Seriously Ill Children

What greater pain could mortals have than this: To see their children dead before their eyes?

—Euripides

To a parent, the death of a child is an affront to the proper order of things. Children are supposed to outlive their parents, not the other way around. When a child comes into the world irreparably ill, what is a parent to do: insist on continuous medical intervention, hoping against hope that the child survives, or let nature take its course and allow the newborn to die? When a five-year-old child has painful, life-threatening disabilities, the parent is faced with a similar agonizing decision. That decision is the parent's to make, preferably with the advice of a sensitive physician. However, what if the ailing child is an adolescent who refuses further treatment for a terminal illness? Does a parent honor that wish? This chapter focuses on infant and child death, the conditions that often cause mortality at young ages, and medical decision making for seriously ill children.

INFANT MORTALITY AND LIFE EXPECTANCY AT BIRTH

Kenneth D. Kochanek and Joyce A. Martin of the Centers for Disease Control and Prevention (CDC) indicate in “Supplemental Analysis of Recent Trends in Infant Mortality” (January 11, 2007, http://www.cdc.gov/nchs/products/pubs/pubd/hestats/infantmort/infantmort.htm) that from 1933 through 2001 the U.S. infant mortality rate declined dramatically. In 1933 the infant mortality rate was 58.1 deaths per 1,000 live births. With each decade, infant mortality declined significantly, to 47 deaths per 1,000 live births in 1940, to 29.2 deaths per 1,000 live births in 1950, to eventually 6.8 deaths per 1,000 live births in 2001. This rate remained relatively steady through 2005. (See Table 5.1 and Table 5.2.)

Table 5.1 shows the decline in infant mortality rates from 1983 to 2004, and Table 5.2 shows figures for 2004 and preliminary figures for 2005. The data in these two tables differ slightly in some cases due to the use of somewhat different data sets.

Advances in neonatology (the medical subspecialty concerned with the care of newborns, especially those at risk), which date back to the 1960s, have contributed to the huge drop in infant death rates. Infants born prematurely or with low birth weights, who were once likely to die, now can survive life-threatening conditions because of the development of neonatal intensive care units. However, the improvements are not consistent for newborns of all races.

African-American infants are more than twice as likely as white and Hispanic infants to die before their first birthday. In 2004 the national death rate for African-American infants was 13.8 per 1,000 live births, compared to 5.7 for non-Hispanic white infants and 5.6 for Hispanic infants. (See Table 5.2.) In 2005 the national death rate for African-American infants was slightly lower than in 2004: 13.7 per 1,000 live births, compared to 5.7 for non-Hispanic white infants and 5.9 for Hispanic infants.

Native American or Alaskan Native infants are about one and half times as likely as white and Hispanic infants to die before their first birthday. In 2004 the national death rate for Native American or Alaskan Native infants was 8.4 per 1,000 live births, compared to 5.7 for white infants and 5.5 for Hispanic infants. (See Table 5.1.)

When are infants dying? Table 5.1 shows death rates during the neonatal period (under twenty-eight days after birth) and the postneonatal period (from twenty-eight days after birth to eleven months of age). The neonatal and postneonatal deaths together comprise the infant death rate. Of all infant deaths in 2004, two-thirds occurred during the neonatal period. For example, 4.5

infants died per 1,000 live births of all mothers in 2004 during the neonatal period, compared to a total of 6.8 infant deaths per 1,000 live births of all mothers. This proportion of deaths occurring during the neonatal period was relatively consistent across race and Hispanic origin of the mother in 2004.

infants died per 1,000 live births of all mothers in 2004 during the neonatal period, compared to a total of 6.8 infant deaths per 1,000 live births of all mothers. This proportion of deaths occurring during the neonatal period was relatively consistent across race and Hispanic origin of the mother in 2004.

Life expectancy is the age to which people born in a particular year in a particular location can anticipate living. Infants born in the United States in 2005 are expected to live an average of 77.9 years, up from 77.8 years in 2004. (See Table 5.3.) However, those in certain groups have slightly different life expectancies. Females have a longer life expectancy than males. Female infants born in 2005 are expected to live for 80.4 years, whereas

males born in that same year are expected to live for 75.2 years. White infants born in 2005 are expected to live 78.3 years, whereas

African-American infants are expected to live 73.2 years. The male-female life expectancy differences exist among these groups as well.

