Most of us would prefer not to be in hospital if we don’t need to, especially if we have a limited time left to live. The key phrase here is – ‘if we don’t need to’ – but need comes in so many different forms: treatment-related, symptom-related, care-related etc. Sometimes, that need can only be met – safely, efficiently and effectively – in hospital. When that happens, whether it’s a brief visit or at the very end of someone’s life, we need to be confident that our experience of treatment, care and support is as good as it can possibly be for us, as well as those who matter the most to us.
The notion that dying in hospital is always a poor outcome is too simplistic. So is the notion that dying in someone’s ‘usual place of residence’ is always a good thing. It is time to shift that focus. Wherever the person is, and at whatever the stage of illness, how can we make it as good as possible? This should be the focus.
There are many pockets of high quality care, and lots of people are working hard to improve things all the time. We need to hear more about what’s going well – not only to celebrate these successes, but also to learn, adopt and adapt, in a continuous cycle of improvement.
The Transform Programme – for end of life care in hospitals – was a great programme. It focused on 5 key enablers. Having a focus made it easier for hospitals and their staff to grasp and push forward improvements step by step. These enablers are still relevant and important:
- Advance care planning
- Sharing records in real time e.g. Electronic Palliative Care Coordinating Systems
- Recognising and managing uncertainty e.g. AMBER care bundle
- Rapid discharge to home
- Caring in the last days of life i.e. Priorities for Care of the dying person
Those of you with sharp eyes and long memory will spot that I have phrased some of these enablers slightly differently. This serves to emphasise what we are trying to achieve with each enabler, though not always using the same tool or approach used in most places. As in the ‘Ambitions for Palliative and End of Life Care: A national framework for local action‘, we need to keep focused on what we are trying to achieve, and be flexible and open to different ways of achieving the goals that matter to our patients.
We want to encourage all hospitals to push forward on integrating these enablers into daily work. You may wish to take different approaches. Some may wish to choose one enabler and systematically implement it across the hospital. Others may wish to implement all five enablers in one clinical area, then gradually across the hospital. Whatever the approach, recognition that staff must have time, training and support to implement these improvements is key. Anything that is not familiar will take a slightly longer time. Undoubtedly, it will be a bit messy for a little while. But the rewards are worth it – for the patient and those close to them obviously, but also for the staff member, the team and the hospital.
Today many hospitals and clinicians have experience of these enablers. There is a much greater level of collective knowledge – we must draw on this organisational and system memory, and help each other to improve. The route to success ‘how to’ guide was revised late last year, it provides practical advice and support for front-line clinicians and leaders for the work required to transform end of life care in acute hospitals – please do have a look at it.
The challenge to you is this – what can you do to help in your own hospital? What can be done to influence or change care, or motivate others? If you are already doing this – we’d love to hear about your initiatives and help you to share this with other colleagues.
On 17 October, we will hold a webinar for those who are interested about hospital improvement programmes. You will have the chance to:
- Find out what NHS Improvement is doing to support hospitals rated by CQC as ‘requires improvement’ or ‘inadequate’ in end of life care.
- Hear about a hospital that has integrated the core enablers in their practice.
- Get updated on two quality improvement initiatives that are being tested at the moment – ‘Building on the Best’ and ‘Living Well to the Very End’.
Please contact us at firstname.lastname@example.org if you are interested in joining our webinar. Please note only limited places are available.
Bee is Consultant in Palliative Medicine at Sir Michael Sobell House, Oxford University Hospitals NHS Foundation Trust and Associate Professor at University of Oxford, where she is also Associate Director of Clinical Studies and Fellow of Harris Manchester College.
Originally from Malaysia, Bee qualified from Trinity College Dublin in 1988, trained in general practice in Dublin, then moved into palliative medicine in Ireland, Hong Kong and the UK. She was Consultant/Senior Lecturer at Countess Mountbatten House, Southampton (1995-2003), where she became Deputy Director of Education, School of Medicine at the University. She was President of the Association for Palliative Medicine of Great Britain and Ireland (2010-13), National Clinical Lead for e-ELCA, a DH-commissioned e-learning programme for end of life care, now hosted by Health Education England, and Chair of the Topic Expert Group for the NICE Quality Standard for End of Life Care (2011). She enjoys cooking and allotment gardening for relaxation.
ee is Visiting Professor at Oxford Brookes University and University of Worcester, and Honorary Professor at Sichuan University, China. She is Head of the World Health Organisation Collaborating Centre for Palliative Care in Oxford. As NCD, she led the Leadership Alliance for the Care of Dying People and is co-chair of the National Partnership for Palliative and End of Life Care which was responsible for publishing the ‘Ambitions for Palliative and End of Life Care: a national framework for local action’ in 2015.