Personal Stories

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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Is “Mercy Killing” ever the right thing to do?

The BBC, and a number of newspapers, (see the Ayrshire Post), report the story of Ian Gordon who smothered his wife of 46 years with a pillow as “a final act of love” to relieve her pain and suffering. Did he do the right thing?

The judge’s explanation in sentencing, though interesting, doesn’t really help. The judge may well be doing his job to the best of his ability, implementing the law within the bounds he is permitted. But cases like this are complex and, (MDMD believe), indicate a failing in the law itself, rather than its application. The original charge of murder which Mr Gordon faced was reduced to culpable homicide, on the basis of diminished responsibility, at an earlier hearing.

The court heard that Mr Gordon’s wife did not want to be treated for her health problems because she was afraid of hospitals. Her family report her suffering excruciating pain immediately prior to her death. This is the first complexity – the possibility for treatment and pain relief, and even professional diagnosis was apparently refused. This was Mrs Gordon’s right, but it makes the situation harder for everyone else when it causes desperate actions, however well intentioned.

Did she actually ask to be killed? And if she did, was it her own, well considered and persistent wish, made when she had sufficient mental capacity? No verbal or written request is recorded, though apparently the couple had a “death pact” between themselves. There were, of course, no independent professional witnesses to this.

Had all alternative options been explored? For example, could increasing levels of pain relief have been given at her home, possibly including terminal sedation? To what extent might these have provided a good death, or at least a better death, for this unfortunate lady?

Mrs Gordon’s daughter explained that her mother had a history of suffering from anxiety and depression. To what extent did this exacerbate the situation? Was it resistant to all possible treatments?

In cases like this, without the possibility of legal medically assisted dying, these questions cannot be satisfactorily answered. In the most important sense, it is too late to ask after the person concerned – and primary witness – has been killed, or has taken their own life. It is only when a formal legal process for assisted dying is available,and someone has requested this, that proper investigations can be made before the death, and the secrecy and anguish of well-meaning but possibly misdirected illegal actions can be avoided.

MDMD Coordinator, Phil Cheatle, says, “I have been in a similar, very difficult situation to Mr Gordon, so I have every sympathy with him and his actions. On balance, I decided to refuse my mother’s requests to help end her life when I had a similar opportunity, but perhaps my mother’s suffering was not as great as Mrs Gordon’s. However, seeing my mother in pain, and her personality slowly disintegrating due to dementia, was dreadful, both for her and for those who knew the person she had been. We need a change in the law to prevent tragedies like this – whichever decision people like Mr Gordon, or me, take.”

What sort of assisted dying legislation would have avoided the Gordon’s tragedy and others like them? Fundamentally a law which respects a dying person’s well informed and well considered wishes, and which gives them some control over the timing of their death. However, for the protection of vulnerable people and the wider society, such a law needs to place strong requirements on the person seeking assistance to die. For someone to take advantage of such a law, they would have to agree to many examinations and consultations with multiple trained professionals. At the very least these professionals would need to ensure:

  • that the requestor was incurably and unacceptably suffering from a condition that was highly unlikely to improve;
  • that the requestor considered an assisted death to be the best option available for them, having carefully considered all other available options, and the likely future quality of life they could expect;
  • that the requestor had sufficient mental capacity to take a life-ending decision;
  • that the requestor’s decision was consistent over a period of time;
  • that the requestor had instigated the request themselves and had not been coerced into their decision.

It is not clear whether Mrs Gordon would have agreed to the process, or would have met conditions like these, had the option been available. This makes this case particularly difficult. It surely cannot be correct for others, (in particular those who are emotionally involved, and not medically qualified), to make a life ending choice on behalf of another, however well-intentioned and compassionate their motives. The only exception is in the situation of doctors making a best-interests decision to stop further treatment in cases they deem hopeless, or following a patient’s advance decision to refuse treatment. Our sympathy with the actions of Mr Gordon is precisely because there didn’t appear to be better alternatives available to him and his wife. With better alternatives, his actions would have been unacceptable.

