Naturally Lecretia’s family and I are incredibly proud of Lecretia, and though none of us have any regrets about what she did, having this recognition of Lecretia’s very personal campaign is a comfort in the face of our great loss.
Christmas is going to be really difficult. For me and Lecretia’s family it is our first without her. Twelve months ago she was giving us direction on Christmas preparations, even as ill as she was: planning the menu, making sure the shopping was done, providing quality control on everything that came out of the kitchen. Christmas was Lecretia’s favourite time of year and she was very much looking forward to this one. Her nephew, whom she adored, is having his fifth Christmas and she was excited about seeing him open his presents. Her other nephew, whom she loved also, was yet to spend a Christmas with her.
Though Shirley, Lecretia’s mum, initially thought she might go a little less over the top this time around, Larry, her dad, has insisted that they don’t let standards slip. So there’ll be plenty of cooking and decorating to do, with pavlova, cheesecake, christmas ham, trifle and lots more besides.
As her husband, I find myself in a quandary. Do I spend Christmas with Lecretia’s parents and siblings, as I have done for most of the last twelve years, or do I spend it with my family, who have barely seen me since the funeral? I’m still working through that decision, but I feel a strange mix of wanting to be in three places at once while at the same time heading back overseas to lay low in a Mexican cantina on the Oaxaca coast so I can skip the whole event. Though I will always be part of Lecretia’s family, her death has catalysed a gentle reconfiguration of familial relationships that is yet to come completely to rest.
There is also the very exciting news that I’ve just this week I’ve signed a deal with Text Publishing, a highly awarded Australasian publisher, to write a book about Lecretia, which will be released some time later next year. I am very enthusiastic about the opportunity to tell more of Lecretia’s story, to share more about who she was, and to take people behind the scenes of Lecretia’s legal battle and her relationship with the media and her opponents, a fascinating side of the story with a few revelations that people are yet to hear much about. But tight deadlines mean that as much as I might want to avoid thinking about Lecretia and to try and contemplate a future without her, I’m obliged to pore over old emails and photographs and diary entries to reconstruct as much as I can of the past.
It has been a big year. Lecretia worked under the radar and with humility for her entire life but at the very peak of her illness she threw everything she had into a spectacular final act. In doing so she changed the course of my life, the lives of her family and potentially the lives of many New Zealanders for the better. And today she was recognised for that with an honour given to very few and I couldn’t be prouder of her.
But would we trade all that to spend just one more Christmas with her, provided it caused no harm or pain to her?
Absolutely we would. Without a moment’s hesitation. All of that and more.
Lastly, I need to make a personal plea on behalf of Lecretia. The public submission deadline for the Health Select Committee review of assisted dying is barely six weeks away, with submissions closing on the 1 February next year. Please make a submission. Even a short one will do.
You and the people you share this with have the power to dictate how Lecretia’s book will end. I hope I am writing a story of triumph and not a tragedy. Your submission will make a difference. You can visit this page for more information. Thank you.
A few weeks after Lecretia’s funeral, when the flowers had died and the phone calls became less frequent and the dinner invitations fewer, I found myself sitting around home a lot, drinking a bit, listening to music, doing nothing. I didn’t want pity, or sympathy, or ’to talk about it’. The only thing I wanted was the impossible – for the needle to skip a groove, to drop into a different reality from the one I was in, where Lecretia was still alive and well and with me and none of the last six months had ever happened.
I knew I was stuck and that I needed to do something. So I forced a change and I disappeared. I booked flights to the other side of the world, giving myself fewer than seven days before I left. I kept things open-ended. I started in the Baltic Sea, progressed to Denmark and Iceland, then to New York, and whilst there I chose to push my flights out and spend five wonderful weeks in Mexico, going west from Quintana Roo all the way to Mexico City. I visited places that Lecretia wanted to see, like St Petersburg and Manhattan, and visited places just for me. I was away for ten weeks in total, living out of a backpack, meeting new people and seeing new sights.
I lost weight. I grew a beard, a big ginger one. I ate at some of the world’s top restaurants, and ate street food barely fit for anyone. I swam under the midnight sun in the clear blue lake of Laugarvatn, and descended into the dormant volcano at Þríhnúkagígur. I saw the New York skyline from the Top of the Rock and watched a jazz master play the drums at the Village Vanguard in New York. I played pool in Mexican beach bars late into the night, and explored Mayan ruins in jungle thick with macaws. Some days I spent in contemplation, others I filled with activity to keep my mind from dwelling on my late wife. I spent time with good friends in New York and a few came to visit me on the coast of Mexico to laze with me on golden, deserted beaches. It was wonderful and healing, but every seemingly perfect moment was suffused with a single thought: Lecretia would have loved this. I found myself anticipating how she might react to things: fear, surprise, joy, delight.
One of the hardest things while travelling was seeing Christmas decorations. Lecretia used to love buying Christmas decorations from foreign countries. She liked the idea of decorating a Christmas tree with decorations from all over the world, and that, if she had kids, she’d be able to tell the story of where and when she bought this or that decoration. Seeing such things out there in the world – I just know how much it would have excited her. Seeing things that would make her happy, and for her no longer to be able to see them, is the thing that wounds me the most.
While travelling it seemed like Lecretia was merely in another place, out of contact, but still present somehow. It was coming home that was harder, because when I got here I felt her absence more keenly. Everything is the same, nothing has changed, except Lecretia is no longer here. And it is obvious that she is no longer here. And it hurts like hell because there’s no one I want to talk to more right now.
