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Another incurably suffering man launches new assisted dying challenge

Phil Newby, 48, who suffers from advanced Motor Neurone Disease, has announced his intention to bring a new legal case challenging the UK’s law on assisted dying. 

Phil, who was diagnosed with the progressive neurological condition in 2014, is unable to walk and has lost the ability to control movement in his arms and hands. He argues that the UK’s law, which prohibits anyone from assisting him to end his own life, is incompatible with his fundamental human rights to private life and against inhumane treatment. Phil proposes to change the law so as to permit mentally competent adults who are either facing incurable suffering or have a life-shortening progressive degenerative condition which will ultimately lead to death, to request a dignified death. 

Under the 1961 Suicide Act, anyone found guilty of assisting another to end their life could face a maximum of fourteen years’ imprisonment. In 2015, the House of Commons debated but rejected a proposal from Rob Marris MP, which would have legalised assisted dying for those who are likely to die within six months, by 330 votes to 118. 

Phil Newby’s case differs from the proposed case that Paul Lamb, My Death, My Decision’s patron, intends to bring forward, as Phil intends to follow the successful approach which overturned the law on assisted dying in Canada and was intended to underline in the landmark Omid T case, before he ended his life at Lifecircle in Switzerland. This means that, if granted permission, the UK’s most senior judges will be invited to comprehensively review the evidence on assisted dying, before ruling on its compatibility under the Human Rights Act 1998.  

Phil Newby has issued a letter to the Justice Secretary and received a response, but is asking for support from the public to cover experts’ expenses and legal fees before he can progress. He has already raised over £18,000.

Phil Newby said:

“I’ve come to accept that MND will eventually kill me, but I’m determined to enjoy life and contribute to my family for as long as I possibly can. When the time comes, I would like compassionate medical help to die in peace at home, with my family. Instead, my wife and girls face watching me starve, choke or suffocate to death, because of our inhumane and outdated laws that criminalise assisted dying.

It doesn’t have to be this way. Other countries have introduced a compassionate and common-sense assisted dying legal framework, with safeguards. 

This case will be the biggest fight of my life, and I can’t do it alone. I’m asking the public to support me by sharing my story and donating to our legal fund through CrowdJustice. Our legal strategy seems to be winning plaudits from members of the public, journalists, and commentators alike, because it simply asks for our senior judges to carefully examine the evidence for and against assisted dying. Together, we can make a change.” 

Trevor Moore, Chair of My Death, My Decision said:

“Now more than ever, as society has become increasingly adept at extending the length of life, but not always its quality, the right to decide the manner and timing of your own death should be seen as a fundamental human right. We welcome Phil Newby’s decision to challenge our country’s archaic stance on assisted dying, and stand up for those who are of sound mind and either terminally ill or incurably suffering. We don’t consider terminal illness alone to be a reliable measure of someone’s suffering or quality of life, nor believe that the option of a peaceful, painless, and dignified death should be limited to someone with six-months left to live. We welcome this as yet another step forward in our country’s long journey towards a compassionate change in the law.”

Saimo Chahal QC (Hon), Solicitor, Bindmans LLP said:

“It is vital that the courts should consider Phil’s case and the legal arguments for and against allowing a law change so as to come to an informed and balanced decision. This has not happened to date and the time is ripe for the issues which Phil raises to be confronted.  Expert evidence should be allowed with cross examination of all experts both for and against Phil’s claim so that the arguments can be fully tested in court as much of the debate in this area has focused on unsubstantiated and emotive stories about the harm that a law change would result in, without the evidence to back up these claims.” 

He is being represented by Saimo Chahal QC (Hon), Partner, Bindmans LLP, and counsel  Paul Bowen QC of Brick Court Chambers with Jennifer Macleod and Adam Wagner of Doughty Street Chambers.

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MDMD welcomes the news that patron, Paul Lamb, intends to bring a new right-to-die case

Paul Lamb, who previously took his case for the right to die to the Supreme Court, is now seeking to bring forth a new attempt to change the UK’s law on assisted dying.

(Sourced from MDMD’s co-founder of the assisted dying coalition, Humanists UK: https://humanism.org.uk/2019/05/07/paul-lamb-to-bring-new-legal-case-for-the-right-to-die/)

Paul Lamb, 63, was severely injured in a car accident in 1990 and has no function below his neck apart from limited movement in his right hand. He requires around the clock care and is in constant pain. Mr Lamb does not want to end his life yet, but knows that as he gets older he will inevitably need assistance to die. He argues that the current law – which prohibits any assistance and carries up to fourteen years imprisonment if someone is convicted – breaches his human right to a private and family life.

Five years ago, I asked our courts to give me the right to control my own death and they told me to wait. Since then I have watched and waited as new evidence has emerged and progressive countries have given millions of others the choice I have asked for. And still the UK Parliament has done nothing. I have no option but to ask the Court to intervene again. I need them to help me, and many others in my position, to end this cruel and discriminatory law” – Paul Lamb

Alongside Jane Nicklinson, the widow of locked-in sufferer Tony Nicklinson, Paul Lamb previously challenged the UK’s 1961 Suicide Act by taking a case to the Supreme Court in 2014, and the European Court of Human Rights. However, whilst the Supreme Court reached a split verdict on the legality of the UK’s prohibition in 2014, including a notable dissent from the now President of the Supreme Court, Lady Hale, it held that Parliament must be afforded an opportunity to debate the issue before the courts might decide to change the law.

