NCPC welcomes new NHS guidelines on end of life care

The guidelines have been drawn-up by the National Institute for Health and Care Excellence (NICE). 

It is estimated that around half a million people die each year in England and three out of four of these deaths are expected. A recent report by the Economist Intelligence Unit ranked the UK as having the best end of life care in the world, but also outlined areas where improvements still need to be made. 

Professor Gillian Leng, deputy chief executive of NICE, said: “Death is something that happens to us all and how we are cared for can make a big difference to our final days. 

“We know the vast majority of people in this country receive very good end of life care, but this isn’t always the case. Looking after people who are dying can be challenging and our new evidence-based guideline will support doctors, nurses and other healthcare professionals to provide the best care possible for every patient.” 

But NCPC Chief Executive Claire Henry said that while the guidelines were welcome, more still needed to be done. She said: “At its best, end of life care in the UK is world class, but there is huge inconsistency and too many dying people are being failed at their time of greatest need. That’s why these new NICE guidelines are so important and so welcome.

"However, they must also be accompanied by end of life training and support for healthcare professionals, greater investment in end of life care and an unwavering commitment to transforming care of the dying, including by government implementing the recommendations contained in the review of choice at the end of life earlier this year. That is how we can ensure that the care that every dying person gets in their last days is as personal and high-quality as we would want for ourselves and our own families."

The NICE guidelines follow the abolition of the Liverpool Care Pathway, a protocol for looking after people at the end of their life. This was phased out last year after a government-commissioned review found serious failings in how the pathway was being implemented and recommended its replacement with individualised care plans for dying people. 

NICE chairman Professor Sam Ahmedzai said: “The Liverpool Care Pathway was originally developed to help the NHS provide a good death for people at the end of their lives. However, its implementation became increasingly controversial over the years with stories of fluids and medicines being withheld, over-sedating the dying person. There were also problems with inexperienced staff recognising when someone was truly close to death, or if they had a possibility of recovery. It became seen as a ‘tick-box exercise’ and a ‘one-size-fits-all’ approach.” 

Professor Ahmedzai continued: “The NICE guideline addresses these issues and gives professionals a comprehensive, humane and evidence-based framework for giving dying people, their families and others important to them, the best possible care based on each individual’s needs and wishes.”  

The guidelines are aimed at supporting healthcare professionals in all areas of the NHS, including GPs, nurses and hospice workers. 

Identifying when a person is entering the last few days of their life can be difficult; how long it takes and the ways in which people die can vary and depends on a person’s condition. The NICE guidelines will help doctors, nurses and other healthcare professionals recognise when a person may be entering the last days of their life, or if they may be deteriorating, stabilising or improving.

It also recommends that:

• Tests which are unlikely to affect care in the last few days of life should be avoided unless there is a clear clinical need for them.
• Advice should be sought from more experienced colleagues when there is a high level of uncertainty about whether a person is entering the last days of life, or if they are stabilising or recovering. 
• Fluids should be offered fluids when it is the person’s wish or if they may help medically. Poor implementation of the Liverpool Care Pathway often led to dying people becoming dehydrated. 

The NICE guidelines support clear communication between healthcare professionals, the person who is dying and those important to them. It emphasises the need for shared decision-making between all concerned. Its recommendations include developing individualised care plans in discussion with the person who is dying, their families and others important to them, and which clearly take into account the dying person’s needs and wishes. 

Annette Furley, who lives in Wirral and supports people nearing the end of their lives and their loved ones, helped develop the NICE guidelines. She said: “We, as a society, are increasingly creating end of life plans for ourselves that include what treatments we want and do not want, where we want to die, who we want with us. It can be easy for healthcare professionals to sometimes forget this and solely focus on treating symptoms.  

“This NICE guideline puts the dying person and those important to them at the heart of decisions about their care. This will play a large part in improving a person’s experience of care by supporting them in their final days according to their wishes.” 

The guidelines also set out a series of recommendations to manage symptoms that may develop at the end of life. These include nausea and vomiting; pain; breathlessness; noisy respiratory secretions; and anxiety, agitation and delirium. 

They also recommend that doctors review a person’s medication once it is recognised that they may be entering their final days of life. Any previously prescribed medicines that are not helping to alleviate symptoms or that may cause harm should be stopped following a discussion and agreement from the dying person and those important to them. Drugs prescribed in anticipation of a person dying should be based on their likely future symptoms, and not in a blanket fashion. 

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Download the new NICE guidelines on end of life care