There’s not a day that goes by that I don’t think of her. But it’s only when I dwell on the sad times that I’m overcome. Most of the time I reflect on happy memories and they just bring happiness for having happened. It’s those last days that are hardest to deal with, the ones where Lecretia entered her terminal decline and we could do nothing but make her comfortable and helplessly watch. There were happy moments even in that though, when she’d smile or laugh or surprise us all by saying something, but mostly it was just unfair, unfair, unfair. I’m not angry: who or what can you be angry with? But what it feels like is a waste, how could someone so beautiful and intelligent and kind crafted over forty-two years be undone in a few short months? What would she have done with another thirty years? I wish I could have given them to her.
There’s no denying that Lecretia’s efforts have started something big. There’s a Health Select Committee enquiry underway. David Seymour has put his End of Life Choice Bill into the ballot. It has a couple of chances of being drawn before the end of the year. Along with Mr Seymour, a few other party leaders, including John Key, Andrew Little and James Shaw have expressed support for a law change, though in all cases they are speaking for themselves and not their parties.
I had a chat with someone today, a healthcare professional, who was very clearly in favour of Lecretia having the choice she wanted. Here was a person on the front lines, working with a lot of dying patients, and completely familiar with the gap between the rhetoric and the reality of palliative care, as Dr Rodney Syme calls it. They knew and felt that a patient having that choice was not going to interfere with them being able to do their job, that it’s arrogant in the extreme to deny a patient choices, and yet the organisation that purports to represent them holds a completely inconsistent view. Sadly, given the number of doctors and nurses I’ve spoken to who are supportive and would want the choice for themselves are frightened into silence for fear of being reprimanded by these associations.
It’s only when doctors or nurses find themselves in a terminal situation, such as well-respected Auckland doctor John Pollock in 2010 or Australian palliative care nurse Ray Godbold earlier this year, that they find the bravery to speak out about the choices they want. I think some of these professional associations need to take a good hard look at themselves and figure out whether they really reflect the varied views of their members and what those members would want for themselves in a terminal situation, or whether their executives are using their position as spokespeople to advance their own beliefs. If that’s the case, I hope their membership summon the bravery to recognise that and call them out. Because it really isn’t on.
I was also touched today to read the story about David Stephens in Canterbury, who is bravely speaking up about wanting some choices about the end of his life. My first wish for the courageous Mr Stephens of course is for a full recovery from his illness, and the best medical care and attention possible in support of that. But I do believe that if his illness takes a bad turn and he finds himself in a situation that is untenable to him, he absolutely should have a choice about how his life ends if he meets the necessary criteria and his wish is consistently held. Everything should be done to make Mr Stephens as comfortable as possible, to maximise the quality of life in every day he has. It sounds like he still has a lot to live for. If that’s done, he may decide that he doesn’t want or need to be assisted to die and that he’s happy to die naturally. And that would be a good outcome in some tragic circumstances. But he should still have some choice and control of his own destiny, like any of us would want.
Now that I’m back from travel I’m committed to doing what I can to help people understand why choices at end of life are important, and how empowering they are. With everything going on right now, I really am filled with hope that somehow and some way we will achieve some change. I remain optimistic.
If you’re wanting to make a submission to the select committee (please do!), I’ve collated some information about the process here. With the help of Lecretia’s fantastic legal team I’ve also put together a huge summary of all the findings and evidence in Lecretia’s case, which I hope will be a really valuable resource for people. I am so grateful to those people who have already prepared submissions, as it’s really important to do that if we’re going to see any change in the law. Please consider writing a submission.
To my disappointment, these past few weeks I haven’t been able to bring myself to write very much. Friends had suggested writing through my grief, diarising it, as a way of working through the process. But what I’m finding is that my thoughts and feelings are changing so quickly that I distrust whatever I write down when I come to reread it, and I fear that whatever I write won’t do justice to Lecretia’s memory, or that it is too self-centred or earnest. No matter how aggrieved or full of self-pity I might feel, the magnitude of my wife’s loss is infinite in comparison with mine.
The morning Lecretia passed, and I had to front up to the cameras that day for a press conference we had planned a few days prior, I was in shock. I’m not sure what carried me through. And that was followed by a week of planning, and decisions, and logistics, as we arranged for Lecretia’s funeral and her interment. I barely had time to process anything. I felt numb.
Since then I have been at home, catching up with friends occasionally, but otherwise keeping my own company. I am intending to go through Lecretia’s belongings, but I keep putting it off. Her beautiful face is still everywhere, anyway. She’s inescapable, and I do not want to escape her. Her mother and father visited me and took away some of her clothes and jewelry, which is a relief of sorts. I did wonder whether being here alone would make me want to move. Yet it still feels like home, and I still feel connected to her here.
The strange thing is how at peace I feel. After the years of worrying about Lecretia and what might happen to her, and the sorrow at seeing her rapid decline, and dealing with her hearing, and her passing, and her funeral, and the ancillary but compounding concerns of work and travel and money, everything has now come to a rest state. I can relate to C.S Lewis, when he describes his experience in A Grief Observed:
“… grief still feels like fear. Perhaps, more strictly, like suspense. Or like waiting; just hanging about waiting for something to happen. It gives life a permanently provisional feeling. It doesn’t seem worth starting anything. I can’t settle down. I yawn, I fidget, I smoke too much. Up till this I always had too little time. Now there is nothing but time. Almost pure time, empty successiveness.”
