OKAY GOOD MORNING EVERYBODY. AND
NOW I'M A WELCOME EVERYBODY TO
THIS FIRST HEARING.
AS WE REFLECT BACK ON THE
HISTORIC PASSAGE OF. THE END OF
LIFE BILL.
AND FIRST OF ALL I WANT TO
THANK YOU FOR COMING FOR THE
INTEREST IN FOR MY FELLOW
COMMITTEE MEMBERS FOR BEING A
PART OF THIS.
THESE PEOPLE KNOW WHEN WE PASSED
THIS BILL LAST YEAR. YEARS AGO
ONE OF THE THINGS WE AID WAS WE
WERE EVERY YEAR WE WOULD HAVE A
HEARING TO BE ABLE TO LOOK AT.
HOW IS IT BEING IMPLEMENTED
WATER PEOPLE'S EXPERIENCE HOW
ARE THINGS COMING ALONG WE WANNA
BE IS?
INTENTIONAL AND CAREFUL AS AS
WE GO FORWARD ANYTIME WE DO
REALLY BIG POLICY AT THINGS OUR
RESPONSIBILITY AS POLICY MAKERS
TO CONTINUE TO CHECK BACK TO SEE
HOW IT'S GOING.
AND I WANT TO ACKNOWLEDGE WHILE
A WHILE OUR RULES DON'T ALLOW
NON MEMBERS TO SET UP BY THE
DYESS WITH US I WANT TO
ACKNOWLEDGE THE HERE WITH US IS
SENATOR LOIS WOKE. WHO IS A KEY
A PERSON AND IN THE PASSAGE OF
THIS COULD NOT HAVE BEEN DONE
WITHOUT HER?
ONE OF THE HER FINAL THINGS AS
SHE LEFT THIS BUILDING GUESTS
PLEASE A ROUND OF APPLAUSE.
A HUGE CHAMPION IN A PUBLIC
SERVANT AT ONE TIME MY SENATOR.
HUNT AND I DON'T THINK ANYBODY
GETS A BETTER EXAMPLE THE PUBLIC
SERVANT IN THE STATE OF
CALIFORNIA A WHEN I FIRST MET
LOS AND YOU TELL ME ABOUT ONE OF
HER EARLIEST EXPERIENCES WAS
BEING A SOCCER COACH FOR
ADOLESCENTS. NOT GONNA SET HER
COURSE FOR BEING ABLE TO DEAL
WITH POLITICS.
BOTTOM.
IT. HAS TO OFFER.
SO FIRST UP SO WE'RE GONNA
AGAIN THIS IS NOT SOMETHING
THAT.
DOES NOT POLICY COMMITTEES
SOMETHING THAT WORD WE'RE
LOOKING AT.
WE'RE GONNA HAVE AN OVERVIEW OF
THE DATA FROM DEPARTMENT OF
PUBLIC HEALTH WE'RE GOING TO
HAVE THE MEDICAL PROVIDER
EXPERIENCE WE'RE GONNA HAVE TO
HEALTHCARE SYSTEM EXPERIENCE.
WE'RE GOING TO HEAR FROM THE
HOSPICE WE AND WE'RE GOING TO
HEAR FROM PATIENTS AND THEN WILL
HAVE HOPEFULLY ABOUT TEN MINUTES
FOR PUBLIC COMMENTS.
SO AS WE GO FORWARD ONE BEEP
MINDFUL OF TIME AND AND KNOW
THAT THIS IS A IMPORTANT ISSUE
THAT PEOPLE ARE FOR EAGER TO
TALK ABOUT SO I THINK FIRST UP
WILL HAVE A. DEPARTMENT OF
PUBLIC HEALTH I THINK WE HAVE DR
JIM GREEN HERE WITH US TODAY.
I SHOULD SAY THE MEMBERS THE
MEMBERS WITH ME TODAY ARE US ONE
MEMBER BILL QUIRK ASSEMBLY
MEMBER MARK STONE ASSEMBLY
MEMBER MARC LEVINE WHO ARE ALSO.
ALL.
HELPFUL IN THIS PROJECT IN
BEFORE WE START WITH MEMBERS
WOULD YOU LIKE TO MAKE ANY
OPENING COMMENTS ON THIS.
WELL.
THANK THE CHAIR FOR ALL.
.
I WANT TO THANK THE CHAIR FOR
HER ROLE.
THE BILL HAD STALLED.
.
THERE WAS NO ONE BETTER TO
PRESENT THE CASE THAT ARE CHAIR.
A BECAUSE SHE HAD EXPERIENCE
WITH THIS ARE IN HOSPICE CARE.
SELL I WANNA THANK YOU VERY MUCH
FOR BEING THE.
AUTHOR OF THE SPELL.
YEAH I JUST OF IT WOULD ALSO
LIKE TO THANK A SOMBER EGGMAN.
OF AND SENATOR BALK ON THAT
THEIR LEADERSHIP ON THIS ISSUE.
THIS WAS.
.
IMPORTANT ISSUE THAT CAME UP AND
WE'VE SEIZED A MOMENT TO HELP.
A LOT OF CALIFORNIANS
AND THE.
THE FEEDBACK I'VE RECEIVED
ANECDOTALLY FROM FAMILY MEMBERS
FROM PEOPLE IN MY COMMUNITY HAS
BEEN OVERWHELMINGLY POSITIVE
ABOUT THE PEACE OF MIND. THAT
THIS IS BROUGHT T FAMILIES I
THINK IT'S IMPORTANT FOR US TO
REVIEW THE DATA. AND UNDERSTAND
HOW WE CAN MAKE THIS WORK FOR
ALL CALIFORNIANS AS BEST AS
POSSIBLE AND I APPRECIATE ALL OF
THE WITNESSES WHO ARE COMING
FORTH WITH TESTIMONY TO HELP US
DO THAT.
THANK YOU.
DR GRANT GOOD MORNING
CHAIRPERSON AND ASSEMBLY
MEMBERS.
THE IMPLICATION WAS FOR THE
CALIFORNIA DEPARTMENT OF PUBLIC
HEALTH CDP H. TO SHARE ARE
EXPERIENCED IN THE CONTEXT.
THIS CD PH WAS THE DEPARTMENT
THE PUBLISHED DATA REPORT ON THE
ACT ENACTED AS AB FIFTEEN IN THE
TWO THOUSAND FIFTEEN TWO
THOUSAND SIXTEEN.
EXTRAORDINARY SESSION OF THE
LEGISLATURE.
SO SOME SALIENT FACTS.
HEALTH AND SAFETY CODE SECTION
FOUR FOUR THREE POINT ONE NINE.
DELINEATES THE DATA INFORMATION
REPORTABLE UNDER THE ACT
THE MANNER IN WHICH SHALL BE
COLLECTED.
S. WELLS PRIVACY PROTECTIONS
AFFORDED TO PARTICIPANTS
AND THEIR HEALTHCARE PROVIDERS.
FORMS ARE SUBMITTED TO SEE THE
PITCH CENTER FOR HEALTH
STATISTICS IN INFORMATICS.
CHOOSE THE.
BY CONFIDENTIAL FACTS.
SECURE EMAIL ARE YOU S. MAIL AND
ARE REQUESTED TO BE MARKED AS
CONFIDENTIAL.
FORMS PROCESS BY AT MOST FIVE
CHOOSING EMPLOYEES ARE SCANNED.
AND THEN SCORED STORED SECURELY
CONSCIOUSLY PROMISES IN THE
THOMAS.
THE FIRST PUBLISHED REPORT
REPRESENTS STATUS REPORT TO CPP
H. FROM THE END OF LIFE ACT
MANDATED. POSITION REPORTING
FORMS.
RECEIVE BETWEEN JUNE NINTH TWO
THOUSAND SIXTEEN AND DECEMBER
THIRTY FIRST TWO THOUSAND
SIXTEEN.
AND REFLECT INFORMATION ON
INDIVIDUALS WHO ARE PRESCRIBED
AID IN DYING DRUGS IN TWO
THOUSAND SIXTEEN.
THE INFORMATION COLLECTED HAS
BEEN AGGREGATED TO PROTECT THE
PRIVACY OF THE INDIVIDUALS WHO
PARTICIPATED.
THE NEXT REPORT AND SUBSEQUENT
ANNUAL REPORTS ONE POMPOUS A
FULL TWELVE MONTHS OF DATA.
FOR THE PARTIAL YEAR ENDING
DECEMBER THIRTY FIRST TWO
THOUSAND SIXTEEN.
ONE HUNDRED NINETY ONE
INDIVIDUALS RECEIVE
PRESCRIPTIONS UNDER EO WELL A.
ONE HUNDRED ELEVEN INDIVIDUALS
DIED FOLLOWING THEIR INGESTION
OF THE PRESCRIBED AID IN DYING
MEDICATIONS.
OTHER ONE HUNDRED ELEVEN
INDIVIDUALS EIGHTY SEVEN POINT
FOUR PERCENT WERE SIXTY YEARS OF
AGE OR OLDER.
NINETY SIX POINT FOUR PERCENT
HAD HEALTH INSURANCE.
AND EIGHTY THREE POINT EIGHT
PERCENT WERE RECEIVING HOSPICE
AND OR PAPER HE TOOK CARE.
S. THIS REPORT COVERS ONLY SIX
MONTHS OF DATA OUR
EPIDEMIOLOGISTS RECOMMEND
CAUTION.
BE EXERCISED IN DRAWING
CONCLUSIONS BASED UPON THE
NUMBERS REPORTED.
THE RATE FOR THOSE WHO DIED
FOLLOWING INGESTION OF EATEN
DYING DRUGS WHICH SIX POINT OH
SIX.
PRETEND THOUSAND TOTAL DOUBTS
BASED ON ONE HER EIGHTY THREE
THOUSAND TWO HUNDRED SIXTY FIVE
TO US IN CALIFORNIA.
FROM JUNE NINTH TWO THOUSAND
SIXTEEN TO DECEMBER THIRTY FIRST
TWO THOUSAND SIXTEEN.
SOME QUESTIONS HAVE EMERGED FOR
CURRENTLY SINCE PUBLICATION THE
FIRST REPORT.
AND MAY BE INFORMATIVE
WE NOW TURN TO THOSE QUESTIONS.
AND RESPONSES.
HOW WOULD INDIVIDUALS WHO GOT
PRESCRIPTIONS IN ONE YEAR?
BUT DID NOT AVAIL THEMSELVES OF
THE PRESCRIPTIONS AND THAT YEAR.
BE COUNTED.
THE EEL LA AND REPORT INCLUDES
DATA FROM FORM SUBMITTED TO CDP
H..
IN THE CALENDAR YEAR.
A QUALIFY PATIENTS FOR WHOM A
PATIENT'S REQUEST FOR AID IN
DYING DRUG FORMS WAS SUBMITTED
IN TWO THOUSAND SIXTEEN. WILL BE
COUNTED AMONG PATIENTS FOR WHOM
THAT FORM WAS SUBMITTED. AND TWO
THOUSAND SIXTEEN.
IF CD PICTURES NOT RECEIVE
EITHER THE ATTENDING PHYSICIANS
FOLLOW UP FORM.
OR A CALIFORNIA DEATH
CERTIFICATE.
FOR THE PATIENT FOR THE TWO
THOUSAND SEVENTEEN REPORT.
THAT PATIENT'S OUTCOME WILL BE
COUNTED AS UNDETERMINED.
AS SHE BE PH RECEIVES THE
ATTENDING POSITION SPOT FORM
HURRY CALIFORNIA DEATH
CERTIFICATE. IN SUBSEQUENT
YEARS.
THE PATIENTS THAT. WILL BE
REPORTED. AND THAT HERE'S
REPORT.
WHAT DOES THE TERM?
QUOTE UNDETERMINED OUTCOMES AND
QUOTE MEAN A FIGURE ONE OF THE
REPORT.
THE TERM UNDETERMINED OUTCOMES
DESCRIBES INDIVIDUALS WHO
RECEIVED A PRESCRIPTION FOR AID
IN DYING DRUGS.
AND SEE THE PAGE HAS RECEIVED
THE ATTENDING PHYSICIANS
TRACKLISTING APPLIANCE FORM.
BUT NOT BE ATTENDING PHYSICIANS
FOLLOWED FORM.
AND ARE A CALIFORNIA DEATH
CERTIFICATE.
WERE THE SOURCES THE CD PH USED
TO COME TO THESE NUMBERS.
THE DATA'S DERIVED FROM THE
INFORMATION PROVIDED BY THE
ATTENDING PHYSICIANS
TRACKLISTING APPLIANCE FORM.
CONSULTING POSITIONS COMPLIANCE
FORM.
ATTENDING PHYSICIANS FOLLOW UP
FORM.
AND CALIFORNIA DEATH
CERTIFICATES SUBMITTED TO CDP H.
PURSUANT TO THE LAW.
WHY IS THE CAUSE OF DEATH FOR
THESE INDIVIDUALS ON THEIR DEATH
CERTIFICATES LISTED ASSETS?
UNDERLYING TERMINAL ILLNESS.
RATHER THAN.
AID IN DYING PRESCRIPTION.
REPORTING THE UNDERLYING
TERMINAL DISEASE AS THE
UNDERLYING CAUSE OF DEATH ON
DEATH CERTIFICATES.
EFFECTUATE THE CALIFORNIA
LEGISLATURE'S INTENT.
REGARDING THE CONFIDENTIALITY OF
PATIENT'S PARTICIPATION IN THE
ACT.
COMPLIES WITH APPLICABLE LAW.
AND BEST INSURERS THE
RELIABILITY AND USEFULNESS OF
DATA. COLLECTED FROM THE DEATH
CERTIFICATE FOR STATE.
NATIONAL AND INTERNATIONAL
SURVEILLANCE PURPOSES.
WHEN WILL NEW DATA BE AVAILABLE.
DATA FROM JANUARY FIRST TWO
THOUSAND SEVENTEEN THIRTY SUMMER
THIRTY FIRST TWO THOUSAND
SEVENTEEN. WILL BE PUBLISHED IN
THE NEXT ANNUAL REPORT.
AROUND.
JUNE TWO THOUSAND EIGHTEEN.
THIS REPORT WILL HAVE A FULL
TWELVE MONTHS OF DATA.
WHAT TO SEE PHD WITH ALL THE
OTHER DATA?
THERE IS REPORTED ON THE FORMS.
THE FORMS USED TO COLLECT DATA
FOR THE END OF LIFE ACT ARE
DETAILED IN THE ACT.
S. WELL THE SPECIFIC REPORTING
REQUIREMENTS ARE DELINEATED IN
THE ACT. AND SECTION FOUR FOUR
THREE POINT ONE NINE.
THE FORMS WILL BE KEPT SECURELY
STORED FOR THREE YEARS FOR
FOLLOW SURVEILLANCE AND THEM
RECOMMENDATION OF LEGAL COUNSEL.
THE DAD IS RETAINED IN A SECURE
DATABASE.
ARE THERE ANY QUESTIONS.
WHAT DID YOU THINK YOU'RE NOT
CAPTURING?
I THINK DATA ON.
THE NUMBER PURCHASE THE NUMBER
OF POSITIONS THROUGHOUT THE
STATE.
POR PARTICIPATING IN THE ACT AND
MAY BE AVAILABLE TO PATIENTS.
WHO WISH TO PARTICIPATE?
IN THE ACT.
IN TERMS OF REPORT ABILITY WE OF
COURSE HAVE DATA ON THE
POSITIONS.
WHO PARTICIPATE
BUT THAT IS NOT CURRENTLY A
REPORTABLE ITEM?
IT IN ARE YOU FINDING THAT WHEN
YOU RECEIVE THE FORMS EVERYTHING
IS FILLED OUT.
TO BE ABLE TO USE ALL THE DATA.
WE WERE INSTRUCTED.
THAT OUR ROLE IS NOT S.
ENFORCEMENT.
THAT WE ACCEPT THE FORMS AS
THEIR SUBMITTED.
I WILL NOTE THAT ANECDOTALLY.
HAS COME TO ME THAT ALL FORMS
ARE NOT PERFECTLY COMPLIANT AS
ONE MIGHT EXPECT IN A HUMAN
WORLD.
HOWEVER WE HAVE NURSES JUST FIX
THAT WE'VE BEEN ENJOYING
TOGETHER.
ON THE DATA QUALITY IN THAT
REGARD.
THANK YOU.
QUESTIONS MAN MEMBERS.
A THANK YOU MUCH AND I A I WOULD
LIKE TO NOTE THAT WE HAVE BEEN
JOINED A IN ADDITION TO SENATOR
WILK.
DID THE OTHER PARTNER ON THIS
WAS SENATOR BILL MONNING WHO
GETS TO SIT UP HERE WITH US
BECAUSE HE'S STILL IN OFFICE
BOYD'S ALSO WANNA GIVE HIM A
TREMENDOUS AMOUNT OF THANKS AND
ALL OF. A BIGGER CHAMPION FOR
THIS BILL AND THERE WAS NOT SO
WE WANNA ACKNOWLEDGE YOU AND AND
OFF OUR FEET UP TO TO MAKE SOME
COMMENTS IF YOU'D LIKE.
THANK YOU MADAM CHAIR IT'S WANT
TO THANK YOU IN THE SELECT
COMMITTEE FOR CONVENING THIS.
ALL WHO ARE PARTICIPATING NOT
JUST TODAY. BUT WITH THE
IMPLEMENTATION OF THIS
IMPORTANT.
HUMAN RIGHT IN CALIFORNIA SO
THANK YOU MADAM CHAIR FOR YOUR
LEADERSHIP AND IT'S.
GOOD TO SEE. OUR OTHER.
COLLABORATOR SENATOR LOIS WOKE
WELCOME BACK.
A AND WE'VE ALSO BEEN DUG JOINED
BY ASSEMBLY MEMBER JACQUI IRWIN
WHO WAS ALSO. INSTRUMENTAL ON
THE PASSAGE OF THIS BILL.
OKAY WELL IF THERE ARE NO OTHER
QUESTIONS AT THIS TIME.
I THINK YOU.
AND NEXT UP WILL HAVE THE.
PROVIDER EXPERIENCE.
WE HAVE DONE A DOCTOR KATHERINE
FORREST FROM STANFORD AND DR
LYNETTE CEDAR QUEST FROM UC SAN
DIEGO.
WELCOME MANAGE EVERYTHING YOU SO
MUCH FOR CONVENING THIS
OPPORTUNITY TO SHARE OUR
EXPERIENCES.
IN THIS AFTER THE FIRST ARM
YEAR PLUS OF IMPLEMENTATION.
I'M HERE PARTLY IN HONOR OF MY
MOTHER.
WHO WAS THAT WOMAN OF THE YEAR
FOR MY COUNTY I GREW UP IN SANTA
BARBARA COUNTY IN THE YEAR TWO
THOUSAND AND TWO WOULD HAVE USED
THIS OPTION HAD BEEN? AVAILABLE
TO HER ALONG WITH OUR HONORABLE
JUDGE JOE LIGE R. WHO ALSO WOULD
HAVE USED IT HAD BEEN AVAILABLE
ON HIS WIDOW ASKS ME TO SPEAK ON
BEHALF. AND IT IS IN THAT SPIRIT
THAT I CAME FORWARD VERY
PUBLICLY VERY EARLY ON.
I'M I ALSO JUST WANT TO
ACKNOWLEDGE THAT WHILE I'VE
WORKED AT STANFORD I LIVE IN
SANTA CRUZ COUNTY AND VERY
GRATEFUL FOR THOSE MEMBERS OF
THE COMMITTEE HERE TODAY I HAVE
ALSO CHAMPION THIS PAL.
I'M BEEN AND IF A FAMILY
PHYSICIAN BOARD CERTIFIED FOR MY
FOURTH TIME I PRACTICE.
FROM BIRTH TO DEATH ARE IN MANY
DIFFERENT SETTINGS INCLUDING THE
COMMUNITY CLINICS THE SAFETY NET
CLINICS PRIVATE PRACTICE AND FOR
THE LAST TEN YEARS IN ACADEMIA
TO TRY AND. THAT CAN PEOPLE INTO
THE PRIMARY CARE FEELS.
THIS PARTICULAR TOPIC IS VERY
RELEVANT TO THOSE OF US THE
PRACTICE IN PRIMARY CARE BECAUSE
MOST OR MANY END OF LIFE ISSUES
ARE IN THE HANDS OF THOSE OF US
THAT LIVE. AND WORK IN OUR
COMMUNITIES ACROSS THE STATE.
.
WHEN I FIRST WHEN THE BILL WAS
FIRST OUT BEING PASSED BY
RECOGNIZED AT THAT ONE OF THE
CRITICAL ISSUES CHORUS GONNA BE
MENTOR SHIP THAT WHEN WE MOVE.
FROM SOMETHING THAT IS
ABSTRACTED OR IN ANOTHER STATE
TO DO BEING VERY PRACTICALLY
IMPLEMENTABLE IN OUR OWN. TIME
STATE THAT WE NEEDED TO DO
THINGS TO ENSURE THAT PEOPLE.
ARE THAT OUR PATIENTS RECEIVED
THE ABSOLUTE BEST CARE POSSIBLE
A AT THE END OF LIFE INCLUDING
THE OPTION OF MEDICAL AID IN
DYING. AND SO I'VE BEEN SPENDING
MY TIME IN THIS LAST.
I REALLY TWO YEARS NOW BEING
INVOLVED IN TRAINING SO AN EVENT
AS I PRESCRIBED MYSELF REALIZING
WHAT AM I MISSING HOW DO I NEED
TO BE ABLE TO HOLD THIS
INFORMATION AND. AND DELIVER
THIS INFORMATION TO PEOPLE WHO
NEED IT.
WHAT WE'VE DONE THROUGH A
CALIFORNIA COUNTY OF FAMILY
PHYSICIANS MULTIPLE?
WEBINARS ON IN PERSON
CONTINUING MEDICAL EDUCATION
TRAININGS.
I'VE PARTICIPATED DIDN'T PATIENT
AND THE PATIENT'S SIDE ON
COMMUNITY TV COMMUNITY RADIO ON
IN THE TOWN HALLS THAT WERE DONE
EARLY ON WITH SENATOR MONEY. AND
NOW WHAT WE'RE FINDING IS THAT
ONE OF THE LARGEST
THE SECOND LARGEST ISSUES IS
ACCESS TO CARE. SO WHILE PEOPLE
WHO BY NATURE OR BY OR BY.
SCIENCE OR BY SPIRIT DECIDED TO
COME FORWARD EARLY. TRYING TO
FIGURE OUT HOW TO BEST MENTOR
OTHERS IN THE COMMUNITY TO
PROVIDE THAT EXCELLENT CARE AND
BY EXCELLENT I MEAN SPECIFICALLY
WHAT MEDICATIONS WHAT DOSES WHAT
DO YOU SAY ON THAT HOW CAN YOU
HOLD SPACE FOR SOMEONE.
TO LIVE THE LIFE THEY WANT IN
THE TIME THAT THEY HAVE.
AND ALSO TO HOLD SPACE FOR
THEIR CONCERNS AND MAKE SURE
THAT WE CAN ADDRESS THE.
I CAN TELL YOU RIGHT RIGHT NOW I
HAVE THREE PEOPLE IN THE LAST
MONTH THAT I'VE HAD
CONSULTATIONS AS AN ATTENDING
PHYSICIAN. ARE AN ALMOST TWENTY
YEAR OLD WITH METASTATIC CANCER
I HAVE A FORTY SIX YEAR OLD
SINGLE MOTHER WHO'S BEEN
FIGHTING AND FIGHTING AND
FIGHTING AND.
.
CAME TO ME TO EXPLORE MEDICAL
AID IN DYING AND I'VE A SEVENTY
SEVEN YEAR OLD WHO CAN'T SPEAK
ANYMORE AFTER ALL THE SURGERIES
THROUGH HIS THE UPPER PART OF
HIS BODY. AND WE COMMUNITY
COMMITTEE COMPLETELY.
AND WRITING. AND I JUST WANTED
TO ACKNOWLEDGE THAT I TO HAVE NO
CLUE WHETHER NOT THESE PEOPLE
WILL CONTINUE BUT JUST KNOWING
THAT THE OPTION IS THERE AND
THAT THERE'S SOMEONE ON THE
OTHER END WITH SKILLS.
HAS AYE I CAN'T EVEN DESCRIBE
THE IMPORTANCE OF THAT
EXPERIENCE FOR THE FOR THE
HUMANS ON AND THEIR FAMILIES
THAT WE CARE FOR IN OUR OFFICE.
THREE OF THOSE OF THE THREE OF
THOSE TO WERE DENIED.
BY THEIR CURRENT PHYSICIANS FOR
THE MOST RECENT PISSED BECAUSE
PEOPLE ARE UNCOMFORTABLE AND
HESITANT NOT BECAUSE THEY'RE
OPPOSED
SO IT'S THAT ALONG WITH THE
ACCESS ISSUE HESITANCY IS THE
SECOND BIGGEST ISSUE THAT I SEE
AN IMPLEMENTATION.
ARE AND FOR THAT REASON I'M
CONTINUING MY OUT REACH TO DO
TRAININGS AT THE CALIFORNIA
ACADEMY OF FAMILY PHYSICIANS.
CLINICAL FOREMAN MONTEREY THIS
YEAR FOR THE FIRST TIME AND
MONEY. ASSEMBLY LIKE THAT.
I WOULD LIKE TO SESSIONS ARE
OPEN TO IT UP VERY OPEN.
VERY OPEN BUT IT'S NEW AND FOR
THAT REASON BEING ABLE TO.
FIND OUT WHO ELSE IS PRESCRIBING
WHAT DO THEY PRESCRIBE WHAT DO
YOU DO IF SOMETHING. IS LESS IT
ISN'T EXPECTED ETCETERA SO THOSE
ARE THE TWO BIG THINGS THAT I
SEE IS AS AS OUR ISSUES RIGHT
NOW. ACCESS FINDING SOMEONE WHO
WILL PRESCRIBE CAN PRESCRIBE
THAT HAS THE ABILITY TO FIND
RESOURCES TO HELP THEM DO SO
BRILLIANTLY AND.
COMPASSIONATELY AND THEN.
THE SECOND IS ACTUALLY THAT
VENUE WHO WHO ARE THOSE PEOPLE
HOW HOW DID WE DO THAT ACCESS
AND INFORMATION.
QUESTION.
THANK YOU MADAM CHAIR AND.
DOCTOR FOR BEING HERE TODAY BUT
MORE IMPORTANTLY HERE.
CONTRIBUTIONS TO THIS IMPORTANT
NATIONAL CONVERSATION.
AND THEN REALLY TAKING UP THE
FRONT LINES SEEN BOTH EDUCATION.
AND PRACTICE IN DIRECT PATIENT
CARE.
I WOULD LIKE TESTS FOLLOW UP ON
THE ACCESS ISSUE.
.
MY GUESS IS.
PEOPLE WHO KNOW OF YOUR WORK
DIRECT A LOT OF PROSPECTIVE
PATIENTS YOUR DIRECTION.
BUT.
WHAT IF THAT'S A PATIENT IN SAN
DIEGO COUNTY IMPERIAL COUNTY? DO
YOU HAVE ANY RESOURCES ARE AT
YOUR FINGERTIPS TO KNOW WHAT
OTHER PHYSICIANS AND OTHER PARTS
OF THE STATE.
MAY BE. A PROVIDING SUPPORT YOU
ASKED A GREAT QUESTION AND THE
SHORT ANSWER IS THAT THERE'S
NOTHING FORMAL NOW IT'S ALL BY
INFORMAL NETWORKS. WHICH MEANS
THAT PEOPLE WHO HAVE GOOD SKILLS
FOR ACCESSING NETWORKS ENGLISH
LANGUAGE FOR INSTANCE ARM HAVE
GOOD ACCESS AND THOSE THAT DON'T
MIGHT NOT.
IT THERE IS ONE OF THE OTHER
THINGS IS THAT BECAUSE OF THAT
STATE FUNDING VERSUS THE FEDERAL
FUNDING ISSUE PEOPLE THAT ARE IN
FEDERALLY FUNDED CENTERS ARE.
HAVING TO MAKE DECISIONS ABOUT
HOW TO PROCEED AND IT'S NOT IN
NOT DIFFERENT OTHER THINGS WHERE
THERE'S FEDERAL BANDS.
BUT IN THIS PARTICULAR CASE IT
IT'S CHALLENGING AND I KNOW OF
I'VE GOT TO SPEAK TO NOW FOR
DIFFERENT COUNTIES ARE HEALTH
SYSTEMS ABOUT WHAT THEY MIGHT DO
HOPE THEY CAN NAVIGATE THAT BUT
IT IS AN ISSUE. WHICH IS IF YOU
DON'T HAVE MEANS IF YOU DON'T
HAVE LANGUAGE HOW CAN YOU
ACCESS.
IN THE END EQUITABLE WAY PEOPLE
ARE ALWAYS WORRIED THE OTHER WAY
ABOUT.
VULNERABLE POPULATIONS I
ACTUALLY THINK.
THE WAY THAT WE'VE RULED OUT
WITH WITH THUMB WITHOUT THE
SUPPORT FOR THE MEDICAL
COMMUNITY AND WITH THIS.
GIVE THEM AROUND FUNDING.
THAT WE PERHAPS ARE SERVING
THAT PRIVILEGED IN OUR STATE
BETTER NOW THAN THEN AT A MORE
EQUITABLE DISTRIBUTION WON'T
THANK YOU FOR THAT I THINK.
BECAUSE IT IS IN ITS EARLY
STAGES OF IMPLEMENTATION.
THE THINGS WE LEARN NOW CAN HELP
US.
MOVE FORWARD IN MAYBE NOT
NECESSARILY LEGISLATIVELY BUT
MAYBE THROUGH EXISTING NETWORKS
OF POSITION ASSOCIATIONS.
PROVIDER CESSATIONS
PHARMACEUTICAL ASSOCIATIONS ARM.
WORKING WITH EACH OTHER TO
PROVIDE THE KIND OF THE INFORMAL
INFORMATION SHARING.
.
BUT INFORMALITY ONLY GET YOU SO
FAR AND AS YOU POINT OUT CERTAIN
DISADVANTAGED COMMUNITIES SHOULD
HAVE SIMILAR ACCESS.
NUMBER THE OTHER ISSUE I KNOW
AND YOU DIDN'T DWELL ON IT THIS
MORNING BUT I'VE HEARD YOU AT
OTHER FORUMS.
.
MAKE VERY CLEAR THAT THE
CONTINUUM OF END OF LIFE CARE.
AID IN DYING IS ONE OPTION.
AMONG MANY AND THAT OF THE
BROADER MEDICAL GOAL. IS MAKING
SURE PATIENTS.
HAVE ACCESS
TO OWN A HOME FORMS OF CARE.
PAIN MANAGEMENT PALETTE IF CARE.
HOSPICE CARE AND AID IN DYING IF
THAT PROVES TO BE THE
APPROPRIATE. MEASURES SANTA
ACCURATE STATEMENT ABSOLUTELY I
MEAN THE DATA AT THE HOLDS OUT
THAT.
IN THE CONTEXT OF SPEAKING OF
ALL OF COVERAGE OF THE OPTIONS
AT THE END OF LIFE ONE OF THE
THINGS THAT THE LEGISLATION HAS
ALLOWED US TO DO IS TO SAY YES
THIS IS AVAILABLE AND THEN HERE
ARE ALL OF THE THINGS THAT WE
CAN DO. AND WE FIND THAT IN THAT
IT THAT IT DOES MAKE IT HELPS ON
THE FRONT LINES FOR PEOPLE TO BE
MORE FUN ARTICULATE ABOUT WHAT
THE OPTIONS ARE IN FOR PATIENTS
TO DESCRIBE THEIR CONCERNS. THE
DATA OF HOW MANY ARE IN HOSPICE
CARE RELATIVE TO THOSE THAT ARE
IN HOSPICE CARE ACROSS THE STATE
JUST FOR TERMINAL ILLNESS IN THE
LAST SIX MONTHS IS.
IS EVIDENCE ENOUGH OF THAT THAT
ALLOWS US TO SPEAK ABOUT
PALLIATIVE MEDICINE OF HOSPICE
CARE.
ETCETERA IN A MORE IN A MORE
MUCH MORE ACCESSIBLE WAY IT
CERTAINLY IS MY PERSONAL
EXPERIENCE I HAD SOMEONE IN IN
NAM NOVEMBER WHO CAME FORWARD.
FEELING QUITE DESPERATE ACTUALLY
UNABLE TO ACCESS CARE CAME
INTOMY OFFICE AND NO BECAUSE.
THEY
HAD GONE INTO OFFICE TO ASK
ABOUT END OF LIFE CARE THE
CURTAIN CAME DOWN AND THEY
COULDN'T HAVE THIS MORE ROBUST
CONVERSATION ABOUT. WHAT DO YOU
HOW CAN WE BEST SUPPORT YOU AND
YOUR FAMILY AT THIS PART OF YOUR
LIFE THEY FOUND HOSPICE IT WAS
ABSOLUTELY PERFECT ABSOLUTELY
RIGHT IN THE HEAD EXACTLY?
THAT AND MONTHS THAT THEY HOPED
SO I I I I I THINK IT'S.
.
REALLY BIRTH HARPING ON ACTUALLY
THAT IT'S JUST ONE OPTION AND
IT'S VASTLY APPROPRIATE FOR SOME
AND NOT OTHERS I SOMETIMES LIKEN
IT TO BIRTH WHERE PEOPLE ARE
VERY JUDGMENTAL ABOUT WHAT A
GOOD BIRTH IS WHETHER OR NOT YOU
SHOULD HAVE AN EPIDURAL WHETHER
OR NOT YOU SHOULD. BE IN A
HOSPITAL OR ALL OF THE DIFFERENT
WAYS THAT PEOPLE ARE HAVE
JUDGMENT ABOUT IT BUT AT THE END
OF THE DAY.
WE DON'T CHANGE PEOPLE IN THIS
CRITICAL NINE MONTH PERIOD JUST
LIKE IN THE END OF LIFE WE
DON'T.
CHANGE IT FOR PEOPLE PLAN YOU
KNOW THINKING ABOUT THAT THEIR
OWN THEIR OWN AND FOR LIFE. AND
THAT WITHOUT JUDGMENT AND JUST
TALKING ABOUT OPTIONS PEOPLE
FEEL EMPOWERED. CALMER UNSAFE
FOR AND THEY'RE GOOD
CONVERSATION THINKING THEN MADAM
CHAIR OF A FINAL QUESTION IF I
MIGHT.
.
IN THEM IN ADVANCE I'M HAVE TO
LEAVE TO CAST A VOTE IN A.
COMEDIAN I WILL BE BACK BUT MY.
THE FINAL QUESTION THIS POINT.
IN TERMS OF THE TRAINING ON
MEDICAL SCHOOL CURRICULUM.
MEDICAL ASSOCIATIONS CONTINUING
EDUCATION HAVE YOU SEEN ANY
INCORPORATION. OF TRAINING ON. A
AID IN DYING IN. IN THESE FACETS
OF A CONTINUING EDUCATION FOR
PHYSICIANS OR MEDICAL STUDENTS
AND TRAINING.
THIS IS.
AT AREA THAT'S RIGHT FOR
DEVELOPMENT SO FOR INSTANCE AT
THE RESIDENTS SEE THAT.
OR THE MEDICAL SCHOOL WHERE I
AM THERE IS NO FORMAL TRAINING
AT ALL CURRENTLY WE KEEP TALKING
ABOUT IT WHEN PEOPLE COME TO MY
OFFICE INDIVIDUALLY OFFER
CLINICAL ROTATIONS THEY WILL BUT
THERE'S NOT. NOTHING INTEGRATED
INTO THE MEDICAL SCHOOL
CURRICULUM A SAME THING FOR THE
RESIDENCY SO I'VE GONE AND
SPOKEN TO THE RESIDENTS IN
SEVERAL FAMILY MEDICINE
RESIDENCIES BUT THERE'S NOT NO
FORMAL CURRICULUM.
YET BUT I IMAGINE WE ARE AND
WILL BE WORKING ON THAT TIP TO
IN ORDER FOR PEOPLE TO HAVE.
MORE CAPACITY.
MR DON'T.
THANK YOU THEY CONDUCT FOR
SIZING AFFAIRS AND VERY NICE TO
SEE YOU HERE TODAY AND I
APPRECIATE. THE WORK THAT YOU'RE
DOING TO EDUCATE AND JUST FROM A
COMMENT I THINK THIS CD PH
REPORT SHOWS.
THAT YOU ARE CORRECT ABOUT WHO
THIS IS REALLY REACHING.
AND IN OUR AREA COUPLE DIFFERENT
PHYSICIAN GROUPS OR HANDLING IT
DIFFERENTLY AND ONE.
