Whose risk is it anyway? How protocols fail real patients

Nine weeks ago I broke my fibula. Nothing dramatic, just an awkward foot placement stepping out of my front door and it snapped. A simple, clean break. Weber A. Well separated, but ‘stable’. The prognosis was good – six weeks in a cast, the first four non-weight-bearing. I’d been due to run a 5k for my partner’s birthday just six weeks later, so that went out the window. I revised that goal to 5k ‘by the end of 2014’.

Not ‘just’ a broken fibula

The fact that I have Addison’s makes things a little more complex. If a person without Addison’s breaks a bone their body mounts a cortisol response to help with shock and then with healing. Mine doesn’t, so I had to manage this myself, with only anecdata and one study of cortisol levels in elderly people with hip fractures to go on. But I managed – I even did my own IM steroid injections so I could stay out of hospital – better for me, better for the NHS.

I also have diabetes, so I had to think about hypos. The crutches present two problems: having poor balance during a hypo could be disastrous, and moving around on crutches is itself a form of exercise and as such can cause rapid hypos. I have osteoporosis so falling from a standing height could result in a broken arm or broken ribs, which would then put me in a wheelchair. So I modified my diet and my insulin to low-carb and run my blood sugar slightly high. This is not ideal. It’s uncomfortable, means getting up to pee two or three times every night, and I struggle to maintain my weight anyway, but running ‘hot’ is viable for six or seven weeks.

Time isn’t always a great healer

Unfortunately my fibula didn’t heal within the standard six weeks. The current x-ray, after two months, looks no better than the one done at two weeks. There is a high probability that I will need to have surgery to put a plate and screws on my fibula, with a bone graft to encourage the formation of new bone. That 5k is getting further and further away.

I want to be treated as a system, not a component

I have all my medical care at the big teaching hospital in Leeds where they have enough patients with my rare condition to have genuine expertise. But when I broke my ankle, the ambulance would only take me to our tiny DGH, so my fracture is being managed by an orthopod with no access to my medical records. If I need to have the surgery, I will have it at my main hospital. If there is a decision to be made about whether surgery is the right treatment and what specific approach might be best, ideally my medical doctors (diabetologist, addison’s specialist, bone-endo) should have the opportunity to consult on this decision.

The protocol states that the need for surgery in delayed union of the fibula should be determined at 12 weeks. I want to have my fracture care transferred to my main hospital ahead of that decision, so that in week 12 my x-ray is done at the big hospital, and my previous x-rays have already been transferred across. (I’m trying to ignore the fact that my garmin, fitbit, myfitnesspal, google maps and glucose meter all integrate automatically while for a Doctor to view an x-ray taken at a Hospital 30 miles away requires human beings and complicated admin.)

Ideally, I would like the decision moved forward a little – if it’s not healed at 11 weeks, is it really going to be healed at 12? I can’t keep running my blood sugar high indefinitely – I’ve already had two bacterial infections and three fungal infections during this nine weeks.

So, at fracture clinic on Tuesday, I made two requests of my orthopod:

1) Please transfer my care to the main hospital, where I will need to have surgery anyway, so that the decision about surgery can be made in a holistic and timely way.

and/or

2) Please consider taking a look again a week or two earlier. If there has still been no further progress then we can probably make a decision at that stage.

He turned me down on both counts. He will make the decision about surgery himself, at week 13, and if he decides, in isolation from my medical doctors, that I need surgery, he will start the transfer process then. This will be the first week of December, and it will take 1-3 weeks to do the transfer.

The middle of December is not a good time to have a referral for a semi-elective surgery. Christmas schedules and winter pressures (ice+drink=ankle fractures) will put pressure on limited resources. I also know that Leeds orthopaedics is tragically one surgeon down after one of their lower-limb trauma surgeons died in the surfing accident in Cornwall. Plus I will need a bed overnight, not just a day admission. Chances are, I would be waiting until mid-January for my operation. This means that I would be out of plaster again at the end of February. After six months largely in a cast I am warned by my physio that it’ll take around another six weeks to get back to walking comfortably. So, I should be back driving and walking by Easter.

Whose risk is it, and who decides what a good outcome looks like?

The orthopod’s concern is that there is a risk to jumping the gun and giving the go ahead to surgery that I might just about get away without having.

I understand his concerns. I will need to have two general anaesthetics (one to put the metal work in, another to remove it a year later). There is a risk of infection – higher because of my diabetes and Addison’s. The bone graft may give me a new injury in my pelvis. There will be scars which may not heal nicely. There is the possibility of a nasty leg break if I twist my ankle while the plate is still in place. The risk of each of these is small – the majority of people have a good outcome.

In the meantime, I am unlikely to get away with an extra period of running my blood sugar high without infections anyway. But these will be chest, ear, skin, eye – not bone or the surgical site, so they don’t figure in the orthopod’s calculations.

There is also a toll on my mental health. I am depressed and anxious and becoming more so. I have aspergers and I manage my anxiety by walking and running and spending time with my dog. Sadly our dog died last week. We will get another dog, and this will make a big difference to my mental health, but we can’t do that until I am completely mobile again.

