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A CHILD'S PREVENTABLE DEATH

A STRUGGLE FOR TRUTH,

HEALING, AND CHANGE

LARRY HICOCKWITH JOHN LEWIS

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ECW PRESS

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Copyright © Larry Hicock, 2004

Published by ECW PRESSzizo Queen Street East, Suite zoo, Toronto, Ontario, Canada M4E IEZ

All rights reserved. No part of this publication may be reproduced, stored in a retrievalsystem, or transmitted in any form by any process — electronic, mechanical, photocopying,

recording, or otherwise — without the prior written permission of the copyright ownersand ECW PRESS.

NATIONAL LIBRARY OF CANADA CATALOGUING IN PUBLICATION

Hicock, LarryBeware 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.

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Editor: Adrienne Leahey Cover and Text Design: Tania Craan

Production and Typesetting: Mary BownessPrinting: Gauvin

This book is set in Sabon.

The publication of Beware the Grieving Warrior has been generouslysupported by the Canada Council, the Ontario Arts Council, the Ontario Media

Development Corporation, and the Government of Canada through the BookPublishing Industry Development Program. Canada

DISTRIBUTIONCANADA: Jaguar Book Group, 100 Armstrong Avenue, Georgetown, ON, L7G 554

PRINTED AND BOUND IN CANADA

ECW PRESSecwpress.com

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FOREWORDS

THE END OF THE WORLD AS THEY KNEW IT n

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A PROFOUND 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 SILENCE 69

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A L I N E IN THE SAND 85

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H O N O U R I N G CLAIRE 129

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WE ARE NOT ALONE 143

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THE MARK OF G R I E F 167

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OUT IN THE OPEN 181

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FAR FROM OVER 217

POSTSCRIPT 2.59

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LETTERS ARE EXCHANGED 101

chapter 11/

THE KILLER BLOW 197

Chapter 1

TABLE OF CONTENTS

chapter 1

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by Larry Hicock

S t's said that writers don't choose their stories. I can't say ifthis 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: Thisstory chose me. The idea for this book came long after I'dmet John and Brenda Lewis. It built up gradually as Johnbegan describing some of the experiences he and his familyhad been through and still were enduring. Some of hisaccounts were heartbreaking; others were infuriating. Somewere intensely personal; others felt universal. Each incidentseemed more compelling than the last. For me, the turningpoint came in February 2003, when John told me aboutsomething that was not only shocking but also downrightastonishing (see chapter n). "You couldn't make this up ifyou tried," I remember telling him. "No, you couldn't," hesaid. "Nobody would believe you." The seed had beenplanted, and now it was firmly rooted: This was a story thatneeded to be written. I didn't think John could do it, but Iknew that I could.

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BEWARE THE G R I E V I N G WARRIOR

, On Monday, October 15*, 2001, I returned to my home inHamilton about seven o'clock after spending a long day inToronto. I was barely in the door when my wife, Irene, toldme that our thirteen-year-old daughter, Delaney, had comehome from school that day with the saddest news she'd everheard. Jesse Lewis, her classmate and close friend, had losther little sister. Eleven-year-old Claire Lewis had gone intothe hospital for surgery, but, as Delaney's teacher had toldthe class, something had gone terribly wrong, and Claire haddied that morning. The same day, after school, Jesse hadcalled Delaney. She'd told her about the funeral and asked ifshe would go to the first visitation, the next evening.

I had met Jesse's parents only a few times, either at theirhouse, when I went to collect Delaney after a party or sleep-over, or at ours, when one of them came to pick up Jesse.And I had never met Claire, or even seen her, until that nightat the funeral home. I wish I could say that I found some-thing comforting to say to them, but I didn't. I stuttered andstammered and barely spoke two words. I don't think itreally hit me until that moment, seeing the expression ontheir faces, how I would have felt if it had been my little girllying there. Would I have been able to stand there, greetingpeople, acknowledging their heartfelt but awkward wordsand gestures, while she lay just steps away? I could not imag-ine getting through it.

Irene and I did not see John and Brenda until four monthslater, at a parent meeting at one of the high schools we were

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FOREWORD

considering for our daughters for the coming year. Wenodded hello in the hallway as we made our way into theauditorium, and after the meeting we exchanged a few briefwords. We agreed that night that the four of us would gettogether. Over the next few weeks, I saw John a couple oftimes, again when I went to collect Delaney. "We should dosomething," I would say. "Yeah," he'd say, "we should.""Let me know," I would say. "Yeah, I will," he'd answer. Ifelt that he was sincere, that he did want to meet with us, butit was obvious that they simply weren't ready. We finally gota phone call from them in June. The school's closing cere-monies were coming up, and Brenda invited us to go outwith 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 homefor tea. One of the things we heard about that night wasRevolution Hope, a trust fund set up in Claire's honour toraise money to support arts programs for underprivilegedchildren. Not long after this visit, John invited us to attendone of the group's meetings, after which I became a memberof the organizing committee.

It felt good to do something that would enrich the lives ofother children. I extended this line of thinking toward thebusiness end of what I thought Revolution Hope needed todo in order to be successful. I emphasized that the mosteffective fund-raising campaigns focused on a positive,uplifting message. John agreed, but he seemed to be unableto separate Revolution Hope's goals from his own desire toeffect change in the health care system. This could turn into

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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 emo-tionally charged social, legal, and political agenda. Johnconceded the point. He made a genuine and concerted effortto "stay on message" (a crass and mercenary phrase hepicked up from me), but he simply couldn't do it. Ironicallyenough, neither could I.

It was through those discussions — how to pursueRevolution Hope's marketing goals while at the same timeholding in check John's desire for radical, system-widechange — 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 experienceto the larger picture, the more I came to appreciate the sig-nificance of his advocacy. Ultimately, that agenda —• John'smission — would take priority over fund-raising. RevolutionHope would have to wait. Something had to be done to drawmore attention to the cause of personal and organizationalresponsibility, not only for Claire's case but for all preventa-ble deaths. Part of getting that message out — changing thesystem, changing the attitudes of health care professionals,making people aware of the scale and urgency of medicalerrors — would involve telling this family's sad and frightfultale. 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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the first time I met with John to record our first interview. Hewas forthright, articulate, and expressive not only intellectu-ally but also emotionally. The same day he also gave mecopies 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 writ-ing — his poetry, his eulogy for Claire, and his journal — thatresonated. It was raw, unfiltered, straight from the heart. Itwas obvious that John's role in the book had to be larger, soJohn got another proposal from me: He would be not only aprincipal subject in the book but also a collaborator.

From that point on, we worked as partners. Over the nexttwo months, we recorded roughly fifteen more hours of con-versation. In July, my family and I moved to Montreal, afterwhich John and I remained in contact by phone and e-mail.When the book was commissioned and the writing proceededin 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 Johnand on two more occasions during the final stages of the writ-ing. In the interim, we also corresponded frequently bye-mail. Brenda was less involved than John, but when we didtalk she was every bit as candid; her perceptive comments andobservations have been invaluable. Jesse also agreed to aninterview. Like her parents, she too was honest and forth-right, 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

5

FOREWORD

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me toward several important sources of material, and shedmuch light on the broader aspects of medical ethics and dis-closure. Margaret Keatings took on the unenviable task ofrepresenting Hamilton Health Sciences Corporation. BillFrid, the Lewises' brother-in-law, offered his account of thefamily's ordeal at McMaster Hospital. Susan King providedthe background on a story about Claire featured in a HealthCanada newspaper supplement. For their input on the storyof Revolution Hope, I thank Karen Moncrieff, JohnMcGuire, Jim Moore, and Sharon Mackinnon.

Special thanks to Paul Harte, John and Brenda's lawyer,for his extensive and most informative input and for hisreview of and comments on the final manuscript. On a per-sonal note, I also wish to thank my wife, Irene, for thededication and zeal with which she tackled the editing andproofreading of my preliminary drafts. For final editing andpreparation, and for their thoroughness and enthusiasm, Ithank Adrienne Leahey, Dallas Harrison, and ECW publisherJack David. I also want to acknowledge the efforts of RobertMackwood, at Seventh Avenue Literary Agency, whosepatience and dogged determination in the face of adversitysaved this book on at least two occasions when I was con-vinced it couldn't be done.

It has been a great honour to work as closely as I havewith John and Brenda Lewis on this book. I am deeplyindebted to three others who talked to me about their uniquerelationship with John and Brenda and about their ownexperiences with adverse medical events and preventabledeaths: Donna Davis, from Carievale, Saskatchewan; Susan

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Atkinson, from Hampton, New Brunswick; and BarryLasovich, from Port Colborne, Ontario.

Studies on the issue of patient safety Have been publishedaround the world. (Canada's first-ever report on patientsafety was released in June 2004, just as this book was beingcompleted.) These studies offer disturbing facts and figuresabout just how dangerous a hospital can be. They pointtoward 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 tooeasy to lose sight of what the statistics really are. It is tootempting to take comfort in the trend lines — assuming, ofcourse, that they show improvements. But if ten thousandCanadians die this year as a result of preventable medicalerrors — down from, say, eleven thousand last year —should we congratulate ourselves? What if one of those tenthousand was your child, your spouse? Would you findsolace in knowing about all the countries in the world thathave a worse safety record than Canada does?

Perspective changes everything. And that, as I came torealize during the process of working with such people aslisted above, is really why this book needed to be written.Here you will see the microlevel — not provincial statisticsor national forecasts but the lives of individual people. There

FOREWORD

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BEWARE THE GRIEVING WARRIOR

are many talented and selflessly dedicated doctors and nursesin this world. Only a small number of them are guilty of neg-ligence or malpractice, and only a few of them (or so wehope) do not disclose their mistakes. But take a hard look atthe consequences, not at the percentages. Look at the faces,not at the numbers. In the particular microcosm shown inthis book, the victims are innocent children. Their families,coming as they do from diverse walks of life, have little incommon but the pain and heartbreak and grief that still per-vade their every waking moment.

It's enough to make a grown man cry. Maybe it's enoughto bring out the warrior in all of us.

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Jesse and Claire at their AuntMary's with Raggedy Ann dolls

A digitally enhanced picture ofClaire from her cousin's wedding,

July 2001

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

The Sunday before Claire died. John was reassuringher everything would be fine . . .

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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 beforethe 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 ourThanksgiving dinner, a week before she died . . .

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Jesse did this acrylic oil painting taken from Claire's school pictureon September 22, 2002

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Another cat in "Claire's CatCollection" — scuba cat being

my personal favourite

Ladybug Halloween cat, whichbecame Revolution Hope's mascot

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

Claire wrote this prayer five days after she receivedher diagnosis of a brain tumour

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This prayer with artwork was done by Claire shortlybefore 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 simplywith a pencil, for her mother

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by John Lewis

' he death of a child has a profound impact on every facet,: of life — spiritual, economical, psychological; friends,

family, and marriage. The very nature of a child's death cre-ates what is known as a "complicated" grief, a grief thatdoes not follow a predictable course such as can be measuredor observed in other types of death. A child's death raisesunimaginable stresses and horribly real feelings of guilt andresponsibility for the surviving parents, not to mention theindescribable sense of loss. A preventable death such asClaire's increases these feelings exponentially. And if a pre-ventable death is combined with an unwillingness by thehealth care providers involved to take responsibility for theiractions, it leaves in its wake an anger of unspeakable magni-tude. Anger can create change; anger can also destroy andobstruct any hope of change. My advocacy was born out ofanger, hurt, and loss. To that end, Beware the GrievingWarrior carries my hopes for change.

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FOREWORD

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It's incredibly sad that a wonderful, loving, creative, intel-ligent child had to die in order to effect change, but Claire'sdeath has brought change not only to our immediate lives. Iknow that it has and will also bring change to the largercommunity around us. Claire's death fuelled an advocacythat burned like a prairie grass fire out of control, pushingme to the centre of issue after issue. Fearless and naive, Istumbled to the front lines unabashed and alone with myweapon of choice, the truth.

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t begins the instant you hear the words, before they evenregister: Your daughter has a brain tumour. From that

moment on, once the shock wears off and you grasp theirmeaning., their implications, your world is a living hell. Theweight of it does not lift, does not subside, does not get theleast bit easier to deal with, cope with. It is there in all yourwaking hours and beyond, and it remains until suddenly youlook up and see the surgeons coming out to the waitingroom, heading in your direction. They have been in the OR,and you have been out here, for almost nine hours. As theydraw closer, you see that their gowns are covered with blood,her blood, but you do not flinch; you hardly notice it. Yourattention is riveted to their faces, their eyes, until finally yousee what you've been waiting for, hoping for: that faint smile.

It took eight weeks for John and Brenda Lewis to reachthis moment. Now it was here at last, now it was over. Theirlittle girl was going to be all right. The procedure took longerthan expected, but it was what doctors call "uneventful." In

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II

AS THEY ENEW IT

chapter 1

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IEWARE THE G R I E V I N G WARRIOR

fact, it all went remarkably well. Dr. Hollenberg said hethought they got ninety-eight, maybe ninety-nine, percent ofthe 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'sawake, alert, she's moving, talking, and she wants to knowwhen you're coming in to see her."

John thought Dr. Hollenberg looked misty-eyed as hespoke to them, but he couldn't be sure; maybe it was just hisown tears.

Dr. Reddy looked happy too. "I put five fingers up, andshe counted them," he explained. "Both eyes are fine and herspeech. She's absolutely fantastic."

John and Brenda were overcome with joy and relief andgratitude. Could there be a better feeling in the whole worldthan this? They felt the tension and fear dissipating — simplyvanishing in the blink of an eye — after all these long daysand weeks. Yet even as they began to relax, they clung to thetwo surgeons' every word; they studied every gesture,weighed every nuance. They had waited a very long time toget to this moment, and now they were going to savour everysecond of it.

And then suddenly, moments later, they were with Claire.She looked terrible; even John, a registered nurse with plentyof post-operative care behind him, wasn't prepared for this.Her face was swollen, her eyes badly puffed. Her head waswrapped in cotton gauze, but the incision, running across thetop 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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THE END OF THE WORLD AS THEY KNEW IT

a great profusion of tubes. Claire looked weak, groggy, butwhen they came to her side she opened her eyes and gavethem a smile. Is there a more gratifying sight than this?

Some ten hours earlier, Claire's eyes had been fixed onher father's eyes as the attendants had wheeled her bed downthe corridor. John was wearing a mask and greens, just likeeveryone else, and they were going to let him stay with Claireuntil she went under. "When you get into the operatingroom, just look at me," he told her. "There's lots of people,lots of equipment, but I'll bend down nice and low so youcan see me."

When they got inside the OR, he leaned over and foldedhis arms across her chest and rested his head gently on hishands so that his face was right up close to hers. They talkedand made jokes about the cats — Pongo, the biggest, fattestcat you ever saw, and Duff, Claire's own pet, probably atthat very moment sound asleep in his favourite spot, underher bed. Then they sang a song together, with silly lyricsthey'd made up. Claire was laughing and smiling almost tillthe anesthetics took over; one of the OR nurses remarked onthe ease and smoothness of her induction.

And now John smiled; she was back, aware if not yetalert, and there he was, standing over her just like before.He thought of Claire's poem, one of several she'd writtenjust a few days earlier: "The warmth of you wrappearound me / cheers up my soul / When you stand with me Iam not afraid. . . ."

Claire had been very afraid, at the beginning, during thetests, 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'swhat was causing her headaches and vision problems. Itwasn't malignant, which meant it wasn't cancerous, it wasn'tgoing to spread, but it did have to be removed. Still, thesewere frightening words — "operation," "brain surgery,""tumour" — to an eleven-year-old child.

Brenda and John were determined to remain honest andopen with Claire about the procedure, to help bolster herstrength, to help her confront her fears before they grew toolarge. But what did they themselves know about this thingwith the strange long name slowly growing inside her head?Almost nothing. The surgeon offered little insight; perhapshe assumed that John's background (as a registered nurse)made it unnecessary. He showed them the CT scans and theMRI film, but he talked more about the surgery than thetumour itself. John decided that his first priority was to learneverything he could about Claire's affliction. He wasemployed on a permanent part-time basis by HamiltonHealth Sciences Corporation, the same institution that wastreating Claire. At the same time, he was also a part-time stu-dent at McMaster University, working toward his bachelorof science degree in nursing. As a result, he had full researchprivileges, including access to a comprehensive array oflibrary and on-line resources. On that first day, as soon asthey left Dr. Hollenberg's office, at the McMaster UniversityMedical Centre, he stopped next door at the campus libraryto 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 slowgrowing. If not for its location, at the base of her brain, itwould be virtually harmless. But there, left unchecked, itwould continue to exert pressure on Claire's optic nerves,impeding her vision and perhaps even causing permanent,total blindness. And there were other risks: Craniopharyn-giomas adhere to a vascular structure called the Circle ofWillis, which encircles the brainstem, a kind of central junc-tion from which blood is delivered to each region of thebrain. The tumour can therefore impinge on any of a numberof neurological activities, including speech, sensory aware-ness, emotional and intellectual development, and motorskills. The tumour is also adjacent to the pituitary gland andhypothalamus, which produce most of the body's majorgrowth hormones; as a result, it poses particular develop-mental risks for preadolescents. Equally important, equallyobvious, and no less frightening, the location of the tumouradds great risks to the surgical procedure. The tumour iscomprised of either a tough cystic or a calcified material thatmust be scraped from the surface of the nerve. In the Circleof Willis region, an arterial bleed would be hard to locateand almost impossible to stop. The optical nerve, as just oneother example, is no thicker than a strand of hair; even theslightest cut could damage its functioning.

Given the delicacy and extremely high risk of the surgery,John and Brenda wanted a second opinion. Three weeks laterthey met with Dr. John Rutka, head of the neurosurgical pro-gram at Toronto's renowned Hospital for Sick Children. Dr.Rutka confirmed the diagnosis; he told the Lewises that he

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was going to be out of the country for two months but that hewould be happy to refer the case to one of his colleagues.

"If this was your child," John asked, "what would youdo?"

Dr. Rutka answered without hesitation. "I would trustHollenberg. He's probably the best neurosurgeon in thiscountry. And he's working with Reddy? Mr. Lewis, it doesn'tget any better. Hollenberg, Reddy — you're in excellenthands."

You're in excellent hands. Claire was in the room, onlyhalf-listening perhaps (by this point, she was sick and tiredof all the tests and examinations and doctors' appointments),but the words did register. She trusted her parents; she knewthey would always make the best choices and the right deci-sions. Didn't Daddy go to McMaster University, right nextdoor to the hospital? Didn't he work for Hamilton HealthSciences himself? They must be good places, then, mustn'tthey? The idea of an operation was still frightening, but shewas trying hard to be brave.

At first, John and Brenda did not reveal the full extent ofthe danger either to eleven-year-old Claire or to her thirteen-year-old sister Jesse, but they talked often, and as openly asthey felt they could, about what was going to happen toClaire. For the longest time, it seemed like Jesse didn't wantto know. "My parents would ask me did I have any ques-tions," Jesse said, "and I'd say no, and I'd get mad, becauseI was scared and worried, and I didn't think I wanted toknow, because I'd get even more scared." But on the eveningbefore Claire's surgery, the family had a special dinner

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together — take-out Indian food, extra spicy, one of Claire'sfavourites. After dinner, they recited the poems that each ofthem had written for the occasion. Then they had anotherlong 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, "andwe 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 alearning experience for all of them. And many times, Johnlater wrote, Claire was not the student but the teacher.

I spent a lot of time with her explaining the tumour — its loca-

tion, 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 avoid-

ance, without looking to others to fill in the blanks.

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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. "Howare 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 andBrenda. "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 inat Claire's side. Claire slept almost continuously, lost in thefog of the anesthetics, exhausted physically after this long,arduous day. The operation had been performed at theGeneral Hospital, a sister facility to McMaster (both are partof Hamilton Health Sciences Corporation, one of Canada's

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largest health care institutions). At that time, the Generalwas equipped with the best surgical microscope and imagingtechnology for this procedure; on the other hand,McMaster's intensive care unit had specialized pediatricresources. It had been decided, therefore, that Claire wouldbe moved to McMaster for post-operative care. She wastransferred by ambulance later that evening. John andBrenda accompanied her and stayed with her in the icu foranother few hours. Then, with Claire safely settled in andresting, they decided it might be a good idea to go home andget some rest. It had been a very long day, and there wouldbe many more long days ahead. John and Brenda wereexpecting to spend the next week or two taking turns at thehospital with Claire so that during her recovery one of themwould be with her at all times.

They left around 2, a.m. and got back by nine, togetherwith Jesse. Seeing her little sister for the first time after thesurgery was a frightful experience. "I could see the incisionon the side of her head, and that just scared me so much.There was blood in her hair, and there was stitch-work, butit 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 cutewith the hat, and one of her eyes was swollen."

Claire was still groggy and listless, which was not too sur-prising, but there was something else. Jesse was sitting closeto Claire when her behaviour suddenly began to change. "Myparents kind of stepped aside — they didn't go out of theroom or anything — and then, when I went to talk to her, sheturned her head all the way to the opposite side and then

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started just shaking. And that scared me so much." Clairewas twitching, sporadically and only slightly, but it wasenough to alarm all of them. John went looking for the nurse.

"What's going on with Claire?" he asked at the nursingstation.

The nurse looked up at him blankly. "Why? What'swrong?"

"She's twitching. She's flopping around like a fish out ofwater. It looks like she's going to have a seizure."

"Oh, no, no, she's fine," the nurse insisted. "The doctorswere just in, she's okay. No, no, it's not seizures."

Her tone was condescending — typical icu nurse mental-ity, John remembers thinking to himself: They don't treatfamily members as "partners" so much as a nuisance, to beput up with, tolerated.

This scenario — John looking for help, for answers, andthe nurse dismissing him — happened twice more. "She's notfocusing," he said at one point. "Have you noticed that?"

"She's fine," the nurse retorted. "I just checked her, she'sokay."

But Claire wasn't okay. According to her chart, at eleveno'clock that morning she had a full seizure. Jesse was sittingnext to her; one minute they were talking, hugging eachother, and an instant later Claire arched back and began toconvulse. Jesse screamed hysterically. While John ran forhelp, Brenda stood at Claire's side to keep Claire from fallingoff the bed.

The resident gave her Ativan, an anti-anxiety drug, andClaire began to stabilize almost immediately; the seizure

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lasted just three minutes. She was taken immediately to radi-ology for a CT scan. John called his sister and asked her tocome to take Jesse home; then he and Brenda went into thewaiting area outside the lab, just down the hall from Claire'sroom. They couldn't see Claire from there, but John couldsee the radiologist, through a little window, sitting at thecomputer. John watched his eyes intently, looking for achange of expression as the readings came up.

Moments later a resident came out to them with theresults: "She didn't bleed," she said.

"Thank God," John cried. Seizures, he knew, are fre-quently attributed to post-operative bleeding, one of themost dangerous risks facing Claire.

"She's fine," the resident continued. "Her brain is fine, sowe think it may be the iv fluids."

In simple terms, Claire was retaining more fluids than shewas releasing through urination, and the excess fluids dilutedher blood. The fluid overload resulted in a reduction in herserum sodium — the amount of sodium in her blood relativeto its water content. Sodium deficiency can lead to a conditioncalled hyponatraemia. Its symptoms range from dizzinessand disorientation to seizures or coma. Hyponatraemia iseasily corrected through an adjustment to fluid balance — areduction in water content to increase the proportionateamount of sodium. However, in a post-operative situation,particularly in the case of children, low sodium can causeserious neurological complications; constant monitoring offluid balance is therefore crucial. Another risk of fluid over-load 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 toseizure. A certain amount of post-operative swelling iscommon to most neurosurgical procedures, and even mildseizures, such as Claire's, aren't considered unusual. Whetherhyponatraemia was also a factor in her seizure was not dis-cussed. At this point, what seemed to be the most importantnews — and the best news — was that Claire was not bleed-ing. Her iv was changed to a normal saline solution, thusdecreasing her free water intake, and she continued to stabi-lize throughout the day.

That evening Claire was visited by her aunt and uncle,Brenda's sister Linda and her husband Bill Frid, and her four-teen-year-old cousin Rachel, who'd just driven in fromKingston 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 hesaw Dr. Hollenberg, whom he'd known for some years; Billis a social worker specializing in counselling young cancerpatients and their families, and he is a former HamiltonHealth Sciences employee.

Dr. Hollenberg told Bill he was extremely optimistic. "Ican never say a hundred percent," he said, "but it's as closeas you can get." When Bill asked about the seizure, Dr.Hollenberg told him, "Well, we expect those, but I thinkshe's out of the woods."

By Sunday, Claire appeared to be in excellent shape. Shespent the morning with John, Brenda, and Jesse — smiling,joking, talking, asking all kinds of questions. Could she seethe 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'sseizure the day before, Jesse had been reluctant to come backto the hospital, but now she was glad she'd come. She andClaire 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 adultsand their three children had a lively and very happy visit. Attwo o'clock, Claire said she was feeling a little tired, and shethought she should have a nap. The Frids were about to headback to Kingston, a four-hour drive from Hamilton, andJohn and Brenda wanted to take them out for lunch. Andwith Claire's recovery going so well, it was possible Clairewould be transferred from the icu to a regular ward as earlyas that afternoon. Brenda was also going to stop at homeafterward to pick up some of Claire's clothes, just in case.

