2. October 2005 Decisions in the Face of Uncertainty Sharon E. Gregory RNC, MN Dekalb Medical Center Perinatal Loss Coordinator

3. BABY G 23 week 23 week DNR per parents DNR per parents Staff and family discomfort with “living baby” Staff and family discomfort with “living baby” Died at 10 hours Died at 10 hours

4. BABY M 23 week 23 week Do everything Do everything NICU: Dopamine, steroids, Grade III IVH; PHH, CONS, Thrombocytopenia NICU: Dopamine, steroids, Grade III IVH; PHH, CONS, Thrombocytopenia MD told parents DNR MD told parents DNR Died at 27 days Died at 27 days

5. Beneficence -Do Good Give life a chance Give life a chance Time for parents to bond Time for parents to bond Comfort care Time for parents to grieve

6. Nonmaleficence – Do no Harm Nonmaleficence – Do no Harm Ventilation - progress IVH? Ventilation - progress IVH? Resuscitation futile Resuscitation futile Prolonging Death Prolonging Death Non intervention Non intervention Don’t start resuscitation late Don’t start resuscitation late

7. Justice Fairness Use of resources equally Policy vs. individual How much does it cost?

8. Autonomy Parents = infant’s legal decision maker Parents = infant’s legal decision maker Physician = medical care giver Physician = medical care giver Best interest for the infant. Best interest for the infant. Multifactorial and uncertain outcomes Multifactorial and uncertain outcomes Courts uphold the parents rights Courts uphold the parents rights

9. Video Parents at the Threshold You Are Not Alone

10. NRP Chapter 9 Ethics and Care at End of Life Ethical principles same as for older child or adult. Ethical principles same as for older child or adult. No mandate to resuscitate in all circumstances. No mandate to resuscitate in all circumstances. OB dating +/= 2 weeks OB dating +/= 2 weeks Withdrawal of resuscitation or critical care are acceptable with parental agreement if futile, prolonging dying or benefit does not justify burden imposed. Withdrawal of resuscitation or critical care are acceptable with parental agreement if futile, prolonging dying or benefit does not justify burden imposed.

11. NRP Chapter 9 Ethics and Care at End of Life If gestation(< 22 wks), birth weight (< 400 g) or lethal congenital anomalies associated with certain early death or unacceptably high morbidity, resuscitation is not indicated. Exceptions may be reasonable to comply with parental wishes. If gestation(< 22 wks), birth weight (< 400 g) or lethal congenital anomalies associated with certain early death or unacceptably high morbidity, resuscitation is not indicated. Exceptions may be reasonable to comply with parental wishes.

12. Decision Factors Prognosis Prognosis MortalityMortality High survival - > 25 weeks High survival - > 25 weeks Uncertain survival – 22-25 wks Uncertain survival – 22-25 wks Low survival - < 22 wks; lethal anomalies Low survival - < 22 wks; lethal anomalies MorbidityMorbidity Low – Low – Uncertain Uncertain High < 25 weeks High < 25 weeks

13. Decision Factors Parent response Parent response ResuscitateResuscitate Comfort CareComfort Care Medical response Medical response ResuscitateResuscitate EvaluateEvaluate Withdraw if no improvement Withdraw if no improvement Continue Continue Comfort CareComfort Care

14. Keys to good ethical practice Inform the parents Inform the parents.Listen to the parents.Listen to the parents.Provide quality care.Provide quality care.Stick to the facts.Stick to the facts.Do not try to impose your values on the situation.Do not try to impose your values on the situation Respect that this is rarely an easy decision for anyone. Respect that this is rarely an easy decision for anyone.

15. Effects on staff Workload Workload Leave infant with parents Leave infant with parents Prolonged dying is hard to watch Prolonged dying is hard to watch Avenues for staff to express views Avenues for staff to express views Be creative – acknowledging grief by memorials, good bye notes, journal for the parents. Be creative – acknowledging grief by memorials, good bye notes, journal for the parents. Options for staff opposed to DNR or prolonged dying. Options for staff opposed to DNR or prolonged dying.

16. Conclusions Ethical care is well informed parents Ethical care is well informed parents All caregivers on the same page All caregivers on the same page Avoid mixed messages: Avoid mixed messages: Respect the parents. Respect the parents. Do what is reasonable quality care. Do what is reasonable quality care.

17. God grant me the SERENITY to prioritize the things I cannot delegate, the COURAGE to say no when I need to, and the WISDOM to know when to go home!