Welcome to the Clinical Center Grand Rounds, a weekly series of educational lectures for physicians and health care professionals broadcast from the Clinical Center at the National Institutes of Health in Bethesda, MD. The NIH Clinical Center is the world's largest hospital totally dedicated to investigational research and leads the global effort in training today's investigators and discovering tomorrow's cures. Learn more by visiting us online at http://clinicalcenter.nih.gov >> WELL, GOOD AFTERNOON, EVERYBODY, AND WELCOME TO CLINICAL CENTER GRAND ROUNDS. SO SPECIAL TO SEE ALL OF OUR NURSING COLLEAGUES WHO ARE HERE TODAY AND I'M SURE MORE ARE GOING TO FLOW IN IN A FEW MINUTES BECAUSE THAT'S WHAT HAPPENS EVERY WEEK. THIS IS NATIONAL NURSES WEEK AND THE THEME FOR THE WEEK IS ETHICAL PRACTICES AND QUALITY OF CARE. AND WE ARE PROUD THAT HERE AT THE CLINICAL CENTER, OUR ON NURSING COLLEAGUES ARE ACTIVE PARTAENERS AND COLLABORATORS IN VIRTUALLY ALL ASPECTS OF THE CLINICAL RESEARCH ENTERPRISE. TODAY WE HAVE TWO PRESENTERS WHO WILL SPEAK ABOUT THE ETHICS OF CARE GIVING, PROVIDING CHALLENGES AND BALANCING OBLIGATIONS. THEY ARE A TEAM SO I WILL INTRODUCE THEM TOGETHER AND THEN THEY WILL TAKE OVER THE SHOW. OUR FIRST SPEAKER IS LESLIE WEHRLEN, COMMANDER WHRLEN IS IN THE NIH'S CLINICAL CENTERS NURSING DEPARTMENT. SHE'S ALSO A COMMANDER IN THE U.S. PUBLIC HEALTH SERVICE. SHE EARNED HER BACHELOR OF SCIENCE IN NURSING AT THE GEORGE MASON UNIVERSITY SCHOOL OF NURSING IN 1998 AND EARNED HER MASTER OF SCIENCE AND MEDICINE AT THE GEORGE WASHINGTON SCHOOL OF MEDICINE OF NURSING IN 2014. COMMANDER WEHRLEN BEGAN WORKING AS AN INTERN, WORKING ON HEMEATOLOGY AND BLAD AND MARROW TRANSPLANTATION UNIT IN 1998. SHE SHE COMPLETED THE CANCER NURSE INTERNSHIP PROGRAM A YEAR LATER AND HELD A VARIETY OF NURSING POSITIONS HERE AT THE CLINICAL CENTER, CARING FOR HEMEATOLOGY, ONCOLOGY AND STEM CELL TRANSPLANT PATIENTS. SINCE 2008, COMMANDER WEHRLEN HAS SERVED AS A STUDY TEAM LEADER AND ASSOCIATE INVESTIGATOR ON CLINICAL STUDIES AT THE NIH, ESPECIALLY IN COLLABORATION WITH DR. MARGARET BEVINS, SHE PRESENTED RESEARCH FINDINGS AT LOCAL AND NATIONAL MEETINGS ON CLINICAL RESEARCH NURSING AND QUALITY OF LIFE OUTCOMES AND STEM CELL TRANSPLANTATION RECIPIENTS AND THEIR FAMILIES. SHE IS A MEMBER OF THE ONCOLOGY NURSING SOCIETY AND IS CERTIFIED THROUGH THE SOCIETY AS AN ONCOLOGY CERTIFIED NURSE SINCE 2000 IS AN ACTIVE MEMBER IN SEVERAL OF THE U.S. PUBLIC HEALTH SERVICE COMMISSION CORE SUBCOMMITTEES. S SERVES AS THE CO-LEAD OF THE ANNUAL NIH FAMILY CARING DAY TAT HIGHLIGHTS THE NEEDS OF PATIENTS AND THEIR FAMILIES AND PROVIDES RESOURCES TO SUPPORT CAREGIVERS HERE AT THE CLINICAL CENTER. OUR SECOND SPEAKER IS DR. MARGARET BEVINS, SHE IS PROGRAM DIRECTOR OF THE SCIENTIFIC RESOURCES AND CLIICAL NURSE SPECIALIST IN THE NURSING RESEARCH AND TRANSLATIONAL SCIENCE SECTION OF OUR NURSING DEPARTMENT. SHE IS ALSO A COMMANDER IN THE U.S. PUBLIC HEALTH SERVICE. SHE EARNED HER BACHELOR OF SCI DEGREE AT JOHNS HOPKINS AND 1986 AND STARTED HER CAREER ATA NIH IN 1988. SHE BEGAN WORKING IN HEMEATOLOGY, BLOOD AND MARROW TRANSPLANTATION PROGRAMMED HERE IN 1992. SHE EARNED BOTH HER MASTERS OF SCIENCES IN 1993 AND HER Ph.D. IN 2005 FROM THE UNIVERSITY OF MARYLAND. SHE ALSO HOLDS ASSISTANT AND ADJUNCT FACULTY APPOINTMENTS THAT THE UNIFORM SERVICES, UNIVERSITY OF HEALTH SCIENCES AS WELL AS THE UNIVERSITY OF MARYLAND SCHOOL OF NURSING. HER RESEARCH FOCUS AND CLUES RELATES TO HEALTH, QUALITY OF LIFE, SYMPTOM EXPERIENCE OF BLOOD AND MARROW TRANSPLANT RECIPIENTS, THE PSYCHOSOCIAL OUTCOMES AND BIOMARKERS OF PERCEIVED STRESS AND ILLNESS AND CHAIR GIVERS AND EFFECTIVE INTERVENTIONS THAT TRANSPLANT CAREGIVERS. IN ADDITION TO OUR INDEPENDENT RESEARCH SHE SERVES AS AN ASSOCIATE INVESTIGATOR AND RELATED QUALITY OF LIFE EXPERT FOR MULTIPLE NIH INTRAMURAL RESEARCH TEAM. DR. BEVINS, OTHER RESPONSIBILITIES INCLUDE MEMBERSHIP ON THE NIH ETHICAL COMMITTEE AND THE NIH BLOOD AND MARROW TRANSPLANTATION CONSORTIUM. SHE IS A MEMBER OF THE MEMBER SOCIETY AND AMERICAN PSYCHOSOCIAL AND ONCOLOGY SOCIETY THAT IS PRESENTED NATIONALLY ON HER RESEARCH AND NURSING PRACTICES OF MARROW AND BLOOD TRANSPLANT PROGRAM, AND DR. BEVINS, THE CAREER DEVELOPMENT AWARD FROM THE ONCOLOGY NURSING SOCIETY, THE REAR ADMIRAL FAGEE AWARD FOR NURSING AND AN NIH DIRECTOR'S AWARD FOR CONTINUING EFFORTS TO IMPROVE THE PRACTICE OF BLOOD AND MARROW TRANSPLANTATION. IN 2010 SHE RECEIVED THE PUBLIC HEALTH SERVICES CHIEF NURSE OFFICER AWARD. SHE WAS INDUCTED AS A FELLOW OF THE AMERICAN ACADEMY OF NURSING AT ITS ANNUAL CONFERENCE THIS PAST OATH, SO --OCTOBER SO WE HAVE A STELLAR TEAM AND LET'S WELCOME COMMANDER WEHRLEN OUR FIRST SPEAKER. >> SO GOOD AFTERNOON EVERYONE AND HAPPY NURSES WEEK. I WANT TO JUST TAKE A MOMENT TO THANK YOU FOR YOUR INTEREST IN OUR PRESENTATION TODAY BUT ALSO TO ACKNOWLEDGE THAT THIS IS NOT ONLY MARGARET AND MY--OUR WORK BUT IT'S A TEAM APPROACH SO DR. GRADY, DR.ALISON ROSS FROM SLOAN-KETTERING AND [INDISCERNIBLE] IS ALL A PART OF THIS WORK. SO WE HAVE NO CONFLICTS TO REPORT AND I WANTED TO SHARE THAT I HAD THE GREAT PLEASURE OF WORKING WITH MARGARET THESE LAST SEVEN YEARS AND OVER THESE YEARS IN OUR CAREGIVER RESEARCH, I'VE HAD THE OPPORTUNITY TO MEET AND WORK WITH FAMILIES UNDERGOING CHALLENGING EXPERIENCES AND GETTING TO KNOW THEM AS THEY GO THROUGH THEIR JOURNEYS AND CANCER TREATMENT. TODAY OUR PRESENTATION WILL EXAMINE OUR DUTY OF HEALTHCARE PROVIDERS TO ADDRESS AND SUPPORT FAMILY CAREGIVERS EMOTIONAL WELL BEING WHEN THEY'RE CALLED UPON TO SERVE AS A CAREGIVER FOR A LOVED ONE UNDERGOING CANCER TREATMENT AND I'LL PRESENT AN ANONYMIZED CASE WHICH PROVIDE FOR THE THEMES AND EXPERIENCES WE ENCOUNTERED WITH THESE FAMILIES AND I WILL FOCUS ON THE MISTER OBJECTIVE WHICH WILL LEAD INTO MARGARET'S TALK AND FOCUS ON THE ETHICAL DILEMMA TO REPORT ON THE FAMILY HEALTHCARE PROVIDERS. SO THIS IS NOT OUR CASE BUT WE WANTED TO JUST SHOW SOME MEMBERS OF A CARE GIVING TEAM AND YOU CAN SEE THERE ARE NURSES, THERE'S DOCTORS