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Chapter 18
End-of-Life Issues




                     2
Dreams of Immortality
•   Human struggle to survive
•   Desire to prevent & cure illness
•   Advances in medicine & power to prolong life
•   Process of dying can be prolonged
•   Ethical & legal issues have increased
    – involving entire life span, from right to be born to
      right to die


                                                             3
Noteworthy Historical Events - I

• 68,000-58,000 BC: Evidence of Belief
• 1932-72: Tuskegee Study of Syphilis
• 1932-1945: The Holocaust
• 1946: Military Tribunal for War Crimes
• 1949: Nuremberg Trials: Int’l Code of Medical
  Ethics
• 1954: First Kidney transplant


                                              4
Noteworthy Historical Events – II
• 1960s: Cardiopulmonary Resuscitation
• 1964: Guidelines for Research Involving Human
  Subjects
• 1968: Harvard Medical School
   – Report on Brain Death Criteria
• 1964: World Medical Association
   – 1970: Patient as a Person by Paul Ramse
   – “paternalism” questioned


                                                  5
Noteworthy Historical Events – III
•   1971: Kennedy Institute of Ethics at Georgetown
•   1972: Informed Consent
•   1973: Women’s Right to Abortion
•   1975: Cloning a Frog
•   1974: National Research Act of 1974
•   1976: Substituted Judgment Permitted
     – In the Matter of Karen Ann Quinlan
     – First Living Will Legislation
     – First Living Will Statute
                                                      6
Noteworthy Historical Events – IV
•    1978: President’s Commission, Study of Ethical
     Problems in Medicine
•    1980: Hemlock Society Formed
•    1983: First Durable Power of Attorney
•    1990: Patient Self-Determination Act of 1990
    – Feeding tube removed
•    1991: Lethal Dose of Medication Prescribed



                                                      7
Noteworthy Historical Events – V
• 1992: The Final Exit
• 1993: A Patient’s Wishes Honored
• 1994: Death with Dignity Legal Medical Option
   – Physician–Assisted Suicide Illegal Act
• 1996: HIPAA
   – Constitutional Right to Die




                                                  8
Noteworthy Historical Events – VI

• 1997: Physician-Assisted Suicide Referendum
  – Cloning Dolly
  – Kevorkian Charged with Murder
  – States May Enact Medically Assisted Death Laws
• 1998: Oregon voters reaffirm support for
  Death with Dignity Act
  – Lethal Injection Televised
  – Ballot for Physician-Assisted Suicide Defeated

                                                     9
Noteworthy Historical Events – VII
• 1999: Kevorkian convicted of Murder
• 2000: Seven Myths About End-of-Life Care
• 2001: President's Council on Bioethics Established
   – Assisted Suicide Act Challenged
• 2002: U.S. District Court Upholds Oregon’s Death
  with Dignity Act
   – Attorney General Appeals District Court Decision
• 2003: Human Genome Fully Sequenced
• 2006: Stem Cell Research Controversy

                                                        10
Noteworthy Historical Events – VIII
• 2004: U.S. Circuit Court of Appeals Upholds
  Oregon’s Death with Dignity Act
• 2005: “Human Cloning, Ethical Issues” publication
• 2006: US Supreme Court Upholds Death with
  Dignity Act
   – Blocks Bush’s Attempt to Punish Doctors
   – Morning-After-Pill
• 2010: Legislation for Living Will Registry


                                                      11
END-OF-LIFE ISSUES
• Autonomy
  – Right of a person to make one’s own decisions.
  – Patient has right to accept or refuse care even if it
    is beneficial to saving his or her life.
  – Autonomy may be inapplicable in certain cases
      • affected by one’s disabilities, mental
        status, maturity, or incapacity to make
        decisions.


