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Health Select Committee

A Petition from Hon Maryan Street and 8,974 others requested: “That the House of Representatives investigate fully public attitudes towards the introduction of legislation which would permit medically-assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable.”

In response to this petition, the Health Select Committee undertook an investigation into ending one’s life in New Zealand

The committee considered all the various aspects of the issue, including the social, legal, medical, cultural, financial, ethical, and philosophical implications.

Read the final Committee report here.

The Health Select Committee investiagted:

1. The factors that contribute to the desire to end one’s life
2. The effectiveness of services and support available to those who desire to end their own lives
3. The attitudes of New Zealanders towards the ending of one's life and the current legal situation
4. International experiences

 

The Nathaniel Centre Submissions to the Health Select Committee are copied below. The Oral submission presented on 9 November 2016 is first, followed by the longer written submission of 29 January 2016. Some other submissions can also be read here: Other Submissions

Oral Submission:

Oral Submission to the Health Select Committee Inquiry into Ending One’s Life in NZ

The Nathaniel Centre – the NZ Catholic Bioethics Centre

Presented by Dr John Kleinsman (Director)

Thank you for the opportunity to speak to you. I will speak to four main points this morning:

1. Choices are shaped by the context in which we live
2. The distinction between choice and autonomy
3. Applying the “precautionary principle”
4. The caring role of health professionals precludes their involvement in ending the lives of their patients

 

1. Choices are shaped by the context in which we live:

One of the arguments most commonly put forward in favour of assisted suicide or euthanasia (for the sake of brevity I will use the term ‘euthanasia’ to cover both practices from here on in even though the terms have a distinct meaning) is that such matters are best left to individuals to choose and it is not for others, including the State, to deny such a choice. Those who are opposed can exercise their choice not to use it and those who want it can exercise their choice. It is presented as a win-win situation.

While our written submission makes clear that we are strongly opposed to euthanasia for very pragmatic reasons, we are not opposed to people exercising choice. However, as a society, we routinely limit people’s choices for the sake of the common good. The key question is whether, with respect to euthanasia, there are sufficiently serious reasons to continue to do so. We say there are.

We believe the strongest arguments against granting individuals the right to choose euthanasia arise when we understand that all choices are made within a context and that context can be either empowering or disempowering. We all need to be cognisant of the following features which define the current NZ context:

- our inability to have open informed conversations about death and dying and what a good death looks like
- our healthcare systems and eldercare support systems are increasingly operating under growing resourcing pressures
- the inability of our laws and regulations to deal with steadily growing rates of elder abuse
- rising rates of mental illness, including depression, especially amongst the elderly
- the negative attitudes of many towards living with any sort of disability or dependence
- rates of suicide that are amongst the highest in the world and still rising, including elderly suicide
- the fact that as many as 2000 New Zealanders are in in psychogeriatric facilities and residential private hospitals without consent or protection - described recently as the newest frontier in illegal detentions in New Zealand
- inequitable access to quality palliative care
- varying levels of competence amongst GP’s in providing quality palliative care
- a changing demographic with growing numbers of elderly

- the increasing social isolation of the elderly and a growing sense amongst many that they are a burden and that society has no place for them
- increasing pressure on families and, simultaneously, a growing expectation that families and communities will carry more of the responsibility of supporting the elderly and dying.

All of which leads us to the conclusion that there has never been a more dangerous time in our country’s history to think about implementing an assisted suicide or euthanasia regime.

The combination of all of these factors create the conditions for a ‘perfect storm’ and has the potential to drive up demand for euthanasia to surprising levels, as has recently happened in Canada where the uptake is three times higher than anyone ever anticipated. While euthanasia may be instituted as a measure of last resort, it will not stay that way. 

2.         The distinction between choice and autonomy:

When large numbers of our most vulnerable elderly and disabled citizens along with their families will, for financial or social reasons, find themselves in situations where they lack real choices, it is irresponsible and unjust to then provide them with the choice of prematurely ending their life.

We disagree strongly with the legal counsel for the Human Rights Commission who, just a few weeks ago, appeared before you and defined ‘autonomy’ as, quote, “the ability to make choices for oneself”, end quote. But choice can be conformity when people have little ability to determine the conditions of consent. Competent people can easily find themselves making understandable but terrible choices out of desperation – this is not autonomy. Autonomy arises only when we have a range of real choices and are free to choose.

A commitment to social justice demands firstly that we work to ensure that there is a coincidence between choices and autonomy, but, where that is not possible, or until it is possible, social justice also demands that we must withhold certain choices. 

In this case, because people’s lives are literally at stake and because there is no effective redress for wrongful death, we must err heavily on the side of caution.  In bioethics we use the term “precautionary principle”.

3. The Precautionary Principle:

The precautionary principle to risk management states that if an action or policy has a suspected risk of causing harm then, in the absence of empirical evidence that the action or policy is not harmful, the burden of proof that it is not harmful falls on those supporting the action or policy.

This means it is incumbent on proponents of change to provide indisputable evidence that any regulatory system would be sufficiently safe (and we have yet to have the conversation as to how many wrongful deaths we are willing to accept). In the absence of robust indisputable evidence, the precautionary principle means that even the possibility of significant risks would require that New Zealand should pull back from introducing euthanasia.

Whatever way you interpret the overseas data, even when you look at in the most positive light, it is impossible to conclude that the introduction of euthanasia would NOT lead to significant risks.

The patterns overseas are clear and include:

-          Year on year significant increases in the numbers accessing assisted suicide or euthanasia

-          Inability of regimes to enforce legal requirements

-          Broadening of the scope of eligibility

4. Leave health professionals out of euthanasia

Fourthly, we want to speak to the wording of the original VES petition and, specifically, the request to consider permitting “medically-assisted dying” in New Zealand. The desirability of providing euthanasia needs to be considered separately from the question about who the agents might be.

It is dangerous to assume that that euthanasia belongs within medicine and, besides, it is incorrect to think that we could only have a euthanasia regime if it involved health professionals as the agents.

From a bioethical perspective we argue that euthanasia is fundamentally incompatible with the very core of the medical and nursing professions.

Consider that we have faith in our justice system precisely because every person has two advocates – one who argues their guilt and one who argues their innocence. Just as we would never entertain abandoning that system and trusting one lawyer to represent both sides of the case, so we should never put health professionals in the position of representing the ‘life’ interests of their patients while also being the judges of their quality of life and the gatekeepers for accessing euthanasia. We would then in effect be asking doctors to be judge, jury and executioner.   

In promoting the idea that health professionals could readily take on this role, the NZ Nurses Organisation, the Human Rights Commission and others, including David Seymour and Maryan Street, have claimed that one of the safeguards for doctors and nurses who do not want to be involved would be a guaranteed right to conscientious objection. However, you need to know that the whole concept of medical conscientious objection is currently under serious threat around the world, including New Zealand. Doctors and nurses can no longer have faith in that right! As MP’s you can have no faith in that as a safeguard.

Conclusion:

The current law may not be perfect but it provides a clear bright line. Moving the bright line of prohibition would create far more problems than it would ever solve.  Apart from the intractable problems of consent and coercion, moving that bright line to some new position would merely create new ‘hard cases’ on the boundary. You would not be solving a problem, you would merely be shifting it.

Good governance involves, among other things, exercising ‘anticipatory governance’ – that is, evaluating the decisions that are made now with an eye to how they will play out in the future. We know from overseas jurisdictions that early safeguards or boundaries inevitably extend to include children, those with mental illness and disability and the elderly who are tired of life.

Succumbing to the ‘choice’ narrative that is dominant in New Zealand today and giving a green light for any form of assisted suicide or euthanasia regime, even a narrow one, will inevitably lead to the same expansions here – experience as well as logic dictates this. The safest way forward is to hold the current line.

Thank you. 

9 November 2016

The Nathaniel Centre Submission:

Submission to the Health Select Committee:
Investigation into Ending One's Life in New Zealand

from

The Nathaniel Centre – the New Zealand Catholic Bioethics Centre

29 January 2016

The Nathaniel Centre

The Nathaniel Centre is an agency of the New Zealand Catholic Bishops' Conference. Our role is to address bioethical and biotechnology issues on behalf of the Catholic Church in New Zealand.

The key functions of The Nathaniel Centre include: acting as an advisory and resource centre in bioethics for individuals and for educational and community groups; carrying out research and taking action to support the Church's pastoral response to bioethical issues in the community while respecting the needs of different cultures and groups in society.

The Petition from the Voluntary Euthanasia Society

We understand that the Investigation being carried out by the Health Select Committee was triggered by the following petition from the Voluntary Euthanasia Society:
"That the House of Representatives investigate fully public attitudes towards the introduction of legislation which would permit medically-assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable."

Our Submission and the Health Select Committee Terms of Reference

Our submission, which consists of an Executive Summary and four key sections, is shaped in accordance with the following Terms of Reference developed by the Health Select Committee:
"In order to fully understand public attitudes the committee will consider all the various aspects of the issue, including the social, legal, medical, cultural, financial, ethical, and philosophical implications.

The Committee will investigate:

1. The factors that contribute to the desire to end one's life.
2. The effectiveness of services and support available to those who desire to end their own lives.
3. The attitudes of New Zealanders towards the ending of one's life and the current legal situation.
4. International experiences."

The first introductory section of this Submission involves information of a more general nature. Sections two, three and four focus, in turn, on the first, third and fourth Terms of Reference. We consider it beyond our particular area of expertise to comment on the effectiveness of services and support available to those in New Zealand who desire to end their own lives.

Part I -  Introductory Comments

Our Definitions of the Key Terms

We offer the following widely-held definitions of the key terms that are relevant to this Investigation into the ending of one's life:

1. 'Suicide': The word derives from the Latin suī– of oneself – and cīdium which is a derivative of caedere – to kill. It is defined as "The act or an instance of taking one's own life voluntarily and intentionally" when one does not want to continue living (see http://www.merriam-webster.com/dictionary/suicide). We note that this definition is an all-encompassing one which does not distinguish between the different motivations or states of mind that might lie behind a person's decision or desire to suicide. As such, it includes persons whose wish to die is related to having a life-limiting or terminal illness.

2. 'Assisted suicide': Any suicide carried out with the intentional help of another person.

3. 'Physician-assisted suicide': A suicide carried out with the help of a doctor in response to unbearable pain or suffering

4. Euthanasia: Any action (or omission) that of itself and by intention causes a person's death in order that their suffering may be eliminated. 'Medically assisted euthanasia' refers specifically to any act undertaken by a physician or other health professional that intentionally ends the life of a person. Euthanasia is 'voluntary' if done at the explicit request of a competent patient. It is 'non-voluntary' when it is done without the consent or request of a patient who cannot give consent, for example a neonate or person in a coma. It is 'in-voluntary' when it is done to a patient who had explicitly stated they did not want it or who was capable of giving consent but was not asked.

5. 'Terminal illness': A progressive life-limiting disease that cannot be cured and where death is foreseen as an imminent consequence.

6. 'Irreversible condition': Any condition, including but not limited to a terminal illness, which has a life-limiting or debilitating effect on the person. We note that many people with irreversible conditions continue to live normal or near normal lives with appropriate levels of care and support. This underscores the fact that many people with an 'irreversible condition' are not dying, for example persons with Type II diabetes.

7. 'Medically-assisted dying': a term, mostly used by proponents of assisted suicide or euthanasia, to describe acts of assisted suicide or euthanasia that actively involve the intervention of one or more health professionals. We note that, because it fails to differentiate acts of assisted suicide from acts of euthanasia, this term lacks precision.

8. 'Palliative sedation': "... the monitored use of medications to relieve refractory and unendurable symptoms by inducing varying degrees of unconsciousness-but not death-in patients who, given their disease state, progression, and symptom constellation, are expected to die within hours or days" (http://www.medscape.com/viewarticle/550666_2).

