1 00:00:08,908 --> 00:00:11,044 WELCOME TO THE CLINICAL CENTER GRAND ROUNDS, 2 00:00:11,111 --> 00:00:14,848 A WEEKLY SERIES OF EDUCATIONAL LECTURES FOR PHYSICIANS AND 3 00:00:14,914 --> 00:00:17,484 HEALTH CARE PROFESSIONALS BROADCAST FROM THE CLINICAL 4 00:00:17,550 --> 00:00:20,453 CENTER AT THE NATIONAL INSTITUTES OF HEALTH IN 5 00:00:20,520 --> 00:00:22,255 BETHESDA, MD. 6 00:00:22,322 --> 00:00:25,792 THE NIH CLINICAL CENTER IS THE WORLD'S LARGEST HOSPITAL TOTALLY 7 00:00:25,859 --> 00:00:29,496 DEDICATED TO INVESTIGATIONAL RESEARCH AND LEADS THE GLOBAL 8 00:00:29,562 --> 00:00:32,432 EFFORT IN TRAINING TODAY'S INVESTIGATORS AND DISCOVERING 9 00:00:32,499 --> 00:00:34,601 TOMORROW'S CURES. 10 00:00:34,667 --> 00:00:43,476 LEARN MORE BY VISITING US ONLINE AT HTTP://CLINICALCENTER.NIH.GOV 11 00:00:43,543 --> 00:00:44,511 >> ALL RIGHT. 12 00:00:44,577 --> 00:00:45,945 LET'S GET STARTED. 13 00:00:46,012 --> 00:00:48,314 I'M GOING TO WELCOME EVERYBODY 14 00:00:48,381 --> 00:00:50,383 TO TODAY'S ETHICS GRAND ROUNDS. 15 00:00:50,450 --> 00:00:52,786 I'M DAVE WENDLER, DEPARTMENT OF 16 00:00:52,852 --> 00:00:54,320 BIOETHICS, NIH CLINICAL CENTER. 17 00:00:54,387 --> 00:00:58,458 AND WE HOST THESE SESSIONS FOUR 18 00:00:58,525 --> 00:01:04,597 TIMES A YEAR . 19 00:01:04,664 --> 00:01:06,566 FOR PEOPLE LOOKING AHEAD THE 20 00:01:06,633 --> 00:01:07,667 NEXT IS FIRST WEDNESDAY IN APRIL 21 00:01:07,734 --> 00:01:11,037 WHERE WE'LL HAVE A SPECIAL 22 00:01:11,104 --> 00:01:12,305 GUEST, WHICH WE'LL DISCLOSE AT A 23 00:01:12,372 --> 00:01:12,605 LATER DATE. 24 00:01:12,672 --> 00:01:14,040 WE'LL TALK ABOUT WHAT'S INVOLVED 25 00:01:14,107 --> 00:01:16,109 IN RESPECTING THE DEAD. 26 00:01:16,176 --> 00:01:17,410 AND WHAT YOU SHOULD OR SHOULDN'T 27 00:01:17,477 --> 00:01:19,412 DO IN TERMS OF RESPECTING THE 28 00:01:19,479 --> 00:01:20,146 DEAD. 29 00:01:20,213 --> 00:01:23,116 THAT'S THE FIRST WEDNESDAY IN 30 00:01:23,183 --> 00:01:23,349 APRIL. 31 00:01:23,416 --> 00:01:25,752 SO, THE GOAL OF ETHICS GRAND 32 00:01:25,819 --> 00:01:27,187 ROUNDS, JUST TO REMIND PEOPLE 33 00:01:27,253 --> 00:01:33,426 WHO ARE NEW, IT'S NOT TO PRESENT 34 00:01:33,493 --> 00:01:34,494 POLICY OR DIRECTIONS. 35 00:01:34,561 --> 00:01:37,130 OUR DEPARTMENT IDENTIFIES WHAT 36 00:01:37,197 --> 00:01:39,032 WE NEW ENGLAND ARE IMPORTANT 37 00:01:39,098 --> 00:01:40,233 INTERESTING ETHICAL ISSUES, THEN 38 00:01:40,300 --> 00:01:42,535 THE GOAL OF ETHICS GRAND ROUNDS 39 00:01:42,602 --> 00:01:43,837 IS PROVIDE A FORUM FOR 40 00:01:43,903 --> 00:01:47,373 DISCUSSING THOSE ISSUES IN A 41 00:01:47,440 --> 00:01:50,777 BROADER NIH COMMUNITY. 42 00:01:50,844 --> 00:01:59,419 WE'RE NOT SPOKESPERSONS, I'M 'EM 43 00:01:59,486 --> 00:02:01,087 EMPHATICALLY NOT A 44 00:02:01,154 --> 00:02:02,489 SPOKESPERSON, NEITHER IS THE 45 00:02:02,555 --> 00:02:04,457 DISCUSSANT. 46 00:02:04,524 --> 00:02:05,792 WE'RE GIVING OUR OWN VIEWS. 47 00:02:05,859 --> 00:02:07,193 HAVING A DISCUSSION IS MORE TRUE 48 00:02:07,260 --> 00:02:08,628 AS YOU'LL SEE TODAY THAN 49 00:02:08,695 --> 00:02:09,729 TYPICALLY IS. 50 00:02:09,796 --> 00:02:10,930 TYPICALLY WE FOCUS ON A CASE 51 00:02:10,997 --> 00:02:13,566 THAT A LOT OF PEOPLE WILL 52 00:02:13,633 --> 00:02:14,767 INTUITIVELY UNDERSTAND CLEARLY 53 00:02:14,834 --> 00:02:16,336 LIKE THE ETHICS OF DECEIVING 54 00:02:16,402 --> 00:02:18,404 SOMEBODY AS PART OF A RESEARCH 55 00:02:18,471 --> 00:02:18,605 STUDY. 56 00:02:18,671 --> 00:02:21,241 THIS ONE IS A LITTLE BIT MORE 57 00:02:21,307 --> 00:02:22,442 COMPLICATED AND WE'RE GOING TO 58 00:02:22,509 --> 00:02:25,278 TALK THROUGH THAT. 59 00:02:25,345 --> 00:02:26,813 SO THERE WILL BE A LITTLE MORE 60 00:02:26,880 --> 00:02:28,448 EXPLANATION BEFORE WE GET GOING. 61 00:02:28,515 --> 00:02:29,315 A COUPLE THINGS. 62 00:02:29,382 --> 00:02:31,417 IF YOU HAVE QUESTIONS IN THE 63 00:02:31,484 --> 00:02:32,552 AUDITORIUM, PLEASE GO TO THE 64 00:02:32,619 --> 00:02:35,288 MICS IN THE AISLE. 65 00:02:35,355 --> 00:02:36,256 IF YOU'RE ONLINE FINISHED THE 66 00:02:36,322 --> 00:02:37,790 "LIVE FEEDBACK" BUTTON ON THE 67 00:02:37,857 --> 00:02:39,692 WEBSITE, AND THOSE QUESTIONS ARE 68 00:02:39,759 --> 00:02:42,829 BEING FORWARDED TO MY COLLEAGUE 69 00:02:42,896 --> 00:02:44,597 HOLLY TAYLOR, WHO HAS GRACIOUSLY 70 00:02:44,664 --> 00:02:45,999 AGREED TO FIELD THOSE. 71 00:02:46,065 --> 00:02:46,799 WE ALWAYS GET MORE QUESTIONS 72 00:02:46,866 --> 00:02:48,968 THAN WE HAVE TIME TO ANSWER SO 73 00:02:49,035 --> 00:02:51,804 WE APOLOGIZE IF WE DON'T GET TO 74 00:02:51,871 --> 00:02:52,171 YOUR QUESTIONS. 75 00:02:52,238 --> 00:02:53,673 IF WE DON'T, I'LL TRY TO GET TO 76 00:02:53,740 --> 00:02:55,308 THEM AFTER SESSION IS OVER. 77 00:02:55,375 --> 00:02:58,678 HOLLY WILL AT LEAST READ SOME OF 78 00:02:58,745 --> 00:03:00,647 THEM HERE FROM THE PEOPLE ONLINE 79 00:03:00,713 --> 00:03:01,748 AS WE GO. 80 00:03:01,814 --> 00:03:03,383 ANOTHER THING IS THAT CME CREDIT 81 00:03:03,449 --> 00:03:05,718 IS OFFERED FOR THIS SESSION. 82 00:03:05,785 --> 00:03:08,121 TO CLAIM CME CREDIT, WHAT YOU 83 00:03:08,187 --> 00:03:10,390 HAVE DO IS TEXT THE NUMBER I'M 84 00:03:10,456 --> 00:03:12,825 ABOUT TO TELL YOU TO THE HOPKINS 85 00:03:12,892 --> 00:03:14,594 PHONE NUMBER WHICH SHOULD SHOW 86 00:03:14,661 --> 00:03:16,462 UP ON A SLIDE HERE IN A MINUTE. 87 00:03:16,529 --> 00:03:21,367 THE NUMBER YOU WANT TO TEXT IS 88 00:03:21,434 --> 00:03:21,935 50543. 89 00:03:22,001 --> 00:03:29,676 THE NUMBER FOR CME CREDIT TO 90 00:03:29,742 --> 00:03:32,245 TEXT IS 50543. 91 00:03:32,312 --> 00:03:32,812 OKAY. 92 00:03:32,879 --> 00:03:34,981 SO, TODAY'S SESSION STARTS WITH 93 00:03:35,048 --> 00:03:36,749 THE FACT, FOCUS ON CLINICAL 94 00:03:36,816 --> 00:03:40,119 RESEARCH, AND TRYING TO FIGURE 95 00:03:40,186 --> 00:03:41,888 OUT WHAT'S INVOLVED IN 96 00:03:41,955 --> 00:03:43,289 PROTECTING PEOPLE IN CLINICAL 97 00:03:43,356 --> 00:03:44,958 RESEARCH, MAKING SURE THAT THERE 98 00:03:45,024 --> 00:03:47,360 AREN'T ABUSES IN CLINICAL 99 00:03:47,427 --> 00:03:47,627 RESEARCH. 100 00:03:47,694 --> 00:03:50,096 FOR PEOPLE THAT KNOW ANYTHING 101 00:03:50,163 --> 00:03:51,864 ABOUT THE HISTORY OF CLINICAL, 102 00:03:51,931 --> 00:03:52,732 IT'S SOMETIMES DESCRIBED AS BORN 103 00:03:52,799 --> 00:03:56,102 IN SCANDAL WHERE THE IDEA IS 104 00:03:56,169 --> 00:04:05,945 THERE HAVE BEEN SOME FAMOUS 105 00:04:06,012 --> 00:04:07,347 ABUSES, TUSKEGEE SYPHILIS STUDY 106 00:04:07,413 --> 00:04:10,316 BEING PROMINENT, AND A LOT OF 107 00:04:10,383 --> 00:04:12,285 WORK TO PREVENT SUCH SCANDALS IN 108 00:04:12,352 --> 00:04:13,052 HAPPENING AGAIN IN THE FUTURE. 109 00:04:13,119 --> 00:04:14,587 ONE OF THE BIG PROTECTIONS 110 00:04:14,654 --> 00:04:17,123 PEOPLE ARE FAMILIAR WITH IS 111 00:04:17,190 --> 00:04:17,857 INFORMED CONSENT. 112 00:04:17,924 --> 00:04:19,525 THE THOUGHT IS ONE OF THE 113 00:04:19,592 --> 00:04:21,060 IMPORTANT WAYS TO PROTECT 114 00:04:21,127 --> 00:04:23,129 RESEARCH PARTICIPANTS IS TO MAKE 115 00:04:23,196 --> 00:04:26,099 SURE, A, THAT THEY UNDERSTAND 116 00:04:26,165 --> 00:04:27,867 THE STUDY IN QUESTION AND, B, 117 00:04:27,934 --> 00:04:30,570 THEY AGREE TO BE IN THAT STUDY. 118 00:04:30,637 --> 00:04:31,337 THAT'S A VERY STANDARD 119 00:04:31,404 --> 00:04:32,171 PROTECTION. 120 00:04:32,238 --> 00:04:34,073 AND THEN IT RAISES THE CHALLENGE 121 00:04:34,140 --> 00:04:37,443 OF WHAT DO WE DO WITH PEOPLE WHO 122 00:04:37,510 --> 00:04:38,578 DON'T SEEM TO UNDERSTAND AS WELL 123 00:04:38,645 --> 00:04:39,879 AS WE WOULD LIKE. 124 00:04:39,946 --> 00:04:43,349 SO PERHAPS DUE TO A COGNITIVE OR 125 00:04:43,416 --> 00:04:44,017 INTELLECTUAL IMPAIRMENT, THEY 126 00:04:44,083 --> 00:04:45,818 ARE NOT ABLE TO UNDERSTAND THE 127 00:04:45,885 --> 00:04:47,587 STUDY TO THE EXTENT THAT WE 128 00:04:47,654 --> 00:04:50,490 THINK THEY SHOULD TO BE ABLE TO 129 00:04:50,556 --> 00:04:53,092 GIVE THEIR OWN INFORMED CONSENT. 130 00:04:53,159 --> 00:04:54,527 SO, ONE ANSWER, FAMOUSLY GIVEN 131 00:04:54,594 --> 00:04:55,828 BY THE NUREMBERG CODE, THAT 132 00:04:55,895 --> 00:04:58,031 THOSE PEOPLE SHOULDN'T BE 133 00:04:58,097 --> 00:04:58,698 ALLOWED IN CLINICAL RESEARCH. 134 00:04:58,765 --> 00:05:00,700 THE WAY TO PROTECT THEM IS JUST 135 00:05:00,767 --> 00:05:02,535 TO EXCLUDE THEM AND TO KEEP 136 00:05:02,602 --> 00:05:04,437 PEOPLE WHO CAN'T CONSENT FOR 137 00:05:04,504 --> 00:05:06,539 THEMSELVES OUT OF RESEARCH. 138 00:05:06,606 --> 00:05:08,107 SO, THAT HAS OBVIOUS ADVANTAGES 139 00:05:08,174 --> 00:05:09,876 IN TERMS OF PROTECTION. 140 00:05:09,942 --> 00:05:11,177 THE WORRY OBVIOUSLY IS THAT 141 00:05:11,244 --> 00:05:12,445 SOMETIMES BEING IN A RESEARCH 142 00:05:12,512 --> 00:05:15,481 STUDY CAN PROMOTE THE PERSON'S 143 00:05:15,548 --> 00:05:17,550 OWN INTERESTS, SO IF YOU 144 00:05:17,617 --> 00:05:19,185 PRECLUDE PEOPLE WITH DECISIONAL 145 00:05:19,252 --> 00:05:20,153 INCAPACITY FROM THOSE STUDIES, 146 00:05:20,219 --> 00:05:22,255 THEY ARE DENIED THE POTENTIAL 147 00:05:22,321 --> 00:05:22,889 BENEFITS. 148 00:05:22,955 --> 00:05:24,223 ALSO THERE'S CONCERN FROM THE 149 00:05:24,290 --> 00:05:26,726 RESEARCH SIDE IF ALL THOSE 150 00:05:26,793 --> 00:05:27,860 PARTICIPANTS AREN'T ALLOWED INTO 151 00:05:27,927 --> 00:05:29,495 THE STUDIES, THERE'S A WORRY 152 00:05:29,562 --> 00:05:31,230 IT'S GOING TO UNDERMINE THE 153 00:05:31,297 --> 00:05:32,765 POTENTIAL TO DO RESEARCH ON THE 154 00:05:32,832 --> 00:05:34,300 CONDITIONS THAT AFFECT THEM AND 155 00:05:34,367 --> 00:05:35,702 COME UP WITH IMPROVED TREATMENTS 156 00:05:35,768 --> 00:05:36,836 FOR THOSE CONDITIONS. 157 00:05:36,903 --> 00:05:39,672 SO, THAT GETS US TO CURRENT 158 00:05:39,739 --> 00:05:40,306 PRACTICE. 159 00:05:40,373 --> 00:05:43,042 CURRENT PRACTICE IS BASICALLY 160 00:05:43,109 --> 00:05:46,579 WITH SOME LIMITATIONS AND 161 00:05:46,646 --> 00:05:48,214 SAFEGUARDS WE'LL DESCRIBE, TO 162 00:05:48,281 --> 00:05:49,749 ALLOW PEOPLE WITH DECISIONAL 163 00:05:49,816 --> 00:05:51,150 CAPACITY TO PARTICIPATE BUT THEY 164 00:05:51,217 --> 00:05:54,120 HAVE TO HAVE -- WHEN THE FEDERAL 165 00:05:54,187 --> 00:05:56,522 REGULATIONS CALL A LEGALLY 166 00:05:56,589 --> 00:05:57,123 AUTHORIZED REPRESENTATIVE OR 167 00:05:57,190 --> 00:05:57,824 SURROGATE WHO GIVES PERMISSION 168 00:05:57,890 --> 00:05:58,391 FOR THEM. 169 00:05:58,458 --> 00:06:01,327 THAT'S A WAY TO TRY TO PROTECT 170 00:06:01,394 --> 00:06:03,496 THOSE INDIVIDUALS EVEN THOUGH 171 00:06:03,563 --> 00:06:04,497 THEY CAN'T UNDERSTAND, SOMEBODY 172 00:06:04,564 --> 00:06:05,598 ELSE HOPEFULLY UNDERSTANDS AND 173 00:06:05,665 --> 00:06:06,365 GIVES PERMISSION FOR THEM. 174 00:06:06,432 --> 00:06:09,001 ONE OF THE PROBLEMS PEOPLE HAVE 175 00:06:09,068 --> 00:06:10,737 BEEN DISCUSSING LATELY IS WORRY 176 00:06:10,803 --> 00:06:13,206 THAT SORT OF RELEGATES THE 177 00:06:13,272 --> 00:06:15,441 PARTICIPANT THEMSELVES INTO THE 178 00:06:15,508 --> 00:06:16,442 BACKGROUND, IN DECISIONS ABOUT 179 00:06:16,509 --> 00:06:17,310 THEIR OWN RESEARCH 180 00:06:17,376 --> 00:06:18,578 PARTICIPATION, THAT THEY GET 181 00:06:18,644 --> 00:06:21,247 MADE BY SOMEBODY OTHER THAN THE 182 00:06:21,314 --> 00:06:22,248 PARTICIPANT THEMSELVES, NAMELY 183 00:06:22,315 --> 00:06:24,984 THEIR SURROGATE OR THEIR LEGALLY 184 00:06:25,051 --> 00:06:25,752 AUTHORIZED REPRESENTATIVE. 185 00:06:25,818 --> 00:06:27,587 AND SO THERE'S A QUESTION ABOUT 186 00:06:27,653 --> 00:06:31,090 WHETHER OR NOT THERE'S A WAY TO 187 00:06:31,157 --> 00:06:31,958 DELAYS CONCERN WHILE STILL 188 00:06:32,024 --> 00:06:33,292 PROTECTING THESE INDIVIDUALS. 189 00:06:33,359 --> 00:06:36,229 WHAT I'M GOING TO DO, A LOT OF 190 00:06:36,295 --> 00:06:37,764 THIS DEBATE STARTED IN EUROPE A 191 00:06:37,830 --> 00:06:38,765 WHILE AGO. 192 00:06:38,831 --> 00:06:39,932 IT'S JUST STARTING TO COME TO 193 00:06:39,999 --> 00:06:40,299 THE U.S. 194 00:06:40,366 --> 00:06:42,602 AND SO ONE OF THE THINGS WE WANT 195 00:06:42,668 --> 00:06:45,538 TO DO IS HAVE THAT DISCUSSION 196 00:06:45,605 --> 00:06:46,773 STARTED ABOUT THAT IN THE 197 00:06:46,839 --> 00:06:49,275 CONTEXT OF CLINICAL RESEARCH. 198 00:06:49,342 --> 00:06:49,876 I'M TALKING ABOUT SUPPORTED 199 00:06:49,942 --> 00:06:50,710 DECISION MAKING. 200 00:06:50,777 --> 00:06:53,012 FOR PEOPLE WHO DON'T KNOW THAT, 201 00:06:53,079 --> 00:06:54,313 WHERE IT STARTED IS BASICALLY 202 00:06:54,380 --> 00:06:56,516 WITH THE U.N. CONVENTION ON THE 203 00:06:56,582 --> 00:06:57,250 RIGHTS OF PERSONS WITH 204 00:06:57,316 --> 00:06:57,817 DISABILITIES. 205 00:06:57,884 --> 00:06:59,752 SO I'M GOING TO READ TWO 206 00:06:59,819 --> 00:07:01,320 CRITICAL PASSAGES FROM THE U.N. 207 00:07:01,387 --> 00:07:02,288 CONVENTION FROM ARTICLE 12. 208 00:07:02,355 --> 00:07:05,792 IT'S THE CRITICAL ONE FOR US. 209 00:07:05,858 --> 00:07:09,495 THE FIRST ONE SAYS PERSONS WITH 210 00:07:09,562 --> 00:07:10,396 DISABILITIES ENJOY LEGAL 211 00:07:10,463 --> 00:07:13,332 CAPACITY ON AN EQUAL BASIS WITH 212 00:07:13,399 --> 00:07:15,535 OTHERS IN ALL ASPECTS OF LIFE. 213 00:07:15,601 --> 00:07:17,170 SO, PERSONS WITH DISABILITIES 214 00:07:17,236 --> 00:07:19,138 ENJOY LEGAL CAPACITY ON AN EQUAL 215 00:07:19,205 --> 00:07:21,240 BASIS IN ALL ASPECTS OF LIFE. 216 00:07:21,307 --> 00:07:23,409 SO, IF YOU APPLY THAT TO 217 00:07:23,476 --> 00:07:24,210 CLINICAL RESEARCH, IT SOUNDS 218 00:07:24,277 --> 00:07:26,712 LIKE AT LEAST ON ONE 219 00:07:26,779 --> 00:07:27,713 INTERPRETATION THAT IT SUGGESTS 220 00:07:27,780 --> 00:07:30,116 EVEN PEOPLE WHO HAVE DECISIONAL 221 00:07:30,183 --> 00:07:31,517 IMPAIRMENTS HAVE EQUAL LEGAL 222 00:07:31,584 --> 00:07:34,053 CAPACITY, SHOULD DECIDE FOR 223 00:07:34,120 --> 00:07:34,353 THEMSELVES. 224 00:07:34,420 --> 00:07:35,721 MAKES SENSE IN TERMS OF 225 00:07:35,788 --> 00:07:37,590 RESPECTING THEM. 226 00:07:37,657 --> 00:07:38,791 OBVIOUSLY RAISES CONCERNS ABOUT 227 00:07:38,858 --> 00:07:39,458 PROTECTION. 