1 00:00:05,004 --> 00:00:12,645 >> WELCOME TO DAY TWO OF THE 2 00:00:12,712 --> 00:00:14,447 NICHD STATE OF THE SCIENCE 3 00:00:14,514 --> 00:00:16,015 PEDIATRIC PALLIATIVE CARE 4 00:00:16,082 --> 00:00:17,217 CONFERENCE. 5 00:00:17,283 --> 00:00:18,718 I'M TESSIE OCTOBER THE 6 00:00:18,785 --> 00:00:20,787 PALLIATIVE CARE AND PHYSICIAN 7 00:00:20,854 --> 00:00:22,922 WHO SERVES AS THE MEDICAL 8 00:00:22,989 --> 00:00:24,624 OFFICER AT NICHD WITHIN THE 9 00:00:24,691 --> 00:00:26,793 PEDIATRIC TRAUMA AND CRITICAL 10 00:00:26,860 --> 00:00:27,594 ILLNESS BRANCH. 11 00:00:27,660 --> 00:00:33,600 WE HAVE AN EXCITING LINEUP OF 12 00:00:33,666 --> 00:00:36,669 PRESENTATIONS AND DISCUSSIONS. 13 00:00:36,736 --> 00:00:41,841 I'M EXCITED YOU'RE WITH US 14 00:00:41,908 --> 00:00:48,681 TODAY. 15 00:00:48,748 --> 00:00:50,383 THIS IS AN INTERACTIVE SECTION 16 00:00:50,450 --> 00:00:51,918 WHERE YOUR VOICE WILL BE 17 00:00:51,985 --> 00:00:53,720 IMPORTANT FOR GUIDING THE 18 00:00:53,787 --> 00:00:54,020 DISCUSSION. 19 00:00:54,087 --> 00:00:55,455 SEND QUESTIONS BY PRESSING THE 20 00:00:55,522 --> 00:00:59,459 LIVE FEEDBACK BUTTON ON THE 21 00:00:59,526 --> 00:01:00,427 LINK. 22 00:01:00,493 --> 00:01:02,796 THERE WILL BE A MODERATOR-RUN 23 00:01:02,862 --> 00:01:04,063 PANEL DISCUSSION AND Q&A AFTER 24 00:01:04,130 --> 00:01:05,365 EACH SESSION AND WE WILL GATHER 25 00:01:05,432 --> 00:01:07,400 YOUR QUESTIONS AS YOU SEND THEM 26 00:01:07,467 --> 00:01:12,505 IN AND THEN WE'LL DISCUSS THEM 27 00:01:12,572 --> 00:01:20,547 ALL AT ONCE. 28 00:01:20,613 --> 00:01:23,416 I ENCOURAGE YOU TO GET THE BIOS 29 00:01:23,483 --> 00:01:25,351 FROM THE SPEAKERS AND WE MAY NOT 30 00:01:25,418 --> 00:01:27,086 DESCRIBE THE FULL BODY OF WORK 31 00:01:27,153 --> 00:01:29,522 THEY'VE DONE BUT YOU CAN GO TO 32 00:01:29,589 --> 00:01:33,026 THE BOUGHTIES TO GET THEIR 33 00:01:33,092 --> 00:01:33,493 INFORMATION. 34 00:01:33,560 --> 00:01:41,201 IT'S MY HONOR TO WELCOME ROHAN 35 00:01:41,267 --> 00:01:43,870 HAZRA TO KICK OFF THE SESSION 36 00:01:43,937 --> 00:01:44,070 TODAY. 37 00:01:44,137 --> 00:01:46,506 >> GOOD AFTERNOON AND/OR GOOD 38 00:01:46,573 --> 00:01:49,709 MORNING OR GOOD EVENING. 39 00:01:49,776 --> 00:01:53,847 I'M ROHAN HAZRA THE DIRECTOR OF 40 00:01:53,913 --> 00:01:54,747 THE DIVISION OF EXTRAMURAL 41 00:01:54,814 --> 00:01:55,482 RESEARCH AT NICHD. 42 00:01:55,548 --> 00:01:57,884 AS DIRECTOR MY FOCUS IS ON 43 00:01:57,951 --> 00:01:58,485 DEVELOPING, IMPLEMENTING AND 44 00:01:58,551 --> 00:02:01,120 COORDINATING CROSS-CUTTING 45 00:02:01,187 --> 00:02:02,789 MULTI-DISCIPLINARY RESEARCH 46 00:02:02,856 --> 00:02:05,592 ACTIVITY WITHIN OUR MISSION. 47 00:02:05,658 --> 00:02:06,659 RESEARCH PORTFOLIO IS QUITE 48 00:02:06,726 --> 00:02:08,361 BROAD AND INCLUDES BIOLOGICAL 49 00:02:08,428 --> 00:02:10,630 AND BEHAVIORAL AND CLINICAL 50 00:02:10,697 --> 00:02:12,899 RESEARCH RELATED TO CONCEPTION 51 00:02:12,966 --> 00:02:16,536 AND PREGNANCY AND NORMAL AND AB 52 00:02:16,603 --> 00:02:18,004 NORMAL DEVELOPMENT AND 53 00:02:18,071 --> 00:02:19,439 REPRODUCTIVE LIFE AND DYNAMICS 54 00:02:19,506 --> 00:02:22,609 ACROSS THE LIFE SPAN. 55 00:02:22,675 --> 00:02:26,045 WE SUPPORT $1.2 BILLION WORTH OF 56 00:02:26,112 --> 00:02:27,647 RESEARCH THROUGH GRANTS AND 57 00:02:27,714 --> 00:02:31,117 SPENT 6% ON TRAINING PROGRAMS, 58 00:02:31,184 --> 00:02:34,120 THE DIR HAS 12 SCIENTIFIC BRANCH 59 00:02:34,187 --> 00:02:37,390 TO CARRY OUT THIS BROAD RESEARCH 60 00:02:37,457 --> 00:02:38,091 PORTFOLIO. 61 00:02:38,157 --> 00:02:39,926 THE ILLNESS BRANCH IS ONE OF 12 62 00:02:39,993 --> 00:02:40,793 DEDICATED TO SUPPORTING RESEARCH 63 00:02:40,860 --> 00:02:42,629 AND TRAINING FOCUSSED ON 64 00:02:42,695 --> 00:02:44,898 PREVENTING, TREATING AND 65 00:02:44,964 --> 00:02:46,933 REDUCING ALL FORMS OF CHILDHOOD 66 00:02:47,000 --> 00:02:48,801 TRAUMATIC INJURY AND CRITICAL 67 00:02:48,868 --> 00:02:50,670 ILLNESS ACROSS THE CONTINUUM OF 68 00:02:50,737 --> 00:02:50,870 CARE. 69 00:02:50,937 --> 00:02:52,171 EMBEDDED IN THE MISSION IS THE 70 00:02:52,238 --> 00:02:53,540 PRIORITY TO SUPPORT RESEARCH AND 71 00:02:53,606 --> 00:02:55,742 UNDERSTANDING THE EFFECTS OF 72 00:02:55,808 --> 00:02:56,743 PALLIATIVE CARE FOR SERIOUSLY 73 00:02:56,809 --> 00:03:00,847 ILL CHILDREN AND THEIR FAMILIES. 74 00:03:00,914 --> 00:03:04,350 BEFORE I CONTINUE I WANT TO 75 00:03:04,417 --> 00:03:06,786 ACKNOWLEDGE WHAT A TREMENDOUS 76 00:03:06,853 --> 00:03:10,790 JOB TESSIE HAS DONE IN LEADING 77 00:03:10,857 --> 00:03:12,392 THE EFFORT AND FOR THE PROGRAM 78 00:03:12,458 --> 00:03:13,860 CHIEF AND THE REST OF THE STAFF 79 00:03:13,927 --> 00:03:15,228 FROM THE BRANCH. 80 00:03:15,295 --> 00:03:18,064 I ACTUALLY HAVE THE PLEASURE OF 81 00:03:18,131 --> 00:03:19,365 BEING ABLE TO ATTEND MOST OF 82 00:03:19,432 --> 00:03:21,601 YESTERDAY'S SESSIONS AND WITH 83 00:03:21,668 --> 00:03:23,269 YOU ALL HEARD A FANTASTIC PANEL 84 00:03:23,336 --> 00:03:30,577 OF EXPERTS WHO OFTEN OVERVIEWED 85 00:03:30,643 --> 00:03:32,378 THE EPIDEMIOLOGY OF CHILDREN 86 00:03:32,445 --> 00:03:37,317 LIVING WITH ILLNESS AND 87 00:03:37,383 --> 00:03:39,185 RESOURCES AND METHODOLOGICAL 88 00:03:39,252 --> 00:03:40,787 APPROACHES AND EXPERTS 89 00:03:40,853 --> 00:03:42,221 CHALLENGED TO US THINK OF THE 90 00:03:42,288 --> 00:03:43,623 ILLNESS ON SOCIETY AND TO 91 00:03:43,690 --> 00:03:45,491 CONSIDER THE NEEDS OF OUR MOST 92 00:03:45,558 --> 00:03:48,628 VULNERABLE POPULATION, CHILDREN, 93 00:03:48,695 --> 00:03:50,330 AS MEDICAL COMPLEXITY AND 94 00:03:50,396 --> 00:03:51,130 NEONATES AND CRITICALLY ILL 95 00:03:51,197 --> 00:03:51,397 CHILDREN. 96 00:03:51,464 --> 00:03:53,166 I LOOK FORWARD TO EXPLORING WITH 97 00:03:53,232 --> 00:03:55,535 YOU AND THE SPEAKERS THE IMPACT 98 00:03:55,602 --> 00:03:58,738 OF PEDIATRIC SERIOUS ILLNESS ON 99 00:03:58,805 --> 00:04:04,177 THE HEALTH AND WELL BEING OF 100 00:04:04,243 --> 00:04:06,746 CHILDREN AND END WITH THE 101 00:04:06,813 --> 00:04:09,983 IMPORTANT JUGS ABOUT THE 102 00:04:10,049 --> 00:04:12,719 WORKFORCE NEEDS TO AND BUILDING 103 00:04:12,785 --> 00:04:14,087 ON YESTERDAY'S DISCUSSION I WANT 104 00:04:14,153 --> 00:04:16,122 TO HIGHLIGHT THINGS GOING ON AT 105 00:04:16,189 --> 00:04:16,322 NICHD. 106 00:04:16,389 --> 00:04:18,958 ONE THING IS OUR NEW VISION OUR 107 00:04:19,025 --> 00:04:21,828 OUR CRITICAL RESEARCH NETWORK. 108 00:04:21,894 --> 00:04:23,997 WE'RE LOOKING AT OUR NETWORK AS 109 00:04:24,063 --> 00:04:26,099 NOT INDIVIDUAL ENTITIES BUT A 110 00:04:26,165 --> 00:04:27,934 COLLECTIVE RESOURCE NOW OPEN TO 111 00:04:28,001 --> 00:04:30,803 INVESTIGATORS NOT PART OF THE 112 00:04:30,870 --> 00:04:31,204 NETWORK. 113 00:04:31,270 --> 00:04:32,905 I WANT TO SPECIFICALLY WITH 114 00:04:32,972 --> 00:04:39,612 RESPECT TO PALLIATIVE CARE, 115 00:04:39,679 --> 00:04:44,784 PEDIATRIC AND HIGHLIGHT THE 116 00:04:44,851 --> 00:04:47,687 COLLABORATIVE CRITICAL CARE 117 00:04:47,754 --> 00:04:51,891 NETWORK, THE NEO-TANATAL NETWOR 118 00:04:51,958 --> 00:05:02,502 AND THE BPCA NETWORK AND PARTLY 119 00:05:02,935 --> 00:05:04,771 LED BY OTHERS WE'RE ROLLING OUT 120 00:05:04,837 --> 00:05:07,807 A NEW PEDIATRIC PAIN NETWORK THE 121 00:05:07,874 --> 00:05:09,909 PAIN CRITICAL TRIALS PROGRAM 122 00:05:09,976 --> 00:05:11,878 UNDER THE HEAL PROGRAM WHICH IS 123 00:05:11,944 --> 00:05:14,514 HELPING END ADDICTION LONG TERM. 124 00:05:14,580 --> 00:05:15,882 SO WE WANT TO EMPHASIZE AS YOU 125 00:05:15,948 --> 00:05:18,718 THINK ABOUT RESEARCH GAPS AND 126 00:05:18,785 --> 00:05:20,787 OPPORTUNITIES THE KEY IS TO LOOK 127 00:05:20,853 --> 00:05:22,789 AT EFFORTS AND THE RESOURCES 128 00:05:22,855 --> 00:05:24,757 OPEN TO OUTSIDE INVESTIGATORS. 129 00:05:24,824 --> 00:05:26,192 FINAL THING I WANT TO HIGHLIGHT 130 00:05:26,259 --> 00:05:28,428 IS WE'RE ABOUT TO REFRESH OUR 131 00:05:28,494 --> 00:05:30,229 STRATEGIC PLAN THAT WILL LAUNCH 132 00:05:30,296 --> 00:05:32,165 IN 2025. 133 00:05:32,231 --> 00:05:33,633 AND I DO EXPECT OPPORTUNITIES IN 134 00:05:33,700 --> 00:05:37,303 THE COMING MONTHS FOR THE 135 00:05:37,370 --> 00:05:43,009 PEDIATRIC PALLIATIVE CARE XOUPT 136 00:05:43,076 --> 00:05:43,643 AND I URGE YOU TO LOOK FOR THE 137 00:05:43,710 --> 00:05:47,580 OPPORTUNITIES. 138 00:05:47,647 --> 00:05:50,850 AND ON A PERSONAL NOTE I STARTED 139 00:05:50,917 --> 00:05:52,952 MY INTERNSHIP NOW 30 YEARS AGO 140 00:05:53,019 --> 00:05:56,689 AND IN MY FIELD OF PERINATAL AND 141 00:05:56,756 --> 00:05:58,658 HIV, 30 YEARS AGO WE HAD 142 00:05:58,725 --> 00:06:00,827 TREMENDOUS NEEDS FOR PALLIATIVE 143 00:06:00,893 --> 00:06:01,594 CARE. 144 00:06:01,661 --> 00:06:04,130 I ALSO ON A PERSONAL NOTE WANT 145 00:06:04,197 --> 00:06:09,769 TO NOTE AS AN INTERN A CHIEF 146 00:06:09,836 --> 00:06:15,341 RESIDENT WAS JOANNE WOLF AND I 147 00:06:15,408 --> 00:06:23,049 WORKED CLOSELY IN 2000 ON 148 00:06:23,116 --> 00:06:24,550 TREMENDOUS NEED FOR THE 149 00:06:24,617 --> 00:06:26,219 PALLIATIVE CARE IN THE FIELD OF 150 00:06:26,285 --> 00:06:26,786 HIV. 151 00:06:26,853 --> 00:06:29,555 ALSO, REFLECTING AFTER 152 00:06:29,622 --> 00:06:30,289 YESTERDAY'S COMMENTS AND 153 00:06:30,356 --> 00:06:32,792 DISCUSSION I ALSO REFLECTED ON 154 00:06:32,859 --> 00:06:34,794 WHAT A TRANSFORMATION THERE'S 155 00:06:34,861 --> 00:06:37,730 BEEN IN PERINATAL AND HIV OVER 156 00:06:37,797 --> 00:06:40,099 THE LAST YEAR WHERE WE'VE 157 00:06:40,166 --> 00:06:42,502 PRACTICALLY ELIMINATED NEW 158 00:06:42,568 --> 00:06:44,904 INFECTIONS IN INFANTS AND 159 00:06:44,971 --> 00:06:45,872 ADVISED CHILDREN WITH HIV TO 160 00:06:45,938 --> 00:06:48,007 EXPECT TO LIVE A NORMAL LIFE 161 00:06:48,074 --> 00:06:48,608 SPAN. 162 00:06:48,674 --> 00:06:50,810 WHAT I HEARD YESTERDAY WAS VERY 163 00:06:50,877 --> 00:06:54,447 INSPIRING ASPIRATIONS FOR A 164 00:06:54,514 --> 00:06:56,582 SIMILAR TRANSFORMATION IN 165 00:06:56,649 --> 00:06:58,084 PALLIATIVE CARE SCIENCE ACHIEVED 166 00:06:58,151 --> 00:06:59,051 THROUGH BROAD BASED RESEARCH 167 00:06:59,118 --> 00:07:03,956 EFFORTS AND COLLABORATION THAT 168 00:07:04,023 --> 00:07:06,726 FULLY ENGAGE PARTNERS WITH 169 00:07:06,793 --> 00:07:07,760 PATIENTS AND FAMILIES AND HAVE 170 00:07:07,827 --> 00:07:09,162 MOST TO GAIN FROM THESE EFFORTS. 171 00:07:09,228 --> 00:07:14,567 I LOOK FORWARD TO A SECOND 172 00:07:14,634 --> 00:07:15,168 REALLY TREMENDOUS DAY NOR 173 00:07:15,234 --> 00:07:18,805 CONFERENCE AND I'LL TURN IT OVER 174 00:07:18,871 --> 00:07:25,044 TO DR. MAHONE. 175 00:07:25,111 --> 00:07:26,979 >> THANK YOU SO MUCH, ROHAN. 176 00:07:27,046 --> 00:07:29,482 IT'S INSPIRING TO HEAR ALL THE 177 00:07:29,549 --> 00:07:30,883 EXCITING THINGS WE HAVE ONLINE 178 00:07:30,950 --> 00:07:41,127 AT NICHD. 179 00:07:47,366 --> 00:07:48,701 I ATTEND THE SESSIONS YESTERDAY 180 00:07:48,768 --> 00:07:53,773 AND THEY WERE SO INSPIRING AND 181 00:07:53,840 --> 00:07:55,174 WE'LL FOCUS ON CHALLENGE TO THE 182 00:07:55,241 --> 00:07:56,008 RESEARCH FIELD AND HAVE AN 183 00:07:56,075 --> 00:07:56,909 EXCITING MODERATED DISCUSSION 184 00:07:56,976 --> 00:07:59,512 AND TO DO THAT WE HAVE ASSEMBLED 185 00:07:59,579 --> 00:08:01,814 AN EXCITING PANEL OF SCHOLARS 186 00:08:01,881 --> 00:08:03,449 AND LEADERS IN THE FIELD TO 187 00:08:03,516 --> 00:08:11,257 DISCUSS THIS IMPORTANT TOPIC. 188 00:08:11,324 --> 00:08:21,868 DR. AJAYI AND DR. DECOURCEY AND 189 00:08:26,205 --> 00:08:32,278 DR. KAYE AND DR. PAMELA HINDS 190 00:08:32,345 --> 00:08:33,946 WILL JOIN US IN AN EXCITING 191 00:08:34,013 --> 00:08:34,247 DISCUSSION. 192 00:08:34,313 --> 00:08:36,415 I INVITE YOU TO TURN YOUR 193 00:08:36,482 --> 00:08:39,685 CAMERAS ON AND I'LL FIRST START 194 00:08:39,752 --> 00:08:41,454 OFF WITH A ROUND ROBIN AND HAVE 195 00:08:41,520 --> 00:08:43,489 YOU EACH INTRODUCE YOURSELF AND 196 00:08:43,556 --> 00:08:45,024 BRIEFLY FOR ABOUT TWO MINUTES 197 00:08:45,091 --> 00:08:49,896 TALK ABOUT YOUR ORGANIZATION AND 198 00:08:49,962 --> 00:08:51,163 THEN I WILL PROCEED WITH 199 00:08:51,230 --> 00:08:51,530 QUESTIONS. 200 00:08:51,597 --> 00:08:52,999 IN THE END WE'LL HAVE TIME TO 201 00:08:53,065 --> 00:08:55,067 ENGAGE IN A COLLECTIVE EXCHANGE 202 00:08:55,134 --> 00:08:56,602 AND TAKE QUESTIONS FROM THE 203 00:08:56,669 --> 00:08:56,869 AUDIENCE. 204 00:08:56,936 --> 00:09:03,409 SO FIRST, LET'S START WITH LASE 205 00:09:03,476 --> 00:09:05,845 AND SAY A FEW WORDS AND FOLLOWED 206 00:09:05,912 --> 00:09:13,753 BY DANIELLE AND ERIK ERICA AND 207 00:09:13,819 --> 00:09:14,854 PAMELA. 208 00:09:14,921 --> 00:09:18,758 >> I'M DR. LASE AJAYI. 209 00:09:18,824 --> 00:09:22,128 I GO BY LASE. 210 00:09:22,194 --> 00:09:24,997 I'M FROM UNIVERSITY OF 211 00:09:25,064 --> 00:09:27,099 CALIFORNIA SAN DIEGO AND USDA I 212 00:09:27,166 --> 00:09:29,635 SERVE AS THE FELLOWSHIP DIRECTOR 213 00:09:29,702 --> 00:09:34,073 FOR THE PALLIATIVE MEDICINE 214 00:09:34,140 --> 00:09:37,109 PROGRAM AND A PHYSICIAN ADULT 215 00:09:37,176 --> 00:09:42,581 PALLIATIVE CARE AT UCSD AND 216 00:09:42,648 --> 00:09:45,384 PEDIATRICIAN AND IT'S FANTASTIC 217 00:09:45,451 --> 00:09:46,118 TO BE THERE. 218 00:09:46,185 --> 00:09:49,355 I WAS A RESEARCHER FOCUSSING ON 219 00:09:49,422 --> 00:09:51,590 HEALTH DISPARITIES AND 220 00:09:51,657 --> 00:09:53,159 PALLIATIVE MEDICINE RESEARCH AND 221 00:09:53,225 --> 00:09:55,561 RECENTLY MOVED BY ACADEMIC AND 222 00:09:55,628 --> 00:09:59,198 CLINICAL TIME TO UCSD. 223 00:09:59,265 --> 00:10:03,502 MY RESEARCH FOCUS IS ON HEALTH 224 00:10:03,569 --> 00:10:04,503 DISPARITIES AND MATERNAL FIELD 225 00:10:04,570 --> 00:10:05,438 HEALTH DISPARITIES. 226 00:10:05,504 --> 00:10:07,173 WE'LL TALK ABOUT THAT WHEN WE 227 00:10:07,239 --> 00:10:10,109 TALK ABOUT THE ROUND ROBIN. 228 00:10:10,176 --> 00:10:13,813 I HAVE FOCUS ON PAIN AND MY 229 00:10:13,879 --> 00:10:16,015 FOCUS ON THE INTERSECTION OF 230 00:10:16,082 --> 00:10:18,451 SERIOUS ILLNESSES AND MATERNAL 231 00:10:18,517 --> 00:10:21,187 HEALTH DISPARITIES AND USING 232 00:10:21,253 --> 00:10:23,489 TECHNOLOGIES TO GAP THE HEALTH 233 00:10:23,556 --> 00:10:26,092 ACCESS AND HOW WE HEAR THE 234 00:10:26,158 --> 00:10:27,660 VOICES OF OUR PATIENTS. 235 00:10:27,727 --> 00:10:29,462 I THINK IT'S IMPORTANT WHEN WE 236 00:10:29,528 --> 00:10:31,864 THINK ABOUT PALLIATIVE MEDICINE 237 00:10:31,931 --> 00:10:35,267 AND HEALTH DISPARITIES I REALIZE 238 00:10:35,334 --> 00:10:38,404 IN MY WORK AS A PEDIATRIC 239 00:10:38,471 --> 00:10:39,105 PALLIATIVE CARE PHYSICIAN WHEN I 240 00:10:39,171 --> 00:10:44,210 WAS HEARING THE STORIES OF MY 241 00:10:44,276 --> 00:10:46,112 BLACK AND INDIGENOUS MOMS WHEN 242 00:10:46,178 --> 00:10:50,783 THEY WENT THROUGH AND LOOK AT 243 00:10:50,850 --> 00:10:53,619 BLACK MATERNAL MORTALITY AND 244 00:10:53,686 --> 00:10:55,021 MORBIDITY AND THE PATIENT WE 245 00:10:55,087 --> 00:10:57,156 DON'T SEE IN MEDICINE THAT 246 00:10:57,223 --> 00:10:58,324 SPEARHEADED MY CLINICAL RESEARCH 247 00:10:58,391 --> 00:10:59,658 IN A DIFFERENT DIRECTION. 248 00:10:59,725 --> 00:11:01,827 IT WAS INTERESTING TO SEE HOW IT 249 00:11:01,894 --> 00:11:04,563 ALL TIES TOGETHER IN THE WORK I 250 00:11:04,630 --> 00:11:05,464 DO EVERYDAY. 251 00:11:05,531 --> 00:11:07,033 IT'S A SMALL INTRO. 252 00:11:07,099 --> 00:11:08,300 NOT TWO MINUTES BUT ENOUGH FOR 253 00:11:08,367 --> 00:11:10,102 NOW. 254 00:11:10,169 --> 00:11:19,145 >> THANK YOU. 255 00:11:19,211 --> 00:11:23,482 >> I'M AN INTENSIVIST AND 256 00:11:23,549 --> 00:11:25,618 PALLIATIVE CARE RESEARCHER IN 257 00:11:25,684 --> 00:11:26,719 CHILDREN'S HOSPITAL AND LOOK AT 258 00:11:26,786 --> 00:11:27,620 SERIOUS ILLNESS COMMUNICATION 259 00:11:27,686 --> 00:11:29,155 AND ADVANCED CARE PLANNING FOR 260 00:11:29,221 --> 00:11:31,257 CHILDREN WITH MEDICAL COMPLEXITY 261 00:11:31,323 --> 00:11:37,496 AND CHRONIC CRITICAL ILLNESS. 262 00:11:37,563 --> 00:11:43,135 I THINK LIKE YOU IS I WAS STRUCK 263 00:11:43,202 --> 00:11:47,039 BY THE RESULTS AND OUTCOME OF 264 00:11:47,106 --> 00:11:49,308 OUR LACK OF COMMUNICATION IN ICU 265 00:11:49,375 --> 00:11:51,077 AS AN ATTENDING AND SEEMED THERE 266 00:11:51,143 --> 00:11:52,344 MUST BE BETTER WAYS TO DO THIS 267 00:11:52,411 --> 00:11:54,413 BECAUSE WE GET TO KNOW MANY 268 00:11:54,480 --> 00:11:59,485 PATIENTS AND THEIR FAMILIES OVER 269 00:11:59,552 --> 00:12:03,622 LONG PERIOD OF TIME I THINK 270 00:12:03,689 --> 00:12:05,191 THERE'S SO MANY WAYS IN WHICH WE 271 00:12:05,257 --> 00:12:06,959 CAN MOVE THE FIELD FORWARD. 272 00:12:07,026 --> 00:12:08,794 I ALSO SERVE OVER THE LAST TWO 273 00:12:08,861 --> 00:12:11,030 YEAR AS THE CHAIR OF THE SOCIETY 274 00:12:11,097 --> 00:12:15,301 FOR CRITICAL CARE MEDICINE 275 00:12:15,367 --> 00:12:16,168 PEDIATRIC PALLIATIVE CARE 276 00:12:16,235 --> 00:12:18,737 INTEREST GROUP WHICH HAS BEEN 277 00:12:18,804 --> 00:12:20,940 REWARDING AND INTERESTING IN 278 00:12:21,006 --> 00:12:21,941 THAT OUR MEMBERS ARE BOTH 279 00:12:22,007 --> 00:12:26,779 CLINICIANS AND SCIENTISTS FROM 280 00:12:26,846 --> 00:12:29,348 BOTH ACADEMIC TEACHING HOSPITAL 281 00:12:29,415 --> 00:12:32,685 AND IT'S BEEN INTERESTING TO 282 00:12:32,751 --> 00:12:33,486 HEAR ABOUT AND UNDERSTAND 283 00:12:33,552 --> 00:12:35,921 DIFFERENT NEEDS ACROSS SETTINGS. 284 00:12:35,988 --> 00:12:42,194 THANK YOU. 285 00:12:44,697 --> 00:12:47,867 >> FRIENDLY GREETINGS TO YOU 286 00:12:47,933 --> 00:12:49,068 FROM CHILDREN'S NATIONAL 287 00:12:49,135 --> 00:12:49,835 HOSPITAL IN WASHINGTON, D.C. AND 288 00:12:49,902 --> 00:12:52,104 THE SCHOOL OF MEDICINE AND 289 00:12:52,171 --> 00:12:53,272 HEALTH SCIENCES AT G.W. 290 00:12:53,339 --> 00:12:56,675 I WANT TO REALLY GIVE THANKS TO 291 00:12:56,742 --> 00:13:07,119 DR. OCTOBER AND THERE MAHOMES 292 00:13:07,186 --> 00:13:09,355 AND PLEASED TO SEE THE 293 00:13:09,421 --> 00:13:11,824 LEADERSHIP GIVEN TO PEDIATRIC 294 00:13:11,891 --> 00:13:12,358 PALLIATIVE CARE ACROSS 295 00:13:12,424 --> 00:13:12,625 INSTITUTE. 296 00:13:12,691 --> 00:13:13,425 I WANT TO THANK YOU. 297 00:13:13,492 --> 00:13:16,128 I'M A NURSE SCIENTIST IN 298 00:13:16,195 --> 00:13:17,730 PEDIATRICS AND PALLIATIVE CARE 299 00:13:17,796 --> 00:13:20,399 WITH A STRONG BACKGROUND IN 300 00:13:20,466 --> 00:13:21,133 PEDIATRIC ONCOLOGY AS WELL WITH 301 00:13:21,200 --> 00:13:24,737 A UNIQUE FOCUS, I GUESS, ON 302 00:13:24,803 --> 00:13:26,238 MEASUREMENT AND PATIENT-REPORTED 303 00:13:26,305 --> 00:13:29,108 OUTCOMES HAVING DRIVEN A LARGE 304 00:13:29,175 --> 00:13:31,277 PART OF MY CAREER AND AT THE 305 00:13:31,343 --> 00:13:34,146 REQUEST OF MY PEDIATRIC PATIENTS 306 00:13:34,213 --> 00:13:38,951 THEN SHIFTING FOCUS TO INCLUDE 307 00:13:39,018 --> 00:13:40,719 FAMILIES AND A NURSE SHIFTING TO 308 00:13:40,786 --> 00:13:41,720 INCLUDE FAMILIES BUT IN TRUTH I 309 00:13:41,787 --> 00:13:45,124 WAS SO FOCUSSED ON THE CHILD 310 00:13:45,191 --> 00:13:46,125 VOICE IT WASN'T UNTIL CHILDREN 311 00:13:46,192 --> 00:13:48,627 SAID TO ME I'M WORRIED ABOUT MY 312 00:13:48,694 --> 00:13:50,462 PARENTS. 313 00:13:50,529 --> 00:13:51,030 I LIKE YOUR STUDIES. 314 00:13:51,096 --> 00:13:53,899 PLEASE WOULD YOU INCLUDE THEM. 315 00:13:53,966 --> 00:13:56,101 I THEN BROADENED MY PERSPECTIVE 316 00:13:56,168 --> 00:13:58,204 AND GRATEFUL TO THE CHILDREN AND 317 00:13:58,270 --> 00:14:00,272 PARENTS WHO TAUGHT ME ABOUT A 318 00:14:00,339 --> 00:14:02,208 CONCEPT THEY LABELLED BEING A 319 00:14:02,274 --> 00:14:03,909 GOOD PARENT TO MY VERY ILL 320 00:14:03,976 --> 00:14:04,176 CHILD. 321 00:14:04,243 --> 00:14:07,346 AND THAT WORK WE CONTINUE HERE 322 00:14:07,413 --> 00:14:11,383 AT CHILDREN'S NATIONAL. 323 00:14:11,450 --> 00:14:14,853 THANK YOU, DR. MAHOMES. 324 00:14:14,920 --> 00:14:16,121 >> ERICA. 325 00:14:16,188 --> 00:14:17,656 >> HI, EVERYONE. 326 00:14:17,723 --> 00:14:19,124 I'M GLAD TO BE HERE. 327 00:14:19,191 --> 00:14:21,827 I'M ERICA KAYE AND DIRECT OUR 328 00:14:21,894 --> 00:14:24,863 QUALITY OF LIFE AND PALLIATIVE 329 00:14:24,930 --> 00:14:25,898 CARE RESEARCH DIVISION AT 330 00:14:25,965 --> 00:14:27,132 ST. JUDE IN MEMPHIS AND GRATEFUL 331 00:14:27,199 --> 00:14:30,970 TO BE HERE AND HELPING TO 332 00:14:31,036 --> 00:14:34,206 REPRESENT THE AMERICAN ACADEMY 333 00:14:34,273 --> 00:14:36,742 OF HOSPICE AND PALLIATIVE 334 00:14:36,809 --> 00:14:41,180 MEDICINE WITH A FOCUS ON WHAT 335 00:14:41,247 --> 00:14:43,582 WE'RE DOING TO SUPPORT EFFORT 336 00:14:43,649 --> 00:14:45,351 AND GROWTH AND ECHOING WHAT 337 00:14:45,417 --> 00:14:47,019 EVERYONE SAID AND THANKING 338 00:14:47,086 --> 00:14:50,789 TESSIE AND EVERYBODY FOR 339 00:14:50,856 --> 00:14:51,257 ORGANIZING THIS EVENT. 340 00:14:51,323 --> 00:14:52,758 >> THANK YOU, ALL GOOD-BYE FOR 341 00:14:52,825 --> 00:14:54,059 JOINING US. 342 00:14:54,126 --> 00:14:57,363 THIS IS GOING TO BE A WONDERFUL 343 00:14:57,429 --> 00:14:57,863 INTERACTIVE DISCUSSION. 344 00:14:57,930 --> 00:14:59,698 I'LL START WITH QUESTIONS AND 345 00:14:59,765 --> 00:15:06,272 WE'LL LEAVE TIME FOR YOU TO ASK 346 00:15:06,338 --> 00:15:07,539 EACH OTHER QUESTIONS. 347 00:15:07,606 --> 00:15:10,209 LASE, WE'LL START WITH YOU. 348 00:15:10,276 --> 00:15:11,710 WE KNOW YOU'RE INTERESTED IN THE 349 00:15:11,777 --> 00:15:13,178 PALLIATIVE CARE NEEDS OF 350 00:15:13,245 --> 00:15:15,781 CHILDREN LIVING TO ADULTHOOD 351 00:15:15,848 --> 00:15:17,716 WITH SERIOUS ILLNESS AND HAVE 352 00:15:17,783 --> 00:15:18,784 INTEREST IN HEALTH EQUITY WORK 353 00:15:18,851 --> 00:15:19,618 AS WELL. 354 00:15:19,685 --> 00:15:21,253 MY QUESTION IS THAT ADVANCES IN 355 00:15:21,320 --> 00:15:24,857 MEDICINE HAVE REDUCED THE 356 00:15:24,923 --> 00:15:27,293 MORTALITY IN PEDIATRICS YET 357 00:15:27,359 --> 00:15:29,561 MORBIDITIES PERSIST WITH 358 00:15:29,628 --> 00:15:31,597 INCREASING OF POPULATIONS OF 359 00:15:31,664 --> 00:15:33,032 CHILDREN LIVING INTO ADULTHOOD 360 00:15:33,098 --> 00:15:33,999 WITH SERIOUS ILLNESS. 361 00:15:34,066 --> 00:15:35,100 WHAT'S YOUR ROLE IN CARING FOR 362 00:15:35,167 --> 00:15:37,469 THE CHILDREN'S AND WHAT ARE THE 363 00:15:37,536 --> 00:15:38,871 BIGGEST GAPS IN OUR KNOWLEDGE AS 364 00:15:38,937 --> 00:15:44,543 THE CHILDREN TRANSITION INTO 365 00:15:44,610 --> 00:15:46,612 ADULTHOOD AND IT'S ONE OF THE 366 00:15:46,679 --> 00:15:47,680 NICHD STRATEGIC THEMES IN OUR 367 00:15:47,746 --> 00:15:48,614 STRATEGIC PLAN. 368 00:15:48,681 --> 00:15:50,783 WE'RE INTERESTED IN LEARNING 369 00:15:50,849 --> 00:15:57,089 MORE ABOUT THAT. 370 00:15:57,156 --> 00:15:58,390 >> I LOVE THAT QUESTION BECAUSE 371 00:15:58,457 --> 00:16:03,028 WHAT BROUGHT ME TO PALLIATIVE 372 00:16:03,095 --> 00:16:10,402 MEDICINE WAS KIDS WITH SICKLE 373 00:16:10,469 --> 00:16:12,004 CELL DISEASE AND YOU SEE THEM 374 00:16:12,071 --> 00:16:14,640 HAVE THE TRANSITION POINTS AND 375 00:16:14,707 --> 00:16:18,277 IT'S FROM PED TO ADULTS WE SEE 376 00:16:18,344 --> 00:16:20,346 THE HIGHEST MORBIDITY AND 377 00:16:20,412 --> 00:16:22,781 MORTALITY AND WE LOSE THEM IN 378 00:16:22,848 --> 00:16:25,351 THE HOSPITAL AND ALSO TRUE FOR 379 00:16:25,417 --> 00:16:27,386 OUR CANCER SURVIVORS AND 380 00:16:27,453 --> 00:16:31,090 PATIENTS WITH CFS WHERE I CUT MY 381 00:16:31,156 --> 00:16:32,658 TEETH IN RESEARCH WHEN I LOOK AT 382 00:16:32,725 --> 00:16:34,126 THAT AND IT'S WHERE WE MISSED 383 00:16:34,193 --> 00:16:36,462 THE OPPORTUNITY AS WE HAVE THIS 384 00:16:36,528 --> 00:16:37,730 TRANSITION WE TAKE EITHER REALLY 385 00:16:37,796 --> 00:16:39,965 GOOD CARE OF THEM IN KIDS AND 386 00:16:40,032 --> 00:16:41,533 THEN AS THEY TRANSITION TO 387 00:16:41,600 --> 00:16:42,801 ADULTHOOD WE DON'T KNOW HOW TO 388 00:16:42,868 --> 00:16:45,471 TAKE CARE OF THEM. 389 00:16:45,537 --> 00:16:54,246 THEY LOSE THE WRAP AROUND AND 390 00:16:54,313 --> 00:16:56,248 WE'RE NOT -- THERE'S A GAP IN 391 00:16:56,315 --> 00:16:58,117 HOW WE TRANSITION BACK HERE TO 392 00:16:58,183 --> 00:17:02,421 THEM AND IT'S REALLY HARD 393 00:17:02,488 --> 00:17:04,456 BECAUSE IN THAT PERIOD WE KNOW 394 00:17:04,523 --> 00:17:06,525 THESE KIDS AND YOUNG ADULTS ALSO 395 00:17:06,592 --> 00:17:09,528 HAVE THE SENSE OF INVINCIBILITY 396 00:17:09,595 --> 00:17:10,996 WHERE THEY'RE NOT AS COMPLIANT 397 00:17:11,063 --> 00:17:13,766 WITH THEIR MEDICATIONS AND 398 00:17:13,832 --> 00:17:15,100 TRANSITION FROM THE SUPPORT AND 399 00:17:15,167 --> 00:17:16,602 CARE TEAM THAT HELPS THEM BE 400 00:17:16,668 --> 00:17:19,905 CONSISTENT WITH THE TREATMENT 401 00:17:19,972 --> 00:17:21,940 PLANS THEY NEED TO LIVE LONGER 402 00:17:22,007 --> 00:17:27,679 AND BETTER AND WE AS A MEDICAL 403 00:17:27,746 --> 00:17:32,618 SYSTEM CAN'T TRANSITION THEM TO 404 00:17:32,684 --> 00:17:34,720 ADULTS AND WE'RE IN PALLIATIVE 405 00:17:34,787 --> 00:17:35,754 MEDICINE WE'RE POSITIONED TO 406 00:17:35,821 --> 00:17:37,790 HAVE THE SUPPORTIVE CARE THEY 407 00:17:37,856 --> 00:17:39,024 NEED FROM A PSYCHOSOCIAL AND 408 00:17:39,091 --> 00:17:40,392 SYMPTOM MANAGEMENT AND LOOK AT 409 00:17:40,459 --> 00:17:43,529 THAT APPROACH AND WHOLE PERSON 410 00:17:43,595 --> 00:17:44,696 APPROACH WE IN PALLIATIVE 411 00:17:44,763 --> 00:17:45,898 MEDICINE DO SO WELL. 412 00:17:45,964 --> 00:17:52,104 WE SOMEWHERE THIS GAP IN CARE. 413 00:17:52,171 --> 00:17:53,372 I HIGHLIGHT THOSE DISEASES 414 00:17:53,439 --> 00:17:56,308 BECAUSE THOSE MARGINALIZATION 415 00:17:56,375 --> 00:17:57,976 WITH SICKLE CELL DISEASE AND 416 00:17:58,043 --> 00:18:02,247 IT'S GREAT THEY APPROVED TWO NEW 417 00:18:02,314 --> 00:18:03,015 MEDICINES BUT YOU LOOK AT HOW 418 00:18:03,081 --> 00:18:04,950 MUCH IT'S GOING TO COST AND HOW 419 00:18:05,017 --> 00:18:05,951 ACCESSIBLE IT'S GOING TO BE 420 00:18:06,018 --> 00:18:07,519 THERE'S A HUGE GAP THERE. 421 00:18:07,586 --> 00:18:08,754 THERE'S A ROLE FOR TO US PLAY 422 00:18:08,821 --> 00:18:14,860 AND WHEN WE LOOK AT THE PATIENT 423 00:18:14,927 --> 00:18:17,262 POPULATION AND WHO IN PALLIATIVE 424 00:18:17,329 --> 00:18:18,730 MEDICINE ARE WE REACHING AND 425 00:18:18,797 --> 00:18:20,432 LOOKING AT THOSE WITH THE 426 00:18:20,499 --> 00:18:21,767 HIGHEST MORBIDITIES IN THE 427 00:18:21,834 --> 00:18:23,335 POPULATION AND LOOK AT THE 428 00:18:23,402 --> 00:18:26,138 DEMOGRAPHICS AND WHO THEY'RE 429 00:18:26,205 --> 00:18:27,539 REACHING AND PALLIATIVE 430 00:18:27,606 --> 00:18:28,974 MEDICINE, WHO ARE WE REACHING 431 00:18:29,041 --> 00:18:30,809 AND PROVIDING OUR SERVICES TO 432 00:18:30,876 --> 00:18:32,211 AND WHY IS THAT? 433 00:18:32,277 --> 00:18:34,480 THAT'S A GAP IN KNOWLEDGE AND 434 00:18:34,546 --> 00:18:36,215 WAY WE CAN STRENGTHEN THAT AND 435 00:18:36,281 --> 00:18:38,784 HOW DO WE MAKE OURSELVES MORE 436 00:18:38,851 --> 00:18:39,084 ACCESSIBLE. 437 00:18:39,151 --> 00:18:40,118 WHAT IS THAT FEAR? 438 00:18:40,185 --> 00:18:42,788 I THINK THOSE ARE GAPS AND 439 00:18:42,855 --> 00:18:45,390 RESEARCH IN CARE WE CAN BEGIN TO 440 00:18:45,457 --> 00:18:48,760 ADD MORE TO. 441 00:18:48,827 --> 00:18:51,463 >> THAT'S A REALLY IMPORTANT 442 00:18:51,530 --> 00:18:56,869 RESEARCH QUESTION, WHO ARE WE 443 00:18:56,935 --> 00:18:59,705 REACHING AND THE POPULATION OF 444 00:18:59,771 --> 00:19:04,276 WHAT SOME OF THE CHALLENGES ARE 445 00:19:04,343 --> 00:19:06,778 IN THAT REGARD. 446 00:19:06,845 --> 00:19:12,718 THANK YOU FOR THAT I WANT TO 447 00:19:12,784 --> 00:19:16,855 FOLLOW THAT QUESTION UP WITH 448 00:19:16,922 --> 00:19:17,823 TALKING ABOUT PREGNANT PEOPLE 449 00:19:17,890 --> 00:19:19,424 WITH SERIOUS ILLNESS AND PIGGY 450 00:19:19,491 --> 00:19:24,463 BACKING ON YOUR POINT ABOUT WHO 451 00:19:24,530 --> 00:19:25,097 WE'RE REACHING. 452 00:19:25,163 --> 00:19:26,665 WHAT ARE THE BIGGEST CHALLENGE 453 00:19:26,732 --> 00:19:34,039 US MIGHT SEE FOR PREGNANT WOMEN 454 00:19:34,106 --> 00:19:36,575 AND THE IMPACT OF THEIR HEALTH 455 00:19:36,642 --> 00:19:38,777 AND THE HEALTH OF THEIR CHILD? 456 00:19:38,844 --> 00:19:47,119 >> THERE'S A CLEAR LACK OF DATA. 457 00:19:47,185 --> 00:19:57,696 WE DIDN'T WANT TO THINK ABOUT 458 00:20:08,273 --> 00:20:09,508 COVID-19 AND THEY WEREN'T 459 00:20:09,575 --> 00:20:10,709 INCLUDED IN THE CLINICAL TRIALS 460 00:20:10,776 --> 00:20:11,710 FOR THE VACCINE. 461 00:20:11,777 --> 00:20:14,012 WHAT IS SAFE AND NOT SAFE NOW 462 00:20:14,079 --> 00:20:15,614 AND WHEN WE EXCLUDE PEOPLE FROM 463 00:20:15,681 --> 00:20:17,049 CLINICAL TRIALS AND RESEARCH 464 00:20:17,115 --> 00:20:18,650 THEN YOU DON'T HAVE INFORMATION 465 00:20:18,717 --> 00:20:21,286 AND THIS IS TALKED ABOUT 466 00:20:21,353 --> 00:20:23,755 YESTERDAY I THINK AND IT'S HOW 467 00:20:23,822 --> 00:20:28,961 DO WE MAKE OURSELVES REACH THAT 468 00:20:29,027 --> 00:20:30,963 POPULATION AND CONDUCT THE 469 00:20:31,029 --> 00:20:32,664 QUESTIONS AND I THINK PAM DOES 470 00:20:32,731 --> 00:20:33,999 THIS WELL IN HER WORK INCLUDING 471 00:20:34,066 --> 00:20:36,635 THE VOICES AND HAVING THEM BE AT 472 00:20:36,702 --> 00:20:37,936 THE FOREFRONT IN OUR QUESTIONS 473 00:20:38,003 --> 00:20:41,306 BUT WHEN WE LOOK AT PREGNANT 474 00:20:41,373 --> 00:20:44,142 WOMEN WITH SERIOUS ILLNESS AND 475 00:20:44,209 --> 00:20:45,944 WOMEN WITH CANCER UNDERGOING 476 00:20:46,011 --> 00:20:49,815 ONCOLOGY TREATMENTS AND PREGNANT 477 00:20:49,881 --> 00:20:50,782 WHAT HAPPENS TO THEM AND THEIR 478 00:20:50,849 --> 00:20:57,856 BABY AND WHAT'S IMPORTANT TO 479 00:20:57,923 --> 00:20:58,123 THEM. 480 00:20:58,190 --> 00:21:00,759 SAME WITH WOMEN WITH SICKLE CELL 481 00:21:00,826 --> 00:21:04,096 DISEASE AND ON OPIOIDS AND THESE 482 00:21:04,162 --> 00:21:05,864 ARE QUESTIONS WE DON'T HAVE 483 00:21:05,931 --> 00:21:07,699 ANSWERS TO AND I'LL BE MORE 484 00:21:07,766 --> 00:21:09,768 PROVOCATIVE BECAUSE OF MY DRIVE 485 00:21:09,835 --> 00:21:14,306 HERE TODAY TO THE OFFICE, KATE 486 00:21:14,373 --> 00:21:16,108 COX WHO HAD TO LEAVE THE STATE 487 00:21:16,174 --> 00:21:22,514 TO GET AN ABORTION AND THE NEWS 488 00:21:22,581 --> 00:21:25,884 IS TALKING ABOUT HOW TRANSMIT 18 489 00:21:25,951 --> 00:21:27,786 IS UNIVERSELY FATAL BUT THE 490 00:21:27,853 --> 00:21:29,788 HIGHLIGHT OF WHAT I'M LISTENING 491 00:21:29,855 --> 00:21:31,423 TO AND THE NEWS ABOUT HER STORY 492 00:21:31,490 --> 00:21:32,858 SHE HAD TO LEAVE THE STATE 493 00:21:32,924 --> 00:21:36,028 BECAUSE OF MEDICAL REASONING FOR 494 00:21:36,094 --> 00:21:36,294 ABORTION. 495 00:21:36,361 --> 00:21:39,031 BUT I AS A PEDIATRIC PALLIATIVE 496 00:21:39,097 --> 00:21:41,733 CARE PHYSICIAN AND RESEARCHER I 497 00:21:41,800 --> 00:21:46,038 LOOK AT IT AS A PERSON WHO WAS 498 00:21:46,104 --> 00:21:47,873 LIKELY FACED WITH AN IMPOSSIBLE 499 00:21:47,939 --> 00:21:50,942 DECISION AND DID HE HAVE ACCESS 500 00:21:51,009 --> 00:21:52,577 TO PALLIATIVE CARE? 501 00:21:52,644 --> 00:21:57,582 WHO WAS ADVISING HER AND CARING 502 00:21:57,649 --> 00:22:00,419 FOR HER AND DID SHE EVEN FEEL 503 00:22:00,485 --> 00:22:01,486 SAFE IN ASKING. 504 00:22:01,553 --> 00:22:07,993 AND WHEN WE PUT RESTRICTIONS ON 505 00:22:08,060 --> 00:22:09,895 PREGNANT PEOPLE AND AFRAID TO 506 00:22:09,961 --> 00:22:13,198 ASK FOR THIS CARE THEY NEED AND 507 00:22:13,265 --> 00:22:14,266 A MIDDLE CLASS WHITE WOMAN WHO 508 00:22:14,332 --> 00:22:15,934 HAS THE RESOURCES TO HAVE HER 509 00:22:16,001 --> 00:22:18,770 STORY TOLD, I THINK OF HOW MANY 510 00:22:18,837 --> 00:22:20,439 MORE WHO WERE IN THIS POSITION 511 00:22:20,505 --> 00:22:22,107 AND DON'T HAVE ACCESS TO THESE 512 00:22:22,174 --> 00:22:24,576 SERVICES AND WHAT ELSE ARE WE 513 00:22:24,643 --> 00:22:24,810 MISSING? 514 00:22:24,876 --> 00:22:26,778 WHEN WE SEE THE INTRUSION OF 515 00:22:26,845 --> 00:22:28,680 GOVERNMENTS INTO THE CARE WE CAN 516 00:22:28,747 --> 00:22:31,883 PROVIDE TO OUR PATIENT, WHAT ARE 517 00:22:31,950 --> 00:22:34,086 WE MISSING AND FROM A PRACTICAL 518 00:22:34,152 --> 00:22:37,656 CARE STANDPOINT AND FROM A 519 00:22:37,723 --> 00:22:38,690 RESEARCH STANDPOINT AND WHAT WE 520 00:22:38,757 --> 00:22:42,928 CAN DO FOR OUR PATIENTS AND THE 521 00:22:42,994 --> 00:22:44,362 PATIENT-REPORTED OUTCOMES FROM 522 00:22:44,429 --> 00:22:47,265 THE MOTHER'S AND BABY'S 523 00:22:47,332 --> 00:22:48,633 STANDPOINT. 524 00:22:48,700 --> 00:22:49,968 A LOT GOES INTO THAT AND WHAT 525 00:22:50,035 --> 00:22:51,636 ALSO HURTS ME IS THE COURTS ARE 526 00:22:51,703 --> 00:22:54,439 SAYING, WELL, IT'S NOT OUR FAULT 527 00:22:54,506 --> 00:22:57,042 THAT PREGNANT PEOPLE ARE DYING. 528 00:22:57,109 --> 00:22:57,743 IT'S THE DOCTORS. 529 00:22:57,809 --> 00:23:00,879 THEY'RE MAKING THE DOCTORS THE 530 00:23:00,946 --> 00:23:10,655 SCAPEGOAT BUT OUR HANDS ARE TIED 531 00:23:10,722 --> 00:23:13,859 FOR THE CARE TEAM BECAUSE WE 532 00:23:13,925 --> 00:23:15,494 DON'T HAVE THE ABILITY TO HELP. 533 00:23:15,560 --> 00:23:20,332 IT'S A LONG ANSWER BUT COMPLEX 534 00:23:20,398 --> 00:23:20,565 ANSWER. 535 00:23:20,632 --> 00:23:25,871 >> I CAN BACK UP AND ADD WHO 536 00:23:25,937 --> 00:23:28,406 GETS CARE AND WHO PAYS FOR THE 537 00:23:28,473 --> 00:23:30,075 CARE AND WHEN DOES THE PAYMENT 538 00:23:30,142 --> 00:23:30,342 START? 539 00:23:30,408 --> 00:23:34,045 WE RECENTLY SERVED ON A NATIONAL 540 00:23:34,112 --> 00:23:35,747 ACADEMIES WORKING GROUP LOOKING 541 00:23:35,814 --> 00:23:38,784 AT WHO PAYS IN PEDIATRIC 542 00:23:38,850 --> 00:23:40,152 PALLIATIVE CARE FOR EXAMPLE 543 00:23:40,218 --> 00:23:41,920 SURVIVORS OF CHILDHOOD CANCER, 544 00:23:41,987 --> 00:23:46,158 THE PAYMENT DOES OCCUR BUT IT 545 00:23:46,224 --> 00:23:47,626 ENDS AT AGE 18. 546 00:23:47,692 --> 00:23:49,161 LOOKING AT THE DATA WE HAD 547 00:23:49,227 --> 00:23:54,466 AVAILABLE TO US TO MAKE 548 00:23:54,533 --> 00:23:59,905 RECOMMENDATIONS TO THE SOCIAL 549 00:23:59,971 --> 00:24:00,906 SECURITY AND I THINK THE 550 00:24:00,972 --> 00:24:03,441 QUESTION WE ALL HAVE TO KEEP IN 551 00:24:03,508 --> 00:24:05,577 FRONT OF US IS WHO PAYS BECAUSE 552 00:24:05,644 --> 00:24:10,816 THAT'S RELATED TO WHO GETS THE 553 00:24:10,882 --> 00:24:18,924 CARE. 554 00:24:18,990 --> 00:24:21,927 >> I'LL CONTINUE ON WITH YOU AND 555 00:24:21,993 --> 00:24:30,368 ASK YOU DOWNTOWN TO ELABORATE ON 556 00:24:30,435 --> 00:24:32,771 THE COMMENTS YOU MADE EARLIER 557 00:24:32,838 --> 00:24:34,940 ABOUT MULTI-DISCIPLINARY WORK 558 00:24:35,006 --> 00:24:43,281 AND ENSURE THE VOICES ARE HEARD 559 00:24:43,348 --> 00:24:45,450 WHAT STRATEGIES DO YOU USE TO 560 00:24:45,517 --> 00:24:47,919 DETERMINE ELIGIBILITY AND ANY 561 00:24:47,986 --> 00:24:54,025 TIPS ON ENROLLING VARIATION 562 00:24:54,092 --> 00:24:55,627 PATIENTS, CHILDREN IN STUDIES 563 00:24:55,694 --> 00:24:56,795 AND MAKING SURE THE VOICE HEARD 564 00:24:56,862 --> 00:25:00,198 IN OUR RESEARCH. 565 00:25:00,265 --> 00:25:02,767 >> SO RULE OF THUMB AND ALSO 566 00:25:02,834 --> 00:25:04,369 SUPPORTED BY OUR DATA, CHILDREN 567 00:25:04,436 --> 00:25:05,904 WHO HAVE BEEN TREATED FOR A LONG 568 00:25:05,971 --> 00:25:08,206 TIME AND OFTEN FOR A RECURRENCE 569 00:25:08,273 --> 00:25:10,609 ARE ABLE TO GIVE VOICE AT A FAR 570 00:25:10,675 --> 00:25:11,243 YOUNGER VOICE THAN CHILDREN 571 00:25:11,309 --> 00:25:11,843 BEING TREATED FOR THE FIRST 572 00:25:11,910 --> 00:25:16,448 TIME. 573 00:25:16,514 --> 00:25:18,617 SO CIRCUMSTANCES PLAY INTO ANY 574 00:25:18,683 --> 00:25:20,819 ONE ANSWER. 575 00:25:20,886 --> 00:25:22,387 WHAT WE KNOW IS CHILDREN AS 576 00:25:22,454 --> 00:25:24,322 YOUNG AS AGE 4 TREATED 577 00:25:24,389 --> 00:25:26,458 PREVIOUSLY ARE ABLE TO GIVE US 578 00:25:26,524 --> 00:25:27,759 WHAT WE CONSIDER TO BE VALID 579 00:25:27,826 --> 00:25:30,695 RESPONSES TO WHAT THEY'RE BODIES 580 00:25:30,762 --> 00:25:36,134 ARE FEELING AND WHAT THEY ARE 581 00:25:36,201 --> 00:25:37,569 WORRIED ABOUT. 582 00:25:37,636 --> 00:25:43,041 THERE ARE CLINICAL ANECDOTES OF 583 00:25:43,108 --> 00:25:44,409 CHILDREN AS YOUNG AS 3 OF 584 00:25:44,476 --> 00:25:45,310 CLAIMING THAT AND CAUTIOUS ABOUT 585 00:25:45,377 --> 00:25:45,577 THAT. 586 00:25:45,644 --> 00:25:47,412 AND CHILDREN IN OUR STUDIES OVER 587 00:25:47,479 --> 00:25:57,789 1200 IN QUALITY OF LIFE STUDIES 588 00:25:57,856 --> 00:25:59,891 ABOUT 20% STARTED OUT NOT BEING 589 00:25:59,958 --> 00:26:02,027 ABLE TO ANSWER OUR PROMPTS AT 590 00:26:02,093 --> 00:26:05,263 THE TIME OF DIAGNOSIS AND AT 591 00:26:05,330 --> 00:26:06,364 THREE MONTHS FOLLOWING THEIR 592 00:26:06,431 --> 00:26:08,967 DIAGNOSIS THEY WERE ABLE TO 593 00:26:09,034 --> 00:26:10,769 ANSWER THE PROMPTS WE WERE 594 00:26:10,835 --> 00:26:11,937 POSING TO THEM. 595 00:26:12,003 --> 00:26:12,704 WHEN WE FIRST STARTED ASKING 596 00:26:12,771 --> 00:26:14,072 THEM THEY WOULD TURN TO THEIR 597 00:26:14,139 --> 00:26:16,374 MOTHER AND SAY, MOMMY, WHAT'S MY 598 00:26:16,441 --> 00:26:19,244 ANSWER BUT AT THREE MONTHS, POST 599 00:26:19,311 --> 00:26:20,779 DIAGNOSIS THEY WERE GIVING ME 600 00:26:20,845 --> 00:26:25,550 THEIR ANSWER. 601 00:26:25,617 --> 00:26:29,654 I THINK ALWAYS WITH PEDIATRIC 602 00:26:29,721 --> 00:26:31,156 PALLIATIVE CARE AND AGE ONE 603 00:26:31,222 --> 00:26:32,090 CONSIDERATION AND SERIOUSNESS OF 604 00:26:32,157 --> 00:26:34,092 ILL, AND THE IMPACT AT THE 605 00:26:34,159 --> 00:26:37,796 MOMENT OF MEASUREMENT ABOUT 606 00:26:37,862 --> 00:26:41,199 PRESENT SYMPTOMS WE MUST EXPECT 607 00:26:41,266 --> 00:26:43,101 SOME CHILDREN WILL BE 608 00:26:43,168 --> 00:26:45,770 FORTHCOMING AND SOME CHILDREN 609 00:26:45,837 --> 00:26:46,037 HESITANT. 610 00:26:46,104 --> 00:26:47,605 THERE ARE HONEST DOUBTS ABOUT 611 00:26:47,672 --> 00:26:49,507 THE ABILITY OF CHILDREN TO GIVE 612 00:26:49,574 --> 00:26:50,775 VOICE TO WHAT THEIR BODY IS 613 00:26:50,842 --> 00:26:51,376 TELLING THEM. 614 00:26:51,443 --> 00:26:55,547 WE RECENTLY COMPLETED A SURVEY 615 00:26:55,613 --> 00:27:01,453 WITH 120 CLINICIANS TELLING US 616 00:27:01,519 --> 00:27:03,388 CHILDREN AS YOUNG AS AGE 4 FOR 617 00:27:03,455 --> 00:27:06,691 PEDIATRIC ONCOLOGY ARE ABLE TO 618 00:27:06,758 --> 00:27:08,493 GIVE THEM THEIR VOICE. 619 00:27:08,560 --> 00:27:08,960 ABOUT 12. 620 00:27:09,027 --> 00:27:11,096 OF THE CLIN ICES SAID THEY WERE 621 00:27:11,162 --> 00:27:12,764 LEERY OF BELIEVING THAT BUT THE 622 00:27:12,831 --> 00:27:14,866 REST INDICATED IT IS BELIEVABLE 623 00:27:14,933 --> 00:27:17,302 AND BELIEVABLE ENOUGH THEY MIGHT 624 00:27:17,369 --> 00:27:18,903 CHILDREN SUPPORTED CARE TO MEET 625 00:27:18,970 --> 00:27:20,505 THE DEMANDS OR THE NEEDS OF 626 00:27:20,572 --> 00:27:24,542 THESE CHILDREN. 627 00:27:24,609 --> 00:27:26,177 WHEN WE SEEK A CHILD'S VOICE, 628 00:27:26,244 --> 00:27:26,878 IT'S INTERESTING BECAUSE YOU 629 00:27:26,945 --> 00:27:30,248 WANT TO DO IT IN A WAY THAT 630 00:27:30,315 --> 00:27:33,018 DOESN'T TAKE AWAY A PARENTAL 631 00:27:33,084 --> 00:27:34,352 SENSE OF THEIR ESSENTIAL ROLE OF 632 00:27:34,419 --> 00:27:41,626 OUR REGARD FOR THEM. 633 00:27:41,693 --> 00:27:44,696 NOR DOES IT REPLACE THE 634 00:27:44,763 --> 00:27:48,767 CLINICIAN VOICE. 635 00:27:48,833 --> 00:27:50,402 IN PEDIATRIC PALLIATIVE CARE IN 636 00:27:50,468 --> 00:27:53,038 ONCOLOGY WE WANT ALL THREE 637 00:27:53,104 --> 00:27:53,271 VOICES. 638 00:27:53,338 --> 00:27:54,973 ONE DOESN'T TRUMP THE OTHER. 639 00:27:55,040 --> 00:27:56,441 THEY ALL THREE ARE NEEDED. 640 00:27:56,508 --> 00:27:58,176 AND IT MAY BE WHAT COMES OUT OF 641 00:27:58,243 --> 00:28:01,379 SEEKING ALL THREE IS A REALLY 642 00:28:01,446 --> 00:28:03,081 GOOD CLINICAL DISCUSSION ABOUT 643 00:28:03,148 --> 00:28:05,683 THE FAMILY IMPACT OF THIS 644 00:28:05,750 --> 00:28:10,121 DIAGNOSIS AND TREATMENT. 645 00:28:10,188 --> 00:28:11,790 >> IT SEEMS TO ME THE 646 00:28:11,856 --> 00:28:13,625 TRIANGULATION OF THE DATA WOULD 647 00:28:13,691 --> 00:28:19,464 HELP SHINE A LIGHT ON THE 648 00:28:19,531 --> 00:28:20,331 CRITICAL AREAS WHERE THERE'S A 649 00:28:20,398 --> 00:28:23,368 NEED AND WHERE SERVICES COULD BE 650 00:28:23,435 --> 00:28:28,039 PROVIDED I WANT TO PIGGY BACK ON 651 00:28:28,106 --> 00:28:29,240 SOMETHING SOMETHING DR. JOHNSON 652 00:28:29,307 --> 00:28:34,312 SAID IN HER TALK TALKING ABOUT 653 00:28:34,379 --> 00:28:40,585 HER NEED FOR QUALITATIVE 654 00:28:40,652 --> 00:28:40,852 RESEARCH. 655 00:28:40,919 --> 00:28:42,320 WHERE DOES IT FIT IN IN TERMS OF 656 00:28:42,387 --> 00:28:51,896 HAVING VOICES HEARD? 657 00:28:51,963 --> 00:28:53,298 >> ERICA YOU WOULD BE SPOT ON 658 00:28:53,364 --> 00:28:53,498 THIS. 659 00:28:53,565 --> 00:28:56,201 >> I'M GLAD TO ANSWER THAT 660 00:28:56,267 --> 00:28:56,468 QUESTION. 661 00:28:56,534 --> 00:28:58,136 QUALITATIVE RESEARCH IS 662 00:28:58,203 --> 00:28:59,471 AUTHENTIC STORY TELLING TO 663 00:28:59,537 --> 00:29:04,209 ELEVATE THE VOICES OF THOSE 664 00:29:04,275 --> 00:29:05,243 WHOSE LIVED EXPERIENCE ESSENTIAL 665 00:29:05,310 --> 00:29:08,680 TO OUR UNDERSTANDING FOR HOW WE 666 00:29:08,746 --> 00:29:16,121 CAN BEST SUPPORT INDIVIDUAL 667 00:29:16,187 --> 00:29:18,089 COMMUNITY'S HEALTH CARE SYSTEMS 668 00:29:18,156 --> 00:29:22,961 AND SO MUCH OF THE WORK IN 669 00:29:23,027 --> 00:29:25,296 PALLIATIVE CARE IS NUANCED AND 670 00:29:25,363 --> 00:29:35,907 DIFFICULT TO CAPTURE AND AU -- 671 00:29:37,909 --> 00:29:44,549 AU -- AUTHENTICALLY REPLAY THIS 672 00:29:44,616 --> 00:29:50,221 AND WHILE PIECES MAY BE TRUTHFUL 673 00:29:50,288 --> 00:29:52,223 ARE INCOMPLETE. 674 00:29:52,290 --> 00:29:56,094 TO THE WHOLISTIC NATURE AND IT'S 675 00:29:56,161 --> 00:29:58,096 INSTRUMENTAL IN HELPING TO 676 00:29:58,163 --> 00:30:00,365 CREATE AND FLUSH OUT THE WHOLE 677 00:30:00,431 --> 00:30:03,735 PICTURE STORY SO IT DOESN'T 678 00:30:03,801 --> 00:30:07,739 REPLACE QUANTITATIVE DATA IT 679 00:30:07,805 --> 00:30:11,709 SUPPORTS AND SUPPLEMENTS AND 680 00:30:11,776 --> 00:30:14,212 SORT OF LEADS WHEN STORY TELLING 681 00:30:14,279 --> 00:30:16,314 IS PARAMOUNT TO UNDERSTANDING 682 00:30:16,381 --> 00:30:24,122 THE SOURCE AND STEPS FORWARD TE 683 00:30:24,189 --> 00:30:25,690 ADDRESSING THE CHALLENGE. 684 00:30:25,757 --> 00:30:28,126 >> IT ADDS IN THE MISSING PIECES 685 00:30:28,193 --> 00:30:30,562 AND AMPLIFIES THE QUANTITATIVE 686 00:30:30,628 --> 00:30:33,531 DATA THAT CAN BE STACK AND ADDS 687 00:30:33,598 --> 00:30:34,299 THE POWER WE'RE MISSING. 688 00:30:34,365 --> 00:30:39,370 WELL STATED. 689 00:30:39,437 --> 00:30:42,707 >> ABSOLUTELY. 690 00:30:42,774 --> 00:30:48,279 ERICA, AND WHAT ARE SOME OF THE 691 00:30:48,346 --> 00:30:53,551 BARRIERS INNING THIS RESEARCH 692 00:30:53,618 --> 00:30:56,788 AND THE DEVELOPMENTAL ISSUES 693 00:30:56,854 --> 00:30:58,256 WITH YOURN CHILDREN AND HOW DO 694 00:30:58,323 --> 00:31:02,060 WE -- YOUNG CHILDREN ARE 695 00:31:02,126 --> 00:31:02,627 REFLECTING WHAT THEY'RE 696 00:31:02,694 --> 00:31:03,861 EXPERIENCING IN THEIR BODY. 697 00:31:03,928 --> 00:31:06,698 WHAT ARE OTHER BARRIERS IN DOING 698 00:31:06,764 --> 00:31:07,832 THIS KIND OF RESEARCH AND 699 00:31:07,899 --> 00:31:10,134 ADDRESSING THE NEEDS OF THESE 700 00:31:10,201 --> 00:31:13,538 CHILDREN AND THEIR FAMILIES. 701 00:31:13,605 --> 00:31:16,574 >> THAT'S A WONDERFUL QUESTION. 702 00:31:16,641 --> 00:31:22,113 10 YEARS AGO SOME BARRIERS I 703 00:31:22,180 --> 00:31:28,720 HEARD PEOPLE RAISE WITH GENUINE 704 00:31:28,786 --> 00:31:30,355 CONCERNS ARE WHAT I HEAR NOW AND 705 00:31:30,421 --> 00:31:31,522 THERE'S OPPORTUNITIES FOR US TO 706 00:31:31,589 --> 00:31:38,763 SHARE OUR EXPERIENCES AND THINK 707 00:31:38,830 --> 00:31:40,431 THROUGH BARRIERS AND DEBUNK 708 00:31:40,498 --> 00:31:50,174 FEARS REPACKAGED AS BARRIERS. 709 00:31:50,241 --> 00:31:52,176 THE MAIN BARRIERS IN QUALITATIVE 710 00:31:52,243 --> 00:31:53,811 RESEARCH TO ELEVATE THE VOICES 711 00:31:53,878 --> 00:31:58,783 OF PATIENTS AND FAMILIES WAS 712 00:31:58,850 --> 00:32:01,452 THAT IT WOULD BE A BURDEN ON 713 00:32:01,519 --> 00:32:01,653 THEM. 714 00:32:01,719 --> 00:32:05,290 WE AS PALLIATIVE CARE 715 00:32:05,356 --> 00:32:11,963 RESEARCHERS ARE INTIMATELY 716 00:32:12,030 --> 00:32:14,499 CONSUMED WITH THE BURDENS AND 717 00:32:14,565 --> 00:32:21,472 NONE OF US WANT TO IMPOSE A 718 00:32:21,539 --> 00:32:26,377 BURDEN BUT MY INSTINCT WAS TO 719 00:32:26,444 --> 00:32:28,413 ASK FAMILIES AND PATIENTS ON 720 00:32:28,479 --> 00:32:34,018 WHAT CAUSES A BURDEN AND WHAT WE 721 00:32:34,085 --> 00:32:37,322 FOUND WERE EVEN THE PATIENTS AND 722 00:32:37,388 --> 00:32:38,022 FAMILIES GOING THROUGH THE 723 00:32:38,089 --> 00:32:39,190 HIGHEST STRESSED TIME POINTS IN 724 00:32:39,257 --> 00:32:41,826 THEIR LIFE REALLY VALUED AN 725 00:32:41,893 --> 00:32:44,295 OPPORTUNITY TO BE ASKED WHAT 726 00:32:44,362 --> 00:32:47,398 THEIR PERSPECTIVE AND INSIGHTS 727 00:32:47,465 --> 00:32:47,598 WERE. 728 00:32:47,665 --> 00:32:52,136 IN PART IT'S BECAUSE THEY FEEL 729 00:32:52,203 --> 00:32:54,105 HEARD AND SEEN AND VALUED AS 730 00:32:54,172 --> 00:32:54,872 WHOLE PEOPLE. 731 00:32:54,939 --> 00:32:57,942 IN PART BECAUSE WHEN WE TALK TO 732 00:32:58,009 --> 00:33:03,381 PARENTS OR BEREAVED FAMILIES 733 00:33:03,448 --> 00:33:12,957 THERE'S A COMPONENT OF ALTRUISM 734 00:33:13,024 --> 00:33:19,831 AND HONOR THEIR CHILD'S LEGACY 735 00:33:19,897 --> 00:33:28,940 IN AN ONGOING FEEDBACK AND SOME 736 00:33:29,006 --> 00:33:30,541 FAMILIES OPT OUT BUT MANY ARE 737 00:33:30,608 --> 00:33:32,110 GRATEFUL TO BE GIVEN THE 738 00:33:32,176 --> 00:33:33,845 OPPORTUNITY TO PARTICIPATE IN 739 00:33:33,911 --> 00:33:34,312 QUALITATIVE RESEARCH. 740 00:33:34,379 --> 00:33:40,151 WE DID A STUDY WHERE WE ASKED ON 741 00:33:40,218 --> 00:33:42,887 THE SIDE WAS THIS EXPERIENCE 742 00:33:42,954 --> 00:33:45,223 BURDENSOME, PAINFUL TO YOU OR 743 00:33:45,289 --> 00:33:46,791 USEFUL AND NEUTRAL LANGUAGE AND 744 00:33:46,858 --> 00:33:50,528 WAS NOT THE GOAL OF THE RESEARCH 745 00:33:50,595 --> 00:33:52,130 IT WAS A TANGENTIAL QUESTION 746 00:33:52,196 --> 00:33:53,364 BECAUSE WE WERE CURIOUS AND 747 00:33:53,431 --> 00:33:58,836 GETTING PUSHBACK FROM REGULATORY 748 00:33:58,903 --> 00:34:04,142 FOLKS AND WERE AMAZED THE VAST 749 00:34:04,208 --> 00:34:05,209 MAJORITY SAID IT HIT WAS HELPFUL 750 00:34:05,276 --> 00:34:07,378 THOUGH THE GOAL WAS NOT TO HELP 751 00:34:07,445 --> 00:34:09,213 THEM BUT RATHER TO GAIN 752 00:34:09,280 --> 00:34:10,782 KNOWLEDGE TO HELP OTHER PEOPLE 753 00:34:10,848 --> 00:34:12,116 IN THE FUTURE. 754 00:34:12,183 --> 00:34:13,551 WE'VE SEEN THAT FINDING AFFIRMED 755 00:34:13,618 --> 00:34:14,852 IN SUBSEQUENT STUDIES AS WELL. 756 00:34:14,919 --> 00:34:19,357 I ENCOURAGE FOLKS WHEN YOU HEAR 757 00:34:19,424 --> 00:34:21,893 THE THAT QUALITATIVE WORK IS 758 00:34:21,959 --> 00:34:23,094 THIS TYPE OF ENGAGEMENT IN 759 00:34:23,161 --> 00:34:26,631 SCIENCE IS A BURDEN ON PATIENTS 760 00:34:26,697 --> 00:34:33,070 AND FAMILIES TO GENTLY PUSHBACK 761 00:34:33,137 --> 00:34:34,472 AND ALLOW THAT TO INFORM HOW YOU 762 00:34:34,539 --> 00:34:39,277 ENGAGE IN THE RESEARCH. 763 00:34:39,343 --> 00:34:42,713 >> WELL SAID. 764 00:34:42,780 --> 00:34:45,383 I'VE HEARD THE PHRASE TWICE THE 765 00:34:45,450 --> 00:34:48,686 PHRASE WHOLE PERSON 766 00:34:48,753 --> 00:34:50,421 COMPREHENSIVE CARE, VALUE 767 00:34:50,488 --> 00:34:50,721 MEANING. 768 00:34:50,788 --> 00:34:54,325 LET'S LEAN INTO THAT A LITTLE 769 00:34:54,392 --> 00:34:58,729 BIT AND I'M GOING TO ASK 770 00:34:58,796 --> 00:35:00,898 DANIELLE SAY SOMETHING ABOUT THE 771 00:35:00,965 --> 00:35:02,767 INTEREST GROUP AND THE 772 00:35:02,834 --> 00:35:03,401 MULTI-DISCIPLINARY NATURE OF 773 00:35:03,468 --> 00:35:05,803 THAT AND HOW DO WE BRING IN ALL 774 00:35:05,870 --> 00:35:07,104 THE COLLECTIVE VOICE TO CREATE 775 00:35:07,171 --> 00:35:12,210 AN ENVIRONMENT WHERE WE'RE 776 00:35:12,276 --> 00:35:13,578 FOCUSSING ON THE WHOLE PERSON 777 00:35:13,644 --> 00:35:16,848 AND LIFTING UP THE LEGACY OF THE 778 00:35:16,914 --> 00:35:21,118 CHILD OF THE FAMILY. 779 00:35:21,185 --> 00:35:22,119 WHAT COMMENTS DO YOU HAVE IN 780 00:35:22,186 --> 00:35:23,120 THAT REGARD? 781 00:35:23,187 --> 00:35:24,755 >> BEFORE I GO THERE FOR A 782 00:35:24,822 --> 00:35:30,328 SECOND I WAS GOING TO TOUCH 783 00:35:30,394 --> 00:35:33,764 BRIEFLY UPON WHAT ERICA SHARED 784 00:35:33,831 --> 00:35:35,833 BECAUSE WE HAD THE SAME 785 00:35:35,900 --> 00:35:36,400 EXPERIENCE. 786 00:35:36,467 --> 00:35:41,672 WE HAD PUSHBACK AROUND OUR IRB 787 00:35:41,739 --> 00:35:50,781 AROUND BENEFIT AND STRESS AND 788 00:35:50,848 --> 00:35:57,121 LITTLE OPEN ENDED QUESTION 789 00:35:57,188 --> 00:36:07,698 AROUND EXPERIENCE AND IT WAS 790 00:36:11,536 --> 00:36:15,239 MORE BENEFICIAL TO SHARE THEIR 791 00:36:15,306 --> 00:36:17,408 CHILD'S STORY AND HELP PARENTS 792 00:36:17,475 --> 00:36:18,476 GOING THROUGH THE SAME THING. 793 00:36:18,543 --> 00:36:19,644 I WANT TO DRIVE THAT HOME 794 00:36:19,710 --> 00:36:22,146 BECAUSE IT'S NEAR AND DEAR TO MY 795 00:36:22,213 --> 00:36:30,421 HEART. 796 00:36:30,488 --> 00:36:32,456 IT IS MULT DISCIPLINARY THOUGH I 797 00:36:32,523 --> 00:36:34,425 WOULD SAY THAT'S ONE AREA THAT 798 00:36:34,492 --> 00:36:37,094 WE HAVE BEEN REALLY TRYING TO 799 00:36:37,161 --> 00:36:42,166 FOCUS ON IS ENSURING THAT WE ARE 800 00:36:42,233 --> 00:36:44,869 EXTENDING INVITATIONS AND MAKING 801 00:36:44,936 --> 00:36:47,271 OUR GROUP KNOWN TO NOT ONLY 802 00:36:47,338 --> 00:36:49,407 PHYSICIANS WHICH THE GROUP TENDS 803 00:36:49,473 --> 00:36:51,776 TO BE IN CRITICAL CARE MEDICINE 804 00:36:51,842 --> 00:36:52,944 IS PHYSICIAN HEAVY, 805 00:36:53,010 --> 00:36:55,179 UNFORTUNATELY BUT TO NURSING AND 806 00:36:55,246 --> 00:36:58,649 NURSE PRACTITIONERS AND SOCIAL 807 00:36:58,716 --> 00:37:00,851 WORKERS AND CHILD LIFE AND 808 00:37:00,918 --> 00:37:01,419 EVERYBODY THAT TOUCHES THE 809 00:37:01,485 --> 00:37:07,792 CHILDREN WE CARE FOR IN A 810 00:37:07,858 --> 00:37:08,259 STRESSFUL ENVIRONMENT. 811 00:37:08,326 --> 00:37:09,894 THERE'S A REAL NEED TO SUPPORT 812 00:37:09,961 --> 00:37:11,128 CLINICIANS AND RESEARCHERS THAT 813 00:37:11,195 --> 00:37:13,831 ARE WORKING IN BOTH THESE 814 00:37:13,898 --> 00:37:16,133 ACADEMIC AND NON-ACADEMIC 815 00:37:16,200 --> 00:37:16,367 CENTERS. 816 00:37:16,434 --> 00:37:20,237 WE HAVE MANY CLINICIANS WHO WORK 817 00:37:20,304 --> 00:37:23,975 IN COMMUNITY HOSPITALS AND GIVEN 818 00:37:24,041 --> 00:37:25,710 THE UNDER STAFFING AND 819 00:37:25,776 --> 00:37:27,078 BURGEONING CLINICAL WORK FLOW 820 00:37:27,144 --> 00:37:28,846 EXPERIENCED BY THESE CLINICIANS, 821 00:37:28,913 --> 00:37:34,585 THEY DON'T HAVE AMPLE TIME FOR 822 00:37:34,652 --> 00:37:36,253 THINKING ABOUT QUALITY 823 00:37:36,320 --> 00:37:38,756 IMPROVEMENT OR RESEARCH OR THEY 824 00:37:38,823 --> 00:37:41,125 HAVE LIMITED INFRASTRUCTURE TO 825 00:37:41,192 --> 00:37:48,666 IMPROVE THE CARE THEY'RE 826 00:37:48,733 --> 00:37:49,500 PROVIDING DESPITE KNOWING 827 00:37:49,567 --> 00:37:52,069 THERE'S CARE TO BE MADE. 828 00:37:52,136 --> 00:37:54,605 UTILIZING THE SPECIAL INTEREST 829 00:37:54,672 --> 00:37:57,408 GROUPS TO THE EXTENT WE CAN MAKE 830 00:37:57,475 --> 00:38:01,612 OUTREACH ACROSS SITES ESPECIALLY 831 00:38:01,679 --> 00:38:03,614 TO THOSE WITHOUT SUB SPECIALTY 832 00:38:03,681 --> 00:38:05,182 PALLIATIVE CARE PROGRAMS WHICH 833 00:38:05,249 --> 00:38:07,451 THERE ARE A LOT, TO UNDERSTAND 834 00:38:07,518 --> 00:38:09,920 HOW THE NEEDS DIFFER AND HOW WE 835 00:38:09,987 --> 00:38:11,689 MIGHT PROVIDE SUPPORT IN THE 836 00:38:11,756 --> 00:38:14,158 FORM OF EITHER CREATING FORUMS 837 00:38:14,225 --> 00:38:16,060 TO DISCUSS CLINICAL DILEMMAS OR 838 00:38:16,127 --> 00:38:21,532 DIFFICULT CASES OR TO HELP EQUIP 839 00:38:21,599 --> 00:38:25,269 THEM WITH PALLIATIVE SKILLS FOR 840 00:38:25,336 --> 00:38:26,937 THEM OR THEIR TRAINEES IS 841 00:38:27,004 --> 00:38:29,340 IMPORTANT RIGHT NOW. 842 00:38:29,407 --> 00:38:30,541 >> ABSOLUTELY. 843 00:38:30,608 --> 00:38:32,677 ERICA, YOU'RE A LEADER IN 844 00:38:32,743 --> 00:38:34,812 AMERICAN ACADEMY OF HOSPICE AND 845 00:38:34,879 --> 00:38:35,846 PALLIATIVE MEDICINE. 846 00:38:35,913 --> 00:38:41,452 WHAT IS HHPM DOING TO SUPPORT 847 00:38:41,519 --> 00:38:46,190 RESEARCH AND HONE IN ON SHINING 848 00:38:46,257 --> 00:38:56,534 A LIGHT ON THESE VOICES? 849 00:38:56,600 --> 00:38:58,803 >> WE'RE COMING OFF ROBUST 850 00:38:58,869 --> 00:38:59,637 CONVERSATIONS NOT JUST AT THE 851 00:38:59,704 --> 00:39:02,840 AMERICAN ACADEMY OF HOSPICE AND 852 00:39:02,907 --> 00:39:05,276 IN PARTNERSHIP WITH LEADERSHIP 853 00:39:05,342 --> 00:39:09,847 WITH THE PREVIOUS PCRC AND NPCRC 854 00:39:09,914 --> 00:39:11,182 WITH A FOCUS ON HOW TO 855 00:39:11,248 --> 00:39:12,783 STRENGTHEN AND SUPPORT 856 00:39:12,850 --> 00:39:16,087 RESEARCHERS IN SERIOUS ILLNESS 857 00:39:16,153 --> 00:39:17,988 AND BEING PURPOSEFUL ABOUT 858 00:39:18,055 --> 00:39:21,192 FOCUSSING ON HOW WE SUPPORT 859 00:39:21,258 --> 00:39:23,360 PEDIATRIC PALLIATIVE CARE 860 00:39:23,427 --> 00:39:24,328 RESEARCH WITHIN THE COMMUNITY. 861 00:39:24,395 --> 00:39:27,465 I WANT TO HIGHLIGHT A COUPLE 862 00:39:27,531 --> 00:39:28,966 THINGS THAT HOPEFULLY ARE 863 00:39:29,033 --> 00:39:30,568 FAMILIAR TO MANY BUT IF NOT I 864 00:39:30,634 --> 00:39:32,436 ENCOURAGE YOU TO REACH OUT TO ME 865 00:39:32,503 --> 00:39:37,808 AND I'M GLAD TO CONNECT PEOPLE 866 00:39:37,875 --> 00:39:40,544 WITH AREAS OF INTEREST SO I WANT 867 00:39:40,611 --> 00:39:42,246 TO HIGHLIGHT A RESEARCH SCHOLAR 868 00:39:42,313 --> 00:39:43,614 PROGRAM WHICH HISTORICALLY HAS 869 00:39:43,681 --> 00:39:46,283 FUNDED A NUMBER OF PEDIATRIC 870 00:39:46,350 --> 00:39:47,184 PALLIATIVE CARE EARLY CAREER 871 00:39:47,251 --> 00:39:49,220 INVESTIGATORS AND IS A REALLY 872 00:39:49,286 --> 00:39:53,157 NICE MECHANISM TO HELP FOLKS 873 00:39:53,224 --> 00:39:54,492 LAUNCH A RESEARCH CAREER. 874 00:39:54,558 --> 00:39:56,694 IN THE PAST THIS HAS GOTTEN YOU 875 00:39:56,761 --> 00:40:01,866 AN INVITE TO THE ANNUAL AND PCRC 876 00:40:01,932 --> 00:40:08,606 FOLLY RETREAT AND THIS WILL 877 00:40:08,672 --> 00:40:10,808 CONTINUE AFTER THE END OF THE 878 00:40:10,875 --> 00:40:14,545 FOLEY RETREAT WITH THE SCHOLARS 879 00:40:14,612 --> 00:40:16,347 GETTING SPONSORED TO ATTEND 880 00:40:16,413 --> 00:40:18,182 OTHER MECHANISMS LIKE STATE OF 881 00:40:18,249 --> 00:40:18,549 THE SCIENCE. 882 00:40:18,616 --> 00:40:20,084 FOR THOSE LOOKING FOR WAYS TO 883 00:40:20,151 --> 00:40:24,188 NETWORK AND ENGAGE AT THE 884 00:40:24,255 --> 00:40:26,557 RESEARCH COMMUNITY AND RESEARCH 885 00:40:26,624 --> 00:40:27,858 SCHOLARS PROGRAM IS AN IMPORTANT 886 00:40:27,925 --> 00:40:28,125 MECHANISM. 887 00:40:28,192 --> 00:40:30,361 THE ACADEMY ALSO IS COORDINATING 888 00:40:30,427 --> 00:40:32,830 AND EXECUTING THE STATE OF THE 889 00:40:32,897 --> 00:40:33,864 SCIENCE MEETING WHICH HOPEFULLY 890 00:40:33,931 --> 00:40:36,367 MANY OF US ARE FAMILIAR WITH. 891 00:40:36,433 --> 00:40:39,236 IT'S CURRENTLY A BIENNIAL 892 00:40:39,303 --> 00:40:41,071 CONFERENCE AND THE GOAL IS FOR 893 00:40:41,138 --> 00:40:42,506 THIS TO BE A HOME FOR SERIOUS 894 00:40:42,573 --> 00:40:46,177 ILLNESS RESEARCHERS WITH 895 00:40:46,243 --> 00:40:47,812 PURPOSEFUL INCLUSION AND 896 00:40:47,878 --> 00:40:49,513 INVASION OF PALLIATIVE CARE 897 00:40:49,580 --> 00:40:51,315 RESEARCH UPON THE FORUM AND 898 00:40:51,382 --> 00:40:53,551 THERE'S ONGOING CONVERSATION AND 899 00:40:53,617 --> 00:40:58,189 ACTIVE PARTNERSHIP WITH PCRC 900 00:40:58,255 --> 00:41:00,591 LEADERSHIP TO HOPEFULLY DEVELOP 901 00:41:00,658 --> 00:41:02,927 FEDERALLY FUNDED CONSORTIUM TO 902 00:41:02,993 --> 00:41:04,795 SUPPORT SERIOUS ILLNESS 903 00:41:04,862 --> 00:41:06,797 RESEARCHERS. 904 00:41:06,864 --> 00:41:08,032 I WANT TO STRESS THERE ARE PLANS 905 00:41:08,098 --> 00:41:09,867 TO INCLUDE AND HIGHLIGHT THE 906 00:41:09,934 --> 00:41:10,668 IMPORTANCE OF SERIOUS ILLNESS 907 00:41:10,734 --> 00:41:11,669 RESEARCH FOR CHILDREN AND 908 00:41:11,735 --> 00:41:19,610 FAMILIES HERE. 909 00:41:19,677 --> 00:41:21,579 I'M REALLY EXCITED TO INTRODUCE 910 00:41:21,645 --> 00:41:24,048 HOT OFF THE PRESSES A NEW 911 00:41:24,114 --> 00:41:27,451 MECHANISM JUST APPROVED BY THE 912 00:41:27,518 --> 00:41:31,021 ACADEMY'S BOARD TO CREATE AND 913 00:41:31,088 --> 00:41:33,457 IMPLEMENT RESEARCH CORES OF 914 00:41:33,524 --> 00:41:40,197 EXPERTS TO HELP PROVIDE BOTH 915 00:41:40,264 --> 00:41:48,239 METHOLOGIC SUPPORT AND HOPING TO 916 00:41:48,305 --> 00:41:52,176 HAVE A RESEARCH MENTOR ACADEMY 917 00:41:52,243 --> 00:41:53,477 TO SUPPORT EARLY AND MID CAREER 918 00:41:53,544 --> 00:41:56,247 RESEARCHERS AND EVEN PEOPLE WHO 919 00:41:56,313 --> 00:41:58,182 CONSIDER THEMSELVES EARLY CAREER 920 00:41:58,249 --> 00:42:00,517 BUT ALSO HAVE A CAREER 921 00:42:00,584 --> 00:42:04,255 DEVELOPMENT AWARD OR K MECHANISM 922 00:42:04,321 --> 00:42:07,091 HAVE MENTORSHIP TO GIVE AS DO 923 00:42:07,157 --> 00:42:08,459 MID CAREER INDIVIDUALS. 924 00:42:08,525 --> 00:42:09,093 BRINGING THEM TOGETHER AND 925 00:42:09,159 --> 00:42:10,594 SUPPORTING THEM AND HELPING THEM 926 00:42:10,661 --> 00:42:12,229 IN THEIR PROMOTION PROCESS AND 927 00:42:12,296 --> 00:42:16,166 GIVING THEM SUPPORT TO MENTOR 928 00:42:16,233 --> 00:42:18,035 OTHERS IN A WAY THAT'S 929 00:42:18,102 --> 00:42:18,335 SUBSIDIZED. 930 00:42:18,402 --> 00:42:20,838 IT VALUES YOUR EXPERTISE AND 931 00:42:20,905 --> 00:42:23,440 TIME AND WE'RE LOOKING FORWARD 932 00:42:23,507 --> 00:42:25,776 TO EXPLAINING THIS PROGRAM IN A 933 00:42:25,843 --> 00:42:28,946 BIT MORE DETAIL AND AT THE 934 00:42:29,013 --> 00:42:31,782 UPCOMING STATE OF THE SCIENCE 935 00:42:31,849 --> 00:42:33,751 AND THERE SHOULD ALSO BE SOCIAL 936 00:42:33,817 --> 00:42:35,119 MEDIA AND MESSAGES COMING OUT TO 937 00:42:35,185 --> 00:42:41,292 HELP RECRUIT FOR THE PROGRAM. 938 00:42:41,358 --> 00:42:42,226 AND TO THE RESEARCH COMMITTEE 939 00:42:42,293 --> 00:42:45,095 DOES A LOT OF WORK TO HELP 940 00:42:45,162 --> 00:42:48,899 SUPPORT RESEARCH VOICES AND 941 00:42:48,966 --> 00:42:50,801 GOALS AND HAVE HISTORICALLY 942 00:42:50,868 --> 00:42:51,435 SUPPORTED SERIOUS ILLNESS 943 00:42:51,502 --> 00:42:53,537 RESEARCH FOR CHILDREN AND 944 00:42:53,604 --> 00:42:56,740 FAMILIES AND SO THIS COMMITTEE 945 00:42:56,807 --> 00:42:58,342 CAN REVIEW INVESTIGATOR-LED 946 00:42:58,409 --> 00:43:01,045 RESEARCH CONCEPTS AND REVIEW 947 00:43:01,111 --> 00:43:02,012 SURVEYS OTHER MATERIALS. 948 00:43:02,079 --> 00:43:04,915 WE CAN ALSO HELP REVIEW AND 949 00:43:04,982 --> 00:43:07,217 ENDORSE OR SANCTION WHITE PAPERS 950 00:43:07,284 --> 00:43:07,885 OR POSITION STATEMENTS THROUGH 951 00:43:07,952 --> 00:43:13,324 THE ACADEMY WHICH CAN BE VERY 952 00:43:13,390 --> 00:43:14,425 HELPFUL IN ADVOCACY EFFORTS. 953 00:43:14,491 --> 00:43:16,527 WE REVIEW AND SCORE SCHOLARLY 954 00:43:16,593 --> 00:43:21,966 WORKS INCLUDING ABSTRACTS FOR 955 00:43:22,032 --> 00:43:26,637 STATE OF THE SCIENCE AND HELP 956 00:43:26,704 --> 00:43:30,808 COORDINATE AND PARTNER WITH JPSM 957 00:43:30,874 --> 00:43:34,645 ON PUBLICATIONS. 958 00:43:34,712 --> 00:43:38,382 WE'VE DONE SYSTEMATIC REVIEWS OF 959 00:43:38,449 --> 00:43:40,117 LITERATURE AND IN THE PROCESS OF 960 00:43:40,184 --> 00:43:42,720 PUTTING TOGETHER ADVOCACY PIECES 961 00:43:42,786 --> 00:43:44,388 SPECIFIC TOWARDS SUPPORTING 962 00:43:44,455 --> 00:43:45,589 EARLY CAREER INVESTIGATORS IN 963 00:43:45,656 --> 00:43:55,265 SERIOUS ILLNESS RESEARCH. 964 00:43:55,332 --> 00:43:58,902 I'M GLAD TO CEDE THE FLOOR AND 965 00:43:58,969 --> 00:44:00,270 TAKE QUESTIONS RELATED TO THAT 966 00:44:00,337 --> 00:44:01,839 AND WE ENCOURAGE PEOPLE TO GET 967 00:44:01,905 --> 00:44:02,106 INVOLVED. 968 00:44:02,172 --> 00:44:02,940 THERE'S MOVEMENT AND DISCUSSION 969 00:44:03,007 --> 00:44:06,643 HOW THE ACADEMY SHOULD BETTER 970 00:44:06,710 --> 00:44:08,445 SUPPORT RESEARCH AND INTEREST IN 971 00:44:08,512 --> 00:44:10,647 SUPPORTING PEDIATRICS WITH THE 972 00:44:10,714 --> 00:44:14,218 RECENT DEVELOPMENT OF THE 973 00:44:14,284 --> 00:44:14,785 PEDIATRICS COUNCIL. 974 00:44:14,852 --> 00:44:16,620 NOW'S A GOOD TIME TO GET 975 00:44:16,687 --> 00:44:18,789 INVOLVED IF YOU'RE NOT ALREADY. 976 00:44:18,856 --> 00:44:19,590 >> ABSOLUTELY. 977 00:44:19,656 --> 00:44:23,694 IS THERE A WEBSITE PEOPLE CAN GO 978 00:44:23,761 --> 00:44:24,762 TO GET THE INFORMATION? 979 00:44:24,828 --> 00:44:30,834 >> HHPM CONNECT IS CONSIDERED 980 00:44:30,901 --> 00:44:34,571 THE BEST HUB THERE'S ALSO LIST 981 00:44:34,638 --> 00:44:34,805 SERVES. 982 00:44:34,872 --> 00:44:37,875 I'LL SHOUT OUT IF YOU'RE AN 983 00:44:37,941 --> 00:44:38,842 EARLY CAREER INVESTIGATOR TO 984 00:44:38,909 --> 00:44:41,945 REACH OUT TO DR. AMY PORTER WHO 985 00:44:42,012 --> 00:44:43,814 IS LEADING THE EARLY 986 00:44:43,881 --> 00:44:45,749 INVESTIGATOR FORUM WHICH IS A 987 00:44:45,816 --> 00:44:48,385 PRETTY ROBUST LIST SERVE AND 988 00:44:48,452 --> 00:44:49,887 THERE'S A RESEARCH SIG AND 989 00:44:49,953 --> 00:44:52,322 BETWEEN THE TWO LIST SERVES I 990 00:44:52,389 --> 00:45:00,330 THINK IT'S PROBABLY 600 OR 700 991 00:45:00,397 --> 00:45:04,968 MEMBERS STRONG AND GROWING. 992 00:45:05,035 --> 00:45:10,174 AND PCRC HAD IMPORTANT AND 993 00:45:10,240 --> 00:45:12,543 HIGHLY NETWORKED 994 00:45:12,609 --> 00:45:13,444 COMMUNITY-COMMUNITY CENTERED 995 00:45:13,510 --> 00:45:18,615 SPECIAL INTEREST GROUPS THAT 996 00:45:18,682 --> 00:45:20,117 WILL BE MOVING UNDER THE 997 00:45:20,184 --> 00:45:21,518 AUSPICES OF THE ACADEMY AND 998 00:45:21,585 --> 00:45:22,753 RESEARCH COMMUNITY TO HELP 999 00:45:22,820 --> 00:45:25,155 SUPPORT THE ADMINISTRATIVE NEEDS 1000 00:45:25,222 --> 00:45:26,423 AND PROCESSES. 1001 00:45:26,490 --> 00:45:27,591 THOSE ARE ALSO GOOD COMMUNITIES 1002 00:45:27,658 --> 00:45:30,961 TO PLUG INTO. 1003 00:45:31,028 --> 00:45:35,899 FAN 1004 00:45:35,966 --> 00:45:40,370 >> FANTASTIC. 1005 00:45:40,437 --> 00:45:41,605 WONDERFUL. 1006 00:45:41,672 --> 00:45:42,139 THERE'S GOING TO BE A 1007 00:45:42,206 --> 00:45:42,806 PRESENTATION ON THE WORKFORCE 1008 00:45:42,873 --> 00:45:44,341 AND WE HAVE FIVE MINUTES OR SO 1009 00:45:44,408 --> 00:45:44,708 LEFT. 1010 00:45:44,775 --> 00:45:46,944 IF YOU CAN SAY A WORD OR TWO 1011 00:45:47,010 --> 00:45:49,012 ABOUT MAYBE SOME LESSONS LEARNED 1012 00:45:49,079 --> 00:45:53,717 YOU HAVE IN DOING THIS WORK AND 1013 00:45:53,784 --> 00:45:56,854 WHAT COMPELLED YOU TO GO INTO 1014 00:45:56,920 --> 00:45:58,789 THIS FIELD IN THE FIRST PLACE TO 1015 00:45:58,856 --> 00:46:00,491 DO THIS WORK AND WHAT LESSONS 1016 00:46:00,557 --> 00:46:01,859 YOU MIGHT BE ABLE TO SHARE FOR 1017 00:46:01,925 --> 00:46:04,695 AN EARLY STAGE INVESTIGATOR WHO 1018 00:46:04,761 --> 00:46:05,562 MIGHT BE THINKING ABOUT WHETHER 1019 00:46:05,629 --> 00:46:08,298 OR NOT THEY WANT TO DO RESEARCH 1020 00:46:08,365 --> 00:46:08,966 IN THIS AREA? 1021 00:46:09,032 --> 00:46:10,868 I'LL START LASE WITH YOU. 1022 00:46:10,934 --> 00:46:15,839 ANY LESSONS LEARNED WORDS OF 1023 00:46:15,906 --> 00:46:17,841 ENCOURAGE THE FOR FOLKS GOING IN 1024 00:46:17,908 --> 00:46:19,176 THE AREA? 1025 00:46:19,243 --> 00:46:21,845 HOW DO WE BUILD THAT PIPELINE? 1026 00:46:21,912 --> 00:46:23,147 >> I THINK WHEN YOU START 1027 00:46:23,213 --> 00:46:24,581 RESEARCH CAN SEEM INTIMIDATING 1028 00:46:24,648 --> 00:46:27,684 AND WHEN YOU TALK TO OTHERS IN 1029 00:46:27,751 --> 00:46:29,119 THIS FIELD THEY USE WORDS YOU 1030 00:46:29,186 --> 00:46:31,054 MAY NOT BE FAMILIAR WITH. 1031 00:46:31,121 --> 00:46:32,990 I THINK IF YOU REALIZE YOU'RE 1032 00:46:33,056 --> 00:46:34,525 STARTING OFF WITH A QUESTION, 1033 00:46:34,591 --> 00:46:38,996 RESEARCH IS ONLY A QUESTION YOU 1034 00:46:39,062 --> 00:46:40,130 WANT TO BE ANSWERED. 1035 00:46:40,197 --> 00:46:41,532 FIND SOMEONE TO HELP YOU ANSWER 1036 00:46:41,598 --> 00:46:42,132 THAT QUESTION. 1037 00:46:42,199 --> 00:46:44,134 DON'T BE INTIMIDATED BY THE 1038 00:46:44,201 --> 00:46:48,405 DIFFERENT WORDS OR PHRASING 1039 00:46:48,472 --> 00:46:49,106 AROUND IT REMEMBER YOU'RE ASKING 1040 00:46:49,173 --> 00:46:50,274 THE QUESTION BECAUSE I WANT TO 1041 00:46:50,340 --> 00:46:55,946 MAKE THE LIVES BETTER FOR YOUR 1042 00:46:56,013 --> 00:46:57,214 PATIENTS I THINK YOU HEARD 1043 00:46:57,281 --> 00:47:01,218 RESOURCES ABOUT GROUPS THAT CAN 1044 00:47:01,285 --> 00:47:01,552 HELP YOU. 1045 00:47:01,618 --> 00:47:02,886 AND FIND SOMEONE TO HELP YOU 1046 00:47:02,953 --> 00:47:04,221 ANSWER THE QUESTION BECAUSE 1047 00:47:04,288 --> 00:47:05,789 THAT'S WHAT RESEARCH IS IS 1048 00:47:05,856 --> 00:47:07,324 TRYING TO FIND THE BEST WAY TO 1049 00:47:07,391 --> 00:47:09,393 ANSWER THE QUESTION YOU HAVE. 1050 00:47:09,459 --> 00:47:11,261 THAT'S ALL IT IS. 1051 00:47:11,328 --> 00:47:12,663 EVERYTHING ELSE FALLS INTO PLACE 1052 00:47:12,729 --> 00:47:15,299 ONCE YOU REALIZE YOU JUST HAVE A 1053 00:47:15,365 --> 00:47:16,533 QUESTION YOU WANT TO BE 1054 00:47:16,600 --> 00:47:16,800 ANSWERED. 1055 00:47:16,867 --> 00:47:19,770 >> PAM. 1056 00:47:19,836 --> 00:47:22,773 >> I VERY MUCH SUPPORT WHAT LASE 1057 00:47:22,839 --> 00:47:26,476 JUST SAID SO THANK YOU FOR THAT. 1058 00:47:26,543 --> 00:47:31,415 WE HAVE AN ADDITIONAL SOURCE OF 1059 00:47:31,481 --> 00:47:32,849 INFORMATION WE DIDN'T HAVE 15 1060 00:47:32,916 --> 00:47:35,919 YEARS AGO AND GROUPS THAT HAVE 1061 00:47:35,986 --> 00:47:39,356 MADE RESEARCH PRIORITIES THE 1062 00:47:39,423 --> 00:47:41,225 HOSPICE AND PALLIATIVE NURSING 1063 00:47:41,291 --> 00:47:43,627 ASSOCIATION HAS JUST COME OUT 1064 00:47:43,694 --> 00:47:46,196 ONE WILL THE 2023 TO 2026 1065 00:47:46,263 --> 00:47:51,201 RESEARCH PRIORITIES WELL 1066 00:47:51,268 --> 00:47:53,470 GROUNDED WITH PARENT ADVICE AS 1067 00:47:53,537 --> 00:47:57,674 WELL AND WE HAVE KIND OF A 1068 00:47:57,741 --> 00:47:58,976 CONSENSUS ACROSS NATIONAL AND 1069 00:47:59,042 --> 00:48:00,611 INITIAL AND RECOMMENDATIONS 1070 00:48:00,677 --> 00:48:02,779 COMING TO US FOR PEDIATRIC 1071 00:48:02,846 --> 00:48:04,081 PALLIATIVE CARE AND THOUGH THERE 1072 00:48:04,147 --> 00:48:07,150 ARE UNIQUE TOPICS WITHIN EACH OF 1073 00:48:07,217 --> 00:48:09,753 THOSE, COMMONALITIES ARE 1074 00:48:09,820 --> 00:48:12,022 COMMUNITY TRAINING FOR HEALTH 1075 00:48:12,089 --> 00:48:13,924 CARE PROFESSIONALS AND DECISION 1076 00:48:13,991 --> 00:48:15,359 MAKING AS RESEARCH PRIORITIES 1077 00:48:15,425 --> 00:48:17,160 WANTING NEW QUESTIONS TO BE 1078 00:48:17,227 --> 00:48:18,795 ASKED ABOUT THOSE TWO IN 1079 00:48:18,862 --> 00:48:26,203 PARTICULAR. 1080 00:48:26,270 --> 00:48:26,703 THANK YOU. 1081 00:48:26,770 --> 00:48:34,378 >> THANK YOU. 1082 00:48:34,444 --> 00:48:37,714 >> IT'S AN INCREDIBLY WELCOMING 1083 00:48:37,781 --> 00:48:40,550 AND FRIENDLY GROUP OF 1084 00:48:40,617 --> 00:48:44,254 RESEARCHERS AND CLINICIANS AND I 1085 00:48:44,321 --> 00:48:47,524 WOULD SAY MAKING SURE YOU HAVE A 1086 00:48:47,591 --> 00:48:51,762 WIDE ARRAY OF PEOPLE IN YOUR 1087 00:48:51,828 --> 00:48:54,998 MENTORSHIP AND CO-INVESTIGATOR 1088 00:48:55,065 --> 00:48:56,700 GROUP EITHER PEOPLE THAT YOU 1089 00:48:56,767 --> 00:49:00,170 WORK WITH LOCALLY OR PEOPLE YOU 1090 00:49:00,237 --> 00:49:01,171 MEET NATIONALLY AND NOT BEING 1091 00:49:01,238 --> 00:49:03,507 AFRAID TO REACH OUT TO ANY OF US 1092 00:49:03,573 --> 00:49:04,908 OR TO ANYONE IN THE FIELD 1093 00:49:04,975 --> 00:49:05,475 REALLY. 1094 00:49:05,542 --> 00:49:07,744 PEOPLE ARE SO WELCOMING. 1095 00:49:07,811 --> 00:49:09,780 IF THEY ARE NOT IN A POSITION TO 1096 00:49:09,846 --> 00:49:12,549 BE ABLE TO HELP YOU OR WORK WITH 1097 00:49:12,616 --> 00:49:14,151 YOU, THEY CERTAINLY WILL BE ABLE 1098 00:49:14,217 --> 00:49:15,752 TO REFER YOU TO SOMEBODY ELSE 1099 00:49:15,819 --> 00:49:17,187 WHO CAN. 1100 00:49:17,254 --> 00:49:17,854 >> NICE. 1101 00:49:17,921 --> 00:49:27,764 >> AMEN TO THAT. 1102 00:49:27,831 --> 00:49:29,766 >> IN THE TIMES OF MY CAREER 1103 00:49:29,833 --> 00:49:30,901 WHERE I FELT STRUCK AND WASN'T 1104 00:49:30,967 --> 00:49:35,272 SURE HOW TO NAVIGATE A RESEARCH 1105 00:49:35,339 --> 00:49:37,374 PROTOCOL FELT THE GRANT I WAS 1106 00:49:37,441 --> 00:49:38,408 WRITING WAS BAD OR THE PAPER WAS 1107 00:49:38,475 --> 00:49:40,377 NOT COMING TOGETHER, I THINK 1108 00:49:40,444 --> 00:49:42,279 WHAT HELPED ME MORE THAN 1109 00:49:42,346 --> 00:49:49,853 ANYTHING WAS CENTERING MYSELF IN 1110 00:49:49,920 --> 00:49:50,954 SORY TELLING BECAUSE ULTIMATELY 1111 00:49:51,021 --> 00:49:55,325 WHAT WE'RE DOING IS TELLING A 1112 00:49:55,392 --> 00:49:57,561 STORY ABOUT WHY SOMETHING 1113 00:49:57,627 --> 00:50:03,166 MATTERS AND I THINK WE CONNECT 1114 00:50:03,233 --> 00:50:13,777 MOST AND IT DIDN'T INCENTIVE US 1115 00:50:24,788 --> 00:50:27,290 WE'RE TAUGHT TO BE RIGOROUS AND 1116 00:50:27,357 --> 00:50:29,793 EXACTING AND ENCOURAGE FOLKS IF 1117 00:50:29,860 --> 00:50:31,294 SOMETHING DOESN'T FEEL RIGHT AND 1118 00:50:31,361 --> 00:50:33,764 NOT CLICKING TO NOT MASSAGE YOUR 1119 00:50:33,830 --> 00:50:38,201 SCIENTIFIC POINT BUT TO CONTROL, 1120 00:50:38,268 --> 00:50:39,569 ALT, DELETE, RESET AND ASK 1121 00:50:39,636 --> 00:50:40,637 YOURSELF THE STORY. 1122 00:50:40,704 --> 00:50:43,940 HOW CAB I TELL A STORY THAT 1123 00:50:44,007 --> 00:50:44,641 MATTERS TO OTHERS AS MUCH AS IT 1124 00:50:44,708 --> 00:50:48,345 MATTERS TO ME. 1125 00:50:48,412 --> 00:50:49,746 >> THANK YOU SO MUCH. 1126 00:50:49,813 --> 00:50:52,482 WHAT INSPIRING WORDS TO END ON. 1127 00:50:52,549 --> 00:50:54,484 LASE, PAM, DANIELLE AND ERICA, 1128 00:50:54,551 --> 00:50:55,552 THANK YOU AGAIN FOR YOUR TIME 1129 00:50:55,619 --> 00:50:58,655 TODAY AND FOR ALL OF THESE 1130 00:50:58,722 --> 00:51:00,457 ENCOURAGING AND ENLIGHTENING 1131 00:51:00,524 --> 00:51:00,757 WORDS. 1132 00:51:00,824 --> 00:51:04,194 AT THIS TIME I AM GOING TO TURN 1133 00:51:04,261 --> 00:51:10,066 OVER THE VIRTUAL PODIUM TO 1134 00:51:10,133 --> 00:51:14,504 DR. LORI WIENER ON PSYCHOSOCIAL 1135 00:51:14,571 --> 00:51:16,907 IMPACT OF PEDIATRIC PALLIATIVE 1136 00:51:16,973 --> 00:51:17,240 CARE. 1137 00:51:17,307 --> 00:51:18,809 >> THANK YOU SO MUCH. 1138 00:51:18,875 --> 00:51:21,812 WHAT A FABULOUS SESSION. 1139 00:51:21,878 --> 00:51:25,582 LET ME BEGIN BY ALSO THANKING 1140 00:51:25,649 --> 00:51:28,552 DR. OCTOBER AND MAHOMES AND 1141 00:51:28,618 --> 00:51:33,590 NICHD FOR THIS IMPORTANT 1142 00:51:33,657 --> 00:51:36,493 CONFERENCE AND ERICA YOU 1143 00:51:36,560 --> 00:51:42,299 COULDN'T HAVE SET US UP BETTER 1144 00:51:42,365 --> 00:51:43,333 ON PSYCHOSOCIAL ISSUES AND THANK 1145 00:51:43,400 --> 00:51:46,269 YOU TO OUR PANELISTS WHO HAVE 1146 00:51:46,336 --> 00:51:48,572 BEEN ABLE TO HELP INFORM OUR 1147 00:51:48,638 --> 00:51:49,272 NEXT SESSION. 1148 00:51:49,339 --> 00:51:52,242 ON THE PSYCHOSOCIAL IMPACT ON 1149 00:51:52,309 --> 00:51:57,280 PEDIATRIC PALLIATIVE CARE. 1150 00:51:57,347 --> 00:52:01,651 WE HAVE KIM MOON E-DOYLE AT THE 1151 00:52:01,718 --> 00:52:02,652 UNIVERSITY OF MARYLAND 1152 00:52:02,719 --> 00:52:03,753 UNIVERSITY OF NURSING. 1153 00:52:03,820 --> 00:52:06,423 THE PROGRAM DESCRIBE THE IMPACT 1154 00:52:06,490 --> 00:52:09,860 OF PEDIATRIC SERIOUS ILLNESS ON 1155 00:52:09,926 --> 00:52:13,630 FAMILIES, FACTORS SUCH AS SOCIAL 1156 00:52:13,697 --> 00:52:15,966 DETERMINATES, THE INFLUENCE OF 1157 00:52:16,032 --> 00:52:18,201 CHILD AND FAMILY HEALTH THROUGH 1158 00:52:18,268 --> 00:52:21,338 COMMUNITY PARTNERSHIP FOR 1159 00:52:21,404 --> 00:52:23,540 INTERVENTION DEVELOPMENT. 1160 00:52:23,607 --> 00:52:26,042 TODAY DR. MOONEY'S GOAL WHICH 1161 00:52:26,109 --> 00:52:27,677 HAS BEEN TO ENHANCE FAMILY 1162 00:52:27,744 --> 00:52:29,279 HEALTH AND FAMILY HEALTH EQUITY 1163 00:52:29,346 --> 00:52:32,616 WILL BE TALKING ABOUT FAMILY 1164 00:52:32,682 --> 00:52:34,818 IMPACT OF SERIOUS PEDIATRIC 1165 00:52:34,885 --> 00:52:36,453 ILLNESS AND WILL BE INTRODUCING 1166 00:52:36,520 --> 00:52:41,725 A SPECIAL GUEST TO ADDRESS THE 1167 00:52:41,791 --> 00:52:51,401 LIVED EXPERIENCE, JENNIFER 1168 00:52:51,468 --> 00:52:53,370 SIDEMAN CO-PRESENTING. 1169 00:52:53,436 --> 00:52:54,538 >> THANK YOU. 1170 00:52:54,604 --> 00:52:56,172 IT'S AN HONOR TO BE WITH YOU ALL 1171 00:52:56,239 --> 00:53:03,246 AND I'M EXCITED TO CO-PRESENT 1172 00:53:03,313 --> 00:53:13,757 WITH MS. JENNIER SIEDMAN. 1173 00:53:15,692 --> 00:53:20,697 SHE SERVE AS THE PRESIDENT'S OF 1174 00:53:20,764 --> 00:53:26,136 BEN'S DREAMED AND CO-AUTHORED 1175 00:53:26,202 --> 00:53:28,204 AND RECEIVED NUMEROUS AWARDS FOR 1176 00:53:28,271 --> 00:53:36,179 HER WORK. 1177 00:53:36,246 --> 00:53:37,514 I'D LIKE TO START WITH THANK 1178 00:53:37,581 --> 00:53:38,782 YOUs AND ACKNOWLEDGEMENTS. 