Beware The Grieving Warrior

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A CHILD'S PREVENTABLE DEATH A STRUGGLE FOR TRUTH, HEALING, AND CHANGE
LARRY HICOCK WITH JOHN LEWIS
ECW PRESS
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Copyright Larry Hicock, 2004 Published by ECW PRESS zizo Queen Street East, Suite zoo, Toronto, Ontario, Canada M4E IEZ All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any process electronic, mechanical, photocopying, recording, or otherwise without the prior written permission of the copyright owners and ECW PRESS.
NATIONAL LIBRARY OF CANADA CATALOGUING IN PUBLICATION
Hicock, Larry Beware the grieving warrior : a child's preventable death, a struggle for truth, healing, and change / Larry Hicock with John Lewis. ISBN I-55O2Z-673-8 i. Lewis, Claire Death and burial, z. Lewis, John. 3. Medical errors Ontario Hamilton. 4. Hospitals Complaints against Ontario Hamilton. 5. Children Death, i. Lewis, John n. Title. R7Z9.8.H43 zoo4 36z.i'o97i3'5z Czoo4-9oz548-i
Editor: Adrienne Leahey Cover and Text Design: Tania Craan Production and Typesetting: Mary Bowness Printing: Gauvin This book is set in Sabon. The publication of Beware the Grieving Warrior has been generously supported by the Canada Council, the Ontario Arts Council, the Ontario Media Development Corporation, and the Government of Canada through the Book Publishing Industry Development Program. Canada
DISTRIBUTION
CANADA: Jaguar Book Group, 100 Armstrong Avenue, Georgetown, ON, L7G 554
PRINTED AND BOUND IN CANADA
ECW PRESS ecwpress.com
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TABLE OF CONTENTS
FOREWORDS
Chapter 1
chapter 1
THE END OF THE WORLD AS THEY KNEW IT n
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A P R O F O U N D SENSE OF DUTY 35
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C O N N E C T I N G THE DOTS 49
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T H R O U G H A LONG DARK S I L E N C E
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A L I N E IN THE SAND
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85
LETTERS ARE E X C H A N G E D
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101
H O N O U R I N G CLAIRE
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129
WE ARE NOT ALONE

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THE M A R K OF G R I E F
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167
OUT IN THE OPEN

chapter 11
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181
THE K I L L E R BLOW
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197
FAR FROM OVER POSTSCRIPT

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by Larry Hicock
t's said that writers don't choose their stories. I can't say if this is true of all writers, and I don't believe it applies to all stories, but I can vouch for at least one case in point: This story chose me. The idea for this book came long after I'd met John and Brenda Lewis. It built up gradually as John began describing some of the experiences he and his family had been through and still were enduring. Some of his accounts were heartbreaking; others were infuriating. Some were intensely personal; others felt universal. Each incident seemed more compelling than the last. For me, the turning point came in February 2003, when John told me about something that was not only shocking but also downright astonishing (see chapter n). "You couldn't make this up if you tried," I remember telling him. "No, you couldn't," he said. "Nobody would believe you." The seed had been planted, and now it was firmly rooted: This was a story that needed to be written. I didn't think John could do it, but I knew that I could.
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BEWARE T H E G R I E V I N G W A R R I O R
, On Monday, October 15*, 2001, I returned to my home in Hamilton about seven o'clock after spending a long day in Toronto. I was barely in the door when my wife, Irene, told me that our thirteen-year-old daughter, Delaney, had come home from school that day with the saddest news she'd ever heard. Jesse Lewis, her classmate and close friend, had lost her little sister. Eleven-year-old Claire Lewis had gone into the hospital for surgery, but, as Delaney's teacher had told the class, something had gone terribly wrong, and Claire had died that morning. The same day, after school, Jesse had called Delaney. She'd told her about the funeral and asked if she would go to the first visitation, the next evening. I had met Jesse's parents only a few times, either at their house, when I went to collect Delaney after a party or sleepover, or at ours, when one of them came to pick up Jesse. And I had never met Claire, or even seen her, until that night at the funeral home. I wish I could say that I found something comforting to say to them, but I didn't. I stuttered and stammered and barely spoke two words. I don't think it really hit me until that moment, seeing the expression on their faces, how I would have felt if it had been my little girl lying there. Would I have been able to stand there, greeting people, acknowledging their heartfelt but awkward words and gestures, while she lay just steps away? I could not imagine getting through it. Irene and I did not see John and Brenda until four months later, at a parent meeting at one of the high schools we were
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2.
FOREWORD
considering for our daughters for the coming year. We nodded hello in the hallway as we made our way into the auditorium, and after the meeting we exchanged a few brief words. We agreed that night that the four of us would get together. Over the next few weeks, I saw John a couple of times, again when I went to collect Delaney. "We should do something," I would say. "Yeah," he'd say, "we should." "Let me know," I would say. "Yeah, I will," he'd answer. I felt that he was sincere, that he did want to meet with us, but it was obvious that they simply weren't ready. We finally got a phone call from them in June. The school's closing ceremonies were coming up, and Brenda invited us to go out with them for dinner. We saw them a month later, once again at a restaurant, and this time, after dinner, they invited us back to their home for tea. One of the things we heard about that night was Revolution Hope, a trust fund set up in Claire's honour to raise money to support arts programs for underprivileged children. Not long after this visit, John invited us to attend one of the group's meetings, after which I became a member of the organizing committee. It felt good to do something that would enrich the lives of other children. I extended this line of thinking toward the business end of what I thought Revolution Hope needed to do in order to be successful. I emphasized that the most effective fund-raising campaigns focused on a positive, uplifting message. John agreed, but he seemed to be unable to separate Revolution Hope's goals from his own desire to effect change in the health care system. This could turn into
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BEWARE T H E G R I E V I N G WARRIOR
an unhealthy dichotomy, I argued: You can't raise money certainly not from big corporate donors and sponsors while at the same time expounding a controversial and emotionally charged social, legal, and political agenda. John conceded the point. He made a genuine and concerted effort to "stay on message" (a crass and mercenary phrase he picked up from me), but he simply couldn't do it. Ironically enough, neither could I. It was through those discussions how to pursue Revolution Hope's marketing goals while at the same time holding in check John's desire for radical, system-wide change that his sense of moral conviction won me over. I'd been affected by what I saw of the Lewis family's ordeal, but this was different: The more John related his experience to the larger picture, the more I came to appreciate the significance of his advocacy. Ultimately, that agenda John's mission would take priority over fund-raising. Revolution Hope would have to wait. Something had to be done to draw more attention to the cause of personal and organizational responsibility, not only for Claire's case but for all preventable deaths. Part of getting that message out changing the system, changing the attitudes of health care professionals, making people aware of the scale and urgency of medical errors would involve telling this family's sad and frightful tale. And that was the beginning of this story choosing me.
This book began as a solo project, but that plan broke down
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FOREWORD
the first time I met with John to record our first interview. He was forthright, articulate, and expressive not only intellectually but also emotionally. The same day he also gave me copies of his records letters, e-mails, medical documents, research papers together with some of his personal writing. The official material was impressive, but it was his own writing his poetry, his eulogy for Claire, and his journal that resonated. It was raw, unfiltered, straight from the heart. It was obvious that John's role in the book had to be larger, so John got another proposal from me: He would be not only a principal subject in the book but also a collaborator. From that point on, we worked as partners. Over the next two months, we recorded roughly fifteen more hours of conversation. In July, my family and I moved to Montreal, after which John and I remained in contact by phone and e-mail. When the book was commissioned and the writing proceeded in earnest, we corresponded and talked several times a week. That dialogue, together with excerpts from John's journals, forms the heart of this book, both literally and figuratively. I interviewed Brenda just after I started working with John and on two more occasions during the final stages of the writing. In the interim, we also corresponded frequently by e-mail. Brenda was less involved than John, but when we did talk she was every bit as candid; her perceptive comments and observations have been invaluable. Jesse also agreed to an interview. Like her parents, she too was honest and forthright, even in discussing her own emotional problems. Many others have contributed greatly to this story. Dr. Philip Hebert discussed his own dealings with John, pointed
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me toward several important sources of material, and shed much light on the broader aspects of medical ethics and disclosure. Margaret Keatings took on the unenviable task of representing Hamilton Health Sciences Corporation. Bill Frid, the Lewises' brother-in-law, offered his account of the family's ordeal at McMaster Hospital. Susan King provided the background on a story about Claire featured in a Health Canada newspaper supplement. For their input on the story of Revolution Hope, I thank Karen Moncrieff, John McGuire, Jim Moore, and Sharon Mackinnon. Special thanks to Paul Harte, John and Brenda's lawyer, for his extensive and most informative input and for his review of and comments on the final manuscript. On a personal note, I also wish to thank my wife, Irene, for the dedication and zeal with which she tackled the editing and proofreading of my preliminary drafts. For final editing and preparation, and for their thoroughness and enthusiasm, I thank Adrienne Leahey, Dallas Harrison, and ECW publisher Jack David. I also want to acknowledge the efforts of Robert Mackwood, at Seventh Avenue Literary Agency, whose patience and dogged determination in the face of adversity saved this book on at least two occasions when I was convinced it couldn't be done. It has been a great honour to work as closely as I have with John and Brenda Lewis on this book. I am deeply indebted to three others who talked to me about their unique relationship with John and Brenda and about their own experiences with adverse medical events and preventable deaths: Donna Davis, from Carievale, Saskatchewan; Susan
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FOREWORD
Atkinson, from Hampton, New Brunswick; and Barry Lasovich, from Port Colborne, Ontario.
Studies on the issue of patient safety Have been published around the world. (Canada's first-ever report on patient safety was released in June 2004, just as this book was being completed.) These studies offer disturbing facts and figures about just how dangerous a hospital can be. They point toward effective remedies and solutions. To varying degrees, they also address the related issue of medical disclosure admitting one's mistakes and taking responsibility for them. It is vital that we understand the magnitude of these issues, but it is not sufficient to study the macrolevel alone. It is too easy to lose sight of what the statistics really are. It is too tempting to take comfort in the trend lines assuming, of course, that they show improvements. But if ten thousand Canadians die this year as a result of preventable medical errors down from, say, eleven thousand last year should we congratulate ourselves? What if one of those ten thousand was your child, your spouse? Would you find solace in knowing about all the countries in the world that have a worse safety record than Canada does? Perspective changes everything. And that, as I came to realize during the process of working with such people as listed above, is really why this book needed to be written. Here you will see the microlevel not provincial statistics or national forecasts but the lives of individual people. There
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BEWARE THE GRIEVING WARRIOR
are many talented and selflessly dedicated doctors and nurses in this world. Only a small number of them are guilty of negligence or malpractice, and only a few of them (or so we hope) do not disclose their mistakes. But take a hard look at the consequences, not at the percentages. Look at the faces, not at the numbers. In the particular microcosm shown in this book, the victims are innocent children. Their families, coming as they do from diverse walks of life, have little in common but the pain and heartbreak and grief that still pervade their every waking moment. It's enough to make a grown man cry. Maybe it's enough to bring out the warrior in all of us.
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Jesse and Claire at their Aunt Mary's with Raggedy Ann dolls
A digitally enhanced picture of Claire from her cousin's wedding, July 2001
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Claire, John, Jesse and Brenda at John's graduation ceremony
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The Sunday before Claire died. John was reassuring her everything would be fine . . .
At Grant Avenue Studio the Wednesday before Claire died
Claire and Jesse at John's best friend's wedding, July 2001

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Claire's grade five school picture. She died before the grade six pictures were done
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Claire loved cats and loved to draw and colour
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Qqife tewb
Claire did this water colour on October 7, 2001, for our Thanksgiving dinner, a week before she died . . .
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Jesse did this acrylic oil painting taken from Claire's school picture on September 22, 2002
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Another cat in "Claire's Cat Collection" scuba cat being my personal favourite
Ladybug Halloween cat, which became Revolution Hope's mascot
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Claire did have a really good sense of humour . . .
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Claire wrote this prayer five days after she received her diagnosis of a brain tumour
This prayer with artwork was done by Claire shortly before she went into the hospital for surgery
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Claire was an avid writer. This is the cover to the book "Tushes Stockings" about (what else?) a cat
Sunflowers in pencil and pencil crayon, honest and elegant like Claire
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Claire liked to draw in different mediums. This was done simply with a pencil, for her mother
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FOREWORD
by John Lewis
'
a child impact on every facet T he death ofspiritual,has a profoundpsychological; friends, , of life economical,
:
family, and marriage. The very nature of a child's death creates what is known as a "complicated" grief, a grief that does not follow a predictable course such as can be measured or observed in other types of death. A child's death raises unimaginable stresses and horribly real feelings of guilt and responsibility for the surviving parents, not to mention the indescribable sense of loss. A preventable death such as Claire's increases these feelings exponentially. And if a preventable death is combined with an unwillingness by the health care providers involved to take responsibility for their actions, it leaves in its wake an anger of unspeakable magnitude. Anger can create change; anger can also destroy and obstruct any hope of change. My advocacy was born out of anger, hurt, and loss. To that end, Beware the Grieving Warrior carries my hopes for change.
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BEWARE THE G R I E V I N G WARRIOR
It's incredibly sad that a wonderful, loving, creative, intelligent child had to die in order to effect change, but Claire's death has brought change not only to our immediate lives. I know that it has and will also bring change to the larger community around us. Claire's death fuelled an advocacy that burned like a prairie grass fire out of control, pushing me to the centre of issue after issue. Fearless and naive, I stumbled to the front lines unabashed and alone with my weapon of choice, the truth.
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10
chapter 1 ""-jr"1 ( ** ) \ ""\ i * ~ > ^
AS THEY ENEW IT
t begins the instant you hear the words, before they even register: Your daughter has a brain tumour. From that moment on, once the shock wears off and you grasp their meaning., their implications, your world is a living hell. The weight of it does not lift, does not subside, does not get the least bit easier to deal with, cope with. It is there in all your waking hours and beyond, and it remains until suddenly you look up and see the surgeons coming out to the waiting room, heading in your direction. They have been in the OR, and you have been out here, for almost nine hours. As they draw closer, you see that their gowns are covered with blood, her blood, but you do not flinch; you hardly notice it. Your attention is riveted to their faces, their eyes, until finally you see what you've been waiting for, hoping for: that faint smile. It took eight weeks for John and Brenda Lewis to reach this moment. Now it was here at last, now it was over. Their little girl was going to be all right. The procedure took longer than expected, but it was what doctors call "uneventful." In
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II
IEWARE THE GRIEVING WARRIOR
fact, it all went remarkably well. Dr. Hollenberg said he thought they got ninety-eight, maybe ninety-nine, percent of the tumour. There were no bleeds, no real complications at all. "She's already extubated," Dr. Hollenberg told them. "We had the breathing tube out before she left the OR. She's awake, alert, she's moving, talking, and she wants to know when you're coming in to see her." John thought Dr. Hollenberg looked misty-eyed as he spoke to them, but he couldn't be sure; maybe it was just his own tears. Dr. Reddy looked happy too. "I put five fingers up, and she counted them," he explained. "Both eyes are fine and her speech. She's absolutely fantastic." John and Brenda were overcome with joy and relief and gratitude. Could there be a better feeling in the whole world than this? They felt the tension and fear dissipating simply vanishing in the blink of an eye after all these long days and weeks. Yet even as they began to relax, they clung to the two surgeons' every word; they studied every gesture, weighed every nuance. They had waited a very long time to get to this moment, and now they were going to savour every second of it. And then suddenly, moments later, they were with Claire. She looked terrible; even John, a registered nurse with plenty of post-operative care behind him, wasn't prepared for this. Her face was swollen, her eyes badly puffed. Her head was wrapped in cotton gauze, but the incision, running across the top of her skull from one ear to the other, was still visible. Her bed was surrounded with iv poles and bags of fluids and
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IZ
THE END OF THE WORLD AS THEY KNEW IT
a great profusion of tubes. Claire looked weak, groggy, but when they came to her side she opened her eyes and gave them a smile. Is there a more gratifying sight than this? Some ten hours earlier, Claire's eyes had been fixed on her father's eyes as the attendants had wheeled her bed down the corridor. John was wearing a mask and greens, just like everyone else, and they were going to let him stay with Claire until she went under. "When you get into the operating room, just look at me," he told her. "There's lots of people, lots of equipment, but I'll bend down nice and low so you can see me." When they got inside the OR, he leaned over and folded his arms across her chest and rested his head gently on his hands so that his face was right up close to hers. They talked and made jokes about the cats Pongo, the biggest, fattest cat you ever saw, and Duff, Claire's own pet, probably at that very moment sound asleep in his favourite spot, under her bed. Then they sang a song together, with silly lyrics they'd made up. Claire was laughing and smiling almost till the anesthetics took over; one of the OR nurses remarked on the ease and smoothness of her induction. And now John smiled; she was back, aware if not yet alert, and there he was, standing over her just like before. He thought of Claire's poem, one of several she'd written just a few days earlier: "The warmth of you wrappe around me / cheers up my soul / When you stand with me I am not afraid. . . . " Claire had been very afraid, at the beginning, during the tests, and certainly when they were back in the doctor's
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office and her parents told her what he'd said to them. They'd found a tumour at the base of her brain that's what was causing her headaches and vision problems. It wasn't malignant, which meant it wasn't cancerous, it wasn't going to spread, but it did have to be removed. Still, these were frightening words "operation," "brain surgery," "tumour" to an eleven-year-old child. Brenda and John were determined to remain honest and open with Claire about the procedure, to help bolster her strength, to help her confront her fears before they grew too large. But what did they themselves know about this thing with the strange long name slowly growing inside her head? Almost nothing. The surgeon offered little insight; perhaps he assumed that John's background (as a registered nurse) made it unnecessary. He showed them the CT scans and the MRI film, but he talked more about the surgery than the tumour itself. John decided that his first priority was to learn everything he could about Claire's affliction. He was employed on a permanent part-time basis by Hamilton Health Sciences Corporation, the same institution that was treating Claire. At the same time, he was also a part-time student at McMaster University, working toward his bachelor of science degree in nursing. As a result, he had full research privileges, including access to a comprehensive array of library and on-line resources. On that first day, as soon as they left Dr. Hollenberg's office, at the McMaster University Medical Centre, he stopped next door at the campus library to pick up some literature. The surgeon was quick to emphasize that Claire's tumour,
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called a craniopharyngioma, was benign and extremely slow growing. If not for its location, at the base of her brain, it would be virtually harmless. But there, left unchecked, it would continue to exert pressure on Claire's optic nerves, impeding her vision and perhaps even causing permanent, total blindness. And there were other risks: Craniopharyngiomas adhere to a vascular structure called the Circle of Willis, which encircles the brainstem, a kind of central junction from which blood is delivered to each region of the brain. The tumour can therefore impinge on any of a number of neurological activities, including speech, sensory awareness, emotional and intellectual development, and motor skills. The tumour is also adjacent to the pituitary gland and hypothalamus, which produce most of the body's major growth hormones; as a result, it poses particular developmental risks for preadolescents. Equally important, equally obvious, and no less frightening, the location of the tumour adds great risks to the surgical procedure. The tumour is comprised of either a tough cystic or a calcified material that must be scraped from the surface of the nerve. In the Circle of Willis region, an arterial bleed would be hard to locate and almost impossible to stop. The optical nerve, as just one other example, is no thicker than a strand of hair; even the slightest cut could damage its functioning. Given the delicacy and extremely high risk of the surgery, John and Brenda wanted a second opinion. Three weeks later they met with Dr. John Rutka, head of the neurosurgical program at Toronto's renowned Hospital for Sick Children. Dr. Rutka confirmed the diagnosis; he told the Lewises that he
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15
was going to be out of the country for two months but that he would be happy to refer the case to one of his colleagues. "If this was your child," John asked, "what would you do?" Dr. Rutka answered without hesitation. "I would trust Hollenberg. He's probably the best neurosurgeon in this country. And he's working with Reddy? Mr. Lewis, it doesn't get any better. Hollenberg, Reddy you're in excellent hands." You're in excellent hands. Claire was in the room, only half-listening perhaps (by this point, she was sick and tired of all the tests and examinations and doctors' appointments), but the words did register. She trusted her parents; she knew they would always make the best choices and the right decisions. Didn't Daddy go to McMaster University, right next door to the hospital? Didn't he work for Hamilton Health Sciences himself? They must be good places, then, mustn't they? The idea of an operation was still frightening, but she was trying hard to be brave. At first, John and Brenda did not reveal the full extent of the danger either to eleven-year-old Claire or to her thirteenyear-old sister Jesse, but they talked often, and as openly as they felt they could, about what was going to happen to Claire. For the longest time, it seemed like Jesse didn't want to know. "My parents would ask me did I have any questions," Jesse said, "and I'd say no, and I'd get mad, because I was scared and worried, and I didn't think I wanted to know, because I'd get even more scared." But on the evening before Claire's surgery, the family had a special dinner
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together take-out Indian food, extra spicy, one of Claire's favourites. After dinner, they recited the poems that each of them had written for the occasion. Then they had another long talk about what was going to happen in the surgery. This time Jesse did ask questions and listened more carefully. "We all sat down in my parents' bed," Jesse told me, "and we talked about it."
They explained about the chance of dying, and what exactly the operation is, and the kind of tumour it was. It took a lot of the scariness out of what was going on. And then I kind of relaxed. I guess my parents relaxed a bit, because they knew that we weren't as scared anymore.
Helping the children understand the procedure was a learning experience for all of them. And many times, John later wrote, Claire was not the student but the teacher.
I spent a lot of time with her explaining the tumour its location, the surgical procedure to resect it, preparing her for the diagnostic tests, preparing her for surgery itself, a hugely fearful task. She took all of this information in with trepidation and some tears, but mostly with trust and confidence, seeing it was coming from her father, not a total stranger She taught me a great deal about courage, not only through her attitude about facing her surgery, but about my own ability to be perfectly honest with her She helped me learn to speak the truth without the use of euphemisms, without resorting to avoidance, without looking to others to fill in the blanks.
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BEWARE THE: GRIEVING WARRIOR

