Assisted dying – should the UK change its stance?

Introduction

Assisted dying has once again been brought to the forefront of the public’s attention by Lord Falconer’s Assisted Dying for the Terminally Ill Bill, a bill allowing for a physician to provide assistance to a patient with a life expectancy of less than six months in order to end their life, which had its first reading in the House of Lords on the 5 June 2014. This was soon followed by a second reading on the 18 July 2014. Assisted dying has been a contentious issue, with concerns from religious groups as well as non-religious arguments relating to safeguarding vulnerable adults.

Several high-profile religious figures, including the Most Reverend Desmond Tutu ¹ and the former Archbishop of Canterbury Lord Carey, ² have recently modified their views and spoken in support of assisted dying. Lord Carey stated that ‘in strictly observing the sanctity of life, the Church could now actually be promoting anguish and pain, the very opposite of a Christian message of hope’. Public support for assisted dying appears to be high. In the 2010 British Social Attitudes survey, 82% of the people asked believed that a doctor should probably or definitely be allowed to end the life of a patient with a painful incurable disease at the patient’s request. ³ Following an intense 10-hour second reading in which 65 peers spoke in favour and 62 against, ⁴ the bill will now proceed to its committee stage, where it will undergo further scrutiny. Is it therefore time to revise the stance on assisted dying?

Assisted dying versus euthanasia

Assisted dying occurs when one individual provides assistance to another in order to end the latter person’s own life. This is different and distinct from euthanasia (from the Greek Eυθάνατος [Euthanatos] meaning ‘good or noble death’), which refers to one individual intentionally ending another person’s life for the purpose of relieving pain and suffering. In practice, assisted dying means a physician provides a lethal dose of a certain medication to a patient and that patient will need to self-administer it, whereas in euthanasia the physician must directly administer the lethal dose.

Both assisted dying and euthanasia have become more prominent over the last few years, with several high-profile cases highlighting the ongoing importance of the debate. Particularly recent and memorable is the case of Tony Nicklinson who suffered with locked-in syndrome, a neurological condition where patients are aware and conscious but with complete body paralysis apart from muscles controlling eye movement. He campaigned for the right to have a doctor help him end his life, being unable to do so himself due to his debilitating condition. The High Court refused Nicklinson’s request. Soon after, he developed pneumonia and began refusing food, fluids and antibiotics leading to his death just a week after the ruling. ⁵ Although Nicklinson’s request and subsequent appeal were refused, a second appeal asking for more clarity in the Director of Public Prosecution’s (DPP) 2010 Policy had a different outcome. The Supreme Court ruled in 2010 that the DPP’s Policy was unclear with regard to the legal consequences for health-care professionals if assisting suicide. ⁶ This was arguably the crucial initial step leading to change and culminating in Lord Falconer’s proposed bill. It is important, however, at this stage to take an historic view of events that paved the way to this bill.

Change in regulations worldwide since 2000

Lord Falconer’s Bill is not an isolated incident, with several others capturing the public’s attention, ⁷ nor is it the first time in the UK that a bill has been put forth to parliament in an attempt to change the Law. Lord Joffe’s Assisted Dying for the Terminally Ill Bill in 2005 followed similar bills in previous years, but in 2006 it was defeated in parliament by 148 votes to 100 and given a ‘wrecking amendment’ before being able to proceed to the committee stage. ⁸

Why is it that Lord Joffe’s Bill had no success? Perhaps a general and genuine lack of positive experience from overseas could be the answer. It was not until 1997 that physician-assisted dying had been legalised in Oregon, and 2002 that the Netherlands and Belgium legalised euthanasia. With so little data available on the success (or lack thereof) of these laws at that time, the UK may have deemed it pre-emptive to introduce such a law. Alternatively, it could be a response to the content of previous bills, as, for example, Lord Joffe’s Bill was criticised for its misleading language and the concerns that it was an initial step into legalising voluntary euthanasia as opposed to assisted dying. ⁹ This subtle but vital distinction is likely to have been decision changing for many people in the UK.

The new bill claims to rise above the inadequacies of previous bills. However, opponents are vocal that such legislation may be used as a quick and quiet ‘out’ for elderly and disabled people who feel a burden on society. They are concerned about potential coercion into assisted suicide as a perceived moral obligation. These are very valid concerns and certainly ones that must be addressed in any bill aiming to protect the elderly and vulnerable individuals. Could regulations for such a law ever be strict enough? Could they possibly cater for what is lacking in the current system while still protecting those deemed vulnerable in society? The answer to these questions can only be addressed once it is understood how and when the historical milestones in assisted dying and euthanasia regulations have materialised, as explained in Table 1.