An appropriate law would make the situation much clearer to those who wanted to do their best to help their loved ones to have a good death. If someone like Mrs Gordon had sought professional help – knowing that help to die would be available when needed… If she had put on record, many years before hand, her desire for the option of an assisted death if she ever reached a point in later life where she deemed it necessary… Then there would be no excuse for people to take drastic, illegal and dangerous action themselves, and as a result society, (and in particular, vulnerable people), would be safer.

Mr Gordon told his daughter “I don’t have a single regret.” His whole family and many character referees, appear to back his decision to kill his wife out of compassion. A law that makes people feel they have to take the law into their own hands to “do the right thing”, due to lack of appropriate legal choices, is fundamentally a bad law and needs to be changed. This failure of the current law to provide a more compassionate option, is made worse, in this case, by compounding the tragedy of the violent death of a much loved wife and mother, with another tragedy of a jail sentence imposed on a caring husband, driven to break the law due to lack of an acceptable alternative.

The case is not an isolated incident. For example, earlier this year a man who attempted to kill his wife to end her suffering was given a suspended manslaughter sentence. How many more cases of successful or attempted mercy killings, assisted suicides, and people taking their own life do we have to endure before we get more compassionate laws – throughout the UK? How many more tragic events like these go undetected, or under reported?

Update 19th March 2018:

Scottish Legal News reports that the custodial sentence of Ian Gordon has been quashed on appeal – leaving Mr Gordon with an admonition. The full ruling is here. It appears that the appeal court decided that the original  sentence was inappropriate as insufficient weight had been given to psychiatric reports on Mr Gordon which indicate that he “was suffering an abnormality of mind” which rendered him “unable by reason of mental disorder to appreciate the nature or wrongfulness of any conduct”. Good news for Mr Gordon and his family, but it further emphasises the need for a change in the law to avoid these dreadful, unsafe situations in the first place. We need to allow the option for a medically assisted death under carefully controlled circumstances, in order to remove the need for desperate actions by apparently compassionate, well-meaning, people who are “suffering an abnormality of mind” which leaves them “unable … to appreciate the nature or wrongfulness of any conduct”. Where are the safeguards in that? Where is the careful, objective, consideration from impartial experts – before the (possibly vulnerable) person has died?

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Should a right-to-die extend to those with psychiatric conditions?

The BBC report the suicide and background of Canadian Adam Maier-Clayton who took his life in April 2017, aged 27, following a history of psychiatric illness including a condition that left him in extreme pain. The video which forms part of the report shows Adam and his parents clearly explaining their point of view, together with some opposing opinions.

Adam’s illness was diagnosed as Somatic Symptom Disorder, “a psychiatric condition characterised by physical complaints that aren’t faked but can’t always be traced to a known medical illness”. Adam experienced “crippling physical pain throughout his body” which he described as like being “burned with acid”.

Adam believed his condition to be incurable, following years of trying different treatments. He wanted to have a medically assisted death, but although right-to-die legislation was introduced in Canada in 2016, this only covers cases where death is “reasonably foreseeable”, so excludes people like Adam’s.

A young person taking their own life, perhaps especially when done so for psychiatric reasons, seems far more tragic to most of us than when someone chooses a medically assisted death after living a reasonably long life, which they now feel is complete, due to worsening and incurable physical illness. One of the difficulties, with cases such as Adam, is that it is unclear whether the patient will recover. A younger person can generally be expected to live longer to “see what happens”. Doctors naturally want to play safe, pursuing all possibilities of the patient returning to an acceptable quality of life. That is the argument given by critics of Adam’s choice in the BBC article. However what the article fails to clarify is what the evidence is.

We hear much of “evidence-based medicine”, but where is the evidence in cases such as this? For example:

What proportion of people with similar conditions to Adam eventually regain an acceptable quality of life (either by recovering or by learning to cope with their symptoms)?