Here are the risks/rewards of the options as I see them:

Option 1: Early transfer to main hospital, surgery decided at 11 weeks.

  • moderate risk of unnecessary admin burden to NHS of transfer if surgery not required
  • very low risk of serious surgical harms (GA, infection, pelvic graft complications)
  • certainty of post-op minor harms (vomiting) and need for 1 night hospital stay
  • moderate risk of harms as a result of inpatient stay (insulin error, cross-infection)
  • very high possibility of being pain free and walking unaided in February

Option 2: Week 13 assessment at DGH, then transfer to main hospital.

    • very high risk of complications from high blood sugar – infections, dehydration, ketosis, weightloss
    • moderate risk of blood sugar complications triggering Addison’s crisis
    • high/moderate risk of emergency admission due to the above
    • high risk of not being pain free and walking unaided until April
    • high risk of increasing depression, anxiety
    • moderate risk of serious breakdown in mental health
    • certainty of further loss of fitness, further loss of muscle in the affected leg

Option 3: Week 13 assessment, ‘manage conservatively for a further 3 months’

  • risks as Option 2
  • certainty of no return to running / hill walking for several months
  • some risk of re-fracturing during the rehabilitation period
  • moderate risk of longer term poor outcome in ankle ligament strength
  • moderate risk of still needing surgical fixation at 6 months, incurring risks as Option 1.

You can have any colour you want as long as it’s red

My orthopod presented me with the illusion of choice, because he expected me to want ‘anything but an operation’. But when I said “I choose the aggressive path – getting back to 100% fitness is the only outcome that I really put value on” he told me that it wasn’t my choice after all.

I don’t believe he could see all the risks above – he certainly didn’t appear to be taking them in when I tried to explain them to him. He was concerned about my diabetes and risk of infection, but only with respect to the fibula fixation procedure – he could not make the leap that if I am more likely to get a surgical infection then I am more likely to get any infection. Non-surgical complications of the consequences of managing diabetes while on crutches appear to be off his radar.

Clinical queueing systems are designed by butchers

I feel awkward about writing this part, because there is shame attached to exposing any belief that I should be treated as ‘special and different’ within the NHS, but I’ve come to the conclusion that if the purpose of the NHS is to relieve suffering and promote wellness, queues that are based on clinical need on a single axis are morally weak.

I am in the control arm of a 3 year study into different treatment approaches for Addison’s. For the study I have to keep a diary that documents illness and injury and need for extra steroids. In the last year I have been ‘well’ enough to function normally for a total of about eight weeks. I’ve spent 2 months of the last 18 in hospital as an inpatient, and as many days on day visits and/or patch-up acute care. Like many people with long term conditions, my good days are limited. Much of the time there is nothing more that we can do to increase those good days – we just have to live with them. But in some cases, the NHS has it within its power to relieve an acute problem and return us to whatever our ‘normal’ is.

I think people with debilitating LTCs should get a queue jump.

Currently we order treatment queues on the basis of the single problem that whatever is at the end of the queue will address. As if we have been neatly sliced by butchers into our separate limbs and organs. I think we should provide queueing that takes into account the whole person’s health situation. If you are unlucky enough to have a serious long term health problem, and then doubly unlucky to suffer an unrelated, resolvable, acute problem, you should be a priority.

I also think that we need movable dotted lines between undertreatment and overtreatment that are able to take in the whole clinical picture, not just the specific problem being treated. I understand that in a 38 year old with no other health problems, proceeding to surgical fixation of a delayed union fibula at 10 weeks would be over-treatment for the small percentage of patients who have a magical union acceleration in those last 2 weeks. But for me, no, I don’t believe it would be over-treatment.

I am, right now, suffering (not just at risk of) systemic harms as a result of my unjoined fibula. Because I had to run my blood sugar high I developed a nasty bacterial infection in my otherwise mild blepharitis (inflammation of the eyelids). The antibiotics I needed gave me GI problems, though they cured the infection. The GI symptoms destabilised my Addison’s and I spent all day Saturday in hospital having IV fluids to remedy the problem. My BMI is now back below 17 for the first time since I started insulin 9 months ago. In about 3lbs I’ll be in the danger zone where previously I’ve had crises due to ketosis once I’ve run out of fat to burn.

But the orthopod is worried about the fracture and the 12 week window. Because in silo medicine all our protocols are built on pieces of bodies in isolation. We need to knock them off their pedestals. Burn them, because evidence based medicine always excludes the messy complexities of real patients with real, multi-system, health problems. Evidence based health care protocols are suitable for the otherwise-well people, and they only look like gold standards from a place of healthy privilege.

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One thought on “Whose risk is it anyway? How protocols fail real patients

  1. meltwicediabetes

    A perfect illustration of the failures of so-called “evidence-based medicine” and of course the illusion of shared decision making. Just really sorry that you have to go through this, all the best for your recovery.

    Reply

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