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”

Provider/parent Provider/parent agreementagreementProvider supports Provider supports parental decisionparental decision

Provider/parent Provider/parent disagreementdisagreementProvider supports Provider supports parental decisionparental decision

Provider/parent Provider/parent disagreementdisagreementProvider challenges Provider challenges parental decisionparental decision

Provider tolerance for disagreement: expanding the yellow zone

ProhibitProhibit

Don’tDon’tDiscussDiscuss

RequireRequire

Spectrum of approaches to Spectrum of approaches to influencing health related behaviorinfluencing health related behavior

ActivelyActivelyPromotePromote

Actively Actively DiscourageDiscourage

Provide Provide positivepositive

informationinformation

ProvideProvidenegative negative

informationinformation

FinancialFinancialIncentivesIncentives

FinancialFinancialDisincentivesDisincentives

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 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

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