Prognosis for ESRD Patients Who Refuse Dialysis
Patients with end-stage renal disease who refuse dialysis can expect a median survival of approximately 6 to 24 months, with the most robust data showing median survival of 1.95 years, though this varies significantly based on comorbidity burden. 1
Survival Estimates Based on Evidence
The prognosis for ESRD patients managed conservatively without dialysis shows considerable variability:
- Median overall survival ranges from 6.3 to 23.4 months across multiple studies, with one-year survival rates of approximately 65%. 1, 2
- The largest prospective observational study (71 patients) demonstrated a median survival of 1.95 years (approximately 23.4 months) with multidisciplinary conservative management. 1
- One-year survival rates vary by comorbidity grade: 83% for patients with no significant comorbidities (grade 0), 70% for grade 1, and 56% for grade 2 comorbidities. 1
Key Prognostic Factors
Comorbidity burden is the single most important independent predictor of survival in patients choosing conservative management:
- The Stoke Comorbidity Grade (SCG) is an independent prognostic factor (p = 0.005), with a hazard ratio of 2.53 for each incremental increase in comorbidity grade. 1
- Ischemic heart disease is particularly significant in reducing survival benefit, even when comparing dialysis to conservative management. 2
- Age alone is less predictive than comorbidity burden, though most patients choosing conservative management are elderly (median age 79 years). 1
Functional Trajectory
Unlike other terminal conditions, ESRD patients maintain relatively stable functional status until the final month of life, when decline becomes precipitous:
- Functional status remains stable throughout most of the last year of life but declines steeply only in the last month before death. 3
- This distinctive "renal trajectory" differs from the gradual decline seen in cancer or the fluctuating pattern in heart failure. 3
- Healthcare services must be rapidly responsive as this steep decline occurs, requiring quick mobilization of palliative resources. 3
Quality of Life Considerations
Patients managed conservatively report high symptom burden but quality of life appears similar to age-matched dialysis patients:
- Common symptoms requiring management include fatigue, sleep disturbances, dyspnea, anxiety, pruritus, and xerostomia (dry mouth). 4, 5
- Preliminary studies suggest quality of life is similar between conservative management and dialysis in elderly patients with significant comorbidities. 2
- 71% of conservatively managed patients died at home in their preferred location, compared to the majority of dialysis patients who die in acute care facilities. 1, 6
Clinical Implications for Counseling
When discussing prognosis with patients refusing dialysis:
- Patients with severely limited life expectancy, low quality of life, refractory pain, or progressive deterioration from untreatable disease are appropriate candidates for conservative management. 4
- The survival benefit of dialysis decreases substantially in elderly patients with multiple comorbidities, particularly cardiovascular disease. 2
- Annual mortality for patients on dialysis exceeds 20%, with adjusted 3-year and 5-year survival of only 55% and 40% respectively, indicating dialysis itself does not guarantee long-term survival. 6
Essential Management Components
All patients choosing conservative management must receive integrated palliative care:
- Palliative care should focus on reducing symptom burden while improving quality of life and well-being, not just end-of-life care. 4
- A multidisciplinary team approach involving nephrology, primary care, community nurses, and palliative care specialists enables most treatment at home. 4, 1
- Regular symptom screening using validated tools (such as ESAS-r:R or Dialysis Symptom Index) should be implemented. 5
- Bereavement support should be offered to families after the patient's death. 6
Common Pitfalls
- Avoid focusing solely on laboratory values or eGFR when counseling patients; comorbidity burden and functional status are more predictive of outcomes. 5, 7
- Do not assume imminent death when patients decline dialysis initiation—unlike dialysis withdrawal, these patients can live for months to years with appropriate supportive care. 2
- Recognize that the steep functional decline occurs late, so patients and families may underestimate how quickly intensive support will be needed in the final weeks. 3