Dementia and Alzheimer’s still increasing as leading cause of death

The Office of National Statistics has recently published data on cause of death in 2017. For the third year running Dementia and Alzheimer’s is the leading cause of death, and the trend is increasing. We have been monitoring this significant trend since it was first reported in 2016. See our previous reports on the 2016 and 2015 data.

The first summary point of the report on the 2017 report states:

“Deaths due to dementia and Alzheimer disease increased again in 2017 and it remained the leading cause of death in England and Wales, accounting for 12.7% of all deaths registered.” (This compares with 12% in 2016 and 11.6% in 2015)

The report breaks the data down by gender: “Dementia and Alzheimer disease remained the leading cause of death for females in 2017, accounting for 16.5% of all female deaths, an increase from 15.6% in 2016.” For men the leading cause of death is ischaemic heart diseases, accounting for 13.7% of male deaths.

For the over ‘80s Dementia and Alzheimer disease remained the leading cause of death for both men and women. For men it was responsible for 15.1% of deaths aged 80 years and over, (up from 14.3% in 2016 and 13.7% is 2015). For women it was responsible for 23.2% of deaths over 80. (up from 22.2% in 2016 and 21.2% in 2015)

The annual ONS report groups causes of death according to a classification system developed by the World Health Organization (WHO), modified for use in England and Wales. The report explains that “at the broad disease group level, cancer remained the most common cause of death in 2017 (28.1% of all deaths registered), followed by circulatory diseases, such as heart diseases and strokes (25.0%).” However this latest report gives a greater level of detail in its analysis, separating out various different cancers for example

The report identifies several reasons why the statistics are showing a marked increase in deaths due to dementia and Alzheimer disease:

  • People are living longer and surviving other illnesses. Dementia and Alzheimer disease mainly affects people aged over 65 years.
  • Male life expectancy has been increasing faster than women’s. This is thought to contribute to the increase in death due to Dementia and Alzheimer disease in 2017
  • Better understanding is likely to have led to increased levels of diagnosis and a higher incidence of identifying Dementia and Alzheimer disease as the primary cause of death on death certificates.
  • The way in which cause of death was coded was changed in 2011 and 2014. This increased the number of deaths attributed to dementia.

MDMD’s coordinator Phil Cheatle says: “This continuing trend highlights the increasing importance of dementia and Alzheimer disease, especially for the elderly. It reinforces MDMD’s position that assisted dying legislation needs to give the option of an assisted death to people suffering from these terminal diseases. We believe that this can only be done safely while the person still has the mental capacity to make a life ending decision. This applies to people in the earlier stages of dementia and is the criterion used for dementia sufferers who seek a medically assisted death in Switzerland, like MDMD campaigner Alex Pandolfo. Unfortunately a law restricted to those with a life expectancy of six months or less would not help dementia and Alzheimer sufferers as by the time they reach this point, (which is impossible to accurately predict), they will not have sufficient mental capacity.”

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Video Evidence helps in Rational Suicide Inquest

The BBC reported the inquest into the death of Beryl Taylor(70) who died in Rattlesden, Suffolk, in July 2016. The case is also reported in more detail in the East Anglian Daily Times.

Mrs Taylor’s husband had been arrested on suspicion of assisted suicide, and later murder. He was subsequently released. The coroner made a legal conclusion of suicide and that she had made the decision of her own free will.

The court heard that after police investigation and consideration by the Crown Prosecution Service, it was decided it would not be in the public interest to proceed further. This appears to be in line with the Director of Public Prosecutions guidelines on assisted suicide. It is not clear why the possible murder charge was considered and later dropped. The DPP guidelines apply to assisted suicide but not to the even more serious offence of murder.

The case is interesting as the couple clearly researched and discussed the situation carefully before Mrs Taylor took her life and even agreed to take the unusual step of making a video recording of a statement by Mrs Taylor, and her suicide.  Mr Taylor cooperated fully with the police, having anticipated their investigation. This behaviour, accompanied by the video evidence, no doubt helped the police immensely in their investigation, and perhaps helped ensure that charges were not pressed.

Detective Sergeant Michael Gwyn told the court that when police officers arrived at the Taylor’s house they were given a ‘do not resuscitate’ notice by Mr Taylor.

