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01.12.2014 | Research article | Ausgabe 1/2014 Open Access

BMC Palliative Care 1/2014

Factors associated with the designation of a health care proxy and writing advance directives for patients suffering from haematological malignancies

Zeitschrift:
BMC Palliative Care > Ausgabe 1/2014
Autoren:
Sophie Trarieux-Signol, Stéphane Moreau, Marie-Pierre Gourin, Amélie Penot, Geoffroy Edoux de Lafont, Pierre-Marie Preux, Dominique Bordessoule
Wichtige Hinweise

Electronic supplementary material

The online version of this article (doi:10.​1186/​1472-684X-13-57) contains supplementary material, which is available to authorized users.

Competing interests

The authors declare that they have no competing interests.

Authors’ contributions

STS conceived the study, participated in the design, coordination and data interpretation, wrote the paper and finalized the manuscript. SM and MPG participated in the conceptualization of the project. AP and GEDL conducted the statistical analysis and helped with the interpretation of results. PMP participated in its design and supervised the statistical analysis. DB participated in its design, coordination and data interpretation and helped to finalize the manuscript. All the authors contributed to and approved the final version of the paper.

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.
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