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Source: The Spinoff
Alongside the general election of 2020, New Zealanders will be asked to vote on the End of Life Choice bill, which allows voluntary euthanasia for those suffering terminal illnesses. Here’s The Spinoff's bumper question-and-answer special on what it involves.
What is the exact question we’ll be voting on?
“Do you support the End of Life Choice Act 2019 coming into force?”
That’s it. To be a worthwhile gauge of public opinion, referendum questions have to be worded as neutrally as possible. So the question itself is a simple yes or no about a specific piece of legislation. You can read the full legislation here.
Who got the legislation through parliament?
The End of Life Choice bill was largely driven by Act MP David Seymour, who has advocated for this law since the 2014-17 term of parliament.
Why is the public voting on it, if the legislation already exists?
Over the last term of parliament, MPs in select committees and the full chamber of parliament worked on this bill, and eventually got it to a point where a majority were comfortable with it passing – providing it also went to a referendum. This clause was brought in as a Supplementary Order Paper by NZ First MP Jenny Marcroft, in exchange for her party’s support for it to proceed. Without that, it may have failed to pass through parliament.
In general terms, MPs did not vote for or against the End of Life Choice Act along party lines. Instead, it was treated as a conscience issue – in other words, MPs had to decide for themselves whether they supported or opposed it. At the third and final reading of the bill, the margin in favour was 69-51.
If the referendum passes, will anyone be allowed to choose assisted dying?
No. Under the legislation, there are strict conditions – all of which must be met. They are:
Additionally, a person would not be able to choose assisted dying if their reason for the choice is mental illness, nor if their reason is because of a disability, nor if their reason is simply that they’re old.
What exactly is assisted dying?
This is defined as a medical professional giving medication that will relieve suffering by bringing on death. The doctor would first have to assess whether they are eligible, and a psychiatrist would also need to give their assessment. If that happens, then a date and time is set for the person to be given their fatal dose of medication. They can change their mind at any time of this process.
How would the medication be administered?
There are four options:
Can a decision on assisted dying be made on behalf of someone else?
Under the legislation, no. You could not, for example, make a choice for assisted dying on behalf of a grandparent with severely advanced dementia. A medical professional must also step in and stop the process if they feel someone is pressuring a person to choose assisted dying.
What about a family member denying permission for someone to choose assisted dying?
Again, no. A person does not have to discuss their choice with their family, one way or the other. It can only be the person’s choice alone.
Say severe dementia runs in a person’s family. Can I write a will or other legal document that would allow me to make a decision in advance to choose assisted dying, if I cognitively decline to a pre-agreed level?
No, the decision must be made at the time, by a person of sound mind and judgement. If a person had experienced such cognitive decline that they were no longer able to make this judgement, then there would be no way to be sure that what they declared in advance was still their choice.
Could a doctor suggest to someone that they consider assisted dying?
No, as that would contravene the choice being freely made.
If I chose assisted dying, would that forfeit my life insurance policy?
No. For all legal purposes, a person who chooses assisted dying would be considered to have died of a terminal illness – and after all, you can only choose assisted dying if you have been diagnosed with a terminal illness.
Can we be absolutely sure that nobody would ever choose assisted dying because of pressure from another person?
While there are safeguards in place with the legislation, this is one of the main arguments raised by opponents of the law change. The concerns have been raised by advocates of the elderly, and people with disabilities, on the grounds that at present, some view these people as a “burden” – either explicitly or implicitly. For example, Disability Rights Commissioner Paula Tesoriero last year said that those in the sector were “overwhelmingly opposed” to the legislation, because some patients may feel coerced by their families.
Former prime minister Bill English is another opponent of the law change who has raised this point. He wrote an op-ed on Stuff saying that even supporters of assisted dying generally should be wary of this particular legislation, because the protections were insufficient. “Talk to any doctor and they will tell you it is virtually impossible to detect subtle emotional coercion, and even overt coercion, at the best of times. Yet many people will be ‘signed off’ by medical practitioners with little or no understanding of the patient’s family or social history, let alone medical history,” he wrote.
Is there also religious opposition to the law change?
Some faiths are heavily opposed to assisted dying. An open letter to MPs was signed by leaders of Catholic, Baptist, Presbyterian, Anglican and Lutheran churches, the Federation of Islamic Associations and the Salvation Army.
What about tikanga Māori?
As with pretty much every other issue under the sun, there is no singular view within te ao Māori on assisted dying. Radio NZ’s Meriana Johnsen had an excellent piece last year which explored the complexities and different opinions on the matter.
What are the arguments in favour of the law change?
The primary argument in favour of this law change centres around compassion for the dying. David Seymour set out his reasoning on the website LifeChoice, saying it was about giving people the freedom to choose to end their own lives with dignity, saying it was both legally and morally the right thing to do.
