This is a True Story
About ‘optimising’ and over the counter medicines.
The TV series Fargo begins each episode with the phrase ‘This is a True Story’1. Elements of the phrase fade into the background in varying ways across episodes.
‘This is a Story’
‘This is True’
‘A Story’
‘True’
Is it even possible for something to represent truth and be a story at the same time?
Whoah, this has all got a bit philosophical for a pop culture reference, hasn’t it?
Indeed, it has2.
The reason for this is because I think this phrase ‘this is a true story’ can be helpful to keep in mind when it comes to understanding people’s lived experiences of healthcare.
Right, OK Lauren. Why?
I thought you’d never ask.
Firstly, and I know it should be obvious but I’m going to make it explicit because I think it sometimes gets lost…healthcare is all about people. And people who live in the world experience the world. Healthcare isn’t something that happens to people, it’s experienced by people.
Because of this, I tend to think lived experience is pretty much the most important thing when it comes to matters of healthcare. Even in matters of death, arguably the worst possible healthcare outcome you can get, the overall dying experience has a long lasting impact on those who are present to witness it. Loved ones and healthcare practitioners alike. I’ve seen the impact it has on others. I’ve felt the impact it’s had on myself.
My mini-rant in the footnotes of last week’s post about why I think the term optimise should be banished from healthcare relates to this. So let’s just take a moment to make that more of a midi-rant, if you will.
Optimise for what - ‘truth’ or ‘story’?
I think it’s fair to assume that when most people use the term ‘optimise’ in relation to healthcare3 It’s intended to convey a sense of value. Something better than good. Preferably not bad. Definitely not catastrophic.
The way healthcare professionals and funders of healthcare services consider healthcare to be ‘optimised’ is typically based on metrics that can be empirically measured. Things like prescribing records, waiting times and lab results. ‘Objective truths’, you might say.
This isn’t necessarily because these metrics provide a great understanding of the value of a particular healthcare service. It could well be that they’re merely an easy thing to measure. And better to measure something than nothing, right?
Maybe. Maybe not.
The thing is, when we measure ‘objective’ indicators of performance within a system of care, it tends to influence the way the care is delivered and experienced. I mean, that’s kind of the point. But when ongoing funding of health services is linked to these types of performance measures it can create a tension between the agenda of the service provider and the needs of the consumer. This can result in healthcare interactions that focus on optimising key performance indicators rather than listening to the needs and wants of consumers. Optimising for ‘truth’ over ‘story’.
I’m not saying objective performance measures are all bad and need to be put in the bin, I just think they neglect to consider the consumer’s perspective and overall healthcare experience4. Their story is assumed to be inferior to the truth. And so, I think the term ‘optimise’ is kind of misleading. And, dare I say, a bit patriarchal.
Now, when it comes to a person’s experience of using medicines, the elements of lived experience that can be considered ‘objective truths’ are mostly to do with the drug itself. The nature of the medicine that’s been prescribed, like the drug, it’s form, the dose. The event of having that medicine dispensed, like the time, date, location. And the physical artefacts of that event, like the prescription and the medicine itself. The rest, is story. Perceptions of the experience created within the individual themselves. Perceptions shaped by a lifetime history of personal experiences, beliefs and attitudes. Perceptions shaped by interactions with other people’s experiences, beliefs and attitudes5.
If we think about the simple event of having a medicine dispensed, I’d hope it’s quite obvious that the person who has the medicine dispensed to them is going to tell a different story about that event than the pharmacist dispensing it to them. And this story will evolve even further if it’s relayed to a third party…like a researcher who’s sharing this story in a newsletter a few years down the line…
Which is where we find ourselves today.
Yes. This, dear reader, is what we call a long winded introduction to the ‘true story’ of Shirley, a delightful 70ish year old lady I had the pleasure of talking to a few years ago about her experiences of using medicines during cancer diagnosis and treatment6.
Shirley’s true story
I visited Shirley in the home she shared with an extremely friendly, albeit yappy, Maltese terrier that she referred to as ‘the wee man’.
Shirley was unmistakably Irish. A softly spoken woman with a lilting accent that was lovely to listen to in person and a total nightmare to transcribe from a recording. Needless to say, I listened to our conversation many, many, many times7.
Shirley maintained an incredibly positive outlook on life despite experiencing what anyone would describe as significant loss and grief following the deaths of her son and husband in reasonably close succession. But she had the wee man, and he brought her joy. That was obvious.
This was a woman who took it upon herself to make the most of what life dealt her. She had an obvious quiet resilience and strong sense of self. So it didn’t really surprise me to hear about how she applied the same kind of attitude to matters of her health. She was super pragmatic. Have a problem? Take the medicine and accept your circumstances. Deal with it.
And this is just what she did when she started experiencing heartburn. Don’t let it get in the way of life. Take an antacid and move on.
Who could blame her really? This is what the adverts from drug companies tell us to do all the time. There’s one that I find particularly infuriating that’s doing the rounds in Australia at the moment ‘helping’ people understand the six signs of heartburn and indigestion8. It closes by recommending people who experience these symptoms take an antacid. And if problems persist? Well, they’ve got an over the counter proton pump inhibitor that you can use for that.
You can watch this annoying advert here, or (recommended) just take my word for it that it’s stupid, and move on with your day:
The reason this advert infuriates me so much is because of stories like Shirley’s9.
You see, taking antacids to ‘fix’ the problem of heartburn is exactly what Shirley did. She managed the problem independently, doing what she thought was best. Sipping on her liquid antacid whenever she felt the need. Until one day, when Shirley visited her General Practitioner about an unrelated matter. She thought she’d ask the GP about getting a prescription for the antacid. For cost reasons really, nothing more.