AND THEN THERE'S THE PATIENT AND THEIR CAREGIVERS AND I WANT TO BRIEF THEIR VIEW OF STEM CELL TRANSPLANTATION FOR THOSE THAT ARE UNFAMILIAR WITH THE TREATMENT. IT IS BY FAR ONE OF THE MOST GRUELING CANCER TREATMENTS OUT THERE. THE INITIAL HOSPITALIZATION FOR STEM CELL TRANSPLANT RECIPIENT CANS RANGE ANYWHERE FROM ONE-TWO MONTHS AND DURING THIS PHASE, THE RECIP YEBTS GET CHEMO THERAPY, IMMUNOSUPPRESSION AND RECEIVE STEM CELLS AND AFTERWARDS THEY BEGIN THE WAITING GAME, WAITING FOR BLOOD COUNTS TO RECOVER AND WHEN THEY'RE STABLE, THEY ARE DISCHARGED FROM THE AREA AND THEN FOLLOW UP FOR THREE-X MONTHS AFTER WITH THE TRANSPLANT TEAM. THIS IS OF COURSE BARRING ANY MAJOR COMPLICATIONS WHICH OFTEN DO ARISE FOR TRANSPLANT PATIENTS IN THE FAMILY. AND BECAUSE OF THE TREATMENTS CAN INCLUDE MEDICATIONS THAT PREVENT TRANSPLANT RECIPIENTS FROM DRIVING AND THEIR IMMUNE RECOVERY IS LENGTHY A CAREGIVER IS REQUIRED TO HELP THEM FOR TAKEN--THEY INITIAL DISCHARGE PERIOD AND THE OUTPATIENT FOLLOW UP FOR THREE-SIX MONTHS. AND SOME TRANSPLANT PATIENTS ARE VERY LUCKY AND FORTUNATE TO HAVE FAMILY MEMBERS AND FRIENDS THAT CAN SERVE AS THEIR CAREGIVERS WHILE OTHERS STRUGGLE TO PIECE TOGETHER A CARE GIVING TEAM TO SUPPORT THEM IN THAT PROCESS. WHEN THEY'RE AN OUTPATIENT AND COMING TO THE TRANSPLANT CENTER, THE MAJORITY OF THE CARE IS TURNED OVER TO THE CAREGIVER AT THAT POINT SO THERE'S NO LONGER THIS 24-SEVEN SUPPORT SYSTEM THAT THEY'RE USED TO WHEN THEY'RE IN AN IN-PATIENT. OKAY. SO WE MET HELEN AND JOHN JUST BEFORE THEY ADMITTED FOR THEIR STEM CELL TRANSPLANTS AND JOHN IS THE WAGE EARNER FOR FAMILY AND PRIOR TO GETTING HEALTH, THEY WERE LIVING ABOUT ONE HOUR AWAY FROM THE NIH AND YOU KNOW THE TRAFFIC AROUND HERE. SO THE AMOUNT OF TIME THAT JOHN HAD TO SPEND TRAVELING BACK AND FORTH FOR THE OUTPATIENT SIGNIFICANTLY IMPACTED JOHN'S TIME THAT HE HAD TO DEVOTE TO HIS BUSINESS AND WORK. HELEN WAS DEMOCRACIED WITH ACUTE MILEOG NOWS LEUKEMIA ABOUT ONE YEAR AGO, APPROXIMATELY AND AFTER HER DIAGNOSIS SHE RECEIVED INITIALLY CHEMO THERAPY TO CONTROL HER DISEASE BUT SHE HAD LEARNED THAT TRANSPLANT WAS HER REAL ONLY HOPE FOR A CURE. AND LUCKILY FOR HER, HELEN'S SISTER WAS A PERFECT MATCH AND WAS ABLE TO DONATE THE STEM CELLS FOR HER TRANSPLANT. SHE DIDN'T HAVE ANY COMPLICATIONS IN THE INITIAL HOSPITALIZATION OR EVEN IN THE TIME LEADING UP TO THE TRANSPLANT SO IT'S PRETTY UNREMARKABLE. AND SHE IS CURRENTLY 35 DAYS POST TRANSPLANT AND COME NOTHING HER OUTPATIENT FOLLOW UP. HELEN AND JOHN HAVE BEEN MARRIED FOR 30 YEARS, TWO ADULT CHILDREN AND NEITHER LIVE CLOSE BY FOR THE ABILITY TO SERVE AS CAREGIVERS TO HELP DURING HELEN'S TRANSPLANT. THEY SPECIFIC DETAILS ON HAVE CLOSE FAMILY FRIENDS--DO HAVE CLOSE FAMILY FRIENDS THAT HELP SUPPORT THEM OVER THE LAST YEAR BUT JOHN IS THE PRIMARY PERSON FOR PROVIDING CARE AND THE MAIN SOURCE OF SUPPORT FOR HELEN DURING HER TREATMENT. SO WE ALL KNOW THERE'S SEVERAL SIDES TO EVERY STORY BUT IN CARING FOR HELEN AND JOHN AND GETTING TO KNOW THEM BOTH BETTER, WE LEARN MORE ABOUT THEM AS THEY WERE COMING FOR THEIR OUTPATIENT FOLLOW UP VISIT. HELEN WAS WORKING THROUGH ISSUES, BETWEEN HER AND JOHN AS A RESULT OF HER ILL RESPONSE TREATMENT. BEFORE SHE WAS ACCUSTOMED TO TAKING TO THE FAMILY AND THE HOUSE AND SHE WOULD IN GENERAL DESCRIBED JOHN HAS BEING HIGH STRUNG AND MOTIVATED, A SMALL BUSINESS OWNER THAT HAD TO WORK VERY HARD. IT DIDN'T COME UP BEFORE THE TRANSPLANT WHEN THEY WERE IN THIS-PATIENT BUT IT BECAME MORE CLEAR THAT SHE WAS WORRIED ABOUT JOHN BECAUSE HE HAD A HISTORY OF ALCOHOL ABUSE AND SHE WAS REALIZINGLY THAT TAKING CARE OF HER DURING THIS TIME WAS ONLY ADDING TO HIS STRESS LEVEL. SO ONE DAY WHEN SHE WAS AT HOME EVER BEING DISCHARMINGED SHE WENT TO TAKE SOME OXYCODON TABLETS AND SHE REALIZED THERE WERE LESS THAN SHE HAD EXPECTED. AND AT THAT TIME, SHE ASKED JOHN, HEY, JOHN DO YOU KNOW WHAT'S GOING ON, I THINK THAT THERE'S SOME MISSING? AND AT THAT TIME HE TOLD HER, HE SAID, YOU KNOW I SOME PAIN AND I TOOK SOME OF THEM MYSELF. AND OVER THE LAST FEW DAYS SHE NOTICED HE HAD BEEN DRINKING MORE WHICH MADE HER MORE CONCERNED. SO THAT WAS A TURNING POINT WHERE SHE DECIDED AT THAT POINT ON, SHE WOULD BEGIN TO MANAGE HER OWN MEDICATION AND THEN ALSO HIDE THEM FROM JOHN SO THAT HE WOULD AVOID ANY FUTURE ISSUES WITH HIS SUBSTANCE ABUSE. BUT HELEN HAD 15 MEDICATIONS AND MOSTS OF THEM WERE YOU KNOW MULTIPLE DOSES A DAY. SO AT THAT POINT IN THE TRANSPLANT DURING ONE OF THE OUT-PATIENT VISITS SHE TALKED TO THEM TO ONLY SPEAK WITH HER ABOUT HER PAIN, MEDICATION AND MANAGEMENT SO THAT JOHN WOULD NOT BE ABE TO USE ANY MORE OF HER MED OR AND TO PREVENT EXACERBATION OF SUBSTANCE ABUSE. AND I THOUGHT IT WAS ALSO IMPORTANT TO SHARE AT THIS POINT, HELEN AND JOHN WERE COMING TO THE TRANSPLANT CENTER, TWO-THREE TIMES A WEEK AND IN ADDITION TO TRAVEL TIME THEY WERE SPENDING ABOUT FOUR-SIX HOURS A DAY AND THAT'S ABOUT 20-28 HOURS A WEEK AND JUST FOLLOW CARE. THIS DOESN'T INCLUDE ALL THE THINGS THAT NEED TO BE DONE AT HOME OR EVEN WITH JOHN'S BUSINESS. SO JOHN'S STORY WAS THAT HE WAS RELUCTANT TO LEAVE HELEN FOR ALMOST ANY REASON. HE ADMITTED TO SOME OF OUR TEAM THAT HE FELT GUILTY WHEN HE HAD LEAVE HER TO TAKE CARE OF ALMOST ANYTHING. IN FACT THE IMPACT OF TAKING CARE OF HELEN WAS SIGNIFICANT AND TAKING CARE OF HELEN WAS ALMOST LIKE A SECOND FULL-TIME JOB FOR JOHN. SO AS A SELF--EMPLOYED BUSINESS OWNER ISSUES HIS WORK WEEK IS NOT WHAT WE CONSIDER A TYPICAL WORK WEEK, IT'S NOT THE STANDARD 40 HOURS, IT WELL EXCEEDS THAT IN GENERAL. SO HE--JOHN, SINCE IT IS DISCHARGE HE SHARED WITH THE NURSES IN THE SOCIAL WORK TEAM THAT HE HAD BEEN FEELING OVERWHELMED AND WE ALSO LEARNED ABOUT HIS PAST ALCOHOL ABUSE AND WITHOUT HIS NORMAL ROUTINE AND SUPPORTS HE HAD TURNED BACK TO DRINKING TO MANAGE THE ANXIOUS AND BURDEN HE WAS FEELING. SO HE WASN'T COPING LANXIOUS, OVERWHELMED DEPRESSED AND BROUGHT ABOUT BY SIGNIFICANT CHANGES IN THEIR LIFE THAT HAD OCCURRED AS A RESULT OF HELEN'S ILLNESS AND THEN WE LATER LEARNED THROUGH HELEN THAT ON A COUPLE