1. DEPARTAMENTO DE PEDIATRIA
CLÍNICA UNIVERSITÁRIA DE PEDIATRIA
Palliative Peri and Neonatal Care - the reality of the Neonatal Intensive Care Unit of a tertiary hospital
Beatriz Fraga; Inês Girbal; Graça Roldão;
Filipa Fonseca; Ana Rebotim; Graça Oliveira
Serviço de Neonatologia
Director: Carlos Moniz
Departamento de Pediatria
Directora: Maria do Céu Machado

2. Backgroun Palliative peri/neonatal care
The pre or post natal diagnosis of life-threatening conditions with limited life expectancy should lead to the implementation of palliative peri/neonatal care (PPNC)
PPNC addresses delicate ethical situations, difficult to approach, with particular emotional and spiritual challenges
PPNC include three phases: Diagnosis; Multidisciplinary evaluation and development of a care plan; End of life care and mourning.
The implementation of PPNC in nationals Neonatal Intensive Care Units (NICUs) has become a priority.

3. Background Goal Methods
The study aims to characterize the PPNC provided in the NICUs Centro Hospitalar Lisboa-Norte, with a view to improving the end of life journey for patients and parents.
Methods
Retrospective study
Review of clinical files of newborns that underwent PPNC from January to September 2015.
Statistical analysis performed in Excel 2010.

4. Results Sample charaterization Total =13 Newborns Minimum 23 Maximum40
Mean 30
Minimum
600
Maximum
3080
Mean
1439

5. Neonatal resuscitation in the delivery room
Results
Sample charaterization
Neonatal resuscitation in the delivery room
APGAR INDEX (MEAN)
1º minute 4
5º minute 7
10º minute 8

6. Results
Mean Diagnosis/Causes of death
Days

7. DECISION MAKING PROCESS
Results
Palliative attitudes
DECISION MAKING PROCESS
AVALIAÇÃO PLURIDISCIPLINAR E ELABORAÇÃO DE PLANO DE CUIDADOS

8. Results
Palliative attitudes

9. Results Palliative attitudes Pharmacological pain approach DRUGS USED
The use of medications to relieve pain may have the unintentional consequence of shortening life,the so-called “doctrine of double effect”. However, doctors in some countries have reported the practice of administering medications with the aim of ending life17, 56 (

10. Results
Palliative attitudes

11. Results Palliative attitudes
Memories of the baby: photographs, footprint/handprint, strand of hair ...

12. Conclusions
Prematurity and birth defects were the main target situations for palliative care
Areas for improvement:
The decision-making process in the newborn referred to palliative care
Establish a structured plan for each newborn referred to palliative care
When possible, formal meetings between parents and medical team before death
Improvement of the holistic and psychological support
After death: Protocoled approach including formal debrief with parents/communication of pending investigations/option for further appointments
Planeamento anticipado de cuidados coma familia

13. Conclusions
Nowadays, the implementation of PPNC is essential in all NICUs and has a positive impact on improving the overall population health care.
The PPNC require a multidisciplinary approach, centered in the newborn, family and their psycho-socio-cultural context.
It is essential to understand and assess the reality of the Portuguese NICUs to formulate PPNC specific plans that lead to the optimization of care.

14. Bibliography
Balaguer, A. et al. The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatrics, 2012; 12(25)
Bhatia J. et al. Palliative care in the fetus and newborn. Journal of Perinatology. 2006; 26:S24 S26
Breeze ACG. et al Antenatal diagnosis and management of life-limiting conditions. Seminars in Fetal & Neonatal Medicine.2013;18:68-7
Catlin A. et al. State of the Art. Creation of a Neonatal End-of-Life Palliative Care Protocol. Journal of Perinatology. 2002; 22:
Wilkinson D. et al. Ethical language and decision-making for prenatally diagnosed lethal malformations. Semin Fetal Neonatal Med. 2014; 19:
Fadel H. et al. End-of-Life Issues at the Beginning of Life. JIMA. 2011; 43:
Heuser CC. et al. Survey of physicians’ approach to severe fetal anomalies. J Med Ethics 2012; 38:

15. Thank you for your attention