1 00:00:11,440 --> 00:00:13,640 Welcome to the Clinical Center Grand Rounds, 2 00:00:13,640 --> 00:00:17,440 a weekly series of educational lectures for physicians and 3 00:00:17,440 --> 00:00:20,080 health care professionals broadcast from the Clinical 4 00:00:20,080 --> 00:00:23,040 Center at the National Institutes of Health in 5 00:00:23,040 --> 00:00:24,840 Bethesda, MD. 6 00:00:24,840 --> 00:00:28,400 The NIH Clinical Center is the world's largest hospital totally 7 00:00:28,400 --> 00:00:32,080 dedicated to investigational research and leads the global 8 00:00:32,080 --> 00:00:35,040 effort in training today's investigators and discovering 9 00:00:35,040 --> 00:00:37,200 tomorrow's cures. 10 00:00:37,200 --> 00:00:47,600 Learn more by visiting us online at http://clinicalcenter.nih.gov 11 00:00:47,600 --> 00:00:50,440 >>FOR TODAY WE WILL DISCUSS THE 12 00:00:50,440 --> 00:00:52,200 QUESTION OF FIGURING OUT WHEN 13 00:00:52,200 --> 00:00:54,400 THE POTENTIAL BENEFITS OF 14 00:00:54,400 --> 00:00:56,160 INTENSIVE CARE JUSTIFY THE 15 00:00:56,160 --> 00:00:57,800 BURDENS AND THE RISKS. 16 00:00:57,800 --> 00:01:00,320 SO THIS WAS A VERY HARD CASE FOR 17 00:01:00,320 --> 00:01:01,720 A LOT OF PEOPLE WHO WERE 18 00:01:01,720 --> 00:01:03,320 INVOLVED IN IT AT THE NIH 19 00:01:03,320 --> 00:01:04,800 CLINICAL CENTER AND I JUST WANT 20 00:01:04,800 --> 00:01:07,240 TO EMPHASIZE THAT THE GOAL OF 21 00:01:07,240 --> 00:01:09,320 THESE SESSIONS, ISN'T TO DISSECT 22 00:01:09,320 --> 00:01:11,880 THE SPECIFIC CASES, NOT TO DO A 23 00:01:11,880 --> 00:01:15,080 POSTMORTEM ON A PARTICULAR CASE. 24 00:01:15,080 --> 00:01:17,240 INSTEAD IT'S THE USE THE CASE AS 25 00:01:17,240 --> 00:01:18,240 A BEGINNING POINT FOR THINKING 26 00:01:18,240 --> 00:01:19,360 ABOUT THE IMPORTANT AND 27 00:01:19,360 --> 00:01:21,720 INTERESTING ETHICAL ISSUES THAT 28 00:01:21,720 --> 00:01:24,400 GET RAISED BY THE CASE. 29 00:01:24,400 --> 00:01:27,480 SO I THINK IN THEORY AT LEAST 30 00:01:27,480 --> 00:01:29,600 FOR ANSWER TO THE QUESTION TODAY 31 00:01:29,600 --> 00:01:34,400 IS PRETTY EASY, HOW DO YOU ADD 32 00:01:34,400 --> 00:01:37,160 UP THE POTENTIAL BENEFITS OF 33 00:01:37,160 --> 00:01:41,480 INTENSIVE CARE AND JUSTIFY THE 34 00:01:41,480 --> 00:01:45,360 RISKS, SO SO PROBLEM IS SOME 35 00:01:45,360 --> 00:01:46,280 PHILOSOPHERS HAVE BEEN TRYING TO 36 00:01:46,280 --> 00:01:47,480 DO THAT FOR A NUMBER OF YEARS 37 00:01:47,480 --> 00:01:49,840 AND NO 1'S COME UP WITH AN 38 00:01:49,840 --> 00:01:51,400 ALGORITHM TO DO THAT 39 00:01:51,400 --> 00:01:51,800 EFFECTIVELY? 40 00:01:51,800 --> 00:01:53,440 SO WHERE DOES THAT LEAVE US? 41 00:01:53,440 --> 00:01:54,880 IT LEAVES US WITH OUR OWN 42 00:01:54,880 --> 00:01:55,960 JUDGMENT, WE HAVE TO MAKE 43 00:01:55,960 --> 00:01:57,520 DECISIONS ABOUT WHEN WE THINK 44 00:01:57,520 --> 00:01:59,080 THE POTENTIAL BENEFITS JUSTICE 45 00:01:59,080 --> 00:01:59,560 THE RISK. 46 00:01:59,560 --> 00:02:01,000 ONE OF THE CHALLENGES THERE IS 47 00:02:01,000 --> 00:02:02,880 THAT OUR JUDGMENTS CAN OFTEN BE 48 00:02:02,880 --> 00:02:04,680 INFLUENCED BY OUR ROLE IN THE 49 00:02:04,680 --> 00:02:07,200 CASE, OUR PERSPECTIVE ON THE 50 00:02:07,200 --> 00:02:07,400 CASE. 51 00:02:07,400 --> 00:02:09,000 SO IF YOU'RE A CLINICIAN, YOU 52 00:02:09,000 --> 00:02:10,600 MIGHT THINK, WELL, A VERY, VERY 53 00:02:10,600 --> 00:02:11,600 LOW CHANCE OF BENEFIT, THAT 54 00:02:11,600 --> 00:02:14,480 MEANS I WILL HAVE TO TREAT MAYBE 55 00:02:14,480 --> 00:02:15,920 HUNDREDS OF PATIENTS AND BURDEN 56 00:02:15,920 --> 00:02:17,800 HUNDREDS OF PATIENTS TO BENEFIT 57 00:02:17,800 --> 00:02:18,120 EVEN 1. 58 00:02:18,120 --> 00:02:19,600 THAT DOESN'T SEEM LEAK A VERY 59 00:02:19,600 --> 00:02:20,000 GOOD DEAL. 60 00:02:20,000 --> 00:02:21,320 ON THE OTHER HAND IF YOU'RE THE 61 00:02:21,320 --> 00:02:24,760 PATIENT OR THE SURROGATE, EVEN A 62 00:02:24,760 --> 00:02:26,680 VERY, VERY LOW CHANCE OF 63 00:02:26,680 --> 00:02:27,800 MEANINGFUL RECOVERY MAY BE THE 64 00:02:27,800 --> 00:02:31,320 ONLY CHANCE YOU HAVE AND IT'S 65 00:02:31,320 --> 00:02:33,680 SOMETHING THAT YOU WANT TO TAKE. 66 00:02:33,680 --> 00:02:34,720 THIS CHALLENGE WAS ILLUSTRATED 67 00:02:34,720 --> 00:02:36,800 FOR ME A COUPLE WEEKS AGO, ON A 68 00:02:36,800 --> 00:02:38,560 DIFFERENT CASE I WAS CONSULTED 69 00:02:38,560 --> 00:02:40,840 ON, WHERE A WOMAN WAS ACTING AS 70 00:02:40,840 --> 00:02:42,960 A SURROGATE FOR HER VERY SICK 71 00:02:42,960 --> 00:02:45,240 HUSBAND AND WE HAD A LONG 72 00:02:45,240 --> 00:02:46,560 CONVERSATION ABOUT HOW SHE MIGHT 73 00:02:46,560 --> 00:02:48,200 MAKE DECISIONS AND CARE FOR HER 74 00:02:48,200 --> 00:02:49,800 HUSBAND FOR ABOUT AN HOUR, TALK 75 00:02:49,800 --> 00:02:52,800 ABOUT THE RISKS AND BENEFITS AND 76 00:02:52,800 --> 00:02:54,000 HOW SHE COULD BALANCE THEM. 77 00:02:54,000 --> 00:02:55,600 AT THE END OF THE CONVERSATION 78 00:02:55,600 --> 00:02:57,120 SHE LOOKED AT ME AND SAID, IS 79 00:02:57,120 --> 00:02:59,760 THERE ANY CHANCE AT ALL THAT HE 80 00:02:59,760 --> 00:03:00,440 WILL RECOVER? 81 00:03:00,440 --> 00:03:01,920 AND ALTHOUGH I'VE BEEN DOING 82 00:03:01,920 --> 00:03:03,440 THIS FOR 25 YEARS NOW, I STILL 83 00:03:03,440 --> 00:03:04,560 CAN'T FIGURE OUT THE RIGHT WAY 84 00:03:04,560 --> 00:03:05,840 TO ANSWER THAT QUESTION AND SO 85 00:03:05,840 --> 00:03:07,360 HOPEFULLY THIS IS SOMETHING WE 86 00:03:07,360 --> 00:03:08,880 CAN TACK ABOUT AND MAYBE I WILL 87 00:03:08,880 --> 00:03:11,400 LEARN SOMETHING FOR TODAY. 88 00:03:11,400 --> 00:03:13,160 SO IN HAVING THIS DISCUSSION, WE 89 00:03:13,160 --> 00:03:16,560 HAVE 3 VERY TALENTED PEOPLE, TO 90 00:03:16,560 --> 00:03:17,840 SAVE TIME AND ALSO TO KEEP THE 91 00:03:17,840 --> 00:03:20,200 REST OF US FROM FEELING BAD BY 92 00:03:20,200 --> 00:03:21,400 LISTENING TO ALL THE THINGS 93 00:03:21,400 --> 00:03:23,040 THEY'VE DONE IN THEIR CAREERS, I 94 00:03:23,040 --> 00:03:25,080 WILL JUST INTRODUCE THEM VERY 95 00:03:25,080 --> 00:03:28,560 BRIEFLY SO FIRST IS ALEX 96 00:03:28,560 --> 00:03:30,400 FREEMAN, SHE'S A PHYSICIAN AND 97 00:03:30,400 --> 00:03:33,960 DIRECTOR OF THE PRIMARY IMMUNE 98 00:03:33,960 --> 00:03:36,600 DEFICIENCY CLINIC AT THE NIAID 99 00:03:36,600 --> 00:03:40,200 AT THE NIH, NEXT AND DAN 100 00:03:40,200 --> 00:03:41,520 CHERTOWD, AND HE A ATTENDING 101 00:03:41,520 --> 00:03:42,720 PHYSICIAN AT THE ICU. 102 00:03:42,720 --> 00:03:44,680 AND THEN THE PERSON WHO WAS 103 00:03:44,680 --> 00:03:46,080 GRACIOUS ENOUGH MY INVITATION TO 104 00:03:46,080 --> 00:03:48,400 HELP ANSWER 3 OR 4 IMPOSSIBLE 105 00:03:48,400 --> 00:03:49,960 QUESTIONS IN UNDER 20 MINUTE 106 00:03:49,960 --> 00:03:50,400 SYSTEM DOUG WHITE. 107 00:03:50,400 --> 00:03:52,600 DOUG WHITE IS A PROFESSOR OF 108 00:03:52,600 --> 00:03:54,520 CRITICAL CARE MEDICINE, HE'S 109 00:03:54,520 --> 00:03:57,000 ALSO THE UPMC ENDOWED CHAIR FOR 110 00:03:57,000 --> 00:03:59,240 ETHIC IN CRITICAL CARE MEDICINE 111 00:03:59,240 --> 00:04:00,040 AT THE UNIVERSITY OF PITTSBURGH 112 00:04:00,040 --> 00:04:02,120 AND DOUG IS WIDELY RECOGNIZED AS 113 00:04:02,120 --> 00:04:03,680 1 OF THE LEADERS IN THINKING 114 00:04:03,680 --> 00:04:05,120 ABOUT THE ETHICS OF CRITICAL 115 00:04:05,120 --> 00:04:07,200 CARE AND ALSO SURROGATE DECISION 116 00:04:07,200 --> 00:04:07,440 MAKING. 117 00:04:07,440 --> 00:04:09,400 SO IT'S GREAT TO HAVE HIM HERE. 118 00:04:09,400 --> 00:04:14,080 SO TO GET US GOING, ALEX? 119 00:04:14,080 --> 00:04:14,440 >> THANK YOU. 120 00:04:14,440 --> 00:04:17,560 I'M JUST GOING TO SHARE MY 121 00:04:17,560 --> 00:04:17,800 SLIDES. 122 00:04:17,800 --> 00:04:19,280 OKAY, THANK YOU FOR THE 123 00:04:19,280 --> 00:04:22,160 INVITATION TO SPEAK TODAY, IT'S 124 00:04:22,160 --> 00:04:25,200 ALWAYS A LITTLE TOUGH WHEN YOUR 125 00:04:25,200 --> 00:04:27,000 PATIENT IS CHOSEN FOR SOMETHING 126 00:04:27,000 --> 00:04:28,640 LIKE THIS, I DON'T HAVE ANY 127 00:04:28,640 --> 00:04:30,600 CONFLICTS OF INTEREST, I WILL 128 00:04:30,600 --> 00:04:31,560 DISCUSS MEDICATIONS THAT ARE OFF 129 00:04:31,560 --> 00:04:33,800 LABEL JUST BECAUSE THE DIAGNOSIS 130 00:04:33,800 --> 00:04:35,000 WAS UNCLEAR AND THEN QUICKLY 131 00:04:35,000 --> 00:04:37,360 THERE ARE MY LEARNING OBJECTIVES 132 00:04:37,360 --> 00:04:38,200 FOR THE CME. 133 00:04:38,200 --> 00:04:40,800 SO THIS PATIENT WAS REFERRED TO 134 00:04:40,800 --> 00:04:43,400 ME BACK IN 2017 TO BE SEEN IN 135 00:04:43,400 --> 00:04:44,400 OUR PRIMARY IMMUNE DEFICIENCY 136 00:04:44,400 --> 00:04:47,480 CLINIC FOR WORK UP OF HER IMMUNE 137 00:04:47,480 --> 00:04:49,160 DISREGULATION, SHE HAD A 138 00:04:49,160 --> 00:04:51,200 COMBINATION OF BOTH IMMUNE 139 00:04:51,200 --> 00:04:52,080 DEFICIENCY SIGNS WITH PREVIOUS 140 00:04:52,080 --> 00:04:55,400 DISPOSITION TO A BUNCH OF 141 00:04:55,400 --> 00:04:57,440 INFECTIONS AS WELL AS SIGNS OF 142 00:04:57,440 --> 00:04:59,840 AUTOIMMUNITY WITH AN UNKNOWN 143 00:04:59,840 --> 00:05:00,640 ETIOLOGY, AND WORSENING 144 00:05:00,640 --> 00:05:01,080 SOMETIMES. 145 00:05:01,080 --> 00:05:03,000 SO AT THE TIME WE SAW HER SHE 146 00:05:03,000 --> 00:05:05,440 WAS 19 AND SHE HAD A LIFETIME OF 147 00:05:05,440 --> 00:05:06,360 RASHES AND RECURRENT INFECTIONS 148 00:05:06,360 --> 00:05:07,800 AND CAME TO ME IN PART BECAUSE I 149 00:05:07,800 --> 00:05:10,760 SEE SOME OF THE PRIMARY IMMUNE 150 00:05:10,760 --> 00:05:13,000 DEFICIENCIES SEEN AT NIH THAT 151 00:05:13,000 --> 00:05:15,120 HAVE CHOSE CHARACTER IEOF 152 00:05:15,120 --> 00:05:17,000 THETICS, LIKE THE HYPER IGE 153 00:05:17,000 --> 00:05:17,320 SYNDROMES. 154 00:05:17,320 --> 00:05:20,200 Y SO SHE HAD A RASH SINCE 155 00:05:20,200 --> 00:05:22,160 INFANCY, IT WAS DIAGNOSED AS 156 00:05:22,160 --> 00:05:24,400 ECZEMA, OVER THE YEARS, FAILED 157 00:05:24,400 --> 00:05:26,120 MANY, MANY TYPES OF THERAPIES 158 00:05:26,120 --> 00:05:27,800 THAT ARE EEIVELGTIVE FOR ATOPIC 159 00:05:27,800 --> 00:05:29,200 DERMATITIS AND SHE WAS TREATED 160 00:05:29,200 --> 00:05:34,080 MANY TIMES WITH COURSES OF ORAL 161 00:05:34,080 --> 00:05:36,040 STEROIDS LIKE PREDNISON E WHICH 162 00:05:36,040 --> 00:05:46,240 CAN WEAKEN THE IMMUNE SYSTEM 163 00:05:46,240 --> 00:05:48,800 WHEN YOU TAKE THEM--THAT MEANS 164 00:05:48,800 --> 00:05:54,000 ALL OF HER HAIR ON HER BODY FELL 165 00:05:54,000 --> 00:05:55,960 OUT WHEN SHE WAS ABOUT 16 YEARS 166 00:05:55,960 --> 00:05:58,280 OLD AND SHE HAD RECURRENT 167 00:05:58,280 --> 00:05:59,000 PNEUMONIAS OVER THE YEARS 168 00:05:59,000 --> 00:06:00,840 STARTING AFFAIRS TEAM LEADER 9 169 00:06:00,840 --> 00:06:02,600 YEARS, 1 TIME WITH A SEVERAL 170 00:06:02,600 --> 00:06:03,040 WEEK HOSPITALIZATION. 171 00:06:03,040 --> 00:06:05,520 SHE WAS A CARRIER FOR 1 OF THE 172 00:06:05,520 --> 00:06:06,480 CYSTIC FIBROSIS MUTATIONS, IT 173 00:06:06,480 --> 00:06:07,560 WAS RUNCLEAR IF THAT WAS 174 00:06:07,560 --> 00:06:08,920 CONTRIBUTING IN THAT WAY BUT SHE 175 00:06:08,920 --> 00:06:12,200 DID NOT HAVE CF. 176 00:06:12,200 --> 00:06:15,520 SHE'S HAD MUC O KAN--KANA 177 00:06:15,520 --> 00:06:18,040 TIANYLIOUS CANDIDIASIS, SHE WAS 178 00:06:18,040 --> 00:06:19,160 GETTING YEAST INFECTIONS, 179 00:06:19,160 --> 00:06:20,600 THRUSH, YEAST IN THE MOUTH AND A 180 00:06:20,600 --> 00:06:23,960 LOT OF TROUBLE WITH WARTS AND 181 00:06:23,960 --> 00:06:25,280 VIRAL SKIN INFECTIONS SINCE SHE 182 00:06:25,280 --> 00:06:27,480 WAS 8 YEARS OLD, THEY HAD BEEN 183 00:06:27,480 --> 00:06:29,320 TREATING MANY, MANY DIFFERENT 184 00:06:29,320 --> 00:06:30,600 WAYS BUT KEPT COMING BACK AND 185 00:06:30,600 --> 00:06:33,000 HAD NOT BEEN SUCCESSFUL IN TERMS 186 00:06:33,000 --> 00:06:33,400 OF THERAPY. 187 00:06:33,400 --> 00:06:35,840 SO SHE HAD BEEN FOLLOWED EMORY 188 00:06:35,840 --> 00:06:38,200 IN GEORGIA BY THEIR IMMUNOLOGY 189 00:06:38,200 --> 00:06:39,760 GROUP FOR MANY YEARS AND SHE 190 00:06:39,760 --> 00:06:42,400 DEFINITELY HAD SIGNS OF IMMUNE 191 00:06:42,400 --> 00:06:42,720 DEFICIENCY. 192 00:06:42,720 --> 00:06:44,240 HER LYMPHOCYTES AND WHITE BLOOD 193 00:06:44,240 --> 00:06:47,280 CELLS WERE VERY LOW, WITH LOW 194 00:06:47,280 --> 00:06:49,360 SPECIFICALLY HER CD 4 T-CELLS 195 00:06:49,360 --> 00:06:51,040 WHICH RESULTS IN PREDISPOSITION 196 00:06:51,040 --> 00:06:54,120 TO VIRAL INFECTIONS AND SOME 197 00:06:54,120 --> 00:06:55,400 BACTERIAL INFECTIONS, SHE HAD 198 00:06:55,400 --> 00:06:57,560 GENETIC TESTING AND GENETIC 199 00:06:57,560 --> 00:06:59,520 TESTING THERE BUT YOU KNOW THERE 200 00:06:59,520 --> 00:07:01,400 HAVE BEEN POSSIBLES BUT NO CLEAR 201 00:07:01,400 --> 00:07:03,640 ANSWER FOR WHAT WAS DRIVING ALL 202 00:07:03,640 --> 00:07:04,520 OF HER PROBLEMS. 203 00:07:04,520 --> 00:07:06,720 HER CARE HAD BEEN FRACTURED, SHE 204 00:07:06,720 --> 00:07:08,000 HAD INSTABILITY IN HER HOME 205 00:07:08,000 --> 00:07:09,400 SITUATION AND IT WAS 206 00:07:09,400 --> 00:07:10,600 INTERESTING, ACTUALLY SHE CAME 207 00:07:10,600 --> 00:07:12,320 TO SEE US, SHE REACHED OUT WHEN 208 00:07:12,320 --> 00:07:13,560 SHE TURNED 18 BECAUSE SHE WAS 209 00:07:13,560 --> 00:07:14,840 NOW THE DECISION MAKER FOR HER 210 00:07:14,840 --> 00:07:16,040 MEDICAL CARE AND SHE WANTED TO 211 00:07:16,040 --> 00:07:17,800 BE MORE PROGRESSIVE AND COME UP 212 00:07:17,800 --> 00:07:18,800 WITH AN ANSWER. 213 00:07:18,800 --> 00:07:20,480 AND ALTHOUGH SHE HAD GROWN UP 214 00:07:20,480 --> 00:07:22,480 MOSTLY LIVING IN HER MOTHER'S 215 00:07:22,480 --> 00:07:24,520 HOUSE, HER GRANDMA WAS NEARBY 216 00:07:24,520 --> 00:07:26,240 AND HER GRANDMA REALLY BECAME 217 00:07:26,240 --> 00:07:28,000 HER MAIN MEDICAL SUPPORT PERSON 218 00:07:28,000 --> 00:07:28,680 OVER THE YEARS. 219 00:07:28,680 --> 00:07:31,040 SHE HAD NO FAMILY HISTORY OF 220 00:07:31,040 --> 00:07:33,200 SIMILAR ISSUES, HER MOM WAS 221 00:07:33,200 --> 00:07:35,560 DIABETIC AND LITTLE FTION KNOWN 222 00:07:35,560 --> 00:07:36,520 ABOUT HER FATHER'S MEDICAL 223 00:07:36,520 --> 00:07:36,760 HISTORY. 224 00:07:36,760 --> 00:07:38,520 SO WHETHER SHE CAME TO SEE US, I 225 00:07:38,520 --> 00:07:39,400 WILL HIGHLIGHT DIFFERENT ISSUES 226 00:07:39,400 --> 00:07:43,200 SHE HAD OVER THE NEXT FEW YEARS. 