Action plans increase advance care planning documentation and engagement among English and Spanish-speaking older adults.

BACKGROUND: Advance care planning (ACP) has been reconceptualized as a health behavior. Action plans (APs), or patient-directed mini contracts, improve behavior change. However, no prior studies have assessed whether APs can increase ACP documentation and engagement. METHODS: We included English and Spanish-speaking primary care patients from San Francisco, ≥55 years of age, with ≥2 serious or chronic illnesses. Participants were in the intervention arm of the PREPAREforYOURcare.org trial and asked at baseline to choose 1 of 5 actions (e.g., choose a surrogate). At 6 months, we assessed whether participants completed their AP and if completion was associated with demographics, electronic health record (EHR) ACP documentation, and five-point ACP Engagement Survey scores. We used t-tests, chi-squared, multivariate analysis adjusted for baseline ACP and clustering by physician, and qualitative thematic analysis to explore reasons for non-completion. RESULTS: The mean age of 586 participants was 65 ± 10 years; 44.0% women, 45.9% Spanish-speaking, 31.4% had limited health literacy, and 43% completed an AP at 6 months; surrogate-related (47.4%), tell others about medical wishes (33.7%), ask clinicians questions (13.7%), and decide what matters most in life (5.2%). Participants with limited versus adequate health literacy were less likely to complete an AP (25.4% vs 35.9%, p = 0.01). Completing an AP was associated with greater ACP EMR documentation 49.8% vs 35.6%, p < 0.001 (adjusted odds ratio: 2.06; 95% CI [1.43-2.97]) and engagement (adjusted five-point scores [3.69; 95% CI 3.57-3.81 vs 3.10; 95% CI: 2.98-3.21], p < 0.001). Themes for non-completion included not being ready and logistical issues (e.g., surrogate deceased). CONCLUSIONS: Among English and Spanish-speaking older adults, creating an ACP AP resulted in greater documentation and engagement. APs may help facilitate ACP behavior change as part of effective ACP interventions. Additional support may be needed for patients with limited health literacy and those facing logistical barriers.

Increasing goals of care conversations in primary care: Study protocol for a cluster randomized, pragmatic, sequential multiple assignment randomized trial.

BACKGROUND: Goals of care conversations explore seriously ill patients' values to guide medical decision making and often inform decisions about life sustaining treatments. Ideally, conversations occur before a health crisis between patients and clinicians in the outpatient setting. In the United States Veterans Affairs (VA) healthcare system, most conversations still occur in the inpatient setting. Strategies are needed to improve implementation of outpatient, primary care goals of care conversations. METHODS: We plan a cluster randomized (clinician-level) sequential, multiple assignment randomized trial to evaluate the effectiveness of patient implementation strategies on the outcome of goals of care conversation documentation when delivered in combination with clinician implementation strategies. Across three VA healthcare system sites, we will enroll primary care clinicians with low rates of goals of care conversations and their patients with serious medical illness in the top 10th percentile of risk of hospitalization or death. We will compare the effectiveness of sequences of implementation strategies and explore how patient and site factors modify implementation strategy effects. Finally, we will conduct a mixed-methods evaluation to understand implementation strategy success or failure. The design includes two key innovations: (1) strategies that target both clinicians and patients and (2) sequential strategies with increased intensity for non-responders. CONCLUSION: This study aims to determine the effect of different sequences and combinations of implementation strategies on primary care documentation of goals of care conversations. Study partners, including the VA National Center for Ethics in Health Care and Office of Primary Care, can consider policies based on study findings.

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.

Health Care Navigators for Perioperative Advance Care Planning.

This cohort study evaluates the addition of a patient-centered intervention to an advance care planning process for older surgical patients.

Survival, Function, and Cognition After Hospitalization in Long-Term Acute Care Hospitals.

