The National Institute for Health and Care Excellence (NICE) have published new guidance on end of life care services. It describes how end of life care services should be provided for adults with any conditions or diseases. This includes the care and support given in the final weeks and months of life and the planning and preparation for this. For some conditions, this could be months or years.
The guideline makes it clear that people approaching the end of their life must have the opportunity to be involved in decisions around the care they receive and are able to plan in advance. Assessments of needs must be holistic and consider all medical, psychological and social needs. It is important that assessment of needs should be reviewed and changes made as appropriate. The need for regular review also applies to medical treatment provided.
People should have access to information that would be of most help to them and it is acknowledged that individuals will vary in terms of what information they want and at what point. Staff should have the skills to make assessments of what information to provide, in what format and at what point.
Good coordination between the different specialists providing end of life care is crucial and the guideline makes it clear that communication, information sharing and good coordination between services must be in place. This is likely to involve primary care, specialist services, (e.g. renal services) and specialist palliative care services. The staff providing end of life care must have the training and skills required to do so.
It is vital that kidney patients receive good end of life care and are supported in any decisions they make regarding moving to supportive care. Kidney Care UK provided input to the NICE guidelines to ensure it addressed the needs of kidney patients.
Kidney Care UK Policy Director, Fiona Loud said, "We support the guidelines and will monitor whether it provides the impetus for kidney specialists to work more closely with palliative care specialists and others to support the provision of good quality end of life care, regardless of the setting in which a person is receiving it. Input from kidney specialists can give staff the confidence to prescribe pain relieving drugs not normally recommended for kidney patients when that patient is at the end of their life. In addition, we would encourage assessments of information needs to consider the need for disease specific information, in our case kidney disease, from specialist organisations.
"We particularly welcome the cross reference to the organ donation NICE guideline. This specifies that organ donation should be considered as a usual part of 'end-of-life care' planning and that all patients who are potentially suitable donors are identified as early as possible, through a systematic approach."