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The right to sign our own ‘death sentence’. The right to die and to refuse medical treatment or intervention.

“I do believe that it is a person’s first human right to be able to determine when, where and how to end his own life. All this talk about a person’s life being ‘a gift from god and only he can decide when a person’s life can end’ is utter rubbish.

“I don’t really care if you believe in god, Santa or the tooth fairy; it is okay up to a point but when believers insist that their way is the only way I get angry. What if you believe in a different faith or no faith? I object to being told what I can and cannot do by a faith I don’t believe in (for the record I am an atheist). I feel that I am denied my most basic human right; I object to society telling me that I must live until I die of natural causes and I will do all I can to restore those rights.”

Mr Tony Nicklinson in The Independent: Tony Nicklinson: ‘Perhaps I’ll say goodbye on Twitter’

The Independent reports: “A severely disabled man with locked-in syndrome will this week endeavour to change euthanasia laws by convincing three High Court judges that any doctor who helps him to die should not face criminal charges.

In a landmark case Tony Nicklinson is asking the court to extend the common law of ‘necessity’ to assisted suicide and murder so that he can be medically helped to die without the doctor risking prosecution.

Can it be right, in a civilised society, that an individual be denied the right to determine the mode and time of death, ask for the assistance of a compassionate third person without the risk of that third person being prosecuted or be denied the right to refuse medical treatment when life is so unbearable that life becomes a burden?

This a complex moralo-ethical issue beset with difficult legal issues – not by any means clear in law: statute or caselaw.

1.  The Suicide Act 1961 states that it is no longer a criminal offence to take one’s own life.  Unfortunately, without medical assistance, suicide is often grim, bloody and painful.

2.  The law on assisted suicide is rather more complex and is regulated, in the United Kingdom,  guidelines published by the Director of Pubic Prosecutions,

3.  The legal presumption in favour of life: Mr Justice Peter Jackson in A Local Authority v E [2012] (Infra) at para. 120 states: “All human life is of value and our law contains the strong presumption that all steps will be taken to preserve it, unless the circumstances are exceptional.  This principle is reflected in Article 2 EHCR, which provides that everyone’s life shall be protected by law.  It is the most fundamental of the Convention rights.”

  4. Set against Article 2 ECHR is Article 8 ECHR: ” The ability to lead one’s life as one chooses is the cornerstone of individual liberty.  Article 8 ECHR guarantees  the right to respect for a person’s private life.  This right belongs to “everyone” and the fact that a person lacks mental capacity does not deprive them of its protection. “  Peter Jackson J, A Local Authority v E [2012]  (Infra) at para. 125

Later this week, Mr Nicklinson will ask the court to extend the common law of ‘necessity’ to assisted suicide and murder so that he can be medically helped to die without the doctor risking prosecution.  The problem for Tony Nicklinson – he cannot take his own life or fall within DPP guidelines. He needs someone else to kill him – which is murder as presently defined –  a step too far? Parliament will not sanction euthanasia for the present or, in all likelihood, the long term future.  The judges are likely to say that this is a matter for Parliament?

5. The right to refuse medical treatment and medical intervention:

In A Local Authority v E [2012]., on the right to refuse medical treatment or intervention,  Mr Justice Peter Jackson had to balance the sanctity of human life with the individual rights enshrined in Article 8 ECHR.  The judgment is clearly written and well worth careful reading.

Peter Jackson J set out the law on capacity (paras 7-11):

The law

7. People with capacity are entitled to make decisions for themselves, including about what they will and will not eat, even if their decision brings about their death.  The state, here in the form of the Court of Protection, is only entitled to interfere where a person does not have the capacity to decide for herself.

8. By contrast, where a person lacks capacity, there is a duty to make the decision that is in her best interests.

9. The first question therefore is whether the person has capacity.  The second, which can only arise if she does not, is what decision is in her best interests.

10. A valid advance decision made at a time when a person has capacity will be effective if the decision has to be made after capacity has been lost.

The Mental Capacity Act 2005

11. These principles appear and are amplified in the statutory framework of the Mental Capacity Act 2005 (‘the MCA’), the relevant provisions being ss. 1-4 and 24-26.

1    The principles
(1)    The following principles apply for the purposes of this Act.
(2)    A person must be assumed to have capacity unless it is established that he lacks capacity.
(3)    A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
(4)    A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
(5)    An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
(6)    Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

Obiter J considers the complex case of A Local Authority v E [2012] Court of Protection ~ Anorexic patient ~ Capacity to refuse treatment

“We only live once – we are born once and we die once – and the difference between life and death is the biggest difference we know” – Peter Jackson J  

In the Court of Protection, Peter Jackson J has given judgment in A Local Authority v E [2012] EWHC 1639 (COP).  See The Guardian 15th June 2012 – “Anorexic woman should be fed against her wishes, judge rules” – and listen to Dr Tony Calland of the British Medical Association Ethics Committee.

