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Source: Aged Care Insite
Traumatised families and nurses have swamped an inquiry with accounts of harrowing deaths in a bid to convince Queensland to introduce voluntary assisted dying laws.
More than 170 submissions have so far been lodged as the state government attempts to gauge the level of public support for euthanasia.
Early results indicate a groundswell of support for change, with about 140 of the submissions urging a shift to medically-assisted dying with the right safeguards in place.
Just 40 submissions have argued against any reforms, variously describing right-to-die laws as dangerous, state-sanctioned murder and a grave violation of God’s law.
One of the most powerful submissions for change was written by Carol Cronk, who is planning to go to Switzerland to end her life and avoid the kind of deaths her parents experienced in high-dependency dementia wards.
She describes her 93-year-old mother’s death, after she suffered “unfixable” broken shoulders and ribs during a nursing home fall before she was sent to her final “death ward”.
“[She] was forced to live in this death ward in 24hr pain and intense shame, toilet issues, all in her nappy, fed like a baby and machine hoisted, naked, by strangers into a shower. Her everyday screams were for God to take her,” Cronk wrote.
“Personal experiences change our beliefs systems. I have a terminal illness, and have already contacted Dignitas Switzerland re my need to be forced into going over there, to be spared.”
Another supporter, Linda Roberts, has told the government inquiry that she almost gave in when her ailing mother begged for help to die.
Living with cancer and in terrible pain, her mum pleaded for extra doses of heavy-duty pain medication, after telling her family she’d “had enough” and urging them: ‘Please help me’.
“I was shocked that she asked this of me and it took me a period to digest what she asked me to do,” Roberts wrote.
She reached the point where she was seriously considering doing what her mother had asked.
“The only thing that prevented me from granting my mother’s wish was that I had to consider my own two children and the consequences of my actions had I gone through with this.”
One week later, her mother’s pain was no longer manageable at home, and she was put into a palliative care facility. There, Roberts said, doctors approved massive doses to her pain medication and hastened her death.
Former police officer Laurie Paul told the inquiry of attending countless suicides in his long career, but one in Townsville has stayed with him.
“We were directed to the back yard shed. There lay an elderly gentleman who had suicided – his elderly wife and family grieved for him upstairs,” he wrote.
“He had recently been advised that he had cancer and in his loving note to his wife of many years, outlined that he was of the view that he did not wish for her to suffer as he slowly died in front of her, and that she would have to nurse him in the last years of their lives.
“This was wrong and a sad indictment on our society.”
The government inquiry is broader than assisted dying. It’s also delving into the adequacy of aged care, and end-of-life and palliative care.
A large number of submissions supporting assisted dying have been lodged by nurses who work in palliative care, and say the idea that drugs can always manage pain and deal with suffering is nonsense.
“Sometimes there is never a high enough dose of medication to ease the pain,” retired nurse Jill Glover wrote.
Verena Sidler said she’d witnessed countless horrible deaths in her 30 years as a registered nurse.
“I can recall numerous patients with terminal illnesses who spent their valuable energy literally begging myself and other nurses ‘to be put out of their misery, indignation and pain’… until dying.”
When her own father was diagnosed with pancreatic cancer, she was grateful he lived in Switzerland and used that country’s laws to end his life peacefully in his own home.
“Two weeks prior to my father’s death, I asked him what had helped him most to improve his quality of life since being diagnosed with this terminal illness and he answered, the knowledge that he did not have to die a terrible death without having any control.
“I entreat you to consider voluntary assisted dying.”
Of the 40 submissions arguing against change, many said better palliative care options would negate the need for assisted dying laws.
“What the terminally ill who are in pain want and need is proper care and pain relief, not an end to life. Theirs is a cry for help that better and proper palliative care can certainly deliver on,” Karen Mitchell wrote.
Anne Coyle warned voluntary euthanasia would lead to murder.
“It is impossible to control euthanasia once it has been legalised. All countries who have legal euthanasia have records of patients being euthanised against their will,” she said, without citing any specific examples.
Other opponents said God gave life and only he could take it away, a view shared by Donald and Glenice Larsen, who both lost their previous spouses to cancer.
“[They] were afforded the best possible palliative/end-of-life care, in as much as pain control and being made comfortable… As Christians we believe what God has told us in His Word – He is the giver of Life and we have no authority to take it away.”
Public submissions to the inquiry close on April 15.
Media release From the End-of-Life Choice Society 2 April 2019
MP Maggie Barry has resorted to lying in her campaign to prevent a law change that would allow terminally ill patients to die peacefully in dignity with medical assistance, the End-of-Life Choice Society said on Tuesday.
Barry, who is on Parliament’s Justice Select Committee considering the change, told TVNZ’s Q&A programme Monday night that people in Canada with “dementia, anorexia and arthritis” were being euthanased. She also claimed that children were being euthanased without their parents’ knowledge or consent.
None of that is true, EOLC vice-president Mary Panko, of Auckland, said Tuesday. To qualify for medical assistance in dying (MAID) under Canada’s law, people must be 18 years of age or older and have a grievous and irremediable condition.
They must have made a voluntary request, not under any external pressure, be evaluated by two independent doctors and give informed consent to MAID after being informed of means to relieve their suffering, including palliative care.
They must have a serious and incurable illness, disease or disability, be in an advanced state of irreversible decline, endure physical and psychological suffering that is intolerable and their natural death has become reasonably foreseeable. They must be mentally competent of providing informed consent at the time they receive MAID.
Ms Panko said: “It does not serve democracy when an MP deliberately seeks to foil a law change that 70% of voters want - despite a vigorous misinformation campaign based on blind dogma - with tactics designed to frighten the uninformed.
“She slurred the medical profession by asserting that some doctors would ignore the extensive safeguards in David Seymour’s Bill, accused the disabled of not being able to make their own decisions and claimed that a large segment of the population would want their parents or grandparents dead.
