RIGHTS OF THE TERMINALLY ILL BILL 2013
Debated resumed from 2 May 2013.
The Hon. MARIE FICARRA
(Parliamentary Secretary) [10.40 a.m.]: The Rights of the Terminally Ill Bill 2013 has stirred up a lot of community feedback and that is a good thing considering the implications for the social, physical and mental consequences of this legislation. I am sure that those supporting the bill believe they are motivated by compassion, care and understanding, and are driven to change the laws that have existed in Australia since Federation. The Hon. Cate Faehrmann was quite moving in her second reading speech when referring to the pleas from many persons who have had or still are in great pain and discomfort from their acute or chronic illnesses and diseases.
All members feel deeply about instances of human suffering, depression, loneliness and despair. I could stand here and give my personal insights into the death of, say, my beloved father from mesothelioma. My family and I cared for my father closely through his diagnosis two years previously and I recall being by his bedside in the last week and seeing the loving care of nurses, doctors and the Sisters of Mercy at the Sacred Heart Hospice. I could talk about our family's sadness at watching our mother deteriorate over years from dementia, finally dying from a stroke. Again, she received loving care from the Scalabrini doctors, nurses, healthcare workers, sisters and priests at the Austral aged care facility. All of us have so many cases we could relate that they could take up our entire speaking entitlement of 20 minutes each. I will not be doing that. I will work on the premise that those supporting this bill do so with the utmost good intent.
My opposition to the bill is based on the ability to abuse any safeguard against the wrong taking of life. No legislation anywhere in the world has prevented abuse or errors of judgement—either the person wanting to end life and/or the medical practitioner assisting in this quite unnatural process. The bill before us has been criticised for so many shortcomings that it is destined to be defeated, as it should be. Similar attempts by The Greens and Independents in other Parliaments in Australia have failed, and this bill will go the same way. Polls indicating high public support for euthanasia are always associated with emotive questions based on the case of a hopelessly ill patient dying in pain. No background information is given to the respondents regarding palliative care, medical and nursing responsibilities, and the incidence of treatable depression in such cases and the range of patient care options available to the patient. These poorly constructed, emotive and simplistic polls do not change my responsibility as a legislator for all the community, a responsibility we all share on behalf of our constituents.
My 97-year-old mother-in-law, Alice, who is still very mentally capable, tells me of the discussions she has with friends living in her retirement village in Yowie Bay. They read the newspapers, view their televisions and listen to radio talkback sessions and see and hear all the worrying media reports on euthanasia. And, yes, the elderly do feel vulnerable, especially those worried about developing dementia. We have been warned it will be a baby boomer tsunami. My husband, Alan, and I remind Alice when she comes over to our place, usually each Thursday afternoon to spend weekends with us, that she is not a burden but a contributing member of our extended family and that we love her very much. It is important that the elderly feel needed and wanted and not be alarmed by such dangerous legislation as that before us today.
We have all received thousands of emails, letters and phone calls on this issue, including those from the terminally ill, doctors, nurses, pharmacists, and aged care and healthcare workers. I can say I have been reassured by the straw poll that I took. Yes, it has reflected my own views framed over many years of personal experience and from working with doctors and nurses in health care. I have been fortunate to have as a cousin Dr Michael "Mick" Barbato, one of Australia's most respected palliative care physicians. Every time I attend Palliative Care NSW meetings and functions and I mention Mick's name I am surrounded by the nurses and palliative caregivers who deal with all issues surrounding the care of the dying. In fact, I was fortunate in knowing quite a bit about the science and management of pain in the care of the dying throughout my youth and young adulthood.
It is a noble profession and I express all the admiration and thanks of so many Australians for our great doctors, nurses and caregivers who have chosen palliative care as a career path. It is difficult to imagine such a working life, but those who realise quite early that this is their direction in life follow a career in care and healing, giving patients and those around them resilience and calm. The ability to give patients the emotional and physical strength and the time to get their affairs in order and say their farewells in a dignified manner is much respected. Patients, family and friends who have seen palliative care at its best understand much of the calming, soothing way that these healthcare angels assist those in their care by seeing them in action.
I record my special thanks to Palliative Care NSW, in particular the dedication to leadership in the field over many years by Peter Cleasby, the president, and Linda Hansen, the executive officer, along with all their executive and members. I acknowledge the level of training, research and support for all their members working with their patients, family and friends. It is so moving to be amongst them and to see their respect for life, the aged, the vulnerable, the depressed, the anxious and those suffering from chronic pain who they can assist. I often wonder how they can bounce back after the death of a person that they care for lovingly for a period of time, but they do as they know that the next patient will be grateful and welcoming of their assistance in all aspects of their final journey.
I was very fortunate during my youth and later years to come in contact with so many of these great carers. Indeed, my husband, who practised as a doctor in Ballarat in his younger years, is very proud of the work he did in assisting the establishment of the Ballarat Hospice. It has operated well for over 23 years and was instrumental, along with other palliative care centres around the nation, in informing the community of the advances in medicine, pain relief, chemotherapy, and attention to mental health and social issues that many persons who are dying need help with. Palliative care has evolved into a well-recognised field of medicine and needs to be introduced as early as possible when patients are made aware of their terminal state, not left until the late stages of their illness. Advanced care planning and addressing psychosocial risk concerns such as fear of loneliness and intensifying pain can alleviate much anxiety. Communicating and addressing each of these concerns thoroughly is all part of good holistic palliative care.
We all know much more resourcing is needed especially in rural and regional Australia. I take this opportunity to thank the Minister for Health, the Hon. Jillian Skinner, for her support for palliative care resourcing both in opposition and in government. She has always been a great supporter and has always been backed up by the Premier and the Treasurer. In October last year she launched the "NSW Government plan to increase access to palliative care 2012-2016". This Government has pledged an additional $35 million over four years, on top of $86 million annually, for specialist palliative care. The Minister said:
While 70 per cent of Australians say they want to die at home, only 16 per cent do. Over half die in hospitals, 20 per cent in hospices and 10 per cent in nursing homes.
NSW already has some good palliative care services in both the public, private and non-government sectors, delivered by a variety of organisations, but there are not enough of them and they are not equally available to all communities.
We know we must build up community-based options. And we are seeking to involve families more directly in the provision of palliative care to their loved ones, to make it possible for more people to have a real choice about being able to die at home.
I take this opportunity to highlight the work of Professor Richard Chye, Area Director of the South East Sydney and Illawarra Health District. Professor Chye spent time in the United Kingdom as an oncologist, working with cancer patients, including palliative care patients. He developed an understanding that people needed relief for the many aspects of dying, not just for pain and discomfort—although those acute issues often need to be dealt with before physical, psychological, social, cultural and spiritual needs. All these aspects are important to patients and their families and friends as their final journey evolves. Professor Chye was appointed Director of Palliative Care at Prince of Wales Hospital in 1997, with his role extending to St Vincent's and the Sacred Heart Hospice the following year.
Professor Chye's appointment as Conjoint Associate Professor in Medicine at New South Wales University in 2004 has allowed his approach to palliative care to wisely guide many medical students. Professor Chye has been responsible for the enhanced teaching of palliative care in the new medical curriculum of the university, which has been adopted by many other educational institutions in the Asia-Pacific. His approach has also been adopted and followed by other Australia international medical schools. In concert with the Cancer Institute of New South Wales, Professor Chye continues to develop research into palliative care to ensure that patients receive the best care. I have joined my colleague in this place the Hon. Greg Donnelly, who is co-chair of the Parliamentary Friends of Palliative Care, in bringing many members of this Parliament in contact with palliative care professionals such as Professor Chye, Peter Cleasby and Linda Hansen, as well as nurses, psychologists, therapists and oncologists. They have provided great insights into the diverse and important needs of the dying.
I acknowledge the work of LifeCircle to engage family members, friends and their communities in supporting people to live well right to the end. Their dynamic and passionate chief executive officer, Brynnie Goodwill, has introduced me and other members of Parliament to LifeCircle volunteer mentors, telephone support volunteers and community ambassadors. They are terrific people, many of them volunteers. They promote resilience and encourage conversations amongst family members and friends who are involved in this caring final journey. These approaches help those who are dying to live their last stage of life with satisfaction and create a good end. These loving and dedicated volunteers have assisted many tens of thousands of families for more than a decade. All members have received many emails about this topic; however, I cannot do justice to them all. Dr Catherine Lennon, a member of the Royal Australian College of General Practitioners [RACGP], stated:
The Australian Medical Association and Palliative Care Australia NSW oppose euthanasia. I am a member of the Royal Australian College of General Practitioners which promotes palliative care and excellent medical care. The RACGP does not promote euthanasia, suicide or assisted suicide.
She notes concerns about what has happened elsewhere:
Netherlands Groningen protocol legalised euthanasia of babies since 2005. Switzerland's Dignitas clinic has assisted suicide of people who do not have a terminal illness, e.g., 23-year-old rugby player Daniel James was paralysed due to a rugby injury.
If this bill passes it is highly likely to result in a huge increase in suicide as has occurred in the Netherlands and Belgium.
... most patients asking for lethal injections or other forms of assisted suicide actually have depression which affects their cognition and usually respond well to treatment and support.
... if this bill passes there will be many people with treatable depression or other treatable symptoms or treatable conditions who will be given lethal injections ...
... the current case of Erin Berg (a young Perth mother with four children) who had postnatal depression.
Erin took Nembutal as instructed by Dr Phillip Nitchke's book (and spoke to him on the phone). Erin had excruciating side effects and [died] after 10 days in intensive care. Her family are currently suing WA health dept for failing their duty to care to treat her depression.
No euthanasia law can provide adequate protection for the vulnerable.
Doctors, as healthcare providers, are expected to protect and promote life, not end life or encourage the ending of life. The focus should be on providing excellent medical care, palliative care and other forms of support to patients. Patients already have the right to refuse medical treatment and advanced care directives.
Euthanasia sends a message to the vulnerable, sick and elderly that terminating your life is a better option than becoming a "burden" on family and friends.
Dr Jennifer Bowden states:
As a young doctor I would be deeply troubled about the shift from providing good quality and compassionate caring palliative care to also including euthanasia as an option. During my recent palliative care rotation most of the consultants I spoke to were also very openly against this move. It undermines the relationship and the trust that patients have with their doctors.
Dr Robert Allan Barden stated:
I am a retired GP, having spent 36 years in General Practice. Pain can be controlled, despair can't. The people I found asking for something to end it all were those who felt they were a burden on their relatives. Sure they made a case for being in pain, but it was not the underlying reason. Euthanasia will not make us a more compassionate society. It will simply hide our unwillingness to face the reality of our responsibilities to our loved ones. Like everything else, first you make something permissible, next it becomes compulsory. What a terrible way to deal with an ageing population.
Dr Claire Smith stated:
I write as a former Registered Nurse working in Oncology and a specialised Palliative Care Unit, and someone who has cared for and lost family and friends from terminal cancer and other degenerative illnesses.
There are many reasons not to accept this legislation but I limit myself to four:
1. There is no protection in this bill for people with clinical depression requesting assisted dying.
2. The availability of assisted dying places an intolerable burden on the patient to end the suffering of their families.
3. The definition of "terminal illness" in Part 1 (3) is too broad.
4. Similarly while Part 2.7(1) (d) requires that patients have severe pain and suffering and are informed about the alternatives, there is no requirement that available treatments have been exhausted, or that the medical practitioner is a specialist in Palliative Care. This effectively denies the patient best care available and presents assisted dying as the only option.
