Deaths in the neonatal period account for 40% of all child deaths under 16 years of age.¹ The need for early recog-nition of infants with palliative care needs, excellence in communication and decision making, and quality end of life provision on neonatal units is now recognised in national standards for neonatal care.^2,3 Despite this, senior neonatal trainees feel unprepared for the challenges of decision making and caring for the dying child and their family.⁴ Neonatal and paediatric palliative care (PPC) networks in Wales are experiencing a period of rapid integration. This mirrors similar situations across the world as the specialty expands and neonatal teams care for increasingly complex infants. An educational curriculum can provide structure on which to base key knowledge and experience, benchmark competence and foster greater service integration to drive up the quality of care for infants with palliative care needs.⁵ Previous learning needs analyses of multi-professional neonatal staff have identified that communication skills and managing practicalities such as post mortem and organ donation are key areas for learning development.^4,5 This is the first study to focus on trainees undertaking a dedicated career course in neonatal medicine.

Aims

1. To assess perceived confidence of neonatal specialty trainees in delivering paediatric palliative care on neonatal units.

2. To develop a neonatal palliative care curriculum to structure learning and governance projects and strengthen integration between neonatal and paediatric palliative care specialties.

Methods

Competency domains for newly qualified neonatologists relating to neonatal palliative care were generated by the study team from review of existing training curricula and published multi-professional learning needs analyses of neonatal staff. Items were agreed by the study team including a PPC consultant and registrar, and a neonatologist, in broader consultation with a team of experienced paediatric palliative care specialist nurses. These competencies were used to develop a learning needs analysis questionnaire sent electronically to all neonatal subspecialty trainees in the UK in April 2019, (approximately 120), with two reminders sent in May and June 2019. Perceived confidence in each competency domain was rated 1-5 on Likert scales. A comprehensive list of curriculum items was developed from the survey results and agreed by both the All Wales Paediatric Palliative Care Team and the Welsh Neonatal Network to act as a structure for ongoing education, integration and governance initiatives. This study was discussed with the Cardiff and Vale Research Ethics Committee who decided that, as this project was part of a quality improvement initiative within neonatal care, no formal ethical approval was required.

Results

The current Association for Paediatric Palliative Medicine (APPM) level two curriculum identifies key skills, knowledge and attitudes required of a training paediatrician in general paediatrics, much of which is transferrable to neonatologists.⁶ There is limited mention of palliative care competencies in the current national neonatal curriculum in the UK.^7,8 The study team generated the following key competency domains for trainee neonatologists, which remain consistent with both PPC and neonatal training curricula (FIGURE 1).

FIGURE 1 Key competency domains for neonatal palliative care.

We received 53 survey responses from a total of approximately 120 neonatal trainees across the UK. Perceived confidence in the key competency domains is demonstrated in TABLE 1.

TABLE 1 Perceived confidence in key domains of neonatal palliative care among neonatal subspecialty trainees in the UK.

On average, trainees self-reported some understanding of all the competency domains but would require additional support to provide good care. Confidence increased with seniority. There was a broad spectrum of confidence across most domains. Broad PPC concepts perceived as well understood included appreciation of the scope of PPC services and ability to identify neonates who might benefit from PPC support. This is perhaps a reflection of the recent development of national guidance for end of life care in children and results from a 2018 national audit of bereavement care provision by the charity Bliss. There is also rapid expansion of paediatric palliative care services in the UK, with improving integration into many of the regional training programmes for paediatric trainees.³

Less than 8% of trainees were ‘very confident’ in any of the domains, and for seven of the 15 domains, no trainees were very confident. Trainees were least confident in ethical and legal issues, and leading conversations about withdrawing and withholding life-sustaining treatment. This corroborates similar studies of multi-professional neonatal staff. These are very complex areas and typically taught in abstract terms that are difficult for trainees to conceptualise.^9,10 Low confidence was reported for specific discussions around organ donation, post mortem examination and organising transfer for end of life care at home or hospice. This emphasises the importance of training in communication skills to ensure optimal delivery of these discussions, as well as ensuring locally applicable information is available to trainees with regards to organ donation, post mortem procedure, and community palliative care and hospice provision. These results highlight the need for adaptation of education interventions to reflect the current level of integration of PPC on neonatal units, as well as local and national PPC provision, which varies widely between regions even within the UK.

APPENDIX 1 shows the curriculum generated from the competency domains and learning needs analysis. Extensive discussions within PPC and neonatal teams led to additional items relating to referral for psychosocial support for families and the need to consider antenatal cases. These were incorporated into the final curriculum selection.

APPENDIX 1 The final All Wales Neonatal Palliative Care Curriculum.

Discussion

Trainee neonatologists report wide variation in confidence when managing palliative care in their patient population. Key areas of low confidence include developing a practical approach to more complex discussions with families around ethical and legal issues, as well as managing practicalities at the end of life in the context of local palliative care and community provision. There is currently limited comprehensive guidance for trainees in neonatology on expected competencies relating to neonatal palliative care. The importance of adapting competencies to local need, current palliative care team integration and local palliative care services including hospice provision is emphasised in this study. The resulting joint curriculum provides a locally agreed and applicable framework for directing further service integration and education between regional neonatal units and regional PPC teams. In Wales, we have developed joint guidance for transfer of neonates to hospice care for extubation and are developing national training days to address learning needs identified in this study.

This study provides valuable insight into training needs of future neonatologists in identifying the key areas to target for training and service development. This simple questionnaire design and collaborative working between teams represents an easily replicated process for other teams wishing to improve confidence of their neonatologists in providing palliative care. Limitations include a small sample size and the risk of responder bias with those particularly interested in the area more likely to respond to questionnaire requests. The addition of focus groups or interviews to explore the complex barriers and facilitators to newly qualified neonatal consultants providing palliative care would provide a rich data source and be a valuable next step in optimising training in this area.

Conclusions

The key points arising from this study are summarised in FIGURE 2.

FIGURE 2 The key points from this study.

Acknowledgements and funding

The authors would like to thank the team of paediatric palliative care specialist nurses in the All Wales Paediatric Palliative Care Team and from Ty Hafan Children’s hospice, for their discussion and feedback in the development of the final curriculum items.

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.