1179 00:53:38,848 --> 00:53:40,216 WE WANT TO THANK THE CHILDREN 1180 00:53:40,283 --> 00:53:43,386 AND FAMILIES WHO OVER THE 1181 00:53:43,453 --> 00:53:45,956 DECADES OF PEDIATRIC PALLIATIVE 1182 00:53:46,022 --> 00:53:49,326 CARE INSIGHTS HELPED ADVANCE THE 1183 00:53:49,392 --> 00:53:51,728 SCIENCE OF PEDIATRIC PALLIATIVE 1184 00:53:51,795 --> 00:53:54,798 CARE AND WOULD LIKE TO THANK 1185 00:53:54,864 --> 00:53:57,233 DR. OCTOBER FOR CREATING THE 1186 00:53:57,300 --> 00:54:03,173 SPACE OF THE SYMPOSIUM AND THE 1187 00:54:03,239 --> 00:54:04,140 RESEARCHERS PRESENTING OVER THE 1188 00:54:04,207 --> 00:54:05,241 PAST TWO DAYS AND THOSE 1189 00:54:05,308 --> 00:54:08,612 ATTENDING AND DOING THE WORK. 1190 00:54:08,678 --> 00:54:11,081 WE KNOW IT TAKES A VILLAGE TO 1191 00:54:11,147 --> 00:54:14,317 ADVANCE THE SCIENCE AND WANT TO 1192 00:54:14,384 --> 00:54:16,019 ACKNOWLEDGE THE FUNDING THAT HAS 1193 00:54:16,086 --> 00:54:16,620 CONTRIBUTED TO THE DISCUSSION 1194 00:54:16,686 --> 00:54:26,997 WE'LL HAVE TODAY. 1195 00:54:55,058 --> 00:54:56,159 FAMILIES ARE A DETERMINATE OF 1196 00:54:56,226 --> 00:55:02,799 HEALTH AND WARRANT ATTENTION AND 1197 00:55:02,866 --> 00:55:06,636 SUPPORT. 1198 00:55:06,703 --> 00:55:09,739 A MOM SHARED A QUOTE THAT STILL 1199 00:55:09,806 --> 00:55:10,440 RESONATES WITH ME. 1200 00:55:10,507 --> 00:55:16,946 CANCER IS A FAMILY DISEASE AND 1201 00:55:17,013 --> 00:55:18,181 PARAPHRASE HER WORDS AND SAY 1202 00:55:18,248 --> 00:55:20,417 SERIOUS ILLNESS IS A FAMILY 1203 00:55:20,483 --> 00:55:21,017 DISEASE. 1204 00:55:21,084 --> 00:55:25,422 WE'D LIKE TO OFFER THIS AS IT 1205 00:55:25,488 --> 00:55:34,798 DEMONSTRATES THE RIPPLE A 1206 00:55:34,864 --> 00:55:42,872 SERIOUS ILLNESS CAN HAVE AND WE 1207 00:55:42,939 --> 00:55:43,740 CAN LOOK AT DIFFERENT 1208 00:55:43,807 --> 00:55:44,874 DEFINITIONS OF FAMILY BUT TODAY 1209 00:55:44,941 --> 00:55:47,177 WE DEFINE IT AS A GROUP OF 1210 00:55:47,243 --> 00:55:48,645 INDIVIDUALS BOUND BY STRONG 1211 00:55:48,712 --> 00:55:49,979 EMOTIONAL TIES, A SENSE OF 1212 00:55:50,046 --> 00:55:51,381 BELONG AND PASSION FOR BEING 1213 00:55:51,448 --> 00:55:54,484 INVOLVED IN ONE ANOTHER'S LIVES. 1214 00:55:54,551 --> 00:55:56,419 FAMILY IS ALSO A BASIC 1215 00:55:56,486 --> 00:55:58,421 FUNCTIONAL UNIT OF SOCIETY AND 1216 00:55:58,488 --> 00:56:01,124 AFFORDS MANY FUNCTIONS SUCH AS 1217 00:56:01,191 --> 00:56:02,358 SOCIALIZATION, PROTECTION, 1218 00:56:02,425 --> 00:56:05,328 PASSING ON OF CULTURE. 1219 00:56:05,395 --> 00:56:06,529 THUS, FAMILIES AND THEIR 1220 00:56:06,596 --> 00:56:09,032 CONSTITUENT MEMBERS ARE 1221 00:56:09,099 --> 00:56:09,299 POWERFUL. 1222 00:56:09,365 --> 00:56:11,401 DESPITE THIS POWER THE IMPACT ON 1223 00:56:11,468 --> 00:56:12,335 FAMILIES CAN BE INVISIBLE AND 1224 00:56:12,402 --> 00:56:15,205 THEIR FUNCTIONS TAKEN FOR 1225 00:56:15,271 --> 00:56:18,775 GRANTED YET FAMILIES FORM THE 1226 00:56:18,842 --> 00:56:20,810 BACKBONE OF SERIOUS ILLNESS CARE 1227 00:56:20,877 --> 00:56:25,148 AND IMPORTANT RECIPIENTS OF 1228 00:56:25,215 --> 00:56:26,883 PALLIATIVE CARE IN THE HOME AND 1229 00:56:26,950 --> 00:56:27,183 COMMUNITY. 1230 00:56:27,250 --> 00:56:27,851 SO LATS TAKE A LOOK AT THE 1231 00:56:27,917 --> 00:56:31,888 NUMBERS FOR A MORE GRANULAR 1232 00:56:31,955 --> 00:56:32,689 UNDERSTANDING. 1233 00:56:32,756 --> 00:56:34,457 WORLDWIDE, ABOUT 10 MILLION 1234 00:56:34,524 --> 00:56:36,326 CHILDREN WOULD BENEFIT FROM 1235 00:56:36,392 --> 00:56:39,229 PEDIATRIC PALLIATIVE CARE. 1236 00:56:39,295 --> 00:56:40,063 ESTIMATES INDICATE IN THE 1237 00:56:40,130 --> 00:56:42,532 U.S. FROM 100 TO 400,000 1238 00:56:42,599 --> 00:56:44,367 CHILDREN WOULD BENEFIT FROM 1239 00:56:44,434 --> 00:56:45,201 PALLIATIVE CARE. 1240 00:56:45,268 --> 00:56:47,370 THEY MAY REQUIRE LIMITED OR 1241 00:56:47,437 --> 00:56:49,806 EXTENSIVE CARE AND SUPPORT FOR 1242 00:56:49,873 --> 00:56:50,607 THEIR ILLNESS. 1243 00:56:50,673 --> 00:56:55,512 IN THE U.S., ABOUT 60% TO 70% OF 1244 00:56:55,578 --> 00:56:57,380 THE CHILDREN WHO RECEIVE 1245 00:56:57,447 --> 00:56:59,415 PEDIATRIC PALLIATIVE CARE HAVE A 1246 00:56:59,482 --> 00:56:59,849 SIBLING. 1247 00:56:59,916 --> 00:57:04,120 THESE SIBLINGS ARE ALSO CHILDREN 1248 00:57:04,187 --> 00:57:12,128 IN ADD -- ADOLESCENCE AND YOUNG 1249 00:57:12,195 --> 00:57:13,263 ADULTS AFFECTED AND GET LESS 1250 00:57:13,329 --> 00:57:17,634 TIME WITH PARENTS OR POTENTIALLY 1251 00:57:17,700 --> 00:57:19,202 LESS ATTENTION FROM PARENTS AND 1252 00:57:19,269 --> 00:57:21,137 THEY SIBLING PERCEIVE POOR 1253 00:57:21,204 --> 00:57:22,238 COMMUNICATION ABOUT THE DISEASE 1254 00:57:22,305 --> 00:57:24,541 OR CHANGES IN THEIR PERCEIVED 1255 00:57:24,607 --> 00:57:26,643 ROLE IN THE FAMILY. 1256 00:57:26,709 --> 00:57:27,243 SIBLINGS OFTEN REFRAME THEIR 1257 00:57:27,310 --> 00:57:28,745 ROLE WITHIN THE FAMILY AND 1258 00:57:28,812 --> 00:57:30,780 PROVIDE SUPPORT AS A PLAYMATE OR 1259 00:57:30,847 --> 00:57:32,649 PERHAPS WITH THE PASSAGE OF TIME 1260 00:57:32,715 --> 00:57:34,217 CAREGIVERS TO THEIR SERIOUSLY 1261 00:57:34,284 --> 00:57:36,352 ILL BROTHER OR SISTER. 1262 00:57:36,419 --> 00:57:38,888 THEY EXPERIENCE IMPACTS FROM 1263 00:57:38,955 --> 00:57:40,990 SHIFTS IN ATTENTION, ALTERATIONS 1264 00:57:41,057 --> 00:57:42,826 TO THEIR NORMAL ROUTINE AND THE 1265 00:57:42,892 --> 00:57:53,369 ABSENCE OF A PLAY MIGHT OR 1266 00:57:56,873 --> 00:57:57,006 CONFIDANT. 1267 00:57:57,073 --> 00:57:58,975 THE AMOUNT OF WORK PARENTS DO 1268 00:57:59,042 --> 00:58:03,213 CAN BE INVASIVE IN DAILY LIFE 1269 00:58:03,279 --> 00:58:05,448 AND PROVIDE MANY HOURS OF CARE 1270 00:58:05,515 --> 00:58:07,650 PER WEEK AND SIMULTANEOUSLY MANY 1271 00:58:07,717 --> 00:58:10,053 FACE MOUNTING FINANCIAL 1272 00:58:10,119 --> 00:58:10,954 DIFFICULTIES AND MUST SPEND A 1273 00:58:11,020 --> 00:58:12,188 GREAT DEAL OF TIME COORDINATING 1274 00:58:12,255 --> 00:58:15,558 CARE AND INTERACTING WITH 1275 00:58:15,625 --> 00:58:16,626 BUREAUCRACIES TO ENSURE THE 1276 00:58:16,693 --> 00:58:17,927 PROPER CARE OF THEIR CHILD AND 1277 00:58:17,994 --> 00:58:19,329 DEAL WITH THEIR OWN EMPLOYMENT 1278 00:58:19,395 --> 00:58:21,197 AND CONTEND WITH OTHER FAMILY 1279 00:58:21,264 --> 00:58:23,266 RELATIONSHIPS SUCH AS THOSE WITH 1280 00:58:23,333 --> 00:58:23,900 THEIR PARTNER AND THEIR HEALTHY 1281 00:58:23,967 --> 00:58:31,241 CHILDREN. 1282 00:58:31,307 --> 00:58:33,443 WE SEE A PICTURE EMERGE OF 1283 00:58:33,509 --> 00:58:36,012 FAMILIES WHO STRUGGLE WITH 1284 00:58:36,079 --> 00:58:36,813 ILLNESS MANAGEMENT AND CARE OF 1285 00:58:36,880 --> 00:58:37,680 THEIR FAMILY AND LIFE BEYOND THE 1286 00:58:37,747 --> 00:58:40,750 ILL PENN STATE. 1287 00:58:40,817 --> 00:58:46,222 -- ILLNESS. 1288 00:58:46,289 --> 00:58:56,266 DR. YU WILL PROVIDE AN IN DEPTH 1289 00:58:56,332 --> 00:58:58,268 LOOK AT THE PARENTS'S ROLE. 1290 00:58:58,334 --> 00:59:00,770 I'D LIKE TO SHARE A PHOTO SHARED 1291 00:59:00,837 --> 00:59:04,374 WITH ME ON PARENT AND SIBLING 1292 00:59:04,440 --> 00:59:05,742 PERSPECTIVES ON FAMILY 1293 00:59:05,808 --> 00:59:06,142 COMMUNICATION. 1294 00:59:06,209 --> 00:59:07,310 WHEN ASKED WHAT WAS IMPORTANT TO 1295 00:59:07,377 --> 00:59:09,479 TALK ABOUT IN DAILY LIFE ONE MOM 1296 00:59:09,545 --> 00:59:12,882 SHARED, IT CAN ALL BE SO MUCH 1297 00:59:12,949 --> 00:59:13,149 SOMETIMES. 1298 00:59:13,216 --> 00:59:15,251 THERE'S ALL THE LITTLE PIECES TO 1299 00:59:15,318 --> 00:59:17,987 MANAGE AND THEY GET TO BE SO 1300 00:59:18,054 --> 00:59:19,989 MUCH AND THEN THINGS FEEL LIKE 1301 00:59:20,056 --> 00:59:21,291 THEY START TO CRACK AND YOU CAN 1302 00:59:21,357 --> 00:59:28,598 SEE THAT ILL STRAIGH-- ILLUSTRA 1303 00:59:28,665 --> 00:59:30,800 THE SMALL THINGS WITH THE CRACK 1304 00:59:30,867 --> 00:59:31,701 ON IT. 1305 00:59:31,768 --> 00:59:34,437 THERE'S A RICH EVIDENCE BASE OF 1306 00:59:34,504 --> 00:59:40,843 PARENTS' OVER ALL EXPERIENCES IN 1307 00:59:40,910 --> 00:59:43,179 CARING FOR A CHILD WITH ILLNESS 1308 00:59:43,246 --> 00:59:46,349 AND THIS IS CONCEPTUALIZED WITH 1309 00:59:46,416 --> 00:59:48,184 BEING A LOVING PARENT AND 1310 00:59:48,251 --> 00:59:50,820 INTENSE PARENTING OR PARENTING 1311 00:59:50,887 --> 00:59:52,221 CONCEPTUALIZED AS THE ORDINARY 1312 00:59:52,288 --> 00:59:55,258 WORK IN THE CONTEXT OF THE 1313 00:59:55,325 --> 00:59:56,492 EXTRAORDINARY. 1314 00:59:56,559 --> 00:59:58,094 OUR NEXT WAVE OF PEDIATRIC 1315 00:59:58,161 --> 00:59:58,795 PALLIATIVE CARE RESEARCH CAN 1316 00:59:58,861 --> 01:00:02,799 FOCUS ON WHAT TO DO ABOUT THE 1317 01:00:02,865 --> 01:00:04,133 IMPACT. 1318 01:00:04,200 --> 01:00:10,773 WITNESSING A CHILD SUFFERING CAN 1319 01:00:10,840 --> 01:00:13,176 INSTIGATE PARENTAL STRESS AND 1320 01:00:13,242 --> 01:00:13,810 POWERLESSNESS AND PARENTS 1321 01:00:13,876 --> 01:00:14,811 EXPERIENCE DISTRESS WHEN THEY 1322 01:00:14,877 --> 01:00:16,980 ASK THE IMPACT AND DISRUPTION TO 1323 01:00:17,046 --> 01:00:19,849 THE FAMILY UNIT. 1324 01:00:19,916 --> 01:00:20,917 PARENTS DERIVE COMFORT FROM 1325 01:00:20,984 --> 01:00:25,154 BEING IN PHYSICAL AND EMOTIONAL 1326 01:00:25,221 --> 01:00:27,857 PROXIMITY TO ALL THEIR CHILDREN. 1327 01:00:27,924 --> 01:00:28,591 SMALL SUFFERING IS DESCRIBED AS 1328 01:00:28,658 --> 01:00:29,892 THE EVERYDAY EVENTS AND DECISION 1329 01:00:29,959 --> 01:00:31,427 POINTS OF ILLNESS MANAGEMENT AND 1330 01:00:31,494 --> 01:00:33,997 FAMILY LIFE THAT CAN BRING ABOUT 1331 01:00:34,063 --> 01:00:34,263 DISTRESS. 1332 01:00:34,330 --> 01:00:38,701 SMALL SUFFERING IS A HELPFUL WAY 1333 01:00:38,768 --> 01:00:40,203 TO UNDERSTAND THE LOGISTIC 1334 01:00:40,269 --> 01:00:42,005 CHALLENGES, HURDLES AND TIME 1335 01:00:42,071 --> 01:00:42,905 TASKS PARENTS CONTEND WITH AS 1336 01:00:42,972 --> 01:00:44,941 WELL AS THE PAIN FROM DAY IN AND 1337 01:00:45,008 --> 01:00:46,342 DAY OUT DECISIONS THAT PARENTS 1338 01:00:46,409 --> 01:00:48,878 HAVE TO CONTENT WITH SUCH AS NOT 1339 01:00:48,945 --> 01:00:52,215 BEING ABLE TO ATTEND ONE CHILD'S 1340 01:00:52,281 --> 01:00:53,216 SPORTING EVENT BECAUSE OF 1341 01:00:53,282 --> 01:00:54,951 CAREGIVING NEEDS OR HAVING TO 1342 01:00:55,018 --> 01:00:58,488 LEAVE THE BEDSIDE OF A 1343 01:00:58,554 --> 01:00:59,722 HOSPITALIZED CHILD TO GO TO WORK 1344 01:00:59,789 --> 01:01:02,792 OR CARE FOR SIBLINGS AT HOME. 1345 01:01:02,859 --> 01:01:03,760 IMPORTANT TO CONSIDER MOVING 1346 01:01:03,826 --> 01:01:06,796 FORWARD IS THE SPIRITUAL AND 1347 01:01:06,863 --> 01:01:10,199 EXISTENTIAL IMPACTS OF CARING 1348 01:01:10,266 --> 01:01:14,303 FOR A SERIOUSLY ILL CHILD. 1349 01:01:14,370 --> 01:01:15,371 SUCH DISTRESS CAN CONTINUE IN 1350 01:01:15,438 --> 01:01:18,207 THE DIAGNOSTIC ODYSSEY AND 1351 01:01:18,274 --> 01:01:21,310 CONTINUE THROUGH BEREAVEMENT 1352 01:01:21,377 --> 01:01:22,879 PARENTS MAY EXPERIENCE 1353 01:01:22,945 --> 01:01:24,380 POWERLESSNESS, DREAD, LOSS OF 1354 01:01:24,447 --> 01:01:27,450 CONTROL OR MORAL DISTRESS. 1355 01:01:27,517 --> 01:01:31,487 I'LL TURN THE FLOOR OVER TO 1356 01:01:31,554 --> 01:01:32,121 JENNIER. 1357 01:01:32,188 --> 01:01:34,090 >> I WANT TO SAY THANK YOU FOR 1358 01:01:34,157 --> 01:01:35,525 ALLOWING ME TO PRESENT TODAY. 1359 01:01:35,591 --> 01:01:38,561 I DO REALLY FEEL LIKE I'M IN A 1360 01:01:38,628 --> 01:01:40,229 ROOM OF WHO'S-WHO. 1361 01:01:40,296 --> 01:01:42,799 AT CPN WE READ ALL OF YOUR 1362 01:01:42,865 --> 01:01:45,268 PAPERS WITH GREAT INTEREST AND I 1363 01:01:45,334 --> 01:01:46,769 CERTAINLY HAVE LEARNED A LOT 1364 01:01:46,836 --> 01:01:48,237 DURING MY TIME BUT I'M HERE 1365 01:01:48,304 --> 01:01:51,841 TODAY TO REALLY SPEAK TO YOU AS 1366 01:01:51,908 --> 01:01:53,609 THE PARENT OF THREE. 1367 01:01:53,676 --> 01:01:55,678 THESE ARE MY THREE CHILDREN. 1368 01:01:55,745 --> 01:01:57,046 BENJAMIN WOULD BE ON THE SCREEN 1369 01:01:57,113 --> 01:01:59,882 ON THE LEFT AND MY DAUGHTER 1370 01:01:59,949 --> 01:02:01,851 ISABEL IN THE MIDDLE AND OLDEST 1371 01:02:01,918 --> 01:02:02,852 SON NOAH ON THE RIGHT. 1372 01:02:02,919 --> 01:02:06,155 AS WE HEARD TODAY AND AS KIM 1373 01:02:06,222 --> 01:02:07,223 SPOKE ABOUT WE KNOW PARENTS WANT 1374 01:02:07,290 --> 01:02:09,225 TO FEEL THEY'VE BEEN A GOOD 1375 01:02:09,292 --> 01:02:11,427 PARENT TO ALL THEIR CHILDREN. 1376 01:02:11,494 --> 01:02:14,030 AND YOU KNOW AND YOU ALL KNOW 1377 01:02:14,097 --> 01:02:15,431 THAT DEFINITION BECOMES 1378 01:02:15,498 --> 01:02:18,835 PARTICULARLY HARD WHEN HAVE YOU 1379 01:02:18,901 --> 01:02:19,836 A MEDICALLY COMPLEX CHILD 1380 01:02:19,902 --> 01:02:22,705 BECAUSE THERE IS NO LANDSCAPE TO 1381 01:02:22,772 --> 01:02:23,940 UNDERSTAND THAT THAT IS 1382 01:02:24,006 --> 01:02:24,240 PREDICTABLE. 1383 01:02:24,307 --> 01:02:25,875 WHAT I WANTED TO SPEAK TO YOU 1384 01:02:25,942 --> 01:02:27,577 MOSTLY ABOUT TODAY IS HOW 1385 01:02:27,643 --> 01:02:30,613 DIFFICULT AND HOW TRUE THAT IS 1386 01:02:30,680 --> 01:02:35,518 FOR THE WELL CHILDREN, FOR THE 1387 01:02:35,585 --> 01:02:36,018 SIBL 1388 01:02:36,085 --> 01:02:36,285 SIBLINGS. 1389 01:02:36,352 --> 01:02:37,520 THERE'S NO WHAT TO EXPECT WHEN 1390 01:02:37,587 --> 01:02:39,455 YOU PARENT THE SIBLINGS OF A 1391 01:02:39,522 --> 01:02:42,024 CHILD WITH MEDICAL COMPLEXITY. 1392 01:02:42,091 --> 01:02:44,660 AND THERE'S LITTLE GUIDANCE ON 1393 01:02:44,727 --> 01:02:46,195 WHERE TO TURN TO FIND THE HELP 1394 01:02:46,262 --> 01:02:47,130 YOU NEED. 1395 01:02:47,196 --> 01:02:49,665 MANY PARENTS AT CPN TELL US THEY 1396 01:02:49,732 --> 01:02:50,800 TRY TO LEAN INTO THEIR 1397 01:02:50,867 --> 01:02:52,602 PEDIATRICIAN TO GET THE GUIDANCE 1398 01:02:52,668 --> 01:02:54,904 FOR THEIR WELL CHILDREN BUT 1399 01:02:54,971 --> 01:02:57,373 REALIZE OVER TIME MANY 1400 01:02:57,440 --> 01:02:58,474 PEDIATRICIANS SIMPLY DON'T HAVE 1401 01:02:58,541 --> 01:03:00,243 THE EXPERIENCE TO PROVIDE THE 1402 01:03:00,309 --> 01:03:01,711 LEVEL OF GUIDANCE THEY'RE 1403 01:03:01,777 --> 01:03:03,913 SEEKING EVEN AS THEY ARE THE 1404 01:03:03,980 --> 01:03:06,782 CONSISTENT MEDICAL SUPPORT FOR A 1405 01:03:06,849 --> 01:03:09,752 FAMILY. 1406 01:03:09,819 --> 01:03:11,487 IN MY OWN PERSONAL EXPERIENCE 1407 01:03:11,554 --> 01:03:15,091 INTRINSICALLY I WANTED NOAH AND 1408 01:03:15,158 --> 01:03:17,160 ISABELL TO FEEL WHAT WAS 1409 01:03:17,226 --> 01:03:18,361 HAPPENING TO THEIR BROTHER WAS 1410 01:03:18,427 --> 01:03:19,962 HAPPENING WITH THEM NOT TO THEM. 1411 01:03:20,029 --> 01:03:21,964 THOSE ARE TWO SMALL WORDS BUT 1412 01:03:22,031 --> 01:03:25,201 MAKE A SIGNIFICANT DIFFERENCE IN 1413 01:03:25,268 --> 01:03:26,802 THE WAY THE FAMILY DYNAMIC 1414 01:03:26,869 --> 01:03:30,373 HAPPENS. 1415 01:03:30,439 --> 01:03:31,641 HOW TO ENSURE HOW THEY FELT 1416 01:03:31,707 --> 01:03:33,476 THINGS WERE HAPPENING WITH THEM 1417 01:03:33,543 --> 01:03:35,178 AND NOT TO THEM WASN'T ALWAYS 1418 01:03:35,244 --> 01:03:37,980 CLEAR AS THE PARENT AND OFTEN 1419 01:03:38,047 --> 01:03:38,681 CAUSED ME TO EXTREME DISTRESS 1420 01:03:38,748 --> 01:03:42,785 AND I'D LIKE TO SHARE WITH YOU 1421 01:03:42,852 --> 01:03:44,086 ONE EXAMPLE OF THAT. 1422 01:03:44,153 --> 01:03:46,656 THIS WORRY OF HOW TO INCLUDE MY 1423 01:03:46,722 --> 01:03:48,357 OTHER TWO CHILDREN BECAME 1424 01:03:48,424 --> 01:03:52,195 INTENSE WHEN BEN AND HIS TEEN 1425 01:03:52,261 --> 01:03:54,063 YEARS AND PROGRESSED IN HIS 1426 01:03:54,130 --> 01:03:55,898 DISORDER AT THIS POINT DEVELOPED 1427 01:03:55,965 --> 01:03:58,668 A 70% CURVE OF HIS SPINE. 1428 01:03:58,734 --> 01:04:01,137 WE WERE FACED WITH THE DECISION 1429 01:04:01,204 --> 01:04:03,839 WHETHER OR NOT TO FUSE HIS 1430 01:04:03,906 --> 01:04:04,040 SPINE. 1431 01:04:04,106 --> 01:04:07,610 BY THEN I HAD BECOME A FAIRLY 1432 01:04:07,677 --> 01:04:08,611 COMPETENT MEDICAL DECISION 1433 01:04:08,678 --> 01:04:09,145 MAKER. 1434 01:04:09,212 --> 01:04:10,846 WE LIVE IN THE BOSTON AREA. 1435 01:04:10,913 --> 01:04:14,383 BOTH MY HUSBAND AND I ARE WELL 1436 01:04:14,450 --> 01:04:14,684 EDUCATED. 1437 01:04:14,750 --> 01:04:16,118 WE UNDERSTOOD THE DISEASE 1438 01:04:16,185 --> 01:04:18,521 TRAJECTORY VERY WELL AND WERE 1439 01:04:18,588 --> 01:04:19,989 VERY KNOWLEDGEABLE ABOUT EVEN 1440 01:04:20,056 --> 01:04:21,057 THE RESEARCH SCIENCE COMING DOWN 1441 01:04:21,123 --> 01:04:21,557 THE PATH. 1442 01:04:21,624 --> 01:04:26,229 I HAD DEVELOPED A SENSE I WOULD 1443 01:04:26,295 --> 01:04:28,030 COULD BE A CONFIDENT DECISION 1444 01:04:28,097 --> 01:04:30,766 MAKER WHEN IT CAME TO THE 1445 01:04:30,833 --> 01:04:34,203 MEDICAL DECISIONS FOR MY SON. 1446 01:04:34,270 --> 01:04:38,808 WHAT I FELT INCOMPETENT IN WAS 1447 01:04:38,874 --> 01:04:44,247 MY ABILITY TO PARENT TO LET THE 1448 01:04:44,313 --> 01:04:44,981 SIBLINGS KNOW WHETHER MY 1449 01:04:45,047 --> 01:04:46,182 DECISION WAS MADE WITH THEM. 1450 01:04:46,249 --> 01:04:47,783 THE SURGERY HAD THE POTENTIAL TO 1451 01:04:47,850 --> 01:04:49,952 CHANGE OUR LIVES IN A DRASTIC 1452 01:04:50,019 --> 01:04:50,119 WAY. 1453 01:04:50,186 --> 01:04:53,122 MY SON DID NOT HAVE A FEEDING 1454 01:04:53,189 --> 01:04:54,824 TUBE AND WOULD MEAN IT HE WOULD 1455 01:04:54,890 --> 01:04:56,025 HAVE TO HAVE ONE IN ORDER TO 1456 01:04:56,092 --> 01:04:57,426 HAVE THE SURGERY. 1457 01:04:57,493 --> 01:05:01,197 IT MAY MEAN AT THIS POINT IN HIS 1458 01:05:01,264 --> 01:05:07,270 DISEASE HE COULD END UP IN A 1459 01:05:07,336 --> 01:05:11,941 TRACHEOSTOMY AND CHANGE OUR HOME 1460 01:05:12,008 --> 01:05:13,509 AND THE CHANCE HE WOULD NOT BE 1461 01:05:13,576 --> 01:05:14,877 ABLE TO SURVIVE THE SURGERY. 1462 01:05:14,944 --> 01:05:17,747 BOTH IN THEIR TEENS, I KNEW I 1463 01:05:17,813 --> 01:05:19,815 WANTED TO FIND A WAY TO MAKE 1464 01:05:19,882 --> 01:05:22,685 THIS DECISION THAT INCLUDED MY 1465 01:05:22,752 --> 01:05:23,352 WELL CHILDREN BUT DIDN'T MAKE 1466 01:05:23,419 --> 01:05:25,855 THEM BURDENED WITH THE THINGS I 1467 01:05:25,921 --> 01:05:27,623 KNEW THAT MIGHT COME WHICH WAS 1468 01:05:27,690 --> 01:05:30,793 NOW I KNOW GUILT AND REGRET. 1469 01:05:30,860 --> 01:05:32,795 I JUST DIDN'T KNOW HOW AND WENT 1470 01:05:32,862 --> 01:05:36,232 TO MY G.I. DOCTOR TO DISCUSS THE 1471 01:05:36,299 --> 01:05:40,803 POTENTIAL OF A FEEDING TUBE AND 1472 01:05:40,870 --> 01:05:43,239 MENTIONED THIS INTENSE DECISION 1473 01:05:43,306 --> 01:05:44,974 AND AT THAT POINT BEN WAS ABOUT 1474 01:05:45,041 --> 01:05:48,577 14 A REFERRAL TO PEDIATRIC 1475 01:05:48,644 --> 01:05:49,945 PALLIATIVE CARE WAS MADE FOR MY 1476 01:05:50,012 --> 01:05:50,179 FAMILY. 1477 01:05:50,246 --> 01:05:51,847 THIS ALONE IS REMARKABLE BUT I'M 1478 01:05:51,914 --> 01:05:52,448 NOT HERE TO TALK ABOUT THAT 1479 01:05:52,515 --> 01:05:58,087 TODAY. 1480 01:05:58,154 --> 01:06:01,891 IT MADE A BIG DIFFERENCE IN OUR 1481 01:06:01,957 --> 01:06:02,091 LIVES. 1482 01:06:02,158 --> 01:06:08,064 I REMEMBER WHEN PAT O'MALLEY OUR 1483 01:06:08,130 --> 01:06:11,267 PEDIATRIC PALLIATIVE CARE 1484 01:06:11,334 --> 01:06:14,904 PROVIDER CAME TO OUR HOUSE AND 1485 01:06:14,970 --> 01:06:18,174 WE TALKED ABOUT HOW TO INCLUDE 1486 01:06:18,240 --> 01:06:21,377 HIS SIBLINGS IN THE LANGUAGE AND 1487 01:06:21,444 --> 01:06:22,712 HELP THE FAMILY FEEL THE 1488 01:06:22,778 --> 01:06:24,814 DECISION WAS MADE AS A UNIT. 1489 01:06:24,880 --> 01:06:26,182 IT WASN'T UNTIL I HAD ALL THE 1490 01:06:26,248 --> 01:06:36,859 WORDS IN CHECK MY HUS BEHIND -- 1491 01:06:40,029 --> 01:06:43,332 HUSBAND AND I BROUGHT OUR 1492 01:06:43,399 --> 01:06:47,737 ATTENTION TO THE SIBLINGS AND A 1493 01:06:47,803 --> 01:06:49,405 STUDY REVEALED PARENTS WITH 1494 01:06:49,472 --> 01:06:52,208 OTHER CHILDREN RATE THE DOMAIN 1495 01:06:52,274 --> 01:06:54,744 PHYSICAL AND EMOTIONAL CARE AS A 1496 01:06:54,810 --> 01:06:56,078 HIGH PRIORITY. 1497 01:06:56,145 --> 01:06:58,314 TWICE AS IMPORTANT AS FAMILIES 1498 01:06:58,381 --> 01:06:59,515 WITHOUT OTHER CHILDREN BUT FIFTH 1499 01:06:59,582 --> 01:07:01,217 IN OVER ALL PRIORITY. 1500 01:07:01,283 --> 01:07:02,785 I DON'T THINK THIS -- THIS 1501 01:07:02,852 --> 01:07:04,387 DOESN'T SURPRISE ME AND SURE IT 1502 01:07:04,453 --> 01:07:05,788 DOESN'T SURPRISE ANY OF YOU BUT 1503 01:07:05,855 --> 01:07:10,426 WHEN WE LOOK AT CARRYING FOR THE 1504 01:07:10,493 --> 01:07:12,094 SERIOUSLY ILL CHILD, WE CAN'T 1505 01:07:12,161 --> 01:07:13,496 NOT LOOK AT CARING FOR THE 1506 01:07:13,562 --> 01:07:14,497 MEMBERS AROUND THEM. 1507 01:07:14,563 --> 01:07:16,198 THE PARENTS AND INCLUDING THE 1508 01:07:16,265 --> 01:07:26,409 SIBLING. 1509 01:07:32,782 --> 01:07:35,751 >> THINKING ABOUT THAT AND 1510 01:07:35,818 --> 01:07:37,019 FOCUSSING ON THE IMPACT OF 1511 01:07:37,086 --> 01:07:40,990 SERIOUS PEDIATRIC CARE ON 1512 01:07:41,056 --> 01:07:41,791 SIBLINGS, REMEMBER SIBLINGS ARE 1513 01:07:41,857 --> 01:07:43,426 CHILDREN TOO AND WE NEED TO TAKE 1514 01:07:43,492 --> 01:07:43,959 THEIR NEEDS AND CONCERNS 1515 01:07:44,026 --> 01:07:47,663 SERIOUSLY. 1516 01:07:47,730 --> 01:07:49,598 I'D LIKE TO START BY SHARING A 1517 01:07:49,665 --> 01:07:51,534 PHOTO OFFERED BY A SIBLING IN 1518 01:07:51,600 --> 01:07:52,701 THE SAME PHOTO VOICE PROJECT 1519 01:07:52,768 --> 01:07:54,503 WHEN I ASKED WHAT WAS HARD TO 1520 01:07:54,570 --> 01:07:57,106 TALK ABOUT RELATED TO HER 1521 01:07:57,173 --> 01:07:58,507 SIBLING'S ILLNESS SHE SAID I 1522 01:07:58,574 --> 01:08:01,110 TOOK A PICTURE OF MY LACROSSE 1523 01:08:01,177 --> 01:08:02,678 CLEATS BECAUSE I'M AN ATHLETE. 1524 01:08:02,745 --> 01:08:03,412 SOMETIMES I WANT TO BE 1525 01:08:03,479 --> 01:08:06,782 RECOGNIZED AS MYSELF AND NOT THE 1526 01:08:06,849 --> 01:08:09,385 SISTER OF. 1527 01:08:09,452 --> 01:08:10,553 SIBLINGS ARE POWERFUL AND OFFER 1528 01:08:10,619 --> 01:08:13,122 WINDOWS INTO FAMILY HEALTH. 1529 01:08:13,189 --> 01:08:15,925 THEY SHAPE OTHER SIBLING'S 1530 01:08:15,991 --> 01:08:18,994 BEHAVIORS DURING EVERY DAY 1531 01:08:19,061 --> 01:08:20,763 INTERACTIONS, SERVE AS SOCIAL 1532 01:08:20,830 --> 01:08:24,667 SUPPORT AND ACT AS ROLE MODELS. 1533 01:08:24,733 --> 01:08:27,336 LESS ATTENTION HAS BEEN PAID TO 1534 01:08:27,403 --> 01:08:30,239 THE WAY SIBLINGS ACT AS THE 1535 01:08:30,306 --> 01:08:31,307 BUILDING BLOCKS OF THE FAMILY 1536 01:08:31,373 --> 01:08:34,210 STRUCTURE AND THROUGH THE RIPPLE 1537 01:08:34,276 --> 01:08:35,711 AFFECTS OF THEIR BEHAVIOR 1538 01:08:35,778 --> 01:08:41,650 THROUGH THE FAMILY SYSTEM. 1539 01:08:41,717 --> 01:08:44,920 SIBLINGS OF THOSE WITH SERIOUS 1540 01:08:44,987 --> 01:08:46,388 ILLNESS FACE CHALLENGES AND 1541 01:08:46,455 --> 01:08:49,225 THERE'S BEEN IMPORTANT WORK ALSO 1542 01:08:49,291 --> 01:08:52,761 DONE IN SIBLINGS OF THOSE WITH 1543 01:08:52,828 --> 01:08:53,896 RARE DISEASE. 1544 01:08:53,963 --> 01:08:57,066 SIBLINGS OF KIDS WITH RARE 1545 01:08:57,132 --> 01:08:58,334 DISEASE REPORT WORSE QUALITY OF 1546 01:08:58,400 --> 01:09:05,107 LIFE AND DISPARATE OUTCOMES AND 1547 01:09:05,174 --> 01:09:08,244 EXPERIENCE ANXIETY, DEPRESSION, 1548 01:09:08,310 --> 01:09:10,646 SUBSTANCE USE, ACADEMICS 1549 01:09:10,713 --> 01:09:14,149 CHALLENGES AND EMOTIONAL 1550 01:09:14,216 --> 01:09:14,416 DISTRESS. 1551 01:09:14,483 --> 01:09:18,787 25% MEET CRITERIA FOR PTSD AND 1552 01:09:18,854 --> 01:09:23,959 OVER HALF REPORT MODERATE TO 1553 01:09:24,026 --> 01:09:26,762 SEVERE DISTRESS AND EXPERIENCE 1554 01:09:26,829 --> 01:09:30,799 ANGER, FEAR, UNCERTAINTY AN 1555 01:09:30,866 --> 01:09:34,303 INCREASE WITH THE INVASIVENESS 1556 01:09:34,370 --> 01:09:36,972 OF EVERYDAY MANAGEMENT AND THE 1557 01:09:37,039 --> 01:09:38,774 GREATER LIFE THREAT TO THE 1558 01:09:38,841 --> 01:09:40,342 SERIOUSLY ILL CHILD. 1559 01:09:40,409 --> 01:09:47,716 THEY ALSO RECOGNIZE MEG -- 1560 01:09:47,783 --> 01:09:49,685 NEGATIVE PATTERNS, LAPSE OF 1561 01:09:49,752 --> 01:09:50,786 COMMUNICATION OR EXCLUSION FROM 1562 01:09:50,853 --> 01:09:53,422 DISEASE RELATED TO DISCUSSIONS. 1563 01:09:53,489 --> 01:09:55,057 YET THERE'S LIMITED 1564 01:09:55,124 --> 01:09:57,726 INTERVENTIONS THAT EXIST TO 1565 01:09:57,793 --> 01:09:59,328 SUPPORT SIBLINGS IN THOSE THAT 1566 01:09:59,395 --> 01:09:59,929 DO EXIST HAVE VARIABLE 1567 01:09:59,995 --> 01:10:05,000 EFFECTIVE. 1568 01:10:05,067 --> 01:10:07,736 -- EFFECTIVENESS. 1569 01:10:07,803 --> 01:10:09,805 THESE GAPS CAN STRAIN FAMILY 1570 01:10:09,872 --> 01:10:11,540 RELATIONSHIPS AND INCREASE 1571 01:10:11,607 --> 01:10:13,542 DISTRESS AND DIMINISH OVER ALL 1572 01:10:13,609 --> 01:10:14,877 WELL BEING. 1573 01:10:14,944 --> 01:10:17,546 TAKEN TOGETHER WE SEE SIBLINGS 1574 01:10:17,613 --> 01:10:18,714 EXPERIENCE INTRAPERSONAL AFFECTS 1575 01:10:18,781 --> 01:10:21,550 WHEN THEY'RE BROTHER OR SISTER 1576 01:10:21,617 --> 01:10:22,785 IS SERIOUSLY ILL. 1577 01:10:22,851 --> 01:10:23,519 UNDERSTANDING WAYS TO PROMOTE 1578 01:10:23,586 --> 01:10:25,721 THE HEALTH OF THE FAMILY UNIT 1579 01:10:25,788 --> 01:10:28,223 CAN HAVE CASCADING EFFECTS ON 1580 01:10:28,290 --> 01:10:37,967 SIBLING WELL BEING. 1581 01:10:38,033 --> 01:10:39,468 >> THESE QUOTES ILLUSTRATE ALL 1582 01:10:39,535 --> 01:10:42,504 OF WHAT KIM JUST SPOKE ABOUT AND 1583 01:10:42,571 --> 01:10:43,839 COLLECTIVELY REPRESENT MUCH OF 1584 01:10:43,906 --> 01:10:46,442 WHAT WE HEAR FROM PARENTS AND 1585 01:10:46,508 --> 01:10:48,811 SIBLINGS WHO CREATED TO CREATE 1586 01:10:48,877 --> 01:10:58,220 THE NETWORK IN THEM YOU'LL HEAR 1587 01:10:58,287 --> 01:11:01,123 THEMES OF PERFECTIONISM AND FEEL 1588 01:11:01,190 --> 01:11:05,427 THEY MUST COMPENSATE FOR THE 1589 01:11:05,494 --> 01:11:07,396 SPECIAL NEEDS AND SET 1590 01:11:07,463 --> 01:11:10,199 UNREALISTIC HIGH EXPECTATIONS AN 1591 01:11:10,265 --> 01:11:13,469 MANY FEAR GUILT AND WORRY ABOUT 1592 01:11:13,535 --> 01:11:15,938 ASKING THEIR OVER BURDENED 1593 01:11:16,005 --> 01:11:18,474 PARENTS FOR TIME AND ATTENTION 1594 01:11:18,540 --> 01:11:21,477 MAKING THEM FEEL LIKE THEY'RE 1595 01:11:21,543 --> 01:11:22,811 INVISIBLE AND SEVERAL SIBLINGS 1596 01:11:22,878 --> 01:11:25,147 WILL EXPRESS ANGER OVER THE 1597 01:11:25,214 --> 01:11:29,718 CHILDHOOD THINGS THEY MISS OUT 1598 01:11:29,785 --> 01:11:30,119 ON. 1599 01:11:30,185 --> 01:11:40,596 FOR ME THE QUOTE THAT 1600 01:11:40,796 --> 01:11:43,532 REVERBERATES IS IS CAYLA AND 10 1601 01:11:43,599 --> 01:11:45,434 YEARS AFTER MY SON'S DEATH THIS 1602 01:11:45,501 --> 01:11:47,803 DYNAMIC STILL AFFECTS MY FAMILY. 1603 01:11:47,870 --> 01:11:50,406 RECENTLY IN THERAPY, MY OLDEST 1604 01:11:50,472 --> 01:11:53,342 WHO JUST TURNED 30 REMARKED OUR 1605 01:11:53,409 --> 01:11:55,511 FAMILY NEVER HONED THE SKILL OF 1606 01:11:55,577 --> 01:11:58,480 DOING SOMETHING FOR FUN WITHOUT 1607 01:11:58,547 --> 01:12:01,917 WORRY OR CONSEQUENCE. 1608 01:12:01,984 --> 01:12:03,952 WE APPROACH EVERY ACTIVITY AS A 1609 01:12:04,019 --> 01:12:06,321 PROBLEM TO SOLVE WITH HIGH 1610 01:12:06,388 --> 01:12:07,289 STAKES. 1611 01:12:07,356 --> 01:12:10,025 THESE DON'T GO AWAY WHEN 1612 01:12:10,092 --> 01:12:12,995 CHILDREN OF SIBLINGS OF RARE 1613 01:12:13,062 --> 01:12:16,131 DISEASE GROW UP AND I HAVE A 1614 01:12:16,198 --> 01:12:19,034 CHILD WHO SUFFERS FROM ANXIETY 1615 01:12:19,101 --> 01:12:21,503 AND MY YOUNGEST IS AN OVER 1616 01:12:21,570 --> 01:12:21,770 ACHIEVER. 1617 01:12:21,837 --> 01:12:24,807 IF SHE THROWS A DINNER PARTY IT 1618 01:12:24,873 --> 01:12:27,910 LOOKS LIKE SOMETHING FROM A 1619 01:12:27,976 --> 01:12:29,878 MARTHA STEWART MAGAZINE AND I'M 1620 01:12:29,945 --> 01:12:32,981 SURE SHE COMES TO SOME OF THOSE 1621 01:12:33,048 --> 01:12:37,186 FIELD NATURALLY AS MY SON WITH 1622 01:12:37,252 --> 01:12:41,490 ANXIETY BUT I WONDER SINCE WE 1623 01:12:41,557 --> 01:12:43,358 WERE REFERRED TO PEDIATRIC 1624 01:12:43,425 --> 01:12:45,127 PALLIATIVE CARE SO LATE UP OUR 1625 01:12:45,194 --> 01:12:46,361 JOURNEY HOW MUCH THAT WOULD HAVE 1626 01:12:46,428 --> 01:12:48,964 CHANGED IF THE SUPPORT AND HELP 1627 01:12:49,031 --> 01:12:50,766 HAD COME EARLY. 1628 01:12:50,833 --> 01:12:54,770 I ALSO WANT TO POINT OUT MY WORK 1629 01:12:54,837 --> 01:12:57,039 AT COURAGEOUS PARENTS NETWORK I 1630 01:12:57,106 --> 01:12:58,774 INTERACT WITH MANY SIBLINGS MANY 1631 01:12:58,841 --> 01:13:02,778 WHO ARE ADULT. 1632 01:13:02,845 --> 01:13:06,782 I SEE THE COMMON TRAITS AND I'M 1633 01:13:06,849 --> 01:13:09,585 EXCITED TO SEE THERE'S NOW 1634 01:13:09,651 --> 01:13:10,285 INTEREST IN RESEARCHING MORE OF 1635 01:13:10,352 --> 01:13:12,654 WHAT CAN BE DONE TO SUPPORT THE 1636 01:13:12,721 --> 01:13:13,422 FAMILIES BY SUPPORTING THE 1637 01:13:13,489 --> 01:13:21,263 SIBLINGS. 1638 01:13:21,330 --> 01:13:22,598 >> THANK YOU, JENNIFER. 1639 01:13:22,664 --> 01:13:23,999 I'D LIKE TO PULL THE LENS BACK A 1640 01:13:24,066 --> 01:13:27,836 BIT TO LOOK AT THE IMPACT ON THE 1641 01:13:27,903 --> 01:13:29,071 FAMILY UNIT. 1642 01:13:29,138 --> 01:13:30,873 FAMILY PROCESSES SUCH AS FAMILY 1643 01:13:30,939 --> 01:13:32,407 FUNCTION, FAMILY COMMUNICATION, 1644 01:13:32,474 --> 01:13:34,343 FAMILY MANAGEMENT OF THE SERIOUS 1645 01:13:34,409 --> 01:13:38,781 ILLNESS ARE IMPORTANT TO STUDY 1646 01:13:38,847 --> 01:13:40,482 IN PEDIATRIC PALLIATIVE CARE 1647 01:13:40,549 --> 01:13:42,284 BECAUSE OF THE PROFOUND IMPACT 1648 01:13:42,351 --> 01:13:44,453 FAMILY MEMBERS HAVE ON ONE 1649 01:13:44,520 --> 01:13:44,686 ANOTHER. 1650 01:13:44,753 --> 01:13:45,854 THEY'RE IMPORTANT FOR OUR 1651 01:13:45,921 --> 01:13:48,390 RESEARCH BECAUSE THEY WILL OFTEN 1652 01:13:48,457 --> 01:13:52,194 CONTINUE BEYOND THE TIME PART OF 1653 01:13:52,261 --> 01:13:55,898 THE FAMILY'S JOURNEY AND 1654 01:13:55,964 --> 01:13:58,233 PREVENTION SAY DOWN TREATMENT 1655 01:13:58,300 --> 01:13:58,767 EFFECT. 1656 01:13:58,834 --> 01:14:01,603 THIS DESCRIBES THE 1657 01:14:01,670 --> 01:14:02,571 INTERRELATEDNESS OF PARENTS AND 1658 01:14:02,638 --> 01:14:03,205 CHILDREN. 1659 01:14:03,272 --> 01:14:06,074 FAMILY PROCESS CAN IMPACT CHILD 1660 01:14:06,141 --> 01:14:09,044 WELL BEING AND ADAPTATION. 1661 01:14:09,111 --> 01:14:11,446 THREATS TO FAMILY MEMBER'S WELL 1662 01:14:11,513 --> 01:14:14,550 BEING CAN IMPACT INDIVIDUALS AND 1663 01:14:14,616 --> 01:14:16,218 OUTCOMES OF THE UNIT. 1664 01:14:16,285 --> 01:14:19,354 SIBLINGS AND PARENTS CAN 1665 01:14:19,421 --> 01:14:22,224 CONTRIBUTE TO DISPARATE OUTCOME 1666 01:14:22,291 --> 01:14:25,761 COMPARED TO UNAFFECTED FAMILIES. 1667 01:14:25,828 --> 01:14:27,830 IF PARENTS ARE STRESSED ABOUT 1668 01:14:27,896 --> 01:14:30,699 FINANCES IT CAN REVERBERATE AND 1669 01:14:30,766 --> 01:14:32,100 IMPACT RELATIONSHIP WITH THEIR 1670 01:14:32,167 --> 01:14:34,436 PARTNER AND ABILITY TO ENGAGE OR 1671 01:14:34,503 --> 01:14:38,307 ENERGY TO ENGAGE WITH THE 1672 01:14:38,373 --> 01:14:38,841 SIBLINGS. 1673 01:14:38,907 --> 01:14:40,209 PARENTS RECOGNIZE THIS AND WANT 1674 01:14:40,275 --> 01:14:43,912 SUPPORT. 1675 01:14:43,979 --> 01:14:45,214 WE ALSO RECOGNIZE WHAT PARENTS 1676 01:14:45,280 --> 01:14:47,449 WANT TO DO FOR ALL THEIR 1677 01:14:47,516 --> 01:14:49,918 CHILDREN MAY NOT MATCH WHAT 1678 01:14:49,985 --> 01:14:53,355 THEY'RE ABLE TO DO AND THIS CAN 1679 01:14:53,422 --> 01:14:55,057 CAUSE DISTRESS. 1680 01:14:55,123 --> 01:14:57,860 PALLIATIVE CARE TO DATE LESS 1681 01:14:57,926 --> 01:14:59,061 OFTEN EXPLORED FAMILY PROCESSES 1682 01:14:59,127 --> 01:15:01,430 AND WE NEED THIS TO DEVELOP 1683 01:15:01,496 --> 01:15:02,464 FAMILY-FOCUSSED INTERVENTIONS 1684 01:15:02,531 --> 01:15:04,199 AND SUPPORTIVE POLICIES TO 1685 01:15:04,266 --> 01:15:05,500 IMPROVE FAMILY HEALTH. 1686 01:15:05,567 --> 01:15:06,935 SUCH WORK WOULD PROVIDE AN 1687 01:15:07,002 --> 01:15:09,071 OPPORTUNITY TO BUILD ON A 1688 01:15:09,137 --> 01:15:10,205 FAMILY'S STRENGTHS. 1689 01:15:10,272 --> 01:15:12,107 I HAVE THE GOOD FORTUNE TO BE 1690 01:15:12,174 --> 01:15:16,011 PART OF A SCOPING REVIEW TEAM TO 1691 01:15:16,078 --> 01:15:24,186 LOOK AT THE PEED -- PEDIATRIC 1692 01:15:24,253 --> 01:15:25,053 PALLIATIVE CARE TO LOOK AT HOW 1693 01:15:25,120 --> 01:15:26,088 THE WAS BEING DONE. 1694 01:15:26,154 --> 01:15:29,258 WE FOUND FAMILY WAS NOT 1695 01:15:29,324 --> 01:15:33,228 SYSTEMATICALLY DEFINED BUT 1696 01:15:33,295 --> 01:15:34,663 INCLUDED FAMILY EXPERIENCE FROM 1697 01:15:34,730 --> 01:15:37,099 THE PARENT POINT OF VIEW, LESS 1698 01:15:37,165 --> 01:15:40,903 OFTEN THE SERIOUSLY ILL CHILD OR 1699 01:15:40,969 --> 01:15:41,136 SIBLING. 1700 01:15:41,203 --> 01:15:42,771 AND THIS WAS FOCUSSED ON THE 1701 01:15:42,838 --> 01:15:44,873 EXPERIENCE OR NEGATIVE-POSITIVE 1702 01:15:44,940 --> 01:15:46,808 PSYCHOSOCIAL OUTCOMES AND ONLY 1703 01:15:46,875 --> 01:15:48,877 15% OF THE ARTICLES FOCUSSED ON 1704 01:15:48,944 --> 01:15:49,845 FAMILY PROCESSES. 1705 01:15:49,912 --> 01:15:54,783 EVEN LESS ON THE IMPACT TO OF 1706 01:15:54,850 --> 01:15:59,855 SOCIAL DETERMINATES OF HEALTH. 1707 01:15:59,922 --> 01:16:10,432 I'LL TURN IT OVER TO JENNIFER. 1708 01:16:11,700 --> 01:16:13,535 >> WHEN PARENTS COME TO AN 1709 01:16:13,602 --> 01:16:15,103 APPOINTMENT FOR THEIR MEDICALLY 1710 01:16:15,170 --> 01:16:16,772 COMPLEX KID THEY COME WITH THE 1711 01:16:16,838 --> 01:16:21,043 WORRIES, FAMILY DYNAMICS, LIFE 1712 01:16:21,109 --> 01:16:21,576 REALITIES. 1713 01:16:21,643 --> 01:16:24,346 AS KIM'S COG IMAGE IL STRAITED 1714 01:16:24,413 --> 01:16:26,581 YOU CAN'T SEPARATE THE PARTS 1715 01:16:26,648 --> 01:16:27,482 FROM THE WHOLE. 1716 01:16:27,549 --> 01:16:31,386 SO CARING FOR THE SERIOUSLY ILL 1717 01:16:31,453 --> 01:16:32,688 CHILD MEANS CARING FOR THE 1718 01:16:32,754 --> 01:16:34,289 PARENT AND ANYONE ELSE WHO LIVES 1719 01:16:34,356 --> 01:16:38,827 IN THE FAMILY. 1720 01:16:38,894 --> 01:16:41,663 AND THIS LEADS TO A 1721 01:16:41,730 --> 01:16:42,230 DIFFERENTIATION IN THE LIFE 1722 01:16:42,297 --> 01:16:42,764 STYLES THAT NEEDS TO BE 1723 01:16:42,831 --> 01:16:44,933 ACKNOWLEDGED IN OUR CARE. 1724 01:16:45,000 --> 01:16:46,335 TENDING TO THE ILL CHILD MEANS 1725 01:16:46,401 --> 01:16:48,503 SEEING AND TENDING TO EACH 1726 01:16:48,570 --> 01:16:50,906 MEMBER OF THE FAMILY. 1727 01:16:50,973 --> 01:16:53,775 THIS SLIDE REPRESENTS RESPONSES 1728 01:16:53,842 --> 01:16:55,677 OF PARENTS GAVE WHEN ASKED TO 1729 01:16:55,744 --> 01:16:58,013 STATE IN ONE WORD A CONCERN OR 1730 01:16:58,080 --> 01:17:00,015 OBSERVATION THEY HAD ABOUT THEIR 1731 01:17:00,082 --> 01:17:04,186 WELL CHILDREN, THE SIB LINGDZ. 1732 01:17:04,252 --> 01:17:04,987 -- SIBLINGS. 1733 01:17:05,053 --> 01:17:07,289 LATER IN A PANEL OF SIBLINGS, I 1734 01:17:07,356 --> 01:17:09,725 ASKED EACH SIBLINGS TO CHOOSE 1735 01:17:09,791 --> 01:17:12,728 AND RESPOND TO A WORD IN THIS 1736 01:17:12,794 --> 01:17:12,928 LIST. 1737 01:17:12,995 --> 01:17:16,531 THE WORDS THEY CHOSE INCLUDED 1738 01:17:16,598 --> 01:17:18,400 NEGLECT, PERFECTIONISM, 1739 01:17:18,467 --> 01:17:18,900 LONELINESS, ANXIETY AND 1740 01:17:18,967 --> 01:17:29,144 PRESSURE. 1741 01:17:31,113 --> 01:17:35,617 THEY ALSO CHOSE RESILIENCE AND 1742 01:17:35,684 --> 01:17:36,852 EMPATHY AND THESE ARE THE THINGS 1743 01:17:36,918 --> 01:17:38,787 THEY HAVE GAINED EVEN AS WE 1744 01:17:38,854 --> 01:17:40,055 WORRY ABOUT THE OTHER THINGS 1745 01:17:40,122 --> 01:17:42,791 THAT ARE PROBABLY FOLLOWING THEM 1746 01:17:42,858 --> 01:17:45,327 ALONG THEIR PATH. 1747 01:17:45,394 --> 01:17:49,331 I KNOW THE FAMILIES OF THE 1748 01:17:49,398 --> 01:17:50,565 PARENTS OF THE PANEL WERE 1749 01:17:50,632 --> 01:17:53,502 SUPPORTED BY PALLIATIVE CARE AND 1750 01:17:53,568 --> 01:17:54,369 EACH SIBLINGS COMMENT ON THE 1751 01:17:54,436 --> 01:17:55,003 DIFFERENCE THE SUPPORT MADE IN 1752 01:17:55,070 --> 01:17:58,240 THE FAMILY. 1753 01:17:58,306 --> 01:18:05,814 AND THREE OF THE FOUR NOTED HOW 1754 01:18:05,881 --> 01:18:08,116 MUCH SUPPORT BEFORE TALKING 1755 01:18:08,183 --> 01:18:10,252 ABOUT THE SUPPORT BY THE SIBLING 1756 01:18:10,318 --> 01:18:11,420 AND THAT'S TELLING. 1757 01:18:11,486 --> 01:18:14,423 MY OWN CHILDREN HAVE REMARKED 1758 01:18:14,489 --> 01:18:18,126 HOW PAT O'MALLEY GAVE THEM 1759 01:18:18,193 --> 01:18:19,494 SUPPORT ESPECIALLY AS BEN WAS 1760 01:18:19,561 --> 01:18:19,694 DYING. 1761 01:18:19,761 --> 01:18:21,797 AND HELPED THEM FEEL AS THOUGH 1762 01:18:21,863 --> 01:18:23,965 THEY'VE BEEN A GOOD SIBLING TO 1763 01:18:24,032 --> 01:18:25,567 BEN BECAUSE THEY'RE ALSO TRYING 1764 01:18:25,634 --> 01:18:27,702 TO FIGURE THAT OUT EVEN NOW IN 1765 01:18:27,769 --> 01:18:29,438 THEIR ADULTHOOD. 