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THE PATIENT SELF- THE PATIENT SELF- DETERMINATION ACT DETERMINATION ACT VIRGINIA HEALTH CARE VIRGINIA HEALTH CARE DECISIONS ACT DECISIONS ACT HAD 611 HAD 611 Karen N. Swisher, MS, JD Karen N. Swisher, MS, JD

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THE PATIENT SELF-THE PATIENT SELF-DETERMINATION ACTDETERMINATION ACT

VIRGINIA HEALTH CARE VIRGINIA HEALTH CARE DECISIONS ACTDECISIONS ACT

HAD 611HAD 611

Karen N. Swisher, MS, JDKaren N. Swisher, MS, JD

MEDICAL SCIENCE IS MY SHEPHERD; I SHALL NOT WANT . IT MEDICAL SCIENCE IS MY SHEPHERD; I SHALL NOT WANT . IT MAKETH ME TO LIE DOWN IN HOSPITAL BEDS; IT LEADETH MAKETH ME TO LIE DOWN IN HOSPITAL BEDS; IT LEADETH ME BESIDE THE MARVELS OF TECHNOLOGY; IT ME BESIDE THE MARVELS OF TECHNOLOGY; IT RESTORETH MY BRAIN WAVES; IT MAINTAINS ME IN A RESTORETH MY BRAIN WAVES; IT MAINTAINS ME IN A PERSISTENT VEGETATIVE STATE FOR IT’S NAME SAKE. PERSISTENT VEGETATIVE STATE FOR IT’S NAME SAKE. YEAH, THOUGH I WALK THROUGH THE VALLEY OF THE YEAH, THOUGH I WALK THROUGH THE VALLEY OF THE SHADOW OF DEATH, I WILL FIND NO END TO LIFE; FOR SHADOW OF DEATH, I WILL FIND NO END TO LIFE; FOR THOU ART WITH ME; THY RESPIRATOR AND HEART THOU ART WITH ME; THY RESPIRATOR AND HEART MACHINE THEY SUSTAIN ME. THOU PREPAREST MACHINE THEY SUSTAIN ME. THOU PREPAREST INTRAVENOUS FEEDING FOR ME. IN THE PRESENCE OF INTRAVENOUS FEEDING FOR ME. IN THE PRESENCE OF IRREVERSIBLE DISABILITY; THOU ANOINTEST MY HEAD IRREVERSIBLE DISABILITY; THOU ANOINTEST MY HEAD WITH OIL MY CUP RUNNETH ON AND ON AND ON AND ON. WITH OIL MY CUP RUNNETH ON AND ON AND ON AND ON. SURELY COMA AND UNCONSCIOUSNESS SHALL FOLLOW SURELY COMA AND UNCONSCIOUSNESS SHALL FOLLOW ME ALL THE DAYS OF MY CONTINUED BREATHING; AND I ME ALL THE DAYS OF MY CONTINUED BREATHING; AND I WILL DWELL IN THE INTENSIVE CARE UNIT FOREVERWILL DWELL IN THE INTENSIVE CARE UNIT FOREVER

A MODERN PSALMA MODERN PSALMbyby

Robert FraserRobert Fraser

What do we Know about Dying in What do we Know about Dying in AmericaAmerica??

■ 80% die in a hospital80% die in a hospital■ most die in moderate to most die in moderate to

severe painsevere pain■ many die bankrupt paying many die bankrupt paying

for medical carefor medical care■ most do not have living most do not have living

wills, DNR, medical power wills, DNR, medical power of attorneyof attorney

■ many are alienated from many are alienated from the medical systemthe medical system

■ physicians are not trained physicians are not trained to provide comforting careto provide comforting care

WHAT DO WE KNOW ABOUT WHAT DO WE KNOW ABOUT DOCTOR/PATIENT COMMUNICATION?DOCTOR/PATIENT COMMUNICATION?

■ doctors don’t listen to their doctors don’t listen to their patientspatients

■ doctors don’t talk about bad doctors don’t talk about bad newsnews

■ patients don’t retain much patients don’t retain much informationinformation

■ physicians are overly optimistic physicians are overly optimistic regarding prognosisregarding prognosis

■ physicians recommend physicians recommend treatments they would not take treatments they would not take themselvesthemselves

■ physicians have only 20% firm physicians have only 20% firm clinical trial data to support clinical trial data to support what they dowhat they do

THE RIGHT TO REFUSE MARGINALLY THE RIGHT TO REFUSE MARGINALLY EFFECTIVE MEDICAL TREATMENTSEFFECTIVE MEDICAL TREATMENTS

■ most of these cases involve the typical right to die most of these cases involve the typical right to die issuesissues

