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>>FOR TODAY WE WILL DISCUSS THE
QUESTION OF FIGURING OUT WHEN
THE POTENTIAL BENEFITS OF
INTENSIVE CARE JUSTIFY THE
BURDENS AND THE RISKS.
SO THIS WAS A VERY HARD CASE FOR
A LOT OF PEOPLE WHO WERE
INVOLVED IN IT AT THE NIH
CLINICAL CENTER AND I JUST WANT
TO EMPHASIZE THAT THE GOAL OF
THESE SESSIONS, ISN'T TO DISSECT
THE SPECIFIC CASES, NOT TO DO A
POSTMORTEM ON A PARTICULAR CASE.
INSTEAD IT'S THE USE THE CASE AS
A BEGINNING POINT FOR THINKING
ABOUT THE IMPORTANT AND
INTERESTING ETHICAL ISSUES THAT
GET RAISED BY THE CASE.
SO I THINK IN THEORY AT LEAST
FOR ANSWER TO THE QUESTION TODAY
IS PRETTY EASY, HOW DO YOU ADD
UP THE POTENTIAL BENEFITS OF
INTENSIVE CARE AND JUSTIFY THE
RISKS, SO SO PROBLEM IS SOME
PHILOSOPHERS HAVE BEEN TRYING TO
DO THAT FOR A NUMBER OF YEARS
AND NO 1'S COME UP WITH AN
ALGORITHM TO DO THAT
EFFECTIVELY?
SO WHERE DOES THAT LEAVE US?
IT LEAVES US WITH OUR OWN
JUDGMENT, WE HAVE TO MAKE
DECISIONS ABOUT WHEN WE THINK
THE POTENTIAL BENEFITS JUSTICE
THE RISK.
ONE OF THE CHALLENGES THERE IS
THAT OUR JUDGMENTS CAN OFTEN BE
INFLUENCED BY OUR ROLE IN THE
CASE, OUR PERSPECTIVE ON THE
CASE.
SO IF YOU'RE A CLINICIAN, YOU
MIGHT THINK, WELL, A VERY, VERY
LOW CHANCE OF BENEFIT, THAT
MEANS I WILL HAVE TO TREAT MAYBE
HUNDREDS OF PATIENTS AND BURDEN
HUNDREDS OF PATIENTS TO BENEFIT
EVEN 1.
THAT DOESN'T SEEM LEAK A VERY
GOOD DEAL.
ON THE OTHER HAND IF YOU'RE THE
PATIENT OR THE SURROGATE, EVEN A
VERY, VERY LOW CHANCE OF
MEANINGFUL RECOVERY MAY BE THE
ONLY CHANCE YOU HAVE AND IT'S
SOMETHING THAT YOU WANT TO TAKE.
THIS CHALLENGE WAS ILLUSTRATED
FOR ME A COUPLE WEEKS AGO, ON A
DIFFERENT CASE I WAS CONSULTED
ON, WHERE A WOMAN WAS ACTING AS
A SURROGATE FOR HER VERY SICK
HUSBAND AND WE HAD A LONG
CONVERSATION ABOUT HOW SHE MIGHT
MAKE DECISIONS AND CARE FOR HER
HUSBAND FOR ABOUT AN HOUR, TALK
ABOUT THE RISKS AND BENEFITS AND
HOW SHE COULD BALANCE THEM.
AT THE END OF THE CONVERSATION
SHE LOOKED AT ME AND SAID, IS
THERE ANY CHANCE AT ALL THAT HE
WILL RECOVER?
AND ALTHOUGH I'VE BEEN DOING
THIS FOR 25 YEARS NOW, I STILL
CAN'T FIGURE OUT THE RIGHT WAY
TO ANSWER THAT QUESTION AND SO
HOPEFULLY THIS IS SOMETHING WE
CAN TACK ABOUT AND MAYBE I WILL
LEARN SOMETHING FOR TODAY.
SO IN HAVING THIS DISCUSSION, WE
HAVE 3 VERY TALENTED PEOPLE, TO
SAVE TIME AND ALSO TO KEEP THE
REST OF US FROM FEELING BAD BY
LISTENING TO ALL THE THINGS
THEY'VE DONE IN THEIR CAREERS, I
WILL JUST INTRODUCE THEM VERY
BRIEFLY SO FIRST IS ALEX
FREEMAN, SHE'S A PHYSICIAN AND
DIRECTOR OF THE PRIMARY IMMUNE
DEFICIENCY CLINIC AT THE NIAID
AT THE NIH, NEXT AND DAN
CHERTOWD, AND HE A ATTENDING
PHYSICIAN AT THE ICU.
AND THEN THE PERSON WHO WAS
GRACIOUS ENOUGH MY INVITATION TO
HELP ANSWER 3 OR 4 IMPOSSIBLE
QUESTIONS IN UNDER 20 MINUTE
SYSTEM DOUG WHITE.
DOUG WHITE IS A PROFESSOR OF
CRITICAL CARE MEDICINE, HE'S
ALSO THE UPMC ENDOWED CHAIR FOR
ETHIC IN CRITICAL CARE MEDICINE
AT THE UNIVERSITY OF PITTSBURGH
AND DOUG IS WIDELY RECOGNIZED AS
1 OF THE LEADERS IN THINKING
ABOUT THE ETHICS OF CRITICAL
CARE AND ALSO SURROGATE DECISION
MAKING.
SO IT'S GREAT TO HAVE HIM HERE.
SO TO GET US GOING, ALEX?
>> THANK YOU.
I'M JUST GOING TO SHARE MY
SLIDES.
OKAY, THANK YOU FOR THE
INVITATION TO SPEAK TODAY, IT'S
ALWAYS A LITTLE TOUGH WHEN YOUR
PATIENT IS CHOSEN FOR SOMETHING
LIKE THIS, I DON'T HAVE ANY
CONFLICTS OF INTEREST, I WILL
DISCUSS MEDICATIONS THAT ARE OFF
LABEL JUST BECAUSE THE DIAGNOSIS
WAS UNCLEAR AND THEN QUICKLY
THERE ARE MY LEARNING OBJECTIVES
FOR THE CME.
SO THIS PATIENT WAS REFERRED TO
ME BACK IN 2017 TO BE SEEN IN
OUR PRIMARY IMMUNE DEFICIENCY
CLINIC FOR WORK UP OF HER IMMUNE
DISREGULATION, SHE HAD A
COMBINATION OF BOTH IMMUNE
DEFICIENCY SIGNS WITH PREVIOUS
DISPOSITION TO A BUNCH OF
INFECTIONS AS WELL AS SIGNS OF
AUTOIMMUNITY WITH AN UNKNOWN
ETIOLOGY, AND WORSENING
SOMETIMES.
SO AT THE TIME WE SAW HER SHE
WAS 19 AND SHE HAD A LIFETIME OF
RASHES AND RECURRENT INFECTIONS
AND CAME TO ME IN PART BECAUSE I
SEE SOME OF THE PRIMARY IMMUNE
DEFICIENCIES SEEN AT NIH THAT
HAVE CHOSE CHARACTER IEOF
THETICS, LIKE THE HYPER IGE
SYNDROMES.
Y SO SHE HAD A RASH SINCE
INFANCY, IT WAS DIAGNOSED AS
ECZEMA, OVER THE YEARS, FAILED
MANY, MANY TYPES OF THERAPIES
THAT ARE EEIVELGTIVE FOR ATOPIC
DERMATITIS AND SHE WAS TREATED
MANY TIMES WITH COURSES OF ORAL
STEROIDS LIKE PREDNISON E WHICH
CAN WEAKEN THE IMMUNE SYSTEM
WHEN YOU TAKE THEM--THAT MEANS
ALL OF HER HAIR ON HER BODY FELL
OUT WHEN SHE WAS ABOUT 16 YEARS
OLD AND SHE HAD RECURRENT
PNEUMONIAS OVER THE YEARS
STARTING AFFAIRS TEAM LEADER 9
YEARS, 1 TIME WITH A SEVERAL
WEEK HOSPITALIZATION.
SHE WAS A CARRIER FOR 1 OF THE
CYSTIC FIBROSIS MUTATIONS, IT
WAS RUNCLEAR IF THAT WAS
CONTRIBUTING IN THAT WAY BUT SHE
DID NOT HAVE CF.
SHE'S HAD MUC O KAN--KANA
TIANYLIOUS CANDIDIASIS, SHE WAS
GETTING YEAST INFECTIONS,
THRUSH, YEAST IN THE MOUTH AND A
LOT OF TROUBLE WITH WARTS AND
VIRAL SKIN INFECTIONS SINCE SHE
WAS 8 YEARS OLD, THEY HAD BEEN
TREATING MANY, MANY DIFFERENT
WAYS BUT KEPT COMING BACK AND
HAD NOT BEEN SUCCESSFUL IN TERMS
OF THERAPY.
SO SHE HAD BEEN FOLLOWED EMORY
IN GEORGIA BY THEIR IMMUNOLOGY
GROUP FOR MANY YEARS AND SHE
DEFINITELY HAD SIGNS OF IMMUNE
DEFICIENCY.
HER LYMPHOCYTES AND WHITE BLOOD
CELLS WERE VERY LOW, WITH LOW
SPECIFICALLY HER CD 4 T-CELLS
WHICH RESULTS IN PREDISPOSITION
TO VIRAL INFECTIONS AND SOME
BACTERIAL INFECTIONS, SHE HAD
GENETIC TESTING AND GENETIC
TESTING THERE BUT YOU KNOW THERE
HAVE BEEN POSSIBLES BUT NO CLEAR
ANSWER FOR WHAT WAS DRIVING ALL
OF HER PROBLEMS.
HER CARE HAD BEEN FRACTURED, SHE
HAD INSTABILITY IN HER HOME
SITUATION AND IT WAS
INTERESTING, ACTUALLY SHE CAME
TO SEE US, SHE REACHED OUT WHEN
SHE TURNED 18 BECAUSE SHE WAS
NOW THE DECISION MAKER FOR HER
MEDICAL CARE AND SHE WANTED TO
BE MORE PROGRESSIVE AND COME UP
WITH AN ANSWER.
AND ALTHOUGH SHE HAD GROWN UP
MOSTLY LIVING IN HER MOTHER'S
HOUSE, HER GRANDMA WAS NEARBY
AND HER GRANDMA REALLY BECAME
HER MAIN MEDICAL SUPPORT PERSON
OVER THE YEARS.
SHE HAD NO FAMILY HISTORY OF
SIMILAR ISSUES, HER MOM WAS
DIABETIC AND LITTLE FTION KNOWN
ABOUT HER FATHER'S MEDICAL
HISTORY.
SO WHETHER SHE CAME TO SEE US, I
WILL HIGHLIGHT DIFFERENT ISSUES
SHE HAD OVER THE NEXT FEW YEARS.
THE DERMATOLOGISTINGS WERE
EXTREMELY INVOLVED AND VERY
HELPFUL OVER THE YEARS AND HER
SKIN CONDITION WAS VERY
DIFFICULT AND PERPLEXED ALL OF
US.
