Interdisciplinary palliative care for people with advanced Parkinson’s disease: a view from the home

Abstract

Background: Advanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers.Methods: With the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model.Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases.Results: The pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients. Conclusions:As our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.

Novel Outreach Program and Practical Strategies for Patients with Parkinsonism in the COVID-19 Pandemic1

“…Early in the pandemic, these factors, care disruptions, and potential virusassociated risks raised significant concern about vulnerable patients within our movement disorders practice, inspiring a proactive COVID-19 outreach program. Our longitudinal work with homebound individuals with advanced PD and parkinsonism [11][12][13], an already socially-isolated group, informed the program, strategies, and resources recommended.…”

The Role of the Primary Care Physician in the Management of Parkinson’s Disease Dementia

“…A palliative approach to PDD should be discussed with patients, their caretakers, and families in advance regarding management of the advanced stages of PDD, especially at the terminal periods. PDD patients may have several needs in the four domains of palliative care (physical, psychological, social, and spiritual) in addition to specific needs for a peaceful, familiar environment, and practical support [70][71][72]. "Person-centered care, communication and shared decision making" is among the most important domains of palliative care in dementia [73].…”

“…The palliative care should be carried out by a comprehensive team which includes physicians as leaders, registered nurses, office supportive staff, social workers, religious leaders, family members and/or supporting network, a disease focus group and so forth. An in-home model of palliative care for homebound advanced PD and PDD patients was recently introduced in 2020, which highlights the importance of medication reconciliation, home safety assessments, and appropriate monitoring and treatment of orthostatic hypotension, a leading cause of falls [71]. At this stage not only patients' needs, but also families' needs should be addressed.…”

Longitudinal, Interdisciplinary Home Visits Versus Usual Care for Homebound People With Advanced Parkinson Disease: Protocol for a Controlled Trial

“…Although our pilot results suggest that the presumed parallel decline and inextricable connection between PD severity and QoL may be disentangled, the study was limited by size, had restricted geographic diversity, and lacked a control group. To address sustainability and costs, we developed a hybrid approach with the in-home nurse connecting to the physician by video, and the social worker attending initial visits in-home and subsequent visits by video alongside the physician, creating a telehealth-enhanced home visit [ 35 ].…”