Infants, Public Policy and Legal Issues
INFANTS, PUBLIC POLICY AND LEGAL ISSUES•••
Medical decisions regarding infants vary in the seriousness of their consequences for infants, families, health providers, and society. They range from decisions about home birth and male circumcision—debatable but generally agreed to be matters of private choice—to vaccination, genetic screening, female genital mutilation, and high technology interventions for critically ill newborns. In the United States, parents' legal right to select even the most invasive treatment— or to refuse lifesaving measures—was nearly unquestioned until late in the twentieth century. From the early 1980s into the early twenty-first century, this right became a focal point of litigation, extensive scholarly comment, and public concern. Because much of the legal and public policy debate has focused on infants who require life support, decision making will be discussed here in that context.
The Infant's Interests
The increasing complexity of decisions about the treatment and nontreatment of infants has exacerbated the struggle over who may make these decisions. Advances in medical technology, surgical procedures, and pharmaceuticals allow severely compromised infants to survive. These new technologies frequently entail painful procedures for the infant and the possibility of adverse effects that further attenuate the infant's already fragile hold on life. For example, resuscitation techniques allow many more premature infants to survive; but these infants frequently need prolonged ventilatory assistance and invasive diagnostic and treatment procedures. They are also at increased risk both for cerebral hemorrhages, which create severe neurological deficits, and for significant treatment-related adverse effects, such as blindness and deafness.
Decisions on treatment have traditionally rested with parents, healthcare providers, or some combination of the two. Since the 1980s, the decision-making powers of these parties have been challenged. In the United States, the older body of law has been partially eroded by legislative enactments and court decisions that highlight the rights of the infant (Cooper). Indeed, recognition of the infant's individual rights arising from the celebrated 1982 Baby Doe case became the basis for substantial federal intervention in medical practice and family life.
Baby Doe was afflicted with Down syndrome, a chromosomal abnormality resulting in mental retardation and a propensity for cardiac and other congenital malformations. The infant had such a congenital defect, a tracheoesophageal fistula (an abnormal passage connecting the trachea and esophagus), which if not surgically corrected results in death. The parents, after consultation with and with the concurrence of their attending physician, refused to consent to the surgery, primarily on the grounds that a child with Down syndrome could not attain a "minimally acceptable quality of life." That conclusion was, and continues to be, strongly disputed. A trial court, however, ruled that the parents had the right to refuse surgery for their child (In re Infant Doe, 1982).
Immediately after the infant's death, President Ronald Reagan directed the U.S. Department of Health and Human Services (DHHS) to issue regulations protecting infants with disabilities from treatment discrimination by parents, healthcare providers, or both. Through the regulations, issued in March 1983, DHHS claimed authority under the Rehabilitation Act of 1973 to order healthcare facilities receiving federal assistance to provide sustenance and aggressive medical treatment to infants with disabilities. The regulations required posting signs announcing the new federal protection in treatment areas of hospitals; established "Baby Doe Squads" to investigate alleged instances of treatment discrimination; and provided for a toll-free hot line to facilitate the reporting of discrimination (Lawton, Carder, and Weisman). Most healthcare providers, as well as many members of the public and of Congress, reacted negatively. A prestigious national group studying healthcare decisions— the U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (hereafter, U.S. President's Commission)—and the American Academy of Pediatrics (AAP) both vehemently criticized the regulations. The U.S. President's Commission argued for a standard that would focus on the "best interests" of the infant. The AAP, along with several other parties, sought help from the federal courts, which invalidated the regulations only a few weeks after they became final (American Academy of Pediatrics v. Heckler, 1983).
DHHS next produced the "Baby Doe II" regulations, modifying the requirements for signs and providing for an infant-care review committee in each hospital rather than an outside investigative team. These regulations too were rejected—ultimately by the U.S. Supreme Court—on the grounds that the Rehabilitation Act did not give DHHS any authority to regulate parental decisions about infant treatment (Bowen v. American Hospital Association, 1986).
