Understanding Advanced Heart Failure: Symptoms, Causes, Treatment & Management

Advanced heart failure (also referred to as end-stage heart failure) is a type of heart failure in the final, most serious stage. Heart failure is a progressive condition that worsens over time, with the heart gradually pumping less and less blood, so symptoms will generally become more severe and persistent as the condition moves into this advanced stage. At this point, there is no cure for the condition, symptoms do not respond to conventional treatment and patients living with advanced heart failure must instead focus on management.

What Causes Advanced Heart Failure?

Heart failure is typically caused by other cardiovascular conditions, such as coronary artery disease (brought on by atherosclerosis in a coronary artery) and high blood pressure (hypertension). The American Heart Association estimates that roughly 10% of Americans living with heart failure—a number estimated to be over 6 million people—have had their condition progress into an advanced stage. Unfortunately, because heart failure is a progressive condition, it can’t be reversed or stopped entirely. Once someone is diagnosed with heart failure, it’s only a matter of time until the condition worsens and reaches its final stages. However, a person living with a lesser degree of heart failure can take steps to slow the progression in the meantime.

Delaying the Development of Advanced Heart Failure

For patients who have not yet reached an advanced stage of heart failure, maintaining consistent treatment, dietary choices and exercise can slow the progression of their heart failure and prolong their ability to live an active, healthy lifestyle. Patients can:

• Eat a well-balanced diet
• Exercise regularly, prioritizing cardio
• Monitor their progress with help from their physician
• Reduce their daily sodium intake
• Take prescribed medications

What are the Symptoms & Warning Signs of Advanced Heart Failure?

As heart failure progresses, existing symptoms will generally worsen and new symptoms may arise. The body won’t respond to treatments as well (if at all) when heart failure reaches an advanced stage. Furthermore, a person living with advanced heart failure may find it difficult to live a normal lifestyle without symptoms presenting during movement or even at rest.

Signs That You May Have Developed Advanced Heart Failure

One of the primary warning signs of advanced heart failure is when an individual’s exercise capacity has declined to a point where virtually any movement can cause the individual to become physically exhausted. They may no longer be able to walk around the block in their neighborhood, complete household chores, bathe and dress themselves or even rest without feeling symptomatic. Typically, patients will display the following symptoms:

• An increased or irregular heartbeat (many patients report feeling like their heart is racing or throbbing)
• Fatigue
• Lightheadedness
• Shortness of breath (dyspnea)

Additional Symptoms of Advanced Heart Failure

Someone with advanced heart failure may experience other symptoms such as:

• Abdominal pain
• Frequent urination
• Lack of appetite
• Nausea
• Persistent coughing or wheezing, which might be accompanied by the production of white or pink mucus
• Severe unexplained weight loss
• Swelling (edema) within the neck veins, abdomen, legs, ankles and feet
• Weakness

Diagnosis & Tests for Advanced Heart Failure

Once someone has been diagnosed with heart failure, his or her physician will monitor the condition and use this staging system to determine how quickly it’s progressing, whether it’s affecting other parts of the body, how it’s responding to certain treatments and what stage the patient’s heart failure is currently in. The United States American College of Cardiology/American Heart Association (ACC/AHA) staging system categorizes heart failure with an A-to-D staging system. The stages are organized as follows:

Stage A

In this stage, the patient is asymptomatic but faces a high risk of developing heart failure in the future due to factors such as:

• Coronary artery disease
• Diabetes
• Excessively drinking alcohol
• Genetic risk/family history of cardiomyopathy
• High blood pressure
• High cholesterol
• Lack of regular exercise
• Obesity
• Smoking

Because the patient has not yet developed symptoms of heart failure or another form of heart disease, this is when the condition can still be prevented. Physical activity does not cause the patient to exhibit symptoms of heart failure, and the patient is comfortable when resting.

Stage B

In this stage, which can be described as pre-heart failure, the patient is still asymptomatic but has developed a heart issue that has been detected through an echocardiogram test. This could mean that the heart has become structurally abnormal, is beginning to function improperly, or both. Physical activity is unlikely to cause symptoms, and none display while resting.

Stage C

In this stage, the patient has become symptomatic at some point—either currently showing signs and symptoms or having had them in the past. These can include:

• Coughing
• Fatigue
• Nausea
• Shortness of breath
• Swelling of the feet, ankles and legs

This is the stage in which most people who have the condition will see a physician and get tested, if they haven’t already been diagnosed at stage A or B. Treatments are effective at relieving the symptoms caused by stage C heart failure, though the condition cannot be fully stopped or reversed. Symptoms will not display while resting but may present during physical activity. Some patients may only experience symptoms when exercising or performing ordinary physical activity, while others may become symptomatic during light activity.

