Neurologist and natty dresser Dr Rick Bedlack, from Duke ALS Clinic in North Carolina USA, took on a challenging topic of patient decision making at this afternoon’s session of the 23rd In ternational Symposium on ALS/MND from the perspective of different decision making models.
In quite a philosophical talk, he framed the discussion of the different models of doctor – patient relationships from a discussion that he’d had with one of his patients. An educated patient accepted Dr Bedlack’s offer of riluzole and management of their care through a multidisciplinary team care approach, but declined to participate in a research study. The patient explained that they were going to pursue an unproven treatment that they’d heard about. Dr Bedlack commented that “their decisions bothered me and I started to think about why they bothered me”.
Starting with their refusal to participate in clinical trials, from one perspective, slower enrolment means studies take longer, cost more and may not be ‘generalisable’ when they are completed. Dr Bedlack’s patient isn’t alone, there are many patients who don’t take the opportunities offered to take part in clinic trials – in MND and other conditions too. Another factor that bothered him was that the patient felt that they had “nothing to lose” by trying an unproven treatment – a sentiment discussed in Sense About Science’s information leaflet by the same name. An example was given from outside the field of MND, published in the free-to-access online journal PLoS Medicine in 2009, where a patient DID lose out by trying an unproven medical treatment (PLoS Medicine, 6(2) Feb 12).
“So what could I have done or said to the patient?” said Dr Bedlack. Perhaps I could have taken a ‘paternalistic’ attitude and told the patient that this is what they should do – in the words of the South Park character Eric Cartman “You will respect my authority” he suggested. Dr Bedlack also discussed another model of doctor patient relationships – the model of autonomy (again, from South Park “Whatever. Ah do what ah want”). This type of relationship has been made possible by the huge potential for social networking and interactions on the internet, quoting the PatientsLikeMe community as an example of patient autonomy. Each have their pros and cons, so Dr Bedlack would prefer somewhere in the middle – a shared decision making model. An example of shared decision making model is ALS Untangled.
The final aspect of Dr Bedlack’s talk was if shared decision making looks like a good way to develop a dialogue between patients and their doctors, what do each respective group think about it? In separate surveys it was reassuring to hear that both doctors and patients both favour a shared decision making approach.
His final comment was a quote, originally written to describe marriage, but equally appropriate to describe the relationship between a doctor and their patient “The goal is not to think alike but to think together”.
Throughout his talk, Dr Bedlack cited a number of papers, including: