"This right belongs to me and none other," said Wellington lawyer Lecretia Seales about the right to die. Legislation to legalise euthanasia in New Zealand was inspired by Seales. Photo / Supplied
New Zealanders will have the final say on two major social issues this year - euthanasia and recreational cannabis use.
The two referendums will take place at the same time as the general election on September 19.
On euthanasia, voters now hold the power. The legislation has already passed and when New Zealanders vote "yes" or "no" it will be binding.
The referendum to legalise personal use of cannabis, on the other hand, is not officially binding. But both the Coalition Government and the opposing National Party have said they will honour what the majority votes for.
Isaac Davison explains what will happen if New Zealanders vote "yes", what the arguments are on both sides, and how you can have your say.
(To read about the cannabis referendum, click here)
It gives New Zealanders the option of legally requesting help to end their lives - either by doing so themselves (euthanasia) or with the help of a doctor (assisted dying).
To be eligible, they have to be 18 years or older, a New Zealand citizen or permanent resident, and suffer from a terminal illness that is likely to end their life within six months.
There are further hurdles for eligibility. They need to be in "an advanced state of irreversible decline in physical capability", experience unbearable suffering "that cannot be relieved in a manner that they consider tolerable", and be competent to make an informed decision about dying.
In response to concerns that the threshold was too broad, the law now explicitly says a person cannot be eligible for euthanasia on the basis of age, mental illness, or disability alone.
Patients will need the approval of two doctors, each with at least five years' experience. One can be their GP and the other must be independent. If either has doubts about their competence, a third opinion must be sought from a psychiatrist.
Unlike other euthanasia regimes overseas, a person does not need sworn witness statements from family members about their competence. There is also no requirement to discuss it with family or friends, though doctors must encourage them to.
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Doctors can opt out of the process, but must advise the patient of their right to contact an official registry to get the name of another doctor who will be willing to discuss it.
If the two doctors give the patient the green light, the person then chooses a time and date to end their life, whether they will do it themselves or assisted, and the method (ingested or injected).
A person cannot write an advance directive that they want an assisted death at a later date.
If at any point a doctor suspects a person is being pressured, they have to stop the process.
The euthanasia regime will include a registry of willing doctors and a review committee which will report back to government and deal with any complaints.
The End of Life Choice Act passed in Parliament by 69 votes to 51 in November. The bill's sponsor, Act Party MP David Seymour, agreed to hold a referendum to secure support from some on-the-fence MPs.
Many of the supporting arguments made for euthanasia and assisted dying are strongly influenced by personal experience, in particular of watching loved ones in distress or severe pain in their last days, weeks or months. There is no political or generational consensus on either side of the debate.
The most common arguments in favour of euthanasia are that people deserve to die with dignity, at a time of their choice, without extreme suffering.
"This right belongs to me and none other," said Wellington lawyer Lecretia Seales, whose death in 2015 inspired the law change.
Seriously ill people say assisted dying could prolong their lives. If they are unable to get access to assisted dying, they will take their own life while they are still physically able to do so. If they have the option of getting help to take their life, they could die in peace later and with family around them.
Supporters say it is possible to have safeguards which prevent vulnerable people being pressured into ending their lives. The threshold for eligibility has already been tightened - it would previously have allowed anybody with a "grievous and irredeemable condition" to qualify for assisted dying.
They reject the "slippery slope" argument - which says making euthanasia legal for a smaller group of people will inevitably expand to a broader group. Supporters of the law change say it can only be expanded by democratic process and any attempt to amend it would have to go back before Parliament - which had already shown it had no appetite for wider eligibility.
Supporters also point to the popular support for euthanasia in New Zealand, with polls indicating a strong majority for legalisation.
Many of the arguments against euthanasia also came from deeply personal experiences, including people with debilitating conditions who had recovered to live a long, fulfilling life.
One of the main concerns raised by opponents was that a law change would make disabled and elderly people more vulnerable. They could be pressured into ending their lives, possibly by family members who were exhausted by looking after them, fed up with the costs of care or medicine, or who wanted their inheritance earlier.
Older or disabled people could feel a "duty to die" because they believed they were a burden on their families.
Anti-euthanasia groups said it was simply not possible to safeguard against abuse or wrongful death. Protections which might seem strong in theory had never been tested by the realities of underfunded health systems or stressed families.
Governments could use assisted dying to save health costs. And euthanasia could worsen existing discrimination against poorer or Maori and Pacific families.
Another common argument was the slippery slope, which is mostly based on the experience in the Netherlands and Belgium, where euthanasia was extended to younger people after initially being limited to adults. Opponents say broader laws may not need Parliamentary approval, and instead could be gained through a court challenge.
There was concern about the absence of a stand-down period between first deciding to get euthanasia and when it can occur. "It would be possible for a person to receive a diagnosis of terminal illness on a Wednesday, gain the necessary approvals under the bill that same day, and be dead before the weekend," said National MP Chris Penk, one of the bill's most vocal opponents.
