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.

eConsultation for Deprescribing Among Older Adults: Clinician Perspectives on Implementation Barriers and Facilitators.

BACKGROUND: Electronic consultations (eConsults) enable asynchronous consultation between primary care providers (PCPs) and specialists. eConsults have been used successfully to manage a variety of conditions and have the potential to help PCPs manage polypharmacy and promote deprescribing. OBJECTIVE: To elicit clinician perspectives on barriers/facilitators of using eConsults for deprescribing among older adults within a university health network. DESIGN: Semi-structured interviews. PARTICIPANTS: PCPs, geriatricians, and pharmacists. APPROACH: We used the COM-B (Capability, Opportunity, Motivation, and Behavior) model to structure the interview guide and qualitative analysis methods to identify barriers/facilitators of (1) deprescribing and (2) use of eConsults for deprescribing. KEY RESULTS: Of 28 participants, 19 were PCPs (13 physicians, 4 residents, 2 nurse practitioners), 7 were geriatricians, and 2 were pharmacists. Barriers and facilitators to deprescribing: PCPs considered deprescribing important but identified myriad barriers (e.g., time constraints, fragmented clinical care, lack of pharmacist integration, and patient/family resistance). Use of eConsults for deprescribing: Both PCPs and geriatricians highlighted the limits of contextual information available through electronic health record (vs. face-to-face) to render specific and actionable eConsults (e.g., knowledge of prior deprescribing attempts). Participants from all groups expressed interest in a targeted process whereby eConsults could be offered for select patients based on key factors (e.g., polypharmacy or certain comorbidities) and accepted or declined by PCPs, with pithy recommendations delivered in a timely manner relative to patient appointments. This was encapsulated by one PCP: "they need to be crisp and to the point to be helpful, with specific suggestions of something that could be discontinued or switched…not, 'hey, did you know your patient is on over 12 medicines?'". CONCLUSIONS: Clinicians identified multifaceted factors influencing the utility of eConsults for deprescribing among older adults in primary care. Deprescribing eConsult interventions should be timely, actionable, and mindful of limitations of electronic chart review.

How older men live with stress urinary incontinence: Patient experience and navigation to treatment.

OBJECTIVES: To explore the context in which older men navigate treatment for stress urinary incontinence (SUI) following prostate surgery by characterizing lived experience of men with symptomatic SUI. SUBJECTS/PATIENTS AND METHODS: Mixed method study using surveys and semistructured interviews to examine a cohort of men who underwent evaluation for treatment of postprostatectomy SUI. RESULTS: Thirty-six men were interviewed after consultation for SUI and 31 had complete quantitative clinical data. Twenty-six underwent surgery and 10 chose no surgical intervention. In qualitative interviews, respondents experienced substantial decline in quality of life due to incontinence citing concerns associated with use of pads and worrying about incontinence. Most patients reported "workarounds"-efforts to mitigate or manage incontinence including Kegels, physical therapy, and garments. Participants also reported lifestyle changes including less strenuous physical activity, less sexual activity, and/or fewer social gatherings. Patients then described a "breaking point" where incontinence workarounds were no longer sufficient. After seeking evaluation, men described challenges in exploring treatment for SUI, including access to care and provider knowledge of treatment options. CONCLUSION: In a novel study of patients living with SUI a predictable lived experience was observed that culminated in a desire for change or "breaking point." In all men, this led to treatment-seeking behaviors and for many it led to SUI intervention. Despite effective treatments, patients continue to meet barriers gaining access to SUI evaluation and treatment.

Consensus definition of advance care planning in dementia: A 33-country Delphi study.

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 person's 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.

Newspaper coverage of advance care planning during the COVID-19 pandemic: Content analysis.

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.

"We've Got to Bring Information to Where People Are Comfortable": Community-Based Advance Care Planning with the Black Community.

