Vital Signs : Stories from Intensive Care [1 ed.] 9781742230962, 9781742230955

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Dr K en Hillman is a professor of intensive care at The University of New South Wales in Sydney. He was the first doctor in Australia to formally qualify as an intensive care specialist and is recognised as a leading figure in the field internationally. He is coauthor of the widely used textbook Clinical Intensive Care and is the director of the Simpson Centre for Health Services Research, affiliated with the Australian Institute of Health Innovation at the University of New South Wales.

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To all the dedicated doctors and nurses with whom I have had the pleasure of working.

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Ken Hillman

Vital Signs stories from intensive care

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A New South book Published by University of New South Wales Press Ltd University of New South Wales Sydney NSW 2052 AUSTRALIA www.unswpress.com.au © Ken Hillman 2009 First published 2009 This book is copyright. Apart from any fair dealing for the purpose of private study, research, criticism or review, as permitted under the Copyright Act, no part may be reproduced by any process without written permission. Inquiries should be addressed to the publisher. National Library of Australia Cataloguing-in-Publication entry Author: Hillman, Ken. Title: Vital signs: stories from intensive care/Ken Hillman. ISBN: 978 1 74223 095 5 (pbk.) Subjects: Intensive care units. Emergency medical technician and patient. Critically ill – Care. Dewey Number: 616.028 Design Di Quick Cover gettyimages.com Printer Ligare This book is printed on paper using fibre supplied from plantation or sustainably managed forests. All reasonable efforts were taken to obtain permission to use copyright material reproduced in this book, but in some cases copyright holders could not be traced. The author welcomes information in this regard.

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Contents

Preface 7 1 | The angel of dying 13 2 | A colonial at Barts 20 3 | Ageing doctors 30 4 | The elephants’ graveyard 39 5 | The myth of CPR 52 6 | An interesting case of blue feet 70 7 | And the blood goes round and round 78 8 | Orchestrating deaths 89 9 | Father of the year 99

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10 | When things go wrong 106 11 | The wonderful gut 115 12 | The labels on the pack 130 13 | The last photograph 140 14 | Michelle and the life-support machine 146 15 | Some ethical issues 156 16 | When the muscles won’t work 170 17 | Pathos 179 18 | Euphemisms 188 19 | Spectacular successes 198 20 | Fatima and John: the difficulty in dying 207 21 | The worst injury of all 218 22 | Patient-centred care 227 23 | Getting it wrong 241 24 | Surviving the experience 249 25 | Dying by other names 254

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Preface

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any of us will spend the last few days of our life in an intensive care unit (or ICU). For many, it will be a painful and futile experience, causing unnecessary suffering for both the patient and their loved ones. Around thirty years ago, death was treated as a relatively normal and inevitable experience. It is now a highly medicalised ritual. Nowadays, when someone who is old and near the end of their life suddenly or even gradually deteriorates, the ambulance is called. The paramedics cannot be discretionary, even when it is against the wishes of the patient. The role of emergency rooms is to resuscitate and save lives, and package the patient for admission to hospital, whether active treatment is appropriate or not. The system then takes them to the ICU, either directly or via the general wards of a hospital. 7

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It is difficult to get off this conveyer belt. The reasons why are many and complex. Unreal expectations of what modern medicine can offer, reinforced by everyday stories of the latest medical miracle; the inability of politicians and health care funding bodies to rationally limit resources for end-of-life care without accusations of neglect or even murder; the lack of funding for alternative ways to manage end-of-life care; the difficulty of progressing this discussion in a society with such diverse opinions; the increasing specialisation of medicine, with no-one being too sure what the limits of each other’s specialty are; the very practical fact that it is easier for busy clinicians to continue active treatment than to undertake the often difficult and time-consuming business of talking to relatives and patients about dying. All of this is exacerbated by a health system driven by fees for services, and procedures or reimbursements related to diagnostic groups, in which case there is little or no incentive to even embark on the messy and difficult business of managing dying. Then there are the ethical issues and the fear of litigation from a predatory legal system. All these factors mean it is increasingly likely that a patient will not be plucked off the conveyer belt until everything medical has been administered and the last few minutes of life have been squeezed out. There are limited provisions for rescuing these people and providing more appropriate care. My own specialty of intensive care often acts as a surrogate end-of-life service at enormous and unsustainable cost to society. About a third of all Americans now spend the last few days of life in an intensive care unit, costing more than $US2000 per day, often bankrupting families and/or costing the state a rapidly increasing proportion of its funds. It is difficult to discuss this 8

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elephant in the room. If patients were not given every life-saving therapy, politicians and bureaucrats could be accused of simply wanting to save money. Community and even medical expectations of medicine are unreal, and we see a patient surrounded by high technology as meaning there is a high chance of recovery. Then there is the complex issue of just how many resources should be used to manage the seriously ill at the end of life, and who should make decisions about resource allocation. Any perceived criticism of medical practices in this book is about the systems within which clinicians work and is not directed at the individuals who work there. In my entire career, the vast majority of doctors I have worked with have been hard working, diligent, caring and proud of the privileges and satisfaction that practising medicine brings. Whatever their individual beliefs and feelings, I have never witnessed a doctor discriminate against any individual patient based on their wealth, class, religion or culture. The stories in this book are rather about the fact that much of the hospital system seems designed to fail. Hospitals have been pieced together over centuries. For example, on the one hand, patients are treated in high technology areas such as an intensive care unit, where they have access to numerous specifically skilled clinicians, and are surrounded by machines which can monitor the body’s functions and support life. These areas have been grafted onto general wards, where the nursing levels and ways of monitoring have not changed much over the centuries. This is despite the patient population being older, with the many underlying health problems associated with age, and having more complex interventions and therapy. It is not surprising that patients rarely die in an unexpected way in p r e fa c e

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intensive care, compared to the high incidence of potentially preventable serious adverse events and deaths on the general wards. With the push for shorter lengths of stay in hospital, it can be assumed that patients are in hospital because they are ill and need complex care. They are now rarely seen walking around in dressing gowns and slippers. However, hospital systems are still built around admitting senior doctors who may see their patients for ten minutes each day and have observations, such as the pulse rate and blood pressure, recorded by hand on a chart at the end of the bed. Moreover, in larger hospitals, the admitting doctor is often a single-organ disease specialist (or SODS) and patient health issues are rarely confined to single organs. However, the system of a senior doctor being ultimately responsible for an individual patient is probably infinitely better than a health administrator calling the shots, as they cannot help ultimately serving their own bureaucracy and funding bodies; managing up, not down; coming in on budget; and trying to stay out of the media. That system would also be designed to fail patients. New systems built around and judged by meeting the needs of patients would profoundly change the way we deliver health care. The same system of compartmentalisation of hospitals and specialisation of medicine means many patients fall between the cracks and, as a result, hospitals have become dangerous. Not only are hospitals not safe for those with a treatable condition, they are not safe for those who are dying. My grandfather died at home in 1959, managed by a wonderful general practitioner. Most of my friends’ grandfathers died at home. Gradually, as medicine could offer more, it was not a case of whether we should but whether we could. A medical conveyer 10

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belt from the community to hospitals was being developed for those at the end of life. The health system is geared to actively treating patients, not to recognising the dying and setting those patients on a more appropriate pathway. Medical specialists, even cancer specialists, are often uncomfortable with patients who are dying. They can usually think of something more that can be offered. Finally, as patients become even more ill, they are often admitted to intensive care. Up to 70 per cent of people now die in acute hospitals; surrounded by well-meaning strangers, inflicting all that medicine has to offer; often resulting in a painful, distressing and degrading end to their life. These stories are about what happens in intensive care units, told by a practising clinician. They are not only about death and dying. There are also stories about amazing saves. Some of the stories are about the resilience and vulnerability of the body, especially when it is under threat as a result of serious illness; and how the individual organs and systems can work normally under the pressure of life threatening illness. The stories are also about the machines that can keep us alive, machines that would probably impress our forebears but which are really quite crude compared to the way the body operates. The book is sometimes critical of the way medicine is practised; the way doctors can work within a comfort zone that leaves patients and those caring for them, confused. Increasingly, people will want to be involved more in their own end-of-life care. They will also want to know more about the emotional costs to themselves and their close ones as a result of being admitted to an ICU. Ageing, death and dying p r e fa c e

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currently do not attract a lot of attention in the media. The stories we do hear are usually about the latest miracle cure or survival after cardiac arrests or horrific accidents. The book is about how intensive care units, initially established to temporarily sustain life until recovery, have become places where many of us will spend the last few days of life, and where recovery is not possible. Above all, the book is about people who are faced with the unexpected and the tragic and the stories around these people.

Author’s note The patients and the stories within this book are composites of people and events, based on episodes, encounters and experiences over many years and in different hospitals. Pseudonyms are used and in order to further preserve confidentiality, each patient represents a fictionalised conglomerate of experiences from different people and at different times. The names and personal details of colleagues are not mentioned. Nor have I mentioned the names of all the hospitals I have worked in over the past thirty years. Nevertheless, the stories reflect what happens in intensive care units. Above all, they are about the unique team spirit that operates in an intensive care unit, where the standard of care is the result of the collective effort of all levels of staff, twenty-four hours a day, and where none of them ever suffers from ‘compassion burn-out’.

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1 | The angel of dying

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had taken over Rosemary’s care late in the course of her illness. She had been operated on two months previously for a cancer of the duodenum – a rare tumour in the upper part of the intestine, just below the stomach, where the bile and pancreatic fluid pour into the intestine, mixing with the newly arrived food, aiding digestion and facilitating absorption of the food. The operation to remove this cancer is called a Whipples procedure, named after the first surgeon who performed it. I’ve never quite understood the details of the anatomy of this operation, but because of the many serious complications in the post-operative period, it strikes fear in the hearts of those who care for these patients. Many die prolonged and agonising deaths in the days or weeks following the procedure. 13

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The operation is technically difficult to perform, involving removal of most of the pancreas, as well as resecting and rejoining pieces of intestine. Sutures in the reconfigured bowel are prone to breakdown, leading to leakages and abscesses which require further surgery. If I was told my only hope was to have a Whipples procedure, I would get my affairs in order and discuss any outstanding issues with my loved ones. Rosemary had a stormy post-operative course over eight weeks. Her bowel had multiple leaks, forming pockets of fluid within the abdomen that had become infected. Drainage of the abscesses was unsuccessfully attempted. The intra-abdominal infections had affected many of her more distant organs, poisoned by the rotting and infective process around her pancreas. The usual intensive care paraphernalia was being employed to maintain life. To complicate matters, she had started to have seizures. Rosemary was only forty years old and her husband, Terry, was fifteen years her senior. When staff used Terry’s name, it was said with warmth and respect. I wasn’t surprised, when I finally met him, to see a fine man – concerned for his wife and generous to the staff caring for her. He seemed to give you a bit of himself when he first shook your hand – not in an ingratiating way; simply trusting you. He told me about his two boys – aged twelve and fourteen. There was no doubt Terry loved his boys, both in their own right and because they were the children of the woman he obviously loved. My professional veneer and barriers were being challenged by his openness and honesty. I told Terry that his wife was dying and that there was nothing more we could offer. He reflected on the news and said it 14

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wasn’t unexpected, and immediately expressed doubts about whether he was capable of bringing up the boys by himself. If unconditional love counts in the ability to bring up children, they were probably safe. I explained that we would probably withdraw active treatment the next day and asked if he would like his boys to be present while she died. His first reaction was reluctance. While respecting his feelings, I said that it can be a positive experience to involve children in these important events. I described previous experiences where children were involved in the dying process. He said he would think about it overnight and, just before leaving, asked that if he were to bring the boys in, would I explain to them what was happening. Rosemary had deteriorated overnight. That morning the surgeon was going to explain to Terry that the end was near. Then I saw Terry and his two boys walking towards me along the corridor. They looked spic and span. Their clothes were almost overironed, with sharp vertical creases across the back, their hair well combed and their faces scrubbed. I approached them, possibly too brightly, trying to gain their trust. Terry left me alone with the boys and I started to explain the images on their mother’s CT scans, pointing out the complications that were killing her. They weren’t interested. I was too focused on trying to be honest, to make things concrete, so there would be no doubt. I tried to retrieve things by asking them to tell me about their mother – what sort of person she was, what she liked, what made her laugh and other things, in an attempt to appear more caring about her and not just explaining her medical complications. I was daunted by the thought that she would die today; that t h e a n g el o f dy i n g

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Terry, their father, was currently having the outlook explained by the surgeon; and that the boys would remember images of this day forever. Maybe they would remember me as being insensitive or inappropriate. I relaxed a bit more and just sat with them, not saying much and then asking about the photographs surrounding their mother’s bed. With some prompting, they began to tell me about the family, before their mother’s illness. Finally, Terry returned from speaking to the surgeon. He then asked me if it was convenient for me to speak to both him and his boys now. The surgeon had told him that nothing more could be done for Rosemary and that he now needed to talk to the intensivist about what the next steps were. I guessed that meant I was to explain how we were going to withdraw therapy and when she was likely to die. The four of us gathered in the conference room, where we often talk to relatives in private. I didn’t ask the nurse looking after the patient, nor the social worker, to join me. The combination of the family’s trust and decency combined with the imminent death of the woman they all depended on and loved made me feel unusually vulnerable. I didn’t trust myself to talk about Rosemary without breaking down. I needed privacy as much as the small family I was with did. I set the scene by going over details that I knew had already been explained, such as the operation and all its complications; how everything that could be done had been done and that now she was dying. They knew all this and just wanted to know how and when. I said she would slowly drift away, almost certainly within the next few hours. Terry already had tears running down his face and now his eldest son started quietly weeping. Their 16

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heads were erect and they held their hands on their laps. Terry said to the boys that he didn’t know how he was going to bring them up. The boys seemed to understand that the grief of their father for his wife was being transferred to the genuine concerns he had about being a sole parent. They reassured him with their glances, but they were focused on their own grief. The younger son appeared resolute, staring ahead, sometimes looking at me. His black curly locks contrasted with the straight fair hair of his elder brother. Terry said that he would ask his sister to take his sons home and then he would sit with his wife. I urged them all to consider staying together in the room with Rosemary while she died. Courage was obviously required but I suggested that she would feel comforted knowing that the boys could look after their father and that they could share the grief around what was about to occur. Knowing that they would have no previous experience to draw on, I said it was very common to have children present on these occasions and important both for the way they all had to deal with the hurt now as well as for the future. I was, however, suggesting that they sit through it together without any proof that it would be the best option for them, and acutely aware that the suggestion was based on my own values and beliefs. I didn’t know where the proof would be anyway, and how science would conduct the definitive study where relatives of all different classes and backgrounds were subjected to measurements of wellbeing at the time of dying and then at intervals for years to come. Some things elude science. The boys were caught off balance. Their father had previously suggested to them that they go home with his sister, but t h e a n g el o f dy i n g

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now reconsidering, he asked the boys what they would prefer. They shrugged their shoulders and looked down. I probably should have left the room at that point and let them grieve in their own way and discuss things; but they seemed lost, needing consoling or something less stark than simply facing the mechanistic process of withdrawing therapy.

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According to a Scandinavian legend, at the time of the death of a child, an angel comes down and, as the body is fading, takes the child in her arms, and shows it the places on earth where the fondest memories are, just before the child goes to heaven. Although I’m an atheist, I am very attached to this legend and imagine, when I see patients in the moments before death, the angel gently taking them in her arms and showing them the 18

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places where their most beautiful memories are. I had never talked to my colleagues or to any relatives about these thoughts before. There was confusion in this little group; the father was lost, and the boys were devastated by the imminent loss of their mother. I took a breath and relayed the Scandinavian legend to them and explained how they must have shared many of those favourite places and the moments that their mother was about to be shown, and said that it may help if they all stayed with her and thought about those things and shared them with her. I said, ‘You will all know what these moments were – birthdays, saying something silly, laughing together, outings, or just private moments shared at home’. The youngest son suddenly broke down, the tears streaming down his face, but his head still erect and his hands wildly rubbing his thighs. They moved their chairs together in a little circle and clumsily held and comforted each other. I found a space where I could be by myself and quietly wept. Later I saw the boys and their father with Rosemary, holding her hands and resting on her body as she died.

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2 | A colonial at Barts

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ike many Australians, I made my pilgrimage to Britain in the mid 1970s. As a baby boomer, I had been culturally intimidated by Britain. Like many Australians, I then felt cheated to learn that the culture with which the English terrorised colonials was not in fact English but European. Their own history was not strong in classical composers. They had very few great artists. The great novels were melodramas around the manners of the middle classes. The performances at the National English Opera were ordinary. I was resentful that I hadn’t been taught about Schiller, Goethe and Proust at school. Britain’s cultural strength was in television and contemporary music. Their comedy was the best in the world. I loved living in England for reasons other than the Eng20

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lish version of ‘culture’. Being a colonial, I was anonymous, not doomed by my accent or dialect like the English lower middle and working classes. I spent a lot of time walking in the beautiful countryside. I loved the seasons. Above all, I admired the health system and had enormous respect for the colleagues I worked with. My teachers were dedicated, hard working and extremely competent. I made life-long friends there. I felt so comfortable that I became a specialist in the system and was committed to spend my life there. But that, as they say, is another story. In particular, I loved the first hospital I worked at – Saint Bartholomew’s Hospital in London (or ‘Barts’). Barts became a model for hospitals in the UK and the British Empire. In many ways, the model still dictates the way we process and manage patients. The old operating theatres at Barts now have the latest equipment and the most complex procedures are performed there. The original wards have been refurbished into intensive care units and other centres of high level care. We don’t know exactly when and where the concept of a hospital developed. There were medical schools and hospitals in the Muslim world as early as the seventh century. Hospitals in Europe were initially developed as charitable institutions for the poor who were sick. St Bartholomew’s was the oldest hospital in the United Kingdom. It was founded in 1123 by Rahere, a knight who fought in the Crusades. Apparently, he became ill in the Holy Land and had a vision of St Bartholomew while he was ill. He vowed that if he recovered he would found a priory and hospital for the sick and poor, at Smithfield in London. Until at least the middle of the twentieth century, hospitals a c o l o n i a l at b a r t s

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in Britain were mainly for the poor; the rich were treated at home. The late King of England, George VI, had his left lung removed at home in September 1951. Granted, he lived in Buckingham Palace. His continuing management was also provided in his home, where he died peacefully in his sleep in February 1952.

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The end of the system of home-centred treatment coincided roughly with the gradual transition from black-and-white to colour movies. Somewhere around the late 1940s, the cry of ‘call a doctor’ was replaced with ‘call an ambulance’. Before that, it was probably reasonable to call a doctor as the first option. The combination of the doctor’s skills and what he carried in his black bag was roughly equivalent to what a hospital could offer. Before the Second World War, only drugs such as narcotics for pain relief, diuretics for ‘dropsy’ or fluid retention and digoxin for a failing heart or palpitations existed. Adrenaline was used for serious cases, where everything else had failed. In 22

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this way, hospitals offered little more than general practitioners. There was no chemotherapy; no thrombolytic drugs for dissolving clots in blood vessels; or the myriad of drugs used to sustain life in modern intensive care units. Hospitals did perform some major operations, albeit with a high mortality rate; but there were no specialist anaesthetists nor advanced facilities for post-operative care. Intravenous drips were almost non-existent and the concepts of intensive care and emergency medicine and resuscitation had not been developed. After you had been run over in the streets of London, you more than likely took your chances at home in your own bed for a few weeks. During the 1950s, hospitals gradually became more prominent, eventually becoming the self-proclaimed flagships of modern medicine. The hospital was beginning to have resources and interventions other than those in the doctor’s bag. The consultant is the specialist now ultimately in charge of a patient’s care – the one under whom the patient is admitted to hospital, and she or he is still where the buck stops. In Britain at around the time of the Second World War, consultants gave of their time to public hospitals for free. They would earn their living by seeing wealthy patients in their own rooms or visiting them at home. The public hospital was the centre of another world. Here, doctors would visit their patients once a week on a ward round or ‘grand round’, as it was sometimes called. The sister in charge of the consultant’s ward would greet him (it was invariably a ‘him’ until relatively recently) with tea and scones. The junior medical or ‘house staff ’ entourage would be invited a c o l o n i a l at b a r t s

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to tea as well. They were called house staff because they lived in the hospital and worked around the clock. This was their ‘house’ or home. They had quarters, with small separate bedrooms and a common mess, where they ate, played cards and swapped stories. They were paid little or nothing. Indeed, for some of the more prestigious positions, they had to pay for the privilege of learning. There was a hierarchy of junior medical staff. The lowest in the pecking order were the housemen. They were in their first postgraduate year and are now called interns in some countries. While not making many major decisions concerning treatment, the housemen learnt the system and became institutionalised. They would co-ordinate all the activities around the patients’ care: take blood tests; organise consultations with other specialists; liaise with the nursing staff; and talk to relatives. They learnt who they had to impress, and how to achieve their ambitions. The next layer in the hierarchy was the senior house officer (SHO) or resident medical officer (RMO). It’s the next step up from houseman and is usually for a one- or two-year period. The word ‘resident’ was used in a similar way to ‘house’. You were expected to reside in the house or hospital on an almost full-time basis. Doctors rarely married at this stage, as their permanent home was the hospital. Needless to say, these conditions inspired many of myths and realities around doctor/nurse relationships. At the end of the residency you usually hung up your ‘shingle’ and became a general practitioner. A minority continued specialist training for several years as a registrar. Thus, the hierarchy was complete. The consultant gave of his precious time, teaching medical students and junior medical staff at no cost. This 24

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not only gave the feeling of virtuousness that comes when the rich and powerful give to charity, but it also became the source of his future business. The way he managed patients was on show for the medical students and junior medical staff that he taught. As general practitioners, they would then choose the specialist to whom they would eventually refer their patients. In turn, his junior doctors would work twenty-four hours a day, looking after his sick and poor hospital patients. The registrars, training to be specialists themselves, would work for little or no income for several years. The institutionalisation process was complete when they were conferred specialist status by the relevant Royal colleges. The public hospital was also the site of teaching and research. Apart from the victims of poorly conducted experimentation, everyone seemingly gained. The patients received an (albeit brief) opinion from the specialists, whom they otherwise could not afford. The medical students had access to patient material for learning. The junior medical staff worked ungodly hours in return for the opportunity to practise and learn their craft on the poor. The specialist visited once a week in return for the satisfaction of being revered and for the future business it brought in. Care of the poor was subsidised by the rich. It was less than perfect but compared to the market-driven system operating today in some developed countries, at least the poor were cared for. I saw the end of this system while working at Barts in the 1970s. I saw the last of the real housemen – a young doctor who worked in-house, with hardly a day off. On Fridays, the consultant in charge of this team was met by his junior medical staff, standing in a line of diminishing seniority, dressed formally a c o l o n i a l at b a r t s

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in tails with carnations in their buttonholes. They would open the door of his Rolls Royce and usher him to his ward, where the sister in charge would shoo all the junior nurses away and serve tea, before conducting the weekly grand round. The sister in charge of each ward would lead the parade, followed by a phalanx of other doctors and nurses in order of decreasing seniority and importance. Each patient’s story would be presented, pronouncements made and the patient spoken of in the third person, while students practised their physical examination techniques under the critical eye of the consultant. I am not criti-

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cising or ridiculing these rituals, because the consultant’s staff felt that they were an important part of this team. Consultants were often good teachers and proud of the reputation of their hospital. Perhaps it was because I was Australian, a colonial, that I felt that the rituals around this anachronism represented the best 26

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aspects of the system, rather than seeing its obvious shortcomings. It felt more relevant and patient friendly in this original setting than it did in the sometimes ponderous and distorted colonial imitations that I had witnessed in large Australian teaching hospitals. Society and my own profession may already look back on my own senior house officer years, when I worked every second day and night, and consider it unacceptable to the modern eye. The ecology is delicate in hospitals. It evolved over centuries. Changes in the last two decades or so have produced anomalies; some good and some bad. From a patient’s perspective, the system remains basically the same, but the power balance has shifted. Hospital administrators previously facilitated a system built around the visiting specialist. In the latter part of the twentieth century, administrators felt the need to not only administer but to control the increasingly complex and expensive hospitals. Firstly, junior doctors were paid for the hours they worked, thereby becoming responsible to the system that they worked for, rather than to consultants. I was part of the first group to be paid overtime rates for the more than 100 hours a week I often worked. My immediate predecessors were paid a small weekly wage without overtime. I also had to work for several consultants, so I wasn’t part of a dedicated team. Interns nowadays can work for up to ten bosses. The irony was that the administrators first had to get specialists onto the payroll in order for them to have any control over their activities. The piper plays the tune. In my first year as an intern, specialists moved from being honorary medical officers (HMOs) to being paid consultants. Initially, the sum was small but by being paid, they became accountable. a c o l o n i a l at b a r t s

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The same occurred in the UK with the nationalisation of the health system. Administrators were now paying for the doctor’s services but they still only controlled the ‘unimportant’ parts of the system such as bed linen, food and cleaning. Governments were finding it increasingly difficult to fund the never-ending array of new drugs and procedures that doctors and industry were developing. There was little control over these advances. What could governments say? ‘We cannot fund any more new operations or drugs’? Health administrators had the unenviable task of funding all the technological advances as well as the extra trained staff necessary to implement them. They were reduced to cutting services in crude and superficial ways in order to come in on budget. Elective operating lists were reduced, hospitals closed, bed numbers reduced and free biscuits for morning tea scrapped. The new administrators are often ‘content free’ – with little experience of the core business of health service delivery and patient care. They often come from a management or accountancy background. Clinicians don’t trust them and they don’t trust the clinicians. Administrators see clinicians as minorpawns on the big chessboard; units of labour to fit in with the cheapest way of delivering health. However, doctors still dictate the level of quality and service delivered in what’s left of a hospital, after the cuts have been made. Governments and their bureaucracies have a gun at their head continually – if resources aren’t available, clinicians threaten that patients will die and it is the fault of the system from which they conveniently distance themselves. The administrators have unwittingly placed themselves in the position of being where 28

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the buck stops, as far as providing the resources for hospitals to deliver care; while the doctors remain where the buck stops when it comes to patient care. The two groups have two different goals – the administrators have to stay out of the newspapers and come in on budget and the clinicians must deliver good patient care and make a living. The two goals are incompatible. The delicate ecology developed over the centuries was changing too rapidly, driven by the perceived need for control by bureaucracy and clinicians’ fear of losing control. The idea of one senior doctor controlling everything to do with patient care in a hospital is being revised. Lawyers still see them as targets, being supposedly responsible for overall patient care. The administration has taken much of that care away but avoids the responsibility for patient care when the lawyers and media move in. There was, and perhaps still is, an opportunity to redesign the system around the common goal of patients’ needs. The best parts of the old system could be retained, while at the same time building a system sensitive to patients’ needs in a collaborative way.

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3 | Ageing doctors

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he beginning of the year is a potentially dangerous time in acute hospitals. Medical students suddenly become practising clinicians, interns are let loose on the unsuspecting public, everyone else moves up the ladder into a new position, with different responsibilities. The system is vulnerable and patients line up in the emergency department, totally unsuspecting. It was in this first week that I was doing rounds in the intensive care unit by myself. The junior doctors were all undergoing orientation. Instead of giving overall directions and solving major problems, I was filling out forms for investigations, writing in the clinical notes, doing the work of the resident, registrar and senior registrar; the usual hierarchy in which roles and functions have been well defined over the years was no longer there. 30

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This exposed not only a weakness in the system but also made me feel anxious and reflect on the fact that along the way, while I had picked up new skills and had become better at some things, I had certainly either lost others or they had severely diminished. Technical skills were something I had let slip; deliberately in one way, so I would have more time to teach, to do research, talk to relatives, be on committees and have a life of my own. It happened in a pernicious way, as I gradually ascended the hierarchy. The reflexes necessary to act in a real emergency had not been tested for many years. My technical skills had also diminished. At one time in my life, I competed with peers to insert lines into the major veins under difficult conditions, as well as in other technical skills, such as the insertion of epidurals around the spinal cord and lines into arteries. One of the more important skills in acute medicine is being able to secure the airway, often involving intubation of the trachea or windpipe. The intubation is performed by inserting a hollow plastic tube through the vocal cords, under direct vision aided by an instrument with a curved blade and a light at the end. The tube then becomes the conduit for delivering oxygen into the lungs, using an inflatable bag or a ventilator. You never forget the first time you have to perform this procedure by yourself, with no back-up. I must have had about twelve tubes lined up – all of different shapes and sizes, as well as every fail-safe device opened and ready, just in case I botched it. I remember feeling relieved that a surgeon was nearby in case I still couldn’t insert the tube and would require him to perform an emergency tracheostomy, involving slitting the throat and gaining access to the trachea in the lower part of the neck. ageing doctors

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Even after hundreds of successful intubations, you never lose the sense of relief when you have secured the airway. It means that you have enormous control in supporting the other vital organs, such as the heart and lungs. It also means that, although the patient may still die, it won’t be because you haven’t been able to secure the airway, support respiration and deliver oxygen – some of the priorities of resuscitation. You might empathise with me, when during the day, without any junior medical staff, I had to assist a colleague perform a tracheostomy and my role was to maintain control of the airway. It started out well. I could just visualise the vocal cords and could see the tube going through the cords into the trachea. The problem was that I had acquired reading glasses since the last time I had to intubate a patient. I either had to pull my head too far back to see the vocal cords without glasses or have it too close to see with glasses. Eventually, I had to ask a colleague to take over. Within half an hour, I was urgently called to a major trauma case in the emergency department and again had the role of controlling the airway. It had been so long since I had performed this role that I put on the lead coat, protecting you against x-rays, the wrong way around. The last time I had put one on, the closure was at the back, and now it joined at the front. I could see the more junior members of the team looking anxiously in my direction. They were about to go through a well-orchestrated life-saving drill with skills that were well honed – almost like reflexes. Meanwhile, I couldn’t even put my lead coat on and was holding up the whole show. I was thinking about possible scenarios and how I would deal with them; similar to when I was 32

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anaesthetising patients after being on holidays for several weeks, having briefly lost the usual reflexes and having to concentrate to remember the next steps. The young man we were assisting was severely injured. I was relieved to see that the tube into his lungs had already been inserted by the paramedics, and was secure. I only had to ventilate the lungs, which I was quite comfortable doing. I decided

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that if the tube became dislodged, I would immediately ask for assistance, rather than even attempting the procedure. I realised this may have been humiliating for me and embarrassing for my colleagues. Pride is one thing, but being responsible for a patient’s life is another. I was grateful that there were at least three other staff in attendance who could assist if needed. Nevertheless, these two situations made me uncomfortable and led to some reflections on ageing and how difficult it is to maintain the broad range of skills necessary to practise your speciality. I had had a conversation about this issue a month ageing doctors

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earlier, with a colleague who was around my age. He said he was becoming more at ease with his role as a consultant or overall coordinator of patient care and quite comfortable with delegating other responsibilities in order to ensure good patient care. Like me, he no longer had the same technical skills as the more junior staff who performed them regularly. However, he was reluctant to openly talk about the issue with his peers. His role now included designing and maintaining systems, where procedures were performed by the person with the most appropriate experience in that area. He had come to terms with the loss of these skills and the macho-like satisfaction that came from being able to perform them; unique markers of your speciality, setting you apart from others. He would no longer be able to indulge in the satisfaction of arriving at an emergency and saying, ‘Stand back, I need to save his life’. The hospital where I trained as an intern had an annual ritual where the senior specialists of the hospital covered the general wards and emergency department while the outgoing and incoming junior medical staff celebrated the end of the year over drinks and food at a party in the residents’ quarters. This night provided legends and myths that sustained the hospital for the remainder of the year. They always involved the most senior physician being unable to insert a simple venous cannula or a senior surgeon being unable to diagnose straightforward medical conditions. The nursing staff dined out for weeks on stories of the incompetence of the senior doctors. The senior doctors themselves had a lot of fun, asking each other for help and advice and having to put up with ribbings by their colleagues. 34

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It couldn’t happen today, with fear of litigation and a greater sense of responsibility to the community. It seemed harmless at the time. In fact, it was seen as a generous gesture by decent senior clinicians. It was a way of welcoming you to the club and acknowledging that much of the hard, after- hours work is performed throughout the year by junior medical staff. I can sympathise these days with the gratitude that senior doctors felt when they could have a decent night’s sleep in order to perform adequately the next day.

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Nevertheless, I reflected on the inevitability of formalising a system where one shouldn’t be required to perform skills which aren’t practised sufficiently to make you safe in most circumstances. It’s not about face saving, as much as the changing role of senior clinicians and acknowledging that the best person should always perform the task in health care delivery. I was the weak link in that regard and my first day of ward rounds ageing doctors

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that new year exposed that weakness. I am declaring that I am no longer performing these technical skills and will always seek assistance, just as I would refer a patient for brain surgery to a neurosurgeon. As the ward round progressed and my medical team returned from various emergencies around the hospital, I came to a patient who did not require any urgent medical procedures, and one for whom I was comfortable assessing and setting a plan. Bill was dying from a disease of his muscles. He was connected to lifesupport machines, could not talk and could only barely move a finger. He had almost no way of communicating but would understand everything I said. I sat next to him, held his hand and explained that we had a diagnosis; and that it was a fatal disease for which there was no treatment. I rambled on about how we may have given him unfair expectations during the process of establishing a diagnosis. I then drifted into talking about his life, trying to imagine what he must be feeling and how I would feel in his circumstances. Withdrawing or withholding treatment in the seriously ill is by far the most common cause of death in the ICU. The burden of accepting the bad news is on the relatives, as most patients are unconscious. It is different with conscious patients, like Bill, who will die while you watch, as a result of withdrawing or withholding treatment. It’s not like telling a patient that she or he will die of cancer in weeks or months. In intensive care, informing the patient of the inevitability of dying is often followed quickly by the act of withdrawing treatment. The psychologist attached to our ICU, and doing research on the dying process, knew about 36

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Bill and had asked me earlier in the day where I got my training on how to deal with dying patients. I explained that it was merely picked up on the job. While there was extensive literature on dying from cancer and the specialty of palliative care; this was different to distilling the whole process of informing about impending death and how we should cease treatment, all on the same day. You felt like both the priest and the hangman. In my first job as a doctor in an emergency department, I worked with a resident who was later to become an internationally famous film director. One day he had to inform relatives about the death of a patient after he had suffered a heart attack. Not having had any training at all in this area, I asked him how he would approach it. He said, ‘Exactly like they do in the movies. I will assume an appropriately serious expression, shuffle my feet, look down and mumble, “I have bad news for you”. Cut to the relatives’ faces – shock, tears; exclamations of how it couldn’t be, he was well this morning; we had breakfast together; he went to work like any other day; there’s been some mistake doctor; I want to see him. Cut to the doctor’s face, then a nurse following the wife into the cubicle, where the body is behind the closed curtains… Scream…’ I had a card with pictures of faces with different expressions on them. I asked Bill to point to the expression that best matched his feelings, and he pointed to a face with the word SAD written under it. I talked to him for another hour before finally going home, and promised I would return and keep sitting with him and talking things over until he felt comfortable, and then we would agree on how the withdrawal process would eventually be conducted. ageing doctors

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It took another two days of discussions with Bill and his only relative – a sister – both separately and together. I promised Bill that we would watch very carefully for pain or shortness of breath, his two greatest fears from the lists we went through. Although his sister wasn’t close to him, she promised that she would sit with him while we withdrew the ventilatory support. He had a morphine injection in case of pain or shortness of breath. He would indicate if he needed more or less on a specially designed card. Finally I showed him the card with the faces again and he pointed to the face with PEACEFUL written underneath it.

