A Right to Die? The Role of Autonomy in End-of-Life Decision-Making

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Introduction

Before exploring the importance of autonomy in end-of-life decision making, it is essential to express what is meant by ‘autonomy’. One aspect of autonomy, emphasised by Dworkin, is the focus on ‘the integrity rather than the welfare of the choosing agent’[1] – this has important implications, especially when discussing the law’s approach to passive euthanasia. Autonomy serves to protect ‘the capacity to express one’s own character—values, commitments, convictions, and critical as well as experiential interests—in the life one leads’.[2] Part of the debate centres around whether this should extend to the nature of one’s death. This article will focus on two contrasting areas of end-of-life decision making in which autonomy holds vastly different levels of importance: firstly, passive euthanasia, and secondly, voluntary active euthanasia and assisted suicide. The final paragraph will be used to discuss the consequent incoherencies of the UK law on the subject, as it struggles to justify its stifling of autonomy in the latter scenarios.

Part I: The importance of autonomy in ‘passive euthanasia’

When reference is made to passive euthanasia, these are situations where the patient either refuses potentially life-sustaining or lifesaving treatment, or is already receiving such treatment and requests for this treatment to cease, thereby allowing them to die. Passive euthanasia cases may be broadly split into two distinct scenarios; the first will be referred to as the ‘incompetent patient’ scenario and the second as the ‘competent patient’ scenario. To deal with the incompetent patient scenario first, the patient’s condition inherently leaves little to no room for the role of autonomy in the decision – the decision of life or death is deferred to the clinical judgment of the doctor, who must determine whether prolonged treatment is in the patient’s ‘best interests’.[3] The case of Bland  provides the archetypical incompetent patient scenario; a patient is in a permanent vegetative state (PVS) and is unable to communicate his wishes.[4] It is demonstrably impossible for a patient in this condition to exercise any autonomy at the time of the cessation decision. This is not to suggest that the principle of autonomy is completely neutered, however it may only play a role in the incompetent patient scenario where the patient has previously expressed their treatment preferences whilst still competent, through an advanced directive[5] or a clear prior opinion.[6] Whilst this is a positive recognition of autonomy and self- determination by the law, patients like Anthony Bland who suffer sudden or unforeseeable medical emergencies cannot voice their end of life decision. Autonomy, then, has strictly limited importance in the incompetent patient scenario – the more relevant factors here being beneficence and non-maleficence, framed through the best interests test.[7]

A profound shift can be seen when the discussion moves to competent patient scenarios – autonomy becomes an inviolable principle. Of all the end of life decisions, the competent patient requesting passive euthanasia is the one in which the principle of autonomy is given the most importance, and this has been emphasised consistently throughout case law on the matter. The powerful force of autonomy in this context is perhaps best elucidated by Lord Mustill in Bland; ‘a doctor has no right to proceed in the face of objection, even if it is plain to all, including the patient, that adverse consequences and even death will or may ensue’.[8] Autonomy overcomes both objective best interests[9] and the principle of the sanctity of life.[10] The decision in Re T (Adult: Refusal of Treatment),[11] a case decided in the period just preceding Bland, emphasises the scope of autonomy even further than in the latter; the patient’s autonomy must be respected whether the factors behind their decision are ‘rational, irrational, unknown or even non-existent’,[12] their final decision not confined by the boundaries of being ‘sensible, rational or well-considered’.[13] The importance of autonomy is probably best demonstrated by the facts of Re B (Adult: Refusal of Treatment),[14] in which the patient was being sustained by an artificial ventilator after she had been left tetraplegic as a result of a blood vessel rupturing in her neck. Whilst she remained mentally competent, her medical carers had refused to remove the ventilator from Ms B despite her requests to do so. Dame Butler-Sloss P was unequivocal in her judgment that Ms B had a right to request the cessation of treatment; ‘[t]here is a serious danger, exemplified in this case, of a benevolent paternalism which does not embrace recognition of the personal autonomy of the severely disabled patient.’[15] Since the treating clinicians objected to removing Ms B from her ventilator, Ms B was transferred to another hospital where her choice to cease treatment was given effect. Jackson uses this last point (the ability of medical professionals to conscientiously object to ‘omitting to assault’ their patients) to criticise the act/omission distinction upon which passive euthanasia is predicated.[16]

Whilst that argument is not within the scope of this article, the sources Jackson uses can point to another argument – namely that it is not just the autonomy of the patient that is important, but also the autonomy and personal convictions of the treating clinician. The judgements in Bland and Re B[17] both allow clinicians to ‘abstain from involvement’[18] in instances of passive euthanasia. The guidance given to doctors by the General Medical Council is also clear that a conscientious objector to competent patient passive euthanasia may ‘withdraw from the care of that patient’.[19] The importance of autonomy in the competent patient scenario, both in terms of patient- autonomy and practitioner-autonomy, can therefore not be understated – it is the most important principle.

