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Advance directives from haematology departments: the patient's freedom of choice and communication with families. A qualitative analysis of 35 written documents.
- Source :
- BMC Palliative Care; 1/2/2018, Vol. 17, p1-N.PAG, 12p
- Publication Year :
- 2018
-
Abstract
- Background: In 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. Methods: This 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. Results: The 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%). Conclusions: Patients 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. [ABSTRACT FROM AUTHOR]
- Subjects :
- PALLIATIVE treatment
ADVANCE directives (Medical care) -- Law & legislation
SUFFERING
INTERMENT
COMMUNICATION
CONTENT analysis
HEMATOLOGY
LOVE
PATIENT-family relations
MEDICAL cooperation
PROXY
RESEARCH
TRUST
PAIN management
ADVANCE directives (Medical care)
QUALITATIVE research
PATIENT refusal of treatment
THEMATIC analysis
DATA analysis software
DESCRIPTIVE statistics
HEMATOLOGIC malignancies
PATIENT autonomy
ETHICS
PREVENTION
Subjects
Details
- Language :
- English
- ISSN :
- 1472684X
- Volume :
- 17
- Database :
- Complementary Index
- Journal :
- BMC Palliative Care
- Publication Type :
- Academic Journal
- Accession number :
- 127072899
- Full Text :
- https://doi.org/10.1186/s12904-017-0265-1