Tim Dieppe takes a look at what we learned from the government’s assessments of Kim Leadbeater’s bill, published last week.
Impact Assessment highlights uncertainties
The government finally published its impact assessment of Kim Leadbeater’s bill to legalise assisted suicide last week.
Many have commented that the timing of this release looked suspicious, being at 4pm on a Friday just before a bank holiday weekend, and when the media were distracted by the shifting fortunes of the major political parties in the local election results that day.
One has to pity the poor people tasked with drawing up what is a 149-page report on the economic impact of changing the law on assisted suicide. Caveats abound. “N/A” has been filled in for all the total costs and benefits of the bill. Very wide ranges of estimates are provided emphasising the multiple unknowns in implementation of the bill.
For example, reduction of home care profits in year 10 is calculated to be between £143k and £4.61m (p82) – a huge range! Indeed, the word “uncertain” occurs no less than 36 times in the report, and this, together with the wide ranges of estimates, serves to underline the lack of clarity about how this bill would actually operate in practice.
The report acknowledges this on page 3:
“While some monetised impacts have been provided, these are for the most part uncertain with wide ranges attached. The upper bound of these ranges should not be interpreted as maximum values, nor as representative of the full range of potential costs, given there are significant aspects of the Bill that have not been possible to quantify at this stage. Adding only the quantified elements of this IA [impact assessment] together would not give a comprehensive assessment on the net impact of the Bill because significant unquantified impacts would not be accounted for in that net figure.”
This provides the rationale for filling in N/A for all the net costs of the Bill. There is just too much that can’t be quantified at this stage. The report further states:
“Furthermore, while the Bill sets the parameters for a “Voluntary Assisted Dying” (VAD) service, details about how it would work are to be set through secondary legislation. It is therefore not possible to robustly estimate an overall Net Present Value (NPV).”
We get the message. A proper impact assessment just can’t be done, as there are too many details left vague and uncertain. The authors have done their best, but they have been given an impossible task.
Up to 12 people per day
The report estimates that between 1,042 to 4,559 people will have assisted deaths in year 10. This is based on the percentages of deaths in jurisdictions with comparable eligibility criteria for allowing assisted suicide. This could be as many as 12 people per day.
However, before the second reading of her bill, Kim Leadbeater suggested that her bill would result in up to 3% of deaths being by assisted suicide, which would equate to up to 17,000 deaths in England and Wales per year.
The reality is that no one can be sure how many people in England and Wales would use an assisted suicide service. We may speak the same language as people in Oregon or Canada, but our cultures are different, and our population’s uptake for suicide could vary significantly even from these estimates.
Terminally ill ‘may feel pressured’
The report notes a disbenefit on the terminally ill that “they may feel pressured into have an assisted death” [sic] (p35).
It notes that in Oregon, 42% of those requesting assisted suicide cited “burden on family, friends/caregivers” as a contributing factor. It also notes that in some places where assisted suicide is legal, there is a lack of access to palliative care, and states “it is not known the extent to which lack of access to palliative care may influence a person’s decision to have an assisted death.” (p35).
Later, the report notes that according to the Association of Palliative Medicine and Marie Curie, only 50% of those requiring specialist or generalist palliative care in 2021 were estimated to have received it (p80). Lack of available palliative care is very likely to influence a patient’s decision to opt for assisted suicide.
As noted in the report, the bill “does not explicitly confer a role on the applicants relatives and friends”, nor does it “confer a role on any unpaid carer of the applicant.” (p36-37). It notes, with understatement, that the applicant’s decision “would still impact relatives and friends.”
Factual error
One factual error has been spotted in the report.
There is a table of surveys of healthcare professionals on assisted suicide. The report cites the survey of the Royal College of GPs (RCGP) as showing 39% opposed to a change in the law, and 61% neutral. This is in fact the result of the votes on the UK Council of the RCGP which are reported on the front page of the RCGP press release on the subject. The actual votes of the RCGP survey were 47.6% opposed, 13.6% neutral, 33.7% for, and 5.1% unknown.
This is an easy mistake to make, but it does raise questions about the accuracy of other statistics in the report.
Opt outs pose questions for workability
The report notes that high portions of healthcare professionals have indicated that they would not actively participate in the provision of assisted suicide.
The highest rates are in palliative medicine, where 76% said they would not participate, and another 14% were undecided, giving a maximum opt out rate of up to 90% (p51).
Overall opt out rates for healthcare professionals were 47% opposed to participation, with 18% undecided, leaving only 35% willing to participate. This will make provision of assisted suicide difficult to administer.
The report assumes that six healthcare professionals would be required to work for a total of 32 hours to complete the process of facilitating an assisted suicide (p54). This is valuable time taken away from caring for patients. The report warns that:
“Consideration would need to be given to the impact of a high level of opt out on the workability of a national service model (including equity of access), as well as the impact of shifting resources from one area of the health and care system to another.” (p109).
This raises a question about whether facilitating assisted suicide is even workable on the NHS because of the high levels of health professionals who are opposed to participating in it!
If assisted suicide does become available on the NHS, some doctors and nurses may additionally determine that they do not want to work for an institution that provides poison to its patients, even if they are not directly involved.
Questions over substance used to induce death
The report notes that “There is no single substance or combination of substances that is understood to be the most appropriate for assisting death.” (p41).
Further, “The safety and efficacy of those substances used for assisted dying is currently difficult to assess.” It notes that there is evidence of complications such as “regurgitating, seizures, and intravenous line complications.”
It also notes that “some suppliers may not wish to apply for an indication of assisted dying for their product, or that suppliers may wish to restrict the use of their product for the purposes of assisted dying by other means.” (p43).
