Following the Parliamentary Committee's Inquiry into end of life choices, the Government has appointed a Ministerial Advisory Panel, made up of clinical, legal, consumer, health administrator and palliative care experts, to develop voluntary assisted dying legislation for introduction into Parliament in 2017.
You are invited to provide feedback on the key issues being considered by the Ministerial Advisory Panel. Please note that feedback that expresses an opinion for or against assisted dying will not be considered by the panel.
The key issues are provided the Voluntary Assisted Dying Bill discussion paper, along with a series of questions to consider and guide discussion. Your feedback will inform the development of the Voluntary Assisted Dying Bill.
The closing date for feedback on this discussion paper is Monday 10 April 2017. Responses should be submitted via Assisteddying.firstname.lastname@example.org.
The full Final Report as well as a Summary Booklet of the Enquiry into End of Life Choices can be found here.
This article was first published in The Sydney Morning Herald of 16 January 2017 as as "Voluntary euthanasia laws to come before NSW Parliament this year".
Voluntary euthanasia laws to come before NSW Parliament this year
NSW is set to debate whether to allow terminally ill adults to legally end their lives, with a voluntary assisted dying bill expected to come before Parliament this year.
A cross-party working group is finalising draft legislation that it intends to release for public consultation as early as next month.
The group hopes to introduce its bill into the NSW Upper House for consideration in the second half of 2017 at which point MPs from all major parties would be granted a conscience vote.
However, in an early indication of the challenges facing the bill, Premier Mike Baird and Opposition Leader Luke Foley told Fairfax Media they are personally opposed to changing the law and would not vote for change should it make it to the lower house.
Mr Baird said he recognises the passion of advocates of assisted dying legislation.
"While I fully acknowledge the sincerity of those who support change, and the terrible pain that is suffered by many terminally ill people and their carers, I myself will not support any change to the law," he said.
Mr Baird said an experience with a constituent early in his political career had offered him some insight into the issue.
"The complexity of this issue was brought home to me when I was door knocking in my electorate some years ago, and was kindly invited inside to talk with a couple who were dealing with horrendous circumstances, involving terminal illness," he said.
NSW Premier Mike Baird says "all views deserve respect". Photo: Nic Walker
"While this hasn't changed my mind, it has given me a clear understanding that there are two sides of this issue, and that all views deserve respect."
Mr Foley said he would also vote against an assisted dying bill brought before the Legislative Assembly.
Nationals MP Trevor Khan watched his father die a slow, painful death. Photo: Dallas Kilponen
"I worry about the message it sends to a society where some old and frail people feel that they are too much of a burden on their loved ones, that they have to end it all," Mr Foley said.
But in a statement the working group said: "Law reform on the issue of assisted dying is necessary.
Finer details of the bill are being kept under wraps, but Fairfax Media has confirmed it will not apply to those under 18 years old and only to the terminally ill."The prolonging of pain, suffering, and distress, for both the terminally ill and their families, is not necessary; the fundamental principle behind the call for legislating to allow for assisted dying is to provide dignity to people who wish to pass peacefully and on their own terms."
Two doctors would have to agree and the person would need to be of sound mind and capable of giving consent.
The working group is comprised of Nationals MLC Trevor Khan, Greens MLC Mehreen Faruqi, Labor MLC Lynda Voltz, Liberal MP Lee Evans and independent MP Alex Greenwich.
Ms Voltz confirmed a draft bill was with parliamentary counsel and the intention was to release it for public discussion as early as next month.
"That will allow us to address any issues raised before the bill is introduced into Parliament sometime later this year," she said.
Mr Khan's late father was incapacitated by a stroke and while he was still capable of speech asked his son to help him die.During a speech to Parliament last September, Mr Khan asked: "What is the difference between allowing a terminally ill person to die naturally by abstaining from treatment; and allowing them to die through means of voluntary assisted dying?"Both are aimed at reducing suffering; both are aimed at providing dignity in the final days of one's life; both have the same reasoning, intention and outcome. Both should be legally permitted."
Mr Evans, the member for Heathcote, said he became involved in the group because his mother suffered from dementia for nine years.He said those who provided her with palliative care were "fantastic".
But he said: "At the end it was not pretty; she never wanted to end up like she did but there was no option."Mr Evans said the group expected criticism about "knocking people off" but that he and his colleagues wanted to foster open and informed debate.
