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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Living with Dementia – comparing two cases of Early Onset Dementia

The Observer recently published a story about Wendy Mitchell, an Alzheimer’s sufferer whose memoir, ‘Somebody I Used to Know’, has recently been published. The article gives in interesting insight into how Wendy copes with the devastating diagnosis of dementia at the age of 58. Wendy is described as an energetic single mother of two adult daughters who had worked as an NHS administrator.

The Observer story has some interesting parallels with the case of Alex Pandolfo who received his Alzheimer’s diagnosis when he was 61. Like Wendy, Alex was a capable, strong-willed professional, firmly in control of his own life and very unwilling to give up easily. Alex’s story, published in the Mail on Sunday in May 2017, was remarkable as he explained his decision to seek an assisted suicide in Switzerland rather than endure the final stages of dementia. Wendy, at least in the published article, does not appear to go that far in her thinking, but the article does say that “She hopes that death will come before she is dismantled by the illness, or that the law will be changed so she will be able to choose her time of leaving”. Both Wendy and Alex share a common desire for a self-determined, peaceful death, rather than having to live through the inevitable disintegration of their personality that they know the final stages of their disease will bring. Their desire is echoed, by the fictional lead character with early-onset dementia in the film Still Alice, considered to be “shockingly accurate” by fellow sufferers.

Dementia is now the leading cause of death in England and Wales. Although most cases are detected at a much older age than Wendy and Alex, 5% of dementia sufferers have early-onset dementia, and there are fears that this is an under-estimate of the true incidence.

Following the article about Wendy, I talked again to Alex Pandolfo to see how his story is unfolding, and to look for parallels between his experience and Wendy’s.

A new sense of purpose

Wendy describes how she has managed to keep a positive approach to living with dementia through finding a new sense of purpose in publicising what dementia is like – her book is just one example of this which “has become her life’s work for as long as she is able to do it.” Alex has found similar outlets. No longer able to supervise university research, he devoted more time to his role as advocate for disadvantaged young people. As his condition worsened he had to stop this and is now concentrating on right-to-die campaigning – fighting for the right for people to have a medically assisted death, if that is their wish, and if their incurable illness causes them an unacceptably low quality of life – without having to travel to Switzerland, as Alex intends. He was advised to do something that he didn’t do before. “It’s important to keep my brain active and engaged” Alex says, “It gives my Alzheimer’s some value.” I’m not sure that right-to-die campaigning was quite what the professional who offered that advice had in mind, but it seems to serve the purpose.

Humour is important to both Wendy and Alex. Wendy finds it through contact with people in a similar situation to herself. This hasn’t worked for Alex. Instead he tells his friends “If you feel like taking the piss, take it” – a Mancunian who is proud of his abrasive northern wit.

I explored with Alex how things had changed since his Mail on Sunday article eight months ago. His view, that he wants to end his life in Switzerland before he is unable to live independently, has not changed, but he did admit to a “wobble” as he recovered from a minor stroke a few weeks ago. Fortunately, his previous mental capability has largely returned, but he describes his symptoms as having gone from “mild” to “moderate”. He notices his sense of time diminishing. He has to rely much more on alarms – something he never had to do. On the plus side, long train journeys can disappear in a flash.

I’m becoming the very antithesis of who I was.

Another change is more concerning. “I find myself getting angry so quickly. Something that I would have found innocuous now irritates me much sooner. I feel anger now like I’ve never felt in my life. That worries me.” Alex is so concerned by this development that he says this may make him take his trip to Switzerland sooner. He doesn’t want to end his life as an angry, possibly violent person. It wouldn’t be “him”.

Soon after his article was published last year Alex got the “green light” for his assisted death in Switzerland. (This means that the preliminary medical investigations have been carried out and the Swiss doctor has indicated that Alex’s conditions meet the criteria set by the legal and medical rules in Switzerland. Unlike the Bill rejected by the House of Commons in 2015, assisted suicide in Switzerland is not restricted to those who are terminally ill. Alex is free to arrange a date for his assisted suicide there when he likes – though additional checks at that time will confirm that he still retains sufficient mental capacity to freely decide to end his life.) How did he receive the news that he had the green light? “I can’t tell you how liberated I felt. Elated.” People told him he was looking better, healthier, and that he was presenting himself in a more positive way. “It really improved my feeling of quality of life.”

My independence is crucially important to me.

