Advanced directives' knowledge among Portuguese palliative patients and caregivers: do the sociodemographic factors influence it? A cross-sectional survey

葡萄牙临终关怀患者及其照护者对预立医疗指示的了解程度:社会人口因素是否会影响其了解程度?一项横断面调查

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Abstract

BACKGROUND: The influence of demographic factors on the completion and knowledge of the Portuguese Advance Directives (PAD) and the Health Care Proxy's (HCP) role is still not clear. OBJECTIVES: To identify sociodemographic features associated with knowledge and adherence to PAD and HCP in palliative care. DESIGN: Cross-Sectional analysis of the sociodemographic data, PAD and HCP role knowledge, and PAD Register from a group of Portuguese palliative patients and their caregivers enrolled on the DAVPAL trial to test the PAD efficacy in promoting better concordance between patients and caregivers. PARTICIPANTS: One hundred twenty participants (60 palliative patients and 60 caregivers). METHODS: After enrollment, the participants' sociodemographic data was acquired, their knowledge of PAD and the role of an HCP was questioned, and their prior register of the PAD was asked. RESULTS: 60 patients and 60 caregivers were included (n=120), with differences among them regarding age (p<.001), gender (p=.003), education (p<.001), job (p<.001), marital status (p=.043), and access to the internet (p=.003), but not regarding religion (p=.21). Only 13.3% of the participants were aware of PAD, 15.0% were aware of the HCP role, and 5.0% had previously filled a PAD. Religious beliefs (Non-Catholic) were the only sociodemographic factor significantly related to these three topics. CONCLUSIONS: There is low awareness of PAD and the HCP's role in palliative care, and there is higher knowledge on these topics among non-Catholic individuals. End-of-life decisions seem to be influenced by similarities in religious beliefs between patients and HCP. Improving education is necessary, namely in palliative care. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT05090072 . Retrospectively registered on 22/10/2021.

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