Terminal Sedation: Time for legislative change?

How should the law respond when terminally ill patients are suffering indeterminable, intractable pain at the very final stages of their lives?

In England and Wales, the law in relation to the end-of-life has several aspects which may appear, at best, to be opaque if not simply incoherent. Indeed, the law holds several evident contradictions, or graver still, contortions of language and common logic. When some of the most vulnerable within our society are at the very ends of their lives, being terminally ill with intractable pain, anxiety or restlessness, their Professional Palliative Carers may not, or may not feel able to ease their suffering by using the therapeutic option of Terminal Sedation.

Several decades ago, suicide or ‘self-murder’ was decriminalised, although assisting others to end their lives remains a statutory offence under section 2 of the Suicide Act 1961. The law requires proof of the requisite mens rea, with the necessary proof of intention and foresight of the actor concerned. As a nation state, we uphold the European Convention on Human Rights and the right not to be subjected to inhumane and degrading treatment and hold expressly to the moral principle of the sanctity of life. The law also distinguishes between acts and omissions in ascertaining culpability in end-of-life cases.

However, in England, notwithstanding statute, precedence and principles, patients die every day suffering intractable pain, ‘total pain’ despite the very best efforts of palliative care professionals and medical science. As a society we do not permit anyone to be assisted to commit suicide whether at home, or elsewhere. Although the Director of Public Prosecutions does not prosecute relatives routinely (despite, or as a result of published guidance) those who return after assisting or accompanying a loved one who travels to another jurisdiction in order to access assisted suicide. Nevertheless, those who support such travel, or accompany their loved-ones, continue to risk prosecution when they, ‘the assisting person’ returns home.

Indeed, it may appear perverse for a state that does not fully protect the terminally ill from dying in total pain, for the Secretary of State for Health and Social Care, in November 2020 (during the Covid-19 global pandemic travel restrictions) to confirm that it would be lawful for the terminally ill to travel to another jurisdiction for the purpose of accessing assistance to die. The State which does not allow assisted suicide effectively carved out an exemption from pandemic travel restrictions to access an assisted death that would be unlawful on English soil.

Despite continued protestations of judicial respect for the sanctity of life, there are many cases where Courts have ruled that life can indeed be brought to an end. These cases have included patients who were not dying imminently, and even where evidence suggests that the patient would like to have their lives prolonged. Furthermore, and in apparent contravention of the ‘acts versus omissions’ doctrine, removal of life support invariably entails an act of some description, even though the law considers this to be an omission. When life-support is withdrawn by physically removing, or turning off a ventilator, the law considers this to be a withdrawal. How should the law therefore respond in order to ensure clarity?

The aim and hypothesis of this research is ambitious in its scope. It aims to explore the grounds for, and test the support for, primary legislation for the legal and ethical legitimacy of Terminal Sedation (a term for which there is no universally agreed definition) in the context of end-of-life care. Terminal Sedation would be available only for terminally ill patients suffering intractable symptoms and indeterminate pain. For the purposes of this thesis, Terminal Sedation means the act of permanently sedating the patient whilst simultaneously ceasing all other medication, fluids and nutrition with the intension of allowing death.

The objectives of the research are to: • Undertake empirical qualitative research to explore the concept of Terminal Sedation from the perspectives and personal experiences of relatives and friends who have lost loved ones through terminal illness (many suffering from intolerable pain), palliative care professionals and legal professionals. Following this, research interviews will be carried out with policy professionals to ascertain their views;

• Extrapolate narrative data, evolving themes and position arguments emerging from the empirical data collected to highlight current issues with the law;

• Develop an argument from the findings of the research to ascertain whether there is support for new Primary Legislation within England & Wales with a distinct framework that is separate from euthanasia (and other forms of assisted dying); and

• Propose a draft Terminal Sedation Bill for debate, consideration and critique, to facilitate law reform to reduce the potential for terminally ill patients dying in intractable and indeterminable pain.

The research and its outcomes, including some unexpected findings, are presented and evaluated. In the interests of transparency, all transcripts from the focus groups and interviews have been transcribed and provided in full, to allow peer scrutiny. The findings are stark. The personal testimonies are honest, frank, heartfelt and at times, simply harrowing to hear.

