Context-There is a growing call to integrate palliative care for patients with advanced heart failure (HF). However, the knowledge to inform integration efforts comes largely from interview and survey research with individual patients and providers. This work has been critically important in raising awareness of the need for integration, but it is insufficient to inform solutions that must be enacted not by isolated individuals but by complex care teams. Research methods are urgently required to support systematic exploration of the experiences of patients with HF, family caregivers, and health care providers as they interact as a care team.Objectives-To design a research methodology that can support systematic exploration of the experiences of patients with HF, caregivers, and health care providers as they interact as a care team.Methods-This article describes in detail a methodology that we have piloted and are currently using in a multisite study of HF care teams.Results-We describe three aspects of the methodology: the theoretical framework, an innovative sampling strategy, and an iterative system of data collection and analysis that incorporates four data sources and four analytical steps.Conclusion-We anticipate that this innovative methodology will support groundbreaking research in both HF care and other team settings in which palliative integration efforts are emerging for patients with advanced nonmalignant disease.
BackgroundInformal caregivers play a vital role in supporting patients with heart failure (HF). However, when both the HF patient and their long-term partner suffer from chronic illness, they may equally suffer from diminished quality of life and poor health outcomes. With the focus on this specific couple group as a dimension of the HF health care team, we explored this neglected component of supportive care.Materials and methodsFrom a large-scale Canadian multisite study, we analyzed the interview data of 13 HF patient–partner couples (26 participants). The sample consisted of patients with advanced HF and their long-term, live-in partners who also suffer from chronic illness.ResultsThe analysis highlighted the profound enmeshment of the couples. The couples’ interdependence was exemplified in the ways they synchronized their experience in shared dimensions of time and adapted their day-to-day routines to accommodate each other’s changing health status. Particularly significant was when both individuals were too ill to perform caregiving tasks, which resulted in the couples being in a highly fragile state.ConclusionWe conclude that the salience of this couple group’s oscillating health needs and their severe vulnerabilities need to be appreciated when designing and delivering HF team-based care.
Purpose of reviewTranscatheter aortic valve implantation (TAVI) is the recommended treatment for most patients with symptomatic aortic stenosis at high surgical risk. However, TAVI may be clinically futile for patients who have multiple comorbidities and excessive frailty. This group benefits from transition to palliative care to maximize quality of life, improve symptoms, and ensure continuity of health services. We discuss the clinical determination of utility and futility, explore the current evidence guiding the integration of palliative care in procedure-focused cardiac programs, and outline recommendations for TAVI programs.Recent findingsThe determination of futility of treatment in elderly patients with aortic stenosis is challenging. There is a paucity of research available to guide best practices when TAVI is not an option. Opportunities exist to build on the evidence gained in the management of end of life and heart failure. TAVI programs and primary care providers can facilitate improved communication and processes of care to provide decision support and transition to palliative care.SummaryThe increased availability of transcatheter options for the management of valvular heart disease will increase the assessment of people with life-limiting conditions for whom treatment may not be an option. It is pivotal to bridge cardiac innovation and palliation to optimize patient outcomes.
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