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  1. Home
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  3. Pediatric Bioethics
  • Cited by 7
Publisher:
Cambridge University Press
Online publication date:
May 2010
Print publication year:
2009
Online ISBN:
9780511642388
DOI:
https://doi.org/10.1017/CBO9780511642388
Subjects:
Medicine, Ethics, Medical Law, Ethics and forensic Medicine, Philosophy
Information

Book description

This volume offers a theoretical and practical overview of the ethics of pediatric medicine. It serves as a fundamental handbook and resource for pediatricians, nurses, residents in training, graduate students, and practitioners of ethics and healthcare policy. Written by a team of leading experts, Pediatric Bioethics addresses those difficult ethical questions concerning the clinical and academic practice of pediatrics, including an approach to recognizing boundaries when confronted with issues such as end of life care, life-sustaining treatment, extreme prematurity, pharmacotherapy, and research. Thorny topics such as what constitutes best interests, personhood, or distributive justice and public health concerns such as immunization and newborn genetic screening are also addressed.

Reviews

‘A useful resource to be dipped in and out of for practitioners involved in the care of children from birth through to adolescent years.’

Source: Nursing Standard

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Contents

Contents
  • 1 - Virtues and Goals in Pediatrics
    pp 3-10
  • View abstract

    Summary

    In the development of virtue ethics, it was necessary to examine the connection between virtue and happiness. The concept of virtue as a normative theory for medical ethics paralleled the history of the concept of virtue in general ethics. To define the values at the core of medicine and to reach some consensus on the goals of medicine, a report was produced by an international project of the Hastings Center in which four goals for medicine were listed: the prevention of disease and injury and the promotion and maintenance of health; the relief of pain and suffering caused by maladies; the care and cure of those with a malady and the care of those who cannot be cured; the avoidance of premature death and the pursuit of a peaceful death. Gentle humor is a good antidote for a child's anxiety and even serves to alleviate the monotony of medical routine.
  • 2 - Contributions of Ethical Theory to Pediatric Ethics: Pediatricians and Parents as Co-fiduciaries of Pediatric Patients
    pp 11-21
  • View abstract

    Summary

    The core ethical concept of professional medical ethics is the ethical concept of the physician as fiduciary of the patient. This chapter shows that pediatricians have the fiduciary ethical obligation to protect and promote the health-related interests of children. It also shows that parents are in an ethically parallel relationship with their child when their child is a patient. Two giants of the modern period in the history of English-language medical ethics invented the ethical concept of the physician as fiduciary of the patient and invented medicine as a profession: the Scottish physician ethicist John Gregory and the English physician-ethicist Thomas Percival. As professional medical ethics, pediatric ethics rests on the conceptual foundations of three concepts: the pediatrician as fiduciary of the child who is a patient, parents as fiduciaries of the child who is a patient, and pediatricians and parents as co-fiduciaries of the child who is a patient.
  • 3 - Using the Best-Interests Standard in Treatment Decisions for Young Children
    pp 22-37
  • View abstract

    Summary

    The best-interests standard was introduced to undercut policies that children (and other incompetent persons) were property of their guardians and to give children's interests some weight. Judges, physicians, lawmakers, teachers, and others increasingly used it as a guide for making decisions for persons lacking decision-making capacity. The best-interests standard has been discussed frequently in the medical, legal, and bioethics literature, but it is given different meanings by different authors. The chapter argues that the best-interests standard should be adopted for persons of all ages for reasons of consistency, compassion, and justice and that there should not be one rule for infants and another for the rest of us. Unlike Child Abuse Protection and Treatment Act (CAPTA's) Baby Doe rules, the best-interests standard permits, within morally, legally, and socially sanctioned limits and established duties, the sort of compassionate and individualized medical decision making adults want for themselves.
  • 4 - The Moral and Legal Status of Children and Parents
    pp 38-53
  • View abstract

