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Eighty minutes and a lifetime of memories

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A family was able to spend precious time at home with their baby boy as he received end of life care from Becky Davis, a community children’s nurse, and the Gloucestershire Community Children’s Nursing Team.

The team received a referral from Bristol Children’s Hospital hoping to enable the parents of a two day old baby boy, born with such profound cardiac abnormalities that there were no treatment options, to bring him home to receive end of life care surrounded by his family.

The challenge was in ensuring that the correct resources and support were promptly available to facilitate a positive experience for the baby and family. The team liaised with the paediatric intensive care unit (PICU) consultant and nurse who would transfer the baby home, the local paediatrician and palliative care consultant and the family’s GP to be able to provide nursing care and support to the baby and his family 24 hours a day.

Mum and baby arrived home within six hours of the initial referral. Becky and the GP were already there meeting Dad and the siblings. After the parents and baby were settled, care handed over and other colleagues left, Becky remained with the family and facilitated conversations, ensuring questions were answered and information given regarding what may happen over the next hours or days and immediately afterwards.

The parents and siblings were able to cuddle the baby but within a short time his condition deteriorated further and he died peacefully in his parents’ arms. Becky stayed with the family for a time afterwards, liaising with the GP and undertakers and, after discussing possible options, enabled the parents to keep their baby with them at home overnight.

Becky’s support for the family continued the following day and afterwards, including taking hand and foot prints and a lock of hair which the parents felt unable to do, working with the siblings’ school to ensure their on-going support and contacting a local charity to support the family.

“Ultimately, it was the commitment and flexibility of the team, together with the excellent communication between everyone involved, that enabled this baby to spend just 80 special minutes at home”, said Becky, “The benefits for the patient and family are enormous and the team has had a positive impact on the way in which the family are coming to terms with their loss; his Mum said later that she will be forever grateful for that one precious hour.”

Liz Fenton, Director of Nursing and Quality, Gloucestershire Care Services NHS Trust, added: “Every aspect of the 6Cs is woven throughout this patient story, from the commitment and competence of all staff members from the various organisations involved, to the communication, courage and compassion demonstrated particularly by Becky, and not least the care and courage of the baby’s parents to ensure he had a peaceful death.”

The CCNT has regularly provided end of life care, but this was the first time a discharge was arranged so quickly. On this occasion all of the necessary medications were provided by the PICU team. The learning from reflecting on this episode of care has further strengthened the team’s working relationships with their palliative care consultant and processes have been put in place around the prescription and supply of medications for patients at the end of life.

Marie Batey, Head of Acute and Older People at NHS England, said: “This story touched me deeply and I know that many others will also be moved by this family’s experience, and all the ways in which Becky’s team worked smoothly and swiftly with others to provide the most compassionate of care. It has shared for us the ways in which members of staff apply the 6Cs in reaching out to people in unimaginably difficult situations.”


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