Interestingly I found his loss of faith, which felt honest and raw, more convincing than its reclamation, which felt like calculus.
It’s only now that I am beginning to really come to terms with what losing Lecretia means, and how much she was so foundational to who I’ve become over these past twelve years. With her gone, there is this massive absence, and things that I was so sure of, and that I took for granted, are no longer there. I keep reaching out to latch on to assumptions about life I thought I could be sure of, and find that what I thought was firm and solid ground has given way to an abyss.
All those things that Lecretia meant to me, I am still attached to. They abide in me like hunger and thirst. And when I try and draw sustenance from the same places, out of habit, there’s now nothing. I know that I will need to find things to fulfill those needs somehow – the physical, the mental, the social, the romantic – but I know it’s months or more likely years before that will happen. For now I’ll have to endure this hunger and emptiness and it will always be a feature of who I am. I’ve spoken to a few people who have lost partners and they say similar things. It takes time, and it gets easier, they say, but it never really goes away.
There is this strange sense that I am not mourning often enough, or deeply enough. That the intensity of my grief should be a perfect reflection of the passion I had for my wife. That I have short-changed her memory somehow, ridiculously, by not being utterly inconsolable for weeks on end. But the loss is felt in moments – as sudden pangs or vertiginous stumbles – and then they pass. It’s sorrow but equally a profound sense of unfairness.
And then again:
“… this separation, I suppose, waits for all. I have been thinking of H. and myself as peculiarly unfortunate in being torn apart. But presumably all lovers are.”
The injustice, if there was one, was not the passing itself, which was inevitable, but the timing, which was too soon. I feel for Lecretia’s parents most of all, as although all lovers must inevitably part, children almost always survive their parents, and that didn’t happen this time. And what an extraordinary expression of their love Lecretia was. How great their sense of loss must be.
I am not sure what comes next. I feel unsettled. I think I want to disappear for a while, perhaps visit some of the places that Lecretia had wanted to visit, but I don’t feel like I can until I get Lecretia’s affairs in order, which I have begun to do. I have known people to become reckless and irresponsible with their lives through grief. I don’t feel like that’s going to happen to me. I carry her with me now, and at the moment I feel like I have a duty to honour her memory by being my best self. But I am not out of this process yet, and I think I have some way to go. There is much to do.
Here’s the full text of the verbal statement I made to the press today, in response to Justice Collins’ judgment.
Thank you for coming today.
I wish it were Lecretia here today talking to you instead of me. Her fine legal mind would do a better job of interpreting Justice Collins’ judgment for you, and explaining his ruling. Her natural tact and grace would be better suited to delivering her feelings on the ruling. No matter how strong her view one way or the other, she would approach it in an understated way and with humility. But most of all, I wish Lecretia were here today talking to you because it would mean she was still alive. She died too young. She is hugely missed already and her family and friends feel an unbearable loss. She was a treasured wife, sister, daughter, aunt, and friend. She was an incredible lawyer, and an incredible person. We will miss her terribly.
When Lecretia began down this path, she did so in her typically understated style. After watching a documentary on Terry Pratchett late last year, who sought death with dignity before he lost his mind to Alzheimer’s, she sent a note to her friends describing the positive frame of mind she was in regarding her upcoming chemo, and included a link to the video, saying “I may become active in this area.” Earlier this year she contacted Andrew Butler at Russell McVeagh and asked if he would be willing to represent her. That was when her case began.
Lecretia knew that with her brain cancer’s growth being unpredictable there was a risk she might suffer before she died under conditions unbearable to her. She wanted to be able to choose to die at a time and manner of her own choosing, with the assistance of a physician. She wanted to squeeze out as much value and quality of her life as she possibly could, before she entered a phase of no quality, and of no value to her. In order to do that, she would need a doctor’s help to die.
She knew that under New Zealand law, there was an assumption this was unlawful, but that it was untested in criminal law, and that the law could be viewed as ambiguous on this issue. Parliament had refused to deal with assisted dying in the past, so, inspired by the successful case of Carter v Canada, she sought to achieve her ends through the High Court.
Lecretia sought a ruling in two parts. She wanted the High Court to declare that assisted dying was not unlawful under the Crimes Act, and that her physician would not be prosecuted if they helped her to die. This ruling was the only thing that could help her achieve the death she wanted within her lifetime without a parliamentary law change. If that were not possible, she sought a declaration that the Crimes Act was inconsistent with her rights and fundamental freedoms. This wouldn’t change the law, and it wouldn’t help her in her own circumstances, but she knew it might help compel Parliament to change the law and help others in future, who find themselves in a similar situation to Lecretia. After all, what happened to Lecretia could happen to me, or to you, or to someone you love. It could happen to anyone.
Justice Collins provided an interim results judgment on the first part – the Crimes Act interpretation – on Tuesday so that Lecretia could be aware of the outcome and know whether she might lawfully access physician assisted dying. Sadly, Justice Collins declared in that interim judgment that a physician helping Lecretia to die in accordance with her wishes would continue to risk prosecution.
