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Gillian - Interview 37

Age at interview: 52
Brief Outline: Gillian's father, aged 84, had an incurable disease. His motor neurone function was getting progressively worse. He needed constant care, and wanted an assisted death. In 2008 his family took him to Switzerland, where Dignitas helped him to die.
Background: Gillian, a consultant, lives with her partner. Ethnic background/nationality: White English

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Gillian’s father was aged 84 at the time of his death. He had mainly lost his motor neurone function and was getting progressively worse. He could not walk and needed constant nursing care. 

When he was 82 he decided he wanted to end his life and took an overdose of paracetamol, but recovered. He hated being a burden on his wife, who was also elderly, and who found it hard to cope, even with help. He wanted to stay at home but his wife did not want ‘living in’ help, so eventually he went into a nursing home, where he was well looked after. There were not enough staff but he did not dislike the place.  

Gillian’s father and the whole family had always believed that people have a right to end their own lives and a right to an assisted death. In 1999 one of Gillian’s brothers had died a painful death from cancer. The doctors had refused to give him enough morphine to stop the pain because they said that any more would kill him. Seeing her brother die in pain had a huge impact on Gillian, and it made her feel even more passionately about the right to an assisted death.  

In 2007 Gillian’s father asked her to write to Dignitas, the voluntary organisation based in Switzerland which helps with assisted suicide. Dignitas was founded in 1998 by Swiss lawyer, Ludwig Minelli, who runs it as a non-profit organisation. It takes advantage of Switzerland's liberal laws on assisted suicide, which suggest that a person can only be prosecuted if they are acting out of self-interest.

In June 2007 Gillian wrote to Dignitas, who wanted copies of doctors’ letters. They also wanted a letter from Gillian’s father’s GP, giving the facts of the situation. At first the organisation refused to help because Gillian’s father had not been diagnosed with a terminal illness. Her father was devastated by this news, so Gillian’s mother, Gillian and her brother, helped him write a letter to Dignitas, begging the organisation to help him end his life with dignity. This time Dignitas agreed to help. By this stage Gillian’s father was unable to feed himself.

Gillian, her brother and her mother, took her father to Switzerland by private jet. Her father was interviewed by a doctor working for Dignitas, who made sure that her father did not feel that the family had put him under any pressure to die.

Swiss law meant that the family had to stay in Switzerland for at least four days before Dignitas could assist in Gillian’s father’s death. Her father stayed in an excellent nursing home, which was spotlessly clean and where the members of staff were excellent. The family stayed in a hotel and visited the nursing home during the day, so that they could spend time as a family. They chatted about their memories, politics and other things, and enjoyed those last four days together.

After four days they all went to a flat in Zurich at 9.00am. They were met by two ‘fantastic’, ‘compassionate’ people, who filmed Gillian’s father, in the presence of the family, and who asked him if he really wanted to take his own life. He replied, “Yes, very much”. Gillian’s father then drank a special ‘potion’ and fell asleep. He died within an hour. The police were called. They looked at his passport and took some other details. The undertaker arrived and put Gillian’s father’s body in a coffin, and took him away. At 1.00pm Gillian and her mother left for the airport, feeling that they had done something good.  They felt that they could celebrate the fact that Gillian’s father had been able to end his life at a time of his choosing, listening to classical music, and with his family around him.

The family did not have a funeral. They gave power of attorney to Dignitas, who dealt with his body and cremated him. Dignitas sent the death certificate to Gillian’s brother. The death certificate did not give a cause of death. In Switzerland the death certificate provides information on where and when death took place but does not indicate the cause of death. After Gillian’s father’s death there was an autopsy, but Gillian has not seen the report. Gillian’s brother has not yet decided what to do with his father’s ashes.  

Gillian is passionate about the right to have an assisted death in the UK and thinks it should be available and paid for by the NHS. She feels proud that she and the family allowed her father to die with dignity, and she thinks that Dignitas is a fantastic organisation.

 

 

 

Gillian's father asked Dignitas to help him die in a dignified manner. He died a peaceful death...

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So if you would start by telling me the full story from the beginning, please.

My father was in a nursing home as he had mainly lost his motor neurone function, and was getting progressively worse, whilst unfortunately being of completely sound mind. And he was aged 84. And all my life my parents had brought me up to believe in the right to terminate your life when you decided to. And my father asked me, well, when he was, still lived at home, he’d asked me to get details of Dignitas, based in Switzerland, because they were the only organisation and country we knew of who would help people end their lives.

