The right to decent death with Sir Stephen Sedley
Between 1999 and 2011 Sir Stephen sat on the Court of Appeal of England and Wales. He has also sat as an interim judge on the European Court of Human Rights and as a member of the Judicial Committee of the Privy Council. Since retiring he has been a visiting professor at Oxford University. He was formerly the President of the British Institute of Human Rights.
Stephen shared his incisive views why we need an assisted dying law in England & Wales. This was a rare opportunity to hear a clear-sighted exposition of the current legal regime and its many flaws.
A full recording of the event can be found here.
Download the script for the event here.
A black and white copy of the script can be printed here.
About the Doran Lecture
The Doran Lecture is an annual talk for My Death, My Decision given in memory of Frank Doran, a Member of Parliament and committed assisted dying advocate. During his lifetime, Frank represented the people of Aberdeen for more than 20 years, and tirelessly championed legal, political, and human rights causes – including assisted dying – before tragically dying aged 68 from cancer. In honour of his achievements and work towards a kinder, more compassionate, and inclusive society – the Doran lecture is delivered by a range of pre-eminent thinkers in favour of assisted dying reform.
For any more information or comment please contact My Death, My Decision at firstname.lastname@example.org
The Daily Mail journalist and adviser to the popular tv series Doc Martin, Dr Martin Scurr, will be reflecting on his celebrated career and discussing his personal view on the campaign for assisted dying, in conversation with our Chair, Trevor Moore.
For any more information or comment please contact My Death, My Decision at email@example.com
Arbitrary six month limit for assisted dying would weaken arguments for reform, says renowned neurosurgeon
The renowned neurosurgeon and best-selling author, Dr Henry Marsh, has warned that legal assisted dying could be less likely if a law was restricted to those with only 6 months left to live.
Speaking at an event for My Death, My Decision, inspired by his best selling book ‘Do No Harm’, Dr Marsh explored how his career as a pioneering neurosurgeon had impacted on his own relationship with death, as well as affirming his belief in the importance of patient choice. He also stressed the importance for mental wellbeing of access to nature within healthcare, something already available at many hospices.
As part of the event, Dr Marsh reflected on the modern role of a doctor and whether it was confined to merely prolonging patients’ lives, or directed instead to relieving their suffering. Identifying strongly with the latter view, Henry spoke candidly about the limitations of modern medicine and how the experiences of his friends and family had helped to shape his own view that a patient’s quality of life matters more than just its length.
Elsewhere Dr Marsh also spoke about his passionate support for assisted dying, and why he believed other doctors, especially within the palliative care community, are often afraid to voice their support for a change in the law, for fear of career repercussions.
Finally, responding to a lengthy question and answer session, Dr Marsh expressed his hope that assisted dying would become legal in the future. However, challenging the view that assisted dying should be limited only to those who are terminally ill, Dr Marsh went on to warn that a narrow and arbitrary six-month law would deprive people with many of the most serious cases of any hope.
He said, ‘I think the more demanding and serious cases are the ones with incurable suffering, people with motor-neurone disease, again early dementia, and my feeling is that we need to stick to our guns and make a rational case for it. Compromising over six months, I think actually in a sense weakens our case’… [Because opponents will say] ‘why six months? Why not five months? Why not nine months?’.
A full recording of the event can be found here.
Listen to the evidence’ on assisted dying, says renowned assisted dying expert at My Death, My Decision’s 2020 Doran Lecture.
One of Canada’s leading assisted dying doctors, Dr Stefanie Green, has urged politicians to ‘listen to the evidence’ on assisted dying, as part of the 2020 Doran Lecture, an annual lecture series hosted in memory of Frank Doran MP and by My Death, My Decision.
Her comments came after My Death, My Decision called for the Justice Secretary to issue a call for evidence (public inquiry) into assisted dying earlier in the year.
As part of the online lecture, jointly run by My Death, My Decision and Friends at the End, Dr Green, the President of Canada’s assisted dying practitioners association, explained that as a result of a successful legal case in 2016 and subsequent developments, assisted dying is now permitted in Canada for adults who are either terminally ill or incurably suffering. She expanded this to add that under Canada’s law someone is eligible to request an assisted death if they suffer from a grievous and irremediable medical condition, are in a state of irreversible decline, and are enduring intolerable suffering. She also explained that whilst Canada’s Parliament had initially restricted assisted dying to people with a ‘reasonably foreseeable death’, this criterion had proved ‘less than spectacularly clear’ and that, following another legal challenge in the Truchon case, Canada’s Government has now proposed new legislation to remove this narrow limitation.
Responding to a question about how the UK could best people protect vulnerable people if the law changed, Dr Green said ‘people often say ‘How do you make sure someone is not coerced?’ But clinicians do this everyday in their work, assessing someone’s capacity and their ability to speak freely for themselves: this is what we do’.
She later added because of legal assisted dying, Canada now has ‘a much more open discussion about end-of-life options … The need for good palliative care has come to the forefront, because of assisted dying. Because people are now talking about assisted dying, they’re now talking about palliative care in a way that the palliative care community had wished they’d been talked about earlier’.
The themes of Dr Green’s lecture clearly struck a chord and during a live question and answer session afterwards many people were eager to learn more about (i) the role patients had played in the evolution of Canada’s assisted dying law; (ii) the similarities Dr Green, the Chair of My Death, My Decision, Trevor Moore, and Chief Executive of Friends at the End, Amanda Ward, saw between the UK and Canada; and (iii) why Canada chose not to limit assisted dying to those with six months left to live.
A full recording of the event and slides can be found here.
The Doran Lecture is an annual talk given in memory of Frank Doran, a Member of Parliament and committed assisted dying advocate. During his lifetime, Frank represented the people of Aberdeen for more than 20 years, and tirelessly championed legal, political, and human rights causes – including assisted dying – before tragically dying aged 68 from cancer. In honor of his achievements and work towards a kinder, more compassionate, and inclusive society – the Doran lecture is delivered by a range of pre-eminent thinkers in favour of assisted dying reform.
Restricting assisted dying to the terminally ill would be ‘totally arbitrary’, says disabled journalist Melanie Reid
Award-winning journalist of the Times’ Spinal Column and author of The World I Fell Out Of Melanie Reid MBE, has criticised attempts to limit assisted dying for those with only six months left to live, in a filmed interview shown at an online event jointly hosted by My Death, My Decision and Friends at the End.
In an interview with My Death, My Decision’s Chair, Trevor Moore, Melanie explored how her attitudes towards assisted dying had changed following an accident ten years ago which left her a tetraplegic. Melanie explained that whilst she had always supported personal autonomy, assisted dying had become all the more important to her after her accident, because if the option existed she would be able to live a happier life; secure in the knowledge that if her pain ever became unbearable she would be able to end it.
Responding to the criticism of disability rights organisations, Melanie said that no two people experience disability in the same way and that whilst some people may not want the option of an assisted death, that does not permit organisations – even those purporting to speak on her behalf – the right to say at what point her life is liveable, endurable, or enjoyable. Adding that robust safeguards can be created to protect those who may be perceived as vulnerable, she said:
‘I have very little control in my life in the sense that I am fairly powerless. When you end up paralysed and in a wheelchair, you lose a lot of your power, authority, or agency. That power that I have, that bit of control, that knowledge that my fate will not be decided by anyone else and that I can choose the time of a good death; surely that is the one bit of agency that I am entitled to?’
Following the showing of the interview the Chair of My Death, My Decision, Trevor Moore and the Chief Executive of Friends at the End, Amanda Ward, also answered a series of questions, ranging from safeguards which could be incorporated into future legislation, whether attitudes may have shifted since 2015, and barriers to future legal reform.
The full recording of the event can be found here.
The full recording of Melanie Reid’s interview with Trevor Moore, can be found here.
The transcript of Melanie Reid’s interview with Trevor Moore can be found here.
The film is a discussion between three leaders from the Abrahamic faiths (Christianity, Judaism, and Islam) on how their followers approach assisted dying. It involved contributions from:
- Dr Taj Hargey, Director of the Muslim education centre for Oxford
- Revd Canon Rosie Harper, Rector of Great Missenden, member of the Church of England General Synod
- Rabbi Dr Jonathan Romain, Leader of the reformed synagogue in Maidenhead
- Chaired by Robert Ince, Unitarian, and president of the International Association for Religious Freedom.
There is a total disconnect between what the religious hierarchy is saying and what religious people feel. The discussion started by asking whether religious leaders reach their positions by examining their consciences first and deciding based on that, or by consulting their religious texts for answers there to share.
Rosie and Jonathan agreed that it was largely an emotional response. ‘People come to a position about something and then find a text to support it… you can make the Bible say almost anything.’, said Rosie. Taj pointed out that orthodox Muslims are literalists, who go to the texts and follow them. However, he criticised this saying ‘we have to be people of thought and thinking – critical thinking, and that means sometimes we have to go against the grain’. He gave the example of slavery to show that sometimes what was acceptable in the past is unthinkable today. Jonathan pointed out that with slavery there are religious texts that discuss it, whereas that is not the case with assisted dying. Instead, people have to hunt for more general things that might give a clue. He gave the example of ‘God gives and God takes away’, pointing out that ‘that doesn’t mean that we can’t say “thank you very much but now I’d like to gently hand it back”’. Similarly, he highlighted that whilst the Old Testament might famously say ‘there’s a time to be born, and a time to die’, it is silent on who chooses.
The conversation moved on to consider a fundamental question: ‘Is life sacred, and what does that mean in the context of assisted dying?’
For Jonathan, ‘life is sacred in the sense that it is special, it needs to be treated with respect, handled with care, the person honoured, but it doesn’t necessarily mean that every last second of your life has to be lived.’ He went on ‘life being sacred means also respecting people’s ability to say “I’ve had enough of it.” And [them] being able to let go.’
Rosie clarified in another way, ‘when you talk about ‘sacred’ you’ve got to talk about ‘real life, not the sort of shadowland that some people get trapped in for years and years.’ She cited the example of someone being kept alive in a care home for over 3 years who couldn’t speak, requiring assistance to breathe and to receive nutrition.
Continuing this thread Robert asked ‘Do you believe your life belongs to God, and that it is only for God to bring it to a close?’ He went on to question whether medicine should interfere with ‘God’s will’ in its efforts to extend life unnaturally.
