​​Terminally Ill Adults (End of Life) Bill – House of Commons Second Reading

1. We do not take a position in favour of or opposed to assisted dying. This briefing sets out the equality and human rights considerations raised by the legislation and which we believe Parliament will wish to consider. These include the UK’s domestic and international legal obligations.

2. This briefing reiterates the principles in the analysis we provided to the Health and Social Care Committee’s 2022 to 2023 inquiry into assisted dying.

3. This is complex legislation which engages equality and human rights principles to a significant extent. Parliament will need adequate time, expertise and the supporting materials required to effectively scrutinise the bill, including sufficient time at committee stage, should the bill pass its second reading, to allow for detailed and expert consideration of the legislation.

4. As a Private Members’ Bill the requirement under the Human Rights Act 1998 for a minister to declare its compatibility with human rights does not apply. We also note that the bill is not accompanied by an equality impact statement. We welcome the reference to human rights law in the bill’s explanatory notes. However, we consider this to provide insufficiently detailed analysis of the human rights considerations relevant to this bill. We would strongly recommend that, at the earliest opportunity, Parliament is provided with further information and assurance about the bill’s compatibility with equality and human rights. This could be supported by scrutiny conducted by the Joint Committee on Human Rights. 

5. Article 2 of the European Convention on Human Rights (ECHR) protects the right to life. It does so by placing two obligations on the state:

• the positive obligation to protect the right to life by law
• a negative obligation not to intentionally deprive individuals of life

For assisted dying to be compliant with this right, the legislative safeguards must include ensuring that any person taking their life has capacity to make that decision, and has done so freely.  

6. Article 3 of the ECHR protects the right to freedom from inhuman or degrading treatment. It does not create a right to assisted dying. However, it may oblige the state to reduce suffering through palliative care and pain relief.

7. Article 8 of the ECHR protects the right to respect for private life. This right includes bodily autonomy and self-determination. It includes an individual’s freedom to make their own decisions about seeking, consenting to or refusing medical treatment and to decide by what means and when their life will end. Some states have legalised assisted dying on this basis.

8. Article 9 of the ECHR protects freedom of thought, conscience and religion. To be compatible with Article 9 rights, this legislation should ensure the beliefs of individuals, and the beliefs of medical professionals, are protected and respected. This will require consideration of whether clause 23, which sets out that registered medical practitioners or other health professionals are not obligated to participate in the provision of assisted dying, provides sufficient protection for those who wish to conscientiously object. Parliament may also wish to consider whether there is a need to provide for conscientious objection for others, such as judges.

9. Article 14 of the ECHR provides for all people to enjoy their rights without discrimination. An important consideration for Parliament is whether the proposed legislation would lead to any discrimination.

10. The European Court of Human Rights has never decided that assisted dying laws violate ECHR rights, nor that ECHR rights confer a ‘right to die’. The court has repeatedly noted that there is no clear consensus between member states and that it is a matter for individual Parliaments to consider. We agree that ECHR rights neither confer a right to assisted dying nor prohibit it.

11. The Health and Social Care Select Committee’s 2024 inquiry report into assisted dying and assisted suicide noted that many of the jurisdictions that have legislated for assisted dying have done so recently, and there is still much to learn. We agree with the committee’s observation that the complexity of the issue is highlighted by the fact that both those opposed to, and in favour of, assisted dying refer to outcomes in other jurisdictions, such as Canada, Australia and New Zealand, to support their positions.

12. We also note with interest the Health and Social Care Committee’s findings that there were no indications of a deterioration in the quality of palliative or end-of-life care linked to assisted dying in other jurisdictions. In some instances, it was linked to improvements in care. An example of this is in Austria, where legislation was enacted alongside measures to protect the rights of citizens (such as additional funding for palliative care) and a requirement that one of the doctors required to sign-off on assisted dying requests is an expert in palliative medicine.

13. This legislation is likely to have particular impacts for older people, who are more likely to have a terminal illness.

14. It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disablity. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.

15. A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity in the context of a decision of this nature and gravity. It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005. Sensitive consideration must be given, in particular, to the interaction between mental capacity, mental health issues, learning disabilities and conditions such as autism. Clause 30 of the bill states that the Secretary of State ‘may’ issue codes of practice relating to these and other matters. However, it does not oblige them to do so. We consider that these codes would be an important supplement to the Mental Capacity Act 2005 in the context of assisted dying. 

16. It is important to consider the risks of discrimination when determining how doctors and the courts would assess a person’s desire to choose when and how to end their own life. In particular, safeguards must be in place to ensure that any determination of a person’s capacity or whether they have a ‘clear, settled and informed wish’ to end their life is not prejudiced by assumptions based on the age of the person. This might include, for example, assumptions that an elderly patient who can be forgetful or confused therefore has dementia or is unable to take a clear and informed view. Similarly, determinations must also not be prejudiced by any assumptions based on the protected characteristic of disability.

17. There is evidence that, at present, there is variable availability and quality of end-of-life care across the UK. For example, Marie Curie’s 2024 Better End of Life report found ‘patchy and inconsistent provision of care’. This regional variability could put some people in a position where they consider assisted dying where they may not otherwise have done so if there was a viable alternative to alleviate suffering and end their life in dignity. As such, to ensure that assisted dying is compatible with Article 2 and Article 3 rights (as stated in paragraphs 3 and 4), high-quality palliative care should be available to all who need it. Patients must also be informed about its availability. We note that clause 35 of this bill recommends after five years ‘an assessment of the availability, quality and distribution of appropriate health services to persons with palliative care needs’. However, the bill currently recommends no such assessment before bringing this legislation into force.

18. It is also important to address any inequalities in access to end-of-life care for protected characteristic groups. For example, both the Care Quality Commission and Hospice UK have raised the issue of poorer access to palliative care for people with learning disabilities. Marie Curie in 2022 also highlighted issues of cultural and ethnic inequalities in the availability of information.

19. Provision of equitable, high-quality palliative care and pain relief, as well as appropriate psychiatric care, may also form part of the state’s positive obligation to ensure that everyone, including disabled and terminally ill people, has access to the highest attainable standard of care, under Article 12 of the International Covenant on Economic, Social and Cultural Rights. This protects the human right to the highest attainable standard of physical and mental health.

20. Parliament will be aware of the need to consider how to ensure this bill adequately safeguards against coercion by medical professionals or family members. We note that this bill proposes that doctors and the courts must be satisfied that a person seeking assisted dying has not been coerced or pressured by another person, and, further, that clause 26 creates a specific criminal offence of coercion. It will be important for Parliament to give careful consideration to how much scrutiny the High Court could reasonably give in a non-adversarial process.

21. Furthermore, Parliament should also appreciate that coercion or pressure is not necessarily only something which is applied directly by other individuals. In a UN report about assisted dying and disability, UN experts highlighted that ‘people with disabilities, older persons, and especially older persons with disabilities, may feel subtly pressured to end their lives prematurely due to attitudinal barriers as well as the lack of appropriate services and support’. It is important that all practicable social conditions, support, care and services are in place so that people with serious or terminal illnesses can decide how and when to end their life freely and without feeling coerced, and therefore in a way which is compatible with Article 2 rights.  

22. Creating these conditions includes equal access to health and social services. It must include active efforts to create a society where people are able to live life on equal terms, free from discrimination. Parliament should consider carefully how it might ensure that such efforts are made if this bill is passed.