It is important to talk to your health care providers and your family about the kind of end-of-life care you want when you are being treated for heart failure.
CHF - palliative; Congestive heart failure - palliative; Cardiomyopathy - palliative; HF - palliative; Cardiac cachexia; End-of-life-heart failure
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.
You may have already discussed heart transplantation and the use of a ventricular assist device with your doctor.
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 providers 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.
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 provider will tell you how to take morphine.
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 person with heart failure to eat. This does not help the person live longer and may be uncomfortable.
Talk to your provider about things you can do to help manage nausea or vomiting and constipation.
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 provider before using any medicines, laxatives, or suppositories for these symptoms.
Goodlin SJ, Bonow RO. Care of patients with end-stage heart disease. In: Mann DL, Zipes DP, Libby P, Bonow RO, Braunwald E, eds. Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 10th ed. Philadelphia, PA: Elsevier Saunders; 2015:chap 31.
Yancy CW, Jessup M, Bozkurt B, et al. 2013 ACCF/AHA guideline for the management of heart failure: a report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines. Circulation. 2013;128(16):e240-e327. PMID: 23741058 www.ncbi.nlm.nih.gov/pubmed/23741058.