Assisted suicide: dignified death or medical murder?Posted: June 10, 2015 | |
This article was unpublished
After the recent news that a British man died at Dignitas before a tumour paralysed him, and with campaigners waiting to see whether Lord Falconer will bring back his Assisted Dying Bill in the new parliament following the general election, Ben Lazarus meets a woman who accompanied her brother to his death at Dignitas, and activists on both sides of the debate
“Henry James, on his deathbed, in a delirium, said: ‘So here it is at last, the distinguished thing.’ I wonder why. Few things are less distinguished than death, that most democratic of events and oldest of jokes that comes to each of us afresh.”
– Joseph Epstein
“I intend to live forever, or die trying.”
– Groucho Marx
Lesley Mary Close had never seen her older brother less than completely fit and in control of his world. John Close was an active man. He ran marathons, cycled long distances, jammed on the guitar with friends every week, and womanised his way through a stream of girlfriends. Surely, she thought to herself, the cramp he kept getting in his legs was no more than a small niggle.
She reassured herself. There was no need to worry. He was, after all, her fit, strong, and creative big brother. He had made it to his early fifties without her needing to worry about him. And, anyway, his doctor had prescribed something for the pain in his legs. Everything would be fine.
Or so she thought.
The pain carried on getting worse. He started walking with a limp and a variety of odd symptoms crept in.
The ailments weren’t just physical, either. He was having emotional difficulties. In a meeting at work he found himself crying for no reason. His doctor reassured him it was just stress and put him on medication for this as well.
Before long, he was having trouble speaking and swallowing – suddenly certain words defeated him and he’d occasionally choke. One time, Lesley had to perform the Heimlich manoeuvre on him. He was getting headaches and his temperature was shooting up and down.
Eventually a doctor at Milton Keynes hospital referred him to a specialist.
“These odd symptoms were put together into one grim picture of motor neurone disease in March 2001,” Lesley recalls.
“It was a shock to realise that it was regressive and incurable and he was given a diagnosis between six months to five years to live.”
By January 2003 John had a full-time carer move in with him. Around this time, Lesley visited him.
“He couldn’t talk by then but typed on a little organiser, and he said ‘I have something I want to show you’ and he showed us a BBC news story about a man called Reg Crew, who had just become the first British person whose death at Dignitas was publicised.”
At this point, Lesley had no idea what Dignitas was.
In the intervening 12 years, the Swiss organisation – which helps individuals with terminal illnesses, and severe physical and mental illnesses to take their own lives – has become much more widely known.
Indeed, today someone from Britain dies every other week at Dignitas. This is one of the reasons why Lord Falconer is planning to push through his Assisted Dying Bill in the new parliament, which would legalise assisted dying for terminally ill, mentally competent adults in Britain.
“John saw Dignitas as a way out of the final undignified phase of the disease,” Lesley says. “He didn’t want to be completely helpless. He had been a fit, strong, funny, creative man all of his adult life. He’d written lots of beautiful songs and poems. He had been married once, but he had been a serial monogamous falling in and out of love. At this point he was on his own and he just did not want to get to the stage where he was helpless.”
John’s announcement that he was planning to kill himself in Switzerland did not immediately sit well with Lesley.
“It may sound odd, but I had kind of put it out of my mind that John was going to die. Initially when he was diagnosed I was grief stricken at the thought of losing him, but because the decline was slow and I saw him at least once a week, I was able to kind of just think he would carry on changing on slowly for a very long time. When he told me about what Dignitas did, it reminded me very suddenly that yes – he is actually going to die and he was going to bring his death about sooner than maybe it would happen naturally.
“My reaction was therefore suddenly remembering that I was going to lose him whether he went to Switzerland or not. I had tears in my throat and I didn’t speak because I knew he would hear them and I didn’t want him to think that this course of action was going to upset me.
“It simply upset me the realisation this bloody illness was going to take him, one way or another.”
After the initial shock, and aware of how much her beloved brother was suffering, Lesley understood his decision.
“By this point he could no longer eat. He had a feeding tube going through the wall of his stomach. He couldn’t stand or speak or turn over in bed, or get himself out of his wheelchair.
“It seemed a perfectly natural way to come out of that appalling period of suffering. My sister also saw it as a good thing for John to look forward to. It sounds an odd thing to say. It gave him hope that he wouldn’t have to end his life very prematurely but could take it to the point where Dignitas could help him.”
