Physician & Author Sunita Puri on End of Life Care

> FOR MOST DOCTORS, THE MAIN GOAL IS TO PRESERVE LIFE, TO GET PEOPLE BACK ON THEIR FEET AND TO DO NO HARM, BUT HOW DOES THIS APPROACH IMPACT PATIENTS' PERSONAL DIGNITY OR HOW WE THINK ABOUT DEATH?

DR. SUNITA PURI RUNS THE PALLIATIVE MEDICINE AND SUPPORTIVE CARE SERVICES AT THE UNIVERSITY OF SOUTHERN HER LIFE'S WORK IS IN HELPING PATIENTS COME TO TERMS WITH DYING, PROVIDING MEDICAL AND SPIRITUAL SUPPORT AS THEY FACE THEIR FINAL JOURNEY.

AND SHE SAT DOWN WITH OUR ELYSIA MENENDEZ TO TALK ABOUT HER NEW BOOK, 'THAT GOOD NIGHT,' AND HOW HER PERSONAL EXPERIENCES HAVEK.

DR. PURI, THANK YOU SO MUCH FOR BEING HERE WITH US.

THANK YOU SO MUCH FOR HAVING ME.

WHY WAS IT IMPORTANT TO YOU TO WRITE THIS BOOK?

I THINK THIS BOOK WAS ALWAYS IN ME.

MMM-HMM.

AND I TWO MAIN STRANDS OF THE BOOK ARE WHAT IT WAS LIKE TO GROW UP WITH MY PARENTS, WHO ARE BOTH IMMIGRANTS FROM INDIA, AND WHO GREW UP IN POVERTY, AND THAT POVERTY REALLY INSTILLED IN THEM A VERY DEEP REVERENCE FOR THE DIVINE AND FOR ALL THINGS SPIRITUAL.

THAT WAS SOMETHING THEY PASSED ON TO MY BROTHER AND I.

SO I GREW UP WITH THIS OUTLOOK ON LIFE AND ON MORTALITY AS LIFE IS TEMPORARY AND WE ARE ALL IMPERMANENT AND THEREFORE SO IS OUR SUFFERING.

AND I FOLLOWED MY MOTHER INTO MEDICINE BECAUSE I WANTED TO BE EXACTLY LIKE HER, BUT I CAME INTO A PROFESSION THAT HAD A VERY DIFFERENT LOOK AT MORTALITY AND A VERY DIFFERENT LOOK AT ITS OWN PURPOSE IN KEEPING PEOPLEIV.

AND I WROTE THIS BOOK TO RECONCILE WHERE I CAME FROM, HOW IT LED ME TO THIS PROFESSION AND HOW I MADE THE PROFESSION MY OWN, BUT I ALSO VERY MUCH WROTE THIS BOOK KIND OF IN HONOR -- TO HONOR THE PATIENTS AND THE FAMILIES THAT I'VE HAD THE PRIVILEGE OF TAKING CARE OF BECAUSE THEIR STORIES I BELIEVE CAN HELP SO MANY OTHERS WHO ARE IN A SIMILAR POSITION OF FACING MORTALITY AND DYING AND NOT KNOWING HOW TO NAVIGATE THAT, AND IT'S ONE OF THE LONELIEST THINGS I THINK PATIENTS AND FAMILIES FACE.

YOUR FIELD IS A RELATIVELY NEW FIELD, RIGHT?

YES.

SO WHEN YOU GO INTO A ROOM AND YOU DESCRIBE TO A PATIENT WHAT PALLIATIVE CARE IS, HOW DO YOU EXPLAIN IT?

SO THE VERY FIRST THING I DO WHEN I TELL SOMEONE I'M FROM THE PALLIATIVE CARE TEAM IS TO SAY, IT'S TOTALLY OKAY IF YOU HAVE NOT HEARD OF THIS FIELD.

