Terminally Ill Adults (End of Life) Bill

  Written evidence submitted by Living and Dying Well (LDW) (TIAB51)

Summary

The key issues raised by Living and Dying Well (LDW) concerning this Bill include:

1. Prognostic Uncertainty: Reliance on a six-month life expectancy threshold is unreliable, with evidence showing significant inaccuracies in prognoses, particularly in patients with multiple comorbidities or fluctuating conditions.

2. Mental Capacity and Vulnerability: A specific assessment of capacity should be specified in the Bill as the Mental Capacity Act 2005 (MCA) requires a presumption of capacity as a first step. The MCA does not provide mechanisms to detect coercion. No psychiatric evaluation is required by the Bill despite the effect of illness and medication on decision-making.

3. Systemic Bias Toward Assisted Dying: The Bill frames death as a treatment option, normalising assisted dying without requiring any evidence of attempts to relieve suffering, Nor does it require adequate palliative care and NHS services to be available to ensure the patient has true choices.

4. Lethal Substances and Procedural Failures: The Bill does not state how complications during or failure of assisted dying are to be managed, despite evidence from other jurisdictions of prolonged deaths and drug failures. This leaves the doctor particularly vulnerable.

5. Conscientious Objection: Protections for healthcare professionals are limited and have not accounted for non-clinical staff or other patients who may be deeply adversely affected by an assisted death.

6. Funding and Palliative Care: Assisted dying budgets in other jurisdicitions have diverted resources from palliative care, worsening systemic inequalities.

7. Reporting and Transparency: The Bill's reporting framework omits critical elements, such as mandatory reporting of complications, audit mechanisms for assessments, and provisions for long-term data retention. This lack of data undermines oversight and accountability. 

The Bill does not require evidence that care needs have been met, and as presented, does not protect patients from avoidable harms.

Submission

About Living and Dying Well (LDW)

1. Living and Dying Well (LDW) is an independent think-tank researching balanced, evidence-based information on end-of-life care. This includes the ethical, social, and legal implications of assisted dying and euthanasia, and ensures high-quality, compassionate palliative care that affirms dignity and alleviates suffering.

2. The Terminally Ill Adults (End of Life) Bill raises concerns regarding the implications for care provision, societal attitudes, and the protection of vulnerable individuals. This submission analyses key provisions of the Bill, to evaluate its impact on patients, healthcare professionals, and the wider community.

  Eligibility and Prognostic Uncertainty

  Prognostic Uncertainty

3. The Bill’s reliance on prognostication, particularly the six-month life expectancy threshold in Section 2, introduces profound risks. Prognostication is inherently imprecise, with studies showing that physicians often overestimate survival times, sometimes by a factor of five [1] . A systematic review found that survival estimates in palliative care had an accuracy rate between 23% - 78% for six months prognosis [2] .

4. For chronic or fluctuating conditions like organ failure, disease progression can vary significantly, making the six-month prognosis unsuitable for such a definitive decision. Prognostication is particularly difficult in those patients with multiple comorbidities, without close monitoring of the disease trajectory. The inaccuracies mean that a prognosis estimate is a qualifying condition, not a true safeguard.

  Capacity and Vulnerability

5. The Bill’s reliance on the Mental Capacity Act 2005 is inappropriate. The Mental Capacity Act is designed to prevent actions being done to a person against their will and therefore seeks to support the person in expressing wishes and in their decision. It also provides for donating a Lasting Power of Attorney should the person lose capacity.

6. The decision to end one’s life is significant and requires an assessment of the competence of decision-making for such a major decision. There are complex psychological factors influencing decision-making ability even when patients have capacity for decisions lesser than the decision to end life. In jurisdictions like Canada, cases have shown individuals seek assisted dying due to treatable psychosocial distress, underscoring the necessity of rigorous mental health evaluations [3] .

7. Additionally, Capacity assessments are not designed to detect coercion. The Bill should require a separate assessment for coercion, to be stipulated in regulation, and the report supplied to the High Court.

8. This Bill should require the assessor to stipulate why the involvement of a psychiatric assessment of the patient is unnecessary.

