A Systematic Review of Worldwide Guidelines, Protocols, and Health Care Standards for Provision of Palliative Care Services in Progressive Neurological Disorders.
Jessica Kaplonyi, Samantha M Loi, Julie C Stout and 3 others
PMID 42708370WHAT IT FOUND
Palliative care guidelines for progressive neurological disorders emphasize symptom management, caregiver support and early planning, but spiritual wellbeing is rarely covered and no guideline addresses all four WHO domains.
Key findings
01No included guideline addressed all four WHO palliative care domains, and spiritual wellbeing was covered in only 12 of 34 studies (36%).
02Guidelines emphasized early initiation, regular review, and responsiveness to change in palliative care planning.
03Families and caregivers were described as having their own care needs, with support continuing after death.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for RNs
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What it does not show
The review maps guideline documents, not patient outcomes, so it cannot show that following the recommendations improves care. Most guidelines came from high-income regions and Europe, so they may not fit low-resource services. Dementia had more dedicated guidance than other progressive neurological disorders, so condition-specific needs may be hidden. Recommendation wording varied across documents, making consistent identification and synthesis challenging. The quality appraisal relied partly on subjective judgment, and the main appraisal was not fully independent for every document.
The easy way to misread this
Do not read the six themes as proof that these palliative care approaches work in progressive neurological disorders. The review summarizes guideline content and does not test patient outcomes.