Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants

Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants

Ethical issues • The treatment of impaired infants raises ethical questions common to other bioethical issues such as abortion and euthanasia but also specific to the conditions of such infants themselves. • The severe under-development of low-birth-weight babies puts them at high risk for developing serious physical and mental problems later in life. Some facts about such infants are summarized below. • The basic moral question about extremely low-birth-weight infants is whether they ought to be treated at all or, if they are already being treated, whether that treatment should continue.

Ethical issues • On the one hand, are those who regard the treatment of all infants as a moral obligation because they have a right to life in the same way as an adult human being. The fact that these infants might develop severe problems later, for themselves orothers, is simply irrelevant. • All means necessary should be used to keep such infants alive. Those who take this perspective will typically be opposed to abortion and euthanasia on similar grounds.

Ethical issues • On the other hand, others believe that the great likelihood of serious later physical and mental problems provide compelling reasons to withhold or minimize extraordinary efforts to keep such children alive. • On this view, the potential quality of life of the child is a crucial factor in deciding whether such effort should be made. • Additionally, resources devoted to such children are resources that cannot be used to help others. How should the choice be made?

Ethical issues • One of the factors that make impaired infants an ethically unique situation is the fact that the children themselves cannot be asked what they would want. Indeed, depending on the impairment, they may never reach a level of competence which would allow them to make such a decision. • In the case of adults, whether a patient should be treated or not, is today recognized as a question which the patient, himself, should answer if he is competent.

Ethical issues • But, since the impaired infant cannot make this decision, someone else, physicians, parents, or the state must do so. • Further, what criteria should be used in making the decision whoever is determined to be the appropriate authority?

Ethical issues • The two issues intertwine. In the case of euthanasia of adults in severe pain or at the end of life, they have lived long enough to develop preferences, which others might know about. Such preference could be part of a decision by the patient or others to end life. • But, in the case of an impaired infant, such preferences do not exist because there was no time for them to develop. In such cases, assumptions must be made by others. Indeed, some raise the question whether we can say the infant is even a person. • One approach, appealing to the “best interests of the child” tries to assess what will best benefit the child given the state of its development. But what constitutes “best interests” and is there a disinterested way of answering this question?

Facts about impaired infants • Every year, more than 400,000 babies are born at least six weeks prematurely and about 62,000 of them weigh less than 1600 grams (about 3.5 pounds). • In the United States, more than a thousand preterm babies are born each day, and from 1990 to 2006 (the latest figures, published in 2010), the preterm birthrate increased by 20 percent. • About 13 percent of all births in the U.S. are preterm.

Facts about impaired infants • Thanks to the development of new procedures and the use of new drugs, almost 85% of premature infants live long enough to leave the hospital (though many must return), but only about 20% have no lasting major physical or mental impairment. • The more premature an infant and the lower the birth weight, the more likely it is that the infant will die soon after birth or be severely physically and mentally impaired.

Facts about impaired infants • About half of premature infants in the 500- to 750-gram (1- to 1.5-pound) range fail to survive. From 25 to 33 percent of babies under 750 grams have irreversible neurological damage. • The figure rises to between 40 and 50 percent for those with a birth weight between 500 and 600 grams. About 5 to 10 percent of these very low-birth-weight babies will have cerebral palsy, and a similar percentage will have IQs below 70, where 100 is average.

Facts about impaired infants • Survival rate is closely connected with gestation time. The technological limit for preserving the lives of premature infants is about twenty-three to twenty-four weeks. • Estimates of an infant’s developmental stage may be off by a week or so because it’s impossible to be certain when conception took place.

Facts about impaired infants • Premature girls have about a one-week developmental advantage over boys, and black infants have the same advantage over white infants. Thus, a white boy may be about two weeks behind in development compared with a black girl. • Premature babies have not spent enough time in the uterus, and as a result, they are physiologically underdeveloped. The more premature the infant, the more underdeveloped it is. Birth weight, generally, is an index of developmental prematurity.

