1. Shedding Light on the Gray Zone: How much discretion should parents have about life-sustaining treatment for newborn infants with birth asphyxia? Dominic Wilkinson Oxford Nuffield Medical Research Fellow James Martin 21st Century School Fellow University of Oxford

2. Case Is it permissible to withdraw? Is it permissible to continue treatment? University Hospitals Bristol NHS Foundation Trust/PA Wire Rutherford Seminars in fetal & neonatal medicine (2005) vol. 10 (5) pp. 445-60 Shedding Light on the Gray Zone

3. Introduction “The treatment of infants should be based on what is perceived to be in their best interest.” Pediatrics 2007;119:403

4. The Zero line view 0 Interests Life worth living (LWL) Life not worth living (LNWL) “Intolerable” Burdens > Benefits Shedding Light on the Gray Zone

5. The gray zone “The treatment of infants should be based on what is perceived to be in their best interest.” Pediatrics 2007;119:403 “[where] the prognosis is uncertain but likely to be very poor and survival may be associated with a diminished quality of life for the child… parental desires should determine the treatment approach.” Shedding Light on the Gray Zone ?????

6. Outline What is the gray zone? Why is there a gray zone? Are newborns different? Where are the edges of the gray zone? Shedding Light on the Gray Zone ?????

7. The gray zone Cases or conditions where it would be permissible either to withdraw life-sustaining treatment, or to continue life-sustaining treatment and parental wishes may determine decision Shedding Light on the Gray Zone

8. Different gray zones 0000 Shedding Light on the Gray Zone

9. The Threshold view 0 Interests Upper Threshold Lower Threshold Shedding Light on the Gray Zone

10. 0 Interests Why parental discretion? Overlapping interests Shedding Light on the Gray Zone

11. 0 Interests Why parental discretion? Overlapping interests Uncertainty LWL LNWL Shedding Light on the Gray Zone

12. 0 Interests Why parental discretion? Overlapping interests Uncertainty Liberalism Shedding Light on the Gray Zone

13. 0 Interests Why parental discretion? Overlapping interests Uncertainty Liberalism Parental interests ? Shedding Light on the Gray Zone

14. Are newborns different? Uncertainty? Duration of uncertain prognosis? Strength of parental rights or interests? Harm of death? ????? Shedding Light on the Gray Zone

15. Where are the edges of the gray zone? Vagueness Incommensurability Too hard? Shedding Light on the Gray Zone ?????

16. Where are the edges of the gray zone? Normative criteria: Upper Threshold Treatment withdrawal is permissible for infants with conditions that: C1. Reduce future wellbeing, either by reducing benefits or by imposing substantial burdens on the child (or both) AND C2. Are close to the level of a LNWL, AND EITHER C3. Involve a significant risk of a LNWL OR C4. Impose a substantial burden of care on others ????? Shedding Light on the Gray Zone

17. Where are the edges of the gray zone? Normative criteria: Lower Threshold Treatment withdrawal is not permissible for infants with conditions that: C1. Reduce future wellbeing, either by reducing benefits or by imposing substantial burdens on the child (or both) AND C5. Render it highly likely that the infant will have a LNWL and be harmed by continuing treatment ????? Shedding Light on the Gray Zone

18. Where are the edges of the gray zone? Practical criteria: Interests 0 Severe Cerebral palsy / Severe Cognitive impairment Multiple severe impairments - especially combined with ongoing painful illness or medical intervention Moderate impairments Shedding Light on the Gray Zone

19. Advantages of this account  Avoids claim that severe impairments are LNWL  Allows scope for parental discretion  Advantages for care of older children  More consistency in decision-making Shedding Light on the Gray Zone ?????

20. Acknowledgements Professor Tony Hope Professor Julian Savulescu  Nuffield Dominions Trust (Oxford Nuffield Medical Fellowship)  Eric Burnard Fellowship  RACP Astra-Zeneca Medical Fellowship  Royal Children’s Hospital Traveling Scholarship Questions, comments suggestions? dominic.wilkinson@ethox.ox.ac.uk Shedding Light on the Gray Zone