Awareness and Attitudes towards Advance Care Directives (ACDs): An Online Survey of Portuguese Adults

Laranjeira, Carlos; Dixe, Maria dos Anjos; Gueifão, Luís; Caetano, Lina; Passadouro, Rui; Querido, Ana

doi:10.3390/healthcare9060648

Cited by 11 publications

(20 citation statements)

References 39 publications

(61 reference statements)

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“…It is likely that general public’s’ attitudes towards ADs and ACP may have changed after the outbreak of COVID-19. The COVID-19 pandemic may have highlighted the importance of ADs and ACP due to limited medical resources, [ 40 ] and the public become more aware of the fact that health can deteriorate suddenly and unexpectedly [ 41 ]. Our study showed that only few adults had heard of ADs, but most of them had positive attitudes toward ADs after learning about it.…”

Section: Discussionmentioning

confidence: 99%

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Advance directives and end-of-life care preferences among adults in Wuhan, China: a cross-sectional study

Lin

et al. 2021

BMC Public Health

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Background Little is known about advance directives (ADs) and end-of-life (EOL) care preferences among the general population in Mainland China. This study aimed to describe knowledge and attitudes of ADs and EOL care preferences, and to explore factors related to preferences for ADs among Chinese adults. Methods The sample included 1114 adult participants in Wuhan, Mainland China. A brief message including the link to the online survey was sent to local residents who were registered at household registration management centers in Wuhan. The questionnaire included information regarding demographics, self-rated health, views on ADs and EOL care. Bivariate analyses and binary forward logistic regression were conducted to examine factors related to ADs preferences of Chinese adults. Results The average age of the sample was 48.0 years and more than half of the sample was female. 81.8% had never heard of ADs, but 86.6% indicated that they might create one after learning what ADs were. 58% would choose hospice care if they were terminally ill whereas 48.7% of the participants wanted to die at home. 92.3% would want to know their diagnosis and prognosis if ill; however, if their family members were diagnosed with an incurable disease, 50.5% would not tell their ill family member the actual diagnosis and prognosis. Those who had heard of ADs (OR = 1.567, p < 0.001), earned an associate’s degree (OR = 2.448, p < 0.001) or a bachelor’s degree or higher (OR = 2.382, p < 0.001), and self-rated their health as very poor/poor (OR = 1.002, p = 0.001) were more likely to be willing to make an AD than their counterparts. However, those who were single (OR = 0.149, p < 0.001) or widowed /divorced/separated (OR = 0.405, p = 0.001) were less likely to be willing to make an AD than the married ones. Conclusions Chinese adults showed positive attitudes towards ADs. There is an urgent need to promote more educational initiatives and raise awareness on the importance of ADs. It is important to develop more policies and legislation about ADs to improve the quality of EOL care in Mainland China.

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Section: Discussionmentioning

confidence: 99%

“…Policy about ADs/ACP should be made to respect adults’ rights in Mainland China. Online educational materials and social media may be helpful in encouraging EOL discussions and promote ADs awareness under the conditions of the COVID-19 pandemic [ 40 ].…”

Section: Discussionmentioning

confidence: 99%

Advance directives and end-of-life care preferences among adults in Wuhan, China: a cross-sectional study

Lin

et al. 2021

BMC Public Health

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“…A low level of knowledge on these directives was observed since only 13.3% of the participants knew about PAD and only 5.0% had previously lled in a PAD. These results are somewhat con icting with the publication from Laranjeira et al, 17 who conducted an online survey on advanced care directives for improving the quality of care on patients at the end of life, including 1024 Portuguese adults, where a signi cant proportion (76.4%) reported having heard of ACP, but only 2.3% had ever lled in these type of directives. These differences might be due to the fact that the participants in that were younger (40.3 ± 11.4 years old) and had a higher proportion of university (or similar) enrolment (79.9%) compared to our sample.…”

Section: Discussionmentioning

confidence: 71%

Advanced Directives’ Knowledge in Palliative Care: Do the Sociodemographic Features Influence it? A Survey in a Portuguese Population.

