November 21, 2020

Exit Submission to the Queensland Law Reform Commission

22 November 2020

Mr David Groth,
Commission Director
Queensland Law Reform Commission
Box 13312
George Street Post Shop QLD 4003
Australia

Dear Mr Groth,
Please find attached the submission of Exit International to the QLRC Consultation Paper WP 79, A legal framework for voluntary assisted dying.
Should you or the Committee have questions, I may be contacted at the below.
Yours sincerely,

Philip Nitschke, PhD MBBS

Preamble

Of the 50 questions and proposals on which views are sought, I have elected to focus on the following:

·      Chapter 3: Principles, Qu. 1

·      Chapter 4: Eligibility Criteria for Access, Qu. 5, Qu. 6

·      Chapter 10: Other Matters, Qu. 49, Qu. 50

We have selected these points because we believe it is in this regard that our input may be most useful to the Commission, given the organisation’s long-standing, international knowledge of, and advocacy in, the voluntary euthanasia, assisted suicide, voluntary assisted dying etc. movement. For the past five years, I have been based in Amsterdam (the home of the modern voluntary euthanasia movement). This has enriched and internationalised the organisation’s perspective; a standpoint which I hope will prove to be of interest to the Commission in their deliberations.

About Exit International

Founded in 1997, Exit International is Australia’s leading end of life choices information, education and advocacy organisation. Further information about Exit is at www.exitinternational.net

CHAPTER 3: PRINCIPLES

1.     What principles should guide the Commission’s approach to developing voluntary assisted dying legislation?

Introduction

In the global assisted dying / assisted suicide/ voluntary euthanasia movement, there are two principal paradigms of thought and practice.

The Medical Model

Firstly there is the medical model, where the process of dying is situated within the medical discourse. This approach medicalises the dying experience, rather than conceptualising death as a social, cultural or biological experience and inevitability.

The medical discourse situates dying as a process that requires oversight by the medical profession and which prioritises medical knowledge over that of the ‘patient’.

The medical discourse takes a person’s illness as a starting point, rationalising that the only reason a person may wish to end their life prematurely is because of a recent diagnosis of a life threatening illness for which there is no cure.

Within this medical model, there is no conception (and no space to understand or appreciate) that a rational adult may desire to end their life prematurely for reasons which have little or nothing to do with their state of health.[1] What makes a life worth living, especially in one’s later years, is complex and does not deserve to be reduced automatically to a medical problem.

The experience of Exit International over the past 23 years of operation shows that older people’s desire for control over their life and death should never be conflated with a terminal diagnosis. While a terminal and/ or serious illness will almost always be a wake-up call prompting consideration and thought about how one may die, bringing one’s life to a dignified, peaceful and elective close is not always dependent upon one’s state of health. Rather, there are much more fundamental philosophical (and deeply existential) issues at stake in regard to what makes a life worth living. [2]

To accept, uncritically, the medical discourse as the most appropriate framework for understanding the assisted dying debate is to create a pathway to an outcome which will be discriminatory and exclusionary (eg. against those who fail to fit the criteria for access, despite desiring a good death). A law based on the medical discourse cannot but fail to address, not only the existential needs of an ageing population, but the ethical and moral requirement of a law which should provide for the welfare and ontological wellbeing of the majority.

As public health consultant Dr Lucy Thomas has argued in the British Medical Journal in October 2020: by medicalising ‘what constitutes an acceptable reason for ending life, and with doctors as the arbiters and administrators, … extends medical authority rather than enhancing patient autonomy, with deeply damaging unintended consequences. [It is only by moving outside the medical frame’ that ‘the fundamental ethical and practical dilemmas’ can be brought ‘into focus, facilitating serious discussion about how society should respond to people with mental capacity and a consistent desire to end their life prematurely’.[3]

It is Exit’s contention that excluding older people from access to a voluntary assisted dying law creates a climate of fear and desperation: of being trapped in a situation of increasing frailty with no escape and with little control, autonomy and dignity. It is a powerful example of Thomas’ ‘damaging unintended consequence’.

