DRAFT of 10/08/07
My Medical Adventures
or
How I am Alive Thanks to Some Doctors and in Spite of Others
by
Theo Pavlidis
Copyright ©2007
A. My Recent Medical History
This is detailed account of my encounters with medical misdiagnosis,
mainly, during the winter of 2006-7. There is a shorter
account that focuses on issues of general interest. Because there
is little overlap between the two documents you should read the shorter
account before reading this document.
In order to protect the privacy of everyone involved I have change descriptions
slightly and I am also vague in some points. When I write "my doctor"
this refers to different individuals in different parts of the document.
In January of 2006 I had radioactive seed implants to treat prostate
cancer. After I recovered I started feeling tired during the day and I
tried to deal with it by taking midday naps. However the situation became
far worse in late November 2006 following a severe respiratory infection
that. One of the problems I had was that my sleep was interrupted 7 to
8 times (if not more) each night and, not surprisingly, I was feeling
lousy during the day. Then a series of misdiagnoses started and I did
not found the correct diagnosis until after four months. First I made
a tentative diagnosis myself (based on Internet searches and reading medical
articles in the Health Sciences Library of the University) and then I
found a doctor willing to order the tests to confirm what I knew was the
cause of my problems.
I have moderate Obstructive Sleep Apnea (OAS). In one third of the patients
the anoxia induced by the apnea causes a suppression of the vasopressin
hormone that in turn causes the kidneys to exude large amounts of water
even though there is no need to rid the body of impurities. That by itself
would not have caused so many sleep interruptions. But because the radioactive
seed implants had weakened my urinary system I had a problem. The severe
respiratory infection in late November made the apnea worse, hence the
crisis. Once I took care of the apnea my situation improved rapidly and
I was able to resume a normal life.
Before I go into specifics I should point out that I had several advantages
(compared to average patient) in dealing with my health problems. In the
early part of my career (roughly 1962-1977) I was involved in the mathematical
modeling of biological systems and I had significant interactions with
both research biologists and research MDs. At one time I was the principal
investigator of a grant from the National Institutes of Health and I had
a post-doc who was an MD. Part of my training included taking courses
in human physiology (classes where most of the enrollees were premedical
students who, by the way, did not do as well in the course as I did).
Therefore I was not in awe of the medical profession. I had also kept
my textbook on Medical Physiology that I had a chance to consult often.
In addition I received help from my daughter, a practicing clinical psychologist.
When I described my symptoms to her she was emphatic that my mood problems
were caused by a physical cause rather the other way around (the original
diagnosis by my doctors was that the frequent night time urination was
the result of "anxiety"). Maybe she was able to make a correct
diagnosis where others had missed because she was willing to listen to
the patient. Of course I was left with the challenge of finding the physical
cause. My oldest son (a neuroscientist on a medical faculty) also helped
me by emphasizing the need to straighten out the sleep problem before
looking for other causes. (After all, sleep interruption is a method of
torture used in interrogations.)
I should add that this recent experience is not the only instance when
my life was put at risk because of a misdiagnosis. Several years ago I
was experiencing stomach acidity and I went for advice to a specialist.
He ordered various tests including X rays of my digestive system after
ingesting barium (or somethig like that). He diagnosed my condition as
hiatal hernia claiming that he saw the abnormality in the X ray
(he even pointed something on the X ray to me). He prescribed various
antacids and these seem to help although never eliminate the symptoms
completely. I lived that way for several years until my heart surgery
in October 2000. One of the first impressions I had after I woke up from
surgery was that my stomach was no longer hurting. I mentioned that to
a nurse and she replied "oh yes, the feeling of stomach acidity is
often caused by heart problems because the innervation of the two organs
is close." I should add that I stopped taking antacids and I never
have had any stomach problems again. Here I had a symptom of heart trouble
that one physician misdiagnosed completely.
B. Dealing with the Medical Profession
Based on my personal experience, it seems that the gap between the best
and the worst physicians is wider than in most professions. It is true
that in every profession there is a range of competence amongst its practitioners.
In software engineering (mainly computer programming) the productivity
of the top people seems be ten times that of the weaker people. This was
first documented in an AT&T study of its staff in the 1960s and it
is holding true even now. Because engineers work for companies, the weakest
ones tend to be weeded out, either because their employers re-assign them
or because companies who employ too many weak engineers go our of business.
Medical practitioners often have their own practice and there is no one
to supervise them or to screen them out. Sure there are medical boards,
but by the time a physician loses his/hers license, he/she has done enormous
damage. Legal remedies deal only with extreme cases and that leaves many
cases of less than high quality medical practice out without remedy. Another
factor is that physicians are usually paid by insurance companies that
do not seem to pay close attention to the quality of the care given.