SOMETIMES I'LL EVEN JOKE AND SAY MY PARENTS DON'T EVEN REALLY TOTALLY UNDERSTAND WHAT I DO.

JUST TO KIND OF PUT THAT OUT THERE.

YEAH.

BECAUSE IT'S A WORD THAT TONGUE. ROLL EASILY OFF THE

MMM-HMM.

MANY PEOPLE HAVE NOT HEARD OF IT.

AND SO IT INSPIRES FEAR.

AND WHAT I TRY TO TELL PEOPLE, REALLY MY JOB IS TO HELP YOU ADDRESS THE MANY WAYS THAT YOU MIGHT BE UNCOMFORTABLE.

SOMETIMES THAT'S PHYSICAL SUFFERING FROM YOUR DISEASE OR FROM THE TREATMENTS THAT WE'RE PROVIDING THAT CAN MAKE YOU FEEL REALLY BAD.

AND SOMETIMES THAT MEANS THAT YOU AND I JUST GET TO HAVE A CONVERSATION ABOUT WHAT'S GOING ON FOR YOU MEDICALLY, WHAT'S MEANINGFUL TO YOU IN YOUR LIFE AS A HUMAN BEING AND HOW WE CAN CRAFT THE BEST PLAN MEDICALLY TO SERVE WHAT'S MOST IMPORTANT TO YOU.

I WAS STRUCK BY HOW ALMOST UNIVERSALLY EACH OF THESE CONVERSATIONS BEGINS WITH THE FAMILY OR THE PATIENT WANTING TO REJECT THE PREMISE OF THE -- WANTING TO MAKE, RETURN TO SURVIVAL AS THE PREMISE.

WHAT DO I HAVE TO DO IN ORDER TO SURVIVE?

WHAT DOES THAT TELL YOU ABOUT THE STATE OF MEDICINE?

SO WE ARE ACCULTURATED AS DOCTORS TO MAINTAIN LIFE AT ALL COSTS, SOMETIMES AT THE COST OF DIGNITY.

AND I THINK WESTERN MEDICINE HAS BEEN VERY FOCUSED ON EXTENDING SURVIVAL.

IF YOU LOOK AT OUTCOMES THAT WE LOOK AT IN MEDICAL JOURNALS, WE LOOK AT THINGS LIKE SURVIVAL BENEFIT.

THAT IS DISTINCT FROM QUALITY OF

RIGHT.FIT.

WHICH WE'RE STARTING TO STUDY MORE, BUT IT IS ENGRAINED IN US TO PROLONG SURVIVAL AND WE DON'T KNOW WHAT TO DO WITH THE FACT THAT WE WILL NOT HELP PATIENTSV.

AND ACKNOWLEDGING THAT IN A REAL MEANINGFUL WAY IS VERY DIFFICULT BECAUSE IT'S NOT PART OF OUR TRAINING, AND I WOULD SAY IT'S NOT WHAT MANY PATIENTS AND FAMILIES EXPECT FROM US.

NO, I MEAN, I EVEN AS A NON DOCTOR THINK ABOUT THE PORTRAYALS OF DOCTORS ON 'E.R.'

OR 'GREY'S ANATOMY' THE PERSON WHO SAVES THE LIFE IS A HERO AND NOT A FAILURE.

YEP.

IT'S FUNNY, I DO A LOT OF TEACHING FOR THE MEDICAL STUDENTS AND I'LL SOMETIMES REFERENCE THOSE SHOWS AND SAYLYO MEDICINE MAYBE WANTING TO EMULATE WHAT YOU SEE ON TV.

WE'RE HAMMERED WITH THAT MESSAGE OF THIS IS WHAT A REAL DOCTOR IS, BUT I WANT TO SHIFT THAT PERSPECTIVE A BIT AND HELP YOU UNDERSTAND THAT A REAL DOCTOR IS SOMEONE WHO WILL WALK WITH THEIR PATIENT THROUGH EVERYTHING, INCLUDING THE FINAL STAGES OF LIFE, BECAUSE THERE IS SO MUCH IN MEDICINE THAT WE CANNOT CURE.

