Hospice UK response to Senedd Health and Social Care Committee engagement on Legislative Consent Memorandum for the Terminally Ill Adults (End of Life) Bill

Hospice UK has no collective view on whether the law should change on assisted dying. However, we remain concerned about the significant impact this Bill could have on our hospice members in Wales, which provide vital care and support to over 20,00 adults and children affected by terminal illness every year. Hospices face mounting financial pressures and uncertainty about how they will be affected by the Bill. There are also significant inequities in access to palliative and end-of-life care – with 1 in 4 people already missing out on the care they need. Without urgent reform of the hospice funding model in Wales and action to end the postcode lottery for palliative care, the Bill risks widening existing gaps and putting further pressure on services already under strain. Regardless of how the Bill progresses, we must urgently address the sustainability of the hospice sector and ensure that high-quality palliative care is available to everyone, everywhere. 11th June 2025

Clause 37: guidance about the operation of the Act

We don’t have a specific view on this clause, however we believe the Chief Medical Officer must consult with charitable hospices and palliative care providers in the development of any guidance about the operation of the Act.

Those working in palliative care have a wealth of expertise and experience working with people who are terminally ill in Wales. Guidance produced by the CMO should recognise and reflect this, especially when it comes to understanding and engaging vulnerable individuals and groups to ensure there are sufficient safeguards to protect their interests.     

 

Clause 39(1), (2), (5) and (6): Voluntary Assisted Dying Services: Wales

Current uncertainty

As it is currently unclear how, if passed, the Bill will operate in practice, hospices are facing significant uncertainty. This includes uncertainty over how the Bill's provisions will be implemented, what resources will be available, and the practical impact on staff and the people they support.

If the Bill passes, it is essential that Welsh Government develop national policy with charitable hospices and the wider palliative care sector that supports them to navigate the impact of the introduction of assisted dying, and provides them with the flexibility and certainty to make the best decisions for their patients, staff and communities. Guidance needs to specifically focus on the interaction of assisted dying with the hospice sector, recognising that hospices are charitable organisations who in most cases deliver NHS commissioned services and therefore guidance, funding streams and policies fit for NHS services won’t necessarily be fit for them.

Funding 

Regardless of the Bill's outcome, we are clear that there must be urgent reform of the hospice funding model, alongside a commitment to make sure high-quality palliative care is available to everyone, everywhere in Wales. The potential introduction of assisted dying comes at a time when Welsh hospices already face significant challenges due to the ongoing cost of living crisis, rising NHS pay rates and National Insurance increases, workforce issues, and the growing demand for more complex care.

Nearly every hospice in Wales recorded a deficit in the last financial year, with 1 in 5 reducing the number of inpatient beds or wider hospice services as a result of these pressures. Alongside this, need for palliative care in the UK is projected to increase by 13% over the next 10 years (2023-2033) and by 25% over the next 25 years (2023-2048).[1]

Welsh Government have recognised the funding pressures facing charitable hospices and provided much-welcome support to help maintain existing services over the last two years. They have also committed to developing a National Commissioning Framework and Sustainable Funding Settlement for hospices in Wales. However, progress to deliver these commitments has been slow at the same time as demand and complexity of care have risen.

Given the existing financial pressures experienced by many palliative care providers in Wales, it would be unconscionable for funding for an assisted death to be fully met by the state, while other core and specialist palliative care services remained paid for by an ad hoc and increasingly inadequate combination of charitable gifts, hospice shops and statutory funding. Less than a third of Welsh hospice funding comes from Government. Before any implementation of assisted dying, hospice and palliative care services must be safeguarded.

Assisted dying, if legalised, must be funded separately from palliative care. No costs associated with the introduction of any assisted dying service should be met from already inadequate existing palliative care budget envelopes. Provision of assisted dying should not be considered by commissioners as filling the current gap in palliative care provision, with 1 in 4 people already missing out on the care they need.

To address these challenges, it is essential that current and future Welsh Governments continue to develop and maintain a sustainable and enduring partnership with hospices so they have the funding and workforce to meet increasing demand for palliative care.

 Workforce

If passed, the Bill could pose significant workforce challenges for Welsh hospice and palliative care providers. Those who work within palliative care may be opposed to the introduction of assisted dying in Wales. This could potentially have an impact on the retention and recruitment of staff; staff wellbeing; and changes to professional practice.

The UK Government's impact assessment of the Bill highlighted that a high level of individual opt out among professionals may affect service delivery. Conversely, it also highlighted that there could be "new or increased uptake of care as a result of the preliminary discussion with the registered medical practitioner" (as there's a requirement in the Bill to offer a referral to available palliative care during preliminary discussions).

Welsh hospices employ approximately 1,500 highly skilled staff delivering vital palliative care and support to communities the length and breadth of Wales. These include 600 clinical and care staff, alongside physiotherapists, social workers, bereavement support workers, welfare rights advisors, etc.

The UK Government's impact assessment of the Bill recognised potential workforce challenges, highlighting "hospice staff... would need to familiarise their workforce with the VAD service and its processes, including safeguarding, which may entail opportunity costs on staff time".

Based on the eligibility criteria proposed in the Bill the vast majority of adults supported by hospices would be eligible to request assisted dying. This means that hospice staff would potentially need training on issues such as:

·         how requests for assisted dying should be handled

·         what the process is if a patient wishes to access an assisted death

·         updates to existing training on how to have difficult conversations

·         updates to existing training on future care planning

Following a change in legislation, hospices, as independent organisations, would need extra resources to ensure that:

·         all staff had been appropriately trained

·         manuals and procedural documentation had been updated

·         staff wellbeing supports were enhanced

·         public facing materials had been updated to reflect change in legislation, and how the hospice would be engaging

If the Bill passes, it is essential that Welsh Government focus on the workforce implications as part of developing a national policy with charitable hospices and the wider palliative care sector that supports them to navigate the impact of the introduction of assisted dying.

Clause 45: Monitoring by Commissioner

We don’t have a view on this clause.

Clause 47(4) – Provision of information in English and Welsh

More detail is needed to ensure that, if passed, the Bill guarantees Welsh language provision at every stage of the Assisted Dying process. Provision should not be limited to instances where it is requested, as this approach fails to adequately safeguard against coercion and may increase the risk of harm to individuals whose primary language is Welsh

The Welsh language provision needs to be of high quality both in terms of language level but also in terms of clinical and legal understanding. This potentially poses questions regarding staffing a new service with Welsh speakers which will need to be addressed under Clause 39 and take into consideration the impact on hospice and palliative care.

Clause 50(1), (2), (5) and (6) – Regulations

We don’t have a view on this clause.

Clause 54(6), (8) and (9) – Commencement

The possibility of legislation being commenced at different times in Wales and England poses significant uncertainty for Welsh charitable hospices and hospice and palliative care providers operating cross border. Many of our Welsh and English member hospices provide services to patients in both nations and the possibility of having different regulations introduced at different times could potentially be very disruptive for the people we care for. Welsh Government will need to ensure clear public and professional communication to prevent confusion. As emphasised in our response to Clause 39, we want to see the Welsh Government work with and support hospices to minimise disruption to services and ensure continuity of care for patients.

 

 

 

 

 

 


[1] Marie Curie, 2023, How many people need palliative care?