I remember one night tucking her in at bedtime. I could sense something was wrong, that she was holding something back, a question. She was never one to open up quickly or completely, though she did get better at it. I coaxed it out of hen She asked, "Could I die from the surgery?" It was a question I'm sure she didn't want to ask. I told her quickly, and frankly, "Yes." We both cried and held each other She sobbed as I rocked her and stroked her head. I felt horrible, being the bearer of this news, thinking maybe I should have lied about this one. Then I realized a lie would have been morally wrong. The absolute honesty in her question demanded an honest answer
But now, as they stood over Claire in the recovery room, all of that seemed like it had happened a million years ago. The only thing that mattered now was that they were here, together. It was over, John kept thinking, at last it's over. Shortly afterward they were joined by Dr. Reddy. "How are you, Claire?" he asked. "Okay," Claire answered quietly. The doctor asked her to open her eyes; then he held up his fingers and asked her to count. He turned to John and Brenda. "Her vision has improved in the last hour," he said, smiling again. "She's looking fine, she's looking just great." After he left, John and Brenda took chairs and settled in at Claire's side. Claire slept almost continuously, lost in the fog of the anesthetics, exhausted physically after this long, arduous day. The operation had been performed at the General Hospital, a sister facility to McMaster (both are part of Hamilton Health Sciences Corporation, one of Canada's
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largest health care institutions). At that time, the General was equipped with the best surgical microscope and imaging technology for this procedure; on the other hand, McMaster's intensive care unit had specialized pediatric resources. It had been decided, therefore, that Claire would be moved to McMaster for post-operative care. She was transferred by ambulance later that evening. John and Brenda accompanied her and stayed with her in the icu for another few hours. Then, with Claire safely settled in and resting, they decided it might be a good idea to go home and get some rest. It had been a very long day, and there would be many more long days ahead. John and Brenda were expecting to spend the next week or two taking turns at the hospital with Claire so that during her recovery one of them would be with her at all times. They left around 2, a.m. and got back by nine, together with Jesse. Seeing her little sister for the first time after the surgery was a frightful experience. "I could see the incision on the side of her head, and that just scared me so much. There was blood in her hair, and there was stitch-work, but it was only on one side, you couldn't see it on the other side. And she had this little hat on, over it, and she looked so cute with the hat, and one of her eyes was swollen." Claire was still groggy and listless, which was not too surprising, but there was something else. Jesse was sitting close to Claire when her behaviour suddenly began to change. "My parents kind of stepped aside they didn't go out of the room or anything and then, when I went to talk to her, she turned her head all the way to the opposite side and then
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started just shaking. And that scared me so much." Claire was twitching, sporadically and only slightly, but it was enough to alarm all of them. John went looking for the nurse. "What's going on with Claire?" he asked at the nursing station. The nurse looked up at him blankly. "Why? What's wrong?" "She's twitching. She's flopping around like a fish out of water. It looks like she's going to have a seizure." "Oh, no, no, she's fine," the nurse insisted. "The doctors were just in, she's okay. No, no, it's not seizures." Her tone was condescending typical icu nurse mentality, John remembers thinking to himself: They don't treat family members as "partners" so much as a nuisance, to be put up with, tolerated. This scenario John looking for help, for answers, and the nurse dismissing him happened twice more. "She's not focusing," he said at one point. "Have you noticed that?" "She's fine," the nurse retorted. "I just checked her, she's okay." But Claire wasn't okay. According to her chart, at eleven o'clock that morning she had a full seizure. Jesse was sitting next to her; one minute they were talking, hugging each other, and an instant later Claire arched back and began to convulse. Jesse screamed hysterically. While John ran for help, Brenda stood at Claire's side to keep Claire from falling off the bed. The resident gave her Ativan, an anti-anxiety drug, and Claire began to stabilize almost immediately; the seizure
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lasted just three minutes. She was taken immediately to radiology for a CT scan. John called his sister and asked her to come to take Jesse home; then he and Brenda went into the waiting area outside the lab, just down the hall from Claire's room. They couldn't see Claire from there, but John could see the radiologist, through a little window, sitting at the computer. John watched his eyes intently, looking for a change of expression as the readings came up. Moments later a resident came out to them with the results: "She didn't bleed," she said. "Thank God," John cried. Seizures, he knew, are frequently attributed to post-operative bleeding, one of the most dangerous risks facing Claire. "She's fine," the resident continued. "Her brain is fine, so we think it may be the iv fluids." In simple terms, Claire was retaining more fluids than she was releasing through urination, and the excess fluids diluted her blood. The fluid overload resulted in a reduction in her serum sodium the amount of sodium in her blood relative to its water content. Sodium deficiency can lead to a condition called hyponatraemia. Its symptoms range from dizziness and disorientation to seizures or coma. Hyponatraemia is easily corrected through an adjustment to fluid balance a reduction in water content to increase the proportionate amount of sodium. However, in a post-operative situation, particularly in the case of children, low sodium can cause serious neurological complications; constant monitoring of fluid balance is therefore crucial. Another risk of fluid overload is that the excess fluids can quickly build up in the
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brain, causing it to swell, until finally the pressure leads to seizure. A certain amount of post-operative swelling is common to most neurosurgical procedures, and even mild seizures, such as Claire's, aren't considered unusual. Whether hyponatraemia was also a factor in her seizure was not discussed. At this point, what seemed to be the most important news and the best news was that Claire was not bleeding. Her iv was changed to a normal saline solution, thus decreasing her free water intake, and she continued to stabilize throughout the day. That evening Claire was visited by her aunt and uncle, Brenda's sister Linda and her husband Bill Frid, and her fourteen-year-old cousin Rachel, who'd just driven in from Kingston to see her. "She opened her eyes," Bill recalled. "She recognized me, she hugged me, she was up and talking, and I felt very good about it." He felt even better after he saw Dr. Hollenberg, whom he'd known for some years; Bill is a social worker specializing in counselling young cancer patients and their families, and he is a former Hamilton Health Sciences employee. Dr. Hollenberg told Bill he was extremely optimistic. "I can never say a hundred percent," he said, "but it's as close as you can get." When Bill asked about the seizure, Dr. Hollenberg told him, "Well, we expect those, but I think she's out of the woods." By Sunday, Claire appeared to be in excellent shape. She spent the morning with John, Brenda, and Jesse smiling, joking, talking, asking all kinds of questions. Could she see the incision? How much of her hair did they cut off? How
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are the cats doing? What's for lunch? After seeing Claire's seizure the day before, Jesse had been reluctant to come back to the hospital, but now she was glad she'd come. She and Claire had a wonderful visit.
She was talking, and she was eating Popsicles. She was sitting up and everything, and she still had her little hat on, and it was funny it looked like one of those baby caps, but it was like bigger; and we were making fun of her We said she looked like Popeye because one of her eyes was swollen, and she thought it was funny too.
The Frids came in at noon, and together the four adults and their three children had a lively and very happy visit. At two o'clock, Claire said she was feeling a little tired, and she thought she should have a nap. The Frids were about to head back to Kingston, a four-hour drive from Hamilton, and John and Brenda wanted to take them out for lunch. And with Claire's recovery going so well, it was possible Claire would be transferred from the icu to a regular ward as early as that afternoon. Brenda was also going to stop at home afterward to pick up some of Claire's clothes, just in case.
It really is true, John tells me; it really does feel like when you're in a car accident. Everything happens so quickly, but you see it all in slow motion. You watch it happen frame by frame, until suddenly the onrushing vehicle is right in your
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BEWARE THE G R I E V I N G W A R R I O R
face, and you black out. Until that last millisecond, everything is a blur, like a dream or a nightmare, yet somehow every detail is crystal clear, preserved vividly, permanently, in your memory. This is how John and Brenda remember the events of that Sunday evening, so precisely and accurately that John's own notes about Claire's symptoms, changes in her condition and behaviour, and his recollections of who did what when and how it happened would later match almost perfectly the hospital's own records. John, Brenda, and Jesse went into Claire's room at 6:20 p.m. 1820, John would write, just to be consistent with the hospital's terminology. Brenda knew the moment she saw Claire that she was in trouble. She was lying flat, with her eyes closed, but she looked neither restful nor comfortable. Brenda turned to John, who wasn't yet through the door. "What's wrong with Claire?" she asked, her eyes already filled with fear. Jesse stood frozen in the doorway, too frightened to move. John looked past Brenda to Claire. Before going in, he quickly took Jesse to the waiting room, then went straight to the nursing station. "What's going on?" he asked. "Claire doesn't look good." The nurse looked at him, unperturbed. "I just did her vitals," she said. She got up and looked up, from the doorway, at the computer monitor in Claire's room. "She's just fine." "She's not fine," John snapped. "Have you looked at her? She's not fine." The nurse shrugged and told him not to worry. John called his sister Janet and asked her to come and get Jesse; then he joined Brenda at Claire's bedside. "Claire?
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Claire? Can you hear me, Claire?" She was not moving, not responding. At 6:30, she began to stir, rocking from side to side; then she tried to get up out of bed. While Brenda held her down, to keep her from falling, John went for help. "Call somebody now!" he yelled. Several long minutes passed before the nurse came. Claire was still struggling, pushing and pulling at John and Brenda as if to escape the discomfort, the pain. John recognized her behaviour as a likely sign of intracranial pressure (ICP): her brain swelling up and pushing against her skull. The nurse put in a call to the resident; the hospital's paging records place the call at 6:43. At 6:55, there was still no sign of the resident, and he was called again. The resident physician arrived at 7:00. By this tim Claire had become quiet; she was no longer fighting, she was losing her strength. The resident took Claire's hand and pressed against the cuticle of her index finger with a pen no response to pain. This test is a standard measure of neurological activity; nonresponsiveness is an obvious indication of trouble, but the resident took no subsequent action. In a later statement, he attributed Claire's condition not to ICP but rather, as evidenced in her blood work, to an electrolyte imbalance. Initially, he advised the nurse to continue running the same iv. He stated that he subsequently ordered Mannitol, an osmotic diuretic, in order to quickly flush out excess fluids however, there is no record of this order on Claire's chart. In any event, the fact remains that the resident was in and out of Claire's room in less than five minutes despite her obvious lack of improvement.
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At 7:10, John saw that Claire's breathing was starting to slow down, and he called the nurse in once again. "What's going on?" he shouted. The nurse told John that the attending physician had called; he'd cancelled the order for Mannitol and instead ordered a normal saline solution. When the nurse came back to the room at 7:15, Claire was unconscious. The nurse began to prepare a ventilator bag and oxygen. John looked at her, stunned. "You know she's going to stop breathing on us," he said to her quietly. The nurse didn't answer. She looked dumbfounded, John thought; she looked as frightened and uncertain and panicstricken as they did. By 7:20, Claire was down to four breaths per minute; the normal rate is twelve to sixteen. When the nurse returned, Claire was drooling another sign of ICP, indicating that the swelling of the brain is now pushing down against the saliva glands. The nurse proceeded to change Claire's pillowcase. By this point, Claire was almost totally unresponsive. Suddenly, with Brenda and John standing at her side, she turned her head slightly toward them, and then she stopped breathing. John rushed out into the hall, screaming for help. "Claire's crashing! We need an RT in here room one now!" When the respiratory therapist and the nurses rushed in, John pulled Brenda out of the room. He found a storage room across the hall and took her inside to keep her away from the fray. He knew what was going to happen, and he didn't want Brenda to see it. Claire's room would already be
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filled with people, the atmosphere tense and frenzied, as the RT worked to try to establish an airway. By now, the resident would be there, and surely the attending physician would have at long last made an appearance. "Where had he been?" John would later ask, but at that moment, alone with Brenda in a storage room, his only thoughts were on his little girl. He fell to his knees, sobbing. Brenda, crying hysterically, crouched down with him. "Oh, please, God, please," John cried. "Please, please, please." Moments later Claire's nurse opened the door. She told them that Claire was breathing again, that she hadn't been without oxygen for too terribly long, that "she should be okay." For an instant, Brenda felt relieved. She wanted to believe that Claire really would be okay. She held on to that faint and fleeting wisp of hope desperately, though she knew as well as John did that Claire was not all right at all. A few minutes later another nurse came into the storage room and told them they couldn't stay in there. She escorted them out of the ward, out into the corridor. Suddenly they were locked out of the icu. They stood there next to the elevators and the pay phones and all the people coming and going waiting to hear what was happening to their daughter. They waited for more than forty minutes. No one came out to tell them what was happening; no one talked to them at all. When Claire's surgeon arrived shortly after 8:00 according to the paging records, he'd been called at 7:45 John and Brenda were still standing in the hallway. "What the hell's going on?" he asked them. "I don't know," John said.
*J> CJ1
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"Come with me," the doctor said. He charged toward the icu; then he kicked and banged at the door until it opened. "What's going on here?" he asked the nurse. He reached for Claire's chart and glanced through it. Before going in to see Claire, Dr. Hollenberg saw that John and Brenda were taken to a meeting room. Brenda recalls that moment as one of transition, from one world to another, from reality to unreality:
Going into that room, suddenly it was . . . it's like you become this viewer A lot of people say it's like watching a film. You're suddenly outside yourself, and you have this horrible sense of something terribly profound taking place and that you can't stop it.
They sat alone in the meeting room until 8:30, when Dr. Hollenberg came back. Accompanying him was the attending physician, whom John and Brenda hadn't seen at all until that moment. There was a nurse with them, a different one, whom the Lewises hadn't seen before. So, too, was the resident physician conspicuous in his absence. There was a fourth person, also unknown to the Lewises, who was introduced as a social worker. The four of them came in quietly and sat down across from Brenda and John. No one looked them in the eye, no one spoke to them, except Dr. Hollenberg. "Mr. and Mrs. Lewis," he said finally, his tears welling up, "I'm so sorry. Something went terribly, terribly wrong, and . . . we think Claire is brain-dead."
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Again, John recalls, everything shifted into slow motion. He looked over at the attending doctor, who abruptly turned away, unwilling or unable to make eye contact. After a long moment of silence, Dr. Hollenberg turned to the attending. "Will you call the coroner? Or should I?" "I'll call," he replied quietly. "I'll take care of it." The six of them sat quietly for a few more minutes. Someone asked, "Is there anything we can do for you?" "No," they answered with a nod. "Would you like to see a chaplain?" "No," John said firmly. A moment later someone raised the subject of organ donation. Their response, Brenda recalls, was instantaneous despite the shock and trauma that had just been thrust upon them.
We didn't even have to discuss it. We just said yes. Because it didn't really seem like the alternative, to say no, was viable. I can't imagine why you wouldn't. We just looked at each other and said, "Yes, we'd like her to be a donor"
John knew what was coming next. There was a mandatory twelve-hour waiting period before Claire could be officially declared brain-dead. Candidates would be located, their doctors would be contacted, transplant teams would be mobilized, the organ harvests would commence, and at the appropriate moment life support would be withdrawn. John and Brenda agreed to return in the morning to sign the necessary papers. Again the room was still, the air filled with a thick, heavy silence. Then the others got up, leaving John
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and Brenda to themselves. "How do you describe that?" John pondered. "Just sitting there, knowing full well that she's dead." Only a few moments went by before there was a tap on the door. It was the hospital chaplain, who had decided, against their wishes, to join them after all. "I found that really irritating," Brenda said. "We didn't know him, and we weren't comfortable with him. And he kept looking at us like he wanted something from us. Like he wanted us to come to him, and it was like, 'Would you please back off and just leave us alone with this?' It was really not comfortable at all for either of us." When the chaplain did leave, finally, and only at John's insistence, they were suddenly faced once more with the silence of the room and, harder still, trying to come to terms with what lay ahead. "I remember thinking I was never going to be able to leave that room," Brenda said, "that if I left the room it was going to make it real. I thought, I don't know how I'm ever going to get up on my own power and walk out of this room." Then came the phone calls. The first one was to Janet. John told her she had to bring Jesse back to the hospital right away. Even before he called, Jesse told me, she'd sensed that something had gone wrong. "My aunt came and picked me up, and we started driving back, and I started feeling really, really sick to my stomach. I started feeling really sick, and my knees were shaking like I knew something happened. And then when my dad called and said come back to the hospital, I started crying. It was weird,
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because I felt like I knew when it happened." John called his other sister, Mary, who lived in Chesley, about two hours north of the city. Then he called Bill and Linda, who'd only just got back to Kingston. Bill remembers the drive back to Hamilton that night as "surreal."
We were very silent all the way back, My daughter in the back seat, my wife beside me, there .was not a lot of talking. And . . . there's a certain level of guilt, for having been so positive. For the month before the surgery, I talked to everybody I knew in the field about a craniopharyngioma.The oncologist I worked with for ten years, the first thing she said to me is "Kids don't die from this tumour" I talked to a guy who does brain tumours, one of the leading surgeons in the world, and he reassured me. So i was able ' to pass that along to Brenda and John. So, driving back there, it was where did all the reassurance go?
At ten o'clock, Claire was taken to radiology for another CT scan. When they brought her back to icu, John and Brenda went into the room to be with her. Already, Brenda realized, she looked different; even though she was still breathing, through a ventilator, she felt different. Already she was cool to the touch; already Brenda had a sense that Claire really wasn't there. This wasn't Claire anymore; it was just the shell of her. They stayed in the room, sitting with Claire, until Janet arrived, and then they had to go out to tell Jesse what had happened to her sister. They stood together in the hallway, crying, holding each other, as John broke the news. "I just
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started crying," Jesse said. "I remember staring at the walls, and it felt weird, like it was just a dream. I was so mad at the doctors and the nurses, and I was mad at my parents, because I thought they should have done something, but I realized that they couldn't there's nothing they could have done to bring anything back and make everything normal." John felt angry too and helpless, unable to spare Jesse from this nightmare.
Jesus, that was awful.Telling her Say ing, "Jesse, I'm so sorry, Claire's dead," and just feeling her knees collapsing under her There's no describing that That was as hard as Claire dying, telling Jesse. "Oh, Daddy, no, please, no," she cried. "Jesse, I'm so sorry to tell you this." My heart broke for her I wouldn't be able to fix this one for hen .. Things haven't gotten much harder than that.
They stayed at the hospital till midnight. As they were leaving, John spoke to the nurse:
I said, "If she codes, you don't resuscitate her" And she said, "Oh, thank God I'm glad you said that. I was so worried about that. I didn't know what we'd do." I said, "You have my word you leave her alone, and you call us. Her heart stops, you don't touch hen don't lay a finger on her" And she wrote that in the actual note, "Father requested" with quotation marks '"Don't touch her'"
Mary got to the Lewises' home about 1:30, and the Frids arrived by 3 :oo. Brenda had given Jesse something to help
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her sleep and got her into bed. Now the family sat in the living room. "We lit some candles, we sat and hugged, had a good cry," Brenda recalls. After a while, John ended up in front of his computer in his office just off the living room. Bill joined him, and as the two of them sat talking Brenda remembers looking over at them and seeing John's face as they spoke. She remembers hearing, for the first time, the words that were as devastating as the tragedy itself. "You know they killed her, don't you?" John said. Bill hung his head and nodded. He did know without having been there or knowing any of the details; this shouldn't have happened. "I hope you're wrong," he answered. When Brenda heard John's words, she realized that she knew it instinctively too. So did the doctors and the nurses and everyone else at the hospital who'd seen Claire that evening. This horrific death should never have occurred. But what now? What next? If this was true, that everyone knew what had happened to Claire, then all that remained to be seen was if and how, and when, and under what circumstances, and by whom the truth would be revealed.
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cMo-fofofr
A PROFOUND
>~; ,~.' \ ii IT' C' ? _"- j T V
must been five in the morning before anyone I tin, andhaveone actually slept. Suddenly the sun was turned no rising. Suddenly it was time to go back to the hospital. There were meetings to attend, papers to sign, good-byes to be said. At each turn, it seemed, the horror of it all came pounding back at them, like waves, one after another. John and Brenda could see things happening around them, feel each new jab, but they were somehow oblivious, impervious. They were in shock, yet they remained fully aware alert, clear-headed, mindful of all that was said and all that remained unsaid. And throughout the ordeal of that first day, and that first week, of life without Claire, they kept their bearings. They seemed to know, instinctively, what had to be done. Whether confronting the harsh realities of medical and legal procedure, or deciding how their little girl was to be laid to rest, John and Brenda let themselves be guided by their instincts. It was intuition, they would say, nothing more and nothing less.
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Bill drove them to the hospital for their nine o'clock meeting. With the mandatory twelve-hour waiting period drawing to a close, Dr. Hollenberg confirmed officially that Claire was brain-dead, which John and Brenda already knew, and they talked again about organ and tissue donations, which they'd already agreed to. They were expecting to hear_more about what had happened to their daughter something, anything but nothing further was said. Just like the night before, the air was filled with tension, discomfort, and long gaps of silence. "No one would look us in the face," John said. "They'd look at their feet, at the walls, up at the ceiling; they'd look left, look right, look at my belt buckle. . . . I was trying to get their attention, and no one looked me in the eyes." An hour later they were joined by Linda, Rachel, and Jesse. They went together to the icu to see Claire. Everyone knew she was no longer with them, that a machine was breathing for her, but there she lay before them, as if asleep, looking perfectly normal. They said their good-byes even if they couldn't make sense of it. Claire was pronounced brain-dead at 10:45 a-m- Jonn and Brenda stayed with her as the nurses from the transplant team began their preparations. Neither of them had the strength to go with her to the operating room. By mid-afternoon, they felt it was time to go. John remembers leaving Claire's room clutching a lock of her hair. He remembers hearing the mechanical hiss of the vacuum hinges on the big metal doors as they began to slide shut behind them; then he remembers collapsing in the hallway.
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A P R O F O U N D 5EMSE OF DUTY
At 11:30 that evening, John got a telephone call from the transplant nurse. She said that recipients had been found and that they were waiting for the surgery teams. The organ harvests were performed that night between midnight and two o'clock. The final entry on the anesthetic record was "ventilator off, lungs removed @ 2,:io." At about three o'clock, John heard a helicopter passing over the house; it must be the surgeons, he thought, heading out with Claire's organs.
The autopsy was performed in Hamilton on the morning of October i6th. Later that day John received a call from the local coroner, Dr. Richard Porter. It is required by law that any information pertaining to an autopsy must be given to the family of the deceased before any other individual or institution, but, as John explained, it is highly unusual for family members to be contacted by telephone. "He said, 'Based on the results of the autopsy, we've issued an alert to the hospital regarding the use of the iv solution.' And that's all he'd get into. Well, when you're alerting people, something's wrong. Obviously. The autopsy results are strictly confidential. It goes from the pathologist to the coroner, and that's it. Before anybody sees anything, it goes to the family. And they're really, really strict. That's enshrined in the coroner's act. In this case, the alert went to us and the hospital simultaneously, because of the extenuating circumstances extreme issues of care. And that sent my red flags up even more."
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BEWARE THE GRIVING WARRIOR
The coroner's phone call only confirmed what John already suspected no, what he already knew and it convinced him that the hospital knew it too. "They knew they killed her. The coroner called on the i6th and told them. Like, whatever you guys did to this child, you better figure it out and not do it again." He also took the call as a clear signal that he had to take action and that even now, in the midst of preparing to bury Claire, he couldn't delay. "I knew they'd killed her and that there needed to be documentation. It was just intuitive to get this written down, to the best of my knowledge, write down my perceptions of what took place at what time, who said what, who did what." As John worked on this letter, he also started on Claire's eulogy, which he had insisted on writing. This was the latest of many responsibilities that he felt compelled to take upon himself. Earlier that day, at the funeral home, John and Brenda were discussing arrangements for the service when he turned abruptly to the funeral director and told him that he was going to dress Claire. "I said, Til be dressing her. This is not a request. This is what will happen.'" "Are you sure?" asked the funeral director. "I'm sure," he answered. In one of his university courses, on palliative care, there was a section on grieving and mourning practices in different cultures; John remembered reading about a family in the United States whose five-year-old son had died. "They dressed him, very lovingly, and with great respect. And they spoke about . . . not closure, but a sense of connection, and a sense of duty. And to have strangers dressing Claire's
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A PROFOUND SENSE OF DUTY
naked body just. . . it bothered me. There was a sense of 'It's my duty, as her father.' A profound sense of duty. . . . " The idea had not come up at all until that moment, not even with Brenda. At first, she was reluctant about participating. "Just realize," John told her, "if you can't do it, it's fine, I can do this." Brenda agreed, with great trepidation, to at least try. When they told Linda and Bill what they were going to do, they asked if they could help. "Everybody was kind of appalled by it," John said, "but I think they really saw something in it, intuitively, you know? And going back to cultures that deal with death so much better than us they wash and anoint the body, they wrap a body, the father carries the body. If it's buried, the father lays the body in the grave. The women are involved with the anointing and the cleaning. In some Indian cultures, a husband dies, and she helps build the funeral pyre and lights it. There's just so much of that, the world over." The four of them went to the funeral home the next afternoon. John remembered the emptiness of the room. "They had the room completely bare of everything except a couch," he said.
She was on one of the metal tables they use, on wheels, like a cart, and there was a sheet under hen and then just a pale yellow sheet over her up to her neck. We walked in, and Brenda collapsed.To see your child's body lying there, it's just Everybody was a little apprehensive and really scared. With reason. They're not sure how they're going to react. How am I
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supposed to react? What am I supposed to do in this situation? There's not a lot of textbooks, not a lot of people to say, "Well, here's what you do." I comforted Brenda, and I said, "Are you sure you can do this?" She said, "I have to do it now, I'm committed, I'm here," and she pulled herself together; and Linda got herself together We got in there, and once everybody calmed down this real strange calmness came over everybody, and we were very quiet and really dignified. We took the sheet off her; and she was lying there completely naked. I could see the holes in her wrist from where the arterial lines were, and the holes at the back of her hand where the IV lines were, and on her neck where there was an IV line I had a good look over her; to make sure she was all right. And it was just like this automatic pilot thing. It was a job we needed to do, and everybody did it willingly. We just went about the job of getting her ready. It was like dressing her for school or dressing her like she's going away. It was kind of not to be sentimental or cliche-ish but it was getting her ready to go. And we did it with great love, great care, great respect, and great dignity. It was just one of the most profoundly spiritual and touching moments of my life. I'd recommend it to absolutely anybody. It was up there with the birth of children, with that miracle of being alive, that miracle of holding Jesse when she was about eighty-five seconds old, and holding Claire when she was about forty-five seconds old. And we all felt it. We talked about it afterwards, and everybody in the room felt the same thing this deep connection to each other and just this profound connection to her Her spirit, not her body. It wasn't the body....
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John and Brenda are a quiet, somewhat reserved couple. They both worked John as an RN (prior to this, for many years he was a professional musician), Brenda as a library technician and their leisure time was centred primarily on their home and their children. They enjoyed socializing with friends and family, but essentially they were private people. It came as a surprise, even a shock, therefore, to see such an overwhelming response to Claire's death from so many people. The first of three visitations took place at the funeral home just a few hours after they'd finished dressing Claire. That evening, and again Thursday afternoon and evening, there was a virtually uninterrupted stream of people. As they entered the little room, each person was greeted by either John or Brenda or Jesse and invited to sign a guest book. Two walls were filled with photographs and picture boards that Jesse had put together. Much of the display was devoted to Claire's artwork cats, ladybugs, butterflies, each of them in bright, bold, primary colours, looking playful and happy. Jesse also took it upon herself to prepare a memory book, which had more pictures and artwork, along with samples of Claire's poetry and stories. The memory book was mounted on a table near the centre of the room, surrounded by cards and bouquets of flowers. The wall to the left of the entrance was also lined with flowers, dozens of arrangements that were set out on tables and along the floor on each side of the casket. As one group entered the room, others made their way
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out. The visitors came in, signed the guest book, then made their way counterclockwise around the room toward Claire; there they were greeted by at least one family member. Some remained, offering comfort to the family; others left quietly after just a few moments, unsure of what to say, how to act. "People were so shocked," said Brenda. "Even at that time, I remember sharing that with people, that she shouldn't have died. Because people had the same expectation - that she was going to have the surgery, she'd be home for a few weeks, she would be okay, and she would be back at school. They were totally shocked by it. And I think it was even more shocking for them to hear that it shouldn't have happened. They just didn't know how to respond to that. Some people still don't." Among the first groups to visit were Claire's grade five classmates, from Ecole Norwood Park, a French immersion elementary school that Claire and her sister had both attended since kindergarten. Students from other grades also came, including most of Jesse's friends, along with several of the teachers and administrators. It was perhaps hardest on the young ones. They'd been told what had happened to Claire, they understood conceptually what death was, but they were unprepared for what they were about to see with their own eyes. As they made their way inside, their manner was light, disaffected; they looked more curious than distraught. When they went out, they walked slowly, solemnly. Some were sullen, downcast; others looked frightened, confused. All of them were saddened and upset. All of them left behind at least a part of their innocence.
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John and Brenda were especially moved when many of the staff from the General Hospital came to pay their respects. On the other hand, their visit only made the staff from McMaster look all the more conspicuous in their absence. "Every nurse from the General showed up at the funeral home," John said. "From the OR nurses to the postrecovery care nurses, the nurses who took Claire in when she first got there every single one of them. Not one person from McMaster set foot in there. Not one surgeon, not one attending, not one nurse, not one social worker, no one. Nothing. That speaks volumes to me."
On Thursday, October 18th, John finished his letter and sent it to the College of Nurses of Ontario, the agency responsible for the certification and governance of the province's 139,000 nurses. The letter constituted a formal complaint against the three icu nurses who were on duty during the weekend of Claire's death. As a registered nurse and a member of the College, John understood the process that would be initiated. There would be a review of Claire's case, followed by an internal disciplinary hearing before a three-person panel. The consequences ranged from dismissal of the allegations to a suspension of the nurse's certification and, in extreme cases, criminal charges. That, John thought, would come as it may. Whatever the procedures or their outcome, he was thinking only about his immediate objective: He wanted to ensure that
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Claire's case would be investigated independently. He wanted to send a message to the nurses so that they would see that he was already looking for answers about their conduct. He knew that the College would be notifying Hamilton Health Sciences of his complaint, so he felt assured of gaining the attention of senior management. And in the end, he also wrote the letter for himself. "She died the 14*; I had complaints into the College dated the i8th. I guess a smarter person would have waited, but it just brought so much more validity, and I needed to do it. I needed to write 'You killed my child.' I needed to say this."
The cremation was scheduled for nine o'clock on Friday morning at Bayview Cemetery, in nearby Burlington. A small group of immediate family members gathered at the crematorium. After a brief prayer, John and Brenda walked with Claire to the entrance of the crematory. "We walked her to the furnace door," John said, "and when they placed her into the furnace we walked her right to that point. The guys there didn't know what to do or say. I didn't expect anything from them they were just working there, just doing their job, and we were doing our job. We walked her right to the back end of the catacombs, down the hallways and through all the hollowness and dirty industrial awfulness of it all, all dressed up in suits and dresses. . . . This is part of the job, and part of our duty, to see her off to the absolute 'This is it. We can't do any more for her.' And I'm
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A P R O F O U N D SENSE OF DUTY
glad I did it. I don't know how I'd feel if I hadn't. . . . " It was only then that Jesse felt the full impact of Claire's death. "None of it seemed real to me," she said. "I think it hit me then, because even when her body was in the funeral home I don't know, it sounds weird, because I was thirteen but it was like she was still there. It was like it was a play or something, that's what it felt like to me, like I was just dreaming, and I was going to wake up soon. And I realized once she got cremated that it wasn't, that it was real."
Bill and Linda Frid waited behind at the cemetery; they were going to bring Claire's ashes back to the church for the funeral service. The Lewis family spent the rest of the morning back at home. At one point, John went into the living room and sorted through the CDS, looking for Sarah McLachlan. They'd chosen her song "Angel," a favourite of Claire's, to play at the service. "I have an image of her," John said. "She used to sit in the living room, in front of the speakers, singing along with 'Angel.'"
Jesse was off with her cousin, and Brenda and I were here alone it was about the first time all week we'd been alone, it was nice, actually and I was checking the CD to make sure what number it was, so I could tell the operator person. And I played it, and.... And we stood in the living room, and we danced and we cried. It was a low point, but a high point, of the week. Alone in the house, finally, after just being bombarded with people for
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BEWARE THE G R I E V I N G WARRIOR.
the whole week. It was a sunny morning, I think, and we played it, and we danced and cried the entire tune.
you're in the arms of the angel may you find some comfort there you're in the arms of the angel may you find some comfort here
More than five hundred people attended the service. It was held at the First Unitarian Church of Hamilton, under the direction of Reverend Allison Barrett and her assistant, Keith Jewell. Reverend Barrett agreed to deliver John's eulogy. In it, John celebrated Claire's life, her spirit, and, especially, her boundless generosity toward others:
One of many things Claire really excelled at was loving; loving unashamedly, unselfishly, and uncompromisingly. Loving with reckless abandon, not only wearing her heart on her sleeve, but also willingly giving that heart to whoever was in need of her love.This love extended to all of God's creatures, crawling, walking, flying, or climbing on this paradise we call Earth.This love of hers has acted like ripples on a pond, encircling more and more as the ripples got bigger; drawing more and more into the community of ripples, the community around us.
John lamented the loss felt not only by her family and friends but also by those who had not met Claire, "those in
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A PROFOUND SENSE OF DUTY"
the world who would not benefit from her life to come." Yet even through such a tragic loss as this, something can be gained. He wrote about the organ transplants, how Claire was to affect the lives of people neither she nor her parents even knew. Even in death, as in life, John wrote, Claire was able to share the most precious gift of all. The eulogy concluded with a poem that John had written for their dinner party the night before Claire went into the hospital. Clocks tick, hearts beat Tears fall Holding my breath waiting . . . Waiting for the metamorphosis. Chrysalis cracks, she emerges Wings poised, ready for f l i g h t , . .
When it was all over, it was time to go back home. After all the commotion, and the busyness of all the people around them, Jesse told me, the house suddenly felt very empty.
I never saw my parents around my house for like two weeks. I'd be going out places, and they'd be going out places, and we didn't talk, All of our family was staying over at our place, so I'd go with my cousin everywhere. She's around the same age as me, so she was like my closest teenager I could talk to, instead of grown-ups. And the family, everyone left, and then the next day 1 set the table for dinner, and I kept trying to set four plates. It sounds weird, but
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it was kind of like hard to take in, that there was only three dinner plates, not four
On a Friday afternoon just one week earlier, John and Brenda sat outside the operating room, waiting to see Claire and to hear that she was all right. A day later they remained at her bedside, talking, visiting, nurturing her. A day after that Claire was gone there, but not there, with machines breathing for her. Confronted with the horrific loss of their daughter, John and Brenda were at once deluged with decisions, responsibilities, questions all of them painful and heartbreaking, unexpected and unavoidable all part of what John calls "living the unimaginable." But they found a way to carry on. What had to be done was done. In the midst of their tragedy, Claire's family found strength and certitude, not in spite of their grief but because of it. It was all for Claire, John told me everything they did that week and all they were about to do. It was all on Claire's behalf and in her honour.
It was the right thing to do. It was intuition, just pure intuition. Intuition said do this, and we did it just recklessly followed our intuition. And we don't, in our day-to-day lives. We're taught to live life as it's supposed to be, not as it is. All of us. We're taught life is supposed to be this, and you're just supposed to live it like this and anything outside of that, is outside of the norm. Instead of living life as it is. And life as it is, it's your child is dead, and you're going to dress hen and you're going to write the eulogy, and you're going to see her off, and then you're going to go after the people who killed her . . .
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câ^f
%>'' Mi-l^vC'
M\ji 1 i~ r H 4 _ >O"j C
s an employee of the Ontario government, Brenda was ntitled to a maximum paid leave of absence of five days. Technically, she was due back at her desk on Monday morning, one working day after Claire's funeral. Her supervisor told her at the funeral service not to worry about it, that she should take as much time as she needed, but she called Brenda just over a week later to ask when she expected to be coming back. Perhaps working again would "help," her supervisor suggested. "I told her I did not feel at all able to return to work so soon," Brenda explained. The only way she could remain off work was to use up her remaining vacation time and accumulated sick leave. That, she and John calculated, would take her to the end of December. John's situation was even less flexible: As a permanent part-time employee, John was not eligible for any bereavement leave at all. Furthermore, after the shock and trauma of Claire's death, he was neither willing nor able to return to nursing, at least not to direct, bedside patient care. His
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family doctor provided documentation to this effect, after which his employer, Hamilton Health Sciences, indicated that it would try to place him elsewhere in the organization. Nothing came of this, and consequently he remained unemployed, working sporadically, for the next several months but even if the hospital had found something to offer him, it's unlikely that John would have, or could have, accepted it. "Advocating for Claire," he said. "That was my one and only job, I thought. There was nothing else I could have done." In fact, John's advocacy was well under way. It had been set in motion the day before Claire's funeral, when John had sent his formal complaint to the College of Nurses of Ontario. In his letter to the College, he gave a detailed account of a series of incidents followed by a list of specific questions. Concerning the events of Saturday morning, he wanted to know, if he and Brenda had not been there, how long Claire might have continued to seize before she was noticed by the nurse. He wanted to know when or if calls went out to the attending physician or resident, alerting either of them to the presenting behaviours petite-mals, decreased focal ability, decreased level of consciousnessthat preceded her seizure. At what point in the chart did the nurse note these signs and symptoms? And if there were no such notes, why not? John's description of the events of Sunday evening was more detailed, and his questions were more pointed. When did the call go out to the resident regarding Claire's dangerously low sodium level? When did the call go out to the resident regarding concerns over her decreased level of con-
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sciousness and periods of apnea? When did the nurse indicate in her notes the first occurrence of these symptoms? Was the child not still in a one-to-one nursing situation at the time? Or did the nurse's assignment include other patients? If so, who was responsible for these assignments? Who decided, "considering she was less than 48 hours post-op following an 8-hour procedure for a brain tumour," that Claire was suddenly not "critical" enough? A week later, on October 2,6th, John wrote to Dr. Richard Porter, the local coroner who'd called him after Claire's autopsy. "My intention of this brief report is two-fold. My wife, daughter and I are deserving of answers as to why this beautiful child of ours is dead; I am willing to assist in any way to that end. Secondly, if there were errors committed, human or systemic in nature, these need to be addressed to prevent a similar disaster occurring again in the future." He advised the coroner of his submission to the College of Nurses of Ontario and briefly restated his summation of the events of October 13* and 14*; even in this, John reiterated that his sole motivation was to seek out the truth, and the tone of the letter remained professional and courteous. "I have many questions and concerns surrounding the last few hours of Claire's life. Hopefully, some of these questions and concerns will be addressed during the course of your investigation and that of the CNO. If I can be of further assistance in any way, please do not hesitate to contact me." Dr. Porter did not reply, nor was John expecting him to; his objective, primarily, was to have the letter on file with still another institution independent of the hospital. Mission accomplished: His summary
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of events and his "questions and concerns" about the circumstances surrounding them would now be a matter of record with an agency of the Crown. A week later, however, John decided to take his case a step further. He and Brencla drove to St. Catharines, about forty minutes southeast of Hamilton, to pay a visit to the regional coroner. They wanted his assurance that there would in fact be an investigation and that they would be kept fully informed of any developments. The regional coroner, Dr. Richard Eden, looked nervous, uncomfortable. Throughout their brief conversation, John recalls, Dr. Eden remained steadfastly noncommittal. "The first thing out of his mouth was 'Well, I don't see any basis for human error here.' Well, what the hell is that? How would they know three weeks after she died? They haven't done an investigation. They haven't done anything." Dr. Eden did confirm that a coroner's investigation would be forthcoming; he also told them that Claire's case was going to be reviewed by a Pediatric Death Review Committee. John took this as another clear indication of the gravity of the situation: PDRC cases are assigned by the Chief Coroner's office, which meant that Claire's case had already reached the highest level within the provincial judiciary system. John and Brenda were pleased to see that the case was being taken this seriously, but John also knew that the process would likely be long and slow. In the meantime, he would press ahead with his own investigation. Immediately following Claire's death, he had submitted a written request to the hospital for copies of Claire's medical record, the obvious and
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most important source of concrete, detailed information. He received word in early November that the copies had been prepared, and he went to the hospital to pick them up in person. Expecting the chart to shed light on many unanswered questions, John couldn't wait to get home to read it. He couldn't wait, in fact, to get back to his car. He stopped in the hallway, knelt down to the floor, and started reading. "It was unbound, it was just loose pages, and I had pages spread out on the floor. People were stepping around me, looking at me like I'm insane." The chart is a massive compilation more than two hundred pages of records, flow charts, and handwritten entries by the nurses and doctors but almost instantly John found what he was looking for. He went straight to Claire's chart for Sunday, October 14*, which itemized the events and circumstances of her final hours. Moments later he had the first of many revelations: The decline in sodium level was even more drastic than he'd suspected. From 138 at noon hour, it had fallen catastrophically and, evidently, unnoticed to 124, less than seven hours later. "I looked at that, and I went 'I knew it.'" Hours later, back at his desk at home, John spent the rest of the day and most of the evening reading through the documents, and on the basis of that initial run-through he found enough evidence to substantiate what he regarded as gross negligence on the part of the physicians. His next letter, written just days later, was a formal complaint to the Ontario College of Physicians and Surgeons. Like his letter to the College of Nurses, this one drew from first-hand observations
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and his professional perspective, but it also made several pointed references to Claire's chart, calling several of its statements into question. John's first concern was centred on the efforts that were made, reportedly, to save Claire as she began to crash: "The discharge summary gives one the impression that extraordinary measures were taken to preserve this child's life, when in fact the interventions mentioned must have been carried out post brain death. From my observations, as a registered nurse, very little was done as this child deteriorated before my eyes." This issue, also raised in his complaint against the nurses, pointed to a far more serious question: In all that time, from early afternoon through to early evening, where were Claire's doctors? "No physician saw this child until at least 1900, at which point the child was unresponsive, having gone past the obvious stages of increased ICP: restlessness, lethargy, and decreasing responsiveness, all observed by myself and reported by myself to the attending nurse. . . . [In the discharge summary, the attending physician] writes that 'the patient developed rapidly decreased level of consciousness with decerebrate posturing and apnea as well as possible seizure' without having laid eyes on this child until well after she crashed. I reported the signs and symptoms of an impending disaster to the attending nurse, who I assume passed on this information to the responsible physician." Finally, John addressed the overall lack of high-level monitoring and observation that would be considered appropriate, if not fundamental, in the day-to-day operations of a specialized pediatric intensive care unit: "Why was
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no action taken in an icu setting considering this child was just 48 hours post-op and in serious difficulty? Action earlier in the event might have taken place had there not been an attitude of what appeared to be complacency and what I consider, from a professional perspective, lack of concern for this child's medical condition. How does a sodium level fall from 13 8 to 124 in a matter of hours and no one in a critical area notices signs/symptoms of this event taking place? I have worked on an acute surgical floor, and I am aware of how quickly a patient's condition can change, and how quickly action needs to be taken to correct problems." This letter, dated November nth, 2001, would trigger the fourth major initiative set in motion by John since Claire's death, fewer than thirty days earlier: Claire's case would be reviewed by the College of Nurses of Ontario, by the regional coroner's office, through a Pediatric Death Review Committee (by way of the Chief Coroner's office), and now by the Ontario College of Physicians and Surgeons. And in the meantime, John's own research, which would prove to be a pivotal factor in the outcomes of all of the aforementioned official investigations, had barely even started. Claire's medical records confirmed much of what John knew, and what he suspected, but the chart also pointed to what he did not know: He was convinced that the sharp drop in Claire's sodium level was the single most important factor in her death, but he did not understand enough about what might have caused it to fall. Even as he drove home from the hospital, with Claire's chart at his side, stuffed into a big envelope, his research plan was clearly established.
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The starting point was to determine any link between Claire's steadily plummeting sodium level and the drugs Claire was being given as part of her fluid regimen. John was aware that the coroner, immediately after Claire's autopsy, had alerted the hospital regarding the use of the iv solution. He also knew, based on Claire's chart entries, that on the day Claire crashed she had been given a drug called DDAVP on three occasions that afternoon at one, three, and five o'clock and then once again at eight. DDAVP is an antidiuretic, used most commonly in the treatment of diabetes insipidus. This condition, which is unrelated to diabetes mellitus (sugar diabetes), occurs when the pituitary gland is no longer able to produce enough antidiuretic hormone (ADM). During neurosurgical procedures such as Claire's, the pituitary gland is often damaged or destroyed. One of the first symptoms of diabetes insipidus is excessive urination, and the standard treatment is to administer DDAVP, which, serving as a replacement for the body's ADH, will limit water output. Claire's tumour was located directly adjacent to her pituitary gland. The possibility of diabetes insipidus had been explained to the Lewis family during an orientation meeting. "It was mentioned once at the pre-op clinic, as a potential, after surgery," John explained. "I looked into it, a tiny bit, because it's not a big deal. There are lots of people who live with diabetes insipidus the rest of their lives. Kids have these tumours removed as teenagers and young kids, and they live pretty much normal lives."
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CONNECTING THE DOTS
What, then, was the problem? John recalled that Claire had been given DDAVP late on Friday night, just after she'd been transferred from the General, then again on Saturday evening. Had it been prescribed to correct her fluid balance? Why, then, were there no notes to this effect? What were the orders? Who wrote them? And what happened on Sunday afternoon had something changed? Was something done, or not done, that worked against Claire? And so it began: John's research agenda was set.
My knowledge level was pretty minimal on the drug DDAVP and minimal on a diagnosis of diabetes insipidus. They're not normal diagnoses in the course of care, unless you work in neurosurgery. You wouldn't see those sorts of diagnoses on a medical floor; or an oncology floor; which is where I worked, not unless you're dealing with a patient with brain tumours. So I knew I needed to learn about diabetes insipidus and DDAVP, And then, knowing that, it was a matter of going back into the chart and plugging in who did what, where, that resulted in the events that led to her death.
It was one of those ironic twists of fate that led John Lewis to give up his career as a musician (he was a professional guitarist for twenty-five years) and choose instead to pursue nursing. His new path led to new skills and talents, not only in nursing but as a medical researcher, that would be crucial to his ability to find out what had happened to his daughter.
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John worked as a nurse for a year and a half before Claire died, but by this time he'd already established an impressive track record. He earned his nursing diploma in 2000 at Hamilton's Mohawk College. During that time, he was also enrolled as a part-time student at McMaster University, where he worked toward a bachelor of science degree in nursing. When John graduated from Mohawk, he'd made the Dean's Honour List three years in a row and earned two notable awards: the Gladys Irene Daniels Memorial Award ("most compassionate nursing care in third year graduating class") and the Elizabeth Maus Award ("for excellent nursing skills combined with application of theoretical principles"). Shortly after leaving Mohawk, he worked at the hematology/oncology ward at Henderson General Hospital, another of the three major facilities of Hamilton Health Sciences. In 2,001, John returned to Mohawk College, this time to become a part-time instructor, teaching first- and second-year nursing students. In the same year, at McMaster University, he became one of only three university students in Canada to receive the Canadian Nurses Foundation Award "for excellence in Baccalaureate Studies." John worked from his home office, and to a lesser extent, between classes, at McMaster University's medical library, scanning through the medical databases (available to students, faculty, and academic researchers with an access code number) through various universities and medical institutions. Once he identified a research paper that looked relevant, he would order it through the library and take it home. Occasionally he had to pay for them, but most papers
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were available free of charge. "It was textbooks, but mostly it was on-line resources, especially journal articles. That's the big one, because journal articles are A-i evidence. They're the best evidence you can get. They're the most recent, generally, the most up to date," The process was straightforward, but by no means simple, and it wasn't something a layperson could do. "Not without the databases," John offers, "and not without knowing search terms and knowing what you're looking for. I mean, if you put 'diabetes insipidus' into a database engine like Pub Med, that anybody can get into, you'd probably get 22,5,000 links and who could possibly go through that? Even two thousand papers. And within those, what are you looking for? No, I think searching, particularly medical searching, is a specialized field. And having the databases, and having access to them, and on top of that access to a library that even carries such specialized journal articles. How many people could walk into a medical library like McMaster has, with something like five million titles (plus there's another couple million electronically captured), and find a journal article three pages long? It's overwhelming." John worked for weeks at a time, finding new articles, studying them, cross-checking new information against what he had in Claire's records. He assimilated new knowledge and principles, gained new insights and understanding. Despite the growing volume and complexity of documents, computer files, and correspondence he was amassing, he remained undaunted. He was driven by Claire. She kept him going. It was also because of Claire that, so many times, he had to stop.
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I had to take breaks from it too. It was something that had to be put down and put away, because it was just too much. I'd look at it it says "Lewis, Claire." Yeah...." 105 Alpine Avenue." Yep.... And the DNR order "do not resuscitate." You're constantly looking at this and- realizing . . . this isn't a bunch of facts and figures this is her, you know? So there were breaks, away from it.
The reminders of Claire's presence, and her absence, were constant and painful. Now there would be still more pain and more anger. It came from what John was learning, beginning to see. "The more I learned, the angrier I got. And the sadder I got, when I realized how preventable this death was." Excessive urination is usually the most obvious sign of diabetes insipidus, but it isn't the only symptom. In and of itself, excessive urination doesn't necessarily indicate diabetes insipidus. Rather, diabetes insipidus is diagnosed on the basis of three interrelated factors: urine osmolality (its concentration), urine output (measured quantity), and serum sodium (sodium level in the blood). "In diabetes insipidus," John explained, "your kidneys can't concentrate urine, so you pass voluminous amounts of really dilute watery urine. And as you do, you're losing water from your body, so, proportionately, your sodium goes up."
Diabetes insipidus is simply mathematics and managing it. As the serum sodium goes up, the urine osmolality falls, and you give DDAVP. Because you're peeing out water, the serum sodium goes up; you give DDAVP to hold on to the waten and that brings the
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sodium proportion back down That's it. Conversely, as the sodium falls, the urine osmolality goes up, so you restrict fluids, and they'll balance out It's that simple. But you have to measure the falling sodium, and measure the urine, and they didn't do it. And it is really that simple. You do it every two hours, and, if you see the urine osmolality falling and the serum sodium going up, you give ' DDAVP at the smallest dose possible, to see if the urine osmolality comes up again. When it goes up over three hundred, you've got the proper dose.That's it That's all you need to know to have taken care of this kid.
On the day of Claire's crash, her chart shows that Claire was releasing very high amounts of urine, but it also indicates that she was highly overloaded with fluids. Where was all that fluid coming from? John's conclusion and, in his opinion, the most basic and logical one was that she would have received it during her surgery. "In any surgery where there's a general anesthetic, you're going to get fluids, for blood pressure support. When you're intubated, the anesthetics really drop your blood pressure, so you're given a whole bunch of fluid, to keep the blood pressure up, keep your kidneys working, while they're slicing and dicing. And there's blood loss, and you need to replace that, and you replace it with fluid. Your body will make new blood, it's no big deal at all" Claire's operative records would indicate the exact fluid intake levels, and her post-op chart would have tracked her fluid balance on an hourly basis. But when John went to check the data, he discovered a problem: Claire's records went back
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only to late Friday night, from the time Claire was moved from the Hamilton General to McMaster. John didn't have any earlier records because they simply hadn't been sent with her when she'd been transferred. John was stunned by the prospect of such a blatant oversight and horrified by its implications. It took two weeks for him to obtain copies from the General and, once he had them, less than an hour to confirm his worst suspicions. Vital information had been mishandled, and as a consequence serious oversights had gone unnoticed. And at McMaster, things only got worse. The most basic monitoring practices, which would have alerted staff and prompted the necessary actions, simply did not happen. As John returned to the McMaster chart, retracing Claire's flow charts, watching the now obvious telltale signs of the impending tragedy of Sunday evening, his heart sank.
Her sodium was fine. She was peeing a lot, but they didn't measure to see that the urine osmolality was well over three hundred. She was getting rid of her post-op fluids, the peri-operative fluids. She got four thousand c.c.s of fluid; that's four litres, which is four kilograms of fluid, and that was to support blood pressure. She only weighs thirty-eight kilograms so it has to come out at some time, you know? She was so full of fluid her fingers looked like sausages. By Sunday, she was fluid overloaded by almost three litres. They didn't know this because they left the records at the General. Not only is the [diabetes insipidus] condition not there, they didn't measure, for itThey didn't do the proper serum sodium and the proper urine measurements.They just didn't do it
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The answers seemed all too clear, almost too simple, and too astonishingly preposterous to be true: At a time when Claire was still heavily overloaded with fluids, she was given a drug that prevented their release. The correct diagnosis was not diabetes insipidus but rather "syndrome of inappropriate antidiuretic hormone" (SIADH). The appropriate treatment would have been a diuretic, such as Mannitol, which would have helped flush out the excess fluid. Instead, the DDAVP retained it. All through the day, as her iv solution continued one part saline, two parts free water her fluid level slowly rose. All through the day, her sodium concentration fell: from 138 at noon to 124 at six o'clock. At nine, it fell to 120; she was given Mannitol, but it was already too late. Claire was unconscious. She had succumbed to hyponatraemia, the result of her low sodium, which was in turn caused by her fluid overload. Post-operatively, because of the peri-operative fluids, it is common to see a patient's hands and feet badly swollen, like Claire's were. But this was a neurosurgery, in a young child, and the risks and consequences were far different, far graver. The excess fluids built up not only in Claire's fingers and toes but in her brain cells, and when these cells began to swell there was nowhere for them to move but downward, toward her brainstem. The blood supply to her brain was choked off. Soon it could no longer control any of her bodily functions, including breathing, and even though Claire was resuscitated, and breathing again through a ventilator, her brain was no longer working. It had been asphyxiated, drowned, and it couldn't be brought back to life.
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John discovered more errors. As he continued to analyze each detail of the medical records, he seemed to find something new at each turn. It all began to look like a steady downward spiral that began not on Sunday afternoon but almost from the moment Claire left the General two nights earlier. Just after her arrival at McMaster, she was given five micrograms of DDAVP far too high a dosage, particularly so soon after surgery, and especially so for a young child. From that point on, all through the night and into the morning, Claire's sodium dropped steadily, from 138 just after midnight to 129 by n a.m., when Claire suffered a seizure. The sequence of events on Saturday was almost identical to what happened on Sunday: She was given the wrong treatment, based on an incorrect diagnosis; the increasingly alarming symptoms her blood, her urine, her behaviour went unnoticed. "They almost killed her on Saturday and didn't even realize it," John lamented. "It was a dress rehearsal for Sunday. They turned around the next day and did the same thing, and absolutely no one saw it." John found still another incident involving DDAVP, one that, ironically, was an appropriate call. On Saturday evening, Claire was releasing excessive amounts of urine; this time her urine osmolality fell, and her sodium rose sharply. "They gave her two micrograms, and it was completely appropriate, because her urine output was eight, nine hundred c.c.s an hour, urine osrnolality was seventy, well below a hundred, which is total evidence for diabetes insipidus. And you want to get on it quickly, so the serum sodium doesn't go through the roof, because then you spend days trying to get it
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back down again. It was an appropriate course of care, and she did a great job, actually, the resident for Saturday." Claire's fluid balance was restored within hours, and might well have remained intact, but then on Sunday morning there were more oversights and more errors. Before leaving, the resident cancelled the DDAVP order and, evidently (based on what John saw in the chart), did not write a new one. The resident taking over from her working, presumably, with incomplete or inaccurate information wrote the new order that once again led to fluid overload. "Nine fifty-five in the morning. It gets copied into the chart at 10:30. 'If urine output greater than 160 c.c.s an hour for two hours, give DDAVP, two micrograms iv.' What he meant was one dose^ but he didn't notate that." The downward spiral was again in motion: At the same time the DDAVP was continued, the monitoring of Claire's blood work was reduced from four hours to every six. "That's now every six hours they're going to look at her blood. Had it been four hours, she'd be alive. Had they done it at four o'clock in the afternoon, they would have seen her sodium in her boots and stopped this crap, stopped the fluid replacement, got some Mannitol in her, and she would have been fine." John had to turn away from the appalling facts and figures that screamed out at him. Their message was so clear and so horrific that he couldn't bear to see them. But he couldn't stop now. He decided to step back from Claire's case. Perhaps he would gain something from other examples, from another vantage point, a different perspective. He looked for case studies, historical precedents; he took in more
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facts and figures. None of these gave him solace either. It only made Claire's case, the care and treatment that Claire had received, look worse. One study John found, a ten-year retrospective on craniopharyngiomas performed at Toronto's Hospital for Sick Children, was particularly jarring.
Sick Kids has been doing it for over ten years, with no deaths in the post-operative period. They take kids in, they take the tumours out, put 'em in the IGU, twenty-four hours later they're on a floor; and in two weeks they're home. Or less Huge incisions, ear to ear; you know? Big tumours taken out of little babies, teenagers, you name it.Ten years and not one single death. This surgery has been taking place for over forty years, in children and adults. It goes back to the '60s, when those guys were opening up skulls with their eyeglasses they didn't have microscopes. They probably didn't have a magnifying glass. And they're in there slicing and dicing tumours, and these kids are fine.These are slam-dunks. DDAVP has been around for over forty years. It's an old drug; it's used from Japan to Australia to Germany the entire planet uses the drug. It's not complicated medicine, folks. All. the drug books will list the drug, what it's used for, dosage, and then side effects. And one of the first side effects is profound' hyponatraemia, which is decreased sodium,which is ....hello? Gee,where did that come from? I look at the drug, and I see "profound hyponatraemia, use caution, use cautiously in children, measure serum sodium regularly... ."Those words keep coming up. This is not complicated medicine. Which really worries me. If this
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DOTS
\s not complicated, and you screw this up, what are you doing with the really tough cases out there? It just became so blatantly obvious. "You senselessly slaughtered my child in your ICU.That's what happened, folks. Call it all sorts of euphemisms adverse event, critical event, sentinel event No. It was the slaughter of an innocent child.'That's, for me, what it gets down to, ,once I finish the research and I clearly understand what they did and how simple this is to manage. You could teach a high school teacher how to do this.
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Thad discovered through his research, the more I wondered how this family had survived. Many don't. Families break down, careers are ruined, people's health people's lives are destroyed. "How did you guys do it, John?" I asked. He took a deep breath and let out a long, slow sigh; it was a gesture that I had seen many times over the course of our talks. He would shake his head, sometimes with a sardonic little laugh, and then he would sigh. "I don't know how anybody gets through it," he answered quietly. "I haven't got a clue. I've talked to other parents, and I don't know how they do it. But I know it was and still is some days an everysecond-per-day obsession with this kid's death. It was 86,400 seconds per day she didn't leave your mind."
We were both off work, and that winter was wet and cold, it didn't snow much that winter It rained almost every day, so we
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he more I heard about what had happened, what John
6
9
walked. We walked from here to Upper Ottawa Street [about three kilometres] in sleet, hail, rain, it didn't matter; we walked. Every day. Umbrellas blowing inside out, covered in ice pellets, and we walked and walked and walked. And when the weather got warmer; we drove. We'd drop Jesse off at school, get in the car; buy a coffee somewhere, and just speechless, wordless-just drive. It was just a bizarre thing.... And we'd do that five days a week, just find ourselves somewhere; suddenly it's lunchtime, and we'd have some lunch and then drive .some more.... We did talk a bit, but mostly it was just driving the fields and trees and emptiness: and the road. Back.roads, all around Lake Erie and Lake Ontario, two-lane highways school. Just too restless to stay in the house. We'd gotten.some help, I guess, from counselling things, but at the end of the day there's . . . you're still left with this death, you know? And there's books and all kinds of literature on grieving, and ... at the end of the day it all means nothing. Ninety-nine percent of it is common-sense suggestions. And most of it, I thought it was just nonsense. "Do this, do that" well, you're already doing this and doing that... But anger can drive you too. And I think that's what a lot of the research, and a lot of the going after them, was all about. It was a place to put my anger Because it'd be too easy to turn it inward, it'd be too easy to subject everyone around you, too easy to subject the medical profession at large. Anger can be a good motivator, and a good driver; and I think that's what drove me so hard. So between walking and driving, I was writing writing in a journal, reading a chart, writing a letter; writing an e-mail. It was .like a full-time job
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We'd just drive
and drive. And then we'd go back home and pick Jesse up from
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. THROUGH A LONG DARK SILENCE
It became John's routine, his daily ritual, a way to keep going when there seemed to be no reason to believe they could endure. Neither John nor Brenda slept more than three hours at a time, despite their medication, despite the strains of just getting through another day. During the long, sleepless nights, John spent most of his time at the computer, doing his web searches, studying, reading. And when he couldn't read anymore, he would write. He would open a new page and just ramble on, letting his thoughts take him where they may. It got to be a habit. It got to be cathartic. It helped him confront his demons pain, anger, grief, guilt, hopelessness, heartbreak. It helped him survive the worst weeks and months of his life.
Words, just spoken words, filling the empty space of the distance that exists between us. Desperate creatures, these grief-stricken human beings groping for words, searching for the language of the moment, trying to express the horror, the pain, the unimaginable, at the death of a child a perfect, innocent, beautiful, loving child. I.have found no language for this moment,in my life, no adjectives to describe this grief process/journey. I have found no "road map," no directions, no recipe toward some sort of "recovery." Life is forever changed from the moment of death forward; things won't and can't remain the same. I have no advice, no tips on reducing the pain, no shortcuts to feeling "normal" again. I believe this process/journey is highly individual; there is no one size fits all. I think after time I found the language of this experience dwelled, in my tears, those gut-wrenching, indescribably longing moments when all I can do is cry and cry for the loss of this child. The language of the heart becomes sobs, shrieks, tears, and more
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tears. (I became fearful that I would start crying and not stop.) Eventually, I would slowly stop the outburst of crying, but not without my wife and daughter; without their support and love, I would not have survived this child's death. No words needed to pass between us; the language of this pain and grief became our collective tears. We did not need to explain the reason for the outburst. We did not need to talk; we merely needed to breathe, hold each other; feel with our hearts, and listen to the language of the tears.
The unimaginable lurks around every corner Claire is everywhere I turn, it seems. Something as simple as grocery shopping turns into a grief-stricken nightmare, seeing her down every aisle, picking out her favourite food, finding myself shopping for four when in reality we are now three. Dropping our older daughter off at the school that both children went to was a painful, daily reminder of the unimaginable; seeing her friends at play on the same playground she played on not long ago, her classmates' artwork on the walls at school, minus Claire's, her classroom, her empty desk. There seems to be no escape from the relentless reminders. There seems to be no respite from thinking of her Even when "busy" and involved in something, devoting my full attention to a task, she lurks in my peripheral memory, ever present, ever reminding me that the unimaginable has happened, that my eleven-and-a-half-year-old little girl is dead. Throughout, it all, there is stillness to life, certainly stillness, in the sense that things are indeed quieter without Claire; there is a new silence. But this stillness is more about standing still as the
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world goes on around you.Time came to a grinding, crashing halt when she died and has yet to resume. I guess that's why I feel it's so important to take this time away from the world now, to give us time to catch our breath. Time also to adapt to.the new "normal" as our lives are forever changed with this life-shattering event We are a new family. Where we were four; we are now three; the old rules do not apply much anymore. This stillness, this standing still, makes a future very hard to fathom. Where there was once a clear road, a concise plan involving our collective future, there now lie doubt and fear The doubts stem from my inability to move past this event, past this death of Claire. I remember during the first week after she died feeling guilty when eating, thinking to myself, I get to eat, she's dead. I still feel guilty about planning out the new future, as if I'm leaving her behind, abandoning her for my plans, somehow showing disrespect for moving on with my ife without her The pain comes from nowhere, ambushing me in stores, while driving, while daydreaming, while reading, while being preoccupied by nothing to do with hen Out of nowhere comes a crushing, crashing wave, leaving me powerless to stop it This pain is sometimes subtle, yet unrelenting, always lurking just below all I do, all I say all I think, all 1 feel. Guilt gets messed up with a sense of being a profound fai ure; how do those who feel like failures ever plan a future? We as parents (particularly fathers) believe we are the protectors of our children. We keep them safe, we guide them, advise them, discipline them, hoping all along at some point they might actually listen to us. We live our lives trying to do what's best for them, trying to provide the best future we can for them, to prepare them for the best future they can create someday on their own.
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When this same child dies, a future goes with them.Time stops. I failed somewhere to protect this child/or else why is she dead? What did I do, could I have done, should I have done, to prevent anything happening to her? Where did I fail her? These are not rational thoughts; these are desperate feelings very real, very deep, very disturbing feelings. I failed to protect my eleven-yearold baby girl, and now she's dead; I failed her in some way. We work so hard to raise our children the best we.can, dedicating time, love, a commitment above and beyond the call, willingly putting our selfish hopes and dreams aside. Even our lives are put on hold out of sheer love for these children of ours. A good deal of anger stems from Claire's death because I put so much of myself into hen so much of my life, my soul, and my spirit into her being. I would occasionally see myself reflected back in hen the goodness of me, mostly, the better parts of my personality, and my sense of humour; my ability for music, and my intellect. I understand what parents mean when they speak of a part of themselves dying with the child; in a very literal sense, part of me died with Claire. I mourn the death of my child; I also mourn the death of that part of myself that died with her; I mourn the loss of my family while struggling to learn to function in the "new" family. I am surrounded with the unfairness of life.
Late one mid-December evening John found himself searching through a succession of web sites that dealt with organ donations/Most of them were designed to encourage people to participate, to register as organ and tissue donors. Many
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of the sites featured testimonials from recipients or, in the case of young children, their families. Their stories cited the details of how a vital function had been restored or improved, or indeed how a life had been saved, as a result of a donation. John was touched by the stories, and by the pictures that accompanied them, but it struck him that something was missing. The stories were all from the recipient's point of view; none of them talked about the other side of the coin, the donor's perspective. But, just as important, what about the donor's family? In many cases, they are the ones who must make the decision and sign the consent forms. The picture being painted, therefore, was not complete. He wanted to do something to correct this imbalance. He decided this might be a good time, and a good way, to share something of Claire's story. John put together some material, attached it to an e-mail entitled "Organ Donation," and sent it off to the Hamilton Spectator, addressed to publisher Jagoda Pike and editor-inchief Dana Robbins. "This information," John wrote, "may lend some insight as to how this event has unfolded for our family and also how it has benefited others. Knowing our child's heart beats in another individual and her lungs breathe in another individual's chest has given us a small measure of comfort with this devastating event in our lives. By letting people know about Claire's donations, we felt we could help raise awareness of the importance of organ donation and at the same time honour her memory and life. As tragic as the death of a child is, Claire gave the gift of life to so many. And for this she should be honoured."
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John got a response from the newspaper almost immediately, and a month later the Spectator ran a major feature based on the material he'd submitted. It began with a huge colour picture of Claire on the front page. It was discussed on page 2 in a lengthy editorial by Dana Robbins. And in the paper's weekend section, The Magazine, there was a full page devoted to Claire's story. As Dana Robbins explained in his editorial ("One Family's Extraordinary Gift"), he didn't open John's e-mail right away: It "sat unread on my e-mail list, along with the 150 or so other untouched messages that had accumulated there." But Jagoda Pike did read it, and she asked him about it the next morning. Robbins opened John's e-mail, then spent the next twenty minutes reading Claire's story, "captured so wonderfully, and achingly, in her father's remarkable eulogy. John is a registered nurse, but he has a poet's appreciation of the language; he writes with a passion undiluted by sentimentality. "Afterwards, I called John at his home. I wanted to personally acknowledge his letter, and to offer the newspaper's condolences to his family. But I also, deep down, wanted to satisfy my own curiosity about John. I was struggling to understand how a family that had so recently been dealt the ultimate devastation, could already be thinking of how that devastation might help others. John and I chatted for about five minutes, so I make no pretence of any great understanding or insight into the man. But in those few minutes, one thing became evident: John and Brenda and Jesse are just what they seem: Good people, caught in the grip of an
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unimaginable horror, reaching out to help others." The story was laid out in three full-length columns, the first of which featured John's eulogy in its entirety. As Robbins wrote of the eulogy, John "mostly talked about Claire and her inspiring, but heartbreakingly short life. Finally, he relates a very special conversation that occurred between a father and a beloved daughter."
I told her in one of those many intimate conversations we had prior to her surgery that I believed with all my heart she was bound to do something really huge with her life; not something involving fame and fortune, but something really big that would impact a lot of people. I don't mean to say that our child is any better or more brilliant than any other child, just simply I had a profound visceral instinct, a parent's intuition, that this kid would accomplish something really big. Exactly what that would be none of us knew. She had such a powerful sense of giving; giving of her time, love, compassion, her sense of humour, and giving of her courage during an awful six-week period of our lives, leading up to her surgery and unexpected death. The four of us spent Thanksgiving weekend together having an amazingly intimate, beautiful time together We left our tears tucked away somewhere and shared joy, love and a family intimacy I've never experienced before in my life. We experienced moments of the most elusive of all human feelings; true happiness and peace. One week later; Claire lay brain dead, intubated with a ventilator breathing for her; all vital signs looking perfectly normal save for the fact her brain was dead. She was gone, leaving behind her perfectly healthy I I-year-old body
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This is the part of the story where Claire gets to do something really big with her life, meets her destiny so to speak, to change the course of history on our little blue planet. She was an obvious candidate for organ donation.The medical team asked us if we were agreeable to having her organs donated. Without so much as a heartbeat, Brenda and I agreed to the proposition. The transplant team from St. Joe's arrived to begin their assessments and to find suitable recipients for her otherwise perfect organs. Claire was about to do her "really huge thing" that would directly impact the lives of many people neither she nor us even knew. Suitable recipients were found; surgical , teams arrived from various places and retrieved healthy organs to return to their respective sites for transplantation. Brenda and I imagined parents somewhere later that night, with a child recovering in an ICU post transplant,Those parents praying, crying, hoping for their child's recovery from the surgery; suffering a silent grief felt only by a parent with a sick child. We imagined those children with the aid of skilled surgeons and intuitive nurses, recovering from the transplant surgery, fulfilling those parents' hopes and prayers. Dreams begin to form, plans take shape; a new future unfolds for a once desperate family. Life arises from death.
John's submission to the Spectator also included a letter that the family had received from Organ Donation Ontario, and this too was featured in the story. Its language was less moving than John's eulogy, but its message was no less compelling:
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On behalf of Organ Donation Ontario, the recipients and their families, I would like to express our deepest sympathies on the recent loss of your daughter Claire. I also want to thank you most sincerely for allowing Claire to be an organ and tissue donor As a result of your generous gift, six individuals with serious or terminal medical conditions have been helped. A young child is now free from the confines of dialysis. Other recipients are now released from the ravages of liver and kidney disease.The heart recipient is at home with her family, time together that would not have been possible without your gift.The young lung recipient is breathing easier and two people have been granted the gift of sight. All of this became possible through your gift. Your decision to choose organ and tissue donation has truly been a lifesaver for all of these individuals. It is my hope that the knowledge of these successful transplants is in some way a comfort to you and your family as you cope with your loss. Sincerely, Tracey Hamilton, Reg. N. Regional Transplant Co-ordinator, Hamilton
The centre column of the feature spread showed a series of photographs of Claire alone and with her friends and family. In the last column, there was a poem written by Claire's sister, who at the time was thirteen years old.
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I Dreamed By Jesse Lewis I dreamed Claire At the park Played and laughed Beautiful I dreamed Claire In heaven, Sleeping peacefully on a cloud, Exquisite I dreamed Claire Gone from my life Shattered my heart Painful Heaven, Serene, Peaceful, Flying, Imagining, Floating, Cloud, Star, Harp, Angel, Hovering, Glistening, Shimmering, Gorgeous, Dreamy, Torture Sisters should last long, They should never have to leave,
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I wish Claire were here. She could be with me, Cuddling in my arms of love, She's gone from my life. A burn doesn't hurt, As much as losing Claire Bear, Nothing could hurt more. She's gone forever, I'll never love anyone else, The hole still remains. It can't be repaired, With a simple kiss or hug, Just with parents' love. Love, Compassion, Needed, Holding, Cuddling, Whispering, Happy, Cheerful, Kindness, Desired, Worship Love, Blissful, Heavenly, Loving, Cherishing, Appreciating, Lips, Hearts, Hands, Words, Kissing, Hugging, Saying, Supple, Soft, Odium.
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The newspaper story ran on Saturday, January 12th, 2002. A week later the Spectator devoted another full page to Claire, this time reprinting readers' responses.
Over the years I have read thousands of newspapers, magazines and books and never been so deeply moved and captivated by a story.... I kept being drawn back to her story and have read it over and over As tears clouded my eyes and dripped onto the page while I read, I experienced feelings never felt before. Gail LaForme, Hamilton The article detailing the life and death of Claire Lewis is the most moving thing I have read in some time. I'm a 22-year-old McMaster student given to cynicism. I don't usually care much for "human interest" stories. But this morning I found myself crying over the poems and letters included in the article. Andrew Kareckas,Toronto I was moved to tears as I read Claire's father's most beautiful and eloquent tribute to one of his two precious girls. What a testi.mony to this unforgettable young lady... .John Lewis, your goal of reaching out to others has been met. May God bless you and your family. And you were right: Claire accomplished huge things with her life more than words can say. Heather Giardine, Burlington
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There were others: one from the mother of a fourteenyear-old boy whose lung transplant had saved his life; another from a mother who'd also lost an eleven-year-old daughter; another from the grandparents of a four-year-old girl who will eventually need a heart transplant if she is to survive. The Lewis family was deeply moved to see that Claire's story had touched such an emotional chord in so many people. But the response that had the greatest impact on John and Brenda was not in a letter; it came in a phone call. It was neither gratifying nor supportive, it was simply long overdue: It came on Monday morning, the 14*, two days after the newspaper story was published. John answered the phone and found himself speaking with Hamilton Health Science's Director of Critical Care. This was the Lewis family's first direct contact from the hospital since Claire's death, three months earlier to the day.
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D Critical Care, was calling John to arrange a meeting