It really is true, John tells me; it really does feel like whenyou're in a car accident. Everything happens so quickly, butyou see it all in slow motion. You watch it happen frame byframe, until suddenly the onrushing vehicle is right in your

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face, and you black out. Until that last millisecond, every-thing is a blur, like a dream or a nightmare, yet somehowevery detail is crystal clear, preserved vividly, permanently, inyour memory. This is how John and Brenda remember theevents of that Sunday evening, so precisely and accuratelythat John's own notes — about Claire's symptoms, changesin her condition and behaviour, and his recollections of whodid what when and how it happened — would later matchalmost 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 thehospital's terminology. Brenda knew the moment she sawClaire that she was in trouble. She was lying flat, with hereyes 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 alreadyfilled with fear. Jesse stood frozen in the doorway, too fright-ened to move. John looked past Brenda to Claire. Beforegoing in, he quickly took Jesse to the waiting room, thenwent 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, notresponding. At 6:30, she began to stir, rocking from side toside; then she tried to get up out of bed. While Brenda heldher down, to keep her from falling, John went for help. "Callsomebody now!" he yelled.

Several long minutes passed before the nurse came. Clairewas still struggling, pushing and pulling at John and Brendaas if to escape the discomfort, the pain. John recognized herbehaviour as a likely sign of intracranial pressure (ICP): herbrain swelling up and pushing against her skull. The nurseput in a call to the resident; the hospital's paging recordsplace the call at 6:43. At 6:55, there was still no sign of theresident, and he was called again.

The resident physician arrived at 7:00. By this timClaire had become quiet; she was no longer fighting, she waslosing her strength. The resident took Claire's hand andpressed against the cuticle of her index finger with a pen —no response to pain. This test is a standard measure of neu-rological activity; nonresponsiveness is an obvious indicationof trouble, but the resident took no subsequent action. In alater statement, he attributed Claire's condition not to ICPbut rather, as evidenced in her blood work, to an electrolyteimbalance. Initially, he advised the nurse to continue runningthe same iv. He stated that he subsequently orderedMannitol, an osmotic diuretic, in order to quickly flush outexcess fluids — however, there is no record of this order onClaire's chart. In any event, the fact remains that the residentwas in and out of Claire's room in less than five minutesdespite her obvious lack of improvement.

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At 7:10, John saw that Claire's breathing was starting toslow down, and he called the nurse in once again. "What'sgoing on?" he shouted.

The nurse told John that the attending physician hadcalled; he'd cancelled the order for Mannitol and insteadordered a normal saline solution.

When the nurse came back to the room at 7:15, Clairewas unconscious. The nurse began to prepare a ventilatorbag and oxygen. John looked at her, stunned. "You knowshe's going to stop breathing on us," he said to her quietly.The nurse didn't answer. She looked dumbfounded, Johnthought; she looked as frightened and uncertain and panic-stricken as they did.

By 7:20, Claire was down to four breaths per minute; thenormal rate is twelve to sixteen. When the nurse returned,Claire was drooling — another sign of ICP, indicating that theswelling of the brain is now pushing down against the salivaglands. 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, sheturned her head slightly toward them, and then she stoppedbreathing. 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 storageroom across the hall and took her inside to keep her awayfrom the fray. He knew what was going to happen, and hedidn'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 theRT worked to try to establish an airway. By now, the residentwould be there, and surely the attending physician wouldhave at long last made an appearance. "Where had hebeen?" John would later ask, but at that moment, alone withBrenda in a storage room, his only thoughts were on his littlegirl. He fell to his knees, sobbing. Brenda, crying hysterically,crouched down with him. "Oh, please, God, please," Johncried. "Please, please, please."

Moments later Claire's nurse opened the door. She toldthem that Claire was breathing again, that she hadn't beenwithout oxygen for too terribly long, that "she should beokay." For an instant, Brenda felt relieved. She wanted tobelieve that Claire really would be okay. She held on to thatfaint and fleeting wisp of hope desperately, though she knewas well as John did that Claire was not all right at all.

*J> CJ1

A few minutes later another nurse came into the storageroom and told them they couldn't stay in there. She escortedthem out of the ward, out into the corridor. Suddenly theywere locked out of the icu. They stood there — next to theelevators and the pay phones and all the people coming andgoing — waiting to hear what was happening to their daugh-ter. They waited for more than forty minutes. No one cameout to tell them what was happening; no one talked to themat 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.

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"Come with me," the doctor said. He charged toward theicu; then he kicked and banged at the door until it opened."What's going on here?" he asked the nurse. He reached forClaire's chart and glanced through it. Before going in to seeClaire, Dr. Hollenberg saw that John and Brenda were takento a meeting room.

Brenda recalls that moment as one of transition, from oneworld 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, whenDr. Hollenberg came back. Accompanying him was theattending physician, whom John and Brenda hadn't seenat all until that moment. There was a nurse with them, adifferent 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 themcame in quietly and sat down across from Brenda andJohn. No one looked them in the eye, no one spoke tothem, except Dr. Hollenberg. "Mr. and Mrs. Lewis," hesaid finally, his tears welling up, "I'm so sorry. Somethingwent terribly, terribly wrong, and . . . we think Claire isbrain-dead."

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Again, John recalls, everything shifted into slow motion.He looked over at the attending doctor, who abruptly turnedaway, unwilling or unable to make eye contact. After a longmoment 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 dona-

tion. Their response, Brenda recalls, was instantaneous despitethe 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 manda-tory twelve-hour waiting period before Claire could beofficially declared brain-dead. Candidates would be located,their doctors would be contacted, transplant teams would bemobilized, the organ harvests would commence, and at theappropriate moment life support would be withdrawn. Johnand Brenda agreed to return in the morning to sign the nec-essary papers. Again the room was still, the air filled with athick, 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 thatshe's dead."

Only a few moments went by before there was a tap onthe door. It was the hospital chaplain, who had decided,against their wishes, to join them after all. "I found thatreally irritating," Brenda said. "We didn't know him, and weweren't comfortable with him. And he kept looking at us likehe wanted something from us. Like he wanted us to come tohim, and it was like, 'Would you please back off and justleave us alone with this?' It was really not comfortable at allfor either of us."

When the chaplain did leave, finally, and only at John'sinsistence, they were suddenly faced once more with thesilence of the room and, harder still, trying to come to termswith what lay ahead. "I remember thinking I was never goingto be able to leave that room," Brenda said, "that if I left theroom it was going to make it real. I thought, I don't knowhow I'm ever going to get up on my own power and walk outof this room."

Then came the phone calls. The first one was to Janet.John told her she had to bring Jesse back to the hospitalright away. Even before he called, Jesse told me, she'dsensed that something had gone wrong. "My aunt came andpicked me up, and we started driving back, and I startedfeeling really, really sick to my stomach. I started feelingreally sick, and my knees were shaking — like I knew some-thing happened. And then when my dad called and saidcome 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 andLinda, who'd only just got back to Kingston. Bill remembersthe 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 anotherCT scan. When they brought her back to icu, John andBrenda went into the room to be with her. Already, Brendarealized, she looked different; even though she was stillbreathing, through a ventilator, she felt different. Already shewas cool to the touch; already Brenda had a sense that Clairereally wasn't there. This wasn't Claire anymore; it was justthe shell of her.

They stayed in the room, sitting with Claire, until Janetarrived, and then they had to go out to tell Jesse what hadhappened 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 thedoctors and the nurses, and I was mad at my parents,because I thought they should have done something, but Irealized that they couldn't — there's nothing they could havedone to bring anything back and make everything normal."

John felt angry too and helpless, unable to spare Jessefrom 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 wereleaving, 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 Fridsarrived 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 theliving room. "We lit some candles, we sat and hugged, had agood cry," Brenda recalls. After a while, John ended up infront of his computer in his office just off the living room.Bill joined him, and as the two of them sat talking Brendaremembers looking over at them and seeing John's face asthey spoke. She remembers hearing, for the first time, thewords 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'thave happened. "I hope you're wrong," he answered.

When Brenda heard John's words, she realized that sheknew it instinctively too. So did the doctors and the nursesand everyone else at the hospital who'd seen Claire thatevening. This horrific death should never have occurred. Butwhat now? What next? If this was true, that everyone knewwhat had happened to Claire, then all that remained to beseen was if — and how, and when, and under what circum-stances, and by whom — the truth would be revealed.

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cMo-fofofr 2

t must have been five in the morning before anyone turnedin, and no one actually slept. Suddenly the sun was rising.

Suddenly it was time to go back to the hospital. There weremeetings to attend, papers to sign, good-byes to be said.

At each turn, it seemed, the horror of it all came pound-ing back at them, like waves, one after another. John andBrenda could see things happening around them, feel eachnew 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 thatremained unsaid. And throughout the ordeal of that firstday, and that first week, of life without Claire, they kepttheir bearings. They seemed to know, instinctively, what hadto be done. Whether confronting the harsh realities of med-ical and legal procedure, or deciding how their little girl wasto be laid to rest, John and Brenda let themselves be guidedby their instincts. It was intuition, they would say, nothingmore and nothing less.

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Bill drove them to the hospital for their nine o'clock meet-ing. With the mandatory twelve-hour waiting perioddrawing to a close, Dr. Hollenberg confirmed officially thatClaire was brain-dead, which John and Brenda alreadyknew, and they talked again about organ and tissue dona-tions, which they'd already agreed to. They were expectingto hear_more about what had happened to their daughter —something, anything — but nothing further was said. Justlike the night before, the air was filled with tension, discom-fort, and long gaps of silence. "No one would look us in theface," John said. "They'd look at their feet, at the walls, upat the ceiling; they'd look left, look right, look at my beltbuckle. . . . I was trying to get their attention, and no onelooked me in the eyes."

An hour later they were joined by Linda, Rachel, andJesse. They went together to the icu to see Claire. Everyoneknew she was no longer with them, that a machine wasbreathing for her, but there she lay before them, as if asleep,looking perfectly normal. They said their good-byes even ifthey 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 transplantteam began their preparations. Neither of them had thestrength to go with her to the operating room. By mid-after-noon, they felt it was time to go. John remembers leavingClaire's room clutching a lock of her hair. He remembershearing the mechanical hiss of the vacuum hinges on the bigmetal doors as they began to slide shut behind them; then heremembers collapsing in the hallway.

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At 11:30 that evening, John got a telephone call from thetransplant nurse. She said that recipients had been found andthat they were waiting for the surgery teams. The organ har-vests were performed that night between midnight and twoo'clock. The final entry on the anesthetic record was "venti-lator off, lungs removed @ 2,:io." At about three o'clock,John heard a helicopter passing over the house; it must bethe surgeons, he thought, heading out with Claire's organs.

The autopsy was performed in Hamilton on the morning ofOctober i6th. Later that day John received a call from thelocal coroner, Dr. Richard Porter. It is required by law thatany information pertaining to an autopsy must be given tothe family of the deceased before any other individual orinstitution, but, as John explained, it is highly unusual forfamily members to be contacted by telephone. "He said,'Based on the results of the autopsy, we've issued an alert tothe hospital regarding the use of the iv solution.' And that'sall he'd get into. Well, when you're alerting people, some-thing's wrong. Obviously. The autopsy results are strictlyconfidential. It goes from the pathologist to the coroner, andthat's it. Before anybody sees anything, it goes to the family.And they're really, really strict. That's enshrined in the coro-ner's act. In this case, the alert went to us and the hospitalsimultaneously, because of the extenuating circumstances —extreme issues of care. And that sent my red flags up evenmore."

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The coroner's phone call only confirmed what Johnalready suspected — no, what he already knew — and it con-vinced him that the hospital knew it too. "They knew theykilled her. The coroner called on the i6th and told them. Like,whatever you guys did to this child, you better figure it outand not do it again." He also took the call as a clear signalthat he had to take action and that even now, in the midst ofpreparing to bury Claire, he couldn't delay. "I knew they'dkilled her and that there needed to be documentation. It wasjust intuitive to get this written down, to the best of myknowledge, write down my perceptions of what took placeat what time, who said what, who did what."

As John worked on this letter, he also started on Claire'seulogy, which he had insisted on writing. This was the latestof many responsibilities that he felt compelled to take uponhimself. Earlier that day, at the funeral home, John andBrenda were discussing arrangements for the service when heturned abruptly to the funeral director and told him that hewas going to dress Claire. "I said, Til be dressing her. Thisis 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 differentcultures; John remembered reading about a family in theUnited States whose five-year-old son had died. "Theydressed him, very lovingly, and with great respect. And theyspoke about . . . not closure, but a sense of connection, anda sense of duty. And to have strangers dressing Claire's

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naked body just. . . it bothered me. There was a sense of 'It'smy duty, as her father.' A profound sense of duty. . . ."

The idea had not come up at all until that moment, noteven with Brenda. At first, she was reluctant about partici-pating. "Just realize," John told her, "if you can't do it, it'sfine, I can do this." Brenda agreed, with great trepidation, toat least try.

When they told Linda and Bill what they were going todo, they asked if they could help. "Everybody was kind ofappalled by it," John said, "but I think they really saw some-thing in it, intuitively, you know? And going back to culturesthat deal with death so much better than us — they wash andanoint the body, they wrap a body, the father carries thebody. If it's buried, the father lays the body in the grave. Thewomen are involved with the anointing and the cleaning. Insome Indian cultures, a husband dies, and she helps build thefuneral pyre and lights it. There's just so much of that, theworld over."

The four of them went to the funeral home the next after-noon. John remembered the emptiness of the room. "Theyhad 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 col-

lapsed.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 get-

ting 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. Theyboth worked — John as an RN (prior to this, for many yearshe was a professional musician), Brenda as a library techni-cian — and their leisure time was centred primarily on theirhome and their children. They enjoyed socializing with friendsand family, but essentially they were private people. It came asa surprise, even a shock, therefore, to see such an overwhelm-ing response to Claire's death from so many people.

The first of three visitations took place at the funeralhome 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 theyentered the little room, each person was greeted by eitherJohn or Brenda or Jesse and invited to sign a guest book.Two walls were filled with photographs and picture boardsthat Jesse had put together. Much of the display was devotedto Claire's artwork — cats, ladybugs, butterflies, each ofthem in bright, bold, primary colours, looking playful andhappy. Jesse also took it upon herself to prepare a memorybook, which had more pictures and artwork, along withsamples of Claire's poetry and stories. The memory bookwas mounted on a table near the centre of the room, sur-rounded by cards and bouquets of flowers. The wall to theleft of the entrance was also lined with flowers, dozens ofarrangements that were set out on tables and along the flooron 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 madetheir way counterclockwise around the room toward Claire;there they were greeted by at least one family member. Someremained, offering comfort to the family; others left quietlyafter 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 havedied. Because people had the same expectation —- that shewas going to have the surgery, she'd be home for a fewweeks, she would be okay, and she would be back at school.They were totally shocked by it. And I think it was evenmore shocking for them to hear that it shouldn't have hap-pened. They just didn't know how to respond to that. Somepeople still don't."

Among the first groups to visit were Claire's grade fiveclassmates, from Ecole Norwood Park, a French immersionelementary school that Claire and her sister had bothattended since kindergarten. Students from other grades alsocame, including most of Jesse's friends, along with several ofthe teachers and administrators. It was perhaps hardest onthe young ones. They'd been told what had happened toClaire, they understood conceptually what death was, butthey were unprepared for what they were about to see withtheir own eyes. As they made their way inside, their mannerwas light, disaffected; they looked more curious than dis-traught. When they went out, they walked slowly, solemnly.Some were sullen, downcast; others looked frightened, con-fused. All of them were saddened and upset. All of them leftbehind at least a part of their innocence.

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John and Brenda were especially moved when many ofthe staff from the General Hospital came to pay theirrespects. On the other hand, their visit only made the stafffrom McMaster look all the more conspicuous in theirabsence. "Every nurse from the General showed up at thefuneral home," John said. "From the OR nurses to the post-recovery care nurses, the nurses who took Claire in when shefirst got there — every single one of them. Not one personfrom McMaster set foot in there. Not one surgeon, not oneattending, not one nurse, not one social worker, no one.Nothing. That speaks volumes to me."

On Thursday, October 18th, John finished his letter and sentit to the College of Nurses of Ontario, the agency responsi-ble for the certification and governance of the province's139,000 nurses. The letter constituted a formal complaintagainst the three icu nurses who were on duty during theweekend of Claire's death.

As a registered nurse and a member of the College, Johnunderstood the process that would be initiated. There wouldbe a review of Claire's case, followed by an internal discipli-nary hearing before a three-person panel. The consequencesranged from dismissal of the allegations to a suspension ofthe nurse's certification and, in extreme cases, criminalcharges. That, John thought, would come as it may. What-ever the procedures or their outcome, he was thinking onlyabout his immediate objective: He wanted to ensure that

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Claire's case would be investigated independently. Hewanted to send a message to the nurses so that they wouldsee that he was already looking for answers about their con-duct. He knew that the College would be notifying HamiltonHealth Sciences of his complaint, so he felt assured of gain-ing the attention of senior management. And in the end, healso wrote the letter for himself. "She died the 14*; I hadcomplaints into the College dated the i8th. I guess a smarterperson would have waited, but it just brought so much morevalidity, and I needed to do it. I needed to write 'You killedmy child.' I needed to say this."

The cremation was scheduled for nine o'clock on Fridaymorning at Bay view Cemetery, in nearby Burlington. Asmall group of immediate family members gathered at thecrematorium. After a brief prayer, John and Brenda walkedwith Claire to the entrance of the crematory. "We walkedher to the furnace door," John said, "and when they placedher into the furnace we walked her right to that point. Theguys there didn't know what to do or say. I didn't expectanything from them — they were just working there, justdoing their job, and we were doing our job. We walked herright to the back end of the catacombs, down the hallwaysand through all the hollowness and dirty industrial awful-ness of it all, all dressed up in suits and dresses. . . . This ispart of the job, and part of our duty, to see her off to theabsolute 'This is it. We can't do any more for her.' And I'm

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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 ithit me then, because even when her body was in the funeralhome — I don't know, it sounds weird, because I was thir-teen — but it was like she was still there. It was like it was aplay or something, that's what it felt like to me, like I wasjust dreaming, and I was going to wake up soon. And I real-ized once she got cremated that it wasn't, that it was real."

Bill and Linda Frid waited behind at the cemetery; they weregoing to bring Claire's ashes back to the church for thefuneral service. The Lewis family spent the rest of the morn-ing back at home. At one point, John went into the livingroom and sorted through the CDS, looking for SarahMcLachlan. They'd chosen her song "Angel," a favourite ofClaire's, to play at the service. "I have an image of her," Johnsaid. "She used to sit in the living room, in front of thespeakers, 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 GRIEVING 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 angelmay you find some comfort there

you're in the arms of the angelmay you find some comfort here

More than five hundred people attended the service. It washeld at the First Unitarian Church of Hamilton, under thedirection of Reverend Allison Barrett and her assistant, KeithJewell. Reverend Barrett agreed to deliver John's eulogy. Init, John celebrated Claire's life, her spirit, and, especially, herboundless generosity toward others:

One of many things Claire really excelled at was loving; loving

unashamedly, unselfishly, and uncompromisingly. Loving with reck-

less 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 andfriends but also by those who had not met Claire, "those in

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the world who would not benefit from her life to come." Yeteven through such a tragic loss as this, something can begained. He wrote about the organ transplants, how Clairewas to affect the lives of people neither she nor her parentseven knew. Even in death, as in life, John wrote, Claire wasable to share the most precious gift of all. The eulogy con-cluded with a poem that John had written for their dinnerparty the night before Claire went into the hospital.

Clocks tick, hearts beatTears fall

Holding my breath waiting . . .Waiting for the metamorphosis.

Chrysalis cracks, she emergesWings poised, ready for f l i g h t , . .

When it was all over, it was time to go back home. After allthe commotion, and the busyness of all the people aroundthem, 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 andBrenda sat outside the operating room, waiting to see Claireand to hear that she was all right. A day later they remainedat her bedside, talking, visiting, nurturing her. A day afterthat Claire was gone — there, but not there, with machinesbreathing for her. Confronted with the horrific loss of theirdaughter, John and Brenda were at once deluged with deci-sions, responsibilities, questions — all of them painful andheartbreaking, unexpected and unavoidable — all part ofwhat John calls "living the unimaginable." But they found away to carry on. What had to be done was done. In the midstof their tragedy, Claire's family found strength and certitude,not in spite of their grief but because of it. It was all forClaire, John told me — everything they did that week and allthey were about to do. It was all on Claire's behalf and in herhonour.

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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s an employee of the Ontario government, Brenda wasntitled to a maximum paid leave of absence of five

days. Technically, she was due back at her desk on Mondaymorning, one working day after Claire's funeral. Her super-visor told her at the funeral service not to worry about it, thatshe should take as much time as she needed, but she calledBrenda just over a week later to ask when she expected to becoming back. Perhaps working again would "help," hersupervisor suggested. "I told her I did not feel at all able toreturn to work so soon," Brenda explained. The only wayshe could remain off work was to use up her remaining vaca-tion time and accumulated sick leave. That, she and Johncalculated, would take her to the end of December.

John's situation was even less flexible: As a permanentpart-time employee, John was not eligible for any bereave-ment leave at all. Furthermore, after the shock and traumaof Claire's death, he was neither willing nor able to return tonursing, at least not to direct, bedside patient care. His

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family doctor provided documentation to this effect, afterwhich his employer, Hamilton Health Sciences, indicated thatit would try to place him elsewhere in the organization.Nothing came of this, and consequently he remained unem-ployed, working sporadically, for the next several months —but even if the hospital had found something to offer him, it'sunlikely that John would have, or could have, accepted it."Advocating for Claire," he said. "That was my one and onlyjob, I thought. There was nothing else I could have done."

In fact, John's advocacy was well under way. It had beenset in motion the day before Claire's funeral, when John hadsent his formal complaint to the College of Nurses ofOntario. In his letter to the College, he gave a detailedaccount of a series of incidents followed by a list of specificquestions. Concerning the events of Saturday morning, hewanted to know, if he and Brenda had not been there, howlong Claire might have continued to seize before she wasnoticed by the nurse. He wanted to know when — or if —calls went out to the attending physician or resident, alertingeither of them to the presenting behaviours —• petite-mals,decreased focal ability, decreased level of consciousness—-that preceded her seizure. At what point in the chart did thenurse note these signs and symptoms? And if there were nosuch notes, why not?

John's description of the events of Sunday evening wasmore detailed, and his questions were more pointed. Whendid the call go out to the resident regarding Claire's danger-ously low sodium level? When did the call go out to theresident regarding concerns over her decreased level of con-

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sciousness and periods of apnea? When did the nurse indi-cate in her notes the first occurrence of these symptoms? Wasthe child not still in a one-to-one nursing situation at thetime? Or did the nurse's assignment include other patients?If so, who was responsible for these assignments? Whodecided, "considering she was less than 48 hours post-op fol-lowing an 8-hour procedure for a brain tumour," that Clairewas suddenly not "critical" enough?

A week later, on October 2,6th, John wrote to Dr. RichardPorter, the local coroner who'd called him after Claire'sautopsy. "My intention of this brief report is two-fold. Mywife, daughter and I are deserving of answers as to why thisbeautiful child of ours is dead; I am willing to assist in anyway to that end. Secondly, if there were errors committed,human or systemic in nature, these need to be addressed toprevent a similar disaster occurring again in the future." Headvised the coroner of his submission to the College ofNurses of Ontario and briefly restated his summation of theevents of October 13* and 14*; even in this, John reiteratedthat his sole motivation was to seek out the truth, and thetone of the letter remained professional and courteous. "I havemany questions and concerns surrounding the last few hoursof Claire's life. Hopefully, some of these questions and con-cerns will be addressed during the course of your investigationand that of the CNO. If I can be of further assistance in anyway, please do not hesitate to contact me." Dr. Porter did notreply, nor was John expecting him to; his objective, primarily,was to have the letter on file with still another institution inde-pendent of the hospital. Mission accomplished: His summary

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of events and his "questions and concerns" about the circum-stances surrounding them would now be a matter of recordwith an agency of the Crown.

A week later, however, John decided to take his case astep further. He and Brencla drove to St. Catharines, aboutforty minutes southeast of Hamilton, to pay a visit to theregional coroner. They wanted his assurance that therewould in fact be an investigation and that they would bekept fully informed of any developments. The regional coro-ner, Dr. Richard Eden, looked nervous, uncomfortable.Throughout their brief conversation, John recalls, Dr. Edenremained steadfastly noncommittal. "The first thing out ofhis mouth was 'Well, I don't see any basis for human errorhere.' Well, what the hell is that? How would they knowthree weeks after she died? They haven't done an investiga-tion. They haven't done anything." Dr. Eden did confirmthat a coroner's investigation would be forthcoming; he alsotold them that Claire's case was going to be reviewed by aPediatric Death Review Committee. John took this asanother clear indication of the gravity of the situation: PDRCcases are assigned by the Chief Coroner's office, whichmeant that Claire's case had already reached the highest levelwithin the provincial judiciary system.

John and Brenda were pleased to see that the case wasbeing taken this seriously, but John also knew that the processwould likely be long and slow. In the meantime, he wouldpress ahead with his own investigation. Immediately follow-ing Claire's death, he had submitted a written request to thehospital for copies of Claire's medical record, the obvious and

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most important source of concrete, detailed information. Hereceived word in early November that the copies had beenprepared, and he went to the hospital to pick them up inperson. Expecting the chart to shed light on many unan-swered questions, John couldn't wait to get home to read it.He couldn't wait, in fact, to get back to his car. He stoppedin the hallway, knelt down to the floor, and started reading."It was unbound, it was just loose pages, and I had pagesspread out on the floor. People were stepping around me,looking at me like I'm insane."

