Care challenges of home health patients living with dementia: a pathway forward with palliative care.

BACKGROUND: Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are frequently under pressure to find effective approaches for improving care delivery and quality. One strategy that has the potential to improve the quality of life and patient satisfaction in HHC for PLWD is the integration of palliative care. Therefore, we sought to understand the experiences and needs of PLWD and their family caregivers specifically focusing on ways that HHC and palliative care may be integrated as part of the care transition from hospital to home, to better support PLWD and their families. METHODS: We conducted a descriptive qualitative study focusing on the perspectives of patients, caregivers, and healthcare team members about palliative care delivery for patients receiving HHC. Interviews were audio-recorded and professionally transcribed. In this analysis, we specifically report on dementia-related content using an iterative, team-based thematic analysis approach. RESULTS: We identified three themes: 1) 'Living in the Whirlwind' which describes the many competing demands on caregivers time and the associated feeling of loss of control, 2) 'Thinking Ahead' which describes the importance of thinking beyond the day-to-day tasks to begin planning for the future, and 3) 'Pathways Forward' which describes the integration of palliative care into HHC to provide enhanced support for PLWD and their caregivers. CONCLUSION: In this qualitative study, our formative work identified the importance of providing anticipatory guidance (e.g., safety, advance care planning) coupled with emotional and pragmatic care supports (e.g., finding resources, navigating insurance) to sustain caregivers who are struggling with the whirlwind.

Empathic Validation in Physician-Patient Communication: An Approach to Conveying Empathy for Problems With Uncertain Solutions.

Interest in systematic approaches to improving clinical empathy has increased. However, conceptualizations of empathy are inconsistent and difficult to operationalize. Drawing on video recordings of primary care visits with older adults, I describe one particular communication strategy for conveying empathy-empathic validation. Using conversation analysis, I show that the design of empathic validations and the context in which they are delivered are critical to positive patient responses. Effective empathic validations must (a) demonstrate shared understanding and (b) support the patient's position. Physicians provided empathic validation when there was no medical solution to offer and within this context, for three purposes: (1) normalizing changes in health, (2) acknowledging individual difficulty, and (3) recognizing actions or choices. Empathic validation is a useful approach because it does not rely on patients' ability to create an "empathic opportunity" and has particular relevance for older adults.

Making Conversation Analysis Accessible: A Conceptual Guide for Health Services Researchers.

The quality of healthcare communication can impact both experiences and outcomes. We highlight aspects of communication that can be systematically examined using Conversation Analysis (CA) and provide guidance about how researchers can incorporate CA into healthcare studies. CA is a qualitative method for studying naturally occurring communication by analyzing recurrent, systematic practices of verbal and nonverbal behavior. CA involves examining audio- or video-recorded conversations and their transcriptions to identify practices speakers use to communicate and interpret behavior. We explain what distinguishes CA from other methods that study communication and highlight three accessible CA approaches that researchers can use in their research design, analysis, or implementation of communication interventions. Specifically, these approaches focus on how talk is produced (specific words, framing, and syntax), by whom, and when it occurs in the conversation. These approaches can be leveraged to generate hypotheses and to identify patterns of behavior that inform empirically driven communication interventions.

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.

Palliative Care across Settings: Perspectives from Inpatient, Primary Care, and Home Health Care Providers and Staff.

BACKGROUND: Early introduction of palliative care can improve patient-centered outcomes for older adults with complex medical conditions. However, identifying the need for and introducing palliative care with patients and caregivers is often difficult. We aim to identify how and why a multi-setting approach to palliative care discussions may improve the identification of palliative care needs and how to facilitate these conversations. METHODS: Descriptive qualitative study to inform the development and future pilot testing of a model to improve recognition of, and support for, unmet palliative care needs in home health care (HHC). Thematic analysis of semi-structured interviews with providers across inpatient (n = 11), primary care (n = 17), and HHC settings (n = 10). RESULTS: Four key themes emerged: 1) providers across settings can identify palliative care needs using their unique perspectives of the patient's care, 2) identifying palliative care needs is challenging due to infrequent communication and lack of shared information between providers, 3) importance of identifying a clinical lead of patient care who will direct palliative care discussions (primary care provider), and 4) importance of identifying a care coordination lead (HHC) to bridge communication among multi-setting providers. These themes highlight a multi-setting approach that would improve the frequency and quality of palliative care discussions. CONCLUSIONS: A lack of structured communication across settings is a major barrier to introducing and providing palliative care. A novel model that improves communication and coordination of palliative care across HHC, inpatient and primary care providers may facilitate identifying and addressing palliative care needs in medically complex older adults.

"I was gonna ask you": How patients use agency framing to display engagement in primary care.

