By Shamard Charles, MD, MPH
Medically reviewed by Richard N. Fogoros, MD
If you are living with heart failure that is no longer responding to conventional heart therapies and your symptoms are getting worse, you may have advanced heart disease.
About 6.2 million people are living with heart failure in the United States, and that number is expected to rise.1 Because improvements in the treatment of heart failure have allowed people with this condition to survive substantially longer than they used to, the number of people that reach an advanced phase of the disease—also called end-stage, refractory, or terminal heart failure—is steadily growing.
Heart failure is a slowly progressive condition that can be managed but not cured without getting a heart transplant. Fortunately, medical advances have improved the quality of life to such a degree that people can engage more fully in end-of-life decisions like palliative care.
This article discusses advanced-stage heart failure in detail.
Advanced Stages
In advanced heart failure, the heart no longer pumps enough blood, either because the heart cannot fill up with enough blood or can’t pump forcefully enough to meet the body’s needs. The heart still beats, but it is weak and damaged. Even more, the body is unable to compensate for the reduced blood the heart can pump. As a result, fluid often backs up into the lungs, liver, abdomen, or legs.2
The most common symptoms of advanced heart failure are shortness of breath and chest pain at rest, or with minimal exertion.
The New York Heart Association classification system is the simplest and most widely used method to gauge symptom severity.3
Class I
No limitations of physical activity
No heart failure symptoms
Class II
Mild limitation of physical activity
Heart failure symptoms with significant exertion; comfortable at rest or with mild activity
Class III
Marked limitation of physical activity
Heart failure symptoms with mild exertion; only comfortable at rest
Class IV
Discomfort with any activity
Heart failure symptoms occur at rest
Another classification system is the American Heart Association and American College of Cardiology’s A-to-D staging system. In this system, advanced heart failure is stage D.2
Stage A: You have been diagnosed with coronary artery disease, hypertension, or diabetes mellitus, but you have yet to develop left ventricular hypertrophy, distortion of the chamber, or impaired function on echocardiogram.
Stage B: You are asymptomatic but demonstrate left ventricular hypertrophy and/or impaired left ventricular function on echocardiogram.
Stage C: You have had symptoms of heart failure, but it is managed with standard treatment.
Stage D (advanced or refractory): You experience symptoms on minimal exertion or at rest in spite of optimal medical therapy and deteriorate clinically requiring repeated hospitalizations.
Heart failure is considered end-stage when life expectancy is predicted to be six months or less. Palliative or hospice care and novel research therapies are usually discussed during the final stage of heart failure.
Symptoms
Common symptoms of left-sided heart failure include:4
Chest pain
Fatigue
Weakness
Shortness of breath, especially on exertion
Orthopnea, or shortness of breath when lying down
Paroxysmal nocturnal dyspnea, or awakening at night with shortness of breath
Exercise intolerance
Fast or irregular heartbeat
Peripheral edema, or swelling of the feet, angle, legs
Weight gain
Nausea
Persistent coughing or wheezing
Having to urinate more than usual (polyuria) or at night (nocturia)
When the heart is weak, fluid builds up throughout the body, causing problems. Symptoms include swelling of the feet, legs, and/or belly and having more shortness of breath. You may also feel nauseous and lose your appetite. Other common signs of progressing illness are feeling dizzy or faint and cold hands and feet due to poor blood circulation.4
These common symptoms become worse as heart failure progresses and may look different at advanced stages.4
Shortness of Breath
A weak heart cannot pump blood forward so it backlogs into the lungs making it difficult to breathe. During advanced heart failure, you may experience shortness of breath, or dyspnea, even with minimal exertion.
This shortness of breath is likely due to fluid overload on and around the heart and may feel like suffocating, smothering, and hungering for air.
Edema
Severe heart failure can result in blood and fluid pooling in the legs and abdomen. The body can usually accommodate large increases in volume, about five liters, but in severe heart failure, the extra fluid is enough to expand the extracellular compartments of the body.
Swelling is usually most pronounced in the feet and ankles, but the development of ascites—fluid buildup around the liver and abdomen—has an especially poor prognosis.
Sudden Weight Gain
During heart failure exacerbations, it is not uncommon for the body to rapidly gain weight as a result of fluid retention, sometimes as high as five pounds or more in a day.5
Sleep Problems
In advanced heart failure, fluid accumulates in the lungs and more diuretic medicine is needed. Unfortunately, diuretic resistance develops in the final stages of heart failure as the body kicks fluid-retaining systems into high gear.
When you lie down, fluid accumulation in the lungs signals the body to wake up to prevent asphyxiation. This phenomenon is called paroxysmal nocturnal dyspnea. It is not uncommon for people to wake up multiple times in the night or find it hard to find a comfortable sleeping position.