between the family and the hospital representatives. He was new to the hospital, and to Claire's case, and John's manner caught him off guard; he might have expected John's reception to be cool but not blatantly hostile. John was not at all happy to see that the hospital was finally calling. He was angry that it had taken so long and more than a little suspicious of the timing: Had the Hamilton Spectator story not appeared two days earlier, would this call have even taken place? "You're a little late, aren't you?" John answered tersely. "Why are you calling me now? Are you going to assume responsibility for my daughter's death?" "Well, we can't go that far, Mr. Lewis, I " "Why not?" John snapped. "It's pretty clear to me what happened. I have the health records." "We know you do."
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r. Peter Kraus, Hamilton Health Science's Director of
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"Yeah, I'm sure you do know. Are you here to talk about responsibility? Are you going to talk about the nursing? Are you going to talk about physicians not showing up? Are you going to talk about a resident walking out of the icu?" There was a brief silence before Dr. Kraus responded. "Well, we do want to discuss issues, and we want to discuss our recommendations." "Yeah, I'm sure you do." "We need you to partner with us, to come up with some good recommendations, so this doesn't happen again." "Partner with you?" John said incredulously. "Yeah, we really need your input, yours and your wife's input; we need you as part of our team." "I'm not interested. I can't see the purpose of a meeting. If you want to talk about your responsibility, your staff's accountability, put me down for a meeting. If not, it's a waste of time." So ended the conversation, as did several subsequent attempts by Dr. Kraus to get John and Brenda to come to the hospital. John balked at the notion of "partnering" with HHSC, while Dr. Kraus continued to deflect the question of accountability. Over the next two weeks, the volleying continued, until John decided that a change was in order: instead of "if" such a meeting would take place, he wanted Dr. Kraus to clarify who exactly would be there. "It will be you and Dr. Hollenberg," John insisted. "We do not want to meet with the attending; we do not want to meet with any nursing staff or anyone else connected to that hospital."
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More discussions ensued, but John remained steadfast. "I've been to family meetings, I know what they do," he explained to me. "They line up a wall of people, a wall of white coats, just to intimidate the family." Eventually, Dr. Kraus conceded, but John wasn't quite ready to make an appointment. Instead, he turned to a new issue. He knew that immediately after Claire's death HHSC would have been required by law to conduct a review, called a Sentinel Event Peer Review. He wanted a copy of the minutes of the committee's meeting. Dr. Kraus declined his request. "Then what's the point of meeting?" John asked. "You're not being up front with me, you're not being honest with me." "It's an internal document, it's confidential," Dr. Kraus answered. "Confidential? If we're having a meeting to talk about Claire's death, that document becomes real important." "We could share it with you at the meeting," the doctor suggested. "No, no, no. I need it ahead of time, to see what you've come up with." "Well, I can't do that." "Well, then we can't meet with you. It's real simple, Dr. Kraus. We have that in our hands, or there's no meeting." Dr. Kraus eventually agreed to send the report to John but only if he and Brenda would meet with the hospital representatives. "Okay," John said, "but first let's see the document." The report arrived two days later by courier. It was just
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slightly over one page in length. There were three short paragraphs outlining the purpose of the meeting and describing the review process itself. This preamble was followed by three sections. The "Case History" comprised a single paragraph, beginning with Claire's initial consultation with a pediatric neurologist in August and ending with the details of the organ retrieval on October 15*. Within this one-paragraph section, which totalled twenty-one lines, the description of the events that occurred during the final conscious hours of Claire's life took up only two sentences. The next section, "Matters Discussed," provided a pointform list of seven "matters" but offered no elaboration at all on what had been "discussed." Its one-sentence conclusion acknowledged simply that the management of sodium and water homeostasis in the post-op phase of this type of procedure "can be complicated" and that "this patient presented some significant challenges." The final section, "Recommendations," offered another list, six actions to be undertaken in response to the review, including, as its final point, "A meeting with the family should be arranged." The report itself was undated, but it referred within the introductory text to the date of the peer meeting itself, November 19*, 2001. It ended as it began, with a single word written in boldface capitals: CONFIDENTIAL. John couldn't believe what he was reading. He was enraged by its brevity and especially its lack of substance, its inconclusiveness. The next day, when Dr. Kraus followed up
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with another phone call, John could barely contain himself. "You sent that to us? A child dies, and you write a page? Have you talked to the doctors? The nurses? About what the hell went on in the icu? Have you looked through the chart? Have you done a chart review? This is nothing.'" "Well, Mr. Lewis, we feel there's some solid recommendations in it." "Like what? 'Meet with the family'^ John was appalled by the review but also insulted. It fuelled his outrage and heightened his suspicion of the hospital's intentions. Ultimately, however, he and Brenda agreed to attend a meeting. They had nothing to lose, and despite all indications to the contrary, they both hoped that, in a faceto-face situation, some answers might be forthcoming. On the other hand, John braced himself, preparing not for the best possible outcome but the worst. His demeanour would be no less adversarial, his attitude no less hostile. Bill Frid, John's brother-in-law, agreed to accompany John and Brenda, not only to lend his moral support, but also to provide a more objective assessment of the discussion. It would be important, they all agreed, to have a third-party perspective, someone sitting on their side of the table who was less emotionally involved than John or Brenda and less antagonistic than John. His role, Bill explained, was "to be as impartial as I could. I wanted to try and hear the things that perhaps John and Brenda couldn't hear." Prior to the meeting, the three of them also discussed their game plan. "We talked about it ahead of time This is what we're going to do, this is what we're not going to do'
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and part of that was so John could be better prepared and not blow a fuse. I remember saying to him, 'Look, what they'll look for is being able to write you off as an irrational parent, so don't give them the ammunition."
The meeting seemed destined to go off the rails before it even started. Instead of two hospital representatives, as agreed upon, there were six. Bill wasn't surprised to see such a crowd. "They do that," he said. "They bring in the cavalry, they circle the wagons. I knew it would be like that, that they would bring in as many people as they could to sit around that table, for an intimidation factor. They'd never admit to that, but hospitals close ranks pretty quick." To make matters worse, one of the uninvited participants was Claire's attending physician. "I couldn't prevent them from coming," Dr. Kraus told John apologetically. When Brenda saw him, she almo>st fainted. There he was, directly across the table from John, sitting stiffly in his chair, his arms crossed high over his chest. John attributed his presence to simple "physician arrogance." "He didn't seem to have a problem with being there," he said. "It was a stupid thing to do, I thought, but I guess it didn't occur to him." John was as shocked and displeased as Brenda, but he was determined not to let anything, or anyone, distract him from his mission. "We should have walked out then, perhaps," John told me, "but in the end I think I just knew I was so right that I had nothing to lose by them being
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there. It was, again, just that intuition." As the group began to settle in, Dr. Kraus prepared to convene the meeting, whereupon John brought out a tape recorder and set it on the table in front of him. "You can't do that," Dr. Kraus told him. John stood up and picked up his bag. "Then Fm outta here." Brenda and Bill stood up with him. "Well, wait a minute, Mr. Lewis, please." "We tape it, or I walk out the door, guys. It's entirely up to you. You can decide how this meeting is going to go." There followed another delay. "They sent the risk management person off," John explained, "to check on it, to call the lawyers, I guess, someone in downtown Toronto, and say, 'Well, this guy wants to tape it. What should we do?'" Twenty minutes later they got permission to record the meeting. Dr. Kraus proceeded to introduce his colleagues: Claire's surgeon; her attending physican; another critical care physician, Dr. Charles Malcolmson; Nancy Fram, Director of Critical Care Nursing; and Linda Daniels, HHSC'S Director of Patient Services. On this last introduction, John interrupted Dr. Kraus again: "He said Linda Daniels in Patient Services, and I said, 'Excuse me, it's Risk Management, not Patient Services. Don't confuse Patient Services with Risk Management. Let's be really clear about who's here. This is internal. This is for you. Not me or Claire or her mother. Not Patient Services Risk Management. Big difference.' So he said, 'Yes, Risk Management.' 'Yeah,' I said. 'Thank you.'" John glanced over at Linda Daniels to see if she might challenge him. She remained silent.
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Dr. Kraus tried to begin again. John stopped him again. "Excuse me," he said. "Sorry for interrupting, but let's be real clear about who we're talking about." He reached into his bag, took out a framed photograph of Claire, and placed it on the table facing the group. Then he sat back, glancing at the faces around the table. Some looked at Claire's picture; others tried to avoid it. "Those guys are really good at talking in third person," he explained to me. "Clinical, objective. It's a case, it's an event, a sentinel event, an adverse event, all sorts of acronyms and euphemisms everything but what it really is, what really happened. They've had years of experience, and they're good at that, not touching it, not getting near it, and not being affected by it." Finally, Dr. Kraus began. To John's dismay, however, he quickly realized that Dr. Kraus had nothing new to offer them. Instead, he proceeded to read aloud from the Sentinel Event Peer Review, the same document that had so incensed John. "He just went down the page, almost verbatim. That was the script. This was, 'Well, this is our story, we're sticking to it,' basically. With the ultimate goal of 'She died of complications.' That was it. For which they have no responsibility, no accountability; they have nothing to do with it. This was just a complication of surgery." John sat quietly, listening intently, stunned to think that the hospital would attempt, so brazenly, to whitewash the incident. Dr. Kraus made a reference to diabetes insipidus, then to an obscure condition called cerebral salt wasting. "I said, 'No, no, no, no. It wasn't cerebral salt wasting. You
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know it, and I know it, and don't waste my time/ Which kind of shocked them. That got their attention, when I could speak to this syndrome of cerebral salt wasting. It's a kind of rare condition no one's sure if it even exists. I started citing papers to that effect, and it shut them up and stopped that pathway. And that was the research that came into play. The research allowed me to speak at their level, too, instead of trying to speak in lay terms. 'Don't go down this road, guys.' And it wasn't even diabetes insipidus. So I said, 'You're wrong there' Wrong diagnosis still.n Soon it wasn't just John interrupting Dr. Kraus but everyone else talking over him, talking to each other, to John and Brenda. Even as one of them challenged John on some point or other, someone else would seek his cooperation. "We thought you'd want to help us," said one of the executives. "If not," said another one, "other children might die in that icu." John wasn't buying any of it; it was too blatant to be taken seriously. "The Director of Critical Care Nursing said to me, 'You have experience and insight that would be invaluable, and with your input we could really make a difference in this hospital.' And I said, 'You want to pay me $150,000 as a consultant? I'd be glad to come in and talk to you about your icu. Other than that, I've got nothing to say to you. It's your icu, it's your problem, not mine.'" The meeting seemed hopelessly out of control. Dr. Kraus pressed on valiantly, holding to his script, watching nervously from the corner of his eye as the storm around him gathered momentum.
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"It got out of hand," John said, "because I think people were feeling the heat. The attending, the chief of nursing, risk management. I think everybody was feeling a little bit ... cornered, I guess, would be the word. And that's where the Director of Critical Care lost control, at that point. It was real clear when people start talking a lot and defending their positions or trying to dump it in our lap that's when things got out of control. Which left it wide open for me to step into it." But John didn't step into the fray quite yet. It would take another push, another blow, one more vicious than any before it. It came on the heels of Peter Kraus's concluding remarks. "He finishes his spiel," John told me, "and then the attending physician starts with, 'Well, Mr. Lewis, you and your wife gave her the fluids and that went into her brain.'" For an instant, the whole room fell silent. "The attending is sitting across from me," John said, "and what does he open up with? 'Mr. Lewis, you gave her the juice to drink at lunchtime. That fluid went into her brain and killed her.'"
This is the opening crack from the attending. "She had too much fluid in hen and it killed hen You and your wife gave her the fluid." And he's pointing at me. Sitting and pointing. I stood up, and I was going to I'm nonviolent, I've been a completely nonviolent, passive person my entire life I started to get up, i was going to go across the table at him, and Brenda got my arm and held me down. The other physicians were horrified at what he said, just absolutely horrified that he would come out with something like
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that. And then he went into a rant about he blamed the anesthesiologist, he blamed nursing, .he blamed the lab, and then he started blaming his residents. He just went down the list....
John had found his line in the sand. Perhaps he hadn't realized exactly where it was, or even what it meant, until someone crossed it. Now the warrior rose.
I knew who did what, who did what when. I said that to the attending; I started calling him on stuff the nursing, the physicians, the residents, the orders. And everyone sat in silence; they were just completely stunned by the amount of knowledge and understanding I had of it. They treated me like an idiot. They assumed I was an idiot, and they were arrogant. And that was a big mistake.
"I asked the attending, 'Did you realize that at eleven o'clock in the morning she put out over a thousand c.c.s of urine in an hour?' He says no. And the surgeon sitting beside him went, 'Jesus, what were you Jomg?'" Had the attending known that Claire's urine output was that high, surely he would have realized that she was flushing out her peri-operative fluids. The DDAVP order would have ceased immediately. The crisis could have been averted right there and then. "He completely missed it. And I know he missed it, or he would have done something about it. He did nothing about it."
So then he started blaming the anesthetist at the General. I said,
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"The General? Have you seen the General records?" And he said no. I said, "Has anybody in this room seen them?" No one spoke. John turned to Peter Kraus. "You work at the General, Dr Kraus have you seen her records from the General?" He said no. I said, "I've had a copy for two months'.' Silence. No one had even thought about getting the records. So I said, "Here's your physician blaming someone at the General, but you guys haven't seen the records from the General. How can you make that assumption?" Then he started blaming the nurse. I said, "The nurse is just following the orders the resident's orders, which I presume are your orders, which were a death sentence. Did you know your resident wrote orders that basically signed a death warrant? I can show you if you'd like to see them. It's a death warrant for any kid. Were you aware of that?" "Uh, no, I wasn't." He's stuttering and stammering.
John turned away from the attending but remained on the attack. Now he spoke to Nancy Fram, Director of Critical Care Nursing. "Did you know a nurse had Claire for four hours of a shift and walked off a shift without so much as writing a narrative note about her? Wrote nothing and walked off her shift?" "I wasn't aware of that," she said. "Are you aware that one of your nurses didn't send in ordered blood work and urine sampling on two occasions? Were you aware of that?" "No, I'm not aware of that." "Were you aware your nurse didn't make a call to a physician when this kid's vital signs fell apart at two o'clock? Are you aware of that?"
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"Uh, no, I wasn't." "Are you aware that the nurse opened her shift by double-dosing my daughter on Tylenol? Right off the get-go. Were you aware of that?" "Urn, no, I'm not aware of that," "Are you aware of the protocol and the parameters of administering DDAVP?" "Uh, no, I'm not." "Well, your nurse sure isn't." John continued his barrage of questions. "When's the last time you did any sort of staff evaluation in that icu?" he asked Nancy Fram. "Before you answer, you'd better have a good answer, because the College of Nurses and the coroners everyone's going to want to know the last time you documented staff evaluation." She said, "I would have to look at my records." John said, "You might want to get those records out when we're done this meeting. And you might want to have a look at them really quick, because I'll bet you haven't done one in three years. With the shape of that icu. . . . " John turned to address the room. "Complication, my ass," he said. "I'll tell you what happened." Now came his version of the events and circumstances, beginning Friday night, with Claire's misdiagnosis and her misplaced records, then to Saturday morning and her nearfatal seizure the "dress rehearsal" for her death and, finally, to her hour-by-hour deterioration on Sunday afternoon her sodium dropping, her fluid levels steadily rising until finally she succumbed. As John led the group from
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one gruesome detail to the next, no one said a word.