In a final effort to influence the care of newborns, Congress enacted the Child Abuse Amendments of 1984, which directed DHHS to develop regulations governing infant care and guidelines for hospital infant-care review committees. As of 1985, federal funding for state child-abuse prevention and treatment efforts was conditioned on compliance; only a few states chose to decline the funding. Under the amendments, the child protective service agency of a state is the only party that may initiate an action of neglect. Nevertheless, the act broadened the definition of child abuse to include "withholding of medically indicated treatment," thereby affecting physician practice standards. The amendments require that an infant with a disability receive appropriate nutrition, hydration, medication, and the "most effective" treatment according to the reasonable judgment of the treating physician. In only three situations may treatment be withheld: (1) when the child is chronically and irreversibly comatose; (2) when treatment could not save the child's life for any substantial length of time; or (3) when the treatment would be inhumane and "virtually futile" with respect to survival. The distinction between inability to save the life (situation 2) and "virtually futile" (situation 3) lies in the "degree of probability or uncertainty in determining the futility of treatment" (Boyd and Thompson). This distinction has become increasingly difficult to draw, in the context of both withdrawal and continuation of treatment.
In the wake of the Child Abuse Amendments, the U.S. President's Commission continued to advocate that the standard for infant treatment or nontreatment be based on the "best interests" of the infant. This standard draws on the standard of "substituted judgment" that is often applied to incapacitated, but once competent, patients. In such cases, a proxy attempts to make treatment decisions, as she or he believes the patient would, if able. For newborns, the commission recommended that decision makers attempt to assess the best interests of the infant "by reference to more objective, societally shared criteria." In sum, the commission recommended that decision makers "choose a course that will promote the patient's well-being as it would be conceived by a reasonable person in the patient's circumstances"(U.S. President's Commission, pp. 135–136). Numerous courts have since adopted the "best interests" standard in making infant treatment decisions, and it has become the prevalent standard.
Ascertaining the infant's best interests generally falls to the primary caregivers—in most cases, the parents, who, although assisted by numerous directors, nurses, and social workers, must make and bear the brunt of these difficult decisions. Unfortunately, the guidelines available to decision makers from the U.S. President's Commission and subsequent case law are far from concrete. In describing the "best interests" standard, the commission stressed that normal adults must not impose their values or external concerns upon the beleaguered infant. In its guidelines, the commission stated that futile treatment for severely compromised infants with a lifespan of hours or days need not be provided; at the other end of the spectrum, the commission condemned the withholding of treatment for a correctable problem when the infant was afflicted with an unrelated, non-life-threatening disorder, such as Down syndrome (U.S. President's Commission, 1983). For the vast territory in between, however, there is little guidance.
Determining the best interests of a compromised infant using the commission's guidelines presents considerable problems of interpretation (Rhoden, 1985). Some believe that the best interests of the infant require providing maximum treatment in virtually all cases (Smith; Wells; Wells, Alldridge, and Morgan). Under this construction, infants express their interest in surviving by responding positively to treatment (Cooper). Others believe that nontreatment may be justified when the infant's life can be viewed as an injury rather than as a gift to the infant; an injury is inferred when there is no prospect of meaningful life, which might occur because: life expectancy is very short, there are severe mental deficits, or no curative or corrective treatments are available (Weir).
Some argue that the rational interests of the infant in treatment or nontreatment should not be limited to avoiding suffering (including the pain of treatment) and to minimizing physical and mental deficits, but should also include factors such as the burden on the family and society (Wells, Alldridge, and Morgan; Smith). Such a view holds that when an infant's condition lacks any "truly human qualities" or "relational potential," the best decision is not to treat (Smith, p. 56). One can presume that an infant has an interest in his or her "standing and memory within the family" (Mitchell, p. 341). If so, the infant's best interests cannot be determined in isolation from the feelings and concerns of others. Although such "quality of life" considerations are given short shrift under the current federal law and under the U.S. President's Commission's best-interests standard, they are an inevitable subtext to the debate (Rhoden).
U.S. jurisprudence still strongly favors parents as decision makers for children's medical care, although it does not accord constitutional status to this preference (Cruzan v. Director, Missouri Department of Health, 1990). Though some dispute the basis for a parental preference—asking whether it is for the parents' sake, the children's, or society's (Schneider)—the law is willing to assume that parents, with physicians' help, generally can best judge the child's interest and will best protect it. Moreover, it seems fair to defer to those who will live intimately with the results of the decisions.
Nevertheless, the wisdom of this presumption is challenged on many fronts, both from within and outside the legal establishment. Parental authority is not absolute, but rather conditional. It is settled law that the state may intervene if necessary, superseding parents' authority by proving them unable or unwilling to safeguard the child's welfare. In the late 1990s and early 2000s, there was increasing willingness to resort to child-endangerment provisions to subvert parental decision making with respect to critically ill infants (Tabatha R. v. Ronda R., 1997; In re K.I., 1999; In the Matter of D.R., 2001). Some scholars have posited that paradoxically greater deference is given to parental authority when an adolescent is involved as compared to when an infant is involved, with parents of compromised infants frequently being referred to child protection authorities for questioning or opposing the recommendations of physicians (Rosato). In extreme cases, parents may be criminally prosecuted for failing to fulfill their responsibility to provide ordinary care (Lundman v. McKown, 1995).
Many scholars and practitioners question how well parents are able to judge the needs of a critically ill infant. The task is daunting, because the medical specialists on whom parents depend often cannot predict a child's chances of survival or normality with any certainty at the point when decisions must be made, nor adequately warn of the suffering that treatment may eventually entail (Bouregy). In addition, parents come to the task exhausted by childbirth and the child's medical crisis, grief-stricken, and in near shock (Jellinek et al.). Physicians do not always share essential information with parents, and parents often absorb poorly the limited information they receive (Perlman et al.). Even observers who find parents the best possible decision makers speak of their vulnerability during the crisis, especially to manipulation by physicians and others (Rushton and Glover).
On the other hand, parents may wholly reject medical guidance. Parents have sought to prevent necessary medical treatment of their infants despite entreaties of medical professionals (In the Matter of D.R., 2001; HCA, Inc. v. Miller, 2000). Conversely, parents have fought to continue extraordinary medical intervention for infants and children, despite physicians considering such treatment virtually futile in terms of ultimate survival (In the Matter of Baby "K", 1994; Rideout v. Hershey Medical Center, 1995; In re K.I., 1999). Several have protested the removal of a legally dead infant from life support, insisting on continued treatment (In the Matter of Long Island Jewish Medical Center, 1996). In other cases, parents have commandeered treatment; in one notorious incident, a father, Rudy Linares, disconnected his infant son's respirator and held off nurses at gunpoint until the boy died (Gostin).
A second criticism of giving parents authority is that they may deliberately elect not to satisfy an infant's dire needs. In this view, it is naive to posit an identity of interest between infant and parent. Parents guard their own interests, those of the family as a unit, and those of current and future siblings—all of which may be gravely threatened by the sick newborn. Some observers of such behavior describe it neutrally. To a sociobiologist, "individual infants may attempt to extract greater investment from their parents than the parents have been selected to give," causing parents to reduce their investment in the child (Hrdy, p. 410). A philosopher writing on the subject actively encouraged parents to weigh the child's interests, including life itself, against others' needs: "The neonate is not born into the family circle so much as outside it, awaiting inclusion or exclusion. The moral problem the parents must confront is whether the child should become a part of the family unit" (Blustein, p. 166). But other commentators condemn any deviation on the part of parents from pursuit of the child's interest. Among these were the proponents of the Baby Doe regulations and, later, a majority of the U.S. Supreme Court, which noted that family members "may have a strong feeling—a feeling not at all ignoble or unworthy, but not entirely disinterested either—that they do not wish to witness the continuation of the life of a loved one which they regard as hopeless, meaningless, and even degrading" (Cruzanv. Director, Missouri Department of Health, p. 286). Echoing this view, in a case from 2000 (HCA, Inc. v. Miller), a couple sued their healthcare providers for having resuscitated their prematurely born infant, against the parents express wishes, when all agreed that the infant would be severely impaired if she survived.
Practitioners—doctors, lawyers, and social workers— observe parents acting from mixed motives in accepting or rejecting medical care. By forgoing treatment, they may hope to spare the infant suffering and lessen their own, avoid financial and other burdens on the family, and/or prevent the child's eventual institutionalization (Newman). They may instinctively fear the damage to parent-child relations created by medicine's lifesaving technology (Boyce; Kratochvil, Robertson, and Kyle).
Not infrequently, the parents' religious beliefs discourage medical intervention. When the infant is in peril and medical attention will ameliorate or cure the illness or disability, there is an increasing tendency to seek a court order to terminate parental rights to further the best interests of the child. In a case from 2001 (In the Matter of D.R.), the parents were followers of the Church of Truth, which rejects medical treatment of all illnesses in favor of spiritual healing. Their infant was beset with developmental delays and numerous disabilities, including a severe seizure disorder. Unmedicated, the seizure disorder was likely to cause additional neurological injury to the infant, worsening her already poor prognosis. At the insistence of the paternal grandparents, the child came to the attention of physicians and child protection authorities. The parents steadfastly refused to comply with the infant's medication regimen, and ultimately the court deemed the child deprived and neglected, awarding custody to the paternal grandparents. The court professed respect for the parents' religious preferences and their right to raise their child in concert with those preferences but was bound to take action to preserve the child's health and welfare. The court noted that the statutory requirements for deeming the infant deprived had little to do with the parents' religious beliefs, but rather turned on the child's need of special medical care and the parents' willful failure to provide such care.
This increasingly protective posture toward the infant is evident even before birth. In the case of a pregnant Jehovah's Witness with a dangerously low blood count, a court asserted custody over the thirty-four-week-old fetus and mandated blood transfusion against the mother's will to safeguard the fetus. An appeals court subsequently held that the unconsented-to blood transfusion was an invasive medical procedure and a violation of the mother's rights to bodily integrity (In re Fetus Brown, 1997). This case demonstrates the willingness of the courts to favor the alleged best interests of the child, or even fetus, over the well-enunciated religious beliefs of the parent.
Parents also may insist on extraordinary measures in an attempt to be faithful to their understanding of their religion's tenets, as well as to assuage perceived guilt; or to please the other parent, friends, and family; or from selfless devotion to the child that the parent cannot reconcile with consenting to death (Nelson and Nelson). In such cases, ultimately, the best interests of the child are likely to be valued above the parents' beliefs and needs. Before a decision is made to cease extraordinary life-support measures in opposition to the parents' wishes, however, the parents must be afforded appropriate due process to argue for continuation of therapy (Rideout v. Hershey Medical Center, 1995). Although parental rights are not absolute, they are a formidable factor in medical decision making for infants and children and remain so even if the parents are not model parents (Tabatha R. v. Ronda R., 1997).
The law is relatively clear in its expectation of parents, though the mandate may be excruciatingly difficult to follow. Federal and state constitutions, as well as statutory and decisional law, accord equal status to all living human beings. Parents must act in their child's interest, weighing the immediate physical and long-term emotional suffering for the infant to be expected from aggressive treatment against the consequences of no or lesser treatment. Thus, while some object to consideration of the infant's quality of life in these decisions, such factoring is central to the parents' legal duty.
Healthcare Providers' Interests
Historically, treatment decisions rested with the midwife or physician caring for the newborn and its mother. Although parents ostensibly owned their children, they routinely ceded control to the healthcare provider. During the twentieth century, the decision-making model shifted to one in which the parent and the provider jointly decided on medical intervention for the infant. In recent decades, the parents' role has markedly increased as a result of a greater number of treatment options, increased parental knowledge and awareness, and greater respect for patient autonomy (Cooper).
Organized medicine has not opposed this development. A 1975 AAP survey indicated broad support among pediatricians for the proposition that infant treatment decisions should be made jointly by the parents and physician, with the parents taking the pivotal role. In a 1990 report, the Society of Critical Care Medicine's Task Force on Ethics recommended that parents set priorities for the treatment of critically ill pediatric patients. The American Medical Association also defers to parents but emphasizes use of the best-interests standard proposed by the U.S. President's Commission.
