Too many people dying without dignity, health ombudsman warns

20 May 2015
The National Council for Palliative Care (NCPC), lead charity of Dying Matters, has called a report into poor end of life care in the NHS "absolutely heart-breaking".

The report, by the Parliamentary and Health Service Ombudsman, highlights "tragic" cases where people’s suffering as they approached death could have been avoided or lessened with the right care and treatment. In one instance, a 74-year-old man suffered 14 painful attempts to have a drip reinserted during his final hours.

The watchdog investigated more than 300 complaints into end of life care, upholding the majority of them. 

The report, Dying Without Dignity, reveals many instances of poor communication leading to families losing the chance to say goodbye to their loved ones; along with poor pain management; poor planning, leading to uncoordinated care; and inadequate out-of-hours services.

The report includes summaries of cases the Ombudsman has investigated about end of life care. They include: 

  • A mother who 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 investigation found that he experienced unnecessary pain and distress for more than 11 hours because on-call doctors failed to respond to a request to review his pain medication.
  • The family of a 67-year-old man who only discovered he had terminal cancer when they read his hospital discharge note.
  • A family who watched their loved one suffer because the palliative care team was not available to help control the woman’s distressing symptoms in the last hours of her life. The 56-year-old woman had epilepsy and suffered a cardiac arrest.
  • A terminally ill, 82-year old woman who was denied her wish to die at home because of poor care planning. 

NCPC and Dying Matters Chief Executive Claire Henry said: "The NHS was set up to care for people from cradle to grave, but as this important report finds we are hearing yet again that too many dying people are being failed at the very time that they are at their most vulnerable. 

"It’s absolutely heartbreaking to hear of tragic cases where people have suffered unnecessarily because they were not given the right care and support when they needed it. We only have one chance to get care right for people who are dying, and we agree with the Ombudsman that end of life care should be seen as a core priority throughout the NHS. The type of failings identified in this report are completely unacceptable and must never be allowed to happen again.”

Parliamentary and Health Service Ombudsman Julie Mellor commented: "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."

Marie Curie Chief Executive Dr Jane Collins described the report as a challenge to the new government. She said: "Dying without dignity is a harrowing read. It provides a stark reminder of what happens to people with a terminal illness when they are failed by staff without adequate training and let-down by a system that struggles to provide effective support outside normal working hours. The experiences highlighted show the devastating impact that poor care can have, not just on patients but also their families, long after their loved one has died.

"The challenge for the new government is clear – everyone with a terminal illness deserves access to high quality, compassionate care, and the opportunity to spend their last months and weeks at home with their families."

Every year, approximately half a million people die in England and for three-quarters of them, death is not sudden but is expected. The report identifies six key themes that the Ombudsman service regularly sees in its end of life care casework. These are:

  • 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

The Parliamentary and Health Service Ombudsman makes final decisions on disputes about complaints between individuals and the NHS in England, and UK government departments and their agencies. 

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