For Taj, ‘life is God’s gift to us, but we are autonomous agencies… if we don’t have autonomy, how can there be a judgement?’He went on to agree with Rosie and Jonathan that a life dependent on complete care should not be considered ‘sacred’. ‘I don’t buy the argument that life is sacred indiscriminately.’
Jonathan picked up on the comparison with the benefits of medicine: ‘People say ‘you’re playing God’, actually that is a compliment! … we’re constantly playing God, giving people heart transplants and blood transfusions… sometimes it means giving them extra years, and at other times, such as assisted dying, it means allowing them to die with dignity, with peace and without pain.’
Rosie raised fundamental questions: ‘What kind of a God do you believe in? If you believe that this life is a gift from God, what sort of a God is that? Is it really a gift, or is it a gift that is conditional [in the sense that] I’m giving you your life, but hang on a minute I’m going to still be controlling all the puppet strings. … Or is it a God that says, this is a gift and then the choices that you freely make, to love me, I know are trustworthy?’ Rosie stated that she believed in this second kind of God. For her, free will is fundamental and shouldn’t be ‘whisked away from you just at the moment when most people feel that they need it most’. Jonathan strongly agreed with this.
The conversation ended with the participants being asked where they personally stand on the assisted dying issue.Rosie, who is half Swiss and has family experience of how assisted dying has been part of Swiss culture for over 60 years, explained that the Church of England hierarchy found her views very difficult to accept, but that the ‘people in the local church were just very relieved to be able to have an open conversation about it’.
Jonathan agreed that there was ‘a total disconnect between what the religious hierarchy are saying and what religious people feel.’ He clarified that he was in favour of legalising assisted dying, citing the 25 years experience in Oregon, subject to conditions of the person being mentally competent, terminally ill, and wanting it of their own free will.
Robert asked for clarification on the Oregon 6-month definition of ‘terminally ill’. Jonathan said he agreed with that, to avoid the situation of someone who was ‘going through a bad patch in their 40s making a rash or hasty decision’. It needed to be restricted to those whose life was ending anyway.Taj explained that in Orthodox Islam with very traditional Muslims there is a strong view that under no circumstances can you interfere with God’s prerogative of giving and taking life. Previously, although never strongly against assisted dying he was not a supporter. His thinking has evolved so that now he feels that if it is not medically possible for someone to have a good quality of life, and that they are in excruciating pain and terminally ill, people should have the choice. ‘The trouble with Orthodox Islam and traditional Muslims is that they don’t want to give anyone choices…. Liberal, progressive Muslims are now trying to show that there is an alternative, especially when we live in a highly medicalised society’. He went on, ‘We should have an option to decide do we want to have a good death or a bad death. That is something we should all campaign for, Jews, Christians, Muslims, Atheists, Vegetarians, Jedi’s, the whole lot.’
Robert closed the discussion by explaining the experience of his cousin who had Muscular Dystrophy (MD) from the age of 1. She had a really exciting life within the limits of her disability, but when she got to just over 70 she got to the bad stage of MD so she went to Switzerland for a medically assisted death there.
Questions and Discussion:
Q: Isn’t there a value of an unquestioning faith for the person who holds that faith?
A: For Rosie the issue was not about changing the minds of believers, but to stop them from preventing others from having their choice. For Jonathan, a meaningful faith needs to be a questioning faith. He emphasised that the film demonstrates that within each of the three religions represented in the video there is debate on this issue.
Q: If religious leaders feel threatened by assisted dying, as the film suggested, perhaps we should try to reassure them?
A: Rosie agreed that Christian leaders are generally very opposed to assisted dying. She is the only acting Church of England vicar prepared to advocate assisted dying. She told us ‘I’ve had a handwritten letter from the archbishop telling me off about it… Fortunately, being on the naughty step with Desmond Tutu ain’t that bad!” The bishops still think they are in the ’50s – the moral guardians of the country. But they are discovering that they are behind the curve on moral issues’.
Jonathan continued this line: ‘The same people who are against assisted dying are against abortion, against female priests, against gay marriage.’ Reassurance is very important. He explained that talking about safeguards helped change his mind on the issue.
Prof A C Grayling, Master of the New College of the Humanities; Vice President of Humanists UK; MDMD Patron
Following a warm introduction by MDMD Coordinator Phil Cheatle, Professor Grayling addressed the audience by asking them to consider a simple question: “What is the meaning of life?”
In seeking to answer that question, Professor Grayling suggested the audience should turn to the great secrets of philosophy, because at its core philosophy is an adventure of rational thought, which aims to dig down at the common assumptions we all make. However, Professor Grayling cautioned the audience that in seeking to find such answers, they may have to confront some great paradoxes.
One example Professor Grayling gave, to highlight this point, was the story of two old ladies on a bus:
“One day two old ladies were on a bus and one complained to the other about a problem which had been nagging on their mind. At first the other old lady said nothing. However, after a short while the old lady smiled and leaned close to her friend. ‘You must be philosophical about your problem’ she counselled … ‘you mustn’t give it another thought’”.
Professor Grayling explained that whilst initially this advice may seem the opposite of a philosophical view, in essence it captures one of the great insights known to the Stoic philosophers. This being that, when we are faced with problems we cannot change, such as ageing or mass disease, we must not fear them, but instead face them with a sense of courage and fortitude. In contrast, when we are faced with problems which can be changed, such as our fears or appetite, we must not avoid or try to hide from them, but instead command and control our own destinies. This, said Professor Grayling, was the great secret of the Stoics towards achieving a meaningful life.
Moving onto another great secret from philosophy, Professor Grayling considered the paradox of assisted dying: namely that facing death throughout our lives, is very often the reason our lives are better. Again, Professor Grayling pointed out, that whilst at first dying may seem the antithesis of a happy and meaningful life, this is only because dying is a concept we are non stoic about.
Death he argued, was something society viewed with great anxiety and fear. Death was something everyone hoped to postpone or ignore. Yet, Professor Grayling asked the audience to consider why we are scared of death.
“I’ll admit when I was a young man, I used to be a bit of a hypochondriac. You know the sort, I’d check my pulse when I thought no-one was looking and when my heart occasionally skipped a beat, I’d think oh God I’m going to die. Yet, I realised as time went on the reason I wanted to cling onto life, other than my natural desire to stay alive, wasn’t death itself; dying might be unpleasant but death itself is no different from being unborn. I wanted to stay alive, because I was scared of not being able to do all the things I’d wanted to do.”
Professor Grayling told the room that death itself wasn’t the reason society fears dying, it is the sense of not having completed everything one wishes which scares us. However, Professor Grayling suggested this doesn’t mean society should simply try to keep people alive for the maximum amount of time possible, since time isn’t the key to a meaningful life; experience is.
“Suppose you go to Paris for the weekend with someone you really like and whilst you’re there, it seems as though you’re there forever. Yet, when you’re home again *snaps fingers* it’s gone like a flash. Or imagine, a person who does exactly the same thing, at exactly the same time, every single day of his life. How many days has that person lived? One! Time isn’t really what matters and gives our lives meaning, but experience”.
Reflecting on secrets which can be learnt from philosophy, Professor Grayling argued one of the great lessons we must all learn is that a healthy attitude to death can be liberating. He explained that if someone is not afraid to die, if they do not dedicate the time and anxieties necessary to avoid it, if they face death with a sense of fortitude and courage, then death can be a form of freedom. Once someone stops fearing death, they are capable of living a life with the fullness of experience every life deserves, because they know it is an inevitability and they cannot change it.
Professor Grayling also explained another secret from philosophy, often unconsidered. Rather than an enemy to be feared, death can be the “last, greatest, securest and friendliest” act of freedom. Indeed, for someone who lives with extreme pain, suffering or intolerable existence, choosing to die might be a final act of autonomous expression. Thus, to a great extent death can be liberating, since it means if someone’s quality of existence were ever to become utterly intolerable anyone can autonomously choose to escape it.
Following this, Professor Grayling moved onto the other theme of his talk. The concept of autonomy. Professor Grayling explained that the notion of autonomy is the idea of having ultimate ownership over your own life. It is the notion that it is the person who is living a life who can best understand and make choices for it, because no-one else is capable of understanding what it means to be that person.
Professor Grayling further explained that the notion of autonomy is central to what it means to be a person. He explained that it is from our rights to autonomy that our responsibilities to others stem. For example, because each person is free to act as they wish within society, autonomy justifies the imposition of responsibilities upon a person for their actions. For example, whilst we are free to love and cherish the friends we have, we also correspondingly owe obligations to those people, such as an obligation to offer help to friends in need. Likewise, if autonomy is the reason we can have responsibilities, it must also mean each person is the final arbitrator on when, how and for how long they live their life.
Accordingly, Professor Grayling argued that when we talk about a right to life, we are not merely talking about our right to near existence but a right to autonomy.
“Suppose you were to live under a law which meant you could not escape your suffering. Suppose there was a law which said no matter what your state of health or the extent to which some devastating illness reached, you’re not allowed to die. Every effort must be made to keep you alive, no matter how much you’re suffering. That would be a terrifying prospect. You’d be a prisoner of life even in its worse dimension. Or consider if I locked you in a tiny cage and fed you bread and water in the dark. You’d be alive. But I couldn’t claim that I was respecting your right to life.”
Professor Grayling closed his talk by reflecting on the notion of autonomy and its importance to the right to die. He pointed out that for years anyone who wished to die has been dismissed as mad or suffering from a passing phase. He pointed out that those who ask for death are commonly thought of as only needing to get through a short phase before being “fine” once again. Yet, Professor Grayling reflected that whilst in some cases this might be true, it doesn’t seem right when we don’t know what each moment of existence means for a person, to make such a choice about continued existence for them. After all, “a right to life, would seem to be a right to a certain minimum quality of life. Once that minimum quality is gone, it would seem to be that it must trigger whatever someone has left. A right to die.”
Questions and Discussion:
Q: How can we convince those who disagree with our point of view on assisted dying to change their minds?
A: “That really is a great question and partly why I am deeply honoured to be a patron of My Death, My Decision. I think this organisation has a real opportunity to start afresh with our thinking and arguments about assisted dying. I’ve been a patron of Dignity in Dying (what was the Voluntary Euthanasia Society) for over 20 years and in that time, they’ve tried again and again to pass a bill through parliament for physician assisted suicide for the terminally ill. Although early on it wasn’t just for the terminally ill but also for those in intolerable states. And they have temporised and weakened their position, changed their ask and eventually got down to only saying in the last 6 months of someone’s life, if someone is irrevocably ill, could we let a doctor help that person? … But they’ve been pushed back again and again.