Martins

Nunes

2022

Preprint

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BackgroundAdvance care planning (ACP) allows the definition of goals and preferences for future health care, improving communication between patients and caregivers. Portuguese Advance Directives (PAD) ensure a living will and/or the assignment of a health care proxy (HCP). Knowledge on PAD and HCP is low, and the influence of demographic factors is still not clear. We intend to identify sociodemographic features associated with knowledge on PAD and HCP, and the registration of PAD.MethodsPatients in palliative care and their caregivers were included, and sociodemographic data was acquired. Participants were asked about their previous knowledge of PAD, the role of an HCP, and about previously writing a PAD.ResultsA total of 60 patients and their caregivers were included, with differences 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). 13.3% were aware of PAD, 15.0% were aware of HCP, and 5.0% previously filled a PAD. Non-Catholic participants were significantly more aware of these three topics.ConclusionsOur results are partially different from other Portuguese reports, probably due to differences in the populations, but consistent with results from other countries. Reports on the influence of religion in ACP are conflicting, with similarities in religious values between patients and HCP influencing end-of-life decisions. Improving education is necessary, namely in palliative care. There is low awareness of PAD and HCP in palliative care, and there is higher knowledge on these topics among non-Catholic individuals.Trial registration: ClinicalTrials.gov ID NCT05090072. Retrospectively registered on 22/10/2021.https://clinicaltrials.gov/ct2/show/NCT05090072?term=NCT05090072&cond=Advance+Directives&draw=2&rank=1

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“…Similar to previous studies examining perspectives regarding advances care planning in general (36,37) and advance directives in particular (38), all participants lacked a clear understanding of the concepts. They tended to conflate advance directives with people's last will or testament, and those in the veteran Jewish and Arab groups even equated them with euthanasia.…”

Section: Understanding Dementia-related Advance Directivesmentioning

confidence: 92%

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

2022

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BackgroundCompleting advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for end-of-life care of people living with dementia. However, research deciphering the reasoning behind the decision to complete or not advance directives in the case of dementia remains limited, especially among people pertaining to different majority/minority groups.ObjectivesTo explore the motivations of people without dementia in Israel to complete or not to complete advance directives and to compare these motivations among the majority veteran Jewish group, the minority Jewish Former Soviet Union immigrant group, and the minority Arab group.MethodsThis qualitative study used purposive sampling and focus groups with discussions elicited by a vignette. A total of 42 Israeli people without dementia participated in 6 focus groups: two with veteran Jews (n = 14), two with Jewish immigrants from the Former Soviet Union (n = 14), and two with Arabs (n = 14). The analysis followed recommended steps for thematic content analysis.ResultsFour overarching themes were identified: (1) the meaning of dementia-related advance directives, (2) motivations for willingness to complete advance directives, (3) motivations for not being willing to complete advance directives, and (4) ethical dilemmas. Some of the themes were common to all groups, while others were informed by the groups' unique characteristics. Participants displayed a lack of knowledge and misunderstanding about advance directives, and central concepts such as autonomy and competence. Furthermore, stigmatic images of dementia and of the person with the diagnosis were associated to participants' motivations to complete advance directives.ConclusionsThere is need to expand comparative research among culturally and socially similar and dissimilar groups within a country as well as between countries in order to better guide public health efforts to increase the rates of advance directives completion. Special attention should be paid to decreasing stigmatic beliefs and understanding unique cultural values and motivations.

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Awareness and Attitudes towards Advance Care Directives (ACDs): An Online Survey of Portuguese Adults

Cited by 11 publications

References 39 publications

Advance directives and end-of-life care preferences among adults in Wuhan, China: a cross-sectional study

Advance directives and end-of-life care preferences among adults in Wuhan, China: a cross-sectional study

Advanced Directives’ Knowledge in Palliative Care: Do the Sociodemographic Features Influence it? A Survey in a Portuguese Population.

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

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