Family Experiences of Vegetative and Minimally Conscious States

A ‘Permanent’ diagnosis

Severely brain injured patients should be regularly reassessed to ensure their needs are being met (e.g. if they move from a vegetative into a minimally conscious state) and that they are getting appropriate patient-centred care and treatment. 

Lynne Turner Stokes chaired the Royal College of Physicians working party on prolonged disorders of consciousness. She describes the type of assessments carried out in the initial rehabilitation setting (after the patient leaves hospital) and the need for on-going assessment.
The National Clinical guidelines produced by the Royal College of Physicians 2013 outline appropriate assessment, diagnosis, and monitoring – see Section 2 of the report, with a summary on pages 33-35. The guidelines state clearly that: 

“Clinical re-evaluation for the purposes of treatment planning should be undertaken at 6 and 12 months post injury and annually thereafter. Assessment should be undertaken by an appropriately skilled assessor.  It may be based on information gleaned from interviews with family members, carers and treating professionals.” (p. 23)

However, the family members who spoke to us (speaking mainly before the RCP guidelines were published) often had not had the chance to talk with anyone in depth about the diagnosis and prognosis for their relative for a long time. A proper assessment is particularly important for patients who may be in a permanent vegetative state – but things sometimes drift.  Assessments and updates to the family are important so that they understand the current situation, to ensure the patient’s best interests are addressed, and to avoid simply abandoning families and patients.
It is important that relatives are given the opportunity to ask questions and reflect on any change in diagnosis. This situation is not helped by confusing language – for example, the term a ‘low awareness’ state is sometimes used to mean ‘vegetative (but is seen as a ‘nicer’ word) and is sometimes used to mean ‘minimally conscious’ (meaning the patient does have some intermittent awareness - see ‘Definitions’). 

Diagnostic terms may also be used by staff who may or may not have training in how to assess consciousness and may, or may not, have a great deal of hands on experience (and hands on care which gives the opportunity to observe a patient’s reactions).

Observations from carers and family members and friends can be usefully supplemented by formal and systematic assessment using tools such as the ‘Wessex Head Injury Matrix’ (WHIM) and the ‘Sensory Modality Assessment and Rehabilitation Technique’ (SMART). These involve regular testing of the patient over time – involving a range of standardized stimulation trying to test responses to different stimuli (e.g. sound or sight). The patient may be presented with, for example, a loud sound, a picture, or a verbal instructions such as “raise your eyebrows”. Patients are scored from “no response” or “reflex response” at the lower end of awareness to “differentiating response” at level 5 at which a patient may follow instructions or use an object appropriately (e.g. scribbling with a pen).
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People who spoke to us sometimes felt they had had to struggle to get their relative’s level of consciousness properly assessed and sometimes felt their own observations of the patient were ignored.
It seems that Morag’s father was never given any other label than ‘vegetative’. He died after nine years without any official acknowledgement that he had any awareness. This was some years ago however, before the widespread recognition of the ‘the minimally conscious state’. Morag’s description of her father suggests that he might have been re-diagnosed as minimally conscious if he were alive today. We discussed this possibility with Morag, and explained how minimal consciousness was defined and assessed.
Recognising that a patient is aware is crucial to their care, it is equally important to recognize when patients have no awareness at all. Sometimes a patient in a permanent vegetative state is left without a firm diagnosis being provided for them, or communicated to their families. Assessments and updates to the family are important to ensure the patient’s best interests are addressed and families and patients are not simply abandoned and treated ‘by default’ when this is not what they would have wanted. A clear diagnosis of a permanent vegetative state can be devastating for some families, but was welcomed with relief by others because it can suggest a clear way forward.
National clinical guidelines emphasise the importance of not letting such situations continue without proper assessment (including considering family observations). The guidelines underline the value of best interests review, and the obligations on the treating clinicians to ensure their patients are treated appropriately in line with an appropriate timetable and the guidelines for clinical practice. A ‘permanent’ diagnosis cannot be given until many months or even a year has passed and depends on individual circumstances. Proper reassessment should be carried out to ensure the correct re-diagnosis is given if a patient does move into a permanent vegetative state. The diagnosis of a ‘permanent’ disorder of consciousness is discussed on pp. 10-11 of the National Clinical Guidelines produced by the Royal College of Physicians’ [See ‘Resources’] and is discussed below by Professor Lynne Turner-Stokes.

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