>> WELCOME TO DAY TWO OF THE
NICHD STATE OF THE SCIENCE
PEDIATRIC PALLIATIVE CARE
CONFERENCE.
I'M TESSIE OCTOBER THE
PALLIATIVE CARE AND PHYSICIAN
WHO SERVES AS THE MEDICAL
OFFICER AT NICHD WITHIN THE
PEDIATRIC TRAUMA AND CRITICAL
ILLNESS BRANCH.
WE HAVE AN EXCITING LINEUP OF
PRESENTATIONS AND DISCUSSIONS.
I'M EXCITED YOU'RE WITH US
TODAY.
THIS IS AN INTERACTIVE SECTION
WHERE YOUR VOICE WILL BE
IMPORTANT FOR GUIDING THE
DISCUSSION.
SEND QUESTIONS BY PRESSING THE
LIVE FEEDBACK BUTTON ON THE
LINK.
THERE WILL BE A MODERATOR-RUN
PANEL DISCUSSION AND Q&A AFTER
EACH SESSION AND WE WILL GATHER
YOUR QUESTIONS AS YOU SEND THEM
IN AND THEN WE'LL DISCUSS THEM
ALL AT ONCE.
I ENCOURAGE YOU TO GET THE BIOS
FROM THE SPEAKERS AND WE MAY NOT
DESCRIBE THE FULL BODY OF WORK
THEY'VE DONE BUT YOU CAN GO TO
THE BOUGHTIES TO GET THEIR
INFORMATION.
IT'S MY HONOR TO WELCOME ROHAN
HAZRA TO KICK OFF THE SESSION
TODAY.
>> GOOD AFTERNOON AND/OR GOOD
MORNING OR GOOD EVENING.
I'M ROHAN HAZRA THE DIRECTOR OF
THE DIVISION OF EXTRAMURAL
RESEARCH AT NICHD.
AS DIRECTOR MY FOCUS IS ON
DEVELOPING, IMPLEMENTING AND
COORDINATING CROSS-CUTTING
MULTI-DISCIPLINARY RESEARCH
ACTIVITY WITHIN OUR MISSION.
RESEARCH PORTFOLIO IS QUITE
BROAD AND INCLUDES BIOLOGICAL
AND BEHAVIORAL AND CLINICAL
RESEARCH RELATED TO CONCEPTION
AND PREGNANCY AND NORMAL AND AB
NORMAL DEVELOPMENT AND
REPRODUCTIVE LIFE AND DYNAMICS
ACROSS THE LIFE SPAN.
WE SUPPORT $1.2 BILLION WORTH OF
RESEARCH THROUGH GRANTS AND
SPENT 6% ON TRAINING PROGRAMS,
THE DIR HAS 12 SCIENTIFIC BRANCH
TO CARRY OUT THIS BROAD RESEARCH
PORTFOLIO.
THE ILLNESS BRANCH IS ONE OF 12
DEDICATED TO SUPPORTING RESEARCH
AND TRAINING FOCUSSED ON
PREVENTING, TREATING AND
REDUCING ALL FORMS OF CHILDHOOD
TRAUMATIC INJURY AND CRITICAL
ILLNESS ACROSS THE CONTINUUM OF
CARE.
EMBEDDED IN THE MISSION IS THE
PRIORITY TO SUPPORT RESEARCH AND
UNDERSTANDING THE EFFECTS OF
PALLIATIVE CARE FOR SERIOUSLY
ILL CHILDREN AND THEIR FAMILIES.
BEFORE I CONTINUE I WANT TO
ACKNOWLEDGE WHAT A TREMENDOUS
JOB TESSIE HAS DONE IN LEADING
THE EFFORT AND FOR THE PROGRAM
CHIEF AND THE REST OF THE STAFF
FROM THE BRANCH.
I ACTUALLY HAVE THE PLEASURE OF
BEING ABLE TO ATTEND MOST OF
YESTERDAY'S SESSIONS AND WITH
YOU ALL HEARD A FANTASTIC PANEL
OF EXPERTS WHO OFTEN OVERVIEWED
THE EPIDEMIOLOGY OF CHILDREN
LIVING WITH ILLNESS AND
RESOURCES AND METHODOLOGICAL
APPROACHES AND EXPERTS
CHALLENGED TO US THINK OF THE
ILLNESS ON SOCIETY AND TO
CONSIDER THE NEEDS OF OUR MOST
VULNERABLE POPULATION, CHILDREN,
AS MEDICAL COMPLEXITY AND
NEONATES AND CRITICALLY ILL
CHILDREN.
I LOOK FORWARD TO EXPLORING WITH
YOU AND THE SPEAKERS THE IMPACT
OF PEDIATRIC SERIOUS ILLNESS ON
THE HEALTH AND WELL BEING OF
CHILDREN AND END WITH THE
IMPORTANT JUGS ABOUT THE
WORKFORCE NEEDS TO AND BUILDING
ON YESTERDAY'S DISCUSSION I WANT
TO HIGHLIGHT THINGS GOING ON AT
NICHD.
ONE THING IS OUR NEW VISION OUR
OUR CRITICAL RESEARCH NETWORK.
WE'RE LOOKING AT OUR NETWORK AS
NOT INDIVIDUAL ENTITIES BUT A
COLLECTIVE RESOURCE NOW OPEN TO
INVESTIGATORS NOT PART OF THE
NETWORK.
I WANT TO SPECIFICALLY WITH
RESPECT TO PALLIATIVE CARE,
PEDIATRIC AND HIGHLIGHT THE
COLLABORATIVE CRITICAL CARE
NETWORK, THE NEO-TANATAL NETWOR
AND THE BPCA NETWORK AND PARTLY
LED BY OTHERS WE'RE ROLLING OUT
A NEW PEDIATRIC PAIN NETWORK THE
PAIN CRITICAL TRIALS PROGRAM
UNDER THE HEAL PROGRAM WHICH IS
HELPING END ADDICTION LONG TERM.
SO WE WANT TO EMPHASIZE AS YOU
THINK ABOUT RESEARCH GAPS AND
OPPORTUNITIES THE KEY IS TO LOOK
AT EFFORTS AND THE RESOURCES
OPEN TO OUTSIDE INVESTIGATORS.
FINAL THING I WANT TO HIGHLIGHT
IS WE'RE ABOUT TO REFRESH OUR
STRATEGIC PLAN THAT WILL LAUNCH
IN 2025.
AND I DO EXPECT OPPORTUNITIES IN
THE COMING MONTHS FOR THE
PEDIATRIC PALLIATIVE CARE XOUPT
AND I URGE YOU TO LOOK FOR THE
OPPORTUNITIES.
AND ON A PERSONAL NOTE I STARTED
MY INTERNSHIP NOW 30 YEARS AGO
AND IN MY FIELD OF PERINATAL AND
HIV, 30 YEARS AGO WE HAD
TREMENDOUS NEEDS FOR PALLIATIVE
CARE.
I ALSO ON A PERSONAL NOTE WANT
TO NOTE AS AN INTERN A CHIEF
RESIDENT WAS JOANNE WOLF AND I
WORKED CLOSELY IN 2000 ON
TREMENDOUS NEED FOR THE
PALLIATIVE CARE IN THE FIELD OF
HIV.
ALSO, REFLECTING AFTER
YESTERDAY'S COMMENTS AND
DISCUSSION I ALSO REFLECTED ON
WHAT A TRANSFORMATION THERE'S
BEEN IN PERINATAL AND HIV OVER
THE LAST YEAR WHERE WE'VE
PRACTICALLY ELIMINATED NEW
INFECTIONS IN INFANTS AND
ADVISED CHILDREN WITH HIV TO
EXPECT TO LIVE A NORMAL LIFE
SPAN.
WHAT I HEARD YESTERDAY WAS VERY
INSPIRING ASPIRATIONS FOR A
SIMILAR TRANSFORMATION IN
PALLIATIVE CARE SCIENCE ACHIEVED
THROUGH BROAD BASED RESEARCH
EFFORTS AND COLLABORATION THAT
FULLY ENGAGE PARTNERS WITH
PATIENTS AND FAMILIES AND HAVE
MOST TO GAIN FROM THESE EFFORTS.
I LOOK FORWARD TO A SECOND
REALLY TREMENDOUS DAY NOR
CONFERENCE AND I'LL TURN IT OVER
TO DR. MAHONE.
>> THANK YOU SO MUCH, ROHAN.
IT'S INSPIRING TO HEAR ALL THE
EXCITING THINGS WE HAVE ONLINE
AT NICHD.
I ATTEND THE SESSIONS YESTERDAY
AND THEY WERE SO INSPIRING AND
WE'LL FOCUS ON CHALLENGE TO THE
RESEARCH FIELD AND HAVE AN
EXCITING MODERATED DISCUSSION
AND TO DO THAT WE HAVE ASSEMBLED
AN EXCITING PANEL OF SCHOLARS
AND LEADERS IN THE FIELD TO
DISCUSS THIS IMPORTANT TOPIC.
DR. AJAYI AND DR. DECOURCEY AND
DR. KAYE AND DR. PAMELA HINDS
WILL JOIN US IN AN EXCITING
DISCUSSION.
I INVITE YOU TO TURN YOUR
CAMERAS ON AND I'LL FIRST START
OFF WITH A ROUND ROBIN AND HAVE
YOU EACH INTRODUCE YOURSELF AND
BRIEFLY FOR ABOUT TWO MINUTES
TALK ABOUT YOUR ORGANIZATION AND
THEN I WILL PROCEED WITH
QUESTIONS.
IN THE END WE'LL HAVE TIME TO
ENGAGE IN A COLLECTIVE EXCHANGE
AND TAKE QUESTIONS FROM THE
AUDIENCE.
SO FIRST, LET'S START WITH LASE
AND SAY A FEW WORDS AND FOLLOWED
BY DANIELLE AND ERIK ERICA AND
PAMELA.
>> I'M DR. LASE AJAYI.
I GO BY LASE.
I'M FROM UNIVERSITY OF
CALIFORNIA SAN DIEGO AND USDA I
SERVE AS THE FELLOWSHIP DIRECTOR
FOR THE PALLIATIVE MEDICINE
PROGRAM AND A PHYSICIAN ADULT
PALLIATIVE CARE AT UCSD AND
PEDIATRICIAN AND IT'S FANTASTIC
TO BE THERE.
I WAS A RESEARCHER FOCUSSING ON
HEALTH DISPARITIES AND
PALLIATIVE MEDICINE RESEARCH AND
RECENTLY MOVED BY ACADEMIC AND
CLINICAL TIME TO UCSD.
MY RESEARCH FOCUS IS ON HEALTH
DISPARITIES AND MATERNAL FIELD
HEALTH DISPARITIES.
WE'LL TALK ABOUT THAT WHEN WE
TALK ABOUT THE ROUND ROBIN.
I HAVE FOCUS ON PAIN AND MY
FOCUS ON THE INTERSECTION OF
SERIOUS ILLNESSES AND MATERNAL
HEALTH DISPARITIES AND USING
TECHNOLOGIES TO GAP THE HEALTH
ACCESS AND HOW WE HEAR THE
VOICES OF OUR PATIENTS.
I THINK IT'S IMPORTANT WHEN WE
THINK ABOUT PALLIATIVE MEDICINE
AND HEALTH DISPARITIES I REALIZE
IN MY WORK AS A PEDIATRIC
PALLIATIVE CARE PHYSICIAN WHEN I
WAS HEARING THE STORIES OF MY
BLACK AND INDIGENOUS MOMS WHEN
THEY WENT THROUGH AND LOOK AT
BLACK MATERNAL MORTALITY AND
MORBIDITY AND THE PATIENT WE
DON'T SEE IN MEDICINE THAT
SPEARHEADED MY CLINICAL RESEARCH
IN A DIFFERENT DIRECTION.
IT WAS INTERESTING TO SEE HOW IT
ALL TIES TOGETHER IN THE WORK I
DO EVERYDAY.
IT'S A SMALL INTRO.
NOT TWO MINUTES BUT ENOUGH FOR
NOW.
>> THANK YOU.
>> I'M AN INTENSIVIST AND
PALLIATIVE CARE RESEARCHER IN
CHILDREN'S HOSPITAL AND LOOK AT
SERIOUS ILLNESS COMMUNICATION
AND ADVANCED CARE PLANNING FOR
CHILDREN WITH MEDICAL COMPLEXITY
AND CHRONIC CRITICAL ILLNESS.
I THINK LIKE YOU IS I WAS STRUCK
BY THE RESULTS AND OUTCOME OF
OUR LACK OF COMMUNICATION IN ICU
AS AN ATTENDING AND SEEMED THERE
MUST BE BETTER WAYS TO DO THIS
BECAUSE WE GET TO KNOW MANY
PATIENTS AND THEIR FAMILIES OVER
LONG PERIOD OF TIME I THINK
THERE'S SO MANY WAYS IN WHICH WE
CAN MOVE THE FIELD FORWARD.
I ALSO SERVE OVER THE LAST TWO
YEAR AS THE CHAIR OF THE SOCIETY
FOR CRITICAL CARE MEDICINE
PEDIATRIC PALLIATIVE CARE
INTEREST GROUP WHICH HAS BEEN
REWARDING AND INTERESTING IN
THAT OUR MEMBERS ARE BOTH
CLINICIANS AND SCIENTISTS FROM
BOTH ACADEMIC TEACHING HOSPITAL
AND IT'S BEEN INTERESTING TO
HEAR ABOUT AND UNDERSTAND
DIFFERENT NEEDS ACROSS SETTINGS.
THANK YOU.
>> FRIENDLY GREETINGS TO YOU
FROM CHILDREN'S NATIONAL
HOSPITAL IN WASHINGTON, D.C. AND
THE SCHOOL OF MEDICINE AND
HEALTH SCIENCES AT G.W.
I WANT TO REALLY GIVE THANKS TO
DR. OCTOBER AND THERE MAHOMES
AND PLEASED TO SEE THE
LEADERSHIP GIVEN TO PEDIATRIC
PALLIATIVE CARE ACROSS
INSTITUTE.
I WANT TO THANK YOU.
I'M A NURSE SCIENTIST IN
PEDIATRICS AND PALLIATIVE CARE
WITH A STRONG BACKGROUND IN
PEDIATRIC ONCOLOGY AS WELL WITH
A UNIQUE FOCUS, I GUESS, ON
MEASUREMENT AND PATIENT-REPORTED
OUTCOMES HAVING DRIVEN A LARGE
PART OF MY CAREER AND AT THE
REQUEST OF MY PEDIATRIC PATIENTS
THEN SHIFTING FOCUS TO INCLUDE
FAMILIES AND A NURSE SHIFTING TO
INCLUDE FAMILIES BUT IN TRUTH I
WAS SO FOCUSSED ON THE CHILD
VOICE IT WASN'T UNTIL CHILDREN
SAID TO ME I'M WORRIED ABOUT MY
PARENTS.
I LIKE YOUR STUDIES.
PLEASE WOULD YOU INCLUDE THEM.
I THEN BROADENED MY PERSPECTIVE
AND GRATEFUL TO THE CHILDREN AND
PARENTS WHO TAUGHT ME ABOUT A
CONCEPT THEY LABELLED BEING A
GOOD PARENT TO MY VERY ILL
CHILD.
AND THAT WORK WE CONTINUE HERE
AT CHILDREN'S NATIONAL.
THANK YOU, DR. MAHOMES.
>> ERICA.
>> HI, EVERYONE.
I'M GLAD TO BE HERE.
I'M ERICA KAYE AND DIRECT OUR
QUALITY OF LIFE AND PALLIATIVE
CARE RESEARCH DIVISION AT
ST. JUDE IN MEMPHIS AND GRATEFUL
TO BE HERE AND HELPING TO
REPRESENT THE AMERICAN ACADEMY
OF HOSPICE AND PALLIATIVE
MEDICINE WITH A FOCUS ON WHAT
WE'RE DOING TO SUPPORT EFFORT
AND GROWTH AND ECHOING WHAT
EVERYONE SAID AND THANKING
TESSIE AND EVERYBODY FOR
ORGANIZING THIS EVENT.
>> THANK YOU, ALL GOOD-BYE FOR
JOINING US.
THIS IS GOING TO BE A WONDERFUL
INTERACTIVE DISCUSSION.
I'LL START WITH QUESTIONS AND
WE'LL LEAVE TIME FOR YOU TO ASK
EACH OTHER QUESTIONS.
LASE, WE'LL START WITH YOU.
WE KNOW YOU'RE INTERESTED IN THE
PALLIATIVE CARE NEEDS OF
CHILDREN LIVING TO ADULTHOOD
WITH SERIOUS ILLNESS AND HAVE
INTEREST IN HEALTH EQUITY WORK
AS WELL.
MY QUESTION IS THAT ADVANCES IN
MEDICINE HAVE REDUCED THE
MORTALITY IN PEDIATRICS YET
MORBIDITIES PERSIST WITH
INCREASING OF POPULATIONS OF
CHILDREN LIVING INTO ADULTHOOD
WITH SERIOUS ILLNESS.
WHAT'S YOUR ROLE IN CARING FOR
THE CHILDREN'S AND WHAT ARE THE
BIGGEST GAPS IN OUR KNOWLEDGE AS
THE CHILDREN TRANSITION INTO
ADULTHOOD AND IT'S ONE OF THE
NICHD STRATEGIC THEMES IN OUR
STRATEGIC PLAN.
WE'RE INTERESTED IN LEARNING
MORE ABOUT THAT.
>> I LOVE THAT QUESTION BECAUSE
WHAT BROUGHT ME TO PALLIATIVE
MEDICINE WAS KIDS WITH SICKLE
CELL DISEASE AND YOU SEE THEM
HAVE THE TRANSITION POINTS AND
IT'S FROM PED TO ADULTS WE SEE
THE HIGHEST MORBIDITY AND
MORTALITY AND WE LOSE THEM IN
THE HOSPITAL AND ALSO TRUE FOR
OUR CANCER SURVIVORS AND
PATIENTS WITH CFS WHERE I CUT MY
TEETH IN RESEARCH WHEN I LOOK AT
THAT AND IT'S WHERE WE MISSED
THE OPPORTUNITY AS WE HAVE THIS
TRANSITION WE TAKE EITHER REALLY
GOOD CARE OF THEM IN KIDS AND
THEN AS THEY TRANSITION TO
ADULTHOOD WE DON'T KNOW HOW TO
TAKE CARE OF THEM.
THEY LOSE THE WRAP AROUND AND
WE'RE NOT -- THERE'S A GAP IN
HOW WE TRANSITION BACK HERE TO
THEM AND IT'S REALLY HARD
BECAUSE IN THAT PERIOD WE KNOW
THESE KIDS AND YOUNG ADULTS ALSO
HAVE THE SENSE OF INVINCIBILITY
WHERE THEY'RE NOT AS COMPLIANT
WITH THEIR MEDICATIONS AND
TRANSITION FROM THE SUPPORT AND
CARE TEAM THAT HELPS THEM BE
CONSISTENT WITH THE TREATMENT
PLANS THEY NEED TO LIVE LONGER
AND BETTER AND WE AS A MEDICAL
SYSTEM CAN'T TRANSITION THEM TO
ADULTS AND WE'RE IN PALLIATIVE
MEDICINE WE'RE POSITIONED TO
HAVE THE SUPPORTIVE CARE THEY
NEED FROM A PSYCHOSOCIAL AND
SYMPTOM MANAGEMENT AND LOOK AT
THAT APPROACH AND WHOLE PERSON
APPROACH WE IN PALLIATIVE
MEDICINE DO SO WELL.
WE SOMEWHERE THIS GAP IN CARE.
I HIGHLIGHT THOSE DISEASES
BECAUSE THOSE MARGINALIZATION
WITH SICKLE CELL DISEASE AND
IT'S GREAT THEY APPROVED TWO NEW
MEDICINES BUT YOU LOOK AT HOW
MUCH IT'S GOING TO COST AND HOW
ACCESSIBLE IT'S GOING TO BE
THERE'S A HUGE GAP THERE.
THERE'S A ROLE FOR TO US PLAY
AND WHEN WE LOOK AT THE PATIENT
POPULATION AND WHO IN PALLIATIVE
MEDICINE ARE WE REACHING AND
LOOKING AT THOSE WITH THE
HIGHEST MORBIDITIES IN THE
POPULATION AND LOOK AT THE
DEMOGRAPHICS AND WHO THEY'RE
REACHING AND PALLIATIVE
MEDICINE, WHO ARE WE REACHING
AND PROVIDING OUR SERVICES TO
AND WHY IS THAT?
THAT'S A GAP IN KNOWLEDGE AND
WAY WE CAN STRENGTHEN THAT AND
HOW DO WE MAKE OURSELVES MORE
ACCESSIBLE.
WHAT IS THAT FEAR?
I THINK THOSE ARE GAPS AND
RESEARCH IN CARE WE CAN BEGIN TO
ADD MORE TO.
>> THAT'S A REALLY IMPORTANT
RESEARCH QUESTION, WHO ARE WE
REACHING AND THE POPULATION OF
WHAT SOME OF THE CHALLENGES ARE
IN THAT REGARD.
THANK YOU FOR THAT I WANT TO
FOLLOW THAT QUESTION UP WITH
TALKING ABOUT PREGNANT PEOPLE
WITH SERIOUS ILLNESS AND PIGGY
BACKING ON YOUR POINT ABOUT WHO
WE'RE REACHING.
WHAT ARE THE BIGGEST CHALLENGE
US MIGHT SEE FOR PREGNANT WOMEN
AND THE IMPACT OF THEIR HEALTH
AND THE HEALTH OF THEIR CHILD?
>> THERE'S A CLEAR LACK OF DATA.
WE DIDN'T WANT TO THINK ABOUT
COVID-19 AND THEY WEREN'T
INCLUDED IN THE CLINICAL TRIALS
FOR THE VACCINE.
WHAT IS SAFE AND NOT SAFE NOW
AND WHEN WE EXCLUDE PEOPLE FROM
CLINICAL TRIALS AND RESEARCH
THEN YOU DON'T HAVE INFORMATION
AND THIS IS TALKED ABOUT
YESTERDAY I THINK AND IT'S HOW
DO WE MAKE OURSELVES REACH THAT
POPULATION AND CONDUCT THE
QUESTIONS AND I THINK PAM DOES
THIS WELL IN HER WORK INCLUDING
THE VOICES AND HAVING THEM BE AT
THE FOREFRONT IN OUR QUESTIONS
BUT WHEN WE LOOK AT PREGNANT
WOMEN WITH SERIOUS ILLNESS AND
WOMEN WITH CANCER UNDERGOING
ONCOLOGY TREATMENTS AND PREGNANT
WHAT HAPPENS TO THEM AND THEIR
BABY AND WHAT'S IMPORTANT TO
THEM.
SAME WITH WOMEN WITH SICKLE CELL
DISEASE AND ON OPIOIDS AND THESE
ARE QUESTIONS WE DON'T HAVE
ANSWERS TO AND I'LL BE MORE
PROVOCATIVE BECAUSE OF MY DRIVE
HERE TODAY TO THE OFFICE, KATE
COX WHO HAD TO LEAVE THE STATE
TO GET AN ABORTION AND THE NEWS
IS TALKING ABOUT HOW TRANSMIT 18
IS UNIVERSELY FATAL BUT THE
HIGHLIGHT OF WHAT I'M LISTENING
TO AND THE NEWS ABOUT HER STORY
SHE HAD TO LEAVE THE STATE
BECAUSE OF MEDICAL REASONING FOR
ABORTION.
BUT I AS A PEDIATRIC PALLIATIVE
CARE PHYSICIAN AND RESEARCHER I
LOOK AT IT AS A PERSON WHO WAS
LIKELY FACED WITH AN IMPOSSIBLE
DECISION AND DID HE HAVE ACCESS
TO PALLIATIVE CARE?
WHO WAS ADVISING HER AND CARING
FOR HER AND DID SHE EVEN FEEL
SAFE IN ASKING.
AND WHEN WE PUT RESTRICTIONS ON
PREGNANT PEOPLE AND AFRAID TO
ASK FOR THIS CARE THEY NEED AND
A MIDDLE CLASS WHITE WOMAN WHO
HAS THE RESOURCES TO HAVE HER
STORY TOLD, I THINK OF HOW MANY
MORE WHO WERE IN THIS POSITION
AND DON'T HAVE ACCESS TO THESE
SERVICES AND WHAT ELSE ARE WE
MISSING?
WHEN WE SEE THE INTRUSION OF
GOVERNMENTS INTO THE CARE WE CAN
PROVIDE TO OUR PATIENT, WHAT ARE
WE MISSING AND FROM A PRACTICAL
CARE STANDPOINT AND FROM A
RESEARCH STANDPOINT AND WHAT WE
CAN DO FOR OUR PATIENTS AND THE
PATIENT-REPORTED OUTCOMES FROM
THE MOTHER'S AND BABY'S
STANDPOINT.
A LOT GOES INTO THAT AND WHAT
ALSO HURTS ME IS THE COURTS ARE
SAYING, WELL, IT'S NOT OUR FAULT
THAT PREGNANT PEOPLE ARE DYING.
IT'S THE DOCTORS.
THEY'RE MAKING THE DOCTORS THE
SCAPEGOAT BUT OUR HANDS ARE TIED
FOR THE CARE TEAM BECAUSE WE
DON'T HAVE THE ABILITY TO HELP.
IT'S A LONG ANSWER BUT COMPLEX
ANSWER.
>> I CAN BACK UP AND ADD WHO
GETS CARE AND WHO PAYS FOR THE
CARE AND WHEN DOES THE PAYMENT
START?
WE RECENTLY SERVED ON A NATIONAL
ACADEMIES WORKING GROUP LOOKING
AT WHO PAYS IN PEDIATRIC
PALLIATIVE CARE FOR EXAMPLE
SURVIVORS OF CHILDHOOD CANCER,
THE PAYMENT DOES OCCUR BUT IT
ENDS AT AGE 18.
LOOKING AT THE DATA WE HAD
AVAILABLE TO US TO MAKE
RECOMMENDATIONS TO THE SOCIAL
SECURITY AND I THINK THE
QUESTION WE ALL HAVE TO KEEP IN
FRONT OF US IS WHO PAYS BECAUSE
THAT'S RELATED TO WHO GETS THE
CARE.
>> I'LL CONTINUE ON WITH YOU AND
ASK YOU DOWNTOWN TO ELABORATE ON
THE COMMENTS YOU MADE EARLIER
ABOUT MULTI-DISCIPLINARY WORK
AND ENSURE THE VOICES ARE HEARD
WHAT STRATEGIES DO YOU USE TO
DETERMINE ELIGIBILITY AND ANY
TIPS ON ENROLLING VARIATION
PATIENTS, CHILDREN IN STUDIES
AND MAKING SURE THE VOICE HEARD
IN OUR RESEARCH.
>> SO RULE OF THUMB AND ALSO
SUPPORTED BY OUR DATA, CHILDREN
WHO HAVE BEEN TREATED FOR A LONG
TIME AND OFTEN FOR A RECURRENCE
ARE ABLE TO GIVE VOICE AT A FAR
YOUNGER VOICE THAN CHILDREN
BEING TREATED FOR THE FIRST
TIME.
SO CIRCUMSTANCES PLAY INTO ANY
ONE ANSWER.
WHAT WE KNOW IS CHILDREN AS
YOUNG AS AGE 4 TREATED
PREVIOUSLY ARE ABLE TO GIVE US
WHAT WE CONSIDER TO BE VALID
RESPONSES TO WHAT THEY'RE BODIES
ARE FEELING AND WHAT THEY ARE
WORRIED ABOUT.