At the end of the table there was a Dr Malcolmson he's a critical care guy, he's in his sixties, he's probably been a critical care pediatric physician for thirty something years and he sat there on his elbows with his head down. And I called him out a couple of times. I said, "Correct me if I'm wrong, sin" I leaned over and I looked down the table at him, trying to get his attention. I said, "You stop me anytime and correct me if I'm wrong in my assessment of what happened to my child. You hear me? Can you hear me?" He nodded. About every five minutes I'd say, "Sir? How am I doing? We okay here? We all right?" He wouldn't look at me.
Dr. Malcolmson did not interrupt John, did not question a single point. Neither did anyone else at the table. Everyone remained silent, except for the surgeon. Dr. Hollenberg's gasps and muffled groans could be heard throughout John's gritty account. "I didn't know that," he would mutter. "Jesus. Why didn't I hear about that?" "Quiet, Rob, don't say that!" someone would whisper. "At the end of my little rant, there was just silence. And Dr. Hollenberg leaned across the table to me, and he said, 'John' not Mr. Lewis 'John, you know what happened to Claire, don't you?' I said, 'I'm pretty sure I just established that, that I know.' He started apologizing, and he got cut off, he got drawn up, sharply, by the people there. They knew exactly what they had done. And this is what astounded me. They went into this meeting thinking they could just sandbag us and walk away."
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Part of John still couldn't believe what his eyes and ears were telling him. It was hard enough to imagine they would act this way with anyone, but with him? With his knowledge? His unequivocal grasp of what had happened? "I was a registered nurse, I was an employee of the hospital, I was there when she died. . . . I was actually that naive to think they have a really good opportunity basically, on the phone, I told Kraus, prior to this meeting, 'You guys have a great opportunity here.' I was naive enough, and hopeful enough, to think that this would be like a reckoning 'We're sorry, but this is what happened to your daughter.3" John stood up, preparing to leave, but he had one more thing to say to the still-silent group before him. He leaned forward, half-grinning, half-scowling at them. "C'mon, guys," he said, "I work here. I've been on that side of the table, and now I'm over here." Now he was glaring into their faces, one after the other. "I know what you're doing. You know I know. You're not going to get away with this." Now he was tapping his finger on the boardroom table. "You're not walking away from this one." When John finished, Brenda stood up and headed for the door, without looking back, without having uttered a word. Bill had hardly gotten a word in either, but he couldn't leave without speaking his mind. "I'm embarrassed to have worked here," he told them. "And if I worked here now, I would resign on the spot. This is the worst display of professional conduct I've ever seen." As John made his way toward the door, a couple of people tried to hand him a business card. "I said, 'Excuse
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me,' and just pushed past them. You're giving me a card? For what? . . . Like, 'Call me, we need to talk about this?' No, we don't. There's nothing to talk about." Brenda Lewis is as strong-willed as her husband, but she is not as thick-skinned. Moreover, she was taken completely off guard. She'd come expecting at last to hear something, anything, about what happened to Claire. At the very least, she thought someone from the hospital, anyone, would have extended some measure of sympathy for their loss a word, a gesture. Instead, she was subjected to one of the crudest experiences of her life. She'd never participated in such a meeting as this one. For that matter, John told me, neither had he.
It was just one of the most horrible, brutal things that I ever witnessed in my life. All it lacked was the physical brutality, of beating us up, just physically beating us. It was unbelievable. It was just one of the most brutal things I've ever witnessed in my life that group of people, in that meeting, with these grieving parents. It was just astounding. And these people go home at night to their children, and their wives, and their lives. And they get up the next day and go to work. I just... ."How much do they pay you to do this? Like, do you get paid a lot?" Man
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ithin hours of hospital, John v his computer. leaving theinstinctively, justwas back at He knew as he had right after Claire died, that he had to get his thoughts down on paper. He needed to voice his response his retaliation to the events and remarks of that dreadful afternoon. He drafted a letter, working on it all that evening and into the next day. When it was finished, he addressed it to Murray Martin, President and Chief Executive Officer of Hamilton Health Sciences Corporation.
Dear Mr Martin: This letter is in response to a meeting at McMaster University Medical Centre (MUMC), February 27, 2002, to discuss the results of an internal investigation conducted by MUMC, into the events surrounding the death of Claire Elisabeth Lewis, October 14, 2001. Death occurred day 3 postoperatively in the PICU at MUMC. Brief History: Claire Elisabeth Lewis, [date of birth] April 15,
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1990, no known allergies. Presented with visual disturbances and headaches near end of August 2001. Diagnosis of craniopharyngioma; a benign tumour of the pituitary gland. Subtotal resection was accomplished with a right craniotomy October 12, 2001. Claire died of "catastrophic cerebral edema" post-operative day 3 in.the PICU at MUMCThe' Chief Coroner of Ontario is investigating her case as well as the Pediatric Death Review Committee, the Intraoperative Death Review Committee, CPSO and CNO. We had hoped to hear how events unfolded that resulted in our I I year old daughter's death, the processes and problems both nursing and medicine encountered, and plans to change procedures/policies to prevent this tragic event from happening again. We did hear of some problems medicine encountered, i.e., communication with nursing staff, communication with the General site, ambiguity in the endocrinologist's pre-op orders, etc. At no point in the meeting did the representatives of MUMC acknowledge any responsibility or accountability in the mismanagement of Claire's care that resulted in her death. No one at the table from HHSC was aware of the numerous problems, errors and outright negligence evident in the medical record. I should think had a proper review been completed the errors, omissions, neglect and apathy towards this child's care would have been apparent. No physician in the room had seen the intraoperative record from the General site; I have had a copy for two months, yet they were quick to try to place blame on the anesthesia team at the General, without any facts. One has to ask, how well did this investigation look at the mitigating problems encountered with this child's care, considering no one really had a grasp on this child's clinical record? For example, Nancy Fram had no idea why I, as a registered
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nurse, would be complaining to the College of Nurses; she obviously did not open this chart prior to this meeting. She had no sense of the deplorable nursing care this child received while a patient in this ICU. Currently, three out of three nurses involved in Claire's care over a mere 46 hours, are or will soon be answering to their professional college regarding their nursing practice. This manager has no clue as to the state of her ICU nursing staff's performance of duty during Claire's 46 hours of care, i.e. ne lected orders, reprehensible medication administration, substandard documentation, appalling lack of assessments, no communication with medical staff, no interpretation of critical blood values, no understanding of fluid balance, a registered nurse unable to interpret critical vital signs, in all more than this letter is able to cover In general, this ICU manager did not have an inkling as to the events surrounding Claire's death. She looked to us, devastated grieving parents, whose child died a mere 4 months ago, for the answers to fix her ICU nursing practices by trying to draw us Into some sort of co-op arrangement to identify prob/ems.This is a simple and obvious tactic (with a plethora of literature to support it) taught in most management courses, designed to deflect the truth, not support or reveal the truth. Further no physician had a clue as to the negligent performance of the resident's care. No physician seemed to know that Claire had put out nearly 3 litres of urine by 1200 on October 14th, which was replaced with 2/3 & 1/3, a hypotonic solution, ordered by the resident, No physician at the meeting seemed to know that Claire had put out 2,260 c.c. of urine, replaced again by 2/3 & 1/3, with no order for DDAVP written until 0955 on October 14, 2001. No physician in the room seemed aware that Claire's vital signs began to fall apart @ 1400 on October 14,
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2001 .We are supposed to be discussing our daughter's death, yet [the attending physician] chose to argue points he felt he needed to make, stating "I have other patients besides your daughter to care for" and "You need to understand this is a teaching hospital, we will have R3 residents caring for patients under my authority." These were only a couple of the totally insensitive comments made, which given the situation were totally inappropriate from a professional at HHSC, which also had nothing to do with the purpose of the meeting, to discuss what happened to our beautiful child. He was both rude and insensitive to our feelings and spent most of his time blaming other services for Claire's death, i.e. anesthesia at the General site, nursing in the ICU, the lab, etc. Linda Daniels of risk management also chose to take a more argumentative approach, not offering answers as to what happened to Claire. She tried to put us in a position of feeling obligated to assist HHSC in its attempts to rectify their own internal problems in delivering patient care, with the same deflecting co-op/partnership tactics displayed by Nancy Fram. We could not attempt to meet with HHSC in the future with her involved in any meetings. Dr Malcolmson, who I believe directed the [Sentinel Event Peer Review] investigation, did not come out with so much as a syllable, never mind .a word, in the entire meeting. He was never asked for his input, nor did he offer any insight to the cause of Claire's death in MUMC's ICU, This leaves us to believe there must be something he couldn't share with us in the presence of the tape recorder; or there wasn't a thorough enough investigation completed, leaving him with nothing to offer Dr Hollenberg attempted to speak from the heart towards the end of the meeting, trying, we believe, to bring a conciliatory
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attitude to a very acrimonious situation these professionals put two grieving parents in, but was rebuffed by his colleagues; in my opinion silenced. He looked embarrassed by both the tone of the meeting and his colleague's behaviour towards my wife and myself. There was an air of self-preservation, with risk management trying to implement some sort of "damage control" agenda in this meeting. This meeting was not about concern for our child, not about concern for our need for answers, and not about truth and transparency in this process. This was an embarrassing display by health professionals representing HHSC with an agenda that did not include our dead daughter Claire, my wife nor myself. For the love of God, please teach these people how to express some dignity, respect and grace when dealing with the parents of children' who die while in your hospital. You might want to instruct your representatives to do some homework prior to meeting with families in the future. Knowing a little about a case in which a child has died shows some respect to both the deceased and the parents. Sincerely, John & Brenda Lewis
The letter went to Murray Martin by e-mail on the evening of Thursday, February 2,8th. John also e-mailed fifteen copies to each of the seven hospital representatives who had attended the meeting; the local and regional coroners; Dr. Reddy, who'd assisted Dr. Hollenberg in the surgery; Bill Frid; and four more of the hospital's top-ranking executives. His first response came early Friday morning. Mr. Martin wrote to assure John and Brenda that he would look into the matter immediately.
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Over the next several days, John received a steady stream of e-mails, each one urging him to come to a meeting. The most pressing of these came from Dr. Andrew McCallum, Chief of Staff, and Margaret Keatings, Vice President, Professional Affairs and Chief Nursing Officer. Mr. Martin was launching a full-scale review of Claire's case, under their direction. John denied all requests, explaining only that he had said a great deal already but had yet to hear or see anything from this institution that was of real substance. "I can't imagine a meeting would serve any purpose," he told Margaret Keatings in an e-mail. "I can't put myself or my wife in the situation we found ourselves in previously with HHSC. The emotional stakes/consequences for us are too high to trudge down that road again." Three weeks later Margaret e-mailed John. The review of Claire's case had been completed; she wrote to invite him, once again, to meet with her to discuss the report in person. John declined. There would be no further discussions until he saw the review. "We are happy to share our review with you," Margaret replied, "but had hoped to expand on this review and the actions we intend to take in response to our findings. We also wanted to apologize in person." Referring to John's acerbic comment on the timing of the hospital's initial response to the family (after the Spectator story came out), Margaret added, "Honestly, though, John, the story was not what initiated the involvement of Andy [McCallum] and myself. We became involved when we became aware of the delays in the earlier review." This comment,
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well-intentioned as it was, touched another raw nerve. John's reply to Margaret came quickly and struck sharply:
I meant that HHSC's original contact came on the heels of the article appearing in the Spectator. We had heard not a breath of sound, not one word from MUMC for more than three months after Claire died, which spoke volumes to me and many other people following this case. 1 know from my experience, we contact the family much sooner than that to meet, discuss, and answer questions surrounding the death of their loved one out of compassion, dignity and respect. As I explained to a nursing colleague who didn't quite understand the basis of my complaints, MUMCs silence fostered the anxiety, the distrust, the suspicion, by not responding promptly and honestly legal considerations aside. We are dealing with a devastated group of human beings here called a family, who deserved respect, compassion and dignity. Can you imagine for even a moment what their behaviour feels like to the memory of Claire? It's as if a dog died in that ICU, not a deeply loved child like a dog you toss out then head off to the next case, pen in hand, ready to write orders like cowboys with six-shooters, totally unaware of the orders being written, i.e., ordering Claire to receive 2/3 and 1/3 IV solution with a sodium of 130 (!!!???), which everyone neglected to check. And who's watching these cowboys? The attending ICU physician who won't accept any responsibility for his residents. Graduating three years med school does not make one a doctor, nor does three years nursing school make one a nurse.There is still a very steep learning curve, experience, much more hard work and developing a sense of intuition of what's right, and what isn't Hopefully as one
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progresses, there develops some understanding/appreciation of the nature of ethics in health care, which would send up red flags for the physicians involved in this case to contact the family soon after a traumatic death such as this. Had this happened to your child, Margaret, or Andy's child, you can be sure that complaints would go to the Colleges, lawyers would be involved, as you guys have the resources to act. Nor would you be partnering with the institution where your child died. You guys can't seem to appreciate the trauma attached to this event. My wife and I witnessed the death of our I I -year-old child. We watched her die in front of our eyes, Margaret. I reached out to touch her as we watched her die without grace, without dignity. We didn't get to say goodbye her brain exploded in her little head. I knew the moment it happened she was dead, and I knew why, with a sodium of 124. I didn't have the heart to tell my wife until the family meeting with the physicians confirmed she was dead.Then I get to hold my 13year-old daughter and feel her legs turn to water as I whisper to her, her sister Claire is dead. Does HHSC respond with any compassion, any effort to help this family? No. We get silence for three long hard months, then asked to partner in a half-baked review of Claire's death, and hear how everyone but those in the room are responsible for her death. I know this is an emotional outburst, but grief is like that Claire should not be dead, which makes this grief a little more brutal, a little more hellish. . . . At this point in time, this review does not carry a lot of importance or weight with us, or anyone else involved in this case. You could include your recommendations, which will be of interest to myself and the coroner; I imagine.
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I know and you know this review is an internal process intended to stay confidential, primarily for risk management purposes. This is not about Claire, this is not about my family, this is not about accountability and responsibility. Please, let's drop all these pretenses, and complete this process with truth, dignity and grace more in keeping with what Claire's life was all about truth, dignity and so much grace....
John and Brenda knew that it was now time to seek legal counsel. They had spoken to attorneys previously, but the results of those meetings were less than encouraging. "I had one lawyer say they needed twenty thousand dollars up front, as a retainer, for expenses, to begin this lawsuit. And he said it 'might' be worth pursuing. I talked to another one, in Toronto I guess he considers himself a high roller and he wanted sixty thousand dollars, either in cash or liquid assets. He said, 'You're going to have to sell your house. You're going to have to come up with sixty thousand dollars, and then I'll take this case on. If you're prepared to do that, Mr. Lewis, I'd be glad to take this case. If you're not, good luck finding a lawyer.'" Bill Frid told them that a friend of his had recommended a lawyer named Paul Harte, who'd been doing some pro bono work for the Trillium Foundation, a nonprofit Ontario-based agency that operates a range of counselling services and recreational programs for ill and bereaved children. John called him, and they discussed the possibility of a
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civil lawsuit over the telephone. Like the other lawyers, Paul immediately dispelled any notion John might have had about potential financial gains. "I would have told John, right out of the blocks, your case isn't worth anything," he told me. In fact, Paul went on to explain why, in cases involving the death of a child, he spends an inordinate amount of time trying to dissuade people from even pursuing their cases.
There's a weird thing about the law in Canada there's many weird things but one of them is that when you lose a kid it's not worth very much money. Fifty thousand dollars would not be an unreasonable estimate as to what the general damages for pain and suffering are associated with the loss of a child.You could do no worse harm to me than to hurt my child, let alone kill my child, right? Yet I would get orders of magnitude more money if you cut my right arm off. So it's a real puzzling feature of the Canadian legal system.
Unless the case is extremely cut and dried, there are no guarantees that any damages awarded will be sufficient to cover legal fees and expenses. For this reason, it can be difficult to find a lawyer willing to take the case without getting paid up front. The other problem families encounter is that there are very few law firms in Canada that specialize in the highly complex area of medical malpractice. As Paul explained, "Lawyers who don't have significant experience with medical malpractice tend to take a traditional approach, which tends to be ineffective. And there's lots of people who have good lawsuits that are mishandled by
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lawyers who are competent but who aren't qualified in medical malpractice." Unlike the other lawyers John and Brenda spoke to, Paul did not ask John for a hefty retainer fee; in fact, he explained that his law firm, which works exclusively in medical malpractice cases, takes a unique approach to what he calls cases with "compelling circumstances" and, in particular, to those involving the loss of children. First of all, the firm would work solely on speculation getting paid only if, and only when, the lawsuit was won. Equally important, the firm itself would also cover the costs incurred in developing the case for example, in acquiring the opinion or analysis of outside experts; in complex cases,'these costs alone can run into the tens of thousands of dollars. All modesty aside, Paul explained to me with typical bluntness that he would also have told John that his higherpaying cases help "subsidize" the unprofitable ones. "We do it because our other cases give us the opportunity to pursue some of these other cases which are important for other reasons. And, frankly, it's a circle of goodness. I tell my client when they come in, 'You're going to pay me more than you're going to pay any other lawyer, on your case that's worth two million dollars, but understand that when you're doing that you're paying not only for your case but for the cases I take on where the damages aren't economically justified.'" It was clear to Paul that financial gain was the least of John and Brenda's concerns. In fact, most of that first telephone conversation focused on issues other than the civil lawsuit the College hearings, the coroner's inquest, and, in
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the broadest terms, how each of these procedures would help them achieve their real priorities. It was an ambitious undertaking, against formidable odds, but at the same time, to use Paul's phrase, "undeniably compelling." He asked John to send him a copy of Claire's medical records and any other relevant information, and he agreed to meet with the Lewises after reviewing the files. John was in the midst of organizing his material to send to Paul when he received the letter that changed everything.
On April 24*, nine days after Claire's twelfth birthday, a package from Hamilton Health Sciences arrived by courier. It contained a letter, signed by Murray Martin, and a copy of the institution's review of Claire's case. The package happened to arrive on one of the two days each week that Brenda was working at home instead of at her office in Toronto; John was home too. He opened th package, and the two of them, standing at the kitchen counter, read the letter together.
Dear Mr and Mrs. Lewis: On behalf of Hamilton Health Sciences, I am writing to express our deepest sorrows for Claire's death. We know that her loss has been devastating for you and your family. After a thorough and conscientious review, we have prepared this report on what happened during the course of Claire's care and treatment We have identified serious care and system issues
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and have concluded that her death could have been avoided. For that, we offer our profound apologies. We are in the process of implementing a number of changes that will prevent a similar tragedy. Our commitment to you, and to Claire's memory, is to follow through on every recommendation in the report. We again apologize for the length of time that it has taken our hospital to conduct this review and we realize that delay has added to your grief. We are aware that Claire was a deeply loved little girl, and we respect your courageous efforts to advocate for her and others like her. If, after you read this report, you have questions, we would be pleased to meet with you and your family. It is our hope that at some point in the future, you may be able to help us find further ways of improving the care we provide to patients and their families. Yours sincerely, Murray T. Martin, President and CEO Andrew L McCallum, MD, Chief of Staff Margaret Keatings.Vice President, Professional Affairs and Chief Nursing Officer
The review document was five pages long. Like Mr. Martin's letter, it opened by acknowledging that serious errors had been committed in Claire's treatment: "We understand that the presumed cause of her death was compression of the brainstem due to cerebral edema. The cerebral edema may have been multi-factorial, but the condition was significantly exacerbated by fluid and electrolyte management in the postoperative period." It went further, not only identifying the key
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issues but setting out the steps to be taken to prevent them from recurring: "Where an issue is identified, there will be a section which details action(s) to be taken." Seven key points, each followed by an action plan, were addressed in the review: (1) Failure of staff to transfer Claire's records when she was moved from Hamilton General to McMaster's pediatric intensive care unit [PICU]: "Her peri-operative record did not travel with her, and this resulted in the PICU staff not being aware of the volume and type of fluid given intra-operatively and in the PACU."
Action:The hospital is instituting a policy requiring that the patient's record (or a complete copy thereof) travels with the patient between sites.The Nursing Practice Committee has recently struck a task force to develop standards for "transfer of accountability" for
SHIFT-TO-SHIFT REPOT AND PATIENT TRANSFERS ACROSS SITES OR UNITS

