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Voluntary Euthanasia Case Study

A man who is physically  unable to commit suicide  yesterday took his 'right-to-die' case to the High Court.

A stroke in 2005 left Tony Nicklinson with 'locked-in syndrome' – mentally sound but paralysed from the neck down and unable to speak.

At the High Court in London, he described his existence as 'dull, miserable, demeaning, undignified and intolerable' as he began his landmark case that challenges the law on murder.

Court plea: Tony Nicklinson, 58, pictured with his wife Jane, suffers from 'locked-in' syndrome. His case will be heard at the High Court today

He wants the three judges to rule that if, and when, he decides he wants to die, a doctor will be immune from prosecution if they help him.

Mr Nicklinson, 58, who communicates by blinking or with limited head movement, described having no 'privacy or dignity left' and said his right to choose life or death had been taken away,

And a recent Twitter campaign urging him to live has only reinforced his resolve.

In an email sent to his solicitor last week, that his barrister read to the court, Mr Nicklinson said: 'All this current activity making documentaries and writing articles has reminded me of how much I want my life to end.

'I know you said this hearing is all about the legal arguments but is it possible for you to tell/remind the judges a few things? I have wanted my life to end since 2007, so it's not a passing whim.

'I know consent makes no difference but the doctor has it anyway.

Condition: Mr Nicklinson suffered a massive stroke which left him paralysed from the neck down and unable to speak

Legal arguments are fine but they should not forget that a life is affected by the decision they come to – a decision that goes against me condemns me to a "life" of increasing misery. I'm sure the judges have heard it all before but I simply wanted to get it off my chest.'

Mr Nicklinson, from Melksham in Wiltshire, is supported by wife Jane, 56, and daughters Lauren, 24, and Beth, 23, all of whom were in court yesterday.

Mr Nicklinson cannot be present for the hearing, but outside court Mrs Nicklinson said: 'We are just really happy that the time has come for Tony to get heard in court. Whatever happens, there are no happy endings in this one.'

Mr Nicklinson added: 'It is misery created by the accumulation of lots of things which are minor in themselves but, taken together, ruin what’s left of my life.

'I can’t tell you how significant it would be in my life, or how much peace of mind I would have, just knowing that I can determine my own life instead of the state telling me what to do - staying alive regardless of my wishes or how much suffering I have to tolerate until I die of natural causes.

'I cannot scratch if I itch, I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby - only I won’t grow out of it, unlike the baby.

'I am washed, dressed and put to bed by carers who are, after all, still strangers. You try defecating to order while suspended in a sling over a commode and see how you get on.'

Nicklinson's daughter told the court how her dad has 'absolutely no interest in his surroundings and very little interest in the people in his life' following the stroke.

She said her father's condition had 'ripped the very core and essence out of him': 'He is forced to live an existence, trapped in a broken body, following someone else’s rules, rules that he cannot abide by.'

'He is living a life he does not wish to live. This is pure torture for him.'

The barrister of Tony Nicklinson, 58, told three judges in London that he was not seeking to persuade the court to 'introduce an all-encompassing new regime legalising euthanasia and assisted suicide.'

Mr Nicklinson suffered a catastrophic stroke in 2005 while on a business trip to Athens which left him paralysed below the neck and unable to speak.

Hearing: Mr Nicklinson's wife Jane and daughters Beth (left) and Lauren (right) arrive at the High Court in central London where judges will decide if he should be given the right to have someone help him to kill himself

Paul Bowen QC, speaking in a packed courtroom, added: 'The claimant, who has made a voluntary, clear, settled and informed wish to end his own life with dignity, is too disabled to do so.

'The current law of assisted suicide and euthanasia operate to prevent him from adopting the only means by which he could practically end his life, namely with medical assistance.

'He is condemned to an existence he does not wish to live in a state of suffering and indignity that no-one should be forced to endure.

'This state of affairs constitutes a serious interference with his common law and Convention rights of autonomy and dignity.'

The law was 'anomalous and discriminatory', failing to protect the 'very people it is intended to protect'.

He said: 'It has not stopped the widespread practice of euthanasia but has forced it underground, where it is unregulated.'

The QC added: 'There are in the region of 3,000 cases of euthanasia in this country every year which are not reported.'

