|Why this picture? ...Read on...|
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."
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
- 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
- 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
- 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.