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I AM A MEMBER OF THE SENIOR COUNCIL HERE IN HASTINGS.
I WORK IN GERIATRIC MEDICINE, WHICH MEANS THE CARE OF OLDER PEOPLE.
AND I JUST HAPPENED TO SEE BACK IN ABOUT SEPTEMBER OR OCTOBER THAT MY FRIEND AND COLLEAGUE, DR.
CYNTHIA PAN, WHERE IS SHE? THERE SHE IS.
UM, WAS WAS COMING OUT WITH A BOOK.
UM, SO I ORDERED IT AND I THOUGHT IT WAS TERRIFIC, AND I THOUGHT IT WAS SOMETHING THAT WOULD BE GREAT TO SHARE WITH OUR COMMUNITY, HER WISDOM IN THIS AREA.
SO I FLOATED THE IDEA TO THE SENIOR COUNCIL AND THEY WERE VERY ENTHUSIASTIC, AND THAT'S HOW THIS EVENT, UM, UNFOLDED OVER SEVERAL MONTHS.
SO BEFORE WE PROCEED, AND I INTRODUCE CYNTHIA, I JUST WANTED TO, UM, ACKNOWLEDGE A FEW PEOPLE.
FIRST OF ALL, THE GREAT STAFF OF THE COMMUNITY CENTER, UM, WHO ARE ALWAYS SO HELPFUL IN GETTING THINGS OFF THE GROUND, AND PARTICULARLY ANN RUSIC
UM, AND I ALSO WANTED TO ACKNOWLEDGE THE, UM, OTHER MEMBERS OF THE SENIOR COUNCIL THAT WERE ON THE PLANNING COMMITTEE FOR THIS EVENT.
SO WE'VE GOT, I DON'T KNOW WHERE YOU ALL ARE, BUT, UM, THERE'S POLLY UR, WHO'S THE HEAD OF THE SENIOR COUNCIL, AND, UM, BARBARA DORMANT, PAM NELL AND KATE WASHINGTON.
SO, UM, THEY'VE BEEN SO HELPFUL.
WE HAVE SARAH DAVIDSON AT THE BACK OF THE ROOM WHO'S HERE FROM PICTURE BOOKS AT THE HUD CO SPACE IN, UM, DOBBS FERRY, WHO WILL BE SELLING CYNTHIA'S BOOK AT THE END OF THE EVENT, IF YOU'D LIKE.
AND CYNTHIA WILL INSCRIBE IT FOR YOU IF YOU'D LIKE.
SO WITHOUT FURTHER ADO, I'D LIKE TO INTRODUCE CYNTHIA, MY FRIEND.
AS I SAID, UM, CYNTHIA AND I WORKED TOGETHER AT MOUNT SINAI, UM, SOME YEARS AGO IN THE DEPARTMENT OF GERIATRICS AND PALLIATIVE MEDICINE.
UM, CYNTHIA'S OFFICE WAS JUST A FEW STEPS AWAY FROM MINE ACROSS THE RECEPTION SPACE, SO WE WOULD GET TO CHAT A LOT, AND I, NOT INFREQUENTLY, UM, WOULD GIVE HER A RIDE HOME.
UH, SHE WAS LIVING IN RIVERDALE AT THE TIME WITH HER HUSBAND AND TWO LITTLE KIDS.
AND ON THOSE RIDES HOME, WE WOULD JUST GET ENGAGED IN ALL THESE CONVERSATIONS.
SHE'S, YOU'LL SEE SUCH AN ENGAGING AND INTERESTING PERSON THAT I WAS SO INVOLVED IN THE CONVERSATION ONE DAY THAT A POLICE MAN PULLED ME OVER
AND OF COURSE I WAS LIKE, OH, SORRY, SORRY, SORRY, OFFICER, YOU KNOW, WE'RE TOO DOCTORS.
AND, UM, HE SAID, WELL, LET ME SEE YOUR ID.
AND SO I GAVE IT TO HIM AND HE SAID, OKAY, DOC, I'LL LET YOU OFF THIS TIME, BUT IN GENERAL, IT'S NOT TOO SMART TO BE DRIVING FASTER THAN THE COP CAR IN THE NEXT LANE
SO I SAID, THANK YOU, OFFICER
BUT, SO THEN CYNTHIA LEFT MOUNT SINAI ON 2006, I THINK.
UM, HER, HER SPECIALTY IS PALLIATIVE CARE, PALLIATIVE MEDICINE, AND YOU'RE GONNA BE LEARNING A LOT ABOUT THAT.
UM, SHE LEFT TO WORK WITH A PALLIATIVE CARE NETWORK IN QUEENS WHERE SHE DID HUNDREDS OF HOME VISITS, I THINK, ON PALLIATIVE CARE PATIENTS.
AND ALL OF THAT EXPERIENCE INFORMS WHAT IS FOUND IN HER ENTIRELY ENGAGING AND PERSONAL FUNNY, UM, BOOK.
UH, IN 2010, SHE WAS RECRUITED TO SET UP THE, UM, PALLIATIVE CARE PROGRAM AT, UM, NEW YORK PRESBYTERIAN QUEENS HOSPITAL.
SO SHE'S NOT ONLY THE DIRECTOR OF THE PALLIATIVE CARE PROGRAM THERE, THE PALLIATIVE MEDICINE DEPARTMENT, THAT'S HER FIRST FULL-TIME JOB.
UM, HER SECOND FULL-TIME JOB IS THAT SHE'S THE DIRECTOR OF GRADUATE MEDICAL EDUCATION, WHICH IS THE TRAINING OF ALL RESIDENTS AND FELLOWS AND TRAINEES AT THE HOSPITAL.
SO, WITHOUT FURTHER ADO, I'D LIKE TO HAVE CYNTHIA COME UP AND SHARE HER WISDOM WITH YOU.
I THINK HE'LL REALLY BENEFIT A LOT FROM IT.
I REALLY APPRECIATE THAT INTRODUCTION.
IT REALLY BRINGS BACK, UH, GREAT MEMORIES FROM OUR RIDE.
AND I ALSO WANNA SAY THAT, UM, ONE OF MY FOND MEMORIES WITH PAT IS ROUNDING IN THE HOSPITAL AT MOUNT SINAI.
AND THERE WAS A PATIENT WHO WAS VERY RELIGIOUS AND VERY, UH, FAITHFUL, UH, AND WAS STRUGGLING WITH A SERIOUS ILLNESS.
AND AT THE END OF THE VISIT, UM, PAT KIND OF SAID, WILL YOU PRAY FOR, YOU KNOW, YOUR, YOUR SITUATION, BUT ALSO FOR US AS HEALTHCARE, UH, PEOPLE, DOCTORS AND NURSES.
AND THE PATIENT WAS SO HAPPY ABOUT THAT BECAUSE SHE REALLY WANNA DO SOMETHING FOR US.
BUT, YOU KNOW, SHE'S IN THE HOSPITAL SICK AND, UH, HAVING NO CONTROL OVER HER SITUATION.
SO FOR HER TO BE ABLE TO, UH, OFFER PRAYERS FOR US
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AS HEALTHCARE WORKERS, THAT MEANT A GREAT DEAL TO US.AND WHEN PAT SAID THAT, I WAS LIKE, OH, IS THAT GONNA GO WELL? BUT THEN SHE, THE PATIENT REALLY LOVED IT.
SO I'VE BEEN LEARNING ABOUT THAT AND USING THAT SINCE THEN.
SO I WANNA SAY THANK YOU FOR MENTIONING THAT.
UM, OKAY, SO WE START, PUT THIS HERE.
CAN YOU HEAR WHAT ABOUT THIS ONE? THE VOLUME? WHAT ABOUT THIS? IS THIS OKAY? AH, OKAY.
UM, SO THE TALK TODAY IS GONNA BE CALLED EXIT STRATEGIES, THE POWER OF HUMOR AND OPENNESS IN END OF LIFE DISCUSSIONS.
IS THIS ONE BETTER? I USE THIS ONE.
SO EXIT STRATEGIES IS ALSO THE NAME OF MY BOOK.
AND THE REASON WHY I NAMED THE DAD IS BECAUSE, UH, ONE OF MY PATIENTS TOLD ME, DOC, ONE OF THESE DAYS, WE'RE ALL GONNA LEAVE THIS WORLD, SO IT'S OKAY.
SO EVEN THOUGH WE ARE ALL GONNA LEAVE THIS WORLD ONE DAY, NOBODY SEEMS TO HAVE A STRATEGY.
A LOT OF PEOPLE REALLY DON'T WANNA TALK ABOUT IT.
UH, AND I HAD COME ACROSS A BOOK, UH, THAT WAS A CARTOON BOOK THAT WAS, UM, WRITTEN BY ROSS CHA, AND SHE'S A CARTOONIST ILLUSTRATOR FOR THE NEW YORK TIMES.
SHE TRIED TO HAVE THESE DISCUSSIONS WITH HER PARENTS AND ENDED UP WRITING A CARTOON BOOK ABOUT IT.
AND THE TITLE OF THAT WAS, CAN'T WE TALK ABOUT SOMETHING MORE PLEASANT? UH, SO I DON'T THINK SHE GOT VERY FAR.
SO I ALSO WANNA THANK ALL, YOU KNOW, EVERYONE FROM THE HASTINGS AND HUDSON SENIOR COUNCIL, UH, FOR HELPING ME ORGANIZE THIS AND PICTURE BOOKS.
AND MY DISCLOSURES ARE THAT I HAD TO CREATE A COMPANY, UH, FOR MYSELF CALLED RICE WATER PUBLISHING, BECAUSE I SELF-PUBLISH MY BOOK.
I'VE SPENT A LOT MORE MONEY THAN I MADE MONEY.
UM, AND I ALSO WANNA ACKNOWLEDGE THAT THIS IS A VERY BRAVE, SMART, AND SUPPORTIVE COMMUNITY THAT WE CAN REALLY TALK ABOUT, UH, DIFFICULT OR TABOO TOPICS, UH, LIKE THIS.
AND I REALLY WROTE MY BOOK WITH A HOPE TO GIVE SPACE FOR PEOPLE TO TALK ABOUT HARD TOPICS THAT ARE PART OF LIFE.
OTHER TABOO TOPICS INCLUDE SEX AS WELL AS MENTAL HEALTH.
YOU KNOW, THERE ARE A LOT OF TABOO TOPICS, BUT I FEEL LIKE END OF LIFE IS PART OF THE LIFE CYCLE.
EVERYBODY KIND OF KNOWS THAT, BUT NOBODY REALLY WANTS TO GO THERE UNTIL YOU GET THRUST INTO IT, AND THEN YOU HAVE NO CONTROL.
AND THEN, YOU KNOW, IT BECOMES A CRISIS.
SO I WANNA TALK ABOUT THIS TOPIC AND ALSO HAVE SOME FUN.
AND, UH, WE MIGHT TALK AND THEN SOME INTERACTIVE STUFF.
UH, SO WE'RE GONNA FOCUSING A LOT ON ADVANCED CARE PLANNING SO THAT WE CAN BE PREPARED.
UM, HOW MANY PEOPLE HERE HAVE THOUGHT ABOUT ADVANCED CARE PLANNING? GREAT.
THERE'S VERY KNOWLEDGEABLE GROUP.
UM, HOW MANY PEOPLE BELIEVE THAT IT'S IMPORTANT? OKAY, GREAT.
HOW MANY PEOPLE ACTUALLY HAVE A DOCUMENT FOR ADVANCE CARE PLANNING? WOW.
SO THIS IS A VERY KNOWLEDGEABLE GROUP.
UM, I WAS GONNA ASK, UH, SHARE EXPERIENCES.
HOW MANY PEOPLE HAVE HAD GOOD EXPERIENCES WITH ADVANCED CARE PLANNING? NOT AS MANY.
HOW MANY PEOPLE HAVE HAD BAD OR NEGATIVE EXPERIENCE WITH ADVANCED CARE PLANNING? OKAY, INTERESTING.
SO I WANNA START BY SHARING A LITTLE BIT ABOUT MY OWN BACKGROUND.
I KIND OF CONSIDER MYSELF TO BE A CHILD OF THE WORLD.
I WENT UP TO THIRD GRADE THERE, AND THEN MY FATHER WAS A DIPLOMAT.
AND THEN WE STARTED TRAVELING THROUGHOUT SOUTH AMERICA.
SO I KINDA, IN MY FORMATIVE YEARS, I GREW UP IN LIKE PANAMA, COLOMBIA, MEXICO, PARAGUAY, WE'RE IN THE CAPITAL CITIES.
AND THEN AROUND SEVENTH GRADE, UH, WE MOVED TO THE UNITED STATES.
WE ENDED UP IN BROOKLYN BECAUSE MY DAD HAD A FRIEND IN BROOKLYN.
BUT THEN THROUGHOUT THE YEARS, YOU KNOW, BROOKLYN, FORGET ABOUT IT, RIGHT? IT IS REALLY GOOD.
UM, I'VE HAD THE OPPORTUNITY TO WORK OR LIVE OR VISIT EXTENSIVELY IN ALL OF THE FIVE BOROUGHS.
AND ONE OF MY GOALS IS TO VISIT ALL 50 STATES OF THE US AND I MADE IT TO 41 SO FAR.
SO IT'S VERY POSSIBLE NOW, BUT ALL OF THE ONES THAT ARE LEFT OVER OUR STATES THAT YOU'VE NEVER REALLY WANNA GO TO.
AND, UM, ALSO, I VISITED, UH, MANY CITIES IN CHINA, INCLUDING BEIJING.
UH, 'CAUSE MY FATHER EVENTUALLY, UH, SETTLED THERE.
SO HE WOULD LIVE HALF THE YEAR OVER THERE AND HALF THE YEAR HERE.
AND IT WAS REALLY GREAT BECAUSE I HAVE TWO KIDS, UH, BOTH BOYS, AND I REALLY WANTED THEM TO LEARN CHINESE.
BUT GROWING UP IN AMERICA, TRYING TO TELL THEM TO LEARN CHINESE WAS NOT EASY.
I SENT THEM TO CHINESE SCHOOL.
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THE CHINESE CHARACTERS RECOGNIZE THEM MORE THAN THEY RECOGNIZE THE CHARACTERS.UM, BUT THEN AT SOME POINT I STARTED TAKING THEM BACK EVERY TWO YEARS TO CHINA.
AND ONCE THEY WERE IN CHINA, IT WAS SUCH AN IMMERSIVE EXPERIENCE THAT THEY WERE LIKE, HOLY COW, YOU KNOW, WE GOTTA LEARN TO SPEAK CHINESE, OTHERWISE WE CAN'T, LIKE, YOU KNOW, GET AROUND HERE.
SO THAT'S WHAT REALLY WORKED FOR THEM.
SO NOW BOTH OF THEM CAN'T SPEAK CHINESE, AT LEAST FOR SURVIVAL.
UM, SO GROWING UP, MY, UH, BECAUSE WE MOVED AROUND SO MUCH, WE, UH, WERE A VERY TIGHT-KNIT FAMILY.
I DIDN'T HAVE A LOT OF CHILDHOOD FRIENDS BECAUSE WE MOVED AROUND SO MUCH, IT FELT LIKE ALL OVER SOUTH AMERICA.
I WOULD GET INTO SCHOOL IN THE MIDDLE OF THE SCHOOL YEAR, NOT EVEN AT THE BEGINNING.
I WOULD TAKE ALL MY NOTES AND COPY ALL MY NOTES, AND THEN WE WOULD LIKE MOVE TO THE NEXT COUNTRY.
UM, SO MY FAMILY WAS VERY TIGHT KNIT.
UH, AND MY PARENTS, MY DAD ESPECIALLY, WAS A LITTLE PROTECTIVE.
AND IN HIGH SCHOOL, I WASN'T REALLY ALLOWED TO GO OUT OR TO SOCIALIZE.
AND HE TRAINED MY BROTHER PETER.
UH, HE HAS DEVELOPMENTAL DISABILITIES AND HE CAN'T READ OR WRITE, BUT HE HAS A GREAT MEMORY AND HE FOLLOWS ALL OF MY FATHER'S ORDERS.
SO MY DAD TRAINED HIM TO LISTEN IN ON MY HIGH SCHOOL CONVERSATIONS.
AND IF IT WAS A GUY AND WE WEREN'T TALKING ABOUT HOMEWORK ANYMORE, HE WOULD SAY, OKAY, SIS, IT'S TIME TO CUT IT OFF.
SO I WASN'T ABLE TO DATE OR ANYTHING.
AND, UM, I HAD A LOT OF TIME TO STUDY.
SO BETWEEN MY BACKGROUND AND A LOT OF TIME FOR STUDYING, I GOT INTO HARVARD, UH, WHICH WAS A RUDE AWAKENING BECAUSE MY FORMATIVE, MY FRESHMAN WEEK WAS REALLY FORMATIVE.
I GOT THERE, I HAD NEVER REALLY LIVED AWAY FROM HOME, NO CAMP, NO NOTHING.
THIS IS MY FRESHMAN DORM, STRS.
I WAS CHECKING OUT ALL THE ACTIVITIES.
EVENTUALLY I WORKED FOR THE HARVARD CRIMSON AS A PHOTOGRAPHER, BUT DURING THAT WEEK I WAS LIVING ON THE SECOND FLOOR.
AND THEN SOME GUYS FROM THE FIRST FLOOR CAME AND KNOCKED ON MY DOOR AND SAY, HEY, YOU KNOW, WE'RE FROM DOWNSTAIRS.
