Hospice For Heart Disease & End
If you are reading this, it is likely you or someone you love has been waging a difficult physical and emotional battle against heart failure or some form of heart disease. Your search for comfort, support and answers does not stop when you accept that you must learn to live with heart disease. Thats when VITAS can help.
Hospice helps patients and their families deal with the significant impact of heart disease after curative treatment has stopped. On this page, we’ve provided answers to these questions:
- When is the right time to ask about hospice?
- What can hospice do for a person with heart disease?
- What can hospice do for the family of a person with heart disease?
- What are the overall benefits of hospice care?
- How can I approach my hospice discussion with family members and loved ones?
Section I: Cancer Diagnoses
Note: Certain cancers with poor prognoses may be hospice eligible without fulfilling the other criteria in this section.
What Are The Symptoms Of End
Heart Failure: Quick Facts
1. More than 6 million U.S. adults have heart failure.
2. About half of people who develop heart failure die within 5 years of diagnosis.
3. Most people with end-stage heart failure have a life expectancy of less than 1 year.
4. The leading causes of heart failure are diseases that damage the heart, such as heart disease, high blood pressure, and diabetes.
Heart failure worsens over time, so symptoms are most severe during the final stages. It causes fluid to build up in the body, which produces many of these symptoms:
- Shortness of breath . In the final stages of heart failure, people feel breathless both during activity and at rest.
- Persistent coughing or wheezing. This may produce white or pink mucus. The cough may be worse at night or when lying down.
- Weight gain or swelling of the feet, ankles, legs, abdomen, or neck veins.
- Tiredness, weakness.
In addition, people in the final stages of heart failure may suffer from:
- depression, fear, insomnia, and isolation
- anxiety about their future
- trouble navigating the health care system
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Stages Or Classes Of Heart Failure
Your patient may have been told what stage or class their heart failure is at this explains how severe it is.
NYHA classification divides heart failure into four classes:
- Class 1: no limitation of physical activity. Ordinary physical activity does not cause undue fatigue, breathlessness, or palpitations.
- Class 2: slight limitation of physical activity. Comfortable at rest but ordinary physical activity results in undue breathlessness, fatigue, or palpitations.
- Class 3: marked limitation of physical activity. Comfortable at rest but less than ordinary physical activity results in undue breathlessness, fatigue, or palpitations.
- Class 4: unable to carry out any physical activity without discomfort. Symptoms at rest can be present. If any physical activity is undertaken discomfort is increased.
Patients with advanced heart failure will usually fit into class 3 and 4, despite the best specialist treatment. Read more about the definition of heart failure from NICE .
Nyha Functional Classification System
The New York Heart Association functional classification considers heart failure symptoms that happen during exercise to determine stage. Patients can go back and forth between stages depending on how well-controlled symptoms are on a given day.
- Stage 1: The person has heart disease, but it isnt yet causing symptoms or limiting activities.
- Stage 2: The person has mild symptoms that only slightly limit activity.
- Stage 3: The person has significant limitations to activities. He or she is only comfortable when resting.
- Stage 4: The person has major limitations and experiences symptoms when at rest.
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Talk To Them About Their Symptoms
People with heart failure may feel worried about their symptoms, treatment or risk of dying suddenly. Reassure them by talking openly and honestly about their concerns. Speak to their cardiac or palliative care team if you need support. If the patient has a plan for managing symptoms or emergencies, they may feel less anxious.
Outlook For Heart Failure
Heart failure is a serious long-term condition that will usually continue to get slowly worse over time.
It can severely limit the activities you’re able to do and is often eventually fatal.
But it’s very difficult to tell how the condition will progress on an individual basis.
It’s very unpredictable. Lots of people remain stable for many years, while in some cases it may get worse quickly.
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To Guide Shared Decision
- An annual heart failure review to discuss how well you are functioning, current treatment goals and your preferences for treating possible emergencies, such as kidney failure or sudden cardiac arrest.
- Milestone discussions to reassess treatment goals following a major event, such as a defibrillator shock, hospitalization or significant loss of function.
- Honest and thorough conversations about major side effects of treatment, quality of life, loss of independence, impact of worsening symptoms and increased commitment by caregivers and families.
- Considering palliative care, offered alongside medical treatment, to help manage symptoms and assist you and your family with tough decisions. Developing a care plan for the end of life that ensures your needs and wishes are met.
Living with advanced heart failure is difficult, and the medical decisions can be complicated. With shared decision-making, you can avoid heat-of-the-moment decisions and instead take time to figure out whats best for you.
Written by American Heart Association editorial staff and reviewed by science and medicine advisers. See our editorial policies and staff.