One shortcoming of some practitioners of medicine is their extreme self-confidence,
if not arrogance (sometimes bordering on disdain to the patient). Another,
even more serious, shortcoming is that diagnosis is usually based on the
most common cases. If you have symptom A, then the cause must be B because
that is the case with, say, 60% of the people who exhibit symptom A. Too
bad if you happen to be in the remaining 40% and your symptoms are caused
by something other than B. A doctor who is willing to sit down and listen
to the patient might be able to overcome such a limitation but few doctors
do that. The emphasis in "high throughput" that limits most
visits to 15 minutes or less making personal care unlikely. This is a
pity because as Sir William Osler (a Canadian MD, one of the founders
of Johns Hopkins School of Medicine) said: "The good physician
treats the disease; the great physician treats the patient who has the
disease." Such personal attention seems to have disappeared
from current American Medicine.
The situation becomes even worse if your symptoms have multiple causes
(which was the case with me last winter). Superposition effects seem to
be beyond the grasp of many physicians. When I tried to explain the issue
to some of them they looked baffled and even impatient; it was clear they
thought I was wasting their time. The tragic side of this is that in older
people several systems may start functioning below the optimal level but,
because each system is still within "normal limits", the MD
cannot find what is wrong. It turns out that when physicians are puzzled
they tend to attribute the state of the patient to depression, hence the
myth of the "elderly depression". This was pretty much what
happened to me. My frequent night time urination was attributed to "anxiety."
The doctor had no patience with my argument that if anxiety was causing
my frequent urination, the problem should be have be worse durign the
day rather than during the night.
My own impression is that training of doctors emphasizes memorization
of facts rather than thinking and deductive reasoning. In essence, doctors
do diagnosis by table look up and this is why they have trouble dealing
with the situations described above.
There is another medical condition that seems to be poorly understood
by many medical practitioners. This is the possibility of multiple stable
states in a complex biochemical system. A simple example of the concept
is offered by the ordinary see-saw that can touch the group either on
the left or the right. Thus the see-saw has two possible states. A medical
example is when one takes a drug that is effective for, say, 12 hours.
It is possible that the state of the system after the drug stopped being
effective is not the same as the state of the system before the drug was
administered even though the drug has been completely removed from the
body. In my case it was the diuretic component of a hypertension medication.
Supposedly its effects did not last more than 12 hours and since I was
taking it in the morning it should have no effects at night. But when
my hypertension medication was replaced by one without the diuretic component,
it reduced the frequency of my night time urination.
You may say that I demand too much from doctors because the human body
is a far more complex mechanism than any technological device, therefore
my implicit comparison with engineers is unfair. Maybe, but engineers
are taught to say "I do not know". Doctors apparently are not
taught that. Many of the them are arrogant and dogmatic. Well, they cannot
have it both ways. If they want sympathy from their patients for
their tough job, they must also have sympathy for the patients who suffer
from a tough to diagnose ailment.
C. Medical Misconceptions
Medicine is governed by several misconceptions that sometimes defy common
sense. I had dealt in the shorter version with two of them, the definition
of "Normal Range" and the definition of "Risk Factors."
Here are two more.
Misuse of Statistics: On one hand, the medical profession
tends to rely a lot of statistics and on the other some physicians apply
them incorrectly. One often hears that "treatment X" is not
going to affect one's life expectancy but there are no words about how
"treatment X" affects the variance. (If you have not studied
statistics you may have trouble understanding this statement, but please
worry, because most medical practitioners do not understand it either.)
Several years ago I asked my doctor whether a new medication I was taking
was responsible for certain sides effects that I seem to be suffering
from. He said "no", I insisted otherwise, he took a look in
one of his books. He said "I was right, this pathology occurs as
a side effect in only 1% of the cases." Obviously, he did not realize
that 1% is a high probability. If there are 10,000 people taking that
medication, 100 of them will develop that pathology. There are also deeper
issues with the misuse of statistics in validating the efficacy (or lack
thereof) of medical treatments. See the article
by Dr. Ioannidis.
Age and Gender Groups: There are medical guidelines
that assign risk of illnesses to certain age and gender groups. The most
notorious case is the assumption that women are less likely than men to
suffer from cardiovascular disease. That has been debunked recently and
there have been several writings published about the case that I will
not dwell on it now. Another is the assumption that men under the age
of 60 do not suffer from the effects of enlarged prostate. I have heard
of a case of a person who happened not to fall under the guidelines, so
his doctors refused to treat him for enlarged prostate even though he
had all the symptoms. Eventually he went into shock and he had to undergo
an emergency operation.
D. How to Find the Right Doctor
Given this sorry state of affairs what is a person to do?
Dr. Groopman web site offers offers
a nice description of the characteristics of the right doctor that is
reproduced in the main page. But how can you find such a doctor?
I have listed some suggestions in the short
version. Here are a few additional comments.
I cannot overstate the need for educating yourself on health issues.
At the very least you should read a text on human physiology, if you take
such a course it is even better.