WHO EMBRACE DEAD WHEN THINGS I
THINK THAT WAS REALLY HELPFUL
FOR PHYSICIANS ASSOCIATED WITH
THAT MEDICAL GROUP WORD THAT THE
FORMS THE POLICIES PROCEDURES
THAT THEY PUT IN PLACE?
BECAUSE THEY WERE LEADING
PHYSICIANS KNOW AND AS I
UNDERSTAND IT NOT ALL PHYSICIANS
IN THAT MEDICAL GROUP ARE
WILLING TO BE ATTENDING
PHYSICIANS OR SOMETHING PATIENTS
BUT. BUT STILL THERE IS A
PROCESS BUILT INTO THAT
ORGANIZATION.
WHICH LEADS LENDS SOME COMFORT
OR SOME.
BACKING TO A PHYSICIAN WHO IS
INTERESTED IN HAVING A
CONVERSATION ABOUT IT MOTHER
PHYSICIANS GROUPS.
NOT SO INTERESTED IN NOT SENDING
A SIMILAR MESSAGE DOWN TO THERE.
THE TO THEIR PHYSICIANS AND SO
FOR THOSE NOT ASSOCIATED WITH
PHYSICIANS GROUPS FOR THOSE WHO
ARE DEALING WITH UNDERSERVED
COMMUNITIES.
FINDING WAYS TO GET PROCESSES
PROCEDURES EDUCATION OUTTA ABOUT
WHAT THIS REALLY REPRESENTS WHAT
THE OPTIONS ARE WHO THE
PHYSICIANS ARE WHO ARE
KNOWLEDGEABLE ENOUGH ABOUT
EIGHT.
WILLING TO HAVE CONVERSATIONS IS
IS GOING TO BE IMPORTANT.
THIS WILL BE A LONG TERM PROCESS
GETTING EVERYBODY UP TO SPEED
AND AND TRULY UNDERSTANDING WHAT
THIS OPTION.
REPRESENTS.
BUT THE.
FINDING WAYS TO TO INTEGRATED TO
THE MEDICAL SCHOOLS AS SENATOR
POINTS OUT WORK IN THAT THE
PHYSICIANS GROUPS AND EVEN JUST
HAVING FORMS OR SOMEPLACE TO GO.
WHAT POSITION IS ASKED ABOUT IT?
SO THAT THEY CAN GET THEIR
QUESTIONS ANSWERED IS ULTIMATELY
REALLY VERY IMPORTANCE OF
BECOMES A NORMAL PART. OF THAT
INTERACTION BETWEEN TO PAY SAID
IN A POSITION. IF THE PATIENT
NEVER AVAIL THEMSELVES OF THAT
THEY AT LEAST HAVE THE SOUP
VERY APPROPRIATELY POINT OUT THE
COMFORT OF BEING ABLE TO HOUSE.
AND SEE WHAT OPTIONS THERE ARE.
SO THAT THEY FEEL THAT THEY HAVE
A LITTLE BIT MORE CONTROL OVER A
VERY SIGNIFICANT PART OF THEIR
LIFE THAT'S THE PROCESS OF.
OF DYING IN AND.
HOW THEY GET TO DO THAT WITH
DIGNITY AND? AND ALONG WITH THE
HELP OF THEIR PHYSICIAN TO
APPRECIATE WHAT YOU'RE WHAT
YOU'RE DOING AND IF WE CAN
FIGURE OUT HOW TO GET.
MORE ASSOCIATIONS
PHYSICIANS GROUPS AND OTHERS
INTERESTED AND AT LEAST.
HAVING THOSE OPTIONS AND THAT
EDUCATION AVAILABLE THAT I THINK
WE TAKE A LOT OF THE STIGMA AND
FEAR. OUT OF WHAT THIS OPTION
REPRESENTS.
THANK YOU.
CAN I RESPOND BRIEFLY I AGREE
ONE HUNDRED PERCENT AND I'M
NOTICING IN MY OWN TRAINING THAT
INITIALLY PEOPLE WANTED TO KNOW
WHAT THE LAW WAS.
AND NOW PEOPLE WANT TO KNOW HOW.
WHAT TO DO HOWL TO ENACT THE LAW
HOW TO HAVE THE CONGRESS WATER
CREEK HAVE A CRUCIAL
CONVERSATION WORDS THAT WORK
MEDICATIONS WHAT HAPPENS IF
THERE'S COMPLEMENT? OUT
COMPLICATIONS SO WE'VE ACTUALLY
GROWN AND DEVELOPED AND THAT'S
ANOTHER AREA SO THERE'S THE VERY
FRONT LINE OF WHAT IS THIS
ANYWAY AND THEN THERE'S THE
SECONDARY WHICH IS HOW IS THIS
ANYWAY. THAT THANK YOU FOR THAT
COMMENT.
IT'S BEEN MY EXPERIENCE TO IT IN
IN A SPOKE WITH A COUPLE WHEN
WHEN SYSTEMS ACTUALLY ARE
INTENTIONAL ABOUT DEVELOPING
PROTOCOLS AND.
TRAINING FOR PHYSICIANS I THINK
IT'S JUST A BIT.
WHO DID MUCH BETTER?
I WANT TO ASK IN A NO GOOD
MISTER LEVINE. WHAT ABOUT THE
ROLE OF INTERDISCIPLINARY TEAMS
I KNOW SOMETIMES IT'S A CARGO
FOR THE POSITION INITIALLY TO
HAVE THOSE CONVERSATIONS BUT HOW
ARE YOU SEEING? THE THE BUT THE
INTERFACE BETWEEN
INTERDISCIPLINARY TEAMS IN BEING
IN LOVE IMPLEMENT FACILITATORS
YEAH I I THINK THAT IT'S CRUCIAL
AND THAT'S WHERE WE'RE HEADED IN
THE MEDICINE IN GENERAL WHICH IS
A TO HAVE PATIENT. OUGHT PATIENT
ORIENTED TEAM BASED CARE.
IN OUR PARTICULAR INSTITUTION I
WORKED VERY CLOSELY WITH THE
SOCIAL WORKER OF WHO'S EMBEDDED
IN MY OFFICE.
AND.
WE'VE I'VE HAD CONVERSATIONS
MIGHT BY A MEDICAL ASSISTANT AND
MY OF THE NURSE WHO IS IN OUR
OFFICE ALSO PARTICIPATES WE ALSO
REFER FOR CONSCRIPTS ATTENTION
TO PALLIATIVE CARE WHICH IS A
SHORTAGE IN OUR COMMUNITY AND I
REALIZE THE LUXURY OF THAT IT'S
ACTUALLY BUILT INTO STANFORD'S
PROCESS. BUT IT OFFER OFF SO
OFFERS THAT CAPACITY OF ALSO
PATIENT ADVOCACY WE'VE SEEN VERY
EFFECTIVE IN THE GROUP HEALTH
MODELS KAISER MODEL I KNOW OTHER
PEOPLE BE SPEAKING TO THAT. BUT
I AGREE WITH YOU A HUNDRED
PERCENT IS THAT HAVING THAT.
TAKING CARE OF SOMEONE IN THE.
END ALSO HOSPICE WORKERS.
IT'S ALSO REALLY IMPORTANT TO
HAVE THOSE COMMUNICATION POUTS
OPEN.
I THE OPPORTUNITY TO WORK VERY
CLOSELY WITH HOSPICE IN ONE OF
THE CASES WHERE ARM IT WAS THEIR
FIRST CASE AND AND IT WAS REALLY
EYE OPENING TO ME HOW LITTLE
PREPARATION THAT GROUP HAD HAD.
SO IT IS JUST A REMINDER TO THAT
IT'S ONE THING TO THINK ABOUT IT
ABSTRACTLY IT'S ANOTHER WHEN THE
HUMANS THAT YOU KNOW AND CARE
ABOUT ARE IN FRONT OF YOU ASKING
COMPLEX.
AMONG ABOUT THE TEAM TO HER.
A MISTER IRVING.
THANK YOU MADAM CHAIR THANK YOU
FOR YOUR TESTIMONY.
DIAZ I ENDED UP WITH A AT A
PERSONAL EXPERIENCE WITH THE.
FACT
OF MY WIFE'S GREAT AUNTS I
RECEIVED A TERMINAL DIAGNOSIS
AND.
AVAILED HERSELF OF IT.
AND.
THE THE PROCESS FOR HER WAS A
VERY SIMPLE ONE. SHE WAS ABLE TO
TIM I NAVIGATE THAT.
AT IT TIE IT BROUGHT I THINK A
GREAT DEAL OF PEACE AND COMFORT
HER WHOLE FAMILY THAT SHE WAS
ABLE TO MAKE THIS DECISION ON
HER OWN ULTIMATELY. SHE PASSED
AWAY A COUPLE OF DAYS BEFORE SHE
HAD SET HER DATE.
TO OUT TO DO IT.
.
AND I THINK AMAZINGLY AND MAYBE
BECAUSE I AS A LAWMAKER WHO
VOTED ON IT I HAD MUCH%
GREATER ANXIETY AS THE DATE
APPROACHED.
THEN HER DAUGHTER DEAD OR MY
MOTHER AND MY DAD AND I AND DOT
WHO WERE REALLY AT PEACE WITH
THAT THERE OF MOTHER AND AUNT
ABOUT THE DECISION.
THAT THEY WERE MAKING FOR ABOUT
FOR COMFORT FOR DIGNITY.
AND ON AND SO FROM THAT
VIEWPOINT IT IT REALLY WORKED A
NUMBER OF WAYS.
TO. TO TO HELP.
.
EVEN THOUGH IT SHE SHE WAS
ACTUALLY ABLE TO TO TO USE IT.
ON.
THE DATA SHOW US.
.
SUN SOME NUMBERS THAT I DON'T
KNOW IF I WOULD SAY THAT THEIR
SURPRISING NUMBERS I DON'T KNOW
IF I HAD.
EXPECTATIONS ABOUT.
HOW MANY PEOPLE WOULD BE USING
IT ON AN ANNUAL BASIS
OR HOW MANY DOCTORS WOULD BE
PARTICIPATING? OR WHAT THE SOCIO
ECONOMIC MAKEUP OF SOMEONE WOULD
BE.
I. KNOW I THINK OUR HOPE WAS IS
THAT IT WOULD PROVIDE.
AN OPTION FOR EVERYBODY CAN
NEEDS IT.
AND.
I AND I THINK THAT THERE ARE.
I I AGAIN I DON'T RECALL THEM
SHORTCOMINGS BUT SOME GAPS IN
HOW CALIFORNIANS ARE USING IT.
.
BUT THE SOCIOECONOMIC WAY
DEMOGRAPHICALLY.
AND.
ONE OF THE NUMBERS AT AGAIN
THAT DIDN'T JUMP AT ME BUT ONE
THAT I NOTICE WAS THE.
ALONG WITH THE NUMBER OF
PATIENTS.
THE NUMBER OF PHYSICIANS WHO
PARTICIPATED.
AND I THINK THAT IN THE RUN UP
TO. THE VOTE ON THE BILL.
NO THERE ARE A LOT OF OF MYTHS
AND CLAIMS ABOUT YOU KNOW.
HOW THIS WOULD BE USED THAT I
DON'T THINK WERE REALIZED ON IN
A POSITIVE WAY?
THAT.
THERE WASN'T.
IT DOES NOT APPEAR TO ME IN
NUMBERS THAT.
THERE IS THERE SOMETHING THAT'S
NOT WORKING.
IN A IN A NEFARIOUS WAY IS WHAT
I MEAN AND AND THAT DON.
ANY OF THE CONCERNS ABOUT.
CERTAIN DOCTORS BEING THE
DOCTORS THAT PEOPLE WOULD GO TO
FOR THIS.
ON IT SEEMED THE NUMBER OF
DOCTORS AT PARTICIPATING AS JUST
ONLY A BIT LESS THAN THE NUMBER
OF PEOPLE AVAILING THEMSELVES OF
THE OPTION.
SO TO ME IT MEANS THAT.
THERE ARE THAT.
THEY'RE NOT BEING FUNNELED TO
ONE OR TWO DOCTORS MANY
PHYSICIANS ARE ABLE TO HELP
THEIR PATIENTS.
THAT DAY THAT THERE WHILE THERE
MAY BE SOME BARRIERS TO HELPING
ALL PATIENTS THAT IT'S NOT
LIMITED TO JUST A CERTAIN NUMBER
OF DOCTORS WHO ARE ABLE TO
NAVIGATE AT WAR ARE PUSHING.
THEIR PATIENCE TOWARD THIS
OPTION IT DOESN'T SEEM LIKE ANY
OF THESE POSITIONS ARE. YOU KNOW
ADVISING MORE THAN JUST A
HANDFUL IF THAT GIVEN.
THE SMALL NUMBER ABOVE THE TOTAL
NUMBER OF PATIENTS
AT OR BELOW THE TOTAL NUMBER
PATIENTS OF PHYSICIANS.
AND.
AND SO JUST LOOKING AT THE DATA.
AND THAT ANECDOTAL EXPERIENCES
THAT I'VE HAD I'D LOVE TO HEAR
YOU REFLECT A LITTLE BIT ON
THAT.
.
BUT SIDE BUT IT IT LOOKS LOOKS
GOOD SO FAR TO ME ON ON WHAT
SOME OF THOSE CONCERNS THAT WERE
RAISED.
I AM GLAD TO HEAR THAT YOU'RE
KEEPING AN EYE ON THAT AS WELL
SO THANK YOU FOR YOUR THEORY
YOUR THOUGHTFULNESS THAT YOU'RE
LOOKING AT AT THE RANGE OF
PHYSICIANS. ON AYE ANECDOTALLY
AGAIN.
IN MY OWN INSTITUTION INITIALLY
THERE WERE ONLY TWO OF US THAT
CAME OVER AT. UP FORWARD AT A
FIFTEEN HUNDRED PHYSICIANS.
AND WHEN WE DID THAT THAT
TRAINING FOR AT.
THOSE OF US THAT WERE WILLING
SAID THAT WE WOULD BE WILLING TO
HELP OTHERS THROUGH AND BY THIS
I MEAN. I'M.
CONTACTING THE OREGON AND
WASHINGTON PHYSICIANS PUTTING
TECH TALKING ACROSS THE STATE
WITH MY COLLEAGUES AND THEN
PROVIDING MENTORING FOR THOSE
MORE CLOSE AND WE HAVE OVER A
DOZEN NOW THAT I'VE PRESCRIBED
AT MY INSTITUTION. AND MANY MORE
THAT THAN THE HALF THAT HAVE THE
HOW THE CONVERSATION.
AGAIN THE DATA DOESN'T COLLECT
THE THE CONVERSATION AND THAT IS
HAPPENING ACROSS THE STATE
THERE'S NO WAY TO GRAB IT IT'S
IN THE PRIVACY OF OUR OFFICES
WHERE IT BELONGS.
AND.
WE OWN YOU'LL ONLY FIND OUT
ABOUT IT NOT ONLY AFTER THE
FIRST COUPLE OF PRE LA ME THE
FORMS AT CENTER BUT ACTUALLY
PRESCRIPTION AND MANY LIKE IN
YOUR CASE OF YOUR GREAT AT SOUTH
LIKE YOUR FAMILY DID A LOVELY
JOB OF SUPPORTING. HER IN HER
OWN CHOICE WITH.
WITHIN THE LAW UP MOST MANY
PEOPLE ACTUALLY PASSED AWAY
BEFORE WORD IN A DIFFERENT KIND
OF WAY AND WE HAVE NONE OF. IT
IS NO WAY TO CAPTURE THAT DATA
BUT ANECDOTALLY I WOULD SAY THAT
IT'S WHEN SOMEBODY THAT YOU KNOW
AND CARE ABOUT COMES TO YOU AND
ASKS YOU ABOUT IT. THAT SUDDENLY
YOUR WILLINGNESS AND ABILITY TO
GRASP IT GET INFORMATION AND
PROVIDE EXCELLENT CARE COMES
FORWARD AND THAT'S NOT DIFFERENT
THAN OTHER THINGS THAT WE DO IN
MEDICINE. WE ARE ALWAYS THE BEST
EXPERTS ON OUR LAST CASE.
WHICH IS AS IT SHOULD BE WE
SHOULD ALL BE GEEKY AND CURIOUS
OUR WHOLE CAREERS.
BUT THAT'S MY THOUGHT ABOUT IT.
I THINK YOU AND I WELCOME ALSO
SAID DR CEDAR CREST THANK YOU
FOR THANK YOU FOR JOINING US
SO. OF I WANT TO THANK YOU FOR
ALLOWING ME THE OPPORTUNITY TO
COME SHARE MY EXPERIENCES WITH
THIS ISSUE.
I'VE BEEN IN PRACTICES A
POSITION FOR ABOUT TWENTY SEVEN
YEARS NOW CAN. MUCH OF MY
BACKGROUND WAS A WORKING IN
HOSPICE AND PALLIATIVE MEDICINE
SO I HAVE BEEN WITNESS TO MANY
DOUBTS IN MANY DIFFERENT WAYS IN
THE COURSE OF MY CAREER.
WHEN AID IN DYING WAS
INTRODUCED AS AN ALLOWABLE
PRACTICE IN CALIFORNIA.
I DID THIS IS A NATURAL
EXTENSION OF THE CARE THAT WE
ARE A PROVIDE AT THE END OF
LIFE.
DEATH HAS ALWAYS BEEN A
PROFOUND. AT TIMES MESSY HEART
WRENCHING PART OF THE HUMAN
EXPERIENCE.
AID IN DYING DOES NOT ELIMINATE
THAT.
THE PATIENTS I'VE CARED FOR OVER
THE PAST ONE AND A HALF YEARS
SINCE THIS HAS BEEN ALLOWED.
WHO HAVE COME TO ME SEEKING AID
IN DYING? HAVE TAUGHT ME A LOT
ABOUT FACING ONE'S OWN DEATH.
THEY'RE PEOPLE WHO OF A FIRM
GRASP ON THE REALITY THAT THEIR
LIVES ARE. A COMING TO AN END.
THEY TELL ME THAT THEY ARE
GRATEFUL FOR THEIR LIFE.
AND THEY DON'T FEAR DEATH.
BUT WHAT THEY DO FEAR IS.
EXTENDED UNNECESSARY SUFFERING.
BEFORE THEY DIE.
OF COURSE WE ALWAYS DO OUR BEST
TO ALLEVIATE THEIR SUCH
SUFFERING AND IN THE MAJORITY OF
CASES WERE ABLE TO DO THAT
SUCCESSFULLY WITH GOOD SUPPORT
OF HOSPICE PALLIATIVE CARE.
BUT DESPITE OUR BEST EFFORTS.
THERE ARE ALWAYS SOME CASES
THAT WE CANNOT ACCOMPLISH THAT.
THIS IS WHY I'VE ALWAYS BELIEVED
THAT AID IN DYING.
SHOULD BE A LAST RESORT BUT IT
SHOULD BE AVAILABLE.
THE POSITIVE ASPECT FOR ME.
I HAS BEEN.
MY EXPERIENCE THUS FAR.
WITH THE PATIENTS WHO I OF
PRESCRIBED IN DYING FOR.
.
THEY HAVE YOU KNOW FORMALLY
EXPERIENCE VERY PEACEFUL DOUBTS
AT HOME WITH THEIR FAMILY UP
THEIR SIDE.
AND THEY'VE BEEN.
VERY GRATEFUL FOR THIS.
ABILITY TO TO DO SO.
THIS TO ME IS A STARK CONTRAST
FROM THE DEATHS THAT I SEE IN
OUR ICE USE ON A DAILY BASIS.
WHERE DEL FOOD BECOMES MEDICAL
EYES DE PERSONALIZED INVASIVE
AND SOMETIMES VIOLENT?
FOR SOME REASON NOBODY SEEMS TO
QUESTION ABOUT PRACTICE.
I'M MUCH MORE AT PEACE WITH THE
FORMER SCENARIO THAN I AM WITH
THE LATTER.
THE CHALLENGES.
THE MOST SURPRISING ASPECT FOR
ME.
IN THESE CASES THAT I DID NOT
ANTICIPATE. WAS THE SENSE OF
URGENCY THAT PATIENTS HAVE ONCE
THEY MAKE THIS DECISION.
FOR THEM EVEN AT TWO TO THREE
DELAY IN THE PROCESS SOMETIMES
SEEMS TO BE EXCRUCIATING. ON
THIS WAS NOT SOMETHING THAT I
PERSONALLY ANTICIPATED SEEN.
GIVEN THE MULTIPLE STEPS THAT
ARE REQUIRED IN THE PROCESS.
THERE ARE GONNA BE INEVITABLE
DELAYS THIS IS.
IN ALMOST NO CASE IS FIFTEEN
DAY PROCESS.
I DID IN IN EUROPE THEM JUST
MEAN YOUR MEDICAL OPINION IS IS
THE REQUIREMENTS WE LAID OUT TO
OWNERS.
I THINK THE CHALLENGE IS
BALANCING SAFETY VERSES.
HURDLES.
AND WHICH WHICH IS WHAT THAT
WHICH IS WHAT WE'RE TRYING TO DO
RIGHT IN THE EMPLOYMENT TATIAN.
RIGHT.
.
AND I I THINK IT'S KIND OF.
ON ON THE EDGE BETWEEN THOSE
TWO ON THAT BALANCE.
.
IN YOU KNOW IN MOST CASES IF IF
THE PATIENT AS WELL ENOUGH TO TO
MAKE THE VISITS I DON'T THINK
IT'S BURDENSOME I THINK IF THEY
DON'T START THE PROCESS UNTIL
THEY'RE VERY FRAIL AND IT'S VERY
DIFFICULT TO THEM. FOR THEM TO
MAKE THE MANDATED THREE OF FOUR
VISITS IT BECOMES. VERY
BURDENSOME.
AND THAT'S THE CHALLENGE IS HOW
HOW TO BALANCE THOSE.
THE OTHER CHALLENGE THAT WE'VE
ENCOUNTERED.
IS THAT.
.
SOME OF THE DELAYS THAT OCCUR
ONE IS IF THAT PATIENT
APPROACHES THE PHYSICIAN OR
PHYSICIANS WHO HAVE BEEN CARING
FOR THEM AND THOSE FIRST
PARTICULAR PHYSICIANS ARE OPTING
OUT.
THEN THERE'S A DELAY OF
REDIRECTING THEM TO ANOTHER
PHYSICIAN WHO'S WILLING TO
PARTICIPATE IN AID IN DYING.
WORRIED.
MOST CASES HAVE BEEN ABLE TO DO
THAT SUCCESSFULLY BUT THAT TAKES
A LONG TIME.
IF THE PATIENT HAS ALREADY
ENROLLED IN HOSPICE SERVICE AND
THEN REQUESTS AID IN DYING AND
THEY NO LONGER HAVE ACCESS BACK
TO THEIR TREATING PREVIOUS
TREATING PHYSICIANS. AND THEY
HOSPICES NOT PARTICIPATING.
THAT BECOMES VERY DIFFICULT TO
NAVIGATE BECAUSE NOW THEY HAVE
TO OFTENTIMES PAY OUT OF POCKET
TO GO BACK TO THE PREVIOUS
POSITIONS PAY FOR THE THREE OR
FOUR VISITS.
MAKE THOSE APPOINTMENTS.
AND THAT BECOMES OFTENTIMES A
BUT A BIG HURDLE.
.
AND AS I SAID THE TO THE
PATIENTS ONCE ONCE THEY'RE VERY
FRAIL AND IT DIFFICULT TO TO
TRANSPORT IT BECOMES VERY HARD.
.
FOR ME THE MOST DIFFICULT CASES
I'VE ENCOUNTERED HAVE ACTUALLY
BEEN THE PATIENTS WHO WANT AID
IN DYING AND FOR VARIOUS REASONS
DON'T QUALIFY. MOST OFTEN
BECAUSE THEY'RE GIVEN AN
EXTENDED PROGNOSIS.
FOR THEM THE FACT THAT AID IN
DYING IS AVAILABLE BUT THEY
DON'T QUALIFY. SEEMS TO ACTUALLY
WORSEN THEIR SUFFERING.
.
AS ONE PATIENT COMMENTED TO ME
IN THIS ODD KIND OF SITUATION
THEY SAID. IT SAYS OF MIND MY
SUFFERING DOESN'T MATTER.
AND THAT'S BEEN.
PAINFUL TO WITNESS.
THAT ONE GROUP OF PATIENTS OF
FALLS INTO THIS CATEGORY MORE
OFTEN THAN NOT IS THE A LS
PATIENTS.
WHEN THEY'RE AT A POINT WHERE
THEY CAN STILL.
PHYSICALLY SELF ADMINISTER
OFTENTIMES THEY DON'T YET HAVE A
LESS THAN SIX MONTHS PROGNOSIS
SO THEY'RE TRAPPED AND AND THOSE
THIS REALLY CREATE SOME
SUFFERING.
.
AND SO SADLY I THINK BECAUSE THE
OF THE. INORDINATE DIFFICULTY
IN.
OUR ABILITY TO ACCURATELY
PROGNOSTICATOR AS A NAY AS IN
ANY OTHER FORM OF TRYING TO
PREDICT THE FUTURE.
DIDN'T SOME OF THOSE PATIENTS
WHO WANTED AID IN DYING WERE
TOLD THEY HAVE A GREATER THAN
SIX MONTHS PROGNOSIS OF THEY
DIDN'T. A QUALIFIED.
ACTUALLY ENDED UP DYING WITHIN A
FEW MONTHS. OTHER PATIENTS WHO
WE'VE DEEMED QUALIFYING GOT THE
PRESCRIPTION SOME OF THEM LIVED
FAR BEYOND THE SIX MONTHS WE HAD
ONE PATIENT THAT GOT THE
PRESCRIPTION OVER A YEAR LATER
TOOK IT. SO I THINK GET WE HAVE
WE HAVE A CHALLENGE SORTING OUT
THE RIGHT PEOPLE WITHOUT WITHOUT
LIMITATION.
AND WE DON'T ALWAYS GET IT
RIGHT.
THEN IS THAT ALSO WOULD IT BE
BETTER TO DO SIX MONTHS TO A
YEAR MORE LEPTIN SYSTEM WITH
HOSPICE. THAT'S SO THAT'S MY
OPINION BECAUSE WE WE CAN'T
PROGNOSTICATOR.
SPECIFICALLY YOU INCUR.
I TAKE A SLIGHTLY DIFFERENT
TACK IT IN TWO WAYS ONE IS.
IF SOMEBODY'S IN ITS THE SAME
AS I WOULD DO FOR HOSPICE IF
SOMEBODY NEEDS TO RECERTIFY FOR
HOSPICE BECAUSE BECAUSE THEY
LIVED.
THIS IS A GOOD THING IF THEY
WANTED TO LET THIS IS A GOOD
THING SO I'VE JUST SEE THEM BACK
I'VE HAD IT HAPPEN TWICE AND.
IN EACH TIME.
THERE WAS JUST ACTUALLY PEOPLE
WERE HAPPY WITH WHAT WAS
HAPPENING THE SECOND IS THAT IN
OUR INSTITUTION WE DON'T. WRITE
THE PRESCRIPTION UNTIL RIGHT
BEFORE THE PERSON IS GONNA TAKE
ITS A THERE'S NOT MEDICATION
AROUND AND FOR THAT REASON ON
WEEK WE I KEEP CLOSE CONTACT SO
THAT WE CAN.
AND ANY OF THIS IS PARTLY
BECAUSE EASILY FOR MEDICATIONS
AS WELL AND SO WE KEEP CONTACTED
THE POINT WHERE THEY'VE DECIDED
THIS IS WHAT'S HAPPENING IS
MONEY PRESCRIBES IT'S A LITTLE
LESS OP PROBLEMATIC. ON IT IN IN
THESE CASES BECAUSE OF HOW WE OF
ORGANIZED AND HOW I ACTUALLY NOW
TRAIN PEOPLE ARE IN THE FRONT
LINES. THE OTHER THE OTHER
DELAYS THAT I WOULD MENTION HERE
ISPHARMACY DELAYS.
GETTING THE PHARMACISTS WHO ARE
FINDING OUT WHO THEY ARE AND
TRAINED AT CENTER LIKE WE REALLY
ONLY USE THREE PHARMACIES IN THE
WHOLE BAY AREA RIGHT NOW. TIME
AND WE'VE HAD SOME DELAYS IN
GETTING MEDICATION SO THAT'S
ANOTHER. ANOTHER A DELAY.
I AGREE WITH THE ONE ABOUT IF
THE ORIGINAL PHYSICIAN ATTENDING
PHYSICIAN FOR THE DISEASE OR FOR
THEIR AT AT AND OF LIFE BECAUSE
THAT YOU CAN ATTEND EITHER.
IS NOT PARTICIPANT.
WHAT IS THE MECHANISM HOW DO WE
MOVE SOMEONE INTO INTO AT
ANOTHER PATHWAY TO HAVE ACCESS
TO
CARE? ALL HAS HAPPENED NUMEROUS
TIMES ACTION.
GOOD THEIR SECRETS AND THEN AT
THE END I'D I'D ALSO LIKE TO
KNOW WHERE TO WHEN WE TALK ABOUT
PRESCRIBING IS IS.
IS MEDICATION AVAILABLE AND IS
IT STILL BOSSY SECOND ALL OR OR
HER ARE PEOPLE DOING DIFFERENT
THINGS NOW THAT. I CAN COMMENT
ON THAT SO OUR OUR EXPERIENCE
HAS BEEN THAT.
SECOND ALL IS AVAILABLE
AVAILABLE IT'S EXTREMELY COSTLY
AND MOST PATIENTS OTHER THAN THE
MEDI CAL PATIENTS.
DON'T HAVE THAT.
COVERAGE IN THEIR INSURANCE
FORMULARIES AND I COMMITTEE ARE
FROM THREE TO FIVE THOUSAND
DOLLARS.
SO WE HAVE MOSTLY USED SECOND
ALL FOR PATIENTS WITH MEDICAL
COVERAGE FOR THOSE WITHOUT MEDI%
CAL HAVE PRIVATE INSURANCE. WE
HAVE RELIED HEAVILY ON ONE FARM
ONE COMPOUNDING PHARMACY IN SAN
DIEGO WHOSE GEARED UP TO.
MAKE UP.
A COMPOUNDED COCKTAIL OF.
FOUR DIFFERENT MEDICATIONS
AND THEY'VE
REALLY WORKED OUT THE PROCESS
WHERE THEY'RE ABLE TO DO THIS ON
A ROUTINE BASIS BUT ALMOST NO
OTHER PHARMACY WE FOUND IS ABLE
TO DO THAT.
BUT THAT STILL UP. OFTENTIMES A
THREE THREE DAY PROCESS FOR THEM
TO GET THE PAPERWORK AND DO
THAT.
I AGREE WE ALSO USE THE FOR
COMPOUNDING AND ONE OF THE
THINGS THAT IS IS INTERESTIG IS
TO TRY AND PULL TOGETHER WHAT IS
THE BEST MEDICINE WHAT WE KNOW
WHAT IS BEST PRACTICE. AND.
SO WHAT WE'VE GOTTEN KINDS
QUITE A BIT FROM THE WASHINGTON
AND OREGON EXPERIENCE.
TYPICALLY THE A BR WASHINGTON
PHYSICIANS HAVE BEEN VERY
GENEROUS ACROSS THE STATE WITH
OTHER GROUPS AS WELL SO WE ALSO
USE THE COCKTAIL FOR MEDICATIONS
WHICH INCLUDE BENZODIAZEPINE
OPIATES AND THEN. TO OTHER
MEDICATIONS ARE AS WELL.
YEAH AND THAT DOUBTS CLOSER TO
ABOUT A FIVE HUNDRED DOLLAR COST
TIA.
SO THAT THAT CUTS THE COST
SIGNIFICANTLY INTENSE SEEM TO BE
VERY. EFFECTIVE.
I'M.
OKAY THAT MISTER IRVING. YEAH
YOU RUN KEEP TELL US ABOUT THAT
A BIT ABOUT WHAT GOT PATIENT
EXPERIENCES LIKE WHEN THEY TAKE
THAT MEDICATION FROM.
.
THE ONES THAT I'VE
GOTTEN THE KIND OF DIRECT
DESCRIPTION OF HOW IT'S IT'S SO.
HAPPENED IS THAT WHAT THEY THEY
DRINK A SLURRY OF THE
MEDICATIONS AND WITHIN.
BUT LESS THAN FIVE MINUTES THEY
LOSE CONSCIOUSNESS.
AND THEN THEY ARE REMAIN
UNCONSCIOUS UNTIL THEY STOP
BREATHING WHICH.
CAN BE VERY QUICK IT CAN BE A
HALF HOUR WE JUST HAD A PATIENT
RECENTLY TAKEN AND TOOK A CLOSER
TO TWENTY FOUR HOURS BEFORE THEY
STOP BREATHING AND DIED. SO THAT
THAT TIME FRAME IS HIGHLY
UNPREDICTABLE AND VARIABLE.
SO WE REALLY TRY TO PREPARE THE
FAMILIES FOR THAT.
POSSIBILITY THAT THERE'S A
VARIABLE TIME FRAME IN IN THAT
EXTENDED DEATH.
.
THE PATIENT STILL FELL ASLEEP
ABOUT FIVE MINUTES AND THEN TO
VERY GRACIOUSLY FOR THOSE TWENTY
FOUR HOURS YEAH AND THAT AND
WHAT WHAT IS HAPPENING.
TO THE BODY DURING THAT PERIOD.
.
THEY'RE THEY'RE BREATHING JUST
GRADUALLY SLOWS.
IN HIS CASE BECAUSE IT WAS SO
MANY HOURS.
HE WAS EXHIBITING A LITTLE BIT
OF GRIMACING WHICH MAY BE DUMB.
PERCEIVED AS POSSIBLY A LITTLE
BIT OF.
AGITATION OR DISTRESS AND SO THE
FAMILY HAD BEEN PREPARED TO TO
GIVE THEM SOME SUB SUBLINGUAL.
APPEAR IN A BENZODIAZEPINE TO
TO.
.
BUT I REALLY VOWED THAT
GRIMACING UNTIL HE HE PASSED.
THE THE PHYSICIAN THAT CARED
FOR HIM AND PRESCRIBED ALL THIS.
THOUGHT THAT PERHAPS FOR HIM
AND TOOK LONGER BECAUSE HE'D
BEEN ON FAIRLY HIGH DOSE OPIATES
UP UNTIL THE TIME THAT HE AND
JUSTIN THE MEDICATION AND SO. IT
JUST YOU KNOW TOOK LONGER
BECAUSE THE IDEA THAT I'M.
TOLERANCE TO THAT THE OP A
PORTION OF THE I'M COCKTAIL.
IT'S PROLLY MAKE SENSE.
BUT I AGREE I'VE BEEN PRESENT
SEVERAL TIMES AND ON THE OTHER
THING TO NOTE IS THAT THERE'S
MEDICATIONS THAT ARE TAKEN IN
ADVANCE OF THE SLURRY THAT TO
FOR THE PERSON ABLE TO. PULL THE
MEDICATIONS AND NOT HAVE THEM.
VOMIT THEM OR OR AND ALSO TO
HELP THEM MOVE THROUGH THAT GOT
SO THEY CAN BE ABSORBED SO
THERE'S ACTUALLY TWO ROUNDS OF
MEDICATIONS.
AGAIN SIMILARLY WE PREPARE THE
FAMILY TO DO PALLIATIVE CARE IF
IT TAKES LONGER THE QUIRK
WASHINGTON AND OREGON PHYSICIANS
THINK UP TO TWENTY FOUR HOURS
IS.
A IS WITHIN RANGE AND AND AND
CERTAINLY MOST CASES ARE IN IN
HOURS RATHER THAN MANY HOURS.
SO I WOULD AGREE WITH THAT WITH
THAT.
AND MOST OF US STAY IN CONTACT
WITH THE FAMILY DURING THE TIME
PRETTY CLOSELY BAH BYE BY PHONE
OR IN PERSON.
YET MISTER STONEMAN AND DOCTOR
QUIRK.
BACK UP TO THAT THE ACCESS
ISSUES ONE OF THE INTERESTING
THINGS AS WE ARE GOING TO THE
END OF LIFE OBSCENE ACT IN
TRYING TO SORT OUT.
SO LIABILITY QUESTIONS THAT THAT
WE ANSWERED IN THERE THE WHOLE
NOTION OF.
PROGNOSIS
CAME OUT BECAUSE IT'S AN INEXACT
SCIENCE WE BUILT IN WHAT WE DID
BECAUSE OF THE POLITICS OF IT SO
YOUR EXPERIENCE.
AND YOUR TESTIMONY AND HOW IT'S
ACTUALLY OPERATING I THINK WILL
BE VERY HELPFUL FOR US AS WE TRY
AND FIGURE OUT. NEXT STEPS OF
THEIR ARCTIC STEPS TO BE ABLE TO
ADDRESS THIS MY QUESTION THOUGH
SPECIFICALLY OF EITHER VIEW HAD
EXPERIENCE OR KNOW OF
EXPERIENCE.