1766 01:18:29,504 --> 01:18:32,574 I KNOW THE SUPPORT THEY GAVE ME 1767 01:18:32,641 --> 01:18:34,810 THOUGH IT WAS LATE HELPED MY 1768 01:18:34,876 --> 01:18:36,878 HUSBAND AND I FEEL WE'VE BEEN A 1769 01:18:36,945 --> 01:18:42,651 GOOD PARENT TO BEN AND HELPED US 1770 01:18:42,717 --> 01:18:44,319 FEEL WE'VE BEEN A BETTER PARENT 1771 01:18:44,386 --> 01:18:48,056 THAN WE MIGHT HAVE NOT BEEN TO 1772 01:18:48,123 --> 01:18:51,693 NOAH AND ISABELLE AND WE SAY AT 1773 01:18:51,760 --> 01:18:54,629 CPN THE BETTER THE BEFORE, THE 1774 01:18:54,696 --> 01:18:57,933 BETTER THE AFTER AND AS I SAID 1775 01:18:57,999 --> 01:18:59,634 BEFORE, I CAN SEE SOME OF THE 1776 01:18:59,701 --> 01:19:00,869 SAME WORDS PLAYING THEMSELVES 1777 01:19:00,936 --> 01:19:02,404 OUT IN MY ADULT CHILDREN'S 1778 01:19:02,471 --> 01:19:10,946 LIVES. 1779 01:19:11,012 --> 01:19:12,781 >> ALIGNS WELL WITH OUR NEXT 1780 01:19:12,848 --> 01:19:14,015 STEP INTO THINKING ABOUT HOW 1781 01:19:14,082 --> 01:19:16,218 FAMILY HEALTH ALIGNS WITH 1782 01:19:16,284 --> 01:19:18,887 NICHD'S RESEARCH PRIORITIES. 1783 01:19:18,954 --> 01:19:19,454 . 1784 01:19:19,521 --> 01:19:21,590 WE BELIEVE A CLEAR FOCUS AND 1785 01:19:21,656 --> 01:19:23,992 PRIORITIZATION OF FAMILY HEALTH 1786 01:19:24,059 --> 01:19:30,699 FITS WELL AND AS JENNIFER 1787 01:19:30,765 --> 01:19:33,768 MENTIONED, THE BETTER THE BEFORE 1788 01:19:33,835 --> 01:19:36,204 THE BETTER THE AFTER. 1789 01:19:36,271 --> 01:19:38,140 ATTENDING TO THE FAMILY HEALTH 1790 01:19:38,206 --> 01:19:46,781 DURING SERIOUS ILL, MAY IS HELP 1791 01:19:46,848 --> 01:19:56,224 MAY HELP SUPPORT FAMILIES. 1792 01:19:56,291 --> 01:20:00,762 SINCE MANY KIDS LEAVING WITH 1793 01:20:00,829 --> 01:20:03,365 SERIOUS ILLNESS ARE LIVING 1794 01:20:03,431 --> 01:20:04,533 LONGER NEED TO TRANSITION TO 1795 01:20:04,599 --> 01:20:05,433 HEALTH CARE. 1796 01:20:05,500 --> 01:20:07,502 WHAT ARE THE EXPERIENCES OF 1797 01:20:07,569 --> 01:20:09,271 SIBLINGS WHO IN THE MIDST OF THE 1798 01:20:09,337 --> 01:20:11,139 TRANSITION IN THE HEALTH CARE 1799 01:20:11,206 --> 01:20:11,640 SYSTEM ALSO EXPERIENCE 1800 01:20:11,706 --> 01:20:13,341 TRANSITION WITHIN THEIR FAMILIES 1801 01:20:13,408 --> 01:20:14,776 AND BECOME CAREGIVERS. 1802 01:20:14,843 --> 01:20:21,750 AND TIMELY THE PED CRITICAL CARE 1803 01:20:21,816 --> 01:20:24,286 BRANCH NOTED THE BIOETHICS 1804 01:20:24,352 --> 01:20:25,253 RELATED TO SERIOUS ILLNESS CARE 1805 01:20:25,320 --> 01:20:26,855 AND SUGGEST THE FOCUS ON 1806 01:20:26,922 --> 01:20:32,294 BIOETHICS CAN IMPROVE THE 1807 01:20:32,360 --> 01:20:34,596 THREE-FOOT RELATIONSHIP VIEW AND 1808 01:20:34,663 --> 01:20:36,631 BIRD'S EYE VIEW TO INTERROGATE 1809 01:20:36,698 --> 01:20:38,033 OUR APPROACHES TO CARE AND 1810 01:20:38,099 --> 01:20:40,435 INSTITUTIONAL MODELS OF CARE 1811 01:20:40,502 --> 01:20:43,038 PERPETUATE DISPARITY OR 1812 01:20:43,104 --> 01:20:46,441 CONTRIBUTE TO FAMILY AND CHILD 1813 01:20:46,508 --> 01:20:49,311 SUFFERING. 1814 01:20:49,377 --> 01:20:51,213 FINALLY WE'D LIKE TO WRAP UM 1815 01:20:51,279 --> 01:20:52,447 WITH RECOMMENDATION FOR THE 1816 01:20:52,514 --> 01:20:57,352 RESEARCH AGENDA. 1817 01:20:57,419 --> 01:20:58,620 WE'D LIKE TOS FOR THE 1818 01:20:58,687 --> 01:20:58,987 RESEARCH AGENDA. 1819 01:20:59,054 --> 01:21:03,058 WE'D LIKE TO WE'D LIKE TO 1820 01:21:03,124 --> 01:21:06,061 SUGGEST FAMILY HEALTH IS INCLUDE 1821 01:21:06,127 --> 01:21:07,629 IN THE STRATEGIC PLAN AND THIS 1822 01:21:07,696 --> 01:21:09,331 IS OUR CHANCE TO IMPACT SCIENCE 1823 01:21:09,397 --> 01:21:14,869 POLICY AND HAVE A CLEAR CALL AND 1824 01:21:14,936 --> 01:21:16,071 EMPHASIS ON FAMILY HEALTH. 1825 01:21:16,137 --> 01:21:18,340 WE'D LIKE TO ATTEND TO EQUITY 1826 01:21:18,406 --> 01:21:23,478 AND THE IMPACT OF SOCIAL 1827 01:21:23,545 --> 01:21:25,714 DISTANCES OF HEALTH AND THEY ARE 1828 01:21:25,780 --> 01:21:29,117 INFLUENCED BY THE SOCIAL 1829 01:21:29,184 --> 01:21:30,785 DETERMINATES OF HEALTH. 1830 01:21:30,852 --> 01:21:34,422 AND WE NEED TO ATTEND TO THE 1831 01:21:34,489 --> 01:21:35,690 STRUCTURAL FACTORS THAT IMPACT 1832 01:21:35,757 --> 01:21:37,492 EQUITABLE CARE FOR CHILDREN AND 1833 01:21:37,559 --> 01:21:39,227 THEIR FAMILY AND IMPACT THEIR 1834 01:21:39,294 --> 01:21:41,162 ABILITY TO RECEIVE SERVICES THAT 1835 01:21:41,229 --> 01:21:43,765 ENHANCE THEIR COMFORT AND WELL 1836 01:21:43,832 --> 01:21:43,965 BEING. 1837 01:21:44,032 --> 01:21:47,302 WE NEED TO ATTEND TO THE 1838 01:21:47,369 --> 01:21:49,004 INTERRELATEDNESS TO INDIVIDUAL 1839 01:21:49,070 --> 01:21:51,206 FAMILY MEMBERS AND THE UNIT BY 1840 01:21:51,273 --> 01:21:54,476 AMPLIFYING THE VOICES OF ALL 1841 01:21:54,542 --> 01:21:58,013 YOUTH AFFECTED BY SERIOUS 1842 01:21:58,079 --> 01:22:01,750 ILLNESS AND THE VOICES OF 1843 01:22:01,816 --> 01:22:06,087 MINORITIZED FAMILY MEMBERS AND 1844 01:22:06,388 --> 01:22:07,622 THINK WITH THE DEVELOPMENT 1845 01:22:07,689 --> 01:22:10,425 TRAJECTORY OF THE FAMILY AND 1846 01:22:10,492 --> 01:22:12,193 WHAT SIBLINGS THAT DIFFERENT 1847 01:22:12,260 --> 01:22:13,028 DEVELOPMENT STAGES MAY NEED 1848 01:22:13,094 --> 01:22:14,496 BECAUSE THERE'S A LACK OF 1849 01:22:14,562 --> 01:22:16,898 RESEARCH ABOUT THE YOUNG 1850 01:22:16,965 --> 01:22:17,866 SIBLINGS AND PARENTS AT THE 1851 01:22:17,932 --> 01:22:21,503 EARLY FAMILY STAGES. 1852 01:22:21,569 --> 01:22:23,405 AND WE WANT TO CALL FOR 1853 01:22:23,471 --> 01:22:24,606 ENCOURAGEMENT AND SUPPORT FOR 1854 01:22:24,673 --> 01:22:27,575 INVESTMENTS IN PARTNERSHIPS AND 1855 01:22:27,642 --> 01:22:30,211 EMPHASIZING PARTNERSHIPS WITH 1856 01:22:30,278 --> 01:22:34,416 FAMILIES AND COMMUNITIES LIVING 1857 01:22:34,482 --> 01:22:36,284 WITH SERIOUS ILLNESS TO ADVANCE 1858 01:22:36,351 --> 01:22:40,422 OUR SCIENCE AND MOVE THE NEEDLE 1859 01:22:40,488 --> 01:22:42,757 UP AND EMBRACE INDIGENOUS 1860 01:22:42,824 --> 01:22:46,294 RESEARCH METHODS, QUALITATIVE 1861 01:22:46,361 --> 01:22:47,796 METHODS, WHICH I WAS GLAD TO 1862 01:22:47,862 --> 01:22:50,765 HEAR ABOUT AND COMMUNITY-BASED 1863 01:22:50,832 --> 01:22:55,637 PARTICIPATORY RESEARCH HELPING 1864 01:22:55,704 --> 01:22:57,205 MAKE WEAVES FOR RESEARCH IN 1865 01:22:57,272 --> 01:22:57,772 PEDIATRIC PALLIATIVE CARE. 1866 01:22:57,839 --> 01:22:59,607 WE WOULD LIKE TO THANK YOU FOR 1867 01:22:59,674 --> 01:23:00,275 YOUR TIME AND SHARING THIS EVENT 1868 01:23:00,342 --> 01:23:02,777 WITH US. 1869 01:23:02,844 --> 01:23:13,021 THANK YOU. 1870 01:23:17,292 --> 01:23:19,527 >> THIS FOR BEAUTIFUL 1871 01:23:19,594 --> 01:23:20,895 PRESENTATION AND WE'LL HAVE TIME 1872 01:23:20,962 --> 01:23:21,830 FOR QUESTIONS AND ANSWER. 1873 01:23:21,896 --> 01:23:24,799 NEXT WE'LL TURN OVER TO OUR NEXT 1874 01:23:24,866 --> 01:23:35,377 SPEAKER WHO IS DR. JUSTIN YU. 1875 01:23:36,978 --> 01:23:40,915 HE'S IN INTERNAL MEDICINE AND 1876 01:23:40,982 --> 01:23:42,851 HOSPICE AND PALLIATIVE CARE 1877 01:23:42,917 --> 01:23:45,086 MEDICINE AND WORKS AT CHILDREN'S 1878 01:23:45,153 --> 01:23:45,920 HOSPITAL OF PITTSBURGH AND 1879 01:23:45,987 --> 01:23:47,789 FOCUSES ON THE IMPROVING THE 1880 01:23:47,856 --> 01:23:50,859 HEALTH AND WELL BEING OF 1881 01:23:50,925 --> 01:23:52,727 CHILDREN WITH MEDICAL COMPLEXITY 1882 01:23:52,794 --> 01:23:56,664 AND PALLIATIVE CARE INTERVE 1883 01:23:56,731 --> 01:23:56,998 INTERVENTIONS. 1884 01:23:57,065 --> 01:23:59,067 HE IS CONDUCTING SEVERAL 1885 01:23:59,134 --> 01:24:02,203 OBSERVATIONAL STUDIES EXAMINING 1886 01:24:02,270 --> 01:24:05,306 THE EXPERIENCES OF CHILD'S CARE, 1887 01:24:05,373 --> 01:24:07,108 REPORTED PHYSICAL AND MENTAL 1888 01:24:07,175 --> 01:24:08,410 HEALTH AMONG CAREGIVERS AND 1889 01:24:08,476 --> 01:24:12,714 LEVEL OF DISTRESS AMONG 1890 01:24:12,781 --> 01:24:13,014 CAREGIVERS. 1891 01:24:13,081 --> 01:24:14,115 AND TODAY HIS TOPIC WILL ADDRESS 1892 01:24:14,182 --> 01:24:17,952 THE CAREGIVER IMPACT OF 1893 01:24:18,019 --> 01:24:18,586 PEDIATRIC PALLIATIVE CARE AND 1894 01:24:18,653 --> 01:24:20,422 SERIOUS ILLNESS. 1895 01:24:20,488 --> 01:24:20,922 WELCOME, DR. YU. 1896 01:24:20,989 --> 01:24:22,724 THANK YOU FOR BEING HERE. 1897 01:24:22,791 --> 01:24:27,395 >> THANK YOU SO MUCH FOR 1898 01:24:27,462 --> 01:24:28,596 INVITING ME. 1899 01:24:28,663 --> 01:24:30,765 I'M HONORED TO SPEAK. 1900 01:24:30,832 --> 01:24:36,137 I THINK MY TALK WILL BE 1901 01:24:36,204 --> 01:24:39,908 COMPLIMENTARY TO THE PREVIOUS 1902 01:24:39,974 --> 01:24:40,141 TALK. 1903 01:24:40,208 --> 01:24:42,377 AND TO GIVE MORE CONTEXT ABOUT 1904 01:24:42,444 --> 01:24:42,777 MYSELF. 1905 01:24:42,844 --> 01:24:44,345 I'M JUNIOR FACULTY AT THE 1906 01:24:44,412 --> 01:24:46,648 UNIVERSITY OF PITTSBURGH. 1907 01:24:46,714 --> 01:24:48,883 I WORK WITH PALLIATIVE CARE AND 1908 01:24:48,950 --> 01:24:51,886 SUPPORT TEAM AND MOST IS 1909 01:24:51,953 --> 01:24:54,055 IN-PATIENT CARE BUT CARE FOR 1910 01:24:54,122 --> 01:24:55,156 PATIENTS IN THE HOME HOSPICE 1911 01:24:55,223 --> 01:24:56,424 SETTINGS AND FROM THE CLINICAL 1912 01:24:56,491 --> 01:25:03,231 SETTING I STILL WORK WITH ADULTS 1913 01:25:03,298 --> 01:25:04,599 AND I DO THINK IT'S WORTH 1914 01:25:04,666 --> 01:25:06,167 HIGHLIGHTING THAT THE WORK I'VE 1915 01:25:06,234 --> 01:25:09,904 BEEN DOING IS MADE POSSIBLE WITH 1916 01:25:09,971 --> 01:25:12,407 THE SUPPORT FROM THE NATIONAL 1917 01:25:12,474 --> 01:25:14,375 PALLIATIVE CARE RESEARCH CENTER 1918 01:25:14,442 --> 01:25:18,012 AND THE UNIVERSITY OF PITTSBURGH 1919 01:25:18,079 --> 01:25:19,647 SCIENCE INSTITUTE AMONG AND THE 1920 01:25:19,714 --> 01:25:25,720 FAMILY WELL BEING RESEARCH 1921 01:25:25,787 --> 01:25:30,391 NETWORK AS WELL AS PHILANTHROPIC 1922 01:25:30,458 --> 01:25:36,064 SUPPORT AND TO GIVE ADDITIONAL 1923 01:25:36,130 --> 01:25:37,599 CONTEST, TO TELL YOU ABOUT 1924 01:25:37,665 --> 01:25:38,867 MYSELF, I'M MARRIED AND HAVE 1925 01:25:38,933 --> 01:25:40,902 PETS BUT I THINK IT'S IMPORTANT 1926 01:25:40,969 --> 01:25:43,905 TO HIGHLIGHT I DON'T HAVE 1927 01:25:43,972 --> 01:25:44,172 CHILDREN. 1928 01:25:44,239 --> 01:25:46,341 SO I ENCOURAGE PEOPLE TO TAKE 1929 01:25:46,407 --> 01:25:47,842 ANYTHING I SAY AND MY INFERENCES 1930 01:25:47,909 --> 01:25:50,378 I TAKE FROM MY RESEARCH WITH A 1931 01:25:50,445 --> 01:25:51,846 GRAIN OF SALT UNTIL I HAVE 1932 01:25:51,913 --> 01:25:54,849 CHILDREN OF MY OWN BUT I'M 1933 01:25:54,916 --> 01:25:57,051 PART-TIME FAMILY CAREGIVER AN 1934 01:25:57,118 --> 01:26:00,722 HELPING CARE FOR MY DAD WITH 1935 01:26:00,788 --> 01:26:01,990 ADVANCED DEMENTIA IN 1936 01:26:02,056 --> 01:26:02,323 PHILADELPHIA. 1937 01:26:02,390 --> 01:26:09,864 THE OLD ADAGE OF RESEARCH OF 1938 01:26:09,931 --> 01:26:11,366 RESEARCH APPLIES HERE. 1939 01:26:11,432 --> 01:26:17,939 I'LL TAKE A COUPLE MINUTES TO 1940 01:26:18,006 --> 01:26:21,009 DRILL DOWN ON PEDIATRIC 1941 01:26:21,075 --> 01:26:24,846 PALLIATIVE CARE CAN GIVE A 1942 01:26:24,913 --> 01:26:28,316 REVIEW OF WHAT I THINK WE KNOW 1943 01:26:28,383 --> 01:26:30,351 ABOUT THESE CAREGIVERS AND MY 1944 01:26:30,418 --> 01:26:34,422 OPINIONS AND SPECULATIONS ABOUT 1945 01:26:34,489 --> 01:26:38,726 POTENTIAL FUTURE DIRECTION AND 1946 01:26:38,793 --> 01:26:46,301 RESEARCH OPPORTUNITIES. 1947 01:26:46,367 --> 01:26:52,407 IN A CLINICAL PERSPECTIVE 1948 01:26:52,473 --> 01:26:54,075 PRACTICING PEDIATRIC PALLIATIVE 1949 01:26:54,142 --> 01:26:56,277 CARE AND THOSE CHILDREN WITH 1950 01:26:56,344 --> 01:26:58,413 SERIOUS ILLNESS AND CANCER TO 1951 01:26:58,479 --> 01:27:04,385 ORGAN TRANSPLANT AND CHILDREN 1952 01:27:04,452 --> 01:27:05,920 AND FROM A RESEARCH AND 1953 01:27:05,987 --> 01:27:07,755 CAREGIVER STANDPOINT, I DO THINK 1954 01:27:07,822 --> 01:27:12,894 WE JUST NEED TO BE EXPLICIT AND 1955 01:27:12,961 --> 01:27:14,228 EMPHASIZE THE FOCUS OUR SUPPORT 1956 01:27:14,295 --> 01:27:16,030 OR RESEARCH OF CAREGIVERS AND 1957 01:27:16,097 --> 01:27:20,668 RESEARCHERS OF CHILDREN NOT TO 1958 01:27:20,735 --> 01:27:21,803 GET WITH THE TERMINOLOGY BUT 1959 01:27:21,869 --> 01:27:23,371 CHRONIC HEALTH CONDITIONS AND 1960 01:27:23,438 --> 01:27:25,106 I'LL USE THE TERM CHILDREN WITH 1961 01:27:25,173 --> 01:27:29,077 MEDICAL COMPLEXITY BUT I DO 1962 01:27:29,143 --> 01:27:31,412 THINK OTHER CONDITIONS SUCH AS 1963 01:27:31,479 --> 01:27:35,383 HEALTH CARE NEEDS ALL APPLIES. 1964 01:27:35,450 --> 01:27:39,053 AND IT'S CHILDREN WHO HAVE 1965 01:27:39,120 --> 01:27:40,755 CHRONIC AND SEVERE HEALTH 1966 01:27:40,822 --> 01:27:45,259 CONDITIONS WHO IMPACT MULTIPLE 1967 01:27:45,326 --> 01:27:48,563 ORG JON SYSTEMS AND THE NEED FOR 1968 01:27:48,630 --> 01:27:51,799 ASSISTANCE WITH DAILY ACTIVITY 1969 01:27:51,866 --> 01:27:55,336 AND AN OVER REPRESENTATION OF 1970 01:27:55,403 --> 01:27:56,904 CHILDREN WITH SEVERE IMPAIRMENT 1971 01:27:56,971 --> 01:28:07,382 WHO UTILIZE TECHNOLOGY. 1972 01:28:07,949 --> 01:28:09,584 I'M SUMMARIZING WHAT A LOT OF 1973 01:28:09,651 --> 01:28:11,686 OUR SPEAKERS TODAY AND YESTERDAY 1974 01:28:11,753 --> 01:28:15,690 TALKED ABOUT BUT I WANT TO GO 1975 01:28:15,757 --> 01:28:21,663 OVER A FEW POINTS WORTH R 1976 01:28:21,729 --> 01:28:22,196 RE-EMPHASIZING. 1977 01:28:22,263 --> 01:28:23,731 CHILDREN WITH MEDICAL COMPLEXITY 1978 01:28:23,798 --> 01:28:25,266 ARE AT RISK FOR THE POOREST 1979 01:28:25,333 --> 01:28:28,202 HEALTH OUTCOME, MORTALITY AND 1980 01:28:28,269 --> 01:28:30,772 UNMET NEEDS AND ALSO INCLUDES 1981 01:28:30,838 --> 01:28:32,840 THINGS IN MATERIALS OF LOW 1982 01:28:32,907 --> 01:28:34,275 SATISFACTION WITH CARE. 1983 01:28:34,342 --> 01:28:36,477 COMPLICATIONS WITH PROCEDURES OR 1984 01:28:36,544 --> 01:28:38,146 INFECTIONS, UNTREATED SYMPTOMS 1985 01:28:38,212 --> 01:28:43,951 OF PATHOLOGY, SIDE EFFECTS. 1986 01:28:44,018 --> 01:28:46,087 I ALSO THINK WE SHOULD 1987 01:28:46,154 --> 01:28:49,524 RE-EMPHASIZE THEY HAVE IMPACT ON 1988 01:28:49,590 --> 01:28:51,159 PEDIATRIC HEALTH SYSTEMS. 1989 01:28:51,225 --> 01:28:52,727 WE SEE NUMBERS FROM FOLKS ON THE 1990 01:28:52,794 --> 01:28:55,663 CALL OR ON THE WEBINAR THAT 1991 01:28:55,730 --> 01:28:56,431 CHILDREN WITH MEDICAL COMPLEXITY 1992 01:28:56,497 --> 01:28:59,400 ACCOUNT FOR ONE-THIRD OF ALL 1993 01:28:59,467 --> 01:29:02,537 PEDIATRIC HEALTH EXPENDITURES 1994 01:29:02,603 --> 01:29:04,605 AND HALF THE CHILDREN HOSPITALS 1995 01:29:04,672 --> 01:29:06,541 AND PATIENT-RELATED COSTS. 1996 01:29:06,607 --> 01:29:08,776 I THINK IT'S WORTH HIGHLIGHTING 1997 01:29:08,843 --> 01:29:11,512 THESE NUMBERS ARE FROM 1998 01:29:11,579 --> 01:29:16,217 STUDIES -- DON'T QUOTE ME ABOUT 1999 01:29:16,284 --> 01:29:18,086 10 YEARS OLD AND THERE'S NO 2000 01:29:18,152 --> 01:29:21,789 TRENDS OR EVIDENCE I'M AWARE OF 2001 01:29:21,856 --> 01:29:23,991 TO SUGGEST THE NATIONAL'S GOTTEN 2002 01:29:24,058 --> 01:29:24,225 SMALLER. 2003 01:29:24,292 --> 01:29:25,359 IF ANYTHING IT'S PROBABLY 2004 01:29:25,426 --> 01:29:26,761 SIGNIFICANTLY INCREASED. 2005 01:29:26,828 --> 01:29:28,496 TO ME, JUST AS IMPORTANT AS THE 2006 01:29:28,563 --> 01:29:34,435 FINANCIAL IMPLICATIONS, ARE THE 2007 01:29:34,502 --> 01:29:36,504 IMPLICATIONS ON THE OPERATIONAL 2008 01:29:36,571 --> 01:29:40,541 CAPACITIES OF PEDIATRIC HEALTH 2009 01:29:40,608 --> 01:29:40,775 SYSTEMS. 2010 01:29:40,842 --> 01:29:44,078 HERE I, THINK THIS PERSONAL 2011 01:29:44,145 --> 01:29:49,717 ANECDOTE IS PROBABLY TRUE. 2012 01:29:49,784 --> 01:29:59,393 IN 2016 AND WE LOOKED AT 2013 01:29:59,460 --> 01:30:09,170 MEDICALLY COMPLEX CHILDREN AND 2014 01:30:09,237 --> 01:30:11,305 HALF CONSISTENT OF CHILDREN WITH 2015 01:30:11,372 --> 01:30:13,141 MEDICAL COMPLEXITY FOR PROLONGED 2016 01:30:13,207 --> 01:30:14,776 HOSPITAL STAYS FROM OVER TWO 2017 01:30:14,842 --> 01:30:17,111 WEEKS TO MONTHS AT A TIME. 2018 01:30:17,178 --> 01:30:22,784 AND I WAS LOOKING AT THE DYNAMIC 2019 01:30:22,850 --> 01:30:23,885 WAS TRUE. 2020 01:30:23,951 --> 01:30:26,354 AND OUR CARE CENTER THERE IS 2021 01:30:26,420 --> 01:30:27,488 RELATIVELY NEW BUT EVEN 2022 01:30:27,555 --> 01:30:30,024 WESTBOUND THE PAST TWO YEARS 2023 01:30:30,091 --> 01:30:32,693 THEY'VE HAD TO PUT PAUSES ON 2024 01:30:32,760 --> 01:30:34,362 ACCEPTING NEW REFERRALS DUE TO 2025 01:30:34,428 --> 01:30:34,862 CAPACITY ISSUES. 2026 01:30:34,929 --> 01:30:39,567 I THINK IT REFLECTS THE 2027 01:30:39,634 --> 01:30:41,169 MEDICALLY COMPLEX CHILDREN ARE 2028 01:30:41,235 --> 01:30:43,237 ONE OF THE FASTEST GROWING 2029 01:30:43,304 --> 01:30:44,338 PEDIATRIC POPULATION IN THE 2030 01:30:44,405 --> 01:30:44,639 COUNTRY. 2031 01:30:44,705 --> 01:30:54,982 A FEW YEARS AGO MY MENTOR AND 2032 01:30:55,049 --> 01:30:57,819 FROM THE NATIONAL SURVEY OF 2033 01:30:57,885 --> 01:31:01,556 CHILDREN'S HEALTH IT'S NOT 2034 01:31:01,622 --> 01:31:03,391 PERFECT BUT AT THE END OF THE 2035 01:31:03,457 --> 01:31:05,626 DAY IT'S GOOD ENOUGH AND IF 2036 01:31:05,693 --> 01:31:09,630 ANYTHING IT UNDER ESTIMATES THE 2037 01:31:09,697 --> 01:31:11,799 COMPLEXITY OF MEDICALLY 2038 01:31:11,866 --> 01:31:12,800 UNADDRESSED CHILDREN AND SHOWED 2039 01:31:12,867 --> 01:31:15,169 ABOUT 1% OF THE PEDIATRIC 2040 01:31:15,236 --> 01:31:16,804 POPULATION NOW CONSISTS OF 2041 01:31:16,871 --> 01:31:18,606 MEDICALLY COMPLEX CHILDREN AND 2042 01:31:18,673 --> 01:31:21,442 ACCOUNTS FOR ABOUT 1.2 MILLION 2043 01:31:21,509 --> 01:31:21,976 CHILDREN. 2044 01:31:22,043 --> 01:31:25,813 THAT'S A ROUGH DOUBLING IN THE 2045 01:31:25,880 --> 01:31:30,685 LAST DECADE AND 17,000 CHILDREN 2046 01:31:30,751 --> 01:31:33,521 ARE DIAGNOSED EACH YEAR WITH 2047 01:31:33,588 --> 01:31:37,124 CANCER AND 40,000 ADULTS ARE 2048 01:31:37,191 --> 01:31:39,493 LIVING WITH CYSTIC FIBROSIS AND 2049 01:31:39,560 --> 01:31:42,763 TO HAMMER HOME SOMETHING 2050 01:31:42,830 --> 01:31:44,198 ROSENBERG MENTIONED YESTERDAY, 2051 01:31:44,265 --> 01:31:46,434 CLINICIAN SCIENTISTS FOCUSSED ON 2052 01:31:46,500 --> 01:31:49,170 IMPROVING THE CARE AND HEALTH 2053 01:31:49,237 --> 01:31:50,571 AND QUALITY OF LIVES OR IN THESE 2054 01:31:50,638 --> 01:31:53,174 CHILDREN AND FAMILIES, WE DON'T 2055 01:31:53,241 --> 01:32:00,114 HAVE A CLEAR RESEARCH HUB. 2056 01:32:00,181 --> 01:32:01,148 HOPEFULLY THIS CAN START A NEW 2057 01:32:01,215 --> 01:32:07,188 TIDE. 2058 01:32:07,255 --> 01:32:10,291 SO WHY ARE FAMILY CAREGIVERS 2059 01:32:10,358 --> 01:32:11,392 RELATIVE TO THE NICHD? 2060 01:32:11,459 --> 01:32:16,631 HERE TO ADD A FEW POINTS TO 2061 01:32:16,697 --> 01:32:18,132 KIM'S TALK. 2062 01:32:18,199 --> 01:32:20,468 ONE, THOSE CHILDREN EVEN IF THEY 2063 01:32:20,534 --> 01:32:21,869 HAVE A LOT OF HEALTH CARE NEEDS 2064 01:32:21,936 --> 01:32:26,374 SPEND THE VAST MAJORITY OF TIME 2065 01:32:26,440 --> 01:32:26,774 AT HOME. 2066 01:32:26,841 --> 01:32:28,776 THEY'RE HOSPITALIZED MORE BUT 2067 01:32:28,843 --> 01:32:30,945 THE VAST MAJORITY OF THEIR LIVES 2068 01:32:31,012 --> 01:32:32,280 ARE BEING SPENT AT HOME BEING 2069 01:32:32,346 --> 01:32:34,415 SUPPORTED BY THEIR FAMILIES AND 2070 01:32:34,482 --> 01:32:35,683 AS PEDIATRIC CLINICIANS ON THE 2071 01:32:35,750 --> 01:32:37,852 CALL I THINK WE ALL INHERENTLY 2072 01:32:37,919 --> 01:32:40,187 UNDERSTAND PARENTS AND FAMILY 2073 01:32:40,254 --> 01:32:41,589 CAREGIVERS ARE CRITICAL PARTNERS 2074 01:32:41,656 --> 01:32:46,027 IN ANY OF OUR ATTEMPTS TO 2075 01:32:46,093 --> 01:32:46,994 ENHANCE THIS PEDIATRIC 2076 01:32:47,061 --> 01:32:49,630 POPULATION'S CARE AND QUALITY OF 2077 01:32:49,697 --> 01:32:52,600 LIFE AND HEALTH. 2078 01:32:52,667 --> 01:32:54,035 FROM A SPECIFIC STANDPOINT THE 2079 01:32:54,101 --> 01:32:57,305 TRAJECTORY OF THE LIFE SPAN OF 2080 01:32:57,371 --> 01:33:02,510 MEDICALLY COMPLEX CHILDREN 2081 01:33:02,576 --> 01:33:04,512 CREATES A NEW PARADIGM. 2082 01:33:04,578 --> 01:33:11,319 THE FIGURE ON THE RIGHT I LIKE 2083 01:33:11,385 --> 01:33:16,257 TO LOOK AT THE STUDENTS WHO 2084 01:33:16,324 --> 01:33:17,558 ROTATED WITH ME AND THESE ARE 2085 01:33:17,625 --> 01:33:21,529 THE TYPICAL TRAJECTORIES ABOUT 2086 01:33:21,595 --> 01:33:22,630 ADULT CONDITIONS. 2087 01:33:22,697 --> 01:33:25,700 YOU HAVE THE GRADUAL DECLINE AND 2088 01:33:25,766 --> 01:33:27,768 DROP OFF IN CANCER AND STEP WISE 2089 01:33:27,835 --> 01:33:30,338 DECLINE WE LEARNED ABOUT IN THE 2090 01:33:30,404 --> 01:33:33,941 HEART DISEASE OR COPD AND 2091 01:33:34,008 --> 01:33:39,914 ANOTHER DECLINE IN FRAILTY AND 2092 01:33:39,981 --> 01:33:40,181 DEMENTIA. 2093 01:33:40,247 --> 01:33:43,784 I DON'T THINK THE CMC LIFE 2094 01:33:43,851 --> 01:33:45,453 EXPERIENCE IS LIKE THIS. 2095 01:33:45,519 --> 01:33:47,621 THE FIRST COUPLE OF YEARS IT'S 2096 01:33:47,688 --> 01:33:49,557 VARIABLE WHERE THE HEALTH CARE 2097 01:33:49,623 --> 01:33:51,192 TEAMS AND PARENTS ARE LEARNING 2098 01:33:51,258 --> 01:33:53,828 ABOUT THE CHILD, LEARNING WHAT 2099 01:33:53,894 --> 01:33:55,563 NETWORK CONDITIONS ARE IMPACTING 2100 01:33:55,629 --> 01:33:58,532 THE CHILD AND FIGURING OUT THE 2101 01:33:58,599 --> 01:34:02,937 BEST MEDICAL CARE PLAN TO TREAT 2102 01:34:03,004 --> 01:34:06,474 THAT CHILD. 2103 01:34:06,540 --> 01:34:08,242 FROM THERE THE HEALTH CAN GO UP 2104 01:34:08,309 --> 01:34:10,945 AND DOWN AND SURPASS AN EXISTING 2105 01:34:11,012 --> 01:34:15,449 BASELINE AND GO DOWN AGAIN AND 2106 01:34:15,516 --> 01:34:17,718 WHERE IT TOOK YEARS OF POTENTIAL 2107 01:34:17,785 --> 01:34:18,886 STABILITY AND ENTERED PUBERTY 2108 01:34:18,953 --> 01:34:21,722 AND ADOLESCENCE AND YOUNG 2109 01:34:21,789 --> 01:34:23,324 ADULTHOOD AND FOR SOME CHILDREN 2110 01:34:23,391 --> 01:34:26,260 THAT'S WHERE THEIR HEALTH 2111 01:34:26,327 --> 01:34:28,496 DECLINES BUT ALL TO HIGHLIGHT 2112 01:34:28,562 --> 01:34:30,164 THE TRAJECTORY OF MEDICALLY 2113 01:34:30,231 --> 01:34:32,600 COMPLEX CHILD IS REALLY 2114 01:34:32,666 --> 01:34:32,867 UNCERTAIN. 2115 01:34:32,933 --> 01:34:35,503 IT'S REALLY UNCERTAIN AND WE'RE 2116 01:34:35,569 --> 01:34:37,238 REALLY BAD AT PREDICTING WHAT'S 2117 01:34:37,304 --> 01:34:40,041 GOING TO HAPPEN NEXT AND EVEN IF 2118 01:34:40,107 --> 01:34:42,076 WE HAVE A FEELING AND USE THE 2119 01:34:42,143 --> 01:34:44,245 TERM WHY THIS IS GOING TO HAPPEN 2120 01:34:44,311 --> 01:34:45,980 WE ARE BAD AT PREDICTING WHEN 2121 01:34:46,047 --> 01:34:50,818 IT'S GOING TO HAPPEN. 2122 01:34:50,885 --> 01:34:54,755 AS A RESULT, IN DEALING WITH THE 2123 01:34:54,822 --> 01:34:56,924 NEW PARADIGM OR TRAJECTORY HAS 2124 01:34:56,991 --> 01:35:02,229 LIMITED AND HAMPERED OUR ABILITY 2125 01:35:02,296 --> 01:35:06,367 TO BUILD EVIDENCE-BASED NOTE 2126 01:35:06,434 --> 01:35:07,835 JUST STRATEGIES BUT 2127 01:35:07,902 --> 01:35:08,369 INTERVENTIONS TO SUPPORT 2128 01:35:08,436 --> 01:35:14,542 CAREGIVERS THROUGH THE PROCESS. 2129 01:35:14,608 --> 01:35:20,915 AND NOW TO TRANSITION TO WHAT WE 2130 01:35:20,981 --> 01:35:22,416 KNOW AND USING QUALITATIVE 2131 01:35:22,483 --> 01:35:24,018 RESEARCH METHODS AND THE PEOPLE 2132 01:35:24,085 --> 01:35:26,320 WHO CAN MAKE A FOUNDATION FOR 2133 01:35:26,387 --> 01:35:30,825 THE WORK HAVE BEEN NURSE 2134 01:35:30,891 --> 01:35:32,393 SCIENTISTS WHO TOOK AN EARLY 2135 01:35:32,460 --> 01:35:35,429 INTEREST IN THE FIELD AND WHAT 2136 01:35:35,496 --> 01:35:36,497 WE JUST TALKED ABOUT. 2137 01:35:36,564 --> 01:35:39,800 AND TO GET MORE SPECIFICS OF 2138 01:35:39,867 --> 01:35:44,271 TYPICAL CMC CAREGIVER. 2139 01:35:44,338 --> 01:35:46,540 THEY HAVE PHYSICALLY, 2140 01:35:46,607 --> 01:35:49,110 COGNITIVELY CARE 2141 01:35:49,176 --> 01:35:50,144 RESPONSIBILITIES THEY HAVE TO 2142 01:35:50,211 --> 01:35:51,645 ARRANGE THE VAST MAJORITY OF 2143 01:35:51,712 --> 01:35:53,447 THEIR CHILD'S CARE WHILE 2144 01:35:53,514 --> 01:35:55,182 REMAINING CONSTANTLY VIGILANT 2145 01:35:55,249 --> 01:36:02,056 OVER THEIR CHILD'S MIN 2146 01:36:02,123 --> 01:36:03,958 MINUTE-TO-MINUTE HEALTH AND 2147 01:36:04,024 --> 01:36:08,929 OFTEN WITH MINIMAL SUPPORT IN 2148 01:36:08,996 --> 01:36:10,664 THE HOME CARE SETTING AND ARE 2149 01:36:10,731 --> 01:36:11,899 RESPONSIBLE FOR ADVOCATING FOR 2150 01:36:11,966 --> 01:36:13,367 THEIR CHILD AND ADVOCATING FOR 2151 01:36:13,434 --> 01:36:16,704 THEIR CHILD IN A FACE TO FACE 2152 01:36:16,770 --> 01:36:18,772 SETTING WITH CLINICIANS AND 2153 01:36:18,839 --> 01:36:22,510 ADVOCATING WITH ALL THE FAILURES 2154 01:36:22,576 --> 01:36:28,449 IN THE HEALTH CARE SYSTEM. 2155 01:36:28,516 --> 01:36:34,488 GETTING ON THE PHONE AND 2156 01:36:34,555 --> 01:36:36,557 ADVOCATING WITH REPRESENTATIVES 2157 01:36:36,624 --> 01:36:38,626 AND I THINK PEOPLE UNDERSTAND 2158 01:36:38,692 --> 01:36:40,494 THE FACT THAT PARENTS AND 2159 01:36:40,561 --> 01:36:42,363 CAREGIVERS UNDERSTAND AND KNOW 2160 01:36:42,429 --> 01:36:45,799 THEIR CHILD BEST BUT THAT'S ALSO 2161 01:36:45,866 --> 01:36:47,268 A RESPONSIBILITY ON THE PARENTS 2162 01:36:47,334 --> 01:36:49,570 TO MAKE SURE THEY'RE PROPERLY 2163 01:36:49,637 --> 01:36:50,938 COMMUNICATING CONCERNS ABOUT 2164 01:36:51,005 --> 01:36:52,506 SYMPTOMS, CHANGES IN HEALTH 2165 01:36:52,573 --> 01:36:55,109 STATUS AND QUESTIONS OR CONCERNS 2166 01:36:55,176 --> 01:37:00,748 OR ANXIETIES OF THEIR CHILD. 2167 01:37:00,814 --> 01:37:06,187 THAT'S DONE IN THE CONTEXT OF 2168 01:37:06,253 --> 01:37:06,487 FRUSTRATION. 2169 01:37:06,554 --> 01:37:12,526 SOMETIMES UNSUPPORTED CLINICIANS 2170 01:37:12,593 --> 01:37:16,130 RESPECT THE PARENT'S OPINION AND 2171 01:37:16,197 --> 01:37:18,132 WHEN EVERYTHING'S DONE QUOTE, 2172 01:37:18,199 --> 01:37:20,100 UNQUOTE, PERFECTLY BECAUSE OF 2173 01:37:20,167 --> 01:37:24,638 THE CHILD'S UNDERLYING MEDICAL 2174 01:37:24,705 --> 01:37:27,241 CAPABILITY WE STILL HAVE 2175 01:37:27,308 --> 01:37:34,114 SETBACKS AND RELATEDLY, AND ALL 2176 01:37:34,181 --> 01:37:35,950 THIS IS BEING PERFORMED IN THE 2177 01:37:36,016 --> 01:37:38,352 CONTEXT OF UNCERTAINTY ABOUT THE 2178 01:37:38,419 --> 01:37:38,586 FUTURE. 2179 01:37:38,652 --> 01:37:42,256 ONE FOR THEIR CHILD'S FUTURE 2180 01:37:42,323 --> 01:37:45,993 HEALTH AND ALSO WHAT THEIR 2181 01:37:46,060 --> 01:37:49,029 FAMILY'S FUTURE IS GOING TO LOOK 2182 01:37:49,096 --> 01:37:49,230 LIKE. 2183 01:37:49,296 --> 01:37:50,264 THEY'RE ALSO EXPECTED TO NOT 2184 01:37:50,331 --> 01:37:52,399 ONLY SHARE AND ENGAGE IN 2185 01:37:52,466 --> 01:37:54,001 DECISION MAKING BUT COMPLICATED 2186 01:37:54,068 --> 01:37:55,302 SHARED DECISION MAKING WHERE 2187 01:37:55,369 --> 01:37:56,670 THEY'RE NOT PICKING BETWEEN ONE 2188 01:37:56,737 --> 01:37:59,273 OR TWO CHOICES WHERE, WELL, 2189 01:37:59,340 --> 01:38:01,141 YEAH, YOU CAN GO THIS WAY AND 2190 01:38:01,208 --> 01:38:02,476 MAYBE THIS MAKES SENSE. 2191 01:38:02,543 --> 01:38:07,948 IT'S CHOICE, A, B, C OR D. 2192 01:38:08,015 --> 01:38:12,853 THEY ALL HAVE DONE SIDES AND WE 2193 01:38:12,920 --> 01:38:15,189 DON'T REALLY KNOW THE RIGHT 2194 01:38:15,256 --> 01:38:16,657 CHOICE AND CAN'T TELL YOU WHAT 2195 01:38:16,724 --> 01:38:19,627 LIFE IS GOING TO LOOK LIKE AFTER 2196 01:38:19,693 --> 01:38:20,828 EACH OF THE CHOICES BECAUSE WE 2197 01:38:20,894 --> 01:38:25,199 DON'T KNOW AND DOING THIS ALL 2198 01:38:25,266 --> 01:38:26,333 WHILE BEARING WITNESS TO THEIR 2199 01:38:26,400 --> 01:38:31,772 CHILD POTENTIALLY EXPERIENCING A 2200 01:38:31,839 --> 01:38:34,508 LOT OF SYMPTOMS. 2201 01:38:34,575 --> 01:38:44,918 I'M RUNNING BEHIND. 2202 01:38:49,523 --> 01:38:50,391 I THINK THIS IS WHERE WE'RE IN 2203 01:38:50,457 --> 01:38:56,163 THE INFANCY OF THE FIELD AND I 2204 01:38:56,230 --> 01:39:02,336 SAW THIS FIGURE WITH COLLEAGUES 2205 01:39:02,403 --> 01:39:03,904 IN TORONTO AND LOOK AT THE 2206 01:39:03,971 --> 01:39:05,439 DIFFERENT DOMAINS PEOPLE ARE 2207 01:39:05,506 --> 01:39:05,706 IMPACTED. 2208 01:39:05,773 --> 01:39:09,176 I'LL GO OVER A BRIEF REVIEW AND 2209 01:39:09,243 --> 01:39:13,681 FLY THROUGH SOME. 2210 01:39:13,747 --> 01:39:19,820 I APOLOGIZE IT'S GOING TO BE A 2211 01:39:19,887 --> 01:39:22,523 LOT OF TABLE DATA BUT I'LL 2212 01:39:22,589 --> 01:39:23,390 SUMMARIZE. 2213 01:39:23,457 --> 01:39:27,628 CHILDREN WITH COMPLEXITY ARE 2214 01:39:27,695 --> 01:39:31,532 OVER REPRESENTED MONTH THOSE 2215 01:39:31,598 --> 01:39:32,299 EXPERIENCING SOCIAL DETERMINATES 2216 01:39:32,366 --> 01:39:33,534 OF HEALTH AND WORTH HIGHLIGHTING 2217 01:39:33,600 --> 01:39:39,006 PEOPLE WHO IDENTIFY AS BLACK ARE 2218 01:39:39,073 --> 01:39:40,107 DISPROPORTIONATELY REPRESENTED 2219 01:39:40,174 --> 01:39:43,477 WITH CHILDREN WITH MEDICAL 2220 01:39:43,544 --> 01:39:44,178 COMPLEXITY AND LOWER LEVELS OF 2221 01:39:44,244 --> 01:39:50,250 EDUCATIONAL ATTAINMENT AND 2222 01:39:50,317 --> 01:39:52,219 HIGHER LEVELS OF FAMILIES LIVING 2223 01:39:52,286 --> 01:39:57,524 IN EITHER SINGLE PARENT OR 2224 01:39:57,591 --> 01:40:00,361 GRANDPARENT-LED HOUSEHOLDS. 2225 01:40:00,427 --> 01:40:03,130 THIS ALL MEANS IT LEADS TO A LOT 2226 01:40:03,197 --> 01:40:04,498 OF FINANCIAL AND EMPLOYMENT 2227 01:40:04,565 --> 01:40:04,765 ADVERSITY. 2228 01:40:04,832 --> 01:40:07,968 I'M NOT GOING TO GO THROUGH THE 2229 01:40:08,035 --> 01:40:12,973 NUMBERS BUT HIGHER PROPORTIONS 2230 01:40:13,040 --> 01:40:14,875 IN EXPERIENCING OF TROUBLE 2231 01:40:14,942 --> 01:40:18,112 COVERING BILLS AND FOOD AND RENT 2232 01:40:18,178 --> 01:40:19,380 AND EMPLOYMENT ACTIVITIES. 2233 01:40:19,446 --> 01:40:20,848 IF PEOPLE HAVE TO CUT DOWN ON 2234 01:40:20,914 --> 01:40:23,283 THEIR JOB OR IF THERE'S ANOTHER 2235 01:40:23,350 --> 01:40:25,152 CAREGIVER IN THE JOB KEEPING THE 2236 01:40:25,219 --> 01:40:27,855 JOB THEY MAY NOT LIKE TO 2237 01:40:27,921 --> 01:40:33,394 MAINTAIN THE CHILD'S INSURANCE 2238 01:40:33,460 --> 01:40:36,196 AND A STUDY WITH CHILDREN WITH 2239 01:40:36,263 --> 01:40:38,065 MEDICAL HEALTH CARE NEEDS AND 2240 01:40:38,132 --> 01:40:42,770 JUST HAVING SPECIAL HEALTH CARE 2241 01:40:42,836 --> 01:40:45,873 NEEDS IS ASSOCIATED WITH $20,000 2242 01:40:45,939 --> 01:40:52,146 OF GONE INCOME PER HOUSEHOLD PER 2243 01:40:52,212 --> 01:41:02,322 YEAR. 2244 01:41:13,500 --> 01:41:15,836 THESE FAMILIES ARE MORE APT TO 2245 01:41:15,903 --> 01:41:19,139 REPORT BEING ANGRY OR BOTHERED 2246 01:41:19,206 --> 01:41:20,207 WITH THEIR CHILD. 2247 01:41:20,274 --> 01:41:22,743 USING THE QUALITY OF LIFE 2248 01:41:22,810 --> 01:41:27,915 INSTRUMENT BY THE CDC THEY 2249 01:41:27,981 --> 01:41:30,751 REPORTED MENTAL HEALTH QUALITY 2250 01:41:30,818 --> 01:41:33,687 OF LIFE ASSOCIATED WITH THOSE 2251 01:41:33,754 --> 01:41:35,088 WITH HEART DISEASE OR CANCER. 2252 01:41:35,155 --> 01:41:39,760 THIS WAS PART OF THE 2253 01:41:39,827 --> 01:41:40,594 LONGITUDINAL PROJECT WE FOUND 2254 01:41:40,661 --> 01:41:44,998 QUALITY OF LIFE DIDN'T IMPROVE 2255 01:41:45,065 --> 01:41:47,968 OVER ONE YEAR DESPITE 2256 01:41:48,035 --> 01:41:48,602 SIGNIFICANT IMPROVEMENTS IN CARE 2257 01:41:48,669 --> 01:41:58,946 COORDINATION EXPERIENCES. 2258 01:41:59,012 --> 01:42:01,281 IN ANOTHER SURVEY CAREGIVERS SAY 2259 01:42:01,348 --> 01:42:03,116 THEY'RE EXPERIENCING EMOTIONAL 2260 01:42:03,183 --> 01:42:08,255 STRESS BUT WHAT ASPECTS ARE 2261 01:42:08,322 --> 01:42:10,557 IMPACTIVE AND THEY REPORT LOWER 2262 01:42:10,624 --> 01:42:12,025 LEVELS OF MENTAL HEALTH AND 2263 01:42:12,092 --> 01:42:14,328 HIGHER SYMPTOMS OF ANXIETY AND 2264 01:42:14,394 --> 01:42:15,796 REDUCED ABILITY TO CONTROL THEIR 2265 01:42:15,863 --> 01:42:20,267 EMOTIONS AND HUGE IMPACTS ON 2266 01:42:20,334 --> 01:42:26,240 FATIGUE AND RELATED IMPAIRMENT 2267 01:42:26,306 --> 01:42:28,542 AND ABOUT HALF SYMPTOMS OF 2268 01:42:28,609 --> 01:42:32,613 ANXIETY. 2269 01:42:32,679 --> 01:42:36,817 I COULDN'T FIND MUCH BUT THIS 2270 01:42:36,884 --> 01:42:40,354 WAS TAKEN BY THE INTERACTIVE 2271 01:42:40,420 --> 01:42:44,324 QUERY LOOKING AT PHYSICAL HEALTH 2272 01:42:44,391 --> 01:42:45,926 USING DIFFERENT DEFINITION OF 2273 01:42:45,993 --> 01:42:48,362 MENTALLY COMPLEX CHILDREN AND 2274 01:42:48,428 --> 01:42:52,065 HIGHER PROPORTIONS REPORT POORER 2275 01:42:52,132 --> 01:42:52,466 PHYSICAL HEALTH. 2276 01:42:52,533 --> 01:42:58,138 AND THESE ARE TWO STUDIES UP IN 2277 01:42:58,205 --> 01:42:59,172 FRONT WHO USED DATA SETS SHOWING 2278 01:42:59,239 --> 01:43:01,542 CARING FOR A CHILD OR INFANT 2279 01:43:01,608 --> 01:43:03,911 WITH MAJOR CONGENITAL ANOMALY 2280 01:43:03,977 --> 01:43:06,613 WAS ASSOCIATED WITH SUBSEQUENT 2281 01:43:06,680 --> 01:43:07,481 INCREASED RISK OF MORTALITY AND 2282 01:43:07,548 --> 01:43:12,052 CARDIOVASCULAR RISK. 2283 01:43:12,119 --> 01:43:14,154 AND I THINK ONE LAST THING 2284 01:43:14,221 --> 01:43:18,759 BEFORE I GET INTO FUTURE 2285 01:43:18,825 --> 01:43:21,895 DIRECTION TO HIGHLIGHT THAT I 2286 01:43:21,962 --> 01:43:24,598 THINK THE FOCUS HAS BEEN WHILE 2287 01:43:24,665 --> 01:43:26,033 IMPORTANT HAS BEEN LARGELY 2288 01:43:26,099 --> 01:43:30,037 FOCUSSED ON CHANGING OR FINDING 2289 01:43:30,103 --> 01:43:31,538 ENHANCED MODELS OF CARE AND CARE 2290 01:43:31,605 --> 01:43:31,905 COORDINATION. 2291 01:43:31,972 --> 01:43:35,976 TO HIGHLIGHT SOME WORK DONE IN 2292 01:43:36,043 --> 01:43:37,878 TORONTO WITH A STEP CARE MODEL 2293 01:43:37,945 --> 01:43:41,348 INTEGRATING MENTAL HEALTH 2294 01:43:41,415 --> 01:43:41,982 PROFESSIONALS IN A COMPLEX CARE 2295 01:43:42,049 --> 01:43:46,853 CENTER. 2296 01:43:46,920 --> 01:43:50,724 THIS IS MY LAST SLIDE HERE. 2297 01:43:50,791 --> 01:43:53,226 THE LAST THING I'LL TALK ABOUT 2298 01:43:53,293 --> 01:43:55,596 ARE POTENTIAL FUTURE RESEARCH 2299 01:43:55,662 --> 01:43:56,897 DIRECTIONS. 2300 01:43:56,964 --> 01:43:59,399 ON ONE LEVEL IT'S CONTINUING OUR 2301 01:43:59,466 --> 01:44:01,602 DESCRIPTIVE AND OBSERVATIONAL 2302 01:44:01,668 --> 01:44:02,402 WORK. 2303 01:44:02,469 --> 01:44:06,073 THERE'S MORE TO DESCRIBE AND SO 2304 01:44:06,139 --> 01:44:06,807 WE CAN BETTER UNDERSTAND AND 2305 01:44:06,873 --> 01:44:11,812 HERE'S IDEAS. 2306 01:44:11,878 --> 01:44:13,280 WE NEED MULTI-CENTER NATIONAL 2307 01:44:13,347 --> 01:44:18,185 AND LONGITUDINAL WORK BASICALLY 2308 01:44:18,251 --> 01:44:20,187 JUST DESCRIBING THE HEALTH CARE 2309 01:44:20,253 --> 01:44:21,421 WELL BEING AND CHANGES OVER 2310 01:44:21,488 --> 01:44:21,822 TIME. 2311 01:44:21,888 --> 01:44:23,357 WE NEED A BETTER UNDERSTANDING 2312 01:44:23,423 --> 01:44:25,892 OF WHAT TO DO FOR OUR HEALTH AND 2313 01:44:25,959 --> 01:44:27,828 WELL BEING HOW IT ASSOCIATED 2314 01:44:27,894 --> 01:44:29,396 WITH CHILD HEALTH. 2315 01:44:29,463 --> 01:44:32,866 WHAT DOMAINS OF CAREGIVER HEALTH 2316 01:44:32,933 --> 01:44:34,501 AND INTERVENE IMPACT CHILD 2317 01:44:34,568 --> 01:44:35,602 HEALTH AND CLEARLY NEED TO 2318 01:44:35,669 --> 01:44:37,170 BETTER UNDERSTAND STRATEGIES TO 2319 01:44:37,237 --> 01:44:40,574 BETTER ENGAGE FAMILIES IN OUR 2320 01:44:40,641 --> 01:44:42,776 RESEARCH AND IMPLEMENTING 2321 01:44:42,843 --> 01:44:43,443 EFFICACIOUS INTERVENTIONS AND I 2322 01:44:43,510 --> 01:44:49,883 THINK IF YOU GO TO THE END IF 2323 01:44:49,950 --> 01:44:53,053 YOU GO TO THE NEXT SLIDE I'M 2324 01:44:53,120 --> 01:44:57,457 COMING FROM THE PERSPECTIVE OF 2325 01:44:57,524 --> 01:44:58,792 DEVELOPING FOLLOWING THE STEPS 2326 01:44:58,859 --> 01:45:02,295 OF TRYING TO DEVELOP A 2327 01:45:02,362 --> 01:45:04,164 PSYCHOSOCIAL BEHAVIORAL 2328 01:45:04,231 --> 01:45:04,998 INTERVENTION AND THERE'S 2329 01:45:05,065 --> 01:45:06,800 DEVELOPING PEER SUPPORT AND 2330 01:45:06,867 --> 01:45:09,603 INVENTIONS OR BEST PRACTICES FOR 2331 01:45:09,670 --> 01:45:10,270 STARTING AN ENVIRONMENT SUPPORT 2332 01:45:10,337 --> 01:45:12,806 GROUP FOR FAMILY CAREGIVERS. 2333 01:45:12,873 --> 01:45:15,108 THERE'S A LOT OF OTHER FORMS OF 2334 01:45:15,175 --> 01:45:15,809 INTERVENTIONS THAT DON'T 2335 01:45:15,876 --> 01:45:20,914 NECESSARIY ILY NEED TO GO DOWN 2336 01:45:20,981 --> 01:45:24,851 PATH OF INTERVENTION BEHAVIORAL 2337 01:45:24,918 --> 01:45:25,686 DEVELOPMENT AND STOP THERE AND 2338 01:45:25,752 --> 01:45:29,923 LEAVE QUESTIONS FOR THE PANEL. 2339 01:45:29,990 --> 01:45:30,457 THANK YOU SO MUCH AGAIN, 2340 01:45:30,524 --> 01:45:37,397 EVERYONE. 2341 01:45:37,464 --> 01:45:40,367 >> THANK YOU, DR. YU. 2342 01:45:40,434 --> 01:45:44,438 TREMENDOUS IMPACT ON THE 2343 01:45:44,504 --> 01:45:47,307 EMOTIONAL AND PSYCHOLOGICAL 2344 01:45:47,374 --> 01:45:48,675 IMPACT OF CAREGIVERS AND 2345 01:45:48,742 --> 01:45:49,676 IMPORTANT CONSIDERATIONS GOING 2346 01:45:49,743 --> 01:45:50,177 FORWARD. 2347 01:45:50,243 --> 01:45:52,145 IF WE CAN HAVE EACH OF OUR 2348 01:45:52,212 --> 01:45:52,879 PANELISTS UP. 2349 01:45:52,946 --> 01:45:54,781 THAT WOULD BE WONDERFUL. 2350 01:45:54,848 --> 01:45:58,318 IS JENNIFER STILL THERE? 2351 01:45:58,385 --> 01:45:59,386 TERRIFIC, THANK YOU FOR ALL 2352 01:45:59,453 --> 01:46:00,320 BEING HERE. 2353 01:46:00,387 --> 01:46:01,221 WE DON'T HAVE A TREMENDOUS 2354 01:46:01,288 --> 01:46:02,222 AMOUNT OF TIME. 2355 01:46:02,289 --> 01:46:04,624 WE HAVE ABOUT 9 MINUTES. 