■ terminal ill patients, or their families seek legal terminal ill patients, or their families seek legal intervention when they believe that continued intervention when they believe that continued medical treatments no longer benefits the patient medical treatments no longer benefits the patient and the patient wants to die naturallyand the patient wants to die naturally

■ hospital administration/physicians refuse to hospital administration/physicians refuse to discontinue aggressive treatmentsdiscontinue aggressive treatments

■ the general rule is that patients have the right to the general rule is that patients have the right to refuse all medical treatments even if refusal means refuse all medical treatments even if refusal means death of a patientdeath of a patient

OTHER ISSUES WHICH COURTS HAVE OTHER ISSUES WHICH COURTS HAVE ADDRESSED IN REFUSAL CASESADDRESSED IN REFUSAL CASES

■ patient competencepatient competence■ treatment modality (feeding tube, respirator)treatment modality (feeding tube, respirator)■ surrogate disagreements on treatment plansurrogate disagreements on treatment plan■ who pays for unwanted and marginally effective who pays for unwanted and marginally effective

medical treatmentsmedical treatments■ physician’s duty to disclose statistical life physician’s duty to disclose statistical life

expectancy data for marginally effective medical expectancy data for marginally effective medical modalitiesmodalities

PATIENTS WHO REFUSE MEDICALLY PATIENTS WHO REFUSE MEDICALLY INDICATED TREATMENTINDICATED TREATMENT

patients may refuse because of the cost of patients may refuse because of the cost of medicinemedicine

patients are afraid of pain . Half the patients who died in the hospital had moderate to severe pain at least half the

time during their last few days

■ nothing…shall prohibit the nothing…shall prohibit the administration of administration of medication or the medication or the performance of any performance of any medical procedure deemed medical procedure deemed necessary to provide necessary to provide comfort care or to alleviate comfort care or to alleviate pain, including the pain, including the administration of excess administration of excess dosages of pain relieving dosages of pain relieving medications.medications.

OTHER REASONS PATIENTS REFUSE OTHER REASONS PATIENTS REFUSE INDICATED TREATMENTSINDICATED TREATMENTS

■ against religious beliefs, Jehovah Witnessesagainst religious beliefs, Jehovah Witnesses■ cultural differencecultural difference■ minority statusminority status■ undue influence of family membersundue influence of family members■ guiltguilt

PATIENT AUTONOMY & INFORMED PATIENT AUTONOMY & INFORMED CONSENTCONSENT

Courts uphold the right of a patient to consent Courts uphold the right of a patient to consent to or refuse any medical treatmentto or refuse any medical treatment

Jay Katz wrote in The Silent World of Doctor Jay Katz wrote in The Silent World of Doctor and Patient, “disclosure and consent, except and Patient, “disclosure and consent, except in the most rudimentary fashion, are in the most rudimentary fashion, are obligations alien to medical thinking and obligations alien to medical thinking and practice...The function of disclosure practice...The function of disclosure historically was to get patients to agree to historically was to get patients to agree to what the doctors wanted”.what the doctors wanted”.

STATE INTERESTS THAT LIMIT STATE INTERESTS THAT LIMIT PATIENT AUTONOMYPATIENT AUTONOMY

■ the preservation of lifethe preservation of life■ the protection of innocent third partiesthe protection of innocent third parties■ the prevention of suicidethe prevention of suicide■ the maintenance of the ethical integrity of the maintenance of the ethical integrity of

the medical profession and allied health the medical profession and allied health care workerscare workers

PRESERVATION OF LIFEPRESERVATION OF LIFE

When we balance the State’s interest in prolonging a When we balance the State’s interest in prolonging a patient’s life against the rights of the patient to patient’s life against the rights of the patient to reject such prolongation, we must recognize that reject such prolongation, we must recognize that the State’s interest in life encompasses a broader the State’s interest in life encompasses a broader interest than mere corporeal existence. In certain, interest than mere corporeal existence. In certain, thankfully rare, circumstances the burden of thankfully rare, circumstances the burden of maintaining the corporeal existence degrades the maintaining the corporeal existence degrades the very humanity it was meant to serve.very humanity it was meant to serve.