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4 | The elephants’ graveyard

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arly each morning in the intensive care unit, the medical and nursing staff conduct what’s called the morning ward round. Each patient is examined and discussed. Results of investigations are looked at and a plan for each patient formulated. The ‘handover’ procedure on the morning ward round always starts with a brief history. For Gladys in Bed 4, it went like this: ‘This is Gladys. She is eighty-nine years old and was admitted for major cardiac surgery.’ Gladys was in a fragile state. While she was being lifted off the operating table after surgery, a large sheet of delicate skin was sheered off her right leg. It was carefully reapplied as one would apply wallpaper; a large bandage was wrapped around the whole leg and warnings were passed on to staff about her fragile condition. 39

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Age in itself certainly does not preclude active treatment, but Gladys’s situation made me despair about any chance of recovery. Her list of other problems – or co-morbidities – included severe heart failure, poor lung function, partial vision, mini-strokes, an aneurysm (a weakness of the major vessel in her body, the aorta) as well as severe osteoporosis or bone thinning, all contributing to leave her housebound. She was taking fourteen oral medications. Her chronic illnesses were almost certainly part of normal ageing; perhaps exacerbated by the fact that Gladys had once been a heavy smoker. Organs such as the heart, lungs, kidneys and brain all predictably deteriorate with age. The bones become weaker and more brittle, reducing mobility. Importantly, if admission to an ICU is required, older patients generally have fewer reserves to cope with any new medical problems, such as another illness or complications of major surgery. In the not too distant past, the cause of death recorded on many death certificates was old age. Ageing, wearing out of the tissues and organs and eventually dying, was acknowledged as a normal and predictable process. More recently, ageing and dying have gradually become medicalised; diseases to be treated. Sometimes, of course, life can be prolonged for a short time and symptoms controlled but the ageing and general wearing out of the body cannot be stopped. In Gladys’s case, what convinced her to have the operation was the promise that clearing out her blocked coronary arteries might relieve the crushing pain of angina she felt on minimal exertion, as well as helping her to feel less short of breath. The ward round consisted of two trainee doctors and the nurse caring for Gladys. We all exchanged glances during the 40

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handover story and pretended we were not part of the process which had resulted in such a frail person undergoing such a major operation; each of us I am sure knowing full well that we were part of that very process. I have feelings of increasing unease around the futility of sustaining life in certain of our patients in the ICU. Of the nineteen patients we had in the ICU on that morning ward round, there were seven patients, including Gladys, where continuing efforts to sustain life could be seriously questioned. The death bed has moved from the comfortable familiarity of the home to the science fiction of the ICU, surrounded by caring people who are also, nonetheless, strangers, inflicting the high-tech world of modern medicine in indiscriminate ways on people who may just want peace and dignity During the handover, another patient, Mary, had her story reduced to: ‘Mary – no change’. Mary, now sixty, had been almost totally paralysed for more than twenty years as a result of being hit by a speeding car on a pedestrian crossing. Her body was wasted and gnarled as a result of her quadriparesis or severe weakness in all four limbs. She was perfectly aware, intelligent and was not ready to die. She had been cared for in a nursing home since the accident and until recently could breathe by herself and hold a book with assistance. But, as happens with all of us, ageing had reduced her muscle power, gradually limiting her mobility and reserves of strength. Mary was now almost totally paralysed; but recently, her last muscle to be affected – the diaphragm – began failing. The diaphragm is obviously essential for breathing, and she was now totally dependent on a ventilator and spent her days watching television. The specialist staff and t h e e l e p h a n t s ’ g r av e ya r d

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equipment required to keep her alive could not be managed in a nursing home. There was no cure for Mary and she required twenty-four-hour care.

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Mary’s situation illustrates how radically the role of ICUs has changed in the few decades that they have existed. Initially, they were designed to support patients for the short term; to keep them alive while a reversible component of their disease was addressed. The average length of stay would be typically a couple of days. Large sums of money and specialised resources are devoted to ICUs for that specific purpose. However, Mary had been with us for six months. We had talked to her about the incurable nature of her condition. She knew it would eventually result in her death. It was Mary’s decision to demand support indefinitely, and she was certainly of sound mind. It is uncertain where we, as doctors, or for that matter, society, which ultimately 42

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bears the cost of such demands, stand with regard to being forced to meet everyone’s demands. Medicine has moved away from a paternalistic approach – increasing attempts to include the patient and/or carer in medical decisions are being made. During that process, it is often implied that the patient and their carers can make the decision about whether life-sustaining support should be given or not. While this may be politically correct, a debate around the implications and justifications has never occurred; it gradually happened without consideration of the ethics of prolonging life indefinitely, nor the cost to the community and the results of diverting resources away from other needs of society. On the surface, involving carers in important decisions when the patient is unconscious seems the right approach. However, it also depends on the way this inclusiveness is framed. For example, a patient in the general wards of a hospital might suddenly deteriorate. In the course of the discussion with relatives, the consulting physician might ask the relatives. ‘Would you like everything possible to be done?’ This can become a cruel cop-out and causes those of us who work in intensive care no end of anguish. The question itself infers that medicine has something to offer. Sometimes it does. Often, it doesn’t. In any case, few people when asked if they would like everything done for their relative would answer, ‘No, just let him go’. One of the problems is that, as a result of increasing medical specialisation, we do not have a detailed understanding of what each other’s specialty is about and exactly what we can and cannot offer patients. My colleagues know that they have sent t h e e l e p h a n t s ’ g r av e ya r d

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seriously ill patients to the ICU who perhaps they thought would die and they don’t, but they often don’t understand the limits of what we can offer. As a result, my specialty is often the source of the diagnosis of dying; that is, when intensive care has nothing more to offer. General practitioners and wise old physicians used to diagnose dying, as there was not much to offer when people became critically ill. Apparently, elephants know when they are dying and just saunter off to a certain secret place to join their ancestors. As a boy, I seem to remember watching one of those B-grade movies, supposedly set in Africa, in which white hunters spoke in longing tones about these ‘elephants’ graveyards’, which contained huge piles of tusks worth millions of dollars. When I first started practising intensive care medicine, I had to tout for business, convincing my colleagues I could look after their sick and dying. Within a matter of a few years, it seems that all our sick and dying come to intensive care on their way to their eventual death. Escalating care by placing the patient on machines and giving them more powerful drugs is usually accepted by society. Deescalating care can be tricky. My colleagues often haven’t mentioned to the patients or their relatives that failure of treatment is possible and there is a high chance of them dying. Many doctors feel uncomfortable speaking about dying and prefer to infer that there is hope by asking the relatives what would they like done, even when intensive care has nothing or very little to offer. The ‘very little’ has also become a big problem for modern medicine and society. The ‘very little’ is what many, understandably, hang on to. 44

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As a result of all this, the initial aim of sustaining life in the ICU while a cure takes effect has blurred into sustaining life for the sake of it; whether a cure is possible or not. Instead of a short, focused course of intensive care, as after a major road traffic accident, intensive care has, in too many cases, become a way of aimlessly sustaining life without any thought to the eventual outcome; whether this is what the patient would have wanted or whether society can afford the cost. Even those about to die of natural causes could be given a few extra hours, days or even weeks and months if they were supported by powerful drugs, expensive machines and skilled clinical staff. But would it really be in the patient’s interest? And should society be expected to fund it?

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Society and our politicians are probably not yet ready to begin a debate about actively withdrawing or withholding treatment. Intensivists don’t feel confident about exposing the dilemma. This debate would probably create such a furore that t h e e l e p h a n t s ’ g r av e ya r d

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constructive discourse would be lost in lobbying, outcries and entrenched positions. Meanwhile, it is not clear what exactly the rights of clinicians delivering such futile care are. Take the case of David, a forty-five-year-old man who had had an extensive cerebral haemorrhage, blood flooding through and destroying the delicate tissues of his brain. David had made no improvement in the four weeks he had been in the intensive care unit; he remained deeply unconscious and was not responding to any stimulus. However, his brain was not entirely dead, just severely damaged, leaving him in what is known as a persistent vegetative state. Everyone involved in his care agreed that he would make little or no further improvement, but his wife demanded that we continue care, which in his case involved high-level support on a ventilator. Anyone in a similar position might feel it is their role to exhaust every possible avenue in order to prevent the death of someone we are close to. As doctors, we feel obliged to continue to offer this care as there are no precedents about clinicians overriding the decisions of patients or their carers, and nobody wants to be in the position of setting that precedent in a prolonged court case. We asked our nurses to spend their entire working day looking after David. Sometimes junior doctors question us about the perverse role that ICUs have assumed. We lamely reply that currently we don’t believe we have any other choice but to give in to the demands of patients and their carers. It’s difficult to know where to go once we’ve exhausted all the different ways of trying to convince patients’ carers that recovery is highly unlikely. As a result of our insistence that there was almost no hope of any 46

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sort of recovery, David’s relatives maintained constant vigilance, arranging themselves in shifts over a twenty-four-hour period, documenting any changes in his condition or treatment. They knew exactly what drugs were being given and even the ventilator settings. Carers and patients demanding to have a life maintained in the face of hopelessness are becoming increasingly common. Even without relatives’ requests, it is becoming normal procedure in intensive care to escalate the level of patient support without stepping back and looking at the bigger picture – what are the ultimate chances of survival and what will be the quality of life if the patient ever leaves hospital? The sophisticated machines, life-sustaining drugs, procedures and equipment are often used in a non-discriminating way, with more attention paid to process than outcome. As doctors become more specialised, it is common to ask the opinion of each ‘organ representative’. Cardiologists are consulted on the heart; respiratory physicians asked about the lungs; and renal experts called in to advise on kidney function. In suggesting further tests and interventions, these highly expert doctors often do not look at the patient as a whole and consequently don’t address questions such as what are their overall chances of survival and what is the possibility of an independent life in the community after discharge? Rarely does a specialist say, ‘What are we doing here? What chance is there of a meaningful recovery?’ The fear of litigation is one driver for this reticence. Equally important is suggesting options that are possible rather than those relevant to the patient’s condition; discussing what can be done, t h e e l e p h a n t s ’ g r av e ya r d

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rather than what should be done; what is the most appropriate management for this particular patient with these particular conditions. We have ventilators to support patients whose breathing is failing, powerful drugs to support the circulation, and many other machines and drugs we can use to squeeze in a few more days of life. The ICU is becoming the human equiva-

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lent of the elephant’s graveyard, where an increasing number of us will end up as death approaches. It’s not just relatives making unreal demands on the health system and clinicians. Clinicians themselves are often complicit in refusing to face the inevitability of dying and death. For example, eighty-six-year-old John was refused surgery for an aortic aneurysm four years ago because it was thought that he wouldn’t survive the operation. (The aorta is the major artery in the body, carrying blood from the heart to most of the organs and tissues and an aneurysm is a major weakness, causing the walls 48

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of the artery to weaken and expand as a result of the pressure inside the vessel.) John was rushed to hospital after the aneurysm finally, and predictably, burst. In the heat of the moment, the surgeons on duty when he arrived in hospital operated, rather than simply making him as comfortable as possible. Ten years ago we would have either refused to take him into the ICU or would have withdrawn treatment earlier. Now he was left ventilator-dependent; his heart too weak to keep him alive; and lungs not functioning because they filled with fluid as a result of his failing heart and kidneys. Misha’s story is also sobering. Misha and his two sons were recent refugees from the former Yugoslavia. The boys were aged eight and twelve. Misha was a single father; his wife had been killed in the civil war. Three years after immigrating to Australia, Misha was found to have a brain tumour. During removal of the tumour, his brain was damaged, resulting in paralysis from the waist down. A short time later, he became unable to breathe sufficiently to maintain life. The neurologists and neurosurgeons were more optimistic than any other specialists, but even they, after six weeks, were coming to terms with the fact that Misha would not recover any further. Misha was totally conscious and we all thought it would be difficult to tell him he was about to die; then to turn his ventilator off. Of course, we would offer to sedate him to prevent suffering and to minimise the feeling of not being able to breathe. His sons did not want to tell their father; and even with an interpreter, we were not sure that he understood our explanations. We were all paralysed into inaction and he became ‘Misha – no change’ at the afternoon handover. t h e e l e p h a n t s ’ g r av e ya r d

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Margaret in Bed 5 was only sixty years old but had terminal respiratory failure as a result of heavy smoking. Her relatives wanted her intubated for her remaining days or weeks of life. On the other side of the unit, Paul had had such an extensive stroke that he had not regained consciousness after two weeks. Five years ago, he would not have been admitted to an ICU. Now we removed a large part of his skull to allow the brain to swell in order to avoid compression within the bony and unforgiving skull. There is little convincing data that patients improve markedly after such a radical procedure but because we can do it, we feel we must. As yet, we are accountable to no-one for the resources we use and no government has the courage to say

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that we cannot have more ICU beds in order to cope with this increasing demand. Patients dying for the lack of ICU beds make for irresistible headlines. When I first started practising intensive care medicine in the early 1980s, it seemed that we could prolong life indefinitely. Within a few years, we learnt we could sometimes prolong life, but that many of these patients died soon after discharge from the ICU. We also learnt that we often inflicted fatal complications during our treatment. Even now, the information we use to try to predict who will live and who will die is rarely 100 per cent certain; in truth not much more accurate than any experienced clinician’s judgment. We can rarely say with absolute confidence that a particular patient has no chance of recovery, and it is this small degree of uncertainty that patients and their loved-ones latch on to. Even if it is an infinitely small chance of survival, some relatives demand that everything possible be done until death is 100 per cent certain. Even in the case of brain death, when there is no doubt remaining, some relatives demand that ‘life-sustaining’ treatment continue until the patient’s heart stops or a miracle occurs. There is also the fear of litigation. Often, we simply focus on incrementally adding just one more small or even large intervention after another, hoping for a sign from heaven. Often the futility has been obvious from the moment the patient arrived in hospital and was put on the medical conveyor belt. For many reasons, it is difficult to stand back and state the obvious and easier to just mindlessly continue.

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5 | The myth of CPR

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ometimes word filters back to the intensive care unit about a patient who has died in an unexpected or unanticipated way. Nearly twenty years ago now, during a morning ward round, a trainee doctor informed us about a young woman of seventeen, who suddenly died during the night while having her fractured femur (the long bone in the upper part of the leg) put in traction. Susan had been a pillion passenger on a motorbike. Her boyfriend had been killed in the same accident. Today, we would probably send such a patient straight to the operating theatre to have the femur screwed together. But twenty years ago, Susan waited in the general ward until the orthopaedic surgeons had finished other surgery. The surgeons had informed the nursing staff that they would come as soon as they were free. When they 52

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did come, they were focused on the job immediately in front of them. It was late at night; they were probably tired after being on call the previous night and as a result of being in the operating theatres all day. While the orthopaedic team was putting Susan’s leg in traction in the general ward, about six hours after being admitted, she suddenly died. Her death was put down to a sudden cause: a large clot in the lung – but it was probably too early for this to have occurred; or a heart attack – but she was probably too young. I went to her post mortem later that day. There was no obvious cause for her sudden death but the answer was in her observation chart. The nursing staff had dutifully documented over the hours since admission that her blood pressure was slowly decreasing and her pulse and respiratory rate were gradually increasing. The nursing staff also documented that they were concerned that she was becoming drowsy. Easy to see in retrospect – she was bleeding to death under everyone’s nose. Fractures of large bones such as the femur or pelvis can result in serious but concealed blood loss; up to 2 or even 3 litres. She also had a fractured pelvis, so her total blood loss could have been 4 litres or even more. The average blood volume for an adult is only about 5 litres. There was an irony here. We were (and are) increasingly managing older people in the last few days of life with complex machines and a vast array of drugs, while younger ones are dying potentially preventable deaths on our general wards. Over the last twenty years, studies about potentially preventable deaths occurring in hospitals began appearing. Many of the deaths, cardiac arrests and patients who were deteriorating did so over the my th of cpr

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many hours. The system wasn’t working. Nurses would document the deterioration; untrained junior doctors would respond and do their best. Those trained the management of seriously ill patients were working in their own isolated areas, such as emergency departments and intensive care units, waiting for the seriously ill to be brought to them. As intensivists, we have become increasingly confident about our skills in keeping patients alive. We have gradually won the respect of our colleagues in the fifty or so years since intensive care units started. We have unique skills and complex machines that others don’t understand. There is even a sort of machismo around how sick our patients are and the complexity of support we offer. The greater the number of organs we support and the more complex the machinery we use to achieve that, the more legitimate and important our work appears. In the meantime, we are also exposing cracks in the general wards of hospitals, where patients fall through. Depending on which specialty a doctor has trained in, they may have been taught resuscitation skills at some time in their career. However, the senior specialist, under whose care the patient is admitted, is usually not in the hospital at the time of the arrest. This is probably fortunate for the patient as most specialists have not had the formal training in resuscitation up to the level of, for example, a paramedic; and even if they had, they would soon have lost those skills through lack of practice. Maintaining competence in one specialty is difficult enough but maintaining skills and keeping up to date with all the ad-vances in acute medicine and resuscitation as well is another full-time job. 54

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Doctors have become specialised in knowledge of a single organ or in a specific population of patients, such as geriatrics or paediatrics. Other specialists who may have skills in CPR and advanced resuscitation often only operate within their own territory, such as emergency departments or intensive care units. And so it is traditional that the younger medical trainees, trained or not, perform CPR and other emergency resuscitation roles. The general wards of a modern hospital can be dangerous places if you are seriously ill. Susan had fallen between the cracks. She needed to have been resuscitated much earlier if she was to survive. We weren’t to know it at the time, but Susan’s death in the early 1980s coincided with a new way of managing the seriously ill in all parts of the hospital, especially the general wards. As a result of her death, we have established ways of identifying those at risk, using simple measurements such as the pulse rate and blood pressure, which had so accurately defined Susan’s last few hours of life. Instead of waiting until the patient died or had a cardiac arrest, the nursing staff became empowered to call the cardiac arrest team earlier, when there was still hope of a good outcome. Few activities are so strongly associated with the image of modern medicine than the cardiac arrest team in action: young doctors with serious looks on their faces and a sense of urgency in their manner, racing around the hospital, looking and feeling important. They are in the business of saving lives. Someone’s heart has stopped and they have only minutes to get it restarted. The brain is the first organ to die, and some damage is already occurring the my th of cpr

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by about three minutes. The nurse who found the body should have already started some form of cardiopulmonary resuscitation or CPR, as it is commonly known. The nurse is doing his or her best, but anxiously waiting for the experts and for the instruction – ‘Thanks nurse, you can stand aside now’. Of all the rites of passage in becoming a doctor, there are few more exciting moments than being part of your first cardiac arrest team. You usually aren’t allowed to do anything on your first call, which is just as well, because, while you have had about the same basic training in CPR as a boy scout, you have had precious little training in the more complex areas of resuscitation, such as securing the airway with a tube in the windpipe; inserting a catheter into a large vein in the neck or chest; connecting the patient to a ventilator, knowing how to adjust the ventilator; and being familiar with all the life-saving drugs. How did the concept of resuscitation come about? Up until the late eighteenth century, the church frowned on mortals interfering with death and dying. Only the creator could give or take life. Most of the early attempts to restore life were for the near drowned. A Society for ‘Resuscitating the Drowned’ was established in Holland in 1767. Soon after, in Britain, a Society for the ‘Recovery of Persons Apparently Drowned’ was established by the Royal Humane Society for the Apparently Dead. Apart from possibly providing material for Monty Python sketches 200 years later, the words describing these societies and their aims were carefully chosen to avoid upsetting the church. For example, the use of the word humane to describe their society was a public relations coup. They were at pains to emphasise that they were not interfering with God’s work and that, in fact, it was a 56

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Christian act to rekindle the flame of a recently extinguished taper, as opposed to bringing a corpse back to life after the spark was totally extinct. The word resuscitation was deliberately used, implying reviving temporarily dead people, as opposed to reanimation, which implied raising the dead. To emphasise this point, the Royal Humane Society stated in its report of 1809 that, ‘in any case, resuscitation did not work after putrefaction had set in’!

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Now medicine could legitimately begin the business of reviving the dead – once they had been deemed only temporarily dead. Early interventions included administering tobacco smoke rectally, rolling the body over a barrel, suspending the person by their heels and tickling the throat with a feather. Even if there was a fraction of logic in some of these techniques, people would concentrate on the odd revival rather than the almost universal failure of all of resuscitation attempts. In that regard, little has changed; the tyranny of the anecdote often still governs medical practice. It’s better to be seen to be doing something when death suddenly occurs, rather than helplessly standing by. the my th of cpr

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The twentieth century saw further developments which, at least, were aimed at getting air in and out of the lungs of someone apparently dead. When breathing ceased, as in the case of drowning, these techniques were tried. If, however, the cause of death was due to the heart suddenly stopping, as a result of, for example, electrocution or a heart attack, it’s hard to imagine any technique aimed at restoring breathing would start a stopped heart. Techniques aimed at moving air in and out of the chest, such as Schafer, Silvester and Holger-Nielson were being taught as first aid to many community groups up until the mid 1960s. There were strong proponents for each one, especially on behalf of the Silvester and Schafer techniques, which vied with each other before the Second World War. The Schafer technique was frowned on by many more modest people as it involved straddling the patient’s pelvic region and pushing downwards on the chest, while the Silvester operators, in a more genteel fashion, knelt at the patient’s head and pulled their arms up towards the operator. 58

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Up until the Second World War, it was commonly taught that if you suspected someone of being dead, a mirror was to be held over their mouth: if the mirror fogged, they were breathing and therefore needed warming. If the mirror failed to fog, they were dead and needed application of either the Silvester or Schafer technique. The Holger-Nielson technique gradually replaced other techniques after the Second World War. It is difficult to understand how anyone survived following the use of any of these techniques, as it was clearly demonstrated

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in the late 1950s that we had all forgotten about adequately clearing the airway. There were notional recommendations about retrieving a swallowed tongue and clearing foreign matter from the back of the mouth but they weren’t very effective. No matter how much pumping and pushing went on, no air was going to enter the lungs unless the airway was clear, and almost no air entered the lungs with any of these three techniques. What we weren’t aware of then was that to overcome the problem of the tongue falling back and obstructing the airway in unconscious patients, the jaw needed to be lifted forward. Spouses sleeping next to snorers – who have partially obstructed airways, because they are partially unconscious – know that their partner needs to be turned on their side and sometimes to have their jaw lifted in order to stop the snoring. If techniques such as the Holger-Nielson were all doomed to failure, why did we mindlessly continue with them for so long? We were about to stumble on a technique that was simple, effective and based on sound physiology. Mouth-to-mouth resuscitation had been reported at least a century before the 1950s but was now shown to inflate the lungs much more efficiently than the Silvester, Schafer and Holger-Nielson techniques. By lifting the jaw forward, air actually entered the lungs. This was proven in medical students paralysed by drugs, in the days before ethical permission was required for research. In students assigned to the Holger-Nielson technique, there was a severe depletion of oxygen, to the extent that those medical students nearly had cardiac arrests, compared to the medical students assigned to the group having the newly developed mouth-to-mouth resuscitation. 60

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The next challenge was to get the heart going. During experimentation with defibrillators on the chest wall of anaesthetised dogs, the same researchers who had developed the jaw thrust and mouth-to-mouth resuscitation noticed that intermittent application of pressure on the defibrillator maintained the pulse and blood pressure of the dogs. This led to the use of external cardiac massage, which became the third and final part of CPR, now commonly known as airway, breathing and circulation or ABC. We now had a technique that could, in theory, maintain the basic functions of life by keeping the heart and lungs working. This is enough to keep otherwise dead people alive until more definitive treatment can occur. Like most medical advances, it took some time to take off. An interesting study was published demonstrating the successful use of CPR in patients. These were otherwise healthy people having surgery, whose hearts had stopped and were restarted with CPR. The circumstances in which the arrests occurred were somewhat overlooked and remain so to this day. The report was made at a time when anaesthetics could be dangerous and sudden deaths were not uncommon. Successfully resuscitating these patients was not the same as reviving patients who had bled to death or whose heart had worn out as a result of old age. Nevertheless, the CPR industry was born and quickly ran out of control. Initially, doctors were reluctant to share CPR with the community. After all, saving lives in such a miraculous way was a medical matter. The American Heart Association argued that CPR, especially cardiac massage, was a medical procedure. This didn’t make sense, as a layperson was far more likely to witness an out-of hospital cardiac arrest than a physician passing by. By the my th of cpr

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1970, however, community awareness and training in CPR had become commonplace and by 1990, the technique had become thoroughly embedded in the community with widespread education and compulsory posters in places such as public swimming pools. Laypeople who have completed a CPR course can now perform the procedure as well as, if not better than, most newly qualified medical students. The concept of CPR led to several other important developments. The application of the technique is usually not life saving in its own right. It maintains basic functions of life until definitive treatment can be delivered, including defibrillation, artificial ventilation or administration of drugs. These techniques usually require someone with medical training. And so the first ambulances with medical personnel were established, allowing rapid medical attention on the scene, as soon as possible after someone from the community had commenced CPR. Trained ambu-

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lance personnel or paramedics could do most things as well as, and in most cases better than, a doctor, and were used to working in environments more chaotic and difficult than a hospital emergency department. Apart from the odd electrocution or drowning, CPR was increasingly being used for people in the community who died after having a heart attack. There are many ways this can occur, but the two most common are firstly that the heart can just stop working because of the sudden lack of a blood supply, as a result of an artery supplying the heart suddenly blocking (a so-called coronary occlusion); secondly, the heart can fibrillate instead of efficiently pumping blood, usually also as a result of insufficient blood supply. CPR can be effective in both situations, but it is much easier to re-start a fibrillating heart with electrical shocks applied to the chest wall (or defibrillation) than it is to restart a heart that has just stopped stone-dead. Defibrillation, when available, has become an integral part of CPR. In fact, most authorities now suggest that defibrillation, when immediately available, should be applied before CPR. In some countries these defibrillators are freely available at railway stations, airports and even casinos. Even if performed optimally, CPR after the heart has stopped is often not successful in restoring life. After their first few cardiac arrest calls, medical trainees intuitively begin to understand that CPR is usually a ‘last rites’ ritual – a continuation of the focus of modern medicine on doing everything possible to restore and sustain life. Only about 15 per cent of patients requiring CPR in a hospital and approximately 1 per cent of patients who have arrested in the community and had CPR, survive to leave the my th of cpr

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hospital. And this dismal figure hasn’t changed since CPR was first introduced in about 1960. Moreover, these figures do not give any indication of what state the survivors are in. Many are in a coma or have severe brain damage. This is not the impression we get from medical programs on television, where success rates appear to be around 70 per cent. How did such a poorly proven intervention become a routine end to many people’s lives? While there are many articles about the anecdotal success of CPR, there are few extensive studies putting the success stories in the context of, for example, which groups of patients CPR is more effective in reviving. It is estimated that providing a hospital CPR service costs approximately $450 000 per survivor, making it one of the most expensive procedures in medicine. On the other hand, large research departments all around the world spend millions on determining the most effective number of chest compressions and artificial breaths that should be applied per minute; and whether drugs be given intravenously or directly into the heart; and what drugs and at what doses these drugs should be given. Thousands of dogs and other animals are sacrificed in these experiments. Even for the approximate 15 per cent of patients who survive to leave hospital, we know little about the eventual state of those survivors, nor about the ones who didn’t leave hospital. Were they left on ventilators or discharged in a vegetative state to some kind of institution? The CPR industry has moved a long way and is redefining what exactly is meant by resuscitation within an acute hospital setting, extending its boundaries for research and 64

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recommendations to meet the needs of the seriously ill before they actually have a cardiac arrest or die. The story of how to manage cardiac arrests in the community is slightly different. It must be very expensive to train so many in our society to perform CPR, although many of those trained and those providing the training are volunteers. Many cardiac arrests where CPR is attempted are sudden: young victims resuscitated after a sudden heart attack or a child rescued from a swimming pool, and this probably makes widespread community educational programs worthwhile.

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It may be that soon, hospitals will abandon the cardiac arrest team altogether, and develop a system whereby the right skills and experience are provided to the right patients at the right time. Whatever this system is, the response will also be able to deliver CPR in the rare case where a cardiac arrest suddenly occurs without any of the usual warning signs. the my th of cpr

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Just as importantly, we need to identify those patients where deterioration and arrest is part of a natural end-of-life process; where medicine has nothing left to offer. While palliative care is well developed for patients with cancer, it is less common for patients dying of other untreatable diseases. The reasons for the reluctance of doctors to be more honest and transparent about the end of life are complex. Many calls for CPR are to patients where further active treatment would be futile. The cardiac arrest teams become surrogates for making decisions about whether further treatment is warranted. This is obviously unfair for a team that may not have encountered the patient before. Because they haven’t enough information at the time, futile CPR may be performed and admission to the ICU may even follow to further prolong ‘life’. Hospital doctors are notoriously reluctant to admit that there is nothing more that can be offered in terms of improving a patient’s medical condition – either to the patient or to themselves. Consequently, euphemisms have been developed by cardiac arrest teams; often together with the attending nursing staff, in a sort of conspiracy of inevitability. It’s often obvious to junior doctors and attending nursing staff that certain patients are just plain dying, but it is unwritten law that these matters may not be discussed with the specialist in charge. Instead, various codes have been developed in the event of a cardiac arrest call to these patients: a ‘show’ code; ‘slow’ code, or ‘ Hollywood’ code are some of the words used to identify these ‘walk, don’t run’ patients. Various cryptic initials or purple dots have been used to identify patients where not only CPR but any further active treatment would be futile. Just over twenty years ago, a 66

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small step in the right direction was taken with the introduction of ‘Do not resuscitate’ (DNR) or ‘Not for resuscitation’ (NFR) orders. There is, however, a most glaring oversight here – if CPR rarely works in the terminally ill, why pretend that not delivering it makes any difference: the DNR order, in many cases may be superfluous and unnecessary. At most, it’s probably a way of beginning discussions around end-of-life issues. Intensive care staff know that patients rarely die suddenly when they are being monitored and supported with machines and drugs. They gradually fade away when the last vestiges of life have disappeared, usually in a predictable and orchestrated way. This is not usually the case on general wards where often the prospect of dying naturally has not been discussed. CPR is a barely successful technique in hospital patients at the best of times, but in the terminally ill it is almost universally futile. And yet the designation of a DNR order is carried out with great solemnity and seriousness. Special forms are filled out and long discussions are held with patients, or if they are otherwise incompetent, with next-of-kin. Such is the power of the myth around CPR that physicians rarely admit to themselves, or to patients and their relatives, that what we are discussing is dying. The use of DNR orders implies that CPR is successful; that we are discussing withholding a treatment which is effective; that we are offering the gift of life as opposed to calling it a day. Whereas what we are probably beginning to address is that continuation of active treatment would be futile and the object of care should change to one of palliation; that we should begin to discuss the mechanics of withdrawing and withholding the my th of cpr

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treatment as an active decision and not pretend that the DNR order has any real meaning. It is not addressing the real issue. Armed with knowledge about the poor success rates of CPR and the lack of clarity around DNR orders, we should examine medical guidelines and the way the media portrays the issues. Doctors have been accused of being paternalistic and authoritarian by withholding potentially life-saving CPR. While doctors can, of course, be paternalistic and authoritarian, what they are doing with regard to DNR orders is almost the opposite and equally indefensible. Far from being paternalistic, the doctors are being naïve and ill-informed. They are, in most cases, continuing active treatment in the face of futility; with little self-insight, let alone being honest with the patients and their relatives. They are mindlessly sustaining life, as opposed to prematurely ending it. Nevertheless, the charge of inadequate discussion with patients and relatives stands. In order to make sense of these media reports, it is crucial to differentiate between DNR orders and withholding and withdrawing active treatment. The first is really a non-order; whereas the latter addresses the real issues around end-of-life care. One cannot blame the media for not reporting these issues accurately, when policies around DNR are embedded in most hospitals around the world. For example, many policies have a statement along the lines of: ‘in the absence of a clearly recorded DNR order, the presumption must be that full resuscitation should be attempted’. In the defence of medicine, the acronym DNR has been replaced by DNAR (Do not attempt resuscitation), which may be a small step in acknowledging that any attempts are unlikely to be successful. There may, of course, be 68

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rare cases of accidental drug administration or other such misadventure, where resuscitation would, of course, be indicated and successful. The need for CPR in a hospital is often a marker of serious and systemic problems in the hospital. Many cardiac arrests could have been potentially prevented altogether with an appropriate early detection and response system. The life of the young pillion passenger, Susan, could have been saved had we had such a system in place. Her tragedy has since led to rapid response systems to deteriorating patients being implemented in many parts of the world.

