Physician Non-Disclosure & Paternalism in Terminal Care: Ethical Issues for Japanese Nurses

- Emiko Konishi RN, PhD
Professor, Nagano College of Nursing, 1694 Akaho, Komagane City, Nagano Prefecture, Japan
Email: konishi@nagano-nurs.ac.jp

- Anne J. Davis, RN, PhD, DSc (hon), FAAN
Professor Emeritus, Nagano College of Nursing
Eubios Journal of Asian and International Bioethics 13 (2003), 213-5.
Abstract 124 Japanese hospital nurses responded to a questionnaire on end-of-life ethical issues they encounter in working with dying patients. This paper reports data from three open-ended questions focused on types and frequency of these ethical dilemmas. These data underwent a content analysis. Additionally, we report data from four force-choice questions about where patient die, their knowledge of alternatives to hospital care, and whether they know they are terminally ill.

Five categories emerged as ethical issues from the open-ended question analysis and were arranged by response frequency. Fixed choice question data indicated that patients may not know alternatives to hospitals but they often know they are dying. These nurses viewed the ethical problem of non-disclosure coupled with physician paternalism as the major problem for patients and one that greatly affected the ethics for nurses clinically caring for dying patients.

Key words: Disclosure of terminal illness, physician paternalism, Japan, nursing ethics

1. Introduction

Japanese nurses' clinical ethical problems are reported in the literature that includes our studies focused on end-of-life ethics1-8. This paper extends these studies with data from selected survey questions about Japanese hospital nurses experiences with end-of-life ethical issues and reports the type and frequency of these issues.

The force- choice questions asked these nurses regarded: (1) where patients die, (2) do patients know they are dying, and (3) do they know the hospice alternative to acute care hospital?

End-of-life ethical issues remain important in Japan due to several interacting factors. First, the elderly population continues to increase and by 2020 those over 65 will constitute about 27% of the population9. The birth rate in Japan has dropped to the lowest level since the 1920s. These factors raise questions regarding the future of traditional arrangements including inter generational values of family making decisions for their terminally ill members.

Furthermore, the Japanese national health system may find that terminally ill patients dying in acute care hospitals creates an expense that must be contained by the use of alternative appropriate facilities. The question of what is best for the terminally ill patient should be at the forefront of end of life decisions. Lack of active decision making, financial pressures, and uncertain guidelines for end-of-life care raise questions about "best care" or "right care" for the patient.

A literature survey found that between 1997 and 2002, 3,819 Japanese journal articles focused on end-of-life in Japan and 73 dealt with ethical issues including: information disclosure, decision-making, pain management, and the family role. The nursing literature viewed physician paternalism as a basic ethical issue with terminally ill patients.

2. Methods, Sample, and Analysis

The survey method based on a sample of hospital nurses in Japan provided data on which we conducted a content analysis. This approach is usually used with extensive data to numerically assess frequency of phenomenon. Data were collected from a total of 147 Japanese nurses but of this number, 23 did not answer the open-ended questions resulting in a sample of 124 for this paper. Most of these female nurses had hospital nursing school or junior college education. While they reported Buddhism as their major religion, more than half thought of themselves as not religious.

Table 1: Categories and themes from nurses' open-ended responses

(5 Categories ) Themes

N

1. Patient problems: 133 responses

1. No self determination due to M.D. and family

54

2. Receive no information from M.D.

34

3. Lack of informed consent by M.D.

20

4. If informed, no social support

9

5. Lack of human dignity

8

6. Cannot tell patient intentions

7

7. Prognosis not clear

1

2.Health Care System Problems: 55 responses

1. Lack of hospice, problems dying at home

17

2. Over treatment of elderly

15

3. Facility rules make hospital no good place to die

10

4. When continue/stop treatment

7

5. Nursing shortage

5

6. Family cannot stay

1

3.Social, Ethical, Religious Problems: 55 responses

1. Interpersonal problems: within family, and between family & health professionals

18

2. Lack of death education & ethics knowledge about prolonging/shortening life

14

3. Patient social status influences treatment

2

4. Lack of religion in Japan

1

5. No public discussion of euthanasia

1

6. Religious refusal of blood

1

4.Physician Problems: 29 responses

1. Paternalism

13

2. Lack of knowledge of terminal illness, lack of treatment standards

12

3. Care not patient centered

4

5.Nurse Problems: 29 responses

1.Hospital policy/nurse opinion conflict and no education about terminal care

16

2. Cannot help patient with self-determination

7

3. Findings from Three open-ended Questions

Five categories of problems developed from the groupings of the themes were found in the content analysis: (1) patient problems, (2) health system problems, (3) social, ethical, religious problems, (4) physician problems, and (5) nurse problems. Within these categories, we rank ordered the themes with the most frequent ranked first (Table 1).

