Coping with Late Stage Heart Failure
Reviewed by: HU Medical Review Board | Last reviewed: November 2019 | Last updated: October 2021
Coping describes the tool we use to deal with and attempt to overcome problems and difficulties. Patients and caregivers alike may have begun the coping process at the time of their heart failure (HF) diagnosis. Getting used to life with HF may be difficult, but over time some of the concerns you initially experienced may subside as you learn more about the condition.1 Yet, these feelings of fear or uncertainty can recur as patients and families face late-stage heart failure.
The life-altering changes you have made to treat the early stages of HF may no longer be enough. The heart will get weaker over time and treatment can become more complex.2 Excellent medical and self-care cannot cure heart failure.3 The progression of heart failure is hard to predict and varies individually, but it will always progress. It is common for patients and their families to feel uncertain about what to expect in the final stages of HF.2-3
Late-stage heart failure
Late-stage heart failure is also known as end-stage heart failure, advanced heart failure, or refractory heart failure. According to The American College of Cardiology/American Heart Association (ACC/AHA) staging system labels advanced heart failure as Stage D.2,4 It describes refractory heart failure requiring specialized interventions. The New York Heart Association (NYHA) classification system based on function can fluctuate, but most with advanced heart failure have symptoms that occur even at rest along with the discomfort that accompanies any physical exertion or activity.
This last phase of heart failure accounts for only about 10 percent of people diagnosed with HF.2 The symptoms experienced at rest or with minimal exertion can include increased fatigue, dyspnea (shortness of breath), chronic coughing or wheezing, edema (swelling), nausea or lack of appetite, rapid heart rate, and sometimes confusion or impaired thinking due to a change in the balance of sodium levels in the blood.5
What to expect?
Advanced heart failure comes with more change and less predictability. The decline, which will lead to death, can be rapid but is often slow and can go on for years.1,4 People may experience worsening physical symptoms, increasing emotional symptoms, and sometimes cognitive change. Pain and depression are common in people with advanced HF. Up to 75 % of patients with advanced HF will experience pain.4 As you experience limitations and your functional status worsens, the incidence of depression goes up. Cognitive decline can interfere with memory, executive function and general thinking. It can cause confusion which can make caregiving more difficult.4
What can be done?
Advanced HF develops when standard therapies are no longer working. There are aggressive treatment options that may be available including surgery (LVAD and/or transplant) that you should discuss with your doctor to see if they are appropriate for you. When no further treatment options are available, you may be offered palliative care. Palliative medicine is a caregiving approach that aims to keep you comfortable and out of pain.
The AHA and other organizations have published recommendations to guide you through the decision-making process in advanced heart failure.2 Shared decision-making with your healthcare team in advance can provide helpful preparation and information.2 If you have had preliminary or regular conversations about treatment options for advancing heart failure, you may be better prepared to emotionally manage these changes.
End-of-life planning should ideally start before the end-of-life is near.4 Making decisions under stress can feel even more difficult. Understanding treatment goals and patient wishes can make this process a little easier.2
Your healthcare team, local hospital or community service organization, or even a house of worship may provide resources to guide you through this process. They can help to strengthen the support system that patients and families may both need during this phase. Anger, fear, anxiety, and depression can affect the whole family. Talk to your healthcare team about the different kinds of available support.1,3