ONE OF THE QUESTIONS THAT CAME
UP WITH THE CONCERNS THAT CAME
UP WAS FROM THE DISABILITY
COMMUNITY. WHO ARE BARRED FROM
BEING ABLE TO TAKE ADVANTAGE OF
THIS BECAUSE THEY CANNOT
NECESSARILY TAKE THE MEDICATION
THEMSELVES AND YOU BROUGHT UP
SOME OF THE?
THE REASONS THAT PEOPLE ARE ARE
DYING OR EVEN SOMEONE WHO HAS
OTHER UNRELATED DISABILITIES WHO
IS DYING GOING THROUGH MEETS ALL
THE CRITERIA.
BUT FOR THE ABILITY TO TAKE THE
MEDICATION THEMSELVES HAVE YOU
HAD.
DISABLED FOLKS ASK ABOUT THIS
AND AND.
BEEN DENIED THE ABILITY BECAUSE
OF THE RESTRICTIONS WERE PUT IN
THE IN THE LAW.
YES I I RECALL ONE PATIENT
PARTICULAR THAT WAS.
I WENT THROUGH. HORRIBLE
DISTRESS OVER THIS HE HAD A
NARROW DEGENERATIVE DISORDER.
SIMILAR TO A ALAS AND YOU KNOW
UNTREATABLE AND HE AT THE POINT
THAT HE CAME TO ME HE ONLY HAD
USE OF ONE HAND. HE WAS
OTHERWISE PRETTY MUCH COMPLETELY
PARALYZED HE CAN STILL SWALLOW.
AND HE WAS IN PAIN ALL THE TIME
HE WAS BED BOUND.
.
BUT AT THAT POINT IN TIME HIS
NEUROLOGIST WAS ADAMANT THAT HE
WAS.
IT CERTAINLY DID.
DISABLED BUT STABLE.
AND HE DID NOT BELIEVE THAT
THIS PATIENT WOULD DIE IN THE
NEXT SIX MONTHS BUT
UNFORTUNATELY HE MIGHT LOSE THE
USE OF HIS HAND IN THE NEXT SIX
MONTHS SO. THIS CREATED A
HORRIBLE DISTRESS FOR THIS
PATIENT.
WHO A LIKE I SAID GOT GOT
TRAPPED IN THAT?
GROUP.
I'VE I'VE HAD TO ONE THAT WANT
ONE WAY AND ONE WENT TOGETHER
I'M I HAD SOMEBODY WHO ON IT WE
EXPAND THIS TO THE ETHICS
COMMITTEE A PERSON WHO IF. DOT
WHO WAS NO LONGER ABLE TO
SWALLOW BUT COULD TAKE THE
MEDICATIONS THROUGH THE G. TO.
AND.
IF SHE DIDN'T EAT IF SHE DIDN'T
EAT OR DRINK SHE WOULD DIE AND
SET THEM THEN THEN YOU'RE
ALLOWED TO DO THAT BY LAW YOU
CAN STOP EATING AND DRINKING
IT'S A WAY OF REFUSING
TREATMENT.
AND THE QUESTION WAS IT COULD
YOU ALSO DO WITH THIS.
IF YOU'D REFUSE TO WERE NOT
ABLE TO HAVE THAT TREATMENT THAT
WOULD ALLOW YOU TO EAT AND DRINK
TO YOU HOW
TO BE E. EVEN DRINK THROUGH THE
TUBE. AND THE ETHICS COMMITTEE
SAID OUGHT KNOWS THAT YOU DO YOU
DO YOU CAN ACTUALLY DO THAT IN
THIS PARTICULAR PERSON'S CASE I
WAS ALSO CONCERNED ABOUT
DEPRESSION AND. AS IT TURNSOUT
WHEN WE WERE ABLE TO TREAT
DEPRESSION WE WERE ABLE TO.
ISSUES THAT SHE MADE A
DIFFERENT DECISION FOR HERSELF
AND IT'S JUST A REMINDER HOW
CRUCIAL IT IS FOR SOMEONE TO BE
REALLY HEARD IN THEIR IN THEIR
PAIN AND THEIR SUFFERING. THEIR
DEFINITION OF SUFFERING NOT MY
DEFINITION OF SUFFERING.
I'M SO THAT'S A CASE WHERE THE
PERSON ON A WAS DISABLED AND ARE
IN THEIR OWN IN THEIR OWN WAY.
I HAD TO HAVE SUCH A CASE WHERE
SOMEONE THERE WAS CONCERN ABOUT
COERCION.
AND I WANT TO APPRECIATE THE
IMPORTANCE OF.
ATTEMPTING THE LIVES OF DISABLED
PEOPLE WHO MAY BECAUSE THEY'RE
NOT BE IT MAY BE BECAUSE THEY'RE
NOT HONORED APPRECIATED OR
WHATEVER SOCIETAL REASONS THAT
ARE HAPPENING. THAT THEY MAY
FEEL THAT THEY HAVE NO TREATMENT
OPTIONS OR ACTUALLY AREN'T OFFER
TREATMENT OPTIONS AND THAT THE
LAW IS INTENDED TO PROTECT.
FOR THAT AS WELL WITH TWO PEOPLE
MAKING THE DETERMINATION OF SIX
MONTHS OR LESS AND AT A JUDGMENT
THE A QUICK JUDGEMENT TO SEE
WHETHER NOT WE SHOULD BE DOING
SOMETHING ELSE TO INTERVENE AND
SOCIAL WORKER BEHAVIORAL SCIENCE
OR PSYCHIATRY. DOT HAD SOMEBODY
AND AND IT WAS ACTUALLY.
LISTENING CAREFULLY TO THE
DISABILITY COMMUNITY HAS SOME
ONE OF THE REASONS I FEEL LIKE.
THE AMOUNT OF BARRIERS THAT WE
HAVE NOW WHILE ONEROUS FOR SOME
ARE NECESSARY FOR SOME AS WELL
AND I'M ON BOARD WITH THEM AND
AND I. WOULD COMMENT I DO LIKE
THE FACT THAT THE LAW MANDATES
AT LEAST ONE CONVERSATION WITH
THE PATIENT ALONE WHICH I THINK
IS
VERY IMPORTANT AND KIND OF IN A
BUSY CLINIC.
IT MIGHT BE EASY TO FORGET TO DO
THAT SO I LIKE THAT IT'S BUILT
THEM LIKE OKAY I'VE GOT TO DO
THIS I'VE GOT A HOUSE THE FAMILY
LEAVE BEEN. AND IN EVERY CASE
I'VE HAD WHERE I'VE DONE THAT I
I FELT MUCH BETTER THIS YA GOTTA
MELONES THIS REALLY WHAT YOU
WANT AND. YOU KNOW I FELT VERY
ASSURED THAT THIS WAS REALLY
BEING DRIVEN BY THEM AND NOT
THEIR FAMILY BECAUSE SOME OF
THESE PATIENTS BECAUSE THEY'VE
BEEN SO ILL. AND DEBILITATED FOR
SO LONG FAMILY MEMBERS STEP IN
AND THEY BECOME THE.
COMMUNICATOR FOR THEM AND THEY
COME AND THEY WANT TO DO ALL
TALKING AND YOU KNOW PRETTY SOON
THE PATIENT'S KINDA LOST WHERE
THEY'VE THEY'VE HANDED THIS.
ROLL OVER TO THEIR FAMILY
MEMBERS AT SOMETHING LIKE THIS
ONE TO MAKE SURE THAT THEY'RE
NOT DRIVING AT THAT IT IS FROM
THE PATIENT.
IT AND WE WERE VERY COGNIZANT OF
THAT BUT THERE ARE CERTAIN
PEOPLE
WITH DISABILITIES WHO WOULD
OTHERWISE QUALIFY BUT WON'T AND
THEY HAVE EXPRESSED SOME
FRUSTRATION. WITH THE NOTION OF
COURSE AND THEN AND PEOPLE
DISABILITIES IN THEIR ADVOCATES
REALLY DO UNDERSTAND THIS THAT
THERE ARE SOME OF THE SUCH%
UNFORTUNATELY WHO ARE GETTING
THE MESSAGE FROM THEIR FAMILY
YOU WOULD WE WOULD BE BETTER
OFF.
IF YOU MADE THIS DECISION WHICH
IS EXACTLY WHAT WE DON'T WANT
THROUGH THIS PROCESS AND
BUILDING IN. CHECKS AND BALANCES
BUT AS WE LEARNED ABOUT IT IN
FOR POLICY MAKERS STANDPOINT.
ZIP TO BE UNDERSTANDING OF. THE.
THOSE NUANCES AND INSURING THAT
THE PROGRAM WILL BE SUCCESSFUL
THAT WERE.
ABSOLUTELY OF WINNIE ANY
COERCION OR ANY OTHER DECISION
ALONG THAT LINE. BUT STILL
ENSURING THAT PEOPLE WHO.
NEED TO TAKE ADVANTAGE WHO WANTS
TO TAKE ADVANTAGE OF THIS AS AN
OPTION AND EVEN IF IT'S JUST THE
PEACE OF MIND OPTION. THEN THEY
SHOULD BE ABLE TO TO CONSIDER
THAT SO WE.
WE HAVE A LOT A LOT OF WORK TO
DO BUT YOUR EXPERIENCE YOUR
TEACHING THE THINGS THAT YOU'RE
BRINGING TO US NOW OVER TIME.
WILL HELP US SORT THROUGH ALL OF
THE CITY RECOMMENDATIONS
VERY POOR AND FOREST'S.
AND AND ONE ONE THING WE'VE
BEEN.
RECENTLY DELIBERATING ON BECAUSE
OF A PATIENT THEY GOT STALLED
BECAUSE SHE CAN GET OUT THE
HOUSE TO GET THE UNTIL NEXT
APPOINTMENT WAS AND THE LAWS
SILENT ON THIS WHETHER. ANY OF
THESE VISITS CAN BE DONE VIA
TELEMEDICINE.
BUT SINCE OF SILENT THAT WE
WOULD PRESUME IT'S ALLOWABLE AND
WE'RE STARTING TO TALK ABOUT
THAT OPTION THAT IF IT.
WE PREFER TO HAVE THE PATIENT
WITH US
BUT IN A CASE WHERE THERE REALLY
BED BOUND THIS IS REALLY
BURDENSOME COULD WE SET UP YOU
KNOW AT LEAST ONE OR TWO OF THE
VISITS TO BE VIA TELEMEDICINE
AND. AND THAT WOULD TAKE CARE OF
ONE OF THE HURDLES THAT
SOMETIMES ARISES.
TOOK A QUICK.
ARE JUST BRIEFLY SECOND ALL I
WOULD HAVE THOUGHT THAT WOULD BE
A GENERIC THAT COULD BE
MANUFACTURED FAIRLY
INEXPENSIVELY Y. ISSUE THREE TO
FIVE THOUSAND DOLLARS.
YOU WOULD HAVE TO ASK THE
PHARMACEUTICAL INDUSTRY THAT
THERE'S NO REASON. COST WINNER
RIGHT AFTER WE PASSED THE ACT
MISTER YEAH.
YEAH LA ITS PRICE GOUGING
SURPRISING NELSON THANK YOU.
SO I GUESS AS A RESULT OF MY
EXPERIENCES THE CHANGES I WOULD
CONSIDER THAT I WOULD LIKE TO
SEE. US AGAIN I WAS THAT ONE TO
TOUCH ON THE OPTION OF
INTRODUCING TELEMEDICINE END OF
THIS PROCESS.
.
I THINK OUR ORGANIZATIONS IN
GENERAL PRACTICES IN GENERAL
ALSO NEED TO SUPPORT CLINICIANS
WHO ARE WILLING TO ENABLE THEM
TO BE DOING HOME VISITS.
RIGHT NOW YOU KNOW MOST ARE
PRACTICES JUST DON'T ALLOW YOU
THE TIME OF THE LUXURY TO GO TO
SOMEONE'S HOME BUT MANY OF US
WOULD BE WILLING TO DO THAT.
IF NEEDED.
.
ALL THE CHALLENGES AROUND
HOSPICE NON PARTICIPATION TO ME
AS CREATIVELY A LOT OF HURDLES
FOR THESE PATIENTS SO. I WOULD
REALLY ENCOURAGE INCREASED JOB
PARTICIPATION BY HOSPICE
ORGANIZATIONS.
IF I COULD CHANGE THE LAW. I
WOULD CONSIDER REDUCING THE
MANDATED FIFTEEN DAY TIMEFRAME
BETWEEN ATTENDING VISITS DOWN TO
MAYBE SEVEN TO TEN DAYS WHICH.
AS I DESCRIBED EARLIER THESE
EVERY FEW TWO TO THREE DAYS
ADDED DELAYS FOR THESE PATIENTS
CAN SOMETIMES BE EXCRUCIATING.
AND I DON'T THINK THERE WOULD BE
A BIG DIFFERENCE BETWEEN A TEN
VERSES A FIFTEEN DAY TIME FRAME.
AND THEN CONSIDERING THE
POSSIBILITY OF EXTENDING THE
PROGNOSIS FROM LESS THAN SIX
MONTHS TO ANNOUNCE LESS THAN
TWELVE MONTHS.
TO TO ALLOW SOME THESE OTHER
VERY SUFFERING PATIENTS.
ACCESS.
SO. IN CLOSING.
I RECOGNIZE THE NEED TO HAVE
PARAMETERS LIMITATIONS TO THE
PRACTICES OBEYED AND DYING. A
WILL NEVER WILL LIKELY NEVER
ACHIEVE A PERFECT BALANCE
BETWEEN THESE TWO.
DESPITE SUCH CHALLENGES I
FIRMLY BELIEVE ALLOWING AID IN
DYING IS A STEP IN THE RIGHT
DIRECTION TO SUPPORT PATIENT
SELF DETERMINATION AND AUTONOMY
IN THEIR OWN CARE SO. THANK YOU
AGAIN FOR ALLOWING US TO COME.
THANK YOU BOTH FOR YOUR
TESTIMONY CLEARLY WE COULD TALK
TO YOU ALL DAY. AND IT'S ABOUT
MY NO FOR ALL OF US FASCINATING
OR HOME FASTENINGS WERE BUT.
THERE WAS SO I MEAN THERE WERE.
SO MUCH NEGOTIATING AND AND
DIALOGUE AROUND. EVERY PIECE OF
POLICY WE SET UP SODA TO BE ABLE
TO HEAR. HOW IT WE HOW IT WORKS
IN REAL LIFE?
?
IS I MEAN IT IT IT IS BRINGS A
FULL CIRCLE FOR POLICY MAKERS
AND SEE THEN HOW WE CAN IMPROVE
IT. GOING FORWARD I COMPLETE MY
DISSERTATION IN TWO THOUSAND TWO
ONE AND OF LIFE AND AT THAT TIME
WHEN THE BIG TAKEAWAYS WAS WE
REALLY NEEDED TO HAVE A LOT MORE
CONVERSATIONS WITH PHYSICIANS
AND ANY TRAININGS. A AROUND AND
OF LIFE AND HOW WE HOW WE TALK
ABOUT THAT.
SO IT'S GOOD TO SEE IS MOVING
ALONG AND I THINK I I HERE YOU
GO ST CAN STILL MOVE MORE BUT I
THINK HOPEFULLY WITH THE PASSAGE
OF THIS. IT ALSO JUST PROVIDES A
ONE MORE IMPETUS FOR US TO HAVE
FULL DIALOGUES AROUND WHAT ARE
OPTIONS AND OF LIFE.
THANK YOU BOTH VERY MUCH FOR
YOUR THINK THINK YOU I JUST WANT
TO TAKE TO AREN'T RE EDIT THEM
TO AGREE TO AL WITH DARK SECRETS
ABOUT THE TELE TELEMEDICINE. WE
TAKE CARE PEOPLE ACROSS THE
STATE OF CALIFORNIA AND IT WOULD
BE IT WOULD ACTUALLY BE AYE I
THINK A GREAT SERVICE TO THOSE
PATIENTS NOT THE ONE WE HAVE TO
SPEAK TO THEM PRIVATELY BUT AT
LEAST ONE OF US THEY DON'T HAVE
TO TRAVEL AS FAR. THANK YOU
THANK YOU.
I WOULD JUST POINT OUT ON THAT
MADAM CHAIR THERE'S NOTHING IN
THE LAW AS WRITTEN PROHIBITS
TELEMEDICINE.
WE HAVE A VERY BIG STATES OKAY
THANK YOU VERY MUCH AND NEXT UP.
UP FROM THE HEALTH SYSTEM
PERSPECTIVE WE HAVE BY AND YOU
CAN ALL COME TO THE SAME TOM
TIME DOCTOR NEEDS AND FAIRMAN
FROM UC DAVIS DR CINDY CAME UCLA
AND DOCTOR NEIL. WHITNER FROM
UCLA.
WELCOME TO ALL OF YOU.
AND MELISSA STERN FROM CHRIST.
NOW MADAM CHAIR AND COMMITTEE
MEMBERS AT THANK YOU FOR HAVING
US IT'S A PLEASURE TO BE HERE A
MINUTE UP TRY KEEP MY COMMENTS
BRIEF BECAUSE I SUSPECT THERE'S
GOING TO BE QUITE A BIT OF
REDUNDANCY NAM.
BETWEEN ABOUT FORTY MINUTES FOR
YOUR SECTION
SURE SO.
NOT JUST YOU HOW.
BY BRIEF I MET FORTY MINUTES FOR
ME.
THURSDAY.
.
MY NAME IS NATHAN FAMINE I'M A
DOCTOR AT UC DAVIS AND I WHERE.
A BUNCH OF DIFFERENT HATS THERE
I'M I PRACTICE IN THE HOSPITAL
IN PALLIATIVE CARE AND ALSO IN
PSYCHIATRY. AND I WORK IN THE
CANCER CENTER I RUN A CLINICAL
PSYCHOLOGY THERE AND I DIRECT
SUPPORT ONCOLOGY SERVICES IN THE
CANCER CENTER.
AND IN THE MEDICAL SCHOOL I
DIRECT BIOETHICS EDUCATION.
SO I I WHERE A BUNCH DIFFERENT
HATS I MADE A DECISION ABOUT.
AROUND THE TIME THE LAW PASSED
THAT I MYSELF WOULD PARTICIPATE
AS AS A PROVIDER. AND I'VE DONE
SO IN THE ROLE OF AN ATTENDING
AND ALSO THE CONSULTANT AND ALSO
AS A MEDICAL SPECIALIST.
THAT HAPPEN I'M WEARING THIS
MORNING THOUGH IS THAT I'M THE
MEDICAL DIRECTOR OF THE END OF
LIFE OPTION ACT PROGRAM AT UC
DAVIS AND I WANT TO SHARE WITH
YOU.
FROM AN INSTITUTIONAL
PERSPECTIVE
SOME OF THE ELEMENTS OF OUR
PROCESS FOR DEVELOPING OUR
POLICY. AND SOME OF THE
SUCCESSES WE'VE HAD AND A FEW OF
THE CHALLENGES AS WELL.
SO.
IN TERMS OF DEVELOPING OUR
POLICY THE.
OUR POLICY COMES OUT OF THE
MEDICAL STAFF. AND
ADMINISTRATION OFFICE IN THE
HEALTH SYSTEM AND.
AFTER THE LAW WAS PASSED.
AND BEFORE WE WENT INTO A FACT
OUR CHIEF MEDICAL OFFICER
CONVENE TO WORK GROUP WHICH I
CHAIR WHICH HAS REPRESENTATION
FROM. PATIENT CARE SERVICES IN
THE HOSPITAL THE CANCER CENTER
OUR PHARMACY OUR PRIMARY CARE
NETWORK I'M OUR PALETTE OF CARE
PROVIDERS AYE UC DAVIS OPERATES
AN IN HOUSE HOSPICES WHILE IN A
I HAD MEMBERSHIP AND THAT WORKER
TO.
I SAID THAT GROUP CAME TOGETHER
TO DEVELOP THE POLICY. AND.
ARE I WANNA JUST CHAIR A FEW
ELEMENTS OF OUR POLICY BECAUSE
THEY.
SPEAK TO A COUPLE OF STEPS THAT
GO ABOVE AND BEYOND ARE THE
ELEMENTS IN THE LAW.
ARE.
ARE PROCESS INVOLVES A ROLE FOR
A PATIENT NAVIGATOR. AND THAT'S
NOT UNCOMMON IN INSTITUTIONS ARE
OUR NAVIGATOR IS AN LCSW. AND
THEY.
PROVIDE TWO FUNCTIONS ONE IS.
ONE IS A NAVIGATION FUNCTION
FOR THE PATIENT ON THE PROVIDER
TO HELP THEM.
GETS THROUGH THE SAFEGUARDS
THAT ARE IN THE LAW.
BUT THE SECOND IS A CLINICAL
ROLLED THE LCSW DOES A
PSYCHOSOCIAL ASSESSMENT WHICH.
WE CONCEIVE AS ESSENTIALLY AND
INITIAL BROAD PALETTE OF CARE
SUSSMAN.
TRYING TO IDENTIFY UNMET NEEDS
FOR SUPPORT.
THAT WILL HELP THE PHYSICIAN
PROM PARTICIPANTS IN.
ADDRESSING THOSE NEEDS.
ANOTHER ELEMENT THE POLICY AS I
MENTION IS THAT THERE'S A ROLE
FOR MEDICAL DIRECTOR. I HAVE
SUPPORTED TIME.
TO HELP WITH OUR EDUCATIONAL
PROGRAMMING.
I DO DOCTOR DOC CONSULTATION ON
ALMOST ALL OF THE CASES THAT
COME BEFORE US.
THE PENSION NAVIGATORS AND I
ROUND WEEKLY ON ALL THE CASES
THAT WE'RE CONSIDERING.
AND.
I HAVE AN ACCOUNTABILITY AND
REPORTING FUNCTION WITH OUR
CHIEF MEDICAL OFFICER AND THEN
RUN THE THIS WORKGROUP MEETING
THAT IS ITERATIVELY LOOKING AT
OUR POLICY.
OUR OUR WORK FLOW ALSO INVOLVES
A SET OF DOCUMENTATION TEMPLATES
WHICH WERE BUILT AND
INCORPORATED INTO ELECTRONIC
MEDICAL RECORD.
A THE AIM OF WHICH IS TO HELP.
MAKE MORE EFFICIENT THE PROCESS
FOR PROVIDERS HAVE CHOSEN TO
PARTICIPATE. AND ALSO TO KEEP
THEM IN COMPLIANCE.
AND THEN THERE SEVERAL LAYERS OF
OVERSIGHT AND ACCOUNTABILITY.
THAT ARE BUILT INTO OUR POLICY.
.
WHY ONE IS THAT WITH EACH FORMAL
REQUEST OF AN ATTENDING
PHYSICIAN?
THAT REQUEST TRIGGERS A
NOTIFICATION TO THE.
.
TO OUR LEGAL DEPARTMENT TO THE
ON CALL BIOETHICS CONSULTANT TO
THE CHIEF MEDICAL OFFICER AND TO
OUR SENIOR PHARMACIST.
JUST TO LET THEM KNOW THAT
THERE'S A NEW CASE THAT'S IN THE
PIPELINE.
I MENTIONED THAT WE ROUND WEEKLY
ON ALL THE CASES BEFORE US. OUR
HEALTH SYSTEM WORK GROUP.
MEETS MONTHLY AND.
AND HAS A A PROCESS WHERE THEY
WERE WE REVIEW SOME OF THE.
MORE CHALLENGING CASES THAT
WE'VE HAD.
AND THEN RETROSPECTIVELY ALL
QUALIFIED.
OUT CASES OF PATIENTS WHO
QUALIFIED ARE REVIEWED
RETROSPECTIVELY BY OUR. BY OUR
BIOETHICS COMMITTEE AND THEY.
REPORT BACK TO THE HOUSE SYSTEM
WORK GROUP TO GET
RECOMMENDATIONS ABOUT.
REFINEMENTS IT MIGHT BE NEEDED
FOR THE POLICY. SO THAT I HOPE
JUST GIVES A SENSE OF SOME OF
THE.
IN A BRIEF Y. SOME OF THE STEPS
THAT WENT INTO DEVELOPING OUR
POLICY.
HELPED APPOINT TO A COUPLE OF
THINGS AND I THINK SHE AS
SUCCESSORS AND THEN A FEW
CHALLENGES.
.
IN TERMS OF SUCCESSES IT IN OUR
EARLY DISCUSSIONS IN THE HOUSE
SYSTEM IT WAS.
FELT TO BE A VERY IMPORTANT
POSITION AID IN DYING AS AN
OPTION OF LAST RESORT.
AND THAT.
DOT LANGUAGE ACTUALLY COMES
FROM THE AFFECTS LITERATURE IN
THE PALETTE OF CARE LITERATURE
THAT LOOKS AT AS DOCTOR SEAT
ACROSS SHOOTER CHRIS MENTIONED
EARLIER THAT.
ESSENTIALLY SAYS THAT IN MOST
CASES HIGH QUALITY PALETTE OF
CARE IS EFFECTIVE.
AT ALLEVIATING THE SUFFERING
WHICH MIGHT OTHERWISE PRINT
SOMEONE TO PURSUE AN EIGHT AND
NINE DRUG. BUT NOT IN ALL CASES
AND.
SO THE IDEA FOR US
INSTITUTIONALLY IS THAT IF WE'RE
GOING TO PARTICIPATE IN THE US
AND WE NEED TO DO SO IN THE
CONTEXT WHERE PATIENTS HAVE GOOD
ACCESS TO ARMS. RETAIN ON THE
FLIGHT CARE. AND THE EVIDENCE
THAT WE'VE BEEN SUCCESSFUL
WITHOUT ISN'T ALL OF OUR
QUALIFIED PATIENTS HAVE BEEN
ENROLLED IN EITHER HOSPICE OR
I'M A SIMILAR PROGRAM THAT'S
CALLED HOME BASE PALETTE OF
CARE.
SO I WOULD CONSIDER THAT A
SUCCESS.
AND WE'VE ALSO BEEN QUITE
SUCCESSFUL IN MY VIEW WITH
EDUCATIONAL OUTREACH WHICH ARM
AS MENTIONED EARLIER IS A REAL
CHALLENGE. WE'VE.
DIDN'T THIS IS LARGELY FALLEN
UNDER MY RESPONSIBILITY BUT
WE'VE CREATEDTO.
CME SESSIONS AND ON OUTREACH TO
NEARLY ALL PHYSICIANS IN OUR IN
OUR HOUSE SYSTEM.
AND WE'VE ALSO DONE ARE SIMILAR
EDUCATIONAL OUTREACH TO SEVERAL
OF THE FELLOWSHIP IN RESIDENCY
PROGRAMS.
WITH ALSO AND CREATED A THREE
HOUR.
.
STANDARDIZED PATIENT BASED
DIDACTIC FOR MEDICAL STUDENTS
ARE ALL MEDICAL STUDENTS TECH
THAT LAST YEAR AND WERE DOING
THE NEXT ONE THIS YEAR IN A FEW
WEEKS.
AND WE'VE ALSO DONE SOME OUT
RICH WITH OTHER NON PHYSICIAN
GROUPS AND OUR HOUSE SYSTEM TO
HELP IMPROVE THEIR EDUCATION
ABOUT THE LAW. AND US ABOUT OUR
POLICY.
THE LAST THING I WOULD SAY.
WHICH I'M I'M PARTICULARLY
PROUD OF IS THAT I THINK WE'VE
BEEN EFFECTIVE IN LEVERAGING
INTEREST AND THIS LAW.
TO.
CREATE EXPANDED ACCESS TO
PALLIATIVE CARE.
AND THERE'S THERE'S AN
INTERESTING PARALLEL
INSTITUTIONALLY ARMS TO WHAT
HAPPENS ARE IN THE CLINIC.
WHAT WHAT WE TELL PROVIDERS IS
THAT WHEN A PATIENT ASKS YOU
ABOUT THIS LAW?
OFTEN THAT QUESTION IS
UNDIFFERENTIATED THAT REALLY
ASKING YOU FOR HELP
UNDERSTANDING WHAT'S GONNA
HAPPEN TO THEM AND WHAT. HOW
THEIR DISEASE WILL PROGRESS WHAT
SYMPTOMS MAY EMERGE HOW THEY GET
THE SUPPORT THAT THEY NEED?
AND SHOW THAT THAT'S A THAT'S
NOT AN UNFAMILIAR QUESTION FOR A
PALETTE OF CARE PROVIDER. AND
THE IDEAS THAT FROM DOWN THE
INTEREST AND THE END OF LIFE
OPTION ACT YOU ARE ABLE TO HAVE
A VERY BROAD AND TERADYNE
DISCUSSION WITH THE PATIENT. IN
THE SAME THING'S HAPPENING
INSTITUTIONALLY
YOU KNOW THE.
THE LEGISLATURE AND AND AND THE
PUBLIC ARE TELLING US THAT THEY
WANT ACCESS TO THIS OPTION WE'VE
USE THAT TO LEVERAGE HAN.
A GREATER ACCESS TO PALLET OF
CARE.
THE EVIDENCE FOR THAT IS THAT
ARMOR HOUSE SYSTEM MADE A VERY
LARGE INVESTMENT AND.
EXPANDING PALETTE OF CARE INTO
OUR PRIVATE CARE NETWORKS AND TO
THE CANCER CENTER ARM AND ALSO
ARE SOME STAFFING IMPROVEMENTS A
PALETTE OF CARE IN THE HOSPITAL
AND I DON'T THINK THOSE ARE
COINCIDENTAL.
IN TERMS OF CHALLENGES ARMED.
THEY ARE OUT HOW POINT OUT TO
VERY BRIEFLY BECAUSE I THINK
THERE WERE ALL OF US WOULD
PROBABLY AGREE THESE ARE ISSUES
ON.
PHYSICIAN PARTICIPATION IS LOW
AND.
THAT PRESENTS A CHALLENGE HAS
DOCTOR SEAT A QUEST NIGHTFORCE
MENTIONED WHEN A PATIENT MAKES A
REQUEST TO A DOCTOR WHO KNOWS
THEM BUT HAS CHOSEN NOT TO
PARTICIPATE. WE'VE HAD TO.
COME UP WITH THAT AN EFFICIENT
PROCESS TO GET THOSE PATIENTS
QUICKLY REFERRED TO
PARTICIPATING PROVIDERS.
AND ON IN THE SAME VEIN WE'VE
HAD TO PAY ATTENTION TO HOW TO
SUPPORT THOSE PROVIDERS
SO THAT THEIR PRACTICE ISN'T
EXCLUSIVELY ENRICHED IN.
IN END OF LIFE OPTION ACT.
QUERIES.
SO THAT'S BEEN ON CHALLENGE HOW
TO DO THAT THE OTHER.
.
THE OTHER HAS CHALLENGE HAS BEEN
THAT WE'VE FOUND THAT THIS.
PROCESS REQUIRES A LOT OF
MANAGEMENT.
.
IT AND IN SOME RARE CASES AT THE
PATIENT.
THEMSELF.
HAS THE RESOURCES TO SORT OF
SUPPLY THAT MANAGEMENT THEY'RE
FEELING WELL ENOUGH AND THAT GOT
HIGH HEALTH LITERACY THEY'RE
VERY EFFECTIVE ADVOCATES AND
THEY CAN PUSH ON TO GET THROUGH
THE STEPS IN THE PROCESS. IN
OTHER CASES OF POSITION MIGHT BE
MOTIVATED.
TO PROVIDE SOME OF THAT
MANAGEMENT BUT IN MOST CASES IT
REQUIRES A LOT OF WORK ARE BY
THE PATIENT NAVIGATOR. ARM TO
HELP.
SHEPHERD THE PROCESS ALONG AND
I THINK.
I THINK THAT IT REQUIRES THAT
MUCH MANAGEMENT.
REPRESENTS A POSSIBILITY THAT
THERE WILL BE SOME ISSUES AND
FAIRNESS AND ACCESS WHICH WE
WERE ALLUDED TO EARLIER SNOW.
AND THINK FOR MY TIME AND BE
HAPPY TO TAKE QUESTIONS.
I THINK WE'LL WE'LL HEAR FROM
EVERY PERSON IN AND THEN GO BACK
I THINK YOU VERY MUCH.
THANK YOU MADAM CHAIR AND
MEMBERS OF THE COMMITTEE I MY
NAME IS CINDY KANE AND I'M A
FACULTY MEMBER AT UCLA AND
HEALTH POLICY AND MANAGEMENT
WHICH IS PART OF THE SCHOOL OF
PUBLIC HEALTH. AND I'M HERE TO
REPORT ON SOME OF THE RESEARCH
WE'RE DOING AT UCLA RELATED TO
HOW DIFFERENT HEALTH SYSTEMS
ACROSS THE STATE HAVE RESPONDED
TO THE END OF LIFE OPTION ACT.
BEFORE YOU TELL YOU ABOUT THE
PARTICULARS OF THE STUDY I'D
LIKE TO NOT ACKNOWLEDGE THE
CALIFORNIA HEALTHCARE
FOUNDATION.
AND THE STOP SKI FOUNDATION FOR
THEIR SUPPORT IN THIS RESEARCH.
SO WHILE THE END OF LIFE OPTION
ACT MADE PHYSICIAN AID IN DYING
LEGALLY AVAILABLE TO
CALIFORNIANS THE LAW ALSO ALLOWS
PROVIDERS AND HEALTH CARE
SYSTEMS TO CHOOSE NOT TO
PARTICIPATE.
SO SOME HEALTHCARE SYSTEMS HAVE
DECIDED NOT TO PROVIDE PHYSICIAN
AID IN DYING AT ALL OR IN SOME
CASES EVEN NOT ENGAGE IN
DISCUSSIONS ABOUT THE OPTION.
OTHERS HAVE DECIDED TO PROVIDE
THE OPTION UNDER SPECIFIC
CIRCUMSTANCES AND DEFINE THOSE
CIRCUMSTANCES AND PROCESS SEASON
A VARIETY OF WAYS. AND STILL
OTHERS HAVE DECIDED TO LEAVE THE
DECISIONS ENTIRELY UP TO
PHYSICIANS ABOUT IF THEY WILL
PARTICIPATE AND WHAT
IMPLEMENTATION LOOKS LIKE FOR
THEM.
WE CURRENTLY DO NOT HAVE
ADEQUATE ESTIMATES OF THE
PROPORTION OF HEALTHCARE SYSTEMS
THAT HAVE ADOPTED EACH OF THESE
DIFFERENT STRATEGIES. AND AS A
PRACTICAL MATTER THE DECISIONS
AT THE ORGANIZATIONS MAKE
INFLUENCE THE KINDS OF DECISIONS
THAT PATIENTS CAN MAKE AND
ULTIMATELY INFLUENCE THESE
QUESTIONS OF ACCESS.
SO UCLA WE ARE CURRENTLY
CONDUCTING AN ASUS A SYSTEM
SURVEYS SO WE'VE DESIGNED A
SURVEY OF HEALTH SYSTEMS ACROSS
THE STATE. WE WANT TO UNDERSTAND
HOW MANY OF THE SYSTEMS HOW OF
POLICIES IN PLACE AND WHAT THOSE
POLICIES INCLUDE AND WHAT THOSE
POLICIES DON'T INCLUDE.
WE'RE CURRENTLY IN THE MIDDLE OF
THE DATA COLLECTION STAGE AND SO
FORMAL RESULTS FROM THIS
ANALYSIS WILL BE. A AVAILABLE
ONCE THE DATA COLLECTION AND
ANALYSIS IS COMPLETE.
BUT WE DO HAVE A FEW INITIAL.
IMPRESSIONS THAT WE THINK MAY
INFORM SOME OF THESE QUESTIONS
ABOUT IMPLEMENTATION OF THE END
OF LIFE OPTION THAT.
SO MANY OF THESE THINGS YOU'VE
HEARD FROM OTHERS SPEAKERS TODAY
AND I'M SURE YOU'LL HEAR
THROUGHOUT THE DAY.
SO I'D LIKE TO REAFFIRM THE
IMPORTANCE OF OF SOME OF THESE
POINTS. SO FIRST VERY LITTLE
PUBLIC INFORMATION EXISTS ABOUT
HOW DIFFERENT HOLE SYSTEMS HAVE
CREATED POLICIES AND WHAT THOSE
POLICIES INCLUDE. SO BECAUSE OF
THIS IT'S LIKELY DIFFICULT FOR
PATIENTS TO KNOW IF THERE
PROVIDERS WOULD BE ABLE TO WRITE
PRESCRIPTIONS REGARDLESS OF THE
INDIVIDUAL PROVIDERS OWN
PERSPECTIVE.
AND EVEN BEYOND ACCESS TO THE
OPTION IN TERMS OF IF A POLICY
EXISTS OR NOT. WE'VE HEARD FROM
SEVERAL PROVIDERS WHO HAVE TAKEN
OUR SURVEY ALREADY THAT PATIENTS
LACK KNOWLEDGE ABOUT THE
PROCESS.
