Later this year, MPs will debate a Bill to legalise assisted suicide. The Bill, drawn up by former Labour Lord Chancellor Lord Falconer, will allow doctors to prescribe a lethal dose of medication to terminally ill patients who have just six months to live. It will be voted on in the House of Lords before the summer and, if supported, will pass to the House of Commons.
Conservative and Liberal Democrat MPs and peers have been given a free vote (their parties will not tell them which way to vote); the Prime Minister David Cameron and Deputy Prime Minister Nick Clegg have both said they will not back the Bill. Care Minister Norman Lamb has said he will. His view, he told Sky News in early March, is that relatives who want to help their loved one take their own life need legal protection against prosecution: ‘Can we really be comfortable with a situation where people, acting out of compassion for a loved one who is dying, are left uncertain as to whether they will face prosecution?’
The Assisted Dying Bill is heavily hedged with safeguards. The person must be aged over 18, be registered by their doctor as having a terminal condition for which there is no cure, have only six months to live and have signed a declaration of their wish to end their life, witnessed by someone who is not a family member or involved in their care and countersigned by two doctors. It requires a 14-day ‘cooling off’ period before their doctor can prescribe the drugs. The drugs must be obtained by a doctor or nurse, who can prepare the medication and assist the person to take it, but cannot actively administer it and must sit with them until they have taken it and have died. If the person changes their mind, the health professional must take the drugs away and return them to the dispensing pharmacy.
Previous attempts to introduce a law permitting assisted suicide in England and Wales have failed, and commentators see little chance that this attempt will be any more successful. The death earlier this month of MSP Margo MacDonald is likely to bring to a close attempts to legalise assisted suicide in Scotland. MacDonald died of Parkinson’s disease, and her long campaign to persuade her parliamentary colleagues to back her Assisted Suicide (Scotland) Bill was driven by her own determination that ‘… I should have the right to curtail my own, and my family’s, suffering’, as she told a BBC Scotland documentary in 2008.
But the majority of the public, in English and Wales at least, support assisted dying. In a YouGov/Dignity in Dying poll conducted in April 2013, 76 per cent of the 1,700 people questioned backed legalisation (just 12 per cent said no) and 72 per cent said they themselves would want to be able to choose to end their life (10 per cent said they would not). There was little difference between men and women and across the age groups: the least support was among the 18–24 age group and the most among those aged 40–59.
However, the British Medical Association, which represents doctors in the UK, is against all forms of assisted dying, as is the Church of England. The Royal College of Nursing has adopted a neutral stance, advising its members that they must act within the law and make clear to patients that they cannot assist them to die or help them obtain the means to end their own life. The Royal College of Psychiatrists has no policy on the issue.
Nor does BACP. But in its response to the consultation on the Assisted Dying Bill, it did propose that people considering assisted suicide should have access to independent person-centred counselling. ‘We feel it would be an important additional safeguard for individuals to talk to a counsellor, who isn’t a family member and isn’t assessing them psychiatrically and has no vested interest in the outcome,’ Nancy Rowland, Director of Research, Policy and Professional Practice, says. ‘Counselling can provide a space where people can unpick their reasons and motivations. It’s a different process from a psychiatric assessment. And there should be counselling for the family too. They may support the person’s decision but afterwards have very difficult feelings.’
Current law and guidance
Currently assisted suicide is prohibited in the UK under the Suicide Act (1961) and is punishable by up to 14 years’ imprisonment. However so-called mercy killings are rarely prosecuted. In 2009, following a Law Lords ruling in favour of Debbie Purdy, who had multiple sclerosis and wanted her husband to be able to take her abroad where she could be helped to die, the Director of Public Prosecutions (DPP) published guidance clarifying the circumstances when the Crown Prosecution Service might pursue a case. They include financial motive, mental competence, whether someone has a mental illness, and any suggestion that the person was persuaded or pressured into taking their own life.
