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Explainer: End of life choice referendum

31 Aug 2020 9:40 AM | Philip Patston (Administrator)

Source: Newsroom

As well as picking a preferred party and candidate, voters will have their say on euthanasia and the Cannabis Legalisation and Control Bill. Here's what you need to know about the End of Life Choice Act.

In 2016, Sir Geoffrey Palmer delivered the first Lecretia Seales memorial lecture. The topic was law and life.

Palmer, a former prime minister, knew Seales well, having worked with her at the firm Chen, Palmer and Partners, and again when he was president of the Law Commission.

Seales was first diagnosed with brain cancer in 2011. (Opponents of “assisted suicide” point out she was initially “given only weeks to live”.)

She lived as full a life as she could, travelling to Buenos Aires to dance the tango, and tripping to San Francisco, Bermuda and Morocco.

But the symptoms soon set in. She needed a walking stick, couldn’t drive, and needed help to dress. “She became seriously impaired,” Palmer said in his lecture. “She experienced increased pain.”

The prospect of a slow, unpleasant, painful and undignified death weighed heavily on her mind, Palmer said. She felt deprived of options. (Seales’ mum Shirley told Newshub she thinks her daughter might not have chosen to end her life.)

After researching a ground-breaking Supreme Court decision in Canada, Seales took a case for assisted dying to the High Court in Wellington. It became known as Lecretia’s Choice. She told the court: “If my death is manageable I should be the one to manage it.”

Justice David Collins’ decision was read to Seales before she died on June 5, 2015. The case failed.

“But the case and the evidence contributed powerfully to ensuring that the adequacy of New Zealand law on this subject would be examined,” Palmer said a year later.

That examination has now passed through Parliament and its fate will be decided by voters, in the end of life choice referendum.

Controversy and divisions

The End of Life Choice Bill’s passage was controversial and difficult.

The justice select committee, which considered it, couldn’t agree the bill be passed. (It did pass, in a conscience vote, 69 votes to 51, in November last year, with the caveat the issue would go before voters in this year’s election.) Some committee members insisted that assisted dying be described as “suicide and euthanasia”.

There were 39,159 submissions. Of the 36,700 written submissions, about 90 percent opposed it. (However, a 2018 Newshub poll, and many others, have suggested most Kiwis supported euthanasia.) Hearings for the 1350 oral submitters were held from Whangarei to Invercargill.

Opposition came from many quarters.

The Medical Association, the country’s largest medical organisation, with more than 5000 members, was against “euthanasia and doctor-assisted suicide”.

Beyond what it believed was serious shortcomings and technical flaws in the bill, it said the practices were “unethical and harmful to individuals, especially vulnerable people, and society”.

“Euthanasia in any form conflicts with the ethical principles of medical practice and would change the fundamental role of the doctor and the doctor-patient relationship.”

Some doctors, however, supported the bill on compassionate grounds, having seen patients in terrible pain and knowing nothing more can be done for those patients.

(A 2018 survey conducted for New Zealand Doctor magazine found 52 percent of doctors opposed assisted dying if death was imminent, while 32 percent supported it.)

ACT leader David Seymour introduced the End of Life Choice Bill. Photo: Lynn Grieveson

Some palliative care professionals believe assisted dying conflicts with the basic principle of their practice – to “neither hasten nor postpone” death.

Concern about family members manipulating and coercing elderly people were raised by aged care workers. Elderly and sick people can often feel they’re a “burden” to their family, and could feel pressured, the select committee was told. Some aged care professionals didn’t want assisted dying to take place at their workplace.

Meanwhile, some seriously ill people said legal assisted dying would mean they could die more peacefully, with family around. Others suggested suffering is an important part of the human experience, which would be compromised. Modern medicine already provides adequate pain relief, some submitters said, and is improving every day.

Faith-based groups referred to the sanctity of life. Only God should decide the timing of life and death, they said. Euthanasia and suicide are morally wrong, and contradict religious teachings.

Some worry that Māori and Pasifika people already have high suicide rates and this law change would make it worse.

On Lecretia’s Choice, Justice David Collins wrote in his 2015 High Court judgment: “I fully acknowledge that the consequences of the law against assisted suicide as it currently stands are extremely distressing for Ms Seales and that she is suffering because that law does not accommodate her right to dignity and personal autonomy.”

Whether New Zealand allows a law change enabling euthanasia – a Greek term meaning “good death” – is in the hands of voters.

What is the question?

The referendum asks: “Do you support the End of Life Choice Act 2019 coming into force?” Your options are yes or no.

But didn’t the Act pass already?

It did, but it’ll only come into force if more than 50 percent of voters tick ‘yes’.

What does the Act do?

It gives people with a terminal illness, who meet certain criteria, the option of legally ending their lives with medical assistance. It also sets out the process by which that can happen.

Has this been before Parliament before?

Yes, assisted dying bills were debated in 1995 and 2003 – in both instances, they were defeated at the first reading. A 2012 bill was withdrawn before the following year’s election.

Would New Zealand’s Act lead to euthanasia tourism?

No. To be eligible you’ve got to be a New Zealand citizen or resident, and aged over 18. You must have been diagnosed with a terminal illness that is likely to end your life within six months and be competent to make an informed decision. The other criteria are you’re at an advanced state of irreversible decline in physical capability and experiencing unbearable suffering.

What would it mean for life insurance?

People eligible for this process are suffering from a terminal illness, and, for the purposes of life insurance, that’s what they would have died from.

