Treatment approaches for infants with developmental impairments

Ethics

Treating Impaired Infants

Nearly 20 years have passed since the Reagan administration first drafted the Baby Doe rules that mandated treating impaired newborns unless they are permanently comatose, any treatment would merely prolong their death, or treatment would not be effective. These rules were mainly inspired by clinical meetings during the late 1970s and early 1980s, when children born with multiple congenital irregularities, were allowed to die. The Baby Doe rules symbolize the first U.S. legislative attempt to control the treatment decisions of physicians regarding involvement at the beginning of life. Since that time, policymakers and jurists have pondered the proper role of federal policy in regards to this. Some have held these rules, insofar as they seek to prevent discrimination against disabled children as well as certain forms of child abuse and neglect. The rules have been condemned as being too far away from the reality of clinical decision-making, not in agreement with regulations regarding hopeless adults, or unproductive in light of other, less defensive policies concerning the medical care of children (Morrow, 2000).

The argument regarding Baby Doe continues with the debate usually between those protecting the absolute value of life and those who believe in the complete priority of liberty. The extreme division may be a natural result of rhetoric in public debate, which is often emotionally charged and burdened with canonical promises. Controversy often leads to difficulty. Behind the veil of rhetoric and polarization lies the insuperable plurality of moral understandings, the intrinsic uncertainty of medical prognoses, and the inherent ambiguity of quality-of-life assessments. Recent disagreement surrounding the proper care of imperiled newborns has come out from the explosion of medical technologies. Technological expansion in the treatment of infectious disease and of the difficulty of premature and low birth-weight infants have reduced infant morality rates, increased survival rates, and virtually gotten rid of severe forms of certain diseases. Yet the aptitude to save lives places parents and physicians in a morally unsafe position. They must determine when the costs of expensive involvement outweigh the benefits. These decisions are particularly troublesome because they usually necessitate immediate and irreversible action, though they are always tentative and shrouded in uncertainty (Morrow, 2000).

The importance of allowing certain infants to die remains a significant feature of the moral justification for refusing to treat impaired newborns. This justification derives mainly from the doubtful ontological status of these infants. While all newborns are human, they normally lack the characteristics of personhood, such as the inherent cognitive capacities that present moral responsibility. Newborns don't have a meaningful idea of self, they cannot predict the consequences of their actions, and they cannot deliberate sensibly. Furthermore, they are not recognized extrinsically as useful members of society. Religious traditions often suggest that the initial relationships of newborns to society may be deemed less valuable of emotional and moral investment than the more adult relationships of older children and adults to society (Morrow, 2000).

The current federal regulations about the treatment of extremely ill, premature, or terminally ill infants who are less than one year of age, are widely known as the Baby Doe rules. These rules went into effect over twenty years ago. They are modifications to the Child Abuse and Protection and Treatment Act, which are federal funding necessities for states to receive grants. Many neonatologists and other pediatricians have reported that these rules instantly changed the standards of care and restricted clinicians' and parents' abilities to select individualized treatment plans and act in the best interests of infants (Kopelman, 2005).

However more than twenty years later these rules are still in place, and so does the support of them by the American Academy of Pediatrics . These rules are contradictory with other AAP guidelines that recommend individualized decision-making by clinicians and families in regards to seriously ill children based on the best-interests standard. The alternative between the Baby Doe rules and the best-interests standard is very significant. In an example of a family that was faced with a decision about how to respond sympathetically to their exceptionally premature and severely impaired newborn it can be shown how difficult the decisions can be. In this situation there were members of the parents' extended family present, including an aunt who was a hospice nurse and a cousin who was an adult pulmonologist. These two family members had broad experience in caring for dying adults. The whole family agreed that given the infant's poor diagnosis and suffering intrinsic to his illness and treatments, it was in his best interest to have comfort care and to relinquish aggressive life-sustaining treatments. The three neonatologists present also agreed that this plan would be in the infants' best interest but said that they were constrained by the Baby Doe rules and would have to continue maximal treatments because the treatments for the infant's condition were not virtually futile in terms of survival, he was not dying, and the infant was not in a chronic and irreversible coma. The hospice nurse and pulmonologist were shocked that the best-interests standard could not be used for infants in the way it was routinely used for incompetent adults lacking advance directives (Kopelman, 2005).

The best-interests standard is a moral and legal standard for guiding decisions for persons lacking decision-making capacity and who have not left advance directives; it should be used by guardians, judges, clinicians, or other responsible persons for making decisions for the incompetent person by assessing the net benefits and burdens and selecting the best available options for the incompetent person (Kopelman, 2005).

The AAP has been a leader in figuring out how to extend compassionate help to children and their families who must choose between providing palliative cares and pursing aggressive life-support interventions. The AAP Committee on Fetus and Newborn, believes that the medical treatment of infants should be based on what is in their best interest. On the other hand, because the infant's best interest is not always apparent, parents and health care givers are often faced with difficult treatment decisions when faced with the situation of a severely ill, extremely premature, or terminally ill infant. Their suggestions for individualized decision-making using the best-interests standard are extensively supported in the pediatric literature and in other AAP rules. These guidelines are consistent with recognized principles of care for incompetent adults (Kopelman, 2005).