228 00:07:39,525 --> 00:07:41,294 WELL, A LITTLE BIT FURTHER DOWN, 229 00:07:41,360 --> 00:07:43,563 WHAT ARTICLE 12 SAYS, BUT IN A 230 00:07:43,629 --> 00:07:46,332 PROCESS WE NEED TO ENSURE THAT 231 00:07:46,399 --> 00:07:48,935 ALL MEASURES ARE TAKEN TO 232 00:07:49,001 --> 00:07:50,703 PROVIDE APPROPRIATE AND 233 00:07:50,770 --> 00:07:52,572 EFFECTIVE SAFEGUARDS TO PREVENT 234 00:07:52,638 --> 00:07:53,339 ABUSE. 235 00:07:53,406 --> 00:07:56,175 AND SO, THE CHALLENGE FOR 236 00:07:56,242 --> 00:07:57,376 THINKING HOW TO APPLY SUPPORTIVE 237 00:07:57,443 --> 00:07:59,345 DECISION MAKING IN THE RESEARCH 238 00:07:59,412 --> 00:08:02,748 CONTEXT IS THINKING HOW CAN WE 239 00:08:02,815 --> 00:08:03,950 ENSURE APPROPRIATE AND EQUAL 240 00:08:04,016 --> 00:08:07,353 RESPECT AND TREATMENT FOR PEOPLE 241 00:08:07,420 --> 00:08:08,521 WITH DECISIONAL CAPACITY BUT IN 242 00:08:08,588 --> 00:08:10,289 A WAY THEY GET EFFECTIVE 243 00:08:10,356 --> 00:08:10,590 SAFEGUARDS. 244 00:08:10,656 --> 00:08:11,624 I'M GOING TO START. 245 00:08:11,691 --> 00:08:13,025 I'M GOING TO PRESENT A CASE I 246 00:08:13,092 --> 00:08:15,528 WAS INVOLVED IN A WHILE AGO, 247 00:08:15,595 --> 00:08:17,296 DESCRIBE HOW CURRENT PRACTICE 248 00:08:17,363 --> 00:08:19,265 HANDLES IT, AND I'M ALSO GOING 249 00:08:19,332 --> 00:08:21,334 TO DESCRIBE A PROPOSAL THAT I 250 00:08:21,400 --> 00:08:22,435 ALONG WITH MY COLLEAGUE SCOTT 251 00:08:22,501 --> 00:08:24,537 KIM MADE IN A PAPER PUBLISHED A 252 00:08:24,604 --> 00:08:26,272 FEW YEARS AGO, AND THEN WE'RE 253 00:08:26,339 --> 00:08:28,507 GOING TO HAVE SOME COMMENTS ON 254 00:08:28,574 --> 00:08:30,243 THAT AND SOME DISCUSSIONS. 255 00:08:30,309 --> 00:08:34,080 I'LL START WITH MINE AND WITH 256 00:08:34,146 --> 00:08:35,081 THE CASE FIRST. 257 00:08:35,147 --> 00:08:36,782 SO, HERE WE GO. 258 00:08:36,849 --> 00:08:37,783 THANK YOU. 259 00:08:37,850 --> 00:08:40,953 SO, MY TITLE IS THINKING ABOUT 260 00:08:41,020 --> 00:08:41,921 HOW WE SHOULD IMPLEMENT 261 00:08:41,988 --> 00:08:43,022 SUPPORTED DECISION MAKING. 262 00:08:43,089 --> 00:08:45,892 YOU'LL GET A SENSE FOR WHAT THAT 263 00:08:45,958 --> 00:08:47,526 MEANS AS WE GO ALONG. 264 00:08:47,593 --> 00:08:47,727 OKAY. 265 00:08:47,793 --> 00:08:49,929 SO I DON'T HAVE ANY CONFLICTS OF 266 00:08:49,996 --> 00:08:50,196 INTEREST. 267 00:08:50,263 --> 00:08:52,565 HERE WITH MY LEARNING 268 00:08:52,632 --> 00:08:52,865 OBJECTIVES. 269 00:08:52,932 --> 00:08:54,967 SO, I'M GOING START WITH A CASE. 270 00:08:55,034 --> 00:08:57,169 IT'S MODIFIED SOMEWHAT. 271 00:08:57,236 --> 00:08:58,771 IT'S ANONYMIZED, A CASE I WAS 272 00:08:58,838 --> 00:09:01,741 INVOLVED IN A NUMBER OF YEARS 273 00:09:01,807 --> 00:09:02,074 AGO. 274 00:09:02,141 --> 00:09:04,577 IT REFERS TO MISS PEANUT, REAL 275 00:09:04,644 --> 00:09:08,214 NAME OR REAL INITIAL, A RETIRED 276 00:09:08,281 --> 00:09:08,948 MATHEMATICS PROFESSOR, 277 00:09:09,015 --> 00:09:10,716 APPARENTLY GROWING UP WAS A 278 00:09:10,783 --> 00:09:11,484 MATHEMATICAL GENIUS. 279 00:09:11,550 --> 00:09:13,152 SHE WAS BROUGHT TO THE CLINICAL 280 00:09:13,219 --> 00:09:15,087 CENTER BY HER HUSBAND WHO 281 00:09:15,154 --> 00:09:18,491 STARTED HAVING WORRIES ABOUT HER 282 00:09:18,557 --> 00:09:19,458 MEMORY. 283 00:09:19,525 --> 00:09:21,560 WHAT APPEARED TO BE FAILING 284 00:09:21,627 --> 00:09:21,894 MEMORY. 285 00:09:21,961 --> 00:09:23,195 THE HUSBAND REPORTED FOR AT 286 00:09:23,262 --> 00:09:26,699 LEAST A YEAR, PROBABLY LONGER, 287 00:09:26,766 --> 00:09:29,135 SEEMED LIKE MISS P WAS HAVING 288 00:09:29,201 --> 00:09:30,236 MORE TROUBLE WITH MEMORY AND 289 00:09:30,303 --> 00:09:31,337 SIMPLE TASKS. 290 00:09:31,404 --> 00:09:33,005 THIS IS A MATHEMATICAL GENIUS 291 00:09:33,072 --> 00:09:34,507 WHO COULD KNOW LONGER FIGURE OUT 292 00:09:34,573 --> 00:09:37,243 HOW TO PAY TAX BILLS, CALCULATE 293 00:09:37,310 --> 00:09:39,011 SIMPLE INTEREST OR DO BASIC 294 00:09:39,078 --> 00:09:39,478 MATH. 295 00:09:39,545 --> 00:09:41,314 SHE STILL COULD PERFORM HER 296 00:09:41,380 --> 00:09:44,383 ADLs, ABLE TO ADDRESS HERSELF, 297 00:09:44,450 --> 00:09:45,284 SHOWER AND TOILET HERSELF, ABLE 298 00:09:45,351 --> 00:09:49,288 TO TAKE CARE OF HERSELF BUT HAD 299 00:09:49,355 --> 00:09:50,923 TROUBLE WITH MEMORY AND 300 00:09:50,990 --> 00:09:52,391 UNDERSTANDING CERTAIN THINGS. 301 00:09:52,458 --> 00:09:54,560 SO, SHE CAME TO THE CLINICAL 302 00:09:54,627 --> 00:09:56,195 CENTER, AND THEY WERE 303 00:09:56,262 --> 00:09:59,365 CONSIDERING HER FOR A 304 00:09:59,432 --> 00:10:00,232 THREE-PATIENT THREE-WEEK 305 00:10:00,299 --> 00:10:00,967 INPATIENT EVAL STUDY THAT WAS 306 00:10:01,033 --> 00:10:02,435 BEING DONE AT THE TIME. 307 00:10:02,501 --> 00:10:04,403 AND IT WAS BASICALLY JUST A 308 00:10:04,470 --> 00:10:05,504 RESEARCH STUDY. 309 00:10:05,571 --> 00:10:07,473 THERE WASN'T ANY TREATMENT AS 310 00:10:07,540 --> 00:10:08,774 PART OF THIS. 311 00:10:08,841 --> 00:10:09,742 THIS WAS AN ALZHEIMER'S TEAM, AT 312 00:10:09,809 --> 00:10:12,278 THE TIME THERE WAS ABSOLUTELY NO 313 00:10:12,345 --> 00:10:12,545 TREATMENT. 314 00:10:12,611 --> 00:10:13,512 ABSOLUTELY WE'RE STILL LOOKING 315 00:10:13,579 --> 00:10:20,319 FOR E EFFECTIVE ONES. 316 00:10:20,386 --> 00:10:22,722 IT INVOLVED A HEAD MRI LUMBAR 317 00:10:22,788 --> 00:10:24,190 AND PUNCTURE STUDIES AND A LOT 318 00:10:24,256 --> 00:10:24,757 OF QUESTIONS. 319 00:10:24,824 --> 00:10:25,758 THE QUESTION WAS WHETHER OR NOT 320 00:10:25,825 --> 00:10:27,426 IT WOULD BE APPROPRIATE TO 321 00:10:27,493 --> 00:10:30,830 ENROLL MS. P IN THIS STUDY. 322 00:10:30,896 --> 00:10:33,132 SO, WE TALKED TO MS. P. 323 00:10:33,199 --> 00:10:34,200 SHE WAS COOPERATIVE. 324 00:10:34,266 --> 00:10:35,868 SHE WAS FRIENDLY, EASY TO TALK. 325 00:10:35,935 --> 00:10:37,737 TO SHE ENGAGED WELL WITH YOU, 326 00:10:37,803 --> 00:10:40,339 SHE HAD AN EASY TIME WITH BACK 327 00:10:40,406 --> 00:10:41,340 AND FORTH CONVERSATION. 328 00:10:41,407 --> 00:10:43,075 I ACTUALLY ASKED HER WHY HER 329 00:10:43,142 --> 00:10:44,944 HUSBAND HAD BROUGHT HER TO THE 330 00:10:45,011 --> 00:10:46,345 CLINICAL CENTER, AND SHE SORT OF 331 00:10:46,412 --> 00:10:48,447 HELD UP HER ARM AND SAID THAT 332 00:10:48,514 --> 00:10:50,416 HER WRIST HAD BEEN BOTHERING HER 333 00:10:50,483 --> 00:10:52,084 FOR A WHILE, AND IT WAS REALLY 334 00:10:52,151 --> 00:10:54,053 MAKING IT HARD OR AT LEAST 335 00:10:54,120 --> 00:10:55,388 PAINFUL FOR HER WHEN SHE TRIED 336 00:10:55,454 --> 00:10:56,255 TO TYPE. 337 00:10:56,322 --> 00:10:58,124 SHE ALSO SAID SOME THINGS ABOUT 338 00:10:58,190 --> 00:10:59,625 NOT BEING ABLE TO SLEEP AS SHE 339 00:10:59,692 --> 00:11:01,494 USED TO BE ABLE TO. 340 00:11:01,560 --> 00:11:03,796 SO I ASKED HER, WELL, HOW IS 341 00:11:03,863 --> 00:11:04,797 YOUR MEMORY GOING? 342 00:11:04,864 --> 00:11:06,665 ANY ISSUES WITH YOUR MEMORY? 343 00:11:06,732 --> 00:11:08,834 AND SHE SAID, YEAH, I'M A LITTLE 344 00:11:08,901 --> 00:11:10,603 BIT FORGETFUL. 345 00:11:10,669 --> 00:11:12,772 BUT IT TURNS OUT SHE HAD CLEAR 346 00:11:12,838 --> 00:11:13,672 SUBSTANTIAL DEFICIT. 347 00:11:13,739 --> 00:11:15,408 FOR INSTANCE, SHE COULDN'T TELL 348 00:11:15,474 --> 00:11:17,109 YOU HOW MANY CHILDREN THAT SHE 349 00:11:17,176 --> 00:11:17,276 HAD. 350 00:11:17,343 --> 00:11:19,345 SHE HAD THREE OF THEM. 351 00:11:19,412 --> 00:11:20,246 SHE COULDN'T REMEMBER. 352 00:11:20,312 --> 00:11:22,314 SHE WOULD SORT OF FUDGE AROUND. 353 00:11:22,381 --> 00:11:23,816 I HAVE A COUPLE. 354 00:11:23,883 --> 00:11:26,452 TWO, THREE, FOUR, I'M NOT REALLY 355 00:11:26,519 --> 00:11:27,319 SURE. 356 00:11:27,386 --> 00:11:27,520 OKAY. 357 00:11:27,586 --> 00:11:28,954 SO THE RESEARCHERS EXPLAINED THE 358 00:11:29,021 --> 00:11:29,822 STUDY TO HER. 359 00:11:29,889 --> 00:11:31,257 THEY EXPLAINED SHE WAS BEING 360 00:11:31,323 --> 00:11:33,559 INVITED TO PARTICIPATE IN A 361 00:11:33,626 --> 00:11:36,962 RESEARCH STUDY TO ASSESS 362 00:11:37,029 --> 00:11:38,597 COGNITIVE FUNCTION AND MEMORY. 363 00:11:38,664 --> 00:11:39,698 RESEARCHER EXPLAINED AND SAID 364 00:11:39,765 --> 00:11:41,634 THIS ISN'T FOR YOU, THIS IS FOR 365 00:11:41,700 --> 00:11:43,636 US TO LEARN SOME THINGS THAT 366 00:11:43,702 --> 00:11:45,271 MIGHT HELP PEOPLE IN THE FUTURE 367 00:11:45,337 --> 00:11:46,906 AND WE WANT TO KNOW WHETHER OR 368 00:11:46,972 --> 00:11:48,140 NOT YOU'D BE INTERESTED IN 369 00:11:48,207 --> 00:11:50,543 JOINING US IN THAT ENDEAVOR. 370 00:11:50,609 --> 00:11:52,311 SO HERE'S WHAT MS. P SAID. 371 00:11:52,378 --> 00:11:54,947 WE TALKED TO HER FOR A WHILE. 372 00:11:55,014 --> 00:11:58,317 I THINK SHE PRETTY WELL 373 00:11:58,384 --> 00:11:59,952 UNDERSTOOD PROCEDURES INCLUDING 374 00:12:00,019 --> 00:12:02,822 THE MRI, A NARROW TUBE YOU GO 375 00:12:02,888 --> 00:12:03,689 INTO. 376 00:12:03,756 --> 00:12:05,991 SHE SAID SHE HAD MOST BEFORE AND 377 00:12:06,058 --> 00:12:06,959 WAS COMFORTABLE UNDERGOING THEM 378 00:12:07,026 --> 00:12:07,159 AGAIN. 379 00:12:07,226 --> 00:12:08,294 SHE DIDN'T SEEM TO UNDERSTAND 380 00:12:08,360 --> 00:12:09,128 THE RISK. 381 00:12:09,195 --> 00:12:10,930 SHE REALLY STRUGGLED WITH THE 382 00:12:10,996 --> 00:12:14,667 RISKS OF A LUMBAR PUNCTURE AND 383 00:12:14,733 --> 00:12:15,901 IDEA OF RESIDUAL BLEEDING AND 384 00:12:15,968 --> 00:12:16,869 WHAT THAT MIGHT DO. 385 00:12:16,936 --> 00:12:18,304 SHE HAD TROUBLE WITH THAT. 386 00:12:18,370 --> 00:12:21,140 SHE ALSO HAD SOME TROUBLE 387 00:12:21,207 --> 00:12:21,774 UNDERSTANDING LONG-TERM 388 00:12:21,841 --> 00:12:25,845 HEADACHES AND THE FACT SHE MIGHT 389 00:12:25,911 --> 00:12:26,846 HAVE AND LP-INDUCED HEADACHE. 390 00:12:26,912 --> 00:12:29,014 WHEN SHE ASKED WHETHER SHE 391 00:12:29,081 --> 00:12:30,216 WANTED TO ENROLL SHE WAS 392 00:12:30,282 --> 00:12:30,549 ENTHUSIASTIC. 393 00:12:30,616 --> 00:12:33,819 I THINK ABOUT THIS CASE AS 394 00:12:33,886 --> 00:12:34,487 WONDERING WHETHER ALZHEIMER'S 395 00:12:34,553 --> 00:12:36,989 DISEASE AFFECTS NOT ONLY YOUR 396 00:12:37,056 --> 00:12:37,690 MEMORY BUT AESTHETIC JUDGMENT 397 00:12:37,756 --> 00:12:41,494 BECAUSE SHE LOOKED ON THE WALLS, 398 00:12:41,560 --> 00:12:45,297 I DON'T KNOW IF WE STILL HAVE 399 00:12:45,364 --> 00:12:46,298 THEM, AESTHETICALLY TERRIBLY 400 00:12:46,365 --> 00:12:55,207 PICTURES OF WAVES CRASHING ON 401 00:12:55,274 --> 00:12:57,710 ON A BEACH AND SHE LOVED IT. 402 00:12:57,776 --> 00:12:59,445 SHE'S COMFORTABLE AND HAPPY TO 403 00:12:59,512 --> 00:13:00,112 PARTICIPATE. 404 00:13:00,179 --> 00:13:02,648 THIS RAISES A NUMBER OF 405 00:13:02,715 --> 00:13:03,115 QUESTIONS. 406 00:13:03,182 --> 00:13:05,684 WHAT DOES RESPECT FOR MS. P 407 00:13:05,751 --> 00:13:05,918 INVOLVE? 408 00:13:05,985 --> 00:13:07,453 AND IN PARTICULAR, WHAT DOES IT 409 00:13:07,520 --> 00:13:09,622 INVOLVE WITH RESPECT TO 410 00:13:09,688 --> 00:13:13,259 ENROLLING HER OR NOT IN THIS 411 00:13:13,325 --> 00:13:14,059 SPECIFIC THREE-WEEK INPATIENT 412 00:13:14,126 --> 00:13:15,661 EVALUATION, AND IF YOU THINK 413 00:13:15,728 --> 00:13:17,730 THAT, WELL, IT MIGHT BE OKAY TO 414 00:13:17,796 --> 00:13:19,265 ENROLL HER, WHAT ARE THE 415 00:13:19,331 --> 00:13:20,366 CONDITIONS YOU THINK THAT SHOULD 416 00:13:20,432 --> 00:13:22,134 BE APPLIED TO MAKE SURE WE'RE 417 00:13:22,201 --> 00:13:23,702 RESPECTING HER BUT DOING IT IN A 418 00:13:23,769 --> 00:13:26,939 WAY AS THE U.N. CONVENTION SAYS 419 00:13:27,006 --> 00:13:28,474 THAT WE'RE ENSURING APPROPRIATE 420 00:13:28,541 --> 00:13:29,575 SAFEGUARDS AND PROTECTIONS. 421 00:13:29,642 --> 00:13:29,909 OKAY. 422 00:13:29,975 --> 00:13:31,443 SO THAT'S THE CASE. 423 00:13:31,510 --> 00:13:33,412 I'M GOING TO BRIEFLY GO THROUGH 424 00:13:33,479 --> 00:13:34,947 WHAT CURRENT GUIDELINES ARE AND 425 00:13:35,014 --> 00:13:38,317 THEN GIVE WHAT I TAKE TO BE THE 426 00:13:38,384 --> 00:13:39,084 SUPPORTED DECISION-MAKING 427 00:13:39,151 --> 00:13:41,287 OBJECTION TO ISN'T OUR 428 00:13:41,353 --> 00:13:41,587 DISCUSSION. 429 00:13:41,654 --> 00:13:44,590 SO, HERE'S BASICALLY -- THERE'S 430 00:13:44,657 --> 00:13:45,391 VARIATION DEPENDING UPON 431 00:13:45,457 --> 00:13:47,626 INSTITUTION, SOME ARE FEDERAL 432 00:13:47,693 --> 00:13:48,961 GUIDELINES, A LOT ARE 433 00:13:49,028 --> 00:13:50,062 INSTITUTIONAL GUIDELINES. 434 00:13:50,129 --> 00:13:51,897 TURNS OUT WE HAVE REASON TO BE 435 00:13:51,964 --> 00:13:52,097 PROUD. 436 00:13:52,164 --> 00:13:53,966 IT MAY BE AS FAR AS I CAN TELL 437 00:13:54,033 --> 00:13:55,301 THAT THE CLINICAL CENTER MIGHT 438 00:13:55,367 --> 00:13:56,835 HAVE BEEN THE FIRST INSTITUTION 439 00:13:56,902 --> 00:14:00,105 IN THE COUNTRY THAT I CAN 440 00:14:00,172 --> 00:14:01,774 IDENTIFY THAT HAD PROTECTIONS 441 00:14:01,840 --> 00:14:02,975 AND REGULATIONS FOR RESEARCH 442 00:14:03,042 --> 00:14:08,347 WITH ADULTS WHO CAN'T GIVE 443 00:14:08,414 --> 00:14:09,982 INFORMED CONSENT STARTING IN 444 00:14:10,049 --> 00:14:10,416 1987. 445 00:14:10,482 --> 00:14:11,517 87-4 INDICATED THE YEAR IT WAS 446 00:14:11,584 --> 00:14:13,052 DEVELOPED, NOW A LONG TIME AGO. 447 00:14:13,118 --> 00:14:15,020 MOST SAY YOU SHOULD ONLY ENROLL 448 00:14:15,087 --> 00:14:16,121 PEOPLE WHO CAN'T CONSENT IF YOU 449 00:14:16,188 --> 00:14:17,523 CAN'T DO THE STUDY WITH PEOPLE 450 00:14:17,590 --> 00:14:17,756 WHO CAN. 451 00:14:17,823 --> 00:14:19,291 IF YOU CAN ANSWER YOUR 452 00:14:19,358 --> 00:14:20,059 SCIENTIFIC QUESTION WITH PEOPLE 453 00:14:20,125 --> 00:14:21,594 WHO CAN, DO IT THAT WAY. 454 00:14:21,660 --> 00:14:26,899 AYE -- IN ADDITION THERE ARE 455 00:14:26,966 --> 00:14:27,833 OTHER PROTECTIONS, PROSPECT OF 456 00:14:27,900 --> 00:14:30,102 BENEFIT, THAT WAS NOT TRUE FOR 457 00:14:30,169 --> 00:14:31,737 MS. P'S STUDY, OR RISKS HAVE TO 458 00:14:31,804 --> 00:14:32,972 BE LOW OR MINIMAL. 459 00:14:33,038 --> 00:14:34,807 WE COULD HAVE A LONG-TERM DEBATE 460 00:14:34,873 --> 00:14:36,108 ABOUT WHAT WE THINK THE LEVEL OF 461 00:14:36,175 --> 00:14:39,278 THE RISKS OF SOMETHING LIKE A 462 00:14:39,345 --> 00:14:40,713 LUMBAR PUNCTURE ARE. 463 00:14:40,779 --> 00:14:42,581 AND THEN ADDITIONALLY AS I 464 00:14:42,648 --> 00:14:43,882 MENTIONED AT THE TOP, THERE 465 00:14:43,949 --> 00:14:46,619 NEEDS TO BE WHAT IN THE FEDERAL 466 00:14:46,685 --> 00:14:47,519 REGULATIONS IS CALLED LEGALLY 467 00:14:47,586 --> 00:14:48,420 AUTHORIZED REPRESENTATIVE. 