“Including parents in the decision-making isn’t the icing on the cake, it is the cake.” – Child Bereavement UK’s Neonatal Palliative and End of Life Care Conference.
A bereaved couple urged healthcare professionals to engage with parents with greater compassion and understanding, at a conference organised by Child Bereavement UK. The couple shared the story of their baby daughter who died when she was just nine-and-a-half-weeks old.
Addressing professionals from the health sector at Child Bereavement UK’s 9th Neonatal Palliative and End of Life Care Conference about their experience in a neonatal intensive care unit, the couple said:
“Nothing can prepare you for these moments in your life. What we have experienced has made us realise that what professionals say or do stays with you for the rest of your life.”
The conference, which focused on helping professionals to build positive relationships with parents, was held at the Cavendish Conference Centre in London, attended by 200 healthcare professionals, including midwives, neonatal consultants and nurses. Delegates included twenty student midwives and twenty-four neonatal nurses who were sponsored by bereavement charities Abigail’s Footsteps and 4Louis respectively.
The event, on 5th February, focused on the challenges faced by families and professionals in neonatal units, including difficult conversations, breaking bad news and the need for good communication.
Neil Marlow, Professor of Neonatal Medicine, and Dr Katie Gallagher, Honorary Research Associate, both from University College London, spoke about parental involvement in neonatal critical care decision-making. Professor Marlow gave a summary of an analysis of conversations between healthcare professionals and parents in neonatal units and outlined ways in which healthcare professionals can engage more positively with families.
Dr Laura de Rooy, Consultant Neonatologist at St. George’s NHS Foundation Trust, gave her personal perspective on shared decision-making. She encouraged healthcare professionals to see parents not as visitors but as an important part of the team, saying: “Including parents in the decision-making isn’t the icing on the cake, it is the cake.”
The afternoon session included a panel discussion chaired by Vic Robinson, retired consultant obstetrician and former Chair of Trustees for Child Bereavement UK. Mr Robinson was joined on the panel by Professor Marlow and Dr Gallagher together with: Sarah Barclay, Director of the Medical Mediation Foundation; Jennifer Deeney, Head of Neonatal Nursing, Liverpool Women’s Hospital; and Lisa Leppard, Neonatal Family Care Sister, University Hospital Southampton.
The panel discussed ways in which healthcare professionals can communicate more effectively with parents, and the importance of empathy and understanding. Jennifer Deeney said:
‘We need to remember that we chose to work in this environment. But parents never chose to be in an intensive care unit with their baby.”
Speaking about the conference, Jean Hartley, a neonatal nurse from John Hopkins Hospital, Baltimore, Maryland, USA said:
“The things that have been the most powerful that I’d like to bring back to my work are the subtleties, like the things the couple spoke about, things that had been said that were hurtful and not taken well. And thinking about the language we use when we’re talking to families, and that there are no difficult parents, there are difficult situations. It really informs the culture of your unit or ward, the way you talk about this sort of thing.”
Photo: Panel (from left to right) Professor Neil Marlow, Dr Katie Gallagher, Jennifer Deeney, Lisa Leppard, Sarah Barclay, Vic Robinson (chair)
Notes for Editors
Child Bereavement UK supports families and educates professionals when a baby or child of any age dies or is dying, or when a child is facing bereavement. Every year we train more than 10,000 healthcare professionals helping them to better understand and meet the needs of grieving families.
Tel: 01494 568913
Child Bereavement UK, Clare Charity Centre, Wycombe Road, Saunderton, Buckinghamshire HP14 4BF
Charity No in England and Wales: 1040419 and Scotland SCO42910