The state and the right to die
Wednesday was a momentous day for Victoria. It was a momentous day for Australia. November 22, 2017, will be remembered as the day the Voluntary Assisted Dying Bill passed through the Legislative Council. It will return to the Legislative Assembly to ratify some minor amendments, but its passage into law is assured.
This is a victory of the people over the church, of secular views over dogma, of human rights over religious constraint, and of empirical evidence over fear and doubt. The bill allows, very simply, for people who are terminally ill and suffering intolerably to ask a doctor for assistance to die. The experienced, trained doctor, supported by a second such doctor, must ensure that the person is competent, is making a persistent request, is fully informed and not under duress. Then, for the first time in this state, they can act legally on the wishes of their patient.
There is no question that the fierce opposition to this law came from the Catholic Church and those in their hierarchy who support it, despite the views of ordinary Catholics and other Christians. These views have been shown time and again in ethical polls. The most recent poll prior to the vote was a Morgan poll showing that 87 per cent of Australians supported voluntary assisted dying, indicative of a continuing steady rise over the past two decades.
The direct choice of the Australian people in the marriage equality survey very accurately mirrored the earlier results of many opinion polls. These polls can be trusted, and there would be no social issue more strongly supported by Australians than voluntary assisted dying. The reason for this is simple – the fundamental basis of the legislation is the right to relief from intolerable and unrelievable suffering, and the right to make decisions about our own lives and deaths. That is to say, the legislation is about our autonomy.
Autonomy has been a value rising in importance since the French Enlightenment, the banning of slavery, universal franchise, the rise of feminism and racial freedom. In Australia, we have seen autonomy expressed in abortion law reform, stem cell research legislation, same-sex marriage and, now, voluntary assisted dying. It is notable that the Catholic Church has fought bitterly against all these advances in human freedom, and been rejected again and again by an increasingly secular and educated society.
The Victorian government has repeatedly stated that this is a most conservative bill, and that is true. It is administratively cumbersome, and it will be a time-consuming exercise, particularly for those in country areas. But politics is the art of the possible, and this conservatism was necessary for success. It will be essential to record circumstances where requests for assistance are rejected, in order to rationally consider legislative changes in the future. I can hear opponents screaming “slippery slope”, but reform of legislation through parliamentary debate is not a “slippery slope” – it is the result of the consideration of experience and analysis of evidence. People should be aware that, because of the administrative requirements, they will not want to delay discussions until the last minute.
The bill has a very important, yet sad, provision – its implementation will not start until June 2019. In the main, I applaud this provision, because this is a major change in medical practice about which even those doctors who support it are not yet skilled. Moreover, the public needs to be fully informed of their rights and responsibilities, and there are important administrative functions to establish, such as a review board. Very few doctors will have had the experience of providing for voluntary assisted dying, of having the necessary conversations with suffering people and their families. It is essential that doctors be properly trained to fulfil their roles under this legislation. This is not complex for the experienced doctors who will have this role, but it must be done.
My sadness at this delay is the potential for suffering of a number of people who would qualify under the legislation but may die badly before the legislation comes into effect. I hope other palliative end-of-life practices will rise compassionately to the task.
Most people will see this legislation through the narrow prism of allowing a small number of terminally ill people to end their lives prematurely in order to end their suffering. That is so, but there are a number of wider and very important outcomes to consider. Doctors have hitherto been seriously inhibited in having open conversations with terminally ill people because there was no truly satisfactory direction in which that dialogue could go, if a request for help was compelling. The door to these valuable conversations is now open, and in many instances, that conversation is all that is necessary to provide profound palliation. Previously, fear dominated the minds of many people as they went towards the end of their life – this can now be largely dispelled. This legislation empowers people to have control over the end of their life.
Going beyond all those who have a diagnosis of a terminal illness and can now have these conversations, this law will provide comfort to the whole population, who will now be aware of the potential control that has been given to them. It will generate valuable discussions between older people and their families about their broad wishes. This more open discussion will ensure that unwanted medical treatment will be avoided.
Beyond that, this law will eventually have an effect on palliative care. Most palliative care physicians have been ideologically opposed to this law. Their response to “refractory” suffering has been terminal sedation, the titrated induction of unconsciousness without food or fluids over a period of days. There is no option for voluntary assisted dying. In overseas jurisdictions, such as Oregon, in the United States, which has assisted dying, palliative care has slowly changed from opposition to acceptance of patient choice. In Belgium, palliative care and assisted dying are integrated. I am confident that the same gradual but realistic change will occur in Australia.
The language surrounding this legislation is important. Many commentators continue to describe it as “euthanasia”, and opponents insist on calling it “suicide” or even “state-sanctioned suicide”. Euthanasia today means a doctor delivering a lethal injection to a person – this bill does not allow this, except in a very rare circumstance, when a person cannot effectively self-administer. It allows only for a terminally ill, suffering person to self-administer lethal medication in order to end their suffering. It places control entirely in the hands of the suffering individual. They may ultimately decide not to take the medication, which happens in a third of cases in Oregon. The suffering person can determine when they may take the medication, where they will take it, and who will be present to say goodbye. It is the least medicalised intervention at the end of life that exists.
There is only one word in the English language for ending one’s own life, and that is suicide. However, in practice, this word is used to define a person who is psychologically disturbed, is usually physically well and not dying, who does not discuss his or her problem with their doctor or family, who usually dies violently and alone, causing immense grief and guilt to their family. None of these characteristics apply to voluntary assisted dying. The exact opposite defines it – suicide is not an applicable word, a point made clearly by Professor Brian Owler in the expert panel report.
Much has been made of the opposition of doctors to this legislation, a myth propagated by the Australian Medical Association. The AMA represents less than 30 per cent of Australian doctors, and is a “peak body” only in the sense that there is apparently no larger organisation. The AMA’s poll of its own members revealed that a bare majority supported its position, and a bitter debate is taking place behind the scenes regarding the pronouncements of its current president. Meanwhile, the Royal Australian College of General Practitioners, a larger numerical body than the AMA, has come out in support of the legislation, stating that “the voluntary assisted dying bill is about meeting the needs of terminally ill patients with incurable medical conditions who do not find answers in palliative care. These patients are dying and we should allow them to die with dignity and respect.” Almost simultaneously, the Australian Medical Students’ Association announced its support, accompanied by a detailed analysis of the facts upon which their conclusion was reached. Many ethical and confidential polls of Australian doctors have shown majority support for a change to the law.
It has been the universal experience in countries where similar legislation has been introduced that the medical profession, having their horizons widened and seeing the law work in practice, have come progressively into broad support for this change.
I have been labouring in this area for 25 years, counselling many people and providing control over the end of life to some. I have done this because my conscience required me to do so, and because the law was inadequate. This meant challenging the status quo in the process, but the status quo will not change unless it is given a shove. It was a lonely task since the law made discussion with other doctors dangerous for them, and I was not prepared to put them at risk. This law will now allow doctors to communicate freely, support one another to the benefit of themselves, but, more importantly, the benefit of their patients.
This article was first published in the print edition of The Saturday Paper on Nov 25, 2017 as "The right to die". Subscribe here.