Mind Your Language #3

The ways in which the word "empowerment" is used is of continual interest to me. These were my thoughts in connection with people with diabetes and their relationships with Health Care Professionals.

First Published in Update circa 2004.

Is ‘patient empowerment’ really ours to give, asks Andy Usher

“Can I have grapes?”

“Well there’s a bit more to a diet than that.  You won’t need to ban certain foods you will have choices within the principles of healthy eating.”

“So I can have grapes?”

“Within reason, if you have too many at a time it might put up your blood glucose…”

“No grapes then.”

“Forget the grapes for a moment.  What you’ll need is to take on board the information that will enhance your personal control over the day-to-day management of your diabetes in a way that enables you to experience the best possible quality of life.  Do you see?”

“OK. What about bananas?”

Perhaps it would be more fruitful (excuse the pun) to hand the patient a diet sheet. One list of ‘good’ foods and a longer list of ‘no-no’s’.  But once you’ve handed it to them you’ve made up your mind for them – no awkward choices to manage and no grey areas – do this and you will be okay; don’t and you won’t.

Quite a lot of power to manage isn’t it?  Or is it? Given the number of patients who do not ‘comply’ with the sensible recommendations they’ve been given, let alone the treatments, what power do we actually have as health care professionals?  Patients nod and do what they want anyway. They are wilful. Perhaps we are getting closer to the point – patients are wilful because they have their own will and they exercise their will even when we know better and their choices are wrong. Would we do any better? Healthy living is recommended for everyone, so ask yourself if your daily routine is identical to the one you propose to your patients.

This is where my concern with the term “Empowerment” comes from. Originally the term was a legal one – to give legal authority to someone who did not have it. It means that when we talk about empowering the patient it presupposes that when they come to us they entirely powerless. The concept is based on an assumption that the patient is lacking at the outset, lacking resources, capacity, knowledge or any other tool of value until we deign, from our expert position, to empower them.

It is tempting to believe we have the answers our patients dearly wish we could give them, especially when vulnerable. But it’s a belief that potentially disarms, disempowers and disenfranchises the patient from their own resources – the capacity to learn about their condition and make decisions for themselves, whether we agree with them or not.

The challenge is not to empower patients but to develop consultation styles, language, health settings and environments and restrain our own impatientce and frustration in ways that do not so readily disempower patients of their resourcefulness.

Mind Your Language #2

Mind Your Language #2

This column article was one of the first to appear in Update magazine (around Spring 2004) and formed part of my earliest experiences of listening to people with diabetes relate to their condition.

More broadly, we all face issues of control in our lives and our beliefs about the extent to which we have choice or are determined by our limits and circumstances have a powerful influence on how we engage with the world and events.

Who’s in Control?

What does “Control” mean for patients with diabetes? It is a common word in diabetes care: “Blood Glucose Control”, “Controlled by Diet”, “I don’t have good control of my diabetes?”  Specifically such terms mean the method of regulating blood glucose, but frequently patients only see the implied meaning.  On the Careline callers often say that they are being controlled - by their condition, their anxiety about blood glucose, food, injections - and when they do, invariably it is because they perceive their own control to have failed. 

People with diabetes feel as much as know, that diabetes is serious, and surely this means they must be very careful and constantly vigilant. They may perceive the consequences of failing to achieve total control are very serious.  Control implies vigilance, constancy and pinpoint accuracy, like balancing on a tightrope.  It doesn’t ask “can you cope?” or “what might you do to cope better?”

Concrete concepts of control can lead the patient into some very rigid and narrow beliefs and behaviours. Monitoring blood obsessively, panicking at readings deviating from 6mmols/l (often confusing finger-prick and HbA1c targets), eating the blandest food believing it is medicine or knowing they can never walk the razor’s edge and denying their condition, are all common control problems.  In many ways this should not be surprising if we consider how patients are likely to have experienced this word before – a “control freak” is someone who micromanages every aspect of their (and other peoples) lives, “out of control” is a phrase we use to denote complete chaos, a “controller” is someone with absolute authority and a “controlling vote” has the power of veto over all others. Control is a polarizing concept in that anything that is only controlled to a degree is insufficient.

It is also significant that patients who perceive their locus of control to be internal adapt to their diagnosis, and cope, better. They also tend to worry less about aspects of their condition that are out of their control and are more responsive to new challenges. In other words they are more realistic, flexible and less polarized and rigid. In contrast an external locus of control is felt by patients as fatalistic but in addition continue to focus on evidence that they have no power to effect change. They often feel that doing their best will never be good enough.

The desire then, is patients who are responsive managers rather than attempting to be controllers, and management has a greater sense of ongoing flexibility and responsiveness and less of the “all or nothing” connotations of control. The question is, are we prepared to give up control to the patient manager?

