Shared decision-making key in treating advanced heart failure

Improved therapies are helping the patients live longer. Caring for them requires ongoing conversations to ensure that treatment matches goals.

By Christine S. Moyer — Posted March 20, 2012

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Patients with advanced heart failure often prefer to receive treatment from the doctors who know them best — their primary care physicians, said the lead author of a scientific statement on managing the chronic condition.

But too often, doctors delay critical conversations about a patient’s preferences and expectations until emergency situations, when the individual’s decision-making might be impaired, said Larry A. Allen, MD, MHS, lead author of the American Heart Assn. statement, which was published online March 5 in Circulation.

Part of the problem is that physicians often have insufficient time during office visits to thoroughly discuss with patients the unpredictable nature of the disease and the benefits and downfalls of the complex treatments available, Dr. Allen said. Doctors often have limited training in shared decision-making, which is required for appropriate care of patients with advanced heart failure, he added.

The American Heart Assn. statement urges physicians to have ongoing and honest conversations with patients to help them make informed decisions about treatments that are in line with their personal goals and preferences.

The advice comes at a time when patients with heart failure are living longer due to improvements in treatments, according to Dr. Allen, assistant professor of medicine in the Division of Cardiology at the University of Colorado Anschutz Medical Center.

“That combination of a lot of people who are really sick who could get complicated advanced technology therapy sets up a great scenario to think about how should patients be involved in these complex decisions and how as clinicians do we lead that process,” he said.

About 5.7 million U.S. adults 20 and older (2.4%) have heart failure, with higher rates found among the elderly, the AHA said. About 5% of those have advanced heart failure, Dr. Allen said. In the advanced stage, symptoms significantly diminish patients’ quality of life, he said.

Discussing care with patients

The AHA statement calls on physicians to conduct an annual heart failure review, during which they should assess the patient’s prognosis and changes in symptoms and quality of life. Doctors also should determine whether the person’s goals and general care preferences have changed (link).

Similar conversations should follow any significant change in the patient’s condition, including increased symptom-burden and major life events, such as the death of a spouse, the AHA said.

When discussing interventions that could improve patients’ cardiac function or reduce their risk of sudden cardiac death, doctors are encouraged to talk about anticipated outcomes, including major adverse events and quality of life for patients and caregivers.

For patients in the terminal phase of the disease, the AHA recommends that physicians help create an end-of-life care plan. It should include discussions about deactivating devices a patient uses and his or her interest in using hospice services.

“Primary care physicians play a central role in management of a majority of complex heart failure patients,” Dr. Allen said. But they do not have to care for these patients on their own, he added.

These patients need collaborative care with primary care physicians, cardiologists and other health professionals, Dr. Allen said. “It really is a team approach.”

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Major talking points for patients with heart failure

Primary care physicians play a central role in managing many patients with complex heart failure. These are sample phrases the American Heart Assn. recommends that doctors consider using when talking to patients with the condition.

  • “Tell me about your heart disease. How have you been doing lately?”
  • “How much information would you like to know about what is happening with your heart disease?”
  • “I think you have a pretty good understanding of what is happening with your heart, but there are a few points I’d like to review and clarify.”
  • “What is important to you now?”
  • “What is your biggest concern right now?”
  • “When you think about the future, what are the things you want to avoid?”
  • “I’d like to take a moment to review the benefits and burdens of each of the treatments based on what you’ve said is important to you at this point.”
  • “One of the most difficult things about heart disease is that we can never know for sure exactly what will happen in the next weeks. We must make our best guess and decide what to do based on that information. If things change, we can always readdress this discussion at any time in the future.”

Source: “Decision Making in Advanced Heart Failure: A Scientific Statement From the American Heart Association,” March 5, Circulation (link)

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