468 00:14:48,487 --> 00:14:49,488 TYPICALLY THAT'S A SURROGATE. 469 00:14:49,555 --> 00:14:51,457 IF THE PERSON HAS A DURABLE 470 00:14:51,523 --> 00:14:52,758 POWER OF ATTORNEY FOR HEALTH 471 00:14:52,825 --> 00:14:53,959 CARE THAT THEY ASSIGNED 472 00:14:54,026 --> 00:14:55,628 SOMEBODY, THAT'S THE PERSON WHO 473 00:14:55,694 --> 00:14:56,829 FULFILLS THAT ROLE. 474 00:14:56,895 --> 00:14:59,365 IF NOT, WHAT MOST PLACES DO, 475 00:14:59,431 --> 00:15:00,566 INCLUDING THE CLINICAL CENTER, 476 00:15:00,633 --> 00:15:03,502 IS WE RELY ON A HIERARCHY OF 477 00:15:03,569 --> 00:15:04,937 NEXT OF KIN SURROGATES TO HELP 478 00:15:05,004 --> 00:15:07,206 MAKE DECISIONS FOR THE PATIENT. 479 00:15:07,273 --> 00:15:08,340 ALSO, THE PATIENT ISN'T SUPPOSED 480 00:15:08,407 --> 00:15:10,542 TO BE LEFT OUT COMPLETELY. 481 00:15:10,609 --> 00:15:12,177 THERE ARE WORRIES TO WHAT EXTENT 482 00:15:12,244 --> 00:15:13,612 THAT ACTUALLY HAPPENS IN 483 00:15:13,679 --> 00:15:13,979 PRACTICE. 484 00:15:14,046 --> 00:15:15,881 BUT IN THEORY AT LEAST YOU'RE 485 00:15:15,948 --> 00:15:17,983 STILL SUPPOSED TO INVOLVE THE 486 00:15:18,050 --> 00:15:20,052 PATIENT IN TERMS OF EXPLAINING 487 00:15:20,119 --> 00:15:21,720 THE STUDY TO THEM, TO THE EXTENT 488 00:15:21,787 --> 00:15:23,455 THEY CAN UNDERSTAND IT, GETTING 489 00:15:23,522 --> 00:15:25,991 THEIR AGREEMENT WHICH IN THE 490 00:15:26,058 --> 00:15:28,060 LITERATURE IS CALLED ASSENT, IF 491 00:15:28,127 --> 00:15:29,395 THEY HAVE OBJECTIONS OR CONCERNS 492 00:15:29,461 --> 00:15:32,031 THOSE ARE SUPPOSED TO BE TAKEN 493 00:15:32,097 --> 00:15:33,265 SERIOUSLY. 494 00:15:33,332 --> 00:15:34,533 THAT'S TYPICALLY TERMED DISSENT. 495 00:15:34,600 --> 00:15:36,302 SO THAT'S STANDARD PRACTICE. 496 00:15:36,368 --> 00:15:38,137 WHAT'S THE WORRY ABOUT THAT? 497 00:15:38,203 --> 00:15:40,239 THAT SEEMS PRETTY GOOD TO ME AT 498 00:15:40,306 --> 00:15:40,539 LEAST. 499 00:15:40,606 --> 00:15:42,441 WHAT'S THE WORRY ABOUT THAT? 500 00:15:42,508 --> 00:15:43,842 SO, HERE'S THE WAY THIS WORKS. 501 00:15:43,909 --> 00:15:44,410 ALL RIGHT. 502 00:15:44,476 --> 00:15:46,612 SO, THE WAY IT WORKS UNDER 503 00:15:46,679 --> 00:15:48,314 CURRENT PRACTICE IS THAT IN 504 00:15:48,380 --> 00:15:49,548 ORDER TO DECIDE FOR YOURSELF, IN 505 00:15:49,615 --> 00:15:52,084 ORDER FOR MS. P TO MAKE HER OWN 506 00:15:52,151 --> 00:15:52,818 DECISION, STANDARD PRACTICE SAYS 507 00:15:52,885 --> 00:15:54,820 SHE'S GOT TO HAVE A CERTAIN 508 00:15:54,887 --> 00:15:56,355 NUMBER OF ABILITIES, ABLE TO DO 509 00:15:56,422 --> 00:15:57,756 CERTAIN THINGS LIKE UNDERSTAND 510 00:15:57,823 --> 00:16:00,826 THE STUDY, REASON ABOUT THE 511 00:16:00,893 --> 00:16:03,228 STUDY, BALANCE OF RISKS AND 512 00:16:03,295 --> 00:16:03,896 BENEFITS, MAKE A VOLUNTARY 513 00:16:03,962 --> 00:16:05,664 DECISION ABOUT IT. 514 00:16:05,731 --> 00:16:06,799 HERE IS THE CRITICAL POINT, 515 00:16:06,865 --> 00:16:09,935 WHICH IS ALL OF THOSE ABILITIES, 516 00:16:10,002 --> 00:16:10,836 ABILITY TO UNDERSTAND, ABILITY 517 00:16:10,903 --> 00:16:12,137 TO REASON, THEY ALL COME IN 518 00:16:12,204 --> 00:16:12,504 DEGREES. 519 00:16:12,571 --> 00:16:14,106 YOU CAN BE BETTER OR WORSE AT 520 00:16:14,173 --> 00:16:14,973 THOSE THINGS. 521 00:16:15,040 --> 00:16:16,408 MY MEMORY IS OKAY. 522 00:16:16,475 --> 00:16:18,711 SOME PEOPLE'S MEMORY IS BETTER. 523 00:16:18,777 --> 00:16:20,446 SOME PEOPLE'S MEMORY IS REALLY 524 00:16:20,512 --> 00:16:21,347 GOOD. 525 00:16:21,413 --> 00:16:23,048 YOU'VE GOT THIS GRADATION OF THE 526 00:16:23,115 --> 00:16:26,085 EXTENT TO WHICH PEOPLE HAVE THE 527 00:16:26,151 --> 00:16:27,886 NECESSARY ABILITIES, THAT RAISES 528 00:16:27,953 --> 00:16:32,958 THE QUESTION, OKAY, WHO GETS TO 529 00:16:33,025 --> 00:16:35,728 CONSENT FOR THEMSELVES HOW WHO 530 00:16:35,794 --> 00:16:36,328 DOESN'T? 531 00:16:36,395 --> 00:16:39,164 HOW DO YOU DISTINGUISH BASED ON 532 00:16:39,231 --> 00:16:39,398 DEGREES. 533 00:16:39,465 --> 00:16:40,299 CURRENT STANDARD, IF YOU 534 00:16:40,366 --> 00:16:41,100 UNDERSTAND ENOUGH, ABOUT A 535 00:16:41,166 --> 00:16:43,469 QUARTER TO A THIRD OF CONSULTS 536 00:16:43,535 --> 00:16:44,336 ARE CAPACITY ASSESSMENTS WHERE 537 00:16:44,403 --> 00:16:45,771 WE GO AND TALK TO SOMEBODY, AND 538 00:16:45,838 --> 00:16:47,973 WE'RE TRYING TO FIGURE OUT DO 539 00:16:48,040 --> 00:16:49,174 THEY UNDERSTAND ENOUGH, SO WHEN 540 00:16:49,241 --> 00:16:51,243 I TALKED TO MS. P, THERE'S JUST 541 00:16:51,310 --> 00:16:51,910 NO WAY. 542 00:16:51,977 --> 00:16:53,779 SHE UNDERSTANDS A LOT BUT NO WAY 543 00:16:53,846 --> 00:16:55,180 SHE UNDERSTANDS ENOUGH, I 544 00:16:55,247 --> 00:16:57,282 THOUGHT, TO GIVE CONSENT FOR 545 00:16:57,349 --> 00:16:57,616 HERSELF. 546 00:16:57,683 --> 00:17:01,553 AND IF YOU MAKE THAT 547 00:17:01,620 --> 00:17:02,654 DETERMINATION BELOW THOSE 548 00:17:02,721 --> 00:17:03,756 THRESHOLDS PROTECTIONS I 549 00:17:03,822 --> 00:17:05,057 MENTIONED KICK IN LIKE THERE HAS 550 00:17:05,124 --> 00:17:06,825 TO BE A SURROGATE WHO MAKES 551 00:17:06,892 --> 00:17:08,327 DECISIONS, AT LEAST WITH YOU, IF 552 00:17:08,394 --> 00:17:10,129 NOT FOR YOU. 553 00:17:10,195 --> 00:17:12,664 SO, THIS IS MY ATTEMPT AT GRAPH. 554 00:17:12,731 --> 00:17:13,732 I'M TERRIBLE AT THIS. 555 00:17:13,799 --> 00:17:15,067 THESE ARE THE REQUIREMENTS ON 556 00:17:15,134 --> 00:17:16,034 THE STANDARD VIEW. 557 00:17:16,101 --> 00:17:17,269 AS YOU GO UP YOU'RE GETTING 558 00:17:17,336 --> 00:17:18,370 BETTER AT THEM. 559 00:17:18,437 --> 00:17:20,973 DARKER MORE FILLED IN IS BETTER. 560 00:17:21,039 --> 00:17:22,074 AND THEN EVERYBODY'S GOING TO 561 00:17:22,141 --> 00:17:24,042 FALL AT SOME POINT ON EACH ONE 562 00:17:24,109 --> 00:17:25,043 OF THESE. 563 00:17:25,110 --> 00:17:26,445 THEN THE QUESTION IS JUST WHERE 564 00:17:26,512 --> 00:17:28,547 DO YOU DRAW THE LINES BELOW 565 00:17:28,614 --> 00:17:30,949 WHICH YOU NEED A SURROGATE AND 566 00:17:31,016 --> 00:17:33,485 ABOVE WHICH YOU CAN CONSENT FOR 567 00:17:33,552 --> 00:17:33,919 YOURSELF? 568 00:17:33,986 --> 00:17:35,554 THAT'S THE CHALLENGE THAT 569 00:17:35,621 --> 00:17:37,623 CURRENT PRACTICE FACES, AND THE 570 00:17:37,689 --> 00:17:39,057 OBJECTION IS JUST WHERE YOU DRAW 571 00:17:39,124 --> 00:17:41,460 THE LINE YOU'RE JUST MAKING IT 572 00:17:41,527 --> 00:17:41,627 UP. 573 00:17:41,693 --> 00:17:41,994 IT'S ARBITRARY. 574 00:17:42,060 --> 00:17:43,796 HOW DO YOU DECIDE THERE, DAVE, 575 00:17:43,862 --> 00:17:44,663 AND NOT UP OR LOW? 576 00:17:44,730 --> 00:17:46,198 HOW DO YOU FIGURE OUT WHERE TO 577 00:17:46,265 --> 00:17:46,965 PUT IT? 578 00:17:47,032 --> 00:17:49,168 IT SEEMS LIKE, AT LEAST THE 579 00:17:49,234 --> 00:17:51,136 OBJECTION GOES, THAT THAT'S AN 580 00:17:51,203 --> 00:17:54,106 ARBITRARY WAY TO MAKE THESE 581 00:17:54,173 --> 00:17:54,473 DETERMINATIONS. 582 00:17:54,540 --> 00:17:56,041 MOREOVER, NOT ONLY MAYBE DO YOU 583 00:17:56,108 --> 00:17:57,242 THINK IT'S ARBITRARY BUT THE 584 00:17:57,309 --> 00:17:59,011 OTHER OBJECTION IS THAT PEOPLE 585 00:17:59,077 --> 00:18:02,314 WHO IN ALL BELOW ARE OFTEN GOING 586 00:18:02,381 --> 00:18:05,384 TO BE PEOPLE WITH INTELLECTUAL 587 00:18:05,451 --> 00:18:06,084 OR COGNITIVE IMPAIRMENT AND 588 00:18:06,151 --> 00:18:07,453 THAT'S WHY THEY ARE NOT 589 00:18:07,519 --> 00:18:08,053 UNDERSTANDING FOR INSTANCE AS 590 00:18:08,120 --> 00:18:08,787 MUCH. 591 00:18:08,854 --> 00:18:10,856 WE PUT OTHER PROTECTIONS LIKE TO 592 00:18:10,923 --> 00:18:12,057 HAVE SOMEBODY ELSE MAKE THE 593 00:18:12,124 --> 00:18:14,126 DECISION FOR THEM, THE WORRY IS 594 00:18:14,193 --> 00:18:16,228 THAT SEEMS LIKE IT'S POTENTIALLY 595 00:18:16,295 --> 00:18:17,963 DISCRIMINATION AGAINST PEOPLE 596 00:18:18,030 --> 00:18:19,731 WITH CERTAIN DISABILITIES, 597 00:18:19,798 --> 00:18:21,033 NAMELY INTELLECTUAL AND 598 00:18:21,099 --> 00:18:21,767 COGNITIVE DISABILITY. 599 00:18:21,834 --> 00:18:23,435 THE CHALLENGE FOR US TO DISCUSS, 600 00:18:23,502 --> 00:18:25,437 IS THERE A WAY TO TRY TO TAKE 601 00:18:25,504 --> 00:18:28,407 SOME OF THE INSIGHTS FROM 602 00:18:28,474 --> 00:18:30,042 SUPPORTED DECISION MAKING TO 603 00:18:30,108 --> 00:18:31,877 REVISE OR SUPPLEMENT CURRENT 604 00:18:31,944 --> 00:18:33,979 PRACTICE TO BETTER RESPECT 605 00:18:34,046 --> 00:18:36,048 INDIVIDUALS WITH COGNITIVE AND 606 00:18:36,114 --> 00:18:36,715 INTELLECTUAL DISABILITY. 607 00:18:36,782 --> 00:18:39,318 IS THERE A WAY TO ENSURE THEY 608 00:18:39,384 --> 00:18:40,752 DON'T GET RELEGATED TO THE 609 00:18:40,819 --> 00:18:41,720 SECONDARY ROLE WHERE THE 610 00:18:41,787 --> 00:18:44,256 SURROGATE IS MAKING ALL THE 611 00:18:44,323 --> 00:18:44,923 DECISIONS, ALL THE 612 00:18:44,990 --> 00:18:45,791 COMMUNICATIONS GO THROUGH THE 613 00:18:45,858 --> 00:18:48,961 SURROGATE AND THE PATIENT 614 00:18:49,027 --> 00:18:49,928 THEMSELVES ISN'T REALLY 615 00:18:49,995 --> 00:18:50,262 INVOLVED. 616 00:18:50,329 --> 00:18:53,098 SO I'M GOING TO DESCRIBE THEY 617 00:18:53,165 --> 00:18:54,433 POSSIBLE APPROACHES THAT OUR 618 00:18:54,500 --> 00:18:56,401 DISCUSSANT WILL TELL US WHAT SHE 619 00:18:56,468 --> 00:18:58,704 THINKS AND THIS IS FROM, I 620 00:18:58,770 --> 00:19:00,205 MENTIONED, THE PAPER SCOTT AND I 621 00:19:00,272 --> 00:19:01,306 WORKED ON. 622 00:19:01,373 --> 00:19:02,508 HERE'S ONE POSSIBILITY. 623 00:19:02,574 --> 00:19:04,710 HERE'S WHAT YOU COULD DO IS 624 00:19:04,776 --> 00:19:06,078 SOMETIMES WHEN PEOPLE DON'T 625 00:19:06,144 --> 00:19:08,247 UNDERSTAND ENOUGH, IT'S NOT THAT 626 00:19:08,313 --> 00:19:11,083 THEY CAN'T, SOMETHING IS GOING 627 00:19:11,149 --> 00:19:12,084 ON, THEY ARE DISTRACTED, TIRED, 628 00:19:12,150 --> 00:19:12,484 DEPRESSED. 629 00:19:12,551 --> 00:19:14,086 YOU SPOKE IN A LANGUAGE THEY 630 00:19:14,152 --> 00:19:14,853 DIDN'T UNDERSTAND. 631 00:19:14,920 --> 00:19:16,355 IT WAS TOO TECHNICAL. 632 00:19:16,421 --> 00:19:17,656 SO THE THOUGHT AT LEAST 633 00:19:17,723 --> 00:19:18,857 INITIALLY WHAT WE SHOULD BE 634 00:19:18,924 --> 00:19:20,859 DOING IS TRYING TO ENABLE 635 00:19:20,926 --> 00:19:22,261 EVERYBODY TO BE IN THE BEST 636 00:19:22,327 --> 00:19:24,329 POSITION THEY CAN BE TO MAKE A 637 00:19:24,396 --> 00:19:26,532 DECISION FOR THEMSELVES. 638 00:19:26,598 --> 00:19:27,933 SO SUPPORT THEM, SO SUPPORTED 639 00:19:28,000 --> 00:19:29,601 DECISION MAKING HERE IS JUST 640 00:19:29,668 --> 00:19:32,004 TRYING TO SUPPORT THEM TO TRY TO 641 00:19:32,070 --> 00:19:33,338 MAKE THEIR OWN DECISIONS. 642 00:19:33,405 --> 00:19:34,540 UNDERSTANDING, MAKE IT CLEAR, 643 00:19:34,606 --> 00:19:36,508 EXPLAIN IT AGAIN, LET THEM TALK 644 00:19:36,575 --> 00:19:37,609 TO THEIR DOCTOR, FAMILY, COME 645 00:19:37,676 --> 00:19:38,810 BACK, TRY AGAIN. 646 00:19:38,877 --> 00:19:41,346 SO DO THINGS THAT YOU CAN TO TRY 647 00:19:41,413 --> 00:19:44,816 TO ENABLE THEM TO MAKE DECISIONS 648 00:19:44,883 --> 00:19:46,084 GIVEN THE ABILITIES THAT THEY 649 00:19:46,151 --> 00:19:46,285 HAVE. 650 00:19:46,351 --> 00:19:48,020 SO I TAKE IT MAYBE SOMEBODY HAS 651 00:19:48,086 --> 00:19:50,622 A DIFFERENT VIEW BUT SEEMS TO ME 652 00:19:50,689 --> 00:19:51,290 THIS IS COMPLETELY 653 00:19:51,356 --> 00:19:52,491 OBJECTIONABLE, WE SHOULD BE 654 00:19:52,558 --> 00:19:55,027 DOING THIS, TO A LARGE EXTENT WE 655 00:19:55,093 --> 00:19:56,528 ALREADY DO, PROBABLY WE SHOULD 656 00:19:56,595 --> 00:19:58,730 BE GETTING BETTER AT IT 657 00:19:58,797 --> 00:20:00,832 PARTICULARLY WITH PEOPLE WITH 658 00:20:00,899 --> 00:20:01,366 INTELLECTUAL AND COGNITIVE 659 00:20:01,433 --> 00:20:04,736 ABILITIES BUT THIS IS SOMETHING 660 00:20:04,803 --> 00:20:08,040 WE SHOULD ALL BE DOING FOR EVERY 661 00:20:08,106 --> 00:20:09,041 PATIENT, EVERY PARTICIPANT IN 662 00:20:09,107 --> 00:20:10,509 THE CLINICAL CENTER AND ANYWHERE 663 00:20:10,576 --> 00:20:11,443 ELSE CLINICAL RESEARCH IS GOING 664 00:20:11,510 --> 00:20:11,610 ON. 665 00:20:11,677 --> 00:20:13,512 SO TRY TO DO THIS, MAYBE DO IT 666 00:20:13,579 --> 00:20:13,979 BETTER. 667 00:20:14,046 --> 00:20:15,280 LET'S FIGURE THIS OUT. 668 00:20:15,347 --> 00:20:17,683 CERTAINLY THIS IS ONE PART OF 669 00:20:17,749 --> 00:20:19,017 WHAT WE WANT TO BE DOING. 670 00:20:19,084 --> 00:20:21,653 ANOTHER IS A MORE EXTREME VIEW, 671 00:20:21,720 --> 00:20:24,156 WHICH IS TO SAY TAKE 672 00:20:24,222 --> 00:20:25,591 DISCRIMINATION CLAIM CLEARLY AND 673 00:20:25,657 --> 00:20:27,993 SAY THE IMPLICATION IS WE 674 00:20:28,060 --> 00:20:29,328 SHOULDN'T PUT THESE RESTRICTIONS 675 00:20:29,394 --> 00:20:30,796 ON ANYBODY. 676 00:20:30,862 --> 00:20:32,497 EVERYTHING GETS TO DECIDE FOR 677 00:20:32,564 --> 00:20:33,231 THEMSELVES. 678 00:20:33,298 --> 00:20:34,666 REMEMBER THE FIRST PART OF 679 00:20:34,733 --> 00:20:41,139 ARTICLE 1, ALL ADULTS, NO MATTER 680 00:20:41,206 --> 00:20:42,107 FUNCTION OR DISABILITY HAVE A 681 00:20:42,174 --> 00:20:44,209 RIGHT TO MAKE THOSE DECISIONS 682 00:20:44,276 --> 00:20:46,511 FOR THEMSELVES. 683 00:20:46,578 --> 00:20:48,480 SO THIS SAYS EVERYBODY GETS -- 684 00:20:48,547 --> 00:20:50,415 EXPLAIN TO THE EXTENT THEY 685 00:20:50,482 --> 00:20:51,750 UNDERSTAND AND THEY GET TO MAKE 686 00:20:51,817 --> 00:20:53,285 DECISIONS FOR THEMSELVES. 687 00:20:53,352 --> 00:20:54,586 OTHER CAN SUPPORT THEM, HELP 688 00:20:54,653 --> 00:20:56,989 THEM, BUT NOT MAKE DECISIONS FOR 689 00:20:57,055 --> 00:20:57,356 THEM. 690 00:20:57,422 --> 00:20:59,524 EVERYBODY GETS TO DECIDE. 691 00:20:59,591 --> 00:21:01,159 OBVIOUSLY I THINK WHAT YOU THINK 692 00:21:01,226 --> 00:21:03,462 ABOUT THIS, THERE'S AT LEAST 693 00:21:03,528 --> 00:21:05,998 SOME VALUE, LIKE IT REALLY DOES 694 00:21:06,064 --> 00:21:07,666 ENSURE DIGNITY AND RESPECT OF 695 00:21:07,733 --> 00:21:11,603 EVERYBODY, NO MATTER WHAT THEIR 696 00:21:11,670 --> 00:21:13,905 POTENTIAL DISABILITIES OR 697 00:21:13,972 --> 00:21:15,107 COGNITIVE FUNCTION MIGHT BE. 698 00:21:15,173 --> 00:21:17,409 WHAT'S THE WORRY? 