A consensus conference was convened to define the current state and important gaps in knowledge and needed research on "Palliative and Supportive Care in Advanced Heart Failure."
Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews.
The conference identified gaps in current knowledge, practice, and research relating to prognostication, symptom management, and supportive care for advanced heart failure (HF). Specific conclusions include: (1) although supportive care should be integrated throughout treatment of patients with advanced HF, data are needed to understand how to best decrease physical and psychosocial burdens of advanced HF and to meet patient and family needs; (2) prognostication in advanced HF is difficult and data are needed to understand which patients will benefit from which interventions and how best to counsel patients with advanced HF; (3) research is needed to identify which interventions improve quality of life and best achieve the outcomes desired by patients and family members; (4) care should be coordinated between sites of care, and barriers to evidence-based practice must be addressed programmatically; and (5) more research is needed to identify the content and technique of communicating prognosis and treatment options with patients with advanced HF; physicians caring for patients with advanced HF must develop skills to better integrate the patient's preferences into the goals of care.
"Current guidelines recommendations suggest that interventions to reduce caregiver burden should focus on improving social support as well as control over their situation
[16-18]. A comparison of caregivers with cancer, chronic obstructive pulmonary disease and HF demonstrated that caregiver resources not patient diagnosis or illness severity were associated with caregiver burden
[Show abstract][Hide abstract] ABSTRACT: Heart failure (HF) is a frequent condition in the elderly and mortality is high. This study sought to describe the profile of those providing care in the community and their needs.
The South Australian Health Omnibus is an annual, random, face-to-face, cross sectional survey conducted within the state. Having standardized data to the whole population, the study describes the subset of the population who identify that they actively cared for someone at the end of life with HF in the five years before survey administration.
Three hundred and seventy three respondents (2.0% of the whole population; 4.9% of caregivers) reported being a caregiver of someone with HF. There were 84 active caregivers (day-to-day or intermittent hands on caregivers) for people with HF. Mean age for caregivers for those with HF was much higher than other caregivers (55.7 vs 49.4; p < 0.001) with care lasting for an average of 48.9 months (SD 66.2). People caring for those with HF were far less likely to access specialist palliative care services (38.1% vs 60.9%; p < 0.0001) despite having much greater levels of unmet needs for physical care 28.3% vs 14.1%; p = 0.008).
Study findings suggest that there is a significant burden placed on caregivers for people with HF over extended periods in the community. There are differences in access to services for these caregivers compared to those dying from other conditions, particularly cancer.
BMC Health Services Research 09/2013; 13(1):342. DOI:10.1186/1472-6963-13-342 · 1.71 Impact Factor
"Elicitation of patient preferences for care, or encouraging documentation of patient preferences was uncommon. Although prior ACP discussions were not reviewed as part of this study, our data suggest that clinicians underuse a recommended    method of care delivery. "
[Show abstract][Hide abstract] ABSTRACT: OBJECTIVE: To evaluate the extent to which physicians engage in recommended elements of advance care planning (ACP) communication during outpatient clinic visits with heart failure (HF) patients. METHODS: We conducted a qualitative content analysis of 71 audio-recorded and transcribed outpatient visits with 52 patients ≥65 years recently hospitalized for HF and their physicians (n=44). RESULTS: We identified 25 instances of ACP-related communication over 15 of the 71 visits: in 17 instances, physicians explained the nature of HF but only once was the life-limiting potential of HF mentioned. Physicians discussed goals of care in 6 instances but elicited their patients' preferences in only 2 of those instances. Finally, physicians encouraged documentation of preferences in 2 instances. CONCLUSIONS: Despite recommendations for early ACP with HF patients, physicians rarely engaged in fundamental elements of ACP discussions during outpatient visits. We suggest a stepwise approach to supporting the process of ACP communication in practice. PRACTICE IMPLICATIONS: Given the importance of ACP in helping patients plan for their future care, outpatient clinicians should be helped to incorporate these discussions in the routine care of their HF patients. Using a simple heuristic might help physicians engage in fundamental elements of ACP during busy outpatient visits.
"This conceptual model is especially useful for the investigation and management of pain in progressive diseases such as HF because it includes multiple, separate domains consistent with both prevailing health-related quality of life (HRQOL) frameworks and current clinical practice goals in palliative care. In fact, the " pain impacts dimensions of quality of life " model is compatible with the Scopes and Standards of Holistic Nursing Practice (Mariano, 2007), the Clinical Guidelines for Quality Palliative Care developed by the National Consensus Project (2009), the Consensus Statement for Palliative and Supportive Care in Advanced Heart Failure (Goodlin et al., 2004), and the National Institutes of Health State of the Science Conference Statement [for] Improving Endof-Life Care (National Institutes of Health, 2004). "
[Show abstract][Hide abstract] ABSTRACT: Total pain theory.
Describe total pain theory and apply it to research and practice in advanced heart failure (HF).
Total pain theory provides a holistic perspective for improving care, especially at the end of life. In advanced HF, multiple domains of well-being known to influence pain perception are adversely affected by declining health and increasing frailty. A conceptual framework is suggested which addresses domains of well-being identified by total pain theory.
By applying total pain theory, providers may be more effective in mitigating the suffering of individuals with progressive, life-limiting diseases.
Nursing Forum 08/2009; 44(3):175-85. DOI:10.1111/j.1744-6198.2009.00140.x
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