By Angela Craig
In January, Portugal – amidst the coronavirus pandemic – became the latest country to take a decisive move towards legalising assisted dying. In Britain, there is consistent lobbying to take the same course. The issue is often met with indifference or support on the left, broadly speaking: Portugal’s move was led by the social democratic Socialist Party. This response echoes liberal bourgeois opinion, as expressed in the mainstream media, lobby groups and by prominent individuals, that this is a matter of ‘individual choice’ or ‘individual autonomy’. This article argues that the question of whether to legalise assisted dying (whether in the form of assisted suicide or voluntary euthanasia) brings to the fore the limitations of assessing such issues through such a framework of autonomy or choice, expressed by rights in law, within a capitalist society. It demonstrates that it is necessary to start off from the real material social relations which exist, not abstract idealist concepts such as ‘choice’.
In this respect, while assisted dying is an important question in itself – which raises fundamental matters such as the value accorded to human life, something painfully highlighted by Britain’s response to covid – how one approaches it has implications for a whole range issues. For socialists, the legalisation of assisted suicide cannot be reduced to the idealistic concept of abstract individual choice. Rather, we have to ask, what structures the choices available, and to whom? What are the material conditions in which the question of legalising assisted dying is posed? What would be the significance of a change in the law on this matter in a specific context and for specific individuals?
This is in essence the way in which many politically organised disabled people approach the issue when, in opposing legalisation, they point out that the issue of assisted dying is located in a social context. This context includes: the lesser value accorded to different types of lives, as revealed clearly in interaction with institutional structures (a factor, on the plane of racism, brought into sharp focus recently by the Black Lives Matter protests); entrenched structural discrimination and socio-economic inequality; the significance of these in shaping the lived experience of disabled people, and what individuals themselves come to believe constitute their ‘choices’.
The legalisation of assisted suicide is viewed as a particular threat by many disabled people given the prevailing highly negative ways in which disabled people’s lives are portrayed and misunderstood. This is reflected in the presumption that some disabled people must find life virtually intolerable, as seen in popular culture with plays like ‘Who’s Life is it Anyway’ from the 1970s to the film ‘Me Before You’ more recently. These depict assisted suicide as a logical choice for disabled individuals (who are not terminally ill and otherwise have much to live for). Death is presented as a kind of liberation. Likewise when a non-terminally ill gold-medal winning Paralympic athlete says she is considering euthanasia it is reported unquestioningly.
Advocates of legalising assisted suicide argue that fears of a negative impact on disabled people are exaggerated. They insist there would be safeguards: ‘the role of any future assisted dying legislation must be to provide all people with access to high quality end of life care and protect potentially vulnerable people from any form of social pressure to end their lives’.
Let’s think about that in the immediate context – leaving aside the longer brutal history of disabled people under capitalism.
During the pandemic disabled people have been disproportionately affected from the start. Prejudice has been blatant: from a failure to provide sign language interpretation for daily media briefings through to the non-prioritisation of disabled people for vaccination. At the start of the pandemic, the Coronavirus Act removed from local authorities the duty to provide social care. Older people and disabled people of all ages found care services – essential services which might help ensure a person eats, is able to bathe or toilet, is assisted with medication or simply just sees someone that day – reduced or removed. Protective equipment was poorly available to care workers either in care homes or working in the community. Daily government briefings signalled that deaths of disabled people were to be viewed differently by repeatedly highlighting the proportion of deaths where people had ‘underlying health conditions’. Amidst concerns about discrimination in medical treatment and pressure to sign ‘Do Not Resuscitate’ (DNRs) orders, a large group of disabled people and organisations found it necessary to sign an open letter to NHS England insisting that ‘Our individual chance of benefiting from treatment should we have Covid19 must not be influenced by how our lives are valued by society’. Deaf patients are commonly refused BSL interpretation, even when facing the most serious medical diagnoses.
Covid ran rampant through care homes. Shockingly, and with almost no meaningful coverage in the mass media, data shows that disabled people accounted for six in ten coronavirus deaths. Deaths of young people (aged 18 to 30) with learning disabilities was an incredible 30 times higher than in the general population. When Boris Johnson announced on 22nd February that lifting lockdown ‘will result in more cases, more hospitalisations and, sadly, more deaths’ he was not only highlighting how disastrous the response to covid has been compared to countries that have pursued an elimination strategy. He was also saying that these deaths, which will – if they follow the trend to now – disproportionately be deaths of disabled people, are acceptable.
Disabled people in Britain entered the coronavirus pandemic following a decade of public spending cuts which brought attacks on independent living, disability benefits and in-work support. A rise in hate crime and discrimination met radically weakened access to justice and enforcement. Assessment processes for disability benefits were made so punitive (as they were aimed at achieving huge spending cuts) that some disabled people were led to suicide. Median pay is significantly higher for non-disabled than for disabled employees. Overall there was a reversal of the limited equality gains in the decades prior to 2010. In 2017 A United Nations investigation condemned the British government for ‘grave or systematic violations’ of disabled people’s rights.
These are the kind of material conditions into which any legalisation of assisted dying would be introduced. ‘Safeguards’ to prevent those whom others may consider have lives not worth living from pressures to end their lives would require huge social, economic and political advances. Certainly, no effective ‘safeguards’ protected disabled people in the face of covid.
Proposed legal changes – their contradictions and implications
In England and Wales, the Suicide Act 1961 abolished the crime of suicide, allowing for suicide and attempted suicide to become less stigmatised and, properly, addressed as an emotional or mental health issue. At the same time, it remained a crime to encourage or assist a person to commit suicide (in Scotland suicide was never a criminal offence and while assisting a suicide could constitute murder there have been few legal cases). In response to a regular series of legal and political challenges, in England and Wales, courts and parliament have upheld this limitation, in the understanding that some people may experience pressure to end their lives and the potential for abuse should be taken seriously and prevented. Such pressure may not be crude and direct but rather would include the nature of public discourse, the internalisation of prejudice and discrimination, the impact of inadequate care, medical and support services, or social isolation and deprivation. Whether or not a disabled or terminally ill person, for instance, comes to feel they are a ‘burden’ and in response wishes to end their life is the end point of a whole string of political decisions.
Internationally, assisted dying (assisted suicide or voluntary euthanasia – these are distinguished by differences in the degree of third person involvement or direction) is permitted in a small but growing number of states. These include Belgium (which also became the first country in the world to legalise euthanasia for children in 2014), the Netherlands, Luxemburg, Switzerland, the US states of Oregon, Vermont, Montana, Washington and California. Canada made voluntary euthanasia legal in 2016 and the Australian state of Victoria in 2017. As of January 2021, legislation in Portugal awaits presidential sign-off. In Spain parliament is considering legislation and in Italy the constitutional court recently ruled that it was not always a crime to assist a suicide. A debate is being played out in Austria between the courts and parliament. In 2020, the Netherlands extended the law on assisted suicide to children under the age of 12.
In the same year, the Netherlands also made it lawful to euthanize a person with dementia who could not confirm their wishes at the time of the procedure. That change is important not just for the specific case of dementia but for the question of advance directives on euthanasia in general. One problem with this is that research shows that people may change their mind: having made an initial decision for assisted suicide when, for example, faced with the shock of a difficult health diagnosis, people may reverse their initial view if and when their fears about the future, the progress of their illness and their healthcare are addressed.
As can be seen, once the fundamental direction of law is changed – to permit third parties, and in particular medical professionals, actively to end lives, it is a secondary matter to widen the scope of the law. Hence in both Belgium and the Netherlands, for example (where a statement of ‘intolerable suffering’ is sufficient and terminal illness is not required) eligibility has been broadened to children and to specific illness groups. Likewise, in Canada, where there is also no terminal illness stipulation and a person can be euthanized if their death is ‘not too distant’, mental illness makes an individual eligible. By this logic, an answer to suicidal depression would be to facilitate the suicide.
In Britain, despite repeated defeats attempts to change the law continue. There was a particularly sustained focus in 2010-12 under the auspices of the Commission on Assisted Dying (CoAD), chaired by Charles Falconer, who is a determined advocate of assisted dying being legalised. Presenting itself as developing an evidence-based case for change in the law this Commission – set up via Dignity in Dying (formerly the campaign for voluntary euthanasia) – was part of an ongoing campaign to popularise the case for such a change and create a more favourable ideological context for parliamentary and legal proposals. The Commission’s terms of reference and recommendations were criticised by disabled people’s organisations at the time. Lord Falconer has since proposed at least two private members bills in parliament (2014 and 2019, with the latter still in process) to make assisted suicide lawful. Coinciding with the latest bill, 18 police and crime commissions signed a letter calling for an inquiry into changing the law.
