End Of Life Care In Paediatric Neurodegenerative Disease: A Regional Experience


End Of Life Care In Paediatric Neurodegenerative Disease: A Regional Experience


Donald A; Kauffmann L; Ram D; Vassallo G


Developmental Medicine And Child Neurology




Degenerative Disease; Terminal Care; Case Study; Child; Clinical Article; Controlled Study; England; Family; Hospital; Human; Myoclonus; Neurodegenerative Diseases; Neurology; Only Child; Palliative Care; Palliative Therapy; Personal Experience; Rare Disease; Seizure; Social Welfare; Symptom; Terminal Care


Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of life care to this patient population. To highlight the unique and specific challenges of end of life care in neurodegenerative disease. Introduction: New Children and Young Persons Advanced Care Planning Guidance has been introduced in 2015. The aim is to improve collaborative working between health care services for children and to create a clear, safe and effective platform from which to provide palliative care. In view of this, consideration has been given to the experience of children and families with neurodegenerative disease in different parts of the Northwest of England. These children, like many other cohorts of children with rare or chronic disease, have unique and specific needs. Methods: This case-series describes the end of life care provided to families in different regions of the Northwest. Case notes of six patients who died between 2013 and 2015 and who received input from the Paediatric Neurology Department at Royal Manchester Children's Hospital, were reviewed. All patients had a neurodegenerative disease with seizure or myoclonus as a significant symptom. Case notes were reviewed systematically with use of a developed proforma. Results: The review showed the most effective end of life care varied by geographical region likely reflecting provision of community services. Those patients with access to dedicated and engaged community and tertiary centre teams who worked in collaboration had the most effective end of life experience. Conclusions: Children with neurodegenerative disease do have unique and specific end of life needs, however, fundamental to effective end of life care is a care multi-agency cohesive and accessible team.


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Donald A; Kauffmann L; Ram D; Vassallo G, “End Of Life Care In Paediatric Neurodegenerative Disease: A Regional Experience,” Pediatric Palliative Care Library, accessed March 3, 2024, https://pedpalascnetlibrary.omeka.net/items/show/10699.