Part II: The impact of autonomy in ‘active’ and ‘assisted’ euthanasia

The transition from passive euthanasia to the more ‘active’ forms of end of life decisions, in this case voluntary active euthanasia (VAE) and assisted suicide (AS), involves a complete revaluation of the importance of autonomy. The inviolable principle of autonomy within passive euthanasia is supplanted by deference to the sanctity of life as well as the supposed upholding of public policy considerations towards the vulnerable within society.

In theory, there can be no room for the concept of autonomy in an illegal practice. Under the strict letter of the law, both VAE and AS are in such a position, with a practitioner providing VAE liable to be prosecuted for murder, and a person assisting another to commit suicide facing up to 14 years imprisonment under the Suicide Act 1961 section 2(1). However, a number of important cases have stimulated judicial discussion on the importance of autonomy in the areas of VAE and AS, especially its importance relative to other ethical and policy considerations. This chain of jurisprudence begins with R (Pretty) v DPP[20] where, amongst other arguments, Ms Pretty contended that the DPP’s refusal to disclose whether her husband would be prosecuted if he assisted her in committing suicide was in contravention of Article 8 of the ECHR.[21]The House of Lords were clear in their stance; the right of autonomy protected by Art.8 was directed at protecting personal autonomy whilst alive, and so was ‘not engaged at all’[22] in decisions of death. Whilst the rejection of Pretty’s argument may be unsurprising in a case that states that, ‘[t]he sanctity of human life is probably the most fundamental of the human social values’,[23] it is hard to support the outright rejection of autonomy’s role as a means of maintaining ‘dignity and self- determination at the end of [our] lives’.[24] This point was recognised by the ECtHR in the ensuing appeal, Pretty v UK,[25] who held that the prohibition of assisted suicide did engage Ms Pretty’s Art.8 rights. Whilst it may be true that, nominally, autonomy now held some importance in the judicial debates on VAE and AS, its relative importance was far from established, as the ECtHR came to the conclusion that the encroachments on Ms Pretty’s Art.8 rights were a necessary interference; ‘[t]he [Suicide Act 1961] was designed to safeguard life by protecting the weak and vulnerable, […] it is the vulnerability of the class which provides the rationale for the law in question’.[26] We can see from the Pretty jurisprudence that autonomy has generally taken a back seat to the sanctity of life and considerations of policy by the judiciary, Biggs summarising the Pretty cases as such; ‘Mrs Pretty lost her case because the Suicide Act 1961 could not be construed sufficiently flexibly to enable her to exercise her autonomy’.[27] A decade later came the Nicklinson jurisprudence. Initially, the Court of Appeal in Nicklinson[28] explicitly reinforced autonomy’s position at the bottom of the totem pole; ‘[t]here is no self-evident reason why [the sanctity of life] should give way to the values of autonomy or dignity and there are cogent reasons why sensible people might properly think that it should not.’[29] However, in what Hobson has described as a ‘radical decision’,[30] the Supreme Court, whilst still maintaining deference to the public policy consideration of protecting the vulnerable, stated that it, ‘is difficult to accept that [the policy considerations are] sufficient to justify a universal ban’.[31] Not only does this potentially promote autonomy over the sanctity of life as the more important contemporary principle, it also potentially opened the door to future debates on the decriminalisation of AS in limited circumstances. Despite the potential positive advancement for autonomy in Nicklinson, the more recent case of Conway[32] has applied the brakes somewhat. In what Hobson regarded as an ‘unjustifiably deferential approach’, both the High Court and Court of Appeal reached the conclusion that the issue of AS had been ‘satisfactorily addressed’ by Parliament.[33] If there were hope for a major, autonomy- based breakthrough in end of life decision making regarding AS and VAE post- Nicklinson, Conway has certainly dented that hope.

Despite the judgment of Conway, in moving to a practical assessment, I would argue that the current enforcement of the legal prohibitions on VAE and AS already implicitly recognises autonomy as a central principle. In the cases of AS, the DPP policy post-Purdy[34] specifically recognises the ‘victim’ reaching a ‘voluntary, clear, settled and informed decision to commit suicide’ as a public interest factor tending against prosecution.[35] Indeed, there is no record of a prosecution against anyone who has aided another to commit suicide at Dignitas in Switzerland – the main avenue that UK citizens have taken to commit AS. This seems to point to an acknowledgement by the DPP that it would not be in the public interest to prosecute someone who provides help in fulfilling someone else’s autonomous wish to die. Putting forward the same argument for VAE, despite prosecutions, there is no record of a doctor being convicted of the full offence of murder where they have acquiesced a patient’s express request to die. These actions have even been looked upon favourably; the defendant in R v Moor being acquitted after having been described by the judge as ‘a man of excellent character’.[36] Even in the case of R v Cox,[37] where the doctor was convicted of attempted murder, his punishment was a 12-month suspended sentence, with the GMC ruling him fit to return to practice within a year of this conviction. What McLean describes as, ‘the law’s actual rather than its theoretical approach to assisted dying’[38] demonstrates that autonomy is a far more important principle than the statute books and formal jurisprudence lead us to believe – in practice, the power of a person’s autonomous decision to end their own lives with assistance from another, is generally strong enough to protect the assistor from the harsh edge of the law.