It is always a mistake to aim for 50, hoping that you’re going to get 25 and ending up with 0. Instead you should aim for 100 and make your argument as robustly as you can.
There comes a point in any great conversation society has with itself when a tipping point is reached. We know that we have a majority of people on our side. But we must keep making the argument because suddenly there will be a glimmer of light and then there will be a cascade of action. Once you fight for the big issues and keep on fighting, with courage and persistence, it will come.”
Q: It isn’t all rational – people are influenced by unconscious attitudes, behaviours, emotions. How can we take more account of that?
A: Bringing up children is about teaching them to control their emotions, controlling the unhelpful such as greed and anger, and channelling the more positive emotions in fruitful directions. We can appeal to persuading people through stories and narratives.
Q: Most people in this room are older, how should we attract more younger supporters?
A: Use the difficulty… We are the experts… We’ve seen people go through the end of life. We from our generation want to speak out. We want to say we are outraged…
Q: Perhaps we should be shouting “OUTRAGEOUS! Poor old woman, old man kept alive against their wishes. Kept in agony for 9 months by doctors.”?
A: A very good point… The case of Omid is a perfect example. But we shouldn’t blame doctors (we might need them one day). Doctors are there to cure, to care, or to palliate and help. Many doctors who deal with terminally ill patients do help them to slip away comfortably.
In many cases the main culprits are the families of people, who don’t want their elderly relative to die. This is one reason why we need advance decisions – to clearly explain our wishes.
Richy Thompson | Director of Public Affairs and Policy, Humanists UK
Slides are available here.
Heather Williams | Friends at the End (FATE)
Slides are available here.
The audio is available here.
Heather Williams talk starts at 45 mins
Q&A start at 1hr 04mins
After an official warm welcome to everyone by the Coordinator of MDMD, Phil Cheatle, the talks were opened by Richy Thompson, the Director of Public Affairs and Policy at Humanists UK (HUK) which is a national, non-religious organization with 65,000 members.
Richy, who has been working for HUK for 7 years is their lead on assisted dying and was keen to talk to MDMD members as we share an almost identical policy on assisted dying with both HUK and the Humanists Society Scotland. He outlined the recent history of parliamentary and judicial events related to assisted dying and how they are closely intertwined.
HUK has broad interests including marriage, abortion and assisted dying and all of these subjects are treated as conscience issues by parliament with a free vote by MPs. HUK historically has been involved in campaigning, working with politicians, the media and lawyers, notably barrister QC Caoilfhionn Gallagher, and medical ethicists who provide witness statements for some cases. The patient Terry Pratchett famously did his own witness statement. HUK primarily focus on England and Wales, they feel that Northern Ireland is a more socially conservative society which has less debate on assisted dying.
Most of the legal work is related to Article 8 of the European Convention on Human Rights which states that citizens have a right to respect of their private and family life with no interference by public authorities except in maintaining the laws of the land and protecting society, including morals and the freedom of others.
In the Human Rights Act (1998) it is sections 6(1) and section 4 which are highly relevant, the former forbidding public authorities from breaking a Convention right and section 4 dealing with ‘declarations of incompatibility’ by the court where a provision of primary legislation is incompatible with a Convention right. There is no compulsion to be compatible but a ‘declaration of incompatibility ‘ is treated as a very serious matter and referred back to parliament, such as the prisoners’ right to vote.
HUK believe that the illegality of assisted dying is out of step with human rights and the Supreme Court should make a ‘declaration of incompatibility’ regarding it.
Richy then went on to outline the history of some legal cases, the first being that of Diane Pretty who suffered from motor neurone disease and was the first human rights case to be heard here in UK. In 2002 it went before the House of Lords, Britain’s highest court at the time, where they decided she had no claim, that Article 8(1) was not engaged. However the European Court of human rights subsequently ruled that Article 8(1) was engaged but 8(2) protecting others was too. They looked at law in the UK and decided that the government provides flexibility with lack of prosecutions for assisting suicide and that the UK courts can delve deeper into other cases and may come to different conclusions.
The second case mentioned was that of Debbie Purdy who suffered from multiple sclerosis and her case was to do with the lack of clarity regarding the discretion of the public prosecutor, accusing this lack of clarity as being unlawful. In 2009 she won the House of Lords case forcing the director of public prosecutions at the time, Sir Keir Starmer, to publish a document in 2010 outlining when prosecutions will happen. This listed 16 factors in favour of prosecution and 6 against including when there is a voluntary, clear, settled, informed, decision and compassion is the overriding motivation for assistance. However the assister will still be subject to police questioning and it is best to hand yourself in and be cooperative.
The next case outlined was the Tony and Jane Nicklinson and Paul Lamb case. The former suffered from locked in syndrome and the latter had a car accident leaving him physically disabled from the neck down and suffering severe pain. They challenged the fact that they were not allowed assistance to die and the uncertainty about prosecutions following their death. Tony lost his case at the high court in 2012 and died two weeks later from pneumonia after refusing food and water. Jane took up the case arguing that family life had been disrupted by not allowing assisted dying. Paul Lamb joined the case as he wanted the option of an assisted death in the future when his pain was predicted to get worse. He wanted the reassurance of having an assisted death when the time is right; in the Netherlands many don’t ultimately use this right. In 2014 Jane and Paul lost their case. Nine judges heard the case (could be 3-13 judges, so deemed an important case). Two judges voted in their favour of the illegality of assisted dying being against article 8, four voted against but the three others decided that this was a high profile ethical debate which parliament should get a chance to debate and vote on. Apparently this was a first and HUK believe that a ‘declaration of incompatibility’ should have happened then.
A similar situation arose in 2017 in the Belfast court of appeal regarding the Belfast high court’s decision to make abortion legal following sexual crime. The court of appeal overturned it and said the Northern Ireland assembly should look at it.
Richy then outlined the attempts to legalise assisted dying through parliament by Lord Joffe (2003-2006, tried three times), Lord Falconer and Rob Marris MP. In 2005 the House of Lords set up a select committee who published a report on the subject and Baroness Finlay was amongst others on the committee who were adamantly against a change in the law so eventually Lord Joffe’s last Bill ran out of parliamentary time.
In 2010 Dignity in Dying commissioned a report which was published in 2012 which recommended a change in the law for the terminally ill.
Between 2013-2014 Lord Falconer tried three times to get a bill through parliament and it got to the second reading but ran out of time again and wasn’t helped by the Supreme court’s decision on the Nicklinson case in 2014.
In 2015 Rob Marris was the first to bring forward a private members bill in the House of Commons since 1997. It was broadly based on Lord Falconer’s Bill but was defeated by 330 votes to 118, however many conservative MPs were in favour of assisted dying.
There is no ongoing parliamentary Bill so attention has been focussed on the Conway and Omid cases, the former has motor neurone disease and the latter multiple system atrophy. Parliament failed, so back to court! The Conway case has the support of Dignity in Dying because it fulfils the 6 month limit of life. Omid has the support of MDMD amongst others but his case is lagging behind the Conway case which initially had its first application for the case to be heard rejected. This was overturned by the court of appeal but then went on to lose in the High court with no permission for appeal. However an appeal has been made to the Court of appeal where it is due to have a full hearing in a few months’ time. HUK believe that judgement of only the higher Supreme Court is important in regard to getting the law changed and expect more progress for Conway than the Nicklinson case because the Marris Bill was rejected so it is up to the Courts to make a decision.
Omid’s case is due for a more comprehensive two day hearing to decide if a heavy approach assessment of evidence by Courts or parliament is relevant.
So, where now? We need a change of make up of MPs unless a ‘declaration of incompatibility’ comes from the Courts, most likely in the Supreme Court.
We hope that movement in other jurisdictions such as Canada, Victoria in Australia and even Guernsey will all help and by working through the All Party Parliamentary Group on choice at the end of life we can build up a majority of support from MPs.
At the moment we share Dignity in Dying’s belief that support of the legal cases is the most important thing that we can do at this time.
Question: My daughter was working for ‘Act for the Act’ to protect the Human Rights Act (1998). What will happen if the government repeals the Human Rights Act after Brexit?
Answer: HUK believe that criticism of the Human Rights Act is not fair and there is no proposal to pull out of the Human Rights Convention so the Human Rights Law should not be weakened.
The second guest speaker was Heather Williams from ‘Friends at the End’ (FATE) which was founded in Scotland in 2000 by amongst others Dr Libby Wilson, who had also set up the first family planning clinics for unmarried women in London and Glasgow.
FATE’s objectives are basically the same as MDMD’s, plus they work towards ensuring as good a death as possible at present. Introducing laws about assisted dying is a devolved issue to be decided by the Scottish parliament. This is made no easier by the fact that there is no Suicide Act in Scotland and no guidelines from the Lord Advocate about the outcome for an assister in a suicide case.
There have been two recent cases, the first Ian Gordon from Troon who helped his wife to die and was charged with culpable homicide and received a 3.5 years prison sentence. On appeal they admonished him and quashed the sentence. In January of this year Suzanne Wilson was allowed to go free after helping her husband to die. This was decided by the Sheriff.
In Scotland the justice system is not perfect, not always fair and a bit confusing regarding assisted dying, it is ‘a bit of a mess’. Equality of Human Rights are meant to be enshrined into the set up of legislation in Scotland but the Scottish parliament are not meeting their duties as regards Articles 8 and 14.
In 2010 Margo MacDonald’s End of Life Assistance Bill failed to pass stage one by 85 votes to 16. She introduced another Assisted Suicide (Scotland) Bill in 2013 but died in 2014. Patrick Harvie took it up but it also failed by 82 votes to 36. This was asking for a 3 stage process: preliminary declaration , first request, second request and followed by ingestion of a lethal drug.
There was a new make up of the Scottish parliament in 2016 and FATE is the secretariat for a new cross party group on assisted dying with George Adam SNP Paisley, as its head. His wife has multiple sclerosis. In Scotland Labour are generally anti and many conservatives are supportive.
- Advance Directives; in 2000 they tried giving them legal status but it was deemed too contentious an issue.
- Educating MSPs and the public. Over 50 MSPs are supportive and they are trying to get information about the SNP’s standing on assisted dying.
