Fears Parliament will refuse to act over right to die
After the High Court's ruling that Parliament, and Parliament alone, may change the law of euthanasia in New Zealand, those facing traumatic deaths fear nothing will be done because conservative minority voices are resisting change.
John Titchener should live to see Christmas with his grandchildren. He would be very lucky to make it to the next one. He has an aggressive form of prostate cancer that will eventually kill him.
"Right now I am very tired but I don't have pain. But that will come," he says.
It is likely he will not have a bad death. But he is concerned that, like a small number of people with prostate cancer, he could suffer badly. And if he does, he would like the choice to end his own life.
"I would want to be able to say enough. I absolutely do not see any value, any benefit of any kind at all in suffering," he says.
A farmer for many years, he cannot understand why the legal treatment of animal deaths is so far ahead of the legal treatment of humans in New Zealand.
"If you allow an animal to suffer you were committing a crime. And yet a human being who is mentally competent and knows what they want, is unable to say: 'put me out of my misery'," he says.
This week, the High Court ruled against lawyer Lecretia Seale's request for the right to an assisted death. She died from brain cancer hours after she received the judgment.
The decision by Justice Collins to place the responsibility for any law change on Parliament means Titchener is unlikely to have any choice in the way he dies, suffering or not. For 20 years, Parliament has refused to take action on what is a largely popular cause.
A Research New Zealand poll of 501 people, released in April, found 74 per cent agreed doctors should legally be able to euthanise terminally ill patients, if that patient has a painful incurable disease and requests their life to be ended. Twenty percent did not agree with this stance and six percent were unsure. But a small minority has maintained a strong opposing voice that has kept the issue off the legislative agenda since 2003.
Loudly opposed to euthanasia is the Care Alliance, representing groups including Christian Medical Fellowship, Euthanasia-Free NZ, Family First, Palliative Care Nurses and the Salvation Army. They believe euthanasia is dangerous and unnecessary.
"People who have different views to mine say I have to suffer because of their beliefs," says Titchener.
He hopes that despite the decision, the Seales case will lead to more debate. But Parliament has been very reluctant to address euthanasia.
Lecretia Seales, seen with her husband Matt Vickers in 2009.
In 1995 the "Death with Dignity" Bill was defeated by 61 votes to 29. It was resurrected in 2003 and defeated 60-58. Labour MP Maryan Street's euthanasia private members bill was never drawn from the ballot before she removed it in 2013 to avoid political difficulty as the election approached. Colleague Iain Lees-Galloway picked up the bill but was later told to drop it by Labour leader Andrew Little. While supporting the right to an assisted death, Prime Minister John Key has said he firmly doubts whether a euthanasia bill would make it through parliament.
"It requires a bit of intestinal fortitude that is lacking right now. There are times when parliament should lead, and times when parliament should follow. Here they are doing neither," says Street, now outside Parliament, who wants to see euthanasia adopted as a cross party issue.
* Death of Lecretia Seales may inspire Parliament to take up issue of voluntary euthanasia
* California Senate approves physician-assisted suicide bill
* Lecretia Seales lived with passion, determination and autonomy
* Geoffrey Palmer's tribute to Lecretia Seales
Andrew Geddis, a constitutional law expert at Otago University, believes a decision that recognised Seales' right to assisted death would have lit a fire under parliament forcing it to legislate more generally on the issue. Doctors are currently exempt in certain circumstance for responsibility for the death of their patients under medical law, and he suspects the position is now unlikely to get any clearer.
"Parliament is ducking it," Geddis says. "If we really in New Zealand believe that doctors shouldn't be doing this we need to pass a clear legislative provision to say doctors cannot do this. Parliament would never do that, because 75 per cent of the population thinks they should be able to."
After Tui McBeath stopped accepting nutrition and hydration, it took her nine days to die. She was diagnosed with motor neurone disease in December 2013. She quickly lost the ability to paint - her passion. She was soon no longer able to work, or drive. For seven months before her death she was fed through a tube. She mourned the loss of every one these things that made her human, and who she was.
When she was no longer able to walk and became almost completely reliant on full time help to live, this was when she knew she was no longer happy with her quality of life. So she chose to die.
"We all really understood that right from her diagnosis that she never intended to see the disease right to the end. She always said she would know when the right time was and she would make that choice," said her daughter, Annabel McAleer.
But trying to figure out how to end her suffering before she got to that point weighed heavily on McBeath.
"She spent a long time thinking about the end and worrying about how she was going to die," said McAleer.
Many of the methods she researched would have required her to be in a state where her life was still worth living. Her last choice, her legal right to refuse the medical intervention required to feed her, was all she felt was left. A strong advocate for euthanasia, she wished there was another way.
"I wish there was an injection. I would rather have a quick death than one that takes weeks, with weakness, sleepiness, possible coma, having to be catheterized and probably have enemas. It's a huge unknown. I don't need that on my mind as well as everything else I'm dealing with," McBeath told her daughter as she approached death.
Now, it appears others in her situation will not have a choice either, or the relief the option to die brings
EUTHANASIA AROUND THE WORLD
Canada: In February the Supreme Court of Canada ruled 9-0 that someone suffering intolerably and permanently has the right to an assisted death.
The court suspended its judgement for 12 months to allow for parliament to make laws to reflect the decision.
Luxembourg: In 2009 Luxembourg legalised euthanasia. Terminally ill patients are given the choice to end their life after receiving the consent of two doctors and a panel of experts.
Netherlands: In 2002 the Netherlands became the first country to legalise euthanasia(in special circumstance where a person is experiencing unbearable suffering, with no prospect of improvement, and sees it as the only option).
In 2010, 3,136 people were reported as receiving an assisted death in the Netherlands.
Switzerland: Assisted suicide is permitted if the motives are "not selfish." Foreigners may seek assisted death in Switzerland; organisations such as Dignitas offer that services for a fee.
United States: Euthanasia is legal in five US states. Oregon was the first to legalise assisted death in 1997.
South Africa: In April a South African man, Robin Stransham-Ford, died naturally on the day a landmark decision by the Pretoria High Court granting him the right to an assisted death.
Belgium: In 2002 Belgium became the second country to legalise euthanasia, and now has the world's most liberal law on assisted death. The legislation provides not just for the terminally ill but also mentally ill patients and children.
DIARY OF THE FINAL WEEKS
Undergoing rigorous chemotherapy and watching a documentary on the late Terry Pratchett, Lecretia Seales sent a message to friends late last year.
"I may become active in this area."
She was referring to Pratchett's search for death with dignity which he advanced following his diagnosis with Alzheimers.
By that time, Seales had already sought the services of Andrew Butler at Russell McVeagh, kickstarting her case for her right to an assisted death after being diagnosed with brain cancer in 2011.
"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," her husband Matt Vickers wrote in a lengthy tribute on his blog, Lecretia.org.
"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."
Surrounded by supporters on Saturday, Vickers told the Sunday Star-Times everything he wanted to say about his late wife's fight was encapsulated in his blog posts and asked the paper to include as much of it as possible in print.
May 20: "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."
May 24: "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."
May 31: "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."
June 5: "Lecretia listened to me as I explained the decision. Even though she couldn't'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."
June 5: "Lecretia passed away this morning at 12:35am from natural causes. I am unable to express my feelings right now."
June 5: "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."