Emancipating Patients

Melinda Seed

Just read a great article from the British Journal of General Practice (shout-out to @ipump1 for sharing it with me) and Charlotte Williamson for writing it-kudos. It’s about the emancipation of patients from the oppression of doctors and as the subheading of the article says, it’s “a theory whose time has come”.

Firstly, it acknowledges the high ideals and high levels of competency inherent in being a medical practitioner. The article does, however, draw attention to societal and professional factors that inhibit a just distribution of power.  Doctors’ training, beliefs and methods of operation serve to put patients in the position of being a weaker group subject to the (sometimes) unjust use of power by doctors as the dominant, stronger group.

“What doctors see as benign beliefs and actions, patients may see as putting them at an unjust disadvantage.”

The theory is certainly timely for me as I’ve pondered patient engagement, activism and autonomy even more than usual lately.  Williamson’s theory makes a lot of sense. She outlines three examples of the way in which what is generally accepted in medicine can actually enforce the will of the powerful (the doctors) upon the weaker group (the patients).  These are doctors’ sense of being different and special (C’mon you know that’s true), secrecy and resistance to change. I thought I could include all three issues in one blog but realise that would make it too long so I’m going to do one at a time.

Doctors’ Sense of Being Special

General Practitioner, Dr Clare Gerada posits that during their training doctors come to believe they are special and quite different from patients, this protects them psychologically from constant exposure to illness and death but feelings of difference morph quickly into feelings of superiority that in turn leads to oppressive behaviours.  Williamson says “In medicine feelings of superiority sometimes glimmer through in, for example, the way some doctors speak patronisingly to patients, disregard what they say, or assign patient-speakers at conferences the worst spots.” (Williamson,C.)

Conferences are an interesting example methinks. A couple of illustrations spring to mind. Recently I read Renza Scibilia’s experiences of presenting at medical conferences. Check the whole blog post out it’s a good read, but essentially a dietitian stood up and told her ‘in no uncertain terms’ that she was “irresponsible” for talking about a piece of research on diabulimia and more than one endocrinologist criticising her and saying she needed to be ‘reined in’ when she related her personal story of using an open source app to create a closed loop pump.

Contrast this very open and unchallenged criticism  with what happens when a patient has the temerity to criticise a presentation from a professional.* 

An endocrinologist (whose name I’m withholding because this blog is about the system, not him as an individual) chastised me for my blog post, He declared my blog ‘unhelpful’ and ‘inappropriate’-perhaps it was to him but he wasn’t the intended audience. He’s entitled to his opinion and to put it on social media but he wants to deny me the same courtesy. He also falsely claimed the post was a personal attack, that’s a bit more problematic:

Note the assumption that he has the right to make universal statements about helpfulness and appropriateness and the ‘othering’. I am implicitly excluded from the right to make comment because I am not a ‘peer’.  When I and others pointed out that it was a critique of practice and the claim that it was a personal attack was false given that neither the the presenter nor the hospital were named and there was nothing ‘personal’ about criticising research methodology and the publicly stated practices of a public hospital, he changed his tac to telling me I shouldn’t be ’emotive’.

This defensiveness, as though health service providers are beyond criticism and it is outrageously inappropriate to critique their publicly presented practices and research is hugely oppressive and that’s why it only every works one way. Professionals criticise patients openly and publicly  but when a patient criticises a professional, it is portrayed as a heinous attack by the holders of power. This handily silences patients’ concerns from ever being raised. Patients are criticised and attempts made to silence them for presenting matters of significance at conferences and when practices that are harmful to patients are presented as though they’re best practice (discharging patients from publicly funded care, for reasons that can’t be articulated for example) there are vigorous attempts by some professionals to silence any criticism.  I would put money on the fact that not one professional gave feedback to the public hospital that kicks people out, nor did one professional take to task those practitioners who criticised Renza’s presentations.  It’s not the criticism that gets me, it’s the double standard. 

This belief that doctors are special and superior to mere patients is also one of the main reasons why patient engagement at a system level always leaves patients burnout and frustrated-there just doesn’t seem to be widespread acceptance that patients have a valid right to participate in health systems. It’s also why many professionals feel totally fine with discounting and relentlessly denigrating patients being involved in health policy issues. We are biased, whereas they are apparently bastions of impartial wisdom.

 

All of this conspires to keep patients in their place, subject to the decisions and power of the professionals. Life is surely much easier when you can do as you like without having to worry about what other (lesser) stakeholders might be concerned about.

I’ll consider the use of secrecy and resistance to change in future blogs, these too contribute to maintenance of existing power structures within health. I hope that together we can think about ways in which we can emancipate ourselves from these constraints and ways of thinking which, as Williamson says hinder ‘medicine from being as humane as doctors’ talents and good motives should ensure.’

 

*Yes, my criticism of a presentation at a conference last year was scathing but not particularly more so than standing up at a session and calling the presenter ‘irresponsible’ nor telling a person’s boss that she needs reining in, despite the fact there was a very clear disclaimer that presenter was speaking of their personal experience and not on behalf of the organisation for which they work/ed. I note that nobody has actually attempted to defend the validity of the research or the practices that I criticised (they don’t have to, but if I’m to be castigated for criticism it should be about invalid or unsubstantiated criticism, not tone)  butI believe the hospital continues on its merry way with kicking patients out.

You will find the article to which I refer here:

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

 

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