Words: handle with care

By | 29 January, 2013
Words, words, words,

Words, words, words,

Medicine is full of hazardous things. Dangerous drugs, sharp objects, nasty viruses. But when it comes to chronic diseases, sometimes words are one of the most potentially treacherous tools available to a healthcare team. This is my plea to all healthcare professionals…

Dealing with a pregnant diabetic is admittedly a bit like juggling with lit fireworks. There’s a real chance she’ll explode at any point for no rational reason other than being under a fair amount of pressure and too full of hormones. So this makes it even more important to think before you speak. Diabetes forums are full of pregnant diabetics who’ve just had something stupid/unhelpful/dispiriting/hurtful said to them at a consultation when the same subject could have been covered in a far more productive session simply by choosing some more appropriate words.

I generally cope with incidents like this with a combination of irritation and humour. But last week I had an encounter with a midwife that did upset me. And when I look back on it, it could have been so easily avoided by her simply engaging her brain before she opened her mouth:

The barb that punctured my not as tough as I thought pregnant diabetic skin was: I see you have a history of miscarriages, were they caused by your poor diabetes control? It was an innocently asked question from a community midwife who should have known better. For any other healthcare professionals reading this, can I ask that you think before you speak? She basically asked me did I cause my own miscarriages? Would you ask anyone else that? If you insist on jumping in with both feet without reading my notes (which clearly show I had good control) can I suggest asking open questions in future – what do they think caused your miscarriages? Rather than diving in headfirst with a set of ill informed, pre conceived ideas that really don’t help anyone?

On the less upsetting but still damn irritating side of things have been:

Oh, you have a small baby. What? Hold on. Stop the bus. What did we miss? She’s on the 45th percentile for growth, that’s pretty much bang on isn’t it? Oh yes, but it’s small for a baby of a diabetic. Ok, do you want to just stick to the facts and measure my baby against where it should be, rather than where you judge it should be compared to your prejudices about diabetic women?

Diabetics have big babies. Yes, some do. And some don’t. So shall we just focus on the facts in front of us about the size of my baby. Otherwise, we might as well analyse what size babies people called Alison have and compare ours to that too, it’s about as useful.

In a letter from the hospital to my GP: Her insulin requirements have increased and her basal rates have been adjusted. Ah, how handy to know that the diabetes pixie is changing my basal rates for me. I thought it was me spending the time analysing the data and adjusting accordingly but I must have dreamt that bit. Can I suggest a little nod towards the fact that this stuff doesn’t happen by magic – I’d recommend she has adjusted her basal rates accordingly. This also gives the added benefit of allowing other medics to determine whether the patient is making all their own adjustments or whether the DSN is doing it for them – far more informative that the diabetes pixie getting the credit for everything.

Your HbA1c is 5.3, that’s much better than the last one of 5.6. Really? Much better? They’re both well within target range and beyond that are meaningless without an understanding of how many hypos were needed to get to that level. Shall we avoid getting into competitive HbA1c territory? It really doesn’t help. Let’s deal with the facts rather than subjective opinions which change from Dr to Dr.

So when it comes to delivering xenical healthcare, could people just have a little think about the impact of what they say? It sounds like such a teeny, tiny thing, but when you’re on the receiving end of it week in week out it wears you down. And it devalues the message you’re trying to give.

12 thoughts on “Words: handle with care

  1. Anna

    I find it incredible that anyone could ask such a question, and from a ‘PROFESSIONAL’! (yes, I shouted that!). They must have learned their bedside manner the same place Primark customer service staff learn how to deliver customer service (avoid eye contact, continue talking about hating your job/customers and for the love of god try not to say ‘thank you’. Throw in the odd insult and you’ve got yourself a promotion).

    What kind of question is that, anyway??

    I don’t know much about baby percentiles, but 45th sounds just about perfect!

    Oh and well done on the 5.3, can’t believe how MUCH BETTER you are doing than last time. I mean 5.6; talk about ‘bad patch’!

    🙂

    Reply
    1. Alison Post author

      The thing is @annamac she was a perfectly nice woman – friendly, open, approachable, listened to what I had to say – yet she upset me more than any Dr with a Primark standard bedside manner has in years. What she was missing was an understanding of the patient perspective – she had no concept of the impact of what she was saying and the power of those words. And sometimes they’re the most dangerous ones 😉

      Reply
  2. brian

    The reason as I see it is that the Health Carer (professional purposely missed out – a grossly devalued word) sees before him/her a diabetic rather than a person with diabetes (pwd). It took me sometime to see the difference and I had to be told it – but that was 20+ years ago.

    The interest is the diabetes not the person.

