A Comprehensive Framework for Family-Centered Decision-Making in Perinatal Palliative Care: A Single Center's Clinical Perspective.
Children (Basel, Switzerland) · 2026
Abstract originale
Background: Perinatal Palliative Care (PPC) is a specialized approach designed to support families facing a prenatal or postnatal diagnosis of a life-limiting or life-threatening condition. Despite the publication of authoritative international guidelines, a significant translational gap persists between aspirational recommendations and consistent, reproducible clinical practice. Structured and operational frameworks may contribute to PPC implementation in real-world clinical settings. This Perspective aims to provide a practical, operational instrument for PPC, derived from and aligned with international guidelines, that translates their principles into concrete clinical steps. Methods: We developed and implemented a structured PPC protocol at our tertiary academic center through a multidisciplinary review of existing PPC guidelines and an iterative internal institutional consensus process informed by clinical experience and feedback from parents and healthcare providers; this is a descriptive clinical Perspective rather than a formal research study. Results: The "Super Micky" PPC protocol provides a comprehensive family-centered framework incorporating: (1) clear eligibility criteria for PPC, derived from international guidelines and Italian recommendations; (2) multidisciplinary assessment integrating neonatology, obstetrics, psychology, nursing, and social work; (3) clear, empathetic, and continuous communication integrated with family values and priorities; (4) development of a personalized Palliative Birth Plan co-constructed with the family and reassessed after birth in the light of the infant's clinical course; (5) ongoing emotional and psychological support; and (6) structured support for the clinical team through regular debriefings and ethical discussions. The protocol defines specific actionable steps across the entire care continuum, from antenatal diagnosis through labor, birth, neonatal hospitalization, and bereavement. Challenges observed in our clinical experience included prognostic uncertainty, variability in protocol application across clinical teams, and moral distress among staff. Conclusions: The "Super Micky" protocol is intended to translate the principles of family-centered care into a structured, practical instrument, derived from international guidelines, that other centers may adapt into routine perinatal practice; prospective evaluation of its feasibility, adherence, and family and staff outcomes is needed to confirm its impact. Its success depends on continuous team engagement, transparent communication with families, and robust support systems for healthcare professionals.
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A Comprehensive Framework for Family-Centered Decision-Making in Perinatal Palliative Care: A Single Center’s Clinical Perspective
Highlights
What are the main Findings?We developed and implemented a structured perinatal palliative protocol through an internal multidisciplinary consensus process, in line with international perinatal palliative care guidelines. The protocol provides a comprehensive family-centered framework covering the entire care continuum—from antenatal diagnosis through bereavement.
In a small pilot series, the protocol appeared feasible and adaptable to daily practice, although feasibility and adherence were not formally assessed. Observed challenges included prognostic uncertainty, inconsistent protocol application, and staff moral distress.
What are the implications of the main finding?The protocol offers a practical, reproducible model that other perinatal centers may adapt to help bridge the gap between guidelines and clinical practice.
The structured framework is intended to support consistency, may help to reduce variability, and is designed to support shared decision-making that respects family values.
Abstract
Background: Perinatal Palliative Care (PPC) is a specialized approach designed to support families facing a prenatal or postnatal diagnosis of a life-limiting or life-threatening condition. Despite the publication of authoritative international guidelines, a significant translational gap persists between aspirational recommendations and consistent, reproducible clinical practice. Structured and operational frameworks may contribute to PPC implementation in real-world clinical settings. This Perspective aims to provide a practical, operational instrument for PPC, derived from and aligned with international guidelines, that translates their principles into concrete clinical steps. Methods: We developed and implemented a structured PPC protocol at our tertiary academic center through a multidisciplinary review of existing PPC guidelines and an iterative internal institutional consensus process informed by clinical experience and feedback from parents and healthcare providers; this is a descriptive clinical Perspective rather than a formal research study. Results: The “Super Micky” PPC protocol provides a comprehensive family-centered framework incorporating: (1) clear eligibility criteria for PPC, derived from international guidelines and Italian recommendations; (2) multidisciplinary assessment integrating neonatology, obstetrics, psychology, nursing, and social work; (3) clear, empathetic, and continuous communication integrated with family values and priorities; (4) development of a personalized Palliative Birth Plan co-constructed with the family and reassessed after birth in the light of the infant’s clinical course; (5) ongoing emotional and psychological support; and (6) structured support for the clinical team through regular debriefings and ethical discussions. The protocol defines specific actionable steps across the entire care continuum, from antenatal diagnosis through labor, birth, neonatal hospitalization, and bereavement. Challenges observed in our clinical experience included prognostic uncertainty, variability in protocol application across clinical teams, and moral distress among staff. Conclusions: The “Super Micky” protocol is intended to translate the principles of family-centered care into a structured, practical instrument, derived from international guidelines, that other centers may adapt into routine perinatal practice; prospective evaluation of its feasibility, adherence, and family and staff outcomes is needed to confirm its impact. Its success depends on continuous team engagement, transparent communication with families, and robust support systems for healthcare professionals.
1. Introduction
Perinatal Palliative Care (PPC) is a specialized approach designed to support families facing a prenatal or perinatal diagnosis of a life-limiting or life-threatening condition. In this context, PPC emphasizes quality of life, symptom management, and holistic support, while remaining compatible with disease-directed or life-sustaining treatment when clinically appropriate. Grounded in a model that integrates maternal–fetal medicine, neonatology, psychology, nursing, social work, and spiritual care, PPC relies on multidisciplinary collaboration to guide families from the moment of diagnosis—delivering information with compassion, clarity, and honesty [1,2,3,4,5]. The need for appropriate care pathways is reinforced by a recent multicenter study [6], which reported a marked increase in continued pregnancies despite a prenatal diagnosis of complex and incurable fetal anomalies. Although palliative care in perinatal medicine has undergone considerable conceptual evolution in recent years, its integration into routine clinical practice remains variable across settings.
Despite the publication of authoritative international guidelines [7,8,9,10,11], on perinatal PPC from organizations such as the American Academy of Pediatrics (AAP) [7], the American College of Obstetricians and Gynecologists (ACOG) [8], the British Association of Perinatal Medicine (BAPM) [9], and the World Health Organization (WHO) [10], a significant translational gap persists. These guidelines articulate the principles of PPC—family-centered care, multidisciplinary collaboration, empathetic communication, and bereavement support. Several groups have begun translating these principles into dedicated care pathways, program-development guidance, and comprehensive care packages at the single-center or regional level [11,12,13]. However, few published models integrate the full continuum from prenatal counselling through bereavement into a single, step-by-step operational framework, and many centers still lack a structured tool for real-world implementation [7,8,9,10,11,12,14].
Consequently, translating broad recommendations into consistent and reproducible clinical workflows may remain challenging, particularly in complex clinical situations. This gap is particularly pronounced in the context of antenatally diagnosed life-limiting conditions, where the timeline is compressed, decisions are emotionally charged, and coordination between obstetric and neonatal teams is paramount. Furthermore, PPC may present a particular professional and ethical challenge for neonatologists, whose training and clinical practice are traditionally centered on life-sustaining treatment and the management of potentially reversible conditions.
PPC may therefore require clinicians to balance life-sustaining treatment with comfort, proportionality of interventions, and recognition of prognostic uncertainty. To address this implementation gap, we developed and implemented a structured PPC protocol at our tertiary academic center. This manuscript is presented as a clinical Perspective describing the development, structure, and implementation experience of this locally developed protocol. It is a descriptive account rather than a quality-improvement audit, formal guideline document, or research study with outcome data. This paper has two objectives: first, to describe our protocol—intended as a practical instrument for PPC derived from and consistent with international guidelines—and the operational steps we undertook; second, to share the challenges encountered in our clinical experience and lessons learned, providing a practical framework that other centers may adapt.
2. Developing the Perinatal Palliative Care Protocol
The development of the PPC protocol was guided by the aim of providing compassionate, coordinated, and continuous support to families facing a fetal or neonatal diagnosis associated with life-limiting or life-threatening conditions. Our PPC protocol was inspired by the first case managed through a dedicated comfort-care pathway at our center—an infant named Micky, born with a life-limiting condition. This experience highlighted to the clinical team the need for a structured and coordinated approach to supporting families facing similarly complex diagnoses. Therefore, this story contributed to the decision to formalize a protocol aimed at providing a consistent approach to coordinated, family-centered care. The protocol was developed through a multidisciplinary review of institutional experience, a review of feedback collected from parents and healthcare providers, and careful alignment with national and international PPC recommendations [7,8,9,10,11,12,14]. Throughout the manuscript, this feedback refers to a single, informal process: comments gathered from families and staff during the pilot phase and during team meetings, collated and discussed by the working group. It was not a structured survey, an audit, or a formal qualitative study.
The PPC protocol was formally established via an internal institutional consensus process that engaged the clinical stakeholders involved in perinatal care at our center. We adopted an iterative, Delphi-inspired approach—informed by, but not equivalent to, a formal Delphi study—in which successive rounds of discussion and anonymous feedback were used to build agreement on each protocol component. This iterative process supported progressive refinement and provided opportunities to discuss divergent viewpoints before institutional approval.
The process comprised the following sequential phases:-Multidisciplinary working group: A core team was convened, comprising neonatologists, obstetricians, psychologists, midwives, and senior neonatal nurses. This group undertook a comprehensive review of the existing literature, international guidelines from the American Academy of Pediatrics (AAP), the American College of Obstetricians and Gynecologists (ACOG), the British Association of Perinatal Medicine (BAPM), the World Health Organization (WHO), the European Standards of Care for Newborn Health (EFCNI), and the Italian Recommendations for PPC, as well as published PPC models and institutional experiences [7,8,9,10,11,12,14].
-Iterative consensus-building through Delphi-like methodology: The working group held a series of structured meetings over several months. Between meetings, draft protocol components were circulated electronically, and anonymous feedback was collected from members. This iterative process—mirroring the core principles of the Delphi technique—allowed for the progressive refinement of each element, so that divergent viewpoints could be discussed within the group and the final content reflected the internal agreement reached by the multidisciplinary team.
