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End Of Life Notes

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Endoflife Decisions Introduction Learning Objective: Learning Goals:

* Understand the treatment of patients re endoflife who have capacity

* Understand the treatment of patients re endoflife who do not have capacity

* Critically analyse and evaluate the arguments for and against euthanasia/assisted suicide Central Issues:

* Euthanasia involves a doctor deliberately killing a patient. In the UK, this would be murder.

* Assisted suicide is also a criminal offence, but the DPP has discretion whether to prosecute. In response to the Purdy case, the DPP has published factors which will be taken into account re exercising this discretion.

* It may be lawful to administer a dose of painkillers or sedative that could shorten a patient's life, by virtue of the principle of double effect.

* Competent adults have the right to refuse lifesustaining treatment, which in practice means a night to insist that doctors physically remove them from life support.

* Principal arguments in favour of legalising assisted dying are in respect of patient autonomy, compassion, the consistency of the line the law currently draws between lawful and unlawful practices, and the benefits of regulation.

* Principal argument against legalising assisted dying are in respect of the sanctity of life, the view that high quality palliative care makes assisted dying unnecessary, the difficulty of ensuring requests are genuine, the negative impact it might have on the doctor/patient relationship, and the dangers of the slippery slope.

* Some other countries have legalised assisted dying, but opinions differ re whether this has improved the situation.

* In relation to patents who lack capacity, the courts have had to decide whether withdrawing or withholding life support would be in a patient's best interests. Where lifeprolonging measures are futile, or overly burdensome, it can be lawful to withdraw treatment. Controversy at the end of life For several reasons, the question of whether it could be legitimate for the medical profession to help patients die has become a prominent issue in recent years. Firstly, patients who would previously have died can now be kept on life support indefinitely. Secondly, medical progress has not been as successful as extending the period during which we are able to lead healthy independent lives, even though life expectancy has increased. Thirdly, the principle of patient autonomy is of increasing dominance in medical law, raising the question of whether a patient has a right to die. Fourthly, in an increasing secular society, less weight is being given to the proscription of suicide and euthanasia. Fifthly, a number of high profile cases have generated significant attention e.g. Purdy and Nicklinson cases. Terminology

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Euthanasia is confined to cases where a doctor or other person helps a patient die. Assisted suicide is confined to cases where the patient is given the means to die by another party, but commits the act themselves. Assisted dying refers to both.

The Competent Patient Current Law Euthanasia A doctor who deliberately ends the life of a patient commits murder. However, no doctor who has done this has ever been convicted of murder. Both juries and the judiciary treat mercy killings kindly. If someone who is suffering unbearably is killed by a friend or family member, it may be possible to reduce the charge to manslaughter on the grounds of diminished responsibility. The Nicklinson Case Tony Nicklinson, who suffered from locked in syndrome, sought a declaration that it would not be unlawful for his GP to terminate or assist in the termination of his life. He also sought a declaration that by criminalising euthanasia and assisted suicide, the law was incompatible with his right to respect for private life (Article 8). At first instance, the claim was rejected, following which Tony stopped eating and drinking and died 6 days later. Tony's widow, Jane, pursued the case in the Court of Appeal, which refused to recognise a commonlaw defence to murder for euthanasia. This rejection was based on four reasons:

1. There is no selfevident reason why the sanctity of life should give way to the values of autonomy or dignity and there are cogent reasons why sensible people might properly think that it should not.

2. It is wrong to say that there is a right to commit suicide.

3. It is not appropriate for the court to fashion such a defence, which is more appropriately a matter left to parliament.

4. If a defence of necessity cannot be established for assisted suicide, it certainly then cannot be established for euthanasia. In the Supreme Court, the applicant chose to focus exclusively on whether the prohibition on assisted suicide was compatible with Article 8 (discussed below). Assisted Suicide Assisted suicide is a criminal offence punishable by up to 14yrs in prison (Section 2(1) of the Suicide Act 1961), even though suicide itself has been decriminalised in the UK (albeit this does not mean there is a legal or moral right to suicide). In this regard, there are sound policy reasons for this rule e.g. prohibiting suicide pacts, and criminalising the egging on of people online. Given a person can commit suicide without committing any criminal offence (since suicide has been decriminalised), what policy reasons are there for choosing to implicate someone else in a suicide attempt? Firstly, the individual may be incapable of arranging their own suicide. Secondly, the individual may need expert advice re combination of drugs to achieve a quick and painless death simply overdosing can lead to prolonged and agonising death.

