Terminally Ill Adults (End of Life) Bill

Written evidence submitted by the Bios Centre (TIAB49)

Summary

(1) The Bill is vague on how eligibility will be determined e.g. how pressure is to be excluded by doctors who may be previously unknown to the patient.

(2) Waiting periods are short and there is no requirement the patient be suffering, have made use of palliative care options or be unable to receive treatment for any pain or distress they may have.

(3) The Bill allows the proactive raising of the topic of assisted dying and also the proactive advertisement of assisted dying services to those not actively seeking assisted dying.

(4) Doctors with doubts about competence are not required to seek psychiatric advice.

(5) The Bill encourages doctor-shopping and there is no clear pathway for GPs, carers or family to raise concerns with the Court.

(6) There is no right to appeal if the Court grants (as opposed to refusing) a declaration .

(7) Proxy consent is included, which is risky.

(8) Conscientious objection provisions, including for institutions, are inadequate.

Introduction

The Bios Centre is a London-based bioethics institute and is a charitable company. The majority of Centre researchers are based in the UK, while two of our researchers are based in Australia. Bios researchers come from various professional/academic backgrounds: philosophy, law, medicine and medical research. Our research interests are wide-ranging but include end of life care and assisted suicide and euthanasia (assisted dying).

The current submission concerns details of the Terminally Ill Adults (End of Life) Bill; for a more general submission on assisted dying, see the Bios Centre’s evidence to the Health and Social Care Committee Inquiry on Assisted dying/assisted suicide.

Concerns with the Bill

Specific concerns we have with the Terminally Ill Adults (End of Life) Bill include the following:

(1) The Bill is vague on how eligibility will be determined. A prognosis of months left to live is notoriously difficult for doctors to make, and there is no obligation in the Bill for the coordinating doctor to consult with a specialist in the patient’s medical condition.

(2) It is also unclear how the coordinating doctor and the independent doctor, who may be previously unknown to the patient, are expected to determine that the patient has a settled wish to die and is not under any pressure to do so.

(3) The waiting periods prescribed are short and the second period may be shortened still further if death is believed to be imminent, leaving a situation of great stress where little time may be taken for reflection, despite the gravity of the decision and the existence of alternatives.

(4) There is no requirement that the patient be suffering, have made use of palliative care options or be unable to receive treatment for any suffering they may have. A patient who merely fears suffering and is sceptical about the reach of palliative care and feeling overwhelmed by a recent prognosis they have not had time to process may still be able to persuade doctors (especially doctors unknown to them) that they have a settled wish to die.

(5) The Bill allows a doctor to raise proactively the possibility of assisted dying. For a person in a position of authority to do this may give a strong – even if unintended – impression that this is the recommended option, at a time when the patient is very vulnerable and may be pessimistic about the extent of help available to manage their condition. Even if the doctor is required by the Bill to discuss palliative care, the very fact that assisted dying is brought up proactively, as the Bill allows (Section 4 (2)), may suggest to the patient that palliative care may not be able to deal with symptoms such as pain or other distress (for example, the patient may be unaware of the option of palliative sedation even to the point of deep sedation if pain is otherwise refractory to treatment).

(6) Just as a doctor should not, in our view, proactively raise the topic of assisted dying, we recommend that there be provisions in the Bill to prohibit the proactive advertising of assisted dying services e.g. via posters and internet publicity. By ‘proactive advertising’ we mean advertising directed to those (or partly to those) who are not actively looking for such services and who may in some cases be depressed or even suicidal without wanting such services offered to them. Paid boosting of assisted dying sites should also be prohibited.  Even in the case of government websites or physical facilities as opposed to the websites/facilities of external providers or advisors, these should not publicise assisted dying services to those who have not demonstrated an interest in them but have merely searched for/tried to access end of life care. This is important not only for terminally ill people but for wider society: legalising assisted dying in a number of legislatures has been associated with a rise in non-assisted suicide (‘suicide contagion’ or the so-called Werther effect).

(7) The Bill refers in Section 3 to the Mental Capacity Act, according to which a patient is assumed to be competent unless shown otherwise. In the Bill, the doctor ‘may’ (3 (b)) contact a psychiatrist if there are doubts about competence, but is not required to do so. It is important that in cases of doubt such contact be made mandatory: such doubts should be acted upon, not ignored at the doctor’s discretion.

(8) In any event, a competent patient may still be under subtle or not-so-subtle pressure from people or circumstances to choose assisted dying. The chances of e.g. the coordinating doctor picking up such pressure may be minimal, especially if this doctor – who will probably be a GP – was previously unknown to the patient and was chosen as less likely than the previous GP to raise concerns. Requiring the patient to be registered with his/her current GP practice for a certain period (say, 6 months) to be eligible to apply for assisted dying would do something to address this issue of ‘doctor shopping’ – which, however, remains a concern.

