A choice of life and death
As part of a series on the euthanasia referendum, Hannah Martin looks at where various sides stand on the debate.
The topic of assisted dying or voluntary euthanasia has long been debated in New Zealand, and is fraught with emotion on both sides.
Those opposed say assisted dying weakens society’s respect for the value and importance of human life and can lead to worse care for the terminally ill. Arguments in support of it say it is a person’s right to choose when and how they die, and euthanasia affords them the right to die with dignity.
On September 19, New Zealanders will get to vote on a piece of legislation which would allow eligible terminally ill adults the option to request medication that would end their life, through assisted dying.
Here we break down some of the main arguments posed by those on both sides of the End of Life Choice Act debate.
Assisted dying, or euthanasia, is defined in the act as a doctor or nurse practitioner giving a person medication to relieve their suffering by bringing on death, or the taking of medication by a person to relieve their suffering by bringing on death.
It is currently illegal in New Zealand, and is considered ‘‘aiding and abetting suicide’’ under Section 179 of the Crimes Act (1961).
Under the current law, those who commit the offence of assisting or encouraging someone to take their life can face time in prison – regardless of whether a suicide attempt is made or not.
To be eligible for assisted dying under the proposed act, a person must be suffering from a terminal illness that is likely to end their life within six months. They must have significant and ongoing decline in physical capability, and experience unbearable suffering that cannot be eased.
A person would not be eligible if the only reason is that they are suffering from a mental disorder or mental illness; have a disability of any kind; or are of advanced age.
It’s a polarising topic: more than 39,000 people made submissions on the End of Life Choice Bill before it was passed by MPs.
A recent University of Otago paper on 26 studies into New Zealanders’ euthanasia views over the past two decades found 68 per cent were in support, nearly 15 per cent in opposition and the remainder unsure.
‘Choice, control, compassion’
Many in support of assisted dying believe people should have the choice to die with dignity, on their own terms, without the threat of breaking the law.
Former hospice physician and palliative care specialist Dr Libby Smales says what the legislation really offers – and why the Yes for Compassion spokeswoman is in support of it – is choice.
Yes for Compassion believes terminally ill New Zealanders should have choice and control at the end of their lives, including the option of requesting life-ending medication.
The group was formed to ‘‘make sure the public is wellinformed about the legislation’’ ahead of the vote in September, and states that its collective expertise spans medical, legal, political, Ma¯ ori and religious perspectives.
They say the law would give people with terminal illness control of how, when and where they die; at home, with loved ones around them, ‘‘avoiding prolonged and painful deaths’’ – giving them back the control their illness has taken away.
They say choice is ‘‘really, really important’’ for those whose disease or life has become untenable and ‘‘want to dodge the rest of the horror’’, Smales says.
‘‘People forget the act and assisted dying is voluntary . . . for most people it won’t be necessary.
‘‘This legislation would make a real difference to people facing a terrible fate’’, allowing them dignity in death that they may otherwise be robbed of, Smales says.
The importance of choice is echoed by the End of Life Choice Society, an advocacy organisation seeking a law change to allow assisted dying.
President Mary Panko says choice is ‘‘absolutely fundamental’’ to the act, as the conversation about assisted dying should come down to what an individual patient wants.
If a person went to their GP or into hospital with a problem they may be presented with a range of options – whichever treatment or path they pursue is their choice.
‘‘We absolutely believe people in the last stages of their lives should have that choice too.’’
Panko says data in the United States show, on average, those accessing assisted dying typically shorten their lives by just 10 days – a reprieve, instead of ‘‘encouraging people to just hang on’’.
Under the status quo, many who are ‘‘desperately’’ ill are terminally sedated without any say in the matter – it is often the doctors’ choice or the family’s choice, Panko says.
Ninety-five per cent of the population will never need the act or be eligible, but passing it into law would allow the decision to be made by those few who do, she says.
‘‘Risk to the vulnerable’’
On the other hand, many of those opposed to assisted dying believe legalising euthanasia would place pressure on vulnerable people – those with disabilities, mental health issues and terminal illness – to access assisted dying for fear of being a financial, emotional or care burden on others.
Palliative care consultant Dr Sinead Donnelly is the deputy chair of Care Alliance, an umbrella group of organisations, including the major providers of palliative care, which believes the legalisation of euthanasia and assisted suicide is ‘‘unnecessary, unsafe and unwise’’.
They believe the act puts ‘‘vulnerable [people] at risk’’ of coercion – often ‘‘very subtle’’ and which doctors are not trained to detect, Donnelly says.
Under the act, two doctors are required to sign off the procedure, but they don’t need to have had any longstanding relationship with or prior knowledge of the person.
