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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.
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.
In R. (on the application of Conway) v Secretary of State for Justice [2018] EWCA Civ 1431 the Court of Appeal held that the blanket ban on assisted suicide in the Suicide Act 1961 s.2(1) was a necessary and proportionate interference with the ECHR art.8 rights of the appellant.
The appellant had proposed an alternative scheme for assisted suicide containing certain conditions and safeguards, including the approval of a High Court judge, for those who were terminally ill and had less than six months to live. However, it was held that the alternative scheme would not be effective and raised wide-ranging policy issues that would be better dealt with by Parliament.
The Court identified the origin of the case as being that the Claimant has a prognosis of six months or less to live and wishes to have the option of taking action to end his life peacefully and with dignity, with the assistance of a medical professional, at a time of his choosing, whilst remaining in control of the final act that may be required to bring about his death. However, Section 2(1) of the 1961 Suicide Act makes it a criminal offence to provide encouragement or assistance for a person to commit suicide.
Mr Conway therefore sought a declaration of incompatibility under section 4 of the HRA , on the basis that the ban on assisted suicide was a disproportionate interference with his right to respect for his private life under Article 8 of the Convention (“Article 8”).
Welcome back to the UK Human Rights Roundup, your regular festive trifle of human rights news and views. The full list of links can be found here. You can find previous roundups here. Links compiled by Adam Wagner, post by Celia Rooney.
This week, the Church of Scientology registered a win of sorts in the Supreme Court, while London’s biggest university said no to occupational student protests just as others were contemplating the possibility of gender-segregated talks Meanwhile, the Home Secretary puts forward her answer to modern day slavery, while the Joint Committee on Human Rights puts pressure on Chris Grayling regarding the proposed legal aid reforms.
We posted earlier on the Court of Protection’s refusal to declare that doctors could lawfully discontinue and withhold all life-sustaining treatment from a patient in a minimally conscious state (MCS) – “just above” a vegetative state (VS), which itself is slightly higher than a coma – read judgment.
The message underlying this ruling is clear: if you want to avoid the risk of spending years of your life subject to aggressive medical intervention whilst imprisoned in a cage of bare-consciousness, make a living will. The Mental Capacity Act is remorseless, and courts will no longer come to the aid of those of us optimistic enough to think “it will never happen”.
We do not tend to think specifically about ending up in state of total dependency on medical support and therefore there is very little likelihood of any significant section of the population making a formal advance decision in accordance with the Act. On the other hand, how many of us have said, as patient M said in this case, that if such a situation were to arise, we would want to “go quickly”? [para 230]
Such generalities however are to no effect. Despite the universal human instinct to live in denial of contingent disasters, the court refused to give due weight to M’s previously expressed wish not to live a life dependent on others, because those these statements were not “specifically directed” at the consequences of withdrawing artificial nutrition and hydration (ANH) when conscious. Baker J could not consider those statements as a clear indication some eight years on from the onset of her illness, of what M would now want to happen.
M and others v NHS Primary Healthcare Trust – read judgment
For the first time the courts have been asked to consider whether life-supporting treatment should be withdrawn from a patient who was not in a persistent vegetative state (PVS) but was minimally conscious. The patient’s family sought a declaration for the withdrawal of artificial nutrition and hydration withdrawn and said the woman, referred to as M in court, would not want to live “a life dependent on others”. Continue reading →
Today’s decision by the European Court of Human Rights marks the end of what has been a very difficult process and our priority is to provide every possible support to Charlie’s parents as we prepare for the next steps.
The Strasbourg Court by a majority endorsed in substance the approach by the UK courts, saying that they had been “meticulous” in their reasoning. It is likely that Charlie’s life support will now be withdrawn and he will be given palliative care only.
Following the Strasbourg Court’s request for interim measures for the UK – which means the hospital may not take Charlie Gard off life support as the Supreme Court has allowed it to do – the Supreme Court arranged a short hearing to take place Monday 19 June, to give directions. The Strasbourg Court has now put in place a further request that treatment and nursing care be continued beyond its original deadline of 19 June (see the press release from Strasbourg here: Gard and Others v. the UK). This is because that Court has to consider the parents’ application that the case does not just concern Charlie’s right to die with dignity but their rights under Article 8 as his parents to be afforded respect for their decisions as to what is in Charlie’s interests.
