Family Experiences of Vegetative and Minimally Conscious States



Brief outline: Over the last two months Rifat’s family have spent £20,000 in hospital bills, ventilation and medicines to keep her father alive. The family is now moving him home mostly for financial reasons. Rifat worries about her mother.

Background: Rifat is a PhD researcher at the University of York. Her father (aged 70), back in Bangladesh suffered a cardiac arrest. He remains alive nine weeks later, in a vegetative state. Rifat does not believe he will recover.

Audio & video

On 16 March 2014 Rifat’s father (aged 70), who lives in Bangladesh, collapsed with a cardiac arrest while in hospital being investigated for lung problems. His wife and another daughter were with him at the time – he had just asked for a glass of water, reached out his hand for it, and then collapsed and was taken to intensive care. He has not shown any signs of consciousness since then. The whole family went to the hospital, including Rifat who was studying for her PhD in England. The hospital was a private hospital costing the equivalent of around £500 each day, and the whole family contributed what they could. Rifat’s uncle, who has a business in the USA, said “if there is point one percent chance for his survival we will be trying our best.” But by the fourth day things looked hopeless and the family agreed to remove life support the following day. That evening a neurologist found possible evidence of consciousness: “he twisted my dad’s finger and then he moved. And he twisted his nipple and then he moved. And that was it, the whole family we all, you know, from despair we moved to absolute joy and we thought that he is coming back and he is alive. “ But at every family briefing since then the news has been the same: there is no improvement. Rifat believes that her father would not want to be kept alive in his current situation – he would hate being dependent, and he would be dismayed by the fact that his family are spending all their savings on his medical care. After 15 days they moved him to a cheaper hospital, and are planning soon to nurse him at home. He is dependent on oxygen and artificial nutrition and hydration and Rifat worries that he is suffering. She asks: “When they realise that the person’s brain is absolutely damaged, why did they put him in life support?” and she wonders whether life-support was provided because the hospital saw the opportunity to make money from the family. In a sense her father is already dead: “he is gone, I’ll be going back home and if he is still alive I’ll be struggling to recognise him. She adds that in a Muslim country there is a public discourse against the use of life support: “it’s a Muslim country, so there is also this whole discourse against life support anyway - that people should not use life support because then you are actually using a machine against Allah. Allah wants to take someone and you are actually holding on to them”
Postscript: Rifat's father died peaceful at home on Friday 6 June 2014


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