Palliative care improves cancer, CHF, COPD, and dementia outcomes. Effective models include nurses, social workers, and home-based components, and a focus on communication, psychosocial support, and the patient or caregiver experience. High-quality research on intervention costs and cost outcomes in palliative care is limited.

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Comorbidity confers a significantly increased mortality risk even among older adults with an overall high mortality risk due to HF. Clinicians who routinely care for this population should consider the impact of comorbidity on outcomes in their overall management of HF. Such information may also be useful when considering the risks and benefits of aggressive, high-intensity life-prolonging interventions.

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BACKGROUND: Early provider-patient communication about future care is critical for patients with heart failure (HF); however, advance care planning (ACP) discussions are often avoided or occur too late to usefully inform care over the course of the disease. OBJECTIVE: To identify opportunities for physicians to engage in ACP discussions and to characterize physicians' responses to these opportunities. DESIGN: Qualitative study of audio-recorded outpatient clinic visits. PARTICIPANTS: Fifty-two patients≥65 years recently hospitalized for HF with one or more post-discharge follow-up outpatient visits, and their physicians (n=44), at two Veterans Affairs Medical Centers. APPROACH: Using content analysis methods, we analyzed and coded transcripts of outpatient follow-up visits for 1) patient statements pertaining to their future health or their future physical, psychosocial and spiritual/existential care needs, and 2) subsequent physician responses to patient statements, using an iterative consensus-based coding process. RESULTS: In 13 of 71 consultations, patients expressed concerns, questions, and thoughts regarding their future care that gave providers opportunities to engage in an ACP discussion. The majority of these opportunities (84%) were missed by physicians. Instead, physicians responded by terminating the conversation, hedging their responses, denying the patient's expressed emotion, or inadequately acknowledging the sentiment underlying the patient's statement. CONCLUSIONS: Physicians often missed the opportunity to engage in ACP despite openers patients provided that could have prompted such discussions. Communication training efforts should focus on helping physicians identify patient openers and providing a toolbox to encourage appropriate physician responses; in order to successfully leverage opportunities to engage in ACP discussions.KEY WORDS: qualitative research; advance care planning; heart failure; physician-patient communication.

Context Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members’ or caregivers’ experiences of care. Objectives To evaluate the instruments currently in use to inform next steps for research and policy in this area. Methods We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS® for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed. Results We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated. Conclusion This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings.

Objectives: Trends over time in the United States show success in rebalancing long-term services and supports (LTSS) towards increased home and community-based services (HCBS) relative to institutionalized care. However, the diffusion and utilization of HCBS may be inequitable across rural and urban residents. We sought to identify potential disparities in rural HCBS access and utilization, and to elucidate factors associated with these disparities. Design:We used qualitative interviews with key informants to explore and identify potential disparities and their associated supply-side factors. Setting and participants:We interviewed three groups of healthcare stakeholders (Medicaid administrators, service agency managers and staff, and patient advocates) from 14 states (n = 40).Measures: Interviews were conducted using a semi-structured interview guide, and data were thematically coded using a standardized codebook.Results: Stakeholders identified supply-side factors inhibiting rural HCBS access, including limited availability of LTSS providers, inadequate transportation services, telecommunications barriers, threats to business viability, and challenges to caregiving workforce recruitment and retention. Stakeholders perceived that rural persons have a greater reliance on informal caregiving supports, either as a cultural preference or as compensation for the dearth of HCBS.

Greater attention to connecting providers across the continuum, maximizing the potential of the electronic health record, and linking patient experiences to their values may help to connect ACP communication across the continuum.