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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.

Purpose of review:The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles.Recent findings:PnPC is a new concept in neonatal intensive care approach. Advancements in perinatal diagnostics and medical technology have changed the landscape of the perinatal world. The threshold of viability continues to decrease, and diagnostic information is available earlier in pregnancy and more rapidly at the bedside; overall outcomes continue to improve. This rapid technological improvement brings ethical debates on the quality of life of patients with life-limiting and life-threatening conditions and the need to involve the family in the decision-making process, according to their wishes and cultural beliefs. Although the Perinatal Hospice concept was developed in the 1980s in the US, the first recommendations on how to develop a PnPC pathway were published in the early 2000s. We considered the most relevant position statements or guidelines on PnPC published in the last two decades. Some of them were more pertinent to pediatrics but still useful for the fundamental concepts and PnPC project's development.Summary:Health care providers and institutions are encouraged to develop PnPC programs, which have the goal of maximizing the quality of life of infants with non-curable conditions. These may generally include the following: a formal prenatal consultation; development of a coordinated birth plan between obstetrician, newborn care, and family; access to other neonatal and pediatric specialties, as needed; comfort palliative care during the prenatal, birth, and postnatal periods; and psychosocial and spiritual support for families, siblings, and staff.

In recent years, the diagnostic-therapeutic developments in fetal and neonatal medicine have profoundly changed the medical and ethical context in which pediatric healthcare professionals work.

Perinatal palliative care (PnPC) is a comprehensive, interdisciplinary model of care with the aim of offering specific, personalised responses while guaranteeing that the child and family receive global care from the time of diagnosis until end of life.1 Italy lacks a national consensus to guide healthcare professionals involved in PnPC,2 and the choice to initiate neonatal resuscitation at the limit of viability or to interrupt intensive treatment in cases of poor outcomes is left to doctors and families. By sending an online 19-item, multiple-choice questionnaire to all centres contributing to …

Background: The prevalence of children receiving long-term mechanical ventilation at home (LTMV-H) is rising in many countries as advances in technology and medicine extend the survival of such patients. In Italy, the prevalence is 4.2 per 100,000 pediatric patients. It becomes essential to thoroughly assess these patients’ needs, and of the quality and adequacy of their home care. Pediatric palliative care (PPC) may be an appropriate strategy for the global care and quality of life of children needing LTMV-H and their families. Objective: To characterize children on LTMV-H in the Veneto Region (north-east Italy) based on the experience of the Veneto Regional Center for PPC and Pain Control (VRCPPC). Subjects: Children and adolescents (0-18 years of age) receiving invasive and noninvasive LTMV-H in the care of the VRCPPC from 01/09/2008 to 31/12/2013. Methods: A retrospective cross-sectional analysis conducted by developing a regional database of children on LTMV-H. Results: 56 children were on LTMV-H (mean age 4.5 years, 55% male), during the period considered. At the time of the survey, 38 of them were still in the care of the VRCPPC, 10 had died and 8 had been discharged. The children on LTMV-H accounted for 50% of all patients in the care of the VRCPPC (38/76 patients). They suffered mainly from neuromuscular diseases (NMDs) (17 patients), myopathy (11 pts), congenital central hypoventilation syndrome (CCHS) (7 pts), or nervous system disorders (7 pts). All patients had severe comorbidities. Their mean age when LTMV-H was started was 3.9 years. Ventilation was invasive (IMV) in 31 cases and noninvasive (NIV) in 25. Its initiation was mandatory in 39 cases (and in the intensive care setting for 36 of these children) and elective in 17 (and 15 of these children were in hospice care). Ventilation was provided for a mean 17.5 hours a days (14 for NIV; 18 for IMV). Median 9-year survival was 61%, but varied considerably by type of patient, being longer for NMDs, myopathy, CCHS, nervous system disorders (over 11 years in 78% of cases). Conclusion: This population has complex life-long needs and numerous comorbidities that demand appropriate, continuous and qualified care. PPC could be an efficient strategy for meeting health goals and optimizing treatment planning.

Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and pediatric palliative care, the exposure, and the personal experience concerning end-of-life care management. The data have been obtained through a survey addressed to all the residents specializing in pediatrics in Italy. Three hundred forty-eight of 1,200 residents from 33 of the 41 schools of pediatrics existing in Italy responded to the questionnaire. One hundred seventy-four of them (50 %) declared they received training in end-of-life care at least once: 146 during their graduation course of medicine, 84 during the pediatric residency, and 54 in both occasions. Sixty percent of respondents were present at one death at least, with an increasing percentage in the last years of residency (91.5 % in the fifth year) but only 12 % were directly involved in the management (36.2 % in the fifth year); 5.7 % managed at least one communication of death; 12.6 % followed sedo-analgesia protocols. Only 11 % of residents felt ready to face end-of-life care management. Conclusion: The training in end-of-life care in Italy is not currently satisfactory. Further efforts are therefore required to create a comprehensive and multidisciplinary training.