Many industrialized countries face ethical issues concerning terminally ill patients focused on such topics as rights, duties, and obligations of patients, families, health professionals, and society at large. Japan is no exception and some urgency surrounds these issues given recent demographics. The elderly now constitute 15.7% of the population and by 2025, this figure will reach 27.4%. Furthermore, the government predicts that this trend will continue for at least another century (1).

This paper reports responses to selected open - ended questions taken from a larger study (2). Specifically, these questions sought to ascertain the major ethical problems in Japan with terminally ill patients. Corollary questions focused on the reasons and remedies for the major ethical dilemmas. Based on previous findings, the researchers anticipated that information disclosure to the terminally ill and the lack of agreed upon ethical guidelines appropriate to Japan would be mentioned so they included questions on these topics as well.

The Sample, Method and Limitations

Data were collected from nurses attending an ethics conference and a more diverse population attending another ethics conference so obviously this is not a random sample but one in which individuals already have some concern about ethical issues in Japan's health care system. The total N of 98 comprises 53 nurses, 21 physicians, and 24 non-health professionals. Due to the small numbers and the nature of the sample, generalization from the findings remains problematic.

Literature Review

Researchers have written many reports and articles about the elderly in Japan. According to a computer search, between 1993 - 1998, 17,666 articles, mostly written in Japanese, focused on the elderly but of this number only a few dealt directly with death and dying issues. While the elderly are not the only group of patients who die, as might be expected, they count for most of the deaths in Japan.

Findings

A. Major Ethical Problems, Reasons For and Solutions

In responding to the questions found in Tables 1, 2, and 3, rarely did anyone give one simple answer. Rather, they viewed the socio-ethical situation of the terminally ill as complex and requiring multiple answers. Such answers included related phenomena such as patients' right to know and informed consent or being terminally ill in a hospital and the lack of alternatives to hospital care. At times the respondents listed several factors, not so obviously connected, but important in terminal care. The reported major ethical problem in terminal care showed similarities and differences across the groups. These data, presented according to frequency of response, can be found in Table 1.

Table 1: Major Ethical Issues given in Terminal Care

R.N. M.D. Other

N = 53 N = 21 N = 24

Patient - lack of information, autonomy, informed consent

46(87%) 11(52%) 7(29%)

Family - communication problems. Family role creates problems

10(19%) 6(29%) 10(42%)

H.C. Professionals - paternalism, lack of skills & knowledge to tell /deal with terminally ill patient, difficult to know patient intentions, communication problems

6(11%) 7(33%) 3(13%)

Health System - lack of ethical guidelines & attention to dying patient in hospital, lack of hospital alternatives

9(17%) 0 0

No response 8(15%) 2(10%) 1(4%)

The reasons they gave for their perceived major ethical problem(s) again shared similar but slightly different perceptions across groups and are presented in Table 2. As to what changes would lessen or eliminate the major ethical problem, the groups produced various but logical responses given their definitions of the ethical issues. Table 3 shows these responses.

Table 2: Reason For Major Problem

R.N. M.D. Other

N = 53 N = 21 N = 24

Health Professionals education & sensibility ( treat = best), M.D. Paternalism & focus on disease

20(38%) 6(29%) 13(54%)

Lack of individual rights & notions of family obligations to have treatment

24(45%) 8(38%) 4(17%)

Traditional Japanese cultural values

12(23%) 6(29%) 7(29%)

Lack of public education re. Issues & lack of hospital alternatives

5(9%) 0 2(8%)

No Response 8(15%) 2(10%) 3(13%)

Table 3: Changes Needed to Reduce Major Problem

R.N. M.D. Other

N = 53 N = 21 N = 24

Education of health care Professionals re. Ethics and patient rights

22(42%) 5(24%) 10(42%)

Public education on issues

21(40%) 3(14%) 6(25%)

Real informed consent patient and not just to family

11(21%) 8(38%) 8(33%)

Establish trustful relationships among patient, family, & health professionals

13(25%) 0 2(8%)

Reform medicine to be patient centered

3(6%) 0 0

Change law 0 2(10%) 0

No response 9(17%) 2(10%) 2(8%)

Table 4: Japanese Present Ethical Guidelines

R.N. M.D. Other

N = 53 N = 21 N = 24

No answer 30(57%) 7(33%) 5(21%)

There is no Japanese ethics

14(27%) 2(10%) 4(17%)

Paternalism - doing good TO patient

9(17%) 6(29%) 4(17%)

Situational ethics 2(3%) 0 0

Confidentiality 2(4%) 0 0

Life is precious 2(4%) 1(5%) 0

Do no harm 0 2(10%) 0

Table 5: Japanese Future Ethical Guidelines

R.N. M.D. Other

N = 53 N = 21 N = 24

Develop patient autonomy

21(40%) 10(48%) 8(33%)

Develop Japanese ethics

0 2(10%) 2(8%)

Integrate western principles & Japanese ethics

13(25%) 0 0

No response 21(40%) 2(10%) 3(13%)

B. Ethical Guidelines

One of the most revealing findings has to do with questions of ethical guidelines in Japan. Specifically, one question focused on present Japanese bioethics with terminally ill patients and the other asked what Japanese bioethics should serve as guidelines in future terminal care. Table 4 presents data about the present day situation and Table 5 presents data about possible future Japanese bioethical guidelines.