The law 'encourages those with the means and the ability' to go abroad to Switzerland 'where they meet their end earlier than they might otherwise wish'.

For those without the means it 'offers Hobson’s choice of an amateur, DIY suicide or continued suffering'.

Campaign: Within days of posting his first tweet, people began contacting Tony Nicklinson, who has 'locked-in syndrome', with pro-life messages

Mr Bowen told the court: 'Public support for a change in the law is overwhelming.' Mr Nicklinson is seeking two declarations from the court.

One is that in the circumstances of his case - and where an order has been sought from the court in advance - 'the common law defence of necessity would be available to a doctor
who, acting out of his professional and human duty, assisted him to die'.

The other is that the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity.

While he would welcome such a change, he accepts that such a regime can only be introduced by Parliament.

'However, there is no sign of Parliament introducing such a regime any time soon that would afford

Mr Nicklinson, from Melksham, Wiltshire, maintained that in the absence of statutory regulation he is entitled to 'remedy' from the court.

Mr Bowen said the current law was 'anomalous and discriminatory' and had not stopped the 'widespread practice of euthanasia but has forced it underground'.

During a four-day hearing Lord Justice Toulson, sitting with Mr Justice Royce and Mrs Justice Macur, will hear argument in a further 'landmark' judicial review action brought by a man who suffered a 'massive' stroke three years ago at the age of 43.

The man, who cannot be named for legal reasons, but is referred to as Martin or AM, is unable to move, is able to communicate only by moving his eyes, requires constant care and is entirely dependent on others for every aspect of his life.

He communicates by blinking or limited head movement and sums up his existence as 'dull, miserable, demeaning, undignified and intolerable'.

Before the stroke Mr Nicklinson was a 'very active and outgoing man'.

He describes having no 'privacy or dignity left' and says that what he objects to is having his right to choose taken away from him.

Mr Nicklinson cannot be present for the hearing, but speaking before the proceedings began, his wife Jane, 56, said: 'We are just really happy that the time has come for Tony to get heard in court and we’re just hoping for a good outcome.'

She acknowledged: 'Whatever happens, there’s no happy endings in this one.'

The Nicklinsons’ daughter Lauren, 24, said: 'I think for us, because we knew the person that dad was before this, it makes it easier to accept. I know that if me and (sister) Beth were in that position, he’d be fighting for us the same way that we are fighting for him.'

Asked about the landmark nature of the outcome of the case, Miss Nicklinson said: 'For us, it’s about dad. We appreciate we’ll have impacts on other people - hopefully, we’re going to give other people in dad’s situation their similar rights as well - but for us three, it’s about dad.'

Her sister Beth, 23, said: 'We always knew he’d feel like this so it didn’t come as a shock that this is the point that it’s come to.'

In a letter to theBBC, written using computer software which tracks his eyeball, Mr Nicklinson said: 'It cannot be acceptable in 21st Century Britain that I am denied the right to take my own life just because I am physically handicapped.

'Assisted dying is a controversial issue which aims to help people to die who are physically unable to take their own life or who can take their own life but want help to do so.

'I must declare an interest because I am unable to take my own life. I require amendment to the murder law to make it lawful in certain circumstances for one person to take another's life (euthanasia) and is the substance of my imminent court hearing.

'Despite moments of gloom at the enormity of my task, I am kept going by the fundamental injustice of my circumstances and the need for change so that others won't have to endure such indignities if they don't want to.

'It is astonishing that in 1969 we could put a man on the Moon yet in 2012 we still cannot devise adequate rules governing assisted dying.

Mr Nicklinson's case prompted a huge Twitter campaign after he took to the social network to explain his reasons for wanting to end his own life.

His first message read: ‘Hello world. I am Tony Nicklinson, I have locked-in syndrome and this is my first ever tweet.’

Mr Nicklinson soon gained a following with strangers from around the world bombarding him with pro-life messages urging him to change his mind.

Urged: Tony Nicklinson has been bombarded with messages on Twitter urging him to change his mind about seeking the right to die

He recently joined Twitter, where his case and the issues surrounding it have attracted widespread interest from thousands of followers, but his wife said it would not change his mind.

She said: 'Yeah, it’s amazing. He’s really enjoying it, I think. I didn’t think he would but he’s having a great time and he’s got over 25,000 followers now.

