Today we have launched a vital resource for babies expected to have very short lives - The Perinatal Pathway for Babies with Palliative Care Needs. 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. It can be downloaded for free
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, we have 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.
Lizzie Chambers, Development Director at Together for Short Lives, says:
“We hope that this updated care pathway will help all professionals working within fetal, maternity and neonatal services to offer families timely choices in their care. Perinatal palliative care is changing rapidly. Medical advances mean that babies with serious illnesses are identified earlier – often antenatally – and ever higher levels of technological support in the Neonatal Intensive Care Unit means that these very sick babies often survive much longer.”
“Our pathway is here to support staff working in these highly pressurised environments to help families when it’s recognized that further treatment will not save their baby’s life. It provides a framework to help them to work with families at this most difficult of times. Our ambition is for parents to be supported to spend quality time with their baby, to build memories and to cherish the last hours, days or weeks of their baby’s life.”
Caroline Lee-Davey, Chief Executive of Bliss added:
“On behalf of Bliss, the national charity for babies born premature or sick, I am pleased to welcome and support this updated care pathway for babies with palliative care needs. Importantly, this pathway is grounded in the Together for Short Lives core principle that “parents shall be acknowledged as the primary carers and involved as partners in all care and decisions involving their baby”. While every baby and their family’s journey will be different, this is the thread that binds all their experiences together, and is at the heart of how everything in this pathway should be read and applied in practice: every communication, every decision, every care plan, and every service.”
Fauzia Paize, Consultant Neonatologist, Liverpool Women’s NHS Foundation Trust, a key contributor to the pathway said
“This pathway will be of real value to professionals working with babies who are diagnosed with life-limiting conditions before during and after they are born. It sets out a framework for managing the care of these babies whether they are in a neonatal intensive care unit or if their care transfers to another location such as home, community or a children’s hospice. It emphasises what can be achieved when working together across multi-disciplinary teams and when services provide the best response to families during a distressing and uncertain time.”
The Perinatal Pathway for Babies with Palliative Care Needs offers professionals clear guidance from the point of recognition that a baby has a life-limiting condition; ongoing care of the baby throughout their short life; end of life planning; and continuing care for the family into bereavement. The pathway is endorsed by BAPM (British Association of Perinatal Medicine), Bliss, the charity for babies born premature or sick and Child Bereavement UK.
This pathway is one of a suite of care pathways from Together for Short Lives which includes the Core Care Pathway, the Extubation Care Pathway and Stepping Up - a revision of the former Transition Care Pathway. It can be downloaded for free