For Your Patients: Planning Ahead With End-Stage Cardiomyopathy

Advanced, or end-stage, heart failure is the last stage of cardiomyopathy. Under the American Heart Association and American College of Cardiology classification, it's called Stage D heart failure when your condition no longer responds to medical and device treatments, thus requiring specialized interventions.

These may include:

• Heart transplantation
• Placement of a mechanical pump to assist the heart, known as a left ventricular assist device (LVAD)
• Continuous intravenous inotropic drugs, which can be an infusion administered at home, to help the heart muscle contract
• Palliative or hospice care, depending on your goals

Advance planning with your healthcare team may include discussion of your preferences and goals for what kind of life you want to live as your condition worsens.

Heart failure that has advanced to end-stage disease typically causes fatigue and shortness of breath, called dyspnea, that may interfere with daily life. Many patients also experience pain, nausea, anxiety, and depression.

Although determining how long you might expect to live with your condition can be challenging, most patients survive 6 to 12 months with Stage D heart failure. Some survive substantially longer. During this period, you may have cycles of exacerbation that requires hospital care and then remission as the disease gets somewhat better.

Supportive care focused on improving your quality of life through relief of stress and symptoms is important. Unlike palliative care for cancer, palliation in heart failure doesn't mean stopping therapy. Medication may be continued throughout the course of illness to maintain quality of life, regardless of its potential to prolong life.

Read previous installments in this series:

For Your Patients: Understanding Your Diagnosis of Cardiomyopathy

For Your Patients: What to Expect When Your Doctor Suspects Cardiomyopathy

For Your Patients: How to Prepare for Your Cardiomyopathy Appointment

For Your Patients: Should My Family Be Checked for Cardiomyopathy Too?

For Your Patients: Maximizing Your Wellness With Cardiomyopathy

For Your Patients: Coping With a Difficult Diagnosis

For Your Patients: Making the Most of Medication Therapy

For Your Patients: Knowing When to Seek Medical Care

For Your Patients: Understanding Cardiomyopathy Progression

"Medical Journeys" is a set of clinical resources reviewed by doctors, meant for physicians and other healthcare professionals as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.