Research & Innovation
Publications
Documented End-of-Life Preferences of People With Parkinson's Disease or Parkinsonism Across Europe
PMU Authors
Katharina M Lex, Stefan Lorenzl
All Authors
, Bauke W Dijkstra, Catharina Muente, Michela Garon, Kristina Rosqvist, Monica Scharfenort, Katharina M Lex, Philip Poku, Eirini Nixina, Pille Taba, Ülle Krikmann, Katrin Sikk, Katie Flanagan, Anette E Schrag, Spyros Konitsiotis, Miltiadis Makrydimas, Stefan Lorenzl, Per Odin, David J Pedrosa, Kris C P Vissers, Marieke M Groot, Bastiaan R Bloem, Marjan J Meinders, Angelo Antonini
Journal association
MOVEMENT DISORDERS CLINICAL PRACTICE
Abstract
BACKGROUND: Parkinson's disease and atypical parkinsonism are characterized by motor and non-motor symptoms. As the disease advances, planning for end-of-life (EoL) care becomes increasingly important. However, consensus-based European guidelines for advance care planning and documentation of EoL care preferences for parkinsonism are lacking. Understanding current documentation practices for EoL care across Europe is an essential first step towards formulating such guidelines.
OBJECTIVES: Provide an overview of the status of EoL care documentation in selected regions of Austria, Estonia, Germany, Greece, Italy and Sweden.
METHODS: Individuals diagnosed with moderate to severe parkinsonism, participating in the PD_Pal trial were enrolled. We reviewed participants' electronic health records (EHRs) and other documentation (eg, advance directives kept at home). A questionnaire was used to extract information on documented EoL care preferences.
RESULTS: One hundred eighty nine participants were included (n = 182 Parkinson's disease; n = 7 atypical parkinsonism). Documented EoL care preferences were identified in 70% of the participants in Germany, 21% in Austria, 17% in Sweden, 7% in Greece, 3% in Italy, and 0% in Estonia. Participants more frequently documented their EoL preferences in advance directives than in EHRs. The content of the documentation was largely general, with limited attention to parkinsonism-specific issues.
CONCLUSIONS: We found considerable variability in the presence of EoL care documentation across European regions. Public awareness and availability of advance directive templates likely contributed to the higher percentage of German participants with advance directives. These should be considered as best practices for enabling individuals with parkinsonism to document their preferences and receive care aligned with them.