AND THAT THEY WISH FOR MORE
INFORMATION ABOUT IF THE OPTIONS
AVAILABLE TO THEM AS WELL AS THE
STEPS THAT THEY HAVE TO TAKE.
BOTH THE STEPS THAT ARE
DETERMINED BY THE LAWS WELLS THE
STEPS THAT ARE DETERMINED BY THE
ORGANIZATIONS THEMSELVES.
WELL SOME HEALTH SYSTEMS HAVE
EXPRESSED CONCERNS ABOUT MAKING
THEIR POLICIES AND PROCEDURES
AVAILABLE TO THE PUBLIC.
MANY PROVIDERS HAVE SAID THAT
THIS TYPE OF STEP WOULD MAKE IT
EASIER FOR PATIENTS TO FIND
INFORMATION.
MANY HAVE ALSO EXPRESSED LOW
THAT THE A CONSOLIDATION OF
INFORMATION ABOUT THESE POLICIES
ABOUT DIFFERENT APPROACHES NEED
TO BE COMING FROM NEUTRAL
SOURCES AND INCLUDE THE ENTIRE
RANGE OF END OF LIFE APPROACHES.
NOT JUST THE END OF LIFE OPTION
ACT.
pHEARD QUITE A BIT. IS THAT
PROVIDERS FROM A DIVERSITY OF
ORGANIZATIONAL SETTINGS HAVE
REPORTED THAT WHEN THERE'S A
PROVIDER WHO IS NOT WILLING OR
ABLE TO WRITE A PRESCRIPTION FOR
THE INDICTMENT OCCASIONS. IT'S
DIFFICULT TO KNOW WHAT TO DO
NEXT FOR THE PATIENTS WHO ARE
SURE THAT THIS IS THE RIGHT
OPTION FOR THEM.
SOME OF PROVIDERS HAVE REQUESTED
A DIRECTOR TO DIRECTORY A
REPOSITORY OF NAMES A PROVIDERS
WHO ARE WILLING TO SERVE AS
ATTENDING PHYSICIANS. AND SOME
ORGANIZATIONS HAVE EVEN TRIED TO
CREATE SUCH A REPOSITORY.
HOWEVER MANY OF THEM HAVE ALSO
REPORTED THAT THEY HAVE
RESISTANCE FROM PROVIDERS WHO
DON'T WANT TO BE KNOWN AS THE
AID IN DYING DOCTOR.
SO THIS IS A CONTINUING CONCERN.
AN ADDITIONAL COMPLICATION FOR
KNOWING WHAT TO DO WITH A
PATIENT WHO MAKES A REQUEST TO A
NON PARTICIPATING PHYSICIAN OUR
SYSTEM. IS THAT MANY SYSTEMS WHO
ARE PARTICIPATING OR PROVIDERS
WHO ARE PARTICIPATING ARE
UNWILLING TO TAKE ON PATIENTS
SOLELY FOR THE PURPOSE OF USING
THE END OF LIFE OPTION ACT.
WELL PATIENTS CERTAINLY CAN
STILL RECEIVE HIGH QUALITY
PALLIATIVE CARE IN END OF LIFE
CARE EVEN IN A NON PARTICIPATING
SYSTEM WE NEED MORE INFORMATION
ABOUT HOW TO EFFECTIVELY AND.
SUPPORT PEOPLE IN A TIMELY WAY
WHEN THEY'RE SURE THAT THIS IS
THE RIGHT OPTION FOR THEM.
THE FINAL THING THAT ALL SAY
THAT WE'VE LEARNED FROM OUR
IMPRESSIONS FROM THE SURVEY IS
THAT WHILE MANY ORGANIZATIONS
HAVE CONSIDERED HOW TO CREATE
INTERNAL PROCESSES FOR HANDLING
REQUESTS FOR THE MEDICATIONS.
SEVERAL REPORT THAT THEIR
CHALLENGES WITH COORDINATING
WITH OTHER SETTINGS AND SO THE
TWO SETTINGS WE CARE ABOUT MOST
OFTEN ARE PHARMACY AND HOSPICE
WHICH WE'VE ALREADY TALKED A BIT
ABOUT TODAY. OF FINING
PHARMACIES THAT WILL FILL THE
PRESCRIPTIONS HAS BEEN
CHALLENGING FOR MANY OF THE
ORGANIZATIONS ESPECIALLY A
COMPOUNDING PHARMACY IS NOT
AVAILABLE.
AND ADDITIONALLY MOST
ORGANIZATIONS PERFORMER OR EVEN
REQUIRE THAT THEIR PATIENTS ARE
ENROLLED IN HOSPICE OR
PALLIATIVE CARE BUT THEY REPORT
THAT THEIR LOCAL HOSPICES ARE
UNWILLING OR AND EQUIPPED TO
HANDLE THE REQUEST.
IN ADDITION THERE CHALLENGES IN
TERMS OF PAYMENT MODELS AND
UNDERSTANDING HOW TO DIVIDE UP
THE THE LABOR OF CARING FOR
PEOPLE.
WHEN BOTH HOSPICE AND THE
PRIMARY CARE PROVIDERS ARE STILL
INVOLVED.
PATIENTS ARE MOST SUPPORTED IF
THESE COORDINATION EFFORTS ARE
IMPROVED.
SO IN SOME REGARDLESS OF THE
HEALTH SYSTEM WERE INDIVIDUAL
PROVIDERS OWN POSITION TOWARD
THE LA.
FROM THIS RESEARCH I BELIEVE
THE INFORMATION SHARING AND
SUPPORT FOR COORDINATION WOULD
REALLY IMPROVE. THAT EXPERIENCE
OF PATIENTS WHO ARE ARE ALREADY
PURSUING THIS OPTION AS WELL AS
PATIENTS WHO WOULD NEVER PURSUED
THE AID IN DYING.
THANK YOU VERY MUCH.
THANKS. MADAM CHAIR MEMBERS OF
THE COMMITTEE.
MEAL LINGER ON THE GENERAL
INTERNIST YOU SILLY IN A DIRECT
THE ETHICS CENTER THERE. I'M
HERE TO PRESENT ABOUT HOW YOU
SEE LA HAS IMPLEMENTED BY THE
END OF LIFE OPTION ACT.
BOB THE SYSTEM CONVENE TO
DIVERSE ONE LARGE WORK GROUP
REPRESENTING ALL ASPECTS OF THE
SYSTEM. BUT IN ORDER TO DEVELOP
A POLICY ON HOW BEST TO
IMPLEMENT THE ACT BOMB. THEY
BEGAN WITH A SURVEY OF
PRACTICING POSITIONS THAT
INFORMED THE WORKGROUP
DECISIONS.
BOB AND THE WORK GROUP SUGGESTED
THAT A SYSTEM BE DEVELOPED TO
CREATE AN INFRASTRUCTURE. TO
ENSURE THAT THE ACT REGULATIONS
ROTH FOLLOWED. BOND THAT
PATIENTS MAKE FULLY AUTONOMOUS
COMPLETELY UNENCUMBERED CHOICES
AND THAT THE END OF LIFE
TREATMENT OVERALL IS THE BEST
POSSIBLE CARE. THAT THESE
PATIENTS COULD YET.
I IN ORDER TO ATTAIN THESE
OUTCOMES
THE SYSTEM DIVERSE.
DECIDED THAT THEY NEEDED TO
SPECIALLY TRAINED SOCIAL WORKERS
AND PSYCHOLOGISTS
AND THEY CALL THEMSELVES
CLINICAL CONSULTANTS.
AND THEY'RE MANDATED TO WORK
WITH EACH PATIENT WHO REQUESTS A
AID IN DYING.
AND TO CARRY OUT CYCLE OF.
ASSESSMENTS COUNSELING CYCLE
EDUCATION AN INTERDISCIPLINARY
COMMUNICATION.
I'M THE A WRITTEN THEY DEVELOPED
ORIGINAL MATERIALS.
AND THEY USE THESE TO PROMOTE
CON.
CONVERSATIONS ABOUT MEANING
ABOUT LEGACY.
OTHER CRITICAL CONSULTANTS
ADDRESS PSYCHO SOCIAL DISTRESS
IN PATIENTS AND FAMILIES.
BY THE IS A THE ASSISTANT AND OF
LIFE PLANNING.
ARE THEY MAKE SOME EARLIER
REFERRALS TO HOSPICE AND
PALLIATIVE CARE AT TIMES.
AND THEY ADDRESS THE CHALLENGES
SUCH AS MANAGING PATIENT
EXPECTATIONS.
HOW ABOUT WHAT THE END OF LIFE
OPTION ACT
I MIGHT BE ABLE TO AFFORD THEM?
BUT THE TIMING INVOLVED AND THE
ASSIST ONE CONTINUITY POSITIONS
CAN DECIDE NOT TO PRESCRIBE.
BUT THEY WORK REALLY CLOSELY TO
TO PROVIDE ASSISTANCE AND
SUPPORT TO THE PARTICIPATING
POSSESSIONS.
BUT THE WORKGROUP CRAFTED A
POLICY GUIDING THEM
IMPLEMENTATION THAT INCORPORATES
THE VALUES OF THE HEALTH SYSTEM
AND ALL POINT OUT A COUPLE. HARM
OF HOW THESE VALUES TURN INTO
IMPLEMENTATION APTS.
BUT RECOGNIZING THAT MULTIPLE
PHYSICIANS FREQUENTLY SHARE
RESPONSIBILITY TO CARE FOR
TERMINALLY ILL PATIENT.
BOB CONTRARY TO THE CONCEPTUAL
STATION WITHIN THE ACT ITSELF
USUALLY REQUIRES THE ATTENDING
PHYSICIAN WHO PRESCRIBES THE AID
IN DYING DRUG.
FOLLOW THE PATIENT IN CONTINUITY
BUT RECOGNIZES THAT SHE OR HE
MAY NOT BE THE ONLY PHYSICIAN
WITH ONGOING RESPONSIBILITY FOR
THE TREATMENT OF THE PATIENTS
TERMINAL CONDITION.
BOB RECOGNIZING THAT PATIENT
EDUCATION IS ESSENTIAL FOR
INFORMED DECISION MAKING ABOUT
END OF LIFE CARE THE POLICY
DICTATES THAT ALL REASONABLE
TREATMENT OPTION SHOULD BE
PRESENTED.
BUT THAT POSITIONS MUST AVOID
PRESSURE OR UNINTENDED PROMOTION
OF AID IN DYING. AND ALSO AVOID
ENGENDERING OR AGGRAVATING
CONCERNS.
THAT A PATIENT POSES A BURDEN
ON OTHERS.
BUT IF A PATIENT WITH TERMINAL
ILLNESS REQUEST AID IN DYING
DRUG BECAUSE OF SUFFERING THAT'S
CONTRIBUTED TO BY LACK OF ACCESS
TO MEDICAL CARE OR SOME OTHER
EXTERNAL INFLUENCES.
THOSE FACTORS THOSE FACTORS HAVE
TO BE EXPLORED.
BEFORE ONE CAN PROVIDE.
THE AID IN DYING MEDICATION.
BOB IF A IF OF POSITION IN A
POSITION MAY NEVER ABANDON A
PATIENT FOR MAKING AN AID IN
DYING REQUEST.
BOB RESPECTING THE INDIVIDUAL
VIEWS OF CLINICIANS ON THE MANY
TEAMS THAT CARE FOR HOSPITALIZED
PATIENTS ADMINISTERING AND
INGESTING MADE IN DYING DRUGS
ISN'T PERMITTED. IN THE
INPATIENT SETTING.
BOB AND POSITIONS MUST COMPLETE
A POST AT THE APPROPRIATE TIME.
WHICH ISN'T ALWAYS WHEN THE
REQUEST IS MADE.
BOB FOR A PATIENT INTENDING TO
INGEST THE AND DOCTRINES.
ARE THE POLICY WAS IMPLEMENTED
BY BLANKETING THE HEALTH SYSTEM
OF THE POSITIONS THE STAFF WITH
EDUCATION MENTAL HEALTH
SPECIALISTS WERE WILLING TO
PERFORM THE HEALTH EDUCATION.
BUT WOULD TIP TO PERFORM
CONSULTATION SELF EDUCATED
THEMSELVES AND PRACTICED ON
EXAMPLE CASES.
BY THE HEALTH SYSTEM PHARMACY
COMPOUNDED.
AND AFFORDABLE AID IN DYING
DRUG ACTUALLY CONSIDERABLY
CHEAPER THAN WE HEARD ABOUT THIS
MORNING.
THAT.
IS BASED ON THE EXPERIENCE IN
WASHINGTON AND OREGON THEY
DEVELOP EDUCATIONAL MATERIALS
AND ALSO ARRANGED A MECHANISM TO
RETAIN THE PRESCRIPTIONS AT THE
PHARMACY UNTIL THE REQUIRED.
SO THAT THIS MINIMIZES THE
COMMUNITY STORAGE OR DISPOSAL OF
OF THE DRUGS.
UP OVER THE FIRST EIGHTEEN
MONTHS WE'VE HAD NEARLY A
HUNDRED AND FIFTY PATIENTS MAKE
REQUESTS.
ARE MORE FEMALES THAN MALES ARE
ALMOST ALL WHITE I MEAN AGE
SIXTY SEVEN I EIGHTY SEVEN
PERCENT WITH CANCER.
.
THE PATIENCE OF FEW OF WHOM
WANTED TO DIE BUT
ENTHUSIASTICALLY PARTICIPATED IN
COUNSELING INDIVIDUAL FAMILY
CYCLE EDUCATION. LEGACY BUILDING
SOME WELCOME TO NEW REFERRALS TO
PALLIATIVE CARE HOSPICE CARE. OF
THAT GROUP SEVENTEEN PERCENT
MORE INTELLIGIBLE.
A THIRTY SEVEN PERCENT DIDN'T
COMPLETE THE PROCESS SO SOME NO
LONGER PERCEIVED A NEED. BY
OTHERS HAD DISEASE PROGRESSION
SOME BECAME INCAPABLE.
THEN THIRTY EIGHT PERCENT WERE
PRESCRIBED AID IN DYING DRUG I
EIGHT PERCENT ARE STILL GOING
THROUGH THE PROCESS.
A AMONG THE PATIENTS PRESCRIBE
THE DRUG LITTLE OVER HALF AND
JUST TO THE MEDICATION DYING.
ALL COMFORTABLY.
I SEVEN PATIENTS HAVE
PRESCRIPTIONS WAITING AT THE
PHARMACY RIGHT NOW. BY MORE THAN
FIFTY POSITIONS HAVE
PARTICIPATED IN THE PROCESS.
SO CONCLUSION IMPLEMENTATION OF
THE ACT THAT'S INCREASE THE
PROMINENCE OF CONVERSATIONS
ABOUT THE END ABOUT END OF LIFE
ISSUES AT OUR IN OUR HEALTH
SYSTEM.
BUT SOME OF THE EFFECTS
ACROSS THE STATE. OF WOULD BE
BETTER KNOWN IF WE HAD MORE
DATA.
I'D ADDITIONAL DATA BOTH BEING
COLLECTED IN BETTER TRANSPARENCY
OF THOSE DATA THAT ARE
COLLECTED.
BICU SILLY MECHANISM OF
IMPLEMENTING THIS I THINK
DEMONSTRATES THAT THERE'S MUCH
UNMET NEED FOR EXPERT HANDS ON
SUPPORT. AT THE END OF LIFE FOR
WHICH RESOURCES ARE NEEDED AS
YOU CAN TELL THE AMOUNT OF
RESOURCES THAT NEEDS.
TO GO INTO A PROCESS OF THIS
SORT. HIS CREW IS CONSIDERABLE.
BUT PERHAPS MOST IMPORTANTLY
THIS LEVEL OF SUPPORT SHOULD NOT
BE EXCLUSIVELY AVAIL AVAILABLE
TO PEOPLE REQUESTING A DYING.
THANK YOU VERY MUCH.
THANK YOU MADAM CHAIRMAN THANK
YOU FOR READING.
MY NAME IS MELISSA STERN. I AM
THE MANAGING DIRECTOR FOR THE
PERMANENTE MEDICAL GROUP AND
NORTHERN CALIFORNIA FOR
SUPPORTIVE CARE SERVICES WHICH
PRESSES PALLIATIVE CARE AND
ADVANCE CARE PLANNING AS WELL
AS.
I HAVE OVERSIGHT FOR THE DESIGN
AND IMPLEMENTATION OF OUR END OF
LIFE OPTION PROGRAM.
AND I REPRESENTED A GROUP OF
PEOPLE COMMITTEE PEOPLE WHOSE
WORK BEGAN IMMEDIATELY AFTER
GOVERNOR BROWN SIGNED THE LINE
TO.
ACT AND WE CONVENED MUCH AS I'M
A COLLEAGUES DEAD A BROAD GROUP
OF STAKEHOLDERS FROM ACROSS THE
ORGANIZATION AS YOU MIGHT
IMAGINE. TO DESIGN AND IMPLEMENT
A PROGRAM THAT WE THOUGHT WOULD
BE AS COMPREHENSIVE THOUGHTFUL
AND PATIENT CENTERED AS
POSSIBLE.
AND NOT INCLUDED MANY OF THE
SAME FOLKS ONCOLOGY PRIMARY CARE
MEDICINE AS WELL AS MEDICAL
ETHICS ATTORNEYS PHARMACY
BENEFITS AND THE LIKE TO CREATE
BOTH A POLICY AS WELL AS
PROPHECIES AND PROGRAMS TO
SUPPORT THE IMPLEMENTATION.
ARE.
OUR COMMITTEE SAID AS OUR
NORTHSTAR AND IDEA THAT NO
PATIENT WHATEVER AVAIL
THEMSELVES OF THIS LAW FOR LACK
OF ACCESS TO HIGH QUALITY
PALLIATIVE CARE HOSPICE
SERVICES.
AND AS WE WENT ABOUT OUR DESIGN
THIS WAS THE THING WE REMINDED
OURSELVES UP AND ASKED ALL ALONG
IF WHAT WE WERE SETTING FORTH
WOULD SERVE BACK GOAL. AND I
THINK WHAT WE'RE MOST PROUD OF
TODAY IS THAT TIME WE'VE BEEN
ABLE TO HONOR THAT ASPIRATION SO
LIKE.
LIKE UC DAVIS MENTIONED.
NINETY NINE PERCENT OF OUR
MEMBERS WHO'VE WHO'VE GONE
THROUGH THE END OF LIFE OPTION
PROGRAM AT KAISER HAVE.
EITHER BEEN TREATED BY
SPECIALTY PALETTE OF CARE TEAMS
HAVE BEEN ENROLLED IN HOSPICE
PROGRAMS OR BOTH.
AND WE FIND THAT TO BE VERY
IMPORTANT.
I'M.
WHEN WE BEGAN WE ENDEAVOR TO
LEARN AS MUCH ABOUT THE LAW AS
POSSIBLE AND AS EARLIER SPEAKERS
SAID WE SET OUT TO LEARN FROM.
OUR BECAUSE A PERMANENT A
COLLEAGUES IN OREGON WHO HAD
MORE THAN EIGHTEEN YEARS
EXPERIENCE WITH THEIR DEATH WITH
DIGNITY LAW.
AND BASED ON THEIR ADVICE LIKE
THE OTHER SYSTEMS WE CREATED A
NEW POSITION WHICH WE CALLED THE
END OF LIFE OPTION PATIENT CO
ORDINATOR. AND SIMILARLY TO
OTHER SYSTEMS THEIR ROLE AND
RESPONSIBILITIES TO FOLD.
TO ASSIST THE PATIENTS AND THEIR
FAMILIES NAVIGATE THIS MULTI
STEP PROCESS THAT YOU SET OUT IN
THE LONG.
AND LIKE OTHERS THIS INCLUDES
ASSISTING PATIENTS WHEN THEIR
OWN PHYSICIANS OPT OUT OF
PARTICIPATION TO IDENTIFY OTHERS
WHO WILL SUPPORT THEM.
AND THEY ALSO SUPPORT THE
PARTICIPATING PHYSICIANS SO THAT
THOSE POSITIONS ARE WELL
PREPARED TO.
FOLLOWED THE SPECIFIC
REQUIREMENTS OF THE LAW TO AVAIL
THEMSELVES OF DOCUMENTATION
TEMPLATES AND THE LIKE.
AND WHAT WE HAVE FOUND IS THAT
OUR MEMBERS THEIR FAMILIES AND
OUR PHYSICIANS ARE WILDLY.
APPRECIATIVE OF THE SUPPORT
THAT THEY GET FROM THOSE
COORDINATORS AND THESE ARE
PEOPLE WHO WHOSE FULL TIME JOB
IT IS TO DO THIS WORK.
.
IN OUR DESIGN WE ALSO SOUGHT THE
ADVICE OF PATIENTS AND THEIR
FAMILIES WHO WERE INTERESTED IN
THIS WORK.
AND WE WANTED TO LEARN WHAT
WOULD BE IMPORTANT OF THEM AND I
I SEE THAT DANTE HAS HAS BEEN IN
THE ROOM AND I WON IT KNOWLEDGE
THAT. HE SPENT SOMETIME WITH US
GIVING US THAT'S THAT SENSE OF
WHAT WOULD BE IMPORTANT.
ONE OF THE THINGS THAT WE
CREATED.
IN RESPONSE TO WHAT WE HEARD AS
THE IS A PROGRAM GUIDE I'VE
BROUGHT COPIES THAT I CAN MAKE
AVAILABLE TO ALL OF YOU. AND THE
PURPOSE OF THE GUIDE US TO DO
SOME OF THE EDUCATION THAT
WASN'T MENTIONED BEING
NECESSARY.
IT PROVIDES ANSWERS TO
FREQUENTLY ASKED QUESTIONS IT
OVER VIEWS THE PROCESS NOT JUST
THE STEPS THAT ARE OUTLINED IN
THE LAW BUT ACTUALLY ALL THAT IS
REQUIRED TO GO FROM AN INITIAL
INQUIRY TO HAVING A PRESCRIPTION
AT YOUR. AT YOUR HOME.
AND REALLY DETAILS WHAT IT WHAT
CAN BE EXPECTED EACH STEP ALONG
THE WAY.
.
THE OTHER THING AS OTHERS DID TO
OVERSEE AND TO DEVELOP THE
PROGRAM ONGOING WE CREATED A
GOVERNANCE STRUCTURE FOR US THAT
INCLUDES. MEDICAL DIRECTORS AND
ADMINISTRATIVE LEADERS BOTH AT A
REGIONAL LEVEL AS WELL AT EACH
HAVE OUR MEDICAL CENTERS AND
THOSE ARE PARTNERED WITH
PHYSICIAN MENTORS. WHO HAD
FORMALLY?
AGREED TO SERVE IN A MENTORSHIP
ROLE TO GET MORE EDUCATION SO
THAT THEY CAN SUPPORT OTHERS WHO
MAY. HAVE CONCERNS ABOUT WHETHER
TO PARTICIPATE THAT WAS
MENTIONED SOME PEOPLE MAY
PARTICIPATE THEY'RE NOT SURE AND
THE MENTORS CONSERVANCY PORT OF
THOSE PEOPLE.
THAT STRUCTURE ALLOWS US.
THE INFRASTRUCTURE FOR AN
ONGOING.
PROGRAM OF PROCESS IMPROVEMENT
AND AS OTHERS MENTIONED WE
CONSISTENTLY REVIEW OUR CASES TO
IDENTIFY AND ADDRESS OPERATIONAL
CHALLENGES AND OPPORTUNITIES FOR
IMPROVEMENT.
IMPORTANTLY WE ALSO REGULARLY
CONDUCT I'M DE BRIEFS WHERE
PHYSICIANS AND STAFF WHO ARE
INVOLVED IN A PATIENT'S CARE.
CN DISCUSS THE EMOTIONAL IMPACT
ON THE CASE FOR THEM AND TO GIVE
AND RECEIVE SUPPORT TO ONE
ANOTHER.
I'M THIS IS ALSO OFTEN
INCORPORATED INTO THE SCHWARTZ
ROUNDS THAT MANY OF OUR MEDICAL
CENTERS DO.
.
AND.
FINALLY I WANNA SAY AS OTHERS
HAVE THAT I'VE SEEN VERY
POSITIVE RIPPLE A FAX
FROM THE LAW TO THE BROADER
ISSUES OF END OF LIFE HEALTH
CARE. AND CALIFORNIANS CERTAINLY
KAISER PERMANENTE A.
I THINK IT MASON NATHAN
MENTIONED THE MEDIA ATTENTION
FROM THE PASSAGE AND ENACTMENT
OF THE LAW REALLY BROUGHT THIS
TO THE FORE AND. IN MY WORK
ESPECIALLY IN ADVANCE CARE
PLANNING WORK WE SAW MORE
MEMBERS COMING FORWARD AND
ASKING IF THEY COULD HAVE
ADVANCE CARE PLANNING
CONVERSATIONS PEOPLE WHO WERE
GAINING MORE CLARITY ON THEIR
OWN VALUES AND BELIEFS FOR AND
OF LIFE THERE. AND THEY WANTED
TO MAKE THAT KNOWN TO US.
THAT THE SECOND HOW TO DO ALSO
WITH A PHYSICIAN AND PROVIDER
EDUCATION.
JUST AS NAY.
PERTINENT ENOUGH FOR PEOPLE TO
RECOGNIZE THAT THEY NEEDED SOME
SOME ADDITIONAL EDUCATION AND TO
BEAT HIM TO REACH OUT FOR IT. WE
PROVIDED BOTH DIDACTIC EDUCATION
AND.
COMMUNICATION SKILLS EDUCATION
WE DEVELOPED AN EIGHT HOUR.
COMMUNICATION PROCESS AND AND
TRAINING WITH VITAL TALK WHO ARE
KNOWN NATIONALLY AS EXPERTS IN
PHYSICIAN COMMUNICATION AROUND
SERIOUS ILLNESS. AND BOTH IN THE
DIDACTIC SESSIONS AS WELL AS IN
THE COMMUNICATION WORKSHOPS WE
HAD.
RECORD NUMBERS OF PHYSICIANS
ATTENDING AND SOLD OUT. KIND OF
ATTENDANCE SO WE WE FIND THAT
QUITE ENCOURAGING AND SO I WOULD
SAY THAT FROM MY PERSPECTIVE.
THE THOSE REBEL A FAX OF THE LAW
HAVE HAVE BEEN VERY VERY
POSITIVE GENERALLY SPEAKING FOR.
FOR CALIFORNIANS TO HAVE CARE AT
THE END OF LIFE THAT THAT ALIGNS
WITH THEIR OWN VALUES AND
BELIEFS WHICH IS. OUR PRIORITY.
LOOKING.
THANK YOU NAY AND AGAIN I THINK
THAT'S WHAT ALL OF US WERE
HOPING FOR WHEN WE PUT THIS INTO
EFFECT THAT IT WOULD JUST
INCREASE THE AMOUNT OF
CONVERSATIONS.
BOTH INDIVIDUALS AND PROVIDERS
WITH I OR HAVING TALKING ABOUT
END OF LIFE. UNTIL I HEARD
PLAGUED THE DESIRE FOR MORE DATA
WHAT WHAT KINDS OF MORE DATA AND
AND HOW WOULD THAT AND IN THE
TRANSPARENCY THAT CAN YOU TALK A
LITTLE ABOUT THAT.
SURE SO IN TERMS OF MORE DATA.
ONE OF THE THINGS THAT WOULD BE
HELPFUL FOR US IS MORE DATA
ABOUT THE RANGE OF.
APPROACHES THAT THAT
SYSTEMS ARE TAKING WHICH IS PART
OF WHAT WE'RE DOING IN THIS MORE
INFORMATION SHARING MORE
INFORMATION SHARING IN ACROSS
SYSTEMS.
ACROSS DIFFERENT KINDS OF
SETTINGS BUT I THINK DOCTOR WHEN
THERE WAS TALKING SPECIFICALLY
ABOUT MORE PATIENT.
RIGHT SO THEY'RE I THINK THERE'S
TWO AREAS WHERE MORE DATA COULD
BE HELPFUL FIRST OF ALL THEIR
DATA BEING COLLECTED PROPPING
RELEASED.
THOSE DATA ESPECIALLY WE HEARD
THIS MORNING THAT WE'RE GOING TO
BE DESTROYED AFTER THREE YEARS.
I'D BE REALLY GREAT TO GET ALL
THOSE DATA PUBLISHED.
BUT IN ADDITION WE'RE NOT
HEARING ABOUT REQUESTS.
FOR THE FIRST AID IN DYING ACT
AND ALL WE KNOW ABOUT OUR
PRESCRIPTIONS WRITTEN.
THERE OUGHT TO BE A WAY FOR US
TO COLLECT DATA SIMILAR TO WHAT
I PRESENTED TO YOU HERE.
BOB THAT IS MORE BROADLY
REPRESENTATIVE OF WHAT'S
HAPPENING WITHIN THE STATE BOMB.
AND THAT WOULD ALLOW US TO BEGIN
TO UNDERSTAND WHERE THERE ARE
AREAS WHERE PERHAPS ACCESS IS IS
COMPROMISED.
PETA MAY ACTUALLY LA WAS TO
UNDERSTAND MANY OTHER THINGS.
SUCH AS AREAS WHERE MORE
REQUESTS.
OR BEING SEEN THAT MIGHT
OTHERWISE BE EXPECTED.
THANK YOU QUESTION THE
HEARTENING BECAUSE AND END OF
LIFE CONVERSATIONS AMONG
FAMILIES.
WITH PROVIDERS.
INTO ACCESS OF FULL RANGE OF
END OF LIFE OPTIONS AND.
YOUR MACHINE INDIVIDUAL ON SHARE
TESTIMONY REALLY CONFIRMS THAT.
NOW I HAD IT QUESTION FOR DOCTOR
FAMINE IN MAYBE FOR THE OTHER
INSTITUTIONS.
IT SEEMS LIKE THE UC MED CENTER
SIR RELATIVELY AUTONOMOUS AND
WANTING IF THERE'S.
ARE THEIR ANY MECHANISMS WITHIN
THE UC MEDICAL DO RESIDENTS ANY
TRAINING IN
THEIR RESIDENCY TRAINING AT. UC
DAVIS MEANT CENTER.
YEAH I'LL TAKE THE SECOND A
QUESTION
FIRST AT YOU SEE DO YOU
THE AUTONOMY OF EACH OF THE UC
HOSPITALS EACH OF US.
MY UNDERSTANDING IS THAT EACH
INSTITUTION MADE AND WHICH ARE
INCLUDING
ONES LIKE THIS IN WHICH.
PROVIDERS ARE WITH AN
INSTITUTIONAL PERSPECTIVE.
FROM DR WENGER FROM MELISSA
ABOUT THE THE UCLA EXPERIENCE IN
THE KAISER EXPERIENCE WE MAY
HEAR ACTUALLY.
FROM.
COLLABORATOR LEVEL LEVEL
DOCTOR KOENIG I THINK IS ON THE.
ON THE SCHEDULE CORRECT THANK
YOU IN THE ENTRY.
CAN YOU OFFER AN ESTIMATE OF HOW
MANY.
YOU WOULD DESCRIBE AS
PARTICIPATING. PHYSICIANS UC
DAVIS ON HOW MANY PARTICIPATING
PHYSICIANS ARE WE HAD ABOUT.
AT THIS POINT AND SO THAT'S VERY
LOW RATES OF
PARTICIPATION AMONG CANCER
PROVIDERS.
IN THE ROLE OF THE PARTICIPANT
WE HAD ABOUT THIRTY DIFFERENT
DOCTORS AND.
THERE'S SO MUCH.
MORE DIVERSITY IN TERMS OF
PROFESSIONAL BACKGROUND THAT'S
REPRESENTED IN THAT GROUP. AND
WE'VE HAD ABOUT SIX DIFFERENT
PSYCHIATRISTS WHO PROVIDED.
THE MENTAL HEALTH SPECIALIST
ASSESSMENT.
THE YOU AND. I HEARD
APPROXIMATELY FIFTY PHYSICIANS
AT UCLA SENT.
HAVE PARTICIPATED NAM AYE THANK
YOU SHARED THE NUMBER FIFTY.
THAT WOULD DEFINITELY BE A LOWER
FOUND NO HAN YET THING SAID MORE
FIFTY OR MORE.
LINLINK KAISER NORTHERN
CALIFORNIA'S THAT YEAR LATELY
WITH MY DAILY WAY CAN ACTUALLY I
DON'T HAVE THE NUMBERS FOR YOU
BUT WHAT I WILL SAY IS THAT WHEN
PHYSICIANS MAKE A REFERRAL TO
THE PROGRAM. WE ASK THEM IN WHAT
WAY ARE THEY WILLING TO
PARTICIPATE ARE THEY WILLING TO
BE AN ATTENDING PHYSICIAN AT A
CONSULTING PHYSICIAN EITHER DO
THEY WOULD THEY BE WILLING TO
PARTICIPATE WITH MENTORSHIP. AND
WHAT I WOULD SAY IS THAT THE
VAST MAJORITY OF PHYSICIANS ARE
WILLING TO PARTICIPATE IN SOME
FASHION.
IN IN THOSE VARIOUS AREAS I
DON'T HAVE THE NUMBERS THINK
YOU.
IN ONE OF THE CHALLENGES I THINK
WE HAVE IS THAT.
YOU'RE ALL REPRESENTING
PARTICIPATING INSTITUTIONS.
AND AS WE ALL UNDERSTAND THE LAW
ALLOWS AN INSTITUTION TO OPT
OUT.
IT DOESN'T REQUIRE ANY POSITION
TO PARTICIPATE WHO DOESN'T WANT
TO.
SOME INSTITUTIONS BECAUSE OF
CORE BELIEFS.
NAME NOT BE INCLINED TO HELP A
PATIENT.
FIND A.
A PHYSICIAN WHO WOULD BE ABLE
TO.
FACILITATE THAT NARROW THE SCOPE
OF OUR HEARING TODAY BUT IT IS.
A BROADER QUESTION OF ACCESS.
IN
I THINK I'M.
.
IN IN THE SHARING OF INFORMATION
AMONG INSTITUTIONS ó I THINK
DOCTOR WHEN YOU RAISE THE ISSUE.
OF SOME RETICENCE OF
PARTICIPATING POSITIONS TO BE
LISTED IN SOME KIND OF A
REPOSITORY. I THINK THIS IS
SOMETHING THAT THOSE OF US
THEY'RE TRYING TO MOVE FORWARD
WITH IMPLEMENTATION.
.
WE HAVE TRIED TO FIGURE OUT HOW
COULD YOU CREATE.
A RIPS OPOSITORES IF OF NAMES
THAT MAYBE HAS SOME PROTECTIONS
FOR CONFIDENTIALITY OR SOME
GATEWAYS ON HAVE YOU GIVEN ANY
FURTHER THOUGHT ANY OF YOU TO.
NO INFORMATION ABOUT.
PARTICIPATING PHYSICIANS MIGHT
BEACH MIGHT BE SHARED OR MADE
AVAILABLE TO PATIENTS OR OTHER
POSITIONS. WITHOUT COMPROMISING
A DESIRE FOR CONFIDENTIALITY.
I MIGHT.
.
I MIGHT POINT OUT THAT DATES
PROBABLY DIFFERENT WITHIN
SYSTEMS THEN. OUTSIDE OF
SYSTEMS.
I WITHIN SYSTEMS WE'RE SEEING
AND VERY INTERESTING.
APPROACH.
.
DEVELOPMENT
OVERTIME WHERE I'M NOT MANY
PEOPLE MIGHT THINK THAT THE
OPPOSITION DECISION TO
PARTICIPATE ARE UP NOW
PARTICIPATE. IS SOMETHING THAT
IS A STRONGLY HELD BELIEF FOR
SOME IT IS.
BUT FOR THE VAST MAJORITY WHAT
WE'RE SAYING IS THAT IT'S
DEPENDENTLARGELY ON THE
PHYSICIAN PATIENT RELATIONSIP.
AND THAT POSITIONS ARE WILLING
TO PRESCRIBE UNDER SOME
CIRCUMSTANCES BUT NOT UNDER
OTHERS.
AND IN FACT WITHIN A SYSTEM
WHERE THERE IS COMFORT IN THEIR
SUPPORT WE'RE SEEING MORE AND
MORE PHYSICIANS BEING WILLING TO
PRESCRIBE PERHAPS NOT AT THE
VERY BEGINNING. AND NOW EIGHTEEN
MONTHS AND THEY ARE.
BOB AND WE'RE ALSO SEEING THAT
THEY'RE COORDINATING AMONG
THEMSELVES WITHIN THEIR
SPECIALTY.
SO FOR INSTANCE MANY OF OUR OWN
ONCOLOGISTS ARE PRESCRIBING NOW
THEY WEREN'T ORIGINALLY.
