Over the weekend, an embargoed press release arrived in my inbox with a few different pieces of research that would be presented in coming days at EASD.
Being registered as press for diabetes conferences means getting an advance peek into some of the big stories that are likely to generate a lot of interest and discussion. This email offered three or four pieces of research, but it was the first one listed in the subject heading that made me catch my breath and hesitate on the button to read the email beyond the header,
Shorter. Life. Expectancy.
The three words ran through my mind over and over before I steeled myself enough to open the email and read the release, then the abstract and finally the full article. As confronting as the email header was, there was nothing in there that I didn’t expect, and nothing really that surprised me. It’s not new news. I remember being told early into my diagnosis that I could expect to live 15 years less because of diabetes; something I casually announced to my sister one night when we were out for dinner. Through tears, she made me promise to never say that again, and I just hope she’s not reading this right now.
But even though there was nothing in there that made me feel especially concerned, I did bristle at the conclusion of the article, in particular this:
‘Linking poor glycaemic control to expected mortality … may incentivise … people with diabetes and poor control to increase their efforts to achieve targets.’
I’m ignoring the language here, because even more problematic than the specific words in here is the sentiment which I read as ‘scare people and threaten them with early death to try harder’. Unsurprisingly, I find that horrendous. Equally horrendous is the assumption that people are not already trying as hard as they possibly can. It’s not possible to increase efforts if someone is already putting in the maximum.
Over the last twenty-two years, my diabetes management has sat at pretty much every single data point along the ‘glycaemic control’ spectrum, from A1Cs in the 4s and 5s all the way up to the mid-teens. There is no way that being told that I was going to die earlier would have made me pull up my socks to do better. In fact, it’s likely that if anyone had, at any point (but especially when I was sitting way above target), told me that I was sending myself to an early grave, all that would have done was send me further into the depressive burnout hole I was already cowering in.
It’s tough going knowing that the health condition that I’m doing everything in my power to manage as best as I possibly can is going to contribute to cutting my life short; that despite those efforts, I am likely to see fewer years of my daughter’s life and be outlived by most of my friends. Placing any of the blame for that on me for that makes me feel even worse.
I’m not here to argue with the article – it was an analysis of an audit of data out of England. I’m not here to say that this sort of information shouldn’t be shared, because of course it should be. Understanding outcomes, what drives them, interventions that can help and any other factor that provides better results for people with diabetes is a brilliant thing. These sorts of results could be used to highlight when and how to intensify and prioritise treatment options.
I do, however, question the way that the information will be used. Also, from the article:
‘Communication of life years lost from now to patients at the time of consultation with healthcare professionals and through messages publicised by advocacy groups … and … national/international patient facing organisations will be of great help in terms of disseminations of the conclusions of this study.’
I would be really dismayed if I saw any diabetes organisation using this information in a comms campaign, as I fear it could add concern and trauma to people living with diabetes. I worry about how it could be interpreted by well-meaning loved ones to say, ‘If you don’t start looking after yourself, you’re going to die,’ or something similar.
For the record, one of the other studies highlighted in the email was about hot baths and diabetes. The lowdown on that is having regular hot baths may improve cardiovascular risk factors in people with type 2 diabetes. I’m going to do an n=1 study to see if that also helps people with diabetes.
4 comments
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September 24, 2020 at 6:19 pm
Alex Erskine
Enjoy the bath!!!
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September 24, 2020 at 8:30 pm
Martin Scivier
Hi Renza, Totally agree with you. Most PWD try thier best to achieve good outcomes. Though not all succeed.
Incidentally I watched you with Kamil & Cherise the other day. Unfortunately I was late to the debate. Hope you slept well! Regards, Martin
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September 24, 2020 at 11:29 pm
Once Diabetes (@MelindaSeedT1D)
DId the study find that telling people they had shorter lives if their a1c was higher work-is that what the study find OR did it just link hba1c to life duration? “Cos if it’s the latter, then they have zero right to conclude what might ‘incentivise’ people and wow I hate that made up verb from a noun.
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September 25, 2020 at 12:58 pm
Rick Phillips
LOL, I do not know who did that study but they are missing the real point. First, we not be truthful with recently diagnosed people, But we also must be compassionate. Having a single data point ignores that people need encouragement on a spectrum. No one size fits all people.
I heard the worst stories abut diabetes at training. I left and ignored diabetes for the next 30 years. Yep lots of good it did me. what finally got through were words form a PCP. When you are sick and tired of being sick and tired, you will take care of your diabetes.
That is where i got too.
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