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6 | An interesting case of blue feet

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he morning ward round presented an old fashioned diagnostic challenge. Keith was a seventy-year-old man who had been transferred in a seriously ill condition from another hospital. During a routine operation for removal of a skin lesion, things had gone wrong. The anaesthetist had noticed Keith’s heart was beating irregularly. His blood pressure was at one moment very high, then very low. At the end of the operation, he had needed high doses of drugs, such as adrenaline, to maintain his blood pressure. The surgeons also noticed that his feet and ankles were so blue they were almost black, suggesting that the tissues were suffering a severe lack of blood or oxygen. But when the doctors checked for a pulse on his ankle, it felt normal, strong but reflect70

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ing the irregularity of his heart, so the blood supply from the main arteries was fine. We sometimes see this phenomenon when the major arteries are working well but the very small blood vessels are diseased, such as with diabetes or severe infections. The heart looked like the culprit: perhaps Keith was having a heart attack, unluckily and coincidentally, during his operation. But his ECG and blood tests ruled out that possibility. Other measurements of heart function such as the echocardiogram initially showed diminished function, but this was improving by the time he was transferred to our ICU. We eventually decided his heart was an innocent bystander in the context of some other catastrophe. This was what we call an interesting case. If you ever you become a patient, always beware when your disease is labelled ‘interesting’, as it usually means no-one has any idea what’s wrong with you. The more formal word for not knowing what’s wrong is ‘idiopathic’, but ‘interesting’ is worse. It often means idiopathic but with a bad prognosis. The words are used when the patient doesn’t fit in with the way medicine operates. The art of medicine uses a framework that has been around for several centuries. Firstly, you take a history from the patient about their illness, listening for tell-tale symptoms; then you examine them in the light of that history, looking for signs of disease; then collect your thoughts and come up with a provisional diagnosis; and finally you conduct appropriate investigations in order to confirm a definitive diagnosis. Despite the fact that few patients conform perfectly to this logic, it is probably a reasonable framework on which to pin the art of medicine. an interesting case of blue feet

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The undergraduate medical course in my day was divided into two distinct and disengaged stages. The three preclinical years included subjects such as biochemistry, anatomy and physiology, taught to us by scientists employed by the university. Most of them were bad teachers but probably good researchers. Then we moved into the clinical years, taught by proper doctors. They oozed prestige, power, wealth and confidence. They taught us how to practice medicine, which seemed almost totally divorced from the underpinning science we had learnt in the previous three years. Correct diagnosis was the key and where the one-upmanship resided, possibly because there was little in the way of treatment up until just after the Second World War. Treatment was of secondary importance, compared to the diagnosis. Many patient problems such as loneliness, despair and pain didn’t seem to fit anywhere in the clinical practice I was taught. How to deal with dying wasn’t mentioned at all. The height of achievement in medicine was, and still largely is, to make a rare diagnosis; one of those ones that are at the bottom of the list of causes for medical conditions. As a fourth year medical student, I came up with a diagnosis of Kwashiorkor, a disease found in developing countries, as a result of starvation. The woman I diagnosed was, in fact, wasted as a result of something more common in developed countries: cancer. Medical legends are based on those astute physicians who can make the rarest and most unlikely diagnosis. Mine was rare, in fact so rare as to never have been reported in my country. Urban myths and legends grew out of wise physicians who have made a rare diagnosis. One I remember involved a doctor 72

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who diagnosed a blocked bile duct by looking at the shininess of his patient’s fingernails, as a result of scratching skin that had been irritated by unexcreted bile salts being deposited in the skin. One of my student colleagues on hearing the story wondered why he just hadn’t noticed the fact that the patient was very yellow or jaundiced, as a result of the obstructed bile duct and why the patient had scratched himself with the backs of his fingernails instead of the tips. My colleague had missed the point. We are creating our own mythology here, like football fans talking about the pass that won the match. It’s meant to be the subject of legend, not logic.

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The rare diagnosis was, and in many ways still is, the currency of reputations, the basis for fame. Another one, probably also an urban myth, was the doctor who felt an enlarged liver in someone with a glass eye. The connection was a rare tumour which had occurred in the eye, necessitating its removal and replacement with a glass eye, followed some time later by the spread of the tumour to the liver, causing its enlargement. an interesting case of blue feet

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You can picture this wise man in the pin-stripe suite feeling the enlarged liver, noticing the glass eye and delivering the pearls of wisdom to the surrounding medical students and other members of his team. The setting sounds more like a Sherlock Holmes story from the nineteenth century. All the subtle clues distilled into a previously unspecified culprit on the final page. All sorts of irrelevant leads had, in the meantime, distracted the incompetent underlings. However, as we all know, the majority of murders occur in the home and the suspect is obvious. Similarly, most diseases are obvious. Effective practice of intensive care medicine is about teamwork rather than individual brilliance. The skills of a modern doctor are now more about recognising the importance of complexity of the problems that patients usually present with, rather than reducing the illness to a single diagnosis; and integrating issues such as the many practical aspects; for example, how care will be provided at home. Back at Keith’s bedside, we were still at a loss to explain his blue feet and wondered whether he had mistakenly been given a powerful drug such as adrenaline during his operation, which caused the blood pressure to rise and blood flow to the tissues to either cease or be markedly reduced. We checked: he certainly had been given adrenaline, but only after his feet had turned blue and his blood pressure rose. It was then that it clicked, standing around talking among ourselves about possibilities, excluding this, suggesting that and suddenly, yes, it had to be – a rare tumour, called a phaeochromocytoma, can produce large amounts of adrenaline and often 74

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first presents when a person is having an operation. There was the general excitement associated with stumbling across such a rare disease. (Excitement in an ‘interesting’ case is usually confined to doctors and not shared by nursing staff. Nursing staff pay lip service to the general accolades associated with the identifier of a rare disease but rarely get involved in the discussions around who was the first one to think of it, who noticed the elusive sign or who ordered the defining investigation.)

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Keith was, in due course, scanned and investigated from head to foot and sure enough, a large phaeochromocytoma was eventually found above his right kidney. The story spread rapidly on the hospital grapevine. The physicians, especially those who were asked to consult on the case and who hadn’t come up with the correct diagnosis, showed more than the usual interest and probably secretly wished they had stumbled across the cause of the problem. an interesting case of blue feet

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It took another week before Keith was weaned off the ventilator and all the drugs that were supporting his heart were withdrawn. Other drugs were, in the meantime, commenced to counteract the effects of his adrenaline-producing tumour. I couldn’t resist telling the story to the assembled ward round of the man who had a phaeochromocytoma in his bladder and got a severe headache every time he urinated, as a result of his blood pressure soaring when his bladder contracted around the tumour as the bladder emptied. Then I admitted to myself that I hadn’t seen any such case and was falling for the usual trap of disseminating urban myths and legends associated with the cult of rare diagnoses. Two months later, Keith, looking extremely well, was wheeled into the ICU to thank the staff. His wife, Joan, assisted him, as he had had both feet amputated about halfway along each foot as a result of the severe gangrene that he had suffered as a result of the prolonged lack of blood flow. His wife wanted to show him the bed that he had lain in for almost a month. She also wanted to convey to him some aspects of her own struggle as she sat at his bedside every day, not knowing whether he would live or die. He wanted to make sense of the missing month in his life and what had happened after he was anaesthetised in a small rural hospital for a minor procedure and woke up with half his feet missing and connected to machines in a large city hospital, 300 km away. Behind the technology and life-saving activities associated with ICUs is a personal bleakness that many patients never recover from after they leave hospital. The effect on the psyche can be debilitating. A large part of their life has disappeared. 76

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There is an almost total lack of recall of their time in the ICU. The memories they do have are distorted by anxiety, depression, delusions and nightmares. There is a high incidence of relationship breakdown and alcohol or drug abuse. A significant number develop post-traumatic stress disorder. Things are not much better for relatives. Many are now locked into constant care for this physically damaged and emotionally disturbed person, who, even without brain damage, is significantly changed and tormented by nightmares and delusions, the source of which the victim cannot locate. The priorities of health care are about saving life, not about exploring the issues which arise after recovery from life-threatening illness; not about providing the appropriate support for those who have suffered serious illness, nor, and just as importantly to those who are destined to spend much of their lives looking after them.

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7 | And the blood goes round and round

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he twenty-seven-year-old patient in Bed 3 had developed blood poisoning as a result of shaving the pubic hair adjoining her thighs and then jogging 10 kilometres, presumably creating a suitably warm, moist environment for bacteria to replicate and enter her body through a graze caused by the shaving. Even cleaning your teeth can result in minor abrasions in the mouth, allowing some of the bacteria which live there to directly enter the bloodstream. Anyone with already damaged heart valves is particularly prone to infections as a result of these transiently visiting organisms, before the body’s own immune system has had time to detect and kill them. Kelly, in Bed 6, was also being treated for blood poisoning or bacterial endocarditis, the name given to these heart valve 78

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infections. She previously had normal heart valves but was now in intensive care as a result of extensive destruction of both her heart valves. She was an intravenous drug user who had used a non-sterile needle – probably shared. Both valves were now extremely incompetent. Blood, which would normally flow forward when the heart’s major chambers contracted, now flowed backwards. Kelly required surgical replacement of both valves with artificial ones. Unfortunately, this couldn’t be done immediately because a piece of damaged heart valve had broken off and had been pumped by the left ventricle into her brain, where it had caused a stroke. As a result, she was confused and disorientated. The surgeons didn’t want to operate until six weeks after the stroke had occurred because the piece of valve lodged in the brain was infected, resulting in a small abscess, which would be prone to bleeding when she was put on heart–lung bypass in order to perform the operation. As everyone now knows, the blood circulates around the body, providing oxygen and fuel to the cells, while at the same time removing carbon dioxide and waste products. It’s hard to imagine that William Harvey goes down in history so emphatically as the man who discovered this. It seems so obvious. Like all remarkable landmark discoveries, such as Darwin’s theory of evolution, it often does seem obvious in retrospect. Harvey did experiments such as placing a tourniquet on the upper arm and observing the veins of the lower arm engorge. The blood under pressure in the arteries could force its way under the tourniquet but then became trapped in the low-pressure veins. By meticulous anatomical dissection, he a n d th e b loo d go es rou n d a n d rou n d

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distinguished between arteries and veins. The arteries take bright red, oxygenated blood away from the heart to sustain the body. The veins carry the deoxygenated blood, now a bluey-black colour, back from the tissues. The heart is simply a pump pushing the blood around the miles of vessels and then pulling it back again. Larger arteries, such as the aorta, are about 2 cm wide and have muscles in their walls, enabling them to distend and absorb the initial pumping pressure of the heart. The arteries branch and gradually become smaller in diameter, eventually becoming arterioles. The arterioles branch many more times, becoming

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narrower all the time, until they form capillaries. The capillaries are like the lanes in a car park and the cells are like car parking spaces, supplied with oxygen and fuel by the blood in the capillaries. The blood on the way back around the body is first carried by the capillaries, then slightly larger vessels, the venules, and finally back into the heart via large veins such as the vena cava. The vena cava is the venous equivalent of the aorta and runs alongside it, through the abdomen, into the chest and back into the heart. The circle is completed. The heart is a busy, relatively small, extremely muscular organ. Unlike most other indispensable, so-called vital organs such as the brain, the heart does not get a chance to rest. It must operate from soon after conception until death. It represents life itself. Oxygen gives blood its bright red colour and it is this lifegiving blood, which, after returning from the lungs, is ejected from the left ventricle to begin its journey around the body. It then returns, now a dark bluey-black because its oxygen has been removed. The blood then flows from the large veins into the right atrium, a smaller, thin-walled storage chamber in the heart. (The word atrium originally described a waiting area in a Roman house.) The right atrium pumps its stored volume into the right ventricle which then pumps it into the lungs, where it is oxygenated, returning to the left atrium, the small chamber sitting above the left ventricle. Then the left atrium pumps its volume into the left ventricle, which then pumps it to the waiting and eager cells. And so the two separate and dependent circulations continue until one day, due to a whole host of reasons, they stop, and as a result you usually cease to exist, except of course if a n d th e b loo d go es rou n d a n d rou n d

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you are supported on a heart–lung bypass machine, have cardiopulmonary resuscitation or some other assist device such as an implanted pacemaker. Lining the circulatory system are millions of endothelial cells, which are irregularly shaped and form a pattern similar to paving stones. They are tightly linked to prevent leakage of any fluid, except that required to sustain life within the cells. The smallest conduits, the capillaries, are where fluid and gas exchange occurs. They are only one endothelial cell thick. The largest vessel, the aorta, has walls about 3–4 mm thick, with the same lining of endothelial cells, but with many other cells giving it elasticity and strength. The low pressure inside the capillary and the infinitesimally small gaps between the endothelial cells together ensure that only a small amount of fluid leaks out in order to continually bathe the cells with nutrients, equivalent to the sea water that surrounded our uni-cellular ancestors. The fluid between the cells, now containing waste products, finds its way back into the circulation through the capillaries and small veins. The final part of this beautiful system is the lymphatic circulation, which picks up any excess fluid around the tissues and separately transports it back to the circulation. You don’t hear much about the lymphatics these days. It’s not a fashionable area of research; it doesn’t belong to any single organ specialist, and clinicians no longer do much research in the area. Nevertheless, the lymphatic circulation becomes the hero, for example, after a major operation when we invariably become over zealous in prescribing too much intravenous fluid and the lymphatics have to mop it up. 82

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The heart usually ensures smooth and predictable blood flow around the body. The system can be severely disturbed when problems occur with the four valves within the heart. Unfortunately, because the valves represent the only intrusions in the otherwise tubular circulation, blood flow can be chaotic around them, forming small eddies or currents. The combination of the shape of the valves and the irregular flow can sometimes allow any circulating bacteria to settle on the valve. They then replicate and make a home there, eventually destroying the valve tissue. Where do the bacteria come from? They may break through the usual defence mechanisms as a result of infections anywhere in the body. Before antibiotics, it was relatively common to die from blood poisoning. Pathologists, performing autopsies on patients who had died of blood poisoning, and who accidentally

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grazed or cut their own skin during the procedure, would also often die of the same blood poisoning. I first saw Kelly three weeks after she had developed the bacterial endocarditis on her valves and the subsequent abscess in her brain. She was very thin and, at thirty-nine years of age, looked more like fifty. As the week went on, I noticed her partner, a man of about forty, was at her bedside for at least three hours every day. He was also an intravenous drug user who talked openly about robberies he had committed to support both his own and Kelly’s habit but drew the line at Kelly’s occasional prostitution, when money was a bit short; suggesting it was unnecessary and dangerous. Kelly’s father also visited her every day. Both men seemed to get on well together and were equally concerned about her condition, her failure to make much progress and the dangers of the impending operation. Both men had bad and missing teeth and faces that looked to me to be lined by alcohol and tobacco abuse. Nevertheless, when visiting her in the ICU, they were always sober, considerate and genuinely concerned about Kelly. It was costing at least $3000 a day to treat Kelly in the ICU, far more than what she had ever required to support her drug habit. Unless she decided to stop using drugs, she would almost certainly continue to be addicted after discharge from hospital and it would be very difficult for her to be compliant with the complex array of medications necessary to maintain her two new valves. It was going to cost over $100 000 to get Kelly back into the community. Some in our community may wonder about the futility of this exercise, but I have never known any health care worker 84

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in Australia to make a decision about a patient based on their class, prospects or general acceptability. Some would consider our treatment strategy for Kelly to be a waste of increasingly scarce public resources, which could be shifted to more effective preventative strategies aimed at people like Kelly at an earlier time in their life. Others would argue that making a judgment as to whether to continue to actively treat Kelly or not, based on social and economic factors, may irreversibly change the relationship between medicine and society. Another argument could be that there was a reasonable certainty that Kelly would never regain her normal intellectual capacity and probably would not be able to cope with such a burden of illness requiring the level of careful monitoring and treatment needed in her care. Books, PhD theses, commentaries and public debates have been devoted to such issues. I also had the personal challenge of confronting my own prejudices about exactly what a drug addict is. Like many people, my knowledge comes mainly from the media. I imagined Kelly’s life being devoted to the next hit, resulting in relationships with friends and relatives being dysfunctional or non-existent. I therefore found it hard to understand the daily visit by her ten-year-old niece. She would be dropped off at the ICU by her grandmother, Kelly’s own mother. She would reach up and press the bell at the imposing ICU doors, be identified on the closedcircuit television and then allowed in. She would put on a plastic apron and pull up a chair next to Kelly. Then she would wet a flannel, wring it out and wipe Kelly’s brow, while reassuring her with kind words. She would tell Kelly all the news, hold her hand, and ask us about her auntie’s progress and whether she was a n d th e b loo d go es rou n d a n d rou n d

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feeling pain. After about two hours and as evening drew in, she would leave to catch a bus home. I had seen other ten-year-old children visiting patients in the ICU. Even those from families which resembled those idealised in television sitcoms usually had short attention spans and, after checking the surroundings out, were usually anxious to move on.

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This girl showed genuine concern for her auntie. Where did that come from? Was it totally one sided, coming from a very special and generous spirited young girl, or did her auntie offer love and warmth in return? And why were her father and partner so obviously devoted to her? Are there drug addicts who are sensi86

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tive and warm people? I didn’t know. I only had images from the media. The words drug addict conjured up certain images in my mind, like the word terrorist. The niece’s devotion and obvious love brought up a lot of questions for me and made me rethink some prejudices. Was it the Kelly they used to know that made them visit? It was unlikely to be simply obligation. These visitors did not have any private means of transport and travel to the hospital in an area where public transport was very limited would have been challenging. Later that day, I walked past the methadone clinic, situated in the hospital grounds. I saw down and outers in terms of their appearance, but I also saw young families, friends, pets and genuine communal interaction. I needed to examine my attitudes and make room for images other than that of the deserted and lost soul dying in the gutter from an overdose. I didn’t want to generalise or romanticise about what IV drug users were like, I just wanted to know more about who they really were. Maybe I needed to look at the rich Englishmen of the nineteenth century who apparently led productive and long lives, despite being opium addicts, when the only variable was drug addiction, not the funding necessary to support the habit. Did they function in their lives? Did their families and friends love and care for them as Kelly’s did? Could you be addicted to drugs and emanate enough warmth and affection for people to inspire them to be so devoted? The respectable-looking brother of the patient in the bed next to Kelly’s, on learning of his sister’s inevitable death, wanted to know who would pay for her funeral, as his sister’s husband had died two years earlier. He complained that his sister’s two young a n d th e b loo d go es rou n d a n d rou n d

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daughters wouldn’t be able to afford it and was afraid he might have to bear the cost. When I asked him if he had discussed this issue with the daughters, he said he didn’t have their telephone number and wouldn’t know how to contact them. I ruminated with some of my nursing and medical colleagues on the obvious love of the young niece for her Auntie Kelly. Some were angry that the niece was allowed into the intensive care unit by herself at such a young age; others said she had yet to gain insight into the reality of what her auntie was really like. A common maxim in medicine is ‘that more is missed by not looking than by not knowing’. I was left with things that didn’t conform to my preconceptions but I didn’t want to reject what I observed just because of that.

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8 | Orchestrating deaths

M

edical colleagues from other specialities in the hospital elicit different reactions when they step into our ICU. Hospitals are made up of fiefdoms and clinicians are territorial about their own patch. Emergency physicians come up to check that we genuinely do not have spare beds to accommodate patients from their overcrowded department. Anaesthetists are more ominous, as they know how to care for the seriously ill, and they only approach you after something serious has gone wrong in the operating theatres. Surgeons supposedly want to discuss their patient with you, but they invariably have a definite plan of their own. They expect the ICU to play a part in the plan but not to become too overbearing or assertive in the process. They see that as their role. Physicians also want to discuss their patient, 89

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but they are often vague about what they think intensive care can offer. For them, the ICU is a black box about which they have little understanding, except to know that some patients who they think would have otherwise died, emerge alive. Physicians sometimes miss the big picture and have become so specialised that they can’t see past their own organ’s well-being. Obstetricians cause the most alarm, as they care for young women with some of the most serious illnesses. Childbirth can still be a dangerous process. Obstetricians are usually innocent of the seriousness of the situation and believe that with all the technology we have, and the underlying good health of most young mothers, recovery is inevitable. And then there are haematologists: they are specialists in blood-related disorders, including leukaemias. The have accurate facts and figures concerning the course of these illnesses but only when everything, otherwise, goes according to plan. They give cytotoxic drugs, which not only kill cancer cells but also other cells such as the hair and those in the bone marrow. Their knowledge of the prognosis of patients receiving chemotherapy is based on large populations all treated in the same way. However, within that group, there is always a certain percentage where treatment fails, and they die. Haematologists often overlook this minority. Chemotherapy arrests the growth of the white blood cells in the bone marrow and these cells are crucial for fighting infections. Severe infection can overwhelm the body’s depleted defences when they are at their most vulnerable. Against all hope, the haematologist sometimes separates the two issues: the strong evidence for a good outcome if everything goes well, but the often dismal outcome if infection supervenes. Some 90

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patients, of course, respond well to antibiotics, while the body’s own defences get themselves sorted out. In theory, both the severe infection and the underlying leukaemia can and usually do respond well to modern therapies. However, the two together can be a lethal combination and a new set of facts and figures applies. Almost all patients with the combination of a haematological cancer and severe infection die. Haematologists are strong advocates for their patients, who are often young, and whom they have got to know well over many months or even years. Their pleas for admission to the ICU are invariably along the lines of ‘just get them over this temporary setback and then they could live for x more years’. They quite understandably remember the rare occasion when we do succeed and not the many failures and prolonged suffering that patients have to endure during this dying process. So it was with Alexander, a young man with leukaemia and severe infection. Our hearts sank when he was transferred from the haematology ward into the ICU isolation room. He was emaciated, with only a few wispy, sickly looking hairs left on his head. His eyes seemed over-large in his gaunt face. He was full of fear and apprehension as it was explained that we would be putting cannulae in his arteries and veins, putting a catheter in his bladder, a feeding tube into his stomach and connecting him to various monitors. Next, we performed every possible test in the book, looking for an organism (usually bacteria but sometimes fungi) that was causing the infection. Identifying offending organisms in these circumstances is so rare that it becomes the stuff of legends, but that never stops us trying. In any case, the treatment o r c h e s t r at i n g d e at h s

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invariably involves a ‘shotgun’ approach with antibiotics, covering everything possible, despite constant warnings in the lay and medical press about the increasing problem of antimicrobial resistance. It’s a reflex that is hard to stop, fuelled by statements such as ‘He/she is only young’; ‘What if it’s one of the rarer organisms’; and finally, towards the end, ‘What if it’s an organ-

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ism that we have caused to be selectively bred out, as a result of our previous antibiotic overusage’; in which case we need to start more sophisticated antibiotic cover, otherwise innocuous organisms such as fungi become life threatening. They have thrived in 92

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an environment devoid of the bacteria, which have succumbed to our antibiotic blitz. Alexander’s parents were in Greece. His brothers and sisters and friends conducted a twenty-four-hour vigil, talking about things that teenagers talk about; sharing their exploits and gossip; keeping the conversation light, adding humour and discussing what they would do when he got out of hospital. However, they must have known from the general state of his body and the fear in his eyes that he would never leave hospital. The nurses knew it and, when pushed, the doctors also knew it. We were all paralysed by the perverse complicity of giving hope in the face of obvious hopelessness. Eventually, his sister spoke to us about his chances and pushed us until I agreed there was ‘almost no hope’. The problem relates to what is ‘no hope’ and what is ‘little hope’. ‘Almost no hope’ is a medical way of covering your back in case a miracle occurs. Nothing is 100 per cent certain in medicine, apart from proven death. While the phrase ‘almost no hope’ is used by doctors to protect their reputations in a profession where there is no absolute certainty, it is important that relatives don’t misinterpret this as ‘some hope’. In other words, we must all press on until there is ‘no hope’. There is ‘no hope’ only when death occurs. But you can understand how doctors striving to protect themselves can arouse cruel expectations in relatives. Our drugs and machines sometimes enable us to prolong the dying process for days, weeks and even months. There comes a point during that process where death is inevitable, but it is difficult to define that point exactly. The relatives are usually the first to see it, despite the charade of equipment and machines. o r c h e s t r at i n g d e at h s

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The nurses then know and finally the doctors admit defeat. It is part of our training and focus to push on regardless, utilising our knowledge about sustaining life, rather than accepting, as our predecessors did, the inevitability of death. Alexander’s sister was able to read between the lines and put it to me after the morning ward round that Alexander wanted to go home to die. But he didn’t know if that could be organised. Death rarely occurs suddenly or unexpectedly in the ICU. The dying process can be orchestrated in terms of its timing, according to the demands of the health care providers and the needs of the patients. We can even maintain function in some tissues while others are beginning to decompose. There are fine lines between orchestrating the dying process, prolonging life and saving life. Intensive care medicine straddles all three. The boundaries are usually indistinct and therefore subject to different interpretations by both the givers and receivers of medical information. Sometimes, after explaining that a patient will die soon, the relatives ask if it’s possible to keep them alive until a relative or friend arrives from interstate or overseas. However, this is where you find the ambiguity: if you agree to keep the patient alive for twenty-four hours longer, it can be misinterpreted that you can keep them alive indefinitely. By simple deduction therefore, if we have control over living and dying, life must be preserved. If you agree to continue treatment based on a relative’s special request, you have to make it clear that you will do your best to keep the patient alive until the relative or friend arrives, but emphasise that the patient is dying and the process can be taken out of your control at any time. We can tem94

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porarily maintain ‘life’ until dying appears inevitable. After that, we can keep some vital functions supported until they just stop, despite all our attempts. The difficulty is explaining why it is pointless to continue to maximally support the body until things stop of their own accord, hours or days later. Life-support devices and drugs were not initially designed to delay the natural dying process. The process of dying, while not subject to indefinite postponement, can these days be protracted, often in a cruel and mindless way, by providing ventilatory support and keeping the heart going with a combination of drugs and machines. If the lungs can be supported by a ventilator and the circulation kept going, using mainly drugs to keep the blood pressure up, the tissues in the body can be bathed in oxygen and nutrients, at least temporarily. Herein lies the issue involving the rights of individuals to demand that ‘life’ be maintained; the rights of attending clinicians not to be forced to deliver futile care; as well as the rights of society, which is left ultimately paying the enormous cost of prolonging life inappropriately. The dying process, in the short term, can be adjusted to the relatives’ needs. There are those, who on hearing that death is imminent, want to say their farewells and leave, remembering the patient looking (we hope) at peace and pain free. Many are afraid of death and the imminent image of seeing their loved one as a corpse. Others want to sit at the bedside, talk to the patient, and hold their hands while they die. Of this group, some may want to be included in the mechanics of withdrawing medical support; others want to concentrate on their loved one. We often turn off the monitors, as relatives might follow the staff example o r c h e s t r at i n g d e at h s

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and watch the progress of death by observing the screens above the bed. I liken our service to a funeral parlour, where you can choose, for example, the type of service, size of casket, speeches and songs. We can offer rapid deaths for relatives and friends who want to leave early and remember the person in their own way. This is simply achieved by withdrawing and/or withholding treatment; both acceptable practices in most countries when death is inevitable. Up to 90 per cent of patients in intensive care units die as a result of withdrawing and/or withholding treatment when it is generally agreed that there is no hope of survival. We can often delay this process until the last of the relatives have arrived. We can accommodate large numbers of many cultural groups, each with their different songs, prayers and chants. There is sometimes screaming and wailing and at other times quiet weeping. We have become better at accommodating the wishes of relatives and friends of the patients, or the patients themselves if they have left instructions. We explain that, while we can do no more for their loved one, we can conduct the dying process around their expressed and perceived needs. Alexander appreciated the brave and cheery faces his friends put on but he was ready to die on his own terms. Being pressed by Alexander’s sister, I admitted that ‘little hope’ meant ‘no hope’, but felt vulnerable and exposed using those words – haunted in the very back of my mind by the one in a million chance of something happening that was not in any textbook: the infinitely small uncertainty that paralyses relatives and drains the economies of nations. The sister thanked me; then spoke to Alexander’s friends 96

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and her parents. The parents, who were still in Greece, reluctantly accepted what they knew to be inevitable. The sister had to remind them that they had promised him that he would be allowed to go home and die if treatment failed. We then had a logistical problem. He lived hundreds of kilometres away, was on many drugs and was supported with a ventilator to assist his breathing. The only realistic way to take him home was by helicopter. We had to run the film backwards. Cut to the scene where a patient is being initially attended by paramedics and doctors in his home after becoming ill. He is transported by helicopter to the large referral centre for definitive treatment. We now had to take him in the opposite direction, attached to similar equipment and drugs. We planned to disconnect support from Alexander, surrounded by his family and friends, in his own home. We had never done this before and met one administrative challenge after another. The system had been designed to move in only one direction. Everyone was sympathetic to the exercise and so we overcame the many logistical obstacles and, in doing so, gained unexpected support from the various parts of the system during the process. The obstacles were not inconsiderable. Were the nursing staff from the ICU covered legally or for personal injury if they worked outside the hospital? What forms had to be filled out by the ambulance system when seriously ill patients were taken from hospital to home? There was no such form. What about over-cautious hospital administrators; how could we gain their permission or at least get around their objections? There was a precedent where patients could sign themselves out against o r c h e s t r at i n g d e at h s

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medical advice. However, there were no procedures or policies for what we were planning. This was dangerous territory. The final link was Alexander’s local general practitioner, who could see the logic of what we were doing and agreed to support Alexander and the family in whatever way was necessary. Alexander died in his own bed eight hours after the ambulance arrived at the front door of his house. The nurse and doctor from our unit said he looked peaceful and wasn’t afraid when the plastic tube in his windpipe was removed. For the first time that we knew of, an intensive care nurse handed over to a community nurse in a patient’s home. The community nurse knew how to give morphine as needed. We have now taken several patients home to die. Each time it has been a moving and unusually satisfying experience for our staff, as well as for the patient and relatives of the patient. It redefines normality for the staff and reminds us of the balance between what we can do and what we should do. 98

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9 | Father of the year

R

inaldo was twenty-six years old and had been diagnosed with muscular dystrophy when he was seven. Muscular dystrophy is a disease where the muscles gradually waste away, eventually leading to death as a result of being unable to breathe. On average, death occurs within ten years of the diagnosis first being made. In one way, Rinaldo was doing well, as it was nineteen years since he had been diagnosed with this dreadful disease. During this time, he had shrunk so much that his head appeared huge. It was disconcerting when a normal voice came out of such a large head. Clearly, the head wasn’t large, the body had merely wasted away; there was hardly a muscle left. This was my first day on duty in the intensive care unit for about three weeks. During handover, I had been informed by 99

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my colleague that Rinaldo had a supportive family, who insisted that he wasn’t to be told that the end was near. My first reaction was to respect the autonomy of the patient, and while listening to the family’s concerns, I had to firmly insist that we include the patient in our discussions and deliberations. Unfortunately, we sometimes need to speak over the patient and through relatives. This is understandable when the patient is unconscious; however, Rinaldo was not only conscious, but alert and looking anxious. I felt obliged to speak to the family first and insist that I include Rinaldo in our discussions. I caught the father’s eye and asked if I could talk to him outside. This, of course, was violating the patient’s autonomy. Not only that, it made Rinaldo even more anxious. During my discussion with his father, it became obvious that Rinaldo knew everything about his disease, including its inevitable outcome. He was fully informed of how it would progress. First, his legs would not be able to support him. Two years after he was first diagnosed, he was in a wheelchair. Then his arms would weaken, until he could no longer feed himself. By this time, he would need to be lifted on and off the toilet, bathed and even moved from side to side in his bed. He knew the final stage was weakness of his diaphragm, making it difficult to talk because of the lack of airflow through his vocal cords. Eventually, there would not be enough strength to breathe or cough. The accumulating mucous secretions would become infected and he would die of pneumonia. He was at this stage now. We had treated the pneumonia with antibiotics and physiotherapy and he was now back to where he had been before admission to hospital; waiting for the next episode of pneumonia. 10 0

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I explored the background of Rinaldo’s disease with his father, and how we would handle these last few weeks. Rinaldo’s father was convincing when he explained that we needn’t tell Rinaldo that the end was at hand. Rinaldo had known that there would be an end from the age of seven. The progress of the disease was constantly discussed by the entire family. Whenever Rinaldo asked his father if he was going to die now, he would say – ‘Yes, you will die, we will all die, but not until God is ready for us’. He could see no point in constantly updating the inevitable – now it could be months, now weeks and now it could be days, hours, even minutes. Rinaldo knew exactly what his disease meant and how the final stages would pan out. Having been convinced that the father’s approach was in the patient’s interest, I decided to take a different tack and asked him if he thought Rinaldo would like to go home to die. He thought hard about this and said that Rinaldo would need access to what he had when he came into hospital, including oxygen and something to make him less anxious as he struggled to catch his breath. I decided not to explain that it wasn’t the oxygen, as such, that helped Rinaldo’s breathing, but the pressure that was delivered via a mask and special machine. The machine that delivered pressure was complex and not suitable for home use. Nevertheless, both Rinaldo and his father associated the oxygen cylinder and the simple mask that was attached to it with an improvement in his symptoms. An essential component of managing the final stages of Rinaldo’s condition was giving him small amounts of sedatives for his anxiety. We had given him some when he first arrived in hospital, with good effect. fat h e r o f t h e y e a r

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It was at this point that I began to learn about the special relationship between Rinaldo and his father. After returning to the room, the father had an open discussion with his son in front of Rinaldo’s mother and me. They talked like old friends, sharing the decision and its consequences as equals. They discussed the possible disadvantages, especially lack of access to what the hospital could offer. Rinaldo’s father referred to me when it came to issues such as how to secure the oxygen cylinder. With some hesitation, they agreed that going home would be the preferred option. Rinaldo’s father followed me out of the room and, after thanking me, explained how he had left work two months after being informed of Rinaldo’s fate. Since then, and for the last nineteen years, he had devoted his life to caring for Rinaldo. He did everything, apart from the cooking; including bathing, dressing, feeding, and lifting him on and off the toilet. He made it clear that they were each others’ best friend. They called each other by first names. Their favourite pastime was playing card games together. It was obvious they were a formidable team. The following Sunday was Fathers’ Day. The usual national celebrity father would be announced as part of the day’s formalities. Rinaldo died peacefully at home two weeks later. I made enquiries about how I could nominate Rinaldo’s father for next year’s award and was firmly told that fathers couldn’t be nominated; a national committee decided these things. I persisted and was told that even if the committee were to consider his case it would be impossible to award the honour to a father whose son was no longer alive. 102

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Robert had been a paraplegic since the age of twenty as a result of a work-related accident. Robert’s father, Anthony, was his sole carer and had been so since the accident. Robert’s mother had left them both in the year following the accident. A continuing problem with the care of spinal injuries is that all the resources and expertise are poured into the front end, the acute hospital with all of its equipment and resources. Patients are then discharged home under the care of a local doctor and whoever the carers may be. They are complex, high-maintenance patients, requiring constant attention to their toileting, pressure areas and general physical needs; to say nothing of psychological support. Like Rinaldo’s father, Anthony left his job to look after his son. They were not well off and lived off a state pension. They received no specialised home-based medical support and Anthony could not afford a car to take Robert to clinics. To make matters worse, Robert began to suffer from severe spasms in his neck as a result of his paraplegia, causing unbearable pain. Robert had attempted suicide the day before, taking a mixture of sedatives and mild pain relief tablets. The management of the overdose was straightforward in a purely medical sense. It was also obvious that if we remained within our own area of responsibility, we could just simply discharge him to someone else’s care. However, we also knew that he would do the same thing again if we didn’t address his underlying problem of severe pain and that he may return to hospital with the same problem, or be successful with his next suicide attempt. We started making enquiries and found a new service; a nurse and an occupational therapist, specifically trained in managing fat h e r o f t h e y e a r

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spinal injuries in the home. It was concerning when they asked in a mildly threatening way, where we had found the details of their contact numbers. Perhaps their service had uncovered a long neglected need. Whatever the reasons, both Robert and his father took new hope. We convinced the service to visit both of them in hospital, just to emphasise that they wouldn’t be discharged to fend for themselves again. These two cases underline two weak points in the delivery of health care. The first is its concentration at the front end. You are forever exposed to television dramas with helicopters, paramedics, emergency rooms, cardiac arrest teams, and doctors gravely breaking bad news. There are very few programs featuring slowermoving dramas such as those played out by these two young men and their fathers. The second weak point is society’s dependence on home carers, which is largely unrecognised. People who require such care are suddenly faced with being prisoners in their own homes. Both Rinaldo and Robert were young; most, however, are elderly, totally dependent and often demented, unrecognisable shadows of themselves. Carers often have little choice, especially if alternative caring options are either non-existent or too expensive. When I see these patients and their carers in my ICU after a sudden deterioration or change in their condition, I wonder about the relief the carers must feel, just to have a few days to themselves. Some may even secretly hope that it might be the end of the patient’s and their own suffering. I have taken to giving special attention to the carers, trying to identify with what they have been through, how lonely and difficult it must have been at times and how much of a 10 4

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relief it would be if the system shared some of the burden of care. The complicity is cruel. The government and unaffected taxpayers ensure the carers cannot complain about their lot, without appearing uncaring. The patients, if not demented, are probably grateful to have someone they know looking after them. The carers may struggle with other feelings, such as guilt and resentment. To suddenly imprison someone in a house for twenty-four hours each day is a harsh sentence and may last the carer’s lifetime. Society easily accepts and funds what we do in the ICU. Patients are sent home, requiring full-time support by a carer who often has little or no assistance.