“Her tactics, seeking to stop New Zealanders getting an enlightened law of choice that nearly 200 million around the globe now have, are dishonest and dishonourable for someone who claims the title Honourable.”
Mary Panko – firstname.lastname@example.org Tel: 027-419-7802
Released by David Barber, EOLC media adviser 021-072-8760
How interesting that Michael Vanderpump (Letters, April 8) should mention "common sense and the truth" when opposing the End of Life Choice Bill.
These qualities have been singularly missing in the dogma-based opposition to the measure. It is common sense that people should not have to suffer in their dying days - and there is ample evidence that currently some do.
And the Honourable Maggie Barry has repeatedly dishonourably and dishonestly told lies in her rabid opposition to a law change that a clear majority of New Zealand voters want.
Esther Richards wants more choice as she nears the end of her life.
Esther Richards is in a race with political and public sentiment.
If she loses the race, it could cost her a few precious weeks of life, and perhaps lead to a very unpleasant end.
After two years of remission, Esther has just learned her brain tumors have returned.
“I am not afraid of dying, because I believe in God,” she says. “But I am very afraid of the way I will die.” An oncologist told her it won’t be nice, and it won’t be peaceful. That prognosis is adding heat to Esther’s support for the End of Life Choice Bill.
“The cancer won’t kill me, and the brain tumors won’t kill me. What it does is shut down my organs one at a time.” She says she will end up bed-ridden, her muscles atrophied, wearing a nappy and fed through tubes.
Unfortunately, her first bout of cancer four-and-a-half years ago meant that painkillers that would ordinarily work for anyone else would not work on her. She is in the six per cent of patients for whom the drugs don’t work.
“I would be in serous pain throughout the ordeal,” she says. “It might take the top off the pain, but would not relieve me of the pain.”
In the end, she says, it would come down to palliative care – something called terminal sedation. “They put you into a coma and remove all of your feeding tubes so you die.”
Esther, however, won’t wait for that. “I will become a suicide statistic,” she says, “because I don’t intend to live long enough to suffer the hideous end they have prescribed me. I will take my own life.”
One of Esther’s problems is the time frames involved. She doesn’t know how long she has, and she is banking on a swift passage into law for ACT leader David Seymour’s End of life Choice Bill. She has long championed the right of the terminally ill to have control over their end.
“I need something to focus on while I wait for my death to come,” she says.
Esther has a best-case scenario worked out. The Justice Select Committee, which received 35,000 submissions on the bill, reports back to parliament early next month and gets a positive hearing at its second reading, sparking a referendum alongside next year’s general election and a third reading in 2021.
“Then, if approved, it would be a year to 18 months before the processes are put in place so doctors can start work,” she explains.
With a typical booming laugh, Esther says the End of Life Choice Bill might just help if her cancer takes a long time to kill her. “Yes, I could still be here in time to use the legislation. And apart from that, I want this matter sorted so others don’t have to suffer.”
Esther ticks all of the boxes and all of the criteria under the proposed legislation. She’s a New Zealand citizen over 18 suffering a terminal illness likely to end her life within six months. More generally, she has a grievous and irremediable medical condition undergoing an advanced state of irreversible decline and she understands the nature of assisted dying and the consequences.
With boxes ticked, the doctor has to determine, amongst other things, that the patient isn’t being pressured, and then encourage them to talk it through with family, friends or others. A second doctor will be asked for an opinion and a third if necessary.
It’s a complex process for a difficult and complex issue. The criteria is strict to avoid recklessness, disadvantage to the vulnerable or abuse. But in the end, as the preamble to the bill suggests, it allows people who so choose, and are eligible under the bill, to end their lives in peace and with dignity, surrounded by loved ones.
“I have had control over the rest of my life,” says Esther, “so why can’t I have control over the end of my life?”
She doesn’t spend all day thinking about her condition - she’s focused on fighting for this bill. “I have my own Facebook page, I have made contacts all around the world and we encourage each other.”
She is not a person willing herself to die. “I want to live,” she says. “I get enjoyment out of every day and I have friends and family who love me.”
Without the End of Life Choice Bill, Esther Richards will make sure she is in a position to control the end of her life.
“I will probably die a couple of months before I needed to,” she says. “If the legislation was in place, I would leave it to the last couple of weeks.” And it will be as peaceful as she can make it.
“Because I believe in God, I know I will have peace in the end.”
by Matt Vickers
After being diagnosed with a brain tumour, lawyer Lecretia Seales took a case to the High Court challenging for her right to die with the assistance of her GP. Photo/Listener/Hagen Hopkins.
As Parliament’s Justice Select Committee prepares to report back on David Seymour’s controversial End of Life Choice Bill, Matt Vickers – the widower of assisted dying advocate Lecretia Seales – makes his case for death with dignity.
Most of us take few one-way journeys in our lives. No matter how far we venture from home, whether for a day, a week, a month or for years, we usually return. Leaving home for good is generally paired with a major life event: university, a new job, marriage. A new start in a new place.
But not every one-way journey is about starting a new life. Every year, around 200 people make a journey to end one. They travel from their homes in Britain, Australia and New Zealand, to go to Zurich, Switzerland to die.
An appointment in Zurich does not have the same connotations as the fabled meeting with “Death” in Samarra. It’s a beautiful, scrupulously clean city stocked with watchmakers, wine bars and chocolatiers. In September, its narrow cobbled streets smell faintly of candy-floss. Bankers and tourists sit outdoors at the restaurants and bars lining the Limmat River, their minds more inclined toward skiing than mortality.
It’s here that Dignitas does its work, giving people suffering from dreadful illnesses or terminal prognoses a way to cut their lives short. Switzerland is not the only country in the world to offer assisted dying, but if you want assisted dying and you don’t live in a country that offers it, Switzerland is the only country in the world willing to help a foreign citizen like you.
