Saturday, June 1, 2013

Do we need a Romantic movement in medicine? Involving patients in medical education

Why this picture? ...Read on...
I have had a very interesting conversation with Anya de Longh on Twitter and commenting over on the AMS Doctor blog. She wanted to know how patients can be more involved in medical education. There have also been helpful contributions to this discussion from David Chessor, Meerat Kaur and Clare Morris. And then Anya asked "What are the biggest obstacles for clinicians in accepting teaching from patients?"

I don't have an easy answer to this, and would love to hear other people's thoughts. I also don't think it's something I can do justice to in 140 characters, as I think the answers to this questions are tied up in what we call the Hidden Curriculum - those unstated values which get acted out by doctors and medical students.

Why is something so obvious so difficult?

It does seem obvious to me that patients (and for that matter carers) should be involved in teaching doctors (and, for that matter, all health care professionals). I don't think there are that many people who would argue against the idea. So why is it so difficult to do? I think there are some particular ways we have of thinking about medicine that lead us to discounting the patients' views. I'll suggest what I think these are here. I don't want to suggest that these ways of thinking are wrong - they have been beneficial in many ways - but there are other ways we need to think, too.

Medicine is thought of as a technical discipline

The way we conventionally teach and talk about medicine makes it look like it's a technical and scientific discipline.The study of medicine becomes the study of scientific facts about diseases. This exhibits itself in traditional physiology and pathology, as well as the monitoring requirements of diseases, such as diabetes. Eventually, all that you need to know about a disease is the numbers assocated with its monitoirng - so you assume that you know all about someone's diabetes if you know their HbA1c, their fingersprick sugars, their cholesterol and their blood pressure. The way we teach using cases which concentrate on disembodied signs and symptoms of disease, and the way we encourage "taking a history" as the extraction of facts related to a diagnosis, with any other information deemed (by the doctor) to be irrelevant - ideed, patients who concetrate too much on these "irrelevant" facts may even be deemed to be poor historians. In our teaching, we pose clinical problems that always have an answer (and usually only one answer). We seek an objectivity that means anyone can mark the assessments. We develop and use symptom scoring systems to reliably diagnose or calculate risk for a huge number of conditions now, and we can even use the fact that people use more emotion-laden terms for their breathlessness to diagnose their chronic lung disease.

Evidence based medicine, in its success at giving us confidence about which treatments and tests work, has resulted in an inadvertent limitation in the sort of questions it is legitimate to ask in medicine. We are encouraged to ask "In a man aged 65 do the benefits of aspirin outweight the risks for primary prevention of cardiovascular disease?" It's not even assumed that we might ask the man himself of course - it is posed as purely an informational question. There are other types of legitimate questions that patients ask which the evidence has no answer for.
  • "Should I see my sister with lung cancer on the Central Coast next week?"
  • "Why do I feel so guilty about allowing my mother to go into a nursing home?"
  • "How can I make her love me again?"
  • "Who can I talk to? I feel so lonely."
In seeking out objectivity, we have crowded out the need for the voice of the patient without even realising it. If all you need to know about a disease is its pathology and biochemical markers, there's no need for a patient voice. Yes, we teach patient centred medicine, but if they know what's good for them, they'll fall into line with our objective evidence. Ultimately, when medicine is scientific, technical, "objective" then it is owned by us doctors, and patients don't really need to be involved.


I have deliberately painted an overly bleak picture. In reality, there are many doctors (including most GPs?) who practice and teach medicine entirely inclusive of the patient's voice. Helman, a GP and anthropologist, wrote in a classic 1981 paper about the questions that patients want answered when they see a doctor:

1. What has happened?
2. Why has it happened?
3. Why to me?
4. Why now?
5. What would happen if nothing was done about it?
6. What should I do about it.or whom should I consult for further help?

It's apparent that only question 5 (and perhaps 1) is readily answerable by evidence based medicine.Medical schools are using the humanities - usually novels and film - to teach about the experience of being ill. However, it's notable that these approaches can still both be taught entirely sepearately from actual real patients - again, we have the capacity to go to research libraries to learn.

