Will the recent raft of policy developments in palliative and end of life care make a difference for patients?

The bill to legalise assisted dying has brought a new political focus on the provision of end of life care. While it remains possible that the bill will be timed out in parliament and therefore does not pass, there are several other recent policy developments that are relevant to end of life care which will remain pertinent even if that bill doesn’t become law. 

In this blog, we assess whether those developments are likely to make a noticeable difference for people at the end of life and for their families and carers.

What are the current policy interventions that could improve palliative and end of life care?

The 10-year health plan published last July set out the government’s “three shifts” – from treatment to prevention, from hospital to community, and from analogue to digital. On paper, the goals of the plan should be beneficial for end of life care services, in particular the shift to community services. Palliative care is one of the few services where there is evidence that improving community provision can both improve outcomes for patients and families, and save money for the taxpayer. 

The medium-term planning guidance starts to clarify how the 10-year plan will become a reality. It identifies people at the end of life as a priority for neighbourhood health teams (where services come together to support the needs of a geographical population). For patients and their families, navigating fragmented services provided by multiple NHS, social care and independent hospices is a huge challenge. The vision of neighbourhood teams offers the opportunity to improve care coordination, which is often left to family carers.   

The planning guidance also makes an initial step towards a more consistent approach to planning palliative and end of life care, by requiring integrated care boards (ICBs) to ensure they understand current and projected service use and the cost for people at the end of life. This is a welcome development, but falls short of ensuring that specialist palliative care is available around the clock on an equitable basis, as envisaged in the duty on ICBs set out in the 2022 Health and Care Act. 

A modern service framework (MSF) for palliative and end of life care is also under development, building on recently developed service specifications and commissioning guidance. The MSF is intended to support consistent, high-quality, high-value and equitable care, and address the current wide variation in access to care, by reducing unwarranted variation. However, NHS England has been clear during the stakeholder engagement for the MSF that there is no new funding to implement the MSF. 

Risks and barriers to improving end of life care

Across the whole of health and care – and indeed public services – financial pressures are endemic. While there are opportunities to deliver end of life care more cost effectively, transitional funding is needed to support change, as well as investment in underlying infrastructure requirements (such as joined-up clinical records). 

There is a specific challenge with funding for specialist palliative care delivered by independent hospices. More than half of the funding for the provision of hospice services for adults is from charitable giving. Funding to hospices from ICBs is often through grants, based on historical arrangements, rather than being contracted, with no transparency about the level of activity (or outcomes) delivered. Central government grants have been made to the hospice sector as emergency stop-gaps to address financial shortfalls. 

More effective, needs-based commissioning for end of life care (covering both generalist and specialist care) is needed to enact a shift towards more effective care. People in the last year of life account for 30% of days spent in hospital following an emergency admission – but only a third of ICBs have dedicated 24/7 palliative care advice lines, as recommended by NICE, let alone resources to deliver specialist palliative care out of hours. Almost a third of people in England are estimated to die with unmet needs for palliative care. 

The role of ICBs in the future is to be strategic commissioners. But given the significant change in their organisation form, and their lack of expertise in commissioning end of life care in many areas, it is doubtful they will have the capacity to focus on this cohort. 

Data is also needed at a local level to understand the services used at the end of life, including generalist care delivered by the NHS such as community nursing, general practice and ambulance services, as well as specialist care (either in hospices or NHS hospital based specialist teams). Analytic capacity in the NHS is already stretched and likely to be further disrupted by the changes affecting ICBs and NHS England.

Shifting care to the community will also mean developing the community and social care workforce. An estimated one in four district nurses are leaving the profession – hollowing out a service that is critical to providing end of life care at home. The upcoming workforce plan is an opportunity to develop the workforce for future improvements in end of life care. Ensuring that more clinical training takes place in community settings could, for example, ensure the workforce of the future is better equipped to work outside of hospital. 

In addition, that plan needs to address skills gaps – by embedding training in end of life care, and equipping staff to have difficult conversations with patients and families.

Looking ahead

Whether or not the bill to legalise assisted dying ends up receiving Royal Assent, this could be a period of real importance and opportunity in improving palliative and end of life care for patients and families. Maintaining momentum from end of life care’s currently higher profile will be essential, even though the reality is undeniably tough. There is no additional funding to implement change and there are competing priorities and targets, both locally and nationally. National policy and guidance can only go so far and the real change will come down to the concerted efforts of local systems, driving collaboration across sectors. 

The first steps are to understand service gaps and need, and there are examples of ICBs that are transforming end of life care, building on needs-based commissioning, working with communities and service providers. The planning tools and contractual levers to do this exist, but to make a difference there will need to be a concerted focus on care for this group of patients, and collaborative working with social care and the hospice sector, and at different levels of the system, from neighbourhoods to ICBs. 

But these changes will be easier said than done. Local systems have not got any more money and are already extremely busy doing countless other things. It’s far from certain they will have the necessary time and capacity to deliver better end of life care in a way that brings meaningful improvements for patients.