This is a unique situation facing the Supreme Court, and, probably, the judges of the European Court of Human Rights. As the UK court acknowledges, by granting a stay, even of short duration, it would “in some sense” be complicit in directing a course of action which is contrary to Charlie’s best interests, since this was its last word on the matter. It is no wonder that this is causing some soul-searching. The Strasbourg Court’s interim measures order is directed at the government, not Great Ormond Street Hospital or its doctors. The latter won a ruling from the Supreme Court that they should remove life support from Charlie Gard because it is considered to be in violation of his right to die with dignity, and, of course, not in his best interests. Continue reading →
The Sunday Times, now committed to its campaign to change the law on assisted dying, has shared the story of Len and Karen Williamson, who spent £45,000 travelling to Switzerland with the assistance of private ambulances and a private flight, in order for Karen to elect the timing of her own death. Physician assisted suicide remains illegal in the UK, with the Suicide Act 1961 (which simultaneously legalised suicide) rendering liable those who aid, abet or procure the suicide of another to fourteen years’ imprisonment. Repeated challenges have been made against this law, with the most prominent being the leading case of Nicklinson & Anor R (on the application of) (Rev 1) [2014] UKSC 38. A nine-judge Supreme Court rejected the application of Tony Nicklinson, who was paralysed from the neck down and who described his life as a ‘living nightmare’, refusing to issue a declaration of incompatibility under s.4 of the Human Rights Act (see Rosalind English’s post on that decision.) This would have rendered the blanket ban on physician assisted suicide incompatible with the article 8 right to private and family life. Instead, the court expressly left the difficult decision up to Parliament. Since then, the Supreme Court has reaffirmed its position in the case of Noel Conway. Conway’s earlier Court of Appeal decision was considered in full on the UK Human Rights Blog.
Now, there appears to be some new hope for advocates of the right to die, a movement which (where the terminally ill are concerned) is supported by over 90% of the UK population. Baroness Meacher’s Assisted Dying Bill has now reached its second reading in the House of Lords, though it has a long way to go yet. The new Bill would permit attending doctors to provide medicines that would bring about the end of the lives of patients with a committed wish to die, where they are mentally competent and within six months of natural death. They would not be permitted to administer the medicines themselves (potentially leaving out individuals with locked-in syndrome who are not able even to swallow). Parliamentary intervention, strongly recommended by the Commission on Assisted Dying in 2012, would go some way towards curing the unprincipled approaches the courts have been forced to take in tragic cases such as Airedale NHS Trust v Bland [1993] UKHL 17 and A (Children), Re [2000] EWCA Civ 254, two cases which legalised the removal of life support by doctors, and the killing by separation of conjoined twins whose lives are parasitic upon and deadly for their stronger siblings, respectively.
Laura Profumo serves us the latest human rights happenings.
In the news:
Lurid show-trial of a vulnerable man, the timely vindication of justice being done, and being seen to be done, a CPS volte-face.
Whatever you think of the Janner trial, it’s now in full swing. The former Labour Peer made his first appearance in court on Friday, facing 22 historic child sex abuse charges. The 87 year old’s committal hearing lasted some 59 seconds, after weeks of legal grappling with his defence lawyers. Any doubt over Janner’s dementia was “dispersed instantly” by his arrival, writes The Telegraph’s Martin Evans: flanked by his daughter and carer, Janner appeared frail and “confused”, cooing “ooh, this is wonderful” as he entered the courtroom. The case will now pass to the Crown Court, with the next hearing due on September 1, where a judge will decide whether the octogenarian is fit to stand trial, or whether a trial of fact is a suitable alternative. If the latter course is taken, a jury will decide if Janner was responsible for his charged actions – no verdict of guilt will be found, and no punishment will be handed down. Continue reading →
If a terminally ill patient has made a “living will”, specifying in advance that they do not want to be resuscitated, doctors must respect these wishes or risk being struck off. The General Medical Council is to announce this guidance in response to the Mental Capacity Act 2005 which gives “living wills” legal status. Doctors must not follow their own personal or religious convictions by prolonging treatment unless there is evidence that a patient may have changed his or her mind.
