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Symptom management for the adult patient dying with advanced chronic kidney disease: A review of the literature and development of evidence-based guidelines by a United Kingdom Expert Consensus Group

Ninewells Hospital, Dundee clairedouglas{at}nhs.net

FEM Murtagh

King's College London, London

EJ Chambers

Southmead Hospital, Bristol

M Howse

Royal Liverpool Hospital, Liverpool

J Ellershaw

University of Liverpool, Liverpool; Marie Curie Palliative Care Institute, Liverpool

Abstract

Improvement in end-of-life-care is required for patients dying with chronic kidney disease (CKD). The UK government now recommends that tools such as the Liverpool Care Pathway for the Dying Patient (LCP) be used to enhance the care of those patients dying with CKD. The LCP was originally developed for patients dying with terminal cancer, however has been shown to be transferable to patients dying with heart failure or stroke. On this background, in 2005 a UK National Renal LCP Steering Group was formed. The aim was to determine whether or not the generic LCP was transferable to patients dying with CKD. An Expert Consensus sub-group was established to produce evidence-based prescribing guidelines to allow safe and effective symptom control for patients dying with renal failure. These guidelines were finalised by the Expert Consensus group in August 2007 and endorsed by the Department of Health in March 2008. A literature search on symptom control and end-of-life care in renal failure was performed. A summary of the evidence was presented at a National Steering Group meeting. Opinions were given and provisional guidelines discussed. A first draft was produced and individually reviewed by all members of the Expert Group. Following review, amendments were made and a second draft written. This was presented to the entire National Steering Group and again individual comments were taken into consideration. A third and fourth draft were written and individually reviewed, before the guidelines were finalised by the Expert Consensus group. Patients dying with advanced CKD suffer symptoms similar to patients dying of cancer. The Renal LCP prescribing guidelines aim to control the same symptoms as the generic LCP: pain, dyspnoea, terminal restlessness and agitation, nausea and respiratory tract secretions. The evidence for the production of the guidelines is discussed and how a consensus was reached. A summary of the guidelines is given and the complete guidelines document is available via the Marie Curie Palliative Care Institute, Liverpool website.

Key Words: kidney disease • symptoms • symptom management • guidelines • dying • opioids

Palliative Medicine, Vol. 23, No. 2, 103-110 (2009)
DOI: 10.1177/0269216308100247


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