I have come to this in realising that our traditional objective approach doesn't work in Aboriginal and Torres Strait Islander Health. Where doctors (and other health professionals) need to be assessed or taught on cultural competence, Aboriginal people need to be involved in this. In asking Aboriginal people what they want from their doctors, they do want them to know the clinical science, but they also want them to have an appreciation of their lived experience. And reading about it is OK, but just doesn't come close to actually working in a community.

But this is what my patients wanted in Sheffield in the UK, too. Being a doctor is not just an example of applying evidence to a blank canvas. The way we teach and disciss medicine can make it seem as if it is, though. We need to find a way of appreciating the subjective, and combining our learning of scientific skills with hearing of the experience and priorities of those living with the conditions we discuss.

I was reminded of Richard Holmes' book The Age of Wonder, about the influence of the Romantic movement on science through the 1800s. (And also Craig Shuftan's book Hey Nietzsche Leave those Kids Alone - possibly the best book title ever!) Romanticism is about the power of the subjective experience. I wonder (in both senses!) if we need to recapture a Romantic movement in medicine - alongside our objective disembodied knowledge, we need a sense of the subjective experience of illness.

There are examples of patients being involved at all levels of medical student education. It does take individual and institutional goodwill, though. Here are my thoughts on how we could do it right now.

If you are a patient
  • Take every opportunity you feel able to, to politely teach the doctors, nurses and students what you feel they should know
  • Give them and the service feedback
  • Ask around and find teachers enthusiastic to include you at the clinic, in the hospital and at the university 
If you are a student
  • Take every opportunity you can to learn from your patients
  • Ask them what they think you need to know
  • Tell your teachers how much you appreciated learning from the patients
If you are a doctor (or other health professional) involved in teaching
  • Take every opportunity to involve your patients in teaching your students
  • Ask what they'd like your students to know
  • If they want, help get them involved further with other organisations
If you are responsible for medical curricula
  • Think about how you could get patients involved in development, delivery and assessment of learners
  • Find out which individuals and groups are interested in getting involved
  • Think about how the hidden curriculum at your institution sidelines patient voices.
You will have other, better ideas. Or you might completely disagree. I'd be interested to hear your comments below. It's my feeling that only by involving patients in medical education, do we help students really understand what is meant by patient centred, patient empowerment and partnership. And we bring a little wonder and Romance back into medicine.

Saturday, February 16, 2013

GPs, Obesity and the Law – an amateur speaks

Recently the medical press, and the mainstream press have reported a case where a man won $365,000 damages from his GP for failing to do enough about his obesity. Like many GPs, my first reaction is WTF... My second reaction is to assume that there must be more to the case than just what is reported, and the case is going to appeal. So we don’t know all the details, but it does raise questions about responsibility and how well doctors influence behaviour. I think this brings us on to broader questions, too, about the role we ask doctors to perform in society and who is responsible for a healthy society.

Obesity is a risk factor for many health conditions, and as such, often ends up being managed in GP consultations. Sometimes it’s raised by the patient themselves, sometimes by the doctor. There is no miracle cure, it’s hard to lose weight. It takes a sustained change in diet and a sustained change in activity levels, both of which can be hard to do. Many people don’t want to try, many people try, and get frustrated by failure. This is only made worse by the images of success in tabloid “news stories” (read “marketing”) about celebrities and miracle diets. There is recent evidence that surgery can be helpful in weight loss, including preventing the complications of this. Even the surgery, though, doesn’t stop the requirement for long term lifestyle changes.

Read that paragraph back again, and note the language I used. Words like “risk factor,” “health conditions,” “managed in GP consultations,” “cure,” None of those words is wrong, but this is a very medical model and thinking like this will always ultimately mean the search for weight loss medications, and ultimately surgical solutions. It looks to me like the court has used a medical model like this – obesity is a medical condition, medical conditions are diagnosed and then have the (single) correct treatment given by the doctor to the patient and the patient gets better. See how passive the patient is in this scenario. And all the responsibility is on the doctor. That would seem to me to be how the court can come to a conclusion like this. However, real life is not quite this simple. As well as the medical language, see how I used moral language too: “...don’t want to try,” “failure.” To some extent the court judgement is about apportioning blame – a moral judgement – on one of the parties. Shall we choose the patient? Shall we choose the doctor? I don’t find this a particularly helpful way of thinking about this situation. This way lies arguments about compliance, and the set of discussions that assumes the people who come to see their doctors are frustrating nuisances. Reality is all just a bit more complicated than that.

