This is part of my series of posts about the death of my
As I reported in the post Timeline of
Bonnieâ€™s death, she was having unusual problems with lack
of energy for a couple of months, and serious problems breathing
for a couple of weeks before she managed to call her doctor and
make an appointment.
I had urged her to talk to the doctor as soon as she told me
about the breathing problems. I didn’t feel vindicated by her
doctor’s response, which was in fact a complete misdiagnosis,
and not at all what they do on doctor shows on TV (except occasionally
She wrote me:
The doctor says I have mild anemia and should take an iron supplement,
but she has ordered some kind of test for pulmonary hypertension as
well as a colonoscopy some time in the near future. Pulmonary
hypertension is relatively rare, but from the descriptions on the
internet it makes sense that it might be the underlying problem. I
don’t remember what the name of the test is.
Please avoid mentioning pulmonary hypertension [to the group]. … I’d like to avoid it at least until I
really know what’s going on. I’m going to try to just speak
nonchalantly about anemia if the subject of my health comes up.
I was quite sure that Bonnie’s breathing problems weren’t “mild
anemia”, and in any case even mild anemia in a post-menopausal
woman usually points to something else wrong. (That doctors accept it in
menstruating women is a problem, but that’s another post.)
But the doctor had never seen Bonnie before, and she was obese
enough that it wouldn’t surprise someone who didn’t know her that
she should get out of breath easily. Those of us who knew how
seldom she complained about anything, and how active she managed
to be even with major disabilities, knew that her complaining
about being out of breath meant that something serious was wrong.
I like to think that my own doctor, whom I’ve been seeing since
1995, knows how seriously to take my complaints, but she might
well do only the minimum testing on someone she didn’t know with
an obvious diagnosis of obesity compounded with anemia, too.
But to continue Bonnie’s story, when she went to the emergency
room the next day, she was admitted to the hospital with a
diagnosis of blood clots in the lungs. The testing in the
hospital lead to a diagnosis of cancer in the abdominal cavity.
When they released her, they made appointments with both the
primary care physician (PCP) and an oncologist, neither of which was she
able to keep because she needed to go back into the hospital.
After I got the power of attorney and started getting Bonnie’s
mail forwarded to me, I got several notices of appointments, and
postcards saying to call for checkups, even after she had died.
So the record system leaves something to be desired.
This is a clear case of a managed care system not managing a
serious illness very well. I personally have always used managed
care when it was available to me, and I think it works very well
if you do some of the managing yourself. As I said, I’ve kept the
same doctor (actually a nurse practitioner) for well over a
decade, and when something serious happens that she isn’t involved
in, she seems to get records and ask me questions about what she
wants to know that isn’t in the record.
Bonnie had had to switch
plans in the year previous to this story because of going on
medicare, and had not been especially aggressive about getting an
introductory appointment with her new doctor. I’d say one of the
morals of Bonnie’s story is that this was a mistake, and she
should have tried to establish an ongoing relationship with a
primary care provider. Then she would have felt better about
making the appointment when she first noticed problems, and maybe
the doctor would have known to take her complaints more
I should add that the obesity probably contributed to this part
of the problem, too. When Bonnie saw a new doctor, she was
usually given some fairly routine advice about weight loss, which
she had of course heard and thought about many times before, and
usually didn’t find she could communicate her disagreement with
its application to
her own case very well in that context. So she didn’t look
forward to the initial encounter with a PCP.