The proposal comes just months after a voluntary euthanasia bill was narrowly defeated in the South Australian Parliament and as the Victorian Parliament prepares to consider its own legislation in the second half of 2017.
Significantly, Victoria's Labor Premier Daniel Andrews is backing the legislation. Mr Andrews changed his mind on the issue after the death of his father in early 2016.
The Australian Medical Association opposes legalising voluntary euthanasia. But in a policy statement released in November, the association stipulated: "If governments decide that laws should be changed to allow for the practice of euthanasia and/or physician-assisted suicide, the medical profession must be involved in the development of relevant legislation, regulations and guidelines."
AMA NSW branch president Brad Frankum supported the policy statement."The primary aim of doctors should not be to hasten death but improve quality of life," Dr Frankum said. "We feel that in the vast majority of cases adequate and timely palliative care is an appropriate way to treat people with terminal illnesses, accepting that it is not always perfect," he said.
A recent survey of AMA members found 38 per cent were in favour of doctors being involved in physician-assisted suicide, and 12 per cent were undecided. But the majority of respondents said if voluntary euthanasia was legalised doctors should be involved in assisting terminally ill patients end their lives rather than boycott the measure.
Victoria's draft bill proposes access to voluntary euthanasia for adults of sound mind in the final weeks or months of life who were suffering from a serious, incurable condition. The request would have to come from the patients themselves, and be repeated three times, including a formal written request and approved by two doctors who would be legally protected. Doctors would prescribe a lethal drug that would be taken by a patient.
Public polling has consistently showed the majority of Australians were in favour of voluntary euthanasia. A Newspoll survey conducted in October 2011 found 77 per cent of Australians believe it should be legalised, with 18 per cent not supportive.
This article was first published in The Sun Herald of 11 December 2016 as as "The time has come for NSW to legalise euthanasia".
Bravo, the Victorians. In a breakthrough this week, their Premier Daniel Andrews announced his government will introduce legislation next year that will likely legalise euthanasia, meaning that those of their citizens suffering debilitating illnesses that deliver them nothing but agony will soon be able to choose to die with dignity. South Australia nearly got there a month ago, but it is the Victorians who will be the first to go over the top.
Can we not, in NSW, quickly follow suit? Personally, I hope I have a good 40 years left in me – and I am more confident than ever, now being at my lightest weight since 1984. But, let's say I don't. Let's say I get a tumour or a debilitating condition that will force me to me wind down slowly and agonisingly. Let's say that at the age of 80 or so, I decide that my meaningful life is over, and all that awaits me is – I know, I know, too much detail – incontinent pain for the next five years. And let's say that I don't want that, and would rather pass away peacefully, and with dignity, in a medically supervised manner. My question to the opponents of euthanasia: if I choose to do that, what business is it of yours?
In a statement released on Twitter, Victorian Premiere Daniel Andrews discusses the upcoming debate on voluntary euthanasia.
You say it is because your God objects to it, as most opposition to euthanasia is religious based? Well, I do not recognise your God. You may choose to believe that, and it is none of my business. The point is under the auspices of the separation of Church and State, the NSW government should reject all religious reasons against euthanasia as well. This is a no-brainer.
Andrew Denton has worked tirelessly on the euthanasia issue for the past two years, as has his euthanasia advocacy organisation Go Gentle Australia. I'll leave the last words to him.
Andrew Denton and his euthanasia advocacy organisation Go Gentle Australia work for euthanasia. Photo: Edwina Pickles
"No one should be left to die in unbelievable pain," Denton notes. "Mike Baird was shocked by cruelty to greyhounds. I challenge him to read the testimonies of those who have watched their loved ones die in agony and then tell the people of NSW that there's nothing to be done about it."
This article was first published in the print edition of The Saturday Paper on 10 December 2016 as "The living end".
“She’s in a lot of pain.”
Kay – all the names in this piece have been changed – looked at her 93-year-old grandmother who had been unconscious in her bed for what seemed like days. The old lady looked like a wizened five-year-old under the covers, with false teeth – the latest set had always been too big – adrift in her open mouth. Her struggle for breath was painful to watch but Kay was puzzled as to why her half-sister Mel thought an obviously comatose Nan was in pain.
