2. Ethical Dilemmas of the Marginally Viable Fetus D. Micah Hester, Ph.D. Asst. Prof. of Medical Humanities UAMS/Arkansas Children’s Hospital 21 st Annual Conference on Perinatal Care Friday, February 18, 2005

3. What is at Issue?  Intervention If so, what? If not, why not?  Withholding If so, what and why?

4. Decisions Concerning Intervention Who decides? Parents Physicians Medical staff/administration State How do we decide? Medical knowledge Hospital policy Legal requirements Ethical/Religious values

5. Alternative views on moral status… Inherent worth of human life Sanctity Personhood Moral agency

6. Ethical Alternatives Ethic of agency Individual choosing and acting Ethic of interests Substituted judgment “Best” interest Ethic of the ordinary Ordinary v. extraordinary Ethic of care – taking relations seriously “With” v. “For” Familial/communal responsibility

7. Care in Peri- and Neonatology… Four senses of ‘Care’ To care for = liking To have care of = watch-care over To care about = to be bound up with To care that = S is invested (whether directly or emotionally) in x

8. HOW do you care for kids?… “Having care of” and “caring about” Mothers Children (fetal or neonatal) Families Yourself Holding on v. letting go Conservative approach Doing to v. doing for Reassessment and readjustment

9. …HOW do you care for kids?… COMMUNICATION Don’t speculate Respect grieving Give time and space Inclusive, not exclusive Be sensitive, imaginative, creative, inventive, artful

10. Can Policy Help?  Pros Defines limits Clearly explains procedure  Cons Makes an a priori global statement Seems weighted towards institutional interests

11. Sample NICU Resuscitation Policy Purpose To establish guidelines for resuscitation of premature infants; see attached algorithm. Policy All deliveries at less than or equal to 27 weeks gestational age should have a neonatologist consult documented on the maternal record. Any resuscitation efforts on a child 27 weeks or younger gestational age (either by policy or request) should be led by a neonatologist at the delivery. Resuscitation will be actively pursued for all infants who… …are 25 weeks or greater, when gestational age is known. OR …have a birth weight greater than 500 grams, when gestational age is unknown or unsure. Given the high degree of uncertainty concerning mortality and morbidity with infants who are 23 to 25 weeks gestational age: A decision concerning resuscitation should be sought between the parent(s) and neonatologist. Appropriate education and counseling should be provided for parents. When gestational age is known to be less than 23 weeks or, if gestational age is unknown, birth weight is less than 500 grams, resuscitation will not be actively pursued unless signed consent from the parent(s) is obtained. In order to help the parent(s) make such a decision, the following must occur: Discuss in detail national and institutional survival and morbidity rates. Explain the experimental nature of any resuscitation attempts. All babies who will have no resuscitation efforts made will be provided with comfort and compassionate care which includes: Provision of warmth. Relief of pain. The opportunity for the parent(s) to hold and keep the baby with them while care is given. The offer to the parent(s) for follow-up grief support and counseling on the nature of the problem and the chance of recurrence. In the event of disagreement about these decisions, supportive treatment should continue pending consultation with the hospital ethics committee.

12. Sample Parental Consent for Resuscitation Consent for Resuscitation and Treatment I understand that… …the resuscitation of extremely immature infants with gestational age of less than 23 weeks, or a birth weight less than 500 grams (1 pound 2 ounces) when gestational age is not known, is considered experimental. …the survival of infants with a gestational age less than 23 weeks, or birth weight of less than 500 grams when the gestational age is not known, is reported to be between 10-15% nationally. …this Center’s survival rate for this group of patients is comparable to national numbers. Further, I recognize that… …morbidity ( which includes such conditions as mental retardation, severe cerebral palsy, blindness or deafness) is seen in greater than 50% of survivors with a gestational age less than 23 weeks or birth weight less than 500 grams when gestational age is not known. Also, I know that… …despite all efforts by the resuscitation team, my child may not survive the delivery. …if resuscitation is successful, my infant will be admitted to the intensive care nursery where treatment will continue and further testing will be performed. …I will be kept informed of all changes. Finally, I state that… …before signing or declining this form, that I have been given and have taken the appropriate time to read, reflect on, and ask questions about this information and the specifics of my child’s condition. In this light, I have read the above information, and in consultation with appropriate individuals, request that, though experimental, efforts to resuscitate my child be performed by the neonatology staff at this Center.