The message that patients should be responsible for their health is pervasive. Health promotion campaigns encourage patients to "ask your doctor" about potential illnesses and treatments, preventive medicine guidelines call for patients to self-monitor to avoid future health problems, and models like shared decision-making advocate for greater patient involvement in medical decisions. Research shows that patients can participate in medical dialogue by asking questions, but that doing so is difficult due to the structure and social norms of medical visits. In this article, we ask: how can patients participate more actively in medical care? Drawing on video recordings of older patients (aged 65 and older) and primary care physicians, we use conversation analysis to describe one practice that patients use to demonstrate personal responsibility for their health; agency framing. This involves prefacing questions to the doctor with phrases that project a prior intended action, such as "I was gonna ask you", "I was gonna tell you" or "I wanted to ask you". Patients use agency framing to cast their questions as 1) independently motivated, 2) well-informed, and 3) personally responsible. Consequently, patients exert agency within the confines of the medical visit structure to resist the potential interpretation that their question was responsive to the doctor or to the local interactional context. Rather, agency framing allows patients to show that their question was considered independently. Questions designed with agency framing work to portray the speaker as a responsible patient who is not only meeting the bare minimum of expected health maintenance, but is staying ahead of medical problems. This article discusses the particular importance of this practice among older patients, for whom demonstrating a willingness and ability to cope with medical problems may be significant for maintaining independence.

Implementation of Patient Decision Support Interventions in Primary Care: The Role of Relational Coordination.

BACKGROUND: The benefits of patient decision support interventions (DESIs) have been well documented. However, DESIs remain difficult to incorporate into clinical practice. Relational coordination (RC) has been shown to improve performance and quality of care in health care settings. This study aims to demonstrate how applying RC theory to DESI implementation could elucidate underlying issues limiting widespread uptake. METHODS: Five primary care clinics in Northern California participated in a DESI implementation project. We used a deductive thematic approach guided by behaviors outlined in RC theory to analyze qualitative data collected from ethnographic field notes documenting the implementation process and focus groups with health care professionals. We then systematically compared the qualitative findings with quantitative DESI distribution data. RESULTS: Based on DESI distribution rates, clinics were placed into 3 performance categories: high, middle, and low. Qualitative data illustrated how each clinic's performance related to RC behaviors. Consistent with RC theory, the high-performing clinic exhibited frequent, timely, and accurate communication and positive working relationships. The 3 middle-performing clinics exhibited high-quality communication within physician-staff teams but limited communication regarding DESI implementation across the clinic. The lowest-performing clinic was characterized by contentious relationships and inadequate communication. LIMITATIONS: Limitations of the study include nonrandom selection of clinics and limited geographic diversity. In addition, ethnographic data collected documented only DESI implementation practices and not larger staff interactions contributing to RC. CONCLUSIONS: These findings suggest that a high level of RC within clinical settings may be a key component and facilitator of successful DESI implementation. Future attempts to integrate DESIs into clinical practice should consider incorporating interventions designed to increase positive RC behaviors as a potential means to improve uptake.

Shared medical appointments to screen for geriatric syndromes: preliminary data from a quality improvement initiative.

Older adults are at greater risk of developing conditions that affect health outcomes, quality of life, and costs of care. Screening for geriatric conditions such as memory loss, fall risk, and depression may contribute to the prevention of adverse physical and mental comorbidities, unnecessary hospitalizations, and premature nursing home admissions. Because screening is not consistently performed in primary care settings, a shared medical appointment (SMA) program was developed to fill this gap in care. The goals of the program were to improve early identification of at-risk individuals and ensure appropriate follow-up for memory loss, fall risk, and depression; facilitate discussion about prevention, diagnosis, and treatment of these conditions; implement strategies to reduce risks for these conditions; and increase access to screening and expand preventive health services for older adults. Between August 2011 and May 2013, 136 individuals aged 60 and older participated in the program. Three case studies highlighting the psychosocial and physiological findings of participation in the program are presented. Preliminary data suggest that SMAs are an effective model of regularly screening at-risk older adults that augments primary care practice by facilitating early detection and referral for syndromes that may otherwise be missed or delayed.

Persistent barriers and strategic practices: why (asking about) the everyday matters in diabetes care.

PURPOSE: The purpose of this study was to explore the everyday barriers to and practices of low-income patients managing their diabetes. METHODS: The study team conducted semistructured qualitative interviews with 20 patients with type 2 diabetes who were receiving care at safety-net clinics in Southern California. Transcripts were analyzed using grounded theory to identify emergent themes across participants. RESULTS: Participants described managing diabetes with limited financial resources as often a game of balance and negotiation, whereby purchasing healthy foods is abandoned because of a more pressing concern in their life. Although participants described strategic attempts at incorporating healthy dietary practices for diabetes management into their daily decisions, these efforts were significantly impeded by the existence of persistent and seemingly insurmountable barriers. CONCLUSIONS: Although the challenges that low-income patients face in managing their diabetes may seem insurmountable at times, there are several ways that health care providers can help reduce the burden of these challenges, including tailoring their recommendations to incorporate the everyday socioeconomic environment of patients and engaging in clear, open communication with patients.