WOULD YOU LIKE TO DONATE SOME MONEY? I WAS LIKE, WOW, HARVARD GUYS ARE ORGANIZING A CAKE PARTY.
SO I DONATED MY $5 AND FULLY EXPECTING THIS.
AND THEN THE NIGHT CAME AND I FOUND OUT THAT I, I DIDN'T KNOW WHAT A KEG WAS UNTIL FRESHMAN WEEK AT HARVARD.
I WAS LIKE, WHERE'S THE CAKE? AND THEY'RE LIKE, OH, OVER THERE.
UH, I NEVER SAW ANY, LIKE SO MANY DRUNKEN YOUNG PEOPLE LIKE ON THE FLOOR, YOU KNOW? AND SOME WERE LIKE TALKING TO THEIR GRANDMA.
APPARENTLY THAT'S WHAT THEY DO, YOU KNOW, IN BOARDING SCHOOL, I WAS LIKE, OH MY GOD, WHAT'S, WHAT'S GOING ON HERE? BUT THAT'S WHERE I LEARNED THE DIFFERENCE.
AND I TALKED ABOUT THAT IN MY BOOK.
I WAS LIKE, WHAT'S GOING ON? UM, AND I NEVER STARTED DRINKING UNTIL IN COLLEGE.
SO THAT WAS A GOOD HARVARD EDUCATION.
UM, AND THEN THE OTHER THING THAT STARTED HAPPENING WAS IN HIGH SCHOOL, MY MOM AND DAD WOULD COME AND TALK TO ME AND SAY, HEY, YOU HAVE TO START THINKING ABOUT WHAT YOU WANNA DO WHEN YOU GROW UP.
WHAT'S THAT? AND MY DAD WOULD GO, WHOA, DO YOU WANNA BE A DOCTOR OR A LAWYER? AND THE CONVERSATION KIND OF DROPPED OFF THERE.
SO I NEVER GOT THE IMPRESSION THAT IT WAS SOMETHING ELSE.
SO I WAS LIKE, OKAY, I DON'T WANNA BE A LAWYER, SO I GUESS I BETTER BE A DOCTOR.
UM, AND A LOT OF MY FRIENDS, EVENTUALLY I FOUND OUT WHO WERE ASIAN, GOT PRESSED INTO THOSE PATHWAYS.
AND LUCKILY I DO LIKE BEING A DOCTOR.
UM, UNLIKE SOME OF MY FRIENDS WHO WERE FORCED TO BE A DOCTOR AND THEN DROPPED OUT, THEY GOT THEIR DOCTORATE, THEIR MD DEGREE, SHOWED THEIR PARENTS AND SAID, HERE, YOU GOT WHAT YOU WANTED.
NOW I'M GOING TO DO SOMETHING ELSE.
UM, BUT SO I WENT INTO HARVARD BEING PRE-MED, BUT WITHIN AN OPEN MIND.
AND THEN I WENT TO A CAREER COUNSELING SUR, UM, TALK AT HARVARD.
AND THE TITLE WAS DOCTOR, LAWYER, OR INDIAN CHIEF.
UH, SO THERE WAS ONE MORE OPTION, BUT I DECIDED I'M DOCTOR.
UM, SO BEING A DOCTOR, I SEE A LOT OF THINGS THAT I DIDN'T REALLY EXPECT TO SEE.
I FEEL LIKE IT'S A PRIVILEGE AND A BURDEN SOMETIMES.
YOU KNOW, THERE'S A LOT OF CHRONIC CONDITIONS THAT WE END UP SEEING.
AND AS WE ALL LIVE, UH, LONGER ACROSS THE WORLD AND THE US LIKE EVERYWHERE ACROSS THE WORLD, EXCEPT FOR VERY, UH, UNDERDEVELOPED COUNTRIES, UM, PEOPLE ARE LIVING LONGER, LONGEVITY.
UM, AND THEN AS WE LIVE LONGER, WE ALSO ACCUMULATE MEDICAL CONDITIONS.
SO BY THE TIME PEOPLE ARE COMING INTO THE HOSPITALS, LET'S SAY WITH A PNEUMONIA, WE'RE NOT DEALING WITH PNEUMONIA AND HIGH BLOOD PRESSURE, WE'RE DEALING WITH PNEUMONIA AND FIVE OR SIX OTHER CONDITIONS THAT YOU CAN SEE HERE.
AND SOMETIMES PEOPLE CAN GET PRETTY SICK, AND THEN THINGS GET VERY EMOTIONAL IF SOMEBODY REALLY HAS A CRITICAL ILLNESS OR, YOU KNOW, EVEN AT THE END OF LIFE WE SEE A LOT OF EMOTIONS.
AND WHAT I REALIZED WAS THAT MEDICAL SCHOOL DID NOT PREPARE DOCTORS FOR EMOTIONS.
YOU KNOW, DOCTORS SEE EMOTIONS, THEY RUN THE OTHER WAY.
UH, SOCIAL WORKERS MUCH, MUCH BETTER LEARN FROM OUR SOCIAL WORKER.
CHAPLAINS REALLY, REALLY GREAT.
BUT I FEEL LIKE WE ALL HAVE TO LIKE CROSS LEARN.
AND THERE ARE A LOT OF EMOTIONS.
YOU KNOW, PEOPLE LIKE GET UP AND WALK OUT OF FAMILY MEETINGS.
PEOPLE GET ANGRY AND LASH OUT, START BLAMING PEOPLE, UH, SOMETIMES THINK THEY'RE VERY SAD AND PEOPLE START CRYING OR SOBBING.
SOME PEOPLE GET VERY FEARFUL OR WORRIED.
SOME PEOPLE STAY VERY CALM AND THEY'RE ABLE TO CARRY ON CONVERSATIONS.
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BECOME VERY GRATEFUL.SOME ARE THE STRONG ONES OF THE FAMILY, BUT REALLY LIKE ALL PARTS OF THESE EMOTIONAL WILL, AND NOT ONLY PATIENTS AND FAMILIES, BUT ALSO US, OUR CLINICAL TEAMS. AND SOME PEOPLE ARE BETTER EQUIPPED TO HANDLE THOSE THAN OTHERS.
AND, UM, THAT'S WHAT GOT ME REALLY INTO A LOT OF MEDICAL EDUCATION TOO.
UH, WHEN I FIRST WENT TO NYP QUEENS TO START THE PALLIATIVE CARE SERVICE, THE RESIDENT WOULD CALL ME, ESPECIALLY ONE, I REMEMBER HIM VERY WELL, JOE.
CAN YOU COME UPSTAIRS? SO I'D GO UPSTAIRS AND LITERALLY HE WOULD BE LIKE, RUNNING AWAY.
HE'S LIKE, THEY'RE OVER THERE, THEY'RE OVER THERE.
I'M LIKE, WHERE ARE YOU GOING? HE GOES, I GOTTA DO A DISCHARGE.
I'M LIKE, YOU'RE NOT COMING WITH ME.
BUT AT LEAST HE RECOGNIZED LIKE, WHICH PATIENTS REALLY NEEDED A PALLIATIVE CARE CONSULT.
BUT HE, HE WAS LIKE SO AFRAID.
AND THEN I ALSO REALIZED THAT SOME OF OUR CRITICAL CARE UNIT DOCTORS WOULD CALL US FOR EMOTIONAL SUPPORT OF PATIENTS AND FAMILIES, UH, BECAUSE, YOU KNOW, THEY DID ALL THE MEDICAL PART, BUT THEN THERE'S OVERWHELMING EMOTIONS THAT THEY DIDN'T REALLY KNOW HOW TO HANDLE.
SO I'M TRYING TO PROMOTE THAT WE HAVE TO, YOU KNOW, TALK ABOUT EMOTIONS MORE BOTH FOR OUR PATIENTS AND FAMILIES AS WELL AS OUR OWN SELF-CARE.
AND THEN I CAME ACROSS RECENTLY WHEN I WAS REVIEWING A PEER REVIEW, LIKE MANUSCRIPT FOR PUBLICATION.
I CAME ACROSS THE LANT COMMISSION REPORT ON THE VALUE OF DEATH.
IT WAS PUBLISHED A FEW YEARS AGO, AND IT WAS VERY INTERESTING.
IT WAS LIKE A INTERNATIONAL COMMISSION.
AND WHAT THEY SAID WAS THAT THE STORY OF DYING IN THIS CENTURY IS A VERY PARADOXICAL THAT IN SOME COUNTRIES AND SITUATIONS, MANY PEOPLE ARE OVERTREATED IN HOSPITALS, UH, WITH FAMILIES AND COMMUNITIES REALLY RELEGATED TO THE MARGINS, NOT REALLY KNOWING INFORMATION, NOT SOCIALIZED TO WHAT END OF LIFE OR DEATH AND DYING LOOKS LIKE.
UM, AND IT'S BECOME VERY MEDICALIZED.
AND THEN IN OTHER COUNTRIES AND SITUATIONS, THERE'S STILL MANY PEOPLE WHO ARE UNDERTREATED, DYING OF PREVENTABLE CONDITIONS, UH, LIKE TB OR MALARIA.
AND THEN WITHOUT ACCESS TO EVEN BASIC PAIN RELIEF, WHICH I'VE ALSO SEEN, UM, I KNOW IN CHINA, BECAUSE I GO THERE AND I DO SOME TALKS THERE, THAT IN CHINA, THE POLICY IS THAT IF YOU HAVE A TERMINAL CONDITION, OR IF YOU ARE IN A LOT OF PAIN, BUT YOU DON'T HAVE CANCER, THEN YOU DON'T HAVE ACCESS TO MORPHINE.
ONLY CANCER PATIENTS GET MORPHINE.
UM, SO EVERYBODY ELSE, GOOD LUCK.
UM, AND SO HERE IN THE STATES, WE'RE VERY LUCKY THAT WE HAVE ACCESS TO MEDICATIONS FOR SEVERE PAIN.
AND WE ALSO HAVE ACCESS TO STOPPING TREATMENTS LIKE LIFE SUPPORT AND THINGS LIKE THAT, THAT NO LONGER SERVE US IF WE FEEL THAT IT'S NOT ACCOMPLISHING OUR GOALS AND WHAT, WHAT'S MEANINGFUL IN OUR LIVES.
IN SOME COUNTRIES OF THE WORLD, THAT'S NOT AN OPTION.
IF YOU ARE ON A VENTILATOR TRACH, YOU KNOW, WITH A FEEDING TUBE AND STUFF, UH, AND YOU DON'T WANT IT ANYMORE, YOU CAN'T GET OFF OF IT BECAUSE THERE'S NO LEGAL PATHWAY FOR THAT.
SO THE LANCET COMMISSION CREATED AN INTERNATIONAL COLLABORATIVE TO REALLY DISCUSS AND REPORT ON A NEW VISION FOR DEATH AND DYING IN THIS NEW AGE.
AND THEY CAME UP WITH FIVE PRINCIPLES.
UM, THAT'S PART OF THEIR UTOPIAN VISION.
BUT THE IMPORTANT THING THAT REALLY SPOKE TO ME MOST WAS NUMBER FOUR, WHICH IS NORMALIZING CONVERSATIONS AND STORIES ABOUT EVERYDAY DEATH, DYING, AND GRIEF.
UM, AND THAT'S THE WHOLE REASON WHY I WROTE MY BOOK, BECAUSE I FELT LIKE THERE WAS NOT ENOUGH CONVERSATION, AND EVERY PATIENT, OR MANY OF THE PATIENTS THAT I SAW STILL WERE STUCK IN THAT TIME WHERE, OH, IT'S TABOO TO TALK ABOUT IT.
IN MY FAMILY, WE DON'T TALK ABOUT THAT IN MY CULTURE.
WE DON'T TALK ABOUT IT IN MY RELIGION, WE DON'T TALK ABOUT THAT.
SO BASICALLY WE DON'T TALK ABOUT IT.
AND THEN THEY END UP IN AN END OF LIFE SITUATION, AND THE FAMILIES REALLY HAVE NO IDEA WHAT THE PATIENTS WANT.
THEN THEY START, YOU KNOW, REQUESTING THINGS THAT ARE NOT TOTALLY REASONABLE, AND THEN WE END UP IN A CRISIS.
SO I REALLY WANTED TO USE THIS OPPORTUNITY TO TALK ABOUT SOME OF THE STORIES THAT I'VE SEEN IN SOME ADVANCED CARE, UH, ADVANCED DIRECTIVE STORIES.
SO IN THE LANCET REPORT, THEY ALSO TALKED ABOUT TAIWAN AS AN EXAMPLE, WHICH I FOUND VERY INTERESTING BECAUSE I WAS BORN IN TAIWAN, UM, THAT TAIWAN HAS ONE OF THE FASTEST AGING SOCIETIES IN THE WORLD.
TAIPEI CITY STARTED THIS PROGRAM TO PROMOTE OPEN DISCUSSION ON ISSUES OF AGING AND DYING.
AND I GUESS IT'S EMBEDDED IN THEIR COMPASSIONATE CITY CHARTER.
UH, AND AS A RESULT OF THIS, UH, THEY HAVE PROVIDED OPTIONS FOR STEPS THAT A CITY OR A TOWN OR A VILLAGE CAN TAKE TO NORMALIZE DEATH AND DYING CONVERSATIONS.
AND THEY HAVE INITIATIVES PARTNERING, UM, WITH SCHOOLS AND BUSINESSES AND TEMPLES.
SO I JUST THOUGHT THAT WAS VERY INTERESTING.
AND THIS, THIS IS A GOOD EXAMPLE OF, YOU KNOW, SUCH AN INITIATIVE ALSO.
AND THE OTHER THING THAT I FOUND FROM THE LANZA COMMISSION IS THEIR MEMBERS SURVEYS.
SO THEY HAVE MEMBERS FROM ALL INTERNATIONAL REPRESENTATION,
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AND THEY ASK THEM A VARIETY OF THINGS.AND, UH, DARK GREEN IS WHEN THE MEMBERS STRONGLY AGREE WITH SOMETHING.
UH, THE LIGHTER GREEN IS WHEN THEY SAY AGREE, RED IS WHEN THEY COMPLETELY DISAGREE.
SO THERE'S A LOT OF ITEMS THAT THEY ASK THEM.
BUT AGAIN, THE THINGS THAT CALLED OUT TO ME IS THE FIRST ONE IS THEIR MEMBERS VASTLY STRONGLY AGREED OR AGREED THAT MORE OPEN TALK ABOUT DEATH AND DYING, INCREASING DEATH LITERACY WILL BE VERY BENEFICIAL.
SO AGAIN, THAT'S THE REASON FOR MY BOOK AND WHY WE'RE HERE.
AND THEN THE OTHER ONE WITH THE ARROW THAT THEY VERY MUCH AGREED WITH IS THAT MANY PEOPLE IN HIGH INCOME COUNTRIES ARE DIE DYING BADLY, DIE BADLY MEDICALIZED DEATHS, WHICH IS ALSO WHAT I SEE.
SO I PERSONALLY WOULDN'T WANNA BE PART OF THAT, KNOWING WHAT I KNOW.
SO AS A GERIATRICS AND PALLIATIVE CARE SPECIALIST AND HOSPICE, I DID HOSPICE FOR FOUR YEARS, WHICH IS MAINLY HOME VISITS.
AND THAT WAS VERY, VERY, IT WAS A GREAT EXPERIENCE.
I, I RECOMMEND EVERYBODY WORK WITH HOSPICE OR VOLUNTEER FOR HOSPICE OR SOMETHING.
SO AT THE SAME TIME, I WAS ALSO, UM, LAUNCHING MY ACADEMIC CAREER.
I WAS TRYING TO PUBLISH, UM, MY HOSPITAL WAS SENDING ME TO LIKE NETWORKING EVENTS OR GALAS.
AND UM, BY NATURE, I'M VERY INTROVERTED, SO NETWORKING IS NOT NATURAL TO ME.
AND I JUST LIKE HIDE IN THE CORNER.
AND THEN WHEN I FINALLY GOT UP THE GUTS TO LIKE, GO SAY SOMETHING, I WOULD GO TO THE BAR AND GET A DRINK, CALM MYSELF DOWN, AND THEN TALK TO SOMEBODY THAT I DIDN'T KNOW.
AND THEN EVENTUALLY, YOU KNOW, THEY WOULD SAY, OH, WHAT DO YOU DO FOR WORK? AND I WOULD HAVE TO SAY, I'M A DOCTOR AND I DREAD SAYING THAT BECAUSE THEN THE NEXT QUESTION IS, OH, WHAT KIND OF DOCTOR? RIGHT? SO IF I SAID CARDIOLOGIST, AND THAT'S PRETTY EASY, YOU KNOW, EMERGENCY MEDICINE, PRETTY EASY.
BUT IF I SAID GERIATRICS AND PALLIATIVE CARE, I WOULD GET ONE OF THESE THREE REACTIONS.
UM, AND THE FIRST ONE IS VERY GOOD.
IT'S LIKE, WOW, I DON'T KNOW HOW YOU DO WHAT YOU DO.
YOU KNOW, IT MUST TAKE A LOT OF PATIENCE.
THEN THE NEXT ONE IS LIKE, ISN'T THAT DEPRESSING? LIKE, AREN'T YOU DEPRESSED? LIKE, DON'T YOU WANNA SHRIVEL UP AND DIE ALREADY? I'M LIKE, NO, NOT REALLY.
YOU KNOW, I FIND IT VERY MEANINGFUL.
OKAY, BUT IT'S STILL DEPRESSING.