OT BIOPSIES AND BY PHYSICAL EXAM
NATION, IT LOOKED MORE
CONSISTENT WITH AN ATYPICAL
PSORIASIS AND IMMUNE CONDITION
OR SIMILAR [INDISCERNIBLE], SO,
YOU KNOW OVER THE NEXT FEW
YEARS, WE TRIED A BUNCH OF
DIFFERENT THERAPIES TO STABILIZE
HER SKIN DISEASE, TARGETED FOR
PSORAISIS, AND OTHER THERAPIES
SUCH AS REDINOIDS AS WELL AS
TRYING SOME THERAPIES FOR MORE
OF AN ECZEMA PRESENTATION, BUT
YOU KNOW THESE THERAPIES WOULD
MAKE WORK A LITTLE BIT FOR A
COUPLE MONTHS BUT THEN HER SKIN
WOULD COME ROARING BACK TO WHERE
IT WAS AND KEPT PROGRESSING AND
SOME OF THE MORE AGGRESSIVE
THERAPIES, WE WERE LIMITED BY
BECAUSE OF THE CONTROL OF VIRAL
INFECTION AND WARTS.
OVER THE TIME THE SKIN WORSENED
AND HER QUALITY OF LIFE WORSENED
AS A RESULT AND SHE STOPPED
BEING ABLE TO WORK.
SO I HAVE A FEW PICTURES HERE
AND YOU CAN SEE, YOU KNOW MOST
OF HER SKIN WAS ACTUALLY THIS
RED AND VERY FLAKY.
YOU CAN SEE A LITTLE BIT OF
FLAKE IN THESE AREAS, CAN YOU
SEE BEHIND HER KNEES, THE SMALL
MATCHES OF NORMAL SKIN AND YOU
KNOW, IT WAS EXTREMELY STRIKING
HOW FLAKY HER SKIN WAS.
AND IT REALLY BEGAN TO INTERFERE
WITH HER ABILITY TO DO ANYTHING
WHEN SHE WAS AT HOME.
SHE WOULD WALK DOWN THE HALLWAYS
AT NIH AND WOULD BE THIS PATH OF
SKIN FLAKES LEFT BEHIND.
HER INFECTIONS WERE ALSO
DIFFICULT TO CONTROL.
SO SHE WAS HAVING A LOT OF
TROUBLE WITH WORSENING OF HER
HPV, THE WARDS THAT WERE CAUSING
VULVAR AND PERIANNAL DISEASE AS
WELL AS ABNORMAL APPLIED SMEARS
AND WE WERE CONCERNED WHETHER
THIS WOULD BE PROGRESSING TO AN
HPC RELATED CANCER, SHE ALSO HAD
VIRUSES THAT MANY OF US GET AND
OUR BODY CONTROLS EVEN THOAR
THEY'RE LATENTLY IN OUR BODIES
SUCH AS EBV, THE EPSTEIN BAR I
HAVEEROUS THAT CAN CAUSE MONOBUT
AWLSZ ALSO WITH A POOR IMMUNE
SYSTEM CAN LEAD TO LYMPHOMAS,
AND BECAME JC VIRUSES, SHE HAD
LUNG NODULES WHILE WE WERE
SEEING HER THAT WERE UNCLEAR IF
THEY WERE INFECTIOUS.
SHE WAS ALSO FOLLOWED BY
PSYCHIATRY AND NEUROLOGY, SHE
HAD AN ACUTE EPISODE OF MANIA,
THE SUMMER 2018 SX HEAT THEN
DEPRESSION AND THAT LED TO A
DIAGNOSIS OF BIPOLAR DISORDER
AND HER SKIN WAS EXTRAORDINARILY
PAINFUL WHEN THE TIME WENT ON
AND THE PAIN SERVICE WAS
INVOLVED SO WHEN THIS PATIENT
CAME TO US, WE REALLY WANT TO
KNOW WHAT IS HER DIAGNOSIS.
YOU KNOW IT'S 1 THING TO LIST
HER SYMPTOMS BECAUSE IF WE CAN
HAVE A SPECIFIC ANSWER THAT
WOULD HELP US TO NOT ONLY GUIDE
THERAPY SOME BUT TO THINK ABOUT
PATIENTS THAT SHARED A SIMILAR
DIAGNOSIS BUT UNFORTUNATELY WE
WERE NOT SUCCESSFUL, BUT STILL
NOT SUCCESSFUL FIGURING OUT WHAT
THE SPECIFIC DIAGNOSIS WAS.
WE DID WHOLE EXOME SEQUENCES TO
LOOK FOR A GENETIC DIAGNOSIS AND
YOU KNOW JUST LIKE ALL OF US--SO
THEN WE REALLY, IT WAS HARHARD
TO KNOW WHAT TO DO.
SHE WAS GETTING WORSE.
SHE WAS NO LONGER ABLE TO HAVE
A--SHE FELT LIKE HER QUALITY OF
LIFE WAS IN PERISH, SHE WAS NO
LONGER ABLE TO WORK, HER VIRAL
INFECTIONS WERE WORSENING, WE
WERE REALLY CONCERNED ABOUT HER
DEVELOPING CANCER AND BEING
LIMITED ABOUT BEING EVEN MORE
AGGRESSIVE WITH THE SKIN
THERAPIES.
AND AT THIS POINT WE HAD TRIED
MANY DIFFERENT THERAPIES.
SO OVER A COUPLE YEARS WE
STARTED TALKING TO HER ABOUT THE
POSSIBILITY OF A BONE MARROW
TRANSPLANT.
YOU KNOW WE SEE OTHER DISEASES
HERE THAT HAVE TROUBLE WITH
SKIN, LIKE, MORE FREQUENTLY
ECZEMA WITH VIRAL INFECTIONS AND
FOR SOME OF THESE DISEASES LIKE
DOCK 8 DEFICIENCIES WE KNOW WE
CAN REVERSE THIS PHENOTYPE AND
STOP THE PROGZ OF THE VIRAL
INFECTIONS BUT WE DIDN'T KNOW
FOR HER AND WE WERE ALL VERY
HONEST WITH HER ABOUT THAT, JUST
US AS THE PRIMARY TEAM BUT ALSO
THE TRAN PLANT GROUP AND WE
DIDN'T KNOW, YOU KNOW WHAT WAS
REALLY DRIVING THE SKIN DISEASE.
SO WE KNEW GOING INTO A BONE
MARROW TRANSPLANT, WE DIDN'T BET
THAT THE ACTUAL RISK WAS CLEAR
WITHOUT KNOWING THE UNDERLYING
RISK AND COULD BE A HIGHER RISK
WITH THAT BUT THE PATIENT CHOSE
TO PROCEED KNOWING THAT THERE
WERE RISKS BUT REALLY CONCERN OF
OUR INABILITY TO COME UP WITH
OTHER OPTIONS AND HER
SIGNIFICANTLY WORSENING QUALITY
OF LIFE.
SO WITH THAT, I JUST WANT TO
THANK--THERE ARE SO MANY PEOPLE
IN THE DIFFERENT INSTITUTES AS
WELL AS IN THE DIFFERENT
CLINICAL CENTER THAT WERE
EXTRAORDINARILY HELPFUL WITH
THIS CHALLENGING PATIENT OVER
THE YEARS AND SO I WILL NOW HAND
IT OVER TO DAN CHERTOW TO TALK
ABOUT THE NEXT STEPS IN HER
CARE.
>> THANK YOU SO MUCH ALEX
>> I HAVE NO DISCLOSURES
ISSUES THE LEARNING OBJECTIVES
FOR MY PORTION OF THE TALK ARE
LISTED HERE, THE FIRST IS TO
REVIEW THE PATIENT'S 5 MONTH
COURSE AT THE NIH CENTER
FOLLOWING TRANSPLANT TO
SUMMARIZE THE MULTIORGAN
DYSFUNCTION AND FAILURE DURING
THIS PERIOD AND THEN TO
HIGHLIGHT EXPERIENCES OF THE
PATIENT AND THE CARE TEAM OVER
THAT PERIOD.
SO ALEX NICELY DESCRIBED THE
CASE BUT IN A SUCCINCT SUMMARY
THIS WAS A 21 YEAR-OLD WOMAN
WITH A PRIMARY UNKNOWN IMMUNE O
DEFICIENCY, CHARACTERIZED BY
IDIO PATHIC CD4 LYMPHPENIA WHO
HAD THIS GENERALIZED
PSORIATIC RASH, GENITAL AND
ANNAL WARTS AND CUTEAINIOUS
CANDIDDIASIS AND ALOPECIA
TOTALIS, AND BRONCH ECTOMYOSIN
ACEIS AND ADRENAL INSUFFICIENCY
AND BIPOLAR DISORDER.
THIS IS A PICTURE OF HER TIME AT
THE NIH CLIN CAM CENTER,
FOLLOWING ADMISSION SHE
UNDERWENT CHEMEE THERAPY
CONDITIONING IN ADVANCE OF AND
PREPARATION FOR HER TRANSPLANT
THAT WAS SCHEDULED SHORTLY
THEREAFTER.
WITHIN 3 DAYS OR ON THE EIGHTH
OF JANUARY WHILE STILL ON THE
MEDICAL FLOORS, THE PATIENT HAD
A CLINICAL EVENT THAT RESULTED
IN HER BEING ADMITTED TO THE
CLINICAL CENTER ICU.
AND THAT EVENT WAS CHARACTERIZED
BY RESPIRATORY FAIL AND YOU ARE
SHOCK AND AFTER OUR INITIAL
EVALUATION, THE UNDERLYING
DRIVER OF THAT WAS DETERMINED TO
BE BILATERAL PULL MONITORARY
EMBOL I THAT HAD PRESENTED WHILE
SHE WAS ON THE FLOOR.
SHE HAD A DEGREE OF RECOVERY
FROM THAT, ALTHOUGH WAS STILL
QUITE ILL AND ABOUT A WEEK LATER
ON THE 16th OF JANUARY
FOLLOWING HER CONDITIONING, SHE
DID HAVE HER TRANSPLANT.
YOU CAN SEE THERE THAT FROM
JANUARY 16th, TILL THE END OF
MAY THAT SHE HAD A NUMBER OF
EXTENSIVE POST TRANSPLANT
COMPLICATIONS WHICH I WILL
SUMMARIZE IN MY SUBSEQUENT
SLIDES.
NEEDLESS TO SAY, SHE WAS IN THE
INTENSIVE CARE UNIT FOR MOST OF
THIS TIME.
SHE DID HAVE BRIEF PERIODS WHERE
SHE WAS ABLE TO RECOVER MOST OF
YOU THAT SHE COULD GET BACK TO
THE MEDICAL FLOORS BUT THE LARGE
PORTION OF THIS TIME WAS SPENT
IN THE INTENSIVE CARE UNIT AT
THE CLINICAL CENTER.
A COUPLE POINTS ON THIS SLIDE TO
NOTE ARE THAT SHE HAD A BONE
MARROW BIOPSY ON MAY EIGHTH.
