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Care pathway for babies expected to have very short lives

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A perinatal care pathway has been developed by a children’s palliative care charity, with a focus on supporting clinicians and improving choices for families.

The Perinatal Pathway for Babies with Palliative Care Needs was launched today by the charity Together for Short Lives.

“Our ambition is for parents to be supported to spend quality time with their baby”

Lizzie Chambers

It is designed to support professionals to help families 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 free pathway has been developed with expert input from leading ethicists and clinicians working across obstetrics, antenatal and neonatal care, and children’s palliative care, said the charity.

It noted that the majority of child deaths happen in the first 28 days of life. On average, there were 2,109 deaths each year from causes likely to require palliative care, with most occurring in hospital.

The pathway starts 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.

The charity highlighted that if a life-threatening condition was identified in pregnancy it could be helpful for parents to introduce elements of palliative care in the antenatal period.

“This pathway will be of real value to professionals working with babies diagnosed with life-limiting conditions”

Fauzia Paize

It said the new care pathway was designed to support all professionals working in foetal medicine, antenatal, neonatal and maternity services to “deliver sensitive and timely support”.

The aim being to enable families to spend time with their baby, bond and build memories, in a more home-like environment, and with as little technologically dependent care as possible.

The pathway also encourages professionals to work together across multi-disciplinary 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, noted the charity.

Lizzie Chambers, development director at Together for Short Lives, said: “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 to help families when it’s recognised that further treatment will not save their baby’s life,” she said. “It provides a framework to help them to work with families at this most difficult of times.”

She added: “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.”

Bliss

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Caroline Davey

Fauzia Paize, a consultant neonatologist at Liverpool Women’s NHS Foundation Trust who helped develop 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 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,” she said.

The pathway has also been endorsed by the British Association of Perinatal Medicine and Bliss, the charity for babies born premature or sick, and Child Bereavement UK.

Bliss chief executive Caroline Lee-Davey said: “Importantly, this pathway is grounded in the core principle that ‘parents shall be acknowledged as the primary carers and involved as partners in all care and decisions involving their baby’.”

The new pathway joins other guides from Together for Short Lives, including the Core Care Pathway, the Extubation Care Pathway and Stepping Up – a revision of the former Transition Care Pathway.

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