What do doctors do when their patients’ pattern of symptoms don’t appear in medical textbooks? The top ten complaints of patients to primary care physicians in UK include “tired all the time”, dizzy spells, headache and non-specific abdominal pain.
When I was working as a family doctor in Leicester, I could not make an accurate diagnosis based on pathophysiology (how a disease affects the workings of the body) in more than half my patients. “It’s probably just a virus,” I might have said. Or I could have been more honest, saying, “I don’t know what’s wrong but I’ve listened to your symptoms, checked you over, done some investigations and I can’t find anything seriously wrong. Come back if things get worse.”
Referring such patients to a hospital specialist rarely results in a diagnosis. The patients are subjected to more expensive and invasive tests, “just to make sure,” and they end up being sent back to their GPs, often more anxious and not reassured at all. “Maybe my condition is so rare that they haven’t done enough tests?” they might think. More than a third of patients referred to secondary care receive no precise diagnosis. On the other side of the coin, about a tenth of the patients, who were told nothing was wrong after seeing neurologists, were eventually diagnosed a decade later. And of course, neurotic patients are not immortal; we all have to die of something.
I don’t for a minute think that all these patients were fabricating their illness or malingering. With adequate time, good consultation skills and using a biological-psychological-social model of disease, health workers can often understand why these patients are unwell. Many have psycho-somatic disorders, when mental stress can provoke physical symptoms. As doctors, we can’t fix patients whose problems have social causes, such as lack of employment, loneliness or housing.
Being a glutton for punishment, I decided to specialise in this group of patients. I was assisted by an excellent psychotherapist, Lorraine Parker. My role was to have a long consultation with the patient after poring over their extensive medical records, looking for clues of a missed diagnosis or a clinical stone unturned. I would try to reframe the patient’s complaints so they would agree to have half a dozen therapy sessions with Lorraine. “We might not know what’s wrong, but we can try to help you cope with your symptoms.” Once therapy was over, the patient would consult me again to discuss future management. Rather than consulting any doctor, they would try to see the doctor who knew them best. Which was usually me.
Our plan was to assess how often these patients consulted GPs prior to the intervention, how often they saw specialists or were admitted to hospital, how much medication they were prescribed and investigations carried out, comparing this with what happened in the following year. We were hoping that the cost of the pilot would be vindicated by future reduction of health care costs.
Well, that was the plan. I didn’t mind taking on the “incurable” patients (one of whom gave me a talisman of St Jude, patron saint of lost causes), but I wilted under the strain of my wife’s final illness and left general practice a year after she died.
Are things different in Swaziland? Not much. Probably the most common complaints in our clinic are “sides pain”, pain all over the body, and headache. What on earth is sides pain? Backache which has migrated? I still don’t know. Most patients do not expect an explanation for their symptoms, just the medicine to cure it, preferably by injection. If you are a nurse seeing sixty patients a day, the temptation to dish out painkillers, vitamin pills, calcium tablets and other placebos, is irresistible.
As a doctor, I have the privilege of being able to spend more time with patients, so I can delve a bit deeper into their psychological and social situation. When I am using a translator, I am never quite sure how my strange questions and comments have been phrased or interpreted. Translators often feel uncomfortable asking non-medical questions on my behalf. They don’t like seeing patients become emotional and crying.
Virtually everyone will admit to being under stress. There is 40% unemployment here. Those lucky enough to have a job can find working conditions very tough. The massive loss of population from HIV/AIDS and tuberculosis over the past twenty years has disrupted family life. Marriage is less popular and many children are born to single mothers, often without support from absent fathers. The patients usually accept that their medically unexplained symptoms are the result of stress. But they still want medication. I might be able to resist this, using the “doctor as drug” for the treatment.
Patient narratives are often very similar to those in UK:
A middle aged man, who is the only bread winner supporting his extended family, has been sacked. He is desperate for any work so he can continue to fulfil his responsibilities.
An elderly gogo feels lonely and sad because her children no longer visit and support her. “They have their own lives now, but they have forgotten who brought them up.” No wonder she can’t cope with the pain of arthritic joints.
