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Lived experience guides patient doctor

At 2 am during chemotherapy, while suffering from insomnia, Ben Bravery had a light bulb moment. To start the conversation with doctors about how things could be better with patients, he had to become one. In this Q&A about his new memoir, The Patient Doctor, he reveals just how far he’s come.

You were 28 when you were diagnosed with stage 3 colorectal cancer. What bowel cancer symptoms would you now advise people to never treat lightly or ignore?

Many gut problems have the same kinds of symptoms. I had diarrhoea, constipation, as well as blood in the toilet bowl. It’s important to speak to a GP if you have these symptoms and they persist – especially blood in the bowl. Other symptoms can include abdominal pain, bloating and not feeling “empty” after going to the toilet. A GP will be able to reassure you or order some tests to work out if anything is wrong.

How do you feel about the National Bowel Cancer Screening Program?

We are so lucky to have free bowel cancer screening in Australia. The kit is convenient and private. It doesn’t detect bowel cancer, just that there is a tiny amount of blood in your poo. This can be an early sign something is wrong.  When bowel cancer is caught early, over 90 per cent of people survive.

You want to change the system so patients can speak up and ask questions about their care and have it explained to them in simple terms. What are a few simple things patients can do to empower themselves in medical situations where doctors (and especially senior doctors) are mostly deferred to and assume knowledge and power?

It’s good to read about your symptoms online, but you should discuss what you read with your doctor. Take a notebook where you’ve written questions before the appointment. You can use this to record what the doctor tells you and any test results. If a friend of family member is free, take them along – an extra pair of ears can be important, and having someone familiar there can help you feel more confident expressing yourself to the doctor.

You write that you felt bullied on at least one of your rotations and point to a survey of nearly ten thousand junior doctors that found that 34 per cent had witnessed bullying or harassment in the last year and 50 per cent of that bullying was done by senior doctors. Given that the senior doctors can make or break a junior doctor’s career, how will this bullying ever be stamped out?

Things are changing. Many senior doctors are realising that the health of their colleagues and the junior doctors below them matters. As the conversation about mental health grows across society, it will also grow within medicine. There is still lots to fix though.

Injecting humanity back into healthcare is a great phrase. What would the healthcare system in Australia look like for patients and doctors if this “injection” was achieved?

In an ideal world the people in the system – patients, doctors and other care providers – would feel equally empowered. We would design places and systems alongside the people who have to use them. What does a waiting room feel like? What appointment length is a doctor comfortable with? Is there a way for doctors and patients to communicate outside of the clinic appointment? If you focus on the humanity in the system you can protect it – patients will heal with less frustration, doctors will feel more valued.

What needs to change to ensure a wider cross-section of people can study medicine and the communities they come from can receive equitable health treatment?

We should be training doctors who reflect the cultural and socioeconomic backgrounds of patients. Many people have rich experiences and an understanding of what illness looks and feels like, but they lose out under the current system that favours people graduating from private/selective schools who live in healthy parts of the country. Yes, grades are important – but so is a person’s lived experience, or their commitment to compassion, or their ability to connect with people.

You write that: “When done well, patient-doctor communication led to a more accurate version of a patient’s history, and helped doctors work out what was wrong sooner.” Why is communication so far down the pecking order in a doctor’s education and what would it take for it to be elevated?

Because it is not seen as important – communication’s an add on, a “soft” skill. Our exams measure our factual knowledge, and this is important of course, but it should not be the only measure of what makes a “good” doctor. As the curriculum has swelled, the things that perhaps doctors understood in the past – the value of conversation, how to best put a patient at ease – have been lost.

In one tutorial you invited fellow students to ask questions about your own cancer journey. What happened next and why is this kind of encounter so vital to a doctor’s training?

In sharing my story, I realised that my colleagues wanted to know more than just the facts about cancer. By marrying the facts with my illness story, they were able to get a fuller understanding of bowel cancer. The facts became real, they had a face and feelings associated with them. Only then could they empathise with someone with bowel cancer. People have used stories to teach each other for centuries, yet medicine seems to have forgotten this.

Despite the fact that cancer is a leading cause of death in Australia accounting for thirty per cent of people who die, you say there were few units in your first medical degree dedicated to cancer. Why is this? And why should more units of study relating to cancer be included in a doctor’s early study/training?

The medical curriculum is overflowing because medical knowledge continues to increase at a rapid rate. Topics compete for attention in this busy space, and one of the casualties is cancer. We’ve known for decades that the cancer knowledge of freshly graduated doctors isn’t up to scratch. Cancer affects one in two people by the age of eighty-five – every doctor needs a broad understanding of cancer.

You’ve done a lot of soul searching and study to get to this point – and the next step is finishing your psychiatry study and training. Why psychiatry? Casting your critical “patient-doctor” eye over this specialty, what are its flaws, what needs to change, and how easily will you be able to campaign for this from the inside?

I chose psychiatry because it struck me as the branch of medicine that had best held on to the idea that the patient is a person, and the notion of the patient-doctor ‘relationship’. Psychiatrists also tend to think about systems and how people function (or not) in those systems. It isn’t perfect, and it is under the same pressures as the rest of medicine (not enough beds, waiting lists, doctor egos, funding, etc), but it feels like the space where I have the best shot at being the kind of doctor I think patients deserve. Changing things from the inside is hard – I have the same struggle as other junior doctors who work full time and study full time, move hospitals every few months and do shift work – but I am committed to making things better and that keeps me motivated.


The Patient Doctor by Dr Ben Bravery, Hachette Books, $32.99





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