Thankfully for Shirley, she had a GP that did her job properly. The GP promptly let her know she wouldn’t prescribe anything long term until they understood what was causing the problem. A few weeks of testing later and Shirley was found to have an advanced stage of colorectal cancer10.
The result was obviously not great for Shirley. She had to have a big operation that removed a large section of her bowel and took a long time to recover from. This created ongoing issues with her confidence in being able to make it to the toilet in time. As a result, she no longer felt comfortable going for walks with the wee man, for fear of needing the toilet when out and about. She was alive and had a good prognosis, it’s true, but her quality of life took a big and irrecoverable hit.
Accessible doesn’t always mean safe
Over the past few weeks we’ve talked a lot about aspects of drug products and how they come to market. We’ve also talked a bit about what it means for a product to be registered by a regulatory body.
Generally speaking, products with greater risks become prescription only products, while those that have a broader safety profile are accessible without prescription, also known as ‘over the counter’. The reason I’m sharing Shirley’s story, is to illustrate that just because a product is accessible over the counter, doesn’t necessarily mean it’s safe when used regularly. Especially if it results in a delay in seeking help from a doctor.11
I don’t share this story to cast judgement on Shirley. I can totally see that she did what she thought was the right thing. But I can’t help thinking that her long term use of over the counter antacids may have contributed to her cancer being more advanced by the time it was diagnosed. And it does make me wonder about how we could do better. How each of us can be more open too seeking help for the things that continue to bother us. How perhaps we could all benefit from accepting that healthcare, like the rest of life, is a team effort. It’s not something we should try to do alone. And how those of us who are healthcare professionals could make ourselves more open to hearing and responding to people’s stories in ways that truly meet their needs.
Thanks so much for reading!
If you got this far, I’m guessing you either really liked it or couldn’t stand it - either way, it sounds like something that deserves a comment. Easy to do by clicking the heart and the button below.
Sharing this with someone else is also very useful and greatly appreciated. I know vanity metrics don’t matter, but I tend to think that in matters of healthcare the more people who know about this stuff the better. And I’m shy - I need all the help I can get.
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My understanding is that this stemmed from a tribute to the original Cohen brothers movie, which was loosely based on real life events. But that’s as far as it goes with Noah Hawley’s version. Which, incidentally, is a lesson in masterful story telling. Particularly season five which is one of my favourite TV seasons. Of. All. Time. Juno Temple is incredible. Incredible. Jennifer Jason Leigh has one of the best lines in TV history. And any production that can make me loathe Jon Hamm must be seriously good. I mean, it’s Jon Hamm. Even Mad Men didn’t leave me loathing him and that was an exemplary show. Don’t think you have to watch the first four seasons to enjoy Season 5. Just go straight into Season 5, it’s completely standalone.
I’m leaving the proper philosophy to the proper philosophers here, of which there seems to be quite a few. Please don’t judge me too hard, philosophy friends.
Which they do all the fucking time. Someone needs to do a study on how frequently ‘optimise’ is used in the healthcare literature, policy documents and marketing materials. It’s got to be a lot.
There is a growing amount of attention being paid to this within the realm of healthcare policy, but it hasn’t really made it into mainstream practice yet.
The conceptual term for this is medication experience.
Not her real name, but a real participant in my PhD research. To be honest with you, I’m still in the ‘don’t want to even look at my thesis’ phase of the post-PhD period. Not very helpful when I should be writing up publications. I’m considering this a first step to re-engaging.
Sooooooo many times. One of the really nice things about listening to it though, was the lovely way she spoke about her oncologist. A doctor who I’d previously worked with early in his career and had the pleasure of working with again just recently. I already thought he was lovely (in the most respectful and collegial way), but I do wonder if hearing her kind words about him so often primed me in some way when I saw him again later.
Here’s how you can really help people who are regularly experiencing heartburn - help them identify the underlying cause. Occasional use of these types of products is fine. Regular use is a sign to go and talk to a doctor. And change your diet, ease up on the booze and quit smoking. There’s that too.
This isn’t an exaggeration. When I first saw this ad, I was on vacation at a lovely little beach house down south. This ad tipped me into full blown rant mode about it for the entire weekend. Sorry, family. This is me.
Shirley wasn’t the only person who shared a story like this with me - and I only interviewed nine people! Unfortunately my other man Johnny’s GP wasn’t so on the ball as Shirley’s and he was prescribed proton pump inhibitors for some time before a more thorough doctor noticed his weight loss and found oesophageal cancer. Not good.
The danger of over the counter products (including natural products) delaying access to healthcare is a point that was made in the discussion about placebos in this post:
Great message to those who ignore health issues: don’t.
About that heartburn. It started for me when I was 7 years old. The doctor told my mom I was “faking it.” I had heartburn until I was 43. I ate a few metric tons of antacid.
And then I got a new doctor, who suggested I had a problem with gluten.
I changed my diet, and it went away.
Heartburn is the body’s engine light. It means something is wrong.
Ah yes, the old KPI debate - I think we’ve had this one before!
This made me wonder what you’d think about the patient report outcome measures approach.
Some interesting work in the gender affirming surgery space underway to develop a PROM for and with trans people. Currently surgical outcomes for trans folk are measured using PROMS designed for cisgender people - creates some problematic discrepancies ie. the experience of a cisgender woman having a mastectomy in relation to breast cancer compared to a trans person to affirm their identity.
Need to catch up to tell you more!