I spend some of my time working in a hospice for children and young people, and much of that time I know I am looking after patients who, themselves or their parents, know more about their condition than I do. Dealing with this – when I’m asked to review someone who has something I know I should have actually learned about at Part II and didn’t – was initially quite unnerving.
So when this paper floated into Twitter some time ago I got to thinking about how it might feel to be on the other side – to be the one knowing more despite being the non-professional – in this case, adult patients with type 1 diabetes. There were a range of responses; from the junior doctor impressed by the patient’s knowledge and taking notes, to the pharmacists refuting the prescriptions brought to assist the expert patient.
Allowing the expertise of patients to continue to guide their own disease therapy, even when inside hospitals, may be a culturally difficult thing to do. It will mean that we have to actually believe in shared decision making, actually empowering patients to make their own decisions, including ones against our opinions, and allow them to control their medications not just give what we say they should. Some of us may be doing this now. Others may feel equivocal. Others may be fearful that this will lead to worsening outcomes and increasing mortality rates.
Where would you stand on this?
– Bob Phillips