Update 25/05/10 – The Guidance has been published and can be found here
If a doctor is unwilling to follow the express verbal instructions of a patient – communicated through a friend or relative as legal proxy — they can withdraw from treating the individual. A second medical opinion must sought before hydration and nutrition is withdrawn. Telegraph Medical Correspondent Kate Devlin reports that
Doctors who flouted the guidelines would be forced to attend a fitness to practise hearing before the GMC and would be struck off if the case against them were proved. The rules affect patients deemed to be mentally capable of making these decisions. If they do not have this capacity, or have not designated someone to act on their behalf, doctors are required to make any judgment about treatment in the best interests of the patient. The guidance says that in these cases, when the decision over end of life treatment is “finely balanced”, the patient’s previously stated wishes “will usually be the deciding factor”.
Updated x 2 | A 20-year-old has been sent to prison for twelve weeks for posting offensive and derogatory comments about missing five-year-old April Jones on his Facebook page. His attempts at humour were undoubtedly stupid, offensive and exhibited incredibly poor taste and timing. But is a long spell in prison really the way we should be dealing with offensive idiots? Is a law which was passed before social media existed now placing a significant chill on our freedom of expression rights?
Matthew Woods pleaded guilty to an offence under s.127 of the Communications Act 2003, which prohibits a person sending “by means of a public electronic communications network a message or other matter that is grossly offensive or of an indecent, obscene or menacing character“. He was sentenced at Chorley Magistrates’ Court.
King’s College Hospital NHS Foundation Trust v C and another [2015] EWCOP 80 read judgment
A woman who suffered kidney failure as a result of a suicide attempt has been allowed to refuse continuing dialysis. The Court of Protection rejected the hospital’s argument that such refusal disclosed a state of mind that rendered her incapable under the Mental Capacity Act. An adult patient who suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment. Continuation of such treatment is unlawful, even if the refusal seems irrational to others. As the judge said, this rule
reflects the value that society places on personal autonomy in matters of medical treatment and the very long established right of the patient to choose to accept or refuse medical treatment from his or her doctor (voluntas aegroti suprema lex). Over his or her own body and mind, the individual is sovereign (John Stuart Mill, On Liberty, 1859).
The Trust’s further application to be allowed to restrain C “physically or chemically” from leaving the hospital where she was receiving the dialysis was therefore rejected.
Background facts
The coverage of this case reflects a certain level of social disapproval. “Right to die for socialite scared of growing old” – “Socialite allowed to die was terrified of being poor” run the headlines. Behind them lurks an essentially religious consensus that people should not be allowed to opt out of senescence and its associated poverty and suffering, such matters being for God alone. There is also a measure of censoriousness behind the details brought to court regarding C’s attitude to motherhood and men, the news that she had breast cancer, her love of “living the high life” and her dread of growing old “in a council house”. Continue reading →
An editorial article published in the British Medical Journal on 12 July 2012 (subscription required) has provoked controversy in right-to-life circles. The article, entitled “Sanctity of life law has gone too far” criticises the ruling of Baker J in the “M” case where an application to authorise the removal of artificial nutrition and hydration (ANH) from a patient in a minimally concscious state was refused. This blog reported on the M judgment in September 2011 here, here and here.
The author of the BMJ article, Dr Raanan Gillon, Emeritus Professor of Medical Ethics at Imperial College London (who describes himself as “a hybrid GP and philosopher”) takes Baker J to task for not according significant weight to the informally expressed views of M on life-sustaining treatment, expressed before she came ill. More widely, Dr Gillon questions the implications of the judgment for decisions about the best interests of patients whose state of consciousness is higher than minimal. Most controversial of Dr Gillon’s comments is likely to be his conclusion on the resource implications of the approach to best interests of incapacitated patients, which is put in the following terms:
COVID-19 has changed many things about society, and one of the most significant is the erosion of the taboo surrounding death. After all, we have daily bulletins on death figures. As Dignity in Dying Sarah Wootton says, in her forthcoming book “Last Rights”,
The coronavirus pandemic has thrust death and dying into the mainstream.
