In­side Scott’s Mind

Through his ground­break­ing work with veg­e­ta­tive-state pa­tients, neu­ro­sci­en­tist Adrian Owen ex­plores the se­crets we carry within us

Reader's Digest (Canada) - - Contents - FROM INTO THE GRAY ZONE IL­LUS­TRA­TIONS BY BY­RON EGGENSCHWILER

Through his ground­break­ing work with veg­e­ta­tive-state pa­tients, Dr. Adrian Owen ex­plores the se­crets within us. FROM INTO THE GRAY ZONE

On De­cem­ber 20, 1999, a young man pulled away in his car from his grand­fa­ther’s house in Sarnia, Ont., with his girl­friend in the pas­sen­ger seat. Scott Rout­ley, then 26, had a promis­ing ca­reer in robotics ahead of him. He’d driven just a few blocks when a po­lice cruiser trav­el­ling to the scene of a crime T-boned his car, hit­ting the driver’s side full on. The of­fi­cer and Scott’s girl­friend were taken to the hos­pi­tal with mi­nor in­juries. Scott wasn’t so lucky.

He was ad­mit­ted, and within hours his score on the Glas­gow Coma Scale— a neu­ro­log­i­cal scale used to mea­sure a per­son’s con­scious state—was plum­met­ing. The high­est score, 15, in­di­cates that the pa­tient is fully awake, con­vers­ing nor­mally and obey­ing com­mands. Scott was al­ready a 4, one step away from shut­down. De­spite no out­ward signs of head or fa­cial in­jury, his brain was badly dam­aged.

Twelve years later, I moved from Eng­land to Lon­don, Ont., to be­come the Canada Ex­cel­lence Re­search Chair in Cog­ni­tive Neu­ro­science and Imag­ing at West­ern Univer­sity. Soon af­ter I ar­rived, I heard about Scott. I had con­tacted Bill Payne, a doc­tor at Park­wood Hos­pi­tal, a long-term care fa­cil­ity on the city’s south side, ask­ing whether he knew of any pa­tients who might be suit­able for my team’s stud­ies. Scott was first on Bill’s list. “Scott’s an in­ter­est­ing guy,” Bill said. “His fam­ily are con­vinced he’s aware, but we’ve seen no signs of it, and we’ve been ob­serv­ing him for years.”

I had a chance to take a look at Scott. He cer­tainly seemed veg­e­ta­tive. But I needed an ex­pert sec­ond opin­ion, and no one could pro­vide a bet­ter one than Pro­fes­sor Bryan Young, a se­nior neu­rol­o­gist in the area with an in­ter­na­tional rep­u­ta­tion and years of work­ing with veg­e­ta­tive and co­matose pa­tients.

Bryan had been see­ing Scott reg­u­larly since his ac­ci­dent. As the lo­cal neu­rol­o­gist with the great­est amount of ex­pe­ri­ence in dis­or­ders of con­scious­ness, he had ex­am­ined Scott most closely. He be­lieved Scott was veg­e­ta­tive, so I knew this was likely. I told him I was think­ing of putting Scott into the

WE COULDN’T GET SCOTT TO DO A THUMBS-UP. BUT HIS FAM­ILY RE­MAINED ADAMANT: SCOTT WAS AWARE.

fMRI (func­tional mag­netic res­o­nance imag­ing) scan­ner, and he agreed. “Please tell me what you find,” he said.

I set off to Park­wood to as­sess Scott more thor­oughly, along with Davinia Fernández-Espejo, one of the post­doc­toral stu­dents who had moved with me to Canada from Europe. In a quiet room off the ward where Scott was stay­ing, a nurse in­tro­duced us to his par­ents, Anne and Jim.

Anne, who had worked as a lab tech­nol­o­gist, gave up her job on the day of Scott’s ac­ci­dent. Jim was a for­mer banker and trucker. They were a lovely

cou­ple, clearly de­voted to their son and his life, such as it was, post-in­jury. Af­ter the ac­ci­dent, they had re­lo­cated to a one-storey bun­ga­low out­side Lon­don, where Scott could stay when he wasn’t be­ing cared for full time at Park­wood. They told us that, de­spite his di­ag­no­sis, they be­lieved Scott was re­spond­ing to them. “His face is ex­pres­sive,” Anne in­sisted. “He blinks. He does thumb­sup for pos­i­tives.”