The Human Rights Paradigm

In juxtaposition to the medical discourse framing the global assisted dying debate is, the human rights model of end of life choice, as adopted in Switzerland. Under the Swiss Penal Code (see Art. 115 StGB), any person can be assisted to die, as long as the motive of those providing the assistance is altruistic in kind.

In Switzerland, there is no requirement that the person receiving the suicide assistance has been diagnosed with an illness of any kind. This allows for the practice of what is known as ‘Balance Sheet Suicide’ (BSS), whereby a person’s quality of life is understood more holistically, and with a nuance and sensitivity that is precluded by eligibility that is based on a standard medical terminal diagnosis. For example, under the human rights model, it is myriad quality of life indicators that are considered in the context of a person’s request for assistance to die.

For 104-year old Australian ecologist, Professor David Goodall, who had an assisted suicide death in Switzerland in May 2018, it was factors such as failing eyesight (which prevented him from undertaking his much loved and valued fieldwork in the Australian bush) which were considered critical in his rational decision to end his life prematurely. Failing eyesight, increasing frailty in terms of his mobility and a feeling that he was disengaging from the world as he once knew it, excluded him from ever qualifying for assistance to die in his home state of West Australia (see: https://bit.ly/goodallAP).

More recently, the experience of 91-year old Ballina woman, Laura Henkel[4], shows that the reasoning behind a person’s desire for a peaceful, premature, elective death need not be predicated upon a terminal diagnosis and all that entails (eg. expected death within 6 or 12 months or more etc.). Inspired by David Goodall, Laura explained that she felt that at 91, the time had come to die. Laura’s principal reason for travelling to Switzerland in December 2019 for an assisted suicide was that she had had enough of life. She also had a life-long fear of having to go into a nursing home (see: https://vimeo.com/373563552). As she was not terminally ill, Laura, like David, would always be ineligible for an Australian assisted dying law.

The experience of older Australians such as David Goodall and Laura Henkel is not the exception. It is only exceptional because they are among the few who have chosen to speak out. There is a silent majority for whom their experience resonates strongly.

The Swiss Human Rights Approach in Law

The Swiss approach to assisted suicide also concerns a number of important case law decisions (see Swiss Federal Court BGE 133 I 58). These sit alongside the Swiss Penal Code.

The two further qualifying principles for assisted suicide in Switzerland are:

1.     The person receiving the assistance must have mental capacity

2.     The action which brings about the death must be initiated (controlled) by the person themselves.

In regard to the first point of mental capacity, just as under Australian law, mental capacity is assumed. Only if the person has been diagnosed with a psychiatric or neurological condition, must the person undertake a consultation with a psychiatrist. The hitherto central, authoritarian role of the medical profession is all but displaced from the system. The role of the doctor can be considered to be one ‘in reserve’: drawn upon only when needed in order to establish mental capacity.

In regard to the second point of ownership of the action (Tatherrschaft), again there is no central role of the doctor in administering the drugs used. The person must take the cup to the lip themselves, or activate the IV infusion themselves. There is no space for third party force or coercion. Of course, the prescription of the lethal drug Nembutal remains the task of a medical professional although there is no requirement under any Swiss law or regulation that prescription substances must be used. This lack of proscription of the method of death is further evidence of how the Swiss approach sits outside the medical framework.

That the Swiss approach has worked effectively since 1937 makes this model an important subject of critical inquiry in the context of devising effective voluntary assisted dying legislation for Queensland.

CHAPTER 4: ELIGIBILITY CRITERIA FOR ACCESS TO VOLUNTARY ASSISTED DYING

5. Should the eligibility criteria for a person to access voluntary assisted dying require that the person must be diagnosed with a disease, illness or medical condition that:

a)     is incurable, advanced, progressive and will cause death (as in Victoria); or

b)    is advanced, progressive and will cause death (as in Western Australia)?