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Table 1.

Milestones in assisted dying and euthanasia regulations across the world.

1997	Oregon passes its Death With Dignity Act	Permits adult Oregonians to end their lives provided: • a signed declaration is provided in the presence of an unrelated witness; • they do not lack capacity, have been diagnosed with a terminal illness and informed of its likely prognosis,  confirmed by an attending physician; • feasible alternatives have been explained; • the lethal medication is self-administered voluntarily; • a physician expressly prescribes the medication for that purpose. 10
2002	The Netherlands and Belgium legalise voluntary euthanasia	Dutch Act states that euthanasia and assisted suicide are not punishable if the attending physician acts with criteria of due care, concerning: • the patient’s request; • information provided to the patient; • the presence of reasonable alternatives; • consultation with another physician; • an applied method of ending life. 11 The Ministry of Justice in Belgium legalises euthanasia providing that: • the patient is an adult or emancipated minor who is conscious at the time of request; • the request is voluntary, repeated and considered; • the patient has no potential of improvement or cure and is suffering unbearably. 12
2003	Lord Joffe’s Assisted Dying for the Terminally Ill Bill receives its second reading	The bill permits attending physician to assist adult patients to die if: • a signed, written request from the patient is provided, witnessed by two individuals; • following examination, a physician determines they do not lack capacity; • the patient is diagnosed with a terminal illness; • the patient is suffering unbearably; • the patient has been informed of all reasonable alternatives. The patient is referred to a consulting physician who must be also satisfied with the above. 8
2006	Lord Joffe’s Bill is defeated
2008	Multiple Sclerosis sufferer and political activist Debbie Purdy campaigns against DPP Ken Macdonald for clarity on the Suicide Act 1961
2010	Supreme Court rules law on assisted suicide is unclear and DPP issues new guidelines
2014	Lord Falconer’s Assisted Dying For The Terminally Ill Bill undergoes its first and second reading	The bill permits an attending physician to assist adults (aged 18 years or over) to end their own lives given the following conditions: • a signed, written request from the patient is provided in the presence of an unrelated witness (who also signs the declaration), countersigned by both the attending and an independent physician after they are both satisfied following examination that: ○ the patient is diagnosed with a terminal illness with six months or less to live; ○ the patient has the capacity to make the decision to end their own life; ○ the patient has a clear and settled intention to end their own life which has been reached voluntarily, on an informed basis and without coercion or duress; ○ the patient has been informed of all reasonable alternatives.

Falconer’s bill is modelled on Oregon’s Death with Dignity Act but with more safeguards, and it aims to legalise assisted dying for terminally ill people with ‘an invariably progressive condition which cannot be reversed by treatment’ and who have six months or less to live. Two doctors, who are certain that the decision is entirely voluntary, informed and free from coercion, must confirm this. In addition, they must make the individual aware of all alternative care options, including, but not limited to, palliative and hospice care. The individual must make and sign a declaration in the presence of a witness who must not be directly involved in the person’s care or treatment or be a relative. This witness must also sign the declaration in the person’s presence. Finally, the two independent doctors must countersign the declaration. ¹³

A ‘cooling off’ period of two weeks is given between signing the declaration and provision of the lethal medication. However, the declaration may be revoked at any time and by any means, independent of the patient’s competency. The assisting health professional can provide a prescription for a lethal medication or even prepare a medical device to enable the individual to self-administer or otherwise aid with ingestion/self-administration of the medication. However, no individual other than the patient may carry out the final act of taking the prescribed lethal dose.

Divided opinions

The very concepts of assisted dying and euthanasia have faced strong opposition ever since their inception. Many of these concerns stem from the fear that the new bill could be used as an ‘out’ by members of the elderly and vulnerable population. However, it is important to stress that Falconer’s Bill does not call for the legalisation of euthanasia, where a doctor administers lethal medication to the patient, but rather assisted dying. Here, patients are prescribed medication that they must take themselves; no doctors or family members are allowed to give it to them. To safeguard patients further, a terminal diagnosis with less than six months of survival is necessary, prohibiting the elderly and the vulnerable to claim this as a means of dying. However, these safeguards are not watertight. Critics cite a statement by the UK Royal College of Pathologists from 2005 pertaining to the diagnosis of a terminal illness that requires the attending physician to make ‘a determination that the patient has a terminal illness’. Post-mortem research and clinical audit studies performed in the UK, Europe, the USA and many other countries consistently show an estimated 30% error rate in the medically certified cause of death. Significant errors (i.e. misdiagnosis of the terminal illness resulting in inappropriate treatment) occurs in an estimated 5% of cases. Therefore, this determination is not as reliable as the bill implies. ¹⁴

‘Not more deaths, but rather less suffering’

Lord Falconer accepts there can be no absolute certainty relating to the prognosis of how long someone has left to live and simply argues that whether the issue is assisted dying or the decision to no longer offer treatment, the physicians must give their best judgement. Whether the period should be six months is still debated and will no doubt be addressed at the committee stage in the House of Lords.

