THE END OF LIFE: ETHICS, ECONOMICS AND LAW

RANDALL F. MOORE, M.D., J.D.SCOTT AND WHITETEXAS A & M COLLEGE OF MEDICINE

OUTLINE

FRAMING THE ISSUESTHE PATIENT SELF-DETERMINATION ACTTHE TEXAS ADVANCE DIRECTIVES ACTPROBLEMS APPLYING THE LAWASSESSING CAPACITY TO MAKE MEDICAL

DECISIONSCOURT CASES AND “FUTILE” CARETHEMES FOR REFLECTION

FRAMING THE ISSUES

HISTORICAL FACTORSDEMOGRAPHIC FACTORSECONOMIC FACTORS

HISTORICAL FACTORS

SINCE 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

TECHNOLOGICAL 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

INCREASING NUMBERS OF ELDERLY PEOPLE, MANY WITH DEMENTIA

20 TO 50% OF PERSONS OVER THE AGE OF 80 HAVE SOME DEGREEE OF DEMENTIA

THESE NUMBERS WILL INCREASE EVEN BEFORE THE BABY BOOMERS GROW OLD

ECONOMIC FACTORS

MEDICAL CARE NOW CONSUMES 14% OF THE GROSS DOMESTIC PRODUCT

30% OF MEDICARE DOLLARS ARE SPENT ON PATIENTS IN THE LAST YEAR OF LIFE

15% OF MEDICARE DOLLARS ARE SPENT ON PATIENTS IN THE LAST 6 MONTHS OF LIFE

ECONOMIC FACTORS

BY 2008 MEDICAL SPENDING IS LIKELY TO REACH 2.2 TRILLION DOLLARS AND OVER 16% OF THE GROSS DOMESTIC PRODUCT

IF UNCHECKED, MEDICAL SPENDING COULD CONSUME 30% OF THE GROSS DOMESTIC PRODUCT BY 2030

ECONOMIC FACTORS

MEDICAL INFLATION HAS BEEN PROMOTED PRIMARILY BY NEW TECHNOLOGY

OTHER 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

THE AMOUNT OF MONEY SPENT ON MEDICAL CARE IS NOT THE ISSUE

THE ISSUE IS THAT MANY TECHNOLOGIES ARE IN MANY CASES APPLIED SUCH THAT EACH DOLLAR SPENT DOES NOT PRODUCE A DOLLAR OF BENEFIT

ECONOMIC FACTORS

MANY NEW TECHNOLOGIES WILL BE VERY EXPENSIVE AND WILL FOCUSED ON A SMALL NUMBER OF PEOPLE

THIS WILL WORSEN THE PROBLEM OF COSTS EXCEEDING BENEFITS

EVENTUALLY, CONTROLLING MEDICAL INFLATION WILL REQUIRE RATIONING BENEFICIAL SERVICES FOR WHICH BENEFITS DO NOT EQUAL COSTS

THE PATIENT SELF-DETERMINATION ACT

FEDERAL LAWTOOK EFFECT IN 1991EMPHASIZES EDUCATION OF

PATIENTS AND THE GENERAL PUBLICDOES 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

THE PROVIDER MAY NOT CONDITION CARE ON THE EXISTENCE OR NON-EXISTENCE OF AN ADVANCE DIRECTIVE

THE 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

A COMPETENT ADULT MAY SET LIMITS ON HER OWN MEDICAL CARE BY:

DIRECTLY EXPRESSING A CHOICE TO LIMIT CARE PREPARING A DIRECTIVE TO PHYSICIANS APPOINTING A PROXY TO MAKE DECISIONS FOR

THE PATIENT

DIRECTIVE TO PHYSICIANS

THE DIRECTIVE TO PHYSICIANS SPECIFIES THE CARE THE PATIENT WOULD WANT UNDER VARIOUS CIRCUMSTANCES SHOULD THE PATIENT BECOME INCOMPETENT TO MAKE DECISIONS FOR HERSELF

OTHER STATES USUALLY CALL THIS A “LIVING WILL”

DIRECTIVE TO PHYSICIANS

AN ORAL OR NON-VERBAL DIRECTIVE MUST BE CONFIRMED BY TWO WITNESSES AND MUST BE ISSUED IN THE PRESENCE OF THE ATTENDING PHYSICIAN

