Congestive Heart Failure - What to Expect
Heart failure is often a progressive life-limiting illness. ‘Progressive’ means that it will get worse over time. ‘Life-limiting’ means that the disease will shorten life expectancy because of the illness.
There are many causes of heart failure, but the most common are hypertension, poor circulation to the heart (ischemia) and heart valve issues. Heart failure isn’t the same as a heart attack, but having one can cause or worsen heart failure. As a result of these causes, the heart has trouble functioning as a pump. The body suffers from bad circulation of blood and congestion of fluids can occur in the lungs and other parts of the body.
The amount of blood that the left side of the heart pumps out with each beat is called the ‘left ventricular ejection fraction’ or LVEF. Normally, the heart pumps more than 55% with each beat. The most common type of heart failure is when the heart pumps less than 40% with each beat.
If blood is not being pumped properly, a person can start feeling a number of symptoms like:
- confusion,
- fatigue,
- poor appetite,
- breathlessness and/or
- a cough.
With out the heart pumping properly, fluid starts to build up, and a person can start having symptoms such as breathlessness, enlarged stomach (called a distended belly or ascites), and/or swollen legs. Other symptoms of heart failure can include difficulty sleeping (inability to lie flat or wake up breathless), nausea, anorexia, depression and anxiety.
Generally speaking, people with heart failure experience the illness as one that ‘waxes and wanes.’ Sometimes people will have acute symptoms or a sudden decline, which they will recover from, but usually they won’t get back to the same health as they were before the decline or acute symptoms. In some situations, these crises can bring a person very close to death. Usually, people survive the crisis but they continue to decline gradually. People with heart failure are often ill for many years.
Many health care professionals are uncomfortable with estimating the prognosis, or how long a person will live with heart failure. This is because heart failure is quite unpredictable. Some people with their first episode of heart failure can be cured if the underlying cause is fixable. However, almost 50% of people will die from their heart failure within five - fifteen years after diagnosis. This is even higher for elderly patients, those that have other health conditions.
With each year that a person lives with heart failure, the survival rate gets lower. Seventy-five percent of people with heart failure do not live more than 10 years after being diagnosed. It’s also important to understand that people with heart failure are also at risk of sudden death.
There are treatments, like interventional therapies, self-care strategies, surgery, devices, that can extend the average life expectancy, however for many people, nothing cures their heart failure. Even heart transplantation isn’t a cure forever.
The medical team will try their hardest to get the patient on the right combination of medications to keep the heart failure stable and to improve quality of life. However, as the doses increase, they will need to watch carefully for side effects of the medications. It is a balance. The team will monitor things like echo-cardiograms, blood work (electrolytes and kidney function), vital signs, symptoms and overall functional heartiness to gauge where the person is at in their illness journey.
A patient can gauge where they are at in the journey by tracking how well they are holding up to treatment, the degree of their breathlessness and other symptoms like swollen legs, the need for more and more diuretics to keep the fluid balanced, how well they sleep flat or if their cardiac meds need to be decreased because of side effects. These are signs that the heart failure is worsening.
There are several factors that are signals of a shorter life expectancy:
- Repeated hospitalization for heart condition
- Treatments that don’t work for the person
- Persistent low blood pressure
- Decreased heart pumping strength (ejection fraction as discussed earlier)
- Heartbeat arrythmias (funny heart beats) that don’t respond to medication
- Anemia (low iron)
- Low sodium levels
- Significant weight loss
- Physical stamina and function that’s getting worse
- Orthopnea (breathless when lying down)
- Other medical problems (diabetes, depression, COPD, liver disease, stroke, cancer)
The illness trajectory of heart failure has been described in phases.
- Phase 1: when symptoms of heart failure start (or are noticed by the person) and when treatment starts
- Phase 2: when heart failure symptoms plateau for periods of time
- Phase 3: when the health of the person with heart failure declines over time, with some acute exacerbations (flare-ups) of heart failure that respond to treatment
- Phase 4: symptoms are worse, or even unmanageable, and physical function and abilities are limited
- Phase 5: end of life
A person with heart failure can experience various symptoms during their illness. These include breathlessness, low energy/fatigue, swelling that gets worse and anxiety. To help manage the heart failure symptoms, doctors and other healthcare professionals will prescribe medication and other treatments to control the baseline symptoms. However, the natural course of heart failure means that patients will have recurrent episodes of rapid deterioration. In the first few years, the episodes may be more spread out over time. During these episodes, symptoms are worse than they are everyday and the person’s ability to function physically is very low. If a person gets better from these ‘flare ups’, they don’t usually get back to their old self. It’s common for people to be admitted to hospital during some of these exacerbations.
happening closer together. As more episodes happen, the person’s ability to recover well gets less and less, and they will lose more physical function in their everyday life. Patients usually take medication throughout the illness to help the heart function. The cornerstone of treatment is getting the best fluid balance to keep the heart as well as possible. When there’s too much fluid, the doctor or healthcare professional will add more diuretics.
