Catholic Medical Quarterly Volume 75(1) February 2025

Notes in relation to the terminally ill adults (End of Life) Bill

Thoughts from a practising solicitor

I am opposed to assisted dying in general, but also have concerns about aspects of this Bill in particular.

Freedom of choice and palliative care

Supporters of assisted dying often claim that people with terminal illnesses should be entitled to choose to end their life rather than to endure suffering. However, until such time as palliative care is properly funded and available to all who may need it, this is not a genuine choice. The fact that a substantial majority of members of the Association for Palliative Medicine opposes assisted dying^[1] is, it seems to me, very telling. These are the very people who provide end-of-life care. Dr Rachel Clarke in The Guardian on 20 October 2024 wrote “my concern is that if we change the law without adequate resourcing of palliative care there will be people who choose to end their lives because they weren't being provided with the care they needed. I sometimes see patients near the end of life who come into hospital in unspeakable agony and want their lives to end. It is not because their pain cannot be prevented, but because they are not getting the care they need. Labour and Conservative governments have failed to provide adequate palliative care for patients”.

I have concerns that allowing assisted dying may lead to a worsening in palliative care provision; according to doctor Amy Profitt, a former president of the Association for Palliative Medicine, “New Zealand used to be ranked third in the world for the quality of its end-of-life care. After it introduced assisted dying in 2019, it dropped to 11th”[2]

The Slippery Slope

The “slippery slope” argument is a familiar one; the argument being that once assisted dying is made legal in certain circumstances, over time those circumstances may be widened and that may lead other classes of people to feel a sense of pressure to end their lives because they may be disabled, depressed or tired of living etc. The explanatory notes to the Bill point out that the Health and Social Care Select Committee report of 29 February 2024 found no evidence of a slippery slope, saying “jurisdictions which have introduced assisted dying on the basis of terminal illness have not changed the law to include eligibility on the basis of unbearable suffering” [3]. I would add the word “yet” to the end of that sentence. Many such jurisdictions have introduced assisted dying laws within the last 10 years, and a 10-year period is not a long time over which to judge evidence of legislative creep in respect of an issue such as this.

Legislative creep has, however, already occurred in Canada. Although the phrase “terminal illness” was not used in the initial legislation, “reasonable foreseeability of death” (a not dissimilar concept) was originally a requirement of Canada's Medical Assistance in Dying legislation. That requirement was declared unconstitutional by the Superior Court of Quebec, which led to its removal as a criterion for assisted dying, and ultimately to legislation earlier this year which allows medical assistance in dying for those with mental illnesses [4]

One can easily envisage such a development in England and Wales by the use of human rights legislation. In R. (on the application of Conway) -v- Secretary of State for Justice [2018] EWCA Civ 1431 [5], Noel Conway argued that the blanket ban on assisted suicide contained in section 2(1) of the Suicide Act 1961 (“the 1961 Act”) constituted a disproportionate interference with his right to respect for his private life under Article 8(1) of the European Convention for the Protection of Human Rights and Fundamental Freedoms (“the Convention”). His claim was unsuccessful before the Divisional Court, and he appealed to the Court of Appeal.

It was accepted by all parties, and by the Court of Appeal, that the right of an individual to decide how and when to end his or her life is an aspect of the right to respect for private life protected by Article 8 of the Convention. The Court of Appeal agreed that section 2 of the 1961 Act interfered with that right. Such interference can be valid if it satisfies the requirements of Article 8(2), that is to say, if it is “necessary in a democratic society” for one or more of the purposes specified in Article 8(2) [6]. The purposes which were relevant in the Conway case were “the protection of health and morals and the protection of the rights of others.” This requires the court to balance the rights and interests of the individual against the interests of society more generally.

The Court of Appeal held that “the balancing exercise under Article 8(2) falls to be carried out on the facts as they exist at the moment, and in the light of all that has taken place since [a previous case] and the precise scheme that is now put forward and the evidence adduced by the parties, which differs from that before the court in [the previous case]” [7].

The Divisional Court had concluded that the prohibition in section 2 of the 1961 Act achieves a fair balance between the interests of the wider community and the people in the position of Mr Conway and therefore did not contravene his human rights. The Court of Appeal agreed.

