Case1) HCM case (Unwise Treatment Refusal by Competent Patient)
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iCASE)
(The case is changed not to disturb the paient's privacy)
A 50 year old man was diagnosed with hypertrophic cardiomyopathy
after he came to the hospital for angina and fainting. Cardiac angiography
showed 3 vessel narrowing and a stent operation was done.
He took a beta-blocker and he has not experienced another attack
for more than one year. He was admitted to the hospital for follow up
angiography, which showed advanced narrowing and he needs
further treatment to avoid sudden death. The sudden death rate of these
stage of HCM is 4% per year.
But this patient recently passed the exam to go to Tokyo alone for one year
to study the special course to be a leader of the company.
He now wants to be discharged from the hospital and go to Tokyo as
soon as possible.
He said, "I understand my health condition more than the doctors.
This is my last chance to realize my dream be a leader in my company."
His family, his wife and his 18-year old son who will take entrance
examination to the university next year do not want him to go to Tokyo
alone. They think he will work hard in Tokyo. They are afraid that he
will experience the next attack when he will be alone.

(Question)
We understand we doctors need to evaluate patient autonomy.
But in the case when the wrong behavior of the patient will make
the patient's situation worse, what should the doctor do?
The exception of patient autonomy is only when the patient
is incompetent?
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Howard Brody
Center for ethics & Humanities, Michigan State U., USA

'Unwise' Treatment Refusal by Competent Patient

This case can be discussed using the "standard" approach to medical ethics
which is the dominant way ethicists and physicians in the U.S. think about
these issues.

This approach emphasizes patient autonomy, as the student who wrote up
the case understood very well. The basic idea of patient autonomy is that
if a competent patient makes an unwise choice, then the patient retains
the fundamental right to make that choice, even if the result is ill health
or death.
This is very hard for most physicians to accept if they were trained in a
system which has prized physician judgment and physician discretion over
patient autonomy in the past; but it is the ultimate test of whether we
believe in autonomy and self-determination as ethical values. If I am
willing to respect your autonomy only so long as I agree with your
choices, but am prepared to override your a utonomous choice as soon
as I disagree with you, then in an important sense I really do not respect
your autonomy at all.

The most important thing to remember in this context is that autonomy
is not the ONLY ethical value. Physicians still have an obligation to try
to provide benefit for the patient, which in this case is to talk him into
having the additional procedure (assuming that the evidence supports
the wisdom of the procedure,which I as a non-cardiologist feel
inadequate to discuss). The question is, then, how to combine respect
for Autonomy with an effort to secure benefit and avoid harm for the
patient.

As a family physician, I would try to do this by having a conversation
with the patient roughly as follows:

"On the one hand I want to respect your right , as a competent patient,
to make a decision which I might disagree with. And I agree with you
that I am thinking much more about your health; while you have to think
about your work and career and many other matters besides just your
health; so in that sense you know your own life much better than I do.

"But on the other hand I think you are making a very serious mistake, which
in this case could be a fatal mistake. I don't think I'd be doing MY job properly
if I did not spend a lot of time with you to find out why you are making this
decision, and to make sure that you understand all the facts about your heart
condition. So I want to appeal to you to go home from the hospital for now,
but not to leave for Tokyo until we have had more chance to discuss this
fully. I cannot make you do this, but I ask you to do this both for myself and
also for your family who is very concerned about you."

One hopes that my emphasizing to the patient 1) that you respect his ultimate
right to make his own decision; and 2) that he can go home from the hospital
at least temporarily, he will relax enough to think more carefully about his
future options. Whereas, if he feels that you are pressuring him to make a
decision right now and to do what you want him to, he will assume a more
adversarial posture, which will prevent him listening to what you say and
just make him more obstinate.

One hopes that the result would be that he will change his mind of his own
volition, so that the physician respects both principles of autonomy and
benefit.
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Mike Fetters
University of Michigan, USA

'Unwise' Treatment Refusal by Competent Patient

As I read this case, it seems the options have been too narrowly defined.
Currently there are two options, one, refuse treatment and go to Tokyo,
or two, accept treatment and stay at the local hospital. Is it possible to
align the patient goals of going to Tokyo, and the physicians' goals of
the patient getting treatment?

