Heart failure affects over 5.7 million people in the United States and is a long-term progressive disease. Heart failure occurs when the heart muscle isn’t able to get oxygen-rich bloodout to the body. Symptoms include chronic cough, fatigue, swelling in the extremities, poor exercise tolerance, fast pulse, loss of appetite and shortness of breath. Treatments are aimed at decreasing the workload of the heart with diuretic medications, breathing medications, and healthy lifestyle changes.

When heart failure reaches the end stage, treatments tend to fail. Most people in early heart failure can manage their symptoms with lifestyle changes and medications. The symptoms become more severe in the advanced stages and is an important time to discuss end of life care. This article will explain more about this disease and ways of planning for care.

What Does End Stage Heart Failure Mean?

Yes, heart failure is a very serious illness and progressive. Yes, heart failure is a treatable condition and manageable. But if it’s “end stage”, it means that there is too much damage to the heart muscle and the patient is not a candidate for other options like heart transplant or ventricular assist device.

However, there have been patients that were diagnosed with end stage heart failure that have lived on for many years with good treatment. There are others who go through spells of good health and other times they are hospitalized with severe symptoms. Factors that can affect this are:

1)      Too much sodium in the diet

2)      Poor response to treatments

3)      Smoking, using alcohol, or other unhealthy lifestyle choices

4)      Congenital conditions that weaken the heart muscle

Classifications of Heart Failure and Symptoms

Since heart failure is a progressive long-term disease, it is classified by the amount of function the heart has left and the symptom level of the patient. Here is how they are grouped:

Class I

You can still tolerate a normal level of activity and exercise. There isn’t much shortness of breath or fatigue. The disease can easily be managed with medications, diet, and a healthy life style. At this point, doctors strongly urge patients to quit smoking and will be quite aggressive at treating high blood pressure.

Class II

At this level, there is slight activity intolerance and it is hard to climb stairs or walk briskly. Doctors usually start Beta Blockers or ACE inhibitors at this point to help regulate blood pressure, prevent arrhythmia, and increase the function of the heart.

Class III

This is where noticeable limitations on activity start. Any type of physical activity causes shortness of breath and fatigue, but not at rest. Dietary modifications are usually started such aslow-salt and low-cholesterol. Doctors usually begin using diuretics at this time to help pull extra fluid off the body. There may also be a need for oxygen and respiratory treatments.

Class IV

Symptoms can be severe even at rest. There are noticeable cardiac changes that are evidence the heart is in complete failure and even issues with the kidney function. This is “end stage heart failure,” and the point where doctors consider surgical options. Medications may cease to relieve symptoms.

End Stage Heart Failure Life Expectancy

Life expectancy for heart failure depends on when the diagnosis is made, when treatment is started, compliance to the treatment plan, and how the body reacts. There is no 'set' time limiton your life; just cherish every day as it is and do the best things possible. Some people are able to reverse heart failure and go on to live normal healthy lives. There is a high “sudden death rate” for patients who do not take anti-arrhythmic drugs, at about 50%. The good news is that patients who undergo heart transplantation have an 85% survival rate.

End Stage Heart Failure Life Treatment and Care

Final stage heart failure will have severe and multiple complaints that need aggressive treatment to ensure the most comfort possible. It is important for family members to be educated on the course of progression of the disease and how to handle emergencies.

The following are important things to help manage the condition at home:

• Pace activities throughout the day and encourage rest periods frequently
• Low-salt diet
• Fluid restriction as specified by the doctor
• Try to keep infection to a minimum. Discourage contact with respiratory illness.
• Elevate the head of the bed
• Place a fan in room to prevent air hunger

The doctor may suggest continuing or prescribe the following medications:

• Diuretic Medications (Help pull excess fluids out of the body)
• ACE Inhibitors (Dilate the blood vessels and increase flow of blood)
• Angiotensin Receptor Blockers (Relax and dilate blood vessels)
• Beta-Blockers (Help regulate heart rhythm and control blood pressure)
• Spironolactone (Reduce excess fluid, lower blood pressure)
• Oxygen (Helps raise oxygen levels in the body)
• Inotropes (Improve the pumping force of the heart)
• Oxygen (To provide extra oxygen to the blood via nasal cannula)
• Nebulizer Treatments (Inhaled medications to open up lungs)

Palliative Care at Home

As the end nears, you will notice a few changes in your loved one. Here are signs of imminent death from end stage heart failure:

• Withdrawal from interactions with others
• Weakness
• Loss of appetite
• Unconsciousness
• Low urine
• Breathing changes
• Extremities cool to touch

Make sure pain control is given and any treatments needed to increase comfort. Use swabs to moisten the inside of the mouth and keep the skin clean and dry. Reposition every two hours. Only offer food and fluids if they are awake and alert.

End of Life Decisions

There may be a few decisions related to care that you will need to make as the end nears. You will also need to decide if your loved one needs hospice care to help ease any discomforts. Here are a few decisions that need to be discussed:

Should the implantable defibrillator be turned off? An implantable defibrillator will continue to reset the heart rhythm with shocks even if the dying process has begun. This can actually cause discomfort and disrupt the natural process the body is going through. Ask about having the unit deactivated.

Should a mechanical heart pump be turned off? A “Left Ventricular Assist Device” will also help to prolong discomfort in the end. It would be very important to discuss whether the pump will be left on or turned off if the end is near.

What about hospice? Hospice can come in and help the patient of end stage heart failure and family deal with end of life care, decisions, and emotional support. There will be a team make up of doctors, nurses, therapy providers, and social workers. A care plan is developed to provide:

• Medical care and pain relief 24 hours daily on-call
• Counseling for patient and family
• Assistance with personal care
• Volunteers to help with duties around the house
• Help with funeral planning, legal issues, and insurance needs

Every agency is different and there could be many more services provided. When you decide on hospice, ask for a recommendation from your doctor and/or local hospital.