(Brophy v. New England Sinai Hospital)(Brophy v. New England Sinai Hospital)

PROTECTION OF INNOCENT THIRD PROTECTION OF INNOCENT THIRD PARTIESPARTIES

Court allowed a mother to forgo blood transfusions that Court allowed a mother to forgo blood transfusions that would save her lifewould save her life

““We must not assume from her choice that this mother was We must not assume from her choice that this mother was not considering the best interests of her children. As a not considering the best interests of her children. As a parent however, she must consider the example she sets parent however, she must consider the example she sets for her children, how to teach them to follow what she for her children, how to teach them to follow what she believes is God’s law if she herself does not. The choice believes is God’s law if she herself does not. The choice for her cannot be an easy one, but it is hers to make. It for her cannot be an easy one, but it is hers to make. It is not for this Court to judge the reasonableness or is not for this Court to judge the reasonableness or validity of her beliefs...the law must protect her right to validity of her beliefs...the law must protect her right to make that choice.”make that choice.”

A CHILD’S RIGHT TO REFUSE A CHILD’S RIGHT TO REFUSE MEDICAL TREATMENTMEDICAL TREATMENT

Courts routinely do intervene to require treatment for Courts routinely do intervene to require treatment for children whose parents deny consent for life saving children whose parents deny consent for life saving medical intervention for religious reasons. Courts medical intervention for religious reasons. Courts use the following analysis:use the following analysis:

■ determine whether any reasonable parent might determine whether any reasonable parent might withhold consentwithhold consent

■ if one might, the court will defer to the wishes of if one might, the court will defer to the wishes of the parentthe parent

■ if no reasonable parent would refuse consent the if no reasonable parent would refuse consent the court will order treatmentcourt will order treatment

STATE INTEREST IN THE STATE INTEREST IN THE PREVENTION OF SUICIDEPREVENTION OF SUICIDE

Most courts consider the motives of patients Most courts consider the motives of patients in refusing unwanted medical treatment as a in refusing unwanted medical treatment as a way to ameliorate physical pain and way to ameliorate physical pain and suffering and not an intent to commit suffering and not an intent to commit suicide. Most states have now removed suicide. Most states have now removed their criminal sanctions for suicide although their criminal sanctions for suicide although penalties remain for aiding and abetting penalties remain for aiding and abetting suicide.suicide.

PRESERVING THE INTEGRITY OF PRESERVING THE INTEGRITY OF THE MEDICAL PROFESSIONTHE MEDICAL PROFESSION

““Even if doctors were exhorted to attempt to cure or Even if doctors were exhorted to attempt to cure or sustain their patients under all circumstances, that sustain their patients under all circumstances, that moral and professional imperative, at least in cases of moral and professional imperative, at least in cases of patients who are competent, presumably would not patients who are competent, presumably would not require doctors to go beyond advising the patient of the require doctors to go beyond advising the patient of the risks of foregoing treatment and urging the patient to risks of foregoing treatment and urging the patient to accept the medical intervention. If the patient rejected accept the medical intervention. If the patient rejected the doctors advice, the onus of that decision would rest the doctors advice, the onus of that decision would rest on the patient, not the doctor. Indeed, if the patient’s on the patient, not the doctor. Indeed, if the patient’s right to informed consent is to have any meaning at all, right to informed consent is to have any meaning at all, it must be accorded respect even when it conflicts with it must be accorded respect even when it conflicts with the advice of the doctor or the values of the medical the advice of the doctor or the values of the medical profession as a whole.”profession as a whole.”

PATIENT SELF-DETERMINATION ACTPATIENT SELF-DETERMINATION ACT

■ Provide all adult patient/residents with written Provide all adult patient/residents with written information about their rights under state law to information about their rights under state law to make healthcare decisionsmake healthcare decisions

■ Maintain written policies and procedures regarding Maintain written policies and procedures regarding patient’s right to make medical decisionspatient’s right to make medical decisions

■ Document in the patient’s medical record whether Document in the patient’s medical record whether he/she has an advance directivehe/she has an advance directive

■ Ensure compliance with advance directives, Ensure compliance with advance directives, consistent with state lawconsistent with state law

■ Provide staff and community education on advance Provide staff and community education on advance directivesdirectives

■ Provides a mechanism for surrogates to make Provides a mechanism for surrogates to make medical decisions on behalf of a patient incapable medical decisions on behalf of a patient incapable of making his/her own decisionsof making his/her own decisions

■ Provides a suggested format for a living will and Provides a suggested format for a living will and medical power of attorneymedical power of attorney

