NICE launches end of life guidance to replace Liverpool Care Pathway
Guidelines on care for dying adults emphasise importance of individualised care plans
Nurses must ensure dying patients have individualised care plans that take into account their needs and wishes, according to new guidance on caring for people in the final days of life.
The recommendations replace the controversial end of life framework the Liverpool Care Pathway (LCP), which was withdrawn in England last year after a government review.
This found serious failings in how the pathway was being implemented and has led to today’s publication of the Care of Dying Adults in the Last Days of Life guidelines by the National Institute for Health and Care Excellence (NICE).
The new guidelines go ‘above and beyond’ the LCP, according to the expert group, which developed it.
NICE independent committee member and district nurse Susan Dewar said the new guidance puts dying people at the heart of care with individualised plans.
Ms Dewar said the new approach was not just about ‘asking a question and ticking a box’.
'I have looked after people who are dying all my working life and one thing that nurses do well is listening,’ said Ms Dewar, who has been a nurse for 50 years.
‘In the last few days when [someone is] dying, it is very important that nurses take this individualised approach and put the person at the centre.’
Ms Dewar added that she hoped the new guidance gave all nurses the confidence to provide high quality nursing care in the last few days of life.
‘The recommendations for further research offer nurses an exciting challenge which I hope many will grasp and take forward,’ she said.
NICE independent committee member Annette Furley provides support to people nearing the end of their lives.
‘It is really important to establish how people want to be involved,’ said Ms Furley.
‘We have tried to highlight the importance of honesty and transparency so that care plans can be put together that are realistic.’
The LCP was criticised as it sometimes involved the withdrawal of food and fluids from dying patients and was withdrawn after it emerged some families were not told their loved one was on the pathway.
The NICE guidance makes recommendations on hydration and prescribing medicine, how to communicate with people at the end of life, and recognising when death is imminent.
• Routine tests unlikely to affect care in the last few days of life should be avoided.
• Advice from more experienced colleagues should be sought if there is uncertainty about whether a person is entering last days of life, stabilising or recovering.
• Dying people should be supported to drink if they wish and are able to, and mouth and lip care should be included in the plan if needed.
• Healthcare professionals should assess patients’ hydration status daily to review the need for clinically assisted hydration, and risks and benefits discussed.
• Clear communication between healthcare professionals, the dying person and those important to them should lead to individualised care plans.
• Medication should be reviewed and any drugs that are prescribed in anticipation of a person dying, should be based on likely future symptoms, not in a blanket fashion.
There is a series of recommendations to manage common end of life symptoms, including nausea and vomiting, pain, breathlessness, noisy respiratory secretions and anxiety, agitation and delirium.
NICE independent committee chair and emeritus professor of palliative medicine Sam Ahmedzai called the guidelines a ‘humane and evidence-based framework’.
‘A lot of people assume doctors and nurses can diagnose when someone is dying – it is not as precise as that,’ explained Professor Ahmedzai.
‘There is actually a lot of uncertainty about whether someone is going to be dying in the next few days.
‘When any health professional thinks someone is dying, [they] should gather evidence.’
Professor Ahmedzai said this evidence should include information about the patient’s medical and social background, as well as signs and symptoms.
He said the intentions behind the LCP had been well meaning, but argued that the pathway was based on a model of hospice care that did not transport across NHS settings.
‘[On a] busy hospital ward, staff are often under-resourced and do not have the training, in a hospice, everybody has specialist training in care of the dying.’
He added that the LCP had not been based on research evidence.
‘Unfortunately, no evidence was gathered to support the use of the pathway; now we have got evidence-based guidelines, albeit sometimes there are gaps.
‘We feel we have got a good overview of how to give good end of life care in the NHS.’
Hospice UK national director for hospice care Ros Taylor voiced concerns that the guidelines’ communication focus was ‘aspirational’ without more education and training for healthcare staff.
But, members of the expert group pointed to online learning resources signposted throughout the guidelines.
NICE deputy chief executive Gillian Leng said there was financial benefit for trusts in putting training in place, as the guidelines could ensure some people stayed out of hospital.
RCN lead for long-term conditions and end of life care Amanda Cheesley said nurses had found it difficult since the abolition of the LCP without guidance to help them deliver compassionate end of life care.
She said: 'Some areas have already made big strides in developing local protocols.
'All teams should have local systems in place, and the new NICE guidance, while not being a full replacement for the LCP, will provide the help to do this.
'The RCN's end of life resources are also available to all nurses.'
Read the NICE guidance here