Boyle Dilemmas

Ethics Dilemmas in The NICU: 

Ethics Dilemmas in The NICU Robert J. Boyle, MD Professor of Pediatrics University of Virginia

Ethics Dilemmas in the NICU: 

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

Problems Interpreting Studies: 

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

Viability: 

Viability

Gestational Age: 

Gestational Age

Gestational Age: 

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)

EPICure: Survival: 

EPICure: Survival Gestational age, completed weeks %

Slide9: 

El-Metwally D. J Peds 2000;137:616. Women and Infants’ Hosp, RI

Birth Weight: 

Birth Weight

Slide11: 

Birthweight % Survival Hack et al, Peds 1996;98:931

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

Two-Year Survival Rate of All Liveborn in the State of Victoria Victorian Inf Study Grp, Arch Dis Ch

Birthweight: 

Birthweight Can be objectively, accurately measured at birth Wide range of birth weights for any gestation Problem of the growth restricted infant

Myth: 

Myth 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.

Morbidity: 

Morbidity

Myth: 

Myth Most ELBW infants do very poorly developmentally

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

Overall Disability at 30 months for Children Born at 22 through 25 Weeks of Gestation Epicure, NEJM 343(6):378, 2000

Myth: 

Myth Most ELBW infants do very poorly developmentally The earlier the gestation for the ELBW infant, the worse the developmental outcome

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

Summary of Outcomes Among Infants Born Alive at 22 Through 25 Weeks of Gestation (Morbidity) Epicure Study Group NEJM 343(6): 378, 2000

Myth: 

Myth Severe cerebral palsy is a common outcome for this population

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

Developmental Scores and Degree and Type of Disability at 30 months According to Gestational Age Epicure, NEJM 343(6): 378, 2000

Decisions: 

Decisions

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

Can parents and clinicians make decisions about life-support for preemies? The history The 2006 reality

Dilemma #1: 

Dilemma #1 Decision before birth Infant not yet seen by parent or clinician Gestational age/ weight uncertain Prognosis poorly defined Easier Decision after birth Infant is here, before our eyes Weight certain, better idea of gestation Prognosis may be better defined Harder

Dilemma #2: 

Dilemma #2 Decision before birth 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 #3: 

Dilemma #3 Decision before birth 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

Criteria for Decisions: 

Criteria for Decisions 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

Canadian Pediatric Society and Society of Obstet&Gynecol: 

Canadian Pediatric Society and Society of Obstet&Gynecol 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

Perinatal Care on the Threshold of Viability-- AAP, 1995: 

Perinatal Care on the Threshold of Viability-- AAP, 1995 No specific gestational age or birthweight guidelines Counseling Role of families Care of baby and family if support is withheld or withdrawn

Colorado Collective for Medical Decisions: 

Colorado Collective for Medical Decisions 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

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

American Academy of Pediatrics/American Heart Association: Neonatal Resuscitation Program (2000) Noninitiation of Resuscitation in the Delivery Room is appropriate for: Newborns with confirmed gestation of less than 23 weeks or birthweight less than 400 grams

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

American Academy of Pediatrics/American Heart Association: Neonatal Resuscitation Program (2006) Guidance similar to Canadian and Colorado statements Re 23-24 weeks gestation

Myth: 

Myth 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

One Approach: 

One Approach 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