For advanced heart failure patients and their doctors, making good decisions requires teamwork. Through shared decision making, doctors and patients consider both the options and the patient’s preferences before charting a treatment course.
When heart failure (HF) progresses to an advanced stage, difficult decisions must be made. Do I want to receive aggressive treatment? Is quality of life more important than living as long as possible? How do I feel about resuscitation?
What is advanced heart failure?
Of the 5.7 million Americans living with heart failure, about 10 percent have advanced heart failure. The condition is considered advanced when conventional heart therapies and symptom management strategies no longer work. You feel shortness of breath and other symptoms even at rest.
In the American Heart Association and American College of Cardiology’s A-to-D staging system, advanced heart failure is stage D. Another classification system, developed by the New York Heart Association, grades the severity of symptoms on a 1-to-4 scale. Your symptom severity number can fluctuate, even within a single day, depending on how you feel.
In its early stages, heart failure can often be managed with medication and a healthy lifestyle. As the disease progresses and the heart becomes weaker, treatment gets more complex. This is the time to have difficult, yet important, conversations with your family and doctor about the care you want to receive.
What is shared decision making?
When heart failure progresses to an advanced stage, many treatment options still exist. The decisions, including a do-everything approach or a comfort strategy and everything in between aren’t easy. That’s why the American Heart Association released recommendations that serve as a roadmap to decision making in advanced heart failure. The goal: A partnership between patient and doctor, where the medical options are honestly discussed and decisions are made based on what the patient wants. Shared decision making means you don’t have to make decisions on your own.
Doctor-patient conversations about treatment options, the risks and benefits, and future what-if scenarios should happen early and often, said Larry A. Allen, M.D., M.H.S., an assistant professor of medicine at the University of Colorado Anschutz Medical Center, who helped write the recommendations.
“We want patients to understand their disease, what the range of future possibilities are, and what therapies they might be able to choose,” Allen said. “You don’t want to have to start from zero when a big medical event happens that requires tough decision making. Hope for the best, but plan for what may come.”
Doctors provide the medical facts and figures, you provide your personal goals and preferences. Together, and possibly with input from family and friends, you and your doctor build a care plan.
To guide shared decision making, the American Heart Association recommends:
- An annual heart failure review to discuss how well you are functioning, current treatment goals, and your preferences for treating possible emergencies, such as kidney failure or sudden cardiac arrest.
- “Milestone” discussions to reassess treatment goals following a major event, such as a defibrillator shock, hospitalization or significant loss of function.
- Honest and thorough conversations about major side effects of treatment, quality of life, loss of independence, impact of worsening symptoms, and increased commitment by caregivers and families.
- Considering palliative care, offered alongside medical treatment, to help manage symptoms and assist patients and families with tough decisions.
- Developing a care plan for the end of life that ensures your needs and wishes are met.
“It’s like an onion,” Dr. Allen said. “You get exposed to it, you process it, you get more information, and then you sort through how it relates to your goals, values and preferences.”
- Recognizing Advanced Heart Failure and Knowing Your Options
- Planning Ahead
- Communicating With Your Healthcare Provider
- Overcoming Barriers to Shared Decision Making
This content was last reviewed on 04/06/2015.