Silvan Luley, a tall, grey-haired Swiss board member of Dignitas, is not happy about that. “It’s an atrocity that someone from Australia, New Zealand, the UK or anywhere on this planet has to travel to Switzerland if the only thing that he or she wants is to have a peaceful end to their suffering in life. How can a state treat people, who pay taxes all their lives, this way; to say, ‘If you want to end your life self-determinedly, I don’t care, go to Switzerland.’
“We shouldn’t be here. Dignitas shouldn’t exist. And this is actually our goal: to disappear. This is what we have been working for, for 18 years. Because when other countries allow sensible choices for their people, then they don’t need to travel here. And if we have implemented that around the world, then we can close down.”
New Zealand’s latest debate on assisted dying was partly initiated by my late wife, Lecretia Seales, who sought to have the right to be assisted to die if she chose to. She wanted to be able to access services such as those offered by Dignitas, but not to have to leave her country to get them. Like almost everyone, she wanted to be close to her home and her family when she died. But she also wanted control over how and when it happened.
My wife died in 2015 without winning that choice, but New Zealanders may end up with more options about how they die very soon. The End of Life Choice Bill, a members’ bill sponsored by Act MP David Seymour, which aims to offer assisted dying, is due to come back to parliament for a second reading sometime in the next few months.
Luley has no doubts about the importance of having assisted dying as an option. “It’s not about doing it or not doing it. It’s a choice. There’s an emergency exit door if the worst comes to the worst. I don’t need to go through that door, but it’s good that it’s there.”
The Dignitas office is about 30 minutes from the centre of Zurich by train, in a nondescript building with no signs on the door. Inside is a quietly efficient workplace with around 10 staff. In one room, there are four floor-to-ceiling file carousels, each filled with coloured folders. Each colour means something different: a blue folder means a case is under assessment; red, a person is no longer a member of Dignitas; yellow, a case has been approved but the individual has not yet chosen to come to Zurich (and may never come; approval provides the option to travel to Zurich, but not the obligation); and green, an individual completed the vetting process and was assisted to die at his or her home, or at one of the homes provided by Dignitas.
Swiss citizens strongly support the existence of Dignitas and organisations like it: in 2011, two religiously motivated political parties initiated two referendums, one to prohibit assisted dying and the other to end what they called “suicide tourism”. But 85% of Zurich citizens voted to keep assisted dying legal, and 78% voted to continue to allow foreign nationals to access it.
I ask Luley what the people who come to Switzerland are like. “Very autonomous, self-determined people,” he says. “In fact, that’s what most people write in their requests. ‘Look, I’m now 80, I’ve survived the war, I survived the Depression times after the war, I’ve worked all my life and I’ve done what a man needs to do and I’ve brought up my family and so on. It’s my life, it’s my choice... I’m going to [keep deciding] until the very last moment, and it’s my decision to end my suffering when I want.’”
This is consistent with findings in Oregon, the first US state to legalise assisted dying, in 1997. Studies have shown applicants tend to be disproportionately well-educated, wealthy and white: the very opposite of what society and critics would consider vulnerable.
Does Luley worry about coercion, or that a person’s motivations may be inauthentic? “I’ve never seen that. Maybe it has to do with the procedure and how the system works, especially with people coming from abroad. They go through at least a three- to four-month preparation procedure, and repeatedly have to show they want to go this way and that no one is pushing them. Apply for membership, fill out the advanced directive, write the formal request, write the life report, the CV, gather the medical reports, proof of identity and documentation and send it all to us. It’s a lot of paperwork they have to do, and they have to take the initiative themselves again and again.
“People who have thought about their situation and consider the options and then decide rationally to end their life… it takes a lot of courage. I don’t know whether I would be able to do that. I think we humans are just like animals, we cling on to life because that’s all we have in this world. Our brain stem tells us to live and to prosper and to have kids and to live on and longer. Deciding against that very basic driving force within us, and to say ‘No, with my intellect, I decide to overrule that, and end everything’ – that’s very brave.”
Read more: Why is altruism left out of the euthanasia debate? | Euthanasia: Exposing the tactics used by the Catholic Church
The Swiss assisted-dying clinic Dignitas, in Pfaeffikon, near Zurich. In Switzerland, providing the means for a person to take their own life is legal if done from non-selfish motives.
In New Zealand, the Swiss example – where doctors may only “assist” by providing the means to die – is rarely mentioned. Opponents focus on what they perceive as the broad remit of the Dutch and Belgian regimes, or the unsupervised example of the Oregonian model.
“In Switzerland, the assisted dying system has been working almost perfectly fine for 35 years, supported by physicians and with the assistance of non-profits like Dignitas,” says Luley. “We are not a good example for opponents, because... they would have to admit the most progressive-liberal system works fine, without abuse, without people being pushed to commit suicide. Without so-called vulnerable groups being under threat, without the value of life being eroded.”
In Oregon, a patient must be terminally ill with a prognosis of less than six months to live, but once that criterion is met and the doctors satisfied through a series of consultations that the patient is acting rationally, they are prescribed a medication they take home with them, and that they are free to take any time. However, they must take it without assistance.
In the Netherlands, a patient must have grievous suffering and be able to satisfy doctors they genuinely wish to be assisted to die. However, the drug is administered by a doctor under medical supervision; they are not permitted to take the drug themselves. In Belgium, doctors can help patients to end their lives when they freely express a wish to die because they are suffering intractable and unbearable pain.
Seymour’s bill, with the support of parliament, may settle on criteria similar to Oregon’s, but with a more Dutch- or Swiss-style system of supervision. This greatly restricts the ability for people to get assistance to die, but it also ensures that complications with taking the life-ending drug – a criticism of the unsupervised Oregonian system – are minimised, as a professional is on hand to ensure it is administered correctly.
For me, a terminal illness is what clearly distinguishes an assisted death from suicide. When death is imminent and inevitable and there is no choice to live, dying without suffering is inarguably humane. In New Zealand, where suicide statistics are a national tragedy, being able to make a clear distinction between assisted dying and suicide is important.
