- Atsushi Asai, MD and Tsuguya Fukui, MD
Department of General Medicine and Clinical Epidemiology, Kyoto University School of Medicine, Kyoto University Hospital
Sakyo-ku, Kyoto, 606-01 Japan
E-mail: email@example.com Eubios Journal of Asian and International Bioethics 7 (1997), 39-43.
Recently there has been a number of studies on clinical practice in Japan. Two well-published "euthanasia" cases of the 1990's have attracted public attention to physician-assisted death (1, 2, 3). These cases triggered a hot debate about the ethical appropriateness of mercy killing and significance of informed consent. Cases involving withdrawal of artificial food and nutrition and withholding of antibiotics were reported on a press in 1997. These reports questioned a lack of advance directives or substituted consent of the patient's family (4, 5). The HIV epidemic has made Japanese physicians aware of the patient's right to medical information and non-discriminated access of care for such patients (6). Undoubtedly, these problems elicit public interest in ethical issues in the clinical setting in Japan.
In the 1990s, researchers conducted several clinical studies about ethical issues in Japan including truth telling and terminal care. Some papers give us an insight about what Japanese people would want, and a few provide us with a picture of what they have done or are doing. Few Japanese researchers have however, tried to review and summarize published research articles regarding ethical issues in the clinical setting to grasp current situations in this regard.
In this paper, we would like to review published studies in both English and Japanese, which were written in the 1990s. We have two main purposes: First, we will reveal the current situation in ethical decisions in Japan based on mainly quantitative and qualitative research. Articles of newspapers and essays will be used when data from research papers is not available. Second, based on the summary, we would like to deliberate about what kinds of ethical issues should be deeply discussed in the clinical setting in Japan to improve such decisions.
Data were collected through MEDLINE and
Japan Centra Revuo Medicina (Igaku Chyuo Zasshi). Articles were
excluded if their research methods or definition of terms used
in questions were obscure or ill-defined.
2. Data from published articles
2.1 Disclosure and medical decisions
Truth telling is a long-standing ethical dilemma in Japan and many have been arguing its appropriateness in Japanese culture. Several research regarding disclosure of cancer diagnosis mainly focused on what the Japanese would want to do if they developed cancer.
A survey on general public who visited outpatient clinic and patients undergoing endoscopy in a university hospital revealed that 72% of 221 outpatients and 83% of 210 who had endoscopy would want to be informed of a diagnosis of cancer, while only about one-third of them thought that the truth should be disclosed to cancer patients in general (7). Several other studies also showed similar outcomes: Approximately 60% of patients would want to know the truth, while about 20 to 30% of them would want to inform their family when they develop a cancer (8, 9, 10). Some studies showed attitudes of Japanese physicians regarding informed consent. A survey on physicians by the MHW in 1990 revealed 40% of 1600 respondents deemed it appropriate that physicians decide how much medical information should be given to a patient, while only 26% responded that they would give as much medical information as a patient wants (11). An another survey on physicians who are working at either university hospital or city hospital revealed that 21% of 654 respondents believed that the decision to give medical information to patients should depend on the physician's individual judgment in assessing whether disclosure is advisable (12).
In 1990s', several surveys were conducted on actually ill patients, the aged, and especially, patients who have known that they have some kind of cancer about their experience. A national survey on physicians showed that 10% of 1600 responding physicians disclosed a diagnosis of cancer to their patients (11). A recent study also showed in 1994 that 13% of 179 physicians surveyed in one prefecture disclosed the diagnosis of cancer (7). On the other hand, a survey on patients with gastric cancer conducted at one of medical institutes which is specialized for oncology revealed that 81% of 170 patients had the diagnosis disclosed, though only 25% were told the truth if their cancer was inoperative in 1994 (13).
Some studies investigated satisfaction of patients regarding truth telling. More than 80% of cancer patients who were informed of a diagnosis of cancer reported that they were satisfied with being disclosed of the truth (14, 15). However, much fewer (21%) considered disclosure of a diagnosis of cancer to their family when one of them had it preferable (14).
