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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.
End-stage heart failure, also known as Stage 4 heart failure, is the most advanced form of heart failure. It occurs when the heart’s ability to pump blood is so severely compromised that even basic functions become difficult, and symptoms are present even during rest. At this point, the body can no longer compensate for the heart’s declining function, and the condition significantly impacts daily life and overall well-being. The severity of symptoms can fluctuate over days or hours.
Heart failure itself 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, leading to a range of complications.
In the earlier stages, 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. At which point hospice care may be an option.
Heart Failure: Quick Facts
1. More than 6 million U.S. adults have heart failure.
a. In 2020, deaths per 100,000 population in New Jersey was 166.
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:
In addition, people in Stage 4 heart failure may suffer from:
Heart failure can affect either the right side, the left side, or both sides of the heart. Understanding the difference between right-sided and left-sided heart failure can help you recognize symptoms and make informed care decisions.
Left-sided heart failure happens when the left ventricle can no longer pump blood efficiently to the rest of the body. As a result, blood backs up into the lungs, causing breathing issues and fatigue.
Common Symptoms of Left-Sided Heart Failure:
Left-sided heart failure often worsens gradually and may lead to right-sided heart failure over time.
Right-sided heart failure means the right ventricle is not pumping blood effectively to the lungs. This causes blood and fluid to back up in the body’s veins and tissues.
Common Symptoms of Right-Sided Heart Failure:
Right-sided heart failure is often a result of worsening left-sided heart failure, but it can also occur on its own due to conditions like lung disease or pulmonary hypertension.
Treatments, such as medications and healthier lifestyles, can help those with heart failure live longer, more active lives. Palliative care – which increases comfort and reduces symptoms – can be given alongside other medical treatments.
Some South Jersey residents 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.
Samaritan is the first and still largest provider in South Jersey, and also administers palliative care. Learn more about the options available to you.
Even physicians have difficulty determining life expectancy for people with end-stage heart-failure. The condition can be unpredictable, and symptoms can change. However, there are several clear indicators that a patient may be entering the end stage of the disease—signs that it may be time to consider the added comfort and support of hospice care.
Key signs of end-stage heart failure include:
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, we’ve found that our South Jersey 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.
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:
In addition, the palliative or hospice team in South Jersey 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, trained volunteers, bereavement support, and complementary therapies such as massage. 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 or a loved one are living with CHF in the Southern New Jersey area, learn about Samaritan’s CHF Disease Management Program that helps patients manage heart failure in primary care, palliative care, and hospice care to address end-stage CHF.
Acute decompensated heart failure (ADHF) is a sudden worsening of the symptoms of heart failure, typically resulting in an urgent need for medical care. It occurs when the heart is no longer able to pump blood efficiently, causing a buildup of fluid in the lungs and other parts of the body. ADHF is often triggered by a change in medication, uncontrolled high blood pressure, arrhythmias, or other underlying conditions. It is a serious condition that may require hospitalization and aggressive treatment.
Congestive heart failure (CHF) is caused by conditions that weaken or damage the heart muscle, making it difficult for the heart to pump blood effectively. Common causes include:
The life expectancy of someone with congestive heart failure varies depending on factors like age, overall health, the severity of the condition, and how well it is managed. With proper treatment, many people live for years with heart failure, and some can lead relatively active lives. Generally, the earlier heart failure is diagnosed and treated, the better the outcome.
Yes, heart failure is treatable, but not usually curable. The goal of treatment is to manage symptoms, slow progression, improve quality of life, and reduce the risk of complications.
In most cases, heart failure cannot be fully reversed. However, some causes of heart failure are reversible or manageable if identified early.