    It needs to change and the pwd has a role to play – every time they get it wrong correct them, go prepared. I am convinced the Health Carer will get the message, like most people they want to do a good job; they just need FEEDBACK, preferably at the time, every time.

    The ‘diabetic pixie getting the credit’ is really a missed opportunity. Diabetes is the next epidemic, if you believe the fundraising claims. It is claimed that the NHS will be overwhelmed – to manage they need to identify the capabilities of the individual so that time is not wasted on pwds who can ‘fly’ their own body without the auto-pilot (ie pancreas). Letters to the GP or Hospital are a ready-made communication channel to provide that opinion and provide positive feedback, encouragement and acknowledgement to the pwd.

    If it was me I would issue a corrected (in red) letter to both the GP and the Hospital, with a request that they update MY medical records with the correction.

    Brian

    Reply
  3. Tim

    I’m appalled that anyone could casually bring up miscarriages in this way. As I know all too well, miscarriages are incredibly emotive, painful, horrible things and I can think of no circumstances in which they shouldn’t be discussed with as much compassion as possible.

    I rarely get annoyed by anything in the diabetes (or, indeed, non-diabetes world) but your experience was horrible.

    Reply
    1. Alison Post author

      I’m honoured to have triggered your rarely used annoyance 😉 And yes, it was horrible and completely unnecessary. She knows she did wrong. The reason for blogging about it is to try and get a few more medics thinking before they speak.

      Reply
  4. Anna

    In the last year 4 of my friends fell pregnant. Of them, 4 had miscarriages on their first time. None are diabetic.

    Yes, the likelihood of miscarriage in a person with diabetes is higher: a terrifying fact that is already hung over the heads of people with diabetes worldwide. But how would you possibly know if diabetes was the cause. Why even draw attention to it or ask such a careless question? You are currently very successfully managing a healthy pregnancy with a baby in perfect stages of development (juding by anyone’s yardstick).

    THAT is what needs to be drawn attention to.

    I don’t understand the logic of the question at this stage

    Reply
  5. Mike

    Urgh! Sorry to read this Alison, but well done for posting about it with such good humour.

    Seems quite systematic of a whole bunch of HCP dullards who default to ‘attack mode’. I’m only slightly surprised you didn’t get berated for the lofty heights of your 5.6 followed by a stern telling off for your 5.3 being too low. A year or two back a Registrar was beside themselves about my 6.3 because it was far too low and *must* mean I was having hypos virtually continually. “Ah, no actually… more effort and more test strips going in – number of hypos now considerably lower than when you lot used to get sniffy about those mid-high 7’s”. They remained unconvinced. Great encouragement for me to continue putting the pancreas impersonation hours in I don’t think!

    Reply
  6. Tracy Donoghue

    I can so relate to what you are saying. I even had a doctor in the ER insist that I couldn’t be type 1 – I must be type 2…so annoyed. I’m overweight so the natural assumption is that I am type 2 but I can assure you that I’m type 1.

    Alison, I feel for you. There is so much misconception about diabetes – I don’t know the answer, and I don’t think in my lifetime things are going to change anytime soon…I wish…

    Reply
    1. Alison Post author

      Hi @sossylicious , welcome to ShootUp! I think the onus is on us to change this, by calling out the behaviour to the person concerned every time we see it. Very little of it is done out of malice, the vast majority comes from ignorance or simple lack of thought – that was certainly the case in my experience. I don’t think the midwife in my case will ever make the same mistake again so that’s one down! As @brian says above it’s all about giving feedback, although I admit it’s not always easy.

      Reply
  7. Megs

    It makes me cross when the implication of a question is, as a diabetic, you are somehow set on self destruction. I accept such wording is not through malice however such insensitivity when dealing with highly emotive subjects is very hard to take.

    When asked by an eye surgeon ” Are you not concerned about losing the rest of your sight”? I responded with “Do you really need to ask that question”. It led to a rather frosty appointment but I hope it made him think and choose and arrange his words in a better order.

    Reply
  8. Caro

    Everyone else has already said it better than me. But I completely agree – totally inappropriate and unnecessary. The bottom line is, when. Miscarriage occurs, it’s almost always impossible to identify the reason. I blamed diabetes, but only because it was something to blame!

    The trouble with trying to put people right is that in that moment, emotions are running to high, especially for hormonal pregnant women. And correcting it later rarely seems to have the same impact. People with diabetes shouldn’t have to be so strong to keep dealing with this.

    And most of all, pigeon-holing needs to stop. All diabetics son’t have bad control. We don’t all have big babies. We don’t all need to be induced at 38 weeks because that’s the blanket policy. We don’t need to be treated as “people with diabetes” but as individuals. That would help a lot. And just maybe encourage the engagement of brain before the opening of mouth.

    Reply

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