Since the introduction of the Human Rights Act 1998, there have been several attempts to challenge unjust laws, policies, and practices governing end-of-life care. In recent years, MDMD has been at the forefront of these efforts, and has supported our members Omid T, Phil Newby, and Paul Lamb through their attempts to challenge the law on assisted dying and secure a right to die with dignity.
Diane Pretty was diagnosed with motor neurone disease in 1999. Rather than endure the final stages of a drawn-out and unpleasant death, she wanted the ability to end her life on her own terms. However, because she was paralysed from the neck down, she needed help from her husband to die. The problem was that whilst suicide wasn’t a crime, having her husband help her was – and he would have been at risk of prosecution. In response, Diane took the Government to court challenging the UK’s ban on assisted dying for violating her human rights.
When the UK’s highest court considered her case, they ruled against her. Although the House of Lords expressed sympathy for Diane’s situation, it ruled that a right to life (Article 2 of the European Convention on Human Rights) did not encompass a right to die, and a right to a private life (Article 8 of the European Convention on Human Rights) only covered how someone chooses to live, rather than die.
Diane appealed the judgment to the European Court of Human Rights, who in a seminal ruling partially accepted her argument. Unlike the House of Lords, it held that a right to a private life evoked considerations about an individual’s quality of life as well. Therefore, since the law prevented Diane from avoiding an undignified and distressing end of life, the court refused to rule out the possibility of it violating her human rights under Article 8 of the European Convention on Human Rights. However, it went on to temper its judgement, by ruling that although Diane’s human rights had been breached in principle, the UK could still legally justify its ban in order to protect the most vulnerable.
Tragically Diane died two weeks after the European Court’s decision, following breathing difficulties. At the time her husband said ‘Diane had to go through the one thing she had foreseen and was afraid of – and there was nothing I could do to help’.
A full copy of the House of Lords’ judgment can be found here.
A full copy of the European Court of Human Rights’ judgment can be found here.
In 2009 Debbie Purdy, a former music journalist suffering from the incurable condition multiple sclerosis, successfully challenged the law on assisted dying. At the time of Debbie’s case, there were no specific guidelines on when someone would or would not be prosecuted for helping another person to end their life. Knowing that she would eventually die in a distressing manner, she wanted to die with dignity by travelling to Switzerland. But she would have needed her husband to help her.
The core of Debbie’s legal challenge was whether the existing law (under the Suicide Act 1961) was too unclear for her to predict accurately if her husband would be prosecuted for helping her travel to Switzerland at some point in the future. She alleged that the vague nature of the law breached her human rights to a private and family life (Article 8 of the European Convention on Human Rights).
In a landmark and unanimous decision, Debbie won her case. Although, the House of Lords stopped short of declaring the law against assisted dying as entirely invalid, it ruled that because the Director of Public Prosecutions had not specified under which circumstances and when someone would be prosecuted for helping another to die, the law did breach Debbie’s human rights by lacking a sufficient degree of clarity.
Shortly following Debbie’s case, the then Director of Public Prosecutions, Sir Keir Starmer MP, issued guidance on factors indicating when a prosecution will and will not be brought for assisting another to die – which remains valid today. Yet, despite her success, Debbie eventually decided in 2013 that she wanted to end her life without her husband risking imprisonment – meaning she chose to starve herself to death.
Debbie had been a strong proponent of an inclusive right to die and criticised efforts in Parliament to change the law only for people with six months left to live. In one of Debbie’s last interviews, she advocated for a change in the law to help both those who are terminally ill and facing intolerable suffering, saying reform for only those ‘within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb [and] the people whose cases have all been public… [we] all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest’.
Tony Nicklinson, Paul Lamb, and Martin’s 2014 combined legal case is the most authoritative statement of law on assisted dying in England and Wales. Although it did not ultimately succeed in its aim of changing the law, it sparked a nationwide debate which radically changed attitudes towards assisted dying for the intolerably suffering, and left a legacy that our campaign continues to fight for.
Tony Nicklinson was a 58-year-old father of two, who became paralysed following a sudden stroke in 2004. His condition (locked-in syndrome) left him dependent upon round-the-clock care for almost every aspect of his life and in a state of constant pain. Knowing that he had no prospect of improvement, Tony was determined not to spend the rest of his life in a state of increasing misery. In 2012, he challenged the UK’s laws on assisted dying by arguing that doctors should have a defence in law for helping him die, and that the current law breached his rights to a private and family life (Article 8 of the European Convention on Human Rights). Unfortunately, the High Court ruled against Tony – removing his sense of hope, and prompting him to decide he could no longer bear his suffering. As a result, Tony started to refuse food and water and died 6 days later.
In honour of his legacy, his wife, Jane, continued Tony’s case through the later stages of the judicial process alongside Paul Lamb, another man paralysed from the neck down. They also argued that the ban on assisted dying was incompatible with Paul Lamb’s human right to a private and family life under the European Convention on Human Rights.
Martin, whose identity was concealed for legal reasons, was also almost completely unable to move and wanted to end his life by travelling abroad. Unlike Tony Nicklinson and Paul Lamb, Martin argued that the Director of Public Prosecutions’ Guidelines on assisted dying were still not clear enough for healthcare professionals to know if they could provide assistance without risking prosecution.