And so using Google I found out Dignitas’s address and wrote to them. And they sent us information on how to join. It’s a charity in Switzerland, so it’s all by way of donations, and you pay to be a member. And at the time that we got the details my father did nothing further.  It was then just before he went in the home that he became a member of Dignitas. And the home was a private home. It’s not how my father had wished to spend the money he’d saved to pass on to his children. Physically he was in a right state and very miserable. My brother lives in the south of France and so was having to come over every month to see my parents. He’d stay for 24 hours. My partner and I would see my father two to three times a week in the home. And he was very very unhappy. Dignitas will only help people who have a terminal illness. And unfortunately my father wasn’t actually diagnosed with motor neurone and so did not have a terminal illness, and was just getting progressively worse. So we wrote to Dignitas, well, I wrote to Dignitas. My mother, although she believes strongly in the right to terminate your life, wasn’t very cooperative at this stage. She’d been married to my father for sixty-two years.  It was very difficult for her and she wasn’t ready, and therefore why should he be ready to leave her? And although she realised intellectually this was ridiculous and his position was completely untenable, nonetheless she did sort of pursue that line of thinking for some time. So in the meantime I was the one who sort of led the way.

Wrote to Dignitas. They wrote back. They wanted copies of doctors’ letters. And I had to speak to his doctor a number of times. She had had a couple of conversations with my father and he’d made it quite plain that he believed in euthanasia. And she was not uncooperative and she was not unsympathetic. Having said that, and, and, you know, when she could, when she could help she was prompt in dealing with it, it’s just that, you know, she wouldn’t go out of her way. Which is fair enough. But, you know, seemed like a nice person.

And so this process took months and they wrote back and said, “No.” Which was just a huge blow to all of us, particularly my father, who was by this time quite desperate.  And so we wrote, and the family wrote, in fact my mother wrote most of it. And it was basically a begging letter. Their tenet is that they help people end their lives with dignity and that’s all my father was asking. And we, we basically said in the letter, “He’s 84 years old. You know, he’s going to die. Help him die well.” 

And I can’t tell you how amazing it was to get an email giving us the green light. And they’re a fantastic organisation. All the people we dealt with were fantastic. And they write and they say, you know, “You’ve got the green light. You don’t have to do it now, because you know we’ll help. Or you can come and visit and just see. Or, you know, you can come and do it.” Well, there was no question that we had to go and do it.  And what they did was give you something to drink apparently it tasted horrible, and then you fell asleep. You would then go into a coma. You would then die. And how long it took all depended on how old you were and the state of your functions and.
 
And then about this time, it was possible to basically do it in 24 hours, to arrive on Sunday and have it done Monday morning. And they have a flat where they do it. And my father needed 24-hour care. He was unable to do anything for himself. He was by that time unable to even feed himself. And then there was something in the press, because they got a lot, lot of bad press, Dignitas, and they were told that if people were going to drink, they had to be in the country for at least four days, which was a huge blow, huge blow, because, you know, it was difficult. We, we weren’t sure how we’d manage for 24 hours without help. But Dignitas came back and said that it was okay, they’d do another method. Which is basically by gassing, and as long as he was able to pull a gas mask over his face. Nicer for the patient apparently, much worse for the witnesses. So they would suggest that my mother and I did not witness it and left the room. Now I never told my mother this. I spoke to my father about it and he said, “That’s fine” he’s happy to do it that way. And then, because my father was in such a bad way, we hired a private jet to travel over to Switzerland. And we’d booked a hotel for the night. And it was all arranged for the Sunday. And the Wednesday before, they phoned and said, “No. Because they won’t let us do gas any more. You have to stay for four days.” So I rang my brother and we rearranged everything.
 
And I rang Dignitas and said, “You’ll have to find my father an old people’s home. We can’t take care of him.” And, and it was interesting, because they were surprised. They said, “Well, you know, you’re coming mob-handed. Surely you’ll be able to cope.” And I said, you know, “You don’t understand. My father is completely helpless. My mother is 83. My brother is nearly 60.” And I had just been, I’d been taken ill and had a minor operation the day before, two days before we flew out on the Friday, by general anaesthetic. So I said, you know, “This, we can’t do this.” Now in Switzerland you have to be referred to an old people’s home by a doctor. And what was going to happen was on the Sunday we were going to go straight from the airport to a doctor, a Dignitas doctor, who would then interview my father to make sure he wasn’t bonkers and that he wasn’t being pressurised by his family. Then he’d refer him to a home. So we’d take him straight to the home. He’d then stay there until the Wednesday morning. And we’d go to a hotel.  And then we’d all go to the Dignitas flat outside Zurich and Dad would drink the potion and we’d stay with him.
 
