Primary Care Providers and the death of Bonnie Rogers

This is part of my series of posts about the death of my friend Bonnie Rogers.

As I reported in the post Timeline of Bonnie’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 House).

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 seriously.

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.

Related posts:

1. Timeline of Bonnie's death
2. Bonnie: Diagnosis
3. Massachusetts health care