I appreciate that not everybody will want to know my extensive thoughts on the Terminally Ill Adults (End of Life) Bill but given the personal importance of this vote to so many people, I thought it was important to explain to everybody why I have come to the conclusions that I have to-date, and provide context for any further votes. You can jump to the end if you so choose…
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It’s 17:20 on Thursday as I start to write this note. I’ve been putting it off for days, partly because I’ve still been listening to colleagues and reading different perspectives; and partly because I’ve been waiting for a moment of clarity about whether supporting Kim Leadbetter’s bill on assisted dying is or isn’t the right thing to do for our society.
In reality, I’ve known for a while that this moment of clarity is unlikely to come because there are such strong and highly personal arguments on both sides of the debate. You aren’t human if you don’t feel the tears of elderly men and women as they sit in front of you, describing the last wonderful – or painful – moments of a loved one’s life, and instinctively want to support their perspective. It has been an honour to listen to and read all your heartfelt accounts.
I’ve thought about this vote almost every morning and every night since it was announced. I’ve listened to lots of different podcasts while driving and attended various events in parliament. I’ve met constituents one-to-one and in groups. I’ve chatted to MPs with various views. I’ve tried to be as open-minded as possible.
And in this unique debate, I’ve (unhelpfully!) come to the conclusion that it’s actually possible to sympathise with both sides of the debate because they aren’t, in fact, mutually exclusive. For example, you can both support choice at the end of life and be genuinely concerned about the operational impacts on the NHS and about the consequences for vulnerable and/or disabled people. For most of us, how you vote ultimately depends on where you place the biggest emphasis.
So let me share some of the most important arguments that I have been considering. I’ll do this in bullet point form for ease of consumption. And I fully acknowledge that there are 100s of other perspectives that haven’t made my list.
KEY REASONS TO SUPPORT THIS BILL:
• My starting position has been that the current law is being broken several times a year, but this isn’t resulting in prosecutions. In this context, parliament needs to reaffirm its position. The law subsequently needs to be enforced appropriately.
• The public appears to be in favour of assisted dying, no matter how the question is phrased. Choice and control are important to people, and the likelihood is that a significant percentage of people who secure assisted dying consent won’t end-up using it. For many, it is a form of reassurance only to be used if pain and suffering become too much when dying.
• There isn’t any evidence to suggest that palliative care will get worse if assisted dying is introduced. In fact, other jurisdictions would suggest that palliative care may improve as a safeguarding measure.
• Under the terms of this Bill, medics appear to be free to decide about whether to take part in any new assisted dying processes which I welcome on behalf of the profession. (That said, I retain some minor concerns about how a small GP practice would navigate this issue if there weren’t doctors willing to provide information on the assisted dying services described in the Bill).
• While there are some notable issues with the Bill, I think Kim Leadbetter has tried to draft something that is purposefully tight in order to make it acceptable to parliament and society as a whole. This is something that I genuinely respect and have considered at length as part of my deliberations – if this Bill doesn’t pass, what will?
KEY REASONS TO VOTE AGAINST THIS BILL:
• Clause 2 (1) b refers to “the person’s death … [should] reasonably be expected within 6 months”. It will be impossible for doctors to get ‘six months to live’ right on every single occasion which may, therefore, result in people choosing to die earlier than they need to. I think this risk is ultimately accepted by anyone who chooses this treatment route, but they will likely place a great deal of weight on the medical diagnoses they’ve received from doctors. This will impact how the profession considers sharing terminal diagnoses moving forwards.
• I think most people agree that palliative and social care are underfunded and, in some areas, underperforming, resulting in a postcode lottery. Is assisted dying still a choice if your choice is between assisted dying and inadequate care? In the last parliament, the Health and Social Care Committee found the provision of palliative care to be “patchy” and called on the government to “ensure universal coverage of palliative and end of life services, including hospice care at home”.This hasn’t happened yet (hospices receive 1/3 of their funding from government with the rest funded by hospices themselves).
- The proposed process – two appointments with doctors followed by a High Court process and further sign-offs – will undeniably present significant operational challenges for both the medical and judicial professions based on their current capacities.
- We’d all like to think that obvious cases of coercion can be identified but, in reality, coercion won’t always be clear. Coercion could, for example, have been internalised by the individual but substantiate itself as an apparent “clear, settled and informed wish” for an assisted death (Clause 1 (2) a). Training for medics is referenced in three places in the draft Bill but there isn’t any detail about the level of this. Can a doctor ever be trained to an appropriate level to identify subtle coercion? How long would this level of training actually take? And is a doctor the only person that should be involved? As one paper I read puts it, “the Court of Protection (the court with oversight of the Mental Capacity Act 2005) is clear that capacity is not a purely medical matter, and that it routinely draws upon expertise from other professionals, including psychologists and social workers … [meaning] there is no obvious reason why it should always be seen as a primarily medical matter”. I don’t think this Bill has clear answers at this point in time about how it will practically identify and limit the influence of coercion – the theory sounds plausible but the reality needs deeper thinking.
