children with special needs and ethical dilemmas
TRANSCRIPT
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 13
Promoting Normal Development
Early childhoodBasic trust, separation from parents, beginning
independenceSchool age
Industry/activityAdolescence
Developing independence/autonomy
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier
Inc.
Slide 14
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier
Inc.
Slide 15
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 19
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 20
Assisting Family Members in Managing Their
Feelings
Shock and denialAdjustmentReintegration and acknowledgmentEstablishing a support system
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 21
Parents’ and Siblings’ Need for Education and Support
Through the Caregiving Process
Educational needsEmotional supportReligious and spiritual supportSibling supportCaregiver support
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 22
Establishing a Support System
Intrafamilial resourcesSocial support systemsParent-to-parent supportParent-professional partnershipsCommunity resources
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 23
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 24
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 25
Discharge Planning and Selection of a Home Care
AgencyDischarge planning begins at hospital
admissionMultidisciplinary approachInvolvement of family in discharge plansComprehensive written home care
instructions
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier
Inc.
Slide 26
Effective Home CareEffective for some
casesMay not be possible
for allMay be initially
successful but require changes over time (e.g., deterioration of condition)
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 27
Equipment Arrangement for Home
Care
Airway Issues
Nutritional Issues
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 30
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 31
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 32
Family-to-Family Support
Evaluate family support systemsNetworking with other families of special
needs childrenRespite care for families
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 33
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 34
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
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier
Inc.
Slide 36
Special Decisions at the Time of Dying and Death
DNR/right to dieViewing the bodyOrgan/tissue
donationSibling attendance at funeral services
Mosby items and derived items © 2007, 2003 by Mosby, Inc., an affiliate of Elsevier Inc.Slide 37
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