By Andrew Denton
WHY is a two times failed Gold Logie nominee like me campaigning for a voluntary assisted dying law? The reason is: I watched my father, Kit, suffer needlessly before he died. It was terrible to watch and it’s stayed with me ever since
As I’ve shared my story I’ve discovered I am far from alone. I have had hard-nosed politicians come to me and tell me — tears welling in their eyes — of how a beloved mother or father or uncle suffered in their final days. Daughters have written to me of how they pleaded with doctors for more pain relief for mum or dad, but were told it wasn’t possible. Recently, a Melbourne woman in her 50s told me of her husband’s last weeks of agony as he literally starved himself to death.
Others have spoken of more violent ways family members have chosen to end their suffering. These have all been legal ways to die. They have been excruciating and they have left a devastating legacy. There is a constant chorus of these stories — and they happen even with the best of palliative care and with the best of medical intention.
I watched my father, Kit, suffer needlessly before be died. It was terrible to watch and it's stayed with me ever since.
Our ambulance workers and police know it better than most. They see first-hand the horrific ways in which some elderly, terminally ill people have ended their ordeal.
It’s no coincidence that the most powerful push for change from within the medical community comes from the state’s nurses. It is they who see the suffering of patients close up, day in and day out. And it is they who are left to deal with the hardest question of all: “Why won’t you help me to end the suffering?”
A very clear majority of the community — about 70-75 per cent, even among Anglicans and Catholics — consistently support the idea that people in the final stage of life should be able to voluntarily end their suffering with medical assistance.
In short this has become the personal story of so many people that there is a need for public policy to address it. We can’t continue to look the other way.
Those who’ve witnessed the awful death of a loved one carry the trauma with them for the rest of their lives. They speak of an overwhelming sense of powerlessness in the face of desperate pleas from a loved one. And they speak, too, of guilt that they were unable to stop the suffering of those they love, even though they did everything legally available to them. Even though the medical profession did its best. We are all scarred by these experiences, particularly women, who make up 70 per cent of our carers.
Andrew Denton with his father, Kit.
Soon, a law for voluntary assisted dying will be debated in the state parliament. We have arrived at this point via an Upper House inquiry that ran for close to a year and heard from more than a thousand individuals and organisations across the state. The evidence they heard was powerful. By a 6-2 majority the cross-party committee recommended that there should be a voluntary assisted dying law for the citizens of Victoria.
THIS law is not intended to take the place of palliative care, but rather to be one more option available to a patient and their doctors at the end of life. The truth is, despite all our advances in medicine, there are some for whom even the best palliative care does not work.
A panel of medical experts is advising on how to implement a law in a way that assists those in need and protects the vulnerable. This has already proven possible overseas. There the majority of those who use the law are 70 years or older, are suffering from cancer and are in the final stage of life. In the US state of Oregon, those who use a voluntary assisted dying law account for less than 50 in 10,000 deaths. They have requested to use the law voluntarily and two independent doctors have agreed they have six months to live or less. Twenty years on, Oregon’s law is unchanged and widely accepted. Similar laws are now available to one in six Americans. The threatened “slippery slope” has failed to materialise — as have so many other dire warnings.
A law to help society’s most vulnerable — those who are dying and beyond the help of medicine — now lies within reach of Victorians. A broad coalition for change has come together under the banner of our campaign, “Stop Victorians Suffering”. It brings together the voices of the terminally ill, carers, the elderly, those with cancer, motor neurone disease or MS or Huntington’s disease, nurses, doctors, retired police, ambulance employees … the list goes on. They are the people you’ll meet at the sausage sizzle after the kids’ sport. They are the people who make our communities and our neighbourhoods. And they are ready to let their local MP know how they want them to vote.
We don’t expect our politicians to make law solely by opinion poll. But the sheer weight and breadth of support for a voluntary assisted dying law should tell parliamentarians this: first, most of your constituents will thank you for supporting the law, and; second, voters don’t want you to politicise this issue. It crosses all party lines because none of us knows when it may be our family that faces the hardest question: How can we help someone we love die, when only death will ease their suffering?
A Victorian nurse dying from an aggressive form of brain cancer is calling on State MPs to heed the will of the electorate and vote for a voluntary assisted dying law.
Jen Barnes, from Inverloch in South Gippsland, has been a nurse for 40 years and received her diagnosis in May last year.
She is fronting a new campaign, “Stop Victorians Suffering”, backed by Andrew Denton’s Go Gentle Australia organisation.
