Recommendations
As the Ombudsman, we use learning from complaints to drive improvement in public services. In this report, we have reflected on the experiences of patients and their families, carers and friends to better understand the ways in which communication can fail during end of life care, and what needs to change. We have also drawn on insights from clinicians about the system changes required to make a difference.
To inform our recommendations, we shared our findings with a range of stakeholders across the palliative and end of life care sector, including NHS bodies, charities, healthcare professionals and academics. Having reflected on this evidence, we have identified three priority areas for action that respond to the issues we see most often in our casework. We set out recommendations for each area.
Confident, skilled, compassionate communication with patients and families at the right time
We have heard consistently that conversations about the end of life often happen too late. This can leave acute care teams needing to play ‘catch-up’ when a patient deteriorates, managing shock and anger and supporting decision-making under significant time pressure. We know these are difficult conversations to approach, and they require a confident, skilled and well-supported workforce. There should be a shared sense of responsibility across the wider generalist workforce for preparing patients and families for dying.
We strongly welcome the commitment in the neighbourhood health framework to earlier identify patients approaching the end of life. To be meaningful, this must go hand in hand with an increased willingness and confidence to begin complex conversations with patients and families. We know there is more to do to make sure clinicians are resourced and supported to build these skills.
The most recent National Audit of Care at the End of Life (NACEL) survey found that only 62% of staff had received any training in end of life care over the past three years. The survey team noted that this figure is likely to be an overestimate, and it is staff more interested in end of life care who tend to respond to the survey. It is vital that a clear, sustained plan to address communication skills and confidence forms part of any efforts to improve end of life care services.
Recommendation 1. The Modern Service Framework should include a detailed strategy to address skills and confidence gaps in communication.
- The Modern Service Framework should include a 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.
- Clinical education should set the expectation that skilled communication about the end of life is an essential, invaluable part of all healthcare roles. We echo the recommendation of the Commission on Palliative and End-of-Life Care that training on palliative and end of life care should be a mandatory part of undergraduate medical education.
- Mandatory training at postgraduate level in provider settings should include:
- psychologically informed elements such as understanding common patterns of distress at the end of life, and core skills for responding to and understanding clinicians’ own anxiety so they are able to stay present and sit with distress
- skills practice with feedback and rehearsal of challenging scenarios.
- To be effective, training must be accompanied by ongoing ‘on-the-job’ support. This needs to be understood as an important part of implementation, not an optional add-on to training. For example, providers should consider developing clinical supervision structures that support professionals to increase their skills and confidence while maintaining their own resilience and wellbeing. This reflects the fact that embedding skills into practice, and seeing them valued in the working environment, is important for consistent delivery.
Clear outcome measurement that includes patient and family voices
To improve communication around end of life care, we must be able to track the impact of interventions on the experiences of patients and families. At the local level, complaints provide important feedback that can help providers to understand their performance and prioritise further training and investment. Our NHS Complaint Standards set out how complaints can be valued as a vital part of learning. We see good examples of individual trusts that are using patient stories for training and reflection and regularly bringing these to Board discussions.
But there also needs to be better understanding at the national level of how patients and families are experiencing end of life care.
We welcome that the interim update from the Minister of State for Care on the development of the Modern Service Framework recognises the importance of accountability and of clear outcome and performance metrics to assess improvements in the delivery of end of life care.
Recommendation 2. The Modern Service Framework should develop clear outcome measures to assess the performance of end of life care services, centred on patient and family experience.
- Outcome measures should include an assessment of how effectively services communicate with patients and those close to them.
- One consideration in this is the role of large-scale surveys that ask bereaved people about experiences of end of life care for their loved one. The National Audit of Care at the End of Life (NACEL) is extremely valuable as a national comparative audit of the quality and outcomes of care experienced by the dying person. But it covers only the final hospital admission rather than experiences across all settings and at earlier points in the care journey.
- The Modern Service Framework should consider options for a bereavement survey that asks for feedback about the experience of all deaths, including deaths at home, in care homes and in hospices, in addition to those in hospitals. This will be particularly important given the ambitions around shifting care, including end of life care, from hospitals to the community.
Effective information sharing between teams and care settings
We have seen how good care is undermined by systems that do not transfer information effectively across different teams and care settings. This is not a new problem. The first End of Life Care Strategy in 2008 noted that a lack of effective mechanisms for communicating up-to-date, sensitive information between providers presents a major barrier to delivering quality end of life care.
The 10 Year Plan for England promises a Single Patient Record, shared across the system, so that every part of the NHS has a full picture of the patient. At the time of writing, the commentary accompanying the NHS Modernisation Bill has confirmed the first pathways for the rollout of the Single Patient Record as frailty and maternity. We understand from conversations with the team developing the Single Patient Record that the programme is still in its early development. But as it develops, we would like to see an urgent focus on end of life pathways as an important area for the rollout of the Single Patient Record.
Recommendation 3. Prioritise end of life care in the rollout of the Single Patient Record.
- Dying patients often move between hospitals, GPs, community palliative care teams, hospices and ambulance services. Patient information must be readily accessible across these different settings.
- The Single Patient Record must make sure that important end of life care information – including advance care plans, ReSPECT forms and DNACPR decisions – is consistently accessible and editable across all care settings.
- The Single Patient Record must build on and learn from the important work that has gone before, including the development of Electronic Palliative Care Coordination Systems (EPaCCS).
- Joined up, accessible systems are necessary, but they also depend on the quality of information that goes into them. The Single Patient Record programme must include sufficient investment in training on how patient record systems should be used on the frontline.