Family Experiences of Vegetative and Minimally Conscious States

The injury

Serious brain injuries come without any warning to people who are completely healthy and can affect anyone of any age. Even years later the families we spoke with had vivid memories of the shock of the incident and the actions of police and emergency services. 

Some people who spoke to us had relatives who were injured by a fall (e.g. while horse-riding or skiing), an assault (e.g. a punch to the head) or a road traffic accident. Verity and Helen both have teenage sons injured in car crashes. Other relatives were hit by motor vehicles when they were walking or cycling. Another was involved in a motorbike accident.
Some family members were at the scene at the moment of the accident, or soon after; others heard the news when police came to the door or telephoned them.
Other interviewees had relatives with brain injuries resulting from cardiac arrests, strokes or illnesses. These are sometimes referred to as ‘non-traumatic’ brain injuries. Morag received a phone call from her father who was on his way home for her sixteenth birthday, but he never arrived because he had a cardiac arrest. Phil’s partner, Lewis, mentioned a headache at 7 pm, and when Phil returned at midnight he found him collapsed on the floor thrashing, with foam coming out of his mouth.
In a few cases, injuries resulted from surgery that went wrong, resulting in a lack of oxygen to the brain. Tania’s son was left in a vegetative state after brain surgery, Hannah’s relative never regained consciousness after an operation to remove cancer tumours and a similar thing happened to Angela’s husband. 
In these cases the patients were warned of risks and signed consent forms, but were not invited to discuss what their wishes would be if they survived with catastrophic brain injuries. Hannah’s relative was so concerned about the risks that he wrote a letter detailing what he would want if he survived the operation but lost the ability to make his own decisions. However, he was given no guidance about how to record his wishes so they would be legally binding. For example, his letter did not include a signature from someone who witnessed his own signature – and this meant it was not a legally binding Advance Decision and did not determine his treatment when he was left in a vegetative state after the operation (for more information on this see ‘Reflections on own end of life wishes’).

Some of those we spoke to made policy suggestions. For example, Hannah suggested that people going in for surgery should be supported to write down their wishes in an ‘Advance Decision’ so that they could ensure that if anything went wrong, their treatment wishes would be respected. This could have saved a lot of heartache. 

The way in which their relatives acquired their injuries– and the implications of such injuries – also impacts on how families react to subsequent events. People with severe acquired brain injuries have some things in common with other brain injured people – such as those with severe Alzheimer’s or children deprived of oxygen at birth. However, there are some crucial differences:
 
  • unlike the person with an early dementia diagnosis, for whom the illness develops gradually over time, the brain injury from a car crash or a heart attack happens in an instant with no time to plan in advance, or to adjust to changing circumstances. The suddenness of the injury was a key theme in people’s stories both about the original incident and events that followed.
  • unlike the new born baby with brain injury, the individual with acquired brain injury has already developed wishes, values and beliefs and may have expressed views about what they would want in this situation. Families’ knowledge of the person before they were injured and their understanding of what the person would have wanted is a key factor influencing how they feel about what happens later (for more see section ‘On-going decisions’).

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