Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study

Rodi, Helena; Detering, Karen; Sellars, Marcus; Macleod, Ashley; J, Todd; Fullerton, Sonia; Waller, Amy; Nolte, Linda

doi:10.1007/s00520-020-05878-z

Cited by 15 publications

(28 citation statements)

References 39 publications

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“…The overall low awareness toward ACP reflects the gap between the understanding of ACP and the sizable young age population. These parallels other studies done in America (Kavalieratos et al, 2015), Canada (Teixeira et al, 2015), the U.K. (Musa et al, 2015), Australia (Rodi et al, 2021) and Singapore (Ng et al, 2017) that have shown similar findings of low awareness of ACP in their respective populations. For young adults, lacking knowledge of ACP terminology was a significant reported barrier to engage in ACP (Barrison et al, 2021).…”

Section: Discussionsupporting

confidence: 89%

Awareness, Attitudes, and Willingness of Young Adults in Mainland China Regarding Advance Care Planning: A Cross-Sectional Study

Liu

Rosa

Sun

et al. 2022

MJN

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Background: Advance care planning (ACP) can help healthy young adults enhance their sense of responsibility and can assist others to complete their own end-of-life wishes. Therefore, this study assessed the awareness and attitudes of young adults toward ACP to check their willingness to participate in ACP to popularized it. Purpose: The purpose of this study was to explore the awareness and attitudes of ACP among young adults in mainland China, and determine factors associated with their willingness to participate in ACP. Methods: A total of 1312 Chinese young adults were surveyed by using the Advance Care Planning Questionnaire (ACPQ) between December 2020 and May 2021 in Jiangsu Province, China. Results: The level of young adults’ awareness of ACP was low, but the attitude toward ACP was positive. Monthly income, encouraged by others to participate in ACP, and death-related experiences in the last five years can affect the willingness of ACP among young adults. Conclusion: This study indicated a low awareness but supportive attitude toward ACP amongst young adults in mainland China. Patient education, public advocacy, and future research on young adult-centered models of shared decision-making are needed to increase young adults’ understanding of ACP and to enable them decision-making empowerment.

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Section: Discussionsupporting

confidence: 89%

Awareness, Attitudes, and Willingness of Young Adults in Mainland China Regarding Advance Care Planning: A Cross-Sectional Study

Liu

Rosa

Sun

et al. 2022

MJN

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“…It may also reflect medical practitioner preference to use doctor completed rather than person‐completed documentation, or as a result of sudden deterioration or delirium after admission. 15 Research suggests health professionals prefer using clinician‐led documents, as these are often easier to translate into clinical plans than general instructions contained in ACDs that may or may not relate to the illness being treated. 27 Alternatively, the higher prevalence of medical orders in hospitals than ACDs may reflect system‐specific factors and/or processes that limit the amount of time health professionals can spend discussing ACP with patients or a lack of processes to assist with locating an ACD.…”

Section: Discussionmentioning

confidence: 99%

“… 6 , 10 , 11 , 12 , 13 , 14 However, a recent Australian study of people with cancer and support people found that ACP and assistance with the completion of ACDs were commonly not discussed as part of standard care, despite two‐thirds of consumers having discussed ACP with loved ones and approximately half wanting ACP discussions with their doctor. 15 Ideally, outcomes of ACP discussions will be documented in an advance care directive (ACD). 9 Definitions, terminology and legislative frameworks surrounding ACDs vary internationally.…”

Section: Introductionmentioning

confidence: 99%

Advance care directive prevalence among older Australians and associations with person‐level predictors and quality indicators

