In her final months, my mother would say that she wasn’t afraid of dying, but that she was afraid of pain. She had been traumatised – we all were – by my father’s death two years earlier. That had been long and slow, excruciating for him and almost unbearable to witness. We had all done everything we could back then – for him and for her – but there were frustrations and regrets, and wishes that things could have been gentler. Grief is a messy beast, and harder to live alongside when it comes with what-ifs and why-couldn’t-we and how-could-we-have-done-better.

So after her own terminal diagnosis, Donna was clear about what she most wanted for herself. It wasn’t more time – she was philosophical about reaching the end of her life even when we weren’t. What she wanted was as little pain and as much dignity as could be managed. Her life had been about graciousness and elegance, and she wanted her final chapter to match the ones that had gone before.

She got that, I think. I am certain if I could ask her now, my mother would use that phrase, “a good death”. We were lucky – privileged – to arrange hospital level care in a rest home, staffed with extraordinarily kind nurses and caregivers. Donna’s body was frail, but she remained sharp as a tack until her last day. I was lucky – privileged – to be able to stay right beside her to be her voice when she could no longer use her own. I channelled my mother’s assertiveness to argue, insist, make calls, seek help, call for back-up. Not everyone is able to arrange their lives to do that.

I felt there was a tension at times between what health professionals need to be seen to do in terms of protocols and medications, and what the patient might choose in terms of being – as my mother said – “floating through it”. The scales are tipped towards keeping someone on the planet rather than helping to ease them off it. You need a loud voice to find the balance. Not everyone can find a loud voice when they need it.

Death (and I know my mother would agree with this, because we talked about it many times) is one of life’s bookends. We work hard to make the other bookend – birth – as safe, as free of pain and trauma, and as welcomed as we can. That’s what the End of Life Choice Bill aims to achieve for terminal patients – an acknowledgment that when death comes, we can allow people to leave with the least pain and trauma, and the most dignity. To let them continue to have a voice, even in their final moments.

We have just marked one year since Donna died. You never go back to being the person you were before, but you learn to wrap the grief more gently into the person you are now. You find ways to honour them. Which is why I will be voting Yes for Compassion in this September’s referendum.

Tim Clarke and Catherine Marks are part of the pro bono legal team who supported Lecretia Seales to bring a legal case to New Zealand’s High Court in 2015. Here, they remember Lecretia as an influential legal reformer, colleague and friend. 

_____

We had the privilege of knowing Lecretia as a friend and fellow lawyer for many years before Russell McVeagh represented her legal case in 2015. 

Four years’ earlier,  Lecretia had been diagnosed with brain cancer. As the disease progressed, she made the courageous decision to go to the High Court to ask for assistance to end her life if her suffering became unbearable. For us, and others on Lecretia’s legal team, being involved in her case was one of our proudest but saddest times as lawyers. 

Lecretia was happily married with a flourishing legal career. She did not want to die. Sadly, that choice had been taken from her by an aggressive brain cancer. As she faced the end of life, Lecretia did not want to suffer against her wishes. 

In early 2015, a legal case in Canada’s Supreme Court held that a total prohibition on assisted dying was a breach of the right to life. The court highlighted that without assisted dying, terminally ill people were taking their lives prematurely, while they were still physically able. As a lawyer, Lecretia understood the significance of this and believed we needed a more compassionate approach in New Zealand. She decided to bring her own legal case to change the law. 

When Lecretia told us her plan, she had our full support. Together, we began a journey gathering an enormous amount of evidence from other jurisdictions and experts around the world. By the end, there was no question for us – the evidence showed the current law was unacceptable. Other countries had designed safe regimes that alleviated suffering and prolonged life without putting those who are vulnerable at risk. Why shouldn’t we have the same in New Zealand?

In Lecretia’s case, the judge Justice Collins found that palliative care did not alleviate all suffering, that Lecretia’s wish was rational and that the current state of the law put her at risk of premature death (through taking her own life while still able to do so). However, ultimately he considered it was for Parliament to make a decision whether the law should be changed. Lecretia was not granted choice at the end of life and very sadly died the following day.