Mr Christopher Small stated:
As a pharmacist who works closely with the elderly, the very sick and the dying in nursing homes and aged-care facilities I see what real mercy and compassion is for them. Real mercy and compassion is tending to their needs in terms of pain-relief, providing good medical and nursing care and meeting their physical and emotional needs.
It is one of the measures of a decent society to adequately care for the sick, the dying and the disabled.
Please don't allow yourself to be convinced that adequate safeguards against abuse can be provided when it comes to euthanasia.
The bill before the House is extremely dangerous. It is not supported by the majority of the community. The so-called safeguarding provisions in the bill, as with so many other failed bills in civilised society, show us that, as legislators, there is a societal danger in allowing euthanasia. This Government will continue to value all lives equally and promote holistic palliative care that addresses the physical, mental and social needs of all people to ensure that they die with dignity. The medical profession should never be asked to participate in the taking of life for any reason. The Australian Medical Association, the Royal Australian College of General Practitioners and the Royal Australian and New Zealand College of Psychologists oppose euthanasia or physician-assisted suicide. This Government will never legislate to undermine the trust that is placed in our healthcare professionals. As civilised human beings we should always protect, care for and support the elderly, the sick and the vulnerable in our community. I strongly oppose this bill because it would legislate and legalise the taking of life.
The Hon. WALT SECORD
[10.59 a.m.]: The object of the Rights of the Terminally Ill Bill 2013 is to provide a legislative framework for the rights of terminally ill persons to request and receive assistance to end their lives voluntarily. Under this framework, terminally ill persons may be assisted by medical practitioners to administer a life-ending substance. Members will be aware that I have spoken on this policy area previously. I have a special interest in the area of aged and community care, but I acknowledge that euthanasia is not exclusively an aged care issue. Anyone can be struck down by a terminal illness or a debilitating condition at any stage in their life. However, the impact of euthanasia in all practicality affects our aged care community more than any other.
I have thought about this policy area for a number of years. On 14 June 2012 I made a five-minute adjournment speech spelling out my views. Therefore, when we vote on this bill it will not be a surprise to those members who heard that speech that I will oppose it. At another time in my life and career many years ago I admit that I supported the concept of euthanasia, but I did so perhaps without considering why. I supported the concept of ending one's life if one thought that it was no longer possible to go on. To this day, I still have great sympathy for any person for whom that is a real consideration. However, what we are discussing today is the law and the legal framework.
Several years ago I reached the conclusion that it is not possible to codify this aspect of human desire and the desire to determine the timing and manner of one's death. I believe it is impossible to develop adequate legislative safeguards to protect people from the misuse of these laws and I have not yet seen a legislative model that cannot be exploited. The Rights of the Terminally Ill Bill 2013 is no exception; it is a flawed bill. There has not been adequate consultation with the medical community about the bill and there is real concern on the part of stakeholders and communities about its definition of a "medical professional". That clearly demonstrates that there has not been adequate and extensive discussion within the medical community about this legislation.
The proposed review committee—the apparent safeguard—will meet after the death. The potential problems with that are obvious and the consequences total. In short, there are flaws and loopholes in this model. When the consequences of any exploitation of loopholes can be the legal yet wrongful taking of life then I must withhold my support until a successful model is presented. That is the primary reason for my opposition. I do not believe it is possible to properly codify this area of law. Instead, it is my view that the understandable wishes and fears that drive community support for bills such as this would be better addressed if State, Territory and Federal governments were to strengthen palliative care in Australia, especially in rural and regional areas. Many ordinary people have said in different ways, "I am not afraid of dying; I am afraid of suffering." Indeed, attempting to codify rights to assist in a death is one potential legislative response to that community concern. I suggest that deploying more resources to ensure that suffering is minimised is a safer response than one that contravenes a legislative principle that has stood for centuries. That principle is that human life must be protected above all other legal considerations.
My views on this issue were shifted during my time as chief of staff to the Minister for Ageing in Canberra from 2007 until 2009. It was during that time that I saw the best in aged and community care and the worst. I met people such as Mr Brian Lippman, who worked with homeless, alcoholic men needing aged care in Melbourne; Dr Stephen Judd of HammondCare, Christian charity, who has dedicated more than 25 years of his life to aged and dementia care; Mr Richard Gray of Catholic Health Australia; Dr June Heinrich, who ran Baptist Community Services; the various Jewish aged care facilities in Melbourne and Sydney that operate world-class facilities such as the Montefiore Home; and the dedicated individuals who provide aged care for Indigenous people in remote areas, in some cases driving for four or five hours in four-wheel drive vehicles from Uluru in the Northern Territory to provide that care. They have made me want to find new and bold ways to protect the frail and aged in our community. That was a heart-wrenching time, but it was also a time of personal development.
Of course, I acknowledge that euthanasia is not only an aged-care issue; it can arise at any time when life is threatened. The reason my views shifted while I was working in the aged care sector has less to do with working with the aged and more to do with working with the vulnerable. I repeatedly saw how age and illness made people vulnerable and susceptible to exploitation by others. We encountered a nursing home where residents were not allowed to see their families in their rooms because the operators had discovered that family members were taking the extra cash that they had received as part of a Federal stimulus payout.
I met commercial providers, particularly those in south-east Queensland, who literally saw aged care facilities as prisons. I remember remarking to one commercial provider, "They are not inmates. In fact, inmates in Queensland have more rights than your residents." These Queensland commercial, non-faith aged care providers were interested only in profits. They were offended when the Minister introduced minimum standards for food and water and they objected to unannounced inspections by Commonwealth health officials to ensure that they were meeting minimum standards, particularly during the Christmas period. I recall a situation where there were no staff available at a nursing home in Victoria on Christmas Day. We arranged emergency nurses to look after the residents. On another occasion, catering staff in a Victorian nursing home divided a single chicken between the residents of an entire nursing home.
The saddest thing was discovering nursing home residents who had been abandoned by their own family members. A nursing home in Melbourne that closed because of financial difficulties had not updated residents' contact details so families could not be found when the residents needed to be relocated. The people in age care whom I met were vulnerable to not only exploitation by a ruthless few but also their own diminished self-worth. When we are sick or weak we naturally think less of ourselves; we see ourselves as a burden and we undervalue the experiences that can still be accessed. That is a completely normal part of illness, but one that should not be exploited.
Almost 20 years after its passage there is still considerable community debate about Oregon's Death with Dignity Act. I acknowledge that we have a different medical system in Australia, but things change over time. I have been advised that three main issues have arisen as a result of the enactment of the Oregon legislation. First, there is an unseemly argument that the law allows the Government and insurance companies to transfer resources from those who want to die to those who want to live. Secondly, it is said that people with terminal illnesses who do not have full health cover feel pressure to end their lives early so they are not a financial burden on their families.
The third issue—and this is most troubling—is the prospect of financial manipulation. Unfortunately, it is said that people overseas have hastened the death of a family member if they were anticipating a substantial financial again. That is disgusting and sickening, but unfortunately it is a reality. That is assisted by the fact that the primary reason cited by people in Oregon for deciding to end their life is that they no longer want to be "a burden" to others. Not wishing to be a burden is a common response to illness. It is a selfless and natural response, but regrettably it makes exploitation of vulnerability far too easy.
This is the primary message I bring from my time in aged care: not that many of the people to whom this bill might apply are old, but that all of them are deeply vulnerable. It is the responsibility of the Government to provide security and dignity for the nation's elderly when others cannot or will not. This bill potentially erodes that security. That is my strong view. I recognise that there are strong views on both sides of the debate. I express my thanks for a personal briefing provided by Mr Phil Yeo and his wife, Joan. I publicly apologise to them for being unable to vote for the bill. No-one could listen to their personal story and not be moved. They are now considering whether they will go to Switzerland if these laws are not passed. I understand that. Indeed, I have received hundreds of emails, letters and telephone calls from people on both sides of the argument. I believe that all views are motivated by what each person deeply believes to be a humanitarian approach.
I acknowledge that currently forms of voluntary euthanasia are legal in Belgium, Luxembourg, the Netherlands and Switzerland. In the United States of America, Oregon and Washington State have similar forms of legal voluntary euthanasia. In Australia we are broadly divided on the issue and my position reflects that. I have great sympathy for those suffering serious and terminal illnesses, but I have reached the conclusion that I am unable to support these laws. I do not approach this from a religious perspective like a number of my colleagues; I approach it from a legislative perspective. I believe that when we legislate we have a number of benchmarks. Does it resolve a harm or malice? Is it evidence based? Can it potentially make a situation worse or create a new malice?
For the reasons I have previously outlined, I believe that this bill fails against those tests. Yes, community fear about suffering at the time of death is a completely real and legitimate concern. But legalising death is not the only solution at hand—palliative care is another. This solution is one that has the potential to create new and serious malice in its wake. I thus far believe it is impossible to successfully codify this area of law to codify the final minutes of a vulnerable life. The solution proposed by this bill does not develop adequate legislative safeguards and frameworks from abuses of euthanasia laws.
Instead, State, Territory and Federal governments should be strengthening palliative care in Australia. Advocates of euthanasia frequently raise the ease of suffering as their primary concern. And that is exactly what good, well-funded palliative care achieves. Palliative experts say we now have reached the stage at which we have the expertise to respond through medication to almost all levels of pain. That is the reality of modern medicine and advances in modern science. Palliative care is about helping people leave this world with respect, dignity and minimal pain. I acknowledge that patients in rural and regional areas face particular challenges when it comes to accessing palliative care. Therefore, I believe that more needs to be done in this area. I hope the State Government increases funding and support in this field.
Sometimes, and unfortunately, the community confuses minimising pain with euthanasia, but they are different things. It is only through minimising pain through palliative care that we can properly help the elderly or those struck down with terminal illness at any stage to have at the end of their lives without jeopardising the security of that life. For this, and the other reasons I have outlined, I oppose the Rights of the Terminally Ill Bill 2013. I thank the House for its consideration.
Reverend the Hon. FRED NILE
[11.13 a.m.]: On behalf of the Christian Democratic Party I strongly oppose the Rights of the Terminally Ill Bill 2013 introduced by The Greens. I call on all members of the House to vote against the bill. We believe that a civilised society should not deal with the problem of sick and suffering persons by killing them or allowing them to kill themselves, but by relieving their distress and making the required support available. Furthermore, we believe that such a path would lead to vulnerable patients being persuaded to request assisted death when it is not what they really want.
If this legislation were passed—I trust it will not be passed—it would change a basic belief in Australia by more than 80 per cent of the population that God gives life, and God takes life: not man. That is why Australia has such strong laws against murder and manslaughter. The Christian Democratic Party believes in the sacredness and sanctity of everyone's life irrespective of their age, race, religion or colour. Every human being deserves compassionate healthcare when required. When the Northern Territory changed its laws I met Aboriginal people who told me they will not go to a public hospital because they are frightened now that a white doctor may kill them. They knew there was a rejection of Aboriginal people in that community. We do not want that to happen in New South Wales.
This bill changes the role of doctors and nurses from saving life to taking life. It changes the role of hospitals from saving life to taking life. On 8 May Rod Benson, from the New South Wales Council of Churches, which represents the mainstream churches in this State, issued the following statement:
Support palliative care not euthanasia
The NSW Council of Churches today called on all members of the NSW Legislative Council to vote against a private member's bill that would legalise euthanasia and assisted suicide in New South Wales.
