Authors: Liz Herrieven / Editor: Charlotte Davies / Codes: MHP1, MHP2, PC3, SLO1, SLO5, SLO7 / Published: 07/05/2024

As emergency medicine clinicians you’ll be used to patients with behaviours that are really challenging. Did you know that there’s an actual definition of this?

Definition

“Behaviour can be described as challenging when it is of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion.” RCPsych, Challenging behaviour: a unified approach, 2007.

Terminology

These behaviours are not just seen in the Emergency Department (ED) but impact on all areas of life. They include things like hitting, spitting, throwing, hiding, absconding, destruction of furniture or equipment, and many more. There may be self-injurious behaviours, such as scratching of skin or banging the head against the floor or wall. We’re not talking about those who wilfully cause a disturbance, but those whose distress has become so great that they are no longer in control of their behaviour. For that reason, preferred terminology has moved away from “challenging behaviour” to “behaviours that challenge” (the behaviour presents a challenge, not the patient) or the terms I personally prefer, “behaviours of distress” or “behaviours of concern”. Talking about behaviours of distress reinforces the fact that there is distress underlying the behaviour. The behaviour is actually a form of communication and helps the patient to fulfil an unmet need. That need might relate to personal factors (likes, dislikes, previous experiences), biological factors (tiredness, pain, illness), environmental factors (noise, light, change of location) and/or social factors (bullying, crowds, access to enjoyment). Our job, as EM clinicians caring for a patient presenting with behaviours of distress, is to work out what that need is.

Meltdowns

The term “meltdown” is used more often when describing extreme behaviours of distress in autistic people. These episodes are not tantrums. The person has no control over their behaviour. Something (often, but not always, related to sensory processing) has overwhelmed their ability to cope.

“Shutdown” is another type of meltdown but, this time, the person completely withdraws into themselves. Communication shuts down (although the shutdown itself may be a form of communication of distress).

Whether the person is loud and agitated or quiet and withdrawn, they cannot be coaxed out of the meltdown or encouraged to change what is not in their control to change. Meltdown and shutdown are survival modes.

Epidemiology

Behaviours of distress are more common in patients with a learning disability and those who are neurodivergent, particularly in adolescence and early adulthood. 10-20% of adults with a learning disability show behaviours that challenge.1 Speech and language difficulties and mental health problems are other factors which make a person more likely to present in this way. There are also cultural, ethnic and religious influences on behaviour and communication, along with the impact of physical illness, drugs and alcohol.

Everyone’s ability to communicate deteriorates when they are unwell, stressed, anxious or scared.

Risk Factors for Behaviours of Distress
Moderate or severe learning disability
Autism
Communication difficulties (expressive and receptive)
Sensory impairment
Physical health problems
Mental health problems (particularly anxiety)
Age: teens and twenties
Abusive or restrictive social environment
Home environment with little or too much sensory stimulation and low engagement levels (e.g. little interaction or support from staff)
Lack of meaningful activities
Developmentally inappropriate educational environment
Disordered sleep

Causes

It’s important to remember that there are many different possible causes for behaviours of distress and someone may have more than one. Avoid falling into the trap of diagnostic overshadowing – this occurs when presenting symptoms (such as behaviours of distress) are attributed to a pre-existing diagnosis (such as autism) rather than searching for the true cause (such as an illness or injury).

It’s also worth remembering that just because someone is autistic or has a learning disability, that may not be their biggest problem. An autistic teenager still faces all the challenges that other teenagers do, such as self-esteem, peer pressure, exams, hormones, relationship problems, family stresses, etc.

Causes of Behaviours of Distress
Pain
Physical illness and symptoms of illness (inc nausea, dizziness, thirst etc)
Changes to vision or hearing
Mental illness
Fear
Anxiety
Frustration
Sensory overwhelm
Medication side-effects, medication changes, recreational drugs, alcohol
Changes to home or care-setting
Changes to daily routine
Bullying, abuse

ED attendances

Patients may arrive in the ED with active behaviours of distress, often when the situation has reached crisis point and families and carers are struggling to cope with the challenges of the behaviours and feel that safety (of either the patient or their family) is at risk. The ED is usually the last resort in these situations. Patients who have been through recent adverse life events are also more likely to attend the ED in severe distress.2 Those attending in distress are more likely to arrive by ambulance and more likely to have police involvement.3 Attendances are also more likely to be out of hours.4

Alternatively, patients may become distressed whilst in the ED and behaviours may appear during their attendance – this is even more likely for patients with sensory processing issues who may find the ED environment overwhelming (lots of people, shouting, crying, laughing, alarms, bright lights) and those who are less able to understand the processes within the ED (waiting, physical examination, observations, investigations, interventions, medications).

Patients may also present with the consequences of the behaviours – injuries, deterioration of mental health, social repercussions, or the impact on family and carers. Don’t forget safeguarding issues – the combination of complex needs, neurodivergence or learning disability along with behaviours that challenge families and increased family stresses all considerably raise the risk of non-accidental injury and other forms of abuse.

