MY LIFE, MY DEATH, MY CHOICE? END OF LIFE DECISIONS WHERE ARE WE NOW?

13/11/18

BRAIN INJURY GROUP

LONDON

Patricia Wass Consultant Solicitor Enable Law

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PATRICIA WASS

Patricia has over 30 years' experience working as a Solicitor dealing with all aspects of private client law. Patricia is a consultant in the mental capacity team at Enable Law (part of the Foot Anstey Group) and specialises in Powers of Attorney, Court of Protection work and legal issues relating to the elderly and vulnerable. She is a Panel Deputy for the Office of the Public Guardian, one of only 71 people acting in this role throughout England and Wales. She lectures regularly on her practice area for various legal training providers and contributes articles to legal journals. Patricia has written for the Law Society, the Elder Law Journal, and has been interviewed by industry publications including STEP and CityWealth Magazine.

Patricia is the current Worldwide Chair of the Society of Trust & Estate Practitioners. Patricia served as a member of the West of England STEP Committee between 2000 and 2013 (Chair between 2006 and 2009) and is a Past Chair of the Law Society Private Client Executive Committee. Patricia is also a past Chair of the STEP England and Wales Regional Committee, a member of the STEP Governance Council, and acts as a Director on the STEP Worldwide Board.

She is also a fully accredited member of Solicitors for the Elderly (SFE) and assisted on the Committee for the Devon & Cornwall SFE Regional Group. Patricia is recognised as a Top Ranked 'Leader in her Field' by Chambers UK legal directory.

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My Life, My Death, My Choice? End of Life Decisions – Where are we now?

The founder of the modern hospice movement, Dame Cicely Saunders (1918 – 2005) said:

"You matter because you are you, and you matter to the end of your life."

It is a fact that more and more people are living with long term conditions, partly due to those acquired in adult life, partly because more babies and children with life limiting conditions can now live to adulthood and, mostly, because we are all living longer. But, ultimately, we all die. It was the much quoted Benjamin Franklin who said:

"In this world nothing is certain but death and taxes."

Over the last 18 months, we have seen a number of high profile cases reported concerning end of life decision making. For example, the very sad cases of Charlie Gard and Alfie Evans whose parents have tested the Doctors and the Court system in their quest to keep Charlie and Alfie alive and for treatment to be allowed to be administered which they hoped would give their children a better quality of life, and the ability to be allowed to live for a bit longer, despite their profound disabilities. Sadly, both children have died. We have also seen the case of Noel Conway brought in an attempt to change the current law on assisted dying.

In the End of Life Care Strategy 2008, produced by the National Council for Palliative Care, there is a working definition of End of Life Care which is as follows:

"End of Life Care is care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support."

There is a further definition of End of Life Care included in the NHS End of Life Care Strategy (Actions for End of Life 2014 – 2016) which is "any care provided to a patient, family member or carer where the patient is felt to be likely to have less than a year to live."

When considering issues around assisted dying we need to understand the current legal position and also to explore how this is being challenged.

The Legal Framework The current legal status of assisted suicide

The phrase "assisted suicide" is now more commonly referred to as "assisted dying". Deliberately and directly taking the life of another person, whether that person is dying or not, constitutes the crime of murder. The Suicide Act 1961, updated by The Coroners and Justice Act 2009, makes encouraging or assisting a suicide a crime which is punishable by 14 years imprisonment.

Section 2(i) of The Suicide Act 1961 provides:

"A person who aids, abets, counsels or procures the suicide of another, or an attempt by another to commit suicide, shall be liable on indictment to imprisonment for a term not exceeding fourteen years."

The Suicide Act 1961 is applicable when a substantial part of the aiding, abetting, procuring or counselling of the suicide occurs in England and Wales. The suicide itself can be committed in any country.

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As with every other case, the Code for Crown Prosecutors (the Code) will be applied; there must be enough evidence to provide a realistic prospect of conviction. If the case does not pass the evidential stage, it must not go ahead no matter how important or serious it may be. If the case does pass the evidential stage, consideration must be given as to whether a prosecution is needed in the public interest.

The Code sets out a substantial number of factors both for and against prosecution in all types of cases. Cases of assisted suicide are dealt with in the Special Crimes Division in the Crown Prosecution Service (CPS) Headquarters. The Head of that division reports directly to the Director of Public Prosecutions (the DPP). Any prosecution outside the Special Crimes Division of CPS HQ who receives any enquiry or case involving an allegation of assisted suicide has to notify the Head of the Special Crimes Division so that the matter can be investigated further. When considering such cases, the CPS policy for prosecutors in respect of cases of encouraging or assisting suicide has to be read alongside the Code for Crown Prosecutors.

In recent years the law on assisted suicide (or assisted dying) has been challenged and continues to be challenged. A number of cases have set the scene for the current law to be overhauled and we have seen a number of bills put before Parliament seeking to address the issues.

Some of the most significant cases are as follows:

1. Airedale NHS Trust v Bland [1993] 1 All ER 821 H2

Anthony Bland (21 September 1970 – 3 March 1993) was a supporter of Liverpool FC and was injured in the Hillsborough Football disaster. This was a human crush at Hillsborough Football Stadium in Sheffield on 15 April 1989. There were 96 fatalities and 766 injuries, making it the worst disaster in British sporting disaster. Tony Bland was one of the supporters, and whilst he survived the initial crush, he suffered severe brain damage and he eventually became the disaster's 96th victim on 3 March 1993, aged 22, after being in a coma for nearly 4 years. He never regained consciousness after the crush, and was left in a permanently vegetative state.

The Airedale NHS Trust applied to the Court at first instance for a declaration to the effect that:

- They might lawfully discontinue all life-sustaining treatment and medical support measures, including ventilation, nutrition and hydration by artificial means

- Any subsequent treatment given should be for the sole purpose of enabling him to end his life in dignity and free from pain and suffering - If death should then occur, its cause should be attributed to the natural and other causes of his present state - And none of those concerned should, as a result, be subject to any criminal or civil liability

For the most part the declaration was granted and the Court considered it was in the patient's best interests for treatment to be withheld and that its discontinuance was in accordance with good medical practice.

Acting on Tony Bland's behalf, the Official Solicitor, acting as his Guardian ad litem, appealed the decision which then went to the Court of Appeal.

In the Court of Appeal, and because of the legal ramifications, a number of Expert witnesses were called to give evidence. These included Professor Bryan Jennett, who along with Professor Fred Plum, coined the term "persistent vegetative state" in 1972. The opinion of the Experts on all sides was that Bland had no awareness and could experience no pain or pleasure, and there was no hope of any recovery. In those circumstances, the Court of Appeal affirmed the decision of the High Court. The Official Solicitor then appealed to the House of Lords.

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All five Law Lords who heard the Appeal gave their own reasoned Judgments and they also unanimously dismissed the Appeal. They all agreed that, although the object of medical treatment and care was to benefit the patient, since a large body of informed and responsible medical opinion was of the view that existence in a permanent vegetative state was of no benefit to the patient, the principle of the sanctity of life, which was not absolute, would not be violated by ceasing to give medical treatment. The Judges acknowledged that the care needed to keep Bland alive had involved invasive manipulation of his body, to which he had not consented and from which he did not benefit. It followed that the treating Doctors were not under a duty to continue care. Shortly after this, the palliative care was withdrawn and he subsequently died.

However, in its ruling the Court advised that if similar situations arose in the future, families and Doctors should seek advice from the Court before taking action, as the right course of action would need to be decided on a case by case basis. The Court in this case also specifically distinguished from euthanasia, which is a criminal offence.

2(a). The Queen on the Application of Mrs Dianne Pretty (Appellant) v Director of Public Prosecutions (Respondent) and Secretary of State for the Home Department (Interested Party_) [2001] UKHL 61

2b. ECHR, Pretty v The United Kingdom, Application No. 2346/02

Diane Pretty (15 November 1958 – 11 May 2002) was a British woman from Luton who was diagnosed with Motor Neurone Disease and she wanted her husband to assist her in committing suicide when she was no longer able to do so herself. She asked the DPP to grant her husband immunity from prosecution. Otherwise, this would be treated as an assisted suicide, under s2 Suicide Act 1961.

In view of the fact that suicide is a lawful option for those capable of committing it, it could be argued that refusing the option to those disabled could be considered discriminatory, which is unlawful under both UK and European law. In return, assisting someone in committing suicide who cannot themselves is not considered a "service" to which one can be deprived.

Diane Pretty took her case to Court using the Human Rights Act 1998 and argued that the DPP should make a commitment not to prosecute anybody involved in helping her to die. She focused on Articles 3 and 8 in her argument.

[NB "Article 3 EHCR – Prohibition of torture

No one shall be subjected to torture or to inhuman or degrading treatment or punishment."

"Article 8 ECHR – Right to respect for private and family life

1. Everyone has the right to respect for his private and family life, his home and his correspondence. 2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic wellbeing of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others."]

The British Courts did not accept her arguments, with the House of Lords eventually turning her case down.

The European Court of Human Rights refused to acknowledge that the European Convention on Human Rights provided a right to die, and her appeal to that Court also failed. Her condition deteriorated just three days after the European Court ruling and she died in a hospice near her home on 11 May 2002.

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3. R (Purdy v DPP [2009] UKHL 45

Debbie Purdy (4 May 1963 – 23 December 2014) was a British music journalist, and political activist from Bradford, West Yorkshire. She suffered from progressive multiple sclerosis, for which there is no known cure. She was diagnosed in 1995. Purdy's particular concern was to discover if any actions her husband, Omar Puente, took in assisting her suicide would lead him to prosecution under s2 of the Suicide Act 1961. Up to that point no family member of the 92 Britons who had gone abroad for an assisted suicide had been prosecuted, and some had to wait months before hearing that any charges had been dropped. Purdy said that if her husband would be exposed to prosecution for helping her travel to Switzerland to a Dignitas Clinic to die, she would make the journey sooner whilst she was able to travel unassisted. This would save her husband from exposure to the law but would have forced Purdy to make her decision on dying before she felt it was absolutely necessary.

By the time her case came to Court she needed an electric wheelchair and she had lost the ability to carry out many basic tasks. She had problems with swallowing and had choking fits when she drank. Purdy understood that there would come a time when her continuing existence would no longer be of acceptable quality. Mr Puente was willing to help his wife make the journey to Switzerland at the appropriate time.

Purdy, therefore, issued a claim in April 2008 seeking judicial review of the DPP asking him to publish details of his prosecution policy in relation to offences committed under s2 of the Suicide Act 1961. She argued that the DPP had acted unlawfully, either by failing to put a policy in place, or by failing to disclose the criteria which he applies in cases of this kind, whether he calls it a policy or not. That, in summary, was because the criminalisation of assisted suicide under s2 Suicide Act 1961 constitutes an interference with Article 8(i) of the ECHR, the right to respect for private and family life of Mrs Purdy (the Claimant) and Mr Puente (the Interested Party) which is neither in accordance with the law (Article 8(2)), nor proportionate, in the absence of any policy setting out the circumstances in which a prosecution will be brought.

The challenge distinguishes Debbie Purdy's case from that of Diane Pretty. In the Pretty case, she had sought an immunity from prosecution for her husband from the DPP if her husband assisted her to die. However, in the Purdy case, what was sought was disclosure of the criteria that the DPP would take into account in deciding whether to prosecute.

Interim guidelines were produced by the DPP, at the time, Keir Starmer, as a consequence of the House of Lords Judgment for consultation on 23 September 2009. These were entitled "Policy for Prosecutors in respect of cases of Encouraging and Assisting Suicide". The final policy guidelines were produced by the DPP on 25 February 2010. There had been thousands of responses received as part of what is believed to be the most extensive snapshot of public opinion on assisted suicide since the Suicide Act 1961 had been introduced (nearly 5000 responses were received by the CPS following the consultation exercise launched in September 2009).

Mr Starmer said “The policy is now more focused on the motivation of the suspect rather than the characteristics of the victim. The policy does not change the law on assisted suicide. It does not open the door for euthanasia. It does not override the will of Parliament. What it does is to provide a clear framework for prosecutors to decide which cases should proceed to court and which should not. Assessing whether a case should go to Court is not simply a question of adding up the public interest factors for and against prosecution and seeing which has the greater number. It is not a tick – box exercise. Each case has to be considered on its own facts and merits. As a result of the consultation exercise there have been changes to the policy. But that does not mean prosecutions are more or less likely. The policy has not been relaxed or tightened but there has been a change in focus.”

Debbie Purdy died on 23 December 2014. Prior to her death she had spent a year in the Marie Curie Hospice in Bradford and had sometimes refused food. At the time of her death, Lord Falconer said that her role as a campaigner against the law on assisted suicide was "absolutely key" and she had transformed the debate.

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The policy therefore gives individuals an indication of how they are likely to be treated by police or prosecutors and for the first time gives formal recognition that in some circumstances, people should not be prosecuted for helping someone to die, making a distinction between compassionate and malicious acts of assistance.

