Welcome to the Clinical Center Grand Rounds, a weekly series of educational lectures for physicians and health care professionals broadcast from the Clinical Center at the National Institutes of Health in Bethesda, MD. The NIH Clinical Center is the world's largest hospital totally dedicated to investigational research and leads the global effort in training today's investigators and discovering tomorrow's cures. Learn more by visiting us online https://clinicalcenter.nih.gov >> I'M DAVE WENDLER FROM DEPARTMENT OF BIOETHICS ETHICS GRAND ROUNDS FOCUS ON ACTUAL CONSULTATIONS WE GOT AND WE HAVE A SERVICE 24/7 IF YOU HAVE AN ETHICAL ISSUE YOU CAN CALL THE DEPARTMENT OR GET THE PAGE OPERATOR TO GET THE BIOETHICS PERSON ON CALL. AS IN PAST, THIS IS AN ACTUAL CASE BUT AS I SAID BEFORE THE GOAL ISN'T TO DO A POST PORE -- POST MORE TEM ON THE CASE. WE WANT TO TALK ABOUT HOW TO HANDLE THE ETHICAL ISSUE IS WHAT TO DO IN A SITUATION WHERE YOU HAVE REASON TO BELIEVE A SURROGATE IS MAKING DECISIONS THAT ARE MAYBE INCONSISTENT OR CONTRADICTORY WITH THE PREFERENCES OF THE PATIENT FOR WHOM THEY'RE MAKING DECISIONS. THE WITNESS INCLUDES A JEHOVAH WITNESS AND BLOOD TRANSFUSION AND I HOPE TO NOT TALK ABOUT JEHOVAH WITNESSES OR RELIGIOUS BELIEF. IT TURNS OUT THE NEXT ETHICS GRAND ROUNDS APRIL 1 WILL BE ON RELIGIOUS BELIEF AND WHAT TO DO WHEN YOU THINK SOMEONE'S RELIGIOUS BELIEF MAY BE LEADING THEM TO MAKING MEDICAL DECISIONS INCONSISTENT WITH BEST MEDICAL CARE. APRIL 3 I HOPE YOU CAN MAKE IT BUT I'D LIKE TO KEEP THAT TO THE SIDE AND FOCUS THIS SESSION ON SURROGATES WHERE DECISIONS ARE INDECISION WITH MEDICAL PURPOSE AND IT COULD BE FOR BLOOD TRANSFUSION OR INTUBATION. THE QUESTION IS HOW TO MAKE DECISIONS FOR PEOPLE WHO CAN'T MAKE DECISIONS FOR THEMSELVES? THIS IS AN ISSUE THE COURTS HAVE BEEN FACING THE LAST 1,000 YEARS AND IF THEY CAN'T MAKE A DECISION THEMSELVES YOU WORRY THEY'LL BE TAKEN ADVANTAGE OF. THE LEGAL STANDARD IN ENGLISH LAW MAKE DECISIONS BASED ON THE BEST INTEREST OF THE PERSON IN QUESTION. THIS WAS THE STANDARD IN GREAT BRITAIN WHEN YOU HAD SOMEBODY WHO LOST CAPACITY AND LEFT MONEY. THE RULE WAS THE MONEY WOULD ONLY BE USED FOR DOING THINGS IN THE BEST INTEREST OF THE SPECIFIC PERSON. THAT WAS SUPPOSED TO BE A PROTECTION FOR THAT PERSON. THAT CHANGED LATE 1700s AND 1800s THERE WAS A MR. HEINZ WHO WAS VERY RICH WITH RELATIVES AND HE LOST THE CAPACITY TO MAKE HIS OWN DECISIONS AND THE COURT WOUND UP IN CONTROL OF HIS ESTATE AND THE MONEY AND THE QUESTION WAS WHAT TO DO WITH HIS MONEY. INITIALLY THE COURT USED THAT TO TAKE CARE OF HIM. HOWEVER, HE FOR DECADES HAD BEEN TAKING CARE OF HIS ENTIRE LARGE FAMILY AND THAT MONEY GOT CUT OFF FROM THEM AND THEY STARTED HAVING TROUBLE HAVING FOOD TO EAT AND COULDN'T GO TO COLLEGE AND IT'S A NATURAL ASSUMPTION MR. HIND WOULD RATHER HAVE HIS MONEY GO TO NEXT OF KIN RATHER THAN SENT OUT IN THE WORLD AS BEGGARS. AS FAR AS WE CAN TELL, THAT'S THE FIRST DESCRIPTION OF WHAT'S BEEN CALLED THE SUBSTITUTE OF JUDGMENT STANDARD WHICH IS NOW THE REIGNING ETHICAL AND LEGAL STANDARD IN THE UNITED STATES AND WORLD WHERE IT SAYS IF YOU HAVE SOMEBODY THAT CAN'T MAKE DECISIONS FOR THEMSELVES, YOU DON'T JUST LOOK AT WHAT'S IN THE BEST INTEREST BUT WHAT DECISION THEY WOULD HAVE MADE IF THEY WOULD HAVE MADE THE DESTINATION FOR THEMSELVES. THAT'S CALLED SUBSTITUTE OF JUDGMENT AND THE STANDARD WE'RE SUPPOSED TO BE USING. THE QUESTION IS WHAT DO WE DO WHEN WE THINK A SURROGATE ISN'T FOLLOWING THAT STANDARD. FOR THE CASE WE HAVE SAFIR KADRI AND HE IS STEPPING IN FOR SOMEONE ELSE AND IS AN INFECTIOUS DISEASE FISSION AND ATTENDING IN THE -- PHYSICIAN IN THE ATTENDING ICU AND DOES BIG DATA IN THE INTENSIVE CARE SETTING. THANK YOU FOR COMING. >> GOOD AFTERNOON, EVERYONE AND THANKS FOR THE INTRODUCTION. THE CASE I'M GOING TO PRESENT OCCURRED ABOUT FIVE OR SIX YEARS AGO. WHEN I GOT THIS CALL ASKING WHETHER I'D BE ABLE TO PRESENT THIS AND THE NAME WAS MENTIONED I IMMEDIATELY REMEMBERED THE CASE AND THE SCENARIO AND THE PROBLEM. THAT DOESN'T HAPPEN ALL THE TIME BUT CLEARLY THIS CASE LEFT A LASTING MEMORY IN MY MIND AND PARTICULARLY BECAUSE OF THE ETHICAL CONSIDERATIONS WHICH I THINK ARE INTERESTING AND WORTH DISCUSSING. ALSO FOR A TRAINEE AT THE TIME LIKE MYSELF WHO WAS A FELLOW IN ICU THE SCENARIO WAS A GOOD EDUCATIONAL POINT FOR ME. IT WAS A GOOD DEMONSTRATION OF THE VALUE OF BIOETHICS CONSULTATION AND APPRECIATE OF DAVE AND HIS TEAM FOR WALKING THE TEAM THROUGH THE MEDICAL, LEGAL AND ETHICAL AND FAITH-BASED NUANCES THAT WERE CARDINAL TO THIS CASE. THE TITLE IS HOW DO CLINICIANS HANDLE THE CONFLICTS BETWEEN SURROGATES. I HAVE NO DISCLOSURES AND WE'RE TRYING TO EMPHASIZE THE ETHICAL ASPECTS AND CERTAIN DETAILS HAVE BEEN INTENTIONALLY CHANGED TO PROTECT PATIENT PRIVACY. I WILL EXPLAIN THE CONCERN CONCERNING