WHAT IS VOLUNTARY ASSISTED DYING?
Voluntary assisted dying (VAD) is a quick and peaceful death which results from a patient taking, or administering to themselves, a fatal dose of a medication. It involves a medical practitioner making the lethal substance available to an eligible patient (after having gone through a highly-safeguarded, assessment process), which the patient then uses to end their life at a time and place of their choosing. The patient is in control at all stages of the process.
WHAT IS THE DIFFERENCE BETWEEN VOLUNTARY ASSISTED DYING AND VOLUNTARY EUTHANASIA?
Voluntary Assisted Dying (VAD) and Voluntary Euthanasia (VE) are often used in common language to mean the same thing. However, they are actually defined differently. The difference is that in the case of VAD, the lethal medication is self-administered, whilst in the case of VE, the lethal medication is administered by someone else, usually a doctor giving a lethal injection.
Currently, both voluntary euthanasia and voluntary assisted dying are illegal in Australia.
NB: Both the NSW and the Victorian Voluntary Assisted Dying Bills were based on the conservative and narrow Oregon model, not voluntary euthanasia per the broader European models. Both the NSW Bill and the Victorian Voluntary Assisted Dying Law allow for assistance to die by self-administration only (i.e. voluntary assisted dying), with the only exception being administration of the lethal drug by the doctor (i.e. voluntary euthanasia) where the terminally-ill person is physically unable to self-administer the lethal drug.
WHY IS THE TERM ‘ASSISTED SUICIDE’ NOT APPROPRIATE?
Dying people who want to control the manner and timing of their death are not suicidal. Oregon’s Death with Dignity Act itself states that a death under its provision is not a suicide — there being major differences between a rational and fully informed choice in the face of intolerable and unrelievable end-of-life symptoms, and irrational choices about transient problems. 1.
HOW MANY AUSTRALIANS SUPPORT ASSISTED DYING?
The most recent Roy Morgan Poll 2. undertaken in November 2017 showed that:
85% OF AUSTRALIANS SUPPORT THE CHOICE OF VOLUNTARY ASSISTED DYING FOR TERMINALLY ILL PEOPLE.
SUPPORT FROM CHRISTIANS
IS VOLUNTARY ASSISTED DYING SUPPORTED BY PRACTISING CHRISTIANS?
Many Christians believe that voluntary assisted dying, is consistent with Christian values and with Jesus’ message of love and compassion, especially for those who are suffering. Today the overwhelming majority of Australian Christians support choice for voluntary assisted dying. A number of studies have confirmed that whilst support for voluntary assisted dying is strongest amongst those who say they have no religion, the vast majority of religious Australians are also supporters.
For example, the 2016 Australian Election Study (AES), conducted by scholars at Australian National University, which found support for the statement that, “Terminally ill people should be able to legally end their own lives with medical assistance” by 74.3% of Catholics and 79.4% of Anglicans, 77.8% of Uniting Church and 90.6% for those with no religion. 3.
It is evident that the Catholic Church and members of the clergy who publicly oppose voluntary assisted dying are not representing the view of their ‘flock’.
The Australian organisation, Christians Supporting Choice for Voluntary Euthanasia, has an excellent website which sets out the arguments and closely examines Christian doctrine in relation to the question of voluntary assisted dying.
SUPPORT FROM NURSES
HOW MANY NURSES SUPPORT VOLUNTARY ASSISTED DYING?
A key voice in the campaign for assisted dying is the nursing profession, with the Australian Nursing and Midwifery Federation leading the lobbying effort.
“This is a very important issue for the nursing profession. Given our compassion for those who suffer and our concern for quality of life being afforded to every individual, this is an issue worth fighting for to ensure the right balance is achieved and all sides of the debate are well considered." 4.
NSWANMF President, Coral Levett
SUPPORT FROM DOCTORS
ARE THERE DOCTORS WHO SUPPORT VOLUNTARY ASSISTED DYING?
Although the current federal president of the Australian Medical Association, Dr Michael Gannon, is personally and publicly opposed to assisted dying law reform, the membership of the Australian Medical Association is split. 5.
Professor Brian Owler, neurosurgeon and the immediate past federal president of the Australian Medical Association, gave an address to the National Press Club on 12 October 2017, speaking in support of voluntary assisted dying.
Amongst other things, Professor Owler said:
“Voluntary assisted dying is not about a choice between life and death. No. Rather, it is about respect for a dying person’s choice, about the timing and manner of their death.”
“The need for this legislation is plainly evident. Many of those most determined to see this law pass have personal anecdotes of loved ones whose death has been terrible. Not only was the person’s suffering prolonged and unbearable but it left deep lingering wounds in the hearts of their family and friends. The impact and depth of those wounds should never be discounted.”
