Abstract
Objective: To assess the current practice regarding patients with Parkinson’s disease (PD) in palliative care units and to identify barriers to patients’ referral and optimal care.
Background: Palliative care is now receiving a growing interest in PD. However, knowledge on the overall patterns of the end-of-life of PD patients and on the current practice in palliative care units is scarce. Understanding the barriers surrounding palliative care in PD among medical professionals is critical to identify levers for action and improve patients’ access to palliative care.
Design/Methods: A survey was conducted among the 13 palliative care units of Brittany during the autumn of 2019. The aim was to meet in person with medical staff (physicians and nurses) to better describe local practice, using qualitative questionnaires (e.g. knowledge about the specificities of PD patients and PD medications, frequency of PD patients’ referral, pharmacological and non-pharmacological strategies).
Results: 9 out of 13 palliative care units positively responded to our request. The relevance of palliative care in PD patients was acknowledged by most of the professionals, despite the low frequency of such hospitalizations in their units. PD patients were indeed referred to palliative care units for reasons other than PD, such as cancer. Many professionals reported a lack of knowledge in managing PD patients, the main concerns being pain management, rigidity, psychiatric disorders and medication adjustments. Training sessions on the specificities and needs of PD patients were requested to improve the quality of end-of-life care.
Conclusions: Currently, PD patients’ needs are not always identified and/or satisfied in palliative care units (pain & medication management). There is a need to provide additional training on PD to palliative care units, and to develop standardized core documentation. Early introduction of palliative care options to physicians (neurologists, general practitioners, geriatricians) and patients would be relevant to optimize coordination, increase awareness and facilitate communication.
Disclosure: Dr. Auffret has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Britannia, EverPharma. Dr. Auffret has received research support from France Développement Electronique (FDE), Homeperf, LVL. Dr. Keromnes has nothing to disclose. Dr. Robert has nothing to disclose. Dr. Morel has nothing to disclose. Dr. Verin has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Britannia. Dr. Verin has received research support from Homeperf, LVL, FDE.
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