Writing in Therapy Today in December 2009, solicitor and psychotherapist Barbara Mitchels and counsellor Andrew Reeves explored the ethical and legal position of a counsellor whose client expresses an intention to take their own life because of degenerative illness. In their example, the counsellor respected the client’s wish for confidentiality and informed no one. They highlighted the lack of guidance available to counsellors at that time on their liability to prosecution in such circumstances.The Assisted Dying Bill addresses this by making clear the circumstances in which it would be a crime to assist someone to die; it does not specifically create an offence of knowing that someone intends to take their own life and doing nothing to prevent it. So, as Reeves and Mitchels wrote in 2009: ‘Ethical practice and the duty of care to clients still demand that client confidentiality is maintained wherever possible and appropriate and therapists must still pay careful attention to the current law, employment requirements, mental health policy expectations and the capacity of the client to make an informed choice about their living and dying.’
Assisted suicide is legal, under tightly prescribed circumstances, in Switzerland, Germany, the Netherlands, Luxembourg, Mexico and the US states of Oregon, Vermont, Montana and Washington. Voluntary euthanasia (where a doctor administers the lethal drugs on the patient’s explicit request) is legal only in Belgium, the Netherlands and Luxembourg. Belgium also recently passed legislation allowing terminally ill children, under strictly defined circumstances, to choose euthanasia.
A small number of people from the UK have made arrangements to end their own life through Dignitas, the Swiss-based organisation whose motto is ‘To live with dignity; to die with dignity’. According to Dignitas, just 244 people from the UK have used their help to die in Switzerland in the 16 years since it was founded, in May 1998. Indeed, the numbers have been falling year on year since 2009, apart from a spike in 2012.
This is a very pertinent point: to receive their help, the person must be a member of Dignitas, yet only 14 per cent of all those who join and, having completed all the necessary assessments by Swiss doctors and Dignitas itself, are given the ‘green light’ to obtain the lethal drugs on prescription, actually take their own life at Dignitas.
Fear of death
Writing in May 2013, in response to the YouGov poll, columnist and priest Giles Fraser explained why he opposes assisted death. ‘People say they want to die quickly, painlessly in their sleep and without becoming a burden. Apparently this is what a good death now looks like… I do want to be a burden on my loved ones, just as I want them to be a burden on me – it’s called looking after each together… Of course I will clean you up. Of course I will hold your hand in the long hours of the night… This is what it means to love you.’ He went on: ‘My problem with euthanasia is not that it is an immoral way to die, but that it has its roots in a fearful way to live.’
This is a message repeated by many of the counsellors and psychotherapists consulted for this article. ‘People aren’t necessarily afraid of death. It’s the process of dying that frightens us,’ says Judy Parkinson, counsellor and psychoanalytic psychotherapist who worked at the Royal Marsden Hospital with people with terminal cancer for many years. ‘Some people who are dying want to feel in control of the process. They might feel they have lost all control, or a lot of it, of their physical body, of their relationships, that they are not in charge of their daily life any more because they are so ill. Therefore anything that gives them a sense that there is something they can do to be in control might be important to them.’
As a committed Christian she believes that only God can determine the right time to die. ‘However, this is my own belief and I am respectful of people who either do not have a belief or who want to be able to discuss their own decisions about how and when they will die. We are considering an ethical and moral question here: one that is complex and also one that usually involves not only one person but all those who are in relation to that person – relatives, loved ones, those who look after the dying person in hospital and at home.’
Louis Heyse-Moore, a retired doctor, somatic experiencing practitioner and integrative psychosynthesis counsellor, spent much of his medical career in palliative care. As a doctor, he could never have assisted someone to die, he says: ‘Medicine is so very much about doing no harm. To take someone’s life just doesn’t feel right to me.
‘I would try to find ways of working with their distress. My question to a dying patient who talks to me about assisted death would be, “We can explore this and also we can explore what would be helpful to you right now – for example, relieving your pain and supporting you when you feel distressed. It’s not just the talking,’ he emphasises. ‘Psychological and physical distress go hand in hand and the one sets the other off in a spiral. To break the spiral you need to attend to the physical, psychological, social and the spiritual – their sense of who they are, whatever their beliefs – as Dame Cicely Saunders said. A person can lose their sense of meaning and fall into despair.’
Psychodrama psychotherapist Kate Kirk has worked extensively in palliative care with children and adults. Even when someone has made very clear plans to take their own life when their condition progresses to a certain point, suicide is very rare; very often the saying of it is enough to provide some relief, or they are struggling with an issue – pain, family problems – where they can be helped.