-Pilot testing and refinement: The draft protocol was piloted on three clinical cases over a six-month period. Informal feedback (as defined above) was solicited from participating families and clinical staff, and this input was used to further refine the protocol’s structure, language, and documentation templates prior to full-scale implementation.
-Formal institutional approval: The finalised protocol underwent formal review by institutional leadership and received official approval, thereby enabling its integration into routine clinical practice. The protocol was formally named the “Super Micky” Protocol. This eponym serves not only as a lasting homage to Micky and his family but also as a constant reminder to our team of the core values that underpin the entire framework: compassion, dignity, family-centered care, and the unwavering commitment to honoring every infant’s life, however brief.
This process reflects an iterative institutional consensus-building method informed by clinical experience and elements of the Delphi technique, rather than a formal Delphi study with pre-specified participant numbers, rounds, or consensus thresholds; feedback gathered during the three pilot cases informed refinements to language, workflow, and documentation templates prior to full-scale implementation.
3. Structured Framework for Decision-Making in the “Super Micky” Protocol
PPC encompasses the continuum from antenatal diagnosis through labor, birth, neonatal hospitalization, and, when applicable, bereavement.
Unlike exclusively curative or life-prolonging care, PPC provides a spectrum of options ranging from comfort-focused care to concurrent palliative and disease-directed treatments [13,15,16,17,18,19,20,21]. Because perinatal life-limiting diagnoses involve high emotional and ethical complexity, structured guidance is essential. A structured family-centered framework is intended to support consistency and continuity in communication with families and to facilitate shared decision-making that respects parental values and priorities. Moreover, a structured framework may help reduce unwarranted variability in clinical practice and may provide a basis for addressing ethical challenges and emotional burden among healthcare professionals [22,23,24,25,26,27,28].
PPC plan should be documented clearly and reviewed regularly. In the “Super Micky Protocol”, we propose an effective PPC framework incorporating:
For clarity, this manuscript distinguishes three related but distinct concepts: (i) PPC consultation or integrated palliative support, which may be provided concurrently with disease-directed treatment; (ii) transition to predominantly comfort-focused care; and (iii) withholding or withdrawal of life-sustaining treatment, a separate decision made individually according to prognosis, the anticipated burden and benefit of treatment, the infant’s best interests, and family values. The conditions listed in Table 1 may reasonably prompt consideration of PPC but do not, by themselves, determine a decision to limit life-sustaining treatment; this distinction is maintained throughout Section 4, Section 5, Section 6 and Section 7.
-Clear eligibility criteria: PPC is indicated whenever a fetus or newborn is diagnosed with a condition that significantly limits life expectancy, threatens survival, or is expected to result in severe and irreversible morbidity (Table 1). Eligibility is determined by the overall prognosis, the anticipated burden of medical interventions, and the values of the family, rather than being tied to a single diagnosis. PPC may commence during pregnancy, immediately after birth, or later in the neonatal course as new clinical information emerges (Figure 1 and Figure 2). Because prognostic uncertainty is inherent to many of these conditions—both prenatally and, in some cases, even after birth—eligibility does not require certainty about outcome. Consistent with frameworks that explicitly recognize uncertainty in perinatal palliative care [9], a useful guiding question is whether the clinical team would be surprised if the infant were to die or to survive with severe morbidity; when the answer is no, initiating PPC consultation and parallel planning—preparing concurrently for divergent trajectories—is appropriate and does not preclude continued life-sustaining care where indicated.
-Multidisciplinary assessment: Neonatologists, obstetricians, nurses, psychologists, and other specialists collaborate to build a unified understanding of each case, ensuring that all medical, psychological, and social dimensions are addressed.
-Clear, empathetic, and continuous communication is integrated with family values and priorities: Information is delivered progressively, in accessible terms, and aligned with the family’s emotional readiness. At the same time, parental beliefs, hopes, and cultural or spiritual considerations are actively elicited and become essential elements of the care plan, ensuring that decisions reflect what matters most to the family.
-Development of a Palliative Birth Plan: A structured document is co-constructed with the family, outlining preferences regarding labor, neonatal comfort measures, early bonding, and end-of-life care. The birth plan is part of the clinical record and is reviewed regularly, with the understanding that it remains provisional and may be reassessed if changes in diagnosis or prognosis occur. Reassessment is undertaken systematically after birth and at defined points thereafter; care may be escalated as well as de-escalated as the clinical picture evolves, and the plan is never treated as a fixed determination of treatment limitation.
-Ongoing emotional and psychological support: Families receive continuous guidance before, during, and after birth, including dedicated grief and bereavement support, ensuring that their emotional needs are addressed throughout the entire care journey.
-Support for the clinical team: Regular debriefings and ethical discussions help to reduce fatigue, promote team well-being, and sustain the emotional resilience required to provide compassionate care in this challenging field [1,2,3,4,5].
