Trek Magazine - - Take Note - By Heather Amos

A grow­ing field of re­search is ex­am­in­ing the brain pat­terns pro­duced by peo­ple with se­vere brain in­juries who can no longer com­mu­ni­cate and ap­pear to be in a veg­e­ta­tive state. Some have ar­gued that one day we may be able to un­lock a code from these pat­terns and com­mu­ni­cate with these pa­tients.

Two UBC neu­roethi­cists are study­ing what this might mean for Canada and other coun­tries that have re­cently in­tro­duced leg­is­la­tion for physi­cian-as­sisted death. In a JAMA Neu­rol­ogy ar­ti­cle pub­lished this March,

Judy Illes and Emanuel Cabral ex­am­ine the ethics around end-of-life de­ci­sion-mak­ing for pa­tients with these in­juries. Are there any ex­am­ples in Canada or in other coun­tries where pa­tients with se­vere brain in­juries who were un­able to com­mu­ni­cate have been able to ac­cess physi­cian-as­sisted death?

EC: So far in Canada, there are no known cases of pa­tients with brain trauma who have tried to ac­cess physi­cian-as­sisted death. In the United States and the Nether­lands, there have been cases where pa­tients with brain trauma have been asked whether they wanted to pro­long their life. In all of these cases, the pa­tients suf­fered from a spe­cific form of brain trauma called locked-in syn­drome. Essen­tially, these peo­ple main­tain a good awareness and un­der­stand­ing of their sur­round­ings, but are un­able to ver­bally com­mu­ni­cate be­cause they are prac­ti­cally par­a­lyzed within their own bod­ies. In most cases, pa­tients man­age to com­mu­ni­cate through eye-blink­ing or re­stricted body move­ments, and some­times us­ing an al­pha­bet board.

In one such case, physi­cians in the United States were able to as­sess one man’s mem­ory and think­ing by com­mu­ni­cat­ing through small head move­ments. They also al­lowed him to make de­ci­sions on re­ceiv­ing life-pro­long­ing treat­ments us­ing this method. In an­other case in the Nether­lands, an­other man with locked-in syn­drome used blink­ing to com­mu­ni­cate that he wanted physi­cian-as­sisted death. Af­ter sev­eral weeks of con­sult­ing with the pa­tient, other physi­cians and the fam­ily, the pa­tient was ad­min­is­tered life-end­ing drugs.

JI: These pa­tients have used in­di­rect “codes” to ex­press their end-of-life pref­er­ences. Some peo­ple might log­i­cally sug­gest that we can use brain imag­ing as the “code” to com­mu­ni­cate with peo­ple in min­i­mally con­scious states and that, hy­po­thet­i­cally, this could open le­gal av­enues for these pa­tients to re­quest physi­cian-as­sisted death. Our paper an­tic­i­pates this ques­tion and ad­dresses the is­sues around it. How likely is it that we will be com­mu­ni­cat­ing with pa­tients about end-of-life de­ci­sions by an­a­lyz­ing their brain pat­terns? JI: The pub­lic is al­ready ask­ing. We need both to an­tic­i­pate such ques­tions and be pre­pared to be re­spon­sive to them as a pro­fes­sional com­mu­nity. EC: The idea seems far-fetched. How­ever, stud­ies have shown that it might be pos­si­ble to use

brain imag­ing to com­mu­ni­cate with pa­tients in min­i­mally con­scious states. As it stands, this com­mu­ni­ca­tion chan­nel is still quite weak, but, as re­search con­tin­ues, it has led to ques­tions about whether this type of com­mu­ni­ca­tion might be ap­plied to end-of-life care.

Un­der Cana­dian law, ver­bal com­mu­ni­ca­tion is not a re­quire­ment for physi­cian-as­sisted death. How­ever, if the per­son has dif­fi­culty com­mu­ni­cat­ing, ev­ery­thing must be done to pro­vide a re­li­able way through which the per­son can un­der­stand the in­for­ma­tion that is pro­vided to them and com­mu­ni­cate their de­ci­sion. Cur­rently, no such sys­tem ex­ists to do so with pa­tients in min­i­mally con­scious states.

What are your con­cerns about us­ing this form of com­mu­ni­ca­tion?

