Abstract
BackgroundIn France, advance directives are favourably perceived by most of the population, although the drafting rate is low. This ambivalence is challenging because advance directives are meant to promote the autonomy and freedom of choice of patients. The purpose of this study was to analyse the content of advance directives written by patients suffering from malignant haemopathies to better understand how patients put them into practice. These could be relevant as early as the initial diagnosis of haematological malignancies because of the uncertain course of the disease.MethodsThis was a multicentre, qualitative, descriptive study. The advance directives written by patients with malignant haemopathies treated in one of the six French hospital departments were included in the study from 01/06/2008 to 15/04/2016. A thematic analysis of the advance directives was performed by two researchers: a senior haematologist and a research assistant.ResultsThe median age of the patients was 69. Most were women (sex ratio: 0.59), living as a couple (57%), with lymphoid pathologies (66%), who were still alive two years after the instructions were written (63%) and had nominated a health care proxy (88.6%). Free texts (62.9%) were richer in content than pre-defined forms. The advance directives were used in three ways: for a purely legal purpose, to focus on medical treatments or actions, or to communicate a message to the family. Three main themes emerged: (1) refusal of medical treatment (100%), in which patients express refusal of life-sustaining care (97.1%). The actual treatments or the moment when they should be limited or stopped were not always mentioned in detail. (2) A desire for effective pain relief to avoid suffering (57.1%) and (3) messages for their family (34.3%), such as funeral arrangements (17.1%) and messages of love or trust (14.3%).ConclusionsPatients who write advance directives are not necessarily at the end of their lives. Their content mainly conveys treatment wishes, although patients also use them to pass on personal messages to their close family. This emerging role of advance directives to communicate messages within the family should be valued, even if it is not their original purpose.
Highlights
In France, advance directives are favourably perceived by most of the population, the drafting rate is low
Our first aim was to continue the preliminary work conducted in the Haematology and Cellular Therapy Department of the University Hospital (CHU) at Limoges, published in 2014: a mixed-methods study comprising retrospective analysis of a random sample of 200 patient medical records crossed with a qualitative analysis of the content of the Advance directives (AD) [14]
The Limoges CHU and Libourne Hospital both have this general administrative procedure and a proactive institutional procedure carried out by trained health professionals: all admitted patients are informed in person about ADs and health care proxy (HCP) and those who are interested are provided with an AD
Summary
In France, advance directives are favourably perceived by most of the population, the drafting rate is low. The purpose of this study was to analyse the content of advance directives written by patients suffering from malignant haemopathies to better understand how patients put them into practice. These could be relevant as early as the initial diagnosis of haematological malignancies because of the uncertain course of the disease. A HCP was defined, in accordance with French regulations [1], as a person chosen by the patient for two purposes: first, to support him/her in making decisions throughout the healthcare pathway and second to report the patient’s point of view and wishes concerning their end-of-life care, if they are unable to do so. The purpose of this study was to analyse the content of ADs written by patients with malignant heamopathies to better understand how they put them into practice
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