What to Expect With End-Stage Heart Failure

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End-stage heart failure is the most advanced stage of congestive heart failure. At this point, treatments don’t offer too much symptom relief.

There are four stages of heart failure. The first two stages—A and B—are considered pre-heart failure, where lifestyle changes and medications can largely keep the condition at bay. By stage C, you may have symptoms like swollen limbs, fatigue, and shortness of breath with physical activity.

By stage D, the heart has experienced significant damage, and it has begun to affect how other organs work, like the kidneys. Treatment for this stage includes surgery, heart transplant, or ventricular assist devices. You may also pursue hospice care—treatment based on comfort alone.

end of life heart failure

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Signs

Congestive heart failure is usually thought to be a condition of the heart, but it can affect other organs as it progresses. It continues to get worse with each flare-up, or exacerbation, and 90% of people with the condition eventually die of pump failure. This is when the heart can no longer function as a pump, and circulation of blood and oxygen through the body stops.

Symptoms of end-stage heart failure stem from this deterioration of the heart’s pumping power. As the heart grows weaker, it can’t pump enough blood to other parts of the body, and blood and fluids begin to back up.

Tissues and organs that don’t receive enough blood, oxygen, and nutrients fail to work effectively. The symptoms of end-stage heart failure are caused by the body’s attempt to compensate for a weakened heart.

Symptoms of end-stage heart failure are similar to those in stage C, only they are more severe. They may include:

  • Swelling and fluid collection under the skin
  • Shortness of breath, even at rest
  • Pulmonary edema, where excess fluid fills the lungs’ air sacs
  • Weakness and fatigue, especially with physical activities
  • Low blood pressure
  • Malnutrition, or failure of your body to absorb nutrients
  • Sudden weight gain
  • Increased nighttime urination

Coping

As your end-stage heart failure progresses, it will become more difficult to perform routine daily activities like bathing or walking through your house. You may require home care, a move to a skilled nursing facility, or frequent or continued hospitalization.

At advanced stages, you may need to be hospitalized for intravenous medications, oxygen therapy, or other treatments. If you don’t improve with hospitalization or need skilled nursing care, your medical team may recommend hospice or palliative care:

  • Palliative care: Contrary to what many people believe, palliative care is not necessarily end-of-life care. Palliative care focuses on relieving symptoms and discomfort caused by a chronic illness. Treatments continue with palliative care in many cases, but there is a greater focus on improving the quality of life. In people with heart failure, a palliative care visit during a hospital stay for heart failure was linked to decreased future hospital stays and intensive care unit admissions, and fewer aggressive treatments.
  • Hospice care: Hospice care also focuses on comfort and quality of life, but you also make the decision with hospice care to forgo additional invasive or lifesaving measures.

Prognosis

Only about half of the people who have heart failure that’s in stage C or beyond live for five years after their diagnosis. More than a third of people with advanced heart failure die within a year of being hospitalized.

People who receive heart transplants or a ventricular assist device, which can help the heart pump out blood as it grows weaker, have a better outlook. While life expectancy on a ventricular assist device is limited, people can often expect to live 10 years or more after a successful cardiac transplant procedure.

The American Heart Association (AHA) supports frequent conversations between you and your medical team in end-stage heart failure. Shared decision making is a partnership between you and your doctor where you openly and regularly discuss your condition, treatment options, and prognosis.

Heart Failure Doctor Discussion Guide

Doctor Discussion Guide Old Man

To help with the shared decision-making process, AHA offers the following checklist:

  • Annual review of your condition and progress, current treatment goals, and plans to address emergencies and worsening of your condition
  • Review of treatment goals after “milestone” acute events like a hospitalization, heart attack, or need for defibrillator shock
  • Open and honest conversations about the side effects and quality of life impact that different treatments or worsening of symptoms may cause
  • Discussions about the impact of your condition and treatment options on you and your caregivers or family
  • Palliative care alongside medical treatment to help manage symptoms
  • Hospice care or other end-of-life planning to make sure your wishes are met when your condition advances

What Does Moving to Hospice Care Involve?

If you and your family have made the decision to pursue hospice care while receiving inpatient care, a case manager or social worker can help facilitate the process. If you are at home and would like to transition to hospice care, hospice agencies can help make the arrangements. Hospice agencies will review your needs and have a doctor order the appropriate medications for you. These medications will focus not on treating your condition, but on managing your symptoms and comfort as much as possible.

Caregiver Support

Supporting and caring for family and friends with end-stage heart failure can be difficult. At advanced heart failure stages, a person with this condition will need help with their daily activities.

Coping with the demands of caregiving can be difficult. If you are a caregiver, enlist the help of others, and involve your own healthcare providers in creating a plan that keeps your health and well-being in mind. There are services that can offer respite care, or temporary medical care for the people you care for when you need a break.

Palliative and hospice care can help caregivers cope as their loved one’s condition deteriorates, and they can find ways to make them comfortable as much as possible. The American Heart Association also recommends that caregivers find support groups in their community or online.

Frequently Asked Questions

What is end-stage heart failure?

End-stage heart failure is the most advanced stage of heart failure. At this stage, medications and treatments can no longer improve the symptoms or prognosis. The focus of treatment at this stage will be to manage your symptoms as best as you can and prioritize comfort.

What are the signs of end-stage heart failure?

In end-stage heart failure, you may experience severe shortness of breath, swelling, and fatigue. It may become difficult to live independently and meet your own daily needs.

What should I expect at end-stage heart failure?

In end-stage heart failure, you may need frequent hospitalizations, and each acute event may make your condition worse. Your healthcare team may suggest skilled nursing, palliative, or hospice care to help you manage your condition.

How long can you live with end-stage heart failure?

Heart failure is a chronic, progressive condition that worsens with each flare-up. Your outlook and prognosis are better if you are healthy overall, you have been following your treatment plan, and you are responding well to your treatments. Being willing to pursue invasive treatments like a heart transplant will also increase your life expectancy.

Summary

End-stage heart failure is the most advanced form of heart failure, where your heart cannot pump blood effectively to meet your body’s needs. Treatments that have helped you manage earlier stages of the disease may not work anymore, and your healthcare provider will prioritize alleviating the discomfort of your symptoms. It’s still important to stay healthy because that could potentially improve your prognosis.

A Word From Verywell

End-stage heart failure is a very advanced level of a chronic disease. Early action is key to managing heart failure, but if it advances, you should make a plan with your doctor on how to cope with your condition and improve your comfort.

Discussions about when to move from aggressive action to care that is focused on palliative therapies and end-of-life care are appropriate in end-stage heart failure. It can help to make a plan and establish a support network as soon as possible for both you and your caregivers.

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