Our Approach to the Investigation into the Ending of One's Life in New Zealand

9. We support the concept of people with advanced progressive illnesses being cared for in a holistic way that adequately addresses their need for effective pain relief as well as having their psychological and spiritual needs/suffering addressed. We believe that good palliative care as it is currently available and practised in New Zealand can achieve this.

10. It is acknowledged that even with the best available care, there remain a small number of extreme cases where a person continues to experience intractable physical pain. Likewise, we acknowledge that some people facing an imminent death may continue to experience extreme personal distress of an existential nature that cannot always be adequately managed. In these rare circumstances there already exists the ethical and legal option of 'palliative sedation' as a means of last resort. As noted by the Australian and New Zealand Society of Palliative Medicine: "Palliative sedation for the management of refractory symptoms is not euthanasia" http://www.anzspm.org.au/c/anzspm?a=da&did=1000948&pid=1383782594

11. In our considered view (one that is shared by most palliative physicians), advances in palliative care over the last two decades, along with the option of palliative sedation carefully used in the most extreme cases, mean that neither assisted-suicide nor euthanasia are 'necessary' as a way of dealing with suffering, whether that suffering be physical or of an existential/psychological nature. For this reason we argue that the debate about state-sanctioned assisted suicide or euthanasia is most accurately described as one of 'want' (or 'choice') rather than one of 'need'.¹

12. We recognise that what is at stake for many proponents of assisted suicide and/or euthanasia is the choice to take control of their death by dictating the means and timing.

13. The experience of those who work daily with the dying is that high-quality palliative care currently provides persons with many ways of taking control of their living while they are dying.

14. We do not believe that people's death should ever be intentionally hastened. Consequently, we are absolutely opposed to the introduction of legislation which would permit assisted suicide or euthanasia, whether by members of the medical profession or anyone else. The key reasons we are opposed are presented and explained in this Submission.

15. Neither do we believe that a person's dying should be unnecessarily prolonged. The law as it stands in New Zealand already grants every person the right to refuse services and to withdraw consent to services. (Code of Health and Disability Services Consumers' Rights, Right 7)

16. It is well known that Catholic moral teaching is unequivocal in its opposition to assisted suicide and euthanasia. The reasons for this are many and varied. They include reasons that some people would regard as 'religious' in nature because they reflect a certain understanding of the divine origins of life. They also include reasons that are linked to questions of the common good, human dignity, human choice, justice, human rights and human well-being, reasons shared by people of all other faiths and none.

17. Religious arguments have their own validity and rationale within a particular faith-based framework. However, we recognise (i) they will not be compelling for persons who do not share our faith perspective and (ii) they are not sufficient for shaping public policy in a secular society. For this reason our submission will focus on arguments of a social, cultural, ethical and philosophical nature that can be understood and appealed to by all persons irrespective of their religious background.

Framing the Ethical Questions, Terminology and Language

18. Regarding the Terms of Reference, we note that the Health Select Committee has located the issue of "medically-assisted dying" within the broader ambit of suicide prevention. While there are those who argue that the premature death of persons with a life-limiting illness amounts to a form of 'rational' suicide or homicide in an attempt to persuade that the issues surrounding the intentional premature self-inflicted death of persons with a terminal illness are socially, ethically and legally distinct from other forms of suicide, we strongly believe that they are intimately connected.

19. The common thread linking all forms of premature and intentional death is the theme of suffering and how, as a society, we can best respond to human suffering – specifically whether our society should ever see self or other-inflicted premature death as a socially acceptable response to personal suffering, whether that suffering be of a physical, mental or existential (emotional, social, spiritual or psychological) nature.

20. In a recent and important New Zealand High Court Case involving the right of a terminally ill person to access the means for suicide from their doctor, Justice Collins affirmed that assisting a person with a life-limiting illness to end their life by providing them with the necessary means clearly fits within the definition of assisted suicide that is prohibited by the current law.² In our view this confirms that any debate about "medically-assisted dying" is ultimately and properly a debate about whether assisting in some suicides is acceptable.

21. The Committee should not be distracted by those who suggest that the deliberate and intentional premature ending of lives in cases of terminal illness or unbearable suffering is something other than assisted suicide! If we are to have an open and honest debate about the benefits and risks of suicide as a way of dealing with personal suffering then, in the interests of making a properly informed decision, we should not be afraid to call it what it is.

22. In line with the above, we suggest that one of the fundamental questions is whether or not it is practically possible to carve out exceptions from the current law that will safely allow assisted suicide in certain circumstances (such as terminal illness or any irreversible condition) while discouraging it absolutely in other circumstances.

23. In the same High Court Case referred to above, Justice Collins similarly ruled that acts in which an agent intentionally and prematurely ends the life of a dying person, even with their consent, fall within the ambit of homicides that are prohibited by the current law. Once again, from an ethical and legal perspective, the best way to frame the debate about euthanasia is to ask whether it is practically possible for exceptions to be carved off from the current law that will safely allow such acts of homicide (euthanasia) in certain circumstances.

24. In order to satisfactorily answer the question about safety it is important to consider what Carol Gill and others refer to as "the indirect impact of legalization upon people who have never volunteered to die"³ – in other words, the unintentional or 'distal' consequences of a law change, both for individuals as well as society as a whole.

25. Drawing on Justice Collins' ruling that the two different forms of assistance sought by Seale's lawyers fall within the ambit of the current laws relating to assisted suicide and homicide, and also for reasons of linguistic as well as ethical and legal precision, we will use the terms 'assisted suicide' and 'euthanasia' throughout this submission rather than the term "medically-assisted dying" that is used in the VES petition.

26. We further note, along with many others, that the key reason protagonists of a law change employ alternative language to describe assisted suicide and euthanasia, is to "euphemise the phenomenon and obscure its nature"⁴ so as to shape the imagination of the general public in such a way as to make them more favourably disposed to a law change.

27. We wish to identify four further problems with the use of the term "medically-assisted dying".

28. Firstly, and most seriously, the use of this term assumes that, in the event it was ever legalised, health professionals would be the state-sanctioned agents. We argue strongly that the question of 'who' would act as agents is, both ethically and legally speaking, a separate question from whether assisted suicide or euthanasia is desirable in principle or in practice. The wording of the VES petition is negligent in not identifying that these are separate questions. It is crucial in our minds that these questions are kept separate and considered separately. As argued below in Part IV, health professionals need not be, and there are serious ethical and clinical reasons as to why they should not be, involved in either state-sanctioned suicide and/or state sanctioned euthanasia for particular groups of people.

29. Secondly, "medically-assisted dying" can and does describe what good palliative physicians and nurses do all the time – assist people in their dying process through ethical means that are already legal. The provision of pain effective relief is the most basic example of this. In other words, the term "medically-assisted dying" is, medically speaking, inadequate and inaccurate.

30. Thirdly, the term is confusing and not necessarily well understood by the public. As evidence of this, Canadian company Ipsos Marketing conducted a survey in 2013 in which members of the public were asked whether or not they supported "medical aid in dying". This survey showed one third of Quebecers interpreted the phrase 'medical aid in dying' as being a patient's request for lethal injection by a medical professional, while nearly 30% understood it as relieving symptoms through palliative care. Finally, nearly 40% associated it with a discontinuation of intensive medical treatment and assisted suicide. The authors concluded: "It is therefore essential to clarify applicable terms and tangibly convey the true definition of euthanasia, and avoid using even vaguer expressions such as 'medical aid in dying'."⁵

31. A fourth problem with the term "medically-assisted dying" being used by the petitioners is that it is grossly misleading. The scope of the VES petition clearly goes beyond those imminently dying to include those with "irreversible conditions". As noted in our definition above, the notion of irreversible conditions includes persons who, while undoubtedly experiencing some form of limitation or disability, are very often not dying and may well be living a relatively normal life with years and even decades to live.

Key Ethical Distinctions:

Withdrawing and Withholding Treatment are Not Equivalent to Euthanasia or Assisted Suicide

32. The question often arises: 'What difference is there between withholding or withdrawing treatment and assisted suicide or euthanasia when it seems both can hasten the death of a person?' That there is a difference, and we believe that it is ethically and legally significant, is not always accepted. For example, as Act MP David Seymour has written: "An absolute prohibition on assisted dying also calls into question the existing legality of any consent to the withdrawal or refusal of lifesaving or life-sustaining treatment. Yet already there is a degree of societal consensus that the administration of palliative sedation and the withholding or withdrawal of lifesaving or life-sustaining medical treatment, which can have the effect of hastening death, are ethically acceptable."⁶

33. The difference between withholding/withdrawing treatment and euthanasia/assisted suicide can be explained by way of three diagrams. The first diagram below shows the decline of a person with a progressive terminal illness. At a critical time prior to the point at which the person's natural physiological system would have collapsed (natural death) a particular treatment is applied. The effect of this is to slow down the rate of decline in health. If it is later deemed that the treatment is futile and/or that its benefits for the patient are outweighed by the burden of that treatment, and if the treatment is then withdrawn, the net effect is to return the person to their dying. There is no hastening of death in such circumstances in the common understanding of that term. Equally, in situations where a decision is made to withhold treatment, there is no hastening of death – merely a decision to let the dying process continue.

34. If that same treatment is ultimately judged to be futile and withdrawn at a point after the primary physiological mechanisms would have naturally failed (see diagram below) then, again, there is no hastening of death within the common understanding of that term. What we have instead is a life prolonging effect followed by a medically and ethically sound decision not to continue the prolonging of a person's death. Both this scenario and the previous one are consistent with the Hospice Philosophy and World Medical Association Code of Ethics of neither hastening death nor unnecessarily prolonging life.

35. On the other hand, when a toxic substance is applied at a point prior to the natural physiological decline as illustrated below, then what we are witnessing is clearly and unambiguously the shortening of the patient's life.

36. Similarly, it is also often asked why the administration of particular pain medications is considered ethically and legally acceptable in circumstances when it is foreseen that it may shorten a person's life, while assisted suicide and euthanasia remain unethical and illegal?

37. In explaining the closely related notion of palliative sedation, the European Association for Palliative Care (EAPC) Ethics Task Force emphasises the critical role of intention. "In terminal sedation the intention is to relieve intolerable suffering, the procedure is to use a sedating drug for symptom control and the successful outcome is the alleviation of distress. In euthanasia the intention is to kill the patient, the procedure is to administer a lethal drug and the successful outcome is immediate death."⁷

38. To summarise, health professionals already possess the ethical and legal means to address people's pain and suffering at the end of life, even in extreme cases, without having to resort to either assisted suicide or euthanasia. The withdrawal and/or withholding of treatment, along with the provision of adequate pain relief up to the point of sedation when that is required in extreme cases, are ethically and legally distinct from the practise of euthanasia or the facilitation of assisted suicide.

Summary of Part I

• Euthanasia and/or assisted suicide are unnecessary. Good palliative care, when available, can and does address the physical and psychological suffering of patients and their families. In cases of extreme pain or extreme existential distress, health professionals already have the option of using 'palliative sedation'.

• At the heart of the debate about "medically-assisted dying" are two questions: Firstly whether suicide or euthanasia, understood as the premature ending of life, should ever be recognised as a socially acceptable means of dealing with suffering and secondly, the pragmatic question of whether these practices can be safely regulated in the real world.

• In considering these questions Parliament must consider the unintentional or 'distal' consequences of a law change, both for individuals as well as society as a whole.

• The term "medically-assisted dying" is linguistically imprecise as well as confusing. It fails to distinguish between acts of euthanasia and acts of assisted suicide. It is a term best avoided in the interests of a robust open debate. Among other things it describes what good health professionals do all of the time.

• For clarity we prefer and recommend the long accepted and well understood terms 'euthanasia' and 'assisted suicide'.