227 00:07:43,200 --> 00:07:44,160 THE DERMATOLOGISTINGS WERE 228 00:07:44,160 --> 00:07:44,840 EXTREMELY INVOLVED AND VERY 229 00:07:44,840 --> 00:07:46,760 HELPFUL OVER THE YEARS AND HER 230 00:07:46,760 --> 00:07:48,120 SKIN CONDITION WAS VERY 231 00:07:48,120 --> 00:07:49,720 DIFFICULT AND PERPLEXED ALL OF 232 00:07:49,720 --> 00:07:49,920 US. 233 00:07:49,920 --> 00:07:51,800 OT BIOPSIES AND BY PHYSICAL EXAM 234 00:07:51,800 --> 00:07:54,240 NATION, IT LOOKED MORE 235 00:07:54,240 --> 00:07:58,400 CONSISTENT WITH AN ATYPICAL 236 00:07:58,400 --> 00:08:01,680 PSORIASIS AND IMMUNE CONDITION 237 00:08:01,680 --> 00:08:02,600 OR SIMILAR [INDISCERNIBLE], SO, 238 00:08:02,600 --> 00:08:04,880 YOU KNOW OVER THE NEXT FEW 239 00:08:04,880 --> 00:08:07,680 YEARS, WE TRIED A BUNCH OF 240 00:08:07,680 --> 00:08:09,040 DIFFERENT THERAPIES TO STABILIZE 241 00:08:09,040 --> 00:08:13,200 HER SKIN DISEASE, TARGETED FOR 242 00:08:13,200 --> 00:08:14,880 PSORAISIS, AND OTHER THERAPIES 243 00:08:14,880 --> 00:08:17,120 SUCH AS REDINOIDS AS WELL AS 244 00:08:17,120 --> 00:08:19,840 TRYING SOME THERAPIES FOR MORE 245 00:08:19,840 --> 00:08:22,800 OF AN ECZEMA PRESENTATION, BUT 246 00:08:22,800 --> 00:08:24,560 YOU KNOW THESE THERAPIES WOULD 247 00:08:24,560 --> 00:08:26,120 MAKE WORK A LITTLE BIT FOR A 248 00:08:26,120 --> 00:08:28,400 COUPLE MONTHS BUT THEN HER SKIN 249 00:08:28,400 --> 00:08:29,600 WOULD COME ROARING BACK TO WHERE 250 00:08:29,600 --> 00:08:30,880 IT WAS AND KEPT PROGRESSING AND 251 00:08:30,880 --> 00:08:32,600 SOME OF THE MORE AGGRESSIVE 252 00:08:32,600 --> 00:08:35,800 THERAPIES, WE WERE LIMITED BY 253 00:08:35,800 --> 00:08:38,040 BECAUSE OF THE CONTROL OF VIRAL 254 00:08:38,040 --> 00:08:38,520 INFECTION AND WARTS. 255 00:08:38,520 --> 00:08:40,760 OVER THE TIME THE SKIN WORSENED 256 00:08:40,760 --> 00:08:42,680 AND HER QUALITY OF LIFE WORSENED 257 00:08:42,680 --> 00:08:43,960 AS A RESULT AND SHE STOPPED 258 00:08:43,960 --> 00:08:45,120 BEING ABLE TO WORK. 259 00:08:45,120 --> 00:08:47,120 SO I HAVE A FEW PICTURES HERE 260 00:08:47,120 --> 00:08:48,760 AND YOU CAN SEE, YOU KNOW MOST 261 00:08:48,760 --> 00:08:51,240 OF HER SKIN WAS ACTUALLY THIS 262 00:08:51,240 --> 00:08:52,440 RED AND VERY FLAKY. 263 00:08:52,440 --> 00:08:53,840 YOU CAN SEE A LITTLE BIT OF 264 00:08:53,840 --> 00:08:55,600 FLAKE IN THESE AREAS, CAN YOU 265 00:08:55,600 --> 00:08:58,480 SEE BEHIND HER KNEES, THE SMALL 266 00:08:58,480 --> 00:09:00,400 MATCHES OF NORMAL SKIN AND YOU 267 00:09:00,400 --> 00:09:02,440 KNOW, IT WAS EXTREMELY STRIKING 268 00:09:02,440 --> 00:09:04,160 HOW FLAKY HER SKIN WAS. 269 00:09:04,160 --> 00:09:06,800 AND IT REALLY BEGAN TO INTERFERE 270 00:09:06,800 --> 00:09:08,360 WITH HER ABILITY TO DO ANYTHING 271 00:09:08,360 --> 00:09:09,320 WHEN SHE WAS AT HOME. 272 00:09:09,320 --> 00:09:11,000 SHE WOULD WALK DOWN THE HALLWAYS 273 00:09:11,000 --> 00:09:14,720 AT NIH AND WOULD BE THIS PATH OF 274 00:09:14,720 --> 00:09:18,400 SKIN FLAKES LEFT BEHIND. 275 00:09:18,400 --> 00:09:20,200 HER INFECTIONS WERE ALSO 276 00:09:20,200 --> 00:09:20,640 DIFFICULT TO CONTROL. 277 00:09:20,640 --> 00:09:22,520 SO SHE WAS HAVING A LOT OF 278 00:09:22,520 --> 00:09:24,800 TROUBLE WITH WORSENING OF HER 279 00:09:24,800 --> 00:09:29,320 HPV, THE WARDS THAT WERE CAUSING 280 00:09:29,320 --> 00:09:31,200 VULVAR AND PERIANNAL DISEASE AS 281 00:09:31,200 --> 00:09:32,040 WELL AS ABNORMAL APPLIED SMEARS 282 00:09:32,040 --> 00:09:34,400 AND WE WERE CONCERNED WHETHER 283 00:09:34,400 --> 00:09:37,920 THIS WOULD BE PROGRESSING TO AN 284 00:09:37,920 --> 00:09:39,200 HPC RELATED CANCER, SHE ALSO HAD 285 00:09:39,200 --> 00:09:40,800 VIRUSES THAT MANY OF US GET AND 286 00:09:40,800 --> 00:09:42,720 OUR BODY CONTROLS EVEN THOAR 287 00:09:42,720 --> 00:09:44,960 THEY'RE LATENTLY IN OUR BODIES 288 00:09:44,960 --> 00:09:47,360 SUCH AS EBV, THE EPSTEIN BAR I 289 00:09:47,360 --> 00:09:50,320 HAVEEROUS THAT CAN CAUSE MONOBUT 290 00:09:50,320 --> 00:09:51,800 AWLSZ ALSO WITH A POOR IMMUNE 291 00:09:51,800 --> 00:09:54,120 SYSTEM CAN LEAD TO LYMPHOMAS, 292 00:09:54,120 --> 00:09:56,040 AND BECAME JC VIRUSES, SHE HAD 293 00:09:56,040 --> 00:09:57,800 LUNG NODULES WHILE WE WERE 294 00:09:57,800 --> 00:09:59,880 SEEING HER THAT WERE UNCLEAR IF 295 00:09:59,880 --> 00:10:00,480 THEY WERE INFECTIOUS. 296 00:10:00,480 --> 00:10:02,480 SHE WAS ALSO FOLLOWED BY 297 00:10:02,480 --> 00:10:04,200 PSYCHIATRY AND NEUROLOGY, SHE 298 00:10:04,200 --> 00:10:08,320 HAD AN ACUTE EPISODE OF MANIA, 299 00:10:08,320 --> 00:10:09,320 THE SUMMER 2018 SX HEAT THEN 300 00:10:09,320 --> 00:10:12,440 DEPRESSION AND THAT LED TO A 301 00:10:12,440 --> 00:10:14,160 DIAGNOSIS OF BIPOLAR DISORDER 302 00:10:14,160 --> 00:10:16,320 AND HER SKIN WAS EXTRAORDINARILY 303 00:10:16,320 --> 00:10:17,520 PAINFUL WHEN THE TIME WENT ON 304 00:10:17,520 --> 00:10:18,920 AND THE PAIN SERVICE WAS 305 00:10:18,920 --> 00:10:20,200 INVOLVED SO WHEN THIS PATIENT 306 00:10:20,200 --> 00:10:21,520 CAME TO US, WE REALLY WANT TO 307 00:10:21,520 --> 00:10:24,080 KNOW WHAT IS HER DIAGNOSIS. 308 00:10:24,080 --> 00:10:25,600 YOU KNOW IT'S 1 THING TO LIST 309 00:10:25,600 --> 00:10:27,800 HER SYMPTOMS BECAUSE IF WE CAN 310 00:10:27,800 --> 00:10:29,000 HAVE A SPECIFIC ANSWER THAT 311 00:10:29,000 --> 00:10:31,000 WOULD HELP US TO NOT ONLY GUIDE 312 00:10:31,000 --> 00:10:32,760 THERAPY SOME BUT TO THINK ABOUT 313 00:10:32,760 --> 00:10:35,360 PATIENTS THAT SHARED A SIMILAR 314 00:10:35,360 --> 00:10:36,680 DIAGNOSIS BUT UNFORTUNATELY WE 315 00:10:36,680 --> 00:10:38,160 WERE NOT SUCCESSFUL, BUT STILL 316 00:10:38,160 --> 00:10:39,640 NOT SUCCESSFUL FIGURING OUT WHAT 317 00:10:39,640 --> 00:10:41,000 THE SPECIFIC DIAGNOSIS WAS. 318 00:10:41,000 --> 00:10:42,760 WE DID WHOLE EXOME SEQUENCES TO 319 00:10:42,760 --> 00:10:44,440 LOOK FOR A GENETIC DIAGNOSIS AND 320 00:10:44,440 --> 00:10:59,000 YOU KNOW JUST LIKE ALL OF US--SO 321 00:10:59,000 --> 00:11:00,360 THEN WE REALLY, IT WAS HARHARD 322 00:11:00,360 --> 00:11:01,440 TO KNOW WHAT TO DO. 323 00:11:01,440 --> 00:11:02,520 SHE WAS GETTING WORSE. 324 00:11:02,520 --> 00:11:07,080 SHE WAS NO LONGER ABLE TO HAVE 325 00:11:07,080 --> 00:11:10,280 A--SHE FELT LIKE HER QUALITY OF 326 00:11:10,280 --> 00:11:12,160 LIFE WAS IN PERISH, SHE WAS NO 327 00:11:12,160 --> 00:11:14,800 LONGER ABLE TO WORK, HER VIRAL 328 00:11:14,800 --> 00:11:15,960 INFECTIONS WERE WORSENING, WE 329 00:11:15,960 --> 00:11:17,360 WERE REALLY CONCERNED ABOUT HER 330 00:11:17,360 --> 00:11:19,000 DEVELOPING CANCER AND BEING 331 00:11:19,000 --> 00:11:21,680 LIMITED ABOUT BEING EVEN MORE 332 00:11:21,680 --> 00:11:22,800 AGGRESSIVE WITH THE SKIN 333 00:11:22,800 --> 00:11:23,600 THERAPIES. 334 00:11:23,600 --> 00:11:25,720 AND AT THIS POINT WE HAD TRIED 335 00:11:25,720 --> 00:11:26,320 MANY DIFFERENT THERAPIES. 336 00:11:26,320 --> 00:11:27,920 SO OVER A COUPLE YEARS WE 337 00:11:27,920 --> 00:11:29,200 STARTED TALKING TO HER ABOUT THE 338 00:11:29,200 --> 00:11:31,080 POSSIBILITY OF A BONE MARROW 339 00:11:31,080 --> 00:11:31,400 TRANSPLANT. 340 00:11:31,400 --> 00:11:32,640 YOU KNOW WE SEE OTHER DISEASES 341 00:11:32,640 --> 00:11:34,800 HERE THAT HAVE TROUBLE WITH 342 00:11:34,800 --> 00:11:37,680 SKIN, LIKE, MORE FREQUENTLY 343 00:11:37,680 --> 00:11:39,200 ECZEMA WITH VIRAL INFECTIONS AND 344 00:11:39,200 --> 00:11:41,200 FOR SOME OF THESE DISEASES LIKE 345 00:11:41,200 --> 00:11:43,200 DOCK 8 DEFICIENCIES WE KNOW WE 346 00:11:43,200 --> 00:11:44,880 CAN REVERSE THIS PHENOTYPE AND 347 00:11:44,880 --> 00:11:46,320 STOP THE PROGZ OF THE VIRAL 348 00:11:46,320 --> 00:11:47,400 INFECTIONS BUT WE DIDN'T KNOW 349 00:11:47,400 --> 00:11:49,240 FOR HER AND WE WERE ALL VERY 350 00:11:49,240 --> 00:11:51,720 HONEST WITH HER ABOUT THAT, JUST 351 00:11:51,720 --> 00:11:53,120 US AS THE PRIMARY TEAM BUT ALSO 352 00:11:53,120 --> 00:11:54,800 THE TRAN PLANT GROUP AND WE 353 00:11:54,800 --> 00:11:56,800 DIDN'T KNOW, YOU KNOW WHAT WAS 354 00:11:56,800 --> 00:11:59,160 REALLY DRIVING THE SKIN DISEASE. 355 00:11:59,160 --> 00:12:03,280 SO WE KNEW GOING INTO A BONE 356 00:12:03,280 --> 00:12:04,680 MARROW TRANSPLANT, WE DIDN'T BET 357 00:12:04,680 --> 00:12:06,560 THAT THE ACTUAL RISK WAS CLEAR 358 00:12:06,560 --> 00:12:07,440 WITHOUT KNOWING THE UNDERLYING 359 00:12:07,440 --> 00:12:09,000 RISK AND COULD BE A HIGHER RISK 360 00:12:09,000 --> 00:12:10,640 WITH THAT BUT THE PATIENT CHOSE 361 00:12:10,640 --> 00:12:12,520 TO PROCEED KNOWING THAT THERE 362 00:12:12,520 --> 00:12:13,960 WERE RISKS BUT REALLY CONCERN OF 363 00:12:13,960 --> 00:12:15,360 OUR INABILITY TO COME UP WITH 364 00:12:15,360 --> 00:12:17,120 OTHER OPTIONS AND HER 365 00:12:17,120 --> 00:12:18,280 SIGNIFICANTLY WORSENING QUALITY 366 00:12:18,280 --> 00:12:18,760 OF LIFE. 367 00:12:18,760 --> 00:12:21,000 SO WITH THAT, I JUST WANT TO 368 00:12:21,000 --> 00:12:22,040 THANK--THERE ARE SO MANY PEOPLE 369 00:12:22,040 --> 00:12:23,320 IN THE DIFFERENT INSTITUTES AS 370 00:12:23,320 --> 00:12:25,160 WELL AS IN THE DIFFERENT 371 00:12:25,160 --> 00:12:26,480 CLINICAL CENTER THAT WERE 372 00:12:26,480 --> 00:12:27,520 EXTRAORDINARILY HELPFUL WITH 373 00:12:27,520 --> 00:12:29,240 THIS CHALLENGING PATIENT OVER 374 00:12:29,240 --> 00:12:32,000 THE YEARS AND SO I WILL NOW HAND 375 00:12:32,000 --> 00:12:33,120 IT OVER TO DAN CHERTOW TO TALK 376 00:12:33,120 --> 00:12:34,800 ABOUT THE NEXT STEPS IN HER 377 00:12:34,800 --> 00:12:35,280 CARE. 378 00:12:35,280 --> 00:12:39,440 >> THANK YOU SO MUCH ALEX 379 00:12:39,440 --> 00:12:40,840 >> I HAVE NO DISCLOSURES 380 00:12:40,840 --> 00:12:42,080 ISSUES THE LEARNING OBJECTIVES 381 00:12:42,080 --> 00:12:43,640 FOR MY PORTION OF THE TALK ARE 382 00:12:43,640 --> 00:12:45,680 LISTED HERE, THE FIRST IS TO 383 00:12:45,680 --> 00:12:47,120 REVIEW THE PATIENT'S 5 MONTH 384 00:12:47,120 --> 00:12:49,160 COURSE AT THE NIH CENTER 385 00:12:49,160 --> 00:12:51,200 FOLLOWING TRANSPLANT TO 386 00:12:51,200 --> 00:12:51,720 SUMMARIZE THE MULTIORGAN 387 00:12:51,720 --> 00:12:54,680 DYSFUNCTION AND FAILURE DURING 388 00:12:54,680 --> 00:12:56,240 THIS PERIOD AND THEN TO 389 00:12:56,240 --> 00:12:56,880 HIGHLIGHT EXPERIENCES OF THE 390 00:12:56,880 --> 00:13:01,400 PATIENT AND THE CARE TEAM OVER 391 00:13:01,400 --> 00:13:02,480 THAT PERIOD. 392 00:13:02,480 --> 00:13:05,320 SO ALEX NICELY DESCRIBED THE 393 00:13:05,320 --> 00:13:07,680 CASE BUT IN A SUCCINCT SUMMARY 394 00:13:07,680 --> 00:13:09,960 THIS WAS A 21 YEAR-OLD WOMAN 395 00:13:09,960 --> 00:13:12,960 WITH A PRIMARY UNKNOWN IMMUNE O 396 00:13:12,960 --> 00:13:15,160 DEFICIENCY, CHARACTERIZED BY 397 00:13:15,160 --> 00:13:18,480 IDIO PATHIC CD4 LYMPHPENIA WHO 398 00:13:18,480 --> 00:13:27,400 HAD THIS GENERALIZED 399 00:13:27,400 --> 00:13:29,120 PSORIATIC RASH, GENITAL AND 400 00:13:29,120 --> 00:13:35,920 ANNAL WARTS AND CUTEAINIOUS 401 00:13:35,920 --> 00:13:39,920 CANDIDDIASIS AND ALOPECIA 402 00:13:39,920 --> 00:13:42,240 TOTALIS, AND BRONCH ECTOMYOSIN 403 00:13:42,240 --> 00:13:44,480 ACEIS AND ADRENAL INSUFFICIENCY 404 00:13:44,480 --> 00:13:46,360 AND BIPOLAR DISORDER. 405 00:13:46,360 --> 00:13:50,480 THIS IS A PICTURE OF HER TIME AT 406 00:13:50,480 --> 00:13:54,640 THE NIH CLIN CAM CENTER, 407 00:13:54,640 --> 00:13:56,960 FOLLOWING ADMISSION SHE 408 00:13:56,960 --> 00:13:57,920 UNDERWENT CHEMEE THERAPY 409 00:13:57,920 --> 00:14:00,120 CONDITIONING IN ADVANCE OF AND 410 00:14:00,120 --> 00:14:01,280 PREPARATION FOR HER TRANSPLANT 411 00:14:01,280 --> 00:14:03,960 THAT WAS SCHEDULED SHORTLY 412 00:14:03,960 --> 00:14:04,280 THEREAFTER. 413 00:14:04,280 --> 00:14:07,120 WITHIN 3 DAYS OR ON THE EIGHTH 414 00:14:07,120 --> 00:14:09,520 OF JANUARY WHILE STILL ON THE 415 00:14:09,520 --> 00:14:10,920 MEDICAL FLOORS, THE PATIENT HAD 416 00:14:10,920 --> 00:14:13,160 A CLINICAL EVENT THAT RESULTED 417 00:14:13,160 --> 00:14:15,520 IN HER BEING ADMITTED TO THE 418 00:14:15,520 --> 00:14:16,920 CLINICAL CENTER ICU. 419 00:14:16,920 --> 00:14:20,280 AND THAT EVENT WAS CHARACTERIZED 420 00:14:20,280 --> 00:14:21,760 BY RESPIRATORY FAIL AND YOU ARE 421 00:14:21,760 --> 00:14:24,680 SHOCK AND AFTER OUR INITIAL 422 00:14:24,680 --> 00:14:25,320 EVALUATION, THE UNDERLYING 423 00:14:25,320 --> 00:14:29,600 DRIVER OF THAT WAS DETERMINED TO 424 00:14:29,600 --> 00:14:31,400 BE BILATERAL PULL MONITORARY 425 00:14:31,400 --> 00:14:33,400 EMBOL I THAT HAD PRESENTED WHILE 426 00:14:33,400 --> 00:14:34,400 SHE WAS ON THE FLOOR. 427 00:14:34,400 --> 00:14:38,520 SHE HAD A DEGREE OF RECOVERY 428 00:14:38,520 --> 00:14:40,720 FROM THAT, ALTHOUGH WAS STILL 429 00:14:40,720 --> 00:14:44,040 QUITE ILL AND ABOUT A WEEK LATER 430 00:14:44,040 --> 00:14:46,920 ON THE 16th OF JANUARY 431 00:14:46,920 --> 00:14:48,320 FOLLOWING HER CONDITIONING, SHE 432 00:14:48,320 --> 00:14:50,120 DID HAVE HER TRANSPLANT. 433 00:14:50,120 --> 00:14:54,120 YOU CAN SEE THERE THAT FROM 434 00:14:54,120 --> 00:14:55,760 JANUARY 16th, TILL THE END OF 435 00:14:55,760 --> 00:14:58,960 MAY THAT SHE HAD A NUMBER OF 436 00:14:58,960 --> 00:14:59,840 EXTENSIVE POST TRANSPLANT 437 00:14:59,840 --> 00:15:01,880 COMPLICATIONS WHICH I WILL 438 00:15:01,880 --> 00:15:04,720 SUMMARIZE IN MY SUBSEQUENT 439 00:15:04,720 --> 00:15:05,040 SLIDES. 440 00:15:05,040 --> 00:15:08,360 NEEDLESS TO SAY, SHE WAS IN THE 441 00:15:08,360 --> 00:15:09,440 INTENSIVE CARE UNIT FOR MOST OF 442 00:15:09,440 --> 00:15:10,640 THIS TIME. 443 00:15:10,640 --> 00:15:12,120 SHE DID HAVE BRIEF PERIODS WHERE 444 00:15:12,120 --> 00:15:13,640 SHE WAS ABLE TO RECOVER MOST OF 445 00:15:13,640 --> 00:15:15,720 YOU THAT SHE COULD GET BACK TO 446 00:15:15,720 --> 00:15:17,280 THE MEDICAL FLOORS BUT THE LARGE 447 00:15:17,280 --> 00:15:19,200 PORTION OF THIS TIME WAS SPENT 448 00:15:19,200 --> 00:15:22,680 IN THE INTENSIVE CARE UNIT AT 449 00:15:22,680 --> 00:15:23,480 THE CLINICAL CENTER. 450 00:15:23,480 --> 00:15:24,960 A COUPLE POINTS ON THIS SLIDE TO 451 00:15:24,960 --> 00:15:27,360 NOTE ARE THAT SHE HAD A BONE 452 00:15:27,360 --> 00:15:42,240 MARROW BIOPSY ON MAY EIGHTH. 453 00:15:42,240 --> 00:15:47,480 AND DEGREE OF LEUKOPENIA, THAT 454 00:15:47,480 --> 00:15:49,000 HER TRANSPLANT HAD INGRAFTED, 455 00:15:49,000 --> 00:15:53,000 SHE HAD GREATER THAN 90% DONOR 456 00:15:53,000 --> 00:15:55,320 ON HER CHIMER ACE, SO IT'S 457 00:15:55,320 --> 00:15:57,600 IMPORTANT TO NOTE THAT HER 458 00:15:57,600 --> 00:16:01,400 TRANSPLANT AT LEAST TO SOME 459 00:16:01,400 --> 00:16:02,120 DEGREE HAD INGRAFTED. 460 00:16:02,120 --> 00:16:03,840 GIVEN THE SITUATION WITH THE 461 00:16:03,840 --> 00:16:06,600 PATIENT AND ALSO THE IMPACT ON 462 00:16:06,600 --> 00:16:08,360 THE CARE STAFF AT THE END OF 463 00:16:08,360 --> 00:16:11,200 MAY, THERE WAS AN ANONYMOUS 464 00:16:11,200 --> 00:16:13,920 CONSULT PLACED TO THE ETHICS 465 00:16:13,920 --> 00:16:17,120 SERVICE FROM 1 OF THE STAFF IN 466 00:16:17,120 --> 00:16:17,600 THE ICU. 467 00:16:17,600 --> 00:16:20,000 SO NOW JUST BRIEFLY TO SUMMARIZE 468 00:16:20,000 --> 00:16:21,240 THE VARIOUS COMPLICATIONS THAT 469 00:16:21,240 --> 00:16:22,920 TOOK PLACE BETWEEN THE INTERVAL 470 00:16:22,920 --> 00:16:24,680 THAT I DESCRIBED THERE, THESE 471 00:16:24,680 --> 00:16:28,120 INCLUDE FROM A NEUROLOGICAL 472 00:16:28,120 --> 00:16:29,440 PERSPECTIVE, ICU DELERIUM, SHE 473 00:16:29,440 --> 00:16:31,120 OBVIOUSLY REQUIRED QUITE A BIT 474 00:16:31,120 --> 00:16:34,440 OF SEDATION AND PAIN CONTROL, 475 00:16:34,440 --> 00:16:36,880 WAS ON PROLONGED MECHANICAL 476 00:16:36,880 --> 00:16:37,680 VENTILATION AND LIKE MANY 477 00:16:37,680 --> 00:16:40,800 PATIENTS IN THE ICU DEVELOPED 478 00:16:40,800 --> 00:16:41,280 DELERIUM. 479 00:16:41,280 --> 00:16:44,880 SHE ALSO DEVELOPED CRITICAL 480 00:16:44,880 --> 00:16:47,080 ILLNESS MYOPATHY WHICH IS 481 00:16:47,080 --> 00:16:47,920 CLAIRKTIZED BY 482 00:16:47,920 --> 00:16:48,880 PRO--CHARACTERIZED BY PROFOUND 483 00:16:48,880 --> 00:16:50,240 GENERALIZED WEAKNESS AND THAT 484 00:16:50,240 --> 00:16:53,000 WAS CONFIRMED BY AN 485 00:16:53,000 --> 00:16:54,920 ELECTROMILOGRAM THAT WAS 486 00:16:54,920 --> 00:16:56,840 PERFORMED AND AN IMPORTANT PART 487 00:16:56,840 --> 00:17:00,160 OF HER HISTORY IS THAT SHE HAD 488 00:17:00,160 --> 00:17:02,320 THIS GENERALIZED PAIN WHICH WAS 489 00:17:02,320 --> 00:17:05,840 IN SOME WAYS QUITE REFRACTORY 490 00:17:05,840 --> 00:17:08,040 DESPITE EFFORTS BY OUR TEAM AND 491 00:17:08,040 --> 00:17:09,560 THE PAIN AND PALLIATIVE CARE 492 00:17:09,560 --> 00:17:11,320 TEAM WHICH WAS AN IMPORTANT 493 00:17:11,320 --> 00:17:15,200 ASPECT OF HER COURSE. 494 00:17:15,200 --> 00:17:16,480 FOR HER RESPIRATORY PERSPECTIVE. 495 00:17:16,480 --> 00:17:18,000 SHE PRESENTED INITIAL LOAMACYY 496 00:17:18,000 --> 00:17:20,440 AS I MENTIONED WITH PULL 497 00:17:20,440 --> 00:17:22,360 MONITORARY EMBOL I, SHE QUEPED 498 00:17:22,360 --> 00:17:23,160 RESPIRATORY FAIL AND YOU ARE 499 00:17:23,160 --> 00:17:29,280 WHILE SHE HAD BRIEF PERIODS OFF 500 00:17:29,280 --> 00:17:31,640 OF MECHANICAL INVENTORYALATION 501 00:17:31,640 --> 00:17:33,720 SHE ULTIMATELY ENDED UP BEING 502 00:17:33,720 --> 00:17:35,920 DEPENDENT FROM THE MIDDLE OF 503 00:17:35,920 --> 00:17:37,240 MARCH TO THE END OF MAY THEY 504 00:17:37,240 --> 00:17:40,280 MENTIONED HERE AND THAT TIME ON 505 00:17:40,280 --> 00:17:49,680 HER VENTILATOR WAS COMPLICATED 506 00:17:49,680 --> 00:17:52,320 BY BILATERAL PNEUMOTHOROUGH AND 507 00:17:52,320 --> 00:17:53,400 UNFORTUNATELY IN THESE 508 00:17:53,400 --> 00:17:59,240 PNEUMOTHOAR O CEASE, SHE 509 00:17:59,240 --> 00:18:00,520 DEVELOPED A BRONCHOPLEURALL, AND 510 00:18:00,520 --> 00:18:02,280 SO THERE WAS A PERSISTENT HOLE 511 00:18:02,280 --> 00:18:04,240 IN HER LUNGS SO WHATEVER AIRT 512 00:18:04,240 --> 00:18:07,520 CAME IN FROM THE VENTILATOR 513 00:18:07,520 --> 00:18:09,280 WOULD DRAIN DIRECTLY OUT FROM 514 00:18:09,280 --> 00:18:10,440 THOSE CHEST TUBES WHICH PRESENTS 515 00:18:10,440 --> 00:18:12,920 A PROBLEM AS FAR AS ADEQUATELY 516 00:18:12,920 --> 00:18:14,600 VENTILATING A PATIENT SO IN 517 00:18:14,600 --> 00:18:16,000 CONSULTATION WITH OUR PULL 518 00:18:16,000 --> 00:18:18,240 MONITORARY CREEINGS SHE HAD A 519 00:18:18,240 --> 00:18:19,160 PALLIATIVE PROCEDURE PERFORMED 520 00:18:19,160 --> 00:18:23,760 WHERE THEY WILL PLACE VALVES OR 521 00:18:23,760 --> 00:18:25,800 ENDOBRONCHIAL VALVES WITHIN THE 522 00:18:25,800 --> 00:18:27,240 BRONCHI WITHIN THE REGIONS OF 523 00:18:27,240 --> 00:18:28,360 THE LUNGS THAT WERE THOUGHT 524 00:18:28,360 --> 00:18:30,840 THORS CONTRIBUTE TO THAT AIR 525 00:18:30,840 --> 00:18:31,120 LEAK. 526 00:18:31,120 --> 00:18:34,080 AND IN EARLY MAY SHE HAD A 527 00:18:34,080 --> 00:18:35,880 TRACHIOST ME PERFORMED WHICH IS 528 00:18:35,880 --> 00:18:37,960 A SMALL HOLE IN THE NECK SO 529 00:18:37,960 --> 00:18:40,280 INSTEAD OF THE THE ENDOTRACHEAL 530 00:18:40,280 --> 00:18:41,480 TUBE GOING DOWN THE MOUTH AND 531 00:18:41,480 --> 00:18:42,760 BACK THE THROAT, IT WAS A POINT 532 00:18:42,760 --> 00:18:45,280 IN THE NECK THAT ALLOWS GREATER 533 00:18:45,280 --> 00:18:46,440 COMFORT, PERHAPS LESS SEDATION 534 00:18:46,440 --> 00:18:48,120 AND ALLOWS THE PATIENT TO BE A 535 00:18:48,120 --> 00:18:49,400 BIT MORE INTERACTIVE WITH THE 536 00:18:49,400 --> 00:18:54,400 CARE TEAM AND FAMILY MEMBERS. 537 00:18:54,400 --> 00:18:55,920 FROM A CARDIOVASCULAR IMPORTANCE 538 00:18:55,920 --> 00:19:01,520 AND COMPLICATIONS, SHE DEVELOPED 539 00:19:01,520 --> 00:19:03,160 PROLONGED VASO-DILLATTORY SHOCK 540 00:19:03,160 --> 00:19:05,920 AND THIS WAS--SHE WAS DEPEND END 541 00:19:05,920 --> 00:19:07,520 ON EXTRANEOUS MEDICATIONS OR 542 00:19:07,520 --> 00:19:09,360 BASAL REPRESSORS TO MAINTAIN A 543 00:19:09,360 --> 00:19:10,680 REASONABLE BLOOD PRESSURE AND 544 00:19:10,680 --> 00:19:13,840 SHE WAS ON THOSE VASOPPRESSORS 545 00:19:13,840 --> 00:19:16,480 FROM THE 19th OF APRIL TO THE 546 00:19:16,480 --> 00:19:17,520 TIME POINT THAT WE'RE TALKING 547 00:19:17,520 --> 00:19:20,200 ABOUT AT THE END OF MAY WHICH IS 548 00:19:20,200 --> 00:19:21,720 A REALLY EXTENDED PERIOD OF 549 00:19:21,720 --> 00:19:21,920 TIME. 550 00:19:21,920 --> 00:19:23,360 I WILL MENTION THERE WERE A 551 00:19:23,360 --> 00:19:26,400 NUMBER OF INFECTIONS THAT WERE 552 00:19:26,400 --> 00:19:28,520 IDENTIFIED AND TREATED BUT 553 00:19:28,520 --> 00:19:29,560 ULTIMATELY THE UNDERLYING 554 00:19:29,560 --> 00:19:32,480 ETIOLOGY OF THIS VASOPPRESSOR 555 00:19:32,480 --> 00:19:33,080 DEPENDENT SHOCK WAS NOT 556 00:19:33,080 --> 00:19:34,720 SOMETHING WE WERE ABLE TO 557 00:19:34,720 --> 00:19:35,880 IDENTIFY OR REVERSE IN THE 558 00:19:35,880 --> 00:19:38,280 PERIOD OF TIME THAT SHE WAS WITH 559 00:19:38,280 --> 00:19:39,000 US. 560 00:19:39,000 --> 00:19:45,800 FROM A RENAL PERSPECTIVE, SHE 561 00:19:45,800 --> 00:19:48,120 DEVELOPED MULTIFACTORIAL AND 562 00:19:48,120 --> 00:19:49,680 ANURIC RENAL FAILURE THAT 563 00:19:49,680 --> 00:19:51,040 REQUIRED REPLACEMENT THERAPY AND 564 00:19:51,040 --> 00:19:53,720 THAT BEGAN TOWARDS THE END OF 565 00:19:53,720 --> 00:19:54,400 MARCH. 566 00:19:54,400 --> 00:19:56,160 FROM A GASTROINTESTINAL 567 00:19:56,160 --> 00:19:57,920 PERSPECTIVE, SHE HAD POOR 568 00:19:57,920 --> 00:20:03,640 NUTRITION AND THIS WAS DESPITE 569 00:20:03,640 --> 00:20:06,720 EFFORTS AT INTERERAL FEEDING AND 570 00:20:06,720 --> 00:20:08,480 TUBE FEEDING VIA TOTAL TPN AND 571 00:20:08,480 --> 00:20:09,920 PART OF THE CHALLENGE THERE IS 572 00:20:09,920 --> 00:20:13,240 THAT OFTEN IN THE ICU BECAUSE OF 573 00:20:13,240 --> 00:20:14,280 VARIOUS COMPLICATIONS, THE 574 00:20:14,280 --> 00:20:15,280 FEEDING HAS TO BE INTERRUPTED 575 00:20:15,280 --> 00:20:17,120 AND YOU WILL SEE THAT IN THE 576 00:20:17,120 --> 00:20:21,480 SETTING OF THE TOTAL PARENTAL 577 00:20:21,480 --> 00:20:22,280 NUTRITION, SHE DEVELOPED A 578 00:20:22,280 --> 00:20:23,920 NUMBER OF BLOOD STREAM 579 00:20:23,920 --> 00:20:26,600 INFECTIONS WITH BACTERIA AND 580 00:20:26,600 --> 00:20:29,400 ALSO WITH FUNGUS CANDIDA, ALSO 581 00:20:29,400 --> 00:20:32,160 FROM A GI PERSPECTIVE SHE HAD 582 00:20:32,160 --> 00:20:33,760 PROBLEMS WITH GASTROINTESTINAL 583 00:20:33,760 --> 00:20:35,400 BLEEDING THAT WAS TRANSFUSION 584 00:20:35,400 --> 00:20:37,360 DEPENDENT AND THEN SHE GEPPED A 585 00:20:37,360 --> 00:20:42,000 LARGE VOLUME OF DIARRHEA WHICH 586 00:20:42,000 --> 00:20:50,080 WAS FOUND TO HAVE NOROVIRUS 587 00:20:50,080 --> 00:20:51,480 POSITIVE--THE DIARRHEA WAS A 588 00:20:51,480 --> 00:20:53,440 SIGNIFICANT PROBLEM FOR HER. 589 00:20:53,440 --> 00:20:55,480 I MENTIONED FROM AN INFECTIOUS 590 00:20:55,480 --> 00:20:57,720 DISEASES POINT OF VIEW, THAT SHE 591 00:20:57,720 --> 00:21:00,480 HAD MULTIPLE INFECTIONS ON THE 592 00:21:00,480 --> 00:21:02,320 BACTERIAL SIDE, AND SHE 593 00:21:02,320 --> 00:21:07,440 DEVELOPED A MULTIDRUG RESISTANT 594 00:21:07,440 --> 00:21:12,360 PSEUDOMOANIS PNEUMONIA, SHE HAD 595 00:21:12,360 --> 00:21:14,440 BACTERIA REAMIAS WITH STAFF 596 00:21:14,440 --> 00:21:18,200 AURUOUS AND BACTERIUM WHICH WAS 597 00:21:18,200 --> 00:21:21,640 IS USUALLY A SKIN COLONY BUT 598 00:21:21,640 --> 00:21:23,720 BECAUSE OF HER ONCOLOGY, SHE 599 00:21:23,720 --> 00:21:24,760 DEVELOPED THESE, MORE 600 00:21:24,760 --> 00:21:29,040 IMPORTANTLY SHE HAD VIRAL 601 00:21:29,040 --> 00:21:31,880 INFECTIONS, INCLUDING ADEN O 602 00:21:31,880 --> 00:21:33,960 VIRUS VIREMIA, FOR 60 DAYS WHICH 603 00:21:33,960 --> 00:21:36,040 IS IN GENERAL NOT THAT SERIOUS 604 00:21:36,040 --> 00:21:38,120 BUT IN HER IT WAS DIFFICULT TO 605 00:21:38,120 --> 00:21:41,080 CONTROL AND CAN RESULT IN AN 606 00:21:41,080 --> 00:21:45,480 ORGAN DYSFUNCTION DUE TO HER 607 00:21:45,480 --> 00:21:46,760 IMMUNE SUPPRESSED STATE POST 608 00:21:46,760 --> 00:21:48,240 TRANSPLANT. 609 00:21:48,240 --> 00:21:51,080 SHE ALSO DEVELOPED BK VIRUS 610 00:21:51,080 --> 00:21:52,320 VIREAMIA AND EVIDENCE OF 611 00:21:52,320 --> 00:21:53,880 NIEWMONNITEIS AND AS I MENTIONED 612 00:21:53,880 --> 00:21:56,920 SHE DEVELOPED THE 613 00:21:56,920 --> 00:21:57,400 [INDISCERNIBLE]. 614 00:21:57,400 --> 00:21:58,720 FROM A HEMEAT O LOGIC 615 00:21:58,720 --> 00:22:00,760 PERSPECTIVE WE HAD PROBLEMS BOTH 616 00:22:00,760 --> 00:22:02,200 WITH CLOTTING BUT ALSO WITH 617 00:22:02,200 --> 00:22:02,680 BLOODING. 618 00:22:02,680 --> 00:22:05,480 I HAD MENTIONED THE BILATERAL 619 00:22:05,480 --> 00:22:07,320 PULL MONITORARY EMBOL I, THOSE 620 00:22:07,320 --> 00:22:10,760 WERE DEDRIVED FROM MULTIPLE DVT 621 00:22:10,760 --> 00:22:13,920 PRESENT AND FOLLOWED OVER HER 622 00:22:13,920 --> 00:22:15,200 COURSE. 623 00:22:15,200 --> 00:22:16,280 AND UNFORTUNATELY SHE WAS 624 00:22:16,280 --> 00:22:18,560 INTOLERANT TO THE REQUIRED 625 00:22:18,560 --> 00:22:19,280 ANTICOAGULATION FOR THE 626 00:22:19,280 --> 00:22:22,320 THROMBOSIS BECAUSE SHE HAD 627 00:22:22,320 --> 00:22:23,560 EPISODES OF GASTROINTESTINAL 628 00:22:23,560 --> 00:22:25,400 BLEEDING I MENTIONED AND THEN 629 00:22:25,400 --> 00:22:32,680 SHE ALSO HAD A SINGLE EPISODE OF 630 00:22:32,680 --> 00:22:33,800 SPONTANEOUS BLEEDING TO HER 631 00:22:33,800 --> 00:22:34,040 CAVITY. 632 00:22:34,040 --> 00:22:36,720 SO JUST A COUPLE NOTES BEFORE I 633 00:22:36,720 --> 00:22:37,800 TRANSITION OFF OF THIS PORTION, 634 00:22:37,800 --> 00:22:40,000 THIS IS A QUOTE FROM THE PAIN 635 00:22:40,000 --> 00:22:44,480 AND PALLIATIVE CARE SERVICE FROM 636 00:22:44,480 --> 00:22:45,600 THEIR NOTE ON MARCH 28th THAT 637 00:22:45,600 --> 00:22:50,120 I WANT TO READ THE PATIENT I 638 00:22:50,120 --> 00:22:50,920 WANT TO READ. 639 00:22:50,920 --> 00:22:52,480 THE PATIENT REMAINS VERY 640 00:22:52,480 --> 00:22:53,480 UNCOMFORTABLE MUCH OF THE TIME. 641 00:22:53,480 --> 00:22:56,360 IF SHE IS NOT MOVING AND HER 642 00:22:56,360 --> 00:22:57,480 GRANDMOTHER IS HOLDING HER HAND, 643 00:22:57,480 --> 00:22:59,960 SHE IS OKAY, BUT WITH ANY 644 00:22:59,960 --> 00:23:02,040 MOVEMENT, ANY WOUND CARE, SHE 645 00:23:02,040 --> 00:23:02,520 HAS SEVERE PAIN. 646 00:23:02,520 --> 00:23:04,680 AND OF COURSE OUR NURSES IN THE 647 00:23:04,680 --> 00:23:07,920 ICU ARE THE 1S THAT ARE AT HER 648 00:23:07,920 --> 00:23:10,520 BEDSIDE 24 HOURS A DAY AND THAT 649 00:23:10,520 --> 00:23:12,680 WERE IMPACTED MOST DIRECTLY BY 650 00:23:12,680 --> 00:23:15,920 HER PERSONAL--THE PATIENT'S 651 00:23:15,920 --> 00:23:16,200 EXPERIENCES. 652 00:23:16,200 --> 00:23:17,560 AND THEN ANOTHER IMPORTANT NOTE 653 00:23:17,560 --> 00:23:21,800 CAME FROM THE PSYCHIATRY TEAM AT 654 00:23:21,800 --> 00:23:23,000 THE END OF MAY. 655 00:23:23,000 --> 00:23:24,880 HER COMMENTS WERE THIS: MEDICAL 656 00:23:24,880 --> 00:23:25,760 TEAMS KNOW CONTINUE TO 657 00:23:25,760 --> 00:23:26,960 COMMUNICATE WITH THE PATIENT 658 00:23:26,960 --> 00:23:28,800 REGARDING HER MEDICAL CONDITION. 659 00:23:28,800 --> 00:23:31,040 PROVIDING INFORMATION ABOUT THE 660 00:23:31,040 --> 00:23:32,320 SERIOUS MEDICAL STATE. 661 00:23:32,320 --> 00:23:33,640 IT'S DIFFICULT TO INTERPRET HER 662 00:23:33,640 --> 00:23:35,520 REACTION TO THESE DISCUSSIONS AS 663 00:23:35,520 --> 00:23:38,040 SHE IS NONVERBAL AND CAN ONLY 664 00:23:38,040 --> 00:23:41,120 COMMUNICATE AT PRESENT WITH 665 00:23:41,120 --> 00:23:41,720 GUESTURES. 666 00:23:41,720 --> 00:23:45,800 SO IN SUMMARY, THIS CHALLENGING 667 00:23:45,800 --> 00:23:47,600 PATIENT HAD SUSTAINED CRITICAL 668 00:23:47,600 --> 00:23:49,720 ILLNESS AND MULTIORGAN FAILURE. 669 00:23:49,720 --> 00:23:54,800 IN THE END AT THIS STAGE, WE 670 00:23:54,800 --> 00:24:00,280 WERE TRULY UNABLE TO IDENTIFY A 671 00:24:00,280 --> 00:24:01,560 REVERSIBLE CAUSE DESPITE HER 672 00:24:01,560 --> 00:24:03,120 LONG ICU STATE, SHE HAD 673 00:24:03,120 --> 00:24:05,520 SUFFERING SHE WAS EXPERIENCING 674 00:24:05,520 --> 00:24:07,920 AND THE STAFF HAD EXPRESSED AND 675 00:24:07,920 --> 00:24:09,560 WAS EXPRESSING MORAL DISTRESS 676 00:24:09,560 --> 00:24:11,800 THAT ULTIMATELY CONTRIBUTED TO 677 00:24:11,800 --> 00:24:12,240 THE ETHICS CONSULT. 678 00:24:12,240 --> 00:24:21,600 AND WITH THAT I WILL STOP 679 00:24:21,600 --> 00:24:23,320 SHARING AND I WILL HAND IT OVER 680 00:24:23,320 --> 00:24:24,120 TO DOUG. 681 00:24:24,120 --> 00:24:24,880 >> OKAY, GREAT. 682 00:24:24,880 --> 00:24:27,000 THANKS SO MUCH, CAN FOLKS HEAR 683 00:24:27,000 --> 00:24:36,120 ME AND SEE MY SCREEN? 684 00:24:36,120 --> 00:24:36,360 >> YES. 685 00:24:36,360 --> 00:24:37,760 >> THANKS TO THE DOCTORS FOR 686 00:24:37,760 --> 00:24:38,840 THAT DESCRIPTION AND THANK YOU 687 00:24:38,840 --> 00:24:41,040 TO DAVE FOR INVITING ME TODAY. 