The sixteen public interest factors in favour of prosecution are:-

• The victim was under 18 years of age • The victim did not have the capacity (as defined by the Mental Capacity Act 2005) to reach an informed decision to commit suicide • The victim had not reached a voluntary, clear, settled and informed decision to commit suicide. • The victim had not clearly and unequivocally communicated his or her decision to commit suicide to the suspect • The victim did not seek the encouragement or assistance of the suspect personally or on his or her own initiative • The suspect was not wholly motivated by compassion, for example, the suspect was motivated by the prospect that he or she or a person closely connected to him or her stood to gain in some way from the death of the victim • The suspect pressured the victim to commit suicide • The suspect did not take reasonable steps to ensure that any other person had not pressured the victim to commit suicide • The suspect had a history of violence or abuse against the victim • The victim was physically able to undertake the act that constituted the assistance himself or herself • The suspect was unknown to the victim and encouraged or assisted the victim to commit or attempt to commit suicide by providing specific information via, for example, a website or publication. • The suspect gave encouragement or assistance to more than one victim who were not known to each other • The suspect was paid by the victim or those close to the victim for his or her encouragement or assistance. • The suspect was acting in his or her capacity as a medical doctor, nurse, other healthcare professional, a professional carer (whether for payment of not), or as a person in authority, such as a prison officer, and the victim was in his or her care. • The suspect was aware that the victim intended to commit suicide in a public place where it was reasonable to think that members of the public may be present • The suspect was acting in his or her capacity as a person involved in the management or as an employee (whether for payment or not) of an organisation or group, a purpose of which is to provide a physical environment (whether for payment or not) in which to allow another to commit suicide

The six public interest factors against prosecution are:-

• The victim had reached a voluntary, clear, settled and informed decision to commit suicide • The suspect was wholly motivated by compassion • The actions of the suspect, although sufficient to come within the definition of the crime, were of only minor encouragement or assistance • The suspect had sought to dissuade the victim from taking the course of action which resulted in his or her suicide • The actions of the suspect may be characterised as reluctant encouragement or assistance in the face of a determined wish on the part of the victim to commit suicide • The suspect reported the victim’s suicide to the police and fully assisted them in their enquiries into the circumstances of the suicide or the attempt and his or her part in providing encouragement or assistance.

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The policy guidelines were updated and came into effect on 16 October 2014. This clarified the previous guidelines and makes the prosecution of health professionals less likely.

The timing of Debbie Purdy's case was significant as this was the very last Judgment of the House of Lords before it rose to re-emerge as the Supreme Court in 2009.

The case also made new law by overturning the decision in the case of Diane Pretty, when it decided that Article 8 of the ECHR, the right to respect for private and family life, was engaged.

4. Aintree University Hospital NHS Foundation Trust v James [2013] UKSC 67

Mr James was a 68 year old man who was seriously ill and had been in intensive care for some 7 months when his Doctors applied to the Court of Protection for declarations as to the lawfulness of withholding further invasive treatment and CPR. At first instance, the Judge had refused to make the "absolute" declarations sought. The Court of Appeal was satisfied, having had regard to new evidence as to Mr James' condition that the declarations were in his best interests. The Supreme Court granted permission to appeal, notwithstanding that Mr James had died shortly after the Court of Appeal Hearing.

The Supreme Court's Judgment (given by Baroness Hale) reaffirmed a number of well- established propositions concerning the MCA 2005 and, in particular, medical treatment decisions.

1) A treatment is not futile if it brings some benefit to the patient, even if it has no effect upon the underlying disease or disability;

2) Recovery does not mean a return to full health, it means the resumption of a quality of life that the patient would consider as worthwhile; and

3) A patient's best interests incorporate, not only medical interests, but also the patient's welfare in the widest sense.

The Supreme Court also held that the Court of Protection can only do what the patient would be able to do himself, if he had capacity. By a survey of the case law she set out the parameters that:

1) A Doctor cannot be forced to provide treatment that he/she does not think is clinically indicated for a patient; and conversely

2) A Doctor cannot lawfully provide treatment that is not in the best interests of the patient.

The Court cannot Order either of these things.

The central part of the Judgment dealt with how to determine what is in a patient's best interests. The starting point is the strong presumption that it is in a person's best interests to stay alive. Following that, every case must be decided on its own facts. Lady Hale said:

"In considering the best interests of this particular patient at this particular time, decision makers must look at his welfare in the widest sense, not just medical but social and psychological, they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be."

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The case set out a clear framework for what kind of medical results will be expected to weigh in favour of treatment, but also what personal considerations need to be taken into account when assessing whether treatment should be provided. One of the most significant elements of the Judgment is the weight placed on the role of the patient's (or their family's) wishes in determining what constitutes a worthwhile recovery, and what is in their best interests. It sets out a clear imperative for participation and consultation with patients and their families in making sensitive decisions about their future healthcare.

5. R (on the application of Nicklinson and another) (Appellants) v Ministry of Justice (Respondent) R (on the application of AM) (AP) (Respondent) v The Director of Public Prosecutions (Appellant) R (on the application of AM) (AP) (Respondent) v The Director of Public Prosecutions ((Appellant) Judgment given on 25/06/2014 [2014] UKSC 38 on appeal from [2013] EWCA Civ 961

The three appeals arose out of tragic facts and raised difficult and significant issues, namely whether the state of the law of England and Wales relating to assisted suicide infringed the European Convention on Human Rights, and whether the Code published by the DPP relating to prosecutions of those who are alleged to have assisted a suicide is lawful.

The appeals arose out of claims brought by three men, Tony Nicklinson, Paul Lamb and another man referred to as Martin, each of whom was suffering such a distressing and undignified life that he had long wished to end it, but could not do so himself, because of his acute physical incapacity.

Mr Tony Nicklinson suffered a catastrophic stroke when he was aged 51. This left him completely paralysed, save that he could move his head and his eyes. He was unable to fulfil his wish to end his life without assistance because of his condition, other than by self starvation, a potentially protracted exercise, involving considerable pain and distress. His preference was for someone to kill him by injecting him with a lethal drug, such as a barbiturate.

Mr Paul Lamb suffered a catastrophic car crash in 1990. Since then he had been completely immobile, save that he was able to move his right hand. He required carers 24 hours a day, suffered pain every day, and was permanently on morphine. His condition was irreversible and he wished a Doctor to end his life, which he regarded as consisting of a mixture of monotony, indignity and pain.

"Martin" (who wished to maintain his privacy) suffered a brainstem stroke in August 2008, when he was 43. He was also completely unable to move and could only communicate through slow hand movements and via an eye blink computer. His condition was incurable, and despite being devotedly looked after by his wife and carers, he wished to end his life, which he regarded as undignified, distressing and intolerable. Apart from self-starvation, his only way of achieving this would be to travel to Zurich in Switzerland to make use of the Dignitas service, which lawfully under Swiss law, enables people who wish to die to do so. To do that he would need to find out about the service, join Dignitas, obtain his medical records, send Dignitas money, and have someone accompany him to Zurich. His wife did not want to be involved and he did not wish to involve any other member of his family.

In the case, the law was explored and also the whole debate on assisted dying. It quoted the case of Pretty v DPP and the Statement of Lord Steyn at paragraph 54 of that Judgment set out the arguments clearly. Lord Steyn said "the subject of euthanasia and assisted suicide have been deeply controversial for a very long time". He continued:

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"The arguments and counter arguments have ranged widely. There is a conviction that human life is sacred and that the corollary is that euthanasia and assisted suicide are always wrong. This view is supported by the Roman Catholic Church, Islam and other religions. There is also a secular view, shared sometimes by atheists and agnostics, that human life is sacred. On the other side, there are many millions who do not hold these beliefs. For many the personal autonomy of individuals is predominant. They would argue that it is the moral right of individuals to have a say over the time and manner of their death. The terminally ill and those suffering great pain from incurable illnesses are often vulnerable. And not all families, whose interests are at stake, are unwholly unselfish and loving. There is a risk that assisted suicide may be abused in the sense that such people may be persuaded that they want to die or that they ought to want to die. Another strand is that, when one knows the genuine wish of a terminally ill patient to die, they should not be forced against their will to endure a life they no longer wish to endure. Such views are countered by those who say it is a slippery slope or the thin end of the wedge. It is also argued that euthanasia and assisted suicide, under medical supervision, will undermine the trust between Doctors and patients. It is said that protective safeguards are unworkable. The countervailing contentious moral philosophers, medical experts and ordinary people are endless. The literature is vast…..It is not for us, in this case, to express a view on these arguments. But it is of great importance to note that these are ancient questions on which millions in the past have taken diametrically opposite views and still do."

The Supreme Court in Nicklinson ultimately ruled that it was for Parliament, not the Courts, to change the law on assisted dying.

How the debate on assisted dying has developed since the case of Tony Bland. The following summary is taken from the comments of Lord Neuberger in the Nicklinson case (paras 50 – 54). Following the decision in Bland, the House of Lords Committee on Medical Ethics, after receiving evidence, reported that "as far as assisted suicide is concerned" they saw "no reason to recommend any change in the law" (see HL Paper 21-I, 1994, para 26). This was primarily based on "the message which society sends to vulnerable and disadvantageous people", which "should not, however obliquely, encourage them to seek death, but should assure them of our care and support in life" (para 239). The Government in its response agreed on the grounds that a change in the law "would be open to abuse and put the lives of the weak and vulnerable at risk" (1994, Cm 2553, page 5). Its Chairman, Lord Walton of Derchant later described in Parliament their concerns about such legislation. "We concluded that it was virtually impossible to ensure that all acts of euthanasia were truly voluntary and that any liberalisation of the law in the United Kingdom could not be abused. We were also concerned that vulnerable people – the elderly, lonely, sick or distressed – would feel pressure, whether real or imagined, to request early death."

The possibility of relaxing the statutory prohibition on assisted suicide has been debated in the House of Lords and the House of Commons on at least six occasions in the past nine years. After the publication of the HL Paper referred to above, Lord Joffe unsuccessfully introduced the Assisted Dying for the Terminally Ill Bill ("the 2005 Bill") in the House of Lords. Following this, in July 2009, Lord Falconer of Thoroton moved an amendment that would have permitted assisting the "terminally ill" to commit suicide during the debate on the Bill which became the Coroners and Justice Act 2009. During the debate on the 2005 Bill, Lord Joffe made it clear that he did not "support assisted dying for patients who are not terminally ill", and that was reflected in the Bill. During the July 2009 debate on the Bill which became the 2009 Act, the House of Lords defeated the amendment. Their Lordships approved s59 of the 2009 Act, whose purpose was to re-enact s2 of the Suicide Act 1961 in clearer terms.

Following this in September 2010, Lord Falconer set up and chaired a Commission on "Assisted Dying", which took evidence from many individuals and organisations, and the Commission's Report was published in January 2012. Whilst it is a full and balanced report, Lord Falconer is a strong and public supporter of liberalising the law on assisted dying, and it was noted that much of the funding of the commission came from people who took the same view, and some people who were against assisted dying refused to give evidence to the Commission. The evidence from Doctors and other caring professionals was mixed. The views of the medical professional bodies was also mixed, ranging from being against Doctor involvement, via neutral, to being in favour of it.

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The Falconer Report indicated that in three jurisdictions where it was permissible to assist suicide, there was no evidence of vulnerable groups being subject to any pressure or coercion to seek an assisted death. The same view was expressed in the 2011 Report of the Royal Society of Canada Expert Panel on End of Life Decision Making and in the 2012 Report of the Quebec National Assembly 'Dying with Dignity' Select Committee. The Falconer Report concluded that "there [was] a strong case for providing the choice of assisted dying for terminally ill people", while "protecting" them and vulnerable people generally "from the risk of abuse or indirect social pressure to end their lives". However, the members of the Commission were "unable to reach a consensus on the issue of whether a person who has suffered a catastrophically life changing event that has caused them to be profoundly incapacitated should be able to request an assisted death", but they were agreed that people who assisted loved ones and friends in that situation "should continue to be treated by the law with compassion and understanding".

Following the Falconer Report, and the outcome of the Commission on Assisted Dying, Lord Falconer introduced an Assisted Dying Bill in the House of Lords in the 2014 – 2015 Session which reached Committee stage. In summary the Bill was "to enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes".

The Bill sought to legalise assisted suicide (but not euthanasia) for mentally competent adults (18+) with less than six months to live subject to 'safeguards' under a two Doctors' signature model, similar to the Abortion Act 1967.

Death takes place after 14 days by self-administering 'medicine' in the presence of an 'assisting health professional'.

A person qualifying under the auspices of the Bill must:

- Have a clear and settled intention to end his or her life - Be aged 18 or over and resident in England and/or Wales for one year - Have been diagnosed with a terminal illness ('inevitably progressive') and be 'reasonably expected' to die within six months - Have made and signed a witnessed declaration, countersigned by two Doctors who must examine the patient and both record and confirm 'terminal illness', 'mental capacity' and 'clear and settled intention' without 'coercion or duress' and be satisfied that they are informed of 'palliative, hospice and other care available'

During the debate on the Bill he said that the current situation "leaves the rich able to go to Switzerland, the majority reliant on amateur assistance, the compassionate treated like animals".

Following this, Lord Falconer then tabled the Assisted Dying No 2 Bill 2015/2016. The summary of this was:

"A Bill to enable competent adults who are terminally ill to choose to be provided with medically supervised assistance to end their own life; and for connected purposes."

The Bill did not pass its second reading debate on 11 September 2015 and will make no further progress. Under the proposals in the No 2 Bill people with fewer than 6 months to live could have been prescribed a lethal dose of drugs, which they had to be able to take themselves. Two Doctors and a High Court Judge would have needed to approve each case.

So, for now we do not have any up to date legislation on Assisted Dying and the provisions of the Suicide Act 1961 remain in place.

