The debate surrounding assisted dying has resurfaced in the UK, with Members of Parliament (MPs) recently voting on the issue following an emotional and deeply divisive debate. This article explores the current legislative process and why assisted dying is becoming a political priority and the implications for community nurses, who are directly involved in palliative care.
The position at time of writing
Proposals for new legislation that could change the law about the ending of a patient's life have been under discussion across the UK. In Jersey, the States Assembly approved assisted dying in principle in November 2021, and a draft law is to be debated by the end of 2025 (Jersey Assembly, 2024). In the Isle of Man, there has been a vote to progress an Assisted Dying Bill, which could take effect from 2027 (Sanders and Boyden, 2024). These proposals are in line with laws being considered in Scotland in 2024. In October 2024, a House of Commons Member of Parliament at Westminster, Kim Leadbetter (MP), announced her intention to bring forward an Assisted Dying Bill, and another draft bill was already going through the House of Lords, led by Lord Falconer. On 29 November, 330 MPs voted in favour of moving the Bill to the next stage of the legislative process, while 275 voted against it. The Welsh Senedd had voted against such legislation at the time of writing in November 2024 (BBC, 2024).
The vocabulary used can cause unnecessary confusion. To aid clarity in this discussion, the author will use the expression ‘assisted suicide’ for what is proposed in the bill, even though language of the bill is ‘assisted dying’. Each proposed bill requires the patient to have the capacity to make the decision independently. The individual will have chosen to die and will need to self-administer the means of death at a time of their choosing. Using the term ‘suicide’ distinguishes it from withdrawal of treatment by clinicians or refusal of treatment by the patient that also results in the death of the patient.
The ‘assistance’ at the time of death in some drafts is given by a clinical person, probably a nurse, who brings the prescribed substance to the patient and stays with them until they die or takes it away if the patient changes their mind. This end stage of the process comes after assessments by two doctors who oversee the selection of suitable patients and prescribe the substance, and the pharmacist who dispenses it. The patient is being assisted in ending their own life, rather than the clinicians doing it directly. In other countries, where the clinician performs the tasks leading to the end of life, even if it is with the patient's consent, the process would be classed as euthanasia. It may also be called voluntary euthanasia to emphasise that the patient must agree both in advance and at the time of administration of the fatal substance.
Key issues
One problem for nurses deciding how they feel about this role is lack of clarity. For example, the Scottish draft bill has several clauses where the detail of the process will be decided by Scottish ministers after the bill has been passed (Scottish Parliament, 2004). Whatever the political process, the net effect for nurses is that one may be asked to take a stand for or against the bill without fully knowing what requirements it will make of them professionally. While the idea of agreeing in principle is often discussed, it is unclear what specific principle is being agreed upon. The principle that patients should not die in distress is something that people can agree with easily. However, determining whether a particular law will prevent or allow distress is an entirely different matter, particularly when the details are not fully understood.
Professional organisations have responded to the public consultations on the legislation. The Royal College of Nursing (RCN) in Scotland has registered significant concerns (RCN, 2024). Many professional organisations have taken a neutral position, which means that while they neither agree nor disagree in principle, they have made comments about the implications of the practicalities of the bill. For example, the RCN has asked how nurses will be trained, where the death will take place, how nurses can be excused from taking part and whether it will be just another additional task for the already hard-pressed nurses. A key question is what exactly nurses are being asked to support—whether it is the general principle or the specific details. This can only be decided with clarity of definitions.
The term assisted dying has, in public discourse, applied to the clinical situation where a patient, already dying from natural causes, receives comfort and care and is believed to have passed more quickly as a result of the medication administered. For example, morphine is used to relieve pain and reduce the sensation of shortness of breath towards the end of life with a terminal illness. It is sometimes suggested that sedation and pain relief have a double effect: keeping the patient comfortable while also potentially shortening the dying process as a side effect. This is sometimes interpreted as de facto euthanasia or assisted dying. In the author's view, this is unhelpful and misleading. There is research to demonstrate that morphine does not hasten death when used correctly (Regnard, 2007). The idea that misusing morphine is a common practice gives rise to fear and poor care. Rather than overdosing, there is anecdotal evidence of clinical staff rationing pain relief at the end of life for fear of being accused of taking the patient's life. Education is needed in such scenarios, rather than new legal protections. Properly managed palliative care does not give rise to legal complaints. Assisted suicide is different from care given to a patient who is dying. Furthermore, if people hope that a new law will give legal protection to clinicians who deliberately overuse morphine to accelerate the dying process, the laws as currently drafted would not offer such protection. It is important to be clear that this assistance, which is care given while the patient is dying, is different in intention from, for example, an injection of potassium chloride that has no therapeutic value and is given with the sole intention of causing death.
For a political idea or policy to become law, a proposal is made to the legislative body of the region or country. It could be something in the programme of government that had already been planned. Alternatively, it could be a member's bill. Elected members draw lots for the chance to put forward a bill on an independent idea. The legislation proposed in Scotland at the Holyrood Parliament and in the House of Commons in Westminster for NHS England arose from the member's bills lottery, not the programme for government. It was not planned or called for. This is reflected in polls that show voters' primary concerns are the economy, housing and health provision. Private member's bills work against a tight timescale, which critics suggest is too short a period for such a momentous, arguably uncalled for, change in nursing practice.
