The guidelines aim to put the dying person at the heart of decisions about their care, so that they can be supported in their final days in accordance with their wishes.
Around 500,000 people die each year in the UK. Of these deaths 75% are not sudden, but expected.
While a recent report has ranked end of life care in the UK as the best in the world, there are areas where care can be improved and made more consistent.
Until recently, the Liverpool Care Pathway (LCP) was used to provide good end of life care. It was withdrawn however, following widespread criticism and a subsequent government review that found failings in several areas. Among the criticisms were:
- There were no ways of reliably determining whether a person was in the last days of life
- Drinking water and essential medicines may have been withheld or withdrawn
- Examples of changes to treatment were carried out without forewarning
As a result, NICE was asked to develop evidence-based guidelines on care of the dying adult. The new guideline aims to tackle these and other issues by providing recommendations for the care of a person who is nearing death no matter where they are.
Recognising when a person might be entering the last days of life
It can be difficult to be certain whether a person is dying, as the ways in which people deteriorate at the end of life can vary and depend on a person’s condition.
To help identify the last days of life, the guideline recommends that healthcare professionals should assess for changes in certain signs and symptoms. These include agitation, deterioration in level of consciousness and increasing fatigue and loss of appetite.
Healthcare professionals should be aware that appearance of these signs and symptoms might suggest that a person is dying, but improvements can occur suggesting that a person may be stabilising.
People should be monitored for further changes at least every 24 hours, and the person’s care plan should be updated accordingly.
Ensure good communication and shared decision-making
Earlier this year the Parliamentary Health Service Ombudsman highlighted that poor communication was an important aspect in complaints over care at the end of life.
The report said that healthcare professionals do not always have open and honest conversations with family members and carers that are necessary for them to understand the severity of the situation and the choices they will have to make.
Consequently, NICE recommends the dying person, and those important to them should be given accurate information about their prognosis, an opportunity to talk through fears and anxieties, information about how to contact members of their care team, and opportunities for further discussion.
Healthcare professionals should actively participate in shared decision-making on a person’s end of life care, and a named lead healthcare professional should be made responsible.
Further recommendations cover individualised care, providing individual care plans, and ensuring that shared decision making is supported by experienced staff
Supporting people at the end of life to drink if they want to
Among the criticisms levelled at the LCP were that too often it was being poorly implemented, leading to people becoming dehydrated.
NICE recommends that the dying person should be supported to drink if they wish and are able to.
In addition, 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.
An individualised rather than a ‘blanket’ approach to care
Professor Sam Ahmedzai, Emeritus Professor of palliative medicine and chair of the guideline development group, said “Until now we have never had guidelines in this country on how to look after people at the end of life. This evidence-based guideline provides a good overview of how to give good end of life care in any setting in the NHS. “
He added: “The main way this guideline differs to the LCP is that it stresses an individualised approach rather than a ‘blanket’ method of using the LCP in an unthinking way. The guideline also stresses that the patient should be reviewed daily, and the person should always be taken as an individual.”
Annette Furley, a member of the guideline group who provides support both to people nearing the end of their lives and those important to them, said: “Together as health and social care professionals we should all be offering the best care – whether that’s clinical or practical – in order to support people’s experience of a good death.
“People that I and my colleagues have supported all share a desire to die peacefully, without pain, and without unnecessary discomfort, with control and with dignity. I believe that this guideline will help enable people to do that.”
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.”