“But she’s in a—”
Kay felt a sharp kick under the table. Mel – a retired nurse – was staring at her meaningfully. Kay shut her mouth.
“She’s in a lot of pain,” Mel repeated to the GP.
He nodded. “Well, we can’t have that. I’ll increase the pain relief.”
A short time later Nan slipped peacefully away.
This is how many Australians die these days – at the end of a syringe full of morphine. It is completely unregulated and arbitrary but justified as an unintended consequence of seeking to relieve the dying individual’s pain – whether there is any actual pain or not. Usually the increase in pain relief is agreed to, in a coded fashion, by both the relatives and medical practitioners tending to the dying person. In some cases, as with Nan’s grandchildren, the response from those involved is relief when the suffering individual succumbs to the drug. The inevitable has come. The end has been peaceful. This is especially true when the person dying is very old and death, while sad, is not a tragedy.
Sometimes the end is not so easily found. Brian was 84. In his late 70s he had sustained an injury to his oesophagus from accidentally ingesting toxic fumes while cleaning his swimming pool. Over the years, the scar tissue in his throat had grown progressively worse and he found it very difficult to swallow solid food. From a fit and active man he had grown very frail and was suffering from geriatric malnutrition. He found himself in hospital after falling one evening, returning inside from the washing line at the retirement village where he now lived. He was too frail to get up so he lay on the ground for six hours until a security guard found him.
There was an operation that might help the scarring on his throat and had Brian been a little younger or a little stronger the surgeon would not have hesitated. Now the doctors were very reluctant. Brian was determined to undergo the operation. As he told anyone who would listen, including his children and grandchildren, he hoped the operation would kill him. His quality of life was so poor he now found it unendurable.
“He doesn’t want to wake up.” Brian’s son had promised his father he would convey his wishes to the surgical team.
“I can’t purposefully kill him, you know,” the anaesthetist replied, clearly affronted.
Indeed, after the operation Brian did wake up. When he opened his eyes and saw his children, he realised he was still alive. He groaned, wept and turned his face to the wall. It seemed he must go on suffering.
Max’s much-loved mother was a retired nurse. When she was diagnosed with the illness that would inevitably kill her, she knew exactly what was in store and she was terrified. She knew that in the end her lungs would fill and she’d slowly drown. Her terror was intensified by the fact that she had a morbid fear of drowning. Now her worst nightmare was going to come true. All her life she had advocated for voluntary euthanasia and she begged her son not to let her die of her disease.
When her condition reached its final stages, exactly what she had dreaded occurred. The end turned ugly. Worse, she did not respond well to the morphine she was given. Her son watched his mother struggle and suffer for five terrible days. Eventually Max could stand it no longer. He phoned his mother’s GP.
“This can’t go on. If she were an animal we would take her to the vet.”
“But euthanasia is illegal,” the GP replied.
Max thought his plea for mercy had failed but when he returned to his mother’s bedside, her morphine drip had been replaced by a different medication. She finally relaxed and, four hours later, she died.
At first, Max was simply relieved that his mother’s suffering had ended, but then he began to worry that he had “almost played God”. His grief at the loss of his beloved mother was made doubly hard by his guilt at his feeling that he had been the cause of her death.
This is a perspective on the euthanasia debate that is seldom considered: the immense pressure we place on the shoulders of already grief-stricken and traumatised family members to make the awful decision to end their loved one’s life. Our current murky, unregulated, under-the-radar way of death may protect the finer sensibilities of the medical profession – the Australian Medical Association has just confirmed their opposition to voluntary euthanasia – but it hangs grieving relatives out to dry.
Worse, it can create secrets and divisions in already grieving families. Max feels he dare not tell his sister the full truth about their mother’s death for fear of her reaction. This has created a barrier between them he doesn’t know how to overcome. If relatives have different religious beliefs or views about euthanasia, the family member who makes the decision may come under terrible fire. None of this is what the dying person would want, particularly if – as is so often the case – they have made their position on euthanasia clear.