OF OCCASIONS HE TOOK THE CO DONE TABLETS TO ESCAPE THIS REALITY AND MANAGE HIS ANXIETY AND HE KNEW HE WASN'T MANAGING LUNG CANCER BUT HE DIDN'T WANT TO TAKE TIME AWAY FROM HELEN OR EACH ANY OF THE FOCUS AWAY FROM HER BECAUSE HE FELT HER RICOVERY WAS A PRIORITY OVER HIS OWN NEEDS. SO YOU KNOW YOU HEARD NITHAT JOHN AND HELEN'S LIVES CHANGED DRAMATICALLY AS A RESULT OF HELEN'S ILLNESS AND TREATMENT, AND THEY STILL HAD A WAY TO GO FOR THE RECOVERY. THEY WERE MERELY AT THE BEGINNING WHICH SOME LIKEN TO A MARATHON OF TREATMENT AND WE KNOW HELEN IS EXPERIENCING PHYSICAL LIMITATIONS AS A RESUMMIT OF THE TRANSPLANT WHERE JOHN'S PHYSICAL EFFECTS CAME FROM HIM PUTTING HIS OWN HEALTHCARE NEEDS ASIDE TO BE THERE FOR HELEN. SO THIS BROUGHT ABOUT ROLE REVERSAL, JUN WAS USED TO WORKING AND SUPPORTING THE BOTH OF THEM WHILE HELEN WAS THE HOME MAKER AND SUPPORTING JOHN AND THE FAMILY'S NEEDS. SO WHEN JOHN STARTED DRINKING AND TAKING HER PILLS SHE WONDERED HOW MUCH MORE JOHN COULD TAKE AND IF SHE COULD TRUST HIM TO BE THE CAREGIVER SHE NEEDED AT THIS TIME IN HER LIFE. YOU CAN SEE HOW MANY FACETS OF THEIR LIFE WERE EFFECTED BY THIS CHANGE IN HELEN'S ILLNESS. TOGETHER AND BOTH INDIVIDUALLY THEY EXPERIENCE PHYSICAL, PRACTICAL, SOCIAL AND PSYCHOLOGICAL EFFECTS FROM THIS EXPERIENCE AND THEY'RE ALL SO CLOSELY INTERTWINED. SO JUST MOVING ON, I WANT TO SHARE CHANGE OVER TO TALK A LITTLE BIT ABOUT CARE GIVING AND WHAT WE KNOW AND THERE'S A QUOTE FROM ROSELYN CARTER WHO'S DONE CARE GIVING WORK AND SHE SAYS THERE'SA FOUR KINDS OF PEOPLE IN THIS WORLD. THERE ARE THOSE THAT HAVE BEEN CAREGIVERS THAT ARE CURRENT CAREGIVERS, TO BE CAREGIVERS OR WILL SOMETIME NEED A CAREGIVER. SO WE'RE ALL EFFECTED BY CARE GIVING SOMETIME IN OUR LIFE. SO I JUST WANTED TO SHARE WITH YOU ALL ABOUT WHAT WE KNOW, ABOUT CARE GIVING AND 2009, THE NATIONAL ALLIANCE FOR CARE GIVING IN ASSOCIATION WITH AARP, CONDUCTED TELEPHONE INTERVIEWS TO BETTER UNDERSTAND THE PREVALENCE, DEMOGRAPHICS AND ISSUES EXPERIENCED BY CAREGIVERS IN THE U.S., AND I JUST WANT TO START OFF BY SAYING THAT THEY DEFINE A CAREGIVER AS AN ADULT, THAT'S UNPAID CARE TO AN ADULT OR CHILD WITH SPECIAL NEEDS. AND THEIR LAST SURVEY THEY ESTIMATED THEY WERE APPROXIMATELY 66 MILLION PEOPLE SERVING AS INFORMAL CAREGIVERS IN THE U.S. THEY ALSO FOUND, WHICH IS SIMILAR TO WHAT WE SEE IN OUR RESEARCH THAT FAMILY CAREGIVERS ARE AWIVE MIDDLE AGED WOMEN HOWEVER WE CAN'T FORGET THAT A GOOD NUMBER OF OUR CAREGIVERS ARE ALSO MEN AND WE SEE ABOUT A 60-40 SPLIT OF FEMALES TO MALE CAREGIVERS AND I THINK TRADITIONALLY PEOPLE MAY CONSIDER CARE GIVING A NATURAL ROLE FOR WOMEN, WE ARE SEEING MORE AND MORE MEN SERVE AS CAREGIVERS. ALSO A GOOD NUMBER, THEY ALSO FOUND THAT A GOOD NUMBER OF THE CAREGIVERS IN THEIR STUDY WERE SANDWICHED, YOU KNOW? THEY'RE TAKING CARE OF SOMEBODY THAT'S YOUNGER OR OLDER AND NOT WELL IN THEIR FAMILY. AND YOU'LL NOTICE THE THREE MAIN CAUSES FOR NEEDING THE FORGIVER IS THE CASE TODAY WHICH IS ON THE INCOME. SO CAREGIVERS OFTEN GET INTO THIS BECAUSE THEY HAVE A COMMITMENT TO CARE AND THERE'S A VARIETY OF REASONS WHY THEY DO THAT. A STUDY BY WILLIAMS OF 40 INFORMAL CAREGIVERS OF TRANSPLANT RECIPIENTS FOUND THAT ASSUMING A CARE GIVING ROLE WAS NOT ALWAYS CONSIDERED A BURDEN FOR COMMITMENT. IN ADDITION A REVIEW BY GIBBONS ROSS, AND DR. BEVANS, FOUND THAT CAREGIVERS OFTEN MAKE THE COMMITMENT TO CARE FOR A LOVE ONE AND IT'S A POSITIVE EXPERIENCE FULFILLING THEM A SENSE OF DUTY OR SOME KIND OF RIGHT OF PASSAGE THAT THEY EXPECT TO FILL AND IT CAN--IT PROVIDES INSPIRON AND OPTIMIZE WHEN THEY'RE FACE WIDE A DIFFICULT DIAGNOSIS OR TREATMENT FOR A LOVED ONE. AND I CAN'T TELL YOU HOW MANY TIMES A CAREGIVER HAS COME UP TO ME AND INTERACTION AND OUR STUDIES AND SAID, I FELT LIKE FOR SOME REASON, GOD OR WHOEVER PUT ME HERE IN THIS SPACE JUST SO THEY COULD BE HERE TO SUPPORT THEIR LOVED ONE. SO, WHILE THE DECISION TO SERVE AS A CAREGIVER MAY BE BASED UPON PRIOR RELATIONSHIP WITH THE ONE THAT'S NOT WELL, THEY OFTEN TAKE ON THIS ROLE UNCONDITIONALLY AND ALSO WITHOUT FULL KNOWLEDGE ABOUT WHAT THEY'RE GETTING INTO OR WHAT THE EXPERIENCE IS FULLY GOING TO ENTAIL. AND IT MIGHT BE NOT UNTIL THEY'RE WELL WITHIN THAT EXPERIENCE THAT THEY TRULY REALIZE WHAT THEY'RE IN FOR. BUT INTERESTINGLY ENOUGH IS THAT, IN A RECURRENT TEAM IN THE LITERATURE IS THAT CAREGIVERS OFTEN GIVE SELFLESSLY AND PUT THE NEEDS OF THEIR LOVED ONE ABOVE THEIR OWN NEEDS THROUGHOUT THEIR CARE GIVING EXPERIENCE. SO THERE ARE POSITIVES TO CARE GIVING AND THERE ARE TWO STUDIES THAT REPORTOT BENEFIT FINDING CONCEPT AND THAT IMPACT OF THOSE BENEFITS ON THEIR CAREGIVERS, MENTAL ADJUSTMENT AND WHAT THEY FOUND IS BENEFIT FINDING CONCEPTS SUCH AS EXCEPTION WHICH DESCRIBE HOW WELL THEY CAN ACCEPT THINGS, THEY CAN'T CHANGE OR APPRECIATION FOR THEIR SUPPORTERS, FAMILY AND POSITIVE SELF-VIEW WERE ASSOCIATE WIDE THE CAREGIVERS AND EMPATHY AND REPRIORITIZATION AND EMPATHY IS DESCRIBED AS CARING FOR OTHERS AND REPRIORITIZATION, HAVING A SENSE OF PURPOSE AND FOCUSING MORE ON PRIORITY, HAD LESS MORE DEPRESSION AND VULNERABILITY AND NEGATIVE MENTAL, PSYCHOLOGICAL ADJUSTMENT ON THESE CAREGIVERS. AND AS YOU CAN IMAGINE, CARE GIVING IS NOT WITHOUT NEGFIVE EFFECTS AND I DON'T THINK WE WOULD BE HERE TODAY IF IT HAD ALL BEEN FIGURED OUT. AND THE BOOK OF THE EVIDENCE AND THE RESEARCH THAT'S BEEN DONE ON CANCER CAREGIVERS HAS BEEN IN EXPLORING THE NEGATIVE CONSEQUENCES OF CARE GIVING AND ON THE SLIDE THERE'S A SUMMARY OF MAJOR PROBLEMS ASSOCIATE WIDE CANCER CAREGIVERS, BUT IT COMES WITH SYSTEMATIC REVIEWS OF THE LITER THAT INCLUDES OVER 192 RESEARCH ARTICLES AND INCLUDES ALMOST 20,000 CANCER CAREGIVERS. THE FOCUS HAS BEEN ON THE NEGATIVE EFFECTS OR WHAT WE CAN SEE THE PHYSICAL SOCIAL, EMOTIONAL MANIFESTATIONS OF THE CAREGIV EXPERIENCE. BUT WHAT IS CONSISTENT IS THAT WHEN MORE PROBLEMS ARE EXPERIENCED, IT'S ASSOCIATE WIDE HIGHER--ASSOCIATED WITH HIGHER LEVELS OF DISSTRESS FOR THE CAREGIVERS AND CAN WE THINK ABOUT ABOUT CARE GIVING AND WHAT JON IS EXPERIENCING. SO NOT ONLY IS THERE