AND DEGREE OF LEUKOPENIA, THAT
HER TRANSPLANT HAD INGRAFTED,
SHE HAD GREATER THAN 90% DONOR
ON HER CHIMER ACE, SO IT'S
IMPORTANT TO NOTE THAT HER
TRANSPLANT AT LEAST TO SOME
DEGREE HAD INGRAFTED.
GIVEN THE SITUATION WITH THE
PATIENT AND ALSO THE IMPACT ON
THE CARE STAFF AT THE END OF
MAY, THERE WAS AN ANONYMOUS
CONSULT PLACED TO THE ETHICS
SERVICE FROM 1 OF THE STAFF IN
THE ICU.
SO NOW JUST BRIEFLY TO SUMMARIZE
THE VARIOUS COMPLICATIONS THAT
TOOK PLACE BETWEEN THE INTERVAL
THAT I DESCRIBED THERE, THESE
INCLUDE FROM A NEUROLOGICAL
PERSPECTIVE, ICU DELERIUM, SHE
OBVIOUSLY REQUIRED QUITE A BIT
OF SEDATION AND PAIN CONTROL,
WAS ON PROLONGED MECHANICAL
VENTILATION AND LIKE MANY
PATIENTS IN THE ICU DEVELOPED
DELERIUM.
SHE ALSO DEVELOPED CRITICAL
ILLNESS MYOPATHY WHICH IS
CLAIRKTIZED BY
PRO--CHARACTERIZED BY PROFOUND
GENERALIZED WEAKNESS AND THAT
WAS CONFIRMED BY AN
ELECTROMILOGRAM THAT WAS
PERFORMED AND AN IMPORTANT PART
OF HER HISTORY IS THAT SHE HAD
THIS GENERALIZED PAIN WHICH WAS
IN SOME WAYS QUITE REFRACTORY
DESPITE EFFORTS BY OUR TEAM AND
THE PAIN AND PALLIATIVE CARE
TEAM WHICH WAS AN IMPORTANT
ASPECT OF HER COURSE.
FOR HER RESPIRATORY PERSPECTIVE.
SHE PRESENTED INITIAL LOAMACYY
AS I MENTIONED WITH PULL
MONITORARY EMBOL I, SHE QUEPED
RESPIRATORY FAIL AND YOU ARE
WHILE SHE HAD BRIEF PERIODS OFF
OF MECHANICAL INVENTORYALATION
SHE ULTIMATELY ENDED UP BEING
DEPENDENT FROM THE MIDDLE OF
MARCH TO THE END OF MAY THEY
MENTIONED HERE AND THAT TIME ON
HER VENTILATOR WAS COMPLICATED
BY BILATERAL PNEUMOTHOROUGH AND
UNFORTUNATELY IN THESE
PNEUMOTHOAR O CEASE, SHE
DEVELOPED A BRONCHOPLEURALL, AND
SO THERE WAS A PERSISTENT HOLE
IN HER LUNGS SO WHATEVER AIRT
CAME IN FROM THE VENTILATOR
WOULD DRAIN DIRECTLY OUT FROM
THOSE CHEST TUBES WHICH PRESENTS
A PROBLEM AS FAR AS ADEQUATELY
VENTILATING A PATIENT SO IN
CONSULTATION WITH OUR PULL
MONITORARY CREEINGS SHE HAD A
PALLIATIVE PROCEDURE PERFORMED
WHERE THEY WILL PLACE VALVES OR
ENDOBRONCHIAL VALVES WITHIN THE
BRONCHI WITHIN THE REGIONS OF
THE LUNGS THAT WERE THOUGHT
THORS CONTRIBUTE TO THAT AIR
LEAK.
AND IN EARLY MAY SHE HAD A
TRACHIOST ME PERFORMED WHICH IS
A SMALL HOLE IN THE NECK SO
INSTEAD OF THE THE ENDOTRACHEAL
TUBE GOING DOWN THE MOUTH AND
BACK THE THROAT, IT WAS A POINT
IN THE NECK THAT ALLOWS GREATER
COMFORT, PERHAPS LESS SEDATION
AND ALLOWS THE PATIENT TO BE A
BIT MORE INTERACTIVE WITH THE
CARE TEAM AND FAMILY MEMBERS.
FROM A CARDIOVASCULAR IMPORTANCE
AND COMPLICATIONS, SHE DEVELOPED
PROLONGED VASO-DILLATTORY SHOCK
AND THIS WAS--SHE WAS DEPEND END
ON EXTRANEOUS MEDICATIONS OR
BASAL REPRESSORS TO MAINTAIN A
REASONABLE BLOOD PRESSURE AND
SHE WAS ON THOSE VASOPPRESSORS
FROM THE 19th OF APRIL TO THE
TIME POINT THAT WE'RE TALKING
ABOUT AT THE END OF MAY WHICH IS
A REALLY EXTENDED PERIOD OF
TIME.
I WILL MENTION THERE WERE A
NUMBER OF INFECTIONS THAT WERE
IDENTIFIED AND TREATED BUT
ULTIMATELY THE UNDERLYING
ETIOLOGY OF THIS VASOPPRESSOR
DEPENDENT SHOCK WAS NOT
SOMETHING WE WERE ABLE TO
IDENTIFY OR REVERSE IN THE
PERIOD OF TIME THAT SHE WAS WITH
US.
FROM A RENAL PERSPECTIVE, SHE
DEVELOPED MULTIFACTORIAL AND
ANURIC RENAL FAILURE THAT
REQUIRED REPLACEMENT THERAPY AND
THAT BEGAN TOWARDS THE END OF
MARCH.
FROM A GASTROINTESTINAL
PERSPECTIVE, SHE HAD POOR
NUTRITION AND THIS WAS DESPITE
EFFORTS AT INTERERAL FEEDING AND
TUBE FEEDING VIA TOTAL TPN AND
PART OF THE CHALLENGE THERE IS
THAT OFTEN IN THE ICU BECAUSE OF
VARIOUS COMPLICATIONS, THE
FEEDING HAS TO BE INTERRUPTED
AND YOU WILL SEE THAT IN THE
SETTING OF THE TOTAL PARENTAL
NUTRITION, SHE DEVELOPED A
NUMBER OF BLOOD STREAM
INFECTIONS WITH BACTERIA AND
ALSO WITH FUNGUS CANDIDA, ALSO
FROM A GI PERSPECTIVE SHE HAD
PROBLEMS WITH GASTROINTESTINAL
BLEEDING THAT WAS TRANSFUSION
DEPENDENT AND THEN SHE GEPPED A
LARGE VOLUME OF DIARRHEA WHICH
WAS FOUND TO HAVE NOROVIRUS
POSITIVE--THE DIARRHEA WAS A
SIGNIFICANT PROBLEM FOR HER.
I MENTIONED FROM AN INFECTIOUS
DISEASES POINT OF VIEW, THAT SHE
HAD MULTIPLE INFECTIONS ON THE
BACTERIAL SIDE, AND SHE
DEVELOPED A MULTIDRUG RESISTANT
PSEUDOMOANIS PNEUMONIA, SHE HAD
BACTERIA REAMIAS WITH STAFF
AURUOUS AND BACTERIUM WHICH WAS
IS USUALLY A SKIN COLONY BUT
BECAUSE OF HER ONCOLOGY, SHE
DEVELOPED THESE, MORE
IMPORTANTLY SHE HAD VIRAL
INFECTIONS, INCLUDING ADEN O
VIRUS VIREMIA, FOR 60 DAYS WHICH
IS IN GENERAL NOT THAT SERIOUS
BUT IN HER IT WAS DIFFICULT TO
CONTROL AND CAN RESULT IN AN
ORGAN DYSFUNCTION DUE TO HER
IMMUNE SUPPRESSED STATE POST
TRANSPLANT.
SHE ALSO DEVELOPED BK VIRUS
VIREAMIA AND EVIDENCE OF
NIEWMONNITEIS AND AS I MENTIONED
SHE DEVELOPED THE
[INDISCERNIBLE].
FROM A HEMEAT O LOGIC
PERSPECTIVE WE HAD PROBLEMS BOTH
WITH CLOTTING BUT ALSO WITH
BLOODING.
I HAD MENTIONED THE BILATERAL
PULL MONITORARY EMBOL I, THOSE
WERE DEDRIVED FROM MULTIPLE DVT
PRESENT AND FOLLOWED OVER HER
COURSE.
AND UNFORTUNATELY SHE WAS
INTOLERANT TO THE REQUIRED
ANTICOAGULATION FOR THE
THROMBOSIS BECAUSE SHE HAD
EPISODES OF GASTROINTESTINAL
BLEEDING I MENTIONED AND THEN
SHE ALSO HAD A SINGLE EPISODE OF
SPONTANEOUS BLEEDING TO HER
CAVITY.
SO JUST A COUPLE NOTES BEFORE I
TRANSITION OFF OF THIS PORTION,
THIS IS A QUOTE FROM THE PAIN
AND PALLIATIVE CARE SERVICE FROM
THEIR NOTE ON MARCH 28th THAT
I WANT TO READ THE PATIENT I
WANT TO READ.
THE PATIENT REMAINS VERY
UNCOMFORTABLE MUCH OF THE TIME.
IF SHE IS NOT MOVING AND HER
GRANDMOTHER IS HOLDING HER HAND,
SHE IS OKAY, BUT WITH ANY
MOVEMENT, ANY WOUND CARE, SHE
HAS SEVERE PAIN.
AND OF COURSE OUR NURSES IN THE
ICU ARE THE 1S THAT ARE AT HER
BEDSIDE 24 HOURS A DAY AND THAT
WERE IMPACTED MOST DIRECTLY BY
HER PERSONAL--THE PATIENT'S
EXPERIENCES.
AND THEN ANOTHER IMPORTANT NOTE
CAME FROM THE PSYCHIATRY TEAM AT
THE END OF MAY.
HER COMMENTS WERE THIS: MEDICAL
TEAMS KNOW CONTINUE TO
COMMUNICATE WITH THE PATIENT
REGARDING HER MEDICAL CONDITION.
PROVIDING INFORMATION ABOUT THE
SERIOUS MEDICAL STATE.
IT'S DIFFICULT TO INTERPRET HER
REACTION TO THESE DISCUSSIONS AS
SHE IS NONVERBAL AND CAN ONLY
COMMUNICATE AT PRESENT WITH
GUESTURES.
SO IN SUMMARY, THIS CHALLENGING
PATIENT HAD SUSTAINED CRITICAL
ILLNESS AND MULTIORGAN FAILURE.
IN THE END AT THIS STAGE, WE
WERE TRULY UNABLE TO IDENTIFY A
REVERSIBLE CAUSE DESPITE HER
LONG ICU STATE, SHE HAD
SUFFERING SHE WAS EXPERIENCING
AND THE STAFF HAD EXPRESSED AND
WAS EXPRESSING MORAL DISTRESS
THAT ULTIMATELY CONTRIBUTED TO
THE ETHICS CONSULT.
AND WITH THAT I WILL STOP
SHARING AND I WILL HAND IT OVER
TO DOUG.
>> OKAY, GREAT.
THANKS SO MUCH, CAN FOLKS HEAR
ME AND SEE MY SCREEN?
>> YES.
