Children, Ethics, and Modern Medicine

Cover

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Contents

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pp. \-

Acknowledgments

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pp. xi-xiii

The remotest origin of this book dates to my childhood in the early 1960s, when I was admitted to a hospital in Hawaii to undergo a traumatic diagnosis for a possible heart tumor. No less now than at the age of nine, I believe that adults’ care of children involves special virtues and duties, many of which were lacking in my experience as a pediatric patient and research..."

Introduction

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pp. 1-12

"This is a book about medical ethics and the care of children, focusing on parental and professional responsibilities toward patients who are young and ill. Two controversies from my home in southern Indiana—one well known, the other less so—help to focus ideas. In 1982, the case of Baby Doe brought national attention to Bloomington when parents refused life-saving surgery for their baby, born with Down syndrome, to correct his..."

1. Parental Responsibility in Fear and Trembling

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pp. 15-24

When Adrienne St. Jacques left her home in Lucian Heights one clear, cold January morning, the easier part of her day was over. She had dressed and fed two of her children and sent them off to school. Her husband, Michael, was out the door and heading for work, not to return until after dinner. Adrienne’s thoughts about a job for herself would have to be put aside, at least for the time being. She would inquire about the listing..."

2. The Duty to Care

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pp. 25-50

"Why should Abraham care for Isaac? Why should Adrienne care for Jean? Why should we care about the fates of these (and other) parents, or accept their claims to care for their dependent minors? In pediatrics, health care providers face similar questions: Why should medical professionals care about the welfare of families and children? Assuming that there is a basis for care, how should that care obligate parents who are..."

3. Pediatric Paternalism

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pp. 51-83

"I began the last chapter by focusing on the category of responsibility as providing the framework for understanding adults’ duties and virtues and their connection to children’s rights. In addition to defending children’s basic rights, I argued that the idea of responsibility extends beyond those rights to acts and dispositions that define a broader basis for encumbering adults with the duty to care for children."

4. Representing Patients

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pp. 84-117

Thus far, I have argued that the category of responsibility generates a more comprehensive framework for thinking about the morality of pediatric care than the idea of children’s rights. Without wishing to weaken a commitment to children’s rights, I have focused on the virtues and duties of professionals and families who form a therapeutic alliance on behalf of a child in need. A central feature of medical care understood in this way is the..."

5. Basic Interests

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pp. 119-145

"While visiting a children’s hospital in the Northeast, I encountered an intriguing sculpture of sorts, half art and half science, housed in a large glass encasement. Named Perpetual Motion, the sculpture is a colorful contraption of metal, wood, rubber, and plastic. Mechanical activity begins in one corner, where a machine driven pulley lifts brightly colored balls, one at a time, to the top of the sculpture and propels them down a..."

6. A Fighter, Doing God’s Will: Technologically Tethered, Retaining Fluids, on Steroids, Sedated, and Four Years Old

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pp. 149-163

"It is commonly thought that health care providers experience their patients’ deaths as a failure, a defeat in the battle to provide health and life. Seeking to inform the healer’s art, William F. May writes of the metaphoric parallels between medicine and war..."

7. Respecting Jackson Bales’s Religious Refusal: On What Grounds?

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pp. 164-180

"I noted in Chapter 4 that one challenge in pediatrics is to calibrate expectations of patients’ decision-making authority to their age and maturity. I argued for drawing the line earlier than the age of eighteen when presuming competence of adolescents and said that care should be adjusted to honor the primary good of respect when appropriate. We do well to recall that mediated beneficence means acknowledging the laws of nature and..."

8. Ericka’s Sepsis, Lia’s Convulsions, and Cultural Differences

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pp. 181-202

"Several of Billy Richardson’s and Jackson Bales’s care providers at Baylinasked themselves whether to cease aggressive medical treatment (Billy)...or to introduce standard therapy (Jackson) against the wishes of each patient’s family. Those conflicts might conceal a more fundamental level of agreement between the intensive care unit (ICU) house staff and each patient’s family regarding the value of conventional medical care."

9. (Properly) Marginalized Altruism: Screening Organ Donations from Strangers

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pp. 203-219

"In the previous three chapters, I focused on cases that pit patients and their families against medical professionals in situations of moral and political disagreement. Viewing medical cases in that way can be deceptive, however, for it might obscure the extent to which moral controversies are mediated by impersonal institutional arrangements. Given the tradition of individualism in the United States, Americans are prone to focus on individuals and the conflicts that divide them, ignoring ways in which interpersonal..."

10. The Politics and Ethics of a Hospital Ethics Committee

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pp. 220-237

"Discussions at Baylin about whether to accept organ donations from strangers involved a case consult that never expanded into a proposal for a formal policy requiring the hospital administration’s approval. Guidelines for screening donors were circulated to a working group of ethicists and surgeons for feedback, but nothing official came of those conversations. That process contrasts with the work of crafting ethical policy, for..."

11. Ethical Issues in Pediatric Research

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pp. 238-267

"I noted in the last chapter that one function of an ethics committee is to educate hospital staff about moral and legal standards in biomedicine—to function as a school of sorts—especially in response to new developments in science, culture, and technology. To that end, Baylin’s Ethics Advisory Committee (EAC) convenes a retreat each spring to orient new members, to thank members who are rotating off their three-year term,..."

Conclusion: On Liberal Care

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pp. 268-274

"In Parts I and II of this book, I sought to draw broad contours of pediatric bioethics (Moralit�t ) as a framework for considering specific issues and experiences in the medical culture of pediatric care (Sittlichkeit ). Although Part I emphasized an ethics-distant orientation and Part II anethics-near orientation to medical ethics, I sought to keep both orientations in focus in proceeding from theory to culture, from contours to cases."

Notes

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pp. 275-299

Index

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pp. 301-305