Annals of palliative medicine
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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. ⋯ 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.
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Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis. ⋯ Patients and care partners described key needs related to future planning that can inform a comprehensive roadmap to assist with education, communication, and decision making. A roadmap tool can promote individualized anticipatory guidance and multidimensional shared decision-making discussions between patients, care partners, and the healthcare team related to PD progression.
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Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. ⋯ Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.