CAUSES OF INFANT MORTALITY

Birth defects are the leading cause of infant mortality in the United States. Birth defects are abnormalities of structure, function, or metabolism present at birth. In 2005 these congenital problems accounted for 5,562 (19.5%) out of 28,534 total causes of infant deaths. (See Table 5.4.) Birth defects are listed in Table 5.4 as congenital malformations, deformations, and chromosomal abnormalities.

Some of the more serious birth defects are anencephaly (absence of the majority of the brain) and spina bifida (incomplete development of the back and spine). Down syndrome, a condition in which babies are born with an extra copy of chromosome 21 in their cells, results in anatomical and developmental problems along with cognitive deficits. Down syndrome children may be born with birth defects that are fatal, including defects of the heart, lungs, and gastrointestinal tract. However, many Down syndrome children live well into adulthood.

According to the CDC, in “Birth Defects” (2008, http://www.cdc.gov/ncbddd/bd/default.htm), one out of every thirty-three babies born in the United States each year have birth defects. The CDC notes that babies born with birth defects are more likely to have poor health and long-term disabilities than babies born without birth defects.

Disorders related to short gestation (premature birth) and low birth weight accounted for the second-leading cause of infant mortality in 2005—out of a total of 28,534 infant deaths, 4,709 babies died from these disorders. (See Table 5.4.) Among African-American infants, these disorders were the leading cause of infant death (1,881 out of 8,655 infant deaths from all causes). Other causes of infant deaths were sudden infant death syndrome, maternal complications of pregnancy, and complications of the placenta, cord, and membranes. These five leading causes of infant mortality accounted for more than half (53.5%) of the total infant deaths in all races in 2005.

BIRTH DEFECTS

The March of Dimes Birth Defects Foundation, a national volunteer organization that seeks to improve infant health by preventing birth defects and lowering infant mortality rates, reports in “Birth Defects” (April 2006, http://www.marchofdimes.com/pnhec/4439_1206.asp) that about 120,000 babies are born annually in the United States with birth defects. Some birth defects have genetic causes—inherited abnormalities such as Tay-Sachs

disease (a fatal disease that generally affects children of east European Jewish ancestry) or chromosomal irregularities such as Down syndrome. Other birth defects result from environmental factors—infections during pregnancy, such as rubella (German measles), or drugs used by the pregnant woman. The specific causes of many birth defects are unknown, but scientists think that many result from a combination of genetic and environmental factors. Even though many birth defects are impossible to prevent, some can be avoided, such as those caused by maternal alcohol and drug consumption during pregnancy.

Two types of birth defects that have been the subject of considerable ethical debate are neural tube defects and permanent disabilities coupled with operable but life-threatening factors. An example of the latter is Down syndrome.

Neural Tube Defects

Neural tube defects (NTDs) are abnormalities of the brain and spinal cord resulting from the failure of the neural tube to develop properly during early pregnancy. The neural tube is the embryonic nerve tissue that develops into

the brain and the spinal cord. The CDC states in “Spina Bifida and Anencephaly before and after Folic Acid Mandate—United States, 1995–1996 and 1999–2000” (Morbidity and Mortality Weekly Report, vol. 53, no. 17, May 7, 2004) that between 1995 and 1996 four thousand pregnancies were affected with NTDs. This number dropped to three thousand between 1999 and 2000. The CDC suggests that this decline was due to an increase in folic acid consumption by pregnant women during these years.

The CDC notes that folic acid can prevent 50% to 70% of NTDs if women contemplating pregnancy consume sufficient folic acid before conception and then throughout the first trimester of pregnancy. Thus, in 1992 the U.S. Public Health Service recommended that all women capable of becoming pregnant consume four hundred micrograms of folic acid daily. In addition, the U.S. Food and Drug Administration mandated that as of January 1998 all enriched cereal grain products be fortified with folic acid.

The two most common NTDs are anencephaly and spina bifida.

ANENCEPHALY. Anencephalic infants die before birth (in utero or stillborn) or shortly thereafter. The incidence of anencephaly decreased significantly from 18.4 cases per 100,000 live births in 1991 to 9.4 cases per 100,000 live births in 2001. (See Figure 5.1 and Table 5.5.) The largest drop during this period was from 1991 to 1992. Between 1993 and 2001 the general trend was downward. In 2002 the rates began to rise a bit, from 9.6 cases per 100,000 live births in 2002 to 11.1 cases per 100,000 live births in 2005. Nonetheless, the CDC explains in “Trends in Spina Bifida and Anencephalus in the United States” that this slight increase is statistically insignificant, meaning that the differences are unimportant and could have occurred by chance alone.

