PRESS RELEASE: A New Documentary Has Explored the Realities of Oregon’s Assisted Dying Model

On Sunday, BBC 2 aired the second installment of Louis Theroux’s new documentary series Altered States. “Choosing Death” followed the journeys of Gus, Lorri and Debra, as they grappled with a choice to end their lives.

Suffering from stage four pancreatic cancer, Gus was eligible to end his life under California’s 2016 End of Life Act. California’s law is modelled on the system and safeguards first established in Oregon in 1997.  Anyone seeking an assisted death must be over the age of 18, be of sound mind, have gained the consent of two doctors, waited for a period of 15 days after an initial oral request to die and be expected to die within 6 months or less. This approach is being made available in an increasing number of US states and will become available in Hawaii in January 2019. The film showed the difficulties faced by those dying, and their families. Deciding the time of death is particularly difficult, balancing the wishes of the dying person to avoid unwanted suffering for themselves and their family on the one hand, and the family’s wish to put off the loss of the dying person for as long as possible on the other. This is always going to be a difficult decision but much rather this (preferably with more independent professional support than was shown in the film), than have to suffer the final stages without the ability to bring it to an end when desired.

At one point viewers watched Gus as he broke down, saying his decision was a “burden on [his] loved ones because they [didn’t] want [him] to go”. “I feel like I’m letting [them] down, when I decide to take that option.” Admitting if he was completely selfishly he would have ended his life many months earlier than he did.

Gus and his family did agree a time for him to die by swallowing the prescribed medication. He died peacefully with his family, however the death took over 7 hours. In contrast, Lifecircle, a Swiss organisation which provides medical assistance to die, uses an an intravenous (IV) method controlled by the patient.

Dr Erika Preisig, President of Lifecircle, told MDMD that the time taken by the Lifecircle method is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all.” Dr Preisig, has assisted 386 people to end their life using this method. It appears to have clear advantages compared to the US method, but still allows the patient to take the final action themself, something required by Swiss law.

Viewers also saw Debra, a 65 year old wheelchair-bound widow, ineligible under Oregon’s law for an assisted death. Debra also suffered from dementia like symptoms – something she knew would lead to an intolerable decline for her. Following the death of her husband she had no close relatives. She sought advice from a group called Final Exit Network, FEN. Their two “guides” were compassionate and offered only advice (they did not provide equipment or physically help with Deborah’s death). With their guidance, Deborah chose to end her life.  

Following its broadcast the BBC 2 documentary sparked an online debate as to whether the UK should change its law. In 2015 Rob Marris MP, had introduced an Oregon style assisted dying bill into Parliament, but had failed to pass it during its first reading, losing 118-330 against.

Phil Cheatle, Coordinator of My Death, My Decision, a UK organisation which campaigns for a change in the law has said:

Yesterday’s documentary highlighted precisely why My Death, My Decision is campaigning for a more inclusive change in the law. Few won’t have sympathised with Debra’s story. Despite possessing a clear and settled wish to end her life and the capacity to make such a choice, the law did not allow her the help and support she needed to end her suffering. To respect someone’s dignity, to uphold their autonomy and to act compassionately, the law must allow assistance for those whose medical conditions give intolerable and incurable suffering regardless of their life-expectancy.”

“It is up to society to provide as much help as possible, but up to the person themselves to form their own view of whether this is sufficient. With the right support some can and do live fulfilling lives, despite the very difficult medical situations they endure. However this is not always possible. For those who, after careful and informed consideration, decide that their quality of life is permanently below the level  they can accept, the law needs to change.”

The film raises questions about unregulated well-meaning amateur groups like Final Exit Network. MDMD believes that a legal, regulated, professional assessment and support process would be a much safer way to ensure that people like Debra were making the right choice for themselves, having carefully considered all the options, before having a medically assisted death if that is their well-considered and persistent wish.”

“Louis Theroux’s documentary highlighted the empowering choice those who are within six months of dying possess in California. For those who are of sound mind and either terminally ill or incurably suffering, it is time for the UK to offer that choice as well.”

The final episode in Louis Theroux’s series “Take my Baby” will air on Sunday 25th November at 9pm.

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Videos from Healthcare and Secularism 2018 Conference

In October 2018, the National Secular Society and the Secular Medical Forum held a joint conference on Healthcare and Secularism. The final two talks concerned assisted dying and the right to die. Both talks were excellent. Videos of the talks are available on YouTube and are embedded here with some description and comments.

1. Dr. Jacky Davis – An Update on Assisted Dying – One hundred million people now have access to it, why can’t we?

Jacky Davis is the Chair of Healthcare Professionals for Assisted Dying (HPAD). Jacky is also a consultant radiologist at Whittington Hospital; a member of the BMA Council and of the BMA ethics committee; and a board member of Dignity in Dying.