‘It’s about Erikson’s eighth stage,’ she says; ‘integrity versus despair.’ Erikson theorised that human life encompasses eight psychosocial stages, the last of which occurs in late life when we look back at what we have achieved. If there is any unfinished business, guilt or sense of failure, we are plunged into despair, depression and hopelessness. If we feel we have lived a successful life by our own standards, we attain what he called ‘wisdom’ – a state of closure and completeness, which enables us to accept death without fear. ‘I often ask people to think what their obituary would say. Is there anything they haven’t done yet and they can still do? Are there relationships that are still broken? It’s about the integrity of knowing you have done everything you could have done versus the despair of not having done all these things,’ Kate says. ‘We should be working for a good ending. A person’s life is their responsibility and ultimately we need to be respectful of their choice. But we need to address the feelings that might be influencing that choice.’
Talking about death
Dignitas argues that there is a taboo around suicide that is inconsistent with a culture and society that is based on self-determination. Sylvan Luley has been working with Dignitas as a volunteer for over 10 years and spends much of his time responding to telephone calls and emails from desperate people seeking help to end their suffering, whether physical or mental. ‘People in our Western society want to be successful, lucky, healthy, in control of their life, fulfilling their wishes, reaching their goals, being respected, taken seriously, loved etc –Maslow’s pyramid at its best,’ he says. ‘“Being oneself” and “doing what one wants to do” are even considered a sign of strength and character, until it comes to the last part in life. Then, if the individual wants to have all this at the end of their life, there come all these doctors, politicians, pro-lifers, priests and so on saying “No you are not allowed to do this”. Suddenly, the right to self-determination is withdrawn, as if someone who wishes to end his suffering is not competent. It’s paternalistic. It’s a contradiction. You are expected to be self-responsible and make rational decisions all your life and then, at the end, you are suddenly treated like a little child.’
The right to end your life is enshrined in European law, Luley points out. The European Court of Human Rights, in its decision no. 31322/07 of 20 January 2011, states: ‘... that the right of an individual to decide 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.’
‘We seem to have forgotten that death is part of life,’ Luley argues. ‘In a way, suicide is the ultimate self-determination, “the last human right”. The people who call us have lost some or all of what they consider to be quality of life. Who are we to judge what is the right quality of life for them? Do I want a doctor, psychiatrist, ethicist, priest, politician or whoever telling me whether I have to live and whether my life is still worth living? We at Dignitas take people as individuals. We try to discuss with them their problems that brought them to contact us in the first place and interestingly in these conversations people often find solutions themselves. Sometimes we can help them in finding doctors and therapists who are more open minded so they feel they and their wish to end their life are taken seriously.’
Judy Parkinson welcomes the debate in Parliament because she believes it will help people feel more able to talk about the issue. ‘It can become part of our discourse about death as a society. It frees us to think and talk, and the effect of that may be that a patient is more able to talk to their friends and relatives and to feel freer and a lot of relief from that.’
A family psychotherapist who has worked for over 30 years with families facing life-limiting conditions, clinical psychologist Jenny Altschuler, like Judy Parkinson, argues that the individual’s decision to end their life affects many other people too, and very fundamentally. There can be significant psychological repercussions for family members and friends: ‘What is missing in the Bill is is any consideration of the family.’ She describes one woman with an advancing degenerative condition who decided to end her own life with the help of a friend because she didn’t want to be dependent on her children. She didn’t tell them. ‘Some of the children said they respected her decision, that she wouldn’t have wanted to live with increasing disability. But the young woman I saw had been much more involved in her mother’s care and she was devastated: first that her mother hadn’t trusted her enough to tell her; second, she felt she could have done something to avoid her taking her life if she had known, and third, she wished she could have known because there were things she wanted to say, to ask, to do. She was left with unfinished business. She felt rejected. It made her experience of mourning much more complicated.’
The subject of assisted death becomes even more complex where the person has a mental health problem, rather than a terminal physical illness. The Assisted Dying Bill covers only physical, terminal illnesses but in Switzerland assisted suicide is legal for any competent adult, regardless of their health; the key issue is the motive of the person assisting them. So people with severe and enduring mental illness can, in theory, access an assisted suicide and anyone assisting them will not be prosecuted, provided they are not going to profit from their death. In practice, however, very few psychiatrists are willing to provide the necessary in-depth report and only a Swiss psychiatrist can write the prescription for the lethal drug.