Buck

Nolte

Sellars

et al. 2021

Health Expectations

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Background Advance care planning (ACP) conversations may result in preferences for medical care being documented. Objective To explore the uptake and quality of advance care directives (ACDs) among older Australians accessing health and aged care services, by overall ACP documentation prevalence, person‐level predictors and ACD quality indicators. Design and Setting National multi‐centre health record audit in general practices (GP), hospitals and residential aged care facilities (RACF). Participants A total of 4187 people aged ≥65 years attending their GP (n = 676), admitted to hospital (n = 1122) or residing in a RACF (n = 2389). Main Outcome Measures ACP documentation prevalence by setting and type including person‐completed ACDs and non‐ACD documents (completed by a health professional or someone else); person‐level predictors and quality indicators of ACDs. Results Overall ACP documentation prevalence was 46.5% (29.2% weighted). ACD prevalence was 25.3% (14.2% weighted). Unweighted ACD prevalence was higher in RACFs (37.7%) than in hospitals (11.1%) and GPs (5.5%). 35.8% of ACP documentation was completed by a health professional (9.7% weighted), and 18.1% was completed by someone else (10.6% weighted). Having an ACD was positively associated with being female, older, having two or more medical conditions, receiving palliative care, being divorced/separated and being in a RACF. Only 73% of ACDs included full name, signature, document date and witnessing. Conclusions and Contribution Low ACP documentation prevalence and a lack of accessible, person‐completed and quality ACDs represent an important ACP implementation issue. Low prevalence is complicated by poor document quality and a higher prevalence of documents being completed by someone other than the person.

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“…Positive impacts of ACP have been demonstrated for decreasing the provision of unwanted life‐sustaining treatment, increasing referrals to hospice and palliative care services, and decreasing preventable hospitalization (Brinkman‐Stoppelenburg et al, 2014). Despite the potential benefits, uptake of ACP is modest (Detering et al, 2019; Street et al, 2015; White et al, 2014), including among people with cancer (Rodi, Sellars, et al, 2020; Spelten et al, 2019). A review of Australian studies on ACP in people with cancer found, across studies, only 6%–15% of participants had documented their values and preferences for medical treatment (Rodi, Sellars, et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

“…Despite the potential benefits, uptake of ACP is modest (Detering et al, 2019; Street et al, 2015; White et al, 2014), including among people with cancer (Rodi, Sellars, et al, 2020; Spelten et al, 2019). A review of Australian studies on ACP in people with cancer found, across studies, only 6%–15% of participants had documented their values and preferences for medical treatment (Rodi, Sellars, et al, 2020). In addition to this, an audit of Australian hospitals, general practices, and aged care facilities ( n = 100 in total) found that of 628 older patients with malignant cancer, 26.8% had at least one form of AD recorded, though only 7.6% had a statutory (i.e., recognized by specific legislation) AD outlining their preferences for care (Buck et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Oncology nurses' perceptions of advance directives for patients with cancer

Hobden

Bryant

Waller

et al. 2021

Nursing & Health Sciences

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This study examined oncology nurses' perceptions of the impact of advance directives on oncology patients' end‐of‐life care. Nurses (n = 104), who were members of an oncology nursing society or worked in a large metropolitan cancer center, completed a cross‐sectional survey assessing perceptions of advance directives. There was high agreement that advance directives (i) make decisions easier for family (87%) and providers (82%); (ii) are doctors' responsibility to implement (80%); (iii) reduce unwanted aggressive treatment in the last weeks of life (80%); (iv) protect patient autonomy (77%); and (v) increase the likelihood of dying in a preferred location (76%). There was moderate or low agreement that advance directives (i) are accessible when needed (60%); (ii) are oncology nurses' responsibility to implement (46%); (iii) are always followed (41%); (iv) reduce the likelihood of pain in the last weeks of life (31%); (v) contain difficult to follow statements (30%); and (vi) have no impact on comfort in the last weeks of life (15%). Most nurses perceive benefits for advance directives, however, there remains uncertainty around accessibility and implementation. Guidelines and education about advance directive processes in oncology could improve person‐centered end‐of‐life care.

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Exploring advance care planning awareness, experiences, and preferences of people with cancer and support people: an Australian online cross-sectional study

Cited by 15 publications

References 39 publications

Awareness, Attitudes, and Willingness of Young Adults in Mainland China Regarding Advance Care Planning: A Cross-Sectional Study

Awareness, Attitudes, and Willingness of Young Adults in Mainland China Regarding Advance Care Planning: A Cross-Sectional Study

Advance care directive prevalence among older Australians and associations with person‐level predictors and quality indicators

Oncology nurses' perceptions of advance directives for patients with cancer

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