4. Eligibility to the Super-Micky PPC Protocol
Eligibility for PPC is derived from international guidelines and Italian recommendations and is determined through a structured, multidisciplinary assessment [7,8,9,10,11,12,14]. PPC should be considered when a fetus or newborn is diagnosed with a condition associated with substantially limited life expectancy, significant risk to survival, or potentially severe and irreversible morbidity. Prenatally, eligibility is triggered when comprehensive diagnostic tools—including ultrasound, fetal MRI, and genetic testing—identify life-limiting conditions (e.g., anomalies incompatible with survival, severe structural defects with poor neurodevelopmental outlook, or uncertain but likely severe prognoses). Postnatally, PPC applies to confirmed life-limiting diagnoses, extreme prematurity at viability limits, severe complications, or chronic critical illness where treatment burden likely outweighs benefit (Table 1). Given diagnostic limitations, eligibility remains dynamic, requiring ongoing reevaluation as scientific evidence evolves. In this context, the terms extremely low birth weight (ELBW, birth weight <1000 g), extremely preterm (birth <28 weeks’ gestation), and periviable (approximately 22–25 weeks’ gestation, at the threshold of survival) describe overlapping but distinct populations and are not used interchangeably in this protocol; each requires individualized assessment. Across both the prenatal and postnatal periods, eligibility for PPC is grounded in the recognition that the burden of medical interventions may outweigh their potential benefits. Even when curative treatments are possible, PPC may be offered concurrently, ensuring that comfort, dignity, and family-centered support remain central. PPC is a new and evolving field in neonatology, and its principles may be applied to the care of ELBW infants. When palliative care management and family-centered care are utilized alongside standard medical management, they have the potential to significantly improve outcomes and the quality of life for both affected infants and their families. Extremely premature infants face multiple acute and chronic life-threatening conditions, and the treatments aimed at ameliorating or curing these conditions often entail significant pain and discomfort. By integrating palliative care from the very moment that extremely premature labor is diagnosed, families and clinicians receive crucial support through the process of defining goals of care and making difficult decisions about life support. For both the ELBW infant who dies soon after birth and the one who experiences multiple complications over weeks and months in the neonatal intensive care unit, palliative care can maintain a consistent focus on infant comfort and comprehensive family support, ensuring that dignity and compassionate communication remain at the forefront throughout the entire journey [29,30].
5. Family-Centered Decision-Making in PPC Super-Micky Protocol
At the Modena center, the clinical and relational approach is grounded in the principles of the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) and the broader framework of Infant- and Family-Centered Developmental Care (IFCDC) [31,32,33,34,35,36]. The IFCDC model, originally designed to support neurodevelopmental outcomes in preterm and critically ill newborns, is extended to the PPC context, recognizing that every infant—regardless of prognosis—is a unique, sentient individual whose behavioral cues, physiological stability, and relational needs must be carefully observed, respected, and responded to throughout the entire care trajectory. Within this paradigm, decision-making is a dynamic, collaborative, and iterative process with families, while simultaneously protecting the newborn’s dignity, minimizing stress, and promoting gentle interaction.
From the moment of prenatal diagnosis, the care team initiates a “shared care planning” process, which represents the ethical and relational cornerstone of the entire palliative care journey. This is not a one-time discussion but an ongoing, evolving dialogue. Medical information is conveyed with clarity, honesty, and compassion, ensuring that parents fully understand their child’s condition, the range of possible outcomes, and the available options, without ever being overwhelmed by technical jargon or rushed into decisions. This shared journey naturally leads to the creation of a personalized birth plan—a document that translates the family’s values and preferences into concrete, actionable choices for the moment of birth. Crucially, the birth plan is not a rigid contract but a flexible guide, designed to adapt as circumstances evolve. As detailed in Section 3, the plan is reassessed systematically after birth, and care may be escalated as well as de-escalated as the clinical picture evolves. Every effort is made to balance what is clinically feasible with what the family hopes for, promoting early bonding and attachment through uninterrupted parental presence, gentle touch, and the creation of meaningful moments from the very first breath. Throughout this process, parents are offered quality time with their baby—unhurried, intimate moments that foster bonding and create lasting memories.
Postnatally, the IFCDC framework guides every aspect of care: through continuous, attentive observation of the newborn’s behavioral and physiological cues—including respiratory effort, neurological status, autonomic stability, motor tone, and pain responses—the multidisciplinary team adapts therapeutic interventions in real time to the infant’s changing needs, always prioritizing comfort, minimal handling, and protection from unnecessary stress. As outlined in Section 3, postnatal PPC may be provided alongside disease-directed and life-sustaining treatment. Where the goals of care have shifted mainly towards comfort-focused care, the primary aim is no longer to prolong life but to ensure comfort and quality of life while offering comprehensive support to the family; where disease-directed treatment continues, PPC is delivered concurrently with it. Symptom management includes prevention and treatment of pain, dyspnea, agitation, secretions, and feeding-related discomfort through individualized, proportionate pharmacological treatment titrated to adequate symptom relief while minimizing adverse effects, using non-invasive routes where possible, alongside essential non-pharmacological measures (skin-to-skin contact, gentle containment, swaddling, facilitated tucking, non-nutritive sucking, and a quiet, dimly lit, developmentally supportive environment). Respiratory support is guided by the current, regularly reassessed goals of care: within a comfort-focused approach, it is directed at the relief of distress, with oxygen therapy used when it alleviates symptoms, whereas invasive ventilation and intensive resuscitation are generally not undertaken unless they are consistent with the goals of care agreed with the family and reassessed at the time of the decision. Monitoring and diagnostic procedures are limited to those that directly contribute to comfort and decision-making, minimizing handling and disruptions to the infant’s rest-activity cycles.
