Understanding Experiences in Hospice: Exploring Temporal, Occupational, and Relational Dimensions Using Pictor Technique.

Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants' perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them.

Can a complex adaptive systems perspective support the resiliency of the heart failure patient - informal caregiver dyad?

PURPOSE OF REVIEW: A holistic palliative approach for heart failure care emphasizes supporting nonprofessional informal caregivers. Informal caregivers play a vital role caring for heart failure patients. However, caregiving negatively affects informal caregivers' well being, and in turn heart failure patients' health outcomes. This opinion article proposes that complex adaptive systems (CAS) theory applied to heart failure models of care can support the resiliency of the heart failure patient - informal caregiver dyad. RECENT FINDINGS: Heart failure care is enacted within a complex system composed of patients, their informal caregivers and a variety of health professionals. In a national study, we employed a CAS perspective to explore how all parts of the heart failure team function interdependently in emergent and adaptive ways. Salient in our data were the severe vulnerability of elderly heart failure patients and their long-term partners who suffered from a chronic illness. Novel approaches are needed that can quickly adapt and reorganize care when unpredictable disturbances occur in the couples' functional capacity. SUMMARY: The linear protocol-driven care models that shape heart failure guidelines, training and care delivery initiatives do not adequately capture heart failure patients' social environment. CAS is a powerful theoretical tool that can render visible the most vulnerable members of the heart failure team, and incite robust specialized holistic palliative heart failure care models.

Patients with heart failure and their partners with chronic illness: interdependence in multiple dimensions of time.

BACKGROUND: Informal 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 METHODS: From 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. RESULTS: The 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. CONCLUSION: We 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.

Transition to palliative care when transcatheter aortic valve implantation is not an option: opportunities and recommendations.

PURPOSE OF REVIEW: Transcatheter 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 FINDINGS: The 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. SUMMARY: The 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.

Case series assessing the safety of mycophenolate as part of multidrug rescue treatment regimens.

BACKGROUND: Mycophenolate mofetil (MMF), an inhibitor of lymphocyte proliferation, is emerging as a potential adjunct in the treatment of HIV-1 infection. By potentiating the activity of abacavir, MMF may improve antiviral efficacy. However, it may also lead to myelosuppression, such as was seen in patients taking hydroxyurea-containing regimens. PURPOSE: To assess the safety of MMF as adjunctive therapy for HIV infection. METHOD: Eighteen HIV-positive outpatients, given MMF (500 mg po bid) on a compassionate basis as part of their salvage therapy, were monitored for adverse effects. RESULTS: Five patients discontinued MMF between 26-68 days of follow-up due to adverse effects likely related to other factors. Among the remaining 13 patients, no new clinically significant cytopenias occurred over 107-154 days of follow-up. Three patients exhibited decreases in CD4 counts, despite decreases in plasma HIV-1 RNA. CONCLUSION: Short-term follow-up suggests that MMF (500 mg po bid) does not cause lymphocyte suppression. However, further studies are ongoing to determine its safety and efficacy profile in HIV infection.

Understanding palliative care on the heart failure care team: an innovative research methodology.

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.