688 00:24:41,040 --> 00:24:42,920 OBVIOUSLY THIS IS AN INCREDIBLE 689 00:24:42,920 --> 00:24:46,120 LOAMACYY HARD CASE, SO MY 690 00:24:46,120 --> 00:24:48,200 COMMENTS COME WITH HUMILITY AND 691 00:24:48,200 --> 00:24:50,480 ALSO REALLY MINDFUL THAT I OF 692 00:24:50,480 --> 00:24:53,880 COURSE DON'T KNOW ALL OF THE 693 00:24:53,880 --> 00:24:54,320 DETAILS OF THE CASE. 694 00:24:54,320 --> 00:24:57,080 SO JUST BY WAY OF DISCLOSURES, 695 00:24:57,080 --> 00:24:58,920 THESE ARE MY FINANCIAL 696 00:24:58,920 --> 00:24:59,720 DISCLOSURES, NONE OF WHICH 697 00:24:59,720 --> 00:25:01,640 PRESENT WITH WHAT I WILL BE 698 00:25:01,640 --> 00:25:02,680 PRESENTING. 699 00:25:02,680 --> 00:25:06,400 SO DAVID ASKED ME TO TOUCH ON 4 700 00:25:06,400 --> 00:25:08,200 MAIN AREAS AND IN THE NEXT 15 701 00:25:08,200 --> 00:25:09,880 MINUTES OR SO I WOULD LIKE TO 702 00:25:09,880 --> 00:25:10,720 PROVIDE THOUGHTS ABOUT THESE. 703 00:25:10,720 --> 00:25:12,440 I WILL TALK ABOUT HOW DO WE 704 00:25:12,440 --> 00:25:14,440 DETERMINE WHEN THE POTENTIAL 705 00:25:14,440 --> 00:25:15,920 BENEFITS OF INTENSIVE CARE 706 00:25:15,920 --> 00:25:16,880 JUSTIFY THE BURDENS, WE WILL 707 00:25:16,880 --> 00:25:18,640 TALK THEN ABOUT HOW DO WE 708 00:25:18,640 --> 00:25:20,480 EFFECTIVELY COMMUNICATE ON 709 00:25:20,480 --> 00:25:21,960 UNKNOWN AND PRESUMED VERY LOW 710 00:25:21,960 --> 00:25:23,320 BAH NON0 CHANCE OF RECOVERY. 711 00:25:23,320 --> 00:25:25,800 THEN I WILL TALK ABOUT HOW LOW A 712 00:25:25,800 --> 00:25:26,720 CHANCE OF MEANINGFUL RECOVERY IS 713 00:25:26,720 --> 00:25:28,120 TOO LOW AND THEN FINALLY, I WILL 714 00:25:28,120 --> 00:25:31,200 MAKE JUST A COUPLE POINTS ABOUT 715 00:25:31,200 --> 00:25:34,880 THE IMPORTANCE OF ATTENDING TO 716 00:25:34,880 --> 00:25:36,120 CLINICIANS MORAL DISTRESS AND A 717 00:25:36,120 --> 00:25:39,040 CAVEAT IS THAT EACH OF THESE 718 00:25:39,040 --> 00:25:40,240 TOPICS LENDS ITSELF TO AN HOUR 719 00:25:40,240 --> 00:25:42,440 OR MUCH LONGER AND SO MY 720 00:25:42,440 --> 00:25:43,360 COMMENTS WILL HOPEFULLY JUST 721 00:25:43,360 --> 00:25:46,840 SERVE AS A LAUNCHING OFF POINT 722 00:25:46,840 --> 00:25:47,280 FOR THE DISCUSSION. 723 00:25:47,280 --> 00:25:48,640 ALL RIGHT, SO ON THE FIRST 724 00:25:48,640 --> 00:25:51,080 QUESTION OF HOW DO WE DETERMINE 725 00:25:51,080 --> 00:25:55,760 WHEN THE POTENTIAL BENEFITS OF 726 00:25:55,760 --> 00:26:01,080 INTENSIVE CARE JUSTIFY THE 727 00:26:01,080 --> 00:26:01,320 BURDENS? 728 00:26:01,320 --> 00:26:02,600 YOU KNOW 1 SOURCE FOR GUIDANCE 729 00:26:02,600 --> 00:26:03,720 ON THIS IS POLICY STATEMENTS 730 00:26:03,720 --> 00:26:08,600 FROM PROFESSIONAL SOCIETIES AND 731 00:26:08,600 --> 00:26:09,920 IN 2016, THE SOCIETY FOR 732 00:26:09,920 --> 00:26:11,840 CRITICAL CARE IN A, IT S, DID 733 00:26:11,840 --> 00:26:13,440 RELEASE A POLICY ON THIS 734 00:26:13,440 --> 00:26:14,280 QUESTION, AND THEIR 735 00:26:14,280 --> 00:26:15,800 RECOMMENDATION WAS IN THE VAST 736 00:26:15,800 --> 00:26:18,080 MAJORITY OF CASES AND THERE'S A 737 00:26:18,080 --> 00:26:19,200 CAVEAT THERE, CLINICIANS SHOULD 738 00:26:19,200 --> 00:26:21,280 ENGAGE PATIENTS AND SURROGATES 739 00:26:21,280 --> 00:26:22,800 IN A PROCESS OF SHARED DECISION 740 00:26:22,800 --> 00:26:24,880 MAKING TO ANSWER THIS QUESTION 741 00:26:24,880 --> 00:26:26,640 ABOUT ACCEPTABLE BURDEN BENEFIT 742 00:26:26,640 --> 00:26:26,880 RATIOS. 743 00:26:26,880 --> 00:26:27,920 AND I THINK--YOU KNOW JUST FOR 744 00:26:27,920 --> 00:26:30,000 THIS AUDIENCE, I THINK IT'S 745 00:26:30,000 --> 00:26:30,840 WORTH SPENDING TIME TALKING 746 00:26:30,840 --> 00:26:33,760 ABOUT WHAT WE NEED BY SHARED 747 00:26:33,760 --> 00:26:34,520 DECISION MAKING, SHARED DECISION 748 00:26:34,520 --> 00:26:36,360 MAKING IS A PROCESS OF 749 00:26:36,360 --> 00:26:38,120 COMMUNICATION IN WHICH PATIENTS 750 00:26:38,120 --> 00:26:40,360 AND CLINICIANS WORK TOGETHER TO 751 00:26:40,360 --> 00:26:41,360 MAKE HEALTHCARE DECISIONS, TAKE 752 00:26:41,360 --> 00:26:43,320 INTO ACCOUNT BOTH THE MEDICAL 753 00:26:43,320 --> 00:26:45,680 FACTS AS WELL AS WHAT'S KNOWN 754 00:26:45,680 --> 00:26:48,120 ABOUT THE PATIENT'S VALUES, 755 00:26:48,120 --> 00:26:52,880 GOALS AND PREFERENCES. 756 00:26:52,880 --> 00:26:53,240 SORRY. 757 00:26:53,240 --> 00:26:55,480 FROM AN ETHICAL STANDPOINT, THE 758 00:26:55,480 --> 00:26:56,840 ARGUMENT IS THAT WE MANIFEST 759 00:26:56,840 --> 00:26:58,600 RESPECT FOR THE PATIENT AS A 760 00:26:58,600 --> 00:27:00,560 PERSON BY ALLOWING PATIENTS OR 761 00:27:00,560 --> 00:27:02,320 THEIR SURROGATES TO BE INVOLVED 762 00:27:02,320 --> 00:27:04,320 IN CHOOSING AMONG AVAILABLE AND 763 00:27:04,320 --> 00:27:05,040 REASONABLE TREATMENT OPTIONS 764 00:27:05,040 --> 00:27:07,680 WHEN THERE ARE DIFFERENT RISKS 765 00:27:07,680 --> 00:27:08,480 AND BENEFITS OF THOSE OPTIONS 766 00:27:08,480 --> 00:27:09,720 AND THE OTHER THING I THINK IS 767 00:27:09,720 --> 00:27:11,520 REALLY IMPORTANT HERE IS THAT 768 00:27:11,520 --> 00:27:14,440 THIS DOCUMENT CONTAINED A CAVEAT 769 00:27:14,440 --> 00:27:17,960 THAT THE POLICY STATEMENT THAT 770 00:27:17,960 --> 00:27:20,080 PATIENTS OR SURROGATES ARE 771 00:27:20,080 --> 00:27:21,280 TRUSTING AND THERE MAY BE 772 00:27:21,280 --> 00:27:22,520 CIRCUMSTANCES WHERE THE 773 00:27:22,520 --> 00:27:23,600 CLINICIAN SHOULD REFUSE TO 774 00:27:23,600 --> 00:27:24,520 PROVIDE THOSE TREATMENTS AND WE 775 00:27:24,520 --> 00:27:26,160 WILL TALK ABOUT THAT CAVEAT 776 00:27:26,160 --> 00:27:28,720 CARVED OUT IN A FEW MINUTES WHEN 777 00:27:28,720 --> 00:27:30,240 I ADDRESS THE THIRD QUESTION 778 00:27:30,240 --> 00:27:31,320 POSED BUT THE FIRST QUESTION ON 779 00:27:31,320 --> 00:27:33,240 THE HIGH LEVEL, I WANT TO 780 00:27:33,240 --> 00:27:34,360 REFLECT THAT WE SHOULD ALLOW 781 00:27:34,360 --> 00:27:37,320 PATIENTS OR THEIR SURROGATES IN 782 00:27:37,320 --> 00:27:39,000 GENERAL TO DETERMINE WHEN THE 783 00:27:39,000 --> 00:27:43,240 POTENTIAL BENITS OF ICU CARE 784 00:27:43,240 --> 00:27:45,440 JUSTIFY THE BURDENS. 785 00:27:45,440 --> 00:27:46,520 UNFORTUNATELY, IN REALITY WE 786 00:27:46,520 --> 00:27:48,000 OFTEN FALL SHORT OF ACHIEVING 787 00:27:48,000 --> 00:27:49,760 THIS ETHICAL GOAL OF ROBUSTLY 788 00:27:49,760 --> 00:27:50,800 INVOLVES PATIENTS AND SURROGATES 789 00:27:50,800 --> 00:27:54,320 AND SO FOR EXAMPLE, THE SCCM 790 00:27:54,320 --> 00:27:57,680 RECOMMENDS THE CONDUCT OF 791 00:27:57,680 --> 00:27:58,440 ROUTINE INTERDISCIPLINARY 792 00:27:58,440 --> 00:27:59,760 MEETINGS TO PROMOTE CARE, 793 00:27:59,760 --> 00:28:02,040 GENERALLY IN THE ICU STAY AND 794 00:28:02,040 --> 00:28:02,800 ITERATIVELY THROUGHOUT THE 795 00:28:02,800 --> 00:28:04,520 COURSE OF THE ICU STAY, BUT OVER 796 00:28:04,520 --> 00:28:06,400 THE YEARS A NUMBER OF STUDIES 797 00:28:06,400 --> 00:28:08,040 HAVE FOUND THAT LESS THAN HALF 798 00:28:08,040 --> 00:28:09,920 OF CRITICALLY ILL PATIENTS HAVE 799 00:28:09,920 --> 00:28:12,280 FAMILY MEETINGS IN THE FITTER 72 800 00:28:12,280 --> 00:28:14,280 HOURS OF ICU ADMISSION AND ALSO, 801 00:28:14,280 --> 00:28:15,880 WHEN YOU REALLY DIG DEEP INTO 802 00:28:15,880 --> 00:28:17,360 WHAT'S HAPPENING IN THESE 803 00:28:17,360 --> 00:28:18,640 MEETINGS, USING AUDIO 804 00:28:18,640 --> 00:28:20,680 RECORDINGS, MY GROUP AND OTHERS 805 00:28:20,680 --> 00:28:21,520 HAVE FOUND SERIOUS SHORT COMING 806 00:28:21,520 --> 00:28:23,960 IN THE PROCESS OF SHARED 807 00:28:23,960 --> 00:28:24,480 DECISION MAKING. 808 00:28:24,480 --> 00:28:27,520 SO FOR EXAMPLE, AMONG 250 AUDIO 809 00:28:27,520 --> 00:28:28,320 RECORDED FAMILY MEETINGS FOR 810 00:28:28,320 --> 00:28:30,240 PATIENTS AT VERY HIGH RISK OF 811 00:28:30,240 --> 00:28:31,760 DEATH AND ICUs, WE FOUND THAT 812 00:28:31,760 --> 00:28:33,360 25% OF THESE CONVERSATIONS HAVE 813 00:28:33,360 --> 00:28:34,520 NO DISCUSSION ABOUT THE 814 00:28:34,520 --> 00:28:35,520 PATIENT'S VALUES AND PREFERENCES 815 00:28:35,520 --> 00:28:37,440 AND THEN IN A SEPARATE ANALYSIS 816 00:28:37,440 --> 00:28:40,720 OF AN EVEN SICKER COHORT IN 817 00:28:40,720 --> 00:28:42,120 WHICH 72% OF THE PATIENTS DIED 818 00:28:42,120 --> 00:28:43,920 WE FOUND IN ALMOST THAFUL HALF 819 00:28:43,920 --> 00:28:46,120 OF THESE FAMILY MEETINGS, THE 820 00:28:46,120 --> 00:28:48,960 CLINICIANS DIDN'T PUT FORWARD AS 821 00:28:48,960 --> 00:28:52,120 AN OPTION TO INTENSIVE CARE A 822 00:28:52,120 --> 00:28:52,960 COMFORT-FOCUSED PLAN OF CARE BUT 823 00:28:52,960 --> 00:28:55,160 IN THE LAST COUPLE DECADES 824 00:28:55,160 --> 00:28:56,480 THERE'S BEEN IMPORTANT PROGRESS 825 00:28:56,480 --> 00:28:57,720 IN OVERCOMING THESE 826 00:28:57,720 --> 00:28:58,920 COMMUNICATION BREAK DOWNS AND IN 827 00:28:58,920 --> 00:29:01,040 PARTICULAR THERE HAVE BEEN 828 00:29:01,040 --> 00:29:01,840 INTERVENTIONS DEVELOPED TO 829 00:29:01,840 --> 00:29:04,000 PROMOTE TIMELY AND CONSISTENT 830 00:29:04,000 --> 00:29:04,920 COMMUNICATION ABOUT PATIENTS 831 00:29:04,920 --> 00:29:06,160 VALUES AND PREFERENCES, SO WE 832 00:29:06,160 --> 00:29:08,520 DON'T REALLY HAVE TIME TO DELVE 833 00:29:08,520 --> 00:29:09,560 INTO THE SPECIFICS OF ALL OF 834 00:29:09,560 --> 00:29:12,200 THEM BUT I'VE LISTED 3 STUDIES 835 00:29:12,200 --> 00:29:12,560 HERE. 836 00:29:12,560 --> 00:29:15,320 EACH OF WHICH LED TO IMPORTANT 837 00:29:15,320 --> 00:29:17,520 IMPROVEMENTS AND OUTCOMES, 1 WAS 838 00:29:17,520 --> 00:29:20,120 AN INTERVENGAL STUDY LED BY 839 00:29:20,120 --> 00:29:22,080 RANDY CURTIS THAT USED A TEAM 840 00:29:22,080 --> 00:29:23,720 SOMEBODY WHOSE ROLE WAS TO 841 00:29:23,720 --> 00:29:25,120 ORGANIZE FAMILY MEETD MEETINGS 842 00:29:25,120 --> 00:29:26,160 AND SUPPORT FAMILY MEETING 843 00:29:26,160 --> 00:29:29,640 DURING THOSE MEETINGS AND MAKING 844 00:29:29,640 --> 00:29:31,640 SURE THEY'RE HAPPENING ON AND 845 00:29:31,640 --> 00:29:33,480 CONTAIN INFORMATION AND ANOTHER 846 00:29:33,480 --> 00:29:37,600 LED BY LARRY SNYDER MAN, TO 847 00:29:37,600 --> 00:29:38,560 ACCOMPLISH RELATIVELY SIMILAR 848 00:29:38,560 --> 00:29:40,560 GOALS WITH ARGUABLILY A HIGHER 849 00:29:40,560 --> 00:29:43,000 LEVEL OF ETHICS EXPERTISE FOR 850 00:29:43,000 --> 00:29:44,000 THE VALUE CONFLICTS AND THE 851 00:29:44,000 --> 00:29:46,000 THIRD STUDY HERE IS 1 THAT I LED 852 00:29:46,000 --> 00:29:48,160 THAT WAS RATHER THAN BEING 853 00:29:48,160 --> 00:29:49,800 DELIVERED BY AN EXTERNAL 854 00:29:49,800 --> 00:29:51,680 CONSULTANT OR A WERE TEAM MEMBER 855 00:29:51,680 --> 00:29:53,880 WE TRAIN THE EXISTING ICU TEAM 856 00:29:53,880 --> 00:29:56,040 TO DELIVER A FAMILY STRUCTURED 857 00:29:56,040 --> 00:29:56,440 SUPPORT PROTOCOL. 858 00:29:56,440 --> 00:29:58,320 AND JUST TO GIVE YOU A FLAVOR OF 859 00:29:58,320 --> 00:29:59,000 WHAT THESE INTERVENTIONS LOOK 860 00:29:59,000 --> 00:30:01,160 LIKE AND I AM TALK ABOUT THE 861 00:30:01,160 --> 00:30:02,720 INTERVENTION WE DEVELOPED AND 862 00:30:02,720 --> 00:30:03,000 DEPLOYED. 863 00:30:03,000 --> 00:30:05,120 THIS WAS AS I SAID A FAMILY 864 00:30:05,120 --> 00:30:06,280 SUPPORT INTERVENTION DELIVERED 865 00:30:06,280 --> 00:30:07,520 BY THE ICU TEAM. 866 00:30:07,520 --> 00:30:09,480 WHAT WAS UNIQUE IS THAT IT GAVE 867 00:30:09,480 --> 00:30:12,720 A MUCH LARGER ROLE IN SUPPORTING 868 00:30:12,720 --> 00:30:14,800 FAMILIES TO ICU NURSES AND ALSO 869 00:30:14,800 --> 00:30:16,520 GAVE THEM A MUCH MORE 870 00:30:16,520 --> 00:30:17,920 EMPOWERMENT TO MAKE SURE THAT 871 00:30:17,920 --> 00:30:18,720 TIMELY COMMUNICATION WAS 872 00:30:18,720 --> 00:30:19,880 HAPPENING AND SO THESE NURSES 873 00:30:19,880 --> 00:30:21,320 WENT THROUGH A FAIRLY EXTENSIVE 874 00:30:21,320 --> 00:30:22,760 TRAINING TO LEARN A PARTICULAR 875 00:30:22,760 --> 00:30:24,960 TECHNIQUE OF PROVIDING DAILY 876 00:30:24,960 --> 00:30:25,680 STRUCTURED EMOTIONAL AND 877 00:30:25,680 --> 00:30:28,560 PSYCHOLOGICAL SUPPORT TO 878 00:30:28,560 --> 00:30:30,520 FAMILIES, TO SCHEDULING THESE 879 00:30:30,520 --> 00:30:31,720 FAMILY MEETINGS WITHIN 48 HOURS 880 00:30:31,720 --> 00:30:33,520 OF ENROLLMENT AND AT LEAST 881 00:30:33,520 --> 00:30:35,200 WEEKLY THEREAFTER AND ALSO 882 00:30:35,200 --> 00:30:36,720 PREPARING FAMILIES FOR EACH 883 00:30:36,720 --> 00:30:38,000 FAMILY MEETING USING WHAT'S 884 00:30:38,000 --> 00:30:39,720 CALLED A QUESTION PROMPT LIST 885 00:30:39,720 --> 00:30:41,000 AND TALKING THIS THROUGH WITH 886 00:30:41,000 --> 00:30:42,680 THEM IN ADVANCE OF THE MEETING. 887 00:30:42,680 --> 00:30:45,040 AND THIS IS A SCREEN SHOT OF 888 00:30:45,040 --> 00:30:48,120 THAT QUESTION, AND YOU WILL SEE 889 00:30:48,120 --> 00:30:49,160 THAT FAMILIES WERE ENCOURAGED TO 890 00:30:49,160 --> 00:30:50,360 WRITE DOWN IN ADVANCE AND THINK 891 00:30:50,360 --> 00:30:51,440 THROUGH WHAT ARE THE CORE 892 00:30:51,440 --> 00:30:54,120 QUESTIONS FOR THE TEAM AND THEN 893 00:30:54,120 --> 00:30:55,520 THEY WERE--WALKED THROUGH 894 00:30:55,520 --> 00:30:56,520 ESSENTIALLY QUESTIONS THAT ARE 895 00:30:56,520 --> 00:30:57,720 COMMON FOR FAMILIES AND ICU 896 00:30:57,720 --> 00:31:12,040 SETTINGS AND THIS WAS A BIT OF A 897 00:31:12,040 --> 00:31:13,320 NUDGE--AND THEN ASKING ABOUT 898 00:31:13,320 --> 00:31:14,520 WHAT TREATMENT OPTIONS ARE 899 00:31:14,520 --> 00:31:14,800 AVAILABLE. 900 00:31:14,800 --> 00:31:17,480 AND AS I SAID, THE INTERVENTION 901 00:31:17,480 --> 00:31:20,200 WAS ASSOCIATED WITH SOME 902 00:31:20,200 --> 00:31:21,280 IMPORTANT IMPROVEMENTS IN 903 00:31:21,280 --> 00:31:24,320 PATIENT AND FAMILY ELF OUTCOMES. 904 00:31:24,320 --> 00:31:28,960 SURROGATES AT 3 MONTH FOLLOW UP 905 00:31:28,960 --> 00:31:30,840 RATED OR NOTED SIGNIFICANTLY 906 00:31:30,840 --> 00:31:31,960 INCREASED RATINGS OF THE PATIENT 907 00:31:31,960 --> 00:31:33,560 AND FAMILY CENTERED HADNESS EVER 908 00:31:33,560 --> 00:31:36,040 CARE AND ALSO THE--FAMILY 909 00:31:36,040 --> 00:31:38,320 CENTEREDNESS OF CARE AND ALSO 910 00:31:38,320 --> 00:31:39,520 THE QUALITY OF CARE THEY WERE 911 00:31:39,520 --> 00:31:41,800 MAKING AND THE IT WAS A SHORTER 912 00:31:41,800 --> 00:31:42,920 DURATION OF LIFE SUPPORT AMONG 913 00:31:42,920 --> 00:31:45,480 PATIENT WHO IS DIED AS WELL AS 914 00:31:45,480 --> 00:31:46,920 DECREASED TOTAL HOSPITALIZATION 915 00:31:46,920 --> 00:31:47,280 COSTS. 