- Good communication is essential to delivering high-quality, compassionate end of life care, says new Ombudsman report.
- Government is urged to prioritise end of life care as part of its 10 Year Plan reforms by prioritising it in the roll out for a Single Patient Record and via training to support professionals to have critical conversations about patients’ prognosis and wishes.
- One case involves a man who was not informed for a month after it was confirmed by tests that his cancer had spread. He found out accidentally and died two months later.
Patients nearing end of life are being failed by poor, unclear communication that compromises care and compounds grief, according to a new report by England’s Health Ombudsman.
The Parliamentary and Health Service Ombudsman (PHSO) is urging the Government to prioritise improvements to end of life care as part of its NHS reforms.
The report, Conversations that matter most: improving communication in end of life care, highlights widespread failings in the way professionals working in NHS end of life care communicate with patients, families and carers, and between teams and care settings.
In one case, a Trust failed to clearly and promptly inform a man that his cancer had spread and was terminal. He found out by accident from his GP.
The Ombudsman’s newly published five-year strategy has committed to improving communication in public services as a way of rebuilding trust between the citizen and state. Too often, patients and families are not listened to or communicated with clearly. When the patient voice is not heard, opportunities to resolve issues early are lost, avoidable harm can be repeated, and complaints become harder to resolve and learn from.
Ombudsman Paula Sussex CBE said,
“For more than a decade, we have highlighted problems with end of life communication. But disturbingly, too many people are still being let down. At their most vulnerable moments, patients and families should be able to rely on care that is clinically effective, compassionate and honest.
“However, our report shows poor communication is causing avoidable distress for those receiving care, their loved ones and the professionals caring for them. Listening to its patients is one of the most powerful tools the NHS has to prevent harm. Patient voice must be at the heart of improvement.
“There needs to be better information-sharing, record-keeping, and training that gives staff the confidence and support to have timely, honest conversations about prognosis and people’s wishes. As the Government pushes forward with its plans to develop a Single Patient Record across the NHS, we urge them to prioritise end of life care as an area for roll out.
“Compassionate communication should be a fundamental part of quality care and it needs to be led by the profession themselves. Patients and families deserve care that is clear, coordinated and empathetic, while professionals working deserve systems that support them to deliver it.”
Communication failures remain the most recurring theme in Ombudsman investigations. We have repeatedly raised concerns about communication in end of life care, including in our 2015 report, Dying without dignity, and our 2024 report on DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) decisions.
Casework analysed for this new report shows patients, and their families are often left ill-informed about their prognosis, with poor discussions about treatment, care preferences, where they wish to die and who they want involved in decisions about their care.
Families are often not told clearly or early enough that their loved one is deteriorating or approaching the end of life, further adding to their grief after their relative has died.
End of life care can be complex and involve multiple teams and settings such as wards, hospices and care homes. Poor communication between these teams affects continuity of care, delays decision-making and leaves patients and families constantly having to chase for updates.
The Ombudsman spoke to clinicians to understand more about the barriers to good communication. Many described the emotional burden of difficult end of life conversations and the challenges of communicating effectively when faced with time pressures, limited support and access to the right information.
One case shared in the report involves a man who visited his GP in March 2021 with symptoms of rapid weight loss and abdominal pain and was referred to hospital. A biopsy and scan revealed he had colorectal cancer that had spread to his liver.
The man was not informed the cancer had spread to his liver by hospital clinicians. He found out when his GP, assuming the patient had been informed by the hospital Trust, mentioned it during an appointment in April to discuss pain management.
The Trust did not directly tell him that his cancer had spread for a month after the tests had confirmed it. He died in June. Because of the lack of clarity about his prognosis and delay in informing him, he was denied additional time to make end of life arrangements.
The man’s wife said,
“What stays with me most is how alone and powerless we felt. We weren’t kept informed, we didn’t understand what was happening, and we lost precious time that we can never get back. It was devastating for my husband, and for those of us who loved him, it has left a lasting pain, guilt and loss of trust that never really goes away. That my husband had to suffer will stay with me for the rest of my life.
“What we needed was simple, to be told what was going on, for the teams to speak to each other, and for someone to act sooner. It doesn’t cost anything to talk to families and let them know what is happening, but that basic communication was missing. At the end of life, people only get one chance to receive the right care and support, and no family should be left feeling this helpless. The NHS failed us.”
Dr Sarah Holmes, Chief Medical Officer at Marie Curie and consultant in palliative medicine, said:
“Deeply troubling but not surprising, this report shows why too many families are left haunted by a loved one’s death. It highlights fragmented care, overstretched staff, and missed chances to recognise — or tell someone — they are dying.
“That is why Marie Curie is partnering with the NHS to embed teams in emergency departments and GP practices — identifying people earlier, supporting staff, and helping families get care plans and conversations sooner.
“These services must be rolled out nationwide. The UK Government’s Palliative and End of Life Care Modern Service Framework could help fix a broken system — but only with a transformation fund to drive joined-up care.
“Change is long overdue. Families saying goodbye do not get a second chance — and successive governments have had too many.”
The importance of improving communication at end of life care extends beyond the NHS. The Local Government and Social Care Ombudsman will shortly publish a report examining end of life care in the social care sector, highlighting the importance of person-centred care, joined up services and clear, compassionate communication.
This reinforces the need for improvements across health and social care to ensure people approaching the end of their life, and those close to them, receive coordinated, dignified care.