'It’s a little bit of a distraction for him at the moment but it wouldn’t be enough (to change his mind).

Asked how Mr Nicklinson felt about not attending court, she said: 'He’s disappointed but he understands it’s just too difficult, it’s too long a day for him.'

The Nicklinsons’ daughter Lauren, 24, said: 'I think for us, because we knew the person that dad was before this, it makes it easier to accept. I know that if me and Beth were in that position, he’d be fighting for us the same way that we are fighting for him.

Asked about the landmark nature of the outcome of the case, Miss Nicklinson said: 'For us, it’s about dad. We appreciate we’ll have impacts on other people - hopefully, we’re going to give other people in dad’s situation their similar rights as well - but for us three, it’s about dad.'

Her sister Beth, 23, said: 'We always knew he’d feel like this so it didn’t come as a shock that this is the point that it’s come to.'

He will also be asking for a second declaration over his right to respect for private life under Article 8 of the Human Rights Convention.

The declaration sought is that the 'current law of murder and/or of assisted suicide is incompatible with Mr Nicklinson’s right to respect for private life under Article 8...in so far as it criminalises voluntary active euthanasia and/or assisted suicide'.

He was given the go-ahead for his legal action to proceed by a judge at the High Court in March who rejected a Ministry of Justice move to have the case 'struck out'.

Mr Justice Charles heard argument that it was not for the courts to act, but Parliament.

In his ruling he said the underlying issues in the case 'raise questions that have great social, ethical and religious significance and they are questions on which widely differing beliefs and views are held, often strongly'.

Mr Nicklinson accepted that 'what he is seeking to do is to change the existing understanding of the common law'.

Before the stroke Mr Nicklinson, who has two grown-up daughters, was a 'very active and outgoing man'.

As well as working as a senior manager for the Greek engineering firm, Mr Nickinson was chairman of his local golf club and described by his family as 'the life and soul of the party'

Since the incident, however, he has described having no 'privacy or dignity left' and says that what he objects to is having his right to choose taken away from him.

In a court statement he says: 'By all means protect the vulnerable; by vulnerable I mean those who cannot make decisions for themselves. Just don’t include me. I am not vulnerable.

'I don’t need help or protection from death or those who would help me.

'If the legal consequences were not so huge, i.e. life imprisonment, perhaps I could get someone to help me. As things stand, I can’t get help.

'I am asking for my right to choose when and how to die to be respected.'

Response: Strangers from around the world have contacted Tony Nicklinson with pro-life messages

He wants a doctor to be able to terminate his life, with his consent and with him making the decision with full mental capacity.

At a previous hearing his QC Paul Bowen said his case was that 'an act of euthanasia or assisted suicide' was the only means 'by which his suffering may be brought to an end and his fundamental common law rights of autonomy and dignity may be vindicated'.

Mr Nicklinson recently joined Twitter, where his case and the issues surrounding it have attracted widespread interest from thousands of followers.

In the other case, Martin will challenge the director of public prosecution’s policy on assisted suicide, which he argues is insufficiently clear and fails to have regard to someone in his position.

He is not requesting a change in the law, but is asking that the DPP amend his current guidance so that professionals would not face criminal and/or disciplinary action if they helped him end his life.

At a preliminary hearing in his action, Lord Justice Toulson described it as a 'tragic' and 'exceptional' case which raised 'thorny legal and ethical issues'.

He said Martin lives at home in a specially adapted room and spends virtually all of his time in bed.

He is looked after by his wife, to whom he is 'very close', and a team of full-time carers.

Martin has a 'strong' and 'constant' wish to end his life, but is unable to take the necessary steps 'unless others take them for him'.

His wife did not wish to 'play any part in hastening his death' and no other family member is willing to help him end his life.

Before the stroke: Mr Nicklinson's condition has meant he has spent most of the past seven years alone in his room and unable to communicate with family and friends

Among those who support the legal battle is neurologist Dr Stelios Doris, who saved Mr Nicklinson’s life after he had a stroke.

On a Channel 4 Dispatches, programme about Mr Nicklinson’s case which will air tonight, Dr Doris said: ‘Death is more normal than to stay alive in this condition. So when I was informed that he was still alive I was surprised and sad also. I wouldn’t like for even for my worst enemy to stay alive in this condition for so many years.’