916 00:31:47,280 --> 00:31:49,120 THE INTERVENTION DID NOT HAVE 917 00:31:49,120 --> 00:31:51,320 ANY EFFECT ON SYMPTOMS OF 918 00:31:51,320 --> 00:31:54,120 DEPRESSION, ANXIETY OR PTSD. 919 00:31:54,120 --> 00:31:55,720 OKAY, SO, THAT'S JUST SORT OF 920 00:31:55,720 --> 00:31:57,160 HIGH LEVEL CONVERSATION ABOUT 921 00:31:57,160 --> 00:31:58,600 ENGAGING PATIENTS AND FAMILIES 922 00:31:58,600 --> 00:32:00,360 AND DECISION MAKING AND ICUs. 923 00:32:00,360 --> 00:32:04,240 ON TO THIS NARROWER QUESTION OF 924 00:32:04,240 --> 00:32:06,120 HOW DO WE EFFECTIVELY 925 00:32:06,120 --> 00:32:08,040 COMMUNICATE AN UNKNOWN AND 926 00:32:08,040 --> 00:32:10,640 PRESUMABLY VERY LOW BUT NON0 927 00:32:10,640 --> 00:32:11,080 CHANCE OF RECOVERY. 928 00:32:11,080 --> 00:32:14,400 AND SO THIS IS AN INCREDIBLE 929 00:32:14,400 --> 00:32:15,240 LOAMACYY HARD QUESTION, THE 930 00:32:15,240 --> 00:32:17,680 ANSWER TO WHICH DOES NOT EXIST 931 00:32:17,680 --> 00:32:19,120 IMPERICALLY TO MY KNOWLEDGE BUT 932 00:32:19,120 --> 00:32:20,000 I WILL SHARE THOUGHTS. 933 00:32:20,000 --> 00:32:22,040 YOU KNOW AT THE HIGH LEVEL, I 934 00:32:22,040 --> 00:32:25,280 THINK MANY PHYSICIAN VS HAD THE 935 00:32:25,280 --> 00:32:26,160 EXPERIENCE WHERE THEY THINK 936 00:32:26,160 --> 00:32:27,880 THEY'VE DONE A GREAT JOB IN A 937 00:32:27,880 --> 00:32:29,600 MEETING WITH A FAMILY OF 938 00:32:29,600 --> 00:32:32,400 CONVEYING HOW POOR THE PATIENT'S 939 00:32:32,400 --> 00:32:34,480 PROGNOSIS IS ONLY TO LEAVE WITH 940 00:32:34,480 --> 00:32:35,680 THE FEELING THAT MAYBE THE 941 00:32:35,680 --> 00:32:36,320 FAMILY DIDN'T GET IT. 942 00:32:36,320 --> 00:32:38,720 AND I THINK THE IMPULSE MANY OF 943 00:32:38,720 --> 00:32:40,920 US HAVE IS TO ASCRIBE THE 944 00:32:40,920 --> 00:32:43,320 PROBLEM OF A THE FAILURE OF A 945 00:32:43,320 --> 00:32:44,920 FAMILY TO COMPREHEND AND 946 00:32:44,920 --> 00:32:45,560 COGNITIVELY UNDERSTAND WHAT WAS 947 00:32:45,560 --> 00:32:46,960 SAID AND THE FOLLOW ON IMPULSES 948 00:32:46,960 --> 00:32:49,040 TO SAY THE SAME THING, MAYBE 949 00:32:49,040 --> 00:32:50,920 SLOWER AND MAYBE LOUDER, LARGELY 950 00:32:50,920 --> 00:32:54,920 BECAUSE I WITH WE DON'T WHAT 951 00:32:54,920 --> 00:32:55,960 ELSE TO DO. 952 00:32:55,960 --> 00:32:57,120 I WOULD ENCOURAGE THAT IS 953 00:32:57,120 --> 00:32:58,320 PROBABLY NOT THE RIGHT MENTAL 954 00:32:58,320 --> 00:33:00,240 MODEL TO TAKE INTO THESE CASES. 955 00:33:00,240 --> 00:33:02,800 PART OF THE REASON I SAY THIS IS 956 00:33:02,800 --> 00:33:06,160 THAT THE RESULTS OF A STUDY THAT 957 00:33:06,160 --> 00:33:07,680 [INDISCERNIBLE] LED NOW ABOUT 10 958 00:33:07,680 --> 00:33:10,120 YEARS AGO IN WHICH HE ENROLLED 959 00:33:10,120 --> 00:33:13,280 THE SURROGATES OF 80 960 00:33:13,280 --> 00:33:14,400 INCAPACITATED CRITICALLY ILL 961 00:33:14,400 --> 00:33:15,880 PATIENTS WHILE THEY WERE IN ICU 962 00:33:15,880 --> 00:33:17,880 AND IN RANDOM ORDER PRESENTED TO 963 00:33:17,880 --> 00:33:19,080 THEM 16 DIFFERENT PROGNOSTIC 964 00:33:19,080 --> 00:33:20,480 STATEMENTS AND ASKED THE SIMPLE 965 00:33:20,480 --> 00:33:21,880 QUESTION, DO THEY UNDERSTAND IT? 966 00:33:21,880 --> 00:33:23,760 AND ASKED THEM TO RECORD THEIR 967 00:33:23,760 --> 00:33:25,360 INTERPRETATION OF THE STATEMENTS 968 00:33:25,360 --> 00:33:27,160 ON A PROBABILITY SCALE. 969 00:33:27,160 --> 00:33:29,720 AND SO ON THE LEFT SIDE OF THE 970 00:33:29,720 --> 00:33:30,920 SLIDE ARE THE 16 PROGNOSTIC 971 00:33:30,920 --> 00:33:32,880 STATEMENTS IN ORDER FROM 972 00:33:32,880 --> 00:33:33,880 ESSENTIALLY THE BEST PROGNOSIS 973 00:33:33,880 --> 00:33:36,040 ON TOP, TO THE WORST PROGNOSIS 974 00:33:36,040 --> 00:33:37,880 ON BOTTOM AND THEN IN GRAY YOU 975 00:33:37,880 --> 00:33:39,840 WILL SEE 3 DIFFERENT PROGNOSTIC 976 00:33:39,840 --> 00:33:43,520 STATEMENTS AND 90% CHANCE OF 977 00:33:43,520 --> 00:33:44,960 SURVIVING, 60% CHANCE OF 978 00:33:44,960 --> 00:33:46,120 SURVIVING AND 5%. 979 00:33:46,120 --> 00:33:49,360 SO HERE'S WHAT WE FOUND, JUST 980 00:33:49,360 --> 00:33:51,400 NOTE THAT THE DIAMONDS ARE THE 981 00:33:51,400 --> 00:33:52,200 MEDIAN RESPONSE, THE Xs ARE 982 00:33:52,200 --> 00:33:55,160 THE MEAN AND THE BARS IN BLUE 983 00:33:55,160 --> 00:33:59,040 ARE THE INNER CORTILE, AND THE 984 00:33:59,040 --> 00:34:01,640 LINES ARE THE RANGE OF RESONSS, 985 00:34:01,640 --> 00:34:03,320 SO LOOKING AT 90% CHANCE OF 986 00:34:03,320 --> 00:34:04,560 SURVIVAL STATEMENT, YOU CAN SEE 987 00:34:04,560 --> 00:34:06,800 THAT PEOPLE GENERALLY BUT NOT 988 00:34:06,800 --> 00:34:08,920 ALWAYS INTERPRETED A 90% CHANCE 989 00:34:08,920 --> 00:34:11,480 OF SURVIVAL AS INDEED 90%. 990 00:34:11,480 --> 00:34:14,280 AND THIS FINDINGS SUGGESTS TO ME 991 00:34:14,280 --> 00:34:15,120 THAT MOST SURROGATES CAN 992 00:34:15,120 --> 00:34:17,120 UNDERSTAND THESE KIND OF SIMPLE 993 00:34:17,120 --> 00:34:18,960 RISK OR SIMPLE PROGNOSTIC 994 00:34:18,960 --> 00:34:19,280 STATEMENTS. 995 00:34:19,280 --> 00:34:20,640 HOWEVER, IF YOU LOOK AT THEIR 996 00:34:20,640 --> 00:34:24,240 RESPONSES TO THE LITTLER 2 997 00:34:24,240 --> 00:34:24,920 NIEWMERRIC STATEMENTS SHADED IN 998 00:34:24,920 --> 00:34:27,680 GRAY, YOU WILL SEE THAT AS THE 999 00:34:27,680 --> 00:34:30,000 PROGNOSIS WORSENS, THE 1000 00:34:30,000 --> 00:34:30,960 SURROGATES INTERPRETATIONS 1001 00:34:30,960 --> 00:34:32,520 BECOME MORE OPTIMISTIC SO 1002 00:34:32,520 --> 00:34:34,120 LOOKING AT THE 5% CHANCE OF 1003 00:34:34,120 --> 00:34:36,760 SURVIVAL AND YOU SEE THAT THE 1004 00:34:36,760 --> 00:34:38,320 MEDIAN INTERPRETATION WAS A 15% 1005 00:34:38,320 --> 00:34:41,000 CHANCE OF SURVIVING AND TO ME 1006 00:34:41,000 --> 00:34:42,520 THIS FINDING SUGGESTS THERE'S 1007 00:34:42,520 --> 00:34:45,040 SOMETHING GOING ON JUST BEYOND 1008 00:34:45,040 --> 00:34:45,880 MISSED COMPREHENSION AND SO 1009 00:34:45,880 --> 00:34:47,520 DURING THE STUDY IT WAS A MIXED 1010 00:34:47,520 --> 00:34:49,920 METHOD STUDY AND WE CONDUCTED 1011 00:34:49,920 --> 00:34:52,240 STRUCTURED INTERVIEWS WITH THE 1012 00:34:52,240 --> 00:34:53,720 SURROGATES WHO OPTIMISTICALLY 1013 00:34:53,720 --> 00:34:55,640 INTERPRETED THE GRIM PROGNOSTIC 1014 00:34:55,640 --> 00:34:56,280 STATEMENTS AND ESSENTIALLY WHAT 1015 00:34:56,280 --> 00:34:58,000 WE DID IS PUT THE RESPONSES DOWN 1016 00:34:58,000 --> 00:34:59,600 IN FRONT OF THEM AND ASKED THEM 1017 00:34:59,600 --> 00:35:01,880 TO EXPLAIN SORT OF HOW THEY CAME 1018 00:35:01,880 --> 00:35:03,360 TO THEIR--RESPONSE THEY MARKED 1019 00:35:03,360 --> 00:35:05,520 ON THE PAGE. 1020 00:35:05,520 --> 00:35:07,320 AND THE CORE OF THE FINDINGS 1021 00:35:07,320 --> 00:35:09,000 THAT CAME OUT OF THIS WERE THAT 1022 00:35:09,000 --> 00:35:10,760 THIS WAS NOT ABOUT 1023 00:35:10,760 --> 00:35:12,200 MISUNDERSTANDING, THIS WAS 1024 00:35:12,200 --> 00:35:14,080 REALLY WHEN SURROGATES 1025 00:35:14,080 --> 00:35:15,520 REGISTERED AN OPTIMISTIC 1026 00:35:15,520 --> 00:35:16,880 INTERPRETATION OF A PROGNOSTIC 1027 00:35:16,880 --> 00:35:19,120 STATEMENT, IT WAS NOT THAT THEY 1028 00:35:19,120 --> 00:35:20,320 MISUNDERSTOOD, INSTEAD THEY WERE 1029 00:35:20,320 --> 00:35:21,960 DOING VARIOUS THINGS WITH IT, 1 1030 00:35:21,960 --> 00:35:24,120 WAS MANY OF THEM FELT THE NEED 1031 00:35:24,120 --> 00:35:25,120 TO EXPRESS OPTICAL IMAGES MI. SO 1032 00:35:25,120 --> 00:35:26,400 1 SAID I GUESS I UNDERSTAND THAT 1033 00:35:26,400 --> 00:35:31,320 THE PATIENT MAY DIE, I JUST HAVE 1034 00:35:31,320 --> 00:35:31,800 TO HELP ME. 1035 00:35:31,800 --> 00:35:34,320 ANOTHER OR ANOTHER GROUP OF 1036 00:35:34,320 --> 00:35:35,360 RESPONSES WAS AROUND BELIEVING 1037 00:35:35,360 --> 00:35:37,680 THAT THE INDIVIDUAL PATIENT'S 1038 00:35:37,680 --> 00:35:39,240 OUTCOME WOULD LIKELY BE BETTER 1039 00:35:39,240 --> 00:35:41,320 THAN THE PREDICTED OUTCOME, THIS 1040 00:35:41,320 --> 00:35:44,080 TRACKS WITH WHAT'S CALLED THE 1041 00:35:44,080 --> 00:35:45,360 UNOPTIMISM BIAS OR THE LAKE 1042 00:35:45,360 --> 00:35:46,240 [INDISCERNIBLE] EFFECT, AND THE 1043 00:35:46,240 --> 00:35:48,560 THEN THE THIRD GROUP OF 1044 00:35:48,560 --> 00:35:50,440 RESPONSES WASENTIOUS ESSENTIALLY 1045 00:35:50,440 --> 00:35:51,560 INDIVIDUALS EXPRESSING A 1046 00:35:51,560 --> 00:35:53,520 DISBELIEF OF PHYSICIANS ABILITY 1047 00:35:53,520 --> 00:35:55,040 TO PROGNOSTICATE AND THESE 1048 00:35:55,040 --> 00:35:56,680 FINDINGS REALLY MIRROR THOSE 1049 00:35:56,680 --> 00:35:58,840 FROM NUMEROUS STUDIES OUTSIDE 1050 00:35:58,840 --> 00:36:00,920 THE CONTEXT OF HOW INDIVIDUALS 1051 00:36:00,920 --> 00:36:04,680 RESPOND TO WHAT WE MIELT CALL A 1052 00:36:04,680 --> 00:36:05,680 THREATENING HEALTH INFORMATION. 1053 00:36:05,680 --> 00:36:07,160 SO PSYCHOLOGISTS HAVE 1054 00:36:07,160 --> 00:36:09,760 CHARACTERIZE A PHENOMENON CALLED 1055 00:36:09,760 --> 00:36:20,320 DEFENSIVE PROCESSING OF 1056 00:36:20,320 --> 00:36:21,560 PERSONALLY RELEVANT--PROCESS THE 1057 00:36:21,560 --> 00:36:22,520 INFORMATION IN A BIASED WAY 1058 00:36:22,520 --> 00:36:24,480 WHICH IS TO SAY THE SORT OF 1059 00:36:24,480 --> 00:36:27,040 MINIMIZE THE RISK THAT'S 1060 00:36:27,040 --> 00:36:27,320 INVOLVED. 1061 00:36:27,320 --> 00:36:29,520 AND SO I THINK THE IMPORTANT 1062 00:36:29,520 --> 00:36:30,920 MESSAGE HERE IS THAT RATHER THAN 1063 00:36:30,920 --> 00:36:33,760 THE ISSUE BEING SOLELY THAT 1064 00:36:33,760 --> 00:36:35,520 SURROGATES CAN'T UNDERSTAND 1065 00:36:35,520 --> 00:36:36,680 PROGNOSTIC INFORMATION, IS THAT 1066 00:36:36,680 --> 00:36:38,680 THERE ARE PSYCHOLOGICAL 1067 00:36:38,680 --> 00:36:40,480 MECHANISMS AT PLAY THAT CAUSE 1068 00:36:40,480 --> 00:36:41,400 THEM TO INTERPRET THESE 1069 00:36:41,400 --> 00:36:42,800 STATEMENTS IN A MORE OPTIMISTIC 1070 00:36:42,800 --> 00:36:45,120 WAY THAN THE CLINICIAN, INTENDS, 1071 00:36:45,120 --> 00:36:48,040 SO WHAT ARE WE GOING TO DO ABOUT 1072 00:36:48,040 --> 00:36:48,240 THIS. 1073 00:36:48,240 --> 00:36:49,480 TO GET BACK TO DAVE'S QUESTION 1074 00:36:49,480 --> 00:36:51,200 ABOUT HOW TO CONVEY THIS AND 1075 00:36:51,200 --> 00:36:52,560 AGAIN THERE'S NOT TIME TO FULLY 1076 00:36:52,560 --> 00:36:53,880 UNPACK THIS BUT WHAT I WOULD SAY 1077 00:36:53,880 --> 00:36:55,320 IS A COUPLE THINGS. 1078 00:36:55,320 --> 00:37:01,120 FIRST, I THINK RATHER THAN 1079 00:37:01,120 --> 00:37:02,520 ASCRIBING THE MISPERCEPTIONS TO 1080 00:37:02,520 --> 00:37:04,720 AND WE SHOULD BE ASKING 1081 00:37:04,720 --> 00:37:05,680 OURSELVES THE BROADER QUESTION 1082 00:37:05,680 --> 00:37:08,120 OF WHAT'S BEING ON THE SAME PAGE 1083 00:37:08,120 --> 00:37:08,520 WITH THE FAMILY? 1084 00:37:08,520 --> 00:37:10,280 AND TO ANSWER THAT, THERE ARE A 1085 00:37:10,280 --> 00:37:11,320 NUMBER OF DIFFERENT QUESTIONS 1086 00:37:11,320 --> 00:37:13,080 THAT I THINK ARE EMBEDDED IN 1087 00:37:13,080 --> 00:37:14,720 THERE, YOU KNOW THE FIRST IS 1088 00:37:14,720 --> 00:37:17,480 REALLY HAVE I ADDRESSED 1089 00:37:17,480 --> 00:37:18,720 [INDISCERNIBLE] AND SURPRISING 1090 00:37:18,720 --> 00:37:20,800 HOW OFTEN THEY HAVE ADDRESSED 1091 00:37:20,800 --> 00:37:22,520 PROGNOSIS BUT HAVEN'T AND IF 1092 00:37:22,520 --> 00:37:24,520 THAT'S THE CASE, THEN THE CASE 1093 00:37:24,520 --> 00:37:27,760 IS TO DISCLOSE PROGNOSIS AND SO, 1094 00:37:27,760 --> 00:37:29,400 THERE'S NOT CLEAR EVIDENCE ABOUT 1095 00:37:29,400 --> 00:37:30,280 THE MOST EFFECTIVE LANGUAGE TO 1096 00:37:30,280 --> 00:37:32,960 DO THIS SO IN THAT CONTEXT, I 1097 00:37:32,960 --> 00:37:33,760 FAVOR VERY PLAIN LANGUAGE, AND 1098 00:37:33,760 --> 00:37:35,640 SO IN THE CASE THAT WAS 1099 00:37:35,640 --> 00:37:36,200 PRESENTED IF THE CLINICIANS 1100 00:37:36,200 --> 00:37:38,840 BELIEVE THAT THE CHANCES FOR 1101 00:37:38,840 --> 00:37:41,720 SURVIVAL ARE FOR EXAMPLE VERY 1102 00:37:41,720 --> 00:37:43,680 CLOSE TO NIL BUT NOT QUITE 0, I 1103 00:37:43,680 --> 00:37:45,520 MAY SAY SOMETHING LIKE ALTHOUGH 1104 00:37:45,520 --> 00:37:47,760 I CAN'T PREDICT THE FUTURE FOR 1105 00:37:47,760 --> 00:37:49,080 ABSOLUTE CERTAINTY, WE ARE ALL 1106 00:37:49,080 --> 00:37:50,640 VERY CONCERNED THAT THERE'S 1107 00:37:50,640 --> 00:37:52,520 ALMOST NO CHANCE THAT SHE'LL 1108 00:37:52,520 --> 00:37:53,920 SURVIVE AND THEN STOP BECAUSE 1109 00:37:53,920 --> 00:37:59,520 THAT IS AN INCREDIBLE LOAMACYY 1110 00:37:59,520 --> 00:38:00,440 EMOTIONAL AND PSYCHOLOGICALLY 1111 00:38:00,440 --> 00:38:02,280 LADEN THING TO SAY AND THEN THE 1112 00:38:02,280 --> 00:38:04,000 WORK THEREAFTER AND TO FIGURE 1113 00:38:04,000 --> 00:38:06,960 OUT HAS IT LANDED SO THINKING 1114 00:38:06,960 --> 00:38:08,680 ABOUT AND ASKING 1S SELF-HAS 1115 00:38:08,680 --> 00:38:10,240 HAVE MISUNDERSTOOD WHAT I SAID 1116 00:38:10,240 --> 00:38:12,400 IN A FACTUAL WAY IS AN IMPORTANT 1117 00:38:12,400 --> 00:38:13,600 NEXT STEP AND CHECKING FOR 1118 00:38:13,600 --> 00:38:14,480 UNDERSTANDING IS AN IMPORTANT 1119 00:38:14,480 --> 00:38:16,440 ASPECT OF THIS AND IF THEY HAVE 1120 00:38:16,440 --> 00:38:18,200 DIFFERENT WAYS TO FRAME IT IN 1121 00:38:18,200 --> 00:38:19,280 WAYS THAT ARE COMPREHENSIBLE AND 1122 00:38:19,280 --> 00:38:21,560 BY AND LARGE THE ISSUE IS 1123 00:38:21,560 --> 00:38:24,200 NOT--IS NOT ABOUT COMPREHENSION 1124 00:38:24,200 --> 00:38:25,320 AND INSTEAD, AND LOOKING FOR 1125 00:38:25,320 --> 00:38:26,400 OTHER CONSIDERATIONS THAT ARE 1126 00:38:26,400 --> 00:38:29,240 CAUSING THE ISSUE, ARE THERE 1127 00:38:29,240 --> 00:38:30,760 RELIGIOUS BELIEFS FOR EXAMPLE 1128 00:38:30,760 --> 00:38:42,080 AND IF SO, POTENTIALLY AND AS I 1129 00:38:42,080 --> 00:38:44,320 SAID, MORE OPTIMISM, BIAS AND 1130 00:38:44,320 --> 00:38:45,320 GENERALIZATION, AND FOR THESE 1131 00:38:45,320 --> 00:38:47,320 IT'S HARDER TO KNOW WHAT TO DO 1132 00:38:47,320 --> 00:38:49,120 WITH IT BUT THESE ARE WHERE 1133 00:38:49,120 --> 00:38:51,800 THEY'RE ESPECIALLY HELPFUL FOR 1134 00:38:51,800 --> 00:38:53,320 PROVIDING INTENSIVE PSYCHOSOCIAL 1135 00:38:53,320 --> 00:38:53,920 SUPPORTIVE AND HELPING FAMILIES 1136 00:38:53,920 --> 00:38:55,920 MOVE THROUGH A PROCESS OF 1137 00:38:55,920 --> 00:38:58,200 ACCEPTING THIS GRIM INFORMATION. 