Ted Freeman and the Battle for the Injured Brain: A
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Ted Freeman and the Battle for the Injured Brain A case history of professional prejudice Peter McCullagh Ted Freeman and the Battle for the Injured Brain A case history of professional prejudice Peter McCullagh Published by ANU E Press The Australian National University Canberra ACT 0200, Australia Email: [email protected] This title is also available online at http://epress.anu.edu.au National Library of Australia Cataloguing-in-Publication entry Author: McCullagh, Peter. Title: Ted Freeman and the battle for the injured brain : a case history of professional prejudice / Peter McCullagh. ISBN: 9781922144317 (paperback) 9781922144324 (ebook) Subjects: Freeman, E. A. (Edward Alan) Coma--Treatment. Coma--Patients--Rehabilitation. Brain damage--Treatment. Brain damage--Patients--Rehabilitation. Brain--Treatment. Brain--Wounds and injuries--Rehabilitation. Dewey Number: 616.8046 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying or otherwise, without the prior permission of the publisher. Cover photograph courtesy of Dorothy Freeman. Cover design and layout by ANU E Press Printed by Griffin Press This edition © 2013 ANU E Press Contents Acknowledgments . vii Acronyms . ix Preface . xi Introduction . 1 1 . The origins of a commitment . 13 2 . Misdiagnosis: Patients’ stories . 33 3 . Families: No easy way forward . 59 4 . Emergence from coma after brain injury: Freeman’s contribution . 79 5 . What future after emergence? . 101 6 . Trials and tribulations . 125 7 . Concerted opposition in Australia . 147 8 . International support forthcoming . 175 9 . Some conclusions . 191 v Acknowledgments This book is intended to represent, in a small way, an acknowledgment of the achievements of people with brain injury and their families. Some of those who sought assistance from Dr Ted Freeman after the Australian healthcare system effectively discarded them are described in the book. They are intended to be a representative selection of the people who sought his help over two decades. Some achieved remarkable results; others were much less spectacular. Some failed to improve; others died suddenly and unexpectedly, often after making good progress. An unknown number of young victims of motor vehicle accidents lacked a family able to intervene on their behalf and may spend up to five decades in aged-care institutions. Traumatic brain injury dominated the life of Ted Freeman for several decades. This book would not exist had he not documented his experiences with patients, their families and his professional colleagues. He generously provided access to everything that he had saved and written. During the period of compilation of the manuscript, I have received notable help and encouragement from people at The Australian National University. Professor Marian Sawer and her committee have provided many suggestions that, when incorporated in the text, have greatly improved it. A member of the committee, Dr Gwen Gray, made an extraordinary contribution to the book, going through it sentence by sentence and suggesting modifications and posing questions to be answered in the revised text. I am very heavily in her debt. When it came to presenting the manuscript in a form suitable for review, my fairly primitive word-processing skills received unstinting help from Alison Plumb. I am most appreciative of her assistance in aiming for a presentable manuscript. Peter McCullagh vii Acronyms AAN Australian Association of Neurologists ACBIC Australian Centre for Brain Injured Children AMA Australian Medical Association BIOS Brain Injury Outcome Study BIRP Brain Injury Rehabilitation Program BITC Brain Injury Therapy Centre FRCSE Fellowship of the Royal College of Surgeons of Edinburgh GCS Glasgow Coma Scale GIO Government Insurance Office (NSW) IAHP Institutes for the Achievement of Human Potential IASTBI International Association for the Study of Traumatic Brain Injury MCS minimally conscious state NBIF National Brain Injury Foundation NDIS National Disability Insurance Scheme NHIF National Head Injury Foundation (US) NHMRC National Health and Medical Research Council PVS persistent vegetative state SMART sensory modality assessment rehabilitation and treatment TBI traumatic brain injury WHO World Health Organisation ix Preface All truth passes through three stages First it is ridiculed Second it is violently opposed Third it is accepted as being self-evident. — Arthur Schopenhauer (1788–1860) As its title implies, this book tells the story of an individual and his career commitment. It also describes the antagonistic response of some of his colleagues. The individual, Dr Ted Freeman, developed a compelling interest, which he pursued at considerable personal cost, in the potential for long-term rehabilitation of people who had sustained an acquired brain injury. The people whom he wished to assist had, invariably, been excluded from mainstream medicine on the grounds that they were ‘unsuitable for rehabilitation’. Freeman’s response to