Did you seek assistance for writing your advance directive? A qualitative study

BACKGROUND: The completion of an advanced directive is paired with a high degree of self-responsibility of the signatory. It requires anticipation of probably complex medical situations. In the literature, the family physician is often seen as the most important person for advice when writing an advance directive. But little is known about whether or not patients want to involve medical advisors and to what extent physicians are willing to give advice. The aim of this study was to analyse whether or not individuals approached advisors for the completion of their advance directive, whom they chose and which reasons were given for seeking or foregoing assistance. METHODS: Semi-structured interviews with healthy individuals, chronically ill individuals and patients in palliative care including questions associated with advice for completing an advance directive (8/2008-7/2009). Inclusion criteria: age 55-70 years and advance directive a parts per thousand yen3 months old. The interviews were fully transcribed according to standard transcription rules and analysed applying an inductive category development. RESULTS: Interviews were conducted with 53 probands (healthy n = 20, chronically ill n = 17, palliative care patients n = 16); 18 probands were male. Mean age was 63.2 +/- 4.4 years (range 55-70 years). Professional advice was sought by 12 probands (physician = 2, nurse = 1, lawyer/notary = 8, self-employed advisor = 1), another 8 probands included family members. In 17 cases, the physician knew the proband's advance directive, 36 probands never told their doctor about its existence. Categories of reasons for seeking or foregoing advice were trust/lack of trust, autonomy, rejection and financial considerations. CONCLUSIONS: Information about the medical implications concerning patient preferences for end-of-life care seems not to be the main focus of interest when individuals write an advance directive. Autonomy and trust into notarially certified documents seem to be more important matters. If family physicians want to have a role in their patients' completing of an advance directive, they should proactively get in touch with them.