Facts about impaired infants • Extremely premature neonates are “fetal infants” that have spent hardly more than half of the forty-week gestation period in their mother’s uterus. • Extremely premature infants are liable to life-threatening disorders. Many have problems eating, digesting food, and absorbing nutrients.

Facts about impaired infants • Their lungs are small and brittle and fill up with secretions, making it impossible for them to breathe normally. They must be put on a mechanical ventilator, and they tend to suffer from respiratory infections. • Poor prenatal development also makes smaller infants prone to cerebral hemorrhages, or “brain bleeds,” that can result in a variety of devastating consequences. Infants that have had brain bleeds are prone to seizure disorders, blindness, low vision, deafness, mental retardation, and various more subtle mental difficulties that may show up only years later.

Section 1: The Groningen Protocol • The focus of the protocol is on proposed guidelines for determining when active infant euthanasia is justified. • But, just as important, is the context which gave rise to its formulation. Active infant euthanasia is illegal in most, if not all, countries of the world. This means that doctors who practice it are subject to criminal prosecution.

Section 1: The Groningen Protocol • Should this be? • Is it reasonable to put the euthanizing of an infant, like BenteHindriks (discussed on page 506) who was in intractable pain and bound to die, in the same moral category as someone who has deliberately committed homicide? • Answering the question of how impaired infants ought to be treated is relevant to answering this question as well. The fortunesof well-meaning physicians are on the line as well as impaired infants.

Reading: The Groningen Protocol: The Why and the WhatJames Lemuel Smith • The author describes the problem faced by Dutch pediatrician Eduard Verhagen of dealing with infants who have a hopeless prognosis and intractable pain. • Smith then presents the scheme for classifying infants with serious medical problems into three categories and the five conditions for legitimizing active infant euthanasia that make up the Groningen Protocol as developed by Verhagen and his collaborator Pieter Sauer.

Section 2: The Ashley Treatment • The Case of Ashley explores a set of ethical issues parallel to those raised by premature infants. Though born normally, Ashleybegan to develop in many of the abnormal ways that commonly result from premature birth. • The Ashley case raises the question of what criteria should be used to make decisions about problems that arise as impaired children grow. • For example, as Ashley matured, she would begin to menstruate. Should this be allowed to occur normally or, given her impaired condition, was it reasonable, as her parents believed, to intervene and prevent the menstrual cycle from occurring to spare her the discomforts, which can accompany it? • This first article describes the parents view of physical treatments of Ashley which they thought justified. The second offers a detailed analysis of ethical issues raised by the Ashley treatment, casting doubt on some of the parents’ decisions.

Reading: The “Ashley Treatment”Ashley’s Mom and Dad • The young girl known only as Ashley had an apparently normal birth, but she appears to have suffered damage to her brain from an unknown cause. • Her mental and motor faculties have failed to develop, and as a result, she is completely dependent on others for her care. • Although the growth of her body was proceeding along a normal developmental path, her mental and motor functions would never improve. • Her parents, who identify themselves only as “Ashley’s Mom and Dad,” argue on their blog about their daughter that the medical procedures they requested on the behalf of Ashley when she was nine (“the Ashley treatment”) were all intended to improve the quality of her life, not that of their own as caretakers.

Reading: The “Ashley Treatment”Ashley’s Mom and Dad • With or without the treatment, the parents claim, their intention has always been to keep Ashley at home. The growth attenuation by hormone injections will keep her small enough to ensure that she is frequently moved to be with the other family members and the surgery to remove her uterus and breast buds will prevent menstrual cramps and the breast discomfort caused by lying down most of the time. • The surgeries, including a preventive appendectomy, will also spare Ashley the dangers of breast and uterine cancer and unrecognized appendicitis. The Ashley treatment, her parents argue, is in her best interest and will improve the quality of her life.

