Marianne Hultgren, DNP, RN

UCSF MEPN Program

 Advance directives??
 Consent
 Special situations related to informed consent
 Parental refusal of medical treatment
 Exceptions to parental consent requirement
 Know the laws for the state where you practice

 Assent
 For the most part, laws are based on the ethics of the
society
 Hippocrates clearly delineated two basic ethical
principles:
 A commitment to produce good for your patient.
 A commitment to protect your patient from harm.
 Paternalism as the norm:
– Was/is a widely accepted Principal of moral
behavior
Required for the passage of laws that set limits for
own good
Required for your living in the dorms.
– Was appropriate for the social life of the time
Is all paternalism wrong? Where are the limits?
Each 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.

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

The duty to actively avoid doing harm.

– Primum non nocere

– Is not simply: “First do no harm”.

Probably 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 Movement
 JACHO 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 care
 The 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!)
 Result of congenital
abnormalities
 Result of accident /
trauma
 Progressive acquired
disease, or disease
complications
 Result from poor
outcomes from medical
care / intervention
 Airway
 Frequent Illness
 Sensory Deficits
 Learning
 Nutrition
 Mobility
 Growth and
Development
 Early childhood
 Basic trust, separation from parents, beginning
independence
 School age
 Industry/activity
 Adolescence
 Developing independence/autonomy

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 Scope of the problem
 Trends in care
 Developmental focus
 Family-centered care
 “Normalization”
 Managed care
 Home Care
 Respite for Families

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 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

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 Effect of special needs on the child and family
 Effects on the child
 Effects on the parents
 Stressors of daily living
 Vulnerable child syndrome

 Effects on siblings
 Nursing management of the medically fragile child
 Providing ongoing follow-up of the former premature
infant
 Providing routine well-child care of the former premature
infant
 Assessing growth and development of the former premature
infant
 Identifying and managing failure to thrive and feeding
disorders in children with special needs
 Promoting growth and development
Nursing management of the medically fragile
child:
Promoting resources available to the child
and family

 Educational opportunities for the special

needs child
 Early intervention
 Primary and secondary school
 Financial and insurance resources
 Respite care
 Complementary therapies
 Provide support at time of diagnosis
 Accept family’s emotional reactions
 Denial, guilt, anger
 Support family’s coping methods
 Advocate for empowerment
 Educate about the disorder and general health care

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 Shock and denial
 Adjustment
 Reintegration and acknowledgment
 Establishing a support system

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 Educational needs
 Emotional support
 Religious and spiritual support
 Sibling support
 Caregiver support

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 Intrafamilial resources
 Social support systems
 Parent-to-parent support
 Parent-professional partnerships
 Community resources

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 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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 Ensure continuity of care for child and family
 Coordinate among multidisciplinary providers
 Ensure that all needs are addressed
 Promote family’s role in decision making
 Enhance family’s functioning

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 Discharge planning begins at hospital admission
 Multidisciplinary approach
 Involvement of family in discharge plans
 Comprehensive written home care instructions

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 Effective for some cases
 May not be possible for
all
 May be initially
successful but require
changes over time (e.g.,
deterioration of
condition)

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 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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 Priority phone and electrical service provided
 Emergency protocols (including CPR), backup
electricity, etc.
 Care provided by appropriately trained people
 Medications, sharps, hazardous materials
 Night safety concerns

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 Evaluate family support systems
 Networking with other families of special needs
children
 Respite care for families

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 Principles of palliative care
 Focus on symptom control and support
 Decision making at the end of life
 Parents, child, health care team
 Treatment options for the terminally ill child
 See ELNEC materials for Pediatrics

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 Fear of pain
 Fear of dying alone or parent’s fear of not being
present at time of death
 Fear of actual death
 Home vs. hospital

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 Nursing management of the dying child
 Managing pain and discomfort
 Easing anxiety or fears
 Providing nutrition
 Supporting the dying child and family
 Meeting the dying child’s needs according to
developmental stage
 Caring for the nurse who is caring for the child
 DNR/right to die
 Viewing the body
 Organ/tissue donation
 Sibling attendance at
funeral services

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 Symptoms of normal grief
 Somatic distress
 Preoccupation with image of the deceased
 Guilt
 Hostility
 Loss of usual patterns of conduct

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 Are 4 topics which can be found in any ethics case
and should be considered.

1. Medical Indications
2. Patient Preferences
3. Quality of Life
4. Contextual Features
 Medical Indications Patient Preferences
(Beneficence and (Autonomy)
Nonmaleficence)

Contextual Features Quality of Life

(Loyalty and Fairness) (Beneficence,
Nonmaleficence,
and Respect for
Autonomy)
 Diagnosis, Prognosis and
treatment
 Goals of care: Benefit to
the patient
 Risks
 Probable Outcomes
 What does the patient
WANT?
 Do they have sufficient
information and
faculties to decide?
 Have they been
informed? Coerced?
 “Truthful
communication”
 Persons, institutions,
social and FINANCIAL
arrangements
 Influenced by
psychological,
emotional, legal,
educational, religious,
scientific or
FINANCIAL
considerations