Search

In her review of the health status and plight of children in the United States during the past few years, Barbara Starfield has focused on our nation's allocation of material resources to the care of sick children. She understands care to be the access to and the ministration of medical treatment, and the prevention of various physical and mental maladies regarding which children are at serious risk. Hence Starfield has tallied essential facts that reflect the extent of our nation's commitment to the care of sick children. She draws conclusions from her data like: "… children who clearly need more services because of their increased health problems are at a marked disadvantage in receiving them if public policy does not provide the means to help them" ([9], p. 6); furthermore, "It seems only fair that society now consider a major public policy initiative for children" ([9], p. 8). [ABSTRACT FROM AUTHOR]

At one time in our history, children were very important. Were it not for the labor they contributed, many families would not have risen above penury. To a considerable extent, we owe the success of our national growth over the first century of our nation to the children. We "rewarded" them with a system of public education that, with all of its problems, is still a model for most of the world [4]. [ABSTRACT FROM AUTHOR]

In ‘Loving the Chronically 111 Child: A Pediatrician's Perspective' [4], Thomas Irons exhorts his fellow physicians to rededicate themselves to the traditional but endangered values of service and love for their patients. These values are symbolized by and embodied in the house call, the healing touch, the soothing voice, and the listening ear, activities and skills central to the practice of an earlier generation of physicians. Irons identifies a number of major obstacles preventing today's physicians from achieving the ideals of service and love, including fragmentation in health care, limited access to care, paternalism, defensive medicine, retreat into science, and over-reliance on consultation. The latter four of these — paternalism, defensive medicine, retreat into science, and over-reliance on consultation — are described as attempts by the physician to avoid the vulnerability and pain which accompany identification with the patient and his suffering. I believe that physicians would do well to dedicate themselves to the ideals Irons has presented, and I agree that the obstacles he discusses seriously threaten the provision of compassionate care for chronically ill children. [ABSTRACT FROM AUTHOR]

The doctor-patient relationship has historically been viewed as the most important aspect of the practice of medicine. Indeed, in the preantibiotic era, medical training and practice often had little else to offer. The enormous scientific advances of this century, especially in the last three decades, however, have shifted that focus substantially. Likewise, there are few who would deny that the relationship is seriously threatened and needs our attention. [ABSTRACT FROM AUTHOR]

Myron Genel's explorations bring the idea of advocacy into question: What is it to be an advocate? In Roman times, "advocatus" was the term for a legal assistant or a councillor. It was derived from the Latin "advocare", to call or to summon one to a place, especially for council or aid. It also meant to avail oneself of someone, such as an assistant, witness, or counselor, in some cause. The formal and forensic valence of these usages is an ancient one. In English it continues to suggest a conflictual circumstance. As is conveyed by Genel's essay, advocacy intimates the intrusion of an authority into decisions by parents regarding their children. Under such circumstances, it is unlikely that there will be a single understanding of proper advocacy or of the authority of an advocate. [ABSTRACT FROM AUTHOR]

I have decided to address the role of the pediatrician as an advocate for children in the development of health and social policy. Since this is a very broad charge, and there are many other pediatricians who have labored long and valiantly as advocates for children, it would be presumptuous and misleading for me to attempt to represent them all. Suffice it to say that the efforts of these pediatricians in a variety of areas ranging from calling attention to the horrors of a nuclear holocaust to the eradication of dread diseases such as smallpox and polio would have to rank as among some of the most noteworthy in the past and at present. [ABSTRACT FROM AUTHOR]

This essay will be concerned with the question: must a good doctor also be a good person? More precisely, the question is: does the conception of what it takes to be a good doctor include as part of its meaning the requirement that he or she also be a morally good person? One can imagine asking the same sort of question about other roles or relationships: for example, does one need to be a morally good person to be a good friend, a good parent, a good child, a good judge, a good minister, or a good counselor? In the case of, say, a good chess player the answer would, of course, be NO. A person could be a good chess player but a thoroughly immoral person. As far as the others are concerned, the answer is more problematic. Such is the case of the good doctor. [ABSTRACT FROM AUTHOR]

