1. Pediatric ethics: Decision-making conflicts between parents and providers Benjamin S. Wilfond MD Director, Treuman Katz Center for Pediatric Bioethics Children ’ s Hospital and Regional Medical Center Professor and Head, Division of Bioethics Department of Pediatrics, University of Washington

2. Decision making for children for life altering choices Do Not Resuscitate(DNR) orders –6 yo with HIV and candida sepsis Withdrawal/withholding nutrition and hydration –1 wo with Down syndrome and esophageal atresia Antibiotics –10 yo with severe developmental delay and recurrent pneumonia Tracheotomy and long term mechanical ventilation –2 wo with congenital hypoventilation syndrome –2 wo with Camptomelic Dysplasia

3. AbsolutismRelativism Relationship between Parents and Providers

4. Surrogate decision making for children History of pediatric decision making in US Standards of judgment for treatment decisions Determining the appropriate decision-maker Deciding not to employ aggressive measures Tolerance of discordant views –Parental refusal of life saving treatments –Parental requests for treatment of lethal conditions The role of language in decision making

5. History of pediatric decision making Decisions to withhold treatment were routinely made by parents and physicians in the 1970s –Private decision vs public standards 1982 - “ Baby Doe ” - Down Syndrome and atresia 1984 - US Baby Doe Regulations 1985 - American Academy of Pediatrics

6. Standard of judgment for treatment Sanctity of Life Quality of Life –Independent financial stability Vs permanent coma Best interests –Life is more harmful than death from the point of view of the infant –Children in permanent coma may not have interests Relational potential –If interests can not be determined, the potential to form relationships may provide guidance

7. Who should decide? Parents Providers Government agencies Ethics committees

8. Tolerance of discordant views Parents views ProvidersViews Treat Treat Don’t Treat

9. Agreement- Don ’ t Treat Parents views ProvidersViews Treat Treat Don’t Treat

10. Deciding not to employ aggressive measures Withdrawing care has advantages over Withholding care Killing vs letting die is not a helpful disticntion Palliative care is a continuum

11. Disagreement- Parents do not want treatment Parents views ProvidersViews Treat Treat Don’t Treat

12. Can parents refuse life saving treatments? Presumption that parents should make medical decisions for children –Parents promotion of child ’ s interests (well being) –Parents self determination Prince v Massachusetts - 1944(US Supreme Court) –Obligation to protect children may override parents wishes –Freedom of religion does not include exposing child to life threatening situations American Academy of Pediatrics - (1998) –No religious exemptions for child abuse legislation

13. Considerations for overriding parental requests to refuse medical treatment Harm –Seriousness –Likelihood –Immanency Intervention –Effectiveness –Safety Alternatives –Feasibility

14. Disagreement- Parents want treatment Parents views ProvidersViews Treat Treat Don’t Treat

15. Parental request for treatment of “ lethal ” condition Which diseases are lethal? –Asthma –Diabetes –Cystic Fibrosis –Down Syndrome –Tay-Sachs –Trisomy 18 –Anencephaly What is lethality? –Likelihood of death –Duration of life –Impact of treatment –Quality of life before death –Ability to have children (Genetic leathality)

16. “ Lethal ” is a normative concept The pediatric equivalent of “ futility ” Providers may not be comfortable stating views about “ quality of life ” and the “ value ” of children with special needs Lethality medicalizes a normative statement about “ quality of life ” “ Cost ” and “ family burden ” may also used as a surrogate for “ quality of life ” Unexamined normative views about children with special needs can influence how information is conveyed

17. Familial and social obligations to children with special needs Impact on families Family obligations (and limits) Availability of services Financial costs Social obligations (and Limits)

18. Social and financial obligations to children with special needs Health care generally costs money, it does not save money –Health care resources are limited Home IV antibiotics Home mechanical ventilation –Rationing is an integral aspect of health care –“ Bedside ” rationing does not usually result in reallocation of resources to others Prioritization of services should be decided collectively –Special concerns about vulnerable populations Financial concerns are more acceptable than – “ short people got no reason to live ”

19. Provider/parent agreement Provider supports parental decision Provider/parent disagreement Provider supports parental decision Provider/parent disagreement Provider challenges parental decision Provider tolerance for disagreement: expanding the yellow zone

20. Prohibit Don ’ t Discuss Require Spectrum of approaches to influencing health related behavior ActivelyPromote ActivelyDiscourage ProvidepositiveinformationProvidenegativeinformation FinancialIncentivesFinancialDisincentives

22. The normative component of language Subjective and objective information about having children –Disadvantages of having children: Sleepless nights, toilet training, and less time for a relationship with spouse –Disadvantages of having children in Washington DC Child who may be exposed to gangs, shootings, drugs, teenage pregnancy and anthrax Information presented prenatally vs postnatally may send different messages –Down Syndrome –Cystic Fibrosis

23. The way information is presented reflects the message being sent A serious lung disease in children A common cause of hospitalization Some children may die during childhood Most children must take daily medications The disease can limit physical activity and result in frequent school absences Causes emotional and financial stress on the family A mild lung disease in children Most children are not hospitalized Many have few serious symptoms in childhood Children can use medication to control symptoms Most children lead full lives, are physically active, and can do well in school Most families learn self management of problems

24. What condition ….. ? Often associated with behavioral problems May have difficulty relating to other children May result in marital problems in parents May cause problems with siblings Proper treatment is very expensive, time consuming and rarely paid by third parties However most will become independently functioning adults

25. How to discuss differing views about treatment decisions Be aware of personal views –Even “ factual information ” may not be neutral –Language can be a powerful manipulator “ Some things must be done delicately ” –Be patient and supportive –Share concerns directly –Don ’ t offer “ artificial options ”

26. Conclusion Decision-making in the pediatric is challenging when providers and parents have different views Providers should try to be aware of own views Providers can influence decisions by how they chose to tell the story Providers should participate in broad social discussions to decide –When to support parental views –How strongly to try to persuade parents –When to actively try to prohibit parental actions