2356 01:46:04,691 --> 01:46:07,828 IF ANYONE HAS QUESTIONS THEY 2357 01:46:07,894 --> 01:46:09,663 WOULD LIKE TO SUBMIT FEEL FREE 2358 01:46:09,730 --> 01:46:11,698 TO DO SO AND THE FEEDBACK BUTTON 2359 01:46:11,765 --> 01:46:13,800 AND THEY'LL COME TO ME TO BE 2360 01:46:13,867 --> 01:46:16,069 ABLE TO SEE YOUR QUESTIONS. 2361 01:46:16,136 --> 01:46:17,904 I'D LIKE TO START WITH JUST 2362 01:46:17,971 --> 01:46:20,841 ASKING DR. YU IF YOU HAVE ANY 2363 01:46:20,907 --> 01:46:25,645 QUESTIONS FOR YOUR FIRST 2364 01:46:25,712 --> 01:46:32,052 SPEAKERS AND FOR OUR SPEAKERS TO 2365 01:46:32,119 --> 01:46:33,787 ASK QUESTIONS FOR DR. YU BEFORE 2366 01:46:33,854 --> 01:46:34,688 I ASK QUESTIONS. 2367 01:46:34,755 --> 01:46:38,759 SOMETIMES YOU DON'T HAVE A 2368 01:46:38,825 --> 01:46:42,095 CHANCE TO SPEAK TO YOUR OTHER 2369 01:46:42,162 --> 01:46:43,597 PANELISTS AND WANTED TO GIVE A 2370 01:46:43,663 --> 01:46:45,298 CHANCE TO SPEAK TO EACH OTHER. 2371 01:46:45,365 --> 01:46:46,800 >> I HAVE ONE QUESTION FOR 2372 01:46:46,867 --> 01:46:52,572 JENNIFER, SPECIFICALLY, THIS IS 2373 01:46:52,639 --> 01:46:55,108 IS SOMETHING WHERE LET'S SAY WE 2374 01:46:55,175 --> 01:46:57,344 DEVELOP THE INTERVENTIONS 2375 01:46:57,410 --> 01:46:59,980 SPECIFICALLY GEARED AT 2376 01:47:00,046 --> 01:47:01,648 SUPPORTING PARENTS OR SIBLINGS 2377 01:47:01,715 --> 01:47:03,583 AND SAY WE KNOW THEY'RE 2378 01:47:03,650 --> 01:47:05,085 EFFECTIVE OR EFFICACIOUS. 2379 01:47:05,152 --> 01:47:09,189 WHAT DO YOU THINK IS THE RIGHT 2380 01:47:09,256 --> 01:47:14,127 TIME TO START IMPLEMENTING? 2381 01:47:14,194 --> 01:47:16,463 WHEN WE TALKED TO CAREGIVERS ON 2382 01:47:16,530 --> 01:47:18,465 THE ADVISORY BOARD THEY SAY AS 2383 01:47:18,532 --> 01:47:21,168 SOON AS POSSIBLE BUT FROM A 2384 01:47:21,234 --> 01:47:23,737 CLINICAL PERSPECTIVE THE FIRST 2385 01:47:23,804 --> 01:47:26,373 YEAR OR TWO IS SO -- THERE'S SO 2386 01:47:26,439 --> 01:47:28,575 MUCH GOING ON. 2387 01:47:28,642 --> 01:47:30,777 AND OBVIOUSLY WE HAVE TO FIGURE 2388 01:47:30,844 --> 01:47:37,417 THAT OUT BUT I'D BE INTERESTED 2389 01:47:37,484 --> 01:47:42,055 IN THE PERSPECTIVE. 2390 01:47:42,122 --> 01:47:44,591 >> I WOULD ARGUE IT'S RELATIVE 2391 01:47:44,658 --> 01:47:45,559 TO THE DISEASE THE MEDICALLY 2392 01:47:45,625 --> 01:47:46,493 COMPLEX CHILD HAS. 2393 01:47:46,560 --> 01:47:48,762 MY SON'S WAS PROGRESSIVE IN 2394 01:47:48,829 --> 01:47:50,797 NATURE AND DIAGNOSED AT 15 2395 01:47:50,864 --> 01:47:52,933 MONTHS OLD AND PROBABLY SEEMED 2396 01:47:52,999 --> 01:47:54,868 LIKE A TYPICAL 15-MONTH-OLD AT 2397 01:47:54,935 --> 01:47:58,171 THAT POINT THOUGH HE HAD A RARE 2398 01:47:58,238 --> 01:47:59,039 DISEASE HE WASN'T SHOWING EIGHT 2399 01:47:59,105 --> 01:48:00,640 OF THE SYMPTOMS. 2400 01:48:00,707 --> 01:48:01,808 WE GOT THE DIAGNOSIS AND AT THAT 2401 01:48:01,875 --> 01:48:06,880 POINT I NEEDED SOME OF THOSE 2402 01:48:06,947 --> 01:48:08,215 INTERVENTIONS TO, FOR EXAMPLE, 2403 01:48:08,281 --> 01:48:08,982 HIS OLDER BROTHER WAS FIVE AT 2404 01:48:09,049 --> 01:48:09,549 THE TIME. 2405 01:48:09,616 --> 01:48:11,284 HOW DO I INTRODUCE THE CONCEPT 2406 01:48:11,351 --> 01:48:13,453 OF WHAT IS GOING ON WITH HIS 2407 01:48:13,520 --> 01:48:16,923 BROTHER TO HIM AND HOW IS THAT 2408 01:48:16,990 --> 01:48:19,726 RELATIVE TO THEN GO ON TO HAVE 2409 01:48:19,793 --> 01:48:21,428 ANOTHER CHILD AND ANOTHER THING 2410 01:48:21,494 --> 01:48:23,563 AND ANOTHER SEFT INTERVENTION 2411 01:48:23,630 --> 01:48:26,132 COULD HAVE BEEN USEFUL TO MY OWN 2412 01:48:26,199 --> 01:48:27,667 MENTAL HEALTH AND HOW TO 2413 01:48:27,734 --> 01:48:31,872 INTRODUCE IT TO THE YOUNGER S 2414 01:48:31,938 --> 01:48:33,306 SIBLING AND HOW TO THINK ABOUT 2415 01:48:33,373 --> 01:48:38,178 AND MY HUSBAND AND I ARE WELL 2416 01:48:38,245 --> 01:48:39,546 SKILLED AT WHAT I CALL 2417 01:48:39,613 --> 01:48:42,148 DISCOVERING MY OWN PALLIATIVE 2418 01:48:42,215 --> 01:48:43,650 VOICE INTERNALLY AND CAME TO IT 2419 01:48:43,717 --> 01:48:43,917 NATURALLY. 2420 01:48:43,984 --> 01:48:45,252 IT'S NOT THE CASE FOR MANY 2421 01:48:45,318 --> 01:48:46,987 PARENTS AND FOR THEM IT'S THE 2422 01:48:47,053 --> 01:48:48,288 INTERVENTIONS ALONG THE PATH 2423 01:48:48,355 --> 01:48:49,956 THAT BUILD THAT MUSCLE AND SO IT 2424 01:48:50,023 --> 01:48:52,092 MAY BE THAT THEY DON'T HAVE TO 2425 01:48:52,158 --> 01:48:53,894 BE SO FREQUENT BUT THEY NEED TO 2426 01:48:53,960 --> 01:48:56,463 BE CONSISTENT AND THE IDEA OF 2427 01:48:56,529 --> 01:48:57,297 ACCEPTING THAT INTERVENTION 2428 01:48:57,364 --> 01:48:57,998 NEEDS TO BE THERE. 2429 01:48:58,064 --> 01:49:01,368 YOU HEARD UP MY STORY IT'S 2430 01:49:01,434 --> 01:49:03,103 REMARKABLE TO ME SEE SPECIALLY 2431 01:49:03,169 --> 01:49:06,072 GIVEN WHERE I LIVE THAT WE WERE 2432 01:49:06,139 --> 01:49:07,407 NEVER REFERRED TO PALLIATIVE 2433 01:49:07,474 --> 01:49:12,779 CARE UNTIL WE WERE BASICALLY IN 2434 01:49:12,846 --> 01:49:15,215 A CRISIS. 2435 01:49:15,282 --> 01:49:16,950 IN THE CRISIS THE PARENT IS 2436 01:49:17,017 --> 01:49:19,519 FOCUSSING ON SO MANY THINGS. 2437 01:49:19,586 --> 01:49:20,754 THE CAPACITY TO ABSORB WHAT IS 2438 01:49:20,820 --> 01:49:22,589 BEING PUT IN FRONT OF THEM IS 2439 01:49:22,656 --> 01:49:32,966 PROBABLY LIMITED. 2440 01:49:35,368 --> 01:49:37,904 >> DO YOU HAVE A QUESTION FOR 2441 01:49:37,971 --> 01:49:38,371 JUSTIN? 2442 01:49:38,438 --> 01:49:41,908 >> I'VE BEEN CONSUMED WITH 2443 01:49:41,975 --> 01:49:46,579 CHILDREN WITH S&Is AND THERE'S 2444 01:49:46,646 --> 01:49:52,218 A 2445 01:49:52,285 --> 01:49:54,587 PRODUCT TO SUPPORT THEM BUT DOES 2446 01:49:54,654 --> 01:49:57,257 THE ANTICIPATORY GUIDANCE 2447 01:49:57,324 --> 01:49:58,091 PARTICULARLY AROUND THE 2448 01:49:58,158 --> 01:50:00,126 DIFFERENT INFLECTION POINTS A 2449 01:50:00,193 --> 01:50:01,728 FAMILY MAY BE EXPERIENCING AND 2450 01:50:01,795 --> 01:50:08,034 ONE THAT IS PREDICTABLE IN MANY 2451 01:50:08,101 --> 01:50:09,202 DISEASES, HOW MUCH IS THERE 2452 01:50:09,269 --> 01:50:10,003 RESEARCH BEYOND HOW MUCH IT 2453 01:50:10,070 --> 01:50:16,343 CHANGE THE FAMILY AND 2454 01:50:16,409 --> 01:50:16,643 CAREGIVERS? 2455 01:50:16,710 --> 01:50:20,580 THERE WAS LITTLE KNOWN ABOUT MY 2456 01:50:20,647 --> 01:50:24,317 SON'S DISEASE 1966 AND THE 2457 01:50:24,384 --> 01:50:25,618 INTERNET WAS NOT THERE SO HAVE 2458 01:50:25,685 --> 01:50:28,188 FACEBOOK TO LEAN OB AND I 2459 01:50:28,254 --> 01:50:29,089 REMEMBER THINKING IF I ONLY KNEW 2460 01:50:29,155 --> 01:50:30,256 A PATH. 2461 01:50:30,323 --> 01:50:31,725 FAMILIES ALL THE TIME SAY WHAT 2462 01:50:31,791 --> 01:50:33,793 TO EXPECT WHEN YOU'RE EXPECTING, 2463 01:50:33,860 --> 01:50:35,261 THERE'S NO BOOK. 2464 01:50:35,328 --> 01:50:36,663 IS THERE ANY RESEARCH GOING ON 2465 01:50:36,730 --> 01:50:42,402 THAT SAYS IF WE PROVIDE THIS 2466 01:50:42,469 --> 01:50:45,672 GUIDANCE -- 2467 01:50:45,739 --> 01:50:46,973 >> THERE'S SPECIFIC RESEARCH IN 2468 01:50:47,040 --> 01:50:49,075 HOW IT AFFECT THE MEASURES OF 2469 01:50:49,142 --> 01:50:50,577 MENTAL HEALTH. 2470 01:50:50,643 --> 01:50:52,979 I DON'T KNOW THAT'S HAPPENING. 2471 01:50:53,046 --> 01:50:58,051 THINK IT'S HUGE AND SOMETHING TO 2472 01:50:58,118 --> 01:50:59,919 LOOK AT. 2473 01:50:59,986 --> 01:51:02,455 AND WE'VE LOOKED AT THIS AND IN 2474 01:51:02,522 --> 01:51:05,492 THE NICU SETTING AND THERE'S 2475 01:51:05,558 --> 01:51:07,961 UNCERTAINTIES IN THE YEAR OF 2476 01:51:08,028 --> 01:51:09,562 SEVERE NEUROLOGICAL IMPAIRMENT. 2477 01:51:09,629 --> 01:51:12,999 LIKE WHAT ARE THE COMMUNICATIONS 2478 01:51:13,066 --> 01:51:14,401 AND WHAT DO WE THINK OR HOW DO 2479 01:51:14,467 --> 01:51:16,636 WE THINK IT COULD BE BETTER. 2480 01:51:16,703 --> 01:51:19,906 I'M NOT AWARE BESIDES THE 2481 01:51:19,973 --> 01:51:20,473 QUALITATIVE REPORTS. 2482 01:51:20,540 --> 01:51:24,377 I'M NOT REALLY AWARE OF ANYTHING 2483 01:51:24,444 --> 01:51:26,046 CLEARLY DEMONSTRATING OR 2484 01:51:26,112 --> 01:51:31,618 DESCRIBING HOW MENTAL HEALTH 2485 01:51:31,684 --> 01:51:39,526 CHANGES OVER TIME AND I DIDN'T 2486 01:51:39,592 --> 01:51:41,061 FEEL LIKE A COMMUNICATION 2487 01:51:41,127 --> 01:51:42,796 STANDPOINT WE DIDN'T TAKE A LOT 2488 01:51:42,862 --> 01:51:44,764 FROM ADULT PALLIATIVE CARE AND 2489 01:51:44,831 --> 01:51:46,566 TRIED TO APPLY IT. 2490 01:51:46,633 --> 01:51:49,469 WE CAN ADVANCE THE COMMUNICATION 2491 01:51:49,536 --> 01:51:50,637 SCIENCE BY THINKING WHAT WE HAVE 2492 01:51:50,703 --> 01:51:54,507 TO OFFER AND THE CONTEXTS ARE 2493 01:51:54,574 --> 01:51:56,576 DIFFERENT AND THERE ARE WAYS TO 2494 01:51:56,643 --> 01:52:00,313 STUDY THIS MORE RIGOROUSLY AND 2495 01:52:00,380 --> 01:52:01,314 INFORM NOT HOW JUST 2496 01:52:01,381 --> 01:52:03,917 COMMUNICATION SPECIALISTS DEAL 2497 01:52:03,983 --> 01:52:08,054 WITH FAMILIES BUT ETCETERA. 2498 01:52:08,121 --> 01:52:12,926 IF ANYONE FROM THE CALL THINK 2499 01:52:12,992 --> 01:52:15,995 JUSTIN YOU'RE MISSING THIS FEEL 2500 01:52:16,062 --> 01:52:19,099 FREE TO JUMP IN. 2501 01:52:19,165 --> 01:52:22,135 >> WE HAVE A QUESTION FROM THE 2502 01:52:22,202 --> 01:52:23,470 VIDEOCAST AND THAT IS AS 2503 01:52:23,536 --> 01:52:25,205 CLINICIANS IT CAN BE DIFFICULT 2504 01:52:25,271 --> 01:52:27,040 TO GET REIMBURSED OR HAVE 2505 01:52:27,107 --> 01:52:29,008 FUNDING TO SUPPORT CARING FOR 2506 01:52:29,075 --> 01:52:30,176 CAREGIVERS OR SIBLINGS. 2507 01:52:30,243 --> 01:52:35,915 CAN YOU SPEAK TO HOW RESEARCH 2508 01:52:35,982 --> 01:52:38,518 TRIAL INTERVENTIONS CAN PROVIDE 2509 01:52:38,585 --> 01:52:39,252 A BRIDGE TO THAT SUPPORT? 2510 01:52:39,319 --> 01:52:41,521 ANY TAKERS? 2511 01:52:41,588 --> 01:52:42,489 WOULD EITHER OF YOU LIKE TO GO 2512 01:52:42,555 --> 01:52:49,829 FIRST? 2513 01:52:49,896 --> 01:52:54,801 >> I CAN OFFER A STAB BUT IT'S A 2514 01:52:54,868 --> 01:52:55,702 GREAT QUESTION AND INTERROGATE 2515 01:52:55,768 --> 01:52:57,904 THE WHOLE SYMPTOM. 2516 01:52:57,971 --> 01:53:00,273 IT'S A SYSTEM MADE UP BY PEOPLE. 2517 01:53:00,340 --> 01:53:01,207 WE CAN QUESTION IT AND MAKE SOME 2518 01:53:01,274 --> 01:53:06,179 WAVES. 2519 01:53:06,246 --> 01:53:08,748 DR. WIENER AND I WERE PART OF A 2520 01:53:08,815 --> 01:53:09,916 SIBLING RESEARCH SUMMIT IN 2521 01:53:09,983 --> 01:53:12,452 NOVEMBER AND THE SAME QUESTION 2522 01:53:12,519 --> 01:53:17,357 GOT BROUGHT UP AND I THINK ABOUT 2523 01:53:17,423 --> 01:53:19,159 WAYS WE CAN OFFER SERVICES AND 2524 01:53:19,225 --> 01:53:21,995 SUPPORT IN THE PLACES WHERE 2525 01:53:22,061 --> 01:53:23,563 SIBLINGS MOST OFTEN RESIDE. 2526 01:53:23,630 --> 01:53:26,799 HAVE WE LOOKED AT THOSE 2527 01:53:26,866 --> 01:53:28,468 COMMUNITY RESOURCES LIKE 2528 01:53:28,535 --> 01:53:29,869 INTEGRATIVE MENTAL HEALTH IN THE 2529 01:53:29,936 --> 01:53:31,604 PRIMARY CARE SETTING, THE 2530 01:53:31,671 --> 01:53:33,940 PRIMARY CARE PEDIATRICIAN OR 2531 01:53:34,007 --> 01:53:37,977 NURSE PRACTITIONER ASKING HOW 2532 01:53:38,044 --> 01:53:43,483 THAT KID IS DOING SCHOOL NURSES 2533 01:53:43,550 --> 01:53:45,618 SUPPORTING CHILDREN IN THEIR 2534 01:53:45,685 --> 01:53:45,919 ENVIRONMENT. 2535 01:53:45,985 --> 01:53:49,689 I THINK THERE ARE -- SO I THINK 2536 01:53:49,756 --> 01:53:51,991 IT CAN BE HARD BUT WE DON'T 2537 01:53:52,058 --> 01:53:54,160 THROW UP OUR HANDS AND SAY WE 2538 01:53:54,227 --> 01:53:57,030 CAN OUTSIDE THE BOX IN THE NEXT 2539 01:53:57,096 --> 01:54:00,533 WAVE OF PEDIATRIC PALLIATIVE 2540 01:54:00,600 --> 01:54:03,336 CARE RESEARCH AND WHY IT'S THE 2541 01:54:03,403 --> 01:54:09,342 PRIMACY OF PARTNERING WITH 2542 01:54:09,409 --> 01:54:11,778 ORGANIZATIONS SO CLOSELY 2543 01:54:11,844 --> 01:54:12,612 CONNECTED TO FAMILIES WE CAN 2544 01:54:12,679 --> 01:54:15,782 FIND OUT THE BEST WAYS TO 2545 01:54:15,848 --> 01:54:17,016 SUPPORT THEM. 2546 01:54:17,083 --> 01:54:20,920 I MAY NOT BE THE PERSON 2547 01:54:20,987 --> 01:54:24,757 PROVIDING THE SUPPORT BUT MAY BE 2548 01:54:24,824 --> 01:54:28,094 OPENING THE QUESTIONS FOR THE 2549 01:54:28,161 --> 01:54:31,764 PERSON TO HELP ME CONNECT THEM 2550 01:54:31,831 --> 01:54:33,633 TO RESOURCES IN THEIR COMMUNITY. 2551 01:54:33,700 --> 01:54:37,804 I WISH I HAD A MAGIC WAND BUT I 2552 01:54:37,870 --> 01:54:40,173 WE NEED TO START THE 2553 01:54:40,240 --> 01:54:42,775 CONVERSATION AND RE-IMAGINE 2554 01:54:42,842 --> 01:54:43,643 WHAT'S POSSIBLE. 2555 01:54:43,710 --> 01:54:53,019 >> ANY OTHER TAKERS? 2556 01:54:53,086 --> 01:54:56,489 THIS IS WHERE WE NEED TO WEIGH 2557 01:54:56,556 --> 01:54:59,659 THE PROS AND CONS OF CONDUCTING 2558 01:54:59,726 --> 01:55:03,329 A SUPER RIGOROUS CLINICAL TRIAL 2559 01:55:03,396 --> 01:55:06,132 VERSUS LEANING MORE TOWARDS 2560 01:55:06,199 --> 01:55:07,700 PRAGMATIC ALMOST IMPLEMENTATION 2561 01:55:07,767 --> 01:55:09,836 FOCUSSED RESEARCH. 2562 01:55:09,902 --> 01:55:12,605 AND I THINK -- WE'VE ALWAYS HAVE 2563 01:55:12,672 --> 01:55:14,707 A DEARTH OF PEDIATRIC CARE 2564 01:55:14,774 --> 01:55:15,008 SPECIALISTS. 2565 01:55:15,074 --> 01:55:18,778 PART OF ME WANTS TO FOCUS FUTURE 2566 01:55:18,845 --> 01:55:21,247 TRIAL WORK ON TESTING 2567 01:55:21,314 --> 01:55:23,616 INTERVENTION ARE THINGS 2568 01:55:23,683 --> 01:55:25,451 BASICALLY SKILLS WHERE ANY 2569 01:55:25,518 --> 01:55:29,555 CLINICIAN THAT WILL PROVIDE 2570 01:55:29,622 --> 01:55:32,292 PEDIATRIC PALLIATIVE CARE CAN GO 2571 01:55:32,358 --> 01:55:39,332 TO THE ROUTINE PRACTICE AND OUR 2572 01:55:39,399 --> 01:55:41,968 HOPE IS ALL THE WORK BEING DONE 2573 01:55:42,035 --> 01:55:44,504 BY THE PEOPLE PRESENTING CAN BE 2574 01:55:44,570 --> 01:55:48,207 SEEN AS HERE ARE WAYS TO FILL UP 2575 01:55:48,274 --> 01:55:51,577 MY TOOLBOX AND THAT GOES WITH 2576 01:55:51,644 --> 01:55:53,179 FURTHER EXPANDING AND 2577 01:55:53,246 --> 01:55:58,284 FORMALIZING THE PROTOCOLS FOR 2578 01:55:58,351 --> 01:55:58,818 PEDIATRIC PALLIATIVE CARE 2579 01:55:58,885 --> 01:56:01,020 EDUCATION SPECIFICALLY. 2580 01:56:01,087 --> 01:56:05,458 >> ALONG WITH THE PAYMENT ISSUE 2581 01:56:05,525 --> 01:56:06,492 WE KNOW THAT NOT ALL PALLIATIVE 2582 01:56:06,559 --> 01:56:10,163 CARE SERVICES HAVE A FORMAL 2583 01:56:10,229 --> 01:56:11,831 PROCESS FOR ASSESSING CAREGIVER 2584 01:56:11,898 --> 01:56:14,600 NEEDS, SIBLING NEEDS AS WE'VE 2585 01:56:14,667 --> 01:56:15,435 HEARD. 2586 01:56:15,501 --> 01:56:16,602 BOTH SIBLINGS AND CAREGIVERS CAN 2587 01:56:16,669 --> 01:56:25,611 FALL THROUGH THE CRACKS. 2588 01:56:25,678 --> 01:56:26,746 ESPECIALLY IN BEREAVEMENT. 2589 01:56:26,813 --> 01:56:28,281 I KNOW WE DIDN'T HAVE A CHANCE 2590 01:56:28,348 --> 01:56:30,550 TO REALLY BE ABLE TO ADDRESS 2591 01:56:30,616 --> 01:56:32,652 THAT AND WE DIDN'T HAVE A FORMAL 2592 01:56:32,719 --> 01:56:35,321 TALK IN THAT BUT WONDERING IF 2593 01:56:35,388 --> 01:56:37,957 YOU CAN EACH OF YOU SAY A FEW 2594 01:56:38,024 --> 01:56:40,426 WORDS ABOUT THAT IMPACT AND 2595 01:56:40,493 --> 01:56:45,698 PERHAPS MAYBE VOON THI -- EVEN 2596 01:56:45,765 --> 01:56:49,335 TIMING NOT JUST REIMBURSEMENT 2597 01:56:49,402 --> 01:56:50,536 ISSUE. 2598 01:56:50,603 --> 01:56:56,175 JENNIFER YOU BEAUTIFULLY TALKED 2599 01:56:56,242 --> 01:57:00,646 ABOUT ISABELLE AND NOAH'S NEEDS 2600 01:57:00,713 --> 01:57:02,248 AND THINK WITH THE BEREAVEMENT 2601 01:57:02,315 --> 01:57:03,950 ISSUE AND HOW TO DO BETTER? 2602 01:57:04,016 --> 01:57:05,218 >> BEREAVEMENT IN MY EXPERIENCE 2603 01:57:05,284 --> 01:57:10,590 IN THE MEDICAL COMMUNITY AND FOR 2604 01:57:10,656 --> 01:57:15,661 MY FAMILY THERE'S A SHORT PERIOD 2605 01:57:15,728 --> 01:57:16,429 AFTER THE DEATH OF THE CHILD 2606 01:57:16,496 --> 01:57:18,097 WHERE YOU HAVE SUPPORT AND THE 2607 01:57:18,164 --> 01:57:19,832 FAMILY GETS LAUNCHED INTO THIS 2608 01:57:19,899 --> 01:57:21,934 PLACE OF WHERE DO I GO NEXT AND 2609 01:57:22,001 --> 01:57:22,702 COPE WITH THIS AND IT'S ANOTHER 2610 01:57:22,769 --> 01:57:26,239 PROBLEM TO BE SOLVED. 2611 01:57:26,305 --> 01:57:30,777 AGAIN, WHEN YOU LOOK AT THE 2612 01:57:30,843 --> 01:57:32,845 ENTIRE FAMILY UNIT I'M THINKING 2613 01:57:32,912 --> 01:57:36,983 HOW AM I GOING TO PICK MYSELF 2614 01:57:37,049 --> 01:57:38,317 OFF THE FLOOR LET ALONE MY 2615 01:57:38,384 --> 01:57:39,218 HUSBAND AND CHILDREN AND GET 2616 01:57:39,285 --> 01:57:42,522 THEM THE SUPPORT THEY NEED. 2617 01:57:42,588 --> 01:57:44,424 GOING BACK TO THE MONEY QUESTION 2618 01:57:44,490 --> 01:57:45,825 IF WE GO DOWN STREAM AND SAY HOW 2619 01:57:45,892 --> 01:57:48,694 MUCH LESS CAN WE SPEND IF WE 2620 01:57:48,761 --> 01:57:53,032 INVEST NOW VERBS US -- VERSUS 2621 01:57:53,099 --> 01:57:54,333 WAITING TO WHAT WE MIGHT HAVE TO 2622 01:57:54,400 --> 01:57:56,702 SPEND LATER AND I KNOW FROM MY 2623 01:57:56,769 --> 01:57:58,805 EXPERIENCE WE ARE CONSUMERS OF 2624 01:57:58,871 --> 01:58:00,673 EIGHT OF THERAPY IN OUR 2625 01:58:00,740 --> 01:58:03,676 HOUSEHOLD BOTH INDIVIDUALLY AND 2626 01:58:03,743 --> 01:58:09,081 AS A GROUP AND SOME OF THAT IS 2627 01:58:09,148 --> 01:58:11,417 RELATED TO THE LIVED EXPERIENCE 2628 01:58:11,484 --> 01:58:12,552 MY CHILDREN HAVE AND THEIR 2629 01:58:12,618 --> 01:58:13,886 BEREAVEMENT AND HOW WE PROCESS 2630 01:58:13,953 --> 01:58:15,588 IT AND HOW WE ALL SEPARATELY 2631 01:58:15,655 --> 01:58:21,027 PROCESS IT IN DIFFERENT WAYS. 2632 01:58:21,093 --> 01:58:25,898 AND SO I THINK FOR CHILDREN WITH 2633 01:58:25,965 --> 01:58:28,034 PROGRESSIVE DEBILITATING 2634 01:58:28,100 --> 01:58:30,703 DISEASES LIKE MANY S AND Is WE 2635 01:58:30,770 --> 01:58:33,005 NEED TO LOOK AT BEREAVEMENT 2636 01:58:33,072 --> 01:58:37,076 ALONG THE PATH AND LOOK AT THE 2637 01:58:37,143 --> 01:58:37,743 ANTICIPATORY BEREAVEMENT FROM 2638 01:58:37,810 --> 01:58:40,546 THE SIBLING BEREAVEMENT AND WHAT 2639 01:58:40,613 --> 01:58:42,715 ARE THEY MISSING OUT ON AND 2640 01:58:42,782 --> 01:58:45,518 IDENTITY AND EVEN THE IDENTITY 2641 01:58:45,585 --> 01:58:47,820 OF THE SIBLING CHANGES. 2642 01:58:47,887 --> 01:58:50,490 I'M FORTUNATE AND IT WAS 2643 01:58:50,556 --> 01:58:52,458 SOMEWHAT STRATEGIC IN HAVING A 2644 01:58:52,525 --> 01:58:55,461 SECOND OR THIRD CHILD BECAUSE I 2645 01:58:55,528 --> 01:58:57,230 KNEW I DIDN'T WANT MY CHILD TO 2646 01:58:57,296 --> 01:59:00,032 BE LEFT AS AN ONLY CHILD IT WAS 2647 01:59:00,099 --> 01:59:01,534 A CONSCIOUS DECISION ON MY PART 2648 01:59:01,601 --> 01:59:04,103 BUT THE IDENTITY MY SON CARRIES 2649 01:59:04,170 --> 01:59:05,404 WITH THAT IS VERY DIFFERENT THAN 2650 01:59:05,471 --> 01:59:06,205 THE IDENTITY MY DAUGHTER 2651 01:59:06,272 --> 01:59:09,909 CARRIES. 2652 01:59:09,976 --> 01:59:12,979 I THINK WE DO HAVE TO ADDRESS 2653 01:59:13,045 --> 01:59:14,847 THE BEREAVEMENT AND WE'RE TEN 2654 01:59:14,914 --> 01:59:19,719 YEARS OUT AND SOME OF THESE 2655 01:59:19,785 --> 01:59:21,554 MANIFESTATIONS HAVE COME TO BEAR 2656 01:59:21,621 --> 01:59:23,422 IN THE LAST FIVE YEARS AFTER THE 2657 01:59:23,489 --> 01:59:25,157 DEATH OF MY CHILD. 2658 01:59:25,224 --> 01:59:26,959 SO IT DOESN'T HAVE A SUCCINCT 2659 01:59:27,026 --> 01:59:31,797 TIME LINE. 2660 01:59:31,864 --> 01:59:36,502 >> THINK OF THE HOSPICE SERVICES 2661 01:59:36,569 --> 01:59:38,170 PROVIDED MANY TIMES AND OFTEN 2662 01:59:38,237 --> 01:59:42,408 IT'S WAY PAST WHEN IMPACT HITS 2663 01:59:42,475 --> 01:59:46,646 AND CHANGES OVER ONE'S LIFE 2664 01:59:46,712 --> 01:59:46,946 TRAJECTORY. 2665 01:59:47,013 --> 01:59:49,081 ANY OTHER THOUGHTS ABOUT 2666 01:59:49,148 --> 01:59:51,884 BEREAVEMENT CARE AND FUTURE 2667 01:59:51,951 --> 01:59:52,184 DIRECTIONS? 2668 01:59:52,251 --> 01:59:55,388 >> JUSTIN, WOULD YOU LIKE TO 2669 01:59:55,454 --> 01:59:58,624 WEIGH IN? 2670 01:59:58,691 --> 02:00:01,861 I THINK JENNIFER SUMMED IT UP 2671 02:00:01,928 --> 02:00:02,795 BEAUTIFULLY. 2672 02:00:02,862 --> 02:00:06,232 THE ONLY THING I WOULD ADD IS 2673 02:00:06,299 --> 02:00:08,768 THE EMPHASIS ON BEREAVEMENT 2674 02:00:08,834 --> 02:00:10,136 INTERVENTION AND SUPPORT ACROSS 2675 02:00:10,202 --> 02:00:11,203 THE CHILD'S LIFE COURSE AND 2676 02:00:11,270 --> 02:00:13,506 THINKING ABOUT THE POINTS OF 2677 02:00:13,573 --> 02:00:19,545 GRIEF AND THAT ANTICIPATORY 2678 02:00:19,612 --> 02:00:22,415 GRIEF FITS IN WITH THE NICHD 2679 02:00:22,481 --> 02:00:26,218 EMPHASIS ON PREVENTIVE CARE. 2680 02:00:26,285 --> 02:00:28,821 I THINK IT COULD CROSS DISEASE 2681 02:00:28,888 --> 02:00:31,457 STATES AND ACROSS FAMILY MEMBERS 2682 02:00:31,524 --> 02:00:32,925 BUT THAT EMPHASIS COULD BE 2683 02:00:32,992 --> 02:00:36,128 HOUSED THERE. 2684 02:00:36,195 --> 02:00:37,496 >> IT IS TIME FOR A BREAK. 2685 02:00:37,563 --> 02:00:39,432 I THINK EVERYONE'S PROBABLY 2686 02:00:39,498 --> 02:00:40,633 READY FOR THAT. 2687 02:00:40,700 --> 02:00:42,802 THE COURAGEOUS PARENT NETWORK 2688 02:00:42,868 --> 02:00:45,371 FOR PEOPLE NOT FAMILIAR WITH IT, 2689 02:00:45,438 --> 02:00:47,406 PLEASE LOOK IT UP. 2690 02:00:47,473 --> 02:00:49,275 IT'S PHENOMENAL. 2691 02:00:49,342 --> 02:00:51,277 SUCH RICH RESOURCES. 2692 02:00:51,344 --> 02:00:53,446 I CAN'T THANK YOU ENOUGH, EACH 2693 02:00:53,512 --> 02:00:55,581 OF YOU FOR YOUR POWERFUL AND 2694 02:00:55,648 --> 02:00:56,749 INFORMATIVE AND IMPORTANT 2695 02:00:56,816 --> 02:00:57,083 PRESENTATIONS. 2696 02:00:57,149 --> 02:00:58,985 WE'LL GO TO BREAK NOW AND COME 2697 02:00:59,051 --> 02:01:03,856 BACK AT 2:10 AND THANK YOU ALL. 2698 02:01:03,923 --> 02:01:08,995 >> GOOD AFTERNOON AND WELCOME 2699 02:01:09,061 --> 02:01:10,329 BACK. 2700 02:01:10,396 --> 02:01:20,906 I'M MICHAELA STEFAN AND I WORK 2701 02:01:20,973 --> 02:01:22,675 AT THE NHLBI. 2702 02:01:31,751 --> 02:01:36,756 I'LL MODERATE THE NEXT SESSION 2703 02:01:36,822 --> 02:01:39,225 ETHICAL CHALLENGE CANS OF 2704 02:01:39,291 --> 02:01:39,992 PEDIATRIC PALLIATIVE CARE 2705 02:01:40,059 --> 02:01:42,595 RESEARCH AND ADDS YOU KNOW 2706 02:01:42,662 --> 02:01:43,829 ADVANCES IN SCIENCE AND 2707 02:01:43,896 --> 02:01:45,598 TECHNOLOGY AND RECOGNITION OF 2708 02:01:45,665 --> 02:01:50,736 ETHICS AS A FOUNDATION FOR 2709 02:01:50,803 --> 02:01:52,038 CLINICAL PRACTICE OF RIGHTS AND 2710 02:01:52,104 --> 02:01:54,073 SOCIAL CHANGES RELATED TO HEALTH 2711 02:01:54,140 --> 02:01:55,241 HAVE STRONGLY INFLUENCED THE 2712 02:01:55,307 --> 02:02:00,613 APPROACH TO MANAGEMENT OF 2713 02:02:00,680 --> 02:02:01,681 PATIENT ILLNESSES ESPECIALLY 2714 02:02:01,747 --> 02:02:12,291 WITH THOSE ADVANCED DISEASES IN 2715 02:02:16,896 --> 02:02:27,039 PEDIATR 2716 02:02:39,752 --> 02:02:42,788 PEDIATRICS YOU CAN GO CHECK OUT 2717 02:02:42,855 --> 02:02:44,490 THE SPEAKER BIOS BY GOING TO THE 2718 02:02:44,557 --> 02:02:46,025 CONFERENCE WEBSITE AND SEND 2719 02:02:46,092 --> 02:02:46,859 QUESTIONS WHEN YOU HAVE THEM 2720 02:02:46,926 --> 02:02:54,266 THROUGH THE VIDEOCAST LINK. 2721 02:02:54,333 --> 02:02:55,901 OUR FIRST SPEAKER IS DR 2722 02:02:55,968 --> 02:03:00,740 DR. MOYNAHAN AT BOSTON 2723 02:03:00,806 --> 02:03:04,577 CHILDREN'S HOSPITAL IN BOSTON , 2724 02:03:04,643 --> 02:03:04,910 MASSACHUSETTS. 2725 02:03:04,977 --> 02:03:06,245 SHE'S DONE IMPORTANT RESEARCH 2726 02:03:06,312 --> 02:03:10,683 REGARDING DECISION MAKES AND AND 2727 02:03:10,750 --> 02:03:18,457 OF LIFE CARE AND FACTORS WITH 2728 02:03:18,524 --> 02:03:21,627 QUALITY OF LIFE AND PEDIATRIC 2729 02:03:21,694 --> 02:03:22,962 INTENSIVE CARE. 2730 02:03:23,028 --> 02:03:27,433 SHE'S PRESENT ETHICAL DECISION 2731 02:03:27,500 --> 02:03:32,738 MAKING WITH PICU AND NICU. 2732 02:03:32,805 --> 02:03:37,910 >> THANK YOU FOR THE 2733 02:03:37,977 --> 02:03:40,746 INTRODUCTION AND THANKS FOR THE 2734 02:03:40,813 --> 02:03:41,714 INVITE. 2735 02:03:41,781 --> 02:03:44,016 I TRAINED IN AUSTRALIA BUT 2736 02:03:44,083 --> 02:03:47,887 CURRENTLY WORK IN BOSTON IN THE 2737 02:03:47,953 --> 02:03:50,022 CARD 2738 02:03:50,089 --> 02:03:52,691 CARDIAC NICU AND GIVE 2739 02:03:52,758 --> 02:03:55,461 PERSPECTIVES RELATED TO DECISION 2740 02:03:55,528 --> 02:03:55,694 MAKING. 2741 02:03:55,761 --> 02:03:59,465 THESE VIEWS ARE MY ONLY BUT MANY 2742 02:03:59,532 --> 02:04:00,733 HELPED SHAPE THEM OVER THE 2743 02:04:00,800 --> 02:04:04,136 YEARS. 2744 02:04:04,203 --> 02:04:07,139 I'LL FIRST OUTLINE THE 2745 02:04:07,206 --> 02:04:09,208 CHALLENGES TO DECISION MAKES IN 2746 02:04:09,275 --> 02:04:11,210 PEDIATRIC CRITICAL CARE WITH 2747 02:04:11,277 --> 02:04:13,379 TECHNOLOGY APPLICATION LIKE 2748 02:04:13,445 --> 02:04:18,884 MEMBRANE OXYGENATION OR ECMO. 2749 02:04:18,951 --> 02:04:21,453 IT UNDER SCORES WHY THIS AREA 2750 02:04:21,520 --> 02:04:22,321 DEMANDS ATTENTION AND WHY WE 2751 02:04:22,388 --> 02:04:23,956 NEED TO SHIFT OUR THINKING. 2752 02:04:24,023 --> 02:04:29,428 THEN I'LL DISCUSS EMERGING 2753 02:04:29,495 --> 02:04:32,965 STRATEGIES ACKNOWLEDGING THE GAP 2754 02:04:33,032 --> 02:04:36,735 I HOPE IT'S A CALL TO BRAIN 2755 02:04:36,802 --> 02:04:39,872 STORM MORE SOLUTION. 2756 02:04:39,939 --> 02:04:42,174 OVER THE PAST 50 YEARS ADVANCES 2757 02:04:42,241 --> 02:04:44,410 IN MEDICAL TECHNOLOGY HAVE LED 2758 02:04:44,476 --> 02:04:47,746 TO REALLY INNOVATIVE WAYS TO 2759 02:04:47,813 --> 02:04:49,181 SUSTAIN THE LIVES OF CHILDREN 2760 02:04:49,248 --> 02:04:54,086 WITH HISTORICALLY LIVE LIMITING 2761 02:04:54,153 --> 02:04:56,088 ILLNESS WITH ALLOCATION OF 2762 02:04:56,155 --> 02:04:56,956 INTENSE RESOURCE ALLOCATION 2763 02:04:57,022 --> 02:04:59,458 ACROSS POPULATIONS AN INITIATION 2764 02:04:59,525 --> 02:05:00,526 OR DISCONTINUATION OF THE 2765 02:05:00,593 --> 02:05:01,093 THERAPIES AT THE INDIVIDUAL 2766 02:05:01,160 --> 02:05:05,231 LEVEL. 2767 02:05:05,297 --> 02:05:08,200 ADDING TO THAT IS RISE PATIENT 2768 02:05:08,267 --> 02:05:10,536 COMPLEXITY IN ILL, AND THE 2769 02:05:10,603 --> 02:05:12,738 PROPORTION OF THOSE WITH 2770 02:05:12,805 --> 02:05:14,773 COMORBIDITIES AND PRIOR ICU 2771 02:05:14,840 --> 02:05:16,742 ADMISSIONS IS INCREASING. 2772 02:05:16,809 --> 02:05:18,744 AND SHOULD OFFER TIME FOR 2773 02:05:18,811 --> 02:05:19,712 ADVANCED DECISION MAKING THIS 2774 02:05:19,778 --> 02:05:20,746 OPPORTUNITY IS OFTEN MISSED 2775 02:05:20,813 --> 02:05:26,051 BECAUSE THE ADVANCEMENT IS OUT 2776 02:05:26,118 --> 02:05:28,587 PACED IN EXPLICIT ETHICAL 2777 02:05:28,654 --> 02:05:28,921 CONSIDERATION. 2778 02:05:28,988 --> 02:05:31,223 ONE IS ECMO. 2779 02:05:31,290 --> 02:05:34,627 IT'S INSTITUTED OR 2780 02:05:34,693 --> 02:05:35,361 CARDIORESPIRATORY FAILURE 2781 02:05:35,427 --> 02:05:38,330 REFRACTORY TO MEDICAL MEASURES 2782 02:05:38,397 --> 02:05:40,733 LIKE VENTILATION AND 2783 02:05:40,799 --> 02:05:44,069 MEDICATIONS. 2784 02:05:44,136 --> 02:05:45,504 ECMO COMPRISES AN EXTERNAL PUMP 2785 02:05:45,571 --> 02:05:51,410 AND OXYGEN RAADE ATED AND THIS 2786 02:05:51,477 --> 02:05:53,946 REQUIRES LARGE TUBES TO CARRY 2787 02:05:54,013 --> 02:05:56,982 BLOOD OUTSIDE THE BODY OUTSIDE 2788 02:05:57,049 --> 02:05:59,618 THE VESSELS AND HIGHLY MORBID. 2789 02:05:59,685 --> 02:06:04,690 THE TECHNOLOGY LIKE ECMO IS NOT 2790 02:06:04,757 --> 02:06:05,991 JUST ADVANCING BUT ITS USE IS 2791 02:06:06,058 --> 02:06:09,194 EXPANDING AND CHANGES AND MANY 2792 02:06:09,261 --> 02:06:10,863 CLINICAL CONTRAINDICATION NO 2793 02:06:10,930 --> 02:06:14,199 LONGER ABSOLUTE OR EVEN RELATIVE 2794 02:06:14,266 --> 02:06:18,637 THESE DAYS WITH USE IN 2795 02:06:18,704 --> 02:06:21,440 PREVIOUSLY CONSIDERED TABOO 2796 02:06:21,507 --> 02:06:23,409 CONDITIONS LIKE PREMATURITY AND 2797 02:06:23,475 --> 02:06:26,745 CANCER AND THIS RESULTS IN 2798 02:06:26,812 --> 02:06:30,749 VARIABILITY AT THE STATE AND 2799 02:06:30,816 --> 02:06:31,450 COUNTRY LEVEL. 2800 02:06:31,517 --> 02:06:33,819 SO NOT ONLY DOES THE NEEDLE MOVE 2801 02:06:33,886 --> 02:06:36,155 BETWEEN LOCATIONS AND CHANGES 2802 02:06:36,221 --> 02:06:37,923 OVER TIME, WE ALL CAN'T AGREE ON 2803 02:06:37,990 --> 02:06:46,098 WHAT STANDARD CARE IS. 2804 02:06:46,165 --> 02:06:48,300 MOST PEDIATRIC RESEARCH IS 2805 02:06:48,367 --> 02:06:49,368 RETROSPECTIVE OFTEN REGISTRY 2806 02:06:49,435 --> 02:06:54,239 BASED WITH LIMITED ACCURATE 2807 02:06:54,306 --> 02:06:57,076 COLLECTION OF DATA FROM SOCIAL 2808 02:06:57,142 --> 02:06:58,544 DEMOGRAPHICS EMPHASIZING THE 2809 02:06:58,610 --> 02:07:01,847 IMPORTANCE OF PERSPECTIVE STUDY. 2810 02:07:01,914 --> 02:07:04,249 SOCIETY'S ALSO CHANGED. 2811 02:07:04,316 --> 02:07:12,458 LIFE STRESSORS ARE AT MAXIMAL 2812 02:07:12,524 --> 02:07:14,760 EFFORTS AND FAMILIES HAVE ACCESS 2813 02:07:14,827 --> 02:07:16,762 TO INFORMATION OF VARYING 2814 02:07:16,829 --> 02:07:18,130 QUALITY. 2815 02:07:18,197 --> 02:07:20,766 ECMO WAS SHOWN ON GREY'S ANATOMY 2816 02:07:20,833 --> 02:07:22,234 SO EVERYONE KNOWS WHAT IT IS NOW 2817 02:07:22,301 --> 02:07:23,469 BUT UNLIKELY TO UNDERSTAND WHAT 2818 02:07:23,535 --> 02:07:27,339 IT REALLY IS. 2819 02:07:27,406 --> 02:07:33,412 FOR CPR AND ECMO THERE'S 2820 02:07:33,479 --> 02:07:36,515 UNREALISTIC PORTRAYALS OF 2821 02:07:36,582 --> 02:07:38,617 SURVIVE AND THIS IS A FRAMING. 2822 02:07:38,684 --> 02:07:40,919 THE STUDY FOUND OVER 200 MEDIA 2823 02:07:40,986 --> 02:07:43,522 REFERENCES TO PEDIATRIC ECMO THE 2824 02:07:43,589 --> 02:07:48,560 VAST MAJORITY, ALMOST 95% 2825 02:07:48,627 --> 02:07:50,763 IMPLIED SURVIVAL WHEN IN REAL 2826 02:07:50,829 --> 02:07:53,632 IT'S A HIGHLY INVASIVE LAST 2827 02:07:53,699 --> 02:07:55,067 RESORT OPTION WITH MORTALITY 2828 02:07:55,134 --> 02:07:59,138 AROUND 50% AND SUBSTANTIAL 2829 02:07:59,204 --> 02:07:59,738 MORBID 2830 02:07:59,805 --> 02:08:00,005 MORBIDITY. 2831 02:08:00,072 --> 02:08:02,641 THE SOCIETY AND MEDICAL 2832 02:08:02,708 --> 02:08:04,209 PROFESSIONAL HAS ALSO BECOME 2833 02:08:04,276 --> 02:08:07,279 MEDICALIZED FRAMED AS AVOIDABLE 2834 02:08:07,346 --> 02:08:09,848 AND MOVED TO THE PURVIEW OF 2835 02:08:09,915 --> 02:08:11,083 HEALTH CARE RATHER THAN A 2836 02:08:11,150 --> 02:08:13,118 NORMALIZED SOCIAL EVENT WE WILL 2837 02:08:13,185 --> 02:08:14,653 ALL EXPERIENCE. 2838 02:08:14,720 --> 02:08:19,191 THOUGH CHILDHOOD DEATH IS 2839 02:08:19,258 --> 02:08:20,626 UNDOUBTEDLY A TRAGEDY OUR FOCUS 2840 02:08:20,692 --> 02:08:23,495 ON SURVIVAL COMES AT A COST. 2841 02:08:23,562 --> 02:08:25,230 WE NEED TO THINK ABOUT HOW MUCH 2842 02:08:25,297 --> 02:08:28,067 SUFFERING WE'RE WILLING TO 2843 02:08:28,133 --> 02:08:32,271 ACCEPT FOR THIS LONG TAIL AND 2844 02:08:32,337 --> 02:08:37,342 ECMO IN PARTICULAR STAVES OFF 2845 02:08:37,409 --> 02:08:39,578 BETTER THAN ALL OTHER LIFE 2846 02:08:39,645 --> 02:08:45,284 SUSTAINING AN APE K CAPABILITIE 2847 02:08:45,350 --> 02:08:47,886 DEATH WAS FRAMED AS A NORMAL, 2848 02:08:47,953 --> 02:08:56,795 RELATIONAL SPIRITUAL EVENT 2849 02:08:56,862 --> 02:08:57,563 RATHER THAN HOSPITAL EVENT AND 2850 02:08:57,629 --> 02:09:00,065 DEATH IS NOT A PRODUCT OF VOICE 2851 02:09:00,132 --> 02:09:02,768 BUT INEVITABLE OUTCOME OF 2852 02:09:02,835 --> 02:09:09,608 ILLNESS AND DISEASE. 2853 02:09:09,675 --> 02:09:14,246 WE'RE A PLURALIST SOCIETY AND 2854 02:09:14,313 --> 02:09:15,347 PROTECTING AN INDIVIDUAL'S 2855 02:09:15,414 --> 02:09:19,284 VALUES AT THE EXPENSE OF SOCIETY 2856 02:09:19,351 --> 02:09:24,756 MAY NOT BE SUSTAINABLE. 2857 02:09:24,823 --> 02:09:26,492 STAFF AND COGNITIVE CAPACITY ARE 2858 02:09:26,558 --> 02:09:27,726 VALUABLE AND FINITE AND 2859 02:09:27,793 --> 02:09:29,995 INCREASING PROPORTION OF SOCIETY 2860 02:09:30,062 --> 02:09:31,363 VIEW HEALTH CARE WITH A 2861 02:09:31,430 --> 02:09:32,231 CONSUMER'S LENS. 2862 02:09:32,297 --> 02:09:33,899 WE NEED TO THINK CAREFULLY ABOUT 2863 02:09:33,966 --> 02:09:36,335 HOW WE TARGET RESOURCES IN A WAY 2864 02:09:36,401 --> 02:09:39,705 THAT BOTH RESPECTS AND VALUES 2865 02:09:39,771 --> 02:09:40,739 INDIVIDUALS AND CONSIDERS THE 2866 02:09:40,806 --> 02:09:44,743 GREATER GOOD. 2867 02:09:44,810 --> 02:09:45,677 NAVIGATING THESE GOALS ARE 2868 02:09:45,744 --> 02:09:50,315 CHALLENGED BY THE LEGACY OF 2869 02:09:50,382 --> 02:09:51,150 STRUCTURAL DISCRIMINATION 2870 02:09:51,216 --> 02:09:55,154 DRIVING HEALTH INEQUITY AND SOME 2871 02:09:55,220 --> 02:09:58,257 GROUPS REMAIN UNDER REPRESENTED. 2872 02:09:58,323 --> 02:10:00,759 ETHICALLY SUPPORTED DECISION 2873 02:10:00,826 --> 02:10:02,227 MAKING SHOULD ADVANCE HEALTH 2874 02:10:02,294 --> 02:10:02,661 EQUITY. 2875 02:10:02,728 --> 02:10:05,564 THIS IS TRUE FOR ECMO. 2876 02:10:05,631 --> 02:10:07,833 THE SCOPING REVIEW EXAMINED 2877 02:10:07,900 --> 02:10:12,538 PRACTICE VARIABILITY WITH A LENS 2878 02:10:12,604 --> 02:10:14,006 LOOKING AT SOCIAL DETERMINATES 2879 02:10:14,072 --> 02:10:16,008 OF HEALTH OR OUTCOMES. 2880 02:10:16,074 --> 02:10:18,410 DISAPPOINTINGLY DATA WAS LOW IN 2881 02:10:18,477 --> 02:10:18,644 QUALITY. 2882 02:10:18,710 --> 02:10:24,516 AND 148 ARTICLES STUDIED, 2883 02:10:24,583 --> 02:10:25,918 ETHNICITY OR PAYER VARIABLES. 2884 02:10:25,984 --> 02:10:28,420 THIS REPRESENT THE PROPORTION OF 2885 02:10:28,487 --> 02:10:28,921 PUBLICATION. 2886 02:10:28,987 --> 02:10:31,890 OF THOSE WITH STATISTICAL 2887 02:10:31,957 --> 02:10:32,524 ASSOCIATIONS RESULTS STRONGLY 2888 02:10:32,591 --> 02:10:34,693 FAVORED ADVERSE OUTCOMES OR 2889 02:10:34,760 --> 02:10:39,298 LOWER ECMO UTILIZATION FOR UNDER 2890 02:10:39,364 --> 02:10:40,999 REPRESENTED OR UNDER RESOURCED 2891 02:10:41,066 --> 02:10:42,100 POPULATIONS. 2892 02:10:42,167 --> 02:10:44,102 SO ALL OF THESE REASONS UNDER 2893 02:10:44,169 --> 02:10:45,571 SCORE WHY WE NEED ETHICALLY 2894 02:10:45,637 --> 02:10:48,340 SUPPORTED APPROACHES TO DECISION 2895 02:10:48,407 --> 02:10:49,942 MAKING IN CONTEMPORARY PEDIATRIC 2896 02:10:50,008 --> 02:10:50,609 CRITICAL CARE. 2897 02:10:50,676 --> 02:10:52,544 IT'S ESPECIALLY DISAPPOINTING 2898 02:10:52,611 --> 02:10:54,179 IT'S LACKING. 2899 02:10:54,246 --> 02:10:56,415 THOUGH NOT UNSURPRISINGLY 2900 02:10:56,481 --> 02:10:59,518 CONSIDERING THE POPULATION 2901 02:10:59,585 --> 02:11:01,787 HETEROGENEITY AND SUBJECTIVITY 2902 02:11:01,853 --> 02:11:05,290 IN BURDENS AND OUTCOMES. 2903 02:11:05,357 --> 02:11:08,393 THIS SYSTEMATIC REVIEW IS FROM 2904 02:11:08,460 --> 02:11:11,763 THE ETHICS DOMAIN OF THE P PET 2905 02:11:11,830 --> 02:11:14,132 PROCESS TO PROVIDE A 2906 02:11:14,199 --> 02:11:14,967 COMPREHENSIVE UNDERSTANDING OF 2907 02:11:15,033 --> 02:11:16,201 EXISTING PRACTICAL GUIDANCE ON 2908 02:11:16,268 --> 02:11:21,106 THE USE OF MEDICAL TECHNOLOGY IN 2909 02:11:21,173 --> 02:11:22,140 CHILDREN. 2910 02:11:22,207 --> 02:11:24,343 OVER ALL WE FOUND BROAD SCOPE 2911 02:11:24,409 --> 02:11:26,979 PEDIATRIC SPECIFIC GUIDANCE 2912 02:11:27,045 --> 02:11:29,114 INFORMING PRACTICE. 2913 02:11:29,181 --> 02:11:31,350 SO ON THAT NOTE, I'LL NOW OFFER 2914 02:11:31,416 --> 02:11:33,852 SOME UNIQUE STRATEGIES I'VE BEEN 2915 02:11:33,919 --> 02:11:34,953 LUCKY ENOUGH TO BE A PART OF 2916 02:11:35,020 --> 02:11:37,990 DEVELOPING OR SEEN EMERGING FOR 2917 02:11:38,056 --> 02:11:40,726 THESE TYPES OF COMPLEX DECISIONS 2918 02:11:40,792 --> 02:11:43,929 INVOLVING PARADIGM SHIFTS IN HOW 2919 02:11:43,996 --> 02:11:46,698 THERAPIES ARE MADE. 2920 02:11:46,765 --> 02:11:49,301 FIRST BY ETHICALLY SUPPORTED 2921 02:11:49,368 --> 02:11:50,636 DEFINITIONS OF BENEFICIAL 2922 02:11:50,702 --> 02:11:55,240 THERAPY USE AROUND A GOAL. 2923 02:11:55,307 --> 02:11:56,775 SECOND, BY IMPLEMENTING 2924 02:11:56,842 --> 02:12:04,750 LONGITUDINAL PROCESS BASED 2925 02:12:04,816 --> 02:12:08,787 LONGITUDINAL DECISION MAKING AND 2926 02:12:08,854 --> 02:12:10,289 TRANSPARENCY AROUND INEQUITY AND 2927 02:12:10,355 --> 02:12:12,691 PERSONALIZED PREEMPTIVE 2928 02:12:12,758 --> 02:12:14,393 CONVERSATIONS AND NOVEL 2929 02:12:14,459 --> 02:12:25,003 APPROACHES TO MANAGING CONFLICT. 2930 02:12:25,203 --> 02:12:31,043 CPR REQUIRES PATIENTS AND 2931 02:12:31,109 --> 02:12:31,777 FAMILIES TO ACT. 2932 02:12:31,843 --> 02:12:35,414 OTHER SUPPORT LIKE DIALYSIS OR 2933 02:12:35,480 --> 02:12:37,549 HOME VENTILATION ARE CONSIDERED 2934 02:12:37,616 --> 02:12:39,451 VALUE-BASED DECISIONS AND THIS 2935 02:12:39,518 --> 02:12:40,352 IS THE RECOMMENDATIONS DECISION 2936 02:12:40,419 --> 02:12:42,487 MANY OF MAKING MODEL IN CRITICAL 2937 02:12:42,554 --> 02:12:43,355 CARE. 2938 02:12:43,422 --> 02:12:45,290 AND TRANSPLANT ULTIMATELY 2939 02:12:45,357 --> 02:12:49,461 MEDICAL TEAMS HOLD THE DECISION 2940 02:12:49,528 --> 02:12:51,563 AUTHORITY FOR RESOURCE 2941 02:12:51,630 --> 02:12:52,698 ALLOCATION. 