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.
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.”
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.
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.
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.
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.