Jen Barnes is being supported by her Melbourne-based oncologist, Dr Ross Jennens, who says ‘there is a small percentage of people whose suffering can't be controlled and currently the only other option available for those patients is suicide, which is not acceptable.’ Dr Jennens says the issue is one of ‘patient autonomy’.
Jen Barnes says she is campaigning for choice at the end of life.
“Palliative care in Victoria is very good but I’ve seen that for some it doesn’t work.
“It’s very important to me to have control of my destiny. Anybody that knows me knows that I wouldn’t want it any other way.”
“70-75% of us want this law and that’s what I want our politicians to focus on. It’s important for politicians to be there for their community because they’re not there just representing themselves.”
“I may be lucky and I may just drift into a slumber. But I may suffer with seizures. I could certainly potentially be confused or have my words so jumbled that I make no sense.
“I know that at some point in time they’re not going to be able to help me and they’ll say, ‘No, we can’t operate, we can’t give you treatments anymore, and this is the beginning of the end’.
“I don't want to die. No-one wants to die. Because we all want to see the next grandchild, the next birthday, the trees bloom or whatever – we all want that. I’d like to be there for the 40th wedding anniversary with my husband, Ken.
The campaign, being driven through social media, launched today via the Stop Victorians Suffering website, where you can sign the petition.
MORE ON THE LEGISLATION:
Voluntary assisted dying legislation is set to be introduced to the Victorian parliament later this year by Health Minister, Hon. Jill Hennessy MP. The issue is set to be decided by a conscience vote. If the law is passed, it will come into effect from 2019.
An expert panel headed by former AMA federal president, Prof Brian Owler, is advising the government on the detail of the legislation and is due to report by the end of July.
Last year a cross-party Upper House committee of the Victoria parliament recommended the government introduce voluntary assisted dying legislation as an option available to adult Victorians who have only weeks or months to live and suffer from a serious and incurable illness.
Independent opinion surveys consistently find around 75% support for a voluntary assisted dying law with strict eligibility criteria and strong checks and balances, to help the suffering and to protect the vulnerable.
The most important feature is that the law will be completely voluntary: for patients, doctors and also institutions. No-one is ever forced to take part and there are strong safeguards to ensure this.
For more information go to: http://www.StopVictoriansSuffering.org.au/the_law
Today Tonight Adelaide on Channel 7 nails it on how the legislators have failed us on voluntary assisted dying. Watch one woman’s story. Astonishing.
© Today Tonight Adelaide, Channel 7
This story was aired on 13 March 2017.
Sometimes, even with the best care available, life hurts more than death. Unbearable suffering is forced upon the terminally ill - and their loved ones looking on - because Australia has no voluntary assisted dying laws.
In 2017 that can change.
This year the Victorian Government will introduce legislation for a voluntary assisted dying law. Every previous attempt has been defeated by people who insist that you must suffer for their beliefs.
More than 70% of us want a choice about what happens to us at the end. But, right now, none of us have one.
Your money will help us campaign so that your voice is heard loud and clear by Victoria’s politicians.
Please donate now.
The road ahead in Victoria
2017 is a year of great promise for anyone who supports the choice of voluntary assisted dying. As we report later in the newsletter, there is action – at various stages – across virtually all Australian states. In Victoria the clock is now ticking on a conscience vote to be held in the state parliament in the second half of the year.
To date Victoria has been an object lesson in how to bring politicians and the public along in the process of legislative change. The milestones are:
- Midway through last year a cross party Victorian Upper House committee recommended that the government introduce voluntary assisted dying legislation.
- At the end of last year, Victorian Premier Daniel Andrews agreed that the government would back the introduction of legislation. This was a critical move. It meant that the resources of government would be committed to supporting the bill in its passage through the house. Virtually all previous attempts in Australia have been private members’ bills, which means they do not get nearly the same level of support.
- Earlier this year the Victorian Health Minister, Jill Hennessy, introduced a further layer of consultation when she appointed an expert committee to advise on the technical aspects of the legislation. Significantly, the Minister appointed as chair Professor Brian Owler, a neurosurgeon and immediate past Federal president of the AMA. The AMA, of course, has maintained a policy of opposition to voluntary assisted dying even though an internal survey last year revealed its membership is close to evenly split on whether or not VAD should be legalized.
The Owler committee is seeking stakeholder comment on key areas of legislation such as eligibility and safeguards, with comments closing on April 10.
