New report on inequity in palliative and end-of-life care and bereavement support

Sue Ryder’s vision is for a society that supports everyone through dying and grief. To support this, we are focused on breaking down barriers so that people from all communities can access high-quality, culturally relevant palliative and end-of-life care (PEoLC) and bereavement support.

To take steps towards this goal, we commissioned the University of Birmingham to review what is already known about the needs of population groups who experience inequities in PEoLC and bereavement support in the UK. These population groups include people who are LGBTQ+, people experiencing homelessness and people with learning disabilities.

Our aim for this work was to provide information that the PEoLC sector, researchers and Integrated Care Boards (ICBs) can use to help them better understand and address need.

• There is more evidence for some population groups and areas of care than others. For example, there has been more research on the experiences of people who are discriminated against because of their race. And there is not much research on bereavement support.
• There isn’t much research that hears from patients directly, with caregivers, family members and health and social care professionals often being used as research participants instead.
• Findings suggest that although poorly supported groups can be different, they often miss out on care for very similar reasons. Common experiences include poor communication, cultural insensitivity, medical mistrust acting as a barrier to engagement with the healthcare system and poorer outcomes.

The review found that for everyone to have fair access to PEoLC there must be:

• Compassionate and culturally sensitive end-of-life care.
• Improved understanding on how palliative and hospice care can support people.
• Appropriate access to other forms of healthcare and primary care, such as their GP.

The research found that certain inequalities increase a person’s likelihood of experiencing inequity in PEoLC and bereavement support, such as:

• Low economic status: Low income/ wealth, without the resources or opportunity to change their situation for the better.
• Social exclusion: Not being able to access the same rights and opportunities as others, usually because of poverty or being part of a minoritised group.
• Low health literacy: Not having the ability to understand and use health information.

The report sets out a range of recommendations aimed at hospices, ICBs and researchers. Key recommendations include:

Hospices and ICBs should ensure all commissioned care meets the shared needs of population groups who experience inequity in PEoLC and bereavement support.

ICBs should measure and address the shared vulnerabilities that increase a person’s likelihood of experiencing inequity in PEoLC and bereavement support.

As research into inequity continues, researchers should:

• Address the evidence gaps identified within this review.
• Ensure research engages with people receiving PEoLC and experiencing bereavement, particularly groups who have historically had less research involvement.

Going forward, we are continuing our partnership with the University of Birmingham, who will use insights from this report to engage with key stakeholders and develop practical tools which will support ICBs to overcome health inequities at the end of life.