“I believe passionately that any individual should have the right to choose, as far as it is possible, the time and the conditions of their death. I think it’s time we learned to be as good at dying as we are at living.”Terry Pratchett
On the surface it seems so very simple. Human beings have the right to choose – end of story. If we can control every other aspect of our lives – where we live, how we spend our money, who we decide to marry – then surely we have the right to end our own lives whenever and however we choose. “Whose life is it anyway?”
The philosophers call this the principle of “autonomy”, a word derived from the Greek “auto-nomos”, meaning self-rule, or more crudely, “I make my own laws”. Some experts in medical ethicists have argued that the principle of autonomy has become the single most important principle in all medical decision-making. Every and any other consideration must take second place.
Autonomy is the principle behind patient choice, the touchstone of modern healthcare. It is enshrined in the Patient Charter, the NHS Constitution, the Mental Capacity Act and in General Medical Council guidelines for doctors. It is the patient who should be at the centre, choosing and controlling what treatment should be given. And given that we have the right to make choices about every other aspect of our medical treatment, why do we not have the right of self-rule when it comes to when and how we die?
Here’s philosopher AC Grayling:
“I believe that decisions about the timing and manner of death belong to the individual as a human right. I believe it is wrong to withhold medical methods of terminating life painlessly and swiftly when an individual has a rational and clear-minded sustained wish to end his or her life.”
John Harris has a slightly different take, arguing that shaping our own lives for ourselves is what gives value to our own existence. “Autonomy, as the ability and the freedom to make the choices that shape our lives, is quite crucial in giving to each life its own special and peculiar value.”
Others have argued that each life should be like a beautiful novel. Any individual’s way of death should fit with how that person has lived the rest of their life. Otherwise a bad death might mar the whole story of a life, just as a bad ending can ruin a beautiful novel. If I have lived my life by choosing, taking responsibility for my own existence, telling my own story, then I must be free to end my life in my own way, in a way that fits.
I am the captain of my soul
This attitude of self-mastery is portrayed most vividly in the Victorian poem Invictus, which has been adopted by several prominent politicians, including Nelson Mandela.
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.
— William Ernest Henley (1849 – 1902)
These high-flown sentiments resonate with many in our society. If I am genuinely the master of my fate, then surely that must mean I have the right to choose to end my life.
The individual is king
This modern fixation can be traced back to the Enlightenment philosopher John Stuart Mill. In his 1865 book On Liberty he wrote “The only purpose for which power can be rightfully exercised over any member of a civilized community against his will, is to prevent harm to others . . . Over himself, over his body and mind, the individual is sovereign”.
The wording is significant. There are other sovereigns in the public or political realm, but in private life and morality the individual is sovereign. In eighteenth century Europe the political concept of the sovereign nation-state was being developed. In Mill’s thought each individual becomes their own nation-state with their own sovereign in absolute control. From the perspective of traditional Western thought freedom was an essential precondition for people to choose what is good. But in modern liberal societies it is choice which becomes a good in itself – in fact, for many it is the supreme good.
Philosopher Ronald Dworkin argues that individual control over the manner and timing of our death is of central importance to everyone. “Death has dominion because it is not only the start of nothing but the end of everything, and how we think and talk about dying – the emphasis we put on dying with ‘dignity’ – shows how important it is that life ends appropriately, that death keeps faith with the way we want to have lived.” He argues that we worry about dying in indignity, “as we might worry about the effect of a play’s last scene, or a poem’s last stanza, on the entire creative work”.
“People’s views about how to live colour their convictions about when to die…There is no doubt that most people treat the manner of their deaths as of special, symbolic importance: they want their deaths, if possible, to express and… confirm the values they believe most important to their lives…..None of us wants to end our life out of character”.
Christian voices arguing for choice and control over death
Just like the argument from compassion, the argument from autonomy seems attractive to many Christian believers because it seems to chime with deep and genuine principles of the faith – here a deep concern for human freedom.
Desmond Tutu, the distinguished South African archbishop and campaigner against apartheid, stated in 2014 that laws that prevent people being helped to end their lives were an affront to those affected and their families. He condemned as “disgraceful” the treatment of his old friend Nelson Mandela, who was kept alive through numerous painful hospitalisations and forced to endure a photo stunt with politicians shortly before his death at 95.
Tutu, called for a “mind shift” in the right to die debate. “I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying. I revere the sanctity of life – but not at any cost.”
So a genuine concern for the dignity of dying people leads Desmond Tutu to conclude that they must have a legal right to end their own lives. But is self-destruction a truly dignified way to die?
