Week 8: Advanced Parkinson`s Disease, Death and Dying

Course length

3 to 4 hours

Facilitators

Week 8: Advanced Parkinson`s Disease, Death and Dying

Katharina Lex

Week 8: Advanced Parkinson`s Disease, Death and Dying

Christiane Weck

Week 8: Advanced Parkinson`s Disease, Death and Dying

Stefan Lorenzl

About the course

Helping to comprehend what advanced stage PD means and what additional difficulties and complexities it entails (3 hours).

Learning Objectives

Be able to recognise the advanced stage PD and start or increase the intensity of palliative care.
Understand the difficulties of the advanced stage.
Understand and accept the end-of-life decision-making process.
Be aware of alternative settings and different options for the advanced stage.

Summary & Scheduling

Helping to comprehend what advanced stage PD means and what additional difficulties and complexities it entails (3 hours).

Learning Content

Attitude: Participants will comprehend that the patients and caregivers might need extra support in the advanced stage coping with the disease.
Knowledge: Participants will get to know:
• Global facts about the advanced stage of PD
• The meaning of falling out of care
• The gender gap
• Prognostication in PD
• Symptoms and indications of advanced stage of PD
• Triggers and indicators for referral to specialist palliative care
Skills: Participants are able to coordinate and manage an informed and structured decision-making process, including referral to palliative care in different care settings.

Teaching Methods

• Presentation (slides)
• Video component
• Reading materials

Literature

• Baldereschi M, DiCarlo A, RoccaWA, Vanni P, Maggi S, Perissinotto E, Grigoletto F, Amaducci L, Inzitari D. (2000): Parkinson’s disease and parkinsonism in a longitudinal study: Two-fold higher incidence in men. ILSA Working Group. Italian Longitudinal Study on Aging. Neurology 9, 1358-1363.
• Bükki J, Nübling G, Lorenzl S. (2014): Managing Advanced Progressive Supranuclear Palsy and Corticobasal Degeneration in a Palliative Care Unit: Admission Triggers and Outcomes. American Journal of Hospice and Palliative Medicine. https://doi.org/10.1177/1049909114565110.
• Cerri S, Mus L, Blandine F. (2019): Parkinson’s Disease in Women and Men: What’s the Difference? Journal of Parkinson’s Disease 9 (2019) 501–515. doi: 10.3233/JPD-191683.
• Dahodwala N, Shah K, He Y, Wu SS, Schmidt P,Cubillos F, Willis AW (2018): Sex disparities in access to caregiving in Parkinson disease. Neurology 90, 48-e54.
doi: 10.1212/WNL.0000000000004764 .
• Dexter DT, Jenner P (2013): Parkinson disease: From pathology to molecular disease mechanisms. Free Radic Biol Med 62, 132-144, doi: 10.1016/j.freeradbiomed.2013.01.018.
• Enders D, Balzer-Geldsetzer M, Riedel O et al. (2017): “Prevalence, duration and severity of Parkinson’s disease in Germany: a combined meta-analysis from literature data and outpatient samples,” Europ Neurol, 78(3-4):128–136. doi: 10.1159/000477165.
• Goy E R, Bohlig A, Carter J. Ganzini L. (2013): Identifying Predictors of Hospice Eligibility in Patients with Parkinson Disease. American Journal of Hospice and Palliative Medicine. ttps://doi.org/10.1177/1049909113502119
• Gries CJ, Engelberg RA, Erin K. Kross, Doug Zatzick, Elizabeth L. Nielsen, Lois Downey J, Randall Curtis, Predictors of Symptoms of Posttraumatic Stress and Depression in Family Members After Patient Death in the ICU, Chest, Volume 137, Issue 2, 2010, 280-287, https://doi.org/10.1378/chest.09-1291.
• Lokk J, Delbari A. Clinical aspects of palliative care in advanced Parkinson's disease. BMC Palliat Care 2012 ,11:20. Published 2012 Oct 25. doi:10.1186/1472-684X-11-20.
• Lorenzl S, Nübling G, Perrar KM, Voltz R. (2013): Palliative treatment of Chronic neurological disorders. In: James L, Bernat H, Beresford R. (ed.) (2013): Ethical and Legal Issues in Neurology 118: 133-139.
• Nübling S, Schuberth M, Feldmer K, Giese A, Holdt L M, Teupser D, Lorenzl S. (2017): Cathepsin S increases tau oligomer formation through limited cleavage, but only IL-6, not cathespin S serum levels correlate with disease severity in the neurodegenerative tauopathy progressive supranuclear palsy. Experimental Brain Research 235: 2407-2412.
• Oliver DJ, Borasio GD, Caraceni A, et al. A consensus review on the development of palliative care for patients with chronic and progressive neurological disease. Eur J Neurol. 2016;23(1):30‐38. doi:10.1111/ene.12889.
• Oliver DJ, Veronese S. Specialist palliative care for Parkinson`s Disease. Ann Palliat Med 2020;9(Suppl 1):52-62. http://dx.doi.org/10.21037/apm.2019.12.01.
• Papapetropoulos S, Mash D C (2005): Psychotic Symptoms in Parkinson`s disease. Journal of Neurol 252:753-764.
• Petrinec AB, Mazanec PM, Burant CJ, Hoffer A, Daly BJ. (2015): Coping Strategies and Posttraumatic Stress Symptoms in Post-ICU Family Decision Makers. Crit Care Med.;43(6):1205‐1212. doi:10.1097/CCM.0000000000000934.
• Snell K, Pennington S, Lee M, Walker R. (2009): The place of death in Parkinson`s disease. Age and Ageing 38(5): 617-619. doi: 10.1093/ageing/afp123.
• Lim SY, Tan AH, Ahmad-Annuar A, Klein C, Tan LCS, Rosales RL, Bhidayasiri R, Wu YR, Shang HF, Evans AH, Pal PK, Hattori N, Tan CT, Jeon B, Tan EK, Lang AE. Parkinson's disease in the Western Pacific Region. Lancet Neurol. 2019 Sep;18(9):865-879. doi: 10.1016/S1474-4422(19)30195-4.
• Ben-Joseph A, Marshall CR, Lees AJ, Noyce AJ. Ethnic Variation in the Manifestation of Parkinson's Disease: A Narrative Review. J Parkinsons Dis. 2020;10(1):31-45. doi: 10.3233/JPD-191763.

Assessment

• Presentation (slides)
• Video component
• Reading materials