Exit International submits that voluntary assisted dying legislation should not be restricted to people with a serious or terminal physical illness diagnosis.  Neither the WA nor the Victorian eligibility criteria should be adopted in Queensland.

Exit submits that the Swiss model should be adopted and this should be based on mental capacity (and age). If the criteria of age is to be incorporated, Exit submits that the 8 March 2020 bill that is currently before the Dutch Parliament (known as ‘Completed Life’) should be taken as an example of the type of age restriction that could be applied. The Dutch bill states that all citizens 70 years and over who feel ‘tired of life’ should have ‘the right to professional help in ending their life’.[5]

Of course, there is room for argument over whether this age cutoff should be lower or higher than 70 years. The important fact is that the permanence of death needs to be understood and appreciated.

6. Should the eligibility criteria for a person to access voluntary assisted dying expressly state that a person is not eligible only because they:

a)     have a disability; or

b)    are diagnosed with a mental illness?

Exit submits that people with disability or mental illness should not be automatically excluded from voluntary assisted dying legislation in Queensland.

As explained in the above section on ‘Principles’, a person’s rationale for requesting a voluntary death will be based on a complex, qualitative assessment of what makes a life worth living. Exit’s anecdotal evidence of the past 23 years of working with people who are stakeholders in this field (a significant minority of whom have had a physical disability – eg. after a catastrophic spinal injury) suggests that this sub-section of the community should have a voice and should have their needs considered.

In regard to mental illness, Exit submits that the legislation should have regard to the recent clarification by the Netherlands’ five regional euthanasia review committees who, on 21 November 2020, stated publicly that they would be making it easier for doctors to grant euthanasia requests to demented patients.[6] Mental illness such a dementia should not, therefore, be a factor of automatic exclusion from eligibility to request assistance to die. Similarly the Dutch have never excluded mental illness from eligibility under their Termination of Life on Request and Assisted Suicide Act. The Swiss ensure that a person with mental illness retains mental capacity (undergoing a psychiatric assessment) before receiving assistance to die.

CHAPTER 10: OTHER MATTERS

49. How should the death of a person who has accessed voluntary assisted dying be treated for the purposes of the Births, Deaths and Marriages Registration Act 2003 and the Coroners Act 2003?

In Switzerland, the death certificate of a person who is assisted to die states merely the date, time and location of the death. The cause of death is not declared. This avoids any potential embarrassment within the family of the person concerned.

50. What key issues or considerations should be taken into account in the implementation of voluntary assisted dying legislation in Queensland?

Exit has noted that of the 50 questions and proposals for which public views are sought, there is no mention of the actual means that will be used to bring about a peaceful death. Exit considers this a further, important topic for comment.

Sodium pentobarbital (Nembutal) has long been considered the drug of choice for voluntary euthanasia. After extensive research in 1995, it was the drug that was chosen to be used in the Northern Territory during the nine months of the Rights of the Terminally Ill Act (NT). Of its many pluses (eg. it induces deep sleep before causing death so the person ‘dies in their sleep), Nembutal has the advantage of being able to be administered intravenously, or as a drink.

When taken as a drink, an antiemetic (usually metoclopramide) is considered essential. The antiemetic can be taken as a ‘stat-dose’ some 40 minutes prior to ingestion of the Nembutal.  A small amount of alcohol can be taken after the pentobarbital. The alcohol (eg. Scotch or Bailey’s) is useful in removing the bitter drug aftertaste. Loss of consciousness usually occurs within a few minutes and death follows soon afterwards.

If intravenous administration is required, Exit submits that the Swiss model be followed in that the person should activate the mechanism themselves (in order to prevent accusations of third party interference or coercion). If Nembutal is administered intravenously, loss of consciousness will be almost immediate.

