Barriers and Solutions to Advance Care Planning among Homeless-Experienced Older Adults.

Background/Objectives: Older homeless-experienced adults have low rates of advance care planning (ACP) engagement despite high rates of morbidity and mortality. To inform intervention development, we examined potential barriers and solutions to ACP engagement. Design: Cross-sectional qualitative study. Setting: We recruited adults who were homeless in the prior three years and ≥50 years of age in the San Francisco Bay Area, and recruited clinical stakeholders from a national meeting of homeless providers. We analyzed qualitative data using thematic analysis. Measurements: We conducted semistructured interviews with homeless-experienced older adults (n = 20) and focus groups with clinical stakeholders (n = 24) about perceived barriers and solutions to ACP engagement. Results: Participants considered ACP important, reflecting on deaths of people in their networks who had died. Participant-identified barriers to ACP included poor ACP knowledge, lack of familial ties and social isolation, competing priorities, avoidance and lack of readiness, fatalism and mistrust, and lack of ACP training for clinical and nonclinical staff. They identified solutions that included framing ACP as a way to provide meaning and assert choice, providing easy-to-read written documents focused on the populations' unique needs, tailoring content and delivery, initiating ACP in nonclinical settings, such as permanent supportive housing, and providing incentives. Conclusions: Both older homeless-experienced adults and clinical stakeholders believe that ACP is important, but acknowledge multiple barriers that impede engagement. By focusing on potential solutions, including capitalizing on opportunities outside of health care settings, focusing on the period after housing, and tailoring content, there are opportunities to improve ACP uptake

Use of the Physician Orders for Scope of Treatment Program in Indiana Nursing Homes

OBJECTIVES: To assess the use of the Indiana Physician Orders for Scope of Treatment (POST) form to record nursing home (NH) resident treatment preferences and associated practices. DESIGN: Survey. SETTING: Indiana NHs. PARTICIPANTS: Staff responsible for advance care planning in 535 NHs. MEASUREMENTS: Survey about use of the Indiana POST, related policies, and educational activities. METHODS: NHs were contacted by telephone or email. Nonresponders were sent a brief postcard survey. RESULTS: Ninety-one percent (n=486) of Indiana NHs participated, and 79% had experience with POST. Of the 65% of NHs that complete POST with residents, 46% reported that half or more residents had a POST form. POST was most often completed at the time of admission (68%). Only 52% of participants were aware of an existing facility policy regarding use of POST; 80% reported general staff education on POST. In the 172 NHs not using POST, reasons for not using it included unfamiliarity with the tool (23%) and lack of facility policies (21%). CONCLUSION: Almost 3 years after a grassroots campaign to introduce the voluntary Indiana POST program, a majority of NHs were using POST to support resident care. Areas for improvement include creating policies on POST for all NHs, training staff on POST conversations, and considering processes that may enhance the POST conversation, such as finding an optimal time to engage in conversations about treatment preferences other than a potentially rushed admission process

Planting the Seed : Perceived Benefits of and Strategies for Discussing Long-Term Prognosis with Older Adults

OBJECTIVES: To characterize the goals and approaches of clinicians with experience discussing long-term prognostic information with older adults. DESIGN: We used a semistructured interview guide containing 2 domains of perceived benefits and strategies to explore why and how clinicians choose to discuss long-term prognosis, defined as life expectancy on the scale of years, with patients. SETTING: Clinicians from home-based primary care practices, community-based clinics, and academic medical centers across San Francisco. PARTICIPANTS: Fourteen physicians, including 11 geriatricians and 1 geriatric nurse practitioner, with a mean age of 40 and a mean 9 years in practice. MEASUREMENTS: Clinician responses were analyzed qualitatively using the constant comparisons approach. RESULTS: Perceived benefits of discussing long-term prognosis included establishing realistic expectations for patients, encouraging conversations about future planning, and promoting shared decision-making through understanding of patient goals of care. Communication strategies included adapting discussions to individual patient preferences and engaging in multiple conversations over time. Clinicians preferred to communicate prognosis in words and with a visual aid, although most did not know of a suitable visual aid. CONCLUSION: Engaging in customized longitudinal discussions of long-term prognosis aids clinicians in anchoring conversations about future planning and preparing patients for the end of life

