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Don’t forget the Bubbles 2018: An approach to managing children and young people with communication difficulties #DFTB18

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This is a rough transcript of my talk at Don’t forget the bubbles 2018

Imagine a busy shift (Emergency Department, Ward, Clinic or Assessment Unit) with people everywhere. It’s noisy, chaotic, distracting.  What makes things feel busy? It’s communication. It’s the interaction of people, with other people. Chatting, crying, screaming, complaining, laughing, pleading, discussing. It’s all communication. It also doesn’t necessarily need to be human communication: alarms bleeping, tannoys buzzing, phones ringing.

Communication tends to increase at times of stress or demand. Busy shifts are rarely audibly ‘quiet’ ones.

Communication is at the heart of medicine. It’s at the heart of this conference. It’s what brings science & story together: The ability to communicate.

And yet for something that is so important, so fundamental, so talked about, why is it we like to think that communication is a problem others have rather than being an issue of our own?

So this isn’t a talk about the communication difficulties my patients have, it’s really about the difficulties I, or you, have communicating with them.

Communication is the sum of many parts:

It can be visual – the anger or timidness in someone’s posture,

It can be vocal – the tone of someones’s voice.

It is in the words we say……

And those we don’t..

The amalgamation of the visual, vocal and physical aspects of communication creates a mechanism by which we share our experience of the world. A deficiency or problem in interpreting one has an impact on others. And these deficiencies can be very subtle. They are not confined to children with a diagnosis of autism or aspergers; they may affect all of us, at any time.

For example August in the UK is a time of national handover – new doctors fresh from medical school, or coming to paediatrics for the first time, join departments up and down the country. They will be discussing patients to their seniors and concentrating hard on delivering the best possible presentations. They often have dutifully elicited a thorough history, they may have managed to engage with a 4 year old and done a very good examination. But when asked how worried the mother is, or are the family happy we are sending their child home. They just shrug. They haven’t seen the body language or heard the tone of voice. They’ve not picked up those vital communication tools which can potentially avert an unsafe discharge even when all the other medical tests suggest the patient is safe to go home.

However, ultimately, they will eventually be able see these cues. With training and prompting we can teach our juniors to recognise the signs of distress, agitation, all the things that ultimately improve the quality of care provided to children.

But what if you can never read those patterns? What if you are essentially you are blind or deaf to the very aspects of communication that are most important to interaction. Imagine what a world that would be.

And then imagine that you aren’t troubled by not knowing. Because you can’t sense the anguish, that not sensing, anguish gives us. This is a meta-concept but it is important to understand as it gets to the heart of how we manage those patients who will struggle to interpret that we are trying to help them, even if this seems distressing.

Parents and carers of children with communication difficulties often say we may never know what their child, may or may not, understand. We can only be guided by our experiences of their behavior.

We talk about empathy and sympathy but these are constructs of emotion and feeling. I can’t actually see the world in the way someone else perceives it. I can make a guess about how challenging it is to be blind or deaf as I can close my eyes or block my ears. But even then that’s for a tiny period of time and I’m not immersing myself in the chronicity of these fundamental deprivation of the senses. Certainly when it comes to other forms of communication issues, some which may be very subtle, there is no real way we can recreate the challenges that an individual may face.

The only way you appreciate the world is through your own eyes and ears.

So when Sam, who is 8 years old, and has a severe communication and behavioural  difficulties,  presents to the emergency department, I can probably neither sympathise or empathise with him.  Sam is large for his age and probably weighs well over 60 kg. Sam is known to thrash out when he is angry and only responds to his parents and a few key carers. I know this because that is what is written in the assessment note and that is what everyone is keen to point out. “Sam is known to thrash out when his is angry”. It’s a shame this description is what defines Sam.

Sam got hold of a knife at home and has a deep laceration to the palmar aspect of his hand. He won’t open it but it is actively bleeding.

An educator may ask: How do we approach this problem?

But we create the wrong dynamic then. This question should be phrased as –“ How do we best communicate with Sam to solve Sam’s problem?”

