What Clinicians and Researchers Should Know About the Evolving Field of Advance Care Planning: a Narrative Review.

Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP's evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of "clinically meaningful" ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients' values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP's continued evolution to better serve patients and their care partners.

Surrogate Decision Makers Need Better Preparation for Their Role: Advice from Experienced Surrogates.

Background: Surrogate decision makers are required to make difficult end-of-life decisions with little preparation. Little is known about what surrogates may need to adequately prepare for their role, and few resources exist to prepare them. Objective: To explore experiences and advice from surrogates about how best to prepare for the surrogate role. Design: Semistructured focus groups. Setting/Participants: Sixty-nine participants were recruited through convenience sampling in San Francisco area hospitals, cancer support groups, and community centers for 13 focus groups. Surrogates were included if they were 18 years of age or older and reported having made medical decisions for others. Measurements: Qualitative thematic content analysis. Results: Forty participants reported making surrogate decisions for others: 6 were Spanish speaking, 22 were women, 16 were Black American, 11 Asian/Pacific Islander, 6 Latinx, and 7 White; 9 had limited health literacy. The majority (29, 73%) emphasized the importance of advance care planning (ACP) and expressed the desire for additional guidance. Five themes and advice were identified: (1) lack of, but needing, surrogates' own preparation and guidance (2) initiate ACP conversations, (3) learn patient's values and preferences, (4) communicate with clinicians and advocate for patients, and (5) make informed surrogate decisions. Conclusion: Experienced surrogate decision makers emphasized the importance of ACP and advised that surrogates need their own preparation to initiate ACP conversations, learn patients' values, advocate for patients, and make informed surrogate decisions. Future interventions should address these preparation topics to ease surrogate burden and decrease disparities in surrogate decision making.

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review.

BACKGROUND/OBJECTIVES: Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes. DESIGN: Scoping review. MEASUREMENTS: We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive. RESULTS: Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (≥18 to ≥80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed. CONCLUSION: ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.

Anxious, Depressed, and Planning for the Future: Advance Care Planning in Diverse Older Adults.

OBJECTIVES: To determine whether depression and anxiety are associated with advance care planning (ACP) engagement or values concerning future medical care. DESIGN: Cross-sectional. PARTICIPANTS: English- and Spanish-speaking patients, aged 55 years and older, from a San Francisco, CA, county hospital. MEASURES: Depression was measured by the Patient Health Questionnaire 8-item scale, and anxiety was measured by the Generalized Anxiety Disorder 7-item scale, using standardized cutoffs of 10 or more for moderate-to-severe symptoms. ACP engagement was measured using validated surveys of ACP behavior change (e.g., self-efficacy and readiness; mean five-point Likert score) and ACP actions (e.g., ask, discuss, and document wishes; 0- to 25-point scale), with higher scores representing higher engagement. In addition, we asked a question about valuing life extension ("some health situations would make life not worth living"). We used adjusted linear and logistic regression. RESULTS: Mean age of 986 participants was 63 years, 81% were non-White, 39% had limited health literacy, 45% were Spanish speaking, 13% had depression, and 10% had anxiety. After adjustment for demographic and health status variables, participants who were depressed versus not depressed had higher ACP behavior change scores (0.2 points; 95% confidence interval (CI) = 0.06-0.38; P = .007), higher ACP action scores (1.5 points; 95% CI = 0.51-2.57; P = .003), and higher odds of not valuing life extension (odds ratio (OR) = 2.5; 95% CI = 1.5-4.3; P < .001). Results were similar in participants with versus without anxiety (ACP behavior change: 0.2 points; 95% CI = 0.05-0.40; P = .01; ACP action scores: 1.2 points; 95% CI = 0.14-2.32; P = .028; odds of not valuing life extension: OR = 2.3; 95% CI = 1.3-3.9; P = .004). CONCLUSION: Depression and anxiety were associated with greater ACP engagement and not valuing life extension. Although the direction of association between ACP engagement and values with anxiety and depression cannot be determined in this cross-sectional study, these conditions may influence ACP preferences. Future studies should assess whether changes in anxiety or depression affect ACP preferences over time.

