Palliative care for Parkinson’s disease:

 A summary of the evidence and future directions

1. Edward W Richfield
   1. Supportive Care, Early Diagnosis and Advanced disease research group, University of Hull, Hull York Medical School, Hull, UK
2. Edward JS Jones
   1. Department of Elderly Care, Scarborough and North East Yorkshire NHS Trust, Scarborough, UK
3. Jane E Alty
   1. Department of Neurology, Leeds Teaching Hospitals NHS Trust, Leeds, UK

1. E Richfield, Hull York Medical School, Hertford Building, Hull HU6 7RX, UK. Email: edrichfield@hotmail.com

Abstract

Background: Parkinson’s disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson’s disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision.

Aim: To summarise the evidence base for palliative care in Parkinson’s disease, linking current understanding with implications for clinical practice and identifying areas for future research.

What is known: Convention recognises a final ‘palliative phase’ in Parkinson’s disease, while qualitative studies suggest the presence of palliative care need in Parkinson’s disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson’s disease, with particular implications for end-of-life care and advance care planning.

Implications for clinical practice: The ‘palliative phase’ represents a poor entry point for consideration of palliative care need in Parkinson’s disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions.

What is unknown: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care.

Implications for future research: Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson’s disease.