The role of children’s hospices in perinatal palliative care and advance care planning: the results of a national British survey

Abstract

Introduction: perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or life-threatening condition. Little is understood about the role of children’s hospice care and how it contributes to effective perinatal palliative care. Design: The study aims to answer the question ‘what is the role of children’s hospices in the provision of perinatal palliative care and advance care planning in the United Kingdom?’ Methods: An electronic survey was sent to all 54 children’s hospices in the United Kingdom between May and June 2022. Results: 30 hospices responded, representing 54% of the sector. All regions of all four counties are represented. Numbers of referrals to hospices for perinatal palliative care have increased significantly over the last five years. Hospices provide a range of services for families and babies, usually from the point of diagnosis or recognition of a life-limiting or life-threatening condition, underpinned with counselling and emotional support. Hospices worked with a range of professionals and services, most commonly fetal medicine and neonatal services. Advance care plans were an important element of effective perinatal palliative care, strengthening parent-professional and interprofessional relationships. Conclusion: Children’s hospice services play an important and growing role in the perinatal care of babies and families following the diagnosis or recognition of a life limiting or life-threatening condition. The family centred approach to care, from a broad, biopsychosocial perspective means that hospices make a unique and meaningful contribution to both the clinical and psychological needs of families.