Importance: More than 70 000 Medicare beneficiaries receive care in long-term acute care hospitals (LTCHs) annually for prolonged acute illness. However, little is known about long-term functional and cognitive outcomes of middle-aged and older adults after hospitalization in an LTCH. Objective: To describe survival, functional, and cognitive status after LTCH hospitalization and to identify factors associated with an adverse outcome. Design, Setting, and Participants: This retrospective cohort study included middle-aged and older adults enrolled in the Health and Retirement Study (HRS) with linked fee-for-service Medicare claims. Included participants were aged 50 years or older with an LTCH admission between January 1, 2003, and December 31, 2016, with HRS interviews available before admission. Data were analyzed between November 1, 2021, and June 30, 2023. Main Outcomes and Measures: Function and cognition were ascertained from HRS interviews conducted every 2 years. The primary outcome was death or severe impairment in the 2.5 years after LTCH hospitalization, defined as dependencies in 2 or more activities of daily living (ADLs) or dementia. Multivariable logistic regression was performed to evaluate associations with a priori selected risk factors including pre-LTCH survival prognosis (Lee index score), pre-LTCH impairment status, and illness severity characterized by receipt of mechanical ventilation and prolonged intensive care unit stay of 3 days or longer. Results: This study included 396 participants, with a median age of 75 (IQR, 68-82) years. Of the participants, 201 (51%) were women, 125 (28%) had severe impairment, and 318 (80%) died or survived with severe impairment (functional, cognitive, or both) within 2.5 years of LTCH hospitalization. After accounting for acute illness characteristics, prehospitalization survival prognosis as determined by the Lee index score and severe baseline impairment (functional, cognitive, or both) were associated with an increased likelihood of death or severe impairment in the 2.5 years after LTCH hospitalization (adjusted odds ratio [AOR], 3.2 [95% CI, 1.7 to 6.0] for a 5-point increase in Lee index score; and AOR, 4.5 [95% CI, 1.3 to 15.4] for severe vs no impairment). Conclusions and Relevance: In this cohort study, 4 of 5 middle-aged and older adults died or survived with severe impairment within 2.5 years of LTCH hospitalization. Better preadmission survival prognosis and functional and cognitive status were associated with lower risk of an adverse outcome, and these findings should inform decision-making for older adults with prolonged acute illness.

Livestream, group movement program for people living with cognitive impairment and care partners: A randomized clinical trial.

INTRODUCTION: There are few widely-available, evidence-based options to support quality of life (QOL) for people living with Alzheimer's disease and related dementias. METHODS: We performed a randomized, controlled trial with a Waitlist control group to determine whether an online, livestream, mind-body, group movement program (Moving Together, 1 hour, 2 days/week, 12 weeks) improves QOL in people with cognitive impairment (PWCI) or care partners (CPs) and explore mechanisms of action. The primary outcome for both participants was self-reported QOL. Secondary outcomes and potential mediators included mobility, isolation, well-being, cognitive function, and sleep in PWCI and burden, positive emotions, caregiver self-efficacy, stress management, and sleep in CPs. Blinded assessors collected outcome data at baseline, 12, and 24 weeks. We assessed adverse events including falls through monthly check-in surveys and collected qualitative data through evaluation surveys. Intention-to-treat analyses used linear mixed models to compare mean change over time between groups and calculated standardized effect sizes (ESs). RESULTS: Ninety-seven dyads enrolled (PWCI: age 76 ± 11 years, 43% female, 80% non-Hispanic White; CPs: age 66 ± 12 years, 78% female, 71% non-Hispanic White); 15% withdrew before 12 weeks and 22% before 24 weeks. PWCI self-reported significantly better QOL from baseline to 12 weeks in the Moving Together group compared to the Waitlist group (ES = 0.474, p = 0.048) and CPs self-reported improved ability to manage stress (ES = 0.484, p = 0.021). Improvements in participant self-reported QOL were mediated by improvements in their self-reported well-being and CP-reported ability to manage stress. Results were similar when the Waitlist group participated in the program (QOL ES = 0.663, p = 0.006; stress management ES = 0.742, p = 0.002) and were supported by qualitative data. Exploratory analyses suggested possible fall reduction in PWCI. There were no study-related serious adverse events. DISCUSSION: Online programs such as Moving Together offer a scalable strategy for supporting high QOL for PWCI and helping CPs manage stress. TRIAL REGISTRATION: ClinicalTrials.gov NCT04621448. Highlights: The approval of new medications that slow cognitive decline in people living with Alzheimer's disease and related disorders (ADRD) has raised hope and excitement. However, these medications do not appear to impact quality of life, which is often considered by patients and care partners to be the most important outcome.In this randomized clinical trial, we found that an evidence-based, online, livestream, mind-body, group movement program significantly and meaningfully improves self-rated quality of life in people with ADRD and helps care partners manage stress. Mediation analyses revealed that the key drivers of improvements in participants' quality of life were improvements in their feelings of well-being and care partners' ability to manage stress. Exploratory analyses also suggested a 30% reduction in falls.These results are important because they suggest that an online program, which is available now and can be performed by people from the comfort of home or other location of choice, could be recommended as a complement or alternative to new therapies to help maximize quality of life for people living with ADRD and their care partners.

A Mixed-Methods Comparison of Interventions to Increase Advance Care Planning.