The legislation proposed is mainly in framework or skeleton bills, which may allow it to proceed faster through the system of scrutiny. Bills are normally very specific and lay down in detail what they want the law to be. This was discussed in relation to the difficulty nurses might have in working out whether draft bills would be practicable for them professionally. The clauses in this kind of framework legislation are called Henry VIII clauses, named after a monarch who preferred changing the law by proclamation, rather than democratic means. After the passing of a bill, the details are decided afterwards. There is even less scrutiny of the follow-up regulations, as decisions made at that stage are simply laid before Parliament and automatically signed off after a few weeks, unless someone takes the time or effort to object (Tobin, 2022).
Overuse of such a mechanism fails to provide the level of assurance about safeguarding that nurses would require before new extraordinary roles and responsibilities are placed on them. By contrast, for some legislation, for example on building safety, the voting member probably does not need to know specific details of architecture or engineering to agree a legal principle that a building should be safe. The details are technical, such as the proper depth of a foundation or the dimensions of a load-bearing wall. In the case of assisted dying, it can be argued that for a law that allows healthcare workers to oversee the deliberate ending of life, the voting member probably needs more detail because of the ethical issues involved in the finest technical elements of the regulations. These include: whether the nurse can set up an IV; what should be done if the patient does not die as expected; and what is the position of the anyone who holds welfare power of attorney for the patient. In the Scottish bill discussions, one scenario has been put forward that illustrates the puzzles that need to be settled. In that scene, the welfare attorney, the son, arrives at the house unexpectedly and finds the nurse and patient at home after the patient has lost consciousness. What should the nurse do if the attorney, whose power is activated by his mother's loss of consciousness, calls for an ambulance and dismisses the community nurse who was overseeing the patient's end-of-life care? Nurses would want to know their position and the available safeguards. A framework bill may not provide the level of confidence they need.
Law makers who voted for or against the proposed laws arguably do not really know exactly what they are voting on as it has not been detailed and because they have a limited understanding of the current experience of dying, and the powers that patients and attorneys already have but do not use. There is evidence that the more detail legislators have, the less they support new laws in this area. Many people still think that the next of kin have legal rights to decide matters for the patient. People who hold power of attorney may not realise that they can refuse lifesaving treatment on behalf of the patient. Some patients think that if they refuse life-sustaining treatment, such as cardiopulmonary resuscitation or antibiotics, they may also be refused other comforts of palliative care. They believe, without evidence, that a natural death is more likely to be agonising than a medically administered one.
Some technical issues, for example which fatal drug cocktail to use, require regulation. Lawmakers may set a limit on the risk they would tolerate for the failure of any chosen drug cocktail to work (Worthington et al, 2022). The cocktail most commonly used in other countries may have adverse outcomes, such as vomiting and distress, which do not result in death.
There is no suggestion in any of the current legislation about what may be an accepted substance or what to do if there is an adverse outcome. It assumes that this can be covered by subsequent regulation. The Scottish bill would require Scotland to have a distinct variation on the UK regulation of healthcare professions and on the use of medicines, neither of which is guaranteed. It may even be ruled that it is outside the scope of what that the parliament is permitted to decide.
Overseas models
Countries across the world have introduced a variety of methods of accelerating natural death and have seen the rise of unforeseen problems. For example, in Belgium and the Netherlands, controversy has arisen as patients with mental illness and chronic psychological issues have gained access to assisted suicide (Dierickx et al, 2017; van Veen et al, 2022). In Canada, there is concern that patients feel channelled towards assisted suicide because there is insufficient palliative care or social care (Knox and Wagg, 2023). Vague language in some countries can lead to inconsistent application. Switzerland allows assisted suicide but not euthanasia, giving rise to legal ambiguity for health professionals (Hurst and Mauron, 2003). In Australia, the process is complex and there are issues with the practicalities of training professionals and assuring access (Digby et al, 2022).
It has been said that introducing assisted suicide in the UK when the NHS and social care budget is under such pressure would place an incentive on health professionals to encourage some people to end their lives early (Care Not Killing, 2024). The increasing requirement for older people to pay for their own care might place pressure on them to take an early way out to prevent the family resources being drained for their care.
There is evidence from other countries of mission creep, where the laws are being used for individuals who cannot consent or for those who were deliberately excluded from the original legislation for valid reasons. In one example in the Netherlands, a woman who had dementia resisted euthanasia, to which she had previously consented. She did not have capacity to consent on the day of her death but was sedated by the doctor and restrained by her family to complete the process (BBC, 2019). There is evidence from Oregon that assisted dying is statistically used more often for women and people of lower socioeconomic groups (Battin et al, 2007). Neither of these outcomes was anticipated or desired.
Conclusions
The author wants to encourage nurses to think about the practical professional issues that might arise from the specific wording of legislation to support assisted dying and to encourage nurses to engage with the debates in public, and in private, about whether patients and attorneys are aware of the powers they already have and do not use. The author also challenges nurses, who feel they support change in principle, to examine whether the creation of legislation could have unintended negative consequences for the profession by creating unworkable situations in practice.