BACKGROUND: People identifying as Black/African American are less likely to engage in advance care planning (ACP) compared to their White peers, despite the association of ACP with improved patient and caregiver outcomes. OBJECTIVES: Assess facilitators/barriers to ACP in the San Francisco (SF) Black community and co-design/implement/test community-based ACP pilot events. DESIGN: Community-based participatory research, including qualitative research, intervention development, and implementation. PARTICIPANTS: In partnership with the SF Palliative Care Workgroup (which includes health system, city, and community-based organizations), we formed an African American Advisory Committee (n = 13). We conducted 6 focus groups with Black older adults (age ≥ 55), caregivers, and community leaders (n = 29). The Advisory Committee then selected 5 community-based organizations through a widespread request for proposal. These community-based organizations designed and implemented community-based pilot events to support ACP engagement. MAIN MEASURES: Two authors analyzed recorded focus group transcripts using thematic analysis. We assessed pre- vs post-event readiness to engage in ACP (validated ACP Engagement Survey; 1-4 scale, 4 = most ready) using Wilcoxon signed rank tests and assessed event acceptability with open-ended questions. KEY RESULTS: Themes included the importance of ACP to the Black community (sub-themes: strengthens families; preserves dignity, particularly for sexual/gender minorities; is tied to financial planning) and facilitators for increasing ACP engagement (sub-themes: culturally relevant materials; events in trusted community spaces including Black-owned businesses). A total of 114 participants attended 5 events; 74% identified as Black, and 16% as sexual/gender minorities. Readiness to engage in ACP was similar pre- vs post-events; 98% would recommend the events to others. CONCLUSIONS: Community-based ACP events designed and led by and for the Black community are highly acceptable. Novel insights underscored the importance of financial planning as part of ACP and the role of Black-owned businesses as trusted spaces for ACP-related discussions.

Telephone Outreach Enhances Recruitment of Underrepresented Seriously Ill Patients for an Advance Care Planning Pragmatic Trial.

BACKGROUND: Patients experiencing systemic patterns of disadvantage, such as racial/ethnic minorities and those with limited English proficiency, are underrepresented in research. This is particularly true for large pragmatic trials of potentially sensitive research topics, such as advance care planning (ACP). It is unclear how phone outreach may affect research participation by underrepresented individuals. OBJECTIVE: To assess the effect of phone outreach, in addition to standard mail survey recruitment, in a population-based ACP pragmatic trial at three academic health systems in California. DESIGN: Retrospective cohort study PATIENTS: Primary care patients with serious illness were mailed a survey in their preferred language. Patients who did not initially respond by mail received up to three reminder phone calls with the option of survey completion by phone. MAIN MEASURES: Effect of phone outreach on survey response rate associated with respondent demographic characteristics (e.g., Social Vulnerability Index [SVI], range 0 (low) to 1 (high)). RESULTS: Across the health systems, 5998 seriously ill patients were mailed surveys. We obtained completed surveys from 1215 patients (20% response rate); 787 (65%) responded after mail alone and 428 (35%) participated only after phone outreach. Patients recruited after phone outreach compared to mail alone were more socially vulnerable (SVI 0.41 v 0.35, P < 0.001), were more likely to report being a racial/ethnic minority (35% v 28%, P = 0.006), and non-English speaking (16% v 10%, P = 0.005). Age and gender did not differ significantly. The inclusion of phone outreach resulted in a sample that better represented the baseline population than mail alone in racial/ethnic minority (28% mail alone, 30% including phone outreach, 36% baseline population), non-English language preference (10%, 12%, 15%, respectively), and SVI (0.35, 0.37, 0.38, respectively). CONCLUSIONS: Phone outreach for a population-based survey in a pragmatic trial concerning a potentially sensitive topic significantly enhanced recruitment of underrepresented seriously ill patients.

Predictors of Regret among Older Men after Stress Urinary Incontinence Treatment Decisions.

PURPOSE: When seeking treatment for male stress urinary incontinence (mSUI), patients are faced with weighing complex risks and benefits in making treatment decisions within their individual context. We sought to quantify the frequency of decisional regret among this population and to determine factors associated with regret. MATERIALS AND METHODS: A cohort of 130 males aged ≥65 years seen for initial mSUI consultation at the University of California, San Francisco Medical Center and the San Francisco Veterans Affairs Medical Center between June 2015 and March 2020 was developed. Using retrospective chart review and telephone interviews, we ascertained decisional regret as well as other patient-, disease- and treatment-related characteristics. Decisional regret was analyzed by treatment type and patient-, disease- and treatment-related factors. Multivariable logistic regression models were built to examine the factors most associated with decisional regret. RESULTS: Among the entire cohort, 22% reported moderate to severe decisional regret. Regret was highest among those electing conservative management, with 34.7% having decisional regret (vs with surgery: 8.3% sling, 8.2% sphincter; p <0.001). In multivariable analysis, depression, lower rating of shared decision making and higher current incontinence scores were significantly associated with decisional regret. CONCLUSIONS: Recognition of depression, improved efforts at shared decision making and more individualized treatment counseling have the potential to improve patient satisfaction with treatment choice. In addition, given high levels of regret among those electing conservative treatment, we may be underutilizing mSUI surgery in this population.

