Physician Non-Disclosure &
Paternalism in Terminal Care: Ethical Issues for Japanese Nurses
- Emiko Konishi RN, PhD
- Anne J. Davis, RN, PhD, DSc
Professor, Nagano College of
Nursing, 1694 Akaho, Komagane City, Nagano Prefecture, Japan
Professor Emeritus, Nagano College
Eubios Journal of Asian and International Bioethics 13 (2003), 213-5.
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.
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
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.
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?
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
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.
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.
Methods, Sample, and Analysis
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'
(5 Categories ) Themes
1. Patient problems: 133 responses
1. No self determination due to
M.D. and family
2. Receive no information from
3. Lack of informed consent by
4. If informed, no social
5. Lack of human dignity
6. Cannot tell patient
7. Prognosis not clear
2.Health Care System Problems: 55 responses
1. Lack of hospice, problems
dying at home
2. Over treatment of elderly
3. Facility rules make hospital
no good place to die
4. When continue/stop treatment
5. Nursing shortage
6. Family cannot stay
3.Social, Ethical, Religious Problems: 55 responses
1. Interpersonal problems:
within family, and between family & health professionals
2. Lack of death education &
ethics knowledge about prolonging/shortening life
3. Patient social status
4. Lack of religion in Japan
5. No public discussion of
6. Religious refusal of blood
4.Physician Problems: 29 responses
2. Lack of knowledge of terminal
illness, lack of treatment standards
3. Care not patient centered
5.Nurse Problems: 29 responses
1.Hospital policy/nurse opinion
conflict and no education about terminal care
2. Cannot help patient with
Findings from Three open-ended Questions
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).
Findings from Fixed Choice Questions
with these reported open-ended questions, four fixed choice questions provided
additional data. The questions were:
1. Does Japan have hospices? 97%
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.
Discussion of Findings
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.
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
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.
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.
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
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?
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.
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.
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.
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.
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.
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.
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terminally ill patients: an end of life dilemma for Japanese nurses and
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Davis AJ. Ethical issues at the patient's end of life: Japanese nurses'
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8. Konishi E.
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9. Ministry of
health, labor and welfare. Kousei-roudou hakusho (white paper on health,
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10. Wulff HR.
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