So I mean amazing people, amazing people. So we flew out on a private jet and we had champagne on the way over. And we went straight to the doctor’s. And fantastic taxi driver, with one of those wheelchair lifts, who realised what we were there for and was very nice about it. Fantastic doctor, and because my father was in a wheelchair, he went and sat in the taxi and we went into his home. And he spent about an hour with Dad. And then we went to the home, and we really just sort of, it was quite late by then, we just left him there in the care of the deputy manager. We went to the hotel, had dinner, went to bed. Next day we went back, having changed hotel, and Dad was, was a bit unhappy. He’d had a bad night’s sleep. The home was just spotless and the people were fantastic and the food was brilliant and he had a really happy three days there. And so did we. We spent every morning with him for about three hours, and then we’d go back to the hotel, have lunch, have a rest, and go back and spend two or three hours with him in the afternoon. And we, you know, we chatted about memories and things and nothing and politics and it was the first time we’d spent time together as a family for years. And it was really nice. And then the people at the nursing home realised what we were up to and, and actually approved. And they were just worried we were going to do it there. And once they knew we weren’t, they couldn’t do enough for us. Brilliant people. They cried when we left.
 
So we got a taxi and we went to this flat. And it’s in a commercial area outside Zurich. And the two people who met us were Erica and her husband. And Erica and I had corresponded with and talked to a lot. And they were the most fantastic people. And they filmed my father three times. They asked him in front of us if this is what he really wanted. He said, “Yes, very much.” And they film him, they, we then go in the back bedroom, bit of classical music on. And he drank his potion in his two-handled mug that we’ve taken with, dragged to Switzerland with us, and, and just went, “Well, that wasn’t too bad then” and put it down on the table. And then we were all, we were all sort of holding hands and holding his hand. And we were sitting there for about a minute and he, he said, and I think he was going to say, “It’s not working yet” but actually he just went, “Oh” and just fell asleep very suddenly. And we stayed with him for about five minutes and then we left the room. All sort of cried a bit and hugged each other and had another bloody cup of tea.
 
And Dad fell into a coma and actually died within an hour. And it was, it was really nice, it was really nice. And then they call the police. And you can get the nice guys or the nasty guys, depending, you know. We got the nice guys. And they interview you and just say, you know, “Did he do it of his own accord?” And, “Yes, he did. And here’s his passport.” And then they call, I don’t know, the other people, and then finally the undertaker arrives. So we got there at 9 in the morning and we left at 1 o’clock in the afternoon. And in fact we saw him in his coffin, which is not how I’ll remember him. And it was a, you know, I’ll remember him other ways. But it was the best, it was the best thing. Mum and I went back to the airport and we had a bottle of champagne on the flight back, and we felt very smug and we thought the family had done good.
 
So going, going right back.
 
Yes.
 
When your father first intimated that this was something that he would like to do, was it a surprise to you at all?
 
Not at all, not at all. We’d always talked about euthanasia as a family. We all approved of it. There was no question. And he’d been ill for quite a long time and had actually tried to commit suicide by taking paracetamol, although I had already told him not to because it wouldn’t work. But he didn’t listen to me. So it was absolutely no surprise at all.

 

Gillian felt glad that her father had been able to die at a time of his choosing, listening to...

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Yes, now you said that you and your mother felt, felt smug on the way home…

 

Yes.

 

…and had, and had champagne.

 

Mhm.

 

Did you feel, did you feel celebratory?

 

Yes, we did, absolutely, yes.


Tell me a bit more about that.

 

Well, it was, you know, we’d had a nice few days together as a family. We’d watched my brother die of cancer, and it’s, it’s the most horrible thing. But this way my father had ended his life in a, in a comparatively dignified manner, at a time of his choosing, listening to classical music, and with his family. You know, we have the right to feel smug, because, you know, a very nice occasion.


You felt that you had done good and …

 

Yes, we’d done the best for him. Yes, smug.

 

It was not difficult to avoid telling the details about her father's death because most people...

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Now what have you told other people about what happened? Are there people who you’ve chosen not to tell?

 

Most people, I’ve just said that my father died. Nearly everyone. That sort of covered it.