For example, is it possible to make arrangements for the patient to get
treatment in Tokyo? This would serve the goals of both parties.

What are the barriers to the patient being treated in Tokyo? What are the
implications for physician-physician communication?
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Ole Doering
Research Fellow, Institute of Asian Affairs, Hamburg
Cross-cultural Philosophical Hermeneutics
Practical Theory of Science
Medical Ethics

As to the main question of your case, the patient's incompetence as only
exception from the patient's autonomy?

Firstly, I am inclined to make the philosophical statement that autonomy is an
inalienable quality of the human being, and this means that no one, neither
physicians nor family members, nor - which is of noteable interest here - the
patient himself can 'loose' this quality, and that someone else, namely the
doctor, can be a curator of his autonomy. This does not imply that every
decision of the person is automatically an autonomous decision. In fact, most
of our decisions are definitely not, because we simply do not know
comprehensively about the reasons (rationals), emotions and psychological
voices melting together into what we should better call a heteronomous
decision.

We can only state this as a fact, and abstain from lamenting the petty human
condition. What we need are criteria for what an autonomous decisions is,
revisited in every given situation, and how to help the respective person come
to terms with his or her general attitude towards herself or himself. (For a
more detailed sketch of the related philosophical framework, see Kant,
Groundwork of the Metaphysics of Morals, and the related works).

The given case makes it clear that the patient does indeed not follow any
autonomous decision in this fundamental sense, but a heterogenous motivational
cluster. However, what most people refer to as 'autonomy', namely a not
enforced or coerced self-determination, is different from autonomy in that it
can and does regularly conflict with the self determination and free action of
other people, and also often with other claims and interests within the same
person. To handle this set of problems we have established the concept of a
liberal civil society of mankind, which ideally allows everyone to enjoy an
utmost share of self-realization, without necessarily meeting the standards of
autonomy. On this level, which actually is the level of most of these case
discussions, we have to consider not only the claims and interests of a
certain individual, but also the claims and interests of all people directtly
or indirectly effected by them. We have to find a reasonable balance of
legitimate interests

My personal suggestion of how to proceed in order to achieve a balanced view
towards this case, which I can not further develope as an ethical statement
here, for lack of time, is that we should scrutinize the patient's will first,
secondly the effected people in the family, and that we should thirdly leave
away the personal moral and emotional judgement of the doctor, as plausible as
it might be, because this would involve the doctor and make him or her an
interest party, while all he or she can and may legitimately do, is to explain
the situation properly to everyone's concern, including the risks and required
counter-measures in case of emergency.

As to the first step, it is ethically demanded from every person, including
the patient, to try to act according to his best personal and unharmful
interest. This follows directly from our human capacity to understand
ourselves as autonomous beings. The given patient has an additional moral duty
because of his responsibility towards his family. It would be immoral, and
unethical of him to follow his 'carreer-dream', if there is a very high risk
of damaging himself and harming the persons of his care. The patient should be
morally, and maybe even legally advised to seek other, less harmful options.
Mainly he ought to avoid the hubris of pretending to know more about his
medical condition than the doctors. This is mere doltishness. There is nothing
a physician can do.

It is very important that the patient shall seek for emotional, psychological
and professional encouragement and understanding among his colleagues and
superiours, because they also have their responsibility towards his person.
They may not put any social pressure on him to value the carreer higher than
his basic family group.

As to the family members, they have both, a right to demand unselfishness and
loving care for themselves, and a duty to care for the health of the husband.
In the worst case, however, i.e. if he remains stubborn, they still might be
morally obliged to care for him, e.g. by accompaning him, if this can be
reasonably expected from them. Immoral or stupid acts of one person do not
automatically free others from their obligation towards him or her.