75% of Scots are supportive but most are passive supporters with not much debate and the Scots tend to avoid talking about death.
FATE are organizing a ‘Good Death Week’ to increase awareness and they are present at Freshers’ Fayres etc.
- Support for Omid’s case, supplying witnesses and supporting Gordon Ross’ case.
- A Scottish government consultation on a Mental Capacity Act, including Advance Directives. There is a need for a central registry for them and a push by the government to get people to write them.
- Training for doctors and associated professionals.
- Local groups in Edinburgh, Fife, Tayside and Glasgow to get people talking and put pressure on politicians.
FATE believes that it is untenable to leave it to the Court and Sheriffs to decide individual cases. They believe that another private member’s Bill is most likely to succeed in Scotland, with public consultations. Unfortunately people against are well organized, especially religious groups. FATE feels that all they can do is prepare the ground for the next private member’s Bill.
Question: Do your volunteers supply support?
Answer: ‘Befriend at the End’ offers telephone and face to face discussions to discuss options and choices.
Question: Is there a Voluntary Euthanasia Society in Scotland?
Answer: Gordon Wyllie was the convenor and it does still exist but it is not very active.
Question: What about Exit International?
Answer: We believe they hold workshops on methods people may use to end their lives. We don’t support that route. Instead we campaign for a change in the law so that a safeguarded process is available.
Question: A general election is unlikely until 2022 so we have time to influence who gets elected and vote out objectors and vote in supporters. Have you any experience of doing this?
Answer: In a run up to a general election HUK cannot be party political as we are a charity. All we can do is provide information about the views of different parties and MPs and provide information to help people write to MPs and challenge MPs at hustings and MPs on your doorstep. We would like to see MDMD do more along these lines but it is difficult to get involved in MP selection. Better to get involved with party political groups suggesting policy on assisted dying.
FATE, Humanists Scotland and DiD are working together on an ‘Empower at the End’ campaign to get a right to a dignified death and palliative care into political manifestos and debated at party political conferences.
Question: The law hasn’t changed much but medical practice has changed. If one wants to go to Switzerland and need your medical records the doctor will ask why and cannot give them to you. Surely it is up to insurance companies and the BMA to do something about this?
Answer: A doctor is obliged to give you your records but there are problems. BMA policy forbids it although there was a shift one year but then shifted back again. The British Medical Journal is calling for debate on the subject of assisted dying. HealthCare Professionals are trying by supporting it but more medical bodies in favour would be helpful.
Thank you to both speakers and everyone for coming and FATE for co-sponsoring the meeting. It is good to see the three groups working a lot closer together, with a similar approach, as we have a lot in common.
Dr Erika Preisig | President of Lifecircle in Basle
Slides are available here.
There are 2 pieces of audio embedded here, please find them on this page: https://www.mydeath-mydecision.org.uk/info/lectures/october-2017-erika-preisig-lecture/
The room was full to capacity with attendees coming to London from as far afield as Scotland, Devon, and in the case of the speaker, Switzerland.
Dr Preisig started by saying death is “100% sure” in life, so it is strange to her that not everybody can talk about it. She has seen the wish for a peaceful death at the end of life expressed through both professional and personal experience in her work as a GP specialising in palliative care, and the experience of her father who had a quality of life that he found unacceptable following his second stroke.
Her father had tried to end his life by overdosing on pills, but all that happened was that he slept for three days and then woke up. He indicated through gesture that he would jump in front of a train to make things certain. Erika said that moment changed things for her. As a doctor, she had been opposed to medically assisted dying. Now she saw it as part of, not in opposition to, palliative care: there could be “a self-responsible way of living and a self-responsible way of dying”.
Dr Preisig worked for Dignitas for several years, and saw the relief it brought to patients. She set up her own organisation, lifecircle, in 2011, and believes that “when someone is promoting assisted dying, they should also promote life. Don’t leave life too early.”
When someone applies to Lifecircle, the initial focus is on their living will and promoting good quality of life. It is only later, when the patient feels truly unable to go on, that they can request a medically assisted death. The name Lifecircle comes from recognition that birth and death are both ceremonies within the circle of life. Erika’s father was comforted and happy at the end: he had a ceremony to celebrate his life, and two days later he died peacefully through assisted dying.
The end of life, Dr Preisig says, should be talked about openly. Baby boomers are used to self-determination, so it will be interesting to see if they will be the ones to bring about a change of law in the UK. We all want acceptable good health in old age, but once illness occurs the patient can find it is already out of their hands.
In the Netherlands, old age plus minor health complaints will not qualify a person for a medically assisted death, and the single biggest group for death by suicide is men in the 80+ age bracket. This “old age rational suicide” is more distressing for everyone than it would be to have assisted dying, where friends and family can choose to be there, just like choosing to be at the birth of life.
Two-thirds of those who have planned to have a medically assisted death never take it up. The one-third that do sometimes have to go too early in case they become too ill to travel. Dr Preisig says this is why she will keep fighting for legalisation in other countries: it would be far more humane to treat people in their own homes.
Switzerland is currently seeing “suicide tourism” in the same way women used to have to travel for abortions. Perhaps in the UK, the changes that prompted the 1967 Abortion Act can guide us in successfully making the case for medically assisted death.
QUESTIONS AND ANSWERS
It was good foresight from Dr Preisig to allow for an extended Q&A session, as there were plenty of hands in the air and some excellent questions. These included:
Q: If you have made a living will and given a copy to your GP, how do you know that if you collapse the medical professionals won’t use CPR?
A: In Switzerland, the emergency services used to override it. The law changed in 2013 with patients given the right to sue doctors who ignore their living will, so it now tends to be respected. An exception would be that sometimes medical professionals will still treat if it is an unexpected event with a high probability that the person will recover to a good quality of life. [In the UK an advance decision to refuse treatment is legally binding on healthcare professionals to prevent treatment. For more information see our page regarding end of life planning here <ASSISTED DYING (OVERVIEW)>.]
Q: What is the legal threshold in Swiss law for medically assisted dying? What about someone with Chronic Fatigue Syndrome, or a patient who has a living will and later develops dementia?
A: The patient must be of sound mind, the wish to die must be their own and of long duration, they must be able to explain why their medical problems have resulted in an unacceptably low quality of life. Old age is a permissible factor at Lifecircle: “Some people say you can reach 85 with nothing wrong with you, but this is not true” – cumulative small medical complaints can add up and be accepted as good reason.
At Lifecircle the patient is set up with a saline IV drip, which is attached to a device containing the lethal drug liquid nembutal (pentobarbital). You need to be able to show self-determination at the point of medically assisted death: stating your name and date of birth, where you are, why you are there and that you know what will happen when you open the perfusion. Patients are filmed so that it is clear that they have knowingly self-administered the drug. At Dignitas and EX International, the other two clinics in Switzerland, the process is the same except that the patient swallows the liquid nembutal rather than administering it through an IV drip. Dr Preisig prefers the IV method because it avoids any unpleasant taste or burning sensations in the throat. Patients will lose consciousness within one or two minutes of taking the drug, and die a few minutes later.
Conditions such as Chronic Fatigue Syndrome which are classified as psychological illnesses are “very tricky” because Switzerland doesn’t accept foreign nationals for psychological assessment. Dr Preisig says “this is why we need it in all countries” because your GP is best able to understand long-term conditions. There is an outside chance that a psychological assessment in the UK would be accepted in Switzerland but it is by no means certain.
Assisted dying is no longer possible once the patient is in a demented state. This is one of the difficulties because it means if you are in the early stages of dementia you have to decide to go early. Your living will does still have to be respected with regards to withholding treatment, so if you have clearly stated that you do not want to be fed, it is likely that nature will take its course as most dementia patients don’t want to eat. Further discussion clarified that in the early stages of dementia, once it has been formally diagnosed but before mental capacity is lost, it is possible to be accepted for an assisted death in Switzerland.
Q: Is support for medically assisted dying incompatible with holding a Christian faith?
A: Dr Preisig said she was brought up by Salvation Army parents, but by the time she was helping her father die he couldn’t speak and so they couldn’t talk about whether it was a sin. “I thought it was a sin and that I might be punished for it. But now I believe that, if there is a God, he does not reject what I’m doing.” Over the years, she has been accused of playing God but says “I’m not playing God, I’m just listening to the people”. She believes in a loving, understanding God who would see no difference in providing assisted dying or putting in a stent to prolong someone’s life – there is no reason why medical intervention should be accepted one way but not the other.
Q: How can we have a global campaign getting through to people that death is a part of life and it should be everyone’s choice?
A: The problem is that we have people most affected who are too ill to physically campaign, to stand up and say in a big group that they want this legalised. The cases of Omid <goes to OMID SECTION> and Noel Conway <goes to NOEL CONWAY SECTION> show how badly those who are suffering have to fight and they can’t physically do it alone. We have to do it on their behalf.
Dr Els van Wijngaarden | University of Humanistic Studies in Utrecht
Slides are available here.
There is a piece of audio embedded here, please find it on this page: https://www.mydeath-mydecision.org.uk/info/lectures/2017-annual-lecture/
Els talked about the work she did for her PhD in which she studied 25 people aged over 70, who felt that their life was complete and no longer worth living, despite not having severe medical conditions. These people were not eligible for euthanasia under the current law in the Netherlands, but could be eligible under proposed changes to the law which are currently under discussion. Her work developed both an in depth understanding of the phenomena, and investigated what it means to live between intending to end one’s life and actually doing so.
She identified a number of common threads experienced by these people: aching loneliness; not mattering; inability to express their identity; multidimensional tiredness; and aversion towards feared dependence (such as needing to move to a care home). The people felt that their personality was dependent on them being able to do something that mattered, feeling connected, and being independent. But they had reached the stage when they realised that this was no longer possible. As a result they felt that death was the only way out and they were considering means of bringing this about.
While understanding the underlying reasons for people wishing to end their life, Els suggested that caution was necessary in any legislation which permitted medical assistance for such people. In particular she highlighted the difficulties of safely establishing the consistency over time of the person’s decision; of ensuring there was no external pressure in reaching the decision and of establishing that non-medical suffering was insoluble – for example by offering better social support.
Prof Celia Kitzinger | University of York
Co-Director of the Coma & Disorders of Consciousness Research Centre
Working with Prof. Sue Wilkinson, founder of Advance Decisions Assistance
Slides are available here.
