When it comes to dying and death we live in a Victorian world. Our thinking and behaviours about how we should die are conditioned by laws passed and largely unchanged since the life of Queen Victoria. In the Australian Capital Territory the legislation on assisting suicide is outlined in sections 17 and 18 of The Crimes Act 1900. One attempt to amend it was made in 1997 after the Euthanasia Laws Act was passed by the Commonwealth. A bill was introduced which proposed that the penalties for assisting the ‘suicide’ requested by a terminally ill person should be reduced to a fine. The bill did not pass.
The Crimes Act 1900 in the Australian Capital Territory specifies in section 16 ‘The rule of law that it is an offence for a person to commit, or to attempt to commit, suicide is abolished.’ However sections 17 and 18 state that ‘a person who aids or abets the suicide or attempted suicide of another person is guilty of an offence punishable, on conviction, by imprisonment for 10 years.’ A person ‘who incites or counsels another person to commit suicide and the other person commits or attempts to commit, suicide as a consequence of that incitement or counselling is guilty of an offence punishable on conviction, by imprisonment for 10 years.’ It is also ‘lawful for a person to use the force that is reasonable to prevent the suicide of another person or any act that the person believes on reasonable grounds, would, if committed, result in the suicide of another person.’ The double standards in these laws must be evident to anyone who thinks through the consequences of these laws. It is no longer a crime to commit suicide but no-one can help the suicide to do it. The consequence for the terminally ill is that no doctor will help them except to give symptom relief. The consequence for suicides is that they are forced to hang, gas or shoot themselves and the consequence for attempted suicides is that they are left untreated and unsupported.
How assisting a dying person to die can be equated with assisting suicide is a mystery to me. According to this law, terminally ill people diagnosed with only months, weeks, days or hours to live are still deemed to be committing suicide if they take action to end their lives. No matter how much physical or existential suffering a person is enduring, this law requires us to maintain the illusion that we are not interfering with the ‘natural’ processes of dying and death. While intervention in the process of birthing is regarded as normal and has long been (caesarean sections have been performed for thousands of years), we still do not have the courage to support dying appropriately. In truth medical interference in dying can be extensive as long as it keeps the patient alive.
Our obsession with a ‘natural’ death seems to be related to a desire to establish that we were not murdered, the ultimate insult, or that we did not commit suicide or self murder, the ultimate shame. Loss of life, however it occurs, is a serious problem for human beings. We think that it is a tragedy. This attitude towards death is a problem for those who have the misfortune to have aged and faced death as well as for that minority who wish to die early by suicide.
It seems to me that death is the ultimate freedom. All other freedoms pale beside it. Certainly, if we actually had all the freedoms we would like, life would be much better than it is. However the Universal Declaration of Human Rights and other human rights declarations which call for freedoms from persecution and free societies are really ambit claims; they are not reality. And, regardless of the society we live in, whether it is free or not, we are all bodies. Like all living things we are programmed to die. Our bodies are inevitably going to break down however slowly that process occurs. Death is not a disease; it is the inevitable end of life whatever the conditions in which any given life occurred. Death is a liberator from suffering.
Imagine yourself immolated in the flames of a funeral pyre and you know that you will feel nothing. A dead body can be piled high with funeral goods and drowned; it can be exposed to the elements and pecked clean by scavenging birds; it can be bound mummy-like and entombed. It can be left to scientists to pick over for the bits that can be re-used or exposed and pulled apart on television to the prying eyes of millions of curious viewers so that they might have a better understanding of the body; any of this can happen and it will feel nothing. Insult it how you like and it will still feel nothing. More wonderful than this, Bill Bryson in his A Short History of Nearly Everything writes that when we die, the billions of atoms that we are made up of ‘will disassemble and move off to find new uses elsewhere – as part of a leaf or other human being or drop of dew’. ‘Atoms themselves, however, go on practically for ever.’ What could be better than this as an outcome of death?
Debate about assisted dying erupted in Australia with the passage of the Rights of the Terminally Ill bill in the Northern Territory in 1996. The bill was challenged by two pro-life campaigners in the Supreme Court of the Northern Territory who argued that the law was not valid, as the territory did not have the legal power to make a law that would allow the taking of a life. On 24 July, the judges dismissed this challenge by a majority of 2 to 1. They agreed the law was valid and constitutional. An appeal to the High Court also resulted in the law being declared valid. The only way the Northern Territory could be stopped from providing its citizens with an assisted death was by the Federal Government passing a law the 1997 Euthanasia Laws Act to prevent Australian territories from making laws on Voluntary Euthanasia. Before this and since, people across Australia, including doctors, have mobilized to change the laws preventing assistance to dying people.