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10 | When things go wrong

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teven Bolsin is one of the medical world’s heroes. He hasn’t spent his life unravelling the secret of genes in a well funded laboratory, nor has he been nominated for a Nobel Prize. In fact, he was an ordinary cardiothoracic anaesthetist in Bristol in the United Kingdom and almost single-handedly was responsible for bringing what’s become known as the ‘Bristol Case’ to the attention of the world. He noticed that the outcome of paediatric cardiac surgery at Bristol was not up to the standard he was used to. Many children were unexpectedly dying. He initially shared his concerns with colleagues; then collected some data and informed his immediate superiors. People were feeling uncomfortable. He gradually became professionally and socially isolated – a leper within his own department, breaking unwrit10 6

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ten codes of conduct. (The medical tribes formed a cohesive alliance where, before, there were only loose ties of commonality.) He went outside the usual peer review process to the hospital management; then to his professional college; and finally to the heads of the National Health Service (NHS). Doctors have the responsibility of monitoring their own standards; management are responsible for coming in on budget; and policy makers are left to continually reorganise the top few layers of bureaucracy, according to political whims and current ideology. Clinicians directly involved in delivering health care in the NHS have been coming to and from work in their respective hospitals since the late 1940s, when health was first nationalised in the UK. During that time, they have witnessed many changes but essentially continue to care for patients in much the same way as they always have. They are only vaguely aware of the constant health system mergers and closures, and rearrangements of the tiers of health bureaucracy. The health system in the UK is very bureaucratic, but in spite of this, the clinicians responsible for direct patient contact usually provide a high level of care. However, in this case it failed dismally. Eventually, Steve went to the press and caused a scandal, which rocked the country and had reverberations around the world. Doctors and health administrators are now more aware of a responsibility to society as well as to their own inherent sense of quality care and the need to avoid being sued by disgruntled patients. During my training, I was assigned to a senior anaesthetist, who, unknown to me, until I first worked with him, was addicted to anaesthetic gases. He was continually ‘testing’ the when things go wrong

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machine, until he almost lapsed into unconsciousness. Dumbfounded, I related my experience to a more senior trainee, who explained that the department had been aware of his problem for many years. They assigned a competent trainee to him for every operating session to ensure patient safety. My reaction at the time was to feel honoured that I had reached the level where I was thought to be competent enough to look after both him and the patient. I was proud that I was trusted with the family secret. I didn’t feel part of a cover-up. Quite the opposite, I was proud to be part of a club that cared for its own to an extent where, although he was no longer able to function in his job, he could continue to have his dignity and be paid. He had given a lot to the hospital over the years and now was being ‘carried’ by the department. When I was appointed to my first senior specialist or consultant post I orchestrated a similar system, when one of the young nurses working in the ICU was diagnosed with terminal cancer, but wanted to continue working. We all covered for her, as she frequently needed to lie down and receive opiate pain relief. She worked until two weeks before her death. At the time, it felt like one of the most rewarding and satisfying endeavours I had ever been involved with – I was carrying on the tradition and felt good about it. In both cases, patient safety was not compromised as colleagues did their work. However, even under those circumstances this sort of practice would not occur today. The surgeon involved in the Bristol Case was apparently a decent man and had many fine attributes. There were court cases, daily headlines, and the parents of the dead children formed selfhelp and advocacy groups. 10 8

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Life became so difficult for Steve and his family that they had to leave Britain. They emigrated to a country town in Australia. To hear him recount his story is humbling. He addresses medical conferences occasionally. Like Nelson Mandela, there is no bitterness – he modestly recounts what alerted his suspicion initially; what steps he took to alert others; how each step failed; and how, eventually he gave the media all the details. He explains how his wife and children were the real victims, not him. He has obvious regrets about that, but you can see by the type of man he is, there was little choice. I wrote to my college and suggested that they acknowledge not only his courage and integrity, but how he had changed medicine forever. Nothing came of it. The scandal of Bristol was allowed to happen because there was no agreed way of measuring outcomes or performance. This remains one of the greatest weaknesses of health care. We can measure how much it costs and there is a large and expensive industry within health doing exactly that. Clinicians are beginning to be accountable for costs. However, there is little in the way of an equivalent industry to measure patient outcomes, or in modern industry speak – the core business of health care. We now receive monthly electricity and telephone bills with not only the amount owing, but what makes up those costs. Often there is a bar graph, demonstrating how this account compares to this time last year and perhaps last quarter. There are few similar measurements available to health. There may be some figures on waiting lists for elective surgery or how long people have to wait in emergency departments, but these are only indirectly related to quality of care and are so difficult to interpret when things go wrong

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that they become dangerous in the hands of politicians. Doctors point out weaknesses in the system and try to obtain more resources; administrators manipulate or ignore the data in order to save money. How do you know who is a good doctor and whether a hospital is safe or not? The most accurate single piece of information is probably where doctors would themselves send their loved ones for care. Probably none of the doctors at Bristol would have sent their own children to the surgeon in that city. How can the inside knowledge that health care workers have be translated into a number or score, so that the community can share the same knowledge and make the same choices as those in the know? The challenge was partly addressed by one of the greatest researchers in intensive care – Bill Knaus. While everyone respected that there were more deaths as a result of cardiac surgery in Bristol, the reason proposed was that they were the difficult cases– the ones more likely to die. For example, using death rates as a measure of a hospital’s performance would be misleading if you compared a hospital treating elderly, very ill patients with a hospital doing only day-only plastic surgery on patients less than thirty years old. Knaus solved the problem by using a severity of illness weighting score at the time of admission to the intensive care unit. Using this index to adjust for how severely ill the patients were, he compared hospital mortality, not mortality in the ICU, as clinicians trying to make their figures look good might have transferred their about-to-die patients out of the ICU into a general hospital bed to make their figures look better. The real beauty of Knaus’s work, however, was in develop11 0

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ing a score which measured severity of illness. He used three parameters: age, chronic illness and acute physiological abnormalities. You start getting points when you reach forty-four years of age and collect more as you get older, reflecting the decreasing ability of the body to survive illness or accident as you age. You get points if you already have a serious chronic illness, such as cancer or severe heart disease. That also makes sense. Chronic diseases make the body more vulnerable – the old and frail are more prone to be taken by the predator, in this case, a sudden illness or injury. The third dimension determining the chances of survival is how severe the illness was at the time of presentation. This is a measure of the body’s reaction to the illness, rather than a specific measure of severity for the hundreds of diseases that can bring you into an ICU. You receive points according to the level of disturbance of basic vital signs such as blood pressure, pulse rate, respiratory rate and level of consciousness, as well as abnormalities in blood tests. The three dimensions are summarised as APA – acute physiological abnormalities, and CHE – chronic health evaluation, which also includes age – APACHE. The APACHE score has become the gold standard for the initial severity of illness on being admitted to an intensive care unit. A score of zero probably means you shouldn’t be in the ICU, whereas your chances of surviving with a score above thirty-five are approaching zero. Finally, we had some hard data. Predictions of death could be made and the quality of an ICU could be estimated. The predictions of death can never be 100 per cent certain and therefore clinicians are reluctant to use them alone. However, we can when things go wrong

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estimate the quality of an ICU by using the standardised mortality ratio (SMR). The numbers predicted to die can be ascertained from the initial APACHE data. This is then compared to the actual numbers of patients who died. If more actually died than predicted, the unit may have a problem. If less actually died than predicted, the unit may be delivering a higher quality service than average. We now had a way of allowing for the difference in the severity of the disease when comparing outcome. If this sort of data had been available in Bristol, then the cover-up could have been exposed much earlier. 11 2

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As part of a research program, we used to measure every one of our patients’ quality of life (QOL) after they left hospital. It was interesting to see how humans adapt. On initial discharge they may have severe functional impairment and pain, with scores of around 0.7 out of 1.0, where zero is the worst and 1.0 is a perfect QOL. At the end of a year they may only be left with, for example, a decreased ability to lift their arm, but to them it continues to be a major handicap, as they still score 0.7. Alternatively, they may gradually lose mobility and be confined to a wheelchair with a full-time carer required, and yet they still have the same QOL score as when they first left hospital. I’m reminded of Primo Levi’s book, If This is a Man, and his experience in Auschwitz. Each day, his lot became more unbearable, but somehow he adapted and towards the end, still had enjoyable times as well as moments of despair. Outsiders scoring his QOL would likely have scored him close to zero in those final weeks in Auschwitz, but we underestimate the ability of humans to adapt and set new relative scales within their own psyche. The World Health Organization developed a universal QOL score to measure everyone in the world. Ironically, the worst-off were those living in the large western cities of developed countries, not people in north Africa, living on a subsistence diet. If we used QOLs as our units of health outcomes, the conclusion would be that we had to shift what little funding there was for Africans living in subsistence conditions or worse to the heart of middle-class western civilisations. There can obviously be problems with measurement in health. Another problem was the establishment of QALYs to direct funding in health. A QALY, or quality-adjusted life year, when things go wrong

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is derived by adjusting the QOL measurement according to the number of years lived after your health intervention. One of the ways of determining a QALY is to ask people whether they would like to live one year with a QOL of 1.0 or forty years with a QOL of 0.5; that is, half the normal QOL. This is called time trade-off and is then used with large populations in various disease categories as a way of determining the prevailing opinion. For example, a renal transplant may generate forty QALYs, whereas treatment for particular kinds of cancer might only generate five QALYs. The final step in this new way of looking at measurement in health was to invite the economists in. When they put a cost on renal transplants and cancer treatment, you could determine a cost for each QALY; then compare what we do in health care in terms of cost for how much happiness and satisfaction we generate. The next step, which fortunately hasn’t occurred as yet, and may not, given the track record of economists at modelling and prediction, is to retain only the most economically efficient the interventions and abandon the rest.

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11 | The wonderful gut

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hen you die and the circulation stops, you begin to rot from the inside, not the outside. This only occurred to me late in my medical life. Before that, I had the image of a body lying in a coffin with worms and maggots gradually working their way through the skin, nibbling away, until there was nothing left but a skeleton. In fact, the gastrointestinal tract or gut is the source of decomposition of the corpse. There are millions of bacteria living there, waiting to invade as soon as the body’s natural defences have disappeared. The gut contents are really outside the body, contained within a long tube from the mouth to the anus The lining of the gut is like an inside skin, and within it are litres of fermenting and foul-smelling contents. 11 5

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The bacteria in the gut live in a symbiotic relationship with us – they help to break down our food so we can absorb the nutrients it contains, while we, at the same time, sustain them by letting the bacteria use some of our food – a win-win situation, except when our defences against bacterial invasion in the walls of the intestine fail. Normally, this doesn’t occur; the barriers against bacterial infiltration are formidable. Firstly, there are the physical borders of the cells lining the gut, arranged like neat bricks in a wall, with barely a gap between each one. Then there are white cells, the body’s kamikaze defenders, constantly patrolling the next layer, in case the odd bacteria did break through. Finally, there are chemicals produced by our immune system which destroy the bacteria and neutralise their toxins. It has to be an efficient system because there are literally millions of these bacteria living inside our intestines, waiting to explore the limitless opportunities within our body. This is why taxidermists carefully remove every piece of offal from an animal before stuffing, and why animals immediately have their intestines removed before preparation for human consumption; except in cases of deliberate and controlled rotting used with certain game animals. In the case of drowning, we initially sink because we are denser than the surrounding water. Then we begin rotting from the inside, producing gas, which then causes the body to bob to the surface and float two or three days later. People looking for drowning victims know all about this. Likewise, when an animal is killed by a car and not flattened, it slowly swells over the next few days, while looking intact from the outside. Organs and tissues such as hair and skin not only don’t 11 6

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decompose early, they continue growing for a short time, as they require very little in the way of oxygen and nutrients to continue living. On the other hand, the brain, requiring more sustenance than any other organ, dies within minutes, and the gut begins dying soon after. The cells lining the gut are always rapidly multiplying in order to regenerate themselves; they are therefore prone to any threat to cell division and growth such as chemotherapy or radiation, which is why the victims of nuclear bombs had early symptoms of diarrhoea. Radiation destroyed the ability of the cells to replicate and the gut was among the first organs affected. Cell production in the bone marrow is also high, making them also especially prone to the effects of radiation and chemotherapy. Although hair and nails continue growing even when patients are otherwise dead, it is not a healthy growth. For example, the hair tends to be unhealthy looking and prone to falling out in seriously ill patients in intensive care. Fingernails also show retarded growth, marking the patient’s time in the ICU in much the same way the bands of tree rings inform us about the sort of season they had 100 years ago. Similarly, during pregnancy, body nutrients are diverted to the growing baby, sometimes leaving the mother’s hair brittle and lacklustre. Often, patients in the ICU have reduced blood flow, allowing bacteria and their toxins to move past the usual barriers in the gut lining, thereby moving into the bloodstream and invading the body, causing damage to other organs. The longer someone is left with inadequate circulation or oxygen, the more likely this is to occur. the wonderful gut

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The implications of this have only recently been recognised. For example, we talk about ‘the golden hour’ in managing serious trauma. A patient bleeding after trauma has diminished flow to the so called non-vital organs, which include the gut as well as the skin and muscles, in order to maintain circulation to the three vital organs – the brain, heart and kidneys. This is sometimes a life-saving response. However, if the circulation is not rapidly restored, damage occurs which leads to complications and sometimes death, two to three days after the initial trauma. In these circumstances, death is sometimes as a result of the bacteria crossing the compromised gut lining, moving into the bloodstream, multiplying and causing septicaemia or blood poisoning. Ironically, the body’s own responses to septicaemia are sometimes amplified unnecessarily in an attempt to deal with the perceived threat. The body’s responses can then damage its own cells in the process of destroying bacterial cells. When you next see an ambulance racing to a trauma victim with its lights flashing, imagine the first bacteria are crossing from inside the compromised gut into the bloodstream and that, unless the bleeding is stopped and the circulation rapidly restored, irreversible damage will result: pull over and let the ambulance pass. During the first decades of carving out the specialty of intensive care in the 1960s and 1970s, the abdominal cavity was overlooked. We were obsessed with higher profile vital organs, such as the heart, lungs and brain. Non-vital organs were viewed as passive receivers of oxygenated blood – get the lungs and circulation right and the other organs will look after themselves. For example, although the spleen is a filter and source of reserve 11 8

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blood supply, we can live without it. Surgeons sometimes damage it during complex procedures and then just remove it rather than attempting to repair it. Similarly, the kidney’s function can easily be replaced by dialysis; the intestines are only useful for feeding and we could supply nutrients by bypassing them, using intravenous feeding. Diseases of the pancreas often cause serious problems but the pancreas could be totally removed and, with appropriate replacement therapy, the patient can live a relatively normal life. The insulin produced by the pancreas is easily replaced with an injectable form, and the chemicals (or enzymes) it manufactures to break down food within the intestines are not essential as they can be replaced by oral substitutes. The genitals are not going to be of much use in seriously ill patients while in the ICU. Even the major artery to the lower part of the body, the aorta, can be repaired or replaced. If worst came to worst, the limbs aren’t necessary for life. The liver is a problem; you would die fairly quickly without its ability to break down toxic substances. Even here though, we are making progress with options such as transplantation. Come to think of it, all an intensive care unit would need to keep life going would be a torso containing the heart and lungs, with a head and liver attached. The person living inside this carcass may not be happy when they were finally discharged, and their carers would certainly have their work cut out for them. The chest was where the action was in the 1960s and 1970s – specifically, the heart and lungs. Most of our textbooks, research articles and conferences were focused, and still do concentrate the wonderful gut

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largely, on these crucial organs. However, we have been forced to think below the diaphragm, as many of our patients were dying as a result of catastrophes in the abdomen. For example, when the pancreas becomes inflamed it releases chemicals which literally dissolve the tissues they come into contact with. This is not surprising, since the same chemicals are meant to dissolve the food inside your intestines, much of which might be animal tissue, like our own. Similarly, when the intestinal contents spill out inside the abdomen, as a result of trauma or surgical complications, they contain millions of bacteria which turn into pus, causing severe toxicity and often death. Initially, we believed the latest and most expensive antibiotics would kill the bacteria associated with intestinal spillage, and the body would simply mop up the damage in time. In fact, these patients need to have the offending material surgically removed and often require repeated operations. Patients who were thought to be ‘too sick to have an operation’ suddenly became ‘too sick not to have one’. Unless the offending material is surgically removed, the patient often dies. Military surgeons have known about this for centuries. Soldiers suffering injuries in the First World War knew the difference between limb and abdominal injuries. Paris underground trains had, until recently, seats specifically set aside for amputees from this war. Limbs are clean and sterile, initially at least. The severely crushed or splintered part of a leg or arm could be amputated and patients had a good chance of recovery. However, there weren’t any underground train seats set aside for the survivors of abdominal wounds, as most died. Soldiers with abdominal wounds were triaged (or separated) on admis12 0

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sion to a field hospital, quietly moved to a corner and given morphine, or as sometimes occurs in the movies, given a cigarette by a close friend, while everyone exchanged serious and knowing looks. The activity in the background of the casualty clearing stations was confined to sawing off limbs, not performing complex abdominal procedures. Nowadays, the emphasis is on early and aggressive removal of any source of potential infection within the abdomen. Even after what is considered total removal of the offending fluid, large plastic tubes are often inserted to ensure any remaining secretions are drained away. Sometimes the whole abdomen is left open and filled with large sterile packs soaked in warm fluid, and the abdominal cavity washed daily, with new packs being applied until absolute cleanliness is ensured. These are complex operations, usually requiring support in an ICU, and casualties up until more recent conflicts such as the Vietnam War did not have access to this type of care. What about feeding during serious illness? When intravenous feeding was first developed, we thought we could sustain life indefinitely with food given directly into the bloodstream, bypassing the gut. While intravenous feeding still has a place, the technique has serious complications, including death. Now there is evidence that outcomes are much better if the gut itself is used for feeding. Liquid food is dripped directly into the stomach via a tube taped to the nose – a nasogastric tube. This was a pity for the drug industry, as up until then, they had made huge profits from intravenous feeding products. There was a large profit discrepancy between the sales of intravenous feeds, compared to using ordinary food delivered into the wonderful gut

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the gut. The richer intravenous feeding companies could support research, whereas the manufacture of normal canned liquid food made modest profits. And so it was years before research showed conclusively that patients fed via their gut had an improved outcome and that, indeed, the gut was much healthier when given food to work with. It seems obvious now but so did intravenous feed at the time. The combination of an intuitively appealing concept, in this case bypassing a damaged gut by intravenous feeding, together with money for research, which gives the idea legitimacy, often results in an unhealthy relationship between doctors and private industry. When this is combined with the desire of clinicians to feel they are at the cutting edge, there is an almost irresistible force to conform to the latest, and invariably most expensive, therapeutic option. There is always a contempo12 2

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rary equivalent. Today’s magic bullet could be a new drug as a simple answer to control the complex process of septicaemia – one of the main conditions we treat in the ICU. One doesn’t want to be first on a bandwagon; nor does one want to be last off; but one definitely wants to be on it. The bandwagon is still careering, out of control, around the speciality of intensive care medicine. Just as abdominal injuries make it difficult to supply food to a patient; it is also difficult to deliver food to the intestines in the case of the seriously ill. Our grandmothers expressed this in the form of the maxim ‘feed a cold, starve a fever’. In other words, if you only have a cold, you are not all that sick and the body can cope with both fighting the infection and diverting resources to absorb a normal diet; whereas, in the more serious case of influenza, you lose your appetite. This is the body’s way of diverting resources to where they are most needed – such as fighting a lifethreatening infection. Loss of appetite, nausea and vomiting are all part of the spectrum of any serious illness, especially infection. The guardian of the intestines is the stomach, the first port of call for ingested food. The stomach starts the digestion process by dissolving the meal with acid and other powerful corroding juices. If it decides that the patient is too sick to eat, it will literally throw up the food, presuming that you ate it in the first place, which is probably unlikely under these circumstances, because nausea is also a reflex to protect the gut from extra work while the body has other priorities. However, even during the most serious illness, the remainder of the intestines, the whole seven metres of them, are able to the wonderful gut

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carry out their normal function of breaking down and absorbing food. We can now trick the stomach by pushing feeding tubes past this well-intentioned guardian, directly into the intestines. The industry which used to make the expensive intravenous foods is now trying to convince us to use oral food that it also manufactures, but with expensive additives. Other gut icons have been challenged. For example, the intestines make about seven litres of fluid each day on top of what you eat and drink. Of course, most of this is reabsorbed. Nevertheless, it is flowing and slushing about inside us. We have therefore begun to challenge the concept of ‘nil orally’ – a sign seen over patients’ beds for over a century – which is there to protect patients who have a gut disorder, especially after surgery to sew pieces of gut together. The sign assumes that this order will stop the body’s own seven litres from being produced, and presumes that sips of water would threaten the integrity of the surgeon’s sutures. Neither is true.

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Another pronouncement that has been around for just as long is ‘clear fluids only’. The colour of the normal fluid produced by the body is far from clear and it is doubtful whether adding to the body’s own ghastly green/yellow solution would make one iota of difference. The whole concept of feeding, whether via the gut or intravenously, is distorted in the seriously ill. The food we eat is broken down within the intestines, absorbed and then broken down even further in some cases, or used to build more complex molecules in other parts of the body. Building new tissues and maintaining existing ones is called anabolism. Proteins known as enzymes facilitate these chemical reactions within our bodies. When the body is threatened by serious illness, anabolism largely ceases; the chemical reactions now result in breakdown of existing tissue – the body becomes catabolic, and this chemical state is unavoidable. Blood flow and sustenance is diverted to essential processes, such as white cell production in order to fight infection. The fever and stress hormones released as a result of the illness facilitate catabolism, or breakdown, rather than anabolism. Wasting in patients in intensive care is severe and inevitable. No matter how much food is poured into the body, whether directly into veins or via the intestines, biochemical reactions break down what the body considers to be non-essential tissue such as fat and muscle. It’s not as if muscles are needed when you are on a ventilator. A short stay in the intensive care unit may be added to the many outrageous and lucrative schemes for an easy solution for weight loss. Scores of wealthy and obese clients could be placed on ventilators; the patients lined up in rows within large converted factories, like battery hens. The contracted degree of the wonderful gut

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weight loss, translated into days or weeks in the ICU, with the choice of a serious infection – designed to increase catabolism – provided as a discretionary add-on at an extra cost. The obese patient is picked up by relatives a few weeks later: trim, perhaps not taut, and a bit wobbly at first. Plastic surgery and other extras could be negotiated and performed during their stay in the ICU. No self-control necessary. Just an induced coma and you wake up literally a new person. But then didn’t that deep-sleep therapist end up on the wrong side of the law in the end? Clinicians listen for bowel sounds – the tinkling noise produced when fluid and air gurgle together within our intestines. As we all know, you often don’t need a stethoscope to detect them. The sound becomes embarrassingly obvious during silences over dinner conversations. We used to think the absence of these sounds was equivalent to the intestines not working. This is also being challenged. It’s a sign of activity when they are present but their absence doesn’t necessarily mean the contents in the gut are not moving or that food isn’t being absorbed. Another article of faith currently being challenged is related to the tight, distended abdomen which is often found in the seriously ill. In order to estimate the seriousness of this condition, we used to measure the girth of the abdomen with a tape measure. We drew two small parallel lines with a pen on each side of the abdomen to ensure it was always measured at the same place for the purposes of accuracy. The tape measure remained under the patient and, every hour or two, both ends of the tape measure were pulled around the abdomen, exactly fit12 6

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ting into the two sets of parallel lines to ensure reproducibility. The girth measurement was dutifully recorded. Not only was there never any action taken on the basis of this measurement but it turns out it was meaningless. While in the long term, in conditions such as pregnancy or in the expanding waistline of middle age, the abdomen can slowly expand or shrink; in the short term, it simply becomes tighter. The intra-abdominal contents become compressed. This is based on simple physics,

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which all doctors are taught at some point in their schooling. In the short term, as the pressure rises inside the abdomen, the circumference remains almost unchanged. It is that pressure that we should have been measuring. Like many observations in medicine, this was not new. In the days before research ethics committees, volunteers (probably prisoners or medical students) had their abdomens slowly compressed with inflatable bags placed around their girth. Measurements were simultaneously made from catheters that the wonderful gut

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had been surgically inserted into their abdomen, bladder and kidneys, as well as major veins and arteries. One such study was performed in 1947 and it showed the catastrophic effect of increased pressure as abdominal organs become compressed. Kidneys stopped working, the blood flow from the legs ceased, the intestines stopped functioning and the movement of the diaphragm was impeded as it was pushed up into the chest, eventually causing breathing to cease. Even the heart was seriously compromised and blood flow to the brain reduced. Not surprisingly, this type of research is no longer allowed to occur, even in ‘volunteers’. In spite of this research, until as recently as the early 1990s and even now in some units, we measured something which was totally spurious and ignored high abdominal pressure, without realising the damage it was causing. It is now routine practice in many ICUs to measure the intra-abdominal pressure, and if it’s too high the pressure is relaxed by opening the skin and muscle and covering the abdominal contents with material such as clear plastic. I often wonder what other simply remedied yet life-threatening situations we mindlessly observe, without thinking about their inherent dangers. One of the causes of increased pressure in the abdomen is gaseous distension, especially in the elderly. Lying on your back in intensive care, especially when you are unconscious, is not conducive to passing the normal amount of gas that is produced within the intestines. Normally, we discreetly pass this gas in the course of a day. The problem with patients in the ICU is that they often lie directly on their back and it is very 12 8

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difficult to release gas when the pressure of your body is sitting directly on the anus, effectively blocking the outlet. Even when you are sitting rather than lying on your anus, the release of gas is often accompanied by a telltale rocking to one side. Your anus, amazingly enough, can sense whether solid, fluid or gas is about to be discharged. Being aware of that fact alone gave me a new respect for this small muscular valve which guards the last part of your gut. We have barely begun to study the potentially fatal problem of gaseous distension in elderly patients in the ICU. No-one has actually measured the gas passed by patients in the ICU and how it could be modified by disease, drugs or various manoeuvres. This obviously does not have the same research prestige or the backing of industry that would normally support university departments and extensive research programs.