Leveraging In-Home Supportive Services Programs to Engage People in Advance Care Planning: Input from Staff, Providers, and Client Stakeholders.

Background: In-Home Supportive Services (IHSS) cares for millions of Medicaid-eligible older adults who are often homebound and socially isolated. Advance care planning (ACP) can be challenging for this population, and IHSS programs may play an important role. Objective: To explore the feasibility of an IHSS ACP program for frail older adults. Design: Semistructured focus groups. Setting/Subjects: Fifty IHSS stakeholders (20 administrators, 9 case managers, 13 in-home caregivers, and 8 clients) participated in 10 focus groups in San Francisco. Measurements: Qualitative thematic content analysis by two independent coders. Results: Four main themes emerged: (1) Unmet needs: patients' wishes unknown during a medical crisis, lack of education/training for clients and staff; (2) Barriers: conflict of interest and potential medical overreach of IHSS caregivers, lack of billing avenues, time limitations, and cultural, literacy, and language barriers; (3) Facilitators: leveraging established workflows, available technology, and training programs; and (4) Implementation: use a tailored, optional approach based on clients' readiness, focus on case managers not caregivers to prevent conflict of interest; use established intake, follow-up, and training procedures; consider cultural and literacy-appropriate messaging; and standardize easy-to-use procedures, simple scripts, and educational guides, within established workflow to support case managers. Conclusions: An IHSS ACP program is important and feasible for Medicaid-eligible, frail older adults. Implementation suggestions for success by IHSS stakeholders include focusing on case managers rather than in-home caregivers to prevent conflict of interest; tailoring programs to clients' readiness, literacy, and language; creating educational programs for IHSS staff, clients, and community; and standardizing easy-to-use guides and procedures into IHSS workflows.

Health Literacy Matters More Than Experience for Advance Care Planning Knowledge Among Older Adults.

BACKGROUND: Advance care planning (ACP) engagement is low among vulnerable populations, including those with limited health literacy (LHL). Limited knowledge about ACP may be a modifiable mediator of the relationship between LHL and ACP. Our goal was to determine whether health literacy is associated with ACP knowledge. DESIGN: Cross-sectional design. SETTING: A public health delivery system and Veterans Affairs Medical Center in San Francisco, CA. PARTICIPANTS: English- and Spanish-speaking patients (N = 1400). MEASUREMENTS: ACP knowledge was assessed with seven validated multiple-choice questions. Health literacy was measured using a validated scale. Sociodemographic measures included age, sex, language, education, race, health status, and social support. Prior ACP experience was defined as having documented legal forms and/or goals-of-care discussions in the medical record. We used Kruskal-Wallis tests and linear regression to examine associations of ACP knowledge with LHL, prior ACP experience, and sociodemographic factors. RESULTS: Mean age of participants was 65 (±10) years, 48% were women, 34% had LHL, 32% were Spanish speaking, 47% had high school education or less, and 70% were nonwhite. Mean 7-point knowledge scores were lower for those with limited vs adequate health literacy (3.8 [SD = 1.9 vs 5.5 (SD = 1.7); P < .001). In multivariable analysis, ACP knowledge scores were 1.0 point lower among those with LHL; 0.6 points lower among Spanish speakers and those with high school education or less; and 0.5 points lower among individuals of nonwhite race (P < .001 for all). Knowledge scores were 0.02 points lower per year of older age (P = .007) and 0.01 points higher per point of greater social support (P = .005). Prior ACP experience was not associated with knowledge after adjustment (P = .7). CONCLUSIONS: Health literacy and sociodemographics are stronger predictors than prior ACP experience of ACP knowledge. This study suggests that providing easy-to-understand ACP materials is paramount and should be offered even if patients have previous experience with the ACP process. J Am Geriatr Soc 67:2151-2156, 2019.

