Legal Action

PRESS RELEASE: Right to Die Campaigner Noel Conway Loses challenge in UK’s Highest Court

Today, assisted dying campaigner Noel Conway has lost permission to bring a case before the Supreme Court.

Diagnosed with Motor Neurone Disease (MND) four years ago, the retired teacher from Shrewsbury, is dependent upon a ventilator for up to 23 hours a day and has limited movement in his right hand, neck and head. Mr Conway now says that he wants the choice to decide when and how to die. However, he would be unable to do so without assistance.

Under current UK law, it is a criminal offence to assist the death of another and anyone found guilty faces a jail sentence of up to 14 years. However, at a permission hearing last week, Mr Conway’s lawyers argued that Section 2(1) of the 1961 Suicide Act was in breach of the 1998 Human Rights Act and should be declared incompatible.

In a handed down judgement today, the 3 justice panel comprising President Lady Hale, Deputy-President Lord Reed and Lord Kerr said that despite some legitimate differences of opinion within the court:

“Mr Conway could bring about his own death in another way, by refusing consent to the continuation of his NIV.”

“Ultimately, the question for the panel is whether the prospects of Mr Conway’s succeeding in his claim before this court are sufficient to justify our giving him permission to pursue it, with all that that would entail for him, for his family, for those on all sides of this multi-faceted debate, for the general public and for this court. Not without some reluctance, it has been concluded that in this case those prospects are not sufficient to justify giving permission to appeal.”

Mr Conway’s case followed almost two months after another assisted dying campaigner, Omid T, had lost a similar legal challenge and ended his life in Switzerland.  

It is unclear what the longer term implications of this judgement may be. There is some indication from the court’s focus upon Mr Conway’s non invasive ventilation, that it would be possible for a different claimant, without this option, to bring a new case in the future.

Phil Cheatle, Coordinator of My Death, My Decision (MDMD) an organisation which campaigns for the law to change said:

“The public overwhelming support a positive change in the law, to help those like Noel to die with the dignity they deserve. Sadly, our courts and our parliamentarians are divided.”

“Motor Neurone Disease robbed Noel of his independence. It will eventually rob him of his dignity. Tragic as this is, it is not because of Motor Neurone Disease that his family will now be robbed of a peaceful last memory. It is because the law is wrong. We will continue to fight to help those like Noel and countless others incurably suffering.”

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

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

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

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

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

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

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

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

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

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

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Hospital trust pays out £45,000 for ignoring an Advance Decision

The BBC report the case of 81 yr old Brenda Grant who was kept alive for 22 months by artificial feeding, against the instructions in her Advance Decision, (AD), because the AD had been mislaid in her medical notes.

The case is horrifying. People write ADs in order to refuse treatment at the end of life, and hence hasten their death, if and when they are no longer able to communicate effectively themselves. There are many important points about this story:

  • Some UK healthcare processes do not take sufficient care to ensure that a person’s AD is recorded and honoured appropriately. This case should act as a warning to healthcare administrators to ensure they have systems in place to make the AD process work as intended. An AD to refuse treatment is legally binding on healthcare professionals.
  • The case should encourage others, who suspect a relative’s AD has not been honoured, to take legal action. Such cases are very important to put pressure on NHS administrators and care home operators to ensure ADs are handled appropriately.
  • In practice, at present, it seems that having a relative or friend who can act on a patient’s behalf to ensure that the AD is followed is highly desirable. MDMD Coordinator Phil Cheatle says: “My personal experience with my mother and my aunt, (both of whom had advanced dementia at the time), is that without me physically taking a copy of their ADs to the hospital every time they were admitted, and ensuring that the doctors were aware of them, the documents would have been ignored. Once doctors saw the AD, I generally found them very helpful in restricting treatment. In my aunt’s case, the consultant stopped all life-preserving medication immediately, in accordance with her wishes expressed in her AD. Without my intervention this wouldn’t have happened.”
  • It appears that Brenda Grant had not given a copy of her AD to her children. Similarly it had not reached her nursing home. It was only when her GP discovered the AD that artificial feeding was stopped… 22 months later. The lesson here is clear – give copies of your AD to people who you can trust to act for you, possibly formally appointing them as a Power of Attorney for Health and Welfare. Make sure that the people you trust know that they need to personally show the AD to nursing homes, hospital doctors and other healthcare workers. The system does not always work automatically.
  • The problem may be of particular concern in A&E departments. How many patients are given emergency life-saving treatment which they state clearly in their AD that they would wish to refuse? It seems that we need processes for ADs, to ensure they are checked at the early stage of hospital admission, similar to the DNAR processes. In the meantime, perhaps the best thing to do is to discuss your AD with your doctor and, if appropriate, ask them to write a DNAR order for you.
  • A particularly telling aspect of this story is that Brenda Grant is reported to have made her AD because she feared degradation and indignity more than death after seeing her mother lose independence through dementia. Many MDMD supporters share this concern, which is quite understandable now that dementia is the leading cause of death in England and Wales. This is an example of why MDMD campaigns for an assisted dying law which is not restricted to those who are within six months of dying and who have sufficient mental capacity at that time. Such a law would be very unlikely to help anyone dying of dementia, which can lead to prolonged degradation and indignity.

If you haven’t written an AD and given copies to your doctor, and to people you trust to act for you, MDMD strongly recommend that you do so. Despite this case, ADs are an essential part of end of life planning. For further information on Advance Decisions and Power of Attorney for Health and Welfare, see our page on Advance Planning.