The 1996 AAP Committee on Bioethics also agrees that decision-making for all children regardless of age should be individualized and made by the guardians and physicians based on what are best for the infants. They disagree that this policy is consistent with the Baby Doe regulations and that those who think otherwise misinterpreted these requirements. This committee's view is similar to some members of the AAP leadership, who also hold that, properly understood, the Baby Doe regulations do not restrict doctors and families from using reasonable medical judgment, selecting individualized treatment plans, and serving the best interests of infants (Kopelman, 2005).

During the past decade, continuous advances in neonatal intensive care have further increased the possibilities to treat severely ill newborn infants. This potential benefit exists for extremely small or premature infants, for congenital abnormalities and severe perinatally acquired syndromes, and for obstetrical and neonatal management. However, the number of decisions to forgo potentially life-sustaining treatments, which was already noted to be substantial for this age group in 1995, had only slightly increased from 1995 to 2001. A small rise in the use of drugs with possible life shortening effect during this period might have been due to a growing attention for alleviation of pain or other symptoms in newborn children (Vrakking, van der Heide, Onwuteaka-Philipsen, Keij-Deerenberg, van der Maas and van der Wal, 2005).

Surrogate decision-making is necessary in neonatal contexts, as neonates have no way of representing themselves. Surrogate decision-making for neonates is significantly different from other modes of decision-making; most obviously, decisions are made by one person for another in this case, for non-autonomous others. Surrogate decision-making for neonates differs from other cases, which typically involve once-autonomous persons no longer capable of making decisions for themselves, but whose interests are well enough known to others to permit relatively unproblematic decisions on their behalf and grounded in their interests. Importantly, these persons' interests can be known to others largely on the basis of previous autonomous decisions and actions. However, neonates have never been autonomous, hence cannot have developed such interests.

The ethical focus of surrogate decision-making for neonates is the best interests of the neonate. Best interests require judgments as to what, on balance, is most conducive to neonate's interests. Some implications for the use of best interests concern the judgment of what is in the neonate's best interests, and such judgments require skilful interpretative ability. In using such judgment for any one person there is a real possibility of conflict concerning two equally contending considerations, and between parties involved in deliberation and decision-making.

The ethical issues of pain and withdrawal of life support are good examples to show how well-being and good are useful guides for neonates' interests. Newborn pain is an example of an everyday occurrence where achieving neonates' interests are through making them comfortable and pain-free. As the neonatal intensive care nursery gives rise to many potentially painful procedures, a dilemma exists for caregivers in assessing if sick and/or premature infants are in pain (Nagy 1998). Although newborn pain affects the short-term interests there are possibilities that the lasting effects may also be harmful (Spence, 2000).

For a long time, the medical profession has given its members with the knowledge and skills that are required to treat disease and deformity. Physicians have often been the front line of technological mastery, increasingly emotional with the onerous responsibility of determining when intervention is suitable. Underlying this responsibility is a foundation of core principles, including beneficence, non-malfeasance, and compassion. Conscious use of these principles is not often supportive when the best interests of patients are diverse and apply to many relevant but competing parties. The dispute of applying center principles to complex cases at the beginning of life can confidently engage the morality and empathy of the contemporary medical enterprise (Morrow, 2000).

Clinical encounters for parents are often new and harsh experiences, where expectations and prospects of health and happiness can be endangered by the birth of even a mildly deformed or impaired child. Parents are almost always ill-equipped for premature or hazardous delivery. They often feel mistreated, surprised, mad, and culpable. They may feel undeserving or incapable to assume the role of caregiver. In negotiating the details of intensive care, neonatologists may confuse parents and thereby distort the balance of power. Therefore, empathy is chief when they deliver clinical decisions. Neonatologists must anticipate the vulnerability of parents, collaborate with them, and gently guide them through their decision, especially when parents are hostile or recalcitrant (Morrow, 2000).

All physicians should talk about the standards of care appropriate to similar clinical situations. For instance, failure to treat an infant with a mild case of Down syndrome and correctable intestinal atresia is inconsistent with best medical practice and thus neglectful. Useful and comforting actions a physician can use include introducing parents to families who have come upon similar dilemmas, and connecting them with outreach organizations that help parents raise children with special needs. Likewise, searching for adoptive parents may disclose an abundance of families who are willing to raise such a child, which in turn would seem to weaken the moral acceptability of hastily employing selective infanticide (Morrow, 2000).

The moral difficulties of Baby Doe have required physicians to deliberate the most accountable ways to put into practice new technologies. Federal regulations have often had significant resistance, especially by physicians who think that the medical profession can meet the moral disputes of medicine without duress. Such optimism is warranted if physicians fulfill their duty to explain to the public the ineradicable presence of disease, disability, and less-than-maximum utility in our society. At that point in time, they keep hold of the right to advocate for the sensible and compassionate use of life-saving intercessions. When physicians employ in collective moral communication they can create successful therapeutic alliances with their patients and their patients' families. Then, with collaborative and empathetic decision-making, they will make an increasingly crowded NICU a good place to live (Morrow, 2000).