Respect for autonomy in English law
Respect for individual autonomy is certainly highly regarded in modern medical and legal practice. In a landmark case, that of Miss B, the English High Court accepted that an individual patient could legally insist that life-sustaining treatment should be withdrawn. Due to bleeding into the spinal cord, Miss B, a 41 year old social worker, developed progressive paralysis from the neck down. Because of increasing breathing difficulties she was transferred to an intensive care unit and life support treatment with artificial ventilation was commenced. Treatment attempts failed and Ms B remained dependent on a mechanical ventilator. Ms B repeatedly asked the doctors caring for her to switch off the life support machinery so that she could die.
The case was referred to the High Court and in a remarkable precedent the Court held part of its proceedings within the intensive care unit so that Ms B could give evidence in person. Dame Elizabeth Butler-Sloss, the presiding judge, expressed her admiration for Miss B’s courage, strength of will and determination. “She is a splendid person and it is tragic that someone of her ability has been struck down so cruelly. I hope she will forgive me for saying, diffidently, that if she did reconsider her decision, she would have a lot to offer the community at large.”
Dame Butler-Sloss concluded that Ms B did indeed have the mental capacity to refuse treatment and that the hospital, by continuing to treat her with ventilation against her wishes, had acted unlawfully. “One must allow for those as severely disabled as Ms B, for some of whom life in that condition may be worse than death.” Interestingly, the doctors at the original hospital were not compelled by force of law to withdraw the treatment they had started, against their own conscience. Instead Ms B was moved to another hospital where, shortly afterwards, intensive treatment was withdrawn at her request and she died.
This judgement has been highly influential, confirming the right of competent patients to refuse life-sustaining treatment. But should the same respect for autonomy lead to a conclusion that there should be a legal right for patients to kill themselves?
Autonomy is not as simple as it sounds
As we saw at the beginning of this article Terry Pratchett argued that everybody had the right to control the time and manner of their death. Yet this argument is not as simple as it sounds. Was Terry Prachett really arguing that we should assist people to destroy their own lives, under any circumstances and for any reason whatsoever? What kind of society would it be that assisted people to kill themselves whenever they wished? A society that provided lethal medications for depressed individuals with suicidal thoughts, that provided humane alternative methods of self-destruction for people threatening to throw themselves off a cliff or in front of a train, that made suicide an easy process for lonely, elderly, disabled or despairing people. Is this the kind of society that is being proposed, and is this a society that we would wish to belong to?
In reality, virtually all those arguing in favour of assisting people to kill themselves add a number of additional criteria that must be met, additional barriers that must be circumvented before we will provide a legal method to assist people to destroy themselves. Here are some of the additional criteria that have been proposed:
a) The choice to kill oneself should be an enduring and persisting one
This barrier recognises that suicidal thoughts may be transitory and impulsive. In the UK the Falconer commission on assisted suicide recommended that:
“A person would only initiate the process of requesting an assisted death after considerable discussion with their doctor. ….it is important that some time should be built into the process to ensure that the patient’s decision cannot be made hastily, and that it is a settled decision to die, as opposed to a fluctuating wish…. The proposed safeguard is that a minimum time period of two weeks must elapse between the request being made by the subject, and the assisted death occurring.”
This may seem like common sense but it is an obvious restriction on the right of self-governance. If I am overwhelmed by grief and despair and wish to kill myself immediately here and now, on what logical grounds am I denied that right? Why must I be forced to endure a further two weeks of mental anguish? The demand for a “settled”, “enduring” or “persistent” decision is a recognition that free choice alone is not enough.
b) The choice to kill oneself must not be the consequence of mental illness
It is very well-known that “suicidal ideation”, recurring thoughts about killing oneself, is an extremely common symptom of depressive mental illness. The members of the Falconer commission concluded:
“Although the distinction between ‘appropriate sadness’ and depression in the context of terminal illness is complex, the Commission does not consider that a person with depression, whose judgement might be significantly impaired as a result of this depression, should be permitted to take such a momentous decision as ending their own life…”
It seems very likely that the great majority of people who choose to kill themselves out of despair, because they feel that their lives are worthless, have at least some elements of what most of us would recognise as depression, “low self-worth” or persistently low mood. But even if my choice to kill myself is a reflection of depression it is still my choice. In the Netherlands assisted suicide has been provided on occasion for those with severe and long-lasting depression. A 2015 paper in the Journal of Medical Ethics, written by two Dutch philosophers, argued strongly for the right of patients with treatment-resistant depression to be helped to kill themselves. To exclude such patients from assisted suicide was unfair discrimination.
And then there is the complex and painful issue of dementia. Suppose that I am in the early stages of dementia. I still have some degree of rational ability, but I realise that in front of me lies the inevitable prospect of progressive mental deterioration. I will never again live an independent life, there will be greater and greater demands on my loved ones and carers. If at this point I choose to make a living will, an advance directive that I wish to be killed if I become completely mentally incapacitated in the future, then surely this is a free autonomous decision which should be supported and facilitated?