The Care not Killing Alliance have set out a number of general arguments against the legislation of assisted suicide and euthanasia. These arguments are set out as follows:

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- Any change in the law to allow assisted suicide would place pressure on vulnerable people to end their lives for fear of being a financial, emotional or care burden upon others. This would especially affect people who are disabled, elderly, sick or depressed. The right to die can so easily become the duty to die. Current legislation also protects vulnerable relatives from being subtly coerced into assisting a suicide against their better judgement. - The pressure people will feel to end their lives if assisted suicide is legalised will be greatly accentuated at this time of economic recession with families and health budgets under pressure. Elder abuse and neglect by families, carers and institutions are real and dangerous and this is why strong laws are necessary. - Experience in other jurisdictions, such as Belgium, the Netherlands and the American States of Oregon and Washington, shows that any change in the law will lead to 'incremental extension' and 'mission creep' as some Doctors will actively extend the categories of those to be included (from mentally competent to incompetent, from terminal to chronic illness, from adults to children, from assisted suicide to euthanasia). This process will be almost impossible to police. - Euthanasia deaths in the Netherlands have increased by 13-20% per year from 2006 – 2013. Euthanasia now accounts for over 3% of all Dutch deaths. In 2013 there were 42 reports of people who underwent euthanasia because they suffered severe psychiatric problems and 97 cases with dementia. A lancet study indicated that in 2010, 23% of all euthanasia deaths were not reported and that 12.3% of all deaths were related to deep-continuous sedation. Under the Groningen Protocol 22 babies with spina bifida and hydrocephalus were euthanised over a seven year period. - In Belgium, which legalised euthanasia in 2002, there has been a 50% increase in euthanasia deaths over 10 years between 2003 and 2012. High profile cases include Marc and Eddy Verbessem (deaf and blind twins), Nathan/Nancy Verhelst (depressed following gender reassignment) and Ann G (anorexia). Organ donation euthanasia is already practised in Belgium and the country has also extended the programme to minors. - The present law making assisted suicide illegal is clear and right and does not need changing. The penalties it holds in reserve act as a strong deterrent to exploitation and abuse whilst giving discretion to prosecutors and Judges in hard cases. It has both a stern face and a kind heart. - Persistent requests for assisted suicide and euthanasia are extremely rare if people are properly cared for so the priority must be to ensure that good care addressing people's physical, psychological, social and spiritual needs is accessible to all. Patients do change their minds about euthanasia when they experience good care. A good Doctor can kill the pain without killing the patient.

Case Law Update

There have been some high profile cases on assisted dying and the withdrawal of life sustaining treatment over the last 18 months.

The case of Noel Conway (assisted dying)

Noel Conway, a 68 year old man from Shrewsbury with terminal motor neurone disease brought a judicial review which challenged the current law on assisted dying. On 18 January 2018 he was granted permission to appeal an earlier decision to reject his case. The case, which was supported by Dignity in Dying, was rejected by the High Court in October 2017, following a Hearing in July 2017. The Judgment in the High Court confirmed that the Courts do have the authority to make a declaration of incompatibility between the Suicide Act 1961 and Human Rights legislation.

Noel brought the case as he felt that he was being prevented from exercising his right to choice and control over his death under the current law. Without a change in the law it is Noel's belief that he will be forced to suffer against his wishes. He has said that he wants to be able to say goodbye to loved ones at the right time, not to be in a zombie like condition suffering both physically and psychologically. He faces a stark choice – either to seek to bring about his own death now whilst able to do so, or await his death with no control over how and when it comes. If he was able to secure a change in the law he would only want it to apply to adults who are terminally ill with less than 6 months to live and who have a settled wish to die.

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The substantive criteria were as follows:

That the individual:

- Is aged 18 or above; - Has been diagnosed with a terminal illness and given a clinically assessed prognosis of 6 months or less to live; - Has the mental capacity to decide whether to receive assistance to die; - Has made a voluntary, clear, settled and informed decision to receive assistance to die; - Retains the ability to undertake the final act(s) required to bring about their death having been provided with such assistance.

The procedural safeguards would be as follows:

- The individual makes a written request which is witnessed; - The person's treating Doctor has consulted with an independent Doctor who confirms that the above requirements are met (having examined the patient); - A High Court Judge confirms the criteria is met after consideration of the evidence; - Assistance is provided with due medical care; and - The assistance is reported to an appropriate body.

The case was heard by the Court of Appeal in June 2018 which rejected the arguments. The appeal by Mr Conway was for a declaration under Section 4 of the Human Rights Act 1998 in respect of section 2(1) of the Suicide Act 1961, which imposes a blanket ban on assisted suicide. Mr Conway contended that section 2(1) constituted a disproportionate interference with his right to respect for his private life under Article 8(1) of the European Convention for the Protection of Human Rights and Fundamental Freedoms.

The Court of Appeal held that the question to be determined was whether the blanket ban on assisted suicide under Section 2 of the Suicide Act 1961, as amended, was both necessary and proportionate, having regard to all the evidence before the Court and the criteria and safeguards proposed by Mr Conway's alternative statutory scheme. The Court also held that Parliament was a far better body for determining the difficult policy issue in view of the highly contested views within society on the moral and ethical issues raised and the risks and consequences of any changes in the law.

The case of Charlie Gard (withdrawal of life sustaining treatment)

This received much media coverage during 2017. Charlie was born on 4 August 2016. He suffered from an exceptionally rare genetic condition called encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). Although he appeared perfectly healthy when he was born, his health soon began to deteriorate. He had severe brain damage, could not open his eyes or more his arms or legs. He was unable to breathe unaided and had to be on a ventilator. His heart, liver and kidneys were also affected and his Doctor did not know if he felt pain. Charlie was treated at Great Ormond Street Hospital and the view of the Doctors was that they should be allowed to withdraw life-sustaining treatment and they made an Application to the High Court for such an Order to be made. Charlie's parents, Connie Yates and Chris Gard, launched a legal battle against the Doctors asking the Courts to allow Charlie to be allowed to live as they believed that he would improve with certain treatment. They had raised £1.3 million in donations to take their son abroad for treatment. The timeline for Charlie's case was as follows:

3 March 2017: Mr Justice Francis started to analyse the case at a Hearing in the Family Division of the High Court in London

11 April 2017: Mr Justice Francis said that Doctors could stop providing life support treatment

3 May 2017: Charlie's parents asked the Court of Appeal Judges to consider the case

23 May 2017: Three Court of Appeal Judges analysed the case

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25 May 2017: The Court of Appeal Judges dismissed the couple's Appeal. The couple appealed further to the Supreme Court

8 June 2017: Charlie's parents lost their fight in the Supreme Court

20 June 2017: The matter is taken to Europe and the Judges in the European Court of Human Rights start to analyse the case after lawyers representing Charlie's parents make written submissions

27 June 2017: Judges in the European Court of Human Rights refuse to intervene

3 July 2017: The Pope and US President, Donald Trump, offer to intervene

7 July 2017: Great Ormond Street Hospital applied for a fresh Hearing at the High Court

24 July 2017: Charlie's parents end their legal fight to take him to the US for Treatment

In the conclusion of the proceedings Mr Justice Francis paid tribute to Charlie's parents and said no one could comprehend their agony and no parents could have done more. He also explained that in this country children do have rights independent of their parents which is why Charlie had to be separately represented. Charlie's parents ended their fight in July 2017 as the US Doctor who had come over from the US to examine him had told them that it was too late to give Charlie nucleoside therapy. The parents hoped to establish a foundation to ensure Charlie's voice "continues to be heard". Charlie's father at the conclusion of the proceedings said that Charlie was an "absolute warrior". He said "Charlie has had a greater impact on and touched more people in this world in his 11 months than many people do in a lifetime". The hospital also paid tribute to the "bravery" of the decision that Charlie's parents made in July to end the legal battle and to let their little boy die. The hospital said: "The agony, desolation and bravery of their decision command GOSH's utmost respect and humble all who work here". Charlie sadly died on Friday 28 July 2017.

The case of Alfie Evans Alder Hey Children's NHS Foundation Trust v Thomas Evans (1) Ms Kate James (2) Alfie Evans (A child by his Guardian CAFCASS Legal) (3) [2018] EWHC 953 (Fam)

This case received media attention earlier this year. Alfie was the child of Tom Evans and Kate James. He was born in Bootle in Merseyside on 9 May 2016. Alfie was first admitted to the Alder Hey Children's Hospice in Liverpool in December 2016 as he had been suffering from seizures. He remained as a patient until his death in April 2018.

The Doctors diagnosed a degenerative neurological condition. Sadly they were not able to identify it definitively.

Alfie's parents and the Doctors treating him did not agree over what should happen to Alfie. After his seizures he had remained in a semi-vegetative state for over a year. As with any parents, Alfie's parents were desperate to go to any lengths to help their child and they wanted to fly him to a hospital in Italy. However, this was blocked by the hospital in Liverpool. They had come to the conclusion that continuing treatment was no longer in Alfie's best interests.

In order to get a decision made the Alder Hey Children's Hospital NHS Foundation Trust applied to the High Court seeking a declaration that "continued ventilator support is not in Alfie's best interests and in the circumstances it is not lawful that such treatment continue."

Mr Justice Hayden, sitting in the High Court in Liverpool started to oversee the case on 19 December 2017. The evidence from the hospital advised the Court that the scans of Alfie's brain showed catastrophic degradation of his brain tissue. The hospital contended that future treatment was futile. They also thought that any further treatment would be unkind and inhumane for Alfie.

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His parents, perhaps unsurprisingly, disagreed. They still wanted permission to fly him to Rome for treatment in an attempt to prolong his life. On 20 February 2018 Mr Justice Hayden advised that Doctors could stop providing life support for Alfie, against his parents' wishes, saying that the child required "peace, quiet and privacy". The Doctors were then set to withdraw ventilation on 23 February 2018.

Alfie's parents then took the case to the Court of Appeal on 6 March 2018. The Judges in the Court of Appeal upheld Mr Justice Hayden's decision. From there, Alfie's parents took the matter to the Supreme Court and the Judges refused to give the couple permission to mount another Appeal.

In spite of this decision of the Supreme Court, the lawyers representing Alfie's parents then went to the European Court of Human Rights (ECHR) having exhausted the legal process in the UK. The Judges in the ECHR found the submission to them was "inadmissible" and they said they were unable to find any violation of human rights.

On 11 April 2018 Mr Justice Hayden endorsed an end of life care plan for Alfie. He set a date on which to switch off the life support. However, the parents still did not stop their fight for Alfie.

Their lawyers mounted a final legal bid for the parents to be allowed to take control of the treatment of their son on 16 April 2018. They claimed that Alfie was being "unlawfully detained". This was rejected for a second time by both the Court of Appeal and the Supreme Court.

Just two days after this Tom Evans travelled to Rome to meet the Pope, asking him to save Alfie. Following this there was yet another urgent Application to the ECHR where the Judges refused to intervene in the case. The Italian Ministry of Foreign Affairs even granted Alfie Italian citizenship, hoping it would mean that Alfie could be transferred to Italy. Pope Francis tweeted his support for the family.

All of these efforts came to nought as Mr Justice Hayden confirmed that Alfie was a British Citizen and therefore came under the jurisdiction of the High Court. The case had reached its final chapter. Hayden, J rejected claims that Alfie was any better. Alfie's parents launched a further Appeal against the Order which had stopped them taking Alfie to Italy. That Appeal was heard by three Court of Appeal Judges, headed by Sir Andrew MacFarlane (the newly elected President of the Family Division). The Judges upheld the ruling preventing Alfie from travelling abroad and the life support was eventually withdrawn. Alfie died on 28 April 2018.

The Charlie Gard case and the Alfie Evans case shows how emotive the decisions are around the withdrawal of life-sustaining treatment.

It is clear that parents will always do their utmost to protect their children. One of the arguments and the dilemma that the cases have brought into sharp focus is whether the Doctors are the right people to determine if the withdrawing of life support treatment in the best interests of the terminally ill child. The parents in both cases argued that they should decide what was best for their children. It should be noted that The Children's Act 1989 states that the state can and should intervene where it is clear that a child is at risk. What follows is that the rights of the parents are not absolute. The state will intervene and make a challenge if they believe that the views of the parents mean that the best interests of the child are not being protected. What the law does is ensure that a public body has to go to Court if it intends to override the parental responsibility.

An NHS Trust & Ors v Y (by his litigation friend, the Official Solicitor) & Anor [2018] UKSC 46 Judgment made 30/07/18 (on Appeal from [2017] EWHC 2866 (QB))

This case concerned a man, known as Y, who had been a banker in his 50's. He suffered a heart attack, which resulted in him sustaining severe brain damage. He had remained unresponsive after his heart attack in 2017 and there was no chance of recovery.

His family and his Doctors argued that it would be in his best interests to allow him to die by withdrawing artificial nutrition and hydration.

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The NHS went to the High Court asking them to declare that it was not necessary to apply to the Court of Protection for a decision if the Doctors and the family believed it was in the patient's best interests for the treatment to be withdrawn.

The Judge agreed, but the Official Solicitor, who represented Mr Y, appealed. The Appeal was dismissed and even though Mr Y subsequently died it was felt that the case was important enough to take to the Supreme Court so that a ruling could be made. Lady Black gave the sole Judgment in the Supreme Court with which the other Justices agreed.