“The motivation for this bill is the very real anguish faced by people with terminal illness, as they anticipate the prospect of intolerable suffering, and the indignity of the final few days and weeks of their lives. While pain can be ameliorated somewhat, the suffering and indignity of that final period of life remains a profound concern to many people.”
Additionally, he argued that total prohibitions on assisted dying left terminally ill people facing much worse choices than that offered by his proposed law change. “A person facing this prospect has two options: she can take her own life prematurely, often by violent or dangerous means, or she can suffer until she dies from natural causes. The choice is cruel.”
Is the medical community in favour of this law change?
Many medical professionals are not in favour. More than 1000 doctors signed an open letter against the law change, saying that assisted dying was unethical. While they supported the right of terminally ill people to refuse treatment if they so chose, “crossing the line to assist a person to die would weaken the doctor-patient relationship.” Subsequent polling carried out by Horizon research and published in an Act Party press release found that 37% of doctors were in favour of a law change, while 52% were against, with the remainder unsure.
Of those doctors who are against assisted dying, can they object to providing it as a service?
No health practitioner would have to carry out a request for assisted dying if they had a conscientious objection towards it. However, if a patient requests assisted dying from a doctor, they must both inform the patient of their conscientious objection, and also inform the patient that they have the right to ask for the name and contact details of a replacement doctor.
What about polling of the general public? After all, it is a referendum.
Currently, pretty much all polls show a majority of the public is in favour of changing the law to make assisted dying legal. The numbers vary from poll to poll, but the general outline is the same. On the most recent survey carried out by Research NZ in July, 64% of respondents were in favour, with 18% not in favour. The remaining voters were undecided.
Within that, there were several trends that had been observed from surveys conducted in March, and December last year. The number of respondents strongly in favour had gone down, compared to the number of respondents somewhat in favour. However, the total number of people against it had also gone down.
If I’m voting in the general election, do I have to also vote in this referendum?
No, voters can also choose to abstain from voting on this question.
New Zealanders have an important opportunity to think about what they would want for themselves and others at the end of life, writes Phillipa Malpas.
Although we know we will die one day, it’s probably true that most of us don’t give much thought to how we might die and what a good death entails.
If asked many people would probably say they hope they will go to bed when they are old and simply not wake up. If pushed to consider this, some might add that a good death for them would include being able to say goodbye to loved ones, being able to put one’s affairs in order, and not suffering unduly during the dying process.
For many individuals, being able to discuss assisted dying with their doctor is a legal choice they want so that they can make informed decisions about what is right for them and their whānau. Being able to discuss with their doctor or nurse practitioner the context of their dying may result in them requesting an assisted death at some imminent point in time. For other individuals, such a choice is not something they would contemplate for themselves or for others.
Over the past two decades, four parliamentary Members’ Bills have proposed various frameworks that would permit doctors to discuss, and provide assisted dying under certain circumstances (Death with Dignity Bill 1995 and 2003, and the End of Life Choice Bill 2012 and 2019). At the same time, we have witnessed many individuals who have called for a change in law to allow assisted dying because they wanted a choice about how and when they die. Individuals such as Lecretia Seales, John Pollock and Margaret Page.
At the general election in September, voters will be asked to consider whether they support the End of Life Choice Act 2019 in a referendum that will ask ‘Do you support the End of Life Choice Act 2019 coming into force?'
Voters will answer yes, or no. Although the Government has already passed the End of Life Choice Act 2019 (69 votes to 51), it cannot come into legal force unless more than 50 percent of voters say ‘yes’ in the referendum.
So, what questions do you need to consider in respect of the referendum? What do you need to know to cast an informed vote? The following may help:
What is the End of Life Choice Act 2019 calling for?
The Act will provide people with a terminal illness the option of requesting assisted dying from their doctor or nurse practitioner. This may entail providing an eligible person with the lethal means to end their suffering and their own life, or the administration of a lethal medication that will end their suffering and cause the person’s death. These practices are termed ‘assisted dying’ and are currently illegal in Aotearoa New Zealand. A number of countries and jurisdictions permit assisted dying, including the Netherlands, Belgium, Luxembourg, Switzerland, Canada, Colombia, many states within the US, and most recently our neighbours in Victoria, Australia.
Who will be able to access assisted dying if the Act was legally available?
Strict criteria will restrict who can access assisted dying. They include that the person must be aged 18 years or older; be a citizen or permanent resident of Aotearoa New Zealand; suffer from a terminal illness for which they have a life expectancy of less than six months; be experiencing significant and ongoing decline in physical capability; be suffering unbearably which cannot be eased; and be able to make an informed decision about assisted dying.
Who supports a change in the law?
Evidence from a number of studies and polls suggests that many Kiwis, including doctors and nurses, support assisted dying for individuals who are terminally ill.
