Background

Advance care planning (ACP) enables people to define, discuss, and record preferences for treatment and care. Measures of ACP behavior are lacking in the Netherlands. We aimed to translate, culturally adapt and validate the 34-item ACP Engagement Survey into Dutch.

Methods

Following validation guidelines, we tested content validity, internal consistency, reproducibility, construct validity, interpretability and criterion validity among persons with and without chronic disease.

Results

Forward-backward translation indicated the need of only minor adaptations. Two hundred thirty-two persons completed baseline and retest surveys; 121 were aged ≥60 years. Persons with chronic disease (n = 151) considered the survey more valuable than those without (66 vs. 59, p < 0.001, scale of 20-100), indicating good content validity. Internal consistency (Cronbach's alpha: 0.97) and reproducibility (intraclass correlation: 0.88) were good. Total ACP Engagement was higher among persons with chronic disease than those without (2.9 vs. 2.4, p < 0.01, scale of 1 to 5), indicating good psychometric support for construct validity and interpretability. Positive correlations of the ACP Engagement Survey and the General Self-Efficacy survey indicated good criterion validity (p < 0.05).

Conclusions

This study provided good psychometric support for the validity and reliability of the Dutch 34-item ACP Engagement Survey. This instrument can be used to assess involvement in ACP in adults with and without chronic disease.

COVID-19 may cause sudden serious illness, and relatives having to act on patients behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In LexisNexis Uni, we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

INTRODUCTION: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention. METHODS: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board. RESULTS: ACP in dementia was defined as a communication process adapted to the persons capacity, which includes, and is continued with, family if available. We identified pragmatic boundaries regarding participation and time (i.e., current or end-of-life care). Three interrelated issues that deserve particular attention were capacity, family, and engagement and communication. DISCUSSION: A communication and relationship-centered definitional framework of ACP in dementia evolved through international consensus supporting inclusiveness of persons with dementia and their family. HIGHLIGHTS: This article offers a consensus definitional framework of advance care planning in dementia. The definition covers all stages of capacity and includes family caregivers. Particularly important are (1) capacity, (2) family, (3) engagement, and communication. Fluctuating capacity was visualized in relation to roles and engaging stakeholders.

Advance care planning (ACP) is increasingly implemented in oncology and beyond, but a definition of ACP and recommendations concerning its use are lacking. We used a formal Delphi consensus process to help develop a definition of ACP and provide recommendations for its application. Of the 109 experts (82 from Europe, 16 from North America, and 11 from Australia) who rated the ACP definitions and its 41 recommendations, agreement for each definition or recommendation was between 68-100%. ACP was defined as the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and health-care providers, and to record and review these preferences if appropriate. Recommendations included the adaptation of ACP based on the readiness of the individual; targeting ACP content as the individual's health condition worsens; and, using trained non-physician facilitators to support the ACP process. We present a list of outcome measures to enable the pooling and comparison of results of ACP studies. We believe that our recommendations can provide guidance for clinical practice, ACP policy, and research.

Context

Despite increasing interest in advance care planning (ACP) and previous ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives.

Objective

The aim of this study was to develop a consensus definition of ACP for adults.

Methods

We convened a Delphi panel of multidisciplinary, international ACP experts consisting of 52 clinicians, researchers, and policy leaders from four countries and a patient/surrogate advisory committee. We conducted 10 rounds using a modified Delphi method and qualitatively analyzed panelists' input. Panelists identified several themes lacking consensus and iteratively discussed and developed a final consensus definition.

Results

Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients' values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: "Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness." The panel also described strategies to best support adults in ACP.

Conclusions

A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.

Context

Standardized outcomes that define successful advance care planning (ACP) are lacking.

Objective

The objective of this study was to create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes.

Methods

This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from five international ACP conferences to identify initial ACP outcome constructs. In five Delphi rounds, we asked panelists to rate patient-centered outcomes on a seven-point "not-at-all" to "extremely important" scale. We calculated means and analyzed panelists' input to finalize an Organizing Framework and outcome rankings.

Results

Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and health care (e.g., utilization). The top five outcomes included 1) care consistent with goals, mean 6.71 (±SD 0.04); 2) surrogate designation, 6.55 (0.45); 3) surrogate documentation, 6.50 (0.11); 4) discussions with surrogates, 6.40 (0.19); and 5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether "care consistent with goals" can be reliably measured.

Conclusion

A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly "care consistent with goals."