  Assisted Dying as a Treatment Option

  Sections 1 and 2

9. Sections 1 and 2 of the Bill frames death as a treatment option for individuals facing complex challenges and normalises assisted suicide in order to address suffering. The Bill does not require the patient to be "suffering" in any way as a basis for assisted suicide. Societal pressures and suicidal ideation may make many particularly vulnerable when ill. When barriers to excellent care seem insurmountable, assisted dying can be perceived as the only option [4] . In rural Australia, for example, limited access to palliative care led some patients to feel they had "no choice" but to pursue assisted dying. Such cases highlight the risk that structural inequalities, rather than genuine autonomy can drive decisions toward assisted dying.

10. Assisted dying should not be introduced where access to care and services are overstretched, as in the current NHS.

11. The Bill’s failure to prioritise investment in comprehensive care systems, by not addressing gaps in palliative and psychological support services, creates an environment where assisted dying can be seen as frightened patients’ only option, rather than receiving adequate care to improve their quality of life.

  Suicide Prevention and Reframing

12. Section 24 of the Bill redefines assisting suicide as "assisted dying," removing criminal liability for those facilitating or encouraging deaths under its provisions. The ethos of medicine is to relieve distress and to prevent suicide. In US states with legalised assisted suicide a shift in attitudes in the doctor-patient relationship has also influenced wider society, with increased rates of unassisted suicides in these states [5] .

13. This reclassification blurs the clinical duty of suicide prevention. In the UK, the suicide rate is increase around the time of being diagnosed with severe or terminal illness, suggesting a failure of necessary support when receiving such devastating news, the rate is lower in those nearer death. [6] [7]

  Sections 3 and 4

14. Sections 3 and 4 of the Bill presumes capacity as a core principle of the Mental Capacity Act. However, decision-making is impaired by existential distress, fears of being a burden, and perceived loss of dignity which often underpin the reasons given behind such deaths, as in Canada [8] .

15. The absence of requiring psychiatric evaluations in the Bill risks impaired decision making. Without integrated frameworks to address mental health and social challenges, the legislation misdirects attention toward providing death as a solution to potentially treatable conditions, perpetuating systemic inequalities for those with unmet care needs.

16. Legalising assisted dying can exacerbate systemic inequalities, encouraging individuals to seek death due to unaddressed needs rather than an informed and autonomous choice [9] . In Canada, the rapid expansion of MaiD8, undermines disabled people’s human rights. [10]

  Conscientious Objection

17. Section 23 of the Bill provides protections for healthcare professionals unwilling to participate in assisting suicide only to the extent as outlined in the Bill. This is a narrow conscience clause as it does not cover other staff, nor dispensing pharmacists.

18. Evidence from Canada’s Medical Assistance in Dying (MAiD) framework highlights that non-clinical staff often face dilemmas when tasked with administrative or logistical support for procedures they oppose [11] . Similarly, an Australian study found that professionals who opted out of direct participation still faced professional exclusion and organisational pressure [12] .

19. The provision of no detriment to those with conscientious objections would not cover all non-medical staff and should specifically state that it applies to doctors in training posts.

20. Comprehensive protections must ensure conscientious objection applies to both direct and indirect participation, including referrals, documentation, and coordination.

  Lethal Substances

  Procedural Failures and Risks

21. Sections 18-22 lack sufficient detail on managing complications. Drugs to effect death are to be specified by the Secretary of State. However, substances used in other jurisdictions (often massive overdoses of a mixture of drugs) have not undergone standard regulatory body approval processes anywhere in the world. Evidence from Oregon indicates that death is not straightforward; in half of assisted suicide cases, deaths took between 53 minutes and 137 hours to occur [13] . Furthermore, the Bill does not clarify what the doctor should do in cases of complications or if the drugs fail to end the person’s life, a scenario that has occurred nine times in Oregon where individuals reawakened after administration10.

22. The practitioner providing the drugs may "assist that person to ingest or otherwise self-administer" the substance, potentially pressing the person’s finger on the syringe. This blurs the requirement of self-administration into euthanasia.

23. Some drugs used to end patient’s lives are known to cause distressing pain and other symptoms but research into the pharmacodynamics is absent.

  Reporting and Accountability

24. There is no requirement for mandatory reporting of complications, nor of any action taken in the vent of complications occurring.

