right to die
11 July 2024 by Guest Contributor
Introduction
The applicant in the ECtHR case of Karsai v Hungary, Mr Karsai, a 47-year-old human-rights lawyer who lives in Budapest, was diagnosed in 2022 with amyotrophic lateral sclerosis (ALS) – a neurodegenerative disease that causes a progressive loss of motor neuron function leaving the patient completely paralysed, while preserving intellectual function. Mr Karsai maintains that “he will be “imprisoned in his own body without any prospect of release apart from death” and his existence will consist almost exclusively of pain and suffering” (§14). Mr Karsai applied to the ECtHR arguing that the prohibition on assisted dying under Hungarian law violated his right to private life (art. 8 ECHR); the applicant also complained the violation of his right to private life in conjunction of his right not to be discriminated against (art. 14 ECHR) because the Hungarian law offers the option of withdrawal of invasive medical treatments (and, hence, hasten their death) only to terminally ill patients who are dependent on them.
Article 8
Regarding the potential violation of the applicant’s right to privacy, his primary argument centres on his desire to control the timing of his death. Due to his medical condition, he is condemned to a life of physical incapacity, pain, and existential dread. The applicant dismisses palliative care as a viable option: “While palliative care could provide relief with respect to certain aspects of his physical suffering, it could not provide relief from the experience of existential dread” (§91). Instead, he focuses on the fact that he cannot avail himself of assisted suicide provisions either in Hungary or abroad. Hungarian law prohibits assisting a patient in procuring their death, and even those aiding with arrangements for this purpose can face prosecution (§§135; 159).
The Court observed that, due to the lack of a uniform consensus among member states on assisted dying practices, each state is granted a considerable margin of appreciation in implementing policies on such sensitive issues. The court also noted, as the recent case of Mortier v. Belgium held, that the right to life (art. 2 ECHR) does not inherently exclude the decriminalisation of assisted dying. However, this decriminalisation must be accompanied by safeguards to prevent abuses of the right to life (§§126-128; 145).
The Court, finding no violation of art. 8, held that Mr Kasai’s suffering could not dismissed lightly. It noted that the applicant’s complaint mainly focused on “existential suffering” that “although it amounts to genuine and severe anguish, existential suffering relates essentially to a personal experience, which may be susceptible to change and does not lend itself to a straightforward objective assessment” (§158). Furthermore, the Court acknowledged that “existential suffering may be refractory to medical treatment […] and that the use of sedation to alleviate it might be contested or unwarranted in certain situations […]” (§157). Professor Aubry, one of the experts consulted by the Court, emphasised two key points. First, he noted that patients suffering from the same condition as the applicant often exhibit ambivalence about their desire to die as the disease progresses. Second, he underscored the importance of palliative care for individuals affected by ALS, particularly in advanced stages, when they are typically permitted to receive palliative deep sedation and can die peacefully (§46).
Article 14
Regarding the violation of art. 8 ECHR and art. 14 ECHR the Mr Karsai argued that “Hungarian law accorded different treatment to those terminally ill persons with mental capacity who suffered from refractory symptoms but could hasten their death only by means of PAD [physician assisted dying], and those who could do so by having recourse to RWI [refusal or withdrawal of life-sustaining interventions” (§170).
In this case the Court held that the applicant’s clinical picture could not be compared to that of terminally ill patients who depend on life-sustaining medical treatments (§174). In fact, Mr Kasai’s diagnosis might lead to invasive life-sustaining interventions only towards the latest stages of his degenerative illness. Furthermore, the withholding or withdrawing of unwanted medical treatments falls within the right to informed medical consent and it is subjected to specific guidelines and safeguards in order to protect the patient’s autonomy (§175).
According to Professor Sandor, who produced an expert opinion for the Court, the right to informed consent is paramount in bioethics. On the other hand, “patients could refuse care, but could not ask for something specific” (§56). For these reasons the Court held that there has been no violation of art. 14 in conjunction with art. 8 of the Convention.
Separate opinions
Two judges’ separate opinions provide an opportunity to delve deeper into the reasoning of the Court’s majority, as they both address the fundamental principles underlying the final decision. Judge Wojtyczek in his separate concurring opinion disagreed with the majority that the applicant’s request to have access to physician assisted dying would fall under his right to respect his private life. The judge emphasised how the right to life – as the practical and effective basis for the enjoyment of all other rights – may hardly “encompass decisions about one’s own life and death” and for this reason, the right to private life, should not extend to the choice of death (§4, Judge Wojtyczek partly concurring, partly dissenting opinion). He noted that the suffering stemming from a personal feeling in relation to the absence of meaning of life may be exacerbated (or not properly tackled) if people can choose their own death.
Judge Felici, dissenting on both accounts with the Court’s majority, firstly emphasised his impression that “the applicant’s legitimate concerns were not taken into account, and that his legitimate request for help fell on deaf ears” (§7, Judge Felici dissenting opinion). In fact, according to Judge Felici, palliative care could not be considered a feasible option to ease the applicant’s suffering since “the expert consulted have indicated that there is currently no medical treatment capable of alleviating existential suffering” (§9, Judge Felici dissenting opinion, my emphasis). In other words, the dissenting Judge stressed an evident reality: so far medicine has not been able to offer a cure to the sentiment that life has lost its meaning. And, for this reason, assisted dying is envisaged as the only possible answer to the applicant existential cry for help. Consequently, the dissenting judge finds that the impossibility for the applicant to avail himself of assisted dying provisions both in his country and abroad would breach his right to privacy enshrined by art. 8 of the Convention.
Specifically, Hungary – compared to other member states which permit assisted dying or are paying great attention on the matter – would have failed to address the severe suffering of the applicant (§5, Judge Felici dissenting opinion). Therefore, Judge Felici dissented that in this instance the margin of appreciation doctrine (which applies on sensitive matters where there is no uniform agreement) should not be invoked. Giving that, “there are no insurmountable legal obstacles to affirming a positive obligation on the part of the State, having regard to all the characteristics of this case, in relation to the application of Article 8 of the Convention” (§6, Judge Felici dissenting opinion).
Secondly, the Judge disagreed with the Court majority’s decision according to which the applicant’s medical condition should be considered similar to the one endured by terminally-ill patients subjected to invasive life-sustaining medical treatments since Mr Kasai’s condition has made him dependant on others for all his personal needs. Hence Judge Felici argued that “the subordination of the decision to take one’s life to whether one is dependent on life-saving treatment represents an unnecessary reduction of the protection of the right to life and an interference in private life, understood as the individual’s capacity for self-determination” (§13, Judge Felici dissenting opinion).
Dr Ilaria Bertini is a Research Fellow at BIOS Centre
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22 March 2019 by Rosalind English
Update:
Today (21 March) the Royal College of Physicians (RCP) has dropped its opposition to assisted dying and moved to neutrality. The RCP has opposed assisted dying since 2006 but has now brought its position in line with the range of views held by its members, and with the 82% of the public who want greater choice at the end of life. Today’s result is a great victory for patients and for the campaign group Dignity in Dying. Their full press release can be found on their website and a breakdown of the results is available on the RCP website.
DID’s report has been covered by the British Medical Journal and Politics Home so far. You can read the full report here, and their press release here.
On 20 March Dignity in Dying released a report exposing the fact that those behind the legal challenge to the RCP (detailed below) have a long history of campaigning for pro-life causes and connections to American pro-life lobbyists, the Alliance Defending Freedom (ADF).
DID’s report has been covered by the British Medical Journal and Politics Home so far. You can read the full report here, and their press release here.
See our last update on these events since our podcast interview with CEO of Dignity in Dying Sarah Wootton.
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26 February 2019 by Rosalind English
Update:
On 20 March Dignity in Dying released a report exposing the fact that those behind the legal challenge to the RCP (detailed below) have a long history of campaigning for pro-life causes and connections to American pro-life lobbyists, the Alliance Defending Freedom (ADF).
DID’s report has been covered by the British Medical Journal and Politics Home so far. You can read the full report here, and their press release here.
In January we published episode 63 of Law Pod UK featuring Sarah Wootton, Chief Executive of Dignity in Dying. DID campaigns for a change in the law to allow doctors to prescribe lethal drugs for terminally ill people to hasten their own death in specific situations. Sarah referred in that interview to a poll that was about to be conducted of the members of the Royal College of Physicians, who have hitherto opposed assisted dying. The members are being asked whether they individually support a legal change to permit assisted dying, and what they think the RCP’s position should be. The RCP has said that it will move to a neutral position unless at least 60% of votes in a poll being sent out in the first week of February are either in favour of or opposed to a change in the law. The results will be announced in March but the poll has had a bumpy ride, including a threat of judicial review by one of its members for conducting the exercise as a “sham poll with a rigged outcome.” The Christian charity Duty of Care has called for signatures from doctors and medical students to a petition objecting to the poll.
While that has been going on, DID has supported the family of a man suffering from motor neurone disease. On 7 February Geoff Whaley travelled to Dignitas in Switzerland to end his life.
Before he died, Mr Whaley wrote an open letter all MPs to impress upon them the need for a change in the law after his wife was reported to the police, in an anonymous phone call, as a person potentially assisting someone to end their life. The Whaley’s MP Cheryl Gillan raised the family’s story in the Commons during Business of the House.
Geoff [and his wife] had to suffer the added mental anguish of facing a criminal investigation at a time when the family, and most of all Geoff, wanted to prepare his goodbyes and fulfil his last wish in peace. May I ask the Leader of the House if we can have a debate in Government time so that we can re-examine this area of law, particularly in the light of this amazing man’s efforts to give terminally ill people a choice over the way they leave this world, and to afford protection to their loved ones?
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26 February 2019 by Rosalind English
Ninan v Findlay and others [2019] EWHC 297 (Ch), 21 February 2019
The claimant, Mrs Ninian, is the sole beneficiary of the residue of the estate of her late husband Mr Ninian under his will. Mr Ninian, who suffered from a progressive incurable disease, died on 16 November 2017 with the assistance of Dignitas in Switzerland. Mrs Ninian was with him throughout the trip to Switzerland, his assessment by representatives of Dignitas and the occasion of his suicide.
Shortly before the trip to Dignitas, Mrs Ninian applied for relief against forfeiture under section 2 of the Forfeiture Act 1982 on the basis that steps taken by her may have amounted to encouraging or assisting her husband to commit suicide which brought in play the forfeiture rule.
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25 July 2017 by Rosalind English
Great Ormond Street Hospital v Yates and Gard – [2017] EWHC 1909 (Fam) – read judgment
“A lot of things have been said, particularly in recent days, by those who know almost nothing about this case but who feel entitled to express opinions. Many opinions have been expressed based on feelings rather than facts.”
So said Francis J, when dealing with an unusual application by Great Ormond Street Hospital (Gosh) asking for an order, rather than a declaration, that Charlie Gard should be allowed to slip away quietly. The involvement of the White House, the Vatican, the Bambino Gesu Children’s Hospital in Rome and Dr. Hirano and the associated medical centre in the USA in this story demonstrates the fact that a mere declaration carries too much ambiguity to allow the hospital staff to do what the courts have approved. The terms in which Gosh put its application were unambiguous indeed:
Therefore orders are sought to remove any ambiguity; orders are enforceable. Despite all of the hospitals best endeavours, this appears as potentially necessary. Not for the first time the parents through their solicitors raised the prospect of criminal proceedings against the hospital and its staff. The Hospital understands that no court order best interests proceedings can afford it or its staff from prosecution.
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13 April 2017 by Rosalind English
Conway, R(on the application of) v The Secretary of State for Justice[2017] EWCA Civ 275
The Court of Appeal has overturned the refusal of the Divisional Court to allow a motor neurone disease sufferer to challenge section (1) of the Suicide Act. He may now proceed to seek a declaration under section 4(2) of the Human Rights Act 1998 that the ban on assisted dying is incompatible with the European Convention on Human Rights. The background to this appeal can be found in my post on the decision from the court below, which focussed on the vigorous dissent by Charles J.
Briefly, Mr Conway wishes to enlist the assistance of a medical profession to bring about his death in a peaceful and dignified way at a time while he retains the capacity to make the decision. His family respect his decision and choices and wish to support him in every way they can, but his wife states she would be extremely concerned about travelling to Switzerland with Mr Conway so he can receive assistance from Dignitas.
The main argument in support of the permission to appeal was that it was self-evident from the division of opinion in the Divisional Court that there would be a realistic prospect of success. Mr Conway’s legal team also argued that the issues raised about Mr Conway and those in a similar position to him were of general public importance and that this was a compelling reason for the appeal to be heard.
