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Neonatal Palliative Care: Nurturing and supporting choice for families whose baby has an uncertain future and is expected to die

This Dying Matters Week #DMAW21 the focus is #InAGoodPlace to die, considering choices in relation to the location, who would like to be present and where they might access emotional and practical support.

The focus of this week will highlight an increased awareness on truly understanding #whatisimportant for families and #whatmattersmost to them, especially when their baby has an uncertain future and where death may be a possibility. It is crucial that families are given the opportunity and space to explore their priorities and goals, and what this might look like for them. The healthcare professional, and this is usually the baby’s allocated nurse or midwife, will need to create the time to nurture and enable these conversations.

International Nurses Day on 12 May will celebrate the central role nurses have in leading these conversations with families.

Starting the conversation

Nurses are often best placed to start these conversations by the cot-side, building a rapport and relationship with the parents whilst gaining an understanding of what their wishes are for their baby and family.

There are different approaches and varying terminology to describe these vitally important conversations within neonatal palliative care, such as Advance Care Planning, shared decision-making, thinking and planning ahead. Advance Care Planning is described here:

It can encompass all aspects of life and care, and not solely medical decisions. It is typically a dynamic process, occurring as a series of discussions between clinicians and parents, evolving over time, rather than a one-off conversation

Downie et al (2020)

Only by close collaboration between parents, maternity, neonatal and children’s palliative care teams, can families be meaningfully offered continuity and consistent high quality care. This is one of the overarching aims of the National Neonatal Palliative Care Project to ensure seamless pathways of care across teams and organisations, sharing information and having shared goals with families.

How do parents feel?

Parents tell us that they value honest, clear and current information so that they can make informed choices and the best decision for their family at that particular point in time.

In her recent blog, Julia Hackett, describes findings from their recent study (Hackett and Beresford 2021), which further explores choices offered to families regarding the provision of cooling facilities within children’s hospices and the family home for use after their child’s death. Parents reported that they felt the opportunity to use a cooling facility, either a bespoke ‘cool’ bedroom within a children’s hospices or a ‘cooling’ mattress which can also be used in their own home, should be routinely offered to all parents at this most devastating time in their lives.

Working together

The importance of healthcare teams collaborating is further highlighted here, an essential element of neonatal palliative care is that referring teams have access to the most current information and are aware of this particular service is available. Furthermore, it is important that healthcare professionals have an awareness and understanding of how this option of care can positively affect families, as well as having the confidence in introducing this concept to families at a time when they are at their most vulnerable.

A particularly essential element of Advance Care Planning is being able to jointly discuss what is really important for the parents, their baby and wider family and finding the opportunity and time to do this where the baby’s death is a possibility.

As healthcare professionals, I think we can sometimes get quite caught up in worrying about what we call the care we provide. Simply, it’s about taking the time to sit calmly with parents and ask them what is important and how together we might think ahead to how we can make their wishes a reality. There may also be times they change their mind, assuring them that is ok and we will do what we can to talk through all options available. But if we don’t gently guide these conversations, or nurture and enable moments for the family to be together, we are doing the family and their baby a disservice, by not creating an opportunity to think about being in a #InAGoodPlace to die.

Parents must be given the space and time to explore what is important for them and their family, including other children and grandparents. It is only by creating a safe space, asking and offering gentle guidance that this can be explored.

Twitter: @mancini_smith

Title quote: Cecily Saunders (1918-2005) – English nurse, social worker, physician and writer, founder of the hospice movement, emphasising the importance of palliative care in modern medicine.

Downie, J, Kerr-Elliott T & Craig F (2020) in Mancini A, Kerr-Elliott T & Price J (2020) Neonatal Palliative Care for Nurses. 1st Edition Springer Nature. Switzerland

Mancini A, Kerr-Elliott T & Price J (2020) Neonatal Palliative Care for Nurses. 1st Edition,SpringerNature. Switzerland

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