Earlier this year, an independent commission on assisted dying concluded for the first time that certain people should be helped to die. But this only applies to those who are terminally  ill and are able to take the final action to end their lives themselves – which excludes Mr Nicklinson.

Some campaigners have objected to the way Mr Nicklinson has been bombarded with outspoken messages  on Twitter.

A spokesman for campaign group Dignity in Dying, which does not entirely support Mr Nicklinson’s case, said they hoped ‘people will be respectful of Mr Nicklinson on Twitter regardless of whether they agree with him or not’.

A retired lecturer who is terminally ill has launched a legal challenge for the right to die, claiming that the 1961 Suicide Act condemns him to an undignified and terrifying death.

Noel Conway, 67, from Shrewsbury, was diagnosed with motor neurone disease more than two years ago and fears being “entombed” in his own body as his ability to move declines. He is not expected to survive beyond the next 12 months.

Supported by the organisation Dignity in Dying, Conway has instructed the law firm Irwin Mitchell to seek permission for a judicial review in the high court of the ban on assisted suicide which, he says, prevents him ending his own life without protracted pain.

Assisted suicide is prohibited by section 2(1) of the Suicide Act 1961 and voluntary euthanasia is considered murder under UK law. Conway’s challenge, if the court hears it, could establish strict criteria and safeguards for terminally ill adults to make their own decisions about ending their lives.

It is hoped the claim, formally against the Ministry of Justice, will be heard early this year. Before his illness, Conway, who taught social sciences and is married with children, enjoyed hiking, cycling and traveling. His deteriorating condition means, however, that his ability to move, dress, eat and deal with personal care independently has diminished. He is already dependent on a ventilator to breathe overnight.

“I have motor neurone disease. It is incurable and terminal. It is a muscle-wasting disease and I am now heading for its final stages when I face not being able to move at all. This prospect is terrifying and the amount of suffering unimaginable,” he said.

“Current law means that I will have no control of how my life ends and I will have to endure this nightmare for as long as it takes. As someone who has always been in control of his life and taken responsibility for himself, I find this quite unacceptable. I want to change the law to allow assisted dying so that I can be in control of my own death.

“If I let nature take its course, I could effectively become entombed in my own body as my ability to move and communicate continues to diminish, or I may die by suffocation or choking. I could bring about my death by refusing my ventilator, but then there is the unbearable uncertainty of not knowing how long it would take and no guarantee that my distress and pain could be adequately managed.”

Conway said he had considered traveling to a suicide clinic in Switzerland, but that it would be expensive and he did not wish to “die in a faceless clinic, away from my home and without my loved ones”.

Sarah Wootton, the chief executive of Dignity in Dying, said: “Noel’s experience sadly echoes that of hundreds of other terminally ill people in this country. Choice and control at the end of life are rights that everyone should be able to exercise and it is a tragic failure of our laws that Noel and others are being denied them.

“Despite overwhelming public support for assisted dying, our government has failed to act and is ignoring the pleas of terminally ill people. Britain is being left behind as jurisdictions around the world implement compassionate laws allowing dying people the choice and control they deserve.”

Yogi Amin, a partner and head of public law at Irwin Mitchell, said: “Noel is an extremely brave and proud man who is supported by his loving family. He would like the choice to be able to die with dignity. The world has changed phenomenally in the past few decades with many medical advances, but the law on assisted dying for those who are terminally ill hasn’t changed for more than 50 years.”

The supreme court dismissed a case brought in 2012 by Tony Nicklinson, who suffered from paralysis after a stroke. The judges recommended that parliament should debate the issue before the courts made any decision to change the law.

Nicklinson died days after the verdict but his widow, Jane, went on to take the case to the European court of human rights where it was again defeated in 2015 on the grounds that it was for national parliaments to decide on such a sensitive issue.

The Inter-Faith Dignity in Dying (IFDiD) group involving Christian and Jewish clergy who support a change in the law supports Conway’s case. “We hold that being religious is not just about respecting life, but also about knowing when to let go,” said Rabbi Dr Jonathan Romain, IFDiD’s chair. “A religious perspective includes the right to die as well as possible, rather than be forced to endure unnecessary suffering.”

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