AND THEN THE THIRD REACTION IS LIKE, VERY AWKWARD.
IT'S LIKE, OH, OH, THAT'S WHAT YOU DO.
AND PEOPLE START DRINKING HEAVILY
UH, SO THEN I DIDN'T KNOW WHAT TO DO WITH THAT, AND EVENTUALLY YOU JUST AWKWARDLY LIKE, TURN AROUND AND GO SOMEWHERE ELSE.
UM, BUT FINALLY I TOOK SOME TIME AND I THOUGHT OF LIKE A WAY TO USE HUMOR TO BREAK THAT UP.
SO WHEN I SAY, OH, AND START DRINKING, I WOULD SAY LIKE, ARE YOU SCARED YET? UH,
AND THEN JUST PUT SOME HUMOR INTO IT AND WOULD BE ABLE TO LIKE RESET AND START THAT CONVERSATION.
BUT IT REALLY MADE ME REALIZE THAT THIS TOPIC IS NOT COCKTAIL PARTY CONVERSATION, BUT IT REALLY SHOULD BE BECAUSE PEOPLE ARE JUST, YOU KNOW, SHYING AWAY FROM IT.
UM, AND, UH, I FEEL THE SAME WAY AS ALANZA COMMISSION THAT, UH, IT REALLY SHOULD BE AN OPEN CONVERSATION.
UM, SO SOME OF THE PALLIATIVE CARE AND HOSPICE CASES SITUATIONS REALLY CONTRIBUTED TO MY BURNOUT.
UM, STARTING FROM MOUNT SINAI, WHEN I HAD A PATIENT SITUATION WHERE I WAS A YOUNG PHYSICIAN I WAS ATTENDING AND I WAS REALLY TRYING TO PUT MYSELF IN THE PATIENT'S SHOES SO THAT I CAN SEE THEIR PERSPECTIVES.
SO I WAS IN THE MIDDLE OF THE INTENSIVE CARE UNIT AND I WAS SEEING A PATIENT WHO WAS AROUND MY AGE, ME AND MY HUSBAND'S AGE, AND HE WAS VERY SICK.
HE COULDN'T COMMUNICATE WITH US.
AND WE WERE TALKING TO HIS WIFE, AND HIS WIFE SAID, NOBODY WILL EVER UNDERSTAND OUR RELATIONSHIP AND HOW MUCH WE CARE FOR EACH OTHER.
AND WE ALWAYS STOOD UP FOR EACH OTHER, AND WE DO HAVE TWO YOUNG CHILDREN, AND WHAT ARE WE GONNA DO? AND I STARTED THINKING, OH MY GOD, WHAT IF THAT'S ME? WHAT IF THAT WAS MY HUSBAND SO SICK? WHAT WOULD I DO WITH MY KIDS? AND BEFORE I KNEW IT, I JUST LOST IT.
I STARTED LIKE SOBBING IN THE MIDDLE OF THE ICU AND THANK GOD I WAS THERE WITH ONE OF MY NURSE PRACTITIONERS.
SO SHE KIND OF TOOK MY ARM, SHE'S LIKE, OKAY, IT'S TIME TO GET OUTTA HERE NOW.
AND THE NEXT DAY I SAW THE WIFE AT THE ELEVATOR AND SHE STARTED APOLOGIZING TO ME.
I DIDN'T MEAN TO MAKE YOU CRY.
SO I REALLY LEARNED THAT IN MEDICINE WE HAVE TO HAVE SOME BOUNDARIES.
AND IF WE, UH, WHICH I ALSO DIDN'T LEARN IN MEDICAL SCHOOL, UM, AND THAT IF WE ARE GONNA BE ABLE TO CARE FOR SICK PATIENTS AND VERY EMOTIONALLY INTENSE SITUATIONS LIKE THAT, THAT MAYBE I SHOULDN'T PUT, YOU KNOW, STEP INTO BOTH SHOES OF THE PATIENT, MAYBE JUST ONE SHOE AND HAVE A LITTLE BIT OF BOUNDARY, UM, AND THEN EXPERIENCE LIKE MORAL DISTRESS AND KIND OF TRAUMA REALLY FROM REPEATEDLY SEEING PATIENTS WHO DON'T HAVE ADVANCED DIRECTIVES NOW, THEY LOST THEIR CAPACITY.
THEY CAN'T REALLY TELL US WHAT THEY WANT ANYMORE.
THE FAMILIES ARE ASKING US TO, YOU KNOW, TO WAKE THE PATIENT UP FROM THEIR COMA SO THEY CAN TELL US WHAT THEY WANT.
I WAS LIKE, NO, THAT WINDOW HAS CLOSED.
YOU KNOW, THEY'RE SO SICK NOW, THEY CAN'T REALLY PARTICIPATE.
AND THEN I WOULD CALL UP THE PRIMARY CARE DOCTORS OR THE ONCOLOGIST AND SAY, HEY, DO YOU KNOW THIS PATIENT? THEY'RE LIKE, OH YEAH, I KNOW THEM
[00:25:01]
A LONG TIME.AND I SAID, OH, GREAT, THAT'S GREAT.
YOU KNOW, TELL ME ABOUT THEIR ADVANCED DIRECTIVES BECAUSE NOW THEY'RE SICK AND THEY CAN'T TELL US, OH NO, WHY, WHY WOULD I DISCUSS ADVANCED DIRECTIVES? THEY WERE JUST FINE.
I'M LIKE, CANCER PATIENT, NOT JUST FINE.
AND, UH,
AND THEN JUST REPEATED CYCLES OF SITUATIONS LIKE THAT.
AND EVENTUALLY I BECAME A LITTLE CYNICAL, LIKE, YOU KNOW, NO MATTER WHAT I DO, IT'S JUST GONNA BE THIS WAY.
AND HOW MANY MORE PATIENTS LIKE THIS CAN I SEE? AND WHATEVER I DO IS JUST USELESS.
UM, AND THEN I WOULD SEE MISUSING OF MEDICAL RESOURCES.
WE HAVE A SITUATION LIKE THAT RIGHT NOW ACTUALLY, WHERE THE FAMILY REALLY CAN'T ACCEPT ANYTHING THAT'S HAPPENING TO THE PATIENT.
UM, AND THE CASE HAS GONE TO ETHICS COMMITTEE THREE TIMES ALREADY, AND WE DON'T REALLY KNOW WHAT TO DO.
ALSO, A LOT OF MISSED OPPORTUNITIES BECAUSE OF THE PATIENTS WHO COULD TELL ME, UH, ONCE I GOT THEIR FAMILIES COME DOWN ENOUGH TO SAY, PLEASE, LET'S LISTEN TO WHAT THIS PERSON HAS TO SAY, YOUR LOVED ONE.
A LOT OF TIMES THE PATIENT WOULD TELL US, I WANNA GO HOME.
YOU KNOW, I WANNA EAT MY OWN FOOD, SLEEP IN MY OWN BED.
AND THEN THE NEXT DAY WE WOULD BE PLANNING FOR HOME HOSPICE CARE AND THE PATIENT WOULD DIE BECAUSE IT'S TOO LATE.
BUT AT LEAST THE PATIENT TOLD US WHAT HE WANTED.
UM, AND THAT REALLY BURNED ME OUT TOO, BECAUSE I REALLY WOULD LIKE TO BE ABLE TO RESPECT THE PATIENT'S DIGNITY AND WHAT THEY WANT AND FULFILL THEIR LAST WISH.
SO THERE'S A LOT OF BURNOUT IN MEDICINE AND, UM, HEALTHCARE, AND WE'RE ALL TRYING TO FIGURE OUT FROM A HEALTHCARE STANDPOINT HOW WE CAN, YOU KNOW, MANAGE THAT BETTER.
BUT FOR MYSELF, I HAD TO START REALLY DIGGING DEEP INTO WHAT ARE MY OWN COPING SKILLS, BECAUSE I HAVE TO HELP MYSELF.
BECAUSE AT SOME POINT I WAS CONSIDERING JUST LEAVING THE FIELD, JUST, YOU KNOW, LEAVING MEDICINE ALTOGETHER BECAUSE WHATEVER I DO DIDN'T SEEM TO BE GOOD ENOUGH.
AND THAT'S WHEN I KINDA SWITCHED, UM, FROM JUST PATIENT CARE TO MORE, UH, MEDICAL EDUCATION AND TEACHING DOCTORS AND RESIDENTS, YOU KNOW, DOCTORS IN TRAINING AND SOCIAL WORKERS AND CHAPLAINS AND SPEECH PATHOLOGISTS, WHATEVER, TO LEARN MORE OF THESE SKILLS, UM, SO THAT WE CAN ALL WORK TOGETHER TO PROMOTE, UM, YOU KNOW, PATIENT-CENTERED CARE.
SO IN THE COURSE OF THAT, I CAME ACROSS THIS GRAPHIC.
SO I INVITE YOU TO TAKE A LOOK AT THE DIFFERENT COPING SKILLS GRAPHICS AND SEE IF YOU CAN IDENTIFY, UH, TWO THAT YOU, YOU KNOW, TEND TO USE OR WOULD LIKE TO USE, ET CETERA.
UM, BECAUSE WE ALL HAVE COPING, UM, YOU KNOW, MECHANISMS, BUT IT'S ALSO GOOD TO BE AWARE OF THEM, RIGHT? SO FOR MYSELF, I REALLY LIKE JOURNALING THAT HELPS ME TO PROCESS MY EMOTIONS AND, WHICH IS WHAT I STARTED TO DO.
UM, I ALSO STARTED USING HUMOR IN THESE KIND OF SERIOUS ILLNESS SITUATIONS TO KIND OF BREAK THE ICE A LITTLE BIT.
I USED TO BE VERY SERIOUS, YOU KNOW, BEING CHINESE RESERV VERY SERIOUS.
BUT THEN I MARRIED MY HUSBAND AND HE'S COMING FROM LIKE A VERY MIXED BACKGROUND, GERMAN, POLISH, IRISH ITALIAN, KIND OF A MIXTURE.
AND THEY WOULD LIKE JOKE AROUND ALL THE TIME.
AND IT USED TO STRESS ME OUT BECAUSE THEY WOULD LIKE SAY SOMETHING AND I'M LIKE, ARE YOU JOKING? OR IS ARE YOU FOR REAL? I COULDN'T TELL, UH,
AND SO THEY SAID THEY, THEY WOULD LIKE THINK OF ME AS VERY LIKE, SNOBBISH BECAUSE I WAS JUST SO SCARED.
I WAS LIKE, I DUNNO WHAT'S GOING ON OVER HERE.
BUT THEY WOULD THINK THAT I'M VERY SNOBBISH BECAUSE I DON'T LIKE TALK TO THEM THE WAY THEY DO.
SO EVENTUALLY I HAD TO LIKE GET USED TO THAT TOO.
UM, THE OTHER THING AFTER THE PANDEMIC ESPECIALLY, IS GETTING ENOUGH SLEEP.
LIKE SLEEP IS MY TOP HOBBY RIGHT NOW.
UM, I THINK I GOT, YOU KNOW, I STAYED OVER LAST NIGHT WITH PAT AND H AND I THINK I GOT UP PRETTY LATE.
THEY WERE LIKE, MAYBE SHE DIED.
UM, BUT I JUST TRY TO GET ENOUGH SLEEP AND THEN TAKE WALKS.
UM, ALSO MAKE A GRATITUDE LIST, JUST THINKING ABOUT WHAT ARE SOME THINGS LIKE FOCUSING ON WHAT I HAVE, NOT WHAT I DON'T HAVE.
BECAUSE IF I FOCUS ON THAT, I COULD BE VERY MISERABLE.
UM, AND THEN ASKING FOR HELP WHEN I NEED IT, WHICH IS, WAS ALSO HARD FOR ME BECAUSE IN MEDICINE WE ARE TRAINED TO, YOU'RE SUPPOSED TO KNOW EVERYTHING.
UH, YOU'RE SUPPOSED TO DO EVERYTHING PERFECTLY, AND IF YOU DON'T, YOU'RE A FAILURE, UH,
SO I'M TRYING NOT TO DO THAT, NOT TO FALL INTO THAT.
AND REALLY IN GRADUATE MEDICAL EDUCATION, GIVE ROOM FOR, YOU KNOW, TRAINEES NOWADAYS TO SAY IT'S OKAY TO ASK FOR HELP.
YOU DON'T HAVE TO KNOW EVERYTHING.
AND A LOT OF MY TRAINEES TELL ME, OH, IN MEDICAL SCHOOL OR RESIDENCY, I WAS TOLD NOT TO USE AI BECAUSE THAT'S CHEATING.
WELL, IT'S NOT CHEATING IF EVERYBODY USES IT.
RIGHT? UM, YOU USE IT TO AUGMENT YOUR SKILLS, NOT TO LIKE, YOU KNOW, PREVENT YOU FROM LEARNING.
UM, SO WHAT ARE A COUPLE THINGS THAT PEOPLE LIKE, YOU KNOW, FROM THIS LIST FOR COPING? CHOCOLATE.
[00:30:02]
EXCELLENT.SO FIND SOMETHING THAT SPEAKS TO YOU.
UH, MUSIC CAME UP AS A THEME ALSO.
I THINK, UH, WHAT YOU SAID ABOUT WRITING DOWN YOUR I DO THAT MYSELF.
WRITING DOWN THOUGHTS OR JOURNALING OR JUST NOTES.
AND, UH, I ALSO LIKE WRITING DOWN GOOD ADVICE THAT PEOPLE TELL ME.
UH, SO I HAVE LIKE A, IN MY, UH, IPHONE, LIKE A NOTE FOR THAT.
LIKE, WHEN MY MOM USED TO GIVE ME ADVICE OR MY MOTHER-IN-LAW GIVE ME ADVICE, I USED SAY, NO, DON'T, JUST DON'T.
UH, BUT THEN EVENTUALLY LIKE, BE OPEN AND LISTEN.
I WAS LIKE, YEAH, THERE'S SOME WISDOM TO THAT.
SO I STARTED WRITING DOWN AND THEN H WAS TELLING ME SOME OF HIS FAVORITE QUOTES TODAY, SOME OF 'EM ARE A LITTLE RACY, SO CAN'T SHARE THEM, BUT HE, HE CAN TELL YOU.
UM, OKAY, SO ONE OF THE THINGS, UM, THAT I REALIZED IS THAT I LEARNED ABOUT IS THE MASLOW'S HIERARCHY OF NEEDS.
I LEARNED THAT FROM ONE OF OUR SOCIAL WORKERS IS THAT THERE'S THIS PYRAMID AND WHAT'S AT THE BOTTOM, THE PHYSIOLOGICAL NEEDS IS SUPER IMPORTANT, AND A LOT OF US SACRIFICE THEM, YOU KNOW, THINKING THAT WE CAN BYPASS THAT AND MOVE ON TO MORE IMPORTANT THINGS.
BUT ESPECIALLY DURING COVD, THE BASIC THINGS LIKE BREATHING DURING COVID, THAT WAS, YOU KNOW, THAT BECAME A BIG THING, RIGHT? FOOD AND WATER AND SHELTER AND CLOTHING AND SLEEP ARE VERY, VERY KEY.
AND THAT'S WHY THEY'RE THE BASICS.
AND WE NEED TO PAY ATTENTION TO THOSE.
AND I REMEMBER DURING THE WHOLE COVID PANDEMIC, I WAS TRYING TO GRAB RESOURCES FOR MY GRADUATE MEDICAL EDUCATION.
MY, MY RESIDENTS AND FELLOWS WERE IN TRAINING, MY NURSES, MY SOCIAL AND MY TEAM, UM, AND TRYING TO GET THEM TO SPEAK TO LIKE COPE, NYP, WHICH IS THE, UH, THE PSYCHOLOGICAL SUPPORT, UM, GROUP.
AND WHAT I WAS GETTING WAS, NO, I DON'T NEED THAT.
I NEED TIME TO GO TO THE BATHROOM.
I NEED MY PPE, AND THEN WE'LL TALK ABOUT THE REST.
OTHERWISE, I'M NOT GOING TO ANY GROUPS MEET MY BASIC NEEDS
UH, SO IT JUST BECAME, UH, VERY ABUNDANTLY CLEAR HOW WE HAVE THIS MASLOW'S PARK AND HOW WE HAVE TO PAY ATTENTION ONCE YOU GET THE BASIC NEEDS MET AND HAVING THE SAFETY, SECURITY, THE BELONGING IN, YOU KNOW, LIKE IN THIS COMMUNITY, THEN YOU CAN GET TO THINGS LIKE SELF-ACTUALIZATION AND MORE HIGHER LEVEL THINGS.
UM, AND IT WAS REALLY GOOD QUOTE, I GOT INTO TONY ROBBINS, HE'S LIKE THIS BIG INSPIRATIONAL SPEAKER, BUT HE WAS TALKING ABOUT HOW PEOPLE WHO DO NOT HAVE GOOD HEALTH, UH, NO PEOPLE WHO HAVE GOOD HEALTH HAVE A MILLION DREAMS AND GOALS.
PEOPLE WHO DO NOT HAVE GOOD HEALTH HAVE ONE GOAL TO GET HEALTHY, RIGHT? SO THE BASIC NEEDS AND HOW IMPORTANT IT IS.
THE OTHER THING THAT I LEARNED ABOUT IN TERMS OF EMOTIONS DURING COVID IS PRIOR TO COVID, I, IF SOMEBODY SAID, YOU KNOW, UNDER TOUGH SITUATIONS, WOULD YOU RATHER LAUGH OR CRY? I WOULD SAY I CHOOSE LAUGHTER.
