Health

Care of dying patients 'still inconsistent and poor'

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More investment is still needed to improve the "inconsistent and often poor" care of dying people, say palliative care experts.

The King's College London lecturers also fear relatives are sometimes excluded from "critical conversations" about the end of loved one's life.

And they say the NHS does not always have the capacity to provide "time and continuity".

NHS England said guidance stressed the importance of relatives' involvement.

The experts from the Cicely Saunders Institute, which examines palliative care policy, highlight a recent report from the Parliamentary and Health Service Ombudsman (PHSO) that shows that most NHS complaints are focused on the last year of life.

Their modelling shows the number of people dying in the UK is likely to increase in the next several years by another 100,000 - added to approximately half a million people every year at the moment.

'Really distressing'

One of the lecturers, Dr Jonathan Koffman, said: "How will we identify these individuals and provide them with impeccable assessment?

"At the moment there's too much inconsistency and poor quality care meted out to people at critical moments in their life.

"They experience poor management of really distressing symptoms. This is not a vocal constituency - often they can't talk.

"And the family members who are subsequently bereaved are too wounded by those experiences to then talk and help us work out what to do better."

The National Institute of Health and Care Excellence (NICE) is still consulting about its 266-page draft guidance on end-of-life care, which was published in July.

Two years ago, the government announced that previous care guidelines - called the Liverpool Care Pathway - were being phased out, after mounting criticism and distressing accounts that they had become a "checklist".

'Death manual'

Another palliative care lecturer from King's College London, Dr Katherine Sleeman, said: "The NICE guidance is pretty thorough as a synthesis of scientific evidence.

"You can think of it as a reference manual for death. That's important and necessary within their remit, but not sufficient to ensure everyone who's dying is cared for well."

She said other essential factors included investment in education and training.

"Medical students graduate pretty much unprepared for this.

"An audit last year showed only one in five NHS trusts mandate training for doctors in palliative care - but 100% of them are going to have to care for someone who's dying."

'Difficult issues'

Dr Sleeman said she was publishing research soon which shows how the Liverpool Care Pathway became misused.

She added: "It was intended as a guide but it became a protocol. It was used as a crutch because people simply didn't know any better.

"The review and phasing out was very hard for nurses on the wards. They told us they didn't know what to do.

"But that made me feel that getting rid of it was the right thing to do."

Prof Bee Wee, NHS England's national clinical director of end of life care, said: "These can be difficult issues for anyone to think or talk about, whether it's patients, their loved ones or the professionals caring for them.

"We made clear in our actions for end of life care guidance, published in November, how much importance we place on individuals and their loved ones being engaged, supported and empowered to make decisions about their own care."

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