WHETHER THE PATIENT SHOULD BE GIVEN A TRANSFUSION OR NOT AND DESCRIBE THE ETHICAL CHALLENGE THAT ARISES WHEN SURROGATE DECISIONS MAY CONFLICT WITH PATIENT PREFERENCES. SO OUR PATIENT IS A 27-YEAR-OLD GENTLEMAN. A JEHOVAH'S WITNESS AND HAS BEEN A RESEARCH PARTICIPANT FOR SEVERAL YEARS AND UNDERGOES CLINICALLY INDICATED SURGERY AT THE CENTER TO REMOVE A TUMOR. THE SURGERY'S SUCCESSFUL AND HIS PROGNOSIS IS EXCELLENT. IN PARTICULAR, HE MAY NEED SURGERY AGAIN AT SOME POINT AND HE'S EXPECTED TO HAVE A NORMAL LIFE SPAN. FOLLOWING THE SURGERY, ACTUALLY WHEN HE WAS WHEELED OUT OF THE ICU AND CAME TO US, HE EXPERIENCED SIGNIFICANT NASAL BLEEDING AND CONTROVERSIED TO THE IU FOR -- TRANSFERRED TO ICU AND HIS VALUE DROPPED TO 5 AND WHERE NORMAL WAS HIGHER AND HE DROPPED ACUTELY WHICH IS AN INDICATION OF SEVERE BLEEDING ESPECIALLY WHEN IT'S OBVIOUS. HE WAS ALREADY INTUBATED BECAUSE HE HAD RESPIRATORY FAILURE INTO SURGERY AND PLACED ON HIGH DOSES OF PAIN MEDICATION LEAVING HIM UNABLE TO MAKE DECISION. IN THE VIEW OF THE TEAM, THE BEST MEDICAL OPTION FOR THIS PATIENT WAS A BLOOD TRANSFUSION AND THIS WAS AFTER ALL OTHER NON-TRANSFUSION RELATED PROCEDURES AND INTERVENTIONS HAD ALREADY BEEN INTRODUCED TO TRY TO REDUCE BLEEDING. THE TEAM ASKED WOULD THE PATIENT WANT A BLOOD TRANSFUSION AND THEY DESIGNATE THE WIFE AS THE PRIMARY SURROGATE DECISION MAKER AND DESIGNATED HIS BROTHER AS THE ALTERNATE SURROGATE. HIS ADVANCED DIRECTORS SAID HE WANTED ALL LIFE-SAVING MEASURES. THESE FORMS TYPICALLY HAVE A SPACE TO PUT IN CERTAIN EXCLUSION OR EXCEPTIONS AND THERE WAS A CONSPICUOUS ABSENCE OF ANY INFORMATION THERE AND THE AREA WAS BLACK AND NO EXCLUSIONS INCLUDING NO EXCLUSIONS FOR BLOOD TRANSFUSION. THIS PATIENT HAD PREVIOUSLY RECEIVED BLOOD TRANSFUSIONS FOLLOWING A SIGNIFICANT POST-OPERATIVE BLEEDING EVENT AND AFTERWARD INDICATED TO THE TEAM HE WAS GLAD HE RECEIVED THE BLOOD. HIS BROTHER WHO IS THE ALTERNATIVE DPA, STATES THE PATIENT WANTED TO RECEIVE BLOOD PRODUC PRODUC PRODUCTS IN LIFE-THREATENING SITUATIONS AND THE WIFE IS MORE RELIGIOUS. THE NURSES INDICATE WHEN THE PATIENT WOULD STATE HIS RELUCTANCE TO RECEIVE BLOOD PRODUCTS AND WHEN THE WIFE APPRECIATE THE PATIENT ADVISED A FELLOW HE DID NOT WANT TO RECEIVE BLOOD. THIS WAS WHILE HE WAS ON HIGH LEVEL NARCOTICS BUT STILL FOLLOWING COMMANDS AND SIMPLE INSTRUCTIONS. THE WIFE IS CALLED TO EXPLAIN THE CIRCUMSTANCES. THE STAFF EXPLAINS ITS RECOMMENDATION THE PATIENT SHOULD RECEIVE A BLOOD TRANSFUSION WITHOUT WHICH WE BELIEVE HE WOULD LOSE HIS LIFE. THE PATIENT'S WIFE STATES THAT HE WOULD NOT WANT TO RECEIVE THE BLOOD PRODUCTS EVEN IN LIFE-THREATENING SITUATIONS. SHE INSTRUCTS THE TEAM NOT TO GIVE HIM THE BLOOD TRANSFUSION. WE WERE UNSURE ABOUT WHAT WE SHOULD DO. SO WE CALLED I BIOETHICS CONSULTATION TO DISCUSS THE CASE. THE THREE QUESTIONS AT HAND WERE, SHOULD THE TEAM ACCEPT THE WIFE'S DECISION POINT BLANK OR SHOULD THE TEAM DISCUSS FURTHER WITH THE WIFE AND ASSESS WHETHER HER DECISION IS CONSISTENT WITH pSHOULD THEY DO IF THE WIFE IS LIKELY MAKING DECISIONS CONTRARY TO THE PATIENT'S PREFERENCES. THANK YOU. >> SO HOLD OFF ON THE ETHICAL ANALYSIS AND DOES ANYONE HAVE QUESTIONS FROM SAMIR ON THE MEDICAL FACT TO HAVE USEFUL WHEN WE THINK ETHICALLY HOW THESE KINDS OF CASES SHOULD BE HANDLED? ANY MORE MEDICINE? AND SO JUST AS A REMINDER, I SHOULD HAVE SAID IN THE BEGINNING, THESE SESSIONS ARE ALL STREAMED ONLINE AND FOR THE PEOPLE WATCHING ONLINE TO HEAR IT, QUESTIONS NEED TO GO IN THE MIC SO IF YOU CAN GET TO ONE OF THE AISLE MIC DOS -- MICS BEFORE YOU ASK THE QUESTION. >> WAS THE PREVIOUS QUESTION DONE AT THE NIH OR SOMEWHERE ELSE? >> TWO CLARIFYING QUESTIONS WHAT WAS THE TIME SENSITIVITY IN TERMS OF THE WINDOW THE TEAM HAD IN TERMS OF MAKING A DECISION WITH WHICH WHAT TO DO AND SECOND IS YOU MENTIONED HE WAS ON PAIN MEDICATION. WAS HE AT ALL WAS IT POSSIBLE TO DIAL DOWN THE MEDICATION. >> TO TACKLE THE FIRST QUESTION, I THINK WE HAD SOMEWHERE BETWEEN MINUTES AND HOURS. THIS WAS PROFUSE ARTERIAL BLEEDING AND THE HEMOGLOBIN DROPPED TO HALF HOURS AGO SO THAT'S A DIRE EMERGENCY. AND THE WIFE WAS NOT ACTUALLY AT THE HOSPITAL. SHE WAS IN ANOTHER STATE SO THESE DISCUSSIONS WERE MADE OVER THE PHONE. THE DECISIONS NEEDED TO BE MADE IMMEDIATELY. THEN TO ANSWER YOUR OTHER QUESTION, HE WAS AT BASELINE A CHRONIC OPIATE USER BECAUSE HE HAD CHRONIC PAIN ISSUES SO THERE WAS SOME DEGREE OF TOLERANCE AND WAS ON WALKING DOSES TO KEEP HIM ASLEEP ON THE VENTILATOR. THE PROBLEM WAS THAT IT WAS NOT SAFE TO WAKE HIM UP IN THIS SCENARIO. WE WERE TRYING TO TACKLE THE BLEEDING AROUND THE NOSE AND HIS MOUTH. >> THIS COULD BE VERY HELPFUL FOR ME. IN CASES WITH PREFERENCES TO NOT USE BLOOD PRODUCTS IF IT'S AN ELECTIVE OR NOT NECESSARILY ACUTE OPERATION YOU CAN HAVE AVAILABLE IN-HOUSE AN ALTERNATE BLOOD