YOU KNOW, I WAS VERY CLOSE TO MY GRANDMOTHER.
SHE GAVE ME MY CHINESE NAME, WHICH MEANS HAPPY HEART.
SO I ALWAYS CHOOSE TO BE HAPPY AND OPTIMISTIC WHEN I CAN.
SO I CHOOSE LAUGHTER OVER CRYING.
BUT DURING COD AND AFTER, I WAS LIKE, CRY, JUST CRY YOUR HEARTS OUT.
YOU KNOW, IT IS A BIG RELEASE.
I WAS TALKING TO ONE OF MY FRIENDS, HE'S PULMONARY CRITICAL CARE SPECIALIST.
ONE DAY WE'RE JUST LIKE TREATING NOTES HOW ARE WE'RE COPING? AND HE GOES, WE GOT SO BAD.
WE'RE LIKE SO MANY SICK PATIENTS.
WE'RE TRYING NOT TO INTUBATE THEM.
YOU KNOW, EVERY TIME YOU TURN AROUND THERE'S ANOTHER CODE AND BLAH, BLAH, BLAH.
YOU DON'T KNOW WHICH WAY TO RUN.
AND ONE DAY HE JUST DUCKED UNDER HIS DESK AND JUST STARTED CRYING.
SO THEN HE USED THAT AS A COPING SKILL.
LIKE I WOULD JUST FEEL LIKE CRYING OUT OF NOWHERE.
SO ONE OF MY SELF ACTUALLY ATION THINGS, BECAUSE I'M ALSO IN AN ACADEMIC TRACK, IS TO PUBLISH, RIGHT? PUBLISH OR PERISH.
SO I WOULD START TURNING SOME OF MY CASES INTO PUBLICATIONS.
I WROTE ABOUT A PATIENT WHO REALLY WANTED TO GO HOME, BUT SHE COULDN'T ANYMORE.
AND THEN WE, UH, SHE DIDN'T WANNA GO HOME LIKE IN QUEENS, RIGHT? SHE WANTED TO GO HOME TO THE PHILIPPINES, BUT SHE WAS SO SICK SHE COULDN'T GO.
SO WE ENDED UP MAKING VIDEOS OF, UH, HER SAYING THINGS AND SAYING GOODBYE AND SENT IT HOME.
THAT WAS BEFORE THE AGE OF ALL THESE, YOU KNOW, EASY SOCIAL MEDIA THINGS.
AND THEN, UM, WHAT ABOUT HOW LONG PEOPLE COULD LIVE AFTER, UM, A LIBERATION FROM THE VENTILATOR, BECAUSE WE ALSO HAD A LOT OF PATIENTS AND FAMILIES WHO CHOSE THAT AFTER LIVING ON A VENTILATOR FOR SOME TIME ON LIFE SUPPORT, AND THEN REALIZING THEY'RE NOT GETTING BETTER.
UM, AND THEN THEY WANNA BE LIBERATED FROM IT.
SO THIS IS ALSO SOMETHING THAT WE LEGALLY CAN DO IN THIS COUNTRY, BUT MANY OTHER COUNTRIES WILL NOT DO THAT.
UM, AND THEN WE HAD A ETHICAL CASE ABOUT CAN ORTHODOX JEWISH PATIENTS UNDERGO A PALLIATIVE EXTUBATION, UH, BECAUSE THE RABBI WOULDN'T, YOU KNOW, LET THAT HAPPEN.
AND HOW WE MEDIATED A FAMILY MEETING DISCUSSION THAT ALLOWED A PATHWAY.
THAT'S WHEN SOMEBODY'S ON A, UH, LIFE SUPPORT LIKE WITH, UH, UM, BREATHING MACHINES, SUPPORTING THEIR BREATHING, UH, WITH A TRACH AND A TUBE THAT GOES INTO THEIR AIRWAY.
MANY OF THOSE PATIENTS DON'T HAVE REALLY A GOOD MENTAL STATUS.
[00:35:01]
SOME TIME ON THAT, THEY REALIZE THAT THAT'S NOT FOR THEM ANYMORE.BUT HOW DO YOU, YOU KNOW, IF YOU SEPARATE THEM FROM THE BREATHING MACHINE, THEY'RE GONNA DIE.
AND THEN ARTICLES ABOUT RESUSCITATION DISCUSSIONS.
WHAT WAS THE OUTCOME OF THE, UM, FAMILY THEY ACCEPTED? UM, YEAH.
SO WHAT HAPPENED WAS THE PATIENT CAME IN AND, UM, THE PATIENT WAS INTUBATED BECAUSE, UH, THE BREATHING WAS NOT GOOD.
ALSO, THEY HAD BRAIN DAMAGE FROM BLEEDING INSIDE THE BRAIN.
AND, UM, THE PATIENT COULDN'T PARTICIPATE AND WE ENDED UP HOLDING, BUT, UH, THE FAMILY WAS VERY, UH, UM, RELIGIOUS.
SO WE ENDED UP HOLDING A FAMILY MEETING WITH THE FAMILY, THE RABBI FROM THE HOSPITAL, THE RABBI FROM THE COMMUNITY, THE CRITICAL CARE TEAM, AND THE PALLIATIVE CARE TEAM.
LUCKILY THE PATIENT DID HAVE ADVANCED DIRECTIVES AND THE SON WAS VERY OUTSPOKEN ABOUT IT AND SAID, LISTEN, LET'S MAKE IT SIMPLE.
YOU KNOW, MY FATHER SAID THREE THINGS.
I DON'T WANNA BE IN PAIN, I DON'T WANNA BE A VEGETABLE, AND I WANNA DO IT THE JEWISH WAY.
UM, SO THAT'S WHY WE HAD TO GO ON.
BUT GIVEN THAT HE HAD A BRAIN BLEED, IT'S POSSIBLE.
SO WE'RE GONNA GIVE HIM SOME PAIN MEDICATION TO CONTROL THE PAIN IN CASE HE HASN'T.
BUT WE DON'T KNOW, IS HE A VEGETABLE? WELL, HE'S NEVER GONNA GET BETTER.
HE'S NOT GONNA WAKE UP AND TALK TO US.
EVENTUALLY HE'LL BE IN A VEGETATIVE STATE.
AND WHAT IS THE JEWISH WAY? WHAT DOES THAT MEAN? RIGHT? WELL, YOU KNOW, WE DON'T WANT HIM TO SUFFER, BUT IT'S ALSO LIKE IF YOU DISCONNECT HIM FROM THE VENTILATOR, THAT WILL BE KILLING HIM CAUSE AND EFFECT.
SO WE CAN'T DO THAT, BUT WE KNOW HE DOESN'T WANNA LIVE, YOU KNOW, A LONG, LONG EXISTENCE AS A VEGETABLE.
SO WHAT DO WE DO? SO THE RABBI STARTED TALKING AND SAID, WELL, YOU KNOW, IT DEPENDS ON THE TIMING, RIGHT? BECAUSE IF THE TIMING IS THAT IF YOU STOP THE VENTILATOR AND DISCONNECT HIM AND HE DIES RIGHT AWAY, CAUSE AN EFFECT, WE KILLED HIM, THAT'S NO GOOD.
BUT WHAT IF, WHAT IF HE COULD LIVE SOMETIME BETWEEN TAKING HIM OFF THE VENTILATOR AND THEN HE DYING? WE COULD POTENTIALLY RECOGNIZE THAT AS A NATURAL DEATH.
THEY'RE LIKE, OKAY, ALRIGHT, SO WHAT IS THAT SEPARATION IN TIME? SO, WELL, WE DON'T WANNA BE UNREASONABLE HERE.
AND I WAS LIKE, OKAY, DON'T SAY SIX MONTHS.
SO THEY CAME UP WITH, WELL, WE'RE TALKING ABOUT A FEW HOURS, FOUR OR SIX HOURS, SOMETHING LIKE THAT.
I WAS LIKE, ALL RIGHT, THAT'S LIKE A PALLIATIVE EXTUBATION, YOU KNOW? SO WE CAN ASK THE PULMONARY CRITICAL CARE DOCTORS TO DO LIKE A SPONTANEOUS BREATHING TRIAL AND SEE IF HE CAN BREATHE ON HIS OWN.
UM, NO GUARANTEES, BUT WE CAN GIVE AN ESTIMATE.
SO IN THIS CASE, THE PATIENT WAS ABLE TO TRIGGER HIS OWN BREATH ONCE THEY TEMPORARILY STOPPED THE BREATHING MACHINE, AND THE THOUGHT IS THAT HE COULD BREATHE ON HIS OWN FOR A REASONABLE NUMBER OF HOURS LIKE THAT.
SO THE DECISION MOVED FORWARD, AND, UM, WE DID THAT AND THE PATIENT WAS BREATHING ON HIS OWN.
HE WAS IN NO DISTRESS, HE WAS BREATHING ON HIS OWN.
SO I LEFT AROUND SEVEN, EIGHT O'CLOCK THAT NIGHT.
I SAW THE FAMILY AND THEY SAID, OH, HE'S BREATHING ON HIS OWN.
NOW THE ICU DOCTORS ARE ASKING ME, WHAT ABOUT A FEEDING TUBE? AND I SAID, NO, NO FEEDING TUBE.
LET'S JUST WAIT OVERNIGHT AND SEE WHAT HAPPENS.
AND THE PATIENT DIED OVERNIGHT.
AND EVERYBODY WAS VERY, YOU KNOW, GRATEFUL FOR THE FACT THAT HE WAS ABLE TO DIE A NATURAL DEATH, AND IT WAS OKAY.
SO AFTER THAT, WHEN I PUBLISHED THIS ABSTRACT, UM, CRITICAL CARE DOCTOR FROM FLORIDA CALLED ME UP AND SAID, I SAW THE ABSTRACT.
WHAT HAPPENED? BECAUSE I HAVE A CASE EXACTLY LIKE THIS RIGHT NOW.
LIKE, WHAT DID YOU DO? SO THESE THINGS HAPPEN, YOU KNOW, EVERYWHERE.
SO I STARTED TO JOURNAL AND PROCESS MY OWN EMOTIONS, AND AFTER A WHILE I STARTED TO SEE THEMES.
UH, SOME OF THE THEMES IS THAT ADVANCED DIRECTIVES ARE NOT REALLY GETTING DONE.
THIS IS ACTUALLY AN ABNORMAL GROUP, JUST SO YOU KNOW.
UM, AND IN THAT, MANY PEOPLE HAVE IT, BUT VAST MAJORITY HAVE NOT.
BUT THE MOTTO FOR ADVANCED DIRECTIVES IN APRIL IS ADVANCED CARE PLANNING MONTH, IS THAT IT ALWAYS SEEMS TOO EARLY UNTIL IT'S TOO LATE.
IT IS JUST NOT A PLEASANT THING TO TALK ABOUT, RIGHT? BUT WE HAVE TO, RIGHT? AND FAMILIES STRUGGLE TO GUESS.
IF WE DON'T TALK ABOUT IT AND DON'T EXPLICITLY TELL OUR FAMILIES WHAT'S IMPORTANT TO US, WHAT WE WANT, WHAT WE DON'T WANT, THEN THEY WILL STRUGGLE BECAUSE THEY REALLY DON'T KNOW.
EVEN YOUR CLOSEST FAMILY MEMBERS WILL NOT KNOW.
THEY'LL JUST SUBSTITUTE WHAT THEY WANT FOR THEMSELVES FOR WHAT YOU WANT, RIGHT? AND THEN THAT LEADS TO FAMILY FEUD, STRESS FIGHTS, THINGS LIKE THAT.
PATIENTS ENDING UP CRITICAL, OH, WHAT I SAID ALREADY, YOU KNOW, WAKE HER UP, WE CAN'T WAKE HER UP.
UM, AND THEN ANOTHER THING, PHENOMENON THAT WE DISCOVERED IS THAT FAMILY MEMBERS FROM FAR AWAY WHO HAVEN'T BEEN INVOLVED, AFTER WE'VE HAD ALL THE CONVERSATIONS HERE, THEY WOULD ALL OF A SUDDEN SHOW UP AND SAY, OH NO, YOU HAVE TO DO THIS AND YOU HAVE TO DO THAT.
DID YOU DO THIS? DID YOU DO THAT? WE'RE LIKE, YES, WE'RE DONE, BUT YOU HAVEN'T BEEN HERE.
AND ACTUALLY, THERE WAS A MEDICAL ARTICLE ABOUT THIS.
IT'S CALLED A BLACK SHEEP ON A WHITE HORSE SYNDROME,
[00:40:01]
APPARENTLY ANOTHER PHYSICIAN ALSO, I'VE BEEN DEALING WITH THIS AND SAID, THERE'S NO NAME FOR THIS.
SO AT LEAST NOW THERE'S A NAME FOR THE SYNDROME.
AND WHEN I WORKED AT SINAI, ALL THESE FAMILY MEMBERS SEEM TO BE COMING FROM CALIFORNIA.
NOW THAT I AM IN QUEENS, THEY ALL SEEM TO BE COMING FROM CHINA, AND VISA IS AN ISSUE.
UM, SO THEY CAN'T COME QUICKLY LIKE THEY CAN FROM CALIFORNIA.
SO, UH, GOING FROM EMOTIONS TO THE THEMES THAT I, UH, NOTICE, IS THAT A LOT OF PEOPLE DO NOT HAVE ADVANCED REACTIVES.
AND THERE'S DATA TO SHOW FROM JAMA, WHICH IS A RENOWNED MEDICAL JOURNAL THAT TWO OUT OF THREE ADULTS HAVE NOT COMPLETED IN ADVANCED REACTIVES.
THE VAST MAJORITY OF PEOPLE IN PUBLIC POLLS, 95% THINK THAT IT'S IMPORTANT.
UH, 95% OF DOCTORS ALSO THINK IT'S IMPORTANT WHEN YOU ASK THEM WHO SHOULD START THAT CONVERSATION? THE PATIENT SAY, NO, DOCTOR SHOULD START THAT CONVERSATION.
AND THE DOCTOR SAY, NO, PATIENT SHOULD START THAT CONVERSATION.
SO, YOU KNOW, JUST LIKE LEAVE IT TO THE OTHER PERSON.
OTHER THEMES THAT I FOUND INCLUDE MUSIC.
SO FRANK SINATRA, MY WAY, THAT'S LIKE NUMBER ONE TOP SONG FOR END OF LIFE.
UH, FOOD ISSUES COME UP A LOT.
UM, ARTIFICIAL NUTRITION, COMFORT, FEEDING TO FEED OR NOT TO FEED FOOD IS LOVE.
SO IT BECOMES LIKE A BIG ISSUE.
UM, RELIGION, SPIRITUALITY, THAT'S SUPPOSED TO ME TALKING TO THE RABBI, UM, TRAINED AT CHENEY AT MAN SINAI, IF YOU LIKE.
UM, THERE'S A LOT OF LIKE CROSSOVER THEMES BETWEEN CHINESE PEOPLE AND JEWISH PEOPLE.
AND THEN ONE THING THAT'S, UH, VERY UNEXPECTED WAS LIKE SEX AND INTIMACY THAT STARTED HAPPENING WHEN I WAS DOING HOSPICE HOUSE CALLS.
UM, YEAH, I, I WAS DOING A, UH, HOUSE CALL.
SHE WAS IN BED, SHE COULDN'T MOVE.
SHE WAS IN HER NINETIES AND SO WAS HER HUSBAND.
AND APPARENTLY THEY WERE VERY CLOSE, YOU KNOW, INTIMATELY.
AND SO I WAS EXAMINING HER AND THE HUSBAND WAS FOLLOWING ME AROUND AND HE'S LIKE, DOCTOR, IS SHE GONNA BE OKAY? I'M LIKE, WELL, YOU KNOW, SHE'S VERY, VERY SICK, RIGHT? AND I SAID, WELL, I CAN'T LOSE HER.
AND I SAID, YEAH, YOU GUYS ARE VERY CLOSE, RIGHT? HE GOES, WHAT AM I GONNA DO ABOUT THIS? I'M LIKE, THIS, WHAT'S THIS? I'M LIKE, OKAY, WHERE'S THE DOOR HOUSE CALLED? RULE NUMBER ONE, BE CLOSE TO THE DOOR.
UH, SO I'M LIKE, INCHING TOWARDS THE DOOR.
I'M LIKE, WHAT MEDICATIONS ARE YOU TAKING? TRYING TO DECIDE, YOU KNOW, IF ANY MEDICATIONS ARE CAUSING THIS? OR LIKE IN GENERAL, NO, NO, NO, NOT TAKING NONE OF THIS.
I'M LIKE, OKAY, SIR, I HAVE A SOLUTION.
HE GOES, WHAT DOC? AND I SAID, YOU'RE GONNA HAVE TO USE YOUR HANDS.
I WAS LIKE, THAT'S A GOOD ANSWER, CYNTHIA.
I JUST SAID, OKAY, FINISH THE VISIT.
GO, AH, AND THEN OTHER STUFF WOULD BE HAPPENING.
I'M LIKE, WHAT'S THIS? SO THAT BECAME A CHAPTER IN MY BOOK CALLED SEX IN THE CITY AT THE END OF LIFE.
LIKE, I LOVE THAT SHOW, SEX IN THE CITY.
