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Terminally ill man Stuart Armstrong responds to a first-person piece on assisted dying Newsroom ran last week, arguing people should have the option to choose a death that reflects their life and beliefs.
This week Serena Jones wrote an article describing her position on the upcoming referendum on the End of Life Choice Act.
Like her, I am living with terminal cancer.
However, I hold very different views on the Act.
Why will I be forever grateful for David Seymour's tireless work in bringing this law forward?
I'm a 60-year-old energetic, sporting man who has lived, by any measure, an active life. I have two adult children (Rachel 31, Sean 29) and a wonderful and supportive wife (Rebecca). Add to that my extended family and friends and you can see I’m a lucky guy albeit one in an unlucky position.
Six years ago I was diagnosed with prostate cancer. A series of PSA tests indicated that I was slightly outside the normal levels for my age and as my father had undergone both surgery and radiotherapy to survive his prostate cancer (he’s still here aged 85!) I decided in conjunction with my GP to have a biopsy of my prostate gland. For the medically curious, it’s called a TRUS (Trans Rectal Ultrasound Guided) biopsy. I had two sets of these, seven months apart. Both sets of results gave a Gleason Score of 6/10. This score can be interpreted to mean the location of the cancer was most likely still within the prostatic capsule and the type of cancer was not necessarily aggressive. I still remember celebrating with my family with a restaurant meal and a good splash of drinks.
Just five months later, the next PSA test result was still heading in the wrong direction and I was confronted with the unexpected and ugly realisation that the biopsies had not revealed the full picture. A more conclusive 'saturation biopsy' showed a Gleason Score of 9/10 and a very likely 'life-limiting' prognosis.
Anyhow, enough about how I got here…
I want to expose the failings in logic and understanding in Serena Jones’ article.
At the heart of her writings was her belief that somehow the availability as an option, of some medical assistance to die, will be detrimental to the patient-doctor relationship. To quote her, this is an “avoidance to this commitment” (to good palliative care).
Even more disingenuous is her claim that doctors who choose to assist a patient to die are taking a “shortcut, or an exit ... to avoid understanding and participating in the actual requirements of care”. I consider this her most egregious slight against a profession which, in my experience, demonstrates on a daily basis, empathy and importantly compassion, for people in our position.
Jones then notes there are “many hundreds” of doctors against this End of Life Choice Act. What she fails to mention however, is that there is widespread support from healthcare professionals, including many working in our palliative care services, for end of life choice. This mirrors more than 20 years of polling on this issue that has consistently reported that 65-70 percent of New Zealanders are indeed in favour of a law such as this.
Why is that, do you think? It's likely, at least in part, to be a response to the fact that even our palliative care services in New Zealand, which Jones quite rightly quotes as being rated the third highest quality in the world, cannot mitigate the awful suffering of between 2-5 percent of their patients at the end of their life. There is even a book that documents this rather grisly scenario. It rather bluntly, but at least honestly, is titled Dying Badly in New Zealand.
Now let’s deal with the 'elephant in the room' regarding her argument…
Jones would have us believe that somehow End of Life Choice was compulsory. That doctors were being forced into participating and patients coerced alongside them.
That is the underlying premise of her article no matter how she skirts around it.
But it's untrue.
It is no accident that the law is called the 'End of Life Choice Act'. It offers a choice that over 120 million people around the world already have access to.
Like many in my position, I do not want to die reliant on an ever-increasing dose of morphine, slowly but inexorably drawing me further from consciousness and closer to death.
I want my death to reflect my life and core beliefs ... my definition of spirituality if you will.
I wish for a death, if I’m able, on the back of my horse Julia with my wife, family and friends around me for support. I will die as I have lived, with spirit, energy and passion.
Some doctors will choose to opt out of this service and the Act allows for individual conscientious objection. However, there are many more who will choose to honour and embrace the last wishes of their patients and through this last act of compassion facilitate for them an enlightened and more dignified death.
Source: Waikanae Watch
The complex made simple
Have you received your enrolment pack from the Electoral Commission? If not, it will be arriving in your post box soon.
I was delighted with mine; clarity and neutrality are the distinguishing features and particularly in explaining the two referendum topics.
As a long-time advocate for assisted dying legalisation, it is a joy to see the End of Life Choice Act 2019 so factually outlined and with a total absence of the hype and hysteria we see about it in the media. A link at the end of the Summary takes you to the full text of the Act when you go to www.referendums.govt.nz.
