Contents

List of contributors, viii

Preface, xi

 Introduction, 1

 PART I - Therapeutic misalliances

1.1 Unconventional medicine in the pediatric intensive care unit, 13

-Chester J. Randle Jr.

1.2 Role responsability in pediatrics: appeasing or transforming parental demands?, 21

-Richard B. Miller

1.3 Topical discussion, 30

2.1 The extremely premature infant as the crossroads, 34

-Ronald Cohen and Eugene Kim

2.2 The extremely premature infant at the crossroads: ethical and legal considerations, 37

-Simon N. Whitney

2.3 Topical discussion, 52

3.1 Munchausen syndrome by proxy, 55

-Manuel Garcia-Careaga and John A. Kerner Jr.

3.2 Some conceptual and ethical issues in Munchausen syndrome by proxy, 67

-Frances M. Kamm

3.3 Topical discussion, 80

PARTE II - Medical futility

4.1 Letting go: a study in pediatric life-and-death decision making, 89

-Lawrence H. Mathers

4.2 Near-drowing, futility, and the limits of shared decision making, 95

-Simon N. Whitney

 4.3 Topical discussion

 5.1 Long-term ventilation in a child with severe central nervous system impairment, 113

-Ronald M. Perkin, Robert Orr, and Stephen Ashwal

5.2 Autonomy, community, and futility: moral paradigms for the long-term ventilation of a severely impaired child

-Anita Silvers

5.3 Topical discussion

6.1 Complexities in the management of a brain-dead child, 135

-Lorry R. Frankel and Chester J. Randle Jr.

6.2 The moral arena in the management of a brain-dead child, 140

-Amnon Goldworth

6.3 Topical discussion, 148

PART III - Life by any means

7.1 Where should a child die?, 157

-Roger Burne

7.2 Where should a child (in the USA) die?, 162

-William A. Silverman

7.3 Topical discussion, 166

8.1 Infant heart transplantation and hypoplastic left heart syndrome: what are the ethical issues?, 170

-Clifford Chin

8.2 Infant heart transplantation and hypoplastic left heart syndrome: a response, 177

-Joel E. Frader

8.3 Topical discussion, 185

9.1 Liver and intestinal transplantation, 190

-Manuel Garcia-Careaga, Ricardo Orlando Castillo, and John A. Kerner Jr.

9.2 Tranplantation and adolescentes, 196

-Rosamond Rhodes

9.3 Topical discussion, 212

PART IV - Institucional impediments to ethical action

10.1 Ethical problems encountered with oncology and bone marrow transplant patients, 221

-Lorry R. Frankel and Joseph V. DiCarlo

 10.2 Ethics in the pediatric intensive care unit: oncology and bone marrow transplant patients, 229

-Linda Granowetter

10.3 Topical discussion, 236

11.1 Nursing perspectives on withholding food and fluids in pediatrics, 239

-Joy Penticuff

11.2 Ethics and clinical decision making: withholding food and information, 246

-Mary V. Rorty

11.3 Topical discussion, 253

12.1 Ethics and managed care, 257

-Douglas S. Diekema

12.2 Challenging fidelity: the physician's role in rationing, 267

-Nancy S. Jecker

12.3 Topical discussion, 277

References, 282

Index, 296