By Tim Spencer-Lane
On 11 November 2024, the Terminally Ill Adults (End of Life) Bill was published. This bill makes provision for a person who is terminally ill and meets the eligibility criteria to choose to request and lawfully be provided with assistance to end their own life.
This will be of particular interest for social workers who work with people who have a terminal illness or practise in specialist palliative care settings.
This is a private member’s bill, introduced by the Labour MP Kim Leadbetter. The government has confirmed it will “remain neutral on the passage of the bill and on the matter of assisted dying”. MPs, including government ministers, will therefore have a free vote on whether to support the bill at its second reading, which involves a debate on its principles.
The House of Commons has not voted on the issue since September 2015.
The legal framework for assisted dying
The Suicide Act 1961 makes it an offence for a person to do an act capable of encouraging or assisting the suicide or attempted suicide of another person. A person guilty of this offence is liable to imprisonment for a term of up to 14 years.
The European Court of Human Rights recognises that states have a “wide margin of appreciation” when it comes to the lawfulness of assisted dying. For example, since 1942, assisted suicide has been lawful in Switzerland, which is also a signatory to the European Convention on Human Rights (ECHR).
But to be compatible with the ECHR, assisted dying must be accompanied by suitable and sufficient safeguards to prevent abuse and ensure that the person’s decision to end their life fully reflects their free will.
Who would be eligible for assisted dying?
Under the bill, there are four criteria that must be met before a terminally ill person can be assisted to end their own life. The person must:
- have capacity “to make a decision to end their own life” (with capacity to be determined in accordance with the Mental Capacity Act 2005);
- be aged 18 or over;
- be ordinarily resident in England and Wales, and have been ordinarily resident there for at least 12 months, and
- be registered as a patient with a GP practice in England or Wales.
A person is “terminally ill” if they have an inevitably progressive illness, disease or medical condition that cannot be reversed by treatment. The person must also reasonably be expected to die within six months.
A person must not be regarded as terminally ill merely by reason of them having a mental disorder, under the Mental Health Act 1983, or a disability, within the meaning of the Equality Act 2010.
The bill also requires that steps to be taken to ensure that the person has a clear, settled and informed wish to end their own life. They must also have made the decision voluntarily and have not been coerced or pressured by any other person in making that decision.
What will the process be?
The process of seeking assisted dying consists of three stages:
- The person makes a “first declaration” (and two medical statements are provided).
- The approval of the court.
- The person makes a “second declaration” (and a medical statement is provided).
The first declaration
At the first stage, the person must make a declaration confirming a number of specified matters, including that they are “eligible” for assisted dying and understand they can cancel the declaration at any time.
This is known as the “first declaration” and must be signed by the person themselves and witnessed by the “co-ordinating doctor” and another independent person. The “co-ordinating doctor” is a registered medical practitioner who meets certain requirements and is willing to carry out the functions under the bill in relation to the person.
The co-ordinating doctor is also required to assess the person and confirm a number of matters, including that the person has the requisite capacity and has not been subject to coercion or third-party pressure.
They must also refer the person for a second assessment by another registered medical practitioner (referred to in the bill as “the independent doctor”). There is a period of at least seven days (“the first period of reflection”) between the first and second assessments.
Approval of the court
At the second stage (ie once the person has made a first declaration and the two medical statements have been made), the person may apply to the High Court for approval of assisted dying. This would require the court to make a declaration that the requirements of the bill have been met in relation to the first declaration.
If the High Court refuses to make the declaration, the person can appeal to the Court of the Appeal. The Court of Appeal can confirm the decision of the High Court or make the declaration. There is no appeal against a decision of the High Court to make the declaration.
The second declaration
At the third stage, if the person still wishes to be provided with assistance to end their own life, they must then make a further declaration (referred to as “the second declaration”).
There must be a period of at least 14 days (“the second period for reflection”) between the court declaration and the person making the second declaration (or if the person is expected to die within one month of the court declaration, a period of at least 48 hours).
The second declaration must be witnessed by the co-ordinating doctor and by an independent witness. The co-ordinating doctor must sign a statement confirming certain matters and that must be witnessed by the same independent witness as witnessed the second declaration.
How would assisted dying be provided?
The bill sets out that in order to administer assisted dying, an “approved substance” must be provided directly, and in person, by the co-ordinating doctor. Approved substances are not defined in the bill but will be specified in regulations.
The co-ordinating doctor may prepare that substance for self-administration by that person, prepare a medical device that will enable that person to self-administer the substance, and assist that person to ingest or otherwise self-administer the substance.
The bill sets out that the decision to self-administer the approved substance and the final act of doing so must be taken by the person themselves, not by the co-ordinating doctor.
The co-ordinating doctor may authorise another named registered medical practitioner to exercise the co-ordinating doctor’s functions in connection with the provision of assistance to a person.