699 00:21:17,476 --> 00:21:20,712 THE WORRY IS MS. P, IF WE SAID, 700 00:21:20,779 --> 00:21:23,081 YEAH, WE CAN SUPPORT MS. P BUT 701 00:21:23,148 --> 00:21:24,282 SHE GETS TO DECIDE FOR HERSELF 702 00:21:24,349 --> 00:21:26,084 AND WE CAN OFFER RECOMMENDATIONS 703 00:21:26,151 --> 00:21:27,919 AND ADVICE BUT SHE GETS TO 704 00:21:27,986 --> 00:21:29,755 DECIDE IN THE END, MY WORRY IS 705 00:21:29,821 --> 00:21:31,823 SOMEBODY LIKE MS. P WOULD ENROLL 706 00:21:31,890 --> 00:21:33,058 IN ANY RESEARCH STUDY ANYBODY 707 00:21:33,125 --> 00:21:34,459 OFFERED IF THEY WERE NICE AND 708 00:21:34,526 --> 00:21:35,661 HAD NICE PICTURES THE ON THE 709 00:21:35,727 --> 00:21:38,530 WALL, IT COULD HAVE BEEN AN MRI, 710 00:21:38,597 --> 00:21:41,366 AN LP, A BRAIN BIOPSY AND SHE 711 00:21:41,433 --> 00:21:45,203 WOULD HAVE GONE FOR IT. 712 00:21:45,270 --> 00:21:46,605 PRESUMABLY MAYBE IT'S FOR HER 713 00:21:46,672 --> 00:21:48,607 BUT DOESN'T SEEM LIKE ADEQUATE 714 00:21:48,674 --> 00:21:49,574 PROTECTION FOR HER INTEREST. 715 00:21:49,641 --> 00:21:54,046 THAT SEEMS LIKE A SERIOUS 716 00:21:54,112 --> 00:21:54,279 PROBLEM. 717 00:21:54,346 --> 00:21:55,580 THIRD OPTION, SO FIRST OPTION WE 718 00:21:55,647 --> 00:21:57,549 SHOULD ALL BE DOING, SECOND 719 00:21:57,616 --> 00:21:59,618 STRIKES ME AT LEAST WE SHOULDN'T 720 00:21:59,685 --> 00:22:01,253 BE DOING AT ALL, THIRD IS WHAT 721 00:22:01,319 --> 00:22:04,556 SCOTT AND I CALL PROMOTING 722 00:22:04,623 --> 00:22:05,424 AUTHENTICITY. 723 00:22:05,490 --> 00:22:08,627 THE IDEA HERE IS TO TRY TO THINK 724 00:22:08,694 --> 00:22:10,896 ABOUT WAYS THAT WE CAN INCREASE 725 00:22:10,962 --> 00:22:12,898 THE EXTENT TO WHICH THE 726 00:22:12,964 --> 00:22:14,332 DECISIONS WE MAKE ABOUT 727 00:22:14,399 --> 00:22:15,100 ENROLLING INDIVIDUALS IN 728 00:22:15,167 --> 00:22:16,635 RESEARCH ARE CONSISTENT WITH 729 00:22:16,702 --> 00:22:17,736 THEIR OWN VALUES. 730 00:22:17,803 --> 00:22:20,005 EVEN IF THEY CAN'T UNDERSTAND 731 00:22:20,072 --> 00:22:22,240 THE STUDY, EVEN IF THEY MIGHT 732 00:22:22,307 --> 00:22:26,078 NOT FULLY REMEMBER, CAN WE HELP 733 00:22:26,144 --> 00:22:28,046 THEM TO MAKE DECISIONS THAT ARE 734 00:22:28,113 --> 00:22:29,881 IN MORE ACCORD WITH THEIR VALUE, 735 00:22:29,948 --> 00:22:31,550 HAVING THEM ENROLL IN STUDIES 736 00:22:31,616 --> 00:22:32,851 CONSIST WENT PROMOTING THEIR 737 00:22:32,918 --> 00:22:34,720 ENDS AND VALUES AND KEEPING THEM 738 00:22:34,786 --> 00:22:38,056 OUT OF STUDIES WHICH DON'T. 739 00:22:38,123 --> 00:22:41,293 SO, THAT'S SORT OF THE GOAL FOR 740 00:22:41,359 --> 00:22:41,626 THIS. 741 00:22:41,693 --> 00:22:44,496 AND SO WHAT WE'RE GOING TO ASK 742 00:22:44,563 --> 00:22:46,998 IS THINGS LIKE THIS IS THE END 743 00:22:47,065 --> 00:22:48,266 OF THE THIRD BULLET, DOES 744 00:22:48,333 --> 00:22:51,803 ENROLLMENT A ACCORD WITH THE 745 00:22:51,870 --> 00:22:52,671 INDIVIDUAL'S VALUES, THAT'S WHAT 746 00:22:52,738 --> 00:22:54,005 SUPPORT IS SUPPOSED TO BE DOING, 747 00:22:54,072 --> 00:22:55,307 HELPING MAKE THE DECISION. 748 00:22:55,373 --> 00:22:56,608 WHEN THE ANSWER IS YES THAT'S A 749 00:22:56,675 --> 00:22:57,809 GOOD REASON TO ENROLL THEM. 750 00:22:57,876 --> 00:23:00,011 WHEN THE ANSWER IS NO, THAT'S A 751 00:23:00,078 --> 00:23:01,880 REASON NOT TO ENROLL THEM. 752 00:23:01,947 --> 00:23:03,715 SO, THIS IS DIFFERENT. 753 00:23:03,782 --> 00:23:05,150 I'LL POINT OUT WHO WAYS IN 754 00:23:05,217 --> 00:23:06,485 CURRENT PRACTICE. 755 00:23:06,551 --> 00:23:08,220 CURRENT PRACTICE BASICALLY IS IF 756 00:23:08,286 --> 00:23:10,822 THE STUDY IS MINIMAL RISK, MAYBE 757 00:23:10,889 --> 00:23:12,257 MINOR INCREASE OVER MINIMAL 758 00:23:12,324 --> 00:23:14,226 RISK, THE PERSON DOESN'T OBJECT 759 00:23:14,292 --> 00:23:16,428 AND SURROGATE SAYS YES, THEY CAN 760 00:23:16,495 --> 00:23:17,395 BE ENROLLED. 761 00:23:17,462 --> 00:23:18,930 EVEN IF IT'S INCONSISTENT WITH 762 00:23:18,997 --> 00:23:20,565 THEIR VALUES, MAYBE THEY DON'T 763 00:23:20,632 --> 00:23:22,100 REALIZE IT BECAUSE THEY DON'T 764 00:23:22,167 --> 00:23:23,969 UNDERSTAND A STUDY LIKE MS. P 765 00:23:24,035 --> 00:23:25,203 DOES, ON THIS PROPOSALS IF 766 00:23:25,270 --> 00:23:27,172 THERE'S GOOD REASON TO THINK 767 00:23:27,239 --> 00:23:28,673 IT'S INCONSISTENT WITH THEIR 768 00:23:28,740 --> 00:23:29,574 VALUES WE WOULDN'T ENROLL THEM 769 00:23:29,641 --> 00:23:31,076 EVEN IF IT'S A BENEFICIAL STUDY 770 00:23:31,143 --> 00:23:33,311 OR EVEN IF IT'S A VERY LOW RISK 771 00:23:33,378 --> 00:23:34,813 STUDY. 772 00:23:34,880 --> 00:23:36,448 ON THE OTHER HAND, WHAT THIS 773 00:23:36,515 --> 00:23:39,618 PROPOSAL WOULD DO, COULD ALLOW 774 00:23:39,684 --> 00:23:40,619 POTENTIALLY SIGNIFICANTLY 775 00:23:40,685 --> 00:23:41,920 GREATER RISKS IF YOU HAVE GOOD 776 00:23:41,987 --> 00:23:44,556 REASON TO BELIEVE BEING IN THAT 777 00:23:44,623 --> 00:23:48,193 PARTICULAR STUDY IS CONSISTENT 778 00:23:48,260 --> 00:23:50,028 WITH THE PERSON'S VALUES. 779 00:23:50,095 --> 00:23:50,228 OKAY. 780 00:23:50,295 --> 00:23:53,031 SO, THAT'S JUST A BRIEF SUMMARY 781 00:23:53,098 --> 00:23:55,433 THE THREE PROPOSALS THAT WE 782 00:23:55,500 --> 00:23:56,334 MADE, BRIEFLY SAYING ENHANCING, 783 00:23:56,401 --> 00:23:59,805 WE SHOULD BE DOING ALL THE TIME. 784 00:23:59,871 --> 00:24:00,572 REJECTING LIMITATIONS I THINK 785 00:24:00,639 --> 00:24:02,974 GOES TOO FAR. 786 00:24:03,041 --> 00:24:04,042 PROMOTING AUTHENTICITY AT LEAST 787 00:24:04,109 --> 00:24:05,944 TO ME AND STILL TO SCOTT 788 00:24:06,011 --> 00:24:06,812 HOPEFULLY SEEMS LIKE MAYBE A 789 00:24:06,878 --> 00:24:08,246 GOOD WAY TO TRY TO SUPPLEMENT 790 00:24:08,313 --> 00:24:09,414 CURRENT PRACTICE. 791 00:24:09,481 --> 00:24:09,781 OKAY. 792 00:24:09,848 --> 00:24:11,416 SO THAT'S MY CLAIM. 793 00:24:11,483 --> 00:24:13,852 AND NOW TO GIVE US SOME THOUGHTS 794 00:24:13,919 --> 00:24:16,354 ON THIS, AS I MENTIONED, 795 00:24:16,421 --> 00:24:17,889 SUPPORTED DECISION MAKING IS 796 00:24:17,956 --> 00:24:20,058 VERY POPULAR AND A LOT DISCUSSED 797 00:24:20,125 --> 00:24:20,325 IN EUROPE. 798 00:24:20,392 --> 00:24:22,060 IT'S JUST MUCH MORE NASCENT IN 799 00:24:22,127 --> 00:24:22,727 THE UNITED STATES. 800 00:24:22,794 --> 00:24:24,129 THERE ARE VERY FEW PEOPLE WHO 801 00:24:24,196 --> 00:24:25,564 HAVE BEEN THINKING ABOUT IT TOO 802 00:24:25,630 --> 00:24:25,797 MUCH. 803 00:24:25,864 --> 00:24:27,532 THAT MAKES IT HARD FOR US TO 804 00:24:27,599 --> 00:24:29,734 THINK ABOUT SPECIFICALLY HOW TO 805 00:24:29,801 --> 00:24:30,635 APPLY TO RESEARCH. 806 00:24:30,702 --> 00:24:32,671 FORTUNATELY WE HAVE TODAY ONE OF 807 00:24:32,737 --> 00:24:33,872 THE PEOPLE THINKING AND WRITING 808 00:24:33,939 --> 00:24:36,007 ABOUT THIS FOR A WHILE. 809 00:24:36,074 --> 00:24:39,811 NINA KOHN IS A LAWYER, AT 810 00:24:39,878 --> 00:24:42,013 SYRACUSE UNIVERSITY, SHE IS THE 811 00:24:42,080 --> 00:24:45,283 DAVID M LEVY PROFESSOR OF LAW AT 812 00:24:45,350 --> 00:24:46,718 SYRACUSE, ALSO A DISTINGUISHED 813 00:24:46,785 --> 00:24:48,353 SCHOLAR AT YALE, HERE TO HELP US 814 00:24:48,420 --> 00:24:49,988 THINK THROUGH THESE ISSUES. 815 00:24:50,055 --> 00:24:51,957 WELCOME, NINA. 816 00:24:52,023 --> 00:24:54,059 >> GAD TO BE HERE. 817 00:24:54,125 --> 00:24:59,631 [APPLAUSE] 818 00:24:59,698 --> 00:25:04,870 I'LL LOWER THESE. 819 00:25:04,936 --> 00:25:05,070 OKAY. 820 00:25:05,136 --> 00:25:06,838 WELL, I AM DELIGHTED TO BE HERE 821 00:25:06,905 --> 00:25:07,272 TODAY. 822 00:25:07,339 --> 00:25:10,141 AS I THINK WE KNOW, RESEARCH 823 00:25:10,208 --> 00:25:12,978 SHOWS THAT INDIVIDUALS WITH 824 00:25:13,044 --> 00:25:15,981 DISABILITIES ARE OFTEN EXCLUDED 825 00:25:16,047 --> 00:25:18,350 FROM RESEARCH PARTICIPATION 826 00:25:18,416 --> 00:25:20,719 BASED ON STEREOTYPE. 827 00:25:20,785 --> 00:25:22,254 AND SUPPORTED DECISION MAKING 828 00:25:22,320 --> 00:25:24,789 REALLY HAS POTENTIAL I THINK TO 829 00:25:24,856 --> 00:25:26,424 HELP RESEARCH BE MORE INCLUSIVE. 830 00:25:26,491 --> 00:25:30,028 SO THAT WE CAN GENERATE A 831 00:25:30,095 --> 00:25:32,564 KNOWLEDGE BASE ABOUT WHAT WORKS 832 00:25:32,631 --> 00:25:35,066 FOR VULNERABLE POPULATIONS WITH 833 00:25:35,133 --> 00:25:38,036 COGNITIVE AND INTELLECTUAL 834 00:25:38,103 --> 00:25:38,803 DISABILITIES. 835 00:25:38,870 --> 00:25:40,972 SO, I'M ABSOLUTELY DELIGHTED 836 00:25:41,039 --> 00:25:42,941 THAT DAVE AND NIH IS FOSTERING 837 00:25:43,008 --> 00:25:44,476 THIS DISCUSSION TODAY. 838 00:25:44,542 --> 00:25:45,810 JUST A FEW PRELIMINARIES. 839 00:25:45,877 --> 00:25:48,079 AS WE GET STARTED, I DON'T HAVE 840 00:25:48,146 --> 00:25:49,614 ANY CONFLICTS OF INTEREST WITH 841 00:25:49,681 --> 00:25:50,615 REGARD TO THIS. 842 00:25:50,682 --> 00:25:53,485 AND THE KEY LEARNING OBJECTIVES 843 00:25:53,551 --> 00:25:56,655 FOR MY PORTION ARE CURRENTLY ON 844 00:25:56,721 --> 00:25:57,756 THE SCREEN. 845 00:25:57,822 --> 00:25:59,057 AND FINALLY, I DO WANT TO SAY 846 00:25:59,124 --> 00:26:01,893 THANK YOU VERY MUCH, PROFESSOR 847 00:26:01,960 --> 00:26:02,794 WENDLER, AND NIH FOR INVITING ME 848 00:26:02,861 --> 00:26:05,964 AND THANK YOU ALL FOR BEING HERE 849 00:26:06,031 --> 00:26:07,165 TODAY AS WELL. 850 00:26:07,232 --> 00:26:09,601 SO, I WANT TO START OFF MY 851 00:26:09,668 --> 00:26:10,936 PORTION OF THE CONVERSATION BY 852 00:26:11,002 --> 00:26:13,972 TALKING A LITTLE BIT MORE ABOUT 853 00:26:14,039 --> 00:26:17,709 WHAT WE MEAN BY DECISIONAL 854 00:26:17,776 --> 00:26:18,443 CAPACITY. 855 00:26:18,510 --> 00:26:23,181 SO, WHEN WE THINK ABOUT CAPACITY 856 00:26:23,248 --> 00:26:25,283 TO CONSENT TO RESEARCH, IT'S 857 00:26:25,350 --> 00:26:26,918 REALLY A TWO-PART INQUIRY. 858 00:26:26,985 --> 00:26:29,654 NOW, WHAT DAVE HAS DISCUSSED FOR 859 00:26:29,721 --> 00:26:31,623 US ARE RESEARCH GUIDELINES WHEN 860 00:26:31,690 --> 00:26:32,924 TALKING ABOUT CONSENT TO 861 00:26:32,991 --> 00:26:35,126 RESEARCH, AND THE FRAMEWORK FOR 862 00:26:35,193 --> 00:26:35,360 THAT. 863 00:26:35,427 --> 00:26:38,763 BUT WHEN WE'RE TALKING ABOUT 864 00:26:38,830 --> 00:26:40,298 RESEARCH THAT INVOLVES MEDICAL 865 00:26:40,365 --> 00:26:41,599 INTERVENTION, IT'S IMPORTANT TO 866 00:26:41,666 --> 00:26:45,303 RECOGNIZE THAT WE ALSO NEED THE 867 00:26:45,370 --> 00:26:46,738 CONSENT TO THAT INTERVENTION. 868 00:26:46,805 --> 00:26:50,075 AND WHAT CONSENT LOOKS LIKE TO 869 00:26:50,141 --> 00:26:51,977 THE INTERVENTION IS LARGELY 870 00:26:52,043 --> 00:26:54,546 GOVERNED BY STATE LAW, AND STATE 871 00:26:54,612 --> 00:26:55,513 TORT LAW. 872 00:26:55,580 --> 00:26:58,583 SO, WHAT IS REQUIRED FOR CONSENT 873 00:26:58,650 --> 00:26:59,284 TO TREATMENT? 874 00:26:59,351 --> 00:27:03,955 WELL, IN ALL STATES PROVIDERS 875 00:27:04,022 --> 00:27:05,256 NEED TO TRUTHFULLY ANSWER 876 00:27:05,323 --> 00:27:06,324 PATIENT QUESTIONS, NEED TO 877 00:27:06,391 --> 00:27:07,359 PROVIDE PATIENTS WITH 878 00:27:07,425 --> 00:27:09,728 INFORMATION THEY KNOW PATIENTS 879 00:27:09,794 --> 00:27:10,628 WANT. 880 00:27:10,695 --> 00:27:12,030 AND IN OUR JURISDICTIONS WHICH 881 00:27:12,097 --> 00:27:15,133 TAKE SOMETIMES REFERRED TO AS 882 00:27:15,200 --> 00:27:17,635 THE PATIENT-CENTRIC APPROACH, 883 00:27:17,702 --> 00:27:21,573 PROVIDERS ALSO HAVE TO SHARE 884 00:27:21,639 --> 00:27:22,774 INFORMATION THAT THEY BELIEVE 885 00:27:22,841 --> 00:27:24,075 WOULD BE MATERIAL A PATIENT AND 886 00:27:24,142 --> 00:27:27,178 WHAT THEY KNOW OR SHOULD KNOW TO 887 00:27:27,245 --> 00:27:32,017 BE THIS PATIENT'S POSITION, AND 888 00:27:32,083 --> 00:27:37,422 YOUR MORE PROVIDER-CENTRIC 889 00:27:37,489 --> 00:27:38,590 JURISDICTIONs, YOU HAVE TO 890 00:27:38,656 --> 00:27:39,991 PROVIDE A POSITION, SO JUST WANT 891 00:27:40,058 --> 00:27:42,193 TO KEEP IN MIND WHEN WE'RE 892 00:27:42,260 --> 00:27:44,062 TALKING ABOUT CONSENT HERE, IT'S 893 00:27:44,129 --> 00:27:45,830 REALLY THIS TWO-PART INQUIRY. 894 00:27:45,897 --> 00:27:48,233 IT'S NOT JUST WHAT RESEARCH 895 00:27:48,299 --> 00:27:50,101 GUIDELINES SAY, IT'S ALSO WHAT 896 00:27:50,168 --> 00:27:52,070 IS REQUIRED AS A MATTER OF LAW 897 00:27:52,137 --> 00:27:54,606 FOR CONSENT TO THE INTERVENTION. 898 00:27:54,672 --> 00:27:55,907 AND NOTE THERE THAT CONSENT MAY 899 00:27:55,974 --> 00:27:57,108 BE GIVEN BY THE INDIVIDUAL AND 900 00:27:57,175 --> 00:28:00,345 PART OF WHAT WE'RE TALKING ABOUT 901 00:28:00,412 --> 00:28:01,379 TODAY IS HOW TO EXPAND THE 902 00:28:01,446 --> 00:28:02,881 UNIVERSE OF WHAT THE INDIVIDUAL 903 00:28:02,947 --> 00:28:04,983 CAN CONSENT TO PERHAPS BUT ALSO 904 00:28:05,050 --> 00:28:08,053 MAY BE PROVIDED BY THE SURROGATE 905 00:28:08,119 --> 00:28:09,921 AND THAT MAY BE AN AGENT 906 00:28:09,988 --> 00:28:11,222 APPOINTED UNDER WHAT WE CALL 907 00:28:11,289 --> 00:28:13,291 HEALTH CARE POWER OF ATTORNEY OR 908 00:28:13,358 --> 00:28:14,526 HEALTH CARE PROXY. 909 00:28:14,592 --> 00:28:17,462 IT MAY BE A DEFAULT SURROGATE 910 00:28:17,529 --> 00:28:18,897 AUTHORIZED BY STATE LAW OR MAY 911 00:28:18,963 --> 00:28:20,965 BE A GUARDIAN. 912 00:28:21,032 --> 00:28:22,834 AND JUST TO COMPLICATE THINGS A 913 00:28:22,901 --> 00:28:24,369 LITTLE BIT THERE IS AMBIGUITY IN 914 00:28:24,436 --> 00:28:27,639 THE LAW WHETHER SOME SURROGATES 915 00:28:27,705 --> 00:28:29,307 ACTUALLY HAVE AUTHORITY TO 916 00:28:29,374 --> 00:28:30,842 CONSENT TO RESEARCH AND WHAT 917 00:28:30,909 --> 00:28:32,377 TYPES OF RESEARCH. 918 00:28:32,444 --> 00:28:33,044 OKAY. 919 00:28:33,111 --> 00:28:35,013 SO NOW LET'S JUMP INTO SUPPORTED 920 00:28:35,080 --> 00:28:35,713 DECISION MAKING. 921 00:28:35,780 --> 00:28:37,849 I WANT TO THINK A LITTLE BIT HOW 922 00:28:37,916 --> 00:28:40,351 WE DEFINE IT AND WHAT IT REALLY 923 00:28:40,418 --> 00:28:40,785 IS. 924 00:28:40,852 --> 00:28:45,390 SO, ON THE BOARD NOW IS THE 925 00:28:45,457 --> 00:28:50,762 DEFINITION OF, WIDELY ACCEPTED 926 00:28:50,829 --> 00:28:53,832 DEFINITION, ADOPTED BY UNIFORM 927 00:28:53,898 --> 00:28:54,799 ACT PERTAINING TO GUARDIANSHIP, 928 00:28:54,866 --> 00:28:57,335 ASSISTANCE FROM ONE OR MORE 929 00:28:57,402 --> 00:29:00,071 PERSONS OF AN INDIVIDUAL'S 930 00:29:00,138 --> 00:29:02,907 CHOOSING IN UNDERSTANDING THE 931 00:29:02,974 --> 00:29:04,209 NATURE AND CONSEQUENCES OF 932 00:29:04,275 --> 00:29:06,878 POTENTIAL PERSONAL AND FINANCIAL 933 00:29:06,945 --> 00:29:09,247 DECISIONS, WHICH ENABLES THE 934 00:29:09,314 --> 00:29:10,982 INDIVIDUAL TO MAKE DECISIONS, 935 00:29:11,049 --> 00:29:12,917 AND IN COMMUNICATING A DECISION 936 00:29:12,984 --> 00:29:15,487 ONCE MADE IF CONSISTENT WITH THE 937 00:29:15,553 --> 00:29:16,788 INDIVIDUAL'S VALUES. 