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Assisted dying in NZ – Expert Q&A

Assisted dying in NZ – Expert Q&A

A referendum next year will decide whether New Zealanders should be allowed to request assisted dying.

Experts say if the End of Life Choice Act comes into force following next year’s public referendum, the effects will impact every New Zealander in some way. Those with experience in the field remain divided on the issue, so we asked them what their research and lived experiences have told them about assisted dying.

The SMC asked experts working in psychology, nursing, law, and palliative care to discuss the finer points of the Act and end of life care.

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Dr Michal Boyd, Associate Professor & Nurse Practitioner, School of Nursing, University of Auckland, comments:

In your view, what are the most important aspects of this Bill that remain up for discussion?*

“One of the main issues in this Bill is the designation that a disease will ‘end the person’s life within 6 months’. Prognosticating death is a very inexact science. In fact, a meta-analysis found that clinicians were wrong in predicting death within 6 months 25% of the time. It is particularly difficult to prognosticate death from end-stage chronic diseases. Additionally, death prognostication for cancer is becoming less certain as more effective therapies are developed for treatment. A cancer can now develop into a chronic illness and may not be necessarily life limiting.

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“The Bill is very vague regarding the vexing question of mental capacity and competence. Mental capacity is not a black and white, yes or no question. Mental capacity is a continuum and is very situation specific and can change over time depending on the illness. Questionable mental capacity is one of the most difficult issues for healthcare professionals to resolve. It will be a heavy burden for the psychiatrist that is mantled with the decision about whether someone has the mental capacity to choose assisted death when mental capacity is unclear. For example, a person with frontotemporal lobe brain disfunction often appears to be mentally intact because frequently their memory is not affected. However, their executive function and judgement can be greatly affected and this could easily be missed in a single examination by a psychiatrist that has not observed the person over a longer period of time. Conversely, individuals in early stages of mild cognitive impairment are able to make informed decisions about significant life events, including their end of life wishes, although they may perform less well on a memory evaluation test.”

How should terminal illness be defined, and how can we be sure we’re getting it right?

“Determining terminal illness with less than 6 months to live will certainly be an educated ‘guess’ by expert clinicians and we can expect that clinicians will get it wrong about 25% of the time. However, it is important to remember that ultimately the decision to complete assisted death will be with the person who is requesting it. We know that in the US states where assisted death is legal, less than 1% of all deaths are assisted, and that of those that do request assisted death, almost one third will not utilise the prescriptions they have obtained to hasten their death and will experience death without clinician assistance.”

Should healthcare practitioners administering assisted dying receive additional mental health support?

“Absolutely. This will not be a common occurrence for clinicians and will likely result in significant personal, moral, and ethical reflection and internal conflict. However, currently most clinicians face very difficult moral and ethical dilemmas in all areas of practice (that have nothing to do with assisted death). There often is not a coordinated approach to professional supervision and psychological support to process the complexities of modern healthcare in general. It would be good to see better emotional support for clinicians. Palliative care providers attend to their emotional needs in a coordinated fashion, and it would be helpful if this type of care was more widely available.”

Conflict of interest statement: No known conflicts of interest regarding this issue.

Associate Professor Colin Gavaghan, Faculty of Law, University of Otago, comments:

So the Bill has passed, but what does that actually mean?

“What it means is that there will be a referendum, posing a Yes/No question on accepting the Bill. That will take place at the same time as the General Election next year. If the referendum passes, then the Bill will come into law a year later. So we’re probably a couple of years away from any change in the law, even if the referendum returns a Yes vote.”

As it stands, could this Bill be enacted in law without contradicting other current law or fundamental human rights?

“Re: contradicting other parts of the law: there were certainly questions about that at the outset. For instance, New Zealand law allows anyone to use physical force to prevent another person’s suicide. There was a chance we’d end up in a situation where I’d have the right to have X assist my death, but where Y would have the legal right to stop him! I think the various stages of the Bill’s passage have worked pretty well in terms of ironing these out.

“Regarding human rights: I suppose it depends on which rights you have in mind. The right for competent adults to make their own medical decisions is one that our law takes pretty seriously elsewhere, even up to and including life or death decisions. The big issue, again, will be in making sure that issues like competence and coercion are adequately provided for.

