Advanced Heart Failure

family sitting on couch

Even for Advanced HF, there are treatment options

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?

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.

What is advanced heart failure?

Of the more than 6 million Americans living with heart failure, about 10 percent have advanced heart failure. In short, that means conventional heart therapies and symptom management strategies are no longer working. Someone with advanced heart failure feels 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, medication and a healthy lifestyle can help manage heart failure. But as the disease progresses and the heart becomes weaker, treatment gets more complex. That’s the time to have difficult, yet important, conversations with your family and your doctor about the care you want to receive.

What is shared decision-making?

When heart failure progresses to an advanced stage, there are still many treatment options. The decisions – ranging from “do everything possible” to “strive for comfort” – 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 you and your doctor, where medical options are honestly discussed, and decisions are made based on what you want. Shared decision-making means you don’t have to make decisions on your own.

Doctor-patient conversations about treatment options, their risks and benefits as well as future “what-if” scenarios should happen early and often, according to experts who helped draft the AHA recommendations. This early dialogue means you’re not blindsided when a big medical event happens that requires tough decision-making.

Doctors provide the medical facts and figures, while you provide your personal goals and preferences. Together – and often 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 you and your family with tough decisions. Developing a care plan for the end of life that ensures your needs and wishes are met.

Living with advanced heart failure is difficult, and the medical decisions can be complicated. With shared decision-making, you can avoid heat-of-the-moment decisions and instead take time to figure out what’s best for you.