938 00:29:16,855 --> 00:29:18,323 SO WHAT REALLY IS SUPPORTED 939 00:29:18,389 --> 00:29:20,291 DECISION MAKING? 940 00:29:20,358 --> 00:29:23,561 WELL, IT'S THIS UMBRELLA TERM 941 00:29:23,628 --> 00:29:25,530 FOR PROCESSES THAT ENABLE 942 00:29:25,597 --> 00:29:26,631 INDIVIDUALS TO MAKE DECISIONS 943 00:29:26,698 --> 00:29:27,832 THAT PERHAPS THEY WOULDN'T 944 00:29:27,899 --> 00:29:29,701 OTHERWISE BE ABLE TO MAKE, 945 00:29:29,767 --> 00:29:30,902 BECAUSE THEY ARE RECEIVING 946 00:29:30,969 --> 00:29:33,438 SUPPORT FROM ONE OR MORE PEOPLE. 947 00:29:33,505 --> 00:29:35,373 SO, WHAT MIGHT THIS LOOK LIKE, 948 00:29:35,440 --> 00:29:36,708 WHAT MIGHT THE SUPPORT INVOLVE? 949 00:29:36,774 --> 00:29:40,545 IT MIGHT BE SUPPORT IN OBTAINING 950 00:29:40,612 --> 00:29:41,479 INFORMATION THE PERSON NEEDS TO 951 00:29:41,546 --> 00:29:42,280 MAKE A DECISION. 952 00:29:42,347 --> 00:29:45,216 IT MIGHT BE SUPPORT HELPING THEM 953 00:29:45,283 --> 00:29:46,017 IDENTIFY AND ANALYZE OPTIONS, 954 00:29:46,084 --> 00:29:47,452 WORKING THROUGH THAT 955 00:29:47,519 --> 00:29:49,087 INFORMATION. 956 00:29:49,154 --> 00:29:51,489 OR ESPECIALLY FOR PEOPLE WHO MAY 957 00:29:51,556 --> 00:29:53,691 BE NON-VERBAL IN THEIR 958 00:29:53,758 --> 00:29:55,727 COMMUNICATION OR HAVE 959 00:29:55,793 --> 00:29:56,294 NON-NORMATIVE COMMUNICATION 960 00:29:56,361 --> 00:29:59,164 STYLES, HELPING THEM COMMUNICATE 961 00:29:59,230 --> 00:30:02,066 A DECISION ONCE MADE. 962 00:30:02,133 --> 00:30:03,935 SO, SUPPORTED DECISION MAKING 963 00:30:04,002 --> 00:30:06,037 COMES IN A COUPLE FLAVORS, IF 964 00:30:06,104 --> 00:30:06,704 YOU WILL. 965 00:30:06,771 --> 00:30:08,439 SO LET'S TALK THROUGH SOME OF 966 00:30:08,506 --> 00:30:09,974 THE KEY VARIABLES THAT WE MIGHT 967 00:30:10,041 --> 00:30:11,176 SEE IN THIS SPACE. 968 00:30:11,242 --> 00:30:14,345 THE FIRST THING TO NOTE IS THAT 969 00:30:14,412 --> 00:30:16,814 SUPPORTED DECISION MAKING CAN BE 970 00:30:16,881 --> 00:30:20,985 FORMAL OR IT CAN BE INFORMAL. 971 00:30:21,052 --> 00:30:23,221 SO, SUPPORTED DECISION MAKING 972 00:30:23,288 --> 00:30:24,956 ARRANGEMENTS CAN BE FORMALIZES 973 00:30:25,023 --> 00:30:25,523 THROUGH AGREEMENTS BETWEEN A 974 00:30:25,590 --> 00:30:28,259 SUPPORTER OR GROUP OF SUPPORTERS 975 00:30:28,326 --> 00:30:30,094 AND THE INDIVIDUAL, AND SOME 976 00:30:30,161 --> 00:30:32,297 STATES HAVE ADOPTED LEGISLATION 977 00:30:32,363 --> 00:30:35,800 ACTUALLY GIVING FORMAL LEGAL 978 00:30:35,867 --> 00:30:37,168 RECOGNITION TO SUPPORTED 979 00:30:37,235 --> 00:30:38,203 DECISION-MAKING AGREEMENTS. 980 00:30:38,269 --> 00:30:40,872 BUT EVEN IN THOSE STATES, 981 00:30:40,939 --> 00:30:44,242 SUPPORTED DECISION-MAKING CAN BE 982 00:30:44,309 --> 00:30:45,443 ENTIRELILY INFORMAL. 983 00:30:45,510 --> 00:30:47,845 SO IT CAN HAPPEN WITHOUT ANY 984 00:30:47,912 --> 00:30:49,614 EXPLICIT AGREEMENT BETWEEN THE 985 00:30:49,681 --> 00:30:51,482 SUPPORTER AND THE INDIVIDUAL 986 00:30:51,549 --> 00:30:52,450 BEING SUPPORTED. 987 00:30:52,517 --> 00:30:55,853 AND THAT MAY BE A LONG-STANDING 988 00:30:55,920 --> 00:30:58,489 SUPPORTIVE RELATIONSHIP OR A 989 00:30:58,556 --> 00:30:59,457 ONE-TIME PHENOMENON. 990 00:30:59,524 --> 00:31:02,860 ANOTHER VARIABLE HERE IS WHETHER 991 00:31:02,927 --> 00:31:04,028 THE PERSON BEING SUPPORTED HAS A 992 00:31:04,095 --> 00:31:06,931 DISABILITY OR NOT. 993 00:31:06,998 --> 00:31:10,435 MOST OF US USE SUPPORTED 994 00:31:10,501 --> 00:31:11,736 DECISION MAKING WHEN MAKING 995 00:31:11,803 --> 00:31:12,604 IMPORTANT DECISIONS, FIGURING 996 00:31:12,670 --> 00:31:14,505 OUT A MAJOR PURCHASE, WHETHER WE 997 00:31:14,572 --> 00:31:16,241 WANT TO UNDERGO A MAJOR SURGERY, 998 00:31:16,307 --> 00:31:18,409 WE LOOK TO OTHER PEOPLE TO HELP 999 00:31:18,476 --> 00:31:22,680 US THINK THROUGH THESE DIFFICULT 1000 00:31:22,747 --> 00:31:24,215 DECISIONS. 1001 00:31:24,282 --> 00:31:26,618 AND THAT'S ENGAGING IN SUPPORTED 1002 00:31:26,684 --> 00:31:27,385 DECISION-MAKING. 1003 00:31:27,452 --> 00:31:29,787 ANOTHER VARIABLE WHETHER WE'RE 1004 00:31:29,854 --> 00:31:31,823 TALKING ABOUT A SUPPORTED 1005 00:31:31,889 --> 00:31:32,957 DECISION-MAKING ARRANGEMENT WITH 1006 00:31:33,024 --> 00:31:34,259 ONE OR MULTIPLE SUPPORTERS. 1007 00:31:34,325 --> 00:31:36,160 IT MAY BE THAT WE'RE JUST 1008 00:31:36,227 --> 00:31:37,795 LOOKING TO ONE INDIVIDUAL OR 1009 00:31:37,862 --> 00:31:40,732 LOOKING TO ONE INDIVIDUAL FOR A 1010 00:31:40,798 --> 00:31:41,599 PARTICULAR TYPE OF DECISION, 1011 00:31:41,666 --> 00:31:42,400 ANOTHER INDIVIDUAL FOR ANOTHER 1012 00:31:42,467 --> 00:31:44,135 TYPE OF DECISION. 1013 00:31:44,202 --> 00:31:45,870 OR SOME PEOPLE WILL LOOK FOR 1014 00:31:45,937 --> 00:31:46,738 SUPPORTERS TO WORK 1015 00:31:46,804 --> 00:31:47,505 COLLABORATIVELY WITH THEM AS A 1016 00:31:47,572 --> 00:31:47,839 GROUP. 1017 00:31:47,905 --> 00:31:50,775 YOU MAY HAVE HEARD THE TERM 1018 00:31:50,842 --> 00:31:52,210 "CIRCLE OF SUPPORT" TO 1019 00:31:52,277 --> 00:31:56,147 CHARACTERIZE THAT TYPE OF 1020 00:31:56,214 --> 00:31:56,481 RELATIONSHIP. 1021 00:31:56,547 --> 00:31:56,848 OKAY. 1022 00:31:56,914 --> 00:31:58,149 SO, WITH OUR TERMS DEFINED I 1023 00:31:58,216 --> 00:32:02,220 WANT TO TALK ABOUT THE IMPACT 1024 00:32:02,287 --> 00:32:03,154 THAT SUPPORTED DECISION-MAKING 1025 00:32:03,221 --> 00:32:06,991 CAN HAVE ON CONSENT TO RESEARCH. 1026 00:32:07,058 --> 00:32:08,526 NOW, DAVE SUGGESTED REALLY THREE 1027 00:32:08,593 --> 00:32:09,294 POSSIBLE IMPACTS HERE. 1028 00:32:09,360 --> 00:32:13,231 I WANT TO TALK THROUGH EACH. 1029 00:32:13,298 --> 00:32:14,766 ONE ENABLING CAPACITY, TWO 1030 00:32:14,832 --> 00:32:18,469 REJECTING LIMITATIONS WHICH I 1031 00:32:18,536 --> 00:32:21,039 MIGHT REFER TO AS ENABLING 1032 00:32:21,105 --> 00:32:23,341 UNIVERSITY CAPACITY. 1033 00:32:23,408 --> 00:32:25,743 THREE, PROMOTING AUTHENTICITY. 1034 00:32:25,810 --> 00:32:27,845 LET'S START WITH ENABLING 1035 00:32:27,912 --> 00:32:28,146 CAPACITY. 1036 00:32:28,212 --> 00:32:31,115 HERE I THINK SUPPORTED 1037 00:32:31,182 --> 00:32:31,849 DECISION-MAKING HAS TREMENDOUS 1038 00:32:31,916 --> 00:32:35,453 POTENTIAL TO EXPAND WHO CAN 1039 00:32:35,520 --> 00:32:37,588 CONSENT TO RESEARCH, MUCH AS I 1040 00:32:37,655 --> 00:32:40,425 NEED SUBSTANTIAL HELP TO READ 1041 00:32:40,491 --> 00:32:42,060 THESE SLIDES, MY CONTACTS, 1042 00:32:42,126 --> 00:32:45,897 PEOPLE MAY NEED HELP TO REACH 1043 00:32:45,963 --> 00:32:47,098 DECISIONS ABOUT RESEARCH. 1044 00:32:47,165 --> 00:32:49,400 SO, WHAT ROLES CAN SUPPORTERS 1045 00:32:49,467 --> 00:32:49,834 PLAY? 1046 00:32:49,901 --> 00:32:50,702 WELL, A VARIETY. 1047 00:32:50,768 --> 00:32:54,205 THEY MAY HELP A PERSON OBTAIN 1048 00:32:54,272 --> 00:32:54,539 INFORMATION. 1049 00:32:54,605 --> 00:32:56,507 FIGURE OUT WHAT QUESTIONS TO 1050 00:32:56,574 --> 00:32:56,774 ASK. 1051 00:32:56,841 --> 00:32:59,143 SO, LET'S IMAGINE THE SUPPORTER 1052 00:32:59,210 --> 00:33:02,313 KNOWS THAT THE INDIVIDUAL WHO IS 1053 00:33:02,380 --> 00:33:06,117 BEING APPROACHED AS A RESEARCH 1054 00:33:06,184 --> 00:33:08,086 SUBJECT IS REALLY APPREHENSIVE 1055 00:33:08,152 --> 00:33:09,020 ABOUT PAIN, FEELING CONFUSED, 1056 00:33:09,087 --> 00:33:12,056 WHAT WILL THIS INVOLVE? 1057 00:33:12,123 --> 00:33:13,124 THE SUPPORTER MIGHT 1058 00:33:13,191 --> 00:33:14,325 AFFIRMATIVELY ASK THE 1059 00:33:14,392 --> 00:33:16,327 RESEARCHER, WILL THIS INVOLVE 1060 00:33:16,394 --> 00:33:16,994 PAIN, RIGHT? 1061 00:33:17,061 --> 00:33:20,498 AND IN THAT WAY THE SUPPORTER 1062 00:33:20,565 --> 00:33:21,833 HELPS THE INDIVIDUAL OBTAIN THE 1063 00:33:21,899 --> 00:33:25,236 INFORMATION THEY NEED TO BE ABLE 1064 00:33:25,303 --> 00:33:27,071 TO MAKE A CHOICE. 1065 00:33:27,138 --> 00:33:28,940 SUPPORTERS MAY ALSO HELP 1066 00:33:29,006 --> 00:33:30,575 INDIVIDUALS PROCESS INFORMATION. 1067 00:33:30,641 --> 00:33:32,176 SO, IMAGINE THE RESEARCHER SAYS, 1068 00:33:32,243 --> 00:33:33,644 WELL, ONE OF THE RISKS OF THIS 1069 00:33:33,711 --> 00:33:35,279 RESEARCH IS IT MAY LEAVE A BAD 1070 00:33:35,346 --> 00:33:37,348 TASTE IN YOUR MOUTH OR IF WE 1071 00:33:37,415 --> 00:33:39,417 LOOK IN YOUR STOMACH WE MAY FIND 1072 00:33:39,484 --> 00:33:40,318 SOMETHING WE DIDN'T EXPECT, AND 1073 00:33:40,385 --> 00:33:43,921 THERE MAY BE A NEED FOR 1074 00:33:43,988 --> 00:33:45,123 FOLLOW-UP TESTS OR PROCEDURES, 1075 00:33:45,189 --> 00:33:45,323 RIGHT? 1076 00:33:45,390 --> 00:33:46,991 THE SUPPORTER MAY BE IN A GREAT 1077 00:33:47,058 --> 00:33:48,359 POSITION TO HELP THE PERSON 1078 00:33:48,426 --> 00:33:51,696 REALLY UNDERSTAND WHAT DOES THAT 1079 00:33:51,763 --> 00:33:51,929 MEAN. 1080 00:33:51,996 --> 00:33:53,598 PERHAPS COMPARING THAT TO OTHER 1081 00:33:53,664 --> 00:33:56,968 EVENTS IN THE PERSON'S LIFE THAT 1082 00:33:57,034 --> 00:33:58,269 ARE PARALLEL OR ANALOGOUS TO 1083 00:33:58,336 --> 00:34:00,271 HELP THEM FIGURE SOUTH THIS 1084 00:34:00,338 --> 00:34:01,205 SOMETHING I'M COMFORTABLE 1085 00:34:01,272 --> 00:34:03,341 AGREEING TO, WHAT AM I BEING 1086 00:34:03,408 --> 00:34:05,309 ASKED TO DO REALLY HERE? 1087 00:34:05,376 --> 00:34:07,311 AND THEN A SUPPORTER MAY PLAY 1088 00:34:07,378 --> 00:34:08,279 CRITICAL IMPORTANT ROLE HELPING 1089 00:34:08,346 --> 00:34:09,814 COMMUNICATE A DECISION ONCE 1090 00:34:09,881 --> 00:34:10,448 MADE. 1091 00:34:10,515 --> 00:34:11,682 AGAIN, ESPECIALLY IF THE 1092 00:34:11,749 --> 00:34:12,216 INDIVIDUAL TYPICALLY 1093 00:34:12,283 --> 00:34:13,751 COMMUNICATES IN A WAY THAT MAY 1094 00:34:13,818 --> 00:34:20,425 BE DIFFICULT FOR THE RESEARCHER 1095 00:34:20,491 --> 00:34:23,027 TO UNDERSTAND. 1096 00:34:23,094 --> 00:34:25,596 RECOGNIZING SUPPORTED 1097 00:34:25,663 --> 00:34:26,330 DECISION-MAKING AS A LEGITIMATE 1098 00:34:26,397 --> 00:34:27,999 WAY FOR PEOPLE TO MAKE 1099 00:34:28,065 --> 00:34:29,400 DECISIONS, INCLUDING PEOPLE WITH 1100 00:34:29,467 --> 00:34:30,701 DISABILITIES TO MAKE DECISIONS, 1101 00:34:30,768 --> 00:34:33,037 THEN CAN HELP RESEARCHERS DO A 1102 00:34:33,104 --> 00:34:34,238 COUPLE DIFFERENT THINGS. 1103 00:34:34,305 --> 00:34:37,842 ONE, IT MAY HELP RESEARCHERS 1104 00:34:37,909 --> 00:34:41,679 IMPROVE THE CAPACITY ASSESSMENT 1105 00:34:41,746 --> 00:34:42,647 PROCESS. 1106 00:34:42,713 --> 00:34:45,316 SO, FOR EXAMPLE, RESEARCHERS 1107 00:34:45,383 --> 00:34:46,951 SHOULD REALLY CONSIDER ASKING 1108 00:34:47,018 --> 00:34:48,820 INDIVIDUALS, DO YOU WANT A 1109 00:34:48,886 --> 00:34:49,187 SUPPORTER HERE? 1110 00:34:49,253 --> 00:34:50,688 IS THERE SOMEONE YOU WANT TO 1111 00:34:50,755 --> 00:34:54,258 HAVE WITH YOU AS WE DO THE 1112 00:34:54,325 --> 00:34:54,759 CAPACITY ASSESSMENT? 1113 00:34:54,826 --> 00:34:56,394 MUCH LIKE WHEN I GO TO THE 1114 00:34:56,461 --> 00:34:59,864 DEPARTMENT OF VEHICLES, I DO 1115 00:34:59,931 --> 00:35:01,098 THAT EYESIGHT TEST, I'M NOT 1116 00:35:01,165 --> 00:35:02,433 ASKED TO TEST MY EYESIGHT 1117 00:35:02,500 --> 00:35:03,601 WITHOUT MY CONTACTS IN. 1118 00:35:03,668 --> 00:35:05,770 I'D NEVER BE ALLOWED TO DRIVE 1119 00:35:05,837 --> 00:35:06,070 AGAIN. 1120 00:35:06,137 --> 00:35:07,538 WE TEST MY EYESIGHT WITH THE 1121 00:35:07,605 --> 00:35:11,042 SUPPORT IN THAT I WILL USE TO 1122 00:35:11,108 --> 00:35:12,577 DRIVE. 1123 00:35:12,643 --> 00:35:18,816 SO, THE RESEARCHER CAN EXPAND 1124 00:35:18,883 --> 00:35:22,320 THE PROCESS AND CREATE MORE 1125 00:35:22,386 --> 00:35:22,887 ACCURATE ASSESSMENT IF THEY 1126 00:35:22,954 --> 00:35:24,722 ALLOW THE PERSON TO USE THEIR 1127 00:35:24,789 --> 00:35:27,458 SUPPORTS POTENTIALLY AS PART OF 1128 00:35:27,525 --> 00:35:28,893 THAT CAPACITY ASSESSMENT 1129 00:35:28,960 --> 00:35:29,760 PROCESS. 1130 00:35:29,827 --> 00:35:32,196 ANOTHER THING THAT'S GOING TO 1131 00:35:32,263 --> 00:35:33,464 HELP RESEARCHERS IS FACILITATE 1132 00:35:33,531 --> 00:35:35,233 INFORMED CONSENT TO RESEARCH. 1133 00:35:35,299 --> 00:35:36,334 YOU REMEMBER THOSE SHADED BARS 1134 00:35:36,400 --> 00:35:40,304 THAT WE JUST SAW ON DAVE'S 1135 00:35:40,371 --> 00:35:41,172 PRESENTATION? 1136 00:35:41,239 --> 00:35:43,107 IT MAY BE THAT THE INDIVIDUAL 1137 00:35:43,174 --> 00:35:45,543 HAS ENOUGH TO SORT OF GET YOU 1138 00:35:45,610 --> 00:35:47,178 OVER THE THRESHOLD, BUT IN OUR 1139 00:35:47,245 --> 00:35:49,480 IDEAL WORD WE BUMP THAT UP 1140 00:35:49,547 --> 00:35:51,382 HIGHER TO MAKE SURE THE 1141 00:35:51,449 --> 00:35:53,084 INDIVIDUAL HAS AS MUCH KNOWLEDGE 1142 00:35:53,150 --> 00:35:55,086 AS POSSIBLE, UNDERSTANDING AS 1143 00:35:55,152 --> 00:35:57,021 POSSIBLE, TO PROCEED. 1144 00:35:57,088 --> 00:35:58,456 EVEN IF WE DON'T NEED SUPPORT TO 1145 00:35:58,523 --> 00:36:00,558 GET PEOPLE OVER THAT THRESHOLD, 1146 00:36:00,625 --> 00:36:03,628 IT MAY ENHANCE THEIR CAPACITY, 1147 00:36:03,694 --> 00:36:04,729 AND THEN FINALLY THE SUPPORTER 1148 00:36:04,795 --> 00:36:06,597 MAY BE ABLE TO PLAY AN IMPORTANT 1149 00:36:06,664 --> 00:36:09,000 ROLE DURING THE COURSE OF THE 1150 00:36:09,066 --> 00:36:12,603 RESEARCH AND NOT JUST AT THAT 1151 00:36:12,670 --> 00:36:15,239 INITIAL CONSENT EVENT. 1152 00:36:15,306 --> 00:36:18,309 NOW LET'S CONSIDER THE SECOND 1153 00:36:18,376 --> 00:36:20,511 POTENTIAL IMPACT AND HERE AGAIN 1154 00:36:20,578 --> 00:36:23,114 I AGREE WITH PROFESSOR WENDLER. 1155 00:36:23,180 --> 00:36:26,517 SO, THE QUESTION IS, WELL, DOES 1156 00:36:26,584 --> 00:36:27,385 SUPPORTED DECISION-MAKING GET US 1157 00:36:27,451 --> 00:36:30,788 TO PLACE WHERE WE CAN SAY THAT 1158 00:36:30,855 --> 00:36:32,723 EVERYONE HAS CAPACITY TO CONCEPT 1159 00:36:32,790 --> 00:36:34,959 OR REFUSE CONSENT TO RESEARCH? 