    Summary

    In conceptually outlining the moral controversy surrounding the status of children and parents and briefly tracing the historical evolution of the legal status of children, this chapter provides a foundation for considering the numerous, more specific pediatric bioethical controversies discussed in this book. The chapter starts with a discussion of some common intuitions about families that find expression in our developed social norms. The tension reflected in competing moral understandings of the proper relationship between parents and their children bubbles to the surface in modern American law. Transparent recognition of the problems we face in socially constructing the optimal relationship between children and their parents nowadays disguises a historical tendency in American law to grant tremendous deference to parents in almost all family matters. Almost all pediatric bioethical controversies taken to the courtroom nowadays turn on an intractable disagreement about how best to understand the posited harm to the child.
  • 5 - The Ethics of Pediatric Research
    pp 54-72
  • View abstract

    Summary

    Pediatric research ethics is based on respect for children and their best interests. The purpose of biomedical research is to contribute to knowledge, but this laudable goal may put children at risk of harm in clinical research, potentially stripping them of their rights and the respect they deserve. Pediatric research ethics relies on this respect, sometimes at the expense of knowledge that could benefit society. Pediatric medicine became thoroughly recognized in the 19th century, leading to the creation of pediatric hospitals. Two central figures in the pediatric research ethics debate included Paul Ramsey and Richard McCormick. The Common Rule instructs institutional review boards (IRBs) to ensure that the risks to subjects are minimized and that these risks carry reasonably equal weight in relation to the anticipated benefits. Knowledge gained from research must be obtained in a way that recognizes the vulnerability of children and respects their best interests.
  • 6 - Truth Telling in Pediatrics: What They Don't Know Might Hurt Them
    pp 73-86
  • View abstract

    Summary

    This chapter explores three issues providing challenges in the area of truth telling in pediatrics. First, whether it is the duty of pediatric practitioners, regardless of their professional discipline, to disclose information to patients who are children or adolescents, and to the parents of their patients, is not absolute; in pediatrics there is also a duty to respect parents' role in shaping the context of care and information provision. Second, challenges associated with truth telling often arise because practitioners and family members have different cultural backgrounds, and one's cultural background affects the importance one places on truth telling in the health care context. Third, parents' desire to withhold information about their child's impending death from that child is especially challenging for the child's health care providers. When children have a life-threatening illness or are dying, their vulnerability is great and the urge to protect them may be overwhelming.
  • 7 - Pediatric Ethics Committees
    pp 87-108
  • View abstract

    Summary

    Ethics committees have become nearly ubiquitous in American hospitals in the past quarter-century, and their use has been widely endorsed. This chapter provides the reader with an understanding of some ethical, social, and cultural issues at play in the operation of a pediatric ethics committee (PEC), as well as a practical guide to the formation and operation of such a committee. PEC serves as a resource for patients, families, staff, and community. The PEC members should be selected to maximize effectiveness in carrying out the committee's three main functions: case consultations, education, and policy development. The execution of each of these functions is discussed in the chapter. Membership on the PEC should be seen as an important service to the organization, and members who are hospital employees should be allotted sufficient time to participate.
  • 8 - Newborn Screening
    pp 111-124
  • View abstract

    Summary

    This chapter begins with a short discussion of the controversies surrounding the passage of mandatory phenylketonuria (PKU) screening. The paradigm shift from public health emergency to public health service would allow for the inclusion of conditions for which there is no known effective therapy and for the inclusion of conditions that present later in childhood. The chapter uses the case of newborn screening (NBS) for Duchenne muscular dystrophy as a case study. It discusses issues about storage of Guthrie cards and their use for research. The chapter examines the issue of informed consent for NBS and how this may be affected by whether the appropriate paradigm for NBS is a public health emergency or a public health service, whether screening identifies and discloses genetic carrier information, and whether samples can be used for nonclinical purposes.
  • 9 - Presymptomatic Genetic Testing in Children
    pp 125-140
  • View abstract

    Summary

    This chapter examines the arguments for and against predictive genetic testing of minors for late-onset disease for which there is no treatment or cure. Huntington disease (HD) is the most commonly inherited neurological disorder, with a prevalence ranging from 4.1 to 7.5 cases per 1,000,000 in Caucasians. It is inherited in an autosomal-dominant pattern such that each child of a parent affected with the disorder has a 50% chance of inheriting the HD mutation. In most studies, the effects of genetic testing for HD on psychological health have been assessed mainly in terms of depression and well-being. When other psychiatric symptoms are assessed, presymptomatic carriers complain more about sadness, low self-esteem, aggressive behavior, and compulsions than do non-carriers. Potential types of harm that might be caused by the genetic testing of a minor for late-onset conditions include the loss of future decision-making capacity and damage to the child's self-esteem.
  • 10 - Extreme Prematurity: Truth and Justice
    pp 141-148
  • View abstract