Part III: The importance of autonomy across all end of life decisions.

Using the above assessments of the current law as it relates to passive euthanasia on one hand, and VAE and AS on the other, the posed question would have to be answered in the negative. The discrepancy between the inviolable importance of autonomy in passive euthanasia and its second-class status within VAE and AS is untenable. As asserted by RG Frey, it seems ‘little short of incredible’ that the presence of a life-support machine can so transform a case; regardless of whether the patient is or is not on a ventilator, both passive and active forms of assistance involve the patient and doctor exercising their autonomy to act in co-operation, and in doing so ‘acting together to produce that death’.[39] There may be a sense that to boost the importance of autonomy in VAE and AS to a similar level to passive euthanasia would be to create a ‘right to euthanasia’ – a corruptive right to be able to demand death on request. This is addressed by Orentlicher, who dismisses the idea that, ‘a right to euthanasia or assisted suicide would be a positive right to command aid’, as a mischaracterization of the true nature of a right to VAE/AS and the doctor-patient dynamic.[40] Quite distinct from a right to demand euthanasia services from a doctor, ‘the right would prevent the state from interfering when a patient and a physician voluntarily agree on a course of euthanasia/assisted suicide. Physicians would participate […] only if they were willing to’.[41] This would add far more coherence to the law in relation to autonomy’s importance; just as can be seen in cases of passive euthanasia, there is a system of reciprocal respect for autonomy as both the decisions of the patient and the physician are of substantive importance. It is apt to remember that in no jurisdiction where the practices of VAE and AS are legal and regulated is there a right to demand euthanasia; Ton Vink reminds us that, whilst Dutch citizens may request to end their lives, the practical decision is ultimately one for the approached physician.[42]

What is also questionable is the UK judiciary’s assumption that a prohibition on VAE and AS is necessarily the most effective way to protect the vulnerable members of society – or at the least, is necessary to the point of prohibiting these end of life options for all citizens. To promote autonomy as the principal value would allow vulnerable people, especially the elderly, to be coerced into choosing this route to end their lives, perhaps believing they are a burden. Firstly, fear of  becoming a ‘burden’ may be a legitimate and autonomously held consideration as to why some people would want to end their life, and would not necessarily imply coercion. As McLean has argued, ‘being a burden – rather than simply perceiving oneself to be – is arguably a morally acceptable and perfectly reasonable factor to take into account when planning for the future’.[43] As a corollary of this argument, there is room to make the further observation that part of the decision for a person considering withdrawing their life-support may be the fact that their condition is not only a burden for them, but for those around them, yet we do not question the validity of their autonomy in making this decision. Secondly, there are benefits both to the principle of autonomy and the protection of the vulnerable as a result of some form of legalization and regulation. As Battin noted in the context of the Dutch system, it allows the regulation of a practice that, ‘has been going on undercover and entirely at the discretion of the physician’.[44] Whilst a formulation of what regulation may look like is far beyond the scope of this article, a well-conceived system of assessment and review of requests would affirm and sanction the genuinely autonomous requests to access end of life services, whilst being able to protect the vulnerable by rejecting those requests made as a result of coercion and other non-autonomous reasons and referring that person to the relevant services. Indeed this approach is supported by Sylvia Law who, using the Oregon system as her guide, posits that, the practical concerns about coercion and abuse might better be addressed by legalizing physician-assisted dying and regulating it through policies [such as those in Oregon]’.[45] In short summary, the stark asymmetry in the importance of autonomy in different end of life decisions across UK law is untenable and incoherent, as are the arguments that seek to explain it. The UK must formulate a system or reform that enhances the position of autonomy in the areas of VAE and AS.

