Professor Allan House
Anybody who has been following the campaign for ‘assisted dying’ will not be surprised that Liam McArthur’s Bill lacks detail and leaves several important questions unanswered. Here I review the Bill and try to answer the questions outlined in a previous blog on what exactly it is that assisted dying campaigners want.
Q1: What exactly is the practice to be legalised?
The aim of the Bill (Section 1) is to make lawful the provision to terminally ill adults (aged 16 or older) of assistance to end their own lives. Only on Page 8 Section 15 does it say what “assistance” might mean: a coordinating registered medical practitioner can “provide a terminally ill adult with an ‘approved substance’ with which the adult may end their own life.” And it is only in the accompanying explanatory notes (paragraph 42) that it is noted “The person must self-administer the substance.”
This sounds like assisted suicide but the two key terms here are “provide” and “self-administer”. Neither is further defined. Can a doctor “provide” an approved substance by inserting a naso-gastric or PEG-feeding tube as might happen if a patient were being provided with supplementary feeding? Or set up an intravenous infusion as they might if providing parenteral nutrition? In which case “self-administer” might mean no more than working the on-off switch. When this latter sort of arrangement is used to provide post-operative pain relief it is called patient-controlled analgesia (PCA for short). When used to end life it sounds less like physician assisted suicide and more like patient-controlled euthanasia.
There is a further problem with lack of specificity. An additional requirement (Section 15) is that whichever practitioner provides the approved substances must remain with the adult, at least in the same building, until they change their mind or if they accept the approved substances, until they die. The Bill offers no explanation for this requirement but the reason is likely to be that the health practitioner is required to be on hand to manage problems. There is no indication in the Bill of what attending clinicians in Scotland are expected or allowed to do in the event of distressing complications or long-delayed death. A substantial component of the “assistance” allowed under the Bill is therefore simply not defined.
Q2: Who exactly will be eligible?
The three-line definition (Section 2) of who is eligible for assistance refers only to terminal illness with no mention of symptoms or unendurable suffering.
Despite the use of “terminal illness” to describe the main eligibility criterion there is no mention of the likelihood of imminent death In Section 2 or elsewhere in the Bill. The defining features of terminal illness in the Bill are that it can reasonably be expected to cause the adult’s premature death, that it is advanced and progressive and that it is a condition from which the adult is “unable to recover”. These sound like substantial constraining criteria but they are not. Most people imagine that “terminal illness” is synonymous with “about to die” but “advanced” has no standardised definition and is not defined further in the Bill or the explanatory notes. The definition, far from referring only to a small number of people in their last days or weeks, covers large numbers of the population. From the accompanying policy memorandum (Paragraph 44), there is explicitly no time scale according to which the whole process is required to unfold.
Q3 What safeguards (clinical and social) will be in place?
Much of the appeal to support “assisted dying” is built around the idea that it is the individual’s right to exercise their personal preference (choice). It is the basis for McArthur’s interest: the policy memorandum accompanying the Bill mentions (Paragraph 4) only his belief that “an individual’s personal autonomy to decide…how their life should end in situations of terminal illness, should be protected in law…”.
This approach comes with a particular and very limited view of the assessment that has to be undertaken prior to provision of approved substances (Sections 3-7). Apart from certain bureaucratic requirements – proof of identity, age 16+ years, residence in Scotland for at least 12 months, registration with a medical practice in Scotland – the only medical or other requirements are the presence of terminal illness as defined in the Bill, presence of mental capacity as usually defined legally, and absence of coercion by others. Mental health is only considered to the degree to which it impairs mental capacity. No detailed attention is given to the complex business of how to identify coercion (the Crown Prosecution Service website offers 32 pointers towards the presence of a controlling or coercive relationship and points out that the list is not exhaustive.)
The main direct risk in assisted dying legislation resides, however, not in these usually floated ideas about mental incapacity or coercion but in the risk it poses to people who see no other choices – maybe living alone and lacking social or emotional support, financial security or psychological resilience. These are the risks for suicide associated with physical illness and they would be the focus of any careful assessment of a person encountered in clinical practice who said they wanted to end their life. It hardly needs saying that they do not resemble in any way the features of the self-confident, articulate and well-connected celebrities fielded by campaigners and the media in support of assisted dying legislation.
