The Health and Social Care Committee Report on assisted suicide/assisted dying: Another opportunity for the legislature (and even the judiciary) to deliberate on end-of-life in England and Wales

Abstract

The article highlights the importance of the 2024 Report produced by the Health and Social Care Committee following an inquiry of assisted suicide/assisted dying. It notes the important role of the legislature, especially considering the work that is done in Parliaments across the United Kingdom at this moment but also for the judiciary if and when the opportunity arises again to review the human rights compatibility of assisted suicide/assisted dying.

Introduction

Interested parties are currently, and rightly so, focusing on the scrutiny that has been carried out by the Public Bill Committee of the Terminally Ill Adults (End of Life) Bill (‘the Bill’) for England and Wales. ¹ There are various and vexed questions around eligibility, scope, safeguards and how the right balance is to be struck between choice and safety, a priori and a posteriori models and their efficiency, palliative care and the need for equal access. Whatever happens with the Bill at Westminster, the publicity this is receiving at all echelons of society will hopefully take us a step closer to more comfortable and open conversations around death and dying, allowing us to reflect, document, plan, and implement our end-of-life choices, if we choose to. This debate also highlights the importance of re-considering funding that goes into palliative care, including hospices, end-of-life care and research.

A couple of months before the Bill’s introduction to Parliament, the House of Commons’ Health and Social Care Committee (‘the Committee’) published a report on assisted dying/assisted suicide (‘AD/AS’), ² to inform, as they note, both Parliament and the wider public on the subject. ³ The Report is obviously timely in light of the ongoing debate in Parliament on the Bill. However, it is also a significant piece of work for reference by the judiciary in the context of any future judicial challenges of the criminal prohibition of assisted suicide and euthanasia, for healthcare professionals (HCPs) and their professional organisations carrying out relevant discussions, but also for public deliberations on broader end-of-life questions.

In this commentary, I first provide a short background to the 2024 Report, commenting in particular on why I think this inquiry has taken place. I make two comments as a result of my own reading of the Report: the first relates to the role of HCPs in AS/AD, and the second relates to the physical condition of the individual requesting assistance, an important ‘healthcare’ aspect, which could arguably have been given more prominence in the Report. I conclude by advocating a role for primarily the legislature, but also the judiciary when, and if the opportunity arises.

Background of the Report

The Committee reports on the AD/AS legal context in the United Kingdom (as a whole), law and practice in jurisdictions where a form of AD/AS is regulated, the role of HCPs in assessing eligibility and capacity to give informed consent, and palliative care and its relationship with end-of-life care in the context of AD/AS. The Committee focused in particular on the last two of these points, the ‘human elements’ of AD/AS (‘the healthcare aspects’). ⁴ In general, such inquiries are not new, evidence of the continuing interest on the subject at individual, political, and societal levels and the need for informed deliberations and the vital role of experts. For instance, a privately funded Commission reported in 2012 that the law in England and Wales is ‘inadequate and incoherent and should not continue’. ⁵ The Commission made a number of recommendations, including that ‘it is possible to devise a legal framework that would set out strictly defined circumstances in which terminally ill people could be assisted to die, while providing upfront safeguards to protect potentially vulnerable people’. ⁶ In 2005, a House of Lords Select Committee also carried out an inquiry, this time specific to the Bill at the time before Parliament, ⁷ publishing three reports and making various recommendations. ⁸ I consider the 2024 inquiry and the Report of this Committee crucial for reasons I set below.

Why is the Report important

First, in my view, the Report helpfully discusses and documents new (at least since the last inquiry) legislation around the world (including in Canada, Australia, New Zealand, Austria, Portugal, Spain), as well as important legislative changes post-regulation, including, for example, the expansion of the law in Belgium in 2014, and the amendment of legislation in Canada in 2019. ⁹ There is an abundance of new data from these jurisdictions that can be used, where appropriate, to inform current debates, that again highlights the crucial role of experts. A parliamentary ‘record’ of these legislative developments are a crucial reference point for all those considering change. When new legislation is proposed, as is the case now, careful study of lessons learnt from abroad and what can be usefully transplanted in line with this jurisdiction’s legal norms, culture, society, and politics is crucial. Second, it is my view that the 2024 Report is significant because it reflects on the current situation regarding AS/AD in England and Wales, Scotland, and the UK Crown dependencies (the Isle of Man and Jersey) at a pivotal moment when significant developments are taking place. ¹⁰ Enactment of legislation in any part of the United Kingdom, and/or nearby Ireland ¹¹ will raise challenging questions for the legislature, the judiciary, HCPs and their patients, and will likely present dilemmas for residents in England and Wales seeking access, a challenge also acknowledged in the Committee’s 2024 Report. ¹² Meaningful engagement with the matter is therefore urgent both from the legislature and from the judiciary (when, and if the opportunity arises). The 2024 Report is an opportunity for such expert engagement, which among other things, I take to mean an engagement that is informed, that is, led by experts and interested parties (including individual patients themselves). The Committee has provided us with a synthesis of important evidence, including data and the experience of jurisdictions which already permit a form of AS/AD, challenges they faced, and lessons learnt. I refer to this synthesis of evidence simply as ‘evidence’, as also reflected in the language used in the Report itself. ¹³

Why now

The 2024 Report itself does not make entirely clear why the inquiry was carried out when it did. It is my view that it was carried out at the time due to several possible reasons. One reason could be that some UK Supreme Court (‘UKSC’) Justices, among them Lords Neuberger, Mance, and Wilson, noted the need for the UKSC to have access to ‘evidence’, in the influential case of Nicklinson in 2014. ¹⁴ The evidence was needed, for some of the Justices, to allow a human rights compatibility assessment of the prohibition of assisted suicide. ¹⁵ As a condition in itself for carrying out the compatibility exercise it is contentious, and I challenge this elsewhere. ¹⁶ This specific approach to the compatibility exercise was very likely inspired by how legislation came to be in Canada. Smith J’s analysis of the evidence that was made available to her in Carter ¹⁷ in the British Columbia Supreme Court in 2012 led to a finding that the relevant prohibitions were not in line with certain constitutional provisions. ¹⁸ Subsequently, that finding led to the introduction of federal legislation. Here it is worth noting that the approach of the Justices in Nicklinson, as inspired by Carter, affected how legal strategy was formed in the succeeding cases of Omid T ¹⁹ and Newby, ²⁰ in which the claimants unsuccessfully tried to convince Courts to accept the rare approach to judicial review in allowing them to use primary, oral evidence with cross-examination. In Nicklinson, the lack of ‘primary evidence’ in fact did not stop Lady Hale and Lord Kerr from engaging with the compatibility exercise and dissent. The inquiry and its subsequent Report could be ‘the evidence’ that was missing for the judiciary to engage in a compatibility exercise in a future court challenge of the prohibition, or post-legislation, of an aspect of the law. I will return to some of these issues later when I highlight a role of the judiciary.

A further reason this inquiry was carried out is likely because it was directly campaigned for by Members of Parliament, members of the police force, assisted dying campaigners and claimants themselves over the last decade. ²¹ During the general debate on 4 July 2022 in the House of Commons on an e-petition calling for the Government to legislate on AS/AD, ²² a call for ‘a national conversation [. . .] if not an inquiry’ was also made.^{23 This only but just reminds us of the multi-faceted aspect of the subject, and the need to accomodate all voices at all levels of society.}