Peter English's ‘"Not Miniature Men and Women‘: Abraham Jacobi's Vision of a New Medical Specialty a Century Ago" [1] provides important insights into the history of pediatrics. Using the writings and speeches of early pioneers in American pediatrics, he has described some of the arguments these leaders used to convince fellow physicians and the public of the need for a medical specialty whose sole concern was children. In recounting how early leaders in pediatrics demonstrated that children were not "miniature men and women," Dr. English necessarily covers a number of topics in a short space. He gives a very close-up view, from the perspective of the participants themselves. In this commentary, I will take a few steps back and survey more of the scene to gain a sense of how the arguments English presents fit into the larger picture of turn-of-the-century medicine and society. [ABSTRACT FROM AUTHOR]

It does not require special powers of observation to note when you move into the pediatric section of a hospital, clinic, or emergency room. Health providers have frequently abandoned ties and whites; they cover over their formal name tags with Smurf characters; and they decorate their instruments with attention-diverting animals. [ABSTRACT FROM AUTHOR]

Pediatrics is so thoroughly integrated into contemporary culture that it is hard to believe it only emerged as a medical specialty in the late nineteenth century. Until the eighteenth century, it was simply the women's task to attend to childbirth and to the care of young children. When women needed tha advice of an expert, they turned to the midwife for help. Perhaps, then, we ought to discuss the nurse, midwife and mother as paradigmatic pediatric professionals. But if we may be forgiven for limiting our field, we will consider the pediatrician as a representative for a number of pediatric health care specialties: nurses, social workers, and therapists. In this final section, then, we examine the growth of the specialty of pediatrics and inquire what special qualities may be important in taking care of the children. [ABSTRACT FROM AUTHOR]

William Ruddick leads us beyond a simple-minded appeal to the best interests of children in determining levels of treatment. Nothing ever happens to anyone only in terms of his best interests, nor should it. Treatment and care are provided to adults not just in terms of what would be best for them. Consideration is given as well, and correctly, to the financial, psychological, and social costs to others. Societies establish levels of treatment by also asking the question, how will particular policies of providing care affect the providers and those who pay for the care? Ruddick's "biographical" question for parents, "How will treatment affect our lives?", reminds us that families should be concerned about their own burdens as well. The best-interests standard as a single standard is unreasonable. It would suggest that choices about the best interests of children can be made apart from decisions regarding the best interests of their families and society. Taken in isolation, it would suggest that obligations to achieve the best interests of children are absolute and cannot be defeated by costs or by obligations to others. [ABSTRACT FROM AUTHOR]

To take decisive part in a child's medical care, parents must know what questions to ask physicians — and themselves. I wish to examine three questions often asked and answered in pediatric decisions, namely, (1)"What would I do if it were my child?" asked by physicians of themselves;(2)"What would you do if it were your child?" asked of physicians by parents of ill children;(3)"What is in the child's best interests?" asked by both physicians and parents. [ABSTRACT FROM AUTHOR]

Dan Brock argues persuasively that the general presumption of incompetence on the part of minors to decide about their medical care seems indefensible for children roughly above the age of 14 [1]. The presumption still exists and apparently remains strong in the law. But as Angela Holder points out [2], the courts are moving in the other direction. I am essentially in agreement with this, and find most of Brock's analysis of the notion of competence convincing. However, I am unconvinced that children at even earlier ages may not often have as much competence in this area as most adults. I stress this comparative judgment, because I think it is important that, in our concern for the well-being of children, we do not expect more from them than from adults in comparable situations. That having been said, I will argue that children nonetheless probably should not be given the authority to make such decisions, even though adults in similar situations should. That is, I will argue both that children have the necessary competence and that decisionmaking authority should not be extended to them. [ABSTRACT FROM AUTHOR]

What role should children play in decisionmaking about their health care?1 The doctrine of informed consent requires that medical treatment only be given to adults with their competent, informed and voluntary consent. The law, as well as common medical practice, presumes that adults are competent to decide about their medical treatment, though this presumption can be rebutted in particular instances. On the other hand, the law presumes that minors, who in most states are persons below the age of 18 years, are not competent to decide about their medical care; though with some exceptions to be noted below. For minors, the law generally holds that others, usually parents or guardians, are to decide for them about their medical treatment. The general presumption then in legal policy is that adults are entitled to decide about their medical care while children are not. However, medical practice, as we shall see, for good reason has often involved minors in decisionmaking about their care to a greater extent than the law seems to require. [ABSTRACT FROM AUTHOR]

