Condition Guide
End-Stage Renal Disease.
Understanding Kidney Failure and Choosing the Path That's Right for You
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.
Dialysis Is Not the Only Option
For many patients, particularly older adults, those with multiple serious conditions, or those for whom dialysis is burdensome, conservative kidney management (without dialysis) can provide meaningful quality of life and comfort. The Rose Program can help you explore all your options and make the decision that aligns with your values.
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 end-stage renal disease progresses, symptoms evolve and intensify. Understanding what to watch for helps families respond thoughtfully and proactively, rather than in crisis.
Extreme Fatigue
As toxins accumulate in the blood (uremia), profound exhaustion is one of the earliest and most impactful symptoms of advanced kidney disease.
Fluid Retention & Swelling
Without adequate filtration, fluid accumulates in the legs, ankles, lungs, and abdomen — causing swelling and breathlessness.
Nausea, Loss of Appetite & Weight Loss
Uremic toxins affect the digestive system, causing nausea, vomiting, metallic taste, and significantly reduced appetite.
Cardiovascular Complications
ESRD dramatically increases the risk of heart disease, abnormal heart rhythms, and sudden cardiac events.
Cognitive Changes
Confusion, difficulty concentrating, and in severe cases, altered consciousness (uremic encephalopathy) as toxins affect the brain.
Pain & Discomfort
Muscle cramps, bone and joint pain, skin itching (pruritus), and restless legs are common and significantly impact quality of life.
For Families
What families
can expect.
The trajectory of ESRD depends significantly on the chosen treatment path. For those on dialysis, life continues with a significant time commitment (typically 3 sessions per week, each lasting 3–4 hours) and ongoing medical management. Transplant offers the best long-term outcomes but is not available to all patients. For those on conservative management, the focus shifts entirely to comfort, symptom control, and quality of life.
Families should expect to be involved in treatment decisions, transportation to dialysis, medication management, and dietary adjustments (low potassium, phosphorus, and sodium). Emotionally, the demands are significant, and conversations about what matters most to the patient should guide every decision.
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.
Understand the Renal Diet
Kidney disease requires careful management of potassium, phosphorus, sodium, and fluid intake. Work with a renal dietitian to create a sustainable, satisfying eating plan.
Plan for Dialysis Logistics
If your loved one is on hemodialysis, transportation to and from appointments is a major practical need, especially if they are fatigued afterward. Plan this carefully and ask about transportation support resources.
Know the Warning Signs
Sudden swelling, breathlessness, confusion, decreased urine output, or severe fatigue should prompt immediate contact with the care team.
Respect Their Choices
Decisions about dialysis, transplant, or conservative care belong to the patient. Your role is to be present, informed, and supportive, even if their choice differs from yours.
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.
HELPLINE
NKF Cares Helpline
A toll-free helpline connecting patients and families with kidney health specialists.
NATIONAL ORGANIZATION
National Kidney Foundation
Patient education, peer mentor programs, kidney disease management tools, and a 24/7 helpline.
SUPPORT & COMMUNITY
American Kidney Fund
Financial assistance, educational resources, and support for patients with kidney disease.
SUPPORT GROUP
Kidney Disease: Improving Global Outcomes (KDIGO)
International clinical guidelines and patient resources for kidney disease management.
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.