Introduction
Death is an inevitable part of life, but people’s experiences at the end of life vary considerably. How someone dies is shaped by the care and support they receive in their final days. This care also has a lasting impact on the family and loved ones they leave behind. Recent research published by Marie Curie found that around 170,000 people in England every year spend their final days in pain, distress or without vital support that should be available to everyone at the end of life.
Palliative and end of life care includes planning and providing support to people who are approaching the end of their life, as well as to their families and carers. It involves taking account of people’s needs and wishes, including where they would like to receive care and where they would like to die. This is to enable them to live as well as possible in their final days and allow them to die with dignity.
Palliative and end of life care in England is delivered by professionals and services across the health and social care system, including NHS staff, social care organisations and the voluntary sector. We know that the majority work with skill, compassion and commitment to deliver high‑quality end of life care, and there are many examples of good practice. But it is evident that these services are under significant pressure. Numerous reports in recent years have called on the Government to address longstanding issues relating to workforce capacity, resources and funding for hospices, variability in local commissioning and provision of services.
The debate around the Terminally Ill Adults (End of Life) Bill 2024 (and its reintroduction in the current session) has brought renewed political and public attention to the provision of end of life care. Recent policy developments have signalled the Government’s commitment to addressing the challenges facing the sector. A Modern Service Framework for Palliative and End-of-Life Care in England, led by the Minister of State for Care, is currently in development. It is intended to improve access, quality and the sustainability of services.
The 10 Year Health Plan for England outlines an ambition to shift more care from hospitals to the community, which has major implications for the provision of palliative and end of life care as it is delivered across primary care, community services, care homes and patients’ own homes. The recent neighbourhood health framework policy paper has set out a clear commitment to improving outcomes for people receiving end of life care, including better identification of people approaching the end of life. It aims to increase by 10% the number of people identified by March 2029.
Communication in palliative and end of life care
Our casework evidence tells us that palliative and end of life care services too often provide care that falls short of what is expected.
Over a decade ago, we published our report ‘Dying without dignity’ on complaints about end of life care. We set out the consistent themes we were seeing in our casework, including issues with communication, care planning and symptom control. More recently, we published ‘End of life care: improving “do not attempt CPR” conversations for everyone’. This report looked at complaints involving communication about clinical decisions not to provide cardiopulmonary resuscitation (CPR). We called for urgent improvements to the process and communication surrounding ‘do not attempt CPR’ decisions, so doctors, patients and their loved ones can make informed choices about their care.
The continued high number of complaints we receive about palliative and end of life care shows that there is a lack of progress in improving people’s experiences of using these services. Analysis of upheld cases since 2020 shows that communication is the most common failing we see.
This is also an ongoing concern reflected in recent reports. The Commission on Palliative and End-of-Life Care found that patients, families and carers identified communication and planning as the top priority areas for improvement. It recommended building confidence across the wider workforce so that more staff are equipped to communicate with skill, honesty and sensitivity. Similarly, the Health and Social Care Committee’s Expert Panel on palliative care in England highlighted the importance of clear information and effective information sharing, drawing on evidence from people with lived experience of care at the end of life.
How we developed this report
We analysed the evidence from our investigations into adult end of life and palliative care services since 2020 to identify common themes. We also spoke to families and friends who complained to us about the care their loved ones received. They shared how communication failures affected their experiences.
In addition, we engaged with healthcare professionals from our network of clinical advisers to understand the barriers they face in communicating effectively.
Our findings are set out across three areas:
- communication with patients
- communication with families, friends and carers
- communication between teams and across care settings.
Each section includes case studies from our investigations, supported by insights from clinicians and testimony from people who brought their complaints to us. Although we also found clinical and complaint-handling failings in most of these investigations, the case studies shared here focus specifically on communication failings.