THERE ARE CLINICAL ANECDOTES OF
CHILDREN AS YOUNG AS 3 OF
CLAIMING THAT AND CAUTIOUS ABOUT
THAT.
AND CHILDREN IN OUR STUDIES OVER
1200 IN QUALITY OF LIFE STUDIES
ABOUT 20% STARTED OUT NOT BEING
ABLE TO ANSWER OUR PROMPTS AT
THE TIME OF DIAGNOSIS AND AT
THREE MONTHS FOLLOWING THEIR
DIAGNOSIS THEY WERE ABLE TO
ANSWER THE PROMPTS WE WERE
POSING TO THEM.
WHEN WE FIRST STARTED ASKING
THEM THEY WOULD TURN TO THEIR
MOTHER AND SAY, MOMMY, WHAT'S MY
ANSWER BUT AT THREE MONTHS, POST
DIAGNOSIS THEY WERE GIVING ME
THEIR ANSWER.
I THINK ALWAYS WITH PEDIATRIC
PALLIATIVE CARE AND AGE ONE
CONSIDERATION AND SERIOUSNESS OF
ILL, AND THE IMPACT AT THE
MOMENT OF MEASUREMENT ABOUT
PRESENT SYMPTOMS WE MUST EXPECT
SOME CHILDREN WILL BE
FORTHCOMING AND SOME CHILDREN
HESITANT.
THERE ARE HONEST DOUBTS ABOUT
THE ABILITY OF CHILDREN TO GIVE
VOICE TO WHAT THEIR BODY IS
TELLING THEM.
WE RECENTLY COMPLETED A SURVEY
WITH 120 CLINICIANS TELLING US
CHILDREN AS YOUNG AS AGE 4 FOR
PEDIATRIC ONCOLOGY ARE ABLE TO
GIVE THEM THEIR VOICE.
ABOUT 12.
OF THE CLIN ICES SAID THEY WERE
LEERY OF BELIEVING THAT BUT THE
REST INDICATED IT IS BELIEVABLE
AND BELIEVABLE ENOUGH THEY MIGHT
CHILDREN SUPPORTED CARE TO MEET
THE DEMANDS OR THE NEEDS OF
THESE CHILDREN.
WHEN WE SEEK A CHILD'S VOICE,
IT'S INTERESTING BECAUSE YOU
WANT TO DO IT IN A WAY THAT
DOESN'T TAKE AWAY A PARENTAL
SENSE OF THEIR ESSENTIAL ROLE OF
OUR REGARD FOR THEM.
NOR DOES IT REPLACE THE
CLINICIAN VOICE.
IN PEDIATRIC PALLIATIVE CARE IN
ONCOLOGY WE WANT ALL THREE
VOICES.
ONE DOESN'T TRUMP THE OTHER.
THEY ALL THREE ARE NEEDED.
AND IT MAY BE WHAT COMES OUT OF
SEEKING ALL THREE IS A REALLY
GOOD CLINICAL DISCUSSION ABOUT
THE FAMILY IMPACT OF THIS
DIAGNOSIS AND TREATMENT.
>> IT SEEMS TO ME THE
TRIANGULATION OF THE DATA WOULD
HELP SHINE A LIGHT ON THE
CRITICAL AREAS WHERE THERE'S A
NEED AND WHERE SERVICES COULD BE
PROVIDED I WANT TO PIGGY BACK ON
SOMETHING SOMETHING DR. JOHNSON
SAID IN HER TALK TALKING ABOUT
HER NEED FOR QUALITATIVE
RESEARCH.
WHERE DOES IT FIT IN IN TERMS OF
HAVING VOICES HEARD?
>> ERICA YOU WOULD BE SPOT ON
THIS.
>> I'M GLAD TO ANSWER THAT
QUESTION.
QUALITATIVE RESEARCH IS
AUTHENTIC STORY TELLING TO
ELEVATE THE VOICES OF THOSE
WHOSE LIVED EXPERIENCE ESSENTIAL
TO OUR UNDERSTANDING FOR HOW WE
CAN BEST SUPPORT INDIVIDUAL
COMMUNITY'S HEALTH CARE SYSTEMS
AND SO MUCH OF THE WORK IN
PALLIATIVE CARE IS NUANCED AND
DIFFICULT TO CAPTURE AND AU --
AU -- AUTHENTICALLY REPLAY THIS
AND WHILE PIECES MAY BE TRUTHFUL
ARE INCOMPLETE.
TO THE WHOLISTIC NATURE AND IT'S
INSTRUMENTAL IN HELPING TO
CREATE AND FLUSH OUT THE WHOLE
PICTURE STORY SO IT DOESN'T
REPLACE QUANTITATIVE DATA IT
SUPPORTS AND SUPPLEMENTS AND
SORT OF LEADS WHEN STORY TELLING
IS PARAMOUNT TO UNDERSTANDING
THE SOURCE AND STEPS FORWARD TE
ADDRESSING THE CHALLENGE.
>> IT ADDS IN THE MISSING PIECES
AND AMPLIFIES THE QUANTITATIVE
DATA THAT CAN BE STACK AND ADDS
THE POWER WE'RE MISSING.
WELL STATED.
>> ABSOLUTELY.
ERICA, AND WHAT ARE SOME OF THE
BARRIERS INNING THIS RESEARCH
AND THE DEVELOPMENTAL ISSUES
WITH YOURN CHILDREN AND HOW DO
WE -- YOUNG CHILDREN ARE
REFLECTING WHAT THEY'RE
EXPERIENCING IN THEIR BODY.
WHAT ARE OTHER BARRIERS IN DOING
THIS KIND OF RESEARCH AND
ADDRESSING THE NEEDS OF THESE
CHILDREN AND THEIR FAMILIES.
>> THAT'S A WONDERFUL QUESTION.
10 YEARS AGO SOME BARRIERS I
HEARD PEOPLE RAISE WITH GENUINE
CONCERNS ARE WHAT I HEAR NOW AND
THERE'S OPPORTUNITIES FOR US TO
SHARE OUR EXPERIENCES AND THINK
THROUGH BARRIERS AND DEBUNK
FEARS REPACKAGED AS BARRIERS.
THE MAIN BARRIERS IN QUALITATIVE
RESEARCH TO ELEVATE THE VOICES
OF PATIENTS AND FAMILIES WAS
THAT IT WOULD BE A BURDEN ON
THEM.
WE AS PALLIATIVE CARE
RESEARCHERS ARE INTIMATELY
CONSUMED WITH THE BURDENS AND
NONE OF US WANT TO IMPOSE A
BURDEN BUT MY INSTINCT WAS TO
ASK FAMILIES AND PATIENTS ON
WHAT CAUSES A BURDEN AND WHAT WE
FOUND WERE EVEN THE PATIENTS AND
FAMILIES GOING THROUGH THE
HIGHEST STRESSED TIME POINTS IN
THEIR LIFE REALLY VALUED AN
OPPORTUNITY TO BE ASKED WHAT
THEIR PERSPECTIVE AND INSIGHTS
WERE.
IN PART IT'S BECAUSE THEY FEEL
HEARD AND SEEN AND VALUED AS
WHOLE PEOPLE.
IN PART BECAUSE WHEN WE TALK TO
PARENTS OR BEREAVED FAMILIES
THERE'S A COMPONENT OF ALTRUISM
AND HONOR THEIR CHILD'S LEGACY
IN AN ONGOING FEEDBACK AND SOME
FAMILIES OPT OUT BUT MANY ARE
GRATEFUL TO BE GIVEN THE
OPPORTUNITY TO PARTICIPATE IN
QUALITATIVE RESEARCH.
WE DID A STUDY WHERE WE ASKED ON
THE SIDE WAS THIS EXPERIENCE
BURDENSOME, PAINFUL TO YOU OR
USEFUL AND NEUTRAL LANGUAGE AND
WAS NOT THE GOAL OF THE RESEARCH
IT WAS A TANGENTIAL QUESTION
BECAUSE WE WERE CURIOUS AND
GETTING PUSHBACK FROM REGULATORY
FOLKS AND WERE AMAZED THE VAST
MAJORITY SAID IT HIT WAS HELPFUL
THOUGH THE GOAL WAS NOT TO HELP
THEM BUT RATHER TO GAIN
KNOWLEDGE TO HELP OTHER PEOPLE
IN THE FUTURE.
WE'VE SEEN THAT FINDING AFFIRMED
IN SUBSEQUENT STUDIES AS WELL.
I ENCOURAGE FOLKS WHEN YOU HEAR
THE THAT QUALITATIVE WORK IS
THIS TYPE OF ENGAGEMENT IN
SCIENCE IS A BURDEN ON PATIENTS
AND FAMILIES TO GENTLY PUSHBACK
AND ALLOW THAT TO INFORM HOW YOU
ENGAGE IN THE RESEARCH.
>> WELL SAID.
I'VE HEARD THE PHRASE TWICE THE
PHRASE WHOLE PERSON
COMPREHENSIVE CARE, VALUE
MEANING.
LET'S LEAN INTO THAT A LITTLE
BIT AND I'M GOING TO ASK
DANIELLE SAY SOMETHING ABOUT THE
INTEREST GROUP AND THE
MULTI-DISCIPLINARY NATURE OF
THAT AND HOW DO WE BRING IN ALL
THE COLLECTIVE VOICE TO CREATE
AN ENVIRONMENT WHERE WE'RE
FOCUSSING ON THE WHOLE PERSON
AND LIFTING UP THE LEGACY OF THE
CHILD OF THE FAMILY.
WHAT COMMENTS DO YOU HAVE IN
THAT REGARD?
>> BEFORE I GO THERE FOR A
SECOND I WAS GOING TO TOUCH
BRIEFLY UPON WHAT ERICA SHARED
BECAUSE WE HAD THE SAME
EXPERIENCE.
WE HAD PUSHBACK AROUND OUR IRB
AROUND BENEFIT AND STRESS AND
LITTLE OPEN ENDED QUESTION
AROUND EXPERIENCE AND IT WAS
MORE BENEFICIAL TO SHARE THEIR
CHILD'S STORY AND HELP PARENTS
GOING THROUGH THE SAME THING.
I WANT TO DRIVE THAT HOME
BECAUSE IT'S NEAR AND DEAR TO MY
HEART.
IT IS MULT DISCIPLINARY THOUGH I
WOULD SAY THAT'S ONE AREA THAT
WE HAVE BEEN REALLY TRYING TO
FOCUS ON IS ENSURING THAT WE ARE
EXTENDING INVITATIONS AND MAKING
OUR GROUP KNOWN TO NOT ONLY
PHYSICIANS WHICH THE GROUP TENDS
TO BE IN CRITICAL CARE MEDICINE
IS PHYSICIAN HEAVY,
UNFORTUNATELY BUT TO NURSING AND
NURSE PRACTITIONERS AND SOCIAL
WORKERS AND CHILD LIFE AND
EVERYBODY THAT TOUCHES THE
CHILDREN WE CARE FOR IN A
STRESSFUL ENVIRONMENT.
THERE'S A REAL NEED TO SUPPORT
CLINICIANS AND RESEARCHERS THAT
ARE WORKING IN BOTH THESE
ACADEMIC AND NON-ACADEMIC
CENTERS.
WE HAVE MANY CLINICIANS WHO WORK
IN COMMUNITY HOSPITALS AND GIVEN
THE UNDER STAFFING AND
BURGEONING CLINICAL WORK FLOW
EXPERIENCED BY THESE CLINICIANS,
THEY DON'T HAVE AMPLE TIME FOR
THINKING ABOUT QUALITY
IMPROVEMENT OR RESEARCH OR THEY
HAVE LIMITED INFRASTRUCTURE TO
IMPROVE THE CARE THEY'RE
PROVIDING DESPITE KNOWING
THERE'S CARE TO BE MADE.
UTILIZING THE SPECIAL INTEREST
GROUPS TO THE EXTENT WE CAN MAKE
OUTREACH ACROSS SITES ESPECIALLY
TO THOSE WITHOUT SUB SPECIALTY
PALLIATIVE CARE PROGRAMS WHICH
THERE ARE A LOT, TO UNDERSTAND
HOW THE NEEDS DIFFER AND HOW WE
MIGHT PROVIDE SUPPORT IN THE
FORM OF EITHER CREATING FORUMS
TO DISCUSS CLINICAL DILEMMAS OR
DIFFICULT CASES OR TO HELP EQUIP
THEM WITH PALLIATIVE SKILLS FOR
THEM OR THEIR TRAINEES IS
IMPORTANT RIGHT NOW.
>> ABSOLUTELY.
ERICA, YOU'RE A LEADER IN
AMERICAN ACADEMY OF HOSPICE AND
PALLIATIVE MEDICINE.
WHAT IS HHPM DOING TO SUPPORT
RESEARCH AND HONE IN ON SHINING
A LIGHT ON THESE VOICES?
>> WE'RE COMING OFF ROBUST
CONVERSATIONS NOT JUST AT THE
AMERICAN ACADEMY OF HOSPICE AND
IN PARTNERSHIP WITH LEADERSHIP
WITH THE PREVIOUS PCRC AND NPCRC
WITH A FOCUS ON HOW TO
STRENGTHEN AND SUPPORT
RESEARCHERS IN SERIOUS ILLNESS
AND BEING PURPOSEFUL ABOUT
FOCUSSING ON HOW WE SUPPORT
PEDIATRIC PALLIATIVE CARE
RESEARCH WITHIN THE COMMUNITY.
I WANT TO HIGHLIGHT A COUPLE
THINGS THAT HOPEFULLY ARE
FAMILIAR TO MANY BUT IF NOT I
ENCOURAGE YOU TO REACH OUT TO ME
AND I'M GLAD TO CONNECT PEOPLE
WITH AREAS OF INTEREST SO I WANT
TO HIGHLIGHT A RESEARCH SCHOLAR
PROGRAM WHICH HISTORICALLY HAS
FUNDED A NUMBER OF PEDIATRIC
PALLIATIVE CARE EARLY CAREER
INVESTIGATORS AND IS A REALLY
NICE MECHANISM TO HELP FOLKS
LAUNCH A RESEARCH CAREER.
IN THE PAST THIS HAS GOTTEN YOU
AN INVITE TO THE ANNUAL AND PCRC
FOLLY RETREAT AND THIS WILL
CONTINUE AFTER THE END OF THE
FOLEY RETREAT WITH THE SCHOLARS
GETTING SPONSORED TO ATTEND
OTHER MECHANISMS LIKE STATE OF
THE SCIENCE.
FOR THOSE LOOKING FOR WAYS TO
NETWORK AND ENGAGE AT THE
RESEARCH COMMUNITY AND RESEARCH
SCHOLARS PROGRAM IS AN IMPORTANT
MECHANISM.
THE ACADEMY ALSO IS COORDINATING
AND EXECUTING THE STATE OF THE
SCIENCE MEETING WHICH HOPEFULLY
MANY OF US ARE FAMILIAR WITH.
IT'S CURRENTLY A BIENNIAL
CONFERENCE AND THE GOAL IS FOR
THIS TO BE A HOME FOR SERIOUS
ILLNESS RESEARCHERS WITH
PURPOSEFUL INCLUSION AND
INVASION OF PALLIATIVE CARE
RESEARCH UPON THE FORUM AND
THERE'S ONGOING CONVERSATION AND
ACTIVE PARTNERSHIP WITH PCRC
LEADERSHIP TO HOPEFULLY DEVELOP
FEDERALLY FUNDED CONSORTIUM TO
SUPPORT SERIOUS ILLNESS
RESEARCHERS.
I WANT TO STRESS THERE ARE PLANS
TO INCLUDE AND HIGHLIGHT THE
IMPORTANCE OF SERIOUS ILLNESS
RESEARCH FOR CHILDREN AND
FAMILIES HERE.
I'M REALLY EXCITED TO INTRODUCE
HOT OFF THE PRESSES A NEW
MECHANISM JUST APPROVED BY THE
ACADEMY'S BOARD TO CREATE AND
IMPLEMENT RESEARCH CORES OF
EXPERTS TO HELP PROVIDE BOTH
METHOLOGIC SUPPORT AND HOPING TO
HAVE A RESEARCH MENTOR ACADEMY
TO SUPPORT EARLY AND MID CAREER
RESEARCHERS AND EVEN PEOPLE WHO
CONSIDER THEMSELVES EARLY CAREER
BUT ALSO HAVE A CAREER
DEVELOPMENT AWARD OR K MECHANISM
HAVE MENTORSHIP TO GIVE AS DO
MID CAREER INDIVIDUALS.
BRINGING THEM TOGETHER AND
SUPPORTING THEM AND HELPING THEM
IN THEIR PROMOTION PROCESS AND
GIVING THEM SUPPORT TO MENTOR
OTHERS IN A WAY THAT'S
SUBSIDIZED.
IT VALUES YOUR EXPERTISE AND
TIME AND WE'RE LOOKING FORWARD
TO EXPLAINING THIS PROGRAM IN A
BIT MORE DETAIL AND AT THE
UPCOMING STATE OF THE SCIENCE
AND THERE SHOULD ALSO BE SOCIAL
MEDIA AND MESSAGES COMING OUT TO
HELP RECRUIT FOR THE PROGRAM.
AND TO THE RESEARCH COMMITTEE
DOES A LOT OF WORK TO HELP
SUPPORT RESEARCH VOICES AND
GOALS AND HAVE HISTORICALLY
SUPPORTED SERIOUS ILLNESS
RESEARCH FOR CHILDREN AND
FAMILIES AND SO THIS COMMITTEE
CAN REVIEW INVESTIGATOR-LED
RESEARCH CONCEPTS AND REVIEW
SURVEYS OTHER MATERIALS.
WE CAN ALSO HELP REVIEW AND
ENDORSE OR SANCTION WHITE PAPERS
OR POSITION STATEMENTS THROUGH
THE ACADEMY WHICH CAN BE VERY
HELPFUL IN ADVOCACY EFFORTS.
WE REVIEW AND SCORE SCHOLARLY
WORKS INCLUDING ABSTRACTS FOR
STATE OF THE SCIENCE AND HELP
COORDINATE AND PARTNER WITH JPSM
ON PUBLICATIONS.
WE'VE DONE SYSTEMATIC REVIEWS OF
LITERATURE AND IN THE PROCESS OF
PUTTING TOGETHER ADVOCACY PIECES
SPECIFIC TOWARDS SUPPORTING
EARLY CAREER INVESTIGATORS IN
SERIOUS ILLNESS RESEARCH.
I'M GLAD TO CEDE THE FLOOR AND
TAKE QUESTIONS RELATED TO THAT
AND WE ENCOURAGE PEOPLE TO GET
INVOLVED.
THERE'S MOVEMENT AND DISCUSSION
HOW THE ACADEMY SHOULD BETTER
SUPPORT RESEARCH AND INTEREST IN
SUPPORTING PEDIATRICS WITH THE
RECENT DEVELOPMENT OF THE
PEDIATRICS COUNCIL.
NOW'S A GOOD TIME TO GET
INVOLVED IF YOU'RE NOT ALREADY.
>> ABSOLUTELY.
IS THERE A WEBSITE PEOPLE CAN GO
TO GET THE INFORMATION?
>> HHPM CONNECT IS CONSIDERED
THE BEST HUB THERE'S ALSO LIST
SERVES.
I'LL SHOUT OUT IF YOU'RE AN
EARLY CAREER INVESTIGATOR TO
REACH OUT TO DR. AMY PORTER WHO
IS LEADING THE EARLY
INVESTIGATOR FORUM WHICH IS A
PRETTY ROBUST LIST SERVE AND
THERE'S A RESEARCH SIG AND
BETWEEN THE TWO LIST SERVES I
THINK IT'S PROBABLY 600 OR 700
MEMBERS STRONG AND GROWING.
AND PCRC HAD IMPORTANT AND
HIGHLY NETWORKED
COMMUNITY-COMMUNITY CENTERED
SPECIAL INTEREST GROUPS THAT
WILL BE MOVING UNDER THE
AUSPICES OF THE ACADEMY AND
RESEARCH COMMUNITY TO HELP
SUPPORT THE ADMINISTRATIVE NEEDS
AND PROCESSES.
THOSE ARE ALSO GOOD COMMUNITIES
TO PLUG INTO.
FAN
>> FANTASTIC.
WONDERFUL.
THERE'S GOING TO BE A
PRESENTATION ON THE WORKFORCE
AND WE HAVE FIVE MINUTES OR SO
LEFT.
IF YOU CAN SAY A WORD OR TWO
ABOUT MAYBE SOME LESSONS LEARNED
YOU HAVE IN DOING THIS WORK AND
WHAT COMPELLED YOU TO GO INTO
THIS FIELD IN THE FIRST PLACE TO
DO THIS WORK AND WHAT LESSONS
YOU MIGHT BE ABLE TO SHARE FOR
AN EARLY STAGE INVESTIGATOR WHO
MIGHT BE THINKING ABOUT WHETHER
OR NOT THEY WANT TO DO RESEARCH
IN THIS AREA?
I'LL START LASE WITH YOU.
ANY LESSONS LEARNED WORDS OF
ENCOURAGE THE FOR FOLKS GOING IN
THE AREA?
HOW DO WE BUILD THAT PIPELINE?
>> I THINK WHEN YOU START
RESEARCH CAN SEEM INTIMIDATING
AND WHEN YOU TALK TO OTHERS IN
THIS FIELD THEY USE WORDS YOU
MAY NOT BE FAMILIAR WITH.
I THINK IF YOU REALIZE YOU'RE
STARTING OFF WITH A QUESTION,
RESEARCH IS ONLY A QUESTION YOU
WANT TO BE ANSWERED.
FIND SOMEONE TO HELP YOU ANSWER
THAT QUESTION.
DON'T BE INTIMIDATED BY THE
DIFFERENT WORDS OR PHRASING
AROUND IT REMEMBER YOU'RE ASKING
THE QUESTION BECAUSE I WANT TO
MAKE THE LIVES BETTER FOR YOUR
PATIENTS I THINK YOU HEARD
RESOURCES ABOUT GROUPS THAT CAN
HELP YOU.
AND FIND SOMEONE TO HELP YOU
ANSWER THE QUESTION BECAUSE
THAT'S WHAT RESEARCH IS IS
TRYING TO FIND THE BEST WAY TO
ANSWER THE QUESTION YOU HAVE.
THAT'S ALL IT IS.
EVERYTHING ELSE FALLS INTO PLACE
ONCE YOU REALIZE YOU JUST HAVE A
QUESTION YOU WANT TO BE
ANSWERED.
>> PAM.
>> I VERY MUCH SUPPORT WHAT LASE
JUST SAID SO THANK YOU FOR THAT.
WE HAVE AN ADDITIONAL SOURCE OF
INFORMATION WE DIDN'T HAVE 15
YEARS AGO AND GROUPS THAT HAVE
MADE RESEARCH PRIORITIES THE
HOSPICE AND PALLIATIVE NURSING
ASSOCIATION HAS JUST COME OUT
ONE WILL THE 2023 TO 2026
RESEARCH PRIORITIES WELL
GROUNDED WITH PARENT ADVICE AS
WELL AND WE HAVE KIND OF A
CONSENSUS ACROSS NATIONAL AND
INITIAL AND RECOMMENDATIONS
COMING TO US FOR PEDIATRIC
PALLIATIVE CARE AND THOUGH THERE
ARE UNIQUE TOPICS WITHIN EACH OF
THOSE, COMMONALITIES ARE
COMMUNITY TRAINING FOR HEALTH
CARE PROFESSIONALS AND DECISION
MAKING AS RESEARCH PRIORITIES
WANTING NEW QUESTIONS TO BE
ASKED ABOUT THOSE TWO IN
PARTICULAR.
THANK YOU.
>> THANK YOU.
>> IT'S AN INCREDIBLY WELCOMING
AND FRIENDLY GROUP OF
RESEARCHERS AND CLINICIANS AND I
WOULD SAY MAKING SURE YOU HAVE A
WIDE ARRAY OF PEOPLE IN YOUR
MENTORSHIP AND CO-INVESTIGATOR
GROUP EITHER PEOPLE THAT YOU
WORK WITH LOCALLY OR PEOPLE YOU
MEET NATIONALLY AND NOT BEING
AFRAID TO REACH OUT TO ANY OF US
OR TO ANYONE IN THE FIELD
REALLY.
PEOPLE ARE SO WELCOMING.
IF THEY ARE NOT IN A POSITION TO
BE ABLE TO HELP YOU OR WORK WITH
YOU, THEY CERTAINLY WILL BE ABLE
TO REFER YOU TO SOMEBODY ELSE
WHO CAN.
>> NICE.
>> AMEN TO THAT.
>> IN THE TIMES OF MY CAREER
WHERE I FELT STRUCK AND WASN'T
SURE HOW TO NAVIGATE A RESEARCH
PROTOCOL FELT THE GRANT I WAS
WRITING WAS BAD OR THE PAPER WAS
NOT COMING TOGETHER, I THINK
WHAT HELPED ME MORE THAN
ANYTHING WAS CENTERING MYSELF IN
SORY TELLING BECAUSE ULTIMATELY
WHAT WE'RE DOING IS TELLING A
STORY ABOUT WHY SOMETHING
MATTERS AND I THINK WE CONNECT
MOST AND IT DIDN'T INCENTIVE US
WE'RE TAUGHT TO BE RIGOROUS AND
EXACTING AND ENCOURAGE FOLKS IF
SOMETHING DOESN'T FEEL RIGHT AND
NOT CLICKING TO NOT MASSAGE YOUR
SCIENTIFIC POINT BUT TO CONTROL,
ALT, DELETE, RESET AND ASK
YOURSELF THE STORY.
HOW CAB I TELL A STORY THAT
MATTERS TO OTHERS AS MUCH AS IT
MATTERS TO ME.
>> THANK YOU SO MUCH.
WHAT INSPIRING WORDS TO END ON.
LASE, PAM, DANIELLE AND ERICA,
THANK YOU AGAIN FOR YOUR TIME
TODAY AND FOR ALL OF THESE
ENCOURAGING AND ENLIGHTENING
WORDS.
AT THIS TIME I AM GOING TO TURN
OVER THE VIRTUAL PODIUM TO
DR. LORI WIENER ON PSYCHOSOCIAL
IMPACT OF PEDIATRIC PALLIATIVE
CARE.
>> THANK YOU SO MUCH.
WHAT A FABULOUS SESSION.
LET ME BEGIN BY ALSO THANKING
DR. OCTOBER AND MAHOMES AND
NICHD FOR THIS IMPORTANT
CONFERENCE AND ERICA YOU
COULDN'T HAVE SET US UP BETTER
ON PSYCHOSOCIAL ISSUES AND THANK
YOU TO OUR PANELISTS WHO HAVE
BEEN ABLE TO HELP INFORM OUR
NEXT SESSION.
ON THE PSYCHOSOCIAL IMPACT ON
PEDIATRIC PALLIATIVE CARE.
WE HAVE KIM MOON E-DOYLE AT THE
UNIVERSITY OF MARYLAND
UNIVERSITY OF NURSING.
THE PROGRAM DESCRIBE THE IMPACT
OF PEDIATRIC SERIOUS ILLNESS ON
FAMILIES, FACTORS SUCH AS SOCIAL
DETERMINATES, THE INFLUENCE OF
CHILD AND FAMILY HEALTH THROUGH
COMMUNITY PARTNERSHIP FOR
INTERVENTION DEVELOPMENT.
TODAY DR. MOONEY'S GOAL WHICH
HAS BEEN TO ENHANCE FAMILY
HEALTH AND FAMILY HEALTH EQUITY
WILL BE TALKING ABOUT FAMILY
IMPACT OF SERIOUS PEDIATRIC
ILLNESS AND WILL BE INTRODUCING
A SPECIAL GUEST TO ADDRESS THE
LIVED EXPERIENCE, JENNIFER
SIDEMAN CO-PRESENTING.
