Extending the Oregon Right to Die Law. Evidence of a “Slippery Slope”?

A recent article in the Washington Post describes moves in Oregon, USA to try to extend their Death with Dignity Act to include help for those suffering from degenerative diseases such as Motor Neurone Disease, Parkinson’s and Alzheimer’s. Related discussions are taking place in other US states and in Canada. For example, a recent paper published in the academic journal Geriatric Nursing reports that 83% of a sample of elderly care nurses in Quebec were in favour of extending the Medical Aid in Dying legislation to include incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity. In Ontario a recent legal case indicated a broader interpretation of the “reasonably forseeable” death requirement in their Medical Aid in Dying legislation, allowing it to cover someone with chronic osteoarthritis. In interpreting the law the judge explained “the natural death need not be connected to a particular terminal disease or condition and is rather connected to all of a particular person’s medical circumstances.”

The Oregon law has been in effect for 20 years without extension, but it is limited to those who have a life expectancy of six months or less, and who have sufficient mental capacity to make a clear life-ending decision. MDMD has consistently argued on behalf of those who are suffering unacceptably and incurably, but whose life expectancy is longer than six months. We are particularly concerned about those, like Alex Pandolfo, who suffer from dementia, which can be very unpleasant in its final stages, and is now the most common cause of death in England and Wales.

The Oregon law has been used as a model for right to die legislation in other US states, such as California and Colorado. An attempt to use the Oregon model for the UK was rejected by the House of Commons in September 2015. One of the arguments used by those who oppose even this limited form of right to die legislation, is that it would be the start of a “slippery slope” leading to much broader legislation in future. Is the current debate in Oregon and elsewhere evidence for this?

MDMD think not. However, it may be the next step along a carefully considered and difficult path towards a safe, compassionate and workable approach to dying in our modern world of advanced medical sophistication, where people live for much longer, but where more people are enduring a long period of suffering before their eventual death.

It is helpful to look back at other changes in legislation to see how they have been introduced. In 2018, in the UK, it is appropriate to consider the right to vote. This year we celebrate the 100th anniversary of women first gaining the right to vote. But not all women. Only those who were “over the age of 30 who were householders, the wives of householders, occupiers of property with an annual rent of £5, and graduates of British universities”. It was another 10 years before all women over 21 had the right to vote, bringing them in line with men, and not until 1969 when the voting age for both men and women was reduced to 18. Was this a “slippery slope” that should have been prevented? In 2018 it would be a brave person to suggest that it was. Rather, it was a cautious, step-by-step, considered, and hard-won campaign for equality and representation.

Another example of developing legislation is the introduction of the “horseless carriage”. In the early years, (1865-1896), for public safety, self-propelled vehicles had to be preceded by a pedestrian waving a red flag or a lantern. Since this was relaxed, cars (and their drivers) have caused much loss of life and serious injury. They still do. Importantly, the lives lost are not those of incurably suffering people who, after careful consideration of their likely future and the available alternatives, have decided that their best option is for their lives to end. Instead the lives lost in “road casualties” are predominantly those of healthy, active, often blameless, people whose lives are tragically cut short.  Although a succession of legislative changes have improved car safety considerably, the risk is still there. Instead of banning cars, society accepts this risk, killing on average 5 people per day in Great Britain in 2016, and seriously injuring 66 people per day.  This risk is far greater than even the worst fears of those concerned about the risks of possible abuse of any proposed assisted dying legislation. Was allowing self-propelled vehicles, and subsequently weakening the restrictive red-flag law a slippery slope that should have been resisted in order to protect vulnerable people: passengers; pedestrians; cyclists etc.? No, a balance was found which society deemed acceptable. Many laws were gradually introduced to improve road safety when the risks were found to be unacceptably high: driving tests; vehicle safety checks; compulsory wearing of seat belts; drink-drive limits etc.

Many analogous situations exist, for example legislation concerning gun control, where public safety, in particular protecting “vulnerable people“, has to be balanced against freedom of choice for the individual.

In considering what assisted dying legislation to adopt, and how any first step might later be extended, it would obviously be preferable to get the “right” law in the first place. In practice, in some jurisdictions, a cautious, step-by-step approach may be required. It is clear to MDMD supporters that the current Oregon law doesn’t go far enough, as it leaves many who suffer incurably and intolerably without the compassionate assistance to die they would like. We welcome the debate to broaden the Oregon law and wish the campaigners there success. We hope that the UK will learn from the Oregon experience and adopt a broader initial step, taking into account experience from other countries such as Switzerland, the Netherlands and Belgium.

What is also clear is that talk of “Slippery Slopes” is not appropriate in a serious discussion of how to introduce legislation which is both compassionate, in allowing people the options they want to avoid suffering at the end of life; and safe, in its protection of vulnerable people.

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The courts may be able to wait, but Omid can’t.

The latest stage of Omid’s legal case to be allowed an assisted death in the UK was heard in the High Court on 7/8th March 2018. The Daily Mail reported it here.

Omid’s legal team argued for the right to cross-examine expert witnesses – in particular to question the written evidence given by Baroness Ilora Finlay. Baroness Finlay is the primary expert witness brought by the crown to oppose Omid’s claim. She is professor of palliative medicine at Cardiff University and chair of the Board of Trustees of the National Council for Palliative Care. She is also an outspoken opponent to any change in the law on assisted suicide.