Validation of Self-Reported Health Literacy Questions Among Diverse English and Spanish-Speaking Populations

BackgroundLimited health literacy (HL) contributes to poor health outcomes and disparities, and direct measurement is often time-intensive. Self-reported HL questions have not been validated among Spanish-speaking and diverse English-speaking populations.ObjectiveTo evaluate three self-reported questions: 1 "How confident are you filling out medical forms?"; 2 "How often do you have problems learning about your medical condition because of difficulty understanding written information?"; and 3 "How often do you have someone help you read hospital materials?" Answers were based on a 5-point Likert scale.DesignThis was a validation study nested within a trial of diabetes self-management support in the San Francisco Department of Public Health.ParticipantsEnglish and Spanish-speaking adults with type 2 diabetes receiving primary care.MethodsUsing the Test of Functional Health Literacy in Adults (s-TOFHLA) in English and Spanish as the reference, we classified HL as inadequate, marginal, or adequate. We calculated the C-index and test characteristics of the three questions and summative scale compared to the s-TOFHLA and assessed variations in performance by language, race/ethnicity, age, and education.Key resultsOf 296 participants, 48% were Spanish-speaking; 9% were White, non-Hispanic; 47% had inadequate HL and 12% had marginal HL. Overall, 57% reported being confident with forms "somewhat" or less. The "confident with forms" question performed best for detecting inadequate (C-index = 0.82, (0.77-0.87)) and inadequate plus marginal HL (C index = 0.81, (0.76-0.86); p<0.01 for differences from other questions), and performed comparably to the summative scale. The "confident with forms" question and scale also performed best across language, race/ethnicity, educational attainment, and age.ConclusionsA single self-reported HL question about confidence with forms and a summative scale of three questions discriminated between Spanish and English speakers with adequate HL and those with inadequate and/or inadequate plus marginal HL. The "confident with forms" question or the summative scale may be useful for estimating HL in clinical research involving Spanish-speaking and English-speaking, chronically-ill, diverse populations

Population-Based Pragmatic Trial of Advance Care Planning in Primary Care in the University of California Health System.

Introduction: Varying intensity of advance care planning (ACP) interventions at the population level has not been compared among seriously ill patients in primary care. This project will implement, test, and disseminate real-world scalable ACP interventions among primary care clinics across three University of California Health systems. The three ACP interventions are (1) distribution of an advance directive (AD) with targeted ACP messaging, (2) the AD, messaging, plus prompting patients to engage with the Prepare For Your Care website (PREPARE), and (3) the AD, messaging, PREPARE, plus Care Coordinator engagement with patients and clinicians. Methods: We will identify a population cohort of seriously ill primary care patients and implement the ACP interventions using electronic health record (EHR) patient portals and postal mailings. Forty-five clinics across the three health systems will be cluster randomized to one of the three ACP interventions. The primary outcome for the population cohort is AD or Physician Orders for Life-Sustaining Treatment documentation in the EHR. A subset of the population cohort will be surveyed to assess patient-centered outcomes, including care consistent with goals at baseline, 12 months, and 24 months. Caregivers will be interviewed if patients are unable to be surveyed or die. ACP documentation, goal concordant care, and among decedents, health care utilization will be compared among intervention arms. Study Implementation: Challenges and Contributions: The project is guided by a Study Advisory Group and Community Advisory Groups at each site to ensure rigorous patient-centered methods and consistency of implementation. Intervention fidelity will be evaluated using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. Challenges to implementation of this three-site health system trial and to intervention fidelity stem from site/clinic/system cultures, increasing attention to end-of-life care from payers and regulators, and growing pressures by health systems to implement ACP interventions. Stakeholder engagement is required to ensure consistent interventions across sites

The Quality of Physician Orders for Life-Sustaining Treatment Decisions: A Pilot Study

