by Matt Vickers
Research by Horizon Research on New Zealanders’ views on end-of-life choices conducted in July 2012 showed that 62.9 per cent of adult New Zealanders support entitling all mentally competent adults to receive medical assistance in ending their life if they are suffering from a terminal illness or an irreversible physical or mental condition that in their view renders their life unbearable. I would hazard a guess that that figure would now be higher, following the film segment made and distributed via social media by brain cancer patient Brittany Maynard.
Being in pain and unable to move is a misery, not a life. As my aunt, who is a nurse, has said to me, ‘lingering is not living’.
When a person is terminally ill, there may only be a brief period when that person is able to make rational and sensible decisions and is physically able to sign a form or self-administer a lethal drug. That is where assisted dying in accordance with previously recorded wishes should be possible. The bill provides for this too by establishing a regime for the registration and implementation of an end-of-life directive made by a person who is terminally ill while that person is mentally competent, but to be actioned after the person becomes mentally incompetent or other specified circumstances exist. Without such a regime, a person who is terminally ill has only the option of committing suicide while they are physically able to, which may be long before an end-of-life directive would have come into effect. Suicide is a lonely and often violent death. It would be far more humane to enable a peaceful process for dying surrounded by loved ones.
Although I am not suggesting for one moment that the most appropriate lens for examining this type of situation is an economic one, an economic analysis supports the humanist view. From an economic perspective, it would be madness to pay to keep someone alive and in care when the person does not even want this. It would be far better to allocate that funding to another part of our overstretched health care system.
Several other countries allow mentally competent, terminally ill residents to voluntarily request and receive aid to hasten their death. It is time for New Zealand to catch up and recognise the right to have an end-of-life choice.
Lecretia sent the article to her friend Cate Brett, asking her whether she thought a newspaper might be willing to publish it. Cate suggested sharing it with her friend, the renowned journalist Rebecca Macfie. Rebecca called Lecretia and asked if she could write a story about her for the Listener. Lecretia agreed.
I advised Lecretia against doing the piece. I couldn’t understand why she wanted to give up her privacy, and I was rather selfishly worried for myself. My career was beginning to take off at Xero, and I was concerned about what it might mean for me if I was pulled into the story. I was also worried about how I might be perceived—that if my voice were too strongly supportive, people might wonder whether I was pushing Lecretia towards this point of view, or worse, coercing her into seeking assisted death. But I began to see that Lecretia’s inner strength and discipline—previously focused on maintaining privacy, dignity and strength in the face of pain and diminishment—were now being devoted to injustice. She wanted to galvanise law reform.
The story, ‘Dying Wishes’, was published in January 2015, just a few weeks after Iain Lees-Galloway was instructed by his party leader, Andrew Little, to withdraw his private member’s bill from consideration. The End of Life Choice bill was history, but Lecretia’s quest to change the law had begun.
Chapter 15
AS LECRETIA AND I faced her illness, and the prospect that her treatment options were running out, I found that I began throwing myself into work. I leaned more heavily on Lecretia’s friends and family to support her at home. This was partially because work had become much more demanding, involving more international travel, but at the same time I was certain Lecretia wouldn’t be able to work much longer and that our income would be pulled back. I didn’t know what costs were likely to arise in having to care for her. I felt like I had to do whatever it took to keep my role at Xero. The common wisdom is that health problems put work into perspective and make it less important, but that’s not true: in the absence of complete financial freedom, something most young people will never have, they increase your reliance on work to ensure your continued comfort. I wanted to make sure Lecretia had everything she needed, and that was only going to be possible with a good income. Of course I wanted to stay home with her, but we lived in the real world.
When an opportunity came up to go to Vancouver in Canada in early 2015 for a leadership training program, I asked Lecretia what she thought.
‘You should do it,’ she said.
She didn’t want me to go, but we always shared a basic principle in our marriage: never hold the other back. Nonetheless, I felt guilt. But my view was that Lecretia was going to live for another eighteen months at least, perhaps longer, and that if she got really ill, I might not get this opportunity again. We might both be off work for years as I cared for her at home. We couldn’t predict the future. So we agreed I would go to Vancouver.
The day Lecretia’s story was published in the Listener, I was heading to Auckland to connect to a flight to San Francisco. I picked up five copies of the magazine at the airport. I remember the strange sensation of seeing Lecretia’s face staring out from the magazine rack, the first flicker of her fame. She looked beautiful. The only hint of her illness was a slight weakness in one side of her smile.
Lecretia’s central argument at that time was that the Law Commission, her employer, was the best forum in which to explore the issue of assisted dying. Under Sir Geoffrey Palmer’s leadership it had taken on more social issues—like a review of the legislation regulating the sale and supply of liquor—and had proven itself adept at handling such things. Lecretia’s view was that the Law Commission could evaluate the evidence dispassionately and make sound recommendations on how the law might be amended to achieve desirable social outcomes, which would form the basis of an informed parliamentary debate.