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2 April 2017 by Rosalind English
Conway, R (on the application of) v Secretary of State for Justice [2017] EWHC 640 – read judgment
Noel Douglas Conway, 67, is a victim of motor neurone disease. He has just been refused permission to seek judicial review of the criminalisation of physician-assisted suicide under the Suicide Act 1961. The High Court considered that Parliament has recently examined the issue following the Supreme Court decision in the 2014 Nicklinson case , and two out of three judges concluded that it would be “institutionally inappropriate” for a court to declare that s.2(1) of the Suicide Act was incompatible with the right to privacy and autonomy under Article 8 of the ECHR. Charles J dissented (and those who are interested in his opinion might want to look at his ruling last year in the case of a minimally conscious patient).
Background facts and law
The claimant, whose condition worsens by the day, wishes to enlist the assistance of a medical professional or professionals to bring about his peaceful and dignified death. But Section 2(1) of the Suicide Act criminalises those who provide such assistance. The question of whether someone would be prosecuted for assisting suicide is governed by a detailed policy promulgated by the Director of Public Prosecutions. That policy was formulated in 2010 in response to the decision in R. (on the application of Purdy) v DPP [2009] UKHL 45, and was refined in 2014 following the decision of the Supreme Court in Nicklinson. A similar declaration of incompatibility had been sought in Nicklinson, but by a majority of seven to two the court refused to make the declaration on the grounds that it was not “institutionally appropriate” to do so. The court, however, encouraged Parliament to reconsider the issue of assisted dying.
In the instant case, the court had to determine whether the circumstances which led the Supreme Court to refuse to grant the declaration in Nicklinson had changed so that a different outcome was now possible.
The Court concluded – with an interesting dissent from Charles J – that this was a matter for parliament. A declaration of incompatibility would be institutionally inappropriate in the light of the recent Parliamentary consideration of Nicklinson. The claim was unarguable and permission was refused.
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10 September 2015 by Fraser Simpson
Ross, Re Judicial Review, [2015] CSOH 123 – read judgment
The Outer of House of the Court of Session has refused an individual’s request for clarification of the prosecution policy relating to assisted suicide in Scotland.
by Fraser Simpson
Factual Background
The Petitioner, Mr Ross, suffers from Parkinson’s disease and currently resides in a care home due to his dependence on others. Although not wishing to currently end his life, Mr Ross anticipates that in the future he will wish to do so and will require assistance.
In July 2014, the Petitioner requested from the Lord Advocate – the head of the prosecution service in Scotland – guidance on the prosecution of individuals who assist others to commit suicide. The Lord Advocate replied that such cases would be referred to the Procurator Fiscal – the Scottish public prosecutor – and dealt with under the law of homicide. The Lord Advocate further stated that decisions regarding whether prosecution would be in the public interest would be taken in line with the published Crown Office and Procurator Fiscal Service Prosecution Code (“COPFS Code”). However, he admitted that it would often be in the public interest to prosecute such serious crimes as homicide.
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24 July 2015 by Laura Profumo
Laura Profumo delivers the latest human rights happenings.
In the News:
Right to die campaigners have sustained yet another setback, following the judgment of R (AM) v General Medical Council last week.
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22 July 2015 by Isabel McArdle
R (o.t.a A.M) v. General Medical Council [2015] EWHC 2096 (Admin) Read the full judgment here
The High Court has rejected the argument made by “Martin”, a man with locked-in syndrome who is profoundly disabled and wishes to end his own life. This comes shortly after Strasbourg’s rejection of the Nicklinson and Lamb cases, for which see my post here.
Philip Havers QC, of 1COR, acted for Martin, and has played no part in the writing of this post.
Martin would like to travel to a Swiss clinic to end his life, but wishes to obtain a medical report, from a doctor, to assist. He would also like to take medical advice on methods of suicide.
There is no dispute that a doctor advising him in this way will likely break the law, by committing the crime of assisting suicide. However, Martin argued that in practice, the Director of Public Prosecutions (DPP) has relaxed guidelines on when it is in the public interest to bring a prosecution against a doctor in these circumstances.
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20 July 2015 by Isabel McArdle
The European Court of Human Rights has ruled that the applications to the ECtHR in Nicklinson and Lamb v UK, cases concerning assisted suicide and voluntary euthanasia, are inadmissible.
This is the latest development in a long running series of decisions concerning various challenges to the UK’s law and prosecutorial guidelines on assisted suicide and voluntary euthanasia. You can read the press release here and the full decision here.
