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Legal Guidelines for End of Life Issues

Legal Guidelines for End of Life Issues

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Legal Guidelines for End of Life Issues

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  1. Legal Guidelinesfor End of Life Issues

    Major Catherine M. With, JD, LLM, LLM Legal Counsel The Armed Forces Institute of Pathology March 2008
  2. This Presentation …. IS AN ACTUAL DISCUSSION OF D E A T H BY …… POWERPOINT!!!
  3. Law and Ethics … “In civilized life, law floats in a sea of ethics. Each is indispensable to civilization. Without law, we should be at the mercy of the least scrupulous; without ethics, law could not exist.” Chief Justice Earl Warren Supreme Court of the United States
  4. What is so unique about death? “Nascentes morimur finisque ab origine pendet.” “From the moment of birth, we begin to die and the end hangs from the beginning.” Marcus Manilius, Astronomica (AD 10) “And none of us are going to get out of this life … alive!!!!”
  5. The LEGAL Implications of Death Private, Family law: Termination of legal, maintenance obligations Law of succession - Succession in property, rights and obligations Substantive criminal law - Transition from life to death (murder, abortion, euthanasia, suicide)
  6. The LEGAL Implications of Death Criminal procedural law - Investigation of (unnatural, suspicious) death Administrative law - Documentation of death, death certificates and causes of death, regulation of burials Health and Social Welfare Law - Care and health services law; Narcotics law
  7. The LEGAL Implications of Death Medical law - Transplantation of organs; Stem Cell research Constitutional law - Right to life, right to death; Rights after death (privacy, dignity of humans and denial of the holocaust); Death penalty (dignity of humans) Election law - Election, death and succession in political offices
  8. The U.S. Agency for Healthcare Research and Quality (, in a 2003 article, “Advance Care Planning: Preferences for Care at the End of Life,”found the following: Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record. Only 12 percent of patients with an advance directive had received input from their physician in its development. Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.
  9. More Americans Discussing – and Planning – End-of-Life Treatment. The Pew Research Center, January 2006. 42% of Americans have had a friend or relative suffer from a terminal illness or coma in the last five years and for a majority of these people and 23% of the general public, the issue of withholding life sustaining treatment came up. An overwhelming majority of the public supports laws that give patients the right to decide whether they want to be kept alive through medical treatment. By more than eight-to-one (84%-10%), the public approves of laws that let terminally ill patients make decisions about whether to be kept alive through medical treatment. One of the most striking changes between 1990 and 2005 is the growth in the number of people who say they have a living will – up 17 points, from 12% in 1990 to 29% now.
  10. Brief Communication: The Relationship between Having a Living Will and Dying in Place. Howard B Degenholtz, PhD, YonJoo Rhee, MPH, PhD; and Robert Arnold, MD. Annals of Internal Medicine. 2004; 141:113-117. Having a living will was associated with lower probability of dying in a hospital for nursing home residents and people living in the community. During advance care planning, physicians should discuss patients’ preferences for locations of death.
  11. Appropriate Use of Artificial Nutrition and Hydration – Fundamental Principles and Recommendations. David Casarett, MD, Jennifer Kapo, MD and Arthur Caplan, PhD. New England Journal of Medicine. 2005; 353: 24. Patients and families are often not fully informed of the relevant risks and potential benefits of artificial nutrition and hydration (ANH). In addition, financial incentives and regulatory concerns promote the use of ANH in a manner that may be inconsistent with medical evidence and with the preferences of patients and their families. Because ANH is associated with uncertain benefits and substantial risks, it is essential to ensure that decisions about its use are consistent with the patient’s medical condition, prognosis, and goals for care. Therefore, decisions about ANH require careful consideration of its risks and potential benefits.
  12. The House of Life
  13. Right to die Beneficence Non-maleficence Fetus Minors Right to refuse/withdraw and withhold treatment Adults Autonomy Informed Consent
  14. Right to die House of Life Emerging Issues: Futility, Assisted Death, Palliative Care, Cultural & Religious issues, Post-Mortem Reproduction Fetus Viable Casey Stenberg Non-viable Casey Legally Incompetent Miller, Newmark, In Re TACP Mature In Re E.G., In Re Long Is. Jewish Emancipated Treated like Adults Minors Right to refuse, withdraw, and withhold treatment With Mental Capacity Bouvia, Satz, Bartling, McKay Never had Mental Capacity Saikewicz Storar Had Mental Capacity & Lost Capacity Quinlan, Cruzan, Schiavo, In Re AC, Eichner, Conroy, Brophy, Jobes, Adults AutonomyRight to Privacy Informed Consent Beneficence Non-Maleficence
  15. Informed Consent Schloendorff v. Society of New York Hospital, 105 N.E. 92 (N.Y. 1914) In 1908, a woman goes to a New York Hospital suffering from stomach problems Her doctor suggested an “ether exam”; she agreed; however, he performed and unauthorized surgery and removed a uterine fibroid; she developed gangrene and had a finger amputated Judge Cardozo forged a doctrine protecting patients from treatment in the absence of consent: “Every human being of adult years and sound mind has right to determine what shall be done with his own body.”