“He described the incident had been recorded on camera and provided police with the camera,” DS Gwyn went on to say 
“Because of the evidence that was seen on the camera, Mr Taylor made it clear he knew his wife intended to take her life and had to some extent facilitated that.”

It is interesting that DS Gwyn told the court that “… on reviewing the camera evidence he was arrested on suspicion of murder”, yet this charge was later dropped.

The inquest heard Mrs Taylor had read a statement to the camera before taking her own life. Assistant coroner, Kevin McCarthy said: “It makes clear to me that she has reached the decision to end her life and because of her disabilities, which were quite profound, … This is a woman who has reached the state in her existence where her quality of life is non-existent and she had decided life was not worth living.”

The court was told Mrs Taylor suffered from a range of medical conditions including fibromyalgia, allergies, chronic fatigue syndrome and multiple chemical sensitivities. None of these are terminal illnesses so we can be confident that her life expectancy was longer than 6 months. This means that she would not have been helped by the type of law proposed by Rob Marris in 2015, and argued for in the Noel Conway case. (Should such a law eventually be passed in the UK, it would however be a very welcome first step.)

The case seems to show that it was a combination of incurable medical conditions which reduced Mrs Taylor’s quality of life below the level she could accept. The NHS website says “although there’s currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.” However, when coupled with other conditions, Mrs Taylor found her condition impossible to live with.

My Death, My Decision coordinator Phil Cheatle said:

“This is a tragedy which shows how some deaths are extremely bad, not only for the dying person, but for those they leave behind. Losing a wife is bad enough in itself, but going through a police investigation and risking a lengthy jail sentence is intolerably cruel for a grieving partner.”

Mrs Taylor clearly felt as though she had no other option than to end her life. She did so in the knowledge that her decision could result in her loving husband serving a prison sentence. Her decision raises a number of unanswered questions: Would Mrs Taylor have delayed her death if a medically assisted option existed? Would an open-minded counselling session have dissuaded Mrs Taylor from ending her life? Would better care, (despite her husband’s best efforts), have made her condition tolerable.

In Mrs Taylor’s case these questions will remain unanswered. The primary witness is now dead. The opportunity has been lost. Doctors currently fear any conversation about assisted dying may open criminal liability, thus counselling is not currently a realistic option. Nor, as a recent report found, are doctors given sufficient training to confidently engage in difficult conversations about death.

Our current system is demonstrably unsafe and lacks sufficient compassion. This case echoes concerns expressed about other cases where people have ended their lives themselves or with the help of others, cases like pharmacist Bipin Desai, Ian Gordon and Sir Nicholas Wall for example. The law needs to change to prevent more tragedies like these.

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The Omid T Judicial Review: “Bound to be Dismissed”?

MDMD’s Campaigns and Communication Manager, Keiron McCabe, breaks down the judgement behind Omid’s defeat.

On Tuesday 2nd October 2018, Omid T’s assisted dying case , known as R (on the Application of T) v Ministry of Justice [2018] EWHC 2615 (Admin), lost at its first hurdle in the High Court.

In order to challenge the UK’s prohibition of assisted suicide, it was necessary for Omid to bring a judicial review. This is the process in which the courts appraise the validity of a law based on a number of strict criteria, one example being a disproportionate infringement of the Human Rights Act 1998. Omid’s legal team argued because terminal and incurably suffering patients cannot access an assisted death, their rights to a private and family life were infringed and Section 2(1) of the Suicide Act 1961 must be declared incompatible with Omid’s human rights. In some respects this meant that Omid’s case was similar to Tony Nicklinson’s 2012 case , though different from Noel Conway’s current appeal which only focuses on the rights of terminally ill patients.

However, prior to its ruling, Omid’s case had acquired a considerable interest from the legal community because of its unique evidenced-based approach. Usually judicial reviews do not deal in evidence. It is assumed a review is merely on a matter of law as the facts are agreed in advance. Indeed the UK’s civil procedure rules, the rules which guide conduct in the courts, make no mention of evidentiary rules such as cross-examining witnesses for judicial review – it is a rarity, granted only at the discretion of the courts.

Omid’s case garnered such an intense interest precisely because it was attempting to argue that the UK’s law infringed human rights based on evidence. In doing so, Paul Bowen QC, Omid’s lawyer, was seeking to emulate the Canadian case “Carter v Canada”, which legalised assisted dying when the Supreme Court of Canada found as a matter of fact:

“no evidence from permissive regimes that people with disabilities are at heightened risk of accessing physician-assisted dying;”

“no evidence of inordinate impact on socially vulnerable populations in permissive jurisdictions;”

“no compelling evidence that a permissive regime in Canada would result in a ‘practical slippery slope.’”

Considering the profound implications such an approach would have had on the right to die in the UK, the courts decided before commencing a full 3-4 week examination of the evidence, Omid had to prove that his case should be granted the rare discretion to cross-exam witnesses. However, it was agreed since the Court of Appeal may hear relevant issues whilst it was separately dealing with the Conway case, that the High Court would not pass judgement on the Omid case until afterward Conway.

“In my view, there is no moral or legal justification for drawing the line at terminal illness or 6 months or fewer to live. This would not have helped Debbie Purdy, Tony Nicklinson or me or many others who are begging for help to end our lives at a time of our choosing without pain in a dignified way.” – Omid T

Last Tuesday, Lord Justice Irwin, with whom Mr Justice Phillips agreed, ruled that Omid’s legal team did not have permission to cross examine the main witness, Baroness Finlay, and the case therefore could not progress to a full judicial review.

Omid’s ruling itself was somewhat complicated by the Conway case, as it was held that the evidence in the two cases “overlapped in great measure” . Indeed, Lord Justice Irwin went further and foundthat even though Conway’s case only focused on terminally ill patients, there was not a “material distinction” in the evidence between Conway and Omid’s appeals. This was because the evidence used for Omid’s appeal included information about jurisdictions in which assisted dying is only legal for those who are terminally ill and not both terminally ill/incurably suffering.

Additionally, Paul Bowen QC conceded, that following Conway, the evidenced-based approach of Omid could not succeed because the High Court would be “bound to find against [Omid]”.

However, even disregarding that concession, Lord Justice Irwin stated that he would have “reached the same conclusion in any event”.

Fundamentally, Lord Justice Irwin rejected the notion that a legal case on assisted dying could be assessed on the basis of factual evidence alone. He held that: “There exist facts bearing on the issue in question, and there are also a range of questions not reducible to hard fact, about which opinion must be formed and considered. The content of a study of impact of the legislation of euthanasia in the Netherlands is principally a question of fact. The methodology, rigour and accuracy of the conclusion of such a study is properly a question of expert opinion. The implications of such a study for the outcome of any english legislative change consequent on a declaration of incompatibly is not a ‘fact’, but a question of judgement about the future, and moreover is arguably a question beyond the special expertise of some (or perhaps all) of the instructed experts.”

He further stated that he did not have “any clear idea what…would be gained by oral evidence”, as opposed to second hand evidence such as published reports, and  concluded “…the factual foundations for the views of various experts are either already clear, or can be clarified…based on written material…Mere differences of opinion or judgement will be evident from the existing reports and should not be the subject of further exchanges”.

As a final matter, Omid’s lawyers argued that even if their evidenced-based approach was bound to fail, the terminal-incurable distinction between Omid and Conway’s cases meant that Omid faced a strong chance along a more traditional judicial review route. Hence they requested for Omid’s case to be “leapfrogged” to the Supreme Court. This would mean, that instead of having to appeal to the Court of Appeal and then to the Supreme Court, Omid’s case could have been heard directly by the most authoritative court in the UK. However, Lord Justice Irwin considered this request to be “premature” and decided that Omid’s legal team could not start asking for their case to progress before it had even been given judgement. Lord Justice Irwin offered a glimmer of hope by suggesting that if the team wanted to continue, he would “do what is possible to facilitate speedy hearings for any further applications”. However, this prospect is very unlikely given that Omid sadly ended his life(link to previous Omid ends life article) at the Swiss Lifecircle clinic 5 days before the court gave its judgement. Omid’s case is therefore without a claimant, and its future is unknown.

Lord Justice Irwin’s reluctance to grant Omid an evidenced based review, though disappointing, is understandable. The High Court is a relatively junior court in the UK judicial hierarchy and at the most senior level,  Assisted Dying has proven itself to be an issue of immense complexity for the Supreme Court. Hence it is understandable, faced with such a momentous decision, the High Court erred on the side of caution.

However, My Death, My Decision does not think the High Court reached the correct conclusion. In 2017, before she was recently appointed to the Supreme Court, Lady Arden,  delivered an excellent speech on the issues of patient autonomy and medical law. In that speech, Lady Arden recognised that sometimes, on issues of particular importance, the UK courts may have additional responsibilities in conducting a judicial review. She said when a topic is so important, as Assisted Dying is, that Parliament will likely look to the courts, for some assistance, the courts may be required to examine information “in greater detail than it would have done before … and [deliver] a special type of judgement”. Similarly, in a 2015 case , decided above the High Court in the Court of Appeal, Lord Justice Lewison said that if the “justice” of a special case required a fuller examination of evidence,  a court may permit the use of cross examination within judicial review.

Reflecting on these statements, it is clear that the ethical and moral implications of Assisted Dying mean it is a topic of special importance. Assuming that Parliament will turn to the courts for help, the justice of Assisted Dying must require our courts to conduct an investigation on fullest possible terms.  Cross examination is a necessary part of that greater investigation. Unlike carefully crafted statements, cross examination is a candid process. For example, an expert who presents evidence may be sensitive to avoid inconvenient or inconsistent information within a written statement. Yet, when an expert is asked to confront their own inconsistencies or to address moot issues which may undermine their argument, such problems cannot so easily be avoided.

Alternatively, those who support the Omid ruling could argue that a good lawyer should spot these inconsistencies anyway and could bring them to the attention of the court themselves. Yet, Lord Irwin rightly said this approach would not be good. A good lawyer will only ever be able to spot such problems due to advice from a different expert and judges already know such differences of opinion between experts. Additionally, judges are shrewd professionals and are well trained to listen skeptically to the arguments of good lawyers. However, they may be more willing to defer to the credentials of an expert. Cross examination is therefore an important tool to assess the strength of an experts evidence. Whilst lawyers may, to some extent, be capable of clarifying issues, they will never speak with the same authority as someone can about their own evidence.

My Death, My Decision believes any debate on Assisted Dying should be based on the fullest of evidence available. Whilst Omid’s case may be disappointing, it was not brought in vain. Omid highlighted the intellectual inconsistencies in advancing a right to die merely for those with a terminal illness. Moreover, if nothing else, the ambition of Omid’s approach may yet bear fruit, as if Conway moves to the Supreme Court and Lady Arden is sitting, a fresh opinion on the value of an evidenced based approach may yet still be possible.

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Exclusive Interview with Andi Reiss, Film Director, and personal friend of Omid

MDMD’s Campaigns and Communications Manager, Keiron McCabe, spoke exclusively with “Endgame” director Andi Reiss about Omid’s journey. Andi was present at Omid’s medically assisted suicide in Switzerland.

Photo: Omid and Andi, shortly before Omid’s death at Lifecircle Switzerland. Photo credit: Andi Reiss

How did you first become interested in the issues around Assisted Dying?

My mother died in 2010 whilst in the UK. Although she had been on a clinical trial and lived for over 19 additional good years, I eventually witnessed the indignity of her death first hand. That’s when I first started to think and examine the process of Assisted Dying in this country. It’s also why I wanted to direct a documentary examining these issues in more depth than anyone had done before.

And how did you find out about Omid’s case?

About two years ago I approached My Death, My Decision’s coordinator Phil Cheatle about the Endgame film and the issues surrounding Assisted Dying. Phil and everyone at MDMD were great and that’s how I first found out about Omid. I got to know Omid over the filming of Endgame. But it was more than that, I spent a lot of time with Omid and Omid wasn’t just someone I was following for a documentary, Omid was my friend.

I realise you were with Omid and spent some time with him when he went to Lifecircle for medically assisted Suicide. What was Omid’s mood and atmosphere when he decided to end his life?

It’s hard to emphasise enough, just how much anguish and pain Omid was in before he visited Lifecircle. I’ve known Omid for over two years now and words simply can’t describe it. It’s quite an extraordinary thing. No one can fully comprehend that the day you are going to die could be one of the best days of your life.

The mood at Lifecircle was joyous! I’d never seen Omid so excited, happy and calm. He looked incredibly relaxed and was very peaceful. It was extraordinary. It might be hard to understand, but when someone becomes incurably sick and life becomes totally hopeless, making that choice is empowering. Omid’s life had become at the behest of everyone. He couldn’t do anything for himself anymore. So knowing that you can lean over and switch the valve and go to sleep within one minute is pure empowerment.

Endgame is scheduled for a screening on Tuesday 9th October 2018 in Jersey. Further information can be found at: www.endgamemovie.uk

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Omid Ends his life at Lifecircle in Switzerland

Omid T: A Legacy of Bravery, Compassion and Empowerment

Photo: Omid and Dr Erika Preisig at Lifecircle, shortly before his medically assisted death. Photo Credit – Andi Reiss

I’m glad you’re here; thank you, thank you for everyone’s support – Omid (1964 – 2018)

On October 4th 2018, assisted dying campaigner, Omid T chose to end his life by a medically assisted suicide at Lifecircle near Basle, Switzerland. Although Omid was still awaiting the outcome of his landmark legal case, Omid’s suffering prevented him from waiting any longer. His death was reported in the Sun and the Daily Mail, among others. Omid’s lawyer has updated his CrowdJustice webpage accordingly. His lawyer Saimo Chahal said “I saw him shortly before he went to Switzerland and he told me that he could not bear living any longer and wanted nothing to get in the way of him having a peaceful and dignified death.” MDMD’s exclusive interview with documentary film maker Andi Reiss who was present when Omid ended his life is available here.

Unlike Noel Conway, who has launched a separate legal case to permit assisted dying for those terminally ill, Omid’s case sought to secure the right to a dignified death for all mentally competent adults, facing years of unbearable and incurable suffering.

Omid would not have benefited from Noel Conway’s appeal or the assisted dying bill put forward by Rob Marris in 2015. Living with Multiple Systems Atrophy (MSA) since 2014, Omid did not have six or fewer months left to live.

Over 18 months MSA increasingly robbed Omid of the dignity he deserved. First he lost his independence and then his motor functions. Omid’s life became increasingly intolerable for him and eventually he became virtually unable to move and had very limited ability to communicate. Yet Omid retained his mental capacity and was still able to persistently communicate his desire for a medically assisted death, something denied by UK law. Unfortunately palliative care was inadequate for Omid and his life became unbearable, despite being in a high quality care home. On a previous occasion he attempted and failed to end his life unaided. He needed medical assistance. The circumstances which Omid was forced to search for his peaceful end in Switzerland, is a tragedy. Although he was eventually able to obtain a medically assisted death abroad, it took a lot of time to arrange, and put his family through a lot of additional trauma – hardly the good death he wished for.

Debilitating medical conditions like Omid’s do not have to mean that someone cannot live a life they feel is worthwhile. It is up to the person themselves to form their own view. With the right support some can and do live fulfilling lives, despite the medical situations they have to endure. However this is not always possible. Omid is one clear example. It is not the medical condition alone which makes a life intolerable, it is in part also the way the individual is able to react to it. Some people, quite understandably, decide that for them their life is complete or cut short, and they wish to have a peaceful death rather than continue to suffer. Nobody, especially not those considered to be vulnerable, should be pressured or coerced into requesting an assisted death, but equally, nobody should be pressured or coerced into having to suffer against their will, nor be forced to continue to suffer by law, when that suffering is unacceptable to them, incurable, and they simply wish for a peaceful medically assisted death.

Without a change in the law to legalise assisted dying for people like Omid, the doctor patient relationship is badly broken at a time when it is most needed. Suffers like Omid deserve better. They need independent professionals to discuss their wish for an assisted death with; to ensure they have carefully considered every alternative; and, if no acceptable alternative is available, to provide medical help to die.

Omid’s legal case follows on from Debbie Purdy, Tony Nicklinson and others. In his summing up of the Nicklinson case, Lord Neuberger, then President of the Supreme Court said “There seems to me to be significantly more justification in assisting people to die if they have the prospect of living for many years a life that they regarded as valueless, miserable and often painful, than if they have only a few months left to live”.  This exactly sums up Omid’s situation. The UK medical, legal and political systems all failed him. We hope his efforts to change the UK system will eventually bear fruit.

MDMD offers sympathy to Omid’s family for their loss; gratitude to Omid for his efforts to challenge the law; and thanks, on Omid’s behalf, to his family and friends who showed the compassion necessary to help him end his life as peacefully as possible under very difficult circumstances.

The outcome of Omid’s case is expected soon. How the case will progress now depends on this ruling and on whether another person in a similar position is willing to carry the case forward. Omid’s lawyer would like to hear from anyone who might want to continue the case.

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