Category: Assisted Dying

A Reader’s Guide: Lord Falconer’s Assisted Dying for Terminally Ill Adults Bill [HL]

It is 10 years since Charlie Falconer introduced his previous assisted dying Bill in the House of Lords. Plenty of time then to work on the detail of his new Bill and make sure it avoids the vagueness and sense of evasiveness that characterises the McArthur Bill currently under consideration in Scotland. Here I review Falconer’s 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 18 or older) of assistance to end their own lives. Section 4 goes into more detail. A suitably qualified medical practitioner prescribes drugs expected to be fatal when taken and an assisting medical professional (who may be a different doctor or a nurse) prepares those drugs for use. The assisting medical professional may “prepare a medical device which will enable that person to self-administer the medicine, and assist that person to ingest or otherwise self-administer the medicine”. The decision to self-administer the medicine and the final act of doing so must be taken by the person for whom the medicine has been prescribed. There is no definition of either the nature of allowed assistance or the minimum requirement for the final act to be defined as self-administration.

The nature of the medical device and the final act are unspecified but as written the Bill is compatible with insertion of a naso-gastric or PEG-feeding tube as might happen if a patient were being provided with supplementary feeding, or setting up an intravenous infusion as for providing parenteral nutrition. In which case the final act means 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). What Falconer’s Bill proposes is to legalise either physician assisted suicide or patient-controlled euthanasia, the decision to be decided by the parties involved at the time.

As with the McArthur Bill an additional requirement (Section 4.6) is that whichever practitioner provides the approved substances must remain in close proximity to the adult (but not necessarily in the same room) 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 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 – apparently to be decided later by the Secretary of State.

Q2: Who exactly will be eligible?

The definition of terminal illness (Section 2) that describes who is eligible for assistance describes an illness that is progressive, cannot be reversed by treatment and can “reasonably be expected” to lead to death within 6 months. Nobody doubts that the reasonable expectation will be wrong in a fair proportion of cases (10% or more from Oregon experience).

There is no requirement for intolerable symptoms or suffering. Section 2.2 says “Treatment which only relieves the symptoms of an inevitably progressive condition temporarily is not to be regarded as treatment which can reverse that condition.” This is a little ambiguous but is saying, I think, that a person who has no symptoms with or without treatment is still eligible.

Q3 What safeguards (clinical and social) will be in place?

There are certain requirements to be met in a clinical assessment (Section 3): two independent doctors must examine the person and the person’s medical records.  Presumably this means “such medical records as they can get hold of”: electronic health records for primary care, secondary physical health care and mental health care are frequently not linked and written case records are frequently untraceable. There is no defined minimum acceptable review of records.

From these sources and “in-depth discussions with the person” the two doctors must independently establish the presence of terminal illness as defined in the Bill, the presence of mental capacity as usually defined legally, and absence of undue influence coercion or duress. 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 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, physically restricted, financially insecure, with a history of mental health or alcohol problems. 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 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 or any other informant.

Q4 What legal safeguards will be in place?

The gaps in the Bill may be filled (Section 4.7 and 4.9, Section 8) by guidance and Codes of Practice written by The Secretary of State – I couldn’t find a note of which one. The regulations and codes of practice must be approved by both Houses of Parliament. Failure to follow any Code of Practice will not in itself render a person liable to criminal or civil proceedings.

Any regulations presented by the Secretary of State must “provide for the cause of death to be recorded as ‘assisted death’”. At least here is an advance on McArthur’s Bill.

Q5 How will adverse events be monitored and responded to?

The relevant Chief Medical Office must “monitor the operation of the Act including compliance with its provisions and any regulations or code of practice made under it” and present an annual report (Section 9). Since so little is specified, that seems to boil down to making sure the bureaucratic procedures are followed. The CMO’s report must specify the numbers of requests rejected but the Bill doesn’t say why – presumably to keep an eye on undue reticence in processing applications. There is no indication of what if any mandatory data collection will be required – for example there is no mandated recording or reporting of protocol violations or adverse events.