Doctors, however, are themselves divided about whether they want to participate more actively in the dying of their patients. Most doctors conform to what society wants. They tell themselves that they are not ‘killing’ their patients when they terminally sedate them. Those who want to maintain laws that prohibit assisted suicide condone this behaviour by consoling themselves that deaths that are far from ‘natural’ are natural because the death occurred following the use of drugs not specifically designed to end the patient’s life. Doctors have to control their responses to the dying. The impulse to assist the passage of a person from life to death is blocked by the threat of severe legal penalty. A 60 year old woman found herself helpless in the face of hospital staff who would not support her 92 year old father terminally ill father to die despite his stated insistence that he did want to be resuscitated and agreement between his children that his wishes should be respected. This scenario occurs because doctors fear that they will be accused of assisting a death. Nevertheless, in the call for assisted dying some doctors are leading the charge. Some doctors witnessing the dying of their patients are increasingly alerting us to the need to change our thinking about how we die by writing books, forming organizations, making films and writing articles to inform us about what will happen when we die.
Those wanting to maintain laws that prohibit assisted suicide believe that doctors will murder ‘vulnerable’ older people susceptible to the idea that they might be a burden to society or their loved ones. They believe that the law can never close all possible loopholes to protect those assisted to die. They are afraid of relatives motivated by greed. Others believe in the ‘sanctity of human life’ which must be preserved at all costs and ‘human exceptionalism’. These beliefs are not held by the majority of Australians but they are held by the majority of parliamentarians.
While ordinary Australians deal with the ‘natural’ dying of their relatives, politicians live in a fantasy world where miracles will be found to cure the diseases of old age and death. The consequence of beliefs like this is that people who are dying now will have to wait until there are cures rather than be helped to die. There is no doubt that medical treatments have helped many people who would otherwise have died earlier in the past, but there are no cures for the many illnesses of old age.
Some politicians imagine that legislation for an assisted death will suddenly turn people against those with disabilities; that legislation will result in the ‘termination’ of people who are undesirable. They deny the fact that increasing numbers of legislatures around the world are successfully making safe legislation that allows assisted dying. After witnessing some of the debate in the Senate in Parliament House on Senator Bob Brown’s bill to repeal the 1997 Euthanasia Laws Act last year I walked out with a security guard who remarked, ‘They don’t know what they’re talking about. I’ve had 5 members of my family die of cancer. I was 7 when my father begged me to help him die.’
Even though only .6% out of our twenty two million plus population, a mere 140,760 people died in Australia in 2009, a majority of Australians approve of assisted dying for a terminally ill person. Is this because, when they are exposed to the dying of their loved ones, they do not like what they see? My experience of talking to people about the dying of their loved ones leads me to conclude that this is the case. Here are some of their stories. A 55 year old man witnessed his demented father defecating on the floor in a hall of the nursing home in which he was being for and later saw that he was about to be hooked up to intravenous feeding to extend his life, like the three other men in the ward with him, when he mercifully died. An older woman watched her mother take over a week to die in a morphine induced coma as her organs slowly collapsed. Her anguish at her mother’s slow dying was such that she contemplated smothering her but stopped herself knowing that she would be deemed a ‘murderer’ if she undertook such an action. An older woman in her sixties watched her father take 9 months to die after he became demented and then, ‘a vegetable’. He was a man who had run a government department. A woman successfully assisted a friend to die. The friend had been hooked up to a ventilator. When the ventilator was removed by the woman death occurred before the hospital staff could get to her friend. Until her intervention, the hospital would not allow her friend to die. A middle aged woman had to resist the request of her father to help him die. He took 6 weeks to die. A woman whose father died slowly over two months in a nursing home saw that he needed oral care and the nurse scraped away the debris in his mouth but did not clear it from the back of his throat. He died two days later; she feared that he had been choking on the debris in his mouth when he died. A woman whose mother slowly deteriorated over years, gradually losing her hearing, sight and her mind cried, ‘Her quality of life was terrible.’
The 2000 or so Australians who successfully suicide each year have to fling themselves off bridges, gas themselves, hang themselves and so on. In a civilized, otherwise generally peaceful society, one has to question the law that forces people to take such desperate actions. Surely it is the law that is criminal.