AND THEY.
HAVE ARRANGED TO BE ABLE TO
CONSULT FOR EACH OTHER TO MAKE
SURE THAT PATIENTS ARE ARE ABLE
TO RECEIVE THAT THE.
THE AND OF LIFE OPTION ACT.
IF IN FACT IT'S APPROPRIATE.
IN.
IT EVOLVED DESCRIBED
INSTITUTIONAL STRUCTURES THAT
PROVIDE SUPPORT IN MULTI
DISCIPLINARY COOPERATION IN.
CLEARLY A PHYSICIAN WHO'S MAYBE.
IN A SMALLER PRACTICE IN THE
MORE REMOTE AREA AND DOESN'T
HAVE THE RESOURCES.
IS GONNA BE MORE RELUCTANT OR
SOMEBODY WITHIN YOUR SYSTEMS IS
GONNA HAVE THAT THAT SUPPORT
NETWORK AVAILABLE TO THEM.
MANAGERS TO FINAL QUESTION.
THE DATA SHOWS
MOST OF THE PEOPLE ACCESSING. IN
THE EARLY STAGES OF
IMPLEMENTATION.
HAVE BEEN QUITE SOME OF
SUGGESTED ANECDOTALLY.
.
HIGHLY EDUCATED.
GOOD SELF ADVOCATES SATURATE
CENTER.
NAM.
ANY THOUGHTS ON HOW WE CAN
BETTER ENGAGE.
THOSE SERVING UNDERSERVED
POPULATIONS MAYBE NON ENGLISH
SPEAKING POPULATIONS AGAIN NOT
TO.
PROSELYTIZE THE YOU SERVE BUT
MAKING SURE EQUAL ACCESS
FOR THOSE.
WHO WOULD BE A CANDIDATE?
COULD ALSO HAVE EQUAL ACCESS.
IN MAY THAT CENTER FOR QUESTION
TO THIS PANEL THAT MAYBE MADAM
CHAIR I THINK IT IS ONE OF OUR
CHALLENGES OF HOW.
OR WE HAVE DISPARITIES HAVE
ACCESS ON MANY LEVELS.
WE'RE ALSO GONNA DISPARITY OF
ACCESS TO THIS FROM FORGIVE ME I
I DON'T.
.
I DON'T HAVE THE ANSWER THAT
QUESTION BUT I WOULD JUST MAKE
AN OBSERVATION THAT THAT'S NOT A
PROBLEM THAT'S UNIQUE TO THE END
OF LIFE OPTION ACT.
THAT'S A IF YOU'VE DESCRIBED A
PROBLEM WITH.
THE WAY HOW CSUS ARE HEALTH
SYSTEMS ARE ORGANIZED.
AND.
.
PARTICULARLY WITH RESPECT TO
ACCESS TO TIE QUALITY PALETTE OF
CARE.
YEAH.
I WOULD HAVE TUCKED CHAIRMAN
THAT TIME I HAVE GONE TO A
NUMBER OF.
OF PLACES TO.
SPEAK ABOUT HOW ONE WOULD
IMPLEMENT.
THE END OF LIFE OPTION OUT IN
THESE ARE LARGELY.
ABOUT COUNTY FUNDED FACILITIES.
AND WHAT WHAT WE FIND IS THAT IF
THERE ISN'T ADEQUATE PALLIATIVE
CARE.
THE DEMAND FOR THE END OF LIFE
OPTION ACT
IS NONEXISTENT.
THAT IN FACT ONE NEEDS TO HAVE
AN ADEQUATE PALLIATIVE
STRUCTURE.
TO EVEN CONSIDER AS AN
INSTITUTION OR IS A SYSTEM.
PUTTING RESOURCES.
AND TO AID IN DYING.
THANK YOU AND FOUND QUESTION
FROM DOT QUIRK.
YES I JUST WANT TO THANK
STANFORD UC SAN DIEGO UC DAVIS
UCLA AND KAISER NORTH. FOR THEIR
CAREFUL INCONSIDERATE
IMPLEMENTATION OF THE LAW THANK
YOU.
YEAH AND I WOULD I WOULD SAY WE
DID REACH OUT TO INVITE SYSTEM
TO WHO WERE NOT PARTICIPATING.
DISTURBED AND WE HEAR THEIR
PERSPECTIVE IN HERE. BUT THEY
FOR WHATEVER REASON HAVE TO
DECLINE.
BUT WE THANK YOU ALL VERY MUCH
BECAUSE CLEARLY YOU HAVE.
BEEN INCREDIBLY THOUGHTFUL
INTENTIONAL IN IN THIS
IMPLEMENTATION AND I AND I THINK
WHAT YOU FIND
HOME. DR MISTER MINDS QUESTION
IS IS IT CONSISTENT WITH WHAT WE
SEE IN HEALTH CARE A WE WE NEED
BETTER MORE. ROBUST HEALTH CARE
ESPECIALLY AROUND PALETTE OF
ISSUES AND END OF LIFE.
BUT THANK YOU ALL VERY MUCH IT
AND GUYS DOES EVERYBODY HAVE
WRITTEN.
DOCUMENTS THAT YOU GOT YOUR
PATIENTS NOT ASSERTED THAT YOU
BROUGHT FOR US.
WE ARE GOING TO PLAY OUT THE
PATH.
JUST WOULD LIKE TO SEE THANK
YOU.
THANK YOU VERY MUCH FOR YOUR FOR
YOUR WORK AND WE KNOW IT'S NOT
EASY IMPLEMENTING BRAND NEW LAWS
LIKE THIS AND AND WE PASSED THEM
IN YOU EMPLOYMENT AND SO WE
THANK YOU FOR YOUR.
FOR ALL YOUR WORK.
A A NEXT UP THE HOSPICE
EXPERIENCE
.
GOOD MORNING AND WELCOME MORE
AND MORE IN A FEW HEIGHT AS WE
HAVE FLAT ILANA.
THAT TO LOCK IT TAKES ABOUT
FIFTEEN DAY OKAY I CAN'T THINK
YOU THE OLDER THAT YOU SAY IT
EVERY TIME THEN. SEASON
HEALTHCARE OF MANAGEMENT WE HAVE
MK NELSON DIRECTOR SPIRITUAL
CARROT MISSION HOSPICE AND LIZ
SUMNER TRIAGE MANAGER AT
ELIZABETH HOSPICE.
WELL GOOD MORNING EVERY MORNING.
AND I'M WILLING TO SETTLE OF SKI
AS YOU MENTIONED I'M WITH
SEASONS HEALTH CARE MANAGEMENT
WE ARE THE UMBRELLA ORGANIZATION
FOR SEASONS HOSPICE AND
PALLIATIVE CARE.
WE OPERATE IN NINETEEN STATES
THREE OF WHICH CURRENTLY HAVE AN
END OF LIFE OPTIONS ACTOR DEATH
WITH DIGNITY ALONG PLACE.
SIX OF THOSE SITES ARE HERE IN
CALIFORNIA.
I'M GONNA TALK A LITTLE BIT
ABOUTHOW WE STARTED
IMPLEMENTING.
.
FOR OUR OWN STAFF
SO LOOKING AT WHAT DID WE DO
AROUND PROTOCOLS WHICH WE DID
DEVELOP. A WHAT DID WE DO AROUND
EDUCATION AND SUPPORT OF THE
STAFF AND THEN SOME OF THE
CHALLENGES THAT WE ARE FINDING
OURSELVES FACED WITH ON A DAY TO
DAY BASIS AND ALSO INCREASING.
SO ONE OF THE THINGS I THINK IS
REALLY ON IMPERATIVE TALK ALL OF
THE WORK THAT WE'RE ALL DOING
IS.
AND FOR US IS WE USE THAT IDEA
OF PATIENT EXPERIENCE IT'S EVEN
IN MY OWN TITLE AS THE
DEPARTMENT THAT OVERSEES. ALL
THE PSYCHOSOCIAL DISCIPLINES UP
QUALITY AND EDUCATION AT OUR
SITE AFFECTS.
AND SO ONE OF THE THINGS WE DID
ONCE THE.
.
ACT WAS PASSED BEFORE THE
IMPLEMENTATION WE ACTUALLY.
UPDATED PROTOCOLS WE DO HAVE IT
SITES IN OREGON SO WE UPDATED
PROTOCOLS.
SURROUNDING THAT ACT
AND AND CALLED PHYSICIAN AID IN
DYING.
AND REALLY THERE ARE A FEW
THINGS THAT WE THINK ARE KIND OF
UNIQUE TO THE WAY THAT WE DID
THIS PROTOCOL SO ONE OF THEM IS.
AT EVERY PATIENT REQUEST I'M
SIMILAR TO WHAT DOCTOR FUHRMAN
WAS TALKING ABOUT HAVING A
PATIENT ADVOCATE I'M THAT
INDIVIDUAL FOR THE CALIFORNIA
SITES ARE NATIONAL DIRECTORS OF
SUPPORTIVE CARE PATIENT
EXPERIENCE. AND OUR REGIONAL
TEAMS ARE WELL VERSED IN THE LAW
AND PROVIDING THAT EDUCATION ON
A REGULAR BASIS.
I'M OUR PHYSICIANS DO HAVE THE
OPTION TO PARTICIPATE AS THE
ATTENDING AS DEFINED BY THE ACT.
AND THEY CAN ALSO PARTICIPATE AS
CONSULTING THEY THEY MAY CHOOSE
TO OPT OUT BUT IT IS WRITTEN
INTO OUR PROTOCOL THAT THEY MAY
PARTICIPATE.
I STAFF MAY BE PRESENT AT THE
TIME OF INGESTION WHICH I THINK
FOR SOME SITES IS RATHER UNIQUE
AS LONG AS WE HAVE TO STAFF
MEMBERS PRESENT AND. PART OF THE
THEORY BEHIND THAT WAS.
COURSE THE LEGAL ASPECTS
SURROUNDING IT BUT ALSO THE IDEA
AROUND THAN BEING ABLE TO DIVIDE
AND CONQUER SO PATIENTS FAMILY
POTENTIALLY EACH OTHER OR OTHER.
HEALTH CARE PROVIDERS THAT WE
ARE COLLABORATING WITH.
THEN WE LOOKED AT REALLY THE
ROLLOUT IN EDUCATION AND WE
STARTED THAT AGAIN IN ADVANCE OF
THE.
IMPLEMENTATION OF THE ACT AND
THE INITIAL I ROLLED OUT TO THAT
WE DID WAS A LIVE WEAPON ARE
WHICH WE RECORDED I'VE HAD A.
EXTENSIVE Q. AND A SESSION.
WHICH IN IN A FACTOR THEN CAME
BACK TO SOME UPDATES ON OUR
PROTOCOL TO REALLY EXPLAIN TO
THE STAFF SOME OF THE. ASPECTS
THAT THEY HIDE IN ORDER TO MOVE
FORWARD.
WE REALLY WANTED TO ENCOURAGE
AND EMPOWER OUR STAFF MEMBERS TO
REFLECT ON THEIR OWN BELIEF
SYSTEMS.
AND CHIU STYLE.
AS THEY RELATE TO THE LAW
INVITING THEM TO SHARE THEIR
WILLINGNESS TO PARTICIPATE OR
THEIR CONVICTION NOT TO WITH
THEIR THEIR IMMEDIATE LEADERSHIP
TEAMS. AS A RESULT OF THAT WE'VE
ALSO AMENDED ARE ON CALL
STRUCTURE FOR BOTH AND WHICH
INCLUDES ALL OF ART DISCIPLINES
I'M NURSING. MEDICAL ARE
ADMINISTRATORS ON CALL AND I
DON'T LAWLER PSYCHOSOCIAL
DISCIPLINES.
IN TERMS OF REALLY SUPPORTING
BOTH THE PATIENT CHOICE AND THE
STUFF CHOICE AND DECISION.
AS WE HAVE LEARNED MORE AND WE
HAVE DONE LIVE.
LIVE EDUCATION STRUCTURES EVERY
TWO MONTHS FOR EVERYONE OF THOSE
SIX CALIFORNIA SITES AND WE'VE
TAKEN VARIED. CREATIVE
APPROACHES AROUND HOW DO THESE
TRAINING SO SOME OF THE MOST
RECENT ONES INCLUDED SOME CASE
STUDIES I'M FOCUSING ON THE IDF
CHOICE CONTROL ON HOW TO HAVE
THE CONVERSATION A FACILITATOR.
BE THAT.
.
THEY ARE THAT WITNESS AND BE OF
THE SILENT OBSERVER OF THIS. AND
WE DID SOME JEOPARDY GAMES WHICH
IS ONGOING AMONG THE SITES AND
SOME TRUE AND FALSE POP QUIZZES
SOMETIMES I'LL JUST SHOW UP AT
RANDOM AND AND ENGAGE IN THIS
DISCUSSION DURING IDG.
AND A LOT OF EXPERIENTIAL ROLE
PLAYS AGAIN TO REALLY HELP THEM.
I.
BUT OR EMPLOYED THESE.
TO REALLY HELP THEM ENGAGE IN
FACILITATING A DISCUSSION THAT
HONORS WHO THEY ARE AS THE
CLINICIAN AS WELL.
WE FEEL THAT THEY'RE REALLY MUCH
BETTER EQUIPPED THAN THEY WERE
WHEN WE FIRST STARTED THIS
PROCESS WERE NOTICING MORE AND
MORE OF OUR STAFF.
WANTING TO PARTICIPATE AND BE
PRESENT AND SOME WHO HAD.
ORIGINALLY SAID THAT THEY DID
NOT WANT TO PARTICIPATE AT ALL
AND BE AT THE BEDSIDE WITH OUR
PATIENTS AND FAMILIES. HAVE NOW
BEGUN TO MAKE THE CHOICE TO BE
PRESENT FOR CERTAIN PATIENTS AND
FAMILIES. AND WE DO HAVE ABOUT
FIFTY PERCENT OF OUR STAFF THAT
IS AT THE BEDSIDE.
WE'VE NOTICED AND THREE OF OUR
SITES
THAT.
WE HAVE WHAT WE CALL A CHAMPION
OF THIS PROGRAM LOCALLY. AND SO
AT THREE OF THE SITES CURRENTLY
THEY'RE TAKING INITIATIVES TO
PROVIDE EDUCATION TO THE LARGER
HEALTH SYSTEMS THAT WE WORK
WITH.
ON THE HOSPITALS THAT ARE
PARTICIPATING THE AD ASSISTED
LIVING FACILITIES THE SKILLED
NURSING FACILITIES TO REALLY
HELP FRAME THE IDEA OF PATIENT
CHOICE.
THEN TWENTY SEVENTEEN THESE ARE
VERY EARLY NUMBERS BUT I'M ARE
SIX CALIFORNIA PROGRAMS HAD
AROUND TWO DOZEN REQUESTS.
AND WE'VE HAD EIGHT COMPLETED
AND TWO ARE SCHEDULED FOR THIS
WEEK.
AND LIKE OTHERS ARE CHALLENGES
ARE VERY SIMILAR THERE ARE ABOUT
FIVE.
AND.
THE ONE BIG ONE I THINK FOR ALL
HOSPICE PROVIDERS IS THE THE
LATE REFERRAL THAT WE RECEIVE.
AND SO THAT'S THAT'S BEEN ONE
BECAUSE NOT HAVING THAT TIME
FRAME RELIEVED MAKES THIS VERY
BURDENSOME AND UNLIKELY FOR SOME
OF OUR PATIENTS PARTICIPATE.
AND SOME HAVE BEEN DROPPED FROM
THEIR PREVIOUS PROVIDERS.
EVEN AFTER THEY WERE ELIGIBLE
FOR THE BENEFIT AND SO THEY COME
TO US AGAIN RATHER LATE.
WE DO CONTINUE NOTICE.
.
SLOWLY DECREASING FRED I'M
CONCERNED FROM THE STOCK.
AS WHERE WE REALLY STARTED RIGHT
TO STOP THINKING OH MY GOSH I'M
GOING TO MISS A STEP.
AND WHAT DOES THAT MEAN TO WORKS
MY OWN LICENSE BUT WE'RE
NOTICING NOT DECREASING WITH THE
MORE EDUCATION WE PROVIDE AND
THE MORE TEACHING UP INSIDE THAT
WE PROVIDE AND SUPPORT AT THAT
SITE WE PROVIDE.
HI I'M ONE OF THE RECENT
EXPERIENCES THAT WERE HAVING
MORE AND MORE INCREASED.
AND HOW IT IS BEING REPORTED BY
THE STAFF IS I'M THE VETERANS
POPULATION.
AND SO IN PROVIDING THAT
INFORMED CONSENT TO THAT
POPULATION AROUND THEIR
BENEFITS.
ON IF THEY HAVE THE SENSE OF
QUOTE UNQUOTE AT OBJECTION
AROUND THE WHAT IFS.
AND SO SOME OF THEM ARE OPTING
NOT TO IN THAT BUS BY ITS
INCREASING SOME OF THEIR
SUFFERING.
AND THEN AT THE VERY FOREFRONT.
WHICH MANY HAVE MENTIONED
ALREADY IS THE IDEA OF THE POWER
THE ABILITY FOR FACILITIES
TOPPED OUT. AND SO HOW DO WE GET
CREATIVE IN SUPPORTING OUR
PATIENTS WHO ARE IN THE
FACILITIES LIKE HOSPITALS OR THE
ASSISTED LIVING FACILITIES ARE
SKILLED NURSING FACILITIES WHERE
THEY CURRENTLY RESIDE IN CALL
HOME. AND HOW DO WE HELP THEM IF
TRULY THEY ARE ELIGIBLE FOR THE
ACT IN THIS IS REALLY THEIR LAST
OPTION AND THE OPTION THAT THEY
WANT TO CHOOSE.
DESPITE THE CHALLENGES WE'RE
GONNA KEEP GOING AND WILL WILL
MOVE FORWARD AND.
AT THAT REALLY KEEP OUR
PATIENTS THEIR FAMILIES AT THE
FOREFRONT OF THE CARE THAT WE
PROVIDE I REALLY THINK THE
ASSEMBLY FOR. PERMITTING US TO
CONTINUE THIS DISCUSSION AND
LEARN MORE FROM ONE ANOTHER.
VERY MUCH.
MADAM CHAIR AND MEMBERS OF THE
COMMITTEE THANK YOU AYE AYE ECHO
YOUR APPRECIATION THAT THIS
PROCESS OF COMING BACK TO THE
TABLE EACH YEAR IS BUILT INTO
WHAT'S HAPPENING AT THE ROOT OF
IT HERE WHERE THE LAWS BEEN
CREATED.
I FIRMLY BELIEVE THAT THE MORE
WE CAN HAVE CONVERSATIONS AND
HAVE DIFFERENT PEOPLE COME TO
THE TABLE.
THE MORE WE'RE GOING TO BE ABLE
TO FIT IN CAN CONTINUE TO
IMPROVE THIS OPTION FOR OUR
PATIENTS AND THEIR FAMILIES.
SO.
MY NAME IS MK NELSON AND I AM
DIRECTOR OF SPIRITUAL CARE
ADMISSION HOSPICE AND HOME CARE
WHERE IN SAN MATEO COUNTY. WE
ARE AT A LOCAL HOSPICE THAT
STARTED ABOUT THIRTY NINE YEARS
AGO JUST FROM TWO OF THE OUR
COMMUNITY MEMBERS WHO. WANTED TO
HAVE HOSPICE IN THEIR OWN
COUNTY.
WE'VE GROWN A LOT ESPECIALLY IN
THE LAST TEN YEARS.
.
I WOULD SAY THAT WE'VE BECOME
MUCH LARGER THAN WE HAD BEEN
ORIGINALLY WE HAVE AROUND TWO
HUNDRED AND THIRTY TO TWO
HUNDRED FORTY PATIENTS THAT WE
SERVE.
SINCE THE LAW HAS PASSED.
.
WE HAVE ACTUALLY SERVED OF ABOUT
THIRTY SIX PATIENTS
WHICH IS A MUCH HIGHER NUMBER
THAN WE ANTICIPATED.
EVEN WITH EXPECTING LOWER
NUMBERS.
WE BEFORE JUNE NINTH TWENTY
SIXTEEN CAME WE REALLY WANTED TO
BE PREPARED.
WE KNEW THAT WE HAD A COUPLE OF
DOCTORS WHO WOULD PROBABLY BE
WILLING TO BE ATTENDING
PHYSICIANS.
AND WE ALSO JUST RECOGNIZE THAT
THIS WAS A NEW HORIZON FOR END
OF LIFE CARE I MYSELF I'VE DONE
HOSPICE WORK FOR ABOUT TWELVE
YEARS.
AND IT HAS BEEN TRUE THAT EVEN
FOLKS WHO ARE VETERANS IN THE
HOSPICE WORLD THIS HAS BEEN.
KIND OF A HUMBLING A NEW
EXPERIENCE IT REALLY DOES TAKE
IT TO THE TO THE NEXT LEVEL.
BUT WE WHATEVER LEVEL THAT MAY
BE.
SO WE WANTED TO BE PREPARED.
TO THAT END WE.
HAD A SERIES OF BROWN BAG
LUNCHES WITH OUR STAFF.
INCLUDING ART MINISTRY TO STAFF
IN OUR CLINICAL STAFF MAKING
SURE THAT FOLKS HAD A CHANCE TO.
EXPRESS THEIR CONCERNS ASK THEIR
QUESTIONS HAVE OPEN INTO
DIALOGUE
AND THESE CONVERSATIONS WERE
FACILITATED BY SOCIAL WORKERS
AND SPIRITUAL COUNSELLORS I'M
AND THEN FROM THAT A SMALLER
INTERDISCIPLINARY GROUP CRAFTED
OUR POLICY.
WERE CALLING IT A GROUND UP
POLICY REALLY BECAUSE WE WANTED
IT TO. COME FROM ALL OF STAFF WE
WANTED FOLKS TO FEEL LIKE THEY
HAD A VOICE IN WHAT THE PROTOCOL
ON POLICY WOULD BE IN THE
AGENCY.
SO.
ONCE THE POLICY WAS CREATED WE
ARE ALSO EXTREMELY INTENTIONAL
ABOUT HOW WE RULED IT OUT.
WE WANTED TO MAKE SURE THAT
EVERYONE KNEW WHAT OUR CHOICES
HAD BEEN KNEWWHAT THEIR
INFORMATION WAS AND TO CREATE
JUST ANOTHER OPPORTUNITY AGAIN
TO COME BACK TO THE TABLE. AND
HAVE DIALOGUE HAVE QUESTIONS
A IT SEEMS LIKE THERE IS NO IN%
TWO QUESTIONS EXPLORATION IN
REFLECTION ON THIS TOPIC.
AND SO I PERSONALLY WENT AROUND
TO EACH DISCIPLINE AT THEIR OWN
STAFF MEETINGS AND CREATED THAT
SPACE FOR THEM TAKING UP AN HOUR
OR AS MUCH TIME REALLY IS
NEEDED.
BUT USUALLY THE CONVERSATIONS
WERE PRETTY EXTENSIVE.
.
AS WE.
CAN TEXT OR TO TO HAVE SOME ON
THE GROUND EXPERIENCES.
.
WE WANTED TO MAKE SURE THAT
STAFF FELT SUPPORTED THAT THEY
FELT THAT THEY. WERE ABLE TO
COME INTO MY OFFICE INTO
ANYONE'S OFFICE AND HAVE
DIALOGUE AROUND IT. WE ALSO
WANTED TO MAKE SURE THAT THEY
KNEW A COUPLE OF THINGS ONE.
THEY COULD OPT OUT AND THAT
THEIR CHOICE IN THEIR OPINION
WOULD BE RESPECTED.
AND THAT'S ANYWHERE FROM A
DOCTOR TO ANYONE ELSE IN THE
AGENCY WHO MIGHT BE ENCOUNTERING
FOLKS.
AVAILING THEMSELVES.
WE ALSO WANTED FOLKS TO HAVE
THOUGHT ABOUT THIS ENOUGH.
AND HAD ENOUGH CONVERSATION THAT
SHOULD THEY ENCOUNTER A QUESTION
ABOUT IT FROM. A PATIENT A
FAMILY MEMBER EVEN JUST SOMEONE
IN THE COMMUNITY IF THEY DIDN'T
WISH TO DISCUSS AT THAT THEY
COULD. GRACIOUSLY DECLINE THE
CONVERSATION AND STEER THEM IN
THE RIGHT DIRECTION AND WE
DIDN'T WANT TO PERPETUATE ANY
KIND OF SHAMAR JUDGMENT FROM
THAT KIND OF QUESTION COMING UP
SO. THAT WE WANT FOLKS TO NOT BE
CAUGHT OFF GUARD WE DIDN'T WANT
IT TO BE A TABOO SUBJECT THAT
OUR STAFF MEMBERS WERE
WHISPERING ABOUT IN THE CORNERS
RIGHT. THIS IS SOMETHING THAT.
IS A BIG DEAL FOR OUR STATE AND
AND AND FOR OUR AGENCIES SO.
ABOUT SIX SEVEN MONTHS IN WE
DECIDED TO REVISE THE POLICY WE
JUST WANTED TO KIND OF REVISIT
ON THE GROUND EXPERIENCES. AND
TAKE A LOOK AT WHAT WHAT WAS
WORKING INTERNALLY WHAT WASN'T
I'M ORIGINALLY WE HAD REQUIRED
INTERDISCIPLINARY TEAMS TO HAVE.
BOTH A PRE BRIEF AND A DEBRIEF
IF ANYONE EXPRESSED INTEREST.
IN USING THE MEDICATION THEN
THE WHOLE TEAM WOULD MEET A JUST
TO MAKE SURE EVERYONE IS ON THE
SAME PAGE EXPLORE OPPORTUNITIES.
AND THEN.
.
AND THEN AFTER THE DEATH AS WELL
JUST TO MAKE SURE THAT YOU HAD A
CHANCE TO SHARE THE STORY.
.
WE FOUND THAT AFTER AWHILE IT
WAS A LITTLE BIT LIKE HERDING
CATS IT WAS REALLY. DIFFICULT.
TO MANAGE THAT WITHIN OUR
AGENCY IN SO.
AND THAT WAS ONE OF THE
REVISIONS THAT WE MADE IN THE
POLICY THAT WE STILL STRONGLY
ENCOURAGED.
FOLKS TO DO THAT BUT THAT IT WAS
NO LONGER MANDATORY I'M AND BY
THAT TIME WE OBSERVE SOMETHING
SIMILAR TO WHAT YOU MENTIONED
THAT FOLKS WERE BECOMING MUCH
MORE COMFORTABLE. IN TALKING
ABOUT IT IN ENCOUNTERING IT
SEVERAL PEOPLE THAT HAD ON THE
GROUND EXPERIENCES SO WE'VE JUST
BEGAN TO.
CREATE OPEN FORUMS AGAIN WHERE
FOLKS CAN COME BACK TO THE TABLE
SHARE THEIR STORIES AND.
CLINICIANS REALLY SEEM TO
BENEFIT FROM HEARING WHAT OTHER
FOLKS HAD ACTUALLY GONE THROUGH
WHICH IS ON THE GROUND ACTUAL.
STORIES.
ALSO SIX OR SEVEN MONTHS AND WE
STARTED GETTING A LOT OF PHONE
CALLS FROM OUR HEALTHCARE
PARTNERS.
DIFFERENT FACILITIES WHERE THAT
WE WORK WITH OTHER HEALTH CARE
AGENCIES WHO HAD SOMEHOW HEARD
THAT WE WERE BEING VERY OPEN I'D
IN ENGAGING WITH THIS WITH OUR
STAFFING COULD WE COME IN. AND
HELP THEM FIGURE OUT HOW TO TALK
TO THEIR STAFF FIGURE OUT HOW TO
CRAFT A POLICY AND SO. I'VE
SPENT A FAIR AMOUNT OF TIME
DOING THAT WORKING WITH HEALTH
CARE PARTNERS IN SAN MATEO
COUNTY JUST TO.
KIND OF DEMYSTIFY IT IN A WAY ME
MY EXPERIENCE OF HAD MANY
CONVERSATIONS SO FAR SOME WITH
LEADERSHIP AND PRESIDENTS AND
DIRECTORS OF AGENCIES AND.
DOWN TO HOME HEALTH AIDES IN
FOLKS WHO ARE WORKING VERY
INTIMATELY ON THE GROUND WITH
PATIENTS.
AND MY EXPERIENCE EVERY TIME HAS
BEEN THAT MOST OF THE PEOPLE GOT
UP FROM THE TABLE FEELING BETTER
THAN WHEN THEY HAD SAT DOWN. AND
IT'S NOT BECAUSE I OFFERED ANY
KIND OF.
IN LIGHTNING WISDOM IT WAS
BECAUSE THEY HAD A CHANCE TO
TALK ABOUT IT ASK THEIR
QUESTIONS.
EVEN IF THERE WAS.
.
YOU KNOW MIXED FEELINGS WITHIN
THEMSELVES I MEAN THAT'S PRETTY
COMMON RIGHT YOU CAN. YOU CAN
HAVE IT MULTIPLE FEELINGS ABOUT
ONE PARTICULAR THING
PARTICULARLY WHEN IT'S IS A
COMPLEX IS THIS.
SO.
WHAT I WANT? TO SHARE GOING
FORWARD.
WHAT WE'VE OBSERVED A COUPLE OF
THINGS?
INTERNALLY WITH OUR STAFF.
.
BECAUSE
TO SOME DEGREE THE EXPERIENCE
HAS BEEN.
BECOME MORE COMMON.
.
NOT EVERYONE IS AVAILING
THEMSELVES OF THE KIND OF
SUPPORT THAT WE THOUGHT THEY
MIGHT NEED AND.
SO GOING FORWARD JUST JUST
RECENTLY REALIZED NO MAYBE.
CLINICIANS DON'T FEEL THAT THEY
NEED SUPPORT.
BUT THAT DOESN'T MEAN THEY DON'T
HAVE STORIES TO SHARE AND SO
THAT'S HOW WE'RE KIND OF
SHIFTING.
OUR INTERACTION WITH OUR OWN
STAFF GOING FORWARD IS CREATING
SPACES FOR THOSE STORIES IN IN
THAT.
PROCESS ANY KIND OF SUPPORT WILL
BE.
DID UPON AND THERE'S ATTENTION I
THINK FOR HOSPICE PROVIDERS
BETWEEN.
EVERY DAY END OF LIFE CARE THAT
WERE USED TO GIVING.
AND AND OF LIFE OPTION AT CARE.
AND ON THE ONE HAND.
IT'S THE SAME CARE WE GIVE EVERY
DAY RIGHT THE BEST PRACTICES
THAT WE ARE TRYING TO DEVELOP WE
REALIZED.
WE WANT THIS LEVEL OF
COMMUNICATION WITH ALL OUR
PATIENTS AND FAMILIES IN BETWEEN
THE TEAM. AND AT THE SAME TIME
THERE IS SOMETHING.
PROFOUND ABOUT THE EXPERIENCE
SOMETHING THAT'S HARD TO PUT
WORDS TO.
AND SO.
WHAT I AM COURAGE ALL OF US TO
DO IS TO BE ABLE TO JUST HOLD
THAT TENSION IN MAKE SPACE FOR
ALL OF IT IT'S NEVER REALLY
GOING TO BE BLACK AND WHITE?
IT'S GRAY.
SO WITH THAT.
THANK YOU FOR YOUR TIME I
APPRECIATE IT.
THANK YOU VERY MUCH.
GOOD MORNING.
THANK YOU MADAM CHAIR AND
ASSEMBLY MEMBERS I AM VERY HAPPY
TO BE HERE TO PARTICIPATE IN THE
DISCUSSION TODAY.
I'M HERE SPEAKING ON BEHALF OF
THE ELIZABETH HOSPICE IN SAN
DIEGO ABOUT WHAT OUR EXPERIENCE
HAS BEEN. BOTH PRIOR TO
IMPLEMENTATION AND SINCE THE
ENACTMENT OF THE END OF LIFE
OPTION ACT.
SOAP MY I'D ARE SET WE ARE THE
LARGEST A HOSPICE IN SAN DIEGO
AT THIS TIME A WERE NONPROFIT
COMMUNITY BASED PROGRAM OUR
AVERAGE DAILY CENSUS IS RUNNING
ABOUT FIVE HUNDRED AND FIFTY.
HOSPICE PATIENTS AND WE ALSO
OFFER.
PALLIATIVE CARE AND WE SERVE OUR
CHILDREN AND ADULTS.
IN OUR WHAT I ALSO AND I'M ALSO
INTERESTINGLY HERE.
HAVING EXPERIENCED A RECENT
LOSS MYSELF BEING ON THE
RECEIVING SIDE OF HOSPICE
IMPERATIVE CARE MY HUSBAND DIED
A FEW MONTHS AGO. AFTER AN EIGHT
YEAR.
EXPERIENCE OF STAGE FOUR CANCER
AND SO UP ALL OF THIS BECAME WAS
AYE I'VE DONE HOSPICE MY WHOLE
CAREER IN NURSING BUT AGAIN IT.
BECAME UP LESS ABOUT ABSTRACT
CONVERSATIONS THAN REALLY THE
REALITY OF THESE AND THE
IMPORTANCE OF ALL OF THE
CONVERSATIONS WE'VE DISCUSSED
TODAY.
I AND SO SOME OF MY OBSERVATIONS
FROM OUR EXPERIENCE HAS BEEN.
THAT REALLY THE QUALITY AND HOW
THAT'S DEFINED OF LOOK THE
QUALITY OF LIVING AND THE
QUALITY OF DYING IS A
FUNDAMENTALLY IN DEMAND INTIMATE
IN INDIVIDUALIZED DEFINITION AND
NO TWO ARE ALIKE.
AND WHY SOME PEOPLE MAY CHOOSE
TO SQUEEZE EVERY POSSIBLE DAY
FROM HERE.
FRAIL OF WORN OUT BODIES WHILE
OTHERS CHOOSE TO BE.
HAVE SELF DETERMINATION AND
CONTROL ABOUT THE TIMING OF THIS
PROCESS.
IS AT THIS POINT STILL
UNPREDICTABLE I THINK WE'VE SEEN
THE DATA WE SEE SOME OF THE
PROFILES BUT STILL I THINK
REALLY. IT WOULD BE HARD TO
PREDICT WHO'S LIKELY TO SELECT
THE.
THIS OPTION.
SO I IN BRIEF IN NINETEEN TWENTY
SEVENTEEN WE HAD ABOUT FORTY
EIGHT ENQUIRIES ABOUT THE END OF
LIFE OPTION ACT. AND ABOUT EIGHT
PATIENTS HAVE ACTED UPON THIS
OPTION IN IN THE CALENDAR YEAR
TWENTY SEVENTEEN. OUR
ORGANIZATION STARTED WAY BEFORE
THE IMPLEMENTATION OF THE LAW
BECAUSE WE HAD NO.
IDEA WHAT TO EXPECT WHERE WHERE
PEOPLE GOING TO BE CALLING RIGHT
AWAY. HOW WAS THAT GOING TO PLAY
OUT THERE REALLY WASN'T A LOT
OF?
AWAY TO ANTICIPATE THAT SO I
THINK YOU KNOW SIMILAR TO LEE AS
MY COLLEAGUES WE BEGAN PLANNING
EARLY AND DEVELOPED. OF.
A TASK FORCE THAT WAS.
STAFF AND LEADERS OF ACROSS THE
ORGANIZATION. AND I HAVE I
HAPPEN TO COULD SHARE THAT WITH
OUR C. E. O. OUR BOARD WAS VERY
VERY INTERESTED IN THE SUBJECT
WE HAVE BROUGHT CONSULTANCY. UP
RETREATS ON THIS THEY WERE VERY
INTERESTED IN REALLY IMMERSING
THEMSELVES TO MAKE INFORMED
DECISIONS OR GUIDANCE.
WE CREATED A POSITION STATEMENT
POLICIES AND PROCEDURES.
DEVELOPED A PROCESS FOR
CONSCIENTIOUS OBJECTION AND.
EVEN THAT PROCESS WENT THROUGH
SOME YOU KNOW WERE WE SUPPOSED
DID WE NEED A LIST OF WHO COULD
DO IT AT ANY GIVEN TIME PEOPLE
DIDN'T WANT TO BE ON A LIST. SO
IT'S WORKED OUT TO BE JUST AN
INDIVIDUAL CONVERSATION WITH THE
PERSON'S MANAGER AND IT'S WORKED
OUT FINE AND WE'VE NOT BEEN AT A
YACHT DEFICIT OF STAFF WILLING
TO. PARTICIPATE.
I SHOULD START BY SAYING THAT
OUR ORGANIZATION HAS A ADOPTED
THE STAND OF OF EDUCATION AND
SUPPORT BUT OUR PHYSICIANS DO
NOT PRESCRIBE THE MEDICATION. SO
WE'VE TAKEN A STEP TO. UP
PROVIDE RESOURCES AND EDUCATE
UPON REQUEST OR INCREASE ABOUT
THE ACT. AND.
