Ethical Decision-making on Behalf of Children

Douglas S. Diekema MD, MPHDouglas S. Diekema MD, MPHProfessor of Pediatrics &Professor of Pediatrics &

Medical History and EthicsMedical History and EthicsUniversity of WashingtonUniversity of Washington

Ethical Principles

Beneficence

Respect for Autonomy Nonmaleficence

Justice

Beneficence

““To Do GoodTo Do Good””

Obligation to seek the good of othersObligation to seek the good of othersAvoid inflicting harmAvoid inflicting harmPrevent harmPrevent harmPromote goodPromote good

Beneficence

Medicine is a form of applied beneficenceMedicine is a form of applied beneficence

…….so is parenting.so is parenting

Beneficence and Decision-making:Values and Best Interests

Best Interests encompass spheres other than the medical: Best Interests encompass spheres other than the medical: Total WellTotal Well--being vs. Medical Wellbeing vs. Medical Well--beingbeing

TradeTrade--offs between competing goods: i.e. comfort vs. life offs between competing goods: i.e. comfort vs. life extension vs. cureextension vs. cure

Balancing benefit and harms of a given decisionBalancing benefit and harms of a given decision

We may not always appreciate the implications to others of We may not always appreciate the implications to others of decisions that may seem obvious to us (The Glass Castle).decisions that may seem obvious to us (The Glass Castle).

RM Veatch, J Med Phil 2000; 25: 701-722

A Faulty Characterization

AutonomyAutonomy

vs.vs.

BeneficenceBeneficence

Humility

……should always accompany should always accompany decisions we make that affect the decisions we make that affect the

welfare of others.welfare of others.

Legal Standards of Decision-making for others

Subjective StandardSubjective Standard

Substituted JudgmentSubstituted Judgment

Best InterestsBest Interests

Purpose of a Standard

Provide Guidance to DecisionProvide Guidance to Decision--makers?makers?

Identify the limits of surrogate decisionIdentify the limits of surrogate decision--makers?makers?

Parental Authority

Moral, social, and legal groundingMoral, social, and legal grounding

Consent vs. AssentConsent vs. Assent

PermissionPermission

Limited by Limited by ““best interestsbest interests”” of the childof the child

Limits of Parental Authority

Best Interests of the Child Best Interests of the Child Reasonable RangeReasonable RangeNot always separable from family interestsNot always separable from family interests

Parental IncompetenceParental Incompetence

Neglect or AbuseNeglect or Abuse

Best Interest Standard

Origins in Family Law (adoption, custody, Origins in Family Law (adoption, custody, foster care)foster care)Subsequently has become the prevailing Subsequently has become the prevailing standard used to judge the adequacy of standard used to judge the adequacy of medical decisionmedical decision--making on behalf of making on behalf of childrenchildren

Best Interest Standard

Brock/Buchanan: Brock/Buchanan: ““Acting so as to promote Acting so as to promote maximally the good of the individualmaximally the good of the individual””Beauchamp/Childress: Beauchamp/Childress: “…“…a surrogate a surrogate decision maker must determine the highest decision maker must determine the highest net benefit among the available options, net benefit among the available options, assigning different weights to interests the assigning different weights to interests the patient has in each option and discounting patient has in each option and discounting or subtracting inherent risks or costsor subtracting inherent risks or costs””

Best Interests

A reasonable guide to use in making A reasonable guide to use in making decisions on behalf of childrendecisions on behalf of children

Less reasonable when trying to judge the Less reasonable when trying to judge the adequacy of parental or guardian adequacy of parental or guardian judgments.judgments.

