What healthcare professionals and clinicians want from palliative and end of life care services

The Macmillan End of Life Care Fund opened a round of applications for funding at the end of last year, and we’ve been inundated with responses. But what’s fascinating is the types of palliative and end-of-life care services our healthcare systems in the UK’s four nations have been asking for in their applications.

So I want to share some of those with you, and explain why we therefore focus on outcomes with our Macmillan Fund partners.

We were really pleased that almost 70% of applications focused on patient-centred care, with around 25% going further to specify they wanted to reduce inequity of access. Addressing these inequities is one of the priorities of the Macmillan Fund, so this was great to see.

Those of us who work in palliative and end-of-life care won’t be surprised that care in the community was one of the biggest elements of service proposals, with almost 50% wanting to address this issue.

Early identification of people in the last year of their lives and better care coordination featured among the primary aims of almost 40% of applications.

Care planning and addressing workforce capacity were also key themes for many teams wanting to innovate in palliative and end-of-life care.

The outcomes these themes will translate to for people at the end of their lives – and around which we’ll want to design a service – include not going into A&E unnecessarily, not staying in a hospital bed when you could be discharged, not having to explain the same things to different healthcare professionals, and even dying in the place of your choice. When it comes to inequity, it’s as simple as getting the same care as others that you deserve just as much.

These outcomes are clear to understand. But it’s equally clear that the NHS doesn’t have an inexhaustible supply of funding. So what can we do that costs the system less without any detriment to the person in the middle – in other words, how can we achieve those outcomes in an affordable way?

This is where social investment comes in – and specifically the Macmillan End of Life Care Fund. In the most basic terms, it’s funding for system transformation. Macmillan takes the financial risk and provides up-front service costs, so if it doesn’t have the expected impact, our partners don’t pay the funding back. But we have all kinds of business analysts, systems intelligence and clinical and financial experts on hand to maximise performance. Crucially, Macmillan is not looking to make a financial return on its investment, and any additional benefits stay with our partners.

For example, the Rapid Intervention in Palliative and End of Life Care (RIPEL) programme at Oxford University Hospitals NHS Foundation Trust is funded by the Macmillan Fund and Sobell House Hospice Charity, and launched in April 2022. To date, the RIPEL programme has supported over 1,000 patients through its services, which include care at home for people in the last days of life and care coordination through its Palliative Care Hub.

Our ambition as clinicians is to see our patients being wrapped up by a service that coordinates your care, gives you access to the expertise you need, and does all the hard work for you. If that happens, someone in the last days of their life doesn’t need to come into hospital. We also need to see the practical and emotional aspects of this kind of care fully considered.

All those ambitions stem from the best outcomes for our patients. If through innovation better outcomes can be achieved while simultaneously avoiding higher costs for the system – like hospital visits, unplanned bed days and ambulance conveyances – then we have a responsibility to try it.