PRODUCT FOR THE PURPOSE OF PREVENTING HYPERTENSION AND THIS WAS FIVE YEARS OR SO AGO. SO BOTH THOSE WOULD HAVE BEEN AVAILABLE THEN AND NOT DOING THAT AHEAD OF TIME MIGHT ACTUALLY ADD TO THE ETHICAL DILEMMAS OF A HOSPITAL NOT PREPARING FOR THAT. WORLD -- COULD YOU STATE IF THEY WERE OFFERED AND DECLINED BY THE PATIENT? >> EXCELLENT QUESTION. SO TO GO INTO MORE DETAIL ABOUT THE CASE, WHILE THE PATIENT WAS BEING PREPPED FOR ELECTIVE TURNERY DURING THE PRE-OPERATIVE EVALUATION THE PATIENT SAID THEY WOULD WANT ALL BLOOD PRODUCTS IN AN EMERGENCY SITUATION. GIVEN WE HAVE THAT INFORMATION, THOSE STEPS WERE NOT TAKEN. THE OTHER THING IS FOR PATIENT WHO'S HAVE THESE RESTRICTIONS IT'S REALLY A SPECTRUM. NOT PATIENTS ARE NOT EVEN OKAY WITH AUTOTRANSFUSION PREPARING AND NOT EVEN WILLING TO TAKE THEIR OWN BLOOD STORED EARLIER. WHAT SOME ARE AMENABLE TO IN THIS SITUATION IS THE USE OF WHAT WE CALL CELL SAVERS. SO INTRAOPERATIVELY AND IF YOU HAVE THE ABILITY TO COLLECT THE BLOOD THAT WAS LOST, WASH IT AND INTRODUCE IT BACK INTO THE PATIENT, THAT'S SOMETHING THEY'RE AMENABLE TO. THIS IS SOMETHING AT A FUTURE DATE WE LEARNED ABOUT THE PATIENT HE WAS OKAY WITH CELL-SAFER -- CELL-SAVER DEVICE AND WE DIDN'T HAVE THAT BECAUSE WE HAD CONSENT FROM SEVERAL DAYS AGO HE WOULD ACCEPT THE BLOOD PRODUCTS. >> ONE MORE QUESTION. >> THERE'S A BBC PROGRAM CALLED HEART ABOUT A HEART SURGEON WHO ENDS UP IN RURAL AUSTRALIA AND HE HAD THE EXACT SAME CASE. HE WAS NOT PERMITTED TO OPERATE HIMSELF BECAUSE THAT WAS WHY HE WAS OUT IN THE WORLD ASSIGNMENT BECAUSE HE'D DONE SOME THINGS WRONG. THE PATIENT WAS A JEHOVAH'S WITNESS AND WHAT HE DID IS INSTRUCTED THE NURSE TO GIVE HIM AN ALTERNATIVE TO BLOOD WHICH DIDN'T DO ANYTHING WITH THE HEMATOCRIT BUT DID GIVE HIM ENOUGH FLUIDS IN HIS BODY AND HE THEN WAS ABLE WITH THE NURSE TO CLAMP THE VESSEL THAT WAS BLEEDING. NOW, I HAVE NO IDEA IF THAT'S EVEN A POSSIBILITY BUT YOU MIGHT WANT TO LOOK AT IT FOR A LAUGH. >> THANK YOU FOR THAT. JUST TO BE SURE, ALL STEPS WERE TAKEN SHORT OF BLOOD TRANSFUSION AND THAT INCLUDED FLUID RESUSCITATION GIVING BACK VOLUME NOT IN THE FORM OF BLOOD BUT SALINE. THANK YOU, SAMIR. SO TO HELP US THINK WITH THE CASE AND TO ANSWER ALL THESE QUESTIONS FOR US IS DAN BRUDNEY AND WE GET TO GIVE HIM A HARD TIME AS HE SPENT TIME WITH US AS A VISITING SCHOLAR. HE'S A PROFESSOR OF PHILOSOPHY AND AT THE MACLEAN CENTER FOR ETHICS AT THE UNIVERSITY OF CHICAGO AND IS A GUY THINKING ABOUT SURROGATE DECISION MAKING FOR A LONG TIME AND I KNOW THROUGH DISCUSSIONS WITH HIM WHEN HE WAS VISITING WITH US US LAST YEAR HE'S BEEN THINKING ABOUT EXACTLY THIS KIND OF CASE OF HOW WE HANDLE SURROGATES IN THESE CASES. WELCOME, DAN. >> THANKS SO MUCH FOR THAT AND INVITING ME BACK. IT'S GOOD TO BE BACK HERE. I'M NOT GOING TO SPEAK FOR VERY LONG BECAUSE I WANT TO LEAVE PLENTY OF TIME FOR QUESTIONS. WHAT I'M GOING TO DO IS TALK A LITTLE BIT ABOUT A COUPLE OF THE VALUES THAT ARE BEHIND ONE WAY OF THINKING ABOUT WHY WE HAVE SURROGATES MAKE DECISIONS AND WHAT THEY'RE SUPPOSED TO DO. THEN DESCRIBE WHAT KIND OF CASE THIS IS BECAUSE THE QUESTION WE'RE ASKING PIVOTS, IT SEEMS TO ME ON THE KIND OF CASE THIS IS AND WHAT THE SURROGATE'S SUPPOSED TO DO IN THIS CASE. IT MAY BE HELPFUL BY START DRAWING A PARALLEL BETWEEN THE SURROGATE AND ANOTHER FORM OF REPRESENTATIONS. IT MAY BE USEFUL TO THINK OF THE IT AS THE PATIENT'S REPRESENTATIVE AND WE HAVE A WHOLE FIELD OF REPRESENTATION IN THE POLITICAL THEORY. IN THAT AREA THERE'S A STANDARD DISTINCTION THAT'S BEEN MADE FOR MANY CENTURIES BETWEEN THE REPRESENTATIVE AND A DELEGATE AND THE REPRESENTATIVE AS A TRUSTEE. WHEN THE REPRESENTATIVE IS A DELEGATE THEY'RE SUPPOSED TO DO WHAT THE REPRESENTATIVE WANTS THEM TO DO. SHE'S NOT THINKING FOR HERSELF, SHE'S A MOUTHPIECE FOR THE REPRESENTATIVE PERSON. WHEN SHE'S A TRUSTEE, SHE'S SUPPOSED TO DO WHAT SHE THINKS IS BEST TO DO AND EVEN IF THE REPRESENTED PERSON DOESN'T WANT THAT DONE, TOO BAD. HER JOB IS TO USE HER BEST JUDGMENT IN WHAT'S BEST FOR THE CASE AT HAND. THE REASON YOU MAY THINK THAT POLITICAL PHILOSOPHY IS ON THE RIGHT HAND AND THE REPRESENTATIVE SHOULD BE A DELEGATE, IS TWOFOLD. ONE, WE TEND TO THINK VOTERS PRETTY MUCH KNOW WHAT'S BEST FOR THEM AND SO -- >> SORRY FOR THE INTERRUPTION IS FROM YOUR SPONSOR. >> CONTENT IS GREAT BUT WE DON'T HAVE THE MIC ON IN A WAY PEOPLE CAN HEAR. SORRY. >> SO THE REASON WE SOMETIMES WANT THE CONGRESS PERSON TO BE A DELEGATE IS THE VOTERS KNOW WHAT'S BEST FOR THEM AND THEY'VE ELECTED HER TO DO WHAT THEY WANT DONE. BUT WE ALSO THINK THAT THE VERY IDEA OF DEMOCRATIC THEORY IS PEOPLE SHOULD BE SUBJECT TO THINGS THEY HAVE THEMSELVES CHOSEN OUTSIDE OF WHAT'S BEST FOR THEM BUT THE EXERCISE OF THEIR WILL IS WHAT MAKES COERCION ACTUALLY MORALLY ILLEGITIMATE. IF WE MOVE TO THE BEDSIDE CONTEXT AND THINK