Given Bryan’s mul­ti­ple as­sess­ments over the years, cou­pled with our own eval­u­a­tion of Scott’s con­di­tion, this was a cu­ri­ous com­ment. We couldn’t get him to do a thumbs-up, no mat­ter how hard we tried. I checked his med­i­cal his­tory. Nei­ther Bryan nor any of the other doc­tors who had ex­am­ined Scott since his in­jury had in­di­cated that he could do a thumbs-up. Nev­er­the­less, his fam­ily re­mained adamant: Scott was re­spon­sive, and there­fore he was aware.

CU­RI­OUS AS IT WAS, I had seen this sce­nario many times over the years. In the ab­sence of any clin­i­cal or sci­en­tific ev­i­dence, a fam­ily is con­vinced that the per­son they love is aware. The fam­ily mem­bers speak and in­ter­act with that per­son as though he or she is fully con­scious. Why? Do they have some kind of height­ened sen­si­tiv­ity to the pa­tient’s men­tal state?

One con­se­quence of the bru­tal­ity and abrupt­ness of most se­ri­ous brain in­juries is that the doc­tor who as­sesses the pa­tient—usu­ally a qual­i­fied neu­rol­o­gist—gen­er­ally has not met the per­son in his or her for­mer life. All that the doc­tors know of the pa­tient is what they see af­ter the ac­ci­dent. The

TIME, EF­FORT AND HOPE FUEL WISH­FUL THINK­ING, AND THE HINT OF A RE­SPONSE CAN AL­TER A FAM­ILY’S PER­CEP­TION.

fam­ily has the ben­e­fit of years of ex­pe­ri­ence and a much more com­plete pic­ture of the per­son within. Fam­ily mem­bers also sit at the bed­side hour af­ter hour, day af­ter day, watch­ing for the tini­est sign of aware­ness.

But all of that time, ef­fort and hope surely fuel wish­ful think­ing, and the slight­est hint of a re­sponse can al­ter a fam­ily’s per­cep­tion. We are all sus­cep­ti­ble to what psy­chol­o­gists call “con­fir­ma­tion bias,” which is a real thorn in the side of grey-zone sci­ence, the study of how in­tact minds can some­times be adrift deep within dam­aged bod­ies

and brains. We tend to search for, in­ter­pret, favour and re­call in­for­ma­tion in a way that con­firms our pre­ex­ist­ing be­liefs. If the per­son you love most is ly­ing be­side you in a hos­pi­tal bed, her life hang­ing by a thread, you des­per­ately want her to pull through. And you des­per­ately want her to know you’re there. You ask her to squeeze your hand if she can hear you—and it hap­pens! You feel a dis­tinct in­crease in pres­sure as her hand gen­tly squeezes yours. Your im­me­di­ate re­ac­tion? She did what you asked, she re­sponded, she’s aware! It’s a per­fectly nat­u­ral but un­for­tu­nately un­sci­en­tific re­sponse. Sci­ence de­mands re­pro­ducibil­ity. Fam­i­lies cling to the one time a pa­tient re­sponded on cue to an in­struc­tion, but they ig­nore the count­less other times when there was no re­sponse.

The power of con­fir­ma­tion bias is only half the prob­lem. Imag­ine what hap­pens when you are not there at your loved one’s bed­side. Imag­ine that hand squeezes oc­cur reg­u­larly, all the time, with or with­out an ex­plicit in­struc­tion. It means noth­ing; it’s just a spon­ta­neous au­to­matic move­ment, de­void of con­scious in­tent. But you are not there to ex­pe­ri­ence that.

These two phe­nom­ena (con­fir­ma­tion bias and events oc­cur­ring with­out wit­nesses) con­tribute to our ten­dency to place great weight on the re­sponses we see, and to dis­re­gard neg­a­tive re­sponses or ones we don’t see. Sta­tis­ti­cally, this is all data that should be given the same weight.

