Session Information
Date: Monday, September 23, 2019
Session Title: Quality of Life
Session Time: 1:45pm-3:15pm
Location: Les Muses Terrace, Level 3
Objective: The aim of the research was to determine the preferences of patients with Parkinson´s disease (PD) and their family members for the place of end-of-life care and to compare them according to age, marital status, gender, education and the duration of the disease.
Background: Patients with PD often die in hospitals that are not usually the optimal place for terminal care [1]. According to current research, people would prefer to die especially at home [2,3]. However, the preferences in patients with PD are not often identified.
Method: The sample consisted of 134 participants, patients with PD (mean age: 71.4 year) and their family members (mean age: 60.3 year). The preference for the place of end-of-life care was assessed with APND-EOLC questionnaire (The Attitudes of Patients with PND to End-of- Life Care) – area IV – questions determining views of the care system (5 items).
Results: Patients (71.0%) as well as family members (59.1%) most often chose the place of end-of-life care at home. The stay in a hospice was chosen only by 11.6% patients and 16.7% family members. The others wish to die in a hospital or in other health and social institution. The difference between patients and family members was statistically significant (p=0.049), patients more often wished to die at home. No statistically significant differences were found in the preference of the place of death by age, marital status, gender, education, and the duration of the disease in patients and family members.
Conclusion: Exploring the preference for place of death can help in end-of-life care planning for patients with PD. Also important is the communication about the preference of the place of death between the patient, their family members and the doctor.
References: 1. Moens K, et al. Place of death of people living with Parkinson´s disease: a population-level study in 11 countries. BMC Palliative Care. 2015;14:28. 2. Robinson, J., Gott, M., Inglenton, Ch. Patient and family experiences of palliative care in hospital: What do we know? An integrative review. Palliative Medicine. 2013;28(1):18-33. 3. Klinger, Ch. A. et al. Barriers and facilitators to care for the terminally ill: A cross-country case comparison study of Canada, England, Germany, and the United States. Palliative Medicine. 2014;28(2): 111-120.
To cite this abstract in AMA style:
R. Kozáková, R. Bužgová, M. Bar, M. škutová, P. Ressner, P. Bártová. The Preferences of Patients with Parkinson’s Disease and their Family Members for Place of End-of-Life Care [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/the-preferences-of-patients-with-parkinsons-disease-and-their-family-members-for-place-of-end-of-life-care/. Accessed September 7, 2024.« Back to 2019 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/the-preferences-of-patients-with-parkinsons-disease-and-their-family-members-for-place-of-end-of-life-care/