In closing, Professor Owler spoke directly to members of the Victorian Parliament, as they prepare to vote on their own assisted dying legislation, however, he could just as easily be addressing members of the NSW Parliament. He said:
“I know that all of you went into Parliament to make a difference. As a doctor, I understand this desire. It’s what motivates doctors as well. For some of you, this may be one of the hardest decisions you make in your political career. But to be able to make a decision, the result of which is to ease the suffering of a person who is dying, and those who love that person, to provide them with the comfort of a choice, not just for one day but for days into the future, that is a unique opportunity for our parliamentarians to exercise. This is an opportunity not to be wasted.” 6.
There are many other doctors who are speaking up in support of voluntary assisted dying and many are members a national organisation called Doctors for Assisted Dying Choice.
The latest high profile doctor to support voluntary assisted dying laws is Professor Charlie Teo. In a recent Facebook post for Dying with Dignity, Prof Charlie Teo said:
“I am proud of my reputation of never giving up on patients who still have the will to live despite what others believe to be an exercise in futility. I am equally as proud to support Dying with Dignity because the only situation that would be worse than not having control of your life is to not have control over your own death.” 7.
THE LAWS OVERSEAS
WHICH OTHER COUNTRIES HAVE LEGALISED VOLUNTARY ASSISTED DYING OR VOLUNTARY EUTHANASIA?
There are currently 16 international jurisdictions that provide access to either voluntary assisted dying or voluntary euthanasia, for those people who meet strict eligibility criteria within robust legal frameworks.
HOW DO THE LAWS DIFFER AROUND THE WORLD?
There are differences between the various laws in regard to the eligibility criteria, the method of administration of the lethal medication and the legal framework, or process.
The American laws (on which the Australian laws are based) are considered the most restrictive, because the individual has to be suffering from a terminal illness, with less than 6 months to live, whereas the European laws do not restrict access based on a terminal illness. In Europe, the eligibility and safeguards are based on a model requiring ‘due care’ on the part of the doctor assisting a patient to die and the patient must be experiencing ‘unbearable and irremediable suffering’ to qualify.
The American laws require self-administration only, whereas under the European and Canadian models, both voluntary assisted dying and voluntary euthanasia are permitted.
Space on this website does not allow for a detailed comparison of the legal frameworks, safeguards and procedures involved in the various assisted dying models around the world. However, according to the Victorian Committee, which travelled to many of these jurisdictions, although the models differ, ‘what they all have in common is robust regulatory frameworks that focus on transparency, patient-centred care and choice.’ The Committee found no evidence of institutional corrosion or the often cited ‘slippery slope’. 8.
HAVE THE ASSISTED DYING LAWS OVERSEAS BEEN BROADENED OVER TIME?
As explained above, the eligibility criteria in the European and American laws has always been different. Out of the 14 jurisdictions that have legalised either voluntary assisted dying or voluntary euthanasia, only one jurisdiction has made an amendment to their law, all the others have remained unchanged. The only jurisdiction to have amended its law is Belgium, when in 2014, twelve years after legalising voluntary euthanasia, it amended the rules to permit doctor-assisted death for minors in a hopeless medical situation and with their explicit consent. 9.
NB. The Australian laws are based on the Oregon law that has remained unchanged for 20 years and only applies to competent, terminally ill adults.
CAN PEOPLE WITH MENTAL ILLNESS OR A DISABILITY QUALIFY UNDER THE OVERSEAS LAWS?
Under the American laws, (on which Australian Bills are based), eligibility criteria are based on the diagnosis of a terminal illness, not on a disability, so having a disability alone does not meet the eligibility criteria. However, if someone with a disability, meets the eligibility criteria because for instance of a cancer, they would not be denied access to voluntary assisted dying so long as they satisfy all of the eligibility criteria on the basis of their cancer. The same applies to mental illness. Although a person with mental illness alone would not meet the eligibility criteria for voluntary assisted dying, they would not be discriminated against because they had a mental illness but otherwise met all of the eligibility criteria unless the mental illness impairs decision-making capacity in relation to voluntary assisted dying.
As explained earlier, the eligibility criteria in the European model allows someone with ‘unbearable and irremediable suffering’ to request an assisted death. This means it is possible for someone with a mental illness, or a severe disability, to qualify if they have decision-making capacity and all the safeguards are met, including that the physician is satisfied that the patient’s suffering is unbearable, with no prospect of improvement.
Although it is possible under their law, the numbers of people qualifying with a mental illness, or disability, are quite small. The vast majority of people accessing assisted dying in Europe are the same as those in America and Canada, that is, people dying of terminal, physical illnesses such as cancer, or MND.
CAN CHILDREN REQUEST ASSISTED DYING IN JURISDICTIONS WHERE IT IS LEGAL?