Lady Black said:

"The Official Solicitor contends in this Appeal that there is in fact an obligation in law to apply for the Court's approval before withdrawing clinically assisted artificial nutrition and hydration from a patient with a prolonged disorder of consciousness, whether or not there is agreement between the patient's family and his Doctors that this course is in his best interests. Today we decide that such an Application is not obligatory and we dismiss the Official Solicitor's Appeal. We find nothing in the common law nor in any Act of Parliament that requires an Application to be made and nor is it necessary to impose such a requirement in order to ensure that there is no violation of rights arising under the Human Rights Convention. Our Judgment reviews the important developments that have taken place since the decision in the Bland case. These include the accumulation of years of clinical expertise in treating patients with prolonged disorders of consciousness and the development of very detailed professional guidance for the medical professional in handing such cases."

In reaching this conclusion it should be noted that for years, and so long as a family agrees, and it is in the best interests of a patient in a minimally conscious or permanent vegetative state, that Doctors have been able to withdraw various treatments if the end result is to bring an end to the patient's life, e.g. if a Doctor wishes to withdraw lifesaving dialysis and it was agreed that this was the right course of action in appropriate circumstances then this could be done without the approval of the Court.

However, it should be noted that the withdrawal of food and water, which are the very basic requirements to sustain life, has been treated differently. Since the Bland case it has been regarded as a matter of good practice to seek the approval of the Court, even when relatives believe it would be in the best interests of the patient. Tied up with this, of course, are the emotional and psychological impacts on a family in making a decision to withdraw sustenance from their loved one.

We have seen a number of Applications made to the Court over the years where an NHS Trust have applied for a declaration from the Court confirming that the Doctors do have permission to withdraw clinically assisted artificial nutrition and hydration. The Courts have not always agreed that the treatment should be withdrawn.

Some commentators have said that patients who have spent prolonged periods in a permanently vegetative state have done so because the NHS Trusts have shied away from going to Court in view of the cost and the red tape involved.

The ruling in the Re Y case is a landmark decision by the Supreme Court and will mean that the Court does not need to be involved in these sort of cases in the future. However, both the Doctors and the families have to be in agreement that the withdrawal of CANH is in the best interests of the patient. If there is any disagreement then it will still be necessary to make an Application to the Court.

The Judgment will raise concerns in some quarters as there will be comment that this Judgment will cut across both ethical and religious beliefs. There will be those who will say that this is a compassionate and humane way to deal with such cases. Is this a slippery slope to protecting a very vulnerable group of people in our society who cannot speak for themselves?

Time will tell to see if there are any further developments and how public opinion will shape a very difficult and controversial area. Has the Re Y case removed all the safeguards for those who are presently in either a minimally conscious or permanent vegetative state? If the Official Solicitor no longer is a voice for them, then it seems there will be no one to represent them in this life and death decision.

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Euthanasia

The term 'assisted dying' or 'assisted suicide' needs to be distinguished from the term 'euthanasia'. The definition of euthanasia is as follows:

"The act of facilitating death in a terminally ill patient, whether by deliberate activity such as the administration of drugs that hasten death (known as active euthanasia) or passive (as in the withholding of life extending treatment). It is sometimes referred to as mercy killing."

Active euthanasia is illegal in most jurisdictions including the jurisdiction of England and Wales. In England and Wales it is treated as manslaughter or murder and therefore life imprisonment can be the punishment (of assisted suicide where the maximum term of imprisonment is 14 years). The law is almost identical in Northern Ireland. There is no specific law on assisted suicide in Scotland, creating some uncertainty, although in theory someone could be prosecuted under homicide legislation.

Euthanasia usually falls into three categories:

- Voluntary - where a competent patient requests it - Involuntary – where a competent patient is not consulted - Non-voluntary – where the patient is not competent to make the request (e.g. he or she is in a coma or suffering from the advanced stages of dementia)

The main arguments against legalising euthanasia are as follows:

1. It is unnecessary – because alternative treatments exist 2. Dangerous – it is putting vulnerable people at risk 3. Wrong – contrary to all historical codes of ethics

The main arguments for legalising euthanasia are as follows:

1. We want it – the autonomy argument 2. We need it – the compassion argument 3. We can control it – the public policy argument

The early debates on euthanasia centred on the compassion argument, but because of cultural changes and the success of palliative care, it has moved to arguments based on autonomy. Autonomy means 'self-determination' and the language heard now in the euthanasia debate is often that of choice, control, freedom and rights. The euthanasia lobby's thrust has moved from euthanasia as a needed response to symptoms, to euthanasia as an autonomous choice by those with, for example, degenerative diseases.

Euthanasia is certainly against the Hippocratic Oath sworn by Doctors ("I will give no deadly medicine to anyone if asked"). It also runs contrary to the Judeo-Christian ethic on which our laws are based. The belief that euthanasia is wrong is also present in Judaism, Islam, Sikhism, Buddhism and Hinduism. In view of the difficulties in getting voluntary euthanasia accepted, it seems that the pro- euthanasia lobby has directed its attention to the seemingly softer target of physician assisted suicide ('assisted dying'). Doctors have historically always been opposed to both euthanasia and assisted dying. As well as the Hippocratic Oath, both are forbidden in the more recent codes of ethics such as the Declaration of Geneva and the International Code of Medical Ethics. It is believed that the majority of Doctors in the UK remain opposed to assisted dying and euthanasia. The British Medical Association opposes all forms of assisted dying, while the Royal College of Nursing takes a neutral stance. Based on a survey of its members in 2014, the Royal College of Physicians says it does not believe a change in the law is necessary.

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Assisted Dying and Euthanasia around the world

Assisted dying is illegal in Britain and in most other countries in the world. Euthanasia is legal only in The Netherlands, Belgium and Luxembourg, while physician assisted suicide is legal in The Netherlands and the US States of Oregon, Washington, Montana, Vermont and California. The latest official figures recorded 6091 cases of euthanasia in the Netherlands in 2016 and 2022 in Belgium in 2015. In October 2015 the California Governor, Jerry Brown, signed legislation that provides terminally ill patients the right to die. In May 2015 a Dutch Court cleared a man of all criminal charges for assisting his 99 year old mother to commit suicide. In April 2015, a South African Judge ruled that a terminally ill man had a right to assisted suicide with no legal or professional consequences for the participating Doctor. In February 2015, the Supreme Court of Canada struck down the Country's ban on medically assisted suicide. Assisted suicide has been legal in Switzerland since 1942 but not as part of the health care system or specifically within the context of serious illness. Some types of assisted suicide and passive euthanasia are also legal in Germany, and Mexico.

In Canada, legally assisted dying became legal as of 17 June 2016. To receive a medically assisted death patients experiencing intolerable suffering must sign a written request expressing their wish to end their life in front of two independent witnesses who can both confirm it was done willingly and free of coercion, 10 clear days before the date of death. Next, two physicians and/or nurse practitioners must independently confirm their written agreement that the patient has an incurable grevious and irremediable medical condition that is in an advanced state of irreversible decline, that the patient's death is reasonably foreseeable, and that the patient is capable and willing of receiving a medically assisted death. If they are eligible, patients must be informed about their palliative care options to relieve end of life suffering before they can die.

In 2013 no less than three Australian Governments considered bills advocating voluntary euthanasia (Tasmania, NSW and Western Australia). In 2017 the state of Victoria introduced detailed proposals for a Victorian assisted dying law for people with advanced and incurable illnesses. Critically, this is a government sponsored process. To be eligible you will have to be at least 18 and of sound mind. You will have to have been "diagnosed with an incurable disease, illness or medical condition" that is advanced and will cause death within 12 months. You will also have to be an "ordinary resident of Victoria" and an Australian citizen or permanent resident, and your condition must be causing suffering that is unacceptable to you. The process has several steps – an initial request to a Doctor, an independent assessment by another Doctor (one of the Doctors is to have expertise in the illness or condition), a written request before witnesses, and a last and final request. Dementia patients will not be able to access the laws, and a person with mental illness alone will not be eligible.

In January 2016 France's Parliament approved a Bill that will let Doctors keep terminally ill patients sedated until death – but stops short of legalising euthanasia or assisted suicide. The new law will allow patients to request "deep continuous sedation altering consciousness until death" but only when their condition is likely to lead to a quick death. Doctors will be allowed to stop life sustaining treatment, including artificial hydration and nutrition. Sedation and painkillers will be allowed "even if they may shorten the person's life". The law will also apply to patients who are unable to express their Will, following a process that includes consultation with family members. The new Bill will also force Doctors to follow end of life instructions regarding terminal sedation and stopping treatments, whether they are expressed by the persons themselves or written in advance. People can designate a "trustworthy person" whose opinion would be predominant in case of patients who are no longer able to express their will. The Bill specifies that patients can choose to be sedated at home or in hospital.

In November 2015, Germany passed a law which permits assisted suicide for "altruistic" motives but not for "business" ones. The law allows someone to assist a suicide on an "individual basis out of altruistic motives" but "criminalizes commercial euthanasia" with assisting a suicide for "business" reasons an offence punishable by up to 3 years in prison. In March 2017 the Federal Administrative Court in Leipzig (which is the highest Court in Germany for disputes between citizens and the state) issued a landmark decision in the case of Koch. It ruled that in extreme situations the state cannot deny an individual access to medication that would allow a painless suicide.

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In June 2017 the regional Parliament of Spain's Catalonia region presented a draft Bill before the Spanish Congress aimed at decriminalizing euthanasia. It is proposing to modify the penal code in Spain and has widespread support. The change to the penal code would mean that euthanasia and assisted suicide would no longer be criminal offences.

This year in Portugal, the Parliament considered two Bills that would legalise euthanasia and assisted suicide. The Bills were narrowly rejected in May 2018. The Country's two main parties, the Socialists and the main opposition Social Democratic Party, allowed their lawmakers to vote according to their conscience.

As can be seen, the debates on euthanasia and assisted suicide are going on all around the world and the controversial issues surrounding the subject are similar wherever the debate goes on.

Terminally ill patients who wish to die

For terminally ill people who wish to die, the right to refuse life-prolonging treatment (including nourishment and hydration) is firmly established in law. If a patient chooses to shorten his life by refusing treatment, that would not be considered an assisted death.

The provision of nutrition and fluids can be given artificially through intravenous feeding, and feeding by the use of a nasogastric tube and also by gastrostomy (feeding through the stomach by tube). It can also be provided by intravenous or subcutaneous infusion of fluids through a ‘drip’. The health care professionals will always balance the benefits and the burdens of such medical treatment. They will advise on whether providing artificial nutrition and hydration is of benefit to the patient.

However, if the patient has mental capacity to make the decision then the health care professional should follow their wishes where the patient does not want to receive treatment, even if that goes against what the doctor may feel is in the best interests of the patient. On the other hand, if the patient wants the treatment and the doctor believes it is not clinically appropriate they will have to follow various procedures.

If the patient has made a valid and applicable advance medical decision refusing such treatment, then it cannot be provided to the patient. If the patient lacks capacity but has a registered LPA for health and welfare and the attorneys have authority to give or refuse life sustaining treatment, then the attorneys can give or refuse consent if they think it is in the Donor’s best interests. If neither document is available, then the doctor will make the decision based on the patient’s best interests. In doing so, they should consult those interested in the patient’s welfare, e.g. carers and relatives. They need to consider the previously known wishes of the patient if these can be established and also the patient’s current wishes.

The way that cases are going concerning end of life treatment

A number of Judgments (mainly in English Courts) have shown that the Courts do not consider that protecting life always takes precedence of other considerations. The case law establishes a number of relevant principles. The key points are set out below: -

1. An act where the Doctor’s primary intention is to bring about a patient’s death would be unlawful (R v Cox (1992) 12 BMLR 38) (but note the very rare exception in the case of conjoined twins Re: A (Children) (Conjoined Twins: Surgical Separation) (2000) 4 AER 961.

2. A competent adult patient may decide to refuse treatment even where refusal may result in harm to themselves or in their own death (Airedale NHS Trust v Bland [1993] 1 AER 821). This right applies equally to pregnant women as to other parties, and includes the right to refuse treatment where the treatment is intended to benefit the unborn child (St George’s Healthcare Trust v S (No. 2), R v Louise Collins & Others, ex parte S (No. 2) [1993] 3 WLR 936). Doctors are bound to respect a competent refusal of treatment and, where they have an objection to the decision, they have a duty to find another Doctor who will carry out the patient’s wishes (Re: Ms B v a NHS Hospital Trust [2002] EWHC 429 (Fam)).

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3. Life prolonging treatment may lawfully be withheld or withdrawn from incompetent patients when commencing or continuing treatment is not in their best interests (Airedale NHS Trust v Bland [1993] 1 AER 821).

4. There is no obligation to give treatment that is futile and burdensome (Re J (a Minor) (Wardship: Medical Treatment) [1990] 3 AER 930).

5. Where an adult patient has become incompetent, a refusal of treatment made when the patient was competent must be respected, provided it is clearly applicable to the present circumstances and there is no reason to believe that the patient had changed his/her mind (Airedale NHS Trust v Bland [1993] 1 AER 821). Also Re T (Adult: Refusal of Treatment) [1992] 4 AER 349 and Re AK (Medical Treatment: Consent) [2001] 1 FLR 129. Also W Healthcare NHS Trust v H [2005] 1 WLR 834.