2942 02:12:52,764 --> 02:12:53,899 AND THEY'RE RESOURCE LIMITATION 2943 02:12:53,965 --> 02:12:58,904 WITH AGENCY OVER ITS USE. 2944 02:12:58,970 --> 02:13:02,407 THE PALLIATIVE CARE HAS 2945 02:13:02,474 --> 02:13:07,546 CONSIDERED GOAL-CONCORDANT CARE 2946 02:13:07,612 --> 02:13:08,647 THE HOLY GRAIL AND LOOK AT 2947 02:13:08,714 --> 02:13:09,581 TREATMENT AND OUTCOMES IS NOT 2948 02:13:09,648 --> 02:13:12,117 ONLY A CONCEPT THAT MAKES SENSE 2949 02:13:12,184 --> 02:13:14,219 BUT WIDELY SUPPORTED BY 2950 02:13:14,286 --> 02:13:15,354 PATIENTS, CAREGIVERS, 2951 02:13:15,420 --> 02:13:15,987 CLINICIANS, HEALTH SYSTEMS AND 2952 02:13:16,054 --> 02:13:18,056 PAYERS. 2953 02:13:18,123 --> 02:13:19,925 THE GOAL ORIENTED MEDICINE IS 2954 02:13:19,991 --> 02:13:24,196 STANDARD IN OTHER MEDICAL 2955 02:13:24,262 --> 02:13:25,497 DISCIPLINES TOO. 2956 02:13:25,564 --> 02:13:30,502 ANTIBIOTIC THERAPY IS TO TREAT 2957 02:13:30,569 --> 02:13:31,002 INFECTION. 2958 02:13:31,069 --> 02:13:31,770 AND CANCER SUPPRESSION IS 2959 02:13:31,837 --> 02:13:33,839 STOPPED AND ON THIS BASIS IT'S 2960 02:13:33,905 --> 02:13:37,309 REASONABLE THAT ICU CLINICIANS 2961 02:13:37,376 --> 02:13:46,351 BE MORE EXPLICIT AROUND DEFINING 2962 02:13:46,418 --> 02:13:49,287 USABILITY AND GOALS AND THE 2963 02:13:49,354 --> 02:13:50,856 FIRST PARADIGM SHIFT IS 2964 02:13:50,922 --> 02:13:53,558 ETHICALLY SUPPORTED DEFINITIONS 2965 02:13:53,625 --> 02:13:55,660 OF BENEFICIAL USE BY 2966 02:13:55,727 --> 02:13:56,928 COLLABORATION AND I'LL POINT TWO 2967 02:13:56,995 --> 02:14:00,365 EXAMPLE TO ECMO WHILE TIME 2968 02:14:00,432 --> 02:14:02,868 CONSUMING AND COSTLY RESULTED IN 2969 02:14:02,934 --> 02:14:13,378 HIGHLY VARIABLE OUTCOMES. 2970 02:14:25,891 --> 02:14:28,727 THERAPIES DEEMED FEASIBLE FOR A 2971 02:14:28,794 --> 02:14:32,097 GOAL FOR RESPIRATORY SUPPORT AND 2972 02:14:32,164 --> 02:14:35,233 ALIGNS FOR PATIENT OR IS 2973 02:14:35,300 --> 02:14:37,202 SURROGATE DECISION MAKER'S 2974 02:14:37,269 --> 02:14:41,973 VALUES AND EMYBODIES THE DECISIN 2975 02:14:42,040 --> 02:14:45,310 MAKING AS A PARTNERSHIP. 2976 02:14:45,377 --> 02:14:47,546 HERE ACROSS DISCIPLINARY 2977 02:14:47,612 --> 02:14:51,316 COLLABORATION BETWEEN ICU AND 2978 02:14:51,383 --> 02:14:53,452 PALLIATIVE CARE TEAM FRAME ECMO 2979 02:14:53,518 --> 02:14:54,653 AS A TEMPORARY INTERVENTION 2980 02:14:54,719 --> 02:14:56,755 TOWARDS A SPECIFIC GOAL AND 2981 02:14:56,822 --> 02:14:57,789 RECOMMEND EARLY DISCUSSION OF 2982 02:14:57,856 --> 02:14:59,825 CIRCUMSTANCES WHERE ECMO IS NO 2983 02:14:59,891 --> 02:15:00,992 LONGER EFFECTIVE TO ACHIEVE 2984 02:15:01,059 --> 02:15:04,729 THOSE INTENDED GOALS TO PREPARE 2985 02:15:04,796 --> 02:15:10,268 FAMILIES TO POTENTIAL 2986 02:15:10,335 --> 02:15:14,739 DISCONTINUATION. 2987 02:15:14,806 --> 02:15:18,276 ONE THE RATIONALE THAT EACH 2988 02:15:18,343 --> 02:15:22,914 PATIENT RECEIVES A COMPREHENSIVE 2989 02:15:22,981 --> 02:15:25,717 LIST OF BENEFITS FOR THEM AND 2990 02:15:25,784 --> 02:15:28,320 FOLLOWING A ROBUST OR STRUCTURED 2991 02:15:28,386 --> 02:15:29,387 PROCESS TO MAKE DECISION. 2992 02:15:29,454 --> 02:15:33,492 AND THESE APPROACHES ALIGN WITH 2993 02:15:33,558 --> 02:15:34,793 ACCOUNTABILITY FOR REASONABLE 2994 02:15:34,860 --> 02:15:36,728 FRAMEWORK WHICH IS PROMOTE 2995 02:15:36,795 --> 02:15:37,329 LEGITIMATE DECISIONS THROUGH 2996 02:15:37,395 --> 02:15:40,232 FOUR CORE PRINCIPLES. 2997 02:15:40,298 --> 02:15:43,401 THAT RATIONALES BE ACCESSIBLE 2998 02:15:43,468 --> 02:15:46,505 AND BOUNDED IN REASON WITH 2999 02:15:46,571 --> 02:15:51,343 MECHANISM TO ENSURE THESE 3000 02:15:51,409 --> 02:15:54,246 CONDITIONS ARE MET BECAUSE WHILE 3001 02:15:54,312 --> 02:15:57,148 REASONABLE PEOPLE MAY DISAGREE 3002 02:15:57,215 --> 02:16:00,252 HOW TO NAVIGATE THE STEPS ARE 3003 02:16:00,318 --> 02:16:00,585 DEFINED HERE. 3004 02:16:00,652 --> 02:16:02,854 SO REGARDLESS OF AN INDIVIDUAL'S 3005 02:16:02,921 --> 02:16:03,688 AGREEMENT WITH THE FINAL 3006 02:16:03,755 --> 02:16:07,092 DETERMINATION AS IT WAS ARRIVED 3007 02:16:07,158 --> 02:16:09,194 AT VIA A LEGITIMATE 3008 02:16:09,261 --> 02:16:10,762 DECISION-MAKING PROCESS, ALL 3009 02:16:10,829 --> 02:16:15,600 STAKEHOLDERS CAN BE CONFIDENT 3010 02:16:15,667 --> 02:16:24,743 THEY'VE BEEN AFFORDED THE FAIR 3011 02:16:24,809 --> 02:16:28,780 DELIBERATION THEY DESERVE AND TO 3012 02:16:28,847 --> 02:16:30,215 STANDARDIZED INDICATIONS ACROSS 3013 02:16:30,282 --> 02:16:35,654 ALL THE THERAPIES AND ALL 3014 02:16:35,720 --> 02:16:35,887 CENTERS. 3015 02:16:35,954 --> 02:16:36,988 ADDITIONALLY, CLINICAL STATS 3016 02:16:37,055 --> 02:16:47,198 CHANGE. 3017 02:16:47,766 --> 02:16:49,401 AND GOALS SHOULD BE RECONSIDERED 3018 02:16:49,467 --> 02:16:54,606 IN CONVERSATIONS THROUGHOUT THE 3019 02:16:54,673 --> 02:16:59,077 PATIENT CARE CONTINUUM. 3020 02:16:59,144 --> 02:16:59,844 A LEGITIMATE DECISION MAY HELP 3021 02:16:59,911 --> 02:17:02,180 WITH DISCUSSIONS WITH FAMILIES 3022 02:17:02,247 --> 02:17:04,215 IF THEY'RE NO LONGER BENEFICIAL 3023 02:17:04,282 --> 02:17:07,852 AND HOLDING INSTITUTIONS 3024 02:17:07,919 --> 02:17:11,056 ACCOUNTABILITY AND HEALTH 3025 02:17:11,122 --> 02:17:13,625 ACCOUNT DASHBOARDS MAY REGAIN 3026 02:17:13,692 --> 02:17:14,960 SOCIETAL TRUST IN CLINICAL 3027 02:17:15,026 --> 02:17:16,461 DECISION MAKING. 3028 02:17:16,528 --> 02:17:18,029 THE DATA IDENTIFY DISPARITIES 3029 02:17:18,096 --> 02:17:20,732 AND PRIORITIZE TARGETED 3030 02:17:20,799 --> 02:17:21,533 INTERVENTIONS BECAUSE 3031 02:17:21,600 --> 02:17:23,234 TRANSPARENCY ABOUT OUR SHORT 3032 02:17:23,301 --> 02:17:24,069 COMINGS AS HEALTH CARE 3033 02:17:24,135 --> 02:17:25,704 INSTITUTIONS MAY BE A FIRST STEP 3034 02:17:25,770 --> 02:17:28,974 IN ADDRESSING THE IMPLICIT 3035 02:17:29,040 --> 02:17:30,642 INSTITUTIONAL AND STRUCTURAL 3036 02:17:30,709 --> 02:17:32,377 BIASES THAT IMPACT THE QUALITY 3037 02:17:32,444 --> 02:17:33,745 OF CARE RECEIVED AND HOLD US 3038 02:17:33,812 --> 02:17:37,349 ACCOUNTABLE FOR THE DECISIONS WE 3039 02:17:37,415 --> 02:17:37,549 MAKE. 3040 02:17:37,616 --> 02:17:39,818 WE ALSO NEED TO STRIVE FOR 3041 02:17:39,884 --> 02:17:41,987 BETTER DATA AND RESEARCH THAT 3042 02:17:42,053 --> 02:17:42,887 ADVANCES HEALTH EQUITY AND A 3043 02:17:42,954 --> 02:17:45,557 GROUP OF US HAVE BEEN WORKING TO 3044 02:17:45,624 --> 02:17:47,559 PROMOTE RACE-CONSCIOUS RESOURCE 3045 02:17:47,626 --> 02:17:50,929 OUTPUTS FROM THE REGISTRY. 3046 02:17:50,996 --> 02:17:54,599 THIRD CONVERSATIONS SHOULD BE 3047 02:17:54,666 --> 02:17:56,735 PREEMPTIVE AND PERSONALIZED. 3048 02:17:56,801 --> 02:17:58,637 TECHNOLOGY OR CPR HAVE YOU HAD 3049 02:17:58,703 --> 02:18:04,743 NOT BE PROVIDED TO AVOID HARD 3050 02:18:04,809 --> 02:18:15,320 CONVERSATIONS AND PREPPATORY 3051 02:18:15,754 --> 02:18:16,521 PLANNING AND RECOMMENDATION 3052 02:18:16,588 --> 02:18:19,824 EARLY RECOMMENDATIONS AGAINST 3053 02:18:19,891 --> 02:18:27,232 CPR IF THEY PREDICT UNSUCCESSFUL 3054 02:18:27,298 --> 02:18:28,299 RESUSCITATION AND THERE'S A 3055 02:18:28,366 --> 02:18:30,001 SPECTRUM OF SHARED DECISION 3056 02:18:30,068 --> 02:18:32,170 MAKING BY PERSONALIZING OUR 3057 02:18:32,237 --> 02:18:33,938 COMMUNICATION AND TAILORING HOW 3058 02:18:34,005 --> 02:18:37,742 FIRMLY WE GUIDE FAMILIES TO THE 3059 02:18:37,809 --> 02:18:40,645 CONTEST. 3060 02:18:40,712 --> 02:18:41,746 FOR SOME DECISION WE SHOULD 3061 02:18:41,813 --> 02:18:44,749 LOOK AT THE EXTREME END OF THE 3062 02:18:44,816 --> 02:18:47,118 SPECTRUM AND REFRAME THE MEDIA 3063 02:18:47,185 --> 02:18:47,619 NARRATIVE AND PROVIDE 3064 02:18:47,686 --> 02:18:48,787 RECOMMENDATIONS AGAINST 3065 02:18:48,853 --> 02:18:50,121 TECHNOLOGIES. 3066 02:18:50,188 --> 02:18:55,760 BUT IT'S NUANCED. 3067 02:18:55,827 --> 02:18:58,363 THERE'S ARCHITECTURE WITH HOW 3068 02:18:58,430 --> 02:19:01,566 OPTIONS INCREASE THE LIKELIHOOD 3069 02:19:01,633 --> 02:19:04,803 OF AN OUTCOME WITHOUT COERCION 3070 02:19:04,869 --> 02:19:06,204 BUT THESE ARE SKILLS TO BE 3071 02:19:06,271 --> 02:19:08,740 LEARNED IN PRACTICE AND PROTECT 3072 02:19:08,807 --> 02:19:11,776 PARTICULARLY LESS RESOURCED 3073 02:19:11,843 --> 02:19:14,412 FAMILIES FROM IMPLICIT BIAS. 3074 02:19:14,479 --> 02:19:15,213 DESPITE THIS NEED FOR HIGH 3075 02:19:15,280 --> 02:19:16,748 QUALITY COMMUNICATION AND THE 3076 02:19:16,815 --> 02:19:21,653 FACTS THAT DECISION MAKING IS 3077 02:19:21,720 --> 02:19:23,054 UBIQUITOUS IT'S NOT UNIFORMLY 3078 02:19:23,121 --> 02:19:24,723 TAUGHT TO TRAINEES BUT INTENDED 3079 02:19:24,789 --> 02:19:35,133 TO BE LEARN OSMOSIS. 3080 02:19:39,537 --> 02:19:40,805 ARMING PHYSICIANS IN TRAINING 3081 02:19:40,872 --> 02:19:44,042 IS A HUGE GAP AND TRAINEES FEEL 3082 02:19:44,109 --> 02:19:44,209 IT. 3083 02:19:44,275 --> 02:19:46,578 SOME RUN VITAL TALK FOR TRAINING 3084 02:19:46,644 --> 02:19:48,179 BUT THERE'S TIME AND FUNDING 3085 02:19:48,246 --> 02:19:49,781 WHICH IS INFEASIBLE AND WE NEED 3086 02:19:49,848 --> 02:19:52,450 TO THINK ABOUT HOW TO EXTEND THE 3087 02:19:52,517 --> 02:19:52,650 REACH. 3088 02:19:52,717 --> 02:19:54,352 IN AUSTRALIA, FOR EXAMPLE, 3089 02:19:54,419 --> 02:19:58,156 TRAINEES HAVE A MANDATORY 3090 02:19:58,223 --> 02:20:00,291 TWO-DAY COURSE PRACTICING 3091 02:20:00,358 --> 02:20:00,892 COMMUNICATION STRATEGY WITH 3092 02:20:00,959 --> 02:20:02,861 ACTORS. 3093 02:20:02,927 --> 02:20:13,304 >> ALMOST AT THE END. 3094 02:20:15,140 --> 02:20:18,676 WE NEED MORE DATA HOW TO 3095 02:20:18,743 --> 02:20:20,078 INTEGRATE PEDIATRIC PALLIATIVE 3096 02:20:20,145 --> 02:20:22,480 CARE OR ETHICS EXPERTISE SUCH AS 3097 02:20:22,547 --> 02:20:26,618 OUGAUTOMATIC OR TRIGGERED 3098 02:20:26,684 --> 02:20:27,018 CONSULTATION. 3099 02:20:27,085 --> 02:20:29,387 I WORRY A TIDAL WAVE OF CONFLICT 3100 02:20:29,454 --> 02:20:30,889 IS COMING AND UNPREPARED AND 3101 02:20:30,955 --> 02:20:32,957 LACK TOOLS TO DEAL WITH IT. 3102 02:20:33,024 --> 02:20:41,166 THE DEBATES LACK IMPLEMENTATION 3103 02:20:41,232 --> 02:20:44,202 TECHNIQUES TO CLINICIANS AT THE 3104 02:20:44,269 --> 02:20:47,071 BEDSIDE. 3105 02:20:47,138 --> 02:20:50,041 WHAT DIFFERS TO PARENTS IS 3106 02:20:50,108 --> 02:20:50,742 PROFESSIONAL INTEGRITY AND 3107 02:20:50,809 --> 02:20:53,244 RESPONSIBILITY TO THE CHILD AND 3108 02:20:53,311 --> 02:20:53,778 ANY LEGAL RESOURCE IS SUB 3109 02:20:53,845 --> 02:20:58,082 OPTIMAL. 3110 02:20:58,149 --> 02:21:00,185 THERE'S BEEN A LOT OF DEBATES 3111 02:21:00,251 --> 02:21:02,854 ABOUT THE BEST INTEREST STANDARD 3112 02:21:02,921 --> 02:21:04,756 BETWEEN THE AUSTRALIAN AND U.K. 3113 02:21:04,823 --> 02:21:06,224 APPROACH VERSUS THE 3114 02:21:06,291 --> 02:21:08,726 U.S. APPROACH AND NEITHER OF 3115 02:21:08,793 --> 02:21:11,029 WHICH HAVE BEEN SHOWN TO BE 3116 02:21:11,095 --> 02:21:11,296 ADEQUATE. 3117 02:21:11,362 --> 02:21:14,499 IN AN ATTEMPT TO OVERCOME THE 3118 02:21:14,566 --> 02:21:16,000 CRITICAL CARE SOCIETIES AND 3119 02:21:16,067 --> 02:21:20,705 ADOPT A PROCESS-BASED APPROACH 3120 02:21:20,772 --> 02:21:26,444 TO ADDRESS THE POTENTIALLY 3121 02:21:26,511 --> 02:21:27,846 INAPPROPRIATE THERAPIES AND 3122 02:21:27,912 --> 02:21:28,880 BALANCING COMPETING ETHICAL 3123 02:21:28,947 --> 02:21:30,515 CONSIDERATIONS AND LACKING 3124 02:21:30,582 --> 02:21:32,250 SOCIETAL ENDORSEMENT. 3125 02:21:32,317 --> 02:21:34,118 WE NEED NOVEL ACCESSIBLE AND 3126 02:21:34,185 --> 02:21:35,854 PRACTICAL SOLUTIONS FOR CONFLICT 3127 02:21:35,920 --> 02:21:38,289 AND I THINK THIS GAP HAS TO BE 3128 02:21:38,356 --> 02:21:39,691 ADDRESSED BY COLLABORATION 3129 02:21:39,757 --> 02:21:41,759 BETWEEN DISCIPLINES OF THE 3130 02:21:41,826 --> 02:21:44,729 MEDICAL PROFESSIONAL WITH 3131 02:21:44,796 --> 02:21:45,363 COMMUNITY ENGAGEMENT. 3132 02:21:45,430 --> 02:21:46,497 IN CONCLUSION. 3133 02:21:46,564 --> 02:21:48,399 WE'RE AT A FRONTIER AS WE CAN DO 3134 02:21:48,466 --> 02:21:50,835 MORE IN MEDICINE, WE NEED TO 3135 02:21:50,902 --> 02:21:52,871 BETTER UNDERSTAND HOW IT HELPS 3136 02:21:52,937 --> 02:21:55,373 PATIENTS AND SOCIETY EQUITABLY 3137 02:21:55,440 --> 02:21:57,709 AND IN AN ETHICALLY SUPPORTED 3138 02:21:57,775 --> 02:21:57,876 WAY. 3139 02:21:57,942 --> 02:21:58,676 ACKNOWLEDGING THERE'S MORE WORK 3140 02:21:58,743 --> 02:22:01,479 TO BE DONE IN THE FIELD AND 3141 02:22:01,546 --> 02:22:03,681 POTENTIAL SOLUTIONS ARE TO 3142 02:22:03,748 --> 02:22:06,017 DEFINE BENEFICIAL THERAPIES WITH 3143 02:22:06,084 --> 02:22:08,753 CLINICAL AND VALUE-BASED GOALS 3144 02:22:08,820 --> 02:22:12,624 AND PERSONALIZE OUR APPROACH TO 3145 02:22:12,690 --> 02:22:14,092 DECISION MAKING WITH 3146 02:22:14,158 --> 02:22:17,395 TRANSPARENCY AND GIVE THE NEXT 3147 02:22:17,462 --> 02:22:18,363 GENERATION THE SKILLS TO HAVE 3148 02:22:18,429 --> 02:22:21,766 THE CONVERSATIONS AND 3149 02:22:21,833 --> 02:22:24,736 ORGANIZATIONS NEED TO DEFINE A 3150 02:22:24,802 --> 02:22:27,438 COMPLEX FOR DECISION MAKING AND 3151 02:22:27,505 --> 02:22:33,411 DEVELOP STRATEGIES FOR CONFLICT. 3152 02:22:33,478 --> 02:22:34,979 I WOULD LIKE TO THANK ALL THAT 3153 02:22:35,046 --> 02:22:35,847 CONTRIBUTED TO THE WORK AND LOOK 3154 02:22:35,914 --> 02:22:40,218 FORWARD TO THE PANEL DISCUSSION. 3155 02:22:40,285 --> 02:22:43,187 >> THANK YOU VERY MUCH. 3156 02:22:43,254 --> 02:22:50,595 AND NOW I WANT TO INTRODUCE OUR 3157 02:22:50,662 --> 02:22:52,130 SECOND SPEAKER, DR. BELL IN 3158 02:22:52,196 --> 02:22:54,098 GRAND RAPIDS, MICHIGAN. 3159 02:22:54,165 --> 02:22:56,734 HER CLINICAL EXPERTISE IS IN 3160 02:22:56,801 --> 02:22:58,469 CARING FOR YOUNG ADOLESCENTS AND 3161 02:22:58,536 --> 02:23:00,872 YOUNG ADULTS LIVING WITH 3162 02:23:00,939 --> 02:23:03,241 ADVANCED CANCER IN ACUTE CARE 3163 02:23:03,308 --> 02:23:06,577 SETTING AND PROVIDING END OF 3164 02:23:06,644 --> 02:23:09,414 LIFE CARE AND HELPED CLINICIANS 3165 02:23:09,480 --> 02:23:10,949 IDENTIFY A YOUNG PERSON'S 3166 02:23:11,015 --> 02:23:14,285 READINESS TO ENGAGE IN CLINICAL 3167 02:23:14,352 --> 02:23:15,219 CONVERSATION THAT RESPECT AS A 3168 02:23:15,286 --> 02:23:19,457 YOUNG PERSON'S HOPES AND DREAMS 3169 02:23:19,524 --> 02:23:24,095 FOR THE FUTURE WHILE ACCEPTING 3170 02:23:24,162 --> 02:23:27,231 THE PALLIATIVE CARE AND END OF 3171 02:23:27,298 --> 02:23:28,466 LIFE DECISIONS. 3172 02:23:28,533 --> 02:23:32,737 DR. BELL, HAVE YOU 20 MINUTES. 3173 02:23:32,804 --> 02:23:35,907 >> THANK YOU SO MUCH. 3174 02:23:35,974 --> 02:23:39,110 IT'S A PLEASURE TO BE HERE BUT I 3175 02:23:39,177 --> 02:23:41,112 THINK I'M STILL HAVING TECHNICAL 3176 02:23:41,179 --> 02:23:43,481 DIFFICULTIES BECAUSE I STILL SEE 3177 02:23:43,548 --> 02:23:49,854 THE END OF DR. MOYNAHAN'S 3178 02:23:49,921 --> 02:23:50,188 PRESENTATION. 3179 02:23:50,254 --> 02:24:00,732 >> WE SEE YOUR FIRST SLIDE. 3180 02:24:08,539 --> 02:24:14,545 I'M HONORED TO BE HERE TODAY. 3181 02:24:14,612 --> 02:24:18,282 I HAVE NO CONFLICTS OF INTEREST 3182 02:24:18,349 --> 02:24:20,718 OR CONSUMER INTERESTS TO 3183 02:24:20,785 --> 02:24:26,758 DISCLOSE. 3184 02:24:26,824 --> 02:24:28,760 THE SPANISH POET SAID TRAVELER, 3185 02:24:28,826 --> 02:24:30,695 THERE NOT PATH. 3186 02:24:30,762 --> 02:24:33,231 THE PATH WAS BE FORGED AS YOU 3187 02:24:33,297 --> 02:24:33,831 WALK. 3188 02:24:33,898 --> 02:24:37,535 I'M THANKFUL FOR THE PIONEERS IN 3189 02:24:37,602 --> 02:24:39,637 OUR FIELD AND THE PEOPLE WHO 3190 02:24:39,704 --> 02:24:43,508 HAVE GONE BEFORE US TO FORGE THE 3191 02:24:43,574 --> 02:24:44,842 PATH AND ARE CONTINUING TO FORGE 3192 02:24:44,909 --> 02:24:48,813 THE PATH ALONG WITH OUR PATIENTS 3193 02:24:48,880 --> 02:24:53,418 AND THEIR FAMILIES. 3194 02:24:53,484 --> 02:24:55,720 TODAY WE'RE GOING TO TALK ABOUT 3195 02:24:55,787 --> 02:24:58,089 THE OVER ALL HEALTH NEEDS OF 3196 02:24:58,156 --> 02:24:59,490 ADOLESCENTS AND YOUNG ADULTS 3197 02:24:59,557 --> 02:25:00,758 WITH SERIOUS ILLNESS. 3198 02:25:00,825 --> 02:25:02,226 WE'RE GOING TO DISCUSS A LITTLE 3199 02:25:02,293 --> 02:25:03,594 BIT ABOUT THEIR PALLIATIVE AND 3200 02:25:03,661 --> 02:25:07,899 END OF LIFE DECISION MAKING 3201 02:25:07,965 --> 02:25:08,099 NEEDS. 3202 02:25:08,166 --> 02:25:09,133 LOOK AT THE GAPS AND DISCUSS 3203 02:25:09,200 --> 02:25:09,667 PRIORITIES FOR THE FUTURE. 3204 02:25:09,734 --> 02:25:14,105 . 3205 02:25:14,172 --> 02:25:17,775 SO EACH OF US IN THIS ROOM HAVE 3206 02:25:17,842 --> 02:25:18,643 OUR OWN WHY. 3207 02:25:18,709 --> 02:25:24,715 FOR ME IT BEGAN SEVERAL YEARS 3208 02:25:24,782 --> 02:25:28,719 AGO WHEN I WAS CARING FOR 3209 02:25:28,786 --> 02:25:31,389 SERIOUS ILLNESS PATIENTS IN 3210 02:25:31,456 --> 02:25:33,591 THEIR HOMES AND I WAS EQUIPPED 3211 02:25:33,658 --> 02:25:35,460 TO ENTER INTO THIS SPACE WITH A 3212 02:25:35,526 --> 02:25:36,727 CRITICAL CARE BACKGROUND AND 3213 02:25:36,794 --> 02:25:41,799 CARE FOR THE CHILDREN. 3214 02:25:41,866 --> 02:25:50,241 I HAD MY OWN RABT LA BTRY TO SEE 3215 02:25:50,308 --> 02:25:51,876 THERE WERE THINGS WE DIDN'T HAVE 3216 02:25:51,943 --> 02:25:53,177 ANSWERS FOR AND THE KEY 3217 02:25:53,244 --> 02:25:53,811 OBSERVATIONS WAS THERE'S A LOT 3218 02:25:53,878 --> 02:25:56,747 OF PROTECTION THAT GOES ON BACK 3219 02:25:56,814 --> 02:25:58,182 AND FORTH BETWEEN PARENTS AND 3220 02:25:58,249 --> 02:26:00,284 THE CHILDREN AND I BELIEVE THIS 3221 02:26:00,351 --> 02:26:02,887 IS DONE OUT OF LOVE. 3222 02:26:02,954 --> 02:26:04,021 CHILDREN ALSO PROTECT THEIR 3223 02:26:04,088 --> 02:26:05,790 PARENTS BUT IT DOES INTERFERE 3224 02:26:05,857 --> 02:26:08,726 WITH OUR ABILITY TO INITIATE AND 3225 02:26:08,793 --> 02:26:09,327 ENGAGE THEM IN END OF LIFE 3226 02:26:09,393 --> 02:26:12,196 COMMUNICATION. 3227 02:26:12,263 --> 02:26:14,899 AS ADOLESCENTS MATURE, THEY HAVE 3228 02:26:14,966 --> 02:26:17,702 A HIGHER UNDERSTANDING OF THE 3229 02:26:17,768 --> 02:26:20,805 FINALITY OF DEATH AND EMOTIONAL 3230 02:26:20,872 --> 02:26:21,572 TOLL DEATH TAKES ON THEMSELVES 3231 02:26:21,639 --> 02:26:26,010 AND THEIR FAMILIES. 3232 02:26:26,077 --> 02:26:30,114 AND IT CHANGES THE PROCESSING OF 3233 02:26:30,181 --> 02:26:30,414 INFORMATION. 3234 02:26:30,481 --> 02:26:32,216 AND THE OTHER THING THAT WAS 3235 02:26:32,283 --> 02:26:36,721 DIFFICULT FOR ME TO WATCH OR BE 3236 02:26:36,787 --> 02:26:39,090 A PART OF WAS THE SOCIAL 3237 02:26:39,157 --> 02:26:40,725 ISOLATION THAT OCCURS AS 3238 02:26:40,791 --> 02:26:44,195 ADOLESCENTS AND YOUNG ADULTS 3239 02:26:44,262 --> 02:26:45,029 TRAVERSING THIS PATH TOWARDS END 3240 02:26:45,096 --> 02:26:48,199 OF LIFE AND FAMILY MEMBERS GO 3241 02:26:48,266 --> 02:26:49,233 ALONG THE PATH WITH THEM BUT 3242 02:26:49,300 --> 02:26:52,737 NEITHER KNOWS HOW TO ENGAGE WITH 3243 02:26:52,803 --> 02:26:54,372 EACH OTHER FOR THESE 3244 02:26:54,438 --> 02:26:57,909 COMMUNICATION ISSUES AND IT'S 3245 02:26:57,975 --> 02:26:58,876 THIS SOCIAL ISOLATION WAS 3246 02:26:58,943 --> 02:27:09,320 DIFFICULT TO WITNESS. 3247 02:27:12,089 --> 02:27:22,166 HERE'S SOME PIONEERS THAT I 3248 02:27:22,233 --> 02:27:26,537 THANK IN MY FIELD AND HOW A 3249 02:27:26,604 --> 02:27:28,005 CHILD SITUATES THEMSELVES OR 3250 02:27:28,072 --> 02:27:30,841 ADOLESCENT IN A PLACE WHERE THEY 3251 02:27:30,908 --> 02:27:31,943 BECOME AWARE OF THE FACT THAT 3252 02:27:32,009 --> 02:27:34,745 THEY ARE GOING TO DIE BUT GO OUT 3253 02:27:34,812 --> 02:27:38,216 OF THAT AWARENESS AND ENGAGE IN 3254 02:27:38,282 --> 02:27:39,717 OTHER PEOPLE TO MAKE THOSE 3255 02:27:39,784 --> 02:27:43,387 OTHERS MORE COMFORTABLE AND THEN 3256 02:27:43,454 --> 02:27:46,257 DR. HINDS WORK WHERE SHE 3257 02:27:46,324 --> 02:27:47,391 ELEVATED THE ADOLESCENT VOICE IN 3258 02:27:47,458 --> 02:27:49,393 PARTICULAR MAKING END OF LIFE 3259 02:27:49,460 --> 02:27:52,496 DECISIONS AND HELPED NORMALIZE 3260 02:27:52,563 --> 02:27:54,365 THE FACT WE CAN TALK ABOUT THIS 3261 02:27:54,432 --> 02:27:57,134 AND THEY WANT TO ENGAGE WITH US 3262 02:27:57,201 --> 02:28:07,111 AND DR. WIENER'S WORK IN LOOKING 3263 02:28:07,178 --> 02:28:10,481 AT ADD -- ADOLESCENTS WANT TO 3264 02:28:10,548 --> 02:28:12,550 PLAN THEIR END OF LIFE CARE. 3265 02:28:12,617 --> 02:28:14,885 I REMEMBER THE EXACT PLACE I I 3266 02:28:14,952 --> 02:28:20,658 AM IMPLEMENTED THE RESOURCES IN 3267 02:28:20,725 --> 02:28:22,393 BONE MARROW TRANSPLANT SETTING 3268 02:28:22,460 --> 02:28:23,995 WHERE A MOM ASKED ME TO GO IN 3269 02:28:24,061 --> 02:28:26,464 THE ROOM AND HAVE THE 3270 02:28:26,530 --> 02:28:29,433 CONVERSATION AND WANTED ME TO 3271 02:28:29,500 --> 02:28:31,969 OPEN UP THE CONFERENCE 3272 02:28:32,036 --> 02:28:33,070 CONVERSATION WITH THEIR SON AND 3273 02:28:33,137 --> 02:28:35,773 HE WAS GOING HOME TO DIE AND 3274 02:28:35,840 --> 02:28:36,774 WANTED ME TO TALK ABOUT DEATH 3275 02:28:36,841 --> 02:28:45,583 AND DYING ALONG THE WAY. 3276 02:28:45,650 --> 02:28:48,719 ONE OF THE THINGS I THINK THAT 3277 02:28:48,786 --> 02:28:51,889 IS IMPORTANT TO ALSO -- I'M 3278 02:28:51,956 --> 02:28:52,490 HAVING TECHNICAL DIFFICULTIES 3279 02:28:52,556 --> 02:28:52,690 AGAIN. 3280 02:28:52,757 --> 02:29:01,666 I'M SORRY. 3281 02:29:01,732 --> 02:29:04,201 ONE OF THE THINGS WE WON'T TAKE 3282 02:29:04,268 --> 02:29:06,504 A LOT OF TIME TALKING ABOUT IS 3283 02:29:06,570 --> 02:29:08,506 THE UNIQUE DEVELOPMENT NEEDS AND 3284 02:29:08,572 --> 02:29:09,006 IMPORTANT TO HIGHLIGHT 3285 02:29:09,073 --> 02:29:12,376 ADOLESCENT AND YOUNG ADULTS GO 3286 02:29:12,443 --> 02:29:15,479 THROUGH A TREMENDOUS 3287 02:29:15,546 --> 02:29:17,648 PSYCHOLOGICAL AND SPIRITUAL 3288 02:29:17,715 --> 02:29:24,689 CHANGES AND ALL THESE WHEN 3289 02:29:24,755 --> 02:29:25,423 COMPOUNDED WITH AN ADVANCED 3290 02:29:25,489 --> 02:29:28,192 DISEASE IMPACTS HOW THEY'RE 3291 02:29:28,259 --> 02:29:32,730 PROCESSING AND HOW THEY'RE 3292 02:29:32,797 --> 02:29:34,965 EXPERIENCING THEIR ILL. 3293 02:29:35,032 --> 02:29:36,367 -- ILLNESS. 3294 02:29:36,434 --> 02:29:37,601 MANY PEOPLE STUDIED EACH ASPECT 3295 02:29:37,668 --> 02:29:40,037 BUT WHEN WE TAKE IT INTO 3296 02:29:40,104 --> 02:29:40,738 PALLIATIVE CARE IT'S IMPORTANT 3297 02:29:40,805 --> 02:29:44,442 FOR INDIVIDUALS TO NOT ONLY KNOW 3298 02:29:44,508 --> 02:29:47,011 THE UNIQUE DEVELOPMENTAL NEEDS 3299 02:29:47,078 --> 02:29:48,312 BUT ALSO THE PRIORITIES THAT A 3300 02:29:48,379 --> 02:29:50,514 PERSON HAS IN TERMS OF 3301 02:29:50,581 --> 02:29:50,915 PALLIATIVE CARE. 3302 02:29:50,981 --> 02:29:52,750 WE'RE KIND OF ALL OVER THE MAP 3303 02:29:52,817 --> 02:29:55,886 IN TERMS OF THE AGE OF THE 3304 02:29:55,953 --> 02:29:56,721 ADOLESCENT. 3305 02:29:56,787 --> 02:30:02,360 WE WANTED TO KIND OF PULL OUT 3306 02:30:02,426 --> 02:30:06,097 TWO SOURCES THAT GIVE GUIDANCE 3307 02:30:06,163 --> 02:30:07,598 ON PALLIATIVE CARE AND THE WORLD 3308 02:30:07,665 --> 02:30:08,866 HEALTH ORGANIZATION AND THE 3309 02:30:08,933 --> 02:30:10,434 ADOLESCENT DEFINITION OF THAT 3310 02:30:10,501 --> 02:30:14,038 AND THE NCI'S DEFINITION WHICH 3311 02:30:14,105 --> 02:30:24,415 EXTENDS 15 TO 39. 3312 02:30:25,683 --> 02:30:26,684 WE LOOK ACROSS MANY DISEASES AND 3313 02:30:26,751 --> 02:30:32,356 THEY'RE HIGHLIGHTED HERE. 3314 02:30:32,423 --> 02:30:34,658 IN THE CENTER IS THE CUBICLE 3315 02:30:34,725 --> 02:30:36,394 THAT SAYS THE LOST TRIBE. 3316 02:30:36,460 --> 02:30:38,496 ADOLESCENTS AND YOUNG ADULTS ARE 3317 02:30:38,562 --> 02:30:40,598 SOMETIMES NOT -- THERE'S NOT A 3318 02:30:40,664 --> 02:30:42,967 HOME FOR THEM AND SO WE NEED TO 3319 02:30:43,033 --> 02:30:45,369 KIND OF FIND THAT SPACE AND 3320 02:30:45,436 --> 02:30:48,072 THERE ARE MANY PEOPLE WHO ARE 3321 02:30:48,139 --> 02:30:49,306 PASSIONATELY WORKING ON 3322 02:30:49,373 --> 02:30:50,908 DIFFERENT TYPES OF PALLIATIVE 3323 02:30:50,975 --> 02:30:54,879 CARE. 3324 02:30:54,945 --> 02:30:57,181 SO WHEN WE THINK ABOUT DECISION 3325 02:30:57,248 --> 02:31:00,718 MAKING A COUPLE THINGS I WANT TO 3326 02:31:00,785 --> 02:31:02,853 BRIEFLY HIGHLIGHT IS TO ASSESS 3327 02:31:02,920 --> 02:31:04,722 THE AGE GROUP'S INDIVIDUAL 3328 02:31:04,789 --> 02:31:05,055 PREFERENCES. 3329 02:31:05,122 --> 02:31:06,590 WHAT WOULD THEY LIKE THEIR END 3330 02:31:06,657 --> 02:31:07,758 OF LIFE TO BE? 3331 02:31:07,825 --> 02:31:10,895 AND WHO IS THAT TRUSTED PERSON 3332 02:31:10,961 --> 02:31:12,596 THEY WANT TO HAVE THAT WALKS 3333 02:31:12,663 --> 02:31:14,064 ALONGSIDE THEM WITH THE DECISION 3334 02:31:14,131 --> 02:31:15,933 MAKING THAT IS DONE AND HOW CAN 3335 02:31:16,000 --> 02:31:19,236 WE UPHOLD THEIR DECISIONAL 3336 02:31:19,303 --> 02:31:20,738 CONTROL PREFERENCES IN THEIR 3337 02:31:20,805 --> 02:31:22,406 ABILITY TO HAVE A SAY IN WHAT'S 3338 02:31:22,473 --> 02:31:22,907 GOING ON. 3339 02:31:22,973 --> 02:31:25,409 THAT'S IMPORTANT FOR US TO 3340 02:31:25,476 --> 02:31:26,911 ENGAGE IN DISCUSSIONS INVOLVED 3341 02:31:26,977 --> 02:31:30,214 IN THE MEDICAL RESEARCH 3342 02:31:30,281 --> 02:31:33,451 DECISIONS OR ONGOING CARE EVENT 3343 02:31:33,517 --> 02:31:35,553 AND ADVANCED DIRECTIVES AND END 3344 02:31:35,619 --> 02:31:40,591 OF LIFE DECISIONS. 3345 02:31:40,658 --> 02:31:42,960 SO THERE'S A STUDY ABOUT 3346 02:31:43,027 --> 02:31:44,462 PALLIATIVE CARE NEEDS FOR 3347 02:31:44,528 --> 02:31:48,833 ADOLESCENTS AND YOUNG ADULTS 3348 02:31:48,899 --> 02:31:51,368 THAT SUMMARIZES 51 STUDIES 3349 02:31:51,435 --> 02:31:53,170 BETWEEN 2002 AND 2021. 3350 02:31:53,237 --> 02:31:56,307 AND ONLY 18% INCLUDED 3351 02:31:56,373 --> 02:31:56,907 NON-MALIGNANT ILLNESSES. 3352 02:31:56,974 --> 02:31:59,343 THERE WAS ALSO A DISPARITY IN 3353 02:31:59,410 --> 02:32:05,449 THE REPORTING OF RACIAL AND 3354 02:32:05,516 --> 02:32:07,985 ETHNIC CORRELATIONS AND IT 3355 02:32:08,052 --> 02:32:10,154 HIGHLIGHTED THROUGH THE STUDIES 3356 02:32:10,221 --> 02:32:12,723 THE COMPLEX SYMPTOM BURDEN THAT 3357 02:32:12,790 --> 02:32:14,425 OCCURS WHICH BEGS THE QUESTION 3358 02:32:14,492 --> 02:32:17,061 THAT THE SYSTEMS ARE INTENSIFIED 3359 02:32:17,127 --> 02:32:21,365 BY THE PSYCHOSOCIAL THINGS THEOR 3360 02:32:21,432 --> 02:32:22,867 PROCESSING AND HIGHLIGHTED THE 3361 02:32:22,933 --> 02:32:24,101 PREFERENCE OF ADOLESCENTS AND 3362 02:32:24,168 --> 02:32:27,438 YOUNG ADULTS TO ENGAGE IN 3363 02:32:27,505 --> 02:32:29,673 ADVANCED CARE PLANNING 3364 02:32:29,740 --> 02:32:30,875 DISCUSSIONS EARLIER IN THE 3365 02:32:30,941 --> 02:32:34,144 TRAJECTORY OF THEIR ILLNESS AND 3366 02:32:34,211 --> 02:32:40,384 REALLY S ME EMPHASIZES THE NEED 3367 02:32:40,451 --> 02:32:41,619 OF PSYCHOSOCIAL SUPPORT AND 3368 02:32:41,685 --> 02:32:44,922 WE'RE NOT ACCESSING THEIR CARE 3369 02:32:44,989 --> 02:32:47,758 OR THEY'RE NOT ACCESSING 3370 02:32:47,825 --> 02:32:48,425 PALLIATIVE SERVICES UNTIL LATE 3371 02:32:48,492 --> 02:32:51,795 IN THEIR ILLNESSES AND SOMETIMES 3372 02:32:51,862 --> 02:32:54,398 NOT HAVING CONSULTS IN THE END 3373 02:32:54,465 --> 02:32:56,734 OF LIFE. 3374 02:32:56,800 --> 02:33:02,907 AND THEN THERE ARE MALIGNANCIES. 3375 02:33:02,973 --> 02:33:04,375 HEMATOLOGICAL MALIGNANCIES 3376 02:33:04,441 --> 02:33:05,576 SHOWING UP IN THE LITERATURE 3377 02:33:05,643 --> 02:33:08,345 WITH END OF LIFE MEDICAL CARE 3378 02:33:08,412 --> 02:33:10,648 AND CLINICALLY AND ANECDOTALLY 3379 02:33:10,714 --> 02:33:11,448 WE SEE SOMETIMES THE DECISIONS 3380 02:33:11,515 --> 02:33:15,786 ABOUT END OF LIFE ARE NOT EVEN 3381 02:33:15,853 --> 02:33:17,187 TALKED ABOUT. 3382 02:33:17,254 --> 02:33:18,789 WE DON'T KNOW THE WISHES OF THE 3383 02:33:18,856 --> 02:33:19,723 ADOLESCENT OR YOUNG ADULT. 3384 02:33:19,790 --> 02:33:30,501 IN VSUMMARY THIS IS A VULNERABL 3385 02:33:32,002 --> 02:33:33,871 POPULATION. 3386 02:33:33,938 --> 02:33:35,105 WE EMPHASIZE THE PSYCHOSOCIAL 3387 02:33:35,172 --> 02:33:36,574 NEEDS AND HOPE THOSE IN THE 3388 02:33:36,640 --> 02:33:38,842 SPACE CAN THINK HOW TO 3389 02:33:38,909 --> 02:33:40,344 COLLABORATIVELY WORK TOGETHER TO 3390 02:33:40,411 --> 02:33:42,112 ADDRESS THEIR PALLIATIVE AND END 3391 02:33:42,179 --> 02:33:44,748 OF LIFE NEEDS WITH OUR SPACES 3392 02:33:44,815 --> 02:33:46,984 THAT WE'RE IN. 3393 02:33:47,051 --> 02:33:50,521 THERE'S A REVIEW THAT EMPHASIZES 3394 02:33:50,588 --> 02:33:52,856 NINE INTERVENTIONS. 3395 02:33:52,923 --> 02:33:56,093 WE HEARD YESTERDAY ABOUT THE 3396 02:33:56,160 --> 02:33:58,295 INTERVENTIONS SCIENCE THAT IS 3397 02:33:58,362 --> 02:33:58,495 THERE. 3398 02:33:58,562 --> 02:34:00,397 THERE ARE NINE STUDIES THAT WERE 3399 02:34:00,464 --> 02:34:08,038 TALKED ABOUT IN THIS REVIEW. 3400 02:34:08,105 --> 02:34:10,541 22 ARTICLES WERE HIGHLIGHTED AND 3401 02:34:10,608 --> 02:34:12,910 THERE'S EVIDENCE-BASED 3402 02:34:12,977 --> 02:34:14,511 INTERVENTIONS AVAILABLE FOR THE 3403 02:34:14,578 --> 02:34:15,379 PSYCHOSOCIAL DISTRESS IN 3404 02:34:15,446 --> 02:34:19,316 ADDITION TO STRESS MANAGEMENT 3405 02:34:19,383 --> 02:34:22,953 AND MINDFULNESS AND LEGACY 3406 02:34:23,020 --> 02:34:24,722 INTERVENTIONS DEVELOPED IN THE 3407 02:34:24,788 --> 02:34:27,358 LITERATURE AND HAVE PRETTY GOOD 3408 02:34:27,424 --> 02:34:28,525 BASE OF LITERATURE TO SUPPORT 3409 02:34:28,592 --> 02:34:30,928 THAT IN ADDITION TO THERAPIES 3410 02:34:30,995 --> 02:34:33,497 THAT PSYCHIATRISTS AND 3411 02:34:33,564 --> 02:34:34,665 PSYCHOLOGISTS ARE VERY 3412 02:34:34,732 --> 02:34:36,433 KNOWLEDGEABLE CAN HELP OUR 3413 02:34:36,500 --> 02:34:38,802 ADOLESCENTS SUCH AS DIGNITY 3414 02:34:38,869 --> 02:34:40,738 THERAPY OR MEANING-BASED 3415 02:34:40,804 --> 02:34:50,981 THERAPIES. 3416 02:34:51,448 --> 02:34:52,549 WHEN WE THINK OF CONVERSATIONS 3417 02:34:52,616 --> 02:34:54,752 WITH THE YOUNG PEOPLE THERE'S A 3418 02:34:54,818 --> 02:34:55,519 WHOLE CONSTRUCT OF READINESS 3419 02:34:55,586 --> 02:34:58,288 THAT'S IMPORTANT TO TALK ABOUT 3420 02:34:58,355 --> 02:35:00,257 AND A FEW YEARS BACK SOME 3421 02:35:00,324 --> 02:35:04,595 COLLEAGUES AND I WROTE A PIECE 3422 02:35:04,662 --> 02:35:08,732 ON THE ROAD TO READINESS AND 3423 02:35:08,799 --> 02:35:16,674 LOOKING AT READINESS FROM THE 3424 02:35:16,740 --> 02:35:18,642 PROVIDE PERSPECTIVE AND LOOKING 3425 02:35:18,709 --> 02:35:20,177 AT THE PALLIATIVE CARE AND END 3426 02:35:20,244 --> 02:35:21,412 OF LIFE DECISION ARE DIFFICULT 3427 02:35:21,478 --> 02:35:23,914 AND THE FAMILY MAY BE ON A 3428 02:35:23,981 --> 02:35:24,748 DIFFERENT READINESS STEP AS 3429 02:35:24,815 --> 02:35:25,449 WELL. 3430 02:35:25,516 --> 02:35:28,719 THERE'S A TABLE IN OUR ARTICLE 3431 02:35:28,786 --> 02:35:30,454 THAT GIVES YOU SOME 3432 02:35:30,521 --> 02:35:31,889 CONSIDERATIONS IF YOU'RE HAVING 3433 02:35:31,955 --> 02:35:36,093 TROUBLE INITIATING THE 3434 02:35:36,160 --> 02:35:37,127 CONVERSATIONS AND THE READINESS 3435 02:35:37,194 --> 02:35:40,731 OF THE ADOLESCENT OR CHILD YOU 3436 02:35:40,798 --> 02:35:47,037 ARE TALKING TO. 3437 02:35:47,104 --> 02:35:49,273 AND THEN THIS SLIDE IS PRETTY 3438 02:35:49,339 --> 02:35:50,708 COMPLEX BUT IT GOES BECOME TO 3439 02:35:50,774 --> 02:35:53,977 THE WORK THAT I'VE DONE IN TERMS 3440 02:35:54,044 --> 02:35:59,249 OF REALLY STUDYING THE 3441 02:35:59,316 --> 02:36:01,819 ENVIRONMENT AND CONSTRUCT OF 3442 02:36:01,885 --> 02:36:03,687 READINESS AND READY TO ENGAGE IN 3443 02:36:03,754 --> 02:36:08,926 DISCUSSIONS AND DECISIONS ABOUT 3444 02:36:08,992 --> 02:36:11,261 THEIR CARE. 3445 02:36:11,328 --> 02:36:12,463 THERE ARE THREE MAIN COMPONENTS 3446 02:36:12,529 --> 02:36:15,365 FROM A CASE STUDY RESEARCH. 3447 02:36:15,432 --> 02:36:17,301 LOOKING AT THINGS FROM A 3448 02:36:17,367 --> 02:36:19,103 QUALITATIVE STANDPOINT AND 3449 02:36:19,169 --> 02:36:19,937 QUANTITATIVE STANDPOINT FROM 3450 02:36:20,003 --> 02:36:22,239 MEDICAL RECORD REVIEWS. 3451 02:36:22,306 --> 02:36:23,240 THERE'S RICH DATA THAT SUPPORTS 3452 02:36:23,307 --> 02:36:29,012 THE BUILDING OF MODELS. 3453 02:36:29,079 --> 02:36:32,382 AND THE FIRST PART IS READINESS 3454 02:36:32,449 --> 02:36:38,155 AND COGNITIVE DOMAIN AND 3455 02:36:38,222 --> 02:36:47,898 ACCEPTANCE AND LOOKING TO ENGAGE 3456 02:36:47,965 --> 02:36:50,067 IN CONVERSATIONS AND THE SLIDE 3457 02:36:50,134 --> 02:36:53,837 IS TO CAPTURE HOW DYNAMIC THE 3458 02:36:53,904 --> 02:36:58,041 AWARENESS OCCURS IN OUR 3459 02:36:58,108 --> 02:36:58,876 CONVERSATION. 3460 02:36:58,942 --> 02:37:05,616 WHEN AND THEY GO THROUGH 3461 02:37:05,682 --> 02:37:08,085 EMOTIONAL ACCEPTANCE AND ENTER 3462 02:37:08,152 --> 02:37:10,654 INTO THE WILLNESS TO ENGAGE IN 3463 02:37:10,721 --> 02:37:10,988 CONVERSATIONS. 3464 02:37:11,054 --> 02:37:17,494 BUT THAT IN ITSELF CAN SOMETIMES 3465 02:37:17,561 --> 02:37:24,001 CLOSE THE AWARENESS AND MOVE TO 3466 02:37:24,067 --> 02:37:32,709 A DENIAL IN TERMS OF ACCEPTANCE 3467 02:37:32,776 --> 02:37:41,585 AND TALK ABOUT COGNITIVE 3468 02:37:41,652 --> 02:37:44,054 DECISIONS AND THEY ALSO WANT TO 3469 02:37:44,121 --> 02:37:45,856 TALK ABOUT THEIR ADVANCED 3470 02:37:45,923 --> 02:37:47,257 DIRECTIVES AND THIS CAN PUSH 3471 02:37:47,324 --> 02:37:53,130 THEM BACK TO OPEN AWARENESS. 3472 02:37:53,197 --> 02:37:56,934 WHEN I REALIZE D WHAT WAS 3473 02:37:57,000 --> 02:37:58,702 HAPPENING THEORETICALLY IT MADE 3474 02:37:58,769 --> 02:38:00,270 MORE SENSE ENTERING INTO A 3475 02:38:00,337 --> 02:38:01,538 CLINICAL CONVERSATION WHERE ONE 3476 02:38:01,605 --> 02:38:04,708 TIME WE KNOW THE ADOLESCENT'S 3477 02:38:04,775 --> 02:38:07,778 THERE AND THEY GET IT AND NEXT 3478 02:38:07,845 --> 02:38:12,850 WEEK THEY COME BACK AND IT PICK 3479 02:38:12,916 --> 02:38:14,918 UP I DYNAMIC INTERACTION OF THE 3480 02:38:14,985 --> 02:38:20,424 READINESS. 3481 02:38:20,490 --> 02:38:23,627 ONE THING WE NEED TO DO AND THIS 3482 02:38:23,694 --> 02:38:26,830 FILLS IN WITH A GAP IS LOOK AT 3483 02:38:26,897 --> 02:38:27,664 CONCEPTUAL FRAMEWORK THAT WE ALL 3484 02:38:27,731 --> 02:38:34,438 CAN STUDY ON AND THIS IS BASED 3485 02:38:34,504 --> 02:38:35,672 ON MY VISUALIZATION AND IN THE 3486 02:38:35,739 --> 02:38:37,207 BOX THERE'S LITTLE PIECES OF ALL 3487 02:38:37,274 --> 02:38:44,781 OF YOU WHO HAVE DONE RESEARCH. 3488 02:38:52,456 --> 02:38:52,756 6: 3489 02:38:54,057 --> 02:38:55,292 AND GUIDE US IN CONVERSATIONS 3490 02:38:55,359 --> 02:39:01,698 AND HAVING ITERATIVE 3491 02:39:01,765 --> 02:39:03,133 CONVERSATION IS CRUCIAL TO 3492 02:39:03,200 --> 02:39:04,735 IMPACT THEIR END OF LIFE AND 3493 02:39:04,801 --> 02:39:15,245 QUALITY OF LIFE OUTCOMES. 3494 02:39:24,621 --> 02:39:27,891 AND SUPPORTING ADOLESCENTS AND 3495 02:39:27,958 --> 02:39:30,394 YOUNG ADULTS AND A PLACE WHERE 3496 02:39:30,460 --> 02:39:32,729 WE CAN ADDRESS THE CONCERNS AS 3497 02:39:32,796 --> 02:39:35,866 THEY MOVE THROUGH END OF LIFE OR 3498 02:39:35,933 --> 02:39:39,803 IN ADVANCED DISEASE. 3499 02:39:39,870 --> 02:39:42,105 AND THEN LOOKING AT A BROADER 3500 02:39:42,172 --> 02:39:44,274 REACH INCLUDING PERHAPS SOME OF 3501 02:39:44,341 --> 02:39:48,779 OUR PATIENTS THAT ARE OUTSIDE OF 3502 02:39:48,845 --> 02:39:51,648 OUR WHEELHOUSE BUT THAT MIGHT 3503 02:39:51,715 --> 02:39:53,784 STILL BENEFIT FROM WHAT WE'RE 3504 02:39:53,850 --> 02:39:54,151 STUDYING. 3505 02:39:54,217 --> 02:39:56,653 IF YOU'RE STUDYING ONCOLOGY AND 3506 02:39:56,720 --> 02:39:58,221 INCLUDING PEOPLE WITH CYSTIC 3507 02:39:58,288 --> 02:40:00,757 FIBROSIS OR ANOTHER DISEASE THAT 3508 02:40:00,824 --> 02:40:04,861 MAY FIT. 3509 02:40:04,928 --> 02:40:06,330 PRIORITIES FOR THE FUTURE, 3510 02:40:06,396 --> 02:40:07,798 BUILDING TRUSTING RELATIONSHIP 3511 02:40:07,864 --> 02:40:09,399 AND HAVING PROSPECTIVE STUDIES 3512 02:40:09,466 --> 02:40:12,169 AND UTILIZING FRAMEWORK AND 3513 02:40:12,235 --> 02:40:14,771 EXPANDING OUR REACH TO 3514 02:40:14,838 --> 02:40:21,845 NON-MALIGNANT CONDITIONS. 3515 02:40:21,912 --> 02:40:25,983 I'D LIKE TO END WITH AN AFRICAN 3516 02:40:26,049 --> 02:40:28,352 PROVERB AND END WITH A QUOTE 3517 02:40:28,418 --> 02:40:30,087 FROM A YOUNG ADOLESCENT FROM A 3518 02:40:30,153 --> 02:40:32,422 STUDY I CONDUCT AND A COLLEAGUE 3519 02:40:32,489 --> 02:40:33,290 RECENTLY REMINDED ME OF THE 3520 02:40:33,357 --> 02:40:34,658 PROVERB THAT SAYS IF YOU WANT TO 3521 02:40:34,725 --> 02:40:37,961 GO FAST, GO ALONE, BUT IF I WANT 3522 02:40:38,028 --> 02:40:43,433 TO GO FAR, GO TOGETHER. 