Dignity, Death and Deprivation of Liberty: Human Rights in the Court of Protection
12 October 2012
Wednesday’s debate on current key topics in the Court of Protection was a hard-hitting discussion on matters which elicit strong views, such as voluntary euthanasia, assisted suicide, the role of “dignity” and “sanctity of life”, and whether the latter two principles can ever be reconciled.
The fact that these are not essentially legal issues was underscored by the inclusion of ethics philosopher on the interventionist panel, Professor Anthony Grayling, who fielded the questions put to him alongside Philip Havers QC and Leigh Day solicitor Richard Stein. A video of the event will shortly be available on the 1 Crown Office Row website so I shall try to refrain from any spoilers, but here is a brief trailer to whet the appetite for a full recapitulation.
The evening started with a consideration of the Nicklinson and Martin cases, on voluntary euthanasia and assisted suicide respectively. There were a number of questions put to the panel which essentially rolled up into this:
Should voluntary euthanasia be a possible defence to murder, or can we justify action with a primary purpose of killing a person on the grounds of preventing that person’s harm or suffering?
The panel was broadly in agreement that it should. Richard Stein observed that the argument that there can never be adequate safeguards to protect the vulnerable is being used as a “smokescreen”, and, equally, the notion that disabled people cannot exercise their free will to die because it reduces the value of disabled lives is a “hugely patronising” one. Courts keep saying this is a matter for Parliament, but Parliament won’t take any action on it, as Philip Havers pointed out . He gave evidence before the select committee which considered Lord Joffe’s proposals on assisted dying in 2006. The bill petered because the select committee was “divided right down the middle”. Which is surprising, given the unanimity of the panel and near-unanimity of the audience on this point. And as Grayling observed, if the impossibility of introducing absolutely watertight safeguards were a real obstacle to legislating, we wouldn’t have any banking systems – there is no such thing as a watertight safeguard.
“Euthanasia” means a good death. In Grayling’s view the distinction between voluntary euthanasia (where the individual cannot, possibly through disability, take any part in the steps leading to his death) and assisted suicide is very small indeed. Article 2 cannot mean that the state has a duty to keep people alive –
The ultimate palliative is the right to be released from life. Dying is a living act.
The case of Haas v Switzerland put these questions in even starker form. Even countries that do allow euthanasia have in place very strict conditions such as the presence of terminal illness and pain. But there was no life-threatening illness in this case. Haas suffered from a severe bipolar disorder such that he felt he could not live a dignified life. He sought a prescription for sodium pentobarbital, which would allow him to die in a controlled way, but Swiss law would not allow a doctor to prescribe him the medication because his wish to end his life was seen as a symptom of mental illness. Although the questions for discussion revolved around Articles 2 and 8, asking how a right to private life can encompass a right to die, the panel was more preoccupied with the Catch 22 situation that Mr Haas found himself in, in which the state says he had a mental disorder that prevented him from deciding that this mental disorder made his life not worth living. In any event, in Philip Havers’ view,
it ought to make no difference what we think of the state or condition of the person who wants to die. All that matters is that person should have autonomy.
The middle section of the seminar was taken up with a discussion on deprivation of liberty but the question of autonomy and end of life decisions resurfaced when we got on to the final part “Dignity: Drawing together the Strands”. This featured the case of Patient M (the “minimally conscious” woman whose family sought a declaration that life-sustaining treatment should be withdrawn) and the panel was asked
Should the judge have concluded in this case that in circumstances where there is no immediate likelihood of death and the patient is not in a permanently vegetative state, the principle of preservation of life can never be trumped?
In other words, where should the notion of the sanctity of life lie with respect to dignity? In this, and the case of the anorexic woman resisting force feeding, Richard Stein thought that the preservation of life at all costs was essentially an “empty principle”
We none of us life our lives on the basis of preservation of life at all costs. If we did, we wouldn’t be here tonight
– as Stein explained, he rode a motor scooter to the event. That is not a life preserving measure.
And Grayling chimed in by asking what sort of thing “sanctity of life” could be without autonomy and dignity. There is so much historical baggage in the word “sanctity”
… but we all forget about sanctity of life when we send our soldiers abroad.
As you can tell, the gloves were off by the end of the evening and there was no shortage of participation from the highly informed audience, with strongly expressed contributions from all sides. Whatever side of the controversy you are on I highly recommend downloading the full seminar handout which will go online with the video. It lays out the cases and articulates the questions arising out of them in a much more structured and focussed fashion than I have suggested in this brief description of a highly instructive and fascinating debate.
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Here is another viewpoint on the subject:
http://www.latentexistence.me.uk/whats-the-difference-between-1930s-germany-and-modern-day-britain/
As a Deaf person, I endorse many of the points and sentiments expressed therein.
The comparison with banking is inept. Loss of all your money is reversible – the government can undertake to do it, if it chooses. If the government could bring you back to life (if it discovered you were unduly influenced in exercising your autonomy) the analogy might hold.
We cannot accept that autonomy trumps all other values. Autonomy is not exercised in a vacuum – exercise of one’s autonomy affects other people (if you require a doctor to kill you, contrary to her principles, for example). Moreover, people are entitled (up to a point) to exercise their autonomy to influence how others exercise theirs. But up to what point? How do you police this?