4. Findings from Fixed Choice Questions

Along with these reported open-ended questions, four fixed choice questions provided additional data. The questions were:

1. Does Japan have hospices? 97% said yes.

2. Are patients usually told about a hospice as an alternative to dying in the hospital? 59% said no.

3. Do most adults go home to die? 95% said no.

4. Do you think that patients usually know they are dying even when they are not informed? 88% said yes.

5. Discussion of Findings

These five problem categories show that these nurses perceive many more ethical problems regarding the patient (F=133) than for anyone else in the health system. Out of these 133 responses, 108 mentioned physician paternalism. Perhaps these nurses see the patient at the center of their care obligation or it could mean that what they see clinically differs substantially from what they read describing ethical nursing. If this latter is true, what is the source of these nursing ethical ideals? In the second category, problems in the health care system, response frequency decreased to 55 while the last three categories had a frequency count of 37 for social, ethical, religious problems, 29 for physician problems, and 29 for the nurse problems.

The large difference between the patient problem category and all others may be due to a possible bias in the questionnaire, however, these nurses mentioned this category so frequently and in such a manner as to dispel doubts of the importance they placed on these ethical problem of non-disclosure and physician paternalism.

These nurses reported the major end-of-life ethical issue for patients as a lack of self-determination based on lack of information and others making decisions for them.  Nurses viewed physicians as doing harm by their paternalistic actions of not obtaining informed consent and over treating terminally ill patients.

Medical paternalism occurs to some extent in most societies and probably cannot be eliminated. Some argue that it should not be eliminated entirely10. Group obligations and group decisions can outweigh the right of individual choice in Japan. The social goods that postwar democracy brought to Japan have challenged and changed traditions but at times, the ideal embedded in these changes become coopted by the traditional social norms.

Some of these nurses, like others in previous research, believe that physicians misuse their powerful status by making paternalistic decisions that keep information from terminally ill patients and then overtreat them with little, if any, resulting benefit. Their remarks, reflecting a concern with medical paternalism, stem from some nurses' values that define paternalism as unethical. To say that paternalism is unethical depends on the value context, and a cultural definition of the person, in this case, the patient, as a self-regulating, self-directed individual. This concept of the self, from the Western philosophical tradition and influenced by Enlightenment ideals, places great emphasis on individual rights. Individuals have the right to be informed and make their own decisions. This definition of the individual, and the values that emerge from it, conflict with paternalistic medical actions. Did this same definition of the self evolve in Asia? One could argue that traditional social norms and values of group behavior and harmony, mutual dependency, and protecting others from harm create a social environment that does not always accommodate the Western definition of the person as a self-regulating individual with rights.

In situations influenced by Japanese traditional values and social norms, the social context allows, and may even require, physicians to be paternalistic. Is it possible that a terminally ill relative creates this type of social context for the family and physician? The role of family members and their feelings of obligation to protect their relative influences this answer. If dying patients are over 70, they likely have been influenced by traditional Japanese norms and values of mutual dependency. Given the age of some adult children of older patients, they too may adhere to traditions. Inter-generational relationships can vary in urban and rural families and younger generations may define obligations and rights differently from today's older generation. These potential differences found across generations and the role functions of people in the terminal illness context can create interpersonal problems within families or between families and physicians. Physician paternalism can be viewed as a necessary function with traditional families, however, to assume this function with most or all families raises ethical issues for Japanese nurses.

What does physician paternalism do to the nursing role? Nurses caring for uninformed dying patients who cannot give informed consent, sometimes lie to these patients, become vague, or leave the room without responding to the patient. With patients, who lack information but know their terminal status, as many are reported to do, how can nurses be ethical in their caring for these patients?

