The Parliamentary and Health Service Ombudsman (PHSO) has warned that dying people and their loved ones are being “let down” by poor communication, which is “adding to their grief”. The report highlights breakdowns in communication that impact immediate patient care and lead to “severe consequences” for families.
Case of Mr O: Diagnosis Delayed by Accident
The PHSO report details the case of Mr O, a man diagnosed with bowel cancer that had spread to his liver. The hospital “failed to clearly and promptly inform” him about the spread and that it would be fatal. Instead, Mr O only discovered his terminal diagnosis because his GP “unintentionally disclosed it”. The delay “denied Mr O additional time to prepare for the end of his life”.
Mr O’s wife told the PHSO: “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.”
Families Left Unprepared and Dismissed
The report also highlights cases where families were not informed and “left unprepared”, missing the opportunity to spend meaningful time with their loved one in final days. Some families described feeling dismissed or not properly listened to. One family member said: “There were comments around the fact that I was a nuisance… It was obvious anyway, that I was not welcome.”
PHSO Paula Sussex wrote in the foreword: “When communication breaks down, the consequences can be severe, both for the quality of immediate care for the patient and the families supporting them. As we have heard so often, families carry with them guilt and upset for a lifetime about how a loved one died, adding to their grief.”
Recommendations and Government Response
The ombudsman made recommendations including better information sharing, record keeping, and training. Sussex 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.”
She added: “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 rollout.”
Expert and Official Reactions
Dr Sarah Holmes, chief medical officer at Marie Curie and consultant in palliative medicine, commented: “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.”
A Department of Health and Social Care spokesperson said: “It is unacceptable that patients and families have been let down at such a vulnerable time. This Government is committed to ensuring all patients and families receive high-quality, personalised palliative and end-of-life care. That’s why we are developing a new plan to improve services, including better communication, knowledge and skills. Through the Single Patient Record, we are bringing together patient health information in one, secure, easy-to-access place. This will help NHS staff access the information they need to provide safer, more joined-up care, including for people receiving palliative and end-of-life care.”
