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 Thirty 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 5 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 counseling 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‐centered 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. Clinical relevance The family‐centered approach to care, from a broad, biopsychosocial perspective means that hospices make an important contribution to both the clinical needs of babies, and psychological needs of families antenatally, in the neonatal period and after death.

‘You have a little human being kicking inside you and an unbearable pain of knowing there will be a void at the end’: A meta-ethnography exploring the experience of parents whose baby is diagnosed antenatally with a life limiting or life-threatening condition

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Enhancing communication confidence and competence: using simulation-based education in perinatal palliative care

“…Roleplay in SBS enhances the experience of learners further; incorporating actors as family members in SBS scenarios can aid the sense of fidelity3 and provide nurses with the opportunity to practice projecting empathy and compassion essential elements of perinatal palliative care, recognised by both parents1 and healthcare professionals 5…”

Culturally sensitive neonatal palliative care: a critical review

“…A more recent survey of UK children’s hospices ( n = 30) found that the majority did not collect specific data on the number of perinatal referrals, but for the 12 services that did, the majority had seen an increase in referrals over the last 5 years. 83 Although this suggests that referrals to hospices are increasing, the small sample size makes it difficult to extrapolate the findings and it is possible that families may still be missing out on the holistic palliative care services that hospices can provide.…”