Further Reading

de Ridder D. Geenen R. Kuijer R. van Middendorp H. Psychological adjustment to chronic disease. [Review] [142 refs] [Journal Article. Review] Lancet. 372(9634):246-55, 2008 Jul 19.

Frostholm L. Oernboel E. Christensen KS. Toft T. Olesen F. Weinman J. Fink P. Do illness perceptions predict health outcomes in primary care patients? A 2-year follow-up study. [Journal Article. Research Support, Non-U.S. Gov't] Journal of Psychosomatic Research. 62(2):129-38, 2007 Feb.

Samson A. Siam H. Adapting to major chronic illness: a proposal for a comprehensive task-model approach. [Journal Article] Patient Education & Counseling. 70(3):426-9, 2008 Mar.

Mind Your Language #1

Mind Your Language is the title of a column I wrote for Diabetes Update between 2004 and 2009. Future postings will include the written material from those columns plus a current commentary. Although written for Health Care Professionals the column was written to be short (500 words or less), light and easy-going on the reader who should not require specialist or technical knowledge to engage with them. All the topics covered continue to interest me and I would be very pleased to receive comments and enter discussion.

To begin with I give an overview in the following introduction.

Introduction

I was first recruited to Diabetes UK Careline in 2000 as the organisation became increasingly aware that “psychological” understanding was central to the needs of people with diabetes seeking the medical information offered. Individuals with training and experience in counselling and psychotherapy as their main skill set, like myself, were taken on and then up-skilled in central areas of diabetes information and knowledge.

Taking on detailed medical and scientific information as well as social implications was an arduous process and initially difficult to integrate into a psychologically minded yet down to earth way of engaging with people.

As I began to speak to people with diabetes common themes seemed to emerge that resonated with my psychological inclinations and sometimes seemed at odds with the information from a purely medical or scientific basis. I became convinced that it was not the information or the medical knowledge that was faulty, neither was it the lived experience of people attempting to cope with the condition. It was the language that seemed to generate dissonance between patient and clinician – they were singing from different hymn sheets, as it were.

“Mind Your Language” was I column I wrote for Diabetes UK’s Professional Members magazine Update as a way of encouraging discussion and reflection on Health Care Professionals use of language associated with diabetes. I first broached the idea for topics in 2003 and continued writing the column until the end of 2009.

I was reminded again of the subject of language and diabetes in September 2011 when Diabetes Australia produced a position statement encouraging greater mindfulness of language use (for more information see http://www.diabetesaustralia.com.au/en/Media-Centre/Media-Releases/Diabetes-Australia-Language-Position-Statement/)

I was particularly impressed with the importance Diabetes Australia placed on this and noted with interest that was co-written by Professor Jane Speight who worked with Diabetes UK Careline conducting qualitative research on Health Care Professional training course on communication skills with patients. I also remember a conversation with Dr Speight waiting for a London bound train returning from Diabetes UK Annual Professional Conference 2010 held in Liverpool, that we had both attended. I have always found such chance possibilities for networking fascinating and rewarding although I am also conscious of monitoring peoples’ tolerance for listening to my interests.

I’m also wary of the balance between being too self-effacing and “blowing my own trumpet”, but on this occasion felt entitled to talk about “Mind Your Language”. I was aware Dr Speight would be in receipt of Update but also knew my little column occupied the back page behind an insert, tucked away so to speak.

So I feel quite pleased to have contributed in some small way to what is now an international awareness of the meaning that people may attribute to a certain way of speaking and hearing about diabetes.

Psychomagician

Many years ago I was listening to a senior lecturer of Psychology in class. He was a wonderful and charming man and his subject was psychometric testing. Even back then I was pretty sensitive to the notion that a few questions and some tests could "nail" who you are or reveal some essential truth about your personality or intelligence - a priciple that is very common in the back pages of popular magazines. Anyway, psychometrics had me glazing over and listening to my lecturer's pleasing Italian accent as the content slipped lazily through my mind making no new neural links in my prefrontal lobe, when I heard him say... "You willa learna to be-a Psychomagician!"

"Yes!" cried out my vanity and hubris, "that's the job for me! A Psychomagician!" Of course, in his accented manner the lecturer was actually offering to teach us to be psycho-metric-ians, learning how to tease essential components from the human-as-machine-widget instead of white rabbits from the top hat of the psyche. I soon drifted off again.

Many years later, retraining in counselling and psychotherapy I found there were occasions with clients when white rabbits were pulled from hats... astonishing and surprising transformations. But no amount of pulling on my part made the difference. Instead, creating a space in which clients might just find their own resources and choices and ways of relating... and this, only if I could be real, honest and engaged rather than clever and masterful and technically adroit. More frequently people shifted quietly and gradually, moving closer to the weft of their own living by small degrees. Desiring to become a psychomagician was a tempting fantasy to escape or deny the ordinariness of humanity... but without it's mystique I sometimes get to see the extraordinariness of ordinary humanity... all lit up.