EMOTIONAL AND PHYSICAL EFFECTS TO CARE GIVING BUT THERE'S ALSO A GROWING BODY OF EVIDENCE LINKING THE STRESS OF CARE GIVING AS A RISK FACTOR FOR CARDIOVASCULAR ILLNESS AND DISEASE FOR CARE GIVES. ONE STUDY FOUND THAT IN A GROUP OF CARE GIVE GIVERS, TAKING CARE OF SOMEONE THAT WAS CHRONICALLY ILL, THE HOURS A WEEK, THE DEMAND, THE CARE PROPROVIDED AND THESE WERE INCREASED RISK FOR MORTALITY AND SOME FOUND THAT SPOUSAL CAREGIVERS WITH PATIENTS FOR CARDIOVASCULAR DISEASE, WERE AT RISK JUST BECAUSE OF THEIR CARE GIVING ROLE. AGGARWAL ET AL FOUND THAT CVD MORBIDITY AND MORTALITY COMPARED TO NONCAREGIVERS. AND THEN FINALLY LEE AND ALL, RISK OF CAD IN THE U.S., THEY WERE REPORTED TO BE HEALTHY, SO THEY DIDN'T HAVE HEART DISEASE OR CARDIOVASCULAR EVENTS OR CANCER AT BASELINE. BUT THESE NURSES WERE AT INCREASE RISK OF FATAL AND NONFATAL CARDIOVASCULAR EVENTS THEY WERE PROVIDING JUST NINE HOURS OR MORE CARE TO A LOVED ONE AND THIS IS OUTSIDE OF THEIR PROFESSIONAL CARE GIVER ROLE AND CONSIDER THE HOURS OF CARE THAT JOHN IS PROVIDING SIMPLY FOR OUT-PATIENT FOLLOW UP, IT'S WELL, EXCEEDING WHAT THESE NURSES REPORTED. SO AS YOU HEARD AND CAN IMAGINE, BURRED SEN ILLEGALSEN COMPLEX AND THEY HAVE MANY THINGS THAT COMPETE WITH THEIR TIME, ATTENTION, AND THEY CAUSE ANXIETY, DEPRESSION, WORRY AND THEY CHANGE THE WAY THEY TAKE CARE OF THEMSELVES BECAUSE OF THE ADDED RESPONSIBILITY THEY TAKE ON. AND THERE'S ALSO MOUNTING EVIDENCE THAT CAREGIVERS HAVE PHYSICAL AND HEALTH CONSEQUENCES BECAUSE OF THEIR CARE GIVING ROLE. SO BASED ON THE EVIDENCE IN THE CASE THAT I PRESENTED IN THE LITERATURE, WHAT WOULD YOU CONSIDER, AND I ASK YOU TO CONTEMPLATE WHAT YOU CONSIDER TO BE REASONABLE, PROASHT AND FEASIBLE IN ORDER TO SUPPORT HELEN AND JOHN THROUGH THIS EXPERIENCE? AND I WILL TURN IT OVER TO MARGARET NOW. [ APPLAUSE ] >> I JUST WANTED TO REITERATE HAPPY NURSES WEEK FOR THOSE WHO CAME OUT AND ANYONE WATCHING ON THE VIDEOCAST. THERE WENT MY MICROPHONE. THERE WE WILL BE OKAY. I AM ALSO REFLECTING THE FELTINGS OF LESLIE AND MYSELF, WE ARE HONORED TO BE HERE TODAY REPRESENTING THE NURSING DEPARTMENT, SO THANK YOU ALL THE DOCTORS AND OTHERS WHO GAVE US THE OPPORTUNITY TO SHARE IT WORK AND BE HERE AS REPRESENTATIVES FOR THE DEPARTMENT. OKAY, SO NOW THAT YOU HEARD THE SUMMARY OF A CAREGIVERS EXPERIENCE, IT'S REALLY MY RESPONSIBILITY TO SET THE STAGE FOR OUR DISCUSSIO AND WHAT LESLIE AND I ARE TRYING TO DO TODAY IS ABOUT 15 MINUTES AT THE END FOR DISCUSSION WITH YOU, TURN UP THE LIGHTS AND HAVE DIALOGUE ABOUT THINGS YOU THINK ARE FOR PROVIDERS. I WANT TO OFFER WAYS TO THINK ABOUT THE OBLIGATION OR IF WE HAVE AN OBLIGATION TO INCLUDE THESE ISSUES WITH THE CAREGIVER AND THEN TO GIVE ATTENTION TO THE CAREGIVER'S NEEDS. ULTIMATELY, I WANT YOU TO CONSIDER THE RESPONSE THAT YOU JUST STARTED GENERATE NOTHING YOUR HEAD TO LESLY'S QUESTIONS ABOUT SORPT SUPPORT IN FOLLOWING IN LIGHT OF THE FOLLOWING POINTS WE'RE GOING TO DISCUSS. SO TO START, I REALLY WANT TO VERMEN INFECTED VIEW WHAT I'M CALLING--SET OF ASSUMPTIONS I CALL THE THAT WOULD BE THINGS ARE TRUE ASK THESE ARE POINTS THAT REALLY CREATE THE CONTEXT FOR WHAT WE DO AS PROVIDERS AND FOR OUR DISCUSSION TODAY. I'M ALSO GOING TO INTRODUCE THIS CONCEPT OF A DIAD THAT YOU SEE HERE. AND THE FIRST DYAD, THAT WE WILL TALK ABOUT IS THE PROVIDER PATIENT DYAD, WHICH IS ONE THAT WE'RE MOST FAMILIAR WITH. AND THIS IS THE INTENT OF OUR PRACTICE RESEARCH SIS TO SERVE THE PATIENT WHO COMES FORWARD AND THERE'S A LOT OF SORT OF GENERAL UNDERSTANDING OF THAT RELATIONSHIP BUT I THINK WE CAN ALL AGREE THAT IT'S ALMOST ALWAYS TRUE THAT THE COMPETENT--AND THE CASE OF TODAY'S PRESENTATION, WE'RE TALKING ABOUT AN ADULT PATIENT WHO IS--YEAH, AN ADULT PATIENT AND AICALITY CAREGIVER. THERE ARE A LOT OF ISSUES WE COULD TALK ABOUT WITH PEDIATRIC PATIENTS AND ADULT CAREGIVERS AND WE CAN HOPEFULLY HAVE THAT DISCUSSION AS WELL, BUT FOR THE PURPOSES OF TODAY, IT'S JUST COMPETENT ADULT PATIENT WHO IS DETERMINE THAD A DEGROOVE FAMILY INVOLVED THAT THEY WANT--THEY MADE THE DECISION WHEN WE ASK CAREGIVER WOULD BE.O THAT THAT'S NOT SOMETHING WE CHOOSE. BUT WE DO HAVE TO RECOGNIZE THAT THAT CAREGIVER OR THE FAMILY IS INDEED PART OF THE PROVIDER PATIENT DYNAMIC AND WE CAN'T IGNORE THAT AND THAT'S BEEN SOME REPORTS FROM THE LITERATURE THAT PHYSICIANS AND I WISH, I SHOULD SAY HERE NOW, I WISH THERE WAS MORE INFORMATION IN THE LITERATURE ABOUT OTHER DISCIPLINES AND THIS DYNAMIC BUT MOST OF IT TODAY IS AROUND THE RELATIONSHIP, THE PHYSICIAN AND THE PATIENT. I'LL BE USING THE PHYSICIAN AND PROVIDER LIBERALLY TODAY IF YOU WILL BECAUSE I THINK I WANT TO CHALLENGE ALL OF YOU, I DO WANT TO CHALLENGE ALL OF YOU TO THINK ABOUT THE OTHER DISCIPLINES THAT WE ARE PROBABLY SITTING HERE TODAY IN THE AUDIENCE THAT ALSO HAD SOME OF THESE SAME ISSUES. BUT THE PHYSICIAN SPECIFICALLY IN A STUDY THAT WAS REPORT INDEED 2006, 84% OF THEM REPORT THAD INDEED, IT IS DIFFICULT WHEN YOU HAVE THIS CAREGIVER OR THIS OTHER FAMILY MEMBER PRESENT WHEN THEY'RE TRYING TO HONOR THE PATIENT PROVIDER DYNAMIC. THERE'S A FEW OTHER SSUSMGZS I WANT TO BRING UP AS WELL AND THAT IS THAT OUR SCOPE OF PRACTICE IS ALIGNED WITH THE PATIENT WHO CAME TO US TO RECEIVE CARE. IT'S NOT ALINED WITH THE PATIENT, WITH THE CAREGIVER WHO JUST HAPPENS TO BE WITH THAT PATIENT. AND SO IT AUTOMATICALLY PUTS THE PATIENT, THE CAREGIVER IN A POSITION OF PATIENT RESOURCE AND NOT AS AN INDIVIDUAL. THEY'RE NOT THERE BECAUSE THEY HAVE SPECIFIC NEEDS AND SOUGHT US OUT TO ADDRESS THIS NEED WITH THEM. THEY'RE THERE TO BE A PARTNER WITH THE PATIENT. AND EVEN OUTSIDE OF--I SHOULD SAY A BIT HERE BUT NOT SO MUCH BECAUSE WE DON'T HAVE REIMBURSEMENT ISSUES BUT THE DYNAMIC'S TRUE HERE, BUT OUTSIDE OF HERE WHERE THERE'S REIMBURSEMENT, WHERE THERE'S HIGH TO THE SERVICES WE PROVIDE AS PROVIDERS, THIS IS VERY CHALLENGING BECAUSE THE PROVIDERS MAY NOT BE IN A POSITION TO CHARGE FOR THE SERVICES THAT MAY BE NEEDED BY THE CAREGIVER. TWO OTHER THINGS I WANT TO MENTION AND ONE IS THAT I THINK WE CAN ALL AGREE THAT JOHN AND HELEN