Submission to Inquiry into Voluntary Assisted Dying Joint Committee | South Australia | August 2019 This is page is left blank intentionally to allow for double-sided printing 2 “Palliative care services are not offering what a percentage of their patients desperately need. Palliative care has become a mantra chanted by … politicians and religious organisations opposing euthanasia.” − Clive Deverall, founder of Palliative Care WA “While pain and other symptoms can be helped, complete relief of suffering is not always possible, even with optimal palliative care.” – Palliative Care Australia “It is not the role of any health care team to suggest its ministrations can give meaning, purpose and dignity to a dying person’s remaining life if that person feels that these are irretrievably lost … palliative care is a model of care, not a moral crusade.” − Professor Michael Ashby, Director, Palliative Care, Tasmanian Health Service 3 This is page is left blank intentionally to allow for double-sided printing 4 What’s in this Submission INTRODUCTION Page 7 PART A What The Evidence Shows Page 9 The need for Voluntary Assisted Dying laws in Australia PART B Assisted Dying In South Australia Today Page 15 An incoherent, largely unregulated, and inequitable legal situation PART C Beyond Pain Page 31 Why more resources for palliative care alone will not address the need for Voluntary Assisted Dying PART D Responding To Key Arguments Against VAD Page 59 PART E Fear. Uncertainty. Doubt. Page 81 Tactics used to create an alarmist picture of assisted dying PART F Propaganda Case Studies Part 1. Fatal Flaws Page 105 Part 2. Archdiocese of Sydney Video Series Page 114 PART G Evidence Considered By The Victorian Committee Page 117 Into End-Of-Life Choices APPENDIX In Their Own Words Page 123 When palliative care no longer works BIBLIOGRAPHY Page 167 5 This is page is left blank intentionally to allow for double-sided printing 6 Introduction Since 2016, when the South Australian Legislative Assembly rejected, by just one vote, the State’s 16th attempt at Voluntary Assisted Dying (VAD) legislation, the landscape around this debate has changed dramatically. Since then, we have witnessed the two most comprehensive examinations of end-of-life care ever undertaken in Australia. Though conducted independently, these cross-party parliamentary inquiries, in Victoria and Western Australia, came to the same conclusions: • Even the best palliative care cannot relieve all suffering for terminally ill patients; • Doctors and nurses are delivering inadequate pain relief to dying patients for fear of breaking the law; • Family and friends are being traumatised as they watch loved ones die agonising deaths; • Doctors are breaking the law to assist patients suffering irremediably to die – but having to do so in secret, without consultation, oversight, or regulation; • Elderly and terminally ill people taking their lives, often in horrific circumstances. Both inquiries found Australia’s existing end-of-life laws to be inadequate. Both recommended, by a clear majority, that VAD be legalised as part of a broader approach to better end-of-life care including more resources for palliative care. These findings are supported by a raft of international, peer-reviewed evidence gathered from multiple jurisdictions with VAD laws in place. Jurisdictions where, after 10, 15 and even 20 years, there is still widespread public and political support for assisted dying; where fears about the abuse of the vulnerable have not been realised; and where there is no loss of faith in doctors or degradation in palliative care – in fact their opposite. More than anything else, this combined evidence shows that it is possible to write sensible and compassionate laws, with strong safeguards, to assist people to die good deaths. The Victorian and Western Australian inquiries heard testimonies from people of all ages and from all walks of life, describing with great clarity the damage being done in the absence of VAD laws. From the petitions made to the Parliament during the 2016 debate, South Australia is no different. Australians have long accepted that they should be free to make their own decisions about how their lives will end. It is a principle already established in Australian law. Every opinion poll conducted on the issue over the past two decades has recorded more than 70% support for giving terminally ill Australian access to VAD. In the most recent polls, that support has grown to near 90%. In 2017, Victoria became the first state in Australia to pass an assisted dying law. It came into effect in June this year. But that law, as significant as it is, covers only one in four Australians. There is an urgent need for VAD laws for all terminally ill people in this country. 