I like to think that I am in control of my life and get very frustrated when this control is taken away, even in trivial ways: when train delays make me late, when I am waiting for an interview panel to decide whether to employ me or when a relationship ends and I am on the receiving end of the “it’s not you, it’s me” speech. I often wonder how I would react to something more serious and substantial being taken out of my control. Something such as my health, my independence or my autonomy.
Autonomy and rights are a common focus of discussion, especially as we have moved from a paternalistic to a partnership model between the doctor and patient. Such issues have become central to the debate surrounding physician-assisted suicide and assisted dying. Do we have a right to choose the timing and manner of something so fundamental as our own death? To what degree do the wishes of an individual have to come second to the perceived adverse effects on society?
In a landmark, and now famous, case heard by the Law Lords in 2009, Debbie Purdy contested that the 1961 Suicide Act constituted an interference with her rights, within the context of her private life, under article 8(1) of the European Convention on Human Rights. She argued that she had a right to decide to kill herself, that this was part of her private life, and that this right was infringed upon by the 1961 Suicide Act. The Lords ruled in her favour. This did not, however, change the law; encouraging or assisting suicide still carries a sentence of up to 14years imprisonment. As a result of this ruling the Director of Public Prosecutions (DPP) was forced to issue new (interim) guidance on who should be prosecuted. This guidance concentrated not on the health of the victim as may have been expected, but on the motivations of the suspect – for example, clear evidence of compassion mitigates against prosecution. So we now have a situation in which current law acknowledges that a person has a right to a private life, and that this extends to the decision to end their life, but that assisting another person to do this is illegal. However, if assisted suicide is thought to have taken place but to have been done for compassionate reasons and not for personal gain a prosecution is unlikely to be pursued (none of the 31 cases brought to the attention of the DPP since Feb 2010 have been prosecuted).
Some have argued that this situation is appropriate and that current law has “a stern face but a kind heart.” They argue it maintains a necessary hard line against any attempt to end a life, but allows for understanding and individual circumstances to be taken into account when rulings take place. However, those who have had experience of this process do not feel it is fit for purpose. It leaves relatives, friends and doctors with the threat of criminality hanging over them as they struggle to make difficult decisions, with compassion and dignity. One of the necessary factors for not prosecuting is that the person assisting in the suicide does not benefit from the death, but it does not define what would constitute a benefit. As Debbie Purdy points out, if her husband inherits half of their house has he benefited from her death? It also perpetuates an inequality that those who are physically able can end their own lives, either themselves or by travelling to Dignitas, but those who have progressive diseases that leave them physically disabled cannot. They may decide to take their own lives earlier than they would wish to “before it’s too late”. Furthermore we have, as a society, accepted assisted suicide and do not stop those who wish to do so travelling to Dignitas in Switzerland. It is indefensible to export our moral dilemma abroad.
When we talk about the morality of assisted dying or euthanasia we often consider the difference between acts (eg injecting a lethal dose of drug) and omissions (eg removing a patient from a ventilator and “letting them die”). There are those that see these as morally distinct but Shaw, amongst others, argues that despite the fact that legally the two cases would be treated very differently (possibly a charge of murder in the first case) there is no moral distinction. He goes further and considers how we define death and its implications. “If we agree that brain death is the end of a person, we should adopt brain life as the central aspect of personhood in terminal patients and accept that the body is merely another type of life support.” If this is the case, then “turning off” that life support via the mechanism of active assisted suicide would be ethically permissable. Such examples and comparisons are helpful in highlighting the inconsistencies in our initial “gut feelings.”
Throughout all of these difficult debates we must be very clear as to our definitions. The call for a change in the law relates to “assisted dying” which specifically applies to ending the lives of those with terminal disease. This is different from “assisted suicide” which includes those who are not thought likely to die within the next 12months but who may have other reasons for wishing to end their life. There are some, such as Jacob M Appel (a bioethicist) who believe that all competent adults have a right to end their own lives, and that the right to die is a useful test of the overall freedom of a society. There are not many who share his view and this is not what is being proposed. Importantly the current proposals for a change in favour of assisted dying would not help Tony Nicklinson, who is currently fighting a legal battle for his right to die. After suffering a massive stroke he is paralysed below the neck and can communicate only by blinking or through limited head movement. He has, on numerous occasions argued that his existence is undignified, intolerable and that he is in constant suffering. This is not the view of every paralysed patient but this is not the point: the only person who can decide on whether they have quality of life is the individual. Tony Nicklinson successfully articulates his wish for autonomy:
“By all means protect the vulnerable; by vulnerable I mean those who cannot make decisions for themselves. Just don’t include me. I am not vulnerable. I don’t need help or protection from death or those who would help me.”
The judge was absolutely right when he said the underlying issues in the case “raise questions that have great social, ethical and religious significance and they are questions on which widely differing beliefs and views are held, often strongly”. Care not Killing and Dignity in Dying are just two campaign organisations on opposing sides of the debate. Tony Nicklinson is now seeking a declaration by the High Court that “it would not be unlawful on the grounds of necessity for Mr Nicklinson’s GP, or another doctor, to terminate or assist the termination of Nicklinson’s life”.
The Commission on Assisted Dying, which published its report earlier this year, took into consideration many valid fears including a slippery slope effect widening an initially narrow scope of the terminally ill to other patient groups; concern that the vulnerable would be coerced into decisions they would not otherwise choose; objections by doctors, who had concerns about a change in the doctor-patient relationship, or who would not want to be part of the process on moral or religious grounds; and wider concerns about what is deemed to be a good quality of life and who decides, including concerns from Disability Rights groups. The Commission’s chair Lord Falconer feels that a workable solution has been found and that it is time for a change in the law. Stringent safeguards, regulations, and monitoring have been proposed that should stop us using fear as an excuse to move forward with the debate.
Personally, my views on these issues have changed over time. I hope to remain in control of my own destiny, to the extent that this is possible, until the day I die. I certainly do not want others placing a value on my life and determining whether it has an appropriate level of quality. These are things only I can decide. As a physician I am a passionate believer in the value of high quality palliative care, and its ability to give people a “good death”. But I also believe that there are a group of people for whom no amount of drugs or counselling will alleviate their suffering, and who want a compassionate alternative to a life they feel is unbearable.
Putting personal views aside, there is an urgent need for greater public engagement with these difficult issues. The voices of those wishing to end their lives grow louder and more numerous. There must be open and honest public debate, scrutiny of the findings of commissions, and legislation in accord with the realities of living and dying in the twentieth century. Science and society have moved on; our ethics and laws must catch up. The medical profession needs it, patients deserve it, and the public demands it.