Some doctors objected to the change, saying it went against their core principle of not doing harm. They were also concerned about how difficult it was to accurately predict when a person might die, and the potential for misdiagnosis.
Some felt that the law change went against the Maori worldview, in which care and respect is shown for elderly and sick people and life and wairua are valued. Religious groups argued that life was sacred and that only God should decide life or death.
New Zealand would become the sixth country in the world to legalise euthanasia or assisted dying. Several states in the United States and Victoria in Australia have also legalised.
New Zealand's legislation is stricter than in the Netherlands and Belgium. The Netherlands allows people as young as 12 to request assisted dying, and it is available to non-terminal patients. Belgium has no age limit for children, but they must have a terminal illness to qualify.
Canada and the state of Victoria have similar regimes to New Zealand, limiting euthanasia to terminal people with six months to live - though Victoria extends that threshold to 12 months if the person has a degenerative neurological condition. Both Canada and Victoria also have stronger safeguards than New Zealand, because they require written confirmation from witnesses that a person is expressing their free will.
Victoria and some US states also have a "cooling off" period, or minimum time between a person deciding to die and when it can occur.
The Ministry of Justice has not done any analysis on how many people might apply for euthanasia if it were legalised. In a comparable jurisdiction, Victoria, demand far exceeded expectations. It was predicted that one person a month would choose to end their life, and since it has been introduced the rate has been closer to two a week.
The euthanasia referendum will be at the same time as the general election, which is on September 19. There will be two voting papers - one for your election vote and one for the referendum.
You will be asked: "Do you support the End of Life Choice Act 2019 coming into force?"
The two options will be:
• 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.
Advance voting begins on September 7, and overseas people can vote from September 2. You need to be enrolled to vote. To be eligible for enrolment, you must be 18 years or older, a New Zealand citizen or permanent resident, and have lived in New Zealand for more than one year continuously at some point.
If a majority of New Zealanders vote "yes" in the referendum, assisted dying would become available in October, 2021.
Richard Simpson died in such distress that his children were not there for his last moments.
Until last year, he was a fit, active, 47-year-old. He loved cycling in the Port Hills in his adopted home of Christchurch. Originally from New South Wales, he had just become a New Zealand citizen last April when he got a shock diagnosis of pancreatic cancer.
He was given a year to live, but the cancer spread quickly to his spine, and his prognosis was cut to a month. In hospice, his last days were agonising.
"He was in pain, he was very distressed and very agitated and kept trying to get up, which he couldn't do," said his wife Amanda. "It wasn't nice to watch. He couldn't speak by then and couldn't say what he needed. But he was in a lot of pain."
Amanda said her late husband was a supporter of assisted dying.
"I know he wanted that option. He may not have used it, but at least it would have been there. He didn't know what the end of his life was going to be. He was scared of that last little phase and what it might bring.
"I would have really liked to have had that option to relieve his suffering. If I was in that position, I would want that as well."
Richard had wanted to spend his last hours in peace with his family. As it was, Amanda could not bear to have their 13 and 15 year-old children in the room for his last three days.
"I don't think until you're in that situation you can really understand what that's like. It's awful to watch someone you love go through that.
"When you are faced with that situation, and you know there is nothing that can be done for you, it is that right and dignity to be able to end your life the way you want and not continue your pain."
As an Anglican priest and disability advocate, Dr John Fox has been at a few deathbeds.
"I know what disabled life and disabled death looks like and the fairly severe sense of vulnerability that one has," he said.
Fox, from Christchurch, will vote against the euthanasia referendum this year, saying it puts disabled people and others at risk.
"The safeguards are inadequate, the principle is unsound. And I think underneath all of this is a frightening fear of what it is to be disabled.
"People say 'I don't want to be wiped, I don't want to drool, to be dependent. To me, that's saying 'I don't want to be you'. I have a huge problem with that."
The 37 year-old has a painful neuromuscular condition called spastic hemiplegia, and believes this would have qualified him for assisted dying under the originally drafted End of Life Choice Act. Eligibility for assisted dying in the legislation has now been narrowed to terminal patients with six months to live.
Fox said no matter how strict the safeguards were, legalising euthanasia meant that there was a fundamental shift to accepting that some lives were "not worth protecting".
If the circumstances were extreme enough, anyone could understand why euthanasia could work in principle, he said.
"But we're not talking about a thought experiment in a philosophy class. What we're talking about is an actual category of people and it will be applied down at Middlemore Hospital in real life, in a place where funding is short, where there are bureaucrats and forms and power dynamics and difficulties."
Even if he were not religious, he would oppose the bill on moral grounds.
"What I would ask people to think about is what disabled life and death is worth. My position is that if you wouldn't do it to a rugby player, if you don't do it to Dan Carter, you shouldn't do it to me."