PURPOSE: Although interventions can increase advance care planning (ACP) engagement, it remains unclear which interventions to choose in primary care settings. This study compares a passive intervention (mailed materials) to an interactive intervention (group visits) on participant ACP engagement and experiences. METHODS: We used mixed methods to examine ACP engagement at baseline and six months following two ACP interventions. Eligible patients were randomized to receive mailed materials or participate in two ACP group visits. We administered the 4-item ACP Engagement survey (n = 110) and conducted interviews (n = 23). We compared mean scores and percent change in ACP engagement, analyzed interviews with directed content analysis to understand participants' ACP experiences, and integrated the findings based on mailed materials or group visits intervention. RESULTS: All participants demonstrated increased ACP engagement scores. At six months, group visit participants reported higher percent change in mean overall score compared with mailed materials participants (+8% vs +3%, P < .0001). Group visits participants reported that being prompted to think about end-of-life preferences, gaining knowledge about ACP, and understanding the value of completing ACP documentation influenced their ACP readiness. While both interventions encouraged patients to start considering and refining their end-of-life preferences, group visits made patients feel more knowledgeable about ACP, highlighted the importance of completing ACP documentation early, and sparked further ACP discussions with others. CONCLUSIONS: While primary care patients may benefit from mailed ACP materials, patients reported increased readiness after ACP group visits. Group visits emphasized the value of upstream preparation, ongoing conversations, and increased knowledge about ACP.

Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

An Integrative Review of the State of POLST Science: What Do We Know and Where Do We Go?

OBJECTIVES: POLST is widely used in the care of seriously ill patients to document decisions made during advance care planning (ACP) conversations as actionable medical orders. We conducted an integrative review of existing research to better understand associations between POLST use and key ACP outcomes as well as to identify directions for future research. DESIGN: Integrative review. SETTING AND PARTICIPANTS: Not applicable. METHODS: We queried PubMed and CINAHL databases using names of POLST programs to identify research on POLST. We abstracted study information and assessed study design quality. Study outcomes were categorized using the international ACP Outcomes Framework: Process, Action, Quality of Care, Health Status, and Healthcare Utilization. RESULTS: Of 94 POLST studies identified, 38 (40%) had at least a moderate level of study design quality and 15 (16%) included comparisons between POLST vs non-POLST patient groups. There was a significant difference between groups for 40 of 70 (57%) ACP outcomes. The highest proportion of significant outcomes was in Quality of Care (15 of 19 or 79%). In subdomain analyses of Quality of Care, POLST use was significantly associated with concordance between treatment and documentation (14 of 18 or 78%) and preferences concordant with documentation (1 of 1 or 100%). The Action outcome domain had the second highest positive rate among outcome domains; 9 of 12 (75%) Action outcomes were significant. Healthcare Utilization outcomes were the most frequently assessed and approximately half (16 of 35 or 46%) were significant. Health Status outcomes were not significant (0 of 4 or 0%), and no Process outcomes were identified. CONCLUSIONS AND IMPLICATIONS: Findings of this review indicate that POLST use is significantly associated with a Quality of Care and Action outcomes, albeit in nonrandomized studies. Future research on POLST should focus on prospective mixed methods studies and high-quality pragmatic trials that assess a broad range of person and health system-level outcomes.

"It Gives Me Peace of Mind So I Can Focus on Healing": Views on Advance Care Planning for Older Surgical Patients.

Introduction: The period of time before an elective operation may be an opportune time to engage older adults in advance care planning (ACP). Past interventions have not been readily incorporated into surgical workflows leaving a need for ACP tools that are generalizable, easy to implement, and effective. Design: This is a qualitative study. Setting and Subjects: Older adults with a history of cancer and a recent major operation were recruited through their surgical oncologist at a tertiary medical center in the United States. Interviews were conducted to determine how to adapt the validated PrepareForYourCare.org ACP program with electronic health record prompts for the perioperative setting and openness to introducing ACP during a presurgical visit. We used qualitative content analysis to determine themes. Results: Eight themes were identified: (1) ACP as static and private, (2) people expected a prompt, (3) family trusted to do the "right" thing, (4) lack of relationship or comfort with providers, (5) a team-based approach can be helpful, (6) surgeon's expertise (e.g., prognosis and surgical risk), (7) ACP belongs on the surgical checklist, and (8) patients would welcome a conversation starter. Discussion: Older surgical patients are interested in engaging with ACP, particularly if prompted, and believe it has a place on the preoperative "checklist." Conclusions: To effectively engage patients with ACP, a combination of routine prompts by the health care team and patient-centered follow-up may be required.

Barriers and Facilitators to Exercise in Older Adults Awaiting Kidney Transplantation and Their Care Partners.

