Fancy hammers and gritty life - The misalignment of modern medicine and chronic disease

My life is delightfully complex: I have a family, kids, a career, chronic disease, and a house full of half-completed projects.

I'm not special in this regard. For those of us facing the challenges of one or more chronic diseases, it's another complexity layered on top of all the complexities of modern life.

Some days my type 1 diabetes fades into the background, other days it takes centre stage, but I'm never truly free of it. I probably never will be again. This means, there is almost no decision I make, no life direction I undertake, without considering my chronic disease. It's an annoying little passenger on this life journey, but one I can't afford to ignore.

The funny thing is, even though my career literally involves talking about type 1 diabetes every day, I don't think about my own management that much. Most of the time, it's just an extra consideration on the list. A lot of people are surprised by this. They think that because my mission is to improve care for people living with type 1 diabetes, I must obsess about my management, I must be perfect, I must have this nailed.

There is no such thing

It says it in the title, a chronic disease is chronic. It's there for a long time. In most cases, it can't be cured, only controlled.

If I obsessed about that control every moment of every day I'd have no time for anything else, and, I'd still have the damn condition!

What does that mean? It means that it doesn't matter how fancy my control gets, how smart my management strategies are, or how "good" a patient I am, it's still going to be there tomorrow. Still an unwelcome passenger on the journey of life.

So why do we treat it like it's a thing to be conquered? A disease to be cured? A problem to be solved?

Because that's the toolkit we've brought to the table. We've got better and better tools for fixing specific problems. At deploying just the right intervention to fix the exact problem we're looking at. It's the era of hyper-specialisation.

Hyper-specialisation

Trying to navigate modern medicine feels like walking into a modern hardware store looking to hang up a picture. When I was young, that was pretty much the choice between a trusty old nail in the wall, or buying a plastic anchor to stick a screw in the wall (a fancy version of the nail in the wall). Have you seen how many different types of wall anchors are available these days? I went to get a wall anchor for a picture frame the other day and I stood in front of a literal sea of anchors, paralysed by indecision. What kind of wall did I have (I thought the answer was brick, but apparently there are many kinds of brick)? How much did my picture weigh? (who knew I had to weigh my picture first?), what kind of material did I want? (um, the good kind?).

Once I finally found the anchor I wanted I happily trotted over to the drill bits to buy the right bit for my anchor, at which point the range of choices got to me and I fled the store with a roll of double-sided tape and new questions about my manhood.

Is modern medicine any different? Getting an answer to a health-related question seems like a complex game of choosing the right sub-speciality. It's like the search for buried treasure to find the right healthcare professional for my particular issue. While the journey can be a bit rough, this can be amazing when you're facing an acute, discrete injury. I am currently grappling with a nasty case of ankle tendonitis. And through byzantine navigation of specialists I have eventually arrived at not only a doctor who is an expert at ankle pain, but an expert at tendonitis. Oh and not just any tendonitis, but the tendonitis of the specific tendon I've injured. It's like I've found a doctor just for me - isn't that the dream?

Well, I think that's the Kool-Aid we've all started drinking and it doesn't work when we get to the wonderful world of chronic disease. Because while I might have had to wait the couple of months it has taken to find my personalised tendonitis doctor just for me, at least there's the possibility of a fix. When it comes to my type 1 diabetes, not only is there no fix, but what works today might not work tomorrow, and what works for my type 1 may not work for what's going on in the rest of my life.

You see, I could, if necessary, take a couple of weeks off of work to fix my ankle. Yes, it would be inconvenient but actually, I could find a way to make that happen. Knowing that afterwards my life would be better and my dance moves much improved (actually that's nothing to do with my ankle mobility...).

When hyper-specialisation meets gritty reality

But with type 1 diabetes, life marches on. It has to. Type 1 isn't going anywhere. And it impacts every aspect of my life. Every aspect. So finding my perfect healthcare professional with the magical fix for my woes 'aint gonna happen.

I long ago abandoned the hunt for the magic fix and realised that chronic disease management is about so much more than finding increasingly sophisticated tools. It's about minimising the impact of the chronic disease on the life I want to live.

Who knows what life I want to live? Me (well, as much as any of us know what to do with our lives...).

The goal is minimisation of impact, not cure. And that makes all the difference. Because instead of focusing on the thing to be fixed, I first have to work out what I want to do and what barriers are popping up that I want to try and overcome. It's all about assessing where my life is going and then working out what, if anything, I need to do in the diabetes management space to enable that.

This is where the wheels start to fall off when it comes to modern medicine. As a person with a complex chronic disease, I have already been shunted down the specialisation pathway pretty hard - I'm a type 1 diabetic (yes, I'm using the label provocatively here). So the specialists are already sharpening their tools, ready to deploy their "fixes" to my pancreatically challenged body.

