End-Stage Liver Disease: Symptoms Before Death

Chronic liver disease is the fifth leading cause of death in people between the ages of 45 and 64. End-stage liver disease affects around 5.5 million people in the United States.¹ Compared with other end-stage diseases, end-stage liver disease more commonly affects those in younger age groups. 

End-stage liver disease is the final stage of liver failure and typically comes with various symptoms and complications. Awareness of the signs and symptoms can help patients and their families plan what treatment or end-of-life care should be provided.

End-stage liver disease

End-stage liver disease is the final stage of liver failure. It is a terminal diagnosis, meaning that the disease leads to death.

In patients with end-stage liver disease, the damage to the liver is advanced. At this point, many liver cells have died, and the important structures of the liver are damaged beyond repair. This means that the liver cannot perform its functions, leading to severe symptoms. 

The term “end-stage liver disease” is often used to describe the following liver conditions:

• Decompensated (advanced) cirrhosis, which is when scar tissue replaces damaged tissue in the liver

• Stage 4 hepatitis

• Chronic liver failure

The final symptoms of end-stage liver disease

End-stage liver disease can cause numerous distressing symptoms, particularly in the last few months of a person’s life.

A small study on people with end-stage liver disease found that all participants experienced significant liver failure symptoms in the three months before they died.² It also found that they experienced an average of 14 major symptoms in their final month before death.

Some of the symptoms that people with end-stage liver disease experience in the final stages of their life include:

• Fatigue: People often experience severe fatigue, drowsiness, and weakness.

• Itching: People with liver failure may develop itchy skin, also known as pruritus. In some people, itchy skin occurs all over the body, while others experience it as concentrated in one or a few spots, often on the palms of the hands and soles of the feet. 

• Swelling: In the advanced stages of liver disease, people may develop swelling in the extremities — also known as peripheral edema. This happens when fluid is retained and builds up in the limbs, especially in the legs and feet. 

• Shortness of breath: People with end-stage liver disease may develop dyspnea, also known as shortness of breath. This can occur for a few different reasons, including changes in blood flow and increases in pressure due to fluid buildup. A person with shortness of breath may not be able to get enough oxygen into the blood in their lungs, leading to symptoms throughout the body.

• Jaundice: Jaundice is the yellowish discoloration of the skin and the whites of the eyes. This occurs due to a buildup of bilirubin, which is a toxin that is normally removed by a healthy liver.

• Neurological symptoms: Trouble concentrating, memory loss, and disorientation may occur, as toxins build up in the bloodstream and interfere with brain function.

• Nausea: This is also related to the buildup of toxins in the bloodstream.

• Loss of appetite: People in the final stages of liver disease may struggle to eat, leading to malnutrition. 

• Easy bleeding and bruising: This happens because the liver normally produces proteins needed for blood clotting. When the liver can’t make enough of these proteins, the blood’s ability to clot is impaired. 

• Sleep disturbances: People often experience insomnia at night and daytime sleepiness.

• Muscle cramps: Although these are very common in patients with end-stage liver disease, researchers are still not clear exactly what causes them.

• Changes in consciousness: When enough toxins build up in the bloodstream, this can impair brain function enough to send a person into a coma.

• Mental health problems: Mental health issues such as depression and anxiety are common in people with end-stage liver disease.

People with end-stage liver disease can also develop several complications. These also have recognizable symptoms, which can include:

Ascites

Ascites is a buildup of fluid in the abdomen. This is an uncomfortable complication of end-stage liver disease that can lead to symptoms such as swelling, bloating, and abdominal pain. It can also cause shortness of breath, as the pressure of the fluid in the abdomen makes it difficult for the lungs to expand.

Ascites is a serious complication of liver disease. Studies have found that around 50% of liver disease patients with ascites die within two years.

Hepatic encephalopathy

Hepatic encephalopathy, or brain damage related to liver disease, occurs when the buildup of toxins in the bloodstream interferes with brain function.

Most people who develop hepatic encephalopathy will survive for around 12 months. As patients with end-stage liver disease come closer to death, the risk of developing this complication may increase.

Hepatic encephalopathy can cause a range of symptoms, such as:

• sleep disturbances

• slurred speech

• asterixis, which can cause involuntary movements like trembling and ‘hand flapping’

• ataxia (poor balance and coordination) 

• confusion

• coma

• agitation

• disorientation

Hepatic encephalopathy can make the activities of day-to-day life difficult to carry out. Many people with this complication are unable to live independently.

Kidney failure

Kidney failure may occur in people with liver failure. In many cases, although kidney function is severely impaired, there is no physical damage to the kidneys themselves. Researchers are still unsure why this happens, but it may be due to changes in blood pressure and blood flow.  

Kidney failure occurs in around one in ten people who are hospitalized with liver failure.

Varices

Varices are dilated veins in the esophagus. They develop when scar tissue in the liver blocks blood flow in the digestive system. As the blood backs up, the veins in the esophagus swell. Without medical intervention, varices can rupture and bleed, which can be life-threatening.

Symptoms to look out for include vomiting blood, feeling lightheaded, or passing black and tarry stool (indicating that there is blood in the stool, which has been digested).

Infections

Certain infections, such as pneumonia or peritonitis (a serious infection of a membrane found in the abdomen), can occur due to end-stage liver disease. They may be a complication of ascites. These infections can impact survival from end-stage liver disease.

If you have liver disease, any signs of infection, such as a fever, should be taken seriously. It’s important to seek medical attention promptly if this occurs so that a doctor can provide appropriate treatment.

Is end-stage liver disease painful?

End-stage liver disease can have painful symptoms and negatively affect the patient’s quality of life.

One study found that 60% of people hospitalized with liver failure reported that they experienced pain. The pain caused by the liver disease may be felt in the upper right abdomen (where the liver is located) or in other parts of the body.

Treatments are available that can help to manage the pain and discomfort of end-stage liver disease. It’s important that the patient talks openly with their care team about any pain they’re experiencing — this will allow them to receive appropriate treatment.

The end-stage liver disease death process

End-stage liver disease is generally the last phase of a progressive illness that develops over many years. In many cases, patients have few or no symptoms related to liver damage for many years, and then symptoms can develop abruptly. It may be hard to cope with severe symptoms that come on suddenly.

End-stage liver disease can take anywhere from months to decades to develop. Death from liver failure can be sudden and unpredictable, although the dying process can also be slower.

There may also be times when the patient seems to recover but then worsens again.

Model for end-stage liver disease explained (MELD)

The model for end-stage liver disease (MELD) is a framework used to evaluate the severity of a patient’s liver disease. It helps assess how likely a person is to die from liver failure within three months.

The MELD score is used to prioritize patients for receiving a liver transplant. It’s also used to select other types of treatments for patients with liver failure.

The MELD process involves testing the blood for:

• Bilirubin, which helps to indicate how well the liver is able to clear certain waste products from the blood

• Creatinine, to assess whether kidney function has been affected by liver failure 

• International normalized ratio (INR), which assesses the blood’s ability to clot; certain proteins produced by the liver are needed for blood clotting

• Sodium, which indicates how well your body is able to regulate fluid balance

The results of the blood tests are entered into an algorithm to generate a score that ranges from 6–above 40. Lower scores indicate less severe disease.

The higher the MELD score, the worse the liver function is, and the greater the risk that the patient will die from liver failure.

Causes of end-stage liver disease

End-stage liver disease is most often caused by cirrhosis, a condition in which scar tissue forms throughout the liver.

Some of the causes of cirrhosis, which in turn may develop into end-stage liver disease, are:

• Alcoholic liver disease: Alcoholic liver disease is caused by the excessive intake of alcohol over a long period of time. When the liver metabolizes alcohol, compounds are created that cause damage to the liver cells.

• Viral hepatitis infections: Certain viruses, including hepatitis B and C, damage the liver by causing chronic inflammation, leading to cirrhosis.

• Non-alcoholic fatty liver disease: Non-alcoholic fatty liver disease (NAFLD), also known as non-alcoholic steatohepatitis (NASH), is associated with several lifestyle-related factors, such as obesity, insulin resistance, diabetes, and high levels of triglycerides in the blood. This condition causes too much fat to build up in the liver, which contributes to inflammation.

• Bile duct disorders: Problems with the bile ducts in the liver, such as primary biliary cirrhosis, can prevent bile from passing out of the liver and into the intestine. As the bile backs up, this leads to inflammation and liver damage.

• Autoimmune hepatitis: In autoimmune hepatitis, the patient’s own immune system attacks liver cells, causing inflammation in the liver.

Liver failure treatment

To prevent further damage to the liver, the underlying cause of the damage should be treated if possible.

This may include:

• abstaining from alcohol to treat alcoholic liver disease

• losing weight and making dietary changes to treat NASH

• treatments for viral hepatitis 

For end-stage liver failure, the treatment generally focuses on symptom management. For example:

• Beta blockers are medications that can reduce the chances of developing bleeding from varices.

• To help treat ascites (fluid buildup in the abdomen), there are several options, including taking diuretics, draining the fluid from the body using a needle inserted through the abdominal wall, or following a low-sodium diet.³

Pain management

Pain medications such as acetaminophen need to be carefully considered.¹ This is due to the potential toxicity of these medications to the liver, which can cause further harm.

Normally, the liver filters medications from the blood. However, this process is impaired or slowed in people with end-stage liver disease, causing higher levels to circulate in the bloodstream. This can make it more challenging to give pain medications to people with end-stage liver disease. 

However, it’s still possible to treat pain in these patients, and it’s important for them to tell their care team about any pain they’re experiencing so that they can get appropriate treatment to help keep them comfortable.

Can end-stage liver disease be reversed?

Currently, the only known way to reverse end-stage liver disease is by getting a liver transplant. However, it is difficult to get a liver transplant due to long waiting lists. There are simply more people who need livers than there are livers available. Unfortunately, this means that many people die before they have the chance to get one.

Can you survive with end-stage liver disease?

End-stage liver disease is often referred to as a terminal condition. Without a liver transplant, people with end-stage liver disease will generally die of liver failure. However, a liver transplant can allow people with this condition to survive, potentially for many years.

Caring for patients with end-stage liver disease

Palliative care is a type of medical care that focuses on relieving symptoms and improving patient comfort. This is a vital aspect of care for people with end-stage liver disease and has been recommended for everyone with the condition.

Palliative care can improve quality of life by:

• helping to manage physical symptoms, including itching, appetite, anxiety, fatigue, and depression. As end-stage liver disease progresses, the symptoms typically worsen, requiring more medical attention to address them.

• helping with the emotional distress often caused by end-stage liver disease. Patients often struggle to cope with the challenges of having end-stage liver disease. Waiting for a transplant can make life even more challenging, as patients can’t be sure whether they will die soon or be saved by a transplant. They need to prepare for death while also hoping for many more years of life.

It’s recommended that people with end-stage liver disease begin palliative care before they develop some of the late-stage complications of liver disease, such as hepatic encephalopathy.

The lowdown

End-stage liver disease is the final stage of liver disease. It can be fatal and causes a range of symptoms and complications. However, it is possible to improve the quality of life, and liver transplants can offer many more years of life.

If you are concerned about your liver function, it’s important to see a doctor as soon as possible to prevent the progression of your liver disease to liver failure and end-stage liver disease.

Frequently asked questions

What is considered an end-stage liver disease?

End-stage liver disease is the final stage of liver damage. It is the point at which the liver can no longer function properly.

Typically, in end-stage liver disease, there is cirrhosis (scar tissue throughout the liver). This leads to one or more complications, such as hepatic encephalopathy, jaundice, ascites, or variceal bleeding.

How long can you survive with end-stage liver disease?

A liver transplant can significantly improve the prognosis of end-stage liver disease.

Without treatment, the average survival time becomes shorter, but it’s hard to say exactly how long a person will survive with end-stage liver disease — this can vary based on the individual. However, those with complications of end-stage liver disease have a typical survival time of between 30 days and one year, depending on the patient.

Can liver failure cause sudden death?

For some people, death from liver failure can be sudden and unpredictable. Liver failure most often develops over many years, but it can sometimes occur suddenly.

Various factors, such as infections, bleeding, and kidney failure, can arise as complications of liver failure and lead to a faster death.

What are the complications of end-stage liver disease?

Some of the possible complications of end-stage liver disease are ascites (buildup of fluid in the abdomen), encephalopathy (disruption of brain function), portal hypertension (increased blood pressure in a vein leading to the liver), bleeding, kidney and lung failure, and infections.

If they aren’t treated rapidly, any of these complications have the potential to lead to death. 

What are the last days of liver failure like?

The final days of liver failure can vary, depending on the person. Someone may experience symptoms such as yellow skin and eyes, confusion, swelling, and general or localized pain. The symptoms of end-stage liver disease typically worsen as the patient becomes closer to death.