Given these risks, the assessment process looks dismayingly thin. There is no requirement to explore social or psychological factors such as those routinely explored in other settings when somebody has thoughts that life is not worth living – for example the ambivalence or sense of helplessness or hopelessness that might accompany such thoughts – or to know anything about the individual’s personal background or social circumstances. There is no requirement to know about previous mental health problems or, for example, previous episodes of self-harm or attempted suicide. Neither is there a requirement to contact or discuss the case with the person’s usual medical practitioner or other clinician who knows the person or to examine the person’s medical records. There is no requirement to contact the person’s next of kin (even for a 16 year old) or any other informant – not even the person who witnesses the “declaration” of desire for assisted suicide or euthanasia.
Q4 What legal safeguards will be in place?
The gaps in the Bill – and there are many – will be filled by guidance written by Scottish Ministers (Section 23) who are required only to consult such persons as they think appropriate. The guidance does not have to be presented to parliament for approval.
One of the safeguards against misapplication of important powers is the possibility of legal action brought by those who have been directly or indirectly affected, un-consulted family members for example. The Bill anticipates that and makes provision (Section 20 subsection 1) that providing lawful assistance (in the Bill’s terms) to assisted suicide does not give rise to any civil liability, and in subsection (2) that “Subsection (1) does not limit the circumstances in which a court can otherwise find that a person who has assisted another person to end their own life is not subject to civil liability.”
The most shocking part of the McArthur Bill is the proposal that a misleading death certificate should be issued. Section 17 subsection 2 says “…the terminal illness involved is to be recorded as the disease or condition directly leading to death (rather than the approved substance provided to them by virtue of section 15)”. It is difficult to reconcile this provision with the claim (Policy Memorandum paragraph 58) that “…the Member wishes assisted dying to be a transparent, accountable process…”.
There is a longer-term legal question that is mentioned only tangentially. McArthur’s Bill is presented in a libertarian framework of autonomy and the right to personal choice and in the policy memorandum (Paragraphs 96-100) it is argued that notwithstanding the ECHR’s lack of enthusiasm for the idea “the Bill proposed would enhance a person’s human rights”. This rights-based argument has been used in other jurisdictions to extend the initial remit of assisted dying legislation on the basis that it is discriminatory not to do so. In Paragraph 28 of the Policy Memorandum we are told that the Bill has more in common with legislation such as that in Oregon than it does with legislation such as that in Belgium and the Netherlands, without even a nod at the history of legislation in those countries (and Canada) where an initially restricted eligibility has been rapidly expanded in the name of rights and equity.
Q5 How will adverse events be monitored and responded to?
The Bill describes a rather circular process in which the Scottish Ministers provide information to Public Health Scotland (Section 25) which PHS then uses to prepare its annual report to the Scottish Ministers (Section 24). The annual report is then used as the basis for an annual report presented to parliament (Section 26) and after 5 years these reports form the basis of a review of the operation of the Act (Section 27).
These various reports are apparently to be based upon information collected via Schedule 4 appended to the Bill. They are largely bureaucratic, including little more than some basic demographic information, reason for the request, the substances used (but not their method of administration) and the place of death. Although “time between use of approved substance and death” is to be recorded in Schedule 4 it is not listed as being included in the annual reports. Indeed there is no information to be reported on adverse events such a symptoms, delayed death or regaining consciousness.
The 5-year review of the operation of the Act will include (Section 27.2.b) a note of “any concerns with the operation of the Act which have been noted”. However there is no mandatory requirement to ascertain or report protocol violations or adverse events in the annual reports and there is no requirement to obtain formal public feedback on the operation of the Act. It is difficult to know, therefore, what “concerns” might be reported and by whom. There is no indication of the criteria against which concerns will be judged and unsurprisingly therefore there are no stopping rules even hinted at.
Reading McArthur’s Bill is not reassuring for anybody worried about the risks that are posed by legislation aimed at legalising assisted suicide or euthanasia.
Professor Allan House BSc (Lond), MBBS (Lond), MRCP (UK), MRCPsych, DM (Nottm) is emeritus professor of liaison psychiatry at the University of Leeds. He has worked as a consultant liaison psychiatrist in the NHS and as an academic researching and teaching in Nottingham, Oxford and Leeds. His areas of expertise focus on the overlap between physical and mental health, especially in people with severe physical illness, and on self-harm and suicide.
Source: The Assisted Dying for Terminally Ill Adults (Scotland) Bill and the papers associated with it, including explanatory notes and policy memorandum are available online at: https://www.parliament.scot/bills-and-laws/bills/assisted-dying-for-terminally-ill-adults-scotland-bill/introduced accessed 4 August 2024