Who would not be eligible for assisted dying?

Those who, as their only reason for asking for an assisted death, say they’re disabled, of “advanced age”, or suffering from a mental disorder or mental illness.

How would the conversation go?

A person with a terminal illness tells the “attending medical practitioner” – their doctor – of their wish to legally end their life. That doctor must then provide the prognosis for the person’s terminal illness and have a serious talk about the consequences – or, as the Act puts it, the “irreversible nature” and “anticipated impacts” of assisted dying.

How could a doctor be sure the decision was that person’s own free will?

There’s a checklist. The doctor must talk to their patient regularly – the Act says “at intervals determined by progress of their terminal illness” – and be sure they understand other options for “end-of-life care”. They’re to be told they can change their mind at any time, right up to when the “medication” (some would prefer the term “lethal drug”) is administered. The doctor must encourage, but not force, the person to discuss their wishes with family, friends and counsellors, and be sure they’ve had the opportunity to do so. If permission is granted, the doctor must also talk to the person’s family members. Another check is the doctor must confer with other health practitioners in regular contact with the patient.

What if there was a suspicion they were being pressured?

The process stops.

And if the checklist was completed without incident?

The doctor records everything they’ve done to comply with the checks. Then the person – or, if they’re unable to write, their proxy – must sign and date the form, in front of the doctor. The proxy must be over 18, mentally capable, must not know they could benefit from the person’s death, and can’t be their doctor. The signed form is sent to a registrar.

The registrar?

They are a Ministry of Health official, one of three new roles created under the Act, should it come into force. The others are the Support and Consultation for End of Life in New Zealand group, or SCENZ, and the End of Life Review Committee. They have various responsibilities, including maintaining a list of doctors who are willing to act as replacements for conscientious objectors or independent doctors.

Doctors could object?

Yes. They can refuse to take part in the process, and can’t be penalised for that refusal. Once they’ve declared their objection, they tell their patient they have the right to ask for a replacement doctor. Doctors who take part in the process, and follow the rules, are immune from prosecution.

After the form was sent to the registrar, what would happen?

If the person’s deemed eligible for assisted dying by the doctor, a second opinion must be sought from an independent doctor. They read the medical files and examine the person. If they reach the same opinion, a form is completed and sent to the registrar and initial doctor. If either doctor is unsure about the competence of the person to make an informed decision, a third opinion is sought from a psychiatrist.

What if a person is deemed ineligible?

They can’t get assisted dying. Doctors, and a psychiatrist, if consulted, have to explain their reasons to the person.

And if they are eligible?

The doctor has another list of tasks to complete, after which another form is filled in and sent to the registrar. The person must be told they are eligible for assisted dying, and a discussion had about the progress of their terminal illness. They must be advised they can change their mind at any time, or defer when to receive the medication by up to six months. A date and method for assisted dying is chosen.

What are the proposed methods?

There are four: ingestion, triggered by the person; intravenous, triggered by the person; ingestion through a tube, triggered by the doctor or nurse practitioner; injection administered by doctor or nurse practitioner. (While all are covered by the term “assisted dying”, if the final act is done by a medical professional it’s deemed “euthanasia”, while self-administration is known as “assisted suicide”. In some countries “palliative sedation” is offered to the terminally ill, which means they stay in deep sedation until they die.) The prescription for the lethal medication must be written at least two days before the chosen date. The registrar notifies the doctor if they are satisfied the process has been complied with.

What would happen on the day?

The person must be asked if they choose to receive the medication at that time. If not, they can nominate another date, within six months, or stop the request altogether. The registrar is advised of any change of plan.

And if they agreed to receive the medication?

The doctor or nurse practitioner gives it to them, and must remain nearby until they die. A report is made to the registrar, including information about the person and the medical staff attending.

Would the process be public?

No, it’s confidential.

When would the Act be reviewed?

After three years, with further reviews every five years after that.

Where in the world does assisted dying happen?

Switzerland, the Netherlands, Belgium, Luxembourg and Colombia allow it, under certain criteria, as do many states in the United States. Most recently, assisted dying laws have been passed in Canada and the Australian state of Victoria.

What is their experience?

Numbers of assisted suicides and euthanasia are increasing. In Switzerland, for example, cases of legal assisted dying have increased from 187 people in 2003 to 928 in 2016. In Oregon, terminally ill people who ended their lives through “voluntary self-administration of a lethal dose of medications” under its Death With Dignity Act have risen from 59 people in 2009 to 188 people last year.

Has it been ‘successful’?

It depends on who you talk to. Supporters will say increased use of assisted dying is a sign of safe and effective laws, with appropriate safeguards. Interestingly, in Oregon, the use of palliative care has increased alongside the increase in assisted dying. However, opponents raise concerns of a “slippery slope” – that the law has gone beyond the terminally ill to people with disabilities or mental illness. There are such concerns in the Netherlands, but it’s not evident elsewhere, like Oregon. Doctors involved in assisted dying in the Netherlands, Belgium and Oregon have been investigated for malpractice.

What’s happening across the ditch?

Victoria’s Voluntary Assisted Dying Act came into effect in June last year. In the first six months, 52 people in Victoria chose to end their lives under the Act’s process.

Click here for Newsroom’s full euthanasia section.

The Referendums website has a summary of the End of Life Choice Act and frequently asked questions section.


© End-Of-Life Choice • PO Box 321, Gisborne 4040 • Email: office@eolc.org.nz




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