Physicians readily acknowledge the frequent conflicts between their dual commitment to save lives and to alleviate suffering. In reality, these factors are rarely the only ones that affect the physician treating a critically ill infant. Healthcare providers may have varying philosophies with respect to treatment of infants afflicted with certain disabilities; they may also be influenced by their research agendas, possess insufficient knowledge to assess accurately the infant's disability and prognosis, or be influenced by real or perceived risk of legal liability (Rushton and Glover; Rosato). In addition, physicians focus on the diagnosis rather than on the prognosis and long-term care of their infant patients (Perlman et al.). As a result of all these factors, physicians may not be optimally effective partners for the parents in the decision-making process. For example, an obstetrician may act in a paternalistic fashion toward a patient, a mother, seeking to protect her from the tragedy of dealing with the fate of an impaired infant. Alternatively, a neonatologist may be overly optimistic in judging and discussing with the parents the infant's potential for meaningful life (Cooper).
Frequently, nurses serve as the primary information conduit between doctors and parents, and naturally there are biases inherent in their perspective, too. Because they are the healthcare providers who care for patients most intimately, they may personalize severely disabled infants beyond reality in order to deal with the burden of nursing them on a day-today basis. As a result, nurses may be incapable of advocating against treatment when it is futile and thus be unable to serve as effective advocates for either the infant or the family. In addition, they are limited by the practical realities of their role in the employment hierarchy of the hospital (Mitchell).
In some cases, healthcare facilities and providers may overtreat a severely compromised infant to avoid legal liability. The Linares case, while an extreme example, arose from tensions that are often present. The healthcare providers in that case, despite their acknowledged sympathy and agreement with the father's desire for his son's death, insisted for many months on treating the infant. They did so, they said later, because they believed that state law required continued life support. Critics alleged that individual healthcare providers and the facility (through its lawyer) had abandoned the best interests of both the child and the family to protect themselves. Indeed, some see an "overwhelming fear of possible, indeed theoretical, adverse legal repercussions" among healthcare providers (Nelson and Cranford, p. 3210). This fear is not unfounded; as mentioned earlier, in the 2000 HCA, Inc. v. Miller case, healthcare providers were sued, albeit unsuccessfully, for wrongful resuscitation of a severely premature infant. On the other side of the treatment coin, the 1994 Baby "K" case, in which healthcare providers were forbidden to refuse to provide treatment they considered futile, also speaks to the risk of legal reprisal. There is no safe harbor that ensures freedom from liability for healthcare providers in these difficult, emotionally charged situations.
A society such as that of the United States has numerous, sometimes contradictory, interests in the healthcare of infants. These include preservation of the life and health of the next generation; the guarantee of the rights of individuals; the support of families; the conservation and wise expenditure of economic resources; the maintenance of a just and predictable legal system; and the compromise between—or at least the orderly expression of—clashing values of groups within society. Two of these issues, cost and the social effect of litigating treatment decisions, are discussed below.
Concern for the cost of neonatal intensive care—the most expensive element in the care of infants—preceded the currently intense focus on health costs in general. This treatment is the exception to the rule that the United States directs resources disproportionately to adults, especially the elderly. Technological advances in the treatment of newborns halved the neonatal death rate between 1970 and 1980 (U.S. President's Commission, 1983). Since then, the extraordinary cost of the technology has helped to focus attention on how many and which infants should be treated.
Many families cannot cover the cost, and there is debate over whether the resources available for a particular infant should be taken into account by decision makers. Most commentators share the view expressed in a seminal article from 1975 on the subject: "Just as a parent is not obligated to attempt to save a drowning child if the parent cannot swim, neither is he obligated to incur enormous expense in providing treatment with a slight chance of success" (Robertson, p. 236; see also Newman). No judicial decision, however, accepts the proposition that personal resources should dictate life or death. Usually, the issue is avoided in litigation. When it is specifically cited, a typical court reply is that the "cost of care in human or financial terms is irrelevant" (In re Care and Protection of Beth, p. 1383).