However, whilst John’s two sisters understood (Lesley is the youngest of the three), not all family members were keen.
“Our mother found it much more difficult. She was 85 and was a committed Christian and she thought that if John ended his own life in this way it would preclude him from getting into heaven. She was certain she was getting into heaven and she was very sad that he wouldn’t be there with her – that was her concern more than his suffering. But she eventually came round to the idea. She realised that he didn’t have the same view of heaven and hell as her because he had no faith – and that was his right. It took a little bit of time.”
A fond farewell
Lesley’s partner, Michael – who was close to John – suggested he should attend his own wake before parting for Switzerland.
“In earlier times that would have appealed to John hugely – the humour of it would have appealed, the nonsense aspect of it,” Lesley recalls. John had always loved the Marx Brothers and Monty Python, but despite the hilarity of it, he felt he couldn’t.
“He expressed the idea that he couldn’t because he had one of the common features of motor neurone disease which is emotional labiality – where people either laugh or cry inappropriately. And with John it was always crying.
“He was worried that if he went to a party where there were people saying goodbye that he would cry and they wouldn’t understand that he was just crying as a part of his illness not because he was upset at going to Dignitas or generally distressed. So he said ‘No I can’t do that, it’ll be too much.’”
Later he changed his mind and sent out emails to everyone he knew, asking them to invite more people for a party on Saturday before he was to fly to Dignitas on Monday. The party was held at a pub in Milton Keynes near where he lived. For hours, people merrily sang John’s compositions and some of his favourite songs. “It was a fabulous afternoon,” Lesley says nostalgically. “It was a very, very moving afternoon.”
On the Sunday, John didn’t want to see anyone. He only wanted a small group with him. “He’d picked up a relationship that never really got going many years before with a local woman called Peggy – who is gorgeous, a wonderful woman and she came to the flat on the Sunday, and the three of us – my partner, me and Peggy pushed him to a supermarket nearby.
“It was a handy place to go. They had a café which is wheelchair friendly so we often went there. It wasn’t the best place in the world but it was there.
“So we walked the same old route we’d walked many times, had a cup of coffee and John played the fool. He had a pair of sunglasses and was doing the Eric Morecombe thing with them,” Lesley says laughing.
“On the walk back it started raining. He didn’t have any kind of proper wheelchair cover for his journey. None of it seemed important to him – because he knew he wouldn’t need it for very long, so we wrapped him up to keep warm and dry.
“When we got back to the flat, he had organised in his mind that he wouldn’t eat or drink very much because the last thing he wanted to be doing was emptying his bladder and bowel in an aeroplane. He had planned to go to bed early because we were getting the taxi at 6.00 in the morning to take us to the airport and he wanted to have a reasonable night’s sleep.
“But that plan went out the window. We stayed up until midnight so he could watch The Life of Brian and see all of his favourite scenes all over again. It was one of his favourite films.”
The final journey
The taxi arrived at 6.00am to take them from Milton Keynes to Luton airport. There was so much going on that morning Lesley hadn’t had time to think where she was taking her brother.
But this changed once they were in the taxi.
Solemnly, she says: “I looked out of the taxi and the sun was rising and the mist was rising up off the field and it was very beautiful and I thought how sad it was that John wouldn’t see that again.”
There was no time to dwell on this, however, as Lesley was crippled with fear of being stopped at the airport.
“John had told all of his friends and he’d told his carers and his doctor and social workers – all sorts of people had been told about what he was going to do but we hadn’t sought legal advice. I was worried somebody would have told the authorities and they would be at the airport telling us that ‘you can’t leave the country, you can’t go.’
“We hadn’t asked the question of anybody whether it was legal because I was terrified of what the answer would be. I didn’t want somebody to close the door that John had realised could be opened for him. That would have been awful. I was worried the whole way to Switzerland that somebody would have been there to stop us and send us home.”
Once in Switzerland, the founder of Dignitas, Ludwig Minelli, was there with a wheelchair taxi to greet John, Lesley and her partner Michael, Lesley and John’s sister Margaret, and Peggy.
They arrived at Dignitas by midday and began the process of going through the paperwork.
John was probed by Mr Minelli and Lesley acted as his interpreter of his grunts and facial gestures.
He was asked are you tired of life and he replied through his little organiser: “No, but I am tired of living with motor neurone disease.”
After the meeting, they were taken to a doctor’s office in a small village nearby and an elderly doctor greeted them. He, Michael and Mr Minelli manhandled John up the stairs to his top floor office (“If it hadn’t been so tragic it would have been funny.”)
