Interpreting behaviours

This module moves on to looking at how understanding the basics about PDoC can inform the type of daily observations you make on the ward, including comments to families. Knowledge about PDoC can also help improve how you write up patient’s notes if that is part of your role (e.g. as a nurse).

In the presentation slideshow (in one of the earlier modules) Professor Derick Wade talked about what is, and is not, evidence of consciousness. A PDoC patient may, for example, ‘look’ towards an object but not ‘see’ it (in the sense of process it through their brain). The examples he gave makes it clear there is a need to be cautious in making a judgement based on a common sense understanding without background expertise.

Listen to the man below talk about his experience of visiting his brother. Do you think his brother is showing signs of being aware?

This man’s brother did turn out to be in a vegetative state – but you can see how confusing some of the behaviours can be. Our usual experience when a person smiles or cries is that they are conscious. PDoC is very challenging to our everyday way of understanding human behaviours.

It is possible to dismiss and ignore behaviours which are potential signs of consciousness (particularly in severely physically disabled patients). Great care is needed (and special assessment techniques) before deciding that a patient has no awareness at all. It is also important to repeat testing at different points in the patient’s pathway in case a patient has shifted from being entirely unconscious to being minimally conscious over time.

Equally it is possible to misinterpret behaviours as evidence of consciousness when they are not. It is very easy, for example, for staff who lack any specific PDoC training to think a patient is conscious because he seems more ‘awake’ and ‘alert’ at some points, startles at noises, cries or smiles. But all of these behaviours are compatible with having no conscious awareness. One nurse said that she was so disconcerted by her first encounter with a patient in a vegetative state and the way their eyes moved that she thought it must be a case of mistaken identity and she had been given the wrong patient to look after.

Those giving daily care to a patient get to know them very well, and are keen observers, and important sources of information for any specialist trying to assess consciousness. But some behaviours typical of vegetative patients can be deceptive. It is important to avoid over-interpreting behaviours and care needs to be taken when writing in the patient’s notes, or when talking with families.

This also has implications for the message given to families. When we interviewed patients’ relatives they would often describe how confusing it was to have the clinical experts telling them that their relative was completely unconscious, but other staff talking about how they “responded” (e.g. when staff turned on the TV, sat them up in a chair etc).

During periods of restricted visiting (because of COVID-19) this became more of a problem as families were often dependent on virtual contact. Family members might be told things by the member of staff holding the phone or iPad such as “He recognises your voice, he has perked up” or ‘He’s smiling at you”. It was hard to make sense of this, and could cause a lot of confusion and upset. It also made it harder for families to accept an expert diagnosis and for them to input into decision-making with that in mind. 

Example of everyday carer interpretations being different from expert assessments

Sometimes the impressions gained (or conveyed) by staff without specialist PDoC training need to be unpicked by systematic testing. This may happen during best interests processes in team meetings, or sometimes the gap between everyday and expert assessment is discussed in court cases. See below for an example from a court judgment.

Formal interpretations of behaviours – the role of sensory assessments

The use of formal structured assessment tools are used to interpret patients’ behaviours appropriately and to contribute to giving patients the right care and diagnosis, and to inform predictions about their future. Interpreting behaviours (and detecting any responses)  needs a lot of skill, time and attention. Assessing people with profound brain injuries may be particularly complicated due to factors such as delayed and inconsistent responses or the fact that the patient may have specific sensory, language or motor deficits.

Formal standardised evaluation also need to be performed under appropriate conditions (e.g. with particular attention given to the patient’s state of health, their positioning, the environment, and their level of arousal. They also need to be repeated over time (See The Royal College of Physicians [RCP], 2020, PDoC guidelines)

 A key task of an assessor is to ensure the patient has the maximum opportunity to display signs of consciousness. Another task is to work out whether any behaviours are purposeful/meaningful. or are simply reflexive (not under conscious control of the person).

The RCP recommend using a structured validated tool to conduct such assessments and name the following: The JFK Coma Recovery Scale – Revised (CRS-R), The Wessex Head Injury Matrix (WHIM), and The Sensory Modality Assessment and Rehabilitation Technique (SMART).

We discuss assessments a bit more in the course “Caring for PDoC patients” – but you would  need specialist hands-on training from experts to learn the skills properly, so we don’t go in to a lot of detail. However, if you’d like to learn more about assessing patients’ level of consciousness now, then look at the RCP PDoC guidelines – especially annexes 1 and 2.

We also recommend looking at the Putney Prolonged Disorder of Consciousness Toolkit [click here for access]