1160 00:36:35,026 --> 00:36:39,230 AND HERE I THINK THE REALITY IS 1161 00:36:39,297 --> 00:36:40,364 THAT SUPPORTED DECISION-MAKING 1162 00:36:40,431 --> 00:36:43,401 SIMPLY CANNOT ENSURE THAT ALL 1163 00:36:43,467 --> 00:36:46,370 PEOPLE CAN MAKE OR COMMUNICATE 1164 00:36:46,437 --> 00:36:46,837 DECISIONS. 1165 00:36:46,904 --> 00:36:48,339 SOME PEOPLE'S DISABILITIES WILL 1166 00:36:48,406 --> 00:36:49,540 BE TOO PROFOUND. 1167 00:36:49,607 --> 00:36:52,410 OR THEY MAY NOT BE ABLE TO OR 1168 00:36:52,476 --> 00:36:56,347 MAY NOT HAVE YET BECOME ABLE TO 1169 00:36:56,414 --> 00:36:59,317 DEVELOP A TYPE OF SUPPORTED 1170 00:36:59,383 --> 00:37:00,818 RELATIONSHIP THAT WILL ALLOW 1171 00:37:00,885 --> 00:37:02,320 THEM TO EXERCISE THE CAPACITY 1172 00:37:02,386 --> 00:37:08,159 THEY MIGHT IF THEY HAD SUCH A 1173 00:37:08,225 --> 00:37:08,893 RELATIONSHIP. 1174 00:37:08,960 --> 00:37:09,493 SO, SUPPORTED DECISION-MAKING 1175 00:37:09,560 --> 00:37:11,762 CANNOT, IN MY OPINION, BE 1176 00:37:11,829 --> 00:37:13,931 UNIVERSAL REPLACEMENT FOR 1177 00:37:13,998 --> 00:37:17,401 SURROGATE DECISION-MAKING. 1178 00:37:17,468 --> 00:37:18,002 RATHER WHAT SUPPORTED 1179 00:37:18,069 --> 00:37:24,675 DECISION-MAKING DOES IS ALLOW US 1180 00:37:24,742 --> 00:37:26,477 TO ERODE ARTIFICIAL BARRIERS FOR 1181 00:37:26,544 --> 00:37:28,179 PEOPLE EXERCISING CAPACITY MUCH 1182 00:37:28,245 --> 00:37:32,250 AS TESTING ME WITH CONTACTSES IN 1183 00:37:32,316 --> 00:37:33,551 FOR DRIVING REMOVES ARTIFICIAL 1184 00:37:33,618 --> 00:37:37,154 BARRIER SAYING YOU CAN'T DRIVE 1185 00:37:37,221 --> 00:37:38,889 BECAUSE EYESIGHT IS NOT GOOD BUT 1186 00:37:38,956 --> 00:37:40,224 WE KNOW WITH CONTACTS IN SHE'S 1187 00:37:40,291 --> 00:37:43,861 SAFE TO DRIVE. 1188 00:37:43,928 --> 00:37:44,362 I ASSURE YOU. 1189 00:37:44,428 --> 00:37:46,030 [LAUGHTER] 1190 00:37:46,097 --> 00:37:47,331 >> YOU'RE PARKED IN P-2. 1191 00:37:47,398 --> 00:37:47,665 >> RIGHT. 1192 00:37:47,732 --> 00:37:47,932 [LAUGHTER] 1193 00:37:47,999 --> 00:37:51,268 IT TOOK A WHILE TO PARK IN P-2. 1194 00:37:51,335 --> 00:37:54,772 SO LET'S TALK ABOUT THE THIRD 1195 00:37:54,839 --> 00:37:56,741 POTENTIAL HERE. 1196 00:37:56,807 --> 00:37:59,477 AND THIS IS WHAT DAVE SUGGESTED 1197 00:37:59,543 --> 00:38:01,545 IS A ROLE FOR SUPPORTED 1198 00:38:01,612 --> 00:38:03,080 DECISION-MAKING IN PROMOTING 1199 00:38:03,147 --> 00:38:04,515 AUTHENTICITY. 1200 00:38:04,582 --> 00:38:05,483 AS I UNDERSTAND THE ARGUMENT 1201 00:38:05,549 --> 00:38:09,654 ADVANCED IN THE PAPER, IT'S THAT 1202 00:38:09,720 --> 00:38:15,459 SUPPORTED DECISION-MAKING COULD 1203 00:38:15,526 --> 00:38:16,661 BE INCORPORATED INTO DECISION 1204 00:38:16,727 --> 00:38:18,863 MAKING BY HAVING PEOPLE DOCUMENT 1205 00:38:18,929 --> 00:38:20,698 THEIR VALUES, THEIR WISHES, 1206 00:38:20,765 --> 00:38:23,134 THEIR PREFERENCES, AND THEN 1207 00:38:23,200 --> 00:38:28,039 HAVING OTHER PEOPLE MAKE 1208 00:38:28,105 --> 00:38:29,373 DECISIONS WITH OR FOR THEM BASED 1209 00:38:29,440 --> 00:38:31,242 ON THOSE VALUES AND PREFERENCES. 1210 00:38:31,308 --> 00:38:34,211 AND THIS IS A TERRIFIC IDEA. 1211 00:38:34,278 --> 00:38:39,550 BUT I DON'T THINK IT COUNTS AS 1212 00:38:39,617 --> 00:38:41,385 SUPPORTED DECISION MAKING. 1213 00:38:41,452 --> 00:38:42,620 I THINK BY DEFINITION IT 1214 00:38:42,687 --> 00:38:46,057 REQUIRES TO BE INDIVIDUALS TO BE 1215 00:38:46,123 --> 00:38:47,825 CONTEMPORANEOUSLY MAKING 1216 00:38:47,892 --> 00:38:51,862 DECISIONS FOR THEMSELVES. 1217 00:38:51,929 --> 00:38:52,730 SURROGATE DECISION-MAKING 1218 00:38:52,797 --> 00:38:53,597 INVOLVES OTHER PEOPLE MAKING 1219 00:38:53,664 --> 00:38:55,466 DECISIONS FOR THE INDIVIDUAL, BY 1220 00:38:55,533 --> 00:38:59,837 CONTRAST, FOR THE SUBJECT. 1221 00:38:59,904 --> 00:39:02,139 I SUGGEST WHAT DAVE WAS 1222 00:39:02,206 --> 00:39:06,844 DESCRIBING HERE IS REALLY GOOD 1223 00:39:06,911 --> 00:39:07,578 SURROGATE DECISION-MAKING. 1224 00:39:07,645 --> 00:39:09,747 ENSURING THAT WHEN A SURROGATE 1225 00:39:09,814 --> 00:39:10,681 IS MAKING DECISIONS, THEY ARE 1226 00:39:10,748 --> 00:39:14,051 DOING SO IN A WAY THAT IS 1227 00:39:14,118 --> 00:39:17,621 CONSISTENT WITH THE INDIVIDUAL'S 1228 00:39:17,688 --> 00:39:20,558 PREFERENCES, VALUES, WISHES, AND 1229 00:39:20,624 --> 00:39:22,426 PART OF WHAT SUPPORTED 1230 00:39:22,493 --> 00:39:24,261 DECISION-MAKING PROCESSES CAN DO 1231 00:39:24,328 --> 00:39:27,998 IS HELP SURFACE THOSE VALUES AND 1232 00:39:28,065 --> 00:39:29,633 PREFERENCES TO ENABLE SURROGATES 1233 00:39:29,700 --> 00:39:32,269 TO DO WHAT SURROGATES SHOULD 1234 00:39:32,336 --> 00:39:34,672 ALWAYS DO, WHICH IS TO SAY TO 1235 00:39:34,739 --> 00:39:37,975 ENABLE SURROGATES TO USE 1236 00:39:38,042 --> 00:39:38,676 SUBSTITUTED JUDGMENT, 1237 00:39:38,743 --> 00:39:41,145 SUBSTITUTING THE JUDGMENT OF THE 1238 00:39:41,212 --> 00:39:44,081 SUBJECT FOR THEIR OWN PERSONAL 1239 00:39:44,148 --> 00:39:44,381 PREFERENCES. 1240 00:39:44,448 --> 00:39:46,484 AND SO, WHILE THAT MAY IN FACT 1241 00:39:46,550 --> 00:39:48,886 BE INCONSISTENT WITH CURRENT 1242 00:39:48,953 --> 00:39:50,654 PRACTICE, IT'S IN FACT NOT 1243 00:39:50,721 --> 00:39:52,523 INCONSISTENT WITH WHAT CURRENT 1244 00:39:52,590 --> 00:39:54,925 PRACTICE SHOULD BE OR FRANKLY 1245 00:39:54,992 --> 00:39:57,328 WHAT THE LAW, ESPECIALLY WHEN WE 1246 00:39:57,394 --> 00:40:04,001 GET TO CONSENT TO TREATMENT, IS 1247 00:40:04,068 --> 00:40:06,070 TYPICALLY REQUIRING. 1248 00:40:06,137 --> 00:40:07,171 SO, IS THIS SUPPORTED 1249 00:40:07,238 --> 00:40:07,738 DECISION-MAKING? 1250 00:40:07,805 --> 00:40:09,006 NO. 1251 00:40:09,073 --> 00:40:11,008 BUT IS IT SOMETHING SUPPORTED 1252 00:40:11,075 --> 00:40:13,110 DECISION-MAKING SORT OF CULTURE 1253 00:40:13,177 --> 00:40:15,379 IF YOU WILL COULD HELP US GET 1254 00:40:15,446 --> 00:40:15,713 TO? 1255 00:40:15,780 --> 00:40:16,213 PERHAPS. 1256 00:40:16,280 --> 00:40:22,920 SO, IF WE SORT OF SUMMARIZE HERE 1257 00:40:22,987 --> 00:40:25,890 IS WHETHER I COME OUT. 1258 00:40:25,956 --> 00:40:28,425 CAN IT ENABLE CAPACITY? 1259 00:40:28,492 --> 00:40:31,028 YOU BETCHA IN A WAY THAT'S 1260 00:40:31,095 --> 00:40:33,664 INCREDIBLY VALUABLE. 1261 00:40:33,731 --> 00:40:36,834 CAN IT HELP RECOLLECT REALIZE 1262 00:40:36,901 --> 00:40:37,268 UNIVERSAL CAPACITY? 1263 00:40:37,334 --> 00:40:37,601 NO. 1264 00:40:37,668 --> 00:40:43,207 CAN IT PROMOTE YOU 1265 00:40:43,274 --> 00:40:43,641 AUTHENTICITY? 1266 00:40:43,707 --> 00:40:43,974 PERHAPS. 1267 00:40:44,041 --> 00:40:45,843 A BETTER WAY IS IT CAN HELP GET 1268 00:40:45,910 --> 00:40:49,346 US CLOSER TO THE GOLD STAND 1269 00:40:49,413 --> 00:40:50,648 AROUND FOR SURROGATE 1270 00:40:50,714 --> 00:40:51,749 DECISION-MAKING, SUBSTITUTED 1271 00:40:51,816 --> 00:40:56,554 JUDGMENT, AND THUS BLEED INTO 1272 00:40:56,620 --> 00:40:56,987 IMPROVING SURROGATE 1273 00:40:57,054 --> 00:40:57,822 DECISION-MAKING. 1274 00:40:57,888 --> 00:40:59,723 AS I WRAP UP, I WANT TO MAKE 1275 00:40:59,790 --> 00:41:04,662 SURE WE DON'T LOSE SIGHT OF THE 1276 00:41:04,728 --> 00:41:09,800 BIG PICTURE HERE. 1277 00:41:09,867 --> 00:41:10,701 THE REQUIREMENT THAT RESEARCH 1278 00:41:10,768 --> 00:41:16,106 PROCEED ONLY WITH THE CONSENT OF 1279 00:41:16,173 --> 00:41:18,375 THE SUBJECT IS CRITICAL TO 1280 00:41:18,442 --> 00:41:20,344 PROTECTING FUNDAMENTAL HUMAN 1281 00:41:20,411 --> 00:41:26,951 RIGHTS OF SUBJECTS. 1282 00:41:27,017 --> 00:41:29,220 AND THE REQUIREMENT THAT -- OF 1283 00:41:29,286 --> 00:41:30,387 CONSENT IS MEANINGLESS UNLESS 1284 00:41:30,454 --> 00:41:34,925 THE PERSON WHO IS PROVIDING THE 1285 00:41:34,992 --> 00:41:36,460 CONSENT CAN UNDERSTAND THE 1286 00:41:36,527 --> 00:41:39,864 NATURE AND CONSEQUENCES OF WHAT 1287 00:41:39,930 --> 00:41:41,532 THEY ARE CONSENTING TO. 1288 00:41:41,599 --> 00:41:46,303 SO, WE DON'T WANT TO ALLOW 1289 00:41:46,370 --> 00:41:47,605 SUPPORTED DECISION-MAKING TO BE 1290 00:41:47,671 --> 00:41:50,574 USED TO CREATE SORT OF AND END 1291 00:41:50,641 --> 00:41:53,611 RUN AROUND THESE CRITICAL 1292 00:41:53,677 --> 00:41:55,613 PROTECTIONS, AND SO WHILE I'M 1293 00:41:55,679 --> 00:41:57,348 EXCITED ABOUT THE POTENTIAL 1294 00:41:57,414 --> 00:41:58,215 SUPPORTED DECISION-MAKING TO 1295 00:41:58,282 --> 00:42:01,518 EXPAND, WHO CAN CONSENT TO 1296 00:42:01,585 --> 00:42:02,686 RESEARCH, I'M ALSO CONCERNED. 1297 00:42:02,753 --> 00:42:08,092 I'M CONCERNED IT MAY BE USED TO 1298 00:42:08,158 --> 00:42:09,627 WHITE-WASH SITUATIONS IN WHICH 1299 00:42:09,693 --> 00:42:10,527 INDIVIDUALS ARE BEING ENROLLED 1300 00:42:10,594 --> 00:42:13,664 IN RESEARCH WHERE THEY DON'T 1301 00:42:13,731 --> 00:42:14,832 TRULY UNDERSTAND RISKS AND 1302 00:42:14,899 --> 00:42:18,369 BENEFITS, AND WHERE THERE IS NO 1303 00:42:18,435 --> 00:42:20,804 LEGALLY AUTHORIZED SURROGATE TO 1304 00:42:20,871 --> 00:42:21,338 PROVIDE CONSENT OR 1305 00:42:21,405 --> 00:42:23,674 ACCOUNTABILITY THAT WOULD BE 1306 00:42:23,741 --> 00:42:25,409 ASSOCIATED WITH A SURROGATE. 1307 00:42:25,476 --> 00:42:26,810 AND SO SPECIFICALLY, I GUESS TO 1308 00:42:26,877 --> 00:42:29,546 PUT A MORE FINE POINT ON IT, I'M 1309 00:42:29,613 --> 00:42:31,982 CONCERNED THAT IT MAY BE 1310 00:42:32,049 --> 00:42:34,051 TEMPTING TO TRY TO EXPAND 1311 00:42:34,118 --> 00:42:38,555 INCLUSION OF PEOPLE WITH 1312 00:42:38,622 --> 00:42:39,857 DISABILITIES, COGNITIVE 1313 00:42:39,924 --> 00:42:40,424 DISABILITIES, INTELLECTUAL 1314 00:42:40,491 --> 00:42:42,259 DISABILITIES, ON THE GROUNDS THE 1315 00:42:42,326 --> 00:42:43,360 PERSON HAS IDENTIFIED A 1316 00:42:43,427 --> 00:42:45,663 SUPPORTER TO HELP THEM WITH A 1317 00:42:45,729 --> 00:42:46,163 DECISION. 1318 00:42:46,230 --> 00:42:48,632 BUT THE FACT THAT AN INDIVIDUAL 1319 00:42:48,699 --> 00:42:50,501 HAS A SUPPORTER, OR THAT A 1320 00:42:50,567 --> 00:42:51,468 RESEARCHER MIGHT SAY, WELL, THIS 1321 00:42:51,535 --> 00:42:53,904 IS A PERSON WHO IS SUPPORTING 1322 00:42:53,971 --> 00:42:56,006 THEM, DOESN'T IN AND OF ITSELF, 1323 00:42:56,073 --> 00:42:58,042 EVEN IF WE HAVE A FORMAL 1324 00:42:58,108 --> 00:43:04,515 AGREEMENT, TELL US THAT THE 1325 00:43:04,581 --> 00:43:07,685 PERSON UNDERSTANDS THIS DECISION 1326 00:43:07,751 --> 00:43:09,954 AND CAN MAKE THE CHOICE ABOUT 1327 00:43:10,020 --> 00:43:11,822 THIS PARTICULAR DECISION. 1328 00:43:11,889 --> 00:43:14,591 SO, I THINK THE CORE INQUIRY 1329 00:43:14,658 --> 00:43:15,893 REALLY REMAINS THE SAME. 1330 00:43:15,960 --> 00:43:17,428 DOES THE PERSON UNDERSTAND THE 1331 00:43:17,494 --> 00:43:19,630 NATURE AND CONSEQUENCES OF THE 1332 00:43:19,697 --> 00:43:21,198 DECISION? 1333 00:43:21,265 --> 00:43:25,302 HAVE THEY MADE A CHOICE BASED ON 1334 00:43:25,369 --> 00:43:30,574 THAT UNDERSTANDING? 1335 00:43:30,641 --> 00:43:31,275 SUPPORTED DECISION-MAKING CAN GO 1336 00:43:31,342 --> 00:43:33,444 A LONG WAY TO MAKE SURE PEOPLE 1337 00:43:33,510 --> 00:43:35,512 MEET THAT STANDARD, POSITIVE IN 1338 00:43:35,579 --> 00:43:37,081 TERMS OF DIGNITARY IMPACTS, 1339 00:43:37,147 --> 00:43:40,317 POSITIVE IN TERMS OF EXPANDING 1340 00:43:40,384 --> 00:43:43,620 THE KNOWLEDGE BASE, IT MAKES 1341 00:43:43,687 --> 00:43:50,060 RESEARCH MORE INCLUSIVE. 1342 00:43:50,127 --> 00:43:51,495 SIMILARLY RECOGNIZING LEGITIMACY 1343 00:43:51,562 --> 00:43:53,263 OF DECISIONS MADE WITH SUPPORT 1344 00:43:53,330 --> 00:43:56,100 CAN GET RID OF ARTIFICIAL 1345 00:43:56,166 --> 00:43:57,334 BARRIERS TO CONSENT, HELPING US 1346 00:43:57,401 --> 00:43:59,803 UNDERSTAND THAT THE FACT THAT A 1347 00:43:59,870 --> 00:44:02,439 PERSON MAY USE SUPPORT TO MAKE A 1348 00:44:02,506 --> 00:44:05,943 DECISION DOES NOT MAKE THAT 1349 00:44:06,010 --> 00:44:06,710 DECISION ILLEGITIMATE. 1350 00:44:06,777 --> 00:44:08,445 SO, I WILL END THERE. 1351 00:44:08,512 --> 00:44:10,781 HERE IS MY CONTACT INFORMATION. 1352 00:44:10,848 --> 00:44:12,416 AND AGAIN, THANKS FOR INCLUDING 1353 00:44:12,483 --> 00:44:12,616 ME. 1354 00:44:12,683 --> 00:44:14,151 I LOOK FORWARD TO THE 1355 00:44:14,218 --> 00:44:14,718 DISCUSSION. 1356 00:44:14,785 --> 00:44:17,021 [APPLAUSE] 1357 00:44:19,356 --> 00:44:20,057 >> THANKS, NINA. 1358 00:44:20,124 --> 00:44:23,193 I WAS GOING START WITH A VERY 1359 00:44:23,260 --> 00:44:23,761 PRACTICAL QUESTION. 1360 00:44:23,827 --> 00:44:27,631 I DON'T KNOW IF THIS IS -- I'M 1361 00:44:27,698 --> 00:44:30,267 STARTING FROM YOUR ANALOGY OF 1362 00:44:30,334 --> 00:44:32,369 THE CONTACT LENSES AND PASSING 1363 00:44:32,436 --> 00:44:34,338 THE DRIVER TEST. 1364 00:44:34,405 --> 00:44:35,305 >> YEAH. 1365 00:44:35,372 --> 00:44:38,675 >> AND I WILL SAY, GETTING TO 1366 00:44:38,742 --> 00:44:41,645 P-2 WASN'T EASY. 1367 00:44:41,712 --> 00:44:43,247 NINA DID A GREAT JOB, IT'S ON 1368 00:44:43,313 --> 00:44:44,815 THE PUBLIC RECORD, THIS IS 1369 00:44:44,882 --> 00:44:46,250 RECORDED SO WE'LL HAVE THAT. 1370 00:44:46,316 --> 00:44:49,653 I DON'T KNOW IF THIS IS TAKING 1371 00:44:49,720 --> 00:44:57,227 THAT ANALOGY TOO SERIOUSLY BUT 1372 00:44:57,294 --> 00:44:58,429 WHAT IMPLICATIONS. 1373 00:44:58,495 --> 00:44:59,830 I HAVE COLLEAGUES WHO DO 1374 00:44:59,897 --> 00:45:01,365 CAPACITY ASSESSMENT. 1375 00:45:01,432 --> 00:45:03,867 THE WAY I DO THEM, FREQUENTLY I 1376 00:45:03,934 --> 00:45:05,669 WILL ASK FAMILY MEMBERS TO STEP 1377 00:45:05,736 --> 00:45:08,072 OUT OF THE ROOM WHILE I JUST 1378 00:45:08,138 --> 00:45:09,573 TALK TO THE INDIVIDUAL WHOSE 1379 00:45:09,640 --> 00:45:11,608 CAPACITY I WANT TO ASSESS, OR IF 1380 00:45:11,675 --> 00:45:13,877 THEY STAY IN THE ROOM BECAUSE 1381 00:45:13,944 --> 00:45:14,678 THE PERSON'S UNCOMFORTABLE 1382 00:45:14,745 --> 00:45:16,246 WITHOUT THEM IN THE ROOM I ASK 1383 00:45:16,313 --> 00:45:17,915 THEM JUST TO PLEASE DON'T SAY 1384 00:45:17,981 --> 00:45:20,984 ANYTHING AND LET ME TALK TO THE 1385 00:45:21,051 --> 00:45:21,652 POTENTIAL PARTICIPANT THEMSELVES 1386 00:45:21,718 --> 00:45:24,154 BECAUSE I WANT TO SEE WHAT THEY 1387 00:45:24,221 --> 00:45:25,022 UNDERSTAND AND WHAT THEIR 1388 00:45:25,089 --> 00:45:26,423 REASONING IS LIKE. 1389 00:45:26,490 --> 00:45:30,360 SO, I WONDER IF YOU THINK, IS 1390 00:45:30,427 --> 00:45:31,161 THAT -- WOULD SUPPORTED 1391 00:45:31,228 --> 00:45:31,929 DECISION-MAKING SAY I SHOULD 1392 00:45:31,995 --> 00:45:32,930 STOP DOING IT THAT WAY, SHOULD 1393 00:45:32,996 --> 00:45:34,798 THE FAMILY BE IN THERE, CAN THEY 1394 00:45:34,865 --> 00:45:37,267 CONTRIBUTE, DO THEY GET TO MAKE 1395 00:45:37,334 --> 00:45:37,968 RECOMMENDATION, GIVE ADVICE, 1396 00:45:38,035 --> 00:45:39,837 REMIND PEOPLE? 