Family Experiences of Vegetative and Minimally Conscious States

Cathy

Female

Brief outline: Cathy’s 16 year old brother, Matty, was severely brain injured when he was hit by a car. Emergency interventions and surgery meant Matty survived, but he was left in a permanent vegetative state. He was eventually allowed to die eight years later after artificial nutrition and hydration was withdrawn.

Background: Married, mother of one son, works in the Book industry.

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Cathy’s brother, Matty, a sporty, academic boy of sixteen, was knocked down by a car when walking back from a night out in 1990. Cathy, herself just 17 at the time, was called to the scene and helped as the ambulance men treated him – they told her “talk to him, love, keep him with us” – which she tried to do. Matty was resuscitated and given a craniotomy – the surgeon told her father: “I’ve saved your son’s life…. We don’t know yet whether that was the right thing to do.” She recalls her father saying: “he’s a big lad, he’ll get over a knock like this”.
 
Matty may have been minimally conscious for a short while, but developed epileptic fits and deteriorated, and entered a permanent vegetative state. However, his family were determined that he would recover. They brought him home after nine months in hospital and built a specially adapted bungalow next to the pub they owned, and looked after him there, with a dedicated team of paid carers. Cathy would sing and dance for him, and always, always talk to him – for the first four and a half years she was totally convinced that he knew her. Regardless of what professionals thought about Matty’s brain function, the family made a pact that they would always behave as if he could fully understand everything around him. Cathy thinks this was important and respectful in many ways but, in retrospect, she feels may have tricked them into not being able to face the extent of his brain injuries. She also wonders now whether the professionals thought they were just completely misguided in their “miracle mindset” as they tended to this “body shell”. 
 
It was not until Cathy went away for three months several years after the accident that, when she returned home, she saw what was going on through different eyes. She came to believe it would be better to allow her brother to die and to bury his body, rather than keep tending to it pointlessly. Eventually the whole family came to this view and they initiated court action to remove artificial nutrition and hydration. Cathy found the whole idea of “starving” her brother to death deeply disturbing, but thought it was better than keeping him in his current state. Being implicated in initiating the court action, and swearing an affidavit that she wanted her brother to die has left her feeling very guilty – “like a murderer”. Although Matty’s eventual death, after ANH was removed, seemed peaceful, she still – when interviewed sixteen years later - feels traumatised by what happened to her brother during the eight years after his accident and the whole process around his death. She is haunted by the question “what if he had some minimal awareness?” – but thinks, if he did, that would have been all the more reason to allow him to die. She just wishes he could have been helped to die sooner, and through terminal sedation, rather than having to go through the process of a court case and put him through ANH withdrawal over thirteen days.

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