The Neonatal Unit (NNU) at Bradford Royal Infirmary has 31 cots and provides intensive care services to sick neonates born within and outside the Yorkshire Neonatal Network. The local population is unique in terms of ethnic diversity with around 50-60% of the population belonging to south Asian minority and an increasing number of Eastern European migrants.
There are around 15-20 neonatal deaths every year within the neonatal unit. Caring for infants and families around the time of death, whilst addressing the expectations of all the families within the different and diverse cultures of the Bradford area, poses additional challenges as there is not a ‘one size fits all’ package of support.
In recognition of the importance of meeting family’s expectations and requirements for practices at the time of death, these being influenced by religious and cultural beliefs, we have established a dynamic Neonatal Bereavement Support Group. The group is represented by a diverse mix of health professionals including neonatal doctors, nurses, outreach midwives, community palliative care specialist nurses, psychologists, hospice professionals, chaplaincy and parent representatives.
We provide end of life care to families both antenatally (planning for delivery and care after) and postnatally (usually following reorientation of intensive care). We provide a consultant led multidisciplinary service that offers support and care to the baby and family in the hours leading to death. We offer a follow up provided by the neonatal consultant and nurses / outreach midwives who have previously engaged with the family. The families are offered a choice of hospice support during care, though most families choose hospital led care potentially due to the unique geography and social circumstances. We have a choice of bereavement suites and bedrooms within the hospital that we offer to the families where we can accommodate the extended family and allow them to spend precious time together.
The neonatal bereavement support group has reviewed existing practices over the last 18 months and have transformed the way in which we support and create memories for the families and enable sensitive transfer to home or mortuary after death. We have procured cameras, memory sticks, memory boxes and comfort care packs to be used around the time of palliation. In order to accommodate the varying religious beliefs and to be truly inclusive, we have devised a faith specific memory box for our Muslim families in close liaison with the chaplaincy team. We have developed information for staff to support and respect individual families’ beliefs surrounding death in Islam. Kind donations from charities and voluntary organisations have enabled us to provide families with comfort packs that contain clothes, toiletries, children’s books etc.
Education and training has been a key area of focus where we have made significant impact. In order to support the junior members of the team, we have a ‘buddy system’, where they get to work with experienced staff when looking after neonates with end of life needs. An interested group of staff have received photography training from a professional photography charity called ‘Now I lay me down to sleep’ and an information leaflet has been developed to help staff take good quality pictures. We are also engaging with this charity to provide free professional photography to bereaved families. A training gap analysis around end of life care is being undertaken and the group is represented on the trust wide End of Life Core Group to identify appropriate training provisions for all the staff. End of life care has also been embedded into the mandatory simulation based multidisciplinary teaching sessions in the neonatal unit to enhance communication skills and develop understanding of best practice.
We are working closely with local hospices and have developed effective working relationships with the community team to enable seamless discharge if care were to be offered at home.
A key influence to the motivation and progress of the group has been the contribution of the parent representatives in the group. They have been instrumental in raising funds for the group and guiding us in how best to enhance families’ experiences. We are also in the process of providing staff support and debrief opportunities for staff with input from the psychology team.
With continuing support from the wider multidisciplinary team, we organised a day of training for staff and volunteers through the ‘Child Bereavement UK’ charity with a view to develop a 4 week family support programme for the bereaved families, particularly siblings. There is some way to go to achieve appropriate long term support for families and in streamlining antenatal care pathways around end of life care.
“Bereaved parents never forget the understanding, respect and genuine warmth they received from caregivers, which can become as lasting and important as any other memories of their baby’s brief life.” Leon (1992).
Even decades later, these words hold true and remain as the major motivation for us to enhance our clinical and compassionate care for bereaved families within the NNU.
About the authors:
Dr. Chakrapani Vasudevan is a Consultant Neonatologist on the Neonatal Unit at Bradford Royal Infirmary, UK and can be contacted at email@example.com
Suzi Minchella is a Senior Sister on the Neonatal Unit at Bradford Royal Infirmary, UK and can be contacted at firstname.lastname@example.org.
Leon IG (1992) Perinatal loss: A critique of current hospital practices. Clinical Pediatrics. 1992. Vol 31. P. 366-74