Liver Disease and End-of-Life Care: Hospice for Cirrhosis

When the doctor tells you that your loved one has cirrhosis, the word itself sounds scary. When they say the liver is failing and there is no cure, you may not know what to do next. You want to know how to help. You want to understand when it might be time to think about hospice care.

Liver disease is different from some other illnesses. It moves slowly for a long time, then sometimes speeds up quickly. Your loved one may have good days and bad days. They may look okay one week and very sick the next. This up and down pattern makes it hard to know when the end is getting close. But there are signs. And there is help.

What Cirrhosis Does to the Body

The liver is a vital organ. It cleans the blood. It makes proteins the body needs. It stores energy. It helps with digestion. When cirrhosis sets in, scar tissue slowly replaces healthy liver tissue. The liver cannot do its jobs as well. Over time, it cannot do them at all.

Many things can cause cirrhosis. Years of heavy drinking is one common cause. Hepatitis C is another. Fatty liver disease from diabetes or obesity can lead to it. No matter what caused it, once the liver has too much scar tissue, the damage cannot be undone.

Your loved one may have lived with cirrhosis for years before it became serious. In the early stages, they may have felt tired or had some discomfort. But as the disease gets worse, the symptoms become harder to ignore and harder to manage.

Signs That the Liver Is Failing

As cirrhosis moves to end stage liver disease, certain problems start to show up. The skin and eyes turn yellow. This is called jaundice. It happens because the liver can no longer clear a substance called bilirubin from the blood.

Fluid builds up in the belly. This is called ascites. The belly swells and gets tight. It can be hard to breathe when the belly presses up on the lungs. The legs and feet may swell too.

Bleeding becomes a problem. The liver makes factors that help blood clot. When it fails, bleeding can happen easily. Your loved one may bruise from the smallest bump. They may have bloody stools or vomit blood. This is very scary to see.

Confusion sets in. This is called hepatic encephalopathy. Toxins that the liver should be cleaning out stay in the blood and affect the brain. Your loved one may seem foggy. They may not know what day it is. They may say things that do not make sense. In the worst cases, they may slip into a coma.

Pain is common. The swollen belly hurts. Muscle cramps come and go. The whole body may ache. Sleep becomes hard because of the discomfort.

When Transplant Is Not an Option

For some people with end stage liver disease, a liver transplant can save their life. A new liver can give them many more years. But transplant is not possible for most people. The wait list is very long. Many do not live long enough to get a new liver. Others are not healthy enough for the surgery. Some have other health problems that make them ineligible.

If your loved one is not waiting for a transplant, or if they have decided they do not want one, then the focus shifts. The goal is no longer to cure the liver disease. The goal becomes keeping them comfortable. This is where hospice care can help.

What Hospice Offers for Liver Disease

Hospice is for people who have six months or less to live if the disease runs its normal course. Doctors use scoring systems to help figure out how far along the liver disease is. A high score on these tests suggests that time is short. But even with the tests, it can be hard to predict exactly. Some people live longer than six months on hospice. That is okay. As long as the disease keeps progressing, your loved one can continue to receive hospice services.

Hospice does not try to fix the liver. Instead, it focuses on comfort. A hospice nurse comes to your home regularly. They check on your loved one. They make sure pain is under control. They watch for new problems and adjust the care plan.

Managing the fluid buildup is a big part of care. Medicine can help reduce the swelling in the belly and legs. Sometimes a doctor needs to drain the fluid with a needle to give relief. The hospice team can arrange this.

Confusion from the toxins in the blood can be eased with medicine that helps clear some of the toxins. The hospice team knows which medicines are safe for a failing liver and which ones are not. They adjust doses carefully.

Pain is managed with medicines that work even when the liver is not working well. Some pain drugs are hard on the liver, so the hospice team avoids those. They find options that bring relief without causing more harm.

Itching is a problem many people with liver disease face. The skin feels crawly and uncomfortable all the time. The hospice team has treatments that can help ease this symptom.

Nausea and loss of appetite are common. Your loved one may not want to eat. They may feel sick to their stomach. The hospice team may provide medicine to settle the stomach and ease the nausea.

Support for the Whole Family

Liver disease affects everyone in the family. If your loved one drank heavily for years, there may be old anger or hurt feelings in the family. If the disease came from hepatitis or another cause, there may be fear or guilt. A hospice social worker or spiritual care coordinator can help sort through these feelings.

Caring for someone with end stage liver disease may be exhausting. The confusion can be scary. The bleeding can be terrifying. The constant doctor visits and hospital stays wear you down. You may feel like you are drowning in worry and work.

Volunteers can help alleviate some of the day-to-day tasks, like housework, yardwork, or pet care. Caregiver support groups can connect you with people who are also going through similar experiences.

What the Final Days May Look Like

As the liver fails completely, your loved one will sleep more and more. They may not wake up much. They may stop eating and drinking. This is a natural part of the dying process. The body is shutting down.

Breathing may change. It may get slow and shallow, with pauses between breaths. The hands and feet may feel cool to the touch as blood flow slows. The skin may take on a gray or blue tint.

The hospice nurse will prepare you for these changes. They will tell you what is normal at the end of life. They will make sure your loved one is not in pain or distress. And they will stay in close contact so you can call any time, day or night, if you need help or just need to talk.

Making the Choice

Choosing hospice for liver disease is not giving up. It is choosing comfort over aggressive treatment that may not work and may only add suffering. It is choosing to spend the time that remains focused on being together, on saying what needs to be said, on finding moments of peace in a hard time.

Some families wait too long to call hospice. They hope for a miracle. They think hospice means death is coming in days. But starting hospice earlier means getting help sooner. It means having a team to walk with you through the hardest time. It means your loved one can be more comfortable for longer.

Talk to your loved one if they can still have that conversation. Ask what they want. Do they want to keep fighting with treatments that may not help? Or do they want to focus on comfort? Their wishes should guide the choice.

If your loved one cannot speak for themselves anymore, think about what they valued in life. What would they want now? What would bring them peace?

Getting Started with Hospice

If you think it might be time for hospice, talk to your loved one's doctor. Ask if they think hospice is right. Ask for a referral. The doctor can write the order needed for hospice to start.

You can also call Coastal Hospice directly. We can talk with you about what hospice offers. They will help you decide if now is the right time.

We serve families throughout Del Norte County dealing with liver disease and other terminal illnesses. We bring care right to your home in Crescent City, Smith River, Klamath, or wherever you live in the county. We understand the unique needs of people with cirrhosis. We know how to manage the symptoms. We know how to support families facing this difficult illness.

We are located on H Street in Crescent City, next door to the Veteran's Hall. You can reach us any time to ask questions or to set up a visit. There is no charge to learn about hospice. There is no pressure. We are here to help you understand your options.

If you have any questions on how we may be able to serve you or your loved one, please contact us by clicking here.