Reading: The Ashley Treatment: Best Interests, Convenience, and Parental Decision-MakingS. Matthew Liao, Julian Savulescu, and Mark Sheehan • The authors argue that although growth attenuation in a severely disabled child like Ashley may be justifiable, hysterectomy and the surgical removal of breast buds are not. • Small size could be in Ashley’s best interest, permitting her family to care for her at home. If the attenuation also promotes the interest of her parents, that should not count against it. • Moral obligations do not typically require large sacrifices of health and all others interests and duties. The benefit to Ashley of the removal of her uterus and breast buds, by contrast, is not as clear, and harms are more likely.

Reading: The Ashley Treatment: Best Interests, Convenience, and Parental Decision-MakingS. Matthew Liao, Julian Savulescu, and Mark Sheeh • Less invasive ways of protecting against cramps and the discomforts of having breasts might be found, and the risks of cancer and sexual abuse seem too unlikely to justify surgery. • The authors also reject the argument that an immature body is more in keeping with Ashley’s mental age and will give her greater dignity. • Finally, the authors encourage us to see that the right to be loved and cared for that Ashley shares with other children, disabled people, and the elderly should be recognized by society and supported by every able person by paying taxes and voting for policies that help parents and other caregivers.

Section 3: The Status of Impaired Infants • The papers in this section raise an issue that is common to several other bioethical concerns: whether impaired infants are “persons”, that is, entities which deserve the same rights as adult humans, in particular, the right to life. • The “right to life” debate is systematically explored in the readings in the chapter on Abortion (chapter 5).

Reading: Examination of Arguments in Favor of Withholding Ordinary Medical Care from Defective InfantsJohn A. Robertson • John Robertson defends a conservative natural law position in criticizing two arguments in favor of withholding “necessary but ordinary” medical care from impaired infants. • He rejects the claim made by Michael Tooley that infants are not persons and argues that, on the contrary, there is no non-arbitrary consideration that requires us to protect the past realization of conceptual capability but not its potential realization.

Reading: Examination of Arguments in Favor of Withholding Ordinary Medical Care from Defective InfantsJohn A. Robertson • The second argument that Robertson considers is one to the effect that we have no obligation to treat defective newborns when the cost of doing so greatly outweighs the benefits (a utilitarian argument). • In criticism, Robertson claims that we have no way of judging this. Life itself may be of sufficient worth to an impaired person to offset his or her suffering, and the suffering and cost to society are not sufficient to justify withholding care.

Reading: Ethical Issues in Aiding the Death of Young ChildrenH. TristramEngelhardt, Jr. • The author contends that children are not persons in the full sense. • They must exist in and through their families. Thus, parents, in conference with a physician who provides information, are the appropriate ones to decide whether to treat an impaired newborn when • there is not only little likelihood of a full human life but also the likelihood of suffering if the life is prolonged or (2) the cost of prolonging the life is very great.

Reading: Ethical Issues in Aiding the Death of Young ChildrenH. TristramEngelhardt, Jr. • Engelhardt further argues that it is reasonable to speak of a duty not to treat an impaired infant when this will only prolong a painful life or would only lead to a painful death. • He bases his claim on the legal notion of a “wrongful life.” This notion suggests that there are cases in which nonexistence would be better than existence under the conditions in which a person must live. • Life can thus be seen as an injury, rather than as a gift.

Right to Life of the HandicappedAlison Davis • Davis argues, from her experience as a handicapped person, against allowing doctors, within the first 28 days of the life of a severely disabled infant, to predict the infant’s quality of life and decide the course of treatment on the basis. • Davis points out that the prediction for her would have been a life without worthwhile quality, a prediction wholly at odds with her own experience of life. • She rejects the notion of non-personhood during the first four weeks of life and expresses the fear that following predictions made during that period to justify non-treatment would lead to the decriminalization of killing handicapped people at later ages.

Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants