news and comment

committee stage takeaways

The Leadbeater Bill is going forward after a flawed and ineffective scrutiny process

see full story at cmf.li/4lgErsZ

Susan Marriott is CMF Head of Public Policy, a GP, and a student of theology.

The committee reviewing the Terminally Ill Adults (End of Life) Bill [1] has finished its line-by-line review. Nearly 600 amendments were submitted, but most were rejected. Of those accepted, most came from the bill sponsor (about 100), while block voting (from most committee members already in favour of the Bill) meant that only around 30, mostly minor, changes were accepted from those who had voted against it.

It isn’t possible to succinctly summarise all the discussions, but here are three notable takeaways:

1: judge out, panel in

The most significant change is the removal of the High Court Judge’s sign-off in favour of a new commission and panel structure. We have several concerns. [2]

judge out = impartiality lost

A judicial step would have upheld a publicly accountable and impartial application of the law with judicial transparency and powers, including taking evidence under oath and the right of appeal. This and the loss of the monitoring role of the Chief Medical Officer mean the implementation and monitoring have passed to the new commission, which is now essentially monitoring itself.

panel in = wrong time, wrong place, wrong question

The panel contains professionals capable of offering a psychosocial assessment but they are deployed at the wrong time (at the end of the assessment process), in the wrong place (only needing to ‘hear from’ the patient over the phone rather than asking questions of the patient or their family in-person) and being asked the wrong question (only being asked to check up on previous capacity assessments and criteria checking). The Royal College of Psychiatrists has explicitly stated that the Mental Capacity Act is ‘not sufficient for the purposes of the bill’. [3]

2. the Bill is broader than advertised

Eligibility is not limited to the imminently dying or those with intractable symptoms. Patients could shop around different doctors to find two who agree their death ‘can reasonably be expected within six months’ (Clause 2(1)b). It’s not a very high bar. Furthermore, no evidence of physical suffering is required, and there is no requirement for a specialist palliative care assessment or treatment. Thus, feeling a burden, financial worries, feeling low, or lack of local services would be perfectly legitimate reasons to end your life under this Bill.

3. the Bill lacks crucial details

If it is passed, a lot will need to be worked out by regulations and codes of conduct, which is why the Government have asked for an unprecedented four years to work out the details before the legislation comes into force. MPs will be voting on trust on these matters, and the Bill’s sponsors are painting a picture of what regulations might include while offering no guarantees. It’s important to look at the Bill itself. MPs must vote on that rather than on wishful thinking about future regulations. Here are some unanswered questions:

who is delivering this?

Would a private company be commissioned to provide these services outside the NHS and for profit? Would the services sit within the NHS? If the service is delivered within the NHS, where will it happen? Will it share the current funding for palliative care? Kit Malthouse MP even implied (twice) that hospices refusing to offer assisted suicide should lose their funding. [4, 5] We have written elsewhere about the committee’s rejection of institutional opt-out within the Bill. [6]

which doctors are involved?

The Bill simply does not require experience level or a pre-existing clinical relationship to the patient. One concern is that we end up with full-time ‘death doctors’, such as we see in Canada, with little broader experience. Alternatively, more senior doctors could deputise Foundation Year doctors to oversee the suicide. The Bill does not specify any of this.

What of the training for these doctors? Again, there is no stipulation – could it end up being a half-day, e-learning course? We have no idea.

which drugs will be used?

‘The Secretary of State must, by regulations, specify one or more drugs or other substances for the purposes of this Act’ (Clause 25(1)). MPs may imagine that there is a list of ‘substances’ known to provide side-effect-free, painless deaths that the Secretary of State will choose from. This is not the case, and they should be made aware of the unwanted effects, such as vomiting, seizures, and prolonged time to death, that we know to occur in other countries. [7]

is this a medical treatment?

The BMA’s view is that assisted dying is not a ‘treatment option’, [8] but the Bill lacks clarity on this point, despite Danny Kruger MP pushing the Bill sponsor at length over this point.