What does international research find?
A study of Dutch and Belgian data (1947-2016) in the Journal of the American Medical Association (JAMA) concluded that “euthanasia and physician-assisted suicide [assisted dying] are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices”.
In Jessica Young’s recent study of 14 New Zealanders who were dying, and their whānau, she concluded that, having the availability of an assisted death if they needed it, “would bring them some personal control over dying because there was a risk they would die badly. While the End of Life Choice Act allows doctors to have the final say if someone meets the strict criteria for assisted dying or not, the participants thought that being able to choose the timing and the way they died was important. They saw the tight controls on assisted dying as a good thing, they wanted it to be safe for everyone.”
New Zealanders now have an important opportunity to think about what they would want for themselves and others at the very end of life.
Disclosure: Phillipa Malpas is on public record as supporting a change to the law that would allow assisted dying in qualified circumstances, and with appropriate safeguards and accountability processes in place. She is a member of the End of Life Choice Society of NZ.
New Zealanders will be able to have the final say on whether assisted dying should become law in September’s election.
Last November, Parliament passed the End of Life Choice Act by 69-51 votes, sending it to a referendum and putting the decision in the hands of the public.
Here we break down what assisted dying is, what the End of Life Choice Act proposes, and how the referendum will work.
New Zealand lawmakers passed a bill on Wednesday that would legalize euthanasia, paving the way for the public to vote on the issue in a referendum next year.
WHAT IS ASSISTED DYING?
Assisted dying, or euthanasia, is defined in the End of Life Choice Act as a doctor or nurse practitioner giving a person medication to relieve their suffering by bringing on death, or, the taking of medication by a person to relieve their suffering by bringing on death.
In the Act, “medication” means a lethal dose of the drugs used for assisted dying.
To be eligible for assisted dying under the Act, a person must be suffering from a terminal illness that is likely to end their life within six months.
They must have significant and ongoing decline in physical capability, and experience unbearable suffering that cannot be eased.
Crucially, they have to be able to make an informed decision about assisted dying – showing they can understand and remember information about it, and have the ability to communicate this decision in some way.
A person would not be eligible if the only reason they give is that they are suffering from a mental disorder or mental illness; have a disability of any kind; or because of their advanced age.
A health practitioner is not allowed to suggest that a person consider assisted dying while providing a health service to them, it must be a call made by the patient.
On September 19, New Zealanders will vote in not just the general election, but two referendums – including whether assisted dying, or euthanasia, should be passed into law.
WHEN IS THE REFERENDUM?
The euthanasia referendum is one of two being carried out on general election day, Saturday, September 19.
The other will ask people if they support the Cannabis Legislation and Control Bill.
You will be given a voting paper for the election and a voting paper for the referendums.
If you’re in New Zealand, you will be able to vote when advance voting starts on September 5.
If you’re overseas at the time, you can vote from September 2.
You will get the opportunity to answer 'Yes’ or ‘No’ on election day.
WHAT IS THE QUESTION?
The voting question being asked is: “Do you support the End of Life Choice Act 2019 coming into force?”
You can choose one of two answers:
Yes, I support the End of Life Choice Act 2019 coming into force.
No, I do not support the End of Life Choice Act 2019 coming into force.
“Coming into force” means the Act would start operating as law in New Zealand, 12 months after the final result is announced.
A person would not be eligible for assisted dying simply because they are elderly. People must be suffering from a terminal illness that would end their life within six months.
WHAT WOULD THE BILL ALLOW?
If it does start operating as law in New Zealand, eligible people could start the assisted dying process with their doctor.
In a nutshell, two doctors – the person's doctor and an independent doctor – must agree the patient meets the criteria, including being able to make an informed decision about assisted dying. If either is unsure of the person’s ability to make that decision, a psychiatrist needs to assess the person.
If the person is eligible, they choose a method, date, and time for taking the lethal dose of medication.
At the time the person has chosen, the doctor or nurse practitioner must ask the person if they still choose to take the medication before it is given. The doctor or nurse practitioner must remain with them until they die.
If they change their mind, the medication is taken away.
ACT MP and proponent for the End of Life Choice Bill, David Seymour, at its third and final reading in November 2019.
HOW WOULD IT BE POLICED?
If the law is passed, a number of roles and agencies will be set up within the health sector to oversee the operation of the Act.
This would include the Support and Consultation for End of Life in New Zealand (SCENZ) group, established by the Director-General of Health.
SCENZ would be responsible for making and maintaining a list of doctors, psychiatrists and pharmacists willing to take part in the assisted dying process.
It would also be responsible for preparing standards of care, advising on the required legal and medical procedures and providing practical assistance around the administration of medication.
If the Act became law, Ministry of Health Director-General of Health Dr Ashley Bloomfield would be responsible for setting up key roles to oversee the law.
