Introduction and importance of perinatal palliative care St. Josef Hospital in Vienna delivers comprehensive medical care with a particular emphasis on obstetrics. Our perinatal palliative care (PPC) programme is designed to support families during the challenging period surrounding the birth of a child with life-limiting conditions.   Services and offerings at St. Josef Hospital Interdisciplinary team We have formed a dedicated interdisciplinary team comprising gynaecologists, midwives, neonatologists, nurses, psychologists, and chaplains. This team collaborates closely to provide holistic care tailored to the unique needs of each family. Before birth Our support begins well before birth with thorough counselling sessions. We elucidate the diagnosis to the parents and its implications for their child. Many parents feel helpless and frightened in this situation, making our support and the provision of ample time for decision-making crucial. Often, parents face a difficult journey marked by a loss of control and external pressures. Our PPC programme aims to help them experience a self-determined birth and make the time with their child as meaningful as possible. In preparation, we work closely with the parents and our interdisciplinary team to develop a comprehensive birth plan and a neonatal care plan. These plans consider the parents’ wishes and the child’s medical needs, detailing actions for various scenarios to ensure optimal support and care for both the child and the parents. Advanced Care Planning (ACP) is integral to this process. Whenever possible, the same professionals remain with the family throughout the course of care, fostering a trustful relationship. During birth During birth, we strive to create a stress-free and dignified environment for the family. For deliveries involving palliative care, we provide a dedicated midwife. This one-on-one support is crucial for intensive and personalised care. The dedicated midwife remains continuously present, offering emotional support, monitoring the birth process, and adapting care to the evolving needs of the family. © iStock After birth Post-birth, our primary focus shifts to palliative care, which can extend from a few hours to several weeks, depending on the child’s condition. We ensure that all medical needs, including pain relief, are met to provide maximum comfort. Parents receive ongoing emotional support from our psychologists and chaplains, who assist them in coping with their emotions and processing their grief. We also aid families with administrative tasks and coordination with other institutions to ensure access to necessary resources and services. Additionally, we help families create cherished memories through photographs, hand and footprints, or special farewell rituals, which are vital in the grieving process. If the child lives longer, we facilitate seamless integration with external care facilities, including outpatient services, specialised children’s hospices, and other relevant organisations. After discharge from the hospital, families can opt for outpatient follow-up sessions, if needed. These conversations offer an essential opportunity for continued emotional and psychological support. Conducted by the same psychologists who cared for the families during their hospital stay, these sessions ensure continuity and trust. Implementation The implementation of our PPC programme naturally brought with it challenges, but these were largely related to specific structures of the hospital. Thus, these challenges were very individual, and in the end all initial problems were solved well thanks to an incredibly committed and interdisciplinary team. Conclusion Our PPC programme at St. Josef Hospital Vienna offers a comprehensive and compassionate service that transcends traditional medical care. We provide families in challenging life situations with unwavering support and comfort. The holistic and individualised care provided by our specialised team enables affected families to say goodbye and experience the loss of their child with dignity.

© Pixabay Extremely preterm infants (EPI), born before 28 weeks of gestation, represent a small but significant population in neonatal intensive care units (NICUs). Despite their small numbers, they contribute disproportionately to neonatal deaths and present unique challenges in end-of-life care (EOLC). Although the fundamental principles remain consistent, there are notable differences in end-of-life decision-making and care for EPI compared to other newborns and older children. A recent study investigates the complexities surrounding EOLC for extremely preterm infants, examining antenatal decision-making and care in both the delivery room and NICU, while exploring  potential reasons for these differences and addressing the practical and ethical challenges involved.   Antenatal counselling and decision-making Antenatal counselling plays a crucial role in preparing for the birth of an EPI. Healthcare professionals meet with parents to discuss potential outcomes and care plans. The concept of a “grey zone” has emerged, where parental decisions determine whether survival-focused or palliative care is provided. Recent guidelines have moved beyond using gestational age alone, incorporating other prognostic factors to guide decision-making. Some of these include severe growth restriction, administration of antenatal steroids, place of delivery, singleton vs multiple birth and foetal sex. However, each situation is unique and requires individual consideration.   Delivery room care EOLC in the delivery room presents particular challenges. There is an on-going debate in the medical community about whether neonatal teams should attend deliveries of the most preterm infants (20-21 weeks). While their absence may prevent inappropriate treatment initiation, it can also lead to challenges in symptom management and flexibility in care plans. In some situations, plans to provide comfort-focused care at delivery for an EPI may be revised after birth because either the infant’s condition is significantly better than expected, and/or because the parents change their mind. The latter might occur because of the parents’ response to seeing their newborn infant, or because the infant’s condition is different from what they had been expecting. In general, symptom management for EPI in the delivery room lacks extensive data. Studies indicate that few infants receive comfort medication, highlighting the need for better guidelines. Non-pharmacological interventions are emphasised, but opioids like buccal diamorphine or intranasal fentanyl may be necessary when symptoms are severe. Non-pharmacological measures include the provision of wrapping, warmth, and continuous physical touch from parents as well as avoidance of stimuli such as loud noise, bright lights, or cold air. In conjunction with this, interventions that might cause discomfort (e.g. physical examination, airway procedures, vascular access) should be minimised or avoided.   