■ Provides that physicians obtain informed consentProvides that physicians obtain informed consent■ Provides a mechanism for resolving conflict Provides a mechanism for resolving conflict

between patient/physician wishesbetween patient/physician wishes

VIRGINIA HEALTH CARE VIRGINIA HEALTH CARE DECISIONS ACTDECISIONS ACT

““Terminal condition” means a condition Terminal condition” means a condition

caused by injury, disease or illness from caused by injury, disease or illness from

which, to a reasonable degree of medical which, to a reasonable degree of medical

probability a patient cannot recover and (1) probability a patient cannot recover and (1)

the patient’s death is imminent or (2) the the patient’s death is imminent or (2) the

patient is in a PVSpatient is in a PVS

TERMINAL CONDITIONTERMINAL CONDITION

““Persistent vegetative state” means a condition caused by Persistent vegetative state” means a condition caused by

injury, disease or illness in which a patient has suffered a injury, disease or illness in which a patient has suffered a

loss of consciousness, with no behavioral evidence of self-loss of consciousness, with no behavioral evidence of self-

awareness or awareness of surroundings in a learned awareness or awareness of surroundings in a learned

manner, other than reflex activity of muscles and nerves for manner, other than reflex activity of muscles and nerves for

low level conditioned response, and from which, to a low level conditioned response, and from which, to a

reasonable degree of medical probability, there can be no reasonable degree of medical probability, there can be no

recoveryrecovery

PERSISTENT VEGETATIVE STATEPERSISTENT VEGETATIVE STATE

““Incapable of making an informed decision” means the inability of an Incapable of making an informed decision” means the inability of an adult patient, because of mental illness, mental retardation, or any adult patient, because of mental illness, mental retardation, or any other mental or physical disorder which precludes communication or other mental or physical disorder which precludes communication or impairs judgment and which has been diagnosed and certified in impairs judgment and which has been diagnosed and certified in writing by his attending physician and a second physician or licensed writing by his attending physician and a second physician or licensed clinical psychologist after personal examination of such patient, to clinical psychologist after personal examination of such patient, to make an informed decision about providing, withholding or make an informed decision about providing, withholding or withdrawing a specific medical treatment or course of treatment withdrawing a specific medical treatment or course of treatment because he is unable to understand the nature, extent or probable because he is unable to understand the nature, extent or probable consequences of the proposed medical decision, or to make a rational consequences of the proposed medical decision, or to make a rational evaluation of the risks and benefits of alternatives to that decision. For evaluation of the risks and benefits of alternatives to that decision. For purpose of this article, persons who are deaf, dyspasic or have other purpose of this article, persons who are deaf, dyspasic or have other communication disorders, who are otherwise mentally competent and communication disorders, who are otherwise mentally competent and able to communicate by means other than speech, shall not be able to communicate by means other than speech, shall not be considered incapable of making an informed decision.considered incapable of making an informed decision.

INCAPABLE OF MAKING AN INCAPABLE OF MAKING AN INFORMED DECISIONINFORMED DECISION

SURROGATE DECISION MAKINGSURROGATE DECISION MAKING

■ Person specified in living willPerson specified in living will■ a guardian or committeea guardian or committee■ the spousethe spouse■ an adult childan adult child■ a parenta parent■ an adult brother or sisteran adult brother or sister■ any other blood relativeany other blood relative

WHEN FAMILY MEMBERS WHEN FAMILY MEMBERS DISAGREEDISAGREE

If two or more of the persons listed in the If two or more of the persons listed in the same class…with equal decision-making same class…with equal decision-making priority inform the attending physician that priority inform the attending physician that they disagree as to a particular treatment they disagree as to a particular treatment decision, the attending physician may rely decision, the attending physician may rely on the authorization of a majority of the on the authorization of a majority of the reasonably available members of that classreasonably available members of that class

SURROGATE DUTIESSURROGATE DUTIES

■ Must determine religious beliefs and basic values of Must determine religious beliefs and basic values of patientpatient

■ Must inform patient that someone else is making Must inform patient that someone else is making the decisionthe decision

■ Must base decision on patients' values and beliefs if Must base decision on patients' values and beliefs if knownknown

■ If not known, on the patient’s best interestIf not known, on the patient’s best interest■ Must make a good faith effort to ascertain risks, Must make a good faith effort to ascertain risks,

benefits, alternatives to treatmentbenefits, alternatives to treatment

DUTY TO TRANSFER PATIENTDUTY TO TRANSFER PATIENT

54.1-2987 Va law requires that “attending 54.1-2987 Va law requires that “attending physician who refuses to comply with physician who refuses to comply with advance directive or the treatment decision advance directive or the treatment decision of person shall make a reasonable effort to of person shall make a reasonable effort to transfer the patient to another physician”. transfer the patient to another physician”. Physician shall also attempt to transfer Physician shall also attempt to transfer patient demanding treatment that is patient demanding treatment that is medically or ethically inappropriate.medically or ethically inappropriate.

