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
• 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 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
Relationship between Parents and Providers
Absolutism
Relativism
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
• 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
• 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
• Parents
• Providers
• Government agencies
• Ethics committees
Tolerance of discordant views
Parents views
Treat
Treat
Providers
Views
Dont
Treat
Dont Treat
Agreement- Don’t Treat
Parents views
Treat
Treat
Providers
Views
Don’t
treat
Don’t treat
Deciding not to employ
aggressive measures
• Withholding and withdrawing
• Killing vs letting die
• Palliative care
Disagreement- Treat/Don’t Treat
Parents views
Treat
Treat
Providers
Views
Do not
treat
Do not 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
– 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
• Harm
– Seriousness
– Likelihood
– Eminency
• Intervention
– Effectiveness
– Safety
• Alternatives
– Feasibility
Disagreement- Don’t Treat/Treat
Parents views
Treat
Treat
Providers
Views
Do not
treat
Do not treat
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
• Financial costs
• Availability of services
• Impact on families
• Family duties
• Limits of social obligations
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/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
• Some things must be done delicatelyWayne Morgan (citing the wicked witch of the west)
• Language can be a powerful manipulator
• Even “factual information” may not be neutral
Alternative 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
• 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
– 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 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 and result in frequent
school absences
Most children lead full lives, are
physically active, and can do well
in school
Causes emotional and financial
stress on the family
Most families learn self management
of problems
Mixed Messages
Loeben et al AJHG 1998
Neutral
Positive
Negative
This lifelong illness usually
gets more severe with age
and can affect both males
and females.
People are living longer than ever
before as researchers are
continuing to find new treatments.
If they live long enough, they
will probably need a heart and
lung transplant.
Lung infections are treated
with antibiotics but after
many years the infections
may resist treatment.
People with CF may use inhalers
that ease breathing, and have
chest physical therapy at least
once a day to help remove mucus
from their lungs.
The sputum is so thick that the
child cannot cough properly
and develops lunginfections
which cause progressive lung
damage.
Not all children are affected
in the same way.
Children with CF attend regular
schools, and can go to college,
work and get married.
Medical bills and resentment
from other children may cause
stress or other worry.
Median number of descriptive sentences about
CF in carrier screening pamphlets
9
Positive
Negative
Neutral
8
7
6
5
4
3
2
General
Adult
Prenatal
US NonCommercial
US
Comericial
0
Non
Commerical
Commercial
0
UK
0
US
0
All
1
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 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
• 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