About this Research Topic

Background

Neonatal-perinatal palliative care is a complete, multidisciplinary approach to care that evolved out of the field of Hospice and Palliative Medicine. The goal is to provide total care for the entire family when there is a life-limiting or medically complex fetal or neonatal diagnosis. With advances in technology, these diagnoses are often made earlier in pregnancies allowing families time to navigate complex medical decisions. At the same time, these advances have led to more treatment options and care paths. The goal of palliative care is to provide psychosocial and spiritual support throughout the family’s journey, helping them navigate goals of care and complex medical decisions, with a focus on comfort and quality of life, sometimes concurrently with life-prolonging interventions. The multidisciplinary approach allows for collaboration and cohesive care across subspecialties (obstetrics, maternal-fetal medicine, neonatology, palliative care, and pediatric subspecialties) and phases of care.

With the recognition of the importance of neonatal-perinatal palliative care for families and providers, the field has grown significantly in recent years. There are several hundred perinatal palliative care programs and an increased focus on research. Recent research has highlighted benefits of neonatal-perinatal palliative care for families and providers, experiences with life-limited diagnoses, trends in medical care, and barriers to care. Despite these recent clinical and academic advances, there remains a paucity of data, practice variation, and a lack of expert voice in many areas within the field. These areas include: education and program development, ethics within the changing medico-legal climate, sub-specialty collaboration for neonates with complex diagnoses, advanced symptom management for infants with chronic conditions and at the end of life, the impact of and counseling around fetal interventions or within fetal care centers, and disparities. We are also interested in other gaps in the literature related to neonatal-perinatal palliative care that have not been addressed or minimally addressed in existing research, studies, and articles.

Submissions of the following article types are welcomed: Original Research, Reviews, Mini Reviews, Policy and Practice Reviews, Hypothesis and Theory, Perspective, Clinical Trial, Case Report, Policy Brief, Brief Research Report, General Commentary, and Opinion.

Topics of interest include and are not limited to:

• Program development (including multi-specialty/discipline collaborations)
• Quality improvement measures in neonatal-perinatal palliative care
• Education, training, and curriculum development in perinatal palliative care, neonatal palliative care, and communications
• Palliative care in fetal care centers (including implications of fetal interventions)
• Impact of prenatal genetic testing
• Collaborations, outcomes, and care of medically complex neonates (cardiology, neurology, nephrology, etc)
• Paradigms of palliative care in periviable counseling and care
• Communication around neurodevelopmental outcomes and/or prognostication
• Ethical aspects of neonatal-perinatal palliative care in various countries
• Impact of the medico-legal landscape (abortion, personhood, and born alive protections) on neonatal-perinatal palliative care
• Advanced symptom management (delirium, complex sedation and analgesia, wound care, etc)
• End-of-life management (expanded symptom control, terminal ventilator weans, location of death)
• Brain death in neonates
• Neonatal organ donation
• Autopsies (including genomic autopsies)
• Neonatal euthanasia
• Advances in hospice care
• Legacy making
• Moral distress and support for providers
• Disparities in neonatal-perinatal palliative care
• Cultural and religious dimensions of neonatal-perinatal palliative care

Keywords: neonatal palliative care, perinatal palliative care, end-of-life care, fetal care, hospice, communication, symptom management, ethics, neonatology training, bereavement, organ donation, life-limiting

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