title: European palliative care guidelines: how well do they meet the needs of people with impaired cognition?
abstract: OBJECTIVE
  Numbers of people dying with cognitive impairment (intellectual disability (ID), dementia or delirium) are increasing. We aimed to examine a range of European national palliative care guidelines to determine if, and how well, pain detection and management for people dying with impaired cognition are covered.
  
  
  METHODS
  Questionnaires were sent to 14 country representatives of the European Pain and Impaired Cognition (PAIC) network who identified key national palliative care guidelines. Data was collected on guideline content: inclusion of advice on pain management, whether cognitively impaired populations were mentioned, assessment tools and management strategies recommended. Quality of guideline development was assessed with the Appraisal of Guidelines Research and Evaluation (AGREE) instrument.
  
  
  RESULTS
  11 countries identified palliative care guidelines, 10 of which mentioned pain management in general. Of these, seven mentioned cognitive impairment (3 dementia, 2 ID and 4 delirium). Half of guidelines recommended the use of pain tools for people with cognitive impairment; recommended tools were not all validated for the target populations. Guidelines from the UK, the Netherlands and Finland included most information on pain management and detection in impaired cognition. Guidelines from Iceland, Norway and Spain scored most highly on AGREE rating in terms of developmental quality.
  
  
  CONCLUSIONS
  European national palliative care guidelines may not meet the needs of the growing population of people dying with cognitive impairment. New guidelines should consider suggesting the use of observational pain tools for people with cognitive impairment. Better recognition of their needs in palliative care guidelines may drive improvements in care.
authors: Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, London, UK Liaison Psychiatry, North Middlesex University Hospital, Barnet Enfield and Haringey Mental Health Trust, London, UK.
authors: E L
authors: EL
authors: Sampson
authors: Department of General Practice & Elderly Care Medicine, VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands.
authors: J T
authors: JT
authors: van der Steen
authors: Department of Community Medicine, Primary Care and Emergency Medicine, Geneva University Hospitals and University of Geneva, Switzerland.
authors: S
authors: S
authors: Pautex
authors: Family Medicine Department, Ben-Gurion University of the Negev, Beersheba, Israel.
authors: P
authors: P
authors: Svartzman
authors: Peter Hodgkinson Centre, Lincoln County Hospital, Lincoln, UK.
authors: V
authors: V
authors: Sacchi
authors: Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
authors: L
authors: L
authors: Van den Block
authors: Department of Geriatric Medicine, Ghent University, Ghent, Belgium.
authors: N
authors: N
authors: Van Den Noortgate
mesh_terms: D003072:Cognition Disorders / Q000523:psychology*; D003693:Delirium / Q000523:psychology; D003704:Dementia / Q000523:psychology; D005060:Europe; D006301:Health Services Needs and Demand / Q000592:standards*; D006801:Humans; D059408:Pain Management / Q000523:psychology / Q000592:standards; D010147:Pain Measurement / Q000379:methods / Q000592:standards; D010166:Palliative Care / Q000523:psychology / Q000592:standards*; D017410:Practice Guidelines as Topic; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology / Q000592:standards*
keywords: Clinical Guidelines; Cognitive Impairment; Dementia; Intellectual Disability; Pain; Palliative care