Family members of patients who developed advanced cancer reported that 75% of such patients could accept serious diagnosis calmly and no one but one thought of committing suicide (16). 65% considered truth telling of cancer diagnosis necessary and 59% were satisfied with the outcomes of informing a true diagnosis. Both of patients and family members responded that the sooner a diagnosis of cancer is informed, the better. Physicians interviewed in one study suggested that a major reason not to disclose a diagnosis of cancer was patient's family's wishes not to do so (73%), physicians' discretion (15%). and patient's wishes not to be informed of the truth (4%) (15).
A recent survey in 1995 revealed that 60% of 388 patients with cancer were satisfied with being informed of a diagnosis of cancer and 27% responded that they had to know the truth, and only 2% regretted to be disclosed it. The same study also showed that how much they would want their outlook: 91% would want to be told when their cancer recurred and only 3% would want not, and 80% would insist to know the truth even if their family members would request physicians not to inform the diagnosis to themselves, while 13% would yield their desire to their family (17). 93 families whose relatives were deceased showed reported cancer patients tended to be less convinced with the explanation made by their physicians than those with benign illness (18).
Recent studies indicate attitudes of Japanese public and patients towards self-determination in clinical settings. One survey on patients with lung cancer admitted in a city hospital revealed that 77% deferred the final decision regarding treatment plan regarding cancer chemotherapy to their physicians (15). Japanese lay persons also showed that most of them would want their physicians to respect their wishes when their family opposed it. One survey regarding decisions about life-sustaining treatment revealed that more than 90% of 300 lay persons responded that they would want to decide medical treatment at the end of life and few would leave such decisions to their physicians or even to their families, while less than one-fifth of the respondents thought that a physician should respect decisions of patient's family when patient and family disagree about how to plan life-support (19). Another study on patients showed that about half would want their physicians to make a final decision for medical care, independent of the seriousness of diseases (20).
These studies are suggestive that 1) a
majority of informed patients with cancer were satisfied with
disclosure and rarely became desperate by the serious information,
2) attitudes and behaviors of physicians are diverse, depending
on medical institution or individual physicians, 3) attitudes
in this regard are significantly different between patients and
physicians, 4) patients have a double standard about truth telling
to themselves and their family members for some reasons, 5) preferences
of the Japanese toward self-determination about medical care are
diverse, 6) family wishes not to tell the truth to patients could
be a major cause of the non-disclosure practice.
2.2 Advance Directives
In 1992, the Bioethics Council of the Japan Medical Association officially declared first that a physician should respect patient autonomy and a written advance directives of a patient with terminal disease should be followed. When advance directives of incompetent patient are not available, a family or a close friend can make a substitute judgment whether to discontinue life-sustaining treatment (21). An organization consisting of interdisciplinary intellectuals agreed with this recommendation (22). These recommendation indicates that physicians have to respect patient's wishes about medical care at the end-of-life. They also declared that there may be no legal problem not to resuscitate patients based on their wishes not to do so despite no explicit written law in Japan.
At this moment, more than 75,000 people have participated in the Japan Death with Dignity Association and had a living will (23). An investigation conducted by the Japan Death with Dignity Association showed that almost all the physicians (96%) respected presented written advance directives, only 4% refused to follow them. For some reasons, one-third of patients who belong to the Japan Death with Dignity Association didn't present their will to their physicians (23)
In 1990's, several studies regarding advance directives were conducted. A public opinion by the Ministry of Health and Welfare revealed that 85% of 3030 respondents thought that usage of advance directive including a written document and explicit oral expression would be preferable and about half thought that advance directives should be legally regulated (24). A majority of physicians also considered patient's advance directives should be respected, while only 7% of them insisted life-prolongation regardless of advance directives (11). A recent survey on physicians working in university hospitals showed that 87% of physicians would follow patient's advance preferences about life prolongation and consult a designated surrogate if Japan had a law regulating advance directives and proxy. The main reasons to do so were to respect the patient's will and the right for medical care (25).
