Congestive Heart Failure is the single most expensive chronic progressive disease in the United States, and it kills nearly 40% of newly diagnosed people each year, which equates to roughly one in three people who will be diagnosed with and die of the disease before the end of the first year. The disease burden not only affects how the nation’s healthcare dollars are spent, but also the people who live with the disease. Until recently, palliative and hospice care were thought to be treatments exclusive to those diagnosed with terminal cancer. A wealth of research exists supporting the positive impact that palliative medicine has on the quality of life of those afflicted with cancer.
As Americans live longer, their risk for cardiovascular disease increases, as does their risk for developing congestive heart failure. It would be prudent for healthcare professionals to identify how palliative and hospice care contribute to the perceived quality of life of those people afflicted with congestive heart failure and whether people prefer aggressive care that focuses on lengthening life or comfort care that facilitates a good quality of life during the end stages of disease. This piece explores current evidence based research to answer a clinical question: “In heart failure patients, how does early entry into palliative and hospice care compared to aggressive medical treatment affect quality of life over the last weeks or months of life?”
Search Methods and Results
A literature search using CINAHL, PubMed, Sage Publications, MD Consult, Ovid, Science Direct, Cochrane Reviews, and NCBI revealed seven relevant documents. All of the evidence would be considered conceptual, theoretical, or clinical and in narrative form. Search terms included: “end stage heart failure, congestive heart failure management, congestive heart failure and palliative care, congestive heart failure and quality of life, congestive heart failure and end of life, congestive heart failure and patient preference, hospice care and congestive heart failure, advance care planning and heart failure, end stage heart failure and treatment options.”
Findings
The literature search revealed a significant need for more research to examine specific prognostic indicators that would signal primary healthcare providers or cardiologists to initiate discussions related to palliative care or hospice care for the management of advanced or end stage heart failure. The available literature frequently mentions that the unpredictable trajectory of congestive heart failure contributes to not only the difficulty providers have discussing poor prognosis, but their hesitancy to discuss palliative care or hospice options. While patients have voiced their preference to know about options such as palliative care or hospice early into the diagnosis of heart failure, rather than at end stage, healthcare providers are often ill equipped with the communication skills to maintain shared decision making throughout the progression of congestive heart failure. There is a clear disconnect in the continuity of care of congestive heart failure patients who enter into the more advanced stages of disease, and literature suggests that this is where many of these patients fall through the cracks in receiving timely and quality care toward the end of life.
Furthermore, there is no universal framework that focuses on items such as quality of life, so advance care planning continues to be the gold standard of identifying the unique individual goals and wishes of each heart failure patient. Unfortunately, providers may not possess the education with respect to hospice and palliative care to effectively facilitate these conversations with their patients. Frequent themes also included the need to learn more about the attitudes and views about death and dying, death and dying within the aging process, as well as the feelings and experiences that are unique to the heart failure patient. Because palliative care and hospice have been traditionally aimed at those with cancer, significant and credible studies are almost non- existent in the area of using these treatment options with congestive heart failure patients. Equally sparse is data to support if or how palliative and hospice care impacts the quality of life of those who live with the disease. One central theme persists and continues to be problematic for researchers seeking to establish credible evidence based practice with regard to congestive heart failure patients toward the end of life: the unpredictable trajectory unique to each individual person.
Bibliography
Davis, M., Albert, N., & Young, J. (2005). Palliation of Heart Failure. American Journal of Hospice & Palliative Medicine , 211-222.
Goodlin, S. (2009). Palliative Care In Congestive Heart Failure. Journal of the American College of Cardiology, 386-96.
Hauptman, P. J. (2006). Palliation In Heart Failure: When Less and More are More . American Journal of Hospice and Palliative Medicine , 150-152.
Howlett, J., Morrin, L., & Fortin, M. e. (2010). End of life planning in heart failure: It should be the end of the beginning. Canadian Journal of Cardiology, 135-141.
MacIver, J., Rao, V., & Delgado, D. e. (2008). Choices; A Study of Preferences For End of Life Treatments in Patients With Advanced Heart Failure . The Journal of Heart and Lung Transplantation , 1002-1007.
Martin, D. K. (2011). Palliation of Dyspnea in Patients With Heart Failure. Dimensions of Critical Care Nursing, 144-149.
Ramani, G., Uber, P., & Mehra, M. (2010). Chronic Heart Failure: Contemporary Diagnosis and Treatment. Symposium On Cardiovascular Diseases (pp. 180-195). Baltimore: Mayo Foundaton For Medical Education and Research.
I’ve been working hard to keep it on people’s minds. Appreciate that larger publications are slowly starting to take notice of her case.