• The use of the term "medically-assisted dying" by the petitioners fails to separate the question about the desirability of state-sanctioned euthanasia or assisted suicide from the question of who should be the principal agents – it should not be assumed that health professionals are the 'automatic choice' and there are solid ethical and clinical reasons to leave doctors and nurses right out of such practices.

• Withdrawing and withholding treatment are not equivalent to euthanasia or assisted suicide.

• The administration of effective pain relief, even when it is foreseen that it may shorten a person's life is not equivalent to euthanasia or assisted suicide.

Part II – The factors that contribute to the desire to end one's life.

Public Policy and the Nature of the Arguments For and Against Euthanasia and Assisted Suicide

39. Even a cursory and non-scientific survey of the way in which the debate about euthanasia and assisted suicide is presented in the New Zealand media, as well as people's reactions and comments to such articles, shows that there are two key factors in people's minds: (i) fear of pain and suffering and (ii) the right of individuals to choose and control their own destiny.

40. The experience of receiving a diagnosis of a progressive and life-limiting illness is an occasion of great distress and existential suffering for the person concerned as well as their family and friends. As a disease or illness progresses it inevitably results in a certain amount of pain along with a loss of particular physical functions and capacities.

41. It is human to recoil from and even rage against suffering. At the same time, it is a distinctive mark of being human that we can feel empathy and show compassion. One of the key ways of doing that is through our ability to care. We are not a caring society if we remain indifferent to the physical and existential suffering of persons.

42. We believe that it is fear of such pain and suffering that is a significant driver of the push for euthanasia and assisted suicide in New Zealand at this time. Euthanasia and assisted suicide are promoted and seen by many as a compassionate response to such suffering.

43. The question that then arises is whether there are ever times when death may be the only or even the best solution to some people's suffering. Our considered view (see paragraph 11 above) is that even in the most extreme cases a person's suffering (both physical and psychological or existential) can be ameliorated without needing to have recourse to either euthanasia or assisted suicide.

44. Proponents of euthanasia and/or assisted suicide who disagree with this view routinely highlight 'extreme' cases in an attempt to argue their point. Considered in isolation, the circumstances surrounding these cases generate sympathy among many of the general public for such practices. Nevertheless, we would argue that agreeing or disagreeing about whether there can ever be specific circumstances in which euthanasia or assisted suicide might be warranted is ultimately irrelevant to the debate about public policy and its expression in laws, which is what must ultimately concern Parliamentarians.

45. It is irrelevant because, from a public-policy perspective, it is not sufficient to simply establish a reasonable case for euthanasia or assisted suicide in this or that situation. Whatever justification there might be for certain individuals, it is the responsibility of Members of Parliament to weigh up the impact of a law change on the choices of others who would not otherwise volunteer for a premature death – that is to say, those who might be indirectly affected – as well as its impact on society as a whole. This process involves the consideration of complex arguments including close scrutiny of evidence from overseas. The maxim 'hard cases make bad laws' comes to mind.

46. The same point applies to those proponents of a law change who argue that even if there are already effective options for addressing suffering at the end of life for the vast majority, if not all cases, euthanasia and assisted suicide should be available as a 'preferred choice' for those who wish to take greater control over the timing and manner of their death. We recognise that there should be good reasons to withhold choice in the sort of society in which we live. That said, there are numerous instances where the law denies choices to individuals on the basis that it would have an overall detrimental effect on society as a whole. As noted above, the key ethical and legal question relates to the overall ability to safely implement such a law in the real world, recognising the restrictions that exist and which compromise people's ability to make free choices.

47. Respected New Zealand Bioethicist and Neurosurgeon Dr Grant Gillett (DPhil) puts it well: "... an empowered and articulate patient such as Lecretia Seales ... can feel that the laws we live under do not properly respect her autonomy and settled opinions about how her death ought to be managed. Our legislators, however, must also pay attention to the fact that experienced oncology staff perceived 'those patients desiring an early death as having "given up" and lacking in support.' It is for those in this more widespread and less self-assured state of mind that one wishes to invoke a powerful professional orientation towards the sanctity of life, the unique worth of every human being, and the need for dedicated and responsive care rather than definitive medical action as one prepares oneself to rest in peace."⁸

48. Put otherwise, even if it is deemed there is a legitimate case for euthanasia and/or assisted suicide for a small group of persons, and even if it can be established that within that group there are individuals who arguably know their own mind and would not be subject to societal influence or coercion of others, the critical question relates to the impact of a law change on the majority of others.

49. When considered alongside the merits of specific cases, it is the well-documented dangers and risks to the far greater numbers of those who are of a "less self-assured state of mind" that warrants retaining the status quo. Baroness Ilora Finlay puts it well: "In the real world most people who receive a terminal prognosis are frightened – whether it is fear of pain, of becoming immobilised, of incontinence, of becoming dependant on others, or just of dying itself ... In reality the vast majority of people facing dying are ambivalent, oscillating between hopelessness and hope, worrying about being a personal or financial burden on those they love or that their own care costs will erode their descendants' inheritance. In a word they are vulnerable, and it is the primary purpose of any law to protect the weak and vulnerable rather than to give 'rights' to the strong and determined at their expense."⁹

50. In reflecting on the nature of personal choices we must appreciate that there are real 'limits' that impact and restrict our freedom to choose. These limits may be physical in nature or they may relate to specific societal or cultural beliefs and attitudes related to quality and value of life – in other words, what it is that makes living worthwhile.

Impoverished Beliefs about the Value of Life and Value of the Elderly

51. The perceived value people attach to their life is closely tied in with their perceptions about how they are regarded by the rest of society. Such perceptions are generally embodied in societal 'narratives' about health, disability and well-being and they are powerful determinants of what we regard as 'good' actions and 'bad' actions. However, they are not always easily identifiable because our narratives are bound up with our institutions and rest on cultural and societal assumptions that may lie deep within our psyche.

52. When our perceptions are of a negative nature we generally refer to them as 'prejudices'. On the one hand, the force of such assumptions is independent of our ability to recognise their existence. On the other hand, their force can only be ameliorated to the extent we are able to honestly and accurately articulate our hidden assumptions.

53. Along with many others we regard the push for euthanasia and assisted suicide as the expression of an underlying and deep attitudinal shift in our society – more specifically a move towards a more 'functional' way of looking at the world and looking at ourselves. It is a shift that is the culmination of changes that ultimately started with the Enlightenment project in the seventeenth century, a shift that has increasingly led us as a society to judge our relationships according to the rationale and logic of the market place.

54. Bioethicist Richard McCormick summed up the shift towards functionalism, and in particular its impact on the elderly, as far back as 1979: "It can be persuasively argued ... that the peculiar temptation of a technologically advanced culture such as ours is to view and treat persons functionally. Our treatment of the aged is perhaps the sorriest symptom of this. The elderly are, it can be argued, probably the most alienated members of our society. 'Not yet ready for the world of the dead, not deemed fit for the world of the living, they are shunted aside. More and more of them spend the extra years medicine has given them in 'homes for senior citizens,' in chronic hospitals, in nursing homes – waiting for the end. We have learned how to increase their years, but we have not learned how to help them enjoy their days. Their protest is eloquent because it is helplessly muted and silent. It is a protest against a basically functional assessment of their persons. "Maladaptation" is a term used to describe them, rather than the environment. Hence we intervene against the maladapted individual rather than against the environment."¹⁰

55. McCormick's quote highlights the importance of paying attention to the societal and cultural narratives that underpin our choices rather than simply respecting people's choices in an uncritical way as is often argued. That a request for assisted suicide or euthanasia is regarded as, or appears as, a logical or rational expression within a particular society or culture at a particular point in time is, philosophically and ethically speaking, less important than recognising the power of cultural narrative and, more specifically, critiquing the adequacy of that cultural narrative – in particular its assumptions about inclusiveness, wellness, dignity, disability, independence and functionalism.

Key Drivers of Euthanasia and Assisted Suicide are Social and Existential

56. While there are almost certainly situations where patients die suffering from avoidable pain due to a lack of effective palliative care, palliative specialists almost uniformly agree that requests from patients to die are rarely made because of pain. Rather, as Karen Hitchcock states, the desire to hasten death principally comes from a feeling of hopelessness: "...it is often because of despair, loneliness, grief, the feeling of worthlessness, meaninglessness or being a burden."¹¹ Gillett makes a very similar point: "Factors influencing a desire to hasten death include psychological suffering, perceiving oneself to be a burden to others, demoralisation, less confidence in symptom control, a less religious attitude to life, fewer social supports,¹² hopelessness,¹³ and personal psychiatric history.¹⁴ The statistics from Oregon further bear out the claims of Hitchcock, Gillet and others.¹⁵

57. The particular significance of the fear of being a burden as a reason for supporting "medical practices that hasten death" for "healthy older New Zealanders" is highlighted in studies by Malpas et al and McLeod.¹⁶

58. Euthanasia and assisted suicide are, in other words, overwhelmingly linked to 'existential suffering' and, critically, existential suffering is inextricably linked to attitudes deeply embedded in our culture which is now becoming increasingly ageist, evidenced by growing rates of social isolation and associated poorer mental health among the elderly.¹⁷

59. We know that there is a growing sense of social isolation amongst the elderly in New Zealand. For example, the Auckland results of the New Zealand Longitudinal Study of Ageing (2012) show that over half of those questioned were lonely and nine percent described themselves as "severely" or "very severely" lonely.¹⁸ It should be inconceivable that we would even talk about changing the law to make premature death easier at a point in time when loneliness, one of the key indicators of a request for assisted suicide or euthanasia, is reaching arguably epidemic proportions amongst our elderly.

60. One of the most disturbing trends being evidenced in overseas jurisdictions such as the Netherlands and Belgium is the way in which existential factors are increasingly being recognised as perfectly valid reasons for a premature assisted death. Thus, for example, Dutch pro-euthanasia doctor Rob Jonquiere openly recognises that many elderly people will choose euthanasia or assisted suicide for reasons of social isolation: As Jonquiere noted in a 2013 presentation: "The elderly have feelings of detachment ... The elderly have feelings of isolation and loss of meaning. The elderly are tired of life ... Their days are experienced as useless repetitions. The elderly have become largely dependent on the help of others, they have no control over their personal situation and the direction of their lives. Loss of personal dignity appears in many instances to be the deciding factor for the conclusion that their lives are complete."¹⁹

61. What is particularly frightening and distressing, however, is the fact that Jonquiere's response to this is to advocate even more vociferously for these people to have the right to die. "The conclusion that life is completed is reserved exclusively for the concerned persons themselves ... They alone can reach the consideration whether or not the quality and value of their lives are diminished to such an extent that they prefer death over life." All of which leads him to the cold-hearted and brutal conclusion that it is "never for the state, society or any social system"²⁰ to question or otherwise interfere in such a person's decision.

62. This type of existential vulnerability is becoming a feature of the official policy of the Royal Dutch Medical Association which has stated in a Position Paper: " ... the physician must gain or facilitate insight into the suffering and be convinced that the suffering is unbearable and has at least in part a medical basis ... Vulnerability – extending to such dimensions as loss of function, loneliness and loss of autonomy – should be part of the equation physicians use to assess requests for euthanasia. The result of this non-linear sum of medical and non-medical problems, which are usually not in themselves life-threatening or fatal, can lead to lasting and unbearable suffering within the meaning of the Euthanasia Law."²¹

63. The fact that our society has become increasingly ableist and insensitive and unresponsive to the needs of elderly and disabled to feel included and valued – something evident above all in the growing isolation and growing sense of being a burden to the rest of society – debunks any notion that a sincerely and repeated expressed wish for a premature death is always to be accepted as being an authentically free choice.

64. A blind insistence on the merits of 'choice', which unfortunately is where most debates about this issue start and finish in New Zealand, will not help us to achieve a robust level of informed debate because the issue is an inherently complex one as emphasised by Justice Collins in the conclusion to his judgement in the recent High Court Case taken by Lecretia Seales.

