family’s discretion rather than universal ethical principles as guidelines. This preference is true not only for patient situations but also in many areas of Japanese life.
DISCLOSURE Disclosure of information remains the most debated end-of-life issue in Japan. The normal notification method is for the physician to approach the ter-
Geriatric Nursing 2000 • Volume 21 • Number 2
89
minally ill patient’s family and explain the situation to them. They then decide whether giving the patient information is harmful. In the name of doing good, the diagnosis and prognosis usually are withheld from the patient. When informally asked why this should be the case, Japanese health professionals often give three reasons: if patients are told this bad news, they will stop fighting, give up, and die or become depressed or commit suicide. Many Japanese consider the long-standing practice of withholding the truth from terminal patients to be appropriate in their culture. But research does not always support this view. Several studies about disclosure of cancer diWhen the patient agnosis focus on what the Japanese would want if they does not have developed cancer. In several studies focused on disclosure the necessary of information, most respondents said they want to be information or told their cancer diagnosis, but far fewer said that people general should be given opportunity to in this information.2 In other studies, more enter into than 80% of cancer patients who were told their diagnosis dialogue with said they were satisfied with being told the truth.3 Family his or her family members of cancer patients with advanced cancer reand physician, ported that 75% of these patients accepted the news of informed consent their diagnosis in a calm manner, and only one patient thoughts about suibecomes voiced cide.4 Although these studies present one picture of truthimpossible. telling regarding a serious diagnosis, the fact remains that few patients are given this information. When a physician first goes to the patient’s relatives, they are in a position to make decisions, including the one of whether the patient should know or not. If they give the usual response that the patient should not be told, the physician cannot disclose information to the patient. One study indicated that this family involvement is problematic and that disclosure of information to the patient would be different if the family were not present.5 So why do physicians go to the family first before they talk with the patient? Traditionally, in Japan the individual is viewed as the socially embedded self and part of several groups ranging from the family to the
90
nation. It then follows that groups tend to make decisions, not individuals.6,7 This certainly is the case with the terminally ill elderly. Everyone wants to shield them from the truth of the diagnosis. Often the patient knows or at least suspects the truth but finds it difficult to speak of it under these circumstances. Japan is a society in which nonverbal messages tend to carry more weight than verbal ones, and this cultural factor further complicates the ethical issue of disclosure of information to the patient.7 Nevertheless, some health professionals in Japan are speaking out against nondisclosure, at least at bioethics conferences, and the research cited above supports the need for change. To date, however, this shift has not occurred.
INFORMED CONSENT The Japanese norm of nondisclosure renders little possibility of informed consent occurring with the elderly. In the West, informed consent is based on the ethical principle of patient autonomy, which emerged from the belief that individual rights historically originated in ancient Greece and were later reinforced by the Enlightenment, which emphasized the rights of the individual. These influences did not reach Japan. Westerners believe that competent adults have the right to make their own decisions. In Japan, however, these ideas are not strong and do not easily fit into its ancient and rich cultural tradition. Westernized Japanese people question the inadequacy of their own ethics, traditional definitions, values, and norms affecting health care decisions. However, this questioning is not necessarily true for most elderly people, who became adults when Japanese traditions held sway with little influence from the West. This possible generational difference creates interesting dynamics and raises current questions as to whether informed consent can be used with the Japanese elderly. Among the several problems facing Japan is how to deal with end-of-life decision mechanisms, such as donot-resuscitate orders and advance directives.8 When the patient does not have the necessary information or opportunity to enter into dialogue with his or her family and physician, informed consent becomes impossible. Very little has changed with this ethical problem, and nurses are caught in the middle.
OVERTREATMENT Overtreatment, a clinical problem confronting patients and their families, is also an ethical issue in the allocation of resources. Japan has a national health service, but even the second richest country in the world cannot afford to waste its health care resources. The interaction of nondisclosure to patients, the role of the family in decision-making, the role and status of the physician, and the potential for overtreatment come together and result in resource misuse.
