Pediatric ethics: Decision-making conflicts between parents and providers

1
Pediatric ethics Decision-making conflicts
between parents and providers

• Benjamin S. Wilfond MD
• Director, Treuman Katz Center for Pediatric
  Bioethics
• Childrens Hospital and Regional Medical
  Center
• Professor and Head, Division of Bioethics
• Department of Pediatrics, University of
  Washington

2
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

3
Relationship between Parents and Providers
4
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

5
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

6
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

7
Who should decide?

• Parents
• Providers
• Government agencies
• Ethics committees

8
Tolerance of discordant views
Parents views
Treat
Dont Treat
Treat
Providers Views
Dont Treat
9
Agreement- Dont Treat
Parents views
Treat
Dont Treat
Treat
Providers Views
Dont Treat
10
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

11
Disagreement- Parents do not want treatment
Parents views
Treat
Dont Treat
Treat
Providers Views
Dont Treat
12
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(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

13
Considerations for overriding parental requests
to refuse medical treatment

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

14
Disagreement- Parents want treatment
Parents views
Treat
Dont Treat
Treat
Providers Views
Dont Treat
15
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)

16
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

17
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)

18
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

19
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
20
Spectrum of approaches to influencing health
related behavior
Actively Promote
Actively Discourage
Prohibit
Require
Dont Discuss
Financial Incentives
Financial Disincentives
Provide positive information
Provide negative information
21
(No Transcript)
22
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

23
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

24
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

25
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
• Dont offer artificial options

26
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

27
(No Transcript)
28
(No Transcript)