The Senate Committee Report The Hidden Toll: Suicide in Australia reported that many people do go to their doctors before they make the decision to commit suicide. They say nothing to them about it but hope that the doctor will ‘pick up’ how they are feeling. Saying to a doctor ‘I want to die. Will you help me?’ is not an option because the doctor will say ‘no’ knowing that the penalty for assisting death is years in gaol.
The other consequence of current legislation prohibiting assisted suicide is that our society is silent about the estimated 60,000 who attempt to commit suicide. While they are only estimates, these numbers indicate that wanting to be dead is a pretty ‘normal’ desire. The Hidden Toll: Suicide in Australia indicates that silence and stigma about suicide is very great. There is no doubt that many people are suffering as a result of laws prohibiting assisted suicide. Three groups cannot access a health measure that should be available to them; those who are dying (over ninety percent older people), those who decide to take the plunge and elect death (half over the age of 50 and the highest rate occurring in men 85 and over (ABS Australia)) and those who attempt to do so. These laws result in cruel, inhuman and degrading treatment of these groups of people.
For those at the end of life politicians have approved laws which can include the right to withdraw treatment and for the provision of pain relief. If as a result of this treatment death occurs, doctors are protected from prosecution. They are protected, even though in prescribing morphine to suppress pain, they know full well that this treatment will result in the death of the patient. Terminal sedation can make dying take a long time.
For those who just want to be dead there is no relief. Their wishes are not respected; they are treated with contempt by our society. There is a terrible fear of suicide, rather than an acceptance that it is a normal human response to the difficulties of life. The Hidden Toll: Suicide in Australia at no stage addresses the legislation prohibiting assisted suicide around the country. Rather than accepting that some people will want to die, recommending the repeal of the laws and provision for assisted dying in hospitals, it floods us with recommendations that do not confront the basic issue. Laws prohibiting assisted suicide hide a serious health epidemic that needs to be dealt with as a health issue between doctors and their patients. Does a civilized country allow people to die in agony, hang themselves, or shoot themselves? Does a civilized country live in a dream world pretending that everyone loves life and that no-one suffers terminal or incurable illness? Does a civilized society think it is appropriate or right that even though we have long rejected capital punishment, over 1000 people hang themselves in this country each year? It seems that the answers to these questions are that it does. Another answer to these questions is that we are not yet civilized or mature enough to face the ultimate challenge, the challenge of taking charge of when, where and how we die.
In Switzerland the law states that “Suicide is not a crime in modern criminal law and there is no suggestion from the people we should return to previous law. Furthermore, the counselling and aiding of a person to suicide can be an act of compassion. Hence, prosecution will ensue only if the counselling and aiding of suicide proceeds from selfish motives, such as when a perpetrator seeks to gain an inheritance or terminate his giving of care.” This law has been in place since 1942.
Ludwig Minelli, the director of Dignitas, a suicide clinic for the terminally ill in Switzerland, states in an open Internet letter,
Has the availability of assistance led to large numbers of people choosing suicide in preference to natural death? Well, Georg Bosshard with others from the Institute of Legal Medicine of the University of Zurich published a study of 748 suicides that were assisted by EXIT in Switzerland over a period of eleven years from 1990 to 2000. He compared the total number of deaths in Switzerland to the total number of assisted suicides by EXIT over those eleven years. Of 100’000 persons who died in these eleven years from cardiac or respiratory disease, only 67 (.07%) chose assisted suicide. Of 100’000 persons who died from Multiple Sclerosis, only 45 (4.5%) chose assisted suicide. These figures (and similar figures released annually in the state of Oregon USA) show that when assisted suicide is legalized, only a small minority will actually use it. (Figures from Oregon USA show that not only is it a small minority but one composed mostly of persons suffering from cancer, motor neurone disease, AIDS and Multiple Sclerosis. These are the particular diseases that too frequently bring on unbearable suffering.)
In 2001, the City Council of Zurich ruled that organizations such as EXIT and DIGNITAS could attend the homes of old or sick people run by the City of Zurich to give assisted suicide when requested. Only recently I asked the Chief physician of the City of Zurich, Dr. Albert Wettstein, how many people live in these institutions and how many cases of assisted suicide have occurred in the last few years. He informed me that about 3’000 people live in these homes and there are no more than three assisted suicides each year. (I am aware that the actual figure might be slightly higher because an EXIT official, Werner Kriesi, told me that in 2004, three persons – all members of EXIT – came from these institutions to the EXIT house to die because they did not want to go through the official bureaucracy in the home.) Whether the actual figure is three or six per year, it amounts to a very small percentage.
