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Original research
Perinatal palliative care: a dedicated care pathway
  1. Francesca Rusalen1,
  2. Maria Elena Cavicchiolo2,
  3. Paola Lago2,
  4. Sabrina Salvadori2 and
  5. Franca Benini1
  1. 1 Woman’s and Child’s Department, Pediatric Pain and Palliative Care Service, University of Padua, Padova, Italy
  2. 2 Woman’s and Child’s Department, Neonatal Intensive Care Unit, University of Padua, Padova, Veneto, Italy
  1. Correspondence to Dr Francesca Rusalen, Woman’s and Child’s Department, Pediatric Pain and Palliative Care Service, University of Padua, Padova 35100, Italy; francesca.rusalen{at}aopd.veneto.it

Abstract

Objective Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents.

Design During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway.

Setting Maternal-Infant Department of Padua’s University Hospital.

Patients PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group).

Interventions The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities.

Main outcome measures Prenatal and postnatal management, symptom’s treatment, end-of-life care.

Results The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts’ mediation.

Conclusions PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.

  • perinatal palliative care
  • paediatric palliative care
  • neonatal mortality
  • life-limiting diseases
  • life-threatening diseases
  • neonatal pain management

Data availability statement

There are no data in this work.

https://doi.org/10.1136/bmjspcare-2019-001849

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    Data availability statement

    There are no data in this work.

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    Footnotes

    • Collaborators Perinatal Palliative Care Multidisciplinary Team: FASSON ALESSANDRA, DE TOMMASI VALENTINA 1. Woman’s and Child’s Department, Pediatric Pain and Palliative Care Service, University of Padua, Padua, Italy DOGLIONI NICOLETTA MD, GAIO PAOLA MD, ALLEGRO ANTONELLA, D’ANTONI VALENTINA, AHEUN NATASCHA, LOLLI ELISABETTA 2. Woman’s and Child’s Department, Neonatal Intensive Care Unit, University of Padua, Padua, Italy VISENTIN SILVIA MD, CIULLO ROSARIA, 3. Woman’s and Child’s Department, Gynecology and Obstetrics Clinic, University of Padua, Padua, Italy VERONESE PAOLA MD, MODENESE FABIOLA 4. Woman’s and Child’s Department, Gynecology and Obstetrics Unit, University of Padua, Padua, Italy APRILE ANNA MD 5. Coroner, University of Padua, Padua, Italy BARBISAN CAMILLO 6. Bioethicist, University of Padua, Padua, Italy SCALZOTTO FRANCESCA 7. Health Quality System Unit, University of Padua, Padua, Italy Pediatric Specialists, University of Padua, Padua, Italy: CERUTTI ALESSIA MD, cardiologist PADALINO MASSIMO MD, cardiac surgeon MURER LUISA MD, nephrologist SALVIATI LEONARDO MD, geneticist SARTORI STEFANO MD, neurologist.

    • Contributors FR: Literature search; study design; data analysis; data interpretation; writing. MEC: Literature search; study design; data collection. PL: Literature search; study design; data collection. SS: Literature search; data collection. FB: Literature search; study design; data interpretation; writing.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.