Last Reviewed: May 31, 2017
What Is Advanced Heart Failure
Of the more than 6 million Americans living with heart failure, about 10 percent have advanced heart failure. In short, that means conventional heart therapies and symptom management strategies are no longer working. Someone with advanced heart failure feels shortness of breath and other symptoms even at rest.
In the American Heart Association and American College of Cardiologys A-to-D staging system, advanced heart failure is stage D. Another classification system, developed by the New York Heart Association, grades the severity of symptoms on a 1-to-4 scale. Your symptom severity number can fluctuate, even within a single day, depending on how you feel.
In its early stages, medication and a healthy lifestyle can help manage heart failure. But as the disease progresses and the heart becomes weaker, treatment gets more complex. Thats the time to have difficult, yet important, conversations with your family and your doctor about the care you want to receive.
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Extreme Muscle Wasting And Weakness
Patients can live with liver cirrhosis for years. However, In the late stages of liver disease, the muscle mass and muscle power significantly decrease.
The degree of muscle wasting often reflects the severity of liver disease.
Before death, patients with end-stage liver disease experience profound muscle wasting .
Muscle wasting results in extreme weakness and fatigue. Patients with the end-stage liver disease before death are often unable to perform daily activities.
Support Them To Make Decisions About Treatments
As well as having an advance care plan, patients should be given the chance to discuss the following issues:
- Whether to deactivate an implantable cardioverter defibrillator , if they have one. This can prevent the ICD activating at the end of life, which can be distressing.
- What the patient would want to happen if they had a cardiac arrest. They may decide they do not want to have cardiopulmonary resuscitation .
- When to stop medication that no longer reduces symptoms or improves their quality of life. This can be a difficult conversation and it’s best carried out sooner rather than later. Make sure the patient and the people important to them understand what changes are being made to their medication and why.
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Imaging And Other Tests
Other tests provide pictures of the heart and surrounding structures or show how well the heart is working:
- Electrocardiogram : An electrocardiogram test uses small sensors to measure heart rate , rhythm and electrical impulses.
- Chest X-ray: A chest X-ray is a picture of your lungs, heart and surrounding structures. It can show whether there is fluid in your lungs from heart failure, or if your heart muscle is enlarged.
- Echocardiogram : Echocardiography uses sound waves to create images of your heart. It can show how thick the heart muscle has become, as well as measure ejection fraction.
- MRI: MRI is an advanced imaging test that takes pictures of the heart and surrounding structures. It helps determine your heart function and size and whether there are any changes in the heart muscle. A cardiac MRI may help your doctors identify causes of heart failure.
Treatments For Heart Failure
Treatment for heart failure usually aims to control the symptoms for as long as possible and slow down the progression of the condition.
How you’re treated will depend on what is causing your heart failure.
Common treatments include:
- lifestyle changes including eating a healthy diet, exercising regularly and stopping smoking
- medicine a range of medicines can help many people need to take 2 or 3 different types
- devices implanted in your chest these can help control your heart rhythm
- surgery such as a or a heart transplant
Treatment will usually be needed for life.
A cure may be possible when heart failure has a treatable cause. For example, if your heart valves are damaged, replacing or repairing them may cure the condition.
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Emotional Symptoms Towards The End Of Life
People with heart failure may experience different emotions and feelings. They may feel:
- up and down, with good days and bad days
- like they lack control over their life
- like it’s hard to cope with the reactions of others.
People may not think heart failure is as serious as other illnesses, such as cancer. Patients with heart failure can look well even when they feel very ill.
If a patient has anxiety or depression, their healthcare team will assess how it affects them and whether they need treatment, such as cognitive behavioural therapy or medication.
You can support the patient by providing emotional care and helping them with activities to make them feel better, such as reading, going outside and listening to music or audio books. Find out more about providing emotional care.
Caring For Someone With Heart Failure Towards The End Of Life
Please be aware – this information is for healthcare professionals.
You can use our My Learning form to reflect on how this page has helped with your continuing professional development.
If you’re a patient, or a family member or friend, you can find more information on heart failure from the British Heart Foundation .
Heart failure means the heart is not pumping blood around the body as well as it should. People with heart failure may have symptoms such as fatigue, breathlessness and oedema . Here, we’ll talk about knowing when a patient with heart failure is near the end of life, and how to support them.
This information is about supporting adults with advanced heart failure.
On this page:
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Causes Of Heart Failure
Heart failure is often the result of a number of problems affecting the heart at the same time.
