'Safety' v autonomy

Kim Leadbeater MP has taken assisted dying legislation, via her private member’s bill, through second reading in the Commons and to the conclusion of its committee stage. It is a feat achieved, in the original bill and through amendments, by focusing on the legislation’s ‘safeguards’, and setting out relatively narrow eligibility criteria for those seeking assistance with a voluntary death. She also reluctantly proposed an increase in the timeline to implementation of the bill if passed from two to four years, as a result of changes made to the bill. A 25 April Commons vote has been postponed to 16 May.

The result in the current draft of the bill is a process with multiple stages, the involvement of many professionals and numerous checks on an individual’s ‘settled will’. For a terminally ill adult who is seeking an assisted death, the steps appear daunting. Among supporters of the legislation are those who worry that the idea of a humane process that supports the principle of autonomy around death has been compromised to answer the bill’s critics.

Equally, those who oppose the legislation and have campaigned against it are unmoved by the form its safeguards have taken.

Eligibility unchanged

The scope of eligibility for an assisted death emerged unscathed from its committee stage. It still applies to:

‘A terminally ill person in England or Wales who—

(a) has the capacity to make a decision to end their own life.

(b) is aged 18 or over at the time the person makes a first declaration.

(c) is ordinarily resident in England and Wales and has been so resident for at least 12 months ending with the date of the first declaration, and

(d) [who] is registered as a patient with a general medical practice in England or Wales, may, on request, be provided in England or Wales with assistance to end their own life…’

There must be a ‘reasonable expectation’ that the person has fewer than six months to live. The role of doctors in making an assessment is closely laid out, and someone applying for assistance must affirm their settled wish multiple times.

No day in court

When the original bill was published, a central safeguard was the need for an application to be ruled on by a High Court judge. It would have been the role of the judge to review the opinions of two doctors who had determined the eligibility of the person who had applied, including an assessment that they had not been coerced. Judicial oversight, the bill’s supporters argued, was a safeguard beyond the standard set by other jurisdictions with an assisted dying regime.

That provision has now been replaced with a determination by a panel appointed with ‘judicial oversight’. This has been an uncomfortable pivot for both supporters and opponents of assisted dying. Opponents, centred on the campaign group Care Not Killing, went from arguing that the High Court’s involvement was not a real safeguard, to stating it was ‘extremely troubled’ by the loss of the ‘important so-called High Court safeguard’. Chief executive Dr Gordon Macdonald said: ‘It is risible to claim that this massively watered down, and opaque replacement will be safer.’

The bill’s sponsors were also discomfited by the change appearing to be a response to concerns that the backlog in the courts, and underfunding of the justice system, drove the committee to find an alternative.

Melinda Giles, Law Society Council member for private client and a partner at Giles Wilson, says: ‘In no other jurisdiction that allows voluntary assisted dying is there a requirement to obtain court agreement. Yet we started with this provision, and have now moved away, not because there is no longer considered to be a need for legal oversight, but because of cost and practicality [factors that were] obvious from the beginning. There remains the problem that our legal system cannot keep up with court and legal decisions due entirely to a lack of funding. This new proposal still does not address the issue as to who will pay to access the system.’

The panel will include a ‘senior lawyer’. ‘How is that going to be defined?’ Giles asks. ‘Will they be specifically accredited? I hope so.’

The involvement of a lawyer with appropriate training and experience is important because of concerns relating to capacity and the vulnerability of the terminally ill person who is seeking assistance, Giles believes. ‘As a solicitor who has dealt with financial and other abuse of the vulnerable, I see a person diagnosed with a terminal illness as a vulnerable person,’ she says. ‘They will always require the objective and personalised support of a solicitor specifically trained to understand these nuances.

‘One example of this is that the bill refers to the potential pressure or coercion upon the dying person, but we should also consider the internal emotional pressure for that person aware that they are an emotional and costly burden for those around them. My father was diagnosed and died of terminal cancer. He was adamant from the outset that he did not want to hang around. He made me promise to support that in the knowledge that other family members would wish to prolong his existence. Autonomy shows in different ways.’

There is an ongoing debate about whether legislation can cope with concerns about capacity and coercion. Wedlake Bell consultant Ann Stanyer says: ‘Specific legal issues as to the implementation are unresolved at present. In particular, how issues of mental capacity and coercion or pressure are to be dealt with properly.’

She is concerned by the way capacity was framed by the chief medical officer for England, professor Chris Whitty. Whitty had commented in evidence to the bill committee on ‘the ease with which medical practitioners assess capacity on a day-to-day basis’. Stanyer notes: ‘Certainly, the legal profession’s experience of requesting mental capacity assessments from GPs would suggest this is not the case.’

The principle of relying on a panel is viewed positively by some. It has a resemblance to the Australian regime. In common with the state of Oregon in the US, it has not seen a ‘slippery slope’ to cover an ever-wider range of scenarios where an assisted death is legally available.