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31 December 2014 by Rosalind English
The multiple sclerosis sufferer Debbie Purdy died in the Marie Curie hospice in Bradford on December 23 2014. Having been denied her right to travel to Dignitas in Switzerland, which would have exposed her husband to the risk of prosecution under the 1961 Suicide Act, she took the only option available to her – refusing food. Death by starvation is not pleasant. The relevant Wikipedia entry describes some of the symptoms:
The body breaks down its own muscles and other tissues in order to keep vital systems such as the nervous system and the heart muscle functioning.
… Early symptoms include impulsivity, irritability, hyperactivity, and other symptoms. Atrophy (wasting away) of the stomach weakens the perception of hunger, since the perception is controlled by the percentage of the stomach that is empty. Victims of starvation are often too weak to sense thirst, and therefore become dehydrated.
All movements become painful due to muscle atrophy and dry, cracked skin that is caused by severe dehydration. With a weakened body, diseases are commonplace. Fungi, for example, often grow under the esophagus, making swallowing painful.
I apologise for introducing such a gloomy subject into the dying embers of 2014, but it is too important to pass by.
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2 June 2014 by Rosalind English
UPDATE | The 1COR event which this post previously referred to is now full, so please do not turn up unless you have registered.
Sheffield Teaching Hospitals NHS Foundation Trust v TH and Anor [2014] EWCOP (22 May 2014) – read judgment
In a careful and humane judgment, the Court of Protection has demonstrated that the law is capable of overlooking the stringent requirements of the conditions governing advance directives, and stressed that a “holistic” view of the patients’ wishes and feelings must be adopted, if those point to the withdrawal of life saving treatment.
Background
TH was admitted to the Northern General Hospital in Sheffield earlier this year. His general health revealed a background of known alcohol excess, and he had suffered neurological damage involving seizures and severe depression of consciousness.
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15 May 2013 by Isabel McArdle
GROSS v. SWITZERLAND – 67810/10 – Chamber Judgment [2013] ECHR 429 – Read judgment / press summary
The European Court of Human Rights has ruled that Swiss guidelines for doctors prescribing lethal drugs were too unclear and therefore breached article 8 ECHR, the right to private and family life. Ms Gross sought a prescription for a lethal drug to end her own life. She has no critical illness, but is elderly and feels that her quality of life is so low that she would like to commit suicide. The Swiss medical authorities refused to provide her with the prescription.
Assisted dying and the right to die have been firmly back in the spotlight this week, with the cases of Lamb and “Martin” going to the English and Wales Court of Appeal. Mr Lamb is taking up the point made by Tony Nicklinson in the High Court, before his death, that doctors should have a defence of necessity to murder charges in cases of assisted suicide. Mr Nicklinson’s widow, Jane, is continuing his fight too. The cases also challenge the current guidelines on when prosecution should be brought for assisting suicide. You can read more about the background to the right to die caselaw here.
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16 August 2012 by Rosalind English
The Queen(on the application of Tony Nicklinson) v Ministry of Justice [2012] EWHC 2381 (Admin) – read judgment
Lord Justice Toulson, sitting with Mrs Justice Royce and Mrs Justice Macur, has handed down judgment in the case of Tony Nicklinson and that of another “locked-in” syndrome sufferer, “Martin”. On all the issues, they have deferred to parliament to take the necessary steps to address the problems created by the current law of murder and assisted suicide.
Philip Havers QC of 1 Crown Office represented Martin in this case.
Tony Nicklinson sought a declaration of immunity from prosecution for a doctor who would give him a fatal dose of painkillers to end his life in Britain. He also sought a declaration that the current law is incompatible with his right to respect for private life under article 8, contrary to s1 and 6 of the Human Rights Act 1998, in so far as it criminalises voluntary active euthanasia and/or assisted suicide.
Martin’s claim was slightly different as his wife does not want to do anything which will hasten his death. He therefore asked for permission for volunteers to be able to help him get to the Dignitas clinic in Switzerland (under recent guidelines from the Director of Public Prosecutions only family members or close friends who are motivated by compassion are unlikely to be prosecuted for assisting a suicide). In the alternative he sought a declaration that section 2 of the Suicide Act is incompatible with the right to autonomy and private life under Article 8 of the European Convention.
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