A WRITTEN DIRECTIVE MUST BE SIGNED BY TWO WITNESSES

DIRECTIVE TO PHYSICIANS

THE PATIENT IS OBLIGATED TO TELL THE ATTENDING PHYSICIAN ABOUT A WRITTEN DIRECTIVE

THE PHYSICIAN IS REQUIRED TO MAKE THE DIRECTIVE PART OF THE MEDICAL CHART

A PATIENT MAY REVOKE A DIRECTIVE BY DESTROYING IT OR WRITING DOWN HER INTENT TO REVOKE IT

MEDICAL POWER OF ATTORNEY

A PATIENT MAY COMPLETE A “MEDICAL POWER OF ATTORNEY,” WHICH APPOINTS A PROXY TO MAKE DECISIONS IF THE PATIENT BECOMES INCOMPETENT

MOST STATES CALL A MEDICAL POWER OF ATTORNEY A “DURABLE POWER OF ATTORNEY FOR HEALTH CARE”

MEDICAL POWER OF ATTORNEY

THE PROXY IS OBLIGATED TO MAKE DECISIONS ACCORDING TO THE PROXY’S KNOWLEDGE OF THE PATIENT’S WISHES

IF 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

A PHYSICIAN IS OBLIGATED TO EITHER COMPLY WITH AN ADVANCE DIRECTIVE OR TO HELP THE PATIENT FIND A PHYSICIAN WHO WILL COMPLY

IF A PHYSICIAN FEELS A REQUEST FOR TREATMENT IS INAPPROPRIATE, THE MATTER IS REFERRED TO THE ETHICS COMMITTEE

ETHICS COMMITTEE

THE PHYSICIAN MUST PROVIDE CARE UNTIL THE ETHICS COMMITTEE MEETS

THE COMMITTEE MUST MEET WITHIN 48 HOURS

THE COMMITTEE MUST RENDER A WRITTEN DECISION THAT IS MADE A PART OF THE MEDICAL RECORD

ETHICS COMMITEE

IF THE COMMITTEE AGREES WITH THE PHYSICIAN, THE PATIENT OR PROXY MAY REQUEST TRANSFER TO A DIFFERENT PHYSICIAN

THE PHYSICIAN MUST PROVIDE LIFE-SUSTAINING TREATMENT FOR 10 DAYS TO ALLOW TRANSFER

A 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

FEW PEOPLE PREPARE DIRECTIVES TO PHYSICIANS OR APPOINT A PROXY

BUREAUCRATIC BARRIERSMANY PATIENTS WANT HIGH-

TECHNOLOGY CAREPHYSICIANS OFTEN FAIL TO DISCUSS

END-OF-LIFE ISSUES WITH PATIENTS

PROBLEMS APPLYING THE PSDA AND TEXAS LAW

EDUCATION AND ENCOURAGEMENT DO LITTLE TO ENHANCE COMPLETION OF ADVANCE DIRECTIVES

DIRECTIVES TO PHYSICIANS ARE OFTEN NOT FOLLOWED

PATIENT PREFERENCES ARE UNCERTAIN AND CHANGE OVER TIME

PROBLEMS APPLYING THE PSDA AND TEXAS LAW

ADVANCE DIRECTIVES SOMETIMES COMPLICATE DECISION MAKING

PROXIES AND PHYSICIANS MAY MAKE POOR SUBSTITUTED JUDGMENTS

FEW PEOPLE PREPARE ADVANCE DIRECTIVES OR APPOINT A PROXY

STUDIES SUGGEST THAT ONLY 9 TO 18% OF THE GENERAL POPULATION HAS PREPARED AN ADVANCE DIRECTIVE

ELDERLY PATIENTS ARE EVEN LESS LIKELY TO HAVE PREPARED AN ADVANCE DIRECTIVE

STUDIES SUGGEST THAT ONLY 5 TO 10% OF ELDERLY PEOPLE DISCUSS WITH THEIR DOCTOR END-OF-LIFE CARE

BUREAUCRATIC BARRIERS

PATIENTS OFTEN RECEIVE INFORMATION ABOUT ADVANCE DIRECTIVES UPON HOSPITAL ADMISSION

AT ADMISSION PEOPLE ARE BURDENED BY SICKNESS AND A REQUIREMENT TO COMPLETE MANY OTHER FORMS

STRESS AND INFORMATION OVERLOAD IMPAIR DECISION-MAKING CAPACITY

MANY PATIENTS WANT HIGH-TECHNOLOGY CARE

IN ONE STUDY 89% OF CHRONICALLY ILL ELDERLY PEOPLE SAID THEY WOULD WANT CPR

67% WANTED CPR EVEN IF SO DEMENTED THEY COULD NOT RECOGNIZE FAMILY OR FRIENDS

IN 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

MANY PEOPLE MAY FEEL LIKE COMPLETING AN ADVANCE DIRECTIVE IS LIKE “GIVING UP”