OF THE SURROGATE, SOMETIMES THE SURROGATE IS SUPPOSED TO BE A DELEGATE IF THERE'S A DISTRICTIVE THAT'S SUFFICIENTLY CLEAR OR ANOTHER INSTRUMENT THAT'S CLEAR AND ANOTHER WAY OF THINKING OF THIS IS SIMPLY TO DO THAT AND TO BE IN EFFECT THE PATIENT'S DELEGATE. SOMETIMES OF COURSE THERE ISN'T THAT KIND OF CLARITY AND IF WE MOVE DOWN THE STANDARD DECISION TREE WE GET TO THE POINT WHERE THE SURROGATE IS SUPPOSED TO DECIDE WHAT'S IN THE PATIENT'S BEST INTEREST USING HER OWN JUDGMENT. THEY'RE THE PATIENT. THE SURROGATE IS FUNCTIONING AS A TRUSTEE. SO ONE WAY TO THINK OF ANY GIVEN CASE IS WHAT'S THE SURROGATE'S JOB. HOW DO WE DESCRIBE THE ROLE THE SURROGATE'S PLAYING IN A GIVEN CASE? YOU MAY HAVE NOTICED IS THE ROLE OF THE SURROGATE AND SUBSTITUTIVE JUDGMENT AND ASKING WHAT WOULD THE PATIENT WANT? THAT HAS NO PARALLEL IN DEMOCRATIC THEORY. THERE'S NO MOMENT IN WHICH REPRESENTATIVES ARE SUPPOSED TO ASK THAT QUESTION AND REASON WHY IT'S NOT THERE AND REASON WHY IT EXISTS AT THE BEDSIDE. WE CAN GO INTO THAT IN THE Q&A IF YOU WANT BUT I DON'T THINK THIS IS A CASE OF SUBSTITUTIVE JUDGMENT. THEREFORE THE RATHER MESSY MORAL PHILOSOPHY UNDERSTANDING WHY SUBSTITUTIVE JUDGMENT IN THE SENSE OF ANSWERING WHAT WOULD THE PATIENT WANT QUESTION MIGHT MAKE SENSE IN SOME CONTEXT. WHAT I WANT TO DO NOW THOUGH IS TO NOTE THE SAME IDEAS THAT MAKE IT PLAUSIBLE TO THINK SOMETIMES YOUR CONGRESS PERSON SHOULD FUNCTION AS A DELEGATE, AT THE BEDSIDE SOMETIMES WE THINK THE SURROGATE SHOULD FUNCTION AS THE EFFECTIVE DELEGATE. THERE'S FIRST THE THOUGHT THE GENERALLY WE THINK KNOWS WHAT'S BEST FOR HIM OR HER. CA KNOWS WHAT'S BEST FOR HIM. IF OUR INTEREST IS IN WHAT'S DOING BEST FOR CA AND WANT THINGS TO COME OUT WELL FOR CA, WE SHOULD LISTEN TO HIM AND THEREFORE SO SHOULD THE SURROGATE. THE CAVEAT, IS PATIENTS GENERALLY KNOW WHAT'S BEST FOR THEM BUT SOMETIMES DON'T. AS AN EXAMPLE, I'M LATE FOR LUNCH AND YOU WANT TO ORDER FOR ME AND A SAID ORDER ME THE BACON DOUBLE CHEESE BURGER, YOU PROBABLY SHOULD DO THAT. I PROBABLY KNOW WHAT I'LL ENJOY FOR LUNCH AND IF YOU WANT ME TO ENJOY MY LUNCH YOU'LL ORDER THE DOUBLE BACON CHEESEBURGER. HERE'S THE CAVEAT, ARE THERE ANY CARDIOLOGISTS HERE? IF MY FRIEND SAY CARDIOLOGIST SHE MIGHT SAY, NO, DAN DOESN'T KNOW WHAT'S BEST FOR HIM SO IT'S TIME FOR A SALAD. SO THAT SOMETIMES OF COURSE WILL HAPPEN AT THE BEDSIDE YOU WILL THINK THE PATIENT DOESN'T KNOW WHAT IS BEST FOR HIM. THAT'S WHERE IT'S IMPORTANT THE OTHER VALUE COMES IN. VALUE COMES IN FROM VERY DIFFERENT TRADITION MORAL AND PHILOSOPHICAL. IT'S NOT TIED TO THE CONSEQUENCES IT'S TIED TO THE THOUGHT THE PATIENT HAS A WILL AND EXERCISE HIS WILL AND HAVE HIS WILL NOT OVERRIDDEN. ONCE FINDS THIS IN VARIOUS PLACES IN THE HISTORY OF PHILOSOPHY. ONE PLACE IS IN A BOOK CALLED BEST OF GROUNDWORK IN THE MET PHYSICS OF MORALS WHERE HE TALKS ABOUT HOW WHAT DISTINGUISHES HUMAN BEINGS FROM ANIMALS IS WE HAVE A WILL. WE CAN MAKE CHOICE. AND THE VIEW IS THAT IT WOULD BE WRONG TO OVERRIDE A PERSON'S WILL. THIS IS A THOUGHT YOU FIND IN THE SECOND TREAT IS OF GOVERNMENT WHEN HE SAID WE'RE ALL FREE AND NOT BORN TO SUBJECT OF ANYONE ELSE'S WILL. I THINK THE BEST FORMULATION COMES FROM THE THEME SONG OF A SHOW MY KIDS LIKED TO WATCH MALCOLM IN THE MIDDLE WHICH GOES, YOU'RE NOT THE BOSS OF ME. NOW, THOSE TWO THOUGHTS, PATIENTS KNOW BEST AND TWO, PATIENTS HAVE A WILL, JOINTLY INTO PLACES WHEN THEY OBTAIN, IT MAKES SENSE FOR THE SURROGATE TO BE A DELEGATE AND DO AS THE PATIENT SAYS. SO NOW, WHAT WE WANT TO DO IS THINK ABOUT THIS CASE. NOW, IN THIS CASE WE DON'T HAVE A CASE OF SUBSTITUTIVE JUDGMENT WHERE WE DON'T KNOW WHAT THE PATIENT WANTS AND THAT'S WHY WE'RE SUPPOSED TO ASK THE HYPOTHETICAL QUESTION. NOT THE QUESTION, WHAT DID THE PATIENT ACTUALLY CHOOSE BUT WHAT WOULD THE PATIENT HYPOTHETICALLY CHOOSE. I THINK THIS IS A CASE ANALOGOUS TO THE CONTRACT. A CONTRACT IS TO A PERSON'S WILL BUT IT MAY BE OBSCURE AND VAGUE AND YOU MAY NEED TO INTERPRET IT. WE HAVE A LOT OF THE INSTANCES OF THE CA'S WILL. LET ME MENTION THEM. HE ACCEPTED A TRANSFUSION IN THE PAST. THERE'S AN ADVANCED DIRECTIVE ALL MEASURES SHOULD BE TAKEN AND NO EXCLUSION FOR BLOOD PRODUCT. THE PATIENT'S BROTHER SAID THE PATIENT WANTS BLOOD PRODUCTS SIMILAR TO THE SAME KIND OF CONVERSATION. IT'S TRUE WE HAVE ANOTHER EXERCISE OF THE WILL IN HIS WIFE'S PRESENCE THE PATIENT EXPRESSES RELUCTANCE TO ACCEPT BLOOD PRODUCTS AND WOULD NOT WANT WLOOD -- BLOOD PRODUCTS. THAT'S ASKING THE WHAT WOULD, NOT WHAT DID THE PATIENT CHOOSE QUESTION. SO I'LL IGNORE THAT. SO THE WAY I'LL CONCEIVE OF THIS, WHAT WE'RE ASKING IS IT LOOKS AS IF CA HAS EXERCISED HIS WILL A LOT. WE WANT THE CONTENT AND HAVE DATA FOR THAT SUCH AS FOR THE CONTRACT THERE'S EXERCISE FOR THE WILL BUT IF IT'S OBSCURE WE WANT TO LOOK AROUND TO SEE HOW BEST TO INTERPRET