Appendix 1. The right to die with dignity - euthanasia

Background

1.Voluntary euthanasia is the practice of ending life in a painless manner. Voluntary euthanasia means that a person

• who is terminally ill;
• who feels that their life is not worth living because of intractable pain, and/or loss of dignity and/or loss of capability;
• who repeatedly and actively asks for help in dying;
• who makes their decision freely, voluntarily and after due consideration (and is not suffering from treatable depression);

should have the option of requesting assistance in dying. Voluntary euthanasia is the humane, moral and civilised outcome for Australia and consistent with providing dignity for terminally ill patients who want it.

2.The Euthanasia Laws Act 1997 repealed the Northern Territory’s Rights of the Terminally Ill Act 1995 and prohibited the introduction of similar Acts in the Australian Capital Territory (ACT) and Norfolk Island.

3.Australia, through the Euthanasia Laws Act, has denied people living in Territories the right, through their legislatures, to enact legislation permitting voluntary euthanasia, a right that is not denied people living in Australian States. It has denied terminally ill people the right to die with dignity. The inability of State parliaments to stand up to organised religion also denies terminally ill people the right to die with dignity.

4.I am the ACT Chapter Coordinator for Exit International, the voluntary euthanasia organisation headed by Dr Philip Nitschke, and approach this issue as a middle-aged Australian male, in good health, who is saddened by the attitude, even arrogance, of those who deny the rights of terminally ill patients to access information about end of life options, and about accessing voluntary euthanasia. Other people do not know what is better for terminally ill patients than the patients themselves. Whether or not I ever have the desire to request voluntary euthanasia, I, and many others, want the option of voluntary euthanasia.

A1 Arguments in support of voluntary euthanasia

A1.1 Rights of individuals in a democracy

5.John Stuart Mill, one of the architects of democratic doctrine, advanced the principle that ‘the only purpose for which power can be rightly exercised over any member of a civilised community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant’. Accordingly, democratic societies can make laws to prohibit murder and robbery, but should not make laws to prohibit sex before marriage, religion, or voluntary euthanasia. This is because terminally ill patients who desire euthanasia for themselves are not physically harming other people.

6.Mill’s philosophy can be reduced to the statement that, ‘in any legal issue between an individual and the state, the burden of proof for showing that an individual’s behaviour is undesirable, always rests upon the state, not upon the individual’. The onus is thus on those opposed to euthanasia to ‘prove’ that voluntary euthanasia is fundamentally flawed.

A1.2 The rights of an individual

7.Sue Rodriguez was a Canadian who died in 1994 from Lou Gehrig’s disease, but not before taking her case to the Canadian Supreme Court in an attempt to gain permission for her own legal euthanasia. In explaining her situation, she questioned that if she cannot give consent to her own death, then whose body is it? ‘Whose life is it anyway?’ After passage of the Euthanasia Laws Act 1997 in Australia, the majority of Australians would have asked the same question.

8.Bob Dent, the first of four people to die under the Northern Territory’s Rights of the Terminally Ill Act, was adamant that the beliefs of others should not be forced on individuals. He said ‘What right has anyone, because of their own religious faith to which I do not subscribe, to demand that I must behave according to their rules’.

9.It is anomalous that currently an act such as suicide can be legal, but to seek and gain assistance with that act is not. In effect, the Euthanasia Laws Act inflicts a form of discrimination on those terminally ill patients who would like to commit suicide but do not have the means to do so.These are exactly the people for whom the option of voluntary euthanasia is particularly appealing. Voluntary euthanasia would reduce suffering and loss of dignity for terminally ill patients.

10.The concept of individualism is fundamental to democratic political theory. In a democratic society, individualism posits that latitude be given to individuals to behave as they wish, and to develop and satisfy their interests. Mill stated that ‘Over himself, over his own body and mind, the individual is sovereign’. To deny a person the right to live his or her life as he or she wishes implies that each individual does not know what is right for himself or herself.

11.Individuals can make important decisions about their bodies when they are young, for example, they can decide to participate in dangerous sporting activities or women can choose to have an abortion. However, since the Euthanasia Laws Act came into force, it seems that somewhere between the ages of twenty (when some women might have an abortion) and seventy (the age of some terminally ill patients) women lose legal control of their bodies. The Euthanasia Laws Act and its impact on terminally ill people is a denial of rights. It represents moral oppression at a level rarely experienced in Australia.