I had no idea whether Scott’s fam­ily had suc­cumbed to con­fir­ma­tion bias or whether they truly saw some­thing in him that we could not mea­sure. As

A BBC FILM CREW HAD ASKED IF THEY COULD RECORD OUR SCAN­NING SES­SION WITH SCOTT FOR THE SE­RIES PANORAMA.

a sci­en­tist, I am prone to the for­mer idea, but as a hu­man be­ing I am more than will­ing to ac­cept the lat­ter. It was im­pos­si­ble not to be moved by Scott’s fam­ily and their de­vo­tion to him.

We tried many times, but we could never re­pro­duce any kind of phys­i­cal re­sponse from Scott un­der sci­en­tif­i­cally con­trolled con­di­tions. The ev­i­dence sug­gested that he was in­deed in a veg­e­ta­tive state.

A BBC FILM CREW had asked if they could record the scan­ning ses­sion with Scott. They had been fol­low­ing our

work for their se­ries Panorama, and they would be mak­ing a one-hour doc­u­men­tary about us. Our move to Canada had threat­ened to dis­rupt film­ing, which had be­gun in Eng­land, but the crew, led by med­i­cal cor­re­spon­dent and host Fer­gus Walsh, de­cided to cross the At­lantic and fol­low our progress.

Once I’d agreed to be filmed, a cam­era crew fol­lowed me day and night. They were film­ing Davinia Fernán­dezEspejo and me the day we scanned Scott. As he lay in the ma­chine, Davinia and I went through the usual rou­tine. “Scott, please imag­ine play­ing ten­nis when you hear the in­struc­tion.” Six years ear­lier, my team had hit on the idea of ask­ing pa­tients who were phys­i­cally non-re­spon­sive this ques­tion as a way of iden­ti­fy­ing con­scious­ness. We had needed a task that in­volved in­ten­tional men­tal ac­tiv­ity—one that was com­plex but easy to imag­ine.

I still get goosebumps when I re­call what hap­pened next. The scan of Scott’s brain ex­ploded in an ar­ray of colour—ac­ti­va­tion in­di­cat­ing that he was in­deed re­spond­ing to our re­quest and imag­in­ing he was play­ing ten­nis. “Now imag­ine walk­ing around your house, please, Scott.”

Again his brain re­sponded, demon­strat­ing that he was there, in­side, do­ing ex­actly what he was asked. His fam­ily was right. He was aware of what was go­ing on around him. He could re­spond! Per­haps not with his body in quite the way they had in­sisted he could, but with his brain.

What now? Davinia and I looked at each other ner­vously. We badly wanted to ask him some­thing that could

THE THOUGHT THAT SCOTT MIGHT HAVE BEEN IN PAIN FOR 12 YEARS WAS DREAD­FUL. YET IT WAS A REAL POS­SI­BIL­ITY.

change his life. We had of­ten dis­cussed the ben­e­fits of ask­ing a pa­tient whether he or she was in phys­i­cal pain. If Scott in­di­cated yes, we would need to do some­thing to help him.

The thought that he might have been in pain for 12 years was too dread­ful to con­tem­plate. Yet it was a real pos­si­bil­ity. If he told us he was in pain, I wasn’t sure how I would re­spond. And how would his fam­ily re­act? I needed to talk to Anne.

I walked out of the win­dow­less con­trol room to where I knew Scott’s mother was wait­ing. The om­nipresent

cam­eras fol­lowed me. She stood by the door­way.

My mind raced. “We’d like to ask Scott if he is in any pain, but I’d like your per­mis­sion.”

Anne looked up at me. Through­out this en­tire episode, she had re­mained stoic, al­most cheery. I imag­ined that she must have come to terms with her son’s sit­u­a­tion many years ear­lier.

“Go ahead,” she said, smil­ing. “Let Scott tell you.”

I walked back into the scan­ning room. The at­mos­phere was elec­tric. Ev­ery­one knew what the stakes were. We were go­ing to push grey-zone sci­ence to the next level.

“Scott, are you in any pain? Do any of your body parts hurt right now? Please imag­ine play­ing ten­nis if the an­swer is no.”

I still shud­der when I think about that mo­ment. Through the fMRI win­dow, we could see Scott’s in­ert body in the scan­ner’s glis­ten­ing tube. The in­ter­faces of mul­ti­ple ma­chines worked in elab­o­rate syn­chro­niza­tion so our minds could briefly touch and I could ask him: Are you in pain?