John then went into the office by himself. Lesley explained to the doctor he couldn’t speak and gave him his organiser so he could communicate.
“They had a private conversation and that was the weirdest time because I don’t know how long it lasted. It can’t have been more than half an hour but it may have only been five minutes. I really don’t know,” Lesley recalls.
“It was a very weird time because I knew behind that door they were having a very one sided conversation which John could only take part in by lifting his head, smiling or frowning and trying to type something with his left hand and yet they were having a conversation about the imminent end of his life and he was so glad to be having that conversation. That felt very strange.
“After this indeterminate period of time, the doctor opened the door and asked to speak to my sister and me.”
The two women slowly walked in to the doctor’s office and sat down beside their beloved brother. The doctor asked various questions to confirm they understood John’s decision.
After ten minutes, he leaned across the desk and said: “As a doctor my first duty is to preserve life but here in Switzerland I have an extra duty and I will perform that duty for you, Mr Close. I will write the prescription that will enable you to end your life.”
Twelve years later these words still chime with Lesley.
“I have never forgotten those words and I will never forget them because they seemed so straightforward – such a humane and compassionate thing to be able to say.
“And with those words he left the office to go and write the prescription and we just sat there in silence because it was suddenly very real and we realised it would only be hours before John died.”
As Lesley sat frozen, she stared out of the window trying to process what was about to happen.
“I can still see the trees waving in the wind outside the window and remember thinking I have no idea really where I am in the world,” she says. “I know I am somewhere near Zurich but I don’t actually know where I am. And I don’t know where I am emotionally because I want this to happen to John but I don’t want to lose John. I don’t want his life to end, I will miss him so much and that is how I felt in the moment after the dose was administered. I wanted my brother back, but I wanted the fit, funny, creative, strong, healthy man back who had taught me to ride a bike and did all those amazing things when he was younger.”
Within hours John was dead having self-administered the prescribed barbiturates.
Lesley is certain John did the right thing.
“If he hadn’t done it he would have died very soon, he was so near the end. He choked every day on his saliva. One day if he had been asleep and that happened then he would have died in the night – alone and frightened. As it was, he died with the four of us holding his hand, comforting him, supporting him, and telling him how much we loved him.
“And, crucially, we all got to say goodbye. It was a really amazing, beautiful moment.”
After his death, the four went out for a meal by the harbour side and toasted John’s life – as he’d requested.
John specifically asked they eat chocolate. He loved chocolate and it was one thing his nutritionist said he could carry on eating whilst he still took food by mouth. Every day they would put a small piece in his mouth and he would let it melt on his tongue. But as his condition worsened he was denied this small pleasure. Just before he died, Lesley gave him a tiny piece to taste for the last time. “It might have choked him but at that point, it didn’t matter.”
Lesley, however, wishes he’d had the chance to die in England.
“I will never forget the kindness and compassion shown to John by Dignitas when at that time it was what he really needed,” Lesley says. “But it shouldn’t have been there, we should have been able to sit in John’s flat at the end of a beautiful day watching the sunset and listening to beautiful music and drinking tea and having the comfort of familiar things around us.
“Our mother wasn’t able to come because she was very frail, but she could have come to Milton Keynes and she could have held his hand and she would have known what it would have been like. She wouldn’t have had to wonder what it was like.
“In the same way that if John died in his sleep I would have forever wondered what his death would have been like: was he suffering? Was he lonely?
“As it is, I know that he smiled before he died and he held our hands and was glad to have had this opportunity.”
The situation today
Twelve years after John’s death, Lesley is at the forefront of the campaign for assisted dying as a patron for Dignity in Dying. This national organisation is backing Lord Falconer’s Bill as it fights for a change in law to allow terminally ill, mentally competent adults to have the option to end their own lives.
“I came back from Switzerland impatient for the law to change. I was naïve, I am still pretty naïve,” she says on the 12th anniversary of John’s death.
“I know if things change quickly they don’t necessarily change for the better, so I am prepared to wait. I have now waited 12 years, and I still want this to happen. I don’t want more people to carry on suffering… we are in a very bad place, and we would be in a much better place if we changed the law.”
This “bad place” Lesley refers to is the situation where someone travels from Britain to Dignitas every other week to die.
Many make the journey sooner than they would like to, fearful that their illnesses may reach the point where travelling becomes too difficult.