ARE GOING THROUGH A VERY DIFFICULT TIME AND WE CAN PROBABLY AGREE THAT ILLNESS IS NOT EXPERIENCED BY AN INDIVIDUAL, IT'S EXPERIENCED BY A FAMILY ASSUMING THERE ARE OTHERS IN THEIR LIFE WHO CARE ABOUT THEM ENOUGH TO BE EFFECTED BY THIS, THE ILLNESS, AND THE TREATMENT THAT THEY'RE UNDERGOING AND I ALSO DON'T WANT TO LOSE SIGHT OF THE FACT THAT CULTURE PLAYS A SIGNIFICANT ROLE IN THE WAY THAT WE INTERACT OR COMMUNICATE WITHIN OUR FAMILIES AND HOW WE MIGHT INTERACT WITH INDIVIDUALS OUTSIDE OUR FAMILIES ESPECIALLY HEALTH CARE TEAMS. SO ALL OF THESE ARE SORT OF LAID AS A FOUNDATION OF ASSUMPTIONS THAT I WANT YOU TO THINK ABOUT AS WE GO ON. A FEW OTHER POINTS I DON'T WANT TO LOSE SIGHT OF ARE THINGS THAT GUIDE OUR PRACTICE AS HEALTHCARE PROVIDERS. ONE OF THEM IS DOING GOOD, RIGHT? OUR OBJECTIVE HERE IS TO TAKE ACTION TO BE HELPFUL AND TO BALANCE THAT, WITH NOT CAUSING HARM WHILE WE ARE TRYING TO BE HELPFUL. SO THESE ARE GUIDING PRINCIPLES I THINK FOR ALL OF US AND AS SUCH WE HAVE TO DISCUSS THE FACT THAT ARE THESE GIDDING PRINCIPLES THAT JUST APPLY TO HELEN IN THIS CASE. OR ARE THESE PRINCIPLES THAT ALSO APPLY TO JOHN IN THIS CASE. SO THAT WOULD CHALLENGE US TO THINK ABOUT THEM MORE BROADLY AS A MORAL OBLIGATION JUST AS A HUMAN BEING, NOT NOT AS A PROVIDER THAT'S IN A RELATIONSHIP WITH THE PARTICULAR PATIENT. SO WITH THAT IN MIND AND I KNOW HAVE YOU SMORE EXPERTISE THAN I DO WITH THESE CHALLENGES, SO I WANT TO SAY PLEASE SHARE YOUR PERSPECTIVE ON THOSE AT THE END OF THE PRESENTATION, AND FOR THE PURPOSES OF TODAY'S DISCUSSION, I WILL JUST FOCUS ON TWO. AND THOSE TWO ARE HERE ON THE SLIDE, SO FIRST AND FOREMOST, WHAT IS THE CHALLENGE OF RESPECTING PATIENT AUTONOMY AND THAT OF COURSE IS HELEN IN THIS CASE, RECOGNIZING THAT THE PATIENT, EVEN THOUGH SHE'S HER OWN AUTONOMOUS AND WE NEED TO RESPECT THAT, SHE IS HERE WITH A CAREGIVER. SO SHE'S BEING--WE HAVE TO RESPECT HER AUTONOMY IN THE CONTEXT OF THE RELATIONSHIP THAT IS BEFORE US. AND THEN THE SECOND POINT THAT I'LL SPEND A LITTLE BIT OF TIME ON IS DO WE HAVE A RESPONSIBILITY TO ADDRESS THE NEEDS OF THE CAREGIVER? AND IF SO, WHAT IS THE SCOPE OF THAT RESPONSIBILITY? SO AGAIN, SOME OF YOU, IF ANYONE HERE FROM THE ETHIC DEPARTMENT, THEY COULD RECITE THESE DEFINITIONS RIGHT OFF THE TOP OF THEIR HEAD, I'M SURE. BUT FOR SOME OF US, IT WASN'T QUITE AS OBVIOUS. SO I WANT TO DESCRIBE AUTONOMY. SO THIS IS THE CAPACITY TO BE ONE'S OWN PERSON, MOTIVES AND LIVES AND NOT THE PRODUCT OF MANIPULATING OR EXTORTING FORMAL PROCESSES, NOW I'M NOT SAYING JOHN IS MANIPULATIVE, AND HE'S NOT A DISTORTING FORCE DESPITE BEING HER HUSBAND, BUT IT'S IMPORTANT TO RECOGNIZE AND WE DO WHEN WE'RE IN RELATIONSHIP INFLUENCE EACH OTHER. WE RECOGNIZE IN THIS CASE, THAT HELEN IS THE PATIENT, THAT THERE IS A RELATIONAL AUTONOMY WE SHOULD BE UNDERSTANDING BECAUSE AUTONOMY CAN BE AND OFTEN IS IN LIGHT OF THE FAMILY AND COMMUNITY TIES BOTH AS INDIVIDUALS, CULTURALLY AND IN OUR SOCIAL ENVIRONMENT. SO HAVING SAID THAT I WANT TO GO ON AND TALK ABOUT THE FIRST CHALLENGE WHICH IS RESPECTING HELEN'S AUTONOMY AND I WANT TO TAKE THE OPPORTUNITY TO USE A SECOND DYAD, WE HAVE A PATIENT AND A CAREGIVER WITH THE RESPONSIBLE COMMITMENT TO EACH OTHER. HOW DO WE THEN THINK ABOUT RESPECTING THE PRINCIPLE AUTONOMY FOR HELEN AND STILL RECOGNIZE AND HONESTLY HONOR THE DEPENDENCY INHERENT IN THIS CASE, AND HELEN NEEDS JOHN TO BE PRES SPENT WE IN HEALTHCARE OFTEN ASK CAREGIVERS TO TAKE ON A ROLE IN INSURING QUALITY CARE. SO THE CAREGIVERS DON'T NECESSARILY SEE IT AS AN OPTION, AS LESLIE POINTED OUT, THER PARLIAMENT OF OUR TEAM AND THAT'S BEEN SHOWN ACROSS MANY STUDIES AND IT'S IMPORTANT THAT THE CAREGIVER OR FAMILY ARE INVOLVED. SO ARE WE ASKING JOHN TO GIVE UP AUTONOMY AS A CAREGIVER, ARE THERE NEEDS LOOKED AT IN PARALLEL TO EACH OTHER? AND WE RECOGNIZE AND WE ASK JOHN TO BE THERE IN PROMOTING AND INSURING THE BEST CARE FOR HELEN AND WITH THAT COMES THE NEED FOR HIM TO HAVE IS SHE INFORMATION. FOR EXAMPLE THERE ARE SKILLS HE NEEDS TO LEARN TO INSURE HE CHANGES HER LINES WELL AND MEDICATIONS AND OFTEN MEDICATIONS PREVENT PEOPLE BEING ABLE TO DRIVE AND HE, HE NEEDS TO ALIGN OTHERS TO GET HER TO THE CLINIC TO MAKE SURE SHE GETS THE CARE SHE NEEDS. ANOTHER WAY OF LOOKING AT THE IMPACT ON THE CARE GAVE IS TO RECOGNIZE THAT THE THINGS THAT WE DECIDE WITH THE PATIENTS NEED TO OCCUR TO INSURE THEY ARE GETTING THE BEST CARE POSSIBLE MAY IMPACT THE CAREGIVER IN A NEGATIVE WAY. THINGS LESME MENTIONED, CLINIC APPOINTMENTS, TWO-THREE TIMES A WEEK, SHE DESCRIBES THE NUMBER OF HOURS THAT MIGHT BE INVOLVED IN JUST BEING AT THE HOSPITAL AND THAT EFFECTS HIS ABILITY TO WORK COULD EFFECT HIS ABILITY TO WORK, QUALITY OF LIFE AND OVERALL COULD EFFECT HIS HEALTH. SO HOW ARE WE SENSITIVE TO THE BALANCE OF THE NEGATIVE EFFECTS BETWEEN THE CAREGIVER AND THE POSITIVE EFFECTS TO HELEN WHEN WE DEVELOP THE PLAN OF CARE? CLEARLY HEWNICATION PLAYS A HUGE ROLE IN THIS AND IT'S A--COMMUNICATION PLAYS A HUGE ROLE IN THIS AND IN THE DYNAMICS OF PROVIDER AND PATIENT, AS WELL AS PATIENT AND CAREGIVER, SO THERE WAS AN ARTICLE PUBLISHED TALKING ABOUT TWO POTENTIALLY FATAL ERRORS THAT PROVIEDMANNERS MAKE AND AGAIN I USE THE WORD PROVIDER BECAUSE TALKING ABOUT PS, AND WORK AND OTHERS DISCIPLINES IN THE ROOM WILL ADMIT THESE HAPPEN ACROSS DISCIPLINES AND THAT IS OUR TYPE ONE ERROR, WHICH IS WHEN THE DOCTOR OR PROVIDER EXCLUDES THE CAREGIVER FROM DECISION MAKING AND INFORMATION THAT'S BEING SHARED. I THINK ALL OF US CAN TAKE A MOMENT TO REFLECT ON HOW MANY TIMES WE'VE DONE THIS, ESPECIALLY WHEN THE CAREGIVER FOR THE PATIENT IS A HEALTHCARE PROVIDER THEMSELVES. IT IS NICE TO SHARE INFORMATION IN A WAY THAT IS PART OF OUR USUAL TALK AND ASSUME THAT THE THAT CAREGIVER WILL HELP THE PATIENT WITH THE UNDERSTANDING OF THAT INFORMATION THAT WE'RE MORE COMP FORTABLE SHARING WITH THE CAREGIVER. THE CONCLUSION FROM THE PAPER WAS REALLY THAT WE NEED TO FRAME THE CONVERSATION THAT WE HAVE IN THE RELATIONSHIP--RELATIONAL SITUATION. THE CHALLENGE I POSE HERE IS WHAT DOES THAT