However, if any assisted dying bill were to become law, it would open the door to future human rights challenges as the balancing exercise under article 8(2) would be undertaken in a different context, which might well lead to a different result.

Normalisation of assisted dying and self-induced pressure

Legalisation of assisted dying normalises assisted dying as an option for people. Although some people may be very clear about their desire to end their lives, for others, they may suffer the stress of having to make a decision about this, amid concerns about being a burden on the NHS, or on their families, or financial concerns about the cost of nursing home care and worries about leaving money to the next generation.

Hasty legislation and lack of scrutiny

The Bill deals with issues which are of the utmost gravity. Any proposed law which considers matters of individual autonomy concerning life and death, which may fundamentally alter the protective landscape for ill, elderly and vulnerable people, and alter the essence of the doctor-patient relationship should receive extremely detailed scrutiny in Parliament. Yet this Bill seems to be being pushed forward with unseemly haste.

The Cabinet Office Guide to Making Legislation states, at paragraph 45.25, that if the government decides to take a neutral stance in relation to a private member’s bill, that must “be collectively agreed by ministers in the same way as supporting a private members bill, with a handling letter and accompanying documentation: a PBL [Parliamentary Business and Legislation] Committee memorandum, bill print and explanatory notes (where possible), impact assessment, legal issues memorandum and delegated powers memorandum. These must be sent to the PBL Committee and the relevant Policy Committee of cabinet at least one month before Second Reading”. From what I can tell from the UK Parliament website [8], that has not happened.

There is limited time for scrutiny of a private member’s bill, and there will be insufficient time for debate and in-depth consideration of such momentous legislative proposals.

Concerns over the text of the Bill

S2(1) For the purposes of this Act, a person is terminally ill if—

(a)the person has an inevitably progressive illness, disease or medical condition which can not be reversed by treatment, and

(b)the person's death in consequence of that illness, disease or medical condition can reasonably be expected within 6 months.

This definition, at first sight, appears straightforward enough. But what is “an inevitably progressive illness which cannot be reversed by treatment”? The definition seems to require certainty, not a reasonable likelihood, of death from the illness. The Explanatory Notes (at para 9) [9] refer to the terminal illness requirement in the Australian state of Victoria and state that 76% of applicants had late-stage cancer, suggesting that late-stage cancer meets the definition of “terminal illness”. Yet I have heard of a person who was given a terminal cancer diagnosis with 3-6 months to live, some 3 and a half years ago. With hindsight, she would not have met the criteria, but at the time of diagnosis, she would have done. To give another example, glioblastoma is an aggressive brain cancer with a poor prognosis. Median survival rates are poor, but there are documented cases of people being treated and surviving for over 20 years [10]. This is extremely uncommon, but does that mean that glioblastoma is not “an inevitably progressive illness which cannot be reversed by treatment”?”

Predicting life expectancy is also notoriously difficult. In the Conway case, the Court of Appeal summarised (at paragraphs 142-149 of the judgment) the expert evidence given in the case as to the possibility of predicting death within six months with any reliable degree of accuracy. How can Parliament consider allowing people to choose to end their own lives in the face of such prognostic uncertainty?

S4(1) No doctor has a duty to raise assisted dying
S4(2) But nothing in subsection (1) prevents a registered medical practitioner exercising their professional judgement to decide if, and when, it is appropriate to discuss the matter with a person.

Rather than assisted dying always being an issue to be raised by the terminally ill person, therefore, the option can be raised by a medical practitioner. Although there is now less deference to the medical profession, deferential attitudes are, I would suggest, more common among the elderly and vulnerable and the risk with this provision is that issues raised merely as options by medical professionals may inadvertently encourage people to seek assisted dying to avoid being a burden on the NHS, or on their families or to face the stress of having to make a decision on this, when they might not otherwise have considered it.

Section 1(2) provides that the terminally ill person must have a “clear, settled and informed wish to end their own life”. That must be assessed by two assessing doctors. A person’s views may change from day to day (as, indeed, may their capacity to make such a decision). How are the assessing doctors, who may only see the patient on one occasion, to assess whether the wish expressed by the person in their examinations is, in fact, a settled one?

