Palliative Care for Patients and Families With Parkinson's Disease.

Abstract

Parkinson's disease is the second most common neurodegenerative disease worldwide. There is widespread consensus that Parkinson patients, their carers, and clinicians involved in their care would benefit from a fully integrated, need-based provision of palliative care. However, the concept of palliative care in Parkinson's disease is still poorly defined and, consequently, poorly implemented into daily clinical practice. A particular challenge is the gradually progressive nature of Parkinson's disease-with insidiously increasing disability-making it challenging to clearly define the onset of palliative care needs for Parkinson patients. As people with Parkinson's disease are now living longer than in the past, future research needs to develop a more robust evidence-based approach to clarify the disease events associated with increased palliative care needs, and to examine these, prospectively, in an integrated palliative care service. The modern palliative care outlook, termed "simultaneous care,",is no longer restricted to the final stage of disease. It involves incorporating a continuity of care, effective management of the chronic-palliative interface, and a multidisciplinary network of professionals working both in the community and in specialized clinics, with active involvement of caregivers. Although promising, there is still a need to demonstrate the effectiveness of palliative care for patients with Parkinson's disease.