In what is still the UK’s leading authority on assisted dying, the UK Supreme Court ruled in 2014 against Jane Nicklinson, Paul Lamb, and Martin. Whilst at least two judges (including the later President of the Supreme Court) supported Paul Lamb’s case and would have immediately issued a declaration of incompatibility, a five-four majority thought Parliament should be given an opportunity to consider amending the law before making a definitive judgment. Importantly, some of the judges chose to provide guidance on how legislation might work and clearly rejected limiting a right-to-die for only those with six months left to live. In Martin’s case, the court ruled that the Director of Public Prosecutions should review the written policy on assisted dying, and indicated that it could take further action if necessary, but stopped short of declaring the guidance invalid or directing the Director of Public Prosecutions to change them.
A full copy of the judgment can be found here: https://www.bailii.org/uk/cases/UKSC/2014/38.html
Noel Conway was a former lecturer who was diagnosed with motor neurone disease in 2014. His degenerative condition required him to use an artificial ventilator to breathe. In 2017, he launched the first assisted dying legal case which aimed to specifically only help people with six months left to live.
Noel argued that the law banning assisted dying was incompatible with his human rights to a right to a private and family life (Article 8 of the European Convention on Human Rights). He also suggested that where previously legal cases had failed, his case would succeed because his specific focus on the terminally ill would enable him to create a limited and well-regulated assisted dying law. In particular, Noel said that assisted death should only be available to someone who was: 18+ years old, terminally ill (meaning they had less than six months to live), reached a voluntary, clear, and settled decision, and obtained permission from the High court to end their life.
However, the Court of Appeal rejected his case. The court acknowledged that a lengthy history of legal cases had well-established that a ban on assisted dying infringed someone’s human rights to a private life. However, it decided that the law could continue to be justified on the basis that it secured the legitimate aims of protecting vulnerable people. Beyond this, the court also expressed several concerns about the feasibility of Noel’s proposed scheme, including whether it would be possible ever to accurately predict when someone had six or fewer months left to live.
The Supreme Court also refused Noel Conway permission to appeal the Court of Appeal’s judgment. In doing so, our highest court seemed to provide two alternative explanations for its decision. One possible reason was that the contentious nature of assisted dying meant that no right-to-die cases could be legitimately resolved by the courts, instead of by Parliament. The other possible explanation was that because Noel could already end his life, by legally removing his artificial ventilator, the tragic circumstances of his case were the wrong set of facts upon which to consider changing the law. In other words, his case would have been too limited, because it would have failed to help those intolerably suffering who lack a legally dignified means of bringing about their death.
A full copy of the Court of Appeal’s judgment can be found here:
https://www.judiciary.uk/wp-content/uploads/2018/06/conway-judgment-27062018.pdf
A full copy of the Supreme Court’s permission decision can be found here:
Omid T was a vocal and active member of My Death, My Decision until 2018, when he travelled to Switzerland and ended his life after years of suffering.
The Iranian-born father of three had been diagnosed in 2014 with a rare neurological condition – Multiple Systems Atrophy – which left him virtually unable to speak or move . Three years later, prompted by support from Tony Nicklinson’s family, Omid launched a legal bid which tried to convince the courts to examine an extensive body of international evidence and declare the UK’s ban of assisted dying incompatible with his human rights.
Shortly before the High Court was expected to rule on whether Omid had permission to bring a case, Omid’s condition rapidly deteriorated. Fearing that if he lost, he might become physically incapable of travelling to Switzerland, Omid decided to end his life abroad before the court gave its judgment – ultimately leaving his case unresolved.
Notably, when the High Court eventually delivered its decision, it ruled that Omid’s case wouldn’t have been able to proceed anyway. The court fundamentally rejected the notion that concerns over the protection of vulnerable people could be resolved by examining international evidence, and instead held the issues came down to questions of judgement and opinion – not fact.
Omid had been a prominent supporter of My Death, My Decision’s campaign for an inclusive law on assisted dying. His case was widely supported and more than £34,000 was raised from members of the public to support it. When discussing his case he said ‘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.’
Phil Newby is a terminally ill man, suffering from motor neurone disease, who tried to bring a successor legal case to Omid T. This meant that Phil argued that the law which makes it a criminal offence for people to end their own lives was incompatible with his human rights. Unusually, his challenge attempted to invite the courts to undertake a detailed examination of the evidence from abroad.
Unfortunately, the Court of Appeal was unpersuaded by Phil’s arguments and refused it a full hearing. In particular, the court ruled that it could not adequately weigh up the fundamental conflict assisted dying posed between a right to autonomy and a duty to protect life based on ‘facts’ alone. Instead, it said that the matter should be resolved by Parliament.
My Death, My Decision was among the first organisations to champion Phil’s case and helped to raise awareness and more than £48,000 in public donations to make the case possible.
A full copy of Phil Newby’s letter before claim can be found here.
Paul Lamb, a former builder from Leeds, was paralysed from the neck down following a car accident in 1990. He is a patron of My Death, My Decision and a passionate campaigner for a change in the law to enable those who are either intolerably suffering or terminally ill to have the option of an assisted death.
In 2019, five years after his landmark Supreme Court assisted dying case, he launched a fresh legal bid to challenge the law prohibiting assisted dying. Paul lives in constant pain and is dependent upon around the clock care for almost every aspect of his life. He argued that, because he is physically unable to end his life without assistance, the law discriminated against him by forcing him to have a less dignified death than people without a disability. Therefore, he argued the current law violated his human rights protections against discrimination (Article 14 of the European Convention on Human Rights) and his right to a private life (Article 8 of the European Convention on Human Rights).
Disappointingly, the Court of Appeal refused Paul permission to bring a full case and instead ruled that the issue of assisted dying should be resolved by Parliament and not the courts. As a result, commentators have suggested that Paul Lamb’s case has now effectively brought a close to the possibility of future legal challenges on assisted dying for the foreseeable future.