>> THANK YOU.
IT'S AN HONOR TO BE WITH YOU ALL
AND I'M EXCITED TO CO-PRESENT
WITH MS. JENNIER SIEDMAN.
SHE SERVE AS THE PRESIDENT'S OF
BEN'S DREAMED AND CO-AUTHORED
AND RECEIVED NUMEROUS AWARDS FOR
HER WORK.
I'D LIKE TO START WITH THANK
YOUs AND ACKNOWLEDGEMENTS.
WE WANT TO THANK THE CHILDREN
AND FAMILIES WHO OVER THE
DECADES OF PEDIATRIC PALLIATIVE
CARE INSIGHTS HELPED ADVANCE THE
SCIENCE OF PEDIATRIC PALLIATIVE
CARE AND WOULD LIKE TO THANK
DR. OCTOBER FOR CREATING THE
SPACE OF THE SYMPOSIUM AND THE
RESEARCHERS PRESENTING OVER THE
PAST TWO DAYS AND THOSE
ATTENDING AND DOING THE WORK.
WE KNOW IT TAKES A VILLAGE TO
ADVANCE THE SCIENCE AND WANT TO
ACKNOWLEDGE THE FUNDING THAT HAS
CONTRIBUTED TO THE DISCUSSION
WE'LL HAVE TODAY.
FAMILIES ARE A DETERMINATE OF
HEALTH AND WARRANT ATTENTION AND
SUPPORT.
A MOM SHARED A QUOTE THAT STILL
RESONATES WITH ME.
CANCER IS A FAMILY DISEASE AND
PARAPHRASE HER WORDS AND SAY
SERIOUS ILLNESS IS A FAMILY
DISEASE.
WE'D LIKE TO OFFER THIS AS IT
DEMONSTRATES THE RIPPLE A
SERIOUS ILLNESS CAN HAVE AND WE
CAN LOOK AT DIFFERENT
DEFINITIONS OF FAMILY BUT TODAY
WE DEFINE IT AS A GROUP OF
INDIVIDUALS BOUND BY STRONG
EMOTIONAL TIES, A SENSE OF
BELONG AND PASSION FOR BEING
INVOLVED IN ONE ANOTHER'S LIVES.
FAMILY IS ALSO A BASIC
FUNCTIONAL UNIT OF SOCIETY AND
AFFORDS MANY FUNCTIONS SUCH AS
SOCIALIZATION, PROTECTION,
PASSING ON OF CULTURE.
THUS, FAMILIES AND THEIR
CONSTITUENT MEMBERS ARE
POWERFUL.
DESPITE THIS POWER THE IMPACT ON
FAMILIES CAN BE INVISIBLE AND
THEIR FUNCTIONS TAKEN FOR
GRANTED YET FAMILIES FORM THE
BACKBONE OF SERIOUS ILLNESS CARE
AND IMPORTANT RECIPIENTS OF
PALLIATIVE CARE IN THE HOME AND
COMMUNITY.
SO LATS TAKE A LOOK AT THE
NUMBERS FOR A MORE GRANULAR
UNDERSTANDING.
WORLDWIDE, ABOUT 10 MILLION
CHILDREN WOULD BENEFIT FROM
PEDIATRIC PALLIATIVE CARE.
ESTIMATES INDICATE IN THE
U.S. FROM 100 TO 400,000
CHILDREN WOULD BENEFIT FROM
PALLIATIVE CARE.
THEY MAY REQUIRE LIMITED OR
EXTENSIVE CARE AND SUPPORT FOR
THEIR ILLNESS.
IN THE U.S., ABOUT 60% TO 70% OF
THE CHILDREN WHO RECEIVE
PEDIATRIC PALLIATIVE CARE HAVE A
SIBLING.
THESE SIBLINGS ARE ALSO CHILDREN
IN ADD -- ADOLESCENCE AND YOUNG
ADULTS AFFECTED AND GET LESS
TIME WITH PARENTS OR POTENTIALLY
LESS ATTENTION FROM PARENTS AND
THEY SIBLING PERCEIVE POOR
COMMUNICATION ABOUT THE DISEASE
OR CHANGES IN THEIR PERCEIVED
ROLE IN THE FAMILY.
SIBLINGS OFTEN REFRAME THEIR
ROLE WITHIN THE FAMILY AND
PROVIDE SUPPORT AS A PLAYMATE OR
PERHAPS WITH THE PASSAGE OF TIME
CAREGIVERS TO THEIR SERIOUSLY
ILL BROTHER OR SISTER.
THEY EXPERIENCE IMPACTS FROM
SHIFTS IN ATTENTION, ALTERATIONS
TO THEIR NORMAL ROUTINE AND THE
ABSENCE OF A PLAY MIGHT OR
CONFIDANT.
THE AMOUNT OF WORK PARENTS DO
CAN BE INVASIVE IN DAILY LIFE
AND PROVIDE MANY HOURS OF CARE
PER WEEK AND SIMULTANEOUSLY MANY
FACE MOUNTING FINANCIAL
DIFFICULTIES AND MUST SPEND A
GREAT DEAL OF TIME COORDINATING
CARE AND INTERACTING WITH
BUREAUCRACIES TO ENSURE THE
PROPER CARE OF THEIR CHILD AND
DEAL WITH THEIR OWN EMPLOYMENT
AND CONTEND WITH OTHER FAMILY
RELATIONSHIPS SUCH AS THOSE WITH
THEIR PARTNER AND THEIR HEALTHY
CHILDREN.
WE SEE A PICTURE EMERGE OF
FAMILIES WHO STRUGGLE WITH
ILLNESS MANAGEMENT AND CARE OF
THEIR FAMILY AND LIFE BEYOND THE
ILL PENN STATE.
-- ILLNESS.
DR. YU WILL PROVIDE AN IN DEPTH
LOOK AT THE PARENTS'S ROLE.
I'D LIKE TO SHARE A PHOTO SHARED
WITH ME ON PARENT AND SIBLING
PERSPECTIVES ON FAMILY
COMMUNICATION.
WHEN ASKED WHAT WAS IMPORTANT TO
TALK ABOUT IN DAILY LIFE ONE MOM
SHARED, IT CAN ALL BE SO MUCH
SOMETIMES.
THERE'S ALL THE LITTLE PIECES TO
MANAGE AND THEY GET TO BE SO
MUCH AND THEN THINGS FEEL LIKE
THEY START TO CRACK AND YOU CAN
SEE THAT ILL STRAIGH-- ILLUSTRA
THE SMALL THINGS WITH THE CRACK
ON IT.
THERE'S A RICH EVIDENCE BASE OF
PARENTS' OVER ALL EXPERIENCES IN
CARING FOR A CHILD WITH ILLNESS
AND THIS IS CONCEPTUALIZED WITH
BEING A LOVING PARENT AND
INTENSE PARENTING OR PARENTING
CONCEPTUALIZED AS THE ORDINARY
WORK IN THE CONTEXT OF THE
EXTRAORDINARY.
OUR NEXT WAVE OF PEDIATRIC
PALLIATIVE CARE RESEARCH CAN
FOCUS ON WHAT TO DO ABOUT THE
IMPACT.
WITNESSING A CHILD SUFFERING CAN
INSTIGATE PARENTAL STRESS AND
POWERLESSNESS AND PARENTS
EXPERIENCE DISTRESS WHEN THEY
ASK THE IMPACT AND DISRUPTION TO
THE FAMILY UNIT.
PARENTS DERIVE COMFORT FROM
BEING IN PHYSICAL AND EMOTIONAL
PROXIMITY TO ALL THEIR CHILDREN.
SMALL SUFFERING IS DESCRIBED AS
THE EVERYDAY EVENTS AND DECISION
POINTS OF ILLNESS MANAGEMENT AND
FAMILY LIFE THAT CAN BRING ABOUT
DISTRESS.
SMALL SUFFERING IS A HELPFUL WAY
TO UNDERSTAND THE LOGISTIC
CHALLENGES, HURDLES AND TIME
TASKS PARENTS CONTEND WITH AS
WELL AS THE PAIN FROM DAY IN AND
DAY OUT DECISIONS THAT PARENTS
HAVE TO CONTENT WITH SUCH AS NOT
BEING ABLE TO ATTEND ONE CHILD'S
SPORTING EVENT BECAUSE OF
CAREGIVING NEEDS OR HAVING TO
LEAVE THE BEDSIDE OF A
HOSPITALIZED CHILD TO GO TO WORK
OR CARE FOR SIBLINGS AT HOME.
IMPORTANT TO CONSIDER MOVING
FORWARD IS THE SPIRITUAL AND
EXISTENTIAL IMPACTS OF CARING
FOR A SERIOUSLY ILL CHILD.
SUCH DISTRESS CAN CONTINUE IN
THE DIAGNOSTIC ODYSSEY AND
CONTINUE THROUGH BEREAVEMENT
PARENTS MAY EXPERIENCE
POWERLESSNESS, DREAD, LOSS OF
CONTROL OR MORAL DISTRESS.
I'LL TURN THE FLOOR OVER TO
JENNIER.
>> I WANT TO SAY THANK YOU FOR
ALLOWING ME TO PRESENT TODAY.
I DO REALLY FEEL LIKE I'M IN A
ROOM OF WHO'S-WHO.
AT CPN WE READ ALL OF YOUR
PAPERS WITH GREAT INTEREST AND I
CERTAINLY HAVE LEARNED A LOT
DURING MY TIME BUT I'M HERE
TODAY TO REALLY SPEAK TO YOU AS
THE PARENT OF THREE.
THESE ARE MY THREE CHILDREN.
BENJAMIN WOULD BE ON THE SCREEN
ON THE LEFT AND MY DAUGHTER
ISABEL IN THE MIDDLE AND OLDEST
SON NOAH ON THE RIGHT.
AS WE HEARD TODAY AND AS KIM
SPOKE ABOUT WE KNOW PARENTS WANT
TO FEEL THEY'VE BEEN A GOOD
PARENT TO ALL THEIR CHILDREN.
AND YOU KNOW AND YOU ALL KNOW
THAT DEFINITION BECOMES
PARTICULARLY HARD WHEN HAVE YOU
A MEDICALLY COMPLEX CHILD
BECAUSE THERE IS NO LANDSCAPE TO
UNDERSTAND THAT THAT IS
PREDICTABLE.
WHAT I WANTED TO SPEAK TO YOU
MOSTLY ABOUT TODAY IS HOW
DIFFICULT AND HOW TRUE THAT IS
FOR THE WELL CHILDREN, FOR THE
SIBL
SIBLINGS.
THERE'S NO WHAT TO EXPECT WHEN
YOU PARENT THE SIBLINGS OF A
CHILD WITH MEDICAL COMPLEXITY.
AND THERE'S LITTLE GUIDANCE ON
WHERE TO TURN TO FIND THE HELP
YOU NEED.
MANY PARENTS AT CPN TELL US THEY
TRY TO LEAN INTO THEIR
PEDIATRICIAN TO GET THE GUIDANCE
FOR THEIR WELL CHILDREN BUT
REALIZE OVER TIME MANY
PEDIATRICIANS SIMPLY DON'T HAVE
THE EXPERIENCE TO PROVIDE THE
LEVEL OF GUIDANCE THEY'RE
SEEKING EVEN AS THEY ARE THE
CONSISTENT MEDICAL SUPPORT FOR A
FAMILY.
IN MY OWN PERSONAL EXPERIENCE
INTRINSICALLY I WANTED NOAH AND
ISABELL TO FEEL WHAT WAS
HAPPENING TO THEIR BROTHER WAS
HAPPENING WITH THEM NOT TO THEM.
THOSE ARE TWO SMALL WORDS BUT
MAKE A SIGNIFICANT DIFFERENCE IN
THE WAY THE FAMILY DYNAMIC
HAPPENS.
HOW TO ENSURE HOW THEY FELT
THINGS WERE HAPPENING WITH THEM
AND NOT TO THEM WASN'T ALWAYS
CLEAR AS THE PARENT AND OFTEN
CAUSED ME TO EXTREME DISTRESS
AND I'D LIKE TO SHARE WITH YOU
ONE EXAMPLE OF THAT.
THIS WORRY OF HOW TO INCLUDE MY
OTHER TWO CHILDREN BECAME
INTENSE WHEN BEN AND HIS TEEN
YEARS AND PROGRESSED IN HIS
DISORDER AT THIS POINT DEVELOPED
A 70% CURVE OF HIS SPINE.
WE WERE FACED WITH THE DECISION
WHETHER OR NOT TO FUSE HIS
SPINE.
BY THEN I HAD BECOME A FAIRLY
COMPETENT MEDICAL DECISION
MAKER.
WE LIVE IN THE BOSTON AREA.
BOTH MY HUSBAND AND I ARE WELL
EDUCATED.
WE UNDERSTOOD THE DISEASE
TRAJECTORY VERY WELL AND WERE
VERY KNOWLEDGEABLE ABOUT EVEN
THE RESEARCH SCIENCE COMING DOWN
THE PATH.
I HAD DEVELOPED A SENSE I WOULD
COULD BE A CONFIDENT DECISION
MAKER WHEN IT CAME TO THE
MEDICAL DECISIONS FOR MY SON.
WHAT I FELT INCOMPETENT IN WAS
MY ABILITY TO PARENT TO LET THE
SIBLINGS KNOW WHETHER MY
DECISION WAS MADE WITH THEM.
THE SURGERY HAD THE POTENTIAL TO
CHANGE OUR LIVES IN A DRASTIC
WAY.
MY SON DID NOT HAVE A FEEDING
TUBE AND WOULD MEAN IT HE WOULD
HAVE TO HAVE ONE IN ORDER TO
HAVE THE SURGERY.
IT MAY MEAN AT THIS POINT IN HIS
DISEASE HE COULD END UP IN A
TRACHEOSTOMY AND CHANGE OUR HOME
AND THE CHANCE HE WOULD NOT BE
ABLE TO SURVIVE THE SURGERY.
BOTH IN THEIR TEENS, I KNEW I
WANTED TO FIND A WAY TO MAKE
THIS DECISION THAT INCLUDED MY
WELL CHILDREN BUT DIDN'T MAKE
THEM BURDENED WITH THE THINGS I
KNEW THAT MIGHT COME WHICH WAS
NOW I KNOW GUILT AND REGRET.
I JUST DIDN'T KNOW HOW AND WENT
TO MY G.I. DOCTOR TO DISCUSS THE
POTENTIAL OF A FEEDING TUBE AND
MENTIONED THIS INTENSE DECISION
AND AT THAT POINT BEN WAS ABOUT
14 A REFERRAL TO PEDIATRIC
PALLIATIVE CARE WAS MADE FOR MY
FAMILY.
THIS ALONE IS REMARKABLE BUT I'M
NOT HERE TO TALK ABOUT THAT
TODAY.
IT MADE A BIG DIFFERENCE IN OUR
LIVES.
I REMEMBER WHEN PAT O'MALLEY OUR
PEDIATRIC PALLIATIVE CARE
PROVIDER CAME TO OUR HOUSE AND
WE TALKED ABOUT HOW TO INCLUDE
HIS SIBLINGS IN THE LANGUAGE AND
HELP THE FAMILY FEEL THE
DECISION WAS MADE AS A UNIT.
IT WASN'T UNTIL I HAD ALL THE
WORDS IN CHECK MY HUS BEHIND --
HUSBAND AND I BROUGHT OUR
ATTENTION TO THE SIBLINGS AND A
STUDY REVEALED PARENTS WITH
OTHER CHILDREN RATE THE DOMAIN
PHYSICAL AND EMOTIONAL CARE AS A
HIGH PRIORITY.
TWICE AS IMPORTANT AS FAMILIES
WITHOUT OTHER CHILDREN BUT FIFTH
IN OVER ALL PRIORITY.
I DON'T THINK THIS -- THIS
DOESN'T SURPRISE ME AND SURE IT
DOESN'T SURPRISE ANY OF YOU BUT
WHEN WE LOOK AT CARRYING FOR THE
SERIOUSLY ILL CHILD, WE CAN'T
NOT LOOK AT CARING FOR THE
MEMBERS AROUND THEM.
THE PARENTS AND INCLUDING THE
SIBLING.
>> THINKING ABOUT THAT AND
FOCUSSING ON THE IMPACT OF
SERIOUS PEDIATRIC CARE ON
SIBLINGS, REMEMBER SIBLINGS ARE
CHILDREN TOO AND WE NEED TO TAKE
THEIR NEEDS AND CONCERNS
SERIOUSLY.
I'D LIKE TO START BY SHARING A
PHOTO OFFERED BY A SIBLING IN
THE SAME PHOTO VOICE PROJECT
WHEN I ASKED WHAT WAS HARD TO
TALK ABOUT RELATED TO HER
SIBLING'S ILLNESS SHE SAID I
TOOK A PICTURE OF MY LACROSSE
CLEATS BECAUSE I'M AN ATHLETE.
SOMETIMES I WANT TO BE
RECOGNIZED AS MYSELF AND NOT THE
SISTER OF.
SIBLINGS ARE POWERFUL AND OFFER
WINDOWS INTO FAMILY HEALTH.
THEY SHAPE OTHER SIBLING'S
BEHAVIORS DURING EVERY DAY
INTERACTIONS, SERVE AS SOCIAL
SUPPORT AND ACT AS ROLE MODELS.
LESS ATTENTION HAS BEEN PAID TO
THE WAY SIBLINGS ACT AS THE
BUILDING BLOCKS OF THE FAMILY
STRUCTURE AND THROUGH THE RIPPLE
AFFECTS OF THEIR BEHAVIOR
THROUGH THE FAMILY SYSTEM.
SIBLINGS OF THOSE WITH SERIOUS
ILLNESS FACE CHALLENGES AND
THERE'S BEEN IMPORTANT WORK ALSO
DONE IN SIBLINGS OF THOSE WITH
RARE DISEASE.
SIBLINGS OF KIDS WITH RARE
DISEASE REPORT WORSE QUALITY OF
LIFE AND DISPARATE OUTCOMES AND
EXPERIENCE ANXIETY, DEPRESSION,
SUBSTANCE USE, ACADEMICS
CHALLENGES AND EMOTIONAL
DISTRESS.
25% MEET CRITERIA FOR PTSD AND
OVER HALF REPORT MODERATE TO
SEVERE DISTRESS AND EXPERIENCE
ANGER, FEAR, UNCERTAINTY AN
INCREASE WITH THE INVASIVENESS
OF EVERYDAY MANAGEMENT AND THE
GREATER LIFE THREAT TO THE
SERIOUSLY ILL CHILD.
THEY ALSO RECOGNIZE MEG --
NEGATIVE PATTERNS, LAPSE OF
COMMUNICATION OR EXCLUSION FROM
DISEASE RELATED TO DISCUSSIONS.
YET THERE'S LIMITED
INTERVENTIONS THAT EXIST TO
SUPPORT SIBLINGS IN THOSE THAT
DO EXIST HAVE VARIABLE
EFFECTIVE.
-- EFFECTIVENESS.
THESE GAPS CAN STRAIN FAMILY
RELATIONSHIPS AND INCREASE
DISTRESS AND DIMINISH OVER ALL
WELL BEING.
TAKEN TOGETHER WE SEE SIBLINGS
EXPERIENCE INTRAPERSONAL AFFECTS
WHEN THEY'RE BROTHER OR SISTER
IS SERIOUSLY ILL.
UNDERSTANDING WAYS TO PROMOTE
THE HEALTH OF THE FAMILY UNIT
CAN HAVE CASCADING EFFECTS ON
SIBLING WELL BEING.
>> THESE QUOTES ILLUSTRATE ALL
OF WHAT KIM JUST SPOKE ABOUT AND
COLLECTIVELY REPRESENT MUCH OF
WHAT WE HEAR FROM PARENTS AND
SIBLINGS WHO CREATED TO CREATE
THE NETWORK IN THEM YOU'LL HEAR
THEMES OF PERFECTIONISM AND FEEL
THEY MUST COMPENSATE FOR THE
SPECIAL NEEDS AND SET
UNREALISTIC HIGH EXPECTATIONS AN
MANY FEAR GUILT AND WORRY ABOUT
ASKING THEIR OVER BURDENED
PARENTS FOR TIME AND ATTENTION
MAKING THEM FEEL LIKE THEY'RE
INVISIBLE AND SEVERAL SIBLINGS
WILL EXPRESS ANGER OVER THE
CHILDHOOD THINGS THEY MISS OUT
ON.
FOR ME THE QUOTE THAT
REVERBERATES IS IS CAYLA AND 10
YEARS AFTER MY SON'S DEATH THIS
DYNAMIC STILL AFFECTS MY FAMILY.
RECENTLY IN THERAPY, MY OLDEST
WHO JUST TURNED 30 REMARKED OUR
FAMILY NEVER HONED THE SKILL OF
DOING SOMETHING FOR FUN WITHOUT
WORRY OR CONSEQUENCE.
WE APPROACH EVERY ACTIVITY AS A
PROBLEM TO SOLVE WITH HIGH
STAKES.
THESE DON'T GO AWAY WHEN
CHILDREN OF SIBLINGS OF RARE
DISEASE GROW UP AND I HAVE A
CHILD WHO SUFFERS FROM ANXIETY
AND MY YOUNGEST IS AN OVER
ACHIEVER.
IF SHE THROWS A DINNER PARTY IT
LOOKS LIKE SOMETHING FROM A
MARTHA STEWART MAGAZINE AND I'M
SURE SHE COMES TO SOME OF THOSE
FIELD NATURALLY AS MY SON WITH
ANXIETY BUT I WONDER SINCE WE
WERE REFERRED TO PEDIATRIC
PALLIATIVE CARE SO LATE UP OUR
JOURNEY HOW MUCH THAT WOULD HAVE
CHANGED IF THE SUPPORT AND HELP
HAD COME EARLY.
I ALSO WANT TO POINT OUT MY WORK
AT COURAGEOUS PARENTS NETWORK I
INTERACT WITH MANY SIBLINGS MANY
WHO ARE ADULT.
I SEE THE COMMON TRAITS AND I'M
EXCITED TO SEE THERE'S NOW
INTEREST IN RESEARCHING MORE OF
WHAT CAN BE DONE TO SUPPORT THE
FAMILIES BY SUPPORTING THE
SIBLINGS.
>> THANK YOU, JENNIFER.
I'D LIKE TO PULL THE LENS BACK A
BIT TO LOOK AT THE IMPACT ON THE
FAMILY UNIT.
FAMILY PROCESSES SUCH AS FAMILY
FUNCTION, FAMILY COMMUNICATION,
FAMILY MANAGEMENT OF THE SERIOUS
ILLNESS ARE IMPORTANT TO STUDY
IN PEDIATRIC PALLIATIVE CARE
BECAUSE OF THE PROFOUND IMPACT
FAMILY MEMBERS HAVE ON ONE
ANOTHER.
THEY'RE IMPORTANT FOR OUR
RESEARCH BECAUSE THEY WILL OFTEN
CONTINUE BEYOND THE TIME PART OF
THE FAMILY'S JOURNEY AND
PREVENTION SAY DOWN TREATMENT
EFFECT.
THIS DESCRIBES THE
INTERRELATEDNESS OF PARENTS AND
CHILDREN.
FAMILY PROCESS CAN IMPACT CHILD
WELL BEING AND ADAPTATION.
THREATS TO FAMILY MEMBER'S WELL
BEING CAN IMPACT INDIVIDUALS AND
OUTCOMES OF THE UNIT.
SIBLINGS AND PARENTS CAN
CONTRIBUTE TO DISPARATE OUTCOME
COMPARED TO UNAFFECTED FAMILIES.
IF PARENTS ARE STRESSED ABOUT
FINANCES IT CAN REVERBERATE AND
IMPACT RELATIONSHIP WITH THEIR
PARTNER AND ABILITY TO ENGAGE OR
ENERGY TO ENGAGE WITH THE
SIBLINGS.
PARENTS RECOGNIZE THIS AND WANT
SUPPORT.
WE ALSO RECOGNIZE WHAT PARENTS
WANT TO DO FOR ALL THEIR
CHILDREN MAY NOT MATCH WHAT
THEY'RE ABLE TO DO AND THIS CAN
CAUSE DISTRESS.
PALLIATIVE CARE TO DATE LESS
OFTEN EXPLORED FAMILY PROCESSES
AND WE NEED THIS TO DEVELOP
FAMILY-FOCUSSED INTERVENTIONS
AND SUPPORTIVE POLICIES TO
IMPROVE FAMILY HEALTH.
SUCH WORK WOULD PROVIDE AN
OPPORTUNITY TO BUILD ON A
FAMILY'S STRENGTHS.
I HAVE THE GOOD FORTUNE TO BE
PART OF A SCOPING REVIEW TEAM TO
LOOK AT THE PEED -- PEDIATRIC
PALLIATIVE CARE TO LOOK AT HOW
THE WAS BEING DONE.
WE FOUND FAMILY WAS NOT
SYSTEMATICALLY DEFINED BUT
INCLUDED FAMILY EXPERIENCE FROM
THE PARENT POINT OF VIEW, LESS
OFTEN THE SERIOUSLY ILL CHILD OR
SIBLING.
AND THIS WAS FOCUSSED ON THE
EXPERIENCE OR NEGATIVE-POSITIVE
PSYCHOSOCIAL OUTCOMES AND ONLY
15% OF THE ARTICLES FOCUSSED ON
FAMILY PROCESSES.
EVEN LESS ON THE IMPACT TO OF
SOCIAL DETERMINATES OF HEALTH.
I'LL TURN IT OVER TO JENNIFER.
>> WHEN PARENTS COME TO AN
APPOINTMENT FOR THEIR MEDICALLY
COMPLEX KID THEY COME WITH THE
WORRIES, FAMILY DYNAMICS, LIFE
REALITIES.
AS KIM'S COG IMAGE IL STRAITED
YOU CAN'T SEPARATE THE PARTS
FROM THE WHOLE.
SO CARING FOR THE SERIOUSLY ILL
CHILD MEANS CARING FOR THE
PARENT AND ANYONE ELSE WHO LIVES
IN THE FAMILY.
AND THIS LEADS TO A
DIFFERENTIATION IN THE LIFE
STYLES THAT NEEDS TO BE
ACKNOWLEDGED IN OUR CARE.
TENDING TO THE ILL CHILD MEANS
SEEING AND TENDING TO EACH
MEMBER OF THE FAMILY.
THIS SLIDE REPRESENTS RESPONSES
OF PARENTS GAVE WHEN ASKED TO
STATE IN ONE WORD A CONCERN OR
OBSERVATION THEY HAD ABOUT THEIR
WELL CHILDREN, THE SIB LINGDZ.
-- SIBLINGS.
LATER IN A PANEL OF SIBLINGS, I
ASKED EACH SIBLINGS TO CHOOSE
AND RESPOND TO A WORD IN THIS
LIST.
THE WORDS THEY CHOSE INCLUDED
NEGLECT, PERFECTIONISM,
LONELINESS, ANXIETY AND
PRESSURE.
THEY ALSO CHOSE RESILIENCE AND
EMPATHY AND THESE ARE THE THINGS
THEY HAVE GAINED EVEN AS WE
WORRY ABOUT THE OTHER THINGS
THAT ARE PROBABLY FOLLOWING THEM
ALONG THEIR PATH.
I KNOW THE FAMILIES OF THE
PARENTS OF THE PANEL WERE
SUPPORTED BY PALLIATIVE CARE AND
EACH SIBLINGS COMMENT ON THE
DIFFERENCE THE SUPPORT MADE IN
THE FAMILY.