The PREPARE for Your Care program increases advance care planning engagement among diverse older adults with cancer.

BACKGROUND: Advance care planning (ACP) is low among older adults with cancer. In a secondary analysis of randomized trial data, the authors compared the efficacy of the PREPARE for Your Care (PREPARE) website plus an easy-to-read advance directive (AD) with an AD only among older adults with and without cancer. METHODS: Safety net, primary care patients in San Francisco were included if they were 55 years old or older, were English- or Spanish-speaking, and had 2 or more chronic conditions. The authors determined cancer diagnoses by using International Classification of Diseases, Ninth Revision/Tenth Revision codes. The primary outcome was new ACP documentation in the medical record at 15 months; the secondary outcomes were self-reported ACP engagement, ease of use, satisfaction, and depression/anxiety. The authors used mixed effects logistic and linear regression adjusted for prior ACP, health literacy, and clinician, including a cancer interaction term. RESULTS: Of 986 participants, 220 (22%) had cancer. The mean age was 63 years (SD, 6 years), 61% were women, 81% were of a minority race/ethnicity, 45% were Spanish-speaking, 39% had limited health literacy, and 27% had prior ACP. New ACP documentation was higher in the PREPARE arm versus the AD-only arm among participants with cancer (62% vs 43%; P = .01) and without cancer (38% vs 28%; P = .01), as was ACP engagement in both arms (P < .001), with no interactions by cancer. Ease of use and satisfaction were high, and depression/anxiety was low, with no differences by study arm or by cancer/no cancer. CONCLUSIONS: PREPARE plus an easy-to-read AD increased ACP documentation and engagement among diverse older adults with cancer more than an AD alone, with no increase in depression or anxiety between study arms or by cancer. PREPARE may help to decrease ACP disparities among patients with cancer. LAY SUMMARY: Advance care planning (ACP) is the process of sharing values, goals, and preferences for medical care, but engagement in ACP is low among older adults with cancer. Among 986 English- and Spanish-speaking older adults from a safety net hospital, an interactive, multimedia, web-based ACP program (PREPARE for Your Care at https://prepareforyourcare.org/) plus an easy-to-read advance directive increased ACP documentation and engagement more than an advance directive alone. There were no differences in this increase in ACP between older adults with cancer and older adults without cancer. Also, engaging in ACP did not result in increased depression or anxiety.

Do Life-sustaining Treatment Orders Match Patient and Surrogate Preferences? The Role of POLST.

BACKGROUND: It is essential to high-quality medical care that life-sustaining treatment orders match the current, values-based preferences of patients or their surrogate decision-makers. It is unknown whether concordance between orders and current preferences is higher when a POLST form is used compared to standard documentation practices. OBJECTIVE: To assess concordance between existing orders and current preferences for nursing facility residents with and without POLST forms. DESIGN: Chart review and interviews. SETTING: Forty Indiana nursing facilities (29 where POLST is used and 11 where POLST is not in use). PARTICIPANTS: One hundred sixty-one residents able to provide consent and 197 surrogate decision-makers of incapacitated residents with and without POLST forms. MAIN MEASUREMENTS: Concordance was measured by comparing life-sustaining treatment orders in the medical record (e.g., orders about resuscitation, intubation, and hospitalization) with current preferences. Concordance was analyzed using population-averaged binary logistic regression. Inverse probability weighting techniques were used to account for non-response. We hypothesized that concordance would be higher in residents with POLST (n = 275) in comparison to residents without POLST (n = 83). KEY RESULTS: Concordance was higher for residents with POLST than without POLST (59.3% versus 34.9%). In a model adjusted for resident, surrogate, and facility characteristics, the odds were 3.05 times higher that residents with POLST had orders for life-sustaining treatment match current preferences in comparison to residents without POLST (OR 3.05 95% CI 1.67-5.58, p < 0.001). No other variables were significantly associated with concordance. CONCLUSIONS: Nursing facility residents with POLST are significantly more likely than residents without POLST to have concordance between orders in their medical records and current preferences for life-sustaining treatments, increasing the likelihood that their treatment preferences will be known and honored. However, findings indicate further systems change and clinical training are needed to improve POLST concordance.

Association of Cognitive Function Screening Results with Adherence and Performance in a Pedometer-Based Intervention.