Opponents argue that six months is very subjective, and a patient could live for many months more. And that’s true. But six months simply gate-keeps the long, administrative process of winning access to assistance – it is not the timeframe in which the drug must be taken. The data suggests patients who do end their lives early do so by an average of fewer than 10 days.
But Dignitas does not think a six-month prognosis is a good place to draw a line. In this, it agrees with groups such as New Zealand’s End of Life Choice Society (until recently the Voluntary Euthanasia Society), run by former Labour MP Maryan Street. “Discrimination is not the way to go, and a six-month terminally ill model is definitely discrimination against people with long-term ailments who suffer badly but are not expected to die in a few months,” says Luley.
However, he acknowledges the line has to be drawn somewhere. “There is probably always a certain category of people who really suffer, but how do you want to make it objective? One thing is for sure: people wish for real freedom of choice in end-of-life issues. A restrictive law, such as in Oregon, does not live up to what all supporters want. It leaves many suffering people in despair, having to take to drastic measures, such as a lonely, risky suicide attempt, with dire effects on themselves, their loved ones and society in general. Or they travel to Dignitas, if they still can.”
Luley and I emphatically agree on one point: “Giving access to assisted dying is, in fact, suicide prevention and suicide-attempt prevention.” In Seales v Attorney General, this was upheld by Justice David Collins, based on 100 years of evidence from New Zealand’s coronial records. About 5-8% of all suicides here are people attempting to escape the worst of their medical conditions, killing themselves in awful, lonely and often violent ways.
These people might live longer if they could talk freely to their doctor about assisted dying, whether they go through with it or not. Under the current law, a huge part of the problem is people not talking to medical professionals about a wish to end their life early.
The writer, Matt Vickers, holds a photograph of his late wife Lecretia Seales while making a submission to the Justice select committee considering the End of Life Choice Bill in August 2018. Photo/Mark Mitchell/NewspixNZ.
Dr Juan Mendoza-Vega was the president of Fundación Pro Derecho a Morir Dignamente (DMD), a Colombian right-to-die organisation, and until 2015 the only substantial organisation of its type in Latin America. Sadly, Mendoza-Vega died in 2017 of natural causes, but I had the opportunity to meet him in Bogotá before he passed. There, he worked with his team to facilitate assisted dying for Colombians, supported by a constitutional ruling won two decades earlier.
Colombia is an anomaly in the short but growing list of countries that allow assisted dying. Generally such countries are Western, democratic and secular. Colombia is a Catholic-majority country (73% of its citizens are Catholic), surrounded by five other Catholic-majority countries. Its population is primarily made up of the soccer-playing sons and daughters of Spaniards, indigenous Americans, and Africans. In fact, the legality of assisted dying in Colombia is due only to a legal own goal.
Under the Colombian penal code (the equivalent of our Crimes Act), murder and assisted suicide are illegal. Unlike our Crimes Act, the code explicitly spells out that a murder or assisted suicide with a motivation of pity, to end intense suffering from bodily injury or disease, is also a serious crime. However, this category of crime – a crime of compassion – has a slightly lesser sentence.
A crusading young Bogotá lawyer, José Eurípides Parra Parra, believed that having lesser penalties for murder and assisted suicide based on motivation violated the right to equality in the Colombian constitution. He believed that no matter the motive of the criminal, a victim of murder or assisted suicide deserves equal justice, and thus an equal sentence for the offender.
However, his case had the opposite outcome to the one he intended. The Colombian Constitutional Court instead ruled that if a terminally ill patient had given authority to have their life ended, then a physician helping them could not be held criminally responsible. Not only did this contradict the penal code: as superior law, it overruled it. With one decision, the court legalised assisted dying for the entire country. Assisting a suicide was still illegal, but voluntary euthanasia performed by a physician on a willing patient was no longer a crime.
In 2014, Ovidio Gonzalez, a 79-year-old Colombian man suffering from throat cancer, sought to be assisted to die, but couldn’t find a physician who would help him. Most doctors believed it was still illegal despite the constitutional ruling. Gonzalez petitioned the court, and the court not only reaffirmed the patient’s right but instructed the Colombian Ministry of Health to provide norms and practices for assisted dying. Since then, assisted dying has been unambiguously legal.
Have the floodgates opened since then? Mendoza-Vega told me they hadn’t. In the most recent year he monitored, there were no more than six assisted deaths recorded in the whole country. “It’s not very frequent,” he said.
But for him, the number wasn’t important. He echoed Luley on the importance of choice. “Dignity in dying is really respecting the person who is dying until their last moment; respecting his or her will and decisions... If that person decides to suffer, that’s dying with dignity also. If this person says, ‘I want palliative care,’ that’s dignity in dying. We respect a person choosing euthanasia, and we respect all other forms of dying that he or she decides.”
Unlike the Dutch and Belgian models, the Colombian model has not had a great deal of public scrutiny in Western media. A patient who wishes to be assisted to die will contact DMD, which will aid the person, but with the same checks found in Western countries, including a review by two doctors and a psychological assessment. The person has to have a terminal diagnosis, with no corrective treatment available.
By working quietly, DMD aims to avoid scandal and protect the privacy of the family of the deceased. Colombia is prone to having the public details of any cases excoriated by an unsympathetic media, despite both doctors and the general public supporting the right of patients to access assisted dying. With his blessing, Gonzalez became a cause célèbre, but others are less inclined to go public with their plight. “Sensationalism is the worst for our work,” said Mendoza-Vega. “It tends to make what we do a spectacle and a circus. That’s the worst for objective discussions.”
I asked him for his views on the Dutch and Belgian models.
“I think in Belgium and the Netherlands they are acting according to their society’s beliefs and attitudes. Those attitudes are not the same as in the society of Colombia or in Latin America. So we must have our own ways and positions about this. We must have in mind the beliefs of our people and their attitudes.”