>> THANKS TO THE DOCTORS FOR
THAT DESCRIPTION AND THANK YOU
TO DAVE FOR INVITING ME TODAY.
OBVIOUSLY THIS IS AN INCREDIBLE
LOAMACYY HARD CASE, SO MY
COMMENTS COME WITH HUMILITY AND
ALSO REALLY MINDFUL THAT I OF
COURSE DON'T KNOW ALL OF THE
DETAILS OF THE CASE.
SO JUST BY WAY OF DISCLOSURES,
THESE ARE MY FINANCIAL
DISCLOSURES, NONE OF WHICH
PRESENT WITH WHAT I WILL BE
PRESENTING.
SO DAVID ASKED ME TO TOUCH ON 4
MAIN AREAS AND IN THE NEXT 15
MINUTES OR SO I WOULD LIKE TO
PROVIDE THOUGHTS ABOUT THESE.
I WILL TALK ABOUT HOW DO WE
DETERMINE WHEN THE POTENTIAL
BENEFITS OF INTENSIVE CARE
JUSTIFY THE BURDENS, WE WILL
TALK THEN ABOUT HOW DO WE
EFFECTIVELY COMMUNICATE ON
UNKNOWN AND PRESUMED VERY LOW
BAH NON0 CHANCE OF RECOVERY.
THEN I WILL TALK ABOUT HOW LOW A
CHANCE OF MEANINGFUL RECOVERY IS
TOO LOW AND THEN FINALLY, I WILL
MAKE JUST A COUPLE POINTS ABOUT
THE IMPORTANCE OF ATTENDING TO
CLINICIANS MORAL DISTRESS AND A
CAVEAT IS THAT EACH OF THESE
TOPICS LENDS ITSELF TO AN HOUR
OR MUCH LONGER AND SO MY
COMMENTS WILL HOPEFULLY JUST
SERVE AS A LAUNCHING OFF POINT
FOR THE DISCUSSION.
ALL RIGHT, SO ON THE FIRST
QUESTION OF HOW DO WE DETERMINE
WHEN THE POTENTIAL BENEFITS OF
INTENSIVE CARE JUSTIFY THE
BURDENS?
YOU KNOW 1 SOURCE FOR GUIDANCE
ON THIS IS POLICY STATEMENTS
FROM PROFESSIONAL SOCIETIES AND
IN 2016, THE SOCIETY FOR
CRITICAL CARE IN A, IT S, DID
RELEASE A POLICY ON THIS
QUESTION, AND THEIR
RECOMMENDATION WAS IN THE VAST
MAJORITY OF CASES AND THERE'S A
CAVEAT THERE, CLINICIANS SHOULD
ENGAGE PATIENTS AND SURROGATES
IN A PROCESS OF SHARED DECISION
MAKING TO ANSWER THIS QUESTION
ABOUT ACCEPTABLE BURDEN BENEFIT
RATIOS.
AND I THINK--YOU KNOW JUST FOR
THIS AUDIENCE, I THINK IT'S
WORTH SPENDING TIME TALKING
ABOUT WHAT WE NEED BY SHARED
DECISION MAKING, SHARED DECISION
MAKING IS A PROCESS OF
COMMUNICATION IN WHICH PATIENTS
AND CLINICIANS WORK TOGETHER TO
MAKE HEALTHCARE DECISIONS, TAKE
INTO ACCOUNT BOTH THE MEDICAL
FACTS AS WELL AS WHAT'S KNOWN
ABOUT THE PATIENT'S VALUES,
GOALS AND PREFERENCES.
SORRY.
FROM AN ETHICAL STANDPOINT, THE
ARGUMENT IS THAT WE MANIFEST
RESPECT FOR THE PATIENT AS A
PERSON BY ALLOWING PATIENTS OR
THEIR SURROGATES TO BE INVOLVED
IN CHOOSING AMONG AVAILABLE AND
REASONABLE TREATMENT OPTIONS
WHEN THERE ARE DIFFERENT RISKS
AND BENEFITS OF THOSE OPTIONS
AND THE OTHER THING I THINK IS
REALLY IMPORTANT HERE IS THAT
THIS DOCUMENT CONTAINED A CAVEAT
THAT THE POLICY STATEMENT THAT
PATIENTS OR SURROGATES ARE
TRUSTING AND THERE MAY BE
CIRCUMSTANCES WHERE THE
CLINICIAN SHOULD REFUSE TO
PROVIDE THOSE TREATMENTS AND WE
WILL TALK ABOUT THAT CAVEAT
CARVED OUT IN A FEW MINUTES WHEN
I ADDRESS THE THIRD QUESTION
POSED BUT THE FIRST QUESTION ON
THE HIGH LEVEL, I WANT TO
REFLECT THAT WE SHOULD ALLOW
PATIENTS OR THEIR SURROGATES IN
GENERAL TO DETERMINE WHEN THE
POTENTIAL BENITS OF ICU CARE
JUSTIFY THE BURDENS.
UNFORTUNATELY, IN REALITY WE
OFTEN FALL SHORT OF ACHIEVING
THIS ETHICAL GOAL OF ROBUSTLY
INVOLVES PATIENTS AND SURROGATES
AND SO FOR EXAMPLE, THE SCCM
RECOMMENDS THE CONDUCT OF
ROUTINE INTERDISCIPLINARY
MEETINGS TO PROMOTE CARE,
GENERALLY IN THE ICU STAY AND
ITERATIVELY THROUGHOUT THE
COURSE OF THE ICU STAY, BUT OVER
THE YEARS A NUMBER OF STUDIES
HAVE FOUND THAT LESS THAN HALF
OF CRITICALLY ILL PATIENTS HAVE
FAMILY MEETINGS IN THE FITTER 72
HOURS OF ICU ADMISSION AND ALSO,
WHEN YOU REALLY DIG DEEP INTO
WHAT'S HAPPENING IN THESE
MEETINGS, USING AUDIO
RECORDINGS, MY GROUP AND OTHERS
HAVE FOUND SERIOUS SHORT COMING
IN THE PROCESS OF SHARED
DECISION MAKING.
SO FOR EXAMPLE, AMONG 250 AUDIO
RECORDED FAMILY MEETINGS FOR
PATIENTS AT VERY HIGH RISK OF
DEATH AND ICUs, WE FOUND THAT
25% OF THESE CONVERSATIONS HAVE
NO DISCUSSION ABOUT THE
PATIENT'S VALUES AND PREFERENCES
AND THEN IN A SEPARATE ANALYSIS
OF AN EVEN SICKER COHORT IN
WHICH 72% OF THE PATIENTS DIED
WE FOUND IN ALMOST THAFUL HALF
OF THESE FAMILY MEETINGS, THE
CLINICIANS DIDN'T PUT FORWARD AS
AN OPTION TO INTENSIVE CARE A
COMFORT-FOCUSED PLAN OF CARE BUT
IN THE LAST COUPLE DECADES
THERE'S BEEN IMPORTANT PROGRESS
IN OVERCOMING THESE
COMMUNICATION BREAK DOWNS AND IN
PARTICULAR THERE HAVE BEEN
INTERVENTIONS DEVELOPED TO
PROMOTE TIMELY AND CONSISTENT
COMMUNICATION ABOUT PATIENTS
VALUES AND PREFERENCES, SO WE
DON'T REALLY HAVE TIME TO DELVE
INTO THE SPECIFICS OF ALL OF
THEM BUT I'VE LISTED 3 STUDIES
HERE.
EACH OF WHICH LED TO IMPORTANT
IMPROVEMENTS AND OUTCOMES, 1 WAS
AN INTERVENGAL STUDY LED BY
RANDY CURTIS THAT USED A TEAM
SOMEBODY WHOSE ROLE WAS TO
ORGANIZE FAMILY MEETD MEETINGS
AND SUPPORT FAMILY MEETING
DURING THOSE MEETINGS AND MAKING
SURE THEY'RE HAPPENING ON AND
CONTAIN INFORMATION AND ANOTHER
LED BY LARRY SNYDER MAN, TO
ACCOMPLISH RELATIVELY SIMILAR
GOALS WITH ARGUABLILY A HIGHER
LEVEL OF ETHICS EXPERTISE FOR
THE VALUE CONFLICTS AND THE
THIRD STUDY HERE IS 1 THAT I LED
THAT WAS RATHER THAN BEING
DELIVERED BY AN EXTERNAL
CONSULTANT OR A WERE TEAM MEMBER
WE TRAIN THE EXISTING ICU TEAM
TO DELIVER A FAMILY STRUCTURED
SUPPORT PROTOCOL.
AND JUST TO GIVE YOU A FLAVOR OF
WHAT THESE INTERVENTIONS LOOK
LIKE AND I AM TALK ABOUT THE
INTERVENTION WE DEVELOPED AND
DEPLOYED.
THIS WAS AS I SAID A FAMILY
SUPPORT INTERVENTION DELIVERED
BY THE ICU TEAM.
WHAT WAS UNIQUE IS THAT IT GAVE
A MUCH LARGER ROLE IN SUPPORTING
FAMILIES TO ICU NURSES AND ALSO
GAVE THEM A MUCH MORE
EMPOWERMENT TO MAKE SURE THAT
TIMELY COMMUNICATION WAS
HAPPENING AND SO THESE NURSES
WENT THROUGH A FAIRLY EXTENSIVE
TRAINING TO LEARN A PARTICULAR
TECHNIQUE OF PROVIDING DAILY
STRUCTURED EMOTIONAL AND
PSYCHOLOGICAL SUPPORT TO
FAMILIES, TO SCHEDULING THESE
FAMILY MEETINGS WITHIN 48 HOURS
OF ENROLLMENT AND AT LEAST
WEEKLY THEREAFTER AND ALSO
PREPARING FAMILIES FOR EACH
FAMILY MEETING USING WHAT'S
CALLED A QUESTION PROMPT LIST
AND TALKING THIS THROUGH WITH
THEM IN ADVANCE OF THE MEETING.
AND THIS IS A SCREEN SHOT OF
THAT QUESTION, AND YOU WILL SEE
THAT FAMILIES WERE ENCOURAGED TO
WRITE DOWN IN ADVANCE AND THINK
THROUGH WHAT ARE THE CORE
QUESTIONS FOR THE TEAM AND THEN
THEY WERE--WALKED THROUGH
ESSENTIALLY QUESTIONS THAT ARE
COMMON FOR FAMILIES AND ICU
SETTINGS AND THIS WAS A BIT OF A
NUDGE--AND THEN ASKING ABOUT
WHAT TREATMENT OPTIONS ARE
AVAILABLE.
AND AS I SAID, THE INTERVENTION
WAS ASSOCIATED WITH SOME
IMPORTANT IMPROVEMENTS IN
PATIENT AND FAMILY ELF OUTCOMES.
SURROGATES AT 3 MONTH FOLLOW UP
RATED OR NOTED SIGNIFICANTLY
INCREASED RATINGS OF THE PATIENT
AND FAMILY CENTERED HADNESS EVER
CARE AND ALSO THE--FAMILY
CENTEREDNESS OF CARE AND ALSO
THE QUALITY OF CARE THEY WERE
MAKING AND THE IT WAS A SHORTER
DURATION OF LIFE SUPPORT AMONG
PATIENT WHO IS DIED AS WELL AS
DECREASED TOTAL HOSPITALIZATION
COSTS.