Feeding decisions prioritize the newborn’s comfort and parents’ wishes, offering breastfeeding, expressed breast milk, or comfort feeding when feasible and well tolerated, while avoiding invasive nutritional support when it imposes a disproportionate burden; families are reassured that reduced intake at the end of life is a physiological process and not a source of suffering when appropriate comfort measures are in place. Concurrently, consistent with the IFCDC philosophy, parents are encouraged and supported in holding, touching, naming, and bathing, with unrestricted access whenever possible. Siblings and other family members may be involved according to parental preferences. This active involvement preserves the parental role and promotes attachment and bonding even within the limited time frame of palliative care [12,30,31,32,33,34]. Privacy and a calm, protected environment are ensured, particularly during end-of-life moments. Table 2 and Table 3 summarize the fundamental elements of the Super-Micky PPC protocol framework. Table 4 summarizes the main pharmacological agents recommended for pain control and sedation [37,38]. In the Appendix, we have reported the cases managed with the PPC protocol (Supplementary Table S1) [39], along with a narrative description of one of them (Supplementary Table S2); both are reported with the family’s written consent, as noted in the Informed Consent Statement. Supplementary Table S1 summarizes the 12 consecutive cases managed with the draft and final versions of the protocol, thereby describing the whole clinical experience accumulated at our center. It includes the three pilot cases—the first infants managed with the draft protocol during the six-month piloting phase, whose management was used to refine its wording, workflow, and documentation templates. Both the pilot cases and the remaining cases were reviewed retrospectively and descriptively, without predefined outcome measures, standardized data-collection forms, or assessment of protocol adherence.
6. Challenges of PPC Protocol Implementation
While the Modena protocol provides a structured framework for multidisciplinary collaboration, its completion has not been without challenges. In our clinical experience, we have observed several recurring difficulties that warrant transparent discussion. First, role clarity and coordination remain ongoing challenges. Despite clear definitions of team composition, the practical reality of busy clinical services often leads to overlapping responsibilities or, conversely, gaps in accountability. In our experience, the “continuity navigator” role—a senior nurse with dual training in neonatology and palliative care—has been essential for maintaining family-centered coordination, but this position requires dedicated protected time and specific training. Second, scheduling and attendance at multidisciplinary meetings pose logistical difficulties. Our protocol mandates periodic team meetings to review active PPC cases, but competing clinical demands frequently result in partial attendance. Third, consistency in protocol application may vary across clinical teams. While the referral triggers are predefined, some obstetric and neonatal colleagues remain hesitant to initiate palliative discussions early, particularly when prognostic uncertainty is high or when parents express strong preferences for life-sustaining interventions. This variability requires ongoing educational efforts and regular feedback on protocol adherence [1,2,3,4,5,6,7,8,9,10,11,12,14,29,30]. These observations derive from clinical experience, team debriefings, and informal feedback, and not from a formal evaluation of feasibility or adherence.
This experience has several limitations that should be considered when interpreting its applicability. First, it describes the protocol and implementation experience of a single tertiary academic center in Italy; direct generalizability to settings with different legal, financial, or organizational structures—including the availability of a dedicated continuity-navigator role—may be limited. Second, the protocol was piloted on a small number of clinical cases (three) prior to full implementation, which allowed initial refinement but does not provide a comprehensive picture of the diversity of situations that may arise with rarer conditions. Third, this manuscript is descriptive: it does not include a formal, structured evaluation of feasibility, protocol adherence, or family and staff outcomes following implementation; the cases summarized in the Supplementary Materials illustrate application of the protocol but do not constitute outcome data, and no control or comparison group was available. Prospective collection of such data—including family and staff satisfaction, adherence to protocol steps, and the diagnoses and number of families supported since approval—is planned and represents an important next step in evaluating and refining the Super Micky protocol. This prospective evaluation is intended to use predefined feasibility and adherence indicators, standardized data-collection forms, and validated family- and staff-reported outcome measures, in order to test whether the observations reported here are confirmed. Finally, legal, cultural, and healthcare-system factors shape PPC practice, and how Italian frameworks compare with those of other countries—for example regarding decision-making at the threshold of viability—merits dedicated discussion elsewhere [18].
Definitely, this single-center Perspective is descriptive: feasibility, protocol adherence, and family- and staff-reported outcomes were not formally assessed; no control or comparison group was available; and the sample was small. Accordingly, these findings should be interpreted as observations from clinical experience rather than results of a formal evaluation, and their generalizability to other settings remains uncertain.