MOST ORGAN FAILURE LIKE HEART FAILURE, LIVER FAILURE, THE FAILURE OF LUNGS, THOSE ARE NOT THINGS THAT WE CAN REALLY TAKE AWAY FROM PEOPLE.

WE CAN MANAGE THEM SYMPTOM ATICALLY AND HELP THEM TO FEEL WELL AND ENJOY THEIR LIVES, BUT PART OF YOUR RESPONSIBILITY IS GOING TO BE OWNING THE RESPONSIBILITY TO TALK TO THEM ABOUT WHAT IT MEANS AS ORGAN FAILURE PROGRESSES.

WHAT IS -- WHAT IS MOST IMPORTANT TO THEM IF THEIR LIFE IS NOT AS LONG AS WE -- AS THEY WOULD LIKE IT TO BE?

AND HOW DO YOU LEARN TO TELL WHEN A LIFESPAN IS SHORTENING?

WHICH IS ALSO SOMETHING WE DON'T REALLY LEARN MUCH ABOUT IN MEDICAL SCHOOL.

AND THEN YOU GO INTO YOUR RESIDENCY TRAINING AND MORTALITY SLAPS YOU IN THE FACE.

AND YOU DON'T HAVE THE LANGUAGE OR THE TOOLS TO NAVIGATE THAT.

AND I HAVE A LOT OF COMPASSION FOR MY COLLEAGUES AND FOR MY EARLIER SELF IN MY TRAINING WHEN I MADE A LOT OF MISTAKES AROUND AND DID PROCEDURES AND GAVE MEDICATIONS TO PATIENTS BECAUSE I COULD BUT NOT NECESSARILY BECAUSE THAT'S WHAT I SHOULD HAVE DONE.

AND I KNOW THAT I PROLONGED SUFFERING FOR PATIENTS IN THE PAST.

AND IT WAS THE GRAVITY OF THOSE EXPERIENCES AND MY OWN REFLECTION ON THEM THAT REALLY LED ME TO RECONSIDER HOW I COULD DOCTOR BETTER, HOW I COULD DOCTOR DIFFERENTLY.

SOME OF THAT CAME DOWN TO THE SIMPLEST TOOL WE ALL HAVE, LANGUAGE.

THERE IS A PASSAGE FROM THE BOOK I WOULD LIKE YOU TO READ, AND IT'S ABOUT A PATIENT NAMED DAVE.

DAVE, UNFORTUNATELY YOUR EMP SEEMA IS GOING TO CONTINUE TO GET WORSE UNTIL IT TAKES YOUR LIFE AT SOME POINT.

I KNOW THAT IS DIFFICULT TO HEAR.

IT'S DIFFICULT FOR ME TO SAY.

BUT I HAVE TO TELL YOU THIS BECAUSE IT'S IMPORTANT THAT WE TALK ABOUT WHAT YOU WANT FOR YOURSELF AS YOU GET SICKER.

I HELD MY BREATH HOPING THAT HE WOULDN'T SHUT ME OUT.

HE NODDED.

YEAH, DOC, I KNOW.

I KNOW YOU'RE RIGHT.

TIME YET, YOU KNOW? SEEM LIKE MY BEFORE RESIDENCY AND FELLOWSHIP, WHEN I PICTURED A DYING PATIENT, I'D IMAGINE SOMEONE COMATOSE LYING IN A BED FULLY DEPENDENT ON OTHERS FOR CARE.

BUT DYING CAN BE A SLOW UNFOLDING RATHER THAN A SUDDEN A DYING PERSON MIGHT STILL BE ABLE TO WALK, TALK AND GO ABOUT THEIR LIVES, EVEN WHEN LIVING WITH A TERMINAL ILLNESS.

