Changing landscape of paediatric palliative care

Changing landscape of paediatric palliative care

Nallapeta N; Hills M

Developmental Medicine and Child Neurology

2018

human; child; female; male; palliative therapy; diagnosis; hospice; adult; major clinical study; retrospective study; conference abstract; young adult; epilepsy; mortality; morbidity; landscape; catering service; life event; medical care; muscle spasm

Introduction: Advancement in medical science and better health care has led to increased survival of children with complex neurodisability (cerebral palsy, neuromuscular, neuro-metabolic, and genetic disorders). Paediatric palliative care has traditionally been associated with looking after children with oncological conditions. This study looked into the role of hospices in children and young adults with complex neurodisability. Patients and method: A retrospective review of electronic case records looking at all admission (3 months period) to Martin House Children's Hospice (provides family-led care for families from across West, North, and East Yorkshire) was performed. Results: There were 192 admissions of children and young adults of which 180 (93.75%) admissions (152 children with 28 repeat admission) had complex neurodisability conditions. Thirty-five percent had some medical input during their stay. Of these, 3.3% were admitted to hospice for symptom control reason alone. Reason for medical review was varied and included specialist advice like spasm/epilepsy control. Fewer than 2% of children were end of life admissions. Although the neurodisability diagnosis varied, symptomatology and end of life events were common. Conclusion: Children with complex neurodisability with life limiting and life-threatening conditions have varied clinical needs. The role of hospice and palliative care is now shifting towards catering for morbidity rather than mortality in children. Hospice has a significant role in initiating and continuing specialist medical care and not just palliative medicine. Collaborative working pattern of neurodisability specialist and palliative care teams is essential to provide best care for these groups of children.

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August 2018 List