Perspectives
Consensus statement: palliative and supportive care in advanced heart failure

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Abstract

Background

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

Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews.

Conclusions

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.

Section snippets

Methods

Experts in advanced HF, palliative medicine, geriatrics, outcomes measurement, and health care improvement participated in the consensus conference.

An extensive literature review on advanced HF referenced symptom burden; palliative care; outcomes measurement; prognosis and mortality risk; associated problems including sleep disordered breathing, depression, and cognitive impairment; and communication between physicians and patients. Databases included Medline (1966–2003), the Cochrane Library,

Advanced HF and Palliative and Supportive Care

Although many patients and health care providers do not view HF as a life-limiting illness,3 it is a chronic disease that eventually progresses to death. In all settings studied (heart transplant clinics, hospital, hospice), the most common sources of symptom distress in advanced HF are lack of energy, weakness or fatigue, pain, dyspnea, insomnia and depression,8., 9., 10., 11., 12. yet there is a paucity of evidence with which to address palliation of these symptoms. The desire to prolong life

Conclusion

The appropriate integration of supportive care with HF management can likely make a substantive improvement in outcomes, including health status and satisfaction. A careful examination of this concurrent treatment may offer a framework for better understanding the course of advanced HF. These vital areas of investigation can lead to the development and implementation of a patient-centered HF care model that offers more informed choices and support for patients and families and allocates scarce

Acknowledgments

The authors wish to thank Jill Rhead, MA, for her assistance with medical illustration.

Conference attendees: Recommendations for participants came from the American Heart Association, the American College of Cardiology, the Heart Failure Society of America, the American Academy of Hospice and Palliative Medicine, the National Hospice Work Group, the National Hospice and Palliative Care Organization, the Hospice and Palliative Nurses Association, the National Institute on Nursing Research, the

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    Funded by the Agency for Healthcare Research and Quality (R13 HS13804-01) and the Robert Wood Johnson Foundation (044913).

    Perspectives reflect the views of the author(s) and are not necessarily the views of the Editors of the Journal of Cardiac Failure or the Heart Failure Society of America.

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