What about healthcare professionals who don’t want to offer assisted dying?
The bill sets out that no doctor is under a duty to raise the subject of the provision of assistance under the bill with a patient. Where a patient indicates to a doctor that they wish to seek assistance to end their own life in accordance with the bill, the doctor may (but is not required to) discuss the matter with the patient.
Clause 23 explains that no registered medical practitioner or other health professional is required to participate in the provision of assistance under the bill. Also, an employee cannot be discriminated against because they choose not to participate in the provision of assistance under the bill or because they choose not to participate in the provision of that assistance.
What are the protections against legal liability for providing assistance?
The bill sets out that a person is not guilty of an offence by virtue of providing assistance in accordance with the bill.
The Suicide Act 1961 is, accordingly, amended to ensure that the provision of assistance to a person in accordance with the bill is not an act which constitutes an offence under section 2 of that act (criminal liability for complicity in another person’s suicide).
The offence under section 2 of the Suicide Act 1961 will continue to operate for other cases where assistance is provided. But the amendment to that act also provides a defence to a charge under section 2 of the Suicide Act 1961 where the person proves that they:
- reasonably believed they were acting in accordance with the bill, and
- took all reasonable precautions and exercised all due diligence to avoid the commission of the offence.
The bill also sets out that providing assistance to a person to end their own life in accordance with the bill does not give rise to any civil liability.
What new criminal offences are created?
The bill creates a number of new criminal offences, including the following:
- where dishonesty, coercion or pressure is used to induce a person to make (or not to cancel) a first or second declaration, or self-administer an approved substance;
- to make or knowingly use a false first or second declaration, or willingly destroy one;
- to knowingly or recklessly provide a medical or other professional opinion which is false or misleading;
- to wilfully ignore or otherwise conceal knowledge of a cancellation of a first or second declaration.
Other matters
The bill provides that the duty to investigate a death under the Coroners and Justice Act 2009 does not arise just because the person died as a consequence of the provision of assistance in accordance with the bill.
The secretary of state is required to issue codes of practice in relation to the bill, such as on the assessment of whether a person has a clear and settled intention to end their own life and the assistance which a person may be given to ingest or self-administer an approved substance.
The chief medical officers for England and Wales are required to, separately, provide guidance relating to the operation of the bill. In particular, they must have regard to the need to provide practical and accessible information, advice and guidance to persons considering requesting assistance under the bill, their families, and the general public.
The secretary of state is also given powers to secure that arrangements are in place for assistance to be provided in accordance with the bill, including arrangements for the funding of any provision made. This would enable the secretary of state to provide for services to be provided through the health service or by a separate service.
The secretary of state is also required to review the operation of the bill. The review must take place at least five, but not more than six, years after the passing of the bill. The report of the review must be laid before Parliament.
Tim Spencer-Lane is a lawyer specialising in adult social care, mental capacity and mental health and legal editor of Community Care Inform.
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It is about time.
Working in CHC the majority of my clients are deemed Fast track. It is Still a difficult call as many are still alive at 12 weeks post referral , 70% + have dementia, and there for would not be able to take this course action.
Even if,the wanted to.
20%+ elderly and rest are dealing cancer and mnd or similar. Parkinson
The elderly and cancer clients are a few who have broach this subject .
In four years I had 4, to 6 people who have said they would if the could..
The guidelines are clear. And people have to fulfil the criteria.
And only then people can promote there choice.
So I agree with this being a option, for those who want it.
We are a society predicated on the principle of autonomous choice which is enshrined in medical ethics. The law supports these principles. To deny someone the choice when death is a greater attraction than life is a denial of these principles. To distract from that personal choice by saying it devalues people is a power issue and denies control to people to whom life is worse than death. As long as safeguards are in place ( and there are plenty of examples worldwide) only the fear of death by people who do not wish to allow qualifying patients that choice is really the only bar to this law.
I understand this if suffering is great and there’s no option to alleviate symptoms however focus should be on alleviating symptoms so the person doesn’t suffer. It may be for some but may be dangerous. Danger of medical mistakes. Danger of members of family pressing a person that they don’t want to take care of or their suffering is hard on them. I’m afraid it could contribute to possibility for further development of law where life of terminally or seriously ill people including children could be decided by person responsible for them even when they want to live. It may be right for some but somehow it feels like slippery slope.
Unfortunately symptoms cannot always be alleviated. My father suffered pain, which was never controlled, and mental distress as a result of mixed progressive dementia. During his lucid moments he begged me, his carers and his GP to help him die as he was in such mental turmoil and pain. This continued for 10 months until his horrud death. The memory of his suffering and begging will haunt me till the end of my days.
will life insurance companies class assisted dying as suicide.