7. Moral Distress in the Staff
The primary source of moral distress in PPC stems from the fundamental tension between the ingrained professional identity of the entire perinatal team—neonatologists, obstetricians, nurses, and midwives—all of whom are traditionally trained to sustain life—and the acceptance of death as a legitimate outcome. This conflict is acutely magnified when prenatal prognoses prove inaccurate. In cases where infants with severe life-limiting prenatal diagnoses exhibit unexpectedly favorable postnatal adaptation, staff and families may question whether the earlier focus on comfort care was premature or whether life-sustaining opportunities were inappropriately foreclosed, generating profound distress among team members who had participated in planning comfort-oriented care. Embracing prognostic uncertainty from the outset and openly discussing parallel plans for divergent outcomes with families and the team may reduce the likelihood that an initial comfort-focused plan is later perceived as premature (see Section 3). Conversely, when infants with less severe prenatal diagnoses experience sudden, unforeseen deterioration, staff grapple with the perception that families were inadequately prepared for the full range of possible outcomes, leading to feelings that expectations had not been met by the eventual course of illness. Beyond prognostic discrepancies, moral distress also arises when families request interventions that are unlikely to achieve their intended goal or decline recommended comfort measures, as well as when scientific evidence conflicts with local legal, religious, or cultural frameworks. To mitigate these challenges, our protocol incorporates structured debriefing sessions, ethical case discussions, transparent communication with families, and explicit acknowledgment of prognostic uncertainty from the outset. Regular case reviews allow us to adjust care plans dynamically when unexpected improvements occur, while revised communication strategies are intended to help families be better prepared for all possible trajectories [1,2,3,4,5,6,7,8,9,10,11,12,14,29,30,31,32,33,34].
8. Conclusions
The implementation of the “Super Micky” PPC protocol at our center represents a tangible response to the growing need for palliative care in the perinatal era. By translating the principles of family-centered care, multidisciplinary collaboration, and empathetic communication into a structured yet flexible framework, our experience suggests that PPC can be integrated into routine perinatal care, offering a practical instrument, derived from international guidelines, that other centers may adapt; prospective evaluation of feasibility, adherence, and family and staff outcomes is needed to confirm its impact. In our experience, the framework appeared feasible and adaptable, and it may help to support consistency and to reduce unwarranted variability in practice, although these effects were not formally measured. The challenges we encountered—ranging from prognostic uncertainty and variability in protocol application to the emotional toll on staff—have been instructive, prompting iterative refinements to our approach and reinforcing the need for ongoing education, debriefing, and ethical reflection.
References
1.Dombrecht L. Roets E. Cools F. Roelens K. Van den Mooter E. Goossens L. Chambaere K. Beernaert K. Supporting infants with severe perinatal diagnoses, their families and healthcare providers: Development of a perinatal palliative care program BMC Palliat. Care 2025 24 28110.1186/s12904-025-01923-y 41194116 PMC12587581
2.Xie J. Grealish A. Biesty L. Hunter A. Optimising Psychosocial Interventions for Parents Following Perinatal Bereavement: A Qualitative Study of Midwives’ Perspectives J. Adv. Nurs. 2025 82 7413 7427 10.1111/jan.70334 41178811 PMC13267433
3.Abrahamsson T. Acquah N. Ådén U. Afifi J. Alexandrino A.-M. Allen A. Allen M. Almeida A. Aminudin N. An W.W. Proceedings of the 16th International Newborn Brain Conference: Long-term outcome studies, developmental care, palliative care, ethical dilemmas, and challenging clinical scenarios in neonatal neurology J. Neonatal Perinat. Med. 2025 18 135 171 10.1177/19345798251375228 41194394
4.Bloomer M.J. Butler A.E. Brooks L.A. Coventry A. McKeever S. Ranse K. Rowe J. Thomas S. Thornton R. Parents’ and nurses’ experiences of end-of-life care in intensive care for children: A systematic review Aust. Crit. Care 2025 38 101455 10.1016/j.aucc.2025.101455 41175437
