New York, NY, April 11, 2011 How do we assess the current and future quality of life (QoL) for infants and children with life-threatening conditions? In the April issue of Current Problems in Pediatric and Adolescent Health Care, "The Quality of Life of Young Children and Infants with Chronic Medical Problems," presents a collection of essays in which physicians, medical ethicists, parents, and caregivers address one of the most contentious topics in pediatric and clinical ethics today, the assessment of QoL). They share their professional and personal experiences and knowledge about this complex topic.
Writing in the foreword, John D. Lantos, MD, Director, Children's Mercy Bioethics Center, states that "any assessment of quality of life necessarily incorporates value judgments about the subjective state of another human being. The stakes go up when such judgments are used to deny people access to medical care, or to justify the withholding or withdrawing life-sustaining treatment. Before making such significant decisions, we need to be clear about what, exactly, we are talking about and why we talk about it the way we do."
The lead essay by neonatologists Antoine Payot, MD, PhD, and Keith J. Barrington, MB, ChB, University of Montreal suggests that quality-of-life assessments require an understanding of the complex relationship between objective measures of function or emotion and subjective reports of one's satisfaction with those feelings or capabilities. Then, one must apply those subjective and objective measures to different interpretations of what it means to be healthy or sick, well-functioning or disabled. They review the growing body of literature about quality of life that has developed over the past few decades.
Guest Editor Annie Janvier, MD, PhD, neonatologist and clinical ethicist working at Sainte-Justine Hospital in Quebec, describes the task of assembling 12 highly personal and moving accounts of parents who
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