“The new law specifically addresses these sorts of issues – for instance, it requires the physician to ‘do their best to ensure that the person expresses their wish free from pressure from any other person.’ (Section 8(2)(h)). Overall, I think it does a good job of balancing freedom and safety. But of course, opinions will differ.

“The main thing I’d encourage is for people to read what the Bill actually says. There will be all sorts of claims flying around in the lead-up to the vote, and they won’t all be accurate.

“I also suspect we’ll hear a lot of stories about what happens in other countries. That’s valuable evidence, of course, but again, we need to bear in mind that the laws they’ve enacted might be quite different to the law we’re being asked to vote on.”

What are the most important aspects of this Bill that remain up for discussion?

“The referendum will be on this version of the Bill, so that isn’t really up for discussion and debate in Parliament. Unlike, say, the Brexit referendum in the UK, the details here have been worked out before the public vote.

“The sorts of issues that will probably dominate the debate, though, will be to do with checks and safeguards. Some opponents would always be opposed to assisted dying, no matter what safeguards were in place, but those sorts of arguments – often, though not always, based on religious views – don’t seem to appeal to very many people in this country.

“It’s pretty clear from opinion polls that most New Zealanders are extremely sympathetic to the sort of situation in which Lecretia Seales found herself a few years ago, and would want people to have the right to choose in those sorts of circumstances. The question is whether that can be allowed without endangering people in other situations. That’s where I expect to see the debate focusing.

“The Bill has been about as thoroughly scrutinised, debated and reworked as any I’ve seen – nearly two and a half years of it. There have been tens of thousands of submissions to be scrutinised and well over a hundred suggested amendments through the Supplementary Order Papers process, so whatever else might be said of it, no-one can seriously suggest that this is a rushed and ill-considered Bill.”

How should terminal illness be defined, and how can we be sure we’re getting it right?

“I think we should be allowing people to opt for euthanasia when they may have a chance at survival. After all, we allow them to make other life-ending choices in the face of uncertain prognosis. Think about someone who decides not to undergo another round of chemotherapy, or who carries a Do Not Attempt Resuscitation notice, because they don’t think the small chance of survival is worth all the additional suffering that would be involved.

“The truth is that it’s impossible to be 100% certain about such things. A ‘miracle cure’ could always be found tomorrow. Some of us may want to hold on to every last hope and breath. Others might decide that, when the prognosis is just too bleak and the quality of life too poor, they would rather go out on their own terms. I think both choices should be respected and supported.”

Conflict of interest statement: I have been involved in advocacy for aid in dying for over 20 years, in the UK and in New Zealand. This has involved working with politicians in drafting legislation and acting as an expert in the Lecretia Seales court case.

Dr Ofa Dewes, Pacific health researcher, Maurice Wilkins Centre for Molecular Biodiscovery, University of Auckland, comments:

Note: Dr Dewes has researched end of life circumstances of older Pacific peoples and the experiences of family carers during the end of life period and after bereavement.

What cultural considerations should the public have when we’re thinking about these potential law changes and who they will affect the most?

“Most affected will be those who care deeply about their loved ones and life after death, and the stigma it will generate throughout the lives of those affected. We keep the memories of our loved ones alive and they journey with us in so many different ways e.g. we remember them in our prayers, we acknowledge them as we approach the marae and in the marae, we talk about them to the grandchildren, and in stories we tell through social media or film, etc.

“Consideration should also be given to the differing expectations of family members as well as religious and cultural needs, and how this law change may not only impact life but also the human conscience and spirit (soul). For Christians, this is also an important time of prayer and worship with the church family.

“Consideration should also be given to the competency and ability of the person to know when and how to communicate, and to whom, when a person has reached end of life stage – is it the health practitioner whose role we see primarily is to preserve and protect human life? Do they know for sure when a person will die? within six months?

“When my father was diagnosed with stomach cancer, the doctor could not and would not tell us when he would die because he simply did not know.

“Placing a loved one in a rest home or hospice was an emotional and a very tough decision for caregivers and their families to make, and usually only undertaken when support needs were extremely high. The priority for patients and their families was to be cared for in the comfort of their own home, surrounded by their family and friends.

“As part of my research, a family carer told me how happy she is in the knowledge (sense of empowerment it gives her) that she’s done her duty to her parents right to the very end – caring for her mum until she died, and then later caring for dad until he died.”