IMPACT TO ALL OF YOU AS A PROVIDER WHO NOW HAVE TO FIND TIME TO ADEQUATELY CLAYS ADDRESS THE INDIVIDUAL NEEDS AS WELL AS DYADIC NEEDS THAT ARE PRESENT IN ALL OF US HAVING VERY BUSY SCHEDULES AND MANAGING MANY, MANY PATIENTS. SO THE SECOND CHALLENGE I WANT TO TALK ABOUT REALLY TURNS TO OUR RESPONSIBILITY TO CARE FOR JOHN. SO I HAVE A FEW POINTS ON HERE I WANT TO MENTION BRIEFLY, SOME OF THEM I TALKED ABOUT BRIEFLY, SUCH AS SCOPE OF PRACTICE REMEMBER JOHN DIDN'T SEEK US OUT TO HELP HIM WITH HIS MENTAL HEALTH CHALLENGES OR CONDITIONS. IN THIS PARTICULAR SCENARIO, HEMATOLOGISTS ONCONNURSES AND SUCH WHO ARE NOW DEALING WITH A LEVEL OF MENTAL ILLNESS THAT CAN BE DIFFICULT TO MANAGE. HOW DID WE COME UP WITH THIS INFORMATION ABOUT JOHN. DID WE NOTICE THAT HE SMELLED LIKE ALCOHOL WHEN HE CAME IN TO TAKE HELEN HOME? DID HE ACTUALLY REPORT TO US THAT HE HAD A PROBLEM AND NEEDED OUR HELP? OR DID HELEN JUST SAY TO US, MY HUSBAND'S GOT A PROBLEM, THIS IS WHAT IT IS AND I NEED YOU TO HELP ME. AND I THINK IT REALLY DOES EFFECT THE WAY THAT WE DEAL WITH THIS INFORMATION DEPENDING ON HOW WE ACTUALLY COME ABOUT IT. AND THEN THE CHALLENGE AND WE HAVE HAD THIS IN OUR EXPERIENCES WHERE THE CAREGIVER TELLS YOU SOMETHING ABOUT THEIR OWN STRUGGLES AND SAYS, PLEASE DON'T TELL ME WIFE. SHE KNOWS I HAVE PROBLEMS BUT I DON'T NEED HER TO DEAL WITH THIS RIGHT NOW. BUT IF YOU UNDERSTAND THAT THAT CONDITION MAY INDEED EFFECT HELIOS POSITIVE KNOW'S QUALITY CARE, HER ABILITY TO GET TO THE HOSPITAL SAFELY WHEN SHE STARTS RUNNING A FEVER IN THE MYTH OF THE NIGHT HER HER ABILITY TO STAY ON HER IMMUNO SUPPRESSIVE MEDICATION BECAUSE SHE'S NOT FEELING WELL BECAUSE SHE'S TOO FATIGUED TO BE AWAKE TO TAKE HER DRUGS ON TIME. TELL EFFECT HER ABILITY TO GET THROUGH THE TRANSPLANT AND RECOVER SUCCESSFULLY? YOU TAKE THAT INFORMATION TO THE TEAM. YOU LET OTHER WHO IS ARE IN CHARGE OF HER DISCHARGE TO UNDERSTAND THAT WE MIGHT BE SENDING HER HOME TO A SITUATION THAT'S NOT OPTIMAL. HOW DO WE REALLY THINK ABOUT JOHN'S ABILITY AND HIS ISSUES IN THE CONTEXT OF HER CARE? SO I HAD ON THE BOTTOM OF THAT SLIDE AS WELL, THIS INTERVENTION CONTINUUM AND I WILL SPEND A MOMENT GOING OVER THAT. SO THEY THINK THERE'S A CHALLENGE TO US AS PROVIDERS INTENDED TOKING HELPFUL AND NOT CAUSE HARM. TO TAKE ACTION. I THINK IT'S VERY COMPLEX, ESPECIALLY IN THE CAREGIVER IS NOT IN AN ENVIRONMENT THAT THEY'RE USED TO. NOW JOHN IS EVEN THOUGH THEY'RE A DISTANCE FROM US, HE'S IN HIS COMMUNITY SO HOPEFULLY, RIGHT? HE HAS ACCESS TO THE USUAL PROVIDERS HE MIGHT BE ABLE TO SEE, FEEL COMFORTABLE THAT IS RIGHT THAN THE TIME AWAY FROM HELEN, GETTING SERVICES FROM, BUT MANY TIMES WITH THE TRANSPLANT CAREGIVERS, PATIENTS AT LARGE, THEY OFTEN COME AWAY FROM THE COMMUNITY FOR THREE-FOUR MONTHS AND IF THEY'RE HERE AND DON'T HAVE USUAL REPORTS IN PLACE, USUAL MEDICAL PROVIDERS THEN THE CHALLENGES ARE EVEN GREATER. SO I SUGGEST TO YOU WHEN YOU THINK ABOUT TAKING ACTION THAT WE COULD JUST PROVIDE EDUCATION. WE COULD SAY IT'S OUR JOB TO INFORM JOHN ABOUT THE ISSUES AND THE PROBLEMS THAT MIGHT OCCUR IF YOU WERE TO ABUSE ALCOHOL, TAKE MEDICATIONS THAT AREN'T PRESCRIBED FOR HIM AND SUCH AND THEN ASSUME THAT SORT OF IN A PREVENTION MODEL HE WILL TAKE TO ACTION TO DO THE RIGHT THING FOR HIMSELF. THAT'S ONE WAY TO THINK ABOUT WHAT WE ARE--OUR RESPONSIBILITY MIGHT BE. ANOTHER IS TO SCREEN OR IDENTIFY OTHERS OR STRESS PROBLEMS ASK WE DO A GOOD JOB OF THIS IN OUR INITIAL ENCOUNTERS WITH PATIENTS IN GENERAL, BOTH HERE AND IN THE COMMUNITY WHEN I TALK TO COLLEAGUES AT MEETINGS AND IMPLEMENTING A CERTAIN PRACTICES INTO OUR CENTERS TO MAKE SURE WE'RE PROVIDING THE HIGHEST QUALITY OF CARE. EVERYBODY SEEMS TO BE PUTTING ALL HANDS ON DECK WHEN PEOPLE ARE INTERESTING OUR SYSTEM. BUT WE'RE NOT DOING A VERY GOOD JOB AND WE DON'T HAVE THE EVIDENCE TO SUGGEST WE SHOULD DO THINGS DIFFERENTLY JUST YET, THAT ALONG THE CONTINUUM OF TREATMENT, WE SHOULD BE REEVALUATING THE IMPACT TO THE CAREGIVER AND HOW THAT MIGHT BE AFFECTING THE PATIENT. WE HAVE TO THINK ABOUT THE IMPACT ON RESOURCES, HERE ARE VERY, VERY BUSY, WE HAVEN'T PERSPECTED THIS SCREENING OF PATIENTS AT DIFFERENT TIME POINTS FOR THIS STRESS ACROSS OUR DISCIPLINE. HOW ARE WE GOING TO ADD ONE MORE INDIVIDUAL OR ACTION IN THERE AND IT'S IMPACT ON OUR CLINICS AND ON OUR PROVIDER. WHEN YOU THINK ABOUT ADVICE, IT'S EASY IF JOHN COMPLAINS OF SLEEP DISTURBANCE IT'SACY TO TALK TO HIM ABOUT OVERTHE COUNTER MEDICATIONS HE MIGHT BE ABLE TO TAKE. IT MIGHT BE EASY TO SAY, JOHN YOU'RE HAVING CHALLENGES HERE, LET ME RIGHT YOU A REFERRAL OR GIVE YOU RESOURCES IN THE COMMUNITY SO YOU CAN SEEK CARE. THAT WOULD BE AN INDEPENDENT REFERRAL. BUT WE HAVE TO THINK ABOUT ALL THE EXPERT PROVIDERS IN OUR AGENCIES AND I'M DO NOT MEAN TO REFLECT THAT HERE AT THE CLINICAL CENTER IS REALLY THAT MUCH DIFFERENT THAN IN THE COMMUNITY BECAUSE IT'S NOT. WHEN I HAVE CONVERSATIONS IT'S ABOUT THE TRANSPLANT TEAM SAYING THIS, IS A SOCIAL WORKER THIS, IS A PSYCHIATRIST OR PSYCHOLOGIST TO SEE THIS PATIENT DURING THIS PERIOD OF CARE. AND THEN SOME OF US ARE ABLE TO ASS, DIAGNOSE AND TREAT BUT AGAIN WE HAVE TO THINK BACK TO THAT SCOPE OF PRACTICE I TALKED ABOUT EARLIER. SO I ASK YOU, DEPENDING ON WHAT WE FEEL WE SHOULD DO IN TAKING ACTION, IF ANYTHING, IS THERE A RISK OF POTENTIAL HARM TO HELEN IF WE DON'T? NOW AGAIN THERE ARE ISSUES WITH THIS AND SHARON MITNICK WITH OFFERS INSIGHT ON HOW TO THINK ABOUT THIS ISSUE. IT'S VERY WELL WRIT EXTEN VERY SORT OF STEP-BY-STEP IN HOW YOU CAN INCORPORATE SOME OF THESE IN YOUR PRACTICE. SO YES, RESPECTING THE PATIENT AUTONOMY IS IMPORTANT IN THESE GUIDANCES, AND ALTHOUGH THE FAMILY MAY ALWAYS BE PRESENT WE SHOULD THINK ABOUT WAYS TO HAVE PRIVATE EXCHANGES WITH THE PATIENT TO REALLY INSURE THAT THE PATIENT'S WISHES ARE BEING FOLLOWED. THE RECOMMENDATION IS THAT WE INSURE ACCURATE UNDERSTANDING OF THE PATIENT AND THE CAREGIVER IF WE WANT TO MAKE SURE THAT THE PATIENT'S CARE IS OF THE HIGHEST QUALITY AND THAT WE SEE AND VALUE THE CAREGIVER AS A SOURCE OF CONTINUITY AND I THINK