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 It was withdrawn however, following widespread criticism and a subsequent Government review that found failings in several areas.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- Drinking water and essential medicines may have been withheld or withdrawn.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. A 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.
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.
Previously, 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.
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 while 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.
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.”
For further information, visit: www.nice.org.uk
