An unhappy patient comes to a doctor to offer him an illness – in the hope that this part of him, at least (the illness) may be recognizable. His proper self he believes to be unknowable. In the light of the world he is nobody: by his own lights the world is nothing”
But if the man can begin to feel recognised and such recognition may begin to include aspects of his character which he has not yet recognised himself, then the hopeless nature of his unhappiness may have been changed; he may even have the chance of being happy.
John Berger, A Fortunate Man
“One of the greatest diseases is to be nobody to anybody”
After a few weeks of watching second year medical students talk with patients I have been wondering about where, when and how empathy is lost during medical education and clinical practice.
The students enjoy talking to patients and listening to their accounts of living with diseases such as Parkinson’s disease, fibromyalgia, depression, heart disease, and diabetes. They are moved by suffering and curious about patients’ lives and their life histories. By so doing, they show natural affective and cognitive empathy.
My patients enjoy coming in – they don’t have the pressure of a 10-minute appointment within which they have to condense their symptoms into a problem to be solved for a stressed doctor who is running late. They have up to an hour of conversation without a goal in mind. They are under no pressure to impress their doctor with their weight loss or better medication compliance. Seeing the students looking more anxious and even less sure of what to say than they are themselves, they enjoy a levelling of the usual differences in power and confidence and take the opportunity to guide and reassure the students. We call them ‘patient-educators’ in recognition of their role.
Epistemic justice in healthcare is when patients have sufficient opportunity to give an account of themselves and their symptoms and the meaning and significance that they ascribe to them. We see this in the patient student encounters and encourage it.
Cognitive empathy is the ability to understand another person’s life and experiences. Affective empathy is the capacity to be emotionally moved by another person’s experiences.
With time and experience of these kinds of conversations, students learn that often patients need doctors to ask ‘the questions whose answers need to be told’. Patients won’t just volunteer information unless they can trust them. Trust can be gained by the student proving, by the questions that they ask, that they are aware that certain illnesses are associated with symptoms that might be embarrassing, experiences that may be hard to talk about, feelings that might be shameful, social stigma, prejudice and alienation. My students, my patients and I learn this together.
How, why and when is this empathy lost?
Understanding grows with experience, but opportunities for informed, compassionate, curious questioning can be squeezed out by pressures of time and the demands of specialism.
Students are expected to ‘take a structured medical history’. Conversations which once followed cues, in an attempt to understand and make sense of experiences are gradually replaced by structured interrogations guided by computer templates.
When they qualify the consultation will be less about understanding than gathering data for the health-service they are working in – because information that can be coded as data can be used for performance management, quality improvement and financial remuneration. The fruits of empathy – stories about meaning, context and experience that are unique by virtue of their subjectivity will be buried in the electronic record as ‘free-text’ – only available to those who know where to look. To satisfy the need for data, symptoms are defined as disease – headaches become migraines, dry skin – eczema, joint pains – osteoarthritis, back pain – ‘lumbar disc degeneration’, grief – depression, destitution is coded as ‘generalised anxiety’ and people who have suffered abuse are labelled with ‘personality disorders’.
In trying to visualise these different demands on a consultation, the pressure of time, the structure of a medical history, diagnostic coding, and data surveillance, I imagine a pie-chart being divided into ever smaller slices – and am reminded that over time, the patient has been squeezed out. Epistemic injustice takes over.
In time, students will become doctors who have learned to distinguish illness and diseases they can treat from those they cannot. And this, rather than the nature and degree of suffering will be their chief concern.
Affective empathy is lost when clinicians become hardened to suffering. The first patient they meet with depression or a terminal illness can be an intensely moving experience, but over time, especially if they are exhausted and hurried, and unable to attend to their own emotions or reflect with their colleagues, threatened in an unforgiving culture, they may lose their capacity to be moved.
I think that empathy is lost in medical education and clinical practice. Perhaps one reason is because we don’t value the empathy our students have to begin with and don’t do enough to nurture it.
If we pay more attention to this as well as the factors that undermine it, we could do more to help it flourish.
I saw my GP recently and he announced with great satisfaction that the DWP had contacted him and that he was sure I’d get my benefit. I had to appeal. Was it that the DWP didn’t listen to him or was it that what he said wasn’ t as helpful as he thought? It doesn’t matter. What matters is that moment of looking at my doctor and knowing that it gives him a kick to help people like me. Making me feel I matter is as important to me as anything else he does for me. He treats me, a member of the precariat, demonised by the government and media for being sick and disabled, as a worthy human being. I hope that when he goes home at night he feels good about those patients he gave dignity to rather than unhappy about those (maybe the same) that he couldn’t fix.