At that point, Cate Brett offered to handle media for Lecretia, fielding requests for interviews, comments and statements. We trusted her completely. After the article’s publication, there were inquiries from most of New Zealand’s major news sources, and many letters from New Zealanders in support of Lecretia’s stand.
Lecretia’s first course of action was to write to the minister of justice, Amy Adams, requesting that the government refer the issue to the Law Commission for investigation. The minister’s office didn’t reply to Lecretia directly, to my knowledge, but called the chief commissioner, Sir Grant Hammond, to ask what this was all about. It became pretty clear that the Ministry of Justice was not going to request an inquiry, and that the Law Commission was not going to upset the government of the day by initiating its own inquiry into such a fraught area.
Meanwhile, I began my leadership course in Vancouver, in the heart of the Canadian winter. It had brought together twenty-four people, mostly from the US and Canada, from various disciplines. The course took a holistic approach that encompassed meditation, diet and soul-searching as well as practical exercises in creative direction and leadership.
On the first day, after taking a long walk along the beach, we came upon a Fibonacci spiral of small disks, laid out in the sand. One by one, we were told to walk the spiral outwards, as slow as we liked. Each stepping stone represented a year of our lives, and we were to reflect on the person we were at each step, and to stop on the year we were currently in.
When it was my turn, I remembered the cheeky, big-eared kid I was, my years in primary school, my awkward teenage years of bad poetry and desperately wanting to escape being a misfit. The pain of my parents’ divorce, my bacchanalian university years in Auckland, moving to Wellington and starting to come right. I remembered my feeling of not completely being in sync with the world until Lecretia appeared when I was twenty-six. I was imagining walking with her, recalling the experience of falling in love with her, of marrying her. I smiled with every step. And then remembering those three years of struggl
ing with fertility, and Lecretia’s longing to conceive. Her illness, and the memory of sharing our lives as it took hold of her; the years of radiotherapy and chemotherapy and doctors’ visits and letters to overseas clinics and late night conversations about the future.
When my feet came to rest on the thirty-eighth stone, I stopped. In walking the spiral I’d had a sense of being on a trajectory, and Lecretia being on that trajectory with me—but somewhere beyond the stone I was on, I would probably be walking alone again. And it scared me.
I was told to walk back to the point where my life had most significantly changed. I walked back four years, to where Lecretia had gotten ill. I briefly considered walking back to when I had met her, or when we married. But those things hadn’t changed me. When she met me, and when she married me, Lecretia accepted me for who I was, although she did make me want to be a better person. When she got ill, however, the trajectory of my life was inexorably disrupted. My own view of myself changed from partner to provider, from lover to carer. I took my job more seriously. I became more ambitious—not to secure my own success, but to ensure I would be able to provide for her. It was at that point that the future had suddenly became chaotic: images of kids and white picket fences and retirement and growing old together were broken into fragments shored against the ruins of our future, which was a wasteland.
And then I walked out to where I thought my life would end. I walked out along the spiral arm to eighty-three, and looked back to where thirty-eight was, and wondered how many more steps from there I would have Lecretia with me. I hoped for decades.
At around this time a hearing was drawing to an end in the Supreme Court of Canada. In 2012, in a landmark ruling in the Supreme Court of British Columbia, Justice Lynn Smith had declared that the prohibition on assisted dying was unconstitutional, and that the government was obliged to amend the law to allow it. After the most exhaustive review of the evidence ever conducted, examining what had happened in Oregon, Washington, Vermont and Montana, along with the Netherlands and Belgium, Justice Smith decided that there was nothing to suggest that the various nightmare scenarios presented by anti-assisted-dying advocates had come to pass. On the contrary, she found that most objections were really only arguments for stronger safeguards. She declared the criminal provisions that prevented assisted dying in Canada were unconstitutional, finding them an infringement of every Canadian’s right to life, liberty and security of the person.
In 2014, the case went to the Supreme Court of Canada, the highest court in the land, and in February 2015 its nine judges unanimously upheld the judgment of Justice Lynn Smith. The Canadian government was then forced to implement assisted-dying laws in accordance with Justice Smith’s original ruling, which would take effect in June 2016.
When I returned home it was a happy reunion, but I noted the difference in Lecretia’s condition. She was a little unsteadier now, and had taken to using her walking stick more and more. She was still as determined as ever, though, and the case in Canada had caught her interest.
In New Zealand, identifying an infringement of rights was not enough to change the law like it could in Canada, but what a court case could achieve is something called a declaration of inconsistency. If a judge ruled that the bill of rights and a particular law were not consistent, there would be impetus for parliament to clarify the laws to deal with it. Lecretia mused that a declaration here might lead to a debate in the house and a select committee review, meaning that the public could finally have their say. If a declaration of inconsistency could be achieved in the courts, parliament would almost certainly be spurred into some sort of action. The only problem was that since the enactment of the Bill of Rights Act in 1990, no New Zealand court had ever made a declaration of inconsistency.