1138 00:38:58,200 --> 00:38:59,680 MOVING ON TO THE THIRD QUESTION, 1139 00:38:59,680 --> 00:39:01,040 HOW LOW A CHANCE OF RECOVER 1140 00:39:01,040 --> 00:39:04,240 SETOO LOW AND I THINK 1 WAY TO 1141 00:39:04,240 --> 00:39:07,240 RE--IS TO REFRAME IT TO BE ABOUT 1142 00:39:07,240 --> 00:39:08,880 WHEN SHOULD A PARTICULAR COURSE 1143 00:39:08,880 --> 00:39:10,440 OF TREATMENT NOT BE PROVIDED 1144 00:39:10,440 --> 00:39:13,120 EVEN IF THE FAMILY OR PATIENT IS 1145 00:39:13,120 --> 00:39:13,480 REQUESTING IT. 1146 00:39:13,480 --> 00:39:15,040 AND I THINK HELPFUL INSIGHT ON 1147 00:39:15,040 --> 00:39:16,520 THIS QUESTION COMES FROM AND CAN 1148 00:39:16,520 --> 00:39:18,320 BE FOUND AT THE EVOLUTION OF 1149 00:39:18,320 --> 00:39:20,280 POLICIES AND PRACTICES ON 1150 00:39:20,280 --> 00:39:22,360 RESPONDING TO REQUESTS FOR 1151 00:39:22,360 --> 00:39:25,960 WHAT'S BEEN CALLED FUTILE OR 1152 00:39:25,960 --> 00:39:26,920 INAPPROPRIATE EXTREME. 1153 00:39:26,920 --> 00:39:30,760 SO LARRY SNYDER MAN IN THE EARLY 1154 00:39:30,760 --> 00:39:34,120 90S CHAMPIONED SOME EFFORTS TO 1155 00:39:34,120 --> 00:39:35,080 DETERMINE WHEN TREATMENT SHOULD 1156 00:39:35,080 --> 00:39:37,680 NOT BE PROVIDED ON THE GROUNDS 1157 00:39:37,680 --> 00:39:39,040 OF FERTILITY AND HE ADVOCATED 1158 00:39:39,040 --> 00:39:41,240 FOR WHAT HE CALLED USING A 1159 00:39:41,240 --> 00:39:42,640 QUANTITATIVE DEFINITION OF 1160 00:39:42,640 --> 00:39:44,320 FUTILITY GROUND INDEED A 1161 00:39:44,320 --> 00:39:44,920 UNIDIMENSIONAL CONSTRUCT TO 1162 00:39:44,920 --> 00:39:46,800 WHICH IS TO SAY THE LIKELIHOOD 1163 00:39:46,800 --> 00:39:48,120 OF BENEFIT AND HE ARGUED THAT 1164 00:39:48,120 --> 00:39:50,400 TREATMENT SHOULD BE CONSIDERED 1165 00:39:50,400 --> 00:39:52,160 FUTILE IF THE TREATMENT SHOWED 1166 00:39:52,160 --> 00:39:55,400 LESS THAN A 1%'VE--SORRY LESS 1167 00:39:55,400 --> 00:39:56,720 THAN A 100 PERCENT CHANCE OF THE 1168 00:39:56,720 --> 00:39:57,960 BENEFITING THE PATIENT AND HE 1169 00:39:57,960 --> 00:39:58,960 ARGUED THESE DECISIONS SHOULD BE 1170 00:39:58,960 --> 00:40:01,080 LEFT TO THE TREATING CLINICIANS 1171 00:40:01,080 --> 00:40:04,360 TO MAKE WITH LITTLE OR MOW 1172 00:40:04,360 --> 00:40:06,800 REQUIREMENT FOR IF WILL FAMILY 1173 00:40:06,800 --> 00:40:07,320 DISAGREES. 1174 00:40:07,320 --> 00:40:08,120 THIS APPROACH HAS REALLY 1175 00:40:08,120 --> 00:40:09,320 RECEIVED A GREAT DEAL OF 1176 00:40:09,320 --> 00:40:11,640 CRITICISM OVER THE YEARS AND IS 1177 00:40:11,640 --> 00:40:13,840 FRANKLY NOT BEEN WIDELY ADOPTED. 1178 00:40:13,840 --> 00:40:15,360 SOME OF THE KEY CRITICISMS HAVE 1179 00:40:15,360 --> 00:40:18,440 BEEN THAT IN REALITY, THERE ARE 1180 00:40:18,440 --> 00:40:21,920 RARELY THE NEEDED IMPERICAL DATA 1181 00:40:21,920 --> 00:40:24,040 TO MAKE THESE PROGNOSTICATIONS 1182 00:40:24,040 --> 00:40:27,840 WITH APPROPRIATE CONFIDENCE AND 1183 00:40:27,840 --> 00:40:29,320 ALSO INSUFFICIENT NEED FOR SAFE 1184 00:40:29,320 --> 00:40:30,520 GUARDS TO PREVENT ABUSE AND THEN 1185 00:40:30,520 --> 00:40:31,720 ALSO A CONCERN THAT THERE'S A 1186 00:40:31,720 --> 00:40:35,920 LACK OF ATTENTION TO OTHER 1187 00:40:35,920 --> 00:40:39,160 CONSIDERATIONS, BEYOND THE MERE 1188 00:40:39,160 --> 00:40:40,240 PROBABILITY OF SURVIVE THAT MAY 1189 00:40:40,240 --> 00:40:44,880 ALSO BE RELEVANT TO TREATMENT IS 1190 00:40:44,880 --> 00:40:46,840 INAPPROPRIATE OR NOT. 1191 00:40:46,840 --> 00:40:48,120 AND SO, BRODY AROUND THE SAME 1192 00:40:48,120 --> 00:40:50,200 TIME WAS 1 OF THE LEADING VOICES 1193 00:40:50,200 --> 00:40:53,320 FOR ARGUING FOR A STARKLY 1194 00:40:53,320 --> 00:40:55,160 DIFFERENT APPROACH TO EXPHIEDER 1195 00:40:55,160 --> 00:40:58,280 MANS AND BRODY ARGUED THAT WE 1196 00:40:58,280 --> 00:40:59,920 SHOULD CONCEPTUALIZE THESE AS 1197 00:40:59,920 --> 00:41:01,680 VALUE-LADEN AND SHOULD BE 1198 00:41:01,680 --> 00:41:02,240 CONSIDERING MEDICALLY 1199 00:41:02,240 --> 00:41:03,320 INAPPROPRIATE WHEN THE 1200 00:41:03,320 --> 00:41:05,000 CLINICIANS CAN THE INSTITUTION 1201 00:41:05,000 --> 00:41:07,320 JUDGE THAT THE TREATMENT IS WHAT 1202 00:41:07,320 --> 00:41:08,960 THEY CALLED INCOMPATIBLE WITH 1203 00:41:08,960 --> 00:41:11,120 THE MAINTENANCE OF PROFESSIONAL 1204 00:41:11,120 --> 00:41:12,080 INTEGRITY AND PROCEEDY 1205 00:41:12,080 --> 00:41:13,040 ACCURACIED THAT MULTIPLE 1206 00:41:13,040 --> 00:41:13,960 CONSIDERATIONS ARE RELEVANT TO 1207 00:41:13,960 --> 00:41:16,120 THIS DETERMINE NATION AND IN 1208 00:41:16,120 --> 00:41:19,240 ESSENCE HE ARGUED THAT TO CALL 1209 00:41:19,240 --> 00:41:19,680 TREATMENT MEDICALLY 1210 00:41:19,680 --> 00:41:31,160 INAPPROPRIATE THERE SHOULD BE A 1211 00:41:31,160 --> 00:41:33,280 WIDELY HELD VIEW--A VERY STRONG 1212 00:41:33,280 --> 00:41:34,840 EMPHASIS ON PROCEDURAL FAIRNESS 1213 00:41:34,840 --> 00:41:36,240 AND INCLUDED REQUIREMENTINGS FOR 1214 00:41:36,240 --> 00:41:38,080 INSTITUTIONAL REVIEW OF THE 1215 00:41:38,080 --> 00:41:39,320 CASES FOR OFFERING FAMILY THE 1216 00:41:39,320 --> 00:41:41,240 OPTION TO ATTEMPT TO TRANSFER TO 1217 00:41:41,240 --> 00:41:42,280 ANOTHER INSTITUTION THAT MIGHT 1218 00:41:42,280 --> 00:41:43,400 BE WILLING TO PROVIDE THE 1219 00:41:43,400 --> 00:41:45,320 TREATMENTS AND ALSO AT THE END 1220 00:41:45,320 --> 00:41:46,800 OF THE PROCESS, INFORMING THE 1221 00:41:46,800 --> 00:41:50,920 FAMILY OF THEIR RIGHT TO PURSUE 1222 00:41:50,920 --> 00:41:52,480 JUDICIAL INTERVENTION TO COMPEL 1223 00:41:52,480 --> 00:41:54,440 THE CLINICIANS TO PROVIDE 1224 00:41:54,440 --> 00:41:54,720 TREATMENT. 1225 00:41:54,720 --> 00:42:00,800 AND IN FACT TO MAKE A LONG STORY 1226 00:42:00,800 --> 00:42:05,560 SHORT, BRODY'S THOUGHTS ARE 1227 00:42:05,560 --> 00:42:07,600 GUIDE LINES FOR WHEN TREATMENT 1228 00:42:07,600 --> 00:42:10,840 IS INVOARPT AND WHAT I'M SHOWING 1229 00:42:10,840 --> 00:42:14,240 IS AN AMA ARTICLE AS WELL AS 1230 00:42:14,240 --> 00:42:15,240 ADIEVERGZAL GUIDELINES, BOTH OF 1231 00:42:15,240 --> 00:42:17,880 THESE REYECT THE USE OF A 1232 00:42:17,880 --> 00:42:20,760 UNIDIMENSION ALGORITHMS 1233 00:42:20,760 --> 00:42:21,320 QUANTITATIVE DEFINITION OF 1234 00:42:21,320 --> 00:42:22,720 FUTILITY AND ALL THINGS 1235 00:42:22,720 --> 00:42:24,720 CONSIDERED JUDGMENTS ABOUT 1236 00:42:24,720 --> 00:42:27,520 WHETHER THE BURDENS OF TREATMENT 1237 00:42:27,520 --> 00:42:28,680 ARE GROSSLY DISPROPORTIONATE TO 1238 00:42:28,680 --> 00:42:30,640 THE BENEFITS AND AGAIN BOTH OF 1239 00:42:30,640 --> 00:42:31,720 THESE PLACE A STRONG EMPHASIS ON 1240 00:42:31,720 --> 00:42:33,840 PUTTING IN PLACE A FAIR PROCESS 1241 00:42:33,840 --> 00:42:36,320 OF DISPUTE RESOLUTION, LIKE WHAT 1242 00:42:36,320 --> 00:42:36,960 BRODY CALLED FOR. 1243 00:42:36,960 --> 00:42:40,720 THERE'S A LOT TO SAY ABOUT THE 1244 00:42:40,720 --> 00:42:42,280 PARTICULARS OF THIS PARTICULAR 1245 00:42:42,280 --> 00:42:43,440 THE CONCEPT OF PROFESSIONAL 1246 00:42:43,440 --> 00:42:44,920 INTEGRITY AND MAYBE WE CAN COME 1247 00:42:44,920 --> 00:42:46,480 BACK TO THAT IN THE DISCUSSION 1248 00:42:46,480 --> 00:42:47,600 AND FINALLY IN THE LAST COUPLE 1249 00:42:47,600 --> 00:42:49,640 MINUTES I WANT TO SAY A FEW 1250 00:42:49,640 --> 00:42:52,680 THINGS ABOUT RESPONDING TO 1251 00:42:52,680 --> 00:42:53,760 CLINICIANS, THE STRESS ABOUT 1252 00:42:53,760 --> 00:42:56,560 CARING FOR PATIENTS IN THIS 1253 00:42:56,560 --> 00:42:58,200 SITUATION LIKE WHAT WAS RAISED 1254 00:42:58,200 --> 00:42:58,720 IN THIS CASE. 1255 00:42:58,720 --> 00:43:00,240 SO FROM THE CASE PRESENTATION, 1256 00:43:00,240 --> 00:43:01,160 IT SOWBDS LIKE THERE WERE AT 1257 00:43:01,160 --> 00:43:02,680 LEAST SOME OF THE NURSES 1258 00:43:02,680 --> 00:43:04,520 INVOLVED IN THE PATIENT'S CARE 1259 00:43:04,520 --> 00:43:05,560 THAT EXPRESSED MORAL DISTRESS 1260 00:43:05,560 --> 00:43:06,880 ABOUT THE SITUATION AND FOR 1261 00:43:06,880 --> 00:43:08,000 CLARITY, I THINK IT'S WORTH 1262 00:43:08,000 --> 00:43:09,920 TAKING A MEMORY CLONE TONIGHT 1263 00:43:09,920 --> 00:43:15,040 DEFINE WHAT WE MINE BY MORAL 1264 00:43:15,040 --> 00:43:16,680 DISTRESS AND ELIZABETH AT 1265 00:43:16,680 --> 00:43:18,320 EPSTEIN HAS DONE A LOT OF THIS 1266 00:43:18,320 --> 00:43:20,920 WORK, SHE SAYS WHEN AN 1267 00:43:20,920 --> 00:43:22,040 INDIVIDUAL IESHES DENTIFYS THE 1268 00:43:22,040 --> 00:43:22,960 ETHIC LOAMACYY APPROPRIATE 1269 00:43:22,960 --> 00:43:24,040 ACTION, BUT THAT ACTION CANNOT 1270 00:43:24,040 --> 00:43:26,320 BE TAKEN AND I'VE LISTED HERE 1271 00:43:26,320 --> 00:43:27,800 THE COMMON CAUSES IN THE ICU 1272 00:43:27,800 --> 00:43:29,120 SETTING THAT ARE GLEANED FROM A 1273 00:43:29,120 --> 00:43:30,240 VARIETY OF STUDIES, THE 1274 00:43:30,240 --> 00:43:31,360 TREATMENT IS JUDGED TO BE 1275 00:43:31,360 --> 00:43:32,520 BURDENSOME IS NOT IN THE 1276 00:43:32,520 --> 00:43:36,280 PATIENT'S BEST INTEREST, THERE'S 1277 00:43:36,280 --> 00:43:38,640 INADEQUATE PAIN CONTROL, 1278 00:43:38,640 --> 00:43:39,520 INADQUAITD PAIN COMMUNICATION 1279 00:43:39,520 --> 00:43:41,280 ABOUT DIAGNOSIS OR FALSE HOPE 1280 00:43:41,280 --> 00:43:42,560 GIVEN DURING THE COMMUNICATIONS 1281 00:43:42,560 --> 00:43:44,240 TO THE PATIENT OR FAMILY AND 1282 00:43:44,240 --> 00:43:45,240 OTHER THINGS LIKE INADEQUATE 1283 00:43:45,240 --> 00:43:47,400 STAFFING TO TAKE CARE OF THE 1284 00:43:47,400 --> 00:43:51,360 PATIENT'S NEEDS FULLY. 1285 00:43:51,360 --> 00:43:52,600 LET ME JUST SAY 1 MORE THING 1286 00:43:52,600 --> 00:43:54,720 ABOUT THIS, I WOULD LIKE TO JUST 1287 00:43:54,720 --> 00:43:56,640 FLAG AN INTERESTING CONCEPTUAL 1288 00:43:56,640 --> 00:43:57,840 ISSUE ABOUT THE CONSTRUCT OF 1289 00:43:57,840 --> 00:43:59,720 MORAL DISTRESS WHICH IS THAT THE 1290 00:43:59,720 --> 00:44:01,720 DEFINITION SEEMS TO REQUIRE THAT 1291 00:44:01,720 --> 00:44:02,880 THE ETHICALLY APPROPRIATE ACTION 1292 00:44:02,880 --> 00:44:06,720 IS CLEAR AND NOT BEING TAKEN AND 1293 00:44:06,720 --> 00:44:10,920 THIS AND AND THERE'S LEGITIMATE 1294 00:44:10,920 --> 00:44:11,760 DISAGREEMENT ABOUT ONGOING 1295 00:44:11,760 --> 00:44:13,520 TREATMENT IS IN FACT ETHICALLY 1296 00:44:13,520 --> 00:44:15,720 APPROPRIATE AND THEREFORE I 1297 00:44:15,720 --> 00:44:17,040 THINK THE TERM NORMORRAL 1298 00:44:17,040 --> 00:44:19,120 DISTRESS MAY NOT FULLY CAPTURE 1299 00:44:19,120 --> 00:44:20,000 THE COMPLEXITY OF THE SITUATION. 1300 00:44:20,000 --> 00:44:21,440 THE OTHER THING I WANT TO SAY IS 1301 00:44:21,440 --> 00:44:25,280 THAT ANOTHER REALITY OF ICU 1302 00:44:25,280 --> 00:44:27,560 CARE, IS THAT I THINK DAVE 1303 00:44:27,560 --> 00:44:29,360 MENTIONED THIS IN HIS OPENING 1304 00:44:29,360 --> 00:44:30,440 REMARKS THAT PROVIDING 1305 00:44:30,440 --> 00:44:32,520 APPROPRIATE ICU CARE CAN BE 1306 00:44:32,520 --> 00:44:33,240 INCREDIBLE LOAMACYY DISTRESSING 1307 00:44:33,240 --> 00:44:34,640 TO THE CLINICIANS DOING THE 1308 00:44:34,640 --> 00:44:38,240 HANDS ON WORK AND 1 WAY TO 1309 00:44:38,240 --> 00:44:40,520 CONCEPTUALIZE THIS IS A 1310 00:44:40,520 --> 00:44:41,560 HYPOTHETICAL NOT TOO DISSIMILAR 1311 00:44:41,560 --> 00:44:43,440 FROM THIS CASE, CONSIDER A CASE 1312 00:44:43,440 --> 00:44:45,080 WHERE THE CLINICIANS ALL AGREE 1313 00:44:45,080 --> 00:44:47,640 AS A 1% CHANCE OF SURVIVAL AND 1314 00:44:47,640 --> 00:44:49,240 THE PATIENT'S HAS THE DECISION 1315 00:44:49,240 --> 00:44:50,480 MAKING CAPACITY AND REQUESTS THE 1316 00:44:50,480 --> 00:44:51,320 TREATMENT EVEN THOUGH THE 1317 00:44:51,320 --> 00:44:54,520 TRIEMENT WILL COME WITH 1318 00:44:54,520 --> 00:44:55,720 SIGNIFICANT PAIN. 1319 00:44:55,720 --> 00:44:57,160 SO THE EMOTIONAL BURDEN OF THESE 1320 00:44:57,160 --> 00:44:58,560 CASES ON FRONT LINE CLINICIANS 1321 00:44:58,560 --> 00:45:01,880 REALLY COMES UP AND COMES TO THE 1322 00:45:01,880 --> 00:45:03,160 FORE WHEN YOU STEP BACK AND SEE 1323 00:45:03,160 --> 00:45:05,120 THAT THE NUMBERS NEEDED TO TREAT 1324 00:45:05,120 --> 00:45:06,320 THESE CASES ASK IS A HUNDRED, 1325 00:45:06,320 --> 00:45:07,600 WHICH IS TO SAY, YOU WILL HAVE 1326 00:45:07,600 --> 00:45:09,120 TO TREAT A HUNDRED PATIENTS OR 1327 00:45:09,120 --> 00:45:11,120 PUT A HUNDRED SIMILAR PATIENTS 1328 00:45:11,120 --> 00:45:12,320 THROUGH THIS BURDENSOME COURSE 1329 00:45:12,320 --> 00:45:14,320 OF ICU CARE FOR 1 TO SURVIVE. 1330 00:45:14,320 --> 00:45:16,640 AND SO A 99% OF THE CASES, THE 1331 00:45:16,640 --> 00:45:18,320 BEDSIDE NURSE WILL BE DOING MANY 1332 00:45:18,320 --> 00:45:19,240 OF THESE PAINFUL THINGS TO THE 1333 00:45:19,240 --> 00:45:22,200 PATIENT AND THE PATIENT WILL DIE 1334 00:45:22,200 --> 00:45:22,440 ANYWAY. 1335 00:45:22,440 --> 00:45:24,720 ASK I WOULD JUST POINT OUT THAT 1336 00:45:24,720 --> 00:45:27,040 ALTHOUGH THIS MAY BE--MAY WELL 1337 00:45:27,040 --> 00:45:27,880 BE CONSIDERED APPROPRIATE CARE 1338 00:45:27,880 --> 00:45:29,760 IN TERMS OF ANY INDIVIDUAL 1339 00:45:29,760 --> 00:45:30,760 PATIENTS BURDEN BENEFIT RATIO, 1340 00:45:30,760 --> 00:45:33,120 THE PROVISION OF THIS CARE, BY 1341 00:45:33,120 --> 00:45:34,960 THE PERSON WHOSE LAYING HANDS ON 1342 00:45:34,960 --> 00:45:37,400 THE PATIENT CAN BE MASSIVELY 1343 00:45:37,400 --> 00:45:37,720 DISTRACTING. 