Yet many supporters of autonomous choice have drawn back here. The Falconer Commission concluded:
“We are sympathetic as a Commission to those people who are in the early stages of dementia, who might appreciate the security of knowing they could specify in a legal document the circumstances in which they would like to be able to end their life, once they had lost capacity. However, we consider that the requirement of mental capacity is an essential safeguard for assisted dying legislation; therefore the Commission does not propose any legislation that might allow non-competent people to receive assistance in ending their lives.”
c) The choice to kill oneself must not be the consequence of coercion or manipulation
The rhetoric of self-determination sounds compelling from the philosopher’s chair or the politician’s rousing speech – “I am the master of my fate: I am the captain of my soul…” as the poem asserted. But in the complexities of human relationships and the play of tragic circumstances, it is not so simple. Our choices, wishes and desires are all influenced by the web of relationships in which we find ourselves. Is it possible that my choice to be killed is being influenced by the wishes of others?
The Falconer Commission recognised that there was a significant danger in this area.
“The Commission accepts that there is a real risk that some individuals might come under pressure to request an assisted death if this option should become available, including direct pressures from family members or medical professionals, indirect pressures caused by societal discrimination or lack of availability of resources for care and support, and self-imposed pressures that could result from the individuals having low self-worth or feeling themselves to be a burden on others.
The Commission does not accept that any of these forms of pressure could be a legitimate motivation for a terminally ill individual to seek an assisted death. Therefore, it is essential that any future system should contain safeguards designed to ensure, as much as possible, that any decision to seek an assisted suicide is a genuinely voluntary and autonomous choice, not influenced by another person’s wishes, or by constrained social circumstances, such as lack of access to adequate end of life care and support.”
But although this is clearly well-meaning, it is also frankly absurd. How can we ever be confident that a choice to kill oneself is not influenced by other people’s wishes or by limitations in the social support available? In the State of Oregon, in published reports between 40 and 60 % of those requesting doctor assisted suicide gave “Burden on family, friends/caregivers” as a reason.
It is common to find elderly people who are concerned that they are becoming an unwanted burden on their relatives and carers. Desiring to act responsibly and altruistically, they may come to perceive that it would be better for everybody if their life ended. There is a deep and tragic irony that it is precisely those elderly people who are most sensitive to the needs and concerns of others who may be most at risk of being emotionally manipulated into taking their own lives.
And can we or others always detect the covert influences and emotional factors which lie behind our choices? In the words of Nigel Biggar, the notion that we are all rational choosers is a flattering lie told us by people who want to sell us something. If Freud has taught the heirs of modernity anything, it is the uncomfortable truth that much of the time we are influenced and motivated by social and psychological forces that we barely understand.
d) The choice to kill oneself must be “rational” or “well-founded”
Even if our choice is persistent, not arising from mental illness and genuinely free, another barrier has been constructed which we must circumvent if we are to receive assistance. Our decision to die must be “rational”. But what exactly is a rational reason to destroy your own life?
Since many philosophers conceive of death as the cessation of all autonomous action, there is a certain irony (if not logical incoherence) in the idea that the triumph of autonomy should lead to the premature destruction of that self-same autonomy. Surely those who wish to promote autonomy as the supreme good should oppose the squandering of this ultimate value in self-destruction.
Both the USA and the UK have turned against mercy killing by doctors in favour of assisted suicide. This Anglo-Saxon model has assumed that the only acceptable rational reason to wish to die is terminal illness, that is the apparent certainty that natural death is only a matter of weeks or at most months away. The Falconer Commission stated that the only people who would be eligible would be those who had an advanced, progressive, incurable condition that was likely to lead to the patient’s death within the next 12 months. This was subsequently changed in the Assisted Dying Bill of 2014 to a reasonable expectation of death from a terminal illness within 6 months. The change from 12 to 6 months illustrates the arbitrariness of this vital definition for the proposed law.
Every experienced doctor knows that predicting life expectancy is fraught with uncertainty, and failed predictions are frequent and inevitable. But leaving this practical problem aside, it seems strange that the only rationally acceptable reason for killing oneself is terminal illness.
Problems with defining rational reasons for suicide
If we once accept that there may be rational reasons to wish to kill yourself, then many might argue that severe, continuous and intractable physical suffering provided a more understandable reason than the knowledge that you were going to die anyway within 6 months.
The UK Falconer Commission on assisted suicide explicitly rejected disability as grounds for assisted suicide. Since this is a critical issue it is worth re-examining the wording of their report:
“The intention of the Commission in recommending that any future legislation should permit assisted suicide exclusively for those who are terminally ill and specifically excluding disabled people (unless they are terminally ill) is to establish a clear delineation between the application of assisted suicide for people who are terminally ill and others with long-term conditions or impairments. The adoption of this distinction in any future legislation would send a clear message that disabled people’s lives are valued equally.”
