Marianne Hultgren, DNP, RN

UCSF MEPN Program

Children with Special Needs and Ethical

Dilemmas in Pediatric Nursing

Dr. Dave's Case

Legal Issues Related to Caring for Children

Advance directives?? Consent

Special situations related to informed consentParental refusal of medical treatmentExceptions to parental consent requirementKnow the laws for the state where you practice

AssentFor the most part, laws are based on the

ethics of the society

A Brief History

Hippocrates clearly delineated two basic ethical principles:

A commitment to produce good for your patient.

A commitment to protect your patient from harm.

After Hippocrates

Paternalism as the norm:– Was/is a widely accepted Principal of

moral behaviorRequired for the passage of laws that set

limits for own goodRequired for your living in the dorms.

– Was appropriate for the social life of the timeIs all paternalism wrong? Where are the

limits?

AutonomyEach person has the right to make

his own fully informed choice.

– An extension of the political freedom to the personal sphere.

– Is sacred to most of us.

Beneficence

The duty to act in the patient’s best interest.

AND to perform the act that will benefit the other.

The duty to render aid.

Paternalism is subsumed under beneficence

Truthfulness (veracity) also belongs here

Nonmaleficence

The duty to actively avoid doing harm.

– Primum non nocere

– Is not simply: “First do no harm”.

JusticeProbably the hardest to grasp fully so often not

discussed– Many sub classifications, but all share

the same rule that: Equals must be treated equally and unequals must be treated unequally.

Civil Rights MovementJACHO Guidelines on sedation“I don’t know how to define it but I know it

when I see it” Justice Potter Stewart, 1964

The pregnant teenager seeking careThe 15-year old with pre-cancerous pap-

smear: do you contact parents when she won’t return phone calls?

The 11-year-old who says “no more chemotherapy—I want to stop”

The 5-year-old who the parents won’t immunize

The 9-year-old who weighs 250lbs (see Moodle!)

Medical-Legal-Ethical Issues in Pediatrics

Children with Special NeedsResult of congenital

abnormalitiesResult of accident /

traumaProgressive acquired

disease, or disease complications

Result from poor outcomes from medical care / intervention

Special Needs IssuesAirwayFrequent IllnessSensory DeficitsLearning NutritionMobilityGrowth and

Development

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Promoting Normal Development

Early childhoodBasic trust, separation from parents, beginning

independenceSchool age

Industry/activityAdolescence

Developing independence/autonomy

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Perspectives on the Care of Children with Special Needs

Scope of the problemTrends in care

Developmental focusFamily-centered

care“Normalization”Managed careHome CareRespite for Families

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Inc.

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Chronic Illness Trajectory Model

Goal of nursing care is to assist family in shaping the course of the illness while maintaining quality of life for the child and family

Effect of special needs on the child and familyEffects on the childEffects on the parents

Stressors of daily living Vulnerable child syndrome

Effects on siblings

The Medically Fragile Child

The Medically Fragile Child Nursing management of the medically fragile

child Providing ongoing follow-up of the former

premature infantProviding routine well-child care of the former

premature infantAssessing growth and development of the former

premature infantIdentifying and managing failure to thrive and

feeding disorders in children with special needs

Promoting growth and development

The Medically Fragile Child

Nursing management of the medically fragile child:

Promoting resources available to the child and family

Educational opportunities for the special

needs childEarly intervention Primary and secondary schoolFinancial and insurance resourcesRespite careComplementary therapies

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Identifying Family NeedsProvide support at time of diagnosisAccept family’s emotional reactions

Denial, guilt, angerSupport family’s coping methodsAdvocate for empowermentEducate about the disorder and general

health care

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Assisting Family Members in Managing Their

Feelings

Shock and denialAdjustmentReintegration and acknowledgmentEstablishing a support system

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Parents’ and Siblings’ Need for Education and Support

Through the Caregiving Process

Educational needsEmotional supportReligious and spiritual supportSibling supportCaregiver support

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Establishing a Support System

Intrafamilial resourcesSocial support systemsParent-to-parent supportParent-professional partnershipsCommunity resources

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Cost of Care

Long-term financial challenges for many families with special needs children

Lifetime insurance benefits may be used up early in childhood

Parent employment vs. caretaking needs of child

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Care Coordination

Ensure continuity of care for child and familyCoordinate among multidisciplinary providersEnsure that all needs are addressedPromote family’s role in decision makingEnhance family’s functioning

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Discharge Planning and Selection of a Home Care

AgencyDischarge planning begins at hospital

admissionMultidisciplinary approachInvolvement of family in discharge plansComprehensive written home care

instructions

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Effective Home CareEffective for some

casesMay not be possible

for allMay be initially

successful but require changes over time (e.g., deterioration of condition)

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Equipment Arrangement for Home

Care

Airway Issues

Nutritional Issues

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Promotion of Optimum Development, Self-Care, and

Education

Chronic illnesses pose significant challenge to normal development

Optimize opportunities for developmentally appropriate experiences within the constraints posed by the child’s condition and equipment requirements

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Safety Issues in the Home

Priority phone and electrical service providedEmergency protocols (including CPR), backup

electricity, etc.Care provided by appropriately trained

peopleMedications, sharps, hazardous materialsNight safety concerns

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Family-to-Family Support

Evaluate family support systemsNetworking with other families of special

needs childrenRespite care for families

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Perspectives on Care of Children at the End of

LifePrinciples of palliative care

Focus on symptom control and supportDecision making at the end of life

Parents, child, health care teamTreatment options for the terminally ill

childSee ELNEC materials for Pediatrics

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Fears at End of Life

Fear of painFear of dying alone or parent’s fear of not

being present at time of deathFear of actual death

Home vs. hospital

The Dying Child Nursing management of the dying child

Managing pain and discomfortEasing anxiety or fears Providing nutrition Supporting the dying child and familyMeeting the dying child’s needs according to

developmental stageCaring for the nurse who is caring for the child

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Inc.

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Special Decisions at the Time of Dying and Death

DNR/right to dieViewing the bodyOrgan/tissue

donationSibling attendance at funeral services

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Grief and Mourning

Symptoms of normal griefSomatic distressPreoccupation with image of the deceasedGuiltHostilityLoss of usual patterns of conduct

4 Box Method (Jonsen, Siegler, Winslade, 2006) Are 4 topics which can be found in any

ethics case and should be considered.

1. Medical Indications2. Patient Preferences3. Quality of Life4. Contextual Features

Four Box Method of Considering Ethical

Dilemmas

Medical Indications

(Beneficence andNonmaleficence)

Patient Preferences

(Autonomy)

Contextual Features

(Loyalty and Fairness)

Quality of Life(Beneficence,

Nonmaleficence, and Respect for

Autonomy)

Medical IndicationsDiagnosis, Prognosis and treatmentGoals of care: Benefit to the patientRisksProbable Outcomes

Patient Preferences

What does the patient WANT?

Do they have sufficient information and faculties to decide?

Have they been informed? Coerced?

“Truthful communication”

Quality of Life

Contextual Features

Persons, institutions, social and FINANCIAL arrangements

Influenced by psychological, emotional, legal, educational, religious, scientific or FINANCIAL considerations

JESSICA'S STORY