New guidance on end of life care calls for an individualised approach, with hydration maintained where possible, in order to avoid the mistakes of the Liverpool Care Pathway.
The guidelines, published today by the National Institute for Health and Care Excellence, follows the abolition of the controversial pathway, phased out last year after a government-commissioned review found serious failings in how it was being implemented.
“We may have overcomplicated the care of people in the last few days of life”
A coalition of leading nursing and palliative care organisations subsequently launched a new approach to end of life care centred on five priorities. The new framework, called One Chance to Get it Right, recommended that NICE be asked to draw up more detailed clinical guidance.
NICE said its new guideline – the first it has developed on end of life care – aimed to support healthcare professionals to give “consistent, compassionate and high quality clinical care to people in their last days of life”.
It was designed for healthcare professionals in all areas of the NHS, including GPs, nurses and hospice workers, noted the institute.
NICE highlighted three areas of its guidance in particular – recognising when death was imminent, communication and symptom control, and maintaining hydration.
The institute highlighted that poor implementation of the Liverpool Care Pathway often led to dying people becoming dehydrated.
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In contrast, the NICE guideline backs the use of offering fluids when it is the person’s wish or if they may help medically. It recommended that people in their last days of life should be supported to drink if they wish to and are able to.
Healthcare professionals should assess hydration status daily to review if a patient required fluids given through a drip, it said, adding that the risks and benefits should be discussed with the dying person and those important to them.
However, NICE said there was “medical uncertainty” about whether giving assisted hydration prolonged or shortened a person’s life in those already near death.
“Our guideline will support doctors, nurses and other healthcare professionals to provide the best care possible for every patient”
Meanwhile, the institute acknowledged that identifying when a person was entering the last few days of their life could be difficult, noting that the same symptoms could indicate hat a patient was deteriorating, stabilising or even improving.
It said the guideline would help doctors and nurses correctly recognise what was happening, setting out what information should be recorded and signs to look out for that may indicate if the person was recovering or deteriorating.
It also said that advice should be sought from colleagues with more experience of providing end of life care when there was a high level of uncertainty about whether a person was entering the last days of life.
Meanwhile, NICE stated that there should be clear communication between healthcare professionals, the person who was dying and those important to them.
It emphasised the need for shared decision-making between all concerned, including developing individualised care plans.
The guideline also recommended that clinicians review medication once it is recognised that a patient may be entering their final days of life.
Any previously prescribed drugs not helping to alleviate symptoms, or that may cause harm, should be stopped following agreement from the dying person and their carers or relatives.
In addition, it recommended that tests that are unlikely to affect care in the last few days of life should be avoided unless there is a “clear clinical need for them”.
NICE calls for tailored approach to end of life care
Emeritus Professor Sam Ahmedzai, chair of the expert committee that 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,” he said. “There were also problems with inexperienced staff recognising when someone was truly close to death, or if they had a possibility of recovery.”
Professor Ahmedzai said the pathway had become seen as a “tick-box exercise” and a “one-size-fits-all” approach.
He added: “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.”
Susan Dewar, a community district nurse and independent NICE guideline committee member, highlighted that care in the last few days of life had always been an important part of nursing.
“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,” she said. “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,” said Ms Dewar.
She added: “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.”
Professor Gillian Leng, deputy chief executive of NICE, said: “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.”
“Without implementation, including effective training for staff, these latest guidelines will fail to deliver a genuine shift in attitudes and care”
Charities involved in palliative care nursing and hospice care welcomed the aspirations of the guidance, but warned that it must be backed up with training for staff in order for it to be implemented.
Lord Howard of Lympne, chair of Hospice UK, said: “The real challenge will be how this guidance is put into practice. There can never be ‘a tick-list approach’ towards caring for the dying and this guidance must be underpinned by greater investment in training and education for all staff involved in end of life care.
“Health Education England urgently needs to take up the gauntlet on this front,” he said, noting that in July a Royal College of Nursing survey found a quarter of nurses had no specific training in end of life care, despite regularly supporting dying people.
Claire Henry, chief executive of the National Council for Palliative Care, 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,” she stated.
But she added: “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.”
Professor Bill Noble, medical director at Marie Curie, said: “We welcome the new guidelines and the ambition to ensure that care at the very end of life is provided in a compassionate and informed way that reflects the individual needs and wishes of the patient.
“However, without implementation, including effective training for staff, these latest guidelines will fail to deliver a genuine shift in attitudes and care,” he warned.
NICE is also developing best practice guidelines on end of life care for infants, children and young people and updating existing guidance on how to deliver services to improve supportive and palliative care in adults.
These are expected to be published in 2016 and 2018, respectively