Improving End-of-Life Care for Patients with Parkinson Disease

Published on September 6, 2023

End-of-life care for patients with Parkinson Disease (PD) is a complex and challenging issue. In this retrospective analysis, researchers examined the in-hospital management and utilization of palliative care (PC) services for patients with PD at the end of life. They found that there are no widely accepted guidelines for managing symptoms in these patients. The study revealed low utilization of PC services and delayed discussions about goals of care. It also identified the need for more awareness among healthcare teams about the unique challenges faced by patients with advanced PD. Based on this research, it is crucial to develop guidelines to assist neurologists, hospitalists, and PC clinicians in providing appropriate care for PD patients at the end of life.

BackgroundTowards the end of life (EOL), persons with parkinsonism (PwP) have complex needs and can present with unique palliative care (PC) challenges. There are no widely accepted guidelines to aid neurologists, hospitalists, or PC clinicians in managing the symptoms of PwP at EOL. We examined a population of PwP at EOL, aiming to describe trends of in-hospital management and utilization of PC services.MethodsAll PwP admitted to two hospitals during 2018 (N = 727) were examined retrospectively, assessing those who died in hospital or were discharged with hospice (EOL group, N = 35) and comparing them to the main cohort. Their demographics, clinical data, engagement of multidisciplinary and palliative services, code status changes, invasive care, frequency of admissions, and medication administration were assessed.ResultsAmong the EOL group, 8 expired in hospital, and 27 were discharged to hospice. Forty-six percent of EOL patients received a PC consultation during their admission. The median interval from admission to death was 37 days. Seventy-seven percent had a full code status on admission. Compared to hospice patients, those who expired in hospital had higher rates of invasive procedures and intensive care unit transfers (41% vs. 75%, in both variables), and lower rates of PC involvement (52% vs. 25%). The transition of code status change for the EOL group from Full code to Do Not Resuscitate (DNR) occurred at a median 4–5 days from admission. For patients that passed in the hospital, the median days from transition of code status to death was 0(IQR 0–1). Levodopa dose deviations were frequent in both EOL and non-EOL group, but contraindicated medications were infrequently administered (11% in EOL group vs. 9% in non-EOL group).ConclusionOur data suggest a low utilization of PC services and delayed discussions of goals of care. More work is needed to raise awareness of inpatient teams managing PwP regarding the unique but common challenges facing PwP with advanced disease. A brief narrative review summarizing the suggested management of symptoms common to hospitalized PwP near EOL is provided.

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