Patients with behaviours of distress are more likely to re-attend the ED, more likely to have ill-defined symptoms and more likely to have family or carers who are unsatisfied with the outcome from the ED attendance.5

Managing the behaviours

When presented with someone who is shouting, throwing, kicking, spitting and more, the ED team will often fall back on trying to de-escalate the situation by talking to the person and trying to get them to calm down. If that fails, then tools such as the security team, physical restraint or tranquilisation may be used, partly to control the behaviours of the individual, but also to minimise the disruption to the rest of the department.

For someone presenting with behaviours of distress, trying to convince them to calm down will not help. Calling for extra staff and using restraint will only increase the level of distress. Sedation will likely mean the cause of the distress is not discovered. Taking short-cuts in clinical assessment can be tempting, particularly given the time pressures in emergency departments, but risks misdiagnosis and mismanagement. Those that show frequent or particularly challenging behaviours of distress are more likely to be prescribed anti-psychotic medication, despite no underlying mental health diagnosis and despite all the potential side-effects.

We need another approach.

Low arousal approach

Behaviours are contagious. If someone is agitated and aggressive, we are more likely to become agitated and aggressive. In the same way, if we stay calm, speak in measured tones and keep our posture relaxed then there is a better chance of our patient becoming calm.

Even approaching someone who is dysregulated and not in control of their behaviour can be perceived as threatening. Threat leads to cortisol and adrenaline release.  Stay back. Stay low. Stay quiet.

Eye contact can be a powerful connection for some, but incredibly distressing for others. Don’t force anyone to look you in the eye and, if they are not initiating eye contact, follow their lead.

Think about the number of staff involved and limit them if you can. Don’t crowd the person. Give them chance to get used to a small number of people. Do what you can to control the environment – is there a quieter room? Preferably with a door? Can you dim the lights or turn off monitors? This is not the time to use bubble tubes and light projectors.

Show compassion and empathy but don’t speak more than you need to. Listen, but also allow silence. See the person, not the behaviour. Allow them some control over the situation, when they are able to take it. Give them choices rather than rules. It may take time for the person to reach a place where they can tolerate clinical assessment, so build this into your management plan.

When the behaviour has settled

Hopefully, your patient will start to feel more at ease and more able to control their behaviour. Now is the time to consider causes. Think systematically and consider illness and injury, along with mental illness and environmental or social causes. Do a full examination (including teeth, ENT, abdomen, limbs), remembering to clearly explain what you need to do and why, and consider communication supports and the help of family or carers (see our blogs on autistic spectrum conditions and learning disability for more tips). Family and carers can also help by giving useful information about recent events or symptoms. If there’s a hospital passport, read it. These can give valuable tips about how best to communicate with your patient or how best to keep them calm (take a look at this from Don’t Forget The Bubbles for more info).

Acute management

If an illness or injury is discovered, treat it. It’s particularly important to manage pain. Remember, your patient might not declare verbally that they are in pain but might show signs of pain through non-verbal communication. Conversely, some autistic patients may not show the classic non-verbal signs of pain, so it’s important to believe them when they say they are in pain.

Sometimes, an acute medical problem cannot be found. When behaviours of distress have been caused by factors that are not in the control of the ED staff, it can be pretty frustrating – for us, for your patient and for their family. A risk assessment – both for the current episode and for any recent escalating behaviours – should be considered. Does your patient need to be admitted for a place of safety? Does a social care referral need to be made? Are there safeguarding issues to be considered?

Signposting

People presenting with behaviours of distress may need a lot of support to address the causes, whilst their family or carers may need support in managing the behaviours and keeping everyone safe. Examples of support might include respite care, a carer’s assessment, sleep resources, family support and advocacy. Social care, schools/colleges, GPs and local support groups might all be sources of help, plus it’s worth signposting to these resources:

Above all, remember that all behaviour is communication. What is your patient trying to tell you?

References

  1. Bruinsma E, van den Hoofdakker BJ, Groenman AP, et al. Non-pharmacological interventions for challenging behaviours of adults with intellectual disabilities: A meta-analysis Journal of Intellectual Disability Research 2020 Aug;64(8):561-578 https://doi.org/10.1111/jir.12736
  2. Lunsky Y, Elserafi J. Life events and emergency department visits in response to crisis in individuals with intellectual disabilities. Journal of Intellectual Disability Research 2011 Jul;55(7):714-8 https://doi.org/10.1111/j.1365-2788.2011.01417.x
  3. Pillai J, Dunn K, Efron D. Parent-reported factors associated with the emergency department presentation of children and adolescents with autism spectrum disorder and/or intellectual disability with behaviours of concern: a qualitative study. Arch Dis Child 2023 Apr;108(4):264-270 https://doi.org/10.1136/archdischild-2022-325002
  4. Efron D, Cull E, Fowler J, et al. Patterns of presentation to a Children’s Hospital Emergency Department of patients with autism and/or intellectual disability with behaviours of concern. Journal of Intellectual and Developmental Disability 2022 Sep;48(1):40-45 https://doi.org/10.3109/13668250.2022.2109824
  5. Lunsky Y, Balogh R, Khodaverdian A, et al. A Comparison of Medical and Psychobehavioral Emergency Department Visits Made by Adults with Intellectual Disabilities. Emergency Medicine International 2012 Article ID 427407. https://doi.org/10.1155/2012/427407

Further Reading