CRUCIAL DECISIONS AT THE BEGINNING OF LIFE
parents' experiences of treatment withdrawal from infants
2001464 pages Paperback
ISBN-10 1 85775 479 4
ISBN-13 9781857754797
Hazel McHaffie, Research Fellow and Deputy Director, Institute of Medical Ethics, Loanhead, Midlothian
Foreword by David Harvey, Professor of Paediatrics, Imperial College of Medicine, Queen Charlotte's and Chelsea Hospital, London
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Description
BMA MEDICAL BOOK OF THE YEAR!
This is a unique and valuable work, which traces the experiences of over 100 parents who have lived through the loss of a baby. It follows them from pregnancy through to13 months after the death. Based on rigorous scientific research it describes their feelings when crucial decisions are made on behalf of their child, and examines their capacity to take responsibility
for such decisions. By analysing those factors which help or hinder them, the book provides guidance to health professionals on how the services they offer may be improved.
Neonatologists, paediatricians, midwives and neonatal nurses will find it an essential and enlightening read. Primary care clinicians, intensive care staff and hospital chaplains will discover insights which help them to support a wider group of patients and relatives.
‘This is an important book. It recounts the experiences of families whose babies died or were involved in the withdrawal of medical treatment. What the parents have to say is very revealing and demonstrates how easy it is to make mistakes in their care. Their comments are instructive and will help us in the care of other families. We must aim to give faultless care, but need to recognise that we often fall short of our aim. The parents who recounted the events in these interviews are excellent teachers in showing us where it is easy to go wrong’
From the Foreword by David Harvey
Review Quotes 'A comprehensive and practical book' JOURNAL OF NEONATAL NURSING
This important piece of empirical research pulls no punches due to the openness of the parents and sensitivity of the interviewer. This is essential reading for all members of the multidisciplinary team who work with or support families whose baby is in NNU.' THE PRACTISING MIDWIFE
This is a thorough and extensive piece of work, including much original material. Real parents in a real situation are the best teachers, and I found it highly informative. Anyone who is faced with decisions on treatment withdrawal in infancy care learn from Hazel McHaffie's excellent and monumental work.' JOURNAL OF THE ROYAL SOCIETY OF MEDICINE
'The rich narratives provided by the parents make for poignant yet valuable reading.' JOURNAL OF CHILD HEALTH CARE
'This is a unique and valuable work, which traces the experiences of over 100 parents who have lived through the loss of a baby. What the parents have to say is very insightful, their comments are instructive and will help professionals in the care of other families. This book would be of benefit for all people involved in the care of newborn babies, such as midwives, neonatal nurses, doctors, students, social workers, bereavement counsellors, and befrienders. The personal experiences described means that this book would be an emotional read for parents who have been in this position.' CLIMB UPDATE
'This book will be seen as a 'top buy' for all neonatal units and a 'must read' for all staff working there. It is no surprise to learn that this is the British Medical Association Book of the Year.' INTERNATIONAL JOURNAL OF PALLIATIVE NURSING
'Essential reading for all healthcare staff involved in the management and support of these families. It is also valuable and enlightening reading for pathologists and mortuary technicians.' THE ROYAL COLLEGE OF PATHOLOGISTS
'This book would be of benefit for all people involved in the care of newborn babies, such as midwives, neonatal nurses, doctors, students and social workers, bereavement counsellors, and befrienders. The personal experiences described means that this book would be an emotional read for parents who have been in this position. For any parents currently undergoing a decision making process for their child it may provide guidance and direction from the past experiences of other parents.' CLIMB UPDATE
 Introduction Parental Grief The study method The respondent families Pregnancy and birth (pregnancy up to the onset of labour - The labour and delivery When things went wrong Decision making Management of dying The Funeral Follow up The effect on death on the family Support in bereavement Parents' opinions Some concluding thoughts Recommendation Appendix One: Data on non-respondent families References
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