- August 9, 2024
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.