AND THREE OF THE FOUR NOTED HOW
MUCH SUPPORT BEFORE TALKING
ABOUT THE SUPPORT BY THE SIBLING
AND THAT'S TELLING.
MY OWN CHILDREN HAVE REMARKED
HOW PAT O'MALLEY GAVE THEM
SUPPORT ESPECIALLY AS BEN WAS
DYING.
AND HELPED THEM FEEL AS THOUGH
THEY'VE BEEN A GOOD SIBLING TO
BEN BECAUSE THEY'RE ALSO TRYING
TO FIGURE THAT OUT EVEN NOW IN
THEIR ADULTHOOD.
I KNOW THE SUPPORT THEY GAVE ME
THOUGH IT WAS LATE HELPED MY
HUSBAND AND I FEEL WE'VE BEEN A
GOOD PARENT TO BEN AND HELPED US
FEEL WE'VE BEEN A BETTER PARENT
THAN WE MIGHT HAVE NOT BEEN TO
NOAH AND ISABELLE AND WE SAY AT
CPN THE BETTER THE BEFORE, THE
BETTER THE AFTER AND AS I SAID
BEFORE, I CAN SEE SOME OF THE
SAME WORDS PLAYING THEMSELVES
OUT IN MY ADULT CHILDREN'S
LIVES.
>> ALIGNS WELL WITH OUR NEXT
STEP INTO THINKING ABOUT HOW
FAMILY HEALTH ALIGNS WITH
NICHD'S RESEARCH PRIORITIES.
.
WE BELIEVE A CLEAR FOCUS AND
PRIORITIZATION OF FAMILY HEALTH
FITS WELL AND AS JENNIFER
MENTIONED, THE BETTER THE BEFORE
THE BETTER THE AFTER.
ATTENDING TO THE FAMILY HEALTH
DURING SERIOUS ILL, MAY IS HELP
MAY HELP SUPPORT FAMILIES.
SINCE MANY KIDS LEAVING WITH
SERIOUS ILLNESS ARE LIVING
LONGER NEED TO TRANSITION TO
HEALTH CARE.
WHAT ARE THE EXPERIENCES OF
SIBLINGS WHO IN THE MIDST OF THE
TRANSITION IN THE HEALTH CARE
SYSTEM ALSO EXPERIENCE
TRANSITION WITHIN THEIR FAMILIES
AND BECOME CAREGIVERS.
AND TIMELY THE PED CRITICAL CARE
BRANCH NOTED THE BIOETHICS
RELATED TO SERIOUS ILLNESS CARE
AND SUGGEST THE FOCUS ON
BIOETHICS CAN IMPROVE THE
THREE-FOOT RELATIONSHIP VIEW AND
BIRD'S EYE VIEW TO INTERROGATE
OUR APPROACHES TO CARE AND
INSTITUTIONAL MODELS OF CARE
PERPETUATE DISPARITY OR
CONTRIBUTE TO FAMILY AND CHILD
SUFFERING.
FINALLY WE'D LIKE TO WRAP UM
WITH RECOMMENDATION FOR THE
RESEARCH AGENDA.
WE'D LIKE TOS FOR THE
RESEARCH AGENDA.
WE'D LIKE TO WE'D LIKE TO
SUGGEST FAMILY HEALTH IS INCLUDE
IN THE STRATEGIC PLAN AND THIS
IS OUR CHANCE TO IMPACT SCIENCE
POLICY AND HAVE A CLEAR CALL AND
EMPHASIS ON FAMILY HEALTH.
WE'D LIKE TO ATTEND TO EQUITY
AND THE IMPACT OF SOCIAL
DISTANCES OF HEALTH AND THEY ARE
INFLUENCED BY THE SOCIAL
DETERMINATES OF HEALTH.
AND WE NEED TO ATTEND TO THE
STRUCTURAL FACTORS THAT IMPACT
EQUITABLE CARE FOR CHILDREN AND
THEIR FAMILY AND IMPACT THEIR
ABILITY TO RECEIVE SERVICES THAT
ENHANCE THEIR COMFORT AND WELL
BEING.
WE NEED TO ATTEND TO THE
INTERRELATEDNESS TO INDIVIDUAL
FAMILY MEMBERS AND THE UNIT BY
AMPLIFYING THE VOICES OF ALL
YOUTH AFFECTED BY SERIOUS
ILLNESS AND THE VOICES OF
MINORITIZED FAMILY MEMBERS AND
THINK WITH THE DEVELOPMENT
TRAJECTORY OF THE FAMILY AND
WHAT SIBLINGS THAT DIFFERENT
DEVELOPMENT STAGES MAY NEED
BECAUSE THERE'S A LACK OF
RESEARCH ABOUT THE YOUNG
SIBLINGS AND PARENTS AT THE
EARLY FAMILY STAGES.
AND WE WANT TO CALL FOR
ENCOURAGEMENT AND SUPPORT FOR
INVESTMENTS IN PARTNERSHIPS AND
EMPHASIZING PARTNERSHIPS WITH
FAMILIES AND COMMUNITIES LIVING
WITH SERIOUS ILLNESS TO ADVANCE
OUR SCIENCE AND MOVE THE NEEDLE
UP AND EMBRACE INDIGENOUS
RESEARCH METHODS, QUALITATIVE
METHODS, WHICH I WAS GLAD TO
HEAR ABOUT AND COMMUNITY-BASED
PARTICIPATORY RESEARCH HELPING
MAKE WEAVES FOR RESEARCH IN
PEDIATRIC PALLIATIVE CARE.
WE WOULD LIKE TO THANK YOU FOR
YOUR TIME AND SHARING THIS EVENT
WITH US.
THANK YOU.
>> THIS FOR BEAUTIFUL
PRESENTATION AND WE'LL HAVE TIME
FOR QUESTIONS AND ANSWER.
NEXT WE'LL TURN OVER TO OUR NEXT
SPEAKER WHO IS DR. JUSTIN YU.
HE'S IN INTERNAL MEDICINE AND
HOSPICE AND PALLIATIVE CARE
MEDICINE AND WORKS AT CHILDREN'S
HOSPITAL OF PITTSBURGH AND
FOCUSES ON THE IMPROVING THE
HEALTH AND WELL BEING OF
CHILDREN WITH MEDICAL COMPLEXITY
AND PALLIATIVE CARE INTERVE
INTERVENTIONS.
HE IS CONDUCTING SEVERAL
OBSERVATIONAL STUDIES EXAMINING
THE EXPERIENCES OF CHILD'S CARE,
REPORTED PHYSICAL AND MENTAL
HEALTH AMONG CAREGIVERS AND
LEVEL OF DISTRESS AMONG
CAREGIVERS.
AND TODAY HIS TOPIC WILL ADDRESS
THE CAREGIVER IMPACT OF
PEDIATRIC PALLIATIVE CARE AND
SERIOUS ILLNESS.
WELCOME, DR. YU.
THANK YOU FOR BEING HERE.
>> THANK YOU SO MUCH FOR
INVITING ME.
I'M HONORED TO SPEAK.
I THINK MY TALK WILL BE
COMPLIMENTARY TO THE PREVIOUS
TALK.
AND TO GIVE MORE CONTEXT ABOUT
MYSELF.
I'M JUNIOR FACULTY AT THE
UNIVERSITY OF PITTSBURGH.
I WORK WITH PALLIATIVE CARE AND
SUPPORT TEAM AND MOST IS
IN-PATIENT CARE BUT CARE FOR
PATIENTS IN THE HOME HOSPICE
SETTINGS AND FROM THE CLINICAL
SETTING I STILL WORK WITH ADULTS
AND I DO THINK IT'S WORTH
HIGHLIGHTING THAT THE WORK I'VE
BEEN DOING IS MADE POSSIBLE WITH
THE SUPPORT FROM THE NATIONAL
PALLIATIVE CARE RESEARCH CENTER
AND THE UNIVERSITY OF PITTSBURGH
SCIENCE INSTITUTE AMONG AND THE
FAMILY WELL BEING RESEARCH
NETWORK AS WELL AS PHILANTHROPIC
SUPPORT AND TO GIVE ADDITIONAL
CONTEST, TO TELL YOU ABOUT
MYSELF, I'M MARRIED AND HAVE
PETS BUT I THINK IT'S IMPORTANT
TO HIGHLIGHT I DON'T HAVE
CHILDREN.
SO I ENCOURAGE PEOPLE TO TAKE
ANYTHING I SAY AND MY INFERENCES
I TAKE FROM MY RESEARCH WITH A
GRAIN OF SALT UNTIL I HAVE
CHILDREN OF MY OWN BUT I'M
PART-TIME FAMILY CAREGIVER AN
HELPING CARE FOR MY DAD WITH
ADVANCED DEMENTIA IN
PHILADELPHIA.
THE OLD ADAGE OF RESEARCH OF
RESEARCH APPLIES HERE.
I'LL TAKE A COUPLE MINUTES TO
DRILL DOWN ON PEDIATRIC
PALLIATIVE CARE CAN GIVE A
REVIEW OF WHAT I THINK WE KNOW
ABOUT THESE CAREGIVERS AND MY
OPINIONS AND SPECULATIONS ABOUT
POTENTIAL FUTURE DIRECTION AND
RESEARCH OPPORTUNITIES.
IN A CLINICAL PERSPECTIVE
PRACTICING PEDIATRIC PALLIATIVE
CARE AND THOSE CHILDREN WITH
SERIOUS ILLNESS AND CANCER TO
ORGAN TRANSPLANT AND CHILDREN
AND FROM A RESEARCH AND
CAREGIVER STANDPOINT, I DO THINK
WE JUST NEED TO BE EXPLICIT AND
EMPHASIZE THE FOCUS OUR SUPPORT
OR RESEARCH OF CAREGIVERS AND
RESEARCHERS OF CHILDREN NOT TO
GET WITH THE TERMINOLOGY BUT
CHRONIC HEALTH CONDITIONS AND
I'LL USE THE TERM CHILDREN WITH
MEDICAL COMPLEXITY BUT I DO
THINK OTHER CONDITIONS SUCH AS
HEALTH CARE NEEDS ALL APPLIES.
AND IT'S CHILDREN WHO HAVE
CHRONIC AND SEVERE HEALTH
CONDITIONS WHO IMPACT MULTIPLE
ORG JON SYSTEMS AND THE NEED FOR
ASSISTANCE WITH DAILY ACTIVITY
AND AN OVER REPRESENTATION OF
CHILDREN WITH SEVERE IMPAIRMENT
WHO UTILIZE TECHNOLOGY.
I'M SUMMARIZING WHAT A LOT OF
OUR SPEAKERS TODAY AND YESTERDAY
TALKED ABOUT BUT I WANT TO GO
OVER A FEW POINTS WORTH R
RE-EMPHASIZING.
CHILDREN WITH MEDICAL COMPLEXITY
ARE AT RISK FOR THE POOREST
HEALTH OUTCOME, MORTALITY AND
UNMET NEEDS AND ALSO INCLUDES
THINGS IN MATERIALS OF LOW
SATISFACTION WITH CARE.
COMPLICATIONS WITH PROCEDURES OR
INFECTIONS, UNTREATED SYMPTOMS
OF PATHOLOGY, SIDE EFFECTS.
I ALSO THINK WE SHOULD
RE-EMPHASIZE THEY HAVE IMPACT ON
PEDIATRIC HEALTH SYSTEMS.
WE SEE NUMBERS FROM FOLKS ON THE
CALL OR ON THE WEBINAR THAT
CHILDREN WITH MEDICAL COMPLEXITY
ACCOUNT FOR ONE-THIRD OF ALL
PEDIATRIC HEALTH EXPENDITURES
AND HALF THE CHILDREN HOSPITALS
AND PATIENT-RELATED COSTS.
I THINK IT'S WORTH HIGHLIGHTING
THESE NUMBERS ARE FROM
STUDIES -- DON'T QUOTE ME ABOUT
10 YEARS OLD AND THERE'S NO
TRENDS OR EVIDENCE I'M AWARE OF
TO SUGGEST THE NATIONAL'S GOTTEN
SMALLER.
IF ANYTHING IT'S PROBABLY
SIGNIFICANTLY INCREASED.
TO ME, JUST AS IMPORTANT AS THE
FINANCIAL IMPLICATIONS, ARE THE
IMPLICATIONS ON THE OPERATIONAL
CAPACITIES OF PEDIATRIC HEALTH
SYSTEMS.
HERE I, THINK THIS PERSONAL
ANECDOTE IS PROBABLY TRUE.
IN 2016 AND WE LOOKED AT
MEDICALLY COMPLEX CHILDREN AND
HALF CONSISTENT OF CHILDREN WITH
MEDICAL COMPLEXITY FOR PROLONGED
HOSPITAL STAYS FROM OVER TWO
WEEKS TO MONTHS AT A TIME.
AND I WAS LOOKING AT THE DYNAMIC
WAS TRUE.
AND OUR CARE CENTER THERE IS
RELATIVELY NEW BUT EVEN
WESTBOUND THE PAST TWO YEARS
THEY'VE HAD TO PUT PAUSES ON
ACCEPTING NEW REFERRALS DUE TO
CAPACITY ISSUES.
I THINK IT REFLECTS THE
MEDICALLY COMPLEX CHILDREN ARE
ONE OF THE FASTEST GROWING
PEDIATRIC POPULATION IN THE
COUNTRY.
A FEW YEARS AGO MY MENTOR AND
FROM THE NATIONAL SURVEY OF
CHILDREN'S HEALTH IT'S NOT
PERFECT BUT AT THE END OF THE
DAY IT'S GOOD ENOUGH AND IF
ANYTHING IT UNDER ESTIMATES THE
COMPLEXITY OF MEDICALLY
UNADDRESSED CHILDREN AND SHOWED
ABOUT 1% OF THE PEDIATRIC
POPULATION NOW CONSISTS OF
MEDICALLY COMPLEX CHILDREN AND
ACCOUNTS FOR ABOUT 1.2 MILLION
CHILDREN.
THAT'S A ROUGH DOUBLING IN THE
LAST DECADE AND 17,000 CHILDREN
ARE DIAGNOSED EACH YEAR WITH
CANCER AND 40,000 ADULTS ARE
LIVING WITH CYSTIC FIBROSIS AND
TO HAMMER HOME SOMETHING
ROSENBERG MENTIONED YESTERDAY,
CLINICIAN SCIENTISTS FOCUSSED ON
IMPROVING THE CARE AND HEALTH
AND QUALITY OF LIVES OR IN THESE
CHILDREN AND FAMILIES, WE DON'T
HAVE A CLEAR RESEARCH HUB.
HOPEFULLY THIS CAN START A NEW
TIDE.
SO WHY ARE FAMILY CAREGIVERS
RELATIVE TO THE NICHD?
HERE TO ADD A FEW POINTS TO
KIM'S TALK.
ONE, THOSE CHILDREN EVEN IF THEY
HAVE A LOT OF HEALTH CARE NEEDS
SPEND THE VAST MAJORITY OF TIME
AT HOME.
THEY'RE HOSPITALIZED MORE BUT
THE VAST MAJORITY OF THEIR LIVES
ARE BEING SPENT AT HOME BEING
SUPPORTED BY THEIR FAMILIES AND
AS PEDIATRIC CLINICIANS ON THE
CALL I THINK WE ALL INHERENTLY
UNDERSTAND PARENTS AND FAMILY
CAREGIVERS ARE CRITICAL PARTNERS
IN ANY OF OUR ATTEMPTS TO
ENHANCE THIS PEDIATRIC
POPULATION'S CARE AND QUALITY OF
LIFE AND HEALTH.
FROM A SPECIFIC STANDPOINT THE
TRAJECTORY OF THE LIFE SPAN OF
MEDICALLY COMPLEX CHILDREN
CREATES A NEW PARADIGM.
THE FIGURE ON THE RIGHT I LIKE
TO LOOK AT THE STUDENTS WHO
ROTATED WITH ME AND THESE ARE
THE TYPICAL TRAJECTORIES ABOUT
ADULT CONDITIONS.
YOU HAVE THE GRADUAL DECLINE AND
DROP OFF IN CANCER AND STEP WISE
DECLINE WE LEARNED ABOUT IN THE
HEART DISEASE OR COPD AND
ANOTHER DECLINE IN FRAILTY AND
DEMENTIA.
I DON'T THINK THE CMC LIFE
EXPERIENCE IS LIKE THIS.
THE FIRST COUPLE OF YEARS IT'S
VARIABLE WHERE THE HEALTH CARE
TEAMS AND PARENTS ARE LEARNING
ABOUT THE CHILD, LEARNING WHAT
NETWORK CONDITIONS ARE IMPACTING
THE CHILD AND FIGURING OUT THE
BEST MEDICAL CARE PLAN TO TREAT
THAT CHILD.
FROM THERE THE HEALTH CAN GO UP
AND DOWN AND SURPASS AN EXISTING
BASELINE AND GO DOWN AGAIN AND
WHERE IT TOOK YEARS OF POTENTIAL
STABILITY AND ENTERED PUBERTY
AND ADOLESCENCE AND YOUNG
ADULTHOOD AND FOR SOME CHILDREN
THAT'S WHERE THEIR HEALTH
DECLINES BUT ALL TO HIGHLIGHT
THE TRAJECTORY OF MEDICALLY
COMPLEX CHILD IS REALLY
UNCERTAIN.
IT'S REALLY UNCERTAIN AND WE'RE
REALLY BAD AT PREDICTING WHAT'S
GOING TO HAPPEN NEXT AND EVEN IF
WE HAVE A FEELING AND USE THE
TERM WHY THIS IS GOING TO HAPPEN
WE ARE BAD AT PREDICTING WHEN
IT'S GOING TO HAPPEN.
AS A RESULT, IN DEALING WITH THE
NEW PARADIGM OR TRAJECTORY HAS
LIMITED AND HAMPERED OUR ABILITY
TO BUILD EVIDENCE-BASED NOTE
JUST STRATEGIES BUT
INTERVENTIONS TO SUPPORT
CAREGIVERS THROUGH THE PROCESS.
AND NOW TO TRANSITION TO WHAT WE
KNOW AND USING QUALITATIVE
RESEARCH METHODS AND THE PEOPLE
WHO CAN MAKE A FOUNDATION FOR
THE WORK HAVE BEEN NURSE
SCIENTISTS WHO TOOK AN EARLY
INTEREST IN THE FIELD AND WHAT
WE JUST TALKED ABOUT.
AND TO GET MORE SPECIFICS OF
TYPICAL CMC CAREGIVER.
THEY HAVE PHYSICALLY,
COGNITIVELY CARE
RESPONSIBILITIES THEY HAVE TO
ARRANGE THE VAST MAJORITY OF
THEIR CHILD'S CARE WHILE
REMAINING CONSTANTLY VIGILANT
OVER THEIR CHILD'S MIN
MINUTE-TO-MINUTE HEALTH AND
OFTEN WITH MINIMAL SUPPORT IN
THE HOME CARE SETTING AND ARE
RESPONSIBLE FOR ADVOCATING FOR
THEIR CHILD AND ADVOCATING FOR
THEIR CHILD IN A FACE TO FACE
SETTING WITH CLINICIANS AND
ADVOCATING WITH ALL THE FAILURES
IN THE HEALTH CARE SYSTEM.
GETTING ON THE PHONE AND
ADVOCATING WITH REPRESENTATIVES
AND I THINK PEOPLE UNDERSTAND
THE FACT THAT PARENTS AND
CAREGIVERS UNDERSTAND AND KNOW
THEIR CHILD BEST BUT THAT'S ALSO
A RESPONSIBILITY ON THE PARENTS
TO MAKE SURE THEY'RE PROPERLY
COMMUNICATING CONCERNS ABOUT
SYMPTOMS, CHANGES IN HEALTH
STATUS AND QUESTIONS OR CONCERNS
OR ANXIETIES OF THEIR CHILD.
THAT'S DONE IN THE CONTEXT OF
FRUSTRATION.
SOMETIMES UNSUPPORTED CLINICIANS
RESPECT THE PARENT'S OPINION AND
WHEN EVERYTHING'S DONE QUOTE,
UNQUOTE, PERFECTLY BECAUSE OF
THE CHILD'S UNDERLYING MEDICAL
CAPABILITY WE STILL HAVE
SETBACKS AND RELATEDLY, AND ALL
THIS IS BEING PERFORMED IN THE
CONTEXT OF UNCERTAINTY ABOUT THE
FUTURE.
ONE FOR THEIR CHILD'S FUTURE
HEALTH AND ALSO WHAT THEIR
FAMILY'S FUTURE IS GOING TO LOOK
LIKE.
THEY'RE ALSO EXPECTED TO NOT
ONLY SHARE AND ENGAGE IN
DECISION MAKING BUT COMPLICATED
SHARED DECISION MAKING WHERE
THEY'RE NOT PICKING BETWEEN ONE
OR TWO CHOICES WHERE, WELL,
YEAH, YOU CAN GO THIS WAY AND
MAYBE THIS MAKES SENSE.
IT'S CHOICE, A, B, C OR D.
THEY ALL HAVE DONE SIDES AND WE
DON'T REALLY KNOW THE RIGHT
CHOICE AND CAN'T TELL YOU WHAT
LIFE IS GOING TO LOOK LIKE AFTER
EACH OF THE CHOICES BECAUSE WE
DON'T KNOW AND DOING THIS ALL
WHILE BEARING WITNESS TO THEIR
CHILD POTENTIALLY EXPERIENCING A
LOT OF SYMPTOMS.
I'M RUNNING BEHIND.
I THINK THIS IS WHERE WE'RE IN
THE INFANCY OF THE FIELD AND I
SAW THIS FIGURE WITH COLLEAGUES
IN TORONTO AND LOOK AT THE
DIFFERENT DOMAINS PEOPLE ARE
IMPACTED.
I'LL GO OVER A BRIEF REVIEW AND
FLY THROUGH SOME.
I APOLOGIZE IT'S GOING TO BE A
LOT OF TABLE DATA BUT I'LL
SUMMARIZE.
CHILDREN WITH COMPLEXITY ARE
OVER REPRESENTED MONTH THOSE
EXPERIENCING SOCIAL DETERMINATES
OF HEALTH AND WORTH HIGHLIGHTING
PEOPLE WHO IDENTIFY AS BLACK ARE
DISPROPORTIONATELY REPRESENTED
WITH CHILDREN WITH MEDICAL
COMPLEXITY AND LOWER LEVELS OF
EDUCATIONAL ATTAINMENT AND
HIGHER LEVELS OF FAMILIES LIVING
IN EITHER SINGLE PARENT OR
GRANDPARENT-LED HOUSEHOLDS.
THIS ALL MEANS IT LEADS TO A LOT
OF FINANCIAL AND EMPLOYMENT
ADVERSITY.
I'M NOT GOING TO GO THROUGH THE
NUMBERS BUT HIGHER PROPORTIONS
IN EXPERIENCING OF TROUBLE
COVERING BILLS AND FOOD AND RENT
AND EMPLOYMENT ACTIVITIES.
IF PEOPLE HAVE TO CUT DOWN ON
THEIR JOB OR IF THERE'S ANOTHER
CAREGIVER IN THE JOB KEEPING THE
JOB THEY MAY NOT LIKE TO
MAINTAIN THE CHILD'S INSURANCE
AND A STUDY WITH CHILDREN WITH
MEDICAL HEALTH CARE NEEDS AND
JUST HAVING SPECIAL HEALTH CARE
NEEDS IS ASSOCIATED WITH $20,000
OF GONE INCOME PER HOUSEHOLD PER
YEAR.
THESE FAMILIES ARE MORE APT TO
REPORT BEING ANGRY OR BOTHERED
WITH THEIR CHILD.
USING THE QUALITY OF LIFE
INSTRUMENT BY THE CDC THEY
REPORTED MENTAL HEALTH QUALITY
OF LIFE ASSOCIATED WITH THOSE
WITH HEART DISEASE OR CANCER.
THIS WAS PART OF THE
LONGITUDINAL PROJECT WE FOUND
QUALITY OF LIFE DIDN'T IMPROVE
OVER ONE YEAR DESPITE
SIGNIFICANT IMPROVEMENTS IN CARE
COORDINATION EXPERIENCES.
IN ANOTHER SURVEY CAREGIVERS SAY
THEY'RE EXPERIENCING EMOTIONAL
STRESS BUT WHAT ASPECTS ARE
IMPACTIVE AND THEY REPORT LOWER
LEVELS OF MENTAL HEALTH AND
HIGHER SYMPTOMS OF ANXIETY AND
REDUCED ABILITY TO CONTROL THEIR
EMOTIONS AND HUGE IMPACTS ON
FATIGUE AND RELATED IMPAIRMENT
AND ABOUT HALF SYMPTOMS OF
ANXIETY.
I COULDN'T FIND MUCH BUT THIS
WAS TAKEN BY THE INTERACTIVE
QUERY LOOKING AT PHYSICAL HEALTH
USING DIFFERENT DEFINITION OF
MENTALLY COMPLEX CHILDREN AND
HIGHER PROPORTIONS REPORT POORER
PHYSICAL HEALTH.
AND THESE ARE TWO STUDIES UP IN
FRONT WHO USED DATA SETS SHOWING
CARING FOR A CHILD OR INFANT
WITH MAJOR CONGENITAL ANOMALY
WAS ASSOCIATED WITH SUBSEQUENT
INCREASED RISK OF MORTALITY AND
CARDIOVASCULAR RISK.
AND I THINK ONE LAST THING
BEFORE I GET INTO FUTURE
DIRECTION TO HIGHLIGHT THAT I
THINK THE FOCUS HAS BEEN WHILE
IMPORTANT HAS BEEN LARGELY
FOCUSSED ON CHANGING OR FINDING
ENHANCED MODELS OF CARE AND CARE
COORDINATION.
TO HIGHLIGHT SOME WORK DONE IN
TORONTO WITH A STEP CARE MODEL
INTEGRATING MENTAL HEALTH
PROFESSIONALS IN A COMPLEX CARE
CENTER.
THIS IS MY LAST SLIDE HERE.
THE LAST THING I'LL TALK ABOUT
ARE POTENTIAL FUTURE RESEARCH
DIRECTIONS.
ON ONE LEVEL IT'S CONTINUING OUR
DESCRIPTIVE AND OBSERVATIONAL
WORK.
THERE'S MORE TO DESCRIBE AND SO
WE CAN BETTER UNDERSTAND AND
HERE'S IDEAS.
WE NEED MULTI-CENTER NATIONAL
AND LONGITUDINAL WORK BASICALLY
JUST DESCRIBING THE HEALTH CARE
WELL BEING AND CHANGES OVER
TIME.
WE NEED A BETTER UNDERSTANDING
OF WHAT TO DO FOR OUR HEALTH AND
WELL BEING HOW IT ASSOCIATED
WITH CHILD HEALTH.
WHAT DOMAINS OF CAREGIVER HEALTH
AND INTERVENE IMPACT CHILD
HEALTH AND CLEARLY NEED TO
BETTER UNDERSTAND STRATEGIES TO
BETTER ENGAGE FAMILIES IN OUR
RESEARCH AND IMPLEMENTING
EFFICACIOUS INTERVENTIONS AND I
THINK IF YOU GO TO THE END IF
YOU GO TO THE NEXT SLIDE I'M
COMING FROM THE PERSPECTIVE OF
DEVELOPING FOLLOWING THE STEPS
OF TRYING TO DEVELOP A
PSYCHOSOCIAL BEHAVIORAL
INTERVENTION AND THERE'S
DEVELOPING PEER SUPPORT AND
INVENTIONS OR BEST PRACTICES FOR
STARTING AN ENVIRONMENT SUPPORT
GROUP FOR FAMILY CAREGIVERS.
THERE'S A LOT OF OTHER FORMS OF
INTERVENTIONS THAT DON'T
NECESSARIY ILY NEED TO GO DOWN
PATH OF INTERVENTION BEHAVIORAL
DEVELOPMENT AND STOP THERE AND
LEAVE QUESTIONS FOR THE PANEL.
THANK YOU SO MUCH AGAIN,
EVERYONE.
>> THANK YOU, DR. YU.
TREMENDOUS IMPACT ON THE
EMOTIONAL AND PSYCHOLOGICAL
IMPACT OF CAREGIVERS AND
IMPORTANT CONSIDERATIONS GOING
FORWARD.
IF WE CAN HAVE EACH OF OUR
PANELISTS UP.
THAT WOULD BE WONDERFUL.
IS JENNIFER STILL THERE?
TERRIFIC, THANK YOU FOR ALL
BEING HERE.
WE DON'T HAVE A TREMENDOUS
AMOUNT OF TIME.
WE HAVE ABOUT 9 MINUTES.
IF ANYONE HAS QUESTIONS THEY
WOULD LIKE TO SUBMIT FEEL FREE
TO DO SO AND THE FEEDBACK BUTTON
AND THEY'LL COME TO ME TO BE
ABLE TO SEE YOUR QUESTIONS.
I'D LIKE TO START WITH JUST
ASKING DR. YU IF YOU HAVE ANY
QUESTIONS FOR YOUR FIRST
SPEAKERS AND FOR OUR SPEAKERS TO
ASK QUESTIONS FOR DR. YU BEFORE
I ASK QUESTIONS.
SOMETIMES YOU DON'T HAVE A
CHANCE TO SPEAK TO YOUR OTHER
PANELISTS AND WANTED TO GIVE A
CHANCE TO SPEAK TO EACH OTHER.
>> I HAVE ONE QUESTION FOR
JENNIFER, SPECIFICALLY, THIS IS
IS SOMETHING WHERE LET'S SAY WE
DEVELOP THE INTERVENTIONS
SPECIFICALLY GEARED AT
SUPPORTING PARENTS OR SIBLINGS
AND SAY WE KNOW THEY'RE
EFFECTIVE OR EFFICACIOUS.
WHAT DO YOU THINK IS THE RIGHT
TIME TO START IMPLEMENTING?
WHEN WE TALKED TO CAREGIVERS ON
THE ADVISORY BOARD THEY SAY AS
SOON AS POSSIBLE BUT FROM A
CLINICAL PERSPECTIVE THE FIRST
YEAR OR TWO IS SO -- THERE'S SO
MUCH GOING ON.
AND OBVIOUSLY WE HAVE TO FIGURE
THAT OUT BUT I'D BE INTERESTED
IN THE PERSPECTIVE.
>> I WOULD ARGUE IT'S RELATIVE
TO THE DISEASE THE MEDICALLY
COMPLEX CHILD HAS.
MY SON'S WAS PROGRESSIVE IN
NATURE AND DIAGNOSED AT 15
MONTHS OLD AND PROBABLY SEEMED
LIKE A TYPICAL 15-MONTH-OLD AT
THAT POINT THOUGH HE HAD A RARE
DISEASE HE WASN'T SHOWING EIGHT
OF THE SYMPTOMS.
WE GOT THE DIAGNOSIS AND AT THAT
POINT I NEEDED SOME OF THOSE
INTERVENTIONS TO, FOR EXAMPLE,
HIS OLDER BROTHER WAS FIVE AT
THE TIME.
HOW DO I INTRODUCE THE CONCEPT
OF WHAT IS GOING ON WITH HIS
BROTHER TO HIM AND HOW IS THAT
RELATIVE TO THEN GO ON TO HAVE
ANOTHER CHILD AND ANOTHER THING
AND ANOTHER SEFT INTERVENTION
COULD HAVE BEEN USEFUL TO MY OWN
MENTAL HEALTH AND HOW TO
INTRODUCE IT TO THE YOUNGER S
SIBLING AND HOW TO THINK ABOUT
AND MY HUSBAND AND I ARE WELL
SKILLED AT WHAT I CALL
DISCOVERING MY OWN PALLIATIVE
VOICE INTERNALLY AND CAME TO IT
NATURALLY.
IT'S NOT THE CASE FOR MANY
PARENTS AND FOR THEM IT'S THE
INTERVENTIONS ALONG THE PATH
THAT BUILD THAT MUSCLE AND SO IT
MAY BE THAT THEY DON'T HAVE TO
BE SO FREQUENT BUT THEY NEED TO
BE CONSISTENT AND THE IDEA OF
ACCEPTING THAT INTERVENTION
NEEDS TO BE THERE.
YOU HEARD UP MY STORY IT'S
REMARKABLE TO ME SEE SPECIALLY
GIVEN WHERE I LIVE THAT WE WERE
NEVER REFERRED TO PALLIATIVE
CARE UNTIL WE WERE BASICALLY IN
A CRISIS.
IN THE CRISIS THE PARENT IS
FOCUSSING ON SO MANY THINGS.
THE CAPACITY TO ABSORB WHAT IS
BEING PUT IN FRONT OF THEM IS
PROBABLY LIMITED.
>> DO YOU HAVE A QUESTION FOR
JUSTIN?
>> I'VE BEEN CONSUMED WITH
CHILDREN WITH S&Is AND THERE'S
A
PRODUCT TO SUPPORT THEM BUT DOES
THE ANTICIPATORY GUIDANCE
PARTICULARLY AROUND THE
DIFFERENT INFLECTION POINTS A
FAMILY MAY BE EXPERIENCING AND
ONE THAT IS PREDICTABLE IN MANY
DISEASES, HOW MUCH IS THERE
RESEARCH BEYOND HOW MUCH IT
CHANGE THE FAMILY AND
CAREGIVERS?
THERE WAS LITTLE KNOWN ABOUT MY
SON'S DISEASE 1966 AND THE
INTERNET WAS NOT THERE SO HAVE
FACEBOOK TO LEAN OB AND I
REMEMBER THINKING IF I ONLY KNEW
A PATH.
FAMILIES ALL THE TIME SAY WHAT
TO EXPECT WHEN YOU'RE EXPECTING,
THERE'S NO BOOK.
IS THERE ANY RESEARCH GOING ON
THAT SAYS IF WE PROVIDE THIS
GUIDANCE --
>> THERE'S SPECIFIC RESEARCH IN
HOW IT AFFECT THE MEASURES OF
MENTAL HEALTH.
I DON'T KNOW THAT'S HAPPENING.
THINK IT'S HUGE AND SOMETHING TO
LOOK AT.
AND WE'VE LOOKED AT THIS AND IN
THE NICU SETTING AND THERE'S
UNCERTAINTIES IN THE YEAR OF
SEVERE NEUROLOGICAL IMPAIRMENT.
LIKE WHAT ARE THE COMMUNICATIONS
AND WHAT DO WE THINK OR HOW DO
WE THINK IT COULD BE BETTER.
I'M NOT AWARE BESIDES THE
QUALITATIVE REPORTS.
I'M NOT REALLY AWARE OF ANYTHING
CLEARLY DEMONSTRATING OR
DESCRIBING HOW MENTAL HEALTH
CHANGES OVER TIME AND I DIDN'T
FEEL LIKE A COMMUNICATION
STANDPOINT WE DIDN'T TAKE A LOT
FROM ADULT PALLIATIVE CARE AND
TRIED TO APPLY IT.
WE CAN ADVANCE THE COMMUNICATION
SCIENCE BY THINKING WHAT WE HAVE
TO OFFER AND THE CONTEXTS ARE
DIFFERENT AND THERE ARE WAYS TO
STUDY THIS MORE RIGOROUSLY AND
INFORM NOT HOW JUST
COMMUNICATION SPECIALISTS DEAL
WITH FAMILIES BUT ETCETERA.
IF ANYONE FROM THE CALL THINK
JUSTIN YOU'RE MISSING THIS FEEL
FREE TO JUMP IN.
>> WE HAVE A QUESTION FROM THE
VIDEOCAST AND THAT IS AS
CLINICIANS IT CAN BE DIFFICULT
TO GET REIMBURSED OR HAVE
FUNDING TO SUPPORT CARING FOR
CAREGIVERS OR SIBLINGS.
CAN YOU SPEAK TO HOW RESEARCH
TRIAL INTERVENTIONS CAN PROVIDE
A BRIDGE TO THAT SUPPORT?
ANY TAKERS?
WOULD EITHER OF YOU LIKE TO GO
FIRST?
>> I CAN OFFER A STAB BUT IT'S A
GREAT QUESTION AND INTERROGATE
THE WHOLE SYMPTOM.
IT'S A SYSTEM MADE UP BY PEOPLE.
WE CAN QUESTION IT AND MAKE SOME
WAVES.
DR. WIENER AND I WERE PART OF A
SIBLING RESEARCH SUMMIT IN
NOVEMBER AND THE SAME QUESTION
GOT BROUGHT UP AND I THINK ABOUT
WAYS WE CAN OFFER SERVICES AND
SUPPORT IN THE PLACES WHERE
SIBLINGS MOST OFTEN RESIDE.
HAVE WE LOOKED AT THOSE
COMMUNITY RESOURCES LIKE
INTEGRATIVE MENTAL HEALTH IN THE
PRIMARY CARE SETTING, THE
PRIMARY CARE PEDIATRICIAN OR
NURSE PRACTITIONER ASKING HOW
THAT KID IS DOING SCHOOL NURSES
SUPPORTING CHILDREN IN THEIR
ENVIRONMENT.
I THINK THERE ARE -- SO I THINK
IT CAN BE HARD BUT WE DON'T
THROW UP OUR HANDS AND SAY WE
CAN OUTSIDE THE BOX IN THE NEXT
WAVE OF PEDIATRIC PALLIATIVE
CARE RESEARCH AND WHY IT'S THE
PRIMACY OF PARTNERING WITH
ORGANIZATIONS SO CLOSELY
CONNECTED TO FAMILIES WE CAN
FIND OUT THE BEST WAYS TO
SUPPORT THEM.
I MAY NOT BE THE PERSON
PROVIDING THE SUPPORT BUT MAY BE
OPENING THE QUESTIONS FOR THE
PERSON TO HELP ME CONNECT THEM
TO RESOURCES IN THEIR COMMUNITY.
I WISH I HAD A MAGIC WAND BUT I
WE NEED TO START THE
CONVERSATION AND RE-IMAGINE
WHAT'S POSSIBLE.
>> ANY OTHER TAKERS?
THIS IS WHERE WE NEED TO WEIGH
THE PROS AND CONS OF CONDUCTING
A SUPER RIGOROUS CLINICAL TRIAL
VERSUS LEANING MORE TOWARDS
PRAGMATIC ALMOST IMPLEMENTATION
FOCUSSED RESEARCH.
AND I THINK -- WE'VE ALWAYS HAVE
A DEARTH OF PEDIATRIC CARE
SPECIALISTS.
PART OF ME WANTS TO FOCUS FUTURE
TRIAL WORK ON TESTING
INTERVENTION ARE THINGS
BASICALLY SKILLS WHERE ANY
CLINICIAN THAT WILL PROVIDE
PEDIATRIC PALLIATIVE CARE CAN GO
TO THE ROUTINE PRACTICE AND OUR
HOPE IS ALL THE WORK BEING DONE
BY THE PEOPLE PRESENTING CAN BE
SEEN AS HERE ARE WAYS TO FILL UP
MY TOOLBOX AND THAT GOES WITH
FURTHER EXPANDING AND
FORMALIZING THE PROTOCOLS FOR
PEDIATRIC PALLIATIVE CARE
EDUCATION SPECIFICALLY.
>> ALONG WITH THE PAYMENT ISSUE
WE KNOW THAT NOT ALL PALLIATIVE
CARE SERVICES HAVE A FORMAL
PROCESS FOR ASSESSING CAREGIVER
NEEDS, SIBLING NEEDS AS WE'VE
HEARD.
BOTH SIBLINGS AND CAREGIVERS CAN
FALL THROUGH THE CRACKS.
ESPECIALLY IN BEREAVEMENT.
I KNOW WE DIDN'T HAVE A CHANCE
TO REALLY BE ABLE TO ADDRESS
THAT AND WE DIDN'T HAVE A FORMAL
TALK IN THAT BUT WONDERING IF
YOU CAN EACH OF YOU SAY A FEW
WORDS ABOUT THAT IMPACT AND
PERHAPS MAYBE VOON THI -- EVEN
TIMING NOT JUST REIMBURSEMENT
ISSUE.
JENNIFER YOU BEAUTIFULLY TALKED
ABOUT ISABELLE AND NOAH'S NEEDS
AND THINK WITH THE BEREAVEMENT
ISSUE AND HOW TO DO BETTER?
>> BEREAVEMENT IN MY EXPERIENCE
IN THE MEDICAL COMMUNITY AND FOR
MY FAMILY THERE'S A SHORT PERIOD
AFTER THE DEATH OF THE CHILD
WHERE YOU HAVE SUPPORT AND THE
FAMILY GETS LAUNCHED INTO THIS
PLACE OF WHERE DO I GO NEXT AND
COPE WITH THIS AND IT'S ANOTHER
PROBLEM TO BE SOLVED.
AGAIN, WHEN YOU LOOK AT THE
ENTIRE FAMILY UNIT I'M THINKING
HOW AM I GOING TO PICK MYSELF
OFF THE FLOOR LET ALONE MY
HUSBAND AND CHILDREN AND GET
THEM THE SUPPORT THEY NEED.
GOING BACK TO THE MONEY QUESTION
IF WE GO DOWN STREAM AND SAY HOW
MUCH LESS CAN WE SPEND IF WE
INVEST NOW VERBS US -- VERSUS
WAITING TO WHAT WE MIGHT HAVE TO
SPEND LATER AND I KNOW FROM MY
EXPERIENCE WE ARE CONSUMERS OF
EIGHT OF THERAPY IN OUR
HOUSEHOLD BOTH INDIVIDUALLY AND
AS A GROUP AND SOME OF THAT IS
RELATED TO THE LIVED EXPERIENCE
MY CHILDREN HAVE AND THEIR
BEREAVEMENT AND HOW WE PROCESS
IT AND HOW WE ALL SEPARATELY
PROCESS IT IN DIFFERENT WAYS.
AND SO I THINK FOR CHILDREN WITH
PROGRESSIVE DEBILITATING
DISEASES LIKE MANY S AND Is WE
NEED TO LOOK AT BEREAVEMENT
ALONG THE PATH AND LOOK AT THE
ANTICIPATORY BEREAVEMENT FROM
THE SIBLING BEREAVEMENT AND WHAT
ARE THEY MISSING OUT ON AND
IDENTITY AND EVEN THE IDENTITY
OF THE SIBLING CHANGES.
I'M FORTUNATE AND IT WAS
SOMEWHAT STRATEGIC IN HAVING A
SECOND OR THIRD CHILD BECAUSE I
KNEW I DIDN'T WANT MY CHILD TO
BE LEFT AS AN ONLY CHILD IT WAS
A CONSCIOUS DECISION ON MY PART
BUT THE IDENTITY MY SON CARRIES
WITH THAT IS VERY DIFFERENT THAN
THE IDENTITY MY DAUGHTER
CARRIES.
I THINK WE DO HAVE TO ADDRESS
THE BEREAVEMENT AND WE'RE TEN
YEARS OUT AND SOME OF THESE
MANIFESTATIONS HAVE COME TO BEAR
IN THE LAST FIVE YEARS AFTER THE
DEATH OF MY CHILD.
SO IT DOESN'T HAVE A SUCCINCT
TIME LINE.
>> THINK OF THE HOSPICE SERVICES
PROVIDED MANY TIMES AND OFTEN
IT'S WAY PAST WHEN IMPACT HITS
AND CHANGES OVER ONE'S LIFE
TRAJECTORY.
ANY OTHER THOUGHTS ABOUT
BEREAVEMENT CARE AND FUTURE
DIRECTIONS?
>> JUSTIN, WOULD YOU LIKE TO
WEIGH IN?
I THINK JENNIFER SUMMED IT UP
BEAUTIFULLY.
THE ONLY THING I WOULD ADD IS
THE EMPHASIS ON BEREAVEMENT
INTERVENTION AND SUPPORT ACROSS
THE CHILD'S LIFE COURSE AND
THINKING ABOUT THE POINTS OF
GRIEF AND THAT ANTICIPATORY
GRIEF FITS IN WITH THE NICHD
EMPHASIS ON PREVENTIVE CARE.
I THINK IT COULD CROSS DISEASE
STATES AND ACROSS FAMILY MEMBERS
BUT THAT EMPHASIS COULD BE
HOUSED THERE.
>> IT IS TIME FOR A BREAK.
I THINK EVERYONE'S PROBABLY
READY FOR THAT.
THE COURAGEOUS PARENT NETWORK
FOR PEOPLE NOT FAMILIAR WITH IT,
PLEASE LOOK IT UP.
IT'S PHENOMENAL.
SUCH RICH RESOURCES.
I CAN'T THANK YOU ENOUGH, EACH
OF YOU FOR YOUR POWERFUL AND
INFORMATIVE AND IMPORTANT
PRESENTATIONS.
WE'LL GO TO BREAK NOW AND COME
BACK AT 2:10 AND THANK YOU ALL.
>> GOOD AFTERNOON AND WELCOME
BACK.
I'M MICHAELA STEFAN AND I WORK
AT THE NHLBI.
I'LL MODERATE THE NEXT SESSION
ETHICAL CHALLENGE CANS OF
PEDIATRIC PALLIATIVE CARE
RESEARCH AND ADDS YOU KNOW
ADVANCES IN SCIENCE AND
TECHNOLOGY AND RECOGNITION OF
ETHICS AS A FOUNDATION FOR
CLINICAL PRACTICE OF RIGHTS AND
SOCIAL CHANGES RELATED TO HEALTH
HAVE STRONGLY INFLUENCED THE
APPROACH TO MANAGEMENT OF
PATIENT ILLNESSES ESPECIALLY
WITH THOSE ADVANCED DISEASES IN
PEDIATR
PEDIATRICS YOU CAN GO CHECK OUT
THE SPEAKER BIOS BY GOING TO THE
CONFERENCE WEBSITE AND SEND
QUESTIONS WHEN YOU HAVE THEM
THROUGH THE VIDEOCAST LINK.
OUR FIRST SPEAKER IS DR
DR. MOYNAHAN AT BOSTON
CHILDREN'S HOSPITAL IN BOSTON ,
MASSACHUSETTS.
SHE'S DONE IMPORTANT RESEARCH
REGARDING DECISION MAKES AND AND
OF LIFE CARE AND FACTORS WITH
QUALITY OF LIFE AND PEDIATRIC
INTENSIVE CARE.
SHE'S PRESENT ETHICAL DECISION
MAKING WITH PICU AND NICU.
>> THANK YOU FOR THE
INTRODUCTION AND THANKS FOR THE
INVITE.
I TRAINED IN AUSTRALIA BUT
CURRENTLY WORK IN BOSTON IN THE
CARD
CARDIAC NICU AND GIVE
PERSPECTIVES RELATED TO DECISION
MAKING.
THESE VIEWS ARE MY ONLY BUT MANY
HELPED SHAPE THEM OVER THE
YEARS.
I'LL FIRST OUTLINE THE
CHALLENGES TO DECISION MAKES IN
PEDIATRIC CRITICAL CARE WITH
TECHNOLOGY APPLICATION LIKE
MEMBRANE OXYGENATION OR ECMO.
IT UNDER SCORES WHY THIS AREA
DEMANDS ATTENTION AND WHY WE
NEED TO SHIFT OUR THINKING.
THEN I'LL DISCUSS EMERGING
STRATEGIES ACKNOWLEDGING THE GAP
I HOPE IT'S A CALL TO BRAIN
STORM MORE SOLUTION.
OVER THE PAST 50 YEARS ADVANCES
IN MEDICAL TECHNOLOGY HAVE LED
TO REALLY INNOVATIVE WAYS TO
SUSTAIN THE LIVES OF CHILDREN
WITH HISTORICALLY LIVE LIMITING
ILLNESS WITH ALLOCATION OF
INTENSE RESOURCE ALLOCATION
ACROSS POPULATIONS AN INITIATION
OR DISCONTINUATION OF THE
THERAPIES AT THE INDIVIDUAL
LEVEL.
ADDING TO THAT IS RISE PATIENT
COMPLEXITY IN ILL, AND THE
PROPORTION OF THOSE WITH
COMORBIDITIES AND PRIOR ICU
ADMISSIONS IS INCREASING.
AND SHOULD OFFER TIME FOR
ADVANCED DECISION MAKING THIS
OPPORTUNITY IS OFTEN MISSED
BECAUSE THE ADVANCEMENT IS OUT
PACED IN EXPLICIT ETHICAL
CONSIDERATION.
ONE IS ECMO.
IT'S INSTITUTED OR
CARDIORESPIRATORY FAILURE
REFRACTORY TO MEDICAL MEASURES
LIKE VENTILATION AND
MEDICATIONS.
ECMO COMPRISES AN EXTERNAL PUMP
AND OXYGEN RAADE ATED AND THIS
REQUIRES LARGE TUBES TO CARRY
BLOOD OUTSIDE THE BODY OUTSIDE
THE VESSELS AND HIGHLY MORBID.
THE TECHNOLOGY LIKE ECMO IS NOT
JUST ADVANCING BUT ITS USE IS
EXPANDING AND CHANGES AND MANY
CLINICAL CONTRAINDICATION NO
LONGER ABSOLUTE OR EVEN RELATIVE
THESE DAYS WITH USE IN
PREVIOUSLY CONSIDERED TABOO
CONDITIONS LIKE PREMATURITY AND
CANCER AND THIS RESULTS IN
VARIABILITY AT THE STATE AND
COUNTRY LEVEL.
SO NOT ONLY DOES THE NEEDLE MOVE
BETWEEN LOCATIONS AND CHANGES
OVER TIME, WE ALL CAN'T AGREE ON
WHAT STANDARD CARE IS.
MOST PEDIATRIC RESEARCH IS
RETROSPECTIVE OFTEN REGISTRY
BASED WITH LIMITED ACCURATE
COLLECTION OF DATA FROM SOCIAL
DEMOGRAPHICS EMPHASIZING THE
IMPORTANCE OF PERSPECTIVE STUDY.
SOCIETY'S ALSO CHANGED.
LIFE STRESSORS ARE AT MAXIMAL
EFFORTS AND FAMILIES HAVE ACCESS
TO INFORMATION OF VARYING
QUALITY.
ECMO WAS SHOWN ON GREY'S ANATOMY
SO EVERYONE KNOWS WHAT IT IS NOW
BUT UNLIKELY TO UNDERSTAND WHAT
IT REALLY IS.
FOR CPR AND ECMO THERE'S
UNREALISTIC PORTRAYALS OF
SURVIVE AND THIS IS A FRAMING.
THE STUDY FOUND OVER 200 MEDIA
REFERENCES TO PEDIATRIC ECMO THE
VAST MAJORITY, ALMOST 95%
IMPLIED SURVIVAL WHEN IN REAL
IT'S A HIGHLY INVASIVE LAST
RESORT OPTION WITH MORTALITY
AROUND 50% AND SUBSTANTIAL
MORBID
MORBIDITY.
THE SOCIETY AND MEDICAL
PROFESSIONAL HAS ALSO BECOME
MEDICALIZED FRAMED AS AVOIDABLE
AND MOVED TO THE PURVIEW OF
HEALTH CARE RATHER THAN A
NORMALIZED SOCIAL EVENT WE WILL
ALL EXPERIENCE.
THOUGH CHILDHOOD DEATH IS
UNDOUBTEDLY A TRAGEDY OUR FOCUS
ON SURVIVAL COMES AT A COST.
WE NEED TO THINK ABOUT HOW MUCH
SUFFERING WE'RE WILLING TO
ACCEPT FOR THIS LONG TAIL AND
ECMO IN PARTICULAR STAVES OFF
BETTER THAN ALL OTHER LIFE
SUSTAINING AN APE K CAPABILITIE
DEATH WAS FRAMED AS A NORMAL,
RELATIONAL SPIRITUAL EVENT
RATHER THAN HOSPITAL EVENT AND
DEATH IS NOT A PRODUCT OF VOICE
BUT INEVITABLE OUTCOME OF
ILLNESS AND DISEASE.
WE'RE A PLURALIST SOCIETY AND
PROTECTING AN INDIVIDUAL'S
VALUES AT THE EXPENSE OF SOCIETY
MAY NOT BE SUSTAINABLE.
STAFF AND COGNITIVE CAPACITY ARE
VALUABLE AND FINITE AND
INCREASING PROPORTION OF SOCIETY
VIEW HEALTH CARE WITH A
CONSUMER'S LENS.
WE NEED TO THINK CAREFULLY ABOUT
HOW WE TARGET RESOURCES IN A WAY
THAT BOTH RESPECTS AND VALUES
INDIVIDUALS AND CONSIDERS THE
GREATER GOOD.
NAVIGATING THESE GOALS ARE
CHALLENGED BY THE LEGACY OF
STRUCTURAL DISCRIMINATION
DRIVING HEALTH INEQUITY AND SOME
GROUPS REMAIN UNDER REPRESENTED.
ETHICALLY SUPPORTED DECISION
MAKING SHOULD ADVANCE HEALTH
EQUITY.
THIS IS TRUE FOR ECMO.
THE SCOPING REVIEW EXAMINED
PRACTICE VARIABILITY WITH A LENS
LOOKING AT SOCIAL DETERMINATES
OF HEALTH OR OUTCOMES.
DISAPPOINTINGLY DATA WAS LOW IN
QUALITY.
AND 148 ARTICLES STUDIED,
ETHNICITY OR PAYER VARIABLES.
THIS REPRESENT THE PROPORTION OF
PUBLICATION.
OF THOSE WITH STATISTICAL
ASSOCIATIONS RESULTS STRONGLY
FAVORED ADVERSE OUTCOMES OR
LOWER ECMO UTILIZATION FOR UNDER
REPRESENTED OR UNDER RESOURCED
POPULATIONS.
SO ALL OF THESE REASONS UNDER
SCORE WHY WE NEED ETHICALLY
SUPPORTED APPROACHES TO DECISION
MAKING IN CONTEMPORARY PEDIATRIC
CRITICAL CARE.
IT'S ESPECIALLY DISAPPOINTING
IT'S LACKING.
THOUGH NOT UNSURPRISINGLY
CONSIDERING THE POPULATION
HETEROGENEITY AND SUBJECTIVITY
IN BURDENS AND OUTCOMES.
THIS SYSTEMATIC REVIEW IS FROM
THE ETHICS DOMAIN OF THE P PET
PROCESS TO PROVIDE A
COMPREHENSIVE UNDERSTANDING OF
EXISTING PRACTICAL GUIDANCE ON
THE USE OF MEDICAL TECHNOLOGY IN
CHILDREN.
OVER ALL WE FOUND BROAD SCOPE
PEDIATRIC SPECIFIC GUIDANCE
INFORMING PRACTICE.
SO ON THAT NOTE, I'LL NOW OFFER
SOME UNIQUE STRATEGIES I'VE BEEN
LUCKY ENOUGH TO BE A PART OF
DEVELOPING OR SEEN EMERGING FOR
THESE TYPES OF COMPLEX DECISIONS
INVOLVING PARADIGM SHIFTS IN HOW
THERAPIES ARE MADE.
