Perinatal Pathway for Babies with Palliative Care Needs

The Perinatal Pathway for Babies with Palliative Care Needs is to support professionals to help families with seriously ill babies have more choice in their child’s care and the best experience and memories of their baby, no matter how short their life may be.

The pathway has been developed by Together for Short Lives with expert input from leading ethicists and clinicians working across obstetrics, antenatal and neonatal care, and children’s palliative care.

The death of a baby, in the first hours, days, weeks or months of life, is a tragedy. The majority of child death happens in the first 28 days of life, and on average there are 2,109 deaths each year from causes likely to require palliative care with 98% of all deaths occur in a hospital setting.

If a life-threatening condition is identified in pregnancy it can be helpful to introduce elements of palliative care in the antenatal period – to enable families to get the support that they need to plan for the future care of their very poorly baby. That’s why, Together for Short Lives has developed a dedicated care pathway from the point of recognition that a baby has a life-threatening condition and may not survive for long after birth and through their neonatal period. 

We want to ensure that every parent, coming to terms with the news that their baby may not survive or will have a very short life, receives the best possible care and support whether they are in  hospital, at home or in a children’s hospice. The loss of a much-longed for baby is unbearable. Some families may only have a few days or hours with their baby – and it’s vital that they can spend as much quality time as possible close to their baby. We want to ensure that families dealing with this heart-breaking news have the best opportunity to make lasting memories with their child, even if their baby only lives a matter of moments.

The new care pathway is designed to support all professionals working in fetal medicine, anetental, neonatal and maternity services to deliver sensitive and timely support at this heart-breaking time, enabling families to spend time with their baby, bonding and building memories, in a more home-like environment, and with as little technologically dependent care as possible. 

It encourages professionals to work together across multidisciplinary teams and local services to provide the best response to families during a distressing and uncertain time. For example, by building relationships with local children’s hospices and palliative care charities that are increasingly supporting families and their babies at the end of their short life. Better understanding of, and good relationships with local services could mean families are offered more choice, especially when a baby may only live a few hours or days.