EC: Peo­ple with se­vere brain trauma make up a highly vul­ner­a­ble and his­tor­i­cally ne­glected pop­u­la­tion whose health is placed in the hands of fam­ily mem­bers or health pro­fes­sion­als. If we con­sider fem­i­nist ethics and dis­abil­ity ethics, they both em­pha­size that we have to be cer­tain that the per­son fully un­der­stands the in­for­ma­tion given to them and their ex­pressed wishes are clear. JI: There is a huge leap, how­ever, be­tween com­mu­ni­cat­ing di­rectly with some­one, com­mu­ni­cat­ing through a tool like a spell­ing board, and us­ing sta­tis­ti­cal in­ter­pre­ta­tion of brain sig­nals as a sign of pref­er­ence or de­sire. We would need to be ab­so­lutely cer­tain that the an­swers in­ter­preted through brain imag­ing are what pa­tients in­tended to ex­press, and that their an­swers re­flect re­pro­ducible, in­tact de­ci­sion-mak­ing abil­i­ties. Re­searchers are still work­ing out how to in­ter­pret the dif­fer­ent sig­nals that in­jured brains pro­duce.

The pro­lif­er­a­tion of fake news is trans­form­ing the way peo­ple, in­clud­ing chil­dren, per­ceive what’s hap­pen­ing in the world around them. Ron Darvin, a lec­turer and re­searcher in the fac­ulty of ed­u­ca­tion, stud­ies dig­i­tal lit­er­acy skills of stu­dents in kin­der­garten through Grade 12. In this Q& A, he dis­cusses the trend of fake news, how to fight it, and what par­ents can do to make sure their chil­dren can tell the dif­fer­ence.

What is fake news?

Fake news has be­come a catch-all term for ev­ery­thing from hoaxes to con­spir­acy the­o­ries to “al­ter­na­tive facts.” To com­bat fake news, we have to dis­tin­guish it from satire or news that peo­ple just don’t want to hear. Fake news is fab­ri­cated, de­cep­tive or dis­torted in­for­ma­tion meant to mis­lead the pub­lic. Mo­ti­va­tions for fake news can be po­lit­i­cal or to pro­mote self-in­ter­ests, while oth­ers do it to get their five min­utes of fame. For some, fake news is a busi­ness. Dig­i­tal ads gen­er­ate prof­its, and web­sites with sen­sa­tional fake news are paid for ev­ery click that they get.

What are some ways peo­ple can com­bat fake news?

While this fea­ture hasn’t made its way to Canada yet, Face­book has started rolling out a third-party fact-check­ing tool in the US and Ger­many that will la­bel fake news shared on the net­work as “dis­puted.” Google Chrome ex­ten­sions in­clude some­thing called a “BS De­tec­tor,” which dis­plays a red warn­ing when you’re about to share some­thing from a ques­tion­able source. Fact-check­ing sites like Snopes and Poli­tifact can also be valu­able re­sources. A site called Hoax Slayer com­bats email scams and de­bunks hoaxes that have gone vi­ral.

Apart from us­ing these tools, users should also know how to ex­am­ine on­line texts more closely. This would in­clude un­der­stand­ing the po­lit­i­cal lean­ings of cer­tain news sites, an­a­lyz­ing do­main names or URLs to make sure they are le­git­i­mate, or rec­og­niz­ing poor web de­sign. Con­sum­ing news ef­fec­tively re­quires the au­di­ence to be vig­i­lant about what they are read­ing, lis­ten­ing or watch­ing, and fig­ur­ing out who cre­ated this con­tent and for what pur­pose.

How can par­ents teach their kids about fake news?

Kids have two worlds: off­line and on­line. More than par­ents just ask­ing their child: “How was school today?” they should also ask them what they’ve read on­line, on Face­book, or seen on Snapchat that day. Par­ents can role model dig­i­tal lit­er­acy skills to their chil­dren and pro­vide them with the right tools to ver­ify what’s on­line. They have to sur­round them with le­git­i­mate news sources and help them learn how to dis­tin­guish fact from opin­ion at a young age.

How is this era of post-truth af­fect­ing kids today?

Fake news has con­se­quences and im­por­tant im­pli­ca­tions for whom we elect, the laws we pass, and the kinds of choices we make in our lives. With­out the right crit­i­cal tools, our kids can be­come not only vic­tims of fake news, but also pro­mot­ers of it, by in­dis­crim­i­nately shar­ing things on­line.

In a cul­ture of click­bait, emo­tions rather than facts can shape pub­lic opin­ion. It be­comes eas­ier for us to rely on what feels right, rather than to fig­ure out what is right. The irony of so­cial me­dia is that while it’s sup­posed to open doors to the rest of the world, it can ac­tu­ally usher us into fil­ter bub­bles where we hear what we want to hear. Face­book prof­its when we keep click­ing, lik­ing and shar­ing stuff on­line, so their al­go­rithms make sure that what pops up on our news­feed will make us com­fort­able enough to keep com­ing back. This bub­ble and what we fill it with nat­u­rally shapes the way our kids will think about the world.

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