Several barriers to respecting advance directives were also pointed out. All of the physicians participating in an interview regarded advance directives desirable, while they expressed concern that it would be difficult to forgo or discontinue life support based on a patient's advance directives, particularly when the patient's family opposes the directives (26). A study on nephrologists about termination of hemodialysis also suggested influence of family upon physician's decision. It showed that 88% of 72 Japanese physicians would withdraw hemodialysis from an incompetent patient if a patient left advance directives expressing his or her wishes to do so and family members agreed with his or her advance directives. While, less than one-fifth would discontinue hemodialysis from such a patient if family member insisted to continuing hemodialysis despite the patient's advance directives not to do so (27).
Both the general public and physicians
seem to support use of advance directives for medical care, but
current situations about how often advance directives are presented
to physicians or they are respected are not clear at present.
These results also suggest that patient's desires about death
with dignity may not be guaranteed when family members or physicians
insist life prolongation.
2.3. Do-Not-Resuscitate orders (DNR)
A few studies tried to grasp attitudes and experiences of patients and physicians in DNR orders. a survey on lay persons, physicians, and nurses showed that more than 90% of subjects accept DNR orders in general; 79% of all subjects thought it acceptable not to attempt to resuscitate a terminally ill patient with cancer, 73% agreed DNR orders for a brain-dead patient regardless of their background (28). A study of critical care physicians revealed that 70% of 307 respondents had experienced carrying out DNR orders, but half of them did not write the order in the medical chart: 97% of respondents thought that DNR orders were necessary for death with dignity or to avoid futile interventions. Almost all responding physicians thought that patient's wishes or family's opinion about CPR should be taken into account, while 85% did not consider preferences of patient indispensable to decide (29). In another survey 90% of physicians experienced ordering a DNR in another survey (30).
A study conducted at a teaching hospital in Japan showed that 72% of 67 inpatients who died in the hospital had DNR orders and only three patients participated in discussion about DNR orders. The observance of DNR orders were various and some resuscitation procedures were performed despite explicit orders not to do so, depending on whether a patient's family or an attending physician was at the bedside or not at the time of cardiac arrest (31). The group interview of physicians revealed whether there is a prior discussion with family, whether or not the patient's family is present at the bedside, whether they want to be at the bedside at the time of patient's death and affecting physicians' decisions (26). Investigation on approximately 700 deceased patients in the past 10 years conducted in a general hospital provided us with clue of current situation of medical care at the end of life in Japan (32): 44% of them died of cancer. At the time of cardiopulmonary arrest, 14% underwent intubation, 6% had mechanical ventilation, and of the patients who died of cancer, 7% underwent intubation and 3% of underwent mechanical ventilation. Vasopressors were used for 64% and CPR were performed for 78% of all patients regardless of the underlying illness.
This information is suggestive that 1)
most of lay persons, nurses and physicians consider DNR acceptable
in general, 2) many physicians actually ordered DNR in various
and informal ways, 3) patient's wishes in this regard is not considered
indispensable and physicians and family usually make decisions,
4) family's wishes to be at the bedside at the time of patient's
death have tremendous influence on physicians' decisions, 5) Data
from nation-wide surveys about actual situations is not available.
2.4. Other life-sustaining interventions
There are many important ethical issues other than advance directives and DNR orders in terminal care or care for critically ill patients. Preferences towards life-sustaining treatment, distinction of withholding and withdrawal, or extraordinary and ordinary care are one of them. Agreement or disagreement of involved parties regarding care is also a major problem. Outcomes of several studies follow.
A recent public poll and a survey on patients showed that about 80% of respondents would want to discontinue life-prolonging interventions if they had an incurable, painful terminal disease. In addition, 31% of respondents considered it acceptable to discontinue all life-support (24, 33). A survey on inpatients in three hospitals in Japan revealed that 70% of 200 patients would want to die in home without aggressive life-prolonging interventions when they were terminally ill and two thirds of them would want sufficient pain control rather than life-prolongation (34). Younger people at the age of 20s to 30s shared the same opinions (10).
