Preface

Albert R. Jonsen—a gentle, compassionate, superbly educated former priest and perhaps the first clinical ethics consultant ever—had just helped two young parents and the neonatology staff at Moffitt Hospital reach a painful decision. He had guided them to the sad, inescapable conclusion that life support could not keep the parents’ premature, multiply handicapped newborn alive. The baby was inexorably dying. The parents and the staff reluctantly decided to stop life support and allow the baby to die. I was a fully trained internist and brand-new bioethics fellow of Professor Jonsen’s at the time. I had heard about the baby’s predicament and observed from afar Professor Jonsen’s ethics consultation about it. I naturally believed (as any clinically focused doctor would) that his consultative responsibilities in the case had ended with the decision to stop all but comfort care. I happened to notice Professor Jonsen in his office the day after the formal consultation. He appeared weary and subdued. I asked whether he felt ill. He said, No, he had just returned from visiting this baby’s parents again. Naively surprised, I asked why. He replied that, although he had served as the ethics consultant, not the hospital chaplain in the case, he had sensed something of a therapeutic relationship between himself and the parents. He, therefore, had felt a pastoral duty to see them through the ordeal of the baby’s death. His reply challenged me to step out of the narrow, strictly rational perspectives of both scientific medicine and academic ethics. Over the subsequent months of my bioethics fellowship, I began to see the importance of health professionals’ recognizing and somehow addressing the spiritual dimension of illness. Later experiences as a missionary doctor in Africa and as a clinical ethics consultant in my own right back in the USA confirmed that impression and extended it to the psychological, social, and cultural dimensions of illness, too. I came to believe that every illness has multiple important dimensions, not just the bioscientific, and they all deserve attention. Healthcare professionals who care for dying patients have an especially important responsibility to see the nonbioscientific dimensions of terminal illness addressed. That idea, of course, is not new. The modern hospice movement has