An Altered and Impoverished Notion of Care

65. Looked at through a lens of social justice and inclusion, Jonquiere's analysis and conclusion (see above), and the way in which this is becoming embedded in procedures affirmed by the Royal Dutch Medical Association, is deeply disturbing. The intolerable situation that increasing numbers of elderly people find themselves in might well be a direct result of neglect, ageism, abuse, ignorance, lack of funding for services, poor public policies or, worst of all, a lack of will to care from family and/or society.

66. When countries like the Netherlands and Belgium choose not to interfere with people's choice to die prematurely rather than exploring the deeper systemic social and institutional issues, then they have certainly created a very different zone for caring. In effect, this means that the state which governs over the society in which these persons live, the very same society that will in very many cases be complicit in their intolerable condition, can conveniently ignore its responsibility for such neglect.

67. What is happening overseas, in particular in Belgium and the Netherlands, raises the spectre of a society in which elderly people's deepest needs, their need to overcome isolation, neglect and the ignominy of feeling a burden, will be ignored in favour of making it easy for them to dispose of themselves. In such circumstances a so-called choice to die would, for many people, be a choice made out of desperation, a choice made because of a lack of real choices, a tissue-thin choice that is ultimately the product of institutionalised familial and/or societal neglect.

68. An alternative, but equally disturbing interpretation of what is happening in countries such as Belgium and the Netherlands is that we are seeing the emergence of a very different conception of 'care'; a re-defining of care in a way that privileges autonomy without any regard for the limitations on people's freedom – an understanding and approach to care that by many standards is unrecognisable to those who currently work in service industries caring for the elderly and sick, including those employed in mental health and suicide prevention. What has happened overseas will surely also happen in New Zealand if there is a law change that makes euthanasia and/or assisted suicide available as a state-sanctioned way of dealing with people's (predominantly existential and psychological) suffering at the end of life.

69. Given the context in which we live – growing social isolation married with a depleted narrative of care that reflects ableist prejudices, we argue that there has never been a more dangerous time to change the law to make assisted suicide and euthanasia more easily accessible.

The Cloak of Medical Respectability

70. To change the law allowing the State to sanction in advance the death of certain groups of people would be, by itself, a massive break with long-standing societal views and the legal tradition within New Zealand. To impose that role onto doctors and nurses, without any regard for the views of the medical profession in New Zealand and world-wide, would be quite something else. Euthanasia and assisted suicide go against the professional Codes of Ethics of the World Medical Association and, within New Zealand, the New Zealand Medical Association, the Australian and New Zealand Society of Palliative Medicine, Palliative Care Nurses New Zealand, the Health Professionals Alliance and Christian Medical Fellowship.

71. In the first instance this is a question of respect for the integrity of the medical profession and the importance of the law respecting (and not acting to subvert) the ethical judgments made by the profession. The willingness of some members of the profession to act in a particular way does not provide a mandate for unilaterally over-riding the long-standing ethical policies of that profession that exist independently of the law.

72. The question of the State granting its citizens access to assisted suicide or euthanasia and the question of who might carry it out are two very separate questions and need to be considered quite separately.

73. Dutch advocates of euthanasia such as Dr Rob Jonquiere have acknowledged that a focus on the medical profession was a deliberate strategic ploy by pro-euthanasia activists to successfully change the law. In a 2013 lecture he described how the campaigners in The Netherlands originally wanted to argue for euthanasia on the grounds of 'self-determination' (that is, on the basis of unfettered personal choice and without needing to fulfil any particular conditions such as being terminally ill) - effectively euthanasia-on-demand. However, it was deemed necessary at the time for doctors to be involved in order to gain public acceptance.²²

74. The association of assisted suicide and euthanasia with medicine in order to sanitize the process is also noted by others.²³

75. Objections to the involvement of the medical profession are becoming a more noticeable feature internationally. As noted in a 2015 letter to the Editor of the Times signed by 28 physicians and doctors (including the President of the Association for Palliative Medicine of Great Britain and Ireland, and the National Director for Hospice Care Hospice UK): "Doctors want no part in assisted suicide."²⁴ The signatories write: "Quite apart from these practical issues, there is the important ethical question of whether physician-assisted suicide can be reconciled with medicine's cardinal principle of 'do no harm'. Why are those who want to change the law so insistent that assisted suicide should be embedded in clinical practice? Perhaps it is thought that placing such practices within healthcare will help to commend them to a sceptical parliament and public. We do not believe any convincing case has been made for changing the law. But we are clear that, if assistance with suicide were ever to be legalised, it should be kept well clear of healthcare."

76. This issue also features in the 2015 report by the Committee of the Scottish Parliament on the Assisted Suicide (Scotland) Bill, in a section headed "The role of the licenced facilitator".²⁵

77. The fact that, for many people, the primary motivations for requesting assisted suicide or euthanasia are related to existential reasons rather than physical suffering (see above) also takes such requests outside of the areas of specific medical expertise of health professionals. In particular, keeping in mind the potential dangers of patient 'coercion' that are universally recognised by opponents and proponents alike, health professionals, including GP's, are, once again, not trained to detect such. This of course begs the question of whether such coercion can be reliably detected by anyone.

78. Health professionals already exert a high degree of influence, often negatively, on patient decisions because of the power they hold. For example, qualitative research involving persons who have high levels of tetraplegia has shown that they initially experience strongly contradictory feelings about living and dying. Most interestingly, "[t]hese apparently contradictory reports on a clear desire to live, high quality of life, and positive self esteem, yet a history of suicidal ideation and difficulty coping emotionally, may have much to do with the confusion in health care professionals' attitudes regarding saving the lives of these individuals at the acute stage of care; these attitudes are especially important when knowing that professionals are making life and death decisions for these individuals. It appears that we should not judge the ultimate quality of life of others with extreme disabilities based on our own subjective belief systems, or even based on the expressed desires of patients/families during the acute phase of injury."²⁶

79. Involving health professionals in any state-sanctioned regime for assisted death will only further increase their power over patients, something that would be inherently dangerous given the documented "confusion in attitudes" that already exists.

80. Interestingly, support for withdrawing health professionals from State endorsed euthanasia and assisted suicide is increasingly coming from euthanasia advocates, including the likes of so-called Dutch expert Rob Jonquiere. In his Fourth Annual Lecture to the Society for Old Age Rational Suicide in 2013 he states: "Another consideration being discussed now [in the Netherlands] is the possible introduction of 'counsellors in dying'. Starting end-of-life discussions, when severe suffering is caused only by illnesses, Dutch doctors occupy the central position with the present euthanasia law. When such suffering is no longer the only criterion, it is advisable that perhaps a new category of non-medical professionals could be entitled to give assistance - such as 'counsellors in dying'."²⁷

81. As previously noted in paragraph 28 above, the terminology used in the petition shows a failure to appreciate that the question of whether assisted suicide and euthanasia should be lawful in New Zealand is separate from who should carry out such actions.

82. In the words of New Zealand doctors who want no part in euthanasia or assisted suicide: "Doctors are not necessary in the regulation or practice of assisted suicide. They are included only to provide a cloak of medical legitimacy. Leave doctors to focus on saving lives and providing real care to the dying."²⁸ While reiterating our absolute opposition to any form of legalised euthanasia or assisted suicide, we observe that it would be possible to introduce such a regime without the close and direct involvement of doctors or nurses and, moreover, that such a regime would be preferable to one that relied on health professionals.

83. Ethical reasons aside, a regime without doctors and nurses would be preferable because there would be very real negative practical consequences for the therapeutic relationship based on an inherent conflict of interest on the part of the health professional. These arguments are well-articulated by eminent health practitioners around the world and in New Zealand, including Margaret Somerville. Somerville, in a joint article with Boudreau, argues strongly that in instances where it is allowed assisted suicide and euthanasia should be carried out by 'thanatologists' rather than health professionals so that it did not encroach on the physicians' mandate to heal.²⁹

84. Professor Robin Taylor of Otago University New Zealand has also stated: "the arguments in favour of ending the life of a sufferer as a means of eliminating suffering are fundamentally flawed, even though they may be subtly tempting ... the relationship between doctors and their patients would be irrevocably changed, especially for the elderly, if legislation to facilitate assisted suicide were to be enacted."³⁰

85. Likewise, the European Association for Palliative Care has declared as recently as 2015 that 'euthanasia is not a part of palliative care,'³¹ and that the normative frameworks of palliative care and euthanasia/physician-assisted suicide are incompatible.

Summary of Part II

• We believe that it is fear of pain and suffering, rather than pain and suffering itself, which motivates most New Zealanders who express sympathy for euthanasia and assisted suicide. This fear is, even unwittingly, exacerbated by the constant appeal to people's emotions that is generated by the continuous presentation of 'hard cases' in the media.

• It is not sufficient to simply establish a reasonable case for euthanasia or assisted suicide in this or that situation. Members of Parliament have the responsibility of weighing up the impact of a law change on those who would not otherwise volunteer for a premature death, as well as any impact on society as a whole.

• The issues regarding euthanasia and assisted suicide are complex and for that reason cannot be left to or decided by a simple appeal to an individual's right to autonomy and choice. In a democratic society there are many examples of limits imposed on personal choices for the sake of the common good.

• We live in a society that has moved in recent times to a more 'functionalist' approach to assessing the worth of people's lives. Among other things, this is reflected in the way we think about and treat our elderly. New Zealand is becoming increasingly ageist as evidenced by growing rates of loneliness.

• Real life requests for euthanasia and assisted suicide in overseas jurisdictions are inextricably linked to existential issues such as social isolation and the fear of being a burden, rather than actual pain.

• In the Netherlands and Belgium existential issues such as loneliness and fear of being a burden are increasingly recognised as valid reasons for granting requests for euthanasia.

• In these circumstances, the so-called 'choice' to end one's life prematurely may arguably be nothing more than a reaction to a lack of other meaningful choices, reflecting a failure by society to make its most vulnerable feel valued and included.

• The legalisation of euthanasia and/or assisted suicide will lead to an altered and impoverished notion of 'good care' in our society.

• The unchallenged assumption that health professionals will manage euthanasia and assisted suicide lends a cloak of 'medical respectability' to these practices and is out of step with the major medical associations, including those who work day in and day out with persons who are dying.

• In fact, doctors and nurses are not necessary in the regulation or practice of euthanasia and/or assisted suicide.

Part III: The attitudes of New Zealanders towards the ending of one's life and the current legal situation.

The Current Law

86. The compelling benefit of the current New Zealand law prohibiting all forms of assisted suicide is that it constitutes a 'bright line' that applies to every New Zealander – it clearly and unambiguously affirms that suicide and homicide are (i) at odds with the State's commitment to the sanctity of human life and (ii) societally unacceptable as ways of dealing with human suffering. This belief currently underpins the New Zealand approach to suicide prevention.

87. In the event that the laws prohibiting assisted suicide and euthanasia were to change we would then find ourselves in a position of believing there are cases of 'acceptable' (presumably rational) suicide and cases we consider to be 'unacceptable' (irrational) and acting as if we can exercise some sort of meaningful and objective judgement in the service of that distinction. This is problematic from a number of perspectives.