Read Obiter J’s analysis and summary…

Obiter J notes:

Decisions on three issues were required (para 46) and it was necessary to take them in the following order.

(1) Did E have the mental capacity to make decisions about her treatment?  The judge answered NO – paras. 47-53.

(2) Did E have mental capacity when she made an advance decision in October 2011.  Again, NO – paras. 54-70.  Interestingly, it may have been the case that E had acted inconsistently with her purported advance decision but the judge did not have to decide this point since he had held that the advance decision was invalid for lack of capacity.

(3) Was it in E’s best interests to receive life-sustaining treatment in the form of forcible feeding with all necessary associated measures.  The answer was YES and this is addressed from para. 71 onwards.

Making the decision as to the best interests of a person was not a mechanistic exercise but was an intuitive process with weighty factors on each side of the scales (para. 129).  At para. 114 the judge summed up the factors involved in the “best interests” decision.  On the facts of this case, the legal presumption in favour of saving life was not displaced.  There was a possibility that the treatment now available (and for which funding was now available) would succeed.  The judge seems to have been influenced by the commitment of the health authority to a treatment plan.  In the final paragraph of his judgment, the judge indicated that the authorities were now honour-bound to see through the provision of resources in the short, medium and long term.  “Had the authorities not made that commitment, I would not have reached the conclusion that I have.”

In relation to the law, Peter Jackson J had the benefit of Baker J’s comprehensive survey of the law relating to withdrawal or withholding of life-sustaining treatment in W v M and others [2011] EWHC 2443 (COP).  Nevertheless, Peter Jackson J set out, in a straightforward manner, the relevant law at paragraphs 7 to 15 of his judgment and he stated that – “the court has to approach its task in a highly individualised way, focusing on the situation of the individual concerned” (para 12). European Convention rights engaged were Articles 2, 3 and 8.  On these see the judgment at paras. 119-123 (Art 2); 126 (Art 3) and 124 (Art 8)

Validity of advance decision
Mr Justice Peter Jackson stated at para 54: Where there is a genuine doubt or disagreement about the validity of an advance decision, the Court of Protection can make a decision: MCA Code of Practice at 9.67.  If ever there was a case where this route might have been taken, this was it.

para 55: I consider that for an advance decision relating to life-sustaining treatment to be valid and applicable, there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time.  Where the evidence of capacity is doubtful or equivocal it is not appropriate to uphold the decision. 

Mr Justice Peter Jackson:

The right to life

120. All human life is of value and our law contains the strong presumption that all steps will be taken to preserve it, unless the circumstances are exceptional.  This principle is reflected in Article 2 EHCR, which provides that everyone’s life shall be protected by law.  It is the most fundamental of the Convention rights.

121. However, the principle is not absolute and may yield to other considerations: Airedale NHS Trust v Bland [1993] AC 789.

122. Likewise, the MCA might have given absolute priority to the preservation of life, but it does not.  The approach taken by the Act is accurately reflected in the MCA Code of Practice at 5.31:

“All reasonable steps which are in the person’s best interests should be taken to prolong their life.  There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery.”

123. E’s life is precious, whatever her own view of it now is.  She is still a young woman, with the possibility of years of life before her.  The prospects of her making a reasonable recovery are highly uncertain, but it cannot be said that treatment efforts are doomed to fail or that treatment would inevitably be futile.

124. As to the quality of E’s life if she were treated, it is possible, but not probable that she could achieve a state of being that would be acceptable to her.  It is more likely that the underlying difficulties would remain and that her life would continue at best to be a struggle.  It would in part depend upon the quality of support and professional services that would be available and whether they would be different to what has been available in the past.

Respect for personal independence

125. The ability to lead one’s life as one chooses is the cornerstone of individual liberty.  Article 8 ECHR guarantees  the right to respect for a person’s private life.  This right belongs to “everyone” and the fact that a person lacks mental capacity does not deprive them of its protection.

126. The treatment that is proposed for E amounts to a very severe interference with her private life and personal autonomy.  It could only be justified on the basis that it was necessary, in accordance with the law and proportionate to a legitimate aim, namely the preservation of life.

