The National Institute for Health and Care Excellence (NICE) has published a draft guideline to support the NHS in providing high quality and compassionate care for people who are dying.
About 500,000 people die each year in England. It’s thought that the majority of these deaths – approximately 3 in 4 – are expected, but recognising when death is imminent can be challenging. The NICE guideline, which is in development, will help doctors and nurses identify when someone is entering their final few days of life.
It also provides guidance about the management of some common symptoms that may be experienced at the end of life, and places the individual and their loved ones at the heart of decisions about their care.
The draft NICE guideline, which has been published for consultation, 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. The NICE guideline begins to provide some guidance around clinical care in the last days of life in its place.
Sir Andrew Dillon, NICE Chief Executive, 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 guideline, which NICE has published for consultation, makes a series of recommendations. These include:
- Recognising when somebody is approaching the end of their life. The draft guideline lists signs and symptoms that may suggest a person is nearing death; the level of information that should be collected; and the sort of changes that may indicate if the person is recovering or deteriorating
- Clear communication. Recommendations include establishing the communication needs and expectations of the dying person; making sure that appropriate records are kept; and that a confident and competent healthcare professional discusses the person’s prognosis with them and shares the information with other relevant health and social care professionals. The draft guideline also promotes shared decision making and recommends that individualised care plans are created with each dying person, their family and those important to them, and the multidisciplinary team.
- Fluid intake. The draft NICE guideline says that people who are in their last days of life should be encouraged to drink if they wish to and are able to. If considered beneficial to them, people in their last days of life should receive assisted hydration, but this should be monitored at least once a day and fluids reduced or stopped if there is any sign of harm or no sign of benefit. People should also be given frequent mouth care.
- Medication prescribing. The draft guideline sets out a series of recommendations for the prescribing of medicines if these are needed to manage some of the common symptoms experienced at the end of life. These include nausea and vomiting; pain; breathlessness; noisy respiratory secretions; and anxiety, agitation and delirium. The guideline says that people who are dying or those important to them should be fully involved in decisions about medicines for managing symptoms in the last days of life. The guideline also recommends that healthcare professionals review a person’s medication and stop any medicines that are not providing symptomatic benefit. Specialist palliative care advice should be sought if treatment does not seem to be working.
The consultation for the draft NICE guideline will remain open until Wednesday 9 September 2015. Comments will then be reviewed before the final guideline is published for NHS use.
NICE is also currently developing best practice guidelines for the NHS on end of life care for infants, children and young people, and guidance on how to deliver services to improve supportive and palliative care for adults. These are expected to publish in 2016 and 2018 respectively.