Being a Patient Through a Doctor’s Eyes: Feeling Dismissed and Gaining a New Perspective

As a cancer patient, he felt dismissed by doctors. As a doctor, he felt powerless to change the system…

My young patient sat opposite me, unable to remain calm any longer. His left hand was clenched tightly, his right trembled, and red blotches marked his neck. He asked: “Why am I ill?”

This was not the first time. The doctors, nurses and I caring for him had answered by sharing what we understood about causes and risk factors. But his question was not technical; it meant more than that.

He resented being ill and hated being different.

His diagnosis felt unfair. He wanted to attend music school, send pictures to friends and fall in love. Instead, he was in hospital so that treatment for a chronic disease could be optimized while his doctors, including me, monitored him.

He felt his diagnosis had taken over his life.

I know that feeling. I was diagnosed with colon cancer in my 20s. There was no family cancer history, and apart from cancer I was fit and healthy. I was busy starting a business in Beijing and in a new relationship.

Cancer ended my travel and work. I had radiotherapy, chemotherapy and surgery, wore a colostomy bag for 10 months, and subsequently developed serious blood clots in my lungs.

While trying to survive, I felt I was sitting on life’s sidelines. I watched friends go to parties, plan families and succeed at work. As I watched chemotherapy drip into my arm, felt nauseated or lay awake at night, I asked myself the same question my patient had asked: Why am I ill?

Being ill is frightening. I wanted my doctors to ask how I felt, but most did not. I wondered whether their apparent indifference was real.

After treatment, I knew I wanted to become a doctor: to return to the system that saved me and help others. I also wanted to understand why doctors failed to understand my experience of illness. During rushed rounds, or at other times, they might ask a cursory “Do you have any questions?” or fail to show empathy. I always wondered whether doctors truly understood illness: what was it like to be a patient?

At medical school I found one reason: patients’ voices were missing. Patients appeared in textbooks and slides, but not as real teachers . For many young, intelligent, healthy colleagues, illness was simply part of a textbook.

Doctors sometimes become ill and later write about how their perspective on medicine changed. Alone and confused in hospital beds, they feel what their patients feel. They say they want to be different doctors afterward.

Why Do We Wait for Doctors to Become Patients Before They Understand Illness?

Empathy can be taught. It can be developed by including more humanities in medical school and opportunities for students to share stories. But the ultimate teachers are right in front of us: patients. Unfortunately, they are not involved enough in medical education. During senior doctors’ hurried rounds with groups of students, patients are usually passive participants.

Patients Should Be Teachers

They should be as important as any specialist professor and invited to teach students. Why are there no discussion groups led by patients with serious illnesses? Why are patients not involved in anatomy and physiology teaching? This contact could be reinforced by immersive experiences simulating what patients feel when receiving care. I believe developing doctors’ empathy and attentiveness could protect them against burnout or help them cope emotionally when patients are not doing well.

Some research suggests medical education makes future doctors less empathetic. As students and trainees progress through medical school, their initial compassion increasingly gives way to cynicism and ego. There are several reasons, including what I have come to see as hostility within medical training. I have watched colleagues withdraw to protect themselves from seniors, inappropriate behavior, bullying and a system that sees them as rows on a screen rather than real people.

Not Everyone Needs to Become Ill to Understand What It Feels Like. I do not have my young patient’s disease, but I can draw on what illness taught me as I encourage him to persevere.

“I’m sorry this has happened to you,” I tell him. I say I can see his frustration and that it is normal to feel the diagnosis is unfair. He says no doctor has told him these things before.

I am not changing his mind, of course, and I have no words that will make him feel at peace with his experience. But I should not have been the first doctor to validate him this way.

*

The article above is a translation of Dr. Ben Bravery’s Guardian article, “As a cancer patient, I felt dismissed by doctors. As a doctor, I am desperate for the system to change”.

*