88. Firstly, commenting on the fact that the factors influencing a desire to hasten death are primarily of an existential or psychological nature (see paragraph 56 above), New Zealand bioethicist Professor Grant Gillett argues: "These considerations cast doubt on the sharp divide between 'rational suicide' and requests in dying or any other cases of the desire to bring about one's own death, and vindicate Collins J's rejection of the idea, raised in Carter, of the appeal to sanctity of life creating an overbroad or disproportionate prohibition. If the characterisation of the subjective views of those making decisions to hasten death is as it seems to be, then the sense of control that is sought may be less to do with dignity and more to do with fear and anxiety about what lies ahead ..."³²

89. Secondly and worryingly, the wording of the Voluntary Euthanasia Society (VES) petition, and specifically its inclusive reference to "irreversible condition[s] that make life unbearable", highlights that the criteria for making such judgements will ultimately be left up to individual persons based on what they deem at a particular time is subjectively unbearable for them. This reflects the development of practice in jurisdictions such as Belgium and the Netherlands, and to some extent in States such as Oregon (see Part IV below). At that point, rather than ending up with a 'some suicides are ok' law, we will have effectively created a situation that allows virtually anyone (other than those held under the Mental Health Act) to justify their suicide on the basis that their suffering, whether physical or existential, is "unbearable" for them. In other words, it will be virtually impossible in reality to make any sort of meaningful objective judgement about 'acceptable' and 'unacceptable' cases of suicide. Any distinction will, in practice, be a totally arbitrary one.

90. Thirdly, and most importantly, a law change effectively requires us to cede the fundamental idea that underpins all our suicide prevention programmes – the belief that suicide is never an acceptable way of dealing with suffering. The messages contained in our suicide prevention programmes will then be, at best, confusing and at worst contradictory. In a country where, relative to other countries, our suicide rates are unacceptably high, this is not just ill-advised but potentially dangerous. Evidence from overseas regarding the effect of legalising assisted suicide on other suicides is, admittedly, mixed. Some studies are showing some correlation while others are inconclusive. What we can take from this is that we cannot yet be sure that there would be no correlation in New Zealand.

91. Even if it were proven that was no such correlation in overseas jurisdictions where assisted suicide is legal, we would still need to prove that, in a country such as ours where suicide rates are tragically high by comparison with other countries, there was no risk for us.

Any Limits around Euthanasia and/or Assisted Suicide are Arbitrary

92. From a legal and public policy perspective, the debate about euthanasia and assisted suicide can be expressed in terms of the merits of staying with a long-established boundary that provides a bright line and that is 'natural', versus the merits of exchanging that boundary for one that is arbitrary, easily crossed and hard to defend." Baroness (Elizabeth) Butler-Sloss, a former President of the Family Division of the High Court in the United Kingdom, puts it well: "Laws, like nation states, are more secure when their boundaries rest on natural frontiers. The law that we have rests on just such a frontier - it rests on the principle that involving ourselves in deliberately bringing about the deaths of others, for whatever reason, is unacceptable behaviour. To create exceptions, based on arbitrary criteria such as terminal illness or mental capacity, is to create lines in the sand, easily crossed and hard to defend."³³

93. Even a cursory analysis of what has happened in the Benelux countries shows the arbitrariness of the boundaries that were set up around euthanasia and assisted suicide. In these countries, the debates that preceded the law change focused largely on 'difficult cases' (just as we are now seeing in New Zealand) involving mostly elderly persons with terminal illnesses, near the end of life and able to give consent. The arguments employed at the time were very much focussed on the need to help such people avoid unnecessary physical pain.

94. However, the current situation in Belgium and the Netherlands is that euthanasia is available to people who are not dying, persons with dementia and others who cannot give informed voluntary consent such as neonates and children. There is also an increasing uptake from persons with mental illnesses such as depression (see Part IV) below.

95. We believe that the reason for this is that any law, no matter how well intentioned, carries within itself the seeds of its own expansion. Once we allow access to euthanasia or assisted suicide for a particular group (e.g. those with a life-limiting progressive illness such as cancer) whether on the basis of exercising 'choice' or on the basis of so-called relief of suffering, it is quite logically argued that it is discriminatory not to allow others to have that same right to choose and/or discriminatory not to allow it for other persons who are also suffering, even if the source of that suffering is different. As noted in a report for the Royal Society of Canada: There is "no principled basis for excluding people suffering greatly and permanently, but not imminently dying."³⁴

96. What we are also seeing in the Netherlands and Belgium, as well as in Oregon, is a dramatic year upon year statistical increase in the numbers of people accessing euthanasia and/or assisted suicide. The sharp increase in demand belies the argument that changing the law is about allowing the small number of high-profile cases that attract media attention to proceed without threat of prosecution. "The point is that legalisation doesn't just reproduce the status quo in legal form ... The reality is not like this. Experience shows that enabling laws have a tendency to encourage the acts they enable – because they change the law's underlying social message."³⁵

97. The more recent concerted push in both Belgium and the Netherlands for euthanasia to be available for persons 'tired of life' is further evidence of the arbitrariness of the boundaries set up around euthanasia and assisted suicide.

98. In short, the demand for euthanasia cannot be limited to a carefully defined group. We would expect the same erosion of boundaries and safeguards to happen here as has happened overseas given the already existing societal ambivalence towards people who are perceived as having little or nothing to contribute to society while 'swallowing up' large amounts of health resources.

Voluntary Euthanasia will lead to Non-voluntary Euthanasia

99. For very similar reasons to those outlined above, any legalisation or decriminalisation of euthanasia will inevitably lead to non-voluntary euthanasia. A society that sanctions euthanasia has already accepted that euthanasia is a merciful good for suffering patients. In which case, it comes to be seen as a beneficent act. Once the principle of beneficence has been redefined to be inclusive of euthanasia, then this comes to be seen as over-riding the importance of obtaining personal consent. In the case of incapacitated patients, euthanasia is argued to be a good they would have consented to if they could. Active consent thereby becomes replaced by presumed consent.

100. Worryingly, the basis for presuming that this is what a patient wants will come from the experiences of those individuals who have sought voluntary euthanasia as well as health professionals and others whose views are largely informed by the existing social prejudices about what it is like to live with a disability. The various conditions, illnesses and psychiatric disorders which 'inflict' the quality of individual lives of those seeking voluntary euthanasia quickly become the 'markers' for persons unable to request it for themselves – consent is then nothing more than a 'window of opportunity' that simply does not exist for certain incapacitated patients.

101. In jurisdictions where euthanasia and physician-assisted suicide are already legalised, the move from voluntary to non-voluntary medically assisted euthanasia has indeed been a very small step. In the Netherlands it has always been the case that it is doctors who make the final decisions about end of life; patients can request it but doctors must ultimately decide. In other words, it is always the doctors who determine whether a person would be 'better off dead'.³⁶ When doctors are already the ones judging whether a person would be 'better off dead', there seems little reason why they could or should not make this decision for comatose or incompetent patients without the need for 'informed consent'. Hence, the small step.

102. The 'logical' and 'small step' that leads doctors to become the arbiters or judges of life and death for people who can't consent is where the changed dynamic between doctor and patient that is a consequence of medically assisted state-sanctioned killing becomes most evident. Critically, this shift highlights the power that medically assisted death will give to health professionals while simultaneously exposing the point where a potential break-down in trust between doctors and their patients is most likely to occur. Above all, it is a shift that strikes at the core of a non-judgemental caring that has long been the backbone of the medical expression.

103. In this way, the involvement of health professionals in euthanasia will introduce into some of our most important institutions – the medical profession, the nursing profession, hospitals and rest homes – the 'ethic' that it is acceptable to kill, with or without consent; an ethic that will become socially embedded and routinely identifiable as a 'normal' state-sanctioned action. Such an 'ethic' is contrary to, and will irrevocably harm these institutions and the human virtues that are most treasured in our society.

104. While the step (or slide) from voluntary to non-voluntary euthanasia will occur whoever the ultimate agents of euthanasia are, and while we reiterate our opposition to all forms of euthanasia and assisted suicide on the basis that they are both unnecessary and dangerous, we observe that, in the event either or both practices were implemented, we would be better off with a system that respected medical ethics by excluding all health professionals from having a direct role in the process. As previously noted, all of the major medical associations are opposed to euthanasia and assisted suicide as are a majority of doctors and "Doctors are not necessary in the regulation or practice of assisted suicide. They are included only to provide a cloak of medical legitimacy" (see paragraph 75 above).

New Zealander's Attitudes are Culturally Shaped

105. It is important to recognise that people's particular stance towards euthanasia and assisted suicide is significantly affected by their cultural context. Māori and Pasifika, for example, whose anthropological worldviews are characterised by a more collectivist understanding of the human person, are, in general, more inclined to oppose a law change than people from cultures that reflect a more individualistic view of the person.

106. New Zealand researchers Malpas, Mitchell and Johnson confirm the existence of a strongly individualistic approach as well as more collectivistic approaches within New Zealand in a qualitative study which examines the underlying attitudes of persons who are members of the Voluntary Euthanasia Society. Commenting on their finding that the fear of being a burden is a significant motivating factor for those supporters of euthanasia and assisted suicide they write: "It is important to note that all our participants identified as being of European descent. Thus we were unable to explore some of the particular issues of significance that may have arisen in the context of end of life decision-making for people who may have very different outlooks around dying and death. For instance, in communities where members have a more collectivist approach towards how decisions are made across the life span (as opposed to more individualistic approaches), support for medical hastening of death may be viewed very differently."³⁷

107. It is readily apparent that when people of a Māori or Pasifika cultural heritage speak out in opposition to assisted suicide and euthanasia, their views are anchored in very different understandings of the person, of the place of the elderly in society and of the obligation to show care to the sick and disabled than is presented through the dominant and reductionist Western paradigm. Thus, for example, Amster Reedy writes: "We bring people into this world, we care for them right from the time they are conceived, born, reared, in health, sickness and in death. The rituals still exist for every part of our lives – we just need to have faith in our ancestors. Euthanasia is foreign to Māori and has no place in our society."³⁸

108. The same can be said about Tokelauan, Samoan and Cook Island Pasifika groups. As Penehe Patelehio writes: "When someone is ill or dying, the idea of assisted-suicide or euthanasia is entirely foreign to us. There is no word in our language for this concept and consequently it does not enter into our thinking. The opportunity to care for and look after someone who is ill or dying/suffering is seen as a blessing even though it may present significant financial and other challenges. At such times the extended family and community networks come to the fore – it is common for immediate and extended family and community members to visit, provide food, and massage and converse with the person who is ill. No-one would ever be left to die alone. Supporting the family and the person concerned through ongoing daily practical and emotional support enables the sick person to find ways to feel better and achieve the best possible quality of life during the latter stages of their life journey."³⁹

109. Within New Zealand, the existence of the traditional Māori and Pasifika worldview (as expressed by the likes of Reedy and Patelehio) alongside the strongly individualist perspective that oftentimes characterises the dominant Western worldview, highlights a significant cultural clash. This needs to be seen as a critical issue when contemplating the wider societal impacts of making euthanasia and/or assisted suicide legally available in New Zealand.

110. To fail to take this into account would be to unilaterally privilege a very mono-cultural idea of autonomy that clashed with the cultural understanding and thinking of significant numbers of New Zealanders. The imposition of a dominant culture's narrative about the care of the elderly and dying would undermine the rightful tikanga of Māori as well as other cultures, while ultimately undermining the assumptions and values of those other cultures. That this might be 'unwitting' makes it no less serious.

111. It is critical that the voices of other cultures are heard. Having made that point, it is our observation that the process of a Health Select Committee Investigation itself reflects a very Western way of consulting that makes it difficult for persons from other cultures to easily engage. We therefore recommend strongly to the committee that they seek to complement the submission process with a more direct approach to other cultural groups, in particular Māori and Pasifika.

Prevention of Premature Death

112. We are aware of the argument that the availability of euthanasia or assisted suicide contributes to people's 'peace of mind' and provides 'comfort'. Support for this is inferred, we suspect, from the significant percentage of the people who receive lethal prescriptions in Oregon but do not end up using them. As far as we are aware, this is pure speculation, and no studies have been undertaken as to why people chose not to use the prescription, or whether the existence of the option was a 'comfort' or a source of distress. It is possible to hypothesise both.

113. Further, if those who did not use the prescription can be inferred to have made that decision because they had found 'peace of mind', there is no reason to conclude that it was the presence of the drug that caused that. People may have found 'peace of mind' through other means, including the support of family and/or high quality palliative care, remembering that the goal of palliative care is to attend to people's suffering and needs; emotional, psychological, social and spiritual as well as physical needs.

