Family Experiences of Vegetative and Minimally Conscious States

Morag

Female

Brief outline: Morag’s father had a brain haemorrhage on her 16th birthday, in 1991. This came completely out of the blue: he was 45, apparently fit and healthy and a serving police officer. He was then in a vegetative state, and later (probably) a minimally conscious state until he died of pneumonia nine years later.

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On her 16th birthday, Morag’s father (aged 45) collapsed with a brain haemorrhage and was rushed to hospital. After a series of interventions, including operations on his brain, the clinical team judged further treatment futile and decided to turn off the ventilator expecting him to die. However he continued to breathe on his own.

Her father eventually showed intermittent awareness and there was a period where his family could spoon-feed him tastes of pureed food. However, he was dependent on artificial nutrition and hydration and never spoke or gestured. He would sometimes turn his head and show agitation or relaxation. Morag says: “from about a year, he absolutely knew what was going on”. Over the years he developed muscle wastage and spasticity and underwent a series of operations: “it was awful to see, from him being such a physically strong man, to withering away”. Morag’s father eventually died on pneumonia nine years after the original injury.
Morag feels that after the initial interventions in intensive care “Daddy was kind of left there to rot …The staff would shrug their shoulders and say ‘it is what it is’.” Morag and her mother fought to ensure that her father would be properly assessed and fund-raised to get him to a specialised assessment centre. She was also determined that he should be recognised as a person by the staff caring for him. She remembers her father as a very dignified individual who would have been mortified to be totally dependent on others for everything. An important message to staff was: “don’t talk over him like he’s a piece of meat or like he’s not even there or like he’s already dead - because he’s not.”

Morag describes moments of hope, influenced by media images of ‘waking up’. She recalls the first time his finger moved: “I remember us getting really excited and pressing the buzzers and calling the nurses … thinking something big was about to happen and, of course, it didn’t”. Although such moments proved to be ‘false hope’ she also says the family “just kept saying over and over and over again, ‘where there’s life, there’s hope’, and we never gave up hope really, ever”.

In some ways Morag feels she lost both her parents on the day of her father’s injury and what happened changed her attitude to life and relationships. However she also appreciates how her father was involved in family life right up until he died. For example, after a cousin’s wedding they took their bouquets into the hospital and took photographs: “so he was still part of what was going on…I’ve never ever felt like a single parent family, even though I’ve spent more than half my life without my dad in it”. Although what happened to her father was devastating, Morag says: “I believe that experiences in life, you have to just use them to make you stronger … because otherwise you just sit there and it ruins the rest of your life”. Her message to other teenagers facing this challenge is: “You absolutely will get through it … and just think that your parents are proud of you and always will be proud of you and don’t go throwing your life away because something bad has happened to you”.

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