The decision to forgo or discontinue dialysis treatment for End-Stage Renal Disease (ESRD) is a deeply personal and serious medical choice. ESRD describes the final stage of chronic kidney failure, where the kidneys have lost nearly all their ability to function. Dialysis is a life-sustaining treatment that artificially filters waste products and excess fluid from the blood, essentially performing the function of healthy kidneys. When a patient chooses not to pursue this treatment, the underlying disease process continues without medical intervention to replace this filtering function. This article addresses the medical course and the supportive care available when a patient makes the choice to decline or withdraw from renal replacement therapy.
The Body’s Response to Kidney Failure
The absence of renal replacement therapy allows the toxic byproducts of metabolism to accumulate within the bloodstream, creating a condition known as uremia. The kidneys are responsible for clearing substances like urea and creatinine, and their buildup creates a toxic environment that affects almost every organ system. This accumulation of metabolic waste sets the stage for systemic organ failure.
A particularly dangerous consequence is the inability to regulate electrolytes, especially potassium. Without filtration, the potassium level in the blood, known as hyperkalemia, can rise rapidly to dangerously high concentrations. This severe imbalance directly impairs the electrical signaling of the heart muscle, potentially leading to life-threatening cardiac arrhythmias. Furthermore, the kidneys fail to excrete acid, resulting in severe metabolic acidosis, which further depresses organ function.
Fluid retention, or volume overload, is another inevitable consequence of kidney failure without dialysis. The body retains salt and water that the kidneys can no longer eliminate, causing fluid to shift into the tissues. This excess fluid significantly strains the cardiovascular system, increasing blood pressure and causing the heart to work harder. Severe fluid retention can quickly lead to heart failure and the congestion of fluid in the lungs.
Symptom Progression and Timeline
The buildup of toxic waste products and fluid manifests in a predictable set of increasingly severe physical symptoms for the patient. The timeline for decline without dialysis is highly variable, depending on the patient’s remaining kidney function and overall health. For patients actively withdrawing from dialysis, the median life expectancy is generally reported to be around seven days, though some may live for a few weeks.
Neurological and cognitive changes are common as uremic toxins cross the blood-brain barrier, leading to uremic encephalopathy. Patients may experience confusion, difficulty concentrating, and a decrease in mental sharpness. In the later stages, muscle twitching and cramps may occur, and severe uremia can ultimately lead to seizures and a deepening state of drowsiness.
Cardiopulmonary symptoms are often the most distressing and life-limiting due to fluid overload. Excess fluid in the chest can lead to pulmonary edema, causing severe shortness of breath and a persistent cough. The fluid can also accumulate around the heart, causing pericarditis, which may result in chest pain.
Gastrointestinal symptoms frequently include persistent nausea, vomiting, and a significant loss of appetite. Patients may also report a metallic or unpleasant taste in their mouth, known as dysgeusia, which contributes to poor oral intake. These symptoms often lead to rapid weight loss and overall weakness.
General systemic discomfort includes profound fatigue and weakness, often due to anemia and the overall toxic state of uremia. Severe and persistent itching, or pruritus, is also a hallmark of late-stage kidney failure, caused by metabolic disturbances and toxins in the skin. These physical symptoms progressively worsen until the body’s systems can no longer sustain life.
Managing Comfort and Quality of Life
The decision to forgo dialysis shifts the goal of care from prolonging life to maximizing comfort and quality of life, which is the focus of palliative care. Palliative care and hospice services are structured to provide comprehensive symptom control and emotional support during this process. This approach ensures that choosing to stop life-sustaining treatment does not equate to abandoning medical care.
Specific medical interventions are used to manage the most uncomfortable symptoms associated with uremia and fluid overload. Medications are administered to control pain, persistent nausea, and anxiety, ensuring the patient remains peaceful. For the distressing symptom of shortness of breath caused by fluid in the lungs, diuretics or a single session of ultrafiltration can be used to remove excess fluid and alleviate respiratory distress.
The severe itching characteristic of uremia can be managed with specific antipruritic medications that target the underlying causes. Fatigue, a common complaint, can sometimes be mitigated with treatments like erythropoietin-stimulating agents to address anemia, which may enhance the patient’s energy and well-being. The multidisciplinary care team, including nurses, social workers, and chaplains, provides emotional and spiritual support for both the patient and their family.
The patient’s right to refuse any medical treatment, including dialysis, is a fundamental aspect of patient autonomy. Advance care planning, such as establishing a living will or naming a healthcare proxy, becomes an important step to ensure the patient’s wishes are clearly documented and honored. This proactive planning provides peace of mind and directs the medical team to prioritize comfort measures throughout the patient’s final days.