Why Doctors Oppose Self-management

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.

Williamson, C. The Emancipation of Patients: a theory whose time has come. British Journal of General Practice, March 2019. p150

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.

4 thoughts on “Why Doctors Oppose Self-management

  1. It’s an interesting one on the DIY Closed loop front. Based on the feedback we’ve had from users in the U.K., most clinicians have been reported to be reacting positively.

    Having said that, those who represent them and reflect their professional bodies have been somewhat less forthcoming in voicing support.

    But if we sit down with most of these professionals and talk, what they want is to have more people managing stuff themselves, so that it frees them up to deal with those who really need help.

    I get the impression that inpatient care of diabetes and the regular day to day interaction differ dramatically and they most certainly shouldn’t.

    1. That’s encouraging re looping Tim. I think things are improving here too-it’s just that it’s a slow process and the patients have to do a lot of convincing before things are accepted.

      Inpatient care was described by a leading endo at a medical conference as being “left to the lowest common denominator”-his view was endocrinology isn’t resourced to deal with all the people in hospital who have diabetes so it gets left to interns and residents who have little knowledge of diabetes. I find it frustrating that it is so well known and yet nobody does anything about it, loads of talk, little action. There is huge potential for patient advocacy groups and professional groups to lobby together for more resourcing of specialist D staff in hospital and for support for self-management. Win-win in my opinion.

  2. I’d rather use a system approved by the FDA and Health Canada in hospital or out. I’d also say that here in Kingston, Ontario, our local hospital does allow the use of patient run pumps

    1. Some hospitals here “allow” it as well, but the concept of ‘allowing’ patients to continue using the tools of their choice to manage their diabetes is part of the problem. We don’t have an approved system here in Australia.

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