Included in these standards will be the expectation of the team to review the peri-operative record to ensure a complete understanding of the patient's peri-operative care.The McMaster ICU will be, a pilot for the introduction of these new standards.
(2) Failure of staff to recognize, and respond to, Claire's deterioration on Sunday, October 14*: " . . . She complained of headache, which may have been another sign of worsening intracranial hypertension. During this time her fluid balance was positive and she was principally treated with hypotonic fluids. The effect was to give mostly free water which likely diffused into her brain. Additionally, she was
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given DDAVP in the belief that she had diabetes insipidus. Claire continued to pass large amounts of urine over the course of the day even though her sodium remained normal, a fact that was unfortunately not noted by the attending intensivist on his rounds. Claire's serum electrolytes were measured twice during this day, as the frequency of testing had been decreased from every four hours to every six hours during the morning rounds. The last measurement occurred just before she deteriorated, and there are differing accounts regarding when these results were known. An audit report from the laboratory indicates the blood specimen was called to the unit at 1855 hrs. Urine electrolytes were not included in that last set of electrolytes. The team involved did not appreciate that, in fact, she was diuresing at least partly due to fluid overload. The correct approach would have been to restrict fluid, and to measure urine and serum osmolality and electrolytes more frequently than was done."
Action:The hospital has launched a program of education aimed at ensuring that 1CU staff understand and correctly respond to
FLUID BALANCE, DIABETES INSIPIDUS AND OTHER ISSUES IN THE POST-OP
ative management of neurosurgical and other complex cases in the PICU. In fact, there have been two cases of craniopharyngioma in the intervening period in which this approach was successfully used. The DDAVP monograph will be reviewed and changed to indicate that serum and urine electrolytes must be determined as frequently as the drug is administered while in the ICU.The hospital will institute a process of briefing (in the manner of pre-flight briefing in aviation) for difficult cases that are infre-
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quently done, so that all personnel involved in care are apprised of particular issues, events and complications likely to arise. As well, guidelines for management to be used by the team will be developed governing craniopharyngioma excision and other similar cases.
(3) Errors in care and treatment based on incorrect and/or inappropriate information, and improper communication between staff members: "The orders written by the endocrine service underwent a series of unplanned revisions as a consequence of copying thereof. In addition, the staff endocrinologist gave instructions over the telephone for ongoing management of the presumed diabetes insipidus. Despite the fact that DDAVP was given repeatedly, concern did not arise within the team. We believe this was due to a lack of knowledge on the part of the caregivers regarding diabetes insipidus as opposed to fluid overload."
Action: It will be reinforced with staff to be word-perfect in transcribing orders. Orders by consultants will henceforth be written in the order section of the chart and co-signed by the attending intensivist or delegate.This will be discussed at MAC (as well as Pharmacy and Therapeutics) and Nursing Practice Committee to ensure that there will be wide understanding of the importance of this issue.
(4) Failure of staff to respond to Claire's worsening symptoms or to her parents' attempts to elicit action: "The severity of the situation was not appreciated by the team on-site,
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until very late in the care when she became more drowsy and her pupils became more sluggish. Claire's father, who is a nurse, had recognized that there was something wrong. He made his concerns known to the staff. The nurse also noted a change in Claire's condition, and notified the resident. The resident assessed Claire, but did not take any immediate action."
Action: All staff are being reminded of the need to listen to family and loved ones when they articulate concern regarding deterioration. Those closest to the patient often recognize both subtle and major changes before staff, especially if the loved one is a health professional. Nursing and medical educational forums such as M and M [mortality and morbidity] rounds will be used to highlight this problem using this and similar cases. The hospital is initiating a model of patient-centered care, which will incorporate a model of Family Partnership.
(5) Failure of staff to intervene early enough to prevent a tragic outcome: "Once Claire became obtunded, it was clear that she had suffered a major event. The possible causes most probably related to increased intracranial pressure either due to edema or bleeding. In either case, the institution of measures such as Mannitol and brief hyperventilation would have been appropriate at the earliest time possible. When the staff intensivist was made aware of the deterioration, he judged that it would not be beneficial to administer Mannitol, because Claire was already severely poly-uric [urinating profusely]. The value of Mannitol here would be controversial, in that it is both a diuretic and an osmolar agent, which
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could shift fluid out of the brain. It is possible that earlier intervention, even at 1800 hrs or 1900 hrs could have resulted in a different outcome for Claire."
Action: See above regarding guidelines, briefing and education. Particular emphasis is being placed on the emergency management of the deteriorating neurological patient.
(6) Inconsistency of documentation and staff communication records: "It was not clear what decision-making process and critical actions were taken by the team at particular points in time, and responses to interventions were not always and not completely documented. Furthermore, there are differing recollections by key members of the team as to what conversations and between whom these conversations took place regarding specific actions and orders for care."
Action: We are reviewing our documentation system at the hospital. We also are exploring the use of Meditech [a computer-based monitoring and record-keeping system] to augment our documentation. The Critical Care service is also currently revising its patient flow sheets.
(7) Lack of individual accountability and responsibility: "We acknowledge the concerns raised by the Lewis family related to the individual responsibility of the staff involved in Claire's case. The best approach to improving care is to examine caregivers' actions to ensure that there is an open discussion of the issues. Overall, we believe the caregivers in
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this case are competent and capable health professionals]. In this case, the professional Colleges are examining the actions of the professionals involved. It is recognized that supervising medical staff bear the responsibility for the actions of the residents for whom they work, in keeping with the concept of graded responsibility."
Action: All staff will participate in the education outlined above. The Chief of Staff will ensure that Chiefs of Medical Departments are aware of the house staff supervision issues in this case. The Chiefs will be reminded to ensure that attending staff tailor the degree of independence of trainees'to the individual capability of the house staff member Capability must be understood to be a function not only of years of training but also of individual characteristics.
"In conclusion, the reviewers believe that Claire's death could have been avoided and the hospital has expressed its sincere and unqualified regret to the Lewis family. There was a series of events, which collectively and in sequence led to the fatal outcome. The action items detailed above will, it is hoped, lead to avoidance of a similar circumstance in the future." The review was signed by Dr. Andrew L. McCallum, Margaret Keatings, and Susan D. Smith, Vice President, Patient Services. John and Brenda felt overwhelmed not only by the content of the review but by its very existence. "I didn't really expect that," Brenda told me. "I didn't think they would ever commit that to paper. I figured they would probably try and
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get us down there again for a meeting, which they had actually tried many times."
It was devastating in another way, all over again, to actually have that in writing. To get a letter couriered up from the hospital by taxi saying that "We're so sorry yes, your daughter's death was totally avoidable." Probably one percent of me held out hope that this was all wrong and not true.There was somehow one percent of me hoping 'cause we didn't have the autopsy back, and neither did the hospital at that point that somewhere out of that somebody could say no, it was unavoidable, that there was a bleed, a tiny bleed, that it was something. But to have it confirmed, what we had suspected all along.... It's kind of like somebody jabbing the knife in a little further It hurt that much more, because it totally eliminated any small doubt
Even the letter of apology, for all its sincerity, left both of them feeling colder. "It's a corporate apology," Brenda said. "There's absolutely no personal accountability, and there still hasn't been. We've not had one person from that weekend, involved in her care, say they were sorry for what they did or didn't do that resulted in her death. And that is totally different than somebody drafting up a letter and sending it to us and apologizing." "It's like having your child killed by a drunk driver," said John, "then getting a letter of apology from the insurance company." His main point of contention, however, was not with the insensitivity of such an approach, painful as it was for both of them, but rather with its failure to address, let
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alone pinpoint, the real cause of Claire's death. John and Brenda wanted nothing more than this, John reiterated nothing more and nothing less:
Accountability, responsibility, for the health professionals involved in Claire's death. The individuals themselves. The health record, and Hamilton Health Science's own review and apology, clearly outline there were human failures. It wasn't just systems.You can't blame the systems. There's human beings involved here, and human beings that really made mistakes. I'm not sure if they're mistakes as much as it was just an attitude of complacency, an attitude of just not caring enough to do their job. I think there's an attitude reflected in the chart, and in the attending's attitude toward us in that meeting, there's just this pervasive attitude of people just not caring enough. Not treating that child in the bed like one of their own. And I think that's the root cause.
In this respect, the hospital's review was not only flawed but evasive and even misleading: It acknowledged human error but did not confirm the identities of the responsible individuals. It pointed to system-wide initiatives to improve policies and procedures but gave no indication that any direct action whether disciplinary, punitive, or even remedial would be taken against specific doctors, nurses, or technicians. To its credit, the review "recognized that supervising medical staff bear the responsibility," but it went no further on this crucial point than to defer to the judgement of the pending College hearings (which of course John, not the hospital, had initiated): "Overall, we believe the caregivers in
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this case are competent and capable health professionals]. In this case, the professional Colleges are examining the actions of the professionals involved." In other words, John and Brenda concluded, the review told them nothing they didn't already know: "In my estimation," said John, "the hospital wasn't really cooperating. Their review is pretty much a verbatim outline of what I told them happened. It's astounding, when I think about it. Chronologically, the times and events, it's almost verbatim of what I1 told them in that meeting of February 17*. It's the issues I've pointed out and nothing more. And they should have done more. They should have gone further." If anyone was going to do more, go further, push harder, John knew that it would have to be him and Brenda. He was convinced that Hamilton Health Sciences was aiming to move the whole matter into the realm of litigation, where it could be concluded, preferably, through a confidential outof-court settlement. John and Brenda had every intention of proceeding with the civil action, but, as John explained, they had no illusions about its outcomes:
Unfortunately, a lot of families see a lawsuit as some sort of a combination, finally, of placement of blame and responsibility. And it isn't They really see the lawsuit as a courtroom drama the hospital will pay money, and the CMPA [Canadian Medical Protection Association] will pay out some money, and the nurses and doctors will pay out some money and therefore they're guilty;"! have a conviction."And it's not that in the least It's purely about money. It's compensation for your loss.The physicians aren't
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even involved in it, the nurses aren't involved, nor is the hospital. It's handled by a lawyer in downtown Toronto, and it's handled by another one in Ottawa.That's it. It's done by e-mail, it's done by fax, it's done by phone calls. It has nothing to do with an admission of guilt or responsibility.
With the hospital's letter of apology in hand, John and Brenda realized that the picture was now radically different. The financial outcome of the lawsuit might not be any better, but clearly they had a winnable case. No one understood this point better than Paul Harte. "That's something that John, I'm sure, would not have appreciated, because he didn't have experience in these cases before. Whereas I looked at it and said, 'Boy, I do this all the time. Not only have I never seen it, I've never heard of it.' Never heard of a hospital admitting they had liability."
It certainly gives the appearance that they put their financial concerns aside and simply did what they perceived was the right thing, which was to accept responsibility. Essentially I can take that letter, go to the courts, and there's not much they can say about it. So it dramatically simplified the civil action. Now we're really only talking about how much, not whether there's going to be a payment or not.
On May 9th, Paul drove out to Hamilton from his office in Markham, just north of metropolitan Toronto, and sat with John and Brenda at their preferred meeting spot, the kitchen table. Yes, the case was obviously winnable, he confirmed,
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but it was still far from straightforward. Even the simplest cases take a long time to resolve, and this one was still, despite the apparent acknowledgement of errors, relatively complex. Several errors had occurred, and they had involved several different people. Who was responsible for what? And what proportion of responsibility should each party bear? It was still far from clear, for example, how much responsibility each party would actually accept and, therefore, what portion of the damages they would share. The legal term for this is "apportionment" allocation of the relative amount of liability to each party. In this case, Paul explained, apportionment was going to be the crucial, and most difficult, issue. "There's three aspects to a case," he explained. "One, standard of care: did the doctor screw up? Two, what are the damages that you're claiming for? And three is the bridge between the two, which is called causation you have to tie every screw-up to a specific hit of damage. And in medical malpractice, a huge proportion is about causation." If, in Claire's case, the key issue was fluid management, causation would be a question of how much responsibility is attributable to the doctor, or doctors, and how much to a nurse, or nurses, or to some combination of these parties. The other important aspect of causation, and shared responsibility, is that Paul would likely be negotiating with two sets of lawyers those of the hospital and those representing the doctor(s). This is because the hospital's liability extends to its nurses, who are employees of the institution, but not to the doctors, who are not employees but "subcontractors." The doctors would be represented by the Canadian Medical
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Protection Association, while the hospital would be represented by a separate insurer, such as the Health Care Insurance Reciprocal of Canada. Potentially, there could be more lawyers involved: if, for example, there were two or more doctors involved and they were not in agreement as to who did what, or whose actions bore greater causation, those individuals would obviously need to have separate lawyers. All of this was presented to John and Brenda not to dissuade or discourage them but, rather, to be sure that they understood what to expect once the process got under way. "This is something I would have told them at the outset," Paul said. "Nothing is going to happen quickly." But neither John nor Brenda was surprised, or even perturbed, by the prospect of more waiting. The more important issue, in fact, was to get their priorities straight, to be clear on their agenda. It was this bigger picture, in fact, that took up most of their first meeting with Paul. "The lawsuit was not a main feature," Paul explained. "In fact, the work that had to be done was very much centred on all these other issues first and foremost."
One, he [John] clearly was looking for answers,Two, he was also looking for affirmation of his answers. So to the extent that he knew, or thought he knew, what was going on, he wanted to have that affirmed to some extent acknowledged is probably a better word. In addition, he wanted, as almost every parent in similar circumstances wants, he wanted to make sure it didn't happen again. So he was looking for an element of change, to make sure that this didn't happen again and, to the extent he could, to kind
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of broaden that to make sure that similar errors didn't result in harm to future children. And because he was a nurse, he had some unique perspectives on that, in the sense that he had a few more tools than the average client to really assess what was really achievable and what really could be done to prevent future injuries. So that was the third thing. I think, fourthly, that there had to have been an element of retribution, that he wanted to see some accountability on a personal level, on an individual level. So here is this kind of global view of the four things he wanted to accomplish. So how is he going to accomplish that? Therefore, we talked about complaints to the Colleges; that was really where individual accountability was going to come. We talked about a coroner's inquest; that was really system accountability, and it would also serve to provide some answers. And then we talked about the need for representation at the coroner's inquest .what you can realistically hope to get from the coroner and how difficult it is to get an inquest
As John already knew, the College hearings would be held behind closed doors; he and Brenda wouldn't know their outcomes until after the fact. In the case of the College of Nurses of Ontario, the typically slow process would be further complicated by John's additional complaints: subsequent to his initial filing, John had added more than thirty new charges, each of them based on his analysis of Claire's chart. Any possibility of a coroner's inquest would be contingent upon the results of the regional coroner's report another long, slow procedure which was also pending. And, finally, as Paul explained, even under the best
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of circumstances, it would take several months to conclude the civil lawsuit. The good news was that Paul offered to assist them in all of these other proceedings. The bad news was that, despite everyone's best efforts, the net result for John and Brenda was a lot more waiting.
It was impossible for John to sit back idly until all these events unfolded at their own pace, but what could he do? How could he keep things moving forward? He began to think about the potential impact of contacting the media. Despite Paul Harte's advice "Wait till after the College hearings," "Wait till the lawsuit is settled," "Wait for the coroner's report" the wheels were already turning. "Paul didn't want to go down that road," John explained, "but it had to be done. We couldn't sit on it much longer. We just knew we needed to get public about it." At the same time, John took it upon himself to stay in close contact with Hamilton Health Sciences, assuming a kind of dual identity: part watchdog, part agitator. Through what became an ongoing series of e-mails primarily with Margaret Keatings and, to a lesser extent, Andrew McCallum he intended to keep the hospital well informed about his activities and observations. It seemed that every time the subject of medical disclosure or patient safety came up in the news media, in the medical journals (whether Canadian or American) John had something to say and, indeed, some new question to ask that would link it to some
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aspect of HHSC policy, if not to Claire's case directly. Was John trying to be a thorn in their side? Unquestionably. "I just kept hammering away at them," he said, "about accountability and responsibility." But something quite remarkable came of these salvos. John's queries and comments, barbed or otherwise, were always answered. And as a result, his e-mails, and the responses they elicited, became part of the process, part of his mission. Over time, it was through these exchanges not from the hospital's formal apology, not from its carefully worded official statements and letters that a truly meaningful and beneficial dialogue began to form. As all these things were unfolding, another presence was making itself felt. It was Claire's spirit. For some, it was her memory, the palpability of her absence, that was with them constantly, but beyond this it was Claire's vitality, not her death but her life, that lingered on. The essence of this little child continued to affect people young and old, from near and far and inspire in them the desire, the need, to do something special, something life-affirming, in her honour.
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the O ne of aboutpeople who saw the Hamilton Spectator's story Claire was Reg King, a retired businessman. He promptly sent a copy to his daughter Susan, a communications consultant based in Ottawa, who at the time was working on a major public awareness campaign on organ and tissue donation for one of her clients, Health Canada. The centrepiece of the campaign was an eight-page newspaper supplement, which was to be inserted in major English and French dailies across Canada in late April. As Mr. King expected, Susan was captivated. "Like so many others," she explained, "I was deeply moved by Claire's story and shared the item with my colleagues, urging that we approach the Lewis family for permission to run it in the supplement." John and Brenda agreed without hesitation. When readers came to the insert tucked into the middle of the paper, they were greeted by a huge, striking photograph of a pretty little girl dressed like an angel. It was Claire, in a
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sparkly white gown, standing in her mother's garden. The picture had been taken by Jesse, and the costume design, Jesse explained, was a collaboration between the two sisters.
Our babysitter that we used to have was a dancer; and the dress she was wearing was hers. And she'd left a few of her costume things, and we were dressing up and everything, and I said, "Oh, I know, we can dress you up as a fairy or an angel." So me and her cut out the cardboard wings, and we had pastels, from Christmas, and we coloured them white, and we put sparkles on them. And there was this old necklace that was with the costume that I put on her head, that was my mom's. We always used to do things like this. We used to make up dances to music, and dress up, all kinds of dress-up. And I'm like, "Mommy, can I use your make-up?" She said no, and I did it anyways, and then I went out and just took the picture.
The picture, along with the title, "Touched by an Angel," took up three-quarters of the page, and Claire's story filled most of pages z and 3. In addition to reprinting the Spectator feature in its entirety, the supplement included several of the readers' letters that the Spectator had run in its editorial follow-up. The story generated the same response as it had from readers in the Hamilton area but on a far larger scale: this time, instead of reaching thousands of people, it was read by several million. Not long afterward, Susan King called John to tell him that the supplement had been one of Health Canada's most successful public awareness initiatives, and that Claire's
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story in particular had struck a chord with many readers. People wrote to their local newspapers in virtually every region of the country. Provincial agencies reported an immediate effect in donor registrations, and to a large extent Health Canada also attributed this increase to the emotional impact of the story of Claire and her family.
Shortly after the Health Canada supplement appeared, Brenda began to visit the garden she'd planted in the previous fall at Norwood Park Elementary, Claire and Jesse's school, just after Claire died. Claire had a special affinity with nature, with all living things. Here was a girl, John once told me, who would stand on the wooden sidewalk that ran alongside the marshes at Hamilton's Royal Botanical Gardens, and, when the chickadees saw her they would land on her hand, and she would feed them sunflower seeds. ("Eighteen in one day!" Claire wrote in her diary following her last visit there. "They must like me.") Claire also loved butterflies. This would be a butterfly garden, Brenda had decided. And they had filled it with flowers and shrubs that were irresistible to butterflies: butterfly weed, butterfly bush, phlox, echinacea, lavender, and a dozen varieties of colourful perennials. On Claire's birthday, John and Brenda visited the garden and installed a disk of pink granite, on which was inscribed a monarch butterfly. The stone had been purchased through contributions from Norwood Park's Environmental Club. The club had raised
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some money from a bake sale on Earth Day; they'd planned to plant a tree on the school grounds but they chose to do something for the renewal of the butterfly garden, "in Claire's memory." Soon afterward, the club made another contribution, toward the purchase of a yellow flowering magnolia tree, which had been planted adjacent to Claire's garden. This variety of magnolia is also known as "butterflies," so named for the shape of its flowers. Another gift to the environment was donated in Claire's memory by her piano teachers, June and Verna Caskey. In their card to the family, they wrote, "We know how much Claire loved animals, so we want our gift for her to be the preservation of wild animal habitat. In remembrance of Claire, we are going to purchase, through Nature Conservancy of Canada, four acres of precious wild land that will give many plants, animals and birds a place to live long into the future." (Brenda was later informed that June and Vera Caskey had in fact purchased eleven acres.) There were more trees to come. In Newfoundland, John's niece, Emily Sopkowe, had spoken of Claire to her father-inlaw, a doctor, also named John Lewis. Through his involvement in The Canadian Physicians for Aid Relief, Dr. Lewis and his wife arranged to have 120 trees planted in Claire's honour as part of a project to reclaim soil and hold groundwater for an impoverished African village. A friend of Brenda's, Mila Khayutin, made a donation to The Jewish National Fund of Canada, which finances a variety of land reclamation and reforestation projects in Israel. As a result, a tree was planted in Claire's honour in the Yitzhak Rabin
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Park in Jerusalem. And closer to home, a flowering dogwood tree was planted in the Thomas A. Beckett Forest in the Dundas Valley Conservation Area. This tree was purchased by a group of nurses from three of the wards in which John had worked at Henderson Hospital. The tree was planted on Mother's Day, and the Hamilton Spectator? now an ardent supporter of the family after their work for organ donation awareness, was on hand to cover the ceremony. John and Brenda each took the opportunity to focus not on their loss, as Brenda put it, but rather "on the beauty of what Claire brought into our lives and what I think all children bring to our lives." Reporter Brent Lawson wrote that John said "his family has been helped by the examples of other families who have faced tragic losses." John cited the example of Priscilla de Villiers, whose eighteen-year-old daughter Nina had been murdered; Mrs. de Villiers went on to form CAVEAT, Canadians Against Violence Everywhere Advocating Its Termination. "And I look at an organization like Mothers Against Drunk Driving, which grew out of a horrible, tragic death." He referred also to the slain teenagers Leslie Mahaffy and Kristen French, whose families had "carried themselves with dignity and grace."
Many people hoped that something positive and meaningful would come from Claire's tragic death too. One of the first to try to make something happen was Karen Moncrieff, an assistant professor at McMaster University's School of
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Nursing. She met John in the spring of 2001, when he was one of three students she was tutoring as part of a public health nursing assignment. She didn't know John very well, but near the end of their project, in late August, John told her about Claire's upcoming operation. From that time on, Karen could see his manner changing by the day. "There was a shift in him. He became very concerned; the preoccupation became palpable." Not long afterward, Karen also met Claire, when John took her with him to the university. Karen was stunned to hear, just weeks later, that Claire had died. She attended Claire's funeral, accompanied by Sharon McKinnon, a public health nurse who'd worked on the project with her and John. Once again Karen was deeply moved, and the feeling stayed with her. "I remember thinking one day, 'Well, only time will heal,' but then I thought that's a phrase we use at a time when we feel powerless, when we feel there's nothing we can do, and it keeps us from doing things." She did want to do something for Claire and for this family. "So I spoke to Sharon McKinnon, and also another colleague at the university who happened to know John, and I just said, 'What if ... what if we created something?'" Sharon wanted to help, and so did their other colleague, Lynne Miles, a nurse who'd met John briefly when he was teaching at Mohawk College. Soon they were joined by a personal friend of John's, John McGuire (known by one and all as "Doc"), an estimator for an industrial fabrication firm in Simcoe, about an hour southwest of Hamilton. Doc responded to an e-mail that Karen sent simultaneously to
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several people, most of whom she'd never met. "She asked if I would be interested in getting together to see what we could do," Doc explained. "I mailed back right away that I was in." One of the next to join was Paul Reimens, a colleague of John's from his music days, who is co-owner of Hamilton's Grant Avenue Studio, made famous by producer Daniel Lanois and his brother Bob, who'd recorded such major international artists as Uz. Paul's first contribution was to make space available for them to hold the meetings. The group met informally, every few weeks, at the studio. Initially, the plan was simple: "At that time," said Karen, "it looked like we'd have a run and raise some money in memory of Claire. People seemed to think that worked, but the more I thought about it, and also in keeping with some of the values that I heard John discuss, it was about children who had a passion and a love, as Claire did. And then it became about art." The next step, deciding how to give the project an art focus, seemed obvious. Wasn't John formerly a musician? Hadn't Claire herself been an accomplished pianist? And did the group not have access to a world-class recording studio? Maybe they could bring Canadian musicians together for a recording session and perhaps even do a festival. Maybe they could convince some major artists to donate one of their songs to include on an album. And what if they got Claire's classmates to record a song or two wouldn't that add a unique flavour, a special new meaning? Several meetings later the group decided to ask John and Brenda if they might like to meet with them and hear what
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they were doing. Doc put in the call to John, feeling a little apprehensive about broaching the subject. "We didn't want them to think they had to go along with it just because it was started. It was also a little weird because I had been going to the meetings and not saying anything about it to John and Brenda when I spoke to them on the phone. Just cautious, I guess, about their feelings." John and Brenda were surprised to hear about the project but totally receptive. "It was nice," Brenda told me, "because they were all either friends or acquaintances. It was also kind of overwhelming, because we had not gone anywhere that far in our thinking. We were still pretty deep in shock and grief, so it was pretty overwhelming that these people got together and were thinking about this. I think it's really important to try and honour someone's life and remember them in that positive way." Like most of the others, John and Brenda were very enthusiastic about a music project, even though it hadn't yet been fleshed out. "I don't think that they'd put anything together. We hadn't gotten that far. The initial idea was to do something musically, maybe put out a CD or something, to fund-raise, but it was just a very sketchy idea." To help the group organize their ideas, Karen called another musician, the singer-songwriter Ian Thomas, one of the pioneers of Canada's fledgling pop music scene in the late '6os and early 'yos. More recently, Ian had also worked closely with charitable organizations in Ontario and across Canada. He could provide valuable insights, Karen felt, not only on how to get musicians to participate, but also on the
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whole area of fund-raising, which no one in the group had done before. Ian, who also knew John through his music, readily agreed to talk with them. They decided that he and Karen would meet with John and Brenda at their home. As they sat over coffee and tea at the Lewises' kitchen table, Ian listened attentively as the others described the group's ideas about a music project and about donating the proceeds. "Originally," Brenda said, "I think what everybody had been thinking, and talking about, was that this should be for organ donations, because she'd been an organ donor." But Ian saw things differently. "He looked at Claire's artwork, and he was really wowed with her paintings. He said, 'You know, she's already done her bit for organ donation, and that part, sadly enough, is all about her death. I see something to honour her life, and what she was about, her expressiveness. I see a very creative, artistic child here. Why not make it for art? Because that was her and why not do it for kids?'" What Ian was proposing was a very different direction indeed: Instead of raising money and simply handing it over to one of the established institutions, why not do something independently, something dedicated to children. John laughed as he recalled lan's challenge to them: "He said, 'You can take this money and throw it all into the big vat, or . . . you could do something on your own, put it back into the community, into the arts, something for children.'" The idea seemed to crystallize everyone's thinking. "We liked that immediately," said Brenda. "It sounded right." It would be much harder to organize, Ian cautioned them but,
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in his view, much more fulfilling and certainly far closer to Claire's own passions. Soon they took the concept a step further: Why not aim their efforts, and the money they could raise, toward those with the least exposure to art and the fewest opportunities to experience it. "It's about the kids that John and I had seen in downtown schools," Karen explained, "kids who maybe go to school without lunch for a week. This was about 'Who was Claire?' It was about getting her generosity of spirit back into the community." The project now seemed to have found a clear direction and a compelling vision: using the arts, and relying on the help of artists themselves, to raise money to bring the arts to underprivileged children. This concept took the group well beyond the domain of fund-raising alone: soon they'd need a formal structure, a business plan, a marketing strategy and considerably greater resources than the group actually had. On the other hand, the concept was unique, exciting, and, to arts-minded people, virtually irresistible. It was also very timely: years of government funding cutbacks (certainly in Ontario if not across the country) had drastically reduced the availability of the arts not only in cultural venues but also in education; only the most affluent schools were able to sustain their arts programs to any meaningful extent. Everything about the idea, just as Brenda said, felt right, but, while their vision for the project inspired everyone in the group, it didn't quite compel them to leap into action. The meetings continued, the discussions evolved, but something else changed. By the early summer, John and Brenda were attending regularly, and their presence changed not only the
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tone and dynamics of the meetings but also the agenda. It became less important to accomplish concrete tasks and more important to just sit together and talk or not talk. Doing, as Karen put it, mattered less than "being" that is, being there for John and Brenda. "Doing may come out of it," Karen explained, "but I wasn't attached to it looking a certain way, or that we'd have an album, or a concert, or a dance, or a chocolate bar fund-raiser. It was looking at them every time, moment to moment and seeing what they needed and just moving with it." Jim Moore, Karen Moncrieff's husband and another of the group's founding members, admitted that the lack of progress could at times be frustrating but that this was a small price to pay for what the meetings gave to John and Brenda: "The real and unstated purpose of those meetings was to create a safe and welcoming world for John and Brenda, whose world seemed in a continual state of disintegration. As it turned out, we brought them into our lives at a time when so many other friends and associates seemed, to them, to be abandoning them. We provided a place to express, and be with, their grief, which is all that really mattered at the time." Brenda described the experience of those initial meetings as a kind of lifeline.
Part of it fed this need for John and I to be supported. It allowed us to go to a place and be with people we were comfortable with, and where it was okay to grieve, or to talk about our grief, or to talk about how we felt. Because people weren't uncomfortable with that; people weren't uncomfortable with talking about
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Claire. So it was a nice not an escape, really, but just a place we could be ourselves, outside of the "real world," which really expects you to get back into step pretty quickly. People stop asking you how you are, and people don't want to talk about what's happened to you.They don't want to talk about your child anymore; it becomes like that child never existed. And when I talk about hen like if I mention her name at work, I can feel people tense up.
If the meetings became less productive, they also felt more fulfilling, not only for John and Brenda but for everyone. "Working with the group has been good for me as a man," Doc said. "It helped me to focus more on the important things in life. Family, love, caring, and respect. I always felt better after a meeting with those guys." Jesse made a special contribution too. One night, as sh and John were browsing through various nonprofit groups' web sites, they started talking about giving their group a name. Jesse wanted it to say something about hope "not just for grieving families, but for everyone," she explained to me. "I didn't want it just to be about hope for people who've lost a child or a sister or brother but hope for everyone, that there's always hope, always a time when hardship and pain will end." Looking for a way to capture this idea of the permanence of hope, its ongoing presence, Jesse did an on-line word search, and of the dozens of words that came up the one that stuck with her was "revolution" like the planets around the sun, Jesse thought to herself, which are constantly revolving but always there, even when you can't see
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them. "Let's call it Revolution Hope," she said to her father. John liked it too. At the next meeting, it was presented to the group and adopted officially: Revolution Hope: The Claire Lewis Foundation. Around this time, Jim Moore, who runs a software development firm, was putting the finishing touches on a web site he had developed for the fledgling organization. "Its purpose," Jim explained, "was to tell Claire's story, describe Revolution Hope, and suggest ways that donations might be made." To Jim, the site was simply a basic prototype, a starting point, but when John and Brenda saw it they were deeply moved. "I'll never forget John's reaction," Jim said. "He seemed very touched. I think the site made it something concrete for the first time." A final touch of inspiration came from Claire herself. Recalling one of Claire's poems, Brenda suggested that they incorporate one of its lines. It worked so well with both the name and the spirit of the fledgling institution that they adopted it as a kind of motto, the Revolution Hope credo: "Have hope and the stars will keep shining."
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he Revolution Hope meetings were helpful, meaningful, but they didn't satisfy John's restlessness. There seemed to be little he could do to move Claire's case forward more quickly: the civil suit was just beginning; the College hearings hadn't been scheduled; the coroner's report was still not completed. But he could not sit idly by watching as all these procedures unfolded at their tedious, maddeningly slow pace. John decided he should learn more about medical error. He wondered how many errors resulted in death. He wanted to know what was being done to prevent them. Karen Moncrieff referred him to a friend in Toronto, who in turn recommended that he talk to another colleague, Dr. Philip Hebert. Dr. Hebert is an Associate Professor of Family Medicine at Sunnybrook and Women's College Health Sciences Centre in Toronto, where he also chairs the Research Ethics Board and acts as an ethics consultant. All but unknown two decades ago, bioethics has established an increasingly prominent role in contemporary health
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care. "Part of that," Dr. Hebert explained, "was philosophers saying we have something to add when it comes to medical problems knowing whether to put someone on dialysis, or to stop dialysis, or who should have a heart transplant, or who's dead and who's alive. It's not the same as asking cardiologists, 'What's the right dosage of digoxin for heart failure?' This is a different sort of question. It's a question that requires moral thought and input." Ethicists can also provide assistance to patients. "Often we're involved in situations of ethical difficulty, not because we have any brilliant solution to the dilemma, whatever that may be, but we can be sort of an independent ear. It's sort of a psychotherapeutic role, in a way not doing psychotherapy per se, but just to provide some kind of independent ear to the situation." A sympathetic ear, particularly from within the health care community, was exactly what John needed. Dr. Hebert was the first independent medical professional he spoke to about Claire, and except within a small circle of friends and family he'd rarely spoken about their case with anyone. Their first meeting was taken up almost entirely by John's account of what had happened to Claire and what had transpired since then. Dr. Hebert spent most of the time listening to John, hearing him out. "There was anger; there was disappointment on his part, obviously, as it would be of any parent who had lost their child. At that point, the grief was palpable." They also talked about how Dr. Hebert might be able to help. The first thing Dr. Hebert offered was moral support.
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He strongly encouraged John's efforts to move the case forward. "I think I would have suggested that to him as well," Dr. Hebert told me, "that this is obviously a situation of gravity and seriousness, that couldn't be ignored, that needed to be followed through." He also pointed John to several sources of pertinent information. "I felt he needed a way of finding whatever possible good could come out of this loss, so I suggested that here was some stuff he could look at to put it in perspective." The most insightful, and most disturbing, of these sources were two major studies undertaken in the United States. The first was a 1991 survey, the Harvard Medical Practice Study, which analyzed the incidence of medical errors by looking at patient records from the 19808 at fifty hospitals in New York State. This study found that adverse errors occurred in three to four percent of hospital cases and that one patient in 2,50 died as a result of such errors. Putting the issue into perspective, one of the Harvard study researchers later wrote (in a 1994 article in the Journal of the American Medical Association) that in icus errors occurred on average twice a day. This, he noted, "translates to a level of proficiency of approximately 99 percent. . . . If performance levels of 99.9 percent substantially better than those found in the icu applied to the airline and banking industries, it would equate to two dangerous landings per day at O'Hare International Airport and 31,000 checks deducted from the wrong account per hour." The second major study began in 1997, when the Clinton administration commissioned the Institute of Medicine (IOM)
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to study patient safety and quality improvement issues on a national scale. On the study's completion in 1999, President Clinton subsequently established a task force to -coordinate federal initiatives and develop a strategy "to identify prevalent threats to patient safety and reduce medical errors." The task force's report, submitted to the president in 2000, began with a summary of the IOM study and its implications for the American health care system:
To Err is Human: Building a Safer Health System, a report released late last year by the Institute of Medicine, shocked the nation by estimating that up to 98,000 Americans die each year as a result of preventable medical errors. The Institute of Medicine's report estimates that more than half of the adverse medical events occurring each year are due to preventable medical errors, causing the death of tens of thousands.The cost associated with these errors in lost income, disability, and health care costs is as much as $29 billion annually The consequences of medical mistakes are often more severe than the consequences of mistakes in other industries leading to death or disability rather than inconvenience on the part of consumers underscoring the need for aggressive action in this area.
The stunning implications of the IOM study triggered similar studies in several countries. Philip Hebert participated in the discussions that led to a Canadian patient safety study (launched in 2001), and he has kept abreast of patient safety research throughout the world. "Every study shows a very similar trend," he explained, "of a hidden epidemic of error
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in every country that's looked at it. We haven't done it in Canada yet, we're doing it at the moment, but every other country Australia, the U.K., Denmark shows a rather distressing high incidence of medical error." Reports like these only furthered John's own distress and his cynicism. "I guess it just opened my eyes to how dangerous hospitals are." At that time, there were no medical error statistics available for Canada, but it was common practice to extrapolate from the U.S. example: If there were an estimated 44,000 to 98,000 preventable deaths in American hospitals, which the IOM described as "a national problem of epidemic proportion," the problem in Canada would be no less alarming. "About ten thousand people die each year in Canadian hospitals as a result of error," John pointed out. "That's an awful lot of people an A3 2,0 Airbus crashing every week, that's the analogy, with all on board killed.3' "That's the reality," said Dr. Hebert, "and unless we do something about it patients are going to go on being harmed; people are going to die needlessly." John took this grim prospect a step further: What about the preventable deaths that went unreported? How many might there be? How many doctors and nurses were not reporting their errors and what was being done about it? It was this very issue, the ethical and moral implications of nondisclosure, that led to the involvement of bioethicists. "Quality improvement can only happen if you know about the bad events," Dr. Hebert noted, "but if health care professionals cover up an event it's not in the chart." Getting
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people to step forward, however, is neither simple nor straightforward. "It used to be it was hard for physicians to tell people they're going to die, breaking bad news. This one is really hard, because now you're going to say, 'Your relatives died or were harmed because of what I did or didn't do.' That's doubly difficult. It's not only a tragedy your relative has died but the other thing is it's because of me." Apart from the moral aspects, the legal ramifications of disclosing error pose another obstacle. If anything, the system seemed to encourage nondisclosure, if only to reduce any real or perceived exposure to liability. "That was the understanding for many health care professionals," said Philip Hebert, "that when I make a mistake the first thing I do is call my lawyer, call my professional malpractice insurer, before I talk to anybody. And the view was that the insurer is going to tell you to shut up, don't talk to anybody about it, we'll handle it. In fact, if you do talk to anybody, you may lose your insurance coverage/And then there's institutional interests. Institutions don't disclose either. Institutions have their own interests in these cases, and it can be hard for them to own up." Bioethicists provide guidance and policy direction to health care practitioners and administrators, but, like all health care professionals, they too have a responsibility to patients and their families. Philip Hebert argues that the best outcomes occur when the interests of patients and their families are the first priority for all concerned. He cited an example that he'd seen first-hand, in a case at Sunnybrook Hospital in the mid-1990s that involved the family of one of his own patients.
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We met with that family and their lawyer; without a lawyer on our side, and answered every question they had, within a couple of days of their daughter's death. I didn't have all the answers, because I didn't know exactly what she died of.The outcome was that the lawyer didn't think there was anything there to pursue, that we showed due diligence, she was examined properly it was an unfortunate outcome and probably not preventable. And I remember the lawyer saying, "If everybody was as open as you were about events, I wouldn't be seeing half the lawsuits that I see." Because it may be that nothing wrong was done, but if the family feels something wrong was done, and then they see you're not being open about it, they're going to go after you. They're going to say'Those guys are covering something up."
John was impressed with the story, but it gave him little comfort. Based on his own experience at Hamilton Health Sciences, he viewed Dr. Hebert's example as the exception, not the rule. "Because of the way they treated me, and the way they treated this death, the way they tried to come across basically, 'We had nothing to do with it, no wrong on our end,5 all that stuff." The statistics and research studies seemed to support John's scepticism too. It might well be that a majority of physicians do disclose their errors, but in John's view the minority was far too large, and the consequences of their silence too devastating, to be ignored. Dr. Hebert pointed out that other studies, regrettably, had confirmed this suspicion. "When given hypothetical cases, sixty or seventy percent will say they should be informed.
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Well, that means there's a sizable minority, thirty or forty percent, that say patients don't have a right to know about it."
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John soon learned about more cases that were all too similar to Claire's. The first of these came one evening in late April, when he received a phone call from Donna Davis from Carievale, a small town in southeast Saskatchewan about three hours from Regina. "It was just completely out of the blue," said John. "She was crying, really upset." As Donna explained to me, she had just read the Health Canada supplement, and she wanted to talk to John about her son, who had died just a few weeks earlier. He, too, Donna told me, was an organ donor.
After Vance died, I was having trouble sleeping at night, and the Leader-Post papers had piled up at home, and so I got up one night, and I opened up the paper; and there in the middle of it was an article on organ donation. We had donated Vance's organs, and we were having problems with that decision that we had made. You know, you sort of have second thoughts, and I just thought I would really like to talk to somebody else about it
"She knew the hospital made errors," John recalled. "That was one of the first things out of her mouth, that they screwed it up. She was a nurse, and she knew exactly what happened." It came as a shock to both John and Donna, but for Donna the similarities between their experiences also served
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as a kind of validation. "It was devastating," she said, "and yet in another way it was 'See? I told you so.3"
I knew there was something wrong. I knew that this happened. When your child dies and you think that it's because of somebody else's actions or nonaction, you think, okay, is this just the grieving parents? Because we got told that lots. "Oh, well, you're just looking for a reason, you're looking for someone to blame it on."
In the early morning hours of March 27*, zooz, nineteenyear-old Vance Davis lost control of his truck; it rolled over and went off the highway. He was able to call for help not to 911 but directly to the RCMP'S call centre in nearby Carnduff. He called two or three times in his last call to them, he said, "I'm cold. Where are they?" but the RCMP didn't respond immediately. When they did arrive on the scene, Vance wasn't there. Presuming, as they later told his parents, that he'd just "got scared and was hiding at a friend's," they made little effort to find him. And they didn't inform his parents of his accident, or that he was still missing, until ten o'clock the next morning. Donna Davis called several of Vance's friends, to no avail, but she knew that if he was all right he would surely have called them. Jack and Donna organized their own search, assisted initially by friends and neighbours and, later that night, by the RCMP. They found Vance on Saturday morning, in an empty trailer, where he had lived a year earlier. They
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rushed him to the hospital. This should have been the end of the nightmare, but, as Donna recounted to John and later to me, it was just the beginning.
We took him to the local hospital first, and then on to Regina, and the doctors there, they just weren't listening. He had a terrible, terrible gash on his head, and they kept him out on versed [a sedative] because he was so combative. They had him restrained a four-point restraint, which is both arms, both legs and three security guards in the room. Because with his head injury he was so combative that they had to keep him sedated. And they did not listen.They never asked us once what had happened. And then they attributed his behaviour to alcohol. Well, this is thirty-six hours later The alcohol would be out of his system anyway. But they just were not listening. On his chart, we saw afterwards we got his chart after they had "ETOH" in big letters, and highlighted, and that means ethyl alcohol. We had told them there was no alcohol involved, and they kind of just shrugged their shoulders.
Vance was admitted to the Regina General Hospital's icu and placed under the care of an intensivist. There was a neurosurgeon on call, and on duty in other wards throughout the weekend, but despite Vance's serious head injuries he was never called. The next day Donna and Jack saw that Vance's condition appeared to be worsening, but their concerns were ignored.
"Quit worrying. It just takes time.'That's what they kept telling us
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over and oven He was having these long periods of apnea, and I pointed that out to the nurse, and she told me, "Oh, well, you know how the divers reflex? They can hold their breath for so long before they have to take a breath." I'm like, "What does that have to do with someone that has a head injury?" I mean, Vance has never done any deep-sea diving or snorkelling in his life. What does that have to do with anything? And his heart rate was going way, way down, like to thirty-eight, which is an indication of brain swelling. The breathing and the heart rate are a clear indication that something's going on in the brain.
On Sunday evening, it was decided that Vance would be moved from the icu to one of the regular wards. "They brought a bed down from the ward, and they made him walk from one bed to the other. After they came out, to wheel him up to the ward, he was whimpering and crying in pain." Donna joined him, intending to remain with her son for the night. Before long, she again became alarmed over his symptoms. Once more she was told not to worry. "It's just that he's had a move," said the nurse. Moments later Vance began to convulse. "He looks like he's having a seizure!" Donna exclaimed. "Oh, it's just from moving him," the nurse repeated.
They more or less told me that I was just being silly, that I was making too much out of nothing, that it was just going to take time. So I went back to the hotel room this was probably I 1:30 at night and then I got a phone call at 2:30, 3:00 in the morning, saying that they were taking Vance to the CT scanner. I
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rushed to the hospital, and he was I don't know, they won't tell me exactly when he became brain-dead, but
The on-duty respiratory technician, a student, was unable to get Vance mtubated, nor could the doctor. After several failed attempts, they called in the anesthetist. "On their sixth attempt, they were finally successful in intubating him. Then they called the neurosurgeon that was on call, and that was the first [time] that anyone had seen him since Thursday." The OR and operating staff had been booked, but the neurologist, after reviewing the CT scan, determined that it would be better to wait until the morning. Vance was brought back to the leu.
At five o'clock, I .said I wanted to go see him, and I had talked to the two nurses that were on in SICU again. The one nurse was still there that had discharged him, and I said, "I don't feel good about this.They shouldn't be waiting to operate, they should be doing it now.'They told me he was starting to come back. He had purposeful movements after they had given him Mannitol, which is a drug that decreases swelling in the brain, and he was coming around, Well,.when we went in there at five or quarter after five, he had crashed again, and I said, "Get that doctor, and you get him here now." All of a sudden they're rushing around, trying to get the, OR team, which they had called and were ready, at 2:00, 2:30, 3:00 in the morning, and now they have to do it all1 over again. So, consequently, he didn't get operated on until 8:30, and by then it was too late. He had a' catastrophic event, in his room, while I was
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watching. His blood pressure went up to like 250 over 150 or something. His .pulse went to 155, 160. He probably stroked out right then, that's probably what happened. Had he been in the OR earlier, that wouldn't have happened.
The parallels between the two families' tragedies didn't stop there. As John sat listening in horror to Donna, she began to talk about the hospital's deathly silence. "The hospital hadn't spoken to them," John said. "It was just silence between them, which is typical. They had one meeting with them, the usual follow-up on a death, and it just went terribly for them, it went absolutely nowhere." The silence started the moment Jack and Donna left the operating room.
After that, again, we went to the little room. Other than the time they came in to tell us that,he was brain-dead, we never had one staff member come in and ask us if they could do anything for us. Nothing. Absolutely nothing. They didn't want to deal with us. After they knew it was pretty much oven they wouldn't have nothing to do with us.They absolutely, totally ignored us. I wrote to them asking what they had done, what they were going to do, where I saw the downfalls, and all we got was a letter back, very tersely saying that no further communication would be accepted from us to them, except through the lawyer.
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Donna's phone call to John was filled with emotionally charged pauses, and when she finished telling her story there was a long silence relief, on Donna's part, and shock and disbelief, on John's. But Donna wasn't calling simply for consolation. "She was wondering what to do," John said. "At the end of the conversation, it was 'What do I do now?'" He suggested that, as a starting point, she and her husband should file complaints with the Saskatchewan Colleges. He also invited her to call him if she thought there was anything he could do to help. He and Donna exchanged e-mail addresses, and soon all four of them were communicating regularly. "When Donna and I talk," Brenda told me, "it's about the emotional stuff, and I think when her and John talk it's a lot about the medical stuff, the hospital stuff. I think she's very isolated. They live in a very small community. I think in a way they almost feel, not shunned by the community, maybe that's the wrong word, but, you know, you do feel apart from other people when this happens, you just feel different." Donna described her connection with John and Brenda as a lifesaver during one of the most trying periods of her life.
It was wonderful having somebody to share it with, you know? To know that we weren't alone in this, that there's someone else that had been through it Not that you would ever wish this on somebody else, but it was a reaffirrnation that we weren't just looking for someone to blame. Because you do definitely get that feeling from everyone. That you're just looking for someone to blame. "There really probably wasn't anything done wrong, but if that
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makes you feel better then you go ahead." That was the kind of condescending attitude from family and friends.
John contacted another couple later that summer, Chris and Susan Atkinson, who live in Hampton, New Brunswick. He called them after hearing about their plight on a news program. That story focused on the family's efforts to have the Chief Coroner of New Brunswick reverse his decision and call an inquest into the death of their little girl. "John managed to find our number and basically called us up out of the blue," Susan Atkinson told me. "He was calling to ask what we did, what the process was that we had to go through, to get our inquest."
At one o'clock in the morning of February 9*, 2001, sixyear-old Ashley . Atkinson was rushed to hospital by ambulance after a severe croup attack left her unable to breathe. She'd had two other attacks during the previous year and a half, both of which had been treated effectively at the emergency ward; this attack was far more severe, yet at no time did anyone consider it life-threatening. Ashley continued to have great difficulty breathing, and at one point she coughed up a small amount of blood-stained phlegm. The on-call pediatrician and ear-nose-throat specialist were called in to examine her. "They said they would
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prefer that they put her on a ventilator," Susan explained, "because she was having such a hard time breathing, and it takes so many muscles for your body to breathe, that they were worried that she was going to get tired, and when kids get too tired they will just suddenly crash." Ventilators are frightening machines, and the procedure having tubes inserted down the throat and into the lungs is both painful and highly disorienting. Like most children, Ashley resisted the physicians' attempts with all her strength. "They couldn't get her sedated. They couldn't get her settled down. So that's one of the issues that comes in the whole care and treatment of our daughter the drugs they had used initially, and what they continued to use, to keep her sedated." When the drugs listed on the ER'S standard protocol f sedation didn't work, the on-call anesthesiologist was summoned. He prescribed a drug called propofol, the use of which for children is, at best, highly controversial. The propofol did help calm Ashley down, but she remained restless and was showing obvious signs of pain and discomfort. Consequently, more drugs were administered, and thus began the vicious circle. "They also had her on morphine," Susan explained, "because the anesthetic drug, that's all it is so there's no pain comforting in that drug so the morphine was to alleviate any discomfort from being on the ventilator."
We were told it's a minor dose, not that much, but even with all that they also eventually had to start giving her a paralytic drug, because they had her on a certain dose of the anesthetic, and on
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the morphine, which also has some qualities of sedation effects, but she was still waking up. She would still move, or kind of like come and go, A nurse would come over tq do suctioning.in her tube for her ventilator, and it would just put her through the roof, She'd try to sit up and try to pull the tubes out, and this is all while being, sedated. So the sedation level would go up, and she was on a paralytic, so she was paralyzed, sedated, and drugged with morphine. A six-year-old.... And when you're sitting there watching them pump that amount of drugs to keep a child sedated, you start to wonder And then you start to get a little nervous when you have a nurse that comes oven treating her; saying like, "Geez, this must be one strong little kid. She's getting enough to put an adult out."
On Friday, Ashley was diagnosed with influenza; on Saturday morning, her x-rays indicated that she'd also developed pneumonia. She remained relatively stable during the night, however, and the decision was made to extubate her. They took her into the operating room so that at the same time they could also attempt a bronchial scope to see if they could locate the source of her bleeding. But the extubation failed. As soon as the tubes were removed, Ashley went into respiratory distress and had to be re-intubated. Despite these setbacks and the apparent advances of her illness, the Atkinsons were never informed that there was any cause for concern. "The impression that we got from them," Susan said, "was 'Okay, we're on a ventilator; yes, she's showing signs of pneumonia,' but we at no time got any impression from anyone that it was serious. So we were upset about
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what was going on, but not worried to the point of 'Let's get her out of here, maybe transfer her to Halifax.' We didn't get the impression that they wanted to do that." Ashley's condition continued to worsen. By Sunday night, she was sedated to the extent that she was unable to move at all. "She would get to the point sometimes where she actually did open her eyes," Susan said, "and we talked to her a couple of times, but after a while they just they had her knocked out flat. Wouldn't let her move at all." The head pediatrician spoke to them that night. He explained that they would be extubating Ashley in the morning, and he insisted that Chris and Susan go home to get a good night's rest (they had both been at the hospital since Thursday) so that they would be there for Ashley in the morning when she woke up.
We walked in the next morning around 7:30, because what we would try to do is make sure that we were there during the shift changes of the nurses. Because that's when you get most of your information. They had to update each other on what went on through the night and . . . on what the stats were, and each shift change you got a crash course on how all the monitors worked, what all the readings meant, and all that. So we made sure we were there during the shift change. When we walked in, there were more nurses around her bed than normal, the doctors were all there, and things seemed to be a bit busy around her bed. So we're like, "Okay, what's going on?" Through the night, her temperature had started going up, and she started to have a bit more difficulty with her breathing, and the sedation level went up more, and there were different things that
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were happening that they didn't like. And her temperature was consistently climbing. Her heart rate had gone up, her breathing rate had gone up. Even though she was on the ventilator.
The pediatrician was on the phone trying to arrange for a helicopter to transfer Ashley to Halifax. The earliest she could be picked up was that evening; when her condition continued to worsen, he called again to reschedule, first for 6 p.m., then for noon. When the helicopter did arrive, however, Ashley was too unstable to be moved.
When they arrived, she was in such distress that they wouldn't take her. So they stayed and helped if they could, and waited, to see if they could stabilize her and get her breathing and her heart rate under control and all that kind of stuff, and it just never happened. So all afternoon they were doing whatever they could do, and they wouldn't move her because she was too unstable. And around suppertime that night, she passed away. And basically it was right up until that point I even looked back in her chart to see when it was, because we couldn't believe how long it had gone on it was fifteen minutes prior to her passing away that we were finally taken off to the side and told that she was critical. And that she may not make it through.They waited that long to tell us how serious things were. And that was hard. And here we are, three years later; and it still hurts that much.
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Ashley's chart notes attributed her death to heart failure due to complications arising from influenza and pneumonia. There was no reference to the possibility of any undue effects contributing to the outcome. But Chris and Susan were convinced that there had been serious flaws in Ashley's treatment. That very evening, despite the shock and trauma, they demanded an investigation. "When she had passed away," Susan explained, "we're standing there and asking 'What just happened? We brought a child in here with croup, and four days later she dies. What the hell just happened?' And they're standing there with their mouths open, just as bewildered as we were, and nobody could tell us a damn thing. We were overwhelmed with grief, but so pissed off and mad at what had just happened, and that nobody could tell us why, that we demanded, that an autopsy be done. So that was the start." The Atkinsons also requested an investigation by the local coroner, and while that was under way they carried out their own, beginning with a crash cpurse on the battery of drugs Ashley had received. It didn?t take them very long at all, Susan told me, to discover that their suspicions were well founded.
We had remembered most of the drugs that she was on. and started using the Internet as our tool, looking up information on the drugs that she had been on. We looked up morphine, which was the first concern, found out information on that and then we hit propofol, and when we hit propofol the flags were big and red. Because when we came across some of the case reports and arti-
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cles that were written on the effects that it had on people, and on kids, and some of the concerns that physicians had about it, it was like reading what we had just gone through. And we were like, "Oh, my God. Is it possible that this is what happened to our daughter? Is this what killed our daughter?"
It took eighteen months for the local coroner to complete the investigation. It concluded that an inquest was not justified. Obviously not satisfied with the local coroner's report, Chris and Susan took matters into their own hands. Using the information they'd gathered during their research, they compiled a package outlining Ashley's case and the many unanswered questions regarding the drugs Ashely had been given. The package was mailed out to local politicians, as Susan explained, "to see if we could somehow lobby some help from the political area." At the same time, the material also went to local newspapers and radio and TV stations, and from their coverage the story began to build momentum.
