“She’s a really interesting patient!”
The doctor visiting the lady in question at home is correct. Nothing about her illness either has been routine. The progression of her disease has confounded her regular doctors for months. Nothing about her condition is normal. Medications have not worked as expected. The original diagnosis — Parkinson’s — is in question. All my training and expertise is inadequate, for I am an ENT surgeon, not a neurologist. The only reason I am involved is that the lady is my mother, and this makes the uncertainty doubly difficult.
What makes my mother so interesting? The answer is that she falls outside the bell curve of normal patterns of disease, and that makes both accurate diagnosis and treatment of her condition difficult. As a result, two years of uncertainty and deterioration have gone by. The happy ending in our story is that the doctor is a specialized member of a team, qualified to make this observation, to re-examine the diagnosis, and to guide the medication to where it facilitates and does not cause harm. And we are lucky, because specialists like this are as rare as hens’ teeth, and to have them do a home visit in an area far removed from their normal environment is as good as winning a lottery.
Who wants to be an interesting patient? Interesting in the medical context implies that that the disease process is itself highly unusual, or has broken the rules of normal behaviour, or is more pronounced than normal. As we doctors often say, our patient has clearly not read the textbook description of his disease.
So much of medical diagnosis is in pattern recognition, to the point that advanced tests and special examinations are unnecessary except perhaps for confirmation and documentation. “Common diseases occur commonly” is another memorable and useful statement, meaning that an unusual presentation of a common disease is more likely than the appearance of a rare disease. For example, in an area where tuberculosis is common, any new lump on the body may well be a manifestation of TB, and doctors do well to adapt the process of investigation to exclude common conditions like TB first.
But the patient with an interesting condition breaks the pattern, and many doctors may not recognise a disease early due to the unusual presentation, symptoms and clinical findings. This is where specialist knowledge and experience come to the fore, because the exclusions to the normal patterns may be recognised sooner, but certainly not all the time. And PCP’s may have been a filter mechanism to screen out the mundane, making the specialist’s job easier.
I think back to interesting patients I have come across in my earlier career: the acute inferior myocardial infarction that presented with acute left earache only, the large acoustic neuroma with no tinnitus or hearing loss, and the “minor” head trauma who months later had a skull x-ray that showed a knife blade buried deep in the brain. Some were diagnosed by luck as much as by clinical skill. I shudder to think of how many times I have missed the unusual diagnosis.
There are some pros to being an interesting patient. The doctor’s attention may be stimulated, and his interest raised above the normal humdrum of ordinary practice. Having an interesting pathology may enable the patient to jump the queue in referral to other specialists or hospitals, particularly if there are research interests.
But the cons outweigh the pros. Diagnosis may be made later than expected. Treatment of unusual pathologies is likely to be harder or more extensive. It is in this realm of medical care, in fact, where the good doctors rise above the ordinary, where they earn more than their keep.
Primary care physicians are particularly challenged, trying to sort out the unusual from the mundane. Many serious diseases start out “small,” with symptoms that are commonly innocuous. In a lifetime of practice, a PCP may see a handful of patients with brain tumours, or leukaemias, but tens of thousands with headaches or tiredness. No wonder interesting cases are often diagnosed late.
For all doctors however, the penalties for error are profound. Patients expect their doctors to have “trained perfection” – meaning that, by merit of our training, we are expected to recognise these rare and interesting cases as early as the mundane. The inescapable fact is that, without perfect care and awareness, in many cases we don’t.
The backlash of litigation has meant that doctors may see every patient as potentially being outside the box of normality, and, just to make sure, we will investigate and cover the unusual possibilities. So recurrent headaches initiate MRI brain scans — just to make sure. This is not economically viable.
I don’t have a solution to this problem. I’m openly relieved every time I pick up something out of the ordinary in my patients.
I also know that I don’t want to be an interesting patient should fate decide that I fall ill one day. I’d rather be the standard, boring type please.
Martin Young is an otolaryngologist and founder and CEO of ConsentCare.
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