There is no right or wrong answer. There is not an ABC approach, a guideline to follow, a medicine to give. My approach I am sure is no better, and perhaps may be worse, than many others. I offer some ideas really in the hope that it prompts people to look at their own practice in a different way.

There are three concepts which I think are important to note.

First what psychiatrists call “theory of mind” problems. Children with communication issues, particular those on the autistic spectrum….

[And here I’ll highlight spectrumis a poor word. It implies a range from mild to severe. This isn’t really the case. The facets of communication and behavioural difficulty are unique and probably can’t be well described by a scale]

… will struggle to see your point view; they have “one theory of mind”. They are therefore labelled as stubborn. But this is not the case, they simply do not see things in the way you do. Repeatedly explaining you need to look at their hand is not useful and probably counter-productive. They heard you the first time and believe that the request is no more valid on the 10thtime of asking than it was the first.

Secondly is understanding your bias towards control. Russell Viner, the current president of the UK Royal College of Paediatrics and Child Health says “Control is a doctors measure but a young person’s emotion”. Maldaptive behavior may be the only control that these patients have.  A child in un-familiar environment will feel they have lost control. Ask yourself not what control can I bring to the situation, but what control can I give back to the child or young person?

Third we expect to communicate in a linear fashion. But some children may have never learnt two-way communication. Parents and carers often adopt techniques to manage their children which may seem extreme/maladaptive to you. You must respect these.

There are things you can be proactive about

Repeating the child’s name can be useful. We assume that we don’t need to directly address someone once a conversation has begun, but this may not be the case for someone with communication difficulties. Although I mentioned earlier repeating the task may not be helpful, repeating the name highlights your focus on the child

Kenneth Nunn (a psychiatrist at Westmead hospital) talks on providing relevant logic. I need to do this because it helps you (not because it helps me). You need to actively link the thing that the child is distressed about to your actions. So, we’re not giving just pain killers—“Sam, we are going to give you something which will help the pain in your hand”. There needs to be the simplest clear logic behind a request which the child or young person can understand, and they may be more likely to take it.

The fear around children with communication problems is whether they will have an outburst of anger, especially if they have been known to do this previously. This sometimes paralyses decision making. Rather than efficiently dealing with the problem in hand, there is a delay to ‘prepare’; often code between staff for admitting they don’t want to deal with this type of patients, Yes, prepare for outbursts, but waiting and getting bored in a cubicle for an hour is going to make them much more likely to happen.

There are known triggers for outbursts.

Always consider: Pain, Nausea, Hunger and Sleep Deficit

Limit noise as an external stimulus. Hyperstimulation is a very real danger in the Emergency Department.

You should also consider a parent or a carer’s emotion being relevant as both a potential trigger, and a calming agent. I recommend following Yvonne Newbold’s blog. She writes openly and honestly about her experiences of looking after her son

Outbursts tend to follow a set pattern but the length of phase at each stage can be different. There is an initial

  • Trigger then..
  • Escalation “rumbling” followed by..
  • Crisis/rage
  • Recovery will eventually ensue but it’s very easy to re-ignite rage if you demand too much or change environment to quickly.

Following an outburst they may behave like nothing has happened and you may well be boiling. Who is this situation upsetting – you or the patient? The recovery phase is important, but it is also vital to consider your own emotional state. You may need a recovery phase as well.

It is also not about winning. In medicine we like to think of little victories – “I managed to get the cannula in” ; “I managed to calm down the anxious parents” ; ”I discharged the chronic abdominal pain”. It shouldn’t be seen as a victory to usucceed in managing a child with behaviour difficulties.

I have little to offer in regard the practicalities of what to do for Sam. These must be decided on a case-by-case basis. It may be that engaging the parents and a play therapist it may be possible to get a brief look at the wound to see what needs to be done (if anything). The process of doing this will be very dependant on Sam’s individual needs.

But there is a general principle at stake here:

When dealing with a patient with a communication problem– you are the one with the communication issue from the child’s point of view.

Being aware of that paradigm I think will at least give you a sporting chance of helping children and young people in the most effective way possible.

Thank you to those who made notes on the presentation! 

 

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