Ethics in perinatal palliative care

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Perinatal palliative care emerged both from a historical need in the care of babies in Neonatal Intensive Care Units (NICU) who face difficult chances of survival, as well as the growing technology that prolongs life, through the intense development of fetal diagnosis and treatment centers in recent decades.

In a spectacular review published in the journal Seminars of Perinatology, Brian Carter, President and Professor of Medical Humanities and Bioethics at University of Missouri-Kansas City School of Medicine and Children’s Mercy Bioethics Center , analyzed the history and ethical foundations for providing pediatric palliative care services

and perinatal care to families in the pre- and post-natal periods who care for a loved one in limiting circumstances.

Care perinatal palliatives

The article highlights that the establishment of NICUs in the last 50-60 years marked the beginning of a death most visible of babies who are increasingly premature, those who require surgery and those for whom assistive life support technologies have failed. In this sense, the field of bioethics paved the way for palliatives and provided a justification for the field. Adult and pediatric palliative care services have gained increasing acceptance over the past 20 years. It is important to remember that the palliative approach should be indicated from the moment of diagnosis.

Concepts of Bioethics

What to do when diagnosing a potentially life-limiting genetic condition by ultrasound or amniocentesis at 16 to 20 weeks gestation? Fetal MRI in utero would provide information to help a team child to prepare for the care of xiphopagus twins? How can prenatal counseling around the diagnosis of hypoplastic left heart syndrome and the choices it presents be understood in a way that is helpful for family decision making for the newborn?

All these issues arise from a desire to do good, respect people, mitigate harm, and offer care options that are unique to all equally affected mothers. There are ethical aspects to doctor-patient communication, decision making, health team dynamics, pain and symptom management, addressing existential issues and patient spirituality, care within a cultural context, psychosocial care for family members and caregivers, and much more. most.

Also read: Pediatric Palliative Care in the view of the Brazilian Society of Pediatrics

As these issues became increasingly addressed in the NICU and obstetrics, it can reasonably be understood that, by extension, they can be projected into the period before and immediately after birth.

• Presence and support in the delivery room

Understanding fetal diagnostic information can help the neonatologist to repair for the delivery room, anticipate a good or marginal response to resuscitation, and how the NICU course can proceed. Psychosocial-spiritual support may be necessary.

• Post childbirth

The role of perinatal palliative care may well extend to post-NICU care for some, such as in the nursery and at home. Newborns depend on adults to discern, address, defend and protect their best interests.

Conclusions

E – Understand the context of the moment

P – Prepare the care

O – Organize the time of delivery

S – Follow

Ensure appropriate follow-up after delivery, considering all possible fetal outcomes.

Source: Adapted from Bolibio et al., 2018

Author:

Graduated in Medicine from the Faculty of Medicine of Valença ⦁ Medical residency in Pediatrics at the Cardoso Fontes Federal Hospital ⦁ Medical residency in Pediatric Intensive Medicine at the Hospital dos Servidores do Estado do Rio de Janeiro. Master in Maternal and Child Health (UFF) ⦁ Doctor in Medicine (UERJ) ⦁ Improvement in Neurointensivism (IDOR) ⦁ Physician at the Pediatric Intensive Care Unit (PICU) at the Pedro Ernesto University Hospital (HUPE) at UERJ ⦁ Pediatrics Professor at the course of Medicine at Fundação Técnico-Educacional Souza Marques ⦁ Member of the Brazilian Pediatrics Research Network at IDOR in Rio de Janeiro ⦁ Accompanied the Pediatric and Cardiac ICUs of the Hospital for Sick Children (Sick Kids) in Toronto, Canada, supervised by Dr. Peter Cox ⦁ Member of the Brazilian Society of Pediatrics (SBP) and the Associação de Medicina Intensiva Brasileira (AMIB) ⦁ Member of the sedation, analgesia and delirium committee of the AMIB and the Latin American Society of Pediatric Intensive Care (SLACIP) ⦁ Board member of the American Delirium Society (ADS) ⦁ Coordinator and co-founder of the Latin American Delirium Special Interest Group (LADIG) ⦁ Supporting Member of the Society for Pediatric Sedation (SPS) ⦁ Consultation child sleep and breastfeeding.

References:

• Carter BS ( 2021). An ethical rationale for perinatal palliative care. Seminars in perinatology, 151526. Advance online publication.
• Bolibio, R., Jesus, RC de A., Oliveira, FF de, Gibelli, MABC, Benute, GRG, Gomes, AL, Nascimento, NBO do, Barbosa, TVA, Zugaib, M., Francisco, RPV, & Bernardes, LS (2018). Palliative care in fetal medicine. Revista De Medicina, 97(2), 208-215.
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