Is It Stigma that’s Killing Us?

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

It’s not news to those with diabetes that hospitals are scary places that will quite likely do you more harm than good.

A UK audit of the treatment of inpatients with diabetes found:

Hospital inpatients with diabetes are developing potentially life-threatening complications at a “shocking” rate, 

The National Diabetes Inpatient Audit (NaDIA) found that, in a five-day period, more than 60 people with diabetes developed diabetic ketoacidosis (DKA), which results from a severe shortage of insulin. … Even a single case of DKA developing in hospital is unacceptable because it suggests that insulin has been withheld from that person for some time. The fact that this is regularly happening raises serious questions about the ability of hospitals to provide even the most basic level of diabetes care….

The report also found that the majority of hospitals in the survey made medication errors, with more than a third of inpatients experiencing a medication error during the period of the study.”  A good summary of the findings can be found here. UK National Diabetes Inpatient Audit

In case you think things are any better in Australia, think again. Sadly we don’t have anything as comprehensive as the UK’s NaDIA but a small study of one Melbourne Tertiary Hospital found

hospital-empty“Overall 52% (75/145) of diabetes inpatients had at least one error associated with either the prescription or management of oral hypoglycaemic medications and/or insulin during the admission.”

There doesn’t seem to be any reason not to assume that this error rate is repeated across many hospitals and given that the hospital in question is a teaching hospital and has access to diabetes specialist nurses, dietitians and endocrinologists, it is likely that smaller and regional hospitals would have worse rates of error.

So in Australia, you are more likely than not to suffer a medical error in the management of your diabetes in hospital. Scary!

So that’s some of the empirical evidence. When you start analysing people’s experiences with diabetes in hospital it gets even scarier. Withholding insulin despite established, documented type 1 diabetes and the presence of high sugars is commonplace.  Anecdotes shared on social media sll too frequently include teenagers with diabetic ketoacidosis being told they should be refused treatment if they come in for a second time, medical staff talking loudly of “another bad diabetic clogging up our ER”, not having hypo treatments available, hypos being ignored by staff and routine ignoring of out of range blood sugar levels.

Diabetes is a very common disease and the NaDia study indicated that during the study, 15% or 1 in 7 hospital beds were occupied by people with diabetes. So it’s not as though diabetes is so rare people haven’t come across it before or that it wouldn’t be covered in med/nursing school.

So what are the causes of such an alarming rate of medical error?  I am sure that there are a great many reasons and a combination of factors that give rise to medical errors and poor treatment but I am putting forward the hypothesis that stigma is at least partially to blame for the poor treatment of people with diabetes. 

This suggestion might raise some hackles but is it any more outrageous than the fact that people with diabetes in Australia are more likely to suffer a medical error than not and in the UK, it’s not much better with 40% of people with diabetes suffering an error and alarmingly, 7% of type 1 diabetes patients experienced DKA as a result of their hospital admission. Those are some startling statistics.  Further research is required to provide data on error rates amongst different conditions and to examine the attitudes of HCPs towards diabetes.

Is it possible that the perception of diabetes as a self-inflicted disease in which any problems, be they blood sugar-related or long-term complications are self-inflicted translates to a belief that people with diabetes are less worthy of medical care than more deserving patients?  Certainly, this sentiment has been overtly expressed to  people with diabetes by health professionals.

It makes sense to me that beliefs do get translated into actions even if it’s entirely subconsciously. I don’t believe HCPs make deliberate decisions to harm people with diabetes but isn’t it possible that those messages about non-compliance, avoiding diabetes by losing weight, poor control, the need to improve diet and “clogging up the ER” translate into diabetes being treated as a low priority rather than the life-threatening condition it is?

What do you think? Could stigma be killing us? What can be done to improve treatment of diabetes in hospital and/or stigma?

12 thoughts on “Is It Stigma that’s Killing Us?

  1. I’ve had a previous experience in an emergency department where the DR wanted to administer a random insulin that I had not taken before because it was available in the closest fridge! It took the nurse to interupt and suggest it wasn’t the best idea. She then apologised to me for interrupting the DR but I was full of praise! I think diabetes is seen as a basic medical condition which can be dangerous and is degrading. Good medicl treatment should be given what ever the circumstances and should be given with care and accuracy!

    1. It’s terrifying isn’t it Gemma-oh here’s some insulin, that’ll do. Kudos to the nurse for having the guts to stand up to a more senior colleague, never easy. Agree, the patient and their condition should be treated with respect regardless of the circumstances.

  2. Even stigma is a lack of appropriate training, both in medical procedures to do with diabetes and in how to give care in a nonjudgemental way. Most importantly, some medical staff need to learn how to listen to patients who’ve been managing their diabetes 24/7/365, without interfering medical staff withholding insulin or making really bad and rather clueless decisions.

    Always have a letter ready to say that as long as you are conscious, you’ll manage your own diabetes. If you are not, then your endo or CDE needs to step in. I’m seriously worried about what incompetent medical staff might do, given the well known situation you’re describing.

