Module 5: The Multidisciplinary Team

5.4 Family & assessing consciousness

The national clinical guidelines produced by the Royal College of Physicians advise that friends and family members also play a key role in assessing and diagnosing patients. They should be asked for their observations and experience of the patient.

Families are important witnesses to a person’s responsiveness. They may not be ‘right’ in how they interpret what they observe – and strong hope or despair can “bias” what they see. Nonetheless they can provide key information about what they have seen – especially if they know the person well so they might spot signs others miss, their presence might trigger a response and they often spend a long time at the bedside undistracted by other tasks but paying close attention to their loved one.

Features of responsivity that families and care staff can look for include:

  • Does the patient show localising signs? E.g. move or look towards a specific stimulus (e.g. a sound), or follow people with their eyes as they move around the room.
  • Do they discriminate between different people? E.g. show preferential interaction with family or certain members of staff.
  • Do they make purposeful movements?
  • Do they reach out for objects, or move appropriately in respond to command?
  • Do they indicate yes/no? E.g. by gesture, eye-pointing blink etc.
  • Do they show meaningful facial expressions? E.g. smile in response to a joke and cry/grimace in response to non-somatic stimuli appropriately (e.g. hearing bad news).

Communicating with the patient’s family about the purpose and process of assessment during the course of testing is key. It can take a great deal of time and care to get this right and to communicate about the process, and the outcome, honestly, sensitively and effectively. This includes looking at the findings of assessment in the context of other factors (such as the original injury and patient’s trajectory over time) and reflecting on uncertainty as well as the realistic ‘best case scenario’ for the future given all theinformation collected so far.

Family experience of structured assessments

Most family members welcome structured assessments, are pleased to be involved in elements of them, and feel they have been an entirely positive contribution to their loved one’s care.

Family members often told us how structured assessments helped them build their own understanding, consolidate rapport with staff and trust the outcome of the assessment. If you do assessments you will probably have many examples of such positive feedback.

However, this is not always the case. Although unusual, we want to highlight a ‘cautionary tale’ here, not because it is common, but because it illustrates the need to always be aware of the best interests aspect of any assessment and the possible diversity of family responses

A sister’s experience of assessment – an unusual, but important illustration

One family member told us how upset she was when structured assessments were arranged for her sister, Cathy, after having been told she was in a permanent vegetative state and had no awareness of herself or her environment for over three decades.

Before listening to her explain her reaction can you think why she might have been disturbed by the tests being commissioned?

All assessments and investigations has to be in the best interests of the patient,  what factors do you think were considered in the commissioning of the structured assessment in this case?

This relative had intended to be as involved as possible in the testing, and try to understand it, but withdrew completely after being distressed by a casual comment made by the person conducting the structured assessment on her sister.

Take a moment to make some notes in your CPD diary, ask yourself, how might the person doing the assessment have handled this better?

Ultimately though, this family member reports that the test results turned out to be a bit reassuring, in that they confirmed the overall picture that her sister Cathy was in PVS – although she also told us she will never be completely sure that current tests can tells us everything about the human brain, and will remain haunted by the fear that Cathy may have experienced distress during her decades of being in a totally unresponsive state.