FOR ANY OF US WHO SERVED AS CAREGIVERS FOR FAMILY MEMBERS WE REALIZE HOW TRUE THIS IS, AND MAKING SURE THE INFORMATION, THE HISTORY AND ALL OF THE REPORTING OUT IS VAL AND I HAD ACCURATE WHEN WE GO TO SEE OUR PROVIDERS. WE NEED TO VALIDATE THE CAREGIVER ROLE OVER TIME TMAY CHANGE. THERE ARE OFTEN MORE THAN ONE CAREGIVER AND TRANSPLANT, ABOUT 50% OF THE CASES ARE WITH TEAMS OF CAREGIVERS, NOT JUST A PRIMARY OR SOLE CAREGIVER. WE NEED TO CONSIDER GOING THROUGH THESE GUIDANCES THAT OUR PLANS APPEAR AND INCLUDE THE APPROPRIATE RESOURCES FOR CAREGIVERS THEIR PIECE. WE NEED TO BE ALERT TO THEIR DISTRUSS AND WE THEY'D TO MAKE INDEPENDENT REFERRALS, THAT'S WHAT THIS GUIDANCE RECOMMENDS. WE THEY'D TO HONOR THE FACT THAT ALL CAREGIVERS ARE NOT PRESENT BUT MAY BE EFFECTED. AND THAT WE SHOULD DRAW APPROPRIATE BOUNDARIES WHEN THE CAREGIVERS ARE ALSO PROFESSIONAL CAREGIVERS TO AVOID THAT TYPE TWO AREA IF YOU WILL THAT I MENTIONED EARLIER. SO TO YOU, I SAY, CAN WE REALLY DO THIS? CAN ALL OF US ACROSS ALL DISCIPLINES DO THIS? IS THERE ENOUGH TIME? WHAT IS THE IMPACT TO ALL OF YOU IF YOU WERE ASKED TO DO THIS AND THIS BECAME OUR MINIMAL STANDARD? AND WHAT IS THE IMPACT TO OTHER PATIENT FIST THEY ALL HAVE THESE NEEDS? SO WE HAVE ABOUT 15 MINUTES. SO I WILL SHARE THESE SUMMARY POINTS IF YOU WILL, AS PROVOCATIVE QUESTIONS AND I HOPE YOU WILL COME TO THE MICROPHONES AND SHARE WITH US YOUR THOUGHTS ABOUT THIS CASE. SO FIRST AND FOREMOST ARE THE ASSUMPTIONS WE MADE IN THE BEGINNING ACCURATE? CAN WE TOLERATE A SHIFT THAT JOHN IS MORE THAN THE RESOURCE FOR HELEN? ARE WE JUST ASKING TOO MUCH OF JOHN IF IT'S THAT OVERWHELMING? HOW CAN WE BALANCE THE RESPECT FOR HELEN'S AUTONOMY WHILE INCORPORATING JOHN TO INSURE THE BEST CARE FOR HELEN? CAN WE INSURE QUALITY CARE TO HELEN WITHOUT ADDRESSING JOHN'S HEALTH PROBLEMS? AND DO WE NEED TO CONSIDER THE IMPACT ON PROVIDERS. --ON PROVIDER? S. >> SO WITH THAT I OPEN THE MICROPHONES FOR QUESTIONS. I'M CURIOUS TO HEAR THOUGHTS AND LESLIE AND I ARE HERE TO RESPOND ACCORDINGLY. THANK YOU. [ APPLAUSE ] >> I'M THRILLED TO HERE THAT YOUR STUDIES HAVE REQUIRED WHAT IS THE IMPACT OF ILLNESS OR SPOUSE OR LOVED ONE. I THINK SOMETIMES SOMEONE ASKS HOW ARE YOU DOING WHEN THEY CARE GIVE FOR A PATIENT OR LOVED ONE WITH A SERIOUS DISEASE. AND ONE THING YOU SORT OF TANGENTIALLY TOUCH OFFICE OF DIVERSITY AND BUT I DON'T THINK YOU HIT IT HARD ENOUGH FOR MY BIAS IS WHAT IS THE IMPACT OF YOUR LOVED ONES ILLNESS ON YOUR LIFE. WHAT'S YOUR FEAR? IS YOUR FEAR THAT YOU GOING TO LOSE THE PARTNER AS YOU USE THE PARTNER? ARE YOU GOING TO LOSE A SEXUAL PARTNER? IS YOUR LIFE GOING TO BE COMPLETELY CHANGED? I DON'T THINK WE TALK ENOUGH ABOUT THOSE PERSONAL IMPACTS ON THE--OT OTHER HALF OF THE DYNAMICS. SO IT'S GREAT THAT YOU BROAD THESE UP BUT I'D LOVE TO HEAR YOUR COMMENTS AS TO WHAT YOU THINK ABOUT DELVING INTO, AND THEY CAN'T GET TO NUMBER OF HOURS THEY WORK OR SOMETHING MUCH MORE COMPLEX. >> I THINK THAT'S AN EXCELLENT POINT. I WOULD CHALLENGE US ABOUT HOW TO HAVE THE PROBLEM WITH THE PATIENT. BECAUSE I THINK WE OFTEN GET--I THINK WE ALL AND BY NO MEANS ARE SAYING WE'RE INSENSITIVE BECAUSE I THINK WE'RE ALL EXCELLENT PROVIDERS, I HAVE NO DOUBT BUT I THINK IT'S HARD TO TALK ABOUT INTERNATIONAL CLASSIFICATION MASCULINIZED SCHESEXUALITY AND FEAR OF DEATH WHEN WE'RE STRIVING FOR CURE, AND GETTING YOU BACK TO NORMAL AND GET TO REHAB AND HAVE THIS OTHER GOAL. AND SO I THINK WE STRUGGLE IN OUR CONVERSATIONS WITH THE INDIVIDUAL PATIENT MUCH LESS BRING THE DYAD, IF IT'S A SPOUSE AT DYAD, IT'S EASIER LIKE THAT WOULD BE MORE OBVIOUS AND BRING THEM TOGETHER AND SAY, OKAY, NOW THAT WE'VE HAD THESE CONVERSATIONS CAN WE NOW REALLY HAVE AN OPPORTUNITY TO TALK ABOUT THESE ISSUES THAT MIGHT BE ALMOST MORE--MORE THE MECHANISMS THAN SOME OF YOUR EMOTIONAL DISSTRESS. I THINK ONE OF THE THINGS WE GIVE OURSELVES A BREAK ON IF YOU WILL IS WE EACH CAN'T DO IT ALL. WE HAVE A LIMIT TO OUR SCOPE OF PRACTICE AND THAT'S WHEN WE HAVE TO REALLY LEAN ON OUR MULTIDISCIPLINARY TEAM IS TO BRING THEM IN AND LET THOSE WHO ARE EXPERT AT THOSE PEOPLE ARE CONVERSATIONS BE PRESENT. AND THE PHYSICIAN OR THE NURSE WHO RESPONSIBLE FOR THE IMMEDIATE CARE MAY NOT BE THE BEST PERSON TO HAVE THE DEPOSITION OF THAT CONVERSATION. >> THANKS AGAIN FOR A GREAT AND IMPORTANT TALK, I'M CHRIS I'M A GERONTOLOGYST, WE WORK ON SOME OF THESE CARE GIVING ROLES. IT OCCURRED TO ME THAT JOHN PRESENTS WITH A PARTICULARIME TYPE OF ROLE AS ROLE AQUESTION ESTIMATE THAD ENSEL AND PERHAPS HELEN MIGHT HAVE EXPECTED TO TAKE CARE OF JOHN. SO YOU HAVE THIS WHAT YOU DRIBBED AS ROLE REVERSAL AND MY QUESTION IS: WHEN WE TALK ABOUT THE IDEA OF VALIDATING THE CARE GIVING ROLES IN A CLINICAL SETTING, HOW MUCH CONVERSATION SHOULD THERE BE WITH RESPECT TO HOW THAT PERSON FELL INTO THEIR ROLE TO BEGIN WITH AND WHETHER OR NOT THAT MATTERS WITH THE BROADER CAREGIVER PROCESS. , I THINK THAT'S A GREAT POINT. I'VE HEARD CONVERSATION ABOUT SORT OF INCORPORATING THAT POINT IN THAT INITIAL ENCOUNTER LIKE, YOU KNOW WHAT IS YOUR RELATIONSHIP, HOW DID YOU MAKE THE DECISION ABOUT CAREGIVERRING OR THAT YOU WOULD BE THE CAREGIVER BUT I HAVE NONAPOPTOTIC HEARD ANYONE CALK ABOUT THAT ACTUALLY HAPPENING AND THAT MIGHT HAVE AN EFFECT ON THE LEVEL OF BURDEN OR THE TENSION AND CONFLICT OR EVEN NEGATIVE--YOU KNOW HEALTH ISSUES THAT WE MIGHT SEE IN THE CAREGIVER. BUT I AGREE WITH YOU, IT'S SOMETHING WE HAVE TO UNDERSTAND. I WILL SAY WHEN WE APPROACH CAREGIVERS TO TALK TO THEM ABOUT, YOU KNOW ARE THEY THE PRIMARY CAREGIVER, DO THEY HAVE A SECONDARY ROLE, THINGS OF THAT SORT, THAT'S THE LANGUAGE THAT WE USE WHICH IS SORT OF SAYING, ARE YOU GOING TO BE DOING MORE OF THIS OR SOMEBODY ELSE HELPING YOU? RIGHT? BUT WE DON'T TALK ABOUT THE--THE CAREGIVER SPECIFICALLY, YOU KNOW IS THIS WHAT YOU WANT TO DO? AGAIN THIS GOES BACK TO THAT COMPETENT ADULT PATIENT WHO IS REALLY THE ONE WHO CHOOSES AND THEY MAY NOT HAVE A CHOICE. WE'VE HAD MANY, YOU KNOW SPOUSAL RELATIONSHIPS WHERE IT'S YOUR SPOUSE OR NO ONE. AND THEY COME FORWARD. WE'VE HAD