                                                            12
Defining Death
• “Irreversible cessation of all brain functions including
  the brain stem.”
• Evidence of a patient’s intention to reject the
  prolongation of life by artificial means
   – Persistence statements regarding individual’s
     beliefs
   – Desirability of the commitment to those beliefs
   – Seriousness with which such statements were
     made
   – Inferences that may be drawn from surrounding
     circumstances                                       13
Constitutional Right to Refuse Care

The Supreme Court analyzed the issues
 presented in the Cruzan case in terms of a 14th
 Amendment liberty interest, finding that a
 competent person has a constitutionally
 protected right grounded in the due-process
 clause to refuse lifesaving hydration and
 nutrition.



                                               14
Legislative Response
Patient Self-Determination Act of 1990
  – enacted to ensure that patients are informed of
    their rights to execute advance directives and
    accept or refuse medical care




                                                      15
Euthanasia - I
• Mercy killing of hopelessly ill, injured or
  incapacitated
• Active Euthanasia
   – intentional commission of an act, such as giving
     patient lethal drug
• Passive Euthanasia
   – occurs when life-saving treatment (such as a
     respirator) is withdrawn or withheld



                                                        16
Euthanasia - II
• Voluntary Euthanasia
   – occurs when suffering incurable patient makes
     decision to die
• Involuntary Euthanasia
   – occurs when a person other than incurable makes
     decision to terminate life of an incompetent or an
     non-consenting competent person's life




                                                          17
Assisted Suicide
• Oregon’s Death with Dignity Act of 1994

• U.S. Supreme Court, in two unanimous & separate
  decisions, ruled
   – laws in Washington & New York prohibiting
     assisted suicide are constitutional
   – yet U.S. Supreme Court also ruled that states can
     allow doctors to assist in suicide of their terminally
     ill patients.

                                                          18
Advance Directives - I
• Instructions given by individuals specifying what
  actions should be taken for their health in the event
  that they are no longer able to make health care
  decisions due to illness or incapacity

   – Living Will
      • the instrument or legal document that describes those
        treatments an individual wishes or does not wish to
        receive should he or she become incapacitated and
        unable to communicate treatment decisions.


                                                                19
Advance Directives - II
• Health Care Proxy
                  - Legal document that allows a
              person to appoint a health care agent
              to make treatment decisions in the
              event he or she becomes
              incapacitated and is unable to make
              decisions for him- or her-self

    • Durable Power of Attorney
    • Determining Incapacity
    • Agent’s Rights
                                                      20
Advance Directives - III
– Durable Power of Attorney
   • durable power of attorney is a legal device that
     permits one individual, known as the
     “principal,” to give to another person, called the
     “attorney-in-fact,” the authority to act on his or
     her behalf.
– Surrogate Decision-Making
   – an agent who acts on behalf of a patient who
     lacks the capacity to participate in a particular
     decision
                                                      21
Advance Directives - IV
– Substituted Judgment
   • form of surrogate decision-making where the
     surrogate attempts to establish what decision the
     patient would have made if that patient were
     competent to do so
– Spousal Rights in Decision-Making
– Guardianship
   • legal mechanism by which the court declares a
     person incompetent and appoints a guardian

                                                     22
Making Medical Preferences Known

• Patients have an obligation to make medical
  preferences known to treating physician.
• Any glimmer of uncertainty as to a patient's
  desires in an emergency situation should be
  resolved in favor of preserving life.




                                                 23
Futility of Treatment
• Physician recognizes effect of treatment will
  be of no benefit to the patient.
• Morally, a physician has a duty to inform
  patient when there is little likelihood of
  success.
• Determination as to futility of medical care is a
  scientific decision.

