The young patient sitting across from me is no longer calm. His left hand is clenched in a fist, his right one is shaking. Red blotches have broken out on his neck.
“Why am I sick?” he asks.
This isn’t the first time he’s asked this question. The doctors and nurses looking after him have each answered, sharing what we understand about the causes of his illness and his risk factors. But his question isn’t a technical one, it’s bigger than that.
He resents being ill, he detests being different.
His diagnosis feels unfair. He wants to be studying music, sending pictures to friends, falling in love. Instead, he is in hospital having his treatment for a chronic disease optimised while doctors, me included, monitor him for medication side-effects.
He feels like the diagnosis has taken over his life.
I know this feeling. I was diagnosed with bowel cancer in my 20s. I had no family history and, apart from cancer, was otherwise fit and healthy. I was building a business in Beijing and was in a new relationship.
Cancer ended my travels and business. And what it didn’t ruin it ground to a halt. Major illness has a way of doing that. I had radiation therapy, chemotherapy and surgery. I had a stoma for 10 months (a bag to collect faeces) and after all of this, I developed large blood clots in my lungs.
While trying to stay alive, I felt as if I was sitting on life’s sidelines. I watched on as my friends got to party, got engaged, plan a family and do well at work. As I lay watching chemotherapy drip into my arm, waiting to feel nauseated, or when suffering insomnia at 2am, I would ask myself the same question my patient was asking me: why am I sick?
Being sick is scary. I wanted my doctors to ask me how I was feeling, but they mostly didn’t. At my lowest, I wondered if their inattentiveness was in fact indifference.
Once my treatment was over, I realised that I wanted to become a doctor. I needed to give back to the system that saved me and help other patients. I also wanted to understand why doctors didn’t seem to always “get” my illness experience. Whether it was a rushed ward round, a cursory “Got any questions?”, a reliance on technical words when explaining things to me, or a lack of empathy, I had often wondered if doctors actually understood sickness; what it was like to be sick.
When I went to medical school I found one reason why that might be – there was a distinct lack of patient voices. Patients were in our textbooks and on slides in lectures, but they weren’t included as genuine teachers. For many of my young, smart (and healthy) colleagues illness was the just stuff of textbooks.
From time to time, a doctor will get sick and then write about having their view of medicine altered. They find themselves in a hospital bed, maybe in a busy emergency department, alone and confused. And they suddenly feel what their patients feel. Now, they declare, they want to be a different kind of doctor.
These experiences are valid, all experiences of illness are valid, but these accounts from doctors miss the core problem.
Why are we waiting for doctors to get sick in order to understand sickness?
In addition to discussing how much better they understand their patients now, and celebrating the extra empathy they now have towards patients, they should be disappointed in the system that taught them.
When I read the first-hand epiphanies of doctors I think of their patients. The patients whose illness experience they may have dismissed. The families who waited hours to have a doctor rush in for a few minutes and then leave. The patient who complained about pain, only to have a doctor roll their eyes.
Empathy can be taught. It can be cultivated at medical school by including more humanities subjects and creating opportunities for students to share stories. However, the ultimate teachers of empathy are actually right under our noses – patients. Patients aren’t included in medical teaching to the extent they should be. Mostly, patients are passive participants while in hospitals, as senior doctors bounce from bed to bed with a group of students in tow.
Patients should be elevated as teachers. They should be invited to lecture and teach students, as important as any professor of medicine. Why aren’t discussion groups led by patients who have major illness run alongside tutorials on anatomy and physiology? This contact with patients can then be reinforced with immersive experiences designed to simulate what patients feel while receiving healthcare. I believe paying attention to the empathic skills of doctors may help protect them from burnout or cope with the feelings they experience when patients don’t do well.
Some studies have suggested that as they progress through their medical training, future doctors become less empathic. As students progress through medical school, the compassion they started with is replaced by cynicism and ego. This is for several reasons, one of which must be what I came to see as the hostility built into medical teaching and training. I watched as my colleagues withdrew, protecting themselves from seniors, inappropriate behaviour, bullying and a healthcare system that sees them as lines in a spreadsheet rather than actual people.
Not everyone needs to get sick to appreciate what it feels like. I don’t have my teenage patient’s illness, but I can draw on what my illness taught me when encouraging him to hang in there.
“I’m sorry this happened to you,” I say. I tell him that I can see he is frustrated, and that it is normal to think that his diagnosis is unfair.
He tells me no doctor has ever said this to him before.
I don’t change his mind of course, nor do I have the words to help him feel at peace about what he’s going through. But I shouldn’t have been the first doctor to validate him in this way.
Dr Ben Bravery is a cancer survivor and a doctor. His memoir, The Patient Doctor, is out now through Hachette