Lecretia’s interest in the New Zealand bill of rights was longstanding. In 2006, she co-wrote an article for NZ Lawyer magazine: ‘An Underutilised Public Law Tool? The First 15 Years of the New Zealand Bill of Rights Act 1990’. In it she drew attention to the fact that the use of the bill of rights in the civil arena had so far been limited.
Lecretia contacted Andrew Butler, a lawyer specialising in public and constitutional law who practised at Russell McVeagh and was a leading expert on New Zealand’s bill of rights, to sound him out about what had happened in Canada:
Hi Andrew,
You are probably too busy to entertain this but I thought I would sow the seed anyway. You may be aware that the Canadian Supreme Court has very recently held by a unanimous 9:0 decision that laws banning assisted dying in that country are unconstitutional. It would be interesting to see what our own courts might have to say on the matter.
If anyone was interested in taking a potentially groundbreaking case on, I would be an ideal plaintiff because the issue is of direct relevance to me. I don’t have deep pockets however!
Andrew replied to Lecretia, and they had a long discussion about it, but made no firm commitments. She emailed him again:
Thanks for talking to me today. I’ve spoken to my GP, who would be willing to assist me if granted immunity from prosecution for aiding suicide.
I should say that I am nowhere near the point where I would want assistance to die, but it would be a comfort to know it was available should things become too awful.
Lecretia was interviewed in early March on Radio New Zealand. I helped her dress and took her to the studio. Once she was collected at reception, I went out to the car to find a better park. It took me fifteen minutes to find one, and I remember listening to the radio as I did so, and hearing my wife’s voice as she began talking about her beliefs and why she was campaigning for change. Her conviction and her self-belief were unmistakable. What she was saying was coming straight from the heart. She really wanted to have the choice to be assisted to die, and she sensed a great injustice.
Lecretia was asked about the Canadian court decision, which had happened less than a month ago, and whether a similar decision could be reached in New Zealand. Lecretia replied that one could.
She still wasn’t sure about taking the case, as her health was continuing to get worse. After three rounds of chemotherapy, with no beneficial effects, the oncologist could offer no further treatment. Though Lecretia seemed willing to accept this, her mother and I pleaded with the oncologist for other options, but after treatment Lecretia’s white blood cell count was dangerously low, and it had to recover before we could look at anything else. For the time being, all treatment, except for anti-seizure medication and steroids for swelling, had ceased.
Later in March, we headed south to Christchurch to catch up with Cate for an evening. The next day we drove to Kaikoura, on the east coast of the South Island, to go whale-watching. We stayed in a lodge just north of the town, and had a beautiful spacious room in the main building. We were up some steps, but they were shallow enough for Lecretia to ascend them. We ate dinner at the lodge, and it occurred to me how normal things were when we sat down together like this. The only assistance she needed was for me to cut her food up for her, so that she could manage with a fork in her right hand. Her left hand could no longer grasp one.
‘I’m going to take this case,’ she said. She had talked about it with me before, but speculatively, as though weighing up the pros and cons. But clearly she’d made a decision now.
‘Babe, are you sure? Do you really want to put yourself through this?’
‘Someone has to do it. Besides, it’s really interesting. New Zealand hasn’t had a case like this before.’
‘I understand why you need to speak to the media to raise the profile of the issue. But why would you want to go near a court? They’re horrible places.’
‘They’re not,’ she said. ‘I like courts. This is important.’
‘But it’ll be all over the news. There’s your privacy to consider. There are weirdos out there. Do you really want that sort of attention? I don’t want to be opening mail with threats from fundamentalists.’
‘If not me, who? The government w
on’t go near this. If this works, they’ll have to. It’ll be fun.’
She had a strange idea of fun, in my opinion, and I told her so.
‘Well, keep me out of it,’ I said. ‘I don’t want people thinking I’m pushing you into it.’
‘They won’t think that, silly.’
‘They will. You see someone on TV with an illness, doing something like this, and you start to suspect the person beside them. I don’t want people thinking I’m manipulating you.’
‘That’s ridiculous. It’s my case. You won’t even be involved.’
It was clear she wouldn’t be dissuaded. I was worried about the effect the case might have on my career. Would people doorstop us at our home? Would people try to hurt her? I could bear anything but the thought of Lecretia getting hurt, especially in her current condition. What if my wife fronted up to this and the media took a tough line on her? What if they assassinated her character? It happened all the time. I’d never met anyone as decent, as honest, as pure of heart as my wife. But this issue was so explosive I knew there was a chance that someone would try to malign her. My urge was to protect her, but even now, who was I to hold her back from something she clearly wanted?
Chapter 16
THE SEA WAS looking rough the next morning, which meant the whale-watching expedition was cancelled. We were flying back to Wellington that afternoon.
Lecretia was devastated. She’d been talking about seeing the whales at Kaikoura for years. She had a soft spot for big mammals. At Taronga Zoo in Sydney a few years ago she’d stood with her face pressed to the glass of the gorilla enclosure, eyes alight with adoration. It took a long time to talk her out of holidaying in Uganda after that.
I promised her we would be back one day to try again. She didn’t seem convinced. Perhaps she sensed this was her last chance.