                                                  24
Withdrawal of Treatment
• Patient is in a terminal condition & there is a
  reasonable expectation of imminent death of the
  patient
• Patient in a non-cognitive state with no reasonable
  possibility of regaining cognitive function
• Restoration of cardiac function will last for a brief
  period.
• Feeding Tubes
• When Life-Sustaining Measures Futile

                                                          25
DNR Orders
• DNR orders written by a physician, indicate
  that in event of cardiac or respiratory arrest, no
  resuscitative measures should be used to
  revive patient.
• Competent Patients Make their Own Decisions




                                                   26
Autopsy
•   Autopsy consent statutes
•   Authorization by the decedent
•   Autopsy Consent Statutes
•   Authorization by Decedent
•   Authorization by other than decedent
•   Scope & extent of consent
•   Fraudulently obtained consent
•   Determination of death
•   Unclaimed dead bodies
                                           27
Organ Donations - I
• Federal regulations require hospitals to have, &
  implement, written protocols regarding organization's
  organ procurement.
• Regulations impose notification duties concerning
  informing families of potential donors.
• Discretion & sensitivity in dealing with families




                                                      28
Organ Donations - II
• Educating hospital staff on variety of issues
  involved with donation matters, in order to
  facilitate timely donation & transplantation.
• Who Lives? Who Dies? Who Decides?
• Uniform Anatomical Gift Act
• Failure to Obtain Consent



                                                  29
Research, Experimentation & Clinical
               Trials
•   Institutional Review Board
•   Informed Consent
•   Research Bill of Rights & Duty to Warn
•   Failure to Informed Obtain Consent
•   Duty to Warn
•   Food & Drug Administration
•   Nursing facilities
•   Patient Understood the Risks
                                             30
Human Genetics - I
• Genetic Markers
   – DNA sequences with a known location on a
     chromosome that can be used to identify specific
     cells and diseases, as well as, individuals and
     species
• Genetic Information Nondiscrimination Act of
  2008
   – prohibits discrimination on the basis of genetic
     information with respect to the availability of
     health insurance and employment
                                                        31
Human Genetics - II
• Stem Cell Research
  – use of embryonic stem cells to create organs and various
    body tissues




                                                               32
REVIEW QUESTIONS - I
1. What is euthanasia?

2.What is the difference between active and passive
   euthanasia?

3. What is the difference between voluntary and
   involuntary euthanasia?

4. Describe the different forms of advance directives
    (e.g., living will).


                                                        33
REVIEW QUESTIONS - II
5. Discuss the protocol describe in Oregon’s Death with
   Dignity Act.
6. Why is organ procurement so important to each
   individual?
7. What is a genetic marker?
8. Why was the Genetic Information Nondiscrimination
   Act enacted?
9. Discuss why stem cell research so controversial.