"This is a dangerous bill. If enacted, the bill will redefine the value of the lives of some people as not worth living. Our challenge as a society is to transform the experience of people who are disabled or dying, not to intervene to end their lives," the President of the NSW Council of Churches, the Reverend Dr Ross Clifford, said.
"For Christians, the Bible makes it clear that human life and human dignity must be protected. We already have good laws and policies that support compassionate care of the terminally ill. If the system is not broken, don't try to fix it," Dr Clifford said.
"Advances in palliative care make assisted death unnecessary. Instead of wasting taxpayers' money on reviews of every death by euthanasia, the NSW Government should improve resources for palliative care so that terminally ill patients in our community receive the care and comfort they deserve at the end of life to minimize suffering."
"This bill will enshrine the right to kill and be killed in New South Wales law. It will endanger disabled people who cannot speak for themselves, and who may be seen as an unnecessary burden by their family or the state. We cannot be sure the proposed law will never be extended to include incapacitated patients. The legal right to kill patients does nothing to enhance human dignity, yet this bill makes medical homicide legal. Should we dismiss concerns of doctors who say, 'This is not what we became doctors to do'? I urge all NSW politicians to vote against the Rights of the Terminally Ill Bill 2013," Dr Clifford said.
The Christian Democratic Party believes that modern advances in palliative care can make assisted death unnecessary. Advances in palliative care have improved the symptom control of patients at the end of life and, where expertly used, suffering is minimal. The World Health Organisation recommends early introduction of palliative care for patients with terminal illnesses, not as a last resort. Where suffering is due to existential and not physical causes, pastoral or psychological support, and not death, is the appropriate response.
There is a myth that use of pain-relieving medication such as morphine shortens life. This promotes the impression that palliative care already promotes euthanasia. This suggestion is untrue and current research suggests that in fact adequate doses of morphine and other pain-relieving medications increase survival. Our community would be less concerned about care at the end of life if they knew more about it. Furthermore, in those places where euthanasia and physician-assisted suicide are legal, pain is not a common reason for requesting these interventions. Psychosocial concerns such as fear of loneliness and fear of the future are more common.
Current government initiatives promoting advance care planning, which is common in palliative care settings, can alleviate many fears for the future for chronically or terminally unwell patients. While many healthy people in the population may believe that they would like to have access to assisted dying at the end of life, the number of people with advanced illness who request it in Australia is very low and even lower—less than 1 per cent—once palliative care is introduced.
Legalisation of assisted dying is dangerous. Patients with advanced illness are known to change their mind about treatment over time. This means that a patient who may request assisted dying at one stage may change his or her mind if given more time, thus ending his or her life prematurely. The bill does not specifically guard against patients with clinical depression from requesting assisted dying. Depression is known to be associated with a desire to die, and is a treatable disease. Research shows that sometimes when a patient has expressed his or her fear at the end of life it has been misinterpreted by the healthcare providers as a request for euthanasia, when it was really intended to be a cry for help. The incidence of depression in cancer patients may also be as high as 45 per cent and this is known to be a problem in other jurisdictions, despite so-called safeguards.
Suicide rates in our community are already a cause of concern. Legislation allowing assisted death promotes the idea that death is an acceptable way to solve problems in life, increases knowledge of suicide techniques and makes an increased amount of lethal substances available within the community. The availability of assisted death as an option for vulnerable patients may be sufficient to cause them to request it even if they do not want it, because they do not want to be a burden on their families. In those jurisdictions or countries where euthanasia and physician-assisted suicide are legal, an extension of legalisation beyond those who do or can consent, who are not terminally ill, or are minors, has followed. Although we do accept that some small number of individuals will want to exert their autonomy—that is, the right to choose the timing and manner of their own death—we believe the role of government is to protect the vulnerable who would be at risk if this bill were passed. This is the conclusion of government-sponsored inquiries into similar euthanasia legislation that have been conducted in the United Kingdom, Canada and United States of America, as well as in Australia.
The other social consequences of legalisation seen in those places where euthanasia is law should be an area of concern for all members of this House. For example, the Netherlands—also called Holland—is one such case. Euthanasia was decriminalised in Holland in 2002 after 20 years of widespread practice under legal guidelines. Euthanasia was initially intended for those terminally ill patients who were mentally competent and experiencing intolerable suffering at the end of life. By the time that law was passed the courts had already legitimised the death of patients who were not terminally ill. Then they allowed it for people whose suffering was not physical. The first example was that of a recently bereaved but otherwise healthy woman. Mentally incompetent patients also started to receive euthanasia, and 12-year-olds to 16-year-olds can, and do, die with parental approval. The Dutch are currently debating the need to allow people over 70 years of age to be killed when they are "tired of life".
Finally, a Dutch hospital published its guidelines on how to kill disabled newborn babies in the New England Journal of Medicine
in 2005—that is what they mean when they talk about a slippery slope. Proponents of euthanasia will tell us that legal guidelines will prevent abuse from happening, but the facts suggest otherwise. The Dutch Government's first euthanasia report was published in 1991. It showed that around one-third of deaths by euthanasia in the previous year had occurred without the patient's knowledge or consent—and I have the resource material to support that. In each Government report since that date it shows that somewhere between 500 and 1,000 euthanasia cases per year are being performed without the clear and explicit request of the patient—that is one of the major objections of the Christian Democratic Party to euthanasia—and all are under the stringent guidelines in place in the Netherlands.
That is the experience of jurisdictions where euthanasia has been legalised. Do not count on your doctor as being a protector of life. Evidence of abuse has been the main reason why governments in many countries have rejected calls to legalise euthanasia. We do not suggest that our current care of the living and dying in our community is perfect. Rather than legalising euthanasia or assisted suicide, the Christian Democratic Party calls on the Government to improve resources for palliative care so that terminally ill patients can have the comfort they need at the end of life to minimise suffering. Patients need access to palliative care, not just awareness that it exists.
Currently many people in Australia have inadequate access to palliative care, including the very old, the very young, patients with a non-cancer diagnosis, private patients, nursing home residents, patients in rural and remote settings, and non-English speaking patients. Government support for those people and for the disabled in our community should be improved so that those who require assistance to do daily activities are able to live a dignified and meaningful life. Our community needs to be educated regarding the benefits of aging well, so that age alone is not seen as a reason to give up on life. The Christian Democratic Party calls on the State Government to affirm the value of every human life. It should not give up on our weaker citizens; it should support them in their most vulnerable moments.
The Christian Democratic Party is concerned about specific aspects of this legislation. Firstly, "terminal illness" is defined as one that will result in the death of the patient. There is no mention of a patient's prognosis in relation to meeting the eligibility criteria. Secondly, while patients are required to have severe pain and suffering and be informed of options, there is no requirement that they be assessed and the options exhausted before proceeding on the assisted-death pathway. Thirdly, the secondary medical practitioner does not have to have specialised knowledge of the disease involved, merely experience of it, and the amount of experience is not defined. Fourthly, the psychiatry review is to assess decision-making capacity only. Clinical depression is known to influence decision-making regarding desire for death and is a treatable illness. This also should be assessed. Fifthly, there are no "medical standards" regarding the killing of patients; therefore, part 2, proposed section 7 (2) of the bill is meaningless.
The Hon. Dr Peter Phelps:
Finally, in jurisdictions where the only reporting of assisted death is through the doctor involved, it has been impossible to keep track of the exact number of cases that are occurring. It has also been impossible to study the motivation for requests in a meaningful way. If the use of such legislation is to be intended to improve the lot of dying and suffering patients, reporting should include information supplied directly by the patient involved before his or her death. The Christian Democratic Party opposes the bill in principle. But the issues to which I have just referred represent serious weaknesses in the legislation and support our contention that the legislation should be opposed. During my contribution I cited a number of statistics from the Netherlands. I have a printout of those resource quotes. Rather than reading this single page of resource quotes onto the record I seek leave to incorporate it in Hansard.
Point of order: Pursuant to numerous rulings by President Johnson, I draw the attention of the House to the fact that it is highly irregular for visitors in the public gallery to take notes of proceedings. Former President Johnson ruled:
The official proceedings are available to the general public in the way of the official record of Parliament. Any members of the public taking notes in the public gallery should desist.
I ask the Deputy-President to confirm that ruling and to inform members of the public gallery of it, as they may not be aware of it.
DEPUTY-PRESIDENT (The Hon. Sarah Mitchell):
Order! The member has taken his point of order under Standing Order No. 197. He is correct: former President Johnson ruled that it is irregular for members of the public gallery to take notes. I ask any member of the public gallery who may be taking notes to desist from doing so. I uphold the point of order.
Reverend the Hon. FRED NILE:
I again seek leave to incorporate this list of resource quotes in Hansard
The Hon. Lynda Voltz:
I am sorry, is Reverend the Hon. Fred Nile seeking to table the list?
Reverend the Hon. FRED NILE:
No, to incorporate it.
DEPUTY-PRESIDENT (The Hon. Sarah Mitchell):
Order! I am informed that there is no rule but the House should consider whether it would like something incorporated in Hansard
that they have not seen. If that is the case, then the House can decide not to grant leave.
The Hon. Rick Colless:
It's either a yes or a no.
The Hon. Lynda Voltz:
That is no. Leave is not granted.
Leave not granted.
Reverend the Hon. FRED NILE:
Do you want me to read it out?
The Hon. Dr Peter Phelps:
If you decide to table it I am sure that will be okay.
The Hon. Lynda Voltz:
Reverend the Hon. Fred Nile can table the document but he wants to incorporate it in Hansard
Reverend the Hon. FRED NILE:
It is only one page.
The Hon. Lynda Voltz:
He can table it, not incorporate it.
Reverend the Hon. FRED NILE:
I seek leave to table the document.
In conclusion, I reiterate our opposition to the bill, which was introduced by The Greens. Without getting into a debate about the ideology of The Greens, they always seem to have great concern about protecting the life of animals, even unborn animals—I do not oppose that—but a lack of concern for the lives of human beings.
The Hon. TREVOR KHAN
[11.30 a.m.]: I will not be supporting the bill, but I do so after a considerable amount of thought. I do not approach this matter from a religious perspective at all; I approach it in circumstances where I have lived with the death of my father for about four years. In all the emails I received—I sought to read as many as possible—I was constantly confronted with the words "palliative care" and, in a sense, how that was the miracle that would save people in their final times. I will tell the House a little about my experience with my father.
My father was a general practitioner in Wollongong and had practised there for more than 50 years. He had such a large practice that even when he was eventually in the nursing home the number of nurses and nurses aides who volunteered that either they or one of their relatives had been delivered by dad was remarkable. I know that one Labor member in this place had some of her children delivered by my father. He had a significant reputation in the Wollongong area. Indeed, I think I could say he was genuinely loved by a large section of the community. He was an interesting man. He was manic, he had a huge work ethic, he was articulate—
The Hon. Dr Peter Phelps:
Like his son.
The Hon. TREVOR KHAN:
There was a DNA flow-on. He was a larger than life character in so many ways. Nevertheless, as with all of us, he grew old and eventually retired—I think in his 80s. When he began to develop some symptoms he went to an oncologist in due course and they identified a mass in his chest. The oncologist's view was that this was not the primary cancer. To cut a long story short, he was sent to Wollongong Hospital—a hospital in which he had practised for years and in which there can be no question of anyone having done anything wrong in the care that he received. They took him off all his medications so that he could have a colonoscopy because they believed that may have found the primary source. He was due to have the colonoscopy on a Monday morning and was woken at 7.00 a.m.
