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Rifat

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.

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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
 

Rifat’s father went into hospital with difficulties breathing – he then had a heart attack in hospital, but was resuscitated and put on life support

Rifat’s father went into hospital with difficulties breathing – he then had a heart attack in hospital, but was resuscitated and put on life support

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They gave him a – I’m not sure what kind of machine because I was not there – but they gave him a machine so that he can breathe properly. He slept for two hours and then he woke up and he wanted water. And my sister and my mum on that day was in, was staying with my father. So he wanted water, my sister went to get the water and then he just stretched his hand, that’s it, he collapsed. So obviously at that time my sister and my mum could not quite understand what is happening. So they pressed the bell, there was a bell, and someone came and saw the whole situation and then they pressed the emergency bell and a whole group of doctors came. And then they sent my mum and my sister out. I think after an hour or so one doctor came and took my sister in and said that, “He had a massive cardiac arrest. We revived his heart but because it was a long process our brain cannot survive until – if it doesn’t get oxygen for six minutes brain gets damaged. So his brain got damaged. He is in the life support at the moment.” So that life support thing, they did not ask us whether we want or not. So just saying that, “He is in the life support, we’ll be seeing what happens in seventy-two hours or so.”
 

The ventilator was taken off for Rifat’s father – but put back on after he managed to breathe for some time without it. Rifat’s family then asked for religious guidance.

The ventilator was taken off for Rifat’s father – but put back on after he managed to breathe for some time without it. Rifat’s family then asked for religious guidance.

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But one day, before I came, this was probably like ten or fifteen days before I was supposed to come back, we told the doctor that regardless of what other people are thinking, because we came to that point, take it off and we will see. They said that he will not last long, he might not last long, more than an hour because his lung does not work. I said, “Okay, still we want to see.” They took it off, and we let our relatives know that we had a conversation and it’s just to try and see what happens. 
And we kept my father in complete vigilance, we were looking at the monitor every second. Because they say that when he will be struggling his pulse will fall, his oxygen saturation will fall and we have to check it. So my sister, then me, my uncle, we are watching the monitor. And then he actually survived thirty hours. Then he started really struggling. Then we said, “Okay, put it back, because he has got life, it was not an hour, it was thirty hours.” 

So we put the life support back on. After he was put into the life support, after it was taken and then it was put back, his situation got better. He started opening eyes and if you go you’ll probably sometimes think that he’s looking at you. For a couple of days. 

And it was at that time- towards that time that I told him that “I’ll have to go on 29th April because I have my viva, but you stay like that, and it would be better if you can breathe on your own, then we’ll take you home”. And obviously he does not have any consciousness although people, you know, believe and also doctors say that they do listen to some of the things, so you just need to tell positive things all the time. So on that day he was so (pause) he was looking at me like that, as if he is listening. So I took the opportunity to tell. But then again, some of the days just sleeping, other days again breathing problem. And the doctors they just say, “You know the situation, it could be any minute, it could take months.” There is nothing new, no new news for us at all. It’s just a routine thing, we used to go, my sister used to sit there for two hours every evening and to pray. She used to recite the Quran every day. And for her that was the best medicine she was doing. And then I had to come. 

And then we had to take another family decision again, how long? I said that because it’s a very difficult decision – and in the meantime we consulted with the heads of different mosque, different religious people, all gave us almost similar kind of opinion that this is not right, this is unethical, this is against Islam, you should bring him home, you should read the Kolman that we read before – if we can before people die, and let him go. You should not keep him in a machine, when he is ready, it’s just prolonging. 
 

Although she wonders if he is staying alive long enough to hear she has got her PhD, Rifat does not think her father will make any meaningful recovery.

Although she wonders if he is staying alive long enough to hear she has got her PhD, Rifat does not think her father will make any meaningful recovery.

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And you still think your father might get better?

No, I don't think, no, [laughs] it’s just something, because he is still alive, we are just – I’m just telling you that probably he will wake up and say hello. But no, in a rational sense, I don't think he will get better. I was telling my sister that my dad is waiting for me, and my sister said to me, “No, nothing is like that, he is just there. He is just there. Because he is not- He was taken off in front of me and then all sorts of messy things came and now he is here. He is not waiting for anything. He is not waiting for your viva; he is not waiting for anything. A person can only die once. He died when I was bringing water. Now we revived, so it’s our choice, it’s human beings choice.” We don't think that he will get any better. If he got any better we could have – I think we could have seen some sign in this more than two months.
 

Rifat would like to be able to go to her father’s grave and pray – she feels her dad is already dead and wishes he had had the death he wanted.

Rifat would like to be able to go to her father’s grave and pray – she feels her dad is already dead and wishes he had had the death he wanted.