In my view, the need for a regulatory framework in England and Wales (but also across the United Kingdom) is indisputable. My argument relies on several considerations, including an argument rooted in human rights, ²⁴ certainly also supported by the data of the number of people travelling abroad from the United Kingdom to access the service, ²⁵ and by reports of some individuals seeking alternative, unregulated, and potentially unsafe ways to end their lives in the United Kingdom in the absence of the choice domestically. ²⁶ For this choice to be made available, AS/AD should be regulated in a transparent, safe, and inclusive manner, with careful implementation and a clear role for all those involved, including HCPs. A domestic framework, to some extent, is also very likely to reduce certain inequalities, considering, as the Committee also notes, that the only safe option for those wanting to control how and when to die at the moment is to travel abroad, and this is only available to those physically and financially able to travel. ²⁷

Developments domestically and globally can no longer be ignored. The legislature and judiciary have a role to play in deliberating on AS/AD, and the Committee’s Report, although not exhaustive, offers a solid starting point, especially with regards to the healthcare aspects. The extensive scrutiny of the Bill by the Public Bill Committee is a step in the right direction by the legislature.

In the following part, I proceed to make two comments as a result of my own reading of the Report, acknowledging that my comments are by no means exhaustive neither representative of the extensive work that has been carried out. I comment first on the role of HCPs in AS/AD, and then on the physical condition of the individual requesting assistance. The latter, in particular, is an important healthcare aspect, that requires the input and involvement of HCPs, which could have been given more space in the Report.

HCPs and AS/AD

All jurisdictions which permit a form of AS/AD require the involvement of HCPs to a greater or lesser degree. In very broad terms, HCPs, who receive the initial and any subsequent requests or declarations for assistance, are required to assess eligibility, including the individual’s physical and/or mental condition and capacity, ensure that the individual is deciding voluntarily and after receiving sufficient information, and assist the individual or bring an end to the individual’s life. The role of the HCP is therefore not just important, but absolutely crucial in the process. In that respect, the Committee rightly focused on the healthcare aspects of AS/AD, also because even with the current domestic prohibition, HCPs are sometimes approached by their patients who seek information, or specifically ask for documentation to access this service abroad.

Considering the crucial role HCPs will have in a future regulatory framework in England and Wales, and because of the involvement they already have when patients seek information (despite the prohibition), the Committee offers vital insights into healthcare aspects, which cover the position of HCP organisations in England and Wales, ²⁸ issues around conscientious objection, ²⁹ the impact of legalisation on the doctor–patient relationship, ³⁰ and good practice around safeguarding and assessing eligibility. ³¹ There was, however, scope for the Committee to have engaged perhaps further with practical suggestions made by healthcare organisations.

Current and future role of HCPs in the context of AS/AD

Access to an ‘accompanied suicide’ in Switzerland, the only jurisdiction that allows non-nationals access under strict conditions, requires extensive documentation to be presented by the individual. Dignitas, for instance, requires a letter by the individual, a biographical sketch of the individual’s life, and a number of old and current medical reports (which include the individual’s history, diagnosis, and any treatment plans, as well as prognosis). ³² Current professional guidance, including by the General Medical Council (‘GMC’), ³³ the British Medical Association (‘BMA’), ³⁴ the Royal College of Nursing, ³⁵ is, in some respects, clear that, any active involvement in providing documentation for the purposes of accessing an assisted death abroad, beyond providing advice and information, may raise fitness to practice questions. Nonetheless, in practice, confusion and moral dilemmas are presented when a patient approaches a HCP for this purpose. ³⁶ On one hand, some HCPs may consider that providing the patient with the required documentation and providing information is in line with their general duties towards their patients, among other things, alleviating suffering and respecting choice; others may consider the rationale of the current law to be sufficient reason to justify their non-involvement. Some evidence exists to support the argument that the current law and its practice sometimes leads to inconsistent practice, ³⁷ perhaps suggesting that the balance between safety and choice is not achieved. Depending on the HCP and their approach, some individuals may be denied access to this documentation, and to an extent, their only viable option of controlling the timing and manner of their death.