Many people with heart failure also have sleep apnea, so they may misattribute their symptoms. If you have heart failure and are frequently waking up in the middle of the night, it may be a sign of worsening heart failure, so you should contact a healthcare provider immediately.
Coughing and Wheezing
Fluid in the lungs, or pulmonary edema, can cause coughing or wheezing. In more severe cases, these symptoms can resemble asthma, hence the going usage of the term cardiac asthma to describe these symptoms.
Symptoms of severe cough, wheezing, and spitting up pink-colored sputum should not be taken lightly, and you should contact a medical professional at the first sight of these symptoms.
Treatment
The acute onset of symptoms may mean you have a condition called acutely decompensated heart failure (ADHF)—which can occur at any stage of the disease. If your symptoms do not respond to changes in medications, it is a sign of advanced staged heart failure.
Many times symptoms of advanced heart failure respond to a course of treatment in the hospital and you feel much better upon discharge, but sadly some people do not improve to the point where they can go home on oral medications alone. This is due, in part, to the ineffectiveness of diuretics, a term called diuretic resistance—or decreased natriuresis and diuresis—as a result of the body’s overactivation of the SNS system—the part of the nervous system that increases heart rate, blood pressure, breathing rate, and pupil size—and the RAAS system, which regulates blood pressure.
Sometimes medications may work to some degree but make you feel worse. Decreased cardiac output worsens kidney function and activates the SNS and RAAS systems, enhancing sodium and water retention. Once-helpful diuretics can actually worsen heart failure by worsening the glomerular filtration rate of the kidneys and hyponatremia, or low sodium levels.
Diuretics may also instigate electrolyte abnormalities, further complicating treatment.
So what are the options at this point? You’ll likely need advanced treatments such as:
Constant intravenous (IV) medications: Continuous IV medications are used for those who are getting partial relief and desire a higher quality of life. They are often used as a bridge to transplant or palliative care. Also, most insurance companies cover this service, so it is widely available to those who cannot afford other end-of-life treatment options.
Mechanical circulatory support (partial or total artificial hearts): An intra-aortic balloon pump (IABP) or ventricular assist devices (VADs) can aid the heart in pumping and effectively delivering blood to the body, but they are mostly used as a bridge to recovery or heart transplantation. IABP has emerged as the single most effective and widely used circulatory assist device, but the invasive nature of the procedure needed to place the device comes with risks of thromboembolism, bleeding, and infection.
Heart transplant: Heart transplantation is the treatment of choice for people with heart failure refractory to medical therapy, but there are more people in need of a heart transplant than there are donors. According to the International Society for Heart and Lung Transplant, survival at one and three years for people who received cardiac transplantation was approximately 85% and 79%, respectively.1
Maintaining your heart failure self-care routine is vital to preserving and improving your quality of life no matter which treatment options you choose. This includes:6
Limiting your salt to 2,000 mg of sodium per day
Restricting fluids like water, sodas, coffee, and soups to help avoid fluid buildup
Keeping a log of your weight and symptoms, and knowing the side effect profile of new and current medications
Receiving vaccinations for pneumonia and influenza
Continuing to treat pre-existing health conditions like high blood pressure and diabetes
Prognosis
Heart failure is associated with very high morbidity and mortality. Eighty percent of men and 70% of women over the age of 65 who are diagnosed with heart failure will die within eight years.7
Stage D heart failure has a more grim prognosis. Despite improving special therapeutic interventions, the one‐year mortality rate of refractory heart failure is approximately 50%.8
The most common cause of death is progressive heart failure, but sudden death may account for up to 45% of all deaths. Also, Black people are 30% more likely to die of heart failure compared to White people, underscoring the health disparities that persist in the United States.9
Symptoms of advanced heart failure are manifestations of severely low cardiac output. The following signs may be indicative that someone is dying of heart failure, especially if frequent hospitalizations and specialized treatment regimens are not leading to clinical improvement:
Early satiety
Poor appetite
Abdominal pain
Nausea
Coughing up pink sputum
Renal insufficiency
Forgetfulness and memory problems
Coping
Heart failure can have a significant impact on your mental and emotional health. Feelings of anger, sadness, and fear are natural. Talking to your friends and family about how you are feeling, and seeking professional help if necessary, may help you to feel better and avoid heat-of-the-moment decisions that you may regret later.
The progression of heart failure can be unpredictable, which makes it difficult to know when to have conversations about end-of-life care. It’s important to discuss things as early as possible, giving people the time to think about treatment options and where they want to be cared for toward the end of their life. This may help them achieve some peace of mind and a sense of control.
While you have the final say on your treatment options and end-of-life care, shared decision-making that includes trusted healthcare professionals and your family means that you don’t have to make crucial decisions alone.
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