Dying patients and their loved ones are being “let down” by inadequate communication, a failing that is “adding to their grief,” an ombudsman has warned.
The Parliamentary and Health Service Ombudsman (PHSO) issued a stark warning, emphasising that such breakdowns can not only impact a patient’s immediate care but also lead to “severe consequences” for their families, exacerbating an already difficult time.
A new PHSO report highlighted a particularly distressing case where one man, referred to as Mr O, discovered he was dying “by accident”.
An NHS trust had failed to inform him that his bowel cancer, which had spread to his liver, was terminal. The hospital, according to the PHSO, “failed to clearly and promptly inform” Mr O about the disease’s spread and its fatal nature.
Instead, he only learned of his terminal diagnosis when his GP “unintentionally disclosed it”.
The PHSO said this delay “denied Mr O additional time to prepare for the end of his life”.
The man’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.
“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.”
The report also highlights cases of families not being informed and “left unprepared”.
The authors add: “It meant families missed the opportunity to spend meaningful time with their loved one in their final days.”
Meanwhile, families also described feeling dismissed or not properly listened to.
One family member of a dying person told the PHSO: “There were comments around the fact that I was a nuisance… It was obvious anyway, that I was not welcome.”
Writing the forward of the report, the PHSO Paula Sussex said: “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.”
The Ombudsman made a series of recommendations to improve communication to help dying people and their loved ones, including better information sharing, record keeping and training.
Ms 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 roll out.”
Commenting, 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.”
The Department of Health and Social Care has been approached for comment.
