(Data for 1980-1999 ages 1-14 from National Center for Health Statistics (2002). Health United States, 2002 with Chartbook on Trends in the Health of Americans. Table 36; Data for 1990-1999 ages 15-19 from Federal Interagency Forum on Child and Family Statistics. America’s Children Key National Indicators of Well-Being, 2002. Washington, DC; Data for ages 15-19 for 1999 from Hogert DL, Arias E, Smith BL, Murphy SL, Kochanek KD. “Deaths: Final Data for 1999.” National Vital Statistics Reports 49(8), Hyattsville, Md: National Center for Health Statistics, 2002; Data for ages 15-19 for 2000 from Minino AM, Arias E, Kochanek KD, Murphy SL, Smith BL. “Deaths: Final Data from 2000.” National Vital Statistics Reports 50(15), Hyattsville, Md: National Center for Health Statistics, 2002; Data for 2000 from Arias E, Smith BL. “Deaths: Preliminary Data for 2001.” National Vital Statistics Reports 51(5), Hyattsville, Md: National Center for Health Statistics, 2003, Table 1; Data for 2001 from Arias E, Anderson R, Kung H, Murphy SL, and Kochanek KD. (2003). “Deaths: Final Data from 2001.” National Vital Statistics Reports 52(3), Hyattsville, Md: National Center for Health Statistics, Tables 3 and 4. Estimates for ages 5-14 total and gender are based on Childs Trends calculations using July 1, 2001, population estimates based on the 2000 census. Race population estimates for ages 5-14 are based on population estimates from National Center for Health Statistics; Data for 2002 from Kochanek KD, Murphy SL, Anderson RN, Scott C. “Deaths: Final Data for 2002.” National Vital Statistics Reports 53(5), Hyattsville, Md: National Center for Health Statistics, Table 4. Estimates for ages 5-14 are based on Childs Trends calculations using July 1, 2002, population estimates based on the 2000 census, as presented in Table 1 in the same report. Data for 2003 from Hogert DL, Heron MP, Murphy SL, Kung H. (2006). “Deaths: Final Data for 2003.” National Vital Statistics Reports 54(13), Hyattsville, Md: National Center for Health Statistics.)

Fig. 7-2 A, Deaths of children, ages 1-4, by state. B, Under age 5 deaths, (by country, per 100,000).

(Data adapted from Field MJ and Behrman RE, eds. “Patterns of Childhood Deaths in America,” Institute of Medicine of the National Academy of Sciences, the National Academy of Press:2003, pp 41-71.)

A 2003 Institute of Medicine report ³ estimates that there are approximately 55,000 deaths of children younger than 18 years per year, compared to more than 2 million adult deaths per year in the United States. Approximately, 51 percent of those children die in the first year of life (34 percent in the neonatal period and 17 percent from one month to 12 months of age), 10 percent from 1 year to 4 years of age, 14 percent from 5 years of age to 14 years, and 25 percent from 15 to 19 years of age. In addition there is a large group of young adults (ages 20 to 24), who succumb to chronic debilitating pediatric diseases.

The causes of death vary and are age-dependent: birth defects, low birth weight, maternal complications, respiratory distress, and sepsis account for the majority of deaths in the first year of life. Unintentional injuries, homicide, suicide, cancer, heart disease, and sudden infant death syndrome account for more than 51 percent of pediatric deaths. There still remains a large category of other causes, accounting for 18 percent of pediatric deaths.³

Conditions appropriate for pediatric palliative care fall into one of the following groups:

1. Children with diseases, such as cancer or complex congenital heart disease, in which attempts at cure may fail.

2. Children who have life-threatening diseases, such as cystic fibrosis and HIV, for whom treatment may significantly extend life.

3. Children with progressive diseases, such as spinal muscular atrophies, metabolic and genetic disorders, for whom palliative care may be the only treatment.

4. Children who have severe non-progressive neurologic disabilities, such as cerebral palsy, that may result in premature death from recurrent respiratory difficulties or sepsis.

