Difficult discussions now can ease difficult decisions later for patients with heart failure

March 05, 2012

Statement Highlights:

Shared decision making extends beyond informed consent, requiring that healthcare providers and patients consider information together and work toward consensus.
Changes in healthcare policy and reimbursement are needed to support effective communication, high-quality medical decisions and patient-centered care.

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DALLAS, March 5, 2012 – Patients with advanced heart failure should have ongoing conversations with their healthcare providers to make informed decisions about treatment options that match their personal values, goals and preferences, according to a scientific statement published in the American Heart Association journal, Circulation.

Shared decision making extends beyond informed consent, requiring that healthcare providers and patients consider information together and work toward consensus. This process should focus on the outcomes that are most important to the patients, including not only survival but also relief of symptoms, quality of life and living at home.

Decision making for advanced heart failure is becoming particularly important but also increasingly challenging as patients are living longer with their heart disease and treatment options continue to expand, including complex new technologies.

“For patients with advanced heart failure, the decision-making process should be proactive, anticipatory, and patient-centered. This involves talking about goals of care, expectations for the future, and the full range treatment options, including palliative care,” said lead author Larry A. Allen, M.D., M.H.S., assistant professor of medicine at the University of Colorado Anschutz Medical Center.

As the time required for shared decision making is difficult to fit into a regular clinic visit in the middle of a busy clinical practice, the authors propose an annual review to discuss prognosis, consider reasonable therapies, and clarify the patient’s values, goals and preferences. This review is in addition to, not a replacement for, additional discussions triggered by events such as hospitalizations and other changes in the patient’s health. “The process of checking in with patients on a regular basis is extremely important because heart failure and general health change over time,” said Dr. Allen.

In the United States, nearly three percent of adults have heart failure, with higher rates among older patients. Heart failure occurs when the heart becomes too weak to pump enough blood to meet the body’s needs, causing shortness of breath, ankle swelling, and fatigue. Many diseases can weaken the heart, including blocked blood vessels, high blood pressure, and other conditions.

Heart failure tends to progress over time. Early heart failure can often be managed with oral medicines and lifestyle changes in diet, stopping smoking and exercise; however, advanced heart failure requires consideration of additional treatments, including pacemaker devices and surgically implanted mechanical pumps to increase blood flow to the body. In a small number of cases, heart transplantation may be an option. Central to the decision making process is understanding that “doing everything” is not always the right thing. For many patients with advanced disease, receiving symptom relief, comfort, and support along with medical therapy are preferred.

The authors caution that shared decision making will be limited until the healthcare system shifts its emphasis from reimbursement for specific therapies to better reimbursement for meaningful conversations about which therapies should and should not be pursued for each individual patient.

Co-authors are: Lynne W. Stevenson, M.D.; Kathleen L. Grady, Ph.D., A.P.N.; Nathan E. Goldstein, M.D.; Daniel D. Matlock, M.D, M.P.H.; Robert M. Arnold, M.D.; Nancy R. Cook, Sc.D.; G. Michael Felker, M.D., M.H.S.; Gary S. Francis, M.D.; Paul J. Hauptman, M.D.; Edward P. Havranek, M.D.; Harlan M. Krumholz, M.D., M.P.H.; Donna Mancini, M.D.; Barbara Riegel, D.N.Sc., R.N.; and John A. Spertus, M.D., M.P..H.

Author disclosures are on the manuscript.

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