Patient Activation: A Key Component of Successful Advance Care Planning.

Background: Patient activation-or knowledge, confidence, and skill managing overall health-is associated with improved health behaviors such as exercise; it is unknown whether it is associated with advance care planning (ACP). Objective: To determine whether patient activation is associated with ACP. Design: This is a cross-sectional study. Setting/Subjects: A total of 414 veterans (≥60 years) with serious and chronic illness enrolled in an ACP trial. Measures: Patient characteristics and self-report surveys included the validated 13-item patient activation measure (PAM, five-point Likert) (e.g., "Taking an active role in your own healthcare is the most important factor…") categorized into four levels (e.g., Level 1: "disengaged and overwhelmed" to Level 4: "maintaining behaviors"). ACP was measured with the ACP Engagement Survey including 57-item process scores (i.e., knowledge, contemplation, self-efficacy, readiness, 5-point Likert scale) and 25-item action scores (i.e., surrogate designation, yes/no items). Associations were determined with linear regression. Results: Participants were 71.1 ± 7.8 years of age, 43% were non-white, 9% were women, and 20% had limited health literacy. Higher PAM levels were associated with higher finances, having adult children, lower comorbidity, and more social support (p < 0.05). After adjusting for these characteristics, higher PAM (Level 4 vs. Level 1) was associated with higher ACP engagement (ACP process scores, 2.8 ± 0.7 vs. 3.8 ± 0.7 and action scores 9.7 ± 4.4 vs. 15.1 ± 6.0, p < 0.001). Conclusions: Higher patient activation to manage one's overall healthcare is associated with higher engagement in ACP. Interventions designed to foster general patient activation and self-efficacy to engage in health behaviors and disease management may also improve engagement in the ACP process.

Older Adult and Surrogate Perspectives on Serious, Difficult, and Important Medical Decisions.

OBJECTIVES: To elicit decisions that diverse older adults and surrogates perceive as serious, difficult, or important and explore what helped them make those decisions. DESIGN: Focus groups (N=13) in which participants were asked to recall serious, difficult, or important medical decisions and what helped them make those decisions. SETTING: Clinics, support groups and senior centers. PARTICIPANTS: Diverse English- and Spanish-speaking older adults (age: mean 78, range 64-89) and surrogates (age: mean 57, range 33-76) (29% African American, 26% white, 26% Asian or Pacific Islander, 19% Hispanic) (N=69). MEASUREMENTS: We used thematic analysis to analyze transcripts. RESULTS: We identified 168 decisions. Older adults from all racial and ethnic groups frequently recalled cancer treatment decisions and decisions about chronic illness management. Surrogates described decisions about transitions in care and medical crises. Older adults valued self-sufficiency and maximizing survival and relied on personal experiences as often as medical advice. In all racial and ethnic groups, surrogates valued avoiding suffering for loved ones. CONCLUSION: Diverse older adults and surrogates perceive life-threatening illness and day-to-day decisions about chronic disease to be serious, difficult, and important. The surrogates' goal of avoiding suffering of older adults may differ from older adults' priorities of self-sufficiency and maximizing survival. Clinicians should support older adults and surrogates in identifying important and difficult decisions and learn about the values and information sources they bring to decision-making. With this knowledge, clinicians can customize decision support and achieve person-centered care.

Symptom Assessment Solutions for In-Home Supportive Services and Diverse Older Adults: A Roadmap for Change.