12.Members of the clergy, who seem to be the most vocal opponents of voluntary euthanasia, have imposed their values on euthanasia on other individuals through their opposition to the right to die, but I suspect that they would not entertain a reciprocal arrangement that impinged on their individual freedoms. In the spirit of Voltaire, the clergy and other euthanasia opponents most certainly can remonstrate with people requesting euthanasia to change their minds, but they ought not to be able to compel them by insisting on a legislative fiat in a democracy. Voluntary euthanasia is morally just precisely because it is voluntary.

13.Voluntary euthanasia supporters on the other hand do not insist that all people must have voluntary euthanasia, but rather that everybody be given the choice. For an issue as personal as one’s own life and death, the choice of how you might die is one of the most personal decisions an individual should make. To be denied the right to make this decision is a blight on democracy.

14.In Australia, we now have the situation that elderly Australians are travelling overseas in search of voluntary euthanasia, attempting to manufacture drugs in Australia, travelling overseas to buy and import drugs, and taking other initiatives, to give themselves a dignified end of life option if they were to become terminally ill. Australian doctors are assisting patients with voluntary euthanasia (a survey indicated more than a third of doctors have done so), albeit in an illegal environment. All of this activity is happening and is unrefuted, and no serious efforts are being made to stop any of this activity. Perhaps there is a latent and acceptable view that these elderly people are not dangerous to society, and should not be the subject of criminal prosecution.

15.Voluntary euthanasia should be the right of every Australian. In the words of Marshall Perron, the former Northern Territory Chief Minister, ‘It is surely preferable to have voluntary euthanasia tolerated in particular circumstances with stringent safeguards and a degree of transparency, than to continue to prohibit it officially while allowing it to be carried out in secret without any controls’.

A1.3 Rights of people living in a territory

16.It is within the Commonwealth Government’s legal power to make laws for the government of any territory, according to s.122 of the Constitution. However, the Euthanasia Laws Act effectively discriminates against people living in territories because the Commonwealth does not have the right to legislate on this matter for the States. I doubt if it was the intention of those who drafted the Constitution that such discrimination should occur.

17.The Euthanasia Laws Act, in prohibiting the territory governments from enacting voluntary euthanasia legislation, limits the ability of territories to govern themselves. Territory citizens are considered sufficiently responsible to make their own wills, to marry, to ask for removal of life support, and arrange financial transactions, without interference from an authoritarian state. Yet the Euthanasia Laws Act effectively dictates that terminally ill individuals in the Northern Territory, the ACT and Norfolk Island, are not sufficiently responsible to make decisions about their own bodies, about their quality of life, and how they should live.

18.As an example, the Australian Capital Territory (Self-Government) Act 1988 states that the ACT Legislative Assembly has ‘power to make laws for the peace, order and good government of the Territory’. From the perspective of territory governments, and territory citizens, not being able to make voluntary euthanasia laws is inconsistent with this objective, and an insult to the ability of territory citizens to govern themselves. Australian Territories should have the same rights to make laws for their peace, order and good governance as any state.

19.One reason for the introduction of the Euthanasia Laws Act was ‘if the parliament of the Commonwealth of Australia cannot resolve a matter that goes to the life and death of its citizens, then what is the purpose of this parliament?’. Perhaps more pertinently, one should ask what purpose the territory parliaments serve if the Commonwealth is to override their laws.

20.The Euthanasia Laws Act was not legislation born of a need to legislate for the territories to ensure the national good, as those who drafted the Constitution might have envisaged, but rather an attempt to impose the predominantly religious view of the leaders of the previous socially-conservative government on as many Australians as possible.

21.The territories should not have to live with the uncertainty of not knowing which laws will be overturned, or which powers will be revoked, whenever some Commonwealth leaders feel inclined to force their religious values on people. Nobody, including politicians, would appreciate having the values of a religion, not of their own choosing, forced on them.

A1.4 Freedom of religious expression

22.This underlying rationale for the Euthanasia Laws Act—the religious opposition to voluntary euthanasia by certain politicians—has again come to the fore through the Commonwealth Parliament’s recently legislated ban on the electronic transmission of information about voluntary euthanasia, and the ban that has also been placed on the sale of The Peaceful Pill Handbook by Dr Philip Nitschke and Dr Fiona Stewart. Nonetheless, in the absence of supportive legislation, Australians are downloading the information obtained in this book, and attending meetings, to obtain all the information they need to make informed end-of-life decisions. Good policy should not be about banning information that predominately elderly Australians would use to make informed decisions about how they should live, and end, their own lives, because this is effectively forcing other people’s religious values on them.

23.Another argument relates to s.116 of the Australian Constitution. Section 116 states that the Commonwealth shall not make laws ‘for prohibiting the free exercise of any religion’. The clergy and most other euthanasia opponents rely on Christian ethical values. Clearly, those who support euthanasia rely upon different ethical values, such as might be compatible with a ‘religion’ based on the primacy of the quality of life, rather than, for example, a Christian ‘existence for its own sake’. It could be argued that legislation that prohibits people from practising euthanasia could be in contravention of s.116.

