Hematologists’ perspective on Advance Directives, a French national prospective cross-sectional survey – the ADORE-H Study

Abstract Background: The onset of hematological malignancy can lead to acute and critical situations. It can also lead to adverse outcome despite the major advancements made in their therapeutic management. In this context, advance care planning and, in particular, advance directives (AD) play an essential role. However, using AD in patients with malignant hemopathies remains very rare. Methods: The aim was to evaluate the perception of AD by hematologists. We made a French national online survey. All hematologist working in a hospital setting ant treating malignant hemopathies were solicited. The questionnaire covered 5 areas: personal perception of AD; assistance in writing AD; patient information about AD; use of ADs; demographic data. Results: 318 hematologists (33.7% of the whole population), working in 103 different centers across France participated in the study. 72.6% (n=231) of the respondents considered that AD could be interesting for patient’s care. Only 32.7% talked about AD with their patients on a regular basis. The lack of use was correlated with the fear of creating anxiety for the patient (64.9%; n = 172) or in relatives (30.9%; n = 80), or the fact that AD were deemed to be inappropriate in their patients (57.8%; n = 145). 19.5% (n = 62) of the responding hematologist offer patients their help to write AD. This proportion is higher in physicians who previously work in palliative care unit (35,6 % vs 16,8 %, p = 0,0004). Interpretation: The majority of the interrogated hematologist have a positive opinion on AD, but only a few of them break the matter to their patients. The fear of patients and relatives’ consequences, especially anxiety, remains the main limit to information about AD.