THE INTERVENTION DID NOT HAVE
ANY EFFECT ON SYMPTOMS OF
DEPRESSION, ANXIETY OR PTSD.
OKAY, SO, THAT'S JUST SORT OF
HIGH LEVEL CONVERSATION ABOUT
ENGAGING PATIENTS AND FAMILIES
AND DECISION MAKING AND ICUs.
ON TO THIS NARROWER QUESTION OF
HOW DO WE EFFECTIVELY
COMMUNICATE AN UNKNOWN AND
PRESUMABLY VERY LOW BUT NON0
CHANCE OF RECOVERY.
AND SO THIS IS AN INCREDIBLE
LOAMACYY HARD QUESTION, THE
ANSWER TO WHICH DOES NOT EXIST
IMPERICALLY TO MY KNOWLEDGE BUT
I WILL SHARE THOUGHTS.
YOU KNOW AT THE HIGH LEVEL, I
THINK MANY PHYSICIAN VS HAD THE
EXPERIENCE WHERE THEY THINK
THEY'VE DONE A GREAT JOB IN A
MEETING WITH A FAMILY OF
CONVEYING HOW POOR THE PATIENT'S
PROGNOSIS IS ONLY TO LEAVE WITH
THE FEELING THAT MAYBE THE
FAMILY DIDN'T GET IT.
AND I THINK THE IMPULSE MANY OF
US HAVE IS TO ASCRIBE THE
PROBLEM OF A THE FAILURE OF A
FAMILY TO COMPREHEND AND
COGNITIVELY UNDERSTAND WHAT WAS
SAID AND THE FOLLOW ON IMPULSES
TO SAY THE SAME THING, MAYBE
SLOWER AND MAYBE LOUDER, LARGELY
BECAUSE I WITH WE DON'T WHAT
ELSE TO DO.
I WOULD ENCOURAGE THAT IS
PROBABLY NOT THE RIGHT MENTAL
MODEL TO TAKE INTO THESE CASES.
PART OF THE REASON I SAY THIS IS
THAT THE RESULTS OF A STUDY THAT
[INDISCERNIBLE] LED NOW ABOUT 10
YEARS AGO IN WHICH HE ENROLLED
THE SURROGATES OF 80
INCAPACITATED CRITICALLY ILL
PATIENTS WHILE THEY WERE IN ICU
AND IN RANDOM ORDER PRESENTED TO
THEM 16 DIFFERENT PROGNOSTIC
STATEMENTS AND ASKED THE SIMPLE
QUESTION, DO THEY UNDERSTAND IT?
AND ASKED THEM TO RECORD THEIR
INTERPRETATION OF THE STATEMENTS
ON A PROBABILITY SCALE.
AND SO ON THE LEFT SIDE OF THE
SLIDE ARE THE 16 PROGNOSTIC
STATEMENTS IN ORDER FROM
ESSENTIALLY THE BEST PROGNOSIS
ON TOP, TO THE WORST PROGNOSIS
ON BOTTOM AND THEN IN GRAY YOU
WILL SEE 3 DIFFERENT PROGNOSTIC
STATEMENTS AND 90% CHANCE OF
SURVIVING, 60% CHANCE OF
SURVIVING AND 5%.
SO HERE'S WHAT WE FOUND, JUST
NOTE THAT THE DIAMONDS ARE THE
MEDIAN RESPONSE, THE Xs ARE
THE MEAN AND THE BARS IN BLUE
ARE THE INNER CORTILE, AND THE
LINES ARE THE RANGE OF RESONSS,
SO LOOKING AT 90% CHANCE OF
SURVIVAL STATEMENT, YOU CAN SEE
THAT PEOPLE GENERALLY BUT NOT
ALWAYS INTERPRETED A 90% CHANCE
OF SURVIVAL AS INDEED 90%.
AND THIS FINDINGS SUGGESTS TO ME
THAT MOST SURROGATES CAN
UNDERSTAND THESE KIND OF SIMPLE
RISK OR SIMPLE PROGNOSTIC
STATEMENTS.
HOWEVER, IF YOU LOOK AT THEIR
RESPONSES TO THE LITTLER 2
NIEWMERRIC STATEMENTS SHADED IN
GRAY, YOU WILL SEE THAT AS THE
PROGNOSIS WORSENS, THE
SURROGATES INTERPRETATIONS
BECOME MORE OPTIMISTIC SO
LOOKING AT THE 5% CHANCE OF
SURVIVAL AND YOU SEE THAT THE
MEDIAN INTERPRETATION WAS A 15%
CHANCE OF SURVIVING AND TO ME
THIS FINDING SUGGESTS THERE'S
SOMETHING GOING ON JUST BEYOND
MISSED COMPREHENSION AND SO
DURING THE STUDY IT WAS A MIXED
METHOD STUDY AND WE CONDUCTED
STRUCTURED INTERVIEWS WITH THE
SURROGATES WHO OPTIMISTICALLY
INTERPRETED THE GRIM PROGNOSTIC
STATEMENTS AND ESSENTIALLY WHAT
WE DID IS PUT THE RESPONSES DOWN
IN FRONT OF THEM AND ASKED THEM
TO EXPLAIN SORT OF HOW THEY CAME
TO THEIR--RESPONSE THEY MARKED
ON THE PAGE.
AND THE CORE OF THE FINDINGS
THAT CAME OUT OF THIS WERE THAT
THIS WAS NOT ABOUT
MISUNDERSTANDING, THIS WAS
REALLY WHEN SURROGATES
REGISTERED AN OPTIMISTIC
INTERPRETATION OF A PROGNOSTIC
STATEMENT, IT WAS NOT THAT THEY
MISUNDERSTOOD, INSTEAD THEY WERE
DOING VARIOUS THINGS WITH IT, 1
WAS MANY OF THEM FELT THE NEED
TO EXPRESS OPTICAL IMAGES MI. SO
1 SAID I GUESS I UNDERSTAND THAT
THE PATIENT MAY DIE, I JUST HAVE
TO HELP ME.
ANOTHER OR ANOTHER GROUP OF
RESPONSES WAS AROUND BELIEVING
THAT THE INDIVIDUAL PATIENT'S
OUTCOME WOULD LIKELY BE BETTER
THAN THE PREDICTED OUTCOME, THIS
TRACKS WITH WHAT'S CALLED THE
UNOPTIMISM BIAS OR THE LAKE
[INDISCERNIBLE] EFFECT, AND THE
THEN THE THIRD GROUP OF
RESPONSES WASENTIOUS ESSENTIALLY
INDIVIDUALS EXPRESSING A
DISBELIEF OF PHYSICIANS ABILITY
TO PROGNOSTICATE AND THESE
FINDINGS REALLY MIRROR THOSE
FROM NUMEROUS STUDIES OUTSIDE
THE CONTEXT OF HOW INDIVIDUALS
RESPOND TO WHAT WE MIELT CALL A
THREATENING HEALTH INFORMATION.
SO PSYCHOLOGISTS HAVE
CHARACTERIZE A PHENOMENON CALLED
DEFENSIVE PROCESSING OF
PERSONALLY RELEVANT--PROCESS THE
INFORMATION IN A BIASED WAY
WHICH IS TO SAY THE SORT OF
MINIMIZE THE RISK THAT'S
INVOLVED.
AND SO I THINK THE IMPORTANT
MESSAGE HERE IS THAT RATHER THAN
THE ISSUE BEING SOLELY THAT
SURROGATES CAN'T UNDERSTAND
PROGNOSTIC INFORMATION, IS THAT
THERE ARE PSYCHOLOGICAL
MECHANISMS AT PLAY THAT CAUSE
THEM TO INTERPRET THESE
STATEMENTS IN A MORE OPTIMISTIC
WAY THAN THE CLINICIAN, INTENDS,
SO WHAT ARE WE GOING TO DO ABOUT
THIS.
TO GET BACK TO DAVE'S QUESTION
ABOUT HOW TO CONVEY THIS AND
AGAIN THERE'S NOT TIME TO FULLY
UNPACK THIS BUT WHAT I WOULD SAY
IS A COUPLE THINGS.
FIRST, I THINK RATHER THAN
ASCRIBING THE MISPERCEPTIONS TO
AND WE SHOULD BE ASKING
OURSELVES THE BROADER QUESTION
OF WHAT'S BEING ON THE SAME PAGE
WITH THE FAMILY?
AND TO ANSWER THAT, THERE ARE A
NUMBER OF DIFFERENT QUESTIONS
THAT I THINK ARE EMBEDDED IN
THERE, YOU KNOW THE FIRST IS
REALLY HAVE I ADDRESSED
[INDISCERNIBLE] AND SURPRISING
HOW OFTEN THEY HAVE ADDRESSED
PROGNOSIS BUT HAVEN'T AND IF
THAT'S THE CASE, THEN THE CASE
IS TO DISCLOSE PROGNOSIS AND SO,
THERE'S NOT CLEAR EVIDENCE ABOUT
THE MOST EFFECTIVE LANGUAGE TO
DO THIS SO IN THAT CONTEXT, I
FAVOR VERY PLAIN LANGUAGE, AND
SO IN THE CASE THAT WAS
PRESENTED IF THE CLINICIANS
BELIEVE THAT THE CHANCES FOR
SURVIVAL ARE FOR EXAMPLE VERY
CLOSE TO NIL BUT NOT QUITE 0, I
MAY SAY SOMETHING LIKE ALTHOUGH
I CAN'T PREDICT THE FUTURE FOR
ABSOLUTE CERTAINTY, WE ARE ALL
VERY CONCERNED THAT THERE'S
ALMOST NO CHANCE THAT SHE'LL
SURVIVE AND THEN STOP BECAUSE
THAT IS AN INCREDIBLE LOAMACYY
EMOTIONAL AND PSYCHOLOGICALLY
LADEN THING TO SAY AND THEN THE
WORK THEREAFTER AND TO FIGURE
OUT HAS IT LANDED SO THINKING
ABOUT AND ASKING 1S SELF-HAS
HAVE MISUNDERSTOOD WHAT I SAID
IN A FACTUAL WAY IS AN IMPORTANT
NEXT STEP AND CHECKING FOR
UNDERSTANDING IS AN IMPORTANT
ASPECT OF THIS AND IF THEY HAVE
DIFFERENT WAYS TO FRAME IT IN
WAYS THAT ARE COMPREHENSIBLE AND
BY AND LARGE THE ISSUE IS
NOT--IS NOT ABOUT COMPREHENSION
AND INSTEAD, AND LOOKING FOR
OTHER CONSIDERATIONS THAT ARE
CAUSING THE ISSUE, ARE THERE
RELIGIOUS BELIEFS FOR EXAMPLE
AND IF SO, POTENTIALLY AND AS I
SAID, MORE OPTIMISM, BIAS AND
GENERALIZATION, AND FOR THESE
IT'S HARDER TO KNOW WHAT TO DO
WITH IT BUT THESE ARE WHERE
THEY'RE ESPECIALLY HELPFUL FOR
PROVIDING INTENSIVE PSYCHOSOCIAL
SUPPORTIVE AND HELPING FAMILIES
MOVE THROUGH A PROCESS OF
ACCEPTING THIS GRIM INFORMATION.