The group also opposes that a person could be eligible under the act without seeing a psychiatrist to assess whether they could simply benefit from mental health support instead, Donnelly says.
The act allows for a psychiatrist to be consulted if the
two doctors are not satisfied.
The group is concerned an older person who feels they are a burden on their family will turn to assisted dying as an option ‘‘not for the right reasons’’, and a doctor with little palliative care training or understanding ‘‘would feel the answer could be euthanasia’’.
Donnelly says the act has ‘‘so many holes in it . . . making it dangerous for vulnerable people’’. ‘‘Even if you philosophically support assisted dying, this act should not be the one [legislated].’’
Those opposed also say the bill is a ‘‘step into the unknown’’ for New Zealanders with disabilities.
Groups such as DefendNZ say the availability of assisted dying could leave those eligible feeling ‘‘they now have to justify . . . the expense of keeping them alive, and why they’re putting their family and caregivers through the burden of caring for them’’.
‘‘Currently, it is universally accepted that sick, disabled and elderly people are cared for until their natural death. The availability of assisted dying as a legal option would make staying alive optional, instead of the default position we have at the moment,’’ it says.
Smales, who directed a Napier hospice for 20 years, says even with excellent palliative care, some New Zealanders still suffer ‘‘unbearably’’ at the end of their life.
While New Zealand doesn’t have its own figures, Australian research found between 5 and 6 per cent of patients still suffer ‘‘terribly’’ in a way a medical team can’t alleviate, in spite of good palliative care. ‘‘People talk about this happening in small numbers, but if you’re one of them, they don’t appear small.’’
Suffering isn’t just pain, she says, it is entire bodily systems failing: your bowels, your breathing.
Relieving this suffering is another main argument those in support of assisted dying hold.
Smales says she has heard many moving stories about those who chose to have a ‘‘quiet, peaceful, planned death’’ versus those ‘‘lonely, violent deaths’’ of those who are suffering.
She says a difficult death can cast a long shadow – ‘‘it is terrible for the person dying and torture for their family’’.
‘‘This legislation will make a big difference to people who are facing a terrible fate.’’
However, relieving suffering by ending a person’s life is something many doctors – including those working in palliative care – say is at odds with why they are in the profession.
‘An erosion of trust’
Organisations such as Hospice New Zealand state that good palliative care is founded on a ‘‘trusting relationship’’ between a patient, their family, wha¯ nau and health professional. This relationship is ‘‘undermined’’ by euthanasia, they say.
This was echoed by close to 1600 New Zealand doctors who have signed their names to an open letter in opposition of assisted dying, titled Doctors Say No.
The group, led by Donnelly, states it is ‘‘committed to the concept of death with dignity and comfort, including the provision of effective pain relief and excellence in palliative care’’.
It argues proper palliative care makes euthanasia unnecessary, and says giving proper pain relief in palliative care, even if it may hasten the death of a terminally ill patient, is ethical and legal.
‘‘We believe that crossing the line to intentionally assist a person to die would fundamentally weaken the doctor-patient relationship, which is based on trust and respect,’’ the open letter states.
Doctors also expressed concern about the six-month period described in the act, saying prognosis is ‘‘informed guesswork’’ rather than an exact science.
University of Auckland professor and palliative care specialist Rod Macleod says he has cared for 15,000 patients in his more than 30-year career, none of whom ‘‘I’ve thought would be better off dead’’.
‘‘But I’ve had plenty who have asked.’’
Macleod, Hospice New Zealand’s clinical adviser, says the organisation – which represents all hospice services in the country – believes euthanasia has no place in palliative care.
Those who ask for euthanasia are often at the beginning of their palliative care journeys, and feel hopeless or afraid – fearing loss of dignity or being a burden. Once they get the support they need, those requests for ‘‘early death’’ fade away, he says.
Macleod is ‘‘never surprised’’ when people say they no longer ‘‘want to live like this’’, but says palliative care can change the way people live without the need to hasten death.
He says it is the role of society to protect the ‘‘most vulnerable’’, while assisted dying legislation would give them the ‘‘perception there are lives not worth living’’.
‘‘The availability of assisted dying ... would make staying alive optional ...’’
Ninety-five per cent of the population will never need the End of Life Choice Act or be eligible, but passing it into law would allow the decision to be made by those few who do, says End of Life Choice Society president Mary Panko. The act has ‘‘so many holes in it . . . making it dangerous for vulnerable people’’, says Dr Sinead Donnelly, a palliative medical specialist.
Once the terminally ill get the support they need, requests for an ‘‘early death’’ fade away, says Hospice NZ clinical adviser Professor Rod Macleod.
Former hospice physician Dr Libby Smales says the act ‘‘would make a real difference to people facing a terrible fate’’.