Conditions that can lead to heart failure include:
- coronary heart disease where the arteries that supply blood to the heart become clogged up with fatty substances , which may cause angina or a heart attack
- high blood pressure this can put extra strain on the heart, which over time can lead to heart failure
- conditions affecting the heart muscle
- heart rhythm problems , such as atrial fibrillation
- damage or other problems with the heart valves
- congenital heart disease birth defects that affect the normal workings of the heart
Nausea And Vomiting In Heart Failure
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Loss of appetite and nausea are potential symptoms that people with heart failure experience. It can relate to a feeling of being full and having a bloated abdomen, despite not having eaten.
This may be caused by an accumulation of fluid around the digestive tract and slower stomach emptying in people with HF. In fact, one study found that bloating affects 25% of people with HF. Furthermore, 17% and 32% of people with HF experience nausea and vomiting respectively.1-2
The following article will outline treatments for nausea and vomiting. Before starting any of these treatments, it is very important that you speak to your doctor, as nausea and vomiting are sometimes indicative of worsening HF.
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Black Stools And Vomiting Of Blood
The liver receives blood from the gut tract, including the esophagus, stomach, and intestines.
Cirrhosis of the liver makes it harder for the liver to receive blood from the vessels supplying the walls of the esophagus and the stomach.
As a result, the pressure inside these vessels progressively increases, leading to dilation.
Eventually, these vessels often rupture and cause bleeding inside the esophagus and the stomach. The blood is either vomited or passes with stool as a black or tarry substance .
Hematemesis and melena are some of the symptoms of end-stage liver disease.
A significant portion of people dies after hematemesis or melenas first attack due to end-stage liver disease. One study estimated that 24% of patients die within six weeks of the first attack of hematemesis and melena.
So, bleeding varices are common symptoms of end-stage liver disease before death.
How Long Can You Live With End
Heart failure is a chronic, progressive condition that worsens with each flare-up. Your outlook and prognosis are better if you are healthy overall, you have been following your treatment plan, and you are responding well to your treatments. Being willing to pursue invasive treatments like a heart transplant will also increase your life expectancy.
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When To Call 911 For Heart Failure
- Chest discomfort or pain that lasts more than 15 minutes
- Severe or persistent shortness of breath
- Fainting or passing out
- A fast or irregular heartbeat, palpitations or a racing heart that does not go away
- A need to sleep sitting up on more pillows than usual
- Frothy or pink tinged sputum when coughing
When To Get Medical Advice
See a GP if you experience persistent or gradually worsening symptoms of heart failure.
Call 999 for an ambulance or go to your nearest A& E department as soon as possible if you have sudden or very severe symptoms.
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What Are The Symptoms
Some are easy to confuse with normal aging or other diseases. The more advanced your heart failure, the more likely you are to have many symptoms, or the changes that youâve noticed in yourself will worsen.
These are common ways that heart failure can affect you:
Shortness of breath. Heart failure can make it hard to breathe when you walk up a flight of stairs. With advanced heart failure, you may get winded in a shorter period of time, or you may have trouble even when youâre sitting still.
Sleep problems. Heart failure can make it hard to breathe or catch your breath when you lie in bed. You may have trouble nodding off to sleep, or you might wake up in the middle of the night gasping for air. Try sleeping while propped up on two or more pillows instead of lying flat. Advanced heart failure makes it even more likely youâll have trouble breathing when youâre at rest. That means your bedtime problems will probably get worse, too.
Coughing. You may already have a dry cough that acts up when youâre lying in bed. You might cough often during the day, and your phlegm could have a slight pink tint to it. That means thereâs a bit of blood in the gunk youâre coughing up. Advanced heart failure can make that cough worse, especially when youâre lying down.
Fatigue. Heart failure can make you feel worn out. Things that wouldnât have tired you out in the past suddenly do. Youâre more likely to feel tired all of the time with advanced heart failure.
Heart Disease And The Digestive System
Heart disease is still the leading cause of death in seniors, and a number of studies have shown that theres a strong correlation between the health of your heart and the health of your digestive system. That means that even though we often focus on heart health, its just as important that you know how to take care of your digestive system if you want to optimize your overall well-being.
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Worrying Sadness And Feeling Nervous
The MSAS-HF includes items assessing feelings of worry, sadness and nervousness. Half of the patients experienced worry. Importantly, worry was one of the most distressing symptoms experienced by heart failure patients. Although we did not ask the source of the worrying, it might be expected that these patients are worrying about their health and prognosis. It continues to be essential for hospice team members to offer support to patients who are likely to be worrying. In the outpatient setting, previous research has found significant sadness,3 and depression in heart failure patients.4 The role of these emotional issues should not be under-estimated hospice team members need to focus on these issues as they work to improve overall quality of life of heart failure patients.