A 5-year review of the operation of the Act (Section 13) will report (a bit of a give-away here) “the extent to which the Act has been successful in supporting terminally ill adults in being lawfully provided with assistance to end their own lives” and to report “any concerns with the operation of the Act which have been raised”. However, since there is no mandatory requirement to ascertain or report protocol violations or adverse events in the CMO’s annual reports and there is no requirement to obtain formal public feedback on the operation of the Act it is difficult to know what “concerns” might be reported. There is no indication of the criteria against which concerns will be judged and unsurprisingly therefore there are no stopping rules even hinted at. There is no research project in which I have been involved that would have been approved and funded on the basis of this level of (lack of) scrutiny of risks.

The Bill is brief – nine pages and one appended schedule – and missing much detail. As with McArthur’s Bill there are numerous gaps in the account of what is proposed and what practices are excluded, safeguards for the vulnerable are minimal and serious monitoring of risks and adverse events is bordering on non-existent.  It is difficult to read it as other than foot-in-the door legislation for an eventual Euthanasia Bill.

Source: https://bills.parliament.uk/bills/3741

A Reader’s Guide: Liam McArthur’s Assisted Dying for Terminally Ill Adults (Scotland) Bill

Anybody who has been following the campaign for assisted dying legislation 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 no mention of what self-administration would entail in other situations – for example when somebody is so physically impaired that they require a proxy to sign the declarations that set the process in motion.

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, physically restricted, financially insecure, with a history of mental health or alcohol problems. 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 and 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 – so no indication of what “concerns” would be sufficient to curtail or stop the programme. What’s an unacceptable error rate for a project the end point of which is the death of its participants?

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. There are numerous gaps in the account of what is proposed, safeguards for the vulnerable are minimal, and monitoring amounts to little more than head counting.

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

Assisted Dying – the more people know the less they like it

If you are being asked to consent to an operation you aren’t asked a single question: “Do you want an operation, yes or no?” It is explained to you what exactly the procedure is and what its likely benefits and possible risks are. And yet claims about massive public support for “assisted dying” are based on exactly that – a single question.

The situation is made worse by persistent evasiveness about exactly what it is that campaigners want legalised – right down to the practice of claiming it isn’t assisted suicide even while campaigning to have assisting suicide decriminalised. As a result of this evasiveness a 2021 poll conducted for the All Party Parliamentary Group on Dying Well found that only 43% of people knew that “assisted dying” was the same thing as assisted suicide, with many thinking it referred to a right to refuse active treatment (already legal) or that it was a synonym for palliative care.

A 2014 poll conducted by ComRes for the campaigning organisation CNK made clear the reasons for this vagueness – the more people know about assisted dying the less they like it. While 73% of respondents initially said they agreed with changing the law, when presented with some practical considerations in making the decision that approval rate fell to 43%.

Here are five questions every supporter of assisted dying should answer in detail before any support for their plans could be regarded as fully informed:

Q1: What exactly is the practice you want to see legalised?

A survey for Living and Dying Well published in July 2024 found that when the details of assisted dying were defined, the majority of respondents were not in favour of a change in the law. So clarity without euphemism is needed. The answer to this question must be either assisted suicide or euthanasia.  Most people imagine, when they have some notion of what assisted dying is, that a doctor will provide drugs that the individual then swallows – as in a typical suicidal overdose.  However both Liam McArthur’s Scotland bill and Lord Falconer’s bill of this year are compatible with a doctor establishing an intravenous infusion which the individual then starts running (with physical help if necessary). In other words a sort of patient controlled euthanasia. Going beyond the names –

Which drugs and what method of administration (oral or intravenous) are to be legalised?

A part of this question is:

What practice will be legal in the event of problems arising during the assisted death?

Supportive accounts invariably avoid the reality of how common problems are and good data are hard to come by: the best available review suggests – retching for hours (up to 10%), death delayed for hours or even days (up to 7%) and recovery of consciousness (up to 4%). What additional interventions can be made if these problems occur? In Canada, clinicians can administer additional lethal drugs “to complete the process”. Is that part of proposed legislation?

