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.
Local services unable to deliver truly personalised end of life care
In “A different ending: Addressing inequalities in end of life care”, released on Monday 9 May 2016, 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.
Also, CQC found that only 18% of the 40 CCGs had commissioned specific services for at least one of the population groups considered in its review – 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 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.
Action required to raise standards nationally
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.
"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.”
The importance of clear communication
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.
Although CQC found some examples of good and outstanding practice – such as where training projects had been set up to develop the skills of care home staff, and where local services had been developed to meet the end of life care needs of specific groups – it has concluded that more needs to be done to provide truly personalised end of life care for all and to improve communication between healthcare staff and those who are dying, so that individual needs are always identified and addressed.
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.
Need for "real change"
Claire Henry, MBE, Chief Executive of National Council for Palliative Care & Dying Matters Coalition, said: “We are glad to have helped the CQC with this report, which demonstrates the importance of making good end of life care priority for everyone. To do so, we need to understand people’s needs and priorities, and shouldn’t make assumptions about anyone. I hope this report brings about real change, because we are failing as a society if anyone suffers needlessly in their final weeks, days and hours.”
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.”
Jane Mordue, interim Chair of Healthwatch England, said: “Poor end-of-life care denies people a dignified, peaceful death and causes suffering to them and their loved ones. What’s more, it comes at a huge financial cost to the NHS. Local Healthwatch have found lots of good examples of end of life care that fully involve patients and their families, and we know that many thousands of people are helped every year. Healthwatch Cornwall has gone even further, and has led the way in bringing local providers together to commit to an end-of-life Charter. The key now is to see best practice replicated across the country to ensure everyone experiences a dignified death.”
The findings of the review will feed directly into the development of CQC’s future regulatory approach across all sectors.