Supporting Parental Decision-Making After Life-Limiting Fetal Diagnoses: The Role of Perinatal Hospice and the NOVA-L Decision Support System

Background: Prenatal diagnosis of life-limiting fetal conditions often leads to counseling focused primarily on therapeutic abortion. Perinatal hospice has emerged as an alternative model of care for families who choose to continue the pregnancy. This paper has two primary aims. First, it discusses structured perinatal hospice programs and their role in supporting parental decision-making after such diagnoses, with attention to ethical and emotional complexities. Second, the paper introduces NOVA-L (Navigating Options & Vital Assistance for Life-limiting conditions), a conceptual Decision Support System (DSS) designed to complement perinatal hospice care. Methods: The paper provides a conceptual and descriptive analysis of the Comfort Care clinical model. It also outlines the proposed architecture of NOVA-L. DSSs combine clinical guidelines, research data, and outcome registries on digital platforms, providing evidence-based information and AI-supported analytical tools. Their potential adaptation to perinatal hospice care is explored. Results: The Comfort Care model involves interdisciplinary counseling, structured communication, and psychosocial support to facilitate clarification of parental values and care pathways. NOVA-L is presented as a complementary tool that may enhance transparency in risk evaluation and option comparison through accessible interfaces under professional supervision. Conclusions: Structured perinatal hospice programs may enhance clarity and compassion in decision-making. The conceptual integration of AI-supported DSS tools, such as NOVA-L, could strengthen ethically grounded, emotionally sensitive parental support.

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Publication Details

Journal
Healthcare
Published
2026-05-29
DOI
https://doi.org/10.3390/healthcare14111516
Primary Topic
Neonatal Respiratory Health Research
Type
article
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article

Supporting Parental Decision-Making After Life-Limiting Fetal Diagnoses: The Role of Perinatal Hospice and the NOVA-L Decision Support System

Margherita Dahò
Healthcare
Neonatal Respiratory Health Research
article

Supporting Parental Decision-Making After Life-Limiting Fetal Diagnoses: The Role of Perinatal Hospice and the NOVA-L Decision Support System

Margherita Dahò
article en

Abstract

Background: Prenatal diagnosis of life-limiting fetal conditions often leads to counseling focused primarily on therapeutic abortion. Perinatal hospice has emerged as an alternative model of care for families who choose to continue the pregnancy. This paper has two primary aims. First, it discusses structured perinatal hospice programs and their role in supporting parental decision-making after such diagnoses, with attention to ethical and emotional complexities. Second, the paper introduces NOVA-L (Navigating Options & Vital Assistance for Life-limiting conditions), a conceptual Decision Support System (DSS) designed to complement perinatal hospice care. Methods: The paper provides a conceptual and descriptive analysis of the Comfort Care clinical model. It also outlines the proposed architecture of NOVA-L. DSSs combine clinical guidelines, research data, and outcome registries on digital platforms, providing evidence-based information and AI-supported analytical tools. Their potential adaptation to perinatal hospice care is explored. Results: The Comfort Care model involves interdisciplinary counseling, structured communication, and psychosocial support to facilitate clarification of parental values and care pathways. NOVA-L is presented as a complementary tool that may enhance transparency in risk evaluation and option comparison through accessible interfaces under professional supervision. Conclusions: Structured perinatal hospice programs may enhance clarity and compassion in decision-making. The conceptual integration of AI-supported DSS tools, such as NOVA-L, could strengthen ethically grounded, emotionally sensitive parental support.

HealthcareVol. 14(11)
University of Palermo (IT)
Peace, Justice and strong institutions
Openalex Percentile: Top 6%
Neonatal Respiratory Health Research
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