The chart is a massive compilation — more than twohundred pages of records, flow charts, and handwrittenentries by the nurses and doctors — but almost instantlyJohn found what he was looking for. He went straight toClaire's chart for Sunday, October 14*, which itemized theevents and circumstances of her final hours. Moments laterhe had the first of many revelations: The decline in sodiumlevel was even more drastic than he'd suspected. From 138at noon hour, it had fallen catastrophically — and, evidently,unnoticed — to 124, less than seven hours later. "I looked atthat, and I went 'I knew it.'"

Hours later, back at his desk at home, John spent the restof the day and most of the evening reading through the doc-uments, and on the basis of that initial run-through he foundenough evidence to substantiate what he regarded as grossnegligence on the part of the physicians. His next letter, writ-ten just days later, was a formal complaint to the OntarioCollege of Physicians and Surgeons. Like his letter to theCollege of Nurses, this one drew from first-hand observations

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and his professional perspective, but it also made severalpointed references to Claire's chart, calling several of itsstatements into question.

John's first concern was centred on the efforts that weremade, reportedly, to save Claire as she began to crash: "Thedischarge summary gives one the impression that extraordi-nary measures were taken to preserve this child's life, whenin fact the interventions mentioned must have been carriedout post brain death. From my observations, as a registerednurse, very little was done as this child deteriorated beforemy eyes." This issue, also raised in his complaint against thenurses, pointed to a far more serious question: In all that time,from early afternoon through to early evening, where wereClaire's doctors? "No physician saw this child until at least1900, at which point the child was unresponsive, havinggone past the obvious stages of increased ICP: restlessness,lethargy, and decreasing responsiveness, all observed bymyself and reported by myself to the attending nurse. . . . [Inthe discharge summary, the attending physician] writes that'the patient developed rapidly decreased level of conscious-ness with decerebrate posturing and apnea as well as possibleseizure' without having laid eyes on this child until well aftershe crashed. I reported the signs and symptoms of animpending disaster to the attending nurse, who I assumepassed on this information to the responsible physician."

Finally, John addressed the overall lack of high-level mon-itoring and observation that would be consideredappropriate, if not fundamental, in the day-to-day opera-tions of a specialized pediatric intensive care unit: "Why was

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no action taken in an icu setting considering this child wasjust 48 hours post-op and in serious difficulty? Action earlierin the event might have taken place had there not been anattitude of what appeared to be complacency and what Iconsider, from a professional perspective, lack of concern forthis child's medical condition. How does a sodium level fallfrom 13 8 to 124 in a matter of hours and no one in a criti-cal area notices signs/symptoms of this event taking place? Ihave worked on an acute surgical floor, and I am aware ofhow quickly a patient's condition can change, and howquickly action needs to be taken to correct problems."

This letter, dated November nth, 2001, would trigger thefourth major initiative set in motion by John since Claire'sdeath, fewer than thirty days earlier: Claire's case would bereviewed by the College of Nurses of Ontario, by theregional coroner's office, through a Pediatric Death ReviewCommittee (by way of the Chief Coroner's office), and nowby the Ontario College of Physicians and Surgeons. And inthe meantime, John's own research, which would prove to bea pivotal factor in the outcomes of all of the aforementionedofficial investigations, had barely even started.

Claire's medical records confirmed much of what Johnknew, and what he suspected, but the chart also pointed towhat he did not know: He was convinced that the sharpdrop in Claire's sodium level was the single most importantfactor in her death, but he did not understand enough aboutwhat might have caused it to fall. Even as he drove homefrom the hospital, with Claire's chart at his side, stuffed intoa big envelope, his research plan was clearly established.

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The starting point was to determine any link betweenClaire's steadily plummeting sodium level and the drugsClaire was being given as part of her fluid regimen. John wasaware 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 dayClaire crashed she had been given a drug called DDAVP onthree occasions that afternoon — at one, three, and fiveo'clock — and then once again at eight.

DDAVP is an antidiuretic, used most commonly in thetreatment of diabetes insipidus. This condition, which isunrelated to diabetes mellitus (sugar diabetes), occurs whenthe pituitary gland is no longer able to produce enoughantidiuretic hormone (ADM). During neurosurgical proce-dures such as Claire's, the pituitary gland is often damagedor destroyed. One of the first symptoms of diabetes insipidusis excessive urination, and the standard treatment is toadminister DDAVP, which, serving as a replacement for thebody's ADH, will limit water output.

Claire's tumour was located directly adjacent to her pitu-itary gland. The possibility of diabetes insipidus had beenexplained 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 livewith diabetes insipidus the rest of their lives. Kids have thesetumours removed as teenagers and young kids, and they livepretty much normal lives."

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What, then, was the problem? John recalled that Clairehad been given DDAVP late on Friday night, just after she'dbeen transferred from the General, then again on Saturdayevening. Had it been prescribed to correct her fluid balance?Why, then, were there no notes to this effect? What were theorders? Who wrote them? And what happened on Sundayafternoon — 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 Lewisto give up his career as a musician (he was a professional gui-tarist for twenty-five years) and choose instead to pursuenursing. His new path led to new skills and talents, not onlyin nursing but as a medical researcher, that would be crucialto 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 Clairedied, but by this time he'd already established an impressivetrack record. He earned his nursing diploma in 2000 atHamilton's Mohawk College. During that time, he was alsoenrolled as a part-time student at McMaster University,where he worked toward a bachelor of science degree innursing. When John graduated from Mohawk, he'd madethe Dean's Honour List three years in a row and earned twonotable awards: the Gladys Irene Daniels Memorial Award("most compassionate nursing care in third year graduatingclass") and the Elizabeth Maus Award ("for excellent nurs-ing skills combined with application of theoreticalprinciples"). Shortly after leaving Mohawk, he worked at thehematology/oncology ward at Henderson General Hospital,another of the three major facilities of Hamilton HealthSciences. In 2,001, John returned to Mohawk College, thistime to become a part-time instructor, teaching first- andsecond-year nursing students. In the same year, at McMasterUniversity, he became one of only three university students inCanada 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 stu-dents, faculty, and academic researchers with an access codenumber) through various universities and medical institu-tions. Once he identified a research paper that lookedrelevant, he would order it through the library and take ithome. Occasionally he had to pay for them, but most papers

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were available free of charge. "It was textbooks, but mostlyit was on-line resources, especially journal articles. That's thebig one, because journal articles are A-i evidence. They'rethe best evidence you can get. They're the most recent, gen-erally, the most up to date,"

The process was straightforward, but by no meanssimple, and it wasn't something a layperson could do. "Notwithout the databases," John offers, "and not withoutknowing search terms and knowing what you're looking for.I mean, if you put 'diabetes insipidus' into a database enginelike Pub Med, that anybody can get into, you'd probably get22,5,000 links — and who could possibly go through that?Even two thousand papers. And within those, what are youlooking for? No, I think searching, particularly medicalsearching, is a specialized field. And having the databases,and having access to them, and on top of that access to alibrary that even carries such specialized journal articles.How many people could walk into a medical library likeMcMaster has, with something like five million titles (plusthere's another couple million electronically captured), andfind 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 whathe had in Claire's records. He assimilated new knowledge andprinciples, gained new insights and understanding. Despitethe growing volume and complexity of documents, computerfiles, and correspondence he was amassing, he remainedundaunted. He was driven by Claire. She kept him going. Itwas 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 fig-

ures — this is her, you know? So there were breaks, away from it.

The reminders of Claire's presence, and her absence, wereconstant and painful. Now there would be still more pain andmore anger. It came from what John was learning, beginningto see. "The more I learned, the angrier I got. And the sadderI got, when I realized how preventable this death was."

Excessive urination is usually the most obvious sign ofdiabetes insipidus, but it isn't the only symptom. In and ofitself, excessive urination doesn't necessarily indicate dia-betes insipidus. Rather, diabetes insipidus is diagnosed on thebasis of three interrelated factors: urine osmolality (its con-centration), urine output (measured quantity), and serumsodium (sodium level in the blood). "In diabetes insipidus,"John explained, "your kidneys can't concentrate urine, soyou pass voluminous amounts of really dilute watery urine.And as you do, you're losing water from your body, so, pro-portionately, 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 osmo-

lality 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 Clairewas releasing very high amounts of urine, but it also indi-cates that she was highly overloaded with fluids. Where wasall that fluid coming from? John's conclusion — and, in hisopinion, the most basic and logical one — was that shewould have received it during her surgery. "In any surgerywhere there's a general anesthetic, you're going to get fluids,for blood pressure support. When you're intubated, the anes-thetics really drop your blood pressure, so you're given awhole bunch of fluid, to keep the blood pressure up, keepyour kidneys working, while they're slicing and dicing. Andthere's blood loss, and you need to replace that, and youreplace it with fluid. Your body will make new blood, it's nobig deal at all"

Claire's operative records would indicate the exact fluidintake levels, and her post-op chart would have tracked herfluid balance on an hourly basis. But when John went to checkthe 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 fromthe Hamilton General to McMaster. John didn't have any ear-lier records because they simply hadn't been sent with her whenshe'd been transferred. John was stunned by the prospect ofsuch a blatant oversight and horrified by its implications.

It took two weeks for him to obtain copies from theGeneral and, once he had them, less than an hour to confirmhis 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 basicmonitoring practices, which would have alerted staff andprompted the necessary actions, simply did not happen. AsJohn returned to the McMaster chart, retracing Claire's flowcharts, watching the now obvious telltale signs of theimpending tragedy of Sunday evening, his heart sank.

Her sodium was fine. She was peeing a lot, but they didn't meas-

ure 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, andtoo astonishingly preposterous to be true: At a time whenClaire was still heavily overloaded with fluids, she was givena drug that prevented their release. The correct diagnosis wasnot diabetes insipidus but rather "syndrome of inappropriateantidiuretic hormone" (SIADH). The appropriate treatmentwould have been a diuretic, such as Mannitol, which wouldhave helped flush out the excess fluid. Instead, the DDAVPretained it. All through the day, as her iv solution continued— one part saline, two parts free water — her fluid levelslowly rose. All through the day, her sodium concentrationfell: from 138 at noon to 124 at six o'clock. At nine, it fellto 120; she was given Mannitol, but it was already too late.Claire was unconscious. She had succumbed to hypona-traemia, the result of her low sodium, which was in turncaused by her fluid overload. Post-operatively, because of theperi-operative fluids, it is common to see a patient's handsand feet badly swollen, like Claire's were. But this was a neu-rosurgery, in a young child, and the risks and consequenceswere far different, far graver. The excess fluids built up notonly in Claire's fingers and toes but in her brain cells, andwhen these cells began to swell there was nowhere for themto move but downward, toward her brainstem. The bloodsupply to her brain was choked off. Soon it could no longercontrol any of her bodily functions, including breathing, andeven though Claire was resuscitated, and breathing againthrough a ventilator, her brain was no longer working. It hadbeen asphyxiated, drowned, and it couldn't be brought backto life.

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John discovered more errors. As he continued to analyzeeach detail of the medical records, he seemed to find some-thing new at each turn. It all began to look like a steadydownward spiral that began not on Sunday afternoon butalmost from the moment Claire left the General two nightsearlier. Just after her arrival at McMaster, she was given fivemicrograms of DDAVP — far too high a dosage, particularlyso soon after surgery, and especially so for a young child.From that point on, all through the night and into the morn-ing, Claire's sodium dropped steadily, from 138 just aftermidnight to 129 by n a.m., when Claire suffered a seizure.The sequence of events on Saturday was almost identical towhat happened on Sunday: She was given the wrong treat-ment, based on an incorrect diagnosis; the increasinglyalarming symptoms — her blood, her urine, her behaviour— went unnoticed. "They almost killed her on Saturday anddidn't even realize it," John lamented. "It was a dressrehearsal for Sunday. They turned around the next day anddid the same thing, and absolutely no one saw it."

John found still another incident involving DDAVP, onethat, ironically, was an appropriate call. On Saturdayevening, Claire was releasing excessive amounts of urine; thistime her urine osmolality fell, and her sodium rose sharply."They gave her two micrograms, and it was completelyappropriate, because her urine output was eight, nine hun-dred c.c.s an hour, urine osrnolality was seventy, well below ahundred, which is total evidence for diabetes insipidus. Andyou want to get on it quickly, so the serum sodium doesn't gothrough 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, andshe did a great job, actually, the resident for Saturday."

Claire's fluid balance was restored within hours, andmight well have remained intact, but then on Sunday morn-ing there were more oversights and more errors. Beforeleaving, the resident cancelled the DDAVP order and, evi-dently (based on what John saw in the chart), did not writea 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 chartat 10:30. 'If urine output greater than 160 c.c.s an hour fortwo hours, give DDAVP, two micrograms iv.' What he meantwas one dose^ but he didn't notate that." The downwardspiral was again in motion: At the same time the DDAVP wascontinued, the monitoring of Claire's blood work wasreduced from four hours to every six. "That's now every sixhours they're going to look at her blood. Had it been fourhours, she'd be alive. Had they done it at four o'clock in theafternoon, they would have seen her sodium in her boots andstopped this crap, stopped the fluid replacement, got someMannitol in her, and she would have been fine."

John had to turn away from the appalling facts and fig-ures that screamed out at him. Their message was so clearand so horrific that he couldn't bear to see them. But hecouldn't stop now. He decided to step back from Claire'scase. Perhaps he would gain something from other examples,from another vantage point, a different perspective. Helooked for case studies, historical precedents; he took in more

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facts and figures. None of these gave him solace either. It onlymade Claire's case, the care and treatment that Claire hadreceived, look worse. One study John found, a ten-year ret-rospective on craniopharyngiomas performed at Toronto'sHospital 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 inci-

sions, 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 micro-

scopes. 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' hypona-

traemia, 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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\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 slaugh-

tered 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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cfcajfofoz- 4

he more I heard about what had happened, what Johnhad discovered through his research, the more I won-

dered how this family had survived. Many don't. Familiesbreak down, careers are ruined, people's health — people'slives — are destroyed. "How did you guys do it, John?" Iasked.

He took a deep breath and let out a long, slow sigh; it wasa gesture that I had seen many times over the course of ourtalks. He would shake his head, sometimes with a sardoniclittle laugh, and then he would sigh. "I don't know how any-body gets through it," he answered quietly. "I haven't got aclue. I've talked to other parents, and I don't know how theydo it. But I know it was — and still is some days — an every-second-per-day obsession with this kid's death. It was 86,400seconds 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

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

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:-> v^K >?M r->f;f ,f

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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 We'd just drive

and drive. And then we'd go back home and pick Jesse up from

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 per-

cent 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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. THROUGH A LONG DARK SILENCE

It became John's routine, his daily ritual, a way to keepgoing when there seemed to be no reason to believe theycould endure. Neither John nor Brenda slept more than threehours at a time, despite their medication, despite the strainsof just getting through another day. During the long, sleep-less nights, John spent most of his time at the computer,doing his web searches, studying, reading. And when hecouldn't read anymore, he would write. He would open anew page and just ramble on, letting his thoughts take himwhere they may. It got to be a habit. It got to be cathartic. Ithelped him confront his demons — pain, anger, grief, guilt,hopelessness, heartbreak. It helped him survive the worstweeks 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, pick-

ing 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 play-

ground 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 involv-

ing 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 disre-

spect 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 some-

times 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 par-

ents (particularly fathers) believe we are the protectors of our

children. We keep them safe, we guide them, advise them, disci-

pline 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-year-

old 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, ded-

icating 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 personal-

ity, 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 search-ing through a succession of web sites that dealt with organdonations/Most of them were designed to encourage peopleto participate, to register as organ and tissue donors. Many

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of the sites featured testimonials from recipients or, in thecase of young children, their families. Their stories cited thedetails of how a vital function had been restored orimproved, or indeed how a life had been saved, as a result ofa donation. John was touched by the stories, and by the pic-tures that accompanied them, but it struck him thatsomething was missing. The stories were all from the recipi-ent's point of view; none of them talked about the other sideof the coin, the donor's perspective. But, just as important,what about the donor's family? In many cases, they are theones who must make the decision and sign the consentforms. The picture being painted, therefore, was not com-plete. He wanted to do something to correct this imbalance.He decided this might be a good time, and a good way, toshare something of Claire's story.

John put together some material, attached it to an e-mailentitled "Organ Donation," and sent it off to the HamiltonSpectator, addressed to publisher Jagoda Pike and editor-in-chief Dana Robbins. "This information," John wrote, "maylend some insight as to how this event has unfolded for ourfamily and also how it has benefited others. Knowing ourchild's heart beats in another individual and her lungsbreathe in another individual's chest has given us a smallmeasure of comfort with this devastating event in our lives.By letting people know about Claire's donations, we felt wecould help raise awareness of the importance of organ dona-tion and at the same time honour her memory and life. Astragic as the death of a child is, Claire gave the gift of life toso many. And for this she should be honoured."

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John got a response from the newspaper almost immedi-ately, and a month later the Spectator ran a major featurebased on the material he'd submitted. It began with a hugecolour picture of Claire on the front page. It was discussedon page 2 in a lengthy editorial by Dana Robbins. And in thepaper's weekend section, The Magazine, there was a fullpage devoted to Claire's story.

As Dana Robbins explained in his editorial ("OneFamily's Extraordinary Gift"), he didn't open John's e-mailright away: It "sat unread on my e-mail list, along with the150 or so other untouched messages that had accumulatedthere." But Jagoda Pike did read it, and she asked him aboutit the next morning. Robbins opened John's e-mail, thenspent the next twenty minutes reading Claire's story, "cap-tured so wonderfully, and achingly, in her father'sremarkable eulogy. John is a registered nurse, but he has apoet's appreciation of the language; he writes with a passionundiluted by sentimentality.

"Afterwards, I called John at his home. I wanted to per-sonally acknowledge his letter, and to offer the newspaper'scondolences to his family. But I also, deep down, wanted tosatisfy my own curiosity about John. I was struggling tounderstand how a family that had so recently been dealt theultimate devastation, could already be thinking of how thatdevastation might help others. John and I chatted for aboutfive minutes, so I make no pretence of any great understand-ing or insight into the man. But in those few minutes, onething became evident: John and Brenda and Jesse are justwhat 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. AsRobbins wrote of the eulogy, John "mostly talked aboutClaire and her inspiring, but heartbreakingly short life.Finally, he relates a very special conversation that occurredbetween 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 inti-

macy 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, leav-

ing 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 some-

thing 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 med-

ical 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 oth-

erwise 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 intu-

itive 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 letterthat the family had received from Organ Donation Ontario,and this too was featured in the story. Its language was lessmoving than John's eulogy, but its message was no less com-pelling:

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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 suc-

cessful 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 seriesof photographs of Claire alone and with her friends andfamily. In the last column, there was a poem written byClaire's sister, who at the time was thirteen years old.

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I DreamedBy Jesse Lewis

I dreamedClaire

At the parkPlayed and laughed

Beautiful

I dreamedClaire

In heaven,Sleeping peacefully on a cloud,

Exquisite

I dreamedClaire

Gone from my lifeShattered 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. Aweek 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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THROUGH A LOMG DARK SILENCE

There were others: one from the mother of a fourteen-year-old boy whose lung transplant had saved his life;another from a mother who'd also lost an eleven-year-olddaughter; another from the grandparents of a four-year-oldgirl who will eventually need a heart transplant if she is tosurvive.

The Lewis family was deeply moved to see that Claire'sstory had touched such an emotional chord in so manypeople. But the response that had the greatest impact onJohn and Brenda was not in a letter; it came in a phone call.It was neither gratifying nor supportive, it was simply longoverdue: It came on Monday morning, the 14*, two daysafter the newspaper story was published. John answered thephone and found himself speaking with Hamilton HealthScience's Director of Critical Care. This was the Lewisfamily's first direct contact from the hospital since Claire'sdeath, three months earlier to the day.

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r. Peter Kraus, Hamilton Health Science's Director ofCritical Care, was calling John to arrange a meeting

between the family and the hospital representatives. He wasnew to the hospital, and to Claire's case, and John's mannercaught him off guard; he might have expected John's recep-tion to be cool but not blatantly hostile. John was not at allhappy to see that the hospital was finally calling. He wasangry that it had taken so long and more than a little suspi-cious of the timing: Had the Hamilton Spectator story notappeared two days earlier, would this call have even takenplace?

"You're a little late, aren't you?" John answered tersely."Why are you calling me now? Are you going to assumeresponsibility 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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"Yeah, I'm sure you do know. Are you here to talk aboutresponsibility? Are you going to talk about the nursing? Areyou going to talk about physicians not showing up? Are yougoing 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 discussour 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'saccountability, put me down for a meeting. If not, it's a wasteof time."

So ended the conversation, as did several subsequentattempts by Dr. Kraus to get John and Brenda to come to thehospital. John balked at the notion of "partnering" withHHSC, while Dr. Kraus continued to deflect the question ofaccountability. Over the next two weeks, the volleying con-tinued, until John decided that a change was in order:instead of "if" such a meeting would take place, he wantedDr. Kraus to clarify who exactly would be there.

"It will be you and Dr. Hollenberg," John insisted. "Wedo not want to meet with the attending; we do not want tomeet with any nursing staff or anyone else connected to thathospital."

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A LIME IN THE SAND

More discussions ensued, but John remained steadfast."I've been to family meetings, I know what they do," heexplained to me. "They line up a wall of people, a wall ofwhite coats, just to intimidate the family."

Eventually, Dr. Kraus conceded, but John wasn't quiteready to make an appointment. Instead, he turned to a newissue. He knew that immediately after Claire's death HHSCwould have been required by law to conduct a review, called aSentinel Event Peer Review. He wanted a copy of the minutesof the committee's meeting. Dr. Kraus declined his request.

"Then what's the point of meeting?" John asked. "You'renot being up front with me, you're not being honest withme."

"It's an internal document, it's confidential," Dr. Krausanswered.

"Confidential? If we're having a meeting to talk aboutClaire's death, that document becomes real important."

"We could share it with you at the meeting," the doctorsuggested.

"No, no, no. I need it ahead of time, to see what you'vecome 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 rep-resentatives.

"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 para-graphs outlining the purpose of the meeting and describingthe review process itself. This preamble was followed bythree sections.

The "Case History" comprised a single paragraph, begin-ning with Claire's initial consultation with a pediatricneurologist in August and ending with the details of theorgan retrieval on October 15*. Within this one-paragraphsection, which totalled twenty-one lines, the description ofthe events that occurred during the final conscious hours ofClaire's life took up only two sentences.

The next section, "Matters Discussed," provided a point-form list of seven "matters" but offered no elaboration at allon what had been "discussed." Its one-sentence conclusionacknowledged simply that the management of sodium andwater homeostasis in the post-op phase of this type of pro-cedure "can be complicated" and that "this patientpresented some significant challenges."

The final section, "Recommendations," offered anotherlist, six actions to be undertaken in response to the review,including, as its final point, "A meeting with the familyshould be arranged."

The report itself was undated, but it referred within theintroductory text to the date of the peer meeting itself,November 19*, 2001. It ended as it began, with a singleword written in boldface capitals: CONFIDENTIAL.

John couldn't believe what he was reading. He wasenraged by its brevity and especially its lack of substance, itsinconclusiveness. The next day, when Dr. Kraus followed up

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A LIME IN THE SAND

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 thehell 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 recommen-dations 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 hos-pital's intentions. Ultimately, however, he and Brenda agreedto attend a meeting. They had nothing to lose, and despite allindications to the contrary, they both hoped that, in a face-to-face situation, some answers might be forthcoming. Onthe other hand, John braced himself, preparing not for thebest possible outcome but the worst. His demeanour wouldbe no less adversarial, his attitude no less hostile.

Bill Frid, John's brother-in-law, agreed to accompanyJohn and Brenda, not only to lend his moral support, butalso to provide a more objective assessment of the discus-sion. It would be important, they all agreed, to have athird-party perspective, someone sitting on their side of thetable 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 hearthe things that perhaps John and Brenda couldn't hear."Prior to the meeting, the three of them also discussed theirgame plan. "We talked about it ahead of time — This iswhat 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 andnot blow a fuse. I remember saying to him, 'Look, whatthey'll look for is being able to write you off as an irrationalparent, so don't give them the ammunition."

The meeting seemed destined to go off the rails before it evenstarted. Instead of two hospital representatives, as agreedupon, there were six. Bill wasn't surprised to see such acrowd. "They do that," he said. "They bring in the cavalry,they circle the wagons. I knew it would be like that, that theywould bring in as many people as they could to sit aroundthat table, for an intimidation factor. They'd never admit tothat, but hospitals close ranks pretty quick."

To make matters worse, one of the uninvited participantswas Claire's attending physician. "I couldn't prevent themfrom coming," Dr. Kraus told John apologetically. WhenBrenda saw him, she almo>st fainted. There he was, directlyacross the table from John, sitting stiffly in his chair, his armscrossed high over his chest.

John attributed his presence to simple "physician arro-gance." "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 itdidn't occur to him." John was as shocked and displeased asBrenda, but he was determined not to let anything, or anyone,distract him from his mission. "We should have walked outthen, perhaps," John told me, "but in the end I think I justknew I was so right that I had nothing to lose by them being

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A L I N E IN THE SAND

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 taperecorder 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 manage-

ment person off," John explained, "to check on it, to call thelawyers, I guess, someone in downtown Toronto, and say,'Well, this guy wants to tape it. What should we do?'" Twentyminutes later they got permission to record the meeting.