SOME OF THE KEY UNKNOWNS / GENERAL POINTS TO STILL BE CONSIDERED:
Legal / procedural matters:
A list of terminal conditions hasn’t been specifically defined in the Bill. This potentially leaves room for legal challenge, so there could be efforts to define more clearly what is and isn’t considered ‘terminal’.
On a related note, if someone refuses treatment that could genuinely prolong life, do they – as a result – become ‘terminal’ and, if so, would they be eligible for assisted dying? I apologise if I’ve missed something on this in the Bill.
There is no clear position in the Bill on the reality of people feeling like they’re ‘a burden’ to others or the NHS as they near death, and subsequently seeking assisted dying. This is different to coercion because you can genuinely want to die quickly to allow family members to ‘move on’. Are we comfortable as a society with this? I don’t think the Bill is clear about whether this would be an acceptable reason for assisted dying or not, and I think it would be helpful for the courts if the Bill considers this further as part of any subsequent stages. For what it’s worth, I think there’s no choice but for this to become an acceptable reason – in which case, the law should clarify this.
Under clause 9 (3) a, if a doctor has a doubt about the terminal illness status of a patient, they must refer the individual to a relevant specialist; but under clause 9 (3) a, if a doctor has a doubt about the capacity of someone to make a decision, they may refer them to a suitable professional. This feels to me like a tacit acknowledgment that capacity is potentially too complex to assess properly at speed … yet as stated above, we are expecting ordinary doctors – with a limited level of training – to perform this role in most cases. This concerns me. There are also no stated timeframes for specialist referrals which, in the case of someone seeking to die within a matter of months, could prove problematic.
It is worth considering the requirement to use the High Court if only one side is represented (the patient and their doctors, without an alternative perspective for the judge to consider). This seems unusual. And is it right, as a point of legal principle, that there wouldn’t be an appeal route for the final High Court ruling (clause 12 (11))?
There is no clarity about what happens in the event that “the procedure fails” (clause 22 (1) b). This is very important for the doctor involved – what steps should or shouldn’t be taken, lawfully, in the event of problems?
Systemic / approach considerations:
Through this Bill, we’re likely to be introducing a complicated service for somewhere between 3,000 and 5,000 people per year (at around 1% of deaths which is the percentage of people using assisted dying in Oregon). Per service user, because of the safeguards involved, the costs may prove very high. More details would be helpful on this to contextualise the likely cost of assisted dying. I acknowledge that, overall, there could be savings due to reduced care needs.
Who is paying for what, exactly? GP time, High Court applications, legal aid, drugs etc.? Is this a fully state-funded service like with general NHS treatment, or will there be costs to the service user? And, if so, is this acceptable or does cost preclude people from accessing the service?
It isn’t clear to me yet how assisted dying would ultimately be delivered as a service. Clause 32 appears to indicate “provision through NHS” but this could still mean a range of things. I personally can’t imagine this type of treatment being offered on a standard hospital ward next to other patients; but in some circumstances, it may be the only option depending on the individual’s health. More detail is needed to be able to fully appraise the operational impact of introducing assisted dying.
CONCLUSIONS
If you’ve made it this far, I hope that my thoughts are perceived as logical, clear, balanced and rooted in the things I have heard, read and observed over the past few weeks.
As things stand, as a result of the list of items referenced above, I’m unable to fully support the Bill in its current form. I genuinely don’t want to close down the debate which I think is important – and for many days, I was intending to support the Bill at this stage. But I have come to the conclusion that it would be dishonest of me to vote for something of this significance at this point without a clear intention to support the Bill if it returns to the Commons for a Third Reading ‘as-is’, without any changes. This has ultimately been the decisive factor in how I have decided to vote.
To secure my support at a Third Reading, the Bill’s provisions around coercion detection and its approach to ‘being a burden’ would need further bolstering so there is less ambiguity; and practically, I would require more information on the likely shape, costs and impact of delivering an assisted dying service, alongside a level of certainty about future palliative and social care investment to ensure assisted dying is part of a holistic and consistent end-of-life offer.
I know there will be thousands of Rushcliffe people disappointed with the way that I vote today including many people I care about and instinctively want to support given their genuine and well-meaning beliefs on this topic. I remain sympathetic to them and I’m sorry to let them down. I have agonised and shed tears over this decision, as I’m sure some constituents will do as a result of it.
Above all, therefore, I hope that it is clear from this note how I have tried to approach this matter fairly and objectively. And I will continue to do so in order to produce the very best law, irrespective of the outcome of the Second Reading vote.