He had suffered the most tragic of strokes. From that moment he was left incapable of walking or using one side of his body, incontinent with no control of his bowels or bladder and mentally debilitated to a significant extent. At that stage he was still able to talk: he could string a little sentence together but no more. He was not the same man in any way. We were told that he could live maybe for days or weeks. In those days they did not talk about months. At that stage he could not swallow and they were talking about inserting a tube so they could feed him. At that time we knew that if that happened he was gone. Once a person is intubated and the like it is too hard.
Nevertheless, starting from that very Monday my mother was there with him every day trying to help him. She was with him until he died more than 3½ years later. She was there every day apart from five days, four of which were because she was locked out of the nursing home because of infection. I would try to visit at least once a fortnight. Going into a nursing home is an interesting experience. When I would approach his room often the first thing I would prepare myself for was the pervasive smell of faeces. This man had held a significant position in his community: he was proud and intelligent. And there he lay, even with the help of the nursing home, unable to speak by the end. He would look straight through me. He did not really speak to me at all. I never quite knew whether it was because he had difficulty speaking, because he was angry with me or because he could not articulate what he was thinking. I did not know what he was thinking.
He lay there for more than 3½ years in his own faeces and urine. Palliative care? In fact, he was assessed by palliative care, which said he did not fit within the criteria. I was left staggered and feeling humiliated for him. The patients would continue to visit; his friends would continue to visit, but as time went by they drifted away. The only person who was there every day was my mother: feeding him, trying to humour him, trying to make his life just that little bit better. There was no dignity in that for him. In a sense there was no relief from the suffering. He was not experiencing pain. I hear people talk about palliative care and pain. Many people in our community do not suffer pain in their end stage of life; they suffer the debilitating impact of disease in so many other ways.
As with the emails, I simply wonder about people's insight into the process of death and how terribly demanding it is on the individual involved and those around them. As I said, I come here with a lot of baggage in terms of this debate. I come here believing that no-one deserves to end their life like that. No-one on this planet deserves, after dedicating their life to medicine, to be lying in a bed like that. Before my father lost the capacity for intelligent speech, before the operation, he had prepared an advance care directive. He knew that he had cancer and that his life was going to end. He had lived with death his whole life. He had seen his friends die. He cared for his friends as they died. He prepared an advance care directive that said, "If I've got cancer that is extensive in my bowel then make sure there is no blockage and put me back together." He was not looking for a miracle outcome; he knew his life would end.
In those early times in the nursing home when he could still speak I know he approached my sister and told her that he wanted to die. And he approached me and asked me whether I would kill him. And I could not. To this day I wonder, when he looked at me, whether he felt that I let him down, whether by letting him live like that for 3½ years all I did was leave him in agony. There are no simple ways out of this. Life is terribly cruel, I have decided. It can come and kick you in the guts, and there is no way that some people can be spared that outcome. There are no simple ways out of this. Life is terribly cruel, I have decided. It can come and kick you in the guts, and there is no way that some people can be spared that outcome.
In those circumstances, having looked at this bill and having agonised over what I should do as a human being, I understand what the Hon. Cate Faehrmann wants to do. I understand what so many people who wrote to me want, and I understand why they want it—I really understand why—but I cannot provide an answer that cures people from the suffering of life and death. I feel that the bill goes too far. It asks for a medical practitioner, in one sense, to kill a person. I just cannot see that as being a good outcome in our community. I could not see that it would have been appropriate for dad, in his role as a doctor, to have killed one of his patients, however much their suffering was.
I have some sympathy for the right of people to make their own decisions in life and death. That is a different question. I feel that this bill, in a sense, conflates two different issues and makes it difficult. A professor down the road from where we lived when I was growing up in Wollongong took his own life because he had a brain cancer. He was a very intelligent, articulate professor, and he did it by gassing himself in his car. I cannot accept that as a way to go—alone in a car, gassing yourself through a piece of pipe. I think there has to be something better than that. But, again, this bill conflates the issues, and I cannot feel comfortable with it.
Notwithstanding my inability to support the bill, the debate we are having now is an important debate for all of us. It is important for all of us at some stage to consider the issue of death—not in the context of those final times when we are getting close to it but now, whilst we are still healthy. How do we want our end to be? In my view it is wrong to say that there is some preordained outcome for us. There is capacity for us to influence. I have spoken of this matter with various people. It is one thing that dad did, although he did not go far enough. He only dealt with the operation in his advance care directive; he did not deal with what he expected when he lost the capacity for input himself.
I have no doubt, had he gone into that area, he would have said, "Do not give me my diabetic medication, do not give me the blood thinners and do not give me the antibiotics so that when I am lying in bed in an unconscious or semi-conscious state you keep me alive for another 12 months, 18 months or two years." He would have said that was ridiculous. One of the problems for us is that we do not make advance care directives. It was too much for mum. I could not really expect my mother to say, "Take him off all of his medication", because she loved him. She loved him until the day he died, and he died with her there. It was his decision to make and, unfortunately, he did not make it.
The bill, in a sense, starts at the wrong point. It starts with a regrettable, discrete class of people diagnosed with a terminal illness. It does not deal with many of the people I saw come and go in that nursing home. The beds would be full and then they would be empty. They were filled with people with dementia who would wander the halls. I remember one lady who would wander into dad's room and ask where her daughter was. She asked each day until she died where her daughter was. She was there alone, in a demented state. There was another wing that I could not get into where violent dementia patients were. They were kept in another wing of the hospital. Dignified? Not at all, but they were there. If they had a choice earlier, no doubt they would have said something about their level of medication usage, for instance. If people were encouraged to do that I think there would be different outcomes and perhaps better outcomes.
There is no dignity in death. There are no simple answers to any of these problems. This is a debate worth having. It is worthwhile considering what we should do for people in the end stages of their lives, but regrettably this bill does not do that. Because of my experience I cannot support the bill. However, again because of my own experience, I will not vote against the bill; I will abstain. I am sorry if my personal experience has been a little too much, but thank you.
The Hon. LYNDA VOLTZ
[11.45 a.m.]: I support this legislation. Harper Lee once wrote:
Before I can live with other folks I've got to live with myself. The one thing that doesn't abide by majority rule is a person's conscience.
That is why we have conscience votes on these issues. I would like to share two stories with members. The first is from one of the many thousands of emails we have received, and we have received a lot for and a lot against, but at the end of the day members in this Chamber will make up their minds based on their own conscience. The story of Gideon Cordover particularly moved me. This is his story:
My father, Robert Cordover, was suffering from Motor Neurone Disease, a terminal illness, when he took his own life on June 22, 2009. I was 19 years old. Robert did not want a lingering death and figured he had to act early whilst he still had the mobility to die alone, before the impending total paralysis. Had assisted dying been legal my father could have survived for weeks or months longer. I would have done anything to have had just a bit more time with him. That is why I write to you now.
Robert was fully informed about his palliative alternatives (withdrawal of treatment, medical dehydration, induced coma). The average life expectancy for sufferers of this disease is less than three years. No one in history has ever recovered. A scientist, my dad knew the odds of him being the first. His mother had died from the same illness and he knew what to expect.
Robert was a man who had loved his life and was not prepared to suffer needlessly or waste away slowly without any of the quality he once enjoyed. He felt ready and I respect his decision. The law did not.
I am heartbroken that in order to protect his family from being implicated in his death and prosecuted, he took steps to die early. I feel upset that no-one would listen or respect his rational request to die on his own terms. He should have had more options rather than being condemned to select from the Hobson's Choice of a lonely suicide or a drawn-out, undignified death.
Robert's physical pain was unbearable. Fasciculation, involuntary muscle spasms like never-ending pins and needles all over, kept him awake and since the valve between his oesophagus and windpipe was faulty he could not eat or drink without choking. He was fluent in half a dozen languages but could no longer speak at all. He was once an intervarsity wrestler and had worked outdoors all over the world as a marine biologist but now he was weak and hungry and breathless. He loved the reef and taught us all to snorkel from an early age, so together as a family we went to the Great Barrier Reef for one last hurrah but he could not join us in the water. He had to sit on the boat.
He could barely use his arms anymore. Each day was getting worse, more difficult, more frustrating. The "natural" death he had to look forward to was suffocating on his own saliva after a prolonged period of being trapped inside a functionless body, his mind still racing. He described the ordeal as torture. Unrelenting torture. And for all our best efforts, he still was having no fun.
Physical pain is actually not the contingent factor for many sufferers' rational requests to die. Existential suffering is often more profound.
I remember once, in the early stages of his illness, helping dad tie his shoes. I thanked him for letting me help him. I said that I appreciated this opportunity to care for him as he once cared for me. I remember him tying my shoes as a child. I was pleased to be able to reciprocate that kindness, patience and tenderness that he showed me. He smiled, a sad, hollow smile.
Later he scribbled on his notepad "It might be okay for you, but it is not okay for me."
For more than six decades, Robert had cleaned, toileted and tidied himself. He was a fast-moving, fast-talking, loud-laughing, towering pillar of strength and self-sufficiency. He was brave and dynamic and rich with stories and good memories. And this disease took it all away from him.
We could have turned him in bed and stroked his hair as we fed him. We could have laughed with each other by his bedside or told him stories about our pursuits for days, weeks, months or years into the illness but that was not what he wanted. That kind of palliative care was not enough. He wanted to be able to engage. And once he could no longer, he was satisfied enough to call it a day.
On Robert's journey towards his inevitably difficult death, he was turned away by many doctors who were unwilling, for fear of prosecution or bad reputation, to even talk about end-of-life options. Concomitantly, his suicide was risky. It lacked any medical mediation and so anything could have gone wrong. Many people turn to more violent, ultimately traumatising, methods.
The majority of the five elderly Australians that suicide each week achieve their desired result by hanging. Rope from a hardware store is accessible and cheap. For the terminally ill, getting balanced, honest information from a doctor is not so easy.
However, once Robert had the life-ending medication in his possession his mood entirely shifted. He became much more positive and productive; like a great weight had been lifted. He had peace of mind. After nearly sixteen years researching the effects of the Death with Dignity Act, the Oregon Health Authority supports my anecdote. There, more than one third of people prescribed life-ending medication do not use it.
Robert's suicide went unreported but in hindsight it was illegal because he was assisted by a sympathetic doctor. Had he instead hanged himself, jumped off a cliff or shot himself then his actions would have remained within the letter of the law. The fact that he was given access to a painless, life-ending drug was the problem according to the current, broken, system.
The other story I wish to tell is that of someone who many members in this Chamber may know, my research officer, Saskia Mulder. This is Saskia's story:
My father had pancreatic cancer and passed away in 2005 in the family home in the Netherlands. He had euthanasia after suffering from a range of cancers that had spread through, and racked his body over a period of many years.
Euthanasia in the Netherlands is regulated by the "Termination of Life on Request and Assisted Suicide (Review Procedures) Act" 2002 which states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care.
These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the presence of reasonable alternatives, consultation of another physician and the applied method of ending life.
As we anxiously gathered around him in his last days trying to make him as comfortable as possible, we knew he was in pain and ….well I have to say that he looked like a concentration camp survivor. He was always a tall, well built man, but suffering from the last throes of cancer, he was reduced to a bundle of bones, undignified in his deteriorated physical state, teeth protruding in a grimace of impending death.
