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Dying to be heard

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Today, in Dying Matters Week the focus is on babies who have died before birth, at the time of birth or soon after.

#DyingToBeHeard highlights the importance of listening to families and what is important for them in the planning of care for their baby’s life and death. Professor Lorna Fraser’s recent work ‘Make Every Child Count’ (2020) reports that the prevalence of life-limiting conditions was highest in the under one-year age group. It is therefore crucial that healthcare professionals seek opportunities wherever possible for families to be together via whatever means possible. This may be via Facetime, WhatsApp, video conferencing, vcreate system; whatever is available to capture precious moments in a safe environment.

Making progress in supporting families whose baby is not expected to survive
It is fundamentally important that we acknowledge the progress made regarding the support and guidance given to families whose baby is not expected to survive. Valuable resources for healthcare professionals such as A Perinatal Pathway for Babies with Palliative Care Needs (2017) highlight key principles and standards to support clinical practice. However, we must continually strive to improve partnerships with families, maternity and neonatal units with community palliative care services and children’s hospices, whilst ensuring consistent high-quality care is equitable.

Giving families choice
Over the last few years teams have collaborated closely with families, developing plans supporting and enabling choices, exploring realistic options, creating opportunities for memory making inclusive of the whole family. Community palliative care services including children’s hospices have been collaborating and developing robust care pathways facilitating choice for families which were not previously available.

The impact of COVID-19
The future remains uncertain for the charitable organisations on which we rely so heavily to support families in the community once they are at home. COVID-19 has created a situation where social distancing is required, both in hospitals and the community, particularly for these extremely vulnerable babies and their families. Usual support systems such as friends and family members are not permitted to visit, thereby isolating families even further. Furthermore, community palliative care services and children’s hospices are restricted in providing the range of services previously accessed by families at this most difficult and challenging time in their lives.

The words death and dying are in the public domain more than ever
With the presence of COVID-19 over the last few weeks, the words death, dying and died have been heard by the general public far more frequently than ever before. Words which have been enveloped with fear and uncertainty for many people, but for the parents of a baby on a neonatal unit, these are words they may hear recurrently in the same sentence as their baby’s name. Just imagine for a moment how that may feel…being told that your most precious vulnerable baby is not expected to survive.

Listening to and talking with families
We must listen; really listen to what parents say is important to them regarding the care of their baby. As healthcare professionals we are best placed to create a safe space to have these discussions at the earliest opportunity possible. The way in which we communicate with families has changed significantly in recent weeks. In accordance with local and national guidance, parental access has been restricted on neonatal units and maternity units, Therefore at the most crucial time when parents need to hear difficult and sensitive news together, they may be separated from each other, making it impossible for both parents to hear the information at the same time.

Difficult conversations may need to be held via the telephone or digitally in place of face to face meetings, subsequently reducing the opportunity for both parties to observe non-verbal communication and body language. Non-verbal cues and body language may be lost or misinterpreted, making these situations even more challenging for both the family and the healthcare professionals. Additionally, masks may be worn, further concealing facial expressions.

Giving families gentle guidance
Parents tell us that they would like gentle guidance from us, gentle suggestions about choices, what is possible and where that care may be given, being mindful that these choices and availability of options may change on a daily basis. Be guided by parents, but also give gentle guidance.

The future remains uncertain, but we are learning together alongside families about what is possible. We need to develop and build appropriate services to support the growing number of babies living with a life limiting condition, and this needs to be a priority in planning future services as reported by Professor Lorna Fraser’s ‘Make Every Child Count’ study.

A seamless service
My vision 20 years ago was to connect neonatal and children’s palliative care together to create seamless care for babies and their families, whilst also collaborating with other vital specialties such as midwifery, antenatal, maternity and children’s services.

We are committed to working together to realise that vision, and recently we have witnessed momentous and considerable advancement. It remains possible to realise our shared goals with robust working relationships and collaboration which are essential to developing equitable Neonatal Palliative Care services for families. It will just look a little different now, however, key is that we continue to encourage and gently guide honest and clear conversations with families about what is important to them, at the earliest opportunity possible.

Then we must listen. #DyingToBeHeard #DyingMattersWeek



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