Q2: Who exactly will be eligible?

Each of the common reasons given for assisted dying has its problems. Imminent death is difficult to predict except in the last days or weeks of life, and death may be months or years after somebody is deemed “terminally ill”. Life-limiting and incurable illness is extremely common and raises a spectre of use far beyond what was originally envisaged (7% of all deaths in Quebec are now by lethal injection).  Intractable suffering is the banner under which euthanasia or assisted suicide have been introduced for mental illness, a widely opposed indication among the general public.

An example of the importance of being clear and specific about eligible groups is Liam McArthur’s assisted dying bill in Scotland which is described as being about people with terminal illness but is in fact about people with life-limiting and incurable illness. One way into this question is to ask:

Are examples specified of conditions other than advanced cancer that will be included and any that will be excluded?

Q3 What safeguards (clinical and social) will be in place?

The privileging of personal choice is a feature of much of the support for assisted dying.  Assessment then comes to be focused on factors that might impair personal choice (sometimes in this debate called autonomy) – mental capacity in decision making, and lack of coercion. The presence of subtle or implicit coercion can be hard to detect.

How will coercion be assessed? For example, who else other than the candidate will be interviewed?

However, personal choice for one person may lead to risk for others – drink-driving, smoking in public places for example. Many of the leading risks for wanting to end life in the presence of physical illness are social – loneliness, living alone, low income and lack of employment, and a lack of social support. A history of problems with alcohol or drugs is also common. So is a history of mental health problems – typically not psychotic illness but recurrent episodes of depression. Suicide in the face of these risks is a result of a powerless feeling there are no other options. Identifying these risks requires an extended and sensitive exploration of social and personal circumstances; simply establishing mental competence and a lack of coercion won’t do. What assisted dying legislation does is create the framework of practice that puts vulnerable people at risk.

How will vulnerability factors be assessed? Will it be a requirement to consult a next-of-kin? Will it be a requirement to consult the individual’s usual general practitioner or other clinician familiar with their condition?

Q4 What legal safeguards will be in place?

Assisted dying legislation aims to exempt healthcare professionals from prosecution for assisting suicide. This leaves a question about assisting suicide when it is undertaken by somebody else – a spouse for example. It is this sort of scenario that has led PM Keir Starmer to suggest that decriminalising assisted suicide will be compassionate.

Will exemption extend to anybody who assists the suicide of somebody with an eligible clinical condition? Or will it be decriminalised only if the assisting person is a clinician approved for the purpose?

Conflict arises when family members do not agree with the assisted suicide of their relative, about which they may not have been consulted until after the event. Legislation has been drafted to protect clinicians from legal action in this situation, for example by allowing the issue of a false death certificate that names the cause of death as the eligible medical condition or by specifically proscribing civil action. 

Are protections against legal action a part of proposed practice and if so exactly what are they? Do they limit the reasonable rights of interested others?

Q5 How will adverse events be monitored and responded to?

There are two main types of adverse event: so-called protocol violations and unintended problems or complications. Protocol violations involve deviation from the practice laid down in legislation – the individual does not meet eligibility criteria, or the prescribed assessment process is not followed for example. Unintended problems include those listed above – emergence of intolerable symptoms or greatly-extended time to death for example.

How will adverse events be monitored in a way that ensures rapid and effective oversight?

All healthcare systems and procedures (vaccination programmes, surgical procedures and so on) have an adverse event rate. In fact all human endeavours do – including running nuclear power stations or flying passenger planes. Adverse event rates are used to determine stopping rules – the point at which the rate of negative outcomes outweighs the benefits. Stopping rules might include withdrawing a certain drug from use or closing a hospital unit because of poor outcomes.

How will adverse events be responded to and what are the specified stopping rules for an assisted dying programme?

You won’t find the answers to all these questions in either the McArthur or the Falconer bills. Why should you? After all, it’s just about personal choice.  Isn’t it?