title: Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities: dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process.
abstract: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians.
  
  
  
  This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures.
  
  
  
  The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians.
  
  
  
  The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.
authors: Maasveld, Koraalgroep, Maastricht, The Netherlands.|Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.|CAPHRI (School of Primary Care and Public Health), Maastricht University Medical Centre, Maastricht, The Netherlands.
authors: A M A
authors: AM
authors: Wagemans
authors: CAPHRI (School of Primary Care and Public Health), Maastricht University Medical Centre, Maastricht, The Netherlands.|Department of Primary and Community Care, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.
authors: H M J
authors: HM
authors: van Schrojenstein Lantman-de Valk
authors: Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.|CAPHRI (School of Primary Care and Public Health), Maastricht University Medical Centre, Maastricht, The Netherlands.|RVE Patient & Care, University Hospital Maastricht, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors: I M
authors: IM
authors: Proot
authors: Maasveld, Koraalgroep, Maastricht, The Netherlands.
authors: A M
authors: AM
authors: Bressers
authors: Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.|RVE Patient & Care, University Hospital Maastricht, Maastricht University Medical Centre, Maastricht, The Netherlands.|Department of Family Medicine, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors: J
authors: J
authors: Metsemakers
authors: Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.|Division of Population Health Sciences and Education, St George's University of London, London, United Kingdom.
authors: I
authors: I
authors: Tuffrey-Wijne
authors: Radboud University Nijmegen Medical Centre, Department of Anesthesiology, Pain and Palliative Medicine, Nijmegen, The Netherlands.
authors: M
authors: M
authors: Groot
authors: Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.|CAPHRI (School of Primary Care and Public Health), Maastricht University Medical Centre, Maastricht, The Netherlands.|Department of Clinical Genetics, Maastricht University Medical Centre, Maastricht, The Netherlands.
authors: L M G
authors: LM
authors: Curfs
mesh_terms: D000328:Adult; D032722:Advance Care Planning / Q000592:standards*; D000066491:Clinical Decision-Making / Q000379:methods*; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D009426:Netherlands; D010820:Physicians; D036301:Qualitative Research; D016414:Resuscitation Orders
keywords: Do-Not-Attempt-Resuscitation; advance care planning; decisions; end of life; ethics; intellectual disability; palliative care