Finally, as to the doctor, he or she has no mandate to enforce a 'right'
decision. All he or she can offer professionaly is information, explanation
and medical help, disregarding the degree of irrationality in the patient's
foregoing behaviour. The doctor should do all he or she can to act according
to the medical requirements. After all, he or she has no means and no
legitimation to paternalize if this means to enforce the right. The doctor may
only provide check-up or treatement if the patient agrees.

All of this has nothing to do with autonomy, but with the struggle to achieve
a reason-guided self-determination in life.
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Stuart Sprague, PhD
Associate Professor of Family Medicine
Medical University of South Carolina
Anderson Family Practice Center
Anderson, SC   USA
ssprague@anmed.com

Sorry to be late in responding.  The case is a classic demonstration of the
issue of patient autonomy.  I will tell you about a similar case we had in
our hospital which was discussed yesterday.

   A 72 year old woman who had multiple medical problems and was obese
came in because of chest pain.  She had had the chest pain for some time
and it was regularly relieved with up to 3 nitroglycerine tablets.  On this
occasion it was not relieved after taking 6 tablets, so she came to
the emergency room.  She was admitted to the hospital.  Her EKG was
abnormal but was unchanged from a previous one 6 weeks ago.  A stress
test at that time had shown minor heart abnormalities, but it was felt she
could continue on medical management only.  The physician
thought that this time she should have a catheterization with possible
angioplasty or bypass surgery if needed.
   Several people in her family had had heart disease, but they had also had
bypass surgery with good results and a better quality of life afterward.
This patient refused to have the catheterization, stating that she did not
believe she could survive the surgery.
  She also stated repeatedly that she was 72 years old and she had led a
full life.  The physician felt very strongly that the benefits of the test and
surgery or angioplasty far outweighed the risks.  Her quality of life
could be dramatically improved if she would consent.  She did not.
   Finally, after several attempts at persusion, she agreed to the
catheterization.  It showed coronary artery blockage which could
be corrected by bypass surgery but not with angioplasty.  When asked
again, she said she did not want to have surgery.  The physician felt that
she was choosing a course which would lead to decreased function and
earlier death by not having surgery.  Furthermore, several members of
her own family had had good results with the same surgery. He thought
of getting them to help persuade her to go ahead.  Should the physician
take further initiative to try to persuade the patient, or should he accept
her decision and prescribe medication to relieve her chest pain?

   In both of these cases, the physician has superior knowledge of the
medical risks and benefits of the choices faced by the patient.
The patient, however, has a unique perspective on his or her own value
system.  Unless the patient meets the criteria for legal restraint as posing
a threat of harm to self or others, there are not means to require treatment.
When persuasion is the only tool to use, the physician must consider
carefully how to do that.  How you speak, your tone of voice, and your
body language all play a role.  Some forms of persuasion become coercive
particularly if language or gestures of threats are used.  Some persons,
especially family members, may be able to play on the emotions of the
patient.  What strategies to use and how far to go in trying to persuade
can be a difficult decision.
 
  Ultimately, though, the decision belongs to the patient.  After carefully
recording the options presented, the doctor should do what the patient
wishes.  One would hope, as a family physician, that the patient takes
into account the impact of his or her decision on others,especially family
members.  How much the influence of family and the desire to cooperate
with others plays (or should play) a role in decisions has been one issue
which seems to vary from culture to culture.  I have seen articles which
suggest that in Japan, the desire to cooperate and the considerations
of family concerns is of greater importance than in the United States.
Whether this is true probably varies, even within each country.  A recent
article in the New York Times Magazine suggested that attitudes are
changing in Japan.  It also suggested that economic forces are creating
this change.  It is interesting to note that it is economic motives that seem
to be motivating the patient to go to Tokyo rather than stay at home for
further treatment and a less stressful lifestyle.  I would be interested in
your observations as to whether this is true in your practice in Japan.
I can supply references and a copy of the article if needed.
   I look forward to hearing how the case is resolved.
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Yooseock Cheong M.D.
Department of Family Medicine
Dankook University, Colledge of Medicine, Korea

