Facilitators
Christiane Weck
Stefan Lorenzl
About the course
Part 1: Best palliative care model to provide the patient with comfort and support. A summary of the palliative care management issues and palliative care management options of late stage PD patients.
Part 2: Nutrition related issues and problems which may arise when caring for somebody suffering from late stage Parkinson`s disease and the different management options including feeding tubes.
Learning Objectives
Understand the clinical aspects of specialist palliative care in Parkinson’s disease
Be able to recognize, assess and manage common symptoms in late stage PD
Understand the social aspects of eating.
Swallowing problems in the advanced stages of the disease.
Comprehend when a feeding tube is indicated and what it entails.
Be aware of speech therapeutics options towards eating.
Summary & Scheduling
Part 1: Best palliative care model to provide the patient with comfort and support. A summary of the palliative care management issues and palliative care management options of late stage PD patients.
Part 2: Nutrition related issues and problems which may arise when caring for somebody suffering from late stage Parkinson`s disease and the different management options including feeding tubes.
Learning Content
Attitude: In advanced PD patients, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and comforting nature. Participants will understand the social dimension of nutrition beyond medical decision making.
Knowledge: Participants will get to know how late stage symptoms are managed. Specifically:
• Motor symptoms and motoric complications including rigidity and mobility
• Autonomic symptoms including pain
• Psychiatric complications including depression, hallucinations, cognitive decline
• Hypoactive delirium
• Breathing dysregulation
• Dopaminergic crisis
• Obstipation and severe vomiting
• The social importance of food
• Nutrition and Hydration in the advanced stage of PD
• Swallowing problems
• Ethical and social implication of feeding tubes (e.g.) PEG-tubes
• Hygiene and managing the side effects
Skills: Being able to treat motor complications in late-stage PD needs to increase the time with a view to decreasing dyskinesias and decreasing the occurrence of motor and non-motor off times. Practical skills also include palliative sedation (timeframe, indications etc.) and availability of scheduled analgesics & analgesics on demand (PRN). Moreover, how to manage specific emergencies which might occur in the final phase, for example, the dopaminergic crisis and vomiting. Be able to recognise and deal with swallowing problems. Understand what the installation of a gastric tube means for a patient, how care should be provided and which are the alternatives.
Teaching Methods
• Presentation (slides)
• Video component
• Reading materials
Literature
• Schrag A, Hommel ALAJ, Lorenzl S, Meissner WG, Odin P, Coelho M, Bloem BR, Dodel R; CLaSP consortium. The late stage of Parkinson's -results of a large multinational study on motor and non-motor complications. Parkinsonism Relat Disord. 2020 Jun;75:91-96. doi: 10.1016/j.parkreldis.2020.05.016.
• Hommel ALAJ, Meinders MJ, Weerkamp NJ, Richinger C, Schmotz C, Lorenzl S, Dodel R, Coelho M, Ferreira JJ, Tison F, Boraud T, Meissner WG, Rosqvist K, Timpka J, Odin P, Wittenberg M, Bloem BR, Koopmans RT, Schragand A; CLaSP consortium. Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial. J Parkinsons Dis. 2020;10(3):1171-1184. doi: 10.3233/JPD-202033.
• Hommel ALAJ, Meinders MJ, Lorenzl S, Dodel R, Coelho M, Ferreira JJ, Laurens B, Spampinato U, Meissner W, Rosqvist K, Timpka J, Odin P, Wittenberg M, Bloem PhD BR, Koopmans RT, Schrag A; Care of Late‐Stage Parkinsonism Consortium. The Prevalence and Determinants of Neuropsychiatric Symptoms in Late-Stage Parkinsonism. Mov Disord Clin Pract. 2020 May 21;7(5):531-542. doi: 10.1002/mdc3.12968.
• Titova N, Chaudhuri KR. Palliative Care and Nonmotor Symptoms in Parkinson's Disease and Parkinsonism. Int Rev Neurobiol. 2017;134:1239-1255. doi: 10.1016/bs.irn.2017.05.014.
• Birnbacher, D. (2014). Sterbefasten – eine ethische Bewertung. Humanistischer Pressedienst.
• Burgos, R., Bretón, I., Cereda, E., Desport, J., Dziewas, R., L., G., et al. (2018). ESPEN guideline clinical nutrition in neurology. Clinical Nutrition.
• Elena Klinik Kassel, S. (kein Datum). Schluckstörung bei Parkinson; Invormationsblatt für Patienten und Angehörige.
• Evans, S., Soar, N., Lang, A., P., S., Archer, S., & Birns, J. (28. November 2019). Risk feeding in the advanced stages of Parkinson’s disease. Progress in Neurology and Psychiatry.
• Goldman, J., & Postuma, R. (August 2014). Premotor and non-motor features of Parkinson`s disease. Current Opinion in Neurology, S. 434-4441.
• Höglinger G. U. (2018). Parkinson-Syndrome kompakt. Thieme.
• Jox, R., Black, I., Borasio, G. D., & Anneser, J. (2017). Voluntary stopping of eating and drinking: is medical support ethically justified? BMC Medicin.
• Manor, Y., Giladi, N., Cohen, A., Fliss, D., & Cohen, J. (15. October 2007). Validation of a swallowing disturbance questionnaire for detecting dysphagia in patients with Parkinson's disease. Movement disorders, S. 1917-21.
• Myrte E. Hamburg, C. F. (31. Januar 2014). Food for love: the role of food offering in empathic emotion regulation. Frontiers in Psychology.
• Parkinson`s, U. (March 2018). Diet and Parkinson`s. Brochure.
Assessment
• Presentation (slides)
• Video component
• Reading materials