How long, on average, does it take for them to regain acceptable quality of life? What are the longest and shortest periods one could reasonably expect?

How bad can the symptoms of people in similar situations get? For example, might Adam, had he decided to stay alive longer in the hope that his condition would improve, run the risk of losing the mental or physical ability to end his life if he later decided that his life was intolerable? … or might he run the risk of being sectioned, “for his own protection”, such that he lost his freedom to take his life if he wished? …and if so, for how long?

If psychiatry is unable to give honest and informed answers to questions like these, “evidence-based medicine” is impossible. Doctors presumably should then admit that they don’t know, and should accept that their opinions are little better than those of the patient and his family.  This is particularly important in cases like Adam’s which have proven themselves resistant to all treatments which might have helped. Surgeons and physicians generally accept the decisions of patients who decide against very demanding or unpleasant treatments, particularly if the chance of improvement is low or the extra life expectancy would be small. In a similar way we need to appreciate the limits of what psychiatry is able to achieve, despite is best efforts, and the incurable suffering some patients have to endure as a consequence.

If, on the other hand, the questions above can be answered to some extent, then the patient, with the help of their doctors, has the potential of reaching an informed and carefully considered choice. They can weigh up the chances of returning to an acceptable life, against the experienced pain and difficulty of the current and anticipated condition and the risk that they may never recover. Not an easy decision for anyone. Something that needs time and careful discussion with all involved. What is striking in Adam’s case is that both his parents seem strongly supportive of his decision and believe he should have had the option of a medically assisted death. This suggests that Adam’s decision was based on careful weighing up of the best available evidence.

Some may not agree with Adam’s decision. But in what way do they, as bystanders who don’t have to experience Adam’s condition, have a right to insist that he suffers in a way he finds intolerable for some indeterminate (and presumably long) period of time – possibly for the rest of his life? Does Adam’s situation differ significantly from Omid’s in this respect? (Omid suffers from an incurable physical condition that is not terminal, but reduces his quality of life permanently below the level he can accept.)

Medically assisted suicide is obviously a very last resort, particularly in psychiatric illness. This is reflected in Belgium and Holland where although it is legal, a very small proportion of the total assisted deaths occur in psychiatric cases. However, allowing patients the chance to at least discuss a medically assisted death as one of their options quite often means that they decide not to take it up or postpone it and perhaps try different treatments. The alternative to not being able to discuss it as a possible option can be some extremely distressing and sometimes botched DIY suicides that are much more traumatic for the patient and distressing for the family, than an assisted death.

Further discussion on assisted dying in psychiatric cases can be found in our article regarding depression (particularly the final sections). An interesting discussion of mental illness and assisted dying by a Canadian bio-ethicist is available here. An academic book of papers, mostly by (US) psychiatrists dealing with rational suicide in the elderly is reviewed in detail here. Although it focuses on the elderly, many of the issues are relevant to cases like this, particularly those relating to what steps should be taken by psychiatrists to prevent someone ending their life.

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MDMD Founder Dr Michael Irwin Discusses His End-of-life Plans

The Sunday Times today published an article on the end of life plans of MDMD founder Dr Michael Irwin. (The organisation he founded was the Society for Old Age Rational Suicide, SOARS, which democratically chose to change its name to My Death, My Decision in 2016.)

In the article Dr Irwin explains how, when he feels he is ready, he wants his doctors to be able to give him increasing levels of sedation, in order to ease any pain and suffering. He wishes to enter “continuous deep sedation” which, coupled with his refusal of artificial feeding and hydration, will result in his hastened death. He believes this approach is legal in this country under the doctrine of “double effect”. MDMD discuss this approach in more detail here. The story has been echoed in other papers including the Daily Mail which has free online access.