The question of whether children should be given a role in decision-making concerning their own medical care is part of a broader question of how children should be treated in general. And for answering that we lack a clear and coherent framework. Falling as they do somewhere between adult humans and animals in terms of their capacities, but normally having from the moment of conception the potential to become adults, children constitute a category of living things unlike any other from the standpoint of the moral and conceptual problems their treatment raises. Improperly cared for, they tend to grow up incapable of relating normally and happily to other adults; overly cared for and kept dependent, they tend to grow up incapable of relating normally and happily to other adults. Few can agree what constitutes just the right kind and quality of care. [ABSTRACT FROM AUTHOR]

What limitations should be placed on the right of a specific child or adolescent to make decisions about his or her own health care? This is a continuing issue in the everyday practice of pediatrics [14] [17] [28] [30]. My friends who practice amubulatory pediatrics tell me that the number of adolescents who present themselves for treatment is increasing, they are becoming younger, and the situations in which they find themselves are more complicated. [ABSTRACT FROM AUTHOR]

Which children are capable of understanding certain information and making judgments for themselves? When are they old enough or in a condition to be emancipated from parental authority? Although children achieve full civil rights at the age of majority, it is, of course, a legal fiction that persons suddenly become fully mature on a particular birthday. Perhaps to remedy this, legislation and litigation have increasingly granted to older children rights to make decisions for themselves independently of their parents. Federal policies encourage even young children's assent or participation in consent for treatment and for research on the grounds that they are generally better off if they are informed about their illness and dealt with truthfully. [ABSTRACT FROM AUTHOR]

Gareth Matthews' paper [5] is a penetrating discussion of two closely related topics. In the first part of the paper, he offers a description and analysis of what he has called the "Standard Developmental Account" of children's conceptions of death. In the second part of the paper he focuses on an in-depth study of terminally ill children and compares its findings with the Standard Developmental Account. My commentary will explore the implications Matthews draws from these studies for the questions of whether and how to inform seriously ill children about their disease and help them participate in decisions about its treatment. [ABSTRACT FROM AUTHOR]

In her recent book, Conceptual Change in Childhood [2], Susan Carey reports that "there is a robust clinical literature on the child's understanding of death" ([2], p. 60). She says that in reviewing the literature published in English during the last 80 years, "A remarkably consistent picture emerges from this research. All authors agree on three periods in the child's emerging understanding of death" ([2], p. 60). [ABSTRACT FROM AUTHOR]

Why do children, especially those facing death, find consolation in E.B. White's novel Charlotte's Web? [12]. Anthropologist Bluebond-Langner confirmed a long-held belief among pediatric health professionals that dying children find this novel comforting. It is, she notes, their most popular book. "They always chose the chapter in which Charlotte dies, After any child died, the book had a resurgence of popularity among the others" ([2], p. 186). [ABSTRACT FROM AUTHOR]

An observation by an anthropologist studying the interactions of children in a hospital leukemia ward suggested the topic of this paper: the treatment of death in children's literature, with specific reference to children with life-threatening illness. In The Private Worlds of Dying Children, Myra Bluebond-Langner notes: The most popular book among these children [in a hospital ward with terminal leukemia] was Charlotte's Web. When Mary and Jeffrey reached stage 5 [the final stage of awareness of illness], it was the only book they would read. Several children at stage 5 asked for chapters of it to be read to them when they were dying. But as one parent stated, "They never chose the happy chapters.". They always chose the chapter in which Charlotte dies. After any child died, the book had a resurgence of popularity among the others ([1], p. 186). Recent psychological studies have revised our ideas of how children come to understand the concept of death, and their responses to it. We now know that young children have ideas and worries about death, even before they are old enough to verbalize them, and that fatally ill children have awareness even if they have not been told their diagnosis and never talk about it.1 Indeed, Bulebond-Langner cites the choice of Charlotte's Web as one indication of their non-verbal awareness. [ABSTRACT FROM AUTHOR]

