A national review by the Care Quality Commission (CQC) has found that people from certain groups in society 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.
In ‘A different ending: Addressing inequalities in end of life care’, (May 2016), the CQC reports that only 67% of the 40 clinical commissioning groups (CCGs) it surveyed said that they had assessed the end of life care needs of their local populations – meaning that one in three had not. Of the 27 CCGs that had reported that they had assessed the end of life care needs of their local populations, only 18% had reported that they had commissioned specific services for at least one of the population groups considered in its review as a result – this includes 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 CQC points out that 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. This could lead to people’s wishes not being met or them not having 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 are taking an equality-led approach, the review findings raise 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.
In its national review, CQC is calling for action to make sure 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 Care Quality Commission, 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.”
Elsewhere in its report, CQC highlights that health and care staff are not always having conversations with people who have chronic progressive illnesses other than cancer – such as advanced heart disease, respiratory disease and dementia – early enough about their end of life care as it can be difficult to know whether they may be in the last year of life. This means that people are not always being given appropriate care or the opportunity to make plans and choices with their loved ones about how and where they would prefer to be cared for and die.
The 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.
