Family Experiences of Vegetative and Minimally Conscious States

Helen

Female

Brief outline: Helen is 57, she had one daughter and twin sons. In 2006, her sixteen-year old twin-sons were involved in a car crash – which left one, Christopher, in a coma. He was placed on a ventilator and underwent a craniotomy. Helen was told within days that he was very unlikely ever to recover. The consultant who operated on him commented: “we threw everything at him, including the kitchen sink, maybe we shouldn’t have”.

Background: In 2006, at the age of 16, Helen’s son, Christopher, was severely injured in a car accident. He was eventually diagnosed as being in a permanent vegetative state and died after the withdrawal of artificial nutrition and hydration in 2010.

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At first Helen was in shock, and could not believe that her son was not coming back to her. She was determined that with enough love, care and faith he would make a meaningful recovery. After difficulties with one care home and incidents of poor care Helen eventually moved her son into an excellent care home where he received very skilled and compassionate care. But in spite of some initial signs of progress, Christopher went backwards rather than progressing and over time hope faded. Christopher had convulsions, bouts of MRSA and recurrent lung and urinary tract infections. Helen does not believe her son would have wanted to live like this – in a “twilight” world where he could not communicate and where the only response he gave appeared to be reacting to pain. She says: “such a lonely existence would have been terrifying for a loving and complex individual”. Living on red alert for years was also draining and exhausting for the whole family.

When she first heard of the possibility of withdrawing Christopher’s nutrition and hydration Helen dismissed this: “My first reaction was, I’m not that sort of person”. The family was also given misinformation which profoundly distressed them all. However, her feeling was that “if nature took its course he would have died a long time ago” and eventually she made enquiries about the possibility of withdrawing his feeding tube. It was important to her that the ultimate responsibility for any decision lay with the court. She remembers being comforted by her barrister telling her: “you’re asking the question of the court. … You’re not deciding to end your son’s life, the judge and the court will make that decision”. She says: “I felt as if a burden had been lifted then”. 

In 2010 the Court of Protection declared that it was lawful and in Christopher’s best interests to have artificial nutrition and hydration withdrawn. Helen witnessed the excellent palliative care Christopher received in his last days and believes he was able to die with grace and dignity, and that he is now, finally, at peace. Helen is keen to share her experience in the hope that it may help others think about the options and do whatever is right for them and their family.

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