Ethics Dilemmas in The NICU

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

3. 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

4. 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

5. Viability

6. Gestational Age

7. 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)

8. EPICure: Survival % Gestational age, completed weeks

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

10. Birth Weight

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

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

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

15. 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.

17. Morbidity

18. Myth • Most ELBW infants do very poorly developmentally

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

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

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

22. Myth • Severe cerebral palsy is a common outcome for this population

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

24. Decisions

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

26. 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 #1

27. 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 #2

28. 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 Dilemma #3

29. 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

30. 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

31. 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

32. 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

33. 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

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

35. 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

36. 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