Family Experiences of Vegetative and Minimally Conscious States

What is the minimally conscious state?

A person who is ‘minimally conscious' shows some evidence of awareness of themselves or their environment. It is also sometimes referred to as a “low awareness state”. A person who is vegetative might smile spontaneously but a person who is minimally conscious might smile in response to her daughter entering the room. A person who is vegetative might grasp his wife’s hand reflexively, but a person who is minimally conscious could perhaps reach for the hand of someone they love. Some people with brain damage are blind, or deaf, or unable to move certain parts of their bodies, so what a minimally conscious person can do to demonstrate that they are aware of themselves and their environment will vary. 

•    If they can see, then someone who is minimally conscious is likely to be able to follow someone moving around the room with their eyes (visual tracking). 
•    If they can hear and understand, then they might be able to follow simple commands (“look towards the door”) and may be able to indicate ‘yes’ and ‘no’ in response to questions (e.g. by blinking if they have limited movement). 

There will be times when they can do these things and times when they cannot – their consciousness is likely to fluctuate. The minimally conscious state is considered ‘permanent’ after five years, meaning that it is extremely unlikely that the person will ever become fully conscious again.
Before concluding that a patient is still vegetative and not minimally conscious, it is important to rule out the possibility that their consciousness is being suppressed by sedative medication or illness. 

What is it like to be with someone emerging into minimal consciousness?

In the movies any sign of consciousness is greeted with joy by families at the bedside – and swiftly followed by the patient being able to say their first words, express love or reveal a long hidden secret.

In real life signs of consciousness come and go, and may be hard to interpret. If a patient has been in a coma for anything more than a few days or weeks any recovery is slow and uncertain, or the patient may never ‘recover’ beyond being able to have facial expression and occasional communication.

This aspect of being with a severely brain injured patient is very challenging.

Some people told us they sometimes hoped that their relatives would not regain consciousness because that would be worse for them. Vegetative patients are not aware of what is happening and so cannot suffer, but doctors all agree that the minimally conscious patient can feel pain and distress – and that was a real concern to some of the people who talked to us.
National clinical guidelines produced by the Royal College of Physicians 2013 [see ‘Resources’] advise that friends and family members play a key role in assessing and diagnosing patients. They should be asked for their observations and experience of the patient. They should be encouraged to use video-recording to record any interactions with the patient, and can be helped to use structured tools like SMART assessment. 

Features of responsivity for families and care staff to look for:

Do they 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).
(From RCP Guidelines p. 23).

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