On Tuesday night I relayed Justice Collin’s decision to Lecretia. I explained she would not be able to seek assistance to die, and nature would need to run its course, and that her mother and I would do everything we could to make her comfortable and pain free. We would accede to the wishes she had laid out in her Advance Directive and act out her wishes in accordance with the law.
Lecretia listened to me as I explained the decision. Even though she couldn’t speak, she was able to share her feelings through her expression. There was no mistaking her response. She was hurt and disappointed. She fixed me with a stare with her good eye as if to say: isn’t this my body? My life? Her breath slowed and she turned her head away. Her reaction utterly broke my heart.
Our hope turned to the second ruling – a declaration of inconsistency with Lecretia’s rights and fundamental freedoms under the Bill of Rights. As stated, this would not help Lecretia, but in future, it might help others.
We have received that ruling in the judgment today and we are grateful for the efforts made by Justice Collins to release his decision so quickly. We are also grateful to the legal team who brought Lecretia’s case to this point, and to the Crown and the interveners for their contributions to the case. And as the debate has also played out in the media, we’re thankful that even those that didn’t share Lecretia’s views engaged in a robust and civil discourse which, though spirited, didn’t once descend into the personal. We were delighted to find ourselves in the midst of a mature and passionate debate, even as we vigorously disagreed on most things.
We are dismayed by Justice Collin’s judgment. In some ways, I am relieved that Lecretia was unconscious and unresponsive when we received it, so she didn’t have to hear the news. Justice Collins found in our favour in relation to the evidence before him, but his interpretation of the purpose of the law meant he could not find aid in dying was available to Lecretia nor could he find that not having access to aid in dying was inconsistent with the Bill of Rights.
Justice Collins found that while palliative care had made great advances, it was not able to relieve all suffering, including for pain and psychological and emotional suffering. He emphasised the importance of individual autonomy and dignity. He found that Lecretia was not vulnerable and that her wish to have access to assisted dying was, quote “a rational and intellectually rigorous response to her circumstances” unquote. He said it was important to ensure doctors did not make a decision based on their assumptions about people’s vulnerability as this would devalue respect for individual autonomy. He found that without assisted dying Lecretia was put at risk of premature death through suicide, for fear that she would be incapable of doing so when her condition deteriorated, which engaged her right to life. He accepted evidence that, under the status quo, others who are terminally ill have taken their lives prematurely while they were still able to, robbing them of a longer life.
Yet despite these findings, and acknowledgement of the potential suffering and risk of early death for those with a terminal illness, Justice Collins felt unable to grant the declarations Lecretia sought. A core reason was that, in his view, the provisions under the Crimes Act required protection of not only the vulnerable, but even for people like Lecretia, who are not vulnerable, and whose wish for assisted dying was a rational response to their terminal illness and potential suffering. He did so, based on his understanding of the New Zealand case law and notwithstanding that that approach to the law is not shared in other jurisdictions including the UK, Canada and South Africa. For us, as a family, it is terribly disappointing that the Judge was prepared to go as far as he did but not take this last crucial step.
The judgment has starkly highlighted that the status quo is far from ideal; that people are at risk of intolerable suffering and are at risk of ending their lives earlier than they would otherwise. Although we did not get the rulings we sought, the judgment is very clear: the law as it is, is paternalistic, overly-protective and rooted in the past. It is not the law as it ought to be.
Justice Collins was clear that it is for Parliament to address a change in the law. Through Lecretia’s efforts we now know the law. So Parliament now knows what has to change.
The New Zealand parliament has twice voted down assisted dying legislation introduced via private member’s bill at the first reading, once in 1995 and again in 2003, preventing the proposed legislation from getting to select committee stage where the facts and overseas evidence could be exhaustively reviewed. This issue has not been given a fair hearing in parliament. In effect, New Zealand’s politicians have twice voted not to have a debate properly informed by the findings of a select committee. At the present time, there is no assisted dying bill proposed by the government or in the members’ bills ballot.
Support for the legalisation of physician assisted dying in New Zealand has been consistently shown to be between 70-80% of the New Zealand public by various polls.
That support has been reflected by the number of messages and good wishes Lecretia has received. We have received hundreds of messages from people from all walks of life and all political persuasions, supporting Lecretia’s cause. We have had messages from doctors and palliative care professionals and nurses offering their support but afraid to speak out for fear of angering their employers. We have had dozens of stories from people who have lost loved ones in awful circumstances and under substandard care – people who have needlessly suffered in the gap between palliative care’s rhetoric and its reality. We have had messages from young people who had never considered the issues before, but now have no doubt that this law needs to be addressed.
In the end, Lecretia was fortunate that her death happened quickly, and that she was cared for by some very fine health professionals from hospice and DHB. Others are not so lucky. Lecretia believed those people should have choices, and that the law should respect those choices and not tell competent, rational adults that they don’t know their own mind. She would not support a law change that endangers the vulnerable. She would support heavy penalties for those that would attempt to coerce or exploit the vulnerable. But she believed it is possible for a law to be crafted that protects the vulnerable, while not being overly protective of those who wish to make fully-informed choices about the end of their life.
Let’s not give into fears and speculation and say it’s too hard. Let’s not say the risks are too great. We can learn from other countries – we do not need to panic over sensational stories from opponents – we do not have to copy those countries outright. But let’s not say people must suffer against their will because we’re afraid of change. It’s not impossible. We are not a nation of cynics. We are a nation of dreamers and we are free to have a vision and to build the nation we want. Lecretia and I are optimists. We believe the law can be shaped to do what we all want it to do.