The talk makes many excellent points – especially in covering why it is so difficult for the BMA to change its approach on assisted dying. Policy is decided by an annual conference of only 300 people. The BMA have so far refused to hold a ballot of all their members on whether to adopt a neutral position on assisted dying. MDMD strongly endorse Jacky’s calls for the BMA to hold such a vote.

Of particular interest to MDMD is Jacky’s description of a public debate in Gloucester which she took part in prior to the 2015 Marris Bill debate in the House of Commons. She said “I was in a position I often find myself in. I was being attacked because they [the audience] didn’t think that our position on assisted dying went far enough.”

Jacky went on to discuss criticism of the 6 month criterion. She dismissed, as “another straw man”, the argument used by some, that the difficulty of accurate prognosis was a reason for not changing the law. She then described those who wish to be able to have a medically assisted death: “These people are not people who want to commit suicide. These are people who want to live as long as they can, until they don’t want to any more.”

One really positive suggestion Jacky put forward was with the practicalities of doctors working with an assisted dying law. She estimated that, extrapolating from the situation in Oregon, each GP practice would expect to see one patient who wanted as assisted death every 7 years. GPs might reasonably be concerned that they wouldn’t know how to deal with such rare events. Jacky suggested regional teams of trained experts who GPs could work with.

2. Dr Michael Irwin – When will MARS (Medically Assisted Rational Suicide) land on the UK?

Michael was Medical Director of the United Nations; chairman of the Voluntary Euthanasia Society prior to it changing its name to “Dignity in Dying”; and a past president of the World Federation of Right-to-Die Societies. He founded the Society for Old Age Rational Suicide in 2009 and was its coordinator until 2015, after which it was renamed “My Death, My Decision” (MDMD). Michael is a patron of MDMD.

Michael picked up on a number of points made by Jacky, saying “I’m very much is favour of the Oregon Bill, but as a start, it should go much further.”

Michael discussed some different approaches to defining “terminal illness”, contrasting a GMC reference to “dying over the next 12 months” to the Oregon Bill’s 6 months, and the situation in Scotland where a recent change to benefit legislation replaced a 6 month “terminal illness” criterion with an evaluation by doctors on a case by case basis without requiring an estimate of life expectancy.

Michael pointed out that there is currently uneasiness in Oregon over their 6 month criterion with moves to expand it to cover longer term degenerative diseases.

MDMD Conclusions

These are two very experienced campaigners, both with a strong medical background. It is fascinating to hear both the common ground and the differences in their views. From MDMD’s perspective Jacky’s defence of the 6 month criterion does not stand up to serious scrutiny, although it may be a realistic political compromise in the UK and elsewhere in the short or medium term. We recognise that is has provided an important option to millions of people around the world – which we in the UK do not have.

However, dismissing the difficulties of accurately giving a life expectancy prognosis as a “straw man” seems too simplistic. Even without the moral dilemma of assisted dying, Scottish doctors found the criterion unacceptable and successfully pressed for this to be removed as a criterion in benefit assessments. If this is the case for benefit assessment, why not also for assisted dying?

Even more importantly, MDMD fully agrees with Jacky’s statement that the people who should be allowed access to medical assistance to die are “… people who want to live as long as they can, until they don’t want to any more”, (when this is due to the intolerable and incurable medical conditions they face, which even the best palliative care cannot alleviate). But Jacky’s description includes high profile cases like Tony Nicklinson, Debbie Purdy, and Omid T. None of these people could be helped by the Oregon-style law she advocates. In addition, some of those in early stage dementia fit her description, while they retain mental capacity – people like Alex Pandolfo who plans to go to Switzerland to end his life when his condition becomes unbearable for him. They face the later stages of dementia when mental capacity will be lost, but are also ineligible for help from an Oregon-style law. Dementia is now the cause of 1 in 8 of all deaths in England and Wales – and nearly 1 in 4 deaths of women over 80, according to the latest ONS data.

In her final interview, in December 2014, Debbie Purdy, who worked closely with Dignity in Dying in her campaign work, said “I think Lord Falconer, in saying that if you’re within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb – the people whose cases have all been public – all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest.” Michael Irwin, together with MDMD, Friends at the End and Humanists UK, very clearly support Debbie’s point of view. Jacky Davis failed to explain why she advocates an approach which wouldn’t help people like Debbie, while at the same time arguing for “people who want to live as long as they can, until they don’t want to any more”, to have the option of a medically assisted death, which is just what Debbie wanted. With this approach, we expect that Jacky will continue to hear the views she described from her audience in Gloucester.

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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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Conversations about Death and Dying Report

We held a very successful conference at the start of September. Speakers included Dr Naomi Richards, Dr Lonny Shavelson, Professor Celia Kitzinger, Adrian Ward and Mark Hazelwood. Copies of presentations can be found below.