Dr. Kraus proceeded to introduce his colleagues: Claire'ssurgeon; her attending physican; another critical care physi-cian, Dr. Charles Malcolmson; Nancy Fram, Director ofCritical Care Nursing; and Linda Daniels, HHSC'S Director ofPatient Services. On this last introduction, John interruptedDr. Kraus again: "He said Linda Daniels in Patient Services,and I said, 'Excuse me, it's Risk Management, not PatientServices. Don't confuse Patient Services with RiskManagement. Let's be really clear about who's here. This isinternal. This is for you. Not me or Claire or her mother. NotPatient Services — Risk Management. Big difference.' So hesaid, 'Yes, Risk Management.' 'Yeah,' I said. 'Thank you.'"John glanced over at Linda Daniels to see if she might chal-lenge 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 bereal clear about who we're talking about." He reached intohis bag, took out a framed photograph of Claire, and placedit on the table facing the group. Then he sat back, glancingat 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 anevent, a sentinel event, an adverse event, all sorts ofacronyms and euphemisms — everything but what it reallyis, 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, hequickly realized that Dr. Kraus had nothing new to offerthem. Instead, he proceeded to read aloud from the SentinelEvent Peer Review, the same document that had so incensedJohn. "He just went down the page, almost verbatim. Thatwas the script. This was, 'Well, this is our story, we're stick-ing to it,' basically. With the ultimate goal of 'She died ofcomplications.' That was it. For which they have no respon-sibility, no accountability; they have nothing to do with it.This was just a complication of surgery."

John sat quietly, listening intently, stunned to think thatthe hospital would attempt, so brazenly, to whitewash theincident. Dr. Kraus made a reference to diabetes insipidus,then to an obscure condition called cerebral salt wasting. "Isaid, '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/ Whichkind of shocked them. That got their attention, when I couldspeak to this syndrome of cerebral salt wasting. It's a kind ofrare condition — no one's sure if it even exists. I startedciting papers to that effect, and it shut them up and stoppedthat pathway. And that was the research that came into play.The research allowed me to speak at their level, too, insteadof 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 every-one else — talking over him, talking to each other, to Johnand Brenda. Even as one of them challenged John on somepoint or other, someone else would seek his cooperation."We thought you'd want to help us," said one of the execu-tives. "If not," said another one, "other children might die inthat icu."

John wasn't buying any of it; it was too blatant to betaken seriously. "The Director of Critical Care Nursing saidto me, 'You have experience and insight that would beinvaluable, and with your input we could really make a dif-ference 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 toyou about your icu. Other than that, I've got nothing to sayto you. It's your icu, it's your problem, not mine.'"

The meeting seemed hopelessly out of control. Dr. Krauspressed on valiantly, holding to his script, watching nerv-ously from the corner of his eye as the storm around himgathered momentum.

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"It got out of hand," John said, "because I think peoplewere feeling the heat. The attending, the chief of nursing, riskmanagement. I think everybody was feeling a little bit ...cornered, I guess, would be the word. And that's where theDirector of Critical Care lost control, at that point. It wasreal clear — when people start talking a lot and defendingtheir positions or trying to dump it in our lap — that's whenthings got out of control. Which left it wide open for me tostep into it."

But John didn't step into the fray quite yet. It would takeanother push, another blow, one more vicious than any beforeit. It came on the heels of Peter Kraus's concluding remarks."He finishes his spiel," John told me, "and then the attendingphysician starts with, 'Well, Mr. Lewis, you and your wifegave her the fluids — and that went into her brain.'" For aninstant, the whole room fell silent. "The attending is sittingacross from me," John said, "and what does he open up with?'Mr. Lewis, you gave her the juice to drink at lunchtime. Thatfluid 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, pas-

sive 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 anes-

thesiologist, 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'trealized exactly where it was, or even what it meant, untilsomeone 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 physi-

cians, 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 eleveno'clock in the morning she put out over a thousand c.c.s ofurine in an hour?' He says no. And the surgeon sitting besidehim went, 'Jesus, what were you Jomg?'" Had the attendingknown that Claire's urine output was that high, surely hewould have realized that she was flushing out her peri-oper-ative fluids. The DDAVP order would have ceasedimmediately. The crisis could have been averted right thereand then. "He completely missed it. And I know he missedit, or he would have done something about it. He did noth-ing 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 fol-

lowing 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 theattack. Now he spoke to Nancy Fram, Director of CriticalCare Nursing. "Did you know a nurse had Claire for fourhours of a shift and walked off a shift without so much aswriting a narrative note about her? Wrote nothing andwalked 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 occa-sions? 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?" heasked Nancy Fram. "Before you answer, you'd better have agood answer, because the College of Nurses and the coroners— everyone's going to want to know the last time you docu-mented 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 havea look at them really quick, because I'll bet you haven't doneone in three years. With the shape of that icu. . . ."

John turned to address the room. "Complication, myass," 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 hermisplaced records, then to Saturday morning and her near-fatal seizure — the "dress rehearsal" for her death — and,finally, to her hour-by-hour deterioration on Sunday after-noon — 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 crit-

ical 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 assess-

ment 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 questiona single point. Neither did anyone else at the table. Everyoneremained silent, except for the surgeon. Dr. Hollenberg'sgasps and muffled groans could be heard throughout John'sgritty 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 happenedto Claire, don't you?' I said, 'I'm pretty sure I just establishedthat, that I know.' He started apologizing, and he got cut off,he got drawn up, sharply, by the people there. They knewexactly what they had done. And this is what astounded me.They went into this meeting thinking they could just sandbagus and walk away."

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Part of John still couldn't believe what his eyes and earswere telling him. It was hard enough to imagine they wouldact this way with anyone, but with him? With his knowl-edge? His unequivocal grasp of what had happened? "I wasa registered nurse, I was an employee of the hospital, I wasthere when she died. . . . I was actually that naive to thinkthey have a really good opportunity — basically, on thephone, I told Kraus, prior to this meeting, 'You guys have agreat opportunity here.' I was naive enough, and hopefulenough, 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 morething to say to the still-silent group before him. He leanedforward, half-grinning, half-scowling at them. "C'mon,guys," he said, "I work here. I've been on that side of thetable, and now I'm over here." Now he was glaring into theirfaces, one after the other. "I know what you're doing. Youknow I know. You're not going to get away with this." Nowhe was tapping his finger on the boardroom table. "You'renot walking away from this one."

When John finished, Brenda stood up and headed for thedoor, without looking back, without having uttered a word.Bill had hardly gotten a word in either, but he couldn't leavewithout speaking his mind. "I'm embarrassed to haveworked here," he told them. "And if I worked here now, Iwould resign on the spot. This is the worst display of pro-fessional conduct I've ever seen."

As John made his way toward the door, a couple ofpeople 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? Forwhat? . . . 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 sheis not as thick-skinned. Moreover, she was taken completelyoff 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 haveextended some measure of sympathy for their loss — a word,a gesture. Instead, she was subjected to one of the crudestexperiences of her life. She'd never participated in such ameeting as this one. For that matter, John told me, neitherhad he.

It was just one of the most horrible, brutal things that I ever wit-

nessed 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 leaving the hospital, John was back atvhis computer. He knew instinctively, just as he hadright after Claire died, that he had to get his thoughts downon paper. He needed to voice his response — his retaliation— to the events and remarks of that dreadful afternoon. Hedrafted a letter, working on it all that evening and into thenext day. When it was finished, he addressed it to MurrayMartin, President and Chief Executive Officer of HamiltonHealth 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,

cfoarfidefr (T

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1990, no known allergies. Presented with visual disturbances and

headaches near end of August 2001. Diagnosis of craniopharyn-

gioma; 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 investi-

gating 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 pro-

cedures/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 misman-

agement 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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LETTERS ARE EXCHANGED

nurse, would be complaining to the College of Nurses; she obvi-

ously 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 answer-

ing 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, dev-

astated 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 perform-

ance 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 pur-

pose 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 hap-

pened to Claire. She tried to put us in a position of feeling

obligated to assist HHSC in its attempts to rectify their own inter-

nal 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 investiga-

tion 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 dig-

nity, 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 fam-

ilies 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 theevening of Thursday, February 2,8th. John also e-mailed fif-teen copies — to each of the seven hospital representativeswho had attended the meeting; the local and regional coro-ners; Dr. Reddy, who'd assisted Dr. Hollenberg in thesurgery; Bill Frid; and four more of the hospital's top-rank-ing executives. His first response came early Friday morning.Mr. Martin wrote to assure John and Brenda that he wouldlook into the matter immediately.

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Over the next several days, John received a steady streamof e-mails, each one urging him to come to a meeting. Themost pressing of these came from Dr. Andrew McCallum,Chief of Staff, and Margaret Keatings, Vice President,Professional Affairs and Chief Nursing Officer. Mr. Martinwas launching a full-scale review of Claire's case, under theirdirection.

John denied all requests, explaining only that he had saida great deal already but had yet to hear or see anything fromthis institution that was of real substance. "I can't imagine ameeting would serve any purpose," he told MargaretKeatings in an e-mail. "I can't put myself or my wife in thesituation we found ourselves in previously with HHSC. Theemotional stakes/consequences for us are too high to trudgedown that road again."

Three weeks later Margaret e-mailed John. The review ofClaire'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 untilhe saw the review. "We are happy to share our review withyou," Margaret replied, "but had hoped to expand on thisreview and the actions we intend to take in response to ourfindings. We also wanted to apologize in person."

Referring to John's acerbic comment on the timing of thehospital's initial response to the family (after the Spectatorstory came out), Margaret added, "Honestly, though, John, thestory was not what initiated the involvement of Andy[McCallum] and myself. We became involved when we becameaware 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 con-

tact 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 col-

league 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 dig-

nity. 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 learn-

ing 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 appreci-

ate 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 hap-

pened 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 13-

year-old daughter and feel her legs turn to water as I whisper to

her, her sister Claire is dead. Does HHSC respond with any com-

passion, 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 inter-

est 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 pur-

poses. 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 legalcounsel. They had spoken to attorneys previously, but theresults of those meetings were less than encouraging. "I hadone lawyer say they needed twenty thousand dollars upfront, as a retainer, for expenses, to begin this lawsuit. Andhe 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 liquidassets. 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, goodluck finding a lawyer.'"

Bill Frid told them that a friend of his had recommendeda lawyer named Paul Harte, who'd been doing some probono work for the Trillium Foundation, a nonprofitOntario-based agency that operates a range of counsellingservices and recreational programs for ill and bereaved chil-dren. John called him, and they discussed the possibility of a

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civil lawsuit over the telephone. Like the other lawyers, Paulimmediately dispelled any notion John might have had aboutpotential financial gains. "I would have told John, right outof the blocks, your case isn't worth anything," he told me. Infact, Paul went on to explain why, in cases involving thedeath of a child, he spends an inordinate amount of timetrying 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 noguarantees that any damages awarded will be sufficient tocover legal fees and expenses. For this reason, it can be diffi-cult to find a lawyer willing to take the case without gettingpaid up front. The other problem families encounter is thatthere are very few law firms in Canada that specialize in thehighly complex area of medical malpractice. As Paulexplained, "Lawyers who don't have significant experiencewith medical malpractice tend to take a traditionalapproach, which tends to be ineffective. And there's lots ofpeople who have good lawsuits that are mishandled — by

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lawyers who are competent but who aren't qualified in med-ical malpractice."

Unlike the other lawyers John and Brenda spoke to, Pauldid not ask John for a hefty retainer fee; in fact, he explainedthat his law firm, which works exclusively in medical mal-practice cases, takes a unique approach to what he calls caseswith "compelling circumstances" and, in particular, to thoseinvolving the loss of children. First of all, the firm wouldwork solely on speculation — getting paid only if, and onlywhen, the lawsuit was won. Equally important, the firmitself would also cover the costs incurred in developing thecase — for example, in acquiring the opinion or analysis ofoutside experts; in complex cases,'these costs alone can runinto the tens of thousands of dollars.

All modesty aside, Paul explained to me with typicalbluntness that he would also have told John that his higher-paying cases help "subsidize" the unprofitable ones. "We doit because our other cases give us the opportunity to pursuesome of these other cases which are important for other rea-sons. And, frankly, it's a circle of goodness. I tell my clientwhen they come in, 'You're going to pay me more than you'regoing to pay any other lawyer, on your case that's worth twomillion dollars, but understand that when you're doing thatyou're paying not only for your case but for the cases I takeon where the damages aren't economically justified.'"

It was clear to Paul that financial gain was the least ofJohn and Brenda's concerns. In fact, most of that first tele-phone conversation focused on issues other than the civillawsuit — the College hearings, the coroner's inquest, and, in

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the broadest terms, how each of these procedures would helpthem achieve their real priorities. It was an ambitious under-taking, against formidable odds, but at the same time, to usePaul's phrase, "undeniably compelling." He asked John tosend him a copy of Claire's medical records and any otherrelevant information, and he agreed to meet with the Lewisesafter reviewing the files. John was in the midst of organizinghis material to send to Paul when he received the letter thatchanged everything.

On April 24*, nine days after Claire's twelfth birthday, apackage from Hamilton Health Sciences arrived by courier.It contained a letter, signed by Murray Martin, and a copy ofthe institution's review of Claire's case.

The package happened to arrive on one of the two dayseach week that Brenda was working at home instead of ather office in Toronto; John was home too. He opened thpackage, and the two of them, standing at the kitchencounter, 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 recommenda-

tion 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 fur-

ther 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 errorshad been committed in Claire's treatment: "We understandthat the presumed cause of her death was compression of thebrainstem due to cerebral edema. The cerebral edema mayhave been multi-factorial, but the condition was significantlyexacerbated by fluid and electrolyte management in the post-operative period." It went further, not only identifying the key

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issues but setting out the steps to be taken to prevent themfrom recurring: "Where an issue is identified, there will be asection which details action(s) to be taken." Seven keypoints, each followed by an action plan, were addressed inthe review:

(1) Failure of staff to transfer Claire's records when shewas moved from Hamilton General to McMaster's pediatricintensive care unit [PICU]: "Her peri-operative record did nottravel with her, and this resulted in the PICU staff not beingaware of the volume and type of fluid given intra-operativelyand 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

Included in these standards will be the expectation of the team to

review the peri-operative record to ensure a complete under-

standing 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'sdeterioration on Sunday, October 14*: ". . . She complainedof headache, which may have been another sign of worsen-ing intracranial hypertension. During this time her fluidbalance was positive and she was principally treated withhypotonic fluids. The effect was to give mostly free waterwhich 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 thecourse of the day even though her sodium remained normal,a fact that was unfortunately not noted by the attendingintensivist on his rounds. Claire's serum electrolytes weremeasured twice during this day, as the frequency of testinghad been decreased from every four hours to every six hoursduring the morning rounds. The last measurement occurredjust before she deteriorated, and there are differing accountsregarding when these results were known. An audit reportfrom the laboratory indicates the blood specimen was calledto the unit at 1855 hrs. Urine electrolytes were not includedin that last set of electrolytes. The team involved did notappreciate that, in fact, she was diuresing at least partly dueto fluid overload. The correct approach would have been torestrict fluid, and to measure urine and serum osmolality andelectrolytes 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

ative management of neurosurgical and other complex cases in

the PICU. In fact, there have been two cases of craniopharyn-

gioma 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 sim-

ilar cases.

(3) Errors in care and treatment based on incorrect and/orinappropriate information, and improper communicationbetween staff members: "The orders written by theendocrine service underwent a series of unplanned revisionsas a consequence of copying thereof. In addition, the staffendocrinologist gave instructions over the telephone forongoing management of the presumed diabetes insipidus.Despite the fact that DDAVP was given repeatedly, concerndid not arise within the team. We believe this was due to alack of knowledge on the part of the caregivers regardingdiabetes insipidus as opposed to fluid overload."

Action: It will be reinforced with staff to be word-perfect in tran-

scribing 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 symp-toms or to her parents' attempts to elicit action: "The severityof 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 andher pupils became more sluggish. Claire's father, who is anurse, had recognized that there was something wrong. Hemade his concerns known to the staff. The nurse also noted achange in Claire's condition, and notified the resident. The res-ident 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 deterio-

ration. 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 high-

light 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 atragic outcome: "Once Claire became obtunded, it was clearthat she had suffered a major event. The possible causes mostprobably related to increased intracranial pressure either dueto edema or bleeding. In either case, the institution of meas-ures such as Mannitol and brief hyperventilation would havebeen appropriate at the earliest time possible. When the staffintensivist was made aware of the deterioration, he judgedthat it would not be beneficial to administer Mannitol,because Claire was already severely poly-uric [urinating pro-fusely]. 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 earlierintervention, even at 1800 hrs or 1900 hrs could haveresulted in a different outcome for Claire."

Action: See above regarding guidelines, briefing and education.

Particular emphasis is being placed on the emergency manage-

ment of the deteriorating neurological patient.

(6) Inconsistency of documentation and staff communica-tion records: "It was not clear what decision-making processand critical actions were taken by the team at particularpoints in time, and responses to interventions were notalways and not completely documented. Furthermore, thereare differing recollections by key members of the team as towhat conversations and between whom these conversationstook place regarding specific actions and orders for care."

Action: We are reviewing our documentation system at the hos-

pital. We also are exploring the use of Meditech [a

computer-based monitoring and record-keeping system] to aug-

ment 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 familyrelated to the individual responsibility of the staff involved inClaire's case. The best approach to improving care is toexamine caregivers' actions to ensure that there is an opendiscussion of the issues. Overall, we believe the caregivers in

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this case are competent and capable health professionals]. Inthis case, the professional Colleges are examining the actionsof the professionals involved. It is recognized that supervis-ing medical staff bear the responsibility for the actions of theresidents for whom they work, in keeping with the conceptof 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 char-

acteristics.

"In conclusion, the reviewers believe that Claire's deathcould have been avoided and the hospital has expressed itssincere and unqualified regret to the Lewis family. There wasa series of events, which collectively and in sequence led tothe fatal outcome. The action items detailed above will, it ishoped, lead to avoidance of a similar circumstance in thefuture." 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 con-tent of the review but by its very existence. "I didn't reallyexpect that," Brenda told me. "I didn't think they would evercommit 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 actu-ally 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 nei-

ther 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 jab-

bing 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 ofthem feeling colder. "It's a corporate apology," Brenda said."There's absolutely no personal accountability, and therestill hasn't been. We've not had one person from that week-end, involved in her care, say they were sorry for what theydid or didn't do that resulted in her death. And that is totallydifferent than somebody drafting up a letter and sending itto us and apologizing."

"It's like having your child killed by a drunk driver," saidJohn, "then getting a letter of apology from the insurancecompany." His main point of contention, however, was notwith the insensitivity of such an approach, painful as it wasfor 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 andBrenda 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 atti-

tude 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 flawedbut evasive and even misleading: It acknowledged humanerror but did not confirm the identities of the responsibleindividuals. It pointed to system-wide initiatives to improvepolicies and procedures but gave no indication that anydirect action — whether disciplinary, punitive, or even reme-dial — would be taken against specific doctors, nurses, ortechnicians. To its credit, the review "recognized that super-vising medical staff bear the responsibility," but it went nofurther on this crucial point than to defer to the judgement ofthe pending College hearings (which of course John, not thehospital, had initiated): "Overall, we believe the caregivers in

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this case are competent and capable health professionals]. Inthis case, the professional Colleges are examining the actionsof the professionals involved."

In other words, John and Brenda concluded, the reviewtold them nothing they didn't already know: "In my estima-tion," said John, "the hospital wasn't really cooperating.Their review is pretty much a verbatim outline of what I toldthem happened. It's astounding, when I think about it.Chronologically, the times and events, it's almost verbatim ofwhat I1 told them in that meeting of February 17*. It's theissues I've pointed out and nothing more. And they shouldhave 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 wasconvinced that Hamilton Health Sciences was aiming tomove the whole matter into the realm of litigation, where itcould be concluded, preferably, through a confidential out-of-court settlement. John and Brenda had every intention ofproceeding with the civil action, but, as John explained, theyhad 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 admis-

sion of guilt or responsibility.

With the hospital's letter of apology in hand, John andBrenda 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 thispoint better than Paul Harte. "That's something that John,I'm sure, would not have appreciated, because he didn't haveexperience in these cases before. Whereas I looked at it andsaid, 'Boy, I do this all the time. Not only have I never seenit, I've never heard of it.' Never heard of a hospital admittingthey had liability."

It certainly gives the appearance that they put their financial con-

cerns 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 inMarkham, just north of metropolitan Toronto, and sat withJohn and Brenda at their preferred meeting spot, the kitchentable. Yes, the case was obviously winnable, he confirmed,

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A C 0 F 6 1 3 C 4 6 3 3 4 3 2 7 9 5 0 C 1 F 6 A 4 D C 4 8 2 E 4Barbara Bates


but it was still far from straightforward. Even the simplestcases take a long time to resolve, and this one was still,despite the apparent acknowledgement of errors, relativelycomplex. Several errors had occurred, and they had involvedseveral different people. Who was responsible for what? Andwhat proportion of responsibility should each party bear? Itwas still far from clear, for example, how much responsibil-ity each party would actually accept and, therefore, whatportion of the damages they would share. The legal term forthis is "apportionment" — allocation of the relative amountof liability to each party. In this case, Paul explained, appor-tionment 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 thedamages that you're claiming for? And three is the bridgebetween the two, which is called causation — you have to tieevery screw-up to a specific hit of damage. And in medicalmalpractice, a huge proportion is about causation." If, inClaire's case, the key issue was fluid management, causationwould be a question of how much responsibility is attribut-able to the doctor, or doctors, and how much to a nurse, ornurses, or to some combination of these parties. The otherimportant aspect of causation, and shared responsibility, isthat Paul would likely be negotiating with two sets oflawyers — those of the hospital and those representing thedoctor(s). This is because the hospital's liability extends to itsnurses, who are employees of the institution, but not to thedoctors, who are not employees but "subcontractors." Thedoctors would be represented by the Canadian Medical

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Protection Association, while the hospital would be repre-sented by a separate insurer, such as the Health CareInsurance Reciprocal of Canada. Potentially, there could bemore lawyers involved: if, for example, there were two ormore doctors involved and they were not in agreement as towho did what, or whose actions bore greater causation, thoseindividuals would obviously need to have separate lawyers.

All of this was presented to John and Brenda not to dis-suade or discourage them but, rather, to be sure that theyunderstood 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 neitherJohn nor Brenda was surprised, or even perturbed, by theprospect of more waiting. The more important issue, in fact,was to get their priorities straight, to be clear on theiragenda. It was this bigger picture, in fact, that took up mostof their first meeting with Paul. "The lawsuit was not a mainfeature," Paul explained. "In fact, the work that had to bedone was very much centred on all these other issues firstand 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 sim-

ilar 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 heldbehind closed doors; he and Brenda wouldn't know theiroutcomes until after the fact. In the case of the College ofNurses of Ontario, the typically slow process would be fur-ther complicated by John's additional complaints:subsequent to his initial filing, John had added more thanthirty new charges, each of them based on his analysis ofClaire's chart. Any possibility of a coroner's inquest wouldbe contingent upon the results of the regional coroner'sreport — another long, slow procedure — which was alsopending. And, finally, as Paul explained, even under the best

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of circumstances, it would take several months to concludethe civil lawsuit. The good news was that Paul offered toassist them in all of these other proceedings. The bad newswas that, despite everyone's best efforts, the net result forJohn and Brenda was a lot more waiting.

It was impossible for John to sit back idly until all theseevents 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 contact-ing the media. Despite Paul Harte's advice — "Wait till afterthe College hearings," "Wait till the lawsuit is settled,""Wait for the coroner's report" — the wheels were alreadyturning. "Paul didn't want to go down that road," Johnexplained, "but it had to be done. We couldn't sit on it muchlonger. We just knew we needed to get public about it."

At the same time, John took it upon himself to stay inclose contact with Hamilton Health Sciences, assuming akind of dual identity: part watchdog, part agitator. Throughwhat became an ongoing series of e-mails — primarily withMargaret Keatings and, to a lesser extent, AndrewMcCallum — he intended to keep the hospital well informedabout his activities and observations. It seemed that everytime the subject of medical disclosure or patient safety cameup —• in the news media, in the medical journals (whetherCanadian 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? Unquestion-

ably. "I just kept hammering away at them," he said, "aboutaccountability and responsibility." But something quiteremarkable came of these salvos. John's queries and com-ments, barbed or otherwise, were always answered. And asa result, his e-mails, and the responses they elicited, becamepart of the process, part of his mission. Over time, it wasthrough these exchanges — not from the hospital's formalapology, not from its carefully worded official statementsand letters — that a truly meaningful and beneficial dialoguebegan to form.

As all these things were unfolding, another presence wasmaking itself felt. It was Claire's spirit. For some, it was hermemory, the palpability of her absence, that was with themconstantly, but beyond this it was Claire's vitality, not herdeath but her life, that lingered on. The essence of this littlechild continued to affect people — young and old, from nearand far — and inspire in them the desire, the need, to dosomething special, something life-affirming, in her honour.

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ne of the people who saw the Hamilton Spectator's story about Claire was Reg King, a retired business-

man. He promptly sent a copy to his daughter Susan, acommunications consultant based in Ottawa, who at thetime was working on a major public awareness campaign onorgan and tissue donation for one of her clients, HealthCanada. The centrepiece of the campaign was an eight-pagenewspaper supplement, which was to be inserted in majorEnglish and French dailies across Canada in late April. AsMr. King expected, Susan was captivated. "Like so manyothers," she explained, "I was deeply moved by Claire'sstory and shared the item with my colleagues, urging that weapproach the Lewis family for permission to run it in thesupplement." John and Brenda agreed without hesitation.