6. For children or adults who lack capacity to decide, in reaching a view on whether a particular treatment would be more burdensome than beneficial, assessments of the likely quality of life for the patient with or without the particular treatment may be one of the appropriate considerations. (Re B [1981] 1 WLR 421; Re C, (a Minor) [1989] AER 782; Re J, (a Minor) (Wardship: Medical Treatment) [1990] 3 AER 930; Re R (Adult: Medical Treatment) [1996] 2 FLR 99).

7. The ‘intolerability’ of treatment is not the sole test of whether treatment is in a patient’s best interests. The term ‘best interests’ encompasses medical, emotional, and all other factors relevant to the patient’s welfare (Wyatt & Anor v Portsmouth Hospital NHS & Anor [2005] EWCA Civ 1181; Burke v GMC [2005] EWCA Civ 1003; An NHS Trust v MB [2006] EWHC 507 (Fam)).

8. A patient’s best interests may be determined as meaning that a patient should not be subjected to more treatment than is necessary to allow him/her to die peacefully and with dignity (NHS Trust v Ms D [2005] EWHC 2439 (Fam); Burke v GMC [2005] EWCA Civ 1003).

9. All reasonable steps should be taken to overcome challenges in communicating with or managing the care of patients with disabilities, to ensure that they are provided with the treatment they need and which would be of overall benefit to the patient (An NHS Trust v S & Others [2003] EWHC 365 (Fam)).

10. Where Clinicians and a child’s family are in fundamental disagreement over the child’s treatment, the views of the Court should be sought (Glass v The United Kingdom (ECHR, 2004)).

11. If a patient requires a treatment which their doctor had not offered and the Doctor concludes that the treatment will not provide overall clinical benefit to the patient, the Doctor is not obliged to provide it, although he/she should offer to arrange a second opinion. (Re J (a Minor) (Child in Care: Medical Treatment) [1992] 2 AER 614; Burke v GMC [2005] EWCA Civ 1003).

12. Where artificial nutrition and hydration is necessary to keep a patient alive, the duty of care will normally require the Doctor to provide it, if a competent patient wishes to receive it. (Burke v GMC [2005] EWCA Civ 1003).

13. Artificial nutrition and hydration may be withheld or withdrawn where the patient does not wish to receive them; or where the patient is dying and the care goals change to palliation of symptoms and relief of suffering; or where the patient lacks capacity to decide and it is considered that providing artificial nutrition and hydration would not be in the patient’s overall interests. (Burke v GMC [2005] EWCA Civ 1003; NHS Trust v Ms D [2005] EWHC 2439 (Fam)).

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14. In the case of patients in a permanent vegetative state (PVS), artificial nutrition and hydration constitute medical treatment and may be lawfully withdrawn in certain circumstances. A Court Declaration can be obtained (Airedale NHS Trust v Bland [1993] 1 AER 821; Law Hospital NHS Trust v Lord Advocate 1996 SLT 848). But see the recent landmark case of An NHS Trust & Ors v Y (by his Litigation Friend, the Official Solicitor) & Anor [2018] UKSC 46.

15. Responsibility rests with the Doctor to decide what treatments are clinically indicated and should be provided to the patient, subject to a competent patient’s consent to treatment or, in the case of an incompetent patient, any known views of the patient prior to becoming incapacitated and taking account of the views offered by those close to the patient. (Re J (a Minor) (Child in Care: Medical Treatment) [1992] 2 AER 614; Re G (Persistent Vegetative State) [1995] 2 FLR 46).

16. When the Court is asked to reach a view about withholding or withdrawing a treatment, it will have regard to whether what is proposed is in accordance with a responsible body of medical opinion. But the Court will determine for itself whether treatment or non-treatment is in the patient’s overall interests. (Re A (Male Sterilisation) [2000] FLR 193; Re S (Adult Sterilisation) [2000] 2 FLR 389).

Potential risks associated with a change in the Law

There are arguments that have been put forward that once a particular practice has been deemed acceptable on principle, we will be committed to subsequently accepting other related practices as there is no clear argument for rejecting the related practices once we have agreed to the principle.

This could mean for example, that if there was a change in the law to permit physician assisted suicide for a certain group (eg terminally ill patients) it might logically commit to future extensions in the law to permit other groups who are not terminally ill to have an assisted suicide (eg disabled, seriously ill). If the potential extensions that could take place are morally hazardous then it is deemed that the initial change in the law is also too dangerous to be permissible. There is a further argument that if assisted suicide is legalised then this concedes the point that it is better for some people, such as the terminally ill, to end their lives. This could then lead to a social tolerance for voluntary euthanasia (for those who cannot physically end their lives) and then for non-voluntary euthanasia (eg for mentally ill people whose lives are deemed not to be worth living).

Other arguments include for example that if assisted suicide is legalised within certain parameters, then this could cause a change in patients’ expectations and medical culture, leading to a situation in which euthanasia seems increasingly acceptable. And how about the definitions? Legal definitions of “terminal illness”, “unbearable suffering” or “mental competence” could become open to a more elastic interpretation and then not strictly adhered to in practice.

The doctor-patient relationship is one founded primarily on trust and opponents to a change in the law argue that by taking on the additional role of assisted dying, trust could be lost and the doctor-patient relationship damaged.

Legal options going forward

There are various options that will need to be considered concerning the practical aspects of assisted dying legislation. The main options are:-

1. No change in the law i.e. keep the status quo rather than changing the law and trying to establish a legal framework for permitting some form of assisted dying, or revert to a position in which assisted suicide was less clearly decriminalised.

2. A change in the law to revert to the previous status quo – The legal status quo prior to the DPP policy was preferable (i.e. “wilful blindness”) as assisted suicide was still clearly a criminal action, but the DPP was able to exercise discretion in whether a prosecution should go ahead. Therefore, the law should be tightened up to make it clear that assisted suicide is not condoned by the law.

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3. A change in the law to establish a process for medically-assisted dying – an argument for changing the law to allow some form of medically-assisted dying in some legally-defined circumstances. They would have to be defined, and so should the nature of the medical professional’s involvement.

4. A change in the law to establish a legally-driven process for assisted dying – This would need a tribunal to be established to consider applications for an assisted death and whether these met legally defined criteria. This would require some level of medical involvement in performing assessments and prescribing or administering medication. The extent and nature of doctor involvement would need to be defined.

5. A change in the law to legalise both medical and non-medical assisted suicide – according to this course of action assisted suicide would be legalised in certain circumstances but the law would not specify who would be responsible for facilitating assisted suicide, or prescribe a particular process to be followed (this resembles the current situation in Switzerland).

Medical intervention at the end of life

Cardiopulmonary Resuscitation

One of the most contentious issues surrounding end of life care in hospitals is the use of cardiopulmonary resuscitation (CPR), an emergency procedure for people in cardiac arrest or respiratory arrest.

CPR is widely seen as a lifesaving intervention, perhaps because of its frequent use in TV dramas in the UK such as Casualty and ER. Many studies show undue optimism among medical staff in CPR success rates. In one, the 269 doctors responding reported a mean expected survival rate after CPR of 65 per cent. Yet CPR is overwhelmingly associated with death. Its success rate among older people is very low. Only 9.6% of people aged over 80 will leave hospital after undergoing CPR. One-third to one-half of hospital survivors of CPR will have some, moderate to severe functional or neurological impairment.

One study found the use of CPR at the end of life had a ritual component to it, to show that everything possibly had been done before someone dies.

The performance serves as a marker by drawing attention to the significance of what is occurring and, in actually undertaking the actions, attention is diverted away from the proximity and finality of death. The performance itself appeases quasi-legal concerns by showing committed intervention, it offers a degree of solace to the family that everything was tried and it reinforces the staff their role in these circumstances.

‘Do Not Attempt Cardio Pulmonary Resuscitation Decisions’ (DNACPR)

1. Definition A ‘Do not attempt Cardio Pulmonary Resuscitation’ Order (DNACPR) is a note on the file of the patient indicating that they do not want to be resuscitated should their heart stop. This means that a doctor is not required to use cardiopulmonary resuscitation (CPR) to restart the heart. It is designed to prevent unnecessary suffering as resuscitation can have serious effects including broken ribs, other fractures, ruptured spleen and brain damage.

The usual circumstances in which it is appropriate not to resuscitate are:- • when it will not re-start the heart or breathing; • when there is no benefit for the patient; and • when the benefits are outweighed by the burden.

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Some commentators regard DNACPR as a form of passive euthanasia and believe that patients who request this order are ensuring their own death. The medical establishment, however, views DNACPR Orders as the patient’s choice. A DNACPR Order applies only to CPR and does not imply that other treatments will be stopped or withheld. All other treatment and care which provide benefit for the patient will be continued.

2. DNACPR Guidelines In the UK there are multiple guidelines in place – GMC, BMA and NHS Trusts for example – governing when a DNACPR Order may be issued. The guidelines include: • If a resuscitation attempt is unlikely to be successful • If the patient themselves with capacity has stated that they do not wish to be resuscitated and the preference is recorded in writing; • If the patient has an advance decision stating that they do not wish to be resuscitated; • It is believed that resuscitating the patient would lead to a worse quality of life. In the UK, NHS Trusts must ensure: • An agreed resuscitation policy that respects patients’ rights is in place. • A non-executive director is identified to oversee implementation of the policy. • The policy is readily available to patients, families and carers. • The policy is put under audit and regularly monitored.

There are no guidelines regulating when a patient can request a DNACPR Order.

The GMC’s guidelines on withholding and withdrawing life-prolonging treatment (paragraphs 84 to 94) give advice to practitioners about how to have discussions about CPR with a patient and their family.

CPR

For the medical profession, a decision about whether CPR should be attempted is made only after careful consideration of all relevant factors and usually in discussion with the patient and those close to patients who lack capacity to decide. Relevant factors include: -

(a) The likely clinical outcome, including the likelihood of successfully restarting the patient’s heart and breathing for a sustained period, the level of recovery that can realistically be expected after successful CPR and whether cardio-respiratory arrest is likely to recur.

(b) The patient’s known and ascertainable wishes, including any information about previously expressed views, feelings, beliefs and values.

(c) The patient’s human rights, including the right to life, and the right to be free from degrading treatment.

(d) The likelihood of the patient experiencing severe unmanageable pain or other distressing side effects as a result of successful CPR.

(e) The level of awareness the patient has of their existence and surroundings.

Where patients lack capacity to make a decision about future CPR, the views of members of the Healthcare Team involved in the patient’s care, including those who see the patient at home or in other healthcare settings, may be valuable in forming a view about the likely clinical effectiveness of attempting CPR and the likely overall benefits to the patient.

(Cardiopulmonary resuscitation – standards for clinical practice and training. Joint Statement from the Royal College of Anaesthetists, the Royal College of Physicians of London, the Intensive Care Society and the Resuscitation Council (UK). Available at www.resus.org.uk).

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3. Proper use of DNACPR The Resuscitation Council, BMA and Royal College of Nursing issued a joint statement on decisions relating to CPR in October 2007 following the coming into force of the Mental Capacity Act. This was updated to its 3rd edition in October 2014, which made the following points: • There is a presumption in favour of CPR when there is no DNACPR decision in place • The instructions of an Attorney under a valid and applicable LPA Health and Welfare or directions given under a valid and applicable advance decision to refuse medical treatment should be respected. • A Welfare Deputy should also be consulted about CPR decisions. • Neither a Welfare Attorney nor a deputy can demand treatment which is clinically inappropriate but where CPR may be able to re-start the heart and breathing for a sustained period and a decision on whether or not CPR is based on the balance of benefits and burdens, the views of Attorneys and Deputies about patient’s likely wishes must be sought. • Where there is a disagreement between the healthcare team and the appointed attorney or deputy about whether CPR is appropriate, a Court decision may be required.

The BMA, the Resuscitation Council and the Royal College of Nursing further updated their guidance in 2016. The key ethical and legal principles that should inform all CPR decisions remain but even greater emphasis has been placed on ensuring high quality timely communication, decision making and recording in relation to decisions about CPR.

Under the Mental Capacity Act, health and social care staff are expected to understand how the Act works in practice and the implications for each patient for whom a DNACPR decision has been made.

The following sections of the Human Rights Act 1998 are relevant when contemplating the making of a DNACPR decision:

• The individual's right to life (article 2) • To be free from inhuman or degrading treatment (article 3) • Respect for privacy and family life (article 8) • Freedom of expression, which includes the right to hold opinions and receive information (article 10) • To be free from discriminatory practices in respect to those rights (article 14).

4. Practical issues for clients 1) There may need to be the involvement of an Independent Mental Capacity Advocate (IMCA). An IMCA only needs to be consulted about all decisions about ‘serious medical treatment’ where the patient lacks capacity and has no one to speak on their behalf and the decision is made by an NHS body or local authority. The definition of ‘serious medical treatment’ includes circumstances where what is proposed would be likely to involve serious consequences for the patient – this includes CPR but question whether the position is affected depending on whether CPR has a realistic chance of success or not.

2) The BMA issues a model patient information leaflet about decisions about CPR. See www.bma.org.uk/ethics/cardipulmonaryresuscitation/CPR/patientinformation This might be a good starting point for discussion with clients about whether they would wish a DNACPR Order to be in place.

3) There has been periodic Press Comment (cf Age Concern report – 2000) about DNACPR Orders being incorrectly recorded in patient notes. Clients have access to their medical records and if there is any doubt as to whether there is a DNACPR Order in place in the patients’ notes this should be checked, obviously as a matter of urgency.