A survey conducted for the Sunday Times by YouGov found that 67%, of the 1,650 people asked, “think doctors should be allowed to give terminally ill patients enough pain medication to hasten their death”. Unfortunately it is not clear from the article how dependent this finding is on “terminal illness”, nor what the respondents understood by this phrase. (For example, is “terminal illness” taken to include dementia, now the leading cause of death in England and Wales?) The article does say that the percentage rose to 74% when considering responses of the over 65 age group – those more likely to have had first hand experience of the dying process of their parent’s generation, and hence be aware of how unpleasant and prolonged the dying process can be.

Dr Irwin is consulting with the GMC on precisely what doctors may be able to do within the law, and calls for an open discussion of the issue. He says “it is necessary to be honest and generally to regard it as ‘slow euthanasia’ carried out under the doctrine of ‘double effect'”. The GMC has responded saying that doctors would need to seek advice from clinical and legal experts. Surely both doctors and patients need clarification of this issue, given that almost 75% of people close to the age where they may face this situation think this should be an available option. MDMD will watch this story with interest as it unfolds.

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A Good (Assisted) Death in Canada

Canada legalised a limited form of assisted dying in 2016. A long article in the New York Times gives a detailed and inspiring account of John Shields who died by lethal injection in British Columbia. He suffered from an incurable condition, amyloidosis, which gave him increasing pain that he no longer wished to endure.

The article contains a video, (about two thirds of the way through), of a goodbye party which Mr Shields held for his friends and family. There is much laughter and emotion. Mr Shields seemed totally at ease with the fact that he would soon be dead.

Among many interesting aspects to the story is the fact that Mr Shields had been a Catholic priest at one stage in his life. Another is that in Canada, patients who are accepted for medical assistance to die have the choice between either taking a lethal medication themselves (assisted suicide), or for a doctor to give them a lethal injection, (euthanasia). Most patients prefer the latter. However, this puts additional responsibility on the doctor and some doctors find themselves unable to help their patients in this way. Dr Stefanie Green, who ended Mr Shields life by lethal injection, makes a significant contribution by explaining her reasoning, and why she doesn’t believe that offering lethal medication goes against medical training. The article quotes her saying “I think people go into medicine because they want to help people. … This is on the continuum of care of helping people.”

MDMD hopes that the example set by Mr Shields and Dr Green will inspire others to see how someone can have a dignified death in a safe and compassionate manner – what for them is a “good death“. Why should people in the UK be denied a death like this, if that is their wish, when the alternatives are, for them, far less acceptable?

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Dementia sufferer plans to go to Lifecircle

The Mail on Sunday published a story about MDMD supporter Alex Pandolfo who suffers from Alzheimer’s and is planning to end his life at Lifecircle in Switzerland. It is a significant article as Alex is explaining his reasons before he ends his life. He mentions one of his difficulties as being the timing of when to end his life. He wants to live as long as possible, but not risk leaving it too late, when his mental capacity is lost.

My daily worry is that I won’t time it right and go when it’s too late.

The article is excellent so far as it goes, and has received many comments, almost universally supportive. However, it fails to go into sufficient detail to explain that dementia sufferers like Alex would not be helped by the Bill rejected by parliament in 2015 as that was limited to those with a life expectancy of 6 months or less. By the time a dementia sufferer reaches this point it is highly unlikely that they will have the mental capacity to make a life ending decision. Dementia is now the leading cause of death in England and Wales according to data from the Office of National Statistics.

MDMD campaign for a law that will help people like Alex.

MDMD frequently gets requests from journalists for personal stories of people who want to have an assisted death. If you have a relevant story you would be prepared to talk to a journalist about please let us know. We can provide appropriate press contacts and can provide background and supplementary interviews to help ensure your story is reported correctly. These articles are very important to publicise and build support for our campaign. If you agree with our aims, please consider helping us in this way.