They are the quintessential hammers with a nail. They have a "solution" for me and by gum, they are going to hammer it into me (pun intended).

But will it make any difference? Will that sub-specialities sexy medicine, technology, education or strategy make an iota of difference? ahem, if the patient could be quiet and leave us to pancreas tinkering, please...

While medicine aims to fix what is broken the person with a chronic disease looks to get on with their messy life. A life that involves so much more than the condition. A life that now involves adding chronic disease self-management onto the endlessly long to-do list of modern life.

And as we push for increasingly specialised and sophisticated tools to address the disease, we forget the person. As I've always said, no one needs to know my life story if I'm pumping blood out of a severed artery, but if I'm going to live for decades with a chronic disease, you'd better believe I'm much more interested in my life trajectory than my blood sugar level at any one moment.

Your hammer might be just what I need one day, and the most useless paperweight the next. But if all you've got is a hammer...

Person-centred planning - the panacea?

You might assume that the answer is what we've spoken about in health circles for a long time - patient-centred care or patient-centred planning. And you'd be partially right. Certainly step one has to be remembering that there's a person surrounding that insulin-challenged pancreas. But there are some very warm, person-centred specialists out there who still go to their cupboard of tricks and find only a massive array of different hammers in the cabinet. But what if I don't need a hammer in the first place?

This is where I believe we have the biggest opportunity. Not in improving the standard of specialist care. Not in developing increasingly sophisticated medicine and technology. But in bridging the gap between real life and medicine in a world of chronic disease.

This requires so much more than making sure your doctor looks you in the eyes and asks how your day is going before they grab the hammer. It's a prescription for a whole new paradigm of care.

Promoting a healthy life with chronic disease

We need a hard right turn in healthcare for people living with chronic diseases. I believe there are at least three components to a successful chronic disease model that we will need to address the era of chronic disease we face today:

The centrality of self-management: Self-management as a concept isn't new. The idea that a person living with a long-term condition should be in charge of their healthcare isn't rocket science. The reality is that every person living with a chronic disease, not under 24/7 medical management is a self-manager. They are making the minute decisions day to day that determine how their life with chronic disease will go. But I'm not sure we've truly embraced this idea as a healthcare system. So many times I meet people who are slaves to the system. Dependent on the care and instruction of their healthcare team. Encouraged to defer to the experts. To save up all their challenges for their next healthcare appointment. Bluntly, I think this is attitudinal and cultural and deeply embedded in the healthcare system. Despite substantial efforts, I think much of the healthcare system still positions itself as the expert in the condition and therefore the expert in what must be done. By doing so, the healthcare practitioner expects the patient to fail. I'll say that again - expects the patient to fail. If we are the font of all disease knowledge then how can a lowly patient possibly succeed without us? And if there is a slip-up - well, it's not the fault of our very special sub-speciality is it? Until we truly accept that life with chronic disease is messy, complex and indivisible into its component parts we have no chance of empowering patients to take charge of their lives. We're saying to people once you have a chronic disease you're no longer able to live an independent life. You'll be dependent on us forever so line up like a good little person and take your medicine... That's BS and it will never result in a better life for that person.

Person-first planning: Person-centred planning is great, but we need to lift the practice well away from our sub-specialities if we ever hope to treat people as complex human beings with goals and attitudes that may differ from our own. It is my genuine belief that the more specialised we are, the less able we are to do this. We become hammers with nails. This is an exciting space for peer coaching, for mentoring, for health-coaching, for the involvement of people motivated by and charged with exploring each individual's life goals and then the potential impact of their chronic disease on achieving those goals. It is an irony that in the modern world of increasingly precision medicine and sub-speciality what we really need are experts in life, empathy, warmth and humanity. The one speciality we don't seem to want to invest in is understanding the person.

A wide and diverse toolkit: Yay! There is a role for specialisation! Of course, we want the best tools, techniques, medicines and technologies. But if they are ever to have an impact on each person's life, we're going to have to be very good at selecting the right tools at the right time. And remember that some of them may have nothing to do with the disease itself. If someone has type 1 diabetes control nailed down but only if they don't exercise or eat a different meal, the support they need is not with blood glucose control, it's with letting the reins loosen and gaining new skills and capabilities in other areas. If someone is burning out from all the specialised tools at their disposal, guess what, another one won't help. The trick will be having guides on hand who know the full range of tools and techniques available, and who can triage, evaluate, direct and nudge in the right direction. Who has the person's goals squarely in mind when they finally do reach for that hammer... And having a person who knows they are in charge of their self-management and knows that they hold the key to whether any tool will actually work for them.

This is a brave new world of healthcare. But it's ultimately a very human one. And for all of us trying to make the best of the cards we are dealt, it couldn't arrive soon enough.

I'd love to hear your thoughts on what else is needed to change healthcare for the better. One thing I know is that chronic diseases aren't going anywhere so there's pretty good motivation for getting this right.