Children, no less than adults, need emotional support and comfort in the face of serious illness or impending death. Professionals and families may, however, find it difficult to accept the fact of a child' critical or terminal illness or be reluctant to discuss it with the child. Some claim that withholding bad news will protect children from psychological harm; others argue that harm is more likely to result from keeping such information from them when they want it. Failing to communicate with children about what they need or want is likely to increase their feelings of isolation, fear, confusion, and mistrust. Even when information is withheld from them, older children and adolescents are likely to learn about their condition by overhearing others' conversations, observing changes in their care, or recognizing changes in their bodies. Although they recognize the difficulties, our authors conclude it is important to develop ways to communicate effectively with children and adolescents about their illnesses, to help them articulate their own conceptions of what illness means and to help them cope with events of serious illness in a way that affirms their personal worth. One technique for accomplishing these goals has focused on the use of children' literature. [ABSTRACT FROM AUTHOR]

When should research involving children as subjects be permitted? This difficult and pressing problem is often presented in the form of a dilemma: If we do research involving children as subjects, then we do so using individuals who cannot give informed consent. If we do not, then children as a group are denied many of the benefits of research including therapeutic advances, the possibility of good information about therapies, and the repudiation of dangerous and discredited therapies. Robert Levine shows how the U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (The National Commission) tried to find a morally defensible solution to the question of when children may be enrolled as subjects in research. They held that with appropriate review, safeguards, consent from guardians, and assent from the child, children may be enrolled if the study on balance holds out direct and appropriate benefit to them or if the study is not too risky. Levine served as a consultant to the National Commission and shows sympathy (which I share) for the solution proposed. [ABSTRACT FROM AUTHOR]

In 1975 the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (the National Commission) began its studies of the ethics and regulation of research involving children as subjects. In its report, Research Involving Children, published in 1977, the National Commission presented its recommendations for the ethical conduct of research involving children [22]. These recommendations formed the basis of federal regulations that were proposed in 1978 [21] and promulgated in final form in 1983 [19]. [ABSTRACT FROM AUTHOR]

The twentieth-century history of federal involvement in children's health affairs has followed an interesting pattern: from little concern to deep commitment and then to reluctant participation. Ann Wilson has shown how between 1906 and 1912 Theodore Roosevelt's administration prodded Congress to establish a Children's Bureau to determine children's and parents' medical and other needs; how Congress backed away from that commitment in the 1920s; how, during the Depression of the 1930s, President Franklin Roosevelt and Congress joined together to pass social legislation to help those in need, including children; and how the current Reagan administration, despite such actions as the "Baby Doe" regulations, has sought to reduce federal involvement in health care financing, Congress' wishes notwithstanding [5]. Though the three presidents mentioned — Theodore and Franklin Roosevelt, and Ronald Reagan — engineered these changes in government policy, they did not act in a vacuum. The general mood of the country, economic conditions, and political philosophy all played a role. To some extent, the medical profession also influenced public policy in this area. [ABSTRACT FROM AUTHOR]

In this paper I will examine the history of one way in which the federal government of the United States attempts "to promote the general Welfare" and "secure the Blessings of Liberty to ourselves and our Posterity", namely, through the provision of health care for children. My account will begin at the turn of the century when the idea of a Children's Bureau to gather data on the status of the nation's children was; first conceived. I will argue that, since that time, three themes are dominant in Congressional and public debate about federal responsibility for children's health care. They are: what is the authority of government to create legislation and policy affecting children's health; what are the economics of supporting health care for children; and whether health care for children should be a basic human right compelling its provision as a humane act of government. These are issues elected officials have faced and attempted to resolve as they have debated, voted on, and funded legislation for children's health care.1 [ABSTRACT FROM AUTHOR]

Chronically diseased or disabled children often have significantly fewer opportunities in life than their healthy counterparts. Thus, decisions such as how much money to spend on children's health care or whether to fund research projects on childhood diseases will have a direct effect on the lives of those children. Because prevention, treatment, and cure expand opportunities, we naturally want to provide them for our children, and perhaps we have some obligation to do so. The contributors to this section consider what it means to allocate an appropriate share of our resources, especially our health-care funds, to children. How do we decide when we have provided them proper access to the health care they need? [ABSTRACT FROM AUTHOR]

John Ladd's paper explores two important questions: What properly constitutes the principal aim of medicine and of the good doctor? Is there something about the medical care of patients, especially children, that requires special non-technical qualities? Frequently, answers to these questions focus on medical traditions. Ladd, however, turns to the domain of moral philosophy. I shall not iterate Ladd's analyses and conclusions, but merely discuss a few issues which, I hope, will stimulate further reflections. [ABSTRACT FROM AUTHOR]