A LOT OF THE STAFF NOW THAT
IT'S BECOME MORE COMMON IN OUR
COMMUNITY KNOW SOME OF THE
POSITIONS THAT ARE KNOWN TO UP
PERHAPS BE AVAILABLE TO THEM AS
CONSULTANTS.
AND.
AS THOUGH WE ALSO KIND OF WORK
THROUGH THE PROCESS OF STAFF AND
AND BEING PRESENT OR NOT. UP WE
HAD A COPY TALKS WAS THAT ARE
KIND OF OUR STRATEGY AT ALL OF
OUR DIFFERENT LOCATIONS FROM.
RIVERSIDE COUNTY THREE SAN DIEGO
THAT STAFF COULD COME AND OTHER
CREATE A SAFE SPACE TO DISCUSS
IT WITH THAT ASK ANY QUESTION.
WITH OUR POLICY YELLED.
AND IT CREATED AN ENVIRONMENT
FOR PEOPLE TO ASK THINGS THAT
THEY WERE PERHAPS
UNCOMFORTABLE ASKING AND JUST.
TO KIND OF TAKE IT OUT ON THAT
THIS CLOAK OF OF LIKE SOME SAID
SECRECY. OUT WE DID REQUIRED
EDUCATION FOR ALL OF OUR STAFF
BECAUSE WE REALLY FELT. THAT THE
KNOWLEDGE WAS IMPORTANT SO THAT
WE DID HAVE SOME PEOPLE MAKING
ASSUMPTIONS OR OPERATING OFF
MISINFORMATION OR SIMPLY THEIR.
THEIR PERSONAL INTERPRETATION
OF WHAT THE LAW MEANT US SO THIS
TASK FORCE THAT CREATED ALL OF
THIS.
THAT SORT OF THE TOOL KIT SO TO
SPEAK AND THEN WE HAD QUESTION
AND ANSWER SESSIONS WE DID
DEVELOP A FREQUENTLY ASKED
QUESTION HAND OUT AND THAT'S
ALSO AVAILABLE FOR FAMILIES. AND
THEN DID TRAINING FOR ALL OF OUR
VOLUNTEERS AS WELL.
IN OUR ORGANIZATION THE SOCIAL
WORKERS HAVE BECOME THE PRIMARY.
THE PERSON IDENTIFIED WITHIN
THE TEAM TO.
GO OUT TO HAVE THE CONVERSATION
ONCE SOMEONE IS MADE AN INCREASE
BOTH THE.
ABOUT THE OPTION.
AND THEY PROVIDE THE EDUCATION
RESOURCES.
OF COURSE WE LOOKED AT ALL BUT
THE OTHER STATES IMPLEMENTED
LOOKED AT OTHERS DOCUMENTS IN A
SORT OF USE THOSE AS A JUMPING
OUTTA A JUMP START FOR HOURS.
I THINK IT'S IMPORTANT TO
SIMPLY WISH WE HAD SOME RATHER
UNUSUAL AND UNEXPECTED THINGS
KIND OF AT THE VERY BEGINNING.
OF THE PROCESS THAT WE'RE REALLY
OUT OF OUR.
AT CONTROL. BUT ARE STILL
RATHER ODD IN PART OF OUR OUR
NARRATIVE.
I'VE RIGHT AROUND THE TIME WHEN
THE LAW BECAME ENACTED WE HAD.
THE PATIENT WHO ASKED ABOUT THE
LAW ASKED ABOUT THIS OPTION DOES
IT WAS. YOU KNOW FIVE AT NIGHT
SO SEWER CRANK CALLS SPOKE TO
THE GENTLEMAN KIND OF BRIEFLY
WENT OVER AT THE SET OUT.
GONNA SCHEDULED TO COME OUT
TOMORROW.
BRAND NEW PATIENT WELL THIS DOWN
AND TOOK HIS OWN LIFE.
AND WAS THAT FOUND WHEN THE
STAFF.
WENT OUT THE NEXT MORNING AND OF
COURSE. IT'S IMPOSSIBLE TO
EXTRAPOLATE WHAT THAT WAS ABOUT
HE HADN'T BEEN ON SERVICE TO
REALLY ASSESS BUT.
UNFORTUNATELY CREATED A
TRIGGERED OF COURSE THE. THE.
YOU KNOW THAT COUNTY CAME IN
DIDN'T VESTED GAUGE CHEN. AND
WHAT IT REVEALED TO US THOUGH
WHICH IS.
LATER WHEN MY RECOMMENDATIONS IS
THAT THE.
IN ANY OF THE COMMUNITIES I
THINK IN CALIFORNIA THAT THAT
WITH A LOCAL AND. STATE HEALTH
DEPARTMENT OR YOUNG PUBLIC HELP
THEY REALLY NEED TO UNDERSTAND
THIS BECAUSE IF THEY'RE COMING
INTO SURVEY HOSPICES. THEY HAD
ABSOLUTELY NO KNOWLEDGE OR
UNDERSTANDING OF IT SO EVEN
THOUGH THIS WASN'T.
SOMEONE CHOOSING AND GOING
THROUGH WITH THAT IT GOT TANGLED
UP IN IT IN A SENSE.
SO I THINK THAT'S AND I'M AN
ACTION STEP THAT WOULD AGAIN AS
THEY'RE COMING IN FOR OTHER
ISSUES WITH HOSPICES CREATE LESS
OF IT I MEAN ADVERSARIAL PUT PUT
THEM IN THE CONTEXT OF BEING
INFORMED.
SO.
BUT THIS.
THIS ACTUALLY REQUIRED THAT WE
PUT INTO PROCESS
A SITUATION OF DOING OF SUICIDE
RISK ASSESSMENTS ON OUR
PATIENTS.
SO THAT OF NOT THAT THEY
WOULDN'T IN A ROUTINE MATTER BUT
IN A VERY FOCUSED WAY SO NOW WE
HAVE A PROCESS THAT THERE'S A
BRIEF SUICIDE RISK ASSESSMENT
FOR ALL. NEW ADMISSIONS AND THEN
IF THEY DO REQUEST INFORMATION
REQUIRE ABOUT THE. ACT WE DO A
MORE IN DEPTH.
ASSESSMENT I MUST SAY THAT IT
IS NOT DONE IN A IN A MEAN STUFF
THAT IT'S PUNITIVE OR A
DETERRENT TO IT. BUT SIMPLY AS
RISK AVERSION BECAUSE OF THIS WE
HAD A FEW.
SUICIDES ALL IN A CLOSE PERIOD
OF TIME THAT I THINK WERE NOT
RELATED TO.
PURSUING THE LEGAL PROCESS IN
THE MEDICATION BUT PUT IT IN THE
CONTEXT OF A MORE RIGOROUS
SCRUTINY.
SO.
BUT THE GOOD PART IS THAT IT
YIELDED SOME INCREDIBLE
CONVERSATIONS WITH FAMILIES
THAT.
THEY HAD SOME HAD BEEN SECRETLY
THINKING ABOUT.
AID IN DYING NEVER TALKED ABOUT
IT IT SORT OF OPENED UP THE
OPPORTUNITY TO HAVE DISCUSSIONS
ABOUT WILL. RENO TELL ME MORE
WHAT ARE YOU CONCERNED ABOUT ONE
OF THE THINGS YOU'RE CONCERNED
THAT MIGHT HAPPEN DOWN THE ROAD.
SO WE FOUND THAT THERE A LOT
MORE PEOPLE. INQUIRING ABOUT IT
THAN ACTUALLY CARING THROUGH
WITH IT.
BUT I DO THINK THAT IT'S THE
WHOLE PROCESS HAS YIELDED MORE
IN DEPTH CONVERSATIONS ABOUT.
LOOKING AT THOSE OF FEARS AND
CONCERNS SOME OF THE CHARM
REALISTIC SUMMER NOT WHAT OTHER
WAYS CAN WE ASSIST PEOPLE THAT
HAVE CONTROL IN THEIR LIVES.
THIS IS LARGELY I THINK ABOUT
CONTROL AND SO WHAT ARE WAYS
THAT WE CAN HELP ENHANCE.
CONTROL IN THE LIVES OF THE
PEOPLE THAT WERE SERVING.
SO THIS WE DID A LOT OF
TRAINING WITH OURS ARE SUCH
WORKERS ON THIS PROCESS. AND AT
FIRST I FELT LIKE IT WAS.
I THINK THEY WERE CONCERNED IT
WOULD BE.
OBSTRUCTIVE BUT IT IS NOT.
DEMONSTRATED THAT IN OUR PROCESS
SO I THINK WHAT IT HAS HEALED IT
IS THE RICHNESS OF THE
CONVERSATIONS REGARDLESS OF THE
FAMILY'S CHOICE TO THE PATIENT'S
CHOICE TO CONTINUE OR NOT. ALONG
THIS LEGAL PAD.
IT'S UP ONE OF THE THINGS I
ALWAYS REFERRED TO AS A KIND OF
ALLOWED WHAT.
DOCTOR I REPLY ACT REFERRED TO
AS THE FOUR THINGS THAT MATTER
MOST THAT IN WHATEVER TIME THEY
HAVE LEFT.
THEY HAVE THOSE I THINK OTHERS
HAVE DISGUSTED ABOUT YOU KNOW
FINDING MEANING IN THEIR LIFE
HAVING OPPORTUNITIES FOR.
BEING ABLE TO OFFER FORGIVENESS
ACCEPT FORGIVENESS GRATITUDE AT
CETERA. DOT AND THE OTHER.
EXPERIENCE THAT WE SAW THAT
AGAIN JUST I THINK FOR
TRANSPARENCY IS THAT.
WE THEIR THE LAW DOES GIVE THE
INDIVIDUAL THE OPTION TO HAVE
COMPLETE PRIVACY SO NO ONE ELSE
NEEDS TO KNOW AND OF COURSE THE
HOSPICE TEAM. RESPECT THAT IN RD
BRIEFS WITH THE STAFF WHICH WE
TRY TO DEBRIEF INDIVIDUALLY WITH
EACH THAT CASE BUT AGAIN DOES
SORT OF GO. OFTEN IS MORE
INFORMAL AS TIME GOES ON. BUT
THAT IT SEEMS THAT IT DID
BECAUSE MORE DISTRESSED WHEN THE
FAMILY MEMBERS ADULT FAMILY
MEMBERS WERE NOT. ALLOWED TO BE
INFORMED AND YOU KNOW FLUENT AT
THE LAST MINUTE OR WAS KIND OF A
FIRE DRILL KIND THAT THE LAST.
AND SO WE WILL COURSE HONOR
THEIR WISHES AND THEIR
PREFERENCES BUT THE SUCH WORKERS
HAVE COMMENTED THAT IT DID MAKE
IT A LITTLE BIT MORE COMPLICATED
WHEN. FAMILY MEMBERS WHO WEREN'T
PART OF THAT DISCUSSION WHETHER
THEY ALL AGREED OR NOT IT JUST
HAVE NOT HAD AN OPPORTUNITY FOR
THEIR MAYBE GOODBYES ARE THERE
OPPORTUNITY TO.
JUST COLLECTIVELY HAVE THAT A
DIFFICULT CONVERSATION SO THEY
AYE. THE SUMMARY THAT I GOT FROM
THE SOCIAL WORKERS IN THERE ON
MY INTERVIEWS WITH THEM IS THAT
THE WHEN IT IS PLANNED WHEN
THERE IS SOME THOUGHTFUL
DIALOGUE AMONG THE. FAMILY
MEMBERS THAT THE FAMILY MEMBERS
TO AND. FOR THE MOST PART EVEN
IF THEY DON'T AGREE MAY SUPPORT
THE PATIENT'S WISHES BECAUSE
THEY AT LEAST UNDERSTAND THE
CONTEXT
BETTER.
.
SO AGAIN WE'RE WE AREN'T.
PRESCRIBING BUT WE DID HAVE OUR
ONE OF OUR VERY FIRST OF THAT
WENT THROUGH THE PROCESS OF THE
PROCESS WITH THE PRESCRIPTION
AND THAT THE MEDICATION.
ENDED UP TO BE SOMEONE WHO
WASN'T A DOCTOR WAS A
CHIROPRACTOR.
AND THE PATIENT WOKE UP ABOUT A
LIKE A COUPLE HOURS LATER AND
CREATED A LOT OF DISTRESS AND.
WHAT HAVE YOU AND SO AS A RESULT
WE CHANGED OUR PRACTICE
A SIMILAR TO WHAT YOU'RE DOING
IS THAT NOW IF THE FAMILY WANTS
US TO BE THERE WE WILL SO THAT
WE CAN IMPLEMENT SYMPTOM
MANAGEMENT?
IN A WAY PALETTE OF SYMPTOM
MANAGEMENT AND BE PRESENT SO WE
TO.
REQUIRE THAT SOMEONE ELSE BE
THERE WITH THE PATIENTS SO
THEY'RE NOT THERE ALONE BUT THAT
OUR THE BOARD AND OUR
ADMINISTRATION FELT STRONGLY
THAT IT. OTHER THAN THAT IT
WOULD CREATE A SENSE OF
ABANDONMENT FOR WHAT THE PATIENT
AT THAT TIME SO WE WOULD EVEN
INSTITUTE.
CRISIS CARE WHICH IS A BENEFIT
OF THE MEDICARE BENEFIT IF THEY
HAVE.
ACUTE SYMPTOMS THAT NEEDED TO
BE.
OP MANAGED SO. I THINK.
IN SUMMARY I THINK THE
REFLECTION IS THAT I THINK IT IS
TO THE DEGREE THAT ONE WOULD BE.
ENCOURAGED TO INCLUDE FAMILY
MEMBERS THAT'S OPTIMAL OUTCOME
FOR PERHAPS FOR EVERYONE. AND I
THINK THAT WHAT I'D LIKE TO SEE
IS IT WAS MAYBE MENTIONED BUT I
THINK ALL AND I'M SPEAKING AS A
HOSPICE PROVIDER. I THINK THAT
ALL THE HOSPICE PROGRAM SHOULD
BE REQUIRED TO USE THE SAME
TRACKING TOOL. OF FROM START TO
FINISH OF UP YOU KNOW.
HOW MANY INCREASE ARE THERE?
WHAT'S THE DISPOSITION DO THEY
GET A MEDICATION DO THEY NOT DO
THEY USE IT DO THEY NOT SO THAT
WE HAVE WE'RE ALL TRACKING THE
SAME INFORMATION AND I THINK
THAT WILL JUST CONTINUE TO
INFORM THE PROCESS.
AND POSSIBLY EVEN THE
BEREAVEMENT OUTCOMES ALTHOUGH
THAT IS MORE LONG TERM BUT IT
COURSE JUST THE IMMEDIATE.
IMPLICATIONS PERHAPS JUST TO
KIND OF GET A SENSE OF THAT. AND
AGAIN AS I SAID TRAINING ON THE
LOCAL LEVEL FOR THOSE WHO MAY BE
SURVEYING INVESTIGATING
HOSPICES.
AND PERHAPS GREATER TRANSPARENCY
WITH A HOSPICE PROVIDER ON WHAT
THE MEDICATION IS THAT WILL BE
GIVEN SO THAT SHOULD PROBLEMS
ARISE. WE CAN BE IS.
EFFICIENT AS POSSIBLE AND
HELPING.
IN EVALUATING THE EFFICACY OF
WHATEVER THE MEDICATION
COMBINATION IS SO WHILE PATIENTS
ARE ALLOWED TO PURSUE ALL THE
LEGAL OPTIONS. AS OTHERS HAVE
STEP SAID IT'S STILL THIS
CRITICAL NEED FOR OUR SYSTEMS TO
CONTINUE TO BE AGGRESSIVE IN THE
TRAINING REQUIREMENTS FOR ALL
THE HEALTH CARE PROVIDERS AS
WELL AS. THE GENERAL PUBLIC I DO
THINK THERE'S A REAL. LACK OF
UNDERSTANDING OF.
WHAT EITHER WHAT IT MEANS OR
THAT IT DOESN'T?
IT THAT THERE'S A PROCESS IN WHO
QUALIFIES SO WE DO A LOT OF
EDUCATION ON THAT. YOU FOUND
THAT SO I THINK SAFE. DIGNIFIED
END OF LIFE CARE FOR ALL AND THE
MAJORITY OF PATIENTS MAY NOT
PURSUE THIS BUT THAT WE NEED TO
CONTINUE TO BE DIPPING
AGGRESSIVE IN THAT CARE AND
SERVICES THAT WE DO PROVIDE. FOR
OUR FAMILIES.
AND CONTINUE TO PROVIDE
EDUCATIONAL OPPORTUNITIES AS
OTHERS ARE DOING THAT WE. OUGHT
THAT WE'RE ALSO DOING SO I THINK
THOSE ARE THE TOP
RECOMMENDATIONS THAT.
THAT I CAN SEE SO THAT WE'RE
CONTINUING TO SERVE OUR PATIENTS
IN BODY MIND AND SPIRIT ACROSS
THE CONTINUUM FOR PALLIATIVE
CARE THROUGH END OF LIFE CARE.
SO THAT ALL OUR PATIENTS
REGARDLESS OF THEIR CHOICES.
EXPERIENCE LAST SUFFERING LESS
FEAR AND CAN FEEL CONFIDENT IN
THE CARE GIVERS THAT ARE
SURROUNDING THEM IN THIS TIME
SO.
THINK YOU VERY MUCH A AND I
DON'T WANT YOU TO TO SEE THAT
OTHER MEMBERS LEFT AS A LACK OF
INTEREST IT'S JUST A VERY BUSY
DAY WITH THE PEOPLE HAVE A LOT
OF THINGS AND WE ARE BEING
TELEVISED SO THERE'S A LOT OF
PEOPLE. WATCHING AND INTERESTED.
ON AN AUGUST EIGHT TO THANK YOU
ALL VERY MUCH I I WAS A POSSIBLE
SOCIAL WORKER AND.
WHEN I STARTED THIS STEPPED UP
PEOPLE I HEARD THE MOST NEGATIVE
FEEDBACK FROM MY FORMER HOSPICE
COLLEAGUES AND BECAUSE THERE HAS
LONG BEEN KIND OF THE. PEOPLE I
THINK OFTEN THINK HOSPICES WOULD
BE THE MOST ACCEPTING OF
SOMETHING LIKE THIS BUT
OFTENTIMES BECAUSE THEY HAVE
BEEN DOING THE VERY HANDS ON
WORK FOR SO LONG. IT IS A A
TOTAL SHIFT TO THINK ABOUT
SOMETHING A DIFFERENT WAY SO I
KNOW THE STRUGGLE INTERNALLY. IN
THE ORGANIZATION INJURING TO
IMPLEMENT THIS SO THANK YOU ALL
FOR YOUR VERY THOUGHTFUL WORK.
THURMOND.
JUST WOULD ADD TO THE THANKS FOR
YOUR HUMANE AND COMMITTED CARE
TO OUR PATIENTS AND.
INCORPORATION WITH CORPORATE IN
THIS OPTION ANNA HUMANE CARING
PASSION THINKING AND I THINK
IT'S BEEN CONSISTENT ACROSS
PRESENTATIONS ABOUT.
THAT MORE DATA WOULD BE VERY
HELPFUL BOMB AND MANY ROOM AND
WE HAVE SOME WORK TO DO WITH
PUBLIC HEALTH AND DIE AND I
THINK SOME OF THE A BOMB THE
FORMS THAT ARE SUBMITTED AND HOW
DO YOU. KNOW HOW DO YOU ENSURE
THEY'RE ALL COMPLETE AND HONEY
AND SHIRTS ALL REPORTED. AND
THEN THE ACROSS SYSTEM STUFF AS
YOU KNOW IS EVEN MORE
COMPLICATED TO.
TO MANDATE IT BEING BETTER
PEOPLE ARE DOING IT.
I AM.
JUST KIND OF THE COLLABORATIVE
LIFE BUT.
IT IS WHAT IT IS A SO THANK YOU
ALL VERY MUCH AND AND FOR YOU IF
I MAY I JUST WANTED TO ADD ONE
OTHER AREA WE'VE READ RECENTLY
NOTICED THAT. COULD USE SOME
MORE EDUCATION AND DIALOGUE
NEEDS ARE ARE MORE DISTANT
HEALTH CARE PARTNERS.
FOR EXAMPLE WE HAD A A BEREAVED
FAMILY MEMBER WHO HAD TO PRETTY
DIFFICULT EXPERIENCES ONE BEING
AT THE PHARMACY WHEN SHE WENT TO
PICK UP THE MEDICATION. THAT THE
PHARMACIST.
THEY HAD NO SENSITIVITY AROUND.
OR OR AND DISCRETION AROUND WHAT
WAS THE EXCHANGE THAT WAS
HAPPENING AND SO YOU KNOW THAT.
COULD BE REMEDIED ON A LOCAL
LEVEL AT LEAST BY US JUST GOING
AND HAVING A CONVERSATION AGAIN
SETTING UP AT THE TABLE SHE ALSO
MADE A PHONE CALL TO HER
INSURANCE PROVIDER.
AND THE PERSON ON THE OTHER END
SEEM VERY ILL PREPARED TO KNOW
WELL I'M NOT ALLOWED TO TALK
ABOUT THAT AND PRETTY MUCH HUNG
UP YOU KNOW SO. AND THERE ARE
THESE OTHER WAYS THAT WE HADN'T
NECESSARILY THOUGHT OF WHERE WE
CAN CONTINUE TO HAVE
DIALOGUE AND CONVERSATION JUST
TO TRY AND GET.
PEOPLE TO FEEL LITTLE MORE AT
EASE.
BE GREAT IF WE COULD LEGISLATE
KINDA SYMPATHY. WHEN IT OUT.
YOU DON'T KNOW PLEASE.
NECK NECK NEXT NEXT YEAR FILMING
OF ANYTHING HELP WANT TO THANK
YOU FOR THE OPPORTUNITY TO HAVE
THE CONTINUE DIALOGUE INTO. A
LEARN FROM EACH OTHER TO
CONTINUE TO COLLECT INFORMATION
AND DATA THAT I THINK HELPS US
ALL MAKE MORE INFORMED DECISIONS
FOR ORGANIZATIONS AND TO. JUST
ENHANCE OCCUR WERE PROVIDING SO
WE APPRECIATE THE OPPORTUNITY
FOR THE DIALOGUE TODAY. AND BLOW
FORCING HER TO BACK NEXT YEAR
WILL DO IT AGAIN AND KEEP
GETTING BETTER OKAY THANK YOU
ALL VERY MUCH. NEXT UP WE HAVE
THE PATIENTS EXPERIENCE AS WE
HAVE KEEP WEST AND INDIA'S
COMPASSIONATE CHOICES.
BAQUBA COIN FROM UCSF
RAHEEM HUSSEINI.
KELLY DAVIS ROBERTA STONE AND
JACQUI MINOR THEY'RE ALL HERE WE
CAN ALL.
COME.
THIS EVERYBODY IN THE ROOM KNOWS
THAT THE WITHOUT COMPASSIONATE
CHOICES LEADERSHIP AND ADVOCACY
GROUP PROBABLY WOULD NOT BE
SITTING HERE SO. ALWAYS A HUGE
THANK YOU.
TO THE ORGANIZATION.
THEN AS WE AS WE KNOW.
EVERYBODY'S EVERYBODY'S
EXPERIENCE IS IS.
RON PAINFUL AND PERSONAL WOULD
ALSO LESSEN.
WE CAN BE A LITTLE BIT CONSCIOUS
OF TIME.
THANK YOU.
HELLO MISTER YES.
OH HI THERE MY FIRST.
OKAY.
THEM.
THANK YOU.
.
I HAVE A FEW.
BAIRD THINGS AN ALTERNATIVE STAY
ON TOP ON ON POINT.
SO GOOD MORNING GOOD MORNING
STILL MY NAME IS DAN DE IS NINE
BRITAIN MCCARTY.
BRITNEY DIED THREE YEARS AGO NOW
IN PORTLAND OREGON.
.
BRITAIN ARE CALIFORNIANS BUT WE
HAD TO MOVE FROM OUR HOME AND
DRIVE SIX HUNDRED MILES NORTH.
IN ORDER FOR HER TO HAVE THIS
OPTION.
OF A GENTLE DYING PROCESS.
IF IT WERE TO BECOME NECESSARY
FOR HER.
THE REASON THE BRITNEY SPOKE UP
WAS BECAUSE SHE THOUGHT IT WAS A
HUGE INJUSTICE THAT WE HAD TO
LEAVE OUR HOME.
SHE SPOKE UP.
AND HERE COMES THE MOTION
SHE SPOKE UP FOR PEOPLE SHE
WOULD NEVER MEET.
TERMINALLY ILL INDIVIDUALS AND
HER PREDICAMENT.
TERMINALLY.
NO HARASSED.
TERMINALLY ILL INDIVIDUALS.
THAT.
MAYBE IT WOULDN'T HAVE THE
ABILITY TO TRAVEL TO ANOTHER
STATE.
.
AND SHE ALSO SPOKE UP.
FOR THE BENEFIT OF FAMILY
MEMBERS
ALL OF US WHO CARE FOR OUR
PRECIOUS LOVE.
OVER THE PAST THREE YEARS I'VE.
HAD BEEN COUNTLESS FAMILY
MEMBERS REACHED OUT TO ME. AND
SHARE HOW GRATEFUL THEY ARE TO
BRITNEY FOR SPEAKING UP.
.
THEY THEY SAY TO ME THAT THEY
CAN'T IMAGINE WHAT YOU WENT
THROUGH.
THEY. SHOW THEIR GRATITUDE TO.
HOW BRAVE OF AN ADVOCATE SHE
WASN'T EVERYTHING THAT YOU WENT
THROUGH?
?
A FEW HAVE TOLD ME THAT THERE'S
NO WAY. THEY COULD HAVE MOVED
THEIR LOVED ONES
OF FROM THEIR HOME.
.
THIS LAW IN CALIFORNIA.
AFFORDED US.
THIS PIECE.
AND WE THANK GOD FOR THAT
EVERYDAY.
TWO FAMILY MEMBERS IN PARTICULAR
COME TO MIND BOTH OF WHOM HAD
KAISER BOTH OF WHOM SAID THAT
THEIR EXPERIENCES WENT.
EXTREMELY WELL.
.
LISTENING TO THE OTHER TEST
FIRES HERE TODAY.
I FEEL A GREAT SENSE OF PRIDE IN
BRITAIN IS ADVOCACY.
AYE LOW I LOOK BACK AT THE LAST
FEW WEEKS OF HER LIFE.
AND I MARVEL.
AT HER DETERMINATION TO MAKE A
DIFFERENCE EVEN.
AS SHE.
AS SHE WAS NAVIGATING.
HER OWN DYING PROCESS AT THAT
TIME.
I'D LIKE TO THANK.
ASSEMBLY MEMBER EGGMAN.
SENATOR.
MONNING SENATOR WALK.
I.
AND EVERYONE INVOLVED
WITH THE PASSAGE
AND IMPLEMENTATION OF THIS
LEGISLATION.
BROOKE QUICKLY A FEW OF THE
THINGS THAT I'VE DONE.
THAT WERE BROUGHT UP BY.
A FEW THE INDIVIDUALS UP ON THE
DAIS THEIR.
.
IS FOREST'S THE THE PASSAGE OF
THE LAW HERE IN CALIFORNIA IT IT
ALSO HELPED BRITNEY STORE IN THE
AND PASSAGE IN COLORADO IN TO
SEE. I'VE NEVER BEEN TO TWELVE
DIFFERENT STATE HOUSES ACROSS
THE COUNTRY MEETING WITH
LEGISLATORS PROVIDING TESTIMONY.
MANY TYPES IN THE SAME STATE
WHERE YOU HAVE SOME CRYING
EMOTIONAL.
I'VE BEEN A PALETTE TO CARE
CONFERENCES THEY'VE ASKED ME TO
SHARE BRITNEY STORIES LISTENING
TO THE PHYSICIANS TODAY. ARE AS
FAR AS THIS DECIPHERED OF OF
IMPLEMENTATION OF EDUCATION.
.
I SHUT THE REALITY THE
SAFEGUARDS THAT ARE AT THE.
IN THIS PROGRAM A FROM
EDUCATION STANDPOINT BECAUSE
THAT WAS BROUGHT UP EARLIER
BRITAIN IS NOW IN TWO TEXTBOOKS.
THANK YOU.
AS WELL AS.
AS WELL AS WELL AS.
AND. AN ONLINE COURSES WELL SO
IN THAT REGARD I CONTINUE TO DO.
.
EVERYTHING.
THAT I CAN IN ORDER TO.
IN ORDER FOR THE GENERAL PUBLIC
TO HAVE AN UNDERSTANDING.
OF WHAT ARE.
MEDICAL AID IN DYING IN HIS.
.
ASSEMBLYMEMBER LEVINE BROUGHT UP
THE STORY OF HIS AUNT.
AND I JUST LIKE TO
SHARE THAT. THE HOPE.
IS THAT YOU ON'T HAVE TO USE
THE MEDICATION THE HOPE IS
ALWAYS YOU FOCUS ON LIVING LIFE.
THAT YOU SIMPLY HAVE THAT YOU
SIMPLY HAVE THIS.
AS.
.
AS A LAST RESORT.
ASSEMBLY MEMBER QUIRK WHO ASKED
AS FAR AS A SECRET BARBARA TALL
WHITE IS A COST THREE TO FIVE
THOUSAND DOLLARS YES WHEN
BRITNEY AND I AND THIS WAS JUST
IN TWO THOUSAND FOURTEEN.
WE RECEIVE THIS MEDICATION IT
WAS FIFTEEN HUNDRED DOLLARS ONLY
A FEW YEARS BEFORE THAT IT WAS
FOUR HUNDRED DOLLARS.
SO IT IS SICK BARBATOS BEEN
AROUND FOR OVER EIGHTY YEARS.
THE ARE AND DE THE RESEARCH AND
DEVELOPMENT THE PAY BACK FOR
THAT MANUFACTURE HAS LONG SINCE
BEEN SETTLED IT IS TRULY JUST
PRICE GOUGING.
THAT'S TAKING.
THAT THAT'S GOING ON NOW.
SO WITH THAT.
THANK YOU AGAIN TO.
THE LEGISLATORS HERE.
AND.
THE IMPACT THAT THIS HAS HAD
AS WAS
BROUGHT UP EARLIER IS THAT IT
HAS ENCOURAGED.
CONVERSATIONS ABOUT AND OF LIFE
MORE SO THAN JUST MEDICAL AID
DYING.
THE FACT THAT A HUNDRED ELEVEN
INDIVIDUALS UTILIZE THIS.
.
THAT AFFORDED THEM A GENTLE
DYING PROCESS BUT THE REAL
BENEFIT.
AND AND WE'VE HEARD REPORTED
OVER AND OVER THE LA TIMES WORDS
WROTE A STORY ON IT.
OR THAT PEOPLE ARE HAVING THESE
CONVERSATIONS AND IT'S NOT A
SCARY THING ANYMORE.
WE CAN TALK ABOUT THE STUFF WE
SHOULD BE TALKING ABOUT.
THANK YOU VERY MUCH KITCHEN
TABLE CONVERSATIONS WILL NEED TO
HAVE A. THANK YOU SO MUCH AND.
AS A AS A LATINO ES.
THINKING ABOUT DEATH RATE YOU
INDOCTRINATED INTO THE LAST
PERSON DOESN'T MENTION YOUR NAME
SO. CLEARLY PRETTY WILL LIVE ON
FOREVER THANK.
BOB.
MADAM CHAIR MEMBERS OF THE
COMMITTEE. UP THANK YOU VERY
MUCH FOR THE OPPORTUNITY TO
SPEAK WITH YOU TODAY MY NAME IS
BARBARA CAME A I'M THE DIRECTOR
OF THE BIOETHICS PROGRAM AT THE
UNIVERSITY OF CALIFORNIA SAN
FRANCISCO.
AND WERE. AT THE POINT WHEN.
THOUGH THE LAW WAS SIGNED.
WE'VE WE BELIEVED THAT IT WAS
IMPORTANT FOR SOMEONE TO STEP
FORWARD AND OF BE TO SERVE A
CONVENING FUNCTION. FOR THE
ACADEMIC HEALTH SCIENCE CENTER
AND THE ETHICS COMMUNITIES
ACROSS THE STATE AND SO. THAT
YOU CASF WITH THE ASSISTANCE OF
ONE OF MY COLLEAGUES LINDSAY
FORBES WHO'S HERE.
WE STEP FORWARD AND STARTED
TRYING TO FIGURE OUT
WHAT WOULD BE A GOOD WAY OF
GETTING PEOPLE ON THE STATE
TOGETHER.
AND I SHOULD SAY THAT I THINK
THE TESTIMONY PRETTY THIS
MORNING HAS SHOWN THAT THIS IS
NOT AN EASY THING TO IMPLEMENT.
SO IT'S IT'S USEFUL FOR US TO
GET TOGETHER AND SHARE
EXPERIENCE BUT IT HAS NOT BEEN
EASY.
SO I WANT TELL YOU VERY BRIEFLY
ABOUT
A A PROJECT THAT WE'VE DONE.
IN COLLABORATION WITH UCLA AND
THE COALITION TO ADVANCE
COMPASSIONATE CARING CALIFORNIA.
WITH FUNDING FROM THE STEPS KEY
FOUNDATION AND THE CALIFORNIA
HEALTHCARE FOUNDATION.
SO WE HAVE DONE WITH A THREE
PART PROJECT WHICH INVOLVED
CONVENING KEY STAKEHOLDERS FROM
AROUND THE STATE WHICH INCLUDES
AN INCLUDING PATIENTS.
.
DOING THE SURVEY THE DOCTOR CAME
MENTIONED EARLIER AND DOCTOR
WINGER.
AND ALSO DOING A PROJECT TO
COLLECT THE NARRATIVES OF
PATIENTS
AND A LOT THIS IS ON THE THEME
THAT.
ASSEMBLY.
MEMBER EGGMAN HAS TALKED ABOUT
ABOUT THE ISSUE OF DATA SO WE WE
NEED A LOT MORE DATA ABOUT ALL
OF THE THE INDIVIDUALS WHO MAKE
USE OF THE ACT IN TERMS OF THE
IMPACT AND I'LL SAY MORE ABOUT
THAT IN A MOMENT. BUT WE ALSO
NEED THE SORT OF IN DEPTH
NARRATIVE DATA THAT WE GET FROM
FROM PATIENTS AND FAMILIES WHO
STEP FORWARD AT HEARINGS LIKE
THIS.
BUT ALSO WE WANTED TO MAKE A
LITTLE BROADER BY SYSTEMATICALLY
OF REACHING OUT. AND MAKING
AVAILABLE PARTICIPATION IN THE
STUDY OUR GOAL IN THIS PROJECT
IS TO COLLECT TWENTY DETAILED
NARRATIVES.
.
SORRY INCLUDING.
.
A PATIENT HIM OR HERSELF
A FAMILY MEMBER AS WELL AS OF
THAT AS WELL AS A CLINICIAN
INVOLVED WITH THE SITUATION SO
THAT PROJECT IS IN. PROCESS BUT
IT WILL BE A RESOURCE I THINK
FOR YOUR COMMITTEE AS WE MOVE
FORWARD ONCE WE START A DOING
THAT DATA ANALYSIS.
I WANT TO GIVE YOU ONE EXAMPLE
OF THE KIND OF INFORMATION THAT
CAN COME FROM THIS KIND OF
QUALITATIVE STUDY.
WHICH MIGHT NOT COME UP IN
ANOTHER WAY.
AND SO WE'VE HEARD A LOT ABOUT
THE ISSUE OF TIMING AND HOW HARD
IT IS TO GET THE PROCESS STARTED
IT CETERA.
AND ONE OF THE THINGS THAT WE
DISCOVERED WAS JUST AT A SMALL
THING BUT I THINK AN IMPORTANT
THING.
THERE CAN BE A COMPLETE MISMATCH
BETWEEN WHETHER A PATIENT THINKS
THAT THEY'VE MADE A REQUEST.
ABOUT PHYSICIAN AID IN DYING AS
OPPOSED TO WHAT. THE HEALTH CARE
SYSTEM HAS HEARD WHAT AN
INDIVIDUAL CLINICIAN HAS HEARD
OR WHAT A HEALTH CARE SYSTEM IS
PREPARED TO HEAR. BECAUSE ON THE
HEALTH CARE SYSTEM PART THIS IS
A VERY FORMAL THING IN S. B.
MEMORIALIZED UNDOCUMENTED. BUT
THE PATIENT SOMETIMES GET OUT OF
WHACK IN TERMS OF THE TIMING
BECAUSE. THEY WILL SAY WELL BUT
I I RAISE THAT TWO MONTHS AGO
WITH MY ONCOLOGIST I YOU KNOW I
SAID THAT I WANTED TO DO THIS.
