Information Paradox in Indian End-Stage Kidney Disease Care, reports research

Managing End-Stage Kidney Disease (ESKD) requires intricate communication regarding complex treatment pathways, yet a lack of structured protocols, limited healthcare provider training, and deep-seated cultural taboos regarding mortality have left a critical void in Indian clinical settings. To address this persistent gap in the literature, Bharathi Naik and a specialized team from the Manipal Academy of Higher Education conducted research to explore Advance Care Planning (ACP) preferences and barriers among Indian patients and their primary caregivers.

Therefore, the convergent parallel mixed-methods study was conducted at a tertiary teaching hospital in South India between October 2022 and September 2023, utilizing a validated 16-item questionnaire for 247 patient-caregiver dyads alongside qualitative semi-structured interviews with 40 participants to achieve data saturation. The team employed descriptive statistics and inductive thematic analysis via Braun and Clarke’s framework to compare dialysis and non-dialysis cohorts, specifically excluding patients with acute kidney injury or cognitive impairments that would hinder the assessment of decision-making preferences.

Key Clinical Findings of the Study Includes:

• Intense Information Preference: The study revealed that 90.7% of patients on dialysis and 94.1% of their matched caregivers desire comprehensive, detailed information about their illness and severity.

• Documentation Resistance: In a sharp contrast, only 20.4% of dialysis patients and a mere 9.2% of those managed conservatively without dialysis were willing to document their future wishes, showing a significant statistical difference between the two groups.

• Collaborative Decision Preference: A shared decision-making model is overwhelmingly favored, with 72.5% of dialysis patients and 85.4% of their caregivers preferring a process that involves the family and the clinical team.

• Supportive Care Knowledge Deficit: Highlighting a major clinical hurdle, the research found that 99.4% of patients on dialysis and 98.7% of non-dialysis patients had no prior awareness of supportive care measures or the scope of palliative services.

• Survival Talk Hesitation: Despite a high interest in disease details, only 38.6% of dialysis patients and 27.6% of non-dialysis patients were willing to discuss their specific expected length of survival.

The results suggest that a critical disconnect exists between the high desire for clinical transparency and the low readiness for formal planning documentation among Indian renal patients. This discrepancy is likely driven by emotional fatigue, financial stress, and systemic barriers that require tailored, behavior-change-driven strategies to overcome through progressive, low-stakes engagement rather than one-time legal actions.

Thus, the study concludes clinicians should consider integrating culturally sensitive, family-inclusive discussions into standard renal care pathways early in the disease course to normalize the planning process and enhance patient-centered outcomes.

While the single-center design and use of convenience sampling in South India may limit the broad generalizability of these findings across diverse regions, future longitudinal research is necessary to explore how these preferences evolve over time and whether documented plans are eventually honored in clinical practice.

Reference

Naik, B., Damani, A., Ghoshal, A., Nagaraju, S. P., Singhai, P., Ammunje, S. N., Attur, R. P., & Salins, N. (2025). Barriers and preferences in advance care planning: a mixed-methods study of end-stage kidney disease patients and caregivers in India. BMC Nephrology, 26(415).