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Ethics Dilemmas in The NICU. Robert J. Boyle, MD Professor of Pediatrics University of Virginia. Ethics Dilemmas in the NICU. Focus on the Premature Infant, esp ELBW Viability Long-term morbidity Myths and Realities Decisions Risk vs reality How much disability is “too much”

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Ethics Dilemmas in The NICU

Robert J. Boyle, MD

Professor of Pediatrics

University of Virginia

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Ethics Dilemmas in the NICU

  • Focus on the Premature Infant, esp ELBW

  • Viability

  • Long-term morbidity

  • Myths and Realities

  • Decisions

    • Risk vs reality

    • How much disability is “too much”

    • How decisions can be/should be/are made

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Problems Interpreting Studies

  • Outcome data clouded by “decisional filter”-- infants not resuscitated intentionally based on family or MD decision

  • No indication of “technical issues”-- eg, couldn’t be intubated

  • Data is 3-5 years old; neurodevelopmental data even older

  • Definition of morbidity: “intact”, mild vs mod, blind, CP, learning disability, ADD

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Gestational Age

  • Except in rare circumstances, we do not know the gestational age within 1-2 weeks

  • Ultrasound, especially early in third trimester, is not exact enough for those determinations

  • We fool ourselves and our patients when we use terminology like “23 and 4/7 weeks”

  • We aren’t much better after the baby is born (Ballard exam)

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EPICure: Survival


Gestational age, completed weeks

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El-Metwally D. J Peds 2000;137:616.

Women and Infants’ Hosp, RI

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Hack et al, Peds 1996;98:931

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Two-Year Survival Rate of All Liveborn in the State of Victoria

Victorian Inf Study Grp, Arch Dis Ch

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Birthweight Victoria

  • Can be objectively, accurately measured at birth

  • Wide range of birth weights for any gestation

  • Problem of the growth restricted infant

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Myth Victoria

  • ELBW infants are critically ill for months, and then die. Exposes the infant and family to prolonged suffering/anxiety

  • Most of the mortality is in the first few days

  • Obviously affected by approach to decision making when prognosis poor.

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Morbidity Victoria

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Myth Victoria

  • Most ELBW infants do very poorly developmentally

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Overall Disability at 30 months for Children Born at 22 through 25 Weeks of Gestation

Epicure, NEJM 343(6):378, 2000

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Myth through 25 Weeks of Gestation

  • Most ELBW infants do very poorly developmentally

  • The earlier the gestation for the ELBW infant, the worse the developmental outcome

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Summary of Outcomes Among Infants Born Alive at 22 Through 25 Weeks of Gestation (Morbidity)

Epicure Study Group NEJM 343(6): 378, 2000

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Myth 25 Weeks of Gestation (Morbidity)

  • Severe cerebral palsy is a common outcome for this population

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Developmental Scores and Degree and Type of Disability at 30 months According to Gestational Age

Epicure, NEJM 343(6): 378, 2000

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Decisions months According to Gestational Age

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Can parents and clinicians make decisions about life-support for preemies?

  • The history

  • The 2006 reality

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Decision before birth for preemies?

Infant not yet seen by parent or clinician

Gestational age/ weight uncertain

Prognosis poorly defined


Decision after birth

Infant is here, before our eyes

Weight certain, better idea of gestation

Prognosis may be better defined


Dilemma #1

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Decision before birth for preemies?

Decision based on a risk of handicap, potentially a very mild handicap

Decision after birth

Decision based on a defined handicap or better defined risk of handicap

Dilemma #2

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Decision before birth for preemies?

To do nothing is always easier

Prevents the infant’s pain/suffering

Prevents the parents’ anxiety

What gestational age or weight should one choose?

Decision after birth

Withdrawal, while philosophically better, always more difficult for family and clinicians

May come after weeks/months of care

Reach point where outcome poor but nothing to withdraw

What criteria are used to decide

Dilemma #3

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Criteria for Decisions for preemies?

  • Pain and suffering/ Benefit vs Burden

  • Low probability of survival

  • Risk of developmental morbidity

    • How much risk is too much

    • How much morbidity is too much

  • Disability rights and ethics interests

  • Effect on family

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Canadian Pediatric Society and Society of Obstet&Gynecol for preemies?

  • 22 weeks– treatment should be started only at the request of fully informed parents or if it appears the gest age underestimated

  • 23-24 weeks– role for parental wishes, option of resuscitation, need for flexibility, depending on infant’s condition at birth

  • 25 weeks– resuscitation should be attempted for all infants without fatal anomalies

CMAJ, 1994

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Perinatal Care on the Threshold of Viability-- AAP, 1995 for preemies?

  • No specific gestational age or birthweight guidelines

  • Counseling

  • Role of families

  • Care of baby and family if support is withheld or withdrawn

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Colorado Collective for Medical Decisions for preemies?

  • 22 weeks– comfort care only appropriate choice

  • 23 weeks– most would advise comfort care, but if parents understood the high risks, would be willing to initiate course of intensive care

  • 24 weeks– able to support either decision, as long as a collaborative process with good information sharing occurred

  • 25 weeks– uncomfortable with withholding care, and some were willing to support a parental request for comfort care, if there had been good education and an effort at collaboration

Colorado Collective, 2000

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American Academy of Pediatrics/American Heart Association: Neonatal Resuscitation Program (2000)Noninitiation of Resuscitation in the Delivery Room is appropriate for:

  • Newborns with confirmedgestation of less than 23 weeks or birthweight less than 400 grams

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American Academy of Pediatrics/American Heart Association: Neonatal Resuscitation Program (2006)

  • Guidance similar to Canadian and Colorado statements

    • Re 23-24 weeks gestation

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Myth Neonatal Resuscitation Program (2006)

  • Conflicts (Miller, Messenger) with parents refusing and clinicians opposing the refusal are common

  • Parents requesting/demanding resuscitation and continuing care while clinicians are recommending withholding/withdrawal is a much more common scenario

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One Approach Neonatal Resuscitation Program (2006)

  • Antenatally and peripartum: Discuss the mortality and morbidity data for range of gestations and the vagaries of gest age

  • Prefer not to make decisions prior to birth, except in well defined, extreme situations (21-22 weeks, lethal anomalies)

  • Ask to assess infant in DR and NICU; experienced clinician

  • Leave open option of stopping if prognosis is poor

  • Continuous, ongoing communication with family