Recently it was revealed that Jeffrey Spector, 54, died at Dignitas as a precaution before his tumour paralysed him, making a trip to Dignitas impossible.
The businessman had an inoperable tumour growing near his spine and was warned this would lead to paralysis and death.
He said: “Assisted suicide is illegal in the UK so it had to be Switzerland.
“I felt the illness had crossed the red line and I was getting worse. Rather than go late, I am jumping the gun. I call it the least worst option, which is best for my family in the long term.”
The father of three said he could not seek additional treatment as he was fearful of leaving his family with the possibility of facing prosecution, if they later helped him end his life.
According to the largest poll carried out on assisted dying in April this year, 82 per cent of the public support Lord Falconer’s Bill.
The Populus survey of 5,000 people found that 44 per cent would break the current law in order to help a loved one die. The penalty for doing this is a maximum 14 year jail term.
In January, Lord Falconer’s Bill was debated extensively in the House of Lords. Peers voted in favour of the proposal by a clear majority (almost a 2:1 majority). However, the proposals ran out of time and parliament was adjourned.
He has pledged to bring the Bill back, and the British Humanist Association (BHA) is also in the process of launching a new legal appeal to the High Court, following the failure of Tony Nicklinson’s challenge in August 2012. Nicklinson, who had locked-in syndrome and communicated through an eye-blink recognition computer, starved himself after the ruling and died nine days afterwards.
Michael Charounee of the campaign group Dignity in Dying, who commissioned the poll, says the law needs to change to shine a light on the suffering of terminally ill patients.
“We think it is best to have this out in the open, because we know that over 300 terminally ill people a year in the UK are taking their own lives behind closed doors,” he says.
Reluctant to discuss methods, he says terminally ill patients buy illegal drugs from overseas, which “can leave them in a worse state or more painful state than to begin with because it is unregulated and doctors are not involved.”
His views are echoed by Pavan Dhaliwa, Director of Public Affairs and Campaigns at the BHA, who is preparing the legal case for the High Court. She is currently trying to put together a team of terminally ill individuals to bolster their argument.
“We are working with the original Nicklinson lawyers and our lawyers as well who we intervened with,” she says. “Many people have come forward saying that they want to help me since I put the call out to BHA members, but it is so sad as people say ‘I’d love to take this case, but is it going to take more than a year because I don’t know if I have that long.’”
Not a simple process
Many health experts, however, oppose changing the law.
One of the fiercest critics of the campaign for assisted suicide is the president of the British Medical Association (BMA) Baroness Ilora Finlay. A renowned expert in palliative medicine, she accuses the pro-assisted suicide campaigners of being a “dangerous distraction from us providing excellent end of life care across the whole population.”
The Baroness believes legalising assisted suicide would be the start of a slippery slope.
“I think that it also starts to categorise different people and somehow say if you are terminally ill then you ought to end your life early,” she says.
“So there is a subtle message there that actually you are not of worth, you aren’t of value. And I think there is also a danger for removing the protection from law for the vulnerable to be protected.”
The Baroness says doctors do not support a legal change.
“Doctors do not want to be assisting patient suicide. It seems completely wrong to take doctors away from providing care; they are already absolutely overwhelmed with the work they have to do.
“I don’t know where they are going to find the time, and to do this they will be taking care away from other people.”
A similar view is shared by Professor Rob George, a consultant physician in palliative care at Guy’s and St Thomas’ foundation trust and an honorary professor of palliative care at King’s College. A softly spoken man, Professor George believes assisted suicide is morally indefensible.
“The argument is about human rights essentially,” he says. “The first one is: is there such a thing as a right to die? I don’t think there is. There is a freedom to die and that is a different type of right.
“Once you involve someone else, you involve their autonomy and are impinging on that in some way. It turns it into a different category of action. Because there is a freedom to kill yourself, this doesn’t mean there is a right to get someone else to kill you.”
Professor George adds that many doctors would be “repelled” at taking life.
“Killing somebody has a moral impact on you. It is inconceivable that it doesn’t. If you look at people who kill in self-defence, or in the army, the impact on the psychology of these individuals is profound. So to involve doctors in ending other people’s lives is a violation.”
Doctor Death and ‘the double effect’
Mike Irwin is a long-time pro-assisted dying campaigner. A former UN doctor, he runs the Society for OId Age Suicide. Several years ago he was nicknamed Dr Death in the press after revealing he travelled with patients to Dignitas.
