THE END OF LIFE: ETHICS, ECONOMICS AND LAW RANDALL F. MOORE, M.D., J.D. SCOTT AND WHITE TEXAS A & M COLLEGE OF MEDICINE

OUTLINE zFRAMING THE ISSUES zTHE PATIENT SELF-DETERMINATION ACT zTHE TEXAS ADVANCE DIRECTIVES ACT zPROBLEMS APPLYING THE LAW zASSESSING CAPACITY TO MAKE MEDICAL DECISIONS zCOURT CASES AND “FUTILE” CARE zTHEMES FOR REFLECTION

FRAMING THE ISSUES zHISTORICAL FACTORS zDEMOGRAPHIC FACTORS zECONOMIC FACTORS

HISTORICAL FACTORS zSINCE THE 1970s PEOPLE IN THE WESTERN WORLD HAVE BECOME INCREASINGLY CONCERNED ABOUT ETHICAL, ECONOMIC AND LEGAL ISSUES SURROUNDING DYING, DEATH AND MEDICAL CARE NEAR THE END OF LIFE zTECHNOLOGICAL PROGRESS HAS MADE IT POSSIBLE TO PROLONG THE LIVES OF PEOPLE WHO HAVE LITTLE CHANCE OF ATTAINING OR RETURNING TO STATES OF HEALTH, HAPPINESS AND PRODUCTIVITY

DEMOGRAPHIC FACTORS zINCREASING NUMBERS OF ELDERLY PEOPLE, MANY WITH DEMENTIA z20 TO 50% OF PERSONS OVER THE AGE OF 80 HAVE SOME DEGREEE OF DEMENTIA zTHESE NUMBERS WILL INCREASE EVEN BEFORE THE BABY BOOMERS GROW OLD

ECONOMIC FACTORS zMEDICAL CARE NOW CONSUMES 14% OF THE GROSS DOMESTIC PRODUCT z30% OF MEDICARE DOLLARS ARE SPENT ON PATIENTS IN THE LAST YEAR OF LIFE z15% OF MEDICARE DOLLARS ARE SPENT ON PATIENTS IN THE LAST 6 MONTHS OF LIFE

ECONOMIC FACTORS zBY 2008 MEDICAL SPENDING IS LIKELY TO REACH 2.2 TRILLION DOLLARS AND OVER 16% OF THE GROSS DOMESTIC PRODUCT zIF UNCHECKED, MEDICAL SPENDING COULD CONSUME 30% OF THE GROSS DOMESTIC PRODUCT BY 2030

ECONOMIC FACTORS zMEDICAL INFLATION HAS BEEN PROMOTED PRIMARILY BY NEW TECHNOLOGY zOTHER FACTORS SUCH AS AN AGING POPULATION, CARE OF THE TERMINALLY ILL, ADMINISTRATIVE INEFFICIENCIES AND DEFENSIVE MEDICINE, HAVE BEEN LESS IMPORTANT IN FUELING MEDICAL INFLATION

ECONOMIC FACTORS zTHE AMOUNT OF MONEY SPENT ON MEDICAL CARE IS NOT THE ISSUE zTHE ISSUE IS THAT MANY TECHNOLOGIES ARE IN MANY CASES APPLIED SUCH THAT EACH DOLLAR SPENT DOES NOT PRODUCE A DOLLAR OF BENEFIT

ECONOMIC FACTORS zMANY NEW TECHNOLOGIES WILL BE VERY EXPENSIVE AND WILL FOCUSED ON A SMALL NUMBER OF PEOPLE zTHIS WILL WORSEN THE PROBLEM OF COSTS EXCEEDING BENEFITS zEVENTUALLY, CONTROLLING MEDICAL INFLATION WILL REQUIRE RATIONING BENEFICIAL SERVICES FOR WHICH BENEFITS DO NOT EQUAL COSTS

THE PATIENT SELF- DETERMINATION ACT zFEDERAL LAW zTOOK EFFECT IN 1991 zEMPHASIZES EDUCATION OF PATIENTS AND THE GENERAL PUBLIC zDOES NOT REQUIRE THE STATES TO GRANT ANY SPECIFIC RIGHTS