1344 00:45:37,720 --> 00:45:42,400 AND THIS IS AGAIN I THINK AND 1345 00:45:42,400 --> 00:45:44,360 IMPORTANT FROM AN INSTITUTIONAL 1346 00:45:44,360 --> 00:45:45,320 STANDPOINT FOR MANAGING THESE 1347 00:45:45,320 --> 00:45:46,760 CASES ASK REALLY TAKING 1348 00:45:46,760 --> 00:45:48,520 SERIOUSLY, THE CONCERNS THAT ARE 1349 00:45:48,520 --> 00:45:50,920 BEING RAISED BY THE CLINICIANS, 1350 00:45:50,920 --> 00:45:52,400 BOTH FOR THE PATIENT'S GOOD BUT 1351 00:45:52,400 --> 00:45:54,280 ALSO FOR THE CLINICIANS WELL 1352 00:45:54,280 --> 00:45:56,520 BEING AND FOR THE INTEGRITY OF 1353 00:45:56,520 --> 00:45:58,600 THE CULTURE IN THAT ICU. 1354 00:45:58,600 --> 00:45:59,800 AND THE KINDS OF INTERVENTIONS 1355 00:45:59,800 --> 00:46:02,480 THAT ARE LIKELY TO BE HELPFUL 1356 00:46:02,480 --> 00:46:03,640 ARE BROADLY SPEAKING STRATEGIES 1357 00:46:03,640 --> 00:46:05,320 TO IDENTIFY AND METIGATE THE 1358 00:46:05,320 --> 00:46:06,520 ROOT CAUSES OFLET DISTRESS IF 1359 00:46:06,520 --> 00:46:07,920 POSSIBLE AND THIS COULD BE 1360 00:46:07,920 --> 00:46:09,560 ACCOMPLISHED THROUGH A SKILLFUL 1361 00:46:09,560 --> 00:46:11,960 ETHICS CONSULT AND SOME ALSO, 1362 00:46:11,960 --> 00:46:13,120 INSTITUTIONS HAVE WHAT'S BEEN 1363 00:46:13,120 --> 00:46:15,280 CALLED A MORAL DISTRESS CONSULT 1364 00:46:15,280 --> 00:46:17,520 SERVICE AND THESE CONSULTATIONS 1365 00:46:17,520 --> 00:46:19,040 GENERALLY INVOLVE DOING THINGS 1366 00:46:19,040 --> 00:46:21,760 LIKE INSURING THAT THERE ARE 1367 00:46:21,760 --> 00:46:23,040 CLEAR PROGNOSTIC DISCUSSIONS AND 1368 00:46:23,040 --> 00:46:24,720 DISCLOSURE OF TREATMENT OPTIONS 1369 00:46:24,720 --> 00:46:26,560 OTHER THAN INTENSIVE CARE AND 1370 00:46:26,560 --> 00:46:27,800 THEN IF TREATMENT IS JUDGED TO 1371 00:46:27,800 --> 00:46:28,920 BE APPROPRIATE AND CONTINUED 1372 00:46:28,920 --> 00:46:42,480 INSURING THAT ALL THE ICU TEAM 1373 00:46:42,480 --> 00:46:44,800 MEMBERS--IN PLACE FOR OPTIMAL 1374 00:46:44,800 --> 00:46:45,440 PERIPROCEDURAL PAIN CONTROL AND 1375 00:46:45,440 --> 00:46:49,200 THEN I THINK THE LAST 2 HERE ARE 1376 00:46:49,200 --> 00:46:49,880 PARTICULARLY IMPORTANT, MAKING 1377 00:46:49,880 --> 00:46:51,720 SURE THAT AS NURSES AND 1378 00:46:51,720 --> 00:46:53,840 CLINICIANS ARE PROVIDING THIS 1379 00:46:53,840 --> 00:46:55,240 CARE LONGITUDINALLY THAT THEY 1380 00:46:55,240 --> 00:46:56,440 ARE RECEIVING INTENSIVE SUPPORT 1381 00:46:56,440 --> 00:46:57,840 BECAUSE IT'S SO DISTRESSING AND 1382 00:46:57,840 --> 00:46:59,160 FINALLY THE CASES IN WHICH 1383 00:46:59,160 --> 00:47:00,800 NURSES OR OTHER CLINICIANS SAY, 1384 00:47:00,800 --> 00:47:02,120 I UNDERSTAND THIS IS ACCEPTED 1385 00:47:02,120 --> 00:47:04,680 THERAPY BUT I JUST HAVE A 1386 00:47:04,680 --> 00:47:05,720 CONSCIOUS BASED OBJECTION TO IT, 1387 00:47:05,720 --> 00:47:09,720 THERE SHOULD BE PROCESSES IN 1388 00:47:09,720 --> 00:47:11,120 PLACE TO COMBAT THOSE IF 1389 00:47:11,120 --> 00:47:12,000 POSSIBLE. 1390 00:47:12,000 --> 00:47:13,320 ALL RIGHT, SO, LAST THING, AND I 1391 00:47:13,320 --> 00:47:14,400 WILL JUST CLOSE BY SAYING FOR 1392 00:47:14,400 --> 00:47:16,720 ANYONE WHO WANTS TO THINK MORE 1393 00:47:16,720 --> 00:47:18,120 ABOUT THE PSYCHOLOGICAL 1394 00:47:18,120 --> 00:47:20,720 DIMENSIONS OF WHY ICU TEAMS AND 1395 00:47:20,720 --> 00:47:22,120 ONCOLOGY TEAMS SOMETIMES HAVE 1396 00:47:22,120 --> 00:47:23,840 FAIRLY DEEP DISAGREEMENTS ABOUT 1397 00:47:23,840 --> 00:47:25,600 WHAT CONSTITUTES APPROPRIATE 1398 00:47:25,600 --> 00:47:28,280 CARE, A MUST READ OF STEWART 1399 00:47:28,280 --> 00:47:29,200 YOUNGENER THOUGHTFUL EXPLORATION 1400 00:47:29,200 --> 00:47:31,360 OF THIS TOPIC NOW ALMOST 35 1401 00:47:31,360 --> 00:47:34,160 YEARS AGO AND I REREAD THIS IN 1402 00:47:34,160 --> 00:47:35,280 PREPARATION FOR TODAY AND THE 1403 00:47:35,280 --> 00:47:38,840 THEMES HE HITS ON, ARE 1404 00:47:38,840 --> 00:47:40,920 ESSENTIALLY ENTIRELY RELEVANT TO 1405 00:47:40,920 --> 00:47:41,520 CONTEMRARE PRACTICE. 1406 00:47:41,520 --> 00:47:43,720 I WILL STOP THERE AND I REALLY 1407 00:47:43,720 --> 00:47:47,960 LOOK FORWARD TO THE DISCUSSION. 1408 00:47:47,960 --> 00:47:48,960 THANKS SO MUCH. 1409 00:47:48,960 --> 00:47:50,160 >> THIS IS FABULOUS, THANKS VERY 1410 00:47:50,160 --> 00:47:51,520 MUCH FOR THE COMMENTS DOUG. 1411 00:47:51,520 --> 00:47:54,640 SO FOR PEOPLE WHO CAME LATE, 1412 00:47:54,640 --> 00:47:55,800 QUICK REMINDERS, FOR CME CREDIT 1413 00:47:55,800 --> 00:47:59,920 THE CODE YOU TEXT IS 36707. 1414 00:47:59,920 --> 00:48:02,480 36707 AND IF YOU WANT TO ASK ANY 1415 00:48:02,480 --> 00:48:04,120 QUESTIONS CLICK ON THE LIVE 1416 00:48:04,120 --> 00:48:08,240 FEEDBACK BUTTON THAT'S ON THE 1417 00:48:08,240 --> 00:48:08,720 SITE. 1418 00:48:08,720 --> 00:48:11,200 SO FIRST I WANT TO START WITH 1419 00:48:11,200 --> 00:48:13,480 JUST BRIEFLY MY INVOLVEMENT WITH 1420 00:48:13,480 --> 00:48:15,120 THIS WHICH WAS MINIMAL COMPARED 1421 00:48:15,120 --> 00:48:17,960 TO ALEX'S AND DANS BUT SOME 1422 00:48:17,960 --> 00:48:20,280 PEOPLE IN THE CHA WERE ASKING 1423 00:48:20,280 --> 00:48:21,320 QUESTIONS ABOUT ADVANCE 1424 00:48:21,320 --> 00:48:22,320 DIRECTIVES, WHAT DO WE KNOW 1425 00:48:22,320 --> 00:48:24,920 ABOUT THE PATIENT'S WISHES, I 1426 00:48:24,920 --> 00:48:26,240 THINK ALEX MENTIONED THIS 1427 00:48:26,240 --> 00:48:27,080 BRIEFLY, INITIALLY THE PATIENT 1428 00:48:27,080 --> 00:48:30,600 WAS THE 1 WHO SORT OF INITIATED 1429 00:48:30,600 --> 00:48:31,680 MOVING TOWARDS MORE AGGRESSIVE 1430 00:48:31,680 --> 00:48:33,200 CARE AND WANTED IT AND WANTED IT 1431 00:48:33,200 --> 00:48:35,520 FOR A LONG TIME AND WAS 1432 00:48:35,520 --> 00:48:37,360 SUPPORTIVE OF IT EVEN WHEN THERE 1433 00:48:37,360 --> 00:48:37,960 WERE PROBLEMS. 1434 00:48:37,960 --> 00:48:40,080 NOW AS THINGS WENT LATER THERE 1435 00:48:40,080 --> 00:48:41,880 WERE TIMES WHEN SHE WOULD REFUSE 1436 00:48:41,880 --> 00:48:43,560 CERTAIN THINGS BUT IT OFTEN 1437 00:48:43,560 --> 00:48:45,640 WASN'T CLEAR IF THAT INVOLVED 1438 00:48:45,640 --> 00:48:48,400 HER WANTING TO REFUSE THOSE 1439 00:48:48,400 --> 00:48:49,400 SPECIFIC PROCEDURES, OR IF SHE 1440 00:48:49,400 --> 00:48:50,680 WAS STARTING TO QUESTION THE 1441 00:48:50,680 --> 00:48:52,360 WHOLE GOAL OF CARE. 1442 00:48:52,360 --> 00:48:55,400 AND SO, WITH THAT, I WOULD JUST, 1443 00:48:55,400 --> 00:48:58,280 YOU MENTIONED--I WANT TO BRING 1444 00:48:58,280 --> 00:48:59,880 IT BACK AND MAYBE TIE TOGETHER 1445 00:48:59,880 --> 00:49:01,800 AND BRODY'S VIEW ON THIS. 1446 00:49:01,800 --> 00:49:03,280 BECAUSE I CAN IMAGINE, JUST IF 1447 00:49:03,280 --> 00:49:05,520 YOU HAVE THOUGHTS ON THIS, I CAN 1448 00:49:05,520 --> 00:49:07,800 IMAGINE IF I WAS 1 OF THOSE 1449 00:49:07,800 --> 00:49:08,760 NURSES, I WASN'T THANKFULLY 1450 00:49:08,760 --> 00:49:10,520 BECAUSE I THINK WHAT THEY WERE 1451 00:49:10,520 --> 00:49:14,880 DOING WAS HEROIC AND INCREDIBLY 1452 00:49:14,880 --> 00:49:17,040 DIFFICULT, BUT I HAD BEEN 1 OF 1453 00:49:17,040 --> 00:49:18,040 THOSE NURSES AND YOU TOLD ME 1454 00:49:18,040 --> 00:49:19,800 OKAY, YOU WILL HAVE 500 PATIENTS 1455 00:49:19,800 --> 00:49:21,720 LIKE THIS, YOU WILL TURN THEM 10 1456 00:49:21,720 --> 00:49:23,000 TIMES A DAY, THEY'RE GOING TO 1457 00:49:23,000 --> 00:49:24,400 SCREAM IN PAIN AND CRY AND YOU 1458 00:49:24,400 --> 00:49:26,920 WILL DO IT FOR ALL 500 OF THEM, 1459 00:49:26,920 --> 00:49:28,720 1 OF THEM OR 2 OF THEM ARE GOING 1460 00:49:28,720 --> 00:49:31,600 TO GET BETTER, AND BE REALLY 1461 00:49:31,600 --> 00:49:32,880 THANKFUL, AND THE OTHERS ARE 1462 00:49:32,880 --> 00:49:38,960 BASICALLY GOING TO BE TORTURING 1463 00:49:38,960 --> 00:49:39,920 BEFORE THEY DIE. 1464 00:49:39,920 --> 00:49:43,080 IF YOU GAVE ME THIS AGAINST MY 1465 00:49:43,080 --> 00:49:44,600 PROFESSIONAL CONSCIOUS I CAN'T 1466 00:49:44,600 --> 00:49:45,920 TORTURE 500 PATIENTS TO HELP 1 1467 00:49:45,920 --> 00:49:48,800 OR 2, I WILL NOT DO IT, WE CAN'T 1468 00:49:48,800 --> 00:49:50,200 GIVE THIS CARE, BUT IT I WAS 1 1469 00:49:50,200 --> 00:49:52,320 OF THOSE PATIENTS AND YOU SAID 1470 00:49:52,320 --> 00:49:53,400 OKAY, DAVE, YOU'RE 20 YEARS OLD, 1471 00:49:53,400 --> 00:49:56,640 HAVE YOU 2 CHOICES YOU CAN TRY 1472 00:49:56,640 --> 00:49:58,320 THIS AND YOU CAN LIVE OR YOU END 1473 00:49:58,320 --> 00:49:59,520 YOUR LIFE, I DON'T KNOW WHAT I 1474 00:49:59,520 --> 00:50:01,320 WOULD DO TBH THIS SITUATION, I 1475 00:50:01,320 --> 00:50:02,240 CAN IMAGINE SAYING I WANT TO 1476 00:50:02,240 --> 00:50:04,080 GIVE IT A TRY. 1477 00:50:04,080 --> 00:50:07,960 SO IS THERE A WAY TO RECONCILE 1478 00:50:07,960 --> 00:50:10,120 THOSE PERSPECTIVES AND IS THAT A 1479 00:50:10,120 --> 00:50:12,320 WIN OR DEPEND ON CIRCUMSTANCES? 1480 00:50:12,320 --> 00:50:16,440 >> DAVE, IT'S A GREAT QUESTION, 1481 00:50:16,440 --> 00:50:17,440 I MEAN THE--THE REALITY, WE HAVE 1482 00:50:17,440 --> 00:50:23,920 A HUGE PROBLEM BECAUSE NO 1 1483 00:50:23,920 --> 00:50:24,760 WOULD WANT THIS. 1484 00:50:24,760 --> 00:50:27,160 IT'S HORRIBLE AND I MUST SAY, I 1485 00:50:27,160 --> 00:50:31,160 WORK IN 1 OF THE COVID UNITS AND 1486 00:50:31,160 --> 00:50:32,640 IT'S NOT QUITE AS BAD AS YOU 1487 00:50:32,640 --> 00:50:33,760 DESCRIBE BUT WHEN YOU WORK IN 1488 00:50:33,760 --> 00:50:35,120 THE COVID UNIT AND THE ONLY 1489 00:50:35,120 --> 00:50:36,880 PATIENTS YOU TAKE CARE OF ARE 1490 00:50:36,880 --> 00:50:38,600 THE PEOPLE WHO GET INTERNATIONAL 1491 00:50:38,600 --> 00:50:39,720 CLASSIFICATION BAITED AND 1492 00:50:39,720 --> 00:50:41,240 REMEMBER THE MORTALITY RATE IS 1493 00:50:41,240 --> 00:50:43,720 80% OR SO SO WE'RE GETTING VERY 1494 00:50:43,720 --> 00:50:46,400 CLOSE IN ICUs WHERE WE'RE 1495 00:50:46,400 --> 00:50:47,240 LEADING TO TREAT SEVERAL 1496 00:50:47,240 --> 00:50:48,800 PATIENTS TO SAVE 1 AND THAT IS 1497 00:50:48,800 --> 00:50:50,880 INCREDIBLY HARD ON THE STAFF. 1498 00:50:50,880 --> 00:50:52,800 THAT IS A MUCH WORSE MORTALITY 1499 00:50:52,800 --> 00:50:54,200 RATE THAN WHAT WE'RE USED TO AND 1500 00:50:54,200 --> 00:50:56,560 THE REASON THAT I THINK THE 1501 00:50:56,560 --> 00:50:57,440 THOUGHT EXPERIMENT DOESN'T QUITE 1502 00:50:57,440 --> 00:51:01,240 WORK DAVE IS THAT IN REALITY, 1503 00:51:01,240 --> 00:51:03,560 ICU MORTALITY RATES ARE 15-20% 1504 00:51:03,560 --> 00:51:05,880 AND IN REALITY, NURSES ARE 1505 00:51:05,880 --> 00:51:07,520 ESSENTIALLY WILL NEVER BE ASKED 1506 00:51:07,520 --> 00:51:10,800 TO COME TOA DO A JOB THAT ALMOST 1507 00:51:10,800 --> 00:51:14,440 ALWAYS INVOLVES THE PATIENT, SO 1508 00:51:14,440 --> 00:51:16,640 THAT'S NOT--DOESN'T QUITE ANSWER 1509 00:51:16,640 --> 00:51:19,320 THE DILEMMA, THE REASON THE 1510 00:51:19,320 --> 00:51:20,880 DILEMMA IS IMPOSSIBLE TO SORT 1511 00:51:20,880 --> 00:51:22,160 OUT BUT THAT THOUGHT EXPERIMENT 1512 00:51:22,160 --> 00:51:23,120 DOESN'T REALLY REFLECT THE 1513 00:51:23,120 --> 00:51:24,920 REALITIES OF WHAT NURSES WILL 1514 00:51:24,920 --> 00:51:29,320 GENERALLY BE ASKED TO DO. 1515 00:51:29,320 --> 00:51:29,720 >> THANK YOU. 1516 00:51:29,720 --> 00:51:30,880 SO THIS IS A SPRINGING OF 1517 00:51:30,880 --> 00:51:33,440 QUESTION THAT I HADN'T PREPARED 1518 00:51:33,440 --> 00:51:35,000 YOU FOR, SO I APOLOGIZE IF YOU 1519 00:51:35,000 --> 00:51:35,840 DON'T HAVE THOUGHTS ON THIS BUT 1520 00:51:35,840 --> 00:51:38,520 A NUMBER OF PEOPLE HAVE BEEN 1521 00:51:38,520 --> 00:51:42,800 E-MAILS ME AND ASKING WHETHER 1522 00:51:42,800 --> 00:51:53,920 THE RESEARCH SETTING, SO--CENTER 1523 00:51:53,920 --> 00:51:55,120 CONSIDERED OR PARTICIPATING IN A 1524 00:51:55,120 --> 00:51:56,400 CLINICAL TRIAL? 1525 00:51:56,400 --> 00:51:58,920 DO YOU THINK THAT INFLUENCES OR 1526 00:51:58,920 --> 00:52:02,520 SHOULD INFLUENCE THESE ISSUES 1 1527 00:52:02,520 --> 00:52:03,600 WAY OR ANOTHER? 1528 00:52:03,600 --> 00:52:05,400 >> WELL I GUESS, IT COULD BE 1529 00:52:05,400 --> 00:52:06,520 THAT YOU COULD HANDLE THAT 1530 00:52:06,520 --> 00:52:08,400 THROUGH THE STANDPOINT OF 1531 00:52:08,400 --> 00:52:09,320 KNOWLEDGE GENERATION OR FROM THE 1532 00:52:09,320 --> 00:52:10,120 STANDPOINT AS THE CLINICAL 1533 00:52:10,120 --> 00:52:12,000 CENTER BEING THE PLACE OF LAST 1534 00:52:12,000 --> 00:52:13,000 RESORT AND THEREFORE MAYBE 1535 00:52:13,000 --> 00:52:15,720 THERE'S MORE OF AN OBLIGATION TO 1536 00:52:15,720 --> 00:52:17,080 KEEP GOING LONGER. 1537 00:52:17,080 --> 00:52:20,040 YOU KNOW I--I THINK THIS IS WHY 1538 00:52:20,040 --> 00:52:20,920 BRODY'S FORMULATION IS SO 1539 00:52:20,920 --> 00:52:25,600 HELPFUL IN THE SENSE THAT HIS 1540 00:52:25,600 --> 00:52:27,480 CLAIM IS THAT WE DON'T WANT TO 1541 00:52:27,480 --> 00:52:29,960 GROUND THIS IN THE CULTURE OF 1 1542 00:52:29,960 --> 00:52:33,120 HOSPITAL OR 1 ICU AND INSTEAD, 1543 00:52:33,120 --> 00:52:35,000 WE'RE TRYING TO ASSURE OURSELVES 1544 00:52:35,000 --> 00:52:36,360 THAT ALL INSTITUTIONS ARE 1545 00:52:36,360 --> 00:52:37,440 SAYING, LISTEN THIS IS NOT THE 1546 00:52:37,440 --> 00:52:40,000 KIND OF CARE THAT WE WOULD 1547 00:52:40,000 --> 00:52:40,840 PROVIDE, IT'S GROSSLY 1548 00:52:40,840 --> 00:52:41,760 DISPROPORTIONATE AND THAT'S 1549 00:52:41,760 --> 00:52:45,520 WHERE THAT LOOKING AROUND FOR 1550 00:52:45,520 --> 00:52:46,240 OTHER HOSPITALS BECOME SO 1551 00:52:46,240 --> 00:52:47,640 IMPORTANT BECAUSE AS YOU DO 1552 00:52:47,640 --> 00:52:48,880 THAT, AS YOU ASK THAT QUESTION 1553 00:52:48,880 --> 00:52:50,400 OF OTHER HADN'TS IF THE ANSWER 1554 00:52:50,400 --> 00:52:53,400 IS NO AND NO, AND NO, AND NO, 1555 00:52:53,400 --> 00:52:54,960 AND NO, YOU BEGIN TO GET IT A 1556 00:52:54,960 --> 00:52:56,960 PLACE WHERE YOU'RE GETTING A 1557 00:52:56,960 --> 00:52:58,680 HIGHER DEGREE OF CERTAINTY THAT 1558 00:52:58,680 --> 00:53:00,800 WHAT'S REQUESTED IS OUTSIDE THE 1559 00:53:00,800 --> 00:53:02,000 BOUNDARIES OF ACCEPTED PRACTICE. 1560 00:53:02,000 --> 00:53:06,480 NOW WHETHER OR NOT THE NIH OR A 1561 00:53:06,480 --> 00:53:07,760 PLACE LIKE PITT, ACADEMIC 1562 00:53:07,760 --> 00:53:10,080 CENTERS THAT PRIDE THEMSELVES ON 1563 00:53:10,080 --> 00:53:11,920 INNOVATION MIGHT BE WILLING TO 1564 00:53:11,920 --> 00:53:14,040 GO FARTHER, I THINK THAT WOULD 1565 00:53:14,040 --> 00:53:15,560 BE PERMISSIBLE, TO SAY, LISTEN, 1566 00:53:15,560 --> 00:53:20,120 WE GET THAT THIS IS HARD ON 1567 00:53:20,120 --> 00:53:21,880 PEOPLE, BUT WE--IT'S PART OF OUR 1568 00:53:21,880 --> 00:53:24,280 MISSION TO REALLY PUSH SCIENCE 1569 00:53:24,280 --> 00:53:25,120 AND WE'RE THEREFORE WILLING TO 1570 00:53:25,120 --> 00:53:26,960 DO IT AND I THINK IF THAT'S THE 1571 00:53:26,960 --> 00:53:28,720 CASE, EVERYONE NEEDS TO BE 1572 00:53:28,720 --> 00:53:29,760 ONBOARD WITH THAT BECAUSE THAT 1573 00:53:29,760 --> 00:53:34,960 CAN BE A VERY DISTRESSING 1574 00:53:34,960 --> 00:53:35,240 APPROACH. 1575 00:53:35,240 --> 00:53:36,840 >> SOME OF YOUR SLIDES BROADEN 1576 00:53:36,840 --> 00:53:39,600 THE ISSUE OF SURGASY AND I WAS 1577 00:53:39,600 --> 00:53:41,120 WONDERING IF YOU COULD DISCUSS 1578 00:53:41,120 --> 00:53:42,720 THAT FOR A MOMENT. 