At the core of what GPs do is behaviour change. We can get frustrated at how difficult it is to change people’s behaviour, but we will attempt to get people to stop smoking, reduce alcohol consumption, increase physicalactivity and eat more healthily. You can even view the prescribing of medication as behaviour change – for example from not taking aspirin daily, to taking it. One of the most widely used models to guide the way we do this is called motivational interviewing, which uses a stages of change model. In this model, people have change their thoughts about whether they want to make changes, and by understanding this GPs can adapt their discussions accordingly. 

Some people are described as being in a pre-contemplative stage, where they don’t recognise any need for change. Often doing anything more than raising the issue at this point just gets people annoyed. It’s when people are ready to make changes that you can dive in and make really practical suggestions. The trick is moving people around from being pre-contemplators to contemplators. It’s also crucial to note that failing to maintain change is a normal part of the cycle, and therefore not failure! This approach takes time, more specifically many conversations over numerous consultations. It also usually involves much more than just weight. It is unusual that there would not be other pressing issues too – physical health issues, mental health problems and social problems. And all of these interact – if you manage your anxiety by eating chocolate bars (and many do) then you need to talk about anxiety, stress and alternative ways of handling it and ways of changing that. It’s why GPs put such store on the relationship they have with their patients. These conversations have no hope without it. As it is, the evidence that we are effective at this is short on the ground (though I suspect that trials take a slightly reductionist approach – it’s unlikely that a trial would randomise to “Take as much time to cover all the issues which you and the patient believe might be relevant over several years” versus “usual care.” (Because that probably compares like with like!) I find it difficult to believe that a single referral would have made the difference in this case.
But this is a bigger issue than just what I as a doctor might be able to do with a patient over a period of time.  What we have managed to do is is create societies that make people sick. We develop our towns and cities with little green space, few cycle paths and pavements, and keep widening roads for all our cars to sit on unmoving. Physical activity becomes a product to be bought, either by joining a gym or by buying a Wii. We allow people to tell us that we are too busy to cook, so we should eat highly processed foods instead. If they’re unhealthy, then it’s a treat that you deserve, but if you can be told it’s healthy based on the presence or absence of single ingredients, then that’s even better. But you’ve got to eat processed. Because you’re busy. And you deserve it.
When we point out that the reason people become unwell is because of the environment they live in, then we get to do a bit more victim blaming – it was their fault; they had a choice. (Yes, but they were so busy! And couldn’t afford the gym)
So, by some strange combination, we end up with a situation where we are trying to claim that the person is unwell because they made a series of choices, and that the doctor is responsible for them staying unwell because they didn’t persuade the patient to make a different series of choices. Eh? (Another WTF!) 

Perhaps it’s useful to change the toxin. 

Imagine, if you will, a village where someone is poisoning the water supply. People are getting sick. You would want your village doctors to treat those who are getting sick. And you might want whoever is poisoning the water supply to stop. Instead they are telling us the water is very delicious. You deserve this water. And look how shiny the bottle is! Yes, you could go to the next village and collect water that isn’t poisonous. But you are so very BUSY. And look how cheap our water is. Lovely shiny bottles, see. You might ask why the village elders don’t stop the poisoners. Well the poisoners do donate much needed funds to the elders. And the system of self regulation, whereby the poisoners commit to reducing the amount of poison in the water to slightly less poison in 10 years time (never mind that they have missed similar targets in the past). And people do have a choice about which water they drink. And it does generate quite a lot of money (see how rich those poisoners are!) that generates tax revenue to fund those doctors you need to see because for some reason your personal choices mean you are all being poisoned! 

It seems obvious to me that a society that tells its doctors they are responsible for patching up (somewhat resource intensively and a little ineffectively) problems that are caused by the society we make people live in has got its priorities a little wrong. I’m left with a strange fantasy world where in the court of appeal damages are paid to both the doctor and patient by processed food manufacturers, town planners and the leaders who allowed them to poison our metaphorical water supply.