Details of Omid’s legal case are available here. Particularly interesting are the specific questions that Omid’s team wish to put to Baroness Finlay in section F. Examples include “the harmful impact of the absolute ban upon people in Omid’s situation and the extent of the interference with their rights of autonomy and bodily integrity” and “whether there is a rational connection between the absolute ban … and the identified aims of protecting vulnerable people and the protection of morals”.

Further questions include “Whether there is any causative link between the availability of palliative care and a jurisdiction being more permissive or prohibitive” And “Whether a  more  permissive  approach  is  likely  to  have a  negative  impact  on doctor-patient relationships and public trust in the public health system”. Expert witnesses on the two sides of the debate appear to bring contradictory evidence.  A recent study found that the leading palliative care systems in the EU were in Luxembourg, UK, Belgium and the Netherlands – 3 out of 4 of which have had legalised euthanasia for between 9 and 16 years. We need a thorough investigation of the facts and careful examination of the claims being made. The High Court may be an appropriate place for this.

Unfortunately, it does not seem that we will hear this cross-examination of evidence any time soon. At the end of the two day hearing the court conclusion was “…We are going to adjourn our ruling on this preliminary issue until the judgement in Conway is known…”. (“Conway” is the case of Noel Conway, which, though related to Omid’s, is restricted to cases of terminal illness where the life expectancy is six months or less. Omid’s case is significantly broader than this.) The Conway case returns to court in early May, with the ruling probably not being reached until a few weeks later.

In the meantime, Omid continues to suffer – increasingly badly according to what he says on his crowdjustice web page: “My health is very poor now and I just hope all this can be over soon so I can end my life. … It is torture for me and I don’t understand what is the use of all this suffering. The funny thing is that those who are against me say they are doing this in name of human rights. Whose human rights? Not mine it seems.”

He seems more convinced than ever that he wants his life to end as soon as possible. Perhaps he will find a way – but, short of refusing food and drink, there is no way he can do this in the UK without illegal help.

Where is the palliative care that opponents to a change in law tell us make assisted dying unnecessary? Why isn’t it working for people like Omid? How many other people are also prevented from having the good death they wish for, when that is a peaceful medically assisted death at a time of their choosing, and who instead have to end their life in unwanted, prolonged and unnecessary suffering?

In the face of incurable suffering, despite the best palliative care, for some people, like Omid, the doctor-patient relationship seems badly broken, and can only be repaired by a change in the law.

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Is the Dutch Euthanasia law working as intended?

The Daily Mail reported recently on a number of euthanasia cases in the Netherlands which are being investigated over concerns that the correct procedures may not have been followed, leading to euthanasia of people who possibly did not meet the strict criteria set out in the Dutch legislation. See Daily Mail articles “Dutch police investigate four euthanasia cases…” and “Police probe five suspicious killings by lethal injection carried out by Dutch doctors…

This demonstrates an important process to check that the intended limits of their law are followed. The cases involve some patients who do not have the mental capacity at the time of their assisted death. This will always be a particularly difficult area of judgement – especially when there is disagreement between the family, doctors, and a patient who has lost the ability to understand their situation, even if they have previously given written consent to a medically assisted death under the circumstances they are now in.

Unfortunately, stories like this get sensationalised too easily, although one of the articles does also report a finding that “In 98 percent of the cases the strict rules had been properly applied.” We should not lose sight of the fact that virtually all doctors are trusted, well-meaning, and act in what they believe to be their patient’s best interests. The law is there to deal with the very rare exceptions, like Harold Shipman. The risk of an errant doctor exists whether or not doctors are legally allowed to help someone to die. Whatever laws a country has, the medical authorities need procedures and cross-checks to ensure that safety procedures are both adequate, and followed in practice. A few instances of cases where procedures may not have been followed correctly in difficult cases, but which are being investigated, leading to possible process improvements, demonstrates a working law, not a failing one.

MDMD campaigns for a law that is restricted to those who have mental capacity to make a life ending decision at the time of their assisted death. Under these outline proposals dementia sufferers would need to be aware that they will eventually lose mental capacity. If they do not wish to let their illness progress this far, they should be allowed medical assistance to end their life beforehand, while they still clearly have sufficient mental capacity, but when there is a high probability that this will be lost before long. This is exactly the case in Switzerland – and is the situation Alex Pandolfo finds himself in (see his Mail on Sunday interview, and a recent follow up interview by MDMD). It avoids some of the difficult scenarios faced by Dutch doctors.

Euthanasia was legalised in the Netherlands in 2002. In 2017 4.4% of deaths were by euthanasia. In 2016 the Journal of Pain and Symptom Management reports that the Netherlands has one of the leading palliative care systems in the EU. The combination of leading palliative care and legalised medical assistance to die gives Dutch citizens a much higher probability of having the “good death” they choose, than those dying in the UK. Here, although we have good palliative care, requests for medically assisted deaths currently have to be denied. This leaves people like Omid, Joan Cheatle, and many others for whom even the best palliative care is not sufficient, to suffer for much longer than they would choose. How many exactly? There are no clear statistics, but judging from the choices Dutch people are making, perhaps around 4% or 5% (1 in 20 to 25) – a small but significant minority.

Update 12/9/2019: Refering to one of the cases that prompted this piece the BBC report that “A doctor accused of failing to verify consent before performing euthanasia on a dementia patient has been cleared of any wrongdoing by a Dutch court. … Judges said the doctor acted lawfully as not carrying out the process would have undermined the patient’s wish.” The article goes on to discuss some of the implications of this ruling regarding patients who have lost mental capacity.

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