5.Takashima K. Hitosugi M. Yamamoto M. Maruo Y. Improving Perinatal Palliative Care in the Communities: A Regional Population-Based Study Matern. Child Health J. 2025 29 1379 1386 10.1007/s10995-025-04162-y 40944801 PMC12484261
6.de Barbeyrac C. Roth P. Noël C. Anselem O. Gaudin A. Roumegoux C. Azcona B. Castel C. Noret M. Letamendia E. PALLIMAGE Study Group. The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: A multicentre prospective cohort study BJOG 2022 129 752 759 10.1111/1471-0528.16976 34665920
7.American Academy of PediatricsPerinatal Palliative Care Pediatrics 2019 144 e20193146 10.1542/peds.2019-3146 31767713
8.Perinatal Palliative Care: ACOG COMMITTEE OPINION, Number 786 Obstet. Gynecol. 2019 134 e84 e89 10.1097/AOG.0000000000003425 31441826
9.Wilkinson D. Bertaud S. Mancini A. Murdoch E. BAPM Working GroupRecognising uncertainty: An integrated framework for palliative care in perinatal medicine Arch. Dis. Child Fetal Neonatal Ed. 2025 110 236 244 10.1136/archdischild-2024-327662 39567213
10.Integrating Palliative Care and Symptom Relief into Paediatrics A WHO Guide for Health Care Planners, Implementers and Managers 8August2018 Available online: https://www.who.int/publications/i/item/integrating-palliative-care-and-symptom-relief-into-paediatrics(accessed on 1 July 2026)
11.EFCNILatour J.M. Greisen G. Verhaest Y. Alfonso E. Bucher H.U. Caeymaex L. Cuttini M. Embleton N. Novak M. European Standards of Care for Newborn Health: Palliative Care 2018 Available online: https://newborn-health-standards.org/wp-content/uploads/2021/08/ESCNH_SiB_palliative-care.pdf(accessed on 20 September 2026)
12.Italian Society of Neonatology (SIN)Perinatal Palliative Care Study GroupItalian Society of Obstetric-Gynecological Ultrasound (SIEOG)Italian Society of Perinatal Medicine (SIMP)Italian Reccomendations for the Applications of Perinatal Palliative care in “Life Limiting Conditions” 1st ed.Italian Society of Neonatology (SIN)Milan, ItalyPerinatal Palliative Care Study GroupRoma, ItalyItalian Society of Obstetric-Gynecological Ultrasound (SIEOG)Roma, ItalyItalian Society of Perinatal Medicine (SIMP)Milano, Italy2025
13.Zanin A. Salerno A. Cavicchiolo M.E. Daicampi C. Martini B. Marinetto A. Salvadori S. Benini F. A systematic review of perinatal palliative care models: Challenges and opportunities for the future Eur. J. Pediatr. 2025 184 678 10.1007/s00431-025-06459-0 41076485 PMC12515238
14.Association of Women’s Health, Obstetric and Neonatal NursesPerinatal Palliative Care Association of Women’s Health, Obstetric and Neonatal Nurses Position Statement J. Obstet. Gynecol. Neonatal Nurs. 2023 53 e1 e3
15.Bayo Varão G. Parravicini E. Aziz A. Brady S. Perinatal palliative care in an infant with exencephaly: Supporting life beyond 3 years of age J. Neonatal Perinat. Med. 2025 18 604 610 40528317 10.1177/19345798251351003
16.Payne S. Harding A. Williams T. Ling J. Ostgathe C. Revised recommendations on standards and norms for palliative care in Europe from the European Association for Palliative Care (EAPC): A Delphi study Palliat. Med. 2022 36 680 697 10.1177/02692163221074547 35114839 PMC9006395
17.Marty C.M. Carter B.S. Ethics and palliative care in the perinatal world Semin. Fetal Neonatal Med. 2018 23 35 38 10.1016/j.siny.2017.09.001 28916237
18.Peterson J. Southwood G. Smith D.M. Johnstone E.D. Mahaveer A. A structured comparison and reflection on international position statements and professional guidance for the management of periviable infants Front. Pediatr. 2025 13 155303310.3389/fped.2025.1553033 40443577 PMC12119558
19.Dombrecht L. Chambaere K. Beernaert K. Roets E. De Vilder De Keyser M. De Smet G. Roelens K. Cools F. Components of Perinatal Palliative Care: An Integrative Review Children 2023 10 48210.3390/children10030482 36980040 PMC10047326
20.De Luca D. Modi N. Davis P. Kusuda S. de Wildt S.N. Keszler M. Abbas-Hanif A. Juul S.E. Turner M. Pillow J.J. The Lancet Child & Adolescent Health Commission on the future of neonatology Lancet Child Adolesc. Health 2025 9 578 612 10.1016/S2352-4642(25)00106-3 40580970
21.Loučka M. Zindulková M. Dvořáková H.M. Staníčková Z. Priorities for research in perinatal palliative care: An international Delphi study BMC Palliat. Care 2025 24 20210.1186/s12904-025-01845-9 40670917 PMC12265320
22.Lugli L. Rossi C. Berardi A. Pugliese M. Ceccarelli P.L. Sileo F.G. Chiossi G. Contu G. Calabrese O. La Marca A. Prenatal multidisciplinary counseling for fetal congenital anomalies: A narrative review Int. J. Gynaecol. Obstet. 2025 169 498 510 10.1002/ijgo.16068 39660910 PMC12011073
