The Nathaniel Centre
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Submission to the Justice Select Committee: End of Life Choice Bill

Staff of The Nathaniel Centre

 

Our Position

We oppose the End of Life Choice Bill for a range of reasons laid out in this submission, primarily because: (i) it does not and cannot provide adequate safeguards against coercion; (ii) in giving the choice of euthanasia or assisted suicide to a few, we believe it will severely constrain the choice and/or ability for many others to continue to live; (iii) the practices of euthanasia and assisted suicide contradict medical ethics and are the antithesis of ethical healthcare.

Background Comments

  1. While religious arguments have their own validity within a faith-based framework, we recognise (i) they will not be compelling for persons who do not share that 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 pragmatic nature that can be appealed to by all persons irrespective of their religious background.

  2. The motivation that underpins our opposition to the legalisation of the End of Life Choice Bill is ‘compassion’ – compassion for the many who will be negatively affected by the passage of this Bill, including those who are most vulnerable to the suggestion that they will be ‘better off dead’ because they will come to perceive themselves, or be perceived by others, as being a burden – whether financial, physical, social or emotional. As has happened overseas, changing the law will contribute to a new ‘norm’ for those who are at the end of life, one which will require them to justify why they would not avail themselves of an early death. For example, “In Belgium, a tendency of family members to consider the dying process as undignified, useless and meaningless, even if it happens peacefully, comfortably and with professional support, has been described.”1

Terminology

  1. The End of Life Choice Bill, in its current form, speaks of “assisted dying”, a term that we regard as imprecise. It fails to differentiate acts of ‘assisted suicide’ from acts of ‘euthanasia’, a difference that has significant legal, political, ethical, practical and social implications. In addition, the term “assisted dying” fails to adequately distinguish between ethically acceptable acts such as withdrawing or withholding treatment (when it is no longer medically indicated) and the intentional ending of a person’s life.

  2. We note that the End of Life Choice Billavoids the use of the term suicide, no doubt because of a view held by some that the premature death of those with a terminal illness can be neatly distinguished from other more ‘tragic’ forms of (non-assisted) suicide. Against this view, we wish to remind you that the Health Select Committee Report clearly debunked this understanding:

Most advocates of assisted dying argued that suicide and assisted dying should not be conflated. They often made a distinction between some forms of suicide and others, suggesting that they can be categorised as either ‘rational’ or ‘irrational’. This distinction was not supported by any submitters working in the field of suicide prevention or grief counselling. On the contrary, we heard from youth counsellors and suicide prevention organisations that suicide is always undertaken in response to some form of suffering, whether that is physical, emotional, or mental.2

  1. The Justice Select 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 intentionally ending life as a way of dealing with personal suffering then we should not be afraid to call it what it is.

  1. We invite the Justice Select Committee to consider a fundamental question: Is it 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? We, along with many others, do not believe that this is practically possible.

  1. For reasons of linguistic as well as ethical and legal precision, we use the terms ‘assisted suicide’ and ‘euthanasia’ (or EAS to refer to both practices) throughout this submission.

Our Approach to the Issue of Euthanasia and Assisted-Suicide (EAS)

  1. 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 can achieve this, so long as it is able to be sourced equitably by all New Zealanders.

  2. 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.”

  3. We acknowledge the stories of ‘terrible deaths’ sometimes cited by proponents of EAS. We are also aware of the advances made in palliative care over more recent times, as well as the fact that not everyone may have had access to the best palliative care. When assessing such stories, an important question is how such deaths would be handled in the light of modern-day palliative care.

The Impact of Context on Choice and Autonomy

  1. In the debate about euthanasia and assisted suicide, much is made, rightly, of ‘individual autonomy’ and the ‘right to choose’. However, what is not often discussed in these debates is the fact that ‘autonomy’ and ‘choice’ are both dependent on and shaped by the social, political and economic context in which we live.