Conclusion

To answer the question of the importance of autonomy in end-of-life decision making is, as is plain to see in the above article, a two-sided tale. The first side: passive euthanasia, involving the withdrawal of life-prolonging treatment. On this side, autonomy reigns – it is the undisputed guiding principle of the area. Whilst autonomy is necessarily muted in the case of an incompetent patient, the focus of jurisprudence post-Bland has undoubtedly shifted to the competent patient, who actively requests that their medical practitioner adhere to their wish to cease treatment, allowing the patient to die on their own terms. On the other side, VAE and AS, where the importance of autonomy has almost always been overshadowed by pleas to the sanctity of life and, even more so, public policy considerations. Whilst it is true that in the years intervening the Pretty and Nicklinson cases, it appears that judicial attitudes towards VAE and especially AS had become more sympathetic, there remains a barrier of illegality stopping a truly meaningful judicial discussion on the importance of autonomy – this is reinforced by the attitudes of the courts towards AS in the Conway jurisprudence. This denial of VAE, AS, and the principle of autonomy that is a necessary corollary of those practices causes areas of great incoherency in the law. The areas of incoherency identified in this article included the lenient practical application of the law regarding VAE and AS, the uneasy distinction between passive euthanasia and VAE/AS, and the potentially flawed justification that this distinction exists to protect vulnerable members of society when in reality, an autonomy based model would fulfil this role.


[1] Ronald Dworkin, Life’s Dominion: An Argument about Abortion, Euthanasia and Individual Freedom (Harper Collins, 1993) 224.

[2] ibid.

[3] Airedale N.H.S. Trust v Bland [1993] A.C. 789.

[4] ibid.

[5] ibid, 816.

[6] (n 4) 865.

[7] R (on the application of Burke) v General Medical Council [2005] EWCA Civ 1003 [33], [56]-[58].

[8] (n 3), 891 (Lord Mustill).

[9] ibid

[10] (n 3), 859 (Lord Keith of Kinkel), 861 (Lord Goff).

[11] [1992] 3 W.L.R. 782

[12] ibid, 102 (Lord Donaldson MR).

[13] ibid, 116 (Butler-Sloss LJ).

[14] [2002] EWHC 429 (Fam).

[15] ibid, [94].

[16] Emily Jackson, ‘Whose Death is it Anyway?: Euthanasia and the Medical Profession’ (2004) 57 Current Legal Problems 415.

[17] (n 14) [57].

[18] (n 3) 874 (Lord Goff).

[19] Withholding and Withdrawing Life-Prolonging Treatments: Good Practice in Decision Making (GMC, 2002) s.28.

[20] [2001] UKHL 61.

[21] European Convention on Human Rights 1950, Article 8(1).

[22] (n 20), [26] (Lord Bingham).

[23] (n 20), [109] (Lord Hobhouse).

[24] Hazel Biggs, ‘A Pretty Fine Line: Life, Death, Autonomy and Letting it B’ (2003) Feminist Legal Studies 11(3) 291, 297.

[25] Pretty v United Kingdom (2346/02), [2002] 4 WLUK 606.

[26] ibid, [74].

[27] Biggs (n 24), 294.

[28] R (on the application of Nicklinson) v Ministry of Justice [2013] EWCA Civ 961.

[29] ibid, [54] (Lord Dyson MR).

[30] Clark Hobson, ‘Is It Now Institutionally Appropriate for the Courts to Consider Whether the Assisted Dying Ban is Human Rights Compatible? Conway v Secretary of State for Justice’ (2018) 26(3) Medical Law Review 514.

[31] R (on the application of Nicklinson) v Ministry of Justice [2014] UKSC 38, [313] (Baroness Hale).

[32] R (on the application of Conway) v Secretary of State for Justice [2018] EWCA Civ 1431.

[33] Hobson (n 30).

[34] R (on the application of Purdy) v DPP [2009] UKHL 45.

[35] DPP Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide (2010, CPS).

[36] [1999] Crim LR 2000 Jul 568-590 (Hooper J).

[37] (1992) 12 BMLR 38.

[38] Sheila McLean, Assisted Dying: Reflections on the Need for Law Reform (Routledge-Cavendish, 2007) 144.

[39] RG Frey, ‘Distinctions in Death’. In: Gerald Dworkin, RG Frey, and Sissela Bok (eds.), ‘Euthanasia and Physician- Assisted Suicide: For and Against’ (CUP, 1998) 35.

[40] David Orentlicher, ‘The Alleged Distinction between Euthanasia and the Withdrawal of Life-Sustaining Treatment: Conceptually Incoherent and Impossible to Maintain’ (1998) University of Illinois Law Review 837, 847.

[41] ibid.

[42] Ton Vink, ‘Self-Euthanasia, the Dutch Experience: In search for the Meaning of a Good Death or Eu Thanatos’ (2016) 30(9) Bioethics 681.

[43] McLean (n 38) 54.

[44] Margaret Pabst Battin, The Least Worst Death: Essays in Bioethics on the End of Life (OUP, 1994), 141.

[45] Sylvia Law, ‘Physician-Assisted Death: An Essay on Constitutional Rights and Remedies’ (1996) 55 Maryland Law Review 292, 310.

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