Problems

““Best InterestsBest Interests”” proves difficult to apply proves difficult to apply and often provides little meaningful and often provides little meaningful guidance in practiceguidance in practiceMultiple interests within a family make it Multiple interests within a family make it nearly impossible to apply to one childnearly impossible to apply to one childSociety doesnSociety doesn’’t seem to take it seriouslyt seem to take it seriouslyThe courts donThe courts don’’t really use itt really use it

Difficult to Apply

Often difficult to define the Often difficult to define the ““best interestbest interest””of a child in the medical settingof a child in the medical settingInherently a question of values rather than Inherently a question of values rather than an objectively measurable calculationan objectively measurable calculationNature of interests complexNature of interests complexNot clear the childNot clear the child’’s best interest should be s best interest should be the sole considerationthe sole consideration

We don’t expect it of parents

Parents frequently act in ways they know not to be Parents frequently act in ways they know not to be optimal or best for their children:optimal or best for their children:

EducationEducationSafetySafetyTelevisionTelevisionShoppingShoppingCompeting interestsCompeting interests

Society: A bit hypocritical?

EducationEducationHealth CareHealth CareMinimum WageMinimum WageChild CareChild CarePollution and HousingPollution and HousingDoes it make sense for society to demand Does it make sense for society to demand expensive interests in the expensive interests in the ““best interestbest interest”” of the of the child when it would require bankrupting a family?child when it would require bankrupting a family?

The Courts

Best Interests is frequently modified to become Best Interests is frequently modified to become something else in its applicationsomething else in its applicationCourts place a high burden on the state to prove Courts place a high burden on the state to prove the medical treatment is necessary before the medical treatment is necessary before compelling treatment over parental objectionscompelling treatment over parental objectionsCourts have been reluctant to require medical Courts have been reluctant to require medical treatment over the objection of parents treatment over the objection of parents ““except except where immediate action is necessary or where the where immediate action is necessary or where the potential for harm is rather serious.potential for harm is rather serious.”” (Wing)(Wing)

Academic Advocates: Kopelman

““The bestThe best--interests standardinterests standard……does not require does not require us to act in accord with what is literally best us to act in accord with what is literally best

for a child, ignoring all other for a child, ignoring all other considerationsconsiderations…….Rather, it requires us to .Rather, it requires us to focus on the child, and select wisely from focus on the child, and select wisely from

among alternatives, while taking into among alternatives, while taking into account how our lives are woven together.account how our lives are woven together.””

Deville & Kopelman

““Coercive state interference with parental Coercive state interference with parental prerogatives, for the good of the state and prerogatives, for the good of the state and

the good of the child, is justified when there the good of the child, is justified when there is is ‘‘clear and convincing evidenceclear and convincing evidence’’ that that

parentsparents’’ actions or decisions represent likely actions or decisions represent likely and serious harm to the child.and serious harm to the child.””

Sher on Neglect

Neglect, the basis for state action in many Neglect, the basis for state action in many medical cases, has been defined as a failure medical cases, has been defined as a failure to provide to provide “…“…the minimum quality of care the minimum quality of care

which the community will tolerate.which the community will tolerate.””

Why does it matter?Language is important. Moral Language is important. Moral

understanding is metaphorical. By referring understanding is metaphorical. By referring to best interests, health care providers are to best interests, health care providers are

led to believe the standard is a different one led to believe the standard is a different one that what we actually expect or use.that what we actually expect or use.

In other words:

We should be clear, say what we mean, We should be clear, say what we mean, and use a standard that makes sense.and use a standard that makes sense.

Levels of Engagement

Public PolicyPublic PolicyCitizen/Citizen/LegislatorLegislator

Should we make a rule?Should we make a rule?44°°

Criminal LawCriminal LawJudgeJudgeWill I tolerate her Will I tolerate her decision?decision?

33°°

Ethics Ethics ConsultationConsultation

Counselor/Counselor/EducatorEducator

What should she do?What should she do?22°°

Personal EthicsPersonal EthicsAgent/Agent/ActorActor

What should I do?What should I do?11°°

The Harm Principle

““The only purpose for which power can The only purpose for which power can rightfully be exercised over any member rightfully be exercised over any member

of a civilized community, against his will, of a civilized community, against his will, is to prevent harm to others. His own is to prevent harm to others. His own good, either physical or moral, is not a good, either physical or moral, is not a

sufficient warrant.sufficient warrant.””

