Health and care staff are often failing to discuss end of life care needs “early enough” with patients with chronic progressive illnesses other than cancer, according to a major report.
The Care Quality Commission noted that for conditions, such as advanced heart disease, respiratory disease and dementia, it could be difficult to know whether a patient was in the last year of life.
“What is important is that everyone receives care based on their individual needs”
As a result, patients were not always being given appropriate care or the opportunity to make plans and choices with relatives about how and where they would prefer to be cared for and die, said the CQC.
The regulator’s criticism was based on a review of how clinical commissioning groups were addressing inequalities in end of life care, including patients with conditions other than cancer and other groups.
It concluded that more needed 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 were always identified and addressed.
The CQC advised that early conversations should happen between staff and patients 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.
“A third of CCGs are not assessing end of life care needs in their area and must up their game”
However, the CQC did highlight 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.
Overall, the CQC said that patients from certain groups in society were experiencing poorer quality care at the end of their lives than others, because providers and commissioners did not always understand or fully consider their specific needs.
Only 67% of the 40 CCGs it surveyed said they had assessed the end of life care needs of their local populations, according to the CQC’s report A different ending: Addressing inequalities in end of life care.
Mug Steve Field 40 50
Of the CCGs that told the CQC they had assessed the end of life care needs of their local populations, only 18% had gone on to commission specific services for any of the groups considered in its review.
The CQC warned that the impact of this could be that local health and care services were not fully equipped or ready to provide “truly personalised” end of life care for groups such as older people, those with dementia, a learning disability, a mental health problem, or a chronic progressive illness other than cancer.
The CQC called for action to ensure all patients had 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: “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,” he said.
“Expert care needs to be available at all times to all who need it”
Professor Bee Wee, NHS England’s national clinical director for end of life care, highlighted that the UK was rated as the best country in the world for end of life care.
But she added: “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,” she said.
The findings of the review will feed directly into the development of CQC’s future regulatory approach across all sectors.
Claire Henry, chief executive of National Council for Palliative Care and Dying Matters Coalition, said: “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.”
Tracey Bleakley, chief executive of charity Hospice UK, said: “The CQC’s report highlights too many people and their families – by virtue of their ethnicity, identity or personal circumstances – are either missing out on the vital support they need, or receiving sub-standard care.
“Many hospices have made considerable progress in expanding access to their services and ensuring the needs of people across their diverse local communities are better supported, particularly for people with dementia, those from black, Asian and minority ethnic communities and homeless people,” she said. “However, there is still much more to do.”
Dr Jane Collins, chief executive at Marie Curie, said the review showed that discrimination remained a problem for some “until the very end”, which was “not right or acceptable”.
“It also shows unequivocally that a third of local CCGs are not assessing end of life care needs in their area and must up their game,” she said.
Amanda Cheesley, professional lead for long-term conditions and end of life care at the Royal College of Nursing, said the report made for “very sober reading”.
“Death can come at any hour of the day or night and expert care needs to be available at all times to all who need it, but under-resourced community and district nursing teams can make that care very difficult to provide,” she said.
“The government and health services must work together to ensure that everyone is able to access the best care at the end of their lives,” she added.