Transcript Cystic Fibrosis neonatal screening and carrier testing

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
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
Relationship between
Parents and Providers
Absolutism
Relativism
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 views
Treat
Treat
Providers
Views
Don’t
Treat
Don’t Treat
Agreement- Don’t Treat
Parents views
Treat
Treat
Providers
Views
Don’t
Treat
Don’t Treat
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
DisagreementParents do not want treatment
Parents views
Treat
Treat
Providers
Views
Don’t
Treat
Don’t Treat
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
DisagreementParents want treatment
Parents views
Treat
Treat
Providers
Views
Don’t
Treat
Don’t Treat
Parental request for treatment of
“lethal” condition
• Which diseases are lethal?
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Asthma
Diabetes
Cystic Fibrosis
Down Syndrome
Tay-Sachs
Trisomy 18
Anencephaly
• What is lethality?
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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”
Provider tolerance for disagreement:
expanding the yellow zone
Provider/parent
agreement
Provider supports
parental decision
Provider/parent
disagreement
Provider supports
parental decision
Provider/parent
disagreement
Provider challenges
parental decision
Spectrum of approaches to
influencing health related behavior
Prohibit
Actively
Discourage
Actively
Promote
Require
Don’t
Discuss
Financial
Disincentives
Financial
Incentives
Provide
negative
information
Provide
positive
information
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
The way information is presented
reflects the message being sent
A serious lung disease in children
A mild lung disease in children
A common cause of hospitalization
Most children are not hospitalized
Some children may die during
childhood
Many have few serious symptoms in
childhood
Most children must take daily
medications
Children can use medication to control
symptoms
The disease can limit physical activity Most children lead full lives, are
and result in frequent school
physically active, and can do well in
absences
school
Causes emotional and financial stress Most families learn self management of
on the family
problems
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
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”
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