Medically unnecessary treatment not Medically unnecessary treatment not required...Nothing in this article shall be construed required...Nothing in this article shall be construed to require a physician to prescribe or render to require a physician to prescribe or render medical treatment to a patient that the physician medical treatment to a patient that the physician determines to be medically or ethically determines to be medically or ethically inappropriate. However, in such a case, if the inappropriate. However, in such a case, if the physician’s determination is contrary to the terms physician’s determination is contrary to the terms of an advance directive of a qualified patient or the of an advance directive of a qualified patient or the treatment decision of a surrogate, the physician treatment decision of a surrogate, the physician shall make a reasonable effort to transfer the patient shall make a reasonable effort to transfer the patient to another physician.to another physician.

MEDICALLY UNNECESSARY MEDICALLY UNNECESSARY TREATMENTTREATMENT

LIFE-PROLONGING LIFE-PROLONGING PROCEDURESPROCEDURES

““Life prolonging procedure: means any medical Life prolonging procedure: means any medical procedure, treatment or intervention which (1) procedure, treatment or intervention which (1) utilizes mechanical or other artificial means to utilizes mechanical or other artificial means to sustain, restore or supplant a spontaneous vital sustain, restore or supplant a spontaneous vital function, or is otherwise of such a nature as to function, or is otherwise of such a nature as to afford a patient no reasonable expectation of afford a patient no reasonable expectation of recovery from a terminal condition (2) when recovery from a terminal condition (2) when applied to a patient in a terminal condition, would applied to a patient in a terminal condition, would serve only to prolong the dying process. The term serve only to prolong the dying process. The term includes artificially administered hydration and includes artificially administered hydration and nutrition.nutrition.

PAIN MANAGEMENTPAIN MANAGEMENT

Nothing in this act shall prohibit the Nothing in this act shall prohibit the administration of medication or the administration of medication or the performance of any medical procedure performance of any medical procedure deemed necessary to provide comfort care deemed necessary to provide comfort care or to alleviate pain, including the or to alleviate pain, including the administration of excess dosages of pain administration of excess dosages of pain relieving medicationsrelieving medications

ETHICAL DILEMMAS & ADVANCE ETHICAL DILEMMAS & ADVANCE DIRECTIVESDIRECTIVES

■ Federal law provides for an “inopportune” Federal law provides for an “inopportune” time to approach the subjecttime to approach the subject

■ Language in most forms using words Language in most forms using words “withhold” & “withdraw” foster a sense of “withhold” & “withdraw” foster a sense of abandonment that patients and physicians abandonment that patients and physicians should not wish to promulgateshould not wish to promulgate

■ Forms are legal documents rather than Forms are legal documents rather than clinical protocolsclinical protocols

■ Forms focus on treatment modalities rather Forms focus on treatment modalities rather than treatment planthan treatment plan

LEGAL DILEMMAS & ADVANCE LEGAL DILEMMAS & ADVANCE DIRECTIVESDIRECTIVES

■ State laws varyState laws vary■ Forms mislead public about its rights to Forms mislead public about its rights to

make medical decisionsmake medical decisions■ Forms are ambiguousForms are ambiguous■ Forms circumvent informed consent Forms circumvent informed consent

processprocess■ Difficult to understand causing a Difficult to understand causing a

disportional impact on minority peopledisportional impact on minority people■ Surrogates do not always represent wishes Surrogates do not always represent wishes

of patientof patient

THE FUTURETHE FUTURE

■ Reform the lawsReform the laws■ Change medical educationChange medical education■ Reform physician paymentsReform physician payments■ strengthen informed consent processstrengthen informed consent process■ Develop values historiesDevelop values histories■ Emphasize treatment plans over treatment Emphasize treatment plans over treatment

modalitiesmodalities

The Naturalness of DyingThe Naturalness of Dying

The medicalization of dying is a The medicalization of dying is a pernicious trend that runs pernicious trend that runs counter to several powerful counter to several powerful societal changes and results societal changes and results in wasteful and bad medical in wasteful and bad medical care. It deprives the dying of care. It deprives the dying of their autonomy, leading to their autonomy, leading to questions such as “Whose questions such as “Whose death is this?”- questions that death is this?”- questions that will be asked with more vigor will be asked with more vigor as the generation that grew up as the generation that grew up in a culture of narcissism in a culture of narcissism reaches seniorityreaches seniority..