Under the American and Canadian laws, only competent adults aged 18 years or over can qualify, if they meet all other eligibility criteria. In Europe, the laws do allow access for some minors, however, the safeguards are stricter and only a very small number of children have accessed their assisted dying laws. In the Netherlands between 2002 and 2015 only 7 children have had an assisted death. In Belgium, it was two years after the law was amended in 2014, before the first minor accessed an assisted death. He was 17-year-old and he died in mid 2016. 9. In Belgium, for a minor to undergo voluntary euthanasia, they must be in a ‘terminal medical situation with constant and unbearable physical pain which cannot be assuaged and that will cause death in the short term.' 9.
CAN PALLIATIVE CARE RELIEVE THE PAIN AND SUFFERING OF DYING AUSTRALIANS?
Australia has one of the best palliative care systems in the world and it has improved significantly over the past 20 years. For the majority of dying Australians, palliative care can relieve the complex mixture of physical, emotional and psychological symptoms, however, it cannot relieve all pain and suffering.
WHAT PERCENTAGE OF DYING PATIENTS CAN’T HAVE THEIR SUFFERING ALLEVIATED?
Based on data collected by approximately 100 palliative care services across Australia every year, we know that a small yet significant percentage of dying patients cannot have their symptoms controlled, even with the best efforts of palliative care.
The Australian ‘Palliative Care Outcomes Collaboration Report 2016’ includes numerous tables documenting relevant data. Table 1 - ‘Benchmark Summary’ shows that a realistic goal for ‘moderate to severe pain, becoming absent or mild’ was only 60% and yet this benchmark was not achieved. 10. The benchmark for ‘moderate to severe breathing problems, becoming absent or mild’ was also 60%, yet this outcome was only achieved for 46.6% of patients in inpatient services and 35.8% of patients using community palliative care services. 10. Even if palliative care services reached their current benchmarks, there would still be a large number of patients whose pain or suffering was unable to be alleviated.
Table 31 from the same report shows that the percentage of patients experiencing severe pain can be as high as 10.3% in the unstable phase. Even for patients in the terminal phase of their terminal illness (usually the last two days of life), 3.6% had severe pain, 3% had severe psychological distress and 6.5% had other severe physical symptoms. 10.
ISN’T TERMINAL SEDATION AN OPTION WHEN PAIN OR SUFFERING CANNOT BE RELIEVED?
Terminal or palliative sedation is a last resort option, if a patient is experiencing intolerable and unrelievable suffering. However, as the Victorian Inquiry found ‘doctors take differing approaches to continuous palliative sedation, including how deeply and quickly sedation should be administered.’ 8. As a result, not all patients will receive sedation to a level where their pain or suffering is alleviated.
Yet even terminal sedation doesn’t guarantee a peaceful death. As Australia’s most senior palliative care physician, Professor Ian Maddocks, explains:
ARE DOCTORS CURRENTLY ASSISTING THEIR PATIENTS TO DIE?
As the practice of assisted dying is currently illegal, there are significant impediments to accurately quantifying the extent to which these practices occur in Australia. However, research over many years has shown that some medical professionals are already assisting some of their patients to die but it is happening covertly, irregularly and usually at an advanced stage of illness (often hastening death by a week or two). 11.
IF ASSISTED DYING IS ALREADY HAPPENING, WHY CAN’T WE LEAVE THINGS AS THEY ARE?
According to the findings of the Victorian Inquiry into End of Life Choices, ‘existing end of life care legislation is confusing in many ways, and causes uncertainty, particularly for health practitioners.’ 8. This legal uncertainty can lead to under-medicating for fear of criminal liability for hastening a patient’s death. This confusion and uncertainty can affect dying patients and their families and lead to unnecessary and prolonged suffering and that is why we shouldn’t leave things as they are.
Although there are some doctors who have actually provided lethal medication to dying patients, very few are willing to admit to it publicly (Dr Rodney Syme is one exception). Because this practice has to be done covertly, a dying patient seeking the option of a peaceful death would find it very difficult to find doctors like Dr Syme.
Some people consider the practice of palliative sedation to be a form of ‘assisted dying’. However, as the Victorian Inquiry found, because ‘doctors take differing approaches to continuous palliative sedation, including how deeply and quickly sedation should be administered’, 8. it means not all patients will have all their suffering alleviated.
Whether it is the provision of lethal medication or the provision of terminal sedation, because these practices are not regulated, there are no safeguards or monitoring and the ongoing unlawful practice of assisted dying brings the law into disrepute.
WILL AN ASSISTED DYING LAW CHANGE THE DOCTOR PATIENT RELATIONSHIP?