About your case, Doctor in charge have to give all medical possibility
(information) to his patient. And then, if that patient decided no further
treatment, physician have to give another detail informations reduce his
cardiac risk. For example, usuful relaxation skill, enough rest, and no
anger...
That's all thing to do by physician. Patient's life is the most important
value to Doctor in charge. but, someone (each patient) may think the
other things are more important to his life. It depends on a personal
decision (patient's autonomy). In addition, his risk is a just statistical.
So, if he managed his health very well in doctor's advice, he will
caught two rabbits in a hand after one year.
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Masashi Shirahama
Director of Mituse National Health Insurance Clinic
Lecturer of Department of General Medicine,Saga Medical School,Japan

I got some comments on this case from abroad and also from Japanese
friends on Bioethics.
Most of the comments say the patient autonomy should be respected.
But as the student who took this case to the clinical ethics conference
thought, in the case when the wrong behavior of the patient will make
the patient's situation worse, I think the doctors should do something.
 
One commentator Dr.Fujibayashi,he is a psychiatrist in Community Mental
Health Center thinks about the patient's mental state. Is there patient's
fear or depressive feeling which makes him not to face the hard fact that the
high possibility of death? In order to rule out those possibility, the doctor
needs to talk about the patient's feeling.

Other commentators,Prof.Saiba who was a social worker,and Rev.Hagiwara
told about the necessity of social work or pastoral counseling.
Nurse can also help to understand the background or emotional problem
of this patient. If the patient has a family physician who knows him
well, the physician will help him, not only from the medical
background but also from the social and emotional background.

It needs time and good explanation for the patient to understand
the disease and the risk of the disease and how to prevent the
untimely death.
The risk of the untimely death of HCM is not predicted so easily
we don't know exactly how many % the stress or hard work will
raise the sudden death. But the work and live alone in Tokyo will
be stressful and may worse the disease.

Owing to the eager persuasion of the medical staff and his family
members, this patient decided to stay in hospital for further examination.
When he was in hospital, he felt heart attack again and The A-C bypass
surgery was done.
He lost the chance to go to Tokyo. But his life was saved.
He needed to change his goal of life. But finally he decided his way of life
with the help of the medical staff and the family.
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Tomoko Matsuo
iStuding in Doctor Course in Kyushu University, department of Law,
Now studying Bioethics in Heidelberg University, Germany)

Patient's autonomy (the other case)

In this case, the patient's competence is sure, but he doesn't want
to obey doctor's instructions. He rejects the treatment in a sense.
I think the doctor in charge can not force his attitude against the
patient's will. But we must take his familiy's will into
consideration. They can say something against his will, because he is
responsible for his family's life not only  financially but also in
a sense of the deep feeling. The doctor can stand by the family.

The patient will make progress in his job, but for what does he work?
Just for his own honor or selfsatisfaction? He has lived and worked
with the support of his family so far, hasn't he?  What meaning has
his family to him in the world? Or is the family relation
already broken? I would like to ask the patient these questions ?

That is my short comment. I would be very happy, if this helps your
discussion.
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Atsushi Asai, M. D.
Department of General Medicine and Clinical Epidemiology
Kyoto University School of Medicine, Kyoto, Japan
Centre for Human Bioethics, Monash University, Melbourne, Australia

What should the physician in charge do?
The physician should strongly dissuade the patient from discontinuing
his treatment in a local hospital unless similar cardiac interventions
are immediately available in a new hospital in Tokyo.
It may not be an unjustifiable intrusion into the family privacy for
the physician to claim that the patient's refusing life saving
interventions could be equal to capricious abandonment of his
responsibility to his family.  It is also possible to claim that the
patient's decision is not justifiable in terms of just resource
allocation.
 
What ethical principles are in conflict?
In the framework of usual bioethical consideration, it is truism
that a principle of respect for patient autonomy and a physician's
duty of beneficence are in conflict.  However, close observation
reveals that a duty of no harm that the patient has, a patient's
right to family privacy, a family member's right not to be harmed
by the patient, a principle of justice are also contradicting one
another.