114. Granting people access to lethal medication is a dangerous way of providing 'comfort' or peace of mind. It is also unnecessary in the New Zealand context because, as already noted, palliative care provides a highly effective, ethical and socially enhancing way of achieving this. Good palliative care physicians and their teams do this all of the time as part of their daily work.

115. There is also the argument that having legal access to euthanasia or assisted suicide will enable some people to live longer because those who are of a firm mind to suicide might, in some circumstances, have to do so at an earlier point in time – at a point in time when they were still capable of dying by their own hand, so to speak. The obvious riposte to this is that any suicide or premature death cuts short a person's (natural) life-span. However, even putting that aside, this argument is problematic for a number of significant reasons.

116. Firstly, even if allowing assisted suicide or euthanasia will mean some people will live longer than they otherwise might have, from an ethical perspective there is something inherently contradictory about offering (state-sanctioned) suicide (or euthanasia) to all people as a way of preventing suicide.

117. Secondly, there is a proliferation of verifiable anecdotes which make it clear that many people have lived longer precisely because euthanasia and/or assisted suicide was not legally available at a particular and transient stage of their prognosis. They include stories of persons who much later found out that they were wrongly diagnosed as having a terminal illness.

118. Persons with tetraplegia are a good example of the transience of suicidal ideation that is experienced by persons who have undergone a major health trauma that clearly fits within the criteria of the VES Petition. In a series of follow-up studies of individuals with High Tetraplegia it was found that while many individuals may have considered suicide initially, there was little indication of persistent suicidal ideation as time went on. The Phase II study, 10-21 years post-injury, indicated that 'all were glad to be alive'. The Phase III study, 14-24 years post-injury, found that 94 percent of VI (Ventilator Independent) persons and 88 percent of VA (Ventilator-assisted) persons were 'glad to be alive'. In fact, when asked what changes would improve the quality of their lives, the most prominent categories were financial issues, transportation, and attendant care issues.⁴⁰

119. Thirdly, the argument falls into the trap of assuming that what is being sought by the VES petitioners would apply only to a very narrow category of persons who have a terminal illness and are imminently dying. As is clear from the wording of the petition, the inclusion of the notion of an "irreversible condition which makes life unbearable" means that what is sought includes persons who are not dying. For this group of people any change to the legal status quo can only result in an increased risk of premature death.

120. Fourthly, the evidence from States in the US where assisted suicide is legally available does not point to a drop in the overall numbers of non-assisted suicides after the law has been changed. The overall effect, as Jones and Paton have shown, is that there is on average a 6.3% increase in all suicides (including assisted suicides).⁴¹

121. Finally, and not withstanding what we have just stated, there is now evidence which shows that "Bereavement by suicide is a specific risk factor for suicide attempt among young bereaved adults, whether related to the deceased or not. Suicide risk assessment of young adults should involve screening for a history of suicide in blood relatives, non-blood relatives and friends." Without knowing the extent to which this might apply to the children or grandchildren of those who have died by way of a medically-assisted suicide, the risk identified by this latest piece of research demands cannot be discounted. Until it can be discounted, the precautionary principle demands that we exercise caution and adds further strength to the argument that we maintain the legal status quo.⁴²

122. If we are truly concerned about helping people live well and live longer then the legal status quo is by far the best way to achieve this outcome rather than making suicide easier for everyone to access on the basis of an argument that there may be a few demonstrable cases where people might live longer.

Summary of Part III

• The current law prohibiting euthanasia and assisted suicide provides a 'bright line' that protects all New Zealanders equally.

• Legalising euthanasia and/or assisted suicide rests on the idea that 'some suicides are acceptable' and that we can easily distinguish acceptable cases from unacceptable cases. In the real world this is problematic.

• The criteria proposed by the VES Petition make it clear that judgements about an "unbearable life" will ultimately rest with an individual. In practice this creates a situation that allows virtually anyone to justify a premature death.

• A law change effectively requires us to cede the fundamental principle that underpins all our suicide prevention programmes – the belief that suicide is never an acceptable way of dealing with suffering and that we can always do something.

• Any limits placed around access to euthanasia and/or assisted suicide are arbitrary because any law carries within it the seeds of its own expansion.

• Once we allow access to euthanasia or assisted suicide for a particular group, it is logically argued that it is discriminatory not to allow it for other persons who are also suffering, even if the source of that suffering is different.

• New laws have a tendency to encourage the acts they enable because they change the underlying social message. This is evidenced, among other things, by the broadening of boundaries in overseas countries where assisted death is available.

• Any form of voluntary euthanasia will inevitably lead to non-voluntary euthanasia. It is a logical and small step because when, as a society, we start judging whether a person would be 'better off dead', there is no reason why the same decision could or should not be made for comatose or incompetent patients.

• People's views about the acceptability of euthanasia and assisted suicide are culturally shaped and proponents of assisted death largely work out of a strongly individualistic narrative as opposed to a more 'collectivistic' approach to understanding the human person.

• The current Health Select Committee process is itself reflective of a very Western way of consultation. We urge the Health Select Committee to complement it with a more direct approach to other cultural groups, in particular Maori and Pasifika.

• The argument that allowing euthanasia and/or assisted suicide could mean that certain individuals might live longer, is offset by the risks a law change would pose for many other people. Further, stories abound showing that many people are still alive only because the current law prohibits both euthanasia and assisted suicide.

Part IV – International Experiences

123. Examining the experiences of other countries which have legalised euthanasia and/or assisted suicide provides useful information and guidance as to the likely outcomes of a law change should New Zealand make similar legislative changes. However, because New Zealand has its own unique population and history, we also need to keep in mind questions such as whether euthanasia/assisted suicide is a 'good fit' with our culture; how legalising euthanasia/assisted would impact on our particular population given the current context in which we live; and how it would affect our current health service configuration and culture. These questions remind us that evidence from overseas may not necessarily provide an accurate assessment of the impact of a law change in New Zealand.

124. Countries that have legalised euthanasia/assisted suicide include Belgium, the Netherlands, Luxembourg and four states of the United States (Oregon, Washington, Vermont and California). In Switzerland people who assist in the suicide of another 'for selfless reasons' will not be prosecuted. In Canada the Federal Government is preparing legislation in response to a 2015 Supreme Court Ruling.

125. These countries have all incorporated certain 'safe-guards' to ensure that the legislation is not abused. These include (1) that consent is provided by a mentally competent patient; (2) that euthanasia or assisted suicide is restricted to those with 'terminal' conditions who are likely to die within a limited time; (3) that only doctors can administer euthanasia or must be present; (4) that palliative care be first offered as an alternative; and (5) that all cases must to be reported to an authority.

126. It is increasingly accepted by observers that certain developments and outcomes in Belgium and the Netherlands represent a step too far. There are various signs that the original intent of the legislators is being thwarted in these countries as well as the law itself being violated. In light of that, Oregon is often cited by advocates of legislative change as an example where legislation has 'worked well'. For this reason we will treat Oregon separately (see paragraph 146 below).

International Experiences: Belgium and the Netherlands

Consent

127. In both Belgium⁴³ and the Netherlands^44,45 there is solid evidence that euthanasia in these countries is regularly carried out without an explicit patient request, even though that is required by law.

128. The reasons for not discussing euthanasia or not obtaining consent include that patients were comatose, or suffering from dementia. However in situations where consent could have been obtained but wasn't, the decision was made because euthanasia was 'clearly in the patient's best interest' or because the discussion 'would have been harmful'.⁴⁶ This sort of behaviour by health professionals highlights the fact that the introduction of so-called 'voluntary euthanasia' is inevitably accompanied by a growth in the exercise of medical paternalism.

129. There is also evidence that in cases where consent was not obtained from the patient, doctors were more likely to consider the wishes of the family and to rely on their own assessment that life should not be 'needlessly prolonged'.⁴⁷

130. While these decisions could be called 'compassionate responses' to what might have been futile medical situations, it remains the case that physicians were deciding 'in the patients' best interests', without knowing clearly what the patients wanted.

131. As already noted in Part III, it is not surprising that physicians, having accepted the desirability of euthanasia for patients who makes a voluntary request, do not want to deny such a 'benefit' to other patients simply because they are not able to make the request. Ironically, whatever one's attitude towards such a 'paternalistic' response, it constitutes the denial of patient autonomy, the value used by most advocates of change to argue their case for assisted death in New Zealand.

Competence to consent

132. There is also evidence that in these countries many patients' competence to consent is in doubt. Numerous studies have found that a desire to die is linked with depressive symptoms,^{48,49,50,51,52} and research shows the prevalence of depression in terminally ill patients ranges from 3.7-58%, depending on the study, the type and stage of disease, setting and population characteristics. In addition, it has been found that a total of 5-15% of people with cancer meet the criterion for major depression, and another 10-15% present with symptoms that are somewhat less severe. In people with significant levels of physical impairment, at least one-quarter of those with advanced disease experience a clinically relevant and treatable depression.⁵³ Vachon notes that "depression and hopelessness, characterised as a pessimistic cognitive style, rather than an assessment of one's poor prognosis, seem to be independent determinants of desire for hastened death."⁵⁴

133. However, in the Netherlands and Belgium, the proportion of patients referred for psychiatric assessment is much lower than would be expected given evidence of the prevalence of depression and other mental illnesses in patients suffering terminal illness.

134. In the Netherlands it is estimated that about 4% of all requests for physician-assisted death are referred for psychiatric consultations.⁵⁵ In Washington State in both 2013 and 2014, only 4% of participants were referred for psychiatric/psychological evaluation.⁵⁶ In Belgium 5.2% were referred (79/1526) for the years 2008/09⁵⁷ and 9.5% (307/3239) for the years 2012/13.⁵⁸

Widening of scope

135. There has also been a widening of categories in Belgium and the Netherlands. In the Netherlands it is now no longer necessary that a patient's condition is 'terminal'⁵⁹, and patients with mental illness including depression are now eligible for euthanasia.⁶⁰ Likewise, in Belgium, a 'terminal' condition is not necessary and patients with psychiatric conditions can request euthanasia.⁶¹

136. 'Exit', a Swiss organisation that provides physician-assisted suicide, has recently extended its services to elderly people who are not terminally ill.⁶² Exit now defines assisted suicide as "the right to the freely responsible death of a very old person wishing to die". This means that those who are advanced in age will no longer have to prove to the same extent as younger people that they are terminally ill in order to receive services.⁶³

137. In the Netherlands a law change in 2001 allowed for children aged 12-16 years to be euthanized with parental consent⁶⁴ and in Belgium, in 2014, children of any age became eligible for euthanasia.⁶⁵ If the law was changed in New Zealand, there would inevitably be pressure to include children; Maryan Street has already indicated an openness to including children by refusing to rule it out: "Application for children with a terminal illness was a bridge too far in my view at this time. That might be something that may happen in the future, but not now."⁶⁶

138. Professor Wim Distelmans described as a 'leading proponent of the euthanasia law in Belgium, explained the decision to allow children to request euthanasia as being consistent with the already existing right, guaranteed in law, that all patients have to refuse treatment, "even if this treatment can save their lives. This right is not related to age." In New Zealand children of all ages already have the same right to refuse treatment under the Code of Health and Disability Services Consumers' Rights.