THE PATIENT SELF- DETERMINATION ACT WHEN A PATIENT IS ADMITTED TO A HOSPITAL OR ENROLLED IN A HEALTH PLAN, THE PSDA REQUIRES THE PROVIDER TO GIVE TO THE PATIENT INFORMATION DESCRIBING THE PATIENT’S RIGHTS UNDER STATE LAW TO ACCEPT OR REFUSE MEDICAL TREATMENT AND TO FORMULATE AN ADVANCE DIRECTIVE

THE PATIENT SELF- DETERMINATION ACT zTHE PROVIDER MAY NOT CONDITION CARE ON THE EXISTENCE OR NON- EXISTENCE OF AN ADVANCE DIRECTIVE zTHE PSDA DOES NOT NEGATE STATE LAWS THAT ALLOW PROVIDERS TO REFUSE TO IMPLEMENT ADVANCE DIRECTIVE PROVISIONS THAT VIOLATE THE MORAL CONSCIENCE OF THE PROVIDER

THE TEXAS ADVANCE DIRECTIVES ACT zA COMPETENT ADULT MAY SET LIMITS ON HER OWN MEDICAL CARE BY: zDIRECTLY EXPRESSING A CHOICE TO LIMIT CARE zPREPARING A DIRECTIVE TO PHYSICIANS zAPPOINTING A PROXY TO MAKE DECISIONS FOR THE PATIENT

DIRECTIVE TO PHYSICIANS zTHE DIRECTIVE TO PHYSICIANS SPECIFIES THE CARE THE PATIENT WOULD WANT UNDER VARIOUS CIRCUMSTANCES SHOULD THE PATIENT BECOME INCOMPETENT TO MAKE DECISIONS FOR HERSELF zOTHER STATES USUALLY CALL THIS A “LIVING WILL”

DIRECTIVE TO PHYSICIANS zAN ORAL OR NON-VERBAL DIRECTIVE MUST BE CONFIRMED BY TWO WITNESSES AND MUST BE ISSUED IN THE PRESENCE OF THE ATTENDING PHYSICIAN zA WRITTEN DIRECTIVE MUST BE SIGNED BY TWO WITNESSES

DIRECTIVE TO PHYSICIANS zTHE PATIENT IS OBLIGATED TO TELL THE ATTENDING PHYSICIAN ABOUT A WRITTEN DIRECTIVE zTHE PHYSICIAN IS REQUIRED TO MAKE THE DIRECTIVE PART OF THE MEDICAL CHART zA PATIENT MAY REVOKE A DIRECTIVE BY DESTROYING IT OR WRITING DOWN HER INTENT TO REVOKE IT

MEDICAL POWER OF ATTORNEY zA PATIENT MAY COMPLETE A “MEDICAL POWER OF ATTORNEY,” WHICH APPOINTS A PROXY TO MAKE DECISIONS IF THE PATIENT BECOMES INCOMPETENT zMOST STATES CALL A MEDICAL POWER OF ATTORNEY A “DURABLE POWER OF ATTORNEY FOR HEALTH CARE”

MEDICAL POWER OF ATTORNEY zTHE PROXY IS OBLIGATED TO MAKE DECISIONS ACCORDING TO THE PROXY’S KNOWLEDGE OF THE PATIENT’S WISHES zIF THE PROXY DOES NOT KNOW THE PATIENT’S WISHES, THE PROXY DECIDES ACCORDING TO THE BEST INTERESTS OF THE PATIENT

TERMINAL AND IRREVERSIBLE CONDITIONS DIRECTIVES TO PHYSICIANS AND MEDICAL POWERS OF ATTORNEY BECOME EFFECTIVE IF THE PATIENT IS UNABLE TO MAKE DECISIONS FOR HERSELF AND IF SHE DEVELOPS A TERMINAL OR IRREVERSIBLE CONDITION

TERMINAL CONDITIONS A TERMINAL CONDITION IS AN INCURABLE CONDITION THAT WITHIN REASONABLE MEDICAL JUDGMENT IS LIKELY TO LEAD TO DEATH WITHIN 6 MONTHS EVEN WITH LIFE- SUSTAINING TREATMENT

IRREVERSIBLE CONDITIONS AN IRREVERSIBLE CONDITION IS A CONDITION THAT CAN BE TREATED BUT NEVER CURED, THAT LEAVES THE PERSON UNABLE TO CARE FOR HERSELF AND THAT WITHOUT LIFE-SUSTAINING TREATMENT IS FATAL