INTRODUCTION: A randomized, controlled trial of a pedometer-based walking intervention with weekly activity goals led to increased walking among dialysis patients. We examined whether impairment per cognitive function screening is associated with adherence and performance in the intervention. METHODS: Thirty dialysis patients were randomly assigned to a 3-month pedometer-based intervention with weekly goals. Participants were administered the Telephone Interview of Cognitive Status (TICS), a test of global mental status. We examined the association of levels of impairment on the TICS (≥33: unimpaired, 26-32: ambiguous impairment, 21-25: mild cognitive impairment [MCI]) with adherence, achieving weekly goals, and increasing steps, physical performance (Short Physical Performance Battery, SPPB), and self-reported physical function (PF) through multivariable linear mixed-model and logistic regression analyses adjusted for age, sex, BMI, dialysis modality, baseline steps, baseline SPPB, and stroke status. RESULTS: One-third of participants were unimpaired, and 13% had MCI. Participants with worse results on cognitive function screening missed more calls and completed fewer weekly goals than participants with better results. During the intervention, a worse result on cognitive function screening was associated with smaller increases in steps compared to those without impairment: (ambiguous: -620 [95% CI -174, -1,415], MCI: -1,653 [95% CI -120, -3,187]); less improvement in SPPB (ambiguous: -0.22 points [95% CI -0.08, -0.44], MCI: -0.45 [95% CI -0.13, -0.77]); and less improvement in PF (ambiguous: -4.0 points [95% CI -12.2, 4.1], MCI: -14.0 [95% CI -24.9, -3.1]). During the postintervention period, a worse result on cognitive function screening was associated with smaller increases in SPPB (ambiguous: -0.54 [95% CI -1.27, 0.19], MCI: -0.97 [95% CI -0.37, -1.58]) and PF (ambiguous: -3.3 [95% CI -6.5, -0.04], MCI: -10.5 [95% CI -18.7, -2.3]). DISCUSSION/CONCLUSION: Participants with worse results on cognitive function screening had worse adherence and derived less benefit from this pedometer-based intervention. Future exercise interventions should be developed incorporating methods to address cognitive impairment, for example, by including caregivers when planning such interventions.

Engaging Diverse Older Adults With Cognitive Impairment and Caregivers in Advance Care Planning: A Pilot Study of the Interactive PREPARE Website.

INTRODUCTION: Engaging patients with cognitive impairment in advance care planning (ACP), including completing advance directives and naming health care proxies, before they lose decision-making capacity is important. METHODS: We determined the feasibility of the PREPAREforYourCare.org ACP program among 20 diverse older adults with mild-to-moderate cognitive impairment and their caregivers in a 1-week, pre-post pilot. We examined ease-of-use, satisfaction, and feasibility using validated scales, and change in ACP Engagement scores, including knowledge, contemplation, self-efficacy, and readiness subscales (5-point scales), from baseline to 1-week. RESULTS: Participants were on average 70 years old (SD=9.0), 45% Spanish-speaking, 60% had limited health literacy, and 15% felt comfortable using the internet. Patients and caregivers rated PREPARE a mean of 8.6 (SD=1.6) and 9.4 (SD=1.1) on the 10-point ease-of-use scale, 4.7 (SD=0.4) and 4.7 (SD=0.3) on the 5-point satisfaction scale, and 4.9 (SD=0.4) and 4.8 (SD=0.6) on the 5-point feasibility scale, respectively. ACP engagement scores increased for 16 of 20 (80%) patients (P=0.03) and 16 of 20 (80%) caregivers (P=0.18). Caregivers experienced increased knowledge (3.8 to 4.7, P=0.002) and self-efficacy (3.6 to 4.5, P=0.034) for ACP. DISCUSSION: The PREPARE website was feasible and may facilitate ACP engagement among diverse older adults with cognitive impairment and their caregivers.

Measuring advance care planning behavior in Dutch adults: translation, cultural adaptation and validation of the Advance Care Planning Engagement Survey.

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.

Low Rates of Advance Care Planning (ACP) Discussions Despite Readiness to Engage in ACP Among Liver Transplant Candidates.

BACKGROUND: Patients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient's advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population. METHODS: We conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready). RESULTS: Among 170 LT candidates, median (interquartile range) age was 58 (53-65), 65% were men, MELDNa was 15 (11-21), and Child-Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child-Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care. CONCLUSION: There is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.

Making Medical Treatment Decisions for Unrepresented Patients in the ICU. An Official American Thoracic Society/American Geriatrics Society Policy Statement.

Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisciplinary committee rather than ad hoc by treating clinicians; 4) institutions should use all available information on the patient's preferences and values to guide treatment decisions; 5) institutions should manage decision-making for unrepresented patients using a fair process that comports with procedural due process; 6) institutions should employ this fair process even when state law authorizes procedures with less oversight.Conclusions: This multisociety statement provides guidance for clinicians and hospital administrators on medical decision-making for unrepresented patients in the critical care setting.