Other people stepped up to the plate and took it. There were two ladies, out on what they call the Kingston peninsula, and they were just appalled at how the government was handling our situation, and that they had refused to give us the inquest to seek the answers and find out what had happened, so they called .us up and said my name is so-and-so, I live out here, and I'm appalled at what's going on and how they're treating you would you mind if we started a petition to gather names in support of helping you get an inquest? I said, "If you want to do that, go right ahead," and that's what they did.They ended up with over a thousand names
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on the petition. And when we had finally gotten our meeting with the minister; there was a whole bunch of people that actually picketed outside of her office while we were having our meeting.
The Minister of Public Safety, inspired perhaps by the public sentiment and widespread media attention, agreed that the Atkinsons had a legitimate case. Would they have succeeded in getting their inquest without all the publicity? Susan has no doubt that the community made all the difference in the world and that they, too, deserved answers. "We had a lot of community support because people were basically like we want to know what happened. And they had every right, as much as we did, to know publicly what had happened. First we have the chief coroner saying 'No, we're refusing you the inquest; we believe all the answers have been found.' But then the Minister of Public Safety turns around and says, 'Well, yes, we're going to issue an inquest because it's just the right thing to do.' So I'm like, 'Okay, if it's the right thing to do, why wasn't it done in the first place? Why did we get a no the first time?'" Susan also acknowledged the valuable role played by the local media in getting their story out. "The media, I would have to say, have covered what has happened to us quite well. When things started to heat up, they were there. I think they did as much pressure, with us, as the public did. It helped because it kept people aware of what was going on."
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In talking and corresponding with Chris and Susan, John was impressed by their tactics as well as their determination. "If you kick away at it, something will happen," he remarked. "Just keep kicking away at it. People can't ignore you forever." John and Brenda were in a much different position than the Atkinsons. Chris and Susan were heading into their inquest, whereas in John and Brenda's case the coroner's investigation was still under way; so, too, the decisions of both Colleges were still pending. The Lewises' inquest, if and when it was called, was much further down the road. All John and Brenda could do was wait and see, hoping for the right outcomes.
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c-naê^^
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it might have was O utwardlywith the world,appeared that Johnsense active, engaged but inwardly his of isolation remained. His writing captures some of the turmoil that continued to dog him through every waking hour and was beginning to drag him down.
I've begun to feel a profound sense of ambivalence towards this event, as if I'm just worn out, exhausted with this grief. I feel physically and emotionally tired all day, no matter how much I sleep. My appetite appears to be the same as before, I take enjoyment with meals, but this deep exhaustion is unrelenting. I find it harder to cry. My mind kind of refuses to go back to the ICU when she died, my mind is saying"! can't go there right now, I've spent too much time there, I need a break." Numbness has descended upon my mood. My emotions have become very "flat," not in an uncaring way or an unfeeling way, but in a kind of out-of-body experience, like walking around in a constant deja vu state of mind. Everything has a certain unreality about it.There is an almost
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comfortable fog falling around me, flattening out the hardness and pain of this grief. I can speak of her in past tense; I can say she died (not passed on, no longer with us, passed away, and other gentler euphemisms for death) and realize it is in fact my baby-child that I speak of. We have her ashes in an urn on the piano, mementos from her service, hundreds of sympathy cards, pictures of her taken only days before she died. I have her hospital band, the toe band from the hospital morgue, I have a copy of her medical chart with the signed death certificate in it, the operative procedures from the organ donation harvest down to the time the ventilator was turned off, time her heart was removed, time her lungs were removed, a plethora of information and facts attesting to her death, yet there remains a certain aspect of unreality to this.There is a dreamlike quality to the very idea she's dead. Reality pokes through occasionally, reminding me of that overwhelming pain but without the same intensity as before. This disturbs me. Am I forgetting her, forgetting the pain I feel for her, forgetting I even had a child like her? Forgetting seems like such a dishonourable thing to do. I hear people say "Time will heal you," "You'll gain closure with time," "Time can heal a broken heart," and dozens more shallow, insensitive cliches. I for one do not want to forget her How can I? She's part of my being, still, and always will be-part of my family. She will always be my child, loved in my heart, my mind, and my soul. Do people with living children forget them overtime? Why should a dead child who is loved and honoured as much as any other family member ever be forgotten? People don't mean to be insensitive; I think it's more fear and ignorance, drawing on past death experiences and trying to apply them to a child's death. I had an older brother die when I was a teenager; a father commit suicide, and a mother die of cancer;
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none of these deaths has any relation to the grief I feel at the death of my child,The pathways through these past grief experiences do not apply to this situation. These people too were my "flesh and blood," it was an extremely painful experience when they died, but again there is no language to describe the grief, loss, and pain at the death of Claire.The situations can't be compared; things I may have learned from past grief work don't apply.This is an unmarked, uncharted journey. This "journey" I'm on has an odd sense of time. Time is distorted, warped, as if I'm living in suspended animation. I am not of this world; the rules governing time, space, and gravity don't apply Recently I stood in a mall packed with shoppers. I stood outside a store waiting for my thirteen-year-old daughter; who was in buying something. I felt as though I was in a commercial I saw once on television, where the subject in the foreground was either moving in slow motion, or not moving at all, while the background became a blur in fast-forward.The world careened out of control around me as I stood frozen and watched, detached, alone, feeling forsaken by the human beings and the activity going on around me. When I saw my daughter, I burst into tears, not the least concerned we were standing in the midst of a busy mall.
In June, John found a new job. Financially speaking, this was a welcome turn of events. His only other employment that year was limited to some freelance research work through McMaster University, and for several months the family's budget had been covered mainly by Brenda's salary plus a
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heavy and very costly reliance on credit cards. On the other hand, the job also marked John's first return to nursing since Claire's death, which, from an emotional perspective, meant that it was uncharted territory. John worked in the hemodialysis unit at St. Joseph's Hospital, another of Hamilton's major health care institutions (but not part of Hamilton Health Sciences Corporation's network). His job involved operating dialysis equipment, which filters and cleanses the blood in patients whose kidneys are no longer functioning., "It's not real complicated work," John explained. "There's just a lot of little nitpicky things you have to learn to do. There's a lot of technology, too, a lot of programming. You're basically turning over eighty to a hundred litres of a person's blood in four hours, so there's things you gotta do, and know, or you'll kill people. And it's really easy to kill them, really fast, so the orientation's eight weeks long, it's pretty intense. There's lots of extra classes besides being on the floor and doing these things, hooking this up, and sticking needles in people." St. Joseph's had arrangements with several other hospitals in the region whereby it shared its resources, including its dialysis system operators. Each hospital has its own dialysis equipment, but only St. Joseph's has sufficient specialized staff. The nurses who travel to the other hospitals to perform the dialysis are called "outriders." John accompanied one of the outriders as part of his orientation. They went to Hamilton General and happened to cross paths with Dr. Peter Kraus, Hamilton Health Sciences' Director of Critical Care. He and John hadn't seen or spoken to each other since
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their disastrous encounter in February. "I was dialyzing a patient in the icu," John recalled. "He came in with a gaggle of residents in tow, and they were doing rounds."
He immediately recognized me, I could tell he recognized me, and it's that immediate recognition. It was a four-bed room, and he went around and did his rounds, and he went by my patient and just nodded and.said,"Mr Lewis," and that was it, And I figured, well, that's the best I'll get out of this guy "I'll just ignore this and pretend it's not happening" which is more brutality, right? And at the end of rounds, he asked the residents to wait for him out in the hall: "Could you clear the room for a moment, please?" And he asked the nurse that was with me during the orientation,"is Mr Lewis okay alone for a few minutes?" And she said, "Yeah, he knows what he's doing, he's fine, I'll go get a coffee," and she left. I was sitting on a chair with the bedside table, writing, and he sat across from me, and he shook my hand, and he was crying. And he said, "Mr Lewis, I'm so sorry for your daughter's death. I never did get a chance to say that to you. And I'm so sorry for that meeting. They never should have put me in that position. I was new to Hamilton Health Sciences, and I was new to the position of Chief of Critical Care.They should have never put me in that situation with you and your wife. I am deeply sorry." He was crying. And he shook my hand, he did one of those with both hands, and he said, "I am just so sorry. I can't tell you how many times I've relived this." It was a really touching moment. And it meant so much to me. It just meant so much that he did that.
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Toward the end of his eight-week orientation, John seemed to be doing well; he was becoming proficient at his work and enjoying it. "I really liked it," he said. "It was really interesting stuff. I really liked kidneys and all that stuff. I worked hard at it and got pretty good at it, good with the needles." From a technical standpoint, he was capable of handling the work long before he completed his training. Emotionally, however, it was another matter. He was working in a hospital environment, again dealing directly with patients, many of them in an intensive care context, and he was keeping his thoughts and feelings to himself.
It was a culmination of a lot of months of trying to walk around like everything's okay. I mean, the last thing we want to be is different. We all want to fit in, we all want friends, we all want to be part of something, we all want to feel we belong and Brenda and I were walking around like we've got a branded, bleeding D on our heads of death, of child death or something branded into our foreheads. So it's kind of this desperation of trying to assimilate and trying to fit in. And working in hemodialysis, I didn't get into Claire's death and all that stuff. I didn't want to spend my time at work talking about this, because 99.9% of the staff were women, young women with children, and older women with children, and I thought I just don't want to spend my time talking about this. And wanting so badly to feel part of something, and to belong, and to fit in.... I spent every break of that eight weeks I'd have two fortyfive-minute breaks and I'd spend thirty minutes of them crying,
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just to get through the shift. And every lunch I'd just quickly eat a. sandwich and... .There's a little chapel around at the front of St. Joe's, and I'd go in there and cry. Because I could sit in there, and no one ever went in there.... So I certainly wasn't fitting in, certainly wasn't assimilating.
It all caught up with John one day in early July. It might have started earlier in the morning, when he and Jesse had been fighting. "We had just taken Jesse to camp that day," Brenda told me, "and for some reason they weren't speaking. He took her to camp, and I was saying, 'You can't let her go to camp for a week and not say good-bye to her,' but he was angry with her, she was angry with him. I can't even remember what the fight was about. We were all so stressed then and stretched so thin." John's shift began at one o'clock that afternoon. The incident that pushed him over the edge came that evening, when he was attending to one of his patients. "She was in her early thirties, and she had diabetes really bad and I got her into a bed, got her settled, got her hooked up and her machine programmed, and about half an hour into it she crashed. She crashed and burned. A couple of days later the family removed her from life support." John knew that she had been gravely ill for some time, and her death was not unexpected, but nevertheless it was a traumatic experience, an all-too-familiar replay of his last moments with Claire seeing her crash, watching her get intubated, knowing that she was only alive because of the machines around her. He did not think he could ever again bear to see such a terrible sight.
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That was it for me. It was the end of my nursing career right there and then. I was really upset That night, before I came home, I did go talk to the chaplain, who was on call, and told her about Claire and this patient crashing on me, and I came home and talked to Brenda about it a bit. I didn't sleep; I was really upset And the next day I just wigged out, man. I was supposed to be into work, and I said to hell with it, I'm not going back there.That was my decision right there: I'm not going back.
"He was supposed to go to work that day," Brenda recalled, "and he didn't. We had a fight, he left to go in on his shift, and he never made it down there. He turned around and came home, and we had more words. He went out for a walk, came back." Then he went out into the backyard and shaved his head. "I freaked out at him," Brenda said. "I said, 'What the hell are you doing? What's going on?' And he just wouldn't talk to me." Then he decided he needed a pair of shorts. He took off his jeans, cut the legs off, and put them back on. He got himself a water bottle, picked up his knapsack, and left again. Seven hours after leaving home, John found himself at the door of St. Joseph's Hospital. He went to the emergency ward and asked to speak to a psychiatric nurse. After she did the initial triage assessment, he spoke to the emergency physician. "There was no intent to harm myself, no intent to harm others, and at the end of it all the physician said, 'Would you like to be admitted?' I said, 'No. What's admitting me going to do?' She said, 'Probably nothing.' I said, 'Well, let's save the bed for someone who really needs it.'"
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A nurse did an assessment, and we talked about an hour; and I went out and talked to the doctor and she's barely thirty, and she's pregnant with her first child, and I'm going "What's wrong with this picture? You're going to counsel me?" I said that to her "You're heading into your first child, and you're going to counsel me on the death of a child? I don't think so. I don't think you have any advice, and you have no medicine for me." And she said, "You're absolutely right. I won't waste your time." I calmed down and just kind of talked about how I was feeling, how things were going, and got things in perspective and gave myself licence to fee/ that way. I said, "Why the hell shouldn't I feel like this? There'd be something wrong with me if I didn't feel like this." And it was liberating.There's a certain liberation to it the hair and the clothing, and just that whole image thing, there's a certain liberation to it, to say,"l just don't fucking care what anyone says.This is how I feel, and this is what this death is doing to me. I don't want pity, I don't want compassion, I don't want anything, really, from anybody." But I wanted to give this to myself, to say,"lt's okay to do this. It's okay to look the way you look. It's okay to shave your head; it's okay to feel the way you're feeling. . . . Go ahead. You have my blessing...."
Brenda's reaction was mixed. "I was relieved to see him and relieved that he was okay," she said, "but I was upset at the same time that he left without saying where he was going."
I thought he was going off to kill himself. He said he walked down to the cemetery across from Dundurn Castle, there's an old
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cemetery, and wandered around there. And it didn't come out for a while, until later; when I asked about what the head-shaving stuff was all about. It was his way of expressing his grief and setting himself apart from people.
For any of the neighbours who might have happened to see John trudging off that afternoon, bald as a billiard ball, it would have made for a peculiar sight indeed, but for John nothing about it felt strange at all. He told me it felt like the most natural thing he'd done in a long, long time.
If you go back in history, and even present-day cultures, cultures who deal with death a lot better than we do cultures that don't pay someone ten thousand dollars and say, "Here, take this body and fix it up, and let's put it in the ground, but don't let me touch it, smell it, or be near it," other cultures that don't do that they tear clothes, cut hair, wail and scream.They wear black for a period of time, they stand out in the community they live in, in mourning, and are treated as such, so there'll be a little extra patience, a little extra care. "Here's a little extra food, a little extra compassion" because they had the mark of grief on them. Kind of like the Old Testament the rending of clothes and hair and stuff, in grief, and wailing and all that sort of business. And a lot of Middle Eastern cultures see nothing wrong with that, nothing at all, and it's that mark of grief. And so I figured this is going to be my mark of grief because I'm sick and tired of pretending. My outsides are going to match my insides for a while, and if I look like a survivor out of Auschwitz, well, that's what I feel like. It just makes such total sense, just saying to the world, "I'm not
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okay. I'm tired of pretending I'm okay. I'm not all right, look at me." Not that people treated me any differently, but. . . . It was more something I did for myself. It was more for me than for anybody else, and it wasn't designed to shock anybody, it wasn't designed to get any extra attention. It was just to be able to look at myself in the mirror and go, "Jesus Murphy, yeah, things aren't good. 1 don't feel well.This is not well, this is not good." And kind of giving myself licence to grieve, licence to mourn. And mourn publicly. I just got tired of "How are you?" "Fine, how are you?" all that stuff. My behaviour didn't change a whole lot; I didn't get reckless or anything or any angrier. Nothing really changed, except there was an internal thing, to say this is okay, and it's okay to be angry. You have every right in the world to be angry. And you need to use that anger productively.
It wasn't clear to John just how he should be using his anger "productively," but one of the clues came a few weeks later, quite inadvertently, when in early September he and Brenda met face to face with Donna and Jack Davis for the first time. The Davises were travelling through to Moncton to visit their daughter, and they had a two-hour layover in Hamilton. The two couples arranged to meet at the airport. "It was weird," John said. "We recognized each other immediately. We'd had no prior description of each other, no pictures, and I knew her immediately. It was in quite a crowd, it was a jammed flight, and I just went and put my arms around her I didn't even say, 'Are you Donna?' I just
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knew it was her. As did Brenda." "Oh, it was wonderful," Donna told me. "It was wonderful but so sad that we had to meet that way. We had to meet over losing our children. We felt like we had known them all our lives, they were so easy to talk to, and we really had a connection. Sometimes women find that easier than men, hut my husband, too, he just felt like it was destined to be, like we just had to talk to them, and it helped us so much at the time." As they sat in the airport coffee shop, Donna proceeded to bring John and Brenda up to date on the progress, or rather the lack of progress, in their case. "They were still looking at a lawsuit," John explained, "and they were trying to get some answers to what happened to their son, and they were getting nowhere." More than five months after Vance's death, the family had yet to hear a word from the hospital. John wasn't surprised to hear about the hospital's silence, but still he was infuriated. His anger stayed with him.
This is what incenses me in this whole thing. They're public hospitals. What right do they have to shut their doors and say we're not speaking to you? Where do they get the right to do this? It's our money. It's our hospital. We bought and paid for it. We maintain it to the tune of billions of dollars a year It's our system, it's our hospital, it's our children. And these guys can just shut the door and say we're not speaking to you?
John felt outraged not only by the institutional arrogance
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that seemed to be so prevalent in the health care system but also by its effects on the families these institutions are intended to serve. He wondered if it was time for him to turn his attention to such larger issues. His goal was not to divert his focus from Claire's case but, rather, to link her tragedy and Vance's, and Ashley's to the risks and perils that any family might encounter. He wanted people to know what they, too, might have to deal with in facing such a tragedy themselves and how they, too, could expect to be treated by health care professionals. Perhaps, he decided, it was time to go public. After all, look at what the Atkinsons had accomplished through their persistence. Look how influential the media's attention had been in getting Ashley's case to an inquest. The thought of approaching the media wasn't new to John or, for that matter, to Donna; in fact, it had become one of the recurring themes of their talks and correspondence. "We both wanted to make the public aware," Donna told me. "And we wanted to let the medical profession know that they couldn't get away with it."
You can prove something wrong and, say, have a meeting with them and say, "Okay, we want this changed" if they'll even meet with you but it doesn't have the impact. 1 really, somehow or other; want the mediate get involved, to let people know that this happens far more frequently than what people have any idea of. We've got to protect the public out there, we've got to protect our children.You have to go into a hospital knowing that you have to be aware of everythingôu have to ask all the right questions, which unfortunately even John and I, who are both nurses
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I know / feel like I didn't ask the right questions. So for people that don't have that medical background, how can they be forewarned?
John felt it was time to act despite the potential ramifications on his lawsuit and the other proceedings. Prudent or not, with or without Paul Harte's approval, he felt that he had no choice in the matter. "It just wouldn't go away," he told me. "As much as I wanted it to. I guess it's my drive, feeling so driven to do this. It's hard to turn it off and hard to make it.go away." So John sat down one night at his computer and wrote a letter. He briefly outlined Claire's case. He talked about the people at the hospital, their attempt to shirk their responsibilities, their sudden turnabout, and their highly unusual letter of apology. He talked about the much more common reality the reluctance of public institutions in and around the health care system to deal openly, honestly, and compassionately with families. He thought that the Canadian public might be interested in seeing just how serious the "hidden epidemic" of medical error was and how impenetrable the health community's "culture of silence" had become. He invited inquiries. He urged interested parties to contact him for further details and more extensive information. And when he finished, he sent the letter to every major Canadian media organization he could think of.
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heardest part, as always, was the waiting. In fact,, many things happened during the fall of 2,002,, and even more in the days and weeks leading into the new year, but for John and Brenda, even when things got busiest, the entire season seemed to drag on and on. On one hand, there was often too much happening at once; on the other, it seemed that nothing was ever fully resolved and that they were making little real progress. Throughout the fall and into the winter, the family seemed to grope along from one day to the next, watching as the events and activities streamed by them, but they felt detached, disconnected from everything and everyone around them, including each other. "We just seemed to be all on different paths," Brenda told me. "Really isolated from each other."
It was like the three of us were lost in the forest or something. We were all in the forest, but not together and just really not connecting with each other at all, It had gone from everyone sharing
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their grief and pain to everybody not being able to deal with anybody else's grief and pain, because our own was just too much for ourselves individually.
John appeared to have overcome the emotional trauma he had undergone earlier that summer, but now the strain was taking its toll on Brenda. "I was reliving the entire summer and fall before," she said, "and it was killing me. Every appointment she had, I could remember clearly. Whatever the date was, I'd think about what I was doing that day the year before you know, we'd taken her to see the neurosurgeon today, today she had the CT scan, today she had the MRI and it was just awful, remembering all that stuff. It was more than remembering, it was like reliving it. It was really intense." By October, with the approach of the first anniversary of Claire's death, Brenda felt she was no longer able to work.
I ended up sitting in the doctor's office and crying, saying I couldn't cope anymore, and he faxed a letter to work and told them that in his opinion I was suffering from a major depression and needed at least eight to ten weeks off. Well, I didn't even have that, I had six weeks. I had vacation time, I had sick time, and I borrowed some time, and took as much time as I could off. It didn't feel like enough, but, you know, what choice did I have? I had to go back to work. Either that or go on long-term disability, but again it didn't seem like something I could afford to do, either financially or professionally.
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The first response to John's letter to the media was from Maclean's magazine. Just days after John sent it out, staff writer Danylo Hawaleshka called John from Toronto and met with him and Brenda in Hamilton shortly afterward. John was also approached by TVOntario, the province's public broadcaster, but Paul Harte convinced him not to make any television appearances while the civil suit was under way. (Paul agreed, reluctantly, that the Maclean's story could proceed, provided that the names of physicians and nurses and other staff were not used.) By legal standards, the civil action was beginning to move quickly. Paul had filed the family's statement of claim in mid-June, In August, he was contacted by the lawyers representing the hospital and the physicians, and by November the possibility of settling the claim was on the table. The CNO complaints process, on the other hand, had been proceeding at a snail's pace. Subsequent to his initial complaint, which had been filed in October, John had submitted more than thirty new complaints the following spring, against six more nurses. The College attempted to discourage him from submitting them, but John held his ground.
The Director of Investigations calls me and starts in about these complaints being unreasonable and very vindictive, I said, "I'll tell you what. I'll get in my can I'll come to Toronto, I'll sit down with you, and I will show you each and every complaint in the health record, in black and white, and signed by your nurse. How's that?
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You can have the president of the College there, you can have whoever you want at this meeting. I would encourage you to bring as many people as you possibly can, because I will show you, bit by bit, every single compliant. Nothing is fabricated, nothing is vindictive." Silence This is a rant. I'm ranting by this time but articulate and intelligent and focused, and I stuck to the facts, didn't fabricate anything. He said, "Mr Lewis, I can't deal with this myself, I'll have to call you back'Ten minutes later he calls'me back and says, "Mr Lewis, all the complaints will go forward as written. Thank you for submitting them."
Several weeks later, in mid-August, John received a letter from the CNO'S Complaints Committee informing him that the hearing had been concluded regarding three of the five nurses named in his initial complaint. Actually John received three notices; they were form letters, each one identical except for the name of the nurse. The committee's decision was to issue each of the nurses a letter of caution, which was described as "a non-disciplinary form of warning . . . which will articulate the committee's concerns about practice deficiencies that were identified as a result of a review of the investigation." A letter of caution is much more serious than it might sound, John pointed out. "It's only one step before a suspension or charges are laid. It's on your record for twenty years; it follows you everywhere you go in your job." Nevertheless, John found the decision unacceptable and responded immediately by filing an appeal. His principal argument was that the investigation had been inadequate (notably because neither he nor Brenda had been interviewed
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or consulted by the investigators); he also felt that the nurses should have been required to take some education or retraining in drug management, to use one important example. Instead of filing against each of the cases, he took a word of advice from Paul Harte: "Pick your fights carefully," he suggested, "otherwise it will drag out forever." John appealed the decision only against the nurse who was on duty the day Claire died rather than all three nurses. This set in motion yet another process that, not surprisingly, would take several more months to complete all of which, as John noted caustically, would be held behind closed doors. "It's not a transparent process, and it should be." One other activity that took shape that fall was the ramping up of Revolution Hope. In early September, after several weeks of relative inactivity, the group began to meet more frequently, with the intent of getting better organized. Their new priorities included the development of a business plan, a vision statement, a marketing strategy, and, eventually, a new fund-raising event. But suddenly all of this fell into the background as the year ended with an abrupt and sharp turn of events with John and Brenda finding themselves in the centre of a new storm of pain and anguish and controversy. On December 2-3ld, 2,002, they received word from the office of Regional Coroner Dr. David Eden that the coroner's review, written by local coroner Dr. Richard Porter, was completed; fourteen months had transpired since it had been announced. Furthermore, the Pediatric Death Review Committee (PDRC) report, which was done under the auspices of the Chief
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Coroner's office, was also finished. John and Brenda drove out immediately to St. Catharines to pick up the longawaited, and highly anticipated, documents. The package was waiting for them at the receptionist's desk. John picked it up and opened it, deciding to take a quick look before leaving. Within seconds, he saw that the report was not at all what he'd been expecting. On page i of the report's two pages, under the heading of "Investigational Details," he read everything he needed to know: "Status: Final. Inquest required: No. Death pronounced: i5/Oct/2Ooi. By what means: Natural Disease." Farther down the page came "Medical cause of death: craniopharyngioma." Below that, under "Due to/as a complication of," was a blank space. And the space under the next heading, "Contributing factors," was also empty. John could not believe his eyes. Turning to the receptionist, he demanded to see Dr. Eden. He was in the office, she explained, but he was busy. "Well, I suggest you get him unbusy really quick, right this second, because I'm not leaving here till I see him." "Well, Mr. Lewis, I " "No, don't 'Mr. Lewis' me. I'm not leaving till I have a meeting with the coroner. Or should I just proceed right now to bring in the Chief Coroner? His choice. You go ask him." Dr. Eden appeared moments later. "Mr. Lewis, how are you? How can I help you?" he said, ushering John and Brenda into his office. John wasted no time in taking him to task over the "ridiculous document." Using the most blatant example of
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the report's errors, he asked how they could possibly attribute cause of death to craniopharyngioma. "Are you insane?" he asked. "It was taken out of her head two days previously. How is it going to kill her? You're actually going to put this out? You've got to be out of your mind to hand me this." Dr. Eden stuttered and stammered, John told me; instead of trying to appease John's anger, he only made it worse commenting, for example, that nothing about the investigation "could have changed the outcome" of the tragedy. John insisted that, as Regional Coroner, Dr. Eden was obligated to ensure that a thorough investigation was provided; clearly he hadn't. How, John asked, could there be any other conclusion than to hold an inquest? "Well, Mr. Lewis," he said to them, "you have to understand it's the coroner's decision, not yours." John was flabbergasted. Insult upon insult. Deja vu. "Again I'm an idiot," he told me. "Again I know nothing. Again you can hand this guy this review and just blow him off."
It was a page and a half long. And this is fourteen months before they do this. Fourteen months we've waited for this coroner's report. It was just absolutely bizarre, But an unsuspecting family, an unknowing family, looks at it and says, "Well, I guess there's nothing they could have done." End of story.
But John and Brenda Lewis are neither unsuspecting nor unknowing. Sensing that they were wasting their time trying to reason with the Regional Coroner, John got up quietly,
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saying nothing further, and he and Brenda left. It was less than forty-eight hours till Christmas, but there would be little joy in their home, and little celebration. There was too much anger; there were too many old wounds and fresh ones to attend to. And, for John, there was too much work that had to be done. It didn't take him long to identify what he regarded as gross errors and inaccuracies throughout both reports; by this stage, John was able to spot the shortcomings, and respond to them in precise detail, from the top of his head. That night he sat down to put it all on paper, in a five-page "review" of his own. His response to the Coroner's Investigation Statement listed nine points that the coroner either missed, misunderstood, or ignored. Death was "not of natural causes," John wrote. "This child dies of catastrophic cerebral edema directly related to the exogenous supply of DDAVP administered with hypotonic solutions." Death in fact was "not natural disease. This child had no disease that resulted in her death, as all vital organs were successfully transplanted into six individuals, impossible with any disease present." Death was "not from craniopharyngioma. Considering the tumour was completely excised and eradicated October izth, 2001, how is it this now nonexistent tumour goes on to kill her two days later?" John found Dr. Porter's narrative section of the statement not only inaccurate but utterly perplexing. It refers to the presence of diabetes insipidus pre-operatively despite the lack of any evidence of such in Claire's records. It refers to
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"normal postoperative electrolyte problems," but, as John noted angrily, such symptoms "do not include seizure induced by hyponatraemia related to misuse of DDAVP." He went on to point out that Claire's autopsy clearly indicated profound cerebral edema as the cause of death. He demanded to know why the coroner made no reference to "serial doses of DDAVP in conjunction with hypotonic iv solutions," even though Dr. Porter's own office had advised the family a year earlier that the local coroner had called the hospital to express his concerns about the inherent risks and dangers of such a combination. John took great exception to Dr. Porter's total lack of reference to the key issue of DDAVP use. On the other hand, he was astounded to see that almost half the narrative text discussed in great detail the steps taken in and around the organ and tissue harvests. "I had great difficulty," the coroner wrote, "accepting that there was nothing that could be done for this little girl's gift and asked to talk with the surgeons of the Toronto and Ottawa transplant teams directly. It took very little conversation to explain the circumstances and both agreed that the harvesting should proceed posthaste." Finally, John stated his deep concern about the coroner's total disregard of the issue of post-operative care "i.e., improper medication administration, improperly written orders, incorrect diagnosis postoperatively," and more: His list went on for another five lines. "One paragraph from the coroner fourteen months post death," he concluded, "full of erroneous information, with a bizarre focus on the organ donation and not the causes of
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death, cannot possibly satisfy the questions and issues raised by this horrific and senseless death of a profoundly loved nyear-old child. We, the family, and the public of Ontario expect far more from our public officials than is represented in this inaccurate, incomplete and unfocused investigation." John's response to the PDRC report was more technical in nature (and twice as long as the PDRC review itself) but no less abrasive than his assessment of the coroner's statement: "The pediatric death review committee's review is full of errors and omissions also, leading the reader to question exactly how thorough a job and understanding this committee had of this case." John challenged the review on ten points, ranging from technical errors and inaccuracies (times and dosage rates of DDAVP administration, measurement of serum sodium levels, fluid balance levels) to the larger issues, the most serious of which was the review's failure to address the matter of DDAVP use. "Death was not a result of fluid type alone, as the committee attempts to imply; DDAVP played a crucial role in her death. . . . The committee makes no mention of the serial doses of DDAVP, in fact does not even record them on the chart found on page five." Finally, John stated that he was deeply offended by the committee's concluding remarks: "The Committee endorses the findings and recommendations of the case review done at McMaster." "The committee," John wrote, "an independent public body, comes up with no recommendations of its own in this horrific case? The Committee does not question or willingly want to know the processes that lead to communication breakdowns, leading to misdiagnosis, leading to
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incorrect treatment, leading to mindless administering of serial doses of DDAVP, ultimately leading to this child's death?" Reiterating his point regarding the coroner's role and responsibilities, he concluded his letter by stating, "Fourteen months of waiting to receive a total of five pages of an erroneous assessment of this child's death is not what I would suspect the public of Ontario would endorse from this public office, considering the issues of care, system failures, and serious issues of patient safety related to this child's senseless death."
John was satisfied that his review covered his concerns clearly enough, but he wasn't sure what to do with it, how to use it to its greatest effect. He sent a copy to Dr. Philip Hebert and asked for his comments and suggestions. Hebert, deeply upset by what he read, immediately wrote back to John with a list of names and addresses; most notably, it included those of Ontario's Acting Chief Coroner, Dr. Barry McLellan, and Deputy Chief Dr. James Cairns. John sent out his review, dated Friday, December 17*. In addition to the province's top two coroners, it went to their superior, the Minister of Public Safety; copies also went to the Minister and Deputy Minister of Health. The first response came immediately after the holiday season ended. John had resumed classes that week at McMaster University. When he got home and checked his voice mail, among the messages was a call from Dr. Cairns.
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"He said, 'This is Jim Cairns. Mr. Lewis, can we get a meeting lined up?"' John returned the call that evening, phoning him late enough to ensure that he, too, would get voice mail: He wanted to leave a message rather than speak to the coroner directly.
I left a message and said that any conversations, any dialogue with me, will be done through counsel. I said, "I want to be very clear of what's said here. Your regional tried to sandbag me, you're not going to do it again." I said you can call Mr Paul Harte and gave him the phone numbers. I said,"... I want a third-party paper trail. You will not speak to me directly, nor will your regional coroner speak to me directly. You will speak to my counsel, and he will set up any meetings." And I hung up.
As the possibility of this crucial meeting came closer to fruition, another whirlwind over Claire's case was gathering momentum and it all happened under the glaring lights of the news media, both locally and nationally. It began with the release of Maclean's arid the first published story of what had actually happened to Claire. The article gave a vivid and chilling account of her death and of the family's ordeal both during and after the tragedy. It zeroed in on the family's disastrous meeting with Hamilton Health Sciences officials and the hospital's subsequent apology. It concluded with the family waiting for the results of the coroner's report, thus implying, just as John and Brenda had assumed, that his
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report would provide some answers and some solid ammunition for their case for an inquest. Ironically, the magazine hit the newsstands on December 23rd, the very day of John and Brenda's meeting with the regional coroner. On December 27*, the Hamilton Spectator ran a fulllength, front-page feature under the title "A Grief without End." The story added little to what was covered in the Maclean's feature, but its impact in the local region was far greater. On Saturday, December 28th, the Globe and Mail ran a story, under the headline "Parents' Hope for Inquest Dashed," that brought Claire's case and John and Brenda's long-running battle for disclosure and accountability right up to date. "This advocacy," it quoted John, "is born of pain and heartache, and it's all about the issue of patient care and patient safety." The Spectator followed suit, running another story on December 31" "Coroner Says No to Claire Inquest." The story did not escape the attention of David Eden. He contacted the editorial offices of the Spectator on January 2nd to explain what he called the Lewises' unfortunate "misunderstanding" of the document he had issued. This phone call resulted in another article, which ran the following day, "Inquest May Still Be Called into Girl's Death." What John and Brenda thought was the "final" report was, according to Dr. Eden, simply the local coroner's report; the actual "final" one would be forthcoming from his office, as would the final decision on calling an inquest. "The report says 'no inquest,'" Dr. Eden told the Spectator', "but that is simply a fact that when Dr. Porter sent me that report, no inquest had
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been called." He suggested that, rather than pursuing "a costly inquest," there might be other, more effective ways to "get the message out about what was learned in this case," such as dealing directly "with the very specific agencies that would need to be aware of it." The damage control, if such was Dr. Eden's intention, only fanned the flames. In the same issue, the Spectator's editorial argued that, as its headline proclaimed, "Claire Lewis, Family Deserve an Inquest." "In the absence of a formal public hearing as provided by an inquest, our concern is that questions will inevitably linger as to whether authorities have taken every possible step to prevent a similar tragedy. . . . The case for an inquest is strengthened by serious concerns expressed by Claire's father John Lewis about what he sees as the inadequacy of Porter's report." John took issue with a different matter altogether, one that he regarded as yet another of Dr. Eden's highly inappropriate actions. One of the Spectator's reporters had called John to tell him that Dr. Eden had Called the editor to complain about the paper's presumption about the inquest. On hearing this, John wrote immediately to the Acting Chief Coroner, Barry McLellan.
In so many words, I said, "This is what the regional's up to. I really hope he wouldn't use his position to influence anything further in this case, or the reporting of this case, in a democratic, free-press society,This is dangerous, horrible behaviour, from this regional coroner" I said, "Are you in agreement with this? Do you think this is a good idea? The Spectator doesn't, and I don't think it's a good
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idea to have a regional coroner personally calling the editor to complain about something in the paper"
From that day on, Dr. Eden "fell off the face of the Earth," as John put it. "They yanked him off this case anyway." When John later asked Jim Cairns what had become of him, the Deputy Chief Coroner would say only that "He is no longer in that office."
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Paul Harte jfafter a series of exchanges betweenpertaining to and Jim Cairns addressing various details Claire's case, the meeting took place at the Deputy Chief Coroner's office in Toronto on February 19*, 1003. Paul accompanied John and Brenda. Dr. Cairns had invited Dr. Desmond Bohn, Chief Pediatrician at the Toronto Hospital for Sick Children, and one of the authors of the Pediatric Death Review Committee's review. Once everyone had taken a place around the board table, the lights were dimmed; using a laptop computer. Dr. Bohn opened the first page of the PDRC review and projected it onto a large screen. The atmosphere was cordial but tense; John's manner, on the other hand, was adversarial. His anger over the errors and inconclusiveness of the PDRC review had not diminished, and John was determined to be neither intimidated nor deterred from his singular objective: Getting an inquest. "I had decided at the get-go, Tm not looking at you guys. I'll look at the screen, I'll look anywhere but up.'"
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John questioned Dr. Bonn at every turn, often over points that were relatively minor dates, times; it quickly became apparent that his intention was to challenge the review's overall credibility. "It's ridiculous, you're wrong," John kept interrupting Dr. Bohn. "You need to see this again," he said, pulling out Claire's chart. "Who did this review? Are you people out of your minds?" Brenda tried several times to settle him down, but John wouldn't listen. "I just kept at them," he told me. "I pulled out her chart and said, 'Look, this is the number. You're wrong.' 'Oh. Well, we'll make a correction.' Blatantly just wrong. Things that just didn't happen." Back and forth they went, with Dr. Bohn and the Deputy Chief Coroner trying to make their way through the review and John peppering them with questions. His main contention was cause of death, which the review, in his opinion, had completely sidestepped by not addressing the use of DDAVP. As he had written in his letter of response, "Death was not a result of fluid type alone as the committee attempts to imply; DDAVP played a crucial role in her death." Dr. Bohn seemed unwilling to discuss the technicalities of John's point, and indeed the patience of both doctors appeared to be wearing thin. John became even more agitated; he then went into a long tangent that nearly brought the meeting to a halt. "I launched into the physicians' care, which the coroner doesn't care about. The coroner doesn't deal with that, so he's not going to touch it." John simply could not accept that the coroner's terms of reference would prevent him from discussing what he regarded as the paramount issue of the entire
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case. His anger and frustration turned to rage. "It just got to where I was almost up on the table," he told me. Brenda reached over and took his arm. "You gotta calm down" she told him. "I think they were getting defensive," Brenda recalled, "and it was perceptible, in the body language and stuff. When people get upset, that bureaucratic wall goes up. They can't deal with your anger. It's easy to write you off as irate, nonsensical, when you're angry." Paul Harte decided it was time to intervene. "I felt that he was letting his anger interfere with his objectives. Jumping up and down and screaming at people is not going to get you an inquest. Fundamentally, one of the things one looks at, from a coroner's office, is 'How difficult is it going to be to work with this family?' So there is an aspect of trying to sell it to everybody." Paul asked Jim Cairns for a time-out so that he could speak to his clients privately. Dr. Cairns suggested that he and Dr. Bohn would leave so that they could have the boardroom to themselves. When they left the room, Paul turned to John and told him bluntly that whatever prospects still remained for getting an inquest were now in serious jeopardy. John didn't like what he was hearing, but he listened, and he clearly recalls what Paul told him:
Paul said, "You can continue this behaviour, or you can calm down and get focused on the issue. It's entirely up to you. I can't control you." And he said it in a nice, stern, quiet voice."You can blow this, or you can start to participate and let them have their say. Calm down, get off the table.These guys didn't kill Claire, they're here
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to help you, they're here to investigate this, and you can understand that, or we can leave now, I can't tell you what to do, but as your lawyer I'm advising you get off the table and get out of their faces. You have their attention, don't wreck this. You've come a long ways. You're sitting in this office. A lot of people don't get this far Don't blow it."
It worked. Between the two of them, Paul and Brenda brought John to his senses. When Drs. Cairns and Bohn returned, John was calmer than he'd been all morning. His emotions had gotten the better of him, but now he had regained his composure. He'd lost sight of his mission, but now he was back on track. There was no doubt in Paul's mind or Brenda's, or even John's, that the meeting thus far had not gone their way. The odds were against them even before John's outbursts; Paul had been warning John and Brenda for months that it was going to be difficult, if not impossible, to get an inquest. "The coroner has limited funds," he explained to me, "and simply cannot hold an inquest into every death. So they have to make what ultimately comes down, to a certain extent at least, to a policy decision, if not a small 'p' political decision, as to whether they're going to proceed in a given case. They're not going to call an inquest where a specific doctor made a mistake; they're going to hold an inquest where a system failed. Because a doctor making a mistake, their view is, you go to the College, and the College takes whatever action is appropriate." As the meeting reconvened, Dr. Cairns opened with a con-
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THE KILLER BLOW
ciliatory remark about the cause of death, suggesting that perhaps they could reconsider the review's conclusion. A relatively civil discussion ensued, and shortly afterward the two doctors and John reached an agreement on the phrasing: "cerebral edema causing brain stem dysfunction relating to hypotonic solutions in the presence of DDAVP." It was not the unequivocal statement that John would have preferred, but he viewed it as a major improvement. "We're all in agreement, then, with the cause of death?" Dr. Cairns offered. "Yes," John replied, "the cause of death is a little more in line with what I understand it to be." As everyone nodded quietly, John raised the only remaining unanswered question: What about the inquest? Jim Cairns did not say yes or no; rather, he began to explain the difficulties, from a coroner's perspective. The purpose of an inquest, he explained, is to identify what went wrong and to ensure that measures are taken to prevent its reoccurrence. The problem here, he said, was that the hospital had already taken responsibility, and indeed it had put new measures in place. "No, they didn't," John interjected quietly. Dr. Cairns glanced up at him sharply. "I beg your pardon?" "What if there was a second death - same tumour, same surgery, same drugs, same hospital, same outcome. Would that get your attention?" The two doctors stared at him but said nothing. "Maybe you can help me out with the cause of death in this case. . . . " John proceeded to tell the story that
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began with a phone call he'd received in late December, just after the Hamilton Spectator ran its front-page article about the hospital apologizing for Claire's death. This gentleman, John told them, had also lost a child, a teenage boy. His son had had the same problem as Claire and had died as a result of post-operative complications that appeared to be virtually identical to hers.
For Barry and Cindy Lasovich, the nightmare began one Saturday afternoon in early July. Justin, whose parents were separated, was spending the weekend with his father, and the two of them had gone for an afternoon swim at the pool in Welland, near their hometown of Port Colborne. As Justin was getting out of the water, Barry saw that something looked wrong: It was a sunny day, but Justin's eyes were fully dilated. "Do you feel okay?" he asked. "Well, I don't know," Justin answered. "My vision's been getting funny lately, and I think I need glasses." "Well, when I drop you off today, you tell your mom to make an appointment with your doctor right away quick." Cindy got Justin in to see their doctor on Friday, July 12th. Noticing something behind Justin's eye, the physician referred them to the hospital in St. Catharines, where Justin would be able to see an eye specialist. They took him in that evening, and, when the specialist advised a CT scan, they returned the next morning. The scan confirmed that Justin
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had a brain tumour. "And then everything just happened so fast," Barry told me. "It was from the doctor's to St. Catharines for a scan on the Saturday and from there to McMaster. It was very, very devastating. Sometimes I still want to pinch myself and wake up from this dream. Unreal." Justin was admitted to McMaster that afternoon; the next day, with fluids continuing to build up in his skull, he underwent emergency surgery. "They had to put a shunt in to relieve the pressure," Barry explained. But on Sunday, Justin was still experiencing difficulties. "He was looking at his hands funny," said Barry. "I said 'What's the matter?' and he said, 'Everything looks like it's a charcoal colour.'"
So I went and told the nurse right away, and everybody started scattering, running around, and they had to take him back down to surgery.There was pressure building up on the other side. So they had to put another shunt in, and that was fine, that relieved the pressure and everything. . Then a couple of days after that they said he could go home for about a week or so, and then they booked in the surgery, it ended up being on a holiday weekend, which probably was not a good time to do surgery, on a holiday weekend, but And from there, well, it just kept leading to things that were . . . no good.
The craniopharyngioma surgery took place on Friday, August ist, at Hamilton General. It was not as long as Claire's (seven hours compared to eight and a half), but it was more difficult. The surgeon estimated that about eighty percent of the tumour had been removed; nevertheless, he
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told Barry and Cindy that the prognosis was positive: He expected a full recovery. "On the Saturday after his surgery," Barry said, "one of the surgeons came in, the one who was going on holidays, and he told us that everything looks fine, that there's no problem. He said it's going to be a long, hard recovery, but everything's going to be just fine." One day after the surgery, Justin appeared to be recovering he was alert, attentive, and starting to drink fluids on his own but on Sunday morning his condition deteriorated sharply. By Monday, he wasn't verbal and didn't respond to commands. He crashed early that afternoon. He was intubated and taken in for a CT scan. The scan appeared to the physicians to show a bleed on the left side of his brain. But it was not until seven the next morning that Barry and Cindy were told, for the first time, of the true gravity of their son's condition. At eight o'clock, Justin was taken to the OR, where the surgeons attempted, unsuccessfully, to relieve the pressure on his brain by removing the bone across the top of his skull. Justin continued to show "an absence of brain stem and cortical function." The only decision that remained, and that rested with Barry and Cindy, concerned the removal of Justin's life support. Throughout this period, Justin's parents had been told repeatedly, by the doctors and the nurses, that he was "just fine." Their intuition had told them otherwise. "As soon as trouble started happening," Barry told me, "we had a gut feeling there was something wrong." Their concerns were ignored. On one occasion, on Sunday afternoon, Barry alerted the nurse that Justin's body was twitching erratically
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(the event was later identified as a seizure); she told him the doctors were "busy," but he demanded that someone attend to him immediately. The doctor took a brief look at Justin and told his parents that his movements were "a normal part of waking up." This and other incidents were documented by Barry in a notepad, something that one of the surgeons had recommended to him prior to the surgery. "He said, 'Do yourself a favour and go out and buy yourself a little book and a pen and make notes every day what the weather's like outside, what's going on around you and ask questions, make little notes.'"
As a matter of fact, when things started falling into place here, I really kind of wondered, did somebody kind of suspect that something could go wrong? And when everything got done in the end, I couldn't believe it. I said,"Jesus, it's almost like he knew that we're going to need these notes down the road."
Months later, one of these notebook entries was to come racing back to his mind as he read about Claire Lewis. "When they were in giving him all these needles all at one time, my ex-wife piped up and said, 'What are you giving him?' And this is where we wrote this name of this drug, this
DDAVP."
Justin was pronounced brain-dead on August 6th. At that time, one of the surgeons told Barry and Cindy that someone from the hospital would soon contact them, but no one did. They were still waiting four months later, and they might have
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waited even longer if Barry hadn't gotten wind of the Hamilton Spectator story of December 2.7th. "Jason he's my other son, he's living with me he came home one day with a newspaper clipping, and it was about John's daughter."
I started reading this, and I just had a chill run right through my body. It was so hard. I just read that, and I'm going "Oh, my God." And from going through things, I'd seen the word cmniopharyngioma, and I couldn't believe it. I said, "I have to get a hold of this gentleman somehow. I hope he's not going to be upset that I get a hold of him," but something was telling me I had to get a hold
of him.
Barry found John's phone number and called him one evening. "Are you the John Lewis that had a daughter that passed away?" "Yes, I am," John answered. "I give you my deepest condolences," Barry told John, and then he told him about what had happened to Justin. "It was kind of like a silent thing there for a minute on the phone," Barry told me. "I don't think he could really believe that he was hearing what he was hearing."
It was very hard. Like I was feeling for him at the same time, and trying to put my feelings aside for my son, and I just kind of knew what he was going through, and it was very hard for me. Like I kept apologizing to him for bothering him, and he said there's no
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THE KILLER BLOW
bother And he said he was so happy that I called.
"Has the hospital contacted you?" John asked. "No." "The doctor?" "No. "The coroner?" "Nobody." John felt repulsed and angered all over again. He was happy that Barry had sought him out, and immediately offered his help, but he was shocked to hear about Justin's death, and badly shaken by all the parallels with Claire's death. Brenda reacted the same way. "Right after the phone conversation with him, he came upstairs and told me. He said, 'They did it again.'"
He told me everything that had happened with the Lasoviches, and their son, and we were both crying. It was just unbelievable that they had done this again, months after they had done it to Claire.You know, "Things had changed, procedures and protocols had changed, and this was never going to happen again." And lo and behold, it happened again. It just seemed inconceivable. And scary. If this has happened to another kid, how many kids has this happened to before that nobody knows about?
John told Barry that he should get Justin's health records immediately; he e-mailed him a template for the necessary release forms. Barry drove into Hamilton and put in the request. "They got it back to him in about two weeks," John said. "And the General records were at the General. They
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should have been at Mac," he added grimly. "They weren't." Barry made a copy for John and arranged to meet with him to go over them together. The meeting, their first face-to-face encounter, was as intense as their first conversation on the phone. "Barry strikes me as the kind of guy that hasn't cried very much," John remarked, "but he sure did a lot of crying in that telephone call and subsequently being here, at the table, with his oldest son. He was quite devastated." Barry said the same thing about John's reaction when John read the records. "He started going through them," Barry told me, "and he just was devastated. He said, basically, if you changed the two names around in the records, they'd be almost identical." The two men agreed on one other point: the hospital's culpability. Despite Barry and Cindy's lack of medical background, they had known instinctively that something was wrong and that they were not being informed truthfully. John recalled Barry's angry, tearful assertion as they sat together over Justin's records: "He kept saying, 'I'm not a doctor, but I know something went wrong.' Over and over, he's saying, 'I know something went wrong.' Because Justin was okay. 'He was doing good. I know it, my wife knows it something went wrong, and they're not telling us.'"
The office of Jim Cairns was deathly silent as John recounted the story, adding far more of the gruesome details about
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what had been done, and not done, than he'd had the heart to tell Barry. Hollenberg was the surgeon, he told them. The surgery was at the General; then the boy was transferred without his records accompanying him to McMaster. Both children were received by the same attending physician. And these, John pointed out, were just the first of many, many horrific parallels. He emphasized fluid management issues notably what appeared to him to be the highly questionable use of DDAVP and an inexplicable, inexcusable lack of proper urine and blood monitoring. "In particular," he told them, "and Dr. Bohn will be interested in this, they dropped this kid's sodium about nineteen millimoles in less than twenty-four hours." "Oh, my God," Dr. Bohn gasped. "Yeah," John replied. "Oh, my God. Think about what that does to a brain, particularly a kid's brain." He blamed the DDAVP for causing the boy to retain fluids at a time when he was already heavily overloaded, just as Claire had been. And once again, because of insufficient urine and blood monitoring, this child's sodium imbalance also went undetected until it was too late to rebalance it. Jim Cairns, who'd been sitting in stunned disbelief, finally spoke. "Are you sure about this, Mr. Lewis?" "I'm absolutely positive. I would not make this up." John spoke clearly and quietly, and with the certainty of one who sees the finish line, and victory, in sight.
I was calm. I was really sharp and really focused. I wasn't accusing anybody of anything, just stating the facts as I saw them, and that
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more than got their attention. And I quoted the recommendations from Claire's death blah-blah-blah, not done, blah-blah-blah, not done, blah-blah-blah, not done. Not done, not done, not done. I said, "Do you need a copy of Claire's recommendations? You can read them yourself"
There were seven recommendations listed in Hamilton Health Science's letter to John and Brenda in April. Four months later none of them was in place, and no fewer than six of them had enormous implications concerning Justin's treatment. "The patient's record (or a complete copy thereof) travels with the patient between sites." Justin's records remained at the General when he was transferred to the PICU at McMaster. "Education aimed at ensuring that icu staff understand and correctly respond to fluid balance, diabetes insipidus and other issues in the post-operative management ofneurosurgical and other complex cases in the PICU." Even though the use of DDAVP might have been appropriate at specific points during Justin's post-operative treatment, the protocol outlining its precise use, precautions, and monitoring requirements was not followed. "It will be reinforced with staff to be word-perfect in transcribing orders." This will be discussed ". . . to ensure that there will be wide understanding of the importance of this issue." A lengthy, detailed pre-operative note from endocrinology was not followed, as it should have been, to the letter.
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"AH staff are being reminded of the need to listen to the family and loved ones when they articulate concern regarding deterioration." Barry and Cindy's questions and pleas for further attention and action were repeatedly ignored. "Regarding guidelines, briefing and education, particular emphasis is being placed on the emergency management of the deteriorating neurological patient." Even though Justin presented with clear signs of seizure the day before he crashed, his sodium level continued to be monitored inadequately. As John went down the list, the weight of the atmosphere in the room was palpable. "That blindsided them," Brenda told me. "They weren't expecting that at all. I think Cairns was shocked, and humiliated probably, that this death hadn't been brought to his attention." On the other hand, Dr. Cairns was quick to regain his composure. "Once John told him, he wanted to know everything about this and was very clear that this death hadn't been flagged. He was perturbed and very interested at the same time." Jim Cairns asked John for the name of the child. "Considering confidentiality issues and things," John replied, "I don't think I can be telling you the name of the child." "I understand," Dr. Cairns answered. Just an hour earlier it had seemed clear to everyone in the room, even John, that there was little hope an inquest would be called. Now there seemed little doubt. "They had no choice but to do the inquest," John told me. "I knew I had them then; there was no question. For them not to do an inquest, and we go to the papers with the recommendations
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not being in place, and this kid dies? They had no choice." The meeting was adjourned shortly after John finished. Little more was said; little more needed to be said. But that evening, about nine o'clock, Dr. Cairns called John at home. "I'll give you the initials of a fifteen-year-old boy who died in August of 2002," he told him, "and you can say yes or no." "J.L." "Yeah, that's him." "And, just for your information, Mr. Lewis, we have a copy of the autopsy, and I'm going tomorrow I have a judge on the line right now, I'm getting a crown warrant for all records and I'm going tomorrow to seize them from McMaster and the General. And I'll be seeing Andy McCallum to see what he knows about all this." There was a long pause. Now it was John who was at a loss for words. "One more thing," Dr. Cairns added. "I would ask you to please not participate in this," he asked, "and to please leave the press out of it until we have all the facts." "Certainly," John answered. "I'm a man of my word, and I can understand." "Mr. Lewis, you need to understand, I'm extremely humiliated and extremely embarrassed. I can't begin to express my severe disappointment and my anger with my Regional Coroner at the moment, and with the hospital, for not bringing this to my attention." The next morning Jim Cairns wrote a letter to Paul Harte confirming that the Regional Coroner, David Eden, was no
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longer involved in the case and that he, personally, had taken charge of the investigation. He also called Barry Lasovich. He promised that Justin's case was going to be investigated thoroughly and assured him that he would advise him of the results as quickly as possible. Six weeks later Dr. Cairns asked John and Brenda and Barry and Cindy to meet with him in his office; Paul Harte was also invited. At the meeting, the first order of business was to explain the details surrounding Justin's death to Barry and Cindy. But Dr. Cairns said that he also wanted to tell both families, in person, that he and his staff had determined that the circumstances in the deaths of both children warranted a public inquest. Because of the many similarities, he told them, both cases would be investigated together, in a double inquest. He said he would be holding a press conference the next morning to announce it. Both families were pleased and relieved to hear the decision, but they reacted quite differently. For Barry and Cindy, this was the first time that they had been told officially that Justin's death was preventable. That harsh acknowledgement alone, though it only confirmed what they had long suspected, came as a brutal shock. "It was a very down day," Barry told me. "It was a workday, and I could not go back to work. From what they said up there, without any doubt in their minds, there was definitely a screw-up, in the hospital, and they felt that he should have been still here with us." Barry and Cindy were just beginning to feel the impact of what was going to happen and to grasp its significance, but for John and Brenda it had been a much longer ordeal. For
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them, this meeting, and this confirmation, represented the end of a sixteen-month battle. There was much more that had to be done, and it would be much longer before the whole truth would be fully and publicly revealed, but for the moment they could take some comfort in knowing that they had accomplished their goal. That evening Paul Harte, who'd also been at the meeting, called John to offer his congratulations. "Savour it," he told John. "Moments like this don't come very often." Paul, who had cautioned John so many times not to get his hopes up too soon, or too high, wanted to be the first to tell him how special he thought his victory was. "It was no small accomplishment," Paul told me. "It takes a lot to call an inquest, particularly where the circumstances of her death were at that point well known. The odds were very much against him." In fact, looking at John's prospects on the strength of Claire's case alone, the odds were probably insurmountable. It took a second death and an unusual chain of events that led Barry Lasovich to call John to turn the tide in John's favour. "It seems to me," Paul said, "that there's no doubt that, without the Lasovich case, he wouldn't have gotten there. And how did he get the Lasovich case? He got the Lasovich case by being persistent with the media. So full credit to him on all those grounds." From the broadest perspective, inquests are held for the benefit of the public's interest, not for any individuals or families. But there is another dimension to the process. In pursuing their own larger objectives the safety of the public, for example inquests can also shed light on facts