He is keen to dismiss the moral agent argument made by Professor George and claims doctors often kill people with ‘the double effect’.
In his soft, well-spoken English accent, the octogenarian explains: “A doctor can be generous in giving drugs at the end of life knowing very well that those drugs might shorten the person’s life but openly and publicly say I am giving them diamorphine to relieve their pain, their distress or whatever symptom they have.
“That is how hospices handle dying people; they are very generous with drugs. They don’t say so openly that they are shortening someone’s life.”
However, Baroness Finlay is adamant doctors helping patients to die by doubling dosages is not the case.
“It’s rubbish,” she says angrily. “What doctors do is relieve patients’ symptoms and relieve pain and they use drugs to do that and the person dies of their disease.”
Dr Andrew Ferguson, who is director of the board of Care Not Killing – a coalition of 44 religious and disabled groups who campaign against a change in the law, also dismisses this notion.
Nazi Germany: similar arguments?
In 1991, academic Joanna Mack produced and directed Selling Murder – The killing films of The Third Reich. The film examined the propaganda behind the Nazi’s euthanasia programme codenamed Aktion T4. Run by the head of Hitler’s private office, it started before war was declared and ran through until late 1944. It killed around 200,000 mentally and physically disabled people including through the use of toxic gas delivered in the asylum’s wash room and was a clear forerunner of the later, widely used, gas chambers.
“The justification for the Nazis programme was that the lives of those being killed were ‘not worthy’,” Joanna says.
“That it was a choice you would have made if in that situation and, increasingly as the programme went on, that it was what the patients themselves wanted.
“It is all too easy in any argument to bring up analogies with the Nazis – and it is often misleading.
“But my concerns about ‘voluntary’ euthanasia are based around the close similarities between the arguments that the Nazi’s gave for the mass murder of the disabled and the current arguments in favour of assisted dying.”
One of the films she discusses is Dasein ohne Leben (‘Existence without Life’). It features a ‘Professor’ giving a lecture about the living with disability. He talks about the ‘liberation’ of killing them. He then argues this is what anyone in that situation would want.
“We have here then echoes of two of the key arguments for assisted dying,” Joana says. “First that it is done to help the people concerned and second it is what you would choose in those circumstances.
“Clearly we operate today in a very different type of atmosphere to that in Nazi Germany but exactly the same kinds of arguments are made, in particular that it is better for the person involved and it is what they want.
“This then affects our priorities towards those people… It prioritises the wishes of some individuals against others – so those who want to die are seen as sensible or self-sacrificing and those who want to carry on living a burden – and begin therefore to see themselves as that.”
Michael Charounee from Dignity in Dying, however, is quick to dismiss the Nazi analogy.
“Nazi comparisons show how weak some of our opponents’ arguments are that they have to resort to such hyperbole. It doesn’t do the debate any good,” he says.
“It is an incredibly important issue we are talking about and something we need to get right and throwing this sort of criticism around isn’t getting anyone anywhere. What we are talking about is people diagnosed with diseases – cancer, motor neurone disease, Huntington’s disease – truly awful diseases which in some cases can result in horrendous deaths for people.
“What we are discussing is giving the patient the choice to determine how they end their life when they know they are dying.
“The Nazi party committed murder and war crimes and I don’t see how mentioning that in relation to a debate in 21st century about patient choice is really helping.”
Big change: realistic or unlikely?
Dr Ferguson of Care Not Killing says the opposition movement motivates him as a 65-year-old to continue working to ensure the law doesn’t change.
Professor George and Baroness Finlay are equally adamant the law won’t change, even if Lord Falconer reintroduces his Bill and the BHA launch another legal appeal.
“Responsible law-making is not about giving a small vocal minority what they want,” Baroness Finlay concludes.
Mike Irwin says that during the course of decades of campaigning he has always said change will be in five years. “It’s a rolling five years,” he adds laughing.
Michael and Pavan from Dignity in Dying and the BHA are confident change will come.
“I think you can strongly assert that in 10 years there will be an assisted dying law,” Michael says. “The majority of the public support it and it is only a matter of time before the law changes.”
Lesley agrees, too. “I have hope,” she says. “I really do. We have seen such amazing changes in the last few years. Who would have ever thought we would have gay marriage in this country?
“The barriers once seemed insurmountable and yet we got that. Perhaps this is just another area where the law can be changed to be compatible with people’s beliefs.”
Pausing for a brief moment, she adds: “I do hope so.”