Our experience at DIGNITAS is that 70 percent of our members who approach us for assisted suicide never call again after we have told them that a Swiss physician is ready to write a prescription for them.’
If we were to repeal our outmoded, cruel, and inhumane laws prohibiting assisted suicide and provide for an elective death on the Medicare Schedule doctors would be able to acknowledge and respond appropriately to the suffering experienced by their patients. They would be able to say to their patients that they could help them to die if that was ultimately what they wanted. They could discuss openly and rationally with the suffering person the best treatment, the best first steps such as psychiatric treatment, psychological and/or financial counselling, or medications and then ultimately, if wanted, the final treatment of a lethal ingestion of a legal drug, sodium pentobarbital providing a peaceful, pain free, quick death. As indicated by Minelli in his letter in repealing laws such as this we take the risk only that probably no more people than currently die each year would take up the option of electing death. The advantage would be that those suffering silently in our society would be given appropriate support not the denial and hand wringing they are currently offered.
The well-being of society is the fundamental motivation of good government. However our society is less safe and more saddened as a result of exposure to violent suicide and the painful deaths of some of the terminally ill. Despite the fact that very few people in our society die in any given year, very few need assistance to die, and that there are very few suicides, death impacts on everyone. People overwhelmingly are motivated by the desire to ease the suffering of those who are terminally ill and everyone is horrified by the idea of the violence of suicide, yet Australian governments maintain laws that are directly responsible for this situation as if they have nothing to answer for.
It is no longer acceptable or appropriate for Australian society to allow people to die badly in any circumstances. Good governments should ensure that everyone dies with dignity. No-one should be excluded from having a good death. One sign of a good health system would be a good death, i.e. a peaceful, pain free and quick death.
As Minelli notes, in Swiss law helping others to have a good death is a compassionate act. A sign of a civilized society is that it respects the rights of its citizens to die at the time of their choice. Like birth, death should be deregulated. Like birth, death should be a matter for the individual supported by the state.
A new approach to suicide and assisted dying is required to allow citizens to be responsible for the manner, time and place of their deaths. One way to make this change would be to rename suicide and call it elective death. Governments and other relevant institutions could promote the idea that elective death is a solemn, considered act which should be respected. Elective death could be recognized as a legitimate goal that some people have for themselves and would be defined as a voluntary decision made to shorten a life.
Australian governments could establish well publicized elective death clinics with the facilities to assist those wanting an elective death to die comfortably in their local hospitals. They could maintain records of the reasons for people requesting an elective death and report regularly on their findings. This would reduce the incidence of what Minelli calls ‘Do it Yourself’ suicide and would enable governments to monitor the reasons for people choosing early death. Having the resources to provide the best financial, relationship and personal counselling available to clients – as well as immediate access to police, the coroner and funeral services – elective death clinics would be likely to reduce attempted and achieved suicides rates by addressing seriously the desire to die.
Support for an elective death would be given to any adult Australian citizen after provision of a reason for the wish for death and following offers of help through counselling and police assistance as needed, if people changed their minds about dying. The decision to die would be respected as would the decision to live. Governments could co-ordinate public and private health systems to link into the elective death clinics in the area.
Acknowledgement of the desire to die is a twenty first century way to deal with suicide. No modern professional psychiatrist tells a suffering person to ‘Take a Bex, have a nice cup of tea and a good lie down’, although in maintaining laws that prohibit assisted suicide, we are just as negligent as any psychiatrist would be who said this. Denying and suppressing people’s thoughts and feelings is not the solution to their problems. We now accept and, most of us celebrate, women voting and working, men doing their fair share in the home and showing their feelings, homosexuality and gay marriage, contraception, fertility clinics, varied dress codes, abortion and divorce, medical and scientific advances, safe birthing. These are all changes that would have been unthinkable one hundred years ago when legislations prohibiting assisted suicide were first passed.
We no longer live in the Victorian era. Attitudes towards dying have changed for the majority of people. It’s time to live in the present, to bring the reality of everyday end of life dying, suicides and attempted suicides into the light. We need to repeal legislation prohibiting assisted suicide with its punitive, fearful, moralizing underpinnings and deal with assisted dying as a health issue to be discussed and resolved by patients with their doctors. Taking charge of our dying is the mature, adult thing to do. Adults make decisions all their lives but one decision that Australian adults are currently prevented from making is choosing how, where and when to die. Like other old ideas that have had their day, laws prohibiting assisted suicide should be allowed to pass peacefully away.
Jeanne Arthur
Dying With Dignity ACT
December 2011