BACKGROUND: Millions of older adults require Medicaid-funded home care, referred to as In-Home Supportive Services (IHSS). Many of these individuals experience serious illness, disability, and common symptoms such as pain and shortness of breath. OBJECTIVE: To explore whether and how to integrate symptom assessment into an IHSS program to identify and manage symptoms in diverse older adults who receive in-home care. DESIGN: Qualitative study comprising 10 semistructured focus groups. SETTING AND SUBJECTS: Fifty San Francisco IHSS administrators, case managers, providers, and consumers. MEASUREMENTS: Two authors double-coded transcripts and conducted thematic analysis. RESULTS: Four main themes emerged from the data: (1) Large unmet needs: gaps in understanding, training, standard assessment, and untreated symptoms, including identifying loneliness as a symptom; (2) Potential barriers: misunderstanding of palliative care, consumer reluctance, and the added burden on IHSS workforce; (3) Facilitators: consumer and provider buy-in and perceived benefits of such a symptom assessment program, and the ability to build on current IHSS relationships and infrastructure; and (4) Implementation logistics: taking an individualized, optional approach; consider appropriate messaging about quality of life and not end of life; and creating standardized, easy-to-use procedures, tools, training, and workflow to support providers. CONCLUSIONS: An IHSS symptom assessment program is desired, needed, and feasible and can leverage the established IHSS infrastructure and relationships of consumers and IHSS providers to assess symptoms in the home. Acknowledging consumer choice, developing appropriate tools and trainings for IHSS staff, and effective messaging of program goals can contribute to success.

Effect of the PREPARE Website vs an Easy-to-Read Advance Directive on Advance Care Planning Documentation and Engagement Among Veterans: A Randomized Clinical Trial.

Importance: Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings. Objective: To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation. Design, Setting, and Participants: This was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year. Interventions: Participants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements. Main Outcomes and Measures: The primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician. Results: The mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P = .04). PREPARE also resulted in higher self-reported ACP engagement at each follow-up, including higher process and action scores; P <.001 at each follow-up). Conclusions and Relevance: Easy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources. Trial Registration: clinicaltrials.gov Identifier: NCT01550731.

Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel.

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.

Emergency Physicians' Experience with Advance Care Planning Documentation in the Electronic Medical Record: Useful, Needed, and Elusive.

OBJECTIVE: For patients' preferences to be honored, emergency department (ED) physicians must be able to find and use advance care planning (ACP) information in the electronic medical record (EMR). ED physicians' experiences with ACP EMR documentation and their documentation needs are unknown. METHODS: We surveyed 70 ED physicians (81% response rate) from a tertiary and county ED. Our primary outcome was confidence finding and using ACP EMR documentation (percentage reporting very/extremely on a five-point Likert scale). Secondary outcomes included frequency of use and perceived usefulness of types of ACP documentation. Suggestions for improvement were analyzed using thematic content analysis. RESULTS: Participants' mean age was 36 years (± 9) and 54% were women. Thirty-one percent reported being very/extremely confident they could find ACP EMR documentation, and 55% felt very/extremely confident they could use it to care for patients. Yet 74% needed it ≥1 time/week and 43% ≥5 times/week. Participants reported code status orders (90%), Physician Orders for Life Sustaining Treatment (POLST) (86%), and durable power of attorney for health care (78%) as very/extremely useful, followed by values statements (31%), oral directives (34%), and living wills (37%). ED physicians wanted highly visible ACP information, "on the main screen." CONCLUSIONS: EMR systems are not optimized to provide critical ACP information to ED physicians who lack confidence finding or using ACP EMR documentation to care for patients. Dedicated ACP information on the EMR home screen and tailored training may be needed to help ED providers find, use, and discuss ACP documentation to provide care aligned with patients' goals.

"Doctor, Make My Decisions": Decision Control Preferences, Advance Care Planning, and Satisfaction With Communication Among Diverse Older Adults.

