NICE guideline for end of life care: a major step change or well-intentioned but undeliverable at current levels of funding?

Today, Wednesday 16 October 2019, the National Institute for Health and Care Excellence (NICE) launch their new guideline for organising and delivering end of life care services for adults. Sue Ryder’s Policy and Public Affairs Officer, Niamh Buckingham, reports on the difference it could make to the people we care for.

Image of patient with Sue Ryder nurse and doctor

Whilst Parliament is in turmoil over Brexit, here at Sue Ryder we have continued to work to raise the profile and influence action to improve palliative, neurological and bereavement support by highlighting what needs to change.

Our vision is that if you are at the end of your life, you will receive the highest quality care and support designed around your life and your needs, regardless of where you live or who provides your care.

NICE’s new clinical guideline, 'End of life care for adults: service delivery', represents a notable step forward in improving the quality and access of end of life care.

The guidance aims to ensure that people have access to end of life services in all care settings, according to their needs and wishes. It also includes advice on services for carers and other people important to adults who are approaching the end of their life. It is intended to be used alongside the NICE guideline on care for adults in their last days of life, which covers care planning and clinical interventions.

What are NICE’s recommendations?

  1. Identifying adults who may be approaching the end of their life, their carers, and other people important to them;
  2. Assessing holistic needs;
  3. Providing information;
  4. Supporting carers;
  5. Reviewing current treatment; 
  6. Advance care planning;
  7. Reviewing needs;
  8. Communicating and sharing information between services;
  9. Providing multi-practitioner care;
  10. Providing end of life care coordination;
  11. Transferring people between care settings; and
  12. Providing out-of-hours care.

Why the guideline matters

At Sue Ryder we know that when someone needs palliative care, time is often short, so the health and social care system designed to support them (including third sector specialist providers) needs to work seamlessly.

People should be given choices about their care, decisions should be made jointly between the person concerned and the people providing their care, and everyone should have the opportunity to make the most of the time they have left.

It would make a real difference if care homes, the ambulance service, GPs, hospitals and specialist palliative care providers like Sue Ryder could access relevant health and advance care planning records so that decisions reflect the wishes of the person concerned. However we know many attempts have been made to do this (some more successful than others), so this is not likely to happen overnight. 

The challenge of under-funding

We believe that this guideline goes a long way in addressing the changes needed to establish a consistent approach to palliative care, designed around an individual's own needs and circumstances if they are acted upon and adequately resourced.

However the resource issue is a huge challenge – without adequate funding, specialist providers such as Sue Ryder will not be able to provide the excellent level of person-centred care we aspire to provide.

24/7 care is lacking

We're also keen to see much better access to out-of-hours palliative care and advice - 50% of calls to Sue Ryder’s 24-hour palliative expert support service in Bedfordshire are made overnight. 

Access to these vital services means people and their carers do not have to face extra fear, isolation and distress at the end of life. It means that more people can choose to die at home if they wish, confident in the knowledge that they and their carers can access support any time of the day or night. This kind of support is crucial to helping people have the kind of death that they want and avoiding unnecessary hospital admissions.

The guideline in practice

The big question is how this very positive guideline will make a difference in practice when we live in a period of unprecedented and growing demand for palliative care, no clarity on sustainable funding, and huge gaps in the workforce that should be working together to deliver that care.

Sarah Gigg, Director of Nursing and Hospices at Sue Ryder, offers her judgement:

“When somebody requires end of life care every moment counts, both to the patient and to those close to them. It is essential therefore that the health and social care systems including third sector specialist providers such as Sue Ryder, work together seamlessly.

“Whilst these guidelines begin to address the changes needed to enable joined up palliative care provision, staff and financial resourcing remain enormous challenges. 

“Without long-term sustainable Government funding and a sufficient workforce, these guidelines will make little difference for terminally ill patients."

So what next?

The progress that has been made demonstrates what can be achieved when this issue is properly prioritised. There is now widespread recognition that high quality coordinated end of life care is important, as reflected in the Government’s ‘Our Commitment to you for end of life care’, published in 2016.

Sue Ryder will continue to make the case for better care and support for people at the end of their life, influencing policy by providing evidence, gathered from our own experience of providing palliative services, of what needs to improve.

Above all, we will lead by example by delivering the highest quality of patient safety and clinical effectiveness, whilst ensuring the highest level of compassionate care.

More information

Find out about our policy and public affairs work.

Image of Niamh Buckingham

Policy and Public Affairs Officer

Niamh Buckingham

Niamh is Sue Ryder's Policy and Public Affairs Officer.