    Summary

    This chapter considers some of the ethical issues that surround the management of the extremely preterm infant (EPTI). Such infants are characterized by a gestational age (GA) of less than 28 weeks. The chapter addresses the interpretation of the neurodevelopmental outcomes and what the words "severe", "moderate", or "mild disability" mean to parents and health professionals if these words are not defined during counseling. The dangers of making false assumptions concerning outcome can also be seen when one examines the efficacy of active resuscitation of an EPTI in the delivery room. The longer an EPTI stays in the neonatal intensive care unit (NICU), the more likely it is that the infant will survive. In general, the principle of justice concerns fairness and rights and dictates that an EPTI be treated in the same way as other infants with treatable conditions.
  • 11 - Disorders of Sex Development
    pp 149-162
  • View abstract

    Summary

    This chapter explores ethical issues in the treatment of children who have disorders of sex development (DSD). For the past half-century, much of the medical literature on the treatment of children with DSD has focused on gender, including patient gender identity, gender role, and sexual orientation. Historically, in the pediatric care of children diagnosed with DSD, modern medical approaches have focused on attempting to produce an individual who is gender-typical in terms of physical appearance, self identity, and behavior, including sexual orientation. The multidisciplinary team as envisioned in the DSD consensus statement includes specialists in pediatric endocrinology, pediatric surgery or urology, psychology and/or psychiatry, gynecology, genetics, social work, and medical ethics. Hormone treatments necessary for the induction of puberty typically occur at a time when the child's maturity level allows her or him to participate in decision making, as facilitated by a behavioral health professional.
  • 12 - Rationality, Personhood, and Peter Singer on the Fate of Severely Impaired Infants
    pp 165-172
  • View abstract

    Summary

    Professor Peter Singer rejects the sanctity of a human life ethic when it insists on the moral impermissibility of abortion. This ethic also insists that hastening the death of infants and adults who persist in a vegetative state or whose condition is terminal is always morally impermissible. Singer takes a quality-of-life ethic in place of a sanctity-of-life ethic. In this chapter, the author contrasts his views with Singer by disputing that the concept of personhood is given by a denumerable set of attributes, especially ones that privilege cognitive capacities. He questions Singer coupling speciesism with questions concerning severe human impairments. The author further challenges the primacy of the impartialist ethics that guides Singer's project. Thinking, rational reflection, the high cognitive skills required even for rudimentary speech remain a part only of what it is to be human and what it means to participate in the highest value.
  • 13 - The Ethics of Controlling Reproduction in a Population with Mental Disabilities
    pp 173-185
  • View abstract

    Summary

    This chapter focuses on reproduction and contraception among people with a compromised capacity for decision making. While it is widely believed that the right to sexual expression is an important human right available no less to the disabled than to others, defining the contours of that right, and specifically categorizing who may or who may not be capable of exercising it, remain elusive tasks. The role of parents of the mentally disabled must be considered against this uncertain backdrop where paternalism and autonomy are in tension. The sexual behavior of minors, and related decisions about contraception, pregnancy, and childbirth, are features of the ongoing and vigorous debate about reproductive privacy. The chapter illustrates two cases, one involving extensive surgery and the other a tubal ligation where sterilizing operations have been a focal point.
  • 14 - Pediatric Innovative Surgery
    pp 186-202
  • View abstract

    Summary

    The slippery concept of innovation could be applied to all areas of medicine, but surgery has most frequently made use of the term. The rising demand for more ethically sound innovation in surgery from the surgical, the bioethical, and the lay arena appears to be an open invitation for increased and better applicable regulation of clinical surgical research. In general, risk assessment should involve the child and parents as decision makers and, when the innovative procedure is highly experimental, the insight of an institutional review board (IRB) as well. Achieving evidence-based surgery in the pediatric situation is even more complicated than in the adult arena, due to the increased research protections for children. There are several reasons that surgical innovations are continually introduced into practice outside the research realm and without prior formal scrutiny, and reimbursement is one of them.
  • 15 - Conjoined Twins
    pp 203-218
  • View abstract

