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Ethical issues about children with special needs: Decision-making by parents and providers. Benjamin Wilfond MD Social and Behavioral Research Branch National Human Genome Research Institute Department of Clinical Bioethics Warren G Magnuson Clinical Center

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ethical issues about children with special needs decision making by parents and providers

Ethical issues about children with special needs: Decision-making by parents and providers

Benjamin Wilfond MD

Social and Behavioral Research Branch

National Human Genome Research Institute

Department of Clinical Bioethics

Warren G Magnuson Clinical Center

National Institutes of Health

Bethesda, MD 20892

decision making for children with special needs
Decision making for children with special needs
  • DNR orders
    • 6 yo s/p BMT, candida sepsis
  • Withdrawal/ withholding nutrition and hydration
    • 1 wo, Down syndrome, esophageal atresia
  • Antibiotics
    • 10 yo, severe developmental delay, recurrent pneumonia
decision making for children with special needs3
Decision making for children with special needs
  • Tracheotomy and/or long term mechanical ventilation
    • 2 wo with congenital hypoventilation syndrome
    • 2 wo with Camptomelic dysplasia
    • 8 yo year old with Hurler syndrome
    • 26 yo with hyper IgE recurrent infection syndrome
slide4
Absolutism

Relativism

Relationship between Parents and Providers

surrogate decision making for children with special needs
Surrogate decision making for children with special needs
  • History of pediatric decision making
  • Standards of judgment for treatment
  • Who should decide
  • 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
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 - Baby Doe Regulations
  • 1985 AAP recommendations
standard of judgment for treatment
Standard of judgment for treatment
  • Sanctity of Life
  • Quality of Life
    • Independent financial stability Vs permanent coma
  • Best interests
    • Life is worse than death from the point of view of the infant
    • Does not address children in permanent coma
  • Relational potential
    • If interests can not be determined, the potential to form relationships may provide guidance
who should decide
Who should decide
  • Parents
  • Providers
  • Government agencies
  • Ethics committees
tolerance of discordant views
Tolerance of discordant views

Parents views

Treat

Dont Treat

Treat

Providers

Views

Dont Treat

agreement don t treat
Agreement- Don’t Treat

Parents views

Treat

Don’t treat

Treat

Providers

Views

Don’t treat

deciding not to employ aggressive measures
Deciding not to employ aggressive measures
  • Withholding and withdrawing
  • Killing vs letting die
  • Palliative care
disagreement treat don t treat
Disagreement- Treat/Don’t Treat

Parents views

Treat

Do not treat

Treat

Providers

Views

Do not treat

can parents refuse life saving treatments
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
    • Obligation to protect children may override parents wishes
    • Freedom of religion does not include exposing child to life threatening situations
  • AAP- (1998)
    • No religious exemptions for child abuse legislation
considerations for overriding parental requests to refuse medical treatment
Considerations for overriding parental requests to refuse medical treatment
  • Harm
    • Seriousness
    • Likelihood
    • Eminency
  • Intervention
    • Effectiveness
    • Safety
  • Alternatives
    • Feasibility
disagreement don t treat treat
Disagreement- Don’t Treat/Treat

Parents views

Treat

Do not treat

Treat

Providers

Views

Do not treat

parental request for treatment of lethal condition
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
    • Duration
    • Impact of treatment
    • Quality of life
    • Genetic
familial and social obligations to seriously ill and disabled newborns
Familial and social obligations to seriously ill and disabled newborns
  • Financial costs
  • Availability of services
  • Impact on families
  • Family duties
  • Limits of social obligations
social and financial obligations to children with special needs
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 of health care already occurs
    • Bedside rationing does not usually result in reallocation
  • Prioritization of services needs to be made 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 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

how to approach differing views about treatment decisions
How to approach differing views about treatment decisions
  • Some things must be done delicately-Wayne Morgan(citing the wicked witch of the west)
  • Language can be a powerful manipulator
  • Even “factual information” may not be neutral
slide22
Alternative approaches to

influencing health related behavior

Actively

Discourage

Actively

Promote

Prohibit

Require

Don’t

Discuss

Financial

Disincentives

Financial

Incentives

Provide

negative

information

Provide

positive

information

the normative component of language
The normative component of language
  • Objective and subjective 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
information always sends a message
Information always sends a message
  • Often associated with behavioral problems
  • May have difficulty relating to other children
  • Proper treatment is very expensive, time consuming and rarely paid by third parties
  • May result in marital problems in parents
  • May cause problems with siblings
  • However most will become independently functioning adults
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

The way information is presented reflects the message being sent
median number of descriptive sentences about cf in carrier screening pamphlets
Median number of descriptive sentences about CF in carrier screening pamphlets

9

Positive

Negative

8

Neutral

7

6

5

4

3

2

1

0

0

0

0

All

US

UK

General

Adult

US

Comericial

Prenatal

US Non-

Commercial

Non

Commerical

Commercial

message conveyed by statements about life expectancy
Message conveyed by statements about life expectancy
  • Optimism/Hope
    • “It is impossible to know how long a person with CF will live. Advances in treatment have improved survival so that most people with CF born today will live into their 30's or longer.”
    • “As a result, although some children will die it a young age, it is likely that many children with CF disease who are born today may live into their 40's or longer.”
    • “In the past, people with CF died very young, but now many are living into their late 20's or 30's. The life span of children born with CF today is expected to be even longer”
message conveyed by statements about life expectancy30
Message conveyed by statements about life expectancy
  • Pessimism/Caution
    • “Even with improved care, only one-half of people with CF survive beyond 30 years of age.”
    • “Lung congestion, pneumonia, diarrhea, and poor growth are all part of CF, and even with modern medical treatment the average life span is 25 years.”
    • “While there has been much improvement in the care of children with CF: many of them still die in early childhood, and about half of all victims of CF die before they reach age 26.”
conclusion
Conclusion
  • Decision-making in both the pediatric and prenatal setting are challenging when providers and patients have different views
  • Providers should try to be aware of own biases
  • 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
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