WHY ARE YOU NOT HEARING ME ARE
LISTENING TO ME SO THAT JUST ONE
EXAMPLE I WANT TO?
?
BUT.
I THINK I'M NOT IN THE INTEREST
OF TIME I THINK I WAS GOING TO
READ SOME INTERESTING QUOTES YOU
OF THAT PEOPLE'S REASONS FOR
DOING THIS WHICH ARE VERY.
INTERESTING PERHAPS I COULD JUST
SUMMARIZE BY SAYING YOU KNOW WE
WORRY.
ONE OF THE FUNCTIONS OF MY TEAM
IN PARTICULAR MY GROUP HAS BEEN
TO GET PEOPLE WHO'VE BEEN
HISTORICALLY OPPOSED TO THESE
PRACTICES TO WORK TOGETHER WITH
INDIVIDUALS HAVE BEEN PROP
PROPONENTS.
AT THIS PARTICULAR MOMENT WHEN
IT'S NOW THE LAW AND IT'S SO
IMPORTANT TO GET THIS RIGHT IN
TERMS OF AND OF LIFE CARE.
ALTOGETHER IN CALIFORNIA.
AND AND SO IN IN TRYING TO DO
THAT.
WE. ARE I WOULD ARGUE AND I
THINK MOST PEOPLE WOULD ARGUE
YOU WE DON'T WANT THIS TO BE
PRACTICE FOR THE WRONG REASONS
MEANING LACK OF ACCESS TO PAY
THAT YOU CARE. UP OF OF HOPELESS
LIKE AND POVERTY IT CETERA. I'M
SO THE REASONS ARE VERY VERY
IMPORTANT AND WHAT WE'RE HEARING
IS AND I JUST WANT TO SUMMARIZE
ONE ONE.
PATIENT ACTUALLY SAID TO US.
ALL I WANT IS TO BE FREE OF THIS
BODY.
THEY WERE JUST LITERALLY AT THE
END AND THAT WAS ALL THEY COULD.
UNDERSTAND THAT THAT WAS THAT
WAS WHERE THEY WERE.
.
SO I ALSO WANT TO.
I SHOULD ALSO POINT OUT IT IS
HERE.
REALLY INVOLVED
PATIENTS AND FAMILIES WHO HAVE
CHOSEN TO MAKE USE OF SOME OF
THE SPECIALTY PRACTICES ON THAT.
ARE AT THAT HAVE DEVELOPED IN
THE STATE TO IMPLEMENT THE THE
LAW. AND SO WE ALSO HAVE SOME OF
THAT INFORMATION AND WE CAN. WE.
WILL WE'RE FOLLOWING THE STORIES
OF WHAT ARE THE BARRIERS IN
INDIVIDUAL HEALTH CARE SYSTEMS
WHETHER THE ENABLERS.
WHY DO PEOPLE CHOOSE TO GO OUT
OF THEIR OWN HEALTH CARE SYSTEM
AND TO GO ELSEWHERE? AND ALL
THOSE THINGS I THINK ARE GOING
TO BE VERY HELPFUL.
.
AND FINALLY I'LL SAY THAT
ACROSS THE STATE.
.
WE DID CONVENE A MEETING WE
CONVENE TO MEETINGS ACTUALLY ONE
FOR PLANNING WHICH ASSEMBLY MEN
ACT EGGMAN DID ATTEND. AND THEN
IN SEPTEMBER WE GOT A HUNDRED
AND TEN INDIVIDUALS FROM AROUND
CALIFORNIA TOGETHER. OUGHT TO
THINK ABOUT POLICY AND OUR GROUP
AT UCSF WILL BE ALL THAT IS
AND WE ALSO WILL BE AVAILABLE
AS MANY POLICIES AND PROCEDURES
AND BEST PRACTICES THAT WE HAVE.
COLLECTED FROM AROUND THE STATE
THAT WILL ALL BE MADE AVAILABLE
ON A WEBSITE AT THE CALIFORNIA
COALITION AND ALSO AT UCSF SO
HOPEFULLY THAT WILL BE AND.
AN OPPORTUNITY AS YOU MOVE
FORWARD.
I THINK IN ON THE DATA ISSUE I
WANT TO EMPHASIZE ONE ISSUE THAT
I THINK IS VERY SPECIFIC AND
VERY IMPORTANT. AND THAT IS THAT
WE DON'T HAVE GOOD DATA ABOUT
THE RANGE OF DIVERSITY. UP OF
THE INDIVIDUALS WHO MAKE USE OF
THE ACT AND THAT'S PARTLY I
THINK BECAUSE OF A AND THAT OF A
PROBLEM IN THE WAY THAT THAT
DATA IS BEING IT IS IS BEING
OBTAINED AT THIS PUNK MOMENT.
AND IT'S BEING OBTAINED BY
LOOKING AT THE DEATH
CERTIFICATE.
AND
I JUST WANT TO POINT OUT THAT
LOOKING AT A DEATH CERTIFICATE
IS NOT A GOOD WAY TO ASCERTAIN
SOMEONE SELF IDENTITY YOUR
UNDERSTANDING OF THEIR OWN.
.
ETHNICITY EXPERIENCE IT CETERA.
THIS SO I THINK THAT'S
A VERY SPECIFIC MODIFICATION
THAT SHOULD BE CONSIDERED AND
OUR GROUP WAS ACTUALLY SENT. A
WRITTEN TEST AND YOU KNOW
WRITTEN INFORMATION TO THE
STATE.
OUGHT TO THE DEPARTMENT AND THAT
IS IT RESPONSIBLE FOR COLLECTING
THIS DATA.
SO WILL CONTINUE THIS EFFORT OF
GETTING PEOPLE TOGETHER AROUND
THE STATE MAKING RESOURCES
AVAILABLE.
ARE ALSO A NUMBER OF US FROM
THAT PROJECT ARE GOING TO
WASHINGTON NEXT MONTH OF BECAUSE
THE OF THE NATIONAL ACADEMY OF
MEDICINE HAS CONVENED WITH
FUNDING FROM ANOTHER FOUNDATION.
OF A TWO DAY MEETING THAT WILL
LET US. HELP IT SURE THE
CALIFORNIA EXPERIENCE MORE
BROADLY SO THANK YOU VERY MUCH
FOR THE OPPORTUNITY OF.
OF BEING HERE TODAY AND HAPPY
TO ANSWER ANY QUESTIONS.
THANK YOU VERY MUCH JOHN AND
MIKE I DISCLOSES LESSEN MY JUST
LIKE TO SAY IT AT THE TIME A
RESEARCH. IN AND DR COHN'S WORK
IS SOME OF WHAT I USE WHEN I WAS
ON MY DISSERTATION WE MET FOR
THE FIRST TIME IN SAN FRANCISCO
SO I'LL FEEL SO FULL CIRCLE.
.
WE'VE CAP WESTON ASK AND THEN
RIGHT HE MASINI.
SO GOOD MORNING CHAIR GOOD
MORNING SMITTY MEMBERS MY NAME
IS KAT WEST I AM THE NATIONAL
DIRECTOR OF POLICY AND PROGRAMS
FOR COMPASSION CHOICES. AND
COMPASSIONATE CHOICES IS THE
LARGEST AND OLDEST NONPROFIT
ORGANIZATION IN THE NATION
WORKING TO IMPROVE CARE AND
EXPAND CHOICE AT THE END OF
LIFE.
TO HELP WITH SAFE AND
SUCCESSFUL IMPLEMENTATION OF THE
ACT.
COMPASSIONATE CHOICES LAUNCHED
WHAT IS CALLED THE CALIFORNIA
ACCESS CAMPAIGN.
AND IT WAS A MASSIVE BILINGUAL
EFFORT TO EDUCATE THE PUBLIC.
A DOCTOR'S MEDICAL PROVIDERS OF
PHARMACISTS INSURANCE COMPANIES
ACROSS THE STATE.
WE HAVE LITERALLY TALKED TO OVER
A THOUSAND.
MEDICAL PROVIDERS DOCTORS
PRACTITIONERS AS WELL AS
TERMINALLY ILL PEOPLE AND THEIR
FAMILIES WE PROVIDED EDUCATION
AND SUPPORT TO THEM.
JUST FOR EGGS AN EXAMPLE A WE
HAVE A DOCK TO DOCK
CONSULTATION LINE WHICH IS A
FREE.
PHONE LINE THAT ANY DOCTOR IN
CALIFORNIA OR THE OTHER OFF ANY
OF THE STATE'S. CAN CALL TO
SPEAK WITH ONE OF OUR NATIONAL
MEDICAL DIRECTORS IN OREGON WHO
HAS EXTENSIVE EXPERIENCE WITH
MEDICAL AID IN DYING WE ALSO
HAVE A PHARMACIST A PHARMACIST
LINE. WHICH IS VERY SIMILAR.
WE'VE BEEN PARTNERING WITH
HOSPITALS HEALTH SYSTEMS
HOSPICES OF MEDICAL ASSOCIATIONS
AND WE'VE ALSO BEEN PARTNER IN
WITH GROUPS SUCH AS THE
PROMONTORIES. LATINO COMMUNITY
HEALTH WORKERS.
TO ADDRESS THE EXACT ISSUES
THAT WE HEARD ABOUT HEALTHCARE
DISPARITIES EARLIER.
I THINK EVERYONE AGREES THAT
RIGHT NOW WE ARE IN THE RAMP UP
PERIOD OF IMPLEMENTATION.
AND THAT EACH YEAR. ACCESS TO
THE LAW WILL GET BETTER AND
BETTER AS HEALTH CARE CONSUMERS
BECOME EMPOWERED. AROUND THE
LONG AND AROUND HEALTH CARE AS
HEALTH SYSTEMS SEEK TO IMPROVE.
THEIR SYSTEMS BOMB AND AS
DOCTORS BECOME EDUCATED AND MORE
COMFORTABLE WITH THE LAW.
IN FACT THE NUMBER ONE THING
THAT WE'VE HEARD FROM PATIENT
AND DOCTOR EXPERIENCE.
IS THAT THERE ARE SOME DOCTORS
WHO FEEL STRONGLY ABOUT THIS.
THEY KNOW RIGHT AWAY HOW THEY
FEEL BUT THE MOST DOCTORS.
DON'T KNOW HOW THEY FEEL THEY
HAVEN'T THOUGHT ABOUT IT UNTIL
THEIR FIRST PATIENT ASKS.
AND THEN IT BECOMES A REAL TO
THEM AND THEY HAVE THAT
CONNECTION WITH THAT THE SACRED
PATIENT DOCTOR RELATIONSHIP.
BECOMES REAL TO THEM AND THEN
THEY DECIDE YES I'M GONNA HELP
MY PATIENT BECAUSE THIS IS WHAT
MY PATIENT WANTS THIS IS PATIENT
DIRECTED CARE.
SO EVERY YEAR IS GOING TO GET
BETTER AND BETTER PHAM SAID LIKE
TO SHARE FOUR MAIN TAKEAWAYS.
FIRST THE LAWS WORKING AS
INTENDED.
OFF FROM OUR CONVERSATIONS WITH
PATIENTS AND DOCTORS AND
HOSPICES WE BELIEVE
APPROXIMATELY FIVE HUNDRED.
TERMINALLY ILL PEOPLE HAVE
RECEIVED PRESCRIPTIONS.
IN CALIFORNIA AND THE FIRST
YEAR.
UP THE NUMBER ONE FRUSTRATION
THAT WE HEAR FROM PATIENTS OF
FAMILY MEMBERS IS THE PROCESS IS
TOO BURDENSOME.
THE PAPER THERE'S TOO MUCH
PAPERWORK.
THERE'S JUST THE WAITING PERIOD
IS TOO LONG IT JUST TAKES TOO
LONG IT'S TOO MANY HOOPS TO JUMP
THROUGH.
THESE PATIENTS.
THEY'RE DYING THEY DON'T HAVE A
LOT OF TIME THEY DON'T WANT TO
SPEND SPEND THEIR PRECIOUS.
TIME TRYING TO.
JUMP THROUGH ALL THESE HOOPS
THEY WANT TO SPEND IT WITH OUR
FAMILIES AND SO I I JUST URGE
YOU TO KEEP THAT IN MIND.
AS WE GO FORWARD AND WE IMPROVE
OUR PROCESSES.
SECONDS
PATIENTS ARE REPORTING FEELING
VERY EMPOWERED AROUND THE LAW.
THEY'RE HAVING IN DEPTH
CONVERSATIONS WE'VE HEARD THIS
OVER AND OVER AGAIN IS IT IS THE
THEME. THEY ARE HAVE IT'S THE
EXCUSE FOR THEM TO FINALLY TALK
TO THEIR DOCTORS ABOUT WHAT THEY
REALLY WANT AND DOCTORS
REPORTING THE SAME THING.
IT'S REALLY TRANSFORMING THE
END OF LIFE EXPERIENCE.
FOR PATIENTS.
A THIRD BY OUR COUNT.
EIGHTY FOUR.
EIGHTY FOUR PERCENT OF SECULAR
HEALTH SYSTEMS IN CALIFORNIA NOW
HAVE POLICY SUPPORT OF A PATIENT
AND OF LIFE CARE THAT'S
PHENOMENAL. IT TOOK OREGON
TWENTY YEARS TO GET TO WHERE
CRAP CALIFORNIA MADE IN ONE
YEAR.
SO THAT TRANSLATES TO OVER FIVE
HUNDRED HEALTH CARE FACILITIES
AND OVER A HUNDRED HOSPICE
LOCATIONS.
ON THE GROUND ACROSS THE STATE.
I'D LIKE TO HIGHLIGHT THAT
SEVERAL HEALTH CARE SYSTEMS OF
NOT ONLY ADOPTED SUPPORT OF
POLICIES BUT THEY HAVE
IMPLEMENTED THE INTERNAL
REFERRAL IMPATIENT NAVIGATOR
SYSTEMS THAT YOU HEARD KAISER
AND UC DAVIS TALK ABOUT TODAY.
THAT IS THE GOLD STANDARD.
WE WERE REALLY URGE ALL HELL
SYSTEMS TO GO TOWARDS THAT
SYSTEM IT IT GUY IT.
IT JUST INCREASES THE PATIENT
SATISFACTION X. M. EXPERIENCE
AND WE HAVE FOUND THAT IT ALSO
HELPS GREATLY WITH HEALTHCARE
DISPARITY.
BECAUSE THE MORE SUPPORTIVE A
SYSTEM IS OF THE MORE THAT
PEOPLE WHO. ARE HISTORICALLY
HAVE NOT GOTTEN GOOD HEALTH CARE
WILL GET ACCESS TO THIS LAW.
I FOURTH.
UNFORTUNATELY SOME HOSPITALS AND
HOSPICES ARE STILL PROHIBITING
THEIR DOCTORS FROM PRESCRIBING
UNDER THE LAW.
AND I'VE GOT GOOD NEWS THOUGH.
OF WE HEARD EARLIER ABOUT.
PEOPLE ARE ASKING FOR SOME SORT
OF REPOSITORY OF HEALTH CARE
SYSTEMS THAT HAVE THESE SUPPORT
OF POLICIES.
WE HAVE CREATED AN ONLINE FIND
CARE TOOL WHICH IS PUBLICLY
AVAILABLE ON OUR WEBSITE IT'S
ONE OF OUR MOST HEAVILY VISITED
A WEB PAGES THAT WE HAVE. IT
IT'S AN UP TO DATE LIST OF
HOSPITALS CLINICS AND HOSPICES
THAT HAVE ADOPTED POLICIES WE
HAD MORE FACILITIES EVERY MONTH.
AND.
IT IS A VERY VERY USEFUL TOOL.
FOR RESIDENTS.
SO IN CLOSING WE HEAR FROM
TERMINALLY ILL PEOPLE AND THEIR
HEALTH CARE TEAMS EVERY WEEK WHO
ARE FILLED WITH GRATITUDE.
THAT THEY HAVE THE OPTION OF
MEDICAL AID IN DYING. WHICH
ALLOWS THEM TO LIVE THEIR
REMAINING DAYS TO THE FULLEST
KNOWING WITH PEACE OF MIND.
THAT THEY CAN CHOOSE A PEACEFUL
DEATH IF THEY'RE SUFFERING
BECOMES UNBEARABLE.
AND I'D LIKE TO THANK ALL THE
FAMILY MEMBERS AND ALL THE
PROVIDERS THAT ARE HERE TODAY.
AND THANK ASSEMBLY MEMBER EGGMAN
SENATOR MINING AND SENATOR WALK.
FOR YOUR COURAGE AND YOUR
COMMITMENT TO THE END OF THE
LIFE. END OF LIFE OPTION I THINK
YOU.
THANK YOU VERY MUCH AND AGAIN
THANK YOU TO COMPASSION CHOICES
FOR ALL THE WORK THEY'VE DONE.
IF SMOKING MAY GO SPACE NEXT UP
WE HAVE MISTER. OF.
FOR HE MYCENAE.
THE REPORTER.
AND HIS ALSO HAD A PERSONAL
EXPERIENCE SO PUBLIC MANY OF YOU
LIKE ME HAVE. BRED.
READ ABOUT HIS MOTHER'S
EXPERIENCE AND HIS EXPERIENCE
A MORNING OF MARKETS A AFTERNOON
ACTUALLY I THANKS FOR CONVENING
THIS PANEL.
I'M A HAMER SE ANY.
JOURNALIST BY TRADE.
BUT I'M HERE'S A SIGN AND.
THOSE TWO ASPECTS ACTUALLY
COMBINED.
LAST YEAR WHEN I WROTE A STORY
THE.
YOU MENTIONED ABOUT MY MOM'S.
.
INABILITY TO ACCESS A THE AID IN
DYING MEDICATION.
.
FAT DESPITE.
BEING ELIGIBLE FOR EIGHT AND
HAVING THE FULL SUPPORT. OF HER
DOCTORS HOSPICE CARE PROVIDERS
AND HER FAMILY.
.
AND I WOULD YOU KNOW I WAS
THINKING A LOT ABOUT WHAT I
WANTED TO.
TELL YOU GUYS ABOUT MY MOM.
AND SO I I THOUGHT I'D DROP IN
JUST LIKE A FEW LITTLE TIDBITS
AT SOMEONE AND GROWING UP BUT
SHE WAS. YOU KNOW SHE SHE FIRST
THOUGHT USE UNDENIABLY CHAIRMAN.
SHE DID NOT.
CARE TO DRIVE ON THE FREEWAY.
SHE WAS A TEACHER PRESCHOOL
KINDERGARTEN TEACHER AND STARTED
DOWN BUSINESS. AND NEVER TALKED.
TO HER STUDENTS AND SO THEY HAD
TO ORDER AND LOOKED UP TO HER
FOR THAT.
SHE CHEATED AT SPADES.
SHE WAS NOT A DRINKER BUT YOU
CAN POLISH OFF A BOTTLE OF GOOD
SHOPS.
.
AND SHE SHE COULD BE LATE TO
THINGS BUT SHE WAS ALWAYS AHEAD
OF HER TIME.
AND I THINK THAT WAS THE CASE
HERE SHE WAS I HAD EVER TIME AND
THIS AND SOCIETY SIMPLY HADN'T
CAUGHT UP TO WHERE SHE WAS.
WHEN SHE GOT.
HER DIAGNOSIS IN NINETEEN NINETY
FOUR IS A REALLY SCARY I SHE'S
DIAGNOSED WITH MULTIPLE MYELOMA
WE HAD NEVER HEARD OF IT BEFORE.
I DID WHAT ANY TEAM LOVING
TEENAGE SON WOULD DO WHICH IS I
LOOKED AT WHICH CELEBRITIES HAD
THIS DISEASE BECAUSE THAT TELLS
YOU. YOU KNOW IF IT WHETHER IT'S
LIKE WRITTEN TRULY PENETRATED.
SOCIETY.
THE ONLY ONE I COULD FIND WAS
ROY SCHEIDER SO THAT TO ME WAS A
RARE DISEASE.
.
AND SHE OVER THE NEXT TWENTY TWO
YEARS THAT THE PROGNOSIS WAS NOT
GREAT THEY TOLD HER SHE HAD.
IF SHE WAS LUCKY FEW YEARS FIVE
YEARS.
AND THEY.
RECOMMENDED THAT SHE STARRED
AGGRESSIVE CHEMOTHERAPY THAT WAS
NOT HAPPENING THAT WITHOUT MY
MOM. SO OVER THE NEXT TWENTY TWO
YEARS SHE BATTLED IT HER WAY.
THROUGH A STRICT REGIMEN OF.
HOLISTIC REMEDIES AND NATURAL
DIETS THAT HER HER FAMILY WASN'T
ALWAYS ON BOARD WITH BUT I MEAN
SHE DID IT HER WAY.
AND.
FOR HER IT WAS MORE IMPORTANT
TO LIVE AS HERSELF
THEN MERELY SURVIVE AT SOMEONE
ELSE
AND THAT THAT EXTENDED TO.
HOW SHE SAW AND WANTED TO
CONFRONT HER OWN DEATH AS WELL?
AND SO YEARS BEFORE ON.
CALIFORNIANS AND OF LIFE ACT TOM
CAME INTO PLAY SHE WAS TALKING
ABOUT HER DESIRE TO WHEN THE
TIME CAME.
TAKE AGENCY OVER THE LAST THING
SHE WOULD EVER DO IN THIS WORLD.
AND SO SHE LOOKED AT THE OTHER
STATES WHERE.
THAT HAD ADOPTED DEATH WITH
DIGNITY ACTS DIFFERENT COUNTRIES
SHE THOUGHT ABOUT.
YOU KNOW MOVING TO IT TO SOME
OF THE STATES OR COUNTRIES BUT
CALIFORNIA WAS OUR HOME AND YOU
DON'T WANT TO LOOK LEVER HOME.
SO WHEN THIS LAW WAS PASSED IT
WAS A GREAT RELIEF TO HER
AND WHEN SHE.
ON MY DAD MYSELF AND SHE MET
WITH THE ONCOLOGIST AND GOT THE
NEWS THAT SHE HAD MONTHS LEFT TO
LIVE.
BUT THE FIRST QUESTION SHE ASKED
WAS ABOUT OKAY HOW DO I DO THE
SAME TIME THING.
.
AND LIKE AND.
I THINK A LOT OF THE STUMBLES
THAT HAPPENED OUR PART OF THE
RAMP UP THAT WERE DESCRIBED.
OTHERS.
.
YOU KNOW THERE WAS TROUBLE JUST
GETTING BASIC PAPERWORK YOU KNOW
LIKE WE WERE TOLD IT HAD BEEN
MAILED TO OUR HOUSE. EVEN THOUGH
THERE IS A WHEN YOU COULD ACCESS
ONLINE OF THEM YOU KNOW IT IT
FELT LIKE DIFFERENT ASSISTANCE
THEN MAIL IT TO SOMEONE HAD TO
DRIVE IT OUT TO US THINGS LIKE
THAT AND THAT WERE.
.
BUT AVOIDABLE BUT.
IT'S NOT.
MORTAL SINS IN THE LAW OUR
MORTAL FLAWS.
.
SO BUT THERE WERE OTHER ISSUES
LIKE THE HOSPICE CARE PROVIDER
AND THE HEALTH CARE PROVIDER
INITIALLY CAN DECIDE WHOSE
RESPONSIBILITY IT WAS TO TAKE IT
TO THE NEXT PHASE.
.
THEN FINDING EVEN HER ONCOLOGIST
WAS ON BOARD TO DO THE ONE OF
THAT NECESSARY CONSULTATIONS BUT
FINDING THAT OTHER DOCTOR.
PROVED DIFFICULT AND TIMELY AND
IT WAS TIME THAT MY MOM RAPIDLY
DO NOT HAVE AND.
ONCE A DOCTOR WAS FOUND THEN IT
WAS A DISCUSSION ABOUT COULD WE
HAVE THIS PERSON DO A HOME VISIT
BECAUSE MY MOM WAS TOO WEAK TO
LEAVE.
HER HOME AND THEN THAT ENSUED
MULTIPLE CONVERSATIONS ABOUT
WHAT CONSTITUTED BATTERY.
AND SO THAT WAS DIFFICULT.
.
AND SO FINALLY WHEN THE DOCTOR
CAME IN HE WAS GREAT I MEAN HE'S
COMPASSIONATE KIND PATIENT AND
IN ANOTHER THIS IS A REFLECTION
OF THE PHYSICIANS THE HOSPICE
CARE WORKERS. ALL OF THEM WERE
PHENOMENAL IF IT'S JUST ABOUT
THE.
OBSTACLES THAT WERE BUILT INTO
THE SYSTEM.
.
BY THE TIME HE SHOWED UP HER
HOUSE SHE CAN NO LONGER
PARTICIPATE IN A MEANINGFUL WAY
IN THIS INTERVIEW SHE COULD SAY.
I AM DYING I HAVE THIS CANCER I
WANT THIS EIGHTEEN DOWN AYE
MEDICATION BECAUSE I DON'T WANT
TO BE IN PAIN BUT THERE WAS A
WHOLE LIST OF OTHER QUESTIONS
THAT SHE CAN ANSWER. PART NOT TO
HIS STANDARD BUT TO THE LOS
STANDARD.
AND SO SHE WASN'T ABLE TO TAKE
ADVANTAGE OF THIS AND.
.
THAT WAS.
REALLY DIFFICULT BECAUSE I THINK
MORE THAN ANYTHING SHE LIKE
OTHERS AT THIS PANEL AND TODAY
HAVE SAID SHE JUST WANTED THE
OPTION.
SHE WON THE CHOICE.
.
AND I THINK THE LAST THING I'LL
SAY ABOUT MY MOM IS.
.
SHE YOU KNOW WHO I BEFORE I WAS
AROUND.
IN ADDITION SHE GREW UP IN
GERMANY POST WAR POVERTY SHE WAS
AND IMMIGRANTS USES
SINGLE WORKING MOM WHEN THAT WAS
TABOO.
SHE WAS A PRO CHOICE ADVOCATE
BEFORE ROE V. WADE. SHE WAS
ALWAYS KIND OF PUSHING THESE
BOUNDARIES AND NOT SO MUCH AS.
JUST.
THROUGH ACTION CENTER LIFE AND
HER LIVED EXPERIENCE.
AND WHEN THE WORLD LETTER DOWN
IT WAS BECAUSE IT WASN'T AS
COMPASSIONATE OR FORWARD
THINKING OR BRAVE AS SHE WAS.
AND THIS CALIFORNIA WAS OUR HOME
AND. IF.
WE CAN TAKE.
FOR THIS PANEL CAN TAKE
ANYTHING FROM HER.
MAYBE JUST.
THAT LOOK TO HER AS A LITTLE BIT
OF AN EXAMPLE AND TRY TO. YOU
KNOW PUSH THIS.
I'LL LA LITTLE BIT FORD AND AND
THE LAST THING I TASTE SHE'S NOT
COUNTED. IN THE RECENT STATE
PUBLIC HEALTH DEPARTMENT REPORT
AND HAVE TALKED OTHER FAMILIES
WHOSE LOVED ONES. ARE NOT
COUNTED.
AND I THINK YOU CAN'T HAVE HER
NO.
HOW GOAL LAW IS WORKING OR NOT
WORKING UNLESS YOU COUNT
EVERYONE
SEC THANK YOU?
THANK YOU VERY MUCH ANYMORE VERY
SORRY FOR YOUR LOSS AND YEAH I
THINK YOUR MOM WAS S. PIONEER
WHO WAS ONE OF THE FIRST ONE TO
TRY TO ACCESS IT IN AND HIT ALL
THE. ROAD BLOCKS AND I THINK THE
SYSTEMS HEALTHCARE SYSTEMS HAVE
TRIED TO ADDRESS SINCE SO. SO
SHE WAS THE LEADER AND THE
SYSTEMS ARE COMING ALONG BEHIND
HER THANK YOU.
THANK YOU VERY MUCH.
OKAY.
NEXT UP WE HAVE BY KELLY DAVIS.
SOME.
EMINEM IS KELLY DAVIDSON NAM
THANK YOU FOR ALLOWING ME TO
SHARE THE STORY OF MY SISTER
BETTY DAVIS.
I AM ALSO A JOURNALIST AND AND
WROTE ABOUT BETSY'S.
EXPERIENCE USING THE END OF
LIFE OPTION ACT AND.
AND ONE THING SHE REALLY HOPE
SHORTLY BEFORE SHE DIED IS THAT
SHE COULD BE AN EXAMPLE OF HOW
THIS LAW.
COULD HELP PEOPLE AND SO
HOPEFULLY IT. SHE'S I'VE WHO
APPEARS TODAY OUT OF IT AT FOUR
THIRTY. THE TO GET AN EARLY
FLIGHT FROM SAN DIEGO SO
HOPEFULLY SHE'S
SHE IS PROUD OF ME FOR DOING
THAT.
JUST TELL YOU A LITTLE BIT
ABOUT BETSY SHE WAS A REMARKABLE
PERSON.
BUT SHE WAS A TALENTED
INNOVATIVE ARTISTS USE A WORLD
TRAVELER SHE WAS A STRONG
INDEPENDENT WOMAN. AND SHE HAD A
KILLER SENSE A HUMOR.
SHE'S VERY SILLY SHE'S STILL TO
THIS DAY HOLDS A WORLD'S RECORD
FOR DRAWING THE MOST PORTRAITS
WITH
CAN OF WHIPPED CREAM. IF YOU
DON'T BELIEVE ME HER WHERE HER
WEBSITE WITH THEIR ART IS A
QUEEN OF PLASTICS DOT COM AND
THERE'S A VIDEO OF HER AND
SETTING A WORLD RECORD.
IN TWENTY EIGHT AND JULY TWENTY
THIRTEEN BETSY WAS DIAGNOSED
WITH A LS.
AND I CAN'T IMAGINE A COOLER
DISEASE IT SLOWLY ROBS THE
PERSON OF THE ABILITY TO MOVE
SPEAK EAT AND EVENTUALLY
BREATHES AND CURRENTLY THERE IS
NO EFFECTIVE TREATMENT.
AND AFTER HER DIAGNOSIS SHE MADE
THE MOST OF EVERY MINUTE OF
EVERY DAY BUT SHE INCREASINGLY
LUSTER INDEPENDENCE.
IN THE MONTHS BEFORE SHE DIED I
WATCHED HER STRUGGLE TO EAT AND
SPEAK.
AND DO SIMPLE THINGS LIKE
SCRATCHING AN ITCH OR BRUSH A
STRAY HAIR FROM HER EYES.
HER BIGGEST FEAR WAS BEING PUT
ON A VENTILATOR ROBIN TO RELY
AND THE FEEDING TUBE. AS SHE
SAID SHE IS SHE DIDN'T WANT TO
BE IN TUNED IN HER OWN BODY THAT
WAS HER BIGGEST FEAR.
I WAS WITH THEIR ON JUNE
NINETEENTH TWENTY SIXTEEN. THE
DAY THE END OF LIFE OPTION NOT
TO THE FACT.
AND THANK YOU SO LIMON EGGMAN IN
SENATORS MONEY IN AND AND WILL.
AND COMPASSIONATE CHOICES AND
DAN AND BEN BRITNEY HAVE IF NOT
FOR YOU GUYS.
I DON'T KNOW WHAT WOULD HAVE
HAPPENED BUT.
THAT DAY WERE SITTING OUT ON HER
PER PORCH AND.
THE RELIEF THAT SHE FELT.
IT JUST CAME OVER HER WHEN SHE
ASKED HER CAREGIVER.
PLEASE GO SCHEDULED THE
APPOINTMENT WITH THEM THEIR
PRIMARY CARE DOCTOR TO GET THE
PROCESS GOING.
AND SHE SET THE DATE OF HER
DEATH FOR SUNDAY JULY TWENTY
FOURTH THAT I KNOW FOLKS HAVE
TALKED ABOUT.
THAT THE PROCESS OF PAPERWORK
AND THE DELAYS BUT AT LEAST FOR
BETSY.
A GIVER CHANCE TO GET HER
AFFAIRS IN ORDER IT GAVE HER
FRIENDS A CHANCE BY PLANE TICKET
AND AND GAVE SOME FIT OF OUR
FAMILY A CHANCE TO COME TO COME
TO TERMS WITH BETSY'S CHOICE.
.
SHE INVITED HER CLOSEST FRIENDS
AND FAMILY TO HER HOUSE IN OHIO
FOR TO DAY CELEBRATION.
MORE THAN THIRTY PEOPLE SHOWED
UP TO HELP SEND BETSY ON WHICH
YOU REFERRED TO AS HER NEXT
GREAT ADVENTURE.
THERE IS MUSIC BOOZE GOOD FOOD
LOTS OF PHOTOS
SHE INVITED EVERYONE TO GO
AROUND THE HOUSE AND TAKE OF
BETSY SOUVENIR OF ONE OF HER
PERSONAL ITEMS TO REMEMBER HER
BY.
AROUND AT SIX FORTY FIVE PM THAT
SUNDAY WE DID SET UP A MAKESHIFT
BED UNDER WHITE CANOPY ON A
HILLSIDE NEXT TO OUR HOUSE.
BUDGET A COMBINATION OF MORPHINE
PENTOBARBITAL AND CHLORO
HYDRATE.
AND SHE FELL ASLEEP S THE SUN
WAS SETTING.
MY SISTER IS AN EXAMPLE OF
EXACTLY WHAT DOES LAW INTENDED
TO DO ALLOWED A DYING YOUNG
WOMAN TO ASSERT CONTROL.
OVER THE CHAOS AND UNCERTAINTY
OF A TERMINAL ILLNESS AND SHE
TURNED THAT INTO A REASON TO
CELEBRATE AND SHE WAS THERE TO
JO ANNE SHE ENJOYED EVERY MINUTE
OF THAT PARTY.
.
JUSTIN OVER HERB TO
RECOMMENDATION I MEAN OVERALL IT
WORK THE LAW WORKED AS IT SHOULD
AND.
I MEAN THEIR MAIN PROBLEM.
WAS A WE WANTED A IS TO GET
SEEK AND ALL FOR HER THAT WAS
THE DRUG THAT HER DOCTOR.
PRESCRIBED.
AND BETSY HAD MEDI CAL SO WAS
COVERED.
WE CALLED NUMEROUS PHARMACIES
WITH NO SUCCESS NO NOBODY HAD IT
OR THEY WEREN'T.
WILLING TO PROVIDE THE QUANTITY
BETSY NEEDED ONE PHARMACY SAID
THAT THEY WOULD. DRAW THE
ATTENTION OF THE FDA IF IF THEY
WERE TO PROVIDE THE AMOUNT OF OF
SECRET ALL THAT SHE NEEDED.
.
SO WE ENDED UP GOING WITH THAT
THE MIX OF THAT THE CLERK
HYDRATING AND PENTOBARBITAL
WHICH WAS. THIS KIND OF TOXIC
SLUDGE THAT WE TRIED TO MASK THE
TASTE WITH THEM. SOME COCONUT
MILK BUT IT WAS STILL FATTEN YOU
KNOW PRETTY PRETTY NASTY STUFF.
AND. I HAVE HEARD STORIES OF
PATIENTS WHO HAVE GOTTEN SIGNAL
BUT THEY'LL GET IT IN CAPSULE
FORM. AND SO SOMEBODY HAS TO SIT
THERE AND PULL OPEN THE CAPSULES
BUT TO MAKE CERTAIN POWDERED
JUICE.
I JUST QUALIFIED PATIENTS
SHOULD HAVE ACCESS TO THE MOST
EFFECTIVE. EASIEST TO TAKE
MEDICATION.
NO ESPECIALLY FOR PEOPLE WHO
HAVE DIFFICULTY SWALLOWING
.
AND THERE REMAINS ISSUE OF
ACCESS US SINCE I WROTE ABOUT
BETSY'S DEATH
I RECEIVED COUNTLESS EMAILS FROM
TERMINALLY ILL PEOPLE AND THEIR
FAMILIES. AND THEY WANT TO KNOW
THE NAME OF BETSY'S DOCTOR WHICH
WE HAD PROMISED HER SHE IS A
VERY SMALL PRACTICE AND NO HIGH
AND WE PROMISED HER. WE WOULDN'T
GIVE HER HER NAME OUT.
.
AND.
OVERTIME THESE EMAILS HAVE
SLOWED I STILL RECEIVE THEM I'M
REALLY HAPPY TO HEAR AND
COMPASSION CHOICES PUT TOGETHER
THE ONLINE LIST OF FACILITIES
AND I'LL BE IT DIRECTING FOLKS
TO THAT LIST.
.
I'VE ALSO HEARD FROM OTHER ALS
PATIENTS.
WHO FEAR THAT THE LOSE THE
ABILITY TO ADMINISTER THE DRUG?
FOR THERE READY TO GO I'M AND
WHILE THE LAW AS AS I UNDERSTOOD
IT AT THE TIME.