On the other hand, an interview with physicians revealed some barriers to respecting patient's wishes about terminal care. It showed that physicians and patients' family members usually make decisions about life-sustaining treatment, while the patients' wishes are unavailable or not taken into account; both physicians and family members tend to consider withholding or withdrawing life-sustaining treatment as abandonment or even killing (26). A comparative survey conducted in the US and Japan also suggested that Japanese physicians would tend to treat terminally-ill patients significantly more aggressively than Japanese-American physicians. Most Japanese physicians would recommend blood transfusion (74%), TPN (67%), vasopressor (61%) for terminally ill patients. Significantly fewer physicians would want these interventions for themselves. In addition, 36% of the responding Japanese physicians would override the patient's explicit wishes to discontinue life-support (30). The recent study showed that only 30% of the responding physicians would discontinue life support when a patient explicitly wanted them to do so regardless of wishes of family members (23).
Finally, one study conducted in 1995 demonstrated
disagreement between nurses and physicians regarding medical decisions
at the end of life (35). Sixty-four percent of the 209 responding
nurses have experiences not to be satisfied with physician's attitudes
or behaviors as a whole. Among them, 83% were not convinced of
physicians' strategies to take care of terminal patients, 74%
could not agree with physicians about workup at the very end of
patient's life, and 71% complained about physicians' explanation
to their patients which were likely to be too difficult to understand.
Half of the nurses felt that physicians relied on nurses about
psychological care of patients too much. Insufficient communication
between them about patient care was also suggested. These articles
suggest that 1) a majority of lay persons and patients prefer
to avoid unwanted life sustaining treatment and support death
with dignity, 2) physicians may prefer aggressive life support,
and 3) Nurses and physicians may disagree about what should be
done for terminally ill patients.
2.5. Life prolongation of patients with persistent vegetative states (PVS)
Compared to care for terminally ill patients, ethical issues of care for patients with PVS have not attracted sufficient attraction previously. In the 1990's, however, several studies were conducted and revealed attitudes of the Japanese in this regard. A public poll showed that 55% of 3030 responding lay persons would want to discontinue life-prolonging interventions if they developed PVS, while 10% would want to continue them. More than half would want to discontinue "extraordinary" intervention like mechanical ventilation, but continue "basic" care including artificial food and nutrition. On the other hand, 31% thought it is acceptable to withdraw all of life-support (24). A study investigating the aged whose average age is 72 also showed that only 9% of 67 respondents would want to sustain their life when they developed persistent vegetative state or brain death (33). Another survey showed that there was no significant differences among lay persons, nurses, and physicians, and a majority of them considered DNR for patients with PVS acceptable (28).
A survey of 300 healthy people (255 university students at the mean age of 21 and 51 general public at the mean age of 50 ) revealed that they would want to have artificial food and hydration (AFH) for malnutrition and dehydration (24%, 8%), antibiotics for serious pneumonia (20%, 16%), and vasopressor for shock (16%, 8%), and blood transfusion for massive bleeding (21%, 10%), when they are in PVS. As for DNR, 13% of the responding university students and 6% of the lay persons would want to have CPR for cardiac arrest when they are in PVS. (19)
These studies are suggestive that more
than half of people surveyed would want to discontinue life support
in general, but their preferences could differ depending on kind
of intervention. Less than one-third of people surveyed would
want to discontinue all interventions including AFH, but other
may desire it or unable to decide when they develop PVS. There
was no data regarding experiences of medical professionals or
2.6. Euthanasia/Assisted suicide
In 1995, Yokohama court presented 4 essential prerequisites for active euthanasia (23). They included: a patient is experiencing intractable physical suffering, a patient must be terminal and patient's death is unavoidable, every method to alleviate the patient's physical suffering must have been exhausted and no alternative is available, and the patient explicitly expresses desire to terminate their life. The survey (23) previously mentioned revealed attitudes of Japanese physicians toward active euthanasia. 19% of 273 responding physicians considered active euthanasia unacceptable under any circumstances, 10% thought it acceptable if all of the 4 prerequisites are met, and 4% thought active euthanasia can be permissive in some cases even if all of the prerequisites are not met. As for termination of terminal patient's life who are irreversibly unconscious and leave no explicit desire to terminate his/her own life, 76% thought it unacceptable, while 14% considered it acceptable. A study in 1993 showed that 76% of all respondents considered euthanasia acceptable. Among them, 90% of lay persons, 80% of nurses, and 67% of physicians agreed with active euthanasia (28).