Elizabeth was 86 and her life had become unbearable. Chronic osteoporosis had caused her bones to crumble. She couldn’t move and was in constant pain. She had been in and out of hospital with various infections for months. She was weary and she wanted to die. Once transferred to a convalescent home, she told her daughter, Sara, that she wanted no medical intervention of any kind. She didn’t want to take medication and she certainly didn’t want to submit to any invasive procedures. Her GP agreed to her instructions but the doctor at the convalescent home had a very different attitude. Despite Elizabeth having an advanced care directive and appointing Sara as her legal end-of-life guardian, the doctor made his disapproval more than obvious. Sara found she had to virtually ride shotgun at her mother’s bed to keep unwanted medical treatment at bay. It was clear many of the staff thought she was deliberately hastening her mother’s death. What Sara felt she was doing was shortening her mother’s suffering.
It is very hard to lose someone you love. Even if, as it was for Kay and Mel, the death is easy and comes at the end of a long life. For Max, his mother’s terrible death haunts him, partly because he let her suffering go on so long and partly because he brought it to an end. Sara had to endure disapproval and pressure from medical staff to help her mother die the way she wanted to. She remains traumatised by what was, in fact, an act of love. Brian’s son had to find the courage to ask an anaesthetist not to try too hard to keep his dad alive. These are all loving people who wished for nothing more than that their relative could be miraculously cured. If that was not an option, then they wanted what we all want – a peaceful and painless death.
When we debate voluntary euthanasia in Australia – and a bill to legalise it in South Australia recently failed to pass by one vote – we consider the wishes of the dying person. And their wishes, of course, should be paramount. If someone wants every intervention possible and to wring every last minute out of life, then that is what should happen. But, if we are honest, most of us don’t want that.
We consider the wishes of the medical profession, many of whom seem to prefer the unregulated world they currently operate in to a clear legal framework. We even consider the beliefs of church leaders and lobbyists. But there is one group that barely rates a mention. Indeed, if we do talk about relatives it is usually in a negative way, demonising them as pressuring elderly parents into ending their lives early for the relatives’ gain or convenience. Such rare situations, I am certain, could easily be covered by decent legislation.
The group we never consider are those who grieve. And those are the people who – in desperate circumstances – we currently expect to shoulder the burden of making the life or death decision without any legal support and, with some honourable exceptions, not much support from the medical profession either.
The Australian way of death is in my view cowardly, hypocritical and cruel. We all know what happens, we just don’t want to talk about it. This leaves the vulnerable people who we force to bear the brunt of the decision-making isolated, grief-stricken and further traumatised.
Victorian Premier Daniel Andrews joins 7.30 to discuss his stance on euthanasia, energy policy and family violence.
Daniel Andrews, interviewed by Leigh Sales for the 7.30 report on Thursday 8 December, on the plan for introducing a Voluntary Euthanasia bill in Victoria. The section starts 3.21 minutes into the clip.
Watch the clip or read the transcript below:
LEIGH SALES: On another matter your Government announced today that it will introduce legislation into the State Parliament next year for legalised voluntary euthanasia and you're setting up an expert panel to help draft that legislation.
What do you think is the time frame on that for a likely vote?
DANIEL ANDREWS: We will introduce a bill, a bill with all the safeguards that we need. So a compassionate set of arrangements for those who are being let down by the current system.
We will introduce that bill in the second half of next year and I think the whole matter can be determined one way or the other before the end of 2017.
LEIGH SALES: You've said your father's death earlier this year and his long illness from cancer has changed your views on this issue.
Is it alright if I ask you about that in a little more detail?
DANIEL ANDREWS: Sure.
LEIGH SALES: I know it's recent so ...
DANIEL ANDREWS: No, that's fine, Leigh.
LEIGH SALES: What were your father's final weeks like?
DANIEL ANDREWS: They were the final weeks of someone who had been a very big person, a big person in stature and in the contribution he made in our family and in the community that he loved and he was a big figure in my life obviously.
He withered away, in great pain. He passed away many weeks before he died, Leigh. He was not the person that I knew and loved at the end of his cancer journey.
And that might be described as a good death. There are many people who go through far more painful and frankly horrific weeks and months at the end of their life.
We can do better. We can do much better and that's why I'm determined to put a bill before the Victorian Parliament with the safeguards necessary to make sure that we empower people to exercise a choice with compassion.
Of course with rigour and process around that. I think we can get that balance right.
LEIGH SALES: People who don't support euthanasia say that palliative care is enough to ensure a comfortable, dignified death. Was that the case for your father?
DANIEL ANDREWS: Oh, look, there's no criticism of the care my dad got. I was a health minister for many years, but to see it as a family member of a patient, I'm in awe of our palliative care people.
