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.

Sole Searching

Mike Bodnar pounds the pavements in search of fulfilment

It's blowing a northerly gale and I don't want to go out running in it.

Actually, it could be the most perfect day on earth and I wouldn't want to go running. But the problem is I have signed up for a 10 kilometre 'fun run' (I use the term 'fun' here loosely), and I have just 26 days until the Big Event. I have only myself to blame.

For those stuck in an imperial past, 10 kms is 6.2 miles, so basically just under a quarter of a marathon. Unlike the original Marathon Man, I would therefore never have made it to Athens to deliver the news that the Greeks had trounced the Persians, but then I wouldn't have died as a result either. No news is good news in this case.

So why am I doing this? Let's add some context. This year I turn 70 - hard to believe I know, but there you are. I have a certificate to prove it. It's called a Birth Certificate. And I haven't run for anything other than a train or a bus in about 20 years, so I am not to be seen pounding the pavements or anything like it on a regular basis. Nor am I a gym bunny. My idea of exercise is leaping to conclusions.

But, as with most years, my wife Liz and I are trying to do 'Dry January', where we give up drinking alcohol for the whole month, 1) to allow our livers to recover from the festive season pounding, and 2) to prove to ourselves we can do it - and hopefully feel the better for it. But for me, oh no, that wasn't enough, was it? No, I had to go further. 

I happened to stumble across an item online announcing that this year's Round The Bays Fun Run is to be held on 18th of February, and foolishly I thought, well, why not add a bit of exercise to the non-drinking thing and see what happens? At the worst I won't be able to run that distance, but I do like walking, and walking the 10kms is an option if the running doesn't work out. So I paid the registration fee.

Am I mad or what? (Hold off answering please until you've read a bit more)

No, not entirely loopy. I ran a couple of half-marathons back in the 1980s and did so in quite reasonable times. In those days I would run for enjoyment (I know, right?), and I did actually sometimes reach that 'zone' that runners talk about, where you achieve a certain physical and mental satisfaction - if not a kick - simply from running a decent distance. It's a buzz, a fix.

1987 half-marathon, that's me in the middle, post-run

But as I said earlier, running for a bus is about all I've done in recent years, although I am at least blessed with legs, hips and knees that still work okay, and walking, even long distances, isn't a problem.

One doesn't, however, at the age of 69 just slip on some running shoes and head out the door for a five kilometre jog; that would be foolish and possibly even dangerous. No, one is supposed to build up both distance and stamina over time, and so there are schedules available online showing how far to run each day (or even if to run - there are rest days), and how to increase your distance gradually over time. Which is what I've been doing.

It's been going okay, but I have to be honest, I really don't want to do it. Yesterday for example was my weekly 'rest day', i.e. no running at all. Lovely. It was also 29 degrees Celsius (84 F) so I  shouldn't have been running in heat like that anyway. Instead I lay on the sun lounger and drank zero-alcohol beer.

Today though I'm supposed to be out for another training run, and I just don't want to go. It's very windy, and that seems like a good excuse. The Clash is singing in my head right now: Should I stay or should I go? Followed by the lines: If you run it is a slog... So stay at home and write a blog. Which is exactly what I'm doing.

It's a delaying tactic. I'm good at those. I should write a self-help book on delaying tactics, and maybe I will. One day. Maybe.

But I will run today. I know I will, because in the past three weeks I've gone from not being able to jog even a kilometre, to now running 4.42 kms non-stop. Plus I've lost around 3 kgs (6.6 lbs) in weight, although given that I'm not drinking alcohol it's likely to be a combination of that plus the exercise that's doing it. I needed to lose weight anyway as I was developing what's known as a roof over the tool shed.

It's helped that at weekends my son comes running with me and is gracious enough to shuffle along at my pace rather than his more lengthy lope. I suspect he also knows how to make sure he stays in my will. It's good to have a running buddy though and I look forward to our runs together. But because he works Monday to Friday I find myself having to train alone during the weekdays, which makes it harder. As does Wellington's wind today. Oh the reasons not to go running are mounting up!

The training advice online says that if you are in pain from running then you should stop, particularly at my age. I do actually have a bit of a twinge behind my knees, another excuse to stay home, but if I'm honest it's not really bad, and I know that when I start running I won't notice it.

And then there's the people, the crowds. I had planned to run today along the waterfront, and now it's lunchtime which means there'll be lots of people promenading, getting in the way, blocking my path. Yes, I should just stay home. There's always tomorrow, or the next day. Maybe I'll just do some sit-ups and push-ups, a few stretching exercises. The deck is sheltered and the sun lounger is calling to me. There's a cold 0% alcohol beer in the fridge.

Oh sod it. I'm going for a run. See you later.

The Book of the Year! Success for Unity!

 Actually, my apologies, I think I’ve transposed the headline; maybe it should be The Year of the Book, since 2023 was when I completed and published my first spy novel, Unity. Thank you, thanks. Wonderful. No really, there’s no need. Oh all right, keep going… (takes a bow, accepts flowers)

Was Unity a success? Well, that's a good question, but it might not be the best way to ask it. I’m reminded of when Bilbo wishes the wizard Gandalf good morning: Gandalf looked at him from under long bushy eyebrows that stuck out further than the brim of his shady hat. “What do you mean?” he said. “Do you wish me a good morning, or mean that it is a good morning whether I want it or not; or that you feel good this morning; or that it is a morning to be good on?”

