Williamson, C. The Emancipation of Patients: a theory whose time has come. British Journal of General Practice, March 2019. p150
When doctors resist changes to policies or practices that would support patients’ autonomy or voice, they act oppressively. Explanations from patient activists and doctors’ own understanding can lift that oppression, but often only after patients have suffered unnecessarily.
A British Medical Journal article proposes that doctors often act in a ways that oppress patients, and improving things for patients should be understood as emancipation. When I think about this in relation to living with diabetes, I’m like ‘hell yes” why didn’t I see this before? I think we have understood nd we have been quietly fighting for emancipation for a long time, the internet has sped up the underground railway and now the time has come, as the article says for this concept to take hold.
One of the ways in which doctors hold onto the power to oppress is, the article claims by resistance to change. Williamson highlights the issue of unrestricted parental visiting in all children’s wards in the UK. This change in policy took 30 years to implement despite consistent advocacy from parents, evidence from research and the direct evidence of distress witnessed by professionals every time small children were separated from their parents.
This is not dissimilar to the current state of diabetes inpatient care. There is good evidence that inpatient care of diabetics, particularly those with type 1, around the developed world is very poor. Insulin errors in dose and timing, high rates of dka developing in hospital are attested to by people with diabetes, research (see the UK National inpatient with diabetes audit) and by diabetologists. Why is it that patients who manage their own diabetes 24/7, 365 days a year must be routinely denied access to the tools they need to manage their care whilst fully compus mentus in hospital. Sometimes people are too sick or under the influence of anaesthesia or pain relief to manage their own diabetes but that is usually only the case for short periods of time during a hospital stay.
I posit that this interference with self-management, the lack of generally accepted guidelines and recommendations for self-management is all about power.
Individual professionals are probably not sitting in their offices maniacally laughing about having their inexperienced (diabetically speaking) hands around the lives of diabetics but the systemic resistance to diabetes self-management in hospitals sure seems oppressive and something I’d certainly like to be emancipated from. We need to start asking why self-management isn’t the norm in hospitals and we need to agitate for change. It shouldn’t be up to every individual with diabetes to fight for their care when they’re in hospital. Where are our advocacy organisations? Probably too fearful of pushback and been infiltrated by doctors who act within these organisations to resist change that redistributes power.
It’s always been a battle for us to access the tools and equipment we need. Take home blood glucose monitoring as an example. Doctors were opposed to people testing their own blood sugar levels, patients couldn’t buy meters-even if they were prepared to shell out for the hospital priced ones until patients started taking things into their own hands. In my case, my first meter was built by the dad of another type 1 kid in his garage (he supplied affordable meters for kids at the Children’s Hospital in Sydney).
I suspect that the resistance to the #wearenotwaiting movement in diabetes, that is DIY closed loop pumps is similar. This movement is very threatening to doctors who generally don’t understand the technology and see a dimunition in their input. There are some great doctors who are onboard and encourage patients because of the good results they’re seeing.
It is a strange thing that being engaged with our care results in such resistance.