FIRST BY ETHICALLY SUPPORTED
DEFINITIONS OF BENEFICIAL
THERAPY USE AROUND A GOAL.
SECOND, BY IMPLEMENTING
LONGITUDINAL PROCESS BASED
LONGITUDINAL DECISION MAKING AND
TRANSPARENCY AROUND INEQUITY AND
PERSONALIZED PREEMPTIVE
CONVERSATIONS AND NOVEL
APPROACHES TO MANAGING CONFLICT.
CPR REQUIRES PATIENTS AND
FAMILIES TO ACT.
OTHER SUPPORT LIKE DIALYSIS OR
HOME VENTILATION ARE CONSIDERED
VALUE-BASED DECISIONS AND THIS
IS THE RECOMMENDATIONS DECISION
MANY OF MAKING MODEL IN CRITICAL
CARE.
AND TRANSPLANT ULTIMATELY
MEDICAL TEAMS HOLD THE DECISION
AUTHORITY FOR RESOURCE
ALLOCATION.
AND THEY'RE RESOURCE LIMITATION
WITH AGENCY OVER ITS USE.
THE PALLIATIVE CARE HAS
CONSIDERED GOAL-CONCORDANT CARE
THE HOLY GRAIL AND LOOK AT
TREATMENT AND OUTCOMES IS NOT
ONLY A CONCEPT THAT MAKES SENSE
BUT WIDELY SUPPORTED BY
PATIENTS, CAREGIVERS,
CLINICIANS, HEALTH SYSTEMS AND
PAYERS.
THE GOAL ORIENTED MEDICINE IS
STANDARD IN OTHER MEDICAL
DISCIPLINES TOO.
ANTIBIOTIC THERAPY IS TO TREAT
INFECTION.
AND CANCER SUPPRESSION IS
STOPPED AND ON THIS BASIS IT'S
REASONABLE THAT ICU CLINICIANS
BE MORE EXPLICIT AROUND DEFINING
USABILITY AND GOALS AND THE
FIRST PARADIGM SHIFT IS
ETHICALLY SUPPORTED DEFINITIONS
OF BENEFICIAL USE BY
COLLABORATION AND I'LL POINT TWO
EXAMPLE TO ECMO WHILE TIME
CONSUMING AND COSTLY RESULTED IN
HIGHLY VARIABLE OUTCOMES.
THERAPIES DEEMED FEASIBLE FOR A
GOAL FOR RESPIRATORY SUPPORT AND
ALIGNS FOR PATIENT OR IS
SURROGATE DECISION MAKER'S
VALUES AND EMYBODIES THE DECISIN
MAKING AS A PARTNERSHIP.
HERE ACROSS DISCIPLINARY
COLLABORATION BETWEEN ICU AND
PALLIATIVE CARE TEAM FRAME ECMO
AS A TEMPORARY INTERVENTION
TOWARDS A SPECIFIC GOAL AND
RECOMMEND EARLY DISCUSSION OF
CIRCUMSTANCES WHERE ECMO IS NO
LONGER EFFECTIVE TO ACHIEVE
THOSE INTENDED GOALS TO PREPARE
FAMILIES TO POTENTIAL
DISCONTINUATION.
ONE THE RATIONALE THAT EACH
PATIENT RECEIVES A COMPREHENSIVE
LIST OF BENEFITS FOR THEM AND
FOLLOWING A ROBUST OR STRUCTURED
PROCESS TO MAKE DECISION.
AND THESE APPROACHES ALIGN WITH
ACCOUNTABILITY FOR REASONABLE
FRAMEWORK WHICH IS PROMOTE
LEGITIMATE DECISIONS THROUGH
FOUR CORE PRINCIPLES.
THAT RATIONALES BE ACCESSIBLE
AND BOUNDED IN REASON WITH
MECHANISM TO ENSURE THESE
CONDITIONS ARE MET BECAUSE WHILE
REASONABLE PEOPLE MAY DISAGREE
HOW TO NAVIGATE THE STEPS ARE
DEFINED HERE.
SO REGARDLESS OF AN INDIVIDUAL'S
AGREEMENT WITH THE FINAL
DETERMINATION AS IT WAS ARRIVED
AT VIA A LEGITIMATE
DECISION-MAKING PROCESS, ALL
STAKEHOLDERS CAN BE CONFIDENT
THEY'VE BEEN AFFORDED THE FAIR
DELIBERATION THEY DESERVE AND TO
STANDARDIZED INDICATIONS ACROSS
ALL THE THERAPIES AND ALL
CENTERS.
ADDITIONALLY, CLINICAL STATS
CHANGE.
AND GOALS SHOULD BE RECONSIDERED
IN CONVERSATIONS THROUGHOUT THE
PATIENT CARE CONTINUUM.
A LEGITIMATE DECISION MAY HELP
WITH DISCUSSIONS WITH FAMILIES
IF THEY'RE NO LONGER BENEFICIAL
AND HOLDING INSTITUTIONS
ACCOUNTABILITY AND HEALTH
ACCOUNT DASHBOARDS MAY REGAIN
SOCIETAL TRUST IN CLINICAL
DECISION MAKING.
THE DATA IDENTIFY DISPARITIES
AND PRIORITIZE TARGETED
INTERVENTIONS BECAUSE
TRANSPARENCY ABOUT OUR SHORT
COMINGS AS HEALTH CARE
INSTITUTIONS MAY BE A FIRST STEP
IN ADDRESSING THE IMPLICIT
INSTITUTIONAL AND STRUCTURAL
BIASES THAT IMPACT THE QUALITY
OF CARE RECEIVED AND HOLD US
ACCOUNTABLE FOR THE DECISIONS WE
MAKE.
WE ALSO NEED TO STRIVE FOR
BETTER DATA AND RESEARCH THAT
ADVANCES HEALTH EQUITY AND A
GROUP OF US HAVE BEEN WORKING TO
PROMOTE RACE-CONSCIOUS RESOURCE
OUTPUTS FROM THE REGISTRY.
THIRD CONVERSATIONS SHOULD BE
PREEMPTIVE AND PERSONALIZED.
TECHNOLOGY OR CPR HAVE YOU HAD
NOT BE PROVIDED TO AVOID HARD
CONVERSATIONS AND PREPPATORY
PLANNING AND RECOMMENDATION
EARLY RECOMMENDATIONS AGAINST
CPR IF THEY PREDICT UNSUCCESSFUL
RESUSCITATION AND THERE'S A
SPECTRUM OF SHARED DECISION
MAKING BY PERSONALIZING OUR
COMMUNICATION AND TAILORING HOW
FIRMLY WE GUIDE FAMILIES TO THE
CONTEST.
FOR SOME DECISION WE SHOULD
LOOK AT THE EXTREME END OF THE
SPECTRUM AND REFRAME THE MEDIA
NARRATIVE AND PROVIDE
RECOMMENDATIONS AGAINST
TECHNOLOGIES.
BUT IT'S NUANCED.
THERE'S ARCHITECTURE WITH HOW
OPTIONS INCREASE THE LIKELIHOOD
OF AN OUTCOME WITHOUT COERCION
BUT THESE ARE SKILLS TO BE
LEARNED IN PRACTICE AND PROTECT
PARTICULARLY LESS RESOURCED
FAMILIES FROM IMPLICIT BIAS.
DESPITE THIS NEED FOR HIGH
QUALITY COMMUNICATION AND THE
FACTS THAT DECISION MAKING IS
UBIQUITOUS IT'S NOT UNIFORMLY
TAUGHT TO TRAINEES BUT INTENDED
TO BE LEARN OSMOSIS.
ARMING PHYSICIANS IN TRAINING
IS A HUGE GAP AND TRAINEES FEEL
IT.
SOME RUN VITAL TALK FOR TRAINING
BUT THERE'S TIME AND FUNDING
WHICH IS INFEASIBLE AND WE NEED
TO THINK ABOUT HOW TO EXTEND THE
REACH.
IN AUSTRALIA, FOR EXAMPLE,
TRAINEES HAVE A MANDATORY
TWO-DAY COURSE PRACTICING
COMMUNICATION STRATEGY WITH
ACTORS.
>> ALMOST AT THE END.
WE NEED MORE DATA HOW TO
INTEGRATE PEDIATRIC PALLIATIVE
CARE OR ETHICS EXPERTISE SUCH AS
OUGAUTOMATIC OR TRIGGERED
CONSULTATION.
I WORRY A TIDAL WAVE OF CONFLICT
IS COMING AND UNPREPARED AND
LACK TOOLS TO DEAL WITH IT.
THE DEBATES LACK IMPLEMENTATION
TECHNIQUES TO CLINICIANS AT THE
BEDSIDE.
WHAT DIFFERS TO PARENTS IS
PROFESSIONAL INTEGRITY AND
RESPONSIBILITY TO THE CHILD AND
ANY LEGAL RESOURCE IS SUB
OPTIMAL.
THERE'S BEEN A LOT OF DEBATES
ABOUT THE BEST INTEREST STANDARD
BETWEEN THE AUSTRALIAN AND U.K.
APPROACH VERSUS THE
U.S. APPROACH AND NEITHER OF
WHICH HAVE BEEN SHOWN TO BE
ADEQUATE.
IN AN ATTEMPT TO OVERCOME THE
CRITICAL CARE SOCIETIES AND
ADOPT A PROCESS-BASED APPROACH
TO ADDRESS THE POTENTIALLY
INAPPROPRIATE THERAPIES AND
BALANCING COMPETING ETHICAL
CONSIDERATIONS AND LACKING
SOCIETAL ENDORSEMENT.
WE NEED NOVEL ACCESSIBLE AND
PRACTICAL SOLUTIONS FOR CONFLICT
AND I THINK THIS GAP HAS TO BE
ADDRESSED BY COLLABORATION
BETWEEN DISCIPLINES OF THE
MEDICAL PROFESSIONAL WITH
COMMUNITY ENGAGEMENT.
IN CONCLUSION.
WE'RE AT A FRONTIER AS WE CAN DO
MORE IN MEDICINE, WE NEED TO
BETTER UNDERSTAND HOW IT HELPS
PATIENTS AND SOCIETY EQUITABLY
AND IN AN ETHICALLY SUPPORTED
WAY.
ACKNOWLEDGING THERE'S MORE WORK
TO BE DONE IN THE FIELD AND
POTENTIAL SOLUTIONS ARE TO
DEFINE BENEFICIAL THERAPIES WITH
CLINICAL AND VALUE-BASED GOALS
AND PERSONALIZE OUR APPROACH TO
DECISION MAKING WITH
TRANSPARENCY AND GIVE THE NEXT
GENERATION THE SKILLS TO HAVE
THE CONVERSATIONS AND
ORGANIZATIONS NEED TO DEFINE A
COMPLEX FOR DECISION MAKING AND
DEVELOP STRATEGIES FOR CONFLICT.
I WOULD LIKE TO THANK ALL THAT
CONTRIBUTED TO THE WORK AND LOOK
FORWARD TO THE PANEL DISCUSSION.
>> THANK YOU VERY MUCH.
AND NOW I WANT TO INTRODUCE OUR
SECOND SPEAKER, DR. BELL IN
GRAND RAPIDS, MICHIGAN.
HER CLINICAL EXPERTISE IS IN
CARING FOR YOUNG ADOLESCENTS AND
YOUNG ADULTS LIVING WITH
ADVANCED CANCER IN ACUTE CARE
SETTING AND PROVIDING END OF
LIFE CARE AND HELPED CLINICIANS
IDENTIFY A YOUNG PERSON'S
READINESS TO ENGAGE IN CLINICAL
CONVERSATION THAT RESPECT AS A
YOUNG PERSON'S HOPES AND DREAMS
FOR THE FUTURE WHILE ACCEPTING
THE PALLIATIVE CARE AND END OF
LIFE DECISIONS.
DR. BELL, HAVE YOU 20 MINUTES.
>> THANK YOU SO MUCH.
IT'S A PLEASURE TO BE HERE BUT I
THINK I'M STILL HAVING TECHNICAL
DIFFICULTIES BECAUSE I STILL SEE
THE END OF DR. MOYNAHAN'S
PRESENTATION.
>> WE SEE YOUR FIRST SLIDE.
I'M HONORED TO BE HERE TODAY.
I HAVE NO CONFLICTS OF INTEREST
OR CONSUMER INTERESTS TO
DISCLOSE.
THE SPANISH POET SAID TRAVELER,
THERE NOT PATH.
THE PATH WAS BE FORGED AS YOU
WALK.
I'M THANKFUL FOR THE PIONEERS IN
OUR FIELD AND THE PEOPLE WHO
HAVE GONE BEFORE US TO FORGE THE
PATH AND ARE CONTINUING TO FORGE
THE PATH ALONG WITH OUR PATIENTS
AND THEIR FAMILIES.
TODAY WE'RE GOING TO TALK ABOUT
THE OVER ALL HEALTH NEEDS OF
ADOLESCENTS AND YOUNG ADULTS
WITH SERIOUS ILLNESS.
WE'RE GOING TO DISCUSS A LITTLE
BIT ABOUT THEIR PALLIATIVE AND
END OF LIFE DECISION MAKING
NEEDS.
LOOK AT THE GAPS AND DISCUSS
PRIORITIES FOR THE FUTURE.
.
SO EACH OF US IN THIS ROOM HAVE
OUR OWN WHY.
FOR ME IT BEGAN SEVERAL YEARS
AGO WHEN I WAS CARING FOR
SERIOUS ILLNESS PATIENTS IN
THEIR HOMES AND I WAS EQUIPPED
TO ENTER INTO THIS SPACE WITH A
CRITICAL CARE BACKGROUND AND
CARE FOR THE CHILDREN.
I HAD MY OWN RABT LA BTRY TO SEE
THERE WERE THINGS WE DIDN'T HAVE
ANSWERS FOR AND THE KEY
OBSERVATIONS WAS THERE'S A LOT
OF PROTECTION THAT GOES ON BACK
AND FORTH BETWEEN PARENTS AND
THE CHILDREN AND I BELIEVE THIS
IS DONE OUT OF LOVE.
CHILDREN ALSO PROTECT THEIR
PARENTS BUT IT DOES INTERFERE
WITH OUR ABILITY TO INITIATE AND
ENGAGE THEM IN END OF LIFE
COMMUNICATION.
AS ADOLESCENTS MATURE, THEY HAVE
A HIGHER UNDERSTANDING OF THE
FINALITY OF DEATH AND EMOTIONAL
TOLL DEATH TAKES ON THEMSELVES
AND THEIR FAMILIES.
AND IT CHANGES THE PROCESSING OF
INFORMATION.
AND THE OTHER THING THAT WAS
DIFFICULT FOR ME TO WATCH OR BE
A PART OF WAS THE SOCIAL
ISOLATION THAT OCCURS AS
ADOLESCENTS AND YOUNG ADULTS
TRAVERSING THIS PATH TOWARDS END
OF LIFE AND FAMILY MEMBERS GO
ALONG THE PATH WITH THEM BUT
NEITHER KNOWS HOW TO ENGAGE WITH
EACH OTHER FOR THESE
COMMUNICATION ISSUES AND IT'S
THIS SOCIAL ISOLATION WAS
DIFFICULT TO WITNESS.
HERE'S SOME PIONEERS THAT I
THANK IN MY FIELD AND HOW A
CHILD SITUATES THEMSELVES OR
ADOLESCENT IN A PLACE WHERE THEY
BECOME AWARE OF THE FACT THAT
THEY ARE GOING TO DIE BUT GO OUT
OF THAT AWARENESS AND ENGAGE IN
OTHER PEOPLE TO MAKE THOSE
OTHERS MORE COMFORTABLE AND THEN
DR. HINDS WORK WHERE SHE
ELEVATED THE ADOLESCENT VOICE IN
PARTICULAR MAKING END OF LIFE
DECISIONS AND HELPED NORMALIZE
THE FACT WE CAN TALK ABOUT THIS
AND THEY WANT TO ENGAGE WITH US
AND DR. WIENER'S WORK IN LOOKING
AT ADD -- ADOLESCENTS WANT TO
PLAN THEIR END OF LIFE CARE.
I REMEMBER THE EXACT PLACE I I
AM IMPLEMENTED THE RESOURCES IN
BONE MARROW TRANSPLANT SETTING
WHERE A MOM ASKED ME TO GO IN
THE ROOM AND HAVE THE
CONVERSATION AND WANTED ME TO
OPEN UP THE CONFERENCE
CONVERSATION WITH THEIR SON AND
HE WAS GOING HOME TO DIE AND
WANTED ME TO TALK ABOUT DEATH
AND DYING ALONG THE WAY.
ONE OF THE THINGS I THINK THAT
IS IMPORTANT TO ALSO -- I'M
HAVING TECHNICAL DIFFICULTIES
AGAIN.
I'M SORRY.
ONE OF THE THINGS WE WON'T TAKE
A LOT OF TIME TALKING ABOUT IS
THE UNIQUE DEVELOPMENT NEEDS AND
IMPORTANT TO HIGHLIGHT
ADOLESCENT AND YOUNG ADULTS GO
THROUGH A TREMENDOUS
PSYCHOLOGICAL AND SPIRITUAL
CHANGES AND ALL THESE WHEN
COMPOUNDED WITH AN ADVANCED
DISEASE IMPACTS HOW THEY'RE
PROCESSING AND HOW THEY'RE
EXPERIENCING THEIR ILL.
-- ILLNESS.
MANY PEOPLE STUDIED EACH ASPECT
BUT WHEN WE TAKE IT INTO
PALLIATIVE CARE IT'S IMPORTANT
FOR INDIVIDUALS TO NOT ONLY KNOW
THE UNIQUE DEVELOPMENTAL NEEDS
BUT ALSO THE PRIORITIES THAT A
PERSON HAS IN TERMS OF
PALLIATIVE CARE.
WE'RE KIND OF ALL OVER THE MAP
IN TERMS OF THE AGE OF THE
ADOLESCENT.
WE WANTED TO KIND OF PULL OUT
TWO SOURCES THAT GIVE GUIDANCE
ON PALLIATIVE CARE AND THE WORLD
HEALTH ORGANIZATION AND THE
ADOLESCENT DEFINITION OF THAT
AND THE NCI'S DEFINITION WHICH
EXTENDS 15 TO 39.
WE LOOK ACROSS MANY DISEASES AND
THEY'RE HIGHLIGHTED HERE.
IN THE CENTER IS THE CUBICLE
THAT SAYS THE LOST TRIBE.
ADOLESCENTS AND YOUNG ADULTS ARE
SOMETIMES NOT -- THERE'S NOT A
HOME FOR THEM AND SO WE NEED TO
KIND OF FIND THAT SPACE AND
THERE ARE MANY PEOPLE WHO ARE
PASSIONATELY WORKING ON
DIFFERENT TYPES OF PALLIATIVE
CARE.
SO WHEN WE THINK ABOUT DECISION
MAKING A COUPLE THINGS I WANT TO
BRIEFLY HIGHLIGHT IS TO ASSESS
THE AGE GROUP'S INDIVIDUAL
PREFERENCES.
WHAT WOULD THEY LIKE THEIR END
OF LIFE TO BE?
AND WHO IS THAT TRUSTED PERSON
THEY WANT TO HAVE THAT WALKS
ALONGSIDE THEM WITH THE DECISION
MAKING THAT IS DONE AND HOW CAN
WE UPHOLD THEIR DECISIONAL
CONTROL PREFERENCES IN THEIR
ABILITY TO HAVE A SAY IN WHAT'S
GOING ON.
THAT'S IMPORTANT FOR US TO
ENGAGE IN DISCUSSIONS INVOLVED
IN THE MEDICAL RESEARCH
DECISIONS OR ONGOING CARE EVENT
AND ADVANCED DIRECTIVES AND END
OF LIFE DECISIONS.
SO THERE'S A STUDY ABOUT
PALLIATIVE CARE NEEDS FOR
ADOLESCENTS AND YOUNG ADULTS
THAT SUMMARIZES 51 STUDIES
BETWEEN 2002 AND 2021.
AND ONLY 18% INCLUDED
NON-MALIGNANT ILLNESSES.
THERE WAS ALSO A DISPARITY IN
THE REPORTING OF RACIAL AND
ETHNIC CORRELATIONS AND IT
HIGHLIGHTED THROUGH THE STUDIES
THE COMPLEX SYMPTOM BURDEN THAT
OCCURS WHICH BEGS THE QUESTION
THAT THE SYSTEMS ARE INTENSIFIED
BY THE PSYCHOSOCIAL THINGS THEOR
PROCESSING AND HIGHLIGHTED THE
PREFERENCE OF ADOLESCENTS AND
YOUNG ADULTS TO ENGAGE IN
ADVANCED CARE PLANNING
DISCUSSIONS EARLIER IN THE
TRAJECTORY OF THEIR ILLNESS AND
REALLY S ME EMPHASIZES THE NEED
OF PSYCHOSOCIAL SUPPORT AND
WE'RE NOT ACCESSING THEIR CARE
OR THEY'RE NOT ACCESSING
PALLIATIVE SERVICES UNTIL LATE
IN THEIR ILLNESSES AND SOMETIMES
NOT HAVING CONSULTS IN THE END
OF LIFE.
AND THEN THERE ARE MALIGNANCIES.
HEMATOLOGICAL MALIGNANCIES
SHOWING UP IN THE LITERATURE
WITH END OF LIFE MEDICAL CARE
AND CLINICALLY AND ANECDOTALLY
WE SEE SOMETIMES THE DECISIONS
ABOUT END OF LIFE ARE NOT EVEN
TALKED ABOUT.
WE DON'T KNOW THE WISHES OF THE
ADOLESCENT OR YOUNG ADULT.
IN VSUMMARY THIS IS A VULNERABL
POPULATION.
WE EMPHASIZE THE PSYCHOSOCIAL
NEEDS AND HOPE THOSE IN THE
SPACE CAN THINK HOW TO
COLLABORATIVELY WORK TOGETHER TO
ADDRESS THEIR PALLIATIVE AND END
OF LIFE NEEDS WITH OUR SPACES
THAT WE'RE IN.
THERE'S A REVIEW THAT EMPHASIZES
NINE INTERVENTIONS.
WE HEARD YESTERDAY ABOUT THE
INTERVENTIONS SCIENCE THAT IS
THERE.
THERE ARE NINE STUDIES THAT WERE
TALKED ABOUT IN THIS REVIEW.
22 ARTICLES WERE HIGHLIGHTED AND
THERE'S EVIDENCE-BASED
INTERVENTIONS AVAILABLE FOR THE
PSYCHOSOCIAL DISTRESS IN
ADDITION TO STRESS MANAGEMENT
AND MINDFULNESS AND LEGACY
INTERVENTIONS DEVELOPED IN THE
LITERATURE AND HAVE PRETTY GOOD
BASE OF LITERATURE TO SUPPORT
THAT IN ADDITION TO THERAPIES
THAT PSYCHIATRISTS AND
PSYCHOLOGISTS ARE VERY
KNOWLEDGEABLE CAN HELP OUR
ADOLESCENTS SUCH AS DIGNITY
THERAPY OR MEANING-BASED
THERAPIES.
WHEN WE THINK OF CONVERSATIONS
WITH THE YOUNG PEOPLE THERE'S A
WHOLE CONSTRUCT OF READINESS
THAT'S IMPORTANT TO TALK ABOUT
AND A FEW YEARS BACK SOME
COLLEAGUES AND I WROTE A PIECE
ON THE ROAD TO READINESS AND
LOOKING AT READINESS FROM THE
PROVIDE PERSPECTIVE AND LOOKING
AT THE PALLIATIVE CARE AND END
OF LIFE DECISION ARE DIFFICULT
AND THE FAMILY MAY BE ON A
DIFFERENT READINESS STEP AS
WELL.
THERE'S A TABLE IN OUR ARTICLE
THAT GIVES YOU SOME
CONSIDERATIONS IF YOU'RE HAVING
TROUBLE INITIATING THE
CONVERSATIONS AND THE READINESS
OF THE ADOLESCENT OR CHILD YOU
ARE TALKING TO.
AND THEN THIS SLIDE IS PRETTY
COMPLEX BUT IT GOES BECOME TO
THE WORK THAT I'VE DONE IN TERMS
OF REALLY STUDYING THE
ENVIRONMENT AND CONSTRUCT OF
READINESS AND READY TO ENGAGE IN
DISCUSSIONS AND DECISIONS ABOUT
THEIR CARE.
THERE ARE THREE MAIN COMPONENTS
FROM A CASE STUDY RESEARCH.
LOOKING AT THINGS FROM A
QUALITATIVE STANDPOINT AND
QUANTITATIVE STANDPOINT FROM
MEDICAL RECORD REVIEWS.
THERE'S RICH DATA THAT SUPPORTS
THE BUILDING OF MODELS.
AND THE FIRST PART IS READINESS
AND COGNITIVE DOMAIN AND
ACCEPTANCE AND LOOKING TO ENGAGE
IN CONVERSATIONS AND THE SLIDE
IS TO CAPTURE HOW DYNAMIC THE
AWARENESS OCCURS IN OUR
CONVERSATION.
WHEN AND THEY GO THROUGH
EMOTIONAL ACCEPTANCE AND ENTER
INTO THE WILLNESS TO ENGAGE IN
CONVERSATIONS.
BUT THAT IN ITSELF CAN SOMETIMES
CLOSE THE AWARENESS AND MOVE TO
A DENIAL IN TERMS OF ACCEPTANCE
AND TALK ABOUT COGNITIVE
DECISIONS AND THEY ALSO WANT TO
TALK ABOUT THEIR ADVANCED
DIRECTIVES AND THIS CAN PUSH
THEM BACK TO OPEN AWARENESS.
WHEN I REALIZE D WHAT WAS
HAPPENING THEORETICALLY IT MADE
MORE SENSE ENTERING INTO A
CLINICAL CONVERSATION WHERE ONE
TIME WE KNOW THE ADOLESCENT'S
THERE AND THEY GET IT AND NEXT
WEEK THEY COME BACK AND IT PICK
UP I DYNAMIC INTERACTION OF THE
READINESS.
ONE THING WE NEED TO DO AND THIS
FILLS IN WITH A GAP IS LOOK AT
CONCEPTUAL FRAMEWORK THAT WE ALL
CAN STUDY ON AND THIS IS BASED
ON MY VISUALIZATION AND IN THE
BOX THERE'S LITTLE PIECES OF ALL
OF YOU WHO HAVE DONE RESEARCH.
6:
AND GUIDE US IN CONVERSATIONS
AND HAVING ITERATIVE
CONVERSATION IS CRUCIAL TO
IMPACT THEIR END OF LIFE AND
QUALITY OF LIFE OUTCOMES.
AND SUPPORTING ADOLESCENTS AND
YOUNG ADULTS AND A PLACE WHERE
WE CAN ADDRESS THE CONCERNS AS
THEY MOVE THROUGH END OF LIFE OR
IN ADVANCED DISEASE.
AND THEN LOOKING AT A BROADER
REACH INCLUDING PERHAPS SOME OF
OUR PATIENTS THAT ARE OUTSIDE OF
OUR WHEELHOUSE BUT THAT MIGHT
STILL BENEFIT FROM WHAT WE'RE
STUDYING.
IF YOU'RE STUDYING ONCOLOGY AND
INCLUDING PEOPLE WITH CYSTIC
FIBROSIS OR ANOTHER DISEASE THAT
MAY FIT.
PRIORITIES FOR THE FUTURE,
BUILDING TRUSTING RELATIONSHIP
AND HAVING PROSPECTIVE STUDIES
AND UTILIZING FRAMEWORK AND
EXPANDING OUR REACH TO
NON-MALIGNANT CONDITIONS.
