Palliative care for babies (neonates): Developing services

Continuing our series to celebrate the International Year of the Nurse and Midwife 2020 and the benefits that nursing and midwifery bring to the health of the global population.

To mark this world first, the European Association for Palliative Care is delighted to publish a special series of 12 monthly posts to honour the work of nurses who work in palliative care and draw attention to several issues that are linked to this crucial workforce. Today, we hear from Alexandra Mancini (Smith), who is Pan London Lead Nurse for Neonatal Palliative Care at the Chelsea and Westminster NHS Foundation Trust, CW+ and the True Colours Trust, London, UK.

Alexandra Mancini (Smith).

Neonatal Palliative Care is gaining global recognition as an emerging specialty in its own right. I am fiercely proud to be a nurse; for the past 28 years I have been passionate about raising awareness, advocating choices in care for families, and improving how the neonatal world can join forces and collaborate with children’s palliative care teams. As nurses, we have a responsibility to share our experiences with each other and learn from the babies and the families we care for, consistently striving for high-quality care.

Twenty years ago, I looked after a baby called Bowen. Both he and his family inspired me to advance my vision for developing Neonatal Palliative Care, even though at the time we didn’t know it was called this. Bowen is the inspiration for the work that I do, including the publication of the first-ever textbook, Neonatal Palliative Care for Nursesedited and written by nurses. This was formally launched in February at the Child Bereavement UK 10thNeonatal Palliative and End-of-Life Care Conference in Leeds, UK.

Education, training and knowledge is essential for developing services; this book contributes towards educating nurses – both at the beginning of their careers and those who are more experienced, including other healthcare professionals.

Bowen’s mother said:

“The night I realised my beautiful baby wasn’t going to survive, all I wanted to do was take him home. I know it seems like a crazy and odd thing to want to do, but I wanted to bath and dress him and cuddle him without a million tubes attached. Luckily for me, I had the support of the neonatal nurses and hospital priest who enabled this to happen. My baby Bowen was a strong little boy with the most beautiful face and it fills my heart that he was the inspiration for this book. I hope it can help nurses and other healthcare professionals to help other families in my situation.”

Palliative care for babies can start antenatally before birth, at the time of delivery or on the neonatal unit. The book shares numerous examples of excellent palliative care in hospital. However, we also know from families that they wish to take their baby home with support from community services. It is vital that we work in partnership with families and colleagues to develop the best possible plan for individual families, sharing our expertise and resources to enable choice.

Neonatal Palliative Care is not an ‘added extra’; it should be embedded into routine neonatal care enabling families to share time and experiences together. Where new life and the uncertainty of death balance alongside each other, wherever possible, families need to be supported and enabled to just ‘be’ together to do the things which are important for them, wherever that may be. Essentially, this is good Family Centred Care.

In my role as Pan London Lead Nurse for Neonatal Palliative Care, I had the opportunity to develop an educational model of training, bringing together teams from the acute maternity and neonatal settings, community and children’s palliative care. (Nurse et al. in Neonatal Palliative Care for Nurses, Mancini et al 2020)  We provided free training programmes onsite at the 27 neonatal units across London, and at each of the six London children’s hospices. It has been a successful approach that nurtures inter- professional learning across organisational boundaries. It is imperative that we draw on colleagues’ expertise and not work in isolation, enabling us to ensure families receive all the information they require and are given realistic choices for the care of their baby.

Like-minded people, shared goals, robust working relationships and collaboration are essential to developing equitable Neonatal Palliative Care services for families.

If you’re coming to Palermo for the EAPC World Research Congress and would like to know more about our work, please come and meet me. I shall be presenting a poster and information about our book will be available on the EAPC stand, including vouchers enabling you to buy a copy from the Wisepress bookstand at the congress with a 20 per cent discount.

Celebrate the International Year of the Nurse and Midwife 2020 on the EAPC blog #nurses2020 #midwives2020. View last month’s post here and join us in March when Professor Catherine Walshe will be our guest contributor.

Links and Resources




This entry was posted in ADVOCACY & POLICY, CHILDREN'S PALLIATIVE CARE, International Year of Nurse & Midwife 2020, Nursing. Bookmark the permalink.

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