UM, AND THEN OTHER THINGS THAT I OBSERVE FROM MY JOURNALING IS THAT PATIENTS WHO ARE FEARFUL GENERALLY HAVE A TOUGHER TIME THAN PATIENTS WHO ARE WILLING AND OPEN TO FACE REALITY AND TALK ABOUT IT, RIGHT? IF YOU SAY, OOH, WE CAN'T TALK ABOUT THIS IN MY FAMILY, MY CULTURE AND MY RELIGION, OH, WHATEVER, THEN YOU'RE GONNA HAVE A TOUGHER TIME BECAUSE YOU KNOW IT'S HERE AND YOU CAN'T TALK ABOUT IT.
UH, PEOPLE WHO EMBRACE YOUR EMOTIONS AND ARE WILLING TO DEAL WITH THEM GENERALLY HAVE AN EASIER TIME COPING.
THEN THOSE PEOPLE WHO ARE VERY CLOSED UP AND JUST BOTTLE UP AND THEN ERUPT AS A VOLCANO.
AND THEN PEOPLE WHO ASK FOR HELP TEND TO GET HOPE, RIGHT? I LEARNED THAT AT MOUNT SINAI SAID, IT'S OKAY TO TALK ABOUT YOUR PROBLEMS. IT'S NOT TO COMPLAIN OR B***H, HM, WHICH IS EVERY NEW YORKER'S RIDE TO B***H.
UM, I THINK THAT WAS A LINE FROM GHOSTBUSTERS, BUT ALSO IF YOU ASK FOR HELP, YOU KNOW, YOU TALK ABOUT YOUR PROBLEMS, SOMEBODY IS APT TO COME UP WITH SOME SORT OF SOLUTION OR POSSIBILITY.
BUT THEN I REALLY REALIZED THAT WITH EACH PATIENT AND FAMILY THAT I SAW, IT WAS SO SIMILAR SITUATION.
EVEN THOUGH I HAD GAINED ALL THIS KNOWLEDGE, IT DOESN'T SEEM TO BE, HOW AM I DOING ON TIME OVER HERE? 10 TO THREE NOW.
SO, UM, THAT'S WHEN I, UH, THOUGHT THAT THE IDEA OF A BOOK, YOU KNOW, SHOULD COME UP AND I SHOULD FIND THE RIGHT TIME TO DO IT.
UH, AND THEN THE PANDEMIC HAPPENED.
TWO OF MY FRIENDS ACTUALLY PUBLISHED THEIR BOOKS DURING THE PANDEMIC BECAUSE THEY GOT LOCKED DOWN AND THEY HAD TIME, AND I WAS GETTING KILLED.
UH, I DIDN'T, I COULDN'T DO IT.
I WAS EXTRA BUSY AND I GOT SICK, AND LUCKILY I GET BETTER.
SO AFTER THAT, I SAID, I'M JUST GONNA HAVE TO CHANNEL MY WARRIOR MODE AND WRITE THIS BOOK.
I'M GONNA MANIFEST THIS AS MY GOAL.
AND, UM, IT WILL HAPPEN IN 2024.
MY DAD ALSO PASSED AWAY THAT YEAR, BUT I MANAGED TO GET IT DONE.
UM, AND IT WAS PUBLISHED IN NOVEMBER.
SO I WAS REALLY, REALLY PROUD OF THAT.
[00:45:01]
TO SHARE THREE ADVANCED DIRECTIVE STORIES, BOOKS FROM MY BOOK, UM, ALL ABOUT, YOU KNOW, ONE IS ABOUT ADVANCED DIRECTIVES IN GENERAL, AND THIS THING THAT VERY SMART THING THAT MY PATIENT TOLD ME.ANOTHER ONE IS ABOUT VO AND ANOTHER ONE IS ABOUT DISCUSSING THIS WHOLE THING WITH MY DAD, WHO WAS A VERY STRONG CHARACTER.
SO ADVANCED DIRECTIVES, WHAT MATTERS MOST TO YOU? UH, WHEN I CAME ACROSS THIS THING FROM THE MTA, THE SUBWAY STATION, WHEN YOU GO TO REFILL YOUR METRO CARD, IT ASKS YOU THIS VERY PROFOUND METAPHYSICAL QUESTION.
THE VAST MAJORITY OF PEOPLE WANNA ADD VALUE.
WELL, THE VAST MAJORITY OF PEOPLE WANT BOTH.
BUT SUPPOSE YOU CAN'T HAVE BOTH.
WHICH ONE WOULD YOU RATHER HAVE? SO THAT'S A DECISION YOU HAVE TO DECIDE FOR YOURSELF.
MOST PEOPLE THAT I'VE POLLED HAVE SET VALUE AND SOME PEOPLE HAVE SET TIME.
THERE'S ABOUT MAYBE 80 20, 90 10, SOMETHING LIKE THAT.
SO YOU HAVE TO DECIDE FOR YOURSELF.
UM, MR QUALITY, MR. M WAS A ELDERLY GUY FROM THE NURSING HOME THAT I SAW.
HE HAD THREE, FOUR DIFFERENT REASONS FOR RESPIRATORY FAILURE.
AND HE CAME HOME TO THE HOSPITAL.
WE EVENTUALLY FOUND OUT THAT BOTH HIS WIFE AND DAUGHTER WHO ARE LISTED AS HIS HEALTHCARE PROXIES HAVE PASSED AWAY.
UM, SO HE'S, HE UNDERSTANDS AND HE ALREADY TOLD THE MEDICAL TEAMS THAT HE DID NOT WANNA BE RESUSCITATED OR INTUBATED.
UM, AND HE'S OPEN TO DISCUSSING THESE THINGS.
AND I ASKED HIM WHAT WAS IMPORTANT TO HIM.
AND HE SAID, HE'S IN A NURSING HOME.
HE DOESN'T HAVE A LOT OF FREEDOM.
HE CAN'T, YOU KNOW, DO EX UM, UH, STRENUOUS THINGS BECAUSE HE GETS SHORT OF BREATH.
AND HE SAID, THERE'S REALLY THE LITTLE THINGS.
NOW IF IT'S SUNNY OUTSIDE AND SOMEONE CAN WHEEL ME OUT IN A WHEELCHAIR FOR FRESH AIR, THAT MAKES MY DAY, THAT'S THE MOST IMPORTANT THING.
UH, HE WAS ON A BIPAP, WHICH IS THAT TIGHT FITTING MASK BECAUSE OF HIS RESPIRATORY FAILURE, PNEUMONIA.
AND THEN I SAID, WHAT ABOUT OTHER THINGS THAT MIGHT HAPPEN? WHAT IF EVENTUALLY YOU CAN'T SWALLOW ON YOUR OWN AND DOCTORS TALK TO YOU ABOUT A FEEDING TUBE? YOU KNOW, WHAT IF YOUR KIDNEYS FAIL AND NOW YOU'RE FACED WITH DIALYSIS OR NO DIALYSIS? WHAT ARE YOU GONNA DO? HE GOES, AH, LET'S DEAL WITH THAT WHEN IT COMES.
I'M LIKE, NO, WHEN THAT COMES, LIKELY YOU WON'T BE ABLE TO TELL US.
I SEE MANY SITUATIONS LIKE THAT.
HE GOES, HOW ABOUT THIS? LET'S JUST KEEP IT SIMPLE.
IF I CAN'T TALK, THEN DON'T DO IT.
I WAS, I IT'S LIKE, THAT'S BRILLIANT, BECAUSE THE NEW YORK STATE LAW RIGHT NOW IS THE DEFAULT MODE IS DO EVERYTHING.
IF YOU DON'T HAVE ADVANCED DIRECTIVES AND YOU CAN'T TELL ME, THEN DO, DO, DO DO, DO EVERYTHING.
ASSUME EVERYBODY WANTS TO LIVE AS LONG AS POSSIBLE.
SO HE JUST SWITCHED THE TRACK, RIGHT? IF I CAN TALK, ASK ME, YES, WE WOULD DO THAT.
IF I CANNOT TALK, THEN DON'T DO IT.
'CAUSE RIGHT NOW IS YOU CANNOT TALK, DO IT.
THEN THE OTHER GUY, MR. QUANTITY, NOT HIM, HIS WIFE ACTUALLY, HE'S ALSO ANOTHER ELDERLY GENTLEMAN.
HE WAS IN THE CORONARY INTENSIVE CARE UNIT.
HE'S MARRIED TO THIS VERY STRONG-WILLED WIFE.
IT IS VERY OBVIOUS WHO CALLS THE SHOTS IN THE HOUSE.
UM, HE WANTED TO BE ALSO DO NOT RESUSCITATE.
HE WAS ASKING ABOUT HOME HOSPICE.
WE WENT TO SEE HIM FOR PALLIATIVE CARE CONSULT, AND HE WAS TELLING US, I'M A GROWN MAN.
I CAN'T DO ANYTHING FOR MYSELF.
IT'S LIKE, THERE'S NO DIGNITY.
THE WIFE CHIME RIGHT IN AND SAYS, DON'T LISTEN TO HIM.
IF HE GETS ON THE MACHINE, KEEP HIM ALIVE FOR AS LONG AS POSSIBLE.
JUST THIS IS, THIS WHOLE CONVERSATION IS STRESSING ME OUT.
WE LOOK AT THE PATIENT, WHAT DO YOU, WHAT, WHAT, YOU KNOW, DO YOU HAVE ANY QUESTIONS? WHAT DO YOU THINK ABOUT ALL THIS? HE GOES, I WENT ON ABOUT HOME HOSPICE.
SO WE TALK ABOUT THAT FOR ANOTHER COUPLE MINUTES, AND THE WIFE IS LIKE, I'M REALLY STRESSED OUT.
YOU NEED TO JUST LEAVE RIGHT NOW.
AND I ASKED THE PATIENT, WHAT DO YOU THINK? HE CLOSES HIS EYES, HE GOES INTO A ZEN MODE.
WE GOT FIRED, YOU KNOW, BY THE, UM, BY THE WIFE.
BUT THE CORONARY CARE TEAM KEPT CALLING US BACK AND WE JUST WENT BACK TO SUPPORT THE TEAM.
BUT IF THE PATIENT IS NOT ALLOWED TO SPEAK AND HE'S OKAY WITH THAT, THEN THERE'S NOT MUCH THAT WE CAN DO THE, YOU KNOW, WHO CALLS THE SHOTS.
AND THEN THE OTHER THING, UH, SPEAKING BACK TO THE, UM, MASLOW HIERARCHY OF, UH, NEEDS IS ALSO TO THINK ABOUT, YOU KNOW, THE URGENT THINGS VERSUS THE IMPORTANT THINGS ALONG THESE LINES.
AND I THINK ADVANCED DIRECTIVES IS ONE OF THOSE THINGS THAT'S IMPORTANT, BUT NOT URGENT.
SO PEOPLE CAN PUT IT OFF UNTIL IT'S TOO LATE.
SO I'M GLAD WE'RE HAVING THIS SESSION TODAY, AND THIS IS THE EISENHOWER MATRIX ABOUT HOW DO YOU WANNA SPEND YOUR TIME? AND WE WANNA BE IN THIS QUADRANT THAT'S LIKE, NOT URGENT, BUT IMPORTANT WHERE WE CAN DO GOALS AND PLANNING.
OKAY? SO THE OTHER THING RELATED TO ADVANCED DIRECTIVES THAT I LEARNED DURING MY COVID ILLNESS WAS THAT EVEN MY LOVED ONES WERE VERY CLOSE.
THEY DON'T REALLY KNOW WHAT YOU WANT.
BECAUSE WHEN MY OXYGEN SATURATION WAS GETTING LOW AND I WAS FEARFUL FOR MY OWN LIFE, I STARTED TALKING TO MY HUSBAND, HE'S AN ER DOCTOR.
[00:50:01]
AND I SAID, IF I GET WORSE, JUST TRY TO GET ME HOME.OXYGEN IN THE MIDDLE OF ALL THIS CRAZINESS.
I DON'T WANNA GO TO THE HOSPITAL.
UM, AND HE SAID, WOW, THAT'S CRAZY.
YOU KNOW, BECAUSE IF I GOT SICK, I WOULD WANNA GO TO THE NEAREST HOSPITAL WHERE THE REM DESI TRIAL INTUBATE ME, DO THIS, DO THAT, AND THEN WE'LL TALK.
SO EVEN THOUGH WE'VE BEEN MARRIED MANY YEARS, OUR ADVANCED DIRECTIVES WERE COMPLETELY DIFFERENT.
IF I HADN'T BROUGHT IT UP, HE WOULD'VE MAYBE LIKE DONE THAT FOR ME, WHICH IS NOT WHAT I WANTED.
AND I ALSO REALIZED THAT IF I DIED TOMORROW, I DIDN'T REALLY HAVE ANY REGRETS AND I'D BE HAPPY, YOU KNOW, WITH WHAT I DID IN MY LIFE.
SO ANOTHER THING TO THINK ABOUT FOR, YOU KNOW, EACH PERSON, UM, THEN THIS ASTORIA, TERRY SHIAVO, WHICH WAS A BIG MISSED OPPORTUNITY.
UM, DO YOU KNOW TERRY SHAVOS CASE? SORT OF.
SHE WAS A YOUNG LADY, YOU KNOW, SHE HAD BULIA.
SHE WAS INDUCING, VOMITING, USING LAXATIVES.
SHE WAS IN FLORIDA, AND THEN SHE ENDED UP IN A VEGETATIVE STATE.
SHE WAS IN THAT STATE FOR ABOUT 10 YEARS.
UH, AND THEN AFTER ABOUT 10 YEARS, HER HUSBAND STARTED SAYING, WELL, LISTEN, I DON'T THINK TERRY WOULD'VE WANTED THAT.
YOU KNOW, SHE HAD A LOVE HATE RELATIONSHIP WITH FOOD.
NOW SHE'S GETTING ARTIFICIAL FEEDING.
I THINK THAT IT SHOULD BE STOPPED.
THE FEEDING TUBE SHOULD BE PULLED OUT.
'CAUSE SHE WOULDN'T WANNA LINGER THIS WAY.
TO WHICH SHE, TERRY'S PARENTS SAID, WELL, YOU KNOW, YOU HAVE A NEW GIRLFRIEND.
WHAT DO YOU CARE? AND TERRY'S IN THERE, YOU KNOW, SHE OPENS HER EYES, SHE LOOKS AT US.
UM, BUT THAT'S WHAT HAPPENS IN PERSIST OF VEGETATIVE STATE.
YOU LOOK AROUND, OKAY, BUT YOU'RE NOT, UH, THE LIGHTS ARE ON, BUT NOBODY'S HOME, SO TO SPEAK.
UM, AND AFTER A LOT OF LEGAL BATTLES AND STUFF, UH, THE FEEDING TUBE WAS REMOVED AND SHE DIED.
UH, I THINK A COUPLE WEEKS LATER YOU CAN LIVE FOR THAT TIME, AMOUNT OF TIME.
SO THE THING TO THINK ABOUT IS THAT, UM HMM.
IF YOU WERE IN TERRY'S SITUATION AFTER ABOUT 10 YEARS LIVING IN A PERSISTENT VEGETATIVE STATE, IF YOU BELIEVE IN IT, WOULD YOU WANT THE FEEDING TUBE TO CONTINUE OR BE STOPPED? SO WHO WANTS IT TO BE CONTINUED? NOT TOO MANY ONE.
WHO WANTS IT TO BE STOPPED? OKAY.
SO IT'S ALSO IMPORTANT IF YOU DO FEEL THAT WAY TO TALK WITH YOUR LOVED ONES, BECAUSE IF YOU DON'T, THEY WOULD NEVER KNOW.
SORRY, I'M A LITTLE WORRIED ABOUT TIME.
LESS PEOPLE ARE HAPPY TO SAY LATER THAN, BUT, UM, OKAY.
WE CAN GO INTO THE NEXT, UH, LEMME TELL.
WE WANNA HAVE, UM, UH, ACTUALLY, IRIS IS GONNA JUST SAY A FEW WORDS ABOUT OH, YES, SORRY.
WE WANNA HAVE HAVE A FEW QUESTIONS, AND THEN WE'RE GONNA HAVE THE, THE WORKSHOP WILL AN UNDERSTAND.
CYNTHIA, ARE YOU OKAY WITH THAT? YES.
I WANNA JUST TELL YOU ABOUT THE ULTIMATE, UH, EXIT STRATEGY, WHICH IS SOMETHING I'VE SUPPORTED FOR MANY, MANY YEARS.
AND IT IS A LAW IN 10 STATES, IN THIS COUNTRY AND IN WASHINGTON, DC IT'S CALLED MEDICAL AID AND DYING.
AND IT WOULD ALLOW YOU TO HAVE SOME PILLS PRESCRIBED TO YOU IF TWO DOCTORS AGREED, IF YOUR MIND IS OKAY.
IF YOU'RE NOT DEPRESSED, THERE'S LOTS OF PROTECTIONS FOR IT.
AND THEN YOU WOULD HAVE THAT OPTION.
YOU DON'T HAVE TO TAKE IT, BUT YOU COULD HAVE IT IN YOUR HOUSE IF, IF YOU HAD ONLY SIX MONTHS TO LIVE.
AND I THINK THIS IS SOMETHING THAT NEW YORKERS SHOULD HAVE THE RIGHT FOR.
MY UNCLE ACTUALLY TOOK ADVANTAGE OF IT IN OREGON, WHICH WAS THE FIRST STATE THAT HAD IT.
AND HE HAD LUNG CANCER, WAS IN TERRIBLE PAIN, AND HE WAS ABLE TO TAKE THIS DRUG, GO TO SLEEP.