  2. The rise in abuse of our elders3, as well as documented evidence of greater social isolation and loneliness amongst people over 65 years4, highlights a significant cultural shift in our society in recent times – the devaluing of age. Those working in the aged care sector note that many disabled and elderly people express the view that they have become, or the fear that they will become, an unwelcome burden on family and society. Legalising euthanasia or assisted suicide will only exacerbate this situation. It is not an overstatement to describe this as a form of institutionalised abuse of our elders.

  3. Advocates of EAS often refer to the predominance of ‘white, well-educated, well-insured’ recipients of assisted suicide in Oregon as evidence that the ‘vulnerable’ are not at risk from legalised assisted suicide and/or euthanasia. However, the notion of ‘vulnerable’ being appealed to in these instances is limited. For the sick and disabled, the realities of power inequity – between and within families, between patients and medical professionals, between recipients of care and caregivers – come into play for people who, in other contexts and conditions, would not ordinarily be classified as vulnerable.

  4. Laws do not provide effective protection for vulnerable groups; rather, they work by providing recourse to justice after the event. We have good laws to prevent the exploitation or abuse of workers, of children, of women, of tenants, of elders, yet we know there are many instances where these laws fail to prevent such exploitation. EAS legislation will be no more be able to ensure that only those who really ‘choose’ will qualify for assisted suicide than the many other instances of legislation that have failed to protect against abuse. The key difference between an EAS regime and other laws is that there is no satisfactory recourse to justice after a person has died.

  5. While we live in a society that highly values choice, there are numerous examples of limiting choice for the sake of the common good, and more specifically in the interests of protecting the most vulnerable. Maintaining the absolute prohibition of euthanasia and/or assisted suicide is demanded at this time because it is not possible to adequately protect the lives of those who are most vulnerable in the current ageist and ableist societal context. The so-called safeguards in the End of Life Choice Bill do not and cannot protect against the risks of coercion that we have described.

Need for equitable access to Palliative Care

  1. The multi-disciplinary teams providing palliative care report that, when properly funded palliative care is available, palliative care teams are well able to provide peaceful and dignified deaths in even the most difficult cases.

  2. We readily acknowledge that not all people in New Zealand currently experience a good death. The ethical and caring response to this situation is to prioritise the availability of quality palliative care for all New Zealanders. In 2013 the Palliative Care Council of New Zealand noted that the main failing in palliative care is the lack of access and insufficient funding, as well as poor understanding as to what palliative services can do.5

  3. Because the End of Life Choice Bill does not legally mandate palliative care, it does not guarantee real choice and, in the absence of other choices, will operate as a ‘Hobson’s choice’. This constitutes an unacceptable risk, in particular the risk that people will choose EAS out of desperation.

  4. To conclude, the law being proposed will be too dangerous in the current environment for all those who are vulnerable to the suggestion that they will be ‘better off dead’ than being a burden, or those who find themselves unable to access quality end-of-life care.

Involvement of the medical profession

  1. We note that EAS contravenes 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.

  2. The legal, cultural, social and ethical questions surrounding the practice of EAS need to be considered separately from the question about who the ‘agents’ of such deaths might be. It is incorrect and unwise to assume that EAS belongs within medicine.

  3. As well as being incompatible with the profession of medicine, the active involvement of the medical profession in EAS is unnecessary. Were the New Zealand Parliament ever to legalise EAS, it could be implemented without health professionals being directly involved. A precedent for this already exists in Switzerland.6

  4. Jones et al.,7 note that requests for euthanasia in Belgium are more often for non-terminal conditions, that requests often occur in the very early stages of a patient’s disease and that requests often relate to existential or mental reasons that lie outside of the proper role and competence of the doctor.

  5. The proposed End of Life Choice Bill places a doctor in the position of being both life takers as well as life savers. If a doctor is willing to use the assisted suicide or euthanasia option, he/she cannot be devoted fully to the patient’s life interests, interests which, for many patients, will almost certainly go beyond what they may think they want at a particular point in time.

