Chronic heart failure very often gets worse over time. Many people who have heart failure die of the condition. It can be hard to think and talk about the type of care you want at the end of your life. However, discussing these subjects with your doctors and loved ones may help bring you peace of mind.
At some point, you will be faced with the decision about whether to continue active or aggressive treatment of heart failure. Then, you may want to discuss the option of palliative or comfort care with your doctors and loved ones.
Many people wish to stay in their homes during the end of life period. This is often possible with the support of loved ones, caregivers, and a hospice program. You may need to make changes in your home to make life easier and keep you safe. Hospice units in hospitals and other nursing facilities are also an option.
Advance care directives are documents that state the type of care you would like to have if you are unable to speak for yourself.
Cardiac cachexia; End-of-life-heart failure
Fatigue and breathlessness
Fatigue and breathlessness are common problems at the end of life. These symptoms can be distressing.
You may feel short of breath and have trouble breathing. Other symptoms may include tightness in the chest, feeling as if you are not getting enough air, or even feeling like you're being smothered.
Family or caregivers can help by:
Encouraging the person to sit upright
Increasing the airflow in a room by using a fan or opening a window
Helping the person relax and not panic
Using oxygen will help you combat shortness of breath and keep a person with end-stage heart failure comfortable. Safety measures (such as not smoking) are very important when using oxygen at home.
Morphine can also help shortness of breath. It is available as a pill, liquid, or tablet that dissolves under the tongue. Your doctor will tell you how to take morphine.
Eating and digestive symptoms
Symptoms of fatigue, shortness of breath, loss of appetite, and nausea can make it hard for people with heart failure to take in enough calories and nutrients. Wasting of muscles and weight loss are part of the natural disease process.
It can help to eat several small meals. Choosing foods that are appealing and easy to digest can make it easier to eat.
Caregivers should not try to force a heart failure patient to eat. This does not help the person live longer and may be uncomfortable.
Anxiety, fear, and sadness are common among people with end-stage heart failure.
Family and caregivers should look for signs of these problems. Asking the person about his or her feelings and fears can make it easier to discuss them.
Morphine can also help with fearfulness and anxiety. Certain antidepressants may also be useful.
Pain is a common problem in the end stages of many diseases, including heart failure. Morphine and other pain medicines can help. Common over-the-counter pain medicines, such as ibuprofen, are often not safe for people with heart failure.
Some people may have problems with bladder control or bowel function. Talk with your doctor before using any medicines, laxatives, or suppositories for these symptoms.
Emanuel LL, Bonow RO. Care of patients with end-stage heart disease. In: Bonow RO, Mann DL, Zipes DP, Libby P, eds. Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 9th ed. Philadelphia, Pa: Saunders Elsevier; 2011:chap 34.
Goodlin SJ. Palliative Care in Congestive Heart Failure. J. Am. Coll. Cardiol. 2009;54;386-396.
Michael A. Chen, MD, PhD, Associate Professor of Medicine, Division of Cardiology, Harborview Medical Center, University of Washington Medical School, Seattle, Washington Also reviewed by David Zieve, MD, MHA, Bethanne Black, and the A.D.A.M. Editorial team.