With Judges involved and delays involved with such Courts, I can’t see anybody ever being granted this in an appropriate timeframe to ‘self administer’ anything. I find it fascinating that it is OK for health professional to administer the 4 Core Drugs which hastens death when they consider it the ‘right time’ but individuals can’t choose themselves when it’s the right time! Also Wes Streeting needs to shut up and butt out!
You only have to look at Canada- people are being offered assisted dying because they are poor, or have disabilities that can be aided by simple adaptations.
If social workers really cared about alleviating the suffering of people they would actually do the real work rather than made in to uphold what they think is a moral high ground. People whose lives would be terminated under the current health and legal frameworks have no autonomy so would not be making decisions without external pressures. To truly give people the choice they would need to have GPs who truly know them. GPs who’ve seen them over many years and who knows their real medical history over time. In a system where getting an appointment is rare the chances of having a consistent GP who not only knows your medical history but also knows your circumstances and how you live your life, in other words knows you as a person as well as a patient, does not exist. Making decisions on seeing only ‘today’ by professionals who have no relationship with people is not informed let alone safe. Nor first it give the power to end life to people themselves. Social workers are good at pronouncing on headlines, they should be more interested in the substance of issues if they are to have opinions to be respected. I am from a Dutch background, I have family who live in the Netherlands so I happen to have been part of this conversation for many years. In the Netherlands there is very high anxiety about the narrative around ‘assisted’ dying being people centered when there have been many recorded instances of what turned out to be coercive pressure on people. And that’s in a country where the health and social care systems would shock UK social workers with it’s resources and paper checks and balances. Health care is politicised, social care is politicised there as it’s in the UK except it’s more subtle. In an environment of toxic debates about pensions, immigration, housing, benefit claimants and the like ‘assisted’ dying decisions are highly unlikely to be effected by those. If you really cared you’d criticise the back door ‘assisted’ dying that already exists with no involvement or choice by people. MHRA and NiCe daily ration availability of drugs or refuse to approve them on cost and “prolonging” life criteria every day. I’ve never heard a social worker talk about how people are suffering and are denied treatment on those grounds. If you can’t get newly developed medicines because they are thought to be too expensive to be made available and if you don’t get them because they would “only prolong life for 6 months” so aren’t “cost effective” that’s assisted dying. If a doctor without discussion with you or your family increases the dosage of your “pain relief” medication knowing it will end the life of an 80 year old, that’s ‘assisted’ dying. Talk about these before feeling you are on the right side of history by endorsing even more control over people’s lives by professionals who see cost and bed blocking before they see the person. If a social worker visits a person twice in 4 years and then decides they know all they need to know about them I’d imagine most of their colleagues and I would hope at least their supervisor would not accept it on faith. Yet that is the real health service today. If care homes have no proper independent oversight, and they don’t, how confident are you as social workers doing a fleeting visit that when staff tell you a person has deteriorated they aren’t making that judgement because they think the person is demanding too much time from their more than likely depleted workforce? If you want “assisted dying” with proper safeguards and true power in the hands of people themselves advocate seriously that professionals can prove they really do know the person. Otherwise we are back at that all encompassing get out for professionals of “informed consent” and “capacity to consent” aren’t we?
Your examples of ‘assisted dying’ do not meet the proposed legal criteria for assisted dying. You are talking about decisions made by by others to shorten someone’s life, usually without even requiring the person’s consent.
Any case where the person has been found to have mental capacity to make the decision themself (by 2 doctors s.12 qualified, not a SW, of a person’s decision for an assisted death, at a time of their own choosing) has to then be scrutinised and agreed by the High Court. Personally, I think that sounds reasonable. A judge would only be looking at the objective facts set out in terms of the prognosis for the person’s life expectancy and likely deterioration, the documented capacity assessments and their own consultation with the person. It would be far more objective than someone who knows them well might be. However, knowing how long deprivation of liberty cases take to get a COP hearing, I do think it is unlikely that many cases would ever get to the High Court in time.
This bill is utterly irresponsible. As social workers we must first address the unmet needs of any individual who has a life limiting condition by expanding palliative care to all. Palliative Care is a human right and yet instead of this government exploring ways of ensuring this, a bill by the rich that starts off for the rich is introduced. First it starts with the wealthy who can afford this legal process but then what? It’s a slippery slope. Do we put down our unwanted people just like sadly people put down their unwanted pets? Why is there no palliative care for all? This country invented palliative care social work. Dame Cicely Saunders would be very disappointed to see how matters have devolved in this country. Shameful and this website in particular has failed to offer a fair and balanced approach to this bill. It’s almost as if it is pushing the matter.
It is very simple, making it legal doesn’t make it right, another one in the eye for humanity, where does this lead us?, when will it stop? basically giving lawyers and politicians the right to say who lives and who dies, wow, this is scary, again power, money and Rupert Murdoch win.