Overseas Jurisdictions

  1. The numbers of deaths from EAS continue to increase in both the Netherlands and Belgium, illustrating the fact that, once legalised, EAS takes on its own momentum. There are well-documented shortcomings with the practice of EAS in both Belgium and the Netherlands. Euthanasia is carried out without explicit consent8 and 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.9,10

  2. In the Netherlands it is estimated that only 4 percent of all requests for physician-assisted death are referred for psychiatric consultations.11 In Washington State in 2016, 5 percent of participants of the Death with Dignity Act were referred for psychiatric/psychological evaluation.12 In Belgium, 9.5 percent (307/3239) of patients whose death was not imminent, were referred to a psychiatric consultant for the years 2012/13.13

  3. There has been a widening of the categories that ‘qualify’ for euthanasia/assisted suicide to include children and patients with dementia and mental illness in both the Netherlands and Belgium. In addition, there are increasing numbers of cases of euthanasia approved where there has been a diagnosis of psychiatric disorder or dementia. 14,15

  4. There is clearly a degree of normalisation of assisted suicide in Oregon, evidenced by the continuing increase in numbers and the failure to refer for psychological examination. The proportion of people referred for psychiatric assessment in Oregon averaged 22 percent over the first five years after legalisation, compared with the average of 3.4 percent the most recent five years.16

  5. 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.” Over the period since the DWDA legislation was introduced, 1998-2016, the range between first request and death was 14-1,009 days, that is, from two weeks to 2 years and 9 months.

  6. 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. 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.

  1. Oregon is often cited as an example where there has been no expansion of criteria; however, there is evidence that EAS advocacy organisations intentionally stifle attempts to expand the scope for the reason that it “would send the wrong message to law makers considering similar laws in other states”.17

Polls

  1. The polling data used to support the legalisation of EAS does not reflect the complexity of the issue and nor does it capture people’s informed views. When respondents are given information about the more complex issues concerning EAS, many poll respondents change their minds.

EAS and Disability

  1. “Terminal illness can bring with it disabilities which characterise the situation of disabled people who are happy and contributing members of society - such as incontinence or requiring assistance in dressing, bathing, eating, toileting or in other activities of daily living”18.

  2. Advocates of euthanasia often claim that they do not want to endure the ‘loss of dignity’ that they associate with needing assistance for bathing and toileting at the end stages of illness. They suggest that they would ‘prefer to be dead’.

  3. There is no ‘hard line’ that can be drawn between persons with a grievous and irremediable medical condition who experience unbearable suffering, and disabled people. Legalising EAS will send a strong social message to all disabled people, including those whose disabilities are primarily a function of the debilities associated with age: ‘Better dead than disabled.’

Conclusion

  1. Euthanasia and assisted suicide are not part of healthcare and contravene medical ethics.

  2. 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.

  3. The promotion of ‘autonomy’ or ‘choice’ for a few is an emaciated foundation on which to introduce a practice that will threaten the choices of many others.

  4. There is no ‘hard line’ that can be drawn between persons with a grievous and irremediable medical condition who experience unbearable suffering, and disabled people. Legalising EAS will send a strong social message to all disabled people, including those whose disabilities are age related: ‘Better dead than disabled.’

  5. In bioethics there is a well-known principle, the Precautionary Principle, which 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.

  6. ‘There is no convincing case to be made for a safe EAS regime in New Zealand at this point in time.’ In the current context and given the legally available and ethical alternatives to EAS that already exist, a commitment to those who are most vulnerable because of old age and/or disability demands that New Zealand follow the many other jurisdictions who, in recent years, have reached the conclusion that euthanasia and assisted suicide are quite simply too dangerous to introduce.

For reasons of space, the references have not been included. The full submission, with references, can be found on the website of The Nathaniel Centre, www.nathaniel.org.nz