1397 00:45:39,903 --> 00:45:40,904 HOW SHOULD THAT GO, DO YOU 1398 00:45:40,971 --> 00:45:41,238 THINK? 1399 00:45:41,305 --> 00:45:43,207 DO YOU HAVE THOUGHTS ON THAT? 1400 00:45:43,273 --> 00:45:43,841 >> TERRIFIC QUESTION. 1401 00:45:43,907 --> 00:45:46,043 I GUESS I WOULD SAY TO ME IT 1402 00:45:46,110 --> 00:45:48,912 SUGGESTS YOU WOULD WANT A 1403 00:45:48,979 --> 00:45:50,214 TWO-PART ASSESSMENT, RIGHT? 1404 00:45:50,280 --> 00:45:52,049 SO YOU MIGHT STILL WANT THAT 1405 00:45:52,116 --> 00:45:54,585 SAME OUT OF THE ROOM ASSESSMENT, 1406 00:45:54,651 --> 00:45:54,818 RIGHT? 1407 00:45:54,885 --> 00:45:56,987 IN PART BECAUSE YOU MAY BE 1408 00:45:57,054 --> 00:45:59,656 CONCERNED, FOR EXAMPLE, ABOUT 1409 00:45:59,723 --> 00:46:00,624 PRESSURE OR UNDUE INFLUENCE. 1410 00:46:00,691 --> 00:46:02,059 AND WITH THE SUPPORTER IN THE 1411 00:46:02,126 --> 00:46:04,995 ROOM WE'LL HAVE TROUBLE GETTING 1412 00:46:05,062 --> 00:46:10,567 AT THOSE ISSUES AND 1413 00:46:10,634 --> 00:46:11,568 VOLUNTARINESS, BUT THEN A SECOND 1414 00:46:11,635 --> 00:46:14,972 WHERE THE PERSON IS INVITED TO 1415 00:46:15,038 --> 00:46:16,940 SELECT A SUPPORTER, OR MULTIPLE 1416 00:46:17,007 --> 00:46:18,408 PEOPLE, THEN ASSESSING WITH THAT 1417 00:46:18,475 --> 00:46:19,610 PERSON IN THE ROOM. 1418 00:46:19,676 --> 00:46:20,911 ESPECIALLY WHEN YOU GET TO SORT 1419 00:46:20,978 --> 00:46:23,981 OF THE MORE COMPLEX ISSUES ABOUT 1420 00:46:24,047 --> 00:46:25,082 THE PARTICULAR RESEARCH PROTOCOL 1421 00:46:25,149 --> 00:46:29,720 AND WHAT IT MIGHT INVOLVE. 1422 00:46:29,786 --> 00:46:30,287 >> THANKS. 1423 00:46:30,354 --> 00:46:30,921 YES? 1424 00:46:30,988 --> 00:46:31,622 >> HI. 1425 00:46:31,688 --> 00:46:32,789 IS THIS ON? 1426 00:46:32,856 --> 00:46:34,625 >> I THINK YOU'RE GOOD. 1427 00:46:34,691 --> 00:46:35,492 >> HI. 1428 00:46:35,559 --> 00:46:37,361 I ENJOYED BOTH OF YOUR 1429 00:46:37,427 --> 00:46:38,128 DISCUSSIONS. 1430 00:46:38,195 --> 00:46:44,568 I JUST WANTED TO ASK, SO, IN 1431 00:46:44,635 --> 00:46:49,306 SITUATIONS WHERE CONSENT IS -- 1432 00:46:49,373 --> 00:46:50,507 WHERE A PATIENT'S CONSENT, MAYBE 1433 00:46:50,574 --> 00:46:53,110 THERE'S A CHANGE IN THEIR 1434 00:46:53,177 --> 00:46:54,111 SURROGATE'S ABILITY TO CONSENT, 1435 00:46:54,178 --> 00:46:58,715 WHAT WOULD YOU DO OR HOW WOULD 1436 00:46:58,782 --> 00:47:00,684 YOU ALTER THE PATIENT'S DATA? 1437 00:47:00,751 --> 00:47:02,219 COULD YOU STILL OBTAIN DATA FROM 1438 00:47:02,286 --> 00:47:02,419 THEM? 1439 00:47:02,486 --> 00:47:03,954 DO YOU HAVE TO THROW OUT THE 1440 00:47:04,021 --> 00:47:04,154 DATA? 1441 00:47:04,221 --> 00:47:07,124 WHAT WOULD YOU HAVE TO DO IN 1442 00:47:07,191 --> 00:47:07,524 THOSE SITUATIONS? 1443 00:47:07,591 --> 00:47:08,725 >> DID YOU WANT TO -- 1444 00:47:08,792 --> 00:47:09,526 >> EITHER WAY. 1445 00:47:09,593 --> 00:47:10,227 >> YOU START. 1446 00:47:10,294 --> 00:47:11,361 >> I MEAN, I THINK PART OF THE 1447 00:47:11,428 --> 00:47:14,031 QUESTION IS WHAT HAVE YOU GOTTEN 1448 00:47:14,097 --> 00:47:18,936 CONSENT TO AT THE ORIGINAL 1449 00:47:19,002 --> 00:47:20,037 MOMENT, RIGHT? 1450 00:47:20,103 --> 00:47:21,672 SO, IT SUGGESTS THAT WHEN YOU 1451 00:47:21,738 --> 00:47:22,873 GET THAT INITIAL CONSENT YOU 1452 00:47:22,940 --> 00:47:26,043 WANT TO MAKE SURE YOU'RE LAYING 1453 00:47:26,109 --> 00:47:27,244 OUT NOT ONLY THIS PARTICULAR 1454 00:47:27,311 --> 00:47:29,880 THING WE'RE GOING TO DO NEXT BUT 1455 00:47:29,947 --> 00:47:32,282 THE CORE OF RESEARCH. 1456 00:47:32,349 --> 00:47:35,686 SO, WE ALLOW PEOPLE TO MAKE 1457 00:47:35,752 --> 00:47:40,624 CHOICES FOR THEIR FUTURE SELVES, 1458 00:47:40,691 --> 00:47:44,661 AT LEAST TO THE EXTENT THAT THE 1459 00:47:44,728 --> 00:47:49,266 SUBJECT IS NOT THEN OBJECTING 1460 00:47:49,333 --> 00:47:51,368 LATER ON THAT INITIAL CONSENT 1461 00:47:51,435 --> 00:47:53,303 SHOULD BE GOOD ENOUGH. 1462 00:47:53,370 --> 00:47:56,039 THE INTERESTING QUESTION OF 1463 00:47:56,106 --> 00:47:57,808 COURSE ARISES WHEN THE 1464 00:47:57,874 --> 00:47:59,910 INDIVIDUAL EXPRESSES SOMETHING 1465 00:47:59,977 --> 00:48:01,845 DIFFERENT PART WAY THROUGH. 1466 00:48:01,912 --> 00:48:04,481 AND THERE, THERE ARE SOME 1467 00:48:04,548 --> 00:48:05,582 INTERESTING LEGAL ISSUES, BUT AS 1468 00:48:05,649 --> 00:48:08,218 A PRACTICAL ISSUE I WOULD 1469 00:48:08,285 --> 00:48:10,387 SUGGEST THAT IT STOPS. 1470 00:48:10,454 --> 00:48:11,255 >> OKAY. 1471 00:48:11,321 --> 00:48:14,258 AND THEN CAN I ALSO JUST ASK 1472 00:48:14,324 --> 00:48:15,759 ANOTHER QUESTION? 1473 00:48:15,826 --> 00:48:16,627 >> SURE. 1474 00:48:16,693 --> 00:48:18,061 >> SO, YOU SAID THAT THEY 1475 00:48:18,128 --> 00:48:21,999 WERE -- THAT THESE LAWS WERE 1476 00:48:22,065 --> 00:48:24,201 OFTEN BASED OFF OF WHETHER A 1477 00:48:24,268 --> 00:48:27,237 PATIENT IS ABLE TO HAVE 1478 00:48:27,304 --> 00:48:28,338 SUPPORTED DECISION-MAKING WITHIN 1479 00:48:28,405 --> 00:48:29,773 CERTAIN STATES, CORRECT? 1480 00:48:29,840 --> 00:48:32,075 >> SO IN EVERY STATE, IN EVERY 1481 00:48:32,142 --> 00:48:34,378 COUNTRY, A PERSON CAN USE 1482 00:48:34,444 --> 00:48:37,881 SUPPORT IN MAKING DECISIONS. 1483 00:48:37,948 --> 00:48:42,719 THE QUESTION BECOMES, DOES THE 1484 00:48:42,786 --> 00:48:44,321 FACT THAT THE INDIVIDUAL HAS 1485 00:48:44,388 --> 00:48:47,257 MADE SOME AGREEMENT WITH A 1486 00:48:47,324 --> 00:48:49,126 SUPPORTED HAVE INDEPENDENT LEGAL 1487 00:48:49,192 --> 00:48:50,994 EFFECT, AND IN SOME STATES IT 1488 00:48:51,061 --> 00:48:51,695 DOES. 1489 00:48:51,762 --> 00:48:53,964 I THINK IT'S ACTUALLY QUITE 1490 00:48:54,031 --> 00:48:55,599 PROBLEMATIC WITH SOME STATES 1491 00:48:55,666 --> 00:48:56,700 GIVING THAT EFFECT, WE COULD 1492 00:48:56,767 --> 00:48:58,135 TALK ABOUT THAT. 1493 00:48:58,201 --> 00:49:00,237 BUT REGARDLESS OF WHETHER A 1494 00:49:00,304 --> 00:49:02,839 STATE HAS LEGISLATION IN PLACE 1495 00:49:02,906 --> 00:49:04,274 THAT GIVES FORMAL RECOGNITION TO 1496 00:49:04,341 --> 00:49:06,143 THE AGREEMENT, AND THOSE 1497 00:49:06,209 --> 00:49:07,444 ACTUALLY START WITH 1498 00:49:07,511 --> 00:49:09,012 REPRESENTATION AGREEMENTS IN 1499 00:49:09,079 --> 00:49:11,381 BRITISH COLUMBIA MANY YEARS AGO, 1500 00:49:11,448 --> 00:49:14,051 REGARDLESS OF THAT, AN 1501 00:49:14,117 --> 00:49:15,452 INDIVIDUAL CAN USE SUPPORT. 1502 00:49:15,519 --> 00:49:16,086 >> OKAY. 1503 00:49:16,153 --> 00:49:16,653 THANK YOU. 1504 00:49:16,720 --> 00:49:18,188 >> I SAY TWO QUICK THINGS. 1505 00:49:18,255 --> 00:49:21,058 YOUR SECOND QUESTION FIRST IS 1506 00:49:21,124 --> 00:49:22,793 JUST THAT WHAT THE FEDERAL 1507 00:49:22,859 --> 00:49:24,861 REGULATIONS SAY IS THAT YOU HAVE 1508 00:49:24,928 --> 00:49:27,497 TO -- RESEARCHERS HAVE TO GET 1509 00:49:27,564 --> 00:49:29,499 CONSENT FROM THE PARTICIPANT, OR 1510 00:49:29,566 --> 00:49:30,867 THEIR LEGALLY AUTHORIZED 1511 00:49:30,934 --> 00:49:31,234 REPRESENTATIVE. 1512 00:49:31,301 --> 00:49:33,837 THAT'S PRETTY MUCH ALL THAT THE 1513 00:49:33,904 --> 00:49:35,072 FEDERAL REGULATIONS SAY. 1514 00:49:35,138 --> 00:49:45,682 IN TERMS OF WHO CAN COUNTS AS A 1515 00:49:47,351 --> 00:49:47,918 LEGALLY AUTHORIZED 1516 00:49:47,984 --> 00:49:49,286 REPRESENTATIVE, DEFER TO STATE 1517 00:49:49,353 --> 00:49:52,556 LAW, ENDS UP BEING UP TO THE 1518 00:49:52,622 --> 00:49:52,789 STATES. 1519 00:49:52,856 --> 00:49:55,092 FOR YOUR FIRST ONE IF THINGS 1520 00:49:55,158 --> 00:49:59,463 CHANGE, AS NINA SAID, IF YOU GET 1521 00:49:59,529 --> 00:50:01,331 UP-FRONT CONSENT TO SUBSEQUENT 1522 00:50:01,398 --> 00:50:02,733 PROCEDURES, THEN YOU HAVE 1523 00:50:02,799 --> 00:50:05,202 CONSENT FOR THOSE, AS LONG AS 1524 00:50:05,268 --> 00:50:08,238 THE PERSON DOESN'T DISSENT. 1525 00:50:08,305 --> 00:50:09,506 THE PROBLEM, WHERE SUPPORTED 1526 00:50:09,573 --> 00:50:10,374 DECISION-MAKING OBJECTION MIGHT 1527 00:50:10,440 --> 00:50:14,277 COME IN, IF I HAVE EARLY 1528 00:50:14,344 --> 00:50:15,812 COGNITIVE IMPAIRMENTS, MILD, 1529 00:50:15,879 --> 00:50:17,347 WORRIES ABOUT ME GETTING 1530 00:50:17,414 --> 00:50:19,282 DEMENTIA, I SIGN INTO THIS STUDY 1531 00:50:19,349 --> 00:50:20,283 THAT'S TEN YEARS, I WANT TO STAY 1532 00:50:20,350 --> 00:50:21,084 IN THE STUDY. 1533 00:50:21,151 --> 00:50:23,019 I'M IN IT FOR A COUPLE YEARS, 1534 00:50:23,086 --> 00:50:25,756 THEN THE DEMENTIA KICKS IN AND I 1535 00:50:25,822 --> 00:50:27,391 CAN NO LONGER CONSENT FOR 1536 00:50:27,457 --> 00:50:27,891 MYSELF. 1537 00:50:27,958 --> 00:50:29,025 AT THAT POINT UNDER CURRENT 1538 00:50:29,092 --> 00:50:31,661 GUIDANCE I HAVE TO NOW HAVE A 1539 00:50:31,728 --> 00:50:33,196 SURROGATE WHO HELPS MAKE 1540 00:50:33,263 --> 00:50:34,164 DECISIONS FOR ME. 1541 00:50:34,231 --> 00:50:36,466 I'M ONLY ALLOWED TO STAY IN THAT 1542 00:50:36,533 --> 00:50:40,003 STUDY NOW IF MY SURROGATE 1543 00:50:40,070 --> 00:50:40,570 AGREES. 1544 00:50:40,637 --> 00:50:41,705 SURROGATE CAN SAY, NO, TAKE HIM 1545 00:50:41,772 --> 00:50:43,373 OUT NOW AND THEY WILL HAVE TO BE 1546 00:50:43,440 --> 00:50:43,640 TAKEN OUT. 1547 00:50:43,707 --> 00:50:46,109 YOU MIGHT HAVE THIS WORRY OF IS 1548 00:50:46,176 --> 00:50:47,077 THAT RESPECTFUL? 1549 00:50:47,144 --> 00:50:49,179 I'M NO LONGER IN THE DRIVER'S 1550 00:50:49,246 --> 00:50:52,349 SEAT ANYMORE, AT LEAST ACCORDING 1551 00:50:52,416 --> 00:50:54,751 TO CURRENT PRACTICE. 1552 00:50:54,818 --> 00:50:54,985 SASKIA? 1553 00:50:55,051 --> 00:50:56,086 >> YES, THANK YOU. 1554 00:50:56,153 --> 00:50:58,288 THIS IS GREAT. 1555 00:50:58,355 --> 00:51:00,991 I FULLY SUPPORT THE FIRST 1556 00:51:01,057 --> 00:51:02,559 CONCEPTUAL MODEL OF FACILITATING 1557 00:51:02,626 --> 00:51:04,327 SOMEONE'S CAPACITY TO MAKE 1558 00:51:04,394 --> 00:51:05,328 DECISIONS. 1559 00:51:05,395 --> 00:51:08,665 I GUESS MY QUESTION WAS THEN IN 1560 00:51:08,732 --> 00:51:16,139 SOME WAYS A FOLLOW-UP OF DAVE'S 1561 00:51:16,206 --> 00:51:16,807 CAPACITY ASSESSMENT MYSELF, FOR 1562 00:51:16,873 --> 00:51:18,575 EXAMPLE IF YOU LOOK AT THE 1563 00:51:18,642 --> 00:51:20,310 DESIRED LEVEL OF UNDERSTANDING, 1564 00:51:20,377 --> 00:51:23,280 IF IT'S THE SHARED 1565 00:51:23,346 --> 00:51:24,381 UNDERSTANDING OF THE PERSON AND 1566 00:51:24,448 --> 00:51:25,882 THE SUPPORT PERSON THAT MATTERS, 1567 00:51:25,949 --> 00:51:28,852 I GUESS MY WORRY IS THAT WILL BE 1568 00:51:28,919 --> 00:51:32,789 I GUESS A LOWER LEVEL OF 1569 00:51:32,856 --> 00:51:33,990 PROTECTION FOR THE INDIVIDUAL 1570 00:51:34,057 --> 00:51:36,359 BECAUSE LET'S SAY IT'S MYSELF 1571 00:51:36,426 --> 00:51:38,695 AND I'M SUPPORTING MY MOTHER, 1572 00:51:38,762 --> 00:51:40,564 AND I'M TRAINED AS A PHYSICIAN, 1573 00:51:40,630 --> 00:51:41,898 I REALLY UNDERSTAND THE STUDY, 1574 00:51:41,965 --> 00:51:44,501 AND TOGETHER WE REALLY 1575 00:51:44,568 --> 00:51:47,571 UNDERSTAND THE STUDY TO 1576 00:51:47,637 --> 00:51:49,639 APPROPRIATE DEGREE, IT'S JUST 1577 00:51:49,706 --> 00:51:54,044 SHE DOESN'T REALLY UNDERSTAND 1578 00:51:54,110 --> 00:51:54,211 IT. 1579 00:51:54,277 --> 00:51:57,214 IT'S JUST WITH MY ADDITIONS WE 1580 00:51:57,280 --> 00:51:58,081 REACH THIS THRESHOLD. 1581 00:51:58,148 --> 00:52:00,717 YOU CAN SUSS THAT OUT IN A 1582 00:52:00,784 --> 00:52:02,018 SECOND SEPARATE CONVERSATION 1583 00:52:02,085 --> 00:52:05,188 WITH JUST MY MOTHER, BUT THEN 1584 00:52:05,255 --> 00:52:07,591 CONCEPTUALLY IT'S THE JOINT 1585 00:52:07,657 --> 00:52:08,625 UNDERSTANDING THAT COUNTS. 1586 00:52:08,692 --> 00:52:11,127 I GUESS I'M STILL WORRIED ABOUT 1587 00:52:11,194 --> 00:52:13,396 THE PROTECTIONS FOR, IN THIS 1588 00:52:13,463 --> 00:52:14,397 CASE, MY MOTHER. 1589 00:52:14,464 --> 00:52:16,032 >> I WOULD BE TOO. 1590 00:52:16,099 --> 00:52:17,667 I DON'T THINK SHARED 1591 00:52:17,734 --> 00:52:19,769 UNDERSTANDING IS ENOUGH. 1592 00:52:19,836 --> 00:52:22,506 THE QUESTION IS ONCE YOU HAVE 1593 00:52:22,572 --> 00:52:24,574 THE DIALOGUE WITH YOUR MOTHER, 1594 00:52:24,641 --> 00:52:25,976 WHERE DOES HER UNDERSTANDING END 1595 00:52:26,042 --> 00:52:26,776 UP? 1596 00:52:26,843 --> 00:52:28,011 RIGHT? 1597 00:52:28,078 --> 00:52:31,147 SO IT MAY BE THAT AT POINT A, 1598 00:52:31,214 --> 00:52:32,415 RIGHT, BEFORE THE DISCUSSION, 1599 00:52:32,482 --> 00:52:34,084 LET'S IMAGINE YOU'RE HER 1600 00:52:34,150 --> 00:52:35,652 SUPPORTER, HER UNDERSTANDING IS 1601 00:52:35,719 --> 00:52:38,054 TOO LOW TO PROCEED. 1602 00:52:38,121 --> 00:52:40,790 THEN THE QUESTION IS, AFTER THAT 1603 00:52:40,857 --> 00:52:43,660 SUPPORT THAT YOU PROVIDED, WHERE 1604 00:52:43,727 --> 00:52:44,628 IS SHE NOW? 1605 00:52:44,694 --> 00:52:47,364 AND THAT'S THE MODEL I WANT TO 1606 00:52:47,430 --> 00:52:48,365 SEE, RIGHT? 1607 00:52:48,431 --> 00:52:51,201 WHERE WE ASK WHERE IS SHE AFTER 1608 00:52:51,268 --> 00:52:52,969 THE SUPPORT AS OPPOSED TO 1609 00:52:53,036 --> 00:52:54,871 PRE-SUPPORT, NOT, YOU KNOW, DO 1610 00:52:54,938 --> 00:52:57,507 WE HAVE ENOUGH KNOWLEDGE WHEN WE 1611 00:52:57,574 --> 00:52:59,175 ADD YOU IN. 1612 00:52:59,242 --> 00:53:01,278 >> YEAH, AND I'LL SAY I THINK I 1613 00:53:01,344 --> 00:53:02,846 HAVE THE SAME QUESTION, SO I 1614 00:53:02,913 --> 00:53:07,117 DON'T HAVE AN ANSWER, BUT SOME 1615 00:53:07,183 --> 00:53:07,817 PEOPLE DESCRIBE SUPPORTED 1616 00:53:07,884 --> 00:53:08,652 DECISION-MAKING IN TERMS OF 1617 00:53:08,718 --> 00:53:11,288 RATHER THAN ASSESSING WHEN WE DO 1618 00:53:11,354 --> 00:53:12,389 CAPACITY ASSESSMENT, IS THERE 1619 00:53:12,455 --> 00:53:13,890 SUFFICIENT UNDERSTANDING IN THIS 1620 00:53:13,957 --> 00:53:15,992 ONE HEAD, WHAT WE SHOULD BE 1621 00:53:16,059 --> 00:53:18,728 DOING IS ASSESSING IS THERE 1622 00:53:18,795 --> 00:53:21,998 SUFFICIENT CAPACITY ACROSS BOTH 1623 00:53:22,065 --> 00:53:22,666 OF THEM. 1624 00:53:22,732 --> 00:53:24,534 AND THAT SOUNDS GOOD, THEN I 1625 00:53:24,601 --> 00:53:26,937 THINK BIT, I'M NOT REALLY SURE I 1626 00:53:27,003 --> 00:53:28,471 UNDERSTAND WHAT THAT MEANS. 