We must respect the autonomy and dignity of terminally ill people like Lecretia and say yes, we respect your wish to go your way. Anything else is paternalistic. Anything else says I know better than you. We do not have the unique perspective of the one dying. We can empathise with their suffering, but we cannot truly know it. None of us living has died before. None of us is an authority. None of us has all the answers. I say – let the person who is dying choose the manner in which they die. If they request help, and a doctor agrees to help, who are we to have laws to stand in the way of that compassionate act? The intent of both parties is to end suffering. It just so happens that sometimes, when that suffering is so great, the only release from that suffering is death. That is not murder. That is not suicide. That is mercy.
I am calling on our 51st parliament to work across party lines to bring together a select committee to work through the issues and to hear from the public. The public reaction to Lecretia’s case has been huge. I am calling on our elected representatives to have the courage to debate this issue, to show a quantum of the courage my wife has shown these past months. I implore our Prime Minister, who only two weeks ago said publically that he would welcome a debate – to actually initiate that debate and to not defer it and wait for a private member’s bill which may not see it debated for months or years. This debate needs to happen now. Prime Minister, I urge you to give the public what they want and start the debate. I urge you to follow my wife’s example and to be a courageous leader. I urge you to lead on this issue. It is long overdue. Now is the time. Let us give Lecretia her legacy.
Lecretia passed away this morning at 12:35am from natural causes. I am unable to express my feelings right now. A few weeks ago, Sir Geoffrey Palmer, 33rd Prime Minister of New Zealand and legendary law reformer, sent me this tribute he wrote for Lecretia. I had been saving it for the right time. This might be it.
I have known Lecretia for many years from the time she first came to work at Chen & Palmer after working as a lawyer in the UK. She was by then a seasoned lawyer having cut her teeth at Kensington Swan before taking her OE. I am not an easy person to work with, as I am impatient and demanding. I soon found that Lecretia was incredibly industrious and not to put to fine a point on it, a workaholic. I found her easy to work with and I came to trust her accuracy, her judgment, and her discretion. She is my kind of public lawyer.
Later when I went to the Law Commission she applied for a job there and was top of the field and selected. She made a wonderful contribution at the Commission and worked directly to me on several important projects including alcohol and war pensions both of which reached the statute books. Her terrier like qualities in running down the meaning of words in old statutes was awe inspiring. I recall particularly her work on section 17 of the War Pensions Act 1954. I did not believe it was possible to say what that provision meant, but after three weeks Lecretia figured it out. All the administrative law work on the alcohol project was hers.
Lecretia became not only my professional colleague but also my friend. I recall Matt and Lecretia visited us in Nelson and said they were going to get married. What a wonderful couple. A little much wine was drunk that night. Lecretia is an incredibly private person. She never sought the spotlight. And she is extraordinarily taciturn. But deep down there is a person of great compassion, empathy and judgment. Lecretia has got to be one of finest human beings I have ever met. When her sickness struck she bore it with a fortitude and steadfastness that was amazing. Her idea to turn her experience into a law reform project was typical of her. What a brilliant idea. She always thinks of others first. She never complains. I salute her.
On Friday morning, less than two days after the end of Lecretia’s hearing, we woke and began the task of getting Lecretia out of bed to begin her morning routine. However, despite being awake and lucid, her paralysis had taken a firm grip on her whole body, and she had become as rigid as a plank, unable to bend at the waist. Her brother and I worked to lift her together, and almost had to force her to bend so that she could get into a seated position.
We took delivery of a hoist that morning but when the hospice doctor saw Lecretia at lunchtime, he said that what she really needed was a hospital bed. This was duly organised, but coming into the long weekend meant that the delivery driver got his message late in the day and no doubt had plans for the weekend other than answering calls and driving a bed all the way back to us from the Hutt Valley.
Further calls to the delivery company on Saturday morning were fruitless. One of the nurses, sharing our frustration, went above and beyond and organised for us to be able to pick up a bed from the hospital if we could organise our own transport. If that hadn’t have happened, I have no doubt we would have ended up with Lecretia needing to be moved out of her home and into either the hospital or the hospice via ambulance so that she could be comfortable, which would have been against her wishes. Lecretia’s friend Angela helped me and her brother Jeremy pick up the bed and put it in the back of her SUV. Once it arrived, it took a good hour to figure out how to put it together.
Thankfully, by early Saturday evening, and through the generosity of the district nurses pulling strings on a long weekend, we had Lecretia settled in a hospital bed in our living room, able to be elevated or moved to her side and so on.
I am not relaying these facts to be critical. I am hugely grateful that between hospice, the DHB and ourselves were able to work together to get a good result for Lecretia, but I have to admit it was pretty stressful. It would have been a struggle for someone without Lecretia’s strong support network.
Lecretia is not well. Her eyes are closed most of the time. She is having trouble swallowing. She is talking less and less. But she is facing all of this without complaint. She says she has no pain, and she has not taken any painkillers. This morning she ate feijoas, like the ones from her parents’ home in Tauranga. She is laying in her bed with a quilt sewn for her by a friend who worked with her at the Law Commission. Our cat, Ferdinand, has been sharing her bed with her, laying in her lap, or at the end of the bed.