IT. NOW, THIS CASE COULD BE AN EASIER ONE THAN IT IS. FOR INSTANCE, IF WE DIDN'T HAVE THAT MOMENT OR THOSE MOMENTS WHERE CA IN THE PRESENCE OF HIS WIFE EXPRESSED HIS REFUSAL TO ACCEPT BLOOD PRODUCTS. IF WE DIDN'T HAVE THAT, ALL THE EVIDENCE WOULD END UP WITH A TRANSFUSION. IN THAT CASE, WE HAVE TO ASK IF IF HIS WILL IS CONSTRAINED IN THE CONTEXT AND IS WHAT HE IS SAYING ACCURATE EXPRESSION OF HIS WILL AND EVEN IF IT IS, WE NEED TO BALANCE THAT EXPRESSION OF HIS WILL AGAINST THE OTHERS INCLUDING FOR INSTANCE, WE NOW LEARNED ANOTHER EXPRESSION OF HIS WILL IN HIS SIGNED CONSENT TO HAVE BLOOD PRODUCTS. IT SEEMS LIKE WE HAVE WHAT TO PUT IN LEGAL TERMS A PREPONDERANCE OF THE EVIDENCE THAT CA WANTS BLOOD PRODUCTS. IT'S NOT A COMPLETE SLAM DUNK BECAUSE HE DID EXPRESS RELUCTANCE BUT IF WE LOOK AT WHERE THE BALANCE LIES I THINK IT'S FAIRLY CLEAR. IT MAY NOT BE CLEAR. THE WAY I'M CONCEPTUALIZING THIS YOU CAN IMAGINE HE HADN'T SAID THOSE THINGS AS MUCH OR NOT THAT HE WOULD WANT BLOOD PRODUCTS BUT HE TOLD ME MULTIPLE TIMES THAT HE NEVER WANTS BLOOD PRODUCTS. SO SHE'S SAYING, THIS IS WHAT HE SAID. THAT WOULD BE MORE COMPLICATED THEN WE'D HAVE MORE CONFLICT IN THE EVIDENCE TO WHAT HE'S ACTUALLY TOLD US TO DO. AND THAT MIGHT WARRANT FURTHER INVESTIGATION TALKING TO PEOPLE WHO HAVE TAKEN CARE OF HIM TO FIND OUT MORE OF WHAT HE ACTUALLY SAID. IN THIS CASE, I THINK IN FACT, HOWEVER, IT'S FAIRLY CLEAR HE WANTS BLOOD PRODUCTS AND THEREFORE THOUGH I DON'T ENVY CLINICIANS TRYING TO EXPLAIN THIS TO THE SURROGATE AND OVERRIDE WHAT SHE HAS DECIDED. I THINK THE RIGHT THING TO DO HERE WOULD TO BE GIVE THE BLOOD PRODUCTS. THANK YOU. [APPLAUSE] >> QUESTIONS FOR DAN? EVERYONE'S CONVINCED? >> I HAVE A QUESTION FOR SAMIR. AT THE END OF SAMIR'S PRESENTATION YOU SAID HE ACTUALLY SIGNED A BLOOD CONSENT, CORRECT? AND FOR OUR EXPERT, WAS IT EVEN NECESSARY TO TALK TO THE WIFE? HE SIGNED A CONCEPT. WOULD YOU NEED TO HAVE ASKED THE WIFE? WHAT WAS THE ETHICAL QUESTION? >> PRESUMABLY YOU'D WANT TO TALK TO THE SURROGATE DECISION MAKER WHEN THE PATIENT NO LONGER HAS CAPACITY. IT WOULD BE LOVELY IF THINGS LINED UP SO THE WIFE AGREED. YES, I THINK MORALLY SPEAKING, YOU'RE GOING THROUGH THE MOTIONS IN A SENSE THAT IF YOU HAVE ENOUGH CLARITY ABOUT WHAT THE PATIENT HAS IN FACT SAID HE WANTS, THAT'S HOW THE DECISION SHOULD BE MADE. >> SO IF I WANT TO FOLLOW-UP, IF HE'D NOT BEEN JEHOVAH'S WITNESS HE'D SIGNED CONSENT FOR SURGERY AND BLOOD WHO TWO DAYS AFTER OR RIGHT AFTER THEY NEEDED BLOOD, WOULD YOU CALL A SURROGATE DECISION MAKER? YOU WOULDN'T FOR ANTIBIOTIC, YOU WOULD JUST GIVE IT, RIGHT? I DON'T KNOW THE ANSWER. WOULD YOU CALL A FAMILY MEMBER AND SAY WE NEED TO GIVE HIM BLOOD. >> NOT IF WE HAD A CONSENT. WE WOULD HAVE GONE AHEAD AND DONE IT. THIS TIME WE HAD A LOT OF EVIDENCE TO SUGGEST IT WAS MORE CLEAR THAN THAT. I TRIED TO NOT GIVE YOU TOO MUCH DETAIL INITIALLY BUT THE COMPLICATING ASPECT WAS A DAY OR TWO PRIOR TO THE EVENT OF BLEEDING WHILE ON THE VENTILATOR AND MEDICATIONS HE WAS STILL RESPONDING AND NODDING APPROPRIATELY AND IN THAT SETTING IN THE PRESENCE OF HIS WIFE THERE'S A CONSENT BASED ON HIS INDICATION AND HER SIGNATURE, HE DOES NOT WANT IT. >> I THINK IT'S A GREAT QUESTION. I WANT TO KEEP IT GOING FOR A SECOND AND SEE WHAT YOUR THOUGHT IS ON A CASE LIKE THIS. TAKE A CASE WHERE YOU GET AS CLEAR AN EXPRESSION OF AN INDIVIDUAL'S WILL AS YOU POSSIBLY CAN. I WANT THE SURGERY. I WANT TO STAY ALIVE. I WANT TO GO TO COLLEGE. I WANT TO SEE MY GRAND KIDS. TELLS MULTIPLE PEOPLE ON MULTIPLE OCCASION. NOW THE PERSON HAS THE SURGERY AND UNEXPECTEDLY THEY HAVE A BLEED IN THEIR BRAIN SO NOW THEY'RE INCAPACITATED AND YOU HAVE TO DECIDE HOW TO START TAKING CARE OF THEM. AT WHAT POINT DO YOU INVOLVE THE SURROGATE AND WHAT ROLE AND POWER AND AUTHORITY DOES THE SURROGATE HAVE OR SAY, LOOK, WE TALKED TO THIS GUY 50 TIMES. HE WANTS US TO KEEP HIM ALIVE SO WE YOU HERE TO HOLD HIS HAND BUT YOU DON'T GET TO MAKE DECISIONS WE KNOW WHAT HE WANTS AND IF YOU HAVE A SURROGATE THAT DOESN'T HAVE A ROLE OR HE'S INCAPACITATED AND AFTER THAT YOU NEED SOMEONE ELSE TO MAKE DECISIONS? >> SO FIRST, ONE POINT IN THIS KIND OF CASE, I WASN'T AWARE YOU DON'T NEED NORMALLY TO GET THE SURROGATE TO AGREE TO TRANSFUSIONS. HERE, A BASIC COURTESY WOULD HAVE INDICATED THOUGH YOU'RE NOT REALLY ASKING PERMISSION IN THIS CASE, THAT IT WOULD BE COURTEOUS TO LET THE SURROGATE GIVEN FOR RELIGIOUS BACKGROUND KNOW THAT'S WHAT'S GOING TO HAPPEN. NOW, DAVID, FOR THE CASE YOU'RE RAISING, I'M GOING TO ONLY SPEAK MORALLY. I WAS TOLD IN ILLINOIS, WHERE I'M FROM, THERE IS A LEGAL DISTINCTION BETWEEN A POWER OF ATTORNEY AND DECISION MAKER. THE FORMER HAS LEGAL AUTHORITY TO OVERRIDE THE PATIENT'S PREFERENCE. I'M NOT A LAWYER SO I WON'T VOUCH FOR THAT BUT DOES MAKE ME THINK I SHOULD NOT SPEAK ABOUT WHAT'S