                                                      34

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5530: Chapter 18

  • 1.
  • 3. Dreams of Immortality • Human struggle to survive • Desire to prevent & cure illness • Advances in medicine & power to prolong life • Process of dying can be prolonged • Ethical & legal issues have increased – involving entire life span, from right to be born to right to die 3
  • 4. Noteworthy Historical Events - I • 68,000-58,000 BC: Evidence of Belief • 1932-72: Tuskegee Study of Syphilis • 1932-1945: The Holocaust • 1946: Military Tribunal for War Crimes • 1949: Nuremberg Trials: Int’l Code of Medical Ethics • 1954: First Kidney transplant 4
  • 5. Noteworthy Historical Events – II • 1960s: Cardiopulmonary Resuscitation • 1964: Guidelines for Research Involving Human Subjects • 1968: Harvard Medical School – Report on Brain Death Criteria • 1964: World Medical Association – 1970: Patient as a Person by Paul Ramse – “paternalism” questioned 5
  • 6. Noteworthy Historical Events – III • 1971: Kennedy Institute of Ethics at Georgetown • 1972: Informed Consent • 1973: Women’s Right to Abortion • 1975: Cloning a Frog • 1974: National Research Act of 1974 • 1976: Substituted Judgment Permitted – In the Matter of Karen Ann Quinlan – First Living Will Legislation – First Living Will Statute 6
  • 7. Noteworthy Historical Events – IV • 1978: President’s Commission, Study of Ethical Problems in Medicine • 1980: Hemlock Society Formed • 1983: First Durable Power of Attorney • 1990: Patient Self-Determination Act of 1990 – Feeding tube removed • 1991: Lethal Dose of Medication Prescribed 7
  • 8. Noteworthy Historical Events – V • 1992: The Final Exit • 1993: A Patient’s Wishes Honored • 1994: Death with Dignity Legal Medical Option – Physician–Assisted Suicide Illegal Act • 1996: HIPAA – Constitutional Right to Die 8
  • 9. Noteworthy Historical Events – VI • 1997: Physician-Assisted Suicide Referendum – Cloning Dolly – Kevorkian Charged with Murder – States May Enact Medically Assisted Death Laws • 1998: Oregon voters reaffirm support for Death with Dignity Act – Lethal Injection Televised – Ballot for Physician-Assisted Suicide Defeated 9
  • 10. Noteworthy Historical Events – VII • 1999: Kevorkian convicted of Murder • 2000: Seven Myths About End-of-Life Care • 2001: President's Council on Bioethics Established – Assisted Suicide Act Challenged • 2002: U.S. District Court Upholds Oregon’s Death with Dignity Act – Attorney General Appeals District Court Decision • 2003: Human Genome Fully Sequenced • 2006: Stem Cell Research Controversy 10
  • 11. Noteworthy Historical Events – VIII • 2004: U.S. Circuit Court of Appeals Upholds Oregon’s Death with Dignity Act • 2005: “Human Cloning, Ethical Issues” publication • 2006: US Supreme Court Upholds Death with Dignity Act – Blocks Bush’s Attempt to Punish Doctors – Morning-After-Pill • 2010: Legislation for Living Will Registry 11
  • 12. END-OF-LIFE ISSUES • Autonomy – Right of a person to make one’s own decisions. – Patient has right to accept or refuse care even if it is beneficial to saving his or her life. – Autonomy may be inapplicable in certain cases • affected by one’s disabilities, mental status, maturity, or incapacity to make decisions. 12
  • 13. Defining Death • “Irreversible cessation of all brain functions including the brain stem.” • Evidence of a patient’s intention to reject the prolongation of life by artificial means – Persistence statements regarding individual’s beliefs – Desirability of the commitment to those beliefs – Seriousness with which such statements were made – Inferences that may be drawn from surrounding circumstances 13
  • 14. Constitutional Right to Refuse Care The Supreme Court analyzed the issues presented in the Cruzan case in terms of a 14th Amendment liberty interest, finding that a competent person has a constitutionally protected right grounded in the due-process clause to refuse lifesaving hydration and nutrition. 14
  • 15. Legislative Response Patient Self-Determination Act of 1990 – enacted to ensure that patients are informed of their rights to execute advance directives and accept or refuse medical care 15
  • 16. Euthanasia - I • Mercy killing of hopelessly ill, injured or incapacitated • Active Euthanasia – intentional commission of an act, such as giving patient lethal drug • Passive Euthanasia – occurs when life-saving treatment (such as a respirator) is withdrawn or withheld 16
  • 17. Euthanasia - II • Voluntary Euthanasia – occurs when suffering incurable patient makes decision to die • Involuntary Euthanasia – occurs when a person other than incurable makes decision to terminate life of an incompetent or an non-consenting competent person's life 17