Geriatric Nursing 2000 • Volume 21 • Number 2
Family members are in a difficult situation when faced with decisions that determine the length of life and quality of an elder’s death. Loss of face must be considered as a major cultural factor here. How would they think of themselves and how would they be seen by others if they acted in a manner inconsistent with Japanese values? Usually the easier decision for the family to make is to seek treatment for the patient, but often the treatment has no benefit and can increase pain and suffering. What if the patient tries to refuse further treatment? Would this refusal be taken as lack of gratitude toward the family who is doing what they believe to be best? Some elderly patients can talk with their family members and refuse additional treatment at the end of life. Although this decision may be difficult for the family, they will accept it, and treatment will cease.
protect patient rights nor clear-cut ethical principles to guide them. They grapple with their own notions of ethics within their own culture. Although Japan certainly has ideas of right and wrong and an extensive value system developed over many centuries, these ideas and values have not been explicated into a body of ethical guidelines for health care decisions. The question of what the nurse should do in these complex situations with elderly patients is only a part of the larger social fabric that is being closely examined by the Japanese. While these ethical questions remain open to discussion, debate, and disagreement, we must remember that the Japanese are masters at creating intricate and beautiful fabric. This ability can extend to the social fabric of their dynamic society as well. REFERENCES
ETHICS, THE ELDERLY, AND JAPANESE NURSING Japanese nurses often find themselves between the patient and the family, the family and the physician, or the patient/family group and the physician. Sometimes patients turn to their nurse to indirectly or directly ask about their diagnosis and progress. At other times, patients let the nurse know that they do not want more treatment, although the family wants it to continue. What should the nurse do in these situations? American nurses can turn to such ethical principles as patient autonomy, do no harm, do good, and truthtelling for assistance in developing an answer to this question. In addition, nurses have virtue ethics and caring ethics to help them reach an answer to their ethical problems. Finally, laws based on these ethical principles protect the rights of patients. Japanese nurses, however, have neither laws that
1. Sayle M. The social contradictions of Japanese capitalism. The Atlantic Monthly 1998 June:84-94. 2. Kono F, Sakashita T, Kihara N. A survey regarding death and terminal care. Nihon Kango Kenkyu-Gakkai Zasshi 1995;18:98. 3. Kubo A, Nakagawa K, Miyamoto Y, et al. Informed consent in the therapy of lung cancer patients. J Jap Soc Cancer Ther 1995;30:664-79. 4. Takahashi Y, et al. What do terminal patients with cancer desire? Gastroenterol Endosc 1991;33:14,88. 5. Asai A, Fukui T. Ethical issues in Japanese clinical settings in the 1990s: attitudes and experiences of the Japanese. Eubios J Asian International Bioethics 1997;7:39-43. 6. Rosenberg N, editor. Japanese sense of self. Cambridge: Cambridge University Press; 1992. 7. Lebra TS. Japanese patterns of behavior. Honolulu: University of Hawaii Press; 1976. 8. Konishi E. Nurses’ attitudes towards developing a do not resuscitate policy in Japan. Nursing Ethics 1998;5:218-27.
ANNE J. DAVIS, RN, PhD, and EMIKO KONISHI, RN, PhD, are professors in the Nagano College of Nursing in Japan. Copyright © 2000 by Mosby, Inc. 0197-4572/2000/$8.00 + 0
34/1/107129
Access to Geriatric Nursing Online now is reserved for print subscribers! Full-text access to Geriatric Nursing Online is available for all print subscribers. To activate your individual online subscription, please visit Geriatric Nursing Online, point your browser to http://www.mosby. com/gerinurs, follow the prompts to activate online access here, and follow the instructions. To activate your account, you will need your subscriber account number, which you can find on your mailing label (note: the number of digits in your subscriber account number varies from 6 to 10 digits). See the example below in which the subscriber account number has been circled: Sample mailing label
This is your subscription account number
***************************** 3-DIGIT 001 SJ P1 FEB00 J034 C: 1 1234567-89 U 05/00 Q:1 J. H. DOE, MD 531 MAIN ST CENTER CITY, NY 10001-001
Personal subscriptions to Geriatric Nursing Online are for individual use only and may not be transferred. Use of Geriatric Nursing Online is subject to agreement to the terms and conditions as indicated online.
Geriatric Nursing 2000 • Volume 21 • Number 2
91