Charting the future: A multi-setting medical chart study of advance care planning in Parkinson's disease and atypical Parkinsonism

Background Advance Care Planning (ACP) enables people with progressive diseases to document and communicate future treatment preferences. For Parkinson's disease (PD) and atypical parkinsonism (AP), ACP is particularly important because of disease complexity, symptom burden, the progressive nature of the disease, and cognitive decline, yet its implementation across care settings remains unclear. Methods We conducted a medical chart review of 189 deceased patients with PD or AP who died in nursing homes (n = 91), hospitals (n = 58), or at home (n = 40) in the Netherlands. For patients who died at home, data were obtained from their general practice records. Data on treatment preferences, care discussions and palliative care goals were extracted at one year and six weeks before death. Results Documentation of treatment preferences increased towards death but differed markedly between settings. Nursing homes recorded resuscitation and ICU limitations early and comprehensively, whereas hospitals made major updates only in the final weeks of life. In general practices, ACP documentation was limited. Nursing homes and hospitals more frequently addressed disease-specific scenarios, palliative sedation and end-of-life issues, while general practices more often reported preferred place of death and euthanasia. Palliative care goals in nursing homes covered all domains, while in hospitals and general practices they mainly related to physical aspects. Conclusion ACP remains inconsistently documented and frequently delayed until the final weeks of life, when crises or cognitive decline may hinder meaningful participation. Earlier, iterative ACP—supported by clinician training, PD-specific guidance, and system-level measures such as ACP prompts in electronic medical records—could foster a more proactive and person-centered palliative approach aligned with patient values throughout the disease trajectory.