  Funding and Palliative Care

25. Experience from jurisdictions where assisted dying is legal demonstrates a slowing of palliative care developments: assisted dying often competes for funding and resources. These systemic challenges undermine equitable access to palliative care and weaken its delivery. [14]

26. Evidence from Western Europe highlights how jurisdictions with assisted dying have had slower expansion of palliative care. Between 2012 and 2019, countries without assisted dying laws increased palliative care provision by 25%, compared to just 7.9% in countries with assisted dying 13.

27. Resource allocation shifts away from palliative care to fund assisted dying frameworks. In New South Wales, the introduction of assisted dying came with a promise of an extra $743 million on palliative care over five years only to see a $249 million reduction in palliative care budgets the next year, while $97 million was allocated to support the rollout of assisted dying services [15] .

28. The absence of adequate palliative care services drive inequality. Currently an estimated 100,000 people die in the UK each year with unmet palliative care needs [16] . Vulnerable populations, including those in rural or underserved areas, face heightened risks as the infrastructure to support their end-of-life needs remains insufficient including their psychological, social, and existential needs.

29. The Bill must specify that spending on assisted dying must not come from any palliative care commissioning budgets.

  Bias Toward Death

30. The Bill creates a systemic bias towards assisted dying through several mechanisms:

31. Doctors who are uncomfortable proceeding with an assessment must make an "effective referral" to a practitioner inclined to provide assisted suicide. This mandates participation in a process they may oppose for any reason, including where they have concerns about the social situation of an individual. It ensures that patients are directed to a provider likely to approve their request. The coordinating doctor is tasked with finding an independent doctor to conduct a second assessment. This structure decreases impartiality, as the independence of the second opinion will be influenced by the coordinating doctor's choice of practitioner. The Bill should be amended to ensure a register of trained assessors is available and selection is a managerial duty of an official holding a register. Court refusals of assisted dying requests can be appealed, but approvals cannot, even if new evidence emerges. This imbalance makes it significantly harder to challenge a decision to proceed with assisted dying and counters the principle of equipoise in law.

32. The penalty for destroying or falsifying paperwork is life imprisonment, yet coercion, a direct threat to patient autonomy, carries a maximum sentence of only 14 years. This disparity minimises the gravity of coercive encouragement in the assisted dying process. The Bill suggests state funding for assisted suicide, much of the UK’s palliative care remains heavily reliant on charitable contributions. This creates a systemic bias towards assisted dying by providing easier access to it over comprehensive palliative care options. These provisions collectively establish a default trajectory towards death and perpetuate the perception of death as a default solution to suffering.

  Reporting and Transparency

33. The Bill’s reporting and transparency framework contains several critical gaps. Clause 27 provides no clarity on how long data on assisted deaths should be retained, leaving uncertainty about long-term accountability. Clause 29 does not specify what data need to be collected or what reports should be provided to Parliament regarding deaths from assisted dying. While Clause 29 mandates registration of cases as "Assisted Death" and includes the underlying terminal illness, it is unclear how coroners might intervene to verify diagnoses or address discrepancies. Additionally, current schedules omit sections for recording complications, prolonged dying, or failure to die (Schedule 6). They also lack fields for demographic data, reasons for requests, and justifications for approvals (Schedules Page 25).

34. Responsibility for overseeing assisted dying, including guidance and monitoring, will rest with Chief Medical Officers (CMOs). This entails significant resource implications and grants wide discretionary powers. Despite this, there is no mandate to disclose decision-making processes for approvals, unlike refusals, which must be reported. Additionally, the Act’s operation would not be reviewed until five years after commencement, delaying any necessary reforms.

35. There is no recording of the assessments themselves allowing scant or superficial assessments to go undetected.

36. There is also no provision for auditing the assessment and no ability for the medical examiner, who has responsibility for confirming the legality of care prior to death, to be able to scrutinise the assessments.

  Conclusion

37. The Terminally Ill Adults (End of Life) Bill contains profound flaws in its safeguarding, reporting, and transparency mechanisms. These deficiencies undermine patient protection, fail to address systemic inequalities, and risk creating significant harm. Evidence from other jurisdictions reveals the detrimental impact such legislation can have on the provision of palliative care and the overall integrity of healthcare systems. These deficiencies must be addressed for this legislation to be made safe for the integrity of our healthcare systems.

January 2025