Uncertain Trajectories Best practices from start to finish Alex Mancini, Pan London Lead Nurse for Neonatal Palliative Singapore August 27th 2016
Nothing can prepare you for the death of a child “It is vital that the staff who are caring for our babies and supporting us through this difficult time are trained and equipped to do so with an understanding of the procedures that will allow our babies to die with dignity, whilst ensuring that they do not suffer unnecessarily" ”I cannot stress enough the importance of having access to professionals who work as a team and put your baby at the forefront of their planning. Good training, guidance and support is essential to empowering them to do this and to reassure us, as parents, that we do not have to worry about the practical aspects of our babies’ condition and can concentrate on being the best parents we can be for whatever time we have left with our precious children” (Caroline Friel, mother to Brigid)
Best Practice? How do we know it is best practice? Parental feedback Research studies Team satisfaction
5 Key Components Decisions based on the best possible information Joint decision making with parents Open and honest communication throughout Clear documentation Individualised integrated care plan with MDT Continuing care of the mother Flexible care plan with regular reviews Parallel planning Advanced care planning Encompassing, emotional, psychological, spiritual and cultural aspects
Perinatal Palliative Care
Focus on life and creating memories for the whole family Photographs Coordinated approach to care Moments together New parents-exhausted/tired Whole family Pressure-May have only just Siblings told their friends & family they are pregnant Grandparents Hopes for the future-child Organ donation growing up/schoo l/university/
Continuum of Care
11
Goals of care 1) Pain 6) Mouth Care 2) Feeding 7) Secretions 3) Vomiting 8) Medication 4) Elimination 9) Mobility-pressure area care 5) Agitation/distress 10) Care of the family
Dual planning/Parallel planning Preparing families for 2 very different How can we support families to scenarios make choices? Plan for survival and prepare for death Routine antenatal care needs to The issue remains are similar, continue regardless which country you work in Good communication and planning are It’s an opportunity for the parents to essential share their fears and their hopes How can we make sure families have all the options explained to them? Empathy Compassion Non judgemental
Framework Diagnosis Breaking bad news MDT discussion Ongoing Care MDT assessment Careplan-whole family End of Life Care Advanced care plan Bereavement support
15 Framework Eligi bility Family care Communication & Documentation Flexible parallel planning Pre birth care Active postnatal care to supportive care End of life care Post end of life care
Guidance
Collaboration Baby C was born at term following an emergency caesarean section after an antepartum haemorrhage. The baby received prolonged resuscitation, suffered significant hypoxic ischaemic encephalopathy and withdrawal of life sustaining treatment was considered appropriate. The father wished to wait for his wife to recover from the general anaesthetic before this took place. The mother who was unwell herself was unable to spend time with her baby on the neonatal unit. The baby was extubated on the neonatal unit and transferred to a side room on the postnatal ward where a neonatal nurse continued to provide one to one care, alongside the midwife caring for the mother.Seizures were controlled on the postnatal ward — medications were administered via an umbilical catheter. The mother wished to suckle her baby, and was supported to do so. Their daughter lived for two days — during this time the parents had uninterrupted time with her. After the baby died a cooling mattress was used so that she was able to remain in their room on the postnatal ward for several hours.
Education for Staff Knowledge Collaboration Networking Confidence
22 Working together Baby’s needs Family’s needs Resources What is important for that family What is possible for that family
The following presentation is taken from the LCPC Symposium 2016: When Caring Never Stops – Meeting the Needs of Vulnerable Babies
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