1579 00:53:42,720 --> 00:53:45,040 SOME PEOPLE ARE ASKING HOW THE 1580 00:53:45,040 --> 00:53:47,120 CASE WHERE IT'S NOT THE 1581 00:53:47,120 --> 00:53:49,320 PATIENT--SO IN THIS CASE, IT 1582 00:53:49,320 --> 00:53:50,760 VARIED, SOMETIMES YOU COULD 1583 00:53:50,760 --> 00:53:51,880 COMMUNICATE, AT SOME POINTS YOU 1584 00:53:51,880 --> 00:53:53,040 COULD COMMUNICATE WITH THE 1585 00:53:53,040 --> 00:53:54,640 PATIENTS, OTHER TIMES YOU 1586 00:53:54,640 --> 00:53:54,920 COULDN'T. 1587 00:53:54,920 --> 00:53:57,000 THERE'S THE GRANDMOTHER THERE, 1588 00:53:57,000 --> 00:53:59,080 BUT SO, WHAT ABOUT WHEN WE WERE 1589 00:53:59,080 --> 00:54:01,720 TALKING TO THE SURROGATE RATHER 1590 00:54:01,720 --> 00:54:02,320 THAN THE PATIENT? 1591 00:54:02,320 --> 00:54:03,560 AND I DON'T KNOW YOUR EXPERIENCE 1592 00:54:03,560 --> 00:54:07,240 BUT MY EXPERIENCE IS THAT THE 1593 00:54:07,240 --> 00:54:09,120 WILLING TO GIVE JUST EVEN AN 1594 00:54:09,120 --> 00:54:10,160 EXTRAORDINARY LOW CHANCE, GIVE 1595 00:54:10,160 --> 00:54:13,320 IT A SHOT, ALMOST SEEMS TO ME TO 1596 00:54:13,320 --> 00:54:15,000 INCREASE THE SURROGATES WHO ARE 1597 00:54:15,000 --> 00:54:18,080 JUST EVEN LESS WILLING OR MORE 1598 00:54:18,080 --> 00:54:19,720 RELUCTANT TO FEEL LIKE WHAT THEY 1599 00:54:19,720 --> 00:54:21,280 MIGHT SEE AS GIVING UP ON THEIR 1600 00:54:21,280 --> 00:54:24,480 LOVED 1 AND HOW WE CAN HELP THEM 1601 00:54:24,480 --> 00:54:25,720 MAKE THOSE DECISIONS. 1602 00:54:25,720 --> 00:54:28,400 >> YEAH, WE ACTUALLY STUDIED 1603 00:54:28,400 --> 00:54:31,320 THIS SOME YEARS AGO, WE DID 1604 00:54:31,320 --> 00:54:32,800 A--WE ENROLLED SURROGATES AND WE 1605 00:54:32,800 --> 00:54:33,960 ASKED THEM AT WHAT POINT WOULD 1606 00:54:33,960 --> 00:54:35,840 YOU SAY IT'S JUST TOO MUCH FOR 1607 00:54:35,840 --> 00:54:37,960 YOUR LOVED 1 TO KEEP GOING AND 1608 00:54:37,960 --> 00:54:40,240 WE ACTUALLY GAVE THEM THE OPTION 1609 00:54:40,240 --> 00:54:43,280 OF, YOU KNOW WE WE WALKED DOWN 1610 00:54:43,280 --> 00:54:45,320 THE PROBABILITY SCALE AND 1611 00:54:45,320 --> 00:54:47,560 INCLUDING 0 AND 25% OF 1612 00:54:47,560 --> 00:54:49,080 SURROGATES SAID EVEN IF THE 1613 00:54:49,080 --> 00:54:50,920 CHANCE IS 0, EVEN THE DOCTOR 1614 00:54:50,920 --> 00:54:52,880 SAYS THE CHANCE IS 0, I WOULD 1615 00:54:52,880 --> 00:54:55,920 KEEP GOING AND I DO THINK THAT 1616 00:54:55,920 --> 00:54:57,200 REFLECTS THE PSYCHOLOGICAL 1617 00:54:57,200 --> 00:54:58,400 DIFFICULTY OF DECIDING FOR 1618 00:54:58,400 --> 00:54:59,440 OTHERS, PARTICULARLY WHEN THE 1619 00:54:59,440 --> 00:55:02,240 DECISION IS SO TIGHTLY LINKED TO 1620 00:55:02,240 --> 00:55:03,560 THE PATIENT DYING. 1621 00:55:03,560 --> 00:55:05,920 AGAIN, WE DON'T KNOW HOW TO 1622 00:55:05,920 --> 00:55:06,960 OVERCOME THAT FULLY. 1623 00:55:06,960 --> 00:55:08,640 BUT WHEY WOULD POINT TO IS THE 1624 00:55:08,640 --> 00:55:11,720 IMPORTANCE OF ATTENDING TO THAT 1625 00:55:11,720 --> 00:55:12,440 PSYCHOLOGICAL DISTRESS IN 1626 00:55:12,440 --> 00:55:14,920 LONGITUDINAL WAYS AND THIS IS 1627 00:55:14,920 --> 00:55:16,560 REALLY WHAT PALLIATIVE CARE 1628 00:55:16,560 --> 00:55:18,120 CLINICIANS DO WELL IS BY MEETING 1629 00:55:18,120 --> 00:55:19,560 FAMILIES WHERE THEY ARE AND 1630 00:55:19,560 --> 00:55:21,560 HELPING THEM OVERTIME MOVE 1631 00:55:21,560 --> 00:55:22,520 THROUGH THE STAGES OF GRIEF TO 1632 00:55:22,520 --> 00:55:24,280 COME TO AN ACCEPTANCE OF WHERE 1633 00:55:24,280 --> 00:55:25,840 THE PATIENT IS, DOESN'T ALWAYS 1634 00:55:25,840 --> 00:55:28,160 WORK BUT IT'S A FAR BETTER 1635 00:55:28,160 --> 00:55:30,000 STRATEGY THAN SIMPLY SORT OF 1636 00:55:30,000 --> 00:55:31,600 TREATING THIS AS--TREATING THIS 1637 00:55:31,600 --> 00:55:33,960 AS IF THEY'RE RATIONAL ACTORS 1638 00:55:33,960 --> 00:55:37,080 AND THIS IS JUST AN ANALYTIC 1639 00:55:37,080 --> 00:55:40,120 QUESTION THEY'RE TRYING TO 1640 00:55:40,120 --> 00:55:40,520 ANSWER. 1641 00:55:40,520 --> 00:55:40,840 >> GREAT. 1642 00:55:40,840 --> 00:55:43,200 SO 1 LAST QUESTION, AND --I 1643 00:55:43,200 --> 00:55:45,160 DON'T KNOW IF DAN HAS THOUGHTS 1644 00:55:45,160 --> 00:55:48,200 ON THIS OR JUST YOUR EXPERIENCE 1645 00:55:48,200 --> 00:55:49,320 AS AN INTENSIVIST, MY EXPERIENCE 1646 00:55:49,320 --> 00:55:53,360 HAS BEEN TALKING TO INTENSIVISTS 1647 00:55:53,360 --> 00:55:54,520 WHEN YOU THINK ABOUT WHAT'S 1648 00:55:54,520 --> 00:55:56,080 APPROPRIATE CARE AND WHEN THE 1649 00:55:56,080 --> 00:55:58,560 RISK BENEFIT RATIO IS JUST SO 1650 00:55:58,560 --> 00:56:00,960 OUT OF WHACK THAT IT'S NOT 1651 00:56:00,960 --> 00:56:03,360 APPROPRIATE TO CONTINUE, AT 1652 00:56:03,360 --> 00:56:04,840 LEAST THE INTENSIVISTS I'VE 1653 00:56:04,840 --> 00:56:06,160 INTERACTED WITH IS ONLY AT THE 1654 00:56:06,160 --> 00:56:07,880 NIH SO IT'S A SPECIALIZED GROUP 1655 00:56:07,880 --> 00:56:09,360 BUT MY EXPERIENCE HAS BEEN IF 1656 00:56:09,360 --> 00:56:11,760 YOU LINE THEM ALL UP, THEIR 1657 00:56:11,760 --> 00:56:14,240 OPINIONS ON THAT WILL JUST VARY, 1658 00:56:14,240 --> 00:56:16,480 PRETTY WIDELY, SO WE--WE HAVE 1659 00:56:16,480 --> 00:56:17,640 ETHICS COMMITTEE DISCUSSIONS 1660 00:56:17,640 --> 00:56:19,680 WHERE WE HAVE GIVE THE PATIENT 1661 00:56:19,680 --> 00:56:22,760 WHO'S REALLY, REALLY SICK WIDE 1662 00:56:22,760 --> 00:56:24,040 SPREAD BONY METASTATIC CANCER 1663 00:56:24,040 --> 00:56:27,120 AND YOU ASK, WELL, WHAT ABOUT A 1664 00:56:27,120 --> 00:56:29,200 DNR, SHOULD WE MAKE THIS PERSON 1665 00:56:29,200 --> 00:56:31,800 DNERROR SO SHOULD WE BE WILLING 1666 00:56:31,800 --> 00:56:34,400 TO DO RESUSCITATION IF THEY NEED 1667 00:56:34,400 --> 00:56:36,520 IT AND SOME INTENSISTIVES WILL 1668 00:56:36,520 --> 00:56:38,480 SAY ABSOLUTELY NOT, ALL I'M 1669 00:56:38,480 --> 00:56:39,920 GOING TO DO IS SCRAPE THEIR 1670 00:56:39,920 --> 00:56:42,480 BONES AND HURT THEM MORE AND THE 1671 00:56:42,480 --> 00:56:43,520 CHANCES OF SOMEONE GETTING OUT 1672 00:56:43,520 --> 00:56:45,120 OF THE HOSPITAL ARE EXTREMELY 1673 00:56:45,120 --> 00:56:45,360 LOW. 1674 00:56:45,360 --> 00:56:46,760 OTHERS SAY IF THEY'RE INFORMED, 1675 00:56:46,760 --> 00:57:04,520 AND THEY WANT US TO TRY, MY JOB 1676 00:57:04,520 --> 00:57:04,920 IS TO TRY. 1677 00:57:04,920 --> 00:57:05,840 >> OVER THE COURSE THAT THIS 1678 00:57:05,840 --> 00:57:08,400 INDIVIDUAL WAS IN THE ICU, THEY 1679 00:57:08,400 --> 00:57:10,160 WERE CARED FOR BY MEMBERS OF 1680 00:57:10,160 --> 00:57:13,360 MOST IF NOT ALL OF OUR 1681 00:57:13,360 --> 00:57:14,680 DEPARTMENT, MANY OF WHOM I THINK 1682 00:57:14,680 --> 00:57:15,960 ARE TUNED IN TO TODAY'S 1683 00:57:15,960 --> 00:57:18,160 DISCUSSION AND SO, YES, THERE IS 1684 00:57:18,160 --> 00:57:20,360 NOT ALWAYS, YOU KNOW UNIFORMITY 1685 00:57:20,360 --> 00:57:22,920 IN THE WAY THAT 1 CLINICIAN 1686 00:57:22,920 --> 00:57:23,760 VIEWS THESE RELATIVE TO THE 1687 00:57:23,760 --> 00:57:26,600 OTHER AND I KNOW DOUG PROBABLY 1688 00:57:26,600 --> 00:57:28,920 REFLECTS HIS EXPERIENCES AS 1689 00:57:28,920 --> 00:57:29,200 WELL. 1690 00:57:29,200 --> 00:57:31,400 THE QUESTION IS HOW DO YOU 1691 00:57:31,400 --> 00:57:34,080 MANAGE THAT, HOW DO YOU MITIGATE 1692 00:57:34,080 --> 00:57:36,560 THAT AND I THINK PERHAPS AGAIN, 1693 00:57:36,560 --> 00:57:40,440 WHO YOU ASK MAY DIFFER. 1694 00:57:40,440 --> 00:57:43,320 A LOT OF WHAT DOUG STATED 1695 00:57:43,320 --> 00:57:45,200 RESONATES WITH ME AND IS 1696 00:57:45,200 --> 00:57:45,920 CONSISTENT WITH THE PRACTICE 1697 00:57:45,920 --> 00:57:47,920 THAT I TRY TO ACCOMPLISH IN THE 1698 00:57:47,920 --> 00:57:54,920 ICU WHICH IS TO HAVE, YOU KNOW, 1699 00:57:54,920 --> 00:57:56,120 ITERATIVE AND INTERDISCIPLINARY 1700 00:57:56,120 --> 00:57:57,720 CONVERSATIONS ABOUT THESE THINGS 1701 00:57:57,720 --> 00:58:00,440 TO TRY TO IDENTIFY WHERE THERE 1702 00:58:00,440 --> 00:58:02,400 ARE DIFFERENCES OR 1703 00:58:02,400 --> 00:58:04,720 MISUNDERSTANDINGS OR ALTERED 1704 00:58:04,720 --> 00:58:05,880 PERSPECTIVES, AND THEN, YOU KNOW 1705 00:58:05,880 --> 00:58:07,960 THROUGH THAT PROCESS OF THESE 1706 00:58:07,960 --> 00:58:10,920 ITERATIVE CONVERSATIONS AND 1707 00:58:10,920 --> 00:58:11,760 DISCUSSIONS, AND IMPORTANTLY, 1708 00:58:11,760 --> 00:58:13,840 FIRST AMONG THE PROVIDERS, AND 1709 00:58:13,840 --> 00:58:16,160 THE FULL TEAM OF PROVIDERS, 1710 00:58:16,160 --> 00:58:16,400 RIGHT? 1711 00:58:16,400 --> 00:58:22,240 LIKE WE'RE A TEAM, NURSES, 1712 00:58:22,240 --> 00:58:22,920 THERAPISTS, CLINICIANS, 1713 00:58:22,920 --> 00:58:24,480 PHYSICIANS, DO WAWE CAN TO GET 1714 00:58:24,480 --> 00:58:26,720 ON THE SAME PAGE WITH EACH 1715 00:58:26,720 --> 00:58:30,160 OTHER, TO GET ON THE SAME PAGE 1716 00:58:30,160 --> 00:58:31,720 RCHT IMPORTANTLY FOR US AND ALEX 1717 00:58:31,720 --> 00:58:33,720 IS AWARE OF THIS, THE ICU TEAM 1718 00:58:33,720 --> 00:58:35,720 AND THE PROTOCOL TEAM, THE TEAM 1719 00:58:35,720 --> 00:58:38,120 THAT BROUGHT THAT PERSON THERE 1720 00:58:38,120 --> 00:58:39,480 FOR THEIR PROTOCOL, ITERATIVE 1721 00:58:39,480 --> 00:58:40,600 PROCESS TO WORK OUT OUR STUFF TO 1722 00:58:40,600 --> 00:58:42,840 SAY ARE WE ON THE SAME PAGE AND 1723 00:58:42,840 --> 00:58:44,960 THEN AS A GROUP GO TO THE FAMILY 1724 00:58:44,960 --> 00:58:47,880 ORLET 1725 00:58:47,880 --> 00:58:50,120 ORLET SUR--OR THE PATIENT AND 1726 00:58:50,120 --> 00:58:51,800 HAVE A UNIFIED VOICE AND REFLECT 1727 00:58:51,800 --> 00:58:53,200 THAT OVER TIME SO THAT SOMEWHERE 1728 00:58:53,200 --> 00:59:01,360 IN THAT PROCESS, YOU GET TO A 1729 00:59:01,360 --> 00:59:01,880 REASONABLE APPROACH. 1730 00:59:01,880 --> 00:59:03,240 YOU KNOW SO THAT'S THE BEST I 1731 00:59:03,240 --> 00:59:05,120 CAN GIVE YOU THERE. 1732 00:59:05,120 --> 00:59:05,400 >> THANKS. 1733 00:59:05,400 --> 00:59:06,720 >> THAT'S WHAT WE DO. 1734 00:59:06,720 --> 00:59:07,680 >> YEAH, THAT'S REALLY HELPFUL. 1735 00:59:07,680 --> 00:59:12,160 SO WE'RE OUT OF TIME, DOUG ANY 1736 00:59:12,160 --> 00:59:12,520 LAST THOUGHTS? 1737 00:59:12,520 --> 00:59:13,640 >> I THINK IT WOULD BE GOOD TO 1738 00:59:13,640 --> 00:59:14,600 HEAR WHAT HAPPENED WITH THE CASE 1739 00:59:14,600 --> 00:59:16,000 AND HOW IT PLAYED OUT. 1740 00:59:16,000 --> 00:59:18,800 MANY OF US LIKE TO HEAR THE END 1741 00:59:18,800 --> 00:59:20,640 OF THESE STORIES. 1742 00:59:20,640 --> 00:59:21,120 >> [LAUGHTER] 1743 00:59:21,120 --> 00:59:23,720 SO LET ME, I DON'T KNOW IF ALEX 1744 00:59:23,720 --> 00:59:26,320 WANTS TO--LET ME SAY BEFORE WE 1745 00:59:26,320 --> 00:59:28,160 GIVE THAT QUICKLY THAT I WANT TO 1746 00:59:28,160 --> 00:59:30,400 THANK DOUG, I WANT TO THANK DAN 1747 00:59:30,400 --> 00:59:31,800 AND ALEX, BEING WE CAN'T DO 1748 00:59:31,800 --> 00:59:33,320 THESE WITHOUT THE CLINICIANS 1749 00:59:33,320 --> 00:59:34,840 BEING WILLING TO PRESENT AND 1750 00:59:34,840 --> 00:59:36,120 SORT OF AIR THEIR DIFFICULT 1751 00:59:36,120 --> 00:59:38,040 CASES IN FRONT OF ALL THE REST 1752 00:59:38,040 --> 00:59:40,320 OF US AND SO WE REALLY 1753 00:59:40,320 --> 00:59:40,760 APPRECIATE EVERYBODY'S 1754 00:59:40,760 --> 00:59:41,560 INVOLVEMENT, SO THANKS TO 1755 00:59:41,560 --> 00:59:41,920 EVERYBODY. 1756 00:59:41,920 --> 00:59:43,560 I WILL TRY TO RESPOND TO 1757 00:59:43,560 --> 00:59:45,520 QUESTIONS I HAVEN'T, I DON'T 1758 00:59:45,520 --> 00:59:47,480 KNOW IF HAD A QUICK WRAP UP 1759 00:59:47,480 --> 00:59:48,000 THERE ALEX. 1760 00:59:48,000 --> 00:59:51,400 >> NO, BUT I THINK DAN, DID YOU 1761 00:59:51,400 --> 00:59:52,120 HAVE--MAYBE YOU INITIALLY DID 1762 00:59:52,120 --> 00:59:53,320 BUT I DON'T THINK-- 1763 00:59:53,320 --> 00:59:54,960 >> YEAH, SO THE WRAP UP AND 1764 00:59:54,960 --> 00:59:55,920 DOUG, I'M GLAD YOU BROUGHT IT UP 1765 00:59:55,920 --> 00:59:57,120 AND I WILL TRY TO BE BRIEF 1766 00:59:57,120 --> 00:59:59,960 BECAUSE I KNOW WE'RE A MINUTE 1767 00:59:59,960 --> 01:00:01,640 OVER HERE IS THAT YOU KNOW THERE 1768 01:00:01,640 --> 01:00:02,800 WERE CHALLENGES ABOUT 1769 01:00:02,800 --> 01:00:03,880 WHETHER--SO THE ANSWER IS THAT 1770 01:00:03,880 --> 01:00:05,080 THIS INDIVIDUAL WANTED CARE, 1771 01:00:05,080 --> 01:00:06,720 THEY WANTED TO BE CONTINUE TO BE 1772 01:00:06,720 --> 01:00:08,920 AGGRESSIVE BUT THERE WAS SOME 1773 01:00:08,920 --> 01:00:10,160 CONFUSION BECAUSE TOWARDS THE 1774 01:00:10,160 --> 01:00:13,120 END WHEN SHE WAS SUFFERING, SHE 1775 01:00:13,120 --> 01:00:15,320 ALSO WAS REFUSING PROCEDURES, IT 1776 01:00:15,320 --> 01:00:17,080 ULTIMATELY GOT TO THE POINT 1777 01:00:17,080 --> 01:00:18,360 WHERE IT FELT SHE REALLY WASN'T 1778 01:00:18,360 --> 01:00:20,840 IN A POSITION AND HAD THE 1779 01:00:20,840 --> 01:00:22,120 CAPACITY TO MAKE MEDICAL 1780 01:00:22,120 --> 01:00:23,200 DECISIONS AND ULTIMATELY THOSE 1781 01:00:23,200 --> 01:00:25,800 CONVERSATIONS WERE SORT OF 1782 01:00:25,800 --> 01:00:30,560 ITERATIVELY HAD WITH HER 1783 01:00:30,560 --> 01:00:31,920 SURROGATE DECISION MAKER, HER 1784 01:00:31,920 --> 01:00:33,080 GRANDMOTHER AND OVER TIME IT WAS 1785 01:00:33,080 --> 01:00:34,240 THE IMPRESSION OF THE 1786 01:00:34,240 --> 01:00:35,200 GRANDMOTHER THAT THIS IS NOT 1787 01:00:35,200 --> 01:00:38,480 WHAT THE PATIENT WOULD HAVE 1788 01:00:38,480 --> 01:00:39,120 WANTED FOR HERSELF. 1789 01:00:39,120 --> 01:00:40,520 THAT GIVEN THE LIKELIHOOD OF 1790 01:00:40,520 --> 01:00:42,000 BENEFIT AND THE ONGOING 1791 01:00:42,000 --> 01:00:42,680 SUFFERING AND DIFFICULTIES THAT 1792 01:00:42,680 --> 01:00:44,400 IF THE PATIENT WERE IN THE ROOM 1793 01:00:44,400 --> 01:00:46,280 THAT THAT'S NOT WHAT SHE WOULD 1794 01:00:46,280 --> 01:00:49,120 WANT AND SHE WAS TRANSITIONED TO 1795 01:00:49,120 --> 01:00:53,080 COMFORT CARE AND ULTIMATELY DIED 1796 01:00:53,080 --> 01:00:53,360 THEREAFTER. 1797 01:00:53,360 --> 01:00:53,720 >> ALL RIGHT. 1798 01:00:53,720 --> 01:00:56,280 >> AND WE STILL DON'T KNOW WHAT 1799 01:00:56,280 --> 01:00:57,240 HER DISEASE WAS. 1800 01:00:57,240 --> 01:00:57,480 YEAH. 1801 01:00:57,480 --> 01:00:58,720 >> ALL RIGHT, SO THANK YOU, 1802 01:00:58,720 --> 01:01:00,200 THANKS YOU GUYS VERY MUCH, THIS 1803 01:01:00,200 --> 01:01:02,720 WAS A GREAT SESSION AND FOR 1804 01:01:02,720 --> 01:01:03,960 PEOPLE AROUND, HOPEFULLY SEE YOU 1805 01:01:03,960 --> 01:01:05,120 THE FIRST WEDNESDAY IN APRIL FOR 1806 01:01:05,120 --> 01:01:06,520 THE LAST 1 OF THE SPRING. 1807 01:01:06,520 --> 01:01:08,480 OKAY, THANKS YOU GUYS AND 1808 01:01:08,480 --> 01:01:09,720 BYE-BYE EVERYBODY. 1809 01:01:09,720 --> 01:02:34,480 >> BYE, THANK YOU.