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What to feel? I mean, we’re just living life. What to feel about it? It seems like he is – he is not my dad. My dad’s memory is gone. It was the last day I talked with him, that is it. It’s just someone lying there. Day by day you cannot even recognise, he used to be a really unhealthy man, the reason why he had this stroke because his weight never got lower, but now a little person, he is not my dad. He is just – I mean, I’ll be going back home and if he is still alive I’ll be struggling to recognise him. 

So your dad died?

Yeah, he is gone. It’s just someone we have to look after or whatever it is, it’s just that. For me, I – it’s gone. Because I left and obviously I was not expecting him to be surviving. So for me, I mean, if I go back I’ll be seeing – in one way it’s a good thing that still he’s here, still we can see our dad, so that is something that people want to cling to. But—

What will change when he actually dies? I mean, there will be a funeral presumably?

My dad, one of his friends, he died in a second when he was praying. And my dad told us so many times, “This is the death I want.” And my mum cannot come into – I mean, with everybody, with nature, with God, my mum is quarrelling with everybody, why he needs to suffer like that. And obviously in religion there are lots of things, and we all say to ourselves, to my mum that everybody needs to suffer, even the best of the people in our religion, our prophet had to suffer, because suffering is a way of cleansing. So this is how people get cleansed. Dad will have wonderful life once he is not here. And we do believe all these things in a religious perspective. But then the why will always be there. And obviously it’s for everybody, nobody will say that “I want to have a death full of suffering, I want to have a death in life support”. These are all practical things. The ideal thing, everybody thinks that “I’ll be dying like that” (clicks fingers) “in a minute!” “I will have my family sitting…” You know, these are all ideal things. 
 

Rifat feels there are now no good decisions, all come with guilt and regret.

Rifat feels there are now no good decisions, all come with guilt and regret.

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Is it something that we’ll have to do? Because these are all – it’s unbelievable that a person like my father had to suffer so much, and for what reason.

What would you have liked to have happened?

Just the way my father actually gone in the hospital. In a second, in front of my mum and in front of my sister. That was it. And I just don't know why did they revive – okay, they revived the heart, fine, but they knew that his brain is gone, why did they put him in a life support? Why? He went in his own way. And then everything boils down, my mum is like, “Why did we take him to the hospital? Why did we take him to that hospital?” So this why, why, why, why, is never ending. And why he needs to suffer like that, it’s just – everybody’s dad is special to them, but my dad was really special. Because he was very happy, he was very content, very happy, never had any regret over anything. So why should we have to regret on every little decision we are making at the moment? 
 

Rifat’s extended family have different views on whether or not her father is conscious and she feels that, as a daughter, she is not in a good position to lead decisions.

Rifat’s extended family have different views on whether or not her father is conscious and she feels that, as a daughter, she is not in a good position to lead decisions.

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So some of our family members were seeing lots of hope. That yes, we have seen brother opening eyes, we have seen – but there is no look into it. We have seen – we twisted his finger and he took his hand... so you really need to come to a certain common ground to take a decision. But it is absolutely really, really odd that when immediate family members were – you know, they had this view that we should not have the life support, because it is mostly the immediate family members who do not want to take it on. Because we knew, we studied, that it will not get much better. But what to do, what to do? And then you’ll always have to listen in one way or another that, “Well, they did not even try, they did not try long enough,” you know. 

Because I think as well as cultural issue and big family issue, I think here is a gender issue. We all were sisters, daughters need to be emotional and daughters should not take the final decision. People do take – I’m not saying that no families the daughters take… But as I say that, we were very firm on the third day when we all sat down and we said that we were going to take it off. And I was the one who said that. And it was on the third day that I’m going to sign and let him go. But as time passed and… and again daughters should always consult uncles and aunties, husband, everybody, that is one thing. So we could not be firm. It is not possible. Because then- And my mum was very worried that if we take a decision then some people might say that we killed my dad. So my mum was like, “No, no...” as I told you one day I was very frustrated, I said that I don't care, I’ll just go and tell the doctor. My mum was like, “No, no, no, you should not do anything, you go back and you carry on, we will do – let other family members take the decision.”

And I do think that if similar thing happened to my husband’s father, my husband is the eldest son, and I think that if he took the decision that I don't want to keep my father like that everybody would have accepted it. 
 

All Rifat’s relatives are clear about what treatments they would refuse.

All Rifat’s relatives are clear about what treatments they would refuse.

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Has it changed how you think about your own life and your own death?

All. Everybody in our family, they all say it to each other and they all are ready to write it down. That, yes, if there is an operation, if you have an operation and you need life support for that reason, for a temporary reason, it’s okay. But if you have a stroke and if you have a massive heart attack, never, never ever put anybody in the life support. Because it drains, it drains absolutely – you even lose the capacity to mourn. You even lose the capacity to grieve, because there is no grieving left. And people, people started coming to see – and they started grieving, and then after one, two, three months, everybody left, because life needs to go along. So it’s just the immediate family, a few members, who have to go through and who have to question them every single day. Better just to go.
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