HIS FAMILY SAID IT WAS A, IT WAS REALLY A GOOD DEATH.
AND THAT'S SOMETHING THAT I WANT.
AND SO IF YOU AGREE WITH THAT, UH, THERE'S INFORMATION ABOUT THE BILL ON THE TABLE.
AND I PRINTED UP OUR, OUR STATE SENATOR HAS, IT'S, IT'S BEEN HELD IN COMMITTEE FOREVER, BUT IF YOU BELIEVE IN IT AND YOU WOULD WRITE HER A LETTER, I THINK THAT WOULD BE GREAT.
AND IF YOU HAVE ANY QUESTIONS AFTERWARDS, HAPPY TO ANSWER THEM.
WHERE, WHERE ARE THE, WHERE'S THE INFORMATION? THE INFORMATION'S ON THE TABLE.
THE INFORMATION'S ON THE TABLE, AND THESE LITTLE CARDS, WHICH YOU CAN COME IS THE ADDRESSES, HOW TO WRITE, UH, YOUR STATE REP AND STATE SENATOR.
SO WE'RE, WE'RE ACTUALLY GONNA TRANSITION NOW.
SO FIRST OF ALL, LET'S THANKS.
WE DID GET TO THE VERY FINAL STORY.
[00:55:01]
IF PEOPLE HAVE A FEW QUESTIONS.AND THEN WE'LL GO INTO THE WORKSHOP.
SO I THINK QUESTION, SHOULD WE SEND THIS AROUND OR? I HAVE.
SO MY QUESTION IS, I DON'T KNOW IF ANYBODY HERE KNOWS WHAT A MOLS IS, BUT ARE WE STILL USING M IN NEW YORK STATE? I'M RETIRED FOR FIVE YEARS, SO MM-HMM
ARE WE, IS THE MOST I SAW THAT.
SO MOLS IS A NEW YORK STATE FORUM.
IT STANDS FOR MEDICAL ORDERS FOR LIFE SUSTAINING TREATMENTS.
THAT'S FOR PEOPLE WHO REALLY, UH, MAYBE AT THE END, MAYBE ONE TO TWO YEARS, AND GOING BACK AND FORTH TO HOSPITALS SO THAT, UM, THE HEALTHCARE FACILITIES KNOW WHAT THE PATIENTS WANT.
SO THE HEALTHCARE PROXY SHOULD BE FOR EVERYONE, YOU KNOW, HEALTHY OR SICK OR WHATEVER.
BUT THE MOST IS REALLY FOR PEOPLE WHO ARE PRETTY SICK ALREADY.
OTHER QUESTION, CAN YOU FILL, CAN YOU THOUGH THAT WORKS? IF YOU ARE TAKING A WHILE AND DYING THE, GOING BACK AND FORTH, AND YOU HAVE THE OPPORTUNITY THEN TO FILL OUT THE MOST, UM, I HAD ONE NURSE BECAUSE MY HUSBAND GOT A HEART TRANSPLANT.
JUST SAY, YOUR HEALTHCARE PROXY IS NOT ENOUGH.
YOU NEED TO FILL OUT MOST NOW, UM, IS IT OKAY TO FILL OUT MOST BEFORE YOU ARE IN DIRE NEED? MM-HMM
AND IT SEEMS TO ME IT COULD COME IN, IT COULD BE VERY IMPORTANT IF INSTEAD OF HAVING THE OPPORTUNITY AND THE TIME TO CONSIDER IT, WHAT IF THERE IS A SUDDEN ACCIDENT? WHAT IF YOU'RE IN A CAR AND THERE'S AN ACCIDENT AND THESE QUESTIONS ARE IMMEDIATE MM-HMM
THE KIND THAT YOU'RE SAYING, YOU KNOW, YOU CAN TAKE YOUR TIME AND THINK ABOUT IT, BUT THEN NOW IT'S IMMEDIATE.
WHAT DO YOU DO? AND WOULDN'T MOST BE APPROPRIATE IN THAT KIND OF SITUATION TO HAVE NO MOUTH.
SO FOR THE MOST, UM, IF THE, IF THE WISH IS TO, UH, TRY ALL TREATMENTS AND GET RESUSCITATED AND PUT ON THE VENTILATOR, THEN YOU DON'T HAVE TO FILL OUT THE MOST, BECAUSE THAT'S ALREADY THE AUTOMATIC PATHWAY, WHICH IS DUE ALL THE INTERVENTIONS, RIGHT? SO IF THERE'S GONNA BE SOME SORT OF LIMITATION OR A TRIAL PERIOD, LET'S SAY INTUBATION, TRY IT FOR, YOU KNOW, WHATEVER PERIOD OF TIME.
AND THEN IF IT DOESN'T WORK, THEN TAKE IT OFF, THEN THAT, THAT SHOULD BE WRITTEN IN THE MOST.
THAT SHOULD BE WRITTEN IN THE MOST.
BUT IF THE MODE IS TO TRY IT AT LEAST INITIALLY AND DO ALL THE INTERVENTIONS, THEN YOU DON'T HAVE TO FILL OUT THE MOST, BECAUSE THAT'S AUTOMATIC.
SO YOU CAN FILL OUT THE MOST BEFORE YOU ACTUALLY NEED IT.
BUT NOT IF IT'S TO DO EVERYTHING.
BECAUSE IF IT'S TO DO EVERYTHING AND THEN LATER ON THE MEDICAL CONDITION CHANGES, BUT YOU DON'T REALLY CHANGE THE MOST FORMS. SO THEN YOUR LAST KNOWN WISHES IS TO DO EVERYTHING.
I THINK THE FEELING WOULD BE YOU DON'T WANT THESE THINGS DONE RIGHT? THEN YOU DO IT WILL MOST, THE HEALTHCARE PROXY MAY NOT BE ENOUGH.
IT MAY NOT ADDRESS THE PARTICULARS.
UNLESS YOU HAD DISCUSSIONS WITH YOUR HEALTHCARE PROXY AND YOUR PROXY KNOWS YOUR WISHES ABOUT ALL OF THESE THINGS, ISN'T IT ALSO TRUE IF YOU HAVE A LIVING WILL MM-HMM
THAT COULD BE CLEAR AND CONVINCING EVIDENCE TO SHOW WHAT YOUR WISHES ARE.
IF YOU, IF YOU WRITE OUT A LIVING WILL, YOU COULD WRITE OUT A LIVING WILL.
YOU COULD, UH, WRITE A, AN ADDITIONAL COUPLE LINES IN THE HEALTHCARE PROXY TO SAY THOSE THINGS.
THERE'S A LITTLE SECTION IN THE HEALTHCARE PROXY WHERE YOU WRITE, THERE WAS SOMEBODY IN THE BACK.
THERE WAS SOMEBODY IN THE BACK FIRST.
UM, I WAS IN A SITUATION WHERE THE PERSON I WAS TAKING CARE OF, UM, UH, WAS, UH, TERMINAL.
BUT, UM, THE, AND WE WERE AT THE HOSPITAL AND THERE WAS A LITTLE BIT OF A SCRABBLE TO GET THE PROPER DOCUMENTS.
WE, THERE WAS A HEALTH DIRECTIVE AND ALL OF THAT, BUT, UM, THE HOSPITAL WANTED TO TRANSFER THAT INFORMATION TO THEIR OWN FORM.
AND THIS SEEMED TO BE A FAIRLY NEW THING WHERE HOSPITALS DON'T NECESSARILY ACCEPT YOUR FORM.
CAN YOU SPEAK TO THAT? WHERE WAS THE HOSPITAL IN NEW YORK? YES.
WHICH FORM, WHICH FORM WAS THE HOSPITAL FORM THE ONE TO BE TRANSFERRED? WAS IT THE HEALTHCARE PROXY FORM OR DID NOT RESUSCITATE ORDERS? WHAT IT WAS A HEALTHCARE PROXY FORM? YES.
SO I'M NOT SURE, BUT, UM, I GUESS EACH HOSPITAL IS DIFFERENT IN THEIR
[01:00:01]
REQUIREMENTS.THEY CAN DO THAT IN THEIR POLICIES.
BUT THE HEALTHCARE PROXY FORM IS A NEW YORK STATE FORM.
SO THAT SHOULD BE WIDELY ACCEPTED IN NEW YORK STATE.
AND THE MOST FORM IS ALSO A NEW YORK STATE FORM.
SO THAT SHOULD BE WIDELY ACCEPTED EVERYWHERE.
IF IT'S A STRICTLY ONE HOSPITAL, HOSPITAL A FORM, ONCE THE PATIENT LEAVES THE HOSPITAL AND LET'S SAY, GOES TO NURSING HOME B OR HOSPITAL B, THEY WILL NO LONGER ACCEPT THAT FORM BECAUSE IT'S NOT THEIR HOSPITAL.
SO A NEW YORK STATE FORM IS PREFERABLE.
UM, WHAT I'VE READ ABOUT MOST IS THAT IT'S, AND I'VE SEEN IT THAT IT WILL HAVE THE NAME OF THE HOSPITAL ON TOP, BUT IT, AND IT'S ON THIS PINK PAPER, IT ALL HAS TO BE PINK.
UM, AND ALL THAT'S DIFFERENT IS THAT IT HAS THE DIFFERENT HOSPITALS ON TOP.
AND A POINT OF THE MALS IS THAT IT'S COMPLETELY, UM, PORTABLE.
THAT'S A BASIC POINT OF WHY THEY HAVE THE MOST.
SO IT MUST HAVE BEEN NOT, NOT THE MOST, IT WAS SOMETHING TRANSFERRED IT TO THE MOST.
SO THAT'S WHAT'S, THAT'S WHAT'S PORTABLE MM-HMM
WHERE SHOULD WE GO? I THINK, I THINK I SAW THIS ONE.
SO I JUST HAVE A VERY PRACTICAL QUESTION.
MY DOCTOR HAS A COPY, BUT MY DOCTOR IS NOT CONNECTED TO A HOSPITAL SPECIFICALLY.
SO IF I END UP IN THE HOSPITAL, HOW, WHAT'S THE PRACTICAL WAY TO GET THAT INFORMATION THERE? YEAH, THAT'S A GOOD, GOOD QUESTION.
SO WE DEFINITELY RECOMMEND, SO YOU'RE DOING ALL THE RIGHT THINGS BECAUSE YOU HAVE A FORM, YOUR DOCTOR HAS A FORM.
THE HOSPITAL WILL HAVE THE ABILITY TO CALL YOUR DOCTOR'S OFFICE, EVEN IF THEY DON'T PRACTICE THERE TO FAX OVER OR SEND OVER A FORM.
UM, YOU SHOULD ALSO HAVE A FORM THAT YOU CAN PROVIDE.
YOUR HEALTHCARE PROXY SHOULD ALSO HAVE A FORM THAT THEY CAN PROVIDE IN CASE THAT PERSON IS BEING CALLED.
I, I THINK I WAS AN EMT FOR 24 YEARS.
AND WE ALWAYS ASKED FOR THEIR HEALTHCARE FORMS. YEAH.
SO A GOOD IDEA IS IF YOU GET VERY SICK TO HAVE ONE ON YOUR REFRIGERATOR, WE CHECK THERE.
COPYING YOUR REFRIGERATOR, EMTS CHECK THERE.
DO NOT PUT IT IN A SAFETY BOX.
SO CYNTHIA, MAYBE WE SHOULD LAST ONE AND THEN WE SHOULD TRANSITION TO ACTUALLY, UH, MY ISSUE HAS TO DO WITH THE PRIMACY OF THE HEALTHCARE PROXY.
UM, SO THERE'S A LOT OF FORMS THAT PEOPLE SIGN OVER THE, OVER THE YEARS THAT HAVE COME OUT FROM HARVARD AND OTHER PLACES IN WHICH PEOPLE ARE LISTING EXACTLY WHAT THEY WANT.
THEY DON'T WANNA BE INTUBATED, ET CETERA.
AND IT SEEMS TO ME THAT I AM AN EX ICU DOCTOR THAT THE, UH, IF THERE'S A HEALTHCARE PROXY THAT, THAT HEALTHCARE PROXY, UNLESS YOU THINK THEY'RE ACTING AGAINST THE INTEREST OF YOUR PATIENT, HAS PRIMACY OVER THAT BECAUSE OVER A WISH IT HAD BEEN WRITTEN IN THE PAST.
UM, BECAUSE NOBODY KNOWS THE SITUATION UNTIL THE MOMENT THAT THESE REALLY THINGS REALLY COME UP.
AND THAT, THAT'S INCREDIBLY IMPORTANT, I THINK, TO HAVE YOUR HEALTHCARE PROXY KNOW WHAT YOU WANT.
BUT ALSO, I, I THINK I'M CORRECT IN THINKING THAT THE HEALTHCARE PROXY WOULD, UH, OVERRIDE OTHER DOCUMENTS.
SO EACH STATE'S LAWS ARE DIFFERENT.
SO IN NEW YORK STATE, SINCE WE LIVE IN NEW YORK STATE, WE HAVE A HEALTHCARE PROXY LAW.
WE DON'T HAVE A LIVING WILL LAW.
SO LIVING WILL SERIOUS ILLNESS CONVERSATIONS, FIVE WISHES, THEY'RE ALL, UM, WOULD BE CONSIDERED SUPPLEMENTARY INFORMATION.
UM, THE FIVE WISHES ARE ALSO ACCEPTED IN NEW YORK STATE.
BUT I THINK THE HEALTHCARE PROXY LAW WOULD SUPERSEDE THAT.
SO IT WOULD BE GOOD, UM, TO HAVE A HEALTHCARE PROXY AND THEN FOR THE HEALTHCARE PROXY TO HAVE ACCESS TO ALL THOSE DOCUMENTS BECAUSE WE HAVE DEFINITELY SEEN SITUATIONS WHERE HEALTHCARE PROXIES HAVE BEEN APPOINTED WITHOUT KNOWING THAT THEY'VE BEEN APPOINTED HEALTHCARE PROXIES, UH, OR WITHOUT KNOWING SOME OF THE SUPPLEMENTARY, UH, WISHES AND MATERIALS.
SO IT'S A CONVERSATION THAT NEEDS TO TAKE PLACE.
SO I GUESS WE HAVE TO GO INTO YEAH, THAT'S A GREAT POINT, ELLEN.
IS THAT THE EXACT SAME POINT I WAS GONNA MAKE? WHICH IS, UM, YOU KNOW, YOU, I MEAN, THESE SITUATIONS CAN BE VERY MESSY AND THERE'S NO WAY YOU CAN ANTICIPATE EVERY POSSIBLE SITUATION YOU MIGHT BE IN.
SO AS MUCH AS YOU MIGHT FILL OUT A LIVING WILL, OR FIVE WISHES OR WHATEVER, IT MIGHT NOT COVER THE ACTUAL SITUATION THAT YOU END UP BEING IN, AND WHICH IS WHY YOU REALLY NEED TO HELP YOUR PROXY TO UNDERSTAND WHAT YOU WANT.
AND SO THAT'S WHY WE WANT TO GO OVER THE PROXY MM-HMM
SO LET'S, WHY DON'T WE DO THAT? YEAH.
SO EVERY TABLE, I THINK EVERYBODY HAS A COPY OF THE HEALTHCARE PROXY.
UM, IF YOU'VE ALREADY DONE IT, THAT'S
[01:05:01]
FINE.UH, YOU KNOW, IF YOU WANNA CHANGE IT, THIS WILL BE A GOOD OPPORTUNITY FOR IT.
BUT I THINK IT WOULD BE GOOD TO, UM, YOU KNOW, USE SOME OF THE CONTENT THAT WE HAVE DISCUSSED AND THEN MAYBE BREAK UP AT THE TABLE, LIKE TO, IN, TO PAIRS, LIKE PERSON A, PERSON B, IF YOU HAVE THREE PEOPLE, LIKE ODD PEOPLE, IT COULD BE PERSON A, PERSON B, AND THEN LIKE AN OBSERVER PERSON C.
AND THEN GIVE MAYBE TWO MINUTES FOR PERSON A TO TELL PERSON B ABOUT WHAT'S MEANINGFUL IN YOUR LIFE.
WHAT ARE IMPORTANT THINGS, MAYBE TWO OR THREE THINGS THAT BRING JOY AND MEANING INTO YOUR LIFE.
AND THEN ALSO ONE ITEM THAT WORRIES YOU IN TERMS OF ADVANCED DIRECTIVES, THINGS LIKE THAT.
AND THEN FOR TWO MINUTES, AND THEN YOU SWITCH, AND THEN PERSON B TELLS PERSON A ABOUT THAT.
SO DO YOU WANNA ASSIGN PERSON A, PERSON B, BREAK UP INTO PAIRS? IF YOU HAVE THREE PEOPLE, THEN THERE COULD BE AN OBSERVER.
SO WE'LL JUST DO, LIKE, I'M GONNA CALL OUT.
DOES THAT MAKE SENSE? I'M GONNA GIVE A PAIR TWO MINUTES.
I'M GOING TO PUT THE TIMER ON TWO MINUTES.
ALSO, KEEP IN MIND THAT FOR YOUR HEALTHCARE PROXY, YOU SHOULD TELL THEM ABOUT YOUR WISHES ABOUT ARTIFICIAL NUTRITION AND HYDRATION, ARTIFICIAL NUTRITION, HYDRATION.
SOME PEOPLE PROBABLY, I, I APOLOGIZE IF IT WAS A LITTLE CONFUSING, BUT, UH, THIS IS STEP ONE.