MOVING ON TO THE THIRD QUESTION,
HOW LOW A CHANCE OF RECOVER
SETOO LOW AND I THINK 1 WAY TO
RE--IS TO REFRAME IT TO BE ABOUT
WHEN SHOULD A PARTICULAR COURSE
OF TREATMENT NOT BE PROVIDED
EVEN IF THE FAMILY OR PATIENT IS
REQUESTING IT.
AND I THINK HELPFUL INSIGHT ON
THIS QUESTION COMES FROM AND CAN
BE FOUND AT THE EVOLUTION OF
POLICIES AND PRACTICES ON
RESPONDING TO REQUESTS FOR
WHAT'S BEEN CALLED FUTILE OR
INAPPROPRIATE EXTREME.
SO LARRY SNYDER MAN IN THE EARLY
90S CHAMPIONED SOME EFFORTS TO
DETERMINE WHEN TREATMENT SHOULD
NOT BE PROVIDED ON THE GROUNDS
OF FERTILITY AND HE ADVOCATED
FOR WHAT HE CALLED USING A
QUANTITATIVE DEFINITION OF
FUTILITY GROUND INDEED A
UNIDIMENSIONAL CONSTRUCT TO
WHICH IS TO SAY THE LIKELIHOOD
OF BENEFIT AND HE ARGUED THAT
TREATMENT SHOULD BE CONSIDERED
FUTILE IF THE TREATMENT SHOWED
LESS THAN A 1%'VE--SORRY LESS
THAN A 100 PERCENT CHANCE OF THE
BENEFITING THE PATIENT AND HE
ARGUED THESE DECISIONS SHOULD BE
LEFT TO THE TREATING CLINICIANS
TO MAKE WITH LITTLE OR MOW
REQUIREMENT FOR IF WILL FAMILY
DISAGREES.
THIS APPROACH HAS REALLY
RECEIVED A GREAT DEAL OF
CRITICISM OVER THE YEARS AND IS
FRANKLY NOT BEEN WIDELY ADOPTED.
SOME OF THE KEY CRITICISMS HAVE
BEEN THAT IN REALITY, THERE ARE
RARELY THE NEEDED IMPERICAL DATA
TO MAKE THESE PROGNOSTICATIONS
WITH APPROPRIATE CONFIDENCE AND
ALSO INSUFFICIENT NEED FOR SAFE
GUARDS TO PREVENT ABUSE AND THEN
ALSO A CONCERN THAT THERE'S A
LACK OF ATTENTION TO OTHER
CONSIDERATIONS, BEYOND THE MERE
PROBABILITY OF SURVIVE THAT MAY
ALSO BE RELEVANT TO TREATMENT IS
INAPPROPRIATE OR NOT.
AND SO, BRODY AROUND THE SAME
TIME WAS 1 OF THE LEADING VOICES
FOR ARGUING FOR A STARKLY
DIFFERENT APPROACH TO EXPHIEDER
MANS AND BRODY ARGUED THAT WE
SHOULD CONCEPTUALIZE THESE AS
VALUE-LADEN AND SHOULD BE
CONSIDERING MEDICALLY
INAPPROPRIATE WHEN THE
CLINICIANS CAN THE INSTITUTION
JUDGE THAT THE TREATMENT IS WHAT
THEY CALLED INCOMPATIBLE WITH
THE MAINTENANCE OF PROFESSIONAL
INTEGRITY AND PROCEEDY
ACCURACIED THAT MULTIPLE
CONSIDERATIONS ARE RELEVANT TO
THIS DETERMINE NATION AND IN
ESSENCE HE ARGUED THAT TO CALL
TREATMENT MEDICALLY
INAPPROPRIATE THERE SHOULD BE A
WIDELY HELD VIEW--A VERY STRONG
EMPHASIS ON PROCEDURAL FAIRNESS
AND INCLUDED REQUIREMENTINGS FOR
INSTITUTIONAL REVIEW OF THE
CASES FOR OFFERING FAMILY THE
OPTION TO ATTEMPT TO TRANSFER TO
ANOTHER INSTITUTION THAT MIGHT
BE WILLING TO PROVIDE THE
TREATMENTS AND ALSO AT THE END
OF THE PROCESS, INFORMING THE
FAMILY OF THEIR RIGHT TO PURSUE
JUDICIAL INTERVENTION TO COMPEL
THE CLINICIANS TO PROVIDE
TREATMENT.
AND IN FACT TO MAKE A LONG STORY
SHORT, BRODY'S THOUGHTS ARE
GUIDE LINES FOR WHEN TREATMENT
IS INVOARPT AND WHAT I'M SHOWING
IS AN AMA ARTICLE AS WELL AS
ADIEVERGZAL GUIDELINES, BOTH OF
THESE REYECT THE USE OF A
UNIDIMENSION ALGORITHMS
QUANTITATIVE DEFINITION OF
FUTILITY AND ALL THINGS
CONSIDERED JUDGMENTS ABOUT
WHETHER THE BURDENS OF TREATMENT
ARE GROSSLY DISPROPORTIONATE TO
THE BENEFITS AND AGAIN BOTH OF
THESE PLACE A STRONG EMPHASIS ON
PUTTING IN PLACE A FAIR PROCESS
OF DISPUTE RESOLUTION, LIKE WHAT
BRODY CALLED FOR.
THERE'S A LOT TO SAY ABOUT THE
PARTICULARS OF THIS PARTICULAR
THE CONCEPT OF PROFESSIONAL
INTEGRITY AND MAYBE WE CAN COME
BACK TO THAT IN THE DISCUSSION
AND FINALLY IN THE LAST COUPLE
MINUTES I WANT TO SAY A FEW
THINGS ABOUT RESPONDING TO
CLINICIANS, THE STRESS ABOUT
CARING FOR PATIENTS IN THIS
SITUATION LIKE WHAT WAS RAISED
IN THIS CASE.
SO FROM THE CASE PRESENTATION,
IT SOWBDS LIKE THERE WERE AT
LEAST SOME OF THE NURSES
INVOLVED IN THE PATIENT'S CARE
THAT EXPRESSED MORAL DISTRESS
ABOUT THE SITUATION AND FOR
CLARITY, I THINK IT'S WORTH
TAKING A MEMORY CLONE TONIGHT
DEFINE WHAT WE MINE BY MORAL
DISTRESS AND ELIZABETH AT
EPSTEIN HAS DONE A LOT OF THIS
WORK, SHE SAYS WHEN AN
INDIVIDUAL IESHES DENTIFYS THE
ETHIC LOAMACYY APPROPRIATE
ACTION, BUT THAT ACTION CANNOT
BE TAKEN AND I'VE LISTED HERE
THE COMMON CAUSES IN THE ICU
SETTING THAT ARE GLEANED FROM A
VARIETY OF STUDIES, THE
TREATMENT IS JUDGED TO BE
BURDENSOME IS NOT IN THE
PATIENT'S BEST INTEREST, THERE'S
INADEQUATE PAIN CONTROL,
INADQUAITD PAIN COMMUNICATION
ABOUT DIAGNOSIS OR FALSE HOPE
GIVEN DURING THE COMMUNICATIONS
TO THE PATIENT OR FAMILY AND
OTHER THINGS LIKE INADEQUATE
STAFFING TO TAKE CARE OF THE
PATIENT'S NEEDS FULLY.
LET ME JUST SAY 1 MORE THING
ABOUT THIS, I WOULD LIKE TO JUST
FLAG AN INTERESTING CONCEPTUAL
ISSUE ABOUT THE CONSTRUCT OF
MORAL DISTRESS WHICH IS THAT THE
DEFINITION SEEMS TO REQUIRE THAT
THE ETHICALLY APPROPRIATE ACTION
IS CLEAR AND NOT BEING TAKEN AND
THIS AND AND THERE'S LEGITIMATE
DISAGREEMENT ABOUT ONGOING
TREATMENT IS IN FACT ETHICALLY
APPROPRIATE AND THEREFORE I
THINK THE TERM NORMORRAL
DISTRESS MAY NOT FULLY CAPTURE
THE COMPLEXITY OF THE SITUATION.
THE OTHER THING I WANT TO SAY IS
THAT ANOTHER REALITY OF ICU
CARE, IS THAT I THINK DAVE
MENTIONED THIS IN HIS OPENING
REMARKS THAT PROVIDING
APPROPRIATE ICU CARE CAN BE
INCREDIBLE LOAMACYY DISTRESSING
TO THE CLINICIANS DOING THE
HANDS ON WORK AND 1 WAY TO
CONCEPTUALIZE THIS IS A
HYPOTHETICAL NOT TOO DISSIMILAR
FROM THIS CASE, CONSIDER A CASE
WHERE THE CLINICIANS ALL AGREE
AS A 1% CHANCE OF SURVIVAL AND
THE PATIENT'S HAS THE DECISION
MAKING CAPACITY AND REQUESTS THE
TREATMENT EVEN THOUGH THE
TRIEMENT WILL COME WITH
SIGNIFICANT PAIN.
SO THE EMOTIONAL BURDEN OF THESE
CASES ON FRONT LINE CLINICIANS
REALLY COMES UP AND COMES TO THE
FORE WHEN YOU STEP BACK AND SEE
THAT THE NUMBERS NEEDED TO TREAT
THESE CASES ASK IS A HUNDRED,
WHICH IS TO SAY, YOU WILL HAVE
TO TREAT A HUNDRED PATIENTS OR
PUT A HUNDRED SIMILAR PATIENTS
THROUGH THIS BURDENSOME COURSE
OF ICU CARE FOR 1 TO SURVIVE.
AND SO A 99% OF THE CASES, THE
BEDSIDE NURSE WILL BE DOING MANY
OF THESE PAINFUL THINGS TO THE
PATIENT AND THE PATIENT WILL DIE
ANYWAY.
ASK I WOULD JUST POINT OUT THAT
ALTHOUGH THIS MAY BE--MAY WELL
BE CONSIDERED APPROPRIATE CARE
IN TERMS OF ANY INDIVIDUAL
PATIENTS BURDEN BENEFIT RATIO,
THE PROVISION OF THIS CARE, BY
THE PERSON WHOSE LAYING HANDS ON
THE PATIENT CAN BE MASSIVELY
DISTRACTING.
AND THIS IS AGAIN I THINK AND
IMPORTANT FROM AN INSTITUTIONAL
STANDPOINT FOR MANAGING THESE
CASES ASK REALLY TAKING
SERIOUSLY, THE CONCERNS THAT ARE
BEING RAISED BY THE CLINICIANS,
BOTH FOR THE PATIENT'S GOOD BUT
ALSO FOR THE CLINICIANS WELL
BEING AND FOR THE INTEGRITY OF
THE CULTURE IN THAT ICU.