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12 | The labels on the pack

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ne morning, before the daily ward round commenced, I was asked to review a patient in the emergency department (ED), with a view to admitting her to the intensive care unit. She was only sixty-three years old and had terminal respiratory failure, related to cigarette smoking. The challenge in these cases is how to define ‘terminal’. Based on our current understanding, she had almost no chance of surviving twelve months. This prognosis is much the same as with many untreatable cancers. While society and the medical profession accept the inevitability of death and futility of treatment in patients with terminal cancer, we seem to apply different measures to smoking-related lung failure. The prognosis has the same certainty as cancer and the failure of current treatments is similar in both diseases, yet 13 0

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the way we approach them is different. It’s as if it is hard to believe that a pleasurable and widely accepted habit eventually results in death. If the patient had cancer as a result of smoking, it would have been easier both for her clinicians and herself to face the prospect of dying. The patient was unable to take more than five steps because of severe breathlessness. She had shrunk away to almost nothing and was gasping for breath sitting on her bed, leaning forward against four pillows resting on her lap and exhaling through pursed lips – a marker of severe and extensive lung destruction. The staff from the ED had drugs and equipment prepared for me to connect her to a ventilator. I examined her and looked at her chest x-ray. There was no evidence of any reversible complication such as a burst lung or infection that we could perhaps work with and then send her home to wait for the next complication or eventual death, as a result of the inevitable deterioration of the little remaining lung function. I needed to avoid the false hope associated with informing her about treatment possibilities that might have given her a few extra hours or days of life, as it would be inferring that we had something substantial to offer. Besides, she had clearly stated on her previous admission that under no circumstances did she want to be put on a ventilator in the ICU for her last few days of life. Her children agreed, according to the notes. I spoke to her, explaining carefully that I could not find any treatable complication and that her breathlessness and panic were related to the fact that she no longer had enough functioning lung to support her life. She nodded impatiently t h e l a b e l s o n t h e pa c k

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and resolutely answered that she understood, simply saying, ‘I know’. I told her that I understood she was suffering as a result of the extreme shortness of breath and suggested that we ask her family to immediately gather. She could see them together or individually and say what had to be said or simply touch or be touched if she no longer had the strength to talk. She was adamant that she only wanted to see her daughter. I wondered at the time whether she wasn’t close to the others or perhaps she thought her daughter was the only one who would understand or be able to cope with dying and death at such close quarters. I then promised to give her whatever was necessary to stop her suffering from the dreadful feeling of not being able to draw enough breath. She half smiled and squeezed my hand. When the patient’s daughter arrived, I explained the hopelessness of the situation and what I had talked to her mother about. I explained her mother’s request to only see her and not the other children at the end. She understood immediately and explained that they had often spoken about such a situation and the agreement they had reached. She detected my curiosity and explained that the rest of the family were aware of the arrangement and had no objections. They had said their farewells in other ways at other times. I then explained to the nursing staff in the ED and documented the management plan in the clinical notes. The nursing staff were relieved and quite willing to give her intravenous morphine as prescribed and if necessary. She died almost one hour later. The staff assured me she hadn’t suffered and that her daughter sat beside her, holding her hand, quietly weeping. After 13 2

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she had died, her daughter lay next to her for some time, with her head resting on her mother’s chest. It is law in Australia that every cigarette packet has written in large letters over both sides one of six randomly assigned warnings: ‘smoking is addictive’; ‘smoking kills’; ‘smoking when pregnant harms your baby’; ‘your smoking can harm others’; ‘smoking causes lung cancer’; ‘smoking causes heart disease’. The irreversible damage to the lungs is not mentioned. Smoking is implicated in many other diseases but let’s not quibble, this is a good summary of tobacco’s lethal effects. I wonder when tobacco sales are finally made illegal in ten to fifty years, what people at that time will think of a society that allowed the widespread sale of such a deadly drug. Smoking is the direct cause of illness in up to one-third of the patients in intensive care units, in the form of coronary artery disease, cancers, blockages of the arteries, and smoking-related lung destruction. This represents a huge disease burden and cost for our society. I wonder whether attempts will ever be made to recover these costs from the tobacco companies. Profit is the only driver for the continued supply of cigarettes. I would imagine

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that a major threat to these profits would stop their manufacture far more effectively than public health warnings. The literature around smoking-related damage has changed little in the thirty years since I was a medical student. Two things happen to human lungs as a result of smoking. Firstly, the smoke irritant causes excessive secretion of mucous in the airways as the body attempts to dilute the chemicals in the smoke. The mucous causes coughing and excessive mucous production. Cells shaped like glass drinking goblets and situated in the walls of the airway produce the mucous. These cells multiply and become larger, exaggerating the normal physiological response of producing mucous to dissolve foreign chemicals, which all of us inhale to a lesser or greater extent. On the surface of the majority of these cells are thousands of tiny hairs, called cilia. In a beautifully co-ordinated process, they work in waves, carrying the mucous and minute foreign materials normally found in air to the top of the trachea or windpipe. Every so often, we cough up the products or they, unknown to us, cause the material to move out of the trachea, to be mixed with saliva and swallowed. Unfortunately, the toxic nature of the smoke paralyses the cilia on the surface of the airway. With excessive mucous production and no way to move the mucous up the trachea, it pools in the lower parts of the lung, causing the patient to rattle with each breath. Coughing helps, but does not result in complete removal of the increasing volumes of sputum. Because the mucous sits in pools within the lungs, in a warm environment, it is predisposed to become infected, causing the sputum to discolour and have an offensive odour. Physiotherapy and antibiotics have limited effectiveness. These 13 4

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changes are permanent, even when the patient ceases smoking. Obviously the situation becomes worse as a result of continued smoking. The second major effect of smoking on the lungs results in a condition with many different names – chronic obstructive pulmonary disease (COPD), chronic obstructive airways disease (COAD), chronic obstructive lung disease (COLD) and chronic airways limitation (CAL) are just some of the acronyms used to describe the condition. The two components of COAD are emphysema and airways narrowing. They both occur as a result of the smoke causing a decrease in the diameter of the very small airways and eventually their total obliteration or destruction. In order to perform the function of exchanging gases – taking in oxygen and expelling carbon dioxide – the lung has two major structures: the airways and the alveoli. The airways start with the trachea or windpipe, about 1.5 cm in diameter. It then branches into two bronchi – one to each lung. The airways then branch many more times, becoming narrower at each division until they are microscopic. At the end of the tiny airways are bunches of small bubbles or alveoli, where gas exchange occurs. Small capillaries or blood vessels surround each bubble and, during the blood’s course around each alveolus, the blue, deoxygenated blood becomes bright red, oxygenated blood, giving up the carbon dioxide to the air in the alveoli at the same time. Breathing air in and out provides fresh oxygenated air and expels the air laden with carbon dioxide. Smoking narrows the small airways leading into the alveoli as well as destroying the architecture of the small airways and alveoli, causing emphysema or holes in the lung. t h e l a b e l s o n t h e pa c k

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What clinical picture does this pathology result in? The patient coughs excessively and often rattles even after excessive coughing, and patients become increasingly short of breath as a result of lung destruction, limiting their ability to exercise until eventually they may be chairbound. The destroyed lung breaks down to form large air-filled cysts, increasing the size of the lungs and eventually causing the patient to become barrel-chested. Airway narrowing makes it hard for the patient to take normal breaths. They take shorter, more rapid breaths and they tend to use muscles we usually hold in reserve to help them breathe, such as the neck and chest-wall muscles – the so-called accessory muscles of respiration, usually only used during exercise. The expiratory part of the breath becomes longer as the air taken in on inspiration becomes trapped. You often hear smokers wheezing on expiration. As the disease worsens, the patient often has to lean forward in order to catch their breath and expel the air against pursed lips in an attempt to keep the airways open during expiration. Listening with a stethoscope, one can hear a range of sounds. Typically, the wheezing as a result of airways narrowing causes a cacophony of musical notes. Patients with the most advanced symptoms of emphysema make very little sound as the very small quantities of air are inspired into the destroyed and over-inflated lungs. A chest x-ray can show a wide range of changes, including large, over-distended lungs, as well as evidence of lung destruction, such as multiple small cysts. Eventually, patients with severe smoking-related damage cannot absorb enough oxygen or excrete their carbon dioxide. The heart finds it increasingly difficult to pump deoxygen13 6

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ated blood, returning from the body, into the architecturally destroyed lungs. Pressure builds up in the chambers of the heart, causing oedema and congestion in the lower extremities. The type of damage varies from patient to patient. Some have more airways narrowing than emphysema. Others have more chronic bronchitis and cough as a result of the excessive

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mucous production. Most have a combination of damage. As the damage becomes worse, patients fall into two categories – they are labelled informally as ‘blue bloaters’, thought to be more up the bronchitis or excessive sputum production end of the spectrum or ‘pink puffers’, thought to be down the emphysematous end of the spectrum. I’m sure most of us have seen stereotypical examples of these patients, crippled by smoking. t h e l a b e l s o n t h e pa c k

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You would think that, since this spectrum of smoking-related presentations is one of the most common diseases in the western world, it would receive due recognition during medical training. Not so. Many doctors do not find smoking-related diseases very challenging. It’s not just that there is little than can be offered in terms of treatment, the disease is also not difficult to diagnose. At the core of medical practice is diagnosis and treatment. Smokers do not present a challenge in either area. The only genuine contribution a physician can offer is to suggest that they cease smoking – even the most naïve layperson understands that; it’s not exactly rocket science. Moreover, many physicians overlook or deny the challenges in convincing their patient to cease smoking. It is a difficult and frustrating challenge with a high failure rate. Medicine does not have a good track record in this area. It’s a pity the same resources and effort are not put into research around effective ways to help people quit smoking that there are in new drug development or ways of managing rarer but more ‘interesting’ diseases. One could argue that, because the diagnosis, treatment and complications are so straightforward, there could be a more efficient and effective way of managing these patients, perhaps bypassing physicians altogether. Even in the commonly used general medical textbooks, smoking-related lung disease occupies only a small part of the section on respiratory diseases. It is usually buried deep in the respiratory section after the more interesting infections, asthma and many rarer diseases. For example, one of the more common reference books has six pages devoted to smoking-related disease and nine and a half pages devoted to tuberculosis. 13 8

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Now there’s a disease. Tuberculosis is making a comeback in specific patient groups, such as those with HIV/AIDS. There are many spectacular and interesting complications of TB, as well as the challenge of drug resistance. Unlike smoking-related chest disease, it’s a disease with drug treatment options. It’s also rare enough to make a diagnosis challenging. In my first job as an intern, I worked with a respiratory specialist, a beaten man with a drinking problem. He practised respiratory medicine when tuberculosis was common. Specialists in the area were respected and seen as the last hope. They would recommend many spectacular interventions such as surgically removing a lung, deliberately collapsing a lobe or whole lung, drawing fluid from around the lung or delivering some of the more powerful antibiotic cocktails. There was a huge void when tuberculosis all but disappeared, leaving only the disdained and unappreciated smokers.

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13 | The last photograph

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he morning ward round moved to the forty-two-year-old Aboriginal woman with a subarachnoid haemorrhage in Bed 3. I bent to examine her, gently easing myself past her three young children, who were acting as though she was simply asleep. She was almost certainly dead. I performed all the brain tests to confirm it. Then came the difficult challenge of informing her husband and mother. Her mother was almost totally deaf and her husband listened stony faced. I couldn’t guess what was in his mind – a shattered love; the practicalities of life without her? Some people, more commonly women, have an inherent, congenital weakness in the walls of the arteries that supply the brain. Not uncommonly, this weak section balloons out as a result of 14 0

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pressure within the artery. It then suddenly bursts, causing extensive bleeding. Most of these patients have a sentinel or warning headache before the event. This is the result either of a small bleed preceding the larger one, or perhaps as a result of distension of the vessel about to rupture. The patient may go to their local doctor, complaining of this sentinel headache. Most are given symptomatic treatment and told to come back if it worsens. The vessel usually ruptures soon after the sentinel headache, often with catastrophic consequences. It’s easy to blame the GP for not detecting the underlying problem at a potentially preventable stage. However, the same doctor may see thousands of young women with headaches every year and if they investigated each one to the degree required to detect the vessel weakness, it would cost society millions of dollars, be unnecessary

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in the majority of cases, and would result in a certain number of serious complications, including death, as a result of the investigation itself. Nevertheless, the suddenness of the event in otherwise healthy, relatively young people is always a tragedy. This case had a greater poignancy because of the woman’s obvious role in her family and the nature of the family’s financial circumstances. Her husband looked helpless, surrounded by his three children and mother-in-law. He had none of the questions that a better educated or more assertive member of the community might have had. Instead of tears, he conveyed a deep sadness that was evident in his eyes and the stillness of his body as the children ran around and pulled at their mother’s hands. His manner seemed to be one of acceptance. He reminded me of one of those birds that mate for life. He had lost his love. The patient’s mother had taken over the role of child carer already. I took the patient’s husband aside and told him that his wife was dead and that I was very sorry I couldn’t give him different news. The children fidgeted and the patient’s mother strained to hear. I struggled to use a word other than ‘dead’, but couldn’t think of one and thought I would be betraying them if I even tried. ‘What do I do now doc?’ was his answer to my speech. Then, after a few practical details, ‘Come on kids, we’ll go and see Mummy. Thanks for everything.’ As I left the ward, I imagined his household in a year’s time. He would probably still be stunned by the sudden loss of his wife. Maybe he would be drinking; perhaps he would have a new partner or have had a series of partners. He would very likely need help in some way to look after the children, and his network of 14 2

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male friends would not necessarily facilitate the growth necessary for him to adjust to his new parenting role. The women in his life would probably pick up as many pieces as possible. The other woman in the ICU was also forty-two years old. She had been through a relatively normal childbirth nine weeks previously and was recovering normally when she had a sudden and massive stroke. The family had seen the ward round approaching and had discreetly left just before we reached her bed. She was deeply unconscious and supported on a ventilator. The signs associated with a stroke vary. It is fair to say that the brain remains one of the last great frontiers of medicine. Our knowledge of its function is equivalent to our knowledge of circulation just before William Harvey discovered that blood travelled in a large circle through the arteries and veins, driven by a pump – the heart. We know a lot about the anatomy of the brain and we can now image it in minute detail with machines such as a CT (computerised tomography) scanner, magnetic resonance imaging (MRI) or PET (positron emission tomography). These machines tell us where the brain has been injured but very little about functional impairment. This woman’s CT scan showed severe and extensive damage on both sides of the brain as the result of a vessel blocked by a clot, a common cause of stroke. What exactly this translated into with regard to her recovery, or indeed, whether she would recover at all, we had little idea. We broadly know the site of some functions such as limb movement and speech. However, it is difficult to explain why sometimes there is extensive brain destruction and damage evident on our scans and yet the patient makes a near normal recovery; the l ast photogr a ph

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while at other times, another smaller area shows damage on the scan but the result is permanent and severe disability. I examined this woman using neurological signs, which have been part of the rituals of medicine for a long time. We examined her reflexes – at the knees, ankles and elbows – with a percussion hammer. Like the stethoscope, this has been an important part of the medical examination for over a hundred years and still can offer information over and above our sophisticated imaging. Her reflexes were exaggerated and she had a ‘clasp-knife’ response. In

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fact, I had never seen such an exaggerated example before. What this means is that when attempting to bend a joint such as at the knee, there is great resistance which suddenly gives way, in much the same way as a pen-knife blade suddenly clicks into its position after initial resistance. We were talking about this response and demonstrating it to the nursing staff, junior physicians and medical students. It was part of our training and culture to be interested in such rare signs. Often there’s a perverse sense of 14 4

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pride in being the first to find such a sign in a particular patient, sometimes associated with small mutterings of approval from the gathered ward round, reinforcing some of the more indulgent aspects of medical practice. This interesting sign, which we had now demonstrated on several occasions, was in stark contrast to its sinister implications. The combination of neurological findings almost certainly meant the patient would never recover and in fact could be dead within days. After the ward round moved on, I saw the patient’s husband, together with an elderly woman, who was possibly the woman’s or maybe her husband’s mother. The woman placed the nine-week-old baby on the patient’s chest. The baby then began to suckle at the condemned woman’s breast. I felt a sudden impulse to ask the father if he wanted a photograph taken of the child, breast-feeding, lying peacefully in the arms of her mother, while the mother’s life was supported by the ventilator. This child would never know her mother and there would never be another picture of them together. This may have been the last time she would feel her mother’s body. I didn’t ask the husband. Perhaps I thought I would have been overstepping some professional boundary. It didn’t occur to me at the time that eliciting a rare sign to the whole ward round was perhaps not in the family’s interest as much as the last photograph could have been.

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14 | Michelle and the life-support machine

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ichelle was a twenty-four-year-old woman with varicella pneumonia, a rare but devastating complication of chicken pox. She had been in the ICU for a week. She was a school teacher and, with her short blond hair, looked more like eighteen years old than twenty-four. Initially, her partner stayed by her bedside for most of the day and until late evening. We explained, as we do to all relatives and friends, that the ordeal in intensive care could be a marathon more than a 100-metre dash and that he should try to maintain some normality in his life. We emphasised that his visits now were more for his needs than Michelle’s as it was unlikely that she was aware of him being there, and that he would be needed in a more practical way when she recovered and required what could be a long rehabilitation.

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Unfortunately, Michelle had developed many potentially fatal complications as a result of being on a ventilator. Several areas of her lung had ruptured; she had developed septicaemia after drug-resistant organisms spread throughout her body; her muscles and nerves were wasted as a result of being critically ill; and clots had developed in her leg as a result of immobility. The clots, or deep venous thromboses, are the same as those that occur in airline passengers as a result of prolonged immobility, especially those squeezed into an economy class seat. Despite all this, Michelle was being kept alive, thanks to a machine whose history dates back to the birth of intensive care: the respirator or ventilator as it is also known. There are arguments about where the first intensive care unit was developed; but most agree it was probably in Copenhagen around the early 1950s, at the height of an epidemic of the infectious disease poliomyelitis. Patients were dying because their diaphragm was so weakened by the disease process that it didn’t have sufficient power to perform its normal function as a bellows, moving the lungs up and down. The diaphragm normally contracts into the abdomen as we breathe in, pulling the lungs down with it, creating a vacuum inside the lungs, causing air to rush in through the mouth and nose and inflating the lungs with precious oxygen. The diaphragm then relaxes, moving back into the chest, pushing air out of the lungs. If you want to observe breathing, watch a person’s abdomen, not their chest. The abdomen will rise slightly as the person breathes in – inspiration – and then recede as the diaphragm moves back into the chest – expiration. I once saw a cowboy in a western film hold a mirror michelle and the life- support machine

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over a colleague’s mouth in order to detect feeble condensation as a sign of life in someone who, if you watched his abdomen carefully, was obviously still breathing. He declared him dead nonetheless. Back in Copenhagen, a physician called Henry Lassen was caring for patients with poliomyelitis in a large hospital. Because the patients were dying as a result of not being able to breathe effectively, he asked the advice of an anaesthetist colleague, Bjorn Ibsen, about how one could artificially inflate the lungs as a temporary measure, until the diaphragm regained its power when the poliomyelitis abated. Ibsen suggested using a technique that he employed every day while anaesthetising patients – a tube inserted into the trachea or windpipe, connected to an inflatable bag, supplied with oxygen. The anaesthetist would compress the bag by hand every 5–10 seconds, inflating the lungs and simulating a normal breath. While it was possible for an anaesthetist to manually inflate lungs for several hours during surgery, maintaining artificial ventilation for days or even weeks was another matter. So Lassen indentured medical students to squeeze the bags connected to these patients, working in eighthour shifts over the next few months. In a famous article published in the prestigious medical journal The Lancet in 1953, Lassen and his colleagues recorded their impressive results, halving mortality from 80 per cent to 40 per cent. The specialty of intensive care was born. The next challenge was to develop a machine to do what the medical students did: keep the patient breathing. The result was the ventilator. Initially, it consisted of a large rubber bellows, squeezed up and down by a metal arm with adjustable 14 8

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gearing. You could pre-set the rate of breathing and the depth of the breath. Nowadays, the gas flow is controlled within a beautifully engineered machine. You only see the gauges and dials on the front, not the gas being directed to the patient in an infinite number of different ways, depending on the patient’s needs. The modern ventilator can even detect when the patient wants a breath and can top it up until it reaches an optimal level. Like modern cars, the secrets are in the software driving the machine, not in the mechanics. There is little room for amateur tinkering with these. Because of their seemingly miraculous ability to sustain breathing, ventilators are sometimes called life-support machines. This term can cause all sorts of problems when it comes time to disconnect the machine from the patient, when there is no longer any hope of recovery. Patients on a ventilator also need intensive care in many other ways while the disease or condition abates, as nature takes its course. Intravenous fluids have to be given to maintain hydration. Small metal, and later plastic, tubes (or cannulae) were designed

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to be inserted into veins as a way of giving these fluids, as well as providing a portal for the administration of intravenous drugs. Larger plastic tubes are placed in the nose through into the stomach to facilitate feeding with liquid nutrition. Other tubes can be placed into the bladder to enable urine to drain away freely. All manner of other machines have been developed to keep patients alive while their illness runs its course. The speciality of intensive care was developed around learning how to maintain and support the body’s normal functions while the patient recovered from serious illness. Fortunately, patients are usually unconscious as a result of their disease or condition or because heavy sedation is given to relieve pain and suffering. The next challenge, which we are still grappling with, is to recognise which patients will have a reasonable chance of a good recovery in order to justify the enormous effort and expense associated with intensive care. Doctors who specialise in intensive care are known as intensivists. The first intensivists were usually anaesthetists, because they already knew about artificial ventilation and had the technical skills needed to insert the bits of plastic into various parts of the body. Soon, specific journals and textbooks of intensive care were created to share knowledge around the burgeoning specialty. Conferences helped consolidate a growing community of medical and nursing specialists. Ventilators were and are the key to the uniqueness of intensive care. They initially marked the speciality as ‘high tech’, with its own mystique. Intensive care was the place where patients went when everything else had failed. Initially this threatened other specialist physicians because, up until then, they were the 15 0

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last port of call. They were referred the most difficult and challenging patients, requiring a specialist opinion, when everything else had failed. The intensive care unit replaced specialist physicians in the hierarchy of illness. Ventilators played a key role in keeping the patient alive long enough to learn what else could be done to maintain life. It soon became apparent that problems developed while you were keeping the patient alive, including skin breakdown and ulcers; muscle wasting and weight loss; infections as a result of invasive lines; not to mention the devastating psychological and physical problems associated with the recovery period, both in hospital and at home. To some extent, intensive care attracts clinicians interested in gadgets, machines and controls. The patients are usually either too sick to talk or are unconscious as a result of their condition or because of heavy sedation. Your standing as an intensivist is still determined by how well you can artificially ventilate a patient. The challenge is to provide enough oxygen to the body without damaging the lungs in the process. This is both an art and a science. You must have a feel for the lungs and a respect for their fragility. The lungs consist of millions of tiny bubbles or alveoli, each like a tiny soap bubble. The surface area of all of these bubbles in one lung amounts to the size of a tennis court. For some reason, I’ve always remembered that piece of trivia from early physiology lectures and always marvel at the lung’s capacity, when I see a tennis court. The purpose of such a large surface area is to enable the body to efficiently exchange gases – absorbing oxygen to keep the body’s delicate machinery operating and excreting carbon dioxide, produced as a result of the metabolism. michelle and the life- support machine

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Running alongside each alveolus is a tiny capillary, the smallest branch of the circulation. Dark, de-oxygenated blood is pumped by the heart to those capillaries. This blood has just returned from circulating around the body – its oxygen content is low and its carbon dioxide content high. As blood flows past the alveoli, it picks up the oxygen contained within the bubble and at the same time discharges its carbon dioxide. When we exercise, more carbon dioxide is produced and more oxygen is needed. Blood flow past the alveoli becomes faster and the breathing rate increases. A beautiful system, delicately balanced. As a result of this exchange within the lungs, the blood changes colour to a bright crimson, bringing joy to the hearts of intensivists and a sigh of relief to the patient’s tissues. If the lungs aren’t working efficiently, the blood remains dark blue, giving the patient’s skin a purplish tone, called cyanosis, striking fear into the heart of even the most experienced intensivists. Michelle had pneumonia, an infection of the alveoli. The delicate bubbles in her lungs were filled with infected material as a result of invading organisms. The body pours fluid into the alveoli in an attempt to negate the effect of the organisms. The fluid contains anti-bacterial chemicals and cells that engulf the organisms – a life and death struggle is underway. Every time the air in one of Michelle’s alveoli was replaced by infected fluid, it was effectively put out of action. Blood flowing past those particular alveoli was not exposed to their oxygen and therefore remained dark or deoxygenated, and at the same time, the carbon dioxide remained trapped in the circulation. On a small scale this doesn’t matter. The patient 15 2

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breathes faster and the blood flows faster in order to allow the remaining normal alveoli to compensate for the ones affected by the pathological process. In Michelle’s case, the pneumonia was spreading rapidly. Her lungs, which normally would appear a healthy black on chest x-rays as a result of good air entry to the alveoli, were turning white as air was replaced by the pneumonic process. Standing by Michelle’s bedside, I knew we were running out of tricks. We had turned the oxygen up to maximum levels and had reached the limits of what the ventilator could do. There just weren’t enough normally functioning alveoli left. Professor Luciano Gattino from Milan in Italy, one of the great intensivists, has a feel for the delicate nature of the lungs. In the 1990s, he coined the term ‘piccolo’ lungs to describe the remaining tiny normal lungs, after a severe disease such as pneumonia has obliterated most of the alveoli. The small number of normal alveoli left becomes critical when deciding how to adjust the ventilator. Michelle had piccolo lungs, approximately the same number of normal alveoli as a six-year-old. Six-year-old’s lungs can barely support an adult and the pneumonia was still spreading. The other important feature of the piccolo lung is related to how much gas to use for each breath – the so-called tidal volume. If we delivered a normal tidal volume to Michelle’s six-year-old lungs, we would quickly shatter the few remaining normal alveoli. It seems incredible that this discovery did not occurred to our speciality until relatively recently. In the 1970s and 1980s and well into the 1990s, we routinely ventilated patients to death – they died as a result of our treatment, not the underlying michelle and the life- support machine

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disease. We mindlessly used tidal volumes consistent with a normal adult, rather than adjusting the breath according to the actual number of ventilatable alveoli. Ironically, a Canadian doctor called Macklin had meticulously described the effects of over-ventilation in hundreds of cats during the 1930s. But who in the 1930s could have predicted the significance of experiments involving over-inflating and bursting the lungs of cats. An anaesthetist friend and colleague of mine, Dr Nicholas Newton, who dislikes intensive care medicine, showed me the Macklin article in the late 1970s and said, ‘This is what you do to your patients’ lungs; you shatter all those beautiful little alveoli and kill your patients; you cause the problem, not the patients’ disease. Lungs were designed to suck in air, not to have it blown in under pressure.’ Nicholas was right but it wasn’t until the 1990s that over-ventilation and piccolo lungs became universally accepted concepts. Even though we had set the ventilator to deliver small tidal volumes at very low pressures to Michelle’s lungs, we were still shattering her few remaining alveoli. At the same time, the tidal volumes were so low they could barely sustain her need for oxygen. We seriously considered the next option, putting her on cardiopulmonary bypass – taking over the function of the heart and lungs totally until the disease abated and the lungs repaired themselves. Cardiopulmonary bypass was initially developed to maintain the vital functions of patients having cardiac surgery. A beating heart is hard to operate on, but life cannot be maintained without it. The cardiopulmonary bypass machine is a pump that temporarily takes over the role of the heart, pumping the blood past a membrane which delivers oxygen to it. The pump then 15 4

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drives the blood around the body. As with all machines, it is crude compared to the real thing, but it can temporarily, even for days at a time, keep someone alive. As we were preparing for this next step, which is extremely labour intensive and hazardous, Michelle’s condition stabilised. It remained critical and life threatening but it wasn’t worsening. It’s always reassuring to know you have one more trick up your sleeve, especially in the case of a young woman with a disease from which she could recover totally, if she could only survive the acute phase. Over the next few weeks, the pneumonia in her lungs receded. The fluid began to move out of the alveoli to be either reabsorbed into the capillaries or coughed up. The shattered lungs gradually repaired themselves and after three weeks she was able to survive without the ventilator. Much later, Michelle would come back to see the staff she had formed a bond with during her stay in the ICU. She also had a need to see the place where nearly a month of her life was spent, of which she had no memory; the place where she almost died. She told us that she was still suffering from the nightmares and anxiety that patients who have been critically ill often suffer, leaving them with deep-seated and irrational fears that they don’t understand and which haunt them for months and sometimes even years. But she was alive.

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15 | Some ethical issues

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heresa was a seventy-year-old woman who came to the ICU with a long history of diabetes, high blood pressure, blocked coronary arteries and heart failure. One coronary artery was able to be unblocked – the remainder were not. Her heart improved marginally after the unblocking, but not enough to sustain her life. One hour earlier she had expressed her desperation in the shaky handwriting of those who are on ventilators and cannot speak. Every test was performed to exclude any further potentially reversible abnormalities in her heart, but there were none. The heart failure was so severe that if the ventilator pressure was reduced, bloodstained, frothy sputum poured out of her lungs. The heart was not strong enough to pump blood out of its chamber (or ventricle) and, as a result, pressure in the over15 6

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distended ventricle was transmitted back into the lungs, forcing blood and plasma out of small blood vessels and into the lungs. The bloodstained liquid then poured up the windpipe into the ventilator tubing. The ventilator pressure could not counteract the pressure pushing the fluid from the circulation and into her lungs. Theresa’s family did not want her to be sedated. They wanted to reassure her and talk to her. Bloody fluid was spraying out of the ventilator valves and hitting the walls. She was blue, panicking, staring wide eyed – terrified. The relatives were not there. I sedated her and explained to the relatives that I couldn’t watch her drowning in her own blood. They had a conference and agreed to leave her sedated. I had made what I thought was a medically justified and humane decision, but it had to be approved by the patient’s

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children. They demanded that ‘everything had to be done’ for their mother. Everything was being done but to no avail. It was one of those difficult situations often encountered in the ICU: the ventilator was temporarily maintaining Theresa’s life but it was not curing her underlying condition. Relatives, given the choice without an adequate explanation, will sometimes opt for continuing ventilation, hoping for a miracle. The matter becomes even more complicated by the inherent uncertainty in medicine. It didn’t matter to these relatives that in this case the eventual outcome was about as certain as it could be. Most relatives do not want their loved ones to die and they, quite predictably, are uncomfortable with making the decision to cease the life of that person, if it is phrased in such a way that they feel they are being asked permission for us to end their loved one’s life. Sometimes issues around the dying process are easy. For example, when we are able to diagnose brain death, then it follows that the body is dead, despite the fact that we can temporarily delay the death of some organs, such as the heart and lungs. Even in an uncontested area such as brain death, it is difficult to explain to relatives that their loved one is legally dead. The person looks exactly as they did in life, is warm to the touch, with their chest going up and down with each breath from the ventilator. Nevertheless, society and more importantly, the law in many countries, have agreed that brain death is the same as death as a result of the heart stopping. Once the diagnosis of brain death is made – and it’s not difficult – the doctor can look up, quietly shake his or her head, avoiding direct eye contact with relatives, in much the same way 15 8

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as doctors used to do after feeling for a nonexistent pulse or holding a mirror over the mouth. To declare someone brain dead, you first of all must have an underlying diagnosis or reason for the death of the brain, such as a severe head injury or haemorrhage. The patient must not have any condition which could simulate brain death, such as a very low temperature, a severe disturbance of the body’s normal metabolism, or having been administered drugs such as muscle paralysing agents or large doses of sedatives. Against this background, six reflexes are tested. The reflexes are similar to the knee jerk elicited when you strike just below the kneecap with a percussion hammer and watch the leg move. The principle of a reflex is to test whether the nerve receiving the stimulus, such as the hammer blow to the knee, is connected appropriately to the nerve which responds, such as the one making the leg jerk. The nerve receiving the stimulus is the sensory or afferent nerve and the nerve responding is the motor or efferent nerve. In the case of suspected brain death, you are really testing the brain stem, where the most basic functions such as breathing and heartbeat reside. It is assumed that if this part of the brain is dead, then the complex higher functions are also nonexistent. There are one or two exceptions to this assumption. That’s why an underlying diagnosis is essential. One example of this exception is known as locked-in-syndrome, where the brain stem functions are destroyed by events such as a stroke, but the higher functions such as thinking are intact. There couldn’t be many conditions worse than being totally paralysed, unable to breathe, but being totally aware of everything that’s going on. Obviously, it would only be temporary, as life is not possible if you can’t some ethical issues

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breathe. Nevertheless, there have been cases reported where a patient with locked-in-syndrome has been supported long-term on a ventilator. Their only means of communication might be eye blinking, and sometimes even this ability can be lost. All six brain stem reflexes tested must be negative. Light is shone in the pupil and there must be no contraction of the pupil. The eyeball is gently stroked with strands of cotton wool and there must be no blinking. A catheter is inserted into the tube connecting the patient’s lung with the ventilator. This would normally elicit severe coughing, like a small piece of food going down the wrong way. A painful stimulus is applied above the neck and a response below the neck is looked for. Alternatively, a painful stimulus is applied below the neck and signs of facial grimacing are watched for. In other words, the stimulus must go up or down through a functioning brain in order to elicit a reflex. Sometimes local reflexes can occur, such as a bizarre movement of the hand or foot if it is stimulated, even when the brain is dead – in much the same way that your hand rapidly withdraws from heat, even before your brain registers that something is hot. This local reflex can be disconcerting when you are testing for brain death, as it appears as if the patient is registering and responding to stimulation, rather than simply being a local complex reflex. The fifth reflex is elicited by moving the head from side to side. Eye movement normally lags behind the head movement. When the brain is dead, the eyes stare straight ahead, supposedly the same as when you turn a doll’s head. It is sometimes called the ‘doll’s head sign’. This test can also be conducted by squirting ice-cold water into the ear and watching for eye movement. The final reflex involves temporarily disconnect16 0

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ing the ventilator in order to see whether the patient can breathe by themselves. If not, and all five other reflexes are negative, and the preconditions are satisfied, the patient is pronounced legally dead. Relatives can be told this with certainty and the distressing issue of possible organ donation can be addressed. Thus, brain death is no longer a problem for many societies or for those working in intensive care. However, the diagnosis of dying is. How do we know when someone is dying? I mean imminently dying within the next few hours or days, and when no currently available treatment can reverse the process. The short answer is rarely with absolute certainty. The matter is further compounded by the way the dying or living process is being impeded or suspended by the sort of treatment we can offer in the ICU. We have the ability to escalate treatment and temporarily sustain life with drugs, just as we can de-escalate our support when there is no longer any hope of survival. Even if we could predict with reasonable accuracy who is dying, what are the next steps? Words are bandied around in order to provide a framework for decision making in medicine. Beneficence (to be of benefit) and non-maleficence (to do no harm) are part of the Hippocratic Oath all doctors make. Between the meanings of both words there is enough room to justify almost any approach to dying, including euthanasia. In the best sense of these words, medicine aims to restore health where possible and/ or to relieve suffering, including facilitating a peaceful, dignified and pain-free death. Other interpretations of the same words have inspired an ethical, philosophical and legal industry. One school of thought has added two other words to form the sosome ethical issues

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called ‘four principles’, which supposedly provide the framework for all ethical decision making in medicine. As well as beneficence and non-maleficence, the four principles include two other guiding principles: autonomy and distributive justice Autonomy refers to the right of patients to choose or refuse treatment and distributive justice concerns the distribution of scarce health resources in a fair and equitable way. These principles have little relevance to clinical decision making. How do you balance distributive justice and non-maleficence when, for example, you are considering a life-saving liver transplant at great cost, when in many countries, including my own, there are major health challenges which can be addressed at a

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fraction of the cost of performing the liver transplant? How does a clinician integrate the four ethical principles into the hundreds of practical decisions that have to be made at the bedside during the course of a day? How far should we go in sustaining life when there is little hope? The words ‘heroic measures’ and ‘ordinary measures’ can easily be used by different people to mean the same thing. Defining the word heroic is slippery, depending on the availability of the measures, how much they cost and whether the patient or state can afford them. What is heroic today could easily become ordinary tomorrow. Moreover, the word heroic loses its currency in a society where medical advances are widely acclaimed by enthusiastic researchers and an excited media. Withdrawing treatment implies complete or partial removal of measures that are sustaining life. Withholding treatment is not escalating treatment past an agreed point. Jewish law, for example, allows withholding but not withdrawing treatment. The two words could, of course, have the same meaning. If treatment has been escalated to a certain point, followed by agreement to withhold further treatment, this same point could coincide with a decision to withdraw in another patient. Just to emphasise the slipperiness of some of these definitions and their interpretations, we could explore how Jewish law gets around the difference between withholding (allowed) and withdrawing (not allowed) active medical management. Continuous medical management, such as a drug infusion, cannot be withdrawn. A respirator intermittently expands a patient’s lungs in order to keep a ventilatordependent patient alive. However, breathing is not continuous. Therefore, if you gradually increase the times between inflating some ethical issues

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the lungs until breathing almost ceases, it is not considered to be withdrawing life support. Ventilators are specifically made in Israel to enable them to do this. The net result of stopping life support, whether by turning off a ventilator or gradually decreasing the number of breaths it delivers is, of course, the same; the patient dies. To add to the potentially wide interpretation of these matters, words such as ‘autonomy’ have little meaning in intensive care, as the patient is usually unconscious. Friends and relatives are used as surrogates to act on the patient’s behalf. Legally, in some countries, this is the nearest relative. This may reassure many, but there may be others who feel anxious at the prospect. ‘Advanced directives’ are aimed at ensuring autonomy when you are no longer autonomous. Take the decision to not be placed on a life-support machine. Not many of us would agree to a prolonged and painful dying process, supported by machines during the last few days of life. However, life support for twenty-four hours after a minor and totally reversible surgical complication may guarantee you a return to your previous life after discharge from the ICU. Severe trauma, especially if brain injury has not occurred, can these days be managed in intensive care for a week or two, followed by a return to an almost normal life. Similarly, severe infections can be cured with antibiotics but support with machines and drugs is required until the antibiotics control the infection. Of course, other less than ideal outcomes are possible after life support and this is why people are quite rightly concerned. Outcomes may vary from total dependence in a vegetative state to having a mild limp. Perhaps the chances of a 16 4

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good outcome, and what that means in the patient’s own words, should be included in the advance directive. In view of the uncertainties and wide variation across illnesses, it is almost impossible to capture what someone means by ‘no life support’. A huge document could be written around all the ‘ifs’ and ‘buts’ for each individual and even then, you may not capture the decision each individual would want. The decisions may, of course, also change during the course of the illness, when the odds of surviving intact would be changing all the time. The probable and possible outcomes contemplated at a certain age, and while in perfect health, may also change. Many patients who had concerns about aggressive life-sustaining treatment are grateful when they recover. How many of us have heard our friends say as adolescents, that they intend living life to the full – probably meaning in terms of things like sex, drugs and rock ’n roll, followed by a pledge to end their life at some time in their early thirties; which at the time was considered over the hill. Old age and chronic illness is beyond the comprehension of most adolescents. Other patients suffer depression, insomnia, unemployment and sometimes, post-traumatic stress disorder after long periods of support in an ICU and some state that they would have rather died at the time. Nevertheless, writing an advanced directive demanding no heroic measures in the face of futility informs the treating clinicians of a broad intent and is a good basis for decision making when a patient is critically ill with little hope of a worthwhile recovery. Theresa’s family watched every movement of the staff, just in some ethical issues

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case treatment was withdrawn surreptitiously. Theresa was dying and possibly suffering during that process. I had suggested that we cease active treatment and make her comfortable. The family would have no part in this and were conducting a twenty-fourhour vigil in order to ensure their wishes were carried out. I spent many hours explaining the nature of her disease; the temporising function of the ventilator; and the failure to find any treatable cause for her heart condition. I spelt the situation out plainly. I explained in detail that eventually, even the ventilator couldn’t support the dying heart, and that other vital organs would also fail. Death was inevitable. I was met with a response which is increasingly common among relatives: ‘Thanks for the information; we’ll discuss what you’ve said and let you know what our decision is’. I explained again that there was no hope. Relatives frequently then say, ‘Are you 100 per cent sure?’ I look momentarily uncomfortable and mutter something about ‘almost’ or ‘99.99 per cent’, as you are always obliged to do in the world of medicine, where nothing is certain. That’s enough for them to say, ‘Thanks, but we’ll take the option of continuing treatment’. I try not to make the explanation sound like an option and ponder on how much easier things were when medicine was more paternalistic. Not many countries have sorted out where to go next. Japanese law makes it almost impossible to stop treatment even if the patient’s brain is dead. Taiwanese law forbids withdrawal of treatment in any patient, with the threat of severe penalties for any doctor convicted of such an offence. It has one the highest numbers of intensive care beds in the world, causing untold suffering for patients and relatives, as well as an enor16 6

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mous cost to the state. Patients are often sustained on ventilators in general wards, with very few nurses looking after many seriously ill patients and with none of the nurses trained in intensive care. Patients then die of neglect and not as a result of an active decision to withdraw treatment. Most countries circumvent, in their own way, the difficult issue of the increasing number of terminally ill patients on life-support treatment in intensive care units. Have the relatives the right to demand indefinite life support? Almost a week after we first put Theresa on a ventilator, she was still there. She was on maximum treatment, and it was just enough to keep her alive. The relatives knew which drugs kept her blood pressure up; they watched the monitor for signs of deterioration and suggest more fluid, more drugs and the like. They knew about dialysis if the kidneys failed and were already demanding it in anticipation of further deterioration. The nurses and junior doctors were upset and frustrated. I was making them work their whole shift supporting a dying woman with no hope of surviving. They knew it was futile. They saw her suffer before sedation was commenced and were now faced by hostile relatives, watching their every move. We rarely get into this position. Usually the approach of compassionately expressing our feelings about prognosis and honestly explaining our plans and the basis on which they have been made is enough to reassure relatives. If necessary, we ask the family if further treatment under these circumstances is really what their relative would want. My colleagues working in ICUs around the world increasingly have to deal with relatives who demand that we use the machines to prolong life, rather than to use them for their some ethical issues

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initial purpose – to sustain life while we explore definitive treatment options. Theresa’s family demanded at least half an hour of my time each day for family conferences. This sounds like a reasonable request for such an important issue. However, sometimes I am looking after twenty ICU beds. If I did the same for every patient’s family, this would add up to ten hours work before I saw a single patient – quite apart from my other responsibilities such as teaching, learning and research, as well as the increasing demands of administration.