This sensitive and compassionate judgment by Hayden J following a remote hearing of the Court of Protection is therefore worth our attention, as we all become more aware of how acutely things slip out of our control, not least of all our health.
The application from the Trust concerned a 34-year-old man (MSP) who has had significant gastrointestinal problems for approximately 10 years, requiring repeated invasive surgery. At the time of the hearing he was unconscious and on life support in ICU. The issue framed in the application was whether the Trust should continue to provide ITU support or withdraw treatment other than palliative care.
Between 2013 and 2020 MST underwent significant abdominal surgery and had a stoma inserted in 2018. The court noted that he “utterly loathed” life with a stoma. He did express his consent to the stoma being inserted at the time, but this consent seemed entirely contrary to his unambiguous rejection of this procedure, expressed bluntly to three consultants with whom he had discussed it. It also appeared entirely inconsistent with everything he had said to his mother, father and step-sister on the point.
Significantly, on 4th February 2020 MSP had written a carefully crafted Advance Directive which he had copied to his parents and to his step-sister. Outside the hospital setting these were the only three people who knew MSP had a stoma. He did not even wish his grandmother to be told. In this Advance Directive he stipulated, among other things, that he would refuse the “formation of a stoma, through an ileostomy, colostomy, urostomy or similar, that is expected to be permanent or with likelihood of reversal of 50% or under”.
The issue in this case was whether the removal of a foreign national from the UK would breach their rights under Article 3 not to be subject to inhumane or degrading treatment where they are in receipt of medical treatment in the UK which is not available in their home country.
In 1997 the European Court of Human Rights (ECtHR) determined in D v UK(Application no. 30240/96) that, as the applicant was in the advanced stages of AIDS to the extent that he was reliant upon palliative care in the UK and would receive no comfort or moral support in his home country, his removal would constitute a breach of Article 3. This was noted to be a ‘very exceptional’ case.
The current leading domestic authority is N v Secretary of State for the Home Department [2005] UKHL 31. N was also diagnosed with AIDS but owing to the availability of treatment in the UK she was expected to live for decades; however, if returned to Uganda, where such treatment was not available, she would die within one to two years. Lord Hope set out the test for ‘very exceptional’ as follows:
For the circumstances to be […] ‘very exceptional’ it would need to be shown that the applicant’s medical condition had reached such a critical stage that there were compelling humanitarian grounds for not removing him to a place which lacked the medical and social services which he would need to prevent acute suffering while he is dying …” [my emphasis]
Therefore, although N would die much faster in Uganda, as she would not be subject to ‘acute suffering’ whilst dying there was no breach of Article 3. This was held to be the case even though it was accepted that N’s life would be significantly shortened [see Lord Nicholls at para 15]. The issue was declared to be not whether her death would follow removal but whether “there is care available […] to enable [her] to meet that fate with dignity” [Baroness Hale, para. 69]. In N’s case it was considered that such care was available. The Grand Chamber of the ECtHR approved this reasoning in N v UK(Application no. 26565/05).
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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:
In 
Welcome back to the UK Human Rights Roundup, your regular festive trifle of human rights news and views. The full list of links can be found 
If a terminally ill patient has made a “living will”, specifying in advance that they do not want to be resuscitated, doctors must respect these wishes or risk being struck off. The General Medical Council is to announce this guidance in response to the Mental Capacity Act 2005 which gives “living wills” legal status. Doctors must not follow their own personal or religious convictions by prolonging treatment unless there is evidence that a patient may have changed his or her mind.
An editorial article published in the British Medical Journal on 12 July 2012 (subscription required) has provoked controversy in right-to-life circles. The article, entitled “Sanctity of life law has gone too far” criticises the ruling of Baker J in the “M” case where an application to authorise the removal of artificial nutrition and hydration (ANH) from a patient in a minimally concscious state was refused. This blog reported on the 
In the recent judgement of 
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