When readers came to the insert tucked into the middle ofthe paper, they were greeted by a huge, striking photographof 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. Thepicture 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 filledmost of pages z and 3. In addition to reprinting the Spectatorfeature in its entirety, the supplement included several of thereaders' letters that the Spectator had run in its editorialfollow-up. The story generated the same response as it hadfrom readers in the Hamilton area but on a far larger scale:this time, instead of reaching thousands of people, it wasread by several million.

Not long afterward, Susan King called John to tellhim that the supplement had been one of Health Canada'smost successful public awareness initiatives, and that Claire's

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H O N O U R I N G CLAIRE

story in particular had struck a chord with many readers.People wrote to their local newspapers in virtually everyregion of the country. Provincial agencies reported an imme-diate effect in donor registrations, and to a large extentHealth Canada also attributed this increase to the emotionalimpact 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 previ-ous fall at Norwood Park Elementary, Claire and Jesse'sschool, just after Claire died. Claire had a special affinitywith nature, with all living things. Here was a girl, John oncetold me, who would stand on the wooden sidewalk that ranalongside the marshes at Hamilton's Royal BotanicalGardens, and, when the chickadees saw her they would landon her hand, and she would feed them sunflower seeds.("Eighteen in one day!" Claire wrote in her diary followingher last visit there. "They must like me.")

Claire also loved butterflies. This would be a butterflygarden, Brenda had decided. And they had filled it with flow-ers and shrubs that were irresistible to butterflies: butterflyweed, butterfly bush, phlox, echinacea, lavender, and adozen varieties of colourful perennials. On Claire's birthday,John and Brenda visited the garden and installed a disk ofpink granite, on which was inscribed a monarch butterfly.The stone had been purchased through contributions fromNorwood Park's Environmental Club. The club had raised

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some money from a bake sale on Earth Day; they'd plannedto plant a tree on the school grounds but they chose to dosomething for the renewal of the butterfly garden, "inClaire's memory." Soon afterward, the club made anothercontribution, toward the purchase of a yellow floweringmagnolia tree, which had been planted adjacent to Claire'sgarden. This variety of magnolia is also known as "butter-flies," so named for the shape of its flowers.

Another gift to the environment was donated in Claire'smemory by her piano teachers, June and Verna Caskey. In theircard to the family, they wrote, "We know how much Claireloved animals, so we want our gift for her to be the preserva-tion of wild animal habitat. In remembrance of Claire, we aregoing 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 hadin fact purchased eleven acres.)

There were more trees to come. In Newfoundland, John'sniece, Emily Sopkowe, had spoken of Claire to her father-in-law, a doctor, also named John Lewis. Through hisinvolvement in The Canadian Physicians for Aid Relief, Dr.Lewis and his wife arranged to have 120 trees planted inClaire's honour as part of a project to reclaim soil and holdgroundwater for an impoverished African village. A friend ofBrenda's, Mila Khayutin, made a donation to The JewishNational Fund of Canada, which finances a variety of landreclamation and reforestation projects in Israel. As a result,a tree was planted in Claire's honour in the Yitzhak Rabin

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H O N O U R I N G CLAIRE

Park in Jerusalem. And closer to home, a flowering dogwoodtree was planted in the Thomas A. Beckett Forest in theDundas Valley Conservation Area. This tree was purchasedby a group of nurses from three of the wards in which Johnhad worked at Henderson Hospital. The tree was planted onMother's Day, and the Hamilton Spectator? now an ardentsupporter of the family after their work for organ donationawareness, was on hand to cover the ceremony. John andBrenda each took the opportunity to focus not on their loss,as Brenda put it, but rather "on the beauty of what Clairebrought into our lives and what I think all children bring toour lives." Reporter Brent Lawson wrote that John said "hisfamily has been helped by the examples of other familieswho have faced tragic losses." John cited the example ofPriscilla de Villiers, whose eighteen-year-old daughter Ninahad been murdered; Mrs. de Villiers went on to form CAVEAT,Canadians Against Violence Everywhere Advocating ItsTermination. "And I look at an organization like MothersAgainst Drunk Driving, which grew out of a horrible, tragicdeath." He referred also to the slain teenagers LeslieMahaffy and Kristen French, whose families had "carriedthemselves with dignity and grace."

Many people hoped that something positive and meaningfulwould come from Claire's tragic death too. One of the firstto try to make something happen was Karen Moncrieff, anassistant professor at McMaster University's School of

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BEWARE THE GRIEVING WARRIOR '

Nursing. She met John in the spring of 2001, when he wasone of three students she was tutoring as part of a publichealth nursing assignment. She didn't know John very well,but near the end of their project, in late August, John toldher about Claire's upcoming operation. From that time on,Karen could see his manner changing by the day. "There wasa shift in him. He became very concerned; the preoccupationbecame palpable."

Not long afterward, Karen also met Claire, when Johntook her with him to the university. Karen was stunned tohear, just weeks later, that Claire had died. She attendedClaire's funeral, accompanied by Sharon McKinnon, a publichealth nurse who'd worked on the project with her andJohn. Once again Karen was deeply moved, and the feelingstayed with her. "I remember thinking one day, 'Well, onlytime will heal,' but then I thought that's a phrase we use at atime when we feel powerless, when we feel there's nothingwe can do, and it keeps us from doing things." She did wantto do something for Claire and for this family. "So I spoke toSharon McKinnon, and also another colleague at the univer-sity 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 wasteaching at Mohawk College. Soon they were joined by apersonal friend of John's, John McGuire (known by one andall as "Doc"), an estimator for an industrial fabrication firmin Simcoe, about an hour southwest of Hamilton. Docresponded to an e-mail that Karen sent simultaneously to

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HONOURING CLAIRE

several people, most of whom she'd never met. "She asked ifI would be interested in getting together to see what wecould do," Doc explained. "I mailed back right away that Iwas in." One of the next to join was Paul Reimens, a col-league of John's from his music days, who is co-owner ofHamilton's Grant Avenue Studio, made famous by producerDaniel Lanois and his brother Bob, who'd recorded suchmajor international artists as Uz. Paul's first contributionwas 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, "itlooked like we'd have a run and raise some money inmemory of Claire. People seemed to think that worked, butthe more I thought about it, and also in keeping with someof the values that I heard John discuss, it was about childrenwho had a passion and a love, as Claire did. And then itbecame about art."

The next step, deciding how to give the project an artfocus, seemed obvious. Wasn't John formerly a musician?Hadn't Claire herself been an accomplished pianist? And didthe group not have access to a world-class recording studio?Maybe they could bring Canadian musicians together for arecording session and perhaps even do a festival. Maybe theycould convince some major artists to donate one of theirsongs to include on an album. And what if they got Claire'sclassmates to record a song or two — wouldn't that add aunique flavour, a special new meaning?

Several meetings later the group decided to ask John andBrenda 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 littleapprehensive about broaching the subject. "We didn't wantthem to think they had to go along with it just because it wasstarted. It was also a little weird because I had been going tothe meetings and not saying anything about it to John andBrenda when I spoke to them on the phone. Just cautious, Iguess, about their feelings."

John and Brenda were surprised to hear about the projectbut totally receptive. "It was nice," Brenda told me,"because they were all either friends or acquaintances. It wasalso kind of overwhelming, because we had not gone any-where that far in our thinking. We were still pretty deep inshock and grief, so it was pretty overwhelming that thesepeople got together and were thinking about this. I think it'sreally important to try and honour someone's life andremember them in that positive way."

Like most of the others, John and Brenda were veryenthusiastic about a music project, even though it hadn't yetbeen fleshed out. "I don't think that they'd put anythingtogether. We hadn't gotten that far. The initial idea was to dosomething musically, maybe put out a CD or something, tofund-raise, but it was just a very sketchy idea."

To help the group organize their ideas, Karen calledanother musician, the singer-songwriter Ian Thomas, one ofthe pioneers of Canada's fledgling pop music scene in the late'6os and early 'yos. More recently, Ian had also workedclosely with charitable organizations in Ontario and acrossCanada. He could provide valuable insights, Karen felt, notonly 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 haddone before. Ian, who also knew John through his music,readily agreed to talk with them. They decided that he andKaren would meet with John and Brenda at their home.

As they sat over coffee and tea at the Lewises' kitchentable, Ian listened attentively as the others described thegroup's ideas about a music project and about donating theproceeds. "Originally," Brenda said, "I think what every-body had been thinking, and talking about, was that thisshould be for organ donations, because she'd been an organdonor." But Ian saw things differently. "He looked at Claire'sartwork, and he was really wowed with her paintings. Hesaid, 'You know, she's already done her bit for organ dona-tion, and that part, sadly enough, is all about her death. I seesomething to honour her life, and what she was about, herexpressiveness. I see a very creative, artistic child here. Whynot make it for art? Because that was her — and why not doit for kids?'"

What Ian was proposing was a very different directionindeed: Instead of raising money and simply handing it overto one of the established institutions, why not do somethingindependently, something dedicated to children. Johnlaughed 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 intothe community, into the arts, something for children.'"

The idea seemed to crystallize everyone's thinking. "Weliked that immediately," said Brenda. "It sounded right." Itwould be much harder to organize, Ian cautioned them but,

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in his view, much more fulfilling and certainly far closer toClaire's own passions. Soon they took the concept a step fur-ther: Why not aim their efforts, and the money they couldraise, toward those with the least exposure to art and thefewest opportunities to experience it. "It's about the kidsthat John and I had seen in downtown schools," Karenexplained, "kids who maybe go to school without lunch fora week. This was about 'Who was Claire?' It was about get-ting her generosity of spirit back into the community."

The project now seemed to have found a clear directionand a compelling vision: using the arts, and relying on thehelp of artists themselves, to raise money to bring the arts tounderprivileged children. This concept took the group wellbeyond the domain of fund-raising alone: soon they'd need aformal structure, a business plan, a marketing strategy —and considerably greater resources than the group actuallyhad. On the other hand, the concept was unique, exciting,and, to arts-minded people, virtually irresistible. It was alsovery timely: years of government funding cutbacks (certainlyin Ontario if not across the country) had drastically reducedthe availability of the arts not only in cultural venues butalso in education; only the most affluent schools were able tosustain 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 thegroup, it didn't quite compel them to leap into action. Themeetings continued, the discussions evolved, but somethingelse changed. By the early summer, John and Brenda wereattending regularly, and their presence changed not only the

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tone and dynamics of the meetings but also the agenda. Itbecame less important to accomplish concrete tasks andmore 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 ofit," Karen explained, "but I wasn't attached to it looking acertain way, or that we'd have an album, or a concert, or adance, or a chocolate bar fund-raiser. It was looking at them— every time, moment to moment — and seeing what theyneeded and just moving with it." Jim Moore, KarenMoncrieff's husband and another of the group's foundingmembers, admitted that the lack of progress could at timesbe frustrating but that this was a small price to pay for whatthe meetings gave to John and Brenda: "The real andunstated purpose of those meetings was to create a safe andwelcoming world for John and Brenda, whose world seemedin a continual state of disintegration. As it turned out, webrought them into our lives at a time when so many otherfriends and associates seemed, to them, to be abandoningthem. We provided a place to express, and be with, theirgrief, which is all that really mattered at the time."

Brenda described the experience of those initial meetingsas 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 uncomfort-

able 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 morefulfilling, 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 importantthings in life. Family, love, caring, and respect. I always feltbetter after a meeting with those guys."

Jesse made a special contribution too. One night, as shand John were browsing through various nonprofit groups'web sites, they started talking about giving their group aname. Jesse wanted it to say something about hope — "notjust for grieving families, but for everyone," she explained tome. "I didn't want it just to be about hope for people who'velost a child or a sister or brother but hope for everyone, thatthere's always hope, always a time when hardship and painwill end." Looking for a way to capture this idea of the per-manence of hope, its ongoing presence, Jesse did an on-lineword search, and of the dozens of words that came up theone that stuck with her was "revolution" — like the planetsaround the sun, Jesse thought to herself, which are con-stantly 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 thegroup and adopted officially: Revolution Hope: The ClaireLewis Foundation.

Around this time, Jim Moore, who runs a software devel-opment firm, was putting the finishing touches on a web sitehe had developed for the fledgling organization. "Its pur-pose," Jim explained, "was to tell Claire's story, describeRevolution Hope, and suggest ways that donations might bemade." To Jim, the site was simply a basic prototype, a start-ing point, but when John and Brenda saw it they were deeplymoved. "I'll never forget John's reaction," Jim said. "Heseemed very touched. I think the site made it something con-crete for the first time."

A final touch of inspiration came from Claire herself.Recalling one of Claire's poems, Brenda suggested that theyincorporate one of its lines. It worked so well with both thename and the spirit of the fledgling institution that theyadopted it as a kind of motto, the Revolution Hope credo:"Have hope and the stars will keep shining."

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1 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 morequickly: the civil suit was just beginning; the College hear-ings hadn't been scheduled; the coroner's report was still notcompleted. But he could not sit idly by watching as all theseprocedures 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 wantedto know what was being done to prevent them. KarenMoncrieff referred him to a friend in Toronto, who in turnrecommended that he talk to another colleague, Dr. PhilipHebert. Dr. Hebert is an Associate Professor of Family Medi-cine at Sunnybrook and Women's College Health SciencesCentre in Toronto, where he also chairs the Research EthicsBoard and acts as an ethics consultant.

All but unknown two decades ago, bioethics has estab-lished an increasingly prominent role in contemporary health

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care. "Part of that," Dr. Hebert explained, "was philoso-phers saying we have something to add when it comes tomedical problems — knowing whether to put someone ondialysis, or to stop dialysis, or who should have a hearttransplant, or who's dead and who's alive. It's not the sameas asking cardiologists, 'What's the right dosage of digoxinfor heart failure?' This is a different sort of question. It's aquestion that requires moral thought and input." Ethicistscan also provide assistance to patients. "Often we'reinvolved in situations of ethical difficulty, not because wehave any brilliant solution to the dilemma, whatever thatmay be, but we can be sort of an independent ear. It's sort ofa psychotherapeutic role, in a way — not doing psychother-apy per se, but just to provide some kind of independent earto the situation."

A sympathetic ear, particularly from within the healthcare community, was exactly what John needed. Dr. Hebertwas the first independent medical professional he spoke toabout Claire, and except within a small circle of friends andfamily he'd rarely spoken about their case with anyone.

Their first meeting was taken up almost entirely by John'saccount of what had happened to Claire and what had tran-spired since then. Dr. Hebert spent most of the time listeningto John, hearing him out. "There was anger; there was dis-appointment on his part, obviously, as it would be of anyparent who had lost their child. At that point, the grief waspalpable."

They also talked about how Dr. Hebert might be able tohelp. The first thing Dr. Hebert offered was moral support.

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He strongly encouraged John's efforts to move the case for-ward. "I think I would have suggested that to him as well,"Dr. Hebert told me, "that this is obviously a situation ofgravity and seriousness, that couldn't be ignored, that neededto be followed through." He also pointed John to severalsources of pertinent information. "I felt he needed a way offinding whatever possible good could come out of this loss,so I suggested that here was some stuff he could look at toput it in perspective."

The most insightful, and most disturbing, of these sourceswere two major studies undertaken in the United States. Thefirst was a 1991 survey, the Harvard Medical Practice Study,which analyzed the incidence of medical errors by looking atpatient records from the 19808 at fifty hospitals in New YorkState. This study found that adverse errors occurred in threeto four percent of hospital cases — and that one patient in2,50 died as a result of such errors. Putting the issue into per-spective, one of the Harvard study researchers later wrote (ina 1994 article in the Journal of the American MedicalAssociation) that in icus errors occurred on average twice aday. This, he noted, "translates to a level of proficiency ofapproximately 99 percent. . . . If performance levels of 99.9percent — substantially better than those found in the icu —applied to the airline and banking industries, it would equateto two dangerous landings per day at O'Hare InternationalAirport and 31,000 checks deducted from the wrongaccount per hour."

The second major study began in 1997, when the Clintonadministration commissioned the Institute of Medicine (IOM)

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to study patient safety and quality improvement issues on anational scale. On the study's completion in 1999, PresidentClinton subsequently established a task force to -coordinatefederal initiatives and develop a strategy "to identify preva-lent threats to patient safety and reduce medical errors." Thetask force's report, submitted to the president in 2000, beganwith a summary of the IOM study and its implications for theAmerican 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, caus-

ing 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 inconven-

ience on the part of consumers — underscoring the need for

aggressive action in this area.

The stunning implications of the IOM study triggered sim-ilar studies in several countries. Philip Hebert participated inthe discussions that led to a Canadian patient safety study(launched in 2001), and he has kept abreast of patient safetyresearch throughout the world. "Every study shows a verysimilar 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 inCanada yet, we're doing it at the moment, but every othercountry — Australia, the U.K., Denmark — shows a ratherdistressing 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 dan-gerous hospitals are." At that time, there were no medicalerror statistics available for Canada, but it was commonpractice to extrapolate from the U.S. example: If there werean estimated 44,000 to 98,000 preventable deaths inAmerican hospitals, which the IOM described as "a nationalproblem of epidemic proportion," the problem in Canadawould be no less alarming. "About ten thousand people dieeach year in Canadian hospitals as a result of error," Johnpointed out. "That's an awful lot of people — an A3 2,0Airbus crashing every week, that's the analogy, with all onboard killed.3'

"That's the reality," said Dr. Hebert, "and unless we dosomething 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 aboutthe preventable deaths that went unreported? How manymight there be? How many doctors and nurses were notreporting their errors — and what was being done about it?It was this very issue, the ethical and moral implications ofnondisclosure, that led to the involvement of bioethicists."Quality improvement can only happen if you know aboutthe bad events," Dr. Hebert noted, "but if health care pro-fessionals cover up an event it's not in the chart." Getting

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people to step forward, however, is neither simple norstraightforward. "It used to be it was hard for physicians totell people they're going to die, breaking bad news. This oneis really hard, because now you're going to say, 'Your rela-tives died or were harmed because of what I did or didn'tdo.' That's doubly difficult. It's not only a tragedy — yourrelative has died — but the other thing is it's because of me."

Apart from the moral aspects, the legal ramifications of dis-closing error pose another obstacle. If anything, the systemseemed to encourage nondisclosure, if only to reduce any realor perceived exposure to liability. "That was the understand-ing for many health care professionals," said Philip Hebert,"that when I make a mistake the first thing I do is call mylawyer, call my professional malpractice insurer, before I talkto anybody. And the view was that the insurer is going to tellyou 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 insurancecoverage/And then there's institutional interests. Institutionsdon't disclose either. Institutions have their own interests inthese cases, and it can be hard for them to own up."

Bioethicists provide guidance and policy direction tohealth care practitioners and administrators, but, like allhealth care professionals, they too have a responsibility topatients and their families. Philip Hebert argues that the bestoutcomes occur when the interests of patients and their fam-ilies are the first priority for all concerned. He cited anexample that he'd seen first-hand, in a case at SunnybrookHospital in the mid-1990s that involved the family of one ofhis 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 littlecomfort. Based on his own experience at Hamilton HealthSciences, he viewed Dr. Hebert's example as the exception,not the rule. "Because of the way they treated me, and theway they treated this death, the way they tried to comeacross — basically, 'We had nothing to do with it, no wrongon our end,5 all that stuff." The statistics and research stud-ies seemed to support John's scepticism too. It might well bethat a majority of physicians do disclose their errors, but inJohn's view the minority was far too large, and the conse-quences of their silence too devastating, to be ignored.

Dr. Hebert pointed out that other studies, regrettably, hadconfirmed 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 per-cent, that say patients don't have a right to know about it."

r->

John soon learned about more cases that were all too similarto Claire's. The first of these came one evening in late April,when he received a phone call from Donna Davis fromCarievale, a small town in southeast Saskatchewan aboutthree hours from Regina. "It was just completely out of theblue," said John. "She was crying, really upset."

As Donna explained to me, she had just read the HealthCanada supplement, and she wanted to talk to John abouther 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. "Thatwas one of the first things out of her mouth, that they screwedit up. She was a nurse, and she knew exactly what happened."

It came as a shock to both John and Donna, but forDonna the similarities between their experiences also served

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as a kind of validation. "It was devastating," she said, "andyet 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 look-

ing for a reason, you're looking for someone to blame it on."

In the early morning hours of March 27*, zooz, nineteen-year-old Vance Davis lost control of his truck; it rolled overand went off the highway. He was able to call for help — notto 911 but directly to the RCMP'S call centre in nearbyCarnduff. He called two or three times — in his last call tothem, he said, "I'm cold. Where are they?" — but the RCMPdidn't respond immediately. When they did arrive on thescene, Vance wasn't there. Presuming, as they later told hisparents, that he'd just "got scared and was hiding at afriend's," they made little effort to find him. And they didn'tinform his parents of his accident, or that he was still miss-ing, 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 havecalled them. Jack and Donna organized their own search,assisted initially by friends and neighbours and, later thatnight, 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 ofthe nightmare, but, as Donna recounted to John and later tome, 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 ter-

rible, 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 hap-

pened. 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 icuand placed under the care of an intensivist. There was a neuro-surgeon on call, and on duty in other wards throughout theweekend, but despite Vance's serious head injuries he was nevercalled.

The next day Donna and Jack saw that Vance's conditionappeared 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 bemoved from the icu to one of the regular wards. "Theybrought a bed down from the ward, and they made him walkfrom one bed to the other. After they came out, to wheel himup to the ward, he was whimpering and crying in pain."Donna joined him, intending to remain with her son for thenight. Before long, she again became alarmed over his symp-toms. 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 unableto get Vance mtubated, nor could the doctor. After severalfailed attempts, they called in the anesthetist. "On their sixthattempt, they were finally successful in intubating him. Thenthey called the neurosurgeon that was on call, and that wasthe first [time] that anyone had seen him since Thursday."

The OR and operating staff had been booked, but the neu-rologist, after reviewing the CT scan, determined that itwould be better to wait until the morning. Vance wasbrought 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, con-

sequently, 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'tstop there. As John sat listening in horror to Donna, shebegan to talk about the hospital's deathly silence. "The hos-pital hadn't spoken to them," John said. "It was just silencebetween them, which is typical. They had one meeting withthem, the usual follow-up on a death, and it just went terri-bly for them, it went absolutely nowhere."

The silence started the moment Jack and Donna left theoperating 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 emotionallycharged pauses, and when she finished telling her story therewas a long silence — relief, on Donna's part, and shock anddisbelief, on John's. But Donna wasn't calling simply for con-solation. "She was wondering what to do," John said. "At theend of the conversation, it was 'What do I do now?'" He sug-gested that, as a starting point, she and her husband should filecomplaints with the Saskatchewan Colleges. He also invitedher to call him if she thought there was anything he could doto help. He and Donna exchanged e-mail addresses, and soonall four of them were communicating regularly.

"When Donna and I talk," Brenda told me, "it's aboutthe emotional stuff, and I think when her and John talk it'sa lot about the medical stuff, the hospital stuff. I think she'svery isolated. They live in a very small community. I think ina way they almost feel, not shunned by the community,maybe that's the wrong word, but, you know, you do feelapart from other people when this happens, you just feel dif-ferent."

Donna described her connection with John and Brenda asa 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 some-

body 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 andSusan Atkinson, who live in Hampton, New Brunswick. Hecalled them after hearing about their plight on a news pro-gram. That story focused on the family's efforts to have theChief Coroner of New Brunswick reverse his decision andcall an inquest into the death of their little girl. "John man-aged to find our number and basically called us up out of theblue," Susan Atkinson told me. "He was calling to ask whatwe did, what the process was that we had to go through, toget our inquest."

At one o'clock in the morning of February 9*, 2001, six-year-old Ashley . Atkinson was rushed to hospital byambulance after a severe croup attack left her unable tobreathe. She'd had two other attacks during the previousyear and a half, both of which had been treated effectively atthe emergency ward; this attack was far more severe, yet atno time did anyone consider it life-threatening.

Ashley continued to have great difficulty breathing, andat one point she coughed up a small amount of blood-stainedphlegm. The on-call pediatrician and ear-nose-throat special-ist 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 ittakes so many muscles for your body to breathe, that theywere worried that she was going to get tired, and when kidsget 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 chil-dren, Ashley resisted the physicians' attempts with all herstrength. "They couldn't get her sedated. They couldn't gether settled down. So that's one of the issues that comes in thewhole care and treatment of our daughter — the drugs theyhad used initially, and what they continued to use, to keepher sedated."