We could say much more, but these three points alone are causes for significant concern. Our previous analysis remains relevant and available. [9] Please consider reading the Bill and continuing to raise concerns with your MP so that they are well informed about the substance and implications of what they are being asked to vote for or against at third reading.  ›

bag babies?

Is there a danger of new technologies denying the joy of children?

see full story at cmf.li/4l4BprG

Trevor Stammers is a retired GP and a former lecturer, course director, and editor in bioethics.

Just as children conceived through IVF became known colloquially as ‘test-tube babies’, the work being carried out by scientists to create artificial wombs has been dubbed by a recent item in The Times as a quest to grow a ‘baby in a bag’. [1]

The piece didn’t really contain anything new, except to say that only Generation Z (the under-25s) gave much public support for the idea, and even that was only at 42 per cent – hardly a ringing endorsement! It did, however, draw attention to the continuing advance of research into ectogestation (the growing of fetuses outside their mother’s womb for the latter part of their development) and ectogenesis (where conception and gestation take place entirely outside the womb).

In 2017, Partridge et al. showed ‘extreme premature foetal lambs can be consistently supported in an extracorporeal device for up to 4 weeks without apparent physiologic derangement or organ failure.’ [2] No mention is made of any behavioural effects on those lambs. However, there is plenty of evidence that the in-utero environment has a powerful effect on both the psychological and physiological development of human children. This being so, it will be vital to study in detail the impact of ectogestation on any children born using it. In principle, however, ectogestation can be viewed as an extension of existing neonatal care. It could be lifesaving for some extremely premature infants whose lives currently cannot be saved. Parents would surely be glad of this option for a precious, premature child.

What, then, of the possibility of ectogenesis? If, theoretically, the necessary physiological environment could be offered for the whole span of pregnancy, should this be considered desirable by parents? What certainly cannot be replicated is the effect on the mother of the presence of the growing child within her in terms of both the control the mother has over the external influences to which the child is subjected and the bonding with the child during pregnancy, well before birth. In fact, ectogenesis would render all the current NHS advice on the importance of antenatal bonding to pregnant mothers completely redundant.

In the Bible, the antenatal response felt by Elizabeth as her unborn son (John the Baptist) reacted physically to the presence of Mary’s unborn Christ in her womb (Luke 1:41), indicates, at the very least, that mothers will miss out on a very important, indeed, very spiritual element of bonding with their child if the baby is in a bag for its entire gestation.

In any case, ectogenesis, at least in the minds of some of its more passionate advocates, has a very different focus from the child’s wellbeing and the mother’s bonding. It is a political issue about women’s equality rather than a child-centred concern. I once witnessed on BBC’s ‘Big Questions’, a bioethicist proclaiming that ectogenesis was an essential element for women’s equality to rid them of the burdens of pregnancy and childbirth. Should it become possible, Rodgers et al rightly note, ‘Ectogenesis is a natural extension of ART [Artificial Reproductive Technology] services, and the considerable funds that are currently directed towards paying surrogates can potentially be subsumed into the revenues of ART providers.’ [3] Childbirth is sometimes framed as only a painful experience to be avoided if at all possible. Ectogenesis offers to remove the ‘burdens’ of both pregnancy and childbirth. Some feminists see ectogenesis as an essential step to bring about sexual equality in reproduction.

Yet, perhaps pregnancy and childbirth provide better things than ‘reproductive equality’? The cycle of birth and death is universal in human experience, and birth is a very important biblical theme. The concept of birth is an essential prerequisite to understanding being ‘born again’, without which we cannot see the kingdom of God. (John 3:3) Perhaps even more pertinent is Jesus’ observation that, though childbirth is painful for the mother at the time, ‘when her baby is born she forgets the anguish because of her joy that a child is born into the world.’ (John 16:21) Growing a baby in a bag might offer to obviate the pain of labour (and the ‘burden’ of pregnancy), but might it also remove some of the corresponding joy?