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In recent years, there has been growing pressure on the prohibition on assisted suicide, starting with the Pretty case. Mrs Pretty had been diagnosed with progressive and degenerative terminal illness. Her husband was willing to help her commit suicide, but they were anxious he might be prosecuted. Mrs Pretty asked the DPP to give an undertaking they would not prosecute her husband. She then sought review of his refusal on the grounds that it violated her Article 8 rights. In R (on application of Pretty) v DPP, the House of Lords found there had been no prima facie violation of any of Pretty's convention rights. Mrs Pretty then appealed to the European Court of Human Rights in Pretty v UK, which recognised that Article 8 was engaged, but that a complete prohibition on assisted suicide was not a disproportionate response to the concern re protecting vulnerable members of society. In particular, it was said the law in this case (section 2 of the Suicide Act 1961) was designed to safeguard life by protecting the weak and vulnerable, especially those who were not in a condition to take informed decisions against acts intended to end life. Critics of the Pretty decision have noted that the court's reluctance to issue a declaration cannot be justified on the basis of previous landmark decisions like the Airedale NHS Trust v Bland, or the Conjoined Twins case (both discussed below) edging too closely to the 'better off dead' view of human life (as is suggested by the court's focus on the right to life). The former cases touch on the value of a life, and a best interests assessment for the particular individual (i.e. an autonomy concern), whereas the Pretty case concerned liberty, and the freedom to make choices without the State's interference. Arguably, in coming to their conclusion, the courts confused the two. Thankfully, the following cases of Purdy and Nicklinson represents steps being taken towards the right direction. Debbie Purdy and the DPP's Policy A few years after the Pretty case, Debbie Purdy, who suffered from primary progressive MS, brought a claim requesting that she be entitled to know the factors the DPP would take into account when deciding whether to prosecute for assisted suicide. The House of Lords held that Mrs Purdy's Article 8 right was engaged by the DPPs refusal to give more specific guidance on how they might choose to prosecute, and that the DPP must publish their policy identifying the facts and circumstances they'd take into account when deciding whether a prosecution was in the public interest. Specifically, the interference under Article 8 could be justified via 8(2) only if the manner in which the DPP exercised their discretion was accessible and sufficiently precise to enable a person to regulate their conduct accordingly. Following the decision, the DPP published their policy (DPP Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide) in 2010. The policy focuses principally on the motive of the suspect, rather than on the conditions of the victim (i.e. presumably to probe whether there was an infringement of the victim's autonomy). Relevantly, the condition of the victim is not given express reference, but arguably, whether or not the suspect was motivated by compassion (one of the factors to be taken into account) will turn on whether the act relieves the victim of suffering. Interestingly, several of the factors in favour of prosecution are essentially that the suspect was acting in a professional capacity (especially as health care professionals). This is significant for the following reasons: 1

There is a tension between this and the policy's focus on the suspect's motives. A professional assister is unlikely to act for reasons other than compassion.

5. This makes health care providers nervous about how they should react if their patient tells them they are going to travel to Dignitas. Does providing patients with their medical record count as assisting?

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As Lewis argues, this policy may result in more distressing deaths (e.g. botched suicides), favouring amateur assisters. A further problem is that it may leave people without willing friends or family in a difficult position. Compatibility of section 2(1) with Article 8: R (Nicklinson & Anor) v Ministry of Justice In Nicklinson v Ministry of Justice, nine Supreme Court judges heard on the issue of whether section 2(1) of the Suicide Act 1961 is compatible with Article 8 (as if in direct challenge to the ECHR decision on Pretty). Five Justices held that Article 8 was engaged and that the Supreme Court had constitutional authority to make a declaration that the prohibition on assisted suicide in section 2(1) was incompatible with Article 8. Of those five, three declined to grant the declaration, whereas the other two were prepared to do so (Lady Hale and Lord Kerr). The remaining four Justices concluded that the case involved consideration of matters which parliament was better suited to assess. Of these four, two (Lords Clarke and Sumption) were prepared to countenance the future possibility of a declaration but only if parliament had abdicated its responsibility. Several aspects of the judgement are worth noting. First, the tone of almost all the judgements was more sympathetic towards the legalisation of assisted suicide. Only 12 years ago, the House of Lords considered that Article 8 was not even engaged in the Pretty case. Now, not only does it appear to be engaged, but also the court is seriously concerned re compatibility with Article 8. Secondly, there is something curious about declining to make a declaration of incompatibility now, but being prepared to do so if parliament failed to act. As pointed out by Wicks, all a declaration would do is invite parliament to consider whether to act. In no way is this taking the decision away from parliament. In this regard, Mullock argues that the majority judgements in Nicklinson could have the same effect as an incompatibility decision. Pressure on the status quo Several other points of pressure on the status quo: 1 Availability of assisted death at Dignitas acting as a safety valve for UK citizens;

