Palliative care for liver diseases

Cirrhosis (scarring) of the liver is an incurable illness, but disease progression and life expectancy vary.

Many liver diseases ultimately lead to scarring of the liver, also known as cirrhosis. By the time symptoms appear, there’s only about 10 to 20 percent of functional liver tissue left. The rate at which cirrhosis of the liver progresses depends on many factors, and life expectancy varies. However, cirrhosis of the liver is an incurable illness.

Most common causes of cirrhosis of the liver include alcohol, certain viral infections, and being overweight. In many cases, years of strain on the liver lead to cells being replaced by scar tissue, causing the liver to shrink and harden. These changes are irreversible. How the situation progresses greatly depends on whether the cause of the damage can be removed. It’s essential to avoid all substances that burden the liver. For example, if cirrhosis of the liver is caused by alcohol abuse, being able to quit drinking may give the patient a life expectancy of several years, whereas continuing to drink might mean a life expectancy measured in weeks or months.

Important

You don’t have to cope with your symptoms alone

Be sure to tell your attending physician and members of the nursing staff about your symptoms. Good symptom management is a part of all stages of illness. Its purpose is to support you in making your life with a serious illness as good as possible.

Early symptoms include increased fatigue, loss of appetite, nausea, and decreased muscle strength. The patient becomes more susceptible to infections. The symptoms may be relieved by avoiding alcohol and medicines that impact the liver or affect blood clotting, and by maintaining a varied diet. Physical activity helps maintain muscle strength. It’s advisable to keep vaccinations up to date.

Build-up of fluid in the body

As cirrhosis of the liver advances, the body begins to retain fluid. This can be seen as swelling in the legs and feet, and as a swollen belly.

Excess fluid in the abdominal cavity is called ascites. It can accumulate in amounts measured in several litres. A large build-up of ascites can start to press on the diaphragm, leading to shortness of breath; it can also interfere with bowel function and reduce appetite. Ascites caused by cirrhosis can be treated with diuretics. If necessary, the fluid can also be removed by performing a puncture with a needle (“ascitic tap”).

Limiting salt consumption reduces the build-up of fluid. The accumulation of fluid is monitored with daily weigh-ins. As cirrhosis of the liver progresses, diuretics become less effective and less well tolerated. At this point, ascites is usually treated by performing an ascitic tap.

Risk of bleeding

Reduced blood clotting is accompanied by increased bruising. Enlarged veins (or “varices”) in the esophagus increase the risk of bleeding. As a result, medicines that increase the risk of bleeding, such as non-steroid anti-inflammatory drugs (NSAIDs), are prohibited.

Symptoms affecting the central nervous system and skin

Waste products that accumulate in the bloodstream cause disruptions in brain function. In mild cases, this can appear as changes in concentration, memory, or mood. Severe cases may even lead to a life-threatening coma. The entry of waste products into the bloodstream is reduced with lactulose, a medicine commonly used to treat constipation. It can also be used to reduce itching of the skin caused by the waste products.

Fatigue and loss of appetite

Late-stage cirrhosis of the liver or liver failure causes fatigue and loss of appetite. This also leads to malnutrition. When it comes to treatment for loss of appetite, it’s a good idea to have small, frequent portions according to the patient’s preferences. Ways to try and reduce fatigue include getting fresh air and appropriate physical activity. It’s also important to adhere to a regular sleep-wake cycle. At the end of life, the patient’s strength decreases, fatigue intensifies, and the need for sleep and rest increases.

Psychological strain

Having an illness puts strain on the mind too. Living with a long-term illness includes both good and bad moments. It’s good to talk to the care team about how you’re coping mentally. Depression and anxiety can be managed both by talking and with medication. Peer support may also be helpful.

Symptoms experienced by a palliative patient

Follow-up for cirrhosis of the liver often takes place in a health centre (especially if the symptoms are mild and there are no signs of progression) or in an internal medicine outpatient clinic (if the symptoms get worse or there are signs of problems affecting other organs). An ascitic tap can be performed in a hospital or by home hospital services.

Be sure to mention having cirrhosis of the liver when planning to start a new medication or preparing for a medical procedure.

In order to prepare for different scenarios, the attending physician makes a care plan in cooperation with the patient. When cirrhosis of the liver still responds to treatment, it’s advisable to contact the unit responsible for your care if your general condition worsens, you develop symptoms that interfere with your life, or your symptoms get worse.

While cirrhosis of the liver is being treated, help and support is available for symptom management as well. University hospitals, and some central hospitals, as well as cities and municipalities, have expertise in palliative care, including symptom relief and pain management. Psychosocial support and talk support is also available.

Provided that liver disease has not advanced to a stage in which the patient is receiving hospice care, the following symptoms require acute medical attention:

vomiting blood
black stools with blood
sudden yellowing of the skin and eyes
fever and stomach pain when the patient has ascites in the abdominal cavity
decreased consciousness and confusion

unless you and your doctor have previously made a different plan for such a situation.

At the very latest, when cirrhosis of the liver no longer responds favourably to treatment, every patient should be assigned a palliative care provider in charge of their care. No one should be left to cope with their illness alone.

At the end of life, the care provider in charge of the patient’s care is usually in primary care and located close to the patient’s home. This can be a palliative outpatient clinic, health centre, home hospital, home care or nursing service, or a hospice or hospice care ward. The important thing is to have a plan ready for where to get help at any time of the day or week.

At the end of life, going to the emergency department is a taxing experience. That’s why it’s preferably avoided by cooperating with the care team ahead of time to prepare a plan for what to do if the patient’s condition gets worse or if their symptoms change. Unless it’s an acute medical emergency, it’s advisable to contact the unit responsible for the patient’s care before visiting the emergency department. If the patient has pre-existing access to home hospital services, a nurse or doctor can visit the patient at home and assess the situation, if necessary, or make arrangements for transfer to inpatient care (support ward) without the need to visit the emergency department.

Palliative services

The role of liver function

The liver has many important duties. It processes the nutrients, medicines, and other substances absorbed into the bloodstream from the digestive tract. It removes bacteria and substances harmful to the body and prevents infections. It produces factors that participate in blood clotting, and proteins that are essential to the body. It serves as a storage unit for vitamins, minerals, fats, and glucose.

In addition to healthy liver tissue, the liver requires a steady flow of blood to function. Cirrhosis of the liver prevents blood from flowing properly through the scarred liver, increasing the pressure in other parts of the bloodstream. This leads to problems in the function of other internal organs. An enlarged spleen causes changes in blood cells. The kidneys are unable to maintain the fluid balance of the body, and the heart becomes weaker and can no longer pump blood effectively.

Most common symptoms