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Ethical dilemmas in paediatrics
Media Watch
Ethical dilemmas in paediatrics
Ethical Dilemmas in Pediatrics: Cases and Commentaries Lorry Frankel, Amnon Goldworth, Mary Rorty, William Silverman (Eds) Cambridge University Press, 2005 £45·00 (US$81·60, €65·85), pp 303 ISBN 13 978 0521 84744 5
Management of critically ill children can give rise to ethical dilemmas. In situations that demand a firm decision, the scenario becomes more challenging—particularly when physicians from several disciplines are caring for the patient, when informed consent has to be obtained from parents, or when doctors have to start aggressive treatment with limited benefits. Ethical Dilemmas in Pediatrics highlights such dilemmas in paediatric practice and in high-tech hospital care. Although the book is meant for general paediatric practice, it discusses ethical issues in oncology. For example, a case is presented in which a mother repeatedly refused to give consent for limitation of intervention and a do-notresuscitate order should her 9-year-old daughter go into respiratory failure and sepsis after recurrent acute lymphoblastic leukaemia. The mother consents for her daughter to have experimental treatment with nitric oxide, but the patient does not respond satisfactorily and dies. Interestingly, the patient’s oncologists supported all decisions taken by the mother: because the cancer had been under control, they believed aggressive intensive-care-unit support, including experimental treatment, was needed. This situation highlights a scenario of conflicts that can develop between
oncologists and physicians in the intensive care unit. The oncologists’ reluctance to accept a poor outlook for this girl was blamed for strengthening the mother’s perception that more could be done. The authors suggest a way to address this kind of ethical dilemma: “We have found the use of multidisciplinary conferences helpful to all the caregivers involved with the patient. They provide the family with an opportunity to meet with all the physicians at one time to obtain their input regarding medical management. This is seen as an attempt by the treating physicians to cooperate and to do what is best for the child”. The descriptions by physicians are accompanied by detailed commentaries by bioethicists. Although some discussions seem too long, the language is lucid and understandable. Ethical questions are answered with simple but authoritative explanations. Topics such as the do-not-resuscitate order, informed consent, and a triage approach are discussed. The book is a must read for medical students, junior doctors, paediatricians, and oncologists.
*Sumana Kanjilal, Manjulika Das [email protected]
Quality of life?
Assessing Quality of Life in Clinical Trials: Methods and Practice Peter Fayers and Ron Hays (Eds) Oxford University Press, 2005 US$75·00 (£41·35, €60·50), pp 467 ISBN 0 19 852769 1
648
The use of quality-of-life (QOL) endpoints in clinical trials has increased substantially in the past decade, partly on the basis of the development of QOL science. As such, it seems appropriate that a second edition of a widely used 1998 text on this topic has been published. The editors of Assessing Quality of Life in Clinical Trials: Methods and Practice both have long and accomplished careers in QOL research. This book has 27 chapters, and an international cast of distinguished multidisciplinary authors—13 from the USA, 14 from Europe, two from Canada, and one from Australia— who provide wide-ranging coverage of topics related to QOL assessment. The book includes updated reviews of several topics in QOL assessment: psychometric techniques, data analysis, data interpretation, and preference-based measures. Many chapters are well written, up to date, and provide the reader with a state-of-the-art guide to QOL research. New themes in the book include qualitative research, with a discussion of how to develop questionnaires, use focus groups, and apply cognitive interviewing during pretesting to understand the meaning and interpretation of QOL questions from the patient’s perspective. Such procedures have rarely been documented in detail. The qualitative theme is echoed in a chapter reviewing individualised QOL measures—ie, those that incorporate values and priorities of the patient. This chapter reviews the questionnaires available, and suggests ways in which they could be used in clinical trials and practice.
Another theme that emerges in several chapters is itemresponse theory, possibly the most important topic in QOL research at present. Item-response theory offers the potential for questionnaires to be tailored individually to the characteristics of the individual respondent, and administered by computer, thus obviating the need to choose from competing QOL questionnaires and facilitating comparison of QOL outcomes across studies and populations. Although these chapters might be challenging reading for a novice, they are worth pursuing because this topic will only become more important in coming years. This book should be an essential addition to the bookshelf of researchers interested in QOL research; it should be noted for its breadth and readability. The only disappointment was the brief discussions about future directions in many chapters, and the absence of a chapter by the editors summarising what they see as the major accomplishments of QOL research during the past decade, the challenges ahead, and priorities for moving forward. Fayers and Hays are eminently qualified to write such a chapter, and their perspectives would have enriched the book. Nonetheless, this book is very timely, and experts and those new to the subject will find it offers something of interest.
