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

Abstract

Background

Progressive neurological disorders (PNDs) are life-limiting conditions with complex trajectories. PNDs require holistic, person-centred care that responds to the needs of both individuals and their families, including the provision of palliative and end-of-life (EOL) care.

Aims

This systematic review aimed to identify and synthesize existing international guidelines addressing palliative and EOL care in adult PND populations, with particular attention to their quality and scope.

Methods

We searched databases and gray literature sources for guidelines published between January 2013 and February 2026. Thirty-three guidelines were included for review. We appraised guidelines to assess quality and comprehensiveness against the World Health Organization's (WHO) domains of palliative care. We conducted inductive content analysis to identify key themes.

Results

Guidelines predominantly were published from high-income countries and focused on dementia. Overall guideline quality was high. Most addressed physical, psychosocial, and social dimensions of care of the WHO domains; however, spiritual wellbeing was inconsistently addressed. Six interrelated themes emerged: (i) holistic symptom management; (ii) recognition of families and caregivers as partners in care; (iii) early and ongoing communication; (iv) value-aligned decision-making; (v) multidisciplinary team expertise; (vi) navigation of medicolegal complexities.

Conclusion

Findings indicate broad international consensus on the principles of high-quality palliative care in PND, while highlighting gaps in disease/diagnosis representation, spiritual care, and global equity. Future research could consider the importance of disease-specific guidelines, covering regions and countries from across a range of high-, middle-, and lower-income countries.

Clinical Relevance

Clinicians caring for people with progressive neurological disorders can draw on the internationally consistent principles identified in this review including early integration of palliative care, proactive and open communication, and recognition of families as partners in care to benchmark and strengthen their practice. Gaps in spiritual wellbeing, condition-specific guidance, clinical supports, and equitable access represent clear targets for workforce education, service development, and health policy advocacy.