Figure 1 shows the passage a bill must take through parliament before becoming law. Lord Falconer’s Bill started in the House of Lords and is currently awaiting its committee stage. OPEN IN VIEWER

The slippery slope argument is commonly raised against proponents of any such bill, and fears persist despite the bill’s restrictions to terminally ill persons. This argument states that once assisted dying is legalised, it would be all too easy to progress to euthanasia (especially of disabled individuals) and even systematic killings; all-too reminiscent of the Nazi’s eugenics programme. These fears, though understandable, hold little weight. A recent review of adherence to request criteria in jurisdictions where assisted dying is lawful showed no evidence of exploitation in the 17 years assisted dying has been legal in Oregon. ¹⁶ If the UK’s reason to hold back on legalising assisted dying in 2006 was lack of experience, one must now acknowledge this no longer holds true in light of this report. No calls have been made to extend the legislation to include non-voluntary or even voluntary euthanasia since 1997. Equally the proportion of deaths from assisted death in Oregon as a percentage of total annual deaths has remained at or below 0.2%, ¹⁷ and experience shows that only 0.5% of those who consider assisted death follow through with it. ¹⁸ Although these reviews reflect rather positively on the situation in Oregon, other reports have highlighted issues of concern. One such study suggests as many as 26% of patients requesting physician-assisted dying suffer from depression, and that the current practise of the Death with Dignity Act ‘may fail to protect some patients whose choices are influenced by depression’. ¹⁹ This is something that should be seriously and serially considered in all patients in the UK if the bill becomes law.

Despite the potential limitation and concerns that exist from various parties, the current bill has gathered support from the highest ranks of the medical profession. Sir Terence English, patron of Dignity in Dying and former president of the Royal College of Surgeons, along with 26 other senior medical figures, 11 of whom are present or former presidents of Royal Medical Colleges, wrote to every peer before the bill’s second reading, urging them to give their support. ²⁰ Of course there are still many objections to the bill, whose guidelines have been described by former president of the High Court’s family division Baroness Elizabeth Butler-Sloss as ‘utterly inadequate’. ²¹ The Royal College of General Practitioners continues to oppose a change in the law on assisted dying, claiming such a change would be detrimental to the doctor–patient relationship and put the most vulnerable groups in society at risk. ²² The BMA also currently opposes all forms of assisted dying and supports the current legal framework, though also acknowledges the broad spectrum of opinion within its membership. ²⁴ Equally, the Royal College of Surgeons issued a response to the Commission on Assisted Dying in 2011, stating that it ‘does not recognise any circumstances under which it should be possible for people to be assisted to die’. ²⁴ Though the Royal College of Physicians of London previously echoed this sentiment, it recently deemed that it was ‘now an appropriate time to reconsider whether to resurvey Fellows and Members on this important issue, and will decide this autumn’, indicating that at least one College is considering the opinion of its Fellows and Members and willing to perhaps change its previous attitude with regard to the bill. ²⁵

Clearly, any bill concerning issues of life and death will cause considerable controversy. This is true not just for the current bill but also passed bills concerning end of life, for example when dealing with abortion. The Abortion Act was introduced in 1967 so that women were not forced to resort to oftentimes lethal backstreet abortionists, among other reasons. The Abortion Bill, which has been altered and refined many times since its inception, is now almost universally accepted as an essential piece of legislation. Drawing many parallels with the issue of abortion, the current options for terminally ill individuals suffering unbearably with limited time to end their own lives are severely restricted at best. Should they have the physical and financial capability, they could fly to Switzerland and use Dignitas, an organisation offering its members an ‘accompanied suicide’. ²⁶ They could involve a relative and risk them being jailed for up to 14 years or, failing that, risk a botched suicide attempt at home. In light of the 17 years’ experience provided by Oregon, perhaps it is time a new law was adopted to give such individuals the choice when they need it most. Falconer’s bill represents an important step in introducing assisted suicide in the UK through a controlled mechanism that will ensure that it is only being used appropriately and safeguarding vulnerable individuals. There will of course be disagreement and controversy. However, discussion and debate can only help to clarify and improve the bill before its passage into law.

Clinical vignettes

The main aim of this article was to explain and analyse Falconer’s Bill and attempt to outline its place in the UK in the context of both national and international attitudes towards assisted dying. Through the case vignettes shown in Table 2, the aim is to demonstrate how patients might be treated currently and how this would change if the Bill passes into law.

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Table 2.

Case vignettes.

	Currently, UK 2014	Following law on assisted dying based on Falconer’s Bill
Case 1
Mary is 98 years old and lives in a care home. She is diabetic and slowly going blind from diabetic retinopathy. She has recently been prescribed medication to help her sleep and combat depression. She often gets very confused and distressed. After hearing her crying in her room one afternoon, one of her carers asks what the matter is. Mary tells the carer that there is no point anymore, and asks for a whole bottle of her sleeping pills so that she can end it all and just sleep forever.	Neither Mary’s carer nor her doctor could lawfully grant her request. Doing so is an offence under section 2 of the 1961 Suicide Act and carries a maximum penalty of 14 years’ imprisonment. Should an individual carry out an act causing the death of the victim, it would then be charged as murder or manslaughter.	Given that the criteria in the proposed bill include possessing capacity as well as being diagnosed with a terminal illness and expected to die within six months, Mary could not use this law to help end her life. She is not terminally ill, and as such, the law would not apply. Independently of this, she suffers from depression, a treatable conditions, which at the moment potentially clouds her capacity. As such and until her depression is managed, she would not be deemed to possess capacity to initiate assisted dying.
Case 2
Mark is 57 and has smoked 20 cigarettes a day since he was 17 years old. He was diagnosed with lung cancer aged 54, which has since metastasised and spread to his spinal bones and lymph nodes. He is in unbearable pain every day, which often keeps him and his wife up at night. Following a particularly bad night, he is transferred to hospital and informed thereafter by a team of oncologists that he has less than three months to live. After extensive discussion with his family, he asks his doctor for help to die. Ten days after his initial decision, he learns that his daughter is pregnant, and he wishes changes his mind.	Mark’s request cannot be granted. Any individual, doctor or otherwise, assisting Mark to die risks severe legal action.	Following confirmation by his specialist doctor and an independent consultant physician that Mark meets the correct criteria, he could be prescribed life-ending medication. However, in addition to the obligatory ‘cooling off’ period of 14 days, the patient also has the right to rescind their request at any time, regardless of their mental state or capacity. Therefore, Mark (although eligible for prescription of lethal medication through this law) is entirely able to change his decision at any stage before taking the medication to end his life, and by law he will need to take at least 14 days to consider this.
Case 3
Robert is 78 years old and has metastatic oesophageal cancer, which is terminal. He has been treated extensively with chemotherapy and radiotherapy, but now relies entirely on palliative care to combat what he can only describe as unbearable pain. He is now unable to eat properly and relies on feeding through a nasogastric tube. His doctor recently informed him that he likely has less than four months to live. He finds that he has no quality of life left as he is in constant pain, and it was made clear to him that it would not be possible to control the pain without strong opiate analgesic. Even then, side effects limit the amount of tablets he can take, and he is in continuous pain. Following much deliberation and discussion with his family, he asks his doctor to prescribe him life-ending medication.	Robert’s attending physician could not honour this request, as this would be against the law. Even if the doctor sees his patient suffering, doing so would risk a charge of murder, manslaughter or an offence under the Suicide Act 1961.	Provided that Robert has capacity, his own doctor and an independent consulting doctor agree about the nature of his terminal condition and that this is likely to claim Robert’s life within 6 months, Robert can sign a declaration in the presence of the two doctors and an independent witness. Following this, he would be eligible for assisted dying. After a ‘cooling off’ period of two weeks, he could be prescribed lethal medication, which he will need to take himself to end his life. If at any given time during these 14 days or up until the point where he takes the medication he changes his mind, he is entitled to withdraw his consent for assisted dying.

Conclusion

Assisted dying represents an incredibly complex area involving not only patients but also their families, carers, nurses, doctors and the public. Patients must above all be protected from unsolicited use, and any law should allow assisted dying only for appropriate patients whilst safeguarding vulnerable individuals and the elderly. European countries ²⁷ and an increasing number of US states ²⁸ are introducing or planning to introduce laws similar to Falconer’s Bill. Such a bill will be heavily discussed and refined before reaching the final stages in parliament. However, with endorsement lacking from many large medical bodies such as the BMA and Royal Colleges, it seems unlikely that Falconer’s Bill will have a different fate to its predecessors. Despite this, the concept of assisted death now has more support than ever, and proponents can afford to look to the future with an optimistic eye.