Issues of brain death and organ donation sometimes surround anencephalic infants. One case that gained national attention was that of Theresa Ann Campo in 1992. Before their daughter's birth, Theresa's parents discovered through prenatal testing that their baby would be born without a fully developed brain. They decided to carry the fetus to term and donate her organs for transplantation. When baby Theresa was born, her parents asked for her to be declared brain dead. However, Theresa's brain stem was still functioning, so the court ruled against the parents' request. Baby Theresa died ten days later and her organs were not usable for transplant because they had deteriorated as a result of oxygen deprivation.

Some physicians and ethicists agree that even if anencephalic babies have a brain stem, they should be considered brain dead. Lacking a functioning higher brain, these babies can feel nothing and have no consciousness. Others fear that declaring anencephalic babies dead could be the start of a “slippery slope” that might eventually include babies with other birth defects in the same category. Other people are concerned that anencephalic babies may be kept alive for the purpose of harvesting their organs for transplant at a later date.

SPINA BIFIDA. Spina bifida, which literally means “divided spine,” is caused by the failure of the vertebrae (backbone) to completely cover the spinal cord early in fetal development, leaving the spinal cord exposed. Depending on the amount of nerve tissue exposed, spina bifida defects range from minor developmental disabilities to paralysis.

Before the advent of antibiotics in the 1950s, most babies with severe spina bifida died soon after birth. With antibiotics and many medical advances, some of these newborns can be saved.

The treatment of newborns with spina bifida can pose serious ethical problems. Should an infant with a milder form of the disease be treated actively and another with severe defects be left untreated? In severe cases, should the newborn be sedated and not be given nutrition and hydration until death occurs? Or should this seriously disabled infant be cared for while suffering from bladder and bowel malfunctions, infections, and paralysis? What if infants who have been left to die unexpectedly survive? Would they be more disabled than if they had been treated right away?

The development of fetal surgery to correct spina bifida before birth added another dimension to the debate. There are risks for both the mother and the fetus during and after fetal surgery, but techniques have improved since the first successful surgery of this type in 1997. In 2003 the National Institute of Child Health and Human Development began funding the Management of Myelomeningocele Study (http://www.spinabifidamoms.com/english/index.html) to compare the progress between babies who have prenatal (prebirth) surgery and those who have postnatal (after birth) surgery. The study was ongoing as of May 2008.

Figure 5.2 and Table 5.6 show that spina bifida rates increased from 22.8 cases per 100,000 live births in 1992

to 28 cases per 100,000 live births in 1995, but after 1995 the rates declined significantly to 20.7 cases per 100,000 live births in 1999. Even though the CDC explains in “Trends in Spina Bifida and Anencephalus in the United States” that the decline from 1999 to 2005 was statistically insignificant, the rate for 2005 (eighteen cases per one hundred thousand live births) was the lowest ever reported. As mentioned earlier, the decline in spina bifida rates is an indicator of successful efforts to prevent this defect by increasing folic acid consumption among women of childbearing age.

Down Syndrome

Down syndrome is a condition caused by chromosomal irregularities that occur during cell division of either the egg or the sperm before conception. Instead of the normal forty-six chromosomes, Down syndrome newborns have an extra copy of chromosome 21, giving them a total of forty-seven chromosomes. Along with having certain anatomical differences from non-Down syndrome children, Down children have varying degrees of mental retardation and approximately 40% have congenital heart diseases.

In “Risk Factors for Down Syndrome (Trisomy 21): Maternal Cigarette Smoking and Oral Contraceptive Use in a Population-Based Case-Control Study” (October 5, 2005, http://www.cdc.gov/ncbddd/bd/ds.htm), the CDC estimates the prevalence of Down syndrome as approximately one out of eight hundred live births. The occurrence of this genetic condition rises with increasing maternal age, with a marked increase seen in children of women over thirty-five years of age.

Robert Barnhart and Barbara Connolly report in “Aging and Down Syndrome: Implications for Physical Therapy” (Physical Therapy, vol. 87, no. 10, October 2007) that the life expectancy of people with Down syndrome has increased over the decades, from an average of nine years of age in 1929 to fifty-five years in 2007. Except for the most severe heart defects, many other problems accompanying Down syndrome may be corrected by surgery and helped with exercise, strength training, and a healthy diet. Depending on the degree of mental retardation, many people with Down syndrome are able to hold jobs and live independently.