But this seems rather strange. Disabled people’s lives are valued equally (and hence they are protected), but terminally ill people’s lives are not valued equally, and hence they may be killed. It’s hard to see a logical and rational basis for this distinction.
It is possible to construct many other apparently rational grounds for wishing to kill oneself. The desire of an elderly person to cease to be an expensive burden to his or her children, the wish of someone facing progressive dementia to find a way out, or the elderly and lonely person who is merely “tired of life”; all these motivations seem rational in some sense.
So the restriction of assisted suicide to those who qualify under an arbitrary definition of terminal illness smacks of political expediency. In private, many pro-euthanasia campaigners will agree that they regard the proposed legislation as merely the first step in a future programme of progressive liberalisation of the laws governing the end of life. Once the principle is accepted that some lives can be killed on rational grounds, then it is hard to see a logical basis on which progressive liberalisation can be resisted.
Individualism – I am at the centre of the universe
The argument for autonomy rests ultimately on a profound individualism which stems historically from the European Enlightenment. In the nineteenth century vision of John Stuart Mill, each person is like a nation state with a single sovereign. Human communities represent a kind of United Nations in which we enter into alliances, contracts and disputes between sovereign state/individuals. But this is a terribly bleak vision of society, one in which a collection of individuals are making autonomous choices, striving for their own goals. Although Mill emphasised the requirement not to cause harm to others, this moral vision so easily reduces to an infantile “I do whatever I like and no one is going to stop me…” Welcome to the ethics of the kindergarten!
Fear of dependence
The emphasis on individual choice as the ultimate expression of my identity and self-worth leads on to a deep fear, the fear of dependence. Once I depend upon another, then the heroic individualism of Invictus comes crashing down. Dependence is threatening and dehumanising precisely because it threatens my sense of identity, my sense that my life is worth living.
People who have lived their lives as an expression of self-determination and self-reliance are horrified by the prospect that their death might express a completely contrary reality of dependence on others. Instead, they want to be free to die as they wish, even if that form of dying is not what others might wish.
Is sudden death the best way to go?
One way many modern people cope with deep-rooted fears about dependence and indignity at the end of life is to hope for a rapid and unexpected death. To many previous generations, sudden death was seen as one of the worst ways to die. To be catapulted into eternity without preparation, without a chance of asking forgiveness for past failings, unable to say goodbye to loved-ones, unable to make provision for those who remained, this was viewed with horror by our forebears. Some saw sudden death as evidence of God’s judgement on a godless life. But to modern people sudden death has become the ideal. The catastrophic accident, the sudden cardiac arrest: “Well at least he went quickly, never knew what hit him, lucky beggar. I hope I go like that.”
In reality a good death is not necessarily a sudden death and paradoxically many people have discovered that the last days of a life can be the richest, the most intense and the most significant.
But if we do not go quickly, if we have to face a slow, protracted dying, then many people want to be killed or to kill themselves. That way, they do not need to be afraid. They can relax. Provided that euthanasia or assisted suicide is there as an option, they can face their death with equanimity. There will be someone there to help. This seems to be the answer to our deepest fears.
Respecting the rights and needs of others
It is clear that there is a resolute minority in our society who wish to claim their autonomous right to kill themselves at the time and the manner of their choosing. But in a humane and just society we must balance their individual rights against the risks of collateral harm to a large number of other individuals.
It is important to remember that only a tiny number of people in the UK travel abroad for assisted suicide compared with the hundreds of thousands of people who receive medical care at the end of life each year. It is undoubtedly true that there are a large number of older and frail people, who want to carry on living despite a terminal diagnosis, but who are vulnerable to wondering whether ending their own life might be a mercy for their relatives and care-givers.
Despite the modern emphasis on individual rights it is widely recognised that in a civilised and humane society my rights of individual autonomy must frequently be curtailed to respect the needs and vulnerabilities of others. My autonomy as a driver is constantly curtailed by the need to respect traffic laws in order to protect others. My autonomous right to freedom of speech in a public place is curtailed by the legal requirement to avoid hate-speech which will damage others. If I contract a highly lethal infection such as Ebola virus, my right to be free to travel is legally curtailed for the good of others.
So it is surely reasonable that the autonomous desire of a small number of resolute, vocal and determined individuals to have a legal and medically supervised means of killing themselves may have to be curtailed if it exposes large numbers of vulnerable people to the risk of lethal harm. The individual autonomy of a few cannot and must not trump all other considerations.
This article is adapted from material in my book Right to die? Euthanasia, assisted suicide and end of life care. You can find the rest of my material on euthanasia and the end of life here, including my other introductory essays.