Viewed as mediator between the patient and his pathology, the role of physician is an unenviable one, constantly balancing the sometimes conflicting requirements of clinical judgement with empathy for his patients. Nowhere is this balance more tricky than in general practice where physicians often have lifelong relationships with individuals and families. But does this familiarity help? The argument goes something like this: The physician must establish a firm and accurate picture of symptoms, signs and treatment options. It is also anticipated that, as much as possible, they wield this knowledge with understanding and empathy for the patient’s plight. Of course, empathy comes at a price. The more doctors put themselves in their patient’s shoes, the less emotionally detached they become. Once detachment is compromised, judgement soon follows. Impaired judgement translates into less rational decision-making which, in turn, inevitably means poorer care. Taking the argument to its logical extreme, empathy is bad, an obstruction to best medical practice.

This model, if model is the word, certainly held sway a generation ago. My father, a Yorkshire GP for some 40 years, subscribed to a rather detached approach based on sound clinical judgement. He was a fine diagnostician in his own patrician way. His practice partner  was an entirely different kettle of fish. What he lacked in clinical skills, he made up with attention to wider patient concerns,  bandying about words like “holistic” and “dialogue”, terms unheard of in 1960s Yorkshire. The practice receptionist would greet each patient through the surgery door with the simple, if unsettling, enquiry “have you come for a cup of tea and a chat or do you want to know what’s wrong with you?” The implication was that you could have the one but not the other.

This of course is tosh.

I would go further and say that not only are best clinical judgement and empathy with your patients compatible with each other, but that they are necessary components of genuine patient-centred healthcare. The issue is how this can best be achieved. The first part is easy – just pay attention in medical school, take notes, ask questions, offer opinions and learn from your mistakes. Easy.

The second part – empathy with patients – is a bit more of a challenge. I learned it the hard way.

For a couple of decades at the tail end of the last millennium, I was a researcher and academic at what was then the London Hospital Medical College in Whitechapel, attached to the Royal London Hospital. My main interest was in the function of monoamines such as serotonin and dopamine in the brain. Inevitably it wasn’t long before I was drawn to the basal ganglia, where I concentrated on the function and control of dopamine in Parkinson’s disease. In all, I spent 23 years at “The London” rising from PhD student to Reader before leaving academia in 2003. Three years later, in one of those coincidences in life that you can do without, I was diagnosed with Parkinson’s.

Despite the fact that I had lectured on Parkinson’s to a generation of medical students, I still somehow managed to persuade myself for a year or so that the symptoms I had amounted to something else. Somehow I did not connect the way I was feeling with the symptoms I was exhibiting. It is perhaps a bellwether of the isolation of academic research that the first actual patient I met with Parkinson’s was myself.

So what does it feel like to become a patient with the same condition you have researched and taught for more than 20 years?

For me it was initially a challenge to marry up the externally observable (objective) manifestations of the condition with the very subjective experience. But this difficulty inevitably spawned a wider interest in the  dynamics of patient experience and physician assessment. Parkinson’s is a good test bed for this – the physical manifestations of the illness are relatively straightforward for the physician to understand, comprising purely motor symptoms. Yet the full orbit of the condition is only apparent with detailed interrogation of the patient experience, thus unmasking the many non-motor symptoms that determine quality of life for the patient. These, when inadequately appreciated by the physician, create a false clinical picture of the condition and lead to poor decisions on management. It is a phrase oft repeated among the Parkinson’s community that “physicians know what Parkinson’s looks like but only patients know what it feels like”. Put even more succinctly “if you haven’t got it, you don’t get it”.

Taking that philosophy to its logical end point, the people best equipped to describe Parkinson’s and to influence its treatment and management are of course physicians who have the condition itself. Although patients can and do eloquently describe the personal burden of Parkinson’s, their words hold little sway with the medical community. Physicians listen to other physicians. That is the way of things. And if we, as patients, want our opinions to be taken seriously, this small band of patient-physicians represents a powerful conduit for transduction of the patient experience into clinical influence.

Of course Parkinson’s is just an example. The same principles apply to most if not all other conditions. If we want to know what is important about an illness, we need to turn it inside out.

If you haven’t got it, you don’t get it

2 thoughts on “If you haven’t got it, you don’t get it

  • March 9, 2017 at 2:16 pm

    Yes, professionals with PD are uniquely positioned to understand and to be understood by both their professional peers and other PWPs. Thanks for sharing a bit of your own journey in this regard, Jon…

  • March 7, 2017 at 6:52 pm

    Inside out taught me so much in such a short time. We need patient lead clinics and services to educate people like me.


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