The middle role between the patient and others is not a new problem in nursing but must nurses in the middle act in bad faith and possibly damage the trust that has developed between nurse and patient? The patient's lack of self-determination can put the nurse in an unethical position. Can a professional nurse be caring and dishonest at the same time? This ethical question, like all others, can only be answered with some basic understanding of what constitutes nursing values and ethics in Japan.

Conflicts between institutional policy and nurses' professional ethical obligations can also compound ethical dimensions of terminal care. Such policies essentially silences nurses who witness interaction and ethical conflict.

Some nurses believe that older patients have difficulty making their intentions known but if they have a socially sanctioned dependant, trusting relationship with family members and health care professionals, this may not be necessary. Furthermore, if they rely on their families to make decisions for them, that can constitute their intentions. Traditional cultural norms of tacit communication and mutual dependency among family members create the socio-cultural context from which to view the ethics of terminal illness. These cultural norms operate to produce interactive socio-cultural behavior supporting lack of patient self-determination, lack of information, and inadequate informed consent. These values embedded in traditional cultural norms and family bonds, set both the role boundaries and functions for each person and the stage on which end-of-life dramas play out.

In the force-choice questions, nurses said that dying patients are admitted to acute care hospitals where they can be over treated because physicians give no alternatives to hospital care. Hospices, according to some of these nurses, need further development because hospitals are not ideal for dying since morally good acute care physicians and nurses may ethically believe they must battle victoriously over the enemy, death. The ethics of do no harm traditionally meant treating patients but this ancient ethics takes on new meaning in modern, scientific medicine where ample technology can keep terminally ill patients dying for a long time.

6. Implications

These nurses see the patient/family not knowing and not being able to decide what is best for the patient coupled with physician paternalism and lack of disclosure as the largest ethical issues in caring for dying patients. 

Since these nurses see the lack of patient information and ability to make decisions due to physician paternalism as the prime ethical problems, does this imply that they support the ethical ideal of an informed terminally ill patients with self determination? If so, certain factors must be considered. First, this ideal may not be possible for today's older patients with traditional cultural values. However, physicians and nurses should not assume that every older patient is passive and wants to rely on others. Second, if this ideal becomes reality, everyone needs education about terminal care as these nurses indicated and finally, palliative care will need more emphasis in nursing and medical education. It is not just whether or not to tell patients of their terminally illness but why tell or not this specific patient and if tell, how and when. If physicians or families give patients this information, then they and the nurses need to create a caring environment where patients can experience dying as a part of life. In the meantime, these nurses find themselves in clinical situations where non-disclosure and physician paternalism, often supported by traditional Japanese values, create ethical dilemmas for them when giving care to terminally ill patients. 

References 

1. Davis AJ, Konishi E, Mitoh T. The telling and knowing of dying: philosophical bases for hospice in Japan. International Nursing Review 2002, 49: 226- 233.

2. Davis AJ, Konishi E. End of life ethical issues in Japan. Geriatric Nursing 2000; 21: 89-91.

3. Davis AJ, Konishi E, Mitoh T. Rights and duties: ethics at the end of life in Japan. EJAIB 2000; 10: 11-13.

4. Konishi E, Davis AJ, Abia T. The ethics of withdrawing artificial food and fluid from terminally ill patients: an end of life dilemma for Japanese nurses and families. Nursing Ethics 2002; 9: 7-19.

5. Konishi E, Davis AJ. The right to die and the duty to die: perceptions of nurses in the west and Japan. International Nursing Review 2001; 48:17-28.

6. Konishi E, Davis AJ. Japanese nurses perceptions about disclosure of information at the patients' end of life. Nursing and Health Sciences 1999; 1: 179 - 187.

7. Konishi E, Davis AJ. Ethical issues at the patient's end of life: Japanese nurses' perceptions. In: Proceedings of 12th World Congress on Medical Law Vol. 1. Siofok, Hungary, 1998.

8. Konishi E. Nurses' attitudes toward developing a Do Not Resuscitate Policy in Japan. Nursing Ethics 1998; 5: 218-227.

9. Ministry of health, labor and welfare. Kousei-roudou hakusho (white paper on health, labor, and welfare). Tokyo: Gyousei, 2001 (in Japanese).

10. Wulff HR. The inherent paternalism in clinical practice. Journal of Medicine and Philosophy 1995; 20: 299-311.


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