When the drugs listed on the ER'S standard protocol fsedation didn't work, the on-call anesthesiologist was sum-moned. He prescribed a drug called propofol, the use ofwhich for children is, at best, highly controversial. Thepropofol did help calm Ashley down, but she remained rest-less and was showing obvious signs of pain and discomfort.Consequently, more drugs were administered, and thus beganthe vicious circle. "They also had her on morphine," Susanexplained, "because the anesthetic drug, that's all it is — sothere's no pain comforting in that drug — so the morphinewas 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 mor-

phine. 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; onSaturday morning, her x-rays indicated that she'd also devel-oped pneumonia. She remained relatively stable during thenight, however, and the decision was made to extubate her.They took her into the operating room so that at the sametime they could also attempt a bronchial scope to see if theycould locate the source of her bleeding. But the extubationfailed. As soon as the tubes were removed, Ashley went intorespiratory distress and had to be re-intubated. Despite thesesetbacks and the apparent advances of her illness, theAtkinsons were never informed that there was any cause forconcern. "The impression that we got from them," Susansaid, "was 'Okay, we're on a ventilator; yes, she's showingsigns of pneumonia,' but we at no time got any impressionfrom 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 gether out of here, maybe transfer her to Halifax.' We didn't getthe 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 atall. "She would get to the point sometimes where she actu-ally did open her eyes," Susan said, "and we talked to her acouple of times, but after a while they just — they had herknocked out flat. Wouldn't let her move at all." The headpediatrician spoke to them that night. He explained that theywould be extubating Ashley in the morning, and he insistedthat Chris and Susan go home to get a good night's rest (theyhad both been at the hospital since Thursday) so that theywould 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 ahelicopter to transfer Ashley to Halifax. The earliest shecould be picked up was that evening; when her conditioncontinued to worsen, he called again to reschedule, first for6 p.m., then for noon. When the helicopter did arrive, how-ever, 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 dueto complications arising from influenza and pneumonia.There was no reference to the possibility of any undue effectscontributing to the outcome. But Chris and Susan were con-vinced that there had been serious flaws in Ashley'streatment. That very evening, despite the shock and trauma,they demanded an investigation. "When she had passedaway," 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 asbewildered as we were, and nobody could tell us a damnthing. We were overwhelmed with grief, but so pissed off andmad at what had just happened, and that nobody could tellus why, that we demanded, that an autopsy be done. So thatwas the start."

The Atkinsons also requested an investigation by the localcoroner, and while that was under way they carried out theirown, beginning with a crash cpurse on the battery of drugsAshley had received. It didn?t take them very long at all,Susan told me, to discover that their suspicions were wellfounded.

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 completethe investigation. It concluded that an inquest was not justi-fied. Obviously not satisfied with the local coroner's report,Chris and Susan took matters into their own hands. Usingthe information they'd gathered during their research, theycompiled a package outlining Ashley's case and the manyunanswered questions regarding the drugs Ashely had beengiven. The package was mailed out to local politicians, asSusan explained, "to see if we could somehow lobby somehelp from the political area." At the same time, the materialalso went to local newspapers and radio and TV stations, andfrom 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 situ-

ation, 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 pick-

eted outside of her office while we were having our meeting.

The Minister of Public Safety, inspired perhaps by thepublic sentiment and widespread media attention, agreedthat the Atkinsons had a legitimate case. Would they havesucceeded in getting their inquest without all the publicity?Susan has no doubt that the community made all the differ-ence in the world and that they, too, deserved answers. "Wehad a lot of community support because people were basi-cally like we want to know what happened. And they hadevery right, as much as we did, to know publicly what hadhappened. First we have the chief coroner saying 'No, we'rerefusing you the inquest; we believe all the answers havebeen found.' But then the Minister of Public Safety turnsaround and says, 'Well, yes, we're going to issue an inquestbecause it's just the right thing to do.' So I'm like, 'Okay, ifit'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 thelocal media in getting their story out. "The media, I wouldhave to say, have covered what has happened to us quitewell. When things started to heat up, they were there. I thinkthey did as much pressure, with us, as the public did. Ithelped because it kept people aware of what was going on."

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In talking and corresponding with Chris and Susan, John wasimpressed by their tactics as well as their determination. "Ifyou 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 thanthe Atkinsons. Chris and Susan were heading into theirinquest, whereas in John and Brenda's case the coroner'sinvestigation was still under way; so, too, the decisions ofboth Colleges were still pending. The Lewises' inquest, if andwhen it was called, was much further down the road. AllJohn and Brenda could do was wait and see, hoping for theright outcomes.

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utwardly it might have appeared that John was active,engaged with the world, but inwardly his sense of iso-

lation remained. His writing captures some of the turmoilthat continued to dog him through every waking hour andwas 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 phys-

ically 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 over-

whelming 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 hon-

oured 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 experi-

ences 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 dis-

torted, 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 back-

ground 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 wasa welcome turn of events. His only other employment thatyear was limited to some freelance research work throughMcMaster University, and for several months the family'sbudget had been covered mainly by Brenda's salary — plus a

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heavy and very costly reliance on credit cards. On the otherhand, the job also marked John's first return to nursing sinceClaire's death, which, from an emotional perspective, meantthat it was uncharted territory.

John worked in the hemodialysis unit at St. Joseph'sHospital, another of Hamilton's major health care institu-tions (but not part of Hamilton Health SciencesCorporation's network). His job involved operating dialysisequipment, which filters and cleanses the blood in patientswhose kidneys are no longer functioning., "It's not real com-plicated work," John explained. "There's just a lot of littlenitpicky things you have to learn to do. There's a lot of tech-nology, too, a lot of programming. You're basically turningover eighty to a hundred litres of a person's blood in fourhours, so there's things you gotta do, and know, or you'll killpeople. And it's really easy to kill them, really fast, so the ori-entation's eight weeks long, it's pretty intense. There's lots ofextra classes besides being on the floor and doing thesethings, hooking this up, and sticking needles in people."

St. Joseph's had arrangements with several other hospitalsin the region whereby it shared its resources, including itsdialysis system operators. Each hospital has its own dialysisequipment, but only St. Joseph's has sufficient specializedstaff. The nurses who travel to the other hospitals to performthe dialysis are called "outriders." John accompanied one ofthe outriders as part of his orientation. They went toHamilton General and happened to cross paths with Dr.Peter Kraus, Hamilton Health Sciences' Director of CriticalCare. He and John hadn't seen or spoken to each other since

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their disastrous encounter in February. "I was dialyzing apatient in the icu," John recalled. "He came in with a gaggleof 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 pre-

tend 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 ori-

entation,"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 posi-

tion 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, Johnseemed to be doing well; he was becoming proficient at hiswork and enjoying it. "I really liked it," he said. "It wasreally interesting stuff. I really liked kidneys and all thatstuff. I worked hard at it and got pretty good at it, good withthe needles." From a technical standpoint, he was capable ofhandling the work long before he completed his training.

Emotionally, however, it was another matter. He wasworking in a hospital environment, again dealing directlywith patients, many of them in an intensive care context, andhe 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 dif-

ferent. 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 forty-

five-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, cer-

tainly wasn't assimilating.

It all caught up with John one day in early July. It mighthave started earlier in the morning, when he and Jesse hadbeen 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 goto camp for a week and not say good-bye to her,' but he wasangry with her, she was angry with him. I can't even remem-ber what the fight was about. We were all so stressed thenand stretched so thin."

John's shift began at one o'clock that afternoon. The inci-dent that pushed him over the edge came that evening, whenhe was attending to one of his patients. "She was in her earlythirties, and she had diabetes really bad — and I got her intoa bed, got her settled, got her hooked up and her machineprogrammed, and about half an hour into it she crashed. Shecrashed and burned. A couple of days later the familyremoved her from life support." John knew that she hadbeen gravely ill for some time, and her death was not unex-pected, but nevertheless it was a traumatic experience, anall-too-familiar replay of his last moments with Claire —seeing her crash, watching her get intubated, knowing thatshe was only alive because of the machines around her. Hedid not think he could ever again bear to see such a terriblesight.

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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," Brendarecalled, "and he didn't. We had a fight, he left to go in onhis shift, and he never made it down there. He turned aroundand came home, and we had more words. He went out for awalk, came back." Then he went out into the backyard andshaved his head. "I freaked out at him," Brenda said. "I said,'What the hell are you doing? What's going on?' And he justwouldn't talk to me." Then he decided he needed a pair ofshorts. He took off his jeans, cut the legs off, and put themback on. He got himself a water bottle, picked up his knap-sack, and left again.

Seven hours after leaving home, John found himself at thedoor of St. Joseph's Hospital. He went to the emergencyward and asked to speak to a psychiatric nurse. After she didthe initial triage assessment, he spoke to the emergencyphysician. "There was no intent to harm myself, no intent toharm others, and at the end of it all the physician said,'Would you like to be admitted?' I said, 'No. What's admit-ting 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 feel-

ing, 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 himand relieved that he was okay," she said, "but I was upset atthe same time that he left without saying where he wasgoing."

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 tosee John trudging off that afternoon, bald as a billiard ball,it would have made for a peculiar sight indeed, but for Johnnothing about it felt strange at all. He told me it felt like themost 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 out-

sides 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 Brendamet face to face with Donna and Jack Davis for the firsttime. The Davises were travelling through to Moncton tovisit their daughter, and they had a two-hour layover inHamilton. The two couples arranged to meet at the airport."It was weird," John said. "We recognized each other imme-diately. We'd had no prior description of each other, nopictures, and I knew her immediately. It was in quite acrowd, it was a jammed flight, and I just went and put myarms 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 won-

derful but so sad that we had to meet that way. We had tomeet over losing our children. We felt like we had knownthem all our lives, they were so easy to talk to, and we reallyhad a connection. Sometimes women find that easier thanmen, hut my husband, too, he just felt like it was destined tobe, like we just had to talk to them, and it helped us so muchat the time."

As they sat in the airport coffee shop, Donna proceededto bring John and Brenda up to date on the progress, orrather the lack of progress, in their case. "They were stilllooking at a lawsuit," John explained, "and they were tryingto get some answers to what happened to their son, and theywere getting nowhere."

More than five months after Vance's death, the family hadyet to hear a word from the hospital.

John wasn't surprised to hear about the hospital'ssilence, but still he was infuriated. His anger stayed with him.

This is what incenses me in this whole thing. They're public hospi-

tals. 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 main-

tain 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 butalso by its effects on the families these institutions are intendedto serve. He wondered if it was time for him to turn his atten-tion to such larger issues. His goal was not to divert his focusfrom Claire's case but, rather, to link her tragedy — andVance's, and Ashley's — to the risks and perils that any familymight encounter. He wanted people to know what they, too,might have to deal with in facing such a tragedy themselvesand how they, too, could expect to be treated by health careprofessionals. Perhaps, he decided, it was time to go public.

After all, look at what the Atkinsons had accomplishedthrough their persistence. Look how influential the media'sattention had been in getting Ashley's case to an inquest. Thethought of approaching the media wasn't new to John or, forthat matter, to Donna; in fact, it had become one of therecurring themes of their talks and correspondence. "Weboth wanted to make the public aware," Donna told me."And we wanted to let the medical profession know thatthey 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 everything^ou 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 fore-

warned?

John felt it was time to act despite the potential ramifica-tions on his lawsuit and the other proceedings. Prudent ornot, with or without Paul Harte's approval, he felt that hehad no choice in the matter. "It just wouldn't go away," hetold 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 hardto make it.go away."

So John sat down one night at his computer and wrote aletter. He briefly outlined Claire's case. He talked about thepeople at the hospital, their attempt to shirk their responsi-bilities, their sudden turnabout, and their highly unusualletter of apology. He talked about the much more commonreality — the reluctance of public institutions in and aroundthe health care system to deal openly, honestly, and compas-sionately with families. He thought that the Canadian publicmight be interested in seeing just how serious the "hiddenepidemic" of medical error was and how impenetrable thehealth community's "culture of silence" had become. Heinvited inquiries. He urged interested parties to contact himfor further details and more extensive information. Andwhen he finished, he sent the letter to every major Canadianmedia organization he could think of.

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c/t&jfcfob /O

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 forJohn and Brenda, even when things got busiest, the entireseason seemed to drag on and on. On one hand, there wasoften too much happening at once; on the other, it seemedthat nothing was ever fully resolved and that they weremaking little real progress. Throughout the fall and into thewinter, the family seemed to grope along from one day to thenext, watching as the events and activities streamed by them,but they felt detached, disconnected from everything andeveryone around them, including each other. "We justseemed to be all on different paths," Brenda told me. "Reallyisolated 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 con-

necting 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 any-

body else's grief and pain, because our own was just too much for

ourselves individually.

John appeared to have overcome the emotional trauma hehad undergone earlier that summer, but now the strain wastaking its toll on Brenda. "I was reliving the entire summerand fall before," she said, "and it was killing me. Everyappointment she had, I could remember clearly. Whateverthe date was, I'd think about what I was doing that day theyear before — you know, we'd taken her to see the neuro-surgeon today, today she had the CT scan, today she had theMRI — and it was just awful, remembering all that stuff. Itwas more than remembering, it was like reliving it. It wasreally intense." By October, with the approach of the firstanniversary of Claire's death, Brenda felt she was no longerable 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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OUT SN THE OPEN

The first response to John's letter to the media was fromMaclean's magazine. Just days after John sent it out, staffwriter Danylo Hawaleshka called John from Toronto andmet with him and Brenda in Hamilton shortly afterward.John was also approached by TVOntario, the province'spublic broadcaster, but Paul Harte convinced him not tomake any television appearances while the civil suit wasunder way. (Paul agreed, reluctantly, that the Maclean's storycould proceed, provided that the names of physicians andnurses and other staff were not used.)

By legal standards, the civil action was beginning to movequickly. Paul had filed the family's statement of claim inmid-June, In August, he was contacted by the lawyers repre-senting the hospital and the physicians, and by Novemberthe possibility of settling the claim was on the table.

The CNO complaints process, on the other hand, had beenproceeding at a snail's pace. Subsequent to his initial com-plaint, which had been filed in October, John had submittedmore than thirty new complaints the following spring,against six more nurses. The College attempted to discour-age 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 letterfrom the CNO'S Complaints Committee informing him thatthe hearing had been concluded regarding three of the fivenurses named in his initial complaint. Actually John receivedthree notices; they were form letters, each one identicalexcept for the name of the nurse. The committee's decisionwas to issue each of the nurses a letter of caution, which wasdescribed as "a non-disciplinary form of warning . . . whichwill articulate the committee's concerns about practice defi-ciencies that were identified as a result of a review of theinvestigation." A letter of caution is much more serious thanit might sound, John pointed out. "It's only one step beforea suspension or charges are laid. It's on your record fortwenty years; it follows you everywhere you go in your job."

Nevertheless, John found the decision unacceptable andresponded immediately by filing an appeal. His principalargument 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 nursesshould have been required to take some education or retrain-ing — in drug management, to use one important example.Instead of filing against each of the cases, he took a word ofadvice from Paul Harte: "Pick your fights carefully," he sug-gested, "otherwise it will drag out forever." John appealedthe decision only against the nurse who was on duty the dayClaire died rather than all three nurses. This set in motionyet another process that, not surprisingly, would take severalmore months to complete — all of which, as John notedcaustically, would be held behind closed doors. "It's not atransparent process, and it should be."

One other activity that took shape that fall was the ramp-ing up of Revolution Hope. In early September, after severalweeks of relative inactivity, the group began to meet morefrequently, with the intent of getting better organized. Theirnew priorities included the development of a business plan,a vision statement, a marketing strategy, and, eventually, anew fund-raising event.

But suddenly all of this fell into the background as theyear ended with an abrupt and sharp turn of events — withJohn and Brenda finding themselves in the centre of a newstorm of pain and anguish and controversy. On December 2-3ld,2,002, they received word from the office of RegionalCoroner Dr. David Eden that the coroner's review, written bylocal coroner Dr. Richard Porter, was completed; fourteenmonths 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 droveout immediately to St. Catharines to pick up the long-awaited, and highly anticipated, documents.

The package was waiting for them at the receptionist'sdesk. John picked it up and opened it, deciding to take a quicklook before leaving. Within seconds, he saw that the reportwas not at all what he'd been expecting. On page i of thereport's two pages, under the heading of "InvestigationalDetails," 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 pagecame "Medical cause of death: craniopharyngioma." Belowthat, under "Due to/as a complication of," was a blankspace. And the space under the next heading, "Contributingfactors," was also empty.

John could not believe his eyes. Turning to the reception-ist, he demanded to see Dr. Eden. He was in the office, sheexplained, but he was busy. "Well, I suggest you get himunbusy really quick, right this second, because I'm not leav-ing 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 nowto bring in the Chief Coroner? His choice. You go ask him."

Dr. Eden appeared moments later. "Mr. Lewis, how areyou? How can I help you?" he said, ushering John andBrenda 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 attrib-ute 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 thisout? You've got to be out of your mind to hand me this."

Dr. Eden stuttered and stammered, John told me; insteadof trying to appease John's anger, he only made it worse —commenting, for example, that nothing about the investiga-tion "could have changed the outcome" of the tragedy. Johninsisted that, as Regional Coroner, Dr. Eden was obligated toensure that a thorough investigation was provided; clearly hehadn't. How, John asked, could there be any other conclu-sion than to hold an inquest?

"Well, Mr. Lewis," he said to them, "you have to under-stand 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 himoff."

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 noth-

ing they could have done." End of story.

But John and Brenda Lewis are neither unsuspecting norunknowing. Sensing that they were wasting their time tryingto reason with the Regional Coroner, John got up quietly,

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saying nothing further, and he and Brenda left. It was lessthan forty-eight hours till Christmas, but there would belittle joy in their home, and little celebration. There was toomuch anger; there were too many old wounds — and freshones — to attend to. And, for John, there was too muchwork that had to be done.

It didn't take him long to identify what he regarded asgross errors and inaccuracies throughout both reports; bythis stage, John was able to spot the shortcomings, andrespond 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 Statementlisted nine points that the coroner either missed, misunder-stood, or ignored. Death was "not of natural causes," Johnwrote. "This child dies of catastrophic cerebral edemadirectly related to the exogenous supply of DDAVP adminis-tered with hypotonic solutions." Death in fact was "notnatural disease. This child had no disease that resulted in herdeath, as all vital organs were successfully transplanted intosix individuals, impossible with any disease present." Deathwas "not from craniopharyngioma. Considering the tumourwas completely excised and eradicated October izth, 2001,how is it this now nonexistent tumour goes on to kill her twodays later?"

John found Dr. Porter's narrative section of the statementnot only inaccurate but utterly perplexing. It refers to thepresence of diabetes insipidus pre-operatively despite thelack of any evidence of such in Claire's records. It refers to

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"normal postoperative electrolyte problems," but, as Johnnoted angrily, such symptoms "do not include seizureinduced by hyponatraemia related to misuse of DDAVP." Hewent on to point out that Claire's autopsy clearly indicatedprofound cerebral edema as the cause of death. Hedemanded to know why the coroner made no reference to"serial doses of DDAVP in conjunction with hypotonic ivsolutions," even though Dr. Porter's own office had advisedthe family a year earlier that the local coroner had called thehospital to express his concerns about the inherent risks anddangers of such a combination.

John took great exception to Dr. Porter's total lack of ref-erence to the key issue of DDAVP use. On the other hand, hewas astounded to see that almost half the narrative text dis-cussed in great detail the steps taken in and around the organand tissue harvests. "I had great difficulty," the coronerwrote, "accepting that there was nothing that could be donefor this little girl's gift and asked to talk with the surgeons ofthe Toronto and Ottawa transplant teams directly. It tookvery little conversation to explain the circumstances andboth agreed that the harvesting should proceed posthaste."Finally, John stated his deep concern about the coroner'stotal disregard of the issue of post-operative care — "i.e.,improper medication administration, improperly writtenorders, incorrect diagnosis postoperatively," and more: Hislist went on for another five lines.

"One paragraph from the coroner fourteen months postdeath," he concluded, "full of erroneous information, with abizarre focus on the organ donation and not the causes of

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death, cannot possibly satisfy the questions and issues raisedby this horrific and senseless death of a profoundly loved n-year-old child. We, the family, and the public of Ontarioexpect far more from our public officials than is representedin this inaccurate, incomplete and unfocused investigation."

John's response to the PDRC report was more technical innature (and twice as long as the PDRC review itself) but noless abrasive than his assessment of the coroner's statement:"The pediatric death review committee's review is full oferrors and omissions also, leading the reader to questionexactly how thorough a job and understanding this commit-tee had of this case." John challenged the review on tenpoints, ranging from technical errors and inaccuracies (timesand dosage rates of DDAVP administration, measurement ofserum sodium levels, fluid balance levels) to the larger issues,the most serious of which was the review's failure to addressthe matter of DDAVP use. "Death was not a result of fluidtype alone, as the committee attempts to imply; DDAVPplayed a crucial role in her death. . . . The committee makesno mention of the serial doses of DDAVP, in fact does noteven record them on the chart found on page five."

Finally, John stated that he was deeply offended by thecommittee's concluding remarks: "The Committee endorsesthe findings and recommendations of the case review done atMcMaster." "The committee," John wrote, "an independentpublic body, comes up with no recommendations of its ownin this horrific case? The Committee does not question orwillingly want to know the processes that lead to communi-cation breakdowns, leading to misdiagnosis, leading to

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incorrect treatment, leading to mindless administering ofserial doses of DDAVP, ultimately leading to this child'sdeath?" Reiterating his point regarding the coroner's roleand responsibilities, he concluded his letter by stating,"Fourteen months of waiting to receive a total of five pagesof an erroneous assessment of this child's death is not what Iwould suspect the public of Ontario would endorse from thispublic office, considering the issues of care, system failures,and serious issues of patient safety related to this child'ssenseless death."

John was satisfied that his review covered his concernsclearly enough, but he wasn't sure what to do with it, howto use it to its greatest effect. He sent a copy to Dr. PhilipHebert and asked for his comments and suggestions. Hebert,deeply upset by what he read, immediately wrote back toJohn with a list of names and addresses; most notably, itincluded those of Ontario's Acting Chief Coroner, Dr. BarryMcLellan, and Deputy Chief Dr. James Cairns. John sent outhis review, dated Friday, December 17*. In addition to theprovince's top two coroners, it went to their superior, theMinister of Public Safety; copies also went to the Ministerand Deputy Minister of Health.

The first response came immediately after the holidayseason ended. John had resumed classes that week atMcMaster University. When he got home and checked hisvoice 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 meet-ing lined up?"' John returned the call that evening, phoninghim late enough to ensure that he, too, would get voice mail:He wanted to leave a message rather than speak to the coro-ner 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 tofruition, another whirlwind over Claire's case was gatheringmomentum — and it all happened under the glaring lights ofthe news media, both locally and nationally. It began withthe release of Maclean's arid the first published story of whathad actually happened to Claire. The article gave a vivid andchilling account of her death and of the family's ordeal bothduring and after the tragedy. It zeroed in on the family's dis-astrous meeting with Hamilton Health Sciences officials andthe hospital's subsequent apology. It concluded with thefamily waiting for the results of the coroner's report, thusimplying, just as John and Brenda had assumed, that his

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report would provide some answers and some solid ammu-nition for their case for an inquest. Ironically, the magazinehit the newsstands on December 23rd, the very day of Johnand Brenda's meeting with the regional coroner.

On December 27*, the Hamilton Spectator ran a full-length, front-page feature under the title "A Grief withoutEnd." The story added little to what was covered in theMaclean's feature, but its impact in the local region was fargreater. On Saturday, December 28th, the Globe and Mail rana story, under the headline "Parents' Hope for InquestDashed," that brought Claire's case — and John andBrenda's long-running battle for disclosure and accountabil-ity — right up to date. "This advocacy," it quoted John, "isborn of pain and heartache, and it's all about the issue ofpatient care and patient safety."

The Spectator followed suit, running another story onDecember 31" — "Coroner Says No to Claire Inquest." Thestory did not escape the attention of David Eden. He con-tacted the editorial offices of the Spectator on January 2nd toexplain what he called the Lewises' unfortunate "misunder-standing" of the document he had issued. This phone callresulted in another article, which ran the following day,"Inquest May Still Be Called into Girl's Death." What Johnand Brenda thought was the "final" report was, according toDr. Eden, simply the local coroner's report; the actual "final"one would be forthcoming from his office, as would the finaldecision on calling an inquest. "The report says 'noinquest,'" Dr. Eden told the Spectator', "but that is simply afact that when Dr. Porter sent me that report, no inquest had

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BEWARE, THE GRIEVING WARRIOR

been called." He suggested that, rather than pursuing "acostly 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 thatwould 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 edi-torial argued that, as its headline proclaimed, "Claire Lewis,Family Deserve an Inquest." "In the absence of a formalpublic hearing as provided by an inquest, our concern is thatquestions will inevitably linger as to whether authorities havetaken every possible step to prevent a similar tragedy. . . .The case for an inquest is strengthened by serious concernsexpressed by Claire's father John Lewis about what he seesas the inadequacy of Porter's report."

John took issue with a different matter altogether, onethat he regarded as yet another of Dr. Eden's highly inap-propriate actions. One of the Spectator's reporters had calledJohn to tell him that Dr. Eden had Called the editor to com-plain about the paper's presumption about the inquest. Onhearing this, John wrote immediately to the Acting ChiefCoroner, 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 theEarth," as John put it. "They yanked him — off this caseanyway." When John later asked Jim Cairns what hadbecome of him, the Deputy Chief Coroner would say onlythat "He is no longer in that office."

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jfafter a series of exchanges between Paul Harte and JimCairns addressing various details pertaining to Claire's

case, the meeting took place at the Deputy Chief Coroner'soffice in Toronto on February 19*, 1003. Paul accompaniedJohn 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 ReviewCommittee's review.

Once everyone had taken a place around the board table,the lights were dimmed; using a laptop computer. Dr. Bohnopened the first page of the PDRC review and projected itonto a large screen. The atmosphere was cordial but tense;John's manner, on the other hand, was adversarial. His angerover the errors and inconclusiveness of the PDRC review hadnot diminished, and John was determined to be neitherintimidated nor deterred from his singular objective: Gettingan inquest. "I had decided at the get-go, Tm not looking atyou 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 pointsthat were relatively minor — dates, times; it quickly becameapparent that his intention was to challenge the review'soverall credibility. "It's ridiculous, you're wrong," John keptinterrupting Dr. Bohn. "You need to see this again," he said,pulling out Claire's chart. "Who did this review? Are youpeople out of your minds?"