Significantly the Victorian Health Minister has made it clear that the legislation will have a narrow scope, similar to legislation which has operated successfully in the USA. She has positioned it this way:
‘The Andrews Labor Government believes that all Victorians are entitled to high quality end of life care, consistent with their preferences and values. This includes people having access to high quality palliative care, the right to consent and refuse medical treatments through advance care directives and, in limited circumstances, the option of voluntary assisted dying for those with a terminal illness who are dealing with unbearable suffering. ‘
At the same time there has been a landmark legal decision which endorses the approach of Dr Rodney Syme, well known to Australians for his advocacy of voluntary assisted dying under strict conditions. The Medical Board of Australia had accused Dr Syme of being a ‘danger’ to patients because he had supplied, or offered to supply, Nembutal to dying patients facing unbearable suffering. However, the Victorian Civil and Administrative Tribunal found in favour of Dr Rodney Syme last December, noting that:
‘The holistic approach adopted by Dr Syme is entirely focused upon supporting the patient in life rather than pre-empting the patient’s death’ and that his actions were consistent with the AMA’s advice that ‘all patients have a right to receive relief from pain and suffering even when that may shorten their life’.
The Tribunal was critical of the Medical Board, saying that they ignored 'the fact that a rational and competent patient may reach a stage when they choose not to endure any further intolerable suffering or rely upon traditional palliative care’.
It went on to say that ‘the Board effectively dismisses or discounts:
- The right of any individual of sound mind to seek reassurance that they will be able to, if they wish, control the manner of their dying.
- The palliative effect on a patient, knowing that they are dying; and
- That the reassurance of the promise or actual possession of the drug does not, from the patients’ perspective, place them at any risk.’
Of equal importance is the tribunal’s finding that Dr Syme’s work was entirely consistent with good palliative care, and indeed that it was indistinguishable from it. Significantly, two palliative care experts advised the tribunal in its findings.
It now remains to be seen if the Victorian government’s careful legislative process and the power of the facts of Dr Syme’s case will convince a majority of the Victorian parliament to vote in favour of the legislation.
The case looks compelling. But we will need your help to make it happen. If you live in Victoria, the best thing you can do is contact your local state member to let them know – via email or in a meeting – that this issue really matters. Victorians – and indeed anyone in Australia - can also make a financial contribution, to help us with our campaign effort.
Change won’t happen without you. And now is the time.
New South Wales – According to Trevor Khan’s office, the NSW Parliamentary Working Group on Assisted Dying met in late January and decided on some final policy questions outstanding from the consultation and drafting process, and the Bill is currently with Parliamentary Counsel for a final draft. They aim to have a final public exposure Bill for release within a month, and they currently anticipate having the Bill introduced and debated in the upper house during the Spring session.
There was an article on the front page of the Sydney Morning Herald on 16 January announcing the release of the NSW VAD Bill and a two-page spread inside. See -
There have been other articles in various local and regional papers since the announcement with many local MPs stating their positions.
Other developments include that two Liberal opponents have stepped down – Premier Mike Baird and Health Minister, Jillian Skinner and one Labor supporter, Kathleen Smith so there are three bi-elections pending in NSW.
Tasmania - The new Tasmanian Voluntary Assisted Dying Bill 2016 that was introduced in Parliament on 17 November 2016 could be debated as early as next month after Parliament resumes in March.
The co-sponsors of the Bill, Lara Giddings, former Premier and now Labor MP for Franklin, and Cassy O’Connor, Leader of the Greens and MP for Denison say they tabled the Bill last November to give members time to digest its contents over the summer break so that it would be ready for debate and a conscious vote early this year.
Ms Giddings said much had changed since the past bill failed and there was now more momentum for change.
If passed the Tasmanian law would allow a last resort option for some very seriously ill, competent adults, who have worked with their doctors to all make voluntary and informed choices to end intolerable and unrelievable suffering through an assisted death.
Assisted deaths can only happen when there is no reasonable chance of the person’s recovery, or any improvement in their medical condition or the relief of their suffering, as determined after a rigorous process. It also establishes a system which is doctor-safeguarded and safeguarded through an independent Registrar with significant powers and responsibilities to monitor and review all deaths and take action, including an annual report to Parliament.
A story in The Examiner in December showed the human face of the assisted dying bill. People like Joan Fitz-Nead (pictured) who suffers chronic and debilitating pain as her body crumbles around her due to spinal disintegration. See - http://www.examiner.com.au/story/4330215/human-face-of-euthanasia-bill/
Western Australia - Dr Alida Lancee and Dying with Dignity Western Australia continue to campaign for law reform by supporting the cross-party working group consisting of Robin Chapple from the Greens, Alannah MacTiernan from Labor and Liberal Tony Simpson.
Drafting of the Freedom of Choice At The End Of Life Bill began last year and if passed it would allow a competent adult, who is dying from a terminal illness, to request medical help to die quickly rather than slowly, when their suffering remains unbearable despite optimal palliative care. There would be strict safeguards in place to ensure the Bill will only apply to those for which it is intended.
It is their intention to make voluntary euthanasia law reform an election issue and they aim to get expressions of support or opposition from every MP before the March 11 State Election. The plan is to introduce the Freedom of Choice At The End Of Life Bill after the State Election, however, details of the bill will need to be finalized after the election and the wording is likely to be guided by developments in Victoria.
Dr Alida Lancee is running as an independent candidate in seat of Cottesloe (the Premier’s electorate) in order to highlight his opposition to voluntary euthanasia law reform.
A launch of the Freedom of Choice campaign was held on 5 February and it was a huge success. Over 250 people attended, dressed in orange, which is the campaign colour for the setting sun.
- Dr Rodney Syme,
- Emeritus Professor Max Kamien of General Practice at UWA,
- Clive Deverell, former Executive Director of Cancer Council WA and former President of Palliative Care WA
- Murray Hindle, President of DWDWA.
Videos of their speeches can be viewed at freedomofchoicewa.com
Media attended and the launch made the TV news (Channel 7 and Channel 9) and the front page of The Western Australian.
The three politicians and GGA spokesperson, Shayne Higson sent video messages indicating their support.
There is a CommunityRun petition in support of the Freedom of Choice At The End Of Life Bill.
Queensland - DWDQ met with Members of Parliament in the second half of 2016 in order to provide education and seek their position in relation to assisted dying legislation. To date, they have seen around a third of the MP’s. According to DWDQ’s President, Sharon Tregoning (pictured), recent meetings with LNP MPs indicate that the LNP would rather this issue be ‘kicked into the long grass’.
After waiting sometime for a response from the health committee to Speaker Peter Wellington’s call for a parliamentary inquiry to be held into end of life choices, they have now said that they cannot make a decision. This unexpected response has sparked an email campaign calling for the Committee to reconsider.
At the ALP state conference at the end of October, the following motion was approved.
“Labor will initiate community consultation towards implementation of legislation for dying with dignity”. The following clause was pre-existing. “That voluntary euthanasia, in addition to comprehensive palliative care options, should be legally available as an option for a person of sound mind suffering from a terminal illness that has diminished their quality of life to the extent that the person requests termination of their life. Labor supports a conscience vote on the question of voluntary euthanasia consistent with the 1996 decision of the national executive.”
No action is expected prior to the next election, due late in 2017 or early 2018.
The growing support for Pauline Hanson’s One Nation party may have an impact on the campaign for VAD in Queensland because One Nation has a policy supporting VAD. It is possible they will win 11 seats in the state election.
LNP MP, Steve Dickson has moved over to One Nation and is now their Queensland leader. He previously opposed VAD, however, he may now be forced to change that position.
Sharon Tregoning (DWDQ) will be meeting with the Deputy Opposition Leader and the Opposition Shadow Attorney General in the coming weeks.
South Australia – Since the close defeat of the Dying With Dignity Bill 2016 in the South Australian House of Assembly on 17 November last year, the South Australian Voluntary Euthanasia Society (SAVES) continue to campaign for law reform.
SAVES prepares regular one page newsletters which summarise current debates in the campaign to legalise voluntary euthanasia and they provide them to all SA members of parliament during every sitting week. These Newsletters can also be accessed by supporters in order to update their knowledge, as a basis for discussion with local MP’s, and in general community discussion. See - http://www.saves.asn.au/newsletters.php
ACT and NT – On Thursday 16 February, a number of Senators spoke in Federal Parliament during the Second Reading of the Restoring Territory Rights (Assisted Suicide Legislation) Bill 2015. As part of his speech Senator David Leyonhjelm said:
“My bill would not automatically make assisted suicide legal in the territories but it would overturn the Andrews bill and allow the parliaments of the territories to come to their own conclusions, just like people in other states. Those in favour of assisted suicide will support me. But I also seek the support of those who oppose assisted suicide but believe the territories should be free to debate and amend their own laws.”
A number of other Senators spoke before the debate was adjourned and all were in support of this bill.
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.email@example.com.
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)