Effect of Advance Care Planning on Surrogate Decision Makers' Preparedness for Decision Making: Results of a Mixed-Methods Randomized Controlled Trial

Thiede, Elizabeth; Levi, Benjamin H.; Lipnick, Daniella; Johnson, Rhonda L.; La, In Seo; Lehman, Erik; Smith, Theresa J.; Wiegand, Debra L.; Green, Michael; Scoy, Lauren Jodi Van

doi:10.1089/jpm.2020.0238

Cited by 10 publications

(10 citation statements)

References 35 publications

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“…It is worth noting that the interviews found that family members emotionally protected patients to avoid anxiety and protected themselves from criticism of traditional concepts and filial piety culture, which led to their reluctance to mention ACP-related content. In contrast, the expectation of understanding patients' preferences would make them want to participate in the ACP process 31 . Thus, family members may be conflicted between wanting and not wanting to participate in ACP.…”

Section: Discussionmentioning

confidence: 99%

“…The health care provider may be an important player in initiating ACP conversations. Especially in most East Asian countries, doctors usually have strong authority 31 . Where appropriate, health care professionals should share ACP knowledge with patients and their families at a time suitable for their stage of life and disease.…”

Section: Discussionmentioning

confidence: 99%

“…In contrast, the expectation of understanding patients' preferences would make them want to participate in the ACP process. 31 Thus, family members may be conflicted between wanting and not wanting to participate in ACP. The health care provider may be an important player in initiating ACP conversations.…”

Section: Discussionmentioning

confidence: 99%

“…Especially in most East Asian countries, doctors usually have strong authority. 31 Where appropriate, health care professionals should share ACP knowledge with patients and their families at a time suitable for their stage of life and disease. This helps facilitate end-of-life discussions between patients and their families to support their health care decisions and needs.…”

Section: Discussionmentioning

confidence: 99%

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Advance Care Planning Engagement Among Family Members of Community-Dwelling Elderly Patients With Chronic Diseases in China

Liu

Chen

Zhang

et al. 2022

J Hosp Palliat Nurs

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In China, traditional culture advocates family consensus, and the advance care planning (ACP) engagement of family members is crucial to the implementation of ACP. However, there is still a lack of research on family members' engagement in ACP in mainland China. This study investigated the ACP engagement of family members of community-dwelling elderly patients with chronic diseases and provided evidence for further ACP intervention research. We conducted a mixed-methods sequential explanatory study, 273 family members were surveyed, and semistructured interviews were conducted. Following that, 12 family members were selected after statistical analysis to supplement the quantitative results. The results showed that the ACP engagement of family members of elderly patients with chronic diseases in the community was low, but the self-efficacy was higher. The age of family members, severity, and duration of patients' diseases were the main influencing factors for family members' ACP engagement. Traditional cultural, clinical decision-making mode, lack of understanding of ACP, and factors within the family may impede family members' engagement. This study showed that family-centered ACP practice has significant advantages in China and that future research should focus on the Chinese culture and medical system and highlight the role of families.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 2 more Smart Citations

Advance Care Planning Engagement Among Family Members of Community-Dwelling Elderly Patients With Chronic Diseases in China

Liu

Chen

Zhang

et al. 2022

J Hosp Palliat Nurs

View full text Add to dashboard Cite

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“…The codebook had 4 broad categories related to spokespersons’ experiences with ACP: perceived preparedness, processes for decision-making, stress related to ACP, and spokespersons’ understanding of patients’ wishes. Due to the volume of transcripts and the size of the overall analysis, only the final category is reported here (other categories are reported elsewhere 19,20 ). Final codes were organized into themes.…”

Section: Methodsmentioning

confidence: 99%

What Surrogates Understand (and Don’t Understand) About Patients’ Wishes After Engaging Advance Care Planning: A Qualitative Analysis

Simmons

Levi

Green

et al. 2021

Am J Hosp Palliat Care

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Background: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. Aim: To explore how ACP did or did not contribute to a spokespersons’ understanding of patient wishes after engaging in ACP. Design: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. Setting/Participants: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. Results: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients’ wishes, and 3) complicated emotions impacting end-of-life discussions. Conclusions: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

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Decision aids for people facing health treatment or screening decisions

Stacey,

Lewis,

Smith

et al. 2024

Cochrane Database of Systematic Reviews

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Effect of Advance Care Planning on Surrogate Decision Makers' Preparedness for Decision Making: Results of a Mixed-Methods Randomized Controlled Trial

Cited by 10 publications

References 35 publications

Advance Care Planning Engagement Among Family Members of Community-Dwelling Elderly Patients With Chronic Diseases in China

Advance Care Planning Engagement Among Family Members of Community-Dwelling Elderly Patients With Chronic Diseases in China

What Surrogates Understand (and Don’t Understand) About Patients’ Wishes After Engaging Advance Care Planning: A Qualitative Analysis

Decision aids for people facing health treatment or screening decisions

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