What sort of life?

Supporters say it is a necessary recognition of personal autonomy backed by around 80% of the population, and a humane measure designed to prevent intolerable suffering. Opponents argue that it will fundamentally change for the worse the nature of our society, and particularly the way we regard the sick and infirm. The issue of assisted dying is one of the most vigorously debated contemporary issues – yet the very emotions aroused may prevent us getting a proper perspective.

The debate was given fresh impetus by the final decision of the House of Lords as an appellate court, the Debbie Purdy case ([2009] UKHL 45, 30 July 2009). The decision itself is of limited significance in Scotland: the House held that Ms Purdy, who suffers from progressive multiple sclerosis, was entitled to written guidance from the Director of Public Prosecutions as to the circumstances in which he might seek to charge someone with assisted suicide. This was to enable her to decide whether to ask her husband to help her end her life at a time when she was no longer able to do so by herself, or do so on her own while still physically capable.

The wider interest lies in the Lords’ ruling on the scope of article 8 of the European Convention on Human Rights: “Everyone has the right to respect for his private and family life”. Departing from their earlier ruling in Pretty [2002] 1 AC 800, the Lords accepted, in the light of the subsequent ECtHR judgment in the same case, that article 8 is capable of applying in the final moments of life.

Jeremy Purvis MSP, a supporter of legalised assisted dying, was quick to write to the Lord Advocate following the decision to ask if she would offer the same guidance in Scotland as is now required of the DPP. The somewhat non-committal Crown Office statement in response to a Journal enquiry on whether guidance will be forthcoming, is in the panel.

Legislative moves

The European Court has not to date accepted an argument that it is necessary to recognise a right to die, and the question remains open whether the matter should be left to prosecution policy, or whether more far-reaching reform should be promoted. And their Lordships in Purdy were at pains to stress that they were not changing the law on suicide, a matter which was entirely the responsibility of the legislature.

There are those, on both sides of the border, who wish to act in furtherance of that responsibility.

Most recently in England & Wales, the former Lord Chancellor Lord Falconer of Thoroton was defeated by 194-141 in his attempt on 7 July to add a clause to the Coroners and Justice Bill that would have permitted acts done solely or principally to assist someone to travel to a country where assisted dying is lawful, where that person had previously made a declaration of intent and two independent medical practitioners certified that the person was terminally ill and had capacity to make the declaration.

Meanwhile at Holyrood, independent MSP Margo MacDonald is set to introduce her proposed End of Life Choices (Scotland) Bill, having secured the agreement of more than the required minimum of 18 MSPs during her public consultation. Under her scheme an individual with certain conditions would make an advance request to a physician registered for the purpose. After not less than 15 days, a second valid, documented request would enable assistance in dying to be given. The attending physician’s responsibilities would include advising of all feasible alternatives and of the right to rescind the request, keeping full documentation, and reporting the case to a review committee.

Difficult line to draw

Those who would legalise assisted dying are far from unanimous as to how far this should be permitted. Lord Falconer’s clause was expressly limited to cases of terminal illness. The MacDonald proposals go much further, covering patients with a terminal illness, or a progressive, degenerative condition, or who unexpectedly become incapacitated to a degree they find intolerable (the situation of the young rugby player Dan James). A further proposed category of any others who “find their life to be intolerable” is to be dropped.

Glasgow solicitor John Kerrigan is a supporter of assisted dying for the terminally ill, but admits that the James case gave him “great concern”:

“I couldn’t see Dan James as coming within the scope of what I would regard as being an appropriate law in relation to assisted suicide.”

Nicola Smith, a solicitor with the disability support charity Enable, admits that the charity has not yet reached a concluded position on whether to oppose assisted dying in all cases, given the wide range of views in play. However she is concerned at the impact on the disabled if the law followed the James case. “We would want to try and focus on what could be done to enhance his life. Eighteen months after an accident like that [James was rendered quadriplegic] is not a long time to adjust, and we would want to look at what can be provided for someone like him, what particular things are difficult for them, what can be done to support them and give them more control over their life.”

John Deighan is Parliamentary Officer for the Catholic Church in Scotland, and currently a Masters student in human rights law. He argues that euthanasia supporters are in a “sticky position” on this issue, because any line they try to draw is liable to be challenged as discriminatory. “If they have to base the granting of the facility to people who have a particular qualifying characteristic, that is hard to sustain because once you give it to one group, even on the basis of non-discrimination, you can’t then justify why some groups should be allowed it but not others.”

In the Netherlands and Belgium, he adds, since assisted suicide was made legal the pool of candidates has grown from the terminally ill, to the chronically ill, to those who are physically suffering, to those who are mentally suffering.

My right to choose?

Supporters of reform see the issue as one of personal autonomy. “Why”, Margo MacDonald asks, “should it be legal for a person to exercise autonomy, and refuse treatment from a physician to preserve his or her life, yet illegal for a physician to respond to a request for medication that would have the same result in ending a life that the person concerned judges to be intolerable?”

Deighan maintains: “You have to have a balance between an individual’s wishes and the wellbeing of society. Society has a strong interest in preserving life. The state has an interest to show that we value life – we take action to prevent suicides, which we see as contrary to the basic good of life, and because people who attempt suicide are usually in some form of depression.”

Article 2 of the European Convention has been relied on by both sides of the argument, but Deighan argues that article 2 carries a strong and positive affirmation of life that underpins the whole Convention: “It was said in Pretty that the court’s case law accords pre-eminence to article 2 as one of the most fundamental provisions of the Convention, without which enjoyment of any other rights and freedoms in the Convention is rendered nugatory.”

Kerrigan, while maintaining that the terminally ill should be able to make their own choices, recognises the difficulty of extending any law to those with degenerative conditions but not terminally ill, or those with learning difficulties or restricted lifespans: “We do not want to get into a situation where we could be seen as a society to be taking people out because they don’t fit, they’re not beautiful people, let’s put it that way.”

For Nicola Smith, any such move carries real dangers: “There are issues about what society thinks of disability and the fact that if you need help with personal hygiene or help to get out of bed, that somehow makes your life less worth living, and people think they would rather die than be in that situation. And we’re wary of creating that kind of attitude in society.”

She adds: “We’ve certainly seen confusion around disability and terminal illness. At one fatal accident inquiry we dealt with, the sheriff actually mistook someone who had a lower than average life expectancy as being terminally ill. So when we talk about being terminally ill, we have to be really clear about what we mean, that it’s not about having a lower than normal life expectancy.”

Free intent

Capacity to choose is itself a key question. Margo MacDonald proposes to adopt the statutory definition of an incapable adult, with evaluation by a second health professional in cases of doubt – but her consultation left open whether persons under 16 might be considered capable of giving consent.

Nicola Smith points out that the subject poses issues for the disabled, especially those with learning difficulties, “who may have capacity to understand certain parts of the issue but who are vulnerable to pressure, and those are the people that it’s difficult to define legally”. The dilemma, she adds, is in not discriminating against people who might be able to make their own decisions, while at the same time not leaving the vulnerable open to pressure.

Kerrigan accepts that a line has to be drawn somewhere between those who are deemed to have capacity and those who do not, but suggests that concern for the vulnerable can be overdone: “The charities who are concerned about assisted suicide all come from that angle, but of all the research that’s been carried out, I haven’t seen any that indicates that you are more vulnerable where there is a regulated system than where there is not – in fact the statistical evidence appears to be that you’re more vulnerable if you’re in our situation, where there’s no regulated system, than where there is one.”

Deighan however maintains that formal safeguards would not avert the subtle pressures that would come into play, even in hospices, “if others around you opt to ‘do the decent thing’, if you see them as choosing not to be a drain on resources, or a burden on their families, but you are”.

Judging quality of life

How far would it change our view of the medical profession? Deighan argues that “patients must be secure in the belief that doctors will do what they can for them, and we don’t want them to feel that doctors may forgo trying because it’s cheaper than continuing care”. Smith suggests that we should not leave it to doctors to advise patients of the alternatives to assisted dying, as they tend to present matters in strictly clinical terms. “A doctor is expert on the medical condition and its likely progress, but not on the support networks that might be available, so it’s about having the right people to provide the right information to someone so they can make a proper choice.”

Supporters of reform argue that the quality of life of terminally ill patients has to be brought into the equation. Deighan accepts that quality of life matters, and it may be legitimate to withhold treatment such as chemotherapy if it will not provide a proportionate benefit, but argues that medical care can meet this need. “We’re fortunate to live now in an age where medical people say they can control pains (they use the plural because they recognise different types of pain) in just about every case. ‘Terminal sedation’ can respect the quality of life without taking the step of ending life.”

Kerrigan does not see the improvements that are proposed in palliative care as conflicting with reform: “I see them as both going hand in hand. It should be there, it should be available and it should be the best it could be. For those who don’t want the palliative care, then provided they have the capacity and they meet whatever test is applied, they should have that right. Why make them undergo treatment, huge doses of morphine, which may not palliate the pain?”

The MacDonald consultation equally saw her proposals as “consistent and compatible with palliative care as an important part of comprehensive end of life care; [not] as mutually exclusive but rather, as complementary choices”.

It was however claimed in the recent Lords debate that in the Netherlands palliative care has declined since assisted suicide was permitted, and Smith recognises the risk of subtle pressure here also: “It’s obviously a more expensive option to provide palliative care, and there’s a risk that people will simply get biased information: the focus will be, you’re going to be in pain, you’re going to suffer, you’ll not be able to get dressed, you’ll need someone to come in to wash you and it will all be quite humiliating and embarrassing, whereas there are lots of people who need that help but don’t have that experience.”

Kerrigan counters: “I don’t think it should be beyond our wit to have people who do have the skills to give that counselling, in a balanced way.”

The issue of assisted dying is likely to be one on which, whatever your position, it is likely to be tested by a hard case; and ideals you set, whether in terms of quality of care, quality of information or quality of choice, may prove extremely difficult to achieve in practice. Somehow, despite all this, the law will have to work out a solution.

“Legalising premature death as a treatment option plants a seed of doubt about one’s right to demand help to live with dignity and undermines the state’s responsibility to ensure that all citizens can live with dignity.” (Baroness Wilkins, House of Lords debate, 7 July 2009)

“My argument is also based on respect for human life. When someone close to the end of their life, in pain and distress, wants to die, it is no respect for their life to force them to stay alive.”
(Lord Goodhart, House of Lords debate, 7 July 2009)

Purdy:the COPFS statement

“The decision of the House of Lords applies only to England & Wales and to the statutory offence of assisting the suicide of another under s 2 of the Suicide Act 1961. This offence does not apply in Scotland where, unlike England and Wales before 1961, suicide itself has never been an offence. The guidance to be issued by the Director of Public Prosecutions for England & Wales will only apply to cases where the offence of assisting suicide takes place within England & Wales. We are carefully considering the terms of the Purdy decision with colleagues in the Crown Prosecution Service.”