WITHDRAWAL OF TREATMENT LIFE-SUSTAINING TREATMENTS THAT MAY BE WITHHELD OR WITHDRAWN INCLUDE ARTIFICAL NUTRITION AND HYDRATION, BUT DO NOT INCLUDE OTHER THERAPIES DESIGNED TO ENSURE COMFORT

FOLLOWING ADVANCE DIRECTIVES zA PHYSICIAN IS OBLIGATED TO EITHER COMPLY WITH AN ADVANCE DIRECTIVE OR TO HELP THE PATIENT FIND A PHYSICIAN WHO WILL COMPLY zIF A PHYSICIAN FEELS A REQUEST FOR TREATMENT IS INAPPROPRIATE, THE MATTER IS REFERRED TO THE ETHICS COMMITTEE

ETHICS COMMITTEE zTHE PHYSICIAN MUST PROVIDE CARE UNTIL THE ETHICS COMMITTEE MEETS zTHE COMMITTEE MUST MEET WITHIN 48 HOURS zTHE COMMITTEE MUST RENDER A WRITTEN DECISION THAT IS MADE A PART OF THE MEDICAL RECORD

ETHICS COMMITEE zIF THE COMMITTEE AGREES WITH THE PHYSICIAN, THE PATIENT OR PROXY MAY REQUEST TRANSFER TO A DIFFERENT PHYSICIAN zTHE PHYSICIAN MUST PROVIDE LIFE- SUSTAINING TREATMENT FOR 10 DAYS TO ALLOW TRANSFER zA COURT ORDER IS REQUIRED TO EXTEND TREATMENT BEYOND 10 DAYS

ETHICS COMMITTEE IF THE COMMITTEE AGREES WITH THE PATIENT OR PROXY THAT FURTHER LIFE- SUSTAINING TREATMENT IS APPROPRIATE, THE PHYSICIAN MUST CONTINUE TO PROVIDE CARE AND MUST MAKE A DILIGENT EFFORT TO TRANSFER THE PATIENT TO ANOTHER PHYSICIAN

ALLOCATION OF RESOURCES TEXAS LAW DOES NOT REQUIRE PROVISION OF LIFE-SUSTAINING TREATMENT TO A PATIENT IF DOING SO WOULD DENY THE SAME TREATMENT TO ANOTHER PATIENT

PROTECTION FROM LIABILITY WHEN A PROVIDER USES REASONABLE CARE IN APPLYING A DIRECTIVE’S OR A PROXY’S INSTRUCTIONS TO LIMIT CARE, THE PROVIDER IS PROTECTED FROM CIVIL AND CRIMINAL LIABILITY

ACTIVE EUTHANASIA TEXAS LAW DOES NOT CONDONE ACTIVE EUTHANASIA

PROBLEMS APPLYING THE PSDA AND TEXAS LAW zFEW PEOPLE PREPARE DIRECTIVES TO PHYSICIANS OR APPOINT A PROXY zBUREAUCRATIC BARRIERS zMANY PATIENTS WANT HIGH- TECHNOLOGY CARE zPHYSICIANS OFTEN FAIL TO DISCUSS END-OF-LIFE ISSUES WITH PATIENTS

PROBLEMS APPLYING THE PSDA AND TEXAS LAW zEDUCATION AND ENCOURAGEMENT DO LITTLE TO ENHANCE COMPLETION OF ADVANCE DIRECTIVES zDIRECTIVES TO PHYSICIANS ARE OFTEN NOT FOLLOWED zPATIENT PREFERENCES ARE UNCERTAIN AND CHANGE OVER TIME

PROBLEMS APPLYING THE PSDA AND TEXAS LAW zADVANCE DIRECTIVES SOMETIMES COMPLICATE DECISION MAKING zPROXIES AND PHYSICIANS MAY MAKE POOR SUBSTITUTED JUDGMENTS

FEW PEOPLE PREPARE ADVANCE DIRECTIVES OR APPOINT A PROXY zSTUDIES SUGGEST THAT ONLY 9 TO 18% OF THE GENERAL POPULATION HAS PREPARED AN ADVANCE DIRECTIVE zELDERLY PATIENTS ARE EVEN LESS LIKELY TO HAVE PREPARED AN ADVANCE DIRECTIVE zSTUDIES SUGGEST THAT ONLY 5 TO 10% OF ELDERLY PEOPLE DISCUSS WITH THEIR DOCTOR END-OF-LIFE CARE

