There is growing recognition of the importance of the care that is given to people as they approach the end of their lives as well as their care during both acute and chronic illness. Nationally this was promoted through the publication in July 2008 of a National End of Life Strategy1 which sought to raise the quality of end of life care for adults whatever the disease they suffered from and in what ever setting they lived or were being cared for. Importantly this document emphasised that the need for end of life care is not confined to the last days of life; recognising that an individual may have increased need for support and palliative care in the last months and weeks of their life. This led to the definition below
Helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support.
Source: National Council for Palliative Care 2006
The Renal NSF Part 2 which was published prior to this in 20052 has an End of Life Module which states that: “people with established renal failure should receive timely evaluation of their prognosis, information about the choices available to them, and for those near the end of life a jointly agreed palliative care plan, built around their individual needs and preferences and sets out 6 markers of good practice which can be summarised as:
Thus prior to the National Strategy on End of Life Care; the importance of care in the time approaching the end of life was recognised by the renal community and following its publication NHS Kidney Care published a document: End of Life Care in Advanced Kidney Disease: A framework for Implementation3 in June 2009. This, while being based on the key elements in the National Strategy, relates specifically to patients with advanced kidney disease. It concerns the care of people who choose not to receive dialysis (now called “conservative kidney care”) while receiving all other aspects of care for their kidney condition; those who choose to stop dialysis and those who continue to dialyse but who are deteriorating on account of the other illnesses they also suffer from. The breadth it covers is illustrated in the diagram below; Fig 1.
It seems obvious to say, but if it is not recognised that someone may be approaching the end of their life, then appropriate discussions cannot take place and any additional supporting services cannot be mobilised. It is suggested that kidney units develop ways of systematically identifying those in need and then recording them on a register. This is so that their needs can be assessed (along with their carers); they can be given the opportunity for advance care planning and most importantly key decisions regarding their preferences can be communicated, with their consent, with relevant medical and nursing teams particularly their primary care team. Primary care teams now keep such registers for their patients so it is important that patients with advanced kidney disease are included where appropriate
Advance Care Planning is a voluntary process of discussion between an individual, those close to them (family and friends) and professionals involved in their care about preferences and priorities for their future care. Such discussions can include decisions about stopping dialysis (or not ever starting it) or what sort of treatment someone would want if the time came when they could not make decisions for themselves and the kind of care that they would and would not want when they come towards the end of their life including care in the final days of life.
This is an important way of increasing the likelihood of people receiving the care they would choose should they become unable to make decisions for themselves (through ill health). If someone’s wishes are known it is more likely medical teams will be able to provide care that reflects the kind of care they would wish for. The best time to think about these things is when people are well or relatively well4 and some dialysis units are introducing advance care planning for all dialysis patients, once settled on dialysis and all patients who choose the conservative pathway.
These follow naturally from an assessment of the individual’s needs and agreeing with them their priorities and how symptoms or support needs can be responded to in conjunction with community services. Once services are aware that someone is in the last stages of life systems can be put in place for rapid access to care and appropriate response to emergencies. Plans can be made to try to achieve care at home for individuals who have expressed a wish for home end of life care.
To support improved end of life care for patients with advanced kidney disease three test sites have been funded by NHS Kidney Care to develop and implement the recommendations within End of Life Care in Advanced Kidney Disease: A framework for Implementation5 The sites will complete this work by late 2011 and through the development of local services the outcomes of the project will be used to stimulate and inform the delivery of high quality end of life care for advanced kidney disease across England using the lessons learned and the tools developed.
The key deliverables5 from this project mirror the elements of the strategy and its implementation and are summarised below
While recognising that there is still much to be done to improve the care pf people as they approach the end of their lives; it is clear the renal community is working towards this improved care and ways of working that will help teams embed this care into the routine care of their patients are being developed
Clinical Advisor in kidney End of Life care; Richard Bright Renal Unit, Southmead Hospital, North Bristol Trust
NKF Controlled Document No. 217, End of Life Care for people with advanced kidney disease, written 20 June 2006. Last reviewed 23 September 2010.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511.
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Page created: 20 June 2006
Last updated: 27 February 2011