To what extent are the wishes of a signatory reflected in their advance directive: a qualitative analysis
- Equal contributors
1 Clinic for Palliative Medicine, University Medical Centre, Robert-Koch-Str. 40, 37075 Göttingen, Germany
2 HAWK Hildesheim/Holzminden/Göttingen, University of Applied Sciences and Arts, Faculty of Social Work and Health, Brühl 20, R. 03, 31134 Hildesheim, Germany
3 Department of Palliative Medicine, University Hospital Bonn, Sigmund-Freud-Str. 25, 53127 Bonn, Germany
4 Department of Palliative Medicine, University Hospital Cologne, Dr.-Mildred-Scheel House, Kerpener Straße 62, 50937 Cologne, Germany
BMC Medical Ethics 2014, 15:52 doi:10.1186/1472-6939-15-52Published: 30 June 2014
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.
Semi-structured interviews (INT), pretest. Transcribed INT and the contents of ADs were inductively categorised (Mayring) and triangulated. Software: MAXQDA 2007. Participants: Patients receiving palliative care (PPC), healthy (H) and chronically ill (CI) individuals with an AD completed ≥3 months prior to recruitment.
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.
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.