Needs of Families in Perinatal Palliative Care and Proposal for a Model Training Questionnaire

Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.

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Perinatal palliative care: a dedicated care pathway

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2019-001849 ◽

2019 ◽

pp. bmjspcare-2019-001849 ◽

Cited By ~ 4

Author(s):

Francesca Rusalen ◽

Maria Elena Cavicchiolo ◽

Paola Lago ◽

Sabrina Salvadori ◽

Franca Benini

Keyword(s):

Palliative Care ◽

Best Practice ◽

Work Group ◽

Care Pathway ◽

Shared Care ◽

University Hospital ◽

Grade Method ◽

Paediatric Palliative Care ◽

Extremely Preterm ◽

Perinatal Palliative Care

ObjectiveEnsure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents.DesignDuring 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.SettingMaternal-Infant Department of Padua’s University Hospital.PatientsPnPC 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).InterventionsThe multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities.Main outcome measuresPrenatal and postnatal management, symptom’s treatment, end-of-life care.ResultsThe 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.ConclusionsPnPC 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.

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