Advance directives: ethical issues of information to patients and caregivers training

Background: If the law called "Leonetti'' enacted in 2005 allows patients to prepare and submit their advance directives (AD), its ownership in hospital services is still very punctual, even in clinical hematology services where illnesses are severe and can be life-threatening. The objective of our study was to evaluate the impact of a dual approach: caregiver training and information to patients on AD. The secondary objectives are to analyze the obstacles to their appropriation by caregivers and better understanding of the meaning patients give to the AD. Method: Establishment of a proactive approach in a clinical hematology service to encourage discussions about AD and proxy (PC). This multi-professional approach and multi-step was done from 2008 to 2016 targeting both caregiver training and information for patients and their families. The indicator chosen was a joint analysis of both quantitative number of PC and AD traced and collected in the medical records of all patients with malignancies of 2 consecutive periods in 2010 and 2012. A qualitative analysis was conducted among caregivers on the brakes to their ownership and content of DA collected within the service to determine the use of DA by patients. Results: Of the samples, respectively 80 and 197 patients, the percentage of patients who designate a PC is equivalent (from 63 % to 64.5 %) however AD increased from 0 % to 6.1 %. Despite the modest features of these results, they are well above the 2.5 % reported by INED. Qualitative analysis of 6 AD brings up two main themes: the patient's wishes for his care (therapeutic limitation and management of pain) associated or not with personal messages. The qualitative interviews with carers highlighted five obstacles to their ownership: ignorance of the law of general public, the barrier of writing, the lack of anticipation, the fear of death and difficulties to discuss end of life issues. Conclusion: The law that would register at the societal level strengthening patient self-determination rights is not an easy application because it is not fully known. Our questioning concerns the meaning that patients give to AD, which does not only correspond to the proportionality of care and end of life. An authentic appropriation of AD is possible but requires time, support and better social distribution upstream.