1999. Clinical Ethics Case 6)

 3 years old boy.

The Patient was suffering from Down Syndrome and VSD (Ventricular Septal Defect).

The patient has been  checked regularly by Pediatrician in B hospital. But his body weight
and height growth is bad and the doctor examined the cause. The patient's VSD was not
so bad which will make bad growth of the patient. Perhaps his VSD will be cured naturally.
It is suggested the patient's parents holding a large amount of debt so working together
from early in the morning to the late at night and perhaps they don't have enough time to
care this patient.

In such a case, to which extent does the doctor can pry into these kind of family problem?



Comments on this Case



Philip Hebert MD PhD CCFP
Assistant Professor, Family Medicine
Sunnybrook Health Science Centre
Clinic Office: A102, SHSC, 2075 Bayview Avenue
Clinical Ethics Centre: Room 228b, SHSC
Toronto

As you note, the child is the patient & his interests must be defended
by the pediatrician. The doctor must "pry" into this family problem as
depely as necessary to find out why the child isn't thriving. Doctors
themselves need not do the actual "prying" themselves, that is the
mandate of child welfare authorities. If the child has been examined &
worked up & no organic cause found for his failure to thrive, the
assumption will be that the cause lies with neglect by the parents
("psycho-social deprivation"). In Toronto, the child would be admitted
to hospital if his condition was serious enough. As well, the Child
Welfare Agency would be involved to see what supports / helps the family
needs to properly care for the child. If the family was unwilling /
unable to change, the courts would be involved to seek temporary or
permanent removal of the child from the home. Parents are obliged by law
to provide the "necessities of life" for their children & may face
criminal sanctions if they do not do so. Likewise, health professionals
face legal sanctions if they do not bring to the notice of the child
welfare authorities children, such as this one, who may need protection.
Is this case problematic in Japan? It should't be here as there are
clear guidelines for professionals, alhough I'm sure such cases are
underreported.



Stuart Sprague, PhD
Associate Professor of Family Medicine
Medical University of South Carolina
AnMed Family Practice Center
Anderson, SC  USA

In the case of the young boy with Down's Syndrome

As a teacher of Family Medicine, I would recommend that the physician
inquire of the parents as to the arrangements for their son's care.  It is
not a matter of prying inappropriately but a matter of the physician attending
to the needs of the patient.  Why the parents need to work such long hours
and how much debt they have are matters which they may choose to keep to
themselves.  How the needs of the patient are addressed (or neglected) is
something the physician should be concerned about.

Treating the family system of the patient as a whole is a standard part of
family medicine.  While the physician may not be able to solve all the
problems uncovered in his thorough social history, the parents can be
supported in their difficulties and referred to appropriate social service
agencies, counselors, and others who can assist in their struggle to meet
all the demands placed on them.  Showing concern and making referrals
can have a positive impact on the health of the patient.

Thanks for sharing the case.



Howard Brody
Department of Family Practice and Center for Ethics and Humanities in the Life Sciences,
Michigan State University, East Lansing, MI USA.

Dr. Shirahama's case suggests some important cultural differences between the US and
Japan. American pediatricians feel compelled to inquire carefully into these sorts of family
issues because of their legal (as well as their ethical) duty to report cases of child abuse and
child neglect. If it should turn out that this child is not receiving the needed care in this
household, it may be possible to provide additional services which could help the parents. Or
a court could order the child to be removed from the home and placed in foster care.

The American culture has a great deal of respect for family privacy but tends to draw a sharp
line when it comes to the potential for harm to the child because of parental "neglect."
These parents may admittedly not feel neglectful at all, arguing that it is precisely because
the child needs a good home that they are working so hard for financial stability. But the
larger culture is willing to step in to overrule the parents in order to prevent harm to the child
in such cases.

The way Dr. Shirahama raises the question suggests to me that the Japanese culture may
view family privacy as a much more important boundary that the outside world should not
cross, even with good intentions such as better child health.

Incidentally, the case says, "it is suggested" that the child may be getting poor care because
of the parents' debt and work schedule. How was it suggested? Did the pediatrician get this
information from talking with the parents? Or was this information provided by a different
source? The way the information came to attention may play a role in deciding what to say
to the parents.



Masashi Shirahama's resposnse and the Brody's coment to the response 

Dr. Shirahama offered a reply to my response above by e-mail which I am quoting from
below. I am glad he responded as his observations on family and culture in Japan take my
vague speculations to the level of informed observations:

********************************************************************
I think Dr Brody's comment on cultural perspective is very important.
Perhaps in Japanese family power is still much more power than that of individual.
But too much power of the family make some problems.
In Japan we don't want to talk about the family's problems to others. In rural area such as
Mituse Village where I live, the community still has the power and the neighbors can know
each other so the family's problem would be known by the neighbors and some respectful
older person pry into the family and help them.
But especially in city area, the relationship between the family and the community is very
weak, so if the family has the problem they cannot find any help and confined.

I think Brody's comment on the information resource is also important. It is a key
to how to make realtions with the parents.

Dr Fujibayasi who is a psychiatrist in community health center send me the comment.
(I would like to translate the summary into English.) This kind of approach is one of the
possible and accepted approach in Japan.

"It is difficult to judge this case neglect case or nurture difficulty case.
But, it is necessary to continue mutual trust without blaming the parent as a case for which
help is necessary even if it is either.
Only one doctor cannot take care of this case. Team approach such as with nurse, MSW,
counselor, community health nurse, dietitian, patient's parents group can help the family.
It seems that the time will come when the surrounding person is told family's problem
comes from the family if the surrounding support team can make a good relation to the
family member."
*********************************************************************

I would simply add that I think Dr. Shirahama's observations about 1) rural vs. urban
differences; 2) need for a team approach; and 3) need to retain trust and alliance with
family instead of an accusatory posture, applies equally well to U.S. practice as to Japan.



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Masashi Shirahama M.D.
Director, MItsuse National health Insurance Clinic
Lecturer, Department of General Medicine, Saga Medical School
2615 Mitsuse, Kanzaki Gun, Saga Ken
842-0301 Japan

TEL0952-56-2001, FAX0952-56-2912
E-mail:HQC00330@nifty.ne.jp
Home Page:http://square.umin.ac.jp/masashi