Lecretia was an intensely private person. Taking a case to court was a big challenge. Yet she was also a committed law reformer. She fought this case not only for herself, but for other people with terminal illness in New Zealand. She hoped that, even if her case didn’t succeed, that it would start a debate and instigate legal reform. And this is what has happened.

Her case stands as an important chapter in New Zealand’s legal history. It provided the genesis and evidential foundation for what is now the End of Life Choice Act – a piece of legislation you will be asked to vote on at the upcoming election on 19 September. In our view, it is one of the safest laws in the world, with rigorous safeguards.

We miss Lecretia very much, as do her family and many friends. She was loyal, funny, determined and principled. We take some comfort in knowing how chuffed she would be that her efforts have resulted in discussion and debate, and legislation that will now be voted on at the next election. She continues to be an inspiration to us and many others.

Please, help us finish the fight Lecretia started. Vote YES in the End of Life Choice referendum on the 19 September.

This is the introduction to the first Lecretia Seales Memorial lecture I delivered at the New Zealand Parliament on 29 August 2016

Lecretia Seales died of a cancerous brain tumour in Wellington on 3 June 2015. She was 42.

Employed by the Law Commission as a senior legal and policy adviser for eight years, Lecretia had an abiding interest and competence in the field of law reform. She lived in Karori with her devoted husband Matt Vickers and their Abyssinian cat Ferdinand. I feel privileged to have known Lecretia well, both when I was President of the Law Commission and earlier when she worked with me at the law firm Chen, Palmer and Partners, public law specialists. Lecretia was a lawyer of high quality and she had a passion for the law.  She hailed from Tauranga where her parents Shirley and Larry still live. She loved cooking and dancing. She had the gifts of friendship and empathy.  I have met few people as determined and strong as she was. In the case she brought in the High Court concerning her impending death one witness described her personality as “young, bright, independent, perfectionist.” I concur.

Lecretia was diagnosed with brain cancer in 2011. Earlier she began suffering from severe headaches and her general practitioner referred her to a neurologist. An MRI scan, some surgery and pathology tests led to a diagnosis of a serious and cancerous brain tumour, with tentacles reaching all through her brain. She underwent surgery of a most grave character, followed by six weeks of intensive radiation therapy that left her scalp very burnt. She continued to work and live as full a life as she could, despite tiring more easily and suffering from deteriorating eyesight. Lecretia was determined to live both her personal and professional lives to the full in what time she had left. And she did so with gusto. She continued working at the Law Commission until a very late stage.  She travelled overseas to dance the tango in Buenos Aires. She went to San Francisco and Bermuda and then to Morocco in October 2014,

by which time her mobility was seriously impaired. Chemotherapy worked well until August 2014, but bad symptoms set in and Lecretia’s life became increasingly difficult.  She had to have a walking stick. She could not drive. She needed help to stand up. Her left foot became useless. She became seriously impaired and could no longer dress herself without help, she experienced increased pain. 

There could be no certainty how her illness would progress. It was clear to her and all her whānau that death was inevitable and time was running out. She wanted the option of determining when she died, if she began to experience enduring suffering that was intolerable. As she told the court “If my death is manageable I should be the one to manage it.” The prospect of a slow, unpleasant, painful and undignified death weighed heavily on her mind. She had contemplated whether she could take her own life unaided, but this was not a choice she wanted to make. And were she to take such action she would have to take it earlier than if a doctor were available to assist. She felt deprived of choices. Her evidence was “I want to live as long as I can but I want to have a voice in my death and be able to say ‘enough’.”

Lecretia took a bold and courageous step. She decided to use her personal situation as an emblem of why New Zealand law should be changed. For a person as private as she was this must have been a difficult decision. It was not a decision she took lightly. She researched the law and discussed it in depth with a number of people, of whom I was one.  She studied the very recent right to physician assisted dying established in the ground breaking decision of the Supreme Court of Canada on February 6, 2015. There, a person in a similar position to Lecretia won her case. It was held the Canadian Criminal code infringed the Canadian Charter of Rights in a situation like Lecretia’s, so that a blanket prohibition on physician assisted dying was constitutionally invalid. The New Zealand Bill of Rights Act 1990 is similar in many respects to the Canadian Charter under which the Canadian case succeeded. The New Zealand Bill of Rights Act borrowed heavily from the Canadian Charter. It should be noted that Canada also has a criminal code similar in its historical derivation to New Zealand’s and the two systems remain in touch with one another. Lecretia reached the view that there was a fighting chance her case could succeed in the New Zealand courts. Even if she did not prevail, Lecretia reasoned, the evidence would demonstrate why New Zealand law should be changed. Her decision to use litigation as a law reform project was typical of the dedication she had to a legal system that is up to date, fair and just.

