Incurable newborns: no more delays, perinatal palliative care must be guaranteed nationwide

The SIN calls for an integrated care model centered on families to ensure dignity, comfort and support from pregnancy onward

From birth, a right to compassionate care

Every year on the last Sunday of May, Italy marks the National Day of Relief, focusing on alleviating the suffering of incurable patients. The Italian Society of Neonatology (SIN) seizes the moment to highlight the urgent need for equitable access to Perinatal Palliative Care (PPPC) in every Italian region — a multidisciplinary approach that combines medical excellence with ethical and emotional care for newborns and families facing life-limiting diagnoses.

Babies and families: an inseparable unit of care

In perinatal palliative care, the patient is not just the newborn — it is the entire family unit. Every action is taken within a relational, ethical, and legal framework, acknowledging that a baby’s care cannot be isolated from the love and decisions of the parents. When a prenatal diagnosis indicates a life-limiting condition, many families today choose to continue the pregnancy — a courageous decision that deserves full professional and emotional support.

A legal right still far from reality

Italy’s Law 38/2010 enshrines the right to palliative care for all — from newborns to the elderly. But today, only 15–18% of the children in need actually receive these services. Regional disparities remain stark, especially in the South, due to lack of protocols, staff training, and organized care pathways.

A new era of prenatal diagnosis, a new set of choices

With modern first- and second-trimester screening, 90% of lethal fetal anomalies can now be diagnosed before birth. While many couples opt for pregnancy termination, a growing number choose to meet their child, even for a brief time. PPPC offers these families a path grounded in dignity and non-suffering, steering away from excessive treatments and focusing on comfort care.

SIN’s model: integrated teams and shared protocols

To standardize and promote Perinatal Palliative Care, the SIN established a dedicated study group in 2021, working with gynecologists, neonatologists, midwives, psychologists, bioethicists, and legal experts. The goal is to create shared care pathways (PDTA) and multidisciplinary teams within all third-level Neonatal Units across the country.

Data reveals awareness, but services lag behind

A 2024 survey by SIEOG and SIMP, on behalf of SIN’s PPPC group, revealed that 21% of professionals were unaware of the existence of PPPC. Furthermore, 60% of birth centers still do not provide these services, and only 41% report having shared care protocols. Nonetheless, 63% of gynecologists believe all mothers with fetal life-limiting diagnoses should be offered PPPC.

Dr. Chiara Locatelli, secretary of the SIN PPPC Group, stresses:
“A growing number of professionals are aware of the value of these practices. It’s not just about science. It’s about training, care and shared humanity. And that’s where we must continue investing.”

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Frequently Asked Questions about Perinatal Palliative Care

1. What is perinatal palliative care?
   A medical and ethical care approach for newborns with incurable diseases and their families.
2. When is it offered?
   After a prenatal or neonatal diagnosis of a lethal or life-limiting condition.
3. Who receives it?
   Not just the baby — the entire family is involved in the care process.
4. What is comfort care?
   A dignified end-of-life approach that avoids suffering and unnecessary treatments.
5. Is it available nationwide?
   No, there are major territorial disparities, especially in southern Italy.
6. Who makes up the PPPC team?
   Neonatologists, gynecologists, midwives, psychologists, ethicists, and nurses.
7. How is the care path defined?
   Through a shared PDTA agreed upon during pregnancy and birth planning.
8. Is there a law requiring these services?
   Yes, Law 38/2010 recognizes the right to palliative care — but it is not uniformly applied.
9. Is psychological support included?
   Absolutely. Specialized counseling accompanies families before and after birth.
10. Do these services exclude medical treatment?
    No. They avoid disproportionate interventions while prioritizing dignity and comfort.