C. Information Disclosure

These findings on informed disclosure, presented in broad strokes, show that the great majority in each group said that in general terminally ill patients should be told their diagnosis and prognosis. However, they also emphasized the importance of knowing the patients true intentions. They made many comments about the patients right not to be told and not to know using the phrase, patients differ from one another. Information was not to be forced on all patients. While the right to know and the obligation to tell were the preferred ethical values, they were not something to be taken for granted and exercised in all cases. A few people in the nursing and non-health professional groups said that patients know about their diagnosis and prognosis even if they are not told. Only a small minority of physicians said that patients cannot cope with being told their terminal status. And only a small number in the nursing group mentioned that telling or not telling influenced the nature of the relationship between the patient and the family or health professionals. While each group voiced concern about patients having information regarding their illness so they could spend the rest of their life as they wanted, nurses expressed more of this concern than did the other two groups. When asked if they supported patients refusal of treatment that might shorten their lives, both physicians and nurses said they would do so. Only about half in each group had any clinical experience with such a refusal.

Discussion of Findings

The combination, non-disclosure of diagnosis and prognosis to patients, the lack of patient autonomy, and the lack of informed consent was viewed as the major constellation of ethical problems by most of the nurses, about half of the physicians, and slightly more than one - third of the non-health professionals. Although problems in family role and communications, health care professionals role and lack of knowledge, and problems in the health care system are mentioned as factors contributing to ethical issues in terminal care by all groups, these problems are not mentioned as often as the lack of patient autonomy issues except by the non-health professional group. This group lists family communication problems more frequently than other ethical issues. They also see the health professionals role and lack of interpersonal skills as less of a problem than do the health professionals. This difference between the professionals and the lay persons is not surprising given the usual relationship of these groups to the terminally ill situation. That two-thirds of the nurses and somewhat less than half of the non - health professionals see health system problems that influence terminal care and no physician does, raises questions for further study.

The reasons the groups gave for the major ethical problem again show a difference between health professionals and non-health professionals. However, if the three most mentioned reasons are taken together, the majority in each group listed the reasons for the major ethical problems as follows: (1) omissions in health professional education and the perceived value of medical treatment in terminal care, (2) lack of individual rights coupled with notions of family obligations , and (3) the socio-ethical framework provided by Japanese cultural values. Together these are powerful forces in terminal care that can inhibit alternative ways of thinking about the patient and the inevitability of each persons death.

Addressing the changes needed to reduce or eliminate the ethical issues in terminal care, nurses placed a heavy emphasis on professional and public education. To some extent, all the groups thought to have genuine informed consent would help in these situations. While about one-fourth of the nurses saw the need for changes in patient, family, and health care professionals relationships, no physician and a very few non-health professionals mentioned this as a needed change. This difference may reflect the role and functions that nurses have in terminal care in which they can observe these relationships over time.

When indicating what they thought served as ethical guidelines now in Japan, most of the respondents in each group either said that Japan has no bioethics or that they don't know of any Japanese bioethics. The next most mentioned guideline was paternalism usually associated with the physician but also found in the health system itself. The underlying intention of paternalism, do no harm to patients by making decisions for them to ease their burden, can be supported by traditional Japanese values.

If others involved with end of life issues agree with the lack of Japanese bioethics to guide clinical decisions, then the need to develop a bioethics framework is strongly apparent and essential. Ideas as to what could serve as future ethical guidelines focus mostly on the development of patient autonomy. Almost half of the nurses mentioned patient autonomy as important for future guidelines, but the same number gave no response to this question. While difficult to know what this lack of response means, perhaps it shows that for some nurses, patient autonomy cannot become a major value in Japanese future ethical guidelines. Or perhaps they have not given this question much serious thought and simply do not have a response. One-third of the nurses would integrate western principles and Japanese ethics. Neither of the other two groups mentioned this as a possibility. Again, it is difficult to understand the meaning but one might speculate that the principles of do no harm and do good could be re-conceptualized within the Japanese context to guide end of life decisions. This might assist in developing ethical oughts that can transcend the cultural is of Japanese daily life for these older patients. Then the culturally defined norms used to guide usual social interaction would change in situations of terminal illness. Those decisions and other actions that constitute doing harm and doing good would be redefined to allow for the reality of approaching death.

Implications

While care must be taken with generalizations from these data, nevertheless, two points can be made. There is a need to give serious and continuous thought to nondisclosure and self-determination problems with terminally ill patients and their families and the role of patients, families, and health professionals in end-of-life issues. In addition, the development of solutions to nondisclosure problems needs to be placed within a larger framework of bioethics developed to fit the Japan culture as defined and experiences by the present day older generation.

References

1. Ministry of Health and Welfare. Annual report on health and welfare. Tokyo: 1998.
2. Konishi E, Davis A , Duty to Die Study, Funded by the Ministry of Education, Tokyo: 1998.