139. In the Netherlands in 2013, the suffering judged as warranting euthanasia was caused by dementia in 97 cases notified to regional euthanasia committees (compared with 42 in 2012) and by a mental disorder in 42 cases (compared with 14 in 2012 and 13 in 2011).⁶⁷

140. In Belgium, the number of cases of euthanasia for neuro-psychiatric disorders was 120 (4%) in 2012/13, up from 5 (1%) in 2006, and for 'multiple pathologies' was 166 (5%) in 2012/13, up from 6 (1%) in 2006.⁶⁸

141. The facts from Belgium and the Netherlands all point to a significant widening of the scope of the laws

Reporting

142. Various studies have also established that large numbers of cases of euthanasia in Belgium and the Netherlands are not reported, as is required by law in both countries. One study in Belgium found that only half of all estimated cases of euthanasia were reported to the Federal Control and Evaluation Committee.⁶⁹ In the Netherlands it was found that about 20% of cases of euthanasia were not reported, as is required under the Euthanasia Act.⁷⁰

143. In addition, unreported cases were usually dealt with less carefully than reported cases; in particular, a written request for euthanasia was more often absent; other physicians and palliative care specialists were consulted less often; opioids and sedatives were more often used than barbiturates and neuromuscular relaxants; and the drugs were more often administered by a nurse alone.⁷¹

144. The Control Commission (Belgium) has stated that it 'does not have the possibility of assessing the number of reported euthanasia cases versus the number of euthanasia cases actually performed', which casts serious doubt on the ability of authorities to exercise an effective level of control.⁷²

Normalisation

145. It can be surmised that the changes in practice over time described above have occurred at least in part because euthanasia and assisted suicide have become 'normalised' in these societies. Patients, families and physicians have come to view euthanasia/assisted suicide as not just another option but a highly desirable one within the range of possible responses to difficult medical or psychological problems. This represents a significant shift from seeing these practices as an extreme response to be considered in the most dire circumstances, as was originally intended by legislators. The shift is borne out by the continuing increase in numbers of those who both seek, and are successful in obtaining, assistance to end their lives prematurely. The graphs below provide an illustration of this:

Data from Dutch Regional Euthanasia Review Committees: Annual Reports 2002-2013. Example webpage: http://www.livinganddyingwell.org.uk/publications/research/dutch-regional-euthanasia-review-committees-2004-annual-report

Data for years 2003 to 2011 from: De Diesbach, E., et al. "Euthanasia in Belgium: 10 years on." Brussels: European Institute of Bioethics 3 (2012).

Years 2012 and 2013 from: http://www.ieb-eib.org/fr/pdf/rapport-euthanasie-2012-2013.pdf

International Experiences – Oregon

146. As noted above, advocates of euthanasia and assisted suicide, while admitting the problems of Belgium and the Netherlands, are increasingly referring to Oregon as an example that abuses can be avoided and legalisation can be made 'safe'.

147. However, data referring to Oregon shows that there are solid and serious reasons to be concerned about the safety of the Oregon legislation.

Competence to consent

148. Ganzini et al examined the prevalence of depression and anxiety in terminally ill patients in Oregon who requested assisted suicide and found that one in four had clinical depression. They noted that while more than three quarters of people who actually received prescriptions for lethal drugs did not have a depressive disorder, "our findings indicate that the current practice of legalised aid in dying may allow some potentially ineligible patients to receive a prescription for a lethal drug."⁷³

149. In Oregon, there has also been a steep decline in the proportion of people referred for psychiatric assessment over the first five years after legalisation (average 22% over five years) compared with the most recent five years (average 2.3%).⁷⁴

150. These figures indicate one of two things: either that (i) doctors are not complying with the law (which requires that if physicians believe the patient's judgment is impaired by a psychiatric or psychological disorder, the patient must be referred for a psychological examination), or (ii) a degree of 'normalisation' of the desire to commit suicide has taken place over the years since the law changed, so that doctors now rarely consider depression or other mental disorders as relevant factors in these patients' decision-making.

151. Both conclusions point to ineligible patients receiving lethal prescriptions and to the failure of the safety measures.

Widening of scope

152. In Oregon, data is collected on 'end of life concerns' for patients who die under the Death with Dignity Act. The most common reasons were psycho/social concerns such as 'losing autonomy' (91.4%), 'less able to engage in activities making life enjoyable' (86.7%),' loss of dignity' (71.4%).⁷⁵

153. By contrast, 'Inadequate pain control or concerns about it' was cited as a reason by only 31.4%.

154. In Oregon, where it is not necessary for a doctor to attend the ingestion of the lethal drug, the actual circumstances of ingestion are unknown in nearly 40 percent of deaths. That is, it is simply not possible to know the circumstances in which the death occurred, whether the person took the drug willingly or whether there were complications. In 2014, prescribing physicians were present at the time of death for only 13.9% of patients.

155. As with Belgium and the Netherlands, there has been a continuing increase in both the number of prescription recipients and the number of deaths by assisted suicide in Oregon since the law change in 1997. This is illustrated in the graph below. While it is certainly true that across the population of Oregon the uptake of assisted suicide is significantly lower that the incidence of euthanasia in places such as Belgium and the Netherlands, what is of greatest concern is the year upon year percentage increase which has peaked at 43% in 2014.

https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf

Other concerns

156. One of the requirements of the Death with Dignity Act in Oregon is that "the patient has a terminal illness that would, within reasonable medical judgment, cause death within six months." However, in 2014, the range of days between first request and death was 15-439.⁷⁶ This indicates that some patients (it is not known exactly how many) live beyond the six months that was expected/predicted, which illustrates the difficulty of prognosis.

157. Over the years 1998-2013, 22 patients regurgitated medication and 6 regained consciousness. In an additional 244 cases (plus 85 for 2014), the existence of complications is 'unknown'.

158. There is also evidence that the 'two doctor' safeguard is easily and frequently being subverted by so-called 'doctor shopping' in Oregon as well as in Washington State. Dr. Peter Goodwin, a former Medical Director for assisted suicide advocacy group Compassion and Choices has stated that "about 75 percent of those who died using Oregon's assisted suicide law through the end of 2002 did so with the organization's assistance ... In 2008 the proportion of C&C PAS [Compassion & Choices Physician Assisted Suicide] deaths significantly increased to 88 percent (53/60) of all reported deaths. And in 2009, 57 of the 59 assisted suicide deaths were Compassion & Choices clients. But then they ceased to provide further information."⁷⁷

159. While Oregon is increasingly appealed to as working without problems, it is actually impossible to corroborate such claims because there is, ultimately, no scrutiny of how requests for assisted suicide are being carried out in practice. As then Director of the Oregon Department of human Services stated in 2005: "We are not given the resources to investigate [assisted-suicide cases] and not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves."⁷⁹

Summary of Part IV

• The safeguards put in place in countries that have legalised euthanasia/assisted suicide have not prevented a widening of scope. In Belgium and the Netherlands persons with dementia and mental illness, as well as children and young people, can now qualify including many who can't choose for themselves.

• In Belgium and the Netherlands doctors do not always report cases of euthanasia, as is required by law.

• In spite of what the laws clearly say, there continue to be cases where consent from competent patients is not obtained.

• In Oregon, very few patients are referred for psychiatric assessment in spite of evidence that depression and other mental health disorders are common in terminally ill patients.

• There is evidence that the 'two doctor' safeguard is subverted by 'doctor shopping' in both Oregon and Washington State.

• There is little or no inquiry into the well-documented failures to adhere to regulatory regimes.

• In all countries that have legalised euthanasia or assisted suicide, there has been a continuing and relentless increase in the number of deaths.

• Contrary to the claims that euthanasia and assisted suicide are an expression of an individual's choice to end their life, it is doctors in these countries who are ultimately given the authority to make judgements about which lives are worth living.

• Involving health professionals in legalised killing represents a fundamental transformation of the ethical tenets of the medical profession and will inevitably change the quality of the relationship between doctor and patient.

Conclusion

Euthanasia and assisted suicide are unnecessary and dangerous – unnecessary because of the high quality of palliative care that is available and dangerous because, as reflection on overseas experience shows, any law contains within itself the seeds of its own expansion.
In spite of lawmakers' best intentions, there are no adequate legal safeguards that can be put in place to protect vulnerable groups such as children, the elderly, or those with disabilities should euthanasia or assisted-suicide be legalised.
The question that some have been asking of MP's is whether they are brave enough to change the law to accord with the wishes of the majority. Firstly, it does not take a lot of bravery to go along with a so-called majority opinion. It takes more bravery to do what is the right thing, whether or not this is in step with the majority. Secondly, it is our belief that the more people become aware of the intricacies and complexities of the arguments and issues surrounding euthanasia and assisted suicide, the less likely they are to support it.
We acknowledge that euthanasia and assisted suicide make sense from within a particular narrative about the person and society, that is, one that reflects a 'functionalist' understanding of the human person. For this reason it is important when looking into the complexities of this issue to take a 'big-picture' approach and critique the underlying narrative and the assumptions that it rests on. This issue must not be decided on the emotions of a few hard cases.
All of this explains why significant numbers of persons who admit to having a personal sympathy for euthanasia or assisted suicide based on the hard cases are ultimately opposed to the legalisation of both of these practices.
It is also important to understand that personal choices that people make are always contextually bound. The current New Zealand context, characterised as it is by 'functionalism', increasing ageism that is manifesting itself in growing elder abuse and an increase in the social isolation of the elderly, and a deficit understanding and fear of disability means, in our view, that there has never been a more dangerous time to make suicide and/or euthanasia more easily available.
The answer to the existential suffering that many people experience, and which drives requests for euthanasia and assisted suicide in overseas jurisdictions, is not to make it easier for people to end their lives but to continue to improve access to palliative care for all New Zealanders.
It is our informed view that when all of the risks are objectively assessed and weighed up, any perceived benefits for a small minority of persons would be far outweighed by far larger numbers being exposed to the very real dangers of a premature death.
The current legal status quo remains the most responsible option for New Zealand at this time.

 

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Endnotes

[1] We understand that the standard of palliative care, where it is available in New Zealand, is one of the highest in the world. At the same time we believe that there is some way to go in terms of helping all New Zealanders, especially those in rural areas, to access the best levels of care available. 

[2] See Seales v Attorney-General [2015] NZHC 1239 [4 June 2015] at 9.

[3] C. Gill, "No, we don't think our doctors are out to get us: Responding to the straw man distortions of disability rights arguments against assisted suicide.," Disability and Health Journal 3(2010)., p. 36.

[4] See, for example, ibid., p. 31.

[5] Ipsos Marketing, "Survey among the Canadian population about end of life issues," (Canada: Ipsos Marketing, 2013) p. 5.

[6] See http://www.lifechoice.org.nz/about, accessed 27 January 2016.

[7] European Association for Palliative Care Ethics Task Force, "Euthanasia and physician-assisted suicide: a view from an EAPC Ethics Task Force," Palliative Medicine 17(2003), p. 99. 

[8] G. Gillett, "Lecretia Seales and Aid in Dying in New Zealand," Journal of Law and Medicine 23(2015)., p. 315 (emphasis added).

[9] Finlay, I. "Assisting Suicide Is No Therapy." Nordic Journal of Palliative Care 4 (2008), p. 9.

[10] R.A. McCormick, “How Brave a New World”.

[11] K. Hitchcock, "The right to die or the right to kill?,"  The Monthly(2015), https://www.themonthly.com.au/issue/2015/december/1448888400/karen-hitchcock/right-die-or-right-kill .

[12] Brian Kelly et al, “Terminally Ill Cancer Patients’ wish to Hasten Death” (2002) 16 Palliative Medicine 339.

[13] Jennifer Jones et al, “Symptomatic Distress, Hopelessness, and the Desire for Hastened Death in Hospitalized Cancer Patients” (2003( 55 J Psychosom Res 411.

[14] C Owen et al, “Cancer Patients’ Attitudes to Final Events in Life: Wish for Death, Attitudes to Cessation of Treatment, Suicide and Euthanasia” (1994) 3 Psycho-Oncology 1.

