Victorian GP Dr Mariam Tokhi has recently launched the Australian Centre for Narrative Medicine, in an effort to let doctors be creative again.
If you’ve heard the term ‘narrative medicine’ floating around Australia’s medisphere over the last few years, chances are that you’re aware of Melbourne-based GP and writer Dr Mariam Tokhi.
Until recently she was a doctor with Utopia Refugee Health, working with a population who spoke English as a second or third language and who were largely excluded from Medicare.
Right now, she’s reduced her clinical load while she finishes her first novel – the manuscript of which was recently shortlisted for publishing company Hachette’s unpublished authors prize.
Alongside senior paediatric emergency physician Dr Fiona Reilly, Dr Tokhi has recently launched the Australian Centre for Narrative Medicine, which will run narrative medicine workshops and education for health workers.
She sat down for a chat with The Medical Republic.
TMR: I keep seeing discussions online about narrative medicine, but I was hoping you could take a step back and tell me what it is and how you got involved in it.
Dr Tokhi: When I was when I was newly fellowed, I started working in community health in in a fairly poor and quite socially disadvantaged community.
What I found was that I actually had a pretty good grasp of the clinical medicine, but what people were bringing me was not just bodies and pathophysiology.
[Instead, it was] stories about their lives that connected to the way that their bodies and their brains were working and connected to how they would access healthcare and how they trusted people.
And what I felt I was really under-trained to do was to work out how to care for people and provide health care in this context.
I’d actually gone and studied a Masters of Public Health at Johns Hopkins before this, and that was really useful because it helped me think about the social determinants of health in a epidemiological and biostatistical way, and I felt like I had a good grasp on that.
But actually, what people were asking me to do was the story, and it was actually quite overwhelming.
I felt quite isolated and a little bit like I was drowning in these complicated, messy – but also really interesting – stories of people’s lives.
I wanted to be able to help tell those stories and explain how they affected people’s care and their health, but I also wanted to learn how to do advocacy for these people who weren’t getting good healthcare.
The other thing I wanted was to help make sense of them for myself.
Narrative medicine is this field where, basically, we teach and learn the art of listening.
Not necessarily just listening to patients [in person], but through poetry and art and reading and being present for different forms of literature and craft, and then also storytelling.
Part of what we do in consultations is we tell stories; we try and engage people through storytelling.
Whether that’s at the individual level with a patient, or whether we’re telling stories to help shape people’s trust in health systems or advocate, storytelling is a massive part of what we do.
As clinicians, we’re often not trained to do that part of it. So that’s what I teach.
At the University of Melbourne, I’ve started the Australia’s first narrative medicine program, where we take these skills – and they’re not esoteric skills in anthropology or social sciences – they’re actually really anchored in clinical practice and meaning-making for clinicians and patients.
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TMR: From an outsider’s perspective, medicine can seem like it’s all about finding the right dosage or the right drug, but sometimes it is just as much about actively listening.
Dr Tokhi: I think the thing is, there are all these guidelines and for the perfect patient, you can apply the guidelines.
But there is no perfect patient.
The art of medicine is being able to look at the average from the studies and work out how it applies to the person in front of me.
And how do you make sense of needing this person to have this particular glycaemic control for their diabetes, but they don’t have a refrigerator at home to store insulin.
What do I do with that story, and how do I show up for this person?
When I was a young GP, I felt really angry and sad. I did a lot of advocacy around how we practice medicine in a system which prioritises six-minute medicine and prioritises quick medicine.
How do we do this work with complex patients, which is where a lot of health savings are from a purely economic perspective?
How do we engage people who have a lot of medical and social complexity?
You do need to go up and listen to their stories and understand – why aren’t they taking the insulin?
I can prescribe the right dose of insulin, but why isn’t somebody injecting themselves, or why aren’t they turning up to appointments?
How do we hold space for those stories and those people?
When I brought that perspective and curiosity to my work, it actually one became a lot more interesting.
It wasn’t just a story of, ‘I’m frustrated with the person in front of me who is not doing what I tell them to do’.
It improved my wellbeing as a clinician, and it improved my relationship with patients.
I found patients were more willing to come on board and they felt like they were being seen and heard.
We were able to play the long game.
[Things like] ‘how do we support your housing as the most important thing that needs to happen’.
But I also want to say that it’s hard to do that sort of work.
You need systems that support it.
You need people around you that support it.
I’m asking people to swim against the tide a little bit.
But having said that, it is much more fun, it’s more interesting and it’s a really lovely way to live life.
We can practice medicine and have that sense of satisfaction that we’re not just dealing with numbers – we’re dealing with people in their beautiful, messy, wonderful complexity.
TMR: You mentioned that you’re teaching the first Australian narrative medicine course. Where else has it been embedded as a part of learning?
Dr Tokhi: I went to Columbia University in New York, and they run a masters program and a certificate program in narrative medicine.
I studied solely by distance while I had small children and was working clinically, and I did the certificate program.
I would love to see a university take this on board for Australian health workers and undergraduates as well. The University of Toronto runs an online program, and there are [narrative medicine] programs in Singapore and in Iran and in Greece.
We run a program for the medical students at the University of Melbourne, and they love it.
Dr Fiona Reilly [and I also] run short workshops in narrative medicine for organisations, and we often get asked ‘how do I study this further? How do I how do I develop my skills in this space?’.
It has spread across the world, it’s time for it to come to Australia. I think it would be amazing to have [a certificate in narrative medicine] in the Australia-Pacific, but we’re working on it.
I think for a lot of people, they’ll look at this and think ‘I already practice in this way’, and it’s true.
I really like though, that narrative medicine offers a framework and a language to support an evidence base.
TMR: I think that’s really important to point out – without an evidence base, you can’t get things like funding.
A lot of GPs are torn between wanting to practice medicine in this very much non-six-minute way, but the reality is that the Medicare system just doesn’t support that.
Dr Tokhi: If we can invest in long consults, particularly early on in our relationship with patients, it often pays huge dividends in the long run.
Once you’ve got a handle on who someone is and what their medical and social priorities are, it makes things quicker in future consults.
It improves engagement, it reduces hospitalisations and it stops fragmentation from happening.
I’m sure many of us have seen that with our patients – I do think it is beyond time to think about how we support continuity of care and how we support GPs to do that initial groundwork with our patients and to support those longer consults.
How do we support patients who don’t turn up to their appointments, because we know that people with really chaotic lives often have multiple appointments for themselves or for their kids or for their family members.
The way that the private model works is that we can’t afford to tolerate failure to attend.
How do we think of this at the individual level of nurturing skills in ourselves to hold space for people telling us difficult stories of abuse or violence or homelessness?
But then also, how do we change the systems to support that sort of work?
I think both of those things are really important.
TMR: You’ve just launched the Australian Centre for Narrative Medicine with Dr Reilly, tell me about that.
Dr Tokhi: We will be running narrative medicine workshops and education for health workers, and we find that often people come out of those workshops really transformed.
It’s an opportunity for meaning making and finding the beauty in the work that we do, and to grapple with the really difficult things that we do – but also to celebrate them.
It’s often the first time any of us have looked at poetry or looked at art since high school.
I have realised that so many doctors and health workers are just fundamentally really intelligent, thoughtful, caring and creative people, but we have often been pushed into a way of existing as professionals that squashes that.
Doctors interested in narrative medicine can contact Dr Tokhi via her website.
This interview was edited for length and clarity.