Objective: (1) Assess patients’ perceptions and knowledge of palliative and end-of-life care in PD; (2) evaluate (i) whether patients discuss these topics with healthcare professionals and/or their families, (ii) and whether they make use of existing French legal procedures (advance directives, trusted support person).

Background: Palliative care is receiving a growing interest in Parkinson’ disease (PD). However, few studies have examined the perceptions and knowledge of Parkinson’s patients Parkinson’s disease on palliative and end-of-life care. A better understanding of patients’perspective is critical to identify levers for action and improve patients’ access to palliative care resources, A small study led by our group last year on 60 French PD patients highlighted a practice gap.

Method: Anonymous online questionnaire (March to June 2023), with the survey link sent by email to participants through French PD patients’ associations and healthcare professionals (neurologists & home healthcare provider nurses)

Results: 200 patients (48% female, mean age 70 years old) responded to the survey. Most patients did not consider themselves well informed about palliative care (62,5%). They never discussed palliative care with their medical team (85%) nor with their family (55.5%), even though they felt they can benefit from palliative care palliative care because of their illness (86.5%). Most patients had already thought about about the end of life (EOL, 74.5%) and find it frightening (61.5%).

They never discuss about EOL with their medical team (72.5%), but do have end-of-life discussions with their family (66%). They have never received any documentation from professionals (94.5%). 70% of patients are aware of the existence of an end-of-life law. Only a small number of patients have designated a trusted support person (56%) or written up their advance directives (31%), even though they are unanimously convinced of the value of both of these legal procedures (96%).

Conclusion: French PD patients are not properly informed about palliative care. 

Neurology teams need to invest in this area in order to meet patients’ needs

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MDS Abstracts - https://www.mdsabstracts.org/abstract/palliative-and-end-of-life-care-in-parkinsons-disease-french-patients-perceptions-and-knowledge/