  • 18. Assisted Suicide • Oregon’s Death with Dignity Act of 1994 • U.S. Supreme Court, in two unanimous & separate decisions, ruled – laws in Washington & New York prohibiting assisted suicide are constitutional – yet U.S. Supreme Court also ruled that states can allow doctors to assist in suicide of their terminally ill patients. 18
  • 19. Advance Directives - I • Instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make health care decisions due to illness or incapacity – Living Will • the instrument or legal document that describes those treatments an individual wishes or does not wish to receive should he or she become incapacitated and unable to communicate treatment decisions. 19
  • 20. Advance Directives - II • Health Care Proxy - Legal document that allows a person to appoint a health care agent to make treatment decisions in the event he or she becomes incapacitated and is unable to make decisions for him- or her-self • Durable Power of Attorney • Determining Incapacity • Agent’s Rights 20
  • 21. Advance Directives - III – Durable Power of Attorney • durable power of attorney is a legal device that permits one individual, known as the “principal,” to give to another person, called the “attorney-in-fact,” the authority to act on his or her behalf. – Surrogate Decision-Making – an agent who acts on behalf of a patient who lacks the capacity to participate in a particular decision 21
  • 22. Advance Directives - IV – Substituted Judgment • form of surrogate decision-making where the surrogate attempts to establish what decision the patient would have made if that patient were competent to do so – Spousal Rights in Decision-Making – Guardianship • legal mechanism by which the court declares a person incompetent and appoints a guardian 22
  • 23. Making Medical Preferences Known • Patients have an obligation to make medical preferences known to treating physician. • Any glimmer of uncertainty as to a patient's desires in an emergency situation should be resolved in favor of preserving life. 23
  • 24. Futility of Treatment • Physician recognizes effect of treatment will be of no benefit to the patient. • Morally, a physician has a duty to inform patient when there is little likelihood of success. • Determination as to futility of medical care is a scientific decision. 24
  • 25. Withdrawal of Treatment • Patient is in a terminal condition & there is a reasonable expectation of imminent death of the patient • Patient in a non-cognitive state with no reasonable possibility of regaining cognitive function • Restoration of cardiac function will last for a brief period. • Feeding Tubes • When Life-Sustaining Measures Futile 25
  • 26. DNR Orders • DNR orders written by a physician, indicate that in event of cardiac or respiratory arrest, no resuscitative measures should be used to revive patient. • Competent Patients Make their Own Decisions 26
  • 27. Autopsy • Autopsy consent statutes • Authorization by the decedent • Autopsy Consent Statutes • Authorization by Decedent • Authorization by other than decedent • Scope & extent of consent • Fraudulently obtained consent • Determination of death • Unclaimed dead bodies 27
  • 28. Organ Donations - I • Federal regulations require hospitals to have, & implement, written protocols regarding organization's organ procurement. • Regulations impose notification duties concerning informing families of potential donors. • Discretion & sensitivity in dealing with families 28
  • 29. Organ Donations - II • Educating hospital staff on variety of issues involved with donation matters, in order to facilitate timely donation & transplantation. • Who Lives? Who Dies? Who Decides? • Uniform Anatomical Gift Act • Failure to Obtain Consent 29
  • 30. Research, Experimentation & Clinical Trials • Institutional Review Board • Informed Consent • Research Bill of Rights & Duty to Warn • Failure to Informed Obtain Consent • Duty to Warn • Food & Drug Administration • Nursing facilities • Patient Understood the Risks 30
  • 31. Human Genetics - I • Genetic Markers – DNA sequences with a known location on a chromosome that can be used to identify specific cells and diseases, as well as, individuals and species • Genetic Information Nondiscrimination Act of 2008 – prohibits discrimination on the basis of genetic information with respect to the availability of health insurance and employment 31
  • 32. Human Genetics - II • Stem Cell Research – use of embryonic stem cells to create organs and various body tissues 32
  • 33. REVIEW QUESTIONS - I 1. What is euthanasia? 2.What is the difference between active and passive euthanasia? 3. What is the difference between voluntary and involuntary euthanasia? 4. Describe the different forms of advance directives (e.g., living will). 33
  • 34. REVIEW QUESTIONS - II 5. Discuss the protocol describe in Oregon’s Death with Dignity Act. 6. Why is organ procurement so important to each individual? 7. What is a genetic marker? 8. Why was the Genetic Information Nondiscrimination Act enacted? 9. Discuss why stem cell research so controversial. 34