Sharing care at the End of life for adolescent patients with neuro-disability: A case series

Sharing care at the End of life for adolescent patients with neuro-disability: A case series

Elverson J; Aspey H; Bond E; Mackerness C; Hoskins R; Shiell A

BMJ Supportive and Palliative Care

2023

child; Adolescent; adult; female; hospital admission; human; male; palliative therapy; patient care; terminal care; young adult; clinical article; hospital discharge; groups by age; adolescent; deterioration; conference abstract; learning; adulthood; case study; neurodisability; bereavement support; community health nursing; family support; health hazard

Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to adult services; for others however, reaching adulthood coincides with a significant deterioration in their health. Identifying the best team to support the patient in this situation can be controversial. Community and hospital adult palliative care teams may have an important role to play in supporting these patients, yet clinicians may lack experience working with this age group or managing the symptoms associated with paediatric neurodisability. We present reflections from a series of 6 young adults who received shared-care from adult and paediatric palliative teams and raise discussion about the strengths and learning needs of the different teams involved. Intervention Over a period of 2 years, patients who were between the age of 15 and 19 years and experiencing a significant deterioration in their health were referred to the children's palliative care team for the North East North Cumbria region. Where appropriate, the children's team identified a local adult palliative care team and established a model of shared-care with this team. Findings Across the region 3 adult hospital palliative liaison teams and 4 adult community palliative care teams were involved in shared end of life care. Cross-team debriefs identified benefits including * Improved continuity of care * Access to out of hours support * Avoiding hospital admission/Safe discharge planning * Confidence with medication for symptom management * Access to local family support and bereavement services * Building relationships for future joint working * Support for adult and children's community nursing teams Conclusion Sharing end of life care between adult and paediatric palliative care services can improve the experience of young adults and their families.

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August List 2023