Our response to the Assisted Dying for Terminally Ill Adults (Scotland) Bill

Hospice UK responded to both calls for views, informed by the engagement we had with hospice members across Scotland – we are very grateful for the input given by so many staff as we considered the issues the Bill raises for palliative care and the hospice sector.

While our position is to neither support nor oppose a change in the law, we strongly believe that the assisted dying debate must include discussion about how we can make good palliative care available and accessible to everyone, whoever they are and wherever they live. Nobody should ever feel they have to make the choice to have an assisted death because of a real or imagined fear of not receiving the care and support they need.

If assisted dying is legalised then a key challenge is to ensure that universal, 24/7 access to palliative care is available and that people understand the impact palliative care can have in supporting someone to live well until the end. Hospices play a key role in delivering palliative care across Scotland but their sustainability is currently at risk.

The proposals set out in the Bill will have an impact on palliative care, and it's crucial that as assisted dying is considered parliamentarians listen to and are informed by the expertise of the sector.

Currently in Scotland not everyone gets the palliative care they need. There is a lack of investment in palliative care and we see this clearly in the hospice sector, where statutory funding is not keeping pace with rising costs.

There should be improved data collection and publication, including reporting of outcomes at population levels to ensure palliative care services are reaching marginalised and minoritised groups. 

If assisted dying is legalised, steps should be taken to ensure there is no financial detriment to the hospice sector. The delivery of a sustainable funding framework for Scottish hospices must be fully implemented prior to the legalisation of assisted dying

In response to questions posed by the Committees, other specific points we raised included the following: 

• The current definition of terminal illness on the face of the Bill is very broad. If this definition was used it is likely to result in a lack of clarity for the public and medical practitioners tasked with assessing eligibility.
• A statutory care navigator system should be established, and this should include the provision of trusted information about palliative care for individuals, their family members and health and social care staff.
• There must be the option for someone requesting assisted dying to be referred for a palliative care assessment, if they wish, and the funding should be made available to ensure any palliative care needed can then be provided.
• The legalisation of assisted dying has an impact on a much broader range of staff (and volunteers) than just health professionals. The development and delivery of any training programme or materials must include staff employed by non-statutory organisations such as hospices.
• The Bill’s proposals to support conscientious objection lack clarity. An opt in model for health professionals would have the advantage of providing clarity and could provide assurance and transparency.
• We don't believe the financial memorandum fully reflects the financial impact on the hospice sector if assisted dying were to be legalised. The potential impact on hospices and the services they provide has the potential to be broad-ranging, and at the moment cannot be fully predicted or quantified.
• Any awareness-raising/education campaign in relation to assisted dying should incorporate wider awareness-raising of future care planning, and the care and support that can be provided to the terminally ill through both generalist and specialist palliative care.