NHS end-of-life care ‘often falls below expectations’

End-of-life care across the NHS in England is “inconsistent” and “often falls below expectations”, a report has found.

A national probe by the Healthcare Safety Investigation Branch (HSIB) found care for patients who are dying is “variable and inequitable”, despite a national strategy for proceedings being in place in England since 2008.

Its report highlighted “concerns about the limitations of the delivery of palliative and end-of-life care” which are more noticeable in deprived areas.

Services were found to not always be able to deliver individualised care, and varied due to the likes of staff shortages and the availability of charitable donations.

The report also found a lack of specific guidance for service providers on the palliative needs of their local populations.

Nick Woodier, national investigator at the HSIB, said: “Conversations about death and end-of-life care are challenging and emotive but it is crucial that health and care professionals can discuss needs and expectations with their patients and families.

“They should be supported by a system that provides continuity of care, reassurance, and dignity at what is sometimes a very distressing time.”

One case highlighted by the HSIB was that of Dermot, a 77-year-old with sarcoma, a rare group of cancers which impact soft tissues.

He received radiotherapy and surgery, but was told the cancer had spread and was incurable.

Dermot’s family told the HSIB there were “challenges” in finding information on different inpatient palliative care services in their local area and they had to “push” for him to be admitted.

His wife also told the investigation they felt “completely alone” and the situation had led to physical and psychological distress for Dermot and psychological distress for his family.

Mr Woodier said: “In Dermot’s case, the family felt he ‘did not have a good death despite the efforts of those working with limited resources’.

“Our national investigation findings echo those seen in national publications since 2004; that standards of holistic palliative and end-of-life care often fall below expectations and that there has been limited progress in improvement.”

On the back of its probe, the HSIB has made three recommendations to NHS England.

They are focused on developing data sets to support the understanding of people’s needs in different areas, as well as developing a “minimum expected service level” and adding staff with specialist capacity to the workforce.

Mr Woodier said: “The safety recommendations and actions we have set out are directed towards ensuring palliative care patients receive the best level of care wherever they live in England.

“Each person, and their loved ones, should have a holistic plan, one that is all-encompassing and meets all their needs – physical, psychological, cultural, social, and spiritual.

“We recognise that provision of palliative and end-of-life care is complex, with multiple organisations involved. However, the need for high standards of palliative care will only increase as the population grows and people live longer.”

According to Ruth Driscoll, associate director of policy and public affairs at terminal illness support provider Marie Curie, “one in four people dies without the care and support they need”.

She added: “Marie Curie is concerned that gaps in services for people dying at home, especially in deprived areas, require urgent action to ensure nobody misses out on the end-of-life care they need for pain and other symptoms.

“Gaps in overnight services in the community result in unnecessary, expensive, and distressing hospital admissions for dying people. The NHS turned 75 this month amid a backdrop of a rapidly ageing population with increasingly complex needs.

“The Government must act urgently and radically to ensure that dying people are able to access safe and high-quality care on a 24/7 basis. Otherwise, by the time the NHS turns 100, it will be overwhelmed.”

Toby Porter, chief executive of Hospice UK, said the HSIB’s probe is “important”.

He added: “Too many people in the UK are dying in pain and without the support they and their loved ones need. Everyone should have the right to be cared for and comfortable at the end of their life.

“Dermot’s story is moving, and we pay tribute to his family for sharing it. But sadly, his experience is not unique.

“We know that the care people receive at the end of life can be hard to navigate and can vary depending on circumstances, the type of illness, and location. This ‘postcode lottery’ is wrong.”

An NHS England spokesperson said: “Significant improvements have been made to palliative and end of life care in England nationally, regionally, and locally since the 2008 End of Life Care Strategy, including an increase in the number of hospitals with face-to-face palliative care specialists available seven days a week and the number of end-of-life care services rated as outstanding by CQC has more than doubled since 2016.

“The NHS is implementing the recommendations called for in this report including publishing minimum service level expectations for palliative end-of-life care earlier this year, while ensuring that there is robust data available alongside the Office for Health Improvement and Disparities.”