  16. Informed Consent Salgo v. Leland Stanford Junior University Board of Trustees, 317 P.2d 170 (Cal.Ct.App. 1957) Patient had a translumbar aortography and the dye caused a rare reaction and paralysis The first case to use the term “informed consent.” Physicians must ensure there is full disclosure of information so that a patient’s decision is adequately informed.
  17. Informed Consent Canterbury v. Spence, 464 F.2d 772 (D.C.Cir. 1972) Pt fell from bed after a laminectomy, developed paralysis; claimed physician never disclosed the risk of paralysis “The patient’s right of self-decision shapes the boundaries of the duty to reveal. That right can be effectively exercised only if the patient possesses enough information to enable an intelligent choice … a risk is thus material when a reasonable person, in what the physician knows or should know to be the patient’s position, would be likely to attach significance to the risk or cluster of risks in deciding whether or not to forego the proposed therapy.”
  18. Informed Consent This notion that informed consent is required for medical treatment preserves the concept of bodily integrity There is a critical, logical corollary of the doctrine of informed consent: the patient generally possesses the right not to consent, that is, the right to refuse treatment.
  19. Autonomy Personal autonomy is an extraordinarily powerful principle in the western democracies “The only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant.” John Stuart Mill, On Liberty (1859) The most influential modern cases concerning the withdrawal or withholding of care rely heavily on the doctrine of personal autonomy
  20. Right to Privacy A patient’s right to privacy is linked with the right not to be treated absent informed consent; the touching of another person without consent and legal justification is a battery The Supreme Court of the United States identified a Constitutional right to privacy
  21. Traditional Compelling State Interests Preservation of Life Protection of Dependent Third Parties Prevention of Suicide* Maintenance of Ethical Integrity of the Medical Profession *Suicide is not a crime in any state.
  22. Adults With Mental Capacity Bouvia v. Superior Court, 225 Cal.Rptr. 297 (1986) Non-Terminal Patient Has Right Of Privacy, To Include A Right To Die Intent Is Not To Die, But To Discontinue Artificially Provided Means To Life If That Means Is Overly Burdensome Satz v. Perlmutter, 379 So.2d 359 (1980) Bartling v. Superior Court, 209 Cal.Rptr. 220 (Cal.App.2Dist. 1984) McKay v. Bergstedt, 801 P.2d 617 (Nev. 1990)
  23. Adults With Mental Capacity Tune v. Walter Reed Army Medical Hospital, 602 F.Supp. 1452 (D.D.C. 1985). The court held that competent adultpatients offederal medical facilitieswithterminal illnesses have a right to determine for themselves whether to allow their lives to be prolonged by artificial means.
  24. What happens when a patient does not have advance directives? (1) Patient Intent - Try to determine if this patient already decided – did this patient express a clear intention about whether they would want care withheld in this situation (subjective) - if there were reliable evidence to the effect that he said he didn’t want a tube if he were ever in this situation, then that evidence could hold a lot of weight. But it is very rare, and unlikely that someone will have expressed their intent clearly about the exact situation at issue
  25. What happens when a patient does not have advance directives? (2) Substituted Judgment – A surrogate decision maker attempts to establish, with as much accuracy as possible, what decision the patient would makeif he were competent to do so (also subjective) (3) Best Interests – Try to act in the best interests of the patient – what would a reasonable patient do in this situation (objective)
  26. Adults Who Had Mental Capacity& Lost Mental Capacity Matter of Quinlan, 355 A.2d 647 (N.J. 1976) Substituted Judgment meets Consent Requirement 14th Amendment “Right to privacy” exists in the patients’ end-of-life decisions. ***However, not unfettered; must be balanced with the rights of the states. Recognition Of Right Of Privacy Against Bodily Intrusion Utilized An “Ordinary Vs. Extraordinary” Life Support Standard Allowed For Guardian Decision-making With Incompetent Patient Clarified Compelling State Interests Standards
  27. Adults Who Had Mental Capacity& Lost Mental Capacity Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990) There Is A Fourteenth Amendment Liberty Interest For Competent Persons Having A Protected Right To Refuse Life-Saving Nutrition And Hydration Incompetent Persons May Not Have That Same Right Due To Lack Of Clear Informed Consent States May Set Guidelines Governing Threshold Of Evidence To Permit Surrogate End Of Life Decisions States may use their own standard of proof in determining surrogate end of life decisions
  28. Adults Who Had Mental Capacity& Lost Mental Capacity Bush v. Schiavo, 866 So.2d 136 (Fla.App.2Dist. 2004)
  29. Adults Who Had Mental Capacity& Lost Mental Capacity American Academy of Neurology (AAN) Definitions of Vegetative State (VS) Definitions of Minimally Conscious State (MCS) See various studies (Schiff; Owen; Di; Cranford; Hammesfahr) Uses of Function MRI (fMRI) There is some emerging evidence of “conscious awareness” for some patients fulfilling criteria for vegetative state. Issue: If VS is element addressed in an Advanced Directive, how does this new understanding change the decision-making?