I’m no wizard (and some might argue no author), but whether my novel has been a success depends on the perspective. So, at the top level we could perhaps argue that for a novel to be successful it must have become a best-seller, perhaps with the film rights bought by a production company. Unity has sold fewer than 150 copies in a year (pass me the tissues…) and nobody has beaten a path to my door for the rights to it, so in that respect it has been a miserable failure.

Another benchmark would be that an established publisher picked it up and is now promoting it to booksellers and libraries throughout the land, with a generous advance to me to write a sequel. The publisher has organized a number of launches and signings, and I am in demand by all the literary supplements for interviews and profile pieces. Spoiler alert: I don’t have a publisher. I self-published, so no speaking tour or interviews, and no profile pieces. And I can’t afford any paid promotion. Success? Nope.

It’s about here that Gandalf, his bushy eyebrows arching together, would ask: “Or do you mean it’s successful because those who’ve read it have enjoyed it?” Okay, now we’re getting somewhere. By all accounts – and I mean verifiable feedback: reviews and ratings on both Amazon and Goodreads, along with direct emails and feedback to me personally – Unity has been successful. Those who’ve read it have enjoyed it (or for some reason been too scared to tell me they haven’t).

Ah yes, you ask, but are we talking hundreds of reviews and ratings? Because that would be a measure of success surely. Er, no. At time of writing there are 14 ratings and ten reviews on Amazon (but averaging 4.8 out of 5), and nine ratings with five reviews on Goodreads (all five stars). In terms of the quality of feedback then, yes Unity is a successful novel. In respect of the quantity? No, still struggling.

But what about peer endorsements? Established novelists usually have another famous author endorsing their books on the front cover, which gives confidence to the potential reader. If Ian Rankin says of Mick Herron’s Spook Street that it’s “A terrific spy novel” (which he does) then for Ian Rankin fans that’s all they need to check out Herron’s works. Did Unity receive any famous endorsements?

Well, actually, yes. Veteran actor Derren Nesbitt (Where Eagles Dare, The Prisoner, Special Branch, etc.) liked it and said I was “a very fine writer.” (Some may know that Unity has a tie-in to the enigmatic ’60s British TV series The Prisoner and Nesbitt was one of the guest stars). And David Pinner, author of Ritual on which the cult film The Wicker Man is based, calls Unity “a fine thriller.”

Successful endorsements? Yes and no. If Unity was widely available in bookshops and people saw those endorsements on the cover they might well be encouraged to purchase. But it’s not. So, lovely though the endorsements are, it’s like shouting them into the darkness and not even hearing an echo. But I’ve got them, so at least that’s something.

But about now Gandalf would be going, “Hrumph,” and snapping the reins to get his horse and cart moving along with some haste.

Am I despondent? Do I feel writing Unity was all a waste of time? Am I giving up writing altogether? You’d be entitled to ask given that so few copies have sold and considering all the energy I put into it. But for those of you with a bad case of schadenfreude, bad luck; no I’m not giving up, and here’s why…

I learned a lot about writing when I authored Unity. I unashamedly mimicked some of my favourite authors, emulating their writing styles and being inspired by their use of language. Not for a moment is this plagiarism; I am talking about being inspired by other authors, not pinching story lines, paragraphs or whole pages from them. I believe the quality of my writing improved as a result. That’s a success, and I enjoyed writing the book. Yay, high-fives all round.

When the book was in its final draft form I managed to cobble together a ‘focus group’ of 12 pre-readers who agreed to read it and provide me feedback, both in terms of the story and the grammar, spelling etc. As a result, I was able to tweak the narrative appropriately before release and fix most of the errors; any remaining are entirely my fault. How is that a success? Well, I didn’t have to pay for an editor (which I couldn’t afford anyway) and it helped confirm for me that the story was actually okay; independent readers told me so.

And finally, I successfully self-published Unity using Amazon KDP – Kindle Direct Publishing – a platform for authors to get their works published and available globally at virtually no cost. I designed and created my own cover, uploaded and formatted the manuscript, and proofed everything before hitting the “Publish” button. Hey presto, the book was born.

There are no vast stocks of Unity sitting in a warehouse somewhere, costing me storage fees; Amazon KDP makes the eBook version available for instant download, while the paperback and hardback versions are available on a print-on-demand basis, something that still gobsmacks me to this day. I recently ordered ten copies and they arrived within seven days. I don’t know how they do it.

I know of authors who can’t negotiate the mechanics of publishing with KDP and who pay “experts” a lot of money to do it for them. In that respect, I regard having done it by myself an achievement.

But beyond all of that, I wrote a spy novel. It might not win the Booker, it might not be a best-seller, and it might not even be in the shops. The thing is: I did it.

Success.

(Find out more about Unity: Peace for All, Freedom for None at www.unitystory.com)