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Pharmacist driven to break a bad law.

The Daily Telegraph has been following another case relating to assisted suicide / murder. Pharmacist Bipin Desai was accused of giving his 85 year old father a lethal drink containing concentrated morphine stolen from the pharmacy where he worked. The high court judge threw out the charge of murder, allowing Mr Desai to go free with a nine month jail sentence suspended for nine months for assisting suicide.

What message do cases like this give to our society? That it is acceptable to steal lethal drugs and apply them out of compassion… but make sure you can demonstrate that you were asked to do it? Is that the best we can offer?

But what if you are not “lucky” enough to have access to appropriate drugs and know how to use them? Or there wasn’t enough evidence that you were being asked to help someone die, if indeed you were? Or you just couldn’t bring yourself to break the law – leaving the dying person to suffer at their end of life, against their will; and leaving the family to suffer as they powerlessly watch the unacceptable situation unfold.

This story is by no means isolated. Only last month another case was reported with some similarities.

We owe our elderly people and their families much better care than this. Where are the safeguards in the current law? Where is the compassion? How can people be expected to deal with the natural desire to do the best they can for their loved ones, but then have to face not just the loss of their relative, but a stressful and difficult criminal investigation which turns their life upside down for years afterwards?

There is a better way, as demonstrated in the more enlightened countries that allow a legal option of medically assisted dying. At a minimum, BEFORE any lethal drugs are administered:

  • The person wishing an assisted death should make their end of life wishes known well in advance – ideally in a written, independently witnessed statement, in addition to an advance decision.
  • All possible support should be given to help people adjust to changed capabilities before choosing to end their life.
  • All available palliative care options should be fully considered and found unacceptable.
  • The situation should be assessed by multiple professionals, over a period of time, in particular by interviewing the person concerned to determine that their wishes are clear, consistent and made without coercion.

We need a better approach to end of life care – one in which the option of a medically assisted death can be openly discussed with the care team, and as a last resort, carried out by trained professionals.

We need to protect people – the dying, the vulnerable, the well meaning families – from situations like this court case. The judge appears to have taken a reasonable course of action, given the current law. But the real tragedy is that these sort of situations are allowed to happen – by a broken law and restricted medical practice which prevent some people having the “good death” they wish for.

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When is it right to turn off Life Support?

The Daily Mail recently reported a case of a 74 year old woman in a minimally conscious state, whose daughter has won a court case to have her mother’s life support turned off. The NHS Trust involved, acting in the patient’s “best interests”, wished to continue treatment, but this was over-ruled by the judge. It appeared very unlikely that the woman’s condition would ever improve, though with continuing treatment she might live for three to five years.

The case turned on an old email the daughter found in which her mother said “Did you see that thing on dementia? Get the pillow ready if I get that way!” The judge took this as evidence of the woman’s wishes not to be kept alive. The case has strong parallels with that of police officer Paul Briggs.

These cases highlight the importance of writing an advance decision, clarifying a person’s wishes for refusing treatment (including refusing artificial feeding and hydration), in the event that at some point in the future they are no longer able to make treatment decisions for themselves. With an advance decision to refuse treatment in place, everyone would clearly understand the patient’s wishes, and medical staff are legally required to follow the patients wishes regarding treatment refusal.

We owe it to both our well-meaning relatives and to our doctors, to avoid difficult conflicts like this where people with different opinions about what is best for us have to argue it out in court. It can’t be pleasant for them, whichever side of the argument they are on, and it certainly isn’t good for us if our wishes are not acted upon, or are delayed.

MDMD strongly encourages everyone to make an advance decision, regardless of age or current health. See our advice on end of life planning here. If you haven’t written yours, please do so… and then encourage others to write theirs.

Some might think that allowing someone to die by turning off artificial feeding and hydration is cruel, arguing instead for a right for euthanasia in such cases. When the person is in a coma, and with appropriate pain killers, the dying person will not suffer, even though the dying process may take around 2 weeks. Most importantly, turning off life support is currently legal in the UK, whereas euthanasia is not.

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Update on Omid T’s High Court Case

Omid T suffers from Multiple Systems Atrophy. An incurable condition which has permanently reduced his quality of life below the level he is able to accept. It is not a terminal condition – he may have to continue suffering against his will for many years. Omid is taking legal action to request medical assistance to die. He is unable to take his own life, with dignity, without assistance.

Omid’s case differs from that of Noel Conway, who is also taking legal action, as Noel Conway is only arguing for medical assistance to die once doctors believe he has six months or less to live. For people like Omid, a six-month criterion is too restrictive as they have to suffer unacceptably for many years before that point, which doctors may have extreme difficulty in accurately predicting.

Omid’s case is approaching the next stage, with a High Court judgement due on 21st November 2017.

There is no palliative care that can help me. My life is beyond that

Omid’s latest message is available here. In it he says “There is no palliative care that can help me.  My life is beyond that”. This highlights the limits of palliative care, touted by some as a reason why legalised assisted dying is unnecessary. While palliative care is a great help for many, and MDMD strongly supports the efforts of those who work in this area, we believe those involved in palliative care should recognise the limitations of their approach and the choices of people like Omid for whom even the best available palliative care is unable to make their life tolerable for them.

Omid’s case still needs funding. Please donate if you are able, on his crowdjustice page.

Saimo Chahal, the Bindman’s lawyer leading Omid’s case, has written a useful article in the Law Society Gazette about the case, and the impact of the recent ruling in the Conway case. The full Conway ruling is available here.

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