In the Mail on Sunday article about Alex, Dr Peter Saunders from the campaign group Care Not Killing, which opposes a change in the law on assisted dying, was quoted as saying “The best way to help dementia patients is to give them the best possible care.” Why does Alex think this wouldn’t be appropriate for him? “I really believe my independence is crucially important to me”, though he agrees that this is a personal decision and that good care should be available to those that would prefer it. He went on to describe in detail how his father suffered from a related illness. “I cared for my Dad with dementia, for five years. He was a strong man.” Alex explained how during his life his father had had to cope with both severe physical pain and many social difficulties. “He became incontinent. Every time he needed to be cleaned, tears ran down his face. No dignity. Whenever I showered him there were tears in his eyes. I did everything possible for him.” Alex was clearly emotional at the memory. We paused the conversation. “It was 13 years ago and I still get upset thinking about it”, Alex apologised. “I would not wish that on anybody, and I don’t want it for me. It is impossible to give good care to someone like that.”

Alex was full of praise for the attitudes of the healthcare professionals who have been treating him, despite them being unable to help him with his desire for a medically assisted death. “My GP has been 100% great.” After requesting a DNR and completing an Advance Decision, Alex mentioned his desire for an assisted death in Switzerland. “You do realise that I’m not permitted to discuss this, but I genuinely and honestly believe you should have the choice.” His GP told him.

When he was admitted to hospital, Alex was open with nurses, junior doctors and consultants about his plans for a good death in Switzerland. Everyone seemed to respect and understand his position. “I probably shouldn’t be saying this, but I totally agree with what you are saying” he was told by one of the professionals. It is surely unacceptable that our healthcare professionals are left afraid to discuss a patient’s end of life wishes with them if they involve, or may involve, an assisted death. Why no “patient-centred” care at this point? What damage might this be doing to the doctor-patient relationship, at a critical time in a patient’s life – even if the only medically-assisted options available are in Switzerland?

What is Alex finding more difficult to cope with now? “I’m becoming insular. I feel safe inside my house and am becoming uncertain about going out of the front door.” A keen Manchester City supporter – “This is probably my last season going to matches. The excitement just isn’t there anymore for me.”

Still happy? “Not as happy as I have been. I’m dwindling on a whole range of fronts.” But there’s still an optimism in his voice – “I’ve always been a problem solver – a do-er”.

After our conversation I’m left wondering if, and when, Alex will make use of his green light. Perhaps another unpredictable stroke will prevent him making the journey? – or his increasing fear of venturing outside will make the prospect too traumatic?

The words don’t come.

Alex is still very articulate in his speech, though his writing is more limited, and he complains of being less articulate than he was. “The words don’t come”, he complains. Wendy had assistance from a journalist in writing her book. Both seem to be impressive personalities, facing dementia with a positive attitude for as long as they can, determined to make a difference, right to the end… until the words don’t come anymore. But they don’t want to suffer the last bit… and if that is their choice, why should society make them?

Phil Cheatle

30th January 2018

Update March 2019:

Film maker Mark Scullion made a short film about Alex’s experience living with dementia. This sensitive film gives an insight into Alex’s personality and the difficulties of his condition. The film won the Royal Television Society Awards for Factual film 2019

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Lady Lucan Coronor’s Suicide Verdict – Fear of Parkinson’s Disease

The Telegraph reports that the coroner investigating the death of Lady Lucan in September 2017 recorded a verdict of suicide. Lady Lucan is reported to have “self-diagnosed” as having Parkinson’s disease, and to have previously discussed assisted suicide with a friend, should they develop a terminal illness or a degenerative disease. There was no suggestion that her suicide was “assisted”, as she died alone by taking “a cocktail of drink and drugs”.

This is another tragic end of life, lonely, probably too soon, and without proper medical discussion and professional support. It results from the lack of an open, legal and medically assisted suicide process in the UK. This case reaches the news as it concerns a high profile figure, like that of Sir Nicholas Wall. We don’t know how many more similar cases there are within the wider population. Research suggests that over 7% of suicides are by people who are in the narrower category of “terminally ill”. Neither Lady Lucan nor Sir Nicholas Wall would fall into that category so the true percentage must be considerably higher.

MDMD sympathises with those, like Lady Lucan, who, after careful consideration, and in the face of incurable illness, feel that their life is complete, and that taking their own life is their best option. But, unlike those who rejected a change in the law, we do not consider taking one’s own life, without professional consultation and assistance, to be acceptable. We campaign for a better law. The various approaches people like Lady Lucan may consider all have serious disadvantages. With appropriate assisted dying legislation, in conjunction with good elderly and palliative care, Lady Lucan might have lived for much longer, in the comfort of knowing that if things got truly unbearable, or she was close to loosing her mental capacity, she could request medical assistance to die. Our challenge, as a country, is to bring about such legislation – broad enough to help people reaching the end of their life, like Lady Lucan, have the good death they desire, but safe enough to prevent abuse.

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