Clarity and equity: how we can improve end of life care

Since 2022, the Health and Social Care Act has included a statutory requirement for Integrated Care Boards (ICBs) to commission and fund palliative and end of life care (PEoLC) in their area. Under this system, it’s vital that hospices build strong relationships with their local ICB. 

In a report released earlier this year, the Health Services Safety Investigations Body (HSSIB), previously known as the Healthcare Safety Investigations Branch, looked into how the provision of palliative and end of life care varies across England and what ICBs can do to ensure they are meeting demand in their areas. 

Hospice UK was pleased to support this important report and its stark conclusion that the way that the delivery of palliative and end of life care is currently set up in England means there are gaps in how it is provided. 

With demand for this care expected to grow in coming years, now is an important time to learn from the HSSIB recommendations so the hospice sector can be ready to meet this increased demand. 

Here, Helen Jones and Nick Woodier from the HSSIB explore how NHS England can support ICBs in their palliative and end of life care work.

Ensuring health and care can provide for the holistic needs of people and their families following palliative diagnoses and at the end of life is a legal requirement. The HSSIB’s recent report highlighted variations in palliative and end of life care across England.

HSSIB is the independent investigator of patient safety concerns in England with the remit of making recommendations to support improvements in health and care across the country. 

Our recent investigation considered how ICBs might meet the expectations of the Health and Care Act 2022 to arrange for the provision of services for palliative and end of life care. We heard about the importance of understanding local population needs and providing for them. 

However, we also saw the challenges faced in understanding those needs, and barriers to providing holistic palliative and end of life care. In response we made three safety recommendations to NHS England to support the ICBs in their work.

During the investigation we also identified several areas that may be beneficial for ICBs to consider in support of regional palliative and end of life care services. They fit into three themes: variation, integration, and supporting discussions about death and dying. 

We found variations in service provision across England, leading to inequitable access to care. 

One person told us, “She would have got care if we lived in a different bit of the country.”

The factors that contribute to variation are multiple. They include the historical establishment of hospices in certain parts of the country (which is also true for most palliative and end of life care provision), and long-term funding arrangements. Workforce, and access to services in rural areas, are also important contributing factors to variation.

However, we also found confusion around availability arises from the variation in terms and definitions used in palliative and end of life care, leading to ambiguity for patients, the public, and staff.

A key feature of palliative and end of life care is its aim to meet the ‘holistic’ needs of a person, including their physical, psychological, social, and spiritual needs. Across England we saw various providers seeking to meet those needs, and we know that there are examples of good practice in joined up services where 24/7 access to support and advice is available.

However, we also heard that, when people needed care, they did not know where to turn to for help. 

“One family member told us, ‘He is sitting there with no one to turn to.’”

While gaps in available services were found, where services are available, we found it difficult to understand their varying roles, responsibilities, and how to access them. This was highlighted by the differences and similarities found in descriptions of hospice versus palliative care. 

Staff described a confusing landscape of services and were “not surprised” that people were confused about what is available because it is ambiguous and not ‘joined up’. 

Due to limited integration and collaboration between services in regions, they are not always able to meet people’s needs. 

During the investigation we also heard about the under-recognised, but important role society has in supporting people’s needs. 

Communities can provide a valuable contribution to supporting people through difficult times in their lives, and can help support discussions and planning for death and dying. 

Staff told us of the need to “normalise death and dying” in society with encouragement for people to discuss this subject that is sometimes seen as “taboo.”

It’s clear that people’s needs are not always being met. In response we anticipate that our recommendations to NHS England will support improvements in care. 

Our recommendations are only able to influence a small part of the palliative and end of life care system, highlighting again the important role community-based support has to play. 

Our investigation also made several observations, including those for ICBs. ICBs are well positioned to support improvements in palliative and end of life care in their regions by:

• identifying services, their roles, and how to access them; 
• supporting collaboration between various services in a region; 
• working with communities to build support networks and encourage discussion. 

Read HSSIB’s investigation report.

10 January 2024, 12-1 pm online

Join us at our Lunch and Learn event with Dr Nick Woodier and Helen Jones from HSSIB (Health Service Safety Investigations Body) who will be discussing the report ‘Variations in the delivery of palliative care services to adults.’

Reserve your place.