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that might not otherwise be exposed. "Look at any of these big public inquests," said Paul. "There may be a policy reason to have the inquest they're brought because the coroner believes that some genuine good can come out of it but, at the end of the day, the only way to get there is to pursue what some people would think of as a witch hunt. In order to corne up with a solution, you have to truly understand the problem. And you have to understand it from the ground up." That, John told me, was the part he and Brenda were looking forward to: watching the faces of the nurses and doctors involved in Claire's care as they tell their versions, under oath, of what happened. Yet he maintains that his motive had nothing to do with witch hunts. It was always about truth and accountability. He didn't go after individuals until he was forced to. He didn't willingly drive himself half mad with anger and torment and obsession. He didn't become a warrior by choice but by necessity. Had people been open and honest, and taken responsibility for their actions at the outset, it never would have come this far. That, he told me, his head hung low, his voice barely audible, is a tragedy in itself. Just a few weeks earlier John was quoted in the National Post on this very point. In February 2003, a medical error occurred at a highly respected hospital in North Carolina, resulting in the death of a teenage girl; in that case, however, the surgeon took responsibility immediately and very publicly. In a background story in the National Post, John said that, despite the apology they received from a hospital executive,
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they never heard from the team that treated Claire. That, he told the Post, would have made all the difference. "I've been talking to parents across the country and hearing the same things over and over. We want acknowledgement and we want an apology. We don't want physicians' licenses, we don't want nurses' registration, we don't want hospitals shutting down." It was one of the recurring themes in so much of John's writing and in so many of our discussions. "It's about taking responsibility for your actions and reactions," he told me, "and being accountable to the family, the hospital, the College, and the public at large, the society around you. That's what it's all about, and these guys just don't get it."
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ixteen months elapsed from the time of Claire's death until the inquest was called. It would take another sixteen months perhaps longer before it would actually take place. The inquest was announced on April uth, 2003, at a press conference held by Jim Cairns. It was originally scheduled for "later in the fall," but John was later informed by Dr. Cairns that it wouldn't likely happen until the winter of 2,004. But that season, and then another spring, came and went without any further word from the coroner's office. When several e-mails (from John, Brenda, and Paul Harte) went unheeded, John phoned Jim Cairns directly. Dr. Cairns apologized profusely for all the delays, citing a number of reasons for them: The complexity of the cases and the resulting substantial preparation required; an unusually high number of other investigations (including, as one major example, Toronto's SARS epidemic); and the fact that he himself was leading the investigation while at the same time overseeing his other responsibilities. He told John that it was
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unlikely the inquest would take place before the fall of 2004. (As this book was going into production, in late August 2004, the date for the inquest had still not been set.) The delays added yet another source of continuous strain on both families. "We just want to get this inquest done and over with," Barry Lasovich told me, "so we can get on with our life. It seems to be putting a hold on everything."
I can understand there's investigations to do and whatever; but, if it was some kind of a big murder trial or something like that, I'm sure it would have been done and processed through the courts already. Every day that this drags on it's just putting more and more anguish and fatigue onto the situation.
Barry let out a long, slow, deep breath, much the way John did so often during our talks. "I don't know," he muttered under his breath. "There's some days I just feel like taking the law into my hands and going down there and straightening a few people out." He sighed again, pausing momentarily. "But I know that's not the right thing to do." John and Brenda were no less frustrated by the delays, but there were many times during these latest months of waiting that they were consumed by the events around them. The inquest often felt like just another blip on their overcrowded radar screen.
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A month before their meeting with Jim Cairns, on March xoth, John heard from the College of Physicians and Surgeons of Ontario (CPSO); the Complaints Committee had finished its review of John's complaints against the doctors and residents, copies of which were attached to the letter. The twenty-four-page review was succinct but thorough. It was balanced in its consideration and assessment of the statements submitted by both parties (the two doctors and four residents on one side, John on the other), but, to John's surprise, the review's conclusions leaned heavily in his favour, agreeing with his position on every point of his complaints. The three resident physicians were cited for their inappropriate actions and inactions, particularly, the committee noted, "regarding the management of a patient following resection of a craniopharyngioma, including the diagnosis of diabetes insipidus and its treatment, and the proper monitoring and management of fluids/electrolytes." But the committee also acknowledged that "this lack of knowledge is not unexpected, given their role as trainees in a learning environment," and placed responsibility for dealing with such shortcomings squarely on the shoulders of their supervisor, the attending physician: "It would be expected that any lack of knowledge on the part of these residents would be identified and addressed by appropriate supervision on the part of the attending physician. Sadly, however, this did not occur in Claire's case." The attending physician was harshly criticized for failing "to meet his obligation to adequately supervise the care that was provided by his residents." The review reiterated his "overall responsibility
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for the adequacy of the care" that was provided to Claire. It concluded that the attending also "failed to avail himself of the specialized knowledge and support available from the endocrinologists." On the other hand, the review was equally critical of the chief endocrinologist for his failure to adequately supervise his two residents and to provide follow-up support. "The Committee is of the view that [he] should have taken a more active role in the management of Claire's case. . . . It should have been apparent... that [the attending physician] and his residents were experiencing difficulty adequately managing Claire's fluids/electrolytes, and that further involvement on his part was required to ensure that a proper balance was achieved." Concerning all four of the residents, the committee's decision was to instruct the College to communicate with their respective program directors "to ensure that they conduct a full discussion of this case, and address any knowledge or skill shortfall in their educational program." The decisions taken against their supervisors were more serious. Both doctors were required to appear at the College "to be cautioned by a panel of the Complaints Committee." In the attending's case, the caution would be with regard to "the management of fluids/electrolytes; the diagnosis of diabetes insipidus in post-operative craniopharyngioma; the supervision of multiple care-givers in complex and uncommon situations where knowledge cannot be assumed; and the supervision of residents in a tertiary academic critical care setting." In the case of the endocrinologist, the caution
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would address "the adequacy of post-operative endocrinology orders, particularly in a complex case where the knowledge of attending physicians cannot be assumed, and the adequacy of his follow-up post-operative care."
A month after the CPSO review was completed, John's CNO appeal came up. A hearing was convened by the Health Professions Appeal Board, where his complaint against Claire's attending nurse went before a three-person tribunal. John and Brenda attended the hearing, which took place on April 9th, just one day before they met at Jim Cairns's office and were informed of the inquest. John's submission, which he presented to the panel with Paul Harte, contended, first, that the CNO investigation was seriously flawed. Despite John and Brenda's obvious insights on what happened to Claire on the day she crashed, neither parent was interviewed, or even contacted, by CNO investigators. "That was our opening point," John said, "and the three panel members just went 'Pardon?' They're all furiously writing away, with that bored bureaucratic look, and . . . snap. Up go the heads looking at me over their glasses, looking over at the nurse's counsel, looking at the College of Nurses rep sitting at the back of the room. . . . 'You weren't interviewed?' I said, 'No.'" John's second point concerned the attending nurse's evasive comments about when or if she had alerted the physicians on Sunday afternoon, when Claire's condition
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was worsening. The College's investigation, John felt, had not pressed enough to get a definitive answer. "They asked her, 'What time did you call a doctor?' 'Well, the first time I saw the doctor was at about 8:30 in the morning at rounds.' 'No, when did you call the doctor?' And she wouldn't answer. She kept ducking around it, and her lawyer helped her duck it a couple of times. So they just threw their hands up and quit asking her and said, 'Fine, we'll move on.'" John was certain he already knew the answer. "There was no evidence of any physician being contacted. There's no documentation, there's no pages in the paging records, which I have." His records also included statements from both the attending physician and his resident, which had been submitted to the CPSO. "The physicians both said no one called us. No physician saw that kid till seven o'clock that night." John was looking for answers to some crucial questions. If one of the doctors was called in earlier, why didn't he respond? Conversely, if one of the physicians wasn't called, why not? The CNO hearing failed to provide them. "The College's decision was so biased," John said. "It was unbelievable. I was just stunned when I read the original decision."
Here's a physician saying you didn't call me, the resident saying you didn't call me, the paging records saying you didn't call me and the College says, "Well, there's evidence that says she did call a doctor" What evidence? That was what we said at the appeal what evidence? Show me the evidence. Is there a doctor's note? No. A paging record? No. Are there any orders written? No.
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Where's the evidence? We kept saying to the nurse's lawyer, and to the panel, "There is no evidence. Yet the College says,'Well, there's evidence that says she did.'Well, where?"
The panel agreed, eventually, that John's appeal was valid Almost eight months later, John received a letter informing him that the Appeals Board had overturned the College's decision. This in itself, he told me, was something of a victory. "It's been sent back to the College, which is really, really profound. It doesn't happen." Then, in March 2004, he got the results of the second investigation. It came as another form letter and another big disappointment. "The original decision of the Complaints Committee was to issue the member a letter of caution." Its second decision was to issue to the nurse "a reminder . . . concerning your complaint about her nursing practice." John's only remaining course of action would be the inquest, which, he expected, would explicitly address the questions regarding the nurse's actions, "I've given her an opportunity to come clean with us, a couple of times," John said. "She wanted to meet with us, and I said, 'No, first we need to talk about when you called the physician.' And she just won't budge on it."
The Claire Lewis-Justin Lasovich inquest was front-page news on April nth, 2,003, but it wasn't until several weeks later that the full story behind it Barry calling John, John
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confronting Jim Cairns was brought to light. On May ioth, the Spectator ran two stories. The first "Benign Brain Tumour Surgery Halted" was a front-page report announcing that Hamilton Health Sciences had placed a moratorium on craniopharyngioma surgeries "at least until it receives the results of a review being conducted by external experts." According to Jim Cairns, the action was "volunteered, and that was entirely the appropriate thing to do." The second story was an in-depth feature on the events leading up to Justin's death and the subsequent dealings between Barry and John that solidified the case for holding an inquest. Three days later the Spectator ran another front-page story "Hospital's Top Doctor Never Told of Boy's Death" in which Dr. Andrew McCallum described how he heard about Justin's death from Jim Cairns. "I think it would be fair to say I was very surprised and very concerned," McCallum said. In fact, Andy McCallum, together with Margaret Keatings and other senior HHSC staff, were still reeling from the aftershock. An internal investigation of Justin's case had been launched immediately. HHSC also organized a larger, broader review that was undertaken by an external task force. "We had a team come together,'1 Margaret Keatings explained "a physician, intensivist, a nurse manager of a pediatric icu, and a manager of an adult icu and do a comprehensive review of the icu."
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The fact that we had two deaths that we weren't immediately made aware of, and one following one that was high profile, we had questions, especially going into the inquest are there things that we should be looking at and changing now? There's no point in waiting for a coroner's review and recommendations. If there's things we need to be fixing, we need to be fixing them right now.
Over the ensuing months, Margaret worked alongside Andy McCallum and Susan Smith compiling the new data. "Now we have pages of recommendations our earlier review of Claire's care; our second review, of Justin's; the external review of the icu; plus the family's recommendations." The family recommendations Margaret referred to had come from none other than John Lewis. He had been working on them over a period of several months; he wrote his first draft in April. He was prompted to submit them to HHSC in part because he was impressed with senior management's genuine efforts to "get it right this time." He was also encouraged by Paul Harte to take this direction "the high road" and to work proactively, within the system. In one of John's periodic phases of cynicism and despair, Paul had confronted him about the choices that lay before him. "Tell me what you want, and as your lawyer I'll help you get there, but the choice is up to you. If you truly want change, you need to work with people, not against them." Paul had told him it was important, too, for his own sanity, his own peace of mind, to remember that not a single individual involved in Claire's care, and certainly none of the hospital's administrators, had set out to intentionally hurt Claire.
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That conversation, John told me, struck the right chord. "You can really make some change here, you can really make a difference or you can stay angry for the rest of your life." The conversation reminded John of an encounter some months earlier with another grieving parent.
I met a fellow whose daughter died at Mac seven years ago when I met him, she'd been dead seven years and he's probably the angriest person I've met in my life. Because she shouldn't have died, things were done wrong, there was no apology and no inquest And there should have been. And he's just fit to be tied, still. And meeting him, talking to him, I thought, "Well, John, where do you want to be in seven years? Do you want to be here too? Or do you want to be somewhere else?"
John developed a list of nineteen recommendations, each of which included a detailed rationale. When he finished his draft, he sent it to Philip Hebert and asked for his feedback. Philip was pleased not only with the document but also to see John taking such a positive initiative. Since the time they first met, Dr. Hebert had tried to encourage him along much the same lines as Paul Harte to find something constructive to take from this tragedy. "He was so angry and so discouraged before," Philip said, "so pessimistic about things changing. I was quite surprised to see that he was willing to work with the profession on taking this forward. Although, in another way, I was not surprised, because I felt at some point he would want to do something." Dr. Hebert made some minor corrections and suggestions, then sent the
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draft back to John with a wholehearted endorsement. "Among other things," he said, "there was the educational component, and I was very pleased to see that, because I think, when patients are seriously harmed, that harm is made worse if people don't learn how to prevent them in the future, and one thing is educating fellow health care professionals." "I think the key is education," John said. Looking at it from the perspective of a parent and a nurse, his recommendations ran the full gamut educational in-services following an adverse event, ongoing training to keep staff abreast of the latest products, techniques, and safety-related matters. As both a student and a teacher, John knew the importance and the formidable challenges of creating and maintaining a learning culture.
You go through school, then you get thrown into a hospital, and you get an orientation by someone who's maybe been in nursing for thirty years, but that doesn't necessarily make them a great nurse. So you're flung into this situation with very little orientation or even worse, now, as the health crisis increases and nursing gets less orientation. And then to continue an education while you're working is difficult, and most people don't. A lot of people are lazy. They don't want to work, and they don't want to work on an education.That's in any industry, not just health care, it's i a lot of areas in our society.They won't, unless they have to, unless you have a book on the floor that says you have to attend this many workshops in a year, and it's going to be attached to you seniority, and to your job. You hate to have to get that way, but I really don't see people voluntarily lining up to spend lunch hours,
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or part of a day off doing some education. People go because they have to.
John now felt ready to broach the subject of his recommendations with Margaret Keatings, and instead of sending an e-mail he phoned her. After nearly a year of correspondence, it was time, he felt, for Brenda and him to meet in person with Margaret and Andy McCallum. His call was also prompted by the fact that he'd heard from Paul Harte that Dr. McCallum was about to leave HHSC to take up a new posting in Kingston, Ontario. John was hoping they could meet before he left. Margaret was delighted and slightly overwhelmed to hear from John: "It was just kind of out of the blue."
It wasn't "I'm ready to meet," or"! know I haven't wanted to meet for months, but now I do," it was just sort of like "There's a few things that I'd like to talk about, there's some feelings I'd like to share, questions that I have, and I think I need to share them, and are you available?" and of course we were available. We'd have freed up anything in our schedule to do that I don't think I have ever felt the sense of relief I had that day after I got off the phone with him.
The four of them met the next day. John had his list of recommendations, which he left with them, but they hardly talked about them at all. More than anything else, John and Brenda needed Andy and Margaret to hear from them, face to face, about what this ordeal had been like for them. The
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agonizing hours leading up to Claire's death. Arranging for her funeral. Dressing her. Cremating her. John and Brenda took turns, sharing their experiences, their pain, from that awful weekend in October 2.001, through the months of the hospital's silence and inaction, to the debacle of their meeting at the hospital a year and a half earlier, to the letter of apology, to the inquest. "It was very emotional," Margaret Keatings told me. "We cried. It was very cathartic. It was kind of sad. It was emotional, it was sad, but yet it was like this big weight had been lifted." The meeting had the same effect on John and Brenda. It felt like another wall had been broken down; it was liberating for them, not merely to discuss the case, or the hospital's progress, but simply to express their feelings. And just as it had been in John's encounter a year earlier with Dr. Kraus, when John had experienced his heartfelt, tearful apology, hearing Margaret's and Andy's apologies, seeing their tears, was far more gratifying to John and Brenda more meaningful and more powerful than any letter. More such meetings were to follow. Not long afterward, John agreed to meet with Nancy Fram, Director of Critical Care Nursing. She also cried through the entire meeting. She, too, apologized for what had happened in the hospitalparent meeting in February 2002,. She thanked John for the opportunity to see him and to be able to tell him face to face not only how much she regretted her actions, and those of her colleagues, but also how much the incident had changed her. She was a different person, she told him a better person. And a different kind of manager, a better one: more
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sensitive, more responsive, more vigilant, and more caring. A few weeks later John and Brenda met with the resident physician under whose care Claire had died. When they agreed to the meeting, he drove in from Montreal to see them. He apologized. He admitted that it was wrong of him not to have checked in on Claire much earlier, and much more often, than he had. He told them that he had relived those hours, and those mistakes, a thousand times over. He, too, had children, four young children, and he said he could not imagine the pain that this had caused them. He was so sorry, he told them. For John and Brenda, that was enough. They thanked him for coming. They forgave him. Not all of John's dealings with Hamilton Health Sciences were so positive. At Barry Lasovich's request, John had attended a meeting at HHSC in August 2003, essentially to set the stage for Barry and Cindy's civil suit. The hospital's representatives were still not prepared to acknowledge their culpability for Justin's death; despite the parallels, his case was much more complex than Claire's, and it was far from evident who bore responsibility to what extent. Cindy Lasovich did not understand the lawyer talk, but she knew exactly what she wanted. "This can't happen again," she told the room. "I will do whatever I can to make sure this never happens again." Her remarks, John told me, set the tone for the rest of the meeting. It was far different from what he and Brenda had experienced. Even as the lawyers set out their respective positions, John could sense a different attitude, a more cooperative, collaborative approach, on both sides of the table. "There was a real sincerity there,"
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he said. "Even the hospital's lawyer, who's supposed to be defending his client at any cost, seemed to feel the same way." The Lasoviches did not come away from that meeting with anything resembling an outright admission of responsibility from the hospital, but as John pointed out there was dialogue, and everyone was working together. "That alone, I'd say that's progress."
Paul Harte called the same week to discuss the details of a settlement on the civil lawsuit. John and Brenda signed off on the agreement on August 4th, 2003. This marked the successful conclusion of one more battle, but like many of the others this one, too, was a hollow victory. "The civil suit just left us sad," John said. "Just totally sad. You sign all these releases, and they all say over and over again the physicians, the nurses, no one did anything wrong. There's no satisfaction in a civil suit. It left us just sad."
John had remained in contact with both Donna and Jack Davis and Chris and Susan Atkinson. Much of their dialogue was about providing mutual support, but when these families' cases began to falter John did what he could to help. The Davises hadn't been able to find a lawyer with the experience or resources to advance their case in Saskatchewan. In the fall of 2002,, John had referred them to Paul
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Harte. Paul agreed to take on their case, but after his preliminary review he had to advise the family not to pursue it. The problem was with Saskatchewan's legal system, which, historically, had never awarded more than ten thousand dollars in damages in a wrongful death case involving a child. The harsh reality, Paul explained, is that the courts base their decisions almost entirely on legal precedent. "These things are not written by legislatures," he explained. "Damages are decided on the cases that were decided before." Paul knew that it would cost the family far more to prepare their case than they could ever hope to recover. "I'm still of the view that there's no doubt that nurses provided substandard care in that case, but the fact of the matter is, it would be very, very expensive twenty, thirty, forty thousand dollars just to get the opinions as to whether or not it caused their son's death." The Davises were devastated by this latest in a long series of setbacks. "The money wasn't an issue," Donna told me. "We don't want a penny, but on the other hand we can't afford $150 or $200,000. And that makes us feel very unworthy. Like how could we say that our son isn't worth that? He is." Shaken, visibly upset, Donna stopped to compose herself. "It's very hard to live with. There's obviously negligence. There is nobody that has read Vance's chart that hasn't said there is obvious negligence. And yet we can do nothing." Chris and Susan Atkinson did get their inquest, in the fall of 2003. They had a very good lawyer, and he had prepared an excellent case, but the jury's ruling went against them. Despite overwhelming evidence to the contrary, the verdict
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was that their daughter Ashley's death was caused neither by the drugs nor by the care she had received but by the already deteriorating state of her health. Here again a procedural issue became a major factor in the jury's decision. The court system in New Brunswick, unlike those in most other provinces, does not allow cross-examination of witnesses; the testimony of one of the hospital's expert witnesses, which was highly questionable, therefore went unchallenged. "Because there's no cross-examination out in New Brunswick," Paul Harte explained, "the jury decided that the drug didn't cause their kid's death even though three experts said it did. The jury chose, essentially, to accept the opinions of the treating physicians over the experts. It was peculiar." Chris and Susan were stunned and enraged by the outcome. Their only recourse was to pursue a civil lawsuit, but now they faced a new quandary how to pay the substantial legal fees they'd already incurred. "Our lawyer was very confident through the inquest that when it was over it would give us the leverage to sit down and work out a settlement. But because of what came out from the verdict, that basically squashed that idea." Once again the community rallied behind the family. "I can't say enough about this community and this area, St. John and Hampton," Susan effuses. "There were people that put posters up from as far as St. John to Sussex to try and help get some money together and help us with our financial plight. There was some money that was raised that helped a little bit, but we ended up refinancing our home and stuff like that to pay for it. But it was the gesture, it was amazing."
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But there was one further complication: the province's statute of limitations required that Chris and Susan had to file the civil suit within two years of Ashley's death. "We were going to run out of time," Susan said. "Our lawyer believed in our case, but we didn't have the money to fight and he didn't have the money to finance it. So we were stuck." Just two weeks before their limitation, in February 1003, Chris was talking to John. "It looks like this is it for us," he told him. "We won't be able to take it any further, because we can't find a lawyer who'll take our case further for us, because of the expenses." "Why don't you talk to my guy?" John suggested. They did talk to Paul, and he did take their case. The civil suit was filed on time, and the lawsuit went forward. With any luck, Susan told me, the family will be able to recover all the money this ordeal has cost them and in some way repay the people across the province who helped them out. "We're hoping that everything does end up going our way, so that we can take some of it and give a little bit back to the community."
Over the course of the winter of 2003-04, John did a fair amount of freelance work for Paul Harte's firm, researching medical charts for some of his other cases. Then in June he was hired on a term contract as a research consultant for the Toronto-based Institute of Clinical Evaluation Studies (ICES), which is attached to the Sunnybrook/Women's Hospital and
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Toronto's University Health Network. This work also entailed reviewing medical charts and organizing the data for use in ICES research projects. The downside extensive travelling across the province, working in hospitals again was physically and emotionally strenuous. John also began to think about forming his own consulting business, doing similar projects for other lawyers and institutions. Throughout this time, he had remained in contact with other families he'd encountered, taking on the unofficial (and unpaid) role of family advocate. In short, John was not only a busy man, but he was overextending himself, not only with Claire's case but with those of other families and, because of the nature of his freelance research work, with an ongoing stream of other cases. The strains on his marriage were intensifying. His relationship with Jesse was suffering. As the summer progressed, it all began catching up with him. In the midst of this, John took it upon himself to initiate another fund-raising project for Revolution Hope. It was too much. It pushed him over the top. In March of that year, the group had held its first fundraiser, a combined dance benefit and silent auction. It was a huge success, attracting over five hundred people and generating more than seven thousand dollars. This event was initiated and sponsored by a friend of Brenda's, Beverley Cayton-Tang, who operates DanceScape, a ballroom dance studio in Burlington, with her husband, Robert. The work required in organizing and managing the event was shared by all members of the group, but Brenda found herself doing
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much more than she should have. When John suggested doing another event selling gift cards and soliciting donations at Hamilton's annual community fair, Festival of Friends she wanted no part of it. "I just felt burnt out," she explained. "I felt like I needed a break from Revolution Hope for a while." There was another, more pressing reason for Brenda's reluctance. "At that time, we also started having a lot of problems with Jesse, so I just wasn't keen to get quickly involved in another project. I don't know how much effect this had on Jesse. I mean, we're not only spending time grieving for Claire but focusing on this whole benefit for Claire and fund-raising for Claire where does that leave her?"
In April, she just decided one night after school that she wasn't coming home, and didn't come home, all night. Didn't call, nothing. We hadn't a clue where she was. We were frantic. And we were about to go to the police that morning and file a report We went to the school first, and lo and behold there she was, at school. And her explanation for the whole thing was, well, we were too strict She was trying to send us some kind of message.
With or without Brenda, and despite their problems with Jesse, John proceeded on his own. "John went to two meetings that I didn't go to," Brenda explained, "and he was upset that I wasn't going and didn't really understand that I wanted to take a break from it." Most members of the group were involved, but John was not satisfied. Brenda had "bailed" on him, he felt, and now the rest of the group were
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not doing enough to help pick up the slack. Grudgingly, he took on more and more of the responsibilities. Together with all the other things he was doing, it proved to be more than he could handle. By the time the festival happened, on Friday, August 8th, John was a walking time bomb, an accident waiting to happen. Merchandise sales and donations were disappointingly low, and far short of John's expectations. The event was a disaster, he thought ill-conceived, inadequately planned, and badly managed. Brenda (who ultimately did participate) thought differently. "I don't think it was such a bad idea, but I think what happened at the same time was John was in crisis, Jesse was in crisis, our family was in crisis and that's why it was a disaster."
Nothing was right with him at that point. I couldn't do anything right, he was upset with me no matter what I did, he was upset with the booth, and the way things were, and basically he just kind of freaked out. He had a meltdown when we were down at the park and ended up walking home. Karen and Sharon were there, and he freaked out. He was actually being quite strange I've never seen him be that bizarre. Karen came up I'd gotten in the car with him and she came over and wanted to know if I was okay, going off with him, because he was so angry.Then he just got out of the car.and stormed off. I stayed down at the park and talked to Karen for a while. And then by the time I came home, he had left and left his wedding ring on the table. Jesse was here by herself, and she was upset and crying.
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. BEWARE THE GRIEVING WARRIOR
After another of his long hiking jaunts, John once again ended up at the door of St. Joseph's emergency ward. This time it was more serious. This time, he told the nurse, he feared for his life. This time he was admitted. "I actually ended up in a psychiatric ward for a week ended up in there, not as an outpatient, I was an in-patient. I think that was the price for doing all that stuff, and I think it all came to a head her death, the advocacy, the inquest, the lawsuit, the marriage, the family, everything. Everything just imploded, in a big way. I got into the hospital, I think for my own safety. I had enough insight to say I need a time-out here."
There's a price for every decision and everything we do. There's consequences and a price to pay, and I felt for the longest while, by doing these recommendations and partnering with these people, that I was being disloyal to Claire somehow. And this is a real gut, emotional thing this is a nonintellectual stance, this has nothing to do with the mind it's purely "These bastards killed my daughter, and here I am trying to figure out how this won't happen again." And I'm paying for it in my emotional health, my physical health everything around me is suffering. Our marriage was in serious trouble, this family was in serious trouble. I didn't have a career or a job to speak of. And here I was, trying to figure out how to prevent these deaths from happening again.
Brenda went to the hospital the next day. "I was still quite upset and angry with him," she said, "but I think he felt really remorseful and really bad, and he wanted to come home and work things out and get better. And there was
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some sense of realizing that he needed to chill out a bit, or he was going to lose me, too, and then there really wouldn't be anybody,"
He wasn't letting anybody in.This anger was just radiating, out of control, like keeping everybody away. He was angry at everybody, so he wasn't talking to any friends, he wasn't talking to any family everybody had "abandoned" him. Doc had abandoned him, his sister.... He phoned Jim Moore and told him off, he phoned Doc and told him off he was pissed at everybody.
John was hurting, his psychiatrist believed, but he was not at risk. Suicide was not an issue in this case, but he told John it was clear that he was in a state of deep depression. He immediately began to look for the right medication a difficult process, as anyone who has experienced it, either personally or through someone close, can attest. Many drugs exacerbate the anxiety. Many have side effects that seem worse than the illness itself. Until the right drug, or combination of drugs, is found, and until the right dosage is established, the experience can be frustrating, disorienting, and at times harrowing. The next step, adjusting to the medication, can be just as difficult. John was stabilized within a couple of days, and by the end of the week his condition had improved to the point that he could return home, but his adjustment period was just beginning. "Things got strange," Brenda said. "He was trying to adjust to this medication and was suffering really serious side effects." His behaviour was erratic and unpredictable.
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One day he would seem calm and relaxed; the next he might suddenly revert to his anger. His thoughts, as Brenda quickly realized, were often clouded by paranoia.
One night I went out to see a friend, and he was bugging me when I went out when was I going to be home and I said, "I don't know, 9:30, 10:00." Anyways, we were having a really nice evening, talking and stuff, and I ended up being there a lot later than I thought He phoned me out there. He was upset. So finally I left and came home. It was late, probably 12:00 or 12:30, when I got home, and I came into the house and my heart sort of just froze in my chest. It was so eerie and creepy. I opened the side door, and I could hear the piano. And I mean nobody's played the piano since Claire died. He was sitting at home alone, in the dark, with his head leaning against the piano, plunking the keys. He wasn't well at all. He was really wrapped up in his grief, and he was in a really serious depression.
Gradually, John did adjust to his meds, but his emotional state only seemed to worsen. "They stabilized him in the sense that he wasn't getting paranoid, and wasn't suicidal, but he wasn't anything. They were really awful drugs. It was like he was just a shell of himself."
It was like living with an eighty-year-old man. And he looked like hell. He was tired all the time, he never felt rested. He'd go to bed and watch TV, and he'd just pass out He could sleep for twelve hours and wake up and not feel any more rested. He was just drugged. And he was puffy, he'd put on a lot of weight, unhealthy
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weight had a lot of fluid edema and stuff and he did not look good. I was really worried about him.There was no passion in him anymore. 1 couldn't talk to him; he was very hard to relate to. He was kind of like on a little island there. If I reached out to him, 1 could get him to respond to me, but most of the time he was just not there.
Brenda began to feel she would suffocate under the ominous, oppressive weight of John's anger and sorrow and, now, inertia. "He was more and more remote, and more and more withdrawn, and I got to the point that I hated being with him."
I just got tired of dealing with how angry he was all the time. Because of what it did to me. It's so depleting of your energy when you're with someone who's angry all the time, and he was angry like all the time. We would go for a walk, and it just felt like . there was no "us" anymore.There was no talking about anything else that was going on; it was always talking about the hospital and what those fuckers did.
When Brenda tried to find some time away from him, with her own friends and her own activities, John became resentful. "He was angry with me, too," she explained, "because I was trying to start to do stuff, and he wasn't ready to do anything. He didn't want to see people. He wanted to be home all the time and sort of withdraw into this house and not go anywhere and not do anything."
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Brenda became involved with spiritualism. When she began to meet with psychics and spiritual mediums, John told her he was concerned about her state of mind. Brenda was not to be dissuaded.
I started getting involved with a spiritualist church. I was going there once or twice a week and doing a lot of reading on it He couldn't understand what I was getting out of this, and why I was going there, and he was really bothered, The whole basis of their belief is that the spirit lives on, nobody really dies, and they have the ability to communicate with spirits. Which sounds pretty weird, but... .There's that, and they do healing, hands-on healing, almost like therapeutic touch.
Jesse's behaviour, in the meantime, was spiralling out of control. After finishing grade nine with her lowest grades ever, Jesse careened her way through a long, tumultuous summer. "She'd gone crazy that summer," an exasperated Brenda told me.
The summer was her going out and not coming home, or me getting up to feed the dog and taking him out at ten in the morning and finding out she had left in the middle of the night Because it was summertime, she was sleeping in the basement, and she was just walking in and out of the house whenever she felt like it Or bringing people home. We'd wake up, and there'd be people sleeping in our basement, or she'd be gone.
By September, John and Brenda had had enough of Jesse
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leaving home and coming back at will, and they gave her an ultimatum: play by our rules, or go live somewhere else. Jesse chose to go her own way. By now, she was seeing very little of her old friends; she'd taken up with another girl, who was two years older and far more experienced at living on the street. As John and Brenda saw less and less of their daughter, their fears for her safety and well-being grew. "It made us feel like we were going from the parents of two children to no children," Brenda said.
She was out of the house there for a while, and she came home one night with this crazy girl she was hanging around with and that was a really awful feeling, too, being scared of your own kid and who she's with. John was out shopping, and she showed up and wanted her stuff. I don't know if they were on drugs that night, but they were acting really aggressive. She was pounding on the door, and 1 said, "No. When you want your stuff, you can call us, and we'll get your stuff together." Because I didn't want this girl and her just coming in the house. She started smashing on the door, she broke the glass in the front door, and I said, "I'm going to call the police." She said, "Go ahead, call the fucking cops, we don't care." And they were making this huge scene. And of course all the neighbours are up, looking out their windows, and she's standing out there in a screaming rage, calling me a slut and all kinds of wonderful names. And John finally came home with the groceries, and then the police came, and she finally left with this kid. She had dyed her hair black that was the first time I'd seen her with her hair black and it was kind of like who is this kid? It was not my child; it was like
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demon possession or something. We had a lot of problems with theft. She ran away with this other girl and her and Jesse were like gasoline and fire togetherThey broke into our house on the second anniversary of Claire's death and stole over a thousand dollars worth of stuff out of the house. Broke a window and came in. And they just did nasty stuff took all my jewellery ripped all my clothes out of my closet, stole a bunch of John's favourite CDs stuff they wouldn't listen- to, like Ray Charles....
Brenda was at the end of her wits and running out of patience with the whole sad situation. "I was fed up with her, I was fed up with him, I thought, 'You know, this is nuts.'"
I had a job and a home, and I'm trying to keep this family together and I thought, "Why am I doing this? Nobody else cares." And I started packing stuff up. I phoned a friend of mine and said, "Can I keep some stuff in your basement in your house? I don't know what I'm doing, I may be moving, I might be looking for my own apartment" We were living at least a month without any pictures on the wall. I'd taken stuff off the piano, off the shelves, packed it up. It looked like we were moving.
In November, Jesse suddenly decided she'd had enough. She wanted to come home. "I'd seen a lot of people," she told me, "grown-ups, almost my parents' age, in one-bedroom apartments, on welfare. And I didn't want to end up like that."
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I didn't want to end up in a foster home. I lived in a shelter; I've seen foster kids, I didn't want to end up like that. I thought,"! need my parents. My parents nurtured me my entire life, why am I doing this now?" I needed to go to school, and I needed a healthy place to stay, a nice, warm place, and so I just called them.
On the same day Jesse called home, Brenda's mother died unexpectedly. It was another sad, painful day for everyone, but for Jesse, who'd been very close to her grandmother, the tragedy also seemed to provide another warning sign, another wake-up call, and it brought her to her senses. "It was a turning point," Brenda told me. Actually, as Jesse explained, although it was the beginning of her turnaround, it did not happen all that quickly or quite so easily. "I got home, and we tried turning things around. It didn't work the first time, but I didn't get kicked out. We just fought a lot, and then the second time it worked." It took longer for John to come around, so much so that Brenda questioned if he ever would. "I was beginning to wonder if it was the drugs or if a part of him was just real gone and not coming back. That maybe it was part of him that was lost and that we'd also lost whatever it was between us. I didn't know what to do." John had been in an almost constant state of lethargy and inactivity through the fall and most of the winter. He, too, was becoming anxious to stop taking his meds. "He told the psychiatrist at least three times he wanted off these drugs," Brenda said, "and the psychiatrist kept saying no. He wanted him to be on them for a year." Finally, in February, John
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took it upon himself to gradually wean himself; by the end of March, he had stopped completely. It took nearly eight months, from the time he went to St. Joseph's until the following spring, before John began to look and act like himself again. In early May, Brenda told me she was finally starting to feel optimistic about their prospects. "The difference in him," said Brenda, "and the difference in our relationship, in the last six to eight weeks, is remarkable. And finally, after all this time, I have a little bit of hope again, that we are going to be okay."
John took a philosophical view of his breakdown. He saw it as something inevitable; something drastic had to happen, something had to give. He acknowledged the need for medical support, but he attributes his survival to something deeper. "Silence," he told me. "A lot of silence. I needed my own time to grieve and feel that silence she left. How quiet her piano is, how quiet this house is - her voice not here, and her not here just experiencing that. Being home during the day, alone, and just really embracing that silence. The silence left by her." That silence, John explained, has a counterpart: stillness. At first, it took a very powerful drug regimen to end the turbulence of his life, but even then, despite the hazy distortion of the drugs, he began to sense the clarity that comes with finally slowing down, finally stopping. He recognized, from the beginning of his treatment, that this stillness was what he
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had needed, and what he had resisted, for much too long. A week after leaving the hospital, he wrote a new entry in his journal, something he hadn't done in several months. It began bleakly, like so much of his earlier writing; he despaired the futility of "getting on with one's life."
In the midst of it all, one is encouraged to reinvest in life again, join the land of the living, and leave the grief and its heavy baggage behind.To leave the heavy baggage by the side of the road, like a small unwanted animal is left, pushed from the car on a dark, lonely country lane, to be forgotten, not lamented over Were it so simple, wouldn't I just do this, drop off this baggage? Could it only be so simple.
On he wrote, about his lack of faith, and religion, and hope. But suddenly the writing changed. He turned away from torments past and present, and instead, for the first time in at least two years, he looked ahead.
So, what's the answer to all this? Just how does one go about reinvesting in life again? How does one come to trust God again? How does one recapture faith? What is the "fix" for this? My best guess is that this must be an inside job. It's an idea borrowed from John Hiatt, a singer-songwriter who used the analogy of a "slow turning, from the inside out," to describe his recovery from drugs and alcohol. He also coined the phrase "it's an inside job" when describing the same. He simply speaks to a recovered/renewed faith in whatever faith may be. My intuition tells me the secret may be in learning to be still,
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learning to listen to the subtle, sublime whispers that caress my heart from time to time. Learning to be still may involve spending some time in the desert, that desolate emotional place I've been before, where the silence clangs in my ears like a bell tower, the wind constantly in motion kicking up dust devils, the glaring, everpresent light, a blanket of stars bright enough to cast shadows. Learning to be still will probably involve feeling Claire's absence, touching and experiencing that hole in my life, my heart, and my soul. Being still will involve listening to the silence she left behind, like the silent swish made by a screen door closing on a hot summer's day, leaving her standing there, behind the screen, barely recognizable in the afternoon-darkened kitchen. The stillness will no doubt bring a new level of pain, a pain I've yet to really experience. Learn to be still. Stillness is difficult when all I feel is restless, with an indefinable longing, a thirst that won't abate, and an obsession as powerful as the act of breathing itself. Learn to be still. Learn to reach out and touch hen experience her absence, taste her absence, smell the vacuum that is now hen experience this death to the depths of my very essence then let it go It's an inside job, a slow turning, a long healing.
The healing, for all three of them, seems finally to have begun, but the grieving, and the pain, have not stopped. Brenda tells me it never will. "I think a lot of people's perception is that, as time goes on, the pain lessens and lessens, and it doesn't."
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One of the counsellors we saw, when she was talking about grief, likened it to a room.in a house. It becomes a place maybe you don't go to as often, but when you go there the pain is just as fresh and just as intense. Her birthday this year and all that week, feeling it coming it was just deep pain. I spent the whole day on her birthday trying to imagine her at fourteen, and what she'd look like and ' what she'd be like, and then I had to go back to work the next day. And thank God we have a bathroom at work that's private, because I went in there, and I could cry. So it's there. It gets more and more that, in order to live, I guess you have to choose not to go there, for your survival. But it's not that the pain gets any less. I miss her every day, and I think of her all the time.
The Lewis family will never stop missing Claire, nor do they want to. They will endure the pain of mourning, but so too will they feel the love that comes with remembering her. Not many others understand this. This is why the family needs each other. This is another of the reasons they want their story told. "There's people who won't go around that area," Jesse told me. "They'll just be like, 'Oh, we can't talk about that, we don't want to make her sad.' It kind of bothers me. It feels like they're trying to forget her, and like I'm trying to remember her. I don't ever want to forget her."
They can bring up Claire, It doesn't make me sad. I like when people do that and when they try and remember things. Me and my parents do that all the time. Sometimes it's sad, but most of the time, it's like, "Oh, do you remember when we did this?" "Oh,
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you remember when me and Claire broke this?" My mom and me would start laughing, and rny dad. Me and Claire used to fool around and break stuff all over the house. I like remembering hen
This will never change either. This is life after Claire. She is gone, but she is here; her presence is with them always. This is the part that each of them, together and in their own very private and very special ways, will cherish forever.
Sometimes when I have a really hard time at school or a hard time with somebody something's going on with me and my friends or whatever I just sit in my room, and I can feel hen It sounds weird, but sometimes I can feel her giving me a hug. And I had this dream, a couple of weeks ago. I was with my best friend at the mall, and we were walking around, and I said, 1 forgot my sister!'And I ran somewhere, and I saw hen Right now she'd be thirteen and I saw her; and she looked older Her face looked older; she had longer hair, and she'd lost all her little baby fat, and she was all old. It was so strange. Like she sent a picture of'her to me, in my head. I've tried to draw it on paper but I can't. It's stuck in my head.
In early January 2004, John got a phone call from the distressed mother of a young girl who had just died in the emergency ward at McMaster Hospital. She told John she knew about him through all the newspaper articles about Claire. "It was a story that really struck her," he explained.
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"Then, when her daughter died, unexpectedly it shouldn't have happened she called me up and said, 'What do we do now?"3 There was a meeting coming up with hospital officials, the woman told John, and she asked if he would accompany her and her husband. Of course he would, he told her. Although he was in the midst of his recovery, and still under heavy medication, he agreed without a second thought. John reviewed the child's chart prior to the meeting and came fully prepared to argue her parents' case. What he did not expect was the attitude of the hospital's review team: Instead of evading or denying their culpability in her death, they took full responsibility for the tragedy. John couldn't believe his ears. "They immediately opened with 'There are things we could have done better,'" John said. "The Director of Children's Care listed a couple of the mistakes, then he handed it over to the Director of Emergency Services, and he went point by point down the chart. He said, 'We should have done this, we should have done this, we shouldn't have done this.'" John was stunned by their candour and openness. The discussion could not have been more different from the disastrous meeting he and Brenda had attended two years earlier. John was in for another surprise. One of the physicians in the meeting was Dr. Charles Malcolmson, whom John remembered from that former meeting. "Correct me if I'm wrong," John had said to him repeatedly challenging him, taunting him but Dr. Malcolmson hadn't said a word. He didn't speak during this meeting either, but when
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it ended he went over to John to speak with him privately. "I just want you to know," Dr. Malcolmson told him, "this is an entirely different hospital. I barely recognize it. It's an entirely different place and it's all because of you." John thanked him, and the two men shook hands. John was deeply moved. Afterward John sat in the lobby with the young couple to talk about the meeting. "They were wanting my impressions of it," John said. He told them his overall conclusion was that the hospital had already done almost everything he would have expected. "They really did a good job," John explained. "They didn't fire a doctor over this that's not going to happen but they talked to the doctor, talked to the nurses, they've got some new protocols in place and some new standards coming into the emerg. That's good stuff to hear. And the chart review was impeccable." They spoke briefly about next steps, including whether the couple should pursue a civil action. John offered to meet with them again and told them he would help out if he could, but he thought they should give it a little more time. Besides, he told me, the little girl's birthday was coming up. He knew, much better than they did, how hard that day was going to be for them.
John called Margaret Keatings to tell her about the meeting. She was pleased to hear that it had gone so well and especially to hear it coming from John Lewis. It reaffirmed to her
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that this time their efforts really were producing tangible results; this time they really were getting it right. "It's the whole philosophy," she told me. "It's the culture. There's absolutely no question that we owe it to patients and families to share with them, to clarify, to explain."
If there's any error at all, if there's anything that suggests that we need to do any kind of a review, we immediately connect with family or the patient. We may not have the answers right away, but if we have any concerns we will tell them we're doing a review, and we'll get back to them.The whole culture around disclosure and apology, it's just there, it's totally part of our culture now. And everybody knows about it. We have a written policy, but it's more than that there's no debate anymore, it's not a legalistic environment. It's the accountable. caring. It's more humanistic. It's more
Margaret also agreed with Dr. Malcolmson's comment that John deserved a great deal of the credit for the hospital's transformation. "I think where John has made the difference," she told me, "was making us so acutely aware of the pain that families experience. Not only in their situation, because their child died, but this whole seeming lack of accountability in the system and the failure to acknowledge that she died and she shouldn't have died. And the view that we're supposed to be caregivers, and care extends beyond the hospital experience." John had made a difference in her life, personally and professionally, she told me, and she believes that many others can learn from him too.
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I would love to see John and I at the same podium talking about this experience. I'd love us to be at a national or international conference talking about all of this the things we did wrong, how that felt for the family, the journey that we took together I think it would be amazing.
Whether John remains involved in health care as an advocate, a critic, an activist is very much open to question. He continues to work as a research consultant, and he has started his own consulting company, but what happens beyond this he cannot say, When I ask him what he thinks the future holds in store, there is a long pause. Then he begins to talk once again about his journey in the desert. Has the journey really ended yet? Has he found what he needs before he is able to return? He does not think he has. The analogy of his journey into the desert, "that desolate emotional place I've been before," stems from a series of lengthy conversations last year with the chaplain at St. Joseph's hospital. Despite this and other biblical references, these talks, as John warned the chaplain most emphatically, were not going to be "religious." "I shed my Christianity roots years ago," John told him, "and I worked hard at it. Please don't bring them into these conversations and screw this up." The chaplain laughed,. "No problem. I'll leave my Christian roots at the door, and we'll just talk as human beings."
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The parables provided the two men with a metaphorical framework, a point of departure, for discussing what was ultimately John's journey toward inner healing and inner discovery. "There's a repetitive image in the Old Testament, even the New Testament," he explains. "It might have been the real desert, or it may have been an emotional desert. Jesus had the forty days and forty nights. Moses goes into the desert, Isaiah goes into the desert everybody, at some point, goes into the desert and comes back a changed person, comes back with a message of hope, generally."
We never get a description of what it's like in the desert.There's mentions of beasts now and then night creatures and beasts that are going to tear your flesh and rip your clothes - so it's not a great place to be. And it's lonely it's isolated. And usually there's a crisis that sends them into the desert. It's not something they willingly decide one day: "I'm going to head off into the desert here and see what happens.'They're forced, or there's some crisis, something happens, to send them into the desert. I'm not sure if I'm yet out of the desert that isolation, and that reflection, and that quiet time, the silence, all the imagery that goes with a desert. It's far from over, I know that. I think Brenda and I both are kind of living in our own little desert right now. In our own way. Trying to figure out how to live as a couple. And how to live with this child's death between us learning how to be quiet, how to be silent with each other; how to drive along in the car and just hear the road, and just listen to that silence and be okay with it, and be okay with each other I think that's what we've needed to do. 1 think, if we're not okay with each other,
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we're not okay with the rest of the world around us either And how can you be parents to Jesse when you're not okay with each other? It's all these different levels. And day to day. We're working on it. I think it's a work in progress, for probably the rest of your life. I'think you change, and hopefully we change as we move along, in new experiences and new things, but the grief is always going to be there. It's not going away, and I don't think I'd want it to, because it's part of my connection to hen part of my attachment to her I wouldn't want it to go away. I'd be concerned if it did. "Learning to live with it" sounds like it's something you're just tolerating. I'd rather incorporate it into my life. "Incorporating" seems a little more positive. It's part of the fabric of my life, and part of who I aim, part of my view of the world and how I'm going to view the world, how I experience the world, how I experience others, and how they experience me.
It was not the response I expected. I thought John would want to talk about the issues, the enormous change that was still needed political, legal, cultural, societal, systemic, individual. I decided not to push the point. It struck me that perhaps the choice isn't his to make. Perhaps it will come from someone else, a complete stranger, a messenger bearing tidings from back here, in what we call the civilized world. I remembered John telling me about a woman who came up to him in a supermarket. "Are you John Lewis?" she asked. "Yes," he answered curiously. She took his hand and shook it vigorously. "I recognized you from the pictures in the newspapers," she told him. "I've
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followed all the stories about your daughter and your family and the hospital and everything, and I just want to say thank you for everything you've done." Now she was crying. "You keep going," she said. "You keep doing what you're doing." John started to cry too, and he thanked her for her kindness. The two of them stood together for just the briefest of moments, and then she disappeared back into the crowd. Perhaps it will take something like that, I thought, to bring John back. I hoped it would. I hoped it wouldn't have to be another phone call, from another heartbroken parent. Another death.
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n August 2,004, John and Brenda accepted an invitation from Margaret Keatings to meet again with her, Nancy Frarn, and Dr. Peter Steer, from McMaster Children's Hospital. The final draft of the hospital's patient safety recommendations had just been completed, and Margaret wanted the Lewises to be among the first to see it. The report was overwhelming in its size and scope, but it was its content the actions that had taken place, the new policies and programs and above all its spirit, its underlying sense of conviction, that brought John and Brenda to the verge of tears. Each of John's nineteen recommendations, without exception, had been adopted almost verbatim and incorporated into the study's five core areas: family-centred care; patient safety; clinical practice standards; development of a separate, dedicated pediatric icu (PICU); and a strong focus on patient safety and family-centred care within all human resources orientation, training, and education
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programs. Several of the report's recommendations related directly to Claire's case, and to Justin Lasovich's case, and to the subsequent experiences of both families. No children would be moved without their records accompanying them. All pediatric neurosurgery would be performed (pending installation of new equipment) at McMaster, so that no child would need to be transferred postsurgery from another facility. PICU staff would at all times remain under the supervision of a specialized pediatric intensivist, four of which had been hired; a pediatric emergency physician had also been recruited. Junior and inexperienced residents would be supervised by an intensivist during the day and by a qualified critical care medical assistant during the night. The ratio of nurses to patients was reduced to 1:1. A new DDAVP monograph was implemented, together with a new protocol and guidelines for post-operative management of craniopharyngioma excision. Furthermore, a new process was implemented for debriefing all complex and difficult cases, thus assuring that icu staff are fully informed and prepared. All nursing staff completed self-assessment learning modules on nursing standards regarding medication administration and documentation. Nursing staff also participated in a four-hour education session on fluid and electrolyte balance for post-op neurological patients. Stringent record management practices were implemented to ensure consistent briefing and monitoring (drugs, equipment, infusion schedules, and much more) as well as effective transfer of accountability during patient transfers and shift-to-shift reporting.
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POSTSCRIPT
As part of their training and orientation, nurses and other staff are advised never to discourage parents from staying with their children; in fact, facilities were put in place to accommodate family members for extended visits and overnight stays. Orientation for new employees includes information modules that stress the importance of communicating with families and respecting their concerns. A patient safety committee was formed, chaired by the CEO, together with three subcommittees: clinical patient safety, medication safety, and equipment safety. HHSC'S risk management program was reviewed independently with a view to assessing, among other things, the need for separating risk management and patient services. A new disclosure-of-harm policy was implemented, together with a new system for managing incident occurrences reported by patients and visitors once again emphasizing the need for staff to listen to patients arid families. HHSC hired a full-time clinical ethicist and planned to recruit in the fall of 2004 a full-time patient-family advocate.
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The Claire Lewis Foundation An Invitation to Readers
For those individuals or their employers wishing to make a donation or otherwise support the cause, John and Brenda Lewis wish to advise you that Revolution Hope is alive and well. As discussed in this book, all activities and plans were put on hold in the summer of 2003 because of the circumstances in which John and Brenda found themselves; however, the Lewis family and most of Revolution Hope's supporters remain committed to its vision of bringing the arts to underprivileged children. After just two local fund-raising events, the group collected nearly ten thousand dollars. This money is currently being managed by the Hamilton Community Foundation (HCF), one of Canada's largest and oldest community foundations. Established in 1954, the Foundation today manages over 250 funds, with combined assets of over $84 million. In 2002, investment income generated from these funds resulted in the distribution of almost $4 million in grants.
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HCF normally charges a fixed management fee of two percent of monies accrued. All remaining funds raised will be invested directly in Revolution Hope's trust fund. In keeping with HCF practice, distribution of grants from Revolution Hope may commence once the fund has accumulated a minimum of $25,000. Revolution Hope's original goal was to build a permanent endowment fund of $i million and to use the annual interest accrued on this amount to fund arts projects across Canada. For more information, visit the Revolution Hope web site: www.revolutionhope.com To make a donation, or for more information, contact: Hamilton Community Foundation 100 King Street West, Suite 400 Hamilton, Ontario, L8p IAZ Telephone: 905-52,3-56oo/E-mail: information@hcf.on.ca Or visit the HCF web site: www.hcf.on.ca
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All offers require 2 year agreement.** Offer ends 10/5/11. Credit card required (except in MA & PA). New approved customers only (lease required). $19.95 Handling & Delivery fee may apply. Package pricing may vary in certain markets. To the extent that there is a 2011 NFL season, customers will be automatically enrolled in and receive 2011 NFL SUNDAY TICKET and NFL SUNDAY TICKET To-Go at no additional cost. ^BILL CREDIT/PROGRAMMING OFFER: IF BY THE END OF PROMOTIONAL PRICE PERIOD(S) CUSTOMER DOES NOT CONTACT DIRECTV TO CHANGE SERVICE THEN ALL SERVICES WILL AUTOMATICALLY CONTINUE AT THE THEN-PREVAILING RATES. Free SHOWTIME for 3 months, a value of $38.97. Free HBO, Starz, SHOWTIME and Cinemax for 3 months, a value of $135. LIMIT ONE PROGRAMMING OFFER PER ACCOUNT. Featured package names and prices: CHOICE $60.99/mo.; CHOICE XTRA $65.99/mo.; CHOICE ULTIMATE $70.99/mo. Prices include a $26 bill credit for 12 months after rebate, plus an additional $5 with online rebate and consent to email alerts. Upon DIRECTV System activation, customer will receive rebate redemption instructions (included in customers first DIRECTV bill, a separate mailing, or, in the state of New York, from retailer) and must comply with the terms of the instructions. In order to receive $31 monthly credits, customer must submit rebate online (valid email address required) and consent to email alerts prior to rebate redemption. Rebate begins up to 8 weeks after receipt of rebate submission online or by phone. Duration of promotional price varies based on redemption date. FREE HD OFFER: Includes access to HD channels associated with your programming package. To be eligible for Free HD you must activate and maintain the CHOICE XTRA Package or higher and enroll in Auto Bill Pay. Also requires at least one (1) HD Receiver and activation of HD Access. Account must be in good standing as determined by DIRECTV in its sole discretion to remain eligible for all offers. In certain markets, programming/pricing may vary. 2011 NFL SUNDAY TICKET OFFER: New customers taking CHOICE XTRA and above will be automatically enrolled in 2011 NFL SUNDAY TICKET at no additional cost. 2011 NFL SUNDAY TICKET regular full-season retail price is $334.95. NFL SUNDAY TICKET will automatically continue each season at special renewal rate unless customer calls to cancel prior to start of season. In the event the 2011 NFL season is delayed, there will not be a substitute offer or credit for missed games. In the event the entire 2011 NFL season is cancelled; the customer will receive 2012 NFL SUNDAY TICKET at no additional charge and the automatic renewal will begin with the 2013 season. Subscriptions cannot be cancelled (in part or in whole) after the start of the season and subscriptions fees cannot be refunded. 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DIRECTV Whole-Home DVR service requires a DIRECTV Plus HD DVR, a Whole-Home-enabled HD Receiver for each additional TV, HD Access ($10/mo.), DVR service ($7/mo) and Whole-Home DVR service ($3/mo). For more information, visit directv.com/wholehome. *Eligibility for local channels based on service address. Not all networks available in all markets. Access to DIRECTV CINEMA programming available at no additional charge is based on package selection. Actual number of TV shows and movies will vary. To access all DIRECTV CINEMA content, an HD DVR (HR20 or later) or DVR (R22 or later), DIRECTV CINEMA Connection Kit and broadband Internet service with speeds of 750 kbps or higher and a network router with an available Ethernet port are required. Visit directv.com/cinema for details. Programming, pricing, terms and conditions subject to change at any time. Pricing residential. Taxes not included. 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Beware The Grieving Warrior