BUREAUCRATIC BARRIERS zPATIENTS OFTEN RECEIVE INFORMATION ABOUT ADVANCE DIRECTIVES UPON HOSPITAL ADMISSION zAT ADMISSION PEOPLE ARE BURDENED BY SICKNESS AND A REQUIREMENT TO COMPLETE MANY OTHER FORMS zSTRESS AND INFORMATION OVERLOAD IMPAIR DECISION-MAKING CAPACITY

MANY PATIENTS WANT HIGH-TECHNOLOGY CARE zIN ONE STUDY 89% OF CHRONICALLY ILL ELDERLY PEOPLE SAID THEY WOULD WANT CPR z67% WANTED CPR EVEN IF SO DEMENTED THEY COULD NOT RECOGNIZE FAMILY OR FRIENDS zIN ANOTHER STUDY 88% OF ELDERLY ICU GRADUATES SAID THEY WOULD WANT ICU CARE AGAIN JUST TO EXTEND LIFE BY ONE MONTH

MANY PATIENTS WANT HIGH-TECHNOLOGY CARE zMANY PEOPLE MAY FEEL LIKE COMPLETING AN ADVANCE DIRECTIVE IS LIKE “GIVING UP” zMANY PATIENTS MAY FEAR THEY WILL BE UNABLE TO CHANGE THEIR MINDS AFTER COMPLETING AN ADVANCE DIRECTIVE TO LIMIT CARE zMANY PATIENTS MAY FEAR COMPLETING A LEGAL DOCUMENT WITHOUT CONSULTING AN ATTORNEY

PHYSICIANS OFTEN FAIL TO DISCUSS END-OF-LIFE ISSUES A FEW STUDIES HAVE CONSISTENTLY FOUND THAT ONLY ABOUT 10 TO 20% OF PHYSICIANS DISCUSS END-OF-LIFE ISSUES WITH ELDERLY, EVEN TERMINALLY ILL, PATIENTS

EDUCATION AND ENCOURAGEMENT DO LITTLE TO ENHANCE COMPLETION OF ADVANCE DIRECTIVES zSTUDIES WITH DIALYSIS AND NURSING HOME PATIENTS HAVE FOUND THAT EVEN FAIRLY EXTENSIVE EDUCATION CONVINCES ONLY ABOUT 15 TO 25% OF THE PATIENTS TO COMPLETE AN ADVANCE DIRECTIVE zMANY PATIENTS NOTE SIMPLE PROCRASTINATION AS THE REASON FOR FAILING TO COMPLETE A DIRECTIVE

DIRECTIVES TO PHYSICIANS ARE OFTEN NOT FOLLOWED zDIRECTIVES TO PHYSICIANS ON FILE IN NURSING HOMES OFTEN NEVER MAKE IT TO THE HOSPITAL WHEN PATIENTS ARE HOSPITALIZED zEVEN WHEN DIRECTIVES MAKE IT TO THE HOSPITAL, THE DIRECTIVES ARE OFTEN SIMPLY NOT FOLLOWED

PATIENT PREFERENCES ARE UNCERTAIN AND CHANGE OVER TIME zSTUDIES SHOW THAT PATIENTS’ PREFERENCES ABOUT END-OF-LIFE CARE OFTEN CHANGE OVER A SIX MONTH PERIOD zAFTER COMPLETING AN ADVANCE DIRECTIVE, MANY PATIENTS THEN STATE THEY DO NOT WANT THE DIRECTIVES STRICTLY FOLLOWED

ADVANCE DIRECTIVES SOMETIMES COMPLICATE DECISION-MAKING zSOME ADVANCE DIRECTIVES PROVIDE A LONG CHECKLIST OF INTERVENTIONS THAT PATIENTS MAY ACCEPT OR DECLINE zTHESE CHECKLIST DIRECTIVES EMPHASIZE THE MEANS AND LOSE SIGHT OF THE OVERALL GOALS zCHECKLIST DIRECTIVES MAY LEAD TO ILLOGICAL COMBINATIONS OF PREFERENCES

PROXIES AND PHYSICIANS MAY MAKE POOR SUBSTITUTED JUDGMENTS zSOME STUDIES HAVE FOUND THAT FAMILY MEMBERS DO LITTLE BETTER THAN CHANCE IN PREDICTING WHAT A PATIENT WOULD WANT zSTUDIES SUGGEST THAT PHYSICIANS DO WORSE THAN NURSES AND SOCIAL WORKERS AND WORSE THAN CHANCE AT PREDICTING PATIENTS’ PREFERENCES