AND THE KINDS OF INTERVENTIONS
THAT ARE LIKELY TO BE HELPFUL
ARE BROADLY SPEAKING STRATEGIES
TO IDENTIFY AND METIGATE THE
ROOT CAUSES OFLET DISTRESS IF
POSSIBLE AND THIS COULD BE
ACCOMPLISHED THROUGH A SKILLFUL
ETHICS CONSULT AND SOME ALSO,
INSTITUTIONS HAVE WHAT'S BEEN
CALLED A MORAL DISTRESS CONSULT
SERVICE AND THESE CONSULTATIONS
GENERALLY INVOLVE DOING THINGS
LIKE INSURING THAT THERE ARE
CLEAR PROGNOSTIC DISCUSSIONS AND
DISCLOSURE OF TREATMENT OPTIONS
OTHER THAN INTENSIVE CARE AND
THEN IF TREATMENT IS JUDGED TO
BE APPROPRIATE AND CONTINUED
INSURING THAT ALL THE ICU TEAM
MEMBERS--IN PLACE FOR OPTIMAL
PERIPROCEDURAL PAIN CONTROL AND
THEN I THINK THE LAST 2 HERE ARE
PARTICULARLY IMPORTANT, MAKING
SURE THAT AS NURSES AND
CLINICIANS ARE PROVIDING THIS
CARE LONGITUDINALLY THAT THEY
ARE RECEIVING INTENSIVE SUPPORT
BECAUSE IT'S SO DISTRESSING AND
FINALLY THE CASES IN WHICH
NURSES OR OTHER CLINICIANS SAY,
I UNDERSTAND THIS IS ACCEPTED
THERAPY BUT I JUST HAVE A
CONSCIOUS BASED OBJECTION TO IT,
THERE SHOULD BE PROCESSES IN
PLACE TO COMBAT THOSE IF
POSSIBLE.
ALL RIGHT, SO, LAST THING, AND I
WILL JUST CLOSE BY SAYING FOR
ANYONE WHO WANTS TO THINK MORE
ABOUT THE PSYCHOLOGICAL
DIMENSIONS OF WHY ICU TEAMS AND
ONCOLOGY TEAMS SOMETIMES HAVE
FAIRLY DEEP DISAGREEMENTS ABOUT
WHAT CONSTITUTES APPROPRIATE
CARE, A MUST READ OF STEWART
YOUNGENER THOUGHTFUL EXPLORATION
OF THIS TOPIC NOW ALMOST 35
YEARS AGO AND I REREAD THIS IN
PREPARATION FOR TODAY AND THE
THEMES HE HITS ON, ARE
ESSENTIALLY ENTIRELY RELEVANT TO
CONTEMRARE PRACTICE.
I WILL STOP THERE AND I REALLY
LOOK FORWARD TO THE DISCUSSION.
THANKS SO MUCH.
>> THIS IS FABULOUS, THANKS VERY
MUCH FOR THE COMMENTS DOUG.
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SITE.
SO FIRST I WANT TO START WITH
JUST BRIEFLY MY INVOLVEMENT WITH
THIS WHICH WAS MINIMAL COMPARED
TO ALEX'S AND DANS BUT SOME
PEOPLE IN THE CHA WERE ASKING
QUESTIONS ABOUT ADVANCE
DIRECTIVES, WHAT DO WE KNOW
ABOUT THE PATIENT'S WISHES, I
THINK ALEX MENTIONED THIS
BRIEFLY, INITIALLY THE PATIENT
WAS THE 1 WHO SORT OF INITIATED
MOVING TOWARDS MORE AGGRESSIVE
CARE AND WANTED IT AND WANTED IT
FOR A LONG TIME AND WAS
SUPPORTIVE OF IT EVEN WHEN THERE
WERE PROBLEMS.
NOW AS THINGS WENT LATER THERE
WERE TIMES WHEN SHE WOULD REFUSE
CERTAIN THINGS BUT IT OFTEN
WASN'T CLEAR IF THAT INVOLVED
HER WANTING TO REFUSE THOSE
SPECIFIC PROCEDURES, OR IF SHE
WAS STARTING TO QUESTION THE
WHOLE GOAL OF CARE.
AND SO, WITH THAT, I WOULD JUST,
YOU MENTIONED--I WANT TO BRING
IT BACK AND MAYBE TIE TOGETHER
AND BRODY'S VIEW ON THIS.
BECAUSE I CAN IMAGINE, JUST IF
YOU HAVE THOUGHTS ON THIS, I CAN
IMAGINE IF I WAS 1 OF THOSE
NURSES, I WASN'T THANKFULLY
BECAUSE I THINK WHAT THEY WERE
DOING WAS HEROIC AND INCREDIBLY
DIFFICULT, BUT I HAD BEEN 1 OF
THOSE NURSES AND YOU TOLD ME
OKAY, YOU WILL HAVE 500 PATIENTS
LIKE THIS, YOU WILL TURN THEM 10
TIMES A DAY, THEY'RE GOING TO
SCREAM IN PAIN AND CRY AND YOU
WILL DO IT FOR ALL 500 OF THEM,
1 OF THEM OR 2 OF THEM ARE GOING
TO GET BETTER, AND BE REALLY
THANKFUL, AND THE OTHERS ARE
BASICALLY GOING TO BE TORTURING
BEFORE THEY DIE.
IF YOU GAVE ME THIS AGAINST MY
PROFESSIONAL CONSCIOUS I CAN'T
TORTURE 500 PATIENTS TO HELP 1
OR 2, I WILL NOT DO IT, WE CAN'T
GIVE THIS CARE, BUT IT I WAS 1
OF THOSE PATIENTS AND YOU SAID
OKAY, DAVE, YOU'RE 20 YEARS OLD,
HAVE YOU 2 CHOICES YOU CAN TRY
THIS AND YOU CAN LIVE OR YOU END
YOUR LIFE, I DON'T KNOW WHAT I
WOULD DO TBH THIS SITUATION, I
CAN IMAGINE SAYING I WANT TO
GIVE IT A TRY.
SO IS THERE A WAY TO RECONCILE
THOSE PERSPECTIVES AND IS THAT A
WIN OR DEPEND ON CIRCUMSTANCES?
>> DAVE, IT'S A GREAT QUESTION,
I MEAN THE--THE REALITY, WE HAVE
A HUGE PROBLEM BECAUSE NO 1
WOULD WANT THIS.
IT'S HORRIBLE AND I MUST SAY, I
WORK IN 1 OF THE COVID UNITS AND
IT'S NOT QUITE AS BAD AS YOU
DESCRIBE BUT WHEN YOU WORK IN
THE COVID UNIT AND THE ONLY
PATIENTS YOU TAKE CARE OF ARE
THE PEOPLE WHO GET INTERNATIONAL
CLASSIFICATION BAITED AND
REMEMBER THE MORTALITY RATE IS
80% OR SO SO WE'RE GETTING VERY
CLOSE IN ICUs WHERE WE'RE
LEADING TO TREAT SEVERAL
PATIENTS TO SAVE 1 AND THAT IS
INCREDIBLY HARD ON THE STAFF.
THAT IS A MUCH WORSE MORTALITY
RATE THAN WHAT WE'RE USED TO AND
THE REASON THAT I THINK THE
THOUGHT EXPERIMENT DOESN'T QUITE
WORK DAVE IS THAT IN REALITY,
ICU MORTALITY RATES ARE 15-20%
AND IN REALITY, NURSES ARE
ESSENTIALLY WILL NEVER BE ASKED
TO COME TOA DO A JOB THAT ALMOST
ALWAYS INVOLVES THE PATIENT, SO
THAT'S NOT--DOESN'T QUITE ANSWER
THE DILEMMA, THE REASON THE
DILEMMA IS IMPOSSIBLE TO SORT
OUT BUT THAT THOUGHT EXPERIMENT
DOESN'T REALLY REFLECT THE
REALITIES OF WHAT NURSES WILL
GENERALLY BE ASKED TO DO.
>> THANK YOU.
SO THIS IS A SPRINGING OF
QUESTION THAT I HADN'T PREPARED
YOU FOR, SO I APOLOGIZE IF YOU
DON'T HAVE THOUGHTS ON THIS BUT
A NUMBER OF PEOPLE HAVE BEEN
E-MAILS ME AND ASKING WHETHER
THE RESEARCH SETTING, SO--CENTER
CONSIDERED OR PARTICIPATING IN A
CLINICAL TRIAL?
DO YOU THINK THAT INFLUENCES OR
SHOULD INFLUENCE THESE ISSUES 1
WAY OR ANOTHER?
>> WELL I GUESS, IT COULD BE
THAT YOU COULD HANDLE THAT
THROUGH THE STANDPOINT OF
KNOWLEDGE GENERATION OR FROM THE
STANDPOINT AS THE CLINICAL
CENTER BEING THE PLACE OF LAST
RESORT AND THEREFORE MAYBE
THERE'S MORE OF AN OBLIGATION TO
KEEP GOING LONGER.
YOU KNOW I--I THINK THIS IS WHY
BRODY'S FORMULATION IS SO
HELPFUL IN THE SENSE THAT HIS
CLAIM IS THAT WE DON'T WANT TO
GROUND THIS IN THE CULTURE OF 1
HOSPITAL OR 1 ICU AND INSTEAD,
WE'RE TRYING TO ASSURE OURSELVES
THAT ALL INSTITUTIONS ARE
SAYING, LISTEN THIS IS NOT THE
KIND OF CARE THAT WE WOULD
PROVIDE, IT'S GROSSLY
DISPROPORTIONATE AND THAT'S
WHERE THAT LOOKING AROUND FOR
OTHER HOSPITALS BECOME SO
IMPORTANT BECAUSE AS YOU DO
THAT, AS YOU ASK THAT QUESTION
OF OTHER HADN'TS IF THE ANSWER
IS NO AND NO, AND NO, AND NO,
AND NO, YOU BEGIN TO GET IT A
PLACE WHERE YOU'RE GETTING A
HIGHER DEGREE OF CERTAINTY THAT
WHAT'S REQUESTED IS OUTSIDE THE
BOUNDARIES OF ACCEPTED PRACTICE.
NOW WHETHER OR NOT THE NIH OR A
PLACE LIKE PITT, ACADEMIC
CENTERS THAT PRIDE THEMSELVES ON
INNOVATION MIGHT BE WILLING TO
GO FARTHER, I THINK THAT WOULD
BE PERMISSIBLE, TO SAY, LISTEN,
WE GET THAT THIS IS HARD ON
PEOPLE, BUT WE--IT'S PART OF OUR
MISSION TO REALLY PUSH SCIENCE
AND WE'RE THEREFORE WILLING TO
DO IT AND I THINK IF THAT'S THE
CASE, EVERYONE NEEDS TO BE
ONBOARD WITH THAT BECAUSE THAT
CAN BE A VERY DISTRESSING
APPROACH.
>> SOME OF YOUR SLIDES BROADEN
THE ISSUE OF SURGASY AND I WAS
WONDERING IF YOU COULD DISCUSS
THAT FOR A MOMENT.
