Most palliative care nurses feel unable to meet patient needs

Junior health staff are having to make complex decisions about end-of-life care, due to a lack of out-of-hours palliative care nursing services, a new report has warned.

The report, published by the Queen’s Nursing Institute and the Marie Curie Charity, has assessed how end-of-life care has changed over time and some of the issues that continue to impact the efficiency of services.

The new national survey of end-of-life care providers has come 70 years after the first report of this kind was published by the two organisations in 1952.

“The clear evidence presented in this report should be a wake-up call for politicians of all parties”

Crystal Oldman

Now, the latest report has looked at how far palliative and end-of-life care has come in the last seven decades and what changes are needed to ensure equity in care.

The new survey, carried out in 2022, received 696 responses from health and care professionals, with registered nurses representing the majority of respondents (72%).

Despite many significant advances in care delivery and medicines more broadly over the last 70 years, the report found that end-of-life care had “not kept pace” and that services continued to be severely impacted by social and economic challenges seen in the 1950s.

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The report revealed that nine out of 10 respondents to the survey said they were unable to meet patient or carer needs. Often this was because professionals lacked time to provide holistic end-of-life care “in the way they wanted”, it said.

One nurse respondent from England said: “[I] feel like I am rushing and not giving the right amount of time, especially psychologically.”

Meanwhile, the report also found that out-of-hours pallative care for patients was “mostly or always insufficient”.

It highlighted that this had led to a breadth of problems, including junior staff being forced to make complex decisions in the absence of senior or specialist staff.

A team lead nurse in England said: “Junior staff [are] making complex decisions out of hours when usual GP or nursing staff [are] not on duty.

“Palliative and end-of-life patients do not stop needing specialist advice after working hours end.”

Separately, the report found that, despite the UK becoming considerably wealthier over the last 70 years, financial hardship remained as widespread at end of life as it did in 1952.

Over half (58%) of respondents saw people for whom a food bank would be helpful, while 7% said over half of the people they cared for needed a food bank.

Community nurses also reported families living in cold homes and even turning off oxygen machines to reduce their energy bills.

One community nurse from rural Scotland said: “The homes we provide care in can be cold, unsuitable, cluttered and unhygienic.”

Meanwhile, social isolation was a common experience for many palliative care patients, with 97% of staff saying they cared for people who were experiencing loneliness at the end of life.

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While most respondents said they thought alleviating social isolation was part of their role, more than three-quarters said they did not have the time to offer this kind of support.

The QNI and Marie Curie made four key recommendations in the report for policymakers to take forward.

They urged for there to be a new funding solution for services delivering palliative and end-of-life care, to end the “postcode lottery” in access and to ensure services are fit for the future.

In addition, they called for a national strategy for end-of-life care, supported by a delivery plan, in every UK country.

The organisations also demanded an end to poverty among people at the end of life, including protecting those living with a terminal illness from high energy costs.

Meanwhile, they called for greater support for families and carers of people living with a terminal illness, including improvements in financial and bereavement services.

Dr Crystal Oldman, chief executive for the QNI, said: “Nurses working in the community know that they only have ‘only one chance to get it right’ when it comes to end-of-life care.

“Having the right resources in place, alongside careful advance planning, are absolutely critical.

Crystal Oldman

Crystal Oldman

“If not properly resourced, there are huge risks inherent in services’ capacity and capability to deliver high quality palliative and end-of-life care.”

She added: “Healthcare provider organisations are well aware of the challenges they face, and community nurses have continued to manage ever larger and more complex caseloads, and they deserve admiration and praise for that.

“But this way of working is not sustainable for nurses, the individuals and families served or for the system as a whole.”

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Dr Oldman highlighted that palliative and end-of-life care was “a service that nearly every citizen will need one day”.

“The clear evidence presented in this report should be a wake-up call for politicians of all parties,” she said.

“The extent to which our politicians are prepared to support the recommendations in this report might be seen as a measure of our respect as a society for human life.”

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