I JUST WANT MAYBE TO HAVE MAYBE A COUPLE PEOPLE SHARE, LIKE WHAT THE CONVERSATION WAS, WAS WHAT WAS IMPORTANT TO YOU, WHAT ARE YOUR PREFERENCES FOR ARTIFICIAL NUTRITION OR OTHER THINGS THAT ARE IMPORTANT TO YOU? CAN WE HEAR FROM A COUPLE OF PEOPLE ABOUT THE CONVERSATIONS? DO YOU WANNA START
WHAT WAS THE CONVERSATION HERE? THAT SHE WANTED? PISTACHIO ICE CREAM AND, AND SHE WANTED PISTACHIO ICE CREAM AND TO GO OUT HAPPY.
SO, BELIEVE IT OR NOT, THAT'S VERY IMPORTANT.
BECAUSE IT'S THESE BIGGER PICTURE GOALS THAT REALLY ARE VERY, UM, IMPORTANT.
OTHER THINGS LIKE, WELL, I WANT THIS, OR I DON'T WANT THIS, I WANT THIS ARTIFICIAL MEDICAL INTERVENTION.
IT, IT'S VERY TRICKY BECAUSE, UH, THE MEDICAL SITUATIONS CAN BE VERY DIFFERENT.
SO IF I AM A SITUATION, AND I KNEW THAT HER BIGGEST WISH WAS TO HAVE PISTACHIO ICE CREAM AND TO WHAT? AND TO GO OUT HAPPY, RIGHT? RIGHT.
SO THEN I WOULD ASK FAMILY MEMBERS, OKAY, I'M PRESUMING AT THAT POINT MAYBE SHE WON'T BE ABLE TO TALK TO US.
THAT, YOU KNOW, IF WE PUT HER ON A LIFE SUPPORT WITH AN ARTIFICIAL FEEDING TUBE, WOULD THAT MAKE HER HAPPY? NO.
ALL HER FAMILY MEMBERS WOULD KNOW THAT.
AND COULD SHE HAVE PISTACHIO ICE CREAM NATURALLY FOR THE FLAVOR AT THAT POINT, WITH A ARTIFICIAL FEEDING TUBE? NO.
RIGHT? SHE WAS DYING AND SHE WANTED ICE CREAM.
SO BASED ON THAT, WE'LL SAY, WELL, AN ARTIFICIAL FEEDING TUBE IS NOT GONNA GIVE HER THE QUALITY AND THE TASTE, SO IT'S NOT SOMETHING SHE WOULD LIKE.
SO THESE BIGGER THINGS ARE ACTUALLY VERY IMPORTANT, RATHER THAN THE CHINESE MENU APPROACH.
MY DAUGHTER KNOWS THAT IT WOULD BE CHOCOLATE ICE CREAM.
EVEN IF YOU HAD TO JUST PUT IT UNDER MY LIP AND PLAY MY BARBARA STREISAND TAPE OVER AND OVER AND OVER AGAIN.
THAT WOULD, THAT WOULD BE WONDERFUL.
SO CHOCOLATE ICE CREAM AND BARBARA STREISAND TAPES MUSIC IN AN ENVIRONMENT, WHERE DO YOU IMAGINE THIS HAPPENING? AT HOME, IN THE HOSPITAL, IN A NURSING HOME? AT HOME.
OKAY, SO WITH THE, OKAY, NOW YOU'RE ASKING FOR TOO MUCH.
SO THAT'S ALSO VERY IMPORTANT.
BEING AT HOME IS ONE OF THE, UH, TOP REQUESTS OF PEOPLE.
AND PEOPLE NEED TO KNOW THAT EARLY SO THAT WE DON'T HAVE TO KEEP REPEATING THE STORIES OF PEOPLE SAYING, I WANNA GO HOME.
AND THE DOCTOR SAYING, OH, LET'S TRY ONE MORE THING.
OKAY, LET'S JUST, SO I FIGHT WITHOUT THE DOCTORS A LOT AND SAY, LET'S GET HER HOME WHEN SHE STILL CAN, WHEN THE BLOOD PRESSURE STOPS DROPPING AND WHATEVER.
AND THE EMS IS NOT GONNA TRANSPORT HER.
SO THESE ACTUALLY BIG DIRECTIVES ARE REALLY IMPORTANT.
SO I'M HEARING FOOD AND QUALITY ICE CREAM
[01:10:01]
ESPECIALLY VERY IMPORTANT.UH, ONE MORE AND THEN WE'RE GONNA MOVE.
MY FRIEND'S HUSBAND WAS DYING AND HE WANTED SOME LIQUOR, SO WE PUT IT, I PUT IT IN A DROPPER.
HE HAD THAT AND WE PLAYED GREEK MUSIC.
AND HE WENT OUT VERY NICELY THAT NIGHT.
'CAUSE HE STARTED SINGING AND HE WAS HAPPY.
SO MUSIC, I'M HEARING A RECURRENT THEME WHEN MY DAD WAS VERY SICK, HE ALSO WANTED, LIKE, UH, MUSIC FROM AN ALBUM THAT HE REALLY LIKED.
UM, SO THAT'S ANOTHER VERY IMPORTANT THING.
OKAY, ONE MORE LAST ONE, SORRY.
JUST THAT ONE THING THAT I, I HAD TO COME TO GRIPS WITH IS THAT WHEN, NO MATTER WHAT I WOULD'VE WANTED, OR IT WAS MY HUSBAND WOULD'VE WANTED, YOU HAVE TO, IT'S ALWAYS GOOD TO KEEP IN MIND THAT THINGS WILL, MIGHT VERY WELL BE VERY DIFFERENT THAN YOU PLAN.
AND YOU HAVE TO JUST ACCEPT THAT AND GO WITH WHAT'S MOST PRACTICAL AND BEST FOR EVERYBODY.
WHAT? WAIT, WHAT DO YOU BEST FOR? EVERYBODY? WHO'S EVERYBODY? WELL, NUMBER ONE, THE, THE PERSON WHO IS DYING.
BUT SOMETIMES, LIKE, YOU CAN'T, YOU CAN'T, SOMETIMES YOU CAN'T GET EVERYTHING.
BUT IT'S IMPORTANT, YOU KNOW? SO EVERYBODY HERE, UM, THAT HAS SPOKEN UP HAS SPECIFIC THINGS THAT ARE IMPORTANT TO THEM, AND THAT'S VERY IMPORTANT TO CONVEY TO YOUR FAMILIES.
BECAUSE, UM, AT THE, AT A POINT, OH, YOU CAN WRITE THAT IN YOUR HEALTHCARE PROXY TOO, RIGHT? BECAUSE THAT'S A VERY BIG GUIDANCE TO OUR MEDICAL TEAMS AND OUR PALLIATIVE CARE AND GERIATRICS TEAMS. UH, THE OTHER THING IS THAT IN THE HOSPITAL, PEOPLE TALK ABOUT A FEEDING TUBE, ESPECIALLY IN THE SETTING OF ADVANCED DEMENTIA, TO SAY, OH, EITHER YOU'RE GONNA GET GET A FEEDING TUBE, OR YOU DON'T.
BUT THAT'S NOT TRUE, RIGHT? GETTING A FEEDING TUBE VERSUS NOTHING IS NOT AN ACCEPTABLE OPTION.
SO THE OPTION SHOULD BE GETTING A FEEDING TUBE OR ALLOW THEM TO EAT NATURALLY, CALL COMFORT FEEDING OR PLEASURE FEEDING, WHATEVER THEY CAN TOLERATE.
IT COULD BE LITTLE BITS OF ICE CREAM.
IT'S NOT GONNA BE A BIG PLATE, OKAY? BECAUSE WHEN WE THINK ABOUT EATING AMERICA'S ABOUT SUPERSIZE, RIGHT? IT'S SUPER, UH, HUGE, UH, UM, PORTIONS.
BUT WHEN IT COMES TO END OF LIFE, IT'S GONNA BE VERY SMALL.
IT'S GONNA BE TWO TEA SPOONFULS.
SO WHEN WE TALK ABOUT FOOD AND NUTRITION FOR END OF LIFE, IT'S GONNA BE QUALITY, IT'S GONNA BE SMALL AMOUNTS AND FAVORITE FOODS AND NO RESTRICTIONS, BUT IT IS POSSIBLE.
SO DID YOU, DID ANYBODY TALK ABOUT WHO YOU HAVE IN MIND FOR A HEALTHCARE PROXY? OKAY.
DOES ANYBODY WANNA SHARE? OKAY, WE KNOW THIS ONE.
I'LL JUST SHARE THAT FOR A LONG TIME, MY MOTHER HAS BEEN MY HEALTHCARE PROXY AND WE'VE DISCUSSED THAT.
I'M SWITCHING IT TO MY BROTHER, NOT BECAUSE SHE'S GOING ANYWHERE ANYTIME SOON.
SO SHE DOESN'T HAVE TO BE THE ONE, OR IF SHE'S NOT HERE, BUT SHE ALSO, I DON'T WANNA PUT THAT ON YOU.
I DON'T WANNA PUT THAT ON YOU IF SOMETHING HAPPENS TO ME WHILE YOU'RE STILL AROUND.
I, YOU COULD PUT BOTH OF US TOO.
SHE DOES SEEM TO BE YOU'RE, YOU'RE RIGHT.
AND IF I HAVE IT VERY CLEARLY ARTICULATED WHAT I WANT, 'CAUSE I THINK THAT'S ONE OF THE BIGGEST THINGS I TOOK AWAY FROM YOUR TALK IS THAT IDEA OF EVEN IF I HAVE MY HEALTHCARE PROXY, THAT IF I HAVEN'T COMMUNICATED IT TO EXACTLY WHAT I WANT, THEN THAT'S NOT ENOUGH.
SO, SO KNOWING THAT NOW, YEAH, SHE COULD BE PART OF MY HEALTHCARE PROXY TEAM.
SO LEGALLY IN NEW YORK STATE, ON THE PROXY FORM, YOU CAN PUT DOWN PRIMARY PROXY, WHICH IS THE PERSON THAT THE HOSPITAL WOULD CALL FIRST.
IF THE PRIMARY PROXY IS NOT AVAILABLE OR ACCESSIBLE OR DOESN'T WANNA BE INVOLVED, THEN YOU GO TO THE ALTERNATE.
AND PROXY FOR LARGE FAMILIES, UM, APPOINTING SOMEBODY AS PROXY IS NOT ABOUT LOVE.
OKAY? IT'S ABOUT ACCESSIBILITY AND PEOPLE WHO CAN HANDLE THE EMOTIONS AND WHO CAN SPEAK FOR YOU AND NOT, AND MAKE DECISIONS BASED ON YOUR WISHES, NOT THEIR WISHES.
OKAY? SO YOU CAN SAY THAT, OH, I'M APPOINTING SUCH AND SUCH, NOT BECAUSE I LOVE THEM MORE, WHATEVER.
IT'S BECAUSE THEY CAN STEP UP, YOU KNOW, THEY CAN HANDLE IT EMOTIONALLY AND THEY CAN FOLLOW MY WISHES.
ARE THERE PROFESSIONAL HEALTHCARE PROXIES? ARE THERE PROFESSIONAL HEALTHCARE PROXIES? THERE ARE SOME PEOPLE WHO HAVE SERVED AS PROXIES FOR MULTIPLE PEOPLE.
UM, THERE'S, THERE ARE DEATH DOULAS, YOU KNOW, THAT WAS LATER IN THE TALK.
BUT AS I PUBLISHED MY BOOK, I LEARNED ABOUT, THERE'S A WHOLE DEATH DOULA COMMUNITY.
SO THEY'RE ADVOCATES FOR, AND OF JUST LIKE BIRTH DOULAS, YOU KNOW, WHY SHOULD WE DISCRIMINATE, YOU KNOW, FOR END OF LIFE AS OPPOSED TO THE BEGINNING OF LIFE IN MY HOSPITAL, WHEN THE BABY IS BORN,
[01:15:01]
THEY PLAY THIS MUSIC, THE LULLABY, DA DA, IT IS VERY LOUD.SO NO MATTER WHATEVER YOU'RE DOING, YOU HAVE TO STOP 'CAUSE YOU CAN'T HEAR ANYTHING ELSE.
AND THEN, YOU KNOW, A BABY'S BORN, SO THAT'S REALLY GREAT.
BUT AT THE END OF LIFE, WE HAVE PATIENTS WHO DIE IN THE HOSPITAL, NO MUSIC, NO NOTHING.
YOU JUST LIKE HIDE IT, YOU KNOW, AFTER ALL THAT DRAMA.
AND THEN THEY GET TRANSFERRED TO THE MORGUE.
SO I HAVE PROPOSED TO HAVE MUSIC FOR, YOU KNOW, A PATIENT WHO DIES IN THE HOSPITAL THAT DIDN'T GO OVER BIG WITH OUR PRESIDENT.
ANYBODY ELSE? APPOINTING PROXY.
WERE YOU ABLE TO THINK OF A PERSON FOR PROXY POLLY? UM, SO WHEN I LOOKED AT MY, I'VE MY OLD ADVANCED DIRECTIVE OR MY OLD PROXY, I ONLY HAD ONE PERSON.
OKAY? AND AS I'VE GOTTEN OLDER, I REALIZED THAT MAYBE I NEED ELIZABETH, UM, THE WAY YOU WERE THINKING THAT MAYBE I NEED SOMEBODY YOUNGER.
AND SO THE ALTERNATE BECAME, THE DECISION ABOUT THE ALTERNATE BECAME ACTUALLY MUCH MORE IMPORTANT THAN I HAD THOUGHT 20 YEARS AGO.
SO, AND TO THINK ABOUT IT CAREFULLY, AND I DID HAVE SOME ISSUES ABOUT THIS SON OR THAT SON AND, AND FEELING A LITTLE AWKWARD SO THAT WE ALL HAD TO TALK ABOUT.
SO, UM, HAVING YOU COME AND DO THIS WAS VERY USEFUL PERSONALLY BECAUSE IT MADE ME REALLY THINK ABOUT THINGS LIKE, UM, YOU KNOW, THINK ABOUT THE ALTERNATE AND WHO THAT PERSON WOULD BE.
SO YOU'RE ALLOWED TO HAVE TWO PEOPLE.
YOU CAN HAVE A PRIMARY RIGHT? AND AN ALTERNATE.
THEY DON'T HAVE THE SAME POWER.
SO THE PRIMARY IS CONTACTED FIRST.
IF THE PRIMARY IS NOT ACCESSIBLE OR WILLING, THEN WE GO TO THE ALTERNATE.
UM, THE OTHER THING ABOUT HEALTHCARE PROXY IS WRITE DOWN SOME OF YOUR WISHES CLEARLY SO THAT THE PROXY CAN FOLLOW THEM.
MAKE A COPY FOR YOUR PROXY SO THEY ACTUALLY KNOW THAT THEY HAVE THIS JOB.
MAKE SURE WHEN YOU WRITE DOWN THEIR NAME, ALSO WRITE THEIR PHONE NUMBER.
THE ADDRESS IS OKAY, BUT PEOPLE ARE NOWADAYS, THEY LIVE ALL OVER.
BUT THE PHONE NUMBER IS CRITICAL SO THAT THE HOSPITAL OR THE DOCTOR CAN REACH THAT PERSON.
AND THEN PART OF MY BOOK ALSO TALKS ABOUT CELEBRATIONS.
SO I ENCOURAGE EVERYBODY TO FIND ANY EXCUSE TO CELEBRATE.
LIFE IS GREAT, RIGHT? AT THE END OF THE DAY, AFTER SEEING ALL THAT IN THE HOSPITAL, I GO HOME, I THINK ABOUT LIVING AND HOW SPECIAL IT IS NOT ABOUT DYING.
UM, AND ALSO, SO WHEN YOU'RE HAVING THIS, UM, PROXY DISCUSSION, YOU CAN HAVE A PROXY PARTY, RIGHT? WHY NOT? SO GATHER PEOPLE THAT YOU WANNA APPOINT US PROXIES OR HAVE MULTIPLE PEOPLE WHO WANNA DISCUSS IT TOGETHER.
AND YOU CAN HOST THE PROXY PARTY YES, YES.
SO AT YOUR TABLE, YOU ALSO HAVE THE LIGHTHEARTED GUIDE, WHICH IS, UM, FROM MY WEBSITE.
UH, AND IT'S ALSO A GOOD TOOL TO USE WHEN YOU'RE STARTING THESE CONVERSATIONS.
UM, I BELIEVE IN, YOU KNOW, GUIDED EXERCISES.
SO IN THIS, UH, LIGHTHEARTED GUIDE, UH, THE FIRST PART, SECTION ONE TALKS ABOUT IDENTIFYING YOUR WISHES AND VALUES, WHICH WE DID WHAT YOU NEED.
YOU NEED ANOTHER COPY? OH, WHAT IT LOOKS LIKE THIS.
I THINK YOU STARTED THAT EXERCISE, WHICH IS GOOD, BUT KEEP TALKING ABOUT IT.
GO HOME AND HAVE A PROXY PARTY.
UH, THE OTHER PART IS IDENTIFYING WAIT, PRE-CREATE YOUR PERFECT END OF LIFE DAY AND WHAT THAT MIGHT LOOK LIKE.
SO THAT COULD BE A LITTLE SCARY FOR SOME PEOPLE.
I WAS DOING A SESSION WITH MEDICAL STUDENTS, THIS IS SEVERAL YEARS AGO, AND WE WAS TALKING ABOUT THAT.