I often wonder what New Zealand’s attitudes are in relation to assisted dying. To me, assisted dying appears completely consistent with the stereotypical Kiwi values of rugged independence, tolerance, fairness, personal responsibility, and individual freedom and choice. In fact, those values are not too far from the ones listed in the manifestos of our two major political parties.
After spending time reviewing Seymour’s bill, I believe it is consistent with those values, while being a sensible Kiwi approach that learns from overseas experience. In particular, the proposed legislation doesn’t favour one method of assisted dying over another, leaving that entirely up to the individual, and what the doctor is willing to do. There are five permitted methods in Seymour’s bill: ingesting the medication oneself, orally, via a tube or intravenously; or a doctor supplying the medication via a tube or injection. By allowing all of these approaches, the legislation avoids hair-splitting about what is moral and what is not, and leaves it up to the patient and the doctor as to what their conscience will bear.
But no matter the method, the legislation is in keeping with New Zealand’s identity as caring and compassionate, by requiring an individual to be under medical supervision when any steps are taken to have their life ended.
Dr Anne Turner is helped by her son Edward from the Dignitas clinic in Forch, Switzerland. The retired British doctor had been diagnosed with progressive supranuclear palsy, a degenerative neurological disease for which there is no treatment. Her late husband, Jack, died of a similar condition, multiple systems atrophy, in 2002. Turner travelled to Switzerland from the UK, where assisted dying is illegal, and ended her life with medical assistance from Dignitas in March 2006. Photo/Getty.
Alongside the End of Life Choice Bill, New Zealand has been tightening its laws around assisted suicide. The Harmful Digital Communications Act was passed in 2015, amending parts of the Crimes Act to make inciting, counselling or procuring another person to commit suicide illegal, even if that person doesn’t end their life. The amendment doesn’t distinguish whether this is done electronically, as has been alleged in the case of MP Sarah Dowie’s text message to Jami-Lee Ross, or in person.
The conversation between doctor and patient around end-of-life choice is a tightrope. Under the previous law, a doctor coercing a patient into assisted dying would be unambiguously illegal. Now, under the amended act, a patient doesn’t even have to act on the suggestion for a doctor to be liable. Opponents fear that making assisted dying legal will have doctors pushing it on vulnerable patients, but it stands to reason that if a patient hasn’t asked, then it doesn’t fall under the End of Life Choice Act and may be a prosecutable crime under the Crimes Act, particularly if the suggestion is unwelcome and made persistently.
Even in a socially liberal country like the Netherlands, the conversation is a very careful one. Dr Rob Jonquiere is a former GP and current executive director of World Federation of Right to Die Societies. I met him in Amsterdam in a quiet cafe on the edge of the harbour. He has had these conversations with dying patients a few times.
“It is still, for most doctors, the most difficult request they can get, the patient asking the doctor for his help. Every doctor will immediately get in a kind of fighting stance and say, ‘Let’s see what we can do to make things more bearable.’”
I mention the arguments from some sectors of the disabled community: that doctors may unilaterally decide that a life is not worth living and may encourage someone suffering a severe disability to seek assisted dying. (Seymour has recently suggested amending his bill to state explicitly that disability is not a sufficient criterion on its own for assisted dying, although this was always implied.)
“I cannot imagine a decent Dutch doctor talking a disabled person into euthanasia. There is, of course, a possibility that in the communication between a doctor and a disabled person, which many times is a very close relationship, the doctor gets more and more the impression that actually the disabled person doesn’t accept his or her life anymore, and wants to do something about it but doesn’t want to talk about it. Then I can imagine that somewhere in that communication as a doctor, you carefully bring up the subject – not as a fact of ‘I’m going to do it’, but as a possibility they can think about.
“I would imagine that if you applied euthanasia to a patient who was disabled and reported it to the review committee, you would be immediately picked out and your case seriously scrutinised for possible referral to a prosecutor.”
Opponents have pointed to a lack of prosecutions in the Netherlands as suspicious: either the law is working perfectly with its system of oversight and review, and doctors are working within the law, or it isn’t, and doctors are quite literally getting away with murder.
But despite a lack of court hearings, cases have certainly been referred to prosecutors and health inspectors. Jonquiere estimates between 10 and 15 cases were referred every year for the past 10 years for violations of the carefully detailed procedure. However, despite the referrals, prosecutors have not elected to bring a case against the doctors named, usually because the infractions were bureaucratic oversights, not because something had gone drastically wrong.
Just last year, however, a doctor was prosecuted for not following the procedure outlined by the law – the first Dutch prosecution since assisted dying became legal in 2002. It’s alleged an elderly dementia patient had previously asked for assistance to die, but when the time came, was unable to clearly express her wish to the attending doctor. According to the claim, the doctor enlisted the help of the patient’s family to gently restrain the patient, in order for the life-ending medication to be administered. Dutch procedure states the patient must reaffirm their wish clearly at the time they are being assisted to die.
The case highlights the complexity of allowing advanced directives: a written document that specifies what you want from your end-of-life carers ahead of time. Do you respect the wishes of the previously competent individual, or the non-competent individual suffering from dementia, whose instinct to survive has set in?
“This is one of the big issues in the Netherlands... The first thing is we put in our law that an advanced directive is legally equal to an oral request when you are not able to put forward an oral request. Which means at the moment of euthanasia, you don’t need the patient to say, ‘I want euthanasia’ if there is this advanced directive saying, ‘I want euthanasia.’ You can say things have been completed in the proper way.
“[But] the doctor giving euthanasia wants to look his patient in the eye and say, ‘Is this really what you want, because if I push the needle, it’s over. No return.’ And the big issue is, if you have a demented person, is this what they want? What is the value of the answer?