While the Report comments on this aspect of AS/AD, ³⁸ more is perhaps needed to engage HCPs and the relevant professional organisations in the deliberation of the most challenging aspects of AS/AD. There needs to be scope for a discussion also of the importance of allowing HCPs to opt out if they conscientiously object, but while not obstructing access for patients, especially in geographical areas where not many HCPs may be available. One way this could be approached may be identifying how many patients per year (at this moment) approach their doctors with requests for documentation and/or information on AS/AD. It could lead to some data, by no means precise or determinative, that could be useful in current deliberations for legislation.

Regarding documentation, the BMA and the GMC have already responded to the Committee’s recommendation for clearer guidelines. Both bodies note that the distinction drawn in their member guidelines is clear. Indeed, the guidelines obviously allow patients access to their medical records but discourage HCPs from preparing a report specifically to facilitate an assisted death abroad. ³⁹ Despite the fact that the situation may be clear for these organisations, confusion may still exist among individual patients and their loved ones (especially considering that even for the Committee itself, the situation did not immedidately appeared to be straightforward). As a minimum, raising public awareness of what is allowed and what is not will ensure that patients know what is available to them, while ensuring that HCPs will feel more confident about what is expected of them.

I have previously also hinted that the Committee could have further engaged with practical suggestions from healthcare organisations. One such suggestion comes from the BMA, which, in its written submission to the Committee, proposes, among other things, an ‘opt-in’ model for HCPs that would allow doctors to choose which parts of the process to engage with, a specific conscientious objection related to AS/AD that would apply to all aspects of the practice, and a recommendation for AS/AD to be regarded as ‘a separate service’. ⁴⁰ These are all practical suggestions that need to be considered, with further input from HCPs and patients (and their loved ones) who have had or have some AS/AD experience.

The physical condition of the individual

There is not much in the Report by the Committee in relation to the physical condition of the individual as an eligibility criterion for access to assisted death. This is a key access criterion, one that attracts considerable debate and controversy. The question of ‘who’ should be eligible for an assisted death and the eligibility criterion that governs it is the one criterion for which most divergence is noted across jurisdictions permitting a form of AS/AD, as well as for which significant international developments have taken place. ⁴¹ Proposals for decriminalisation and regulation currently in the Parliaments in Scotland, ⁴² and England and Wales ⁴³ present differently-worded interpretations of the ‘terminal’ condition. Given how this eligibility criterion depends on the HCPs input, it is undoubtedly a matter within the Committee’s remit.

There is, of course, a second type of eligibility, one that is much broader than one concerning ‘terminality’; it has long been used in the Netherlands, Belgium, and Luxembourg, and now in newer regulatory frameworks, and allows access on the basis of physical and/or mental suffering under specific circumstances. The Committee could have addressed this alternative in greater detail considering its remit, as well as in light of arguments suggesting that ‘terminal’ eligibility is potentially discriminatory, non-inclusive, and scientifically tricky. Several questions need to be addressed in this context, including the introduction of a law that will exclude many individuals with non-terminal conditions, as well as practical concerns with the proposed eligibility criterion, especially regarding the identification of a prognostic period (which is set at 6 months in the Bill in England and Wales). There must be a solid justification, one that is potentially resistant to court challenges, for why some individuals would be permitted access to AS/AD while others would not, should a terminal illness eligibility criterion be applied.

