Family Experiences of Vegetative and Minimally Conscious States

David and Olivia

Male

Brief outline: In 2008, at the age of 53, David’s mother had a brain haemorrhage and never regained consciousness. She was eventually diagnosed as being in a permanent vegetative state. In 2013 the Court of Protection declared that it was lawful and in her best interests to have artificial nutrition and hydration withdrawn. She died later that year.

Background: David (aged 35) is the patient’s son and Olivia (aged 36) is David’s wife. They were the main family carers after David’s mother had a brain haemorrhage. David is self-employed and Olivia works as a university researcher.

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In 2008, at the age of 53, David’s mother had a brain haemorrhage and never regained consciousness. She was kept in this state for four and a half years, with a tracheotomy in place and dependent on artificial nutrition and hydration. David’s mother was a very active, independent and dignified woman – a ‘matriarch’ at the centre of the family. David and Olivia believe that, despite receiving excellent physical care she would never have wanted to be sustained in this state. Her body became very contorted with twisted limbs and wasted muscles, and would go into spasm, and the years of seeing her in this condition were very tough on the whole family. 

David and Olivia were the main family carers after his mother’s brain haemorrhage. For them this meant “five years of constant worry and sleepless nights”. In the first year, David hoped that his mother would recover: “We tried every trick in the book to make her have eye contact, to make her communicate, but there was nothing.” When they realised the extent of the damage, they questioned why doctors had undertaken life-saving brain surgery in the first place: “Later on, we thought, you know, “Why, why when you opened her head, why did you bring her back? …. You know, how dare they leave us like this, in limbo with someone that’s vegetated, rotting away on a bed and we had to watch that.” They describe how, in the early months on a general ward, she often choked on her own phlegm, ground her teeth, sweated extensively, and was left unwashed: “we were not only grieving her, but then fighting for her dignity as a woman to be kept clean, as just a basic thing. It was disgusting”. The couple struggled to ensure that she had the best possible care, and was as comfortable as possible – despite MSRA, bed sores, pneumonia and other repeated infections and surgery to deal with her spasticity and contractures. Once David’s mother was moved to the long-term care home the quality of care improved massively and she seemed much calmer: “they were just so good with her, and respectful of us, and of her, and treated her like a lady again - not like a piece of meat”. However, they don’t believe they received appropriate information from medical professionals about his mother’s diagnosis or treatment withdrawal options: “the doctors never sat us down and gave us a definitive answer our questions”. 

In 2013 the family supported an application from the NHS Trust to the Court of Protection for a declaration that it would be lawful and in his mother’s best interests to have artificial nutrition and hydration withdrawn. They say: “We all felt we were just preserving her for us, so that we could go and see mum. …. We knew she wouldn’t want to be like that…. And we were proud of us in a way that we had the guts to get up and speak for her.” The Court authorised withdrawal, and the care home “assisted us with everything we needed to keep her dignity and keep her comfortable”. A good palliative care package was agreed and although the family was initially very anxious about withdrawal (Olivia talks of nightmares that her mother-in-law might “suffer and die in agony of starvation”), in fact they believe that she was calm the whole time and died ‘with dignity”. After her death, they felt huge relief that she was finally at peace.

David and Olivia are planning to write Advance Decisions to ensure that they are never kept alive in such a condition themselves.

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