The End of Life Choice Act
The End of Life Choice Act 2019 was not sponsored by the government (currently comprising Labour, Greens and NZ First). It was sponsored by ACT Party MP David Seymour who is not part of this government, though he is of course part of this 52nd parliament.
Amendments were made to the draft legislation during its two-year passage into law by Seymour himself who accepted feedback from some of the religiously conservative MPs and adjusted to satisfy their concerns. Many more amendments were proposed but were rejected by the majority of lawmakers as being unnecessary or simply a transparent attempt to hobble the operation of the law should it come into force. The public had nine months to make submissions – three times the usual length of time.
What we now have is a balance between what parliament believes is safe legislation and what it believes is necessary to protect its misuse. What was a Bill (draft) is now an Act (completed legislation that cannot now be changed).
Over to us
It is the job of our lawmakers (parliamentarians) to digest the complex, detect the potential unintended consequences and re-craft legislation so that the law operates as intended. They have done that. They are now handing it back to us. If the majority votes Yes, the Act will come into force exactly as it stands – there will be no further amendments now. If the majority votes No, the Act will cease to exist and there will be no attempt to resurrect it.
There are only two possible answers to the question: “Do you support the End of Life Choice Act 2019 coming into force?” Yes or No. There isn’t a Don’t Know option. Voters who really cannot make up their mind could abstain from voting on this topic, but nevertheless vote for their preferred Political Party and their preferred Electorate Candidate as usual.
Referendum questions are always worded by parliament, not by PR companies.
Full referendum information is at www.referendums.govt.nz If you haven’t yet enrolled but wish to vote, there’s also a link you can click to enrol.
Source: The Democracy Project
As the debate over assisted dying rages in the run-up to the referendum at the election on September 19, a persistent problem continues to dog the discussions. That is to say, a prominent spokesperson for a particular group takes a strong public stand in opposition without acknowledging that they don’t speak for all the members they purportedly represent.
At the moment, the most obvious case in point is Paula Tesoriero who, by virtue of her position as the Disability Rights Commissioner, is assumed to represent the opinions of all the disabled community in her unwavering opposition to David Seymour’s End of Life Choice Act.
As someone who strongly supports the Act coming into force, Diversity New Zealand’s managing director, Philip Patston, was interviewed alongside Tesoriero on TVNZ’s Breakfast this week. He told John Campbell: “I feel Paula is overstepping her mark. In her position, she should be advocating for people to have choice.”
Act’s deputy leader, Brooke van Velden, who was the backroom force behind the passage of Seymour’s bill in Parliament, was even more blunt: “It’s disappointing that the Disability Rights Commissioner has continued to politicise her role… The Disability Rights Commissioner has a duty to remain impartial and uphold the level of integrity and conduct we expect from all other state servants who fall under the State Service Commissioner’s mandate, especially so during the election period.”
Patston has a very good idea of exactly what Tesoriero’s position as a commissioner requires given he was employed by the Human Rights Commission in the 1990s and is heavily involved in disability issues, both professionally and privately. He has recently started a private Facebook group, Disabled People Supporting End-of-Life Choice (NZ), and has had 24 people with a disability join within a couple of weeks.
In an email exchange after the programme aired, he said: “The role of the Disability Commissioner is important and valuable in preventing discrimination and inequitable treatment of the disability community. However, it is not the role of the Disability Commissioner to make personal decisions for all people with a disability. In jurisdictions where assisted dying is legally available, there is no evidence that people with a disability are either over-represented or negatively impacted.”
Furthermore, Patston points out that Tesoriero simply cannot know how many in the disabled community oppose or support assisted dying because, “There has been no research undertaken about disabled people and end-of-life choice in New Zealand. This was pointed out by PhD student Jessica Young who headed up a group of researchers at Otago University studying New Zealanders’ attitudes to assisted dying over the past 20 years.”
In the absence of local data, he referred to a poll in 2015 in the UK reported by Disabled Activists for Dignity in Dying (Dadid) that showed “significant support from people with a disability”.
Dadid is a group which believes “organisations representing disabled people should reflect the views of all disabled people, both those who support and oppose change. At present they only oppose change — giving no voice to those of us who support change.”
And there are a lot. The poll showed that 86 per cent of disabled people surveyed in the UK supported assisted dying for those suffering from terminal illnesses.
