title: To what extent are the wishes of a signatory reflected in their advance directive: a qualitative analysis.
abstract: BACKGROUND
  Advance directives (ADs) are assumed to reflect the patients' preferences, even if these are not clearly expressed. Research into whether this assumption is correct has been lacking. This study explores to what extent ADs reflect the true wishes of the signatories.
  
  
  METHODS
  Semi-structured interviews (INT), pretest. Transcribed INT and the contents of ADs were inductively categorised (Mayring) and triangulated. Software: MAXQDA 2007.
  
  
  METHODS
  Patients receiving palliative care (PPC), healthy (H) and chronically ill (CI) individuals with an AD completed ≥3 months prior to recruitment.
  
  
  RESULTS
  Between 08/2008 and 07/2009, 53 individuals (20 H, 17 CI, 16 PPC) were interviewed (mean age 63.2 years (55-70 years)), 34% male). Most important (in)consistencies between preferences as expressed in INT compared to ADs included preconditions for termination/rejection of life-sustaining measures, refusal of/demand for medical interventions and the nomination of proxies. Standardized AD forms were rarely tailored to the individual. We found a high tendency to use set phrases, such as want to die with dignity or do not want to suffer/vegetate. Likely events in the course of an existing progressive disease were not covered, even in ADs of PPC close to death.
  
  
  CONCLUSIONS
  Only some of the incongruities between verbally expressed preferences and the contents of the AD can be put down to use of standardized forms or lack of medical knowledge. Nevertheless, the non-involvement of a doctor in the process of making an AD must be seen as potentially problematic and seeking medical advice should be promoted by politics and physicians. Standardised forms should encourage amendments and present space for free text entries for all aspects covered. Set phrases need to be defined by the individual to enable them to be translated into a specific course of action.
authors: Friedemann
authors: F
authors: Nauck
authors: Matthias
authors: M
authors: Becker
authors: Claudius
authors: C
authors: King
authors: Lukas
authors: L
authors: Radbruch
authors: Raymond
authors: R
authors: Voltz
authors: Clinic for Palliative Medicine, University Medical Centre, Robert-Koch-Str, 40, 37075 Göttingen, Germany. Birgit.Jaspers@med.uni-goettingen.de.
authors: Birgit
authors: B
authors: Jaspers
mesh_terms: D016223:Advance Directives / Q000941:ethics*; D000368:Aged; D003142:Communication; D016638:Critical Illness; D005195:Family Relations; D005260:Female; D006801:Humans; D008020:Life Support Care / Q000941:ethics*; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000941:ethics*; D010358:Patient Participation; D017060:Patient Satisfaction; D010817:Physician-Patient Relations / Q000941:ethics*; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D009626:Terminology as Topic