Davinia and I watched the screen in­tently. Fer­gus Walsh, the BBC host, hov­ered by my shoul­der. As we peered at the com­puter, we could see all the folds and crevices of Scott’s brain, both the healthy tis­sue and the part left ir­repara­bly dam­aged by the speed­ing po­lice cruiser.

Then we be­gan to no­tice some­thing more. His brain was spring­ing to life, start­ing to ac­ti­vate. Bright red blobs ap­peared; not ran­domly, but ex­actly where I was press­ing my fin­ger on the com­puter screen.

WHEN I TOLD ANNE THE NEWS, SHE WAS BLASÉ. “I KNEW HE WASN’T IN PAIN. IF HE WAS, HE WOULD HAVE TOLD ME!”

Mo­ments ear­lier, I had told Fer­gus, “If Scott is re­spond­ing, we should see that here,” as I touched the glass. And there it was. He was an­swer­ing the ques­tion. And, more im­por­tant, he was telling us no.

I felt close to tears. It was such a dizzy­ing sit­u­a­tion—a med­i­cal break­through; Scott’s body ly­ing mo­tion­less in the scan­ner; my team stand­ing around in won­der; the all-see­ing eye of what would be prime-time tele­vi­sion watch­ing. The film crew were be­side them­selves; they had got what they wanted, but right that minute

none of it mat­tered. This was Scott’s mo­ment, and he grabbed it.

Af­ter a few min­utes, the ten­sion burst and ev­ery­one heaved a sigh of re­lief. Ev­ery­one, that is, ex­cept Anne. When I told her the news, she was blasé. “I knew he wasn’t in pain. If he was, he would have told me!”

I could only nod dumbly. The courage of both mother and son over­whelmed me. She had stood by him all those years, in­sist­ing that he still mat­tered and de­served af­fec­tion and at­ten­tion. She had not given up on him.

Scott’s re­sponse in the scan­ner sim­ply con­firmed what she al­ready knew. She knew he was in there. How she knew, I will never know. But she knew.

ON THAT DAY, and on many oc­ca­sions over the next year and a half, we con­versed with Scott in the scan­ner. Some­how, he came back to life. He was able to tell us that he knew who he was, where he was, and how much time had passed since the ac­ci­dent.

The ques­tions we asked Scott were cho­sen with two goals in mind. In part, we tried to help him as best we could by ask­ing ques­tions that might im­prove his qual­ity of life. So we asked him whether he liked watch­ing hockey. Be­fore the ac­ci­dent, he had been a fan, so his fam­ily and care­givers would tune his TV to a game as of­ten as pos­si­ble. But more than a decade had passed since the ac­ci­dent. Per­haps he no longer liked hockey. Per­haps he’d watched so much hockey that he couldn’t stand it now. If so, check­ing in on his view­ing pref­er­ences might sig­nif­i­cantly im­prove his qual­ity of life. (For­tu­nately, he still en­joyed hockey.)

LAY­ING DOWN MEM­O­RIES IS CEN­TRAL TO OUR SENSE OF TIME PASS­ING, OF OUR PLACE IN THE SCHEME OF THINGS.

The sec­ond type of ques­tion was cho­sen to re­veal de­tails about his sit­u­a­tion, what he knew, how much he re­mem­bered, what sort of aware­ness he had. These were less about Scott the per­son and more about dig­ging deeper into the grey zone. Un­der­stand­ing that state of limbo was in­cred­i­bly im­por­tant, be­cause no one had that in­for­ma­tion.

Scott an­swered all of those queries and more. When we asked him what year it was by of­fer­ing him a sim­ple mul­ti­ple-choice op­tion—“If we’re in 2012, imag­ine play­ing ten­nis, and if we’re in 1999 imag­ine walk­ing through

your home”—he told us cor­rectly that it was 2012, not 1999, the year of his ac­ci­dent. He knew that he was in a hos­pi­tal and that his name was Scott. He also man­aged to tell us the name of his pri­mary care­giver, some­one he hadn’t known prior to his hos­pi­tal­iza­tion. His know­ing her name proved that he could still lay down mem­o­ries.