24.Jainism can be considered as a religion that supports euthanasia, and if so, practice of this religion is prohibited by an unconstitutional law. Active voluntary euthanasia (so long as there are precautions to prevent abuse) is supported some other churches. According to a 2007 Newspoll in Australia, 74% of religious people support the right of doctors to provide a lethal dose to end the life of a terminally ill patient at the patient’s request. This was also the view of 91% of those surveyed who claim to have no religion.

25.Despite the more liberal views of Christians, the clergy have been particularly outspoken against voluntary euthanasia. It is regrettable that their views do not reflect church membership and have been manifested in legislation that impacts on people who do not share their religion. The right for individuals to live their lives as they wish, without being constrained by the religious values of others, must be upheld.

A1.5 Tolerance in Australia’s multicultural society

26.In recent times there has been an ongoing debate about the diverse and multicultural society in which we as Australians all live. Tolerance of the values of others is an important element of multiculturalism, however it is defined. To avoid a ‘tyranny of the majority’ situation, the values of different cultural, indigenous, ethnic and other minority groups must be respected.

27.It is hypocritical however to claim that one is tolerant of others but simultaneously decree that their values, such as a desire for the option of voluntary euthanasia, are wrong and cannot be practised. If religious people object to voluntary euthanasia, they need not ever request euthanasia.

A1.6 Popular opinion in Australia

28.The fact that many are in favour of a particular policy does not automatically make it right. However, when it comes to public policy, and a choice of what people want for themselves (rather than others in the population), popular support for a policy should be a strong argument in its favour. After all, democracy seems to be about trying to appease the majority, without adversely affecting minorities.

29.Numerous public polls have shown that the majority of Australians, 75% before the Euthanasia Laws Act was enacted, but now 80% (according to a 2007 Newspoll) support the option of active voluntary euthanasia. It is reasonable to deduce that the clergy and other euthanasia opponents are at odds with the four-fifths of adult Australians who support euthanasia.

A1.7 Economic arguments

30.There are limited resources available for health care in the Australian economy. The current government is engaging in cost-cutting exercises, which is its prerogative, and this places further pressure on the health budget.

31.The second reading speech for the Euthanasia Laws Act by Kevin Andrews MP referred to economic pressures on terminally ill patients, but not in a way that reflects a tight monetary situation. He seemed to think that it is preferable to pay ‘$5 000 to $6 000 on average for a person in the terminal stages of their life’ even if they want to die, rather than spending this on, say, a younger person who is badly injured and wants to live. Australian taxpayers’ money is now being spent where it is not wanted or appreciated. It could otherwise be available for additional infant care, cancer therapy or emergency services, where it could save lives and improve the quality of life for others who want it.

32.One must question, as a serious matter of public policy, why public money should be spent on keeping terminally ill patients alive who do not want to live, in preference to patients who do.

A1.8 The human factor

33.I have referred to the ‘terminally ill patient’. This is a rather impersonal term, disguising the fact that patients are people; they are people with feelings, and they are loved by friends and relatives. These people must be treated in a humane and compassionate way. Australians are now living longer, and our ailments are often well treated with drugs. But for some people these drugs do not provide a good quality of life, and they may suffer from continuous pain, discomfort or loss of dignity. Some people would like to choose the option of euthanasia.

34.To deny terminally ill patients the right to euthanasia is to condemn them to a miserable existence, contrary to their wishes. It is hard to establish any difference in moral character between someone who denies a legitimate request for voluntary euthanasia, and who subsequently watches that person die a slow and painful death, and someone who watches a cancer-ridden pet writhe in agony without putting it down. Most people—80% of Australians—would argue that if you are terminally ill, are of sound mind and not clinically depressed, and choose euthanasia, then it is morally right.

35.For acts such as voluntary euthanasia that impact directly on an individual, the moral and humane thing to do is what is right for the individual, and only each individual knows what this is. Voluntary euthanasia is moral and humane because it is what the individual wants. And that accords with common sense.

36.The gist of the above analogies is that not providing the option of voluntary euthanasia in the above situations is inhumane and callous. In a humane society the prevention of suffering and the dignity of the individual should be uppermost in the minds of those caring for the terminally ill. When the quality of life is more important than the quantity of life, voluntary euthanasia is a good option.