I'D LIKE TO END WITH AN AFRICAN
PROVERB AND END WITH A QUOTE
FROM A YOUNG ADOLESCENT FROM A
STUDY I CONDUCT AND A COLLEAGUE
RECENTLY REMINDED ME OF THE
PROVERB THAT SAYS IF YOU WANT TO
GO FAST, GO ALONE, BUT IF I WANT
TO GO FAR, GO TOGETHER.
I THOUGHT IT WAS SO APPLICABLE
WHERE WE CAN SUPPORT PEOPLE LIKE
DOMINIQUE WHO SAID TOMORROW'S
NOT ALWAYS PROMISED I JUST WANT
TO LIVE UNTIL I CAN'T.
I LOVE SEEING THIS EVERY DAY.
THANK YOU.
>> THANK YOU.
WE'RE MOVING TO THE Q&A PART OF
THE SESSION.
KATE AND CINDY IF YOU CAN PUT
YOUR VIDEO ON.
I DON'T SEE ANYTHING IN THE CHAT
FROM THE AUDIENCE FIRST TO
PARTICIPANTS IF YOU HAVE
QUESTIONS OF EACH OTHER OR THOSE
PARTICIPATING YOU CAN UNMUTE AND
RAISE YOUR HAND IF YOU HAVE A
QUESTION.
IF NOT I'LL HAVE SOME.
DOES ANYONE WANT TO START?
I CAN START.
I HAVE SEVERAL QUESTIONS UNTIL
PEOPLE THINK OF SOME.
I'LL CHANGE A LITTLE BIT AND ASK
YOU, KATIE, SOMETHING YOU DIDN'T
PRESENT BUT I SAW YOU DID SOME
WORK ON THERE'S AN OPTION THAT
CAN BE IDENTIFIED AND THE FIRST
TO BE CHOSEN HOWEVER, IT'S
IMPOSSIBLE WHEN IT IS IMPOSSIBLE
TO ADOPT SUCH OPTION.
THE SITUATION CAN LEAD TO MORE
DISTRESS WHICH IS COMMONLY
RELATED TO PROLONGATION OF
PATIENT SUFFERING AND DIFFICULTY
IN COMMUNICATION AMONG TEAM
MEMBERS.
CAN YOU PLEASE TALK A LITTLE BIT
ABOUT HOW AND IF THERE IS COPING
STRATEGIES FOR MORAL DISTRESS
AND THOSE SUFFERING IN PICU AND
NICU.
>> THANK YOU FOR THE QUESTION.
IT'S A CHALLENGING AREA.
ONE OF THE KEY DRIVERS RELATE TO
A LACK OF INTERDISCIPLINARY
COMMUNICATION IN TERMS OF
DISCUSSIONS ABOUT REASONS FOR
AND INTENTIONS OF THERAPIES AND
BEING TRANSPARENT ABOUT THE
CONCEPT OF GOAL CONCORDANT CARE.
IT GETS CHALLENGE CANS AND MURKY
WHEN WE GET THE EXTREME ENDS OF
SITUATIONS WITHOUT AN EASY
APPLICABLE, ACCESSIBLE RECOURSE
FOR CHALLENGING PARENTAL
DIFFERENCE BUT I THINK FRAMING
AND EXPLAINING TO STAFF IS ONE
STEP TO ADDRESS AND PREVENT
MORAL DISTRESS AND THERE'S BEEN
THE CONCEPT OF MORAL DIFFERENCE
VERSUS MORAL DISTRESS AND THE
WAY TO MAKE IT MORE EXPLICIT IS
IS WE INCREASING ETHICS LITERACY
AROUND WHAT GOAL CONCORDANT CARE
IS AND I THINK INCREASING
INTERDISCIPLINARY COMMUNICATION
AND TRANSPARENCY WITHIN THE TEAM
IS ONE IMPORTANT THING AND THE
OTHER IS BEING TRANSPARENT WITH
FAMILIES ABOUT REALISTICALLY
FRAMING THE FEASIBILITY OF
ACHIEVING GOAL.
THAT NEEDS TO BE AT THE
FOREFRONT AS DOES PROVIDING THAT
FEEDBACK THROUGHOUT THE TEAM.
>> THANK YOU.
YOU CAN UNMUTE AND ASK YOUR
QUESTION.
>> THANK YOU FOR THE WORK AND
KATIE YOU TALKED ABOUT CONFLICT
AND IT SEEMS TO ME ONE OF THE
AREAS TO DEVELOP IS LESS ABOUT
ETHIC AND SIMPLY MANAGING
CONFLICT.
WHY WOULD WE DO THAT?
CAN'T WE SOLVE IT ALL BY BETTER
ETHICAL DELIBERATION?
AND THINK ABOUT ADJUDICATING
CONFLICT.
>> I BELIEVE HIGH-QUALITY
COMMUNICATION AND MEDIATION
STRATEGIES WILL GO A LONG WAY TO
PREVENT CONFLICT.
AND HOLDING PATIENTS AT THE
CENTER AND TRYING TO HAVE A
PREEMPTIVE CONVERSATION GO A
LONG WAY WITH A PROCESS-BASED
APPROACH AND FRAMING THESE
DECISIONS AS BEING MORE
LEGITIMATE BECAUSE THEY FOLLOWED
THE APPROACHES WHICH SEEM TO BE
MORE ROBUST TO GROUP THINK AND
IMPLICIT BIASES.
THAT WILL GO A LONG WAY TO
PREVENTING CONFLICT.
YOU THINK IT'S INEVITABLE
CONFLICT WILL HAPPEN BECAUSE
WE'RE A PLURALIST SOCIETY AND
THERE NEEDS TO BE A PATH MORE
ACCESSIBLE AND PRACTICAL FOR
CLINICIANS TO THINK ABOUT A PATH
TO ADDRESS IT.
I THINK AND I HOPE THAT WITH
ENGAGING PALLIATIVE CARE AND
ETHICS CONSULTATION EARLY,
TRAINING THE NEXT GENERATION
WITH SOME OF THE SKILLS SO
THEY'RE ARMED TO BE ABLE TO
DEVELOP THERAPEUTIC
RELATIONSHIPS WITH FAMILIES AND
MINIMIZE CONFLICT SO WE CAN
COLLABORATIVELY DEFINE WHAT IS
IN THE CHILD'S BEST INTEREST.
I STILL THINK IF WE DO IT
PERFECTLY AND FANTASTIC
COMMUNICATORS ULTIMATELY THERE
BE CONFLICT AT TIMES.
EVACUATE AN EXIT STRATEGY AND
WE'RE INCREASINGLY FACING STICKY
ETHICAL DECISIONS IN TERMS OF
HOW TO PROVIDE AN ETHICALLY
SUPPORTED PATH FORWARD FOR
PATIENTS AND FAMILIES.
IT'S NOT AN EXACT ANSWER TO YOUR
QUESTION.
I HOPE WE CAN AVOID IT THROUGH
THE STRATEGY US MENTIONED BUT I
THINK ULTIMATELY THERE NEEDS TO
BE A PATH FOR CONFLICT.
>> MAKING SURE WE DON'T BELIEVE
CONFLICT AS A FOUR-LETTER WORD
AND AMONGST THE TEAM NOT JUST
CONFLICT BETWEEN THE TEAM AND
PARENTS BUT NOT ABANDON IT AND
AN AGREE AND THANK YOU FOR THAT
ANSWER.
ONE KEY THING IS CREATING THE
LITERACY AROUND WHAT GOAL
CONCORDANT CARE IS.
AND LOOKING AT THE TEAMS AND
FAMILIES IS A KEY STEP.
>> IS THERE ANYTHING YOU WANT TO
ADD TO THIS?
I SEE YOU HAVE BEEN ABLE TO GET
THE VIDEO.
>> I'M NOT GOING TO ADD ANYTHING
SINCE IT WAS PROBABLY ALREADY
TALKED ABOUT.
GIVEN ALL THE INSIGHT FROM ALL
THE LITERATURE AND HOW YOU
CONSOLIDATED IT, HOW SHOULD WE
GET PEOPLE TO START IMPLEMENTING
HAVING DIFFICULT CONVERSATIONS.
THEY CAN FEEL SCARY THOUGH YOU
OFFERED PLENTY OF EVIDENCE THE
ADOLESCENTS AND YOUNG ADULTS
WANT THEM, HOW DO WE GO FROM
MORE RESEARCH TO MORE
IMPLEMENTATION AND BETTER
PRACTICE?
>> I LOVE THAT QUESTION.
I WOULD SAY SIMPLY CAN I TALK TO
YOU ABOUT THIS AND SEEKING THE
OPPORTUNITY.
IT'S A BEAUTIFUL WAY TO ENTER
INTO A SPACE AND ALLOW THEM TO
GIVE VOICE I'VE SAID THINGS LIKE
WE LEARNED SOME ADOLESCENTS WITH
MORE ADVANCED DISEASE THAN
YOURS.
THEY'VE EXPRESSED CONCERNS ABOUT
X, Y OR Z.
IS IT OKAY IF I TALK TO YOU
ABOUT THAT?
CAN YOU TELL ME MORE AND SEEKING
PERMISSION AND ENTERING THE
SPACE YOU CREATE IN THE CLINICAL
SETTINGS TA ALLOWS YOU TO GO
THERE -- THAT ALLOWS US TO GO
THERE.
WE NEED TO LOOK HONESTLY AT
TIMES WHEN WE SHOULD DOWN THOSE
CONVERSAT
CONVERSATIONS SO THE CHANCES OF
CURE ARE X, Y AND Z.
IN USUAL SOCIAL CONSTRAINT WE
SHUT DOWN THE CONVERSATIONS AND
LOSE THE OPPORTUNITY.
I THINK JUST BEING FLEXIBLE AND
TEACHING OPEN AWARENESS AND
WHERE THEY WANT TO PROCESS SOME
EMOTIONS WITH YOU OR WITH
ANOTHER CLINICIAN AND
RECOGNIZING IT'S A HARD SPACE TO
BE IN.
RECOGNIZING INSIDE OF YOU WHEN
YOU WANT TO JUST SHUT IT DOWN
BECAUSE IT'S TOO HARD FOR YOU
BUT REALIZE IT'S THEIR SPACE TO
PROCESS IT AND HONING IN OTHER
OTHER EXPERTS THAT CAN HELP WITH
THE PSYCHOLOGICAL THINGS THEY'RE
GOING THROUGH IS CRITICAL.
DOES THAT ANSWER YOUR QUESTION,
CHRIS?
>> BEAUTIFULLY.
THERE'S MORE RESEARCH TO DO IN
THE IMPLEMENTATION SCIENCE
SPACE.
>> WE'RE AT THE POINT WHERE WE
IDENTIFY BARRIERS AND
FACILITATORS.
WE HAVE FRAMEWORKS.
WE ARE CLOSER THIS THE
IMPLEMENTATION.
WE HAVE A QUESTION FROM THE
VIDEOCAST.
CAN YOU TALK ABOUT ECMO AND AT
THE START OF THE DISCUSSION AND
APPROACHES TO COMFORT CARE AND
SHOULD WE HAVE AN INSTITUTION
WHERE BEFORE STARTING IT THE
PALLIATIVE CARE CONSULT WAS
MANDATORY.
DO YOU THINK IT SHOULD BE PART
OF WHAT WE DO?
>> YEAH, THANKS FOR THE
QUESTION.
I HAD CONVERSATIONS WITH ECMO
AND AS THE CASES WHERE WE LACK
THE OPPORTUNITY TO DO THAT
BECAUSE IT'S AN INSTITUTED
THERAPY.
WHILE IDEALLY I WOULD LOVE THE
PREEMPTIVE ASPECTS ECMO IS A
COMMON REASON FOR THE THERAPY.
WE NEED A PATH TO DEAL WITH
THINGS ONCE THE BALL IS ROLLING.
IT'S IMPORTANT IN THE PAPER WE
WROTE WE PRESENTED IT AS A
BRIDGE TOWARDS DEFINING A GOAL
AND USING TIME-LIMITED TRIAL IS
ANOTHER PATH OR EXAMPLE OF A WAY
TO FRAME WITH FAMILIES THAT THIS
IS THE FIRST THERAPY WE'RE DOING
FOR SPECIFIC PURPOSE RATHER THAN
AN INDEFINITE MACHINE.
I THINK THOSE THINGS ARE SUPER
IMPORTANT.
I THINK PALLIATIVE CARE SKILLS
SHOULD BE A CORE COMPETENCY CARE
CLINICIANS.
WHILE I APPRECIATE SUB SPECIALTY
CARE AND PEOPLE I CAN LEAN ON IN
MY INSTITUTION IT'S NOT
SOMETHING EVERYONE'S LUCKY
ENOUGH TO HAVE.
THESE ARE SKILLS WE NEED TO
TRAIN IN THE NEXT GENERATION OF
TRAINEES AND SOMETHING WE NEED
TO DO.
IF YOU CAN HAVE PALLIATIVE CARE
INVOLVEMENT FOR ALL PATIENTS ON
ECMO WOULD BE WONDERFUL BUT
WON'T BE FEASIBLE FOR ALL
CENTER.
>> WE'RE ALMOST AT THE HOUR.
I DON'T KNOW IF YOU CAN BRIEFLY
ANSWER THIS QUESTION.
CAN YOU SPEAK MORE ABOUT MORAL
DIFFERENCES VERSUS MORAL
DISTRESS?
>> THERE'S WORK AND THERE WAS
THE CONCEPT COINED BUT A MORAL
DIFFERENCE RELATES TO GOAL
CONCORDANT CARE.
THE FACT WE'RE SUPPOSED TO BE
ALIGN WITH FAMILIES ON THE PATH
AND THE WHOLE POINT OF
CONCORDANT CARE IS WE DO THINGS
THAT IS VALUE- ALIGNED WITH
PATIENTS AND FAMILIES AND THOUGH
IT MAY NOT BE SOMETHING WE DO
FOR OUR LOVED ONES OR WANT FOR
OURSELVES AND DO HAVE OUR VALUES
AS PROVEDERS, WE NEED TO
ACKNOWLEDGE THERE'S POERL --
MORAL DIFFERENCES AND NOT
RELATED TO MORAL DISTRESS WHEN
YOUR FORCED TO PROVIDE CARE NOT
ALIGNED WITH YOUR MORAL COMPASS
AND TRY ALIGN WITH FAMILIES ON
THIS PATH.
THERE'S EXTREME CIRCUMSTANCES
WHERE THE PROFESSIONAL INTEGRITY
AND RESPONSIBILITY TO THE CHILD
COMES INTO CONFLICT BUT A LOT OF
THE WAY AND ARTICULATE AND
DISCUSS AND PALLIATIVE CARE
LITERACY AROUND GOAL CONCORDANT
CARE.
>> I WANT TO THANK THE
PRESENTERS FOR THEIR GREAT TALK.
WE'LL MOVE TO THE NEXT SESSION.
>> THANK YOU ALL.
[NO AUDIO]
>> I'M GOING TO SHARE MY SCREEN
WHICH I'M SORT OF
TECHNOLOGICALLY CHALLENGED SO
EVEN THIS WHICH IS THE EASIEST
THING YOU'RE SUPPOSED TO BE ABLE
TO DO MAY TAKE ME A SEC.
ALL RIGHT.
CAN PEOPLE SEE?
SO THANK YOU, TESSIE AND NICHD
FOR SPONSORING THIS WORKSHOP AND
REALLY FOR ALLOWING US TO HAVE
THE IMPORTANT CONVERSATIONS
ABOUT RESEARCH NEEDS FOR
PEDIATRIC PALLIATIVE CARE AND
WHAT THAT MEANS FOR THE
WORKFORCE.
MY -- WE HAVE LISTENED TO THE
PRESENTATION AND INSPIRED AND
THRILLED I KNOW SO MANY OF THE
INVESTIGATORS AND CLINICIANS AND
PEOPLE ON THE CALL.
ON ONE HAND IT'S INSPIRING.
ON THE OTHER HAND SOBERING.
I AM NOT OLD ENOUGH TO FEEL LIKE
I SHOULD KNOW THE FIELD BUT WE
ARE YOUNG.
THE FIELD STARTED FIRST
RECOGNIZED WE THE AMERICAN BOARD
OF MEDICAL SPECIALTIES TO A
FIELD THAT STARTED IN 1974.
WE KNOW SOMEWHERE THERE ARE
PEDIATRIC PALLIATIVE CARE
SERVICES NOTICE -- IN THE
UNITED STATES AND 80% OF
CHILDREN'S HOSPITAL REPORT SOME
TYPE OF PEDIATRIC PALLIATIVE
CARE.
THE DIFFICULTY IS WE DON'T KNOW
WHAT THOSE PROGRAMS CONSIST OF
IN TERMS OF STAFFING AND KNOW
STAFFING REMAINS VARIABLE AT THE
PROGRAMS AND THE MAJORITY ARE
NOT MEETING WHAT WE COULD
CONSIDER NATIONAL CLINICAL
STANDARDS.
DEFINING THE NEED AND WE HEARD
ABOUT THE NEED FOR PALLIATIVE
CARE AND THE IMPORTANCE FOR
PALLIATIVE CARE AND THE AREAS IN
WHICH PALLIATIVE CARE IS VITAL.
THIS IS FROM ANAR IN A PUBLIC
AWARENESS CAMPAIGN CALLED
CONVERSATIONS MATTER.
THERE WAS A PEDIATRIC PALLIATIVE
CARE COMPONENT AND WHAT WAS
PROMOTED TO FAMILIES AND
SYMPTOMS AND DISCOMFORT OF
STRESS CAN GIVE YOU SUPPORT,
EASE PAIN AND SUFFERING AND
PROVIDE EMOTIONAL AND SOCIAL
SUPPORT THAT SUPPORTS YOUR VALUE
AND CULTURE AND HELP PROVIDERS
WORK TOGETHER.
START OPEN DISCUSSION WITH YOUR
TEAM ABOUT OPTION FOR CARE.
THIS LEVEL CAN BE WRAP AROUND
FOR CHILDREN AND YOU THINK THIS
IS AN AMAZING TOOL FOR ALL
CHILDREN WITH SERIOUS ILLNESS.
WE TALK ABOUT SERIOUS ILLNESS
AND WE HEARD ABOUT IT A LOT OVER
THE LAST COUPLE DAYS WE SHOULD
BE ADVOCATING FOR PALLIATIVE
CARE INVOLVEMENT AND WE HEARD
ABOUT AUTOMATIC CONSULTS AND
MANDATORY AND TRIGGER CONSULTS
OR INVOLVEMENT OF PALLIATIVE
CARE AND WE THINK OF IT AS A
WIDE SCOPE.
WE HEARD ABOUT AND WHAT CRITERIA
WE SHOULD THINK OF CONSULTATION
FOR IMPROVED CARE FOR PERINATAL
AND NEONATAL AND ALL CHILDREN IN
ICU WHO HAVE SERIOUS ILLNESS AND
CHILDREN WITH MEDICAL COMPLEXITY
AND THE IMPORTANCE OF
INTEGRATING FAMILIES AND
SIBLINGS IN THE PALLIATIVE CARE
MOVING FORWARD AND THERE'S A
GROWING POPULATION OF CHILDREN
TECHNOLOGY DEPENDENT AND THERE'S
CANCER AND THERE'S CONGENITAL
HEART DISEASE AND WE'RE TAKING
CARE OF ADULTS WITH CONGENITAL
HEART DISEASE AND THE LIST GOES
UPON WHEN YOU HEAR THIS, YOU
THINK, WOW.
WE TALKED ABOUT MORAL DISTRESS
IN THE LAST SESSION AND THE
DISTRESS WE FEEL AS CLINICIANS
AND PEOPLE WHO WE DON'T THINK
CAN PROVIDE THE CARE TO PEOPLE
THAT ARE IMPORTANT AND FAMILY
MEMBERS WHO WOULD BENEFIT FROM
THIS CARE WHAT DO WE DO WITH ALL
THAT?
IT'S THE BEGINNING OF WORKFORCE
BURNOUT AND DISTRESS.
HOW DO WE MANAGE ALL THE THINGS
WE'RE DOING AND AT THE SAME TIME
THINKING ABOUT ADVANCING THE
IMPORTANT QUESTIONS MOVING
FORWARD.
WHAT I'VE LEARNED IS THE WORDS
WE USED FIRST SEEING FAMILIES 20
YEARS AGO AND COLLEAGUES AND TRY
TO CONVINCE EVERYONE PALLIATIVE
CARE IS IS AN IMPORTANT
NECESSARY CARE TO THOSE WE'RE
SEEK WE TAUGHT OUR FELLOWS, HOW
CAN WE HELP YOU?
WE SHIFTED THAT WORDING TO
SOMETHING MORE PRACTICAL WHILE
THIS IS WITHIN OUR TRAINING AND
SKILL SET IT'S NOT WITHIN THE
SCOPE OF OUR CURRENT CLINICAL
PRACTICE.
FOR CONTEXT I'M AT TEXAS
HOSPITAL I THINK THE LARGEST
CHILDREN'S HOSPITAL IN THE
UNITED STATES.
WE LIKELY HAVE THE LARGEST
NUMBER OF FTE ON OUR PALLIATIVE
CARE SERVICE AND CANNOT
BEGINNING TO MEET THE NEED OF
THE PATIENTS WE'RE SEEING.
WE HAVE AN INSTITUTION THAT
SUPPORTS A PALLIATIVE CARE
CONSULT SERVICE AND FORTUNATE TO
BE ABLE TO BE IN A POSITION
WHERE WE CAN UTILIZE SOME OF THE
TIME OF OUR STAFF AND CLINICIANS
AND FACULTY TO DO PRIMARY CARE
PALLIATIVE CARE EDUCATION AND
SUPPORT RESEARCH WORK WHICH
WE'LL TALK ABOUT IN A LITTLE
BIT.
THERE'S A LOT OF NEEDS FOR
PARTICIPANTS AND FOR OUR
COLLEAGUES IN TEACHING THEM
ABOUT PRIMARY PALLIATIVE CARE
AND HELPING THEM NAVIGATE THE
DISTRESS AND INTRICACIES OF
CHILDREN WITH SERIOUS ILLNESS.
AND THIS NEEDS TO HAPPEN IN THE
HOME AND COMMUNITY AND
COMMUNITY-BASED HOSPITALS AND
ACADEMIC MEDICAL CENTERS IN
WHICH MANY OF US WORK.
WHAT WE DO KNOW ABOUT WHERE
PALLIATIVE CARE EXISTS.
THERE'S BEEN A NUMBER OF STUDIES
THAT LOOKED FROM 2012 WITH A
TEAM LOOKING AT WHERE PALLIATIVE
CARE PROGRAMS EXIST AND WHERE
THEY'RE COMPRISED OF.
IN 2012 WE HAD 70% OF CHILDREN'S
HOMES REPORTED HAVING A
PEDIATRIC PALLIATIVE CARE OF THE
PROGRAMS 41% DIDN'T HAVE A
CHILDREN FTE AND VARIABILITY OF
WHAT THE PROGRAM CONSISTED OF
AND WHAT YOU HAD TO HAVE ON YOUR
TEAM TO BE CALLED A PEDIATRIC
PALLIATIVE CARE PROGRAM.
SOMETIMES IT WAS VERY LIMITED IN
A PART-TIME SOCIAL WORKER AND
SOMETIMES NURSE AND ADVANCED
PRACTICE PROVIDERS AND SOMETIMES
PHYSICIAN.
VERY LIMITED.
IN 2018 THE PALLIATIVE CARE
REGISTRY WAS TRYING TO DIG
DEEPER AND ING 40% WERE MEETING
WHAT WE CONSIDERED NATIONAL
GUIDELINES AND STANDARDS FOR
WHAT PEDIATRIC PALLIATIVE CARE
SHOULD BE FOR OUR PATIENTS AND
FAMILIES.
AND THE ANNUAL BENCHMARK RECORD
GAVE MORE INFORMATION AND 80% OF
PROGRAMS REPORT HAVING A
PEDIATRIC PALLIATIVE CARE
PROGRAM.
AGAIN, LIMITED DATA ON WHAT THE
PROGRAMS CONSISTENT OF AND WHAT
THE RESPONSIBILITIES ARE OF THE
PROGRAM AND WHAT THE FTE IS WHO
FUNDS THEM.
WE ALSO KNOW ABOUT DISPARITY IN
SERVICES.
THE MAJORITY OF PEDIATRIC
PALLIATIVE CARE CLINICIANS WORK
IN ACADEMIC CENTERS WITH THE
LIKELIHOOD OF SERVICES BEING
HIGHER WITH THE LARGER
HOSPITALS.
BED SIZE IS RELEVANT TO WHETHER
THERE'S A LIKELIHOOD YOUR
HOSPITAL HAS A PALLIATIVE CARE
PROGRAM FOR CHILDREN.
RURAL AREAS SUFFER GREATLY FROM
LIMITED SERVICES, HOSPITAL BASED
AND COMMUNITY-BASED SERVICES.
WE KNOW INFRASTRUCTURE FOR HOME
BASED PALLIATIVE CARE AND
LOOKING AT WHAT IT ENTAILS AND
ARE AAMBULATORY SERVICES ENOUGH
AND WE KNOW HOSPICE SERVICES ARE
NOT WIDELY AVAILABLE TO CHILDREN
EVEN IN MAJOR METROPOLITAN
AREAS.
WE KNOW THERE'S LIMITED RACIAL
AND ETHNIC DIVERSITY THAT ELF
TENDS TO FACULTY AND PHYSICIANS
AND COLLEAGUES IN THE HOME.
WE KNOW FROM CONVERSATIONS
YESTERDAY HOW IMPORTANT IT IS TO
PROVIDE CARE TO FAMILIES IN A
COUNTRY AND LANGUAGE APPROPRIATE
WAY.
A THIRD OF THE PATIENTS HAVE
SPANISH AS THEIR PRIMARY
LANGUAGE AND WE STRUGGLE IN
THINKING HOW TO PROVIDE
EQUITABLE CARE.
HOW ARE WE EXPANDING OUR
WORKFORCE?
THERE'S NO GREAT WAY TO GET THE
NUMBER WE MANUALLY CALCULATED IT
AFTER THE DATA AND THERE'S 80
PROGRAMS FROM THE ACCREDITED
TRAINING PROGRAMS THAT WILL
TRAIN PEDIATRICIANS IN HOSPICE
AND PALLIATIVE MEDICINE.
SOME ARE PEDIATRIC ONLY AND SOME
ARE IN A -- ADULT CENTERS.
MANY PEOPLE WHO ENTER PALLIATIVE
ENTER IN A DUAL-TRAINING WAY.
THEY EITHER COMPLETED A
SUBSPECIALTY PROGRAM PRIOR TO
PALLIATIVE OR INTEND TO COMPLETE
A SECOND FELLOWSHIP AFTER THEY
GRADUATE FROM THESE TRAINING
PROGRAMS AND THEY'VE LIKELY TO
SPEND ONLY A PORTION OF THEIR
TIME DEDICATED TO PALLIATIVE
CARE AND THE OTHER IS IN ICU AND
NEONATOLOGY, HOSPITAL MEDICINE
COMPLEX CARE.
IT DOESN'T COME CLOSE TO MEETING
THE CLINICAL WORKFORCE NEEDS WE
HAVE AND GROWING CLINICAL
WORKFORCE NEEDS WE'LL HAVE.
FUNDING FOR THE PROGRAMS IS
VARIABLE.
THERE'S EITHER INSTITUTIONALLY
FUNDED, SOMETIMES BUILT UP AND
THERE'S NO FUNDS FOR THE
PROGRAM AND MAY HAVE THE FACULTY
AND PATIENTS BUT MANY JUST DON'T
HAVE THE FUNDING.