6. Difficulties with travelling to Dignitas for the severely ill and incapacitated;

7. Uncomfortable incentive to travel to Dignitas earlier than one might wish, leading to shorter lifespans;

8. Best practice re endoflife care is to facilitate what patients want most, which is to die in the comfort of their own home;

9. Switzerland has few legal safeguards in place re assisted dying; and

10. Something dishonest and uncomfortable about the UK exporting assisted suicide. The (latest) Assisted Dying Bill The Commission on Assisted Dying, chaired by Lord Falconer, led to the drafting of the latest Assisted Dying Bill, which was unfortunately defeated in September 2015. Under section 3 of the Bill, two independent doctors must separately examine the patient and each of them must be independently satisfied the patient is terminally ill; has the capacity to make the decision to end their own life; and has a clear and settled intention to end their own life which has been reached voluntarily, on an informed basis and without coercion or duress. Terminal illness is defined in section 2 of the Bill to mean an inevitably progressive condition which cannot be reversed by treatment and as a consequence, the person is reasonably expected to die within 6 months. Some issues of the Bill were:

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If a person rejects treatment which may potentially reverse their condition, are they entitled to assisted suicide?

11. Is the 6 month period sufficiently clear and justified to operate as a boundary between those entitled to assisted suicide and those who are not?

12. Is the terminal illness requirement sufficiently wide? What about people who are suffering unbearable pain or crippling disability?

13. Does the requirement for capacity incentivise patients to make a decision about suicide earlier than they might otherwise have?

14. What about patients who are incapable of completing the final act of suicide by themselves?
Again, objections to the Bill took the form of protecting the vulnerable. Liam Fox MP noted that it should not be a matter of making it easier to kill people; rather we need societal change to prevent people from feeling like a burden to others in their elderly years. Palliative Care: The doctrine of Double Effect It is a well accepted principle that it can be lawful to administer painkilling or sedative drugs which might also hasten death or shorten life (per Lord Goff in Airedale NHS Trust v Bland). This stems from the doctrine of double effect, which distinguishes between intended and unintended results. Many palliative care specialists would challenge the idea that proper pain management could ever result in a patient's death, but for the sake of discussion, we shall assume that in some cases, it may very well hasten death. In that case, it becomes hard to draw the line between given patients lethal doses of diamorphine, or terminal sedation, and giving them a lethal injection. Glanville Williams has argued against the doctrine of double effect, saying that it is artificial for doctors to think about one consequence of their action while ignoring the other. Wilkinson also points out that the doctrine of double effect relies on knowledge of the doctor's primary intention, which may be difficult to gauge, effectively leading to a smuggling in of euthanasia via the back
door. Douglas et al. drew upon interviews with clinicians to come to the conclusion that a degree of ambiguity in relation to what is intended may be helpful for doctors there was often a sense coming from the practitioners that the possibility of a double effect was a good thing, that both outcomes were desirable, but that only one needed to be the apparent intention. In a similar vein, McCall Smith argues that we should be slow to deny doctors the comfort they gain from framing their actions in terms of helping. Terminal sedation Palliative care often involves the use of sedation. The distress caused by being unable to breathe or swallow may be relieved by sedatives. It has however been aid that it could be lawful to sedate someone into unconsciousness, at which point if they are not going to recover the artificial nutrition and hydration keeping them alive might be removed. It is not clear this happens in the UK but provided the principal purpose of giving the sedative is to relieve pain and suffering, this might be justified by the doctrine of double effect. Furthermore, from a patient's perspective, terminal sedation is indistinguishable from lethal injection. Muscle relaxants for Agonal Gasping Often when a patient is close to death, a muscle relaxant will be injected to stop the patient from making a gasping noise, which is indicative of respiratory failure. This muscle relaxant works by

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