End of life care could be improved for up to 355,000 people a year in England, according to a report published today by the Parliamentary and Health Service Ombudsman.
The report 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 Parliamentary and Health Service Ombudsman makes final decisions on complaints about the NHS in England, including where there is a dispute about what happened. The Ombudsman service identified a range of issues with end of life care from its casework.
The insight from its casework revealed:
- 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 Ombudsman service looked at investigations it had completed about end of life care - the care and treatment someone has received in the last 12 months of their life – to highlight where things are going wrong to help ensure improvements are made. It looked at complaints it had investigated in end of life care, up and down the country, across the NHS, from GP practices to hospitals and mental health trusts, to identify the issues it sees the most often.
The report includes summaries of cases the Ombudsman service has investigated about end of life care. They include:
A 74-year-old cancer patient who spent his last days in avoidable pain. He was subjected to 14 unnecessary attempts to reinsert a drip, which caused him further pain and discomfort in his final hours.
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 the on-call doctors did not respond to a request to review his pain medication, and this issue was never escalated to senior staff.
The family of a 67-year-old man who discovered he had terminal cancer after reading his hospital discharge note.
A family who watched their loved one suffer because the palliative care team were 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.
Parliamentary and Health Service Ombudsman Julie 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 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.
Notes to editors
- For more information please contact senior press officer Marina Soteriou on 0300 061 4996 or email marina.soteriou@ombudsman.org.uk
- The Parliamentary and Health Service Ombudsman has defined end of life care as care and treatment someone has received in the last 12 months of their life. This is in line with the definition used by the General Medical Council and the National Council for Palliative Care.
- Between January 2011 and the end of April 2015, the Parliamentary and Health Service Ombudsman investigated 265 complaints about end of life care. Of these 265 complaints, it upheld or partly upheld 136.
- Every year, approximately half a million people die in England. For three quarters of people, death is not sudden, but is expected. This means there is the potential to improve the experience of care in the last year and months of life for approximately 335,000 people a year. These statistics are taken from NHS England's report Actions for End of Life Care, published in November 2014.
- The cases highlighted in the report are anonymised, including the NHS England trusts and the GP practices. The purpose of the report is to share insight and not to apportion blame.
- We look into complaints where an individual believes there has been injustice or hardship as a result of a failure in service or poor administration and, that has not been put right.
- The cases looked at for the report included upheld and partly upheld investigations of complaints the Ombudsman service had investigated about end of life care.
- Around 50 per cent of the end of life care complaints investigated by the Ombudsman service are not upheld. So far this year (January to end of April 2015), it completed 42 investigations into complaints about end of life care. Of these 42 investigations, 22 were upheld or partly upheld.
Additional quotes
Chief Executive of Marie Curie, Dr Jane Collins, 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.'
Chief Inspector of Hospitals at the Care Quality Commission, Professor Sir Mike Richards, said:
The PHSO's report Dying without dignity is timely to understand what can go wrong when people do not receive safe, effective and compassionate care at the end of their life, and in identifying learning from these examples of poor care.
'During our inspections, we have found some examples of excellent end of life care where the dying person received individual care based on their needs, delivered with compassion and sensitivity by health and care professionals. This needs to become the standard across all health and care services.
'However, the Care Quality Commission (CQC) has also found instances where end of life care has not been given high enough priority within a trust and where there has been poor communication between staff and the dying person and their family and inadequate planning. The five priorities for care of the dying person, launched last year, must be fully embraced to make a real difference to the quality of care for people at the end of their life.
'The PHSO's findings highlight some of the issues we will focus on in our thematic review of the inequalities and variation of end of life care. The CQC is committed to ensuring the highest quality of end of life care, and we will continue to highlight those services which are not providing adequate care so that improvements can be made.'
Chief Executive of the National Council for Palliative Care, 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.'
Immediate Past President of the Association for Palliative Medicine of Great Britain and Ireland, Dr David Brooks, said:
This important report adds to the body of evidence that says there is still work to be done to make palliative and end of life care a high enough priority for healthcare staff and organisations. We know good care can and does happen and many people are helped to live their last days and weeks in comfort and dignity by teams who care. That is why it is so tragic to read these cases where care has been so poor, often for the want of taking time to visit, time to listen, time to recognise, time to communicate and making referrals to palliative care teams in time for them to provide much needed support and care.'