Carolyn Gotay [email protected]
http://oncology.thelancet.com Vol 6 September 2005
Ethical dilemmas in paediatrics
Ethical Dilemmas in Pediatrics: Cases and Commentaries Lorry Frankel, Amnon Goldworth, Mary Rorty, William Silverman (Eds) Cambridge University Press, 2005 £45·00 (US$81·60, €65·85), pp 303 ISBN 13 978 0521 84744 5
Management of critically ill children can give rise to ethical dilemmas. In situations that demand a firm decision, the scenario becomes more challenging—particularly when physicians from several disciplines are caring for the patient, when informed consent has to be obtained from parents, or when doctors have to start aggressive treatment with limited benefits. Ethical Dilemmas in Pediatrics highlights such dilemmas in paediatric practice and in high-tech hospital care. Although the book is meant for general paediatric practice, it discusses ethical issues in oncology. For example, a case is presented in which a mother repeatedly refused to give consent for limitation of intervention and a do-notresuscitate order should her 9-year-old daughter go into respiratory failure and sepsis after recurrent acute lymphoblastic leukaemia. The mother consents for her daughter to have experimental treatment with nitric oxide, but the patient does not respond satisfactorily and dies. Interestingly, the patient’s oncologists supported all decisions taken by the mother: because the cancer had been under control, they believed aggressive intensive-care-unit support, including experimental treatment, was needed. This situation highlights a scenario of conflicts that can develop between
oncologists and physicians in the intensive care unit. The oncologists’ reluctance to accept a poor outlook for this girl was blamed for strengthening the mother’s perception that more could be done. The authors suggest a way to address this kind of ethical dilemma: “We have found the use of multidisciplinary conferences helpful to all the caregivers involved with the patient. They provide the family with an opportunity to meet with all the physicians at one time to obtain their input regarding medical management. This is seen as an attempt by the treating physicians to cooperate and to do what is best for the child”. The descriptions by physicians are accompanied by detailed commentaries by bioethicists. Although some discussions seem too long, the language is lucid and understandable. Ethical questions are answered with simple but authoritative explanations. Topics such as the do-not-resuscitate order, informed consent, and a triage approach are discussed. The book is a must read for medical students, junior doctors, paediatricians, and oncologists.
*Sumana Kanjilal, Manjulika Das [email protected]
Quality of life?
Assessing Quality of Life in Clinical Trials: Methods and Practice Peter Fayers and Ron Hays (Eds) Oxford University Press, 2005 US$75·00 (£41·35, €60·50), pp 467 ISBN 0 19 852769 1
648
The use of quality-of-life (QOL) endpoints in clinical trials has increased substantially in the past decade, partly on the basis of the development of QOL science. As such, it seems appropriate that a second edition of a widely used 1998 text on this topic has been published. The editors of Assessing Quality of Life in Clinical Trials: Methods and Practice both have long and accomplished careers in QOL research. This book has 27 chapters, and an international cast of distinguished multidisciplinary authors—13 from the USA, 14 from Europe, two from Canada, and one from Australia— who provide wide-ranging coverage of topics related to QOL assessment. The book includes updated reviews of several topics in QOL assessment: psychometric techniques, data analysis, data interpretation, and preference-based measures. Many chapters are well written, up to date, and provide the reader with a state-of-the-art guide to QOL research. New themes in the book include qualitative research, with a discussion of how to develop questionnaires, use focus groups, and apply cognitive interviewing during pretesting to understand the meaning and interpretation of QOL questions from the patient’s perspective. Such procedures have rarely been documented in detail. The qualitative theme is echoed in a chapter reviewing individualised QOL measures—ie, those that incorporate values and priorities of the patient. This chapter reviews the questionnaires available, and suggests ways in which they could be used in clinical trials and practice.
Another theme that emerges in several chapters is itemresponse theory, possibly the most important topic in QOL research at present. Item-response theory offers the potential for questionnaires to be tailored individually to the characteristics of the individual respondent, and administered by computer, thus obviating the need to choose from competing QOL questionnaires and facilitating comparison of QOL outcomes across studies and populations. Although these chapters might be challenging reading for a novice, they are worth pursuing because this topic will only become more important in coming years. This book should be an essential addition to the bookshelf of researchers interested in QOL research; it should be noted for its breadth and readability. The only disappointment was the brief discussions about future directions in many chapters, and the absence of a chapter by the editors summarising what they see as the major accomplishments of QOL research during the past decade, the challenges ahead, and priorities for moving forward. Fayers and Hays are eminently qualified to write such a chapter, and their perspectives would have enriched the book. Nonetheless, this book is very timely, and experts and those new to the subject will find it offers something of interest.
Carolyn Gotay [email protected]
http://oncology.thelancet.com Vol 6 September 2005