The assessing doctors’statements will declare that “to the best of my knowledge and belief” the person the person has a clear, settled and informed wish to end their own life and has not been coerced or pressured by any other person into making their declaration. But the Bill does nothing to prescribe the steps which the doctors must take in order to acquire that knowledge and belief. Section 9 sets out certain matters which must be discussed, but the prescribed topics for discussion do not include specifically asking about coercion or pressure. Nor does the Bill require the assessing doctors to see the person on their own; this is a basic safeguard against coercion or pressure which ensures that the person has the ability to speak to the doctor without anyone else being present.

Doctors do not currently have the training and experience to assess whether the person is being coerced or pressured. These are not clinical matters, but personal and social matters. There is no provision for the assessing doctors to obtain expert evidence on the issue of coercion/pressure to assist them with decision-making in contrast with the provisions for expert opinions on whether the person has a terminal illness or has capacity to make the decision.

There is an interesting contrast between section 9(3)(a) and 9(3)(b). If the assessing doctor has any doubt as to whether the person is suffering from a terminal illness, they must refer to another doctor with qualifications in or experience of the diagnosis and management of the illness, disease or condition in question. Where they have any doubt as to capacity, however, the provision is merely permissive; they may refer to a psychiatrist or someone who has experience in making capacity assessments, but are not required to do so. The Explanatory Notes say [11] that “This is because there may be circumstances in which the doctor making the assessment does not require a specialist opinion to determine that the person does not have the necessary capacity”. If the doctor has doubt, it is hard to see what circumstances might exist which would not require a specialist opinion in order for the doctor to satisfy themselves that the person has capacity. A person may have capacity to make some decisions and not others; capacity is decision-specific. It could be argued that the greater the risk of harm to the person, the more stringent the capacity assessment ought to be, and that the assessment of capacity to make a decision to end one’s life should be subject to the highest stringency; a specialist opinion should always be required.

Capacity may fluctuate, and a person may have capacity one day and not the next. Should it be enough for the person to establish that they had capacity during two (potentially short) meetings with the assessing doctors or should a more stringent test be devised to ensure that a person has an ongoing settled capacity to make this decision?

If the independent doctor who undertakes the second examination will not sign the statement (i.e. following examination and consideration of the issues they are not satisfied that the person is eligible for assisted dying), the co-ordinating doctor is allowed to obtain a second opinion from another doctor (s10). Since any independent doctor chosen to undertake the second examination would be one who, in principle, is happy to sign such declarations (as there is no obligation on any medical practitioner to agree to undertake such examinations), their refusal to sign raises sufficient doubt as to eligibility that the process should be stopped at that point; it should not be possible to cure that by “shopping around” for a more favourable opinion.

S12 requires an application to the High Court by way of further safeguard. The High Court must make the declaration if it is satisfied that all of the requirements have been met. If the High Court is to be so satisfied, it must have evidence to that effect. S12(5), however, does not require the High Court to hear from the terminally ill person. It must hear from either one of the doctors (and may hear from both, but does not have to do so).

S12(5)(b) permits (but does not require) the court to question the doctor(s), and s12(5)(c) permits (but does not require) the court to require either doctor to attend court in person. Therefore, the requirements of the Bill would be met if the High Court simply received a witness statement from one of the doctors exhibiting the declarations and statements made previously. The High Court application could, therefore, in theory simply be an expensive rubber-stamping exercise. Without requiring in-person evidence and questioning of the terminally ill person and the doctors, it offers no real safeguard.

Summary and further thoughts

For the reasons set out above, this Bill should not be passed. It is clear that there is concern in many quarters that the current position on end-of-life provision for terminally ill patients is unsatisfactory. In addition to the lack of funding for palliative care, part of the problem may be because we are, culturally, poor at talking about death. Rather than see assisted dying as the way forward in dealing with the difficult issues in this area, a better solution might be to look holistically at end-of-life care (including better palliative care provision and funding, and education, training and awareness-raising concerning end-of-life matters) perhaps by the setting up of a committee along the lines of the Committee of Inquiry into Human Fertilisation and Embryology chaired by Baroness Mary Warnock in the 1980s.

Catholic Medical Quarterly