Both my parents decided many years beforehand that they would opt for euthanasia. My mother is Australian and also had the luxury of being able to do so legally as she has lived in Holland for over 40 years. She is now 86 and is a staunch supporter of euthanasia.
As his daughter, what really stood out for me in the process was the time it took before consent was given by the Dr, other specialists and required witnesses to the case before he was given euthanasia.
In short it was really left to the very end before our family Dr administered the lethal dose of sedative sodium thiopental intravenously to induce a coma and then Pancuronium to stop my father breathing and pass away.
Contrary to the stereotypical image of euthanasia being easy to request and administer, it is not at all like this in the Netherlands. A patient is required to ask for the procedure specifically and be the victim of unbearable suffering—having an incurable disease, for example—or of hopeless psychological problems.
All cases of euthanasia have to be registered with special review committees. And the procedure is only allowed if the doctor has fulfilled the legal requirements.
Children have no authority whatsoever concerning the ending of their parents' lives. One can only ask for one's own euthanasia when you are of sound mind, and have more than once let it be known that you do not wish to continue living under certain circumstances. The request has to be made verbally and in writing to a doctor who has a professional relationship to the patient, like our family doctor had with my father.
It also has to be proven that it's a case of hopeless suffering, so someone suffering from dementia can no longer request euthanasia since he or she is no longer of sound mind.
People can make a living will requesting euthanasia in certain circumstances before they become demented and this is what both my parents did.
From my personal, and devastating experience of seeing my father die at a set time on a set date at his request, I can only say that euthanasia in the Netherlands is highly regulated and a last resort procedure.
However, as a family we all believe that is a necessary and fundamentally humane right and process for those who are terminally ill and suffering, to be able to request their right to die under these circumstances.
My mother will be next in line, and she just as her children—my brother and I—are so very grateful that she lives in a country that respects people's right to die.
In New South Wales Saskia's story would not be one that we are hearing because it is currently illegal under the Act for euthanasia and a physician-assisted suicide to be undertaken. Also, under the current legislation, a survivor of a suicide pact can be prosecuted for a period of up to 10 years. The reality is that this bill deals only with the terminally ill. It deals only with those who are dying anyway. It is not a bill that will allow children, people with dementia—or a whole range of other scenarios that have been put forward—to end their life. It is specifically for those dying from a terminal illness.
I have just had the experience of my good friend Paul O'Grady suffering from a very severe form of cancer. He was extremely emaciated and, I believed, was on the verge of dying. But under the legislation Cate Faehrmann has put forward Paul O'Grady would not be able to receive euthanasia because there were still treatments available to him that could save his life. This bill specifically says that. If there are treatments available they should be used. It is only when a person is dying from a terminal illness and in horrendous pain that this bill, if it became an Act, could be used. It applies only to the terminally ill and to adults and to those who request it. It cannot be used by anyone else.
I had a problem with the original legislation that Cate Faehrmann showed me last year, because it required two medical doctors to sign off. I did not like that legislation. Like other members in this Chamber, I have a concern that particularly women—there is some evidence to this effect—do not like to be a burden to their family. That is an issue. I am glad that this bill requires an independent qualified psychiatrist to sign off. That was one of the benchmarks for my support for the bill. If the primary medical practitioner considers it necessary an independent qualified social worker can also examine the patient. It is important that it is not just a medical practitioner or two medical practitioners who are signing off on it. It is very important that a psychiatrist should sign off on a person's request so they can determine their reasons for doing it are based on the fact that they are terminally ill and in severe and unbearable pain.
It is inhumane to make people suffer who are dying and in extreme agony. Gideon's case is one in which he could see the inevitability of what would happen to his father and the stress and strain that that placed on his children. I point out another matter to members. The point was raised about people choosing to exercise their rights under this bill. Passing this bill will actually prolong people's lives. It will mean that people will have the comfort of knowing that at the appropriate time, when they can no longer stand the pain and they are going to die, they will have the option of going in a peaceful and dignified way, as opposed to what we know happens at the moment. People take their own lives, isolated from their families and away from anyone else, sometimes unsuccessfully, which causes more problems. Children and families miss out on saying goodbye simply because of the way our legislation is written.
Some people do not believe in taking life, and that is fair enough; it comes down to one's conscience. The right to end one's life in a humane and dignified way should not be taken away because of religious beliefs or a belief about the way in which society should operate. People's views and opinions should be respected. That is what living in a secular democracy is all about: respecting the views and rights of all. Some people will be disappointed that I support this bill. I have had thousands of emails from people such as Stephen Camilleri who want me to oppose it. I understand and respect their right to raise those concerns. However, I could not live with myself if I did not support the rights of those who desperately want to die with dignity.
The Hon. MELINDA PAVEY
(Parliamentary Secretary) [11.59 a.m.]: At the outset, I state that I will not be supporting the Rights of the Terminally Ill Bill 2013, which has been introduced by the Hon. Cate Faehrmann. I thank the Hon. Cate Faehrmann for raising this issue in a wider community context. I do not agree with the way it has been raised and the unilateral approach that has been taken, but it is a vital and important conversation we should have as a community and a society. I thank the members who have contributed to this debate. I particularly acknowledge the moving speech delivered by the Hon. Trevor Khan. He bared his soul before us all when he told his family story. The message from his story is that life is cruel and complicated. But I believe there can be dignity in death. I have witnessed dignity in death. This is the wider conversation that must be had. Our dying is an important conversation to be had with family so that we can advise family members of our wishes.
I acknowledge the many letters and emails that I have received on this issue. I have been immensely moved by the stories which highlight the challenges we all face in caring for our loved ones at the end of life. Euthanasia or voluntary-assisted suicide has been the subject of much moral, religious, philosophical, legal and human rights debate in Australia. At the core of this debate is how to reconcile competing values: the desire of individuals who, at a time of suffering, choose to die with dignity, and the need to uphold the inherent right to life of every person. Several legislative attempts have been made to legalise euthanasia in this country. However, at present, it remains unlawful, and I am of the opinion that it should remain so.
I find it curious that many articles relating to the rights of the terminally ill often quote reports that claim that the majority of Australians state in opinion polls that they would like voluntary euthanasia legalised. Yet a recent survey conducted by Palliative Care Australia reported that the majority of Australians have not even discussed dying with their loved ones. To me, therein lies the issue. There is no escaping the fact that we will all die and everyone deserves quality care at that time. As my good friend Dr Stephen Flecknoe-Brown states, "A good death is what most of us want and would wish for ourselves and our loved ones." I believe what Australians are saying is that they fear their choices or those of their loved ones will be stripped away at the end of their lives. They fear they will be subject to interventions they would not want and be made to suffer unnecessarily. It is a modern dilemma that people are afraid not only of sickness and death but of the possibility that extra suffering will be imposed on them by the medical system and the advances that have been made in medicine.
In the late 1990s a qualitative study in Canada identified five things that people want when they approach the end of life: to avoid suffering; to avoid the prolongation of dying; to achieve a sense of control; to relieve burdens on love ones; and to strengthen relationships with loved ones. Australians are living longer than they did a century ago as a result of improvements in public health and advances in medicine increasing life expectancy. Between 2006 and 2016 the number of people aged over 85 is expected to increase by more than 86 per cent. Historically, infectious diseases and accidents led to death. Now it is stroke, cancer and heart disease.
The capacity for modern medicine to cure many diseases has changed our attitude to sickness and illness. A century ago most people who were ill were cared for by their family at home where they died. Many homes had a mourning room where a body was laid out. Nowadays, seriously ill people are treated in hospital and fewer people die at home. Thus the community now has little direct experience of caring for those who are ill or dying, which has resulted in fewer discussions around death and dying within communities and families. Dying has become medicalised in recent decades with two-thirds of patients who are dying in hospital still undergoing treatment that may be considered futile. One in 10 Australians die in an intensive care unit; in the United States it is one in five. In an article by Leadbeater and Garber it is stated:
This type of death can mean that people die badly in places not of our choosing, with services that are often impersonal, in systems that are unyielding, struggling to find meaning in death because we are cut off from the relationships that count most to us.
Dr William Silvester, an intensive care specialist and Director of Respecting People's Choices at Austin Health in Melbourne, realised the need to change the way patients are managed in hospitals and questioned whether aggressive medical intervention was always the right way to proceed. Each year we learn more about how to extend life and improve the quality of our life as we grow older. Inevitably, however, death will come. By listening to patients and respecting their wishes, Dr Silvester and others like him are doing what they can to ensure that medical technology does not overpower the people it was designed to help. We are not comfortable talking about death. Even so, most people would want to have a say about their medical treatment during their dying days. In order for our choices to be respected, we need to find the courage to talk to the people closest to us about the kind of care we want before it is too late.
For their part, the clinicians need to be mindful of their patients' wishes. It is still the case that unwanted interventions prolong the lives of the terminally ill, adding to their distress and the distress of those who love them. Dr Silvester says everyone has the right to refuse treatment. Many cancer patients unwillingly undergo surgery and chemotherapy knowing the exorbitant cost of such treatments because they want to have the chance to extend their life. Not everyone wants to keep receiving these treatments indefinitely. Saying no to medical intervention is not the same as euthanasia, but it does give people choices such as the choice to die at home instead of in an intensive care unit. Advance care plans allow people to make choices about possible future treatments so that their death can be transformed from a series of desperate medical interventions into a peaceful and dignified process.
Dr Flecknoe-Brown is a strong advocate of advance care directives and would like to see these promoted more by the medical and legal professions as a means of providing people with a mechanism that clearly states what they do or do not want. It is up to us as a community to incorporate advance care directives in our wills. If our life circumstances change, the advance care directive can be amended to reflect the changed circumstances. Advanced care plans are about promoting the best quality of death. Advance care plans or directives respect a patient's choices by clearly outlining their wishes with regard to medical treatments they consent to or wish to refuse as well as their preference for future care in the event of incapacity. Advanced care plans are supported by the ethical principles of autonomy, including informed consent, non-maleficence—that is, do no harm—and dignity, including the prevention of suffering.
A recent randomised control trial investigating the impact of an advanced care plan on the end of life in elderly patients concluded that they improve end-of-life care and patient and family satisfaction and reduced anxiety, stress and depression in surviving relatives. The Amaranth Foundation was founded in 2009 and is based in country New South Wales at Corowa. The purpose of the foundation is to provide support and assistance to people with serious and advanced life-limiting diseases who live in rural communities.
The foundation has developed a partnership with Respecting Patients Choices to provide resources to patients, their families and caregivers to assist with advanced care planning. Importantly, they have also been working with the Ambulance Service of New South Wales to provide better palliative management for patients living in rural and regional areas. If an ambulance is called, patients may not necessarily be taken to hospital because the paramedics may be able to settle them rather than remove them from their home. The Respecting Patients Choices authorised care plan provides a framework to support paramedic decision-making in meeting the needs of individual patients with specific medical conditions and to respect wishes about palliative care when an ambulance responds where an authorised care plan is in place.