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Suspended sentence for failed mercy killer

The BBC and the Guardian report the particularly tragic story of 95 year old Denver Beddows who admitted battering his 88-year-old wife Olive with a pan and a hammer at their home in Warrington. Mrs Beddows survived the attempted murder. Mr Beddows received a two year suspended sentence.

Apparently Mrs Beddows had pleaded with her husband to end her life so that she would not die in a care home. This is given credibility by the fact that Mrs Beddows has now forgiven her husband and wished to be reunited with him.

The story is complicated by the fact that according to psychiatric reports Mr Beddows had a history of depression dating back to 1962 and was “clearly under a great degree of mental strain and was not thinking straight”.

Without a compassionate right-to-die law, it is hard to see how tragedies like this can be avoided. With an appropriate law, Mrs Beddows would be able to formally request medical assistance to die. Before being granted, the request would be assessed by multiple independent professionals who would evaluate, amongst other things:

  • Did Mrs Beddow have the mental capacity to make a life ending decision?
  • The medical situation leading to Mrs Beddows request – presumably an 88 year-old, in need of a care home had a serious illness. What were the prospects of a recovery that Mrs Beddows would find meaningful?
  • Whether Mrs Beddows was being coerced into making her request. Was there evidence of a long held view that she would want an assisted death if she was so ill as to require permanently living in a care home – something that she foresaw that she would find intolerable. In its best form such a view would be documented in a signed and witnessed advance statement. This would help doctors and others assessing the case to be confident that it was her own choice. MDMD advocate such advance statements to be made at the same time as an Advance Decision.
  • Whether all other possible solutions have been properly examined.
  • Was she suffering from a curable depression?
  • Might she adapt, given time, to a changed situation following some life-changing change in circumstances.

If, following careful evaluation by multiple independent professionals, the conclusion was that her wish to end her life was safe and persistent, then with appropriate medical assistance, she could have the good death she wished for. If the request was found to be unsafe and rejected it would not be defensible for someone to attempt murder or assist suicide – so vulnerable people would be better protected than at present.

For some people, even the best nursing or palliative care is not the type of end of life they want. Instead of fighting on against inevitably worsening illness, they would prefer to peacefully go to sleep and not wake up, often in their own home, possibly in the company of those closest to them. Why should they be denied this rational choice?

In the absence of an appropriate right-to-die law, cases like this will persist. Untrained, emotionally involved people will take the law into their own hands. They will try to assist in suicide, or even attempt murder. It may go horribly wrong, as in this case. It could be very traumatic. The person may not die but be left with serious injuries. Worse, once the life has been ended there is no way of knowing whether the action really was at the deceased’s request. Where are the safeguards in that? Yet that is what parliament decided was a “safer” option than really tackling the issue of what right-to-die legislation this country should have. The result: people who would like an assisted death have to continue to suffer, against their will, and be denied the good death they seek. And in addition, people, like Olive Beddows, have to beg apparently well-meaning people to assist suicide or murder. They risk themselves ending up in a worse situation. The person assisting them will be subjected to, at best, a police interrogation, and at worst, criminal charges and a custodial sentence. The parallel with backstreet abortions before abortion was legalised is chilling.

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MS Sufferer heading to Switzerland while he still can

The Scottish Sun reports the case of Colin Campbell.

Colin suffers from the Primary Progressive form of MS. He intends to go to Lifecircle in Basle to end his life on 15th June while he still can. He told MDMD “I qualify everything I say with ‘intend’ as my health could fail totally at any time.” He has lived with the gradually worsening condition since 1995, but his quality of life is now deteriorating below the limit he can tolerate, and he needs to take action now, while he is still physically able to.

Colin has bravely chosen to make his decision public in advance, to help demonstrate why a change in the law is necessary. Why should people like him have to go to Switzerland to find compassionate doctors who are legally able to help him have the good death he wishes? We need to provide this in the UK, for mentally competent adults who have made their own, settled choice in the face of incurable, unacceptably low quality of life.