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In the middle of this situation, I reflected on the irrelevance of the four principles of beneficence, non-maleficence, autonomy and distributive justice. They are of little help when considering withdrawing and withholding treatment, futility, dying, heroic measures, explanations, transparency, honesty and compassion. 16 8

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No-one has tested, or indeed wants to test, whether relatives can demand indefinite use of society’s resources for their loved ones who are dying. Nor what are the rights of professionals when they believe they are being forced to deliver futile treatment. And what rights others in our society have when resources are increasingly diverted to dying patients in the ICU. I don’t believe these questions can be answered by lawyers, ethicists, committees or the general manager of the hospital. Increasingly, the media exposes cases where the medical profession has taken a decision to withdraw treatment on what they believe are medical grounds, against the relatives’ wishes; or, at the opposite end of the spectrum, where doctors have refused to cease treatment, when that is what the relatives wish. Both versions usually imply that the relatives have been victims of a medical profession that has too much power and too little accountability. Ethicists, religious groups and lawyers hover around these issues, creating a new industry, like grief counsellors after major disasters, when food and shelter are what is most needed. Health administrators and politicians find it difficult to participate in these discussions, as they could be accused of simply wanting to save money. Society needs to be included in a way it hasn’t been before – debate needs to be open and frank. No one can duck the nasty issue of cost, as we can provide more and more expensive ways of maintaining life in the face of futility. Broad agreement around individual choice and what society can sustain needs to be nutted out.

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16 | When the muscles won’t work

I

can imagine few medical conditions as excruciating as ‘locked-in syndrome’. The thinking and awareness part of the brain is normal but the only parts of your body that can move are the eyes and eyelids. You are totally paralysed and unable to feel anything. Communication is by blinking – one blink for yes, two for no; all of a patient’s feelings and questions would have to be distilled into one or two blinks. I had never seen a case, but had often thought about how one might break the news to the patient. The condition is usually irreversible. Looking into the patient’s eyes for all the subtle clues that accompany language would be difficult, as you would be confronting fear and despair as well as looking for signs of understanding of what you were attempting to explain. After explaining the disease and its

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prognosis, you would have to look for one or two blinks when you asked, ‘Do you want to live under such conditions?’ Then there would be the practical issues of withdrawing treatment and turning the ventilator off and how much the person wished to be sedated. All of their feelings and questions would have to be distilled into one or two blinks. If they had no feeling below their neck, dying may not be an unpleasant experience. Perhaps they would register something unpleasant while their heart gradually slowed and then stopped. You would need to ask how they wanted this final process to be conducted. Eventually, I had to face such a case when a man with botulism arrived in the unit. The cause of this man’s problem was not immediately obvious. When he was first admitted to the ICU, he was moving but his breathing was shallow. He then rapidly became totally paralysed. There are other rare causes of such a clinical picture but these didn’t fit in with the way he presented to us. When his pupils became fixed and dilated, we thought he must have had a massive stroke, but there was no evidence of any problem on the CT scan. It also seemed to us that he was aware in some strange way, even though he literally couldn’t move a muscle. We decided to do an EEG, a test of brain function, as opposed to the CT scan, which demonstrates brain architecture. Amazingly, the EEG was normal. There was an aware person trapped in a seemingly lifeless body. It was time for us to begin thinking about other opinions. As often happens with the process of making a diagnosis, someone mentioned botulism, more as part of a stream of consciousness than as a result of deductive reasoning. We looked up the books and asked others about botulism and decided it when the muscles won’t work

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was worth testing for. We soon learnt that there is no specific test for the bacteria, as it has usually disappeared by the time its damage has occurred, leaving the toxin behind. To test for the toxin, serum from the patient’s blood needs to be injected into the abdomens of mice. If the mice die in much the same way as the patient would have, then there is a high likelihood that the diagnosis is botulism. In this case, the death of the mice confirmed the diagnosis. The only Australian source of the antitoxin was out of date and the National Disease Center in Atlanta, Georgia in the USA was reluctant to spare any of their small supply. In any case, it appeared that the antitoxin had only limited effectiveness and was used before the specialty of intensive care had developed to the stage where patients could be kept alive for weeks or even months while the toxin naturally disappeared. The term botulism comes from the Latin word for sausage – botulus. It was first described in Germany as an illness resulting from eating spoiled sausage. A particularly virulent toxin, produced by bacteria, it paralyses nerve transmissions throughout the body to such an extent that, in serious cases, not even the eyes can move. In fact, the pupils, one of the most important signallers of brain death, can also become paralysed. Botulism can simulate death, more than any almost any other disease. Within the seemingly lifeless body is a normal, functioning brain. The patient’s other organs are also normal. In other words, if we artificially ventilated the lungs, the patient could be kept alive until the toxin wore off. People came from near and far to look at our Snow White. 17 2

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The next challenge was to find the ‘apple’ our patient had eaten. The public health authorities were informed. After consulting their manuals to find policies surrounding a disease they hadn’t seen for decades, the authorities visited the patient’s home. The patient lived in a caravan park, often a marker in itself of poverty. The public health authorities got the keys from his friend in the adjoining caravan and inspected it. Surprisingly, they found no food to test for toxin, and returned the keys to his neighbour for safekeeping. The authorities explained the purpose of their visit and were horrified when the man explained that, on hearing how ill his friend was, he had eaten all his food. He added that they had a close relationship and shared everything. Fearing the neighbour would go the same way as the mice, he was rushed to hospital for observation. In the meantime, the patient with botulism improved and was eventually discharged,

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with no residual problems. No source for the toxin was ever found and presumably both are back in their caravans, alive and talking about their experiences. Some time after the patient with botulism, we had two other patients in the unit with normal brain function, but with extreme muscle weakness. Both of these patients were young – one a twenty-four-year-old man and the other a sixteen-year-old girl. The man, Mark, had Guillain-Barre syndrome, a syndrome affecting mainly the motor or efferent nerves, typically in the form of an ascending paralysis, starting in the feet and working up the body, sometimes, as in Mark’s case, involving the facial muscles. He could just lift his arms, fingers and move his lips. His diaphragm was paralysed, so he had to be artificially ventilated. Emily, on the other side of the unit, had myasthenia gravis. This disease involves the junction where the nerve meets the muscle. The spark cannot jump across the small electrical gap and as a result, the muscles cannot move according to the brain’s wishes. In determining the cause of these sorts of conditions, you need to work your way down from the brain to the muscle, taking into account all the nerve connections in between. The brain receives and sends its messages via the spinal cord. The spinal cord in turn is connected to nerves, which also receive and send signals. The nerves receiving signals are called afferent pathways. Afferent pathways receive signals from the outside world that include sensations such as temperature, movement, position, pain, touch, hearing, taste, sight and smell. Your brain is thus kept constantly aware of what is happening around you. There is obviously a 174

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sophisticated sorting process going on within the brain, screening the messages carefully. Unimportant background messages such as the nature of the four walls or scenery around you are ignored unless you decide that you want to concentrate on one aspect of it. On the other hand, other sensations are highlighted, such as impending danger or the presence of a potential mate. The efferent pathways, on the other hand, send messages out; mainly to control muscle movement. There are conditions and diseases that can affect any part of the efferent and afferent pathways; from the origins of nerves in the brain to their fine and specialised endings on the muscle, as well as all the diseases of the muscles themselves. These conditions include spinal cord transection as a result of trauma, resulting in quadriplegia (paralysis and lack of feeling in all four limbs) or paraplegia (paralysis and lack of feeling in the legs). Both Mark and Emily were fully conscious, but almost totally paralysed. Mark would almost certainly recover but this could take weeks or months, or even longer. Emily would need long-term drug treatment but eventually should be able to function almost normally. The challenge for the ICU staff was to remember that both patients were conscious and alert, but resembled all the other unconscious patients who were being supported on machines and, as a result of their illness or because of their sedation, were unconscious and unaware. There is a tendency for us to talk over patients; speaking in clinical terms about their condition in a way that could easily make them anxious and disturbed. Because of the extensive weakness of their muscles, Mark and Emily lacked strength when the muscles won’t work

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even in their eye muscles and this made them look drowsy or even asleep. Communicating with a patient who cannot talk and can barely move is time consuming and frustrating. Mark spelt words on a sheet of paper with a barely controllable hand movement and weakly raised his thumbs when we guessed the word, like a game of charades. The ward round was the time of day when he needed to ask all his questions and express any anxiety. He couldn’t sleep; he was terrified that the ventilator would fail or malfunction and he had deep-seated, severe pain. He wanted to know when he would get better and whether his recovery would be total. We sometimes have up to twenty other patients to see – thirty extra minutes communicating with Mark was essential, but how were we to finish the round, do all the work that results from the decisions made on the round; speak to relatives and friends; attend to the new patients and discharge the old ones. We would bid a lame farewell to Mark and tell him ‘things are coming along well’, when in reality, he hadn’t improved at all. After one ward round, I spoke to the nursing staff who spent all their time with the patient and we reminded each other of the importance of communicating and explaining with such patients. They already knew this, of course, but they humoured me. We set up a television and encouraged Mark’s friends and relatives to visit often, explaining that his weakness may not equate with boredom or sleepiness and that they needed to talk to him about all sorts of issues. One-way communication is an art form. Initially, it’s hard not to be patronising, avoiding the difficult topics such as what was going to happen to him. But it’s not hard to imagine that this is what would be going through most 17 6

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of our minds and that is what you would like to have explained. I tried to be honest with Mark and said, ‘Things are getting better but this disease can sometimes cause almost total paralysis for a year or more… most people make a good recovery’. Even this was not exactly true. We now know that residual abnormalities such as weakness in some muscles can be permanent in patients who have had Guillain-Barre. We also know that being supported by a ventilator for a long period of time can result in serious complications such as pneumonia, which can itself result in severe complications and death. Did he want to know all this? I’m not sure; it probably varies from individual to individual. But how are you to tell when there is no feedback, not even enough muscle strength to make facial expressions or squeeze fingers? I resorted to thinking, ‘Well, what would I like in this situation?’: a position with all sorts of value judgments but at least one where you are trying to acknowledge that the patient has needs and feelings. Mark could just form shapes of words with his lips, so we gave him a device which looks and sounds like an electric razor. When placed on the neck, its sound is transmitted through the facial structures and when the lips are moved, words can be created. The sound is tuneless and monotonous, like the voice of a dalek from Doctor Who. Nevertheless, there is great relief in when the muscles won’t work

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being able to communicate. The sight of Mark surrounded by machines and making this noise added an unreal element to an already unreal environment. Emily was almost the mirror image of Mark in the distribution and extent of her muscle weakness. She was in the bed opposite Mark and they fought for our only television. Mark eventually had his parents bring in his own. Emily had a tracheostomy, could not move her fingers as strongly as Mark, and hadn’t the strength to move her lips as well as Mark could. She communicated with her eyes, and I was uncomfortable. I mumbled platitudes. I felt anxious at not being able to read the pleading in her eyes, so I tried to tell her exactly where I thought we were. Her eyes looked disappointed but reassured that I was trying to be honest. Talking with the eyes, being honest, gaining her trust, reassuring her; I felt that I still had a lot to learn about these things. Nobody has taught me but that’s no excuse; it’s a matter of basic human interaction. I wondered who has all this knowledge and experience and how it could be taught to us. I told her I was going to explain things to her parents and in doing so, speak over the top of her. I wanted her to listen while I asked her parents to imagine they were their daughter and to ask me what they thought she would ask. I moved on to the next patient, relieved to be moving away from the eyes and on to someone with whom I didn’t have to communicate.

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17 | Pathos

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eing continuously surrounded by critically ill and dying patients in the ICU can be a strain on staff. For each patient and their loved ones, it is a uniquely tragic event. For the staff, it is yet another shift in a place of endless shifts. Excellence of care from the staff ’s point of view comes more from meticulous observation and adjustment of therapy rather than over-empathising or identifying too closely with the personal tragedy of each patient and their loved ones. Staff would soon suffer from empathy burn-out and emotional exhaustion if they over-identified with every patient’s tragedy. I often think how stressful it must be for funeral workers to maintain a solemn look of sympathy all day. They must indulge in secret moments of black humour during breaks and share some of 17 9

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those moments with friends after work. As with intensive care, the humour is accentuated and amplified by contrast with the solemnity of the occasion. Several years ago, I was managing a patient who had suffered a stroke that had caused extensive brain damage. His chances of making any recovery were slim, so slim as to be almost non-existent. He was deeply unconscious and supported on a ventilator. It so happened that he also had renal failure and was dependent on dialysis. Patients with renal failure have a particular appearance, described as sallow, a sickly yellowish complexion, even if they are being kept alive on regular dialysis. Machines can rarely replicate the beautiful and complex organs of the body. The day after his admission, I was asked to talk to a delegation of about eight of his friends. They all had Alan’s same sallow hue. They seemed to simultaneously push their spokesman forward. He explained how Alan had organised the annual trip of the hospital’s dialysis patients to a holiday resort in Spain. Apparently he had arranged everything: the hotel, dialysis facilities in the hotel that would be carefully adjusted to their change in eating and drinking habits, the airline tickets, ground transport, and even a subsidy donated by charities and businesses. He was a brilliant and methodical organiser. The problem was, it 18 0

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was all in his head. He had left little in the way of paperwork, and his brain had now lost its ability to communicate or perhaps even be aware of the information it had stored. I explained that the prognosis was grave and that he was unlikely to ever regain consciousness.

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The spokesman said they understood this but were wondering if we could do one of those electroencephalograms or EEGs and find all the details of the trip. The question in itself epitomised society’s expectations of modern medicine: the impressive-looking machines, daily accounts of new miracle drugs, and the unravelling of the human genome. Similarly, the EEG looks if might be able to record details of brain activity. Twentyfour electrodes are attached to the scalp and brain activity is recorded on large rolls of paper, producing metres of detailed squiggly lines. The problem is that they mean very little. They are sometimes used in the diagnosis of epilepsy and were used in the past to try to determine the cause of unconsciousness; pat h o s

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usually unsuccessfully. The friends all held their breath and looked expectantly at me. I was their last hope. I tried to explain the shortcomings of EEGs and how there was no hope of retrieving the information. Of all people, they would have understood the limits of modern medicine and machines. They understood the difference between dialysis and the radical change in the lives of friends who were lucky enough to have kidney transplantation. There was also the man who was trapped under a soft drink machine that had fallen on him while he was installing it with one of those trolleys with three wheels on its base. At every handover, the story was related and giggled about. Maybe the humour related to the image of his head sticking out at the top of the machine, with his feet and hands being just visible at the sides and bottom; maybe it was the image of his plaintive cries for help and the ridiculousness of explaining how he came to be trapped under the machine. The funny side of the story may have been accentuated by the exhaustion that you sometimes have after working long hours, as well as knowing that he would fully recover. However, there are certain cases where staff, unknowingly, inflict humiliation on a patient. A case in point was a woman recovering from a serious illness, who I noticed one morning looking very distressed. She was quietly weeping, looking into her lap and gently wringing her hands. I asked her if I could help. She slowly shook her head and remained staring into her lap. I concluded that it must be just part of the slow recovery process from serious illness. During this period, patients can be confused and prone to mood swings. I asked the nurse at her 182

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bedside if she knew what the problem was. She did, and was going to discuss the issue with the male nurse who had been looking after the patient earlier that day. It was the patient’s first day out of bed. The male nurse had taken her to the shower room, sat her on a plastic chair, naked, and hosed her, like an elephant in a zoo. It may have been a safe and practical way of washing her. The nurse meant no harm and felt humble when I talked to him later. He was going to apologise and explain to the patient that we would assign female nurses to her from now on, and wash her with a basin and cloth in her bed. She was grateful and apologetic. The staff involved, including myself, reflected on how what seemed to be a practical and routine procedure had humiliated a woman and taken away her last shred of dignity. I try to reassure relatives that, although they may see laughter and hear frivolous comments from the staff in the ICU, this does not represent disrespect for their relatives. Nor does it mean the staff are not concentrating on their jobs. In my experience, most staff in the ICU have well-developed radar for detecting serious problems early and taking appropriate action. They can talk about their latest holiday or what they did the night before while simultaneously performing complex procedures. Relatives often intuitively understand this, especially after they themselves have had to sit by the bedside for several days or weeks. They soon get to know the staff and which patients are new and even how the old ones are going. It’s not just patients who can suffer from the constant tragedy found in ICUs. Every so often the circumstances of a pat h o s

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patient will touch a raw nerve in the most hardened of staff. Each person has a different raw nerve and it is often related to something you can identify within your own life. For example, you may see a child, the same age as one of your own, dying. There was seemingly no raw nerve I could identify with in the patient in Bed 6. It just ambushed me. The man was a large South Sea Islander, approximately fifty years old, with kidney failure. He was admitted to the ICU after suffering a cardiac arrest during an operation to have a vein in his arm fashioned for a chronic dialysis program. The modified vein would accommodate the needle used for dialysis. Like many patients with long-term kidney failure, he had many concurrent problems, including diabetes, high blood pressure and heart disease. He was in a high-risk category for the operation, or more specifically, for the anaesthetic. Towards the end of the operation, 18 4

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his heart rate slowed and then his heart stopped. The patient monitoring information in modern anaesthesia is automatically recorded. The whole story was printed on one piece of paper, including the ten-minute period where the patient had little in the way of blood pressure or adequate blood flow to his body. The operation was temporarily stopped while his heart function was eventually restored with drugs and cardiac massage. By the time I saw him on the ward round, all of his organs had returned to their normal function – apart from the brain. He had not woken up from the anaesthetic in any way at all. It was too early to tell whether there would eventually be any recovery. He was deeply unconscious – not a good sign. If there was no further recovery by seventy-two hours, it was almost certain there would be permanent and severe brain damage. The man’s wife was standing next to her unconscious husband, with her arms around their eldest son’s shoulders. He was eleven years old and his younger sister was seven. The wife had been called in urgently. The problems during the operation were explained to her. Nothing was hidden or distorted. Even so, the explanation didn’t seem to have any impact on either her or her children. I needed to be more blunt and concise with her. False hope would have been cruel. I attempted to translate the intraoperative events into reality for her. I explained that there were no tests that could tell us the extent of brain damage, nor tell us whether he would ever wake up. It was simply a matter of whether he started to open his eyes, recognise us and move in response to commands. If this didn’t happen, he almost certainly would never regain consciousness and would soon die. The woman did not want me to elaborate on any of the events pat h o s

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which had occurred during the operation, so I didn’t. She was not watching her husband, just rhythmically tapping her son’s head while I explained. The boy crept out of his mother’s arms and joined me on the other side of the bed, slowly pushing past me and moving up to close his father’s face. He said very slowly, ‘Dad, Dad’, gently pushing his father’s shoulders and coaxing him, saying, ‘Dad, Dad, you must open your eyes. The doctor says you won’t get better unless you open your eyes.’ There was increasing urgency in his voice, yet he remained quiet and insistent. ‘Dad, Dad, can you squeeze my hand?’ His mother looked at him with all the concern she must have had for her husband as well as for her son’s desperate pleas and said, ‘Come back over here to Mummy. Stop that; you must come back here.’ The boy now had tears streaming down his face and large bubbles of snot expanding and contracting at both nostrils. ‘Dad, Dad’, he said, still quiet and pleading, not desperate in any way. ‘You must open your eyes and squeeze my fingers.’ The tears were welling up in my own eyes and I put my arms around his shoulders, just as his mother had done. His mother was looking distraught, not for her husband, but for the fact that her son might be transgressing some unknown etiquette by crying over his father’s lack of response and for the fact that I was trying to comfort him. Her expectations about the world and her own place in it did not appear to be great. The son suspected he was overstepping some boundary of acceptable behaviour which his mother knew about, and he didn’t. Nevertheless, the desire to have his father wake up and defy the curse I had put on him was greater 18 6

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than the need to be obedient. I excused myself, making some feeble excuse about an appointment I had, and left the other staff to finish the ward round. I was relieved to find solitude in my office, and quietly wept. Treatment was withdrawn from the boy’s father and he died three days later.

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18 | Euphemisms

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drian was the first patient we saw on the ward round each day. He had been in the unit for over two months and his case is an example of how the health system can fail badly. His illness started with weakness and a collapse at home. On admission to hospital, he had generalised wasting and weakness, about which he had written extensively on crumpled and dirty pages which he brought into hospital with him. His writings were often bizarre and he was regarded by the staff in intensive care as being a bit ‘mad’. This value judgment was reinforced by the fact he was a middle-aged man, single, slightly unkempt and unemployed. Putting patients into these sorts of categories helps us to distance ourselves from identifying too closely with our own and the patients’ helplessness. 18 8

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The classification of ‘strange’ or neurotic made it easier for us to dismiss any real illness and shifted responsibility for Adrian’s condition to him, as a result of his unbalanced state. He had strange dietary habits and was extremely wasted, so we tested for all sorts of vitamin deficiencies. In order to be seen to be doing something, we force-fed him for weeks. As he continued to deteriorate, he was put into a second box – cancer of unknown cause. Severe wasting and death can sometimes occur as the result of an occult cancer. Words such as ‘occult’ are used when we don’t know what’s going on. If you are a patient, beware of these words: you may be eventually blamed for the problem, as physicians are sometimes reluctant to say they don’t know. In Adrian’s case, as it turned out, we should have known. We unsuccessfully imaged his body from top to toe looking for the occult cancer. Then he had every other test we could think of in order to give him a diagnosis that was more consistent with his condition. Despite force feeding and replacing vitamins, Adrian continued to waste and we couldn’t identify any cause. Every rare cause was considered, and then more expensive tests were performed. The city’s most prominent neurology hospital was even sent biopsies and tests which, alas, shed no light on what we were dealing with. He couldn’t talk because of the tube in his throat connecting his lungs to the ventilator. In spite of an almost totally paralysed body, his eyes and mind were extremely alert. With his eyes, he challenged us to engage him. We avoided the challenge and he couldn’t emphasise his need with speech or body movement. But you couldn’t mistake his imploring look. He wanted to know what was happening and what his chances of recovery were. euphemisms

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We conveniently reverted to our roles as intensive care doctors and supporters of life, leaving it to the other specialists to explain the reason for the delay in finding a diagnosis, knowing full well that they were not about to do this.

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Someone needed to tell him that, despite all the tests, we didn’t know what was wrong with him and therefore couldn’t offer any treatment, apart from keeping him alive while we continued to do yet more tests. As each day passed, his eyes became more anxious, suspicious, and even resentful. His personal torture needed to be faced. Yet we continued to hide behind ‘medical’ issues and false hopes. He had become an ‘interesting case’; a condition invariably associated with a poor prognosis and usually a euphemism for ‘we haven’t got a clue’. Medical training is focused on the individual doctor treating a single patient, and it still emphasises success, not failure. We 19 0

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are taught how to make a diagnosis. Once a patient has been fitted into a diagnostic box, then the most appropriate treatment is used. Making the diagnosis is the cornerstone of medicine. Treatment is often considered less important than the diagnosis because there often isn’t any beneficial treatment. When I was a medical student, feelings such as grief and pain which can accompany illness (and how to deal with them) were never mentioned. What happens when the patient doesn’t fit into a box or when treatment fails is not a pretty sight. For example, the first thousand or so cases of HIV/AIDS almost certainly weren’t given a diagnostic label. They would not have fitted into any existing box. If you don’t fit into a box, several options are available. The doctor may be open and forthright with you and say that, despite all the tests they have done, there is still no diagnosis. A good doctor will emphasise that this doesn’t negate your complaint. Nevertheless, you have been moved from having signs and symptoms which might have fitted with an existing diagnostic category to the more illegitimate zone of a ‘complaint’. It simply means that we don’t know how it all fits together as yet. The ‘we’ is used if the situation is not clear and the ‘I’ when the doctor has made a diagnosis, especially one associated with a treatment. The lesser doctor will begin a cruel dance, using language that distances him or her from your difficult case. Doctors can even start blaming you in subtle ways; the problem increasingly becomes yours, not theirs. You are informed that, ‘It’s good news – the tests are all normal’. You pretend to be relieved. It is insinuated that the problem doesn’t exist. Even crueller, there may be an implication that the symptoms are being imagined. In either euphemisms

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case, it is clear that you need to go away with your problem and not bother the doctor any more. Even blatant and obvious signs such as rashes, weight loss and fever, all symptoms suffered by the first patients who were HIV positive, can be blamed on the patient if the cluster of signs and symptoms don’t fit into a known box. You become the problem. If pushed, the attending physician can sometimes become irritated, patronising or even angry. Simple statements such as, ‘But I don’t understand what it is’, can become a threat to the doctor. It is often at this point that the word ‘stress’ is introduced. The doctor might ask, ‘Have you been under much “stress” lately?’ or ‘What’s your relationship with your spouse like?’ These questions are usually indicators that your attending physician doesn’t know what’s going on, or is about to place the medical problem firmly in your court, so that you, and not they, will take responsibility for the illness. If the disease is spectacu-

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lar, you become ‘interesting’, if it consists of vague, unseen problems, such as back pain, you may become a ‘malingerer’. Even when you eventually die of whatever it was, such as the young men with AIDS before it had a name, it is unlikely to immediately resonate with the medical profession. Not all physicians are good at saying, ‘I don’t know what’s going on but I’m not going to blame you, nor reject you – we’ll see this through together’. Good physicians will know their own and their profession’s limitations, and share their lack of answers with you. They won’t pretend that we know everything. They will reassure you that, just because your symptoms don’t fit into our existing knowledge, you will not be rejected. Great clinicians will watch how the disease develops, keep an open mind, do more tests and continually remember that their knowledge will only, at best, reflect what is currently known. I suspect that doctors of fifty years ago were trained in the same way. We look back now on their limited diagnostic and therapeutic options in the same way as our colleagues in the future will look back on us. The majority then might have dealt with unknown patient problems in the same convoluted and dishonest way as now. I suspect, despite their kindly looks or sympathetic touch, they still concentrated on diagnostic triumphs rather than the intellectual challenge of not knowing. In Adrian’s case, a dangerous demarcation between the different medical specialties now occurred. Because we did not know what was going on, we referred him to many other specialists and confined ourselves to supporting his life with our machines. The lights around Adrian’s bed were dimmed, because he liked it that euphemisms

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way. It made us even more anonymous and it made it easier for us to hide from his suffering. We examined him each day; concentrating on maintaining his heart and lungs, and keeping his spirits up in a superficial sort of way. We didn’t give him what I suspect he would have wanted most – reassurance and honesty about our failure to diagnose his condition. We would have done more for his spirits if we had looked at the subtle fasciculations or fine twitching in his thigh muscles. This was the key to his diagnosis. Adrian had extensive degeneration of the nerves supplying his muscles. We had thought of it but initially the tests for this condition were negative. The fasciculations would have given us the answer, confirming the old adage in medicine: ‘You miss more by not looking than by not knowing’. Adrian had a terminal and untreatable disease and we had subjected him to the torture of keeping him alive with all sorts of tubes and machines for weeks. The system had failed at many levels, and a patient had suffered and been tormented as a result. I decided to present Adrian’s case at the weekly ‘grand rounds’, the weekly meeting of the hospital’s staff and medical students. Usually these occasions are used to emphasise how clever you are; how you have made a rare diagnosis or saved someone’s life. I wanted to make other points, not at my colleagues’ expense, but to remind all of us of how the system sometimes fails our patients and how the least we could have done was to hold his hand each day and explain what our thoughts were, what the tests were showing and ask him about his concerns. It sounds easy and humane, but somehow our system is not good at admitting and sharing our failure to make progress with diagnoses or 19 4

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treatment. I have encountered the same failings in all the hospitals I have worked in and they are emphasised by the sharing of medical triumphs at the grand rounds – even the term itself implies the sharing of medical success, not confessing failures or uncertainty. In summing up Adrian’s case at the grand rounds, I listed the complications as a result of his treatment in the ICU, including pneumonia, sleep disturbance, pressure sores, persistent wasting, clots in his legs as a result of immobility; and worst of all, the constant anxiety and fear he suffered. I then listed the sixteen diagnoses we had considered. Then the consultations with other specialists: five to cardiology, three to vascular surgery, three to immunology, three to respiratory medicine, one to radiology, three to gastroenterology, fifteen to neurology, three to general surgery, four to psychiatry, three to rehabilitation, and finally two to neurosurgery for biopsies of nerves and muscle. The investigations we performed included many radiological scans, muscle and nerve biopsies, an echocardiogram, hundreds of electrocardiograms, screening tests for all kinds of rarer diseases, a hepatitis screen, vitamin levels, a heavy metal screen in case of poisoning, special radiological screening of his diaphragm, electromyogram testing for muscle function, hundreds of routine haematology and biochemical tests, a bronchoscopy looking into his lungs, a biopsy of the lymph nodes, a barium swallow, and ultrasound to test for clots in his legs. The treatment necessary to keep him alive included artificial ventilation, tube feeding into his stomach, drug infusions to improve his heart function, as well as many lines into large veins in his chest and into arteries in his arms. He had had a euphemisms

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total of forty-two different drugs administered during the fifteen weeks he was in the ICU. Ironically, the notes recorded by a junior doctor in the much smaller hospital where he was first seen, were concise and accurate. The young doctor had concluded that Adrian either had an occult cancer or motor neurone disease. We eventually realised the latter was the correct diagnosis. I personally rang that doctor, explaining Adrian’s clinical course and that his initial observations and conclusions had been sound.

