A matter of life and death
The euthanasia debate reveals deep divisions about the value and meaning of life, writes Philip Matthews.
Raymond Mok does not want to die. He did once, but not any more. Mok was diagnosed with Duchenne muscular dystrophy at the age of 7. He had a fairly normal childhood – he could walk and did most things others kids did, although climbing stairs took him longer. But the condition is progressive and now, he says by phone from Auckland, ‘‘my mobility is limited, in that I have partial use of my hands and can use my back, but I still enjoy my life doing what I can do’’.
At 31, Mok has already exceeded the life expectancy of many Duchenne sufferers who, according to the US National Library of Medicine, often die before the age of 25, typically from lung disorders.
But those numbers don’t mean much to him.
‘‘Life expectancy is just an historical average, so I don’t let it confine my decisions. This year, I’m embarking on a counselling degree. I want to help others be happy.’’
He does not feel that his life is worth less than that of another, more able-bodied person. He reveals that he tried to kill himself 10 years ago and that is something he regrets; other people, including a number of people with disabilities, were his inspiration to keep going.
He is candid about all this because it relates to the current debate around euthanasia. In December, the End of Life Choice Bill passed its first reading in Parliament with 76 out of 120 MPs voting to send it up to the justice select committee on the slow process to its becoming law.
Despite the deep nature of questions it raises about the meaning and quality of life, the Parliamentary debate was unusually polite and respectful. There was, as former MP and proeuthanasia campaigner Maryan Street notes, a pleasant absence of grandstanding, time-wasting or personal abuse.
The details may change but the bill at present would allow for a New Zealand citizen or resident over 18, who is suffering from a terminal illness that is expected to end their life within six months or has a grievous and untreatable medical condition, to opt for an assisted death. There are safeguards of informed consent and assessment by two doctors.
The pro-euthanasia camps argue that civilised countries like ours at this point in history should allow for death without suffering, a painless option. You hear a lot about the dignity of the dying.
‘‘In a modern and compassionate society, the law should allow for a decent death,’’ said Chris Bishop, one of the 21 National MPs to vote for the bill.
The strongest opposition in Parliament came from Simon O’Connor who said that ‘‘fundamentally, I do not believe doctors should be killing their patients’’. O’Connor was one of the 35 National MPs who voted against.
Nine Labour MPs voted against, including Pasifika MPs Jenny Salesa and Poto Williams, Ma¯ori MP Rino Tirikatene and Pa¯keha¯ MPs Phil Twyford and Damien O’Connor.
All NZ First MPs voted for it at this stage, but want to see a referendum on euthanasia. All of the Green MPs backed it. At a campaign meeting in Christchurch in August, Green MP Eugenie Sage talked of her support for assisted dying based on the dreadful personal experience of her paraplegic stepbrother who was helped to take his own life.
‘‘He went from being very independent to having to depend on people, even to be fed,’’ Sage told voters in Christchurch. She remembered his ‘‘distressing and enormously difficult’’ death being followed by a police inquiry into who assisted him. She, too, reiterated the need for a series of important safeguards, which the bill offers.
‘‘It is not pleasant to talk about painful death,’’ said ACT MP David Seymour, whose bill continued the unfinished business of Street’s earlier attempt to make assisted dying legal.
In this corner there is compassion and dignity, while opposition to euthanasia is often imagined as medieval and unenlightened, a product of redundant religious faith. But actually, Street says, the arguments are more complex and nuanced.
There is no monolithic block for or against. Her years as the unofficial godmother of the euthanasia movement in New Zealand – she is now president of the End of Life Choice Society – have shown her that there are some Catholics for, as well as many against. There are Ma¯ori for and against, Pasifika for and against, Asians for and against.
The polling Street cites was conducted by Horizon in May 2017 and found that 75 per cent of New Zealanders support or strongly support the right to die, with support at its highest among Pa¯keha¯ and other Europeans and lowest among Asians and Indians.
It is, Street knows, a deeply individual matter. Faith may play a part, or politics or, more likely, life experience. Street has talked about watching her sister die from motor neurone disease, which she called ‘‘a ghastly, ghastly illness’’. That was 12 years ago. Her sister may not have even wanted the euthanasia option had it been available but that experience helped shape Street’s personal views about suffering.
Street and others know that opposition is not just cultural or religious. She characterises it as threefold, with the other two parts being the views of palliative-care specialists who argue that we can offer greater relief to the dying without needing euthanasia in the toolkit, and the people with disabilities and those who represent them.
This is where Raymond Mok comes in. What does it mean to say that those with serious medical conditions can legally opt out of life with the help of the able-bodied? Does it imply that their lives are less precious, less valuable?
It smacks of discrimination to him.
‘‘I think it’s not the Government’s role to say who is eligible to live or die,’’ Mok says. ‘‘If it is the choice of the individual, then it shouldn’t be limited to people with severe illness or disability.’’
This does present a genuine dilemma that gets to the heart of our ethics. In our rush to offer a compassionate death to those who are suffering, we might also be suggesting that they are somehow worth less than others. As Mok says, the important thing is that a consenting adult is making an informed and conscious decision to die, regardless of illness or disability.
Street steps carefully into this ethical minefield and says that ‘‘when it comes to people with disabilities, this needs to be treated with the utmost respect, because their lives are typically a struggle, society views them differently already, and they feel that because they are already vulnerable, they will be more vulnerable’’.
She believes that two things underpin both the assisted-dying bill and disability charters, and they are maximum autonomy and dignity. Just as disability rights activists want to enshrine those qualities, so, too, does the proeuthanasia camp.
But yes, it is a highly tricky area that must be approached with as much sensitivity and empathy as we can muster.
As for the palliative-care backers, Street says that she, too, is a great supporter of it but ‘‘I only wish that in New Zealand it were universally accessible and it were universally of a high standard. Neither of those things is true’’.
The slippery slope argument is harder to combat, though. What happens if we keep normalising the right to die or keep expanding the parameters? How far does liberalism take us?
Australian ethicist Xavier Symons made this point recently when euthanasia was debated and made legal in the state of Victoria. In the Netherlands, Symons noted, euthanasia deaths have trebled since 2002, and are now more than 4 per cent of all deaths, with increasing requests from people who are not terminally ill but simply ‘‘tired of life’’.
There is something very sad about this trend: boredom, illness and loneliness in the most prosperous societies in history, where some would rather be dead and no longer a burden.
How about the right of children to die? That would seem grotesque to many of us. But the Netherlands allows assisted dying for those over 12 and Belgium has had no age limit since 2014. The first Belgian minor to be legally euthanised was a terminally ill 17-year-old in 2016.
Would we accept this in New Zealand? Street agrees it is not palatable and she has been adamant about safeguards that would restrict assisted dying to those old enough to vote and the need for citizenship or residency to stop New Zealand from becoming a death-tourism destination, as has been seen in Switzerland. There, in what seems like a gloomy sciencefiction scenario, the non-Swiss join locals in painlessly and swiftly ending their days at the Dignitas Clinic and other efficient, high-tech assisted dying facilities.
For Raymond Mok, the past 10 years have been a time of steady physical deterioration. And yet he won’t be supporting the assisteddying bill, and rejects the notion that any life is less worth living.
‘‘I don’t want to die because I have learnt more about the beauty of life.’’