CONTEXT: Culturally diverse older adults may prefer varying control over medical decisions. Decision control preferences (DCPs) may profoundly affect advance care planning (ACP) and communication. OBJECTIVES: To determine the DCPs of diverse, older adults and whether DCPs are associated with participant characteristics, ACP, and communication satisfaction. METHODS: A total of 146 participants were recruited from clinics and senior centers in San Francisco. We assessed DCPs using the control preferences scale: doctor makes all decisions (low), shares with doctor (medium), makes own decisions (high). We assessed associations between DCPs and demographics; prior advance directives; ability to make in-the-moment goals of care decisions; self-efficacy, readiness, and prior asked questions; and satisfaction with patient-doctor communication (on a five-point Likert scale), using Chi-square and Kruskal-Wallis analysis of variance. RESULTS: Mean age was 71 ± 10 years, 53% were non-white, 47% completed an advance directive, and 70% made goals of care decisions. Of the sample, 18% had low DCPs, 33% medium, and 49% high. Older age was the only characteristic associated with DCPs (low: 75 ± 11 years, medium: 69 ± 10 years, high: 70 ± 9 years, P = 0.003). DCPs were not associated with ACP, in-the-moment decisions, or communication satisfaction. Readiness was the only question-asking behavior associated (low: 3.8 ± 1.2, medium: 4.1 ± 1.2, high: 4.3 ± 1.2, P = 0.05). CONCLUSION: Nearly one-fifth of diverse, older adults want doctors to make their medical decisions. Older age and lower readiness to ask questions were the only demographic variables significantly associated with low DCPs. Yet, older adults with low DCPs still engaged in ACP, asked questions, and reported communication satisfaction. Clinicians can encourage ACP and questions for all patients, but should assess DCPs to provide the desired amount of decision support.

Family matters: effects of birth order, culture, and family dynamics on surrogate decision-making.

Cultural attitudes about medical decision-making and filial expectations may lead some surrogates to experience stress and family conflict. Thirteen focus groups with racially and ethnically diverse English and Spanish speakers from county and Veterans Affairs hospitals, senior centers, and cancer support groups were conducted to describe participants' experiences making serious or end-of-life decisions for others. Filial expectations and family dynamics related to birth order and surrogate decision-making were explored using qualitative, thematic content analysis, and overarching themes from focus group transcripts were identified. The mean age of the 69 participants was 69 ± 14, and 29% were African American, 26% were white, 26% were Asian or Pacific Islander, and 19% were Latino. Seventy percent of participants engaged in unprompted discussions about birth order and family dynamics. Six subthemes were identified within three overarching categories: communication (unspoken expectations and discussion of death as taboo), emotion (emotional stress and feelings of loneliness), and conflict (family conflict and potential solutions to prevent conflict). These findings suggest that birth order and family dynamics can have profound effects on surrogate stress and coping. Clinicians should be aware of potential unspoken filial expectations for firstborns and help facilitate communication between the patient, surrogate, and extended family to reduce stress and conflict.

A novel website to prepare diverse older adults for decision making and advance care planning: a pilot study.

CONTEXT: We have reconceptualized advance care planning (ACP) as a multistep process focused on preparing patients with skills needed for communication and in-the-moment decision making. OBJECTIVES: To operationalize this paradigm, we created an easy-to-use ACP website (prepareforyourcare.org) based on a theoretical framework of behavior change and pilot-tested its efficacy to engage older adults in ACP. METHODS: At baseline and 1 week after viewing the PREPARE website, we assessed behavior change in ACP by using a validated survey that includes Process Measures (knowledge, contemplation, self-efficacy, and readiness, 5-point Likert scales) and Action Measures (yes/no whether an ACP behavior was completed). We also assigned participants into behavior change stages (i.e., precontemplation, contemplation, preparation, action, maintenance) and determined the percentage of participants who moved from precontemplation at baseline to higher stages at 1 week. We also assessed PREPARE ease-of-use (10-point scale, 10 being the easiest). Changes were assessed with Wilcoxon signed rank sum tests and McNemar's tests. RESULTS: Mean age of the participants was 68.4 years (SD 6.6), and 65% were nonwhite. Behavior Change Process Measures average Likert scores increased from 3.1 (0.9) to 3.7 (0.7), P < 0.001. Action Measures did not change significantly. However, precontemplation significantly decreased for most actions (e.g., talking to doctor about desired medical care, 61% to 35%, P < 0.003), with a mean decrease of 21% (range, 16%-33%). PREPARE was rated a nine of ten (±1.9) for ease-of-use. CONCLUSION: A new, patient-centered ACP website that focuses on preparing patients for communication and decision making significantly improves engagement in the process of ACP and behavior change. A clinical trial of PREPARE is currently underway.

