Terminally Ill Adults (End of Life) Bill

Professor Nancy Preston, Professor of the International Observatory on End of Life Care, Lancaster University; and Professor Suzanne Ost, Law School, Lancaster University (TIAB45)

Evidence to the Public Committee on the Terminally Ill Adults (End of Life) Bill

Executive summary

Informed by interviews with health care professionals and bereaved family members and their first-hand accounts of assisted death experiences, we set out important challenges and potential solutions below, presenting the following key recommendations for the Terminally Ill Adults (End of Life) Bill:

Key recommendations

a. Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill (Clauses 3, 7-9) .

b. Establish an official body to provide initial information about AD and the AD process for those seeking an assisted death (Clause 4).

c. Consider an alternative model delivered outside of the health care system, that provides support to help patients and families (including bereavement support) navigate the AD process and involves an AD Panel of experts to identify volunteer medical professionals, scrutinise and approve the process before death and review after death (Clauses 5 and 32).

d. To ensure consistency in the assessments, a definition of coercion and pressure is required. Training on detecting coercion/pressure needs to be devised and required under the Bill or must be set out in a Code of Practice (Clauses 7 , 8, 12 and 30 ).

e. Consider alternatives to a court-approved model such as an AD Panel to prospectively review and approve ( Clause 12 ).

f. Consider whether evidence from the person should be required in all applications to the Approving Body (as would be required from the doctors who make the assessments under the Bill) to ensure consistency and certainty (Clause 12) and consider allowing appeals when the Approving Body makes a declaration to approve an application of AD (Clause 12).

1. Capacity

Clause 3: Capacity , Clause 7: First doctor’s assessment, Clause 8: Second doctor’s assessment , Clause 9: Doctors’ assessments

1.1 The Bill would only apply to adults with capacity (Clause 3) and the doctors’ assessments require the scrutiny of capacity (Clauses 7, 8, 9(3), 12(3)). However, it is unclear how this scrutiny will fit with existing legislative provisions, since the Mental Capacity Act 2005 includes the presumption of capacity for anyone aged 16 or over (s.1(2)). The scrutiny of capacity in the Bill would seem to challenge this presumption.

1.2 Recommendation: Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.

2. The provision of initial information about AD and the AD process

Clause 4: Initial discussions with registered medical practitioners

2.1 Clause 4 will offer reassurance to medical practitioners that there is no duty to raise AD with a patient. However, whilst it is stated that nothing ‘prevents a registered medical practitioner exercising their professional judgement to decide if, and when, it is appropriate to discuss’ AD, medical pr actitioner s may be reluctant to enter into initial AD discussions for fear of the risk of being perceived to influence a patient .

2.2 It may also be difficult for a registered medical practitioner who is unwilling or unable to conduct the preliminary discussion to identify another registered medical practitioner whom they believe is willing to have the discussion, if requested by the person to do so ( Clause 4.5 ) (see also next paragraph). P atients may thus seek information about AD and receive misinformation from less reputable sources. Thus , there should be an official body (an AD P anel under ou r proposal – see Annex 1 ) ‘t o provide factual information to patients about the full range of options available to them, so that they can make informed decisions ’ . [1] This AD Panel would need publicly promoting.

2. 3 Recommendation: Establish an official body (an AD Panel) to provide in itial in formation about AD and the AD process to those seeking an assisted death.

3. Involvement of medical practitioners, support for persons requesting an assisted death and their families

Clause 7: First doctor’s assessment, Clause 8: Second doctor’s assessment, Clause 9: Doctors’ assessments, Clause 10: Another independent doctor (second opinion), Clause 11: Replacing the coordinating doctor on death etc , Clause 18: Provision of assistance

3.1 Under Clauses 7-11 and 18, registered medical practitioners are also those who would conduct the necessary assessments and then provide assistance. But internationally, most doctors do not want to be directly involved in AD even if they agree with a change in the law. Experience from other jurisdictions [2] demonstrates that it can be difficult to find a doctor willing to assess or assist, as often this still largely seen as a relatively taboo act with fear of opposition from colleagues. In part this is due to the impact on doctors. Even when they are willing, our research shows that the magnitude of the act of assisting stays with them: ‘For me, it really takes a year before I get over it and think: "Ok, now I’m ready for a new trajectory."’ [3]

3.2 Apart from finding enough doctors, it will be challenging to find enough time for doctors to assess, prescribe, appear in court, and deliver medications. Even more time will be required to remain with patients until they die (Clause 18.9). Over 30% of Oregon cases took over an hour to die and 7% exceeded 6 hours. [4] In Switzerland, some use an IV and patients ‘self-administer’ by opening the port which is quicker, but still likely to take a prolonged period of time.

3.3 With few doctors willing to participate, integrating AD into the NHS would pose significant challenges, including finding enough doctors to assist. In our view, the Committee should consider a list of volunteer health professionals trained in palliative care options and AD. These volunteers could be identified by an AD Panel when an application for an assisted death is submitted in an alternative model outside the NHS, such as that we have proposed (see Annex 1).

3.4 Throughout the assessments, it is unclear how people seeking an AD will navigate the process and be supported. Our research shows it is imperative that there is guidance and support through the AD process and bereavement support for families after an assisted death occurs. [5]

3.5 Recommendation: An AD Panel could identify medical and palliative care professionals to conduct the assessments, including a requisite palliative care assessment. If the AD Panel subsequently approves the application, it could identify volunteer doctors to prescribe and be present at the administration, and a pharmacist who is willing to dispense the medication.

