1. The Tension between the desire for life and the acceptance of death within the neonatal environment Mary Goggin St. George’s University Hospitals Foundation Trust London UK

2. Background Neonatal palliative care Hospice care Perinatal palliative care is described as the holistic management of supportive end of life care following multidisciplinary agreement on eligibility for a fetus, newborn or infant and their family. It can also include a period of transition from active routine care in to palliative care” British Association of Perinatal Medicine 2009

3. UK 2013 Statistics 4722 extended perinatal deaths (3286 stillbirths and 1436 neonatal deaths) Occurring in babies born at 24 weeks gestational age or greater in 2013, Equivalent of 6 per 1000 births National Office of Statistics

4. Influences on survival Health care systems Economic factors Fetal medicine Technological advances (aggressive use of) Modalities of care (new and innovative) Pharmacological advances Skilled healthcare professionals Follow up Pushing back the boundaries (affluent societies)

5. Stakeholders in decision-making Society, cultural influences Parents Medical staff Nursing Staff Ethical committee Legal Opinion

6. Tensions Society Emotions associated with birth Expectations Cure Futile care Differing opinions, what do parents hear and accept Partnership

7. Societal attitudes Advances in medicine Babies are beautiful Miracle baby Lack of recognition of longterm co-morbidity Inequality in health Access to treatment Different cultures Different expectations

8. Nurturing Hope Ante natal care Fetal medicine Regionalisation of neonatal care Pharmacology Optimising time of delivery Admission to the NNU Success stories Annual celebration

9. Tensions within professional relationships Lack of communication Lack of agreement on time of transition Moral distress Kept alive versus being allowed to die Professionals struggle with the ethics of continuing futile treatment and interventions Burden of decision making

10. Tensions within the parent and family dynamic Lack of parental of agreement Parents wish to keep their child alive Respecting family wishes Parents may not accept the futility of treatment Influence of other family members Religious beliefs, culture and practices Education

11. Tension within the parent perspective Strength of biological ties Time to accept the reality Acceptance (time to process this information) “at some point I will have to explain that I made the decision to let him die” “I gave up on him” The withdrawal of care is part of their reality

12. Tension within the parent professional dynamic Parents understand “I don’t want them to go but, I don’t want them to suffer” Opportunities for discussion “I am so pleased she looked my in the eye and said I should consider letting him go’” Time to process the information Nobody ever came back and had that conversation with me again” Quality of life “Will he be able to enjoy a bedtime story. She couldn’t tell me that” The timing of the withdrawal of intensive care

13. How might we lessen these tensions? Acknowledge and understand the parents’ perspective - listening Burden of decision-making Preparation Good communication- language Make explicit realistic expectations Holding hope in balance Education

14. Take away message Holding hope in balance Good communication - Listening Language “I have to explain my decision to my surviving child, I have made a decision on someone else’s quality of life”

15. Questions? Thank you for listening