Action needed to ensure everyone at the end of their lives receives personalised care, says CQC

People from certain groups in society – including those with mental ill health or learning disabilities – are experiencing poorer quality care at the end of their lives than others because providers and commissioners do not always understand or fully consider their specific needs, a national review by the Care Quality Commission (CQC) has found. 

In ‘A different ending: Addressing inequalities in end of life care’, the CQC reported that only 67% (27) of the 40 clinical commissioning groups (CCGs) it surveyed said that they had assessed the end of life care needs of their local populations.

Of the 27 CCGs that reported they had assessed the end of life care needs of their local populations, only 18% (7) had reported that they had commissioned specific services for at least one of the population groups considered in its review as a result – including people whose social circumstances make them vulnerable, older people, people with dementia, a learning disability, a mental health problem, or a chronic progressive illness other than cancer.

The impact of this could be that local health and care services are not fully equipped or ready to help these particular groups of people in their areas to get truly personalised care at the end of their lives. 

As a result, this may mean people’s wishes are not being met or they do not have the full range of options of where they would prefer to be cared for and die available to them. For example, an older person may be admitted to hospital in the last days of their life when they would prefer to die at home.

While in some areas commissioners and providers do take an equality-led approach, the CQC’s review raises concerns that some might not be fulfilling their duties under the Equality Act 2010, which states that all public bodies have a legal duty to consider the needs of a range of equality groups when carrying out their day-to-day work.

The CQC is calling for action to ensure everyone has the same access to high quality, personalised care at the end of their lives, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances.

Professor Steve Field, chief inspector of general practice at the CQC, said: "While we know there are hospitals, GPs, care homes, hospices and community services across the country that are providing good and even outstanding care to people at the end of their lives, one person that does not get this is one person too many.

“Family members that we spoke to told us they felt marginalised because their loved ones did not have the same level of access to services, or felt like they were treated differently to other people receiving end of life care.

"A person’s diagnosis, age, ethnic background or social circumstances should not affect the quality of care they receive at any point, but certainly not at the end of their lives. What is important is that everyone receives care based on their individual needs, delivered with compassion and sensitivity by staff with the right skills, and that there is regular and effective communication between staff and the dying person and their family.

“We found that where commissioners and services are taking an equality-led approach, responding to individuals’ needs, people receive better care.

“We are committed to encouraging the improvements in services that are needed so that everyone receives the high-quality and personalised care they deserve at the end of their lives.” 

CQC advises that early conversations should happen between staff and people to help them make choices about their care at the appropriate time, and that there should be better coordination of services for those with multiple conditions or complex needs.

Professor Bee Wee, NHS England’s national clinical director for end of life care, said: “International comparisons rate the UK as the best country in the world for end of life care, and a recent survey again found that three quarters of bereaved people rated the overall quality of care for their relative as good or better. But there is clearly more that can be done to ensure that all patients experience good quality care, regardless of their age, gender, race, condition or other factor. 

“Working with national partners, we will use these findings to inform our ongoing work to reduce inequalities in access to care, and encourage CCGs to study the findings to understand and address variation in their local areas.”

Don Redding, director of policy at National Voices, said: “The last months and weeks of life are when health and care services spend most time and money on us. Yet we know there are many gaps in coordinating the numerous services that should be caring for people. 

“Health and care services need specific strategies to make sure they reach communities that are currently not receiving high quality care at the end of their lives.

“We want to see person-centred coordinated care for everyone, which means services focusing on the things that matter most to people. There is no more important time to achieve this than near the end of life. The CQC should be commended for working to apply personalised coordinated care and for helping others to achieve it.”