3.6 Recommendation: Consider an alternative model outside of the health care system that could involve right to die organisations to help support patients and families through the AD process and identify bereavement support.

4. Coercion or pressure

Clause 7: First doctor’s assessment, Clause 8: Second doctor’s assessment and Clause 12: court approval

4.1 The assessments under Clauses 7 and 8 require, inter alia, the assessing doctors to be satisfied on the eligibility criteria first stated in Clause 1(2)(b) that the person has not been coerced or pressured into their decision to apply for an assisted death. The High Court must also be satisfied of this under Clause 12(3)(h). There are real challenges in uncovering and identifying coercion and pressure, especially because such behaviour is often part of a concealed process over a period of time. [6] Tools exist [7] that could be used to help detect coercion and undue influence [8] reflecting factors related to the person’s vulnerability, such as those identified in, e.g., California’s Welfare and Institutions Code, [9] and as proposed in our research. [10]

4.2 Recommendation: To ensure consistency in the assessments, a definition of coercion and pressure is needed. Training on detecting coercion/pressure needs to be devised and required under the Bill or set out in a Code of Practice (see Clause 3 0 below).

5. Court-approved model, evidence from the person, no appeal against a declaration

Clause 12: Court approval , Clause 13: Confirmation of request for assistance: second declaration

5.1 Clause 12 sets out the need for High Court approval of AD applications by way of a declaration that all the requirements have been met. But real concerns exist about the appropriateness of this role for a judge and the costs and delay [11] that would be involved, given existing strains on the justice system.

5.2 Clause 12(6) states that whilst the High Court must hear evidence from the assessing doctors, it may receive evidence from the person applying for AD. Whilst this offers the courts flexibility, it also means that evidence from the person may be considered in some cases, but not others. This could have ramifications in terms of ensuring consistency as to whether evidence from the person is needed by the High Court to confirm eligibility for approval (such as that the person has a clear, settled and informed wish to end their own life and that they have not been coerced or pressured), thereby also creating uncertainty as to when such evidence will be required.

5.3 Clause 12(11) states that there would be no possibility of an appeal when the High Court makes a declaration. This closes the door to any involved party who considers that there has been an error in a High Court decision.

5.4 Recommendation: Consider whether evidence from the person should be required in all applications to the Approving Body (as would be required from the doctors who make the assessments under the Bill) to ensure consistency and certainty.

5.5 Recommendation: Consider alternatives to a judge-approved model such as the model we propose involving an AD Panel to prospectively review and approve (Annex 1), looking to other examples of prospective review and approval such as the Voluntary Assisted Dying Review Board in Victoria, or the Registrar in New Zealand.

5.6 Recommendation: Consider allowing appeals when the Approving Body makes a declaration to approve an AD application.

6. Code of Practice on coercion or pressure

Clause 30: Codes of Practice

6.1 If a definition of coercion and pressure is not provided and training on such is not required in the Bill for the assessing doctors and High Court judges, direct consideration of these matters would be required in a Code of Practice under Clause 30.

6.2 Recommendation: Consider requiring a Code of Practice on detecting coercion and pressure and stipulating the training required.

7. Assisted dying and the health care system

Clause 32: Provision through NHS

7.1 Clause 32 of the Bill states the powers of the Secretary of State to provide regulations on the provision of AD and that they ‘may, in particular, enable the provision of such assistance as part of the health service’. Our concern is the real risk that placing AD within the NHS will communicate the wrong symbolic message when the majority of palliative care is provided through charities. There is also the serious challenge of additional costs to an already struggling NHS and a resource issue for doctors.

7.2 Recommendation: Consider an alternative system outside of the health care system.​ [12]  To enable equality of access, this model could include funding from charities/right to die organisations where needed.

13 January 2025

Annex 1: AD Model Outside of the Health Care System Flowchart

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[1] BMA, The BMA’s views on legislation on physician-assisted dying, para 5, visited 8 January 2025.

[2] Marcus Sellars, Ben P. White, Patsy Yates & Lindy Willmott, ‘Medical practitioners’ views and experiences of being involved in assisted dying in Victoria, Australia: A qualitative interview study among participating doctors’ (2022) 292 Social Science & Medicine 114568.

[3] Nancy Preston and Jane Lowers, ‘Assisted dying: first-hand accounts of what it’s like to help a loved one die’ 23 July 2024.

[4] Oregon Health Authority, Oregon Death with Dignity Act 2023 Data Summary 20 March 2024.

[5] Preston and Lowers, above n.3.

[6] Mary Joy Quinn, Lisa Nerenberg, Adria E. Navarro & Kathleen H. Wilber, ‘Developing an undue influence screening tool for Adult Protective Services’, (2017) 29 Journal of Elder Abuse & Neglect 157.

[7] Quinn et al, above n.6.

[8] See the Supreme Court of Canada case, Geffen v. Goodman Estate [1991] 2 SCR 353: ‘when one speaks of "influence" one is really referring to the ability of one person to dominate the will of another, whether through manipulation, coercion, or outright but subtle abuse of power… To dominate the will of another simply means to exercise a persuasive influence over him or her.’ (Wilson J, at 377).

[9] California’s Welfare and Institutions Code, § 15610.70.

[10] Suzanne Ost and Hazel Biggs, Exploitation, Ethics and Law : Violating the Ethos of the Doctor-Patient Relationship (Routledge: 2022), 189-195.

[11] Sir James Munby, Assisted Dying: What role for the Judge? Some further thoughts, 14 November 2024.

[12] Nancy Preston, Sheila Payne and Suzanne Ost, ‘Breaching the stalemate on assisted dying’ (2023) 382 BMJ 1968.