127. Likewise, forcible feeding would be an assault upon E and a violation of her rights under Article 3 ECHR, which prohibits inhuman or degrading treatment, unless it was shown to be in her best interests on the basis of therapeutic necessity that has been convincingly shown to exist: Herczegfalvy v Austria [1993] 15 EHRR 437.

Doughty Street Chambers summarises the complexity of the judgment as follows: “The Judge concluded that ‘The competing factors are, in my judgment, almost exactly in equilibrium, but having considered them as carefully as I am able, I find that the balance tips slowly but unmistakably in the direction of life-preserving treatment. In the end, the presumption in favour of the preservation of life is not displaced’.

Mr Justice Peter Jackson stated:
138. Against them, I place E’s life in the other scale.  We only live once – we are born once and we die once – and the difference between life and death is the biggest difference we know.  E is a special person, whose life is of value.  She does not see it that way now, but she may in future.

139. I would not overrule her wishes if further treatment was futile, but it is not.  Although extremely burdensome to E, there is a possibility that it will succeed.  Services and funding will now be provided that were not available before, and it would not be right to turn down the final chance of helping this very vulnerable young woman.

The final paragraph of Mr Justice Peter Jackson’s judgment is instructive: “I record that the state, having instigated this plan of action for E in the way that it has, is now honour-bound to see it through by the provision of resources in the short, medium and long term.  Had the authorities not made that commitment, I would not have reached the conclusion that I have. “

The case illustrates the complexity of the issues faced by the court while stressing the importance of the rights of an individual to lead one’s life as one chooses – a cornerstone of individual liberty under Article 8 ECHR.

Is it reasonable, in the light of this and other judgments (Baker J in W v M & Ors [2011] EWHC 2443 (COP) ),  to conclude that certainty over one’s life choices and rights under Article 8 ECHR will only be assured if there is very clear evidence of (a) capacity to make a decision or an ‘advance decision’; and (b) there are no inconsistencies which reveal ambiguity as to intention?

If this is the case – what would amount to “clear evidence establishing on the balance of probability that the maker had capacity at the relevant time“?

Mr Justice Peter Jackson was careful to point out ” I consider that for an advance decision relating to life-sustaining treatment to be valid and applicable, there should be clear evidence establishing on the balance of probability that the maker had capacity at the relevant time. 

Perhaps the law needs to be clarified on this issue so that those faced with making ‘advance decisions’ can face the rest of their lives safe in the knowledge that their free will and  choice(s) will be respected by the authorities and the Court of Protection?

Do we have the right to sign our own ‘death sentence’?

Mr Justice Peter Jackson stated (Supra): “People with capacity are entitled to make decisions for themselves, including about what they will and will not eat, even if their decision brings about their death.  The state, here in the form of the Court of Protection, is only entitled to interfere where a person does not have the capacity to decide for herself. “

Is the clear statement above determinative?

Claiming no specialist expertise  (I write to highlight the issue) – and welcoming advice and comment from practitioners in this difficult field – is it reasonable to suggest that while The Mental Capacity Act provides that a  person of full capacity may make a decision, even if it brings about their own death – there is still room for the judges of the Court of Protection to override an individual’s wishes by examining the capacity issue and finding that there was insufficiently ‘clear evidence’?

W (by her litigation friend, B) v M (by her litigation friend, the Official Solicitor) and others [2011] – admits for the possibility of a legally valid advance decision expressing a wish to forego life-sustaining treatment: What is a life worth living? Further analysis of “M” – Daniel Sokol

It must be a very difficult question for a trial judge faced with a ‘life or death’ situation  to resolve and one accepts that they will do all they can to preserve the sanctity of life unless there is very clear evidence to respect the wishes of the individual.

Should we ask a judge to make such a decision?  Parliament will not sanction ‘assisted suicide’.  Is it likely that Parliament will provide clarity in cases of medical treatment and intervention – or will they abrogate responsibility to an ‘unelected judge’?

I would be very interested to hear from practitioners in this field – for I do not claim any expertise in this complex issue – and welcome comment.

***

I found an article written by Daniel Sokol,  a pupil barrister at 1 Crown Office Row and an Honorary Senior Lecturer in Medical Ethics at Imperial College London, was most helpful: Are lawyers in right-to-die cases breaking the law?

as were these posts from The UK Human Rights blog:

Related posts:

• A step closer to the legalisation of assisted suicide?
• What is a life worth living? Further analysis of “M” – Daniel Sokol
• States Not Obliged to Assist Persons Wishing to Commit Suicide – Antoine Buyse
• GMC to announce policy of striking off doctors who prolong the lives of terminally ill patients against their wishes [updated]
• Previous posts on the Pretty and Purdy cases

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