AND ONE MEDICAL STUDENT SAID, I'M NOT GONNA THINK ABOUT THAT, AND YOU CAN'T MAKE ME.
I SAID, WELL, JUST DO AN EXERCISE.
IF YOU DON'T WANNA DO IT, YOU DON'T HAVE TO DO IT.
UM, SO FOR THOSE OF YOU WHO ARE OPEN TO DOING IT, THINK ABOUT IT, WHAT'S IMPORTANT AND VISUALIZE IT, RIGHT? BECAUSE AT SOME POINT THAT MAY COME.
AND THEN, AND THEN THE OTHER WORKSHEET IS ADVANCED DIRECTIVES, ICEBREAKER QUESTIONS.
KIND OF FUNNY, INTERESTING WAYS.
MAYBE YOU CAN USE SOME OF THE EXAMPLES THAT I MENTIONED TODAY TO KIND OF START THAT CONVERSATION.
WE ACTUALLY DID THE ROLE PLAY SCENARIOS.
I THINK THAT WORKED OUT PRETTY WELL.
SO TAKE A LOOK AT THOSE, UH, LIGHTHEARTED GUIDE QUESTIONS.
AND THEN THE OTHER HANDOUT THAT WE HAVE IS THE ABBREVIATED FIVE WISHES, UH, WHICH IS A FORM THAT IS, UH, RECOGNIZED IN MANY STATES.
I THINK AT LEAST 30 OR 40 STATES IN THE US.
AND IT GOES THROUGH, UH, QUESTIONS ABOUT A HEALTHCARE PROXY, WHO YOU WOULD WANT TO SPEAK FOR YOU IN CASE YOU CAN'T, WHICH WE TALKED ABOUT HERE EXTENSIVELY.
AND THEN QUESTION TWO, WISH TWO IS ABOUT MY WISH FOR WHAT KIND OF LIFE SUPPORT TREATMENT I WANT OR DON'T WANT.
[01:20:01]
TO GET INTO ALL OF THOSE SPECIFIC THINGS, BUT I THINK THAT THE MOST IMPORTANT THING IS THE PISTACHIO AND THE CHOCOLATE ICE CREAM SCENARIO.UH, YOU KNOW, AND THE BEING AT HOME.
BECAUSE IF I KNOW THOSE ARE THE GUIDING WISHES, THEN I KNOW AND I CAN MAKE MEDICAL RECOMMENDATIONS ABOUT WHAT THAT PERSON MIGHT BENEFIT FROM OR NOT.
AND THEN WISH THREE IS ABOUT MY WISH OF HOW COMFORTABLE I WANNA BE.
SOME PEOPLE ARE AFRAID OF PAIN MEDICATIONS BECAUSE THEY THINK IT'S GONNA SPEED UP THE DYING PROCESS.
SOME PEOPLE WANT IT, SOME FAMILIES REQUEST IT.
BUT FROM A PRESCRIBING PERSPECTIVE, WE GIVE THE LOWEST DOSES THAT CAN KEEP THE PAIN OR THE SYMPTOM UNDER CONTROL, NOT TO LIKE OVERDO IT.
OUR GOAL IS COMFORT, NOT ENDING THE LIFE, RIGHT? AND THEN WISH FOUR IS MY WISH FOR HOW I WANT PEOPLE TO TREAT ME, WHICH IS ALSO SOMETHING REALLY GOOD TO THINK ABOUT.
UM, YOU KNOW, SOME PEOPLE WANNA BE ALONE.
SOME PEOPLE WANNA BE WITH FAMILY, SOME PEOPLE WANNA HAVE PETS, SOME PEOPLE HATE PETS.
UM, AND THEN WISH FIVE IS, UM, WHAT I WISH MY LOVED ONES TO KNOW.
AND A LOT OF PEOPLE SAVE THESE VERY IMPORTANT THINGS, UH, FOR THE LAST MINUTE, AND THEN THEY RUN OUT OF TIME.
SO IRA BAK ACTUALLY ANOTHER PHYSICIAN, HE'S LIKE THE FATHER OF PALLIATIVE CARE.
HE WROTE A GREAT BOOK CALLED THE FOUR THINGS THAT MATTER MOST IS THAT CON TO CONVEY THE IMPORTANT THINGS LIKE, I LOVE YOU AND FORGIVE ME FOR THINGS, WRONG THINGS THAT I HAVE DONE.
I FORGIVE YOU FOR THINGS YOU KNOW THAT WERE SAID IN THE PAST.
UM, THANK YOU FOR X, Y, AND Z THAT WE WERE ABLE TO SHARE TOGETHER.
AND THE LAST THING, WHICH IS HARD TO SAY, IS GOODBYE.
SO A LOT OF PEOPLE SUBSTITUTE THAT.
SOME PEOPLE, YOU KNOW, WHEN IT'S REALLY GOODBYE, THEY SAY GOODBYE.
BUT ALSO TO LET FAMILY MEMBERS KNOW THAT IT'S OKAY, I'LL BE OKAY EVEN AFTER YOU LEAVE, I'LL BE OKAY.
AND THAT'S A RELIEF FOR A LOT OF PATIENTS BECAUSE THEY CARE ABOUT THEIR LOVED ONES AND THEY WORRY ABOUT THEM.
I THINK ONE MORE THING THAT'S REALLY IMPORTANT WITH SOMEONE WHOM YOU'VE LOVED, WHO IS DYING TO LET THEM KNOW THAT IT'S OKAY FOR THEM TO GO AND YOU REALLY HAVE TO SAY IT OUT LOUD.
VERY IMPORTANT THAT IT'S OKAY FOR THEM TO GO, I'LL BE OKAY.
YOU DON'T HAVE TO WORRY ABOUT ME.
AND IN ASKING PEOPLE ONE OF THE PEER SUPPORT THINGS, UM, 'CAUSE A LOT OF TIMES WE ASK PEOPLE, ARE YOU OKAY? ARE YOU OKAY? AND THEY SAY, I'M OKAY, BUT THEY'RE REALLY NOT OKAY.
SO MY NEWEST THING IS, IT'S OKAY TO NOT BE OKAY RIGHT NOW.
IT'S ABSOLUTELY FINE TO NOT BE OKAY, BECAUSE SOMETIMES THINGS REALLY SUCK AND YOU DON'T HAVE TO PRETEND IT'S OKAY.
ANY OTHER COMMENTS? PAT? H OKAY.
WELL, SOME PEOPLE, UM, YOU KNOW, UNDER CERTAIN CIRCUMSTANCES THEY WANT AGGRESSIVE TREATMENT AND UNDER THEN, UNDER OTHER CIRCUMSTANCES, THEY DON'T WANT IT.
AND SO MAYBE YOU COULD SAY A LITTLE BIT ABOUT LIKE WHAT KIND OF LANGUAGE DO PEOPLE USE? I, I THINK IN MY HEALTHCARE PROXY, UM, WELL, PEOPLE VARY, BUT SOME PEOPLE SAY, IF I CAN'T REC IF I DON'T RECOGNIZE MY FAMILY, THEN LET ME GO.
UM, BUT I THINK IN MY PROXY I SAID, WELL, EVEN IF I CAN'T RECOGNIZE MY FAMILY, BUT IF I LOOK LIKE I'M ENJOYING, YOU KNOW, WHAT A WHAT, YOU CAN STILL DO THIS, BUT DON'T DO THAT.
SO, YOU KNOW, IT'S, IT'S SORT OF COMPLICATED.
LIKE HOW DO, HOW DOES THE FAMILY UNDERSTAND WHEN YOU WOULD WANT AGGRESSIVE TREATMENT AND WHEN YOU WOULDN'T? WHAT, WHAT KIND OF LANGUAGE WOULD YOU USE TO, TO HELP THEM UNDERSTAND THAT? I FEEL LIKE I'M READING MY, I DON'T KNOW, THAT'S VERY HARD.
UM, AND I THINK THAT GOES BACK TO THE VALUE VERSUS TIME SITUATION.
AND THEN, UH, THE OTHER WAY I GUESS TO THINK ABOUT IT IS, WHAT IS A LIFE THAT, UM, OR AN EXISTENCE THAT I WOULD NOT WANT TO PROLONG? SO FOR MYSELF, AT SOME POINT I REALIZE THAT IF I DON'T HAVE MY MIND TO BE ABLE TO MAKE DECISIONS AND I HAVE A PRESSURE ULCER, WHICH IS A BAD SORE, THAT'S NOT HEALING, THEN I'M DONE.
BECAUSE THAT MEANS PEOPLE AROUND ME DON'T HAVE THE ABILITY TO CARE FOR ME NOR CARE TO TAKE CARE OF ME.
UM, I DON'T KNOW IF YOU NOTICED, I WAS SUPPOSED TO GET THE MICROPHONE BEFORE, BUT MY WIFE TOOK IT AWAY FROM ME, WHICH IS, WHICH IS OKAY.
JUST, JUST ONE WORD OF CAUTION.
I THINK, UM, MANY, UM, UM, PATIENTS WHO ARE NEAR THE END OF LIFE, UM, WANT TO DISCUSS IT WITH THEIR DOCTORS, EVEN IF THEY'VE DISCUSSED IT WITH THEIR FAMILY OR THEIR FRIENDS, SOMEONE IS THEIR HEALTHCARE PROXY.
UM, IT'S UNUSUAL, UM, IN TODAY'S MEDICAL SETTINGS THAT A PHYSICIAN WILL JUST STAY AND TALK 20 OR 25 MINUTES ABOUT THE ISSUE THAT YOU'RE BRINGING UP.
[01:25:01]
NUMBER ONE.AND IT'S IMPORTANT TO KNOW, THEREFORE THAT, THAT THE PEOPLE YOU TRUST KNOW YOUR PROXY AND CAN TALK WITH THE STAFF BESIDES THE PHYSICIAN.
THE OTHER THING IS THE PHYSICIAN TODAY IN MANY HOSPITALS IS NOT THE PHYSICIAN YOU SEE IN THE OFFICE, UM, OR IN THE CLINIC.
IT'S BASICALLY THEY HAVE HOSPITALISTS, PEOPLE WHO WORK IN THE HOSPITAL, AND THEN PEOPLE WHO YOU'VE SEEN IN THE CLINIC, A DOCTOR WHO MAY KNOW YOU FOR 30 YEARS, HASN'T BEEN IN THE HOSPITAL FOR 20 YEARS BECAUSE OF THE WAY THAT ME MEDICINE HAS BEEN DIVIDED.
UM, BUT YOU, I, I THINK THE OTHER, ONE OTHER IMPORTANT THING HERE IS THAT FAMILY MEMBERS, UM, OFTEN HAVE DIFFERENT OPINIONS ABOUT WHAT TO DO.
AND UH, IT'S IMPORTANT I THINK, TO TRY TO DESIGNATE ONE MEMBER OF THE FAMILY WHO WILL COMMUNICATE WITH THE PHYSICIAN INSTEAD OF I THINK PHYSICIAN GETTING FOUR OR FIVE CALLS, UH, FROM DIFFERENT FAMILY MEMBERS IN DIFFERENT PARTS OF THE COUNTRY.
AND IT'S GOOD THEN THAT THE FAMILY CAN UNDERSTAND WHAT IT IS THAT THEIR LOVED ONE WANTS.
YOU BRING UP SEVERAL IMPORTANT THINGS AND THERE'S A CHAPTER IN MY BOOK WHERE I ACTUALLY TALK ABOUT LIKE FAMILY MEETINGS AND DELEGATING.
SO SOME FAMILIES ARE QUITE SMALL, SO ONE PERSON MAY END UP DOING EVERYTHING, BUT IF THERE ARE QUITE A FEW CHILDREN OR PEOPLE WHO WANNA BE INVOLVED, THEN IT'S TIME TO HAVE A FAMILY MEETING AND SAY, LOOK, YOU'RE A LAWYER OR YOU ARE GOOD WITH NUMBERS, YOU TAKE CARE OF THAT, RIGHT? YOU ARE GOOD MEDICAL STUFF.
SO YOU GO TO THE MEDICAL APPOINTMENTS AND YOU TAKE CARE OF THAT.
YOU ARE GOOD WITH, YOU KNOW, HANDY WORK AND CONTRACTING.
YOU BILL THAT, YOU KNOW, HANDICAP ACCESSIBLE, UH, PATHWAY.
SO TO DELEGATE AND NOT TO PUT EVERYTHING ON ONE PERSON BECAUSE THAT CAN BE A LOT.
SO, UM, MY MOTHER-IN-LAW ACTUALLY PASSED AWAY RIGHT AFTER THE COVID PANDEMIC, UH, DIED DOWN.
AND BECAUSE ME AND MY HUSBAND WERE BOTH DOCTORS, WE REALLY TOOK CARE OF A LOT OF THE MEDICAL STUFF.
AND HER OTHER SON WAS VERY AVERSE TO EMOTIONS AND IT GOT SO EMOTIONAL THAT HE JUST STOPPED SHOWING UP.
UM, BUT HE'S GOOD WITH NUMBERS, SO HE'S TAKING CARE OF THE ESTATE STUFF
SO WE KIND OF JUST, YOU KNOW, JUST TOOK WHATEVER WE COULD DO.
UM, AND MY HUSBAND AND I, WE DON'T HAVE THE TIME, NOR ARE WE GOOD WITH NUMBERS.
SO WE'RE VERY HAPPY THAT THEY TAKE OVER THAT.
UM, AS FAR AS DOCTOR'S TIMES, IT'S TRUE, I'M ACTUALLY DOING A RESEARCH WITH PRIMARY CARE PHYSICIANS ABOUT STARTING GOALS OF CARE AND ADVANCED CARE PLANNING DISCUSSIONS.
AND SOME OF THE PRE-WORK THAT I DID OUT OF LIKE TALKING TO 20 PRIMARY CARE PHYSICIANS, UH, ONE OF THEM WOULD LIKE TO TAKE THE COURSE AND LEARN MORE SKILLS ABOUT THIS.
AND THE OTHER 19 WERE LIKE, DEAD'S SILENT.
UH, SO, AND THEN SOME OF THE COMMENTS AFTER THAT WAS, WELL, THESE CRISES HAPPEN IN THE HOSPITAL, SO LET THE HOSPITAL PEOPLE TAKE CARE OF IT.
AND THEN THE ED PHYSICIANS AND THE HOSPITAL DOCTORS TELL ME, WELL, WHY DIDN'T THE PRIMARY CARE DOCTORS, I MEAN, DON'T THEY HAVE THE RELATIONSHIP WITH THE PATIENT? SO IT'S KIND OF LIKE, WHOSE JOB IS IT? BUT I THINK IT'S EVERYONE'S JOB.
AND THAT'S ANOTHER REASON WHY I WROTE THE BOOK, IS THAT WE HAVE TO TAKE CONTROL BECAUSE WE CAN'T REALLY TRUST THAT WHOEVER DOCTORS WE SEE ARE GONNA START THAT CONVERSATION OR WANT THAT CONVERSATION OR HAVE THE TIME TO HAVE THAT CONVERSATION.
THERE'S A LOT OF PRESSURE IN THE MEDICAL VISITS, SO WHOEVER THINKS OF IT PRETTY MUCH JUST HAS TO DO IT.
AND WE HAVE TO EDUCATE OURSELVES.
I USED TO THINK KNOWLEDGE IS POWER.
KNOWLEDGE IS POTENTIAL, RIGHT? ACTION IS POWER.
SO HAVING THE KNOWLEDGE IS GREAT IF YOU DON'T PUT IT INTO ACTION, IT'S JUST PIE IN THE SKY.
SO IF YOU GET A PROXY GOING, IF YOU, IF IT'S THE TIME TO CHANGE YOUR PROXY AND UPDATE IT OR ADD SOME INFORMATION ON IT, THIS IS THE TIME TO DO IT.
IF YOU HAVE MULTIPLE PROXIES, THE ONE WITH THE LATEST DATE IS THE EFFECTIVE ONE.
SO IF YOU HAVE ONE FROM 2005 AND 2010 AND 2025 TO 2025 IS THE ACTIVE ONE.
WELL, OUR TIME IS A LITTLE BIT OVER.
I THINK WE'RE GONNA HAVE TO, TO CALL IT A DAY FOR NOW.
UM, I HOPE YOU FOUND LIKE I DID THAT THIS IS TREMENDOUSLY, UM, HELPFUL, BUT ALSO I HOPE THAT IT KIND OF INSPIRES YOU TO DIG A LITTLE DEEPER, YOU KNOW, TO HAVE THESE CONVERSATIONS, TO THINK ABOUT WHAT YOU NEED TO DO.
CYNTHIA'S BOOK IS FOR SALE IN THE BACK.
I MEAN, THERE'S, YOU KNOW, SHE SAID THERE'S A CHAPTER ON SEX AT THE END OF LIFE,
I MEAN, THERE'S A LOT OF VERY WARM AND FUNNY STORIES THAT REALLY CONVEY VERY IMPORTANT INFORMATION AS WELL.
UM, SO THANK YOU ALL FOR COMING.
IT'S BEEN A PLEASURE, CYNTHIA.
AND I HOPE THIS IS ONLY THE BEGINNING OF, YOU KNOW, SORT OF A PROCESS FOR YOU, UM, TO PURSUE.
I APPRECIATE EVERYONE'S INPUT AND SPEAKING UP ABOUT, UH, YOUR CONVERSATION.
AND THANK YOU AGAIN, PAT AND HOLLY AND ANN AND IRIS AND EVERYONE.