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End of Life Care for people with advanced kidney disease

Written in September 2010 by Dr. E Joanna Chambers, Clinical Advisor in kidney End of Life care, Richard Bright Renal Unit, Southmead Hospital, North Bristol Trust and Reviewed January, 2013 by Dr. F. Murtagh, Consultant and Clinical Senior Lecturer in Palliative Care, Kings College, London


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

End of life care is care that:

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 stated 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".

It 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

So even before the publication of the National Strategy on End of Life Care, the importance of care approaching the end of life was recognised by the renal community. Following this, NHS Kidney Care published a document: End of Life Care in Advanced Kidney Disease: A framework for Implementation3 in June 2009. This was based on the key elements in the National Strategy, but related specifically to patients with advanced kidney disease. It concerns the care of:

  1. People who choose not to receive dialysis (now called "conservative kidney care") while receiving all other aspects of care for their kidney condition
  2. Those who choose to stop dialysis
  3. Those who continue to dialyse but who are deteriorating on account of the other illnesses

This is illustrated in the diagram below; Fig 1.

diagram

Subsequently, NHS Kidney Care asked three teams across England to test the best way to apply the recommendations made in the End of Life Care in Advanced Kidney Disease: A framework for Implementation3. These teams undertook detailed work with kidney patients, their families, and the professionals involved in providing care, to establish the best ways to improve care. Their recommendations can be read in the publication NHS Kidney Care. Getting it right: End of life care in advanced kidney disease. London, UK: Department of Health 2012, available at:

http://www.endoflifecare.nhs.uk/search-resources/resources-search/publications/imported-publications/end-of-life-care-in-advanced-kidney-disease.aspx

The key deliverables from these projects mirror the elements of the strategy and its implementation and are summarised below:

  • Timely identification of kidney patients approaching end of life, in order to better address any supportive and palliative care needs
  • Detailed assessment of care needs either in primary care or by key members of the renal team, with regular review
  • Key staff trained in assessment of supportive and palliative care needs and advance care planning
  • Advance care planning initiated and facilitated in accordance with patients
NKF Controlled Document No. 217: End of Life Care for people with advanced kidney disease written: 20/06/2006 last reviewed: 01/01/2013