I have had the good fortune to spend time with Brynnie Goodwill, the chief executive officer of LifeCircle Australia, who is a passionate advocate for people who wish to die at home. Statistics indicate that 70 per cent of Australians want to die at home, but barely 30 per cent do so. LifeCircle's vision is to help Australians live richer lives with support for those affected by potentially terminal illness or at life's end, to help with access to family and community services and to assist people who wish to die at home. Charles Waterstreet, an enthusiastic LifeCircle Australia supporter, states:
LifeCircle's ambitions are to give all the care, comfort and common love we have at birth to the dying person, to reflect the journey that person has had in life and to ensure, as far as possible, that we can die with dignity, care and compassion.
He further states:
Pain management and palliative care can be transported in many cases. We are surrounded by at least one member of our family at birth— completely surrounded until our actual birth. The same can be true if we face death as a reality—something not to be feared, but faced—and we can ensure the soul departs the body in the least painful, least melancholy manner.
Bringing our dying home and creating a community at the end of life is a mantra that LifeCircle, the Cancer Council NSW and many others espouse. It is based on a belief that it takes a community of people working together to enable someone to experience dying and death at home with dignity, with their wishes respected and surrounded by family and friends. I recently met with retired palliative care specialist Yvonne McMaster in Coffs Harbour. I am pleased to say that the mid North Coast has one of the best palliative care teams in regional New South Wales.
Over the past five years I have lost my uncle and a very close family friend to cancer. They were both in their eighties and made the brave decision not to be treated; they wanted to stay at home and be surrounded by family and friends. Their wishes were respected and supported and their families were supported, and as a result they were able to die at home with no regrets and surrounded by love and care. That is why I say that people can die with dignity. I accept that that is not true for everyone and that it is a complicated issue. I cannot support this bill, but it is worthwhile and important to discuss this confronting topic. The more we confront it, the more likely it will be that good decisions will be made when people come to the end of their life.
The Hon. JEREMY BUCKINGHAM
[12.13 p.m.]: I thank the Hon. Cate Faehrmann for introducing this important and excellent bill, which I strongly support. As a massive bleeding heart, I will try to get through this speech without tearing up. The Rights of the Terminally Bill 2013 is extremely important to me and to everyone else in this State. I will quote from a book that had an enormous impact on me as a young man. The book, which made me contemplate my end, is The Death of Ivan Ilych
and it was written by Leo Tolstoy. It is a rugged read and a tough book about the death of a man before his time, how he dealt with it and how he was treated by his family and friends. The following passage had an enormous impact on me:
Morning or night, Friday or Sunday, made no difference, everything was the same: the gnawing, excruciating, incessant pain; that awareness of life irrevocably passing but not yet gone; that dreadful, loathsome death, the only reality, relentlessly closing in on him; and that same endless lie. What did days, weeks, or hours matter?
Before I entered this place I worked in the funeral industry. I was a stonemason and I had many discussions with people about their death or the death of a loved one. I heard numerous horror stories about disadvantaged people in rural New South Wales and the Central West who in a final act of stoicism had ended their life to avoid suffering or being a burden to their loved ones. Like everyone else in the industry who dealt with death routinely, I saw many people suffering. We all agreed that a good death would involve choosing the time and place.
This bill is extremely important and I am very proud to be participating in this debate. It has not come about in a vacuum; it has come about in response to community calls for law reform in this area over many years. The issue was recently addressed at a roundtable meeting in Brisbane in January. As a result of that meeting, Australia21—an organisation of esteemed medical practitioners—has recently delivered a report on voluntary euthanasia in Australia. Australia21 is an independent, non-profit organisation whose core purpose is multidisciplinary research and inquiry into issues of strategic importance to Australia in the twenty-first century.
The organisation's latest report, which is entitled "The Right to Choose an Assisted Death: Time for Legislation", sets out the background of voluntary euthanasia in Australia. It states that despite the fact that voluntary euthanasia and assisted suicide are now unlawful, both activities nevertheless occur not infrequently in Australia, in part because palliative care cannot relieve physical and psychological pain and suffering in all cases. In this respect, the law is deficient. The law is also unfair because it does not treat people equally. Some people can be helped to die on their own terms as a result of their knowledge and/or connections or economic circumstances and some are able to hasten their death by the refusal of life-sustaining treatment. However, others do not have access to the means to end their life. A substantial majority of Australians have repeatedly expressed in public opinion polls their desire for law reform in this area. Many are concerned about what they see happening to their loved ones as they reach the end of their lives and want the confidence that when their time comes they will be able to exercise choice in relation to assisted dying.
The most consistent reason advanced not to change the law is the need to protect the vulnerable. There is a concern that if the law allows voluntary euthanasia and assisted suicide for some people it will be expanded and abused, including pressures being placed on highly dependent people and those with disabilities to agree to euthanasia. However, there is now a large body of experience in a number of international jurisdictions following the introduction of legalisation dealing with voluntary euthanasia and/or assisted suicide which demonstrates that appropriate safeguards can be implemented to protect vulnerable people and to prevent the abuse that opponents of assisted dying have feared. I believe that those safeguards are contained in this bill.
The research reveals that assisted dying meets a real need among a small minority of people at the end of their lives. It also provides reassurance to people with terminal and incurable diseases that they will not be left to suffer the indignities and discomfort of an awful death. The strong opposition to assisted death by religious groups, which is based on their belief in divine sanctity of all human life, is not a justification for denying choice to those who do not share that belief. The closing comments in the Executive Summary of Australia21 are:
It is now time for Australian legislators to respond to this concern and this experience by legislating to enhance the quality of death for those Australians who seek assisted dying.
For this reason Australia21 makes 3 key recommendations that:
1. State governments should develop legislation now to permit and regulate voluntary euthanasia and assisted suicide in defined and limited circumstances;
2. The Federal Parliament should restore powers that were withdrawn from the Territories so these parliaments may do the same; and
3. Until the above happens, each Member of Parliament should consider exercising his or her right to introduce a private member's bill on voluntary euthanasia and assisted suicide.
This is what the Hon. Cate Faehrmann from The Greens has done, and I commend her for bringing this very important legislation before the House. What does the Rights of the Terminally Ill Bill do to assist the terminally ill and to ensure the necessary safeguards are in place to protect patients and practitioners? The bill will ensure that a patient who has a terminal illness and who is experiencing unacceptable pain or suffering can receive assistance to end their life, if that is their wish. This assistance would take the form of the provision of a substance which the patient would administer themselves or in the case of severe physical disability be provided assistance to administer. To receive assistance, patients must meet strict criteria. The patient would need to be at least 18 years old, to be suffering from a terminal illness that is causing severe pain or distress unacceptable to the patient, to be fully mentally capable and able to make informed decisions, to be a resident of New South Wales, and to have been fully informed of the diagnosis and prognosis of their disease and other options, including palliative care.
The process would involve a number of stringent safeguards, including that the patient would have to be examined by two medical practitioners who would certify that the patient met the eligibility criteria. A psychiatrist would have to certify the patient was able to make an informed decision and was not under any duress to make the request for assisted dying. A qualified social worker may also be consulted during this assessment. It would be a requirement that none of the health professionals involved or their close associates stood to receive any financial benefit from the patient's death. There would be severe criminal penalties for coercion of the patient or any of the doctors by another party. The patient can change his or her mind at any stage of the process. No health professionals would be compelled to participate in an assisted dying process. A review process would be established to oversee the process and to ensure compliance. This body can provide reports to Parliament. The drugs used in the assisted dying process will be subject to strict storage and supply rules.
It is worth addressing the concerns of some stakeholders who incorrectly equate voluntary euthanasia as confrontational to palliative care. This is not borne out in the examples from other countries where voluntary euthanasia has been legalised. In jurisdictions where voluntary assisted dying has been available for some time, such as the Netherlands, Belgium and Oregon, palliative care and other end-of-life choices have actually grown substantially since the introduction of the laws. Legalised voluntary euthanasia has not opened the floodgates to physician-assisted suicide. To illustrate, voluntary euthanasia and physician-assisted suicide have only accounted for approximately 2 to 3 per cent of all deaths in the Netherlands and less in Belgium since the laws were introduced in 2002. Many investigations attribute the development of better palliative care to the availability of voluntary euthanasia and physician-assisted suicide. Essentially, it has forced the health sector to improve its services and quality of end-of-life care.
It is widely recognised among practitioners and by bodies such as the Australian Medical Association and Palliative Care NSW that palliative care is unable to provide satisfactory relief from suffering in all instances. Although the extent of this is unclear, it has been estimated to be approximately 5 per cent to 10 per cent of patients who do not benefit from palliative care. I certainly hope that I am not in that 5 per cent to 10 per cent category. This demonstrates that voluntary-assisted dying and palliative care are not mutually exclusive and can co-exist as end-of-life choices. All members have received an overwhelming number of emails in the past few weeks in relation to this legislation from both sides of the debate. I want to read a letter from James McKay, a fellow resident of Orange, who has been outspoken on this issue. He states:
Dear members of the Legislative Council
Thank you very much for taking the time to read my letter, my name is James McKay. I am 46 years old. For the past 12 years I have worked as a nurse in general, psychiatric and palliative care. In August 2012, I was diagnosed with Motor Neurone Disease. One month later my sister, who is 38, was also diagnosed. The last 12 months have provided a lot of information about our family history and the fact that we are 20 of the 50 families in Australia that Motor Neurone Disease is genetic.
Because two people with the C9 0RF 72 gene met and married on my paternal Grandmother's side, this created a bi-folded mutated gene, which my neurologist told me basically, if you've got it you get it. My Father was one of six brothers. He and four of his brothers died of this disease; the one remaining brother has had it for two years.
At the start of June 1991 I applied for and was granted a 4-week early discharge from the Army so I could go home and help my Mother. I was shocked when I saw my Dad, how much he had deteriorated. He had been unable to work for two years. Mum had been caring for Dad, raising three children and working full-time.
So she could have a rest, I talked Mum into putting Dad into Gladstone Hospital for respite care. After some difficulty we got Dad into the car and took him to hospital. It was Gladstone show day, so after taking Dad to hospital, we took the kids to the show. That afternoon when we got home, there was an urgent call from the hospital to come immediately. I went to the hospital with Mum; a Doctor took us into a room and informed us Dad had died. After we had left in the morning, one of the nurse's had helped Dad into a comfy chair and she was placing his feet on a stool when he died of heart failure. Dad was 6'2" and 36 kg when he died.
We thanked the Doctor and staff. We were sad, but also relieved that Dad was no longer suffering. There had been moments before Dad died where he was quite lucid and he would say: he did not want to be like this.
I have no desire to go through what my father had to endure. I have no wish to put my friends and family through this. Recently I gave an interview to the Central Western Daily about my desire to die with dignity. My brother wrote the following comment:
"I fully support my brother in his choice, it is a terrible disease having seen our mother look after our father when he had the disease. I want this to be on the national agenda and when it is time I would like to choose to die with dignity as well".
Unfortunately in Australia, there are currently no measures in place to prevent such an awful death. At this stage MND has no cure and there have been over 70 failed clinical drug trials to date. It would be comforting to know there was a way to control how this disease will progress. I was scared that I would be forced down the same path, so I have joined the Swiss Organisation Dignitas, it will cost me $23,000.00 Australian to access their service. I take a strong interest in what is said in NSW about Euthanasia and the right of every person with a terminal incurable disease to have a humane, compassionate end of life.
Thank you for your time
Those enormously profound words guide me in my judgement on this matter. I commend the bill to the House.