MANY PATIENTS MAY FEAR THEY WILL BE UNABLE TO CHANGE THEIR MINDS AFTER COMPLETING AN ADVANCE DIRECTIVE TO LIMIT CARE

MANY 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

STUDIES 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

MANY PATIENTS NOTE SIMPLE PROCRASTINATION AS THE REASON FOR FAILING TO COMPLETE A DIRECTIVE

DIRECTIVES TO PHYSICIANS ARE OFTEN NOT FOLLOWED

DIRECTIVES TO PHYSICIANS ON FILE IN NURSING HOMES OFTEN NEVER MAKE IT TO THE HOSPITAL WHEN PATIENTS ARE HOSPITALIZED

EVEN WHEN DIRECTIVES MAKE IT TO THE HOSPITAL, THE DIRECTIVES ARE OFTEN SIMPLY NOT FOLLOWED

PATIENT PREFERENCES ARE UNCERTAIN AND CHANGE OVER TIME

STUDIES SHOW THAT PATIENTS’ PREFERENCES ABOUT END-OF-LIFE CARE OFTEN CHANGE OVER A SIX MONTH PERIOD

AFTER COMPLETING AN ADVANCE DIRECTIVE, MANY PATIENTS THEN STATE THEY DO NOT WANT THE DIRECTIVES STRICTLY FOLLOWED

ADVANCE DIRECTIVES SOMETIMES COMPLICATE DECISION-MAKING

SOME ADVANCE DIRECTIVES PROVIDE A LONG CHECKLIST OF INTERVENTIONS THAT PATIENTS MAY ACCEPT OR DECLINE

THESE CHECKLIST DIRECTIVES EMPHASIZE THE MEANS AND LOSE SIGHT OF THE OVERALL GOALS

CHECKLIST DIRECTIVES MAY LEAD TO ILLOGICAL COMBINATIONS OF PREFERENCES

PROXIES AND PHYSICIANS MAY MAKE POOR SUBSTITUTED JUDGMENTS

SOME STUDIES HAVE FOUND THAT FAMILY MEMBERS DO LITTLE BETTER THAN CHANCE IN PREDICTING WHAT A PATIENT WOULD WANT

STUDIES 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

PHYSICIANS TEND TO SERIOUSLY UNDERESTIMATE PATIENTS’ PREFERENCES FOR CARE

PHYSICIANS 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

CAPACITY IS THE ABILITY TO DO A TASKCAPACITY IS TASK-SPECIFICA PERSON MAY POSSESS CAPACITY TO

MAKE ONE MEDICAL DECISION, BUT LACK CAPACITY TO MAKE A DIFFERENT DECISION

LEGAL DEFINITIONS OF CAPACITY VARY FROM JURISDICTION TO JURISDICTION

A METHOD TO ASSESS CAPACITY

ATTENTIONLANGUAGEMEMORYABSTRACT THINKINGAWARENESS AND JUDGMENT

STANDARDS OF JUDGMENT

MAKE ANY DECISION AT ALLAGREE WITH THE DOCTORMAKE A “RATIONAL” CHOICEMAKE A “RATIONAL” CHOICE FOR

“RATIONAL” REASONSMAKE A CHOICE NOT UNDULY

INFLUENCED BY A MENTAL DISORDER

COURT CASES AND “FUTILE” CARE

IN SOME CASES PROVIDERS HAVE ASKED COURTS TO LIMIT CARE THE PROVIDERS DEEMED “FUTILE”

FUTILE MEANS INEFFECTIVE IN ACHIEVING A PARTICULAR GOAL

IN 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

COURTS HAVE TYPICALLY HELD THAT PATIENTS AND FAMILY MEMBERS, NOT CARE PROVIDERS, SHOULD DETERMINE THE GOALS OF TREATMENT

COURTS 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

AT THE END OF LIFE, WHO SHOULD DECIDE WHAT THE GOALS ARE?

HOW CAN WE ENCOURAGE PEOPLE TO LIMIT CARE THAT IS UNLIKELY TO PRODUCE BENEFITS THAT EQUAL COSTS?

HOW DOES SOCIETY OTHERWISE SET LIMITS ON CARE FOR WHICH COSTS EXCEED BENEFITS?

THE END

1. Proceed to the post test2. Download the post test3. Complete the post test4. Return the post test to Dr. Sandra

Oliver

Post test question 1

What percentage of persons over the age of 80 have some degree of dementia?

1. 10-20%2. 15-30%3. 20-50%4. 25-75%

Post test question 2

The 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 CARE2. GRANTING A PROXY IRREVOCABLE POWER OF

ATTORNEY 3. PREPARING A DIRECTIVE TO PHYSICIANS4. APPOINTING A PROXY TO MAKE DECISIONS FOR HIM/HERSELF

Post test question 3

Texas 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.