What about regional equity? Are patients likely to face barriers to end of life care depending on where they live?

“Pacific peoples are highly urbanised however they continue to face poor access to care and quality end of life care from services within the towns and cities where they live. Barriers are due mainly to communication challenges, lack of cultural understanding by staff, poor clinical care, logistical difficulties, discrimination and financial stress due to a range of lived experiences and the relentless role of the caregiver(s).

“Barriers are not only restricted to patients – family carers also face barriers to health care services as they are the ones that need to navigate the system on behalf of their loved ones. Assisted dying is not going to overcome these barriers, rather it will likely increase and add to the inequities and inequalities Pacific peoples currently face, even at end of life.”

What cultural considerations should health practitioners have when they are considering aiding a patient in assisted dying?

“There is a current need for culturally competent staff. What’s culturally appropriate and applied now in life should be carried through to the end of life period also. One of my research participants was told on the phone ‘your husband is going to die anyway, just dehydrate him’. Quality of care at the end of life is not uniformly applied among health practitioners. Cultural consideration does not mean practitioners should know how to greet us in our own languages – it’s more important that they have the heart and empathy to care deeply about the needs of the person they are caring for and are able to apply their skills and knowledge to the best of their ability.

“We value our lives throughout the life course and a quality death is not limited to the patient alone, rather our beliefs and values affect the whole family and communities they engage with not only where they live.

“Decisions regarding the health, welfare, and care of an older loved one may involve a primary caregiver including other immediate or extended family members.

“Patients are more likely to talk about their end of life priorities with their primary caregiver or immediate family members because these are the people they love and rely on to care for them and make decisions on their behalf.”

General comment

“Caring for loved ones at home, at end of life, is very important due to cultural considerations and desire of family members to continue to provide their love and support at a critical time of life. This time is part of life’s course. It’s life’s journey, not taken alone by the patient, but together with loved ones. A time to value their lives and care for each other, as well as honour the life long service of loved ones to family, community, and society as a whole. It’s a time to spend their final days, months, even years together – yes it’s a difficult time however with it comes the strength of the family to rise above it, not run away from it. A time to provide comfort in their prayers and in the knowledge that they will always be beside their loved ones, caring for them with respect and providing comfort, as well as for each other including the main carers themselves who carry the burden of care.

“The most vulnerable, our older adults, rely on their families to care for them, including making important decisions about their care at home. Even if they wanted to be cared for in residential care, or hospice, or even in hospital – that would be impossible as the current system would not be able to cope due to lack of resources such as culturally competent staff, and facilities. In this regard, Pacific families are providing a huge service to society, at their own cost, by caring for loved ones at home, at end of life.

“The proposed law change will likely impact the cultural, physical, emotional, social, spiritual, health and wellbeing among the living – children, young people, adults and older adults, immediate and extended families, friends, communities (e.g. workplace, churches, social groups, clubs), not only here in NZ but also in the Pacific region.”

Conflict of interest statement: My research on Pacific Life and Death in Advanced Age was funded by MBIE through the Ageing Well National Science Challenge, and administered by the University of Otago. I’m an elected member of the Otara/Papatoetoe Local Board for Auckland Council, and Board Member of Tongan Health Society (Auckland-based healthcare service provider).

Dr Rhona Winnington, Lecturer, Nursing, AUT (North Shore campus) comments:

How does the Hippocratic Oath fit in here, as it explicitly prevents the administration of lethal drugs?

“This is a difficult point and a bone of contention for many in the healthcare profession. Drugs that are potentially lethal are given every day, just in doses that do not cause death. There is a very fine line between relieving suffering and giving too much medication. But the Hippocratic Oath is also based on beneficence and non-maleficence and so this is where doctors (and nurses) can decide if what they are giving is in the best interests of the patient.

“It would be easy to argue, however, that by not allowing assisted dying, harm is caused to some individuals. A position of balance is needed, and this may be where some practitioners feel able to support this Bill.”

How will health professionals ensure the patient making the decision is of sound mind?

“Processes will be developed to ensure individuals are competent to make appropriate decisions. The Bill already states that individuals must themselves request assisted dying. After this they will be assessed independently by two doctors, and a psychiatrist if necessary.”**

What mental health support are people in end-of-life receiving? How will these potential law changes impact their care?

