The problem with patients is they don't always read the book. I mean, how dare they come in to the hospital or office practice setting with symptoms that just don't fit any known disease, or don't make physiologic sense? These are the kinds of patients often featured on the medical drama shows. They are what make the practice of medicine challenging, frustrating, and fun.
Yes. There is fun in meeting a patient who has been sick for a while, with a problem that hasn't been identified, coming to a diagnosis, starting treatment, and watching that patient get better. There is fun in using your brain that you have tried to hone over the past 30 years in such a way that you have that "Aha" moment and look like you are really, really, smart. It is fun to imagine you are the star of the TV series "House" and can diagnose a patient without a stethoscope, a chart or the benefit of any tests. However, most of us never make such unusual diagnoses, and we become frustrated with patients who continue to defy our brain power and refuse to let us in on the secret their bodies are hiding from us.
Well, no its not really fun when the doctor is stumped. Certainly not fun for the patient or his or her family. Nor fun for the nursing staff who must face the family every time they walk in the room without an answer. Families get frustrated. Doctors get frustrated. Nurses get frustrated. Patients get scared. There is nothing worse than being ill, perhaps getting even more sick, having no diagnosis, and thinking the worst. No one responds very well when you don't have a diagnosis. Not the child, the family, his friends, his teachers, you name it. They don't understand. They think either the child or the parent is exaggerating or maybe making the whole thing up. I mean, doctors are so smart these days, and we have scans for everything, we must be able to know what is wrong.
Otherwise, we must not be very good doctors.
Even insurance companies feel this way. And it can be rather pathetic.
A number of years ago, when I was practicing in a different hospital, different state, I took care of a little boy who had an unusual liver problem. It had no name. The best pediatric gastroenterologist in the city was providing oversight of the evaluation and care of the child. He ended up leaving the hospital without a diagnosis, but being followed carefully by the gastroenterologist. His insurance company did not have a contract with our doctors or hospital, but because they didn't have a contract with any pediatric gastroenterologist who could provide care for this unnamed disease, they covered his visits, hospitalizations and tests. After a few weeks, he was back in the hospital with the sudden onset of vomiting and dehydration. Through a series of additional evaluations we discovered that he had cancer--childhood leukemia. We admitted him to the PICU, started his chemo and assured his parents that he would have a rough time but he would most likely have a good outcome. The next day I saw his mother, whom I had gotten to know quite well through his several admissions, crying in the corridor. When I approached her she told me: "I will sell my house if I have to."
The insurance company representative called and told the mother that now that the child "only" had leukemia, he had to be transferred to a local community hospital, where they had a contract with a physician to provide chemotherapy. I asked the mom if she wished her son to be transferred. She said that she just wanted to stay with us. She knew us. She trusted us. Her son trusted us (even if he didn't like us all the time). She would do whatever she needed to do to continue getting his care over the next 18 months or so in a place where she and her husband felt comfortable. Even if it meant selling their house or going bankrupt.
I called the insurance company.
I told them that I would not be transferring the child (who happened to have a very low platelet count and would be at a high risk of internal bleeding if he were moved under such circumstances). I told them I would not transfer him even after the platelet transfusion. I told them the parents did not wish to have their child move, that he had leukemia PLUS liver disease (and we didn't know if it was caused by his leukemia--very unusual at this stage of disease and at this child's age--or not). I assured the representative that IF he needed to be moved for a service we couldn't provide I would find a way to do that safely, but I had no desire to do so for no good reason. I told the rep that I expected them to pick up all the costs of the care. I said all this in quite a stern tone, and perhaps with a bit of emotion in my voice.
Our little patient was able to recover from his acute illness, and proceed on a course of outpatient chemotherapy. He never had to switch doctors. He bonded, as most children do, with our inpatient pediatric staff and the staff in the outpatient pediatric heme/onc clinic. He got better, and was cured of his cancer. His liver disease resolved. We never did discover whether it was related to his leukemia or not (for the docs reading; his biopsies were all normal). The last time I saw him, he was happy, well, and growing. He told me he wanted to be a doctor when he grew up. I hope he is well on his way to that goal. I hope he will be the kind of doc who will fight for the rights of his patients and their families, and "do the right thing."