The practical problem is that once the law changes, the safeguards dissolve. We’ve seen this with abortion. When this came in, safeguards were provided. Now they are often ignored – because public opinion has changed (rightly or wrongly) following the change in the law. The same would happen with euthanasia. It is therefore a waste of time to debate whether effective safeguards are theoretically possible. The only thing that works is a bright line prohibition.
Agree Tim, its already happening: http://www.dailymail.co.uk/news/article-2217073/Did-NHS-kill-mother-free-bed.html
There are no ‘safeguards’ at all against involuntary euthenasia ..a) there is an inequality of arms, as patients can only refuse treatment in advance, not insist on it.
and b) even when there is cast iron proof, doctors are not even struck off, let alone prosecuted – 90 families with relatives who were murdered by Jane Barton are STILL fighting for an inquest, yet despite a coroner’s jury verdict , she did not even get struck off by the GMC, but was allowed to carry on working with vulnerable patients…..
My mother was placed on LCP last year without consent or discussion when she did not have a terminal illness (discovered after her death). I challenged the withholding of fluids and at the time and a solicitors letter was sent. The consultant denied that she was on an end of life care plan – but her notes show she was deprived of fluids for 48 hours until I intervened. Two weeks later after showing signs of recovery from her ordeal she developed an infection. Family insisted on antibiotics but unknown to them she was denied the necessary life-saving treatment. Relatives were told she had progressed dementia when she had a treatable condition after doctors had made thedecision “not to escalate her care” or “treat a potential sepsis”. Best interest meeting was held five minutes or so before her death when it was understood she was about to die. I left the meeting and she died while it was ongoing.
12 October 2012
Dear Ms English
I am impressed by your analysis and believe that it is vital for people to remember the Mental Capacity Act 2005 is an enabling act which seeks to discover what a person’s wishes are.
The biggest problem however is that although suicide is no longer illegal, assisted suicide is.
And it remains controversial.
How does this sit with the Human Rights Act?
Thank you very much for bringing this to the public’s attention in such a dynamic way.
With best wishes
Rosemary
Rosemary Cantwell
Until such time as patients have a legal right to DEMAND treatment, as well as the legal right to refuse it in advance, there is never going to be a fair fight for life between a pensioner with mild dementia who wants a stint on a dialysis machine to get over a kidney infection, and an ambitious schmuck doctor with an overbooked NHS waiting list, who the law and GMC allow to use their ‘clinical judgement’ to decide what is ‘futile’, or ‘too burdensome’, or ‘in the patient’s best interests’.
there is a requirement for ‘terminal illness and pain’ to receive palliative care..but no concrete definition of ‘terminal ‘ in the Liverpool Care Pathway, the GMC, the DWP or the British Institute of Insurers.
According to the NHS, ‘dementia’ is now something that enters an ‘end stage’…why do you think they’ve had a drive to screen patients for dementia recently in geriatric wards across the UK? Theres no treatment, so it cant be the intention to treat, and theres no preventative treatment, so it cant be to halt progression…..why screen for it at all??.
Nicholson had previously suffered from aspiration pneumonia I believe, which was treated with antibiotics….we all saw how easy it was for him to die in 3 days on a ‘refusal of antibiotics/food/fluids + heavy sedation + prn pain relief regime’….why didnt his solicitors and GP advise him of this regime for nearly 4 years??? Seems rather cruel.
Do wish some HR barristers and solicitors would take an interest in the ‘involuntary euthenasia being carried out daily across the UK – no living will? Only a verbal refusal of the Liverpool Care Pathway? Heavily sedated with only an overbooked doctor’s word that you said you wanted to be killed? …..no chance of the Coroner being remotely interested or of securing legal representation whatsoever then…….
http://www.dailymail.co.uk/news/article-2216503/Cancer-mum-denied-chance-say-goodbye-doctors-did-try-alive.html
Why can a ‘cancer patient’, who has a 75% chance of surviving at least another 3 years in remission, be denied access to any treatment at all with no videod consent whatsoever???? Why do all your human rights disappear once you have a ‘terminal ‘ diagnosis?
I genuinely support the right to die (with caveats), but you saw how easy it was for Mr.Nickolson to die on the Liverpool Care Pathway (< 30 hours in a sedated state) – do you not see how this system is already being abused, and how little protection there is for the 'low quantum deaths' category of patient??
Does seem odd that the State is willling to spend thousands of pounds and requires that a Judge is needed allow the withdrawal of treatment from a patient in a PVS, but the same doctor can withold any treatment from the same patient if they consider it to be ‘futile’.
If they need to clear a bed, its amazing how negative the ‘discussions’ about likely survival with relatives become, and even if they object, the doctors can simply ignore your wishes altogether. A cancer diagnosis is like having the hex put on you.
Once you have a ‘cancer’ diagnosis , all treatments (even aspirin to disperse a blood clot) can be considered ‘futile’…dialysis, antibiotics for a cold…everything ..is ‘prolonging the dying process’…and allowed to worsen until you die.
Tony Nickleson’s case did indeed prove that you can already die when you want to….or 3 days after the prn fentanyl and midazolam doses start. ‘PRN’ ..in the LCP is a limitless daily dose…….all you have to do is withdraw consent for all other treatments and say you are in constant pain……dead in 3 days. What exactly is the legal profession seeking in addition???