Almost everything we do is about efficiency. What about the patients whose version of efficiency is actually to be less efficient? Andrew Weatherall writes a thing here about kids whose version of hurry up is actually ‘slow down’ – those on the autistic spectrum.
I really like kids’ anaesthesia. Not just the blowing bubbles with the patients bit either. I like the people I work with. I like the challenges we tackle together. I like seeing branches of medicine in rapid-fire action, physiology and pharmacology and the negotiations between the two.
I always come back to the trust from our patients and families though. We have a pretty short time during a lot of stress to turn the experience into one that feels OK. Not just OK for the kid either. OK enough for the parents to find the interminable time beyond the sight of their child not quite so awful.
It’s success on that front that I think I mark hardest at the end of the day. This is what makes a particular group of patients extra challenging. It’s also these kids that have me worrying that we’re set up to fail them every time.
A Shifting Spectrum
Exactly what autism means is a little hard to pin down, particularly now that the classification favoured in DSM-V shifted in 2013. Asperger’s, so often described as a high-functioning version, doesn’t exist any more. If you go with the International Classification of Diseases you get a different version again.
For the clinical anaesthetist though it’s still worth thinking about the core problems: social communication difficulties, alterations in sensory processing and restricted or repetitive behaviours. It’s not enough to want to retreat up the nearest fake indoor plant at a horrible function to avoid small talk either. The issues have to be pervasive and occurring in lots of settings.
Of course, even once you have those elements the variability in presentation is massive. That’s the other thing with a spectrum. It tells you there is a wide range.
Things That We See
The behavioural stuff is sometimes interpreted as an attempt to add some order and control to the external environment, though this definitely doesn’t hold in all. In some patients you do see repetitive movements, a need for routines and a desire for the environment to be consistent. Mess with the routine and anxiety isn’t far away.
The newly added part of the diagnosis is the sensory processing element. Patients may over- or under react to sensory input. They may get intense pleasure from experiences, such as spinning lights on toys. Everyday sound inputs may be overwhelming. Touch meant to feel comforting may be intensely disliked. It’s just about a difference from the norm.
Then of course there are the social communication difficulties. The sort of difficulties that might make an encounter with a stranger who wants to hold a mask near your face pretty confronting.
Those are just the core diagnostic features. There are other elements that are often associated with an autistic spectrum diagnosis. That includes intellectual disability, motor coordination issues, mental health issues, displays of aggression or self-injury, epilepsy and sleep disorders.
A condition with three core diagnostic features of variable presentation and penetration coupled with another six commonly associated facets that may or may not be present. You need a spectrum because otherwise you’d have to classify too many entirely separate conditions.
What do we do then?
Let us revisit what we impose on a kid when they come for surgery. A guaranteed change to the routine. Altered meals, altered plans for the day. New people over and over and over, all day long. New people means new social interactions. Not just new social interactions somewhere you know and understand either. It’s all new.
You might have techniques to cope with any anxiety, but none of those are possible either because they’ll intrude on others, or a key element is missing in this new place.
And along the way you’re assailed with new machines and noises, and monitors that have to grab onto your finger and later a recovery room full of all the things you’d usually not put up with. I haven’t even added the experience of all of this filtered through the effects of all those anaesthetic medications. Yikes.
When I think of everything about the way the day of surgery is set up in all the hospitals I’ve worked at, I get a bit disappointed that things are so grim. Our set up is optimised for flow of patients through the unit. The one group of patients who could most do with a good set-up meet a whole system designed around efficiency that pretty much guarantees we’ll fail them. You can’t blow a bubble big enough to overcome that. And anyway, the bubble might be a bit too intense for some of the kids.
Making Things Ideal
So what should we do in an ideal perioperative sleep nirvana? (That nirvana reference is based on a grasp of Buddhism that is probably flawed, not the famous Seattle band of the same appellation; I don’t equate that band with sleep.)
Following in no particular order are the things I’d like to challenge myself to do, or the place I’d like to see us set up. It suffers in its own way from the tremendous range of patients we’ll actually meet with the label of being on the autistic spectrum. Of course just saying that ‘you can’t cover all the kids with these things’ doesn’t excuse us from trying to help as many as possible.