Brenda tried several times to settle him down, but Johnwouldn't listen. "I just kept at them," he told me. "I pulledout her chart and said, 'Look, this is the number. You'rewrong.' 'Oh. Well, we'll make a correction.' Blatantly justwrong. Things that just didn't happen."

Back and forth they went, with Dr. Bohn and the DeputyChief Coroner trying to make their way through the reviewand John peppering them with questions. His main con-tention was cause of death, which the review, in his opinion,had completely sidestepped by not addressing the use ofDDAVP. As he had written in his letter of response, "Deathwas not a result of fluid type alone as the committeeattempts to imply; DDAVP played a crucial role in her death."

Dr. Bohn seemed unwilling to discuss the technicalities ofJohn's point, and indeed the patience of both doctors appearedto be wearing thin. John became even more agitated; he thenwent into a long tangent that nearly brought the meeting to ahalt. "I launched into the physicians' care, which the coronerdoesn't care about. The coroner doesn't deal with that, so he'snot going to touch it." John simply could not accept that thecoroner's terms of reference would prevent him from dis-cussing 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 towhere I was almost up on the table," he told me.

Brenda reached over and took his arm. "You gotta calmdown" she told him. "I think they were getting defensive,"Brenda recalled, "and it was perceptible, in the body lan-guage and stuff. When people get upset, that bureaucraticwall goes up. They can't deal with your anger. It's easy towrite you off as irate, nonsensical, when you're angry."

Paul Harte decided it was time to intervene. "I felt that hewas letting his anger interfere with his objectives. Jumpingup and down and screaming at people is not going to get youan inquest. Fundamentally, one of the things one looks at,from a coroner's office, is 'How difficult is it going to be towork with this family?' So there is an aspect of trying to sellit to everybody."

Paul asked Jim Cairns for a time-out so that he couldspeak to his clients privately. Dr. Cairns suggested that heand Dr. Bohn would leave so that they could have the board-room to themselves. When they left the room, Paul turned toJohn and told him bluntly that whatever prospects stillremained for getting an inquest were now in serious jeop-ardy. 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 under-

stand 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 Brendabrought John to his senses. When Drs. Cairns and Bohnreturned, John was calmer than he'd been all morning. Hisemotions had gotten the better of him, but now he hadregained his composure. He'd lost sight of his mission, butnow he was back on track.

There was no doubt in Paul's mind or Brenda's, or evenJohn's, that the meeting thus far had not gone their way. Theodds were against them even before John's outbursts; Paulhad been warning John and Brenda for months that it wasgoing to be difficult, if not impossible, to get an inquest."The coroner has limited funds," he explained to me, "andsimply cannot hold an inquest into every death. So they haveto make what ultimately comes down, to a certain extent atleast, 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 doctormade a mistake; they're going to hold an inquest where asystem failed. Because a doctor making a mistake, their viewis, you go to the College, and the College takes whateveraction is appropriate."

As the meeting reconvened, Dr. Cairns opened with a con-

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ciliatory remark about the cause of death, suggesting thatperhaps they could reconsider the review's conclusion. A rel-atively civil discussion ensued, and shortly afterward the twodoctors and John reached an agreement on the phrasing:"cerebral edema causing brain stem dysfunction relating tohypotonic solutions in the presence of DDAVP." It was notthe 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 inline with what I understand it to be."

As everyone nodded quietly, John raised the only remain-ing unanswered question: What about the inquest? JimCairns did not say yes or no; rather, he began to explain thedifficulties, from a coroner's perspective. The purpose of aninquest, he explained, is to identify what went wrong and toensure that measures are taken to prevent its reoccurrence.The problem here, he said, was that the hospital had alreadytaken responsibility, and indeed it had put new measures inplace.

"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. Wouldthat get your attention?" The two doctors stared at him butsaid nothing. "Maybe you can help me out with the cause ofdeath 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, justafter the Hamilton Spectator ran its front-page article aboutthe hospital apologizing for Claire's death. This gentleman,John told them, had also lost a child, a teenage boy. His sonhad had the same problem as Claire and had died as a resultof post-operative complications that appeared to be virtuallyidentical to hers.

For Barry and Cindy Lasovich, the nightmare began oneSaturday afternoon in early July. Justin, whose parents wereseparated, was spending the weekend with his father, and thetwo of them had gone for an afternoon swim at the pool inWelland, near their hometown of Port Colborne. As Justinwas getting out of the water, Barry saw that somethinglooked wrong: It was a sunny day, but Justin's eyes were fullydilated.

"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 physicianreferred them to the hospital in St. Catharines, where Justinwould be able to see an eye specialist. They took him in thatevening, and, when the specialist advised a CT scan, theyreturned the next morning. The scan confirmed that Justin

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had a brain tumour. "And then everything just happened sofast," Barry told me. "It was from the doctor's to St.Catharines for a scan on the Saturday and from there toMcMaster. It was very, very devastating. Sometimes I stillwant to pinch myself and wake up from this dream. Unreal."

Justin was admitted to McMaster that afternoon; the nextday, with fluids continuing to build up in his skull, he under-went emergency surgery. "They had to put a shunt in torelieve the pressure," Barry explained. But on Sunday, Justinwas still experiencing difficulties. "He was looking at hishands funny," said Barry. "I said 'What's the matter?' and hesaid, '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 asClaire's (seven hours compared to eight and a half), but itwas more difficult. The surgeon estimated that about eightypercent of the tumour had been removed; nevertheless, he

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told Barry and Cindy that the prognosis was positive: Heexpected a full recovery. "On the Saturday after his surgery,"Barry said, "one of the surgeons came in, the one who wasgoing on holidays, and he told us that everything looks fine,that there's no problem. He said it's going to be a long, hardrecovery, but everything's going to be just fine."

One day after the surgery, Justin appeared to be recover-ing — he was alert, attentive, and starting to drink fluids onhis own — but on Sunday morning his condition deterio-rated sharply. By Monday, he wasn't verbal and didn'trespond to commands. He crashed early that afternoon. Hewas intubated and taken in for a CT scan. The scan appearedto the physicians to show a bleed on the left side of his brain.But it was not until seven the next morning that Barry andCindy were told, for the first time, of the true gravity of theirson's condition. At eight o'clock, Justin was taken to the OR,where the surgeons attempted, unsuccessfully, to relieve thepressure on his brain by removing the bone across the top ofhis skull. Justin continued to show "an absence of brain stemand cortical function." The only decision that remained, andthat rested with Barry and Cindy, concerned the removal ofJustin's life support.

Throughout this period, Justin's parents had been toldrepeatedly, by the doctors and the nurses, that he was "justfine." Their intuition had told them otherwise. "As soon astrouble started happening," Barry told me, "we had a gutfeeling there was something wrong." Their concerns wereignored. On one occasion, on Sunday afternoon, Barryalerted the nurse that Justin's body was twitching erratically

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(the event was later identified as a seizure); she told him thedoctors were "busy," but he demanded that someone attendto him immediately. The doctor took a brief look at Justinand told his parents that his movements were "a normal partof waking up."

This and other incidents were documented by Barry in anotepad, something that one of the surgeons had recom-mended to him prior to the surgery. "He said, 'Do yourself afavour and go out and buy yourself a little book and a penand make notes every day — what the weather's like outside,what's going on around you — and ask questions, make littlenotes.'"

As a matter of fact, when things started falling into place here, I

really kind of wondered, did somebody kind of suspect that some-

thing 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 comeracing back to his mind as he read about Claire Lewis."When they were in giving him all these needles all at onetime, my ex-wife piped up and said, 'What are you givinghim?' And this is where we wrote this name of this drug, thisDDAVP."

Justin was pronounced brain-dead on August 6th. At thattime, one of the surgeons told Barry and Cindy that someonefrom 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 theHamilton Spectator story of December 2.7th. "Jason — he's myother son, he's living with me — he came home one day witha 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 cmniopharyn-

gioma, 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 oneevening. "Are you the John Lewis that had a daughter thatpassed 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. "Itwas kind of like a silent thing there for a minute on thephone," Barry told me. "I don't think he could really believethat 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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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 offeredhis help, but he was shocked to hear about Justin's death, andbadly shaken by all the parallels with Claire's death.

Brenda reacted the same way. "Right after the phone con-versation 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 recordsimmediately; he e-mailed him a template for the necessaryrelease forms. Barry drove into Hamilton and put in therequest. "They got it back to him in about two weeks," Johnsaid. "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 himto go over them together.

The meeting, their first face-to-face encounter, was asintense as their first conversation on the phone. "Barrystrikes me as the kind of guy that hasn't cried very much,"John remarked, "but he sure did a lot of crying in that tele-phone call and subsequently being here, at the table, with hisoldest son. He was quite devastated."

Barry said the same thing about John's reaction whenJohn read the records. "He started going through them,"Barry told me, "and he just was devastated. He said, basi-cally, 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'sculpability. Despite Barry and Cindy's lack of medical back-ground, they had known instinctively that something waswrong and that they were not being informed truthfully.John recalled Barry's angry, tearful assertion as they sattogether over Justin's records: "He kept saying, 'I'm not adoctor, but I know something went wrong.' Over and over,he's saying, 'I know something went wrong.' Because Justinwas 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 recountedthe 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 heartto tell Barry. Hollenberg was the surgeon, he told them. Thesurgery 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 managementissues — notably what appeared to him to be the highlyquestionable use of DDAVP and an inexplicable, inexcusablelack of proper urine and blood monitoring. "In particular,"he told them, "and Dr. Bohn will be interested in this, theydropped this kid's sodium about nineteen millimoles in lessthan 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 blamedthe DDAVP for causing the boy to retain fluids at a time whenhe was already heavily overloaded, just as Claire had been.And once again, because of insufficient urine and bloodmonitoring, this child's sodium imbalance also went unde-tected until it was too late to rebalance it.

Jim Cairns, who'd been sitting in stunned disbelief, finallyspoke. "Are you sure about this, Mr. Lewis?"

"I'm absolutely positive. I would not make this up." Johnspoke clearly and quietly, and with the certainty of one whosees 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 recommenda-

tions 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 recom-

mendations? You can read them yourself"

There were seven recommendations listed in HamiltonHealth Science's letter to John and Brenda in April. Fourmonths later none of them was in place, and no fewer thansix of them had enormous implications concerning Justin'streatment.

"The patient's record (or a complete copy thereof) travelswith the patient between sites." Justin's records remainedat the General when he was transferred to the PICU atMcMaster.

"Education aimed at ensuring that icu staff understandand correctly respond to fluid balance, diabetes insipidusand other issues in the post-operative management ofneuro-surgical and other complex cases in the PICU." Even thoughthe use of DDAVP might have been appropriate at specificpoints during Justin's post-operative treatment, the protocoloutlining its precise use, precautions, and monitoringrequirements was not followed.

"It will be reinforced with staff to be word-perfect intranscribing orders." This will be discussed ". . . to ensurethat there will be wide understanding of the importance ofthis issue." A lengthy, detailed pre-operative note fromendocrinology was not followed, as it should have been, tothe letter.

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"AH staff are being reminded of the need to listen to thefamily and loved ones when they articulate concern regard-ing deterioration." Barry and Cindy's questions and pleas forfurther attention and action were repeatedly ignored.

"Regarding guidelines, briefing and education, particularemphasis is being placed on the emergency management ofthe deteriorating neurological patient." Even though Justinpresented with clear signs of seizure the day before hecrashed, his sodium level continued to be monitored inade-quately.

As John went down the list, the weight of the atmospherein the room was palpable. "That blindsided them," Brendatold me. "They weren't expecting that at all. I think Cairnswas shocked, and humiliated probably, that this death hadn'tbeen brought to his attention." On the other hand, Dr.Cairns was quick to regain his composure. "Once John toldhim, he wanted to know everything about this and was veryclear that this death hadn't been flagged. He was perturbedand 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 wouldbe called. Now there seemed little doubt. "They had nochoice but to do the inquest," John told me. "I knew I hadthem then; there was no question. For them not to do aninquest, 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 thatevening, about nine o'clock, Dr. Cairns called John at home.

"I'll give you the initials of a fifteen-year-old boy whodied in August of 2002," he told him, "and you can say yesor 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 ajudge on the line right now, I'm getting a crown warrant forall records — and I'm going tomorrow to seize them fromMcMaster and the General. And I'll be seeing AndyMcCallum to see what he knows about all this."

There was a long pause. Now it was John who was at aloss for words.

"One more thing," Dr. Cairns added. "I would ask you toplease not participate in this," he asked, "and to please leavethe press out of it until we have all the facts."

"Certainly," John answered. "I'm a man of my word, andI can understand."

"Mr. Lewis, you need to understand, I'm extremelyhumiliated and extremely embarrassed. I can't begin toexpress my severe disappointment and my anger with myRegional Coroner at the moment, and with the hospital, fornot bringing this to my attention."

The next morning Jim Cairns wrote a letter to Paul Harteconfirming that the Regional Coroner, David Eden, was no

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longer involved in the case and that he, personally, had takencharge of the investigation. He also called Barry Lasovich.He promised that Justin's case was going to be investigatedthoroughly and assured him that he would advise him of theresults as quickly as possible.

Six weeks later Dr. Cairns asked John and Brenda andBarry and Cindy to meet with him in his office; Paul Hartewas also invited. At the meeting, the first order of businesswas to explain the details surrounding Justin's death to Barryand Cindy. But Dr. Cairns said that he also wanted to tellboth families, in person, that he and his staff had determinedthat the circumstances in the deaths of both children war-ranted a public inquest. Because of the many similarities, hetold them, both cases would be investigated together, in adouble inquest. He said he would be holding a press confer-ence the next morning to announce it.

Both families were pleased and relieved to hear the deci-sion, but they reacted quite differently. For Barry and Cindy,this was the first time that they had been told officially thatJustin's death was preventable. That harsh acknowledgementalone, though it only confirmed what they had long sus-pected, came as a brutal shock. "It was a very down day,"Barry told me. "It was a workday, and I could not go backto work. From what they said up there, without any doubtin their minds, there was definitely a screw-up, in the hospi-tal, and they felt that he should have been still here with us."

Barry and Cindy were just beginning to feel the impact ofwhat was going to happen and to grasp its significance, butfor John and Brenda it had been a much longer ordeal. For

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them, this meeting, and this confirmation, represented theend of a sixteen-month battle. There was much more thathad to be done, and it would be much longer before thewhole truth would be fully and publicly revealed, but for themoment they could take some comfort in knowing that theyhad accomplished their goal.

That evening Paul Harte, who'd also been at the meeting,called John to offer his congratulations. "Savour it," he toldJohn. "Moments like this don't come very often."

Paul, who had cautioned John so many times not to gethis hopes up too soon, or too high, wanted to be the first totell him how special he thought his victory was. "It was nosmall accomplishment," Paul told me. "It takes a lot to callan inquest, particularly where the circumstances of her deathwere at that point well known. The odds were very muchagainst him." In fact, looking at John's prospects on thestrength of Claire's case alone, the odds were probably insur-mountable. It took a second death — and an unusual chainof events that led Barry Lasovich to call John — to turn thetide in John's favour. "It seems to me," Paul said, "thatthere's no doubt that, without the Lasovich case, he wouldn'thave gotten there. And how did he get the Lasovich case? Hegot the Lasovich case by being persistent with the media. Sofull credit to him on all those grounds."

From the broadest perspective, inquests are held for thebenefit of the public's interest, not for any individuals orfamilies. But there is another dimension to the process. Inpursuing their own larger objectives — the safety of thepublic, for example — inquests can also shed light on facts

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that might not otherwise be exposed. "Look at any of thesebig public inquests," said Paul. "There may be a policyreason to have the inquest — they're brought because thecoroner believes that some genuine good can come out of it— but, at the end of the day, the only way to get there is topursue what some people would think of as a witch hunt. Inorder to corne up with a solution, you have to truly under-stand the problem. And you have to understand it from theground up."

That, John told me, was the part he and Brenda werelooking forward to: watching the faces of the nurses anddoctors involved in Claire's care as they tell their versions,under oath, of what happened. Yet he maintains that hismotive had nothing to do with witch hunts. It was alwaysabout truth and accountability. He didn't go after individu-als until he was forced to. He didn't willingly drive himselfhalf mad with anger and torment and obsession. He didn'tbecome a warrior by choice but by necessity. Had peoplebeen open and honest, and taken responsibility for theiractions at the outset, it never would have come this far. That,he told me, his head hung low, his voice barely audible, is atragedy in itself.

Just a few weeks earlier John was quoted in the NationalPost on this very point. In February 2003, a medical erroroccurred 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, hetold the Post, would have made all the difference. "I've beentalking to parents across the country and hearing the samethings over and over. We want acknowledgement and wewant an apology. We don't want physicians' licenses, wedon't want nurses' registration, we don't want hospitalsshutting down."

It was one of the recurring themes in so much of John'swriting and in so many of our discussions. "It's about takingresponsibility for your actions and reactions," he told me,"and being accountable — to the family, the hospital, theCollege, 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 deathuntil the inquest was called. It would take another six-

teen months — perhaps longer — before it would actuallytake place. The inquest was announced on April uth, 2003,at a press conference held by Jim Cairns. It was originallyscheduled for "later in the fall," but John was later informedby Dr. Cairns that it wouldn't likely happen until the winterof 2,004. But that season, and then another spring, came andwent 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. Cairnsapologized profusely for all the delays, citing a number ofreasons for them: The complexity of the cases and the result-ing substantial preparation required; an unusually highnumber of other investigations (including, as one majorexample, Toronto's SARS epidemic); and the fact that he him-self was leading the investigation while at the same timeoverseeing 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 August2004, the date for the inquest had still not been set.)

The delays added yet another source of continuous strainon both families. "We just want to get this inquest done andover with," Barry Lasovich told me, "so we can get on withour 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 wayJohn did so often during our talks. "I don't know," he mut-tered under his breath. "There's some days I just feel liketaking the law into my hands and going down there andstraightening a few people out." He sighed again, pausingmomentarily. "But I know that's not the right thing to do."

John and Brenda were no less frustrated by the delays, butthere were many times during these latest months of waitingthat they were consumed by the events around them. Theinquest often felt like just another blip on their overcrowdedradar screen.

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A month before their meeting with Jim Cairns, on Marchxoth, John heard from the College of Physicians and Surgeonsof Ontario (CPSO); the Complaints Committee had finishedits review of John's complaints against the doctors and resi-dents, copies of which were attached to the letter. Thetwenty-four-page review was succinct but thorough. It wasbalanced in its consideration and assessment of the state-ments submitted by both parties (the two doctors and fourresidents on one side, John on the other), but, to John's sur-prise, 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 inap-propriate actions and inactions, particularly, the committeenoted, "regarding the management of a patient followingresection of a craniopharyngioma, including the diagnosis ofdiabetes insipidus and its treatment, and the proper moni-toring and management of fluids/electrolytes." But thecommittee also acknowledged that "this lack of knowledgeis not unexpected, given their role as trainees in a learningenvironment," and placed responsibility for dealing withsuch shortcomings squarely on the shoulders of their super-visor, the attending physician: "It would be expected thatany lack of knowledge on the part of these residents wouldbe identified and addressed by appropriate supervision onthe part of the attending physician. Sadly, however, this didnot occur in Claire's case." The attending physician washarshly criticized for failing "to meet his obligation to ade-quately supervise the care that was provided by hisresidents." The review reiterated his "overall responsibility

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for the adequacy of the care" that was provided to Claire. Itconcluded that the attending also "failed to avail himself ofthe specialized knowledge and support available from theendocrinologists."

On the other hand, the review was equally critical of thechief endocrinologist for his failure to adequately supervisehis two residents and to provide follow-up support. "TheCommittee is of the view that [he] should have taken a moreactive role in the management of Claire's case. . . . It shouldhave been apparent... that [the attending physician] and hisresidents were experiencing difficulty adequately managingClaire's fluids/electrolytes, and that further involvement onhis part was required to ensure that a proper balance wasachieved."

Concerning all four of the residents, the committee'sdecision was to instruct the College to communicate withtheir respective program directors "to ensure that they con-duct a full discussion of this case, and address anyknowledge or skill shortfall in their educational program."The decisions taken against their supervisors were moreserious. 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 dia-betes insipidus in post-operative craniopharyngioma; thesupervision of multiple care-givers in complex and uncom-mon situations where knowledge cannot be assumed; andthe supervision of residents in a tertiary academic criticalcare setting." In the case of the endocrinologist, the caution

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would address "the adequacy of post-operative endocrinol-ogy orders, particularly in a complex case where theknowledge of attending physicians cannot be assumed, andthe adequacy of his follow-up post-operative care."

A month after the CPSO review was completed, John's CNOappeal came up. A hearing was convened by the HealthProfessions Appeal Board, where his complaint againstClaire's attending nurse went before a three-person tribunal.John and Brenda attended the hearing, which took place onApril 9th, just one day before they met at Jim Cairns's officeand were informed of the inquest.

John's submission, which he presented to the panel withPaul Harte, contended, first, that the CNO investigation wasseriously flawed. Despite John and Brenda's obvious insightson what happened to Claire on the day she crashed, neitherparent was interviewed, or even contacted, by CNO investiga-tors. "That was our opening point," John said, "and the threepanel members just went 'Pardon?' They're all furiously writ-ing away, with that bored bureaucratic look, and . . . snap.Up go the heads — looking at me over their glasses, lookingover at the nurse's counsel, looking at the College of Nursesrep sitting at the back of the room. . . . 'You weren't inter-viewed?' I said, 'No.'"

John's second point concerned the attending nurse's eva-sive comments about when — or if — she had alerted thephysicians on Sunday afternoon, when Claire's condition

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was worsening. The College's investigation, John felt, hadnot pressed enough to get a definitive answer. "They askedher, 'What time did you call a doctor?' 'Well, the first time Isaw the doctor was at about 8:30 in the morning at rounds.''No, when did you call the doctor?' And she wouldn'tanswer. She kept ducking around it, and her lawyer helpedher duck it a couple of times. So they just threw their handsup and quit asking her and said, 'Fine, we'll move on.'"

John was certain he already knew the answer. "There wasno evidence of any physician being contacted. There's nodocumentation, there's no pages in the paging records, whichI have." His records also included statements from both theattending physician and his resident, which had been sub-mitted to the CPSO. "The physicians both said no one calledus. 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 herespond? Conversely, if one of the physicians wasn't called,why not? The CNO hearing failed to provide them. "TheCollege's decision was so biased," John said. "It was unbe-lievable. I was just stunned when I read the originaldecision."

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 wasvalid Almost eight months later, John received a letterinforming him that the Appeals Board had overturned theCollege's decision. This in itself, he told me, was somethingof a victory. "It's been sent back to the College, which isreally, really profound. It doesn't happen." Then, in March2004, he got the results of the second investigation. It cameas another form letter and another big disappointment. "Theoriginal decision of the Complaints Committee was to issuethe member a letter of caution." Its second decision was toissue to the nurse "a reminder ... concerning your complaintabout her nursing practice."

John's only remaining course of action would be theinquest, which, he expected, would explicitly address thequestions regarding the nurse's actions, "I've given her anopportunity to come clean with us, a couple of times," Johnsaid. "She wanted to meet with us, and I said, 'No, first weneed to talk about when you called the physician.' And shejust won't budge on it."

The Claire Lewis-Justin Lasovich inquest was front-pagenews on April nth, 2,003, but it wasn't until several weekslater that the full story behind it — Barry calling John, John

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confronting Jim Cairns — was brought to light. On Mayioth, the Spectator ran two stories. The first — "Benign BrainTumour Surgery Halted" — was a front-page reportannouncing that Hamilton Health Sciences had placed amoratorium on craniopharyngioma surgeries "at least untilit receives the results of a review being conducted by exter-nal experts." According to Jim Cairns, the action was"volunteered, and that was entirely the appropriate thing todo." The second story was an in-depth feature on the eventsleading up to Justin's death and the subsequent dealingsbetween Barry and John that solidified the case for holdingan inquest.

Three days later the Spectator ran another front-pagestory — "Hospital's Top Doctor Never Told of Boy's Death"— in which Dr. Andrew McCallum described how he heardabout Justin's death from Jim Cairns. "I think it would befair to say I was very surprised and very concerned,"McCallum said. In fact, Andy McCallum, together withMargaret Keatings and other senior HHSC staff, were stillreeling from the aftershock.