5. Previously healthy children who have a sudden and totally unanticipated death, such as trauma, severe infections, or an adverse event in the hospital.⁴^–⁶

The Hospital

As children live for longer periods, the need for complex services also escalates.^3,⁶^–⁹ In addition to multiple visits to sub-specialty clinics, many of these children have prolonged and repeated hospital admissions. Whatever the nature and duration of the admission, hospitalization exerts extraordinary psychological demands. The child’s physical distress, and the parents’ witnessing of that distress, is compounded by the implications of the illness that necessitate hospitalization, and by the separation from normal life and from other family members, especially siblings or other children.¹⁰ Counterbalancing these stressors, particularly for children with illnesses who have required frequent and prolonged admissions, is the sense that the hospital clinicians become a second family who understand and share in the family’s experiences. Hospitals are a place where many children with life-threatening illnesses and families live, often for prolonged periods.

The Intensive Care Unit

The majority of children (more than 56 percent) die in hospitals and more than 85 percent of these deaths occur in the ICU.^3,⁷ These ICU settings include neonatal (NICU), pediatric (PICU) and more recently created cardiovascular (CVICU) units. Exceptions include tertiary children’s hospitals with end-of-life programs that work collaboratively with community resources.¹¹ A retrospective analysis of deaths in a Canadian tertiary care children’s hospital over a 21/2 year period studied children who were hospitalized for at least 24 hours prior to their deaths and those who were hospitalized for at least 7 days prior to their deaths.¹² Acutely ill children who were previously healthy were excluded. Demographic data included age, gender, primary diagnosis, location of death, pain and symptom management, communication at end of life including CODE status, family preference for location of death, and the child’s involvement. Of the 236 deaths, only 86 met study criteria. Neonates accounted for 56 percent of the deaths; in 8, death was unexpected. The ICU saw 83 percent of the deaths and 78 percent of those children were intubated at the time of death. More than half, 57 percent, were medically paralyzed and 3 were on extra-corporeal membrane oxygenation (ECMO). Opioids were administered, mostly by continuous infusion, in 84 percent of the children for pain, dyspnea, discomfort related to mechanical ventilation, or post-operative pain. Acetaminophen, non-steroidal anti-inflammatory drugs and complementary medications were also used, as well as non-pharmacologic therapy, including relaxation and imagery.

A retrospective analysis reviewed the hospital care required for 9000 children and young adults with complex chronic conditions (CCCs) during their last year.⁸ Children with these conditions accounted for one-fourth of all pediatric deaths. More than 84 percent were hospitalized at death and 50 percent received mechanical ventilation during their terminal admission. Neonates who were less than 7 days of age spent 92 percent of their lives in the hospital; those aged 7 to 28 days spent 85 percent; and infants between one month and 1 year of age spent 41 percent of their lives in the hospital. In the non-neonates, 55 percent were hospitalized at death, with 19 percent mechanically ventilated. The rate of hospital use increased overall as death approached.

This study ⁸ also found variability as to whether children’s code and resuscitation status had been addressed. Discussion about code status was documented only for 79 percent of patients. Results demonstrated that multiple discussions with families were required regarding resuscitation and an actual Do Not Resuscitate (DNR) order. Once a DNR decision was obtained, the majority of children died within one day, although some children lived as long as 30 days. In charts without documentation of DNR status, cardiopulmonary resuscitation was initiated but was unsuccessful.

The mode of death in a number of PICUs has been well described.¹³^–¹⁸ A decision to forgo life-sustaining treatments was made in only 20 to 55 percent of critically ill children who eventually died. Diverse cultural, religious, philosophical, legal, and professional attitudes often affect these decisions. Despite the children’s grave prognoses, CPR was initiated and had a failure rate that varied from 16 percent to as high as 73 percent. Full life support at the time of death varied from 18 to 55 percent of the patients. A DNR order was found in less than 25 percent of the patient’s charts. Withdrawal or limitation of life-sustaining therapy, including extubation, occurred in 43 percent of the patients. More than 90 percent of these children died within 24 hours; the rest died on the second day.

The Intensivist’s Role

The intensivist must engage the family in ongoing discussions about end-of-life issues and repeatedly address and evaluate the goals of care.⁵ This role continues long after decisions to forgo life-sustaining treatments have occurred, as families look to the attending intensivist throughout the dying process. The ICU team assures the family that the child’s care is undertaken with a focus on quality of life, dignity, and comfort.^19,²⁰ The ICU nurses play a central role; at the bedside, families often call upon them for explanations of the child’s care and the existing options as well for emotional sharing.²¹ This is also where the social workers, psychologists, child life specialists, and chaplains of the interdisciplinary team can play pivotal roles. Studies have shown that when the ICU staff spends time conversing and providing bereavement resources, the families experience less stress, anxiety, and depression after the child’s death.²²