The CoAD proposed a change in the law to allow assisted death where adults have a terminal illness and have made a ‘voluntary choice’. Its report defined ‘terminal’ as a condition deemed by medical opinion (two doctors) to lead to a person’s death within 12 months. In the parliamentary bills that followed this was reduced to six months. The change reflects the well understood difficulty in predicting when a person’s health condition will lead to death – particularly when that appears many months off. Indeed one of the objections from disabled people is that attempts to frame eligibility criteria in terms of ‘terminal illness’ and likelihood to die within a certain time frame often simply describes the living reality of a disabled person with a significant impairment and this forms part of the bias in how disabled lives are viewed: ‘According to the definitions of “terminal illness” used in the model statutes proposed by right-to-die advocates and applied in several court rulings upholding that “right”, I am terminally ill, and I have been for the past forty-three years.’ (Paul Longmore, a disability rights advocate and academic, writing in 1997 in response to US state legislative proposals).
Assist dying laws and the threat to disabled people
This is one example of the argument advanced by disability equality campaigners: that it is impossible to frame law on voluntary euthanasia or assisted dying that will not in its interpretation have a prejudicial impact on how disabled people’s lives are understood, and the expectations and assumptions that disabled people will meet. Actor (and pro-choice on abortion supporter, atheist, and activist) Liz Carr argues that there is such a confusion in public and medical understanding between disability and terminal illness that they are seen as one and the same. As she puts it: ‘the assumption becomes that people like me must find life unbearable and that, of course, we’d want to end our lives.’ It is these same assumptions that in part explain that disabled people were reportedly facing pressure to sign DNRs in unprecedented numbers during the Covid pandemic.
Failing in parliament on a number of occasions, pro-euthanasia campaigners in Britain increased their focus on the courts. A string of test legal cases have been taken by individuals, supported by lobby organisations such as Dignity in Dying (formerly the Voluntary Euthanasia Society). While some of these cases have been taken by people with advanced progressive health conditions, others featured disabled people with no terminal illness and who are not dying (e.g. Tony Nicklinson, who had experienced a major stroke resulting in significant paralysis). While Dignity in Dying formally says it supports changing the law only for those with terminal illness and six months to live, their publicity and support to cases of non-terminally ill disabled people shows this to be a tactical decision as to what legal change they assess may have the best initial chance of parliamentary progress at present. As has happened elsewhere, there is every reason to believe that any initial change in the law would be followed by pressure to broaden its scope to non-terminally ill disabled people.
Such legal cases attract disablist media attention which focuses on the limitations of life with significant impairment: e.g. portraying life (with the type of daily personal assistance many disabled people require and which can facilitate an engaged life) as undignified, detailing a person’s ‘dribbling’ and ‘twisted and broken’ character and so on. Through such a lens a sharp line is drawn between the supposedly independent non-disabled subject and the highly dependent, deficient, disabled person. Hardly surprising that death is seen as a release from such a life – about which, it is suggested, nothing can be done. The reality – that impairment is part of human variability the disabling impact of which is ultimately determined by the logic of capitalism which values human beings purely as productive units – is obscured.
The impression given by legal cases fronted by disabled individuals, together with the media coverage they receive, stands in sharp contrast to the views of politically organised disabled people’s organisations. Groups such as Not Dead Yet or Disability Rights UK or charities like Scope vocally oppose assisted dying laws. Coinciding with the Commission on Assisted Dying, Scope conducted research which found widespread concern about a change in the law, including that 70 per cent of disabled people would be concerned about pressure being placed on other disabled people to end their lives prematurely.
Medical opinion also continues to be opposed to changing the law: the British Medical Association reaffirmed its position against assisted dying in 2020 and said that ‘ongoing improvement in palliative care allows patients to die with dignity’. However, a survey in 2020 also returned more in favour than against changing the law to allow prescribing lethal drugs to patients to self-administer. At the same time respondents were more opposed than supportive of doctors being involved in assisted dying. This is a continuing discussion and there is clearly a lobby in medical circles for change. Many argue that doctors having any role in assisted dying would fundamentally alter the patient-doctor relationship. It needs to be remembered that it is currently lawful to withdraw medical treatment, if there is no medical benefit and even if it will hasten death, is lawful, as is the provision of pain relief that may have the secondary effect of hastening death.
Similarly, as things stand, despite it being illegal actively to assist a death, prosecutions are rare: between 1 April 2009 and 31 July 2020, of 162 cases referred to the CPS by police 107 were not proceeded with by the CPS and 32 cases were withdrawn by the police.
The material context in which legalisation of assisted suicide is contemplated is one of a retreating welfare state, reduced health and social care provision, increasing inequality and poverty and even a stalling of life expectancy and increased inequalities in life expectancy. In addition, such a law would be introduced in the context of a deep misunderstanding and failure of empathy about disabled lives. Tackling the social factors which lie behind exclusion, isolation, suffering and despair must be the priority. To normalise the idea of ending life as a response to pain, disability or terminal illness would be extremely dangerous and should not be supported.