Palliative care and Parkinson’s disease: outpatient needs and models of care over the disease trajectory
A palliative approach to care is person-centered and aims to minimize overall disease burden among patients with serious illnesses. There is rising interest in the role of palliative care to improve quality of life among patients with Parkinson’s disease (PD). While there is a clear indication for palliative care involvement in those with advanced disease, there is also increasing evidence for the role palliative care may play earlier in the course of PD. However, optimal methods for timing and implementation of these services remain unclear. Here, we aim to explore the palliative needs of individuals with PD from the time of diagnosis over the entire course of the illness. We discuss methods for delivering palliative care services including consultative specialty palliative care, neurologist or primary care-delivered palliative care (primary palliative care), and the emerging specialty of neuropalliative care. We also explore novel care delivery methods and their role in improving patient access to palliative services. We argue that primary palliative care is optimally positioned for the delivery of palliative care for the majority of patients with PD over the course of their illness and explore how and when palliative medicine or neuropalliative specialists can supplement this care. Finally, we describe gaps in our current understanding of outpatient palliative care delivery among the PD population including the development of better methods to identify the palliative needs of patients, the validation of novel care delivery mechanisms, and the need to enhance neurologists’ and other medical providers’ education in the provision of palliative care services.