Stage D

In this stage, the patient’s condition has progressed to the point of advanced heart failure. It now presents a major obstacle in their daily life, as symptoms do not respond well to normal treatment methods and will affect the patient during any physical activity and in a resting state. The patient will have to consider more complex treatment options (including surgery) and faces a greater risk of frequent hospitalizations. This is the final stage of heart failure.

Testing for Advanced Heart Failure

Testing for advanced heart failure may include a cardiopulmonary exercise test, which can effectively help determine prognosis. In addition to performing physical examinations on a periodic basis, a physician may also order:

• Angiograms
• Blood tests
• Echocardiograms
• Electrocardiograms (ECGs)
• Magnetic resonance imaging (MRI) scans
• Positron emission tomography (PET) scans
• Sleep studies
• Stress tests
• X-rays

How Do You Treat Advanced Heart Failure?

When heart failure hasn’t yet progressed to stage D, it can be managed by taking medication and making certain lifestyle changes. However, once the condition has progressed to a more advanced stage, more complex therapies or surgical procedures will be required to relieve a patient’s symptoms and improve their quality of life. Recommended treatments may include:

• A heart transplant – While a heart transplant requires careful management after the procedure is completed, this method will improve or even eliminate heart failure symptoms.
• Cardiac resynchronization therapy (CRT) – A pacemaker can be effective for patients whose left and right heart chambers are not synchronized.
• Continuous intravenous (IV) inotropic therapy – Administering intravenous medications may improve the heart’s ability to pump blood and regulate blood pressure.
• Hospice care – If treatment methods are no longer effective, hospice care helps patients live as comfortably as possible with around-the-clock care and support for the family.
• Palliative care – Palliative care professionals can help with the decision-making process for further treatment, with emotional support, and with improving overall quality of life while managing advanced heart failure.
• The implantation of a ventricular assist device – Also called a mechanical heart pump, this device is effective at improving the heart’s pumping ability and relieving certain symptoms of advanced heart failure.

What Are the Complications Caused by Advanced Heart Failure?

Because advanced heart failure can cause fatigue and shortness of breath with little to no physical activity, patients dealing with this condition face a greater risk of developing other conditions related to the heart’s severely reduced function. These may include:

• Liver dysfunction
• Low blood pressure
• Pulmonary disease
• Reduced kidney function
• Cardiogenic shock

Those with advanced heart failure are also at greater risk of hospitalization due to complications related to the aforementioned conditions, or because their exercise capacity has diminished to a point where even moving around in their own homes can come with its own fall risks. Additionally, due to the heart’s inability to function properly, undergoing surgeries in other areas of the body can pose even greater risks than normal.

Living with Advanced Heart Failure

It won’t be possible to go back to one’s old lifestyle after a diagnosis of advanced heart failure. The focus will shift to treatments, condition management and planning for the future. But regardless of which treatment method is chosen, a person with advanced heart failure will need plenty of support from a team—not just physicians who can assist with shared decision-making responsibilities, but also family, friends and other caregivers who can help make day-to-day living easier.

Dealing with the Physical Effects of Advanced Heart Failure

Should a patient choose to undergo a major surgical treatment, they will likely have to make certain lifestyle changes as they recover from the procedure and/or manage their condition. After some procedures, such as a heart transplant, medication will be required to suppress certain side effects and help the body accept the treatment.

Patients should note that many procedures and therapies can come with side effects. These can be temporary, recurring or even permanent. Consulting with a physician before choosing to undergo any procedure or begin a temporary intervention will shed more light on these risks and help patients determine their best course of action.

Reducing Safety Hazards at Home

Living with advanced heart failure also increases the risk of falling at home. Steps should be taken to reduce or eliminate potential falling hazards within the household, such as:

• Adding small ramps to create smooth transitions between rooms or spaces with uneven heights
• Considering adding a chair lift to the staircase in a multi-story home
• Having a family member or caregiver in the home
• Installing a wheelchair ramp to make entering and exiting the home easier
• Installing grab bars, barrier-free showers and other safety-oriented bathroom upgrades
• Replacing the flooring with a non-slip material for better traction
• Removing floor mats and rugs from around the home

Dealing with the Mental Effects of Advanced Heart Failure

In addition to physical symptoms, individuals with advanced heart failure may also experience complex emotional challenges that can make decision-making difficult and worsen one’s quality of life. These may include:

• Anxiety or fear about the future
• Cognitive difficulties such as confusion, disorientation and memory loss
• Depression
• Feelings of isolation
• Insomnia

It is not unusual to feel any of these emotions after a diagnosis of advanced heart failure. This is, after all, a serious and irreversible condition, and you will have to make difficult decisions about impending medical issues and other future events that will occur. You should acknowledge your feelings to those in your support system—from your physician to your caregivers—so they can help you to understand what your path forward looks like. In addition, they can assist you when you have to process information and make decisions involving your health, your goals, your family and your plan in an advance directive.

