A huge proportion of people with Parkinson’s disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson’s disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as =80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup ‘neuro-palliative care’ in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.
Parkinson's disease (PD) is a progressive neurodegenerative movement disorder with an increased morbidity and mortality. People with PD (PwP) may suffer from decreased quality of life due to various motor and nonmotor symptoms. To a huge proportion, PwP have written an advance directive (AD); however, the content of these forms in regard to PD-specific complications is unclear. The aim of this study was to qualitatively and quantitatively analyze ADs of PwP in Germany. ADs of PwP were analyzed in a German sample of members of the German PD patient association. Participants completed a questionnaire about their AD and sent a copy of their AD to the study center for detailed analyses. ADs were qualitatively and quantitatively analyzed for general and PD-specific aspects and usefulness concerning treatment decisions. 82 PwP were included in the study, and in 76, an AD could be analyzed. Family members, notaries, lawyers, and general physicians mainly counseled writing of the ADs. 4 PwP consulted a neurologist to establish a specific AD for PD. In the analysis, ADs displayed a good specificity for general aspects, but they were unspecific to PD in the vast majority of cases. PwP should be encouraged to create an AD early in their disease and adapt it in the course of the disease. PD-specific aspects for an AD could be details in relation to dopaminergic therapies at the end of life, management of non-oral advanced therapies, neuropsychiatric symptoms, dementia, and swallowing disturbances.
Background: Parkinson's disease (PD) is the second most frequent neurodegenerative disease of the elderly. Patients suffer from various motor and non-motor symptoms leading to reduced health-related quality of life (HRQOL) and an increased mortality. Their loss of autonomy due to dementia, psychosis, depression, motor impairments, falls, and swallowing deficits defines a phase when palliative care interventions might help to sustain or even improve quality of life.
Objective: The aim of this study was to investigate the current status of palliative care implementation and quality of life in a local cohort of advanced PD patients in order to frame and improve future care.
Methods: 76 geriatric patients with advanced idiopathic PD meeting the inclusion criteria for palliative care interventions were clinically evaluated by neurological examination using Movement Disorders Society Unified Parkinson's Disease Rating Scale, Barthel Index, Montreal Cognitive Assessment Test, and a structured interview concerning palliative care implementation.
Results: HRQOL is severely reduced in our cohort of geriatric advanced PD patients. We found motor deficits, impairment of activities of daily living, depression, and cognitive decline as most relevant factors determining decreased HRQOL. Only 2.6% of our patients reported present implementation of palliative care. By contrast, 72% of the patients indicated an unmet need for palliative care.
Conclusion: Quality of life is dramatically affected in advanced PD patients. However, we found palliative care to be implemented extremely rare in their treatment concept. Therefore, geriatric patients suffering from advanced PD should be enrolled for palliative care to provide adequate and holistic treatment which may improve or sustain their quality of life.