BackgroundPhysician Orders for Life-Sustaining Treatment (POLST) forms are used to document patient treatment preferences as medical orders. Prior research demonstrates that use of POLST alters medical treatments in a way that is consistent with the POLST orders. However, there are minimal data about the quality of POLST decisions, including whether they reflect the current preferences of well-informed patients.ObjectiveEvaluate the quality of POLST decisions.DesignChart abstraction; interviews.SubjectsNursing home residents and healthcare agents of incapacitated nursing home residents (n = 28).MeasurementsCharacteristics of the POLST conversation were assessed. Brief vignettes were used to assess knowledge about how POLST orders guide medical treatment. Current treatment preferences were elicited and compared with the patient's POLST orders to assess discordance.ResultsA majority (59%) of participants recognized the POLST form. Participants were generally accurate in their knowledge of how POLST orders guide treatment concerning cardiopulmonary resuscitation (CPR) (68%), antibiotics (74%), and artificial nutrition (79%), but less so for medical interventions (50%). Current treatment preferences were initially discordant with one or more POLST orders for 64% (18/28) of participants, but half of these discordances were resolved with further discussion (e.g., participant agreed with the existing order). Discordance by treatment decision was as follows: CPR (7%), level of medical intervention (18%), antibiotics (21%), and artificial nutrition (11%).ConclusionsDiscordance between current preferences and POLST orders is complex. Interventions are needed to support high-quality POLST decisions that are informed and concordant with current preferences

Development and Feasibility of a Structured Goals of Care Communication Guide

BackgroundDiscussing goals of care and advance care planning is beneficial, yet how to best integrate goals of care communication into clinical care remains unclear.ObjectiveTo develop and determine the feasibility of a structured goals of care communication guide for nurses and social workers.Design/setting/subjectsDevelopmental study with providers in an academic and Veterans Affairs (VA) health system (n = 42) and subsequent pilot testing with patients with chronic obstructive pulmonary disease or heart failure (n = 15) and informal caregivers (n = 4) in a VA health system. During pilot testing, the communication guide was administered, followed by semistructured, open-ended questions about the content and process of communication. Changes to the guide were made iteratively, and subsequent piloting occurred until no additional changes emerged.MeasurementsProvider and patient feedback to the communication guide.ResultsIterative input resulted in the goals of care communication guide. The guide included questions to elicit patient understanding of and attitudes toward the future of illness, clarify values and goals, identify end-of-life preferences, and agree on a follow-up plan. Revisions to guide content and phrasing continued during development and pilot testing. In pilot testing, patients validated the importance of the topic; none said the goals of care discussion should not be conducted. Patients and informal caregivers liked the final guide length (∼30 minutes), felt it flowed well, and was clear.ConclusionsIn this developmental and pilot study, a structured goals of care communication guide was iteratively designed, implemented by nurses and social workers, and was feasible based on administration time and acceptability by patients and providers

A Research Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness

Importance Poor communication by health care professionals contributes to physical and psychological suffering in patients living with serious illness. Patients may not fully understand their illness, prognosis, and treatment options or may not receive medical care consistent with their goals. Despite considerable research exploring the role of communication in this setting, many questions remain, and a clear agenda for communication research is lacking. Observations Through a consensus conference and subsequent activities, we reviewed the state of the science, identified key evidence gaps in understanding the impact of communication on patient outcomes, and created an agenda for future research. We considered 7 broad topics: shared decision making, advance care planning, communication training, measuring communication, communication about prognosis, emotion and serious illness communication, and cultural issues. We identified 5 areas in which further research could substantially move the field forward and help enhance patient care: measurement and methodology, including how to determine communication quality; mechanisms of communication, such as identifying the specific clinician behaviors that patients experience as both honest and compassionate, or the role of bias in the clinical encounter; alternative approaches to advance care planning that focus on the quality of serious illness communication and not simply completion of forms; teaching and disseminating communication skills; and approaches, such as economic incentives and other clinician motivators, to change communication behavior. Conclusions Our findings highlight the urgent need to improve quality of communication between health care professionals and patients living with serious illness through a broad range of research that covers communication skills, tools, patient education, and models of care

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

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