The Role of the Nurse in the End of Life Decision Making Process

Lisa Leppard has worked within a Neonatal Tertiary Unit for 30 years in Clinical, Management, Network and National roles. Her current role, which she has undertaken for 19 years, has been developing the post of Clinical/Family Support Lead Nurse within a tertiary Neonatal Unit, utilising clinical evidence, audit, data and parent/carer feedback. She is responsible for the completion of national databases i.e. MBRRACE & PMRT. Initially this role was part-time but she has developed it, making it into a full-time role and leading a team of 3. The team also includes a clinical psychologist and to gain funding for this role, she worked collaboratively on the business case as part of the Neonatal Parents Mental Health Framework. The team ensures that Family Centred Care remains integral to the unit's ethos & that the parents/carers are given a voice and are well supported. Until recently, she was also the Safeguarding Lead for the Neonatal Unit and completed Level 3 training in Safeguarding. She has extensive experience with audit, working with all levels of the multidisciplinary teams. She was the lead for the BLISS Accreditation of the UHS Neonatal Unit, which was the first unit to be awarded Family Friendly Accreditation within the UK. She was recently part of the BLISS working party to review and update the BLISS audit tool and has also been a Professional BLISS Baby Charter Assessor. She has been the Thames Valley and Wessex Neonatal Network Lead Nurse for Palliative Care for 6 years. To facilitate standardisation of palliative care across the Network, she co-wrote the Palliative Care Pathway adopted and adapted in 2014 by TV&W NNW. She recently facilitated the review and update of the Palliative Care Pathway within the Network. In 2017, she contributed to the review and re-launch of the Together For Short Lives Neonatal Palliative Care Pathway. She is a chapter co-author in the new Palliative Care Text Book for Neonatal Nurses. She co-wrote the chapter on the Nurse’s role in the decision making process. (Neonatal Palliative Care for Nurses. Springer, 2020)

As lead of the Family Support Team, Lisa has developed a link with the Fetal Medicine Team working with families where a life-limiting diagnosis has been made to both support and plan the care of the parents and their baby at delivery and beyond, as well as completing ACP’s and discussing symptom management with parents and medical colleagues. This process includes acting as an advocate for the baby and their families, and always listening to their individual needs. She was part of the team to adapt a Perinatal Palliative Care Pathway for the Wessex Region. She has also worked collaboratively with the Multidisciplinary Paediatric teams to develop pathways to ensure the transition of care of neonates to Paediatrics is seamless & the parents/carers are well supported in the process.

Lisa has been seconded to develop the role of Neonatal Palliative Care Specialist Nurse at Naomi House, a local children’s hospice, raising the profile of hospice care being accessible to neonatal families and staff. She has developed a referral pathway and has visited all the units in the Wessex region, establishing contacts & promoting this as a choice to be offered to parents. She has undertaken the UNICEF Breast Feeding Training course and supported the Breast Feeding Lead Nurse with working towards the Baby Friendly Initiative within her unit. She completed a Counselling Diploma in 2016 and qualified as a Civil Mediator in 2018. Both of these qualifications have enhanced her communication and listening skills when working with families and professionals at all levels. She has a proven track record of managing and defusing challenging situations. She has developed Parental Support Groups and initiated a Father’s Group on the Neonatal Unit.