Week 12: Testimonials and Discussion on Advanced Directives
Course length
3 to 4 hours
Facilitators
Stefan Lorenzl
Angelo Antonini
Anette Schrag
Pille Taba
About the course
Stories from patients and families describing how they reached their ACP decisions, how satisfied they are with these decisions, and why they feel that way (3 hours).
Learning Objectives
Comprehend patients’ and caregivers’ views on advance care planning
Understand different perspectives in complex, advance care decisions
Summary & Scheduling
Stories from patients and families describing how they reached their ACP decisions, how satisfied they are with these decisions, and why they feel that way (3 hours).
Learning Content
Attitude: Participants are encouraged to collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patients’ preferences to maintain their quality of life.
Knowledge: Participants will have improved knowledge of how:
• PD-related life changes impact daily life activities and affect future planning, including advance care
• Support and advice should be provided for life changes within a structured decision-making process
• Important the personalization of the provided information and support (no ‘one-size-fits-all’ models) is for patients and their caregivers
Skills: Enable patients and their caregivers to make informed decisions in collaboration with their formal healthcare providers.
Teaching Methods
• Presentation (slides)
• Video component
• Reading materials
• Course feedback
• Final exam
Literature
• Lum HD, Jordan SR, Brungardt A, Ayele R, Katz M, Miyasaki JM, Hall A, Jones J, Kluger B. Framing advance care planning in Parkinson disease: Patient and care partner perspectives. Neurology. 2019 May 28;92(22):e2571-e2579. doi: 10.1212/WNL.0000000000007552. Epub 2019 Apr 26. PMID: 31028124; PMCID: PMC6556088.
• Armstrong MJ, Alliance S, Taylor A, Corsentino P, Galvin JE. End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers. PLoS One. 2019 May 30;14(5):e0217039. doi: 10.1371/journal.pone.0217039. PMID: 31145749; PMCID: PMC6542529.
• Sokol LL, Young MJ, Paparian J, Kluger BM, Lum HD, Besbris J, Kramer NM, Lang AE, Espay AJ, Dubaz OM, Miyasaki JM, Matlock DD, Simuni T, Cerf M. Advance care planning in Parkinson's disease: ethical challenges and future directions. NPJ Parkinsons Dis. 2019 Nov 22;5:24. doi: 10.1038/s41531-019-0098-0. PMID: 31799376; PMCID: PMC6874532.
• Tuck KK, Brod L, Nutt J, Fromme EK. Preferences of patients with Parkinson's disease for communication about advanced care planning. Am J Hosp Palliat Care. 2015 Feb;32(1):68-77. doi: 10.1177/1049909113504241. Epub 2013 Sep 19. PMID: 24052430.
Assessment
• Presentation (slides)
• Video component
• Reading materials
• Course feedback
• Final exam