Note – for some years now, there has been difficulty in sourcing Nembutal for the purpose of assisting a suicide in some legislatures (particularly the US). This is for two related reasons. Firstly, Nembutal is the drug of choice in US states that perform capital punishment. This has led some drug companies to refuse to supply it, for ideological reasons. Limited supply has in turn driven the price up from around US$500 in 2012 to up to $25,000 per dose by 2018.

Should the need for an alternative arise to Nembutal arise, the mixture referred to as ‘D-DMAPh’ is worthy of consideration.  has been the development of a very effective oral substitute for pentobarbital. D- DMAPh consists of Digoxin, Diazepam, Morphine, Amitriptyline and Phenobarbital, and is as effective as pentobarbital. All of these drugs are readily available.[7]

In Conclusion

The State of Queensland has a unique opportunity to forge a new, more equitable and more sustainable path into the future of assisted dying in Australia.

By thinking more critically, beyond the medical model, the Queensland Government is well placed to make laws that benefit the majority, rather than the select few who are sick enough to qualify for a law which by its very nature is exclusionary, rather than inclusionary.

In departing from the hitherto uncritical privileging of medical authority over death and dying, older and seriously ill Queenslanders will avoid being paternalised in this most private and important of decisions. As Dutch writer and Parkinson’s sufferer Henk Blenken has argued about the Netherlands’ law:

‘It is a sad story. The right to die has been discussed for so long now in the Netherlands that we have come to believe we each have the right to die when we want. But when push comes to shove, the patient is not the one who decides on their euthanasia. It is the doctor who decides, and no one else’.[8]

An approach based on the Swiss model would serve the state of Queensland much better in the longer term. It is inevitable that Australia will play ‘catch-up’ to the current Dutch situation (given that country’s two decades and more experience of euthanasia legislation) where the ‘completed life’ debate is centre-stage: that is where law makers recognise that older adults’ decision-making around voluntary death are dependent on a myriad factors that extend far beyond a terminal diagnosis.

I cannot stress enough the importance of a wholistic approach to and end of life choices law in Queensland, especially given the changed lifecourse in modern, western societies such as Australia (where we are all living longer but ‘sicker’ lives). Without choice over when and how their lives can come to a dignified end, older Australians (not only the terminally ill) remain hamstrung. They deserve better. Queensland has a golden opportunity to do better.

References

[1] Timonthy Schmutte et al. ‘Self-Harm, Suicidal Ideation, and Attempted Suicide in Older Adults: A National Study of Emergency Department Visits and Follow-Up Care’, The American Journal of Geriatric Psychiatry, Vol 28, 6 June 2020 at: https://doi.org/10.1016/j.jagp.2019.12.003
[2] Karen M. van Leeuwen et al.  ‘What does quality of life mean to older adults? A thematic synthesis’, Plos One, March 8, 2019 at: https://doi.org/10.1371/journal.pone.0213263
[3] Lucy Thomas ‘Demedicalisation: radically reframing the assisted dying debate’, British Medical Journal, 30 Sept 2020 at:  https://doi.org/10.1136/bmj.m2919
[4] Laura Henkel is the subject of a new Australian feature documentary film, premiering at the Perth International Film Festival, 12 December 2020. See: https://revelationfilmfest.org/film-information-new.php?filmId=1098
[5] See: https://www.houseofrepresentatives.nl/news/plenary-session-about-citizens-initiative-%E2%80%98completed-life%E2%80%99
[6] See: https://nltimes.nl/2020/11/21/nl-expanding-rules-euthanasia-dementia-patients
[7] Dr Lonny Shavelson of the Bay Area End of Life Options group is an expert in this field. See: https://bayareaendoflifeoptions.com/2016/04/06/bay-area-end-of-life-options/
[8] Henk Blenken ‘My death is not my own: the limits of legal euthanasia’. The Guardian Long Read, 10 August 2018 at: https://www.theguardian.com/news/2018/aug/10/my-death-is-not-my-own-the-limits-of-legal-euthanasia