But then in 2015, the House of Commons rejected a proposal from Rob Marris MP which would have legalised assisted dying for those who are likely to die within six months, by 330 votes to 118.

Assisted dying is now legal in this form in five countries, most recently Canada, and is also legal for terminally ill people specifically in one country, eight US jurisdictions, and soon to be in the Australian state of Victoria.

Recently, new figures released by the Assisted Dying Coalition, of which Humanists UK is a member, also found that more than one person a week now travels to Switzerland to end their life. New Research from My Death, My Decision also indicates that 88% of people in England and Wales favour assisted dying for those who are incurably suffering, in at least some situations.

Announcing his intention, Paul Lamb said:

“I am paralysed from the neck down and live in a state of constant pain. In the future my suffering will inevitably become too much to bear. When that happens, I want to be able to control and choose the circumstances of my death. As the law stands, my only option would be to die through the inhumane process of dehydration and starvation. This situation cannot be allowed to continue.”

Commenting on the announcement from My Death, My Decision’s Patron, MDMD’s Chair Trevor Moore said:

“Throughout his life, Paul Lamb has stood up for the rights of others, and today he has done so once again. His case encapsulates what the campaign for a fairer and more compassionate law on assisted dying is about.”

“In his judgement on the Tony Nicklinson case, Lord Neuberger remarked there was “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.” We applaud Paul’s bravery in taking this case forward and hope that compassion and respect for his freely reached decision will prevail.”

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MDMD Coordinator asks Baroness Finlay how to avoid late stage dementia

On 29th November 2018 Baroness Ilora Finlay gave a talk at Bristol University titled “As the light fades: Do law and ethics collide?”. Baroness Finlay is a professor of palliative medicine at Cardiff University and a long-standing prominent opponent of assisted dying. Her talk gave a full account of the problems and dangers she sees with assisted dying legislation as it exists in various countries around the world. MDMD is sympathetic to at least some of her concerns, but reaches different conclusions. In Baroness Finlay’s view no change in the law is necessary or desirable, in part because one option people already have is to refuse life sustaining medication.

In the Q&A section MDMD Coordinator, Phil Cheatle, asked a question regarding dementia, a terminal illness where sufferers do not require life sustaining medication which can be refused. Dementia is particularly important as it is feared by many people and is increasingly common. The discussion about how assisted dying can safely be made available to dementia sufferers is something which is actively being discussed and reviewed around the world. In Switzerland medical assisted suicide is permitted for those with early stage dementia provided the person still has the mental capacity to make a life ending decision at the time of the assisted death. In the Netherlands and Belgium euthanasia is permitted for those with dementia who lack mental capacity provided they have written an advance decision requesting euthanasia in those circumstances. In USA and Canada there is public debate about possibly broadening their assisted dying laws to include people suffering with dementia.

In Phil’s question to Baroness Finlay he explained that his experience of his mother’s end of life suffering from dementia taught him that he really didn’t want to die like that. He then asked:

 “What should I do to avoid an unpleasant death from dementia?”

Baroness Finlay started by saying that with dementia a patient doesn’t have mental capacity. Phil clarified that he was thinking of early stage dementia before mental capacity was lost. Baroness Finlay then said “Putting it bluntly, there’s no law against committing suicide.” Phil responded by asking how people should do this without access to appropriate medication. She replied by saying that “there are people ordering drugs over the internet now and taking overdoses”, though she was very clear that she was not suggesting that people should do this. Phil followed up by pointing out that this was highly risky, and that you can’t be sure what you are buying. Surely there must be a safer way to ensure people have a good death?

Baroness Finlay then explained that if society were to decide that lethal medication was to be legally obtainable within the UK, then there would need to be a body which brought a set of different skills together to ensure safeguards were followed. She mentioned clinical psychologists, for example, to assess the person’s mental state. She questioned whether the medical profession should be involved at all, saying “why is it a medical duty, if you want to commit suicide and you have early dementia and you have capacity, then why is it a medical duty to supply you with lethal drugs? And if the law is going to change, why not have other groups in society assess you, people who can legitimately make sure that you’re not being coerced, that you’re not being pressurised?”

Reflecting on her answer afterwards, Phil Cheatle said: “It is very surprising that Baroness Finlay answered my question by saying that ‘there’s no law against committing suicide’, as if that were an acceptable answer to the very real concern that I raised. Surely palliative care should be able to offer something more compassionate, while respecting the person’s end of life wishes? Feeling the need to take one’s own life, without the opportunity for professional help in evaluating if that is really the best death possible, and without safe access to appropriate methods, is something MDMD wants to avoid. The MDMD website lists many reasons why taking your own life, unaided, is dangerous and unacceptable.”

“MDMD shares Baroness Finlay’s desire for strong, effective and workable safeguards in any assisted dying legislation. We welcome any opportunity for constructive discussion about the nature of the regulatory body she suggested. This approach may be a way forward to break the current impasse between the medical, legal and political positions. However, MDMD would prefer assisted dying to be closely integrated with palliative care, as happens in parts of Belgium, as this would help ensure that all palliative options were considered before choosing a medically assisted death.”

[Updated 18th May 2019 after MDMD was given access to a transcript of the discussion of Phil’s question which enabled a more accurate reflection of the views Baroness Finlay expressed.]

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update 19th March 2018:

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

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