“We introduced in the Netherlands the concept of five minutes to 12... As a doctor and patient, you have to talk regularly, and you have to find out actually the point where the dementia is far enough but not yet too far, so that you still can say, ‘I want euthanasia.’ And it is so far that the doctor can still clearly identify the situation as suffering, that is the moment, at five to 12, one to 12, just before 12. If you are after 12, it is too late.”
I tell Jonquiere that I think this is a very fine line, and it is part of the reason I don’t support advanced directives for euthanasia. Seymour’s bill doesn’t, either. For me, there can be no question of competency, no question that there is a real, genuine request.
“It is a balancing act,” he concedes.
Still, the recent prosecution supports the case that there is sufficient oversight. Jonquiere agrees: “Things happen which should not happen, but that happens everywhere. And I even dare to say they happen more often in countries that do not have a law.”
The evidence supports Jonquiere’s claim, especially in New Zealand. In 2000, Dr Glynn Owens, a professor (now emeritus) of psychology at Auckland University, conducted a survey of 1000 New Zealand GPs to determine the prevalence of physician-assisted dying in this country.
The research found that 3.5% had provided at least one physician-aided death at some point in their career, a similar percentage to the Netherlands, where aid in dying is lawful. Also, in the New Zealand survey, 2.7% of physicians admitted to having aided death without the explicit request of the patient. This may have been through palliative sedation, withdrawal of life support, or possibly something more ominous. Strictly speaking, terminating life without consent is involuntary or non-voluntary euthanasia, i.e. murder. And that is not legal anywhere in the world – not in the Netherlands, not in Belgium, not in Switzerland and certainly not in New Zealand.
Worse, the proportion of these types of cases was higher in New Zealand than reported in the Netherlands. The survey also found the availability or non-availability of palliative care had no effect on the physicians’ decisions to act with intent to hasten death.
The incidence of these involuntary physician-assisted deaths has reduced in the Netherlands and Belgium since legalisation of assisted dying. Are life-ending acts without patient request still happening in New Zealand? We don’t know. We don’t do any sort of reporting that would tell us. It’s the sort of thing doctors will only admit to in an anonymous survey.
Even opponents would have to concede that the End of Life Choice Bill, with its system of checks, balances and reviews, would give us much more information about end-of-life practices in New Zealand than we have now.
Trust in Dutch doctors is similar, if not a little higher, relative to other countries. An International Social Survey Programme collected data between 2011 and 2013 and found public trust in doctors was the highest in Switzerland, at 83%. In the Netherlands, the figure was 78%, while in Belgium it was 74%. In the United Kingdom and France, where assisted dying is not permitted, the figures were 76% and 75% respectively.
Dr Rob Jonquiere, a former GP and current executive director of the World Federation of Right to Die Societies. Photo/Andrew Warner/NewspixNZ.
Despite being the face of the right-to-die movement, Jonquiere has only helped a handful of people to die as part of his role as a general practitioner.
“I have assisted only two. I know three more I didn’t need to assist, because they died before the final request came, and I think about five or six did not even go into that phase. They had a request, but I could make the suffering bearable, or I had other reasons to say no. I had discussions with those two patients for three to six months before euthanasia was complied with.”
Did anyone ever change their mind? How did you feel about that?
“I feel okay. Because I act from the principle that you are the one who wants it, not me. I’ve had it happen only once. I can’t remember that I was happy about it or not. I know from that one time, two days later I practised euthanasia [on the patient]. It was just a moment where the patient said, ‘I’m not yet ready.’ They needed a moment of contemplation or realisation about what was really happening. That is why I want to know just before giving the injection – is this what they want?”
I asked how it felt to help someone to die.
“In none of the cases have I had any feeling of regret. One of the moments, I can even remember the smell of when it happened. It makes a big impression. I’ve always felt afterward, on the one side sorrow, because I lost a dear friend. Because talking to a patient about this kind of intimate, very personal issue, you get a kind of relationship, and you lose that relationship because the patient died. On the other hand, [I felt] a kind of happiness, that I could provide my friend with the last intimate wish they had. I had a couple of times where I dreamt about it. But I didn’t have sleepless nights. I had no second thoughts afterward.”
I wondered aloud whether some doctors do. “Certainly there are doctors who do and for that reason stop practising euthanasia. But they don’t say it’s a bad thing, they just say they cannot cope with that situation.
“You have to know someone. If you come to me, I’ll say, let’s talk about it. Come back tomorrow and we’ll sit down and have a serious talk. In a harsh way, you have to convince me that you are really suffering and I’m going to try and convince you that you’re not hopelessly suffering.”
I wonder whether those conversations are missing in New Zealand, and whether people who are contemplating a hastened death, for rational or irrational reasons, are talking to their doctors about it.
One of the reasons I’m in support of this law is so these conversations might happen more often. We are all afraid of dying, and when faced with it, we have wishes about how it might happen, and where it might happen, and with whom. But if your doctor isn’t going to listen to your desires – all of them – and take them seriously, why would you even have the conversation?
It’s my hope that with assisted dying as an option, the most desperate of us will discuss those wishes with their doctor, rather than doing something drastic and impulsive, which can only hurt our loved ones and our communities. Given 5-8% of suicides in New Zealand are people with grievous illnesses, perhaps with assisted dying we can help them live a little longer. Perhaps we can actually reduce the incidence of suicide in New Zealand. I believe it’s worth a try.
In a few months, we will find out whether our elected representatives will support that view. It is clear that current efforts to address suicide in New Zealand haven’t been working. It’s our national shame. But anything that encourages more people to talk to their doctors about death has got to help. And in my view, the End of Life Choice Bill will encourage exactly that.
Let’s hope our MPs boldly walk toward the light – and the bill passes.
Matt Vickers is the author of Lecretia’s Choice (Text Publishing). For more information, visit lecretia.org.
This article was first published in the April 2019 issue of North & South.
Read more about Esther »
Originally diagnosed late 2012 with a Grade 4 Geoblastomer Multiforma Tumour, I have had my brain cancer return after a four and a half year battle to beat it, followed by two years of remission. Due to the side effects from the first round of aggressive treatment, I was left disabled and live with daily pain.
