Palliative and end-of-life care in Parkinson’s disease : a survey of patients’ perceptions and knowledge in France
Manon Auffret1, Guillaume Robert2, Matthieu Béreau4, Marc Verin3
1R&D, Société France Développement Electronique (FDE), 2Palliative Care, 3Neurology, CHU Hopital Pontchaillou, 4Neurology, CHU Besançon
Objective:
To evaluate patients’ perceptions and knowledge regarding palliative and end-of-life care in Parkinson’s disease
Background:
Palliative care is receiving a growing interest in PD. Little is known, however, about PD patients’ perceptions, knowledge or experience. Until now, no study has been carried out in France to assess (i) if PD patients talk about these topics with healthcare professionals or their families, (ii) or if they use the available legal documents (advance directives and trusted person). Understanding the current situation is critical to identify levers for action and improve patients’ access to palliative care resources.
Design/Methods:
Anonymous online questionnaire (available for 10 days), with the survey link sent by email to participants through various PD patients’ associations (France Parkinson, APIV) and home healthcare provider nurses
Results:
60 patients (51.7% women, 56.7% over 70 years old) voluntarily completed the survey. The majority of patients do not consider themselves well informed about palliative care (68.3%). They never discuss palliative care with their medical team (86.7%) nor their family (68.3%). However, they think they can benefit from palliative care because of their illness (65%) and want more information on this subject (58.3%). Most patients have already thought about the end of life (71.%) and find it scary (68.3%). They never have end-of-life discussions with their medical team (80%) or their family (51.7%). They have never received any documentation from professionals (58.3%). Only 51.7% are aware of the existence of an end-of-life law. Although they consider it important, few patients have already designated their trusted person (38.3%) or written their advance directives (15%).
Conclusions:
This small survey highlights a practice gap. PD patients are not well informed about palliative care services. Medical teams (including neurology) need to take ownership of the subject and help patients and their families talk about these issues, even if they seem frightening.