This Conversation arose organically this summer though its contents have been rumbling around for sometime… I remember visiting my mother in Bath a few years back and finding a group of ladies having tea and poring over travel brochures in animated conversation. What would it cost to hire a coach to Switzerland and where to stay? How wonderful that the spirit of adventure and travel was alive and well. Well it certainly was but not in the way I had expected.
I was soon to discover that this proposed trip to Switzerland was not a coach tour of the lakes and alpine wild flowers or a summer school in yodelling but a serious investigation into the ending of lives through assisted dying. The ladies had been inspired by Dr. Anne Turner, a local GP who, when she discovered she had PSP, a terminal neurological disease which had also caused the death of her husband, decided to end her life by going to Switzerland. Her story was made into a television film starring Julie Walters and scripted by Frank McGuinness, with whom Inside Out had a conversation (Issue No. 58, Summer 2009).
My mother has had a living will for some time and is clear that in the case of a serious accident she would not want to be resuscitated. After years of working as a volunteer with stroke patients she also has strong views on what she feels is quality of life after a stroke, not to mention dementia, Alzheimer’s, motor neurone and other progressive diseases. A few years ago she started showing an interest in what was once called the Euthanasia society and I must confess I didn’t take her very seriously. I was also put off the word ‘euthanasia’ as it conjured up images of Nazis and gas chambers.
But this conversation wasn’t going to go away. My mother is eighty-six going on eighty-seven so death and dying are foreground in her consciousness and she has daily reminders of loss, bereavement, loneliness and vulnerability as friends die, or become ill or incapacitated and in many cases lose their minds. Her reality is a world in which the population has tripled in her lifetime, the double-edged sword of medical advancements means people are living longer (the new ninety is seventy), governments face enormous unemployment, social and sustainability challenges, health systems are stretched to the limits and pensions dry up.
She wants this conversation to continue.
S: Where did you go on Wednesday July 4th, 2012?
E: I got up at four in the morning and caught the 5.30 coach to Victoria Station, which took about four and a half hours and then walked to the Queen Elizabeth hall, which is opposite the House of Commons in Westminster. The group which I am a member of, Dignity in Dying, was meeting in order to lobby Members of Parliament. We want to pass legislation which would protect carers and families of terminally ill people from prosecution in the event of an assisted death.
S: How did Dignity in Dying get started?
E: It’s been around a long time and was called the Voluntary Euthanasia Legislation Society which then changed its name in 2005. It’s about choice at the end of life as well as supporting palliative care.
S: Was there a good turn out on the day?
E: There were about four hundred of us and it was a very good day with excellent speakers, a short play and other personal stories, which was fascinating. I didn’t get home till 9.30 at night.
S: The Dignity in Dying lobby has arisen in this country because currently if a medic, carer or a member of the family assists someone who is terminally ill in dying it is classified as a murder rather than a mercy killing.
E: Yes, at the moment in this country we show more care and compassion towards our pets when they become too old or are suffering than we do old people. I feel very strongly that at a certain age we should have the right to decide when and where we die. I would like to be able to die at home in my own country and not have to travel to Switzerland. Why should we go through a dreadful illness, which is not always dignified – it’s awful for the person and awful for the family?
S: Let’s look at some of the points in the proposed legislation. It says here in the documentation that you have to be terminally ill and mentally competent to choose the time and manner of your death and that vulnerable people would not be abandoned by health care professionals – they say that assisted dying is not about the ‘right to die’ but about ‘the right when dying to die well’.
E: Yes that’s right and I personally don’t think that goes far enough. I mean terminally ill usually means that you’ve got about two years or so, so you know where you stand but what about the people who are desperately ill of any age who can’t do anything for themselves. Tony Nicklinson,* for example, who has been lobbying publicly, who had a very bad stroke and is trapped in his body and can only flick an eyelid to communicate – he could go on living for years, his wife looks after him night and day and he is begging to die…
S: And he’s mentally competent…
E: Completely. And he’s very clearly communicated his wishes. He wants to die, he physically cannot kill himself and he doesn’t want his wife prosecuted for assisting him.
S: Then the proposed legislation is quite narrow because there are all sorts of horrible illnesses where by definition you are not mentally competent. What would you do if you developed dementia or Alzheimer’s?