  30. Adults Who Had Mental Capacity& Lost Mental Capacity In Re Conroy, 486 A.2d 1209 (N.J. 1985) Life-sustaining treatment may be withheld or withdrawn from an incompetent patient when it is clear that the patient would have refused the treatment under the particular circumstances. In the absence of evidence of what the patient would have done in the specific situation, life sustaining treatment or support may be withdrawn from an incompetent person when it is clear that the treatment would merely prolong suffering. No such decision may be based upon an assessment of the personal worth or social utility of an incompetent patient's life.
  31. Adults Who Had Mental Capacity& Lost Mental Capacity In Re Eichner, 420 N.E.2d 64 (N.Y. 1981) Court is applying the clear and convincing evidence of the patient’s actual intent Brophy v. New England Sinai Hospital, Inc., 497 N.E.2d 626 (Mass. 1986) Brophy died, becoming the first American to die after court-authorized discontinuation of artificial nutrition and hydration to a comatose patient. In Re Jobes, 529 A.2d 434 (N.J. 1987) In Re A.C., 573 A.2d 1235 (D.C. 1990)
  32. Adults Who Never Had Mental Capacity – Legally Incompetent Superintendent of Belchertown State School v. Saikewicz, 370 N.E.2d 417 (Mass. 1977) Applied a standard of substituted judgment Should attempt to ascertain the incompetent person’s actual interests and preferences, and the decision should reflect what the incompetent person would do if they were competent In Re Storar, 420 N.E.2d 64 (N.Y. 1981) Unrealistic to apply substituted judgment because it is impossible to determine whether this person would want to continue with lifesaving treatment if competent So they use best interests and determine the transfusions should continue
  33. Minors – Legally Incompetent Miller v. HCA, Inc., 118 S.W.3d 758 (Tex. 2003) Newmark v. Williams, 588 A.2d 1108 (Del. 1991) In Re T.A.C.P., 609 So.2d 588 (Fla. 1992).
  34. “Mature” Minors In Re E.G., 549 N.E.2d 322 (Ill. 1989) In Re Long Island Jewish Medical Center, 557 N.Y.S.2d 239 (Sup. 1990)
  35. Fetus - Viable Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992) Stenberg v. Carhart, 530 U.S. 914 (2000)
  36. Fetus – Non Viable Planned Parenthood of Southeastern Pennsylvania v. Casey, 505 U.S. 833 (1992)
  37. Futility In Re Wanglie, No. PX-91-283 (Minn.Dist.Ct. 1993) In Re Baby K, 16 F.3d 590 (4th Cir. 1994)
  38. Futility Virginia Code § 54.1-2990 Nothing in this article shall be construed to require a physician to prescribe or render medical treatment to a patient that the physician determines to be medically or ethically inappropriate. However, in such a case, if the physician's determination is contrary to the terms of an advance directive of a qualified patient or the treatment decision of a person designated to make the decision under this article or a Durable Do Not Resuscitate Order, the physician shall make a reasonable effort to inform the patient or the patient's designated decision-maker of such determination and the reasons for the determination. If the conflict remains unresolved, the physician shall make a reasonable effort to transfer the patient to another physician who is willing to comply with the terms of the advance directive. The physician shall provide the patient or his authorized decision-maker a reasonable time of not less than fourteen days to effect such transfer. During this period, the physician shall continue to provide any life-sustaining care to the patient which is reasonably available to such physician, as requested by the patient or his designated decision-maker.
  39. Life Sustaining Treatment: What is it? Resuscitation Elective intubation Surgery Dialysis Blood transfusions, blood products Diagnostic tests Artificial nutrition & hydration Antibiotics Other treatments Future hospital or ICU admissions
  40. Do Not Attempt Resuscitation, No Codes,Abatement Orders Confirms that if cardiopulmonary arrest occurs, no resuscitative measures will be instituted Written physician order required Rules vary by state See Service Regulation
  41. Assisted Death Gonzalez v. Oregon, 126 S. Ct. 904 (2006) The Oregon