LEGALLY PERMITTED IN ANY JURISDICTION BUT MORALLY WITHIN THE FRAMEWORK OF THINKING ABOUT IT, WHY WE HAVE SURROGATES TO MAKE DECISIONS. I THINK IF THE CASE IS CLEAR ENOUGH, THE SURROGATE'S JOB IS TO BE A DELEGATE. THE SURROGATE IS NOT SUPPOSED TO THINK FOR HERSELF. SHE'S SUPPOSED TO BE THERE TO SAY THE THINGS THE PATIENT WOULD SAY BUT IN THE SENSE THESE ARE THE THINGS THE PATIENT HAS CLEARLY SAID AND THE SURROGATE IS JUST ANALOGOUS. THERE MAY BE CONTEXT WHERE THE COURTEOUS THING TO DO IS TO LET THE SURROGATE KNOW WHAT'S GOING TO HAPPEN BEFOREHAND IF THERE'S TIME. >> AND YOU DON'T EVEN SO THERE IS THIS WAY IN WHICH -- I'D LOVE TO SEE WHAT OTHER PEOPLE IN DEPARTMENTS SAY DIFFERENT. MY SENSE IS A LOT OF TIMES ONCE SOMEBODY BECOMES INCAPACITATED WE VIEW THE SURROGATE AS TAKING THE ROLE OF DECISION MAKER. TYPICALLY IN CLINICAL CARE WHEN YOU WANT TO GIVE SOMEBODY ANTIBIOTICS, YOU WANT TO GIVE THEM LUNCH, YOU'RE COMPETENT THEY WANT THESE THINGS BUT YOU STILL ASK THEM. YOU DON'T JUST SAY WE'RE GIVING YOU ANTIBIOTICS AND LUNCH, IS THAT OKAY WITH YOU. WHEN A PERSON BECOMES INCAPACITATED THE SURROGATE TAKE THE ROLE OF THE PATIENT SO YOU SAY TO THE SURROGATE, SHOULD WE GIVE HIM ANTIBIOTICS NOW? BUT IS THE SUGGESTION WE DON'T SAY THAT? WE SAY WE'RE GOING GIVE THEM ANTIBIOTICS OR AS SAMIR SAID AND I DOESN'T BRING THIS UP BUT AT THE TIME THE CRISIS STARTED, THE WIFE WASN'T IN THE BUILDING MUCH LESS THE STATE. COULD WE JUST SAY WE KNOW WHAT HE WANTS AND WE'LL CALL BUT WE'RE GOING AHEAD. ANY THOUGHTS ON THAT? >> YOU HAVE A SET OF CATEGORIES IN PLACE THAT ARE LIKELY TO BE POSITIVE. THAT DOESN'T MEAN YOU DON'T HAVE HUMAN INTERACTION WITH CLINICIANS, WITH A FAMILY AND SO ON AND SO FORTH. IN SOME CONTEXT THERE MAY BE UNNECESSARY TO LET THE SURROGATE OR OTHER FAMILY MEMBERS KNOW AND IN OTHER CONTEXT IT'S APPROPRIATE TO LET THEM KNOW. >> BUT THAT'S LETTING THEM KNOW RATHER THAN ASKING THEM TO MAKE A DECISION. >> LETTING THEM KNOW DOES OF COURSE OPEN THE DOOR TO THEM SAYING, LET ME EXPLAIN TO YOU THAT 72 TIMES THE PATIENT TOLD ME IN NO UNCERTAIN TERMS NEVER TO DO THIS AND IF YOU BELIEVE THERE WERE THOSE 72 TIMES, THEN THE QUESTION IS OF WHAT THE PATIENT WANTS GETS MORE COMPLICATED. >> GOOD. >> I WANTED TO ADD ANOTHER PIECE THAT'S RELEVANT HERE IS IN DISCUSSION WITH THE WIFE WHO WAS QUITE UPSET WHEN SHE REALIZED WE HAD TO GIVE THE BLOOD COMMUNICATION HELPS. SO WHEN WE MADE IT VERY CLEAR TO HER THAT WE GOT MIXED MESSAGES AS THE PROVIDERS THAT THERE'S TWO WRITTEN DOCUMENTATION GIVING US TWO PATHWAYS OF CARE AND IT WAS INTERESTING TO GET HER PERSPECTIVE. SHE WASN'T AWARE OF THE PREVIOUS CONSENT WHERE HE AGREED TO ALL BLOOD PRODUCTS WHICH IS IMPORTANT FOR THE SURROGATE'S THOUGHT PROCESS BECAUSE FOR HER DECISION MAKING THERE HAS TO BE ALL THE INFORMATION IN HER BRAIN BEFORE THIS IS AN NCHD DECISION. SO THAT WAS ONE PIECE WHICH I THINK THE COMMUNICATION WAS IMPORTANT AND THE OTHER PIECE THAT WAS INTERESTING IS SHE FELT MAY BE AT THE TIME WHEN HE GOT THE CONSENT PRIOR HE DIDN'T UNDERSTAND ALL THE DID I TAIL OF THE CONSENT WHEN IT WAS EXPLAINED TO HIM. THIS IS SUBJECTIVE BUT I THOUGHT THE POINTS WERE INTERESTING HERE. >> AS A PRACTICAL POINT, WHEN THE PROVIDER IS IN THE SITUATION YOU WONDER WHAT THE QUENCES MAY BE WITH THE DECISION OR THE OTHER. AS A QUESTION, IS THERE A CASE LAW OR DONE A STUDY WITH DETERMINATION OF THE CASES WHERE IT FALLS ON THE PERSON AND WHAT IS THE PROBABILITY YOU'LL GET WHAMMED? >> I AM FORTUNATELY/UNFORTUNATELY NOT A LAWYER BUT PHILOSOPHY PROFESSOR. CLINICIANS WANT TO KNOW WHETHER WHAT THEY'RE DOING WILL EXPOSE THEM TO LEGAL LIABILITY. I DON'T KNOW. MY HYPOTHESIS IS WHEN YOU SAVE SOMEONE'S LIFE THE POSSIBILITY IS REDUCED. >> THAT WOULD WHAT THE WILL OF THE PEOPLE TURNS OUT TO BE. THAT ONE NOW?ANT TO JUMP IN ON - >> I'M GUESSING CLINICALLY IF YOU SAVE A PERSON'S LIFE AND THEY'RE MAD AT YOU, YOU'RE BETTER THAN LETTING THEM DIE. >> THERE WAS A SAYING THERE WAS BASICALLY YOU SHOULD DO WHAT MAKES THE MOST SENSE IN THE CASE AND THAT'S WHAT'S LEGALLY MOST PROTECTIVE. THAT'S WHAT WE'RE TRYING TO FIGURE OUT. >> SO I HEARD THE CASE SLIGHTLY DIFFERENTLY AND WONDERING IN TERMS OF CAPACITY ASSESSMENT, IT MAY BE POSSIBLE THE PATIENT ALREADY DIDN'T REALLY HAVE CAPACITY WHEN THE WIFE WAS IN THE ROOM KIND OF MAKING A DECISION AND THE QUESTION IS WHERE IS THE PATIENT ALLOWED TO CHANGE THEIR MIND IF IT WAS SUPER CLEAR AND WHEN DO YOU ALLOW THAT. AND AS A SELF-SERVING THING, MAYBE HAVING A CLINICAL RESEARCH ADVOCATE IN THESE TYPES OF SITUATIONS, A THIRD PARTY WHO OBSERVES THE CONSENT AND TRY TO ASSESS THE SURROGATE MIGHT HAVE BEEN HELPED. >> FOR PEOPLE WHO DON'T KNOW, THAT WAS A WORD BROUGHT TO YOU BY THE CLINICAL DIRECTOR OF THE MENTAL HEALTH INSTITUTE WHO HAS SURROGATES. SO IF YOU NEED SUCH A PERSON FOR YOUR PROTOCOL, GIVE