“Currently for those receiving palliative care via one of the hospices in New Zealand, there is a wealth of expertise to support the mental health of those who are dying and their families. Counsellors, social workers, physiotherapists, art therapists, etc, are all available free of charge at the point of delivery. I am unsure that the new Bill will actually change any of these practices, however, there may be some issues around patients requesting assisted dying while under hospice care, and that will not fit with the ethos of hospice.”

What kind of pressure will these considerations have on the health system?

“I think the question should actually be ‘what kind of pressure will there be on the unwell individuals to opt for assisted dying, as opposed to continuing with care for chronic or palliative conditions?’ I say this, as the literature from the US, for example, is illustrative of an insurance based system that will now pay for assisted dying rather than palliative care. In Canada they are now advertising assisted dying in the waiting areas of hospitals. This is hugely problematic.”

What are the most important aspects of the Bill that remain up for discussion?

“There are many points that require further clarification, for example access to patient records for those assessing suitability for assisted dying, the protection of healthcare professionals should they wish to be a conscientious objector; but more importantly is the concern that, like suicide, there will be a contagion effect once this becomes law. We need to ensure that the Bill is watertight to prevent coercion and the slippery-slope effect that has been seen in The Netherlands, Belgium and Canada for example.

“A further significant point of concern is not having any stand down time following agreement to assisted dying. Canada and Australia have a minimum ten day cooling down period, but to have no such requirement has the potential to invite rash decision making by the individual involved when experiencing a ‘bad day’ for example, or being pressured by others to seek assisted dying for a variety of reasons.”***

General comment:

“In theory I can completely understand why there are many supporters of this Bill. I am very much a supporter of individuals having a right to make choices for themselves, as we do every day throughout life. However, this Bill, as with many of those passed in other countries is problematic, particularly when we are talking about medical assistance in dying (MAiD). If we look at Canada, for example, where you can have MAiD or be prescribed medication to take yourself at a point when you are ready, the numbers for MAiD are significantly higher than the DIY option. What is behind this is not yet known, but we need to understand this before the Bill is accepted by the public. The Canadian data presents a worrying picture which has the potential to be transposed to New Zealand culture, particularly given our elderly population.”

Conflict of interest statement: No conflict of interest.

Dr Christopher Gale, Consultant Psychiatrist and Senior Lecturer, Dunedin School of Medicine, University of Otago, comments:

What are the most important aspects of this Bill that remain up for discussion?

“My understanding is that the Bill is now draft law and judges need to interpret what it means. The medical profession, however, has ethical standards that do not at times agree with the law.

“This means that there are two points of discussion (a) if this should indeed be confirmed in law by a referendum and (b) if it is ethical for doctors to perform euthanasia. Legal does not mean it is ethical.”

How should terminal illness be defined, and how can we be sure we’re getting it right [i.e. not allowing people to opt for euthanasia when they may have a chance of survival]?

“A terminal illness is one that will progress to the point where it will cause death. This is harder to sort out clinically. Prognosis in medicine is a difficult art, and most doctors are not prepared to be precise – they will talk in probabilities. We have all seen people who we thought would die survive and live a long time: we have also seen people we thought had no risk dying. This is why doctors are very leery of saying things like ‘six months prognosis’. We are quite aware that we are wrong more often than not.”

What mental health support are people in end of life care receiving? How will these potential law changes impact their care?

“Most people at the end of life are involved with a hospice service or are offered one. The doctors in those services are quite skilled at relieving distress and pain. They talk to psychiatrists when they need advice about management, but in practice this is fairly rare.

“At this time, we don’t have an extensive mental health service, and most psychiatrists work with the severely mentally ill. Our aim is to manage some very distressing symptoms, engender hope, enable recovery and preserve life, particularly minimising suicide.

“Euthanasia changes the equation as some people will challenge what is usual care – providing pain relief at adequate doses and stopping futile treatments – as hastening death, or request the doctor actively kill the patient. Most doctors are not prepared to do that. We are afraid that this will destroy our working relationship with patients and their families.

“This Bill may mean that access to care becomes less, not more. At the end of life, good care should be a universal experience.”

Should healthcare practitioners administering assisted dying receive additional mental health support?