A2 A refutation of some arguments against voluntary euthanasia

A2.1 Possible abuse of euthanasia legislation

37.Four people made use of the Northern Territory’s Rights of the Terminally Ill Act before it was overturned. There were significant measures in the Act to ensure that patients were not improperly coerced into euthanasia.

38.Marshall Perron neatly encapsulated some of the more important measures in the Northern Territory’s Act to ensure it was not abused. He said ‘Voluntary euthanasia is patient driven. The Northern Territory law dictates that the patient must personally initiate the process, consider the options for treatment and palliative care, be psychologically assessed, sign a request, obtain second opinions, consider the effect on the family, use qualified interpreters if necessary and endure a cooling off period. The patient can of course change their mind at any time and stop the process instantly. Additionally, detailed records must be kept. Government regulations must be followed. The Coroner must be informed and has a statutory responsibility to report to the Attorney General and parliament any concern regarding the operation of the legislation. To kill another without these conditions being fulfilled is to commit murder under the Northern Territory Criminal Code—penalty mandatory life in prison.’

39.Mr Perron also said that although more elaborate safeguards could have been put in place, the safeguards in the Northern Territory Act ‘prevent people who might opt for voluntary euthanasia simply because they are temporarily depressed, or who are being coerced by others, from being legally able to be assisted’. Any patients who request euthanasia under duress will not convince a jury of doctors that their decision has been made ‘freely, voluntarily, and after due consideration’, as the Northern Territory Act requires. Consequently, such patients will be considered ineligible for euthanasia.

40.No worst-case scenario is impossible, but it is extremely unlikely that euthanasia legislation, based perhaps on the Northern Territory Act, could be abused. Most Australian doctors would consider it an insult to suggest that, for example, a group of three doctors would maliciously collude to arrange the death of a terminally ill patient without the patient’s consent.

41.Nonetheless, a legislated regime must be preferable to the unregulated voluntary euthanasia activity that occurs now without any controls.

A2.2 International experience

42.Some forms of euthanasia are legal in Belgium, Luxembourg, The Netherlands, Switzerland, and the US States of Oregon and Washington. It seems legislators are starting to respond to the needs of terminally ill patients. Importantly, the legalised use of voluntary euthanasia in these jurisdictions is not out of control as has been claimed by those opposing voluntary euthanasia. Interestingly, but not surprisingly, the rate of euthanasia in the Netherlands has decreased rather than increased. This is probably because, amongst other things, people are aware that a voluntary euthanasia option is available if they need it, so non-voluntary euthanasia, and suicide by premature access of more drastic and less dignified options, is not required.

A2.3 The ‘right to life’ and ‘sanctity of life’ arguments

43.The right to life argument in the context of voluntary euthanasia has no ethical merit. The ‘right to life’ is no more than a ‘right’. The right to life is not a duty to live. The right to life does not demand that it must be exercised.

44.People have the right to walk in their back yard if they want to, but there is no compulsion to do so. Terminally ill patients who want euthanasia for themselves choose not to exercise their right to life. This choice might not be understood by the clergy and other opponents of euthanasia, but it is the choice of those who want voluntary euthanasia.

45.An often touted argument deals with the sanctity of life. A problem is that the word sanctity only has meaning for those with particular religious beliefs. And it seems to be applied selectively. The Christian Bible is littered with instances of murder, sacrifice and torture, including of women and children, so the sanctity of life argument is not even respected by the Christian clergy.

46.People with other beliefs, such as those who might, for example, have an objective of ‘to live my life as long as I am happy and healthy, and, if that is not possible, then to die with dignity’ are discriminated against by the sanctity of life argument.

47.If life were sacred, there would also be strong arguments against the withdrawal of life support (passive euthanasia), self-defence and suicide. It would follow that society should do its utmost to ensure that everyone stays alive no matter what the circumstances, and this would be unacceptable.

A2.4 An incorrect patient diagnosis

48.Euthanasia opponents claim that a terminally ill patient could be incorrectly diagnosed, and could possibly recover, so euthanasia should be forbidden.

49.It is foolish to claim that incorrect diagnoses and prognoses could never occur. But for all practical purposes, they can be ruled out. Dr Alistair Browne has remarked that ‘it is frequently beyond all reasonable doubt that the diagnosis is correct or some cure will not be discovered in time to help, and it is not clear why this should not be sufficient. The law has never taken a “pigs might fly” attitude towards the risks attendant on any activity. We only need to establish “guilt beyond reasonable doubt” to send a person to prison or even to his execution, and it is not possible to require more without making the enforcement of the law impossible. Why a more stringent standard should be demanded in the cases of assisted suicide and active voluntary euthanasia yet needs to be explained.’

