"My daughter has lupus and we are searching
for the BEST treatment we can for her. She has not
been in remission in the three years since her diagnosis."
"My question is: How does one go about finding
the premier hospital for looking at best practices
known for a particular disease and applying them to
an individual patient?"
-T. J.
This is quite a loaded question and it is with a
moderate amount of fear that I undertake to try to
answer it. What one person might consider "quality
care" might be interpreted by another "expert"
as an unproven treatment, an unnecessarily expensive
treatment, or even just plain unindicated. Many people
are under the mistaken assumption that most of the
time there is a "best treatment" that is
known with certainty. This is infrequently the case
and it is almost always the case when one or several
standard treatments have already failed.
You mention looking for a premier hospital to go
to. I think you mean physician or group of physicians
to go to rather than a hospital. The only time a hospital
becomes important in finding premier treatment is
when specialized equipment, for example the latest
devices to give radiation therapy with the least side
effects, is involved in the treatment. Another time
to focus on the hospital is when a treatment needs
to involve several different support disciplines such
as physical therapy, social services, occupational
therapy or specialized nursing services for example.
Then the facility and its collection of resources
becomes important.
If the bulk of the treatment is trying different
medical therapies such as it might be with lupus (systemic
lupus erythematosis- SLE), then the physician is the
key component, not the facility. A medical specialist
in a medium-sized town may be as good or better than
the medical specialist at a nationally known medical
center in a major metropolitan area. This is especially
true in a case where diagnosis is the difficult problem
since most doctors have access to the same quality
of diagnostic equipment across the country. It is
also true for treatment of difficult cases except
where the treatment involves specialized equipment
or team support services for surgical procedures or
cancer for example.
What constitutes quality medical care?
Let me give you my definition for quality medical
care.
The highest quality of medical care is that which
is administered while being aware of the latest scientific
medical knowledge, tempered by extensive clinical
experience with the specific category of illness,
and supported by the necessary resources to address
the multiple quality of life effects of that illness
and its treatments.
This definition implies the first step is a knowledgeable
health care provider who keeps up with current medical
literature. Many physicians do this but not all. Specialization
in this case helps because it is difficult to know
and keep up with all of medicine. If there is a medical
specialty society organized around the specific illness
or condition you have, then the members of that association
or society will have a higher percentage of the membership
who keep up with the latest knowledge than non members.
Physicians who conduct research into that illness
will have studied it even more and know all of the
latest research findings although the researchers
may not have the same volume of clinical experience
in taking care of the illness.
How can I practically go about finding the best resource
for treating my condition?
I would suggest one or both of the following approaches:
1. Ask your present physician to help you find out
the best resource for you. Your physician knows what
treatments you already have received and what unique
aspects of the condition you might have. If your doctor
is unaware who to refer you to, ask him or her if
there is a specialist in your local area who would
be aware of nationally known experts and then make
it a point to see that physician and discuss referral.
Sometimes physicians seem to take offense when you
ask about referral. If they do, just continue politely
and tenaciously to request who they would seek for
a second opinion if they or their family had the condition
you have. While a physician may be offended that you
no longer trust their judgement, I have never met
one who would refer you to an inferior quality of
care situation. If the physician seems very knowledgeable
and suggests that another expert is unlikely to be
able to help you, listen carefully to that advice.
You may just be denying that the illness is severe
or un curable and prolonging the time to accommodate
a chronic medical condition or even an impending death.
2. Finding a quality medical resource on your own
is a difficult task but let me relate how a doctor
might do it. Keep in mind that many doctors seek local
care and treatment for medical conditions they develop.
If they seek out nationally known experts but do not
know those experts personally, they usually seek the
opinions of medical specialists in the specific field
and supplement that advice with their own cross references
that they detect from the medical scientific literature
and membership lists of medical speciality organizations.
Steps might include:
Literature searches (recent 10 years) on PubMed to
see who the authors are who are performing the latest
research in the area and what institutions they are
at.
Look up recent books for both professionals and consumers
and determine where their authors are from.
Find out if there are any medical speciality societies,
associations or organizations that focus around the
disease you are concerned with. The internet makes
this much easier than it used to be. Identify physician
members of these organizations and see if there is
a way to contact some of them or have your doctor
contact them to ask about treatment resources. You
might even contact a member on the opposite coast
to see if they would recommend someone near to you
geographically to treat your condition.
Search the internet to see if there are any medical
centers of excellence that self-propose to offer the
latest medical care for your condition.
Synthesize and correlate all of this information to
select 2 or 3 physicians, institutions or medical
centers to possibly approach for second opinions.
Currently you can also seek out support groups on
the internet of people who may also suffer from your
condition. While I would not take the isolated advice
of any one person who might have had an atypically
outstanding or horrible experience, when multiple
patients tend to say similarly good things about their
experience, you should listen to them.
I do not want to imply that this whole process is
easy. It is not. Even physicians who are specialists
in a medical area rarely agree where or who provides
the best premier health care. I would take this as
a sign that many times the differences in health care
are very small and the range of quality is not from
poor to best but rather from very good to excellent.
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