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
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Pediatric ethics: Decision-making conflicts between parents and providers Benjamin S. Wilfond MD Director, Treuman Katz Center for Pediatric Bioethics.
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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 BioethicsDepartment of Pediatrics, University of Washington
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
Absolutism Relativism
Relationship between Relationship between Parents and ProvidersParents and Providers
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
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
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
Who should decide?
• Parents
• Providers
• Government agencies
• Ethics committees
Tolerance of discordant views
Parents viewsParents views
ProvidersProvidersViewsViews
TreatTreat
TreatTreat
Don’t Don’t TreatTreat
Don’tDon’t TreatTreat
Agreement- Don’t Treat
Parents viewsParents views
ProvidersProvidersViewsViews
TreatTreat
TreatTreat
Don’t Don’t TreatTreat
Don’tDon’t TreatTreat
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
Disagreement- Parents do not want treatment
Parents viewsParents views
ProvidersProvidersViewsViews
TreatTreat
TreatTreat
Don’t Don’t TreatTreat
Don’tDon’t TreatTreat
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
Considerations for overriding parental requests to refuse medical treatment
• Harm– Seriousness– Likelihood– Immanency
• Intervention– Effectiveness– Safety
• Alternatives– Feasibility
Disagreement- Parents want treatment
Parents viewsParents views
ProvidersProvidersViewsViews
TreatTreat
TreatTreat
Don’t Don’t TreatTreat
Don’tDon’t TreatTreat
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)
“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
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)
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”