(9) The Bill encourages doctor-shopping not only in relation to the coordinating doctor but in relation to the independent doctor, whose refusal may be passed over in favour of a second opinion. The independent doctor who refuses to make the statement mentioned in Section 8 (5) should at least be invited by the Court to give evidence, rather than the bare fact of his or her refusal being simply recorded.

(10) In general, there are few opportunities in the Bill for a doctor such as a GP or recent GP who is not involved in the assisted dying process to raise concerns. According to Section 9 ( 2 , e) the coordinating doctor should ‘advise’ the p atient to tell their GP th at they are looking for assistance to die . We believe the coordinating doctor should be required not just to give the GP (and, we would say, the previous GP, if the current GP is of less than 3 months standing ) notice of the making of a declaration or statement (as at Section 16 (2 )) but actually to consult with the GP (or previous GP , bearing in mind that the patient may have changed GPs recently and/or the new GP may be the coordinating doctor ). That way , any concerns the GP /previous GP may have – for example, about lack of competence and/or family pressure – can be addressed and recorded in the medical notes .

(11) Moreover, there needs to be a clear and easy path way for a GP /previous GP with concerns to take these further i.e. to the Chief Medical Officer (CMO) but also to the Court . We recommend that there be a requirement for the Court to give notice of the patient’s application to the GP (or previous GP if the current GP is the coordinating doct or and/or of less than 3 months standing ) and provide a clear process for them to give evidence to the Court if they wish to .

(12) Similarly, the Court is not currently required to hear from other witnesses, such as family members, who may have highly relevant information for the Court to consider. There needs to be a built-in method for concerned third parties – whether family members or carers – to challenge a declaration, given that their knowledge of the patient and his/her circumstances (lack of capacity and/or fluctuating desire for assisted dying and/or pressure from some particular family member or other influencer) may far exceed any knowledge of the coordinating or independent doctor . To enable such an intervention , family members need to be aware of declarations and applications made . The coordinating doctor should be required to advise the current next of kin (and, if this is a different person, the person who was next of kin up to 3 months previously) of an intention to make a first or second declaration . T he C ourt should also advise the current next of kin (and, if this is a different person, the person who was next of kin up to 3 months previously) that an application is being considered and invite them to give evidence. ( We recommend that a recent as well as the current next of kin also be informed since a controlling relative who is pressuring the patient to choose assisted dying may also pressure t he patient to make them next of kin. )

(13) In the current version of the Bill, there is no right to appeal if the Court grants (as opposed to refusing) a declaration. This is unacceptab le, given how little may be known by th e Court and coordinating doct or and independent doctor about the patient’s true state of mind and situation. A t a minimum, it should be no less possible to challenge the granting of a declaration as to challenge its refusal, given that the former allows the patient and others further time for reflection tha t would otherwise be denied.

(14) We are alarmed by the provision for proxy consent in Section 15 . Th is section allow s a proxy who m the patient has known for 2 years – or alternatively, who is a person ‘of good standing in the community’ – t o sign o n behalf of a person who cannot sign him/herself , and who is perhaps unable to speak as well. The possibility of being a proxy as described would seem to apply to a n 18-year old neighbour with little knowledge of the patient or skill in interpreting their wishes . It would also seem to apply to an assisted dying campaigner whom the patient has never previously met and who is known to be willing to act as a proxy in such circumstances. We recommend that Section 15 be deleted.

(15) Conscientious objection is inadequately protected in the Bill, w here ‘participating in the provision of assistance’ ( Section 23) may be narrowly understoo d, bearing in mind that Section 18 on ‘Provision of assistance’ concerns the actual provision of/help to administer the approved substance. There is no mention of the conscience rights of independent doctors , pharmacists or indeed judges. Doctors who do not wish to discuss assisted dying with patients are required to refer to those willing to do so. Moreover, even doctors who are happy to discuss assisted dying with patients (or patients who raise the question themselves) may find themselves professionally and/ or morally uncomfortable with a level of involvement with the assisted dying process that employers or regulators may come to expect. F or example, the doctor may be expected to give the patient a form – or sign a form themselves – which kickstarts the assisted dying process in some way . There is no protection in the Bill against such pressure: those doctors who currently discuss suicidal feelings with their patients as part of their normal work should not feel they need to ‘back away’ from doing so in the case of assisted dying or else follow a tightly-controlled script.

(16) The Bill needs conscience protection s not just for individuals but for instituti ons such as hospices and care homes . Section 23 (2), f or example, is not reassuring on that front: t here should be no attempt to force hospices and care homes t o retain as employees doctors who facilitate assisted dying , any more than e.g . a faith school is forced to ignore questions of ethos in their employment decisions . Hospices, care homes and other institutions have the right to create ‘safe space s ’ for patients, many of whom will welcome the fact that assisted dying will not be facilitated in what may be their last place of residence.

21 January 2025