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People ‘dying without dignity’ and in ‘unnecessary pain’ says Ombudsman

End-of-life care needs to be improved for up to 355,000 people a year in England, a new report shows.

‘Dying without dignity’, by the Parliamentary and Health Service Ombudsman (PHSO), Julie Mellor, came about after she and her team examined complaints they had investigated in end-of-life care across the NHS, from GP practices to hospitals and mental health trusts.

It highlights tragic cases where people's suffering could have been avoided or lessened with the right care and treatment, as they approached the end of their lives.

The Ombudsman service identified a range of issues with end-of-life care from its casework, including:

• Poor communication with families losing the chance to say goodbye to their loved ones,
• Poor planning leading to uncoordinated care,
• Inadequate out-of-hours services and
• Poor pain management meaning that people spend their last days in pain when it can be avoided.

The report details a number of cases where dying patients and relatives went through unnecessary suffering. In one instance a 74-year-old cancer patient was subjected to 14 unnecessary attempts to reinsert a drip, which caused him further pain and discomfort in his final hours.

In another a mother was forced to call an A&E doctor to administer more pain relief to her 29-year-old son, who was in a hospital's palliative care unit. The PHSO investigation found that he experienced unnecessary pain and distress for more than 11 hours because the on-call doctors did not respond to a request to review his pain medication, and this issue was never escalated to senior staff.

In one shocking instance the report tells of how the family of a 67-year-old man discovered he had terminal cancer after getting home and his daughter read his hospital discharge note.

“It was I who read the discharge note first and I was devastated,” the daughter is quoted as saying in the report. “I had to decipher the medical terms ... before daring to tell the rest of the family including my father this awful news.”

Mellor said: “Our casework shows that too many people are dying without dignity. This report highlights the impact on patients and their loved ones, when the care and treatment of people nearing the end of their lives, falls short.

“Our investigations have found that patients have spent their last days in unnecessary pain, people have wrongly been denied their wish to die at home and that poor communication between NHS staff and families has meant that people were unable to say goodbye to their loved ones.

“We are publishing this insight so the NHS can consider the lessons to help prevent similar cases from happening again.”

The report says that “end-of-life care is, sadly, a recurring and consistent theme in our casework”. It identifies six key themes that the Ombudsman service regularly sees in its end-of-life care casework:

• Not recognising that people are dying or responding to their needs
• Poor symptom control
• Poor communication
• Inadequate out-of-hours services
• Poor care planning
• Delays in diagnosis and referrals for treatment

Dr Peter Carter, general secretary of the Royal College of Nursing, described the stories in the report as “heart-breaking”, adding that too many people are experiencing needless suffering.

“The truly sad thing is that there are many things we can do to make people’s experience at the end of their lives better,” he said. “Expertise exists to help control pain, and to manage distressing symptoms, and people should be able to access that expert care when they need it.

“Communication, particularly the shared recognition that someone is approaching the end of their life, is key and requires all staff to be trained in delivering end-of-life care, whether it is something they will do rarely or every day.”

The chief inspector of hospitals at the CQC, Prof Sir Mike Richards, said the organisation had seen examples of excellent end-of-life care, but “has also found instances where end-of-life care has not been given high enough priority within a trust”.

A Department of Health spokesman said: "These are appalling cases – everyone deserves good quality care at the end of their lives.

"The five priorities for end-of-life care we brought in emphasise that doctors and nurses must involve patients and their families in decisions about their care, regularly review their treatment and share patients' choices to make sure their wishes are respected.

"NHS England is working on making these priorities a reality for everyone who needs end-of-life care."

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