I have been a member of this group for 6 -8 weeks now. I have read all the
messages that have appeared on my screen, learned much from many of them. I have
responded to a few, but I had a period of inactivity in late Feb. and early
March occasioned, first by some e-mail problems, and later by an out-of-town
trip. I shall be staying in closer touch in the forseeable future.
 
In any event, I have noted that meny of you write about your experiences with
your respective doctors and these experiences range from D- to A+. A fairly
frequent complaint is that the doctor is (or was) "not caring." As a physician -
not a neurologist, but an internist who has had to learn more about PD than I
ever thought I wanted to know - I feel an urge to respond and perhaps explain a
little about doctoring that not all of you may be aware of.
 
Let me make it clear, though, that I am not offering these remarks as an excuse.
They are what I have described - explanatory. I am the first to say mea culpa. I
can think of many times when I was "not caring" (hastening to add that there
were times, too, when I was.) I suspect that every doctor has been been
insensitive on occasion, and that a few are regularly lacking in appropriate
sensitivity.
 
One thing has become clear to me in the past decade as a CG, however, is that
doctors see chronic disease patients as a series of snapshots: "This is the way
a PD patient looks (today)" - "This is what diabetes is like (today)'.Some
patients exaggerate their symptoms., others minimize them. Some do both at
different times. Earlier in the course of my wife's PD, she put on a "really
good show" every time we would go to her neurologist. She would seem just great,
tell about cross-country skiing, etc. to show that she really didn't have bad
old PD. An hour or two later, she would crash and guess who would have to deal
with the reality - naturally the CG.
 
I have concluded that the chronic disease is not really a series of snapshots;
rather it is a movie, moving sometimes slowly, sometimes rapidly, but always
inexorably to its denouement. There is no way for the doctor to see this movie
-really see it- unless he/she is the victim or CG.
 
Another factor in "caring" vs. "non-caring" is time.I fully realize that
"caring' = time spent is not a perfect equation, but the two are by no means
unrelated, either. The doctor who is perceived as caring is one who spends TIME
with his/her patients. Unfortunately, governments and insurance companies are
unwilling to pay for time; they pay for procedures. The doctor who spends too
much time with the patient is an inefficient doctor in current concept. As
"managed care" takes over the healthcare field (as a supposedly cost-cutting
measure) the doctor who can't meet the 16 minutes per patient average will find
her/his wages cut or perhaps will be invited to find work elsewhere.
 
In our nation, we have always rewarded the spectacular performer far more
generously than the simply consistent performer. The home run hitter gets a
larger contract than the singles hitter, even if the latter may hit for a higher
average. Doctors are not immune to this fiscal reality.
 
Finally, doctors are confronted almost daily with the fact that patients may
well know more about their diseases than they, the doctors, know. This is not
truly a new concept. Doctors have regularly encouraged their patients with
diabetes to become knowledeable students of the disease in order that they might
deal effectively with hour-to-hour changes characteristic of the disease. Today,
though, through the miracles of modern communication - TV, computers, the
Internet - voluminous information is available about almost any imaginable
subject at the flip of a switch.
 
The patient may appear in my office with a faxed copy of an article in
yesterday's "Zimbabwe Journal of Medicine" extolling the virtues of stuffed
black olives for the treatment of arthritis, wanting to know what I know about
this. I'm lucky if I know what was in the "New England Journal of Medicine" of
two weeks ago. I certainly can't tell him much about the black olives. If the
proposed new "breakthrough" treatment appears harmless, i.e. black olives, and
will not interfere with what I consider the most effective treatment for him, I
can gracefully acquiesce in a trial. On the other hand, if the proposed new
therapy appears to be dangerous, i.e., a tablespoon of gasoline four times a
day,  or if it requires a move to Mexico, which in turn requires mortgaging the
old homestead, I believe it is my duty to do my best to dissuade him from such a
course. I am unlikely to emerge from such an encounter with my image as a
"caring" physician intact. I am much more likely to be thought of as
insensitive, unwilling to entertain new ideas, and protective of my turf.
 
Such experiences do occur, and they are humbling for us docs. "A good thing,"
some of you will say, - and rightly so. A little humility is good for all of us,
perhaps especially for doctors. *BUT* don't be surprised when you seem to know
more about PD than he/she does. That's your job! The doctor may still be able to
help you steer a proper course.
 
I am sorry to have been so long-winded about all this. These thoughts have been
percolating for some time. To those of you who have stayed the course this far,
my thanks. If you are lucky enough to have a "caring" doctor who also is a true
PD expert, you are a lucky person, indeed.
 
Keep well.
 
                              Bob Howard
 
 
Bob Howard, occasionally known formally as:
Robert B. Howard <[log in to unmask]>
1320 Wisconsin St.
Hudson, WI 54016
Voice phone (714) 386 3596