their exclusion followed a rather logical course—namely, designing rehabilitation programs that were predominantly dependent upon families, friends and volunteers. This involvement of non-medical personnel in rehabilitation undoubtedly fuelled some of the antagonism that he experienced. Redirecting his career pathway, Freeman pursued his interest in attempting rehabilitation of people with brain injuries for whom conventional approaches had nothing to offer. He studied the limited information on repair processes after brain injury available in the medical literature in the early 1980s. Taking account of this, he formulated some hypotheses and proceeded to apply the implications drawn from these in his clinical practice. In 1988, I was contacted on behalf of a group of people who were in the process of establishing the National Brain Injury Foundation (NBIF) and were keen to have a medically qualified person as a board member. Some of these people had personal experience of brain injury and its aftermath. Shortly after this, I first met Ted Freeman. The NBIF had been conceived as a community-based organisation the goal of which was to provide whatever form of practical assistance could help people with acquired brain injury. Such assistance was usually given by working through patients’ families. Ted Freeman had come to the aid of many of the families who became NBIF members and, throughout the 1980s and 1990s, he had frequent contact with the Foundation. Until his retirement in 2000, the NBIF sought to support the man and his work. On some occasions, when he visited patients in Canberra, I had the opportunity to sit in on his meetings with them and their families and found his approach to be as described below. xi Ted Freeman and the Battle for the Injured Brain As president of the Foundation for 12 years, I had regular contact with Ted and was aware that he had collated an account of his experiences with a view to publication. In order to facilitate this, he retained copies of relevant letters and other documents. All of the items to which reference is made in this account are held by him. When he decided not to proceed with writing an account of his experiences, I offered to assist him with the project. In the event, he declined joint authorship and the result has been a book about him rather than one written collaboratively with him. In reviewing the manuscript, as it neared completion, Ted wrote that his concern had been and remained the systemic failure of the medical profession in both diagnosis and treatment of severe brain injury. My position is that I was a vehicle to bring the failures of that system to public and professional notice—nothing more. He said to me: I see that still to be the substance and challenge of the book you have written and that you also are a vehicle of disclosure. In the course of preparation of the manuscript, I have extracted much information from his account, supplemented by frequent discussion with him, but I have also taken the opportunity to draw what I consider to be some more widely applicable inferences about issues raised by his experiences. When using Ted’s material, I have chosen to present different aspects of brain injury together with his responses to these in separate chapters rather than following his original chronological account. This has entailed separation into two parallel narratives dealing with the evolution of his practice and with the concurrent events that impacted upon that evolution. This has some distinct advantages and some drawbacks. A significant advantage is that it becomes possible to discuss any specific aspect, such as his impact on management of comatose patients in Chapter 4, as a single entity rather than returning to it and discussing it piecemeal on several occasions. Most helpfully, it facilitates consideration of wider implications of an event, such as the clinical trial in Chapter 6, without having to interrupt a chronological account. A drawback of moving away from a chronological account is that it becomes necessary at some places in the text to recapitulate detail from an earlier chapter if that detail is essential to an explanation of why particular events occurred. Chapter 5, which deals with the evolution of Freeman’s practices, insofar as they relate to patients who have regained consciousness after a brain injury, spans a period of more than 15 years. During this time, Freeman’s base moved from one of Sydney’s largest public hospitals to a purpose-modified centre and xii Preface then to a caravan travelling around New South Wales. A full account of the events occasioning the three moves will be provided in Chapters 6 and 7 but the aggregation within a single chapter of Freeman’s activities over the three stages is intended to shed light on the manner in which evolution of his practice was influenced by external events. xiii Introduction The work of Ted Freeman and the local medical profession’s response to it raise several critical issues that have ongoing relevance for Australian health consumers and health policymakers alike.