Furthermore, forty-six per cent believed disability rights groups should remain neutral on the issue of assisted dying, while thirty-six per cent believed disability rights groups should support assisted dying. Only 8 per cent believed disability rights groups should oppose assisted dying.
As it happens, the 86 per cent of disabled Britons supporting assisted dying corresponds roughly to the support in the wider British community, which has been well above 80 per cent for many years.
In response to my query, Tesoriero acknowledged that the Human Rights Commission “has not polled the disabled community in New Zealand on the topic of assisted dying” — although she believes that is not “relevant to the question being asked in the referendum which is specific to the End of Life Choice Act”.
She argues that the Act should have included further safeguards and that her “arguments are not against the concept of assisted dying” but rather the provisions of “this specific Act”.
Before the bill was passed in Parliament last November, however, it had been heavily amended to answer the concerns she and others expressed over what they saw as insufficient protections for the disabled. As a result, the Act that voters are being asked to approve or oppose at the referendum restricts an assisted death to the terminally ill and explicitly rules out disability alone as a ground for eligibility.
Extraordinarily, Tesoriero told Campbell these major concessions were merely a “slight improvement” and argued the Act still needed to be tightened.
When I asked if she had “any reason to believe the numbers would be any different here in New Zealand” to the 86 per cent support registered in Britain, she replied: “The vast majority of disabled people who have contacted me are not in favour of this Act… Of course, some disabled people will be in favour of assisted dying and even of this Act. We are not a homogeneous entity, but my concerns are about the flaws in this particular legislation that New Zealanders are being asked to vote on.”
So, Tesoriero can’t have any idea of how many disabled people want the Act to come into force and how many will vote for it in September. Her correspondents are a self-selecting sample and therefore can’t be said to constitute a scientific poll — which means it is quite likely that assisted dying is every bit as popular among the disabled in New Zealand as it is among the general population (just as it is in the UK).
When John Campbell suggested Tesoriero’s stance on assisted dying could be viewed as being “condescending” towards disabled people, she was adamant that she was dedicated to choice: “I spend every day in my role championing for choice and control in the lives of disabled people.”
She acknowledged she wasn’t worried whether capable people like Patston could stand up for himself if the law is ratified but was concerned for those less capable.
Patston wasn’t having a bar of that argument. He made it clear that, in his opinion, Paula Tesoriero’s real responsibility as Disability Rights Commissioner is “to make sure that people who don’t have as much autonomy or control over their lives are safe… rather than taking away choice from the whole of New Zealand.”
Graham Adams is a journalist, columnist and reviewer who has written for many of the country’s media outlets including Metro, North & South, Noted, The Spinoff and Newsroom.
Monday, 6 July 2020, 12:30 pm
Press Release: ACT New Zealand
Source: Scoop Media
“It’s disappointing that the Disability Rights Commissioner has continued to politicise her role and is promoting misleading information prior to the End of Life Choice referendum,” says ACT Deputy Leader Brooke van Velden.
“This morning, Paula Tesoriero appeared on Breakfast in her role as Disability Rights Commissioner to voice personal opposition to the End of Life Choice Act and misrepresented the clear safeguards within the legislation.
“While laying out her concern that there is no 'bright line' test between disability and terminal illness, Ms Tesoriero failed to acknowledge the sections of the legislation that protect people with disabilities who want no part in assisted dying, and safeguards against coercion.
“Section 5(1)(d) of the End of Life Choice Act states the person must be 'in an advanced state of irreversible decline in physical capability.' This means that a person cannot access assisted dying because of their particular level of capability or disability, which is different for each person, but that they must be in an advanced stage of a process of declining or significantly getting worse.
“The legislation clearly states that a person is not eligible for assisted dying just because they have a disability of any kind (5(2)(b)), they must also have a terminal illness likely to end the person’s life within 6 months (5(1)(c)).
“This legislation is clearly for people suffering greatly at the end of life, not those with disabilities.
“Discussing coercion, Ms Tesoriero cited a Canadian case of a patient’s concern that their doctors raised assisted dying as an option for their care, while failing to mention that raising assisted dying as a treatment option is perfectly within Canadian law but wouldn’t be here. The Canadian law is safe but the End of Life Choice Act is even stricter and explicitly forbids a doctor or nurse from raising assisted dying as a treatment option (Section 10).
“This legislation went through the most rigorous process in parliamentary history. It is robust and safe.
“The Disability Rights Commissioner has a duty to remain impartial and uphold the level of integrity and conduct we expect from all other state servants who fall under the State Service Commissioner’s mandate, especially so during the election period.”
We are a group of 23 doctors from a range of specialities. Our collective experience has convinced us that assisted dying should be a choice open to terminally ill New Zealanders. That’s why we’re voting YES in the End of Life Choice referendum on the 19 September - and ask you to do the same.
We support the End of Life Choice Act because:
1. We do not want patients to suffer against their wishes at the end of life. Even with the best hospice and palliative care, a small number of patients suffer unbearably as they die. This law will give those who want it the option to request life-ending medication and decide for themselves when their suffering has become unbearable.
2. Research has confirmed that in the jurisdictions where laws have already been passed to allow assisted dying, they are working well; in some cases assisted dying is comfortably integrated with hospice and palliative care to give seamless care. There is no evidence of abuse of the elderly/disabled/ vulnerable. Trust in doctors has risen; suicides have not. NZ’s Act is one of the strictest in the world, with a clear and thorough process, multiple safeguards and automatic review systems.
3. The majority of New Zealanders support choice for terminally ill people at the end of life. What’s more, a majority of MPs in our Parliament support this law coming into force in New Zealand. Many doctors and nurses support the End of Life Choice Act becoming law and the New Zealand Nurses Organisation is to be commended for changing its position statement to reflect this.
4. Our careers have shown us that New Zealanders value their autonomy and this is no different at the end of life. Many terminally ill patients want to have control over the timing and manner of their death and would take great comfort in knowing that they could ask for life-ending medication if they felt their suffering became unbearable.
5. Suicide is legal in NZ and the Office of the Chief Coroner attributes 5-10% of the deaths they review, to rational dying adults ending their lives to end their suffering. This is about one per week. This type of suicide is expected to decrease with the availability of legal assisted dying and in this respect the NZ Act offers increased safety.
6. A good death can occur where the terminally ill, mentally competent, and badly suffering patient is given medical help to die at their request. Their loved ones can be with them and ceremonies can be held as wanted while they are still awake. Many describe them as beautiful occasions. We want terminally ill New Zealanders to be able to die on their own terms.
Dr Jack Havill, Retired Intensive Care Medicine Specialist (email@example.com for correspondence); Dr Elizabeth Smales; Grief Counsellor; Palliative Care and Hospice Physician; Dr Gary Payinda; Emergency Medicine Specialist; Dr Carol Shand; Retired General Practitioner; Sexual Health Physician; Dame Margaret Sparrow; Retired Sexual Health Physician; Dr Rowan Stephens; Retired General Practitioner; Dr Jay Kuten; Retired Psychiatrist; Dr James Davidson; Retired Pathologist; Dr David Robins; Retired General Practitioner/Anaesthetist/ Obstetrician; Dr John Duncan General Practitioner; Dr Marion Leighton; General Physician (specialist experience in palliative care); Dr John Musgrove; Retired General Practitioner; Dr Stanley Koshy; General Practitioner; Mr Frank Kueppers; Uro-Oncologist; Specialist Surgeon; Dr Alastair MacDonald; Retired Renal Physician; Dr Barry Suckling; Retired General Practitioner; Dr Jim Vause; General Practitioner (past President of RNZCGP); Dr Stuart Tiller; General Practitioner; Dr Alison Glover; General Practitioner; Dr John Bonning; Emergency Medicine Specialist; Mr John Harman; Retired General Surgeon (set up St Marks Breast Centre 10 years ago); Dr Jonathon Baskett; Retired Geriatrician; Dr Miles Williams; Cardiologist;
(The above doctors are a cohort of a larger group from Doctors for EOLC)
No one could have predicted when David Seymour's End of Life Choice Bill was passed by Parliament last November that the referendum required to bring the legislation into force would be held against the backdrop of a deadly global pandemic.
David Seymour is the MP responsible for the bill. Photo: RNZ /Dom Thomas
Since then, the mounting tally of casualties around the world has thrust death and dying into mainstream discussion in a way little else has during most of our lifetimes. If death and dying were once - as the cliche has it - taboo subjects, they certainly aren't now.
For several months, we have witnessed scenes of overcrowded hospitals in Italy and Spain, body bags in New York, and the Prime Minister's warning of "tens of thousands" of deaths in New Zealand. In short, we have been forced to confront our own mortality.
That has meant uncomfortable discussions of topics usually left unspoken - including triage and how cancer patients, among others, might be denied access to our meagre supply of ventilators if hospitals were overwhelmed and doctors had to choose to treat only those with the best chance of surviving Covid-19.
The practice - and necessity - of triage has become a topic of intense debate. Many will have become suddenly aware during the pandemic that, in an emergency, doctors can decide whether you will get the opportunity to live, or die. Yet doctors are still not legally allowed to help you, at your request, to avoid the last stages of suffering from a disease such as cancer when you are already dying and you want to shave a few days or weeks off the end of your life.
How all this will affect the referendum result is anyone's guess but it is certainly not uncommon for cataclysmic events to spur progressive change. The massive contribution by women during the First World War, for instance, helped give women the right to vote across the Western world - including in Canada, Russia, Germany, Poland, Austria, the Netherlands and the United States.
Supporters of assisted dying will hope very strongly that the pandemic will have boosted the groundswell for legislative change in New Zealand - pushing the usual high level of support even higher.
A majority of the public have consistently supported some form of assisted dying for decades. Jessica Young, a PhD candidate at Otago University, investigated New Zealanders' attitudes over 20 years to euthanasia and assisted dying. Her research showed that, on average, across all surveys in that time, 68.3 percent of people supported assisted dying and 14.9 percent opposed legislation, while 15.7 percent were neutral or unsure.
After attempts to legalise assisted dying through private member's bills failed in 1995 and 2003, last year Parliament finally reacted to this sustained public pressure and passed the End of Life Choice Bill sponsored by David Seymour - with the proviso that the legislation needed to be ratified by a binding referendum in order to come into force.
As a result of last November's vote, the End of Life Choice Bill became the End of Life Choice Act 2019. It is no longer a work in progress. The Act - passed by a majority of MPs 69-51 - is now in a form they consider safe and suitable to be put to the public for ratification.
It came as a surprise therefore to hear John Campbell on TVNZ's Breakfast last week ask Richard McLeod, a lawyer opposed to assisted dying, whether the "bill" could be "redrafted" to meet McLeod's objections.
McLeod rightly responded: "It's too late for that. New Zealanders are now being asked to vote [at the referendum] on a piece of legislation."
For anyone inquisitive about the Act's status during the interval between its passing in Parliament last November and the referendum in September, David Seymour sums it up like this: "To be perfectly correct, the End of Life Choice Act is a law. It has been signed by the Governor-General on behalf of the Queen, it has Royal Assent.
"However, all laws have a commencement clause. Some say 'upon receiving Royal Assent.' Others say 'x months after receiving royal assent' - usually if there is an implementation program to be put in place before the law can operate.
"This law has a particularly complex commencement clause that talks about the conditions under which the act 'comes into force' and that is dependent on a referendum result. So it is a law, but it will not come into force until such a time as a referendum is passed to say so."
Otago University law professor Andrew Geddis puts it this way: "The legislation is an Act of Parliament, but is not yet the law of New Zealand as it only enters into force upon a majority vote at the referendum (according to the Act's own terms)."
In short, it is a law but not yet the law.
In answer to Campbell's clumsy query about "redrafting" the "bill", the fact is that the bill Seymour originally lodged in the members' ballot five years ago has already been heavily redrafted to accommodate the many and varied objections of critics such as Richard McLeod - most of which centred on fears that the vulnerable needed to be better protected against coercion.
Before the bill was passed, some of its major clauses were dropped entirely and the Act - as it is now - restricts eligibility to adults who are dying with six months or less to live; have significant and ongoing decline in physical capability; are experiencing unbearable suffering that cannot be eased; and are capable of making an informed decision.
The Act explicitly rules out eligibility solely on the grounds of mental illness, disability or advanced age.
It is now less than three months before the referendum on 19 September when voters will be asked to simply answer "Yes" or No" to the question: "Do you support the End of Life Choice Act 2019 coming into force?"
Inevitably, the plans of those campaigning for and against assisted dying in a last-ditch attempt to sway voters to their side have been severely disrupted by the pandemic.
Euthanasia-Free NZ executive officer Renee Joubert has said Covid-19 has forced her organisation to not only cancel conferences and events but it has also hampered the ability to fundraise and enlist volunteers as financial hardship bites.
Mary Panko, president of the End of Life Choice Society, has experienced similar problems with fundraising and campaigning. She says her society had to "cancel all weekend markets where we had been distributing information about the Act and recruiting online supporters".
