Terminally Ill Adults (End of Life) Bill

Written evidence submitted by St. Gemma’s Hospice (TIAB16)

Subject: Request for Amendments to Clauses 23 and 32

Summary

St. Gemma’s Hospice, a Catholic-founded organisation based in Leeds, submits this evidence to the Committee in response to the Terminally Ill Adults (End of Life) Bill. This focuses on the implications of Clause 23 which concerns conscientious objection and Clause 32, which empowers the Secretary of State to ensure the provision of assisted dying services. Whilst the services we deliver now are inclusive, open to people regardless of race, religion, gender, sexual orientation, age or diagnosis, as an institution governed by principles that categorically preclude participation in assisted dying, Clauses 23 and 32 raise profound ethical, legal, and operational concerns for St Gemma’s.

Our submission provides a brief introduction to our organisation, outlines our concerns with clauses 23 and 32, matters on which we have expertise and factual information, and respectfully proposes clause amendments to safeguard the rights of hospice service and long-term care providers and in doing so not risk the provision of palliative care.

1. Introduction

St Gemma’s Hospice was established in 1978 by the Sisters of the Cross and Passion to support the community of East Leeds. The Hospice provides essential palliative and end of life care services free of charge to patients, families, friends and carers on its In-Patient Unit, in Outpatients and in the community – in patient’s homes, care homes and for the homeless and vulnerably housed. The broad range of services includes adult and children’s bereavement, social work support and spiritual care. As a University Teaching Hospice, St Gemma’s has in addition a well-established education and research team and a strong collaborative partnership with the University of Leeds.

The population of Leeds is 812,000 (Office of National Statistics, 2022), with St Gemma’s Hospice supporting at least half of the city. Approximately 1,400 new patient referrals are received each year, with around 500 in-patient admissions each year. St Gemma’s is a key provider in the Leeds health and care system, working closely with the Leeds Teaching Hospitals Trust and other providers to help prevent avoidable hospital admissions and ensure rapid and effective patient discharge when required. Advance Care Planning with patients and their families, which enables people to make important and informed end of life choices, is a critical element of our services.

The running costs of St Gemma’s Hospice in 2023/24 were £14 million, with 30% of income provided by the NHS (Integrated Care Board). All the financial support we receive from the NHS is spent directly on patient and family services. The remainder of our funding comes from the local community in the form of donations, legacies, fundraising initiatives and a chain of charity shops.

2. Concerns with Clauses 23 and 32

I. Conflict with Foundational Principles
St. Gemma’s Hospice operates under a governing framework aligned with Catholic values, which prohibit involvement in assisted dying. This is enshrined in the Articles of Association most recently updated and signed in May 2022. Clause 32 risks the Secretary of State compelling faith-based and other institutions to act in violation of their foundational principles without adequate parliamentary scrutiny if it is interpreted to mandate participation by all NHS-funded providers: indeed, the Secretary of State will have the power to mandate such provision in any circumstances, even for privately or charitably funded institutions.

It is essential that the scope of the powers of the Secretary of State under this Bill are expressly delineated on the face of the Bill and is not postponed as a matter for future regulations. As an alternative, if this is not possible, it should be made clear in the Bill that any such regulations must be subject to consultation. In addition, if the Bill is ambiguous, as it currently is on the participation of institutions, there is a serious possibility of legal challenge to a hospice or care home that wishes not to involve itself in assisted dying. This could lead to hospices and care homes exiting the sector.

II. Threat to Organisational Integrity
The absence of protections for institutions, as distinct from individual practitioners (covered under Clause 23), could result in untenable conflicts between statutory obligations and ethical convictions rooted in faith-based values and founding principles. This oversight undermines the autonomy of faith-based healthcare providers and compromises the diversity of end of life care offerings in the UK.

Furthermore, the provisions of Clause 23 (b), if not qualified by express protection for institutions, would prevent an institution from taking any action against an employee who acting against the agreed policies of that institution. For example, an institution might express its integrity though a policy that, among other things, prohibited employees from providing a lethal substance onsite for self-administration by a patient onsite. Under the current Bill, institutions would not have the means to require compliance with such a policy. In the United States, in every state that has legalised physician-assisted suicide the individual conscience protection of professionals wishing to participate has been qualified with the express protection of institutions not to have to participate.

III. Impact of Service Closure
If compliance with assisted dying provision becomes a condition for NHS funding, institutions like St. Gemma’s may have no alternative but to cease operations entirely given its reliance on NHS funding for its financial sustainability. Such closures would have devastating consequences for the communities we serve, eliminating high-quality palliative and hospice care options for thousands of terminally ill patients annually. If patients in our catchment area could not be cared for by St Gemma’s, this would, at a minimum, reduce the degree of choice for many and put at risk the availability of palliative care across large parts of the city. Patients would be admitted to hospital or would die at home in a way that is difficult to reconcile with the palliative care ethos of choice, quality of life and quality of dying. This would increase demand on a health and care system that is already under unprecedented pressure, leading to devastating outcomes.

IV. Infringement on Religious Freedom
Clause 23 and Clause 32, as currently drafted, could infringe on the rights of organisations to freedom of religion and belief under Article 9 of the European Convention on Human Rights. Mandating participation in activities fundamentally opposed to an institution’s ethical framework would erode the pluralistic values that underpin the UK’s healthcare system. This curtailment of religious freedom does not just threaten Catholic-founded institutions and institutions associated with other faith communities, but also non-religious institutions that have a commitment to a particular set of values and beliefs. This might be, for example, because of a commitment to an understanding of palliative care as reflected in the origin of the palliative care movement in the United Kingdom, and in statements of international bodies.

In Canada, a non-religious voluntary-aided hospice was forced to close because it would not agree to deliver ‘medical assistance in dying’. There is a real threat of similar infringements of freedom of belief under the Bill as currently drafted.

3. Proposed Amendments to Clauses 23 and 32

To address the above concerns, we respectfully propose the following amendments to Clauses 23 and 32:

I. Explicit Exemptions for Faith-Based and Independent Providers
Amend Clause 32 to include provisions explicitly exempting organisations with governing documents that prohibit participation in assisted dying from being compelled to offer such services.

II. Recognition of Institutional Conscientious Objection
Extend the conscientious objection provisions currently applicable to individual practitioners under Clause 23 to institutions, affirming their right to maintain ethical and, where appropriate, religious integrity. Adequate protection will include protection from having to refer patients to providers of care who will facilitate assisted suicide and will ensure that no provider is penalised or excluded from NHS funding for upholding their ethical principles and beliefs.

4. Conclusion

St. Gemma’s Hospice urges Parliament to amend Clauses 23 and 32 to safeguard the rights of hospice service and long-term care providers and in doing so not put at risk the provision of palliative care in significant parts of the country.

20 January 2025