Another study on university physicians
also showed their unwilingness to terminate a patient's life without
the patient's explicit wishes to do so and their tolerance of
hastened death as a result of double effect of opioids. They
also tended to accept death with dignity , but not active euthanasia
and wished to have more social discussion and control in this
regard (25). There are very limited data available, and cannot
conclude anything about attitudes, especially experiences of active
euthanasia in Japan. Lay persons might think active euthanasia
is more acceptable than physicians do.
2.7. Ethical issues regarding HIV/AIDS
The Ministry of Health and Welfare's treatment manual requires prior consent from the patient before HIV testing and requires that the patient be informed of his/her result. However, it also advises physicians to assess the patient's "state of mind and personality" before deciding when and how to explain test results (36). It also addressed the physician's duty to care such patients. One study showed that less than 20% of about 120 facilities were prepared to care for those with HIV/AIDS (37). Situation regarding HIV care seems, however, to be improving. A national survey on 2400 medical institutions including community and university hospitals suggested that 42% of 914 institutions would be willing to provide care to people infected HIV. 30% of the responding institutions had seen patients with HIV, and about 78% of them could provide care to such patient calmly (38).
Results of an investigation on regarding informed consent policy in HIV testing showed 67% of 842 hospitals performed tests only after receiving patient consent, 27% sought consent on a case by case basis, and 6% required no consent whatsoever. These results indicate that one third of Japan's hospitals may ignore informed consent when conducting HIV testing (39). A nationwide survey regarding attitudes of HIV/AIDS on 646 physicians and 767 nurses revealed that, for both parties, the fear of HIV/AIDS increased the risk perception of occupational HIV infection, which in turn moves the attitudes toward HIV/AIDS to more negative direction. A survey on dentists also showed that 17% of 289 dentists were willing to care for patients with AIDS or HIV infection, while 42% answered that they were reluctant to provide such patients with care, and 40% responded undecided.
These data did not tell us how health
care worker respond to persons or patients with HIV infection
at this moment. They are suggestive, however, that it is possible
that some physicians or hospitals may refuse to provide such patients
with care or perform HIV testing without informed consent.
2.8. Education in medical ethics
There are several published articles investigating the present situation in medical ethics education in Japan. A survey on 13 medical schools selected on convenient basis conducted in 1990 showed that medical ethics were taught by a full-time teacher at 3 schools and that the duration of the courses ranged from half to one year. Many of the surveyed schools gave several-hour lectures to medical students in the clinical year (42). The latest survey on 80 deans at medical schools in Japan in 1995 was conducted, and 89% of 63 medical schools are teaching medical ethics in some lectures, but only one-third are teaching medical ethics as an independent subject. Medical students in the clinical year are learning medical ethics at less than one third of responding medical schools. It was also reported that there are no opportunities for Japanese medical teachers themselves to learn medical ethics and its teaching methodology, and suggest that many respondents were not satisfied with current education in ethics in their own medical school (43). An article published in one of the most prestigious Japanese newspapers reported that many professors in medical school do not consider that ethics education including education about terminal care important (44).
Our investigation failed to find out other
research articles in this regard. Data of education in medical
education were not sufficient at present. Especially there is
no data what kind of ethics education is actually given to physicians
in clinical settings. These surveys suggest, however, that more
comprehensive and interdisciplinary education in medical ethics
should be developed.
3. Summary of our review and new questions raised to be answered
We reviewed articles regarding ethical issues in the clinical setting in Japan written both in English and Japanese. Review of these articles revealed we still need more information, that there is a diverse range of qualities of study design, and limited generalizability of presented data in articles. There are problems of selection bias, sample size, and response rate. Selection of patients surveyed and medical institutions could significantly bias the outcomes. Compared to studies regarding attitudes or opinions, those showing their experiences are fewer in quantity.
While we recognize these problems to speculate on current ethical decision making being made in the clinical settings, the articles reviewed undoubtedly demonstrate some tendencies. First, policies of medical institutions and attitudes of health care workers are diverse. Second, desire of patients and lay persons could be different from those of physicians: the latter can be more conservative. Third, patient's family play significant roles in clinical settings and their opinions affect medical decisions a physician makes. Fourth, patients' preferences may not be guaranteed because of physicians' attitudes or family's wishes. Finally, desire of the Japanese to self determination in the clinical settings are not homogeneous. These tendencies lead us to more new questions about ethical decision making in Japan.