Lay­ing down mem­o­ries is cen­tral to our sense of time pass­ing, of life mov­ing along, of our place in the scheme of things. Imag­ine that ev­ery day you woke up and could re­call noth­ing since the day you’d had an ac­ci­dent years ear­lier. How would things feel?

Your nurse, who may have cared for you day and night for a decade, would seem like a com­plete stranger. Your fam­ily and friends, whom you re­called well from be­fore, would sud­denly ap­pear much older. And your home, as­sum­ing you still lived in the same place, would feel as if it had been ex­ten­sively ren­o­vated overnight; ev­ery change that had oc­curred in the in­terim would seem to have hap­pened in the few hours since you went to sleep. Worse, if you’d moved since your ac­ci­dent, you would have no idea where you were.

It was crit­i­cal to know not only that Scott re­mem­bered his past, but that he was aware of the present and aware that to­day’s present would be to­mor­row’s past. We wanted to know that he had the ex­pe­ri­ence of ex­ist­ing in time, of be­ing here to­day as part of an evolv­ing his­tory with events that come and go, all in­flu­enc­ing and be­ing in­flu­enced by other events on the same time­line.

Through­out Scott’s many vis­its to the scan­ning cen­tre to be asked over

SCOTT HAD TOUCHED US PRO­FOUNDLY. WE HAD DUG DEEP INTO HIS LIFE IN THE GREY ZONE, AND HE HAD LEFT US IN AWE.

and over about life in the grey zone, his mother re­mained sup­port­ive. Clearly, not all of these trips were for Scott; some were for sci­ence. In a fine bal­ance, we jug­gled ques­tions that might be use­ful in im­prov­ing his life with ones that might help us un­der­stand and per­haps im­prove the lives of other pa­tients in the grey zone. Anne seemed to un­der­stand that.

SCOTT DIED in Septem­ber 2013 of med­i­cal com­pli­ca­tions from the ac­ci­dent. It shocked my whole team. We had spent many hours with him, and he

had touched us pro­foundly. We had dug deep into his life in the grey zone, and he had re­sponded with an­swers that left us in awe. The re­la­tion­ship we de­vel­oped with the Rout­leys was un­like any other we ex­pe­ri­enced with a pa­tient be­fore or since. In part, it was Anne and Jim’s open­ness in shar­ing their world with us, but more than that, Scott him­self sealed our bond.

Scott was killed by a speed­ing car, but it took him 14 years to die. For pa­tients like him, who en­ter the E.R. with a Glas­gow Coma Scale score of 4 and re­ceive all of the help mod­ern medicine can pro­vide, 87 per cent will ei­ther die or re­main in a veg­e­ta­tive state for­ever. Why do some peo­ple slip into the grey zone? Why does the brain shut down some­times and not oth­ers? I still don’t have the an­swers. Ev­ery brain in­jury is dif­fer­ent.

What be­gan for me as a sci­en­tific ex­plo­ration to un­lock the mys­ter­ies of the hu­man brain has evolved into a dif­fer­ent jour­ney. It’s now about pulling peo­ple out of the void so they can once more take their place in the land of the liv­ing.

Twenty years ago, when we scanned our very first pa­tient, many skep­tics dis­missed our quest to read the minds of those lost in the grey zone. Yet one day such de­cod­ing will be com­mon­place. This is the magic of sci­ence, chip­ping away at ev­ery prob­lem un­til we can hardly be­lieve the progress we’ve been able to make. Ul­ti­mately, grey-zone sci­ence promises to re­veal the se­crets of the uni­verse that each of us car­ries within our minds. It’s about re­con­nect­ing those who have been lost to us with the peo­ple they love and who love them. Each con­tact still feels like a mir­a­cle.

FROM INTO THE GRAY ZONE: A NEU­RO­SCI­EN­TIST EX­PLORES THE BOR­DER BE­TWEEN LIFE AND DEATH BY ADRIAN OWEN. © 2017 BY DR. ADRIAN OWEN. REPRINTED BY PER­MIS­SION OF SCRIBNER, AN IM­PRINT OF SI­MON & SCHUS­TER, INC

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