I’ve been holding her hand and talking about holidays we’ve taken together. Things we’ve seen and done and food we’ve eaten. One of her favourite memories was floating in the lagoon at Aitutaki in the Cook Islands. I describe it to her: the sand, the smell of sunscreen, the salt in the air, the warmth of the sun and the water. The sense of our time there being lazy and long and as vast as an ocean. It makes her smile.
Sometimes she says to me ‘let’s go’. I’ll ask where and she’ll say ‘anywhere’. She wants me to get her in the car and start driving. As though her illness is tied to this place and that if we got far enough away from it she could cast it off like a veil. I wish that were true.
Every so often a tremor comes. Her whole body shakes and vibrates. The pressure of the tumour on her brain stem is causing her brain to reconfigure, to shift against itself like restless earth, causing her body to tremble, the frame of the bed shaking and rattling. And then it subsides, and she rests.
Lecretia’s choice is imminent, and we don’t know yet if she will get to make it. She’s been through a few things already that she would rather not have had to go through, but she has taken all of this in her stride and with as much grace and dignity as she can muster. Would she have chosen to go already if she’d had the choice? Surrounded by love and support like she has been, I doubt it. But she doesn’t know what is yet to come, and what she will have to endure, and that must be terrifying. I know that having the ability to make a choice about how her life ends would give her more strength to face it.
It scares me that in not having the choice she had to consider suicide because she had no certainty or control as she headed into the unknown. Because these moments we are having now are so precious and we would have lost them. I feel for those families who have lost loved ones early because those loved ones weren’t allowed to have the death they wanted.
She is facing this as she faces all things: with tremendous bravery and courage. I am so proud of her. I love her so much. I don’t know what she will ultimately choose, or even whether she will get to. But for Lecretia, it was always having the choice that mattered, not the choice itself. We are hoping for a judgement that acknowledges and respects Lecretia’s free will and autonomy over her own life; the ability to decide how she lives it and how it ends. That is all she wants.
It’s a big day tomorrow, and we have been looking forward to it now for weeks. Lecretia would like to be in the courtroom for the beginning of the proceedings, but I have my doubts as to whether that will be possible. I am sure she will be there for part of the day at least, but as to when and for how long it’s a little hard to say.
We are having a lovely weekend. Some close friends of Lecretia’s have flown in from around the country and from Australia to be with her. This afternoon she’s having an afternoon tea with some of her girlfriends and her brother and father will be here for dinner this evening too. She’ll be having an early night to make sure she is well rested for the coming week.
It’s been disappointing to see some of the recent media coverage of our opponents’ views so close to the case. Sadly, Lecretia’s opponents are trying to turn this into something bigger than it is, employing tactics like the slippery slope argument to prey on people’s fears. It will be good to see these claims subjected to the scrutiny of the courtroom where they’re unlikely to hold much water.
Canada tried a “slippery slope” argument in Carter v. Canada. There was a whole section debunking it in the judgment, but this paragraph from the judgment best summarises the Supreme Court of Canada’s position (para 120):
Finally, it is argued that without an absolute prohibition on assisted dying, Canada will descend the slippery slope into euthanasia and condoned murder. Anecdotal examples of controversial cases abroad were cited in support of this argument, only to be countered by anecdotal examples of systems that work well. The resolution of the issue before us falls to be resolved not by competing anecdotes, but by the evidence. The trial judge, after an exhaustive review of the evidence, rejected the argument that adoption of a regulatory regime would initiate a descent down a slippery slope into homicide. We should not lightly assume that the regulatory regime will function defectively, nor should we assume that other criminal sanctions against the taking of lives will prove impotent against abuse.
But wider issues aside, when it comes down to it, Lecretia’s case is about an ill woman who has been failed by a history of successive governments who have refused to deal with the issue, and who is now seeking peace through the only path available to her that has any chance of giving her relief in the time she has: the courts.
Win or lose, we will achieve some certainty for Lecretia. We will know whether she can lawfully choose not to suffer if things become unbearable, by requesting assistance from a physician to die, or whether she must suffer against her will to satisfy an interpretation of the law that entrenches its inadequacy for dealing with the nuances of cases like hers. We will find out if the law allows Lecretia to have the choice she wants under current legislation, or whether the law needs to change so that people like Lecretia don’t need to suffer unnecessarily.
We have been told the hearing should run for three days, which is going to be quite exhausting for Lecretia, but she is determined to be there as much as she can. Justice Collins has indicated that he will be reaching a decision as quickly as he is able, which is a great relief to us.
This all comes as we received news earlier in the week that Lecretia’s blood tests indicated she could safely resume chemotherapy if she really wanted to. Lecretia has opted to resume treatment, despite an admission from her oncologist that it likely won’t make any difference to her prognosis. Nevertheless, she is determined to live and to fight her cancer as much as her body allows her to, so she restarted her anti-cancer drugs on Wednesday this week. She wants to be here for her mother’s 60th birthday next year, and for our 10th wedding anniversary. She wants to see the Taj Mahal.
It’s hard to see how someone so desperate and determined to live could be seen by the law as the same as a hypothetical suicide who, despite having no terminal illness, wants to die. But as it happens, we will find out whether there is a distinction over the next few weeks.
I am sure that people who recommend obscure clinical trials or alternative treatments mean well. They think ‘this could really help them!’ and they only look at the possible upside. We might be grateful for the help, after all, for being pointed to something we might have overlooked. It’s a longshot, but we just might save Lecretia’s life, right?
