A Systematic Review of Worldwide Guidelines, Protocols, and Health Care Standards for Provision of Palliative Care Services in Progressive Neurological Disorders.

TL;DR

This systematic review of 33 international palliative care guidelines for progressive neurological disorders finds high overall quality but identifies important gaps in spiritual care, disease-specific guidance, and representation from low- and middle-income countries.

Key findings

• Six core themes emerged across guidelines: holistic symptom management, families as care partners, early communication, value-aligned decision-making, multidisciplinary expertise, and medicolegal navigation
• Guidelines adequately addressed physical, psychosocial, and social dimensions of care but inconsistently covered spiritual wellbeing
• Guidelines predominantly originated from high-income countries with disproportionate focus on dementia, limiting global equity and disease representation
• International consensus supports early palliative care integration, proactive communication, and family-centered approaches as foundational principles

Why this matters at the bedside

Practicing physicians managing progressive neurological disorders can reference these internationally consistent principles to optimize palliative care delivery. The review identifies priority gaps requiring workforce education and service development, particularly regarding spiritual care support and condition-specific guidance.