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4) The clear guidelines on DNACPRs had to be firmly restated in 2000 after a number of seemingly healthy patients discovered that they had “do not resuscitate” or DNR orders written in their medical notes without consultation with them or their relatives. There was further concern when it emerged that junior doctors had sometimes made DNACPR decisions because senior doctors were unavailable.

5) A DNACPR Order only relates to CPR. It will not be treated as a decision to refuse any other kind of treatment. Consideration of a DNACPR Order being placed in a patient’s notes, therefore, should be co-ordinated with the provisions of any advance decision to refuse medical treatment and the terms of an LPA Health and Welfare and discussions with the attorney under that document.

Case Law

In the case of R. (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] (http://www.theguardian.com/society/2014/jun/17/hospital-patient-rights-do-not-resuscitate- addenbrookes ) the family of a woman who died in one of Britain's best-known hospitals won their claim that her rights were violated when an order not to attempt resuscitation was put on her medical records without her being consulted.

The case centered on how the first of two DNACPRs was placed on Janet Tracey. It was cancelled five days later after it was challenged by her family. David Pannick, QC for the trust, had argued in court that though there was a "general desirability" to consult, "a caring doctor" might well have spared Tracey a discussion which was going to cause distress for no good reason.

Lord Dyson, the Master of the Rolls, rejected arguments that a failure to consult Tracey or her family did not breach article 8 of the European convention of human rights.

"A decision as to how to pass the closing days and moments of one's life and how one manages one's death touches in the most immediate and obvious way a patient's personal autonomy, integrity, dignity and quality of life."

But Dyson said the court should be slow to give general guidance as to the circumstances in which it was not appropriate to consult a patient in relation to a DNACPR decision.

The judgment added that when it came to a decision "which will potentially deprive the patient of life- saving treatment, there should be a presumption in favour of patient involvement" and convincing reasons would be needed not to involve them. The trust had not demonstrated these.

Nearly seven in 10 people die in hospital and 80% of those die with so-called DNR or DNACPR notices in place. Cardiopulmonary resuscitation, attempting to restore breathing or blood flow to critically-ill patients, is often a violent process with rib fractures and brain injury significant risks. But although the law makes clear the final word on such issues lies with medical staff, there has been an apparent lack of clarity over just how far they have to go in consulting a patient with mental capacity or their families about their wishes.

There was a case in 2015 specifically dealing with the use of a DNACPR notice which looks at the interaction of the MCA 2005 with the Human Rights Act 1998. The case was:

Elaine Winspear (Personally & On Behalf of the Estate of Carl Winspear, Deceased) v City Hospitals Sunderland NHS Foundation Trust (2015) EWHC 3250 QB

The principles in R (on the application of Tracey) v Cambridge University Hospitals NHS Foundation Trust [2014] EWCA Civ 822 [2015] QB 543 were said to apply to adult persons who lacked capacity. Before making a decision not to attempt Cardio Pulmonary Resuscitation, it was necessary to consult a person identified in the Mental Capacity Act 2005, s4(7), if practicable and appropriate. In the absence of a convincing reason not to consult, failure to meet the requirements of s4(7) would violate the patient's rights under ECHR article 8.

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In the Winspear case, a mother claimed that the defendant NHS Trust had breached her son's rights under ECHR article 8 by placing a DNACPR notice on his clinical record without consulting her. Her son was a 28 year old who suffered from various health conditions including cerebral palsy, epilepsy and spinal deformities. He lacked capacity within the meaning of the MCA 2005. He had been admitted to hospital with a chest infection. During the early hours of the morning, a specialist Registrar in Cardiology had placed the notice on the son's record without consulting the mother or any person representing his best interests. The Registrar had not considered there was an imminent risk of cardiac or respiratory collapse, but had made the decision because he considered that CPR would be futile in the event of a cardiac arrest. A note was made to speak to the family in the morning. Accordingly, a Consultant Cardiologist spoke to the mother the next day and she strongly disagreed with the suggestion that CPR should not be attempted. As a result, the notice was cancelled, nine to ten hours after being put in place.

The Court held that a DNACPR decision engaged an aspect of the duty of respect for the private life of a patient under article 8. Carl was not able to express any view himself on treatment, in view of his lack of capacity. However, his mother was clearly someone engaged in caring for her son and was interested in his welfare. Under s4(7) of the MCA, the Trust had therefore been required to take account of her views if practicable and appropriate to do so. There was nothing in either the earlier Tracey case, or in Strasbourg case law to suggest that the concept of human dignity applied any less in the case of a patient without capacity. The core principle of prior consultation applied before a decision not to attempt CPR was put into place. If it was not practicable or appropriate to consult a person identified in s.4(7) before the decision was made or acted on, there would be a convincing reason to proceed without consultation. If, on the other hand, it was both practicable and appropriate to consult then in the absence of some other compelling reason against consultation, the decision to file the notice on the patient's medical records would be procedurally flawed as it would not meet the requirements of s.4(7). It would not be in accordance with the law and would be an interference with art.8(1) that was not justified under art.8(2). In the Winspear case, there was nothing in the clinical notes to suggest that the registrar had considered his duty to contact the son's carer under s.4(7). There was every reason why a telephone call during the night might be less convenient or desirable than a meeting in office hours, but that did not mean it was not practicable. Although the registrar might have considered that CPR would have been futile, that did not obviate the need for consultation for patients without capacity. It had been practicable and appropriate to attempt to contact the mother before affixing the notice to her son's records. The trust argued that the registrar had reasonably believed that the notice would be in the son's best interests under s.5(1)(b) of the Act. However, a best interests decision meant something broader than clinical judgement and normally required consultation. The trust had breached its duty under s.4(7) and there was no s.5(2) defence to the claim. The trust had violated its procedural duty under art.8(2). Tracey followed (see paras 25, 28, 32-33, 38-39, 42, 45-47, 49-50, 53, 57-59 of judgment). The mother was not entitled to just satisfaction by a personal claim for damages. Her legitimate interest was as the son's carer and it was his best interests and right to respect for private life that had been under consideration. A declaration that there had been a procedural breach of art.8 was sufficient satisfaction for the mother: the decision had been made before the law had been clarified in Tracey; the good faith of the registrar's clinical judgement was not in dispute; consultation had always been foreseen; the notice only subsisted for nine to ten hours; and the notice had no impact on the son's actual treatment (paras 63 – 64).

The Gold Standards Framework

The Gold Standards Framework (GSF) aims to improve the quality of care for people in the last years of their lives. Originally developed in 2000 for use in primary care, the framework is now used in a wide variety of settings including care homes. GSF is an attempt to formalise and export hospice practice and philosophy to other settings.

The GSF is recommended as best practice by the Department of Health and End of Life Care Strategy, NICE, The Royal College of General Practitioners, the Royal College of Nurses and other major policy groups.

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GSF is described on their website as:

A systematic common-sense approach to formalising best practice, so that quality end of life care becomes standard for every patient. It helps clinicians identify patients in the last years of life, assess their needs, symptoms and preferences and plan care on that basis, enabling patients to live and die where they choose. GSF embodies an approach that centres on the needs of patients and their families and encourages inter-professional teams to work together. GSF can help co-ordinate better care provided by generalists across different settings.

GSF aims to provide:

• Consistent high quality care • Alignment with patient’s preferences • Pre-planning and anticipation of needs • Improved staff confidence and teamwork • More home based, less hospital based care

The framework covers communication, co-ordination, control of symptoms, continuity out of hours, continued learning, carer support and care in the dying phase.

GSF contains several tools that have helped to provide good end of life care. One which is often referred to as the “surprise question” asks professionals to code patients based on if they would be surprised if a person died in different time periods. This seems to be enabling professionals to communicate with one another more effectively.

The extra awareness this creates makes it possible for anticipatory prescribing of medicines and pain relief for “just in case boxes” in homes and care homes. These drugs are then available if there is a need. A system of needs – based colour coding is used for prognosis.

A survey of GSF usage in care homes found that crisis admissions to hospital in the last six months of life had reduced from 37.8% before adopting GSF to 26.3% shortly after adoption. The Framework was reviewed and updated in 2014 to include new training pathways in an attempt to meet the needs of a greater number of homes, offer virtual learning or more intensive workshops to support staff.

NHS End of Life Care Strategy

NHS Spending – End of Life Services

The NHS spends about £20 billion a year on care for people at the end of life, equivalent to 19.6% of the NHS budget or 1.4% of GDP. By 2030, all else being equal, that cost will rise close to £25 billion, mainly as a result of a larger number of people spending more time in hospital. Yet for many families hospital provides a distressing way to die and many of those who die in hospital are not receiving medical treatment that requires them to be in hospital. An investment of £500 million a year over ten years, just 2.5% of the amount we currently spend on NHS End of Life Services, could create the backbone for a system to allow many more people to die at or close to their homes with the support of their families and friends. Not only would this enable more people to achieve something like a “good death” but it would do so at lower direct cost to the taxpayer.

NHS England Actions for End of Life Care: 2014 - 2016

The first national End of Life Care Strategy (2008) generated significant momentum and energy, which led to significant improvement in end of life care. The 2008 strategy needed to be refreshed to align it with the current needs of the population and the changing health and social care landscape, and the passing of the Health and Social Care Act 2012. The document "Actions for End of Life Care: 2014 – 2016" sets out the commitments of the NHS to end of life care for adults and children. The definition of 'end of life care' used in the original strategy (the last year of life) is retained. The Department of Health has also issued guidance which highlights the priorities for care of the dying person. The approach should be applied irrespective of the place in which someone is dying: hospital, hospice, own or other home and during transfers between different settings [One Chance to get it Right – 2014].

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The five priorities of care set out in the "One Chance to get it Right" guidance are as follows:

1. This possibility (that a person may die in the next few days or hours) is recognised and communicated clearly, decisions made and actions taken in accordance with the person's needs and wishes, and these are regularly reviewed and decisions revised accordingly.

2. Sensitive communication takes place between staff and the dying person, and those identified as important to them.

3. The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

4. The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

5. An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

NHS England's mandate from the Government for 2013 – 2015 included an objective "to pursue the long term aim of the NHS being recognised globally as having the highest standards of caring, particularly for older people and at the end of people's lives".

NHS England have a dual role:

• Providing leadership and support to Clinical Commissioning Groups as commissioner of secondary and community services for end of life care services, including specialist palliative care.

• Direct commissioning of services which incorporate end of life care, e.g. in primary care and for people in secure and detained settings.

They have made a number of commitments, which are set out in "Everyone Counts: Planning for Patients 2014/15 to 2018/19. These include:

• Improving the health related quality of life of the 15+ million people with one or more long term conditions, including mental health conditions.

• Reducing the amount of time people spend avoidably in hospital through better and more integrated care in the community, outside of hospital.

• Increasing the number of people with mental and physical health conditions having a positive experience of hospital care.

• Increasing the number of people with mental and physical health conditions having a positive experience of care outside hospital, in general practice and in the community.

• Reducing health inequalities.

The Actions for End of Life Care document says:

"Death is an inevitable part of life. Living with a progressive, life-limiting illness, dying, death and bereavement involve not only the individual, their families, carers and those close to them, but also the communities within which they live. Wider societal attitudes to death, dying and bereavement influence the way conversations occur about different aspects of end of life care, and the way we shape our personal and communal response – voluntary and statutory. It is particularly important to recognise the diverse needs of different groups of people within our society, some of whom have limited opportunity or capability to voice their own views or needs, which may differ from the majority position."

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NHS England have said that the best possible end of life care depends on the best possible use of information relating to that care. The use must be lawful, but they say that the law and best practice will never impede good care. They say that for all end of life care programmes:

• A full and accurate record must be made of the care and support, and all the discussions and decisions that go with it, from day to day.

• The person must have full access to the information (unless that is likely to cause him or her harm).

• The person must be fully informed about the intended uses of the information including who it may be shared with and why.

• The person's wishes must be respected including their decisions about information sharing (unless there is a lawful basis for not doing so).

• If the person wishes it, his or her family or carers should be involved in those decisions.

• If the person lacks mental capacity decisions should be made in their best interests (in the case of children without capacity by those with parental responsibility for them);

• The information must be kept safe and secure, and confidentially must be maintained at all times.

The Liverpool Care Pathway and its phasing out

There has been much media interest in the use of the Liverpool Care Pathway (the LCP), which was a pathway adopted by more than 150 Hospitals across the UK and which has enabled tens of thousands of people to experience dignified care, including pain control and management of distress in the last hours and days of life.

The LCP was developed by the Marie Curie Palliative Care Unit, The Royal Liverpool and Broadgreen Hospitals and the University of Liverpool. It was recognised as a model of best practice in the NHS Beacon Programme 2001. It was then subsequently incorporated into the Cancer Services Collaborative Project and the National End of Life Care Programme (2004 – 2007). It was recommended in the NICE (National Institute for Clinical Excellence) guidance on supportive and palliative care for patients with cancer (2004) as a mechanism for identifying and addressing the needs of dying patients. It was recommended in “Our Health, Our Care, Our Say” White Paper in 2006 as a tool that should be rolled out across the Country. It is also recommended in the NHS End of Life Care Strategy which was published on 16 July 2008, shortly after the advent of the Mental Capacity Act 2005, which came into effect on 1 October 2007.

