What is End-Stage Liver Disease?
Patients and families often ask, “what is end-stage liver disease?” It’s a good question given that end-stage liver disease is a term that covers an array of different conditions that affect the liver. This includes nonalcoholic fatty liver disease, liver cancer, alcohol-related liver disease, hepatitis B or C and other illnesses, infections, and diseases that affect the liver and bile ducts. When a patient’s liver disease reaches cirrhosis, a stage when the liver damage can no longer be reversed, it becomes a terminal diagnosis.
Unlike most terminal illnesses, a cure may be available for some patients through a liver transplant. While liver transplants for eligible patients have a high success rate, the wait list is long. Unfortunately, because of the eligibility requirements and long wait, only a fraction of patients with liver disease will receive a transplant. Despite this disappointing news, there is still support available to manage symptoms and control pain in patients with end-stage liver disease.
Symptoms of End-Stage Liver Disease
In the earliest stage of liver disease, the liver becomes inflamed. The patient may not even be aware of the inflammation, but left untreated, the inflammation will begin to scar, compromising the function of the liver. Liver inflammation and scarring (also known as fibrosis) can be reversed with proper treatment. Without proper treatment, the damaged liver will progress to cirrhosis.
Common symptoms of cirrhosis include:
- Loss of appetite
- Abdominal pain/bloating
Once a patient is diagnosed with cirrhosis, it can no longer be cured. The focus of treatment changes to stopping the condition from worsening and slowing the disease progression. If the illness worsens to the point of end-stage liver disease, the patient will experience symptoms that include:
- Jaundice – yellowing of the skin and eyes caused when the liver is not able to rid the body of bilirubin.
- Increased risk of internal bleeding – patients may have black stool from internal bleeding or they may vomit blood.
- Buildup of fluid in the abdomen – caused by high pressure in the liver’s veins, fluid will leak into the abdomen and legs.
- Confusion – reduced brain function due to high levels of toxic substances in the body that the compromised liver can no longer process.
How Palliative Care Can Help Patients with Liver Disease
Palliative care can support patients with liver disease at any stage in their diagnosis by providing home visits from a nurse practitioner and social worker to manage symptoms and assist with education and planning for the future. Nurse practitioners work with the patient’s primary care physician or hepatologist by providing an extra set of eyes in the home to assess how the patient’s treatment is working. As the patient's symptoms change, the nurse practitioner can work with the patient's physicians to adjust treatment accordingly. Meanwhile, a social worker assists the patient and family by addressing emotional needs in addition to connecting the patient with additional services available in the community.
How Hospice Can Help Patients with End-Stage Liver Disease
When a patient meets end-stage liver disease hospice eligibility requirements, including a life expectancy of six months or less if the disease follows its typical path, they may begin hospice care. As soon as the patient is admitted to hospice care, a team of hospice professionals will swing into action to provide care wherever the patient resides – including their home, a nursing home, or an assisted living facility.
The hospice team includes a medical director, nurse, aide, social worker, chaplain, bereavement counselors and volunteers who focus on providing the patient with the highest possible quality of life for as long as the patient has. This includes providing all medication, medical equipment, and medical supplies necessary for treatment of the patient’s hospice diagnosis at no cost to the patient or family.
This whole-patient care is designed to support the patient's physical, emotional, and spiritual needs.
To learn more about how Crossroads Hospice & Palliative Care supports patients with liver disease, please call 1-888-564-3405.
If you found this information helpful, please share it with your network and community.
Copyright © 2019 Crossroads Hospice & Palliative Care. All rights reserved.