Assisted dying is unethical. In particular, no physician should be forced to participate in euthanasia or be forced to make a referral that will effectively enable euthanasia.

“All people who have been involved in traumatic and terminal events may need at times support. I believe all people deserve this regardless of whatever they have done – we have mental health services in courts and prisons for that reason. At present there is no funding (to my knowledge) for such support. At present many doctors and other health workers will not want to be involved at all in any institutional support system.”

What kind of pressure will these added considerations place on people working in the health system?

“Ideally, there should be no additional pressure because either the law is not confirmed in referendum or the safeguards built in mean that there is never coercive pressure placed on doctors and services to provide this.

“However, a survey in Holland found that GPs feel at times pressure – even to the point of feeling emotionally blackmailed – to provide euthanasia.

“Most doctors will do what they currently do with abortion. Avoid being involved. In most places (Canada would be a good example here) most doctors avoid this and a few doctors terminate most lives. These practitioners will expect to be paid, and the money for this will not be going to other services.

“If there are requirements that doctors shall perform euthanasia and or be required to make a referral, there are about 1800 doctors to date who have pledged to not do so. I am one of them. There are about 16,000 doctors in NZ. If the Medical Council is forced to move to ensure over 10% of the doctors currently working, there will be a considerable shortfall in the workforce.”

Conflict of interest statement: I have no funding from any sources on this issue and no drug company funding for research, nor am I a member of any political party. I am a Christian, affiliated with a newer church. I have signed two open letters against the current Bill: one for medical practitioners and one that is open to all. I am a co-author of a letter on suicide and euthanasia, now public, that was delivered to MPs before the third hearing. This will be updated with new data as available – as an academic I’m aware of more research occurring.

Dr Martin Woods, School of Nursing, Midwifery and Health Practice, Victoria University of Wellington, comments:

How will conscientious objection work for health professionals?

“There will be significant problems within the health care system if and when some doctors and nurses exhibit a willingness to commit an act of euthanasia when others are strongly opposed to such an act.

“I believe that several doctors and nurses will not only opt out of the entire process, but that they will actively resist it. In doing so, they will no doubt experience those instances of interpersonal disharmony and acrimony that may well occur after their refusal to participate. For newly qualified doctors and nurses, the pressure to conform will be even higher, because they will feel pressured to not ‘rock the boat'. I therefore have great concerns in both instances, i.e. whether they refuse to participate, or whether they agree to participate. In the latter case, I really do wonder just how a decision to participate in the delivery of lethal doses of medication, remaining at the bedside until the act of dying has been concluded, and then carrying on with their other work will affect them both psychologically and morally in the medium to long term.

“I realise that all of this could all be a highly difficult situation for those doctors and nurses who are both opposed to and accepting of euthanasia. This ‘conscientious objection’ situation will of course be permitted under the proposed legislation, but it will come at a considerable price. For instance, there are known cases of both personal and interpersonal conflicts between nurses in countries such as the Netherlands who are prepared to perform an act of euthanasia, and those who are not. Nurses frequently suggest that euthanasia presents them with highly complex ethical quandaries, i.e. they feel that their involvement introduces significant personal conflict, moral uncertainty, guilt, frustration, fear, and secrecy, let alone the anxiety provoking challenges to long-established social and religious values or rules.

“For those doctors and nurses who do decide to take part in such an act, I have no doubt that some if not many of them may be haunted by the words of an ex-member of the Netherlands’ five euthanasia oversight committees, Professor Theo Boer: ‘We shouldn’t pretend that killing a human being whose natural life is not ended is normal. That is certainly not the view of Dutch doctors – they continue to stress that it is emotionally very burdensome to do euthanasia.'”

What are the most important aspects of this Bill that remain up for discussion?

“In my view, one of the most glaring aspects of omission during the entire process of the progress of the End of Life Choice Bill through Parliament has been the distinct lack of adequate discussion and consideration regarding the expected roles of medical and nursing practitioners. Essentially, after following the requirements of the Act, should it be passed, these individuals will be expected to administer ‘a lethal dose of medication’ to the person requesting euthanasia. In response to such a presumed responsibility, many doctors and nurses have significant objections to the very notion of being involved in the deliberate termination of another human being’s life.