Furthermore, she said: "We had two speakers lined up - Dr Nick Carr, from Melbourne, who undertakes assisted dying, and Beverly (Bev) Young who is a retired palliative care supervisor from Brisbane. Dr Carr was going to be our primary speaker at our planned AGM in Wellington but, of course, this has now become a virtual event."
Nevertheless, the campaigning on both sides has begun in earnest with major media players - including RNZ, TVNZ and Mediaworks - giving increasing space and airtime to the topic.
Willingness to call out fake news is clearly going to be vital to a fair debate. During Richard McLeod's joust with palliative care expert Dr Libby Smales on Breakfast, he used a scenario of an imaginary Māori man - Mr Tamati, living in the Far North, "who has just been diagnosed with lung cancer" - to demonstrate how the legislation would be used.
McLeod: "So his doctor says to him: 'Mr Tamati, these are your options... There is a shortage of palliative care services in Northland - sorry about that - and Pharmac has just denied you Keytruda so we can't keep you alive for many years.
"Hey, but we've got this new option - it's called sticking a lethal injection in your arm! How does that sound - because after all, Mr Tamati, it's your life, your choice.'"
In response, Dr Smales, said: "It's not possible for a GP to raise the issue of choosing medical aid in dying - it has to come from the person themselves... I am not a lawyer... but actually, Richard, you are not telling the truth."
Fortunately, voters who are not familiar with the details of the bill can go directly to the government website that explains in clear and succinct language what the End of Life Choice Act 2019 entails, including who is eligible and who is not, and exactly how the process works.
So anyone unsure whether McLeod was telling the truth could check for themselves under the heading "Making Sure the Choice Is Freely Made". There they would read this unequivocal statement: "A health practitioner is not allowed to suggest that a person consider assisted dying when providing a health service to them."
In short, Dr Smales was right: The End of Life Choice Act specifically prohibits a doctor from suggesting assisted dying as an option; the request has to come from the patient.
The website's summary of what the Act requires for someone to be able to make an informed choice includes that they are able to "use or weigh up information about assisted dying when making their decision".
The advice is just as appropriate for voters - and the website is an excellent place to start.
*Graham Adams is a journalist, columnist and reviewer who has written for many of the country's media outlets including Metro, North & South, Noted, The Spinoff and Newsroom.
This pieces was originally published in Democracy Project and is republished with permission, under a Creative Commons CC BY-ND 4.0 license.
The campaign for a Yes vote at this year’s referendum on legalising medical aid in dying has been boosted by the launch of a new organisation called Yes for Compassion, dedicated to educating voters on the issue.
The End-of-Life Choice Society, which has campaigned for a law change for more than 40 years, welcomed the new group that is backed by many prominent New Zealanders, including Sir Geoffrey Palmer, Dame Margaret Sparrow, Dame Iritana Tǡwhiwhirangi and Professor Andrew Geddis.
Matt Vickers, former husband of Lecretia Seales, is supporting the group and has posted on its website www.yesforcompassion.org.nz a moving letter he wrote to his late wife this month on the fifth anniversary of her death.
New Zealanders will vote at the September 19 general election on the End of Life Choice Act passed by Parliament last December, which will allow terminally ill patients to get a doctor’s help to end their suffering.
Dr Libby Smales, a former hospice doctor and spokesperson for Yes for Compassion, said it was formed to ensure New Zealanders have all the facts they need to make an informed yes decision. “Some of us still suffer unbearably as we die,” she said. ”Passing this Act will give dying Kiwis a choice. It will allow us to choose to end suffering that is unbearable in the final stages of life and to die peacefully.”
Dr Mary Panko, President of the End-of-Life Choice Society, said: “Reliable opinion polls over the last 20 years show that an average of 68.3% of voters want a law change.
“One-third of doctors surveyed in 2018 supported it and others say they will join them once the new law is enacted. And 67% of nurses favoured it in Auckland University research in 2017.”
The Yes for Compassion website includes two videos of New Zealanders living with terminal illnesses who urge fellow Kiwis to vote Yes for them. It invites people to make their own short videos explaining why they support end of life choice.
For further information:
Dr Libby Smales firstname.lastname@example.org 021 326 383
Dr Mary Panko email@example.com 027 419 7802
Peace. Closure. Relief.
These are the words medical oncologist Dr Cameron McLaren uses to describe the experience of helping terminally ill Victorians end their lives under the Voluntary Assisted Dying (VAD) scheme.