Louise Lewis, partner and national head of trusts, estates and tax at Freeths, argues: ‘The revised bill will create a system which is better fit for purpose. Having a panel of experts will allow for better safeguarding to ensure there is no undue influence placed on individuals who wish to make a decision about how they want to end their lives. Additionally, the bill provides that the individual must confirm their decision at every stage and allows them to stop the process at any time. This will ensure that the decision to end one’s life is not taken lightly and that their voice is heard.’

Private member’s bill

'MPs will be debating and voting on 16 May for a bill which may seek to redirect precious funding from hospices and other palliative care services which are poorly funded'

Ann Stanyer, Wedlake Bell

Allowing adequate parliamentary time for a private member’s bill to be the legislative vehicle, should it succeed, has allowed overdue consideration for a topic that successive governments have resisted addressing properly. The division of the pro- and anti- MPs has been genuinely cross-party. MPs from both groups reportedly worked collaboratively at committee stage.

But there have been unsatisfactory aspects. Stanyer argues the bill ‘has shown how inadequate and unfit is the private member’s bill process in considering such an important change in our law.

‘There is inevitably a lack of parliamentary time for considering any private member’s bill and in this case only three days of oral evidence. In addition, the 444 pieces of written evidence provided to the committee must mean that so many of the arguments have not been heard.’

Also under fire is the consequent way in which resource considerations have been handled. As Stanyer notes: ‘The lack of both an impact assessment and costs estimate, at present, means that MPs will be debating and voting on 16 May for a bill which may seek to redirect precious funding from hospices and other palliative care services which are poorly funded.’

Narrow application

Elsewhere, there is frustration among supporters at what is not in the bill.

There was wide public and political sympathy for Tony Nicklinson, who became paralysed from the neck down after a stroke and had locked-in syndrome. Nicklinson wanted to end his life, legally and with assistance, as he was unable to physically achieve this himself.

He lost his 2012 High Court case and then refused food until he died. His case went posthumously to the Supreme Court, in 2014, where it also failed. It was, the court decided in his and other cases, for parliament to determine the law here, though the courts have stressed that the pressure for a court to rule would exist if parliament did not give the matter full consideration.

Nicklinson, though, would not have had his wish to die assisted by the current bill. As drafted, the assistance available is of the provision and means being made available to a person to take their own life, otherwise unaided. Further, while Nicklinson’s suffering, settled will and capacity were not in doubt, he could not have been ‘reasonably expected’ to die within six months.

Given the bill’s narrow scope, there are two relatively common scenarios which remain unresolved. The first is the position of a person who goes with a relative or friend to the Dignitas Clinic in Switzerland. This will still happen if the Leadbeater bill becomes law. The police would still interview them on their return, and the Crown Prosecution Service could still decide to prosecute for the ‘assistance’ given.

Second, there is the scenario where a relative or friend assists in a suicide or ‘mercy killing’ in England and Wales. The CPS has published guidelines on such cases. In 2010 it clarified when a prosecution would meet the ‘public interest’ test. In 2023, it published guidance on ‘mercy killings’ and ‘failed suicide pacts’.

The law on assisting a suicide, which can carry a 14-year prison sentence, was introduced in 1961, when suicide ceased to be a criminal act.  

Michelmores partner Alexa Payet identifies further problems: ‘At present, and notwithstanding the success or otherwise of the bill, families of loved ones who die by assisted suicide risk losing everything by virtue of the potential engagement of the Suicide Act 1961 and Forfeiture Act 1982.

‘The legal and financial consequences of an assisted death will remain a considerable pressure for many who do not meet the statutory criteria but are living with incurable and intolerable suffering. This will extend to those who may be eligible in the future but currently face difficult choices while the bill finishes its parliamentary journey and, if successful, await the now-extended four-year implementation period.’

Next steps

Leadbeater’s bill now goes to report stage before being sent to the Lords. Given the long wait for parliamentary time on the matter, the observation that this legislation is a ‘once-in-a-generation opportunity’ seems accurate.

Jurisdictions with laws allowing for assisted deaths have tended to continue with the regime put in place. In Canada, the Netherlands and Belgium, laws which were driven by court judgments or by wide definitions have seen more scenarios in which assisted death is allowed. Tightly drawn legislation, such as that in Australia and Oregon, has remained narrow in scope, and in that sense they resemble Leadbeater’s bill.

It could be dubbed ‘the cancer bill’, because of its restrictions. And it is striking that whatever path is followed, some groups have in a sense been unfairly played off against one another, or required to accept very difficult compromises.

To stand a chance of legislation succeeding, people in a similar position to Nicklinson have found that their scenario and settled wishes are not covered by the ‘once-in-a-generation opportunity’. People will still go to Dignitas, a setting where the safeguards regarding coercion and capacity are weaker than envisaged in the Leadbeater bill, and where the fallout for family is worse.

Discussions on resourcing have engaged fears for palliative care and the health service budgets. Dwindling justice system resources may have also derailed some of the proposed legislation’s ‘safety’.

But perhaps it is significant that a way through has been found in another part of the British Isles. Crown dependency the Isle of Man has passed legislation, now awaiting royal assent. This allows for life expectancy of less than 12 months as a qualifying factor (double the requirement in Leadbeater’s bill), residency of five years, availability only to people over 18, with legal capacity verified by two doctors.