One obstacle in finding the right doctor for you that checking physician's
credentials is not as easy as it seems. New York State passed a law to
create a web site with doctor's profiles but several years later, the
web site is incomplete. Probably, the most reliable indicator of the quality
of a physician's training is the hospital where he/she was a resident.
But you have to find that information first and then you have to find
out the reputation of the hospital. One solution is to select a doctor
who is on the faculty of a major medical school. Physicians at such places
are far more likely to be up to date with the literature and the newest
defvelopments in their field. They are also more likely to be genuinely
interested in their profession and not consider it just as means of earning
a living. Unfortunately, many practicing doctors stop reading and do not
keep up with the new findings. Having a doctor affiliated with a medical
school may not guarantee high quality of care but it makes it more likely.
(All of my doctors now are either members of a medical faculty or of a
major medical center.)
E. Watch Out for the "It is all in your mind" Pseudo-diagnosis
"It is all in your mind" is a common and erroneous diagnosis
when a doctor cannot figure out your ailment. (See [JG_2007].)
I experienced such a diagnosis in November 2006 when a cursory examination
of my urinary system revealed no problems and the doctor decided that
my frequent night-time urination was the result of anxiety. I argued (too
meekly in retrospect) that anxiety would have been causing more problems
during the day but my argument was dismissed off hand. At that time I
did not know about the condition that made my body dispose of extra water
during the night and, obviously, neither did the doctor. After I accepted
the "in your mind" diagnosis I was prescribed and started taking
psychotropic medications that while they seem to help in the short run
(placebo effect?), eventually they seem to leave me worse off. That is
when I called my daughter (a clinical psychologist) who, after listening
to me, insisted that my problem was physical and not in my head. Of course
that left me searching for the physical problem but I reduced the psychotropics
and I felt better. (I stopped them completely after the diagnosis of sleep
apnea that in many cases causes excessive nightime urination.) What was
happening was that the psychotropics did not affect the source of my problem
(sleep interruptions) but made me feel drowsy and more tired during the
day.
While psychotropics have their place, these seem to be over-prescribed,
some times with tragic consequences. There have been several accounts
of young people committing suicide after taking an anti-depressant, seemingly
a paradoxical outcome. But taking a medication that is supposedly going
to help you and actually it does not, or even makes you worse, can push
a person to despair. I felt that way last winter, but I was cynical enough
to suspect the judgment of the doctors and ask for another opinion. I
also had family support that some of the young people in question may
not have. Any mis-prescribed drug is dangerous but psychotropics are particularly
so.
Unfortunately, insurance companies encourage their use because it is
by far cheaper to pay for a pill than for talk therapy. Given the complexity
of the human mind, it seems foolish to expect that a pill can fix a person's
problem. A competent psychologist can see the root of the problem and
guide the patient away from his/hers problem. For some people medication
may be needed only in initial period, until the talk therapy takes effect.
If one must continue on a medication it is imperative that the physician
and the psychologist agree on this course.
F. My Unsolicited Views on how to Improve Medical Practice.
Somebody may say that what I wrote above may be good advice for people
with a certain level of education but what about the rest of the population?
I claim that letting people know that they should not trust blindly their
doctor is a good advice and it will benefit all people, although in various
degrees. of course, it would be far better for everyone if the medical
profession overcame some of its problems. Several of these problems are
discussed frequently in the news media so I will focus on two that are
rarely discussed.
In my opinion, one weakness is the process of selecting who is going
to medical school. In many countries students are admitted to medical
school after passing an exam given at the end of their high school. They
follow a six to seven year curriculum. In the United States students enter
the medical school only after they complete a four year curriculum in
some other major and then they spend three years studying medicine. The
selection process relies on several criteria and one of them is the GPA.
Because of the large number of applicants people who do not have a high
GPA are eliminate in pre-screening and their applications are not seen
by the faculty. This biases the selection in favor of people who are good
in getting a high GPA and may have no other interest in medicine except
that it provides for its practitioners a relatively high income. Selecting
medical students after high school and then allowing for a higher attrition
rate is likely to produce more doctors who are genuinely interested in
medicine than the current system does. As I note earlier I have seen the
medical profession from various angles, not only as a patient but also
as a student in pre-Med classes as well as an adviser of engineering students
who were aiming for medical school.
Another weakness is the lack of hierarchy in medical practice. (Although
there is plenty of hierarchy in education and training.) Medicine is one
profession that makes limited use of various levels of professionals.
In recent years nurse practitioners have been added to the ranks but their
use is nowhere what it should be. There are may relatively few physicians
who can make a correct diagnosis in a non typical case. Ideally such people
should see a patient only in the beginning of a treatment and most of
the follow ups should be made by the next level of health professionals.
Here I assume that the treatment does not involve active interventions
such as surgery but it consists of medications and lifestyle changes.
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