As heart failure worsens, the medications are fine-tuned. Some are lowered if they are no longer working or tolerated by the person, while other medications are increased. The goal is to help the person live as well as possible for as long as possible.
There comes a time in advanced stage of heart failure that despite the best management of the heart condition, a person continues to have symptoms even between the flare-ups. Every effort is made to control the symptoms along the journey. There are medications that are only for symptom management.
A person’s experience of heart failure can be improved by using self-management strategies, which are behavioural and life-style changes. Self-management includes using medications as prescribed and exercising on a regular basis. A patient with heart failure is usually on a low sodium diet and fluid restriction. Patients are usually asked to weigh themselves daily and learn to use their weight (which is an indication of fluid accumulation) to monitor for early symptoms of heart failure exacerbation. When a person’s weight goes up it is an early signs of heart failure, and the person is instructed to take extra doses of their diuretic and call their doctor. Early intervention can help avoid an ER visit or an admission to hospital.
The heart failure illness pattern is like a seesaw – it goes up and down. However, overall, the person’s health will decline over time. At first, the person seems to be deteriorating from year to year. Then this will speed up and the decline is noticeable from month to month, then week to week. The decline comes in the form of weakness, fatigue, loss of appetite, less energy and more breathlessness. Oxygen and medications like morphine can be used for comfort from breathlessness.
Because of the seesaw nature of heart failure, caregivers and family can feel anxious and unprepared. This is why it is important for caregivers to know what to expect with heart failure and what the journey looks like. The person with heart failure will have medical appointments and need more support over time. Along with emotional and spiritual support, a person will eventually require personal/physical support for their basic activities of living like dressing, bathing, toileting. Eventually, people with heart failure ‘take to bed’ more and more. This is normal. In the very advanced stage, people spend all of their time in bed.
Caring for someone with heart failure takes a team approach. This includes the primary (family) doctor, cardiologist, home-based team, other specialists including a palliative care team. The teams will work together and have different roles along the illness and depending on the care setting at the time (i.e hospital, home or hospice).
There are many decisions that need to be made along the journey of heart failure. Due to the sometimes-rapid deterioration, there is a need for patients and families to have advance care discussions about what is important to them. In order to make truly ‘informed decisions’ about lifestyle and treatments it is important for people with heart failure to ask their doctor or other members of their healthcare team at different points of their illness to truly understand where they are at in the phases of the illness. This ‘big-picture’ will help with immediate and long-term decisions.
Big picture discussions should start right after diagnosis, signs of illness progression, starting new treatments, hospitalizations, ER visits, refractory symptoms, worsening quality of life, increased diuretics, being in/out of hospital, less stamina for everyday life, lack of understanding, not sure what to expect, scared or anxious or not sleeping.
It is important for patients and families to have awareness and understanding of the diagnosis, know the expected disease pattern, how this will impact quality of life and life expectancy over time, how to use self-management strategies and who to call for what.
Over time, a person with heart failure becomes increasingly fatigued and they will have an overall functional decline. It will become harder and harder for them to get out and about and eventually they will be unable to go to doctor appointments or clinic visits. Assessing a person’s individual prognosis is tricky, but it can be helpful to look for the rate at which a person’s decline is noticeable. If you notice you are declining consistently from month to month, then the timeline may be measured in months. If the decline is happening weekly, then the prognosis may be measured in a number of weeks.
Patients with advancing heart failure are often scared about the future and are waiting for their trusted care team to help them understand the natural history of their illness. They worry most about pain and suffocation. It is often a relief for them to learn that pain isn’t a common symptom associated with the decline from heart failure. Although breathlessness usually worsens, there are excellent medications and non-medical treatments to relieve this symptom to help the person’s quality of life.
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