Important Research from the USA replicated in Portugal

Categories: Research.

Neonatal End of Life Care studies began in the 1990’s and continue today. Dr. Anita Catlin has conducted 11 studies in this area and summarized her work. Catlin reported that the United States had made considerable progress in providing dignified and peaceful end of life experiences for neonates and their families.


Dr. Charlotte Wool presented the state of the science on palliative care in the prenatal period.  Wool presented the results of 20 empirical studies that examined the experiences of families when parents opt to continue a pregnancy in which their fetus was diagnosed with a life limiting condition.

Portugal was recently awarded Level II status in the provision of paediatric palliative care by the International Children Palliative Care Network. Dr. Joana Mendes, from Portugal, replicated the study conducted in the United States in 2002 by Catlin and Carter in order to assess physician readiness to build an end of life protocol. The aim of Mendes’ research was to build consensus among the neonatologists of Portugal and encourage the uptake of evidence-based neonatal palliative care protocols. Fifty seven Portuguese neonatologists participated in an online Delphi study over a year’s time resulting in palliative care guidelines for Portuguese NICUs. Portuguese neonatologists showed great sensitivity to ethical and moral problems in addressing the needs of families and newborns with life threatening or life limiting conditions or in end of life. 

Physicians agreed upon seven areas: the planning needed (medical education, resources and local), prenatal palliative care principles, the newborn’s criteria for palliative care, working with parents, physician’s needs, pain and symptom management and end of life care.

The evidence supports the premise that perinatal and neonatal palliative care can improve patient outcomes. When a successful palliative care programme for neonates exists, families have an opportunity to surround their newborn with love and provide them with a peaceful and dignified death.  Caregivers are empowered to create supportive environments and help parents through one of the most difficult times of their lives.  Perinatal palliative care is a new field of research needing further development. The science suggests that perinatal palliative care is welcomed by parents and is a medically safe and viable option. Women voice positive feedback about their decisions to continue their pregnancies, and parents cite personal growth in the aftermath. Incorporating early and integrated care beginning in the antenatal period is vital, as is a multidisciplinary coordinated approach.

Following the session a robust discussion with participants took place. Nurse researchers from around the world contributed their thoughts about palliative care and their current experiences in their areas of practice. Information about appropriate nurse-initiated interventions was shared. Participants recognized the challenges facing clinicians, including lack of guidelines and inconsistent responses to families in the antenatal and neonatal settings. Participants also discussed the phenomenon of hope, a theme in much of the palliative care literature. The use of pre-planning, coordination among clinicians in obstetrics, neonatology, bereavement, and spiritual services were also considered and discussed. 

Overall, the session garnered positive feedback from those in attendance and highlighted the international need for more research in the field of palliative care in the antenatal, perinatal, and neonatal period.