THIS WAS WHY IT HAD BEEN HARD FOR ME TO ACCEPT THAT MYDYING.

SHE WAS STILL IN HER RIGHT MIND.

STILL MOVING AROUND MY UNCLE'S FLAT.

STILL ABLE TO EAT AND INTERACTW.

DAVE PROBABLY AND UNDERSTANDABLY SAW HIMSELF THE SAME WAY.

MANAGING TO LIVE, NOT INCREMENTALLY DYING.

HOW UNIVERSAL IS THAT UNDERSTANDING AND HOW MUCH DOES IT AFFECT THE WAY WE THEN HAVE SUBSEQUENT CONVERSATIONS ABOUT THE DECISIONS THAT WE MAKE?

SO, THIS PICTURE THAT WE HAVE OF DEATH AND DYING IN OUR COUNTRY IS VERY MUCH THE PICTURE I HAD WHEN I WAS A YOUNG PERSON, WHEN I WAS A RESIDENT BEFORE MY GRANDMOTHER DIED.

WE THINK THAT DYING LOOKS LIKE BEING IN A HOSPITAL BED UNABLE TO INTERACT, UNABLE TO SPEAK.

AND SO WE DELAY A LOT OF CONVERSATIONS ABOUT WHAT PATIENTS WANT FOR THEMSELVES AS THE END OF THEIR LIVES APPROACH BECAUSE THEY'RE STILL WALKING AND TALKING AND THEY'RE IN THEIR RIGHT MIND AND THEY'RE MOVING ABOUT MAYBE A LITTLE MORE SLOWLY BUT MUCH AS THEY DID BEFORE.

AND SO IN THE MIND OF THE PATIENT AND THE FAMILY AND THE PHYSICIANS, THEY MAY NOT LOOK LIKE THEY'RE DYING.

AND THAT -- THAT PICTURE THAT WE HAVE IS INACCURATE.

BECAUSE SO MANY PEOPLE ARE STILL ACTUALLY LIVING QUITE FULLY AS THEY'RE DYING.

AND UNTIL WE CAN HAVE A BETTER, CLEARER UNDERSTANDING THAT DYING MAY NOT LOOK ALWAYS LIKE SOMEONE IN A HOSPITAL BED DEPENDENT ON OTHERS AND ON MACHINES, THEN WE'RE NOT GOING TO BE ABLE TO ADVANCE OUR CONVERSATIONS TO AN EARLIER POINT IN ILLNESS.

AND THAT'S REALLY WHEN WE SHOULD BE HAVING THEM, BEFORE THE PATIENT, THE PERSON IS IN A BAD COMATOSE, UNABLE TO TALK.

IT TOOK YOU AS A MEDICAL PRACTITIONER A VERY LONG TIME TO LEARN HOW TO HAVE THESE CONVERSATIONS.

YEAH.

HOW DO WE AS LAYPEOPLE LEARN HOW TO HAVE THEM PRE-EMPTIVELY.

YEAH.

BEFORE THEY'RE A CONVERSATION THAT IS FORCED.

YEAH.

WELL, ONE OF THE HARDEST BUT NOT MEANINGFUL SECTIONS I WROTE IN THE BOOK WAS ABOUT MY OWN ATTEMPT TO TALK TO MY PARENTS.

AND TO SAY THAT THAT WAS DIFFICULT IS A HUGE UNDERSTATEMENT.

BECAUSE -- AND I REALLY -- I WONDERED WHY I HAD SO MUCH DIFFICULTY WITH IT, GIVEN THEIR OWN VIEWS ON MORTALITY AND IMPERMANENCE AND GIVEN THAT I HAVE THESE CONVERSATIONS EVERY SINGLE DAY.

ONE THING THAT I FIND REALLY HELPED ME WAS TO KNOW THAT IF I DIDN'T ASK THEM I WOULDN'T KNOW WHAT THEY WOULD WANT, AND I NEEDING TO GUESS.OSITION OF WHICH I THINK IS ONE OF THE MOST STRESSFUL THINGS THAT PATIENTS AND FAMILIES EXPERIENCE, IS JUST THE NOT KNOWING.