23.Goossens L. Beernaert K. Cools F. Roets E. Chambaere K. Dombrecht L. Experiences and challenges in perinatal palliative care: A qualitative study among parents and healthcare providers in regional and tertiary hospitals BMC Palliat. Care 2025 25 2710.1186/s12904-025-01939-4 41372744 PMC12838426
24.Ekberg S. Bradford N. Herbert A. Danby S. Yates P. Healthcare users’ experiences of communicating with healthcare professionals about children who have life-limiting conditions: A qualitative systematic review protocol JBI Database Syst. Rev. Implement. Rep. 2015 13 33 42 10.11124/jbisrir-2015-2413 26657462
25.Rusalen F. Cavicchiolo M.E. Lago P. Salvadori S. Benini F. Perinatal palliative care: A dedicated care pathway BMJ Support. Palliat. Care 2021 11 329 334 10.1136/bmjspcare-2019-001849 31324614
26.Lago P. Cavicchiolo M.E. Rusalen F. Benini F. Summary of the Key Concepts on How to Develop a Perinatal Palliative Care Program Front. Pediatr. 2020 8 59674410.3389/fped.2020.596744 33344387 PMC7744474
27.Korzeniewska-Eksterowicz A. Przysło Ł. Moczulska H. Development and results of perinatal palliative care program: A retrospective cohort study Eur. J. Pediatr. 2025 184 404 10.1007/s00431-025-06210-9 40488903 PMC12149248
28.Tewani K.G. Jayagobi P.A. Chandran S. Anand A.J. Thia E.W.H. Bhatia A. Bujal R. Khoo P.C. Quek B.H. Tagore S. Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions J. Palliat. Care 2022 37 471 475 10.1177/08258597211046735 34636715
29.DesJardin K. DesJardin A. Palliative Care in Neonatal Intensive Care Units for Extremely Low Birth-Weight Infants: Enhancing Quality of Life and Family-Centered Care Adv. Neonatal Care 2025 25 555 564 10.1097/ANC.0000000000001307 41187319
30.Boss R.D. Palliative care for extremely premature infants and their families Dev. Disabil. Res. Rev. 2010 16 296 301 10.1002/ddrr.123 25708072
31.Als H. Duffy F.H. McAnulty G. Butler S.C. Lightbody L. Kosta S. Weisenfeld N.I. Robertson R. Parad R.B. Ringer S.A. NIDCAP improves brain function and structure in preterm infants with severe intrauterine growth restriction J. Perinatol. 2012 32 797 803 10.1038/jp.2011.201 22301525 PMC3461405
32.Ohlsson A. Jacobs S.E. NIDCAP: A systematic review and meta-analyses of randomized controlled trials Pediatrics 2013 131 e881 e893 10.1542/peds.2012-2121 23420913
33.Infant and Family-Centered Developmental Care Available online: https://newborn-health-standards.org/standards/standards-english/infant-family-centred-developmental-care/(accessed on 18 September 2026)
34.Lugli L. Pugliese M. Bertoncelli N. Bedetti L. Agnini C. Guidotti I. Roversi M.F. Della Casa E.M. Cavalleri F. Todeschini A. Neurodevelopmental Outcome and Neuroimaging of Very Low Birth Weight Infants from an Italian NICU Adopting the Family-Centered Care Model Children 2023 11 1210.3390/children11010012 38275433 PMC10813860
35.Bedetti L. Lugli L. Bertoncelli N. Spaggiari E. Garetti E. Lucaccioni L. Cipolli F. Berardi A. Early Skin-to-Skin Contact in Preterm Infants: Is It Safe? An Italian Experience Children 2023 10 57010.3390/children10030570 36980127 PMC10047376
36.Bertoncelli N. Buttera M. Nieddu E. Berardi A. Lugli L. The Experience of Caring for a Medically Complex Child in the Neonatal Intensive Care Unit: A Qualitative Study of Parental Impact Children 2025 12 12310.3390/children12020123 40003225 PMC11854162
37.Haug S. Dye A. Durrani S. End-of-Life Care for Neonates: Assessing and Addressing Pain and Distressing Symptoms Front. Pediatr. 2020 8 57418010.3389/fped.2020.574180 33072678 PMC7542096
38.Garten L. Bührer C. Pain and distress management in palliative neonatal care Semin. Fetal Neonatal Med. 2019 24 101008 10.1016/j.siny.2019.04.008 31056417
39.Lugli L. Bariola M.C. Ferri L. Lucaccioni L. Bertucci E. Cattini U. Torcetta F. Morrone A. Iughetti L. Berardi A. Disorder of sex development associated with a novel homozygous nonsense mutation in COG6 expands the phenotypic spectrum of COG6-CDG Am. J. Med. Genet. Part A 2021 185 1187 1194 10.1002/ajmg.a.62061 33394555
40.Debillon T. Zupan V. Ravault N. Magny J.F. Dehan M. Development and initial validation of the EDIN scale, a new tool for assessing prolonged pain in preterm infants Arch. Dis. Child. Fetal Neonatal Ed. 2001 85 F36 F41 10.1136/fn.85.1.f36 11420320 PMC1721270
Come citare questo studio
Lugli L, Pugliese M, Garetti E, Nieddu E, Sileo F, Migliozzi C, Ferrari A, Culzoni F, Bertoncelli N, Berardi A, Marca A, Bertucci E. (2026). A Comprehensive Framework for Family-Centered Decision-Making in Perinatal Palliative Care: A Single Center's Clinical Perspective.. Children (Basel, Switzerland). DOI: 10.3390/children13101379
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