SOME PEOPLE ARE ASKING HOW THE
CASE WHERE IT'S NOT THE
PATIENT--SO IN THIS CASE, IT
VARIED, SOMETIMES YOU COULD
COMMUNICATE, AT SOME POINTS YOU
COULD COMMUNICATE WITH THE
PATIENTS, OTHER TIMES YOU
COULDN'T.
THERE'S THE GRANDMOTHER THERE,
BUT SO, WHAT ABOUT WHEN WE WERE
TALKING TO THE SURROGATE RATHER
THAN THE PATIENT?
AND I DON'T KNOW YOUR EXPERIENCE
BUT MY EXPERIENCE IS THAT THE
WILLING TO GIVE JUST EVEN AN
EXTRAORDINARY LOW CHANCE, GIVE
IT A SHOT, ALMOST SEEMS TO ME TO
INCREASE THE SURROGATES WHO ARE
JUST EVEN LESS WILLING OR MORE
RELUCTANT TO FEEL LIKE WHAT THEY
MIGHT SEE AS GIVING UP ON THEIR
LOVED 1 AND HOW WE CAN HELP THEM
MAKE THOSE DECISIONS.
>> YEAH, WE ACTUALLY STUDIED
THIS SOME YEARS AGO, WE DID
A--WE ENROLLED SURROGATES AND WE
ASKED THEM AT WHAT POINT WOULD
YOU SAY IT'S JUST TOO MUCH FOR
YOUR LOVED 1 TO KEEP GOING AND
WE ACTUALLY GAVE THEM THE OPTION
OF, YOU KNOW WE WE WALKED DOWN
THE PROBABILITY SCALE AND
INCLUDING 0 AND 25% OF
SURROGATES SAID EVEN IF THE
CHANCE IS 0, EVEN THE DOCTOR
SAYS THE CHANCE IS 0, I WOULD
KEEP GOING AND I DO THINK THAT
REFLECTS THE PSYCHOLOGICAL
DIFFICULTY OF DECIDING FOR
OTHERS, PARTICULARLY WHEN THE
DECISION IS SO TIGHTLY LINKED TO
THE PATIENT DYING.
AGAIN, WE DON'T KNOW HOW TO
OVERCOME THAT FULLY.
BUT WHEY WOULD POINT TO IS THE
IMPORTANCE OF ATTENDING TO THAT
PSYCHOLOGICAL DISTRESS IN
LONGITUDINAL WAYS AND THIS IS
REALLY WHAT PALLIATIVE CARE
CLINICIANS DO WELL IS BY MEETING
FAMILIES WHERE THEY ARE AND
HELPING THEM OVERTIME MOVE
THROUGH THE STAGES OF GRIEF TO
COME TO AN ACCEPTANCE OF WHERE
THE PATIENT IS, DOESN'T ALWAYS
WORK BUT IT'S A FAR BETTER
STRATEGY THAN SIMPLY SORT OF
TREATING THIS AS--TREATING THIS
AS IF THEY'RE RATIONAL ACTORS
AND THIS IS JUST AN ANALYTIC
QUESTION THEY'RE TRYING TO
ANSWER.
>> GREAT.
SO 1 LAST QUESTION, AND --I
DON'T KNOW IF DAN HAS THOUGHTS
ON THIS OR JUST YOUR EXPERIENCE
AS AN INTENSIVIST, MY EXPERIENCE
HAS BEEN TALKING TO INTENSIVISTS
WHEN YOU THINK ABOUT WHAT'S
APPROPRIATE CARE AND WHEN THE
RISK BENEFIT RATIO IS JUST SO
OUT OF WHACK THAT IT'S NOT
APPROPRIATE TO CONTINUE, AT
LEAST THE INTENSIVISTS I'VE
INTERACTED WITH IS ONLY AT THE
NIH SO IT'S A SPECIALIZED GROUP
BUT MY EXPERIENCE HAS BEEN IF
YOU LINE THEM ALL UP, THEIR
OPINIONS ON THAT WILL JUST VARY,
PRETTY WIDELY, SO WE--WE HAVE
ETHICS COMMITTEE DISCUSSIONS
WHERE WE HAVE GIVE THE PATIENT
WHO'S REALLY, REALLY SICK WIDE
SPREAD BONY METASTATIC CANCER
AND YOU ASK, WELL, WHAT ABOUT A
DNR, SHOULD WE MAKE THIS PERSON
DNERROR SO SHOULD WE BE WILLING
TO DO RESUSCITATION IF THEY NEED
IT AND SOME INTENSISTIVES WILL
SAY ABSOLUTELY NOT, ALL I'M
GOING TO DO IS SCRAPE THEIR
BONES AND HURT THEM MORE AND THE
CHANCES OF SOMEONE GETTING OUT
OF THE HOSPITAL ARE EXTREMELY
LOW.
OTHERS SAY IF THEY'RE INFORMED,
AND THEY WANT US TO TRY, MY JOB
IS TO TRY.
>> OVER THE COURSE THAT THIS
INDIVIDUAL WAS IN THE ICU, THEY
WERE CARED FOR BY MEMBERS OF
MOST IF NOT ALL OF OUR
DEPARTMENT, MANY OF WHOM I THINK
ARE TUNED IN TO TODAY'S
DISCUSSION AND SO, YES, THERE IS
NOT ALWAYS, YOU KNOW UNIFORMITY
IN THE WAY THAT 1 CLINICIAN
VIEWS THESE RELATIVE TO THE
OTHER AND I KNOW DOUG PROBABLY
REFLECTS HIS EXPERIENCES AS
WELL.
THE QUESTION IS HOW DO YOU
MANAGE THAT, HOW DO YOU MITIGATE
THAT AND I THINK PERHAPS AGAIN,
WHO YOU ASK MAY DIFFER.
A LOT OF WHAT DOUG STATED
RESONATES WITH ME AND IS
CONSISTENT WITH THE PRACTICE
THAT I TRY TO ACCOMPLISH IN THE
ICU WHICH IS TO HAVE, YOU KNOW,
ITERATIVE AND INTERDISCIPLINARY
CONVERSATIONS ABOUT THESE THINGS
TO TRY TO IDENTIFY WHERE THERE
ARE DIFFERENCES OR
MISUNDERSTANDINGS OR ALTERED
PERSPECTIVES, AND THEN, YOU KNOW
THROUGH THAT PROCESS OF THESE
ITERATIVE CONVERSATIONS AND
DISCUSSIONS, AND IMPORTANTLY,
FIRST AMONG THE PROVIDERS, AND
THE FULL TEAM OF PROVIDERS,
RIGHT?
LIKE WE'RE A TEAM, NURSES,
THERAPISTS, CLINICIANS,
PHYSICIANS, DO WAWE CAN TO GET
ON THE SAME PAGE WITH EACH
OTHER, TO GET ON THE SAME PAGE
RCHT IMPORTANTLY FOR US AND ALEX
IS AWARE OF THIS, THE ICU TEAM
AND THE PROTOCOL TEAM, THE TEAM
THAT BROUGHT THAT PERSON THERE
FOR THEIR PROTOCOL, ITERATIVE
PROCESS TO WORK OUT OUR STUFF TO
SAY ARE WE ON THE SAME PAGE AND
THEN AS A GROUP GO TO THE FAMILY
ORLET
ORLET SUR--OR THE PATIENT AND
HAVE A UNIFIED VOICE AND REFLECT
THAT OVER TIME SO THAT SOMEWHERE
IN THAT PROCESS, YOU GET TO A
REASONABLE APPROACH.
YOU KNOW SO THAT'S THE BEST I
CAN GIVE YOU THERE.
>> THANKS.
>> THAT'S WHAT WE DO.
>> YEAH, THAT'S REALLY HELPFUL.
SO WE'RE OUT OF TIME, DOUG ANY
LAST THOUGHTS?
>> I THINK IT WOULD BE GOOD TO
HEAR WHAT HAPPENED WITH THE CASE
AND HOW IT PLAYED OUT.
MANY OF US LIKE TO HEAR THE END
OF THESE STORIES.
>> [LAUGHTER]
SO LET ME, I DON'T KNOW IF ALEX
WANTS TO--LET ME SAY BEFORE WE
GIVE THAT QUICKLY THAT I WANT TO
THANK DOUG, I WANT TO THANK DAN
AND ALEX, BEING WE CAN'T DO
THESE WITHOUT THE CLINICIANS
BEING WILLING TO PRESENT AND
SORT OF AIR THEIR DIFFICULT
CASES IN FRONT OF ALL THE REST
OF US AND SO WE REALLY
APPRECIATE EVERYBODY'S
INVOLVEMENT, SO THANKS TO
EVERYBODY.
I WILL TRY TO RESPOND TO
QUESTIONS I HAVEN'T, I DON'T
KNOW IF HAD A QUICK WRAP UP
THERE ALEX.
>> NO, BUT I THINK DAN, DID YOU
HAVE--MAYBE YOU INITIALLY DID
BUT I DON'T THINK--
>> YEAH, SO THE WRAP UP AND
DOUG, I'M GLAD YOU BROUGHT IT UP
AND I WILL TRY TO BE BRIEF
BECAUSE I KNOW WE'RE A MINUTE
OVER HERE IS THAT YOU KNOW THERE
WERE CHALLENGES ABOUT
WHETHER--SO THE ANSWER IS THAT
THIS INDIVIDUAL WANTED CARE,
THEY WANTED TO BE CONTINUE TO BE
AGGRESSIVE BUT THERE WAS SOME
CONFUSION BECAUSE TOWARDS THE
END WHEN SHE WAS SUFFERING, SHE
ALSO WAS REFUSING PROCEDURES, IT
ULTIMATELY GOT TO THE POINT
WHERE IT FELT SHE REALLY WASN'T
IN A POSITION AND HAD THE
CAPACITY TO MAKE MEDICAL
DECISIONS AND ULTIMATELY THOSE
CONVERSATIONS WERE SORT OF
ITERATIVELY HAD WITH HER
SURROGATE DECISION MAKER, HER
GRANDMOTHER AND OVER TIME IT WAS
THE IMPRESSION OF THE
GRANDMOTHER THAT THIS IS NOT
WHAT THE PATIENT WOULD HAVE
WANTED FOR HERSELF.
THAT GIVEN THE LIKELIHOOD OF
BENEFIT AND THE ONGOING
SUFFERING AND DIFFICULTIES THAT
IF THE PATIENT WERE IN THE ROOM
THAT THAT'S NOT WHAT SHE WOULD
WANT AND SHE WAS TRANSITIONED TO
COMFORT CARE AND ULTIMATELY DIED
THEREAFTER.
>> ALL RIGHT.
>> AND WE STILL DON'T KNOW WHAT
HER DISEASE WAS.
YEAH.
>> ALL RIGHT, SO THANK YOU,
THANKS YOU GUYS VERY MUCH, THIS
WAS A GREAT SESSION AND FOR
PEOPLE AROUND, HOPEFULLY SEE YOU
THE FIRST WEDNESDAY IN APRIL FOR
THE LAST 1 OF THE SPRING.
OKAY, THANKS YOU GUYS AND
BYE-BYE EVERYBODY.
>> BYE, THANK YOU.