End-of-life care scheme axed because of poor record

Stories of dying patients being denied drinks and unnecessarily sedated by nurses have this week triggered the demise of a controversial system of end-of-life care in the UK.

The Liverpool Care Pathway (LCP) was introduced a decade ago into the UK's National Health Service, and was meant to import into hospitals and care homes the same kind of end-of-life procedures successfully developed and applied in hospices.

These included halting futile treatment and drugs when death is expected within hours or days, increasing pain relief if necessary and summoning and consulting with relatives on where the patient would prefer to die, and how best to handle the patient's last hours.

However, an official review of how well the pathway has been implemented in hospitals has found significant faults. "It is clear that, in the wrong hands, the pathway has been used as an excuse for poor quality care," it concludes.

"Examples include leaving patients without adequate nutrition, hydration and inappropriately sedated," said Julia Neuberger, senior Rabbi at the West London Synagogue and head of the panel that published the review on 15 July. "This is not only awful for the patients, but it is deeply distressing to their relatives and carers."

The report recommends abolishing the LCP and replacing it over the next six to 12 months with care plans tailored to each dying patient. It also calls for more research into how best to diagnose when patients are dying, what care works best for them, and how nurses and doctors should be trained to manage patients who are dying.

The government has responded, saying it will follow the advice to get rid of the pathway.

The review acknowledges that the pathway works well, "in the right hands". "But," says Neuberger, "evidence given to the review has revealed too many serious cases of unacceptable care where the pathway has been incorrectly implemented."

Scant resources

The review highlighted a lack of training in end-of-life care for hospital staff, especially nurses.

But it laid part of the blame for this on the extremely low level of research and resources spent on palliative care. "Currently, well below one per cent of research funding is devoted to end-of-life care," it says.

The review demands more research on the biology of dying, better diagnoses and prognostic tools to establish when patients are dying, and evidence-based education of healthcare staff to equip them for the sensitive task of informing and handling patients, relatives and their friends at such a critical time of life.

End-of-life researchers in the UK welcomed the call for greater resources. "In 2010, the UK National Cancer Research Institute spent ?508 million on research, but only around 0.24 per cent of it on palliative and end-of-life care," says Katherine Sleeman of the Cicely Saunders Institute at King's College London, the UK's top palliative care research unit. "That equates to just 31 pence for every ?100 spent on research."

In the US, the figure is not much better, she says, at around one per cent of what the National Cancer Institute spends on research.

"We need more studies on the value of early palliative care and more work on how to help doctors and nurses to recognise dying better, and to take steps to open up discussions with patients and families in a more sensitive way," says Felicity Murtagh, also at the Cicely Saunders Institute. "We need as much emphasis on caring as on curing."

Ever more deaths

Murtagh says the main problems with the LCP were in hospital settings. She cites a recent study of 596 bereaved family members, which found that of those whose loved ones died in hospices, 80 per cent rated the end-of-life care as excellent. "In hospitals, only 50 per cent rated it as excellent, so there's a gap with what happens in hospitals," she says.

The need for palliative care improvement is imperative, she adds, because numbers of deaths are predicted to increase by 17 per cent in the UK's ageing population over the next 20 years, and between 69 and 82 per cent of those who die in high-income countries need palliative care (Palliative Care, DOI: 10.1177/0269216313489367).

Another study of seven European countries involving 9344 respondents found that the majority of people ?about 55 to 75 per cent depending on the country ? would prefer to die at home. The study also found that only two to six per cent of people rated extending life as most important. In the UK, patients highlighted three priorities at the end of life: relief of pain, avoiding being a burden, and not dying alone (Palliative Care, DOI: 10.1177/0269216313488989).

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