One of the most difficult decisions that can confront a family is what medical treatment to seek for an extremely premature infant at the threshold of viability. The complexity of the treatment options, competing interests of healthcare providers and the family, consideration of the parents' values, and the sheer immensity of making decisions that affect such a new and fragile life all converge on parents when making such decisions. Overlying this are the legal context and the healthcare professionals and institutions that often may have more direct control and impact on those decisions than the parents. In the United States, the law since the so-called baby doe regulations has not provided much in the way of consistent guidance. Federal attempts to micromanage the decision-making process and draw bright lines have largely failed. Conflicts between the competing interests sometimes end up in court, and the law is developing state by state with widely varying results. Parental consent to treatment of their infants is at the crux of these conflicts. Part I of this article discusses the evolving legal landscape of decision making for treatment of infants at the threshold of viability. Part II will address informed consent and the fundamental role nurses can play in creating a collaborative decision-making process that respects the best interests of the infant and the family.

Child↗

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The legal landscape at the threshold of viability for extremely premature infants: a nursing perspective, part II.

This is the second of a 2-part article exploring the legal landscape overlying the difficult decisions that can confront a family with an extremely premature infant at the threshold of viability. In Part I, recent legal regulations and litigation were analyzed to show that the baby doe regulations are largely inert and that recent litigation arises out of state laws and regulations. Part II takes up the analysis to show that the common thread through all these conflicts, and the subsequent litigation, is a failure to obtain parental consent for the course of treatment at issue. The author argues that the central focus of all parties seeking to minimize legal risks in these situations must be on creating a transparent decision-making process that includes the parents from the onset. Nurses play a pivotal role in that process and are supported broadly by the professional guidelines of the American Nurses Association, the Association of Women's Health Obstetric and Neonatal Nurses, the National Association of Neonatal Nurses, the American Academy of Pediatrics, and the Principles of Family-Centered Neonatal Care.

Fetal Viability↗

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One size does not fit all: parents' evaluations of a support program in a newborn intensive care nursery.

UNLABELLED: As intensive care nursery personnel increasingly seek to provide comprehensive care to families, there is a renewed emphasis on offering family support programs. PURPOSE: The purpose of this study was to identify parents' utilization and evaluation of a support program based in a newborn intensive care unit (NICU) that offered a combination of formats for support services: group support, one-to-one support, and telephone support. METHODS: Program records and a survey developed by the author documented parental use and evaluation of services. Data analysis consisted of descriptive statistics and qualitative content analysis of demographic data, survey results, and parental comments. RESULTS: Of the total 477 participants, 78% utilized 1 support service format exclusively. Eighteen percent utilized 2 support formats concurrently. A subsample of 48 parents completed an evaluation survey. Continuity of care was a critical component of the program overall. Group support offered more opportunities for families to problem-solve communication issues with nursery personnel and provide information that assisted parents' involvement in their babies' care. CONCLUSIONS: Parent support programs that utilize only one type of format may not be optimal for providing the range of support needed by many NICU families. Parent support programs offer an important mechanism to assess provider approaches to facilitate family-centered care.

Adult↗

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Imposed burdens: a Mexican American mother's experience of family resources in a newborn intensive-care unit.

OBJECTIVE: A case study analysis examines how the availability of resources to ensure family-centered care (FCC) in a newborn intensive-care unit (NICU) affected one Latina mother's NICU experience. DESIGN: Case study analysis. SETTING: An NICU in the western United States. SAMPLE: A mother of Mexican American heritage, bilingual in Spanish and English. MAIN OUTCOME MEASURE: Audiotaped interviews and field notes of the mother's descriptions, actions, and evaluation surrounding family resources in the NICU were analyzed using narrative and content analysis. RESULTS: Inadequate resources to facilitate the provision of FCC in the NICU resulted in a complex set of interrelationships and situations in which providers and other Latina mothers, with varying personal resources, called upon the mother to fill in the resource gaps. Important areas of work of the NICU were shifted to the Latina mothers differentially based on their personal resources. These areas of work included facilitation of families' access to their babies, interpretation, information and emotional support, and elements of discharge planning and teaching. CONCLUSIONS: Adequate resources to ensure FCC in the NICU is highly relevant to the care of all families. Nurses must ground their advocacy in actions that help secure needed resources without shifting responsibility to other NICU families.

Adaptation, Psychological↗