Whether or not cost should affect decisions on treatment, there is evidence that it does. Although providers may not abandon a patient without incurring liability, a study comparing medical need to the services sick newborns receive indicates that healthcare providers do not allocate services solely according to need, but are instead influenced by the newborn's insurance coverage—private, governmental, or none (Braveman et al.). Governmental insurance is less attractive to providers than private insurance because government does not reimburse the full cost of care. Thus, at times it appears that while society insists on extending the life of premature and seriously ill infants, it simultaneously refuses to absorb the cost of their immediate and long-term care—a result described as "political hypocrisy in its cruelest form" (Holder, p. 113).
A second salient issue for society is whether it has erred by assigning this category of treatment decisions increasingly to the courts. Criticism of the failure to treat Baby Doe was widespread and severe, but the legal processes that ensued were also criticized. Numerous objections are raised to the removal of medical decisions from the private sphere. The judicial system may be too cumbersome and costly and may further traumatize family members and invade their privacy. The publicity surrounding infant-care cases may prevent other parents from exercising their right to forgo treatment. In addition, the practice of medicine is negatively affected. Explicit direction from some courts to extend life whenever possible and the implicit threat of litigation reinforce U.S. medicine's alleged tendency to overtreat (Newman). For example, one in three neonatologists state that the Baby Doe regulations require treatment not in an infant's best interest (Fost). Finally, in investigating and deciding these cases, judges and other officials must choose among competing moral and religious philosophies, a problematic choice in a society that values diversity (Newman).
Obviously, the law is disadvantaged in attempting to supervise medical care for particular infants. In most jurisdictions, understanding of the legal requirements for forgoing treatment is imperfect, even among lawyers (Gostin). The scarcity of prosecutions and precedents suggests a high degree of social ambivalence on this subject—leading, according to Carl Schneider, to "a troubling disjunction between the law on the books, which seems to make neonatal euthanasia criminal, and the law in action, which does not punish it" (p. 152). Schneider further contends that there is no social consensus on the central questions: What is human life? When is death preferable to life? What do parents owe their children? What does society owe the suffering? As a result, he and others see a tendency to abandon the search for substantive principles in the law and instead adopt procedures for reviewing individual cases (Schneider).
One such procedure is the assignment of a role in decision making to institutional ethics committees. Virtually unknown before 1983 (fewer than 1 percent of U.S. hospitals had such committees at that time), they came to prominence through two avenues. First, the influential U.S. President's Commission report in 1983 recommended their use; second, the establishment of committees became a major point of compromise in negotiations between the government and healthcare providers over the Baby Doe regulations (Lawton, Carder, and Weisman). By 1986 the AAP, which had strongly endorsed the committees, found them in 60 percent of hospitals.
In some instances, the committees have functioned as it was hoped they would. For example, in the case of Baby "L," a physician applied to the hospital's ethics committee for permission to cease extraordinary treatment of an infant who was capable only of pain perception and to transfer the infant to another facility and provider. The parent opposed this action and sought an opinion from the courts. The court upheld the decision of the hospital and the physician and allowed the transfer of the child to a facility willing to continue treatment (Paris, Crone, and Reardon). In other cases, however, a hospital's ethics committee failed to persuade either the parent or the trial court that treatment was futile (In the Matter of Baby "K", 1994; Rideout v. Hershey Medical Center, 1995). Although concerns are expressed about the committees' role, makeup, criteria for decision making, influence, results, and effectiveness, ethics committees appear entrenched as a visible, albeit not dispositive, representative of society in controversies over care for infants.
Long-standing respect for the discretion of parents and healthcare providers in making infant treatment decisions appears to be gradually giving way to greater emphasis on the rights of the infant. Debate is ongoing as to whether this emphasis has been overaccentuated, to the detriment of parents and critically ill infants alike. Parents and healthcare providers continue to look to the courts and society at large for guidance, finding precious little consensus.
anne m. dellinger
patricia c. kuszler (1995)
revised by patricia c. kuszler
SEE ALSO: Abuse, Interpersonal: Child Abuse; AIDS; Children; Clinical Ethics; Family and Family Medicine; Healthcare Resources, Allocation of; Infants, Ethical Issues with; Infants, Medical Aspects and Issues in the Care of; Life, Quality of: Quality of Life in Clinical Decisions; Maternal-Fetal Relationship; Medicaid; Pediatrics; Research Policy: Risk and Vulnerable Groups
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