Birth Defects and National Laws

In April 1998 President Bill Clinton (1946–) signed into law the Birth Defects Prevention Act, which authorized a nationwide network of birth defects research and prevention programs and called for a nationwide information clearinghouse on birth defects.

The Children's Health Act of 2000 authorized expanded research and services for a variety of childhood health problems. In addition, it created the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC. Developmental disabilities are conditions that impair day-to-day functioning, such as difficulties with communication, learning, behavior, and motor skills. They are chronic conditions that initially appear in people aged eighteen years and younger.

The Birth Defects and Developmental Disabilities Prevention Act of 2003 revised and extended the Birth Defects Prevention Act of 1998. It also reauthorized the NCBDDD from 2004 to 2008. The NCBDDD works with state health departments, academic institutions, and other public health partners to monitor birth defects and developmental disabilities, as well as to support research to identify their causes or risk factors. In addition, the center develops strategies and promotes programs to prevent birth defects and developmental disabilities.

The Economic Cost of Long-Term Care for Birth Defects and Developmental Disabilities

In “Increased Risk for Developmental Disabilities in Children Who Have Major Birth Defects: A Population-Based Study” (Pediatrics, vol. 108, no. 3, September 2001), Pierre Decoufle´ et al. examine selected developmental disabilities associated with major birth defects. The investigators combined data from two independent population-based surveillance systems to determine if major birth defects were associated with serious developmental disabilities.

When compared to children who had no major birth defects, the prevalence of developmental disabilities among children with major birth defects was extremely high. Decoufle´ et al. observe that conditions such as mental retardation, cerebral palsy (a disorder marked by muscular impairment usually caused by brain damage), epilepsy (a disorder of the brain that results in seizures), autism (a brain disorder that affects communication, social interaction, and imaginative play), profound hearing loss, and legal blindness “prove costly in terms of special education services, medical and supportive care, demands on caregivers, and economic loss to society.” They conclude, “Our data suggest that birth defects pose a greater burden on society than previously recognized.”

In a similar study, Beverly Petterson et al. investigated the degree to which intellectual disabilities and birth defects occurred together and published their results in “Co-occurrence of Birth Defects and Intellectual Disability” (Paediatric and Perinatal Epidemiology, vol. 21, no. 1, January 2007). The researchers determine that birth defects were present in nearly one-third of children with intellectual disabilities. Looking at the statistics from a birth defects standpoint, children with chromosomal abnormalities, such as Down syndrome, were more likely to have intellectual disabilities than children with non-chromosomal birth defects, such as spina bifida. Petterson et al. show that 97% of Down syndrome children have intellectual disabilities, whereas 18.8% of children with spina bifida do. Children with birth defects of the nervous system, although not chromosomal in origin, also had a high incidence of intellectual disabilities (38.6%).

Most people with birth defects and/or developmental disabilities require long-term care or services. Table 5.7 shows the economic costs of mental retardation, cerebral palsy, hearing loss, and vision impairment in 2003. Of these four developmental disabilities, mental retardation had the highest rate of occurrence, at twelve affected children per one thousand children aged five to ten years, and the highest cost, at over $1 million per person.

LOW BIRTH WEIGHT AND PREMATURITY

Low Birth Weight

In “Births: Final Data for 2005” (National Vital Statistics Reports, vol. 56, no. 6, December 5, 2007), Joyce A. Martin et al. of the CDC indicate that infants who weigh less than twenty-five hundred grams (five pounds, eight ounces) at birth are considered to be of low birth weight. Those born weighing less than fifteen hundred grams (three pounds, four ounces) have very low birth weight. Babies born with low birth weights are more likely to die within their first year or have long-term disabilities than babies not born with low birth weight.

Low birth weight may result from various causes, including premature birth, poor maternal nutrition, teen pregnancy, drug and alcohol use, smoking, or sexually transmitted diseases. Martin et al. note that in 2005 teens had a higher percentage of low-birth-weight babies than women between the ages of twenty and thirty-nine years. (See Table 5.8.) According to the CDC, from 1990 through 2004 cigarette smokers consistently had a higher

percentage of low-birth-weight babies than nonsmokers (12.5% versus 7.8% in 2004) and a higher percentage of very-low-birth-weight babies (1.9% versus 1.5% in 2004). (See Table 5.9.)

