End Stage Heart Failure

Helpful Highlights

• Don't turn fear into frustration

• Recognizing end-stage heart failure and what to expect next

• Treatment for end-stage heart failure and alternative options

If your loved one has end-stage heart failure, it’s important to start planning if you haven't already. By knowing what to expect, together you can make the best decisions about ongoing care and ensure that your loved one's needs and wishes are respected. Even in the final stage of heart failure, care is available that can help keep your loved one (and you) calm and comfortable.

Tips for managing heart failure at end-of-life

It’s only natural that you, as a loved one and caregiver, want to be helpful in ensuring that your loved one is experiencing as little pain and discomfort as possible.

Communicate with healthcare professionals. Your loved one may be too weak or simply forget to communicate their symptoms. You can help by sharing this information with their providers to make sure your loved one gets what they need and what you know they want.

Provide comfort. Sometimes it's just as simple as being present. Spending time with your loved one while watching a TV show, or quietly rocking on the porch, or sitting with old photographs and talking about things they love. These moments can help alleviate depression and anxiety - for you both.

Help them remember to take their medicine. There will likely be various pills and medications that your loved one needs to take. You can help your loved one to stay organized and on schedule.

Don't turn fear into frustration. Recognize when your fear of your loved being in pain, or their passing, and a future without them is coming through as frustration taken out on them for not taking their medications on time, not eating enough (in your perception), or over-exerting themselves. Likewise, recognize when their same fear may be coming through toward you as irritability, demand, or withdrawal. Be silent, take some breaths, and find your understanding before interacting with them.

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. Heart failure is a chronic condition with no cure. It does progress and, over time, your loved one will reach the final stage (Stage IV or Stage D) of heart failure. During this late stage, the person feels breathless even while resting, though the severity of symptoms can fluctuate over hours or days.

What are the symptoms of end-stage heart failure?

Heart failure worsens over time, so symptoms are most severe during the final stage. You may hear providers use the word "refractory" regarding symptoms, which means resistant to treatment. Poor blood flow and fluid build-up in the body produce many of these symptoms:

• Shortness of breath even at rest, that becomes more persistent

• Persistent coughing or wheezing that is worse at night or when lying down

• Swelling (edema) of the lower legs, ankles, feet, abdomen, or face

• Enlarged neck veins (does not occur in everyone)

• Extreme tiredness, weakness

• Lack of appetite, nausea

• Cognitive difficulties such as difficulty concentrating, confusion, memory loss, and disorientation

• Persistent increased or irregular heart rate that can produce a throbbing feeling in the chest

• Frequent urination (peeing)

In addition, people in the final stage of heart failure may experience:

• Depression along with fear, insomnia, and isolation

• Anxiety about their future or dying

• Trouble navigating the healthcare system

Treatment of end-stage heart failure

It’s important to understand Stage IV/D treatment options and to have conversations with the providers and family about the ongoing care your loved one wants to receive. People with heart failure have many choices to make, even during the final stage and at the end of life. Their providers can help you both plan for potential health emergencies and make treatment decisions in advance - instead of during - a crisis.

Stage IV/D heart failure treatment may involve medications called inotropes or machinery like a ventricular assist device (VAD). Another option, though rare in the senior population, might be a heart transplant. There is also the option to stop aggressive treatment altogether.

Other Care Options

When your loved one has a life expectancy of 6 months or less, they become eligible for hospice care. Hospice care is provided at the end of life. Hospice does not remove medical treatment completely and it does not expedite death.

Hospice seeks to be palliative (symptom management and comfort care), not curative, and in the event of cardiac arrest, there is no resuscitation. Likewise, conditions that are not related to terminal illness are still treated, such as diabetes or a broken bone. Hospice providers have unique expertise in assisting people with end-of-life issues and planning.