But do those well-meaning people consider the work that puts on us and on Lecretia? Do they consider what happens if we follow it up and it doesn’t help? That, if it were pursued, and it failed, that we would hold a grudge against that person forever, for wasting what could have been quality time with a desperate, dying person on a false lead?
At this point, with Lecretia’s time left so precious, we can only look at options that have a scientifically-based track record of helping people with Lecretia’s exact condition. We are terrified of Lecretia spending her remaining time in hospital through side effects and complications, which is the last thing she wants, but which is a real risk with trials and experimental therapies.
For example, a very intelligent and well-connected friend of mine reached out to me with an offer of help, without really knowing much about my wife’s medical condition or current circumstances. He had a contact that had a PhD and had helped with ‘all sorts of cancers’. His heart was in the right place, and I know he was only trying to help, after all, everyone wants Lecretia to live, but below is a letter I had to write him in response. I hope he doesn’t mind me publishing it, because in part I would like to send it to everyone who sends me a link to an article on the internet, or a lead for a clinic in Germany or Russia, insisting that we have to follow it up. In most cases, if the option is any good, we have already investigated and dismissed it, or they either cannot help Lecretia or she is ineligible for their trial, or they have refused or ignored our pleas for compassionate admission.
Lecretia is already taking all the alternative supplements she can that have no or low risk of harming her. We have worked and continue to work hard for my wife, trying to balance reasonable health interventions with what her body will allow, while trying to maintain her quality of life. But more than that we are taking into account Lecretia’s wishes and what she wants to do in terms of treatment. Her scope for exploring new approaches is very limited.
My wife has suffered through surgery, radiotherapy and chemotherapy and is now confined to a wheelchair, losing her ability to focus, and her ability to see. She has entered palliative care because her oncology team believes nothing more can be done for her from an anti-cancer perspective. We have received second and third opinions, and they concur with that assessment. The expectation is that she has limited time to live.
Giving us false hope at this point would be extraordinarily cruel. We have been sent so many false leads, and we have some quite nasty people making us feel guilty because we aren’t chasing their miracle cure fantasies. We are coming to terms with the implications of Lecretia’s health, and making us feel guilty for accepting what is naturally and likely going to happen is just unkind. We are likely going to have to deal with the loss of someone we love deeply. Dealing with guilt too will just complicate and intensify our grief.
So I ask that if you do make a suggestion to me, you do not make me feel guilty if I turn down your help. Because my wife cannot travel, has no desire for further treatment that has little chance of working, and it would take an extraordinary opportunity to make us want to divert my wife from her current path of seeking quality of life from her remaining time on this Earth.
If your lead fails, and I expend money and time and effort on it, then that would be an enormous burden on you. You will have screwed over a grieving family. So before recommending anything, please consider whether you really want that responsibility? How confident are you that it’ll work? On what basis? Medical knowledge and experience? The fact it worked with Lecretia’s precise medical condition? An article you read? Did you evaluate the sources? Because that’s what I’ll have to do. I’ll have to spend time poring through scientific articles to evaluate the chance it’ll work for Lecretia, spend mental energy on a judgement call on whether it’s worth putting everything on the line for, instead of spending time with her. Or is it just hearsay? A hunch?
We don’t have time for ‘it might work’ or ‘what have you got to lose’. We could lose everything. We could lose our last remaining precious moments with Lecretia. That is what is at stake. We only really have time for certainty.
I get recommendations all the time from unqualified strangers, and I can dismiss those. Dismissing a recommendation from a person I respect is a harder thing to do – and I hate to do it. So please be careful and think hard before putting me in that position.
I am sorry for being so blunt with you. But I worry that you may not appreciate the enormity of our personal situation and how involving yourself in the way you propose might affect our relationship, which I value greatly.
As a result, my friend replied that he would follow up with his lead and qualify it before coming to me with it. He has changed tactics from putting the work on me to doing the work himself to really evaluate what he is proposing and whether it can help Lecretia in particular. I’m utterly grateful for that.
If you’re the sort of person to recommend medical treatments to strangers with the intent of trying to help, and I don’t mean just Lecretia, I mean to anyone who is facing a terminal illness, my advice would be to do the same. Be skeptical. What is the science? Do you really have the skills to evaluate the science? Is there any science at all? How many failure stories sit behind the success stories? Have you qualified the truth of the success stories? How similar are the circumstances to the person you are trying to help? And if this is so successful, why hasn’t it been peer-reviewed? Why hasn’t it been adopted by the oncology community? Why isn’t it part of the standard of care? It costs you nothing to send a link, but it can cost a family a lot to receive it if it isn’t qualified and its veracity and relevance evaluated. Please don’t put the work on the family. They just don’t have the time.
If you want to advocate a treatment, I’d suggest that the right approach is to lobby the scientific community to evaluate and peer-review it, rather than pushing it on to desperate families who are already agonising over every medical decision.
We want to imagine that all cancer is treatable. That we can always beat it. That there is always an answer. The statistics tells us that that is just not true, and that is the sad reality. Lecretia hasn’t given up yet, and she has no desire to die, but she is facing very tough odds. We have to be very careful about next steps, so that we can give her the best possible outcome, without putting what she has left at too much risk.