Another young man who has to pay child support from his meagre salary but despite this, his former girlfriend refuses to let him see his son.
The public servant who has got into such deep debt that interest payments swallow up most of her salary.
An old lady whose husband died, who is facing eviction from her home because of a dispute among members of the extended family over the inheritance.
A young lady with pain in her knee, who has visited the three biggest hospitals in the country, seen countless doctors and no one can find anything wrong. Neither can I, but I discover that her auntie had a pain in her knee and ended up in a wheelchair, unable to walk. She is understandably terrified that she is going to suffer the same fate. I’m not sure my long interpretation and explanation of her symptoms has made a difference, but she accepts it.
A nurse referred a man in his 40s to me after several consultations for general weakness and feeling tired all the time. He looked very pale and had a slow pulse of 50 beats per minute, so while we were waiting for the results of some blood tests, we had a chat. He revealed all the typical symptoms of depression, hopelessness, sleep disturbance, loss of weight, energy and appetite, low self esteem, early morning wakening, crying, social isolation, etc. He even admitted that he had tried to hang himself.
Just as I was thinking that ordering the blood tests had been a waste of time, I discovered his haemoglobin was just 5g/dl (about a third of the level it should have been). He was severely anaemic, requiring a blood transfusion. The psychosocial counsellor who saw him took a better physical history than I did, and he admitted that a hospital specialist had wanted to do a colonoscopy because of rectal bleeding. The patient had refused to have the test done, almost certainly because he was depressed. This medicine business can be tricky sometimes.
Perhaps one of the most challenging patients was a man I met last month. He was in the treatment room, hooked up to a stuttering nebuliser, cloaked by vaporised salbutamol wafting from the mask over his face. He had been diagnosed with asthma by the nurse. He told her he had asthma, and his medical papers from other hospitals supported this assertion. Clearly, he was hyperventilating and about to keel over. I stopped the nebuliser, managed to get him up on the couch and examined him. No wheeze, plenty of air getting into his chest, in fact, too much air.
I tried to talk him down, explaining how his excessive breathing was making his symptoms worse. I wasn’t having much success so I asked the nurse for a paper bag, so he could rebreathe the expired air, correcting the low levels of carbon dioxide in his blood. All bags here are plastic. The nurse looked perplexed at my strange proposal. I had a thought, “Can you please bring me a large brown paper envelope from the office? A used one will do, it doesn’t have to be new.”
I folded the open end of the envelope over the man’s face and tried to get him to reduce his respiratory rate. After five minutes, the glue from the envelope flap had stuck it to his nose, but he still had muscle cramps in his chest and tingling “pins and needles” in his hands and feet. The queue of patients outside was building up and I wasn’t making much progress with my talking cure.
When in doubt, use drugs. I gave him 10mg of oral diazepam, a tranquilliser, and within a few minutes he was sleeping like a baby, with a normal respiratory rate.
While he was resting, I took the opportunity to read through the disorganised mass of papers which constituted his patient-held medical records. More than a year ago, he attended a hospital with a severe headache and managed to persuade the clinician to order a CT scan of his brain. This was essentially normal, though the radiologist had commented that his cerebral ventricles were slightly dilated. Usually, this is of no significance. He took the result of the brain scan to another doctor, who misread the report and thought it showed dilated heart ventricles, indicating a heart muscle problem or cardiomyopathy. This doctor referred him to a cardiologist. The unfortunate man had attended with a headache and then had been told he had a serious heart problem.
His panic attacks with hyperventilation started after this shock diagnosis and unfortunately health workers diagnosed this as asthma. The routine treatment for this here is thirty years out of date: oral salbutamol tablets for prevention. This medication is a heart stimulant and would cause his hands to shake. Inhaled corticosteroids, the standard preventive treatment in UK, are very expensive.
An hour later, he woke up and I had a long talk to him debunking his medical problems. Although he nodded in agreement, I wonder how much of my interpretation he would retain. He almost certainly doesn’t have asthma, cardiomyopathy or brain damage. Just like in UK, I offered to see him in future if his symptoms returned. Personal continuity of care is my most potent weapon. And diazepam.