Advance Care Planning Prior to Death in Older Adults with Hip Fracture.

BACKGROUND: Although hip fractures in older adults are associated with a high degree of mortality and disability, the use of advance care planning (ACP) in this population is unknown. OBJECTIVE: To determine the prevalence of ACP and need for surrogate decision-making prior to death in older adults with hip fracture and to identify factors associated with ACP. DESIGN: Retrospective cohort study using Health and Retirement Study (HRS) interviews linked to Medicare fee-for-service claims data. PARTICIPANTS: Six hundred six decedent participants aged 65 or older who sustained a hip fracture during HRS enrollment and had a proxy participate in the exit HRS survey. MAIN MEASURES: Survey responses by proxies were used to determine ACP, defined by either advance directive completion or surrogate designation, and to assess decision-making at the end of life. Multivariate logistic regression was used to analyze correlates of ACP. KEY RESULTS: Prior to death, 54.9% of all participants had an advance directive and 68.9% had designated a surrogate decision-maker; however, 24.5% had no ACP. Of the total cohort, 32.5% required decisions to be made about treatment at the end of life and lacked capacity to make these decisions themselves. In this subset, 19.9% had no ACP. In all participants, ACP was less likely in non-white individuals (adjusted odds ratio (aOR) 0.14, 95% CI 0.06-0.31), those with less than a high school education (aOR 0.58, 95% CI 0.35-0.97), and those with a net worth below the median of the cohort (aOR 0.49, 95% CI 0.26-0.72). No clinical factors were found to be associated with ACP completion prior to death. CONCLUSIONS: A considerable number of older adults with hip fracture required surrogate decision-making at the end of life, of whom one fifth had no ACP prior to death. Clinicians providing care for these patients are uniquely poised to address ACP.

What Is a Medication-Related Problem? A Qualitative Study of Older Adults and Primary Care Clinicians.

BACKGROUND: Older adults often take multiple medications, leading to a myriad of medication-related problems. Addressing these problems requires thoughtful approaches that align with patients' perspectives and experiences. OBJECTIVE: To (1) identify and categorize medication-related problems from the patient perspective and (2) understand patient and clinician attitudes toward these problems and experiences with addressing these problems. DESIGN: Qualitative, semi-structured interviews with patients and focus groups with physicians and pharmacists. PARTICIPANTS: Twenty older adults recruited from an academic medical center and from a community senior center; 14 primary care physicians and 6 pharmacists affiliated with an academic medical center. APPROACH: Hybrid deductive-inductive thematic analysis. KEY RESULTS: Older adults identified a variety of medication-related problems that could be classified into four broad categories: (1) obtaining medications (e.g., problems with cost and insurance coverage); (2) taking medications (e.g., organization and remembering to take pills); (3) medication effects, including side effects and concerns over lack of effectiveness; and (4) communication and care coordination, including information related to medications. Many of the problems described by older adults were framed within the person's socioemotional context, including the impact of medications on interpersonal relationships, emotional wellbeing, and activities that add meaning and quality to life. In contrast, clinicians almost exclusively focused on discrete medication issues without reference to this larger context and expressed relatively little interest in learning more about their patients' perspectives. CONCLUSIONS: Older adults experience medication-related problems as inseparable from their broader life context. Incorporating the social and emotional context of medications and related communication into a problem-focused framework can guide clinicians in specific actions and interventions to address medication-related problems from the patient perspective.

Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings.

PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Goals-of-Care Conversations for Older Adults With Serious Illness in the Emergency Department: Challenges and Opportunities.

During the last 6 months of life, 75% of older adults with preexisting serious illness, such as advanced heart failure, lung disease, and cancer, visit the emergency department (ED). ED visits often mark an inflection point in these patients' illness trajectories, signaling a more rapid rate of decline. Although most patients are there seeking care for acute issues, many of them have priorities other than to simply live as long as possible; yet without discussion of preferences for treatment, they are at risk of receiving care not aligned with their goals. An ED visit may offer a unique "teachable moment" to empower patients to consider their ability to influence future medical care decisions. However, the constraints of the ED setting pose specific challenges, and little research exists to guide clinicians treating patients in this setting. We describe the current state of goals-of-care conversations in the ED, outline the challenges to conducting these conversations, and recommend a research agenda to better equip emergency physicians to guide shared decisionmaking for end-of-life care. Applying best practices for serious illness communication may help emergency physicians empower such patients to align their future medical care with their values and goals.

Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.

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.