The way forward: a role for the judiciary and the legislature

In England and Wales, court challenges via human rights legislation have led to the most significant developments in the law on assisted suicide. However, the criminal prohibition remains in place. The first such development was the finding that the prohibition in Section 2(1) of the Suicide Act 1961 prima facie interferes with Article 8(1) of the European Convention on Human Rights (and the Human Rights Act 1998), the right to private life, particularly the right to control the manner and timing of one’s death. ⁴⁴ This essentially places the onus on Member States of the Council of Europe with criminal prohibitions of AS/AD to provide legitimate justifications for the prohibition. This is significant because it ensures that there is a valid reason for interfering with such an intimate right. The second development resulting from court challenges through human rights in England and Wales was the issue of the law’s clarity in the case of Purdy concerning prosecutorial discretion, which led to the establishment of offence-specific prosecutorial guidelines. ⁴⁵ It is obvious, nonetheless, that the judiciary in England and Wales has a clear interest in the matter and a pivotal role to play in light of the jurisprudence related to the topic, including in the cases of Pretty, Purdy, and Nicklinson. Previously discussed was also the matter of ‘evidence’ as noted by the UKSC in Nicklinson. This is also crucial as it underlines not only a role for the judiciary, but also one that respects the sovereignty of Parliaments and illustrates how courts and Parliament can collaborate.

I argue that the publication of the 2024 Report by the Committee may serve as the ‘evidence’ that judges lacked in Nicklinson to conduct a human rights compatibility assessment of the criminal prohibitions of AS/AD, and if that is soon lifted, evidence that can be used to assess the scope and limits of the law. This Report, along with other data from jurisdictions permitting a form of AS/AD, can be utilised by the judiciary, which possesses the expertise and experience in end-of-life matters to evaluate what experience is transplantable and what would aid in determining whether a less-invasive-to-rights solution is achievable. Although, ultimately, the legislation would be introduced by the legislature, the expertise and experience of the judiciary are crucial as part of the ongoing dialogue between the courts and the Parliament. Since Newby, no court challenges have employed the ‘evidence’ strategy to contest the criminal prohibition, ⁴⁶ and in fact, there have been no cases, in general, challenging any aspect of the law on assisted suicide (The Suicide Act 1961) or euthanasia (provisions under homicide law, generally) since 2019. ⁴⁷ A synthesis of evidence has now emerged from the work conducted by the Committee, but also from new regulatory frameworks in Europe, Australia, and elsewhere. It would be intriguing to observe how this is addressed in a new challenge before the Courts across the United Kingdom, if current proposals fail or if future legislation is challenged (for instance, for its limited scope focusing on terminal illness).

As I note at the outset of this commentary, the Committee’s aim was to gather evidence to serve as the basis for discussion and debate in Parliament. ⁴⁸ The Committee’s message is therefore clear: it is now up to Westminster to utilise the evidence collected in the Report for an informed and in-depth debate, that prioritises expert input. However, this alone is insufficient. In England and Wales, Bills have predominantly been introduced and debated through Private Members’ Bills, and are time sensitive. ⁴⁹ Dedicated time is essential for such an important, multi-faceted issue, and the government must commit to discussing AS/AD as part of its legislative programme if the current Bill runs out of time. Subsequently, specialist committees should be established to examine key aspects of AS/AD, such as the Committee subject of this commentary which has focused on ‘healthcare aspects’. Input from HCPs, along with the lived experiences of patients, their families and other loved ones and carers, are crucial elements for consideration within these specialist committees, alongside the eligibility criteria concerning the individual seeking assistance. The House of Commons Committee has laid the groundwork for these specialist inquiries. I found particularly useful an observation in the written evidence to the Committee by The Equality and Human Rights Commission: the Government has a duty, among other things, they note, to ‘consider questions of equality and human rights when formulating policy or proposing new laws on this issue’, ‘to facilitate broad consultation prior to any legislative change’ (particularly with groups directly impacted by AS/AD), to cultivate ‘the social conditions in which legislation to enable assisted dying would not infringe on individuals’ rights’ (including universal access to palliative care, mental health services), and to provide ‘advice and education’ on all aspects of AS/AD. ⁵⁰ A time-limited debate in Parliament is not ideal, but hopefully enough. Legislation on AS/AD will only be introduced and successfully implemented if all stakeholders are confident in and committed to a framework that will serve the majority while striking the right balance between choice and safety. The responsibility now lies principally with the legislature; however, when and if the opportunity arises, there is also a role for the judiciary to fully utilise the Committee’s work and challenge the scope, limits, and safety of the law.