With it now back, I am not able to do any further treatment, which means this will end my life.
Due to the type of cancer it is, this is a slow painful death as it on its own doesn’t kill me, instead it causes all of my body functions to shut down one at a time. This would leave me bedridden, and suffering from bed sores and everything that goes with that.
For me the passing of this bill would bring relief, and I would apply for it. However, like most overseas where they have this choice, I wouldn’t take it until the very last minute. My life would only be shortened by up to two weeks - the worst at the end.
And I would die in my own bed, surrounded by my memories and loved ones - listening to my favourite music. Holding my son’s hand (and with my faithful companion beside me on the bed) while I slip into sleep and then stop breathing.
I don’t actually want to die as my previous battle shows. However as a Christian, I am not afraid of death, just what I will be forced to go through before this comes.
Will I pass the strict conditions for application? Yes, I have a terminal illness and will apply when my doctors estimate I have six months or less to live; AND yes, it is irremediable and involves grievous suffering; AND yes, I am mentally competent and fully aware of what I am asking for. Three ticks (as required).
Unfortunately for me my previous treatments have also shown that I am in the approx 6% of people that painkillers don’t help and the last thing I want to do is die while in an induced coma (known as palliative or terminal sedation where they actually kill you by removing your feeding and fluid tubes) as that would not stop the pain, just my ability to tell people about it.
Do you think I am the only person in this position? Do you think that perhaps one day it could be you or someone you love facing this before dying? So please support this bill and vote YES.
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Thursday, 7 March 2019, 4:38 pm
Press Release: David Barber
Seventeen doctors who say too many New Zealanders die in severe pain and suffering have written to all MPs urging them to vote for a law change to allow medical assistance in dying (MAID).
Parliament’s Justice Select Committee is due to report on ACT leader David Seymour’s End of Life Choice Bill this month after considering a record 37,000 submissions.
Dr Jack Havill, of Hamilton, spokesman for the group, said it wrote to MPs in order to counter a campaign by opposing medical practitioners who are trying to sabotage the bill. He said the “Drs say No” campaigners had emailed every medical practice but obtained only 800 signatures from the country’s 15,000 registered medical practitioners since it was formed in 2012.
Dr Havill said the number of doctors supporting MAID exceeded the 37% in favour, with 11% undecided, revealed in a survey by the NZ Doctor magazine last year.
Ten of the doctors who wrote to MPs are retired. Dr Havill said: “It is a difficult issue and many practising doctors in favour will not express their views publicly because it is currently illegal.
“They do not want to be classed with the approximately 4% of doctors who break the law to help patients die in their final illness – according to two Auckland University studies.”
Dr Havill, a retired intensive care medicine specialist and past president of the Voluntary Euthanasia Society, said enough doctors were in favour to ensure that MAID would work effectively in New Zealand. International experience showed the number would grow after a law change, he said.
One doctor who signed the letter, retired GP Carol Shand, of Wellington, told the MPs: “My years in general practice, unable to support the requests of many patients for assistance in dying, have left me ashamed of myself, my profession and our NZ law.”
Rowan Stephens, a former GP from Auckland, said: “I carry a lingering guilt into retirement knowing that I was not always able to best serve my patients at the end of their life, due to the law. I failed in my duty, and did cause harm.”
The End of Life Choice Bill passed its first reading in Parliament by 76-44 votes in December 2017. Seymour has amended it so that if it passes its final stage, a law change will be subject to a binding referendum at next year’s general election.
Reports from Palliative Care Australia, providing assessments made by the clinicians themselves, show that even in hospice, at least 6 percent die experiencing severe pain and severe suffering from other symptoms. These include suffocating or choking to death or drowning in lung fluids, all of which induce terror. We’d be foolish to imagine the statistics are much different here in NZ. On this evidence alone, assisted dying must be included among the options available for end-of-life care and David Seymour’s End of Life Choice Bill must be supported.
Among opponents is the ‘Care Alliance’ which includes a group of medical practitioners, including some palliative care doctors, attempting to sabotage the EOLC Bill. It is emailing every medical practice in the country and inviting doctors to sign up to its charter ie ‘Drs say No’. However, since its formation in 2012, it has achieved only 800 sign-ups out of the 15,000 registered medical practitioners ( this is well under 10%).
In a 2018 survey done by NZ Doctor 37 percent of New Zealand’s doctors declared support for the legalisation of Medical Assistance in Dying in terminal illness, with 11% undecided. As has happened in other legalised jurisdictions, supporting numbers will grow once a law allowing Medical Assistance in Dying is in place.
Medical Assistance in Dying is a difficult issue for many NZ doctors, as at the moment it is illegal, and if in favour, they are circumspect about expressing their views publicly in case their patients and colleagues get the wrong idea. They don’t want to be classed with the approximately 4% of doctors who illegally help people to die in their final illness (2 repeated studies from Auckland University).
However, the doctors contributing to this document (part of a larger group) believe it is time to make their support for Medical Assistance in Dying clear, so that the public and MPs understand why there are many doctors in favour.
Some quotes from a group of doctors supporting ‘Medical Assistance in Dying' include:
Gary Payinda (Emergency Medicine Specialist)
‘The public needs to know that many doctors out there support medical assistance in dying. At the end of the day, my own reason for supporting it is pretty simple: if I was dying a miserable death (and some deaths truly are miserable, despite the very best palliative care), I would certainly want a caring doctor to be able to help me end my suffering. And if I'd want that option for myself--isn't it only fair that my patients would have that option too?"
Alastair Macdonald (Renal Physician)
I completely echo the comments made by Gary. There is a gentle pragmatism to these important sentiments.
Dr Libby Smales (Grief Counsellor and experienced Palliative Care and Hospice doctor)
‘I have been thinking about this issue a lot recently, after decades working as a Hospice doctor, when I left, I realised:
1) I had been working in a therapeutic bubble that was not and still is not available to every dying person.
