Date: Thursday, June 23, 2016
Session Time: 12:00pm-1:30pm
Location: Exhibit Hall located in Hall B, Level 2
Objective: To ask whether best supportive care might be more suitable for patients with Parkinson’s disease (PD) and Parkinsonian syndromes and their family than palliative care.
Background: Patients with PD and Parkinsonian syndromes like PSP, MSA or CBD and their families suffer a lot at the late phase of the disease and palliative care is strongly needed. However, palliative care units and hospices do not frequently have admissions of these patients. Furthermore, disease trajectories are often difficult to determine and only a few research projects investigate the late phase.
Methods: Description of the late phase and the dying process of patients with PD and Parkinsonian syndromes. Patients have been treated by a team of neurologists, social worker and psychiatrist with palliative care expertise.
Results: We have retrospectively evaluated the late phase of these patients and have frequently documented high symptom load. Beside increased rigidity and spasticity there have been swallowing difficulties with pulmonary infections, spasms and convulsions of various origins as well as epileptic seizures and dyspnoe. Pain has not been a major problem. Death and dying has often been a waiver decission and needed a strong involvement oft he relatives. The care in the last phase would best applied for a time over the last two years involving a multiprofessional and interdisciplinary team.
Conclusions: Patients with movement disorders and their relatives need strong and early involvement of best supportive care over at least the last 2 years of the disease. The care model should be applied as a concerted action within an multiprofessional team with palliative care knowledge.
To cite this abstract in AMA style:S. Lorenzl, C. Richinger, C. Schmotz, G. Nübling. Best supportive care or palliative care for late stage Parkinsonian syndromes? [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/best-supportive-care-or-palliative-care-for-late-stage-parkinsonian-syndromes/. Accessed March 4, 2024.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/best-supportive-care-or-palliative-care-for-late-stage-parkinsonian-syndromes/