Your physician can:

• Explain your options in detail and guide you to a clear understanding of each
• Help you find support through counseling, groups, large online networks or connections with patients who have undergone the procedure you’re interested in
• Prescribe you with medication to help alleviate issues such as depression
• Refer you to other specialists for additional insights and support

Palliative & Hospice Care for Advanced Heart Failure

It is important to note the differences between palliative and hospice care, which are two forms of treatment used by numerous patients with advanced heart failure. While they share some similarities, they are meant for separate end goals that not all patients share.

Palliative Care

Palliative care can be provided at any time and focuses on improving the patient’s quality of life while they receive other treatment for advanced heart failure. A patient’s palliative care team will assist them with a wide range of tasks and support services, such as:

• Advance directives
• Emotional support
• Insurance issues
• Pain and symptom management
• Post-procedure recovery
• Spiritual support
• Treatments

A palliative care team will also support the patient’s family and caregivers throughout the treatment process.

Hospice Care

Conversely, hospice care is meant for patients who have decided to stop undergoing treatment. These services are designed to ensure the patient can live comfortably in their home or at a hospice center with:

• 24-hour medical care
• Counseling services
• Physical therapy
• Art, music and other programs
• Personal health assistance (for eating, bathing and other needs)
• Assistance with legal documents, insurance and related issues

Hospice care also includes volunteer assistance with various tasks and support services, as well as help for caregivers and families in the forms of respite care and bereavement support.

Advanced Heart Failure: Frequently Asked Questions (FAQs)

Whether your heart failure has reached an advanced stage or you would like to learn more about this condition, see below for some frequently asked questions about this condition:

What causes advanced heart failure?

Heart failure itself is a chronic, progressive condition that can be treated, but can quickly get worse. Advanced heart failure occurs when one’s heart failure progresses to a point where traditional treatments are no longer effective.

What are signs of advanced heart failure?

The clearest indicator that heart failure has reached an advanced stage is when symptoms such as shortness of breath occur when the patient is resting and would otherwise be comfortable.

What are symptoms of advanced heart failure?

Symptoms include shortness of breath (dyspnea), fatigue and lightheadedness with little to no physical exertion, even in a resting state. Even basic household tasks can be physically exhausting for these patients. Anyone exhibiting these symptoms should speak to their medical care provider as soon as possible.

How is advanced heart failure diagnosed?

Patients are typically diagnosed with advanced heart failure when they exhibit the symptoms mentioned above and meet the criteria to be diagnosed with stage D heart failure. This is the final, most advanced stage of heart failure.

Can advanced heart failure be treated?

The condition can be managed with various treatment methods, but there is no cure for heart failure once it has progressed.

What is the best treatment for advanced heart failure?

There are several treatment options available to patients, but what’s “best” for one patient may not work for another. You may choose a surgical procedure or implant to better control your symptoms, or instead opt for hospice care. Your medical care provider will be able to help you identify and begin a treatment method that best aligns with your needs and preferences.

Nationally Recognized Treatment for Advanced Heart Failure at TGH

When a patient’s heart failure reaches an advanced stage, traditional treatment methods will no longer be effective. Patients will have to depend on alternative treatment methods—many of which are more complex and can require surgery—to manage their condition.

At Tampa General Hospital, the world-class heart and vascular specialists are uniquely positioned to care for and treat even the most complex advanced heart failure cases and related complications. Our Heart & Vascular Institute is recognized by U.S. News & World Report as One of the Nation’s Best Hospitals for Heart & Vascular Care, and “High Performing" for Heart Attack and Heart Failure, which ranks us in the top 10% of hospitals in the nation for 2024-25. Additionally, our Cardiogenic Shock Program—which was the first of its kind in Florida and fifth in country—assembles a multidisciplinary team of medical expert within minutes to quickly treat patients with cardiogenic shock, a condition when the heart can’t supply enough blood to the body to meet its needs. Cardiogenic shock is a rare but serious complication related to advanced heart failure.

Call us today at (813) 844-3900 to schedule an appointment with our Heart & Vascular team or email heart-vascular@tgh.org.