The Hon. MATTHEW MASON-COX
(Parliamentary Secretary) [12.30 p.m.]: I rise to speak on the Rights of the Terminally Ill Bill 2013 introduced by the Hon. Cate Faehrmann. Over the last months, and more so in the last weeks, I, like all members, have received a plethora of correspondence and articles from various groups and individuals on the issue of euthanasia—both for and against. It is apparent, and hardly surprising, that many people and groups hold strong and mutually exclusive views on the general issue of euthanasia and the specific remit of this bill. Often these views arise from personal experiences and circumstances, and I respectfully acknowledge those experiences and circumstances here today. I too have personal experience of people close to me dying from a terminal illness, and those experiences naturally inform my views. The bill seeks to provide, and reflects, a philosophical belief in a type of utopian-like regulated perfection. The sponsor of this bill asserted in her second reading speech:
… the bill proposes a highly controlled and regulated system that would be impossible to circumvent.
"Impossible" is a high threshold, and one that portrays a lack of appreciation of reality. Whilst aspiring to improve the human condition is laudable, death is not, and can never be, a perfect event. As humans we cannot make it perfect; as legislators we cannot, through words in a statute, make it perfect, no matter how hard we might try. In her second reading speech the sponsor of the bill stated:
We know how strongly people feel about this issue on both sides of the debate, but feelings and convictions alone are not good bases for important decisions on law reform. I say to those with strong views against assisted dying laws, to the church leaders who oppose this and actively campaign against it, please do not stand in the way of those who are seeking the right to die with dignity. Please have the humanity and decency to step out of the way.
That passage is redolent with an attitude that there are those whose feelings and convictions are right and legitimate—that is, they conform to the mover's views—and those whose feelings and convictions are wrong, illegitimate and irrelevant, to the point where those ill-informed people should just get out of the way of the righteous ones. In her second reading speech the Hon. Cate Faehrmann also referred to a 2011 newspoll in which the question was asked:
If a hopelessly ill patient experiencing unbelievable suffering with absolutely no chance of recovering asks for a lethal dose, should a doctor be allowed to give a lethal dose or not?
Unsurprisingly, given the highly emotive rhetoric of the question, many people, in an expression of compassion, answered yes. Indeed, in our culture, the natural process of dying, and ultimately death, is not a subject we spend much time speaking about and to many it is taboo—this really needs to change. Instead, our culture surrounds us with images of the pleasures of life, urging instant self-gratification whilst continually reassuring us of our inalienable right to a long, happy life. Perfection is the goal to which we are meant to strive whilst the prospect of suffering, let alone unbelievable suffering, must be avoided at all costs. But, as we all know, the reality is somewhat different.
We have become accustomed to this left wing progressive mantra from The Greens in this place, as they stridently seek to mould a perfect society in their own image. The use of emotive language is a critical tool in this covert campaign. They have reduced this complex area of end of life care to an image of an acutely suffering individual crying out for our compassion and our shared humanity and decency to allow them their right to die. The potential consequences of such a law on the right of us all to live a quality, dignified life, particularly our most vulnerable citizens, is not entertained. Nor is there a serious discussion of the State's overarching responsibility to make laws for the protection and welfare of all its citizens. That is why this bill has been cleverly named the Rights of the Terminally Ill Bill rather than the "State Sanctioned Assisted Murder Bill", when the latter is really what is being contemplated here.
Words are powerful allies in this complex debate. As legislators we know that the expression of a proposed legal right to die is not to be found in the emotive words used in a newspoll question; it is to be found in the words used in the bill. Unsurprisingly, the expressions "hopelessly ill patient" and "experiencing unbelievable suffering" do not appear anywhere in this bill. Whilst the rhetoric used in a public debate may serve legitimate purposes, in the final analysis it is to the actual words of the bill that careful and precise attention must be given, as it is these words which will become law, not the rhetoric however well intentioned. It is the very words of the bill which reveal the insurmountable difficulties in trying to regulate perfection in death.
Clause 3 of the bill defines "illness" as including injury or degeneration of mental or physical faculties. At the very outset one is struck by, and confronted with, a fundamental definition that is expressly not definitive—that is hardly an encouraging start. The same clause defines "terminal illness" as meaning an illness which in reasonable medical judgement will in the normal course result in the death of the patient. But what constitutes reasonable medical judgement? Is it that of the euthanasia supporting medical practitioner or medical group? Presumably, it is not that of the non-euthanasia supporting medical practitioner or medical group.
Clause 4 of the bill provides for the right of a patient with a terminal illness to seek assistance to end his or her life. However, there is no express and direct nexus in this fundamental clause between the terminal illness and unacceptable pain, suffering or distress—that is, the unacceptable pain, suffering or distress is directly due to the terminal illness. Rather, the clause expresses the link as being between, on the one hand, in the course of a terminal illness and, on the other hand, the unacceptable pain. No doubt the Hon. Cate Faehrmann will say the direct link between the terminal illness and the unacceptable pain is what is intended. But my point is that this is not what the clause expressly and clearly provides. Whatever the subjective intention may be, it is to the actual words used in a statute, applying their ordinary meaning, that a court looks to when called upon to interpret a statute, not the apparent subjective intention of the mover.
Clause 7 of the bill sets out the conditions under which a primary medical practitioner may assist to end a clause 4 person's life. Clause 7 (1) (c) provides that the primary medical practitioner must be satisfied on reasonable grounds of certain matters as set out in paragraphs (i) to (iv). The expression "reasonable grounds" sounds just that: very considered and fair, but further consideration reveals it to be a phantom. What constitutes these reasonable grounds? What is the standard? Is it objective—some mythical reasonable doctor—subjective or some combination of both? A perusal of the decisions of the Medical Tribunal or a reading of the occasional press story in this area does not inspire confidence in the apparent medical views of some practitioners.
Clause 7 (1) (c) (i) provides that one of the conditions the primary medical practitioner must be satisfied of is that the person making the request to die is suffering from an illness that will, in the normal course, result in the person's death. Crucially, and alarmingly, this clause does not require the primary medical practitioner to be satisfied that the person be suffering from a terminal illness that will, in the normal course, result in the person's death. It is simply an illness. I remind members how "illness" is defined in clause 3—non-definitively, as including "injury or degeneration of mental or physical faculties". No doubt the mover will say in answer to this question—at least I hope she will—that it is intended to be a terminal illness. In rejoinder I simply say that is not what the clause provides.
Similarly clause 7 (1) (c) (ii) provides that the medical practitioner must be satisfied on reasonable grounds that the illness is causing the person severe pain. Presumably the illness referred to in clause 7 (1) (c) (ii) is the same as the illness referred to in clause 7 (1) (c) (i)—it would be alarming if it were otherwise—and so we again have a situation where the crucial expression is "illness" and not "terminal illness". Additionally, while clause 4 requires the person to be experiencing pain before having the right to request assistance from a medical practitioner to end his or her life, clause 7 requires the primary medical practitioner to be satisfied the illness is causing the person severe pain. Why is there a sudden elevation in the level of required pain?
In a similar vein, clause 7 (1) (c) (iii) requires the primary medical practitioner to be satisfied that, in reasonable medical judgement, there is no medical measure that can be reasonably undertaken in the hope of effecting a cure. One question is: A cure to what? Given my earlier observations on clause 7 (1) (c), it is a cure to an illness, not a terminal illness. Clause 7 (1) (c) (iv) suffers from a similar fault. I could go on and on to further unpick the legal constructs of this bill, but the conclusions are already abundantly clear. This bill is, on any legal measure, deeply flawed. It is also in my view deeply philosophically, ethically and morally flawed.
The following questions posed by this bill illustrate this point. Why are we asking our doctors, who took an oath to preserve life, to assist in ending life? Why are we proposing measures to assist in the killing of our sick and suffering when we can generally relieve their distress through increased palliative care and support? Why are we sending a message that suicide and assisted killing is a valid choice and promoting the availability of suicide-enabling drugs when we can offer psychiatric care and other support? Why are we giving up on the most vulnerable people in our community, including our disabled, when we can invest in their quality of life? In my view, the choices promulgated by this bill move us closer to the ultimate end point of the perverse rights-based agenda championed by The Greens.
This bill tolls loudly for the most vulnerable people in our community. In my view it is a dangerous and destructive response to those who deserve our compassion and support in the most vulnerable stages of their lives. Today we must not let them down. The experience of other jurisdictions that have gone the slippery slope towards State-sanctioned assisted murder is salutary. One need only look to the Netherlands and Switzerland, where the debate has now moved on to automatic entitlement to assisted homicide for babies born with a disability and for people over 75 who have become a burden to our society. Is that really the path we wish to tread? To me this bill is itself a cry for help—its message is abundantly clear. The time has well and truly come for us as a society to take full individual and collective responsibility for our sick, our disabled and our dying.
The signs are promising, with changes such as the National Disability Insurance Scheme set to empower our disabled, increased funding for palliative care programs, strong community support and investment in suicide prevention and treatment for those who suffer from depressive illnesses. Nonetheless, we still have much more to do on all of these fronts. Today let us take this opportunity to pause and reflect on how we address these complex societal challenges, the cry for help that underpins the proposed response encapsulated in the bill. In doing so, let us continue to be a society that builds people up, not one that tears them down. Let us continue to be a society that offers hope, a society that builds quality of life for all, while supporting a dignified death for each. Let us choose life, love and mutual support, not death through misplaced compassion. Accordingly, I strongly urge members to oppose this deeply flawed bill.
Mr DAVID SHOEBRIDGE
[12.43 p.m.]: As a member of The Greens I support the Rights of the Terminally Ill Bill 2013. I note that the Hon. Matthew Mason-Cox suggested that the debate should be about life; it should be about respecting and protecting life. Indeed, that is exactly what this bill does. It protects quality of life. It allows people who are suffering from a terminal illness and who are in insufferable pain to have their last moments on this Earth—hopefully, moments that are rich with family and not degraded by the medical condition that has meant they have lost the will to live and not degraded in the ways described to me in personal messages, emails, letters and phone calls, including the intolerable suffering that citizens of this State have faced in their last moments. The intolerable suffering of patients and their husbands, parents, wives and children could have been relieved if the Rights to the Terminally Ill Bill had been law at the time of their loved one's death.
On one level, the bill is a simple bill. It is not the most complex legislation the House has considered. I have heard members try to pick the bill apart piece by piece. In my respectful opinion, that is a misguided attempt, and in some respects a surreptitious approach, to tear down what, when read as a whole, is a bill that puts in place a solid legal framework with more checks and balances than are found in comparable legislation in other jurisdictions. The bill provides a path for terminally ill people suffering from intolerable pain to end their lives with dignity. That is what this is about. It is enabling people to live their life with dignity. It is about allowing, in limited circumstances and with careful checks and balances in place, those people who are not influenced by anyone else to end their life with dignity.
The bill provides the legislative framework for the right of terminally ill people to request and receive assistance to end their lives voluntarily. Under this framework, if the bill was in law today, terminally ill people would be able to be assisted by medical practitioners to administer a substance to themselves. The bill provides an enormous number of protections. My colleague the Hon. Cate Faehrmann detailed those protections when she introduced the bill, and I will not restate her detailed analysis of the bill. However, I will refer to the core of the bill, which is part 2. Part 2, commencing with clause 4, contains the machinery provisions of the bill that allow for a request for and the provision of assistance by medical practitioners. Clause 4, which provides that a request for assistance is voluntary and to voluntarily end life, states:
A patient who, in the course of a terminal illness, is experiencing pain, suffering or distress to an extent unacceptable to the patient may request a medical practitioner (the primary medical practitioner) to assist the patient to end the patient's life.