There is a piece of audio embedded here, please find it on this page: https://www.mydeath-mydecision.org.uk/info/lectures/2016-annual-lecture/
Celia started her talk by explaining what an Advanced Decision (AD) is – a legally binding way of making decisions about health care if mental capacity is lost including the Right to Refuse life prolonging medical treatment. It is not the same as apparently similar documents such as: Do Not Resuscitate; Advance Statements; Advanced Care Plans or overseas Documents relating for example to Dignitas.
A Lasting or Enduring Power of Attorney is a way of giving someone else the power to make decisions over medical decisions concerning you, when you do not have the mental capacity to make them yourself. If there is a conflict between the statement in an AD and the opinion of a Power of Attorney, the most recent will take precedence.
To write an AD a person must be over 18 and have the mental capacity to do so – depression and other mental illnesses are not necessarily disqualifications. A solicitor is not required.
If you have the mental capacity, you have the absolute right to refuse treatment i.e. You are the decision maker. An AD extends this right in the situation where you do not have mental capacity.
The Mental Capacity Act 2005 defines “Mental Capacity” as the ability to understand, weigh up and retain information. Mental Capacity can be decision specific. It can be lost permanently or it can fluctuate. An individual is presumed to have mental capacity unless it can be shown that they have lost it. An individual is entitled to support if mental capacity is either fluctuating or temporarily lost as in dementia.
In effect, having an AD gives you the right to refuse treatment prospectively and allows you to retain your autonomy and personal decision making.
An Advance Value Statement is important too. It can include your personal definition of recovery. It provides an opportunity to express your values and beliefs – it clarifies what you value in life. It explains why you have made the decisions you have made in your AD. It can provide the opportunity to persuade those professionals involved in your care to give you the care you wish for. It also provides an opportunity to thank the healthcare team for respecting your views. A carefully worded personal statement can be very convincing – so can an accompanying video discussion with someone asking challenging questions.
To ensure your AD is effective, consider your AD in relation to your Enduring or Lasting Power of Attorney (EPA/LPA). Ensure you are refusing what you want to refuse. If you change your mind, update the changes then date and sign them. If your circumstances change, update and sign these also.
It is advisable to discuss your AD with your GP. If you have doubts about your mental capacity, get a statement of capacity.
There is currently no central register so make sure you give a copy to your GP, to family, to friends, neighbours – anyone for whom it might be relevant. You need to ensure it is seen by health care professionals before they treat you.
Carry a copy with you if you go to hospital. Re-visit and if necessary revise your AD before an operation.
You can not use an AD to request an Assisted Death. Assisted Dying is not lawful in the UK. Even if it was, an AD is about refusing treatment. An AD cannot be used to demand poison, nor can it be used to compel doctors to give you a particular treatment. However, it can indicate you would accept sedation and it can cover refusal of treatment following suicide attempts.
Celia’s talk discussed a number of useful examples of ADs, and demonstrated the different concerns people have in their 20’s from later in life when their medical situation is clearer.
Celia ended her talk by considering ADs in the context of attempts to change the law on assisted dying. She explained that in the debate around the introduction of ADs, the same arguments were used as are now being used against a change in the law to permit assisted dying:
- That they may discourage Palliative Care &/or Rehabilitation
- There are huge uncertainties around diagnosis and prognosis
- The possibility that at the time of writing your AD you may not actually have wanted it and/or you were being bullied or coerced into writing it
- The fear of being a burden
- By the time the AD applies, you may have changed your mind
- The role of doctors and conscientious objectors in relation to the Hippocratic Oath
She then considered the primary objection to changing the law on assisted dying – how to protect vulnerable people. She highlighted the Care Act 2014 as legislation that already exists to protect the vulnerable. The idea is not to overrule the wishes of an adult with capacity, but to ensure that they are making decisions freely. There are many health and welfare professionals who are experienced in assessing a person’s capability to make decisions and the extent to which they may have been persuaded by others. She proposed that right to die proponents capitalise on this experience.
Phil Cheatle, recently appointed Coordinator of SOARS (now MDMD)
Michael Irwin stood down as SOARS Coordinator at the End of August 2015. Phil, who had previously been the Associate Coordinator, was selected to take over as the new Coordinator by the Executive Committee, with Michael’s endorsement. Phil had led the SOARS discussion around the topic of a Completed Life and was the principle author of the resulting SOARS position paper on When is a Life Complete <KEY QUESTIONS SECTION>.
Phil’s talk started by discussing the origins of the Completed Life concept in the ideas of Huib Drion in The Netherlands, and the work that has been done within SOARS over the past year to formulate our own definition. By using conceptual graphs of ‘quality of life’ vs ‘age’ Phil explored some of the complexities people face when contemplating their own completed life decisions. The ideas were illustrated with examples of people’s deaths which had recently been in the news such as Gill Pharoah.
He also mentioned his mother as an example of someone who felt her life was complete and who wanted to die, but had no means of bringing this about. [Joan Cheatle subsequently died of ‘frailty in old age’]
The talk went on to suggest some ways that SOARS supporters can make use of the Completed Life concept in their conversations with others. It ended by proposing the concept of an Extended Advance Decision whereby at the time or writing a valid Advance Decision, someone formally sets out their wish for the option of a medically assisted suicide if at some point in the future, their quality of life irreversibly falls below the minimum quality they are prepared to accept. Such a statement would go a long way towards allaying any reasonable concerns that a vulnerable elderly person was being pressured into requesting a medically assisted suicide, when that eventually becomes a legal option in the UK.
Slides are available here.
Professor Jan Bernheim
Emeritus Professor at the Vrije University in Brussels
Professor Jan Bernheim is a medical oncologist, who has been at the forefront of the development of the palliative care movement and voluntary euthanasia in Belgium for many years. The main points made in his talk were:
“Voluntary euthanasia (terminating the life of another person, at that person’s request) is one more step in the control of people over their existence.
“Although in most advanced countries where public opinion has been surveyed, vast majorities favour (voluntary) euthanasia, influential professionals and politicians have so far often resisted it. Motives invoked to oppose euthanasia include the preservation at all costs of all forms of human life, and fears that legalized (voluntary) euthanasia would entail slippery slope effects, erode confidence in medical practitioners and be used instead of palliative care.
“Palliative care is another endeavour to increase human control over dying. But, it can sometimes be more than that. An explicit motive of Dame Cicely Saunders when she initiated palliative care in the UK, in the 1950s, was the prevention and dissuasion of voluntary euthanasia. Yet, palliative care and (voluntary) euthanasia share several fundamental ethical values, including beneficence to the patient, respect of patient autonomy, and an aversion to medically futile treatment. Nevertheless, elsewhere than in the Benelux countries, palliative care and legal (voluntary) euthanasia are usually widely viewed as antagonistic societal developments and adversary political causes.
“Since 2002, in the Netherlands and Belgium, and 2009 in Luxembourg, (voluntary) euthanasia has become legal when requested by a competent and well-informed, irreversibly suffering, adult, performed carefully by a doctor after consultation with at least one other competent physician and reported to a Control and Evaluation Commission. And, earlier this year, in Belgium, requests for euthanasia from irreversibly suffering adolescents, judged to be capable of deciding on the way they would like to die, were also made legally acceptable.
“Whilst in the Netherlands, the palliative care and the (voluntary) euthanasia movements were quite separated in personnel and time (legalized euthanasia preceding the development of palliative care), they largely went hand-in-hand in Belgium – both had wide public and multi-partisan support. The first palliative care initiatives came from advocates of (voluntary) euthanasia at the Free University of Brussels, where also contraception, abortion and assisted procreation had been pioneered. What they propagated was patient-orientated ‘Integral End-of-Life Care’, consisting of conventional palliative care and/or (voluntary) euthanasia, according to the patient’s informed wishes.
“Many of the Belgian founders of palliative care deemed (voluntary) euthanasia unethical if it was conducted for lack of adequate palliative care services – they supported euthanasia as a means of offering patients real choices.
“Within Europe, Belgium was second only to the UK in palliative care development, when it legalized (voluntary) euthanasia in 2002, and since then, its palliative care budget has consistently increased by an annual 10%.
“The euthanasia bill was enacted by Parliament, in 2002, by 86 votes in favour, 44 opposed and 12 abstentions, together with a bill on patient rights, and one expanding the reach of palliative care nationwide, doubling its funding and integrating palliative care with national health insurance. Though voting was not quite along party lines, the large majority was made possible by the fact that, for the first time in decades, the Christian Democrats were in opposition. The palliative care and patient rights bills were almost unanimously adopted.
“In Belgium, physicians trained in palliative care tend to practice (voluntary) euthanasia more than their untrained colleagues. Interestingly, spiritual care is found more intensive in cases of (voluntary) euthanasia than in conventional dying.
“I believe that patients who are assured of (voluntary) euthanasia – if and when they judge the time has come – tend to live longer than their counterparts dying conventionally. I think that there are three main reasons for this. Firstly, euthanasia usually only has a modest impact on lifespan (the estimated hastening of death, in 55% of patients who die by euthanasia, is less than one week). Secondly, the possibility of a ‘good death’ seems to confer psychological advantages such as reduced anxiety, more attention to spiritual accomplishment, and more concentration on quality of life – all of which may promote hanging on to ‘life’. And, thirdly, treatment acceptance and compliance may be increased – some patients agree to possible life-prolonging treatment only on condition that, if non-tolerated adverse effects should occur, they will be granted euthanasia.
“Although the incidence of patients in Belgium receiving non-voluntary euthanasia, since 2002, has halved, this practice still unfortunately continues – although this is now essentially limited to unconscious, dying patients, many of whom have previously requested euthanasia. And, today, Belgian physicians naturally use the “double-effect procedure” far less than elsewhere.
“The main condition for (voluntary) euthanasia is ‘unbearable suffering’ – suffering that can no longer be tolerated by a patient.
“About two percent of Belgians die with (voluntary) euthanasia – at least half of them after following a conventional palliative care pathway. And, about half of all euthanasia deaths are performed by GPs in a patient’s home.
“Less than 0.1 percent die by physician-assisted suicide (where the patient ingests a drug provided by the doctor) – although many physicians state that they would ideally prefer this because then the autonomy of the patient is thus more obvious. It seems that many patients have more trust in their physician doing it right than in themselves.
