Decision Zone at the Margins of Life and Good Health: The Role of Medical Staff Guidelines for the Care of Extremely Early Gestation Pregnancies and Premature Infants

Dirksen, Kevin M.; Kaempf, Joseph W.; Tomlinson, Mark; Schmidt, Nicole

doi:10.1080/15265161.2016.1251634

Cited by 3 publications

(2 citation statements)

References 4 publications

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“…Although neonatologists appreciate that there are important considerations beyond gestational age (9). they continue to request standardized periviable age-based guidelines (37,38). A major impetus for guidelines is to provide a standard for what would be considered significant medical benefit, as well as providing equitable care for all EPIs within a geographical area, with consistency in counseling from Neonatologists and between Neonatologists and Perinatologists (39).…”

Section: Models For Decision-makingmentioning

confidence: 99%

The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

Albersheim

2020

Front. Pediatr.

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Care of the preterm infant has improved tremendously over the last 60 years, with attendant improvement in outcomes. For the extremely preterm infant, <28 weeks' gestation, concerns related to survival as well as neurodevelopmental impairment, have influenced decision-making to a much larger extent than seen in older children. Possible reasons for conferring a different status on extremely preterm infants include: (1) the belief that the brain is a privileged organ, (2) the degree of medical uncertainty in terms of outcomes, (3) the fact that the family will deal with the psychological, emotional, physical, and financial consequences of treatment decisions, (4) that the extremely preterm looks more like a fetus than a term newborn, (5) the initial lack of relational identity, (6) the fact that extremely preterm infants are technology-dependent, and (7) the timing of decision-making around delivery. Treating extremely preterm infants differently does not hold up to scrutiny. They are owed the same respect as other pediatric patients, in terms of personhood, and we have the same duties to care for them. However, the degree of medical uncertainty and the fact that parents will deal with the consequences of decision-making, highlights the importance of providing a wide band of discretion in parental decision-making authority. Ethical principles considered in decision-making include best interest (historically the sine qua non of pediatric decision-making), a reasonable person standard, the "good enough" parent, and the harm principle, the latter two being more pragmatic. To operationalize these principles, potential models for decision-making are the Zone of Parental Discretion, the Not Unreasonable Standard, and a Shared Decision-Making model. In the final analysis shared decision-making with a wide zone of parental discretion, which is based on the harm principle, would provide fair and equitable decision-making for the extremely preterm infant. However, in the rare circumstance where parents do not wish to embark upon intensive care, against medical recommendations, it would be most helpful to develop local guidelines both for support of health care practitioners and to provide consistency of care for extremely preterm infants.

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Section: Models For Decision-makingmentioning

confidence: 99%

The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

Albersheim

2020

Front. Pediatr.

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“…Several studies underscore the potential for clinician bias to impact patient care; clinician teams should consider evidence-based, consistent protocols to standardize clinical decision-making about these patients from the moment that they present for care (Arthur & Gupta, 2017;Thorvilson & Copeland, 2018). The study of Kaempf et al, regarding treatment decisions for extremely premature infants, suggest that clinical protocols for ethically complex medical care can and do make prenatal and postnatal care more medically and ethically consistent (Dirksen, Kaempf, Tomlinson, & Schmidt, 2017).…”

mentioning

confidence: 99%

Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18

Neubauer

Boss

2020

American J of Med Genetics Pt C

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Medical and surgical approaches to children with trisomy 13 and 18 are evolving, and an increasing number of patients are being considered for simple and complex cardiac procedures. This review describes how the shifts in medical and social considerations for children with trisomy 13 and 18 mirror the shifts that occurred 50 years ago for children with trisomy 21. Yet the variability in cardiac lesions, and variability in non‐cardiac comorbidities, is much greater for patients with trisomy 13 and 18 than for those with trisomy 21. That variability, combined with the severe neurologic impairment in survivors, complicates the current risk: benefit balance of surgical intervention. Consistent approaches to care for these patients should be built on an evidence base, and should include contributions from specialists in medical ethics and palliative care.

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Periviability in a Pandemic: Good Ethics Still Considered Essential

Dirksen

Kaempf

Kockler

2020

The American Journal of Bioethics

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Decision Zone at the Margins of Life and Good Health: The Role of Medical Staff Guidelines for the Care of Extremely Early Gestation Pregnancies and Premature Infants

Cited by 3 publications

References 4 publications

The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

Ethical considerations for cardiac surgical interventions in children with trisomy 13 and trisomy 18

Periviability in a Pandemic: Good Ethics Still Considered Essential

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