2) Even in that privileged situation, some deaths would have been truly horrible without terminal sedation.
3) in the world outside the bubble things were and still are very different,
4) I have some sympathy for my Hospice colleagues who are so fiercely anti, like them, in my arrogance and ignorance, while I was ‘’ín’’ I believed that H/PC could and did, fix all of it for everyone, I had to get ‘’out’’ to see the truth.
5) I think we have it round the wrong way, we shouldn’t have to justify this overdue legislative change, the reasons for compassion and change, are well researched and compelling, I think the anti’s need to justify why not.
Stanley Koshy (General Practitioner)
‘There has never been a better moment to get into legislation an act as significant as Medical Assistance in Dying. There is a government that is supportive of the motion, an international movement with more territories legislating in support of MAID, a public that has indicated a level of maturity in accepting that this is the next forward step to take, and a group of doctors who are willing to ensure that this movement does not lose momentum.
Jay Kuten (Psychiatrist)
A good death is to be seen as a consequence of and an extension of good palliative care.’ ‘Say Yes to Patient Choice in Dying and No to playing God and choosing for them’.
Lannes Johnson (General Practitioner experienced in palliative care)
‘I have seen many miserable deaths, in rest homes especially (private hospitals too). Home dying in more peaceful. Unlike rest homes, nobody counts the ampoules in the home environment’.
Angela Hancock (General Practitioner)
“I am baffled, saddened and concerned that so many of our colleagues are unable to consider providing the support that some patients want (and need) when the end of their days is inevitable. I am baffled that they do not uphold the patient's right to refuse treatment and palliative sedation, both often leading to miserable situations prolonging the inevitable and causing suffering. This is tantamount to abandoning patients at one of their greatest times of need in my opinion. I must support conscience decisions in this situation but I object to the obstructive "we know best" for everyone approach. I would be honoured to sign an open letter expressing support our view here and thank you everyone for your willingness to be seen and heard’.
Rowan Stephens (General Practitioner)
I carry a lingering guilt into retirement knowing that I was not always able to best serve my patients at the end of their life, due to the law. I failed in my duty, and did cause harm. My motivation is to change the law so everyone has a possibility of choice at the end of their life, and well funded hospice care is integral to this aim. Recently I decided to change out of my (morning volunteer) End of Life Choice T shirt before attending my afternoon volunteering for Hospice. Not wanting to upset any hospice supporters I was actually being cowardly.
Frank Kueppers ( Urologist specialising in Oncology) I support ‘Doctors say Yes’.’
James Davidson (Pathologist)
‘I believe that everyone should be able to choose a peaceful painless and dignified end of life, when faced with the prospect of a prolonged, painful or miserable one.’ 5 John Musgrove (General Practitioner) As General Practitioners we should provide high-quality, supportive health care for all our patients' lives. The Hippocratic Oath is always brought up when people opposed to Assisted Dying criticize the proposed legislation. I wonder if they have ever read the Oath or know Hippocrates lived over 2000 years ago. I would like to quote one of our mentors and a Senior Professor in Otago who told us when we graduated " Thou shall not kill but thou shall not strive officiously to keep alive. With the emphasis on officiously, this is what proper caring really means.
Carol Shand (General Practitioner and Sexual Health Physician)
My years in general practice, unable to support the requests of many patients for assistance in dying, have left me ashamed of myself, my profession, and our NZ law. All of us need to adopt the principle of patient autonomy which we teach to students but only partially believe in.
Miles Williams (Cardiologist) The 3rd statement of the World Medical Association Declaration of Geneva
“I will respect the autonomy and dignity of my patient” and doctors accept this unquestionably until the patient asks for relief from their suffering by medical assistance in dying. We then appear to abandon our belief in the basic human right to self-determination. Some doctors say it is unethical – it is not. Some say it puts the vulnerable at risk – there is no evidence for this. Clarity of thinking, objectivity and compassion for the individual, should replace beliefs and practice based on culture and dogma.
Jack Havill (Intensive Care Medicine Specialist)
Patients are very vulnerable as they often have to shift between home, hospital, hospice and rest home. A friend of mine, a strong advocate for assisted dying, who died from multiple myeloma in 2018, was shifted from hospice to a rest home with inexperienced staff. She was in a highly drugged state, and in her three week stay developed fractures caused by falling out of bed 3 times. This necessitated hospital admission. These last few horrible weeks could have been avoided by a law allowing medical assistance in dying. 6 In conclusion, it is clear that the general public (65-75%), in repeated scientific surveys over many years, want Medical Assistance in Dying legalised. We would encourage Members of Parliament to consider carefully the supporting evidence. One day we will look back and wonder why we allowed patients to suffer so much at the end of their lives.
Margaret Sparrow (Sexual Health Physician)
Lannes Johnson (General Practitioner with lot of experience in palliative care)
Frank Kueppers ( Urologist specialisaing in Oncology)
Elizabeth Smales ( Palliative Care Physician and Grief Counsellor)
John Musgrove (General Practitioner)
Miles Williams (Cardiologist)
Alison Glover (General Practitioner/Sports Medicine)
Jonathon Baskett (Geriatrician)
Jack Havill (Intensive Care Medicine Specialist) - contact person for comments or queries - email: email@example.com) Cell: 021 330255
Source: Gisborne Herald
As in New Zealand, assisting a terminally ill person to end his or her life is a criminal offence in the UK, punishable by up to 14 years in prison. This extends to helping a person travel to Switzerland, where assisted dying is legal.
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Source: Australian Aging Agenda
The nation’s peak palliative care body is reviewing its position on euthanasia and physician-assisted dying after it became legal in Victoria, and has released two key reports on assisted dying around the world.
© End-Of-Life Choice • PO Box 321, Gisborne 4040 • Email: firstname.lastname@example.org