7 - INTRODUCTION - Hastening death is already legal in South Australia. However, the laws as they currently stand are unfair, incoherent, and the source of mistreatment and abuse. • Under South Australian law it is legal, if you are dying, and wish to hasten an end to your suffering, to do so slowly and painfully – by refusal of treatment, starvation and dehydration. This is not considered suicide. • Under South Australian law, when your suffering can no longer be controlled, it is legal to be drugged into a coma, from which it is not intended you awake, by a doctor (though entirely at their discretion, depending on their beliefs). • Under South Australian law, it is legal to end your suffering by taking your own life. We know now, as a result of the Parliamentary Inquiries in Victoria and Western Australia, that suicides of the terminally and chronically ill are happening every week. Brutal, lonely deaths that leave ineradicable scars in the families and first responders left to pick up the pieces. What is not legal under South Australian law, if you are dying, is to end your suffering quickly and painlessly, at a time of your choosing, with the support of your family and medical team. Instead, we have a dangerously unregulated system where, as the Victorian Inquiry found: Doctors practice unlawful assisted dying despite its prohibition and despite prospective liability for serious crimes. This is happening without regulation, without support, without transparency or accountability, and from the evidence received, sometimes without consent. We know from the Western Australian Inquiry, and other research and doctors’ accounts over the last two decades, that this same unregulated practice of assisted dying is happening across Australia. In this unregulated system no questions are raised about threats to vulnerable people. No one is examining, or vouching for, doctors’ actions. Yet we are told by opponents to VAD that this is safer than a system where doctors are guided by strict regulations and held accountable by law. Opponents also argue – in fact, it is their main argument – that if palliative care were properly resourced, no one need suffer so there would be no need for VAD. This argument doesn’t just defy logic. It defies facts. Here are Palliative Care Australia’s own words. While pain and other symptoms can be helped, complete relief of suffering is not always possible, even with optimal palliative care. While Go Gentle Australia strongly supports greater resourcing for palliative care, all the resources in the world will not ease the suffering of all dying patients. It is not medically possible and palliative care’s own words and statistics say so. So, too, do the powerful testimonies from doctors and nurses who have stood helplessly by in the face of terrible deaths. Increased resources will not help hasten a dying patient’s death, or alleviate their suffering quickly, if it goes against the beliefs of the treating doctor or institution to do so. There are too many testimonies now, from too many families, about terrible, prolonged deaths within palliative care, that attest to this. Only a change in the law, which protects a patient's rights at the end of life, will do so. Andrew Denton Director, Go Gentle Australia 8 Part A What The Evidence Shows The need for Voluntary Assisted Dying laws in Australia WHAT THIS SECTION IS ABOUT The debate about Voluntary Assisted Dying (VAD) in Australia has transformed dramatically in the last three years. In that time, two comprehensive State parliamentary inquiries into end-of-life care have each put forward undeniable evidence of the need for such laws. Of particular impact has been the evidence from State Coroners detailing the horrific suicides happening every week among the terminally and chronically ill. The need for legal reform is reflected in consistent polling over the last decade which shows that our parliaments are lagging behind public demand in addressing this issue. This delay is even harder to explain because the core principle of Voluntary Assisted Dying – that a competent adult should be able to decide what is done with their body – is already established in Australian law. 1. PARLIAMENTARY INQUIRIES Since 2016, two comprehensive cross-party parliamentary inquiries into end-of-life care – the first of their kind in this country – have found Australia’s existing laws are inadequate when dealing with the needs and wishes of terminally ill Australians. 1.1 The parliament of Victoria’s inquiry into end of life choices, 2016 Running over 10 months, with more than 1000 submissions and public hearings involving 154 witnesses, the parliament of Victoria’s 2016 inquiry into end of life choices1 found: • Repeated examples of inadequate pain relief being delivered to dying patients by doctors for fear of breaking the law. • The inability of palliative care, despite its many benefits, to relieve all suffering. • People being put on trial for helping those they love find a merciful end. • Doctors breaking the law in order to help suffering patients die, but having to do so without support, regulation, or accountability.