3523 02:40:43,500 --> 02:40:52,509 I THOUGHT IT WAS SO APPLICABLE 3524 02:40:52,576 --> 02:40:55,045 WHERE WE CAN SUPPORT PEOPLE LIKE 3525 02:40:55,112 --> 02:40:57,247 DOMINIQUE WHO SAID TOMORROW'S 3526 02:40:57,314 --> 02:40:58,482 NOT ALWAYS PROMISED I JUST WANT 3527 02:40:58,548 --> 02:41:00,884 TO LIVE UNTIL I CAN'T. 3528 02:41:00,951 --> 02:41:01,985 I LOVE SEEING THIS EVERY DAY. 3529 02:41:02,052 --> 02:41:12,229 THANK YOU. 3530 02:41:16,533 --> 02:41:17,834 >> THANK YOU. 3531 02:41:17,901 --> 02:41:23,306 WE'RE MOVING TO THE Q&A PART OF 3532 02:41:23,373 --> 02:41:23,607 THE SESSION. 3533 02:41:23,673 --> 02:41:24,541 KATE AND CINDY IF YOU CAN PUT 3534 02:41:24,608 --> 02:41:34,851 YOUR VIDEO ON. 3535 02:41:53,403 --> 02:41:56,440 I DON'T SEE ANYTHING IN THE CHAT 3536 02:41:56,506 --> 02:41:59,476 FROM THE AUDIENCE FIRST TO 3537 02:41:59,543 --> 02:42:00,777 PARTICIPANTS IF YOU HAVE 3538 02:42:00,844 --> 02:42:04,548 QUESTIONS OF EACH OTHER OR THOSE 3539 02:42:04,614 --> 02:42:08,018 PARTICIPATING YOU CAN UNMUTE AND 3540 02:42:08,085 --> 02:42:08,985 RAISE YOUR HAND IF YOU HAVE A 3541 02:42:09,052 --> 02:42:10,687 QUESTION. 3542 02:42:10,754 --> 02:42:21,131 IF NOT I'LL HAVE SOME. 3543 02:42:26,703 --> 02:42:28,071 DOES ANYONE WANT TO START? 3544 02:42:28,138 --> 02:42:29,773 I CAN START. 3545 02:42:29,840 --> 02:42:32,542 I HAVE SEVERAL QUESTIONS UNTIL 3546 02:42:32,609 --> 02:42:36,746 PEOPLE THINK OF SOME. 3547 02:42:36,813 --> 02:42:38,949 I'LL CHANGE A LITTLE BIT AND ASK 3548 02:42:39,015 --> 02:42:40,250 YOU, KATIE, SOMETHING YOU DIDN'T 3549 02:42:40,317 --> 02:42:45,956 PRESENT BUT I SAW YOU DID SOME 3550 02:42:46,022 --> 02:42:50,961 WORK ON THERE'S AN OPTION THAT 3551 02:42:51,027 --> 02:42:54,231 CAN BE IDENTIFIED AND THE FIRST 3552 02:42:54,297 --> 02:42:55,565 TO BE CHOSEN HOWEVER, IT'S 3553 02:42:55,632 --> 02:42:58,468 IMPOSSIBLE WHEN IT IS IMPOSSIBLE 3554 02:42:58,535 --> 02:43:02,506 TO ADOPT SUCH OPTION. 3555 02:43:02,572 --> 02:43:04,207 THE SITUATION CAN LEAD TO MORE 3556 02:43:04,274 --> 02:43:05,642 DISTRESS WHICH IS COMMONLY 3557 02:43:05,709 --> 02:43:09,513 RELATED TO PROLONGATION OF 3558 02:43:09,579 --> 02:43:11,515 PATIENT SUFFERING AND DIFFICULTY 3559 02:43:11,581 --> 02:43:12,916 IN COMMUNICATION AMONG TEAM 3560 02:43:12,983 --> 02:43:13,283 MEMBERS. 3561 02:43:13,350 --> 02:43:18,255 CAN YOU PLEASE TALK A LITTLE BIT 3562 02:43:18,321 --> 02:43:23,393 ABOUT HOW AND IF THERE IS COPING 3563 02:43:23,460 --> 02:43:25,695 STRATEGIES FOR MORAL DISTRESS 3564 02:43:25,762 --> 02:43:30,100 AND THOSE SUFFERING IN PICU AND 3565 02:43:30,167 --> 02:43:31,434 NICU. 3566 02:43:31,501 --> 02:43:32,469 >> THANK YOU FOR THE QUESTION. 3567 02:43:32,536 --> 02:43:35,238 IT'S A CHALLENGING AREA. 3568 02:43:35,305 --> 02:43:37,941 ONE OF THE KEY DRIVERS RELATE TO 3569 02:43:38,008 --> 02:43:41,478 A LACK OF INTERDISCIPLINARY 3570 02:43:41,545 --> 02:43:44,981 COMMUNICATION IN TERMS OF 3571 02:43:45,048 --> 02:43:46,316 DISCUSSIONS ABOUT REASONS FOR 3572 02:43:46,383 --> 02:43:48,618 AND INTENTIONS OF THERAPIES AND 3573 02:43:48,685 --> 02:43:52,022 BEING TRANSPARENT ABOUT THE 3574 02:43:52,088 --> 02:43:54,424 CONCEPT OF GOAL CONCORDANT CARE. 3575 02:43:54,491 --> 02:43:58,495 IT GETS CHALLENGE CANS AND MURKY 3576 02:43:58,562 --> 02:44:03,700 WHEN WE GET THE EXTREME ENDS OF 3577 02:44:03,767 --> 02:44:06,303 SITUATIONS WITHOUT AN EASY 3578 02:44:06,369 --> 02:44:08,972 APPLICABLE, ACCESSIBLE RECOURSE 3579 02:44:09,039 --> 02:44:13,276 FOR CHALLENGING PARENTAL 3580 02:44:13,343 --> 02:44:17,781 DIFFERENCE BUT I THINK FRAMING 3581 02:44:17,847 --> 02:44:21,651 AND EXPLAINING TO STAFF IS ONE 3582 02:44:21,718 --> 02:44:26,890 STEP TO ADDRESS AND PREVENT 3583 02:44:26,957 --> 02:44:31,061 MORAL DISTRESS AND THERE'S BEEN 3584 02:44:31,127 --> 02:44:33,930 THE CONCEPT OF MORAL DIFFERENCE 3585 02:44:33,997 --> 02:44:35,432 VERSUS MORAL DISTRESS AND THE 3586 02:44:35,498 --> 02:44:37,200 WAY TO MAKE IT MORE EXPLICIT IS 3587 02:44:37,267 --> 02:44:43,873 IS WE INCREASING ETHICS LITERACY 3588 02:44:43,940 --> 02:44:45,775 AROUND WHAT GOAL CONCORDANT CARE 3589 02:44:45,842 --> 02:44:50,947 IS AND I THINK INCREASING 3590 02:44:51,014 --> 02:44:52,115 INTERDISCIPLINARY COMMUNICATION 3591 02:44:52,182 --> 02:44:53,049 AND TRANSPARENCY WITHIN THE TEAM 3592 02:44:53,116 --> 02:44:54,951 IS ONE IMPORTANT THING AND THE 3593 02:44:55,018 --> 02:44:57,387 OTHER IS BEING TRANSPARENT WITH 3594 02:44:57,454 --> 02:44:59,489 FAMILIES ABOUT REALISTICALLY 3595 02:44:59,556 --> 02:45:02,959 FRAMING THE FEASIBILITY OF 3596 02:45:03,026 --> 02:45:04,594 ACHIEVING GOAL. 3597 02:45:04,661 --> 02:45:08,265 THAT NEEDS TO BE AT THE 3598 02:45:08,331 --> 02:45:09,099 FOREFRONT AS DOES PROVIDING THAT 3599 02:45:09,165 --> 02:45:17,774 FEEDBACK THROUGHOUT THE TEAM. 3600 02:45:17,841 --> 02:45:18,842 >> THANK YOU. 3601 02:45:18,908 --> 02:45:20,744 YOU CAN UNMUTE AND ASK YOUR 3602 02:45:20,810 --> 02:45:30,987 QUESTION. 3603 02:45:31,254 --> 02:45:32,989 >> THANK YOU FOR THE WORK AND 3604 02:45:33,056 --> 02:45:38,295 KATIE YOU TALKED ABOUT CONFLICT 3605 02:45:38,361 --> 02:45:42,432 AND IT SEEMS TO ME ONE OF THE 3606 02:45:42,499 --> 02:45:44,968 AREAS TO DEVELOP IS LESS ABOUT 3607 02:45:45,035 --> 02:45:47,837 ETHIC AND SIMPLY MANAGING 3608 02:45:47,904 --> 02:45:48,104 CONFLICT. 3609 02:45:48,171 --> 02:45:50,373 WHY WOULD WE DO THAT? 3610 02:45:50,440 --> 02:45:56,146 CAN'T WE SOLVE IT ALL BY BETTER 3611 02:45:56,212 --> 02:46:06,589 ETHICAL DELIBERATION? 3612 02:46:09,092 --> 02:46:11,961 AND THINK ABOUT ADJUDICATING 3613 02:46:12,028 --> 02:46:12,696 CONFLICT. 3614 02:46:12,762 --> 02:46:13,897 >> I BELIEVE HIGH-QUALITY 3615 02:46:13,963 --> 02:46:14,831 COMMUNICATION AND MEDIATION 3616 02:46:14,898 --> 02:46:16,499 STRATEGIES WILL GO A LONG WAY TO 3617 02:46:16,566 --> 02:46:26,876 PREVENT CONFLICT. 3618 02:46:28,645 --> 02:46:29,479 AND HOLDING PATIENTS AT THE 3619 02:46:29,546 --> 02:46:36,886 CENTER AND TRYING TO HAVE A 3620 02:46:36,953 --> 02:46:37,921 PREEMPTIVE CONVERSATION GO A 3621 02:46:37,987 --> 02:46:40,090 LONG WAY WITH A PROCESS-BASED 3622 02:46:40,156 --> 02:46:41,691 APPROACH AND FRAMING THESE 3623 02:46:41,758 --> 02:46:43,993 DECISIONS AS BEING MORE 3624 02:46:44,060 --> 02:46:46,296 LEGITIMATE BECAUSE THEY FOLLOWED 3625 02:46:46,363 --> 02:46:47,864 THE APPROACHES WHICH SEEM TO BE 3626 02:46:47,931 --> 02:46:50,967 MORE ROBUST TO GROUP THINK AND 3627 02:46:51,034 --> 02:46:51,634 IMPLICIT BIASES. 3628 02:46:51,701 --> 02:46:56,740 THAT WILL GO A LONG WAY TO 3629 02:46:56,806 --> 02:47:00,276 PREVENTING CONFLICT. 3630 02:47:00,343 --> 02:47:02,011 YOU THINK IT'S INEVITABLE 3631 02:47:02,078 --> 02:47:04,214 CONFLICT WILL HAPPEN BECAUSE 3632 02:47:04,280 --> 02:47:08,284 WE'RE A PLURALIST SOCIETY AND 3633 02:47:08,351 --> 02:47:10,153 THERE NEEDS TO BE A PATH MORE 3634 02:47:10,220 --> 02:47:12,756 ACCESSIBLE AND PRACTICAL FOR 3635 02:47:12,822 --> 02:47:13,990 CLINICIANS TO THINK ABOUT A PATH 3636 02:47:14,057 --> 02:47:19,229 TO ADDRESS IT. 3637 02:47:19,295 --> 02:47:21,598 I THINK AND I HOPE THAT WITH 3638 02:47:21,664 --> 02:47:25,535 ENGAGING PALLIATIVE CARE AND 3639 02:47:25,602 --> 02:47:26,136 ETHICS CONSULTATION EARLY, 3640 02:47:26,202 --> 02:47:28,204 TRAINING THE NEXT GENERATION 3641 02:47:28,271 --> 02:47:33,176 WITH SOME OF THE SKILLS SO 3642 02:47:33,243 --> 02:47:36,346 THEY'RE ARMED TO BE ABLE TO 3643 02:47:36,413 --> 02:47:38,348 DEVELOP THERAPEUTIC 3644 02:47:38,415 --> 02:47:41,317 RELATIONSHIPS WITH FAMILIES AND 3645 02:47:41,384 --> 02:47:43,253 MINIMIZE CONFLICT SO WE CAN 3646 02:47:43,319 --> 02:47:44,754 COLLABORATIVELY DEFINE WHAT IS 3647 02:47:44,821 --> 02:47:50,393 IN THE CHILD'S BEST INTEREST. 3648 02:47:50,460 --> 02:47:53,096 I STILL THINK IF WE DO IT 3649 02:47:53,163 --> 02:47:56,132 PERFECTLY AND FANTASTIC 3650 02:47:56,199 --> 02:47:56,866 COMMUNICATORS ULTIMATELY THERE 3651 02:47:56,933 --> 02:48:07,310 BE CONFLICT AT TIMES. 3652 02:48:08,144 --> 02:48:11,881 EVACUATE AN EXIT STRATEGY AND 3653 02:48:11,948 --> 02:48:16,152 WE'RE INCREASINGLY FACING STICKY 3654 02:48:16,219 --> 02:48:18,154 ETHICAL DECISIONS IN TERMS OF 3655 02:48:18,221 --> 02:48:21,458 HOW TO PROVIDE AN ETHICALLY 3656 02:48:21,524 --> 02:48:22,926 SUPPORTED PATH FORWARD FOR 3657 02:48:22,992 --> 02:48:24,661 PATIENTS AND FAMILIES. 3658 02:48:24,727 --> 02:48:27,697 IT'S NOT AN EXACT ANSWER TO YOUR 3659 02:48:27,764 --> 02:48:27,964 QUESTION. 3660 02:48:28,031 --> 02:48:29,065 I HOPE WE CAN AVOID IT THROUGH 3661 02:48:29,132 --> 02:48:30,733 THE STRATEGY US MENTIONED BUT I 3662 02:48:30,800 --> 02:48:32,669 THINK ULTIMATELY THERE NEEDS TO 3663 02:48:32,735 --> 02:48:40,143 BE A PATH FOR CONFLICT. 3664 02:48:40,210 --> 02:48:41,478 >> MAKING SURE WE DON'T BELIEVE 3665 02:48:41,544 --> 02:48:43,246 CONFLICT AS A FOUR-LETTER WORD 3666 02:48:43,313 --> 02:48:49,152 AND AMONGST THE TEAM NOT JUST 3667 02:48:49,219 --> 02:48:52,856 CONFLICT BETWEEN THE TEAM AND 3668 02:48:52,922 --> 02:48:57,994 PARENTS BUT NOT ABANDON IT AND 3669 02:48:58,061 --> 02:49:00,730 AN AGREE AND THANK YOU FOR THAT 3670 02:49:00,797 --> 02:49:05,034 ANSWER. 3671 02:49:05,101 --> 02:49:11,007 ONE KEY THING IS CREATING THE 3672 02:49:11,074 --> 02:49:16,412 LITERACY AROUND WHAT GOAL 3673 02:49:16,479 --> 02:49:19,449 CONCORDANT CARE IS. 3674 02:49:19,516 --> 02:49:20,717 AND LOOKING AT THE TEAMS AND 3675 02:49:20,783 --> 02:49:26,422 FAMILIES IS A KEY STEP. 3676 02:49:26,489 --> 02:49:28,525 >> IS THERE ANYTHING YOU WANT TO 3677 02:49:28,591 --> 02:49:29,559 ADD TO THIS? 3678 02:49:29,626 --> 02:49:30,927 I SEE YOU HAVE BEEN ABLE TO GET 3679 02:49:30,994 --> 02:49:35,965 THE VIDEO. 3680 02:49:36,032 --> 02:49:39,068 >> I'M NOT GOING TO ADD ANYTHING 3681 02:49:39,135 --> 02:49:40,570 SINCE IT WAS PROBABLY ALREADY 3682 02:49:40,637 --> 02:49:48,077 TALKED ABOUT. 3683 02:49:48,144 --> 02:49:50,480 GIVEN ALL THE INSIGHT FROM ALL 3684 02:49:50,547 --> 02:49:52,582 THE LITERATURE AND HOW YOU 3685 02:49:52,649 --> 02:49:57,353 CONSOLIDATED IT, HOW SHOULD WE 3686 02:49:57,420 --> 02:49:59,188 GET PEOPLE TO START IMPLEMENTING 3687 02:49:59,255 --> 02:50:00,723 HAVING DIFFICULT CONVERSATIONS. 3688 02:50:00,790 --> 02:50:03,359 THEY CAN FEEL SCARY THOUGH YOU 3689 02:50:03,426 --> 02:50:05,728 OFFERED PLENTY OF EVIDENCE THE 3690 02:50:05,795 --> 02:50:07,297 ADOLESCENTS AND YOUNG ADULTS 3691 02:50:07,363 --> 02:50:10,800 WANT THEM, HOW DO WE GO FROM 3692 02:50:10,867 --> 02:50:12,101 MORE RESEARCH TO MORE 3693 02:50:12,168 --> 02:50:15,805 IMPLEMENTATION AND BETTER 3694 02:50:15,872 --> 02:50:16,739 PRACTICE? 3695 02:50:16,806 --> 02:50:22,045 >> I LOVE THAT QUESTION. 3696 02:50:22,111 --> 02:50:27,183 I WOULD SAY SIMPLY CAN I TALK TO 3697 02:50:27,250 --> 02:50:28,985 YOU ABOUT THIS AND SEEKING THE 3698 02:50:29,052 --> 02:50:29,385 OPPORTUNITY. 3699 02:50:29,452 --> 02:50:30,887 IT'S A BEAUTIFUL WAY TO ENTER 3700 02:50:30,954 --> 02:50:35,792 INTO A SPACE AND ALLOW THEM TO 3701 02:50:35,858 --> 02:50:37,393 GIVE VOICE I'VE SAID THINGS LIKE 3702 02:50:37,460 --> 02:50:41,297 WE LEARNED SOME ADOLESCENTS WITH 3703 02:50:41,364 --> 02:50:44,734 MORE ADVANCED DISEASE THAN 3704 02:50:44,801 --> 02:50:49,372 YOURS. 3705 02:50:49,439 --> 02:50:50,707 THEY'VE EXPRESSED CONCERNS ABOUT 3706 02:50:50,773 --> 02:50:51,608 X, Y OR Z. 3707 02:50:51,674 --> 02:50:54,644 IS IT OKAY IF I TALK TO YOU 3708 02:50:54,711 --> 02:50:55,445 ABOUT THAT? 3709 02:50:55,511 --> 02:50:57,614 CAN YOU TELL ME MORE AND SEEKING 3710 02:50:57,680 --> 02:51:02,018 PERMISSION AND ENTERING THE 3711 02:51:02,085 --> 02:51:03,620 SPACE YOU CREATE IN THE CLINICAL 3712 02:51:03,686 --> 02:51:06,923 SETTINGS TA ALLOWS YOU TO GO 3713 02:51:06,990 --> 02:51:09,192 THERE -- THAT ALLOWS US TO GO 3714 02:51:09,258 --> 02:51:09,392 THERE. 3715 02:51:09,459 --> 02:51:11,828 WE NEED TO LOOK HONESTLY AT 3716 02:51:11,894 --> 02:51:17,033 TIMES WHEN WE SHOULD DOWN THOSE 3717 02:51:17,100 --> 02:51:27,343 CONVERSAT 3718 02:51:29,612 --> 02:51:31,147 CONVERSATIONS SO THE CHANCES OF 3719 02:51:31,214 --> 02:51:33,416 CURE ARE X, Y AND Z. 3720 02:51:33,483 --> 02:51:34,484 IN USUAL SOCIAL CONSTRAINT WE 3721 02:51:34,550 --> 02:51:36,686 SHUT DOWN THE CONVERSATIONS AND 3722 02:51:36,753 --> 02:51:41,257 LOSE THE OPPORTUNITY. 3723 02:51:41,324 --> 02:51:44,794 I THINK JUST BEING FLEXIBLE AND 3724 02:51:44,861 --> 02:51:45,862 TEACHING OPEN AWARENESS AND 3725 02:51:45,928 --> 02:51:50,800 WHERE THEY WANT TO PROCESS SOME 3726 02:51:50,867 --> 02:51:55,071 EMOTIONS WITH YOU OR WITH 3727 02:51:55,138 --> 02:51:55,838 ANOTHER CLINICIAN AND 3728 02:51:55,905 --> 02:51:57,140 RECOGNIZING IT'S A HARD SPACE TO 3729 02:51:57,206 --> 02:51:58,007 BE IN. 3730 02:51:58,074 --> 02:51:59,342 RECOGNIZING INSIDE OF YOU WHEN 3731 02:51:59,409 --> 02:52:02,979 YOU WANT TO JUST SHUT IT DOWN 3732 02:52:03,046 --> 02:52:08,618 BECAUSE IT'S TOO HARD FOR YOU 3733 02:52:08,685 --> 02:52:11,921 BUT REALIZE IT'S THEIR SPACE TO 3734 02:52:11,988 --> 02:52:15,124 PROCESS IT AND HONING IN OTHER 3735 02:52:15,191 --> 02:52:16,726 OTHER EXPERTS THAT CAN HELP WITH 3736 02:52:16,793 --> 02:52:18,227 THE PSYCHOLOGICAL THINGS THEY'RE 3737 02:52:18,294 --> 02:52:19,228 GOING THROUGH IS CRITICAL. 3738 02:52:19,295 --> 02:52:21,097 DOES THAT ANSWER YOUR QUESTION, 3739 02:52:21,164 --> 02:52:21,564 CHRIS? 3740 02:52:21,631 --> 02:52:23,266 >> BEAUTIFULLY. 3741 02:52:23,332 --> 02:52:24,033 THERE'S MORE RESEARCH TO DO IN 3742 02:52:24,100 --> 02:52:24,600 THE IMPLEMENTATION SCIENCE 3743 02:52:24,667 --> 02:52:34,777 SPACE. 3744 02:52:38,614 --> 02:52:40,349 >> WE'RE AT THE POINT WHERE WE 3745 02:52:40,416 --> 02:52:42,085 IDENTIFY BARRIERS AND 3746 02:52:42,151 --> 02:52:42,418 FACILITATORS. 3747 02:52:42,485 --> 02:52:45,521 WE HAVE FRAMEWORKS. 3748 02:52:45,588 --> 02:52:50,193 WE ARE CLOSER THIS THE 3749 02:52:50,259 --> 02:52:50,560 IMPLEMENTATION. 3750 02:52:50,626 --> 02:52:52,929 WE HAVE A QUESTION FROM THE 3751 02:52:52,995 --> 02:52:53,196 VIDEOCAST. 3752 02:52:53,262 --> 02:52:57,166 CAN YOU TALK ABOUT ECMO AND AT 3753 02:52:57,233 --> 02:53:04,006 THE START OF THE DISCUSSION AND 3754 02:53:04,073 --> 02:53:09,679 APPROACHES TO COMFORT CARE AND 3755 02:53:09,746 --> 02:53:12,181 SHOULD WE HAVE AN INSTITUTION 3756 02:53:12,248 --> 02:53:16,853 WHERE BEFORE STARTING IT THE 3757 02:53:16,919 --> 02:53:17,954 PALLIATIVE CARE CONSULT WAS 3758 02:53:18,020 --> 02:53:18,287 MANDATORY. 3759 02:53:18,354 --> 02:53:19,222 DO YOU THINK IT SHOULD BE PART 3760 02:53:19,288 --> 02:53:21,657 OF WHAT WE DO? 3761 02:53:21,724 --> 02:53:24,727 >> YEAH, THANKS FOR THE 3762 02:53:24,794 --> 02:53:31,868 QUESTION. 3763 02:53:31,934 --> 02:53:35,738 I HAD CONVERSATIONS WITH ECMO 3764 02:53:35,805 --> 02:53:39,542 AND AS THE CASES WHERE WE LACK 3765 02:53:39,609 --> 02:53:41,511 THE OPPORTUNITY TO DO THAT 3766 02:53:41,577 --> 02:53:44,247 BECAUSE IT'S AN INSTITUTED 3767 02:53:44,313 --> 02:53:44,747 THERAPY. 3768 02:53:44,814 --> 02:53:50,453 WHILE IDEALLY I WOULD LOVE THE 3769 02:53:50,520 --> 02:53:53,122 PREEMPTIVE ASPECTS ECMO IS A 3770 02:53:53,189 --> 02:53:56,159 COMMON REASON FOR THE THERAPY. 3771 02:53:56,225 --> 02:53:58,194 WE NEED A PATH TO DEAL WITH 3772 02:53:58,261 --> 02:54:08,805 THINGS ONCE THE BALL IS ROLLING. 3773 02:54:10,706 --> 02:54:16,112 IT'S IMPORTANT IN THE PAPER WE 3774 02:54:16,179 --> 02:54:19,048 WROTE WE PRESENTED IT AS A 3775 02:54:19,115 --> 02:54:21,684 BRIDGE TOWARDS DEFINING A GOAL 3776 02:54:21,751 --> 02:54:24,387 AND USING TIME-LIMITED TRIAL IS 3777 02:54:24,453 --> 02:54:25,855 ANOTHER PATH OR EXAMPLE OF A WAY 3778 02:54:25,922 --> 02:54:27,557 TO FRAME WITH FAMILIES THAT THIS 3779 02:54:27,623 --> 02:54:32,361 IS THE FIRST THERAPY WE'RE DOING 3780 02:54:32,428 --> 02:54:34,430 FOR SPECIFIC PURPOSE RATHER THAN 3781 02:54:34,497 --> 02:54:36,132 AN INDEFINITE MACHINE. 3782 02:54:36,199 --> 02:54:36,833 I THINK THOSE THINGS ARE SUPER 3783 02:54:36,899 --> 02:54:47,076 IMPORTANT. 3784 02:54:51,681 --> 02:54:53,282 I THINK PALLIATIVE CARE SKILLS 3785 02:54:53,349 --> 02:55:00,256 SHOULD BE A CORE COMPETENCY CARE 3786 02:55:00,323 --> 02:55:00,556 CLINICIANS. 3787 02:55:00,623 --> 02:55:01,224 WHILE I APPRECIATE SUB SPECIALTY 3788 02:55:01,290 --> 02:55:03,326 CARE AND PEOPLE I CAN LEAN ON IN 3789 02:55:03,392 --> 02:55:04,627 MY INSTITUTION IT'S NOT 3790 02:55:04,694 --> 02:55:09,532 SOMETHING EVERYONE'S LUCKY 3791 02:55:09,599 --> 02:55:12,735 ENOUGH TO HAVE. 3792 02:55:12,802 --> 02:55:15,471 THESE ARE SKILLS WE NEED TO 3793 02:55:15,538 --> 02:55:16,706 TRAIN IN THE NEXT GENERATION OF 3794 02:55:16,772 --> 02:55:17,773 TRAINEES AND SOMETHING WE NEED 3795 02:55:17,840 --> 02:55:19,742 TO DO. 3796 02:55:19,809 --> 02:55:22,745 IF YOU CAN HAVE PALLIATIVE CARE 3797 02:55:22,812 --> 02:55:25,882 INVOLVEMENT FOR ALL PATIENTS ON 3798 02:55:25,948 --> 02:55:27,783 ECMO WOULD BE WONDERFUL BUT 3799 02:55:27,850 --> 02:55:29,218 WON'T BE FEASIBLE FOR ALL 3800 02:55:29,285 --> 02:55:32,755 CENTER. 3801 02:55:32,822 --> 02:55:35,291 >> WE'RE ALMOST AT THE HOUR. 3802 02:55:35,358 --> 02:55:37,126 I DON'T KNOW IF YOU CAN BRIEFLY 3803 02:55:37,193 --> 02:55:38,828 ANSWER THIS QUESTION. 3804 02:55:38,895 --> 02:55:41,264 CAN YOU SPEAK MORE ABOUT MORAL 3805 02:55:41,330 --> 02:55:41,797 DIFFERENCES VERSUS MORAL 3806 02:55:41,864 --> 02:55:48,304 DISTRESS? 3807 02:55:48,371 --> 02:55:50,573 >> THERE'S WORK AND THERE WAS 3808 02:55:50,640 --> 02:55:54,944 THE CONCEPT COINED BUT A MORAL 3809 02:55:55,011 --> 02:55:56,846 DIFFERENCE RELATES TO GOAL 3810 02:55:56,913 --> 02:55:57,580 CONCORDANT CARE. 3811 02:55:57,647 --> 02:55:59,415 THE FACT WE'RE SUPPOSED TO BE 3812 02:55:59,482 --> 02:56:02,251 ALIGN WITH FAMILIES ON THE PATH 3813 02:56:02,318 --> 02:56:03,953 AND THE WHOLE POINT OF 3814 02:56:04,020 --> 02:56:06,555 CONCORDANT CARE IS WE DO THINGS 3815 02:56:06,622 --> 02:56:12,428 THAT IS VALUE- ALIGNED WITH 3816 02:56:12,495 --> 02:56:13,629 PATIENTS AND FAMILIES AND THOUGH 3817 02:56:13,696 --> 02:56:15,898 IT MAY NOT BE SOMETHING WE DO 3818 02:56:15,965 --> 02:56:18,567 FOR OUR LOVED ONES OR WANT FOR 3819 02:56:18,634 --> 02:56:20,569 OURSELVES AND DO HAVE OUR VALUES 3820 02:56:20,636 --> 02:56:25,908 AS PROVEDERS, WE NEED TO 3821 02:56:25,975 --> 02:56:29,979 ACKNOWLEDGE THERE'S POERL -- 3822 02:56:30,046 --> 02:56:32,748 MORAL DIFFERENCES AND NOT 3823 02:56:32,815 --> 02:56:34,984 RELATED TO MORAL DISTRESS WHEN 3824 02:56:35,051 --> 02:56:37,186 YOUR FORCED TO PROVIDE CARE NOT 3825 02:56:37,253 --> 02:56:42,558 ALIGNED WITH YOUR MORAL COMPASS 3826 02:56:42,625 --> 02:56:45,394 AND TRY ALIGN WITH FAMILIES ON 3827 02:56:45,461 --> 02:56:47,630 THIS PATH. 3828 02:56:47,697 --> 02:56:48,264 THERE'S EXTREME CIRCUMSTANCES 3829 02:56:48,331 --> 02:56:49,832 WHERE THE PROFESSIONAL INTEGRITY 3830 02:56:49,899 --> 02:56:51,600 AND RESPONSIBILITY TO THE CHILD 3831 02:56:51,667 --> 02:56:56,706 COMES INTO CONFLICT BUT A LOT OF 3832 02:56:56,772 --> 02:57:06,716 THE WAY AND ARTICULATE AND 3833 02:57:06,782 --> 02:57:08,951 DISCUSS AND PALLIATIVE CARE 3834 02:57:09,018 --> 02:57:11,087 LITERACY AROUND GOAL CONCORDANT 3835 02:57:11,153 --> 02:57:11,287 CARE. 3836 02:57:11,354 --> 02:57:16,525 >> I WANT TO THANK THE 3837 02:57:16,592 --> 02:57:20,296 PRESENTERS FOR THEIR GREAT TALK. 3838 02:57:20,363 --> 02:57:27,069 WE'LL MOVE TO THE NEXT SESSION. 3839 02:57:27,136 --> 02:57:37,446 >> THANK YOU ALL. 3840 02:57:38,848 --> 02:57:48,958 [NO AUDIO] 3841 02:58:00,603 --> 02:58:04,407 >> I'M GOING TO SHARE MY SCREEN 3842 02:58:04,473 --> 02:58:05,941 WHICH I'M SORT OF 3843 02:58:06,008 --> 02:58:06,976 TECHNOLOGICALLY CHALLENGED SO 3844 02:58:07,043 --> 02:58:08,411 EVEN THIS WHICH IS THE EASIEST 3845 02:58:08,477 --> 02:58:11,514 THING YOU'RE SUPPOSED TO BE ABLE 3846 02:58:11,580 --> 02:58:20,189 TO DO MAY TAKE ME A SEC. 3847 02:58:20,256 --> 02:58:20,456 ALL RIGHT. 3848 02:58:20,523 --> 02:58:29,498 CAN PEOPLE SEE? 3849 02:58:29,565 --> 02:58:32,068 SO THANK YOU, TESSIE AND NICHD 3850 02:58:32,134 --> 02:58:36,472 FOR SPONSORING THIS WORKSHOP AND 3851 02:58:36,539 --> 02:58:38,841 REALLY FOR ALLOWING US TO HAVE 3852 02:58:38,908 --> 02:58:42,411 THE IMPORTANT CONVERSATIONS 3853 02:58:42,478 --> 02:58:45,381 ABOUT RESEARCH NEEDS FOR 3854 02:58:45,448 --> 02:58:46,015 PEDIATRIC PALLIATIVE CARE AND 3855 02:58:46,082 --> 02:58:52,188 WHAT THAT MEANS FOR THE 3856 02:58:52,254 --> 02:58:52,455 WORKFORCE. 3857 02:58:52,521 --> 02:59:03,032 MY -- WE HAVE LISTENED TO THE 3858 02:59:21,217 --> 02:59:23,252 PRESENTATION AND INSPIRED AND 3859 02:59:23,319 --> 02:59:25,321 THRILLED I KNOW SO MANY OF THE 3860 02:59:25,387 --> 02:59:26,322 INVESTIGATORS AND CLINICIANS AND 3861 02:59:26,388 --> 02:59:27,823 PEOPLE ON THE CALL. 3862 02:59:27,890 --> 02:59:30,126 ON ONE HAND IT'S INSPIRING. 3863 02:59:30,192 --> 02:59:34,430 ON THE OTHER HAND SOBERING. 3864 02:59:34,497 --> 02:59:38,968 I AM NOT OLD ENOUGH TO FEEL LIKE 3865 02:59:39,034 --> 02:59:41,237 I SHOULD KNOW THE FIELD BUT WE 3866 02:59:41,303 --> 02:59:41,804 ARE YOUNG. 3867 02:59:41,871 --> 02:59:44,740 THE FIELD STARTED FIRST 3868 02:59:44,807 --> 02:59:48,344 RECOGNIZED WE THE AMERICAN BOARD 3869 02:59:48,410 --> 02:59:54,950 OF MEDICAL SPECIALTIES TO A 3870 02:59:55,017 --> 02:59:59,588 FIELD THAT STARTED IN 1974. 3871 02:59:59,655 --> 03:00:02,958 WE KNOW SOMEWHERE THERE ARE 3872 03:00:03,025 --> 03:00:04,093 PEDIATRIC PALLIATIVE CARE 3873 03:00:04,160 --> 03:00:09,465 SERVICES NOTICE -- IN THE 3874 03:00:09,532 --> 03:00:12,735 UNITED STATES AND 80% OF 3875 03:00:12,801 --> 03:00:13,702 CHILDREN'S HOSPITAL REPORT SOME 3876 03:00:13,769 --> 03:00:14,770 TYPE OF PEDIATRIC PALLIATIVE 3877 03:00:14,837 --> 03:00:14,970 CARE. 3878 03:00:15,037 --> 03:00:20,009 THE DIFFICULTY IS WE DON'T KNOW 3879 03:00:20,075 --> 03:00:23,078 WHAT THOSE PROGRAMS CONSIST OF 3880 03:00:23,145 --> 03:00:25,314 IN TERMS OF STAFFING AND KNOW 3881 03:00:25,381 --> 03:00:26,515 STAFFING REMAINS VARIABLE AT THE 3882 03:00:26,582 --> 03:00:27,917 PROGRAMS AND THE MAJORITY ARE 3883 03:00:27,983 --> 03:00:29,818 NOT MEETING WHAT WE COULD 3884 03:00:29,885 --> 03:00:30,386 CONSIDER NATIONAL CLINICAL 3885 03:00:30,452 --> 03:00:38,727 STANDARDS. 3886 03:00:38,794 --> 03:00:40,462 DEFINING THE NEED AND WE HEARD 3887 03:00:40,529 --> 03:00:41,697 ABOUT THE NEED FOR PALLIATIVE 3888 03:00:41,764 --> 03:00:44,099 CARE AND THE IMPORTANCE FOR 3889 03:00:44,166 --> 03:00:48,270 PALLIATIVE CARE AND THE AREAS IN 3890 03:00:48,337 --> 03:00:52,007 WHICH PALLIATIVE CARE IS VITAL. 3891 03:00:52,074 --> 03:00:55,511 THIS IS FROM ANAR IN A PUBLIC 3892 03:00:55,578 --> 03:00:56,078 AWARENESS CAMPAIGN CALLED 3893 03:00:56,145 --> 03:01:00,716 CONVERSATIONS MATTER. 3894 03:01:00,783 --> 03:01:03,953 THERE WAS A PEDIATRIC PALLIATIVE 3895 03:01:04,019 --> 03:01:06,422 CARE COMPONENT AND WHAT WAS 3896 03:01:06,488 --> 03:01:09,925 PROMOTED TO FAMILIES AND 3897 03:01:09,992 --> 03:01:13,529 SYMPTOMS AND DISCOMFORT OF 3898 03:01:13,596 --> 03:01:17,566 STRESS CAN GIVE YOU SUPPORT, 3899 03:01:17,633 --> 03:01:18,367 EASE PAIN AND SUFFERING AND 3900 03:01:18,434 --> 03:01:21,637 PROVIDE EMOTIONAL AND SOCIAL 3901 03:01:21,704 --> 03:01:23,472 SUPPORT THAT SUPPORTS YOUR VALUE 3902 03:01:23,539 --> 03:01:26,976 AND CULTURE AND HELP PROVIDERS 3903 03:01:27,042 --> 03:01:27,910 WORK TOGETHER. 3904 03:01:27,977 --> 03:01:28,777 START OPEN DISCUSSION WITH YOUR 3905 03:01:28,844 --> 03:01:38,487 TEAM ABOUT OPTION FOR CARE. 3906 03:01:38,554 --> 03:01:40,022 THIS LEVEL CAN BE WRAP AROUND 3907 03:01:40,089 --> 03:01:45,294 FOR CHILDREN AND YOU THINK THIS 3908 03:01:45,361 --> 03:01:48,864 IS AN AMAZING TOOL FOR ALL 3909 03:01:48,931 --> 03:01:53,269 CHILDREN WITH SERIOUS ILLNESS. 3910 03:01:53,335 --> 03:01:58,107 WE TALK ABOUT SERIOUS ILLNESS 3911 03:01:58,173 --> 03:02:01,110 AND WE HEARD ABOUT IT A LOT OVER 3912 03:02:01,176 --> 03:02:06,749 THE LAST COUPLE DAYS WE SHOULD 3913 03:02:06,815 --> 03:02:08,684 BE ADVOCATING FOR PALLIATIVE 3914 03:02:08,751 --> 03:02:09,618 CARE INVOLVEMENT AND WE HEARD 3915 03:02:09,685 --> 03:02:12,354 ABOUT AUTOMATIC CONSULTS AND 3916 03:02:12,421 --> 03:02:18,127 MANDATORY AND TRIGGER CONSULTS 3917 03:02:18,193 --> 03:02:20,929 OR INVOLVEMENT OF PALLIATIVE 3918 03:02:20,996 --> 03:02:24,733 CARE AND WE THINK OF IT AS A 3919 03:02:24,800 --> 03:02:28,737 WIDE SCOPE. 3920 03:02:28,804 --> 03:02:32,174 WE HEARD ABOUT AND WHAT CRITERIA 3921 03:02:32,241 --> 03:02:33,342 WE SHOULD THINK OF CONSULTATION 3922 03:02:33,409 --> 03:02:35,277 FOR IMPROVED CARE FOR PERINATAL 3923 03:02:35,344 --> 03:02:40,082 AND NEONATAL AND ALL CHILDREN IN 3924 03:02:40,149 --> 03:02:41,383 ICU WHO HAVE SERIOUS ILLNESS AND 3925 03:02:41,450 --> 03:02:42,284 CHILDREN WITH MEDICAL COMPLEXITY 3926 03:02:42,351 --> 03:02:44,953 AND THE IMPORTANCE OF 3927 03:02:45,020 --> 03:02:48,924 INTEGRATING FAMILIES AND 3928 03:02:48,991 --> 03:02:49,758 SIBLINGS IN THE PALLIATIVE CARE 3929 03:02:49,825 --> 03:02:52,394 MOVING FORWARD AND THERE'S A 3930 03:02:52,461 --> 03:02:53,629 GROWING POPULATION OF CHILDREN 3931 03:02:53,696 --> 03:02:56,298 TECHNOLOGY DEPENDENT AND THERE'S 3932 03:02:56,365 --> 03:02:58,000 CANCER AND THERE'S CONGENITAL 3933 03:02:58,067 --> 03:02:59,068 HEART DISEASE AND WE'RE TAKING 3934 03:02:59,134 --> 03:03:02,271 CARE OF ADULTS WITH CONGENITAL 3935 03:03:02,338 --> 03:03:03,739 HEART DISEASE AND THE LIST GOES 3936 03:03:03,806 --> 03:03:08,744 UPON WHEN YOU HEAR THIS, YOU 3937 03:03:08,811 --> 03:03:09,345 THINK, WOW. 3938 03:03:09,411 --> 03:03:10,412 WE TALKED ABOUT MORAL DISTRESS 3939 03:03:10,479 --> 03:03:13,282 IN THE LAST SESSION AND THE 3940 03:03:13,349 --> 03:03:19,588 DISTRESS WE FEEL AS CLINICIANS 3941 03:03:19,655 --> 03:03:22,458 AND PEOPLE WHO WE DON'T THINK 3942 03:03:22,524 --> 03:03:23,959 CAN PROVIDE THE CARE TO PEOPLE 3943 03:03:24,026 --> 03:03:25,694 THAT ARE IMPORTANT AND FAMILY 3944 03:03:25,761 --> 03:03:31,100 MEMBERS WHO WOULD BENEFIT FROM 3945 03:03:31,166 --> 03:03:35,104 THIS CARE WHAT DO WE DO WITH ALL 3946 03:03:35,170 --> 03:03:39,708 THAT? 3947 03:03:39,775 --> 03:03:41,810 IT'S THE BEGINNING OF WORKFORCE 3948 03:03:41,877 --> 03:03:42,578 BURNOUT AND DISTRESS. 3949 03:03:42,644 --> 03:03:44,213 HOW DO WE MANAGE ALL THE THINGS 3950 03:03:44,279 --> 03:03:48,250 WE'RE DOING AND AT THE SAME TIME 3951 03:03:48,317 --> 03:03:49,418 THINKING ABOUT ADVANCING THE 3952 03:03:49,485 --> 03:03:49,985 IMPORTANT QUESTIONS MOVING 3953 03:03:50,052 --> 03:03:59,328 FORWARD. 3954 03:03:59,395 --> 03:04:01,397 WHAT I'VE LEARNED IS THE WORDS 3955 03:04:01,463 --> 03:04:02,798 WE USED FIRST SEEING FAMILIES 20 3956 03:04:02,865 --> 03:04:06,335 YEARS AGO AND COLLEAGUES AND TRY 3957 03:04:06,402 --> 03:04:11,407 TO CONVINCE EVERYONE PALLIATIVE 3958 03:04:11,473 --> 03:04:16,078 CARE IS IS AN IMPORTANT 3959 03:04:16,145 --> 03:04:18,347 NECESSARY CARE TO THOSE WE'RE 3960 03:04:18,414 --> 03:04:20,983 SEEK WE TAUGHT OUR FELLOWS, HOW 3961 03:04:21,049 --> 03:04:23,986 CAN WE HELP YOU? 3962 03:04:24,052 --> 03:04:27,122 WE SHIFTED THAT WORDING TO 3963 03:04:27,189 --> 03:04:28,123 SOMETHING MORE PRACTICAL WHILE 3964 03:04:28,190 --> 03:04:30,592 THIS IS WITHIN OUR TRAINING AND 3965 03:04:30,659 --> 03:04:32,394 SKILL SET IT'S NOT WITHIN THE 3966 03:04:32,461 --> 03:04:35,764 SCOPE OF OUR CURRENT CLINICAL 3967 03:04:35,831 --> 03:04:36,498 PRACTICE. 3968 03:04:36,565 --> 03:04:38,534 FOR CONTEXT I'M AT TEXAS 3969 03:04:38,600 --> 03:04:40,836 HOSPITAL I THINK THE LARGEST 3970 03:04:40,903 --> 03:04:41,437 CHILDREN'S HOSPITAL IN THE 3971 03:04:41,503 --> 03:04:42,704 UNITED STATES. 3972 03:04:42,771 --> 03:04:45,007 WE LIKELY HAVE THE LARGEST 3973 03:04:45,073 --> 03:04:50,646 NUMBER OF FTE ON OUR PALLIATIVE 3974 03:04:50,712 --> 03:04:52,247 CARE SERVICE AND CANNOT 3975 03:04:52,314 --> 03:04:54,817 BEGINNING TO MEET THE NEED OF 3976 03:04:54,883 --> 03:04:58,220 THE PATIENTS WE'RE SEEING. 3977 03:04:58,287 --> 03:05:02,090 WE HAVE AN INSTITUTION THAT 3978 03:05:02,157 --> 03:05:03,525 SUPPORTS A PALLIATIVE CARE 3979 03:05:03,592 --> 03:05:04,259 CONSULT SERVICE AND FORTUNATE TO 3980 03:05:04,326 --> 03:05:08,230 BE ABLE TO BE IN A POSITION 3981 03:05:08,297 --> 03:05:11,934 WHERE WE CAN UTILIZE SOME OF THE 3982 03:05:12,000 --> 03:05:14,970 TIME OF OUR STAFF AND CLINICIANS 3983 03:05:15,037 --> 03:05:22,444 AND FACULTY TO DO PRIMARY CARE 3984 03:05:22,511 --> 03:05:23,178 PALLIATIVE CARE EDUCATION AND 3985 03:05:23,245 --> 03:05:24,680 SUPPORT RESEARCH WORK WHICH 3986 03:05:24,746 --> 03:05:29,218 WE'LL TALK ABOUT IN A LITTLE 3987 03:05:29,284 --> 03:05:29,518 BIT. 3988 03:05:29,585 --> 03:05:31,353 THERE'S A LOT OF NEEDS FOR 3989 03:05:31,420 --> 03:05:32,754 PARTICIPANTS AND FOR OUR 3990 03:05:32,821 --> 03:05:35,390 COLLEAGUES IN TEACHING THEM 3991 03:05:35,457 --> 03:05:36,992 ABOUT PRIMARY PALLIATIVE CARE 3992 03:05:37,059 --> 03:05:38,961 AND HELPING THEM NAVIGATE THE 3993 03:05:39,027 --> 03:05:40,963 DISTRESS AND INTRICACIES OF 3994 03:05:41,029 --> 03:05:45,901 CHILDREN WITH SERIOUS ILLNESS. 3995 03:05:45,968 --> 03:05:48,670 AND THIS NEEDS TO HAPPEN IN THE 3996 03:05:48,737 --> 03:05:51,173 HOME AND COMMUNITY AND 3997 03:05:51,240 --> 03:05:52,741 COMMUNITY-BASED HOSPITALS AND 3998 03:05:52,808 --> 03:05:53,609 ACADEMIC MEDICAL CENTERS IN 3999 03:05:53,675 --> 03:06:00,749 WHICH MANY OF US WORK. 4000 03:06:00,816 --> 03:06:03,252 WHAT WE DO KNOW ABOUT WHERE 4001 03:06:03,318 --> 03:06:05,053 PALLIATIVE CARE EXISTS. 4002 03:06:05,120 --> 03:06:10,859 THERE'S BEEN A NUMBER OF STUDIES 4003 03:06:10,926 --> 03:06:16,198 THAT LOOKED FROM 2012 WITH A 4004 03:06:16,265 --> 03:06:19,001 TEAM LOOKING AT WHERE PALLIATIVE 4005 03:06:19,067 --> 03:06:20,969 CARE PROGRAMS EXIST AND WHERE 4006 03:06:21,036 --> 03:06:21,837 THEY'RE COMPRISED OF. 4007 03:06:21,904 --> 03:06:26,341 IN 2012 WE HAD 70% OF CHILDREN'S 4008 03:06:26,408 --> 03:06:26,842 HOMES REPORTED HAVING A 4009 03:06:26,909 --> 03:06:37,452 PEDIATRIC PALLIATIVE CARE OF THE 4010 03:06:41,757 --> 03:06:43,959 PROGRAMS 41% DIDN'T HAVE A 4011 03:06:44,026 --> 03:06:46,061 CHILDREN FTE AND VARIABILITY OF 4012 03:06:46,128 --> 03:06:47,262 WHAT THE PROGRAM CONSISTED OF 4013 03:06:47,329 --> 03:06:48,931 AND WHAT YOU HAD TO HAVE ON YOUR 4014 03:06:48,997 --> 03:06:52,467 TEAM TO BE CALLED A PEDIATRIC 4015 03:06:52,534 --> 03:06:55,337 PALLIATIVE CARE PROGRAM. 4016 03:06:55,404 --> 03:06:59,107 SOMETIMES IT WAS VERY LIMITED IN 4017 03:06:59,174 --> 03:07:02,110 A PART-TIME SOCIAL WORKER AND 4018 03:07:02,177 --> 03:07:03,178 SOMETIMES NURSE AND ADVANCED 4019 03:07:03,245 --> 03:07:05,581 PRACTICE PROVIDERS AND SOMETIMES 4020 03:07:05,647 --> 03:07:07,449 PHYSICIAN. 4021 03:07:07,516 --> 03:07:10,686 VERY LIMITED. 4022 03:07:10,752 --> 03:07:12,421 IN 2018 THE PALLIATIVE CARE 4023 03:07:12,487 --> 03:07:14,790 REGISTRY WAS TRYING TO DIG 4024 03:07:14,856 --> 03:07:21,029 DEEPER AND ING 40% WERE MEETING 4025 03:07:21,096 --> 03:07:22,197 WHAT WE CONSIDERED NATIONAL 4026 03:07:22,264 --> 03:07:24,733 GUIDELINES AND STANDARDS FOR 4027 03:07:24,800 --> 03:07:25,734 WHAT PEDIATRIC PALLIATIVE CARE 4028 03:07:25,801 --> 03:07:26,969 SHOULD BE FOR OUR PATIENTS AND 4029 03:07:27,035 --> 03:07:34,676 FAMILIES. 4030 03:07:34,743 --> 03:07:37,779 AND THE ANNUAL BENCHMARK RECORD 4031 03:07:37,846 --> 03:07:42,150 GAVE MORE INFORMATION AND 80% OF 4032 03:07:42,217 --> 03:07:43,218 PROGRAMS REPORT HAVING A 4033 03:07:43,285 --> 03:07:43,752 PEDIATRIC PALLIATIVE CARE 4034 03:07:43,819 --> 03:07:44,686 PROGRAM. 4035 03:07:44,753 --> 03:07:45,887 AGAIN, LIMITED DATA ON WHAT THE 4036 03:07:45,954 --> 03:07:48,557 PROGRAMS CONSISTENT OF AND WHAT 4037 03:07:48,624 --> 03:07:49,625 THE RESPONSIBILITIES ARE OF THE 4038 03:07:49,691 --> 03:07:56,331 PROGRAM AND WHAT THE FTE IS WHO 4039 03:07:56,398 --> 03:07:56,865 FUNDS THEM. 4040 03:07:56,932 --> 03:07:59,935 WE ALSO KNOW ABOUT DISPARITY IN 4041 03:08:00,002 --> 03:08:00,736 SERVICES. 4042 03:08:00,802 --> 03:08:04,673 THE MAJORITY OF PEDIATRIC 4043 03:08:04,740 --> 03:08:05,340 PALLIATIVE CARE CLINICIANS WORK 4044 03:08:05,407 --> 03:08:07,976 IN ACADEMIC CENTERS WITH THE 4045 03:08:08,043 --> 03:08:10,445 LIKELIHOOD OF SERVICES BEING 4046 03:08:10,512 --> 03:08:11,780 HIGHER WITH THE LARGER 4047 03:08:11,847 --> 03:08:12,114 HOSPITALS. 4048 03:08:12,180 --> 03:08:13,915 BED SIZE IS RELEVANT TO WHETHER 4049 03:08:13,982 --> 03:08:17,953 THERE'S A LIKELIHOOD YOUR 4050 03:08:18,020 --> 03:08:18,587 HOSPITAL HAS A PALLIATIVE CARE 4051 03:08:18,654 --> 03:08:26,461 PROGRAM FOR CHILDREN. 4052 03:08:26,528 --> 03:08:28,730 RURAL AREAS SUFFER GREATLY FROM 4053 03:08:28,797 --> 03:08:29,564 LIMITED SERVICES, HOSPITAL BASED 4054 03:08:29,631 --> 03:08:35,337 AND COMMUNITY-BASED SERVICES. 4055 03:08:35,404 --> 03:08:40,742 WE KNOW INFRASTRUCTURE FOR HOME 4056 03:08:40,809 --> 03:08:48,216 BASED PALLIATIVE CARE AND 4057 03:08:48,283 --> 03:08:54,222 LOOKING AT WHAT IT ENTAILS AND 4058 03:08:54,289 --> 03:08:56,958 ARE AAMBULATORY SERVICES ENOUGH 4059 03:08:57,025 --> 03:08:59,828 AND WE KNOW HOSPICE SERVICES ARE 4060 03:08:59,895 --> 03:09:05,434 NOT WIDELY AVAILABLE TO CHILDREN 4061 03:09:05,500 --> 03:09:06,635 EVEN IN MAJOR METROPOLITAN 4062 03:09:06,702 --> 03:09:07,202 AREAS. 4063 03:09:07,269 --> 03:09:10,305 WE KNOW THERE'S LIMITED RACIAL 4064 03:09:10,372 --> 03:09:15,677 AND ETHNIC DIVERSITY THAT ELF 4065 03:09:15,744 --> 03:09:18,613 TENDS TO FACULTY AND PHYSICIANS 4066 03:09:18,680 --> 03:09:19,581 AND COLLEAGUES IN THE HOME. 4067 03:09:19,648 --> 03:09:24,486 WE KNOW FROM CONVERSATIONS 4068 03:09:24,553 --> 03:09:26,722 YESTERDAY HOW IMPORTANT IT IS TO 4069 03:09:26,788 --> 03:09:32,728 PROVIDE CARE TO FAMILIES IN A 4070 03:09:32,794 --> 03:09:35,464 COUNTRY AND LANGUAGE APPROPRIATE 4071 03:09:35,530 --> 03:09:36,732 WAY. 4072 03:09:36,798 --> 03:09:41,203 A THIRD OF THE PATIENTS HAVE 4073 03:09:41,269 --> 03:09:42,838 SPANISH AS THEIR PRIMARY 4074 03:09:42,904 --> 03:09:45,741 LANGUAGE AND WE STRUGGLE IN 4075 03:09:45,807 --> 03:09:48,810 THINKING HOW TO PROVIDE 4076 03:09:48,877 --> 03:09:54,783 EQUITABLE CARE. 4077 03:09:54,850 --> 03:10:02,624 HOW ARE WE EXPANDING OUR 4078 03:10:02,691 --> 03:10:02,958 WORKFORCE? 4079 03:10:03,024 --> 03:10:05,761 THERE'S NO GREAT WAY TO GET THE 4080 03:10:05,827 --> 03:10:12,200 NUMBER WE MANUALLY CALCULATED IT 4081 03:10:12,267 --> 03:10:13,468 AFTER THE DATA AND THERE'S 80 4082 03:10:13,535 --> 03:10:15,971 PROGRAMS FROM THE ACCREDITED 4083 03:10:16,037 --> 03:10:17,139 TRAINING PROGRAMS THAT WILL 4084 03:10:17,205 --> 03:10:21,109 TRAIN PEDIATRICIANS IN HOSPICE 4085 03:10:21,176 --> 03:10:23,078 AND PALLIATIVE MEDICINE. 4086 03:10:23,145 --> 03:10:26,047 SOME ARE PEDIATRIC ONLY AND SOME 4087 03:10:26,114 --> 03:10:36,558 ARE IN A -- ADULT CENTERS. 4088 03:10:36,792 --> 03:10:40,195 MANY PEOPLE WHO ENTER PALLIATIVE 4089 03:10:40,262 --> 03:10:43,965 ENTER IN A DUAL-TRAINING WAY. 4090 03:10:44,032 --> 03:10:46,134 THEY EITHER COMPLETED A 4091 03:10:46,201 --> 03:10:47,903 SUBSPECIALTY PROGRAM PRIOR TO 4092 03:10:47,969 --> 03:10:50,405 PALLIATIVE OR INTEND TO COMPLETE 4093 03:10:50,472 --> 03:10:55,310 A SECOND FELLOWSHIP AFTER THEY 4094 03:10:55,377 --> 03:10:55,944 GRADUATE FROM THESE TRAINING 4095 03:10:56,011 --> 03:10:59,347 PROGRAMS AND THEY'VE LIKELY TO 4096 03:10:59,414 --> 03:11:03,218 SPEND ONLY A PORTION OF THEIR 4097 03:11:03,285 --> 03:11:05,420 TIME DEDICATED TO PALLIATIVE 4098 03:11:05,487 --> 03:11:10,292 CARE AND THE OTHER IS IN ICU AND 4099 03:11:10,358 --> 03:11:12,894 NEONATOLOGY, HOSPITAL MEDICINE 4100 03:11:12,961 --> 03:11:15,831 COMPLEX CARE. 4101 03:11:15,897 --> 03:11:17,332 IT DOESN'T COME CLOSE TO MEETING 4102 03:11:17,399 --> 03:11:19,234 THE CLINICAL WORKFORCE NEEDS WE 4103 03:11:19,301 --> 03:11:20,335 HAVE AND GROWING CLINICAL 4104 03:11:20,402 --> 03:11:22,704 WORKFORCE NEEDS WE'LL HAVE. 4105 03:11:22,771 --> 03:11:24,706 FUNDING FOR THE PROGRAMS IS 4106 03:11:24,773 --> 03:11:24,973 VARIABLE. 4107 03:11:25,040 --> 03:11:30,579 THERE'S EITHER INSTITUTIONALLY 4108 03:11:30,645 --> 03:11:35,750 FUNDED, SOMETIMES BUILT UP AND 4109 03:11:35,817 --> 03:11:40,288 THERE'S NO FUNDS FOR THE 4110 03:11:40,355 --> 03:11:43,158 PROGRAM AND MAY HAVE THE FACULTY 4111 03:11:43,225 --> 03:11:44,359 AND PATIENTS BUT MANY JUST DON'T 4112 03:11:44,426 --> 03:11:47,229 HAVE THE FUNDING. 