1. HOW DO WE RESPOND?
Ethical Issues Related to Neonates, Infants, Children, and Their Parents

2. Objectives
Describe how treatment and termination of life issues affecting premature infants born with anomalies and seriously ill children may be addressed to support parents and families.
Apply ethical principles to pediatric case scenarios

3. Epidemiology
Approximately 500,000 children cope with life-threatening conditions annually in the United States1
Over 50,000 infants and children die annually in the United States2
1. Himelstein BP et al. N Eng J Med 2004; 350:1752
2. Hoyert DL et al. Pediatrics 2006; 117:168

4. Leading Causes of Neonatal &Infant Death
Congenital & Chromosomal Anomalies
Disorders related to SGA & LBW
SIDS
Maternal Complications of Pregnancy
Complications of Placenta, Cord & Membranes
Respiratory Distress
Accidents
Bacterial Sepsis
Diseases of the Circulatory System
Intrauterine Hypoxia & Birth Asphyxia
Martin JA et al. Pediatrics 2005; 115:619

5. Leading Causes of Childhood Death (1- 19 years old)
Accidents (unintentional injuries)
Assault (homicide)
Malignant Neoplasms
Intentional Self Harm (suicide)
Congenital & Chromosomal Anomalies
Diseases of Heart
Chronic Lower Respiratory Diseases
Influenza and Pneumonia
Septicemia
Cerebrovascular Diseases
Martin JA et al. Pediatrics 2005; 115:619

6. Epidemiology Site of Death
Feudtner C et al Pediatrics 2006; 117:e932

7. Angus DC et al. Crit Care Med 2004; 32:638

8. Mode of Death
The most common mode of death in both NICU and PICU is the limitation or withdraw of life sustaining therapy
Vernon DD et al. Crit Care Med 1993; 21:1798
Mink RB et al. Pediatrics 1992; 89:961
Barton et al. Pediatrics 2005;116: 1487

9. Ethical Principles to Consider
Autonomy
Nonmaleficence
Beneficence
Justice

10. Communication
Withholding treatment
Withdrawing treatment
End of life

11. Communication
Bad news
Parents perspective
Caregivers perspective

12. Improving the Quality of End-of-Life Care
Parents’ priorities and recommendations
include:
Honest and complete information
Ready access to staff
Communication and coordination of care
Emotional expression and support by staff
Preservation of the integrity of the parent-child relationship
Faith
Meyer EC et al. Pediatrics 2006; 117:649

13. Communication What are the patient and family goals?
Who is involved in decision-making?
What will our decision look like?

14. The Ideal Decision Making Process
Is shared between the caregiver team, patient, & family
Reaches a consensus on a medical plan that is in accordance with the values and choices of the patient and family
Begins early during the ICU admission with a multidisciplinary meeting which:
Uses nontechnical language
Allows ample time for questions
Considers the patient’s & family’s personal values and goals of therapy
Is one of negotiation
Is documented
Thompson BT et al Crit Care Med 2004; 32:1781

15. Palliative Care Curative Focus: Disease-Specific Treatments
Palliative Focus:
Comfort / Supportive Treatments
Bereavement
Support

16. Case Study One What are the ethical issues raised in this case?
What are the concerns of the family members?
What are the concerns of the professional caregivers?

17. Case Study Two
Can components of comfort care and intensive care occur simultaneously?
What is the basis for staff’s concern?
How can staff best support this family?