“At least half of all requests for euthanasia are effectively carried out. Only five percent are refused – usually, because the legal conditions are not met. About ten percent of requests are withdrawn. But, in a quarter of all cases, the patient died before euthanasia could be performed, which suggests belated requests, and possibly procedural delays.
“Belgium is also the first country where, under strict conditions, patients with irreversible neurological conditions, whose request for euthanasia has been granted, can also give added meaning to their life and death by donating their intact organs for transplantation.
“Unlike in the Netherlands, citzenship is not a legal requirement for euthanasia in Belgium, but euthanasia is conditional upon a profound patient-doctor relationship. Therefore, there is no evidence of ‘euthanasia tourism’.
“Guidelines by medical and palliative care organizations, including the Federation Palliative Care Flanders, the Medical Disciplinary Board and the Flemish General Practice Scientific Association have endorsed this concept of ‘Integral Palliative Care’ (that is, conventional palliative care including voluntary euthanasia).
“In practice, among end-of-life caregivers and palliative care units, just like among patients, there is a pluralism ranging from full acceptance to total avoidance of euthanasia, and these personal attitudes are respected.
“Euthanasia is, above all, a choice by a competent and well-informed patient – and, not a decision by the physician. So that all the doctor has to do is decide for himself or herself whether to participate – that is, to be instrumentally and actively involved in the process.
“This integral end-of-life care has not eroded the confidence of Belgians in their health care system: on the contrary, while confidence was 87% in 1999, it rose to 91% in 2008 – the second highest after Iceland of all countries studied in the Europeans Value Survey.
“Yet, some problems persist. For example, some Catholic healthcare institutions still exert pressure on their staff to abstain from euthanasia. And, though the reporting rate of (voluntary) euthanasia steadily increases, too many cases still remain unreported, especially in the French-speaking half of Belgium. However, it must be remembered that, before the present law, there was no control at all. Illegal clandestine end-of-life practices, performed without peer control, as happened in the past, are much more worrying than even imperfectly regulated legal euthanasia. Now, it can be argued that the openness of end-of-life practices, especially under the scrutiny of medical colleagues who are conscientious objectors, is perhaps the best control.
“For those physicians who are still inexperienced with (voluntary) euthanasia, guidance and assistance can now be provided by colleagues of the Life End Information Forum – for both the legally required second-opinion consultation by an independent physician and also for technical advice.
“Irreversible, intolerable suffering is also the justification for (voluntary) euthanasia for some elderly patients with a number of chronic incurable ailments who, with the additional loss of dignity and independence, have reached the stage of a completed life.
“The drive for legislation of (voluntary) euthanasia enhanced the development of palliative care in Belgium: and, at the same time, a well-developed palliative care system made the legalization of (voluntary) euthanasia generally more acceptable. Voluntary euthanasia can be an integral part of palliative care. Recent epidemiological studies have shown no ‘slippery slope’ effects of legalized (voluntary) euthanasia, and the carefulness of end-of-life decisions has increased.
“The Belgian experience deserves to be brought to the attention of other countries debating end-of-life issues. The principles underlying the Belgian model of integral end-of-life care are individual citizen self-determination, physician accountability, and respect for the religious and philosophical life stances of patients and caregivers. The Belgian model is evolving (and many other important issues are the subject of ongoing professional, societal, and political debate). This is the hallmark of Belgian society, whose culture and politics has always required a high degree of tolerance and compromise. Although a predominantly Roman Catholic country, there is a tradition of liberalism and secular humanism manifest at all levels of society.
“It can be argued that both beneficence and respect for autonomy are manifestations of the virtue of compassion, especially understood as the ability to put oneself in another person’s place. In other words, compassion encompasses respect for autonomy. Notwithstanding that autonomy is in high regard all over the spectrum of life choices in Belgium, I think that the emergent and main motive for developing the Belgian model was compassion”.
Dr. Rob Jonquiere
Communications Director of the World Federation of Right to Die Societies, retired Dutch physician, and former CEO of NVVE (the main right to die society in The Netherlands)
NVVE, the main right to die society in The Netherlands, has a membership of 130,000.
The World Federation of Right to Die Societies is a global organization of 52 right to die societies, including SOARS, in 26 countries.
The main points, made by Dr. Jonquiere were the following:
“When Huib Drion – a Professor of Law, and Vice-President of the Dutch Supreme Court – published his article ‘The self-willed end of life of old people’ in a major Dutch newspaper (NRC Handelsblad) in October 1991, he never could have imagined the impact his publication would have on the debate on end-of-life decisions in The Netherlands and abroad. It was the first time – as far as I know – that the emphasis was explicitly laid on the possible suffering of the elderly, in a period in which ‘euthanasia’ became more and more an issue of public attention and discussion in The Netherlands”.
In this article, Professor Drion had written “It seems to me beyond any doubt that many old people would find great peace of mind in the knowledge of having access to a way in which to say goodbye to life in an acceptable manner at the moment that this – in view of what life might have in store for them – seems appropriate to them”.
“Although pro-choice campaigners in The Netherlands, at the start of the public debate about assisted dying (in the 1960s), emphasized the right to self-determination to be the main foundation for having a ‘good death’ (in Greek, ‘euthanasia’), soon the attitudes and principles focused more on the issue of mercy and on the medical perspectives.
“That medical perspective was not only essential – since a doctor was nearly always involved – but it also provided lawyers and legislators ample opportunity to connect medical and judicial arguments in such a way that a law would have to fit both the judicial and the medical practices. We see in the debates leading towards the implementation of the Dutch law (‘The Termination of Life on Request and Assisted Suicide Act of 2002’) that even lay campaigners emphasized the role of doctors, as doctors had in the past fulfilled the secret (as it was illegal) duty to comply with the cries for help from suffering patients and assisted them to die in a humane way. It is thus not surprising that the main reasons to think and talk about (let alone to perform) euthanasia could be found when the somatic suffering became unbearable and hopeless so that doctors provided relief with appropriate medications.
“But, Professor Drion’s views on assisted dying and the broad public attention towards a right to die for everybody that considered their life no longer worth living caused some problems for pro-choice campaigners. Many doctors were not looking forward to assist in cases that did not fit within a medical domain. Politicians recognized immediately the importance that only a medical perspective would make legalization of assisted dying possible.
“Immediately after the triumph of finally having the law in place and assisted dying on request available for seriously-ill patients, the pro-euthanasia campaigners adapted their goals. The debate should now focus on three categories of people for whom a self-chosen end of life so far had in fact remained out of reach – demented human beings with an adequate advance directive; patients with a chronic psychiatric illness who had come to the end of meaningful treatment; and, elderly people who for a variety of reasons judged their lives completed.
“Now, it was decided to introduce the criterion of ‘irreversible loss of personal dignity’ in addition to the criterion of ‘ hopeless and unbearable suffering’ (the latter being a key factor in the 2002 Act). Research found that, for the elderly person, the loss of personal dignity is often a more important reason for the self-chosen end of life than unbearable suffering in the narrower sense. While for the doctor the suffering is central, for the elderly patient the loss of dignity is paramount. Here the problem is not so much physical, but social and emotional, with a severe loss of self-reliance and any direction over personal life.
“Another consideration being discussed now is the possible introduction of ‘counsellors in dying’. Starting end-of-life discussions, when severe suffering is caused only by illnesses, Dutch doctors occupy the central position with the present euthanasia law. When such suffering is no longer the only criterion, it is advisable that perhaps a new category of non-medical professionals could be entitled to give assistance – such as ‘counsellors in dying’.
“In our present Dutch euthanasia law, the person who wishes to end their life is really not in the strongest of positions. Of course, that person’s voluntary and well-considered request for assistance to die is important, but, in the end, it is the doctor who decides.
“Professor Drion always said (in spite of some contrary views by those opposed to him) that he thought doctors would have to be involved in the assisted suicide of elderly people because they own the key to the medicine cabinet, because only they – and no one else – are capable of determining the dosage and application of the medication needed, and, speaking from a Dutch point-of-view, the family doctor, who knows the elderly person well in our country, is the best positioned professional to assess the seriousness of the request and the (non) availability of alternatives.
“‘Completed life’ is not in all respects a satisfactory term. It can sound as if life is a manufactured product, detached from nature and the social environment. Other possible terms used are ‘tired of life’, ‘finished with life’, or ‘suffering from life’. Each of these terms has its drawbacks, but, in the end, ‘completed life’ has generally been chosen as the best to use, in these discussions, in The Netherlands.
“The conclusion that life is completed is reserved exclusively for the concerned elderly persons themselves. . Never for the state, society or any social system. Only the elderly themselves experience their own lives. They alone can reach the consideration whether or not the quality and value of their lives are diminished to such an extent that they prefer death over life. The reasons to do so are varied. Usually there is a combination of reasons that can lead them to the conclusion that their lives are now complete.
“The elderly have feelings of detachment and stillness. They experience a strong decline of involvement in life – life does not mean quite so much anymore. The elderly have feelings of isolation and loss of meaning. The elderly are tired of life – they are no longer able to do things that are meaningful to them. Their days are experienced as useless repetitions. The elderly become largely dependent on the help of others, they have no control over their personal situation and the direction of their own lives. The elderly struggle with physical, social and mental decay. The loss of functions and increasing physical problems cause feelings of degradation and shame. Loss of personal dignity appears in many instances to be the deciding factor for the conclusion that their lives are complete.
“The decision to end one’s own life is naturally very far-reaching. The ties to life are very strong. This makes deliberations between continuing a life which is felt as unliveable, and the ending of it, so difficult. However, when it becomes clear that in this life nothing substantial can be changed into liveable conditions any longer, the elderly person can reach the conclusion that this life has to be considered as completed. This elderly person then may prefer death over life and wish to die in dignity and peace.
“During the debates in our Parliament, at the beginning of this century, about the euthanasia law, the problem of a completed life was discussed, and the Government decided that the law should not apply to this situation. This was necessary then, because, without this exclusion, the law would never have obtained the required majority. However, in fact, there is nothing in the actual text of the 2002 Act which excludes dying assistance in situations of a completed life.
