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End-Stage Heart Failure: What to Expect

If you or a loved one have heart failure, it’s important to plan for the future. By knowing what to expect, you’ll be able to make the best decisions about your care and ensure that your needs and wishes are met.

Treatments and lifestyle changes can help people live well with heart failure and delay its progression. Even in the final stages of heart failure, proper care can keep people comfortable and help them make the most of their remaining time.

What is End-Stage Heart Failure?

Heart failure is a gradual weakening of the heart, which prevents the heart from pumping as well as it should. Over time, the condition causes other damage to the body.

At first, the heart compensates for its weakness by changing: it may stretch, enlarge, and pump faster. The body also changes, narrowing blood vessels and diverting blood from certain organs. (As a result, many people are not even aware they have a problem during the early stages of heart failure.)

Despite these adjustments, heart failure will continue to worsen, and the body will eventually be unable to compensate for the lack of blood flow. At that point, the person may start experiencing fatigue, breathing difficulties, and other issues.

Various treatments can help people manage these symptoms and slow the disease’s progression. However, heart failure is a chronic condition with no cure. Over time, patients will reach the final stages of heart failure.

During these late stages, the person feels breathless even while resting. However, the severity of their symptoms can fluctuate over days or hours.

What are the Symptoms of End-Stage Heart Failure?

Heart Failure: Quick Facts

1. More than 6 million U.S. adults have heart failure.

2. About half of people who develop heart failure die within 5 years of diagnosis.

3. Most people with end-stage heart failure have a life expectancy of less than 1 year.

4. The leading causes of heart failure are diseases that damage the heart, such as heart disease, high blood pressure, and diabetes.

Sources: U.S. Centers for Disease Control and Prevention, American Heart Association, National Institutes of Health.

Heart failure worsens over time, so symptoms are most severe during the final stages. It causes fluid to build up in the body, which produces many of these symptoms:

  • Shortness of breath (dyspnea). In the final stages of heart failure, people feel breathless both during activity and at rest.
  • Persistent coughing or wheezing. This may produce white or pink mucus. The cough may be worse at night or when lying down.
  • Weight gain or swelling (edema) of the feet, ankles, legs, abdomen, or neck veins.
  • Tiredness, weakness.
  • Lack of appetite, nausea.
  • Thinking difficulties, confusion, memory loss, feelings of disorientation.
  • Increased heart rate, feeling like your heart is racing or throbbing.
  • Frequent urination.

In addition, people in the final stages of heart failure may suffer from:

  • depression, fear, insomnia, and isolation
  • anxiety about their future
  • trouble navigating the health care system

Treatment of End-Stage Heart Failure

Treatments, such as medications and healthier lifestyles, can help people with heart failure live longer, more active lives. Palliative care – which increases comfort and reduces symptoms – can be given alongside other medical treatments.

Some people with end-stage heart failure may also benefit from implanted devices that help the heart pump blood, or from a heart transplant. However, such invasive treatments also carry risks and potential downsides.

It’s important to understand your options – and to have conversations with your doctor and family about the types of care you want to receive. People with heart failure can have many choices to make, even during the final stages. Moreover, your physician or palliative-care provider can help you plan for potential health emergencies and make treatment decisions in advance instead of during a crisis.

When a patient has a life expectancy of six months or less, they become eligible for hospice care – a type of palliative care given at the end of life. Hospice provides extra support and services to help the person live comfortably and have the best possible quality of life. Hospice providers can also help the patient and family plan for future needs and possible scenarios. They have unique expertise in assisting people with these issues.


” Patients with heart failure can deteriorate quickly or die suddenly, so it’s important to discuss end-of-life issues early and often.” ~ Dr. Stephen Goldfine, Chief Medical Officer, Samaritan Healthcare & Hospice


When to Seek Hospice Care

Even physicians have difficulty determining life expectancy for people with end-stage heart-failure. The condition can be unpredictable, and symptoms can change. However, certain signs can indicate that hospice care would be beneficial, including:

  • frequent chest pain (angina)
  • abnormal heart rate
  • significant fatigue or shortness of breath
  • substantial decline in ability to do daily activities, such as self-care
  • The patient has already received the best possible treatment(s), which are no longer working well, and the patient is not a candidate for other interventions.
  • The patient has received the best possible treatment(s) and has decided to decline further specialized interventions.

People can be reluctant to start hospice, as they may worry it means they’re “giving up” or that it will hasten death. But such concerns are unfounded. In fact, patients and families often wish they had started hospice sooner, because it makes such a positive difference in their lives. And research shows that early admission to hospice results in greater satisfaction with care among patients and family caregivers.

How Palliative and Hospice Care Can Help with End-Stage Heart Failure

Both palliative and hospice care focus on the whole person, including their physical, emotional, social, and spiritual needs. The main difference is that palliative care can be given at any time during a serious illness, and hospice care is given near the end of life – typically when a person’s prognosis is six months or less. (Hospice is a form of palliative care.)

Palliative and hospice care can also provide help with making difficult treatment decisions, such as whether to be resuscitated if the person’s heart stops, or whether to have a tube placed in their throat to help them breathe.

Similarly, people with end-stage heart failure may need to decide when to disable certain medical devices implanted in their body:

  • Implantable cardioverter defibrillator (ICD). Patients can have the shock function turned off, or not replace the battery when the current one runs out. Electrical shocks from ICDs can cause unnecessary distress for patients and loved ones at the end of life.
  • Left ventricular assist device (LVAD). Typically, the patient decides when this heart pump will be shut off before it is implanted. The decision can be discussed again as the end of life nears. (Unlike with ICDs, LVAD discontinuation can cause rapid changes that can quickly lead to death.)

Learn more about hospice care here.


In addition, the palliative or hospice team can assist with navigating insurance issues, creating advance directives (such as a living will), and other practical matters. And they can support family caregivers through education, respite services, and grief counseling.

Palliative and hospice care can relieve suffering from heart-failure symptoms, including pain, breathlessness, depression, insomnia, and fear. This can be done through medication, therapies, counseling, and other supports. Hospice and palliative care can help a patient feel at peace, emotionally and spiritually. And hospice can enable a serene and dignified death.

The palliative or hospice team can include a physician, nurse, social worker, certified home health aide, spiritual support counselor, and trained volunteers. The team works with the patient and family to create a personalized care plan, based on the patient’s needs, goals, and preferences.

Hospice care is typically given where the patient lives – whether at home or in an assisted living facility or nursing home. Hospice can also be provided in a patient’s hospital room or in a dedicated hospice facility. A key benefit of hospice is that it often enables the person to die at home, which is the wish of most people.

People with end-stage heart failure and their families face a complex journey. But help is available so patients can get the right care at the right time, and live each day to its fullest potential.

 


If you live in South Jersey and have questions about
end-stage heart failure or hospice care for your loved one, please call Samaritan at (800) 229-8183.