Article Text

Download PDFPDF
European palliative care guidelines: how well do they meet the needs of people with impaired cognition?
  1. E L Sampson1,2,
  2. J T van der Steen3,
  3. S Pautex4,
  4. P Svartzman5,
  5. V Sacchi6,
  6. L Van den Block7 and
  7. N Van Den Noortgate8
  1. 1Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, London, UK
  2. 2Liaison Psychiatry, North Middlesex University Hospital, Barnet Enfield and Haringey Mental Health Trust, London, UK
  3. 3Department of General Practice & Elderly Care Medicine, VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands
  4. 4Department of Community Medicine, Primary Care and Emergency Medicine, Geneva University Hospitals and University of Geneva, Switzerland
  5. 5Family Medicine Department, Ben-Gurion University of the Negev, Beersheba, Israel
  6. 6Peter Hodgkinson Centre, Lincoln County Hospital, Lincoln, UK
  7. 7Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Brussels, Belgium
  8. 8Department of Geriatric Medicine, Ghent University, Ghent, Belgium
  1. Correspondence to Dr E L Sampson, Division of Psychiatry, Marie Curie Palliative Care Research Department, University College London, 67-71 Riding House Street, London W1W 7EJ, UK; e.sampson{at}


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.

  • Palliative care
  • Pain
  • Dementia
  • Cognitive Impairment
  • Intellectual Disability
  • Clinical Guidelines

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.