Chronic heart failure becomes worse over time. Many people who have heart failure will die of the condition. Thinking about the type of care you may want at the end of life and discussing these issues with loved ones and your health care provider can be difficult. Yet, for many people, dealing with these hard issues can also bring peace of mind.
At a certain point, the decision needs be made about whether continued active or aggressive treatment of heart failure is the best choice. The patient, family and loved ones, and health care providers may want to discuss the option of palliative or comfort care at this time.
Where you will live is a key issue. Many people wish to stay in their home during the end of life period. With the support of loved ones, caregivers, and a hospice program, this is often possible. Changes in the home to make life easier and keep you safe are often needed. Hospice units in hospitals and other nursing facilities are also an option.
Advance care directives allow patients to provide instructions about their preferences for the care they would like to receive if they are unable to express what they want.
Cardiac cachexia; End-of-life-heart failure
Fatigue and Breathlessness
Fatigue and breathlessness are common and distressing problems at the end of life.
The patient may feel short of breath and have trouble breathing. Other symptoms may include tightness in the chest, feeling as if they are not getting enough air, or even a feeling of smothering or suffocation.
Family or caregivers can help by encouraging the patient to sit upright, increasing the airflow in a room by using a fan or open window, and knowing how to help the patient relax when they begin to panic.
Morphine can often help shortness of breath. The patient may take pills, liquid, or tablets that dissolve under the tongue. A health care provider will prescribe a regular schedule for taking morphine, as well as how to take a little extra when symptoms get worse.
Eating and Digestive Symptoms
Symptoms of fatigue, shortness of breath, loss of appetite, and nausea make it difficult for patients to take in enough calories and nutrients. Wasting of muscles and weight loss are part of the natural disease process.
Small, frequent meals, using appealing food that can be easily digested, can help. It is important for caregivers to be realistic about the patient maintaining weight. Forcing the patient to eat food does not extend survival and can cause discomfort.
Anxiety, fear, and sadness are common, expected symptoms for people with end-stage heart failure.
Family and caregivers should look for signs of these problems and make it easy and comfortable to discuss. Making a point of asking about feelings and fears can make it easier for the patient to discuss.
Morphine used for shortness of breath and pain may also help with fearfulness and anxiety. Certain antidepressants may also be useful.
Pain is a very common problem in the terminal stages of many diseases, including heart failure. Stretching of the sac or capsule that surrounds the liver is one cause. Morphine and other pain medicines can help. Common over-the-counter pain medicines such as ibuprofen are often not safe for those with heart failure.
Problems controlling bladder or bowel function may be present in some people. Talk with your health care provider 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, Assistant Professor of Medicine, Division of Cardiology, Harborview Medical Center, University of Washington Medical School, Seattle, Washington. Also David Zieve, MD, MHA, Medical Director, A.D.A.M., Inc.