Lecretia was a law reformer. Her personal situation convinced her the law should be changed. She was right. New Zealanders have the power to change the law by voting for the law Parliament has already passed. Please vote for it at the general election. 

 

¹ Affidavit of Lecretia Seales, 9 April 2015 at [47]–[54].

² Carter v Canada (Attorney-General) 2015 SSC 5, (2015) 1 SCR 331.

The Yes for Compassion campaign, aimed at ensuring New Zealanders are well informed ahead of ultimately voting yes in a landmark vote on the End of Life Choice Act, launched today.

Yes for Compassion released two videos from New Zealanders living with terminal illnesses, both of whom are urging fellow Kiwis to vote yes for them. View these here.

A referendum at the General Election on 19 September, will ask voters whether they support the End of Life Choice Act. If passed, the Act will give terminally ill New Zealanders, who meet strict criteria, the option of requesting medical help to end their lives.

Only mentally competent adults, with six months or less left to live would be eligible to use the law. Assisted dying requests would need to be approved by two doctors who carry out thorough checks and who can immediately stop the process at any stage.

Former hospice doctor and spokesperson for Yes for Compassion, Dr Libby Smales, says with exactly three months until Election Day, Yes for Compassion wants to ensure New Zealanders have all the facts they need to make an informed yes decision.

“In New Zealand some of us still suffer unbearably as we die. Passing this Act will give dying Kiwis a choice. It will allow us to choose to end suffering that is unbearable for us in the final stages of life and to die peacefully,” says Dr Smales.

“Data from Australia tells us that even with good hospice/palliative care 2-5 per cent of us endure unbearable suffering as we die. That’s about 250 people out of 33,000 deaths each year. This number is small but the suffering is not.

“Just knowing there is a choice is powerful palliation and a huge relief.”

Yes for Compassion is backed by expertise that spans medical, legal, political, Māori and religious perspectives. It is also supported by prominent New Zealanders including Sir Michael Cullen, David Seymour MP, Sir Geoffery Palmer, Dame Margaret Sparrow, Dame Iritana Tāwhiwhirangi, Prof Andrew Geddis and Michele A’Court.

More information about Yes for Compassion, along with factual information on the End of Life Choice Act can be found here.

Ends.

Media contact: Jo de Joux – 021 245 6924

People like to say that you should judge a country by how it treats its most vulnerable member. I want to live in a country where the answer to that question is ‘compassionately.’ One of the most vulnerable groups of people are those who get ill and suffer badly at the end of their life.

This takes nothing away from palliative care. It has made amazing advances, particularly in the past two decades. But, some people still suffer and deserve more choice. In countries where Assisted Dying is legal, it is not seen as competing with palliative care but complimentary to it.

The simple question is whether our society says to those people ‘you must suffer on, the laws demand it,’ or do we say ‘It is your life. How and when you go is therefore your choice.’ I know which New Zealand I want to live in.

Some say the choice is impossible, that choice for some means compulsion for others. I have participated in this debate, literally from Kerikeri to Gore, for the last five years. After listening to every conceivable argument, it’s become clear the choice is possible. The Supreme Court of Canada, our own Attorney General, and decades of data from overseas show a law like this can give choice to those who want it, while leaving those who do not want it well alone.

I used my Parliamentary privilege to campaign for this bill over four years in Wellington. It experienced one of the most intensive parliamentary processes of any bill in living memory. Now, the choice is with you. Please vote for those terminally ill New Zealanders who suffer, so they can make their own choice about their own life.

Dear Lecretia,

 

Today marks the fifth anniversary of the day you were taken from me, and the day that you received the ruling that you would not have a choice about how you would die. So much has happened since then that you do not know about, and that I wish you had been able to see. You will never know how much of a difference you made. And you’ll never know how much I’ve missed you.