SITUATIONS OF COURSE WITH PARENTS. WE'VE SEEN A LOT OF PARENTAL UNITS CARING FOR AN ADULT CHILD BECAUSE THEY MAY NOT BE MARRIED BECAUSE THAT'S PLAGUED THEM FOR YEARS. SO IT'S A VERY GOOD POINT. >> I WOULD ALSO SAY THAT I THINK WHEN WE ASK ABOUT WHO'S GOING TO BE THE PRIMARY CARE GIVER OR WHO THE CAREGIVERS ARE THAT WE OFTEN FIND OUT IF WE DIG FURTHER WHO THAT IS BUT IT'S NOT OUR ROUTINE ASSESSMENT OF HOW THEY CAME ABOUT TO BE THE CAREGIVER. >> ALLISON ROSS, I WORK FOR THE DEPARTMENT OF NURSING RESEARCH AND TRANSLATIONAL SCIENCE WITH MARGARET AND LESLIE. AND I HAD--I COULDN'T SIT THERE AND NOT SAY THIS, THAT I PARTICIPATED IN THE REVIEW OF THE LITERATURE WE DID LOOKING AT TRAJECTORY OF A LOT OF QUALITATIVE RESEARCH THAT'S BEEN DONE ON CARE GIVING AND IT DID COME OUT IN A NUMBER OF STUDIES THAT THERE'S PREALLOTY SUBSTANTIAL GROUP WESTBOUND THE CAREGIVERS WHO DIDN'T REALLY WANT TO TAKE THIS ON, BUT THERE'S NO CHOICE. AND SO YOU CAN IMAGINE FOR THOSE CAREGIVERS THERE IS A LOT OF EQUALITY AND ANGER AND IT'S NOT--GUILT AND HANGER AND THERE'S NOWHERE TO EXPRESS THAT AND SOME OF THEM DON'T SO THERE'S A LOT IN THE QUALITATIVE LITERATURE OF THIS SUBGROUP AND THE SIGMA THEY FEEL AND THE GUILT WHICH COMPOUNDS THOSE PROBLEMS WE WERE TALKING ABOUT. >> GREAT RESENTATION, THANK YOU SO MUCH, DELORES, AND CAREGIVER SPECIALIST, I THINK YOUR POINT IS WELL TAKEN. IN WORKING WITH PATIENTS I RECENTLY HAD A PATIENT WITH CANCER AND HE HAD RECEIVED THE NEOBLADDER AND IN OUR DISCUSSION HE WAS TRYING TO HINT AT INTIMACY WITH HIS WIFE WHEN HE WAS GOING OUT AND HOW DIFFICULT A SITUATION THAT WAS FOR HIM, AND IT'S SOMETHING IN HEALTHCARE THAT WE TEND TO SOMETIMES NOT WANT TO DISCUSS INDEPTH AND I ENDED UP HAVING TO DISCUSS IT INDEPTH WITH HIM BECAUSE IT WAS VERY IMPORTANT TO HIM AND HIS WIFE BECAUSE OF HIS COMPLICATIONS WOULD ALSO HAVE TO BECOME MORE OF A CAREGIVER AND THAT CERTAINLY ENTERED A LOT INTO THE DISCUSSION SO I WANTED TO THANK YOU FOR BRINGING THAT UP. THE SECOND POINT I WANTED TO MAKE IS WHEN YOU HAVE A CAREGIVER WHO HAS A HISTORY OF ADDICTION, I CAN'T STRESS THIS ENOUGH THE IMPORTANCE OF RECOGNIZING THAT THE ADDICTION IS A DISEASE AND THERE'S PREDICTIONS, TECHNIQUES AND INTERVENTIONS THAT CAN BE CONSIDERED. SO ANYONE WHO'S HAD AN ALCOHOL HISTORY, IT'S AT HIGH RISK FOR RETURNING TO ALCOHOL FOR A RESULT OF THE STRESSOR. AND AS A RESULT OF THAT, I LIKE TO THINK OF LIKE RETURNING TO AA BEFORE THE SURGERY, BEFORE THE INCIDENT. ALWAYS HAVING ACCESS TO AACASE OR IN THE ROOM TO DISCUSS EVERY DAY DEGARD WAG CAN YOU DO TO SUPPORT YOUR SOBRIETY AND I THINK IT'S VERY IMPORTANT TO RECOGNIZE THAT. SOMEONE WHO IS RECOVERING FROM ADDICTION MUST HAVE STRUCTURE DURING THEIR DAY. SO WHEN YOU ALTER THAT STRUCTURE, I ALWAYS ANTICIPATE THAT THERE'S HIGH RISK FOR RETURNING TO PAST BEHAVIORS. I THINK JOHN WAS DOING PROBABLY THE BEST HE COULD IN THE CIRCUMSTANCE BUT NEEDED MORE SUPPORT AND NEEDED INTERVENTIONS IN TERMS OF HIS ALCOHOLISM IN ORDER TO BE ABLE TO TAKE CARE OF THE PATIENT. THANK YOU AGAIN. >> AND I THINK THAT'S EXACTLY RIGHT AND THE QUESTION BACK TO NUCLEOTIDES THE AUDIENCE AND I DON'T FINISH THERE'S A RIGHT ANSWER BUT WHOSE RESPONSIBILITY IS IT TO MAKE SURE THAT JOHN IS GETTING THAT COUNSEL, NOT JUST MAYBE AT THE INITIAL ENCOULD YOU WANTER BUT TRACKING HIS ADHERENCE TO BEST PRACTICES FOR HIS RECOVERY AND MANAGEMENT. IS IT OURS? OR IS IT SOMEONE ELSE'S? >> I THINK IT'S IMPORTANT FOR JOHN TO TAKE ACCOUNTABILITY AND WE TALK ABOUT THAT IN THE 12 STEPS, ACCOUNTABILITY, RESPONSIBILITY OF BECOMING AN ADULT AND GETTING TO THE HIGHER POWER AND I THINK THAT'S ONE THING THAT'S IMPORTANT TO REMEMBER THAT MENTAL HEALTH OFFICIALS AREN'T ALWAYS ADDICTION SPECIALISTS THAT IT IS A SUBSPECIALTY AND THAT WE FORGET THAT SUBSPECIALTY DOES EXIST AND FOR SOMEONE LIKE JOHN THAT WOULD BE SOMETHING THAT WOULD BE VERY IMPORTANT. >> THANK YOU. >> THANK YOU SO MUCH. >> HI, MARY DANA, I WORK IN MENTAL HEALTH AND I'VE HAD THE PRIVILEGE OF BEING A LIAISON NURSE AND WORKING WITH FAMILIES AND PATIENTS. MY CAREER HERE AT THE NIH. I THINK THAT YOU BRATS UP A VERY COMPLEX SUBJECT AND THERE AREN'T VERY EASY ANSWERS AND YOU KNOW JUST A FEW EXPERIENCES THAT I HAVE HAD THAT HAVE BEEN I THINK HELPFUL AND THAT IS BRINGING FAMILIES TOGETHER AND HAD THE PRIVILEGE OF BEING ABLE TO DO THAT. AND HAVING THEM--THERE ARE A LOT OF BARRIE TO, YOU KNOW ALCOHOLISM AND ADDICTIONS IS JUST ONE OF THEM. SOMETIMES THEY'RE JUST FAMILY DYNAMICS THAT HAVE BEEN GOING ON FOR YEARS AND ALL OF A SUDDEN, A PERSON WHO'S FURIOUS WITH THEIR SPOUSE OR PARENT IS NOW RESPONSIBLE FOR CARING FOR THAT PERSON AND THAT GETS IN THE WAY AND SOMETIMES JUST IF YOU HAVE A MENTAL HEALTH EXPERT AROUND, YOU SAY SIT DOWN WITH THE FAMILY AND EXPLORE WHAT'S GOING ON. I THINK DOING AN ASSESSMENT OF THE CAREGIVER AND THEIR ROLE IN REAL EDUCATION AND ASSESSING WHETHER OR NOT THEY UNDERSTAND WHAT'S GOING ON AND WHAT THEIR ROLE IS, WE IN THE MEDICAL PROFESSION ASSUME AN AWFUL LOT ABOUT WHAT PEOPLE KNOW ABOUT MEDICINE. SOMETIMES PEOPLE CAN'T DON WE'RE GIVING DIRECTIONS TO PEOPLE AND THEY CAN'T READ ENGLISH. >> I THINK THOSE ARE GOOD POINTS AS WELL AND I KNOW DR. GOWAN'S GOING TO TAKE THE MIC AWAY IN A SECOND BUT I WANT TO ADD ONE MORE THING BASED ON WHAT YOU WERE SAYING, YOU USED THE WORD ASSESSING THEM AND WITH THAT I CHALLENGE US TO ALSO THINK ABOUT WHERE WE DOCUMENT THAT ASSESSMENT. BECAUSE IN THE CONTEXT OF THE CAREGIVER FOR A PATIENT WHO WE'RE CARING FOR, THE ASSESSMENT OF THE CAREGIVER GOING TO PATIENT MEDICAL RECORD WHICH COULD BE A BREECH OF CONFIDENTIALITY OR DO WE NEED TO INSURE THAT THEY ARE PERCEIVED AS AN INDIVIDUAL PATIENT IN WHICH CASE THEY HAVE THEIR OWN MEDICAL RECORD AND WE DOCUMENT THAT AND THAT CREATES A WHOLE OTHER DILEMMA WHEN WE GET OUT INTO THE COMMUNITY WITH REIMBURSEMENT ISSUES AND FEE FOR SERVICE. SO DOCUMENTS ANYTHING WE OBTAIN FOR CAREGIVERS IN OUR ELECTRONIC MEDICAL RECORD SYSTEM QUITE A CHALLENGE. >> OKAY, SO LET'S GIVE A SALUTE TO BOTH OF OUR PRESENTERS WHO DID A GREAT JOB. ANY TO ALL OF OUR NURSES