Palliative care for patients with Parkinson’s disease: an interdisciplinary review and next step model

Abstract

Palliative care for patients with Parkinson’s disease: an interdisciplinary review and next step model Kimmy G Su,1 Julie H Carter,1 Keiran K Tuck,2 Tony Borcich,3 Linda A Bryans,4 Lisa L Mann,1 Jennifer L Wilhelm,5 Erik K Fromme6 1Department of Neurology, Oregon Health & Science University, 2The Oregon Clinic-Neurology, 3Parkinson’s Resources of Oregon, 4Northwest Clinic for Voice and Swallowing, Oregon Health and Science University, 5Rehabilitation Services, Oregon Health & Science University, 6Palliative Care Section, OHSU Knight Cancer Institute, Portland, OR, USA Abstract: Late stage Parkinson’s and Parkinson-plus patients have increased needs beyond motor symptom management that cannot be fully addressed in a typical neurology clinic visit. Complicating matters are the concurrent increasing emotional and physical demands on caregivers, which, if addressed, further stretch clinic time constraints. The complex and extensive patient and caregiver needs warrant a dedicated clinic to provide the necessary interdisciplinary care. In contrast to a typical model where the neurology clinician refers the patient to various ancillary treatment groups resulting in multiple separate clinic visits, the interdisciplinary model supports direct communication between the different disciplines during the clinic visit, allowing for a more coordinated response that takes into account multiple perspectives. Such an interdisciplinary model has been utilized in neurologic disorders with complex end-stage disease needs, such as amyotrophic lateral sclerosis with notable improvement in quality of life and survival. The Oregon Health & Science University Parkinson Center and Movement Disorders Clinic has developed an interdisciplinary clinic called Next Step composed of neurology clinicians, a physical therapist, a speech pathologist, a social worker, and a nursing coordinator. The clinic focuses on palliative care issues, including complex late stage motor symptoms, nonmotor symptoms, and quality of life goals of both the patient and caregiver(s). This article describes the Next Step clinic structure and processes, while reviewing the literature and incorporating clinical expertise from the perspective of each discipline. Keywords: palliative care, Parkinson’s disease, caregiver burden, interdisciplinary team, late-stage Parkinson’s, quality of life