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New NHS guidance on end-of life treatment after Liverpool Care Pathway withdrawn

Decisions on when patients are reaching the end of their life should be taken by a number of health experts rather than relying on the medical opinion of just one doctor, according to new guidance from health officials.

The draft guidelines from the National Institute for Health and Care Excellence (Nice) follow the abolition of the controversial Liverpool Care Pathway - a regime that recommended the withdrawal of treatment, food and water from some sedated patients in their final hours or days - which was phased out last year after a Government-commissioned review found serious failings in how it was being implemented.

Nice said its guidelines address concerns that fluids were being withheld under the pathway, and its recommendations include that people in their last days of life should be encouraged to drink if they wish to and are able to and receive assisted hydration if appropriate, but this be reduced or stopped if there is any sign of harm or no sign of benefit.

They also emphasise the importance of recognising when patients actually have a chance of recovery in the light of cases where elderly patients were being left to die when they could have got better.

Nice said around half a million people die each year in England and while around three quarters of deaths are expected, recognising when death is imminent can be challenging.

It said the new guidelines aim to help doctors and nurses identify when someone is entering their final few days of life and places the individual and their loved ones at the heart of decisions about their care.

People who are dying and those important to them should be fully involved in decisions about medicines for managing symptoms in the last days of life, it said.

Nice chief executive Sir Andrew Dillon said: "Recognising when we are close to death and helping us to remain comfortable is difficult for everyone involved.

"The Liverpool Care Pathway was originally devised to help doctors and nurses provide quality end-of-life care. While it helped many to pass away with dignity, it became clear over time that it wasn't always used in the way it was intended.

"Some families, for example, felt that elderly relatives were placed onto the pathway without their knowledge or consent. Following a review, the pathway is no longer used.

"Earlier this year, the Parliamentary and Health Service Ombudsman said that end of life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care."

The draft guidance is open for consultation until September 9.

Professor Bill Noble, medical director at Marie Curie, said: "We welcome the publication of the draft Nice guideline to help doctors and nurses identify when someone is dying and to improve the care that they receive in the last few days of life.

"We know from our own research that around 92,000 people a year in England miss out on palliative care, often because healthcare professionals don't recognise that they are at the end of life.

"We also welcome Nice's emphasis on research, which highlights serious gaps in the available research in understanding when people are dying and the medication and the care that they need. Just 10p out of every £100 spent on research goes to palliative and end of life care research.

"This research is important as it can help guide healthcare professionals who look after dying patients but who aren't specialists in palliative care provide the high quality care that their patients need."

Rob George, professor of palliative care at Kings College London and president of the Association of Palliative Medicine, told the BBC Radio 4 Today programme: "One of the concerns we have had over the years is understanding what happens to people as they die.

"One of the things that is a particular worry is if we give people fluids when they can't swallow properly, fluid goes into the lungs.

"If we give fluids by injection or infusion, as the body dies we may handle it in a different kind of way and often as not, you end up with a patient with water logged lungs and all those kind of things.

"The problem is in a sense with an industrialised approach to managing dying people is everyone gets pre-occupied with ticking the boxes and not looking at the person in front of them."

He added: "Let's not forget we are dealing with people who are dying and people who are distressed. It's not about diagnosis and pathology it's about distress and people.

"Bed side assessment and communication, the milk of human kindness, all those things are what matters.

"It's very difficult in the modern health service, often, with the pressures on staff and all of the almost compassion fatigue sometimes that people have engaging with those individual needs.

"The Liverpool Care Pathway was such a wake-up call for us that we have had to engage this in a different kind of way."

Tony Bonser, one of two lay members of the review of the Liverpool Care Pathway, told the BBC Radio 4 Today programme about the death of his son under the practice.

He said: "We as his parents didn't know what was going on, no one was telling us Neil was terminally ill, the word dying was never used, nor was it ever suggested to us his life may be very short.

"Towards the end of his life we were totally unaware death was approaching so when it did happen, death was a shock."

He added: "Some people don't want to be informed but I campaign and we campaign for much more openness.

"I campaign for people being able to feel free to openly talk about death and dying and to be kept informed to the extent they want to and can cope with.

"That will vary for different people but the important thing is treating everybody, be they patient or carer, as an individual and giving them what they need at the time."

Mark Baker, clinical practice director of the National Institute for Health and Care Excellence, told the same programme: "We take meticulous care in bringing people into life, we need to take as meticulous care helping them to leave life comfortably and particularly for the experience to be good for them and for those who are close to them.

"There is a widespread belief in the profession that do not resuscitate orders are a clinical decision, but they are a decision to be made in conjunction with the patient and their families."

He added: "There is an art and a science of medicine. The science of medicine helps us live longer but the art makes its delivery comfortable and appropriate.

"Perhaps in some places and at some times we focus too much on the science and have lost the art."


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