Report finds lack of dignity in end of life care

The Parliamentary and Health Services Ombudsman has today published a report on the state of end-of-life care in England. The report, titled ‘Dying without dignity’ expresses concerns around end-of-life care, detailing “tragic” cases where people’s suffering could have been avoided or lessened.

The Ombudsman is the independent organisation responsible for investigating complaints about the NHS and it has drawn on real life cases in the creation of the report. In the past four years the Ombudsman has investigated 265 complaints concerning end-of-life care and just over half of them have been upheld. The report features 12 cases that illustrate the issues it regularly comes across in its casework on end-of-life care.

The report identifies some key themes including:

Not recognising that people are dying, and not responding to their needs;
Poor symptom control;
Poor communication;
Inadequate out-of-hours services;
Poor care planning; and
Delays in diagnosis and referrals for treatment.
The Report states the findings are intended to inform “new aims for better end of life care in the NHS in future. Our casework supports the work of the Ambitions for End of Life Care Partnership. We expect the members of the Partnership to make sure the findings in this report lead the way, so that standards and quality of end of life care are improved, and unacceptable variations in care are reduced.”

Ombudsman Julie Mellor said the report made “very harrowing reading” adding that “our case work shows that too many people are dying without dignity. 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.”

A Department of Health spokesman said “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.”

Prof Sir Mike Richards, the Chief Inspector of Hospitals at CQC, said CQC had seen examples of both excellent end-of life care and instances where it had not been given enough priority. He confirmed that CQC would continue to highlight services that were failing in this respect.

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