title: Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies.
abstract: BACKGROUND
  During the last few decades, patients' rights have been reinforced in many countries by acts of law. Measures now include health care proxies to uphold the doctor-patient relationship and advance directives for end-of-life patients. These could be relevant tools as early as the initial diagnosis of haematological malignancies because of the uncertain disease course. The aim of this research was to assess the factors associated with the designation of a proxy and writing advance directives by patients in a haematology department in France.
  
  
  METHODS
  After a specific programme to encourage discussions about end-of-life preferences, we conducted a mixed-methods study comprising retrospective analysis of a random sample of 200 patients' medical records, crossed with a qualitative analysis of the content of advance directives. Statistical analysis was performed by the RKward V 0.6.1 software with 0.05 denoting significance. The study was performed and presented in accordance with the STROBE guidelines. A thematic analysis of the advance directives was performed by two researchers.
  
  
  RESULTS
  A total of 197 medical records were evaluable. The mean age of the patients was 66 years (range: 18-91). Nearly 2/3 of them (64.5%) designated a proxy, 6.1% wrote advance directives, and 8.1% and 4.6% expressed a wish to meet a religious representative or a volunteer, respectively. The 2-year survival rate was 78.4% [95%CI: 68.2-90.2]. Patients who wrote advance directives were statistically older (p <0.00025). Patients who wrote an advance directive were more likely to have expressed a wish to meet a religious representative (p <0.001) or a volunteer (p = 0.003). Marital status was a significant factor in appointing a proxy (p = 0.04).
  
  
  CONCLUSIONS
  To the best of our knowledge, this is the first paper to identify influencing factors for proxies and advance directives in a homogenous population of patients with haematological malignancies. Most patients chose a proxy. However, despite several training programmes for the carers and a care planning programme, few patients wrote advance directives. Our findings suggest that influencing factors are advanced age and a wish to see a religious representative. This study highlights the importance of oral communication about end-of-life issues between carers, patients and their relatives.
authors: Centre Hospitalier Universitaire, Service d'hématologie Clinique et de thérapie cellulaire, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Sophie
authors: S
authors: Trarieux-Signol
authors: Centre Hospitalier Universitaire, Service d'hématologie Clinique et de thérapie cellulaire, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Stéphane
authors: S
authors: Moreau
authors: Centre Hospitalier Universitaire, Service d'hématologie Clinique et de thérapie cellulaire, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Marie-Pierre
authors: MP
authors: Gourin
authors: Centre Hospitalier Universitaire, Service d'hématologie Clinique et de thérapie cellulaire, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Amélie
authors: A
authors: Penot
authors: Centre Hospitalier Universitaire, Centre d'Epidémiologie de Biostatistique et de Méthodologie de la Recherche, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Geoffroy
authors: G
authors: Edoux de Lafont
authors: Centre Hospitalier Universitaire, Centre d'Epidémiologie de Biostatistique et de Méthodologie de la Recherche, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Pierre-Marie
authors: PM
authors: Preux
authors: Centre Hospitalier Universitaire, Service d'hématologie Clinique et de thérapie cellulaire, 2 avenue Martin Luther King, 87042 Limoges, France.
authors: Dominique
authors: D
authors: Bordessoule
mesh_terms: D000328:Adult; D016223:Advance Directives / Q000331:legislation & jurisprudence*; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D005260:Female; D005602:France / Q000453:epidemiology; D019337:Hematologic Neoplasms / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010817:Physician-Patient Relations; D019727:Proxy / Q000331:legislation & jurisprudence*; D036301:Qualitative Research; D012189:Retrospective Studies; D013727:Terminal Care / Q000331:legislation & jurisprudence / Q000523:psychology
keywords: Advance directives; Ethics; Haematology; Health communication; Proxy; Spirituality