An internal investigation of Justin's case had beenlaunched immediately. HHSC also organized a larger, broaderreview that was undertaken by an external task force. "Wehad 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 comprehensivereview 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 alongsideAndy McCallum and Susan Smith compiling the new data."Now we have pages of recommendations — our earlierreview of Claire's care; our second review, of Justin's; theexternal review of the icu; plus the family's recommenda-tions." The family recommendations Margaret referred tohad come from none other than John Lewis. He had beenworking on them over a period of several months; he wrotehis first draft in April. He was prompted to submit them toHHSC in part because he was impressed with senior manage-ment's genuine efforts to "get it right this time." He was alsoencouraged by Paul Harte to take this direction — "the highroad" — and to work proactively, within the system. In oneof John's periodic phases of cynicism and despair, Paul hadconfronted him about the choices that lay before him. "Tellme 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, youneed to work with people, not against them." Paul had toldhim it was important, too, for his own sanity, his own peaceof mind, to remember that not a single individual involved inClaire's care, and certainly none of the hospital's administra-tors, 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 makea difference — or you can stay angry for the rest of yourlife." The conversation reminded John of an encounter somemonths 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 proba-

bly 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, eachof which included a detailed rationale. When he finished hisdraft, he sent it to Philip Hebert and asked for his feedback.Philip was pleased not only with the document but also tosee John taking such a positive initiative. Since the time theyfirst met, Dr. Hebert had tried to encourage him along muchthe same lines as Paul Harte — to find something construc-tive to take from this tragedy. "He was so angry and sodiscouraged before," Philip said, "so pessimistic aboutthings changing. I was quite surprised to see that he was will-ing to work with the profession on taking this forward.Although, in another way, I was not surprised, because I feltat some point he would want to do something." Dr. Hebertmade 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 educationalcomponent, and I was very pleased to see that, because Ithink, when patients are seriously harmed, that harm is madeworse 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 itfrom the perspective of a parent and a nurse, his recommen-dations ran the full gamut — educational in-servicesfollowing an adverse event, ongoing training to keep staffabreast of the latest products, techniques, and safety-relatedmatters. As both a student and a teacher, John knew theimportance — and the formidable challenges — of creatingand 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 recom-mendations with Margaret Keatings, and instead of sendingan e-mail he phoned her. After nearly a year of correspon-dence, it was time, he felt, for Brenda and him to meet inperson with Margaret and Andy McCallum. His call wasalso prompted by the fact that he'd heard from Paul Hartethat Dr. McCallum was about to leave HHSC to take up anew posting in Kingston, Ontario. John was hoping theycould meet before he left.

Margaret was delighted and slightly overwhelmed to hearfrom 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 ofrecommendations, which he left with them, but they hardlytalked about them at all. More than anything else, John andBrenda needed Andy and Margaret to hear from them, faceto face, about what this ordeal had been like for them. The

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agonizing hours leading up to Claire's death. Arranging forher funeral. Dressing her. Cremating her. John and Brendatook turns, sharing their experiences, their pain, from thatawful weekend in October 2.001, through the months of thehospital's silence and inaction, to the debacle of their meet-ing at the hospital a year and a half earlier, to the letter ofapology, to the inquest. "It was very emotional," MargaretKeatings told me. "We cried. It was very cathartic. It waskind of sad. It was emotional, it was sad, but yet it was likethis big weight had been lifted."

The meeting had the same effect on John and Brenda. Itfelt like another wall had been broken down; it was liberat-ing for them, not merely to discuss the case, or the hospital'sprogress, but simply to express their feelings. And just as ithad 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 mean-ingful and more powerful — than any letter.

More such meetings were to follow. Not long afterward,John agreed to meet with Nancy Fram, Director of CriticalCare Nursing. She also cried through the entire meeting. She,too, apologized for what had happened in the hospital-parent meeting in February 2002,. She thanked John for theopportunity to see him and to be able to tell him face to facenot only how much she regretted her actions, and those ofher colleagues, but also how much the incident had changedher. She was a different person, she told him — a betterperson. 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 theyagreed to the meeting, he drove in from Montreal to seethem. He apologized. He admitted that it was wrong of himnot to have checked in on Claire much earlier, and muchmore often, than he had. He told them that he had relivedthose hours, and those mistakes, a thousand times over. He,too, had children, four young children, and he said he couldnot imagine the pain that this had caused them. He was sosorry, 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 Scienceswere so positive. At Barry Lasovich's request, John hadattended a meeting at HHSC in August 2003, essentially to setthe stage for Barry and Cindy's civil suit. The hospital's rep-resentatives were still not prepared to acknowledge theirculpability for Justin's death; despite the parallels, his casewas much more complex than Claire's, and it was far fromevident who bore responsibility to what extent.

Cindy Lasovich did not understand the lawyer talk, butshe knew exactly what she wanted. "This can't happenagain," she told the room. "I will do whatever I can to makesure this never happens again." Her remarks, John told me,set the tone for the rest of the meeting. It was far differentfrom what he and Brenda had experienced. Even as thelawyers set out their respective positions, John could sense adifferent 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 bedefending his client at any cost, seemed to feel the sameway." The Lasoviches did not come away from that meetingwith anything resembling an outright admission of responsi-bility from the hospital, but as John pointed out there wasdialogue, and everyone was working together. "That alone,I'd say that's progress."

Paul Harte called the same week to discuss the details of asettlement on the civil lawsuit. John and Brenda signed offon the agreement on August 4th, 2003. This marked the suc-cessful conclusion of one more battle, but like many of theothers this one, too, was a hollow victory. "The civil suit justleft us sad," John said. "Just totally sad. You sign all thesereleases, and they all say over and over again — the physi-cians, the nurses, no one did anything wrong. There's nosatisfaction in a civil suit. It left us just sad."

John had remained in contact with both Donna and JackDavis and Chris and Susan Atkinson. Much of their dialoguewas about providing mutual support, but when these fami-lies' cases began to falter John did what he could to help.

The Davises hadn't been able to find a lawyer with theexperience or resources to advance their case in Saskatche-wan. 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 pre-liminary 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 dol-lars in damages in a wrongful death case involving a child.The harsh reality, Paul explained, is that the courts base theirdecisions almost entirely on legal precedent. "These thingsare not written by legislatures," he explained. "Damages aredecided on the cases that were decided before." Paul knewthat it would cost the family far more to prepare their casethan they could ever hope to recover. "I'm still of the viewthat there's no doubt that nurses provided substandard carein 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 theirson's death."

The Davises were devastated by this latest in a long seriesof setbacks. "The money wasn't an issue," Donna told me."We don't want a penny, but on the other hand we can'tafford $150 or $200,000. And that makes us feel very unwor-thy. Like how could we say that our son isn't worth that? Heis." 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 saidthere is obvious negligence. And yet we can do nothing."

Chris and Susan Atkinson did get their inquest, in the fallof 2003. They had a very good lawyer, and he had preparedan 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 bythe drugs nor by the care she had received but by the alreadydeteriorating state of her health. Here again a proceduralissue became a major factor in the jury's decision. The courtsystem in New Brunswick, unlike those in most otherprovinces, does not allow cross-examination of witnesses; thetestimony of one of the hospital's expert witnesses, which washighly questionable, therefore went unchallenged. "Becausethere's no cross-examination out in New Brunswick," PaulHarte explained, "the jury decided that the drug didn't causetheir kid's death — even though three experts said it did. Thejury chose, essentially, to accept the opinions of the treatingphysicians over the experts. It was peculiar."

Chris and Susan were stunned and enraged by the out-come. Their only recourse was to pursue a civil lawsuit, butnow they faced a new quandary — how to pay the substan-tial legal fees they'd already incurred. "Our lawyer was veryconfident through the inquest that when it was over it wouldgive us the leverage to sit down and work out a settlement.But because of what came out from the verdict, that basicallysquashed that idea."

Once again the community rallied behind the family. "Ican't say enough about this community and this area, St. Johnand Hampton," Susan effuses. "There were people that putposters up from as far as St. John to Sussex to try and helpget some money together and help us with our financialplight. There was some money that was raised — that helpeda little bit, but we ended up refinancing our home and stufflike 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'sstatute of limitations required that Chris and Susan had tofile the civil suit within two years of Ashley's death. "Wewere going to run out of time," Susan said. "Our lawyerbelieved in our case, but we didn't have the money to fight— and he didn't have the money to finance it. So we werestuck." Just two weeks before their limitation, in February1003, Chris was talking to John. "It looks like this is it forus," 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 furtherfor 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. Withany luck, Susan told me, the family will be able to recover allthe money this ordeal has cost them — and in some wayrepay the people across the province who helped them out."We're hoping that everything does end up going our way, sothat we can take some of it and give a little bit back to thecommunity."

Over the course of the winter of 2003-04, John did a fairamount of freelance work for Paul Harte's firm, researchingmedical charts for some of his other cases. Then in June hewas hired on a term contract as a research consultant for theToronto-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 alsoentailed reviewing medical charts and organizing the data foruse in ICES research projects. The downside — extensivetravelling across the province, working in hospitals again —was physically and emotionally strenuous. John also beganto think about forming his own consulting business, doingsimilar projects for other lawyers and institutions.Throughout this time, he had remained in contact with otherfamilies he'd encountered, taking on the unofficial (andunpaid) role of family advocate.

In short, John was not only a busy man, but he wasoverextending himself, not only with Claire's case but withthose of other families and, because of the nature of his free-lance research work, with an ongoing stream of other cases.The strains on his marriage were intensifying. His relation-ship with Jesse was suffering. As the summer progressed, itall began catching up with him. In the midst of this, Johntook it upon himself to initiate another fund-raising projectfor Revolution Hope. It was too much. It pushed him overthe top.

In March of that year, the group had held its first fund-raiser, a combined dance benefit and silent auction. It was ahuge success, attracting over five hundred people and gener-ating more than seven thousand dollars. This event wasinitiated and sponsored by a friend of Brenda's, BeverleyCayton-Tang, who operates DanceScape, a ballroom dancestudio in Burlington, with her husband, Robert. The workrequired in organizing and managing the event was sharedby all members of the group, but Brenda found herself doing

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much more than she should have. When John suggesteddoing another event — selling gift cards and soliciting dona-tions at Hamilton's annual community fair, Festival ofFriends — she wanted no part of it. "I just felt burnt out,"she explained. "I felt like I needed a break from RevolutionHope for a while."

There was another, more pressing reason for Brenda'sreluctance. "At that time, we also started having a lot ofproblems with Jesse, so I just wasn't keen to get quicklyinvolved in another project. I don't know how much effectthis had on Jesse. I mean, we're not only spending time griev-ing for Claire but focusing on this whole benefit for Claireand 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, noth-

ing. 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 withJesse, John proceeded on his own. "John went to two meet-ings that I didn't go to," Brenda explained, "and he wasupset that I wasn't going and didn't really understand that Iwanted to take a break from it." Most members of the groupwere 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, hetook on more and more of the responsibilities. Together withall the other things he was doing, it proved to be more thanhe could handle. By the time the festival happened, onFriday, August 8th, John was a walking time bomb, an acci-dent waiting to happen.

Merchandise sales and donations were disappointinglylow, and far short of John's expectations. The event was adisaster, 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, butI think what happened at the same time was John was incrisis, Jesse was in crisis, our family was in crisis — andthat'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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After another of his long hiking jaunts, John once againended up at the door of St. Joseph's emergency ward. Thistime it was more serious. This time, he told the nurse, hefeared for his life. This time he was admitted. "I actually endedup in a psychiatric ward for a week — ended up in there, notas an outpatient, I was an in-patient. I think that was the pricefor doing all that stuff, and I think it all came to a head — herdeath, the advocacy, the inquest, the lawsuit, the marriage, thefamily, everything. Everything just imploded, in a big way. Igot into the hospital, I think for my own safety. I had enoughinsight 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 mar-

riage 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 quiteupset and angry with him," she said, "but I think he feltreally remorseful and really bad, and he wanted to comehome 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 hewas going to lose me, too, and then there really wouldn't beanybody,"

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 wasnot at risk. Suicide was not an issue in this case, but he toldJohn it was clear that he was in a state of deep depression.He immediately began to look for the right medication — adifficult process, as anyone who has experienced it, eitherpersonally or through someone close, can attest. Many drugsexacerbate the anxiety. Many have side effects that seemworse than the illness itself. Until the right drug, or combi-nation of drugs, is found, and until the right dosage isestablished, the experience can be frustrating, disorienting,and at times harrowing.

The next step, adjusting to the medication, can be just asdifficult. John was stabilized within a couple of days, and bythe end of the week his condition had improved to the pointthat he could return home, but his adjustment period was justbeginning. "Things got strange," Brenda said. "He was tryingto adjust to this medication and was suffering really seriousside effects." His behaviour was erratic and unpredictable.

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One day he would seem calm and relaxed; the next he mightsuddenly revert to his anger. His thoughts, as Brenda quicklyrealized, 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 emotionalstate only seemed to worsen. "They stabilized him in thesense that he wasn't getting paranoid, and wasn't suicidal,but he wasn't anything. They were really awful drugs. It waslike 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 omi-nous, oppressive weight of John's anger and sorrow and,now, inertia. "He was more and more remote, and more andmore withdrawn, and I got to the point that I hated beingwith 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 becameresentful. "He was angry with me, too," she explained,"because I was trying to start to do stuff, and he wasn'tready to do anything. He didn't want to see people. Hewanted to be home all the time and sort of withdraw intothis house — and not go anywhere and not do anything."

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Brenda became involved with spiritualism. When shebegan to meet with psychics and spiritual mediums, Johntold her he was concerned about her state of mind. Brendawas 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 ofcontrol. After finishing grade nine with her lowest gradesever, Jesse careened her way through a long, tumultuoussummer. "She'd gone crazy that summer," an exasperatedBrenda told me.

The summer was her going out and not coming home, or me get-

ting 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 anultimatum: play by our rules, or go live somewhere else. Jessechose to go her own way. By now, she was seeing very littleof her old friends; she'd taken up with another girl, who wastwo years older and far more experienced at living on thestreet. As John and Brenda saw less and less of their daugh-ter, their fears for her safety and well-being grew. "It madeus feel like we were going from the parents of two childrento 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 ofpatience 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," shetold me, "grown-ups, almost my parents' age, in one-bed-room apartments, on welfare. And I didn't want to end uplike 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 diedunexpectedly. It was another sad, painful day for everyone,but for Jesse, who'd been very close to her grandmother, thetragedy also seemed to provide another warning sign,another wake-up call, and it brought her to her senses. "Itwas a turning point," Brenda told me.

Actually, as Jesse explained, although it was the beginningof her turnaround, it did not happen all that quickly or quiteso easily. "I got home, and we tried turning things around. Itdidn't work the first time, but I didn't get kicked out. We justfought a lot, and then the second time it worked."

It took longer for John to come around, so much so thatBrenda questioned if he ever would. "I was beginning towonder if it was the drugs or if a part of him was just realgone and not coming back. That maybe it was part of himthat was lost and that we'd also lost whatever it was betweenus. I didn't know what to do."

John had been in an almost constant state of lethargy andinactivity through the fall and most of the winter. He, too,was becoming anxious to stop taking his meds. "He told thepsychiatrist at least three times he wanted off these drugs,"Brenda said, "and the psychiatrist kept saying no. He wantedhim 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 endof 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 tolook and act like himself again. In early May, Brenda told meshe was finally starting to feel optimistic about theirprospects. "The difference in him," said Brenda, "and thedifference in our relationship, in the last six to eight weeks,is remarkable. And finally, after all this time, I have a littlebit of hope again, that we are going to be okay."

John took a philosophical view of his breakdown. He saw itas something inevitable; something drastic had to happen,something had to give. He acknowledged the need for med-ical support, but he attributes his survival to somethingdeeper. "Silence," he told me. "A lot of silence. I needed myown time to grieve and feel that silence she left. How quiether piano is, how quiet this house is —- her voice not here,and her not here — just experiencing that. Being homeduring 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 tur-bulence of his life, but even then, despite the hazy distortionof the drugs, he began to sense the clarity that comes withfinally slowing down, finally stopping. He recognized, fromthe 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. Aweek after leaving the hospital, he wrote a new entry in hisjournal, something he hadn't done in several months. Itbegan bleakly, like so much of his earlier writing; hedespaired 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, andhope. But suddenly the writing changed. He turned awayfrom torments past and present, and instead, for the firsttime in at least two years, he looked ahead.

So, what's the answer to all this? Just how does one go about rein-

vesting 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, ever-

present 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 still-

ness 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 obses-

sion 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 havebegun, but the grieving, and the pain, have not stopped.Brenda tells me it never will. "I think a lot of people's per-ception 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 dothey want to. They will endure the pain of mourning, but sotoo will they feel the love that comes with remembering her.Not many others understand this. This is why the family needseach other. This is another of the reasons they want their storytold. "There's people who won't go around that area," Jessetold me. "They'll just be like, 'Oh, we can't talk about that, wedon't want to make her sad.' It kind of bothers me. It feels likethey're trying to forget her, and like I'm trying to rememberher. 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. Sheis gone, but she is here; her presence is with them always.This is the part that each of them, together and in their ownvery 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 dis-tressed mother of a young girl who had just died in theemergency ward at McMaster Hospital. She told John sheknew about him through all the newspaper articles aboutClaire. "It was a story that really struck her," he explained.

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"Then, when her daughter died, unexpectedly — it shouldn'thave happened — she called me up and said, 'What do wedo now?"3

There was a meeting coming up with hospital officials, thewoman told John, and she asked if he would accompany herand her husband. Of course he would, he told her. Althoughhe was in the midst of his recovery, and still under heavy med-ication, he agreed without a second thought.

John reviewed the child's chart prior to the meeting andcame fully prepared to argue her parents' case. What he didnot 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'tbelieve his ears. "They immediately opened with 'There arethings we could have done better,'" John said. "The Directorof Children's Care listed a couple of the mistakes, then hehanded it over to the Director of Emergency Services, and hewent point by point down the chart. He said, 'We shouldhave done this, we should have done this, we shouldn't havedone this.'"

John was stunned by their candour and openness. Thediscussion could not have been more different from the dis-astrous meeting he and Brenda had attended two yearsearlier. John was in for another surprise. One of the physi-cians in the meeting was Dr. Charles Malcolmson, whomJohn remembered from that former meeting. "Correct me ifI'm wrong," John had said to him repeatedly — challenginghim, taunting him — but Dr. Malcolmson hadn't said aword. 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. "Ijust want you to know," Dr. Malcolmson told him, "this isan entirely different hospital. I barely recognize it. It's anentirely different place — and it's all because of you." Johnthanked him, and the two men shook hands. John wasdeeply moved.

Afterward John sat in the lobby with the young couple totalk about the meeting. "They were wanting my impressionsof it," John said. He told them his overall conclusion wasthat the hospital had already done almost everything hewould have expected. "They really did a good job," Johnexplained. "They didn't fire a doctor over this — that's notgoing to happen — but they talked to the doctor, talked tothe nurses, they've got some new protocols in place and somenew standards coming into the emerg. That's good stuff tohear. And the chart review was impeccable."

They spoke briefly about next steps, including whetherthe couple should pursue a civil action. John offered to meetwith 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 tobe for them.

John called Margaret Keatings to tell her about the meeting.She was pleased to hear that it had gone so well — and espe-cially to hear it coming from John Lewis. It reaffirmed to her

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that this time their efforts really were producing tangibleresults; this time they really were getting it right. "It's thewhole philosophy," she told me. "It's the culture. There'sabsolutely no question that we owe it to patients and fami-lies 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 envi-

ronment. It's the caring. It's more humanistic. It's more

accountable.

Margaret also agreed with Dr. Malcolmson's commentthat John deserved a great deal of the credit for the hospital'stransformation. "I think where John has made the differ-ence," she told me, "was making us so acutely aware of thepain that families experience. Not only in their situation,because their child died, but this whole seeming lack ofaccountability in the system and the failure to acknowledgethat she died and she shouldn't have died. And the view thatwe're supposed to be caregivers, and care extends beyond thehospital experience." John had made a difference in her life,personally and professionally, she told me, and she believesthat many others can learn from him too.

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BEWARE THE;: GRIEVING WARRIOR

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 con-

ference 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 advo-cate, a critic, an activist — is very much open to question. Hecontinues to work as a research consultant, and he hasstarted his own consulting company, but what happensbeyond this he cannot say, When I ask him what he thinksthe future holds in store, there is a long pause. Then hebegins to talk once again about his journey in the desert. Hasthe journey really ended yet? Has he found what he needsbefore he is able to return? He does not think he has.

The analogy of his journey into the desert, "that desolateemotional place I've been before," stems from a series oflengthy 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 rootsyears ago," John told him, "and I worked hard at it. Pleasedon't bring them into these conversations and screw this up."

The chaplain laughed,. "No problem. I'll leave myChristian roots at the door, and we'll just talk as humanbeings."

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FAR FROM OVER

The parables provided the two men with a metaphoricalframework, a point of departure, for discussing what wasultimately John's journey toward inner healing and inner dis-covery. "There's a repetitive image in the Old Testament,even the New Testament," he explains. "It might have beenthe real desert, or it may have been an emotional desert.Jesus had the forty days and forty nights. Moses goes intothe desert, Isaiah goes into the desert — everybody, at somepoint, 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 proba-

bly 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 con-

cerned 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 wouldwant to talk about the issues, the enormous change that wasstill needed — political, legal, cultural, societal, systemic,individual. I decided not to push the point. It struck me thatperhaps the choice isn't his to make. Perhaps it will comefrom someone else, a complete stranger, a messenger bearingtidings from back here, in what we call the civilized world.

I remembered John telling me about a woman who cameup to him in a supermarket. "Are you John Lewis?" sheasked.

"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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FAR FROM OVER

followed all the stories about your daughter and your familyand the hospital and everything, and I just want to say thankyou for everything you've done." Now she was crying. "Youkeep going," she said. "You keep doing what you're doing."

John started to cry too, and he thanked her for her kind-ness. The two of them stood together for just the briefest ofmoments, and then she disappeared back into the crowd.

Perhaps it will take something like that, I thought, tobring John back. I hoped it would. I hoped it wouldn't haveto be another phone call, from another heartbroken parent.Another death.

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n August 2,004, John and Brenda accepted an invitationfrom Margaret Keatings to meet again with her, Nancy

Frarn, and Dr. Peter Steer, from McMaster Children'sHospital. The final draft of the hospital's patient safety rec-ommendations had just been completed, and Margaretwanted the Lewises to be among the first to see it.

The report was overwhelming in its size and scope, but itwas its content — the actions that had taken place, the newpolicies and programs — and above all its spirit, its under-lying sense of conviction, that brought John and Brenda tothe verge of tears. Each of John's nineteen recommendations,without exception, had been adopted almost verbatim andincorporated into the study's five core areas: family-centredcare; patient safety; clinical practice standards; developmentof a separate, dedicated pediatric icu (PICU); and a strongfocus on patient safety and family-centred care withinall human resources orientation, training, and education

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programs. Several of the report's recommendations relateddirectly to Claire's case, and to Justin Lasovich's case, and tothe subsequent experiences of both families.

No children would be moved without their recordsaccompanying them. All pediatric neurosurgery would beperformed (pending installation of new equipment) atMcMaster, so that no child would need to be transferred post-surgery from another facility. PICU staff would at all timesremain under the supervision of a specialized pediatric inten-sivist, four of which had been hired; a pediatric emergencyphysician had also been recruited. Junior and inexperiencedresidents would be supervised by an intensivist during the dayand by a qualified critical care medical assistant during thenight. The ratio of nurses to patients was reduced to 1:1.

A new DDAVP monograph was implemented, together witha new protocol and guidelines for post-operative manage-ment of craniopharyngioma excision. Furthermore, a newprocess was implemented for debriefing all complex anddifficult cases, thus assuring that icu staff are fully informedand prepared. All nursing staff completed self-assessmentlearning modules on nursing standards regarding medicationadministration and documentation. Nursing staff also parti-cipated in a four-hour education session on fluid andelectrolyte balance for post-op neurological patients. Stringentrecord management practices were implemented to ensureconsistent briefing and monitoring (drugs, equipment, infu-sion schedules, and much more) as well as effective transfer ofaccountability during patient transfers and shift-to-shiftreporting.

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POSTSCRIPT

As part of their training and orientation, nurses and otherstaff are advised never to discourage parents from stayingwith their children; in fact, facilities were put in place toaccommodate family members for extended visits andovernight stays. Orientation for new employees includesinformation modules that stress the importance of commu-nicating with families and respecting their concerns.

A patient safety committee was formed, chaired by theCEO, together with three subcommittees: clinical patientsafety, medication safety, and equipment safety. HHSC'S riskmanagement program was reviewed independently with aview to assessing, among other things, the need for separat-ing risk management and patient services. A newdisclosure-of-harm policy was implemented, together with anew system for managing incident occurrences reported bypatients and visitors — once again emphasizing the need forstaff to listen to patients arid families. HHSC hired a full-timeclinical ethicist and planned to recruit in the fall of 2004 afull-time patient-family advocate.

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S J f — < . ^ ! ' / • ' n , ~ r

The Claire Lewis FoundationAn Invitation to Readers

For those individuals or their employers wishing to make adonation or otherwise support the cause, John and BrendaLewis wish to advise you that Revolution Hope is alive andwell.

As discussed in this book, all activities and plans were puton hold in the summer of 2003 because of the circumstancesin which John and Brenda found themselves; however, theLewis family and most of Revolution Hope's supportersremain committed to its vision of bringing the arts to under-privileged children.

After just two local fund-raising events, the group col-lected nearly ten thousand dollars. This money is currentlybeing managed by the Hamilton Community Foundation(HCF), one of Canada's largest and oldest community foun-dations. Established in 1954, the Foundation today managesover 250 funds, with combined assets of over $84 million. In2002, investment income generated from these fundsresulted in the distribution of almost $4 million in grants.

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HCF normally charges a fixed management fee of two per-cent of monies accrued. All remaining funds raised will beinvested directly in Revolution Hope's trust fund. In keepingwith HCF practice, distribution of grants from RevolutionHope may commence once the fund has accumulated a min-imum of $25,000. Revolution Hope's original goal was tobuild a permanent endowment fund of $i million and to usethe annual interest accrued on this amount to fund arts proj-ects 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 Foundation100 King Street West, Suite 400Hamilton, Ontario, L8p IAZTelephone: 905-52,3-56oo/E-mail: [email protected] visit the HCF web site: www.hcf.on.ca

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www.revolutionhope.com

www.hcf.on.ca

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