Dying Words - A Personal Account of New Zealand's 'Assisted Dying' Legislation

 By Mike Bodnar

Paul Weaver

In November 2021, New Zealand enacted legislation allowing assisted dying as an option for the terminally ill. This followed a referendum a couple of years previously, in which 65% of those who took part favoured the introduction of the option.

New Zealand isn't the first country to have such legislation - Canada, the Netherlands, Germany, Belgium, some US states, Australia, France and Japan all offer it, usually for people diagnosed as terminally ill or who are in a state of unbearable suffering. In Switzerland, assisted dying is available to anyone who wants it regardless of their state of health, as long as it's not 'for selfish reasons.' 

But New Zealand's End of Life Choice Act is tightly controlled, and has a strict set of criteria that must be satisfied before a person can qualify for the procedure. Paul Weaver, who lived near Wellington, New Zealand's capital, was one of those who qualified.

Paul had suffered from emphysema for seven years, and his prognosis was not good. But then a pair of lungs became available through a donor, and in June 2022 he underwent a double lung transplant operation. It was successful, at least initially. Eighty percent of lung transplant recipients survive to the one-year mark, while 60% reach the five-year mark, so Paul was told by medical professionals that this could only ever be viewed as a life-extending procedure rather than a life-saving one. Unfortunately it did not extend his life by very long.

Surgeons at work (stock image)

After less than a year the medication he had to take to battle his body's rejection of the new lungs compromised his health, and slowly but surely the new lungs began to fail. He knew it was a terminal situation. He knew also that he didn't want his last days to be a trial, not just for himself but for his family and friends. Paul had watched his wife Bernadette die in an undignified way from a cancer in 2012.

'Her exit was pretty unattractive,' he recalled. 'Her particular combination of things meant she wasn't getting enough oxygen to her brain, that caused her body to fit for quite some period, and so you had the family, and myself, and my daughter who was only 15 at the time, watching her mum fit her way to dying, and while the medical folk were apparently giving her drugs to help her, that's not the way it seemed from where we were.'

And so Paul, at 61 years of age, knowing he had less than six months to live, investigated assisted dying. He found he ticked all the boxes, which state that a person needs to: 

• be 18 years or over;
• be a New Zealand citizen or permanent resident;
• have an illness that’s likely to end their life within six months;
• be in an advanced state of irreversible decline in physical health;
• have unbearable suffering that can’t be relieved in a way the patient finds tolerable;
• be able to make an informed decision about assisted dying.

So the End of Life Choice Act is not an option for you if you're living in another country and reading this - you can't just hop on a plane and come to New Zealand on a one-way ticket with a plan to end your life. Possibly Switzerland would be an option, but it requires some careful research first. 

Dignitas Clinic in Switzerland (stock image)

For example, earlier this year a British woman chose to go to Switzerland to end her life. Her plans were discovered by a PhD student who was doing research in this area and who not only made contact with the woman but gained her approval to accompany her on her journey to the clinic in Switzerland. 

On returning to England the student was arrested by police, because she had allegedly 'assisted' the woman to carry out her own death. Assisted dying in the UK is illegal, and is viewed either as murder or manslaughter. So, if you're considering assisted dying as an option you need to fully investigate its status in your own country first, along with, as required, the regulations of any country you might be planning to travel to for the procedure.

But back to New Zealand. One of the key aspects of assisted dying in Aotearoa is that medical professionals cannot recommend it to a patient, even if the patient is terminally ill and suffering. The onus is on the patient to ask about assisted dying. Once that's done, a GP or other medical professional can discuss the option in detail.

General practitioners are not, however, bound to provide assisted dying advice or to carry out the procedure; they are allowed to stand down if they do not personally agree with assisted dying or are uncomfortable with it, but if asked about it they must pass their patient on to another medical professional who will discuss it.

GPs cannot bring up the subject
of assisted dying (stock image)

Paul Weaver knew this, but found that he was easily able to discuss the option with his own doctor. In fact, he said he could see the relief on his doctor's face when he, Paul, brought up the subject of assisted dying.

Before a patient can take up the assisted dying option though, a second doctor must examine them and concur that they fully qualify - and especially that they are in a sound mental state to make the decision.

Critics of the New Zealand legislation say it is too restrictive - that it doesn't apply to people who are severely disabled for example, and others whose quality of life might be extremely hard. It doesn't apply, for example, to those suffering from advanced dementia. ACT party leader David Seymour says that the six month terminally-ill timeframe should be scrapped. 'It's a shame that some of the people who suffer the worst are still unable to access the law.'

In support of relaxing the criteria, the chief executive of Totara Hospice, Tina McCafferty, told media she would '...at best like to see that timeframe removed, or extended to twelve months.' 

At the other end of the scale, there are many who believe the End of Life Choice Act is just wrong, and has no place in a society where palliative and end-of-life care is of a relatively high standard. In the lead-up to the second reading of the Act in 2019, a coalition of 1000 doctors presented a petition against the introduction of assisted dying legislation, telling media that it believed, 'physician-assisted suicide and euthanasia are unethical, even if they were made legal.'

Anti-abortion movement Right to Life also took up the call against the legislation, with secretary Ken Orr arguing that voluntary euthanasia is both suicide and murder, while Hospice New Zealand declared that they would provide care up to the point of end of life, but would not accommodate the procedure within hospices. CEO Wayne Naylor said, 'The actual act [assisted dying] itself is not a thing that hospices do as it is not part of hospice care.'

However, the End of Life Choice Act was passed and became law on 7 November 2021.

The legislation is up for review soon (late 2024), although this will still only result in recommendations rather than any guaranteed changes, so any law amendments will probably rely on the tabling of a private member's bill. It could be two or three years before any changes, if any, are effected. 

But for Paul Weaver the legislation as it stands did work. His primary aim in choosing it, as mentioned, was that his family and friends did not have to go through the anguish and pain of watching him die over a protracted period as his lungs deteriorated. He succeeded in that. In a final email to me just days before the procedure he said, 'my body is broken and other exits could get pretty ugly.'

Paul Weaver left us voluntarily on 1 September 2024.

POSTSCRIPT

In July this year, after having qualified for assisted dying, Paul agreed to be interviewed about his decision for my Access Radio programme 'Mike On...' and in that half-hour chat he clearly sets out the background for choosing to use the option of assisted dying and the implications of it. It's a poignant and reflective story, and it underlines one of the key motivations behind the legislation: that a person can bypass unbearable suffering at the end of their life, and save their nearest and dearest from the pain and anguish of watching them in their final decline. I believe it's worth a listen.

The programme aired on Wellington Access Radio on Thursday 12 September. Anyone can still listen to it via the station's website, on the 'Mike On...' podcast page. It is also be available on Spotify Podcasts, Apple Podcasts and iHeartRadio. 

The programme was broadcast in memory of, and is dedicated to, Paul Weaver.

If you want to know more about assisted dying in New Zealand, or would like to speak to a counsellor, here are some options:

Some organisations and departments associated with assisted dying:

NZ Ministry of Health 

Te Whatu Ora

Voluntary Euthanasia Society New Zealand

End-of-Life Choice Society NZ

For counselling in New Zealand:

Lifeline NZ, phone 0800 543 354 or text 4357

To speak or text to a counsellor dial 1737

This page was updated on 9 September to correct a date error.