An End of Life Review Committee, made up of a medical ethicist, a doctor specialising in end-of-life care and one other health practitioner, would also be appointed by the minister of health.
The committee would consider reports provided by the doctor or nurse practitioner about the assisted death of a person, report to a registrar – a person within the Ministry of Health, appointed by the Director-General – on whether the information complies with the requirements of the Act.
The registrar would check the processes of the Act have been complied with; establish and maintain a register of approved forms and reports received from the review committee and made to the minister.
The registrar would receive and refer complaints to the appropriate authority, such as the Health and Disability Commissioner or Police.
They would also be responsible for providing annual reports to the health minister, who would present them to Parliament.
The majority of New Zealanders will cast their votes on September 19, but advance voting and overseas voting start much earlier.
HOW DOES THE VOTE WORK?
Casting a vote in the referendum is simple.
On your voting paper, vote by placing a tick next to your answer - either ‘Yes’ or ‘No’ to each referendum question.
WHEN WILL WE KNOW THE OUTCOME?
Although voting takes place on election day, referendum votes will not be counted that night.
Preliminary referendum results will be released by the Electoral Commission on Friday, October 2.
The final, official results will be released on Friday, October 9.
The Act, if passed into law, would allow people with a terminal illness to relieve their suffering through assisted dying.
WHEN WOULD IT COME INTO EFFECT IF PASSED?
If more than 50 per cent of New Zealanders vote “Yes” in the referendum, the End of Life Choice Act will come into force 12 months after the final votes are announced.
If more than 50 per cent of people vote “No”, the Act will not become law.
If the majority vote in opposition to the Act – or there is a tie – and another referendum is not held, the Act will expire on November 16, 2024, five years to the day after it received royal assent.
OPINION: If by “right to die with dignity” we mean the “right to reject deathbed torture” then yes, I believe we should have that right.
The Health select committee examining the views of Kiwis on assisted dying in 2017 and the Justice select committee that received submissions as part of parliamentary process in 2019 were both presented with multiple stories of horrifying deaths in our country.
In some cases, the dying experience their death as a torture through which they are dragged due to the lack of a merciful legal option to avoid it. Their families are wracked by the suffering of their loved ones.
These submissions came from ordinary people up and down the country – stories from hospices, from hospitals, from rest homes. It appears there is no setting in NZ that is immune from the scourge of suffering death, not even in top class palliative care.
I have suffered such a death in my family. Perhaps you have too?
For that reason, I attentively followed the passage of the End of Life Choice Act 2019 from its introduction in June 2017 through to obtaining Royal Assent in November 2019. It went through all the usual parliamentary processes in the glare of the media. The time allowed for public submissions was extended from the usual three months to nine months. MPs who make our laws also made submissions. In the end, parliament voted 69:51 to pass the End of Life Choice Act 2019 as it is now.
No piece of legislation in the history of the NZ parliament has been through more thorough scrutiny. Parliament has done its job and now hands us back this law for our approval or rejection at the referendum.
To imagine it can now be “changed” is ignorant. The law does not allow any further change at this point. The End of Life Choice Act 2019 will stand or fall exactly as it is on 19 September. It is Yes or No or abstain from voting on this topic. See www.referendums.govt.nz
Parliament has done its work. It has balanced the need of the dying who meet certain additional criteria to legally escape their torment against the desire of all of us to ensure that only that cohort accesses a requested assisted death. Enablement balanced by safety.
Should Kiwis have the right to die with 'dignity'?
Share your thoughts with us
Every year in New Zealand, many death-hastening actions take place without the regulation or oversight that the End of Life Choice Act 2019 would provide. These include decisions by patient or family to switch off life support that will inevitably end in swift death and decisions by patient or family to reject medical interventions to extend terminal life, thereby leading to earlier death. They are perfectly legal decisions. Never do we hear a suggestion of “coercion” or “abuse” in these everyday situations.
Yet they are ripe for exploitation, unregulated as they are. Who protects the patient against such a possibility? One single doctor. No specific regulation governs these decisions or their execution but it seems we, as a society, are perfectly satisfied with this status quo.
It is therefore ridiculous to imagine danger when the additional safeguards of proper regulation and a two-doctor process are added as specified in the Act. In fact, it defies logic.
NZ law should be based on fact, not fanciful conjecture. The fears related to the introduction of medically assisted dying have no basis in fact. They are not observable anywhere in the world where assisted dying is practiced, covering some 200 million people. If our “team of 5 million” votes Yes, then 205 million people will have the right to avoid unwanted deathbed torture.
Make it so.
Ann David is a member of the End of Life Choice Society NZ, whose objective is to have assisted dying legalised in NZ.
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 (firstname.lastname@example.org 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.
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