Arguments that support the decision recommended above.
In the beginning, it should be confirmed that patient's autonomous
decisions should not be regarded as overriding or absolute when
the decisions evidently cause harm to others.  It can be argued that
the patient has a right to decide about what is done to his own body.
An appropriate physician-patient relationship does require medical
professionals to respect competent patient self-determination.
But it is not the case when a principle of autonomy brings about
other's suffering or unhappiness.  In addition, it would be no problem
if he could continue to have necessary treatments and follow-up
in Tokyo.

In the following, I will argue about why the decision the patient
made is not acceptable and why the physician should aggressively
discourage the patient from leaving the hospital.
If the patient has no family who are dependent on him, my analysis
would be simpler and could resolve a problem involved in the case
according to a principle of respect for patient autonomy.  If he had no
family, no one but himself would be harmed by his sudden death.  In a
liberal and pluralistic society, it should be presumed that an individual
has a right to control his or her own life and decide what is valuable
based on his value and personal goals.  It seems to me that the patient
have firmly decided to put his plan forward no matter how risky it
will be and find his new life worthwhile.  On the other hand, it is quite
an unwise choice from the medical point of view.  4% chance of death
is, medically speaking, significant and it would constitute a failure of
a duty of beneficence if the physician let the patient go.  It can be
claimed, however, that one's having a right to be left alone requires
other to accept a duty not to intervene in the former's private life.
Patient's preferences to making autonomous decisions should be
overriding when the patient consistently and rationally desires self-
determination and it causes no harm to others.  Medical professionals
have to take patient's preferences toward autonomy seriously.  This is
because once physicians are permitted to force patients to undergo
whatever medically beneficial is in the name of beneficence,
the consequence is to be clearly unacceptable.  For instance, physicians
will be allowed to coerce their patients to do exercise everyday, have
an only healthy meal, and ban alcohol, cigarette, and even chocolate.
These kinds of actions are infringement of personal liberty and must
not be accepted.  Most people prefer to be healthy in order to achieve
their plans, but they do not live solely keep themselves healthy.
Hence, if we can presume across the broad that an individuals has
a right not to be intervene in his or her life, we should respect
the patient's decision no matter how inappropriate it is from
the medical point of view.

So far I have argued that a principle of respect for patient autonomy
should be respected as long as no harms are caused by it.  However, it is
not the case at all in this scenario in question.  This is because the patient
has a family.  The most likely consequence that the patient brings about is
his premature death.  What is crucial is that his death will unavoidably
cause a gear deal of emotional and financial predicaments to his wife and
son.  I would argue that the patient has a responsibility to earn his family
and his going to Tokyo against sincere wishes of his family not to go is,
in a sense, abandonment of his basic duty to the most intimate others.
His decisions would harm his family and it is, therefore, not ethically
justifiable.  Of course, he has a right to self-determination and should be
allowed to live as he wants.  But let me remind you that he spontaneously
married with his wife and had a son and the voluntary choice has created
a duty not to ruin preferences of his family.  Therefore, the physician
should discourage the patient from leaving the hospital in order to protect
the best interests of the patient's family as well as the patient himself.
Even in a liberal and autonomy-oriented society, our responsibilities to
others and caring for intimate relationships should be addressed.
Furthermore, from the standpoint of just resource allocation, the
decision to discontinue medical interventions is also not acceptable.
This is because the more serious his medical condition becomes by refusing
timely treatment, the more expense interventions are required.  For example,
if he had a heart attack in Tokyo, it would demand lengthy intensive care and
use others' money that is otherwise saved.  It can be claimed that it is
harm to others.
 
Unresolved questions

Although I have argued that physicians have to take the interests and
preferences of the patient's family into consideration, how much
a physician should interfere with family matters is not certain.
Can the principle of beneficence be extended to the interests of families?
It is also unclear whether or not national health care should be unconditionally
used to treat patients who become ill due to unwise refusal of medical care.



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