Learning Objectives
Be able to identify and describe the different “last decisions” in late stage PD.
Have basic knowledge on how to make a will.
Know basics on how to deal with power of attorneys.
Being part of science: participating in clinical studies and the “brain bank” initiative.
Have some basic knowledge on the most important research activities in late stage PD.
Summary & Scheduling
Part 1: Getting to know Advance Care Directives and what Planning includes
Part 2: Relevant Research activities
Learning Content
Attitude: Participants will get familiar with the whole complex subject of Advanced Care Planning (ACP) and of the, most times, challenging, decisions that it entails. Patients are encouraged to participate in clinical studies and even donate cells and tissues.
Knowledge: Participants will:
• learn what ACP is and what it includes
• get some basic knowledge on prognostics in PD
• be informed about the Power of Attorneys and other procedures
• be informed about the importance of the research concerning late stage PD
Skills: Participants are able to explain ACP concepts and its benefits. They are also able to plan advance care according to patients’ needs and preferences.
Teaching Methods
• Presentation (slides)
• Video component
• Reading materials
Literature
• Balzer-Geldsetzer M, Ferreira J, Odin P, Bloem BR, Meissner WG, Lorenzl S, Wittenberg M, Dodel R, Schrag A. Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study. BMC Neurology 2018, 5; 18(1): 185.
• Bower JH, Maraganore DM, McDonnell SK, Rocca WA. Incidence and distribution of Parkinsonism in Olmsted Coutry, Minnesota, 1976-1990. Neurology 1999 (52): 1214-1220.
• DZNE Brain Bank (ed.) Biomaterial Bank of Postmortem Brain Tissue for the Resarch on Neurodegenerative Diseases, https://www.dzne.de/forschung/brain-bank/ (30.03.2020)
• Ebke M, Koch A, Dillen K, Becker I, Voltz R, Golla H. (2018) The “Surprise Question” in Neurorehabilitation—Prognosis Estimation by Neurologist and Palliative Care Physician; a Longitudinal, Prospective, Observational Study. Frontiers in Neurology, 2018, 9:792.
• NICE guideline (ed.) [NG 71]. Parkinson´s Disease in adults, 2017. https://www.nice.org.uk/guidance/ng71/chapter/Recommendations#palliative-care (01.04.2020).
• Oliver D, Borasio GD, Caraceni A, de Visser M, Grisold W, Lorenzl S, Veronese S, Voltz R. Palliative care in chronic and progressive neurological disease: summary of a consensus review. European Journal of Palliative Care 2016; 23(5): 232-235.
• Parkinsons.org.uk (ed.): preparing for end of life. https://www.parkinsons.org.uk/information-and-support/preparing-end-life (05.04.2020).
• https://mrc.ukri.org/research/facilities-and-resources-for-researchers/brain-banks/about-the-uk-brain-banks-network/ (24.03. 2020).
• WHO (ed.). State of the world's nursing 2020: investing in education, jobs and leadership. Geneva: World Health Organization; 2020.
• Seppi K, Ray Chaudhuri K, Coelho M, Fox SH, Katzenschlager R, Perez Lloret S, Weintraub D, Sampaio C; and the collaborators of the Parkinson's Disease Update on Non-Motor Symptoms Study Group on behalf of the Movement Disorders Society Evidence-Based Medicine Committee. Update on treatments for nonmotor symptoms of Parkinson's disease-an evidence-based medicine review. Mov Disord. 2019 Jan 17. doi: 10. 1002/mds. 27602.
Assessment
• Presentation (slides)
• Video component
• Reading materials