New NHS guidelines set out how to give people the best possible care at the end of their lives.
NICE - the National Institute for Health and Care Excellence - aims to support healthcare professionals in giving consistent, compassionate and high quality clinical care to people in their last days of life.
It's estimated that about half a million people die each year in England and 3 out of 4 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."
The NICE guideline follows 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 it be replaced with individualised care plans for dying people.
Emeritus Professor Sam Ahmedzai, a professor of palliative medicine and chair of the independent committee of experts who developed the guideline, 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 guideline is aimed at supporting healthcare professionals in all areas of the NHS, including GPs, nurses and hospice workers.
Recognising when death is imminent
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 guideline 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 sets out what information should be recorded and signs to look out for which may indicate if the person is recovering or deteriorating.
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 colleagues with more experience of providing end of life care 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.
Poor implementation of the Liverpool Care Pathway often led to dying people becoming dehydrated. The NICE guideline supports the use of offering fluids when it is the person's wish or if they may help medically.It recommends that people who are in their last days of life should be supported to drink if they wish to and are able to. Healthcare professionals should assess the dying person's hydration status daily to review if they require fluids given through a drip (clinically assisted hydration).
If it is thought that a person would benefit from having fluids through a drip, the guideline advocates that risks and benefits should be discussed with the dying person and those important to them. They should be advised that whilst giving fluids in this ways may relieve some problems, they could cause others and that, in a person already near death, there is medical uncertainty whether giving assisted hydration prolongs or shortens a person's life.
Communication and symptom control
A report by the Parliamentary and Health Service Ombudsman earlier this year outlined concerns over end of life care such as a lack of communication and poor symptom control.
The NICE guideline supports 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 lives in Wirral and provides support both to people nearing the end of their lives and those important to them. She helped to develop the NICE guideline and 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 guideline also sets 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.
It also recommends 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.
Susan Dewar, a community district nurse and independent committee member, said: "Care in the last few days of life has always been an important part of nursing no matter what the underlying cause of death. The causes of death and the treatments available during the course of a disease have changed in the past decades and this perhaps has led to the perception of dying as a complex and specialised process. As a result we may have overcomplicated the care of people in the last few days of life.
"Listening to patients and those close to them express their wishes is an integral part of nursing. Translating the information gathered leads on to the development of an individualised care plan for that person. Everyone is an individual so the care should be individualised but supported by the best available evidence and this is what this guideline supports.
"I hope this guideline gives all nurses wherever they work the confidence that they can provide high quality nursing care in the last few days of life and that the recommendations for further research offer nurses an exciting challenge which I hope many will grasp and take forward.
"I have worked as nurse for 50 years and providing nursing care with people at the end of their life has always been part of my role. It has been a privilege to use my knowledge and experience to work on the production of this guideline."
Dr Adam Firth, GP and independent committee member, said: "As a GP, I have the privilege of providing care and support for people from cradle to grave. The opportunity to work with NICE and the guideline development team to help shape the practice of delivering excellent care for dying people and those important to them is something I have valued highly.
"The aim of this guideline is to provide clear, evidence-based recommendations which will allow people to receive the best possible care at what is often a very difficult time. The communication and symptom control aspects of the guidance will help the whole healthcare team to be able to work together to ensure that people die with dignity, whenever possible in the place of their choosing and with their symptoms effectively controlled."
Compassion in Dying's statement in response to the NICE "Care of dying adults in the last days of life" guidelines
"We welcome the new NICE guidelines and hope that the NHS respects them. We know from the conversations we have with thousands of people who contact our free information service how important well-informed and trained doctors, nurses and care professionals are in ensuring people have the kind of death that they would wish for themselves.
"We also know from YouGov research that having a 'good death' is significantly more likely if you have planned for the end of life in advance and had a conversation with loved ones about what treatment you would and would not want. Where wishes of patients were recorded formally they were 41% more likely to be judged by loved ones to have died well."