According to Martin et al., 338,565 (8.2%) of the 4.1 million live births in 2005 were low-birth-weight infants, matching highs reported in the late 1960s and early 1970s. (See Table 5.8.) African-American (14%) mothers were about twice as likely as non-Hispanic white (7.3%) and Hispanic (6.9%) mothers to have low-birth-weight babies.

Martin et al. indicate that 1.5% of the babies born in 2005 were very-low-birth-weight infants. (See Table 5.10.) The proportion of very-low-birth-weight babies has been increasing since the 1980s, although rates stabilized from the late 1990s through 2004. (See Table 5.9.) Martin et al. report that the birth weight distribution in general has shifted toward lower birth weights since the early 1990s. The researchers explain that the shift is likely influenced by a variety of factors, including “increases in the multiple birth rate, obstetric interventions such as induction of labor and cesarean delivery, older maternal age at childbearing and increased use of infertility therapies.” In 2005 the highest percentage of low-birth-weight babies (21.1%) was with women between the ages of forty-five to fifty-four years. (See Table 5.8.)

Prematurity

The usual length of human pregnancy is forty weeks. Infants born before thirty-seven weeks of pregnancy are considered premature. A premature infant does not have fully formed organ systems. If the premature infant is born with a birth weight comparable to a full-term baby and has organ systems only slightly underdeveloped, the chances of survival are great. Conversely, premature infants of very low birth weight are susceptible to many risks and are less likely to survive. If they survive, they may suffer from mental retardation and other abnormalities of the nervous system.

A severe medical condition called respiratory distress syndrome (RDS) commonly affects premature infants born before thirty-five weeks of pregnancy. In RDS immature lungs do not function properly and may cause infant death within hours after birth. Intensive care includes the use of a mechanical ventilator to facilitate breathing. Premature infants also commonly have immature gastrointestinal systems, which preclude them from taking in nourishment properly. Unable to suck and swallow, they must be fed through a stomach tube.

WHO MAKES MEDICAL DECISIONS FOR INFANTS?

Before the 1980s in the United States, the courts were supportive of biological parents making decisions regarding the medical care of their newborns. Parents often made these decisions in consultation with pediatricians. Beginning in the 1970s medical advancements allowed for the survival of infants who would have not had a chance for survival before that time. Parents' and physicians' decisions became more challenging and complex.

The history of federal and state laws pertaining to the medical care of infants began in 1982 with the Baby Doe regulations. These regulations created a standard of medical care for infants: the possibility of future handicaps in a child should play no role in his or her medical treatment decisions.

The Baby Doe Rules

In April 1982 an infant with Down syndrome was born at Bloomington Hospital in Indiana. The infant also

had esophageal atresia, an obstruction in the esophagus that prevents the passage of food from the mouth to the stomach. Following their obstetrician's recommendation, the parents decided to forgo surgery to repair the baby's esophagus. The baby would be kept pain-free with medication and allowed to die.

Disagreeing with the parents' decision, the hospital took them to the county court. The judge ruled that the parents had the legal right to their decision, which was based on a valid medical recommendation. The Indiana Supreme Court refused to hear the appeal. Before the county prosecutor could present the case to the U.S. Supreme Court, the six-day-old baby died.

The public outcry following the death of “Baby Doe” (the infant's court-designated name) brought immediate reaction from the administration of President Ronald Reagan (1911–2004). The U.S. Department of Health and Human Services (HHS) informed all hospitals receiving federal funding that discrimination against handicapped newborns would violate section 504 of the Rehabilitation Act of 1973. This section (nondiscrimination under federal grants and programs) states: “No otherwise qualified individual with a disability in the United States … shall, solely by reason of her or his disability, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any program, service or activity receiving Federal financial assistance.”

Furthermore, all hospitals receiving federal aid were required to post signs that read: “Discriminatory failure to feed and care for handicapped infants in this facility is prohibited by Federal law.” The posters listed a toll-free hotline for anonymous reports of failure to comply.

Even though government investigators (called Baby Doe squads) were summoned to many hospitals to verify claims of mistreatment (the hotline had five hundred calls in its first three weeks alone), no violation of the law could be found. On the contrary, the investigators found doctors resuscitating babies who were beyond treatment because they feared legal actions. Finally, a group led by the American Academy of Pediatrics filed suit in March 1983 to have the Baby Doe rules overturned because they believed them to be harsh, unreasonably intrusive, and not necessarily in the best interests of the child. After various legal battles, in 1986 the U.S. Supreme Court ruled that the HHS did not have the authority to require such regulations and invalidated them.

Child Abuse Amendments of 1984 and Their Legacy

As the Baby Doe regulations were being fought in the courts, Congress enacted and President Reagan signed the Child Abuse Amendments of 1984 (CAA).

The CAA extended and improved the provisions of the Child Abuse Prevention and Treatment Act and the Child Abuse Prevention and Treatment and Adoption Reform Act of 1978. The CAA established that states' child protection services systems would respond to complaints of medical neglect of children, including instances of withholding medically indicated treatment from disabled infants with life-threatening conditions. It noted that parents were the ones to make medical decisions for their disabled infants based on the advice of their physicians. These laws have been amended many times over the years, most recently by the Keeping Children and Families Safe Act of 2003, without voiding the states' and parents' responsibilities to disabled infants.

Born-Alive Infants Protection Act of 2001

The Born-Alive Infants Protection Act of 2001 was signed by President George W. Bush (1946–) in August 2002. The purpose of the law is to ensure that all infants born alive, whether developmentally able to survive long term, are given legal protection as people under federal law. The law neither prohibits nor requires medical care for newly born infants who are below a certain weight or developmental age.

David Boyle et al. of the American Academy of Pediatrics Neonatal Resuscitation Program (NRP) Steering Committee state in “Born-Alive Infants Protection Act of 2001, Public Law No. 107-207” (Pediatrics, vol. 111, no. 3, 2003) that the law:

Should not in any way affect the approach that physicians currently follow with respect to the extremely premature infant. … At the time of delivery, and regardless of the circumstances of the delivery, the medical condition and prognosis of the newly born infant should be assessed. At that point decisions about withholding or discontinuing medical treatment that is considered futile may be considered by the medical care providers in conjunction with the parents acting in the best interest of their child. Those newly born infants who are deemed appropriate to not resuscitate or to have medical support withdrawn should be treated with dignity and respect, and provided with “comfort care” measures.

MEDICAL DECISION MAKING FOR OLDER CHILDREN

Under U.S. law, children under the age of eighteen cannot provide legally binding consent regarding their health care. Parents or guardians legally provide that consent, and, in most situations, physicians and the courts give parents wide latitude in the medical decisions they make for their children.

Religious Beliefs and Medical Treatment

When a parent's decisions are not in the best interests of the child, the state may intervene. In “Child Welfare versus Parental Autonomy: Medical Ethics, the Law, and Faith-Based Healing” (Theoretical Medicine and Bioethics, vol. 25, no. 4, July 2004), Kenneth S. Hickey and Laurie Lyckholm explain that forty-six states exempt parents from child abuse and neglect laws if they rely on spiritual healing rather than on having their minor children receive medical treatment. The states without these laws are Hawaii, Massachusetts, Nebraska, and North Carolina. Confusing this issue, however, is the agreement of the courts that religious exemption laws are no defense against criminal neglect. The legal distinction between practicing one's religion and criminal conduct in the treatment of one's children remains unclear.

Adolescents

The United Nations defines adolescents as people between the ages of ten and nineteen. Early adolescence is from ten to fourteen years, whereas late adolescence is from fifteen to nineteen years.

David R. Freyer of Michigan State University indicates in “Care of the Dying Adolescent: Special Considerations” (Pediatrics, vol. 113, no. 2, February 2004) that over three thousand U.S. adolescents die each year from chronic illnesses such as cancer, heart disease, acquired immunodeficiency syndrome, and metabolic disorders. Even though many laws concerning minors have changed, such as allowing minors to seek medical treatment for reproductive health and birth control services without parental consent, most states have no laws for end-of-life decisions by minors who are adolescents.

Freyer notes that even though U.S. laws do not consider adolescents under the age of eighteen to be competent to make their own health-care decisions, health-care practitioners often do. A broad consensus has developed among pediatric health-care practitioners, developmental psychologists, ethicists, and lawyers that by the age of fourteen years terminally ill adolescents (unless they demonstrate otherwise) “have the functional competence to make binding medical decisions for themselves, including decisions relating to the discontinuance of life-sustaining therapy and other end-of-life issues.” According to Freyer, some experienced health-care practitioners think that terminally ill children as young as ten years “often meet the criteria for having functional competence and should have substantial, if not decisive, input on major end-of-life care decisions, including the discontinuation of active therapy.”