Neuropalliative Care in Movement Disorders.

Résumé

OBJECTIVE: This article familiarizes readers with the multidimensional suffering experienced by people living with movement disorders and their families and presents a neuropalliative care framework and skillset to prevent and address this suffering.LATEST DEVELOPMENTS: Over the past decade, significant progress has been made to advance palliative care approaches for patients with Parkinson disease and other movement disorders. This population has significant palliative care needs that are poorly met under traditional models of care, including nonmotor symptom management, advance care planning, psychosocial support, spiritual and existential support, care partner support, and timely referrals for specialist and end-of-life palliative care (hospice). Clinical trials demonstrate that specialist palliative care can improve many patient and family outcomes. Emerging data also suggest that primary palliative care approaches (neurologists applying palliative care skills) may improve some outcomes, but further work is needed to determine optimal models for neurologist education and integration into practice.ESSENTIAL POINTS: Neurologists can use the five-pillars framework (nonmotor symptoms, advance care planning, psychosocial and spiritual support, care partner support, and timely involvement of specialist palliative care) to systematically address common sources of suffering that are poorly recognized in traditional models of care. This framework can be integrated into previsit screening forms and note templates to improve the detection of palliative issues. As with other complex medical issues (eg, deep brain stimulation), there may be times when visits may need to focus on palliative topics or referrals made to other health care providers to ensure optimal outcomes.