Report urges government action on palliative care

Marie Curie has today released its latest report into end-of-life experiences, titled ‘Time to Care: findings from a nationally representative survey of experiences at the end of life in England and Wales’.

“Without urgent action, gaps in access to palliative and end-of-life care will only grow”

Annette Weatherley

The report was a collaboration between Marie Curie, King’s College London’s Cicely Saunders Institute, the University of Hull’s Hull York Medical School and the University of Cambridge.

It saw 1,179 people across England and Wales, who had recently registered the death of an adult family member, surveyed about their experiences of end-of-life and bereavement care services, and painted a picture of overstretched nurses, doctors and other healthcare staff leading to sub-par care.

For example, the report highlighted the huge contributions of community and primary care nurses in supporting people at the end of their lives, but warned that their heavy workloads meant they were “not always able to deliver care that is high quality“. 

“Too often people approaching the end of life experience difficulties assessing the care and support they need,” the report stated.

The survey showed that most people who died had contact with community-based healthcare servies in the last three months of their lives, with community or district nurses and healthcare assistants “heavily relied on” in particular.

Around half had contact with specialist palliative care teams, while fewer than half of respondents reported having a key person they could contact about the coordination of care of their relative.

Many of the respondents suggested that care – when it could be accessed – was good, but that it was not always easy to get hold of clinicians.

A person in England, whose mother died from conditions including dementia, told of difficulties accessing services and having to “fight” for care, adding: “[The] consultant didn’t want to know. Community nurses did their best but had constraints. My father’s health deteriorated as a result.”

A respondent in Wales, whose mother died of cancer, said: “My mum received excellent support from GPs, district nurses and the palliative care team.

“Although services were great once you got hold of them, getting hold of someone [for exampe] on weekends and evenings for assistance when mum was in pain was challenging and added to stress.”

The survey found that a hospital was the most common place of death for the people who died, followed by a private home, then a care home and then a hospice.

On the topic of hospitals, the report noted: “Even though many respondents described hospital staff as supportive, the hospital was often reported to be an inappropriate environment to die in due to noise and lack of privacy.”

More than half of people in end-of-life care used an ambulance at least once in the last three months of their life, almost half visited A&E and one in eight spent more than 30 days in hospital.

Those who died in hospital, the report found, had the “highest symptom burden”, and those financially worse off had a higher prevalence of pain, breathlessness, anxiety, not being peaceful and not having information needs met.

Overall, a third of those who died were reported to have been “severely or overwhelmingly” affected by pain during their last week of life.

Around half of respondents said they were unhappy with one or more aspects of care received by their relatives, and many reported feeling that recognition of palliative care needs had come too late.

“We are determined to shift more healthcare out of hospitals and into the community”

Government spokesperson

Annette Weatherley, Marie Curie’s chief nursing officer, said the findings were “shocking”.

She said: “Too many people are dying in avoidable pain, struggling with breathlessness and other debilitating symptoms because of the difficulties they face accessing the end-of-life care they need from overstretched GPs and other health and care workers.

“Without urgent action, gaps in access to palliative and end-of-life care will only grow.”

Ms Weatherly called for improvements, adding: “There is only one chance to get it right at the end of life.

“Yet, as the evidence shows, too many people are being failed by a system faced with extreme financial and workforce pressures.  It’s time for governments to step up and fix care of the dying.”

Marie Curie chief executive Matthew Reed said, in a foreword to the report, that the findings showed doctors and nurses not having the time to provide adequate care for their patients and described a “postcode lottery” for palliative care.

“Without urgent action, current gaps in access to palliative and end-of-life care are only going to grow in the coming years as our population ages,” said Mr Reed.

He added: “We are calling on the new UK Government to act urgently to make the policy changes needed to ensure that everyone affected by dying, death and bereavement receives the best possible care and support, both now and in the future.”

In response to the report, a Department of Health and Social Care spokesperson said: “This government wants a society where every person receives high-quality, compassionate care from diagnosis through to the end of life.

“We are determined to shift more healthcare out of hospitals and into the community, to ensure patients and their families can access the personalised care they need, where and when they need it.”