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After sixteen weeks, we were finally able to tell Adrian that he had motor neurone disease, and that there was nothing we could do. Treatment was withdrawn; he was sedated according to his own wishes and died soon after. I had probably challenged some unwritten codes by presenting the case in such a stark way and obviously I couldn’t distance myself from the system that had failed Adrian. Several of my colleagues individually approached me over the next few weeks, all reflective and sharing personal stories similar to the one I had presented. None of this could remove the image of Adrian’s trusting and anxious face that stayed in my mind. It doesn’t matter what his diagnosis was. Suffice to say that he did eventually obtain a diagnostic label. I purged some of my guilt by sitting with him and telling him he had an untreatable disease and that we would eventually withdraw treatment. I held his hand and confessed that I knew about the neglect he had suffered at our hands. I used words like ‘nightmare’ and ‘torture’ in trying to make him understand that I knew what he must have suffered. I lamely apologised. I think his eyes reflected relief at my words. Tears formed and rolled down his cheeks. The eyes and tears were all he had to convey his feelings. I sensed he was so relieved at the understanding of his suffering that he welcomed the impending death after withdrawal of the ventilator. I promised him he wouldn’t suffer any more. Scientists who try to measure the quality of life on a scale of zero (death) to ten (perfect) say that some states of life are assigned a negative value because they are worse than death. euphemisms

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19 | Spectacular successes

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very so often, intensive care delivers the goods and saves people who otherwise would certainly have died. Like a memorable night at the opera, when the singers, ensemble and orchestra work together to create magic, becoming part of something that is more than the sum of its parts – the music and singing soaring to the heavens; so it is every so often in a medical emergency. The timing is perfect; the decisions are bold and faultless. The patient, who one minute was staring at whatever is on the other side, has their vital functions restored and returns to life. Bruce was a good example. He was having a second coronary artery grafting surgery (CAGS) or ‘re-do CAGS’, where the arteries supplying the heart had become blocked again. This is 198

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technically a difficult operation as scar tissue has formed around the previous operation site. The heart is sometimes stuck to the underside of the breastbone or sternum, so that when the sternum is sawn lengthwise, the heart can also be cut. Moreover, these patients are usually older and have a weakened heart because of the decreased blood supply as a result of the chronically blocked arteries. Bruce had had a quadruple bypass – one-upping those people who brag about their triple bypass or claim to have had double pneumonia. (Incidentally, pneumonia often involves both lungs and is therefore ‘double’. Neither the word ‘double’, nor indeed, ‘single’ pneumonia, are terms used in medicine.) Bruce was sixty years old and after a long and difficult procedure, he was wheeled into the ICU, accompanied by the surgeon and anaesthetist, in order to hand over to the intensivist. Just as he was having all his monitoring and lines changed over, his heart stopped and would not respond to the defibrillator. The surgeon grabbed a pair of gloves, cut the wire sutures used to join the sternum back together, put his hand into the patient’s chest, and massaged the heart. Directly squeezing the heart, or internal massage, is much more efficient than the usual external cardiac massage. You could see this by the way the blood pressure on the monitoring screen was well maintained. Meanwhile, the anaesthetist and intensivist, together with the nursing staff, started about six intravenous drug infusions in order to support, or should I say ‘flog’, the failing heart. Eventually, Bruce was stable, but now required renal dialysis to support failing kidneys and an intra-aortic balloon pump to assist a heart which had just suffered a major heart attack or infarction. s p e c ta c u l a r s u c c e s s e s

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The decisions and actions were smooth and carried out without fuss and in a logical manner until the patient was stable. Bruce was only just hanging on. Even when the surgeon attempted to close his chest, his heart ceased to function efficiently so he was left with an open chest, temporarily covered with a dressing. We stopped sedation when he had stabilised and he responded appropriately to commands and recognised where he was. His kidneys had been damaged during the downtime but his brain appeared unaffected. So far, so good.

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Unfortunately, the story did not have a happy ending. The spectacular save was a short-lived one. Bruce did not have enough heart left to support life without the industrial doses of the drugs that he was receiving. This happens in the seriously ill, but you often don’t know these facts at the time of resuscitation. 200

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The woman in Bed 2 was a success of a different kind. The same ingredients were there – timing, excellent nursing, and attention to detail in combination with bold decisions. She was eightythree years old and had a ruptured abdominal aortic aneurysm. The aorta is the major artery in the body. As you age, especially if you are genetically predisposed to such things and have smoked cigarettes, the wall of the aorta in the abdomen weakens and enlarges to form a bulging aneurysm, which will eventually burst. Obviously, rupture of the aneurysm is an emergency because of the rapid blood loss. At eighty-three years, you have considerably less than half the reserves of a young adult. Organs are at risk of severe damage even with minor illnesses or accidents. The woman was rapidly transfused and rushed to the operating theatre, where the bleeding was controlled and the aneurysm repaired. Teamwork is the secret, although surgeons often like to take all the credit. Resuscitation was continued by the anaesthetist, who monitored her vital signs during the whole operation and then transferred her back to the ICU, where she was sitting up and talking two days later. There was no room for error and it gave all of us pleasure to see her do so well. Sometimes, it’s good to just indulge in a job well done. We often go through the motions in such cases, knowing that we are probably just prolonging the inevitability of death at great cost to society and to the patient. However, this was a happy customer. I was not on duty when eleven-year-old Andrew was resuscitated, but I heard the story. Andrew was admitted to the paediatric ward with vague but persistent symptoms of feeling unwell, weight loss, fever and muscle pain. The general practitioner who s p e c ta c u l a r s u c c e s s e s

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referred him had measured his blood pressure, sometimes overlooked, because children rarely have raised pressures. Unexplained hypertension or high blood pressure was added to the list of the boy’s problems. Doctors reading this will, no doubt, be putting it together, like detectives thinking about the clues. The mystery is often easily solved in retrospect but it is sometimes difficult to see as it unfolds in real time. The intensivist first heard of him after an urgent call to the paediatric ward where Andrew had either coughed up (haemoptysis, meaning the severe blood loss was from the lungs) or vomited up (haematemesis, meaning the source was from the gut) blood. Whatever it was, the room looked as if an axe murderer had been there. Almost his entire blood volume was sprayed over the bed, walls and floor. The team could not feel a pulse and he was the colour of the small part of the sheet without blood on it. He may have been dead. The intensivist, who luckily was part of the team, immediately secured a large intravenous line in the upper part of his chest and poured in clear fluid, which did not improve his colour, but restored his pulse. Meanwhile urgent un-cross-matched blood was secured from the blood bank by a runner from the scene. Andrew’s colour gradually improved and his blood pressure was, at last, measurable. Medicine usually operates in a logical order – take a history, perform a physical examination, consider differential diagnoses, do a few tests, and establish the correct diagnosis. It is rarely as clean as this but, in the case of an emergency, all the steps have to be performed in parallel and in a different order of priorities. Firstly, ABC: the Airway has to be secured, Breathing restored 202

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and then the Circulation resuscitated. The aim is to provide oxygenated blood to the tissues – the very stuff of life. The history, diagnosis, tests and definitive treatment are superfluous if the patient is nearly dead. So, at the same time, the circumstances around the blood loss in this patient were being sought. He appeared to be gagging and vomiting before the massive blood loss occurred and so it was thought he may have had a so-called Mallor-Weiss tear of his lower oesophagus or gullet as a result of the extreme retching. This was unlikely, as the retching was not prolonged and was followed very soon after by the blood loss. A chest x-ray, performed soon after the boy was resuscitated, showed that all the lines and tubes were in the correct position, but suddenly the diagnosis became clear. The tube from the nose into the stomach, the nasogastric tube, was deviated significantly to the right. Something was pushing the oesophagus across from the midline. Things started to click; the history of hyper-

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tension was probably due to a coarctation of the aorta, a defect or narrowing, present in this large vessel from birth. Not many things cause high blood pressure in children and this was one of the things that would have been excluded by routine investigations over the next few days. The fever and general unwellness indicated an infection of this defect, resulting in gradual erosion of the vessel and adjoining oesophagus. The contents of the aorta were being pumped into the oesophagus, causing vomiting and spraying of almost his entire blood volume all over the room – rare and spectacular. The action taken by the staff was swift and life saving – the stuff of legends. The junior medical staff helping would no doubt have been secretly thinking what would have happened to the patient if such a skilled and senior intensivist was not in attendance. Others might have marvelled at the bold steps and the quietly delivered orders that resulted in such a rapid return from the brink of death. The circulation had ceased for a brief period, enabling the blood to clot and plug the hole and then fluid had been pumped to his body in such a timely manner as to restore blood flow before damage to tissues occurred. There had been the smallest window of opportunity. The young doctors present were privileged to witness such perfect resuscitation, diagnosis and treatment. Within two hours, the boy was packaged up in good shape and shipped by helicopter to the nearest specialist paediatric hospital, where he had definitive and curative surgery in a long and complex operation that night. Joshua’s is another story of success. Joshua had suffered severe trauma as a result of a road traffic accident. He had just finished 204

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his last high school examination. He had been celebrating, and smashed his car into a tree on the way home. He had no head injury – always a good sign. You can perform miracles in injuries below the neck, the body assisting with its own repair process. However, once the brain or spinal cord is damaged, the damage is permanent.

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Joshua spent the first forty-eight hours in and out of the operating theatre, having his smashed chest, abdomen and lower limbs repaired. During this period, he was transferred back to the ICU, where serious bleeding was still occurring. He was returned to the operating suite several times. Many of the intensivists, anaesthetists and even some of the surgeons thought it was hopeless and wanted to give up. The specialist surgeon in charge of his care was adamant that we continue. He had given over 220 bottles (or about 100 litres) of blood in the first fortyeight hours (there are only about 5 litres in an adult body). It is s p e c ta c u l a r s u c c e s s e s

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hard to know what the world record for blood replacement in such a short period is, but this must be in medal contention. Joshua’s pelvis was in pieces, requiring multiple interventions to stem the blood loss. He needed a hindquarter amputation, which means the bottom on one side, as well as the leg, is removed. He needed ventilatory support on a machine for nine months. A large quantity of his intestines was removed, leaving a bare minimum to survive on. His bladder was also removed and his urine now comes out at the stump where the amputation was performed. His mother stayed with him day and night, tortured by her son’s pain and despair. She never gave up, and would not go home until he was recovering – almost a year later. As an addendum, he was successfully weaned off the ventilator and can now easily manoeuvre around in his wheelchair. The surgeon often presents him at meetings. He asks the audience at various points in the story whether they would now give up. By the time the story reaches the forty-eight hour mark, he again asks the audience who would continue treatment. There may be one or two hands raised, but usually they sympathise with his efforts and accept the inevitable. Many would have given up by six hours and most by twenty-four hours. He then opens the lecture room door and Joshua wheels himself into the room, smiling and waving to the crowd.

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20 | Fatima and John: the difficulty in dying

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ife had not been kind to Fatima, the twenty-nine-year-old woman waiting for me in Bed 1 in the ICU at the beginning of my week on clinical duty. She had systemic lupus erythematosus, a condition that left her skin with an extensively scalded appearance. Her finger joints were gnarled and twisted, and her general appearance wasted. Unlike most seriously ill patients in intensive care, she was conscious, not on any machines and in obvious and crippling pain. Lupus develops when your immune system runs riot, attacking your own tissues. The word ‘lupus’ comes from the Latin word for wolf, and in this disease it relates to the rapidity with which the disease eats away at the affected skin. Erythematosus refers to the redness of the skin, particularly the rash that 207

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typically disfigures the faces of sufferers, forming a butterfly pattern, with the patient’s nose being the butterfly’s body and the cheeks its wings. Fatima had been suffering from lupus for more than ten years. The disease process not only affected her skin, but also her joints, kidneys, and the connective tissues that hold other tissues together. She had been admitted to the ICU as a result of a rare complication of the disease, in which her bowel wall had become extensively involved, leaving it moth-eaten, causing it to rupture in several places. The bowel contents had spilled into her abdominal cavity, requiring an operation in which a large amount of her bowel was removed. Surgeons had brought the remaining two ends of the bowel out to the surface of her abdomen and sewn both stumps onto the skin. They then fitted small plastic bags over each stump, preventing the bowel contents from spilling out over the skin. The trouble was that despite the surgeons’ best efforts, putrid bowel contents had already leaked out through the holes in her bowel into the abdominal cavity. This disastrous situation was compounded because the drugs used to suppress her out-of-control immune system also suppress the body’s ability to fight infection. Her abdominal infection was overwhelming her body’s defences. She needed powerful drugs to support her circulation, and many other organs were failing as a result of this process. When I came to Fatima’s bedside, her eyes were wide with fear and apprehension. She was being given the maximum possible concentrations of oxygen delivered via a tight fitting mask, connected to a machine delivering positive pressure with each 208

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breath. These assisted breaths were designed to keep at bay the fluid that threatened to overwhelm her lungs. It was obvious to me that to keep her breathing, we would very soon need to insert a plastic tube into her windpipe or trachea and connect her to a respirator. The nurse who was caring for Fatima made it clear to both me and my colleagues that morning that Fatima was adamant about not wanting to be put on a respirator. Fatima knew this meant that at some time during the day, she would die. She was a doctor, trained in Egypt, but unable to achieve reciprocal medical recognition in Australia. Her husband had been denied a visa to enter Australia and was working in Iraq. One sister worked in the United Kingdom and the rest of the family lived in Germany. It was a situation we often saw in the area our hospital served. Fragmented families and shattered hopes. On learning of her illness, the sister from the United Kingdom and brother from Germany had rushed to be with her, arriving two days previously. Just as we began discussing our next moves, the consultant who had been caring for Fatima on an outpatient basis arrived. She was obviously concerned about her patient and immediately began discussing plans for further active management, including higher doses of immunosuppressive drugs in order to limit complications of the disease process in the bowel wall. The increased dose would obviously have compromised Fatima’s ability to fight the life-threatening infection that she also had. She was trapped between the devil and the dark blue sea. I listened to the consultant’s well-meaning views, but explained my concerns about forcing a patient to undergo an escalation fat i m a a n d j o h n : t h e d i f f i c u lt y i n d y i n g

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of treatment against her will. I suggested that I talk to Fatima about her own wishes and get back to her. The tight-fitting mask forcing high flows of oxygen into Fatima’s lungs made it impossible for her to speak. But supplying the oxygen in any other way resulted in rapid deoxygenation, slowing of the heart and loss of consciousness. I sat beside her, held her hand in mine, and explained that I needed to talk to her about her disease and what our options were. I tried to frame the conversation so she could respond by either shaking or nodding her head. It soon became clear that, even before her admission to hospital, her life had been one of suffering, as a result of constant pain, immobility and loneliness. She understood the seriousness of the recent complications and was adamant that she did not want any further treatment and understood this would result in her death. When questioned about all the things that she may be suffering from, she said the shortness of breath was the worst. I promised her that we would decrease her suffering with morphine in a dose that would achieve a balance between maintaining awareness and not suffering. She became anxious when I explained that I would now speak to her brother and sister who were in the waiting room. She was also ambivalent about them being present when she was dying. They were both devastated by grief and exhaustion after being continuously by her bedside for over two days. But they were accepting of her decision. There followed a difficult discussion with her consultant who explained how Fatima and she had worked together in controlling the disease; how she believed that if only Fatima could be 210

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pulled through this crisis, her outlook would be good; that she was only young with a lifetime ahead of her. It was easier for me, as I had not known her before this admission to the intensive care unit and could be more objective about the hopelessness of the current situation. I was anxious about trying to explain to my colleague what the patient’s own wishes were, as these could be countered by accusing Fatima of simply being depressed and irrational. Neither the nurse caring for Fatima, nor myself, interpreted her anxiety and fear as depression. Her decision was courageous and appropriate to the reality of the situation. We were ready to work with her in her last few hours of life when friends of her husband arrived with news that he wanted her to fight for her life while he arranged a visa. In my heart, I believed Fatima’s physical and emotional exhaustion were probably more important than pressure from her husband. Nevertheless, she changed her mind about not escalating treatment. Fatima’s situation illustrates the kinds of dilemmas that confront ICU doctors every day. How far should we go in prolonging the life of a patient? Are we mindlessly squeezing in a few more cruel hours or days at the natural end of life? How certain are we that the patient is dying? And who has the right to make the decision to terminate active treatment and begin a different and perhaps more appropriate course of end-of-life care? The patient or her family? Clinicians, lawyers, governments, ethicists committees? Nobody is sure. The law is not clear. Society is confused, torn between the infinite promise of medicine and the reality of death. No clinician wants to be the test case – the legal precedent, spending years in a courtroom and perhaps ending up in prison. fat i m a a n d j o h n : t h e d i f f i c u lt y i n d y i n g

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We acquiesced, sedated her heavily and connected her to a respirator. She looked much more peaceful. The relatives who congregated around her bed were less anxious and her consultant hung onto a small hope. By the next morning, we had even worse news from the pathology lab, showing more extensive involvement of the bowel than had been originally thought. The immunosuppressive drugs would have to be increased further, making the likelihood that her body could fight the infection from the putrid abdominal fluid even less likely; death was even more imminent.

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In some ways, the easier option would have been to continue artificially flogging her heart and lungs until her body began decaying, with death eventually supervening. I decided to cease treatment. The patient’s consultant agreed this was the right course. My strategy was to inform the relatives that she was deteriorating, despite maximum therapy. I explained that the pathology 212

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was even worse than what we thought, and that death was imminent. They were initially angry, demanding that we explore every option before giving up. I explained that that was what I believed we had done. Then came the difficulty of trying to counter their request to just leave her on the ventilator until her heart stopped. I tried to explain that we only use the ventilator as a temporary measure until we are sure there is nothing else to be done. This logic is difficult to convincingly explain as there is the obvious connection between stopping life support and immediate death. I then discussed the next steps with the attending nursing and medical staff. We would ask the relatives to come in and sit with her. I turned the monitors off, so they could concentrate on her, not the machines, turned up the morphine infusion to ensure she was not suffering and asked the nurse to gradually turn down the oxygen levels. I specifically asked the nurse not to explain to the relatives every time the oxygen was turned down. Not because I was afraid of accusations of euthanasia but because they needed to be with her at this time, not to be concentrating on the mechanics of the dying process. Her dying had to be a sacred, not a technological, moment. I was satisfied that she would die over the next few hours or days, no matter what we did, and that artificially prolonging that process was perverse. The real act of cruelty and immorality was that her only wish was to see her husband, and he was not allowed to enter Australia, even while his wife was dying. She died peacefully over the next few hours. The relatives were allowed to concentrate on the tragedy of her death. I felt relief on their behalf when, at the end, they were finally wailing and holding each other. The following day, John, a ninety-one-year-old man, was fat i m a a n d j o h n : t h e d i f f i c u lt y i n d y i n g

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admitted after attempting to stab himself to death with a large knife. Suffering from severe dementia and depression and being cared for in a nursing home, it was his second suicide attempt in two weeks. We were informed by the surgical admitting team of the possibility of his coming to intensive care after he had spent thirty-six of the previous forty-eight hours having surgery to stem the bleeding from his neck and to repair the extensive damage to his chest, neck and groin. He was still bleeding profusely from his neck from sites which were inaccessible to surgery but which may have been able to be repaired using invasive radiology procedures. Invasive radiology has revolutionised many of the interventions we now perform. Radiologists no longer just read x-rays. They insert fine catheters into arteries and veins and track their course around the body. In John’s case, they guided the catheter into the neck vessels, injected some dye, found the bleeding point and inserted material to block that vessel and arrest the bleeding. The procedure had included the insertion of two tiny mesh scaffolds, called stents, each worth $55 000, into the major neck arteries that could not be repaired surgically. The surgeons told me they planned to put another stent in, as John was still bleeding. In an increasingly tense conversation, I pleaded for re-evaluation of such a complex procedure in a ninety-one-year-old desperate enough to try to end his life with a knife. Their argument? ‘We have invested all this time, effort and technology already; and we only have to control one more bleeding site.’ They also pointed out that he was demented and therefore not able to make rational decisions himself. 214

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I was not alone in thinking this course of treatment was inappropriate. Many of my radiology and anaesthetic colleagues, and those destined to care for him when he returned to the ICU after the procedure, expressed their disbelief that we would go to such lengths to prolong John’s life. His son and daughter were also forthright in saying this was not what he would have wanted. Somewhere in his demented state, they believed that he was also extremely depressed and wanted to die, and had been in this state for over a year.

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In the end, however, none of this made a difference. In the current legal climate, I would be powerless to take a stand in direct opposition to a colleague who wanted to act to save a life, while I was advocating risking, or even worse, ending it. It is difficult to judge what the collective opinion of society would be around this issue; it is probably as diverse as the opinions among the clinicians with whom I was discussing the options. In any case, society would be represented by organisations in the areas fat i m a a n d j o h n : t h e d i f f i c u lt y i n d y i n g

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of the law and the media, and I didn’t want to risk my career on their capriciousness. I observed John over the next forty-eight hours, while he recovered from the marathon surgical effort; manacled to his bed so he couldn’t carry out his continuing threats of suicide. It is difficult to pluck patients off the conveyer belt in medicine. Perspective is often lost and patients mindlessly passed from one investigation or procedure to the next, not because it is indicated, but because it is possible. Working in the fragmented environment of hospital medicine, I often find myself at the end of this conveyer belt, waiting for next demented ninety-year-old who may simply want to die. Having said this, John survived to leave hospital. Maybe all the effort was justified. There are few clear answers in this area. I didn’t follow up John’s course on leaving hospital. Perhaps he had regrets about wanting to end his life and was grateful that he was able to return to the nursing home. Working in one part of the health system, we often don’t see the bigger picture. For the same reasons of uncertainty, and against my better judgment, later in the same week I tacitly agreed to accept a fifty-oneyear-old man with terminal liver failure as a result of the viral diseases hepatitis B and C. He had none of the potentially reversible components, such as bleeding or infection, which we could have possibly worked with. It was a simple, straightforward case of the last few days of life in a disease process that would end in death. He was peacefully unconscious; totally unconscious and not responding to any stimulus. Again, my colleagues brought pressure to bear. This time, 216

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they raised the fact that he was only fifty-one years old and reasonably well until two weeks ago. Their inference was that dying at fifty-one was abnormal: possibly sadder than at seventy-five, but not uncommon. Similarly, there are many people who are reasonably well until two weeks before death. I was tired. After several nights on call I was not up to protracted discussions about the rights and wrongs of admission to the ICU when there was little hope of recovery. I put him on a life-support machine, started drugs to support his circulation and arranged for him to be taken by helicopter to a specialist unit for treating liver disease, where he died two days later.

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21 | The worst injury of all

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t is not unusual to have four or more patients in the intensive care unit with head injuries, and several more who have been, or still are, unconscious for reasons that we don’t fully understand. At one stage, three of the four head injured patients in the ICU had suffered blunt or penetrating interpersonal trauma injuries to the head, and one was the a result of road traffic injury. A direct blow to the skull causes a different sort of brain damage to the damage caused by sudden deceleration as a result of a car being involved in a collision. The direct blow causes mainly local damage and swelling, often compounded by a fractured and indented skull; whereas a car collision usually causes more generalised and serious damage. This sometimes involves widespread snapping of nerve fibres as one part

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of the brain moves forwards as a result of the sudden stop, only to rebound with equal force backwards within the skull. Once a neurone in the brain snaps and pulls apart, it never recovers. Thus, much of the damage sustained at the time of the so-called ‘acceleration-deceleration’ injury can be permanent. Having said that, you are never quite sure what the outcome from a head injury will be, unless it is either mild or extremely severe. Often, only time will tell, and improvement can continue to occur over many years. The man in Bed 3 had been so severely beaten about the skull with a steering lock bar that his brain suffered both extensive local damage and generalised swelling. A large piece of his skull had to be removed to decrease the pressure inside his brain. His brain had literally poured out of the large hole that had been made and had to be contained with head dressings. He was to die five days later. The patient in Bed 6 had also been beaten about the head with a steel bar. He had a Glasgow Coma Scale score of 13 out of 15 and was talking on admission to hospital. This would usually indicate a good chance of recovery. Unfortunately at surgery, his brain also oozed out extensively, as a result of excessive swelling and pressure. However, it is difficult to predict functional damage on the basis of how much brain has been destroyed: cats, for example, can have much of their cerebral hemispheres removed and still appear to function relatively normally. He made an excellent recovery after nine days of being on a ventilator and having his intracranial pressure continuously monitored. The third patient was a young woman whose partner allegedly thrust a television aerial through one side of her skull, the worst injury of all

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penetrating her brain before emerging out the other side. The police, quite understandably, did not accept the partner’s story that, because the television reception was poor, she, in a fit of temper, threw it against the wall and the aerial bounced back, impaling her skull and brain. Amazingly, she also made a total recovery.

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Our knowledge of the brain and its function in the early part of the twenty-first century roughly equates with medical knowledge of the circulation before William Harvey. Harvey deter220

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mined that the heart pumped blood in a circular manner around the body; that the arteries carried the blood to peripheral tissues and veins transported the blood back to the heart. A radical proposition at the time. We understand that the brain sits within a rigid bony structure inside the skull; that it is roughly divided into very basic functions and more complex functions, such as thinking. The base of the brain, where it joins the spinal cord, contains the essential functions, such as controlling the heart rate and breathing. This is the brain stem. The higher, thinking functions are situated in the cerebral cortex, which in humans occupies most of the brain. Most animals have the same brain stem functions. The evolution of relatively large cerebral cortices in humans gave us our competitive edge. Within these complex structures are stored memory and emotions, as well as the ability to reason. The cerebral cortex can override the brain stem to a certain extent. We can hold our breath for long periods but eventually the brain stem kicks in to ensure we continue breathing. It is impossible to commit suicide by holding your breath. Similarly, anxiety from the cerebral cortices can make your heart beat faster but you cannot will your heart to stop. The brain stem ensures that you never stop breathing and keeps your heart beating while you are asleep. The cerebral cortex, on the other hand, shuts down into dream mode. Like the rest of our body, there are differences between individuals. These differences in the cerebral cortex were responsible for the creativity of Goethe and Beethoven and the cruelty of Hitler. While we can postulate many environmental and psychological reasons for these the worst injury of all

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differences, we have little understanding of their chemical and structural basis. Things below the neck are much easer to understand and they therefore lend themselves more to medical interventions. We know a lot about the heart, lungs and abdominal contents. We know how muscles are activated by nerves and we know how bones repair themselves. We can remove organs such as the tonsils, spleen and much of the intestines with predictable and minor effects on body function. We can even replace many organs such as the pancreas, liver, heart and lungs. The brain is one of the more complex structures in the universe. The human brain has over fifty billion brain cells (or neurones) and almost 100 trillion connections (or synapses) between those neurones. And yet our knowledge of the brain is relatively crude and limited to observing, for example, that certain areas of the brain are associated with movement and speech, and others with sensation. We estimate global cortical function by the Glasgow Coma Scale (GCS), which is based on three basic functions – eye opening, motor movement and voice. If you don’t open your eyes or move or speak in response to any stimulus from the outside world, you score the minimum three points, one for each of the functions. If you respond normally and appropriately by limb movement, voice and eye opening, you score the maximum fifteen points. The gradations in between vary according to these responses. For example, you score less for not opening your eyes to painful stimuli, moving your limbs inappropriately on command or pain, and making incomprehensible sounds. We have been using the scale for over thirty years and we are still not much closer to estimat222

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ing the function of the higher centres of the brain in the ICU. Technology offers little more and in some cases less than the GCS with regard to tracking disease processes within the brain and estimating prognosis. One of the few things we can measure is the pressure inside the skull, known as the intracranial pressure (or ICP). It can be displayed on the patient’s monitor, along with other information such as blood pressure, ECG and pulse rate. One of the design advantages of the brain is paradoxically also a major disadvantage in the case of brain injury. The thick bony skull normally protects the very delicate and almost liquid brain tissue, but in the case of injury with resultant swelling, the brain cannot be safely accommodated, nor expand outside its protective cavity. The swelling itself compresses the blood vessels supplying the brain tissue, which in turn causes further brain injury as a result of inadequate blood supply and oxygen delivery to the cells. Continuous measurement of the ICP enables us to estimate the degree of swelling. It’s a rough estimate of the pressure which the whole brain is subject to; but even when the ICP is high, there are only limited strategies to reduce the swelling. Similarly, CT (computerised tomography) scans and MRI (magnetic resonance imaging) give us wonderful images of the extent of brain injury but little in the way of assistance in assessing brain function. However, MRI and CT images do give us detailed images of pathology such as haemorrhages or brain tumours, which may be amenable to surgical removal once correctly identified and localised. I intuitively understood the limits of our knowledge about the brain and the role of brain surgeons when I was about fourthe worst injury of all

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teen years old. At that time, there was a popular hospital television program called Ben Casey. Ben was handsome, sullen, clever, unavailable to women, and prone to upsetting colleagues as a result of his belligerent self-confidence. His mentor was an older, wiser man who was forever excusing Ben’s offensive behaviour. Despite the array of fancy tests and machines that helped Ben and his mentor diagnose whatever that week’s condition was, I knew, even then, that it was usually either a brain tumour or bleeding. My younger brothers and sisters would hold me in similar awe to Ben Casey, when, each week, after all the tests and the underlying human drama unfolded, I would thoughtfully announce that the patient had a brain tumour. Usually I was right, but I soon began to add – ‘but there’s a small chance it may be a haemorrhage’, in which case I was always right! The surgery was equally simple – cut it out if it was a tumour or clip the vessel if it was bleeding. Nevertheless, the surgery lasted for a least a quarter of the program. The operation was always portrayed with rapid edits between instruments, anxious glances and sweaty brows being mopped by nurses. I always allow myself an ironical smile when the lay public speak of ‘being a brain surgeon’ as the height of academic excellence. I wonder if ‘rocket science’ can be similarly demystified. One of the few other tools we have for understanding what is happening in the brain is the EEG (electroencephalogram). It looks extremely impressive, with over twenty leads attached all over the skull. These are connected to a machine which records brain waves, or the summation of the electrical activity occurring in the brain. Volumes have been written about EEGs, and 224

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the metres of paper with complex patters traced out look impressive. However, their value in acute medicine is limited. They can tell us if a patient is having a seizure, but usually that’s obvious anyway; and they can broadly tell us that the patient is in a coma, but not much more accurately than by using the Glasgow Coma Scale. ‘Will the patient recover and, if so, will they be a vegetable’ is the most pressing question relatives and friends of patients ask. I usually begin my explanation by saying that if the injury was below the neck, I could give some roughly accurate information about outcome. ‘However’, I go on, ‘the brain is the last great frontier, we know little about either its function or the outcome as a result of injury to it’. I reassure them that I am not evading their question, nor do I underestimate the importance of the implications of the answer; it’s simply that I have little idea in the early days following the injury what improvement may continue. the worst injury of all

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I then explain that, in spite of our equipment and complex diagnostic tests, the best evaluation of brain function will eventually be made by them. They will be able to ascertain the more subtle aspects of personality change and finer points of memory loss better than the doctors. I also warn them that, while the health system may classify the patient a success if they talk, and walk out of the hospital unassisted, the patient’s personality may be radically changed forever. They may need years of rehabilitation and may be dependent on carers, as well as being unemployable for the rest of their lives. I explain from day one about this uncertainty and how their lives will almost certainly never be the same from this moment on, and that they need to prepare themselves for a marathon, and not a 100-metre dash with a week of twentyfour-hour vigils at the bedside. I also explain that even with the best treatment, the patient’s personality may change, even if it may only be to a minor degree. Having said that, one of the most intelligent and creative people I have ever had the pleasure to call a friend suffered a severe head injury as a result of road traffic trauma and has made an almost total recovery and has remarkable insight into the way that recovery has occurred. Nevertheless, with each case of head injury I treat, I think to myself this is one of the most unpredictable and devastating injuries that people can suffer and the one I would least like, myself.