Those specialists, our doctors, our nurses, they do amazing work. This is not in any way a criticism of them.
But there are real gaps, palliative care, pain relief as we know it can only go so far.
That's why the coroner terribly has to report to us that over a three or four year period in recent years some 240 Victorians have taken their own life.
There's a gap here and we need to fill that gap with a responsible new set of laws that are compassionate but have safeguards as well.
Let's have this debate.
We've ducked this difficult issue for far too long. I know my view has changed based on my own personal experiences.
I think the Parliament's ready to pass these laws if they're drafted well. That's what I'm going to do, put a good bill to the floor of the Parliament and let's see what happens.
LEIGH SALES: Premier, thank you very much for your time this evening.
The Death With Dignity Bill 2016, put forth by Liberal MP Dr Duncan McFetridge, had its second reading debate on the evening of Wednesday November 16. It historically passed to the committee stage after three hours of debate, with the vote being 27 for and 19 against.
Following the committee stage amendments debate, and some eight hours of debate in total, the Death With Dignity Bill 2016 failed to pass the lower house in the early hours of the morning on the casting vote of Speaker Michael Atkinson. The vote to progress the Bill to a third reading was 23-23, with Mr Atkinson's vote bringing the noes to 24, defeating the Bill.
MPs were granted a conscience vote for this debate. Many accepted that there was a proven high level of community support but said that would not influence their vote.
Who Voted For A Third Reading:
Ms Frances Bedford, Member for Florey (ALP)
Hon Leon Bignall, Member for Mawson (ALP)
Hon Geoff Brock, Member for Frome (Independent)
Hon Paul Caica, Member for Colton (ALP)
Ms Vickie Chapman, Member for Bragg (Liberal)
Hon Susan Elizabeth Close, Member for Port Adelaide (ALP)
Ms Nat Cook, Member for Fisher (ALP)
Mrs Annabel Digance, Member for Elder (ALP)
Mr Jon Gee, Member for Napier (ALP)
Ms Katrine Hildyard, Member for Reynell (ALP)
Mr Eddie Hughes, Member for Giles (ALP)
Hon Steph Key, Member for Ashford (ALP)
Mr Steven Marshall, Member for Dunstan (Liberal)
Dr Duncan McFetridge, Member for Morphett (Liberal)
Hon Stephen Mullighan, Member for Lee (ALP)
Mr Lee Odenwalder, Member for Little Para (ALP)
Mr Chris Picton, Member for Kaurna (ALP)
Mr David Pisoni, Member for Unley (Liberal)
Ms Isobel Redmond, Member for Heyson (Liberal)
Ms Rachel Sanderson, Member for Adelaide (Liberal)
Hon Jay Weatherill, Member for Cheltenham (ALP)
Mr Corey Wingard, Member for Mitchell (Liberal)
Ms Dana Wortley, Member for Torrens (ALP)
Who Voted Against A Third Reading:
Mr Troy Bell, Member for Mount Gambier (Liberal)
Hon Zoe Bettison, Member for Ramsay (ALP)
Mr Sam Duluk, Member for Davenport (Liberal)
Mr John Gardner, Member for Morialta (Liberal)
Mr Mark Goldsworthy, Member for Kavel (Liberal)
Mr Steven Griffiths, Member for Goyder (Liberal)
Hon Martin Hamilton-Smith, Member for Waite (Independent)
Hon Tom Kenyon, Member for Newland (ALP)
Mr Stephan Knoll, Member for Schubert (Liberal)
Hon Tom Koutsantonis, Member for West Torrens (ALP)
Mr Adrian Pederick, Member for Hammond (Liberal)
Mr Michael Pengilly, Member for Finniss (Liberal)
Hon Tony Piccolo, Member for Light (ALP)
Hon Jennifer Rankine, Member for Wright (ALP)
Hon John Rau, Member for Enfield (ALP)
Hon Jack Snelling, Member for Playford (ALP)
Mr David Speirs, Member for Bright (Liberal)
Mr Vincent Tarzia, Member for Hartley (Liberal)
Mr Peter Treloar, Member for Flinders (Liberal)
Mr Dan van Holst Pellekaan, Member for Stuart (Liberal)
Hon Leesa Vlahos, Member for Taylor (ALP)
Mr Tim Whetstone, Member for Chaffey (Liberal)
Mr Mitch Williams, Member for MacKillop (Liberal)
November 16, 2016
Dr McFETRIDGE ( Morphett ) ( 22:09 ):
Let me first acknowledge the passion and caution with which members of parliament have approached this debate. During the lead-up today, some friendships have been severely strained; others have been cemented. I acknowledge the enormous work and help of the member for Ashford and the South Australian Voluntary Euthanasia Society. More recently, the Go Gentle group, headed by Andrew Denton and David Hardaker, has given this campaign a real boost to get this bill to this place today.
Today, we are able to choose, choose what happens to this bill. We can choose to give life to the legacy Kylie Monaghan wanted to see, we can choose to give South Australians who are dying of a terminal illness the right to choose, to choose the time of their death. They are going to die. They have no choice in that. Remember, we are debating the future of real people in real pain and real suffering. They are mothers, fathers, sisters, brothers, sons and daughters. They are your family and they are my family. Let us choose to let them go gently.Read more
November 16, 2016
Ms BEDFORD ( Florey ) ( 22:07 ):
I can truly say that I have listened to every contribution to the debate on every bill in the past year, and all I wish to add is that I believe voluntary euthanasia should be part of the suite of end of life treatments available to people, with the necessary checks and balances, of course. We pay great attention to all the opinions in the debate, and we will be looking at all the amendments that come before us, and again, I will be paying a great deal of attention to each of the amendments.
I would like to commend both the member for Ashford, in particular, and the member for Morphett for all their work on this bill. I remember very well perhaps the first bill that we ever dealt with that was a conscience bill on an issue such as this, which was the prostitution debate. I am sure that those of you who were here will remember the long hours that we spent on that and that we divided on almost every clause, something that may actually happen here in the next 24 to 48 hours.
At the very end of the debate the bill was lost and someone said to me, 'What a complete waste of time that was.' I want everyone to remember that that is how our democracy actually works. It is terrific that everyone has had something to say about this matter. This debate has been championed by a great many people, and I would just like to remember our dear friend, Mary Gallnor, here tonight.
November 16, 2016
Ms COOK ( Fisher ) ( 21:45 ):
I rise with pride to speak in support of the Death with Dignity Bill. This has weighed very heavily on me for some time now in parliament under the previous iteration presented by the member for Ashford as a voluntary euthanasia bill. I have not prepared a speech. I thought what I would do is run through some of the things that I have been presented over the past 12 months by people in my electorate—people statewide, nationwide and internationally—and how I have managed to use my own thought processes and my experience through my nursing of over 30 years—yes, over 30 years is a long time—with patients in various types of settings.
One of the settings that comes to mind has done so because of the member for Elder's heartfelt contribution. For some years, I looked after people in an institution who were profoundly disabled. Not all people who are disabled have a deficit with their cognitive ability to rationalise where they want to be on this earth either. Many of them are profoundly physically disabled because of an illness or a degenerative medical condition which leaves them in a situation where they cannot care for themselves.
I could stand here and give you a very specific and colourful description of the reality of what their space is in a bed where they can do nothing for themselves anymore but lie there. They cannot use their bowels themselves and they cannot even do that lying in bed. They have to be elevated up into a position of gravity so that it helps to force this from their stomach. My point of telling you that colourful description, which I hope you can get out of your head before you go home, is that dignity is subjective. Pride is subjective. Suffering is subjective.Read more
Ms WORTLEY ( Torrens ) ( 21:44 ): Tonight, we have heard from so many in this chamber from both sides of the voluntary euthanasia bill debate. I have read the many letters I have received, both for and against, from members of my community. I have spoken to so many of my constituents—health professionals, doctors, nurses, carers, members of community sports clubs, Rotary, Neighbourhood Watch groups, my family and extended family, and advocates from so many representative groups—both for and against voluntary euthanasia.
Like everyone here, I bring my own personal experiences. I have read the many articles written with great passion by those on both sides of the debate. I have discussed the bill with colleagues on both sides and spent many hours considering the previous bill and the one we now have before us. Whatever the outcome of this debate, the decision we make must not be one that puts vulnerable people at risk. The previous bill I could not support. Tonight, I will support this bill through the second reading and consider the amendments and the impact on the final bill.