MARILYN A CALL. >> DO WE ASSESS THE PATIENT'S CAPACITY BEFORE ASSIGNING THESE THINGS? AND WE CAN GET INTO DEBATE FOR WHAT PROPER CAPACITY IS. TO THE EXTENT THAT IT IS FEASIBLE TO HAVE MORE USEFUL DATA WHEN YOU'RE TRYING TO FIGURE OUT WHAT HAS THIS PATIENT TOLD US YES, THERE ARE PRACTICAL PROBLEMS FOR GETTING MORE PEOPLE IN A ROOM AND GETTING PEOPLE WHO KNOW ENOUGH ABOUT ANY GIVEN FAMILY TO BE ABLE TO MAKE A JUDGMENT CALL AS TO WHETHER WHAT WE'RE OBSERVING IS SOME SORT OF UNDUE CONSTRAINT THE WIFE IS PUTTING ON THE PATIENT OR WHETHER THE PATIENT -- PATIENT IS ALLOWED TO WANT TO PLEASE HIS WIFE. SO LET ME IS A NO. IF THE WIFE HAD SAID, THE PATIENT GETS BROUGHT BACK A LITTLE BIT AND THE WIFE MAKES PLAIN IF HE TAKES BLOOD PRODUCTS, THAT'S THE END OF THEIR MARRIAGE, AND HE SAYS, IN THAT CASE I WON'T TAKE BLOOD PRODUCTS, THAT'S THE EXERCISE OF HIS WILL. THAT'S NOT COERCION OR CONSTRAINT. THAT'S HIS JUDGMENT CALL ABOUT WHAT'S MOST IMPORTANT TO HIM AND THAT SHOULD BE RESPECTED. SO IT'S A TOUGH BUSINESS TO TRY TO GAUGE WHETHER THE PRESENCE OF A RELATIVE UNDERMINE AS A CONSTRAINT. >> SO JUST TO CLARIFY THANE STORY, THE TEAM MIGHT HAVE HAD AN OPPORTUNITY TO TRY TO CLARIFY AHEAD WHEN THE WIFE WAS THERE AND THE CONSENT WAS DIFFERENT. >> OR WHEN SHE LEFT THEY COULD HAVE ASKED AFTER SHE LEFT. >> IMPORTANT ETHICAL QUESTION FROM DAN BRUDNEY TODAY, HELP PATIENTS KEEP THEIR WIVES HOUSES. >> ALL SPOUSES. >> HE'S GETTING MORE RADICAL. >> QUESTION FOR DAN. YOU DREW A DISTINCTION BETWEEN WHAT THE PATIENT WANTS AND WHAT THE PATIENT WOULD WANT. THEN YOU SAID WE'RE NOT GOING TO TALK ABOUT THE PATIENT WOULD WANT AND DENNIS, YOU WERE EXPLAINING YOUR REASONING WHAT THE PATIENT WANTS IT BEGAN TO CONFUSE ME. IT SEEMS THE PATIENT IN THIS CASE, WITH RESPECT TO THE DECISION ABOUT THIS BLOOD TRANSFUSION, DOESN'T WANT ANYTHING. HE HAS NO WANTS AT THE MOMENT WITH REGARDS TO THAT DECISION. THE EVIDENCE YOU SUPPLIED FOR THE MOST PART SOUNDED LIKE EVIDENCE ABOUT OTHER THINGS THE PATIENT HAD WANTED. SO IN THE PAST, THE PATIENT PRESUMABLY WANTED A BLOOD TRANSFUSION. TO ME, I WOULD SAY THAT'S RELEVANT BECAUSE IT SAYS SOMETHING ABOUT WHAT THE PATIENT WOULD WANT. IF IN THE PAST THE PATIENT WOULD WANT A BLOOD TRANSFUSION AND NOW IN A SIMILAR SITUATION IT'S EVIDENCE HE WOULD WANT ONE NOW AND SPEAK WHY YOU WANT US TO THINK ABOUT THEM SEPARATELY. >> GREAT QUESTION. TO STEP BACK FOR A MOMENT, WE HAVE TO ASK WHY DO WE LET SURROGATES DECIDE. ONE THING WE MAY BE ASKING THE REPRESENTATIVE TO DO IS SIMPLY TELL US WHAT THE PATIENT WANTED. NOW, THAT CREATES EVIDENTIARY QUESTIONS AND IT'S MORE DUBIOUS IT IS WHAT WE'RE GET FROM THAT PIECE OF EVIDENCE IS A STATEMENT ABOUT WHAT THE PATIENT WANTS TO HAVE HAPPEN IN THIS PARTICULAR SITUATION. EVIDENTIARY QUESTIONS ARE COMPLICATED BUT WE CAN IN SOME CASES ENOUGH EVIDENCE ABOUT WHAT THE PATIENT HAS SAID THAT WE CAN SAY WHAT WE ARE DOING IS GIVING EFFECT TO THE PATIENT'S WILL. THERE COULD BE A CONTEXT IN WHICH WE DON'T HAVE THAT KIND OF EVIDENCE OR THE EVIDENCE IS MURKY WE DON'T KNOW WHICH WAY IT POINTS. THEN WE COULD ASK THE HYPOTHETICAL QUESTION, WHAT WOULD THE PATIENT WANT. NOW, THE EVIDENCE WOULD BE RELATIVE TO THAT QUESTION AS WELL. THAT IS WHEN YOU WANT TO KNOW WHAT I WOULD LIKE FOR LUNCH, IF EVERY WEEK I'VE BEEN EATING THAT BACON DOUBLE CHEESEBURGER IT'S LIKELY THAT'S WHAT I'D WANT THOUGH I HAVEN'T TOLD YOU TO ORDER IT FOR ME. IT'S NOT LIKE TO THE EVIDENCE OF WHAT'S BEEN DONE IN THE PAST IS NOT RELEVANT. IT'S VERY RELEVANT BUT IT ONLY COMES IN WHEN IT SEEMS WE DON'T HAVE AN ADEQUATE WAY OF SAYING THIS IS WHAT THE PATIENT HAS INDICATED THROUGH THE EXERCISE OF HIS OR HER WILL, WHAT SHOULD BE DONE. THEN WE GET TO ANOTHER QUESTION IS WHY THIS HYPOTHETICAL QUESTION IS A USEFUL QUESTION AND THAT GOES TO A DIFFERENT AREA BECAUSE THERE I THINK THE HYPOTHETICAL QUESTION GOES TO TRYING TO FIGURE OUT WHAT OVERALL IS IN THE PATIENT BEST INTERESTS. IT'S NO LONGER ABOUT THE EXERCISE OF THE WILL BUT THE PATIENT'S BEST INTEREST. PART OF WHAT'S IN SOMEONE'S BEST INTEREST MAY BE TO PURSUE AND HAVE TREATMENT GO IN LINE WITH WHAT THEY HAVE WANTED IN THE PAST. WITH PROJECTS AND LIFE GOALS. THAT'S A DIFFERENT MOVE ONE MAKES. I THINK IT IS IMPORTANT WE THINK IN TERMS OF WHEN THE SURROGATE IS A DELEGATE AND WHEN SHE'S ACTING AS A TRUSTEE. >> I ALSO HAVE A QUESTION FOR DAN. I WAS WONDERING WHETHER THERE'S ANY VARIATIONS ON THE CASE WHERE DESPITE THE PRE -- PREPONDERANCE OF EVIDENCE WE GO WITH WHAT THE WIFE WANTED MAYBE NOT WHEN THE LIFE IS ON THE LINE BUT SOMETHING STILL CONSEQUENTIAL CLINICALLY BUT NOT AS SUCH AND TO WHAT EXTENT DID THE PATIENT WANT TO PLEASE THE SPOUSE AS YOU SAID EARLIER AND HOW DO THOSE KINDS OF CONSIDERATIONS THAT ARE OUTSIDE OF WHAT THE PATIENT WANTED OR SLIGHTLY DIFFEREN ASPECT OF IT TO HOW TO WEIGH THOSE. >> THANK