1. Lay the groundwork
The times I’ve known enough to plan in advance, life has been a whole lot easier. Finding out in advance what works and what doesn’t, any special interests that might help comfort or motivate the kid, what the experience will be like for this particular child and signs to look out for that might suggest stress can be a big help.
The best example I’ve seen of this was provided by a local paediatrician following up a patient they’d referred for surgery. The anaesthetist involved received a written planner for the patient in advance. It included basic medical info but much more extensive sections on particular things about the operative experience that worried the patient, the things they found helpful if they were getting anxious, the signs to look out for that might suggest anxiety was becoming an issue, alternate ways to communicate with them that they could interpret more easily and even premedication that had helped before.
That’s the sort of information that lets you really plan the sort of experience for a patient that you can feel good about at the end of the day.
2. Listen to the parent
Parent or carer, they live it every day. A superior knowledge of pharmacology doesn’t give you the upper hand for these kids. Every bit of advice you can get is likely to be handy.
3. The routine
Are there ways to make the disruption not so bad? Is it feasible to go first in the day? Can the fasting be optimised? Are there some elements of the patient’s routine that can still happen so it’s not like every part of the world gets uprooted? Could we maybe not worry about switching to theatre clothes, at least at the start?
Everything we do is at least a bit disruptive, but can we make it less that way?
I have a low threshold for providing premedication, even though I don’t tend to use it much in my other theatre days. For the super anxious kid in this setting though it can be pretty fantastic.
Interestingly in a recent retrospective study looking at premedication in kids on the autistic spectrum having dental surgery, Arnold et al. found that kids on the spectrum were not more likely to receive a premedication with midazolam, which some would call a “standard premedication”, but would often receive a bit more to really make sure it works.
They were, however, more likely to get the sort of premed that leans on a bit more pharmacological oomph (say with the addition of ketamine or other agents). Perhaps the most surprising bit was that the kids on the spectrum were more likely to receive no premedication (15% receiving no premedication vs 8.2%). That is absolutely counter to what I’d expect and the reasons just don’t seem clear.
5. A better space
The ideal environment for a lot of these kids is exactly the environment we’re not going to provide. Maybe we can do it transiently for the induction phase though by making sure auditory inputs aren’t overwhelming or that the lights are down. Once they’re out the other end it gets harder.
The ideal recovery room has great big areas for looking after patients, high visibility, monitors that are bright and easy to read and alarms that you’ll pay attention to because you can hear them well.
So they’re pretty much set-up the exact opposite of the environment we want. I’m not quite sure how you can get around this. Turn down the alarms a bit? Pull a curtain? Get the parents in early?
My ideal recovery room has an area with privacy, the ability to produce low lights and reduce other sensory inputs, an easy spot to display the management plan and an ability for the staff still to have good visibility of the patient and easy access to other patients. I don’t know how to make such a design work, but that’s the ideal.
Oh, the ideal area needs a ready supply of ice blocks too. Alright, that last one is purely about me and late night cravings.
6. A quicker trip
Of course one of the best ways to decrease the anxiety of being in hospital is to not be in hospital. Any options that are feasible to keep things moving, like a slightly earlier discharge to home with a good medical management plan in place will probably be better for the patient than trying to figure out which Xbox game might be OK.
So there’s a spectrum of thoughts for the spectrum. Perhaps the underlying theme is that there’s a need to be a lot more flexible in how we get the job done when it comes to these patients.
I should point out there’s not one of those elements above that I haven’t failed myself at some point along the way. It’s a target to aim for. With the prevalence seemingly increasing, they’re all things that are worth more attention. I feel like if I achieved them then I’d be able to go home at the end of the day with a pretty good scorecard.
Maybe even enough to reward myself with one of those ice blocks.
Clearly this can’t be an exhaustive coverage of all things related to the autism spectrum. It was very heavily influenced by the review by Taghizadeh et al. from 2015. As always the source literature is very informative so I’d go and have a look.
That review in the context of dental cases is this one:
The image in this post is from flickr and was posted as Creative Commons by Curtis John. It is unaltered here.
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