IT ALLOWS CARE GIVERS TO
PROVIDE SOME ASSISTANCE.
FOR BETSY WE HAD TO TO PROP UP.
THE CUP AND AND ALSO. SOME OF
THE MEDICATION WAS RUNNING DOWN
HER CHIN SO WE KINDA HAD TO
SCRAPE IT UP TO MAKE SURE SHE
GOT IT ALL.
SO WE PROVIDE ASSISTANCE AND WE
UNDERSTOOD THAT WAS OKAY. AND
BUT I KNOW THERE'S OTHERS WHO
BELIEVE THERE CAN BE NO
ASSISTANCE AT ALL AND I THINK IF
THERE'S ONE DISEASE THAT.
THIS LAW WAS DESIGNED FOR ITS
ALS.
.
AND THEN.
WE WERE SO FORTUNATE THAT
BETTY'S PRIMARY CARE DOCTOR WAS
WILLING TO SUPPORT HER CHOICE
YOU ALSO HAD A. A HOSPICE NURSE
WHO IS VERY SUPPORTIVE. LOOKING
BACK.
I ONLY NOW KNOW HOW LUCKY WE
ARE AND I JUST I THINK OF THEM
ALL THE TIME. AND I AM GRATEFUL
FOR THAT.
ITS OF AGAIN THANK YOU SO MUCH
FOR GIVE ME THE CHANCE TO TO
SHARE BETSY STORY.
THANK YOU VERY MUCH I'M SURE
HE'S VERY PROUD THAT YOU GOT UP
AT FOUR THIRTY. BY.
AND SO INTO IT BOTH
ADJOURNMENTS WE WE ALL READ ALL
OF YOUR WORK AND AND NOW AND FOR
DIFFERENT REASONS SHARED THEM
WITH A LOT OF PEOPLE SO. MEAN
YOUR WORDS GO FURTHER THAN THAT
I THINK YOU YOU AND NOW. THANK
YOU.
OKAY AND.
ROBERT STONE.
I AM FORGET STONE.
I'VE. AND MY HUSBAND WAS BOB
STONE AND HE WAS.
ONE OF THE FIRST CHECKS.
TO EXERCISE WHOSE CALIFORNIA.
END OF LIFE OPTION. WHEN I AM
HERE TO SAY THANK YOU.
AND TO TELL YOUR LITTLE ABOUT
THE EXPERIENCE THAT WE SHARED.
MY HUSBAND DID NOT WANT TO DIE.
HE LOVED LIFE HE LOVED HIS WORK.
HE LOVED RUNNING MARATHONS HE
LOVED BICYCLING TRAVELING
MEETING NEW PEOPLE HE LOVED
LIFE.
IN MAY TWO THOUSAND FIFTEEN BOB
WAS DIAGNOSED WITH LATE STAGE
MULTIPLE MYELOMA.
THIS WAS BEYOND DEVASTATING TO
BOTH OF US AND TO OUR FAMILIES.
MY HUSBAND WAS A VERY ANALYTICAL
MAN.
WITHIN DAYS HE KNEW. EVERYTHING
ABOUT THAT CANCER.
ANY NEW IN COLD HARD FACTS.
WHAT HIS FUTURE HELD?
BOB CHOSE THE TREATMENT THAT WAS
RIGHT FOR HIM.
CHEMOTHERAPY WOULD GIVE HIM ONE
TO THREE YEARS LIKE X..
EXPECTANCY.
IN OCTOBER TWO THOUSAND FIFTEEN
HIS CHEMO IS COMPLETED.
ANNE MET WITH HIS STE
ONCOLOGIST.
YOU'RE GIVING HIMSELF ANOTHER
YEAR TO.
HE IN THE DOCTORS WOULD WATCH
THE NUMBERS AND WAIT.
WHAT WAS REFLECTED IN THE NUMBER
IS SPOT COULD FEEL IN HIS BODY?
JUNE TWO THOUSAND SIXTEEN
CALIFORNIA PASSED THE END OF
LIFE OPTION. BOB SIGNED HIMSELF
RIGHT UP
HE.
WAS ECSTATIC.
A HUGE WEIGHT WAS LIFTED FROM
HIS SHOULDERS.
HE'D MADE A VERY PERSONAL A
MAN'S FLEE. DIFFICULT DECISION.
AND HE MADE PEACE WITH HIMSELF.
AND I PROMISE THAT I WOULD
RESPECT AND HONOR THAT.
BOB'S CURRENT ONCOLOGIST AT
KAISER MEDICAL FOUNDATION DIDN'T
SUPPORT THE END OF LIFE OPTION.
SO BOB REALLY. QUESTIONED TO BE
REFERRED TO ANOTHER ONCOLOGIST.
HE WAS EXAMINED BY TWO MEDICAL
DOCTORS AND BECAME A PATIENT IN
THE PALETTE OF CARE UNIT OF
KAISER.
THEY MADE HIM FEEL LIKE USE THE
MOST IMPORTANT PERSON IN THE
WORLD.
IT MADE BOBSO COMFORTABLE IN
HIS SITUATION AND IT ENABLED
HIM.
TO ACTUALLY ENJOY AND TO VALUE
THE REMAINDER OF HIS LIFE.
HIS TEAM CONSISTED. OF THE
ONCOLOGIST BY HOSPICE PHYSICIAN
AND ARE IN IN A SOCIAL WORKER.
THEY WERE ALL IN CONSTANT
CONTACT WITH HIM.
AND WITH EACH OTHER.
THEY CAME THE ARE AND CAME TO
THE HOUSE REGULARLY.
AND THE WHOLE TEAM WAS AVAILABLE
TO HIM.
BY PHONE AND EMAIL AND REGULAR
OFFICE VISITS AND THE HOSPICE
DOCTOR ALSO VISITED HIM AT HOME.
IN JULY TWO THOUSAND SIXTEEN
BOB'S MY LOW NUMBERS STARTED
GOING UP RAPIDLY.
HE COULD SEE THAT IN THE TEST
RESULTS.
AND IN THE CHANGES IN HIS BODY.
SO HE MET WITH A COMPOUNDING
PHARMACIST.
FOR AN HOUR.
THE PRESCRIPTION WAS THREE
DIFFERENT DRUGS
FIRST AN ANTI NAUSEA DRUG.
THEN ONE TO SLOW THE HEART. AND
KEEP IT FROM GOING TOO FAST.
AND THEN NINETY SECOND ALL'S
WHEN KELLY.
I AM SORRY BUT I CAN TELL YOU
WHO WHO.
NINETY SECOND ALL'S ALSO IS A
TOXIC SLUDGE.
AND A MATTER OF FACT BOB.
MIX IT IN APPLE SAUCE.
AND I TOOK A LITTLE TASTE OF IT
THOSE AWFUL.
SO WE PUT A LITTLE ARTIFICIAL
SUGAR IN IT.
I GAVE IT TO HIM.
HE TOOK IT TASTED HE SAID.
SO LITTLE BETTER NEXT TIME I
THINK I'LL TRY THE PUTTING.
SO ANYWAY THE PHARMACIST.
I WISH BOB WELL ANY ASKED IF HE
COULD PRAY FOR HIM.
BOB TOOK THE MEDICATIONS HOME
ALONG WITH A DETAILED SET OF
INSTRUCTIONS.
PUT THEM IN A DRESSER DRAWER
WENT ON WITH HIS LIFE. AND
THINGS GOT WORSE.
AT THE BEGINNING OF SEPTEMBER.
BOB RECALLED TO ME THAT ON
SEPTEMBER TENTH NINETEEN FIFTY
SIX HE ARRIVED.
IN SUNNY LOS ANGELES FROM
BUFFALO NEW YORK WITH HIS MOTHER
BROTHER AND SISTER.
THAT BEGAN THEIR NEW LIFE.
AND HE SAID HE'D LIKE TO TAKE
THE MEDICATION ON SEPTEMBER
TENTH.
ON SEPTEMBER TENTH.
BOB WAS SO CALM.
SO AT PEACE.
WE SPENT THE DAY REMINISCING
ABOUT HIS LIFE OUR LIFE
TOGETHER.
WE'VE IN LASTED SOME OF ARE
STUPID MISTAKES THAT WE HAD
MADE.
NOW WAS OUR LAST DAY TOGETHER.
HERE I SNUGGLED UP AS TIGHTLY AS
WE COULD.
HIS LAST WORDS TO ME WERE.
I CAN FEEL IT ALREADY IT'S GOOD.
AND THEN YOU DIE PEACEFULLY AND
QUICKLY.
THANK YOU.
THANK YOU AND THANKS TO BOB.
AND FINALLY WE HAVE BUT JACQUI
MINOR.
GOOD MORNING I'M JACQUI MINOR
I'M HERE ON BEHALF OF MY MOM
SHERRY AND MY SISTER VALERIE.
ALAN IF MY FATHER HAD.
DR JON MINOR COULD SEE ME SEATED
IN THE ROOM WITH ALL OF YOU HERE
TODAY.
HE WOULD FEEL EXTREME HAPPINESS
AND GRATITUDE.
HE WAS ONE WEEK SHY OF HIS
EIGHTY FIRST BIRTHDAY ON THE
EVENING HE OPTED TO PUT A
PERMANENT END TO HIS SUFFERING.
IT WAS SEPTEMBER FIFTEENTH TWO
THOUSAND SIXTEEN. HE'D FOUGHT
FOR TWO YEARS THROUGH WHAT I
CONSIDERED TO BE UNIMAGINABLE
SUFFERING. HE HAD PULMONARY
FIBROSIS.
OTHER DOCTORS JUST DEEMED IT A.
RARE TERMINAL LUNG DISEASE.
MANY OF THE DOCTORS DIDN'T HAVE
A VERY GOOD UNDERSTANDING OF HIS
ILLNESS.
HIS CONDITION WENT FROM VIOLIN
EXTENDED COUGHING FITS TOO
EXTREME OXYGEN DEPRIVATION TO
EXCESSIVE MUCOUS AND HIS LUNGS.
WHERE WE NOTICE THAT MORE COULD
REALLY HAVE BEEN DONE TO
MAXIMIZE HIS MOBILITY AND WELL
BEING?
WE HAD TO AGGRESSIVELY ADVOCATE
FOR HIM THROUGH MOST OF HIS
ILLNESS.
HE SPENT HIS REMAINING MONTHS
WEEKS AND DAYS AND RELENTLESS
ATTEMPTS TO COMPOSE HIS STORY
AND A PERSONAL STATEMENT TITLED
THE RIGHT TO ASSISTED DYING. HIS
FOCUS LAY IN BROADENING THE
DIALOGUE ON ASSISTED DYING. SO
MY FAMILY HAD MANY CONVERSATIONS
ABOUT IT.
MORPHINE AND FENTANYL OF MAY
THINGS POT FOGGY. BUT STILL WITH
GREAT LUCIDITY HE WAS ABLE TO
SAY THAN WHAT HE WOULD OF PRO
FAMILY WANTED TO HAVE BEEN ABLE
TO SAY TO ALL OF YOU. IN PERSON
TODAY SO THESE ARE HIS WORDS.
I WANT TO EXPRESS MY DEEPEST
GRATITUDE TO THOSE OF YOU WHO
FOUGHT TO BRING THIS ISSUE
FORWARD.
I AM MOST GRATEFUL AND EXTREMELY
RELIEVED TO EXPERIENCE YOUR
COMPASSION JUSTICE ENCOURAGE IN
THE ONGOING STRUGGLE TO MAKE
THIS AVAILABLE TO ALL.
MY DAD THOUGHT MANY DOCTORS OVER
THOSE TWO YEARS AND WE WERE
UNABLE TO FIND ANYONE WHO WOULD
CONSIDER SUPPORTING HIS WISHES
FOR MEDICAL AID IN DYING.
MOST OF THEM WERE RELUCTANT TO
EVEN DISCUSS IT AS AN OPTION
AFTER THE LAW HAD PASSED.
AT THAT TIME WHAT I DESIRED MORE
THAN ANYTHING WAS A DATABASE
WITH DOCTORS WHO WOULD SUPPORT
MY FATHER'S RIGHT TO CHOOSE IS
DEATH.
SHOULD HE MEET THE CRITERIA SET
FORTH IN THE LOT. IN BETWEEN
RESEARCHING A FAMILY MOVED ORGAN
AND COLD CALLING HOSPITALS
LOOKING FOR A DOCTOR. WE
STRUGGLE TO OBTAIN PRESCRIPTIONS
THAT WOULD MEET MY FATHER'S
NEEDS WHILE HIS CODEINE COUGH
SYRUP WAS INITIALLY PRESCRIBED
FOR EVERY SIX HOURS.
THE ADMINISTRATION OF HIS
DOSAGES SOON REQUIRED GREATER
FREQUENCY AND WE WERE OFTEN LEFT
SCRAMBLING TO OBTAIN THE
NECESSARY PRESCRIPTIONS.
WE REPEATEDLY DEALT WITH NEARLY
RUNNING OUT OF ALL DIFFERENT
TYPES OF MEDICINE.
DURING THOSE TIMES WE WERE
ALWAYS SCARED THAT HIS SUFFERING
WOULD SPIKE AND WE WOULD NOT
HAVE THE RIGHT MEDICATION TO
PROPERLY TREAT HIM.
ONCE OR TWICE WE THOUGHT WE WERE
REALLY CLOSE TO FINDING THE
RIGHT HOSPICE PROVIDER. AND THEN
THEY WOULDN'T HAVE ANY
PRESCRIBING DOCTOR IS. DURING
ONE OF MY COLD CALLS I REACHED
THE END OF LIFE COORDINATOR AT
KAISER IN SOUTHERN CALIFORNIA.
I HAD FINALLY FOUND A HEALTH
CARE PROFESSIONAL THAT
PERSONALLY NEW DOCTORS WILLING
TO PRESCRIBE THE MEDICATION.
CONNECTING WITH THIS WOMAN WAS
IN LARGE PART DUE TO THE
COMPASSION AND CHOICES WEBSITE.
WHICH REPEATEDLY PROVED A
CRITICAL RESOURCE THAT IN WHAT
FELT LIKE A VERY UNINFORMED
UNPREPARED DISCONNECTED MEDICAL
WORLD. IT WAS A MAJOR
BREAKTHROUGH IN OUR JOURNEY.
TWENTY TWO MONTHS INTO MY DAD'S
TREATMENT WE YANKED HIM FROM ALL
OF HIS DOCTORS AND NURSES AND
ENROLLED HIM IN KAISER.
IT WAS A BIG DECISION THAT WE
DID NOT TAKE LIGHTLY. WITHIN
WEEKS HE HAD HIS MEDICAL RECORDS
TRANSFERRED WAS ENROLLED IN
HOSPICE AND ASSESSED FOR END OF
LIFE MEDICATION. IT BROUGHT HIM
TREMENDOUS PIECE ONCE HE BEGAN
THIS PROCESS WITH KAISER.
I CALLED ON HOSPICE FOR GUIDANCE
AND SUPPORT SEVERAL TIMES IN HIS
FINAL FEW WEEKS A DIFFERENT
PERSON WOULD COME EACH TIME. AND
EACH ONE WHEN THEY WENT DOWN THE
ROAD OF A PLAN FOR TREATMENT FOR
THAT DAY OR THAT WEEK WE FELT
COMPELLED TO TELL THEM. SAVE
YOUR BREATH HERE THAT HE'S GOING
TO END HIS LIFE VERY SOON.
IT WAS A DIFFICULT CONVERSATION
TO HAVE TO KEEP REPEATING.
ALL OF THE HOSPICE STAFF HAD
OPINIONS ABOUT MY DAD'S FINAL
CHOICE.
ONE OF THEM WAS VERY FORCEFUL IN
THAT HIS DECISION WAS WRONG AND
BASICALLY A MORAL.
SHE DIDN'T EVEN BELIEVE IN
TAKING MEDICATION WHICH IS WHAT
HAD KEPT MY DAD ALIVE TO THAT
POINT HOSPICE.
SHOULD SUPPORT THE DECISIONS OF
THE PATIENT NOT JUDGE AND
CRITICIZE THE SHOULD BE A CORE
VALUE DOWN TO EVERY LAST CARE
GIVER.
ONE ALWAYS HEARS HOSPICE WILL
MAKE THE PATIENT COMFORTABLE. MY
DAD WOULD HAVE REFUTED THE
STATEMENT. HE EXPERIENCED THE
LOCK OF ANYONE'S ABILITY TO MAKE
HIM COMFORTABLE AND SAID SO
REPEATEDLY.
IN THE LAST FEW WEEKS AND
IMPROPERLY DIAGNOSED THRUSH
CONDITION IN HIS MOUTH PROVED TO
BE ONE OF THE GREATEST AND MOST
PAINFUL CHALLENGES OF HIS ENTIRE
TWO YEARS OF SUFFERING.
THE TO PHARMACISTS THAT HAND
DELIVERED THE END OF LIFE
MEDICATIONS WERE INCREDIBLE.
THE PROCESS OF ADMINISTERING THE
MEDICATION WAS TIME INTENSIVE
AND ANXIETY PROVOKING A HE DID
HAVE THE SECOND ALL CAPSULES.
MY MOM SISTER AND I TOOK TURNS
SITTING WITH MY DODD RUBBING HIS
BOX LISTENING TO MUSIC WHILE THE
OTHER TO EMPTY THE CAPSULES.
WE HAD CONCERNS ABOUT HIS HOUSE
MEDICATIONS WOULD INTERACT WITH
THE SECOND ALL BECAUSE WE WERE
PHARMACISTS INSTRUCTIONS TO
CEASE ALL MAD SIX HOURS PRIOR TO
THE SECOND ALL INGESTION.
HIS COUGHING FITS WERE TOO
SEVERE AND HIS PAIN TO GREAT
WE'VE HAD TO CONTINUE I'M ON AS
REGULAR SCHEDULE. VERY
THANKFULLY ONE OF THE
PHARMACISTS HAD LEFT HER CELL
PHONE NUMBER AND ANSWERED AT
EIGHT PM WHEN I CALLED IN
DISTRESS ASKING ABOUT ALL OF
THIS.
SHE GAVE ME DEFINITIVE ANSWERS
AND INSTRUCTIONS ALLEVIATING
SOME OF THE GREAT DIFFICULTY OF
THAT EVENING.
I WAS VERY MOVED BY HER
COMPASSION AND HER HUMAN TOUCH.
AND THEN IT ALL HAPPENED EXACTLY
AS THE PHARMACIST SAID IT WOULD.
HE LAID DOWN AND WENT TO SLEEP
ON THE COUCH IN HER LIVING ROOM.
ENTERED A COMA EVENTUALLY.
OF HIS FINAL WORDS WERE THANKS
FOR LETTING ME SLEEP UP HERE
TONIGHT.
SO I THINK UKIAH SIR THANK YOU
ASSEMBLY MEMBER EGGMAN AND ALL
THE COMMITTEE MEMBERS AND THANK
YOU SO MUCH COMPASSION AND
CHOICES. AND EVERYONE WHO'S
WORKED SO TIRELESSLY ON THIS LOT
MY FAMILY IS FOREVER GRATEFUL.
THANK YOU.
AND THEN ALWAYS ONLY WORK WITH
END OF LIFE WE ALL CRY SO NOBODY
FEEL BAD ABOUT IT JUST.
IT'S PART OF LIVING RIGHT. IN
FEELING IN BEING HUMAN SO THANK
YOU ALL FOR YOUR BRAVERY AND
YOUR STORIES AND. AND. AND.
JERRY YOU'RE LOSS RIGHT BECAUSE
THROUGH THE LOS YOU'VE SHARED WE
ALL LEARN.
YOU CAN MOVE FORWARD.
AND WE GOT SOME TYPE OF PUBLIC
COMMENTS
DEFINITELY LIKE TO MAKE SOME
PUBLIC COMMENTS I THINK THAT.
CURRENT LINE UP OVER HERE.
NEVER PUBLIC COMMENTS OPINIONS
YOU VERY BRIEF IT'S NOT FOR
TESTIMONY IT'S JUST
.
I WASN'T I AM GONNA MOVE AND
JUST WAVING SO THAT PERHAPS
WAITING SO THAT IT DOES GET.
GARBAGE YEAH.
OKAY.
PLEASE. HELLO MY NAME'S DOCTOR
SYRUPY UNDER. AND MY LIFE
BACKGROUND INVOLVES BEING A
BEREAVEMENT COORDINATOR FOR
HOSPICE SO.
GERONTOLOGY DEPARTMENT CHAIR
CLINICAL PSYCHOLOGIST AT CETERA.
AND IT ALSO INCLUDES WASHING MY
FATHER TO HIGH.
FROM HAVING WANTED TO SEND AN
OSTRICH SPURT THAT WASN'T TOO
TELLS HIM ONE AND THAT GOT ME
INVOLVED.
AND SINCE THEN I ACCIDENTALLY
SAW HAVE ONE THING.
KEEP IT UP.
THIS WORK I'VE WITNESSED THIS
WORKING I GOT ASKED DISHES TO
VOLUNTEER.
BY A FRIEND DEL PERSONAL STAGE
FOUR CANCER WHO LIVED IN REMOTE
RURAL NORTHERN CALIFORNIA. AND
IT WAS CHAOTIC I HAD NO WAY OF
KNOWING HOW TO DO ANYTHING. AND
JUST RANDOMLY GRABBED FOR
ANYTHING LIKE COULD ULTIMATELY
FINDING A DOCTOR IN THE BAY AREA
WHO PHYSICALLY DROVE JIM
NORTHERN CALIFORNIA.
BECAUSE THE PATIENT SUTTER OF.
PRIMARY CARE PHYSICIAN WOULD
NOT.
YEAH I'M ASSIST HIM IN MY COUNTY
THE HOSPICE WILL NOT PROVIDE
INFORMATION ABOUT IN THE BELIEF
OPTION AS PART OF THEIR PACKAGE.
FOR PATIENTS QUALIFY.
AND ON.
THOUGH I DID WORK WITH THE
HOSPICE Y. SUTTER IN THAT
FACILITY.
SO MY ENCOURAGEMENT WOULD BE AND
IT WAS SUCCESSFUL.
AND MY ENCOURAGEMENT WOULD BE
FOR US TO GET THAT LIST OF
DOCTORS SO THAT THAT PATIENT
COULD HAVE HAD ANOTHER
ALTERNATIVE. WHEN HE WAS
COMPLETELY ABANDONED AND ALONE
IN A RURAL. AREA.
SO THANK YOU VERY MUCH THANK YOU
VERY MUCH WHICH BRINGS UP THE
ISSUE THE TELEMEDICINE THAT WE
CAN AT SOME POINT RIVERS THANK
YOU.
GOOD AFTERNOON ISSUE.
I'M REVEREND MARK ESTES SOME AN
INTERFAITH CHAPLAIN.
WITH KINDRED HOSPICE AND ALAMEDA
AND CONTRA COSTA COUNTY.
I AM ALSO A VOLUNTEER CLERGY
PERSON FOR COMPASSION AND
CHOICES.
AND SIMPLY PUT.
THE END OF LIFE OPTION ACT HAS
PROVEN TO BE A GENEROUS
COMPASSIONATE GIFT OF MERCY AND
PEACEFUL EMPOWERMENT FOR MANY OF
THE PATIENTS THAT I'VE ESCORTED.
I HAVE A PROFOUND EXPERIENCE OF
JUST A MONTH EXCUSE ME TWO
MONTHS AFTER THE LAW WAS
ENACTED.
OF A PERSON VERY SUCCESSFULLY.
TELLING THEIR SACRED STORY TO ME
TO BE ABLE TO CHOOSE MEDICAL AID
IN DYING.
THE PERSON WAS ABLE TO DIET HOME
SURROUNDED BY THEIR LOVED ONES.
IN A VERY SMOOTH AND GENTLE
PROCESS.
I JUST WANNA SAY THAT THE
MEDICAL AID IN DYING HAS ALLOWED
HER.
SO MANY PEOPLE TO BE ABLE TO
LIVE FULLY BY DYING IN CHOOSING
TO IN THIS WAY.
I ALSO WROTE A POEM WHICH WOULD
HAVE TIME FOR NOW BUT I DID HAVE
TO HAVE IT KNOW FULL WELL SHARE
WITH YOU THAT PAINTS A PICTURE
OF WHAT IT WAS LIKE.
TO BE IN THAT ROOM.
I'LL LEAVE IT FOR YOU THE
COMMITTEE THANK YOU VERY MUCH.
GOOD AFTERNOON MY NAME IS
CAROLYN. AND I AM THE MOTHER OF
THE FIFTY NINE YEAR OLD YOUNG
MAN WHO ALSO. IN JUNE OF LAST
YEAR USE THE END OF LIFE LOWER.
I HAVE A LOT OF THINGS THEY ONE
ESSAY ON AND NO WISH AT A TIME
SO I WANT BUT I DO WANT TO.
GIVE MY BLESSING TO THE FAMILY
OF BRITNEY MANOWAR WHO I.
THINGS JUST STARTED THE WHOLE
THING I ALSO WANT TO SAY THAT
KAISER PERMANENTE. HAS AN
ABSOLUTELY WONDERFUL PROGRAM MY
SON WAS WITH THEM HE WAS HILL
FOR FOUR YEARS HE ACTUALLY
PASSED FROM CIRRHOSIS OF THE
LIVER. WHO WAS A VERY VERY
DIFFICULT LAST YEAR IN THE LAST
SIX MONTHS HE WAS UNDER HOSPICE
CARE WITH BRISTOL HOSPICE WHO
WERE WONDERFUL? AND I CAN'T TELL
YOU IF ANYBODY WANTS AT.
GOLD STANDARD FOR HOW TO HANDLE
THIS AGES KAISER PERMANENTLY.
OURS WAS IN ROSEVILLE IN
SACRAMENTO THE DOCTORS WERE
WONDERFUL THEY GAVE US A
FACILITATOR THE PHARMACIST
BROADLY MEDICATION TO THE HOME.
AND MY SON MADE THE DECISION
THAT THIS WAS THE WAY IT WAS
GOING TO GO. AND IN THE END HIS
MIND WAS STARTING. TO.
JUST GET LOST YOU COULD EVEN.
CALL ANYBODY OR USE THE TV. SO
THANK YOU.
TOMATO FAMILY AND TO KAISER
PERMANENTE AND TO ASSEMBLY WOMAN
EGGMAN. AND.
GOD BLESS YOU ALL THANK YOU.
THANK YOU VERY MUCH.
MY DAUGHTER.
I AM BACK USEFUL.
THAT'S MY MOTHER THERE AND SHE
SAID MY BROTHER PASSED AWAY IN
TILL JUNE OF LAST YEAR BY TAKING
AND OF LIFE PROCESS.
IT WAS A GODSEND HE CHOSE THE
DAY IT GAVE HIM SUCH A FREE
SPIRIT IT USED.
THE LAST FEW WEEKS KNOWING HE
WAS IN CONTROL OF HIS CHOICE AND
GOING FORWARD.
WE TO AS MANY OTHERS HAVE SPOKE
HAD A PARTY WE HAD A COUPLE
BARBECUES OVER THE WEEKENDS YOU
KNOW THEIR BARE NOT OF AND A
BOTTLE OF TEQUILA. THOSE TYPES
OF THINGS IT WAS A CELEBRATION
IN HE WAS IN CHARGE OF IT.
I WOULD ECHO WHAT MY MOTHER
SAID ABOUT KAISER PERMANENTE A
ENTER HOSPICE PROVIDERS THEY
WERE ABSOLUTELY FABULOUS. IT WAS
A LITTLE DISHEARTENING TO HEAR
SOME OF THE STORIES ABOUT THE
TIME LINES AND THAT THAT WAS A
PROBLEM FOR PEOPLE WE DID WE
WERE VERY FORTUNATE WE DID NOT
FACE ANY UP THAT. SO I THINK
LISTENING TODAY I WASN'T
PREPARED TO SPEAK BUT I THINK I
FOUND MY CALLING I'M GOING TO
GET INVOLVED IN THIS
ORGANIZATION AND PUSH THIS
THROUGH A LITTLE MORE. ARE DO
WORK FOR THE DEPARTMENT OF
HEALTH CARE SERVICES LIVE WORK
AND MEDI CAL AND MY BROTHER WAS
A MEDI CAL AND VERY FORTUNATE
THAT THE STATE COVERS THAT FOR
MEDI CAL BENEFICIARIES. SO WE'LL
BE SEEING MORE BALLOT THANK YOU
THANK YOU THANK YOU VERY MUCH.
HELLO I'M LYDIA ANGER ME FROM
SACRAMENTO.
ELEVEN DAYS AGO.
MY SISTER USED END OF LIKE
OPTION.
SHE WAS A PIONEER WE'RE WITH
KAISER.
NEITHER.
HER ONCOLOGIST INTERNISTS
HOSPICE WORKERS PALLIATIVE CARE
WORKERS PHARMACIST OR
CARDIOLOGISTS.
HAD HAD A PATIENT YET.
THEY WERE INFORMED SORT OF.
THE PHARMACIST CAME TO THE HOUSE
DELIVER THE MEDICATION HE WAS
WONDERFUL WE FOUND OUT
AFTERWARDS.
THAT HE HAD NO EXPERIENCE WITH
A REAL LIFE PERSON WHO IS DYING.
AND THERE WERE SOME PROBLEMS
WITH THAT.
MAIN THING I WANT TO THANK YOU
FOR THE LAW WE BEEN FOLLOWING
THIS FOR LONG TIME.
FROM THE DAYS OF DOCTOR
KEVORKIAN WHO WAS WAY AHEAD OF
HIS TIME AND SO IN OUR FAMILY WE
HAVE DISCUSSED THIS AND WE COME
FROM A MEDICAL FAMILY.
.
HAVING THAT THE MEDICINE WAS A
COMFORT.
A IT DOES GIVE PEOPLE A CHOICE
IT GIVES THEM THE SENSE OF
SATISFACTION IN FACT THEY
FOUNDED WITH RESEARCH ANALYST
LESIA. THAT PEOPLE HAVE
ANESTHESIA AT HOME POST
OPERATIVE OR WHATEVER THEY USE
LESS
BECAUSE THEY HAVE CONTROL OF IT
THEMSELVES THAT WAS HUGE FOR US.
ALSO I MUST SAY THAT.
BECAUSE WE HAD THE TIME TO BUILD
UP TO THE TO THE END.
BECAUSE WE DID IT TOGETHER
BECAUSE MY SISTER WAS AT HOME
WITH FAMILY.
BUT THEY CAN'T TELL RIGHT NOW
THE POST GRIEVING IS EASIER THAN
ANY GRIEVING I'VE BEEN THROUGH
WITH OTHER MEMBERS OF MY FAMILY
WHO HAVE DIED SUDDENLY.
SO IT'S A BLESSING FOR THE
PEOPLE WHO ARE DYING AND I THINK
IF IT WERE ANY INDICATION FOR
THE PEOPLE WHO ARE LEFT BEHIND
REMEMBERING.
NO ONE MORE THING LAST THING.
BOTH MY SONS ARE PHYSICIANS THEY
WERE WITH US.
WE KNEW NOTHING ABOUT THE
MEDICATION.
THERE WAS THE.
COCKTAIL BEFOREHAND SO THAT SHE
WOULDN'T BE NAUSEOUS THAN
SOMEONE.
AND THEN WE SHE HAD THIS SEEK IN
OUR.
WHAT I'M HEARING HERE IS THAT
THERE ISN'T ANY THERE ARE
ALTERNATIVES LESS EXPENSIVE
ALTERNATIVES THERE'S A HOME?
PHARMACIES THAT CAN.
CAN COMBINE.
MEDICATIONS WE DIDN'T KNOW THAT
WE NEVER HEARD IT THAT WOULD BE
NICE TO KNOW THAT THEIR
ALTERNATIVES I WAS READING MY
SON'S READ WE NEVER HEARD THAT I
READ THAT.
BUT AS SHE WAS DYING ISSUES A
HUNDRED POUNDS MAY BE AND WE
WERE TOLD THAT MAYBE IN AN HOUR
OR SO SHE WOULD DIE.
TOOK A SIX AND A HALF HOURS JUST
THE LONGEST TIME THAT WE WERE
TOLD TO USUALLY FIVE HOURS WITH
THE OUT SIDE.
THAT WAS.
EXCRUCIATING FOR THOSE OF US WHO
WERE WATCHING HER DIET NOT FOR
HER SHE WAS PEACEFUL SHE WAS IN
A COMA RIGHT AWAY. IT WAS
WONDERFUL FOR HER.
I WOULD JUST SUGGEST THAT
THERE'S MORE INFORMATION ON THE
DIFFERENT TYPES OF MEDICATION.
CERTAINLY HOPEFULLY TO BRING THE
PRICE DOWN AS WELL.
AND.
OUR HOSPICE AT KAISER DIDN'T
SAID THEY COULDN'T BE PRESENT
ONE WHEN SHE TOOK THE MEDICINE
AND DIED THAT HASN'T BEEN MY
EXPERIENCE WITH PREVIOUS HOSPICE
EXPERIENCE.
AND.
.
I DON'T KNOW I UNDERSTAND THAT
BUT THAT WOULD OF BEEN HELPFUL
BECAUSE THEY WOULD HAVE HAD.
MAYBE MORE MORPHINE MORE
MEDICATIONS TO GIVE HER.
AS SHE WAS IN HER COMA TO BOB
AND.
SPEED IS THAT SHE WOULD HAVE
HATED TO MOUNTAIN LINGER SHE
REALLY PHOTO BE FASTER.
SO ANYWAY THANK YOU FOR THE
OPPORTUNITY TO WORK PONCE TO
THIS VERY MEANINGFUL EXPERIENCE.
THANK YOU VERY MUCH AND SORRY
FOR YOUR LOSS.
AND WE'LL LINGER WANTED TO BE
ABLE TO MAKE A STATEMENT AS A AS
AN INDIVIDUAL.
MANY OF MY PHYSICIAN COLLEAGUES
HAVE INDICATED TO ME THAT THEY
FEEL THAT THEY'RE FORCED TO BE
UNTRUTHFUL.
WHEN WE'RE NOT BEING ABLE TO
RITE AID IN DYING ALONG WITH THE
TERMINAL CONDITION
ON THE DEATH CERTIFICATE.
THANK YOU.
HI ó I MEAN GO AND LIVE HERE
IN SACRAMENTO AND ON MY HUSBAND
AND I WORKED OF WITH CAPTAIN WE
CAME AND VOLUNTEERED. MANY MANY
TIMES TO COME DOWN TO THE
CAPITOL WHEN YOU WERE BEGINNING
TO PASS WITH.
A LONG WE WERE BOTH VERY VERY
HOPEFUL FOR IT A UNFORTUNATELY
DOESN'T SERVE PEOPLE LIKE MY
HUSBAND WHO ALTHOUGH HE. HE CAME
AND.
LOBBY OF WITH MAY YORK ARE
ATTENDED IT ALTHOUGH SESSIONS.
BECAUSE HE HAS DEMENTIA SO
LET'S LOOK TO THE FUTURE.
AND LET'S THOUGHT HE WAS A MAN
OF RENAISSANCE MAN IF I COULD
CITE.
AHEAD OF HIS TIME. OF NOT
LOCKED IN HIS BODY BUT HIS BRAIN
IS A PRETTY MUCH GONE.
HIS POLL STE
WAS A VERY CLEAR HE WOULDN'T
WANT TO BE WHERE HE IS NOW. AND
THERE MANY THINGS THAT CAN'T BE
SOLVED.
AND SO LET'S LOOK TWENTY YEARS
HENCE AND THAT'S NOT FORGET
THOSE PEOPLE WHO ARE NOW FOR
COTTON.
THANK YOU SO MUCH IN THAT THAT
IS CERTAINLY SOMETHING I THINK
WE'VE ALL HEARD REPEATEDLY. AND
I THINK WE ALL UNDERSTAND THE
COMPLICATIONS AND TRYING TO.
TO ADDRESS IT.
.
SO WILL WE WE WILL CONTINUE ON
HAS.
SO AGAIN I WANT TO THANK
EVERYBODY CENTER WALKED WOULD
YOU WANNA MAKE ANY STATEMENTS.
YEAH A SOAP AGAIN THANK YOU
EVERYBODY WHO'S PARTICIPATED AND
AGAIN WE WERE TELEVISED HOME
JUDICIAL PALLOTTA BETTER PEOPLE
OUT THERE WATCHING TODAY. THANK
YOU ALL FOR YOUR BRAVERY THANK
YOU ALL FOR YOUR ADVOCACY THANK
YOU ALL FOR YOUR COURAGE IN
COMING AND SHARING YOUR STORIES.
ARE AND ANYONE IN YOUR LOVED
ONES LIVES TO TO. FOR THEM TO
CONTINUE TO LIVE ON IN IN THE
WORK THAT WILL CONTINUE TO DO.
THANK YOU