[15] See Oregon Public Health Division, Oregon’s Death with Dignity Act—2014, Table 1 at 5 <http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf>

[16] See: Malpas, P, K Mitchell, and M Johnson. "’I Wouldn't Want to Become a Nuisance under Any Circumstances’ - a Qualitative Study of the Reasons Some Healthy Older Individuals Support Medical Practices That Hasten Death." New Zealand Medical Journal 125, no. 1358 (2012): 9-19; and McLeod, S. “Assisted dying in liberalised jurisdictions and the role of psychiatry: A clinician’s view” Australian & New Zealand Journal of Psychiatry, 46(10), 936–945:  “Contrary to what may have been predicted (and is perhaps assumed by the general public), people request assisted dying, if they have the legal opportunity to do so, because of psychosocial, and not physical, symptoms.” (at 939)

[17] See La Grow, S. and S. Neville (2012) ‘Loneliness and self-reported health among older persons in New Zealand’, Australasian Journal on Ageing, 31 (2), pp.121-3.

[18] See C. Waldegrave, P. King, and E. Rowe, "Aucklanders 50 and over: A health, social, economic and demographic summary analysis of the life experiences of older Aucklanders," (Auckland: Auckland Council, 2012) pp. 66-67.

[19] See Jonquiere, R. Fourth Annual Lecture to the Society for Old Age Rational Suicide, London, September 20, 2013 http://www.soars.org.uk/index.php/pages.

[20] Ibid.

[21] The role of the physician in the voluntary termination of life: KNMG Position Paper, June 2011, p. 40, emphasis added.

[22] See Jonquiere, R. Fourth Annual Lecture to the Society for Old Age Rational Suicide, London, September 20, 2013 http://www.soars.org.uk/index.php/pages, accessed 2 March 2015.

[23] See for example Boudreau, JD and MA. Somerville. "Euthanasia Is Not Medical Treatment." British Medical Bulletin 106 (2013): 45-66 p. 46.

[24] See http://www.thetimes.co.uk/tto/opinion/leaders/article4401990.ece, accessed 7 May 2015. NE

[25] Health and Sport Committee, "Stage 1 Report on Assisted Suicide (Scotland) Bill".

[26] Hall, Karyl M. et al. Follow-up study of individuals with high tetraplegia (c1-c4) 14 to 24 years postinjury. Archives of Physical Medicine and Rehabilitation , Volume 80 , Issue 11 , p. 1513, emphasis added.

[27] See Jonquiere, R. Fourth Annual Lecture to the Society for Old Age Rational Suicide, London, September 20, 2013 http://www.soars.org.uk/index.php/pages, accessed 2 March 2015.

[28]  See http://doctorssayno.nz/

[29] Boudreau, JD., and MA. Somerville. "Euthanasia Is Not Medical Treatment." British Medical Bulletin 106 (2013): 45-66.

[30] The New Zealand Herald, 10 December 2012, J. Gibb, "Professor speaks against voluntary euthanasia," available at http://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=10853031

[31] Radbruch et al, Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care, Palliative Medicine (2015), p. 11.

[32] Gillett, "Lecretia Seales and Aid in Dying in New Zealand.", p. 314.

[33] Quoted in Bingham, J. (2013). ‘We tinker with assisted suicide laws at our peril’. See http://www.telegraph.co.uk/news/uknews/law-and-order/10517189/We-tinker-with-assisted-suicide-laws-at-our-peril-warns-Baroness-Butler-Sloss.html. Accessed 14 July 2015.

[34] End-of-Life Decision-Making in Canada: The Report by the Royal Society of Canada Expert Panel on End-of-Life Decision-Making, Chapter 5; 7.b part (iv) at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265521/

[35] Personal correspondence with Robert Preston, Director of the UK think tank Living and Dying Well.

[36] Keown, J. "Mr Marty's muddle: a superficial and selective case for euthanasia in Europe". J Med Ethics 2006; 32:29-33

[37] P. Malpas, K. Mitchell, and MH. Johnson, "“I wouldn’t want to become a nuisance under any circumstances”—a qualitative study of the reasons some healthy older individuals support medical practices that hasten death," New Zealand Medical Journal 125, no. 1358 (2012), emphasis added.

[38] Amster Reedy - Māori  Tikanga Expert - Te Kawa of Marae (expert in ancient Māori  rituals), Pukenga (many skills) Tohunga (teacher of Māori  rituals) and Kaumatua (respected elder). At the forefront of Māori  philosophy and as an expert in ancient Māori  rituals, Amster provided advice to public and private sector agencies on tikanga, protocols and practices for over 20 years. Amster's iwi affiliations are with Aitanga-a-Mate; Putaanga; Tuwhakairiora; Uetohatu and Ngati Porou. (Personal communication with Dr John Kleinsman, Wednesday 16 November, 2011).

[39] P. Patelehio, "Euthanasia: A Pacific Island (Tokelauan/Samoan/Cook Island) perspective," The Nathaniel Report, no. 37 (2012), p. 8.

[40] See Hall, Karyl M., et al. "Follow-up study of individuals with high tetraplegia (C1-C4) 14 to 24 years postinjury." Archives of physical medicine and rehabilitation 80.11 (1999): 1507-1513

[41] Jones, D., and D. Paton. "How Does Legalization of Physician-Assisted Suicide Affect Rates of Suicide?". Southern Medical Journal 108, no. 10 (October 2015).

[42] Pitman, A., D. Osborn, K. Rantell, and M. King. "Bereavement by Suicide as a Risk Factor for Suicide Attempt: A Cross-Sectional National UK-Wide Study of 3432 Young Bereaved Adults " In, BMJ Open (2016). http://bmjopen.bmj.com/content/6/1/e009948.

[43] Chambaere, Kenneth, et al. "Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey." Canadian Medical Association Journal 182.9 (2010): 895-901. Of 208 deaths reported, 66 were without an explicit request. In 77.9% of these cases, the decision was not discussed with the patient.

[44] Onwuteaka-Philipsen, B.D. et al. “Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey.” The Lancet, 2012; 380: 908-15. In 2010, of 475 deaths as a result of euthanasia, 13 (2.7%) were without an explicit patient request.

[45] Van der Maas, Paul J., et al. "Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990–1995." New England Journal of Medicine 335.22 (1996): 1699-1705. In 1995, 0.7% of deaths involved ending the patient’s life without the patient’s explicit, concurrent request.

[46] Chambaere, ibid. p.896.

[47] Chambaere, Kenneth, et al. "Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey." Canadian Medical Association Journal 182.9 (2010): 895-901.

[48] Breitbart, William, et al. "Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer." Jama 284.22 (2000): 2907-2911.They conclude: “Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death,” p. 2907.

[49] Emanuel, Ezekiel J., et al. "Euthanasia and physician-assisted suicide: attitudes and experiences of oncology patients, oncologists, and the public." The Lancet 347.9018 (1996): 1805-1810: “Euthanasia and physician-assisted suicide are important issues in the care of terminally ill patients and while oncology patients experiencing pain are unlikely to desire these interventions patients with depression are more likely to request assistance in committing suicide. Patients who request such an intervention should be evaluated and, where appropriate, treated for depression before euthanasia can be discussed seriously.” P.1805.

[50] van der Lee, Marije L., et al. "Euthanasia and depression: a prospective cohort study among terminally ill cancer patients." Journal of Clinical Oncology 23.27 (2005): 6607-6612: “The risk to request euthanasia for patients with depressed mood was 4.1 times higher than that of patients without depressed mood at inclusion (95% CI, 2.0 to 8.5).”

[51] Wilson, Keith G., et al. "Attitudes of terminally ill patients toward euthanasia and physician-assisted suicide." Archives of Internal Medicine 160.16 (2000): 2454-2460. “For patients who would actually make requests for a physician-hastened death, however, psychological considerations may be at least as salient as physical symptoms.”P.2454.

[52] McCormack, Ruaidhrí, and Rémy Fléchais. "The role of psychiatrists and mental disorder in assisted dying practices around the world: a review of the legislation and official reports." Psychosomatics 53.4 (2012): 319-326:”…depression is more influential on the desire to hasten death than physical pain…A recent cross-sectional survey of 300 palliative patients estimated that major depressive disorder was present in 19% of cases. The true prevalence may be even higher.” P.324.

[53] Vachon, M. L. S. "In the terminally ill, a wish to die is a manifestation of depression and should be treated accordingly." Clinical Oncology 16.5 (2004): 319-320. P.319.

[54] Ibid.

[55] Groenewoud, Johanna H., et al. "Psychiatric consultation with regard to requests for euthanasia or physician-assisted suicide." General hospital psychiatry 26.4 (2004): 323-330.

[56] Washington State Department of Health 2014 Death with Dignity Act Report.  DOH 422-109 2014. http://www.doh.wa.gov/portals/1/Documents/Pubs/422-109-DeathWithDignityAct2014.pdf

[57] McCormack, Ruaidhrí, and Rémy Fléchais. "The role of psychiatrists and mental disorder in assisted dying practices around the world: a review of the legislation and official reports." Psychosomatics 53.4 (2012): 319-326.

[58] Commission Fédérale de Contrôle et D’évaluation de L’euthanasie. Sixieme Rapport Aux Chambres Législatives (Années 2012-2013). Available at: http://www.ieb-eib.org/fr/pdf/rapport-euthanasie-2012-2013.pdf

[59] See: https://www.government.nl/topics/euthanasia/contents/euthanasia-assisted-suicide-and-non-resuscitation-on-request

[60] “Regional euthanasia review committees Annual Report 2013”, p. 9. Available at:

https://www.euthanasiecommissie.nl/Images/Annual%20report%202013_tcm52-41743.pdf

[61] Thienpont, Lieve, et al. "Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study." BMJ open 5.7 (2015): e007454.

[62]Maddy French, The Guardian, Monday 26 May 2014. Available at: http://www.theguardian.com/society/2014/may/26/swiss-exit-assisted-suicide-elderly-not-terminally-ill

[63] SWI swissinfo.ch. Available at:  http://www.swissinfo.ch/eng/end-of-life-decisions_exit-members-vote-to-broaden-assisted-suicide-services/38653642

[64] Patients Rights Council, “Holland’s Euthanasia Law”. http://www.patientsrightscouncil.org/site/hollands-euthanasia-law/

[65] Patients Rights Council, “Belgium”. http://www.patientsrightscouncil.org/site/belgium/

[66] http://www.stuff.co.nz/taranaki-daily-news/news/9029192/Euthanasia-bill-close-to-MPs-heart

[67] “Regional euthanasia review committees Annual Report 2013”, p. 9.

https://www.euthanasiecommissie.nl/Images/Annual%20report%202013_tcm52-41743.pdf

[68] Commission Fédérale de Contrôle et D’évaluation de L’euthanasie: Sixieme Rapport Aux Chambres Législatives (Années 2012-2013) p. 8; and Troisième Rapport Aux Chambres Législatives (Années 2006-2007) p. 8.

[69] Smets, Tinne, et al. "Reporting of euthanasia in medical practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases." BMJ341 (2010): c5174.

[70] Van der Heide, Agnes, et al. "End-of-life practices in the Netherlands under the Euthanasia Act." New England Journal of Medicine 356.19 (2007): 1957-1965.

[71] Smets, op cit. p. 4. 

[72] European Institute of Bioethics. Does the Belgian Model of Integrated Palliative Care Distort Palliative Care Practice? P. 3. Available at: http://www.ieb-eib.org/en/pdf/20151126-euthanasie-et-soins-palliatifs-english.pdf

[73] Ganzini, Linda, Elizabeth R. Goy, and Steven K. Dobscha. "Prevalence of depression and anxiety in patients requesting physicians’ aid in dying: cross sectional survey." BMJ 337 (2008). P. 3.

[74] Data retrieved from Annual Death with Dignity Reports, Year 1 – Year 17. https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ar-index.aspx

[75] Oregon Public Health Division: Oregon’s Death with Dignity Act – 2014. https://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf

[76] Ibid. P. 6.

[77] See http://dredf.org/public-policy/assisted-suicide/some-oregon-assisted-suicide-abuses-and-complications/

[78] Ibid.