RIGHT.

AND THERE HAVE BEEN SO MANY MEETINGS I'VE BEEN IN WHERE SOMEBODY HAS BECOME CRITICALLY ILL.

SOMETIMES WE COULD SEE IT COMING AND SOMETIMES WE COULDN'T.

BUT THEIR LOVED ONES ALWAYS TELL ME, I WISH THAT I HAD TALKED TO MY MOTHER OR MY FATHER OR MY PARTNER BEFOREHAND SO I WOULD KNOW WHAT TO DO FOR THEM.

AND I THINK IF WE THINK ABOUT IT JUST AS ALMOST LIKE CRISIS PLANNING, JUST LIKE WE PLAN FOR UNEXPECTED THINGS ALL THE TIME, WE HAVE CAR INSURANCE, FOR EXAMPLE.

WE HAVE HOME INSURANCE.

AND HAVING THIS CONVERSATION I THINK IS THE BEST INSURANCE AGAINST HAVING THINGS HAPPEN THAT WILL CAUSE YOU TREMENDOUS SUFFERING.

I ALSO THINK THAT PART OF LIVING A GOOD LIFE IS DYING A GOOD DEATH.

AND SO IT'S A GIFT WE GIVE OUR LOVED ONES TO FIND THAT COURAGE TO SAY, THIS IS REALLY HARD, AND I WISH THAT WE DIDN'T HAVE TO TALK ABOUT THIS, BUT I WANT TO BE SURE I'M THE BEST SPOKESPERSON FOR YOU THAT I CAN BE.

IF YOU CAN'T TALK TO ME OR YOUR DOCTORS YOURSELF.

HOW DO THE CONTOURS OF THIS CONVERSATION CHANGE WHEN IT IS A PARENT MAKING THESE DECISIONS

I'M SO GLAD YOU ASKED THAT QUESTION BECAUSE I THINK THE IMAGE OF PALLIATIVE CARE IN OUR COUNTRY IS VERY MUCH JUST FOR ADULTS.

THERE IS PEDIATRIC PALLIATIVE CARE AND THERE IS -- I SEE A TREMENDOUS NUMBER OF PATIENTS WHO ARE ACTUALLY IN THEIR 20s AND 30s AND 40s AND THEY'RE DECISION MAKERS OR SOME OF THEIR DECISION MAKERS ARE THEIR PARENTS.

AND I THINK THAT FOR PARENTS THE CHALLENGE IS -- THE DEEP EMOTIONAL CHALLENGE IS I SHOULDN'T NEED TO BURY MY CHILD BEFORE ME.

MY CHILD SHOULD BE BURYING ME.

AND I THINK WHAT I HAVE TO DO IN THOSE CONVERSATIONS IS HELP THEM TO COME TO AN UNDERSTANDING THAT THEIR CHILD IS MAYBE 35 YEARS OLD BUT THEIR CHILD'S BODY AND THEIR CHILD'S ORGANS ARE ACTING LIKE THEY'RE 85 AND THAT THE BODY IS REALLY AT THE VERY END OF ITS EXISTENCE.

AS HARD AS THAT IS TO RECONCILE.

AND I THINK GETTING A PARENT TO ACCEPT THAT IS A PROCESS THAT WILL TAKE PLACE LONG AFTER THE CHILD PASSES AWAY.

I CAN'T IMAGINE BEING IN THAT POSITION, BUT I DO SEE THE RESILIENCE OF PARENTS WHOSE CHILDREN I HAVE TAKEN CARE OF, AND IT IS SOMETHING TO SIT IN AWE AND ADMIRE.

DR. PURI, THANK YOU SO MUCH.

THANK YOU SO MUCH FOR HAVING ME.

IT'S AN HONOR.