The CW+'s Neonatal Palliative Care Project has developed from a partnership between Chelsea and Westminster Hospital NHS Foundation Trust and The True Colours Trust. The London-based project began in 2015 and was formally evaluated in 2020, with the key recommendation of consolidating the learning and progress from this pilot project to ensure a sustainable roll-out of this activity across all Operational Delivery Networks in England and the devolved nations, and to provide training and development of the neonatal and maternity workforce (Pinney, 2020). In the immediate term, this will be rolled out across three regions in England over the next three years and will be further evaluated.
This successful pilot in London has also seen the appointment of the first National Lead Nurse in Neonatal Palliative Care (NPC), Alex Mancini-Smith, the appointment of which was also a recommendation of the Neonatal Critical Care Review (NHS England and NHS Improvement, 2019). Although this is an emerging specialism within neonatal care, Alex has been advocating for the importance of palliative care on neonatal units for the last two decades, culminating more recently in virtual, multidisciplinary training and mentorship during the COVID-19 pandemic. This work has been underpinned by the British Association of Perinatal Medicine (2010) Palliative Care Framework, which sets out the categories of care that may be required.
Offering quality palliative and end-of-life care is critical to being a midwife today
In broad terms, NPC should be a multi-disciplinary approach which facilitates discussions between the family and clinicians to identify an appropriate and individualised care pathway which prioritises their needs, provides choices for that care, ensures clinicians are continually trained and developed to support those difficult and sensitive conversations, and seeks to continuously improve bereavement care and support. As midwives, we have an integral role in delivering this care and must ensure we seek opportunities to develop ourselves professionally in both palliative and bereavement care.
NPC, as a multi-professional approach, varies significantly from all other aspects of maternity and neonatal care in that it centres around the ethical and humane concepts of a ‘good death’ (Kain and Chin, 2020), moving from the notion of simply supporting life to ensure quality of that life when its duration is limited, and the outcome is uncertain (Parravicini, 2017). It may be recognised as needed during a pregnancy or may not be identified until soon after birth (Dickson, 2017).
The importance of preparing all professionals involved in delivering NPC is well documented. Beltran and Hamel (2020) recently explored this within an American context and suggested that both testing interventions to train and support healthcare professionals providing NPC is crucial, as well as the development and implementation of NPC teams and guidelines. While evaluating the comfort and confidence of neonatal clinicians in delivering NPC, Peng et al (2018) suggested that any training must be interdisciplinary, and this type of care is not delivered by any professional in isolation.
Within the UK, Knighting et al (2019) described the successful utilisation of a network approach to deliver NPC education, with the evaluation of their one-day multidisciplinary workshops highlighting that a formal, integrated education programme is needed, as well as longitudinal research into the impact on the practice and experience that families receive. Of particular note is the inclusion of parent stories within this training, recognised as being both powerful and having a lasting impact on participants.
Considering the integration of this education within the pre- and post-registration training of healthcare professionals, Nurse et al (2020) suggest that preparing practitioners early with a sound knowledge of end-of-life processes for the baby will ensure the needs of the baby and family are met, suggesting also that the use of ongoing reflection and debriefing is essential. Furthermore, Price et al (2019) state that NPC should be a component of midwifery and children's nursing student's education curricula and should be delivered to them together within inter-professional workshops to ensure that these future perinatal care practitioners learn with and from each other.
As an experienced neonatal midwife, I have cared for many families throughout the end-of-life care for their baby, both when this has been anticipated and when it has been unexpected, as well as at the point of discharge of their infant with a life-limiting condition. I don't recall any specific training for this important aspect of neonatal care and, instead, had to draw upon the experience and support of colleagues, as well as following a local checklist to ensure nothing was missed. While I always tried to ensure that I both advocated for the best interests of the baby in my care and listened to the parents on how they would like this care to be delivered, I would have welcomed a programme of education that would have prepared me for this aspect of the care I delivered and, as such, welcome the developments from this project.
Within Scotland, where I live and work, the importance of NPC has been identified within our quality framework for neonatal care (Neonatal Expert Advisory Group, 2013), within government policy on all aspects of palliative and end-of-life care across both the lifespan and all parts of society (Scottish Government, 2015), and more recently within our maternity and neonatal services review; the ‘Best Start’ (Scottish Government, 2017). Although we have made great strides in raising the profile of NPC in Scotland, the ongoing work of this project will be pivotal to support midwives and other practitioners in delivering NPC, further developing their knowledge and confidence in this important area of perinatal care across the UK and beyond.