4113 03:11:47,295 --> 03:11:53,401 LASTLY, THERE'S GOOD PILOT WORK 4114 03:11:53,468 --> 03:11:54,102 BEING DONE ABOUT TRAINING MID 4115 03:11:54,169 --> 03:11:58,406 CAREER PHYSICIANS IN A WAY WHERE 4116 03:11:58,473 --> 03:11:59,574 THEY COMPLETE COMPETENCY 4117 03:11:59,641 --> 03:12:03,645 REQUIREMENTS BUT DON'T HAVE TO 4118 03:12:03,712 --> 03:12:06,214 QUIT PRACTICE IN ORDER TO 4119 03:12:06,281 --> 03:12:07,382 REGISTER FOR FELLOW. 4120 03:12:07,449 --> 03:12:07,582 SHIP. 4121 03:12:07,649 --> 03:12:09,017 THEY CAN COMPLETE THE TRAINING 4122 03:12:09,084 --> 03:12:09,885 ALONGSIDE THEIR PRIMARY PRACTICE 4123 03:12:09,951 --> 03:12:15,790 OVER THE COURSE OF A COUPLE 4124 03:12:15,857 --> 03:12:20,495 YEARS DEPENDING ON HOW LONG IT 4125 03:12:20,562 --> 03:12:23,498 TAKES AND AS OF NOW, FOR 4126 03:12:23,565 --> 03:12:24,733 PEDIATRICIANS THERE ARE NO 4127 03:12:24,799 --> 03:12:35,277 ALTERNATIVE TRAINING MODELS. 4128 03:12:42,951 --> 03:12:44,719 THIS IS MY RECOMMENDATION OF 4129 03:12:44,786 --> 03:12:46,988 ACCREDITED FELLOWSHIPS IN 2008. 4130 03:12:47,055 --> 03:12:50,959 THERE WERE FOUR AT THE TIME. 4131 03:12:51,026 --> 03:12:53,361 WE'RE UP TO ABOUT 30 THAT TRAIN 4132 03:12:53,428 --> 03:13:02,971 ABOUT 40 FELLOWS PER YEAR. 4133 03:13:03,038 --> 03:13:08,276 THE PERSON BOARD OF MEDICAL SUB 4134 03:13:08,343 --> 03:13:11,379 SPECIALTIES SAY WE HAVE ABOUT 4135 03:13:11,446 --> 03:13:14,649 410 PHYSICIANS WHO HAVE TAKEN 4136 03:13:14,716 --> 03:13:16,985 THE BOARD FOR PALLIATIVE CARE 4137 03:13:17,052 --> 03:13:19,120 FOR PEDIATRICIANS AND THIS 4138 03:13:19,187 --> 03:13:20,789 DOESN'T CONSIDER WHO IS RETIRED 4139 03:13:20,855 --> 03:13:22,557 OR PRACTICES PALLIATIVE CARE AND 4140 03:13:22,624 --> 03:13:24,893 A NUMBER WERE GRANDFATHERED IN 4141 03:13:24,960 --> 03:13:32,734 BEFORE THE BOARD SPECIALTY BEGYM 4142 03:13:32,801 --> 03:13:37,105 CERTIFIED WE DON'T KNOW HOW MANY 4143 03:13:37,172 --> 03:13:43,511 OF THE 410 ARE PRACTICING. 4144 03:13:43,578 --> 03:13:50,685 THIS IS A COMPARISON OF THE 4145 03:13:50,752 --> 03:13:51,486 SUBSPECIALTY FOR WHICH WE 4146 03:13:51,553 --> 03:13:55,623 CONSULT WHERE THERE'S THOUSANDS 4147 03:13:55,690 --> 03:13:58,660 IN CARDIOVASCULAR AND 4148 03:13:58,727 --> 03:14:03,598 HEMO-NATOLOGY AND A STARK 4149 03:14:03,665 --> 03:14:03,898 DIFFERENCE. 4150 03:14:03,965 --> 03:14:05,133 THINKING ABOUT THE PIPELINE AND 4151 03:14:05,200 --> 03:14:06,301 WHY IT'S IMPORTANT. 4152 03:14:06,368 --> 03:14:09,037 WHY AM I TALKING ABOUT CLINICAL 4153 03:14:09,104 --> 03:14:13,441 WORKFORCE WHEN WHAT WE'RE 4154 03:14:13,508 --> 03:14:14,976 FOCUSSING ON FOR THIS GROUP IS 4155 03:14:15,043 --> 03:14:16,644 HOW DO WE GROW A RESEARCH 4156 03:14:16,711 --> 03:14:19,147 WORKFORCE AND EXPAND THE NUMBER 4157 03:14:19,214 --> 03:14:22,083 OF PEOPLE WHO ARE INTERESTED, 4158 03:14:22,150 --> 03:14:24,285 DEDICATED AND ABLE TO BE 4159 03:14:24,352 --> 03:14:26,388 PHYSICIAN AND CLINICIAN 4160 03:14:26,454 --> 03:14:27,856 INVESTIGATORS FOR PALLIATIVE 4161 03:14:27,922 --> 03:14:28,723 CARE? 4162 03:14:28,790 --> 03:14:32,060 MOST PEOPLE ON THE CALL, MOST 4163 03:14:32,127 --> 03:14:35,663 PEOPLE IN FELLOWSHIP PROGRAMS 4164 03:14:35,730 --> 03:14:37,132 REQUIRE THE YEARS AND THERE'S A 4165 03:14:37,198 --> 03:14:38,933 PROPORTION OF TIME DEDICATED TO 4166 03:14:39,000 --> 03:14:45,373 RESEARCH AND SCHOLARSHIP AND 4167 03:14:45,440 --> 03:14:53,048 MANY INVESTIGATORS GO THROUGH 4168 03:14:53,114 --> 03:14:54,582 THE PROGRAMS AND DEVELOP 4169 03:14:54,649 --> 03:14:59,621 RESEARCH SKILLS AND IT'S A 4170 03:14:59,687 --> 03:15:01,990 TRAINING PROGRAM IN GENERAL THEY 4171 03:15:02,057 --> 03:15:03,892 TEND TO ATTRACT THOSE MOST 4172 03:15:03,958 --> 03:15:05,427 FOCUSSED ON CLINICAL MEDICINE. 4173 03:15:05,493 --> 03:15:08,963 THE NUMBER OF APPLICANTS EVERY 4174 03:15:09,030 --> 03:15:11,533 YEAR WHOSE FOCUS IS IN CLINICAL 4175 03:15:11,599 --> 03:15:16,037 INVESTIGATION AND TRANSLATIONAL 4176 03:15:16,104 --> 03:15:16,838 INVESTIGATION AND IMPLEMENTATION 4177 03:15:16,905 --> 03:15:17,839 SCIENCE IS LOW. 4178 03:15:17,906 --> 03:15:23,111 IT'S A RARE CANDIDATE FOCUSSED 4179 03:15:23,178 --> 03:15:25,346 ON BUILDING A CAREER IN CLINICAL 4180 03:15:25,413 --> 03:15:25,680 RESEARCH. 4181 03:15:25,747 --> 03:15:30,985 THERE'S RARELY FUNDING. 4182 03:15:31,052 --> 03:15:32,720 EVEN IF WE HAD ONE TO EXTEND TO 4183 03:15:32,787 --> 03:15:38,426 DO ACADEMIC RESEARCH WORK PAST 4184 03:15:38,493 --> 03:15:41,062 THE FIRST YEAR THIS MEANS THE 4185 03:15:41,129 --> 03:15:42,764 TRADITIONAL ENTRY WAY IS 4186 03:15:42,831 --> 03:15:43,598 DIFFICULT TO RECRUIT FOR, 4187 03:15:43,665 --> 03:15:47,368 DIFFICULT TO STAINS. 4188 03:15:47,435 --> 03:15:48,536 -- SUSTAIN. 4189 03:15:48,603 --> 03:15:55,710 WE HAVE THIS COMPETING NEED FOR 4190 03:15:55,777 --> 03:15:56,744 PALLIATIVE CARE CLINICIANS. 4191 03:15:56,811 --> 03:15:57,679 WE NEED THEM IN THE COMMUNITY 4192 03:15:57,745 --> 03:16:04,052 AND IN HOSPICE AND ROLES IN 4193 03:16:04,119 --> 03:16:04,719 HOSPITAL-BASED PROGRAMS AND NEED 4194 03:16:04,786 --> 03:16:06,387 THEM TO THINK ABOUT BECOMING THE 4195 03:16:06,454 --> 03:16:16,898 NEXT SET OF INVESTIGATORS. 4196 03:16:26,007 --> 03:16:26,608 THERE ARE MANY PEDIATRIC SUB 4197 03:16:26,674 --> 03:16:28,676 SPECIALTY PROGRAMS THAT DO NOT 4198 03:16:28,743 --> 03:16:29,577 FILL THEIR FELLOWSHIP SPOTS 4199 03:16:29,644 --> 03:16:31,379 EVERY YEAR. 4200 03:16:31,446 --> 03:16:36,518 THE CLINICAL NEEDS REMAIN HIGH. 4201 03:16:36,584 --> 03:16:39,587 THERE ARE MORE AND MORE PRESSURE 4202 03:16:39,654 --> 03:16:40,722 FOR PHYSICIAN TO SEE MORE 4203 03:16:40,788 --> 03:16:43,057 CLINICS AND THE UNFUNDED 4204 03:16:43,124 --> 03:16:44,459 RESEARCH TIME IS SHRINKING. 4205 03:16:44,526 --> 03:16:46,094 IT'S HARDER AND HARDER TO 4206 03:16:46,161 --> 03:16:48,863 ADVOCATE FOR OUR FACULTY TO HAVE 4207 03:16:48,930 --> 03:16:56,738 UNFUNDED TIME. 4208 03:16:56,804 --> 03:17:00,875 WE HAVE PARTICIPATED IN THE 4209 03:17:00,942 --> 03:17:01,809 MAJORITY OF PALLIATIVE CARE 4210 03:17:01,876 --> 03:17:03,111 CENTER AND COST SHARED EVERY 4211 03:17:03,178 --> 03:17:03,645 ONE. 4212 03:17:03,711 --> 03:17:04,445 THIS IS NOT SOMETHING MOST 4213 03:17:04,512 --> 03:17:09,784 INSTITUTIONS CAN DO. 4214 03:17:09,851 --> 03:17:11,085 WORKFORCE BURNOUT IS REAL AND 4215 03:17:11,152 --> 03:17:13,922 SOMETHING WE NEED TO STUDY AND 4216 03:17:13,988 --> 03:17:14,689 MITIGATE. 4217 03:17:14,756 --> 03:17:16,724 WE NEED TO THINK OF CAREER 4218 03:17:16,791 --> 03:17:18,893 TRAINING OPPORTUNITIES FOR MID 4219 03:17:18,960 --> 03:17:22,630 CAREER PHYSICIANS. 4220 03:17:22,697 --> 03:17:24,732 LASTLY, PEDIATRIC CARE PROGRAMS 4221 03:17:24,799 --> 03:17:26,734 UTILIZE DOLLARS TO FUND A 4222 03:17:26,801 --> 03:17:28,436 SUBSTANTIAL PORTION OF THE WORK 4223 03:17:28,503 --> 03:17:32,974 WE DO AND MAKES FUND RAISING FOR 4224 03:17:33,041 --> 03:17:36,744 RESEARCH WITH THESE SAME 4225 03:17:36,811 --> 03:17:39,881 INSTITUTIONS DIFFICULT. 4226 03:17:39,948 --> 03:17:42,217 AND CONSIDERATIONS PHOR THE 4227 03:17:42,283 --> 03:17:42,550 FUTURE. 4228 03:17:42,617 --> 03:17:45,286 WE NEED SOME WORK TO DEFINE 4229 03:17:45,353 --> 03:17:47,855 PALLIATIVE CARE NEEDS AND THE 4230 03:17:47,922 --> 03:17:50,058 WORKFORCE WE NEED TO PROVIDE 4231 03:17:50,124 --> 03:17:50,959 OPTIMAL CARE. 4232 03:17:51,025 --> 03:17:56,965 WE CANNOT RELY ON PROGRAMS AND 4233 03:17:57,031 --> 03:17:58,499 SERVICES TO DO THE WORK THAT 4234 03:17:58,566 --> 03:18:01,402 NEEDS TO GET DONE AND NEED TO 4235 03:18:01,469 --> 03:18:02,337 THINK WHERE THE TRAINING NEEDS 4236 03:18:02,403 --> 03:18:04,505 TO HAPPEN AND WHO NEEDS TO DO IT 4237 03:18:04,572 --> 03:18:06,507 AND HOW WE MIGHT NEED TO 4238 03:18:06,574 --> 03:18:09,344 REUTILIZE THE RESOURCES WE HAVE. 4239 03:18:09,410 --> 03:18:15,883 WE NEED TO THINK ABOUT PATHWAYS 4240 03:18:15,950 --> 03:18:20,722 AND HOW TO ADVOCATE FOR 4241 03:18:20,788 --> 03:18:21,923 INVESTIGATOR-RESEARCH FUNDING 4242 03:18:21,990 --> 03:18:23,992 FOR OUR JUNIOR INVESTIGATORS WHO 4243 03:18:24,058 --> 03:18:24,759 OFTEN DON'T HAVE TIME TO 4244 03:18:24,826 --> 03:18:29,897 CONTINUE THEIR RESEARCH WORK. 4245 03:18:29,964 --> 03:18:32,400 WE NEED RECOGNITION FROM FUNDERS 4246 03:18:32,467 --> 03:18:36,404 AND OUR HOSPITAL-BASED ACADEMIC 4247 03:18:36,471 --> 03:18:38,973 TEAMS THE FIELD IS YOUNG AND 4248 03:18:39,040 --> 03:18:41,276 EMERGING AND NEEDS CREATIVITY 4249 03:18:41,342 --> 03:18:43,344 AND HOW TO THINK ABOUT FUNDING 4250 03:18:43,411 --> 03:18:44,646 EVALUATIONS AND GO ABOUT GRANT 4251 03:18:44,712 --> 03:18:52,287 REVIEW AND PROMOTION COMMITTEES. 4252 03:18:52,353 --> 03:18:54,455 WITH PRIOR NIH FUNDING THE 4253 03:18:54,522 --> 03:18:59,294 NUMBER WHO ARE FULL PROFESSORS 4254 03:18:59,360 --> 03:19:00,728 THE NUMBER IS SMALL AND MANY 4255 03:19:00,795 --> 03:19:02,930 PLACES EXCLUDE YOU FROM REV 4256 03:19:02,997 --> 03:19:05,600 REVIEWING A GRANT FROM YOU EVER 4257 03:19:05,667 --> 03:19:09,771 COLLABORATED AND MANY KNOW WE 4258 03:19:09,837 --> 03:19:12,740 COLLABORATED WITH SO MANY THE 4259 03:19:12,807 --> 03:19:15,176 LIST BECOMES SUBSTANTIAL. 4260 03:19:15,243 --> 03:19:17,445 THANK YOU SO MUCH AGAIN TO 4261 03:19:17,512 --> 03:19:20,048 DR. OCTOBER FOR ORGANIZING THIS 4262 03:19:20,114 --> 03:19:22,817 AND NICHD FOR SPONSORING IT AND 4263 03:19:22,884 --> 03:19:25,353 FOR THE ORGANIZATIONS THAT WE'RE 4264 03:19:25,420 --> 03:19:27,522 ALL PART OF AND DOING THE WORK 4265 03:19:27,588 --> 03:19:28,556 IN WORKFORCE DEVELOPMENT. 4266 03:19:28,623 --> 03:19:31,993 ALL THAT DO THIS EVERY DAY AND 4267 03:19:32,060 --> 03:19:33,027 CERTAINLY THE PATIENTS AND 4268 03:19:33,094 --> 03:19:36,864 FAMILIES THAT INSPIRE US ALL. 4269 03:19:36,931 --> 03:19:44,739 THANK YOU. 4270 03:19:44,806 --> 03:19:49,010 >> THANK YOU, TAMMY. 4271 03:19:49,077 --> 03:19:50,144 CAN YOU HEAR ME? 4272 03:19:50,211 --> 03:19:50,611 >> YES. 4273 03:19:50,678 --> 03:19:52,146 >> I'LL TAKE QUESTIONS WHEN YOU 4274 03:19:52,213 --> 03:19:53,114 JOIN US IN THE PANEL. 4275 03:19:53,181 --> 03:19:58,853 I'LL ASK YOU TO STAY WITH YOUR 4276 03:19:58,920 --> 03:20:04,158 CAMERA ON AND INVITE THE OTHERS 4277 03:20:04,225 --> 03:20:10,431 TO JOIN US FOR THE LAST SESSION. 4278 03:20:10,498 --> 03:20:13,801 THANK YOU ALL FOR YOUR STAYING 4279 03:20:13,868 --> 03:20:14,001 POWER. 4280 03:20:14,068 --> 03:20:18,339 PLEASE COME ON AND TURN YOUR 4281 03:20:18,406 --> 03:20:18,773 CAMERAS ON. 4282 03:20:18,840 --> 03:20:22,310 WE'LL TRY TO KEEP IT SHORT IN 4283 03:20:22,377 --> 03:20:22,677 ANSWERS. 4284 03:20:22,744 --> 03:20:24,579 WE'RE ASKING YOU THE AUDIENCE TO 4285 03:20:24,645 --> 03:20:31,552 HELP GUIDE US IN ANSWERING THESE 4286 03:20:31,619 --> 03:20:32,720 QUESTIONS. 4287 03:20:32,787 --> 03:20:40,228 SO WE'RE GOING TO USE WORD 4288 03:20:40,294 --> 03:20:41,229 CLOUD. 4289 03:20:41,295 --> 03:20:49,337 SCAN THE QR CODE THERE'S GOING 4290 03:20:49,404 --> 03:20:50,338 TO BE THREE QUESTIONS. 4291 03:20:50,405 --> 03:20:53,541 WE'LL ANSWER ONE AT A TIME AND 4292 03:20:53,608 --> 03:20:54,842 DISCUSS IT WITH OUR PANELISTS AN 4293 03:20:54,909 --> 03:21:02,550 PUT THE NEXT QUESTION ON. 4294 03:21:02,617 --> 03:21:04,719 PANELISTS BEHIND THE SCENES ARE 4295 03:21:04,786 --> 03:21:06,788 FREE TO ANSWER AS WELL. 4296 03:21:06,854 --> 03:21:09,023 USING ONE WORD WHAT POPULATION 4297 03:21:09,090 --> 03:21:11,392 HAS THE MOST PRESSING NEED FOR 4298 03:21:11,459 --> 03:21:16,431 RESEARCH INVESTIGATION? 4299 03:21:16,497 --> 03:21:18,666 THIS COULD BE INFANTS OR 4300 03:21:18,733 --> 03:21:18,933 FAMILIES. 4301 03:21:19,000 --> 03:21:25,840 YOU HEARD FROM FOLKS TODAY. 4302 03:21:25,907 --> 03:21:28,242 I'LL LEAVE IT UP FOR A MINUTE OR 4303 03:21:28,309 --> 03:21:38,853 UNTIL WE STOP GETTING RESPONSES. 4304 03:22:11,853 --> 03:22:13,054 >> LOOKS LIKE WE'RE SLOWING DOWN 4305 03:22:13,120 --> 03:22:23,231 A BIT. 4306 03:22:26,200 --> 03:22:29,904 CHRIS OR RENE OR TAMMY, PLEASE 4307 03:22:29,971 --> 03:22:31,372 GIVE US YOUR THOUGHTS ABOUT 4308 03:22:31,439 --> 03:22:31,706 THIS. 4309 03:22:31,772 --> 03:22:34,976 LOOKS LIKE FAMILY AND CAREGIVERS 4310 03:22:35,042 --> 03:22:37,578 AND PERINATAL MARGINALIZED ARE 4311 03:22:37,645 --> 03:22:39,680 SOME OF THE HIGHEST THINGS OUR 4312 03:22:39,747 --> 03:22:41,883 AUDIENCE HAVE TOLD US ARE 4313 03:22:41,949 --> 03:22:42,149 IMPORTANT. 4314 03:22:42,216 --> 03:22:46,988 I'D LOVE YOU CRYSTAL OR RENE TO 4315 03:22:47,054 --> 03:22:48,456 HELP SHARE YOUR THOUGHTS. 4316 03:22:48,523 --> 03:22:51,626 >> I DISCLOSED BY BIAS. 4317 03:22:51,692 --> 03:22:54,228 I'M A NEONATOLOGIST AND SPEND 4318 03:22:54,295 --> 03:22:55,530 TIME IN THE SPACE BUT IT'S 4319 03:22:55,596 --> 03:23:01,102 ALWAYS CURIOUS TO ME AND I CAME 4320 03:23:01,168 --> 03:23:05,973 TO THE FIELD IN 2006 AND CURIOUS 4321 03:23:06,040 --> 03:23:12,513 TO ME HOW LITTLE RESEARCH WAS IN 4322 03:23:12,580 --> 03:23:14,015 INFANTS WHEN THEY WERE SO LIKELY 4323 03:23:14,081 --> 03:23:20,721 TO DIE IN THE FIRST FEW DAYS OF 4324 03:23:20,788 --> 03:23:20,955 BIRTH. 4325 03:23:21,022 --> 03:23:22,189 THERE'S OPPORTUNITIES IN THE 4326 03:23:22,256 --> 03:23:26,027 SPACE AND WE HAVE FETAL 4327 03:23:26,093 --> 03:23:26,360 INTERVENTION. 4328 03:23:26,427 --> 03:23:28,362 THERE'S MULTIPLE OPPORTUNITIES 4329 03:23:28,429 --> 03:23:29,430 FOR COLLABORATION AND DRAWING 4330 03:23:29,497 --> 03:23:31,032 OFF RECEIVES THAT ARE IN OTHER 4331 03:23:31,098 --> 03:23:37,038 SPACES BUT WE HAVEN'T BEEN DOING 4332 03:23:37,104 --> 03:23:39,941 THAT IN A CONCENTRATED WAY. 4333 03:23:40,007 --> 03:23:47,348 I SUPPORT INCREASED FOCUS ON THE 4334 03:23:47,415 --> 03:23:49,383 PERINATAL POPULATION AND GOES 4335 03:23:49,450 --> 03:23:50,952 OUTSAYING FOR ME IT'S ABOUT THE 4336 03:23:51,018 --> 03:24:01,362 PATIENTS AND FAMILY. 4337 03:24:11,272 --> 03:24:12,640 >> IN THE NON-TRADITIONAL 4338 03:24:12,707 --> 03:24:14,609 POPULATIONS AND IT WAS ALL ABOUT 4339 03:24:14,675 --> 03:24:20,381 CANCER AND PATIENTS WITH ICU OR 4340 03:24:20,448 --> 03:24:21,148 CONGENITAL HEART DISEASE, THERE 4341 03:24:21,215 --> 03:24:22,416 ARE POPULATIONS THAT HAVE BEEN 4342 03:24:22,483 --> 03:24:24,185 UNDER SERVED WHEN IT COMES TO 4343 03:24:24,251 --> 03:24:30,124 THINKING ABOUT INVESTIGATION. 4344 03:24:30,191 --> 03:24:38,032 I'LL ALSO SAY WE CANNOT -- MY 4345 03:24:38,099 --> 03:24:41,202 ROLE IN INVESTIGATIVE PALLIATIVE 4346 03:24:41,268 --> 03:24:43,170 CARE IS FOR THE QUESTIONS TO BE 4347 03:24:43,237 --> 03:24:45,606 ASKED AND ANSWERED AND THE 4348 03:24:45,673 --> 03:24:46,674 PROBLEM IS WE DON'T HAVE THE 4349 03:24:46,741 --> 03:24:51,145 WORKFORCE IN PERINATAL. 4350 03:24:51,212 --> 03:24:54,148 IF WE THINK WE'RE SHORT IN 4351 03:24:54,215 --> 03:24:56,751 PEDIATRIC PALLIATIVE, PERINATAL 4352 03:24:56,817 --> 03:25:01,489 THERE'S A SMALL NUMBER OF PEOPLE 4353 03:25:01,555 --> 03:25:03,157 TRAINED WHERE PEOPLE CAN HAVE 4354 03:25:03,224 --> 03:25:05,593 ACCESS TO PATIENTS TO BE ABLE TO 4355 03:25:05,660 --> 03:25:16,037 ANSWER THE QUESTIONS. 4356 03:25:17,204 --> 03:25:22,443 >> I THINK THE ANSWERS MAP OUT 4357 03:25:22,510 --> 03:25:27,014 AS A PROVIDER OF PALLIATIVE CARE 4358 03:25:27,081 --> 03:25:28,149 IS SUFFERING PATIENTS. 4359 03:25:28,215 --> 03:25:30,584 I'M EMBARRASSED AS A CLINICIAN 4360 03:25:30,651 --> 03:25:35,256 TO 20 YEARS INTO DOING THIS AND 4361 03:25:35,322 --> 03:25:36,757 WALKING INTO ROOMS WHERE A 4362 03:25:36,824 --> 03:25:39,627 PATIENT IS SUFFERING FROM 4363 03:25:39,694 --> 03:25:42,129 PHYSICAL DISTRESS AND WE ARE 4364 03:25:42,196 --> 03:25:44,465 TAKING EDUCATED GUESSES ABOUT 4365 03:25:44,532 --> 03:25:48,169 HOW TO MITIGATE THOSE SYMPTOMS. 4366 03:25:48,235 --> 03:25:54,442 I THINK THAT IS TO ME TRANSCENDS 4367 03:25:54,508 --> 03:25:57,611 PARTICULAR GROUPS TO A BROADER 4368 03:25:57,678 --> 03:26:02,516 PROBLEM THAT ARE SYMPTOM 4369 03:26:02,583 --> 03:26:04,719 STRATEGIES WHERE TOO MANY 4370 03:26:04,785 --> 03:26:09,490 CHILDREN ARE INADEQUATE AND HAS 4371 03:26:09,557 --> 03:26:10,491 REPERCUSSIONS. 4372 03:26:10,558 --> 03:26:12,760 AND I'VE TALKED TO PARENTS AND 4373 03:26:12,827 --> 03:26:15,930 THEY SAID IF YOU CAN MAKE MY 4374 03:26:15,996 --> 03:26:20,468 CHILD COMFORTABLE YOU'LL HAVE 4375 03:26:20,534 --> 03:26:24,739 DONE ME AND MY FAMILY A HUGE 4376 03:26:24,805 --> 03:26:31,245 SERVICE. 4377 03:26:31,312 --> 03:26:34,148 >> I'LL UNDER SCORE THE WORD 4378 03:26:34,215 --> 03:26:36,150 MARGINALIZED AND MAKING SURE THE 4379 03:26:36,217 --> 03:26:38,953 LIVED EXPERIENCE GETS 4380 03:26:39,019 --> 03:26:41,222 HIGHLIGHTED AND EXPANDING BEYOND 4381 03:26:41,288 --> 03:26:43,390 THE CHILD AND FAMILY SIBLINGS 4382 03:26:43,457 --> 03:26:45,126 AND CAREGIVERS, THAT'S ALL IN 4383 03:26:45,192 --> 03:26:46,527 OUR RESEARCH WHEELHOUSE AND I'M 4384 03:26:46,594 --> 03:26:49,797 EXCITED TO SEE THAT UP THERE AND 4385 03:26:49,864 --> 03:26:51,132 THINKING WHO WE HAVEN'T HEARD 4386 03:26:51,198 --> 03:26:52,733 FROM YET AND APPLYING OUR SKILLS 4387 03:26:52,800 --> 03:26:56,704 THERE. 4388 03:26:56,771 --> 03:27:02,743 >> THANK YOU. 4389 03:27:02,810 --> 03:27:08,415 SO USING THE SAME APP WE ASKED 4390 03:27:08,482 --> 03:27:09,984 ABOUT THE WHO. 4391 03:27:10,050 --> 03:27:11,318 WHAT SETTING IS CURRENTLY 4392 03:27:11,385 --> 03:27:14,188 MISSING OR NEEDS MORE ATTENTION? 4393 03:27:14,255 --> 03:27:18,492 I PUT EXAMPLES THERE HOSPICE, 4394 03:27:18,559 --> 03:27:19,560 UCU, COMMUNITY, TELL US WHAT 4395 03:27:19,627 --> 03:27:29,870 WE'RE MISSING. 4396 03:27:44,852 --> 03:27:55,196 HOSPICE IS IN OUR FACE. 4397 03:28:00,534 --> 03:28:04,338 WE'RE SEEING HOME AND HOSPICE 4398 03:28:04,405 --> 03:28:05,239 AND COMMUNITY AND CURIOUS WHAT 4399 03:28:05,306 --> 03:28:07,842 YOU THINK ABOUT THAT AND THE 4400 03:28:07,908 --> 03:28:08,876 BARRIERS POTENTIALLY TO 4401 03:28:08,943 --> 03:28:09,476 CONDUCTING RESEARCH IN THESE 4402 03:28:09,543 --> 03:28:17,051 SETTINGS. 4403 03:28:17,117 --> 03:28:18,652 >> I'LL THRILLED TO SEE THE 4404 03:28:18,719 --> 03:28:20,254 VARIETY OF ALL PLACES WHERE OUR 4405 03:28:20,321 --> 03:28:22,122 RESEARCH NEEDS TO TOUCH AND WANT 4406 03:28:22,189 --> 03:28:23,757 TO MAYBE TAKE A MOMENT TO 4407 03:28:23,824 --> 03:28:27,661 HIGHLIGHT THE WORK OF JACKIE 4408 03:28:27,728 --> 03:28:30,464 BOYDEN DOING WORK IN WHAT 4409 03:28:30,531 --> 03:28:32,967 FAMILIES NEED IN THE HOME AND 4410 03:28:33,033 --> 03:28:34,501 HOSPICE COMMUNITY SETTING. 4411 03:28:34,568 --> 03:28:36,470 THAT'S SUPER IMPORTANT AS IS ICU 4412 03:28:36,537 --> 03:28:41,175 AND ACROSS THE CARE SPECTRUM. 4413 03:28:41,242 --> 03:28:51,285 >> THANK YOU. 4414 03:28:51,352 --> 03:28:52,519 THE CHALLENGES ARE THE ONES WE 4415 03:28:52,586 --> 03:28:54,688 FEEL AND THERE WAS CONVERSATION 4416 03:28:54,755 --> 03:29:00,027 IN THE BEREAVEMENT AND FAMILY 4417 03:29:00,094 --> 03:29:01,128 AND SIBLING DISCUSSIONS EARLIER 4418 03:29:01,195 --> 03:29:02,963 ABOUT FAMILIES JUST BEING 4419 03:29:03,030 --> 03:29:07,334 STRETCHED AND HOW TO DO WE 4420 03:29:07,401 --> 03:29:10,404 SUPPORT THEM AND COMPENSATE 4421 03:29:10,471 --> 03:29:12,573 FAMILIES ACTIVELY PARTICIPATING 4422 03:29:12,640 --> 03:29:16,944 IN RESEARCH AND ENGAGE FAMILIES 4423 03:29:17,011 --> 03:29:20,748 WHO ARE UNABLE TO FIND FIVE 4424 03:29:20,814 --> 03:29:24,351 MINUTES TO PARTICIPATE IN A 4425 03:29:24,418 --> 03:29:30,991 QUALITATIVE STUDY OR IB A 4426 03:29:31,058 --> 03:29:31,392 RESOURCE SURVEY. 4427 03:29:31,458 --> 03:29:33,193 HOW DO WE THINK OF THOSE UNDER 4428 03:29:33,260 --> 03:29:34,495 REPRESENTED AND WE ARE TRYING TO 4429 03:29:34,561 --> 03:29:36,263 SEND OUT SURVEYS BY E-MAIL BUT 4430 03:29:36,330 --> 03:29:38,265 WHAT IF YOU DON'T HAVE AN E-MAIL 4431 03:29:38,332 --> 03:29:45,673 OR PHONE OR ARE NOT ABLE TO DO 4432 03:29:45,739 --> 03:29:47,274 THE SURVEY IN YOUR PREFERRED 4433 03:29:47,341 --> 03:29:47,541 LANGUAGE. 4434 03:29:47,608 --> 03:29:48,776 THE CHALLENGES ARE SIGNIFICANT 4435 03:29:48,842 --> 03:29:50,577 BUT I AGEE WE NEED TO THINK 4436 03:29:50,644 --> 03:29:52,413 ABOUT -- WE DON'T KNOW WHAT 4437 03:29:52,479 --> 03:29:54,882 WE'RE DOING IN THE HOME IN HOSS 4438 03:29:54,949 --> 03:29:56,884 PIT AND COMMUNITY AS CLINICIANS. 4439 03:29:56,951 --> 03:30:01,522 I DON'T THINK WE KNOW WHAT 4440 03:30:01,588 --> 03:30:02,890 FAMILIES NEED AND WHAT'S GOING 4441 03:30:02,957 --> 03:30:04,758 TO BE THE MOST IMPORTANT AND 4442 03:30:04,825 --> 03:30:10,497 VALUABLE TO THEM AND WE NEED 4443 03:30:10,564 --> 03:30:12,900 HEAR FROM THEM AND THE 4444 03:30:12,967 --> 03:30:14,168 CHALLENGES WHILE RESPECTING THE 4445 03:30:14,234 --> 03:30:19,440 TIME AND THE THINGS THEY'RE 4446 03:30:19,506 --> 03:30:26,113 GOING THROUGH IS DIFFICULT. 4447 03:30:26,180 --> 03:30:28,615 >> AND NEED TO STUDY THE STAFF 4448 03:30:28,682 --> 03:30:30,317 AND IF YOU THINK THE ACADEMIC 4449 03:30:30,384 --> 03:30:31,485 PEOPLE ARE STRETCHED, THOSE 4450 03:30:31,552 --> 03:30:34,555 PEOPLE ARE OFTEN MORE STRETCHED, 4451 03:30:34,621 --> 03:30:39,193 HOME FIRST -- NURSES, ETCETERA. 4452 03:30:39,259 --> 03:30:40,995 I DON'T KNOW HOW MANY TRIED TO 4453 03:30:41,061 --> 03:30:44,498 DO RESEARCH WITH GENERAL 4454 03:30:44,565 --> 03:30:44,832 PEDIATRICIANS. 4455 03:30:44,898 --> 03:30:48,836 IT'S EASIER TO DO RESEARCH WITH 4456 03:30:48,902 --> 03:30:52,506 ICU DOCTORS THAN GENERAL 4457 03:30:52,573 --> 03:30:52,840 PEDIATRICIANS. 4458 03:30:52,906 --> 03:30:59,646 THEY HAVE SEVEN MINUTES. 4459 03:30:59,713 --> 03:31:00,714 AND UNDERSTANDING WHAT'S WORKING 4460 03:31:00,781 --> 03:31:02,449 AND NOT WORKING AND WHAT 4461 03:31:02,516 --> 03:31:03,984 SUPPORTS THEY NEED ALSO BRINGS 4462 03:31:04,051 --> 03:31:04,485 THE CHALLENGES OF TIME 4463 03:31:04,551 --> 03:31:13,427 PRESSURES. 4464 03:31:13,494 --> 03:31:19,366 >> MY THINKING EPIDEMIOLOGICALLY 4465 03:31:19,433 --> 03:31:22,970 AND RESEARCHER AND ALMOST ALL 4466 03:31:23,037 --> 03:31:24,138 DEATHS OCCUR IN HOSPITAL 4467 03:31:24,204 --> 03:31:26,440 SETTINGS AND EVEN THE CHILDREN 4468 03:31:26,507 --> 03:31:27,808 WHO HAVE CHRONIC CONDITIONS 4469 03:31:27,875 --> 03:31:29,343 THOUGH THERE'S BEEN A SHIFT TO 4470 03:31:29,410 --> 03:31:30,310 INCREASINGLY HAVING THAT HAPPEN 4471 03:31:30,377 --> 03:31:34,014 AT HOME, MANY OF THE KEY EVENTS 4472 03:31:34,081 --> 03:31:35,015 ARE OCCURRING IN HOSPITALS WITH 4473 03:31:35,082 --> 03:31:36,950 A CRISIS AND MAYBE DECISION TO 4474 03:31:37,017 --> 03:31:43,123 GO HOME. 4475 03:31:43,190 --> 03:31:44,191 WE'RE MIFK THE BOAT IF WE'RE NOT 4476 03:31:44,258 --> 03:31:45,926 LOOKING AT HOSPITALS. 4477 03:31:45,993 --> 03:31:47,594 THAT SAID THE HOME SETTING IS 4478 03:31:47,661 --> 03:31:52,733 WHERE MOST RESIDE IN THE YEAR 4479 03:31:52,800 --> 03:31:55,636 PRIOR TO THEIR DEATH. 4480 03:31:55,702 --> 03:31:58,205 OVER 90% OF THE TIME IN THE LAST 4481 03:31:58,272 --> 03:32:00,007 YEAR OF LIFE WILL BE AT HOME AND 4482 03:32:00,074 --> 03:32:02,776 THE CRISIS OF HOME NURSING WHILE 4483 03:32:02,843 --> 03:32:05,712 I'D LIKE TO ZERO IN ON HOSPICE 4484 03:32:05,779 --> 03:32:08,682 THE NATION CRISIS IN THE HOME 4485 03:32:08,749 --> 03:32:11,318 NURSING SYSTEM IS TRAGIC AND 4486 03:32:11,385 --> 03:32:12,586 HAVING INCREDIBLE REPERCUSSIONS 4487 03:32:12,653 --> 03:32:15,155 FOR WHAT KIND OF CARE ANY FAMILY 4488 03:32:15,222 --> 03:32:16,957 CAN RECEIVE IF THEY HAVE A CHILD 4489 03:32:17,024 --> 03:32:18,959 WHO NEEDS CARE IN THE HOME 4490 03:32:19,026 --> 03:32:19,193 SETTING. 4491 03:32:19,259 --> 03:32:22,229 ALL THESE ARE WONDERFUL ANSWERS 4492 03:32:22,296 --> 03:32:25,365 AND ONE CAN TAILER IT DEPENDING 4493 03:32:25,432 --> 03:32:30,637 ON THE WORKERS OF CARE AND 4494 03:32:30,704 --> 03:32:32,873 EMPHASIS ON RELIGIOUS 4495 03:32:32,940 --> 03:32:34,608 COMMUNITIES AND MORALITY. 4496 03:32:34,675 --> 03:32:40,647 ALL THOSE WILL BE KEY MODIFIERS 4497 03:32:40,714 --> 03:32:42,449 AND THERE'S CARE PROVIDED IN THE 4498 03:32:42,516 --> 03:32:45,319 HOSPITAL SETTING AT KEY MOMENTS 4499 03:32:45,385 --> 03:32:46,854 AND LIVING MOST THEIR LIFE AT 4500 03:32:46,920 --> 03:32:48,822 HOME IF THEY'RE NOT INFANTS WHO 4501 03:32:48,889 --> 03:32:54,228 HAVE JUST BEEN BORN. 4502 03:32:54,294 --> 03:32:55,028 >> THANK YOU. 4503 03:32:55,095 --> 03:32:56,396 THAT TIES IN BEFORE WITH YOUR 4504 03:32:56,463 --> 03:32:58,899 THOUGHTS BEFORE ABOUT SUFFERING. 4505 03:32:58,966 --> 03:32:59,700 THANK YOU. 4506 03:32:59,766 --> 03:33:05,172 THIRD AND LAST OF THE 4507 03:33:05,239 --> 03:33:14,715 INTERACTIVE PIECE AS WE THE MOST 4508 03:33:14,781 --> 03:33:16,283 INTERESTING TOPIC AND WE HEARD 4509 03:33:16,350 --> 03:33:18,051 THINGS WE CAN AND SHOULD BE 4510 03:33:18,118 --> 03:33:18,252 DOING. 4511 03:33:18,318 --> 03:33:28,795 WHAT'S MOST PRESSING FOR US. 4512 03:33:33,233 --> 03:33:43,644 WHAT'S MOST PRESSING FOR US? 4513 03:33:54,488 --> 03:33:57,324 I LOVE WE STARTED THE DAY 4514 03:33:57,391 --> 03:33:59,593 YESTERDAY WITH EQUITY AND WAS 4515 03:33:59,660 --> 03:34:01,094 WOVEN THROUGH SO MANY TALKS AND 4516 03:34:01,161 --> 03:34:02,963 LOOKS LIKE IT'S STILL CENTRAL TO 4517 03:34:03,030 --> 03:34:04,398 THE CARE WE DELIVER AND RESEARCH 4518 03:34:04,464 --> 03:34:12,673 WE SHOULD BE THINKING ABOUT. 4519 03:34:12,739 --> 03:34:14,107 AS THEY'RE STILL COMING IN WHO 4520 03:34:14,174 --> 03:34:17,244 IS WILLING TO GO FIRST AND TELL 4521 03:34:17,311 --> 03:34:17,911 US WHAT THEY THINK ABOUT THESE 4522 03:34:17,978 --> 03:34:28,088 IDEAS? 4523 03:34:33,961 --> 03:34:34,761 >> I HAVE NO ARGUMENT WITH ANY 4524 03:34:34,828 --> 03:34:35,295 OF THEM. 4525 03:34:35,362 --> 03:34:37,097 I DON'T KNOW WHAT TO SAY OTHER 4526 03:34:37,164 --> 03:34:39,366 THAN YES, I SUPPORT ALL THOSE 4527 03:34:39,433 --> 03:34:39,766 THINGS. 4528 03:34:39,833 --> 03:34:46,139 THEY ALL FEEL VERY IMPORTANT. 4529 03:34:46,206 --> 03:34:47,841 >> AND HAVE TO PRIORITIZE AND 4530 03:34:47,908 --> 03:34:49,476 THINKING WHERE DO WE PUT OUR 4531 03:34:49,543 --> 03:34:50,978 RESOURCES AND THINK ABOUT IN 4532 03:34:51,044 --> 03:34:58,051 TERMS OF OUR PRIORITIES. 4533 03:34:58,118 --> 03:34:59,052 >> IT'S A TOUGH SPACE. 4534 03:34:59,119 --> 03:35:02,322 THE POPULATIONS WE TAKE CARE OF, 4535 03:35:02,389 --> 03:35:05,392 THIS IS A LONGITUDINAL ILLNESS 4536 03:35:05,459 --> 03:35:06,827 FOR MANY OF THEM THAT OCCURS 4537 03:35:06,893 --> 03:35:11,565 OVER YEARS. 4538 03:35:11,632 --> 03:35:14,301 EVEN ON A FAMILY BEREAVEMENT 4539 03:35:14,368 --> 03:35:16,703 SIDE THIS IS WORK THAT COULD BE 4540 03:35:16,770 --> 03:35:20,207 DONE OVER A DECADE OR MORE WITH 4541 03:35:20,274 --> 03:35:22,643 THE SAME PATIENT AND FAMILY AS 4542 03:35:22,709 --> 03:35:23,210 THE CENTER. 4543 03:35:23,277 --> 03:35:29,216 HOW DO WE THINK OF PRIORITIZING 4544 03:35:29,283 --> 03:35:30,484 LIMITED RESOURCES FOR FUNDING TO 4545 03:35:30,550 --> 03:35:35,722 ANSWER QUESTIONS WE MAY NOT GET 4546 03:35:35,789 --> 03:35:38,558 TO FOR 10 PLUS YEAR. 4547 03:35:38,625 --> 03:35:44,531 IF I HAD A BUCKET OF MONEY, I 4548 03:35:44,598 --> 03:35:50,070 WOULD SAY WE HAVE HUNDREDS OF 4549 03:35:50,137 --> 03:35:52,306 QUESTIONS TO ANSWER THAT HAVE A 4550 03:35:52,372 --> 03:35:53,974 HIGH DEGREE OF PRIORITY THAT 4551 03:35:54,041 --> 03:35:55,742 MEANS SOMETHING TO SOMEONE AND 4552 03:35:55,809 --> 03:36:00,547 WE SHOULD ANSWER THE ONES WE 4553 03:36:00,614 --> 03:36:10,857 SHOULD ANSWER. 4554 03:36:19,366 --> 03:36:21,601 THERE'S A NUMBER OF THINGS WE 4555 03:36:21,668 --> 03:36:24,705 CAN GET TO TO START. 4556 03:36:24,771 --> 03:36:29,609 THAT'S MY CORNER OF THE WALL 4557 03:36:29,676 --> 03:36:29,943 PHILOSOPHY. 4558 03:36:30,010 --> 03:36:31,511 WHAT LOW HANGING FRUIT YOU GO 4559 03:36:31,578 --> 03:36:34,915 AFTER FIRST WHEN YOU'RE TRYING 4560 03:36:34,981 --> 03:36:40,654 TO GET BUY IN. 4561 03:36:40,721 --> 03:36:44,391 SCIENTI 4562 03:36:44,458 --> 03:36:46,293 SCIENTISTS ANY THOUGHTS TO WHAT 4563 03:36:46,360 --> 03:36:46,693 TAMMY SAYS? 4564 03:36:46,760 --> 03:36:49,996 WHAT ARE THE LOW-HANGING FRUITS? 4565 03:36:50,063 --> 03:36:51,832 >> I GUESS I HAVE A DIFFERENT 4566 03:36:51,898 --> 03:36:52,999 PERSPECTIVE WHICH IS I THINK 4567 03:36:53,066 --> 03:36:56,703 MANY OF US HAVE BEEN DOING WORK 4568 03:36:56,770 --> 03:37:00,340 THAT'S HARD TO DO. 4569 03:37:00,407 --> 03:37:02,943 WE TACKLE COMPLEX STICK YO 4570 03:37:03,009 --> 03:37:04,478 PROBLEMS SOMETIMES IMPERFECTLY. 4571 03:37:04,544 --> 03:37:06,480 I LOVE EQUITY'S AT THE CENTER 4572 03:37:06,546 --> 03:37:08,915 AND THAT'S A STRENGTH OF WHERE 4573 03:37:08,982 --> 03:37:10,684 WE NEED TO HEAD IN OUR FOCUS AND 4574 03:37:10,751 --> 03:37:15,889 A LOT OF THAT HAS TO DO WITH 4575 03:37:15,956 --> 03:37:16,656 COMMUNITY-BASED RESEARCH 4576 03:37:16,723 --> 03:37:18,492 CO-PRODUCTION AND INTERVENTIONS 4577 03:37:18,558 --> 03:37:20,694 AND THEY GO HAND IN HAND AND I 4578 03:37:20,761 --> 03:37:26,299 SEE THEM AS WHERE WE NEED TO GO 4579 03:37:26,366 --> 03:37:31,605 IN THE FUTURE AND HOW DO WE MAKE 4580 03:37:31,671 --> 03:37:36,910 SURE WE HAVE RESEARCH EERS AND 4581 03:37:36,977 --> 03:37:38,512 INVESTMENT IN CAREER DEVELOPMENT 4582 03:37:38,578 --> 03:37:40,447 AWARDS AND HELPING PEOPLE ON 4583 03:37:40,514 --> 03:37:47,921 THEIR CAREER TRAJECTORY AND 4584 03:37:47,988 --> 03:37:48,855 INTERPROFESSIONAL RESEARCHERS 4585 03:37:48,922 --> 03:37:58,965 ARE THINGS I WOULD EMPHASIZE. 4586 03:37:59,032 --> 03:38:02,636 >> CHRIS OR RENE, ANYTHING TO 4587 03:38:02,702 --> 03:38:03,236 ADD? 4588 03:38:03,303 --> 03:38:05,038 >> I'LL ZONE IN ON THE SUFFERING 4589 03:38:05,105 --> 03:38:07,140 OF THE CHILD THOUGH A LOT OF MY 4590 03:38:07,207 --> 03:38:11,778 WORK IS IN THE SUFFERING OF THE 4591 03:38:11,845 --> 03:38:17,284 FAMILY AND CAREGIVERS OF VARIOUS 4592 03:38:17,350 --> 03:38:26,960 KINDS. 4593 03:38:27,027 --> 03:38:29,596 AND WHEN MY CHILD WAS SUFFERING, 4594 03:38:29,663 --> 03:38:30,997 ALMOST EVERYTHING ELSE DIDN'T 4595 03:38:31,064 --> 03:38:32,332 MATTER AND THAT HAS TO BE SOLVED 4596 03:38:32,399 --> 03:38:33,600 BEFORE I CAN THINK OF EVERYTHING 4597 03:38:33,667 --> 03:38:35,068 ELSE I'M DOING. 4598 03:38:35,135 --> 03:38:39,406 THAT FIELD LIKE A REALLY 4599 03:38:39,473 --> 03:38:40,207 MEANINGFUL PRIORITY. 4600 03:38:40,273 --> 03:38:42,909 JAMIE HAS GOOD IDEAS ABOUT 4601 03:38:42,976 --> 03:38:43,210 MEDICATIONS. 4602 03:38:43,276 --> 03:38:44,945 WE HEARD MULTIPLE SPEAKERS TALK 4603 03:38:45,011 --> 03:38:46,713 ABOUT HOW MOST THE PATIENTS ARE 4604 03:38:46,780 --> 03:38:49,883 ON IS SIX TO 12 TO 18 4605 03:38:49,950 --> 03:38:50,183 MEDICATIONS. 4606 03:38:50,250 --> 03:38:51,451 IT FEELS LIKE THERE'S IMPORTANT 4607 03:38:51,518 --> 03:38:53,353 WORK TO BE DONE IN THIS SPACE OF 4608 03:38:53,420 --> 03:38:58,692 SYMPTOM MANAGEMENT. 4609 03:38:58,758 --> 03:39:06,166 >> I ECHO THAT. 4610 03:39:06,233 --> 03:39:07,434 NIN-FUNDED SCIENTISTS OVER THE 4611 03:39:07,501 --> 03:39:10,237 YEARS WHERE DO I THINK SCIENCE 4612 03:39:10,303 --> 03:39:13,240 CAN PARTICULARLY HELP OPPOSED TO 4613 03:39:13,306 --> 03:39:16,710 ADVOCACY OPPOSED TO BUSINESS 4614 03:39:16,776 --> 03:39:19,279 ACUMEN OPPOSED TO WORKFORCE AND 4615 03:39:19,346 --> 03:39:21,281 HEALTH SERVICES RESEARCH. 4616 03:39:21,348 --> 03:39:26,653 I THINK THE LITTLE WORD THAT 4617 03:39:26,720 --> 03:39:35,028 SAYS INTERVENTION SYMPTOMS AN 4618 03:39:35,095 --> 03:39:37,531 WHAT IS IMPORTANT IN RELIEVING 4619 03:39:37,597 --> 03:39:40,867 SUFFERING IN CLEAR DEFINED 4620 03:39:40,934 --> 03:39:44,004 POPULATIONS AND WITH A DEFINED 4621 03:39:44,070 --> 03:39:46,773 SOURCE OF THE SUFFERING IS 4622 03:39:46,840 --> 03:39:47,807 PARAMOUNT OF IMPORTANCE AND IF 4623 03:39:47,874 --> 03:39:49,876 WE GAIN KNOWLEDGE IN THE SPACE 4624 03:39:49,943 --> 03:39:51,545 IT'S APPLIED EQUITABLY. 4625 03:39:51,611 --> 03:39:54,881 I THINK WE ALWAYS WANT EQUITY TO 4626 03:39:54,948 --> 03:39:58,051 BE IMPROVING THE OUTCOMES PEOPLE 4627 03:39:58,118 --> 03:39:59,419 ARE HAVING AND I'M WORRIED WE 4628 03:39:59,486 --> 03:40:08,728 DON'T HAVE THE MEANS TO IMPROVE 4629 03:40:08,795 --> 03:40:14,968 THEM. 4630 03:40:15,035 --> 03:40:20,473 BETTER WAYS TO DO MANY OF THE 4631 03:40:20,540 --> 03:40:27,647 THINGS THAT HAVE BEEN DISCUSSED 4632 03:40:27,714 --> 03:40:34,487 TODAY AND YESTERDAY AND MAKE 4633 03:40:34,554 --> 03:40:36,723 SURE THEY'RE BEING DONE IN 4634 03:40:36,790 --> 03:40:38,925 MULTIPLE PLACES. 4635 03:40:38,992 --> 03:40:39,659 >> WELL, THANK YOU. 4636 03:40:39,726 --> 03:40:46,399 YOU GUYS ARE AMAZING ADVOCATES 4637 03:40:46,466 --> 03:40:48,969 FOR OUR RESEARCH AND THIS CANNOT 4638 03:40:49,035 --> 03:40:52,672 BE DONE WITHOUT YOUR LEADERSHIP 4639 03:40:52,739 --> 03:40:55,275 AND RESEARCH AND THINKING ABOUT 4640 03:40:55,342 --> 03:40:56,343 THE TOPICS AND THEY'RE HELPFUL 4641 03:40:56,409 --> 03:40:57,777 FOR US TO THINK ABOUT AS WE 4642 03:40:57,844 --> 03:41:02,983 THINK WHERE WE'LL PUT OUR 4643 03:41:03,049 --> 03:41:07,187 RESOURCES IN THE FUTURE I WANT 4644 03:41:07,253 --> 03:41:09,623 TO SAY THANK YOU TO GUYS AS OUR 4645 03:41:09,689 --> 03:41:11,358 PANELIST AND EVERYONE LAST TWO 4646 03:41:11,424 --> 03:41:11,925 DAYS. 4647 03:41:11,992 --> 03:41:14,794 THE FELLOWSHIP HAS BEEN AMAZING 4648 03:41:14,861 --> 03:41:18,131 SO SPEND TIME WITH THOUGHT 4649 03:41:18,198 --> 03:41:20,700 LEADERS AND FOLKS WHO I HAVE 4650 03:41:20,767 --> 03:41:22,869 RESPECTED IN THE FIELD FOR AS 4651 03:41:22,936 --> 03:41:24,704 LONG AS I'VE BEEN IN THE FIELD. 4652 03:41:24,771 --> 03:41:26,973 YOU REALLY BROUGHT HOME A LOT OF 4653 03:41:27,040 --> 03:41:28,541 MESSAGES TO US THAT ARE REALLY 4654 03:41:28,608 --> 03:41:30,310 IMPORTANT FOR US TO THINK ABOUT 4655 03:41:30,377 --> 03:41:32,012 WHERE WE GO IN THE FUTURE AND 4656 03:41:32,078 --> 03:41:34,047 SPENT TIME ALSO TALKING ABOUT 4657 03:41:34,114 --> 03:41:36,783 THE DEPTH OF THE RESEARCH THAT 4658 03:41:36,850 --> 03:41:37,417 WE'VE ALREADY ACCOMPLISHED THUS 4659 03:41:37,484 --> 03:41:38,418 FAR. 4660 03:41:38,485 --> 03:41:42,055 SO WITH THAT I JUST WANT TO SAY 4661 03:41:42,122 --> 03:41:44,991 THANK YOU FOR YOUR TIME. 4662 03:41:45,058 --> 03:41:46,593 THANK YOU TO ALL OF YOU OUT 4663 03:41:46,660 --> 03:41:50,964 THERE WHO JOINED US FOR THE LAST 4664 03:41:51,031 --> 03:41:51,531 TWO DAYS. 4665 03:41:51,598 --> 03:41:53,166 WE NEED YOU TO KNOW THIS IS 4666 03:41:53,233 --> 03:41:56,336 RECORDED AND AVAILABLE ON 4667 03:41:56,403 --> 03:42:02,842 VIDEOCAST LIKE IN PERPETUITY. 4668 03:42:02,909 --> 03:42:06,346 IF YOU DIDN'T CATCH PIECES OR 4669 03:42:06,413 --> 03:42:08,281 TEAM MEMBERS DIDN'T CATCH 4670 03:42:08,348 --> 03:42:11,017 PIECES, LET THEM KNOW IT'S 4671 03:42:11,084 --> 03:42:11,885 AVAILABLE. 4672 03:42:11,951 --> 03:42:13,420 WE RECOGNIZE THE DAY IS NOT EASY 4673 03:42:13,486 --> 03:42:14,954 FOR EVERYONE AND ESPECIALLY 4674 03:42:15,021 --> 03:42:17,323 THOSE CELEBRATING THE HOLIDAYS 4675 03:42:17,390 --> 03:42:21,261 SO WE APPRECIATE THAT YOU FOUND 4676 03:42:21,327 --> 03:42:24,698 TIME TO SPENDIUS OVER THE LAST 4677 03:42:24,764 --> 03:42:25,098 TWO DAYS. 4678 03:42:25,165 --> 03:42:29,502 -- SPEND WITH US OVER THE LAST 4679 03:42:29,569 --> 03:42:30,570 TWO DAYS. 4680 03:42:30,637 --> 03:42:34,007 I MENTIONED THIS YESTERDAY AND 4681 03:42:34,074 --> 03:42:36,676 TO SCAN THE QR CODE AND THE 4682 03:42:36,743 --> 03:42:40,714 INTENT TO PUBLIC INFORMATION 4683 03:42:40,780 --> 03:42:44,117 ABOUT THE CONSORTIUM FOR 4684 03:42:44,184 --> 03:42:46,286 PALLIATIVE CARE ACROSS THE LIFE 4685 03:42:46,352 --> 03:42:49,823 SPAN AN ROHAN STARTED OUT 4686 03:42:49,889 --> 03:42:54,094 TELLING US ABOUT THE COMMITMENT 4687 03:42:54,160 --> 03:42:54,961 TO SERIOUS ILLNESS AND 4688 03:42:55,028 --> 03:42:56,696 PALLIATIVE CARE AND THIS 4689 03:42:56,763 --> 03:43:00,700 CONSORTIUM IS A TRANS NIH 4690 03:43:00,767 --> 03:43:05,171 ATTEMPT TO REALLY LOOK AT PAFLT 4691 03:43:05,238 --> 03:43:09,642 CARE ACROSS THE LIFE SPAN AND 4692 03:43:09,709 --> 03:43:13,580 SCAN THE QR CODE AND THERE BE 4693 03:43:13,646 --> 03:43:15,215 MORE INFORMATION IN THE NEW 4694 03:43:15,281 --> 03:43:15,648 YEAR. 4695 03:43:15,715 --> 03:43:17,751 WITH THAT I'M INDEBTED WITH YOU 4696 03:43:17,817 --> 03:43:22,122 FOR SPENDING TIME WITH US AND 4697 03:43:22,188 --> 03:43:23,189 SHARING YOUR KNOWLEDGE. 4698 03:43:23,256 --> 03:43:24,758 IF WE DIDN'T GET TO YOUR 4699 03:43:24,824 --> 03:43:30,997 QUESTION, CONTACT ME, 4700 03:43:31,064 --> 03:43:31,965 TESSIE.OCTOBER@NIH.gov AND CAN 4701 03:43:32,031 --> 03:43:32,465 GET THEM TO THE SPEAKER. 4702 03:43:32,532 THANK YOU AGAIN.