Financial benefits calculated
It is rather sickening to be considering the financial benefits of facilitating assisted suicide, but this is what this impact assessment tries to do.
It concludes that the reduced costs from unutilised healthcare provision for those who opt for assisted suicide ranges from £5.84m to £59.6m in year 10 (p75).
All of this is set out in detail, stating that: “The estimated cost per person in the last 6 months of life is £16.5k” and that “34% of these costs are incurred in the final month of life.” (p77). Therefore, “Assuming all assisted deaths occur after 2 months, reducing the length of life by 4 months, then it is estimated that 79% of the associated healthcare costs (for months 4 to 1) are no longer required.” (p79).
As everyone suspected, ending lives prematurely will save money for the NHS. How quickly, therefore, will the right to die become the duty to die?
Equality impact assessment
On the same day, the government released its equality impact assessment of Kim Leadbeater’s Bill.
This report aims to assess the impact of legalising assisted suicide on people with various protected characteristics under equality law.
Here we have an explicit statement that people with mental health conditions are not excluded from accessing assisted suicide services. This contradicts what some have been saying about the safeguards in the bill. If this bill passes, we will be enabling some people suffering from mental health issues to end their lives.
Also concerning is the explicit statement that: “a pregnant person who also meets the eligibility criteria in the bill, would not be explicitly excluded from seeking assistance to end their own life.” No concern is raised about ending the life of the baby in the womb at the same time, though the report does suggest that clinicians might conscientiously object to this.
Extraordinarily, when it comes to disability, the assessment focuses on whether disabled people will be able to access assisted suicide. It does not attempt to assess the impact on disabled people of society increasingly thinking that some lives are not worth living.
It does, however, acknowledge pressure felt by disabled people:
“Evidence suggests that disabled people may be more susceptible to feeling as though they are a burden on those around them. Pressure is not necessarily felt or applied by other people – disabled people may feel subtle pressure due to attitudinal barriers or a lack of alternative appropriate services and support (for example, when accessing palliative care).”
But then it just accepts that the safeguards proposed in the bill are adequate, in spite of several amendments to strengthen them being rejected in Committee Stage.
In fact, the committee scrutinising the bill initially refused to meet with representatives of any disability organisation to hear their concerns about the bill.
Human rights analysis
Also on the same day, the government released an ECHR analysis of the bill, considering issues arising from the European Convention on Human Rights. This states that “the government is of the view that the bill is compatible with the ECHR.”
This conflicts with a legal opinion obtained by the Christian Institute and given by Tom Cross KC that Kim Leadbeater’s bill is not compatible with the ECHR. In his opinion, together with that of Ruth Kennedy KC, the bill, “without justification, contains no adequate safeguard protecting the position of those with disabilities where suicidal ideation is more likely, and who are, because of that feature of their disability, more likely to express a clear and settled wish to die”.
They stated: “In our opinion, this failure to treat these different cases differently in the enjoyment of the right to life is in breach of the ECHR.” They suggested that an application for judicial review could be brought if the legislation was enacted to obtain a Declaration of Incompatibility with the Human Rights Act 1998.
The government recognises that there are issues when it comes to Article 2 of the ECHR – the right to life. However, it argues that that the European Court of Human Rights (ECtHR) has allowed other countries to legalise assisted suicide and given a wide margin of appreciation to states on this matter. It states: “The government recognises that robust safeguards will be essential to ensure compliance with the state’s positive obligation under article 2.”
However, it accepts that the safeguards proposed are adequate. Chillingly the report states:
“The government further notes that article 2 does not require there to be a right of appeal from the decision of the panel.”
Once the ‘death panel’, which will very likely comprise volunteer members who are in principle supportive of assisted suicide, approves someone for assisted suicide, there is no right to appeal.
This is considered not to be a problem in meeting human rights obligations. In the rather unlikely event of one of these panels refusing to approve an assisted suicide, the patient can appeal the decision. This one-way appeal process is very chilling, and implies that they would rather reconsider a decision to preserve life than a decision to end one.
Family members – no right to be informed
There is no provision in the bill to ensure that family members are informed of their relative’s decision to apply for assisted suicide. They could well only find out about this after their relative has died.
Chillingly, the report states:
“The government considers that the right to access information in the context of death of a family member is adequately protected by the robust deaths certification and registration requirements of the bill, both in relation to deaths as a whole under existing legislation, and in specific relation to assisted deaths under the bill, including the requirement for the cause of death to be recorded as ‘assisted death’ where regulations are made applying existing legislation.”
Your right to information about a close family member wanting assisted suicide is therefore satisfied by being informed about his or her death!
Freedom of conscience – no opt out for institutions
In discussing article 9 – the right to freedom of thought, conscience and religion – the report considers that the opt outs available for individuals will ensure that the bill meets these obligations.
There is no consideration of the fact that there are no opt out provisions for hospices or care homes which will be forced to facilitate assisted suicide against their religious convictions.
Conclusion
For anyone with ears to hear, there are serious problems with this bill. The high portions of healthcare workers who will not want to be involved in the process of facilitating assisted suicide will make it very difficult to provide equally on the NHS. While provision of palliative care is not universally available, the bill will somewhat perversely ensure that provision of assisted suicide is universally available.
As we all suspected, there is a claimed cost benefit to the NHS of prematurely ending lives. Who can say this won’t be in the mind of a doctor who is allowed to raise the subject with a patient without the patient having expressed any interest? Family members can’t interfere, and may only be informed once the patient has died. This is shocking and dystopian.
These reports show that there are many problems and many uncertainties about how this bill would actually work in practice. One has to hope and pray that MPs will now recognise these problems and decide that they should vote to kill the bill.