Dr McLaren says: “The cases I’ve been involved in have been overwhelmingly positive. They've relieved suffering and given the family a moment of closure to say goodbye to their loved one.”
We all deserve the right to go gently – with love and dignity, not fear and distress.
Since VAD legislation passed in Victoria, Dr McLaren says he has seen an enormous shift in his patients’ anxiety. Not everyone chooses a legal assisted death, but Dr McLaren says the palliative effect of having the right to do so is profound.
“The partner of one patient told me, ‘He perked up so much. He feels he's being listened to and respected. He has hope he won’t be forced to live through something he doesn't want’.
“It's a great relief to people who are facing the great unknown. Not knowing how you will die is very frightening. Now people have the comfort of knowing they can have some control.”
Lecretia Seales with her husband Matt Vickers in 2011, a few days after she was diagnosed with brain cancer. Photo / supplied, file
Today marks the fifth anniversary of the day you were taken from me, and the day you received the ruling you would not have a choice about how you would die. So much has happened since then that you do not know about and that I wish you had been able to see. You will never know how much of a difference you made. And you'll never know how much I've missed you.
I got married again like you hoped I would. It was difficult for a while, opening up to someone else after losing you. But I did find someone and she is extraordinary. You would like her. We have a daughter now, too. It hurts to know how much you wanted to have a child with me, but I think you'd still be happy for me now if you could see me. I hope you would be proud of the man I've become.
READ MORE »
By Jessica Young
The University of Otago's Jessica Young interviewed 14 terminally ill people around NZ about what a good death meant for them. Here she makes a case for assisted dying based on what they told her.
Covid-19 has brought death to the forefront of our minds and prompted us to think about what a good death is in these new circumstances.
Until now, most people haven’t been confronted with their own mortality much, despite death being the common denominator that unites all living beings. It doesn’t end there; dying is on the agenda of this year’s election.
New Zealanders are going to vote whether to ratify the End of Life Choice Act at the election. If the referendum passes, it would allow a person with a terminal illness with a life expectancy of less than six months, who is in an advanced state of irreversible decline in capability, is experiencing unbearable suffering and is of sound mind, to make a voluntary request for a choice over how and when they die.
One of the major concerns with assisted dying is that people who have chosen to die may have gone on to live longer or change their minds about dying at that time. From my research with dying people, what I found was that they all said they would know if and when the time was right for them to choose to die. They thought they can, and should, be trusted to know what’s right and wrong for them when it comes to end of life decision-making.
I was fortunate to interview 14 New Zealanders from around the country, of various ages, backgrounds and beliefs, who have a limited life expectancy due to illnesses such as cancer, chronic lung disease, auto-immune disease, and motor neurone disease. These people have given a lot of thought to their own mortality and what a good death means to them.
They wanted the option of assisted dying to guarantee they wouldn’t suffer at the end of their lives. “When there is nothing left but suffering, I want the choice,” said one man with motor neurone disease. Assisted dying shouldn’t be confused with wanting to die or suicide. These people were already dying. As one woman dying of cancer put it, “I just want to hang in there until I can’t, and then I want to have a peaceful end”.
The people I interviewed have been through so much already – multiple treatments, intense pain, nausea, surgery, declining function, trouble breathing, plus shrinking physical and social worlds. The interviewees said assisted dying was the compassionate choice. As an upside of these difficult experiences, people came to know themselves in a deeper way and what they could tolerate. “You should have the choice of when enough is enough,” another man with motor neurone disease said. Many emphasised they were of sound mind to make this decision.
What makes each person’s life worth living, their purpose, their own version of a good life and a good death, and the important bit in between - dying, is unique. To my interviewees, this means we should each be able to decide what is right for us in accordance with our views on life, so long as it doesn’t harm anybody else. They expected tight regulations to make sure the system was safe for everyone. Deciding if and when to die is not a decision the dying will make lightly.
My views on access to assisted dying are that it should only be made available to terminally ill people who have freely made this decision, have access to, or at least offered, the option of care that meets their needs, and who have a sustained wish to hasten their death.
Motivated by compassion, I support terminally ill people who want the option to hasten their death to relieve their suffering. On behalf of the people I interviewed, I encourage you to do the same. Having looked closely at the international data, I’m confident a system, based on the End of Life Choice Act, can be designed to ensure assisted dying can be managed safely.
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