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22 | Patient-centred care

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’m not too sure whether Princess Diana would have lived even if she had received emergency medical treatment in the first few minutes after her accident. However, I often wonder if, had she been the subject of an integrated and coordinated system to manage serious trauma, her outcome may have been different. Medicine is built more around the reputations of great individual clinicians than around great systems. Acute hospitals are changing radically. Systems now being implemented are built around the patients’ needs, rather than simply reinforcing centuries-old silos (or rigidly compartmentalised departments or areas of common interest) within which health services are delivered. Trauma services have led the way in deconstructing all the existing silos and then reconstructing them in a more effective way. 227

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Peter, a twenty-four-year-old man in our ICU had broken limbs, a severe lung injury and a fractured pelvis. His bleeding spleen was removed soon after his arrival in the emergency department. Just twenty years ago, he probably would have died at some point before reaching the ICU. He would have been picked up by an ambulance crewed by staff who were not trained in advanced resuscitation; driven to a local hospital, where he would have been attended by an unsupervised junior doctor, also with no formal training in managing seriously ill trauma patients. The junior doctor would have had to spend perhaps an hour on the phone arranging for a transfer to a larger hospital. During that time, there would have been little medical attention. The junior doctor would have been subject to patronising comments from staff in the referral hospital, suggesting it was her or his problem not theirs. One might question why they are called referral hospitals when they don’t see accepting patients as a major part of their role. Staff from the larger hospital would then offer to get back to the junior doctor if they found a bed in their own hospital, but unfortunately, for the time being, they would probably have told the doctor they had none. Eventually, an ambulance would have taken Peter, if he were still alive, to a larger hospital where there were the resources necessary to treat serious trauma. Treatment would have continued at the larger hospital, overseen by another junior doctor, also with no formal training in serious trauma. This doctor would have then called on other specialists, such as orthopaedic surgeons, general surgeons and intensivists, who would eventually tend to their bits in a protracted and uncoordinated way. If Peter did eventually make it to 228

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intensive care, he almost certainly would have had severely damaged organs as a result of delayed and inappropriate treatment. In many parts of the world, even in rich cities with famous physicians and big hospitals, this still occurs. The components of the system are all there – equipment, skills, knowledge, experience – but they are not connected. I have no idea what sort of trauma system existed in Paris at the time of Princess Diana’s accident but even if the world’s best surgeon was waiting in the operating room for her, unless every part of the system, right from the time of the accident, was functioning in a synchronised way, the skills of the surgeon would have been to no avail. pat i e n t- c e n t r e d c a r e

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The night before he arrived in our unit, Peter had been a passenger in a high speed, head-on collision with a tree. The driver was killed instantly. Paramedics trained in most aspects of resuscitation arrived within minutes and worked to wellrehearsed and proven protocols. Then the first of several triage decisions was made. Peter fitted into the most seriously injured category and needed immediate transfer to the nearest trauma centre, bypassing closer but smaller local hospitals. Triage categories are based on the severity and extent of injury, as well as the nature of the accident. Contact was immediately made with the trauma centre and the trauma team was put on alert. The trauma team is also called according to triage categories. There is an ‘over triage rate’ of about 40 per cent built into the system. In other words, the trauma team is called to 40 per cent of patients who probably don’t need such high-level skills on the basis that it’s better to be called to some people who may not need it than to miss one who would die otherwise. The trauma team, like the paramedics, act according to strict protocols and priorities. The concept of the standardised approach was developed by an American surgeon, James Styner. Styner had been injured in the crash of a light plane he was piloting. His wife and four children had been passengers. His wife died as a result of severe injuries and his children were also severely injured. He was subject to the old system – disjointed, with the wrong people delivering care at the wrong time. When he recovered, he made it his life’s mission to develop a system based on teamwork, and prioritised care according to tried and 230

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tested protocols. This is hard for doctors. They are trained to be individuals, not team players, and protocols are sometimes seen as mindless constraints, necessary for lesser beings such as paramedics and nurses; people who are not trained to think, analyse and lead. It is more difficult to introduce a new system in medicine than to prescribe a new drug or perform a new operation. There is the hint of egalitarianism in the concept of the trauma team, rather than the hierarchical structure that has built up over centuries. The problem with the old system was that it did not respond rapidly enough, nor did it provide the right people with the right levels of expertise at the right time. The idea of calling a trauma team, which involves the simultaneous and immediate attendance of staff with the appropriate skills, knowledge and experience necessary to handle trauma resuscitation, was initially an anathema to team members in one of the hospitals I worked in. There were complaints, refusals to attend and resentment that the usual hierarchies were being bypassed. This was teamwork and they didn’t like it. There were subtle and overt attempts to sabotage the new system. This culminated in a trauma call to one of the ‘over triage’ category of patients which nearly destroyed the credibility of the system irretrievably. One of the calling criteria for the trauma team was ‘fell off a horse’, as the resulting injuries can be life threatening. In this case, however, a young woman fell off a stationary Shetland pony at a school fair. Despite only grazing her leg, she was subjected to the full force of the system. Even the best systems can be undermined by concerted campaigns which aim to trivialise and ridicule. Senior medical specialists, pat i e n t- c e n t r e d c a r e

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who believed the increasing evidence that a well run trauma system saved lives, salvaged it by personally being part of the trauma team. The junior doctors were caught in a dilemma. Firstly, they didn’t like working to protocols but secondly, they rarely questioned their senior mentors, who had now become part of the trauma system. And so it was that Peter was sitting up in his bed, his condition stable, acknowledging the morning ward round as it stood around discussing him. Like Galileo, the trauma system was gaining its authority, not from the scriptures but by the ‘experience of our senses and from necessary demonstrations’. However, Galileo was condemned to indefinite imprisonment and torture unless he recanted his ideas. Similarly, we were about to challenge the existing orthodoxy by attempting to introduce another systembased concept – the medical emergency team (or MET). Most hospitals in the western world have a cardiac arrest team. You see them on almost every television medical program. In response to a sudden cardiac arrest, an alarmed and disempowered nurse (invariably an attractive young woman) presses a button, which alerts a team of doctors (usually young attractive males) who then hurtle around corridors and huddle around the patient in a flurry of activity. Close-ups of concentrated, anxious looks on doctors’ faces, concerned and supportive looks on nurses’ faces, and obviously expressionless looks on the dead patients. In these shows, approximately 70 per cent of those patients who are portrayed as having a cardiac arrest survive. In real life, only about 15 per cent live to leave the hospital, and of those, most will die within twelve months. 232

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Cardiac arrests in hospitals are usually not sudden. They are preceded by hours of slow and very predictable deterioration. Vital signs – the figures charted by nurses at the ends of patients’ beds – usually show serious deterioration long before the arrest. The pulse rate increases or decreases, the respiratory rate increases or decreases, the blood pressure drops, or there is a significant event such as a seizure. The same often occurs before serious complications requiring admission to the ICU. In fact, much of our work in the ICU is provided by the failure of staff in the general wards of our hospitals to detect serious illness early. Even if these at-risk patients were detected early, the staff covering the general wards usually haven’t the skills or experience to treat them. In order to address this problem, we began to work outside the walls of the ICU. Firstly, we needed to establish what levels of vital sign were dangerous. Then we needed a system that responded to those serious vital sign abnormalities, rather

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than waiting until the patient died. This was achieved by changing the name of our cardiac arrest team to a medical emergency team. The function of the MET was changed to preventing cardiac arrest, death and other serious complications. It made sense and it worked. The problem was not that it wasn’t sensible to intervene early, when patients first started deteriorating, but how to implement such a system within a culture that was not used to interacting across professional and geographical boundaries. Hospitals work in silos, based on individuals, working more or less independently. The usual way of managing a sick patient in larger hospitals is for the nurse to inform the intern, who informs the next up the chain, who then informs the registrar or their equivalent, who then informs the specialist in charge of the patient. In smaller hospitals and some private hospitals, the nurse has to refer to whoever is available. This may take several hours, which doesn’t matter in non-urgent cases. In fact, the traditional way of one colleague referring to another has worked well for centuries. The introduction of the cardiac arrest team in most hospital referrals in about 1960 crossed these boundaries. However, the team was only allowed to respond rapidly and without the admitting consultant’s permission when their patient had arrested or died suddenly. Live cases remained the property of the consultant in charge, no matter how ill and close to death they may have been. Hospitals are about tight control and inflexible boundaries. You couldn’t have people running all around the hospital, responding urgently to patients’ needs; there would be chaos. 234

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The gradual spread of the MET concept is in itself a study of the dynamics and culture of the health system. The system has now been adapted and adopted in many countries around the world but not without encountering cultural challenges. Admitting specialists are afraid of losing control. They would argue that their junior staff would not learn if they were not exposed

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to caring for sick patients. Unfortunately, these junior doctors receive little training in how to manage the seriously ill in medical school and, apart from the usual CPR training, little formal training after they have graduated and started working. On-thejob training was either non-existent or given by those who also had little formal training. It wouldn’t have helped much if the specialists were present twenty-four hours a day, as they are also usually not trained in the care of the seriously ill and even if they had been formally trained at one time in their career, they had pat i e n t- c e n t r e d c a r e

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by this time specialised in another area and no longer kept up the skills or knowledge. There were many other challenges in implementing a system that crossed traditional boundaries. The MET system was difficult to implement in my own country, for many different reasons. Nursing administrators were reluctant to empower their nursing staff to not only record abnormalities in vital signs but to act on them. This has something to do with the hierarchical, almost paramilitary control embedded in the culture of nursing. Bedside nurses always nod knowingly when I say that the biggest obstacle to local MET implementation was their own local nursing administrators. It was as if the senior nurse administrators who had served their time doing shift work and being treated poorly by their own nursing administrators, were now not about to empower their own nursing staff. Even colleagues in intensive care were threatened by the implementation of a hospital-wide system. Many were comfortable working within the four walls of their ICUs. They were all busy and dedicated doctors who were now being asked to take on extra responsibilities and care for the seriously ill by organising a pre-emptive strike team with no extra resources, even if it may prevent eventual admission to their own intensive care unit. The science supporting such a concept becomes irrelevant when ethical constraints would never allow us to randomise patients in a scientific trial into two groups of patients – those who were attended early by a team trained in the care of the seriously ill and those where we watched and waited until they had a cardiac arrest. It is not just a matter of being mean-spirited or parochial; 236

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the very structure of medicine encourages individuality and suspicion within and between health care deliverers. Creating a system built around patients’ needs often confronts the existing culture, which is built around the individual patient/ doctor relationship. The immediate satisfaction of interacting with a patient and their family, especially when a cure has been achieved, is replaced by the more diffuse satisfaction, when a patient’s life has been saved by a team of colleagues, some of whom aren’t even part of your own profession, and most of whom you have not met. All of this may be happening without the consultants’ input or control, possibly at 2 am when they are usually sound asleep. The old system of all patient care being controlled by a single consultant specialist is reaching its use-by-date. Specialisation has been both a blessing and a curse for patient care. Specialities fall into several categories: you can specialise in a particular organ, such as cardiology (the heart); then there are specialists in certain patient age groups such as paediatrics or geriatrics; or you can be a technical specialist such as in radiology, anaesthetics or surgery; or finally you can own a specific part of the hospital in which to practice your speciality such as emergency medicine or intensive care medicine. So, for example, we have neurologists, specialising in the brain and nervous tissue; gastroenterologists, specialising in the gut and liver; and respiratory physicians specialising in diseases of the lungs. Specialities can also sub-specialise. For example, cardiologists can open up blocked coronary arteries under x-ray control; others treat heart failure; or develop particular expertise in imaging the heart using echocardiography. pat i e n t- c e n t r e d c a r e

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This trend has advantages. The more you deal in specific tasks, the better you get at them. However, at the same time, patients being admitted to hospital nowadays rarely have a single diagnosis. They are often older and, as such, many of their organs are involved in a total disease process, either as a result of ageing or of their lifestyle. Smokers, for example, develop damage to their lungs, heart and arteries supplying other vital organs such as the brain, and less vital areas such as the limbs.

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A patient with a history of smoking can be admitted with heart failure and put under the care of a cardiologist. The problem is that the patient invariably has lung disease and other organ damage as a result of smoking, as well as deterioration simply as a result of the ageing process. The cardiologist is often not comfortable with treating diseases of these other organs. To compound the problem, the sum of the organ damage and how that damage interacts between the respective organs results in 238

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a patient with issues and problems requiring a broad approach. The sum of all the damaged organs represents practical problems for the patient and includes challenges such as decreased mobility and increased risk of falls. To the hospital cardiologist specialising in coronary artery stenting, these distracting issues are somebody else’s territory. The problem is, there often isn’t anybody else. The days of the general physician who could manage the whole patient have largely gone in many countries. Compared to thirty years ago, when specialisation was all the rage, it is now uncommon for doctors to have a patient with a single organ problem. The vast majority of hospital patients now do not have a single and specific diagnostic label. At the same time, the general physician is a dying race, if not already dead, in many hospitals. The prestige associated with being a specialist physician means that they have become precious about their own area of expertise, often resulting in less than ideal total patient care. Hence the new specialty of geriatricians – general physicians specialising in the care of the elderly. In some parts of the world, we are seeing the emergence of another new speciality – the hospitalist or acute care physician. This speciality recognises the complexity of most hospital patients. These doctors accept and manage the hospital course of most admitted patients. They will only seek consultations from single organ disease specialists (so-called SODS) for particularly difficult problems. When the hospitalists move into the hospital, the SODS usually move out and limit their practice to consulting ambulatory patients and performing procedures in specialised rooms. pat i e n t- c e n t r e d c a r e

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The hospitalists are also trained in the care of the more seriously ill patients – the ones that aren’t quite sick enough to be in an ICU but aren’t quite well enough to be cared for adequately by a SODS. The practice of caring for the seriously ill in hospitals is no longer left to the most junior members of the medical staff, as it was when I was an intern. It is not something to be picked up along the way, or learnt by trial and error with little supervision. Training in acute medicine such as intensive care or emergency medicine now is as long and arduous as medical specialist training in other areas of health such as surgery or cardiology. Acute hospitals are struggling with discrete areas of care which often don’t relate to each other. It is the same with other parts of the health system, such as community nursing, home care, non-government agencies and primary health care givers. They often have their own empires, funded and operating without reference to other agencies. The bigger picture is even more depressing. The health of individuals and communities is largely determined by non-health factors such as housing, employment, socio-economic status, justice and education. Each of these well meaning empires has its own jealously guarded funding, ethos and internal structure for recognising personal ambition. The power brokers within these organisations are well paid and clustered around the attractive suburbs, where they reside. The system encourages them to be inward looking and process focused, rather than interactive around community needs. We have barely begun to establish systems oriented to patient and community needs.

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23 | Getting it wrong

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he woman in Bed 2 was about seventy-five years old, pleasant, obese and, despite the plastic tube in her mouth connecting her lungs to the ventilator, looking alert and comfortable. This was unusual for a patient in an ICU. They are usually unconscious as a result of severe trauma or a multi-system illness like septicaemia. A large and very recent abdominal incision hinted at the woman’s problem. I had seen about four other cases like this over the past twenty years – the surgeons had repaired a large abdominal hernia and she was unable to breathe. Over several years, the woman’s abdominal contents had worked their way out through the weakened muscles enclosing the front of the abdomen. The intestines were only covered by skin. She had been living with a large unsightly bulge, about 2 41

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20 cm in diameter. In itself, this doesn’t cause a problem, unless the opening to the hernia narrows, causing the gut in the hernial sac to become strangulated or starved of its blood supply, eventually becoming gangrenous. This is very rare and was not likely to happen to this patient as she had a large opening to the hernial sac and her gut was not threatened in any way. Nevertheless, it was an unattractive sight and she had private medical insurance. During the operation, the surgeons had returned a large amount of bowel back to where it belonged and sewed the abdominal muscle layers tightly together – a perfect job, at least on the surface. The problem was that there was now insufficient room inside the abdominal cavity for that amount of bowel. A much smaller abdominal cavity may have been suitable when she was thinner and twenty years younger, but now her bowel was surrounded by excess fat tissue and her seven metres of bowel did not fit into the new space, meaning she could not breathe without the assistance of a machine.

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The ventilator could provide the force to push the woman’s diaphragm down against the new inhabitants of the abdominal cavity; to compress the bowel, allowing the lungs to expand. However, she didn’t have the strength to do this by herself. She would be ventilator dependent for several weeks – a rare but recognised complication of this operation. Her life was now at risk. We had to support her breathing until either the abdominal muscles stretched to accommodate the original size of the abdominal cavity or the hernia had to be reconstructed, leaving her with the original problem. I was in favour of returning her to the operating rooms for reconstruction of the hernia. In view of the threat to her life, perhaps I should have been more insistent with the surgeons. However, in theory at least, we had the means to keep her alive until the cavity assumed a more accommodating shape. Moreover, there would be the practical challenge of explaining to the patient and her relatives that the wrong operation had been performed and we now needed to subject her to another large operation in order to recreate the problem for which she had the original operation. The medical literature is sparse in this area. The complication is rare and only based on a few anecdotal case reports, rather than a large and properly conducted scientific series, comparing those patients who were left on the ventilator with those who had their hernia repaired. I took the easy way out (for me, not necessarily for the patient) and prepared for the long haul. In my experience, she would be dependent on the ventilator for several weeks and would be predisposed to develop the general complications associated with just being in an ICU. getting it wrong

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Even if you are reasonably fit before your illness and even if, like this woman, you have a relatively simple problem limited to only one organ, there are many serious and life threatening complications that can occur simply because you are in an ICU. Infection is the most common and certainly one of the more serious. The commonest sites are the lungs, bladder and in the blood, all as a result of the invasive artificial tubes we need to insert in order to guarantee functions such as artificial ventilation and artificial feeding. Infection of the lungs (or pneumonia) occurs because machines and plastic tubes bypass the body’s own breathing mechanisms. No matter how sophisticated modern ventilators are, they can never deliver a breath as effectively as the body can, especially around the bases of the lungs, which tend not to be inflated efficiently by ventilators. The plastic tube inserted through the mouth and then through the vocal cords into the windpipe, connecting the ventilator to the lungs, doesn’t help things. While nursing staff regularly clear the lungs of secretions with suctioning devices, this is never as efficient as the patient’s own cough. Most patients in the ICU have a tube in their bladder in order to drain their urine, and this becomes a common site for bacteria to enter the urinary drainage system. Similarly, patients invariably have plastic cannulae in their veins and/or arteries. The cannulation of large or so-called central veins such as in the groin (femoral vein), neck (jugular vein) or shoulder (subclavian vein) is particularly prone to infection. A vicious cycle often occurs where the central venous line becomes infected; requiring antibiotics, which can only be administered through a central venous line, which in turn is the source of the infection! 244

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This poor woman suffered her first infective complication on day five, when she developed serious septicaemia, or blood poisoning, as a result of the central line. First, she became drowsy, almost unrousable, then her blood pressure dropped and her pulse rate increased; she developed a fever and the number of while cells (the cells responsible for killing the bacteria) in her bloodstream increased greatly. Expensive broad-spectrum antibiotics were commenced and the offending central cannula was removed. She gradually improved over the next two days. Another line had to be introduced in order to deliver the antibiotics, and, of course, this too became infected with different and more resistant bacteria five days later, and the same procedures were carried out again. The patient was desperate to go home but the lines and tubes were needed to keep her alive. The major threat to her life was because she was not making any progress; she was unable to be weaned off the ventilator, so we needed to keep all the tubes and lines in place. Because of the tube, she was unable to talk. She would look at me pathetically each morning and I would mumble something along the lines of ‘everything is going very well’. This was ‘doctor talk’ for things weren’t going anywhere but at least she had got over the last medically related complication. After five weeks with no progress. I recommended to the surgeon that we explain to her that it was unlikely we would have her off the ventilator for many weeks and that we should reoperate and recreate the hernia so that she could once again breathe by herself. I had long discussions with her and her relatives about the dilemma. She was desperate to get out of hospital. I explained getting it wrong

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that, in my opinion, it would be many weeks, if ever, before we could liberate her from the breathing machine. It was deliberately biased advice but based on what I believed. She agreed to the operation, even if it meant the return of the hernia. The surgeons agreed, but only because of the slant I had put on the picture. The operation was arranged for five days hence. During that time, she made remarkable progress and, within a week of the decision to operate, was walking, without the need of a ventilator, discharged to a ward and soon to go home. I had got it wrong. In one of my first jobs as a doctor, an orthopaedic surgeon, late one Friday evening, cemented an artificial joint in a patient the wrong way around. The cement was a rapidly drying one and designed to last a lifetime. The surgeon had to drill out the artificial joint, destroying a lot of bone on the way, making it impossible to use a similar prosthesis. He sewed the patient up and I felt for him, not the patient, because he had worked so hard trying to repair the damage, and I was his intern. I was responsible for all of his patients while he wasn’t there, which was most of the week. I felt responsible to him and he was courteous and even flattering at times. It now seems bizarre to me now that I put the fact that the woman would be permanently crippled as a second priority. Sometimes there is a ritual played out at review meetings where cases that went wrong in the previous week are discussed. Sometimes, when there’s nowhere to hide, the specialist will confess. The Greek chorus will listen and chant lines like, ‘But there was nothing else you could have done’; ‘The test didn’t come back in time’; or ‘The patient was going to die anyway’; or ‘It’s a 246

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pity the nurse/junior doctor didn’t tell you earlier’. The chant is probably related to a desire to be treated just as sympathetically when you make your mistake. That’s the point. We all make mistakes. Statistically, you have to. Most doctors probably feel so bad that they need little extra reminding of their error. However, in medicine, there’s usually more at stake than the myriad of small mistakes that others make in the course of their own employment. Governments and health administrators may close a hospital or fail to deliver equitable care, resulting in a certain proportion of the population dying or suffering severe complications as a result. Bankers and business tycoons make mistakes and still receive their bonuses. Lawyers make mistakes and the average person might not even realise it. However, there is not the same immediate cause and effect when a direct health care deliverer makes an error. There has been a change away from a culture of blame, acknowledging that most errors are the result of many parts of the system simultaneously failing. It is rarely any one person’s

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getting it wrong

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fault. There is now a whole industry around analysing errors in medicine and how we can all improve health care delivery and patient outcomes. Nevertheless, the rhetoric of this industry is fragile and blaming individuals is often resorted to as an easy way out. The situation is not helped by having an ideology of organisation-wide responsibility, clashing with the need for the legal profession to sue individuals in order to make a living. I had made the wrong call. In my silent reflection, as I saw her improving each day, I had to face the fact that I gave the wrong advice. I wondered how many wrong calls constituted a bad doctor or where was the line when your colleagues first began to hesitate slightly about your clinical judgment and then to be downright suspicious. I tried to be magnanimous and share the patient’s excitement over her rapid improvement. Like most aspects of medicine, it is rare to have a simple answer to all problems based on sound scientific evidence. Most decision-making is based on a complex interaction of factors; both within the doctor and the patient. I was searching for a way out, a justification for making the wrong call, but I couldn’t rest easily. I would store this case away without any censorship and hopefully use it as a basis for more informed decision making next time.

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24 | Surviving the experience

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he features of torture include isolation, threats combined with occasional rewards and indulgences, the infliction of pain; little or distorted explanations, degradation, and constant artificial lighting and sleep deprivation. The difference between genuine torture and a patient’s experience in the intensive care unit is that the staff there do not deliberately inflict suffering; quite the opposite. They are caring and acting in your interest. Nevertheless, patients in the ICU suffer debilitating symptoms, both in the ICU and afterwards, independent of their illness. Almost all patients who are in the ICU for more than a few days will suffer from hallucinations towards the end of their stay in the unit. The hallucinations almost always involve staff persecuting them in frightening ways. We usually give these patients 249

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a medical label such as confusion or paranoia, instead of reassuring them that it is part of being very ill and the hallucinations will go away when they return to a more normal environment. Behind the technology and life-saving activities associated with ICUs is a personal bleakness that many patients never recover from after they leave hospital. Many times, it begins when they first see themselves in the mirror, often after weeks of being close to death. Most patients who have spent a prolonged time in the ICU lose weight. After discharge from hospital, their muscles are wasted and their clothes hang loosely. Many have a bald patch at the back of their head, where it has been lying on a pillow. There is hair loss and the remaining hair has a lacklustre appearance. Some of the physical changes are predictable, such as the many scars where tubes and drains have been inserted or operations performed. Patients often complain of weakness, joint stiffness, even ‘frozen joints’ and general pain, often for months after being in the ICU. Nerves can be damaged, just by immobility and lying in a bed, adding to the weakness, and sometimes causing a change in skin sensation. Usually these disabilities slowly improve, but in some cases the weakness and pain are permanent. Perhaps even more concerning for patients is the psychological impact as a result of being in an ICU. The effect on their psyche can be debilitating. A part of their life has disappeared. There is almost total lack of recall of their time in the ICU. The memories they do have may be distorted and often result in anxiety, depression, delusions and nightmares. The ability to process information is decreased, memory loss is common, and the attention span is decreased. Up to a third of patients still experience 250

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sexual dysfunction one year after hospital discharge. Many are afraid of venturing outdoors and have difficulty resuming previous employment. There is a high incidence of relationship breakdown and alcohol or drug abuse. A significant number develop post-traumatic stress disorder. Post-traumatic stress disorder (PTSD) is an often used, but difficult to define term. It follows a traumatic event and is accompanied by an exaggeration of the usual suffering and painful feelings that are inevitable after such experiences. These memories usually decrease with time, but people with PTSD have increasingly worse reactions such as flashbacks and nightmares, accompanied by panic attacks and physical symptoms such as sweating and palpitations. Other features include avoidance of stimuli associated with the trauma, hypervigilance and insomnia. Nobody knows exactly how many patients suffer from

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PTSD as a result of being in an ICU. It could be as low as 5 per cent or as high as 60 per cent. As well as being difficult to define, people with PTSD usually internalise their torment and avoid seeking help. Whether or not a former patient has full-blown PTSD, the burden on their family can be overwhelming. Many are now locked into constant care for this physically damaged and emotionally disturbed person, who, even without brain damage, is significantly changed and tormented by nightmares and delusions, the source of which the victim cannot locate. Relatives, whose lives may have been put on hold while they conducted vigils at the bedside, often for weeks or even months, now have to deal with a different challenge – a person different from the pre-illness one, with all kinds of issues that cannot be managed with machines and drugs. The relatives may become resentful about the fact that the person with whom they spent so much time in the ICU cannot acknowledge that they themselves have also suffered, albeit in a different way. The ex-patient often needs continuous attention for reasons which are different from those arising during their hospital stay, and it is the relatives who usually have to provide that care, with little support or understanding, even from doctors – many of whom are not familiar with what happens to patients after being in an ICU. It is not surprising that many relationships fall apart as a result of the ex-patient’s unaddressed torment and feelings of hopelessness, as well as resentment and estrangement by the relatives. We try to explain to relatives that a new struggle with just as many challenges for them will occur after the patient leaves hospital. They usually express confidence and say something 252

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like, ‘All I ask is that they are able to live to be at home again – other issues are minor in comparison’. They often aren’t. The health system supports the infinite needs of intensive care – expensive machines and drugs, and dedicated staff twenty-four hours a day, seven days a week; but the same system does not fund the post-hospital follow-up, relatively minor in terms of cost by comparison and just as important to the patients and their carers. Victims of a heart attack or stroke usually have excellent rehabilitation services arranged after their hospital stay. Intensive care is a geographically confined specialty, caring for patients for a limited time until they improve enough to be discharged to the general wards or die. It has no organ of its own and our skills are limited to serious illness. Nevertheless, there are isolated centres around the world that are beginning to document the problems associated with a post-hospital experience and lobbying on behalf of patients for appropriate follow-up services. For most intensive care specialists, their lives are already stretched, dealing with the demands of the acute illness. Most have neither the time nor the skills to establish post-hospital services. Our research is almost always limited to the many issues that occur within our own units. A health care system based on medical silos rather than a patient-centred system has advantages but it can leave whole populations of patients and their carers abandoned.

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25 | Dying by other names

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ying patients are as helpless as newborn babies, but for different reasons. We have taken away their rights. Henry, for example, had a failing heart. One of the major valves in his heart, the aortic valve, was blocked. The heart was in its terminal stages because the muscle had become exhausted, pumping against a valve which could barely move. Normally, it is a simply matter of replacing the blocked valve with a mechanical one or a new one, fashioned out of a pig’s valve. Henry had come to us too late. Because of the blocked valve, the bare minimum of blood was being pumped out of the ventricle into the body’s major artery – the aorta. The function of all the tissues and organs supplied by blood pumped into the aorta was severely compromised. The blocked valve was also causing 254

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blood to build up in the lungs, causing breathlessness. Henry was not yet aware that his other organs were under pressure. Organs such as the kidneys were failing but as yet this was only being detected by abnormal blood results. This failure would cause an insidious, slow and relatively painless death. However, his lungs were failing badly, flooding with fluid from the back pressure. This caused him immense distress; he was drowning in his own fluid. He was sweating, sitting bolt upright in bed, and had the wide-eyed fear that accompanies anyone who is unable to breathe. I knew the surgeons couldn’t operate. There was no hope. He was clutching the sides of his bed and sitting forward, straining for each breath. Not so long ago, fathers had to huddle in a crowded waiting room while their wives gave birth. Many newspaper cartoons used this scene for innocuous social comment in the 1950s, usually involving congratulatory cigars upon the successful arrival. The husbands then crowded against glass windows while the babies were displayed at specific times and for short periods only. Invariably, there were no mothers in this scene; just a single nurse arranging all the babies while the husbands craned their necks, attempting to see who the baby resembled and whether it had all its fingers and toes. Presumably, the mothers were also isolated, not only from their babies, but from their husbands. The health industry took over the entire birthing ritual without asking anyone and with no evidence that it improved outcomes. The public accepted it, as they do with the current justice system. Paradoxically, in the 1970s, at the same time that birthing was being reclaimed by women and midwives, the health dy i n g by ot h er n a m es

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industry was taking over the dying process. The first of my grandparents to die was my maternal grandfather in 1959. He passed away quietly at home. Most grandfathers did back then. The family doctor came and pronounced him dead, and offered his condolences to the family. My brother and I were scared stiff by the thought of our grandfather being cold and dead in his bedroom behind the closed door, but then again we were no more anxious about this issue than many of the other ‘adult’ issues that we had to gradually come to terms with as children. My next three grandparents died protracted, and at times cruel, deaths in institutions. The health system had medicalised the dying process and society had given up without a struggle. Apart from the obituary columns, little attention is paid 256

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these days to ageing and dying. Every newspaper and television station has its pre-prepared files on the rich and famous, in case they suddenly die and material is required for the news. I wonder at what age these files are assembled and whether the possibility of unexpected and accidental deaths in young celebrities is taken into account. There are few feature articles in the popular press on ageing and death, except to advertise the latest cosmetic surgery and liver cleansing diets as ways of stalling ageing. There are few images of the elderly, even in the social pages. And of these, they inevitably show someone looking desperately uncomfortable with their age. Advertisements for retirement funds portray a handsome couple, with slightly grey hair, reaping the rewards of a dedicated working life; doing the things they always wanted to do and smiling indulgently at grandchildren. They seem to be about fifty, rather than seventy years old. How these people turn into the ones that arrive in the ICU is a mystery. Somewhere along the line, stiffness and decreased mobility, memory loss, chest pain and cancers gradually reduce their bodies to something disdained. They no longer live with their children and so are farmed out to retirement villages or old people’s homes, where infirmity sets in and the messy dying process occurs in secret. It is against this background and after admission to the ICU, that I am approached by relatives of the dying who believe modern medicine can reverse the process. Sometimes it can, but often it simply prolongs dying in shabby ways. This is where the complicity sits. Modern medicine is not sure where its own limits are, but they are inevitably exaggerated in the direction dy i n g by ot h er n a m es

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of cures. Society is also not sure where medicine’s limits are but we go along with its optimistic claims. It seems to be in everyone’s interest to assume that medicine has all the answers. There has been little re-evaluation of the doctor’s role from centuries ago, when they had to be seen to be striving their utmost to save life. Although doctors were impotent in most cases of severe illness, they surrounded themselves with the trappings of self-importance, similar to witch doctors in other societies. Sometimes patients would get better, in which case the doctors probably claimed all the credit. At the same time, I suspect that when things went wrong, it was put down to the inevitability of life’s natural course. A weekly television program on the inevitability of ageing and dying and the limitations of modern medicine might help. The personal dramas of staff members could still be shared, as well as the stories of patients. We could celebrate equally the sacredness of life and of death. We could show how genuine caring and honesty could be provided to people and how doctors needn’t feel guilty or uncomfortable with death and dying. Since the 1950s, there has been an explosion of diagnostic and therapeutic options. It is often difficult to know when and how to judiciously apply them. Patients are passed along a conveyor belt of increasing medical specialisation, complexity and cost until they end up in the intensive care unit, where the concentration of expensive drugs, monitoring and therapeutic interventions is mind-boggling. Friends and relatives are no longer comfortable with their loved ones dying in the home. They have seen enough television to know that when someone is very sick, you ring for the ambulance. They then are admitted to the emergency department. The staff there are trained 258

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to resuscitate and package for admission to the hospital. They do not pluck patients off the conveyor belt when they are dying and nothing further can be done. We now have ways of temporarily prolonging the dying process. Because these involve machines and complex drugs, patients have to be admitted to the ICU for further care. Who is going to draw attention to the perversity of this situation? Politicians and health administrators would be accused of callously saving money by shortening lives, especially when it costs about $3000 a day to keep a person ‘alive’ in the ICU. Taking a patient off a life-support machine is controversial. The party in opposition could accuse the government of murder. Our medical colleagues in other specialties don’t appear to understand which patients we can save and return to the community and where all these interventions are simply futile. All they know is that if they have a sick patient under their care in the hospital, they get transferred to the ICU; some get better, often much to their surprise, and others die. It is also less messy to send them to the ICU. You don’t have to go through the uncomfortable process of talking to the patient and relatives about death and the futility of further treatment. This situation is not helped by the lay impression that medicine now has an answer to almost all problems. The medical profession has been slow in correcting this image. As with the birthing process in the 1950s, medicine has placed the patients behind heavy doors and arranged them for inspection at specific times and for limited periods. I had two choices in Henry’s case. I could, amidst his panic, tell him that he was dying, even though he was too breathless to dy i n g by ot h er n a m es

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speak. I would have to ask him to nod or shake his head to questions such as, ‘Would you like me to relieve your suffering?’ Of course he would want me to relieve his suffering! I would then have to explain that he would be given morphine; that he would then stop breathing as a result of his underlying disease and partly as a result of the morphine; and that he would soon die. I would have to put the question in a way that gave him a genuine choice, and I would ask for a nod or shake of his head. Perhaps this is what we are expected to do: involve patients with all decisions and respect their wishes – this comes under the heading of autonomy or patients’ rights. In Henry’s case, there was no time to call the relatives or comply with last-minute instructions around tidying up his life. Besides, he was too distressed and exhausted from the struggle to move air in and out of his heavy, wet lungs. He was going to stop breathing within half an hour at the most. His suffering was not only horrific for him, but also for us to witness. 260

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The other possibility was to say to him, ‘I realise it’s hard for you to breathe and I will have to put you to sleep and take over your breathing with a ventilator’. He was so desperate that of course he would agree with whatever I suggested. Should I also be honest and explain that, as he had a terminal disease, we would be stopping the ventilator soon after putting him on it and that he would then die. I felt more comfortable with orchestrating his death in a paternalistic way. One where I would put him on a ventilator, a manoeuvre which is sometimes life saving but in his case would merely relieve his suffering and temporarily delay the dying process. His eyes expressed great relief when I explained that I was aware of his suffering and what my plan was. Should I have also explained that these were the last images he would see on this earth? I didn’t, but as I put him to sleep I was acutely aware of what I was doing and how little difference there was between this and what we do for suffering animals. The difference was that animals probably would not have understood. Henry would have. I was sure that I had to relieve his suffering and make his last minutes on earth more bearable. But I wasn’t sure about my decision to not explain to him the consequences of what I was doing. If I had more time and if he was not suffering so much, I obviously would have talked the matter over with him. Instead, I pretended that this was what I had to do, as if it was part of a life-sustaining or even life-saving plan. I felt that society might have disapproved of me giving him enough morphine to relieve his suffering without then putting him on a ventilator. The morphine would definitely have dy i n g by ot h er n a m es

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relieved his his suffering suffering but but itit may may have have shortened shortened his his life life by by half half relieved an hour hour and and the the act act of of giving giving the the morphine morphine may may have have been been seen seen an to be be directly directly associated associated with with his his dying. dying. This This may may have have been been to interpreted as as euthanasia. euthanasia. The The morphine morphine could could not not be be seen seen to to interpreted directly result result in in his his death death –– that that could could be be manslaughter, manslaughter, or or directly even murder. murder. On On the the other other hand, hand, by by taking taking over over his his breathbreatheven ing by by putting putting him him on on aa ventilator ventilator after after II gave gave the the morphine, morphine, ing was moving moving into into aa comfort comfort zone zone where where II could could be be seen seen to to be be II was saving, not not ending, ending, aa life. life. The The problem problem was was that that II then then had had to to saving, remove him him from from the the ventilator ventilator at at some some stage stage and and II would would still still remove be faced faced by by the the same same dilemma dilemma of of being being seen seen to to directly directly end end aa be life. It’s It’s often often easier easier to to let let patients patients lie lie around around the the ICU ICU for for aa few few life. days or or even even weeks weeks and and let let them them develop develop the the inevitable inevitable comcomdays plications such such as as pneumonia. pneumonia. They They then then die die of of natural natural causes, causes, plications surrounded by by machines machines and and drugs. drugs. In In any any event, event, II wasn’t wasn’t foolfoolsurrounded ing myself. myself. II knew knew my my words, words, ‘We ‘We are are just just going going to to put put you you to to ing sleep now now and and help help your your breathing’, breathing’, would would be be the the last last he he would would sleep hear. hear.

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