    1. Good advice Sooz! I see stigma as being quite deeply embedded in our society and medical system, so under pressure it may override what they’ve been taught about being non-judgemental and even diabetes 101. I can’t be sure, just theorising but would like to see some research on why diabetes seems so poorly treated-or are all conditions so badly mishandled? Thanks for your thoughts.

    2. Anecdotal evidence suggests we are really good at emergency medicine but hopeless at dealing with chronic conditions. The media makes non HCPs judgemental. Lack of knowledge makes HCPs judgemental. The sooner the blame game stops (HPSs to patients), the better. The absolute best people in health care are the ones who have T1 or T2 themselves or they have someone they love who does and they have to manage it. Pity that’s what it takes for some.

      @Jane – as a T1, I still thank you for recognising that T2 needs a genetic predisposition. The blame game and stigma for T2 is completely out of control, when T2 starts many years before diagnosis. All that extra endogenous insulin makes you ravenously hungry and promotes fat. Guess what results? People are mistaking easy association with true cause when they blame lifestyle as the only cause. There are morbidly obese who will never get diabetes. I wish certain people would recognise that! Thanks to the stigma, there’s a whole world of needless guilt out there.

  3. I believe that your hypothesis is correct, Mel. The great majority of the public (and often, HCPs) do not realise that ‘diabetes’ is not one size fits all, let alone that there are two major categories. There has been so much misinformation in the media about ‘diabetes’, often put out by organisations that are supposed to be supporting us, that it is no wonder that there is a stigma attached to the words ‘diabetes’ and ‘diabetic’. it is truly appalling that insulin is withheld from patients, thus putting lives at risk. I’ve had something similar happen in a private hospital after an operation. I was put on an insulin infusion, but was not given boluses for meals. When I protested, the HCPs could not see what the problem was, even though I was going high. It was only when a specialist physician was called in that I was given back my pump and the staff told that I was to manage my diabetes treatment myself. I fully understand why many T1s take all their D gear with them when they go to hospital. It is interesting to me that there does not appear to be a stigma in relation to lung cancer or bowel cancer where a person’s lifestyle choices may have been a contributing factor. But diabetes? Yes, there is definitely a stigma. Perhaps we really need to lobby for a new name for Type 1, although that leaves those Type 2s who have a genetic predisposition to the condition to bear the stigma. Not fair, either way.

    1. Thanks Jane-more horror stories. WHy can’t something be done to educate HCPs??? I do believe there is a stigma around lung cancer-a friend’s husband had it and he felt very stigmatised and treated like the “poor relation’ in cancer care. We should receive adequate care despite how people believe we developed a disease-the same stigma applies to type 1s with complications IMO-there’s a belief that you brought it about by not controlling your sugars-yeah like 4 or 5 decades of d, especially pre-home blood glucose monitoring and purified insulins isn’t going to take its toll.

  4. Mel, I mentioned lung cancer because my mother died of it, admittedly more than 20 years ago. She was a non-smoker, but got a fair amount of passive smoke from my sibling. Then there was no stigma attached to it. I guess it’s all changed now.

    1. Interesting Jane, sorry to hear about your Mum but glad to hear she didn’t suffer from stigma. It’s interesting that cancer is able to distinguish between types and also to acknowledge lifestyle effects in certain cancers eg bowel cancer & breast cancer without shaming & stigmatising. I have heard complaints related to lung cancer but not other forms. As you mention our supposed diabetes organisations must take a large part of the blame for this IMO and the more I think about it the more likely I think it is that this stigma plays some part in poor medical care.

      On a positive, note it is good to see the Australian Diabetes Behavioural Research Centre in Victoria doing some work on diabetes stigma.

  5. You are spot on as usual Melinda. I could write pages about the errors from HCPs that I have experienced in hospitals and the devastating results, but I won’t. I will give MHO about what can be done. Yes more education into the complexities of diabetes is needed, yes more education about the differences between T1 and 2 especially to reduce the shaming and blaming. (Just on a positive note at a major private hospital in Brisbane a nurse asked me a question, didn’t believe my answer, looked up my chart and said, “you’re right, I should have believed you, we are taught always to believe the patient”). Now that’s what I would like to see more of – that kind of teaching. Back to my point. Through this forum and also Reality Check I have become more assertive with HCPs. I now question why tests are needed, tell them how I think their proposed treatment will affect MY diabetes and refuse to go ahead if I don’t agree with it, I pull them up on their use of language and putdowns, e.g. “What did you eat to get your level so high?” In fact I must be every doctor’s worst nightmare and I’m sure they have a special code in their notes to warn others about me (I sometimes read referrals LOL). But if we were all more vocal surely the tide would eventually change. Doctors are not gods – far from it. We have the right to be treated with dignity and respect and the right to appropriate care. If we don’t get it complain, take it as high as you can. Other minority groups have achieved it and so can we.

  6. Jen, your comment that ‘doctors are not gods’ reminds me of the old riddle:
    What is the difference between God and a doctor?
    God doesn’t think he’s a doctor. Boom, boom.

    1. LOL Jane, also is the old saying that doctors bury their mistakes. Doesn’t the Hippocratic Oath say something about doing no harm. Doesn’t hurt to remind them of it sometimes.

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