Whilst initially used for supporting cancer patients it supported patients irrespective of diagnosis. It was a plan of how someone should be cared for and supported towards the end of their life. The programme was recognised nationally and internationally as leading practice to support care in the last hours or days of life. The LCP was implemented in Hospitals, Hospices, Care Homes or an individual’s own home.

The local health professionals had to carry out a detailed assessment of the patient’s care needs and then work with the patient and family to develop a plan.

The plan covered the following aspects: -

(a) Keeping the patient comfortable by controlling their symptoms, particularly pain; (b) When to medicate a patient to prevent symptoms before they start; (c) When to discontinue some treatments or aspects of such care as feeding; (d) Psychological and spiritual support; (e) Support for the family.

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The LCP had to be used by staff who had appropriate training. They had to continually monitor the patient’s condition and have an ongoing dialogue with the family.

Deborah Murphy, an Associate Director of the Marie Curie Palliative Care Institute in Liverpool said the following: -

“A good death should be the norm not the exception in our society; any debate that drives up the quality of care in the last hours/days of life is welcomed. High quality care for the dying comes from well-trained Doctors and Nurses working with patients, relatives and carers to alleviate pain and discomfort. The LCP is one model to support care in the last hours and days of life when it is recognised that the patient is dying.”

It is acknowledged that getting the care right at this time is of paramount importance – as the Care Team only get one opportunity to get it right and make a potential positive lasting memory for relatives and carers.

However, in 2012/13, the LCP became the object of substantial criticism in the media and elsewhere. English Health Ministers had concerns about the poor end of life care cited in accusations against the LCP. Accordingly, Norman Lamb, who was the Minister of State for Care Services at the time, appointed a panel with a wide range of complementary interests and expertise in end of life care to review the use of the LCP in England. He asked Baroness Julia Neuberger to chair it. The Review operated independently by Government and the NHS, and was asked to report the findings to the Government and NHS England by the summer of 2013.

The Terms of Reference for the Review were as follows:

• To examine systematically the experience of patients and families of the use of the LCP;

• To examine the experience and opinions of health professionals about the use of the LCP;

• To examine hospital complaints about end of life care and in particular those about the LCP;

• To review the literature about the LCP in practice;

• To consider the role of financial incentives in this area;

• To make recommendations about what steps can be taken to:

o Improve care; o Ensure that patients are always treated with dignity and are involved in decisions about their care wherever possible; o Ensure that carers and families are always properly involved in the decision making process; o Restore public confidence.

As a result of the comprehensive review undertaken the following conclusions were made:

• There was recognition that, in the right hands, the LCP can provide a model of good practice for the last days or hours of life for many patients. In the wrong hands, the LCP has been used as an excuse for poor quality care. The LCP's position is a fragile one while poor practice continues and considerable deficiencies in its use is not addressed.

• The Review Panel concluded that the LCP was not being applied properly in all cases. The Panel strongly recommended the development of a series of guides and alerts that reflect the common principles of good palliative care, linking directly to the GMC's guidance, and that of the NMC, when it is developed. There should also be technical guidance specific to certain disease groups, for example such as solid cancers, blood diseases, organ failure, and cardio- respiratory diseases.

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• The Review strongly recommended that the use of the LCP should be replaced within a year by an end of life care plan for each patient, backed up by condition specific good practice guidance.

• It was acknowledged that the guidelines themselves would not on their own raise the quality of care for the dying. There needed to be a system wide approach to professional practice and institution provision, which was measurable and monitored, in order to bring the changes about.

• The Review also recommended a strategic approach with a coalition of regulatory and professional bodies, NHS England and patient groups, setting clear expectations for a high standard of care for dying patients. The GMC and NMC (Nursing and Midwifery Council) would take the lead with the Royal Colleges, HEE (Health Education England) and NHS England.

• The CQC would collaborate with patient groups in defining what good quality end of life care services should look like and then inspect against those standards.

• There was a recommendation that the NHS should work with clinical commissioning groups to address the considerable inconsistencies in the quality of care for the dying.

• The Report also called for more openness and candour among clinical staff, and a need for improved skills and competencies in caring for the dying, with a need to put the patient, their relatives and carers first, and treating them with dignity and respect.

• The Review Panel also recommended that the Government set improved quality of care for the dying as a priority for NHS England. It also recommended that the Vulnerable Older People's Plan that had been announced by the Government should include a strand on care for the dying. It also strongly supported the work of Organisations that promote public awareness of dying, death and bereavement.

Interestingly, the Review Panel felt so strongly about the conclusions and recommendations that it advised that it would continue to meet at its own expense and volition, to monitor closely how its recommendations would be followed through.

Following the putting together of the Department of Health Guidelines issued in 2014 [One Chance to get it Right], the Priorities of Care and the supporting documents now take its place.

It should be noted that the independent panel that reviewed the Liverpool Care Pathway included in its Report:

"Dying is not only a physical event – it is the conclusion of a life defined in its nature, content and connections within a society and its cultures that are every bit as important as the mechanism of how dying happens".

In order for health service research to develop and evaluate effective ways by which people who are dying and their families can be supported, there needs to be a greater understanding of how people who are dying, and their relatives and carers, experience care at the end of life; and greater understanding of the social and health effects of different experiences of dying on individuals and on their families.

The latest details of what the Government is doing in respect of End of Life Care is contained in its most recent report: "One Year On: The Government Response to the Review of Choice in End of Life Care" published on 21/09/2017.

The reports sets out the progress the National End of Life Care Programme Board has made in implementing the Government's choice commitment.

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The measures include:

- Supporting the roll out of digital palliative and end of life care records to all areas by 2020 - Inspecting and rating NHS hospital and community services for end of life care - Providing support to Trusts to help them improve end of life care services - Testing personal health budgets for people approaching the end of life to give them choice and control over their care - Developing metrics to assess quality and experience in end of life care - Working to change the nursing and medical undergraduate and postgraduate curricula to improve patient choice and quality of care

Human Rights Act 1998

The Human Rights Act 1998 came fully into force across the UK in 2000. The Act incorporates into domestic law the bulk of the rights set out in the European Convention on Human Rights (ECHR). The Act requires all “public authorities”, which includes the NHS, to act in accordance with the rights and duties set out in the Act. Doctors who provide services on behalf of the NHS, are required to observe the Act, in reaching decisions about individual patients and in relation to other aspects of NHS service delivery.

The Convention rights that are most relevant to decisions about treatment and care towards the end of a patient’s life are: - a) Article 2 – the right to life and positive duty on public authorities to respect life b) Article 3 – the right to be free from inhuman and degrading treatment c) Article 5 – the right to security of the person d) Article 8 – the right to respect for private and family life e) Article 9 – the right to freedom of thought, conscience and religion f) Article 14 – the right to be free from discrimination in the enjoyment of these other rights

The Convention rights are open to a degree of interpretation, and since 2000 the Act has been used in a number of cases to challenge particular medical decisions. The case law to date confirms that the established ethical principles and obligations that underpin good medical practice are consistent with the rights and duties established under the ECHR. It is also clear that Doctors should continue to expect greater scrutiny of their decisions, bearing in mind that the Act allows the Court to consider both the merits of a particular decision and the decision making process. So it is of increased importance that decisions are made in a way that is transparent, fair and justifiable, and greater attention is paid to recording the detail of decisions and the reasons for them.

Advance Decisions to Refuse Treatment

At common law, advance directives, known as “living wills” are given legal effect provided that they meet the elements necessary for validity as set out in Re T and HE v NHS Trust A and AE [2003] EWHC 1017 (Fam), [2003] 2FLR 408. The constituent elements of a valid advance refusal of treatment at common law are that the patient:- - is competent at the time the decision was made; - is free from undue influence; - is sufficiently informed; and - intends the refusal to apply to the circumstances that subsequently arise.

However, an advance directive requiring a certain specific form of treatment or treatments (as opposed to refusing treatments) which the doctor considers to be clinically unnecessary, futile or appropriate, is not binding on the doctor. This was confirmed by the Court of Appeal in R (on the application of Burke) v GMC [2005] EWCA 1003 civ at 55.

The common law, however, was felt to be unclear and poorly understood. The Law Commission’s Report no. 231 Mental Incapacity, February 1995, recommended the need for specific statutory provision for those cases where the patient has decided in advance to refuse some particular form of treatments.

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The Government accepted the need to place advance directives within a statutory framework so that their legal status and the safeguards governing them would be clearly stated. The provisions relating to advance decisions are now contained in ss24-6 of the Mental Capacity Act 2005.

During the Committee stage of the draft Mental Incapacity Bill before it became law as the MCA 2005 concerns were expressed about the possible connections between the draft bill and euthanasia and it suggested that an additional clause be added to the Bill to provide additional assurance. The government responded by inserting a new cl. 58 into the Bill, which made it clear that ‘nothing in this Act is to be taken to affect the law relating to murder or manslaughter of the operation of Section 2 of the Suicide Act 1961’.

Despite the addition of cl. 58, the debates in both Houses and in the press during the passage of the Bill were dominated by discussions of “euthanasia by omission” and “suicidally motivated advance directives” and “euthanasia by the back door”. In the event the clause survives without change as s62 of the act.

Summary of the law relating to Advance Decisions to refuse treatment in England and Wales

• An advance decision enables someone aged 18 and over, while still capable, to refuse specified medical treatment for a time in the future when they may lack the capacity to consent or to refuse that treatment

• An advance decision to refuse treatment must be valid and applicable to current circumstances. If it is, it has the same effect as a decision that is made by a person with capacity: healthcare professionals must follow the decision.

• Healthcare professionals will be protected from liability if they: - stop or withhold treatment because they reasonably believe that an advance decision exists, and that it is valid and applicable - treat a person because, having taken all practical and appropriate steps to find out if the person has made an advance decision to refuse treatment, they do not know or are not satisfied that a valid and applicable advance decision exists.

• People can only make an advance decision under the Act if they are 18 or over and have the capacity to make the decision. They must say what treatment they want to refuse, and they can cancel their decision – or part of it – at any time.

• If the advance decision refuses life – sustaining treatment, it must:

- be in writing (it can be written by someone else or recorded in healthcare notes) - be signed and witnessed and - state clearly that the decision applies even if life is at risk

• To establish whether an advance decision is valid and applicable, healthcare professionals must try to find out if the person: - has done anything that clearly goes against this advance decision - has withdrawn their decision - has subsequently conferred the power to make that decision on an attorney, or - would have changed their decision if they had known more about the current circumstances

• Sometimes healthcare professionals will conclude that an advance decision does not exist, is not valid and / or applicable – but that it is an expression of the person’s wishes. The healthcare professional must then consider what is set out in the advance decision as an expression of previous wishes when working out the person’s best interests.

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• Some healthcare professionals may disagree in principle with patients’ decisions to refuse life – sustaining treatment. They do not have to act against their beliefs. But they must not simply abandon patients or act in a way that affects their care.

• Advance decisions to refuse treatment for mental disorder may not apply if the person who made the advance decision is or is liable to be detained under the Mental Health Act 1983.

• It is advisable to discuss making an advance decision with the treating doctor and general practitioner, and to leave a copy with the patient’s medical records and it is also advisable for the person’s close family to know about the wishes so the document is not overlooked at the appropriate time.

• It is suggested that a card could be kept in a person’s wallet advising that they have made an advance decision.

In 2012, there were 3 important cases which helped to clarify some of the issues around the making of Advance Decisions, namely: -

1) A Local Authority v E [2012] EWHC 1639 (COP) 2) X Primary Care Trust v D [2012] EWHC 1390 (Fam) 3) An NHS Trust v D [2012] EWHC 885 (COP)

There was also a wider discussion of the issues concerning the withdrawal of life sustaining treatment in W v M [2012] 1 WLR 1653.

In A Local Authority v E [2012] EWHC 1639 (COP), the case concerned a highly intelligent 32 year old woman who was suffering from extreme anorexia nervosa and other chronic health conditions. E said that she did not want to be resuscitated or be given any medical intervention to prolong her life and she signed two documents to this effect. The first document was signed by her in July 2011 and was countersigned by her mother. The document stated: -

“I do not want to be resuscitated or given any medical intervention to prolong my life.”

Days later E was detained for treatment under s3 MHA 1983 and PEG fed. There was confusion amongst the medical, social work and legal professions as to her capacity, and together with her parents expressed doubts as to her true intentions at the time. Peter Jackson J decided that she lacked capacity to make a valid advance end of life decision.

E, then took some legal advice and she signed another Advance Decision witnessed by her mother and also by an independent Mental Health Advocate. This was in October 2011 by which time she had reluctantly complied with the PEG feeding. The second document said that if she was close to death, she did not want tube feeding or life support but would accept pain relief and palliative care. It also read: -

“If I exhibit behaviour seemingly contrary to this Advance Decision this should not be viewed as a change of decision.”

Following her signing the document, she was again detailed the same day, under s3 MHA 1983.

Peter Jackson J, weighed up all the evidence again but particularly needed to be satisfied as to E’s capacity at the time the second document was signed.

He came to the following conclusion: -

“On the balance of probabilities that E did not have capacity at the time she signed the Advance Decision in October 2011. Against such an alerting background, a full reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision would in my view be necessary. No such assessment occurred in E’s case and I think it at best doubtful that a thorough investigation at the time would have reached the conclusion that she had capacity.”