A2.5 The slippery slope argument

50.The slippery slope argument is a common sensationalist argument of the clergy and other euthanasia opponents. It claims that if right to assisted suicide and active voluntary euthanasia were instituted, it would lead to an increased rate of non-voluntary euthanasia, then euthanasia of those who are not attractive to society, those with fanatical political beliefs, extreme religious or cultural values and so on. Thus if we do not draw the line where it is, we will not be able to prevent substantial harm to others.

51.This argument has no merit. For there to be evidence of a slippery slope there would need to be evidence of more non-voluntary deaths within a tolerant, legalised voluntary euthanasia framework.

52.Studies have found that a ‘group of people being helped to die without consent existed in all surveyed countries, irrespective of whether there was an environment of decriminalisation or harsh legal sanction’. Moreover, it seems that a tolerant environment for voluntary euthanasia, decreases, rather than increases, the number of non-voluntary deaths. This has certainly been the case in the Netherlands. If there were a slippery slope, it is going the wrong way for those opposing euthanasia.

53.The line on what will be permitted will be drawn by the elected representatives of the Australian people in each jurisdiction. Despite scaremongering, there will be no slippery slope. Good governance demands legislative oversight of voluntary euthanasia.

A2.6 The palliative care option

54.The clergy and other euthanasia opponents argue that assisted suicide and active voluntary euthanasia are unnecessary because of the extraordinary developments in palliative care and pain control. I suspect Angelique Flowers would have disagreed, but she suffered.

55.Advances in palliative care are always welcome. In some, perhaps many cases, the need for assisted suicide and active voluntary euthanasia will be reduced through developments in palliative care. But these developments do not obviate the need for voluntary euthanasia nor can they control all aspects of a patient’s illness to the level desired by all patients. There are still numerous illnesses or conditions for which pain, extreme suffering, and loss of dignity are difficult or impossible to eliminate. Some patients will suffer the terror of breathlessness or vomit uncontrollably, others will be choking continuously or unable to swallow, others will be paralysed, and still others will be helpless, weak, incontinent and totally dependent on others. Even if pain and distress are not the major problems, there is often a strong fear of the dependency that would result if all bodily functions, mental and physical, were sufficiently impaired.

56.Palliative care is not an option for all people, since no amount of palliative care can relieve all distress. Voluntary euthanasia is a reasonable alternative for those who want it. Clearly, 80% of Australians, including the many thousands of members in Exit International and the state-based voluntary euthanasia societies, want voluntary euthanasia as an option.

A2.7 The concept of harm

57.Some who argue against voluntary euthanasia claim that doctors must ‘first, do no harm’. Leaving a person, such as Angelique Flowers, to suffer when palliative care has not provided adequate respite from pain and suffering, is simply unacceptable. For many terminally ill people, staying alive is doing harm. The option of a peaceful death, before one vomits faecal matter, is preferable for many people, such as terminally ill people with colon cancer. They should not be denied the right to have a peaceful death, a right that does not directly affect others.

58.It is arrogant to impose one’s belief systems on another individual, effectively denying the other the right of equality. Only terminally ill individuals themselves know what harm is. Those who opt for quantity of life regardless of the pain or suffering might not want voluntary euthanasia, and they need never request it. However, as many terminally ill patients consider that the quality of their life is more important than staying alive, the option of a peaceful death to alleviate their pain and suffering is a more humane and valid alternative.

59.Denying an individual’s right to die is an arrogance that mostly derives from primitive religious teachings. Other Australians should have the right not to have these primitive religious perspectives forced on them.

The right to die with dignity is justifiable

60.I have provided substantial arguments in favour of voluntary euthanasia and the rights of an individual to choose how they should die and rebutted the major objections to voluntary euthanasia. Australia’s current legislative regime for euthanasia is undemocratic, violates an individual’s basic rights, discriminates unfairly against people living in territories, is inappropriate in a multicultural society, runs contrary to popular opinion, is economically unsound, causes unnecessary pain and suffering, and is inhumane. It denies individuals the rights to their own lives.

61.If the status quo were to remain in Australia, it would have a deleterious effect upon those terminally ill patients who would like to have the option of voluntary euthanasia. The right to die might be a right that is only ever exercised by a small minority of the population: terminally ill patients for whom palliative care is inappropriate. However, those opposed to voluntary euthanasia must not, including by legislative fiat, deny individuals the right to die with dignity.

62.The arguments I have presented stand on their own if they are considered with an open mind, devoid as far as possible of any cultural, religious or other bias. Australia must observe the right to die with dignity if all individuals are to be respected. Despite their claims, those opposing this right do not know, more than patients themselves, what is better for terminally ill patients. The rights of an individual must prevail.

 

David Swanton