Rachel Freeth is a psychiatrist and person-centred psychotherapist in the UK. She says she can understand why so few people actually follow through with Dignitas. ‘I have known people who create a stockpile of drugs. It gives them a sense of control. They feel there is a way out; they do have the means. When people tell me that it doesn’t alarm me… I recognise that having some sense of control and power is very important. It’s the lack of power and control that perpetuates people feeling hopeless and disturbed and for me that is at the heart of the mental disturbance anyway.’
For her, to assist the suicide of someone with a mental health problem would be to abandon hope, to accept that there is nothing that can be done about the person’s own hopelessness. ‘Faced with utter despair I could understand the wish to want to help someone end their suffering, but it’s such a final ending. I would still see my job as a psychiatrist as about understanding a person’s despair and what has led to it and to try to support the development of hope. That is what we need to be challenging – that absence of hope. There is a culture of hopelessness among professionals working in very resource-strapped services and it’s very easy to get into that mindset because we feel hopeless about the services we are offering, the culture in society and levels of exclusion and stigma. I not infrequently feel quite hopeless but you need to be careful not to put that onto patients, not to let it influence how I am with patients who are feeling hopeless.
‘We as a profession need to do a lot more thinking about the nature of hope, what enables people to have hope and what leads people to feel so hopeless, and that is about understanding our culture and context. It’s not just about disease. It’s feeling wanted, a valued citizen; it’s about social inclusion… The wider aspects of people’s lives need attention.’
Dignitas says that no more than six people a year, on average, choose assisted death with Dignitas in order to end their suffering due to mental illness. Indeed, says Luley, Dignitas prevents far more suicides than it assists, which explains why it sees itself as a suicide and suicide attempt prevention service. ‘People with suicidal ideas tell us again and again, they have negative experience of being “treated” with medication, being sectioned, not being taken seriously, their GPs not having time to listen and so forth. It may sound absurd, but in order to successfully prevent suicide, and prevent the much higher number of suicide attempts, one has to upfront accept suicide as a fact, as one of a number of options humans can take as to end their own suffering. ‘
‘Our bottom line is suicide is OK but it should be an accompanied suicide, as Dignitas does it, which includes an evaluation of the reasons for suicide, discussion, time and involvement of the loved ones of the person who wants to go,’ Luley says. ‘We offer a space in which suffering people can discuss those issues. The counselling we do is very non-scientific, non-psychotherapeutic, non-psychiatric. Are palliative care experts afraid they will earn less money if a patient says, “Thank you doctor but no thank you. I would rather take a different route?” Is it the same for psychotherapists? Or is it an ego problem: “My patient does not need me any more and I cannot control his fate any more”? If you look deeper into the issue, there are signs of an unhealthy mix of money, paternalism, egos, conservative religious ideas, taboo.’
Soul midwife Felicity Warner’s work is all about accompanying people to the very end of life. She developed the profession some 20 years ago and there are now around 400 soul midwives in the UK and increasing numbers in the US and Australia. She works in hospices and as an independent practitioner with individual clients. Mostly, she says, they tend to be people who do not have a close family or social network. ‘The most important part of our work is listening, witnessing and hearing. It’s almost a priestly role.’ She shares Louis Heyse-Moore’s concern that more attention should be paid to the spiritual dimension. ‘Dying isn’t just a physical process. It’s psycho-spiritual. I don’t think we even have the vocabulary to talk about that. Even priests seem quite reluctant to talk about these issues.’
She has discussed assisted suicide with her soul midwife peers, and most, she says, would not feel able to sit with someone who was actively taking their own life. ‘We obviously work very strictly within the law, but we have discussed hypothetically what we would do if we were asked by someone to accompany them to Switzerland, to Dignitas. Some soul midwives said absolutely not and others that, if it were the person’s choice, it might be the right thing to do. But for me it goes against the ethos of soul midwifery and I would say 98 per cent of soul midwives would agree.’ To take one’s own life, however calmly and deliberately, is to artificially cut short a natural process, she argues. ‘We believe that if someone is well supported they should be able to surrender naturally to the process and die very naturally and, hopefully, with ease and without anxiety and fear. Obviously it can’t always be like that but that is what we hope to achieve. It’s part of life to go through the process of leaving it. We need to honour that.’