Why patients should be part of medical training from day one

Doctors need not wait until they get sick to understand what it is like on the other side

The man beside me was dying. Pain kept him awake most of the night. He would repeatedly ask to see a doctor and beg them to euthanise him. They had run out of medicines to control his pain and his lung cancer was now too advanced for treatment. He was dying, and it hurt, and there seemed to be little anyone could do. The man was in his 80s, I was not yet 30 years old — we both had cancer.

I was also in pain. I had had surgery to remove a large bowel cancer and, in the dead of the night, I would panic: what if my pain never goes away? Am I going to end up like that poor man? He was moved a few days later, out of my room of four beds. I lost count of the number of patients that came and went.

I was supposed to spend only 5 days in hospital after surgery, but I ended up staying for 25. The two pieces of bowel the surgeons reconnected after removing the tumour had sprung a leak. It took a couple of weeks to work out what had gone wrong. During this diagnostic hiatus, I was left wondering, feeling more ignored with each passing ward round.

I vomited during and after every meal. I lost 16% of my body weight. Just the thought of trying to eat would send my stomach into spasm. A senior nurse reviewed my blood results during ward rounds one day, and threatened: “You need to start eating or we are going to put a nasogastric tube in!” As if I were choosing not to eat.

These shortcomings in my care, as perceived by a patient in pain and fear, were balanced by fantastic parts of the health system, such as the music therapist who took song requests on my relationship anniversary or the speed with which I was shuffled from radiotherapy to surgery to chemotherapy.

So moved was I by the ideal, and less than ideal, components of our health system, that once I finished treatment, I decided to become a doctor myself. My goal: to help others as I had been helped, while fixing some things along the way.

I entered medicine with intimate knowledge of where the system can let you down, and an awareness that patients often suffer unnecessarily. For others in the profession, this insight comes much later. A growing number of doctors have discussed “crossing the line” and becoming patients. Oliver Sacks talked about being able to “speak as one of them” following his melanoma diagnosis;1 Paul Kalanithi captivated the world with his cancer memoir;2 and Melbourne-based neurosurgeon Michael Wong touched on this topic when writing about his incredible return to practice after being stabbed.3

A common epiphany among doctors who end up sick is that they realise, for the first time, what it feels like to be ill and in the hands of others. They experience our fear, confusion and, sometimes, anger, which goes on to inform their medical practice. They become advocates for patients, and practise medicine beyond the next blood test or scan.

That these doctors share these experiences is a wonderful gesture. And the discussion generated among the medical community by these stories shows that they really do have an impact on other doctors. But what if we didn’t have to wait for doctors to get sick to empathise with the experiences of patients?

I believe that engaging patients and connecting with their words and experiences should begin on day one of our training. I’m currently in my final year of a 4-year medical degree. In the pre-clinical years, the emphasis is on core subjects such as anatomy, physiology, pharmacology, and the diagnostic process. There is less focus on the actual people we will one day be healing. We talk about theoretical patients, role play among ourselves, and sometimes hear patient stories from our tutors. But we do not actually hear from many patients.

As part of formal teaching at my university, so far, we have met only a few patients or patient advocates. And on those occasions, the effect on my cohort was palpable. There was the mother of a man with schizophrenia who cried as she recalled watching police force her son into the back of a wagon. And the man with Parkinson disease who showed us the pump that continuously fed medicine into his body so he could walk with ease. His wife then talked of their depression.

As students and doctors we are surrounded by resources better than any textbook on how to empathise and connect with patients: the patients themselves. This training should begin in university, where patients, carers and advocates address students as formal components of the curriculum. This approach would give patients a voice at the very foundation of doctor training, before the enormous power difference between doctor and patient develops. Importantly, it would acknowledge patients as teachers of doctors, as necessary as any textbook, journal and exam. It would put patients at the centre of the teaching of patient-centred care. For doctors, it could mean greater knowledge recall, understanding, empathy and rapport.

Indeed, every patient is a lesson in what is working or not working in our health care system. We need look no further than the end of a stethoscope to find out what it feels like to be “on the other side”.