Perinatal palliative care refers to palliative care which is provided around the time of a baby’s birth; this includes before a baby is born (antenatal palliative care) and in the period after a baby is born (neonatal palliative care).
Palliative care for children focuses on enhancing the quality of life of the baby or child and providing support for the whole family. It is an active approach to care which starts from the time a baby is diagnosed with a life-limiting condition (a condition which means they may not survive). Importantly, palliative care can be delivered alongside treatments which aim to treat or cure a condition. Although some babies who receive palliative care will sadly die, many will also go on to survive and may no longer require palliative care support.
This website aims to be a resource for both families and professionals explaining what perinatal palliative care is and how it can help to support babies and their families. There are different sections with information about both antenatal and neonatal palliative care.
Perinatal palliative care can be provided in a number of different places, and the point at which the need for palliative care support is recognised will be different for different families.
Perinatal palliative care can be provided by any of the healthcare professionals involved in a baby or a family’s care and does not always require the involvement of specialist teams. Here are some of the healthcare professionals who may be involved in providing palliative care.
Paediatric palliative care teams have expertise working with babies and children with life-limiting or life-threatening illness and their families. Teams will usually be led by a paediatric palliative medicine consultant and may include clinical nurse specialists as well as pharmacists, psychologists, and social workers. These teams work across hospital, hospice and community settings and support other healthcare professionals to care for children with life-limiting conditions.
Neonatal doctors who specialise in the medical care of children and/or babies work in a team that is led by a consultant paediatrician or neonatologist. Neonatal nurses support parents in providing most of the day-to-day care for babies admitted to a neonatal unit.
A mother or her unborn baby may require specialised care for various reasons and may therefore be referred to a fetal medicine unit. Fetal medicine teams will include experienced consultants and specialist midwives.
Bereavement midwives are specially trained to care for and support women and families who experience a miscarriage, stillbirth or whose baby sadly dies during or shortly after birth.
Children's hospices are usually staffed by a wide range of professionals and volunteers who work together to provide care to children and their families. Staff may include doctors, nurses, midwives, physiotherapists, social workers, therapists (play, music and art), family link workers as well as administrative and support staff.
Children’s community nurses provide direct nursing care to children at home. They often work to coordinate care for children with complex care and medical needs.
GPs play a crucial role in supporting care for children and families, particularly if a baby or child is being cared for at home.
Doctors specialising in community child health work with different groups of children, including those with developmental disorders, disabilities and complex health care needs.
