End of Life Care for people with advanced kidney disease

Article by Dr E Joanna Chambers, Clinical Advisor in kidney End of Life care; Richard Bright Renal Unit, Southmead Hospital, North Bristol Trust.

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

Box 1: A Working Definition of End of Life Care from National End of Life Strategy

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:

1. Access to communication skills and knowledge of symptom control
2. Offering prognostic assessment
3. Timely information and joint palliative care plan
4. Ongoing medical care for patients opting not to dialyse
5. Dying with dignity
6. Culturally appropriate bereavement support

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.

Identifying people and a register of those in need

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 and its relevance to advanced kidney disease

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.

Care Planning and Co-ordination of Care

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

• Timely identification of kidney patients approaching end of life with supportive care and palliative care needs
• Assessment of care needs either in primary care or by key members of the renal team
• Care needs documented on register held within renal centres (cause for concern register) and GP supportive care registers (Gold standards register or equivalent)
• Advance care planning initiated and facilitated in accordance with patients’ wishes, using local preferred priorities of care (PPC) documentation
• Key staff trained in assessment of supportive care needs and advance care planning
• Improvement in coordination of care across kidney and primary care interface
• Patient and carer information and support for end of life care developed
• Patients approaching the end of their lives will be cared for and die in the place of their choice.

Conclusion

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

Dr E Joanna Chambers.

Clinical Advisor in kidney End of Life care; Richard Bright Renal Unit, Southmead Hospital, North Bristol Trust

References

1. Department of Health. End of Life Strategy. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277. accessed Sept 11^th 2010
2. National Service Framework for Renal Services - Part Two: Chronic kidney disease, acute renal failure and end of life care part 2. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4101902. accessed Sept 11^th 2010
3. End of Life Care in Advanced Kidney disease - A framework for Implementation - 2009
4. Bailey E. Dying Matters. Kidney Life. Autumn 2010
5. http://www.kidneycare.nhs.uk/_Ourworkprogrammes-Conservativekidneycare-EndofLifeCareinAdvancedKidneyDisease.aspx accessed Sept 11^th 2010.

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.

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