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But who had the burden of proof in this case? Was the Judge suggesting that the burden of proof is upon the maker (or those ‘supporting’ the maker) to establish capacity at the material time? Once E had been found to lack the relevant capacity, then the evidential burden would shift to those person(s) who were seeking to establish that the relevant capacity was actually present. Was the Judge in this matter proceeding on the basis that the Court had an inquisitional rather than adversarial jurisdiction and therefore question about the burden of proof did not arise? Requiring another person to advance a positive argument to the Court that P lacked capacity at the material time is an important safeguard, and this would be lost if the Court tried to determine the question without reference to burdens of proof.

In X Primary Care Trust v XB [2012] EWHC 1390 (Fam) the case concerned a man, XB, who suffered from Motor Neurone Disease, and he sought to make an Advance Decision that he wished life sustaining treatment to be withdrawn at the point when he was no longer able to communicate his needs or have control over his decisions as to his care and management. He was unable to write (and could only communicate by moving his eyes) at the material time, so it was necessary for the Advance Decision to be completed on his behalf.

The letter was not witnessed, and therefore this meant that the statement could not amount to an Advance Decision. This was in accordance with s25(5)(b) and s26(c) and s26(d) of the MCA 2005 – that states that the absences of a witness will render invalid an Advance Decision refusing life sustaining treatment.

However, even though the formality was not carried out correctly in the above case, does the Court have a route which could give effect to a sufficiently precise advance refusal of life sustaining treatment which did not comply with the strict formalities of s25?

Would there be a route through, taking into account the operation of s4(6) MCA 2005? This means that the Court should take into account “the person’s past………..wishes (and in particular, any relevant written statement made by him when he had capacity)”. Could this be a factor of “magnetic importance” when considering a case using the balance sheet approach?

Engaging the assistance of the Court

If there is any doubt or disagreement over whether an Advance Decision exists, is valid or is applicable to a treatment, then an Application can be made to the Court of Protection for it to make Declarations under the provisions of s26(4)(a) – (c) respectively.

Whilst a decision is being sought, those treating the person concerned are entitled to take nothing in the apparent Advance Decision as preventing them continuing with life sustaining treatment or doing any act they reasonably believe to be necessary to prevent a serious deterioration in that person’s condition (s26(5)). Matters need to be brought to the Court for a decision as quickly as possible (A Local Authority v E and X Primary Care Trust v XB – both emphasised that time was of the essence).

Advance Decisions and Lasting Powers of Attorney

Often advice is sought on whether someone should give a Lasting Power of Attorney (LPA) to a person or persons of his choosing, or make an Advance Decision with regards to refusing treatment.

There are a number of specific restrictions on Health and Welfare LPAs and, in particular, welfare powers are subject to Advance Decisions about treatment made by a Patient (s11(7)(b)). If a patient has made an Advance Decision about a particular medical treatment, that decision takes precedence. If, however, the donor made an LPA after the advance Decision, and gave the attorney the right to consent to or to refuse the treatment, the Attorney can choose not to follow the Advance Decision. It is possible to have both a health and welfare LPA and advance decision, but it requires careful drafting to avoid conflict.

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An Advance Decision can apply to the refusal of life – sustaining treatment provided it meets the requirements with regards to formalities set out in s25(5) and (6). An LPA does not grant power to the donee to give or refuse consent to the carrying out or continuation of life – sustaining treatment unless the LPA contains an express provision to that effect and is subject to any conditions or restrictions in the LPA (s11 (8)).

It is worth noting that once the donor of an LPA loses capacity his attorney is able to exercise his or her powers even if circumstances change. An Advance Decision is only binding if it is valid and applicable to the decision at the material time (s25).

LPAs cannot give Attorneys the power to demand specific forms of medical treatment that staff do not believe are necessary or appropriate (Code of Practice, para 7.28).

In the event of a disagreement between health professional about a donor’s best interests, the Code suggests that the healthcare staff should discuss the case with other medical experts and / or get a second opinion and then discuss the matter further with the attorney. If agreement cannot be reached, they can apply to the Court of Protection. While the Court is coming to a decision, healthcare staff can give life – sustaining treatment to prolong the donor’s life or stop the donor’s condition getting worse (code para 7.29).

When comparing a health and welfare LPA with an Advance Decision it should be noted that there is a prescribed form for an LPA but that there is no specific prescribed form for an Advance Decision. Therefore, if there was any undue influence or capacity issues to consider these would be difficult to pick up with an Advance Decision. With an LPA, the certificate provider has to give a certificate to confirm that the Donor has capacity and that no undue influence or fraud has been placed upon the Donor. An LPA can be used to extend or refuse to consent to life sustaining treatment but only if the LPA specifically provides for it. Compare this with the Advance Decision where it can be used to extend or refuse life sustaining treatment as long as the document is in writing. The Advance Decision has no particular registration requirements whereas the LPA for health and welfare has to be registered before it is used, and can only be used when the person lacks capacity. Where there is an Advance Decision there is no statutory duty for the doctor to consult as he must follow the decision as long as he is reasonably satisfied that it is valid and appropriate. On the other hand, the health and welfare LPA means that the doctor has to consult anyone named e.g. carers, and the attorney of a financial LPA or a deputy in determining the best interests of the person concerned. With an LPA for health and welfare, the doctor does not have to give or refuse treatment if he does not believe it is in the patient’s best interests. He can apply to the Court of Protection for a declaration as to what are the best interests. If on the other hand, there is an Advance Decision then it is valid and applicable and sets out specific treatment and the circumstances when treatment should not be provided or discontinued, then the doctor is not allowed to treat or continue to treat, even if he does not agree with the patient’s wishes. The doctor is able to apply to the Court for a declaration that the Advance Decision is valid and applicable.

In circumstances where there is neither an LPA for health and welfare nor an Advance Decision then a person is able to make a written statement of preferences. This is an expression of a person’s wishes and it will not be legally binding. If the person subsequently loses mental capacity and is not able to decide on his care and treatment, then those looking after his care must take the statement into account when acting or making decisions in the person’s best interests. This can be achieved by the preparation of an Advance Care Plan. Often these documents are used in hospitals and hospices, where the patient may not have either an LPA for health and welfare or an Advance Decision.

There are also Advance Care Plans for Children and Young People produced by the NHS which can be used as a tool for discussing and communicating the wishes of a child/parent(s) or young person. It is particularly useful in an emergency, when the individual cannot give informed consent for themselves and/or next of kin/parent(s) cannot be contacted. These documents would obviously be used when a child or young person was gravely ill and close to death. For the decision making process in these circumstances the following questions are asked:

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1. What do you/the child/young person know about this condition, any recent changes and anticipated prognosis?

2. What do siblings understand about the condition and anticipated prognosis?

3. What involvement is appropriate/possible for the child/young person in decision making?

4. To what extent has the child/young person been involved in decision making in this area?

5. What does the child/young person know about what decisions have been taken?

6. Have there been discussions about legal decisions and the Child Death Review process?

7. Has the Ambulance Service/GP/Out of Hours services/Coroner/Child Death Overview Panel/Rapid Response Team been informed that there is an Advance Care Plan written for the child/young person?

8. Have these wishes been discussed elsewhere? In order to enhance continuity of care then any documents arising from the discussions should be attached.

The important proviso at the end of the Advance Care Plan for a child/young person states as follows:

“Clinicians have a duty to act in a patient’s best interests at all times.

If a parent or legal guardian is present at the time of their child’s collapse, they may wish to deviate from the previously agreed Advance Care Plan and under these circumstances their wishes should be respected, provided they are thought to be in the best interests of the child/young person. The child/young person or parents/guardian can change their mind about any of the preferences on the care plan at any time”.

The Public Guardian v DA & 6 Ors: The Public Guardian v (1) BP (2) MP (3) JR (4) CW Subnom (1) In the matter of DA & Ors (2) In the matter of BP & Ors (2018) EWCOP 26 (Scott Baker LJ)

The Court was asked to consider two cases brought by the Public Guardian. The Applications were made under the MCA s23 and Sch 1 para 11 and were asking the Court to consider the validity of words contained in a number of LPAs.

The first series of cases concerned a number of LPAs which included provisions which contemplated euthanasia or assisted suicide by the Attorneys. In some of the cases the LPAs contained the provisions as instructions and, in others, the provisions were included as preferences. In the second series of cases the provisions were about the appointment of multiple Attorneys. This note concentrates on the first set of cases.

The Court held that the MCA should be construed in a way which gave as much flexibility as possible to donors to set out their wishes in an LPA. However, an instruction or preference which either directed or expressed a wish that an Attorney took steps that would bring about a donor's death was instructing or encouraging someone to commit an unlawful act and therefore was ineffective within the meaning of Sch 1 para 11(2)(a). An instruction was a direction in mandatory terms wherever it appeared on the LPA form.

If a stipulation was contained in the preferences box that was taken to be clearly mandatory it would be interpreted as an instruction. The case also held that instructions and preferences based on a future change in the law were also ineffective. If Parliament did take steps to allow an Attorney to assist in terminating a donor's life, then it was likely that such a change in the law would be subject to detailed statutory provisions and guidance, and the terms of the change in the law could not be predicted. The Court further held that it would only cause uncertainty and confusion to allow the inclusion of such clauses in LPAs prepared at the current time. Therefore, all such provisions would be deemed to be ineffective now under Sch 1 para 11(2)(a) of the MCA. This means that the various clauses contained in the LPAs were deemed ineffective and severed.

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It is interesting to note that the Public Guardian receives about 120 such cases every year, so this case was brought so that the Public Guardian could be in a position to provide guidance as to whether such provisions were lawful or likely to be severed by the Court.

The clauses which were contained in the LPAs brought to the Court's attention and which were all severed were as follows:

- DA (preference) – "Should a vegetative state arise (i.e. no prospect of a reasonable quality of life is possible) then life is to be terminated." - LB (preference) – "If my life is impaired in such a way that my quality of life would be severely restricted, I would wish my Attorneys to make the necessary arrangements which would lead to my demise." - PCI (instruction) – "At the time of writing these instructions, assisted dying is not permitted under UK law but my Attorney must be aware that it is my wish that, when the time comes, I can choose to end my life on my terms, whether or not this means travelling outside of the UK to a country where assisted dying is legal." - AG (preference) – "If the option is available at the time and my pain and suffering is unbearable and there is no prospect for an improvement, my preference is for active euthanasia to end my life with dignity in peace." Also as an instruction: "Please do NOT try and keep me alive if the end result means I'll be nothing more than a vegetable." - CG (preference) – the same preference as in her husband's (AG) LPA referred to above - GT (preference) – "In the event of my having a long term diagnosis for a painful or incapacitating or undignified, but not necessarily terminal condition, I wish my Attorney to do all possible to transit to Dignitas (in Switzerland) or similar." - MW (preference) – "My Attorneys should consider, if possible, aiding the end fo my life should I become incapacitated to the extent that I have no ability to affect or comprehend my situation or environment."

How does the Mental Health Act (MHA) affect Advance Decisions to refuse treatment?

1. The MHA does not affect a person’s Advance Decision to refuse treatment, unless part 4 of the MHA applies to the situation which means the person can be treated for mental disorder without their consent. In this situation health care staff can treat patients for their mental disorder, even if they have made an advance decision to refuse such treatment.

2. But even then health care staff must treat a valid and applicable Advance Decision as they would a decision made by a person with capacity at the time they are asked to consent to treatment. For example, they should consider whether they could use a different type of treatment which the patient has not refused in advance. If health care staff do not follow an Advance Decision, they should record in the patient’s notes why they have chosen not to follow it.

3. Even if a patient is being treated without their consent under Part 4 of the MHA, an Advance Decision to refuse other forms of treatment is still valid. Being subject to guardianship or after-care under supervision does not affect an advance decision in any way.

Does the MHA affect the duties of Attorneys and Deputies?

In general the MHA does not affect the Powers of Attorneys and Deputies. But there are two exceptions:-

- they will not be able to give consent on a patient’s behalf for treatment under Part 4 of the MHA, where the patient is liable to be detained under the MHA - they will not be able to take decisions – • about where a person subject to guardianship should live, or • that conflict with decisions that a guardian has a legal right to make.

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Being subject to the MHA does not stop patients creating new LPAs (if they have the capacity to do so). Nor does it stop the Court of Protection from appointing a Deputy for them.

It is good practice for clinicians and others involved in the assessment of treatment of patients under the MHA to try to find out if the person has an Attorney or Deputy. But this may not always be possible. So Attorneys and Deputies should contact either:-

- the health care professional responsible for the patient’s treatment (generally known as the patient’s RMO) - the managers of the hospital where the patient is detained - the person’s guardian (normally the local authority social services department), or - the person’s supervisor (if the patient is subject to after-care under supervision).

Hospitals that treat detained patients normally have a Mental Health Act Administrator’s Office, which may be a useful first point of contact.

NB. Part 4 of the Mental Health Act 1983 was amended by the Mental Health Act 2007 and deals with all the issues around medical treatment

Conclusion

We would all wish to meet our own death with dignity and feeling that we had some say in what happened to us in those final days and hours where it is possible to do so. It is also of profound importance to those who are left behind and is some comfort to them knowing their loved one was treated with respect and had so far as is possible, “a good death”. I will leave you with the words of the founder of the Modern Hospice Movement, Dame Cicely Saunders (and these words are on the front of the NHS End of Life Care Strategy): –

“How people die remains in the memory of those who live on”.

Patricia Wass, Consultant Solicitor Enable Law, PO Box 176, Plymouth PL1 9FB [email protected] 03303116990

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