An assisted dying law may change the doctor patient relationship, however, evidence shows it is likely to be a positive change. Under an assisted dying framework, the paternalism encouraged by our existing laws is likely to be replaced by a partnership. Instead of doctors deciding unilaterally how much, or how little, or how quickly, a dying person should have their suffering relieved, it becomes a conversation between the doctor and that dying individual.
Assisted dying laws make it possible for honest conversations to start early after a terminal diagnosis. Patients can have these conversations with their doctors but also with family members and their dying can be managed in a rational and humane way. Providing this level of control has a significant palliative effect in itself.
According to a recent report from California, one year after their law was introduced, ‘physicians across the state say the conversations that health workers are having with patients are leading to patients’ fears and needs around dying being addressed better than ever before. They say the law has improved medical care for sick patients, even those who don’t take advantage of it.’ 12.
CHANGING THE LAW
Under the current law, if a dying individual is experiencing unbearable and unrelievable suffering, they have just three legal options:
- They can commit suicide, but this is a lonely, desperate and often violent option.
- They can end their own life by refusing all medical treatment, including food and water, and basically starve and dehydrate to death, but this is usually a long and psychologically painful process for the patient and their family.
- The third legal option can occur after a dying patient has been suffering for some time. If their suffering has become unbearable and unrelievable, their doctor can slowly put them into a coma – even without their consent – leaving them to die over days, or sometimes weeks. As discussed earlier, this is called ‘terminal or palliative sedation’, but there is a lot of suffering that has to be experienced before this last resort option is taken and it can be distressing for all involved.
The Victorian Inquiry into End of Life Choices recommended introducing an assisted dying law because, after gathering evidence over a 10-month inquiry, they found:
- Existing Australian laws relating to end of life care are confusing and cause uncertainty, particularly for health practitioners.
- The current illegality of assisted dying can cause great pain and suffering for those who endure terminal
- Repeated examples of inadequate pain relief being delivered to dying patients by doctors for fear of breaking the law.
- An inability of palliative care, despite its many benefits, to relieve all suffering.
- Although courts impose lenient penalties without jail time on people who do assist loved ones to end their lives, the potential burden of a court battle compounds carers’ distress and
- Doctors being forced to break the law in order to help their patients die, but having to do so without support, regulation, or accountability.
- Trauma experienced by families watching seriously ill loved ones’ refuse food and water to expedite death and finally relieve their suffering.
- People experiencing an irreversible deterioration in health taking their own lives, often in horrific circumstances.
In its conclusion, the Committee rejected maintaining the status quo as ‘an inadequate, head-in-the-sand approach to policy making’ and the plight of the Australians discussed in their report. They recommended a law that would allow people to seek assistance to die. In their words, this would: ‘not only enable patients end of life wishes to be respected, but also to protect patients, particularly vulnerable people, from abuse and coercion’.
The Committee also found strongly in favour of increased resources and funding for palliative care. In so doing, they made it abundantly clear that assisted dying and palliative care were both important points on the spectrum of end of life care in general.
- Francis, N. (2017), Dying for Choice, Professor Somerville Should Retract Indefensible ‘Suicide Contagion’ Claim, <http://www.dyingforchoice.com/docs/SomervilleIndefensibleSCclaimApr2017.pdf>
- Roy Morgan Poll, November 2017, <http://www.roymorgan.com/findings/7373-large-majority-of-australians-in-favour-of-euthanasia-201711100349>
- Francis, N. (2017), Dying for Choice, Opposition to Assisted Dying in Australia is Largely Religious, <http://www.dyingforchoice.com/docs/OppositionToADisLargelyReligious2017.pdf>
- Levett, C. 2017, NSWNMA Media Release, 21 July 2017.
- Review of AMA Policy on Euthanasia and Physician Assisted Suicide – Member Consultation Report (2016)
- Owler, B. 2017, National Press Club: Brian Owler, <http://www.abc.net.au/news/programs/national-press-club/2017-10-13/national-press-club:-brian-owler/9047378>
- Teo, C. 2017, Dying with Dignity NSW Facebook post,<https://www.facebook.com/dwdnsw.org.au/>
- Parliament of Victoria, Legal and Social Committee (2016), Inquiry into End of Life Choices – Final Report.
- Guarascio F. 2016, 17-year-old is first minor to be granted euthanasia in Belgium, <http://www.reuters.com/article/us-belgium-euthanasia-minor-idUSKCN11N09P>
- Palliative Care Outcomes Collaboration, Patient Outcomes in Palliative Care, National Results for January – June 2016.
- White, L. & White, B. 2012, Australia 21 Background Paper, How Should Australia Regulate Voluntary Euthanasia and Assisted Suicide, Health Law Research Centre, QUT
- Karlamangla, S. 2017, There's an unforeseen benefit to California's physician-assisted death law,<http://www.latimes.com/health/la-me-end-of-life-care-20170821-htmlstory.html>