YOU. AT THIS POINT I'VE BEEN ASSUMING A CERTAIN PICTURE OF BEDSIDE DECISION MAKING. DO WE HAVE EVIDENCE OF WHAT THE PATIENT WANTS. SECOND IS DO WE HAVE EVIDENCE OF WHAT THE PATIENT WOULD WANT AND THIRD IS WHAT IS IN THE PATIENT'S BEST INTEREST. WE COULD OF COURSE SAY THAT'S NOT THE RIGHT MODEL AND OTHER INTERESTS COME INTO PLAY. WE COULD THINK AT THE MARGINS FAMILY INTERESTS ARE RELEVANT. IF THE SPOUSE ESPECIALLY IF THINGS ARE SUFFICIENTLY UNCLEAR AND IF IT'S NOT AS IT WERE, A BIG DEAL DECISION, I'M OPEN TO THE THOUGHT WE SHOULD CHANGE THE MOB AND ALLOW NON-PATIENT INTERESTS TO COME INTO PLAY. I THINK THAT'S WHAT WE WOULD BE DOING AND IT WOUL BE IMPORTANT TO ACKNOWLEDGE THAT AND EARNING FOR THE PROPRIETARY OF DOING IT FOR HIMSELF. >> IT'S NOT 100% CLEAR TO ME IT WOULD NOT BE A PATIENT INTEREST IF THE PATIENT HASN'T BEEN MAINTAINING THE RELATIONSHIP. THERE SEEMS TO BE AMBIVALENCE ON THE PART OF THE QUESTION HOW HE WOULD HANDLE THIS WITH A SPOUSE PRESUMABLY MORE RELIGIOUS THAN HE WAS. >> I'M SORRY. I WAS ADDRESSING THE THOUGHT THE CLINICIAN MAY HAVE INDEPENDENT REASONS FOR THE SPOUSES PREFERENCES. IT GETS STICKY IF IT'S A LIFE-THREATENING SITUATION AND THE PATIENT WANTS TO MAINTAIN THE RELATIONSHIP WITH THE SPOUSE. AND THERE COULD BE REASON TO GO TO THE SPOUSE'S DIRECTIVE BUT YOU'RE WEIGHING THE PATIENT HEAVILY AND WITH TO OVERRIDE WHAT IS THE [INDISCERNIBLE]. >> I THINK WE HAVE EVIDENCE OF AN INTEREST OR WANT OF THIS PRNT THAT'S NOT BEEN ADDRESSED. I THINK WE HAVE A STRONG AMOUNT OF EVIDENCE THEY WANT A BLOOD TRANSFUSION BUT THEY ALSO DON'T WANT THEIR SPOUSE TO KNOW ABOUT THAT. THIS IS COMMON FOR PATIENTS OF JEHOVAH'S WITNESSES WILLING TO ACCEPT BLOOD PRIVATELY BUT PART OF THEIR FEAR IS THEIR COMMUNITY WILL LEARN OF THEIR TAKING OF BLOOD AND OSTRACIZED. I'VE BEEN SCHOOLED TO MAKE SURE I ASK THEM IN PRIVATE AND ASK THEM DO THEY WANT THEIR OTHERS TO KNOW. AND TO NOT ENGAGE THE REPRESENTATIVE OF THE CHURCH THAT'S A DELEGATED DECISION GUIDE FOR THEM. ONE OF THEIR STRONG INTERESTS MAY HAVE BEEN TO NOT EVER LET ANYONE KNOW THEY'D ACCEPT BLOOD. >> COULD WE PUT YOU ON THE SPOT. WE DON'T CALL THE WIFE UP AT ALL AND TELL THE WIFE WE GAVE HIM BLOOD. NOW, AND SAYS SO WHAT'S BEEN GOING ON THE LAST 24 HOURS, DO WE SAY NOT MUCH? DO YOU TELL THEN? >> IT'S A VERY DIFFICULT SITUATION BEING A CLINICIAN. IF YOU HAVE MADE THE DECISION KNOWINGLY AND HAVE THE FACTS IN FRONT OF YOU, ONE WAY TO INTERPRET THIS IS HIS STRONG DESIRE IS NOT TO LET OTHERS KNOW. IF YOU'VE MADE THAT DECISION, THEN I'M GOING TRANSFUSE -- AS AN ICU DOC, I WOULD HAVE TRANSFUSED NO QUESTION. I WOULD HAVE JUST DONE IT. THERE WAS A STRONG AMOUNT OF EVIDENCE AND I WOULD HAVE HAD A 30-SECOND STRONG ETHICAL DILEMMA BUT I WOULDN'T HAVE INFORMED. I DON'T KNOW IF THERE'S AN EQUIVALENT OF THERAPEUTIC PRIVILEGE YOU'RE INVOKING. >> OKAY. ONE LAT ONE. >> YOU DID VERIFY WHAT THE SITUATION IS IN THE MORNING. IF HE'S AWAKE AND ALERT HE SHOULDN'T BE TALKING TO HIS WIFE ABOUT IT UNLESS THE BOUNDARIES ARE THE WAY THE SHOULD BE. THE QUESTION DOESN'T MAKE SENSE. >> HE'S STILL SNOWED AND INTUBE INTUBATED AND YOU HAVE ALL THIS HAND WRINGING FOR 12 HOURS AT THE CONSULTATION AND EVERYBODY DISCUSSION IT AND SHE COMES IN AND TO SAMIR, ANYTHING GOING ON IN THE LAST 24 HOURS. IS HE SUPPOSED TO GO, NO? IT'S BEEN TAKEN CARE OF. IT'S WHETHER IN THAT SETTING WHERE SHE DOESN'T ASK EXCLUSIVELY ABOUT IT BUT IT SEEMS LIKE YOU HAVE TO AT LEAST CONCEAL OR FAIL TO DISCLOSE WHAT SEEMED LIKE A BIG DEAL AT THE TIME. THAT WAS THE QUESTION. >> TAKE A SHOT AT IT. >> I'M NOT SEEING THE DILEMMA. IF YOU MADE THE DECISION THIS WAS THE RIGHT THING TO DO BASED ON YOUR JUDGMENT ABOUT WHAT THE PERSON WANTS AND YOU HAVE EVIDENCE FOR IT, THEN YOU OPENLY DISCUSS THAT'S WHAT YOU DID. >> ARE YOU SAYING TO THE WIFE WE GAVE HIM BLOOD? >> I DON'T KNOW WHY IT WOULD FEEL LIKE CONCEALMENT. >> WHAT IF THE PATIENT HAS EXPLICITLY SAID DON'T TELL MY WIFE? >> IN THAT CASE IT'S EASY TOO. THAT'S CLEAR, YOU DON'T. >> THEN SHE SAYS DID YOU GIVE HIM BLOOD AND YOU SAY WE'RE NOT GOING TO TELL YOU? >> IF SHE ASKS US AND IF HE DIDN'T SAY DON'T TELL MY WIFE, LET'S PUT THAT PIECE OUT. ALL YOU HAVE IS THE DECISION THE PERSON WANTED BLOOD AND YOU GO AHEAD AND DO IT. THE PERSON COMES IN, THE WIFE COMES IN AND ASKED THE QUESTION SPECIFICALLY, YOU SHOULD TRUTHFULLY TELL WHAT HAPPENED. WHAT'S THE BIG DEAL? [OFF MIC] >> IT'S NOT THAT YOU DON'T KNOW NOTHING ABOUT WHAT HE WANTED. >> IF YOU KNOW, THAT'S MY POINT, IF YOU KNOW HE DOESN'T WANT TO YOU SPEAK, THAT'S CLEAR. YOU KNOW WHAT YOUR DUTY IS. IF THAT DOESN'T EXIST YOU KNOW WHAT YOU SHOULD DO. SO WHAT I'M SAYING IS WHAT YOU'RE SAYING IS THE EVIDENCE OF HIS WILLINGNESS TO LET HIS WIFE KNOW IS AMBIGUOUS AND YOU'RE TORN ABOUT IT, THAT'S THE DILEMMA, NOT THIS. >> ALL RIGHT. THANK YOU EVERYBODY.