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Beware The Grieving Warrior

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^ !" ^_ ^ "\ I {WH~i >/ | 'if f

LARRY HICOCK WITH JOHN LEWIS

ECW PRESS ecwpress.com

WE ARE NOT ALONE

OUT IN THE OPEN

FAR FROM OVER POSTSCRIPT

*W . *>. &U- T/ w w B 'i. -*

BEWARE THE GRIEVING WARRIOR

Claire, John, Jesse and Brenda at John's graduation ceremony

At Grant Avenue Studio the Wednesday before Claire died

Claire and Jesse at John's best friend's wedding, July 2001

Claire loved cats and loved to draw and colour

Ladybug Halloween cat, which became Revolution Hope's mascot

Claire did have a really good sense of humour . . .

BEWARE THE G R I E V I N G WARRIOR

chapter 1 ""-jr"1 ( ** ) \ ""\ i * ~ > ^

IEWARE THE GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE G R I E V I N G WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE: GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE G R I E V I N G WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

THE END OF THE WORLD AS THEY KNEW IT

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

BEWARE THE GRIEVING WARRIOR

THE END OF THE WORLD AS THEY KNEW IT

>~; ,~.' \ ii IT' C' ? _"- j T V

BEWARE THE G R I E V I N G WARRIOR

BEWARE THE GRIVING WARRIOR

A PROFOUND SENSE OF DUTY

A PROFOUND SENSE OF DUTY

BEWARE THE GRIEVING WARRIOR

A PROFOUND SENSE OF DUTY

BEWARE THE G R I E V I N G WARRIOR.

A PROFOUND SENSE OF DUTY"

BEWARE THE GRIEVING WARRIOR

BEWARE THE GRIEVING WARRIOR

CONNECTING THE DOTS

BEWARE THE G R I E V I N G WARRIOR

CONNECTING THE DOTS

BEWARE THE, GRIEVING WARRIOR

BEWARE THE G R I E V I N G .WARRIOR

~ "V i" -^ O'"c -t \ \ /- L r >] ^j x ^

he more I heard about what had happened, what John

We'd just drive

. THROUGH A LONG DARK SILENCE

BEWARE THE G R I E V I N G WARRIOR

W . >. &U- T/ w w B 'i. -*

-\ L-jN'H I151 ^'i IcI S/\N J