“This objection is a profound one, and not one that is just based on anecdotal evidence alone. For instance, recent research has also shown that almost two thirds of doctors do not wish to see euthanasia legalised in New Zealand (Oliver, Wilson & Malpas, 2017). Furthermore, and even though the percentages of general nurses who appeared to have fewer objections to euthanasia legislation have been claimed to be much higher, there is evidence that large numbers of nurses who work exclusively with dying patients (i.e. Palliative Care/Hospice nurses) remain strongly opposed.

“Secondly, I would also like to point out that the ‘Morphine myth’ continues to prevail in many statements. This myth is based on the notion that, in most cases, all that is needed is a slight increase in the dose of Morphine and the patient will slip into a gentle sleep that they never awaken from. This is, of course, nonsense – no palliative care nurse that I have ever come across has ever supported or maintained such a misnomer. Instead, as our own research projects have clearly shown, all (100%) of the palliative care nurses surveyed and interviewed believe that higher doses of morphine do not cause premature death. Indeed, such patients are then able to get on with life, often enabling them to get out and about, go about their routines of daily living, meet friends, go shopping, etc.

“Instead, I think that it should be made clear that to induce death on request (as, for instance, is practised in the Netherlands), physicians are encouraged not to use morphine but to use neuromuscular blockers and coma inducing drugs such as Thiopental or propofol. In high doses, these are indeed lethal drugs that will kill any individual. Doctors and nurses are literally being asked in the End of Life Choice Bill to not only deliver lethal drugs, but also ‘be available to the eligible person until the person dies‘. We are literally asking a doctor or a nurse practitioner to not only deliver the lethal doses, but to remain and observe a person die from the effects of such drugs. This carries an enormous burden on both patient, relatives and practitioners, because even then, it should be noted that there is no absolute guarantee that some patients at least (and no doubt any attending relatives) will not experience considerable physical or psychological trauma during this process. It goes without saying that the psychological trauma that such demands may have on attending doctors and nurses has not been fully considered in the proposed legislation.

“It is therefore unsurprising to me that huge numbers of submissions (nearly 39,000) to the Parliamentary Select Committee, to which numerous health practitioners contributed, was so heavily against any enactment of the proposed euthanasia legislation (by a margin of 90.2 per cent opposed the bill, 8.1 per cent in favour, and 1.7 per cent neutral or unclear). This suggests widespread opposition to any euthanasia legislation among those who care for dying people on a day to day basis. Hence, I find it incredible that the views of the Medical Council of New Zealand, Hospice New Zealand, palliative care nurses (and their organisation, the PCNNZ), and many others should be so easily disregarded and ignored by a majority of parliamentarians and, if public opinion polls are to be believed, by members of the general public as well.

“In regard to the presumed role of nurses in any act of euthanasia, I think that it might be worth remembering that although nurses do take part in the few countries where euthanasia is practiced, and in the proposed New Zealand legislation nurse practitioners are included, the activity of actually delivering the ‘lethal ‘dose’ is essentially considered to be the realm of the physician, often with nurses assisting. Yet, rather than just assisting, and no doubt doing all those care-based activities that nurses are so very well prepared to do, there is at least some evidence that some nurses do more. For instance research has also revealed that a fifth of Belgian nurses admit to being involved in the assisted suicide of a patient, and that nearly half of these (120 out of 248) said that this had occurred in situations where there was no patient consent. My point here is a simple one, i.e. not only may physicians be unwillingly pressured into performing an act that they regard as quite contrary to the meaning of the Hippocratic Oath, but nurses too may feel obliged to take part. For many nurses, this would be a direct challenge to their longstanding commitment to professionally care for the dying, albeit equally challenging to their perceived role of patient advocates and defenders of their rights to autonomous choices. Nevertheless, I still feel that many nurses will not wish to be part of an act that kills another human being in front of their eyes.”

Conflict of interest statement: No conflict of interest.

*A previously printed response by Dr Michal Boyd misinterpreted a clause in the Act around advanced age. This response was removed on 22/11/2019.

**This paragraph previously stated that the NZ legislation included a stand down period of 9 days. This was incorrect and removed on 22/11/2019.

***This paragraph previously stated that the NZ legislation included a stand down period of 9 days. This was incorrect and removed on 22/11/2019. An amended statement by Dr Rhona Winnington was added on 25/11/2019.

NB: Additional links to cited sources were added to the article on 26/11/2019.


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