Since taking up the post of Ombudsman last summer, I have been clear that alongside our core function to provide individual redress, the mission of my Office must be an ambitious one: improving public services and rebuilding trust between the state and citizens. The experiences people share with us through complaints give us insight into where things are going wrong in organisations and systems. We have a clear duty to use this information to drive improvements and prevent the same issues from happening again.
As I have talked to our caseworkers, our clinical advisers and stakeholders in the health sector, I have been struck by how often a breakdown in communication sits at the heart of the complaints we receive. This is why, when developing our new five-year strategy, we knew that one of our priority areas must be supporting public services to communicate in an open, empathetic and effective way.
Nowhere is strong communication more important than in the provision of end of life care. When systems and teams communicate well, patients are more likely to receive the right care at the right time and clinicians are better equipped to navigate the complexities of moving between different care settings. When patients and families are given clear explanations, and when crucial conversations happen early and with sensitivity, they feel supported and better equipped to face the next steps, however difficult they may be.
When communication breaks down, the consequences can be severe, both for the quality of immediate care for the patient and the families supporting them. As we have heard so often, families carry with them guilt and upset for a lifetime about how a loved one died, adding to their grief. They tell us about how their trust in the NHS has been eroded and they find it hard to return to places where their loved one died. Clinicians too carry a heavy emotional burden when care at end of life falls short.
In this report, we draw on the experiences of families and clinicians to better define how communication can fail during end of life care, and what is required to drive improvement. I am hugely grateful to everyone who has taken time to speak with us about their own experiences.
Our recommendations focus on three areas:
- Confident, skilled, compassionate communication with patients and families at the right time. Gaps in crucial communication skills have been recognised for too long without being fully addressed. We now need to see sustained and consistent action to remove barriers to proactive, compassionate conversations about end of life care.
- Clear outcome measurement that includes patient and family voices. The assessment of whether end of life care is improving must be informed by how it is actually experienced by patients and families.
- Effective information sharing between teams and care settings. We must get the basics right so that patient information is readily accessible across different settings. As the NHS works to shift care from hospitals to the community, this longstanding policy aim becomes increasingly urgent.
It is a critical time for the development of end of life care, with the Modern Service Framework for Palliative and End-of-Life Care due to be published later this year. This report underlines the urgent need to tackle persistent communication failures that continue to undermine the experience of patients and families at the time that matters most.
Paula Sussex CBE, Ombudsman