1627 00:53:28,538 --> 00:53:30,206 >> THERE YOU'VE JUST REMOVED THE 1628 00:53:30,273 --> 00:53:32,609 CRITICAL PROTECTION, IN MY MIND. 1629 00:53:32,676 --> 00:53:32,909 >> HOLLY? 1630 00:53:32,976 --> 00:53:33,944 >> YES, HI. 1631 00:53:34,010 --> 00:53:36,246 I'M ASKING A QUESTION ON BEHALF 1632 00:53:36,313 --> 00:53:36,780 OF EDWARD. 1633 00:53:36,846 --> 00:53:38,214 AND THIS IS THIS HAS BEEN 1634 00:53:38,281 --> 00:53:42,586 ADDRESSED IN A COUPLE WAYS, BUT 1635 00:53:42,652 --> 00:53:44,454 BASICALLY EDWARD ASKS, DO WE 1636 00:53:44,521 --> 00:53:46,523 SCREEN ALL POTENTIAL SUBJECTS 1637 00:53:46,590 --> 00:53:47,958 FOR CAPACITY? 1638 00:53:48,024 --> 00:53:50,894 IF SO, USING WHAT TOOLS OR IF 1639 00:53:50,961 --> 00:53:52,529 NOT, WHY NOT? 1640 00:53:52,596 --> 00:53:53,797 AND THEN APPLYING WHAT STANDARDS 1641 00:53:53,863 --> 00:53:56,933 AND WHAT IS THE THRESHOLD FOR 1642 00:53:57,000 --> 00:53:58,335 NORMAL, QUOTE/UNQUOTE, AS 1643 00:53:58,401 --> 00:54:02,606 OPPOSED TO IRAQ SUPPORT FOR 1644 00:54:02,672 --> 00:54:04,374 SPECIAL PROTECTION. 1645 00:54:04,441 --> 00:54:06,443 >> WELL, I'LL GIVE YOU MY 1646 00:54:06,509 --> 00:54:08,612 EXPERIENCE. 1647 00:54:08,678 --> 00:54:10,880 DO WE DO A CAPACITY ASSESSMENT 1648 00:54:10,947 --> 00:54:11,915 FOR EVERYBODY? 1649 00:54:11,982 --> 00:54:13,516 THE ANSWER IS CLEARLY NO. 1650 00:54:13,583 --> 00:54:15,318 >> IT MIGHT BE A LITTLE 1651 00:54:15,385 --> 00:54:15,619 RHETORICAL. 1652 00:54:15,685 --> 00:54:20,991 I DON'T GET THAT EXACTLY FROM 1653 00:54:21,057 --> 00:54:22,959 EDWARD'S QUESTION. 1654 00:54:23,026 --> 00:54:25,161 HE'S SAYING ON BOARD WITH 1655 00:54:25,228 --> 00:54:26,463 DECISION MAKING PIECES YOU 1656 00:54:26,529 --> 00:54:28,765 PICKED UP WHY AREN'T WE DOING IT 1657 00:54:28,832 --> 00:54:30,066 FOR EVERYBODY IF IT'S SO 1658 00:54:30,133 --> 00:54:30,634 IMPORTANT. 1659 00:54:30,700 --> 00:54:30,967 >> EXACTLY. 1660 00:54:31,034 --> 00:54:33,036 AND MY SENSE IS TYPICALLY THE 1661 00:54:33,103 --> 00:54:35,338 DEFAULT IS THAT YOU ASSUME AN 1662 00:54:35,405 --> 00:54:37,173 ADULT HAS CAPACITY, CAN MAKE 1663 00:54:37,240 --> 00:54:39,476 THEIR OWN DECISIONS, AND THAT 1664 00:54:39,542 --> 00:54:40,810 DEFAULT ONLY GETS QUESTIONED IF 1665 00:54:40,877 --> 00:54:42,312 THERE'S SOME REASON TO QUESTION 1666 00:54:42,379 --> 00:54:42,545 IT. 1667 00:54:42,612 --> 00:54:46,449 LIKE SOMETIMES IT'S A DIAGNOSIS, 1668 00:54:46,516 --> 00:54:48,652 OR OTHER TIMES THEY ARE TALKING 1669 00:54:48,718 --> 00:54:50,286 TO ADMISSIONS PEOPLE AT 1670 00:54:50,353 --> 00:54:51,421 ADMISSIONS DESK OR TALKING TO 1671 00:54:51,488 --> 00:54:53,823 THE NURSE AT THE INITIAL NURSING 1672 00:54:53,890 --> 00:54:55,025 ASSESSMENT, THE NURSE SAYS THEY 1673 00:54:55,091 --> 00:54:56,192 STARTED SAYING THINGS THAT 1674 00:54:56,259 --> 00:54:58,294 DIDN'T MAKE SENSE, AND THAT 1675 00:54:58,361 --> 00:55:01,131 MIGHT TRIGGER A CAPACITY 1676 00:55:01,197 --> 00:55:02,799 ASSESSMENT. 1677 00:55:02,866 --> 00:55:04,534 BUT ONE AX TO GRIND, DIDN'T 1678 00:55:04,601 --> 00:55:06,703 GRIND IT VERY MUCH, I WROTE A 1679 00:55:06,770 --> 00:55:08,238 PAPER A LONG TIME AGO SATISFYING 1680 00:55:08,304 --> 00:55:10,006 WE HAVE ALL THIS WORRY WHETHER 1681 00:55:10,073 --> 00:55:11,741 PEOPLE ARE CAPACITY AND ARE ABLE 1682 00:55:11,808 --> 00:55:12,842 TO UNDERSTAND, BUT AT THE SAME 1683 00:55:12,909 --> 00:55:14,811 TIME WE HAVE ALL THIS DATA THAT 1684 00:55:14,878 --> 00:55:16,680 PEOPLE WHO HAVE PERFECT CAPACITY 1685 00:55:16,746 --> 00:55:17,614 ACTUALLY DON'T UNDERSTAND IN 1686 00:55:17,681 --> 00:55:17,914 PRACTICE. 1687 00:55:17,981 --> 00:55:21,518 THEY ARE NOT PAYING ATTENTION, 1688 00:55:21,584 --> 00:55:23,687 THEY DIDN'T GET IT. 1689 00:55:23,753 --> 00:55:28,391 MY RESPONSE IS SHOULD MAKE SURE 1690 00:55:28,458 --> 00:55:29,826 EVERYBODY UNDERSTANDS, I'M WITH 1691 00:55:29,893 --> 00:55:30,360 EDWARD. 1692 00:55:30,427 --> 00:55:32,662 THERE'S A SIMPLE PROCESS TO DO A 1693 00:55:32,729 --> 00:55:34,230 QUICK INFORMAL ASSESSMENT OF 1694 00:55:34,297 --> 00:55:34,964 EVERYBODY, WHETHER THEY HAVE 1695 00:55:35,031 --> 00:55:36,199 ALZHEIMER'S DISEASE OR THEY ARE 1696 00:55:36,266 --> 00:55:39,135 JUST TIRED OR NOT PAYING 1697 00:55:39,202 --> 00:55:40,336 ATTENTION, AND THAT I'M JUST 1698 00:55:40,403 --> 00:55:43,406 GOING TO SAY THAT PAPER, EDWARD, 1699 00:55:43,473 --> 00:55:44,274 DIDN'T CATCH SERIOUS FIRE. 1700 00:55:44,340 --> 00:55:44,708 [LAUGHTER] 1701 00:55:44,774 --> 00:55:47,777 >> THANK YOU ON BEHALF OF 1702 00:55:47,844 --> 00:55:48,044 EDWARD. 1703 00:55:48,111 --> 00:55:49,612 >> I THINK HONESTLY YOU'RE DOING 1704 00:55:49,679 --> 00:55:52,148 A CAPACITY ASSESSMENT EVERY TIME 1705 00:55:52,215 --> 00:55:54,084 YOU ENROLL SOMEBODY, YOU MADE AN 1706 00:55:54,150 --> 00:55:54,384 ASSESSMENT. 1707 00:55:54,451 --> 00:55:56,352 THE QUESTION, HAVE YOU DONE 1708 00:55:56,419 --> 00:55:59,355 ANYTIME A DELIBERATIVE AND 1709 00:55:59,422 --> 00:56:00,857 THOUGHTFUL WAY OR BASED ON 1710 00:56:00,924 --> 00:56:01,191 ASSUMPTION. 1711 00:56:01,257 --> 00:56:04,994 I SAY TO MY LAW STUDENTS, 1712 00:56:05,061 --> 00:56:06,963 ANYTIME YOU REPRESENT A CLIENT, 1713 00:56:07,030 --> 00:56:08,498 YOU'VE MADE AN ASSESSMENT THEY 1714 00:56:08,565 --> 00:56:09,466 HAVE CAPACITY TO RETAIN YOU. 1715 00:56:09,532 --> 00:56:13,336 THE QUESTION IS HAVE YOU DONE IT 1716 00:56:13,403 --> 00:56:13,636 WELL. 1717 00:56:13,703 --> 00:56:16,706 BUT I DO THINK, YOU KNOW, WHEN 1718 00:56:16,773 --> 00:56:19,008 WE THINK ABOUT WHAT THIS CAN DO 1719 00:56:19,075 --> 00:56:22,512 IS POTENTIALLY IDENTIFY FOR ALL 1720 00:56:22,579 --> 00:56:24,147 SUBJECTS ARE THERE PEOPLE WHO 1721 00:56:24,214 --> 00:56:25,582 CAN HELP THEM UNDERSTAND WHAT'S 1722 00:56:25,648 --> 00:56:26,116 HAPPENING? 1723 00:56:26,182 --> 00:56:28,084 AND THAT CAN BE A QUESTION THAT 1724 00:56:28,151 --> 00:56:31,020 COULD BE ASKED OF PEOPLE WITH NO 1725 00:56:31,087 --> 00:56:32,589 IDENTIFIED DISABILITY AND MIGHT 1726 00:56:32,655 --> 00:56:34,157 ENHANCE INFORMED CONSENT IN A 1727 00:56:34,224 --> 00:56:37,527 UNIVERSAL DESIGN WAY, IF YOU 1728 00:56:37,594 --> 00:56:37,727 WILL. 1729 00:56:37,794 --> 00:56:38,094 >> DR. GALLIN? 1730 00:56:38,161 --> 00:56:40,063 >> THANK YOU TO BOTH OF YOU FOR 1731 00:56:40,130 --> 00:56:40,797 THE GREAT SESSION. 1732 00:56:40,864 --> 00:56:44,234 I WANT TO TAKE THIS CAPACITY 1733 00:56:44,300 --> 00:56:46,603 QUESTION A LITTLE FURTHER. 1734 00:56:46,669 --> 00:56:50,440 TO ME, WHEN I LISTEN TO YOU, IT 1735 00:56:50,507 --> 00:56:51,841 SOUNDS LIKE YOU'RE MAKING 1736 00:56:51,908 --> 00:56:53,977 ASSESSMENT OR EVALUATION OF 1737 00:56:54,043 --> 00:56:57,213 COGNITIVE SKILL SETS OF THE 1738 00:56:57,280 --> 00:56:57,680 SUBJECT. 1739 00:56:57,747 --> 00:57:00,817 AND SO THE QUESTION WAS RAISED, 1740 00:57:00,884 --> 00:57:04,754 IS THIS A PRECISE TOOL, SO 1741 00:57:04,821 --> 00:57:06,122 PRECISE THE INVESTIGATOR COULD 1742 00:57:06,189 --> 00:57:09,592 USE IT AS PART OF THE EVALUATION 1743 00:57:09,659 --> 00:57:11,995 OF THE SUBJECT OVER TIME? 1744 00:57:12,061 --> 00:57:13,329 BUT MORE IMPORTANTLY, IF YOU 1745 00:57:13,396 --> 00:57:16,366 THINK YOU GOT A REALLY GOOD 1746 00:57:16,432 --> 00:57:19,335 MEASURE OF COGNITIVE SKILL SET, 1747 00:57:19,402 --> 00:57:22,172 AS THE LAST FEW MINUTES MAYBE 1748 00:57:22,238 --> 00:57:23,907 SUGGESTED, IT MIGHT BE 1749 00:57:23,973 --> 00:57:26,976 APPLICABLE IN MUCH MORE 1750 00:57:27,043 --> 00:57:29,045 SITUATIONS THAN I'LL SAY JUST 1751 00:57:29,112 --> 00:57:29,813 CLINICAL RESEARCH. 1752 00:57:29,879 --> 00:57:31,147 SO FOR EXAMPLE, WHEN I WAS 1753 00:57:31,214 --> 00:57:34,884 DIRECTOR OF THE CLINICAL CENTER, 1754 00:57:34,951 --> 00:57:37,086 WE WENT THROUGH AN EXERCISE 1755 00:57:37,153 --> 00:57:39,722 THINKING ABOUT SHOULD WE DO 1756 00:57:39,789 --> 00:57:41,691 COGNITIVE OF ALL PHYSICIANS WHEN 1757 00:57:41,758 --> 00:57:43,459 THEY REACH A CERTAIN AGE? 1758 00:57:43,526 --> 00:57:45,762 IF SO, CAN DO YOU THAT? 1759 00:57:45,829 --> 00:57:50,033 I CAN TELL AT STAND FORD UNDER 1760 00:57:50,099 --> 00:57:54,938 PHIL PEZO AS DEAN HE IMPLEMENTED 1761 00:57:55,004 --> 00:57:56,706 IS THAT, SHOULD THEY CONTINUE TO 1762 00:57:56,773 --> 00:57:58,241 BE CARE PROVIDERS, HAVING 1763 00:57:58,308 --> 00:58:00,643 WITNESSED A FEW PHYSICIANS WHO 1764 00:58:00,710 --> 00:58:02,212 DETERIORATED ON THE JOB, THAT'S 1765 00:58:02,278 --> 00:58:03,279 AN IMPORTANT QUESTION. 1766 00:58:03,346 --> 00:58:03,780 >> ABSOLUTELY. 1767 00:58:03,847 --> 00:58:06,983 >> DO YOU HAVE A REALLY GOOD 1768 00:58:07,050 --> 00:58:07,984 COGNITIVE SKILL SET TOOL THAT 1769 00:58:08,051 --> 00:58:10,286 ONE COULD BE USED NOT ONLY TO 1770 00:58:10,353 --> 00:58:12,355 ASSESS ALL THE ISSUES YOU JUST 1771 00:58:12,422 --> 00:58:16,492 RAISED WHICH ARE SO IMPORTANT 1772 00:58:16,559 --> 00:58:18,161 BUT ALSO THE INVESTIGATOR 1773 00:58:18,228 --> 00:58:20,797 COMPARING FOR PATIENTS USE THAT 1774 00:58:20,864 --> 00:58:22,265 TOOL GOING NOT ONLY IN THE 1775 00:58:22,332 --> 00:58:24,067 IMMEDIATE PRESENCE BUT IN THE 1776 00:58:24,133 --> 00:58:27,036 FUTURE, AND THEN EVEN FOR 1777 00:58:27,103 --> 00:58:28,671 BROADER COGNITIVE ASSESSMENT 1778 00:58:28,738 --> 00:58:30,540 QUESTIONS. 1779 00:58:30,607 --> 00:58:30,874 >> GREAT. 1780 00:58:30,940 --> 00:58:31,841 DR. GALLIN, THERE'S LOTS OF 1781 00:58:31,908 --> 00:58:33,610 OTHER QUESTIONS WE HAVE HERE. 1782 00:58:33,676 --> 00:58:36,012 LET'S MAKE THIS EVEN HARDER. 1783 00:58:36,079 --> 00:58:39,616 NINA, DO YOU WANT TO GO FIRST? 1784 00:58:39,682 --> 00:58:41,251 >> I WOULD SAY CAPACITY IS 1785 00:58:41,317 --> 00:58:44,621 DOMAIN SPECIFIC, RIGHT? 1786 00:58:44,687 --> 00:58:45,622 THERE ISN'T A UNIVERSAL CAPACITY 1787 00:58:45,688 --> 00:58:47,390 ASSESSMENT BECAUSE THERE ISN'T A 1788 00:58:47,457 --> 00:58:49,559 SINGLE DECISION WE'RE MAKING. 1789 00:58:49,626 --> 00:58:51,327 AND, YOU KNOW, IN SOMETIMES THE 1790 00:58:51,394 --> 00:58:52,896 LAW ITSELF WILL TELL WHAT YOU 1791 00:58:52,962 --> 00:58:55,064 THE LEVEL OF CAPACITY IS 1792 00:58:55,131 --> 00:58:55,331 REQUIRED. 1793 00:58:55,398 --> 00:58:56,699 I MEAN THE CAPACITY TO WRITE A 1794 00:58:56,766 --> 00:58:59,335 WILL IS DIFFERENT THAN CAPACITY 1795 00:58:59,402 --> 00:59:00,603 TO HAVE SURGERY. 1796 00:59:00,670 --> 00:59:02,305 AND SO I THINK ONE OF THE 1797 00:59:02,372 --> 00:59:04,707 PROBLEMS WE HAVE IN SORT OF 1798 00:59:04,774 --> 00:59:06,075 THINKING ABOUT CAPACITY 1799 00:59:06,142 --> 00:59:08,111 ASSESSMENT IS WE ASK THE WRONG 1800 00:59:08,177 --> 00:59:10,079 QUESTION, DOES SOMEBODY HAVE 1801 00:59:10,146 --> 00:59:12,815 CAPACITY, AS OPPOSED TO DOES THE 1802 00:59:12,882 --> 00:59:15,551 PERSON HAVE CAPACITY TO DO X. 1803 00:59:15,618 --> 00:59:18,955 AND TO GET IT MORE PRECISE, DOES 1804 00:59:19,022 --> 00:59:24,394 THE PERSON HAVE CAPACITY TO DO X 1805 00:59:24,460 --> 00:59:24,861 NOW. 1806 00:59:24,928 --> 00:59:26,362 >> ONE THOUGHT, I HAVE A LOT OF 1807 00:59:26,429 --> 00:59:27,697 THOUGHTS BUT WE'RE OUT OF TIME. 1808 00:59:27,764 --> 00:59:31,734 I'LL GIVE YOU ONE BEFORE WE END. 1809 00:59:31,801 --> 00:59:33,703 WHICH IS THAT I'VE BEEN STRUCK, 1810 00:59:33,770 --> 00:59:36,773 I'VE BEEN HERE A LONG TIME NOW, 1811 00:59:36,839 --> 00:59:39,943 AND I'VE BEEN STRUCK BY THE 1812 00:59:40,009 --> 00:59:41,711 EXTENT TO WHICH WHEN WE GET 1813 00:59:41,778 --> 00:59:43,813 CALLS AND WE GET CONSULTATIONS, 1814 00:59:43,880 --> 00:59:45,315 HOW OFTEN THEY ARE DRIVEN NOT 1815 00:59:45,381 --> 00:59:48,051 JUST BY I HAVE AN ETHICAL ISSUE 1816 00:59:48,117 --> 00:59:50,253 OR ETHICAL QUESTION BUT THERE'S 1817 00:59:50,320 --> 00:59:51,654 SOME POLICY OR SOME REQUIREMENT 1818 00:59:51,721 --> 00:59:53,723 THAT HAS TO GET IMPLEMENTED. 1819 00:59:53,790 --> 00:59:54,924 I THINK INFORMED CONSENT FOR 1820 00:59:54,991 --> 00:59:58,027 RESEARCH IS A GOOD EXAMPLE. 1821 00:59:58,094 --> 00:59:59,696 THERE'S CLEAR GUIDELINES, 1822 00:59:59,762 --> 01:00:01,664 REGULATIONS FOR GETTING INFORMED 1823 01:00:01,731 --> 01:00:03,633 CONSENT FOR RESEARCH, AND I 1824 01:00:03,700 --> 01:00:06,035 THINK WHAT THAT ENDS UP DOING, 1825 01:00:06,102 --> 01:00:08,338 IT ATTUNES PEOPLE TO THE ISSUES 1826 01:00:08,404 --> 01:00:09,105 IN THAT CONTEXT AND I THINK AS 1827 01:00:09,172 --> 01:00:12,041 FAR AS I KNOW WE DON'T HAVE 1828 01:00:12,108 --> 01:00:14,344 SOME -- BEFORE YOU GET TO INVITE 1829 01:00:14,410 --> 01:00:16,012 SOMEBODY TO ENROLL, IN A 1830 01:00:16,079 --> 01:00:18,181 RESEARCH TRIAL, YOU NEED TO 1831 01:00:18,247 --> 01:00:19,082 ANSWER CERTAIN QUESTIONS AND 1832 01:00:19,148 --> 01:00:21,150 HAVE SOME SORT OF CAPACITY. 1833 01:00:21,217 --> 01:00:24,020 SO IT DOESN'T EVEN COME UP IN A 1834 01:00:24,087 --> 01:00:27,957 WAY BUT I DON'T SEE ANY REASON 1835 01:00:28,024 --> 01:00:29,359 TO THINK THAT'S LESS IMPORTANT 1836 01:00:29,425 --> 01:00:30,893 IN THAT CONTEXT, MAYBE WE NEED 1837 01:00:30,960 --> 01:00:35,164 TO CREATE THEM FOR THESE OTHER 1838 01:00:35,231 --> 01:00:35,698 CONTEXTS. 1839 01:00:35,765 --> 01:00:36,232 HISTORICALLY FOR WHATEVER 1840 01:00:36,299 --> 01:00:37,600 HAPPENS, WE DON'T HAVE THEM AND 1841 01:00:37,667 --> 01:00:38,568 WE NEED THEM. 1842 01:00:38,634 --> 01:00:39,435 >> RIGHT. 1843 01:00:39,502 --> 01:00:43,606 >> IT'S A GREAT QUESTION. 1844 01:00:43,673 --> 01:00:43,806 OKAY. 1845 01:00:43,873 --> 01:00:47,210 SO, SORRY, WE HAVE MORE. 1846 01:00:47,276 --> 01:00:50,179 HOLLY WILL FORWARD THOSE TO ME. 1847 01:00:50,246 --> 01:00:52,682 IT'S GREAT TO SEE PEOPLE IN 1848 01:00:52,749 --> 01:00:53,349 PERSON, FIRST WEDNESDAY IN 1849 01:00:53,416 --> 01:00:55,318 APRIL, FOR ANYBODY WHO HAS 1850 01:00:55,385 --> 01:00:57,587 THOUGHTS ON HOW WE SHOULD 1851 01:00:57,653 --> 01:00:58,588 RESPECT THE DEAD. 1852 01:00:58,654 --> 01:01:00,423 IN THE MEANTIME PLEASE JOIN ME 1853 01:01:00,490 --> 01:01:01,991 IN THANKING NINA FOR A WONDERFUL 1854 01:01:02,058 SESSION.