A glimpse of the end-of-life of people with Parkinson's disease and atypical parkinsonism: A descriptive analysis of electronic health records

Background The needs of people with Parkinson's disease (PD) or atypical parkinsonism (AP) change significantly in the final weeks to days of life. A better understanding of this phase can help improve care. Objective To examine healthcare use and end-of-life care in people with PD. Methods We conducted a retrospective study (2022–2023) in three nursing homes, four hospitals, and eleven general practices in the Netherlands. Electronic health records of deceased individuals with PD or AP were reviewed for symptoms, healthcare use, and professional involvement. Results We reviewed 189 records (70.4% PD; mean age 80.2; 68.1% male). In the last two weeks of life, patients had an average of 8.4 symptoms, with a higher burden in AP. Palliative sedation was used in 60.4%, most often in nursing homes (up to 78.3%) and among AP patients. Euthanasia occurred in 11 cases (6 PD, 5 AP), mainly in nursing homes and general practices. Antibiotics and pain medications were commonly used; fluid and oxygen therapy were more frequent in hospitals. Most patients were treated by a GP and 3–4 other healthcare professionals, but only 12.7% received support from a palliative care team. Conclusions People with PD and AP face a high symptom burden at the end of life, yet palliative care involvement is limited. The frequent use of palliative sedation and cases of euthanasia reflect the complexity of this care phase. Better integration of palliative expertise and research into symptom management is urgently needed.