    Summary

    Most types of conjoined twins appear to result from incomplete splitting of a single fertilized ovum, but some conformations termed "conjoined twinning" may involve a fusion of closely approximated embryos. The surgical, medical, and social challenges of separations speak to the need to provide thoughtfully integrated health care for conjoined twins and their families. When separation is considered, surgeons need to determine the extent and nature of the conjoinment, including whether there is a shared vascular circulation or shared organs. They also must determine the chances of success for either of the twins and assess their degree of certainty in the matter. This chapter presents two recent cases that demonstrate in more depth the complex ethical and legal arguments that can attend cases of separation in conjoined twins, namely the cases of the Ladan Bijani and Laleh Bijani, and the Michelangelo Attard and Rina Attard.
  • 16 - Ethics and Immunization
    pp 219-230
  • View abstract

    Summary

    The long-term effect on serious disorders such as liver cancer, caused by the hepatitis B virus, or cervical cancer, caused by the human papilloma virus (HPV), remains to be seen. Despite this clear medical success, vaccines have become the focus of considerable social and ethical controversy. More recently, the media and cultural wars over immunization have focused on the measles vaccine and/or the use of thimerosal and their alleged relationships to autistic behavior. Pediatric immunization programs undoubtedly stand as one of the most important U.S. public health initiatives of the 20th century. From a public policy perspective, states have clear legal authority to mandate vaccination, and such measures have succeeded in dramatically reducing the incidence of disease and complications from many important infectious agents. A successful childhood vaccination program must balance constitutionally protected parental liberties with social responsibility.
  • 17 - Psychotropic Drug Use in Children: The Case of Stimulants
    pp 231-244
  • View abstract

    Summary

    Rising rates of stimulant drug use among children have been accompanied by a vigorous social and ethical debate over the relative harm and benefits of psychotropic drugs for children. Stimulants such as Ritalin have been used to treat behavior problems in children since the 1950s. Contemporary attention deficit/hyperactivity disorder (ADHD) is part of an era of neurobiogeneticization of behavior in which stimulants must be seen as potential options and opportunities for children, parents, teachers, and clinicians. Pediatricians have an ethical responsibility to protect their patients from drug company influences and to refuse drug company involvement in their practice when this involvement could threaten their ability to provide treatment that is in the best interests of the child. Stimulant drug use among children for purposes of enhancement is very different than such use among consenting adults.
  • 18 - Brain Death, Minimal Consciousness, and Vegetative States in Children
    pp 247-261
  • View abstract

    Summary

    This chapter outlines the two means of determining biological death: one is cardiopulmonary, and the other neurological. It provides support for the continued use of the brain death concept based on operational usefulness and its moral rightness in that it can provide good in the absence of harm and, for most, in the absence of offense to intuition or moral sense. Brain death is the irreversible cessation of whole-brain function, which would be followed by the cessation of cardiopulmonary function without the institution of artificial measures. Recognition of the vegetative state (VS) entails a clinical diagnosis. The VS is likely to be permanent 12 months after traumatic brain injury and 3 months after nontraumatic injury in children. Minimally conscious state (MCS) is considered by some to be a neurological state whose recognition allows special legal and moral consideration. The interpretation of "minimal" becomes "hardly different from vegetative".
  • 19 - The Forgoing of Life-Sustaining Treatment for Children
    pp 262-284
  • View abstract

    Summary

    This chapter focuses on issues raised when one considers forgoing life-sustaining treatment for a child, a matter complicated by the fact that children are often unable to intelligibly and reliably speak for themselves. It addresses the ethical issues related to the consideration of forgoing life-sustaining treatment in children. The chapter explores how pathological conditions could potentially qualify for the cessation of life-sustaining treatment, and discusses when and how should this occur. Having set forth some of the ethical concerns about forgoing life-sustaining treatment for children, the chapter describes how expert professional panels in pediatrics and bioethics have approached the issues in three English-speaking countries (the United States, Canada, and the United Kingdom). The chapter ends with a sampling of laws and legal decisions from several English-speaking jurisdictions. Moral value judgment is inescapable in this arena, and one must ultimately come to recognize one's own final commitments in any given case.

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