Condition Guide
Liver Failure.
Support, Comfort & Planning
A compassionate guide for patients, families, and caregivers, written in plain language to help you understand, prepare, and find support.
Disease Overview
Understanding
End-Stage Renal Disease.
End-Stage Renal Disease (ESRD), also called kidney failure or end-stage kidney disease, occurs when the kidneys have permanently lost most of their function, typically to less than 15% of normal capacity. The kidneys are responsible for filtering waste, balancing fluids, regulating blood pressure, and producing hormones essential to red blood cell production and bone health. When they fail, these functions break down, causing a buildup of toxins and fluid that affects virtually every organ system. Treatment options include dialysis (hemodialysis or peritoneal dialysis), kidney transplantation, or, particularly for older or more frail patients, conservative management focused on comfort and quality of life.
About Liver Transplant
Transplantation is the only definitive treatment for end-stage liver disease, but not all patients are eligible. For those who are not transplant candidates, palliative care focuses on managing complications like ascites, hepatic encephalopathy, and pain while maintaining the highest possible quality of life for as long as possible.
How Palliative Care Helps
The Rose Program works alongside your existing care team to manage symptoms, clarify goals of care, reduce unnecessary hospitalizations, and ensure your voice is heard at every step of your care journey - whatever the diagnosis, whatever the stage.
Signs & Progression
What families may
begin noticing.
As liver failure progresses, symptoms evolve and intensify. Understanding what to watch for helps families respond thoughtfully and proactively, rather than in crisis.
Jaundice
Yellowing of the skin and whites of the eyes as the liver fails to process bilirubin, one of the most visible signs of liver failure.
Ascites (Abdominal Fluid)
Accumulation of fluid in the abdomen causes significant swelling, discomfort, and difficulty breathing, often requiring drainage procedures (paracentesis).
Hepatic Encephalopathy
Confusion, forgetfulness, personality changes, disorientation, and, in severe cases, coma, are caused by toxins accumulating in the blood that the damaged liver cannot filter.
Profound Fatigue
Overwhelming tiredness that is not relieved by rest, significantly limiting daily activity and quality of life.
Bleeding & Bruising
The liver produces clotting factors. When it fails, easy bruising, prolonged bleeding, and risk of dangerous internal bleeding (varices) increase significantly.
Nausea, Vomiting & Loss of Appetite
Digestive disturbance, severe loss of appetite, and muscle wasting (cachexia) are common as the disease advances.
For Families
What families
can expect.
Advanced liver disease often progresses in a pattern of manageable periods interrupted by acute complications, including episodes of hepatic encephalopathy (confusion), ascites requiring drainage, or bleeding. These complications are frightening and emotionally exhausting for families.
As the disease advances, the person with liver failure may experience significant personality changes, confusion, and physical deterioration. It's important for families to understand that confusion and behavioral changes are medical symptoms, not choices, and to approach them with compassion. Planning ahead, including decisions about transplant evaluation, hospitalization preferences, and comfort-focused care, is essential.
Treatment Decisions Are Personal
There is no single 'right' choice for ESRD treatment. Dialysis, transplant, and conservative management each have different implications for quality of life, burden, and longevity. The Rose Program's role is to ensure patients and families have the information they need to make decisions that reflect their values, not just their diagnosis.
We Are Here
"By anticipating needs and talking about what people want ahead of time, we translate goals into a medical and life plan that allows people to feel confident and in control."
The Rose Program
Caregiver Support
You are not
alone in this.
Caregiving is one of the most profound acts of love, and one of the most demanding. The emotional, physical, and logistical weight of caring for someone with a serious illness can be enormous. You deserve support as much as your loved one does.
The Rose Program's team includes social workers, counselors, and palliative specialists who provide support not only to patients but also to families and caregivers.
Medication Management is Critical
Many medications, including over-the-counter pain relievers like acetaminophen, are dangerous for patients with liver disease. Always check with the care team before giving any new medication.
Support Nutrition Carefully
Patients with advanced liver disease often have very poor appetite but high nutritional needs. Small, frequent meals and protein-rich foods (as tolerated) are important; work with a dietitian.
Watch for Warning Signs
Increasing confusion or agitation, sudden abdominal pain, vomiting blood, or black tarry stools are medical emergencies. Know the warning signs and have a clear plan with the care team.
Seek Your Own Support
Caring for someone with advanced liver disease, with its unpredictable complications and cognitive changes, is extraordinarily demanding. Reaching out to a counselor, support group, or palliative care social worker is not a sign of weakness.
Community Resources
Support organizations
& helpful resources.
You are not alone. These trusted organizations offer education, support groups, hotlines, and community connections for patients and families.
EDUCATION
United Network for Organ Sharing (UNOS)
Transplant policy, waiting list information, and resources for patients and families navigating liver transplant evaluation.
NATIONAL ORGANIZATION
American Liver Foundation
Disease education, patient support, caregiver resources, and a national helpline for liver disease patients and families.
HELPLINE
American Liver Foundation Helpline
Connect with liver health specialists for information, referrals, and emotional support.
SUPPORT
Hepatitis B Foundation / Hepatitis C Trust
For patients whose liver disease stems from viral hepatitis, education, advocacy, and community support.
The Rose Program is here for you.
Our palliative care specialists work alongside your existing care team to manage symptoms, clarify goals, and support you and your family - at any age, any stage.