Cameras will record Colin on his journey. Andi Reiss is the independent documentary film maker who is following Colin’s case as part of a larger project looking in detail at the issues around assisted dying.

Colin has told MDMD that his doctors have not discussed his life expectancy with him. The Multiple Sclerosis Trust clearly points out that MS is not a terminal illness. There appears to be no prognosis of six months or less. Given this, it is interesting that Ally Thomson, director for Dignity in Dying Scotland is quoted in the Scottish Sun article as saying “It is a tragic and unacceptable reality that seriously ill people like Colin Campbell feel they have no other choice but to spend their final days traveling hundreds of miles to Switzerland in order to have the dignified death they desire.” MDMD fully agree with her on this. Unfortunately she doesn’t go on to say what option she would like to see for people like Colin. The legislation Dignity in Dying have been proposing would not help him, as his life expectancy is not less than 6 months.  Perhaps this case will help Dignity in Dying see the need to broaden their policy to show more compassion to people like Colin (and Omid), instead of denying them the help they need and thereby prolonging their suffering unacceptably. MDMD certainly hopes so.

MDMD commend Colin for his bravery in being so public at this difficult time. We respect his choice and wish him well in the course he is choosing.

Update October 2017: Colin deferred his decision to end his life in Switzerland. See the story here.

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Senior judge ends his life after being diagnosed with dementia

Several news sources report the suicide of Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge. The Daily Mail has some particularly interesting quotes.

Daily Mail

The Guardian

Daily Telegraph

BBC

MDMD are not aware of the full circumstances of Sir Nicholas Wall’s death, but the case highlights the following issues:

  • Faced with an illness that permanently reduces one’s quality of life below the level one can accept, a decision to end one’s life is a rational and understandable choice for some people.
  • If the law were changed to provide legal medically assisted suicide, then people like Sir Nicholas would be likely to seek professional support, in the knowledge that a legal medically assisted suicide would be available when necessary. Evidence from countries where this is available demonstrates that in some cases this can help people delay the point at which they chose to end their lives.
  • Dementia, and other conditions which can be intolerable for well over 6 months, highlight the problematic limitations of legalising assisted suicide only for those with a life expectancy of 6 months or less.
  • This is particularly poignant for dementia, as by the time a sufferer has a life expectancy of 6 months or less, they are unlikely to have sufficient mental capacity to safely permit a medically assisted suicide.
  • Dementia is an increasing concern for many people. It is now the most common cause of death in England and Wales.
  • Without a change in the law permitting medically assisted suicide, some people feel forced to take action to end their life themselves. Without controlled legal access to appropriate lethal drugs, alternative methods of suicide are uncertain and prone to failure, possibly leaving the person in a worse state. Some methods are very unpleasant and traumatic for both the person involved and their families.

We need a more compassionate law that allows people like Sir Nicholas Wall to have a good death at a time of their choosing, with appropriate counselling, assistance and company.

UPDATE 7th June 2017

The inquest into Sir Nicholas Wall’s suicide is reported in a piece in the Guardian. He died by hanging in his care home, leaving letters to his wife. The piece does not say whether he was considered to have lost mental capacity, but his actions, letters and planning suggest that his decision was rational. The coroner who examined the note he left said it was clear that he intended to take his own life. Similarly it is unclear whether he had been diagnosed as suffering from a potentially curable depression, as opposed to understandable sadness due to his incurable illness, which for him was intolerable. His nurse, the last person who saw him alive, described how he joked and smiled during her visit. We can reasonably speculate that this is not the behaviour of someone acting out of severe depression.

How much better his death could have been with appropriate legalised assisted dying. He could have had professional counselling – possibly delaying his choice to end his life; he needn’t have died alone; he could have explained to his family, saving them the shock and unpleasantness of a violent suicide …

The tragedy of this case is that Sir Nicholas was not allowed the compassion and medical assistance which would have enabled him to have a good death at the time of his choosing.

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