This research did not at the outset, nor in its conclusions, seek to consider or advocate for or against assisted dying or euthanasia. Indeed, the debate over the respect for life versus the respect for autonomy may in part be responsible for the impotence of our current legal framework that pertains to the control of pain at the very end-of-life, given the continuing debates and challenges brought by pressure groups and others in the assisted dying debate. In this thesis I seek to evaluate the arguments that pertain to a change in the law to ensure that, where necessary, terminally ill patients can be assured that their death will be pain free, while not jeopardising protection of the vulnerable or being a slippery slope for legalisation of assisted dying more widely.

A proposed Terminal Sedation Bill has been drafted in full, to offer a potential defence against criminal charges due to necessity, to undertake an intervention between competing evils to safeguard the best interests of the patient who lacks capacity, and the autonomy of the competent patient who gives their valid consent. The Terminal Sedation Bill, as drafted, is not proposed for all terminally ill patients who suffer pain, nor is it a single universal pathway for all patients in pain. The focus here, is for a specific cohort of patients and subject to their informed and autonomous choice. The proposed Act would provide a defence to clinicians against risk of prosecution only in very specific circumstances. It is not intended to legislate to assist dying, aid a potentially slippery slope or be a prescribed route for any wider patient group.

The defence afforded through the draft Terminal Sedation Bill, is that of necessity. Unless the patient has previously indicated their wish to experience suffering, or for non-administration of pain relief, it is only the defence of necessity that permits the best interests of the patient to be realised through the intentional deliberate act of sedation and the intentional negative-act of non-administration of artificial nutrition, hydration and drug medication, other than sedation; both of which are undertaken in the full and absolute foresight and intention of non-continuation of life, to remove pain.

There is already a precedent for an Act of Parliament that provides a defence against what would otherwise amount to a crime. The Abortion Act 1967 did not decriminalised abortion. Instead, it provides a defence for doctors who carry out an abortion in compliance with its provisions in certain circumstances. In similar vein, the Terminal Sedation Bill (if enacted) would not make Terminal Sedation legal. The Bill, as proposed, would merely encourage greater transparency of the use of terminal sedation as a medical modality to ease suffering at the end-of-life caused by intractable pain. It would provide a defence for doctors who comply with its provisions against prosecution.

Counterintuitively perhaps, for those who might oppose such a legal statute, a Terminal Sedation Bill if adopted might increase the lifespan of some who are terminally ill, if it would persuade those considering travelling to other jurisdictions to end their life, not to travel. Part of the aspiration behind legislative change is to encourage life to be lived with reduced fear for those who are terminally ill. It should also allow the law and the Courts to be honest and clear in their rulings and for our society to accept dying through Terminal Sedation, (not to accept fear or pain in death), and to discuss as a mature legally solid society, the end-of-life as a reality and embrace the opportunity of assurance of the option of dying, being free of pain, with dignity and surrounded by loved ones within England and Wales. This is in stark contrast to dying with intractable pain and suffering, or dying prematurely abroad whilst able to travel, without those you love close by, or even dying painlessly having spent the final period of life with a reduced quality-of-life, due to the worry of pain that may accompany terminal conditions, even if this pain does not ultimately arise. Nevertheless, there are alternative views which will be evaluated and explored further.

On numerous occasions, Parliament has been called upon to legislate on end-of-life matters; ‘…it seems to me imperative that the moral, social and legal issues raised by this case [Bland] should be considered by Parliament. The judges' function in this area should be to apply the principles upon which society, through the democratic process, adopts, not to impose their standards on society. If Parliament fails to act, then judge made law, will of necessity through a gradual and uncertain process, provide a legal answer to each new question as it arises. But in my judgment that is not the best way to proceed.

Whilst the judgment was in relation to one case which centred upon a patient in a permanent vegetative state, 29 years later this omission of Parliament continues. A Terminal Sedation Bill is advanced as a potential resolution to one of the key aspects of end-of-life medical treatment where Parliament resists changing the law. Such an Act may not only provide assistance for the terminally ill patient but may also, if the current legal position places those who care for our terminally ill who are in intractable pain, anxiety or restlessness, in a position of being legally at risk for their actions, whether actual risk or perceived, and may be a route to ensure that they are protected against liability or regulatory sanctions. Indeed, as there is a ‘public appetite for complaining and litigiousness’ action which is now a feature of healthcare and for health professionals having a defence in terms of a care pathway where the patient will die, potentially earlier than if there had been no intervention, may be advantageous to the palliative care professional.