PROXIES AND PHYSICIANS MAY MAKE POOR SUBSTITUTED JUDGMENTS zPHYSICIANS TEND TO SERIOUSLY UNDERESTIMATE PATIENTS’ PREFERENCES FOR CARE zPHYSICIANS WHO HAVE DISCUSSED END-OF-LIFE CARE WITH PATIENTS TEND TO MAKE WORSE PREDICTIONS THAN PHYSICIANS WHO HAVE NOT HAD SUCH DISCUSSIONS

PROBLEMS APPLYING THE LAW OVERALL, THE EMPIRICAL EVIDENCE PROVIDES LITTLE SUPPORT FOR THE THEORY OF ADVANCE DIRECTIVES

ASSESSING CAPACITY TO MAKE MEDICAL DECSIONS zCAPACITY IS THE ABILITY TO DO A TASK zCAPACITY IS TASK-SPECIFIC zA PERSON MAY POSSESS CAPACITY TO MAKE ONE MEDICAL DECISION, BUT LACK CAPACITY TO MAKE A DIFFERENT DECISION zLEGAL DEFINITIONS OF CAPACITY VARY FROM JURISDICTION TO JURISDICTION

A METHOD TO ASSESS CAPACITY zATTENTION zLANGUAGE zMEMORY zABSTRACT THINKING zAWARENESS AND JUDGMENT

STANDARDS OF JUDGMENT zMAKE ANY DECISION AT ALL zAGREE WITH THE DOCTOR zMAKE A “RATIONAL” CHOICE zMAKE A “RATIONAL” CHOICE FOR “RATIONAL” REASONS zMAKE A CHOICE NOT UNDULY INFLUENCED BY A MENTAL DISORDER

COURT CASES AND “FUTILE” CARE zIN SOME CASES PROVIDERS HAVE ASKED COURTS TO LIMIT CARE THE PROVIDERS DEEMED “FUTILE” zFUTILE MEANS INEFFECTIVE IN ACHIEVING A PARTICULAR GOAL zIN THESE CASES THE REAL DISAGREEMENTS WERE NOT ABOUT WHETHER CARE WOULD ACHIEVE CERTAIN GOALS, BUT ABOUT WHETHER THE GOALS WERE APPROPRIATE

COURT CASES AND “FUTILE” CARE zCOURTS HAVE TYPICALLY HELD THAT PATIENTS AND FAMILY MEMBERS, NOT CARE PROVIDERS, SHOULD DETERMINE THE GOALS OF TREATMENT zCOURTS HAVE HELD THAT PROVIDERS MAY DECIDE IF AN INTERVENTION IS LIKELY TO ACHIEVE THE GOALS SELECTED BY THE PATIENTS AND FAMILY MEMBERS

THEMES FOR REFLECTION zAT THE END OF LIFE, WHO SHOULD DECIDE WHAT THE GOALS ARE? zHOW CAN WE ENCOURAGE PEOPLE TO LIMIT CARE THAT IS UNLIKELY TO PRODUCE BENEFITS THAT EQUAL COSTS? zHOW DOES SOCIETY OTHERWISE SET LIMITS ON CARE FOR WHICH COSTS EXCEED BENEFITS?

THE END 1.Proceed to the post test 2.Download the post test 3.Complete the post test 4.Return the post test to Dr. Sandra Oliver

Post test question 1 zWhat percentage of persons over the age of 80 have some degree of dementia? % % % %

Post test question 2 zThe Texas Advance Directives Acts states that a competent adult may set limits on his own medical care in all of the following EXCEPT: 1. DIRECTLY EXPRESSING A CHOICE TO LIMIT CARE 2. GRANTING A PROXY IRREVOCABLE POWER OF ATTORNEY 3. PREPARING A DIRECTIVE TO PHYSICIANS 4. APPOINTING A PROXY TO MAKE DECISIONS FOR HIM/HERSELF

Post test question 3 zTexas law does not condone active euthanasia. ____True ____False

Post test question 4 Which of the following is FALSE regarding end of life care? 1.Family members do little better than chance in predicting patient preferences 2.Physicians do much better than chance in predicting what a patient would 3.Nurses and social workers do better than physicians in predicting patients’ preferences. 4.Patients’ preferences often change over a six month period.