Objective: To investigate current status of advance care planning in patients with Parkinsonian disorders

Background: End-of-life sufferings of patients with Parkinson’s disease (PD) were reported to be comparable to end-stage cancer. However, discussions about prognosis and advance care planning for Parkinsonian disorders has not being done systemically between physicians, patients and family members in South Korea. 

Methods: We reviewed medical records of patients who were admitted in neurology department of Bobath memorial hospital from Sep 2012 to Aug 2016, and diagnosed with PD with or without dementia, multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Baseline demographic factors, clinical data of Parkinsonian disorders, and status of advance directives (ADs) were investigated. 

Results: 85 patients with Parkinsonian disorders (56 PD, 10 MSA, 15 PSP, 4 CBD) were enrolled. The mean age at study was 78.79±7.04 (mean ± SD) years, mean onset age of Parkinsonian disorders was 71.54±7.47 years, and disease mean duration was 7.36±3.67 years. Most of enrolled patients were wheelchair-bound or bed-ridden state; H-Y stage 5: 67 (78.8%). Mean duration of long-term care hospital stay was 21.25±22.22 months, and main causes of long-term care hospital stay were poor mobility/gait (32, 37.6%), dysphagia/aspiration (23, 27.1%), behavioral-psychiatric problem (21, 24.7%), nonmotor symptom (8, 9.4%) and motor fluctuation (1, 1.2%). About half of them (41, 48.2%) were fed through non-oral route (nasogastric or percutaneous gastrostomy tube) and tracheostomy was taken in 12 patients (14.1%). Disccusion of ACP was done in 60 patients (70.6%), and 23 patients (27.1%) completed ADs. Among patients who did not complete ADs, 27 patients (37.8%) made decisions of end-of-life care but did not sign up ADs and other 10 patients (11.8%) could not made decisions. There were 25 patients (29.4%) and their families who did not discuss about end-of-life care. Twenty patients had died during study period, and mean interval between the day which ADs were signed up on and the death was 153.87±209.49 days.

Conclusions: This study showed various discussion process of ACP and difficulties in completing ADs in Parkinsonian patients and their families. Further study is needed to set up ideal and specific discussion process of ACP in Parkinsonian patients.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/advance-care-planning-in-advanced-parkinsonian-patients-in-a-long-term-care-hospital/