Objectives People with Parkinson’s disease (PwP) have a high palliative symptom burden throughout their disease course, equivalent to advanced malignancy. We aim to establish trends in symptom frequency and prescribing in the 72 hours prior to death for PwP.
Methods Retrospective case note review of PwP who died between February 2019 and September 2020.
Results 51 patients were included. 60.78% of patients (n=31) had agitation and 58.82% (n=30) had pain in the final 72 hours. Patients with cognitive impairment were 4.67 times more likely to experience agitation (p=0.035) compared with those without, with higher total midazolam doses (29.18 mg vs 11.4 mg, p=0.21). Terminal motor symptoms were recorded in three patients. 28.57% of patients received the recommended dose of rotigotine for dopaminergic therapy.
Conclusions PwP have a significant symptom burden at the end of life (EOL) with levels of terminal agitation at the higher end of those expected in the general population. There was a trend towards higher doses of sedation, rather than analgesia, in people with coexistent cognitive impairment.
Terminal stiffness, despite being seldom documented in the literature, is an important although infrequent symptom.
Rotigotine use at EOL remains commonplace and better understanding of its effect and dosing is required.
- Symptoms and symptom management
- Terminal care
- Neurological conditions
- Drug administration
- Chronic conditions
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Contributors EAW collected the data, analysed the data and drafted and revised the manuscript. EK-O designed the data collection tool, contributed to data collection and revised the manuscript. EWR initiated the project, designed the data collection tool and revised the manuscript. All authors contributed to study design.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.