So the test is that it must a terminal illness and there must be pain, suffering or distress that is unacceptable to the patient. Only then is the patient entitled to make the request of a medical practitioner. Clause 5, which provides the response of a primary medical practitioner, states:
A primary medical practitioner, if satisfied that the conditions of section 7 have been met, may assist the patient to end the patient's life in accordance with this Act or, for any reason and at any time, refuse to provide that assistance.
First, under the bill no medical practitioner will be required to provide assistance. As the bill makes clear, if a medical practitioner, for ethical or religious reasons, does not wish to provide assistance he or she can refuse to provide that assistance. Importantly, the bill provides that the medical practitioner must be satisfied that the conditions in clause 7 have been met. Clause 7 puts the lie to many of the arguments raised against the bill—that it is the thin end of the wedge, that it is opening up some terrible precipice where the elderly, the infirm, the ill in our society will not be properly respected. Indeed, clause 7 makes it clear that this legislation is designed to protect the dignity of terminally ill people and puts in place such safeguards that if they do go down the path of selecting to voluntarily end their life it can only end with assistance from a medical practitioner if all appropriate checks and balances are met. Clause 7 (1) provides:
(1) A primary medical practitioner may assist a patient to end the patient's life only if all of the following conditions are met …
Firstly, the patient must have attained the age of 18 years. That is a protection I think all of us would support and endorse. This is not for juveniles, it is not for children; this is only for adults. Secondly, the patient must be ordinarily resident in New South Wales. That is designed to ensure that we do not become a jurisdiction to which people travel casually in order to take advantage of this law. It is designed to be a remedy for the people of New South Wales, not an invitation to establish an industry here. Clause 7 (1) (c) provides that the medical practitioner must be satisfied on reasonable grounds. I heard some members question what "reasonable grounds" means. "Reasonable grounds" is an absolutely objective test. It is not the subjective view of the medical practitioner; it is an objective test. The medical practitioner must, on an objective basis, find:
(i) the patient is suffering from an illness that will, in the normal course, result in the death of the patient—
that is, a terminal illness. Subparagraph (ii) provides:
(ii) the illness is causing the patient severe pain, suffering or distress to an extent unacceptable to the patient
Why, one may ask, does it extend beyond pain? People with very advanced degenerative diseases may have lost the capacity to move their body, to feel any part of their body—effectively trapped within themselves, unable to speak, unable to move their limbs—and they know that their condition will degenerate to such a point that they eventually die. One can only imagine the distress that some people feel in those circumstances, and that family members feel seeing a previously vital and healthy loved one descend to those circumstances. That is an intolerable distress for some people. Knowing that going through that distress will inevitably end in the loss of their life from that degenerative illness, why would anyone stand in the way of allowing them, if they voluntarily chose to do so, with all these checks and balances, to end their life a little earlier with a little bit of dignity? Subparagraph (iii) provides that a medical practitioner must be satisfied that:
(iii) in reasonable medical judgement, there is no medical measure acceptable to the patient that can reasonably be undertaken in the hope of effecting a cure
That is, not only is the disease terminal, but there is no reasonable cure. The absence of a reasonable cure is obviously vital to allow a person to take the next step in this procedure. We are not talking here about a snake oil cure or some kind of fringe medical process. This is about reasonable medical judgement about medical measures acceptable to the patient that can reasonably be undertaken in the hope of effecting a cure. We are talking about measures that are acceptable in the broad course predominantly of western medicine. Clause 7 (1) (c) (iv) provides that:
(iv) any medical treatment reasonably available to the patient is confined to the relief of pain, suffering and distress (or any one or more of them) with the object of allowing the patient to die a comfortable death
That is the very limit of what the medical practitioner can provide. Not only must the practitioner be satisfied of that, paragraph (d) provides that:
(d) the primary medical practitioner has informed the patient of the nature of the illness and its likely course, and the medical treatment, including palliative care, counselling and psychiatric support and measures for keeping the patient alive, that might be available to the patient
This provides that the medical practitioner must do his or her job, tell the people in distress or pain about the whole suite of palliative care available, tell them what options are available for their psychiatric and counselling support, and make sure that the patients know there is an alternative if they choose to adopt it. It may be a grossly unpalatable, pain-filled, racked alternative for the patient, but the patient is advised of it and advised by the same medical practitioner.
Paragraph (e) provides that, after being informed about the alternatives by the medical practitioner, the patient needs to indicate to that medical practitioner that the decision to request the assistance still stands—in other words, they have to affirm their position—and at no time before the assistance is provided can the patient indicate otherwise. If at any time the patient says, "No, I have changed my mind, I don't want to go down that path", the process ends under this law. It just ends. It is not a one-way path; it is a path that at any time can be stopped by the patient.
Paragraph (f) provides that the primary medical practitioner must be satisfied that the patient has considered the possible implications of the decision for the spouse or de facto partner or family of the patient. One can only hope that these decisions will not be made in isolation and that the person suffering from terminal illness will be talking to his or her family. In fact, the medical practitioner needs to be satisfied that the interests of the family, the partner and the children have been taken into account by the patient.
Paragraph (g) provides that an independent qualified psychiatrist and, if the primary medical practitioner considers it necessary, an independent qualified social worker, must have examined the patient. This is not the primary medical practitioner, this is another medical practitioner—a psychiatrist—and, if necessary, a social worker, examining the patient. After that examination, the primary medical practitioner needs to be satisfied that the patient has the decision-making capacity and that the decision has been made freely, voluntarily and after due consideration. So we have the initial primary medical practitioner being satisfied of certain factors and, having been satisfied of those key factors, informing the patient about the alternative palliative care and other options available, then the patient reaffirming the position and a psychiatric assessment being done to ensure that the patient's decision-making capacity is free and voluntary, and that the decision has been arrived at after due consideration—checks and balances all the way along.
There is yet another check and balance in paragraph (i), which provides that the patient must have been examined by one other medical practitioner called the secondary medical practitioner, who is not a relative, employee or member of the same medical practice as the primary medical practitioner and who holds prescribed qualifications or prescribed experience in the treatment of the terminal illness from which the patient is suffering—that is, someone who knows intimately about the nature of the illness that the patient is suffering. That secondary medical practitioner needs to confirm the primary medical practitioner's opinion as to the existence and seriousness of the illness, deal with that core consideration about the terminal illness and confirm the medical practitioner's prognosis.
This specialist says he or she agrees with the primary medical practitioner that there is no reasonably available cure for this patient—this is a terminal illness—and then needs to advise of that. Having considered the results of the examinations undertaken by the independent qualified psychiatrist and, where appropriate, social worker, that secondary medical practitioner needs to be satisfied that the patient has decision-making capacity and that the decision has been made freely, voluntarily and after due consideration. If the primary medical practitioner provides assistance by administering a substance to the patient, the secondary medical practitioner must advise that he or she is satisfied on reasonable grounds that the patient is physically incapable of self-administering the substance. That is the second element that occasionally comes into play in this bill.
They are the extraordinary levels of medical checks and balances—psychiatrists, second opinions, comprehensive opinion as to the nature of the terminal illness—and, on top of those, the primary medical practitioner also must have:
(o) … no reason to believe that, as a result of the death of the patient, a financial or other advantage (other than a reasonable payment for medical services) will be gained by:
(i) the primary medical practitioner, or
(ii) the secondary medical practitioner, or
(iii) the independent qualified psychiatrist or independent qualified social worker …
(iv) any interpreter required … or
(v) a close relative or associate of any of them …
It all must be absolutely arm's length, each and every one of them. There is a further check and balance that at least 24 hours must elapse since the signing of the completed certificate of request by the patient or, in those instances where the patient is unable to sign it, 24 hours elapse since the patient directed someone else to complete that certificate. To all of those members who say that this bill is full of holes, this bill does not provide sufficient legal protections and this bill does not put in place a reasonable regime, I say: Read the bill. Understand the checks and balances. If members do that with an open mind, they will be more than satisfied that it protects those vulnerable people.
I appreciate that this is a complicated issue and I appreciate that the contributions on either side of the record, both for and against the bill, have been genuine. I understand the position that says people would never tolerate any State intervention about the ending of someone's life or any State regulation about the ending of someone's life. I understand where that comes from. I understand the argument that we do not want to go anywhere near the precipice of talking about the State intervening at the end of someone's life. The fact is this will not be creating an entirely new process in society—it will be in relation to the law—because legislating for voluntary euthanasia will not see it being practised for the first time in New South Wales.
It already happens in New South Wales. It is happening today; it happened last week, but it is happening without any legal oversight. The checks and balances in this bill are not being administered at the moment. They were not being administered last week, last month or last year. Providing a lawful process that allows the terminally ill to end their life with dignity will put checks and balances in place for the first time ever. It will not leave it up to the discretion in the shadow of the law that is currently being exercised by medical practitioners. It will not leave those vulnerable people who are currently making the decision in the shadow of the law without any protection.
This will ensure that due process is followed rather than allow the present situation of ad hoc, illegal and surreptitious intervention to continue. Rather than presenting an obstacle as some have suggested, this reform provides an opportunity to improve palliative care. There has been a false debate here, a false dichotomy between supporting this bill and allowing for the rights of the terminally ill, and choosing palliative care. In fact, when one looks at experience in other jurisdictions around the globe, one realises that those jurisdictions that have turned their mind and legislative attention to giving dignity to the end of life of people with terminal illness have also put in place vastly improved palliative care regimes.
In Oregon, for example, consistently the vast majority of 80 to 90 per cent of people who die from physician-assisted death are also enrolled in hospice care. That percentage has grown since the introduction of laws there in 1997. In the Netherlands palliative sedation has grown, palliative care has grown, and deaths due to the alleviation of intensive pain have grown. Palliative care in the Netherlands has expanded enormously, resourced by the State and understood by the medical practitioners, and it has grown in tandem with those people in the Netherlands suffering from terminal illnesses also having the right, with checks and balances, to voluntarily end their life. The same can be said of Belgium. This is not a choice between palliative care and the rights of the terminally ill. This is about giving people new rights. I conclude with two items of communication from people who have contacted my office. Raymond and Rae Catterall said this in part in their letter:
As you can see we live in a retirement village with self care, assisted care and nursing home facilities. In the 12 years residence we have seen strong active people progress to the nursing home and wither away in undignified circumstances over many months, starving themselves, hoping for happy dignified relief.
We have seen the anguish of sons and daughters, family and friends making frequent and infrequent visits from sometimes distant parts of NSW…
We wish to be together when there is no hope of recovery. We again urge you to vote in support of this bill.
Jillianne Weekes said:
Under current laws, it is legal for a person to starve themselves to death—which can take weeks but illegal for a doctor to relieve their suffering by giving them a quick and peaceful death.
This Bill has all the appropriate safeguards to protect the vulnerable of NSW, such as psychological assessment, no one health professional being able to make a judgement to end a person's life and no doctor or nurse will be forced to participate.
She urges adoption of this bill and support of palliative care. I do the same. [Time expired.
[Deputy-President (the Hon. Natasha Maclaren-Jones) left the chair at 1.03 p.m. The House resumed at 2.30 p.m.
Pursuant to sessional orders business interrupted at 2.30 p.m. for questions.
Item of business set down as an order of the day for a future day.