Today was a significant day for Lecretia. After seven and a half years with the Law Commission as a senior legal and policy advisor, she has handed in her resignation for health reasons. I have discussed Lecretia’s contribution to the Law Commission before, and though she has been on leave from the Commission now for a couple of months due to health, she was determined to participate in a Commissioner meeting to discuss progress on the Law Commission’s Review of Contempt of Court. That meeting was today, her last day at the Commission.
Lecretia and the Law Commissioners earlier today for a progress meeting on the Review of Contempt of Court
The meeting was hosted at our home and was an opportunity for Lecretia to review progress on the report with all four Commissioners. They themselves were determined to receive Lecretia’s perspective on the report’s progress, so were eager to visit her. Though she was happy to help, their attendance was contingent on them bringing with them some almond croissants from Louis Sergeant’s. They complied.
Lecretia is gradually adjusting to more limitations. Last week we had planned to travel to Auckland for a cuisine tour. We’d made bookings at The French Cafe and The Grove and Sidart, but unfortunately Lecretia’s health would have made travel very difficult so we cancelled. Lecretia was naturally disappointed but I think I’ve worked out a compromise. I’ve organised an accomplished chef to come and cook for Lecretia at our place later this week. And two weekends ago we organised an event at a close friend’s here in Wellington with the lovely folks from Nikau catering for us.
We have been in touch with Mary Potter Hospice and they have been absolutely fantastic. They have dropped off an electric armchair which reclines and also elevates and tilts forwards to help Lecretia get into a standing position, which assists us a lot as Lecretia’s paralysis shows no sign of easing up.
Our home is gradually evolving into an accessible environment of ramps and rails and stools and walking aids. It calls to mind an article I read a couple of weeks ago that a friend linked to on Facebook, about a 90-year-old woman employed by Ideo, the legendary design company that came up with the first computer mouse. Ideo’s ahead of a trend. With our aging population, there’s a lot of money to be made designing for people in failing health.
I am worried about Lecretia’s vision, as it’s where we see the most change right now. She’s always had the hemispatial anopsia, but lately even her good side is giving her trouble. She’s begun seeing double and her perspective is off – things aren’t where she expects them to be. An eyepatch seems to help a little. But she can’t reliably tell me how many fingers I’m holding up, which concerns me somewhat.
Lecretia is doing a fair bit of sleeping at the moment, but when awake is as fiery as ever, poring over the evidence and counterevidence for her upcoming proceedings. Reading is more difficult for her now, so I do need to read a lot to her, but she is quick to pick up on things that are wrong or where she feels she is being misrepresented.
We’re focussed on keeping Lecretia in the best possible health for next week’s hearing. We are eager for it to start.
If you’ve been following Lecretia’s story, you are probably aware that Lecretia is going to be on TV One’s Sunday tonight at 7pm, talking about her illness, her action in the High Court, and a few other things besides. We’re pretty nervous about it, as you can imagine. Both Lecretia and I are resolutely private people, but we do understand the public interest in Lecretia’s case and the need to help people understand where Lecretia is coming from, which is why we agreed to three days of cameras and interviews, at a very challenging time, to get the story told.
If Lecretia was able to choose the death she wanted, most people would probably have never known about her. My beautiful wife has lived a full and rich existence, greatly appreciated by those that know her. She is revered and respected by her friends and colleagues. Her cancer has struck us as utterly tragic, and utterly, utterly unfair. But if Lecretia had her choice, we would be working through it as a family and when the time was right, we would be coming together, saying goodbye, grieving and being privately devastated, and there would be no need to ‘tell the whole world about it’. Lecretia would have lived a wonderful life, with a poignant and precious closing chapter, a life lived as a gift to herself and to the favoured few that knew her.
But as Lecretia’s cancer forces her to confront her own mortality, she realises that she isn’t likely to have a death that is agreeable to her. The odds are that the essence of who she is will gradually unravel, and she will lose a lot of what she values about her life. Though she might remain alive, she would not truly be what she regarded as living, and she would be forced to continue to exist in a way in which she does not wish to be remembered. To avoid this, she has only one option: take her own life. And that would rob her and me and her family of quality time with her.
Her court case is not going to be a forum for a broad debate about end of life choice, as much as some parties would like it to be. It is going to be about her, and her alone. She doesn’t have the luxury of time for politicians to make up their mind about the issue, and they certainly don’t appear to be in any hurry to have a conversation about it. So Lecretia is doing what’s right for her, and taking the only action available to her, to get the answers she needs about the Crimes Act when viewed through the lens of the New Zealand Bill of Rights.
Personally, I think that it’s a disgrace that she’s being forced to take action in a courtroom, and that interest groups who would rather see my wife suffer to satisfy their own warped and dogmatic principles are doing their best to stand in her way. The way I see it – they are free to die their way, Lecretia should be free to die hers. And it should be nobody else’s business but hers and the consenting physician that agrees to help her.
Some people compare this with suicide. It is really very different. It is not as if, by not doing this, she would miraculously go on living. The difference between her and a suicide is that she is genuinely dying already. That is a fact, and we can’t change it, as much as we wish it weren’t true. She doesn’t have the choice to live. If she had that choice she would take it. This is not a choice about if she dies, it is a choice about how she dies.
If you believe our politicians should be addressing this issue and that Lecretia and others like her shouldn’t have to go through the courts to get the choice they want, there are several ways you can help make that happen. As for us, we are focussed on the hearing, so that hopefully Lecretia can be granted the choice that she desires. Thanks for taking an interest in her journey.