3.1. Perception of Japanese patients about desirable physician-family-patient relationship
Our review suggests diverse and inconsistent policies of physicians and hospitals. Japanese physicians, even young residents under training, seem to prefer case-by-case medical decisions relied on physicians' professional discretion rather than universal guidelines. Some patients prefer to make the final decision themselves and others want their physicians and family to do it for them. Current decision making process usually prioritizes decisions made by physicians or patient's family rather than these of patients when they have serious medical problems and no explicit guideline exists in Japan in this regard (45). The family of patient is usually considered as one who knows the patient most and who tries to take care of them better than any others (46). It is also argued that the majority of Japanese people are still notably less individualistic than are Westerners and the personality of Japanese is not something that belongs to an individual, but rather something which belongs to the family or society (47). American observers who are health care providers pointed out that Japanese society highly values harmony (avoidance of conflict), interdependence, and indirect communication pattern (suppressed real intentions). Japanese ethical decision making is situation-bound, based on the complex cultural rules of relationship and interdependency. Decisions are not made ahead of time because the situation is unknown, and ethical dilemmas are resolved depending on the variables at the time (48).
Under these circumstances, the following questions for Japanese patients are raised: 1) would Japanese patients expect all physicians to behave in the same manner, or is it acceptable that their physician decide on situation-bound and case-by-case basis? 2) what role would Japanese patients want their physicians to act: friend, teacher, or guardian, or technician? 3) would they want their physicians and family members to guess their wishes without explicit communication? 4) would they want their physicians and family members to evaluate their capacity to endure the burden of a bad news, and in that case, what patient's character would they want to be used? (45), 5) what role in medical ethical decision making would Japanese patients want their family to take? Is disclosing medical information to patient's family first a breach of confidentiality or ethically acceptable for patients themselves? 6) whose opinions would Japanese patients want to have prioritized to decide medical care when disagreement occur between them and their family?
All of these questions regarding patients' preferences should be asked when we consider the appropriateness of ethical choices we make.
3.2. Patient's wishes in favor of their family
Several papers suggest that whether to initiate or continue CPR or other life-prolonging interventions is often decided by family desire or opinions, and physicians tend to prioritize family's decisions rather than these of patients. It can mean medical care for family members may not be uncommon. Then, several questions are raised as follows. 1) would Japanese patients want their physicians to follow family's desire not to withhold or withdraw life prolongation? 2) would Japanese patients have any troubles to undergo futile treatment to make their family happy? 3) do Japanese patients care about medicine they will have after they are irreversibly unconscious (self-determination when incompetent)?, 4) is it ethical in Japan for physicians to resuscitate arrested patient until patient's family arrives at the bed side, or should we override patient's or family's request not to stop?
To answer these questions, we should carefully
take not only patients' wishes for themselves but also their wishes
in favor of their family into consideration. We must not forget
to ask them their desire to meet family's satisfaction even at
the mercy of their own satisfaction. On the other hand, physicians
should consider their primary duty in health care and deliberate
if it is ethical for them to respect all Japanese patients and
family want or would want.
In conclusion, there is a lack of valid information about attitudes and experiences of the Japanese regarding ethical decision making and further research should be conducted to grasp current situations and answer many unanswered questions we raise. It can be said that no ethical issue exists if all people and parties including society agree with one decision or policy for a particular ethical problem. In the clinical setting, disagreement often causes ethical dilemmas. Therefore, using well-designed study, we have to reveal ethical disagreement among all parties involved. Then, based valid information, we could start to deliberate what is ethically appropriate and what is proper patient-family-physician relationship in Japan. What we can do is to try to know and do what satisfies all of Japanese patients, their families, and medical professions without relying on imported principles of Western bioethics or traditional paternalistic, family-centered decision making process.
Although we do not have an immediate answer
about how to do it in the moment, it is urgent task for all parties
involved to establish appropriate ethical decision making process
for the Japanese themselves.
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