----John Stuart Mill, John Stuart Mill, On LibertyOn Liberty

When is it justifiable to restrict individual freedom?

When action or decision places another individual at When action or decision places another individual at substantial risk of serious harmsubstantial risk of serious harm

Restriction of freedom must be effective in preventing that Restriction of freedom must be effective in preventing that harmharm

No less restrictive alternative exists that would be equally No less restrictive alternative exists that would be equally effective at preventing the harmeffective at preventing the harm

Feinberg. Harm to Others: The Moral Limits of the Criminal Law

Defining the Harm Threshold

RossRoss’’ Model of Constrained Parental Autonomy: Model of Constrained Parental Autonomy: Deprivation of Basic NeedsDeprivation of Basic NeedsFeinberg: interference with the interests necessary Feinberg: interference with the interests necessary for more ultimate goals like physical health and for more ultimate goals like physical health and vigor, integrity and normal functioning or onevigor, integrity and normal functioning or one’’s s body, absence of absorbing pain and suffering or body, absence of absorbing pain and suffering or grotesque disfigurement, minimal intellectual grotesque disfigurement, minimal intellectual acutiyacutiy, and emotional stability., and emotional stability.AAP: Substantial risk of serious harmAAP: Substantial risk of serious harm

Bottom Line when faced with Parental Refusal of Intervention

Current Question: Is this intervention in the Current Question: Is this intervention in the childchild’’s best interest?s best interest?

Proper Question: Does the decision made Proper Question: Does the decision made by the parents significantly increase the by the parents significantly increase the likelihood of serious harm as compared to likelihood of serious harm as compared to proposed options?proposed options?

Conditions that justify state interference with parents

Parents action places the child at significant risk of Parents action places the child at significant risk of harm that is serious and imminentharm that is serious and imminentInterference is necessary to prevent harm, likely to Interference is necessary to prevent harm, likely to prevent harm (proven efficacy), and is not prevent harm (proven efficacy), and is not associated with similar risk of similarly serious associated with similar risk of similarly serious harms (Proportionality)harms (Proportionality)No less intrusive alternativesNo less intrusive alternativesTest of GeneralizabilityTest of GeneralizabilityTest of Publicity (other would agree it is Test of Publicity (other would agree it is reasonable)reasonable)

Some Examples

Refusal of Cancer ChemotherapyRefusal of Cancer ChemotherapyRefusal of Blood TransfusionRefusal of Blood Transfusion

JehovahJehovah’’s Witness vs. Scientist Parentss Witness vs. Scientist ParentsRefusal of insulin in Type I DiabetesRefusal of insulin in Type I DiabetesRefusal of routine childhood immunizationsRefusal of routine childhood immunizations

NonNon--epidemicepidemicEpidemicEpidemic

Donation of an OrganDonation of an OrganBone MarrowBone MarrowKidneyKidney

Should we always err on the side of trying to preserve life?

Burdens and Benefits are what matterBurdens and Benefits are what matterIs continued existence sufficient benefit to Is continued existence sufficient benefit to justify to burdens of continued existencejustify to burdens of continued existenceAdult data suggests adults do not want Adult data suggests adults do not want aggressive care in all situations: 80% would aggressive care in all situations: 80% would want WH/WD of lifewant WH/WD of life--sustaining Rx in PVSsustaining Rx in PVS

What is Ethics?What is Ethics?

““Ethics at its best is only bad poetryEthics at its best is only bad poetry----that is, it seeks to help us see whatthat is, it seeks to help us see what

we see every day but fail to see rightly...we see every day but fail to see rightly...If ethicists had talent, they might be poets,If ethicists had talent, they might be poets,

but in the absence of talent, they try tobut in the absence of talent, they try tomake their clanking conceptual andmake their clanking conceptual and

discursive claims do the work of art.discursive claims do the work of art.””

----Stanley Stanley HauerwasHauerwas

The Three Layers of Morality

Character/IdentityCharacter/Identity

VisionVision

Action/ResponseAction/Response