Development and validation of a questionnaire to detect behavior change in multiple advance care planning behaviors.

INTRODUCTION: Advance directives have traditionally been considered the gold standard for advance care planning. However, recent evidence suggests that advance care planning involves a series of multiple discrete behaviors for which people are in varying stages of behavior change. The goal of our study was to develop and validate a survey to measure the full advance care planning process. METHODS: The Advance Care Planning Engagement Survey assesses "Process Measures" of factors known from Behavior Change Theory to affect behavior (knowledge, contemplation, self-efficacy, and readiness, using 5-point Likert scales) and "Action Measures" (yes/no) of multiple behaviors related to surrogate decision makers, values and quality of life, flexibility for surrogate decision making, and informed decision making. We administered surveys at baseline and 1 week later to 50 diverse, older adults from San Francisco hospitals. Internal consistency reliability of Process Measures was assessed using Cronbach's alpha (only continuous variables) and test-retest reliability of Process and Action Measures was examined using intraclass correlations. For discriminant validity, we compared Process and Action Measure scores between this cohort and 20 healthy college students (mean age 23.2 years, SD 2.7). RESULTS: Mean age was 69.3 (SD 10.5) and 42% were non-White. The survey took a mean of 21.4 minutes (±6.2) to administer. The survey had good internal consistency (Process Measures Cronbach's alpha, 0.94) and test-retest reliability (Process Measures intraclass correlation, 0.70; Action Measures, 0.87). Both Process and Action Measure scores were higher in the older than younger group, p<.001. CONCLUSION: A new Advance Care Planning Engagement Survey that measures behavior change (knowledge, contemplation, self-efficacy, and readiness) and multiple advance care planning actions demonstrates good reliability and validity. Further research is needed to assess whether survey scores improve in response to advance care planning interventions and whether scores are associated with receipt of care consistent with one's wishes.

Advance care planning beyond advance directives: perspectives from patients and surrogates.

CONTEXT: Advance care planning (ACP) has focused on documenting life-sustaining treatment preferences in advance directives (ADs). The ADs alone may be insufficient to prepare diverse patients and surrogates for complex medical decisions. OBJECTIVES: To understand what steps best prepare patients and surrogates for decision making. METHODS: We conducted 13 English/Spanish focus groups with participants from a Veterans Affairs and county hospital and the community. Seven groups included patients (n=38), aged ≥65 years, who reported making serious medical decisions. Six separate groups included surrogates (n=31), aged ≥18 years, who made decisions for others. Semistructured focus groups asked what activities best prepared the participants for decision making. Two investigators independently coded data and performed thematic content analysis. Disputes were resolved by consensus. RESULTS: The mean±SD patient age was 78±8 years, and 61% were nonwhite. The mean±SD surrogate age was 57±10 years, and 91% were nonwhite. Qualitative analysis identified four overarching themes about how to best prepare for decision making: 1) identify values based on past experiences and quality of life, 2) choose surrogates wisely and verify that they understand their role, 3) decide whether to grant leeway in surrogate decision making, and 4) inform other family and friends of one's wishes to prevent conflict. CONCLUSION: Beyond ADs, patients and surrogates recommend several additional steps to prepare for medical decision making including using past experiences to identify values, verifying that the surrogate understands their role, deciding whether to grant surrogates leeway, and informing other family and friends of one's wishes. Future ACP interventions should consider incorporating these additional ACP activities.