Rationale & Objective: Despite guidelines calling to improve physical activity in older adults, and evidence suggesting that prekidney transplant physical function is highly associated with posttransplant outcomes, only a small percentage of older patients treated with dialysis are engaged in structured exercise. We sought to elucidate barriers and facilitators of exercise among older adults treated with dialysis awaiting transplant and their care partners. Study Design: Individual, in-depth, cognitive interviews were conducted separately for patients and care partners through secure web-conferencing. Setting & Participants: Twenty-three patients (≥50 years of age, treated with dialysis from the University of San Francisco kidney transplantation clinic, with a short physical performance battery of ≤10) and their care partners. Analytical Approach: All audio interviews were transcribed verbatim. Three investigators independently coded data and performed qualitative thematic content. The interview guide was updated iteratively based on the Capability Opportunity Motivation Behavior model. Results: Patients' median age was 60 years (57 ± 63.5) and care partners' median ages was 57 years (49.5 ± 65.5). Thirty-nine percent of patients and 78% of care partners were female, 39% of patients and 30% of care partners self-identified as African American, and 47% of dyads were spouse or partner relationships. Major themes for barriers to pretransplant exercise included lack of understanding of an appropriate regimen, physical impairments, dialysis schedules, and safety concerns. Major facilitators included having individualized or structured exercise programs, increasing social support for patients and care partners, and motivation to regain independence or functionality or to promote successful transplantation. Limitations: Participants geographically limited to Northern California. Conclusions: Although patients and care partners report numerous barriers to pretransplant exercise and activity, they also reported many facilitators. An individualized, structured, home-based exercise program could circumvent many of the reported barriers and allow older patients to improve pretransplant physical function.

Although exercise can improve the fitness of older adults treated with dialysis for kidney transplantation and reduce posttransplant complications, many such individuals do not exercise. We sought to elicit perspectives on barriers and facilitators to prekidney transplant exercises from older adults treated with dialysis and their care partners. We found that although patients and care partners had unique perspectives, they shared many barriers (such as physical and/or cognitive impairment, difficulty scheduling around dialysis, lack of guidance on exercise, and reduced exercise motivation related to dialysis) and several facilitators (such as desire to regain functionality and participate in life and motivation for successful transplantation). A shared interest among patients and care partners in joint participation in structured and home-based exercise may represent a tool to overcome barriers to pretransplant exercise.

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 from historically marginalized populations have lower levels of preparedness for care planning.

BACKGROUND: Surrogate preparedness for medical decision-making is an important part of care planning. This study examined preparedness and engagement among historically marginalized surrogates. METHODS: Surrogates were included if they were named medical decision-makers by patients ≥55 years at a San Francisco safety-net and Veterans Affairs hospital. We assessed preparedness for medical decision-making by asking if surrogates had been formally asked to be the medical decision-maker, if patients had discussed medical wishes with surrogates, and if the surrogate role and these medical wishes had been documented. We assessed surrogate confidence and readiness using a modified Surrogate ACP Engagement Survey. We used Wilcoxon rank-sum tests to measure the association of engagement scores with surrogate characteristics. RESULTS: Of 422 surrogates, their mean age was 53 years (SD ±14.5), 73% were from minoritized groups, 38% were Spanish-speaking, and 15% had limited health literacy. For preparedness outcomes, 13% of surrogates were not formally asked to play this role, 46% reported the patient had not discussed end-of-life medical wishes, and 51% reported there had been no formal documentation of the surrogate role. Surrogates reported higher confidence 4.43/5 (SD ± 0.64) than readiness 3.70 (1.22) for decision-making (p < 0.001). Confidence and readiness scores were lower among historically marginalized participants. CONCLUSION: More resources are needed to prepare surrogate decision-makers from historically marginalized communities for discussing patient's goals of care and treatment preferences.

Assessing Representativeness of Seriously Ill Patient Survey Responders in a Pragmatic Clinical Trial.

Objective: Pragmatic trials often implement an intervention across a population of patients but require information unavailable at the population level that must be reported by a subset of patients. In this pragmatic clinical trial, we compared characteristics of seriously ill patients with those who completed a survey evaluating advance care planning across 3 academic health systems. Methods: A deliberate process including health system and external stakeholders and patients was used to design materials for and the approach to seriously ill patients. We developed a survey and conducted a multistep process to identify seriously ill primary care patients. We evaluated the relationships of age, gender, race and ethnicity, and vulnerability using the social vulnerability index in this population, and explored the representativeness of survey respondents compared with the underlying seriously ill population in terms of age, race and ethnicity, and vulnerability measured. Results: About 5% (8707 patients) of the primary care population was classified as seriously ill, 5351 were mailed a survey and 1100 provided survey responses. Hispanic and Black patients were younger than White patients, and Black and Hispanic patients were more vulnerable than White and Asian patients and patients of other races. Representativeness was high across age and race and ethnicity, although White and Hispanic patients were more likely to respond than Black and Asian patients and patients of other races. Vulnerability in the surveyed sample was nearly identical to the population. Conclusions: A tailored survey and recruitment strategy yielded a representative sample of seriously ill, largely older, primary care respondents in the context of a pragmatic clinical trial.