Ethical issues about children with special needs: Decisionmaking by parents and providers

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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
• National Institutes of Health
• Bethesda, MD 20892

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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

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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

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Relationship between Parents and Providers
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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

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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

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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

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Who should decide

• Parents
• Providers
• Government agencies
• Ethics committees

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Tolerance of discordant views
Parents views
Treat
Dont Treat
Treat
Providers Views
Dont Treat
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Agreement- Dont Treat
Parents views
Treat
Dont treat
Treat
Providers Views
Dont treat
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Deciding not to employ aggressive measures

• Withholding and withdrawing
• Killing vs letting die
• Palliative care

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Disagreement- Treat/Dont Treat
Parents views
Treat
Do not treat
Treat
Providers Views
Do not treat
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Can parents refuse life saving treatments

• Presumption that parents should make medical
  decisions for children
• Parents promotion of childs 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

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Considerations for overriding parental requests
to refuse medical treatment

• Harm
• Seriousness
• Likelihood
• Eminency
• Intervention
• Effectiveness
• Safety
• Alternatives
• Feasibility

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Disagreement- Dont Treat/Treat
Parents views
Treat
Do not treat
Treat
Providers Views
Do not treat
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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

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Familial and social obligations to seriously ill
and disabled newborns

• Financial costs
• Availability of services
• Impact on families
• Family duties
• Limits of social obligations

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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

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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
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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

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Alternative approaches to influencing health
related behavior
Actively Promote
Actively Discourage
Prohibit
Require
Dont Discuss
Financial Incentives
Financial Disincentives
Provide positive information
Provide negative information
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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

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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

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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

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Mixed MessagesLoeben et al AJHG 1998
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Median number of descriptive sentences about CF
in carrier screening pamphlets
9
Positive
Negative
8
Neutral

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6
5
4
3
2
1
0
0
0
0
All
US
UK
General Adult
US Comericial
Prenatal
US Non- Commercial
Non Commerical
Commercial
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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

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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.

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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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