This report uses evidence from our casework to show how communication shapes people’s experiences of palliative and end of life care. Drawing on complaints brought to us by families, friends and carers about the care their loved one received, it highlights where communication most often falls short and identifies opportunities for learning and improvement across services.
We set out our findings across three areas:
- Communication with patients, including delayed or missed conversations about prognosis and poor discussion of preferences around family involvement.
- Communication with families and carers, including unclear discussions about poor prognosis, failure to keep families informed, inaccurate or insufficient information about diagnosis and treatment, and not listening to family concerns and wishes with compassion.
- Communication between teams and care settings, including failings in information sharing when patients transfer between services and poor coordination around care planning and discharge.
Each section combines evidence from complaints we investigated with direct testimony from families, friends and carers who told us about the communication failings and the impact this had on them. Where communication is unclear or lacks compassion, it compounds distress and shapes long-term experiences of bereavement. Conversely, families consistently highlight the difference that clear, honest and kind communication can make at a difficult time.
We also spoke to clinicians to better understand the barriers to good communication in end of life care. Clinicians highlighted a range of factors, including limited confidence in having difficult conversations at the right time and fragmented information systems. These challenges are compounded by a broader culture in which conversations about death and dying are often avoided, both in healthcare and more widely in society.
What needs to change
We welcome recent policy developments, including the introduction of a Modern Service Framework for Palliative and End-of-Life Care due later this year and commitments in the neighbourhood health framework to improving outcomes for people receiving end of life care. To deliver the ambitions set out in these plans, the importance of good communication in delivering high-quality services must be recognised.
To help us develop recommendations, we shared our findings with a range of stakeholders in the palliative and end of life care sector, including NHS bodies, charities, healthcare professionals and academics.
Our recommendations are:
The Modern Service Framework should include a detailed strategy to address skills and confidence gaps in communication
The Modern Service Framework should include a detailed, system-wide strategy to tackle longstanding gaps in confidence and skills in talking about death, dying and palliative care. This should establish communication about the end of life as a core competency across the workforce, supported by mandatory training at undergraduate and postgraduate levels. Training should include psychologically informed approaches, opportunities to practise difficult conversations, and ongoing support to help clinicians build confidence and resilience in real-world settings.
Prioritise end of life care in the rollout of the Single Patient Record.
End of life care should be a priority area for the introduction of a Single Patient Record, which aims to make sure that patient information is consistently accessible across hospitals, primary care, community services, hospices and ambulance trusts. This should include important information such as advance care plans, ReSPECT forms and DNACPR decisions, so that patients’ preferences are visible and actionable across settings. The programme must also be supported by sufficient investment in training to improve the quality and consistency of record-keeping and information sharing across the system.