LASTLY, THERE'S GOOD PILOT WORK
BEING DONE ABOUT TRAINING MID
CAREER PHYSICIANS IN A WAY WHERE
THEY COMPLETE COMPETENCY
REQUIREMENTS BUT DON'T HAVE TO
QUIT PRACTICE IN ORDER TO
REGISTER FOR FELLOW.
SHIP.
THEY CAN COMPLETE THE TRAINING
ALONGSIDE THEIR PRIMARY PRACTICE
OVER THE COURSE OF A COUPLE
YEARS DEPENDING ON HOW LONG IT
TAKES AND AS OF NOW, FOR
PEDIATRICIANS THERE ARE NO
ALTERNATIVE TRAINING MODELS.
THIS IS MY RECOMMENDATION OF
ACCREDITED FELLOWSHIPS IN 2008.
THERE WERE FOUR AT THE TIME.
WE'RE UP TO ABOUT 30 THAT TRAIN
ABOUT 40 FELLOWS PER YEAR.
THE PERSON BOARD OF MEDICAL SUB
SPECIALTIES SAY WE HAVE ABOUT
410 PHYSICIANS WHO HAVE TAKEN
THE BOARD FOR PALLIATIVE CARE
FOR PEDIATRICIANS AND THIS
DOESN'T CONSIDER WHO IS RETIRED
OR PRACTICES PALLIATIVE CARE AND
A NUMBER WERE GRANDFATHERED IN
BEFORE THE BOARD SPECIALTY BEGYM
CERTIFIED WE DON'T KNOW HOW MANY
OF THE 410 ARE PRACTICING.
THIS IS A COMPARISON OF THE
SUBSPECIALTY FOR WHICH WE
CONSULT WHERE THERE'S THOUSANDS
IN CARDIOVASCULAR AND
HEMO-NATOLOGY AND A STARK
DIFFERENCE.
THINKING ABOUT THE PIPELINE AND
WHY IT'S IMPORTANT.
WHY AM I TALKING ABOUT CLINICAL
WORKFORCE WHEN WHAT WE'RE
FOCUSSING ON FOR THIS GROUP IS
HOW DO WE GROW A RESEARCH
WORKFORCE AND EXPAND THE NUMBER
OF PEOPLE WHO ARE INTERESTED,
DEDICATED AND ABLE TO BE
PHYSICIAN AND CLINICIAN
INVESTIGATORS FOR PALLIATIVE
CARE?
MOST PEOPLE ON THE CALL, MOST
PEOPLE IN FELLOWSHIP PROGRAMS
REQUIRE THE YEARS AND THERE'S A
PROPORTION OF TIME DEDICATED TO
RESEARCH AND SCHOLARSHIP AND
MANY INVESTIGATORS GO THROUGH
THE PROGRAMS AND DEVELOP
RESEARCH SKILLS AND IT'S A
TRAINING PROGRAM IN GENERAL THEY
TEND TO ATTRACT THOSE MOST
FOCUSSED ON CLINICAL MEDICINE.
THE NUMBER OF APPLICANTS EVERY
YEAR WHOSE FOCUS IS IN CLINICAL
INVESTIGATION AND TRANSLATIONAL
INVESTIGATION AND IMPLEMENTATION
SCIENCE IS LOW.
IT'S A RARE CANDIDATE FOCUSSED
ON BUILDING A CAREER IN CLINICAL
RESEARCH.
THERE'S RARELY FUNDING.
EVEN IF WE HAD ONE TO EXTEND TO
DO ACADEMIC RESEARCH WORK PAST
THE FIRST YEAR THIS MEANS THE
TRADITIONAL ENTRY WAY IS
DIFFICULT TO RECRUIT FOR,
DIFFICULT TO STAINS.
-- SUSTAIN.
WE HAVE THIS COMPETING NEED FOR
PALLIATIVE CARE CLINICIANS.
WE NEED THEM IN THE COMMUNITY
AND IN HOSPICE AND ROLES IN
HOSPITAL-BASED PROGRAMS AND NEED
THEM TO THINK ABOUT BECOMING THE
NEXT SET OF INVESTIGATORS.
THERE ARE MANY PEDIATRIC SUB
SPECIALTY PROGRAMS THAT DO NOT
FILL THEIR FELLOWSHIP SPOTS
EVERY YEAR.
THE CLINICAL NEEDS REMAIN HIGH.
THERE ARE MORE AND MORE PRESSURE
FOR PHYSICIAN TO SEE MORE
CLINICS AND THE UNFUNDED
RESEARCH TIME IS SHRINKING.
IT'S HARDER AND HARDER TO
ADVOCATE FOR OUR FACULTY TO HAVE
UNFUNDED TIME.
WE HAVE PARTICIPATED IN THE
MAJORITY OF PALLIATIVE CARE
CENTER AND COST SHARED EVERY
ONE.
THIS IS NOT SOMETHING MOST
INSTITUTIONS CAN DO.
WORKFORCE BURNOUT IS REAL AND
SOMETHING WE NEED TO STUDY AND
MITIGATE.
WE NEED TO THINK OF CAREER
TRAINING OPPORTUNITIES FOR MID
CAREER PHYSICIANS.
LASTLY, PEDIATRIC CARE PROGRAMS
UTILIZE DOLLARS TO FUND A
SUBSTANTIAL PORTION OF THE WORK
WE DO AND MAKES FUND RAISING FOR
RESEARCH WITH THESE SAME
INSTITUTIONS DIFFICULT.
AND CONSIDERATIONS PHOR THE
FUTURE.
WE NEED SOME WORK TO DEFINE
PALLIATIVE CARE NEEDS AND THE
WORKFORCE WE NEED TO PROVIDE
OPTIMAL CARE.
WE CANNOT RELY ON PROGRAMS AND
SERVICES TO DO THE WORK THAT
NEEDS TO GET DONE AND NEED TO
THINK WHERE THE TRAINING NEEDS
TO HAPPEN AND WHO NEEDS TO DO IT
AND HOW WE MIGHT NEED TO
REUTILIZE THE RESOURCES WE HAVE.
WE NEED TO THINK ABOUT PATHWAYS
AND HOW TO ADVOCATE FOR
INVESTIGATOR-RESEARCH FUNDING
FOR OUR JUNIOR INVESTIGATORS WHO
OFTEN DON'T HAVE TIME TO
CONTINUE THEIR RESEARCH WORK.
WE NEED RECOGNITION FROM FUNDERS
AND OUR HOSPITAL-BASED ACADEMIC
TEAMS THE FIELD IS YOUNG AND
EMERGING AND NEEDS CREATIVITY
AND HOW TO THINK ABOUT FUNDING
EVALUATIONS AND GO ABOUT GRANT
REVIEW AND PROMOTION COMMITTEES.
WITH PRIOR NIH FUNDING THE
NUMBER WHO ARE FULL PROFESSORS
THE NUMBER IS SMALL AND MANY
PLACES EXCLUDE YOU FROM REV
REVIEWING A GRANT FROM YOU EVER
COLLABORATED AND MANY KNOW WE
COLLABORATED WITH SO MANY THE
LIST BECOMES SUBSTANTIAL.
THANK YOU SO MUCH AGAIN TO
DR. OCTOBER FOR ORGANIZING THIS
AND NICHD FOR SPONSORING IT AND
FOR THE ORGANIZATIONS THAT WE'RE
ALL PART OF AND DOING THE WORK
IN WORKFORCE DEVELOPMENT.
ALL THAT DO THIS EVERY DAY AND
CERTAINLY THE PATIENTS AND
FAMILIES THAT INSPIRE US ALL.
THANK YOU.
>> THANK YOU, TAMMY.
CAN YOU HEAR ME?
>> YES.
>> I'LL TAKE QUESTIONS WHEN YOU
JOIN US IN THE PANEL.
I'LL ASK YOU TO STAY WITH YOUR
CAMERA ON AND INVITE THE OTHERS
TO JOIN US FOR THE LAST SESSION.
THANK YOU ALL FOR YOUR STAYING
POWER.
PLEASE COME ON AND TURN YOUR
CAMERAS ON.
WE'LL TRY TO KEEP IT SHORT IN
ANSWERS.
WE'RE ASKING YOU THE AUDIENCE TO
HELP GUIDE US IN ANSWERING THESE
QUESTIONS.
SO WE'RE GOING TO USE WORD
CLOUD.
SCAN THE QR CODE THERE'S GOING
TO BE THREE QUESTIONS.
WE'LL ANSWER ONE AT A TIME AND
DISCUSS IT WITH OUR PANELISTS AN
PUT THE NEXT QUESTION ON.
PANELISTS BEHIND THE SCENES ARE
FREE TO ANSWER AS WELL.
USING ONE WORD WHAT POPULATION
HAS THE MOST PRESSING NEED FOR
RESEARCH INVESTIGATION?
THIS COULD BE INFANTS OR
FAMILIES.
YOU HEARD FROM FOLKS TODAY.
I'LL LEAVE IT UP FOR A MINUTE OR
UNTIL WE STOP GETTING RESPONSES.
>> LOOKS LIKE WE'RE SLOWING DOWN
A BIT.
CHRIS OR RENE OR TAMMY, PLEASE
GIVE US YOUR THOUGHTS ABOUT
THIS.
LOOKS LIKE FAMILY AND CAREGIVERS
AND PERINATAL MARGINALIZED ARE
SOME OF THE HIGHEST THINGS OUR
AUDIENCE HAVE TOLD US ARE
IMPORTANT.
I'D LOVE YOU CRYSTAL OR RENE TO
HELP SHARE YOUR THOUGHTS.
>> I DISCLOSED BY BIAS.
I'M A NEONATOLOGIST AND SPEND
TIME IN THE SPACE BUT IT'S
ALWAYS CURIOUS TO ME AND I CAME
TO THE FIELD IN 2006 AND CURIOUS
TO ME HOW LITTLE RESEARCH WAS IN
INFANTS WHEN THEY WERE SO LIKELY
TO DIE IN THE FIRST FEW DAYS OF
BIRTH.
THERE'S OPPORTUNITIES IN THE
SPACE AND WE HAVE FETAL
INTERVENTION.
THERE'S MULTIPLE OPPORTUNITIES
FOR COLLABORATION AND DRAWING
OFF RECEIVES THAT ARE IN OTHER
SPACES BUT WE HAVEN'T BEEN DOING
THAT IN A CONCENTRATED WAY.
I SUPPORT INCREASED FOCUS ON THE
PERINATAL POPULATION AND GOES
OUTSAYING FOR ME IT'S ABOUT THE
PATIENTS AND FAMILY.
>> IN THE NON-TRADITIONAL
POPULATIONS AND IT WAS ALL ABOUT
CANCER AND PATIENTS WITH ICU OR
CONGENITAL HEART DISEASE, THERE
ARE POPULATIONS THAT HAVE BEEN
UNDER SERVED WHEN IT COMES TO
THINKING ABOUT INVESTIGATION.
I'LL ALSO SAY WE CANNOT -- MY
ROLE IN INVESTIGATIVE PALLIATIVE
CARE IS FOR THE QUESTIONS TO BE
ASKED AND ANSWERED AND THE
PROBLEM IS WE DON'T HAVE THE
WORKFORCE IN PERINATAL.
IF WE THINK WE'RE SHORT IN
PEDIATRIC PALLIATIVE, PERINATAL
THERE'S A SMALL NUMBER OF PEOPLE
TRAINED WHERE PEOPLE CAN HAVE
ACCESS TO PATIENTS TO BE ABLE TO
ANSWER THE QUESTIONS.
>> I THINK THE ANSWERS MAP OUT
AS A PROVIDER OF PALLIATIVE CARE
IS SUFFERING PATIENTS.
I'M EMBARRASSED AS A CLINICIAN
TO 20 YEARS INTO DOING THIS AND
WALKING INTO ROOMS WHERE A
PATIENT IS SUFFERING FROM
PHYSICAL DISTRESS AND WE ARE
TAKING EDUCATED GUESSES ABOUT
HOW TO MITIGATE THOSE SYMPTOMS.
I THINK THAT IS TO ME TRANSCENDS
PARTICULAR GROUPS TO A BROADER
PROBLEM THAT ARE SYMPTOM
STRATEGIES WHERE TOO MANY
CHILDREN ARE INADEQUATE AND HAS
REPERCUSSIONS.
AND I'VE TALKED TO PARENTS AND
THEY SAID IF YOU CAN MAKE MY
CHILD COMFORTABLE YOU'LL HAVE
DONE ME AND MY FAMILY A HUGE
SERVICE.
>> I'LL UNDER SCORE THE WORD
MARGINALIZED AND MAKING SURE THE
LIVED EXPERIENCE GETS
HIGHLIGHTED AND EXPANDING BEYOND
THE CHILD AND FAMILY SIBLINGS
AND CAREGIVERS, THAT'S ALL IN
OUR RESEARCH WHEELHOUSE AND I'M
EXCITED TO SEE THAT UP THERE AND
THINKING WHO WE HAVEN'T HEARD
FROM YET AND APPLYING OUR SKILLS
THERE.
>> THANK YOU.
SO USING THE SAME APP WE ASKED
ABOUT THE WHO.
WHAT SETTING IS CURRENTLY
MISSING OR NEEDS MORE ATTENTION?
I PUT EXAMPLES THERE HOSPICE,
UCU, COMMUNITY, TELL US WHAT
WE'RE MISSING.
HOSPICE IS IN OUR FACE.
WE'RE SEEING HOME AND HOSPICE
AND COMMUNITY AND CURIOUS WHAT
YOU THINK ABOUT THAT AND THE
BARRIERS POTENTIALLY TO
CONDUCTING RESEARCH IN THESE
SETTINGS.
>> I'LL THRILLED TO SEE THE
VARIETY OF ALL PLACES WHERE OUR
RESEARCH NEEDS TO TOUCH AND WANT
TO MAYBE TAKE A MOMENT TO
HIGHLIGHT THE WORK OF JACKIE
BOYDEN DOING WORK IN WHAT
FAMILIES NEED IN THE HOME AND
HOSPICE COMMUNITY SETTING.
THAT'S SUPER IMPORTANT AS IS ICU
AND ACROSS THE CARE SPECTRUM.
>> THANK YOU.
THE CHALLENGES ARE THE ONES WE
FEEL AND THERE WAS CONVERSATION
IN THE BEREAVEMENT AND FAMILY
AND SIBLING DISCUSSIONS EARLIER
ABOUT FAMILIES JUST BEING
STRETCHED AND HOW TO DO WE
SUPPORT THEM AND COMPENSATE
FAMILIES ACTIVELY PARTICIPATING
IN RESEARCH AND ENGAGE FAMILIES
WHO ARE UNABLE TO FIND FIVE
MINUTES TO PARTICIPATE IN A
QUALITATIVE STUDY OR IB A
RESOURCE SURVEY.
HOW DO WE THINK OF THOSE UNDER
REPRESENTED AND WE ARE TRYING TO
SEND OUT SURVEYS BY E-MAIL BUT
WHAT IF YOU DON'T HAVE AN E-MAIL
OR PHONE OR ARE NOT ABLE TO DO
THE SURVEY IN YOUR PREFERRED
LANGUAGE.
THE CHALLENGES ARE SIGNIFICANT
BUT I AGEE WE NEED TO THINK
ABOUT -- WE DON'T KNOW WHAT
WE'RE DOING IN THE HOME IN HOSS
PIT AND COMMUNITY AS CLINICIANS.
I DON'T THINK WE KNOW WHAT
FAMILIES NEED AND WHAT'S GOING
TO BE THE MOST IMPORTANT AND
VALUABLE TO THEM AND WE NEED
HEAR FROM THEM AND THE
CHALLENGES WHILE RESPECTING THE
TIME AND THE THINGS THEY'RE
GOING THROUGH IS DIFFICULT.
>> AND NEED TO STUDY THE STAFF
AND IF YOU THINK THE ACADEMIC
PEOPLE ARE STRETCHED, THOSE
PEOPLE ARE OFTEN MORE STRETCHED,
HOME FIRST -- NURSES, ETCETERA.
I DON'T KNOW HOW MANY TRIED TO
DO RESEARCH WITH GENERAL
PEDIATRICIANS.
IT'S EASIER TO DO RESEARCH WITH
ICU DOCTORS THAN GENERAL
PEDIATRICIANS.
THEY HAVE SEVEN MINUTES.
AND UNDERSTANDING WHAT'S WORKING
AND NOT WORKING AND WHAT
SUPPORTS THEY NEED ALSO BRINGS
THE CHALLENGES OF TIME
PRESSURES.
>> MY THINKING EPIDEMIOLOGICALLY
AND RESEARCHER AND ALMOST ALL
DEATHS OCCUR IN HOSPITAL
SETTINGS AND EVEN THE CHILDREN
WHO HAVE CHRONIC CONDITIONS
THOUGH THERE'S BEEN A SHIFT TO
INCREASINGLY HAVING THAT HAPPEN
AT HOME, MANY OF THE KEY EVENTS
ARE OCCURRING IN HOSPITALS WITH
A CRISIS AND MAYBE DECISION TO
GO HOME.
WE'RE MIFK THE BOAT IF WE'RE NOT
LOOKING AT HOSPITALS.
THAT SAID THE HOME SETTING IS
WHERE MOST RESIDE IN THE YEAR
PRIOR TO THEIR DEATH.
OVER 90% OF THE TIME IN THE LAST
YEAR OF LIFE WILL BE AT HOME AND
THE CRISIS OF HOME NURSING WHILE
I'D LIKE TO ZERO IN ON HOSPICE
THE NATION CRISIS IN THE HOME
NURSING SYSTEM IS TRAGIC AND
HAVING INCREDIBLE REPERCUSSIONS
FOR WHAT KIND OF CARE ANY FAMILY
CAN RECEIVE IF THEY HAVE A CHILD
WHO NEEDS CARE IN THE HOME
SETTING.
ALL THESE ARE WONDERFUL ANSWERS
AND ONE CAN TAILER IT DEPENDING
ON THE WORKERS OF CARE AND
EMPHASIS ON RELIGIOUS
COMMUNITIES AND MORALITY.
ALL THOSE WILL BE KEY MODIFIERS
AND THERE'S CARE PROVIDED IN THE
HOSPITAL SETTING AT KEY MOMENTS
AND LIVING MOST THEIR LIFE AT
HOME IF THEY'RE NOT INFANTS WHO
HAVE JUST BEEN BORN.
>> THANK YOU.
THAT TIES IN BEFORE WITH YOUR
THOUGHTS BEFORE ABOUT SUFFERING.
THANK YOU.
THIRD AND LAST OF THE
INTERACTIVE PIECE AS WE THE MOST
INTERESTING TOPIC AND WE HEARD
THINGS WE CAN AND SHOULD BE
DOING.
WHAT'S MOST PRESSING FOR US.
WHAT'S MOST PRESSING FOR US?
I LOVE WE STARTED THE DAY
YESTERDAY WITH EQUITY AND WAS
WOVEN THROUGH SO MANY TALKS AND
LOOKS LIKE IT'S STILL CENTRAL TO
THE CARE WE DELIVER AND RESEARCH
WE SHOULD BE THINKING ABOUT.
AS THEY'RE STILL COMING IN WHO
IS WILLING TO GO FIRST AND TELL
US WHAT THEY THINK ABOUT THESE
IDEAS?
>> I HAVE NO ARGUMENT WITH ANY
OF THEM.
I DON'T KNOW WHAT TO SAY OTHER
THAN YES, I SUPPORT ALL THOSE
THINGS.
THEY ALL FEEL VERY IMPORTANT.
>> AND HAVE TO PRIORITIZE AND
THINKING WHERE DO WE PUT OUR
RESOURCES AND THINK ABOUT IN
TERMS OF OUR PRIORITIES.
>> IT'S A TOUGH SPACE.
THE POPULATIONS WE TAKE CARE OF,
THIS IS A LONGITUDINAL ILLNESS
FOR MANY OF THEM THAT OCCURS
OVER YEARS.
EVEN ON A FAMILY BEREAVEMENT
SIDE THIS IS WORK THAT COULD BE
DONE OVER A DECADE OR MORE WITH
THE SAME PATIENT AND FAMILY AS
THE CENTER.
HOW DO WE THINK OF PRIORITIZING
LIMITED RESOURCES FOR FUNDING TO
ANSWER QUESTIONS WE MAY NOT GET
TO FOR 10 PLUS YEAR.
IF I HAD A BUCKET OF MONEY, I
WOULD SAY WE HAVE HUNDREDS OF
QUESTIONS TO ANSWER THAT HAVE A
HIGH DEGREE OF PRIORITY THAT
MEANS SOMETHING TO SOMEONE AND
WE SHOULD ANSWER THE ONES WE
SHOULD ANSWER.
THERE'S A NUMBER OF THINGS WE
CAN GET TO TO START.
THAT'S MY CORNER OF THE WALL
PHILOSOPHY.
WHAT LOW HANGING FRUIT YOU GO
AFTER FIRST WHEN YOU'RE TRYING
TO GET BUY IN.
SCIENTI
SCIENTISTS ANY THOUGHTS TO WHAT
TAMMY SAYS?
WHAT ARE THE LOW-HANGING FRUITS?
>> I GUESS I HAVE A DIFFERENT
PERSPECTIVE WHICH IS I THINK
MANY OF US HAVE BEEN DOING WORK
THAT'S HARD TO DO.
WE TACKLE COMPLEX STICK YO
PROBLEMS SOMETIMES IMPERFECTLY.
I LOVE EQUITY'S AT THE CENTER
AND THAT'S A STRENGTH OF WHERE
WE NEED TO HEAD IN OUR FOCUS AND
A LOT OF THAT HAS TO DO WITH
COMMUNITY-BASED RESEARCH
CO-PRODUCTION AND INTERVENTIONS
AND THEY GO HAND IN HAND AND I
SEE THEM AS WHERE WE NEED TO GO
IN THE FUTURE AND HOW DO WE MAKE
SURE WE HAVE RESEARCH EERS AND
INVESTMENT IN CAREER DEVELOPMENT
AWARDS AND HELPING PEOPLE ON
THEIR CAREER TRAJECTORY AND
INTERPROFESSIONAL RESEARCHERS
ARE THINGS I WOULD EMPHASIZE.
>> CHRIS OR RENE, ANYTHING TO
ADD?
>> I'LL ZONE IN ON THE SUFFERING
OF THE CHILD THOUGH A LOT OF MY
WORK IS IN THE SUFFERING OF THE
FAMILY AND CAREGIVERS OF VARIOUS
KINDS.
AND WHEN MY CHILD WAS SUFFERING,
ALMOST EVERYTHING ELSE DIDN'T
MATTER AND THAT HAS TO BE SOLVED
BEFORE I CAN THINK OF EVERYTHING
ELSE I'M DOING.
THAT FIELD LIKE A REALLY
MEANINGFUL PRIORITY.
JAMIE HAS GOOD IDEAS ABOUT
MEDICATIONS.
WE HEARD MULTIPLE SPEAKERS TALK
ABOUT HOW MOST THE PATIENTS ARE
ON IS SIX TO 12 TO 18
MEDICATIONS.
IT FEELS LIKE THERE'S IMPORTANT
WORK TO BE DONE IN THIS SPACE OF
SYMPTOM MANAGEMENT.
>> I ECHO THAT.
NIN-FUNDED SCIENTISTS OVER THE
YEARS WHERE DO I THINK SCIENCE
CAN PARTICULARLY HELP OPPOSED TO
ADVOCACY OPPOSED TO BUSINESS
ACUMEN OPPOSED TO WORKFORCE AND
HEALTH SERVICES RESEARCH.
I THINK THE LITTLE WORD THAT
SAYS INTERVENTION SYMPTOMS AN
WHAT IS IMPORTANT IN RELIEVING
SUFFERING IN CLEAR DEFINED
POPULATIONS AND WITH A DEFINED
SOURCE OF THE SUFFERING IS
PARAMOUNT OF IMPORTANCE AND IF
WE GAIN KNOWLEDGE IN THE SPACE
IT'S APPLIED EQUITABLY.
I THINK WE ALWAYS WANT EQUITY TO
BE IMPROVING THE OUTCOMES PEOPLE
ARE HAVING AND I'M WORRIED WE
DON'T HAVE THE MEANS TO IMPROVE
THEM.
BETTER WAYS TO DO MANY OF THE
THINGS THAT HAVE BEEN DISCUSSED
TODAY AND YESTERDAY AND MAKE
SURE THEY'RE BEING DONE IN
MULTIPLE PLACES.
>> WELL, THANK YOU.
YOU GUYS ARE AMAZING ADVOCATES
FOR OUR RESEARCH AND THIS CANNOT
BE DONE WITHOUT YOUR LEADERSHIP
AND RESEARCH AND THINKING ABOUT
THE TOPICS AND THEY'RE HELPFUL
FOR US TO THINK ABOUT AS WE
THINK WHERE WE'LL PUT OUR
RESOURCES IN THE FUTURE I WANT
TO SAY THANK YOU TO GUYS AS OUR
PANELIST AND EVERYONE LAST TWO
DAYS.
THE FELLOWSHIP HAS BEEN AMAZING
SO SPEND TIME WITH THOUGHT
LEADERS AND FOLKS WHO I HAVE
RESPECTED IN THE FIELD FOR AS
LONG AS I'VE BEEN IN THE FIELD.
YOU REALLY BROUGHT HOME A LOT OF
MESSAGES TO US THAT ARE REALLY
IMPORTANT FOR US TO THINK ABOUT
WHERE WE GO IN THE FUTURE AND
SPENT TIME ALSO TALKING ABOUT
THE DEPTH OF THE RESEARCH THAT
WE'VE ALREADY ACCOMPLISHED THUS
FAR.
SO WITH THAT I JUST WANT TO SAY
THANK YOU FOR YOUR TIME.
THANK YOU TO ALL OF YOU OUT
THERE WHO JOINED US FOR THE LAST
TWO DAYS.
WE NEED YOU TO KNOW THIS IS
RECORDED AND AVAILABLE ON
VIDEOCAST LIKE IN PERPETUITY.
IF YOU DIDN'T CATCH PIECES OR
TEAM MEMBERS DIDN'T CATCH
PIECES, LET THEM KNOW IT'S
AVAILABLE.
WE RECOGNIZE THE DAY IS NOT EASY
FOR EVERYONE AND ESPECIALLY
THOSE CELEBRATING THE HOLIDAYS
SO WE APPRECIATE THAT YOU FOUND
TIME TO SPENDIUS OVER THE LAST
TWO DAYS.
-- SPEND WITH US OVER THE LAST
TWO DAYS.
I MENTIONED THIS YESTERDAY AND
TO SCAN THE QR CODE AND THE
INTENT TO PUBLIC INFORMATION
ABOUT THE CONSORTIUM FOR
PALLIATIVE CARE ACROSS THE LIFE
SPAN AN ROHAN STARTED OUT
TELLING US ABOUT THE COMMITMENT
TO SERIOUS ILLNESS AND
PALLIATIVE CARE AND THIS
CONSORTIUM IS A TRANS NIH
ATTEMPT TO REALLY LOOK AT PAFLT
CARE ACROSS THE LIFE SPAN AND
SCAN THE QR CODE AND THERE BE
MORE INFORMATION IN THE NEW
YEAR.
WITH THAT I'M INDEBTED WITH YOU
FOR SPENDING TIME WITH US AND
SHARING YOUR KNOWLEDGE.
IF WE DIDN'T GET TO YOUR
QUESTION, CONTACT ME,
TESSIE.OCTOBER@NIH.gov AND CAN
GET THEM TO THE SPEAKER. 4702 03:43:32,532 THANK YOU AGAIN.