E: Well, Terry Pratchett, who is a member of Dignity in Dying, he’s a good example. He knows he’s got Alzheimer’s and it’s progressing slowly. He’s made his decision that if the law doesn’t change then he wants to go to Switzerland because he knows in a few years’ time he will not be able to say what he wants, so he’s preparing now.
S: I see from the literature that eighty-four percent of the population of the country agree with mercy killing and the majority of the politicians are in favour, but there is a hardcore who are against which is church backed and backed by some doctors. Is this the British solution to export the problem to Switzerland?
E: Yes, but very few go to Switzerland because it’s so expensive and complicated. So it’s a solution for the wealthy. People want to die at home in their own country. A large number of people do try and commit suicide and frequently it gets botched which is horrible for everyone concerned.
S: So people are desperate.
E: Yes and we don’t hear about them. One of the speakers told us about a really interesting experience with his mother. She was terminally ill and wanted to go to Switzerland to die and the family at first was very against it, but she fought for it and in the end they respected her wishes, so they arranged for her to go and she completely changed from being desperate and unhappy to being cheerful. She was in no hurry to go and felt relieved because she knew that if she couldn’t go on anymore the option was there for her and the last two months of her life were relaxed and happy and her personality completely changed.
S: So she felt she had a back-up position.
E: To my mind, psychologically, this is key. I would really like to know that if something happened to me, I would have that back up position and not feel trapped or dictated to by anyone except myself.
S: You are coming on to eighty-seven and you’re in reasonably good health, why are you so interested in this?
E: I’m extremely interested, almost obsessed by it in a way. I know I’m in good health and lead a full and independent life but anything could happen to me tomorrow. I could get a stroke or fall down and injure myself badly and would then have to be looked after and being looked after today is becoming a complicated business. If you can afford it, you can go into a very good care home which costs an enormous amount of money or if you don’t have the money, then you are either sent to a home or you have carers coming in, which is the minimum of help and even they cost money.
S: What about family looking after you?
E: Families can’t always look after old people these days. In my case my family don’t live in the same country. I don’t want to be a burden to them, its unfair, not everyone has the room or a granny flat so it doesn’t always work, but that’s really not the issue. I want to know that if I really don’t want to live anymore I have the right to make my own decision about my own life, provided of course that my family is in agreement. If this were to upset them it can cause complication, but if they respect my wishes then this is what I would like.
S: You already have a living will, is that not enough?
E: A living will does not guarantee that you will die with dignity – if you have an accident you would be taken to emergency and they will try and resuscitate you.
S: So you need to be very clear with your next of kin about resuscitation so they know what your opinion is. And we can’t control everything in life.
E: I know we can’t, but we can do what we can. I realize this is a sensitive area. I’m fairly black and white about it and I know a lot of people aren’t. I still think this legislation would be a first step which might help people to have a choice.
S: Why do you feel it is so important to have a dignified death?
E: It does feel very important to have a death as dignified as possible – the thought of having no control over your body with other people doing all the things that you’ve done yourself – that’s undignified, without going into details, that is humiliating, you become dependent and it’s not much fun for the family members. I know a lot of people, including myself, who don’t want their families looking after them; it’s too close. It’s better to have strangers or professionals and some of them are very good – others, well, you hear stories of abuse.
S: Is this abuse in the family home or in nursing homes?
E: Both. The care varies. Many nursing homes have had to close down because of the way vulnerable people are treated – people left in wet beds and not fed – so it’s frightening – also, if you go into hospital for a simple operation you can come out with MRSA.
S: Do you think the NHS is a good service?
E: I think they are trying hard to make it good but it’s complicated and it’s patchy. Medically I think things have advanced but the actual caring, the nursing, I think, is worse, unless you are lucky. I’ve heard some horror stories, so it varies.
S: What about palliative care since this is what we are talking about? E: Well, that is good but once you are in there you are at the end and
I’m talking about the time leading up to the end.
S: Does religion offer you any comfort or code around death and dying?
E: No. I’ve stopped going to church – I vaguely went back through the years and now I don’t go at all.
