Search the hub

Good end of life care depends on good communication. When patients and families receive clear, honest and timely information, they are better able to face what lies ahead. When communication breaks down, the consequences can last a lifetime.Since 2020, the Parliamentary and Health Service Ombudsman (PHSO) have investigated complaints about palliative and end of life care services across England. They found that communication is the most common failing - patients not told their diagnosis, families kept in the dark, and vital information lost when people move between services.This PHSO report draw on the experiences of families and clinicians to set out where communication most often falls short and what needs to change.  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.  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.  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. 

Holderness Health recently won the Regional NHS Excellence Award in the Quality Improvement category for the work they have been doing to support their palliative patients. Recognising that you only get one chance to do this right for palliative patients, they have introduced a number of improvements to help patients and their families at the most difficult times of their lives. Embracing a whole practice approach, Holderness Health have a working group with representatives from key areas of the practice who can quickly respond to a query or support a patient or family member to get what they need, when they need it. The introduction of their 'Gold Line', which is a dedicated number that is prioritised above other calls, means patients can get through to them quickly when they need to and can be reassured that they can reach out to someone for help. For the team, this identifies that the caller is a 'Gold' call so the staff member knows just how important the call is. If the team member cannot help with the query, they will find somebody that can. They provide a Gold pack available for patients, that provides some useful information about ours and other services, including contact numbers. There’s also some information on advanced care planning, when and if they want to discuss this. Find out more about the work they are doing from their website link below.

Maintaining meaningful contact with family and friends is essential for the health and wellbeing of people in care settings. Following the COVID-19 pandemic, the Department of Health and Social Care (DHSC) introduced Regulation 9A, a new Care Quality Commission (CQC) fundamental standard on visiting and accompanying in care homes, hospitals, and hospices. This regulation came into force in April 2024 and aims to ensure that: people in care homes, hospitals or hospices can receive visits from people they want to see care home residents are not discouraged from taking visits out of the home people attending outpatient appointment can be accompanied by a family member, friend or supporter if they would like to be. The Department of Health and Social Care (DHSC) has conducted a post-implementation review to assess the effectiveness of the regulation, gathering evidence from individuals, professionals, organisations and advocacy groups. The call for evidence provided vital information which has informed the overall review outcome. The review found strong consensus that visiting and accompanying are vital for wellbeing, trust and recovery, and that restrictions can cause distress and harm. While Regulation 9A has helped to clarify expectations, reinforce good practice and provided legislative protection for visiting and accompanying, the review found mixed views on its effectiveness in practice. DHSC has identified 6 important areas for development: data awareness and understanding decision making processes communication of restrictions by providers distinction between ‘visitor’ and ‘care supporter’ monitoring and enforcement. The outcome report sets out the findings of the review and the work DHSC will take forward to address these gaps. This work aims to ensure Regulation 9A is more effective and support a change in culture and practice to embed Regulation 9A in health and care settings. This is vital to ensuring that the rights of people in health and care settings to see their loved ones are upheld consistently and transparently, supporting person-centred care and meaningful connections.

Each year over 600,000 people die in the United Kingdom and many of these deaths occur in hospital, despite the majority of people saying that they would prefer not to die there. Approximately 70% of people die from long-term health conditions that often follow a predictable course, with death anticipated well in advance of the event. The annual number of deaths in the United Kingdom is predicted to rise to 736,000 by mid-2035. Therefore, the provision of care at the end of life must meet the needs of the population. NCEPOD reviewed the quality of care provided towards the end of life for adults with a diagnosis of dementia, heart failure, lung cancer or liver disease and have made a number of recommendations. Recommendations Ensure that patients with advanced chronic disease have access to palliative care alongside disease modifying treatment (parallel planning) to improve symptom control and quality of life. Normalise conversations about palliative/end of life care, advance care plans, death and dying. As a trigger to introduce a conversation which includes the patient and their family/carers, consider: The surprise question “Would you be surprised if this patient died within the next 12 months?” This can be used across all healthcare settings; and/or recurrent hospital admission of patients with advanced chronic disease. Ensure all patients with an advanced chronic disease are allocated a named care co-ordinator. Provide specialist palliative care services in hospitals and in the community, to ensure all patients, including those with non-malignant diseases receive the palliative care they need. Train patient-facing healthcare staff in palliative and end of life care. This training should be included in: undergraduate and postgraduate education; and tegular training for patient-facing healthcare staff. Ensure that existing advance care plans are shared between all providers involved in a patient’s care. Raise public awareness to increase the number of people with a registered health and welfare lasting power of attorney (LPA) well before it is needed. .