Global differences in end-of-life care for preterm infants In high-income settings, like in the UK, Europe, and the US, most EPI deaths in the NICU follow end-of-life decisions to limit life-sustaining treatment. However, significant regional variations exist. In South America, East Asia, and the Middle East, decisions to limit treatment for extremely preterm infants, as for older infants (and children), may be made on the basis of judgement that the infant is actively dying despite maximal therapy, a prediction that the infant is highly likely to die if treatment were continued, or based on concern for the child’s quality of life if they survive. Prognostic uncertainty and the perceived difference between withholding and withdrawing treatment can complicate decision-making.   Ethical considerations There is some evidence that end-of-life decision-making appears to be different in the paediatric intensive care unit (PICU) compared to the NICU. A study done in a children’s hospital in the Netherlands revealed that 25% of deaths in the PICU occurred despite full intensive care, while this applied to only 4% of non-preterm deaths in the NICU. While 71% of decisions in the NICU were based on predicted poor quality of life, only 22% were in the  [1]. Furthermore, another study showed that approximately 65% of US health professionals judged it acceptable to withhold treatment in a case of an EPI with poor life expectancy, but only 15% were prepared not to resuscitate a 2-month-old infant with bacterial meningitis and identical prognosis  [2]. This may reflect that neonatologists potentially feel more guilt or responsibility if their patients survive with severe disabilities. Transferring infants to home or to a hospice for EOLC is rare due to physiological instability and logistical challenges. However, this option may be valuable for some families, necessitating better support and training for healthcare providers to facilitate such transfers. In summary, EOLC for extremely preterm infants requires careful planning and empathetic support for families. Further research is needed to improve symptom management and to evaluate the impact of different approaches to care. Practical measures, including non-pharmacological interventions and appropriate medication use, should be considered to ensure the best possible care for these vulnerable infants and their families. Additionally, the place of death and after-death care for patients need further discussion, as they may be valuable options for families.   Paper available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10914670/pdf/main.pdf Full list of authors: Dominic JC Wilkinson, Sophie Bertaud DOI: 10.1016   [1] Snoep, M.C., Jansen, N.J.G. and Groenendaal, F. (2018), Deaths and end-of-life decisions differed between neonatal and paediatric intensive care units at the same children’s hospital. Acta Paediatr, 107: 270-275. https://doi.org/10.1111/apa.14061 [2] Annie Janvier, Isabelle Leblanc, Keith James Barrington; The Best-Interest Standard Is Not Applied for Neonatal Resuscitation Decisions. Pediatrics May 2008; 121 (5): 963–969. 10.1542/peds.2007-1520. https://doi.org/10.1542/peds.2007-1520

Guest article by Elena Megalemou Triantafyllides, President of the Board of Directors of our partner parent organisation in Cyprus, “Mora Thavmata” (Miracle Babies)   The “Miracle Babies” Association is a non-governmental organisation, a member of EFCNI’s network of parent and patient organisations, and supporter of the European Standards of Care for Newborn Health (ESCNH).  It was founded in early 2015 by a small initiative group consisting of parents, grandparents, and relatives of preterm babies. OUR AIM To support the Neonatal Intensive Care Unit (NICU) at Arch. Makarios III Hospital in Nicosia, the unique Level III-IV referral centre for all of Cyprus. OUR VISION The upgrade of the NICU according to international and European standards so that… … preterm and ill neonates have the best possible start in their lives. … parents can be present in the Unit for as long as they wish. … adequate staff and personnel are present in a healthy and safe environment – following the ESCNH for “NICU design” HISTORY OF THE NICU The NICU in Makarios III Hospital Nicosia is the only referral centre for the entire island of Cyprus (public and private sector, British bases, occupied areas). Based on international standards and guidelines, for every 8,000-10,000 births, one NICU level  III-IV is needed. In Cyprus we have 8,000-9,000 births per year. The NICU opened in 1985 with 18 beds (incubators/cots), increased to 48 throughout the years due to the increasing rate of preterm births. Now the occupancy is up to 150%, as more than 60 newborns are hospitalised daily. It is obvious that a new and upgraded NICU is needed urgently. TODAY’S REALITY Presently, the existing NICU – due to superfluity, lack of space, and inadequate personnel resources and training – does not meet international standards like the ESCNH. It is scientifically and medically proven that infant- and family-centred care, the presence of the parents and especially the practice of skin-to-skin / Kangaroo Mother Care helps newborns and parents. In Cyprus, parents can visit their babies only two hours a day – expanded recently to 6 hours a day after actions by our Association. THE UPGRADED UNIT According to international standards and guidelines, the space and design should support infant- and family-centred developmental care, safe and optimal working conditions for healthcare professionals, and other relevant aspects of good clinical practice. We support continuous parent participation, interaction, Kangaroo Mother Care and skin-to-skin care, promotion of breast feeding, and infrastructure for parent-infant closeness throughout the 24 hours. We propose and design for the new NICU: a family room a breastfeeding room an upgrade for the offices of medical and nursing staff   Our Association is the first NGO in Cyprus to have started a strong campaign back in 2019 to convince the Government that the existing NICU has to be extended and renovated as soon as possible. Our inspiration was the Call to Action “ZERO SEPARATION”, initiated by EFCNI and GLANCE. Initially, we had to persuade the Health Authorities and the Ministry of Health concerning the necessity of the project. The proposal of our Association to the State took place in 2020 and was the result of an exchange of views with NICU neonatologists, medical staff, and parents. Our proposal found support from the Ministry of Health, the Health Committee of the House of Representatives, and the Accountant General. We cooperated with the Cyprus Health Services Organization and the Ministry of Health for 5 years. We prepared architectural and electro-mechanical plans and drawings based on international standards, worth 200,000 Euros which we delivered for free to the Cyprus Ministry of Health so as to speed up the declaration of a competition for the project. On the 12/06/2024 our dream became a reality. On that day, the President of the Republic of Cyprus, Mr Nicos Christodoulides, placed the foundation stone (cornerstone) for the project to begin. It is a project that will, on its completion, cost about 6 million Euros. We feel proud, moved, and satisfied that, after so many years, we made it. We shall remain in the front line until the project is fully completed. The first part (the extension) is estimated to be completed by the end of September 2025. Help and embrace the efforts of our Association!