 

I got married again, like you hoped I would. It was difficult for a while, opening up to someone else after losing you. But I did find someone and she is extraordinary. You would like her. We have a daughter now, too. It hurts to know how much you wanted to have a child with me, but I think you’d still be happy for me now, if you could see me. I hope you would be proud of the man I’ve become.

 

I moved to New York. You told me how much you loved it here. We never visited together, but when I arrived I’d often see something or experience something and wish you could be there to share it with me. I went to a restaurant by myself, on our wedding anniversary, and tried to imagine you there with me. It’s a blessing that photographs don’t fade any more, but I’m afraid that memories still do. I can see you in my mind’s eye, but trying to conjure your essence has become harder and harder. I can’t pretend to hear you reply to me any more. I’m losing my hold on you.

 

But perhaps that’s as it should be. You taught me that life is for living, and now that you are gone, I can do you the most honour by living a full life. It is getting less painful to do that as your memory fades, but I will never truly forget you, and our time on this earth together will always be a part of who I am.

 

You’d be amazed at what has happened in the last five years. You talked about your court case starting a conversation and getting people thinking. You did all that and more. You’re not going to believe it, but David Seymour, the ACT MP, took up your cause, and proposed legislation to enact the choice you wanted.

 

I know what you’re thinking. A minor party MP – what chance would he have? Well, he actually did it. I couldn’t believe it either. He worked with me and a few of your friends and supporters and a cross-party team of MPs and together we got it passed. Your story inspired people of all political persuasions.

 

Ultimately you showed people that it just made sense that a rational person should not have to suffer in the last stages of their terminal illness, and that giving someone control over how they would die is an act of compassion and kindness.

 

Other people were inspired by your story and came forward too. All of them, together, got us to the point we are at today. There were so many other stories, each heartbreaking and tragic in their  own way, each yearning for the peace of mind that the End of LIfe Choice Act would provide.

 

I am so proud of what you inspired in others.

 

The law that finally passed is simple and very strict. In order to receive assistance, a person must be over 18, have a terminal illness likely to end their life in 6 months, in an advanced state of irreversible decline, experiencing suffering unbearable to them, and must be competent enough to know what they’re asking for and to be able to make an informed decision. At least two doctors must agree the person is eligible and free of coercion.

 

Learning about these laws took me all over the world. I went to Switzerland, Australia, the Netherlands, the United States, Canada, and Colombia. I can assure you that this is one of the strictest laws of its type on the planet. You’d be very proud of it.

 

It won’t be easy for people to access assisted dying, but I think you’d agree it doesn’t need to be easy. In order to give people hope in a hopeless situation, it just needs to be possible.

 

There is one final step though. The law will only be implemented if it passes a referendum at this year’s general election.

 

I have faith that the people of the country you lived in and loved will pass the law and vote yes for the End of Life Choice Act. I can think of no more fitting end to this story than one where the choice you fought so hard for is made available to those New Zealanders who need it. That your choice becomes a choice for everyone at the ballot box. And that those people vote yes, and that terminally ill people have a right of autonomy and agency given to them, so that they can have a say about how they die. It’s embarrassing that some Australian states have now achieved this right before we have. But we now have a chance to catch up.

 

One day soon, after this election, I hope to visit your grave, and to kneel there and to tell you all of this in person, and that you did it.. That you helped change the world for the better and that you’ll never be forgotten. I want that for you so badly, Lecretia. You were pure of heart and kind and selfless and one of a kind, and you deserve to be remembered.

 

It has been a long journey, and in my heart I know I need to let you rest. Five years is a long time to keep flying your banner. I hope that with a successful result in September, I can finally lay that banner down. And then I can move further down the path you wanted for me: move on, live my life, be happy, and place all of my love here amongst those living. Never forget you, but learn to live without you. And let you take your place among the heavens.

 

I promised to fight your cause for you when you couldn’t, and I hope you’d agree that I’ve kept that promise. And now, I promise to let you go when this is all over, and we have this law in place in New Zealand. I hope that with the help of all New Zealanders, come September, I can keep that promise to you, too.

 

Love,
Matt