National Institute for Health and Clinical Excellence (NICE)
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Action is needed to address inequalities in end of life care

Failure to recognise individuals’ needs means patients are receiving poor quality end of life care, a highly critical report by the Care Quality Commission has found.

Elderly patients are being kept in hospital for their final days despite many preferring to die at home or in a hospice, and patients diagnosed with a mental health problem or dementia are not receiving the individualised care they need, the CQC found.

NICE guidance on end of life care highlights the need for healthcare professionals to recognise when a person is entering their final days of life. The recommendations aim to support medical and social care staff so that they can provide their patients with care that is tailored to their needs and desires.

Emeritus Professor Sam Ahmedzai, chair of the independent committee of experts who developed the ‘Care of the Dying Adult’ guideline, said: "It is disappointing that this report from the CQC has exposed serious deficiencies and inequalities in end of life care across England.

“We know that looking after people who are dying can be challenging.  This is why we need to identify their individual needs so as to deliver the types and levels of care that is right for them.”

An estimated 500,000 people die every year in the UK. End of life care received national attention after the controversial Liverpool Care Pathway was found to have become a tick box exercise, which instead of improving care had led to patients not receiving adequate pain relief or hydration in their final days.

NICE guidance has sought to simplify the Liverpool Care pathway and improve care for people in their last days of life. It recognises the importance of good communication between healthcare teams and the people they are caring for, which is something the CQC is calling for after finding patients’ are still having their dying wishes ignored or refused.

Prof Ahmedzai said NICE guidance puts the patients and their family at the heart of all clinical decision making and when followed, should improve care of the dying.

He said: “The NICE guidance provides clear and compassionate recommendations, based on research evidence wherever possible. I believe it can support doctors, nurses and other healthcare professionals in providing the quality of care we would all expect in the last few days of life.  Thus the person’s preferred place of care, as well as their choices about medication, hydration and other important decisions, should be at the centre of shared decision-making. 

“If it is incorporated into regular practice, the NICE guidance can help us eradicate the weaknesses and inequalities this report has highlighted.”

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