End of life care must respect patients from all backgrounds

CQC report supports better training and communication for nurses

A national review of end of life services has found people from certain groups in society experience poorer quality of care because providers and commissioners fail to understand their specific needs.

The report A Different Ending was published this week by the Care Quality Commission (CQC) and focuses specifically on groups such as black and ethnic minorities, people with learning disabilities, the homeless and travellers.

It found 67% of the 40 clinical commissioning groups (CCGs) surveyed had assessed the end of life care needs of their local populations – meaning one in three had not.

The data was obtained from two surveys in 2014 and 2015 and followed a recommendation in the More Care Less Pathways review of the failed Liverpool Care Pathway by Baroness Julia Neuberger in 2013.

Its publication also comes only a few weeks after the Royal College of Physicians published the first official audit of end of life care in England since the LCP ended.

Many of the RCP findings regarding variations in the standard of care are echoed in the CQC report as are recommendations about extra staff training and better communication.

One new area explored was the difficulties nurses find when determining when patients with long-term conditions other than cancer may reach the end of their lives.

CQC researchers interviewed a hospice nurse who said: ‘When we opened the respite unit, the first two patients had advanced chronic obstructive pulmonary disease.

[If I had been] asked at the time I would have expected both to be in the last year of life, but both lived for three years.

‘There are indications that people are at the end but it’s incredibly difficult to know when they’re in their last year’.

Another interviewed a member of the traveller community who described the lack of cultural understanding including staff not realising the whole family of a dying person must visit to pay respects while they are still alive.

They said: ‘It was hard for me seeing my nephew where he was and trying to deal with these nurses that had no understanding whatsoever, even though I explained on many occasions what was happening.’

While 76% of the CCGs had commissioned training on end of life care for some of the groups highlighted in its review, only 18% had actually commissioned specific services.

Chief inspector of general practice at CQC Steve Field, said: ‘We found that where commissioners and services are taking an equality-led approach, responding to individuals’ needs, people receive better care.’

NHS England’s national clinical director for end of life care Bee Wee said: ‘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.’

The full report is available here