“Then, the 2004 report of the Dijkhuis Commission advised the Royal Dutch Medical Association (KNMG) that, in certain situations, euthanasia legislation could be appropriate for some elderly individuals. And, the KNMG has now decided that, as most elderly persons who say that their lives are now completed will have many minor, age-related ailments and problems, these may jointly constitute sufficient basis to call this a degree of suffering which can be considered as unbearable and hopeless, and so fulfil one of the most important criteria of the present law. This is now seen by a majority of Dutch doctors as an important step forward. And, the Regional Review Committees, supervising the implementation of the 2002 Act, have agreed that the necessary requirements of the euthanasia law are being met.
“The decision to end one’s own life requires courage and mental capacity. It is a decision that nobody takes easily. But, the availability of assistance with a dignified suicide is a great reassurance for many elderly individuals. Often, this reassurance, on its own, gives them the strength to continue living. In many ways, The Netherlands can be considered as a country that can be a guide to the world in this important subject, providing better and real choices at the end of somebody’s life.
“Regarding those with existing advanced dementia, who have adequate advance directives, the present Minister of Health, Edith Schippers, in close cooperation with the KNMG, has invited a group of experts to examine the subject, and to possibly produce a protocol for doctors to follow so that such assisted dying requests can become legal. The report of this expert group is expected in the coming months.
“In situations where patients fully meet the requirements of our euthanasia law, but where their doctors refuse to comply with their requests, the NVVE has established ‘Life End Clinics’ (SLK), with the hope that this arrangement will be temporary. These are not clinics in the literal sense of the word – they are a team of a doctor and a nurse who will visit the suffering patient at their home. The team will always try to involve the patient’s doctor and often they do eventually convince this doctor to perform the necessary euthanasia with the support of the SLK team. In the first year of this NVVE-sponsored programme (March 2012 to March 2013), 104 persons received euthanasia.
“In this lecture, I will also tell you about the work of a group known as Uit Vrije Wil (‘One’s Own Free Will’), which started a citizens’ initiative – for a ‘Completed Life’ – in 2010. It published a manifesto which advocated the legalization of dying assistance for the elderly, who considered their lives completed, by non-medical professionals. Within one week, this initiative received the required number of 40,000 declarations of support to put this subject on the Parliamentary agenda. And, when the citizens’ initiative was finally submitted to the Dutch Parliament, in May 2010, there were over 120,000 declarations of support, including a number of well-known individuals in our country – naturally, this matter received massive media attention. In time, this proposal will be discussed in our Parliament.
“One’s Own Free Will designed concrete proposals on how such assistance could be provided in its draft Bill called ‘Dying Assistance for the Elderly’ which included – The elderly person being assisted to die must have Dutch nationality or be a national of a European Union member state with a minimum two years as a resident of The Netherlands; two ‘counsellors in dying’, working closely together, must be convinced that the elderly individual’s desire to die is voluntary, well considered and that nobody (a relative or friend) is applying any pressure; the prescription for a lethal medication is only provided by a doctor; and each assisted death is reported to, and carefully reviewed by, a Regional Review Committee.
“In conclusion, I give you a final quote from Professor Huib Drion, stated in 1991 – ‘The realization to prevent (in the future) an unacceptable existence, will give many old people great peace of mind’”
DIGNITAS is a non-profit-organization founded on May 17, 1998 in Forch, near Zurich, by Ludwig Minelli, a human rights lawyer. The main points of Sylvan Luley’s extensive talk, which broadly relate to the concept of old age rational suicide, were the following:
“We all want to live. However, we don’t just want to barely live. We have personal views which determine whether our life still holds some value for us.
“The healthy cannot judge over someone who is suffering what that individual’s life is worth, whether or not it’s worth carrying on.
“It is Dignitas’ first and most important task to look for solutions which lead towards re-installing quality of life so that the person in question can carry on living. At the same time, if solutions towards life are not possible, the option of a dignified death must also be looked at.
“Today, Dignitas, with its sister association Dignitas-Germany in Hanover, which was founded on September 26, 2005, has some 6,500 members in 70 different countries around the world. As of today, 899 of our members live in England, Wales and Scotland. We have an office in Forch and we have a house in Pfaffikon-Zurich where accompanied suicides for members from abroad may take place. There are 20 people working for Dignitas, most of them part-time, comprising board members, an office team and a team of companions who visit patients and assist with accompanied suicides.
“Most important, Dignitas does not restrict its services to Swiss residents. The Good Samaritan did not request to see a passport before he helped the injured man on the road. Dignitas ignores borders as far as possible.
“The core goal of Dignitas is to disappear, to vanish, to close down…..However, as long as most countries’ governments and legal systems disgracefully disrespect their citizens’ basic human right to a dignified end in life and force them either to turn to risky suicide attempts or to travel abroad instead, Dignitas will serve as an ’emergency exit’.
“People are not the property of the state. They are the bearers of human dignity, and this is characterized most strongly when a person decides his or her own fate…..The freedom to shape one’s life includes the freedom to shape the end of one’s life. However, departing on such a ‘long journey’ entails responsibility. All individuals are part of society. Therefore, one should not set out on this journey without careful preparation, nor without having said appropriate goodbye to loved ones.
“On January 9, 2002, the Swiss government explained that according to scientific research, for each committed suicide there are as many as twenty to fifty attempted suicides…..Dignitas’ experience, derived from 14 years of taking care of people who wish to end their life for all sorts of reasons, is that society should focus on the prevention of suicide attempts…..One-third of our daily counselling work by telephone is with non-members. Additionally, we have a free-of-charge internet forum with some 2,500 registered members, set up like a self-help group, cared for by a professional mediator…..First and foremost, we are a suicide-attempt-prevention organization and therefore a help-to-live organization.
“Over its 14 years of existence, Dignitas has led or been involved in dozens of legal cases…..(in particular) this led, on January 20, 2011, to the European Court of Human Rights’ decision in the case of Haas vs. Switzerland – ‘In the light of this jurisdiction, the Court finds that the right of an individual how and when to end his life, provided that said individual was in a position to make up his own mind in that respect and to take the appropriate action, was one aspect of the right to respect for private life under Article 8 of the Convention’. Many opponents of the ‘freedom of choice in last issues’ will claim that there is no right to die. They are wrong; certainly within the jurisdiction of the European Convention on Human Rights.
“Another line of our legal work is engaging in legislative proceedings. As to the UK, we had a visit from the House of Lords Select Committee on Assisted Dying for the Terminally Ill Bill, led by Lord Joffe, in 2005. There was also the investigation of the (Falconer) Commission on Assisted Dying…..they also visited Dignitas…..In Scotland, Member of Parliament Margo MacDonald drafted the Assisted Suicide (Scotland) Bill. To all these projects, Dignitas submitted in-depth responses addressing facts, figures and legal aspects.
“In the case of medically-diagnosed severe or terminal illnesses, unbearable pain or unendurable disabilities, Dignitas can arrange the option of an accompanied suicide upon the request of an individual member. There are many prerequisites linked to the arrangement of such an assisted suicide: the person has to be a member of Dignitas…the person must be mentally competent…the person has to be able to carry out the final action which brings about death by him or herself…the person must send a written request to Dignitas (with) comprehensive historical and up-to-date medical reports showing diagnosis, treatments tried, medication, development of the illness, etc…a Swiss physician (independent of Dignitas) assesses the request and hopefully grants a ‘provisional green light’ (without this doctor’s consent, there will not be an accompanied suicide)…the person has to have at least two face-to-face consultations with the Swiss physician who initially provided the ‘provisional green light’…the person has to be able to stay several nights in Switzerland…(and) the person has to provide several official documents such as a birth certificate, etc…..it all takes time. Therefore, one has to allow for about 3 to 4 months for the whole procedure.
“Only if all the requirements are fulfilled can a Swiss physician write the prescription which allows Dignitas to procure the necessary medication for the accompanied suicide. It’s a lethal overdose of a fast-acting barbiturate which is dissolved in ordinary drinking water. After taking it, the patient falls asleep within a few minutes and drifts into a deep coma which passes peacefully and painlessly into death. Naturally, each permitted use of a fatally effective medication requires a Swiss doctor’s prescription, for only by this means can the drug be legally obtained.
“Our experience shows that only very few people who enrol as a member take advantage of the option of assistance with suicide after all.
“On October 25, 2002, the first UK resident made use of the option of a self-determined end in life at Dignitas, accompanied by his son and daughter; he was from Wales, had been born in 1925 and was suffering from an invasive adenocarcinoma of the oesophagus with metastases.
“There are three groups of suffering, of medical situations, which can generally be identified as eligible for an accompaniment at Dignitas, based on the present legal and factual situation in Switzerland –
(a) There are those who are suffering from a terminal condition, like the man from Wales.
(b) There are people who are suffering due to a severe disability, such as, for example, young rugby-player Daniel James who was almost entirely paralysed after an accident.
(c) And there are elderly people whose life has become too arduous as the result of a multitude of ailments related to old age: a typical example of this was the conductor Sir Edward Downes: at the age of 84, he suffered from heart and blood pressure problems, arthritis in the back and the knees, prostrate problems, and was almost entirely deaf and blind.
“From 2002 until October 2012, 217 Britons – 130 women and 87 men – chose to end their days at Dignitas. (In total, Dignitas has assisted in the deaths of 1,471 individuals from around the world: 866 being female and 605 being male)
“Nowadays, people are living longer, much longer. Of the many reasons for this development, one is the progress in medical science which leads to a significant prolonging of life expectancy…..Obviously, this progress is a blessing for the majority of people. However, it can also lead to a situation in which death as a natural result of illness can be postponed to a point much further in the future than some patients would want to bear an ailment. More and more people wish to add life to their years – not years to their life.
“In the light of this development, limited access to accompanied self-deliverance to certain people, such as those in the group (a) that I mentioned before, cannot be justified. The current projects for legislation on assisted dying in the UK, focusing on the terminally ill, are a step in the right direction. At the same time, they discriminate against people like Tony Nicklinson, and also against those few of the approximately 1.3 million over-85 years old in the UK who, due to their ailments, might rationally wish to end their long life in a self-determined, peaceful manner.
“Most of the difficulties that Dignitas deals with have their origin in the fact that we have always been convinced that the right to die is in fact the very last human right, and thus there should not be any discrimination just because of the place of residence of a person.
“On May 15, 2011, the voters of the Canton of Zurich strongly rejected two initiatives (by 84.5% to 15.5%, and by 78.4% to 21.6%) by religious political parties aimed at prohibiting access to assisted dying. The next political statement followed on June 29th of the same year, when the Swiss Federal Government decided to refrain from legislating on assisted suicide, meaning that the existing law was sufficient. The Standerat – our small parliamentary chamber – followed this opinion unanimously on December 21, 2011, and the Nationalrat – the large parliamentary chamber – confirmed this on September 26, 2012 by 163 against 11 votes.