 

OK. Yes indeed. And presumably people knew that your father was very unwell?

 

Yes, I mean for a few weeks before, a month or so, you know, he had been getting worse and I told people. And then when we were hopeful [that her father could have an assisted death with Dignitas] I said he was, you know, really not well at all. And so no one was hugely surprised really. And so we were quite proud of ourselves for all of that as well. And then when people said about the funeral, I’d been off work ill following my minor operation, so I just told people we’d had the funeral quietly, just family. So, people don’t like to discuss death, except my family, who love it and have done it for years, and so they don’t like to ask you details at all. You know, most of them don’t look at you. They, a lot of people just ignore the fact. At work some people shuffle up and say, “Sorry to hear about your father” then rush off again. Very few of them look you in the eye and ask you questions about it. And anyway, you know, they’re not surprised if I don’t really want to talk about it. So, you know, very easy.


Was there anyone who you felt was unsympathetic or at all judgmental about what you were doing as a family?

 

Well, most people didn’t know. The only people who knew were very few of my friends. Oh, yes, well, I suppose one of my friends, who was a Roman Catholic. I sort of intimated at one time very stupidly that this was the way my father was thinking, and she was absolutely horrified.

 

On what grounds?

 

On the grounds that she clings to life and she finds it very difficult to accept that someone could so easily just stop it. Because I don’t think, well, certainly my father and I, because I am like him, you know, don’t see the necessity to cling to life. I think we have a different view of what it’s all about. And it’s definitely quality… has a lot to do with it. I think to most people it’s quantity.

 

I think it can be quite a challenging thing sort of existentially to know that some people will choose to end their life.

 

Well, because I come from that, I find it quite difficult to imagine that people can’t understand our point of view. And, you know, I find other people’s point of view so prescriptive as in many things. Which is, you know, I’m not saying, “Make it available, and you have to” but they are saying, “You can’t have it, because I don’t want it.” And, and I, I’ve always had a problem with that sort of attitude. I’m much more liberal than that.

 

People from the organisation Dignitas asked Gillian and her family whether or not they wanted a...

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And I think you told me that you decided not to have a funeral.

 

That’s right, yes. He, he, we gave power of attorney to Dignitas and they dealt with his body and cremated him. And my brother has his ashes in the south of France. And he hasn’t decided what to do with them yet. And my mother didn’t want them because, you know, ashes don’t mean anything. We’re not a hugely sentimental family.


How was, how was that decision made though? I mean was, was that something that was your father’s wish or that you made.

 

No, we made at the time as we were with Dignitas and before he’d taken the potion. We discussed it. They asked us. We sort of went, “Oh, oh, you know, oh, well.” Mum just went, you know, “Ashes.” She just went, “I don’t want them.” So my brother said, “Oh, well, I’ll have them then.”


And did, did you get the impression that they, they expect people to have funerals?

 

No, no, they have the, they ask you, you know, and it’s up to you. And they didn’t say to us that other people did one thing or another. There was no, it’s, “What do you want to do?” It’s totally about the family they have with them. Fantastic people, compassionate, helpful, dignified.

 

Gillian's father was in pain and distressed towards the end of his life. His death, by assisted...

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I want to ask you a little bit about yourself and perhaps your mother and brother, and how the bereavement process has been.

 

Well, we were mourning him when he was in the home. And since then my mother and I, and my brother when I see him, talk about him. But we don’t mourn him as such. We’re pleased. I wouldn’t actually call that mourning.


OK.

 

We’re pleased about it. I mean there’s no other way of putting it. We’re pleased he’s dead, we’re pleased he’s no longer in pain. So we don’t really mourn him.

 

Gillian believes that people living in the UK should have the right to an assisted death.

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Gillian believes that people living in the UK should have the right to an assisted death.

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Is there, is there something that you would want GPs, nurses, policy makers in the UK to, to know, to understand from your experience?


Well, yes, I’d like them to understand that some people want to end their lives, you know, there is, for whatever reason, you know, and, and it’s their reason. And that I don’t see that other people should be so judgmental, and that they shouldn’t assist them to do it. And that they make them do it in many horrible ways. My father was very lucky. He did it in a very nice way. But some people have to throw themselves off cliffs or under trains or on the tube or all sorts of dreadful, dreadful; drink, you know, drink poisons rather than some medication. I think it’s appalling. And, you know, if, and I don’t understand anyone’s moral or religious objection to it. Because to me it’s a person’s right. And, and I think people should respect that and help enable it.

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