S: So you don’t see religion offering any compassion in this area? E: Absolutely none.
S: Is there anything that does offer you some comfort or compassion around death and dying?
E: Not really. You see, I’m not afraid of death. I don’t have any horrors or bad feelings about it. I feel a part of nature and I feel more close to nature than anything or anybody. I feel death is a natural process – we are born, we live and we go back into the earth. So you could say I have a primitive type of faith. I feel we are part of something evolving all the time. I used to believe in Christianity and I would have always tried to be a good person. I understand people believing in Jesus Christ and I do think he was a special prophet but that’s it.
S: So why this strong desire to manage the end of your life if death is a natural evolving process?
E: Everything is fine as it is because I feel well, but if I was ill and in pain then that would be different. I fear pain and I don’t want to be in great pain. I think it is unnecessary suffering when there are choices.
S: Do you and your friends talk about death and dying amongst yourselves?
E: Not from a religious perspective, but yes, we talk about death all the time. Not everyone likes to talk about it but there are many who do and they are worried about the future. It’s on their minds all the time – the fear of losing independence and not being in your own home and then carers coming in to your home and doing things that maybe you don’t want done. And also fears about running out of money.
S: There is a strong argument that if this legislation were passed it would open the floodgates to suicide and families murdering their elderly relatives to get their hands on money or property.
E: I suppose you are always going to have some unscrupulous people who murder their relatives but people who are desperate will try to kill themselves anyway.
S: You seem to be implying that if there was a choice this might be less likely to happen – in other words people are less likely to desperately seek a way out – if the way out was already there.
E: Yes. I don’t believe people would rush to die because that’s not human nature – we like to hold on to life. When I was up at the stroke club I was telling one of the helpers about the Dignity in Dying day and he was very interested. He had been a chemist and knew a lot of doctors and he told me they looked after people in a different way in those days. When someone was very elderly and terminally ill they would make them comfortable but not prolong their lives with antibiotics, but then the Harold Shipman case came along and everything changed.
S: The doctors got frightened of being sued and maybe the politicians are afraid too.
E: Politicians should be listening to their constituents. I wrote to mine and got a very negative letter back saying that we have a perfectly good health service and that was that. Doctors should also listen to their patients.
S: If this legislation doesn’t go through and you were terminally ill what would you do?
E: Well it depends what the illness was. If it was cancer and depending on the type of cancer it’s hard to say. It also depends on the treatment. Some of them are terrible. Some people can cope with it and others just don’t have the energy or will. Again, it’s about choice. And people take their lives in all kinds of ways like refusing to eat, which is not pleasant and terrible for families. As for Switzerland, well, why should anyone have to go to a strange country at a vast cost, when they can die at home in peace? Why not have a law which allows people to be assisted in dying well? Dignity in Dying insists that doctors are present – you have to be terminally ill and mentally competent in signing a statement to the effect you want to die. You could organize it with your family, have a farewell dinner and a glass of wine and go… in your own home. What could be better? Switzerland requires a lot of money; tickets for yourself and family and then they have to bring your body back – such a performance. And taking your own life with the possibility of it not working is awful.
S: So this is not something you would consider.
E: Yes, I would if I was desperate and in great pain. I would store up my pills. They just keep sending them to me and all I have to do is store them up. There is no control over it, so that would be easy.
S: So you could have enough pills to kill a donkey…
E: Yes, I’d give it a go with a bottle of whiskey, but I think that is awful and a really desperate way to go… and when people are terribly ill they can go bonkers and it’s hard to know if they are in pain or not.
S: Well, this is one of the arguments against what you are proposing, that you could make a decision to go, and then just as you take the hemlock you change your mind.
E: Well, then you don’t take it ….so right up to the end you are responsible for what you do.
S: So really what you want is to have the knowledge of an escape hatch.
E: That’s right, because you don’t know how you will cope with pain until you are in it. If you feel you can go on, well, good, but if I can’t bear it any more then I have this option. This is the crux of the whole thing. I just want a law that assists people suffering in desperate situations to die in peace and dignity if they choose to do so.
*Since this conversation took place, Tony Nicklinson died when he refused food.
For more information on Dignity in Dying including personal stories: www.dignityindying.org.uk