“Incompetent and biased media – ‘The world’s foremost euthanasia clinic’…’800 Britons on waiting list for Swiss suicide clinic’ – these words are not only found in UK tabloids but also in Swiss newspapers…..a large part of the media uses any opportunity to create hype…..Whilst we could dismiss false information as typical tabloid rubbish or the bad day of a journalist incapable of reading the facts published on Dignitas’ website, the misleading words in fact cause a lot of suffering for which the media ignorantly denies responsibility.
“We – groups like Dignitas, FATE, SOARS and many more – are actually the real pro-life people because our work is about options and choices, about respect for humans.”
During the general discussion that followed Silvan Luley’s lecture, there was universal agreement that we, in the UK, are very fortunate to have the possibility of travelling to Switzerland when we become terminally ill, severely disabled, or for an old age rational suicide – for many of us, membership in a Swiss organization like Dignitas is essentially a good insurance policy.
Author and journalist
Among the observations made by Virginia Ironside were the following:
“A discussion of death is perhaps the most important topic in the world – which makes it so odd that so many people avoid it…..The only reason I can think of, for this, is that so many are afraid of it. Why? – when from the moment we are born, we know we are going to die…..I think this fear of death comes from the religious idea that life is a gift from God and that it would be rude to throw it away. But, life is only worth living if it is worth living: and, for many people, life is not worth living, particularly if they become so ill that they are unable to function at all.
“If I ever say, while chatting to someone, ‘I must do this before I die…’ they usually butt in and say ‘Oh don’t say that…you’ve got lots of time left!’ Total rubbish. I’ve got far less future than I have a past, and I’m delighted. It means I have fewer options open to me, and I can cut out all the rubbish, refuse unwelcome invitations, walk out of boring films. Being young is like being in a huge supermarket, mind bamboozled by all that choice. Being old is like going to the village shop.
“I see death as something rather wonderful to look forward to. I see it like coming home. I see it as a merciful relief from all life’s anxieties and troubles…..It is going to happen to all of us. So why not welcome it and accept it rather than dread it?
“When old people ring up and say, tearfully: ‘Oh crikey, I’ve been told I’ve only got a few months to live,’ I tend to think, ‘Well, what do you expect at your age, dearie? I don’t imagine you were expecting to live for ever.’
“Us oldies have had years and years to get used to the idea of death. We shouldn’t be so weedy about it, we shouldn’t dread it. We should set a good example to the young, and teach them, too, to welcome death, when life gets too wretched or, even, when it’s clear that we’ve spent quite enough time at the party and our hosts are starting to yawn and look at the clock. We’ve got to move on – otherwise we’ll be parents of children who are bent and bald.
“Even Freud said, in a letter he wrote to a friend in 1936: ‘I still cannot get used to the grief and afflictions of old age, and I look forward with longing to the journey into the void.’
“They say that old age isn’t too bad when you consider the alternative. But what is the alternative? Everlasting life? No thanks. Nowhere is the desire to live long seen so clearly as in Miami, a city also known as ‘God’s Waiting Room.’ It’s rather like Hove, with gangsters…..Certainly many in Miami look fantastically old. You see alarmingly pulled-backed face-lifty faces atop crinkled bent old figures, all out of kilter…..In my hotel lobby, there was a book for sale called ‘Secrets of Longevity: 100 tips on how to live to 100’. Heaven preserve me.
“To be fair, most people I know do say they’re not frightened of death so much as frightened of dying. And, none of us wants to enter a strange half-life of pain, blindness, deafness, the loss of our faculties and, often, a complete change of personality…..That is no life for anyone.
“So when some argue about keeping people alive, come what may, I feel like saying: ‘For heaven’s sake, what’s the big deal?’ I’ve already lived far longer than most people were expected to live a hundred years ago. Now, I feel I live on borrowed time.
“It’s not good for our children if we hang around too long. I certainly didn’t even begin to feel like a grown-up until both my parents had popped off…..I have friends of 75 who are still looking after a bonkers old parent, still staggering off to the nursing home to sit by the bedside of a wheezing semi-corpse which doesn’t even recognize them…I have friends whose lives are dominated by their elderly parents…..How will young people ever have a chance to develop if they’re forever shadowed by our ailing, brooding presences?…..Baroness Warnock said that she would far rather die than be put into a nursing home and spend large sums of money which could be better used by her children. My thoughts exactly.
“And, if you think that I’m being creepy, apparently 70% of us welcome the idea of assisted suicide when we get too old, or too ill to enjoy life any more.
“And, finally – famous last words. Yes, you can start dreaming them up right now. Here are some hints – ‘Another sunny day! Thank God I don’t have to go out and enjoy it!’ Or – ‘I long to be nothing and nowhere, and that will be such a relief: to be something and somewhere is very tiring.”
During the subsequent discussion – with SOARS supporters, FATE members, and their guests – the following points were made:
“Death” should be openly discussed, in honest terms: expressions such as “passed away” should never be used. And, worst of all, it should never be said that someone has “lost” his wife or her husband!
In many ways, “Life” is a rather ridiculous situation – homo sapiens is apparently alone in this universe, based on Earth, which is a tiny speck in a vast cosmos, travelling through outer space at nineteen miles a second.
Furthermore, homo sapiens is a recent (accidental?) arrival on Earth – if one’s arm represents the age of Earth (about 4.5 billion years), then the presence of homo sapiens is equivalent to one shaving off a fingernail.
How someone copes with death may be largely influenced by what that person actually thinks survives when death occurs. A poll of the audience revealed that 8% believed that a “soul” continued to exist; 12% felt that there is a non-specific “life force” which energizes all living creatures; 65% felt that nothing survives death (except one’s descendants, writings, photographs, and friends’ memories); and, finally, 15% (perhaps the most honest?) were uncertain what survives when someone dies.
Finally, everyone was reminded of the basic rationale for the existence of SOARS when a 2002 statement from the European Court of Human Rights was quoted – “In an era of growing medical sophistication, combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity”.
Lady Mary Warnock
Distinguished educator and moral philosopher
Lady Warnock’s statement was so clear and direct that the essence of it can be easily given by quoting the following main points:
“The older we get the more realistic we usually become about approaching death, and the more we hope for a good death. Euthanasia in the strict sense is what we all want, whether we will need medical intervention to achieve it or not. This afternoon, I shall speak boldly about euthanasia, and assisted suicide, not hedging it about or sanitising it with the euphemisms of ‘assisted dying’. “Like many people of my age, I have recently witnessed the death of a close relative, my eldest sister, who died this Summer at the age of 101. She did not have a good death; and though its badness lasted only two months, it was avoidable badness, and too long-drawn out…..She got pneumonia and was taken to hospital where she was given masses of different antibiotics…..It was plain that she was dying, but no one admitted this: they spoke as though their one aim was to help her recover, and get her back to where she had been before…..She became unable to swallow and was doubly incontinent, and increasingly distressed and agitated…..her last few days were spent, mercifully, in unconsciousness. “This sad story makes me even more convinced than I was before that everyone must make an Advance Decision and if possible appoint someone to make decisions on their behalf…..Universal understanding of Advance Decisions, and access to proper forms on which they can be made are essential now that we are all living much longer, and it is the responsibility of GPs to bring it about. There should be explanatory notices and copies of the proforma in every surgery, and, at least in the case of everyone over eighty, or with particular health problems, doctors should steel themselves to talk about how their patients would like to die, and what would constitute a good death. And especially they should talk about how to avoid a bad death, and how the doctor is committed to helping in this avoidance.
“Doctors appear to be hard-wired not to mention death, even though they know quite well, as we all do, that all men are mortal. And it is to be hoped that they know that their duty is as much to make death bearable as it is to fend it off, for this is what we all trustingly believe that they will do, until we witness the contrary. The fact is that most doctors are not much interested in death. A dying patient is not their concern, but the concern of relatives and nurses. Once the doctor believes that he has done all he can to cure his patient, that is to prolong life, and has failed, then his interest wanes…..If doctors seem incapable of mentioning death to their patients, how much more incapable are they of bringing it about?…..Instead they could try to embrace the idea that to bring about a good death for one of their patients is simply to continue the duty of caring for that patient, of acting in the best interests of that patient.
“Dying in hospital, though it may be long postponed by advances in treatment and in technology, may also be lonely and horrible, because there are not enough nurses to care for the old in the most basic ways, by spending time with them, by helping them to eat or drink and talking to them. All such neglect contributes to a bad death, even, or perhaps especially, for those who remain mentally competent, and able to recognise with horror what is happening to them.
“Nothing I have said so far bears on what is the most intractable problem of all those we must face when considering the death of the old, and that is, of course, the problem of dementia. We all know the increasing numbers of those old people suffering from some form of dementia; and we all know that the annual rate of increase is rising fast…..There is certainly a strong argument for enabling patients with dementia to have an Advance Decision they may have made fully and properly respected…..This, once again, points to the absolute need for the public to be educated about Advance Decisions. Specifically, it shows the need for early diagnosis of dementia. For in its early stages, dementia does not render its victims mentally incompetent; they are well able to make decisions with regard to their future (witness the admirable pronouncements of Terry Pratchett), and they are still able to retain the sense of who they are and who they have been, which is lost in the final, most bewildering and frightening stages.
“I simply do not want to be remembered as someone wholly dependent on others especially for the most personally private aspects of my life, nor can I tolerate the thought of outstaying my welcome, an increasing burden to my family, so that no one can be truly sorry when I die and they are free…..Our life, for us, is a narrative, with a beginning, a middle, and an end. We want it to have an end that is fitting, not an end that trails pitifully on into chaos and darkness…..Euthanasia ought to mean death that is good, in the sense that it is timely.
“We must hope that Society can get used to the idea of a good death being in the interest of the very old, when they have, one way or another, ceased to enjoy their life. I believe that this change is perhaps not so far off, if only we can persuade the priests and the doctors to listen to those people”.
For the sixty-five individuals present on September 17th, at this lecture, it was a great pleasure to hear Lady Warnock, now aged 86, speaking so eloquently for so many who are nearing the end of their lives.