Ahead of the conference Dr Shavelson spoke with BBC Radio Scotland. You can listen again to this here.

The conference was chaired by Rev Scott Mckenna who opened the conference by talking about assisted dying within a religious context. The Rev McKenna also spoke about the need for compassion at the end of life and that the move away from a paternalistic approach means we need to listen to each other about our wishes to ensure we have a good death.

Those who attended the conference heard about how Medical Aid in Dying worked in California, about the need for Advance Directives and what Incapacity means in Scottish Law.

C Kitzinger Presentation

A Ward Presentation

S Paul Presentation

N Richards Presentation

J Ramsey Presentation

D Grenham Presentation

L Shavelson Presentation

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Friends at the End Mourns the Death of Omid T

It is with great sadness that we hear of Omid’s death at the Lifecircle assisted dying clinic in Switzerland today.  Omid T was awaiting judgment from the High Court on his legal challenge seeking a change in the law on assisted dying,  challenge which was supported by Friends at the End.

Whilst a relief to know that Omid is finally at peace and that he died on his own terms, the frustration and injustice of his death in Switzerland is profound.
Omid, who our CEO Amanda Ward met on a number of occasions was witty, funny, charming and friendly to everyone he came across. He was also a very sick and profoundly disabled man, who should not have had to leave his home, the UK, to travel abroad to get the relief he so craved.
We are convinced that if our politicians experienced the pain and suffering Omid, his family, and the hundreds of others who have travelled abroad for a peaceful death have had to endure, they’d not want that for themselves or any of our citizens.
We are past the point of turning a blind eye – elected representatives must listen to their constituents, the overwhelming majority of whom support a safe controlled UK assisted dying law and act now.
Omid was a kind, compassionate, charming character – he’d already been through so much with his illness and he deserved better than having to take matters in to his own hands.

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Humanists UK mourns death of assisted dying campaigner Omid T who has died in Switzerland

Humanists UK member Omid T, who was awaiting judgement from the High Court on his legal case seeking to change the law on assisted dying, has died this morning at the assisted dying clinic Lifecircle in Switzerland, Humanists UK has announced.

Omid had multiple system atrophy (MSA) and Humanists UK has been supporting his legal case.

Humanists UK Chief Executive Andrew Copson said:

‘We are deeply saddened by the death of our member Omid T, who ended his life with medical assistance at Lifecircle in Switzerland today.

‘It is a tragedy, and also a national scandal, that Omid had to go to Switzerland to die with dignity. His desire was for a peaceful ending to his life here in England and his case underscores the need for our Parliament to allow people in his position the dignity of choice in their own country.

‘While not terminally ill, Omid was suffering immensely from his condition. He was bedridden, unable to move without assistance, in pain every day and found his life intolerable.

‘Of course, in any assisted dying law there must be strict legal safeguards in place. But being able to die, with dignity, in a manner of our choosing must also be understood to be a fundamental human right. Omid’s fight to change the law and claim that right for all of us will be his enduring legacy.

‘Omid was a passionate humanist and lived his own life to its fullest. Our deepest condolences are with his family, friends, and everyone else who was touched by his life.’

Update: On 9 October 2018, five days after Omid died at the Lifecircle clinic in Switzerland, the High Court ruled against Omid’s legal team in a preliminary matter to his challenge to the assisted dying law. His team had argued that they wanted to be able to cross-examine expert witnesses at the hearing but it was determined that they could not. How his case proceeds from here remains to be seen.

In handing down its decision, the court expressed sympathy and sadness for Omid’s case.

Omid’s story

When Omid first announced his case he told his story as follows:

‘I was born in Iran and came to the UK aged 12 in August 1975. I am a British Citizen. I started working at the age of 17 and have worked all my life  as a property developer until about 2008, when the first signs of my illness appeared.

‘I have also experienced the joy of being married and having children. I married my wife on 10th August 1990, aged 27 and we have 3 children. We separated on 30th March 2015. I don’t want people to see me suffering and  don’t want my children to remember me as I am now. This is my choice, rather than theirs.

‘The first signs of my illness were that my speech became very slurred and when I spoke on my mobile the listener could not understand me. I also began to experience difficulty in walking, writing and with other tasks.

‘In 2014, I was diagnosed with the incurable illness, Multiple System Atrophy (MSA), by consultants at the National Hospital for Neurology and Neurosurgery in London. Now I am largely confined to my bed, have to wear a catheter bag and need help with all my personal care. My speech has deteriorated and the muscle weakness continues apace.

‘I tried to end my life by taking an overdose in 2015, but I failed! I don’t have the ability to take my own life anymore and I don’t want to botch it up again anyway.’

Notes

For further comment or information, please contact Humanists UK Director of Public Affairs and Policy Richy Thompson at richy@humanism.org.uk or on 0781 55 89 636.

Details of the case

Omid has been represented by Saimo Chahal QC (Hon) of Bindmans LLP and Paul Bowen QC of Brick Court Chambers, who previously represented Tony and Jane Nicklinson and Paul Lamb, and Debbie Purdy before that as well. Humanists UK was intending to intervene in his case, working with Nancy Collins of Hodge Jones & Allen LLP alongside Caoilfhionn Gallagher QC and Graeme Hall, both of Doughty Street Chambers.

A court order prevents the name, address, or schools of Omid’s wife and children, or any personal details about them, including their photographs or images, from being published, as he did not want them to be contacted or disturbed in any way. Omid is referred to as Omid or T and his surname and the address of his home cannot be disclosed, under the terms of the same court order.

Omid had a preliminary hearing on some aspects of his case before the High Court earlier this year. A judgment on that preliminary hearing is expected shortly.

Read our previous news statement on Omid T’s case at: https://humanism.org.uk/2017/05/22/omid-granted-permission-to-challenge-illegality-of-assisted-dying/

Omid T was represented by Bindmans LLP. Read its statement: https://www.bindmans.com/news/omid-t

Read more about Humanists UK’s campaigns work on assisted dying: http://humanism.org.uk/campaigns/public-ethical-issues/assisted-dying/

At Humanists UK, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. Our work brings non-religious people together to develop their own views, helping people be happier and more fulfilled in the one life we have. Through our ceremonies, education services, and community and campaigning work, we strive to create a fair and equal society for all.

Conversations About Death and Dying – Radio Interview

In the run up to our conference Dr Lonny Shavelson spoke on BBC Radio Scotland along with Gordon Macdonald (Care Not Killing) and Rona Tynan (MS patient from Inverness).   You can listen in here starting at 2.22.00.

Lonny spoke about the need for change and about how the choice is made by a small number of people and that across the 7 states who have legal medical aid in dying in the US he has yet to come across a situation where someone has made the choice to use this option due to family pressure.

Rona spoke about how she felt it is cruel to not let someone end their life peacefully, and that we need to recognise that there is no one size fits all in end of life care and services need to be geared up to meet individual needs.

The post Conversations About Death and Dying – Radio Interview appeared first on Friends at the End.

Falkland Islands’ legislature passes motions in favour of assisted dying

The Falkland Islands Legislative Assembly has voted in favour of a motion to support the right of terminally ill islanders to choose a dignified assisted death, by a margin of four votes to three, with one abstention. The Legislative Assembly also passed a second motion stating that in the event that assisted dying is legalised in the UK, the Falklands Islands will also introduce it. Humanists UK, which campaigns for a change in law to allow those who are the terminally ill or incurably suffering to have an assisted death, welcomes this vote.

These motions on the Falkland Islands follow debates in the crown dependencies of Guernsey and Jersey on assisted dying. In May, the States of Guernsey Assembly voted against proposals which were brought forward by Chief Minister Gavin St Pier and were supported by Channel Islands Humanists and Humanists UK.

Humanists UK Director of Public Affairs and Policy Richy Thompson commented, ‘Although this vote does not directly change the law on Falkland Islands, it is indicative of growing support for change across the UK, crown dependencies, and overseas territories. The Falkland Islands are leading way on this issue.

‘As medical science has become more advanced, so too has our ability to keep people alive for longer than ever before. This development in science is to be welcomed but it also means that many people end up suffering for longer before they die. The motions on which the Falkland Islands has voted, therefore, are needed more now than at any other time in our history.’

Notes

For further comment or information, please contact Humanists UK’s Director of Public Affairs and Policy Richy Thompson at richy@humanism.org.uk or on 0781 55 89 636.

In 2013-14, Humanists UK intervened in support of Tony and Jane Nicklinson’s and Paul Lamb’s attempts to overhaul the law on assisted dying for the terminally ill and incurably suffering by taking human rights cases through the courts. Humanists UK also supported subsequent attempts in the UK Parliament to legalise assisted dying for the terminally ill.

This year, Humanists UK intervened in the Court of Appeal case of its member Noel Conway, who is terminally ill, and is intending to do the same in the anticipated High Court case of its member Omid T, who is seeking to also allow assisted dying for those who are not terminally ill but are incurably suffering.

Read more about Humanists UK’s campaigns work on assisted dying: http://humanism.org.uk/campaigns/public-ethical-issues/assisted-dying/

At Humanists UK, we advance free thinking and promote humanism to create a tolerant society where rational thinking and kindness prevail. Our work brings non-religious people together to develop their own views, helping people be happier and more fulfilled in the one life we have. Through our ceremonies, education services, and community and campaigning work, we strive to create a fair and equal society for all.