The Joint Royal Colleges Ambulance Liaison Committee (JRCALC) produces guidance for ambulance services across the UK. I was thrilled to be asked to contribute to this in the form of a new chapter on patients with communication difficulties. This post expands on that guidance, which was written to support pre-hospital clinicians in providing the best possible care to their patients who face challenges with communication. This may be due to a wide variety of underlying conditions, including learning disability, autism, hearing loss, dementia and dysphasia.
Communication is vital to all that we do – from the first contact with a patient, through history taking and examination, to initiating treatment and explaining procedures. We have to do our very best to get it right. This is perhaps even more important, and more difficult, in the pre-hospital field, where stress levels are high, the environment can be unpredictable and time is short. Clinicians meeting patients for the first time need to quickly assess the situation and also win trust and gain understanding.
Communication is a two-way thing. It sounds obvious, but it becomes even more important when patients find communication difficult. Not only do we have to try our best to make ourselves understood, but we also have to try our best to understand our patient.
It’s also important to remember that communication and understanding are two very different things. Someone may be able to communicate quite well but understand very little. Conversely, someone may not be able to communicate but may have a very good understanding, including things being said about or around them. Dysphasic or dysarthric patients may appear to be unable to understand when actually their difficulty is in expressing themselves.
So, how can we improve our communication?
Minimise fear and anxiety
Communicating and understanding become more challenging when there is fear and anxiety. The first step is to keep calm and reassure the patient. The specific nature of any communication difficulty needs to be recognised quickly then addressed. Patients with a learning disability may not understand what is happening so careful explanations may help. Some autistic patients may have difficulty interpreting information verbally or non-verbally, or they may have significant sensory processing difficulties which means that loud noises, bright lights and physical touch can be distressing or even painful. Deaf patients may be able to better understand if they can see the clinician’s mouth – difficult with PPE.
Make simple adjustments
Communication might be made easier with simple changes such as speaking slowly and clearly and avoiding jargon. And give time – time for your patient to respond. For some patients, including those with Down syndrome, it can take several seconds to respond – time to receive the auditory information, decode it, understand it, formulate an answer and produce that answer as the right set of noises. We’re all busy so that seven or eight seconds can feel like an age. It’s absolutely worth the wait, though.
Adapt the environment
Can we do anything to make the environment less distracting, quieter, less stimulating? Would it be better to assess the patient in familiar surroundings rather than in the ambulance? Can noisy, scary or flashing equipment be switched off, removed or covered? If the patient has to be moved can they bring something, or someone, familiar with them?
Pay attention to non-verbal communication
Would eye contact help? It often does, but for some autistic patients it can be distressing. Some people respond well to a reassuring touch (I’m a toucher and a hugger) but others find it really uncomfortable – check before extending that hand! Do we need to support our verbal communication with gesture or sign? Pictures or symbols might help to explain what we are saying, but if we don’t have any to hand then pointing to body parts or pieces of equipment can help. We absolutely need to pay attention to our non-verbal communication, body language, posture, facial expression and so on, and also watch for non-verbal cues from our patient. Those who know our patient best might be able to help with this – how would their loved one usually let someone know they were in pain, for example? Pain is often poorly assessed and managed in people with a learning disability (LeDeR – the Learning Disability Mortality Review Programme). We often hear about people having a “high pain threshold” and whilst it’s true that pain is perceived differently by different people, we can’t assume that someone does not feel pain just because they can’t verbalise it.
Play to your patient’s communication strengths
Some patients may have particular strengths and weaknesses when it comes to communication. People with Down syndrome often find it more difficult to understand and remember auditory information, due to a variety of issues including fluctuating hearing impairment and poor short term auditory memory. They may, however, find it much easier to remember and understand information presented in a visual format. Using gesture, sign language (such as Makaton), photos or symbols (such as PECS) may support the verbal information and make things much easier for both the patient and the clinician.
Family and carers can help to identify how best to communicate with the patient but consider other resources too – is there a hospital passport that can give you some clues? These are often used to list medications and past medical history, but their real beauty is in detailing likes, dislikes, behaviours associated with pain, interventions that might be difficult to tolerate, and so on. A care pathway can also give great clinical information and guide management.
Adapt your examination
Your standard examination might need to be altered a little. Give clear warnings before touching the patient, particularly if they have any visual impairment or a sensory processing disorder. Start with those parts of the examination that are less intrusive – watching and observing position, demeanour, breathing pattern, and movements can all give a huge amount of information before you even get your stethoscope out. Distraction might be useful for some patients but for others, including those who may have had previous bad experiences, it might not work. Family and carers may know how best to support your patient through the more distressing parts of the examination and any following interventions.
LeDeR has also found that early warning scores were less likely to be calculated in people with a learning disability, and they were less likely to be acted on if abnormal. There are many likely reasons behind this, including clinicians being reluctant to cause distress to their patients. Things like blood pressure or oxygen saturation measurement can be very uncomfortable, particularly for those who may not understand what is being done or who may have sensory processing difficulties. Those patients still need to be assessed and treated appropriately. If a BP or sats, or any other part of your assessment for that matter, is likely to give important information then it should be done. There may, however, need to be some thought about how best to carry it out. Explanation, communication, visual information, distraction – what will help your patient tolerate the examination?
There is a common misconception that patients with chronic health problems always have an abnormal early warning score, so what’s the point? Any score, normal or abnormal, in a previously healthy patient or not, should be taken in context with the rest of the examination. It can be helpful to know what the patient is like (behaviour, level of alertness, comfort, interaction, early warning score) when well, to help to identify how ill they may be now. Again, family and carers can give vital information about this.
Be attuned to “soft signs”
“Soft signs” can help, too. These are things that family might notice long before health professionals. They are not specific to any particular illness or disease process, but give an indication that the patient isn’t well. For example, someone might be a little paler than usual, not want to get out of bed, not want to finish their favourite meal and not want to watch their favourite TV programme. A family member would know that these things mean their loved one is not themselves, and likely to be unwell. Healthcare professionals can learn a lot by listening out for soft signs.
Beware diagnostic overshadowing
It’s really important to watch out for diagnostic overshadowing. This happens when a patient has a pre-existing diagnosis, and any new symptoms are assumed to be down to this diagnosis. For example, an autistic person might present as being quite agitated, carrying out repetitive, stereotypical movements and it might be tempting for us to assume that this is all because they have autism. However, if we do that, we may miss the fact that they are in pain or feeling unwell. Again, we have to find out more about what our patient is like when they are well, to know how ill they may be now.
All of this boils down to making reasonable adjustments, which are required by law (Equality Act 2010). We can sum it up with the TEACH mnemonic:
Time: assessing someone with communication difficulties may take more time, but that time is absolutely worth it.
Environment: pick the best environment to assess your patient in. Keep things quiet and calm, remove distractions. Keep things familiar to the patient if you can, or let them have something familiar with them.
Assume: don’t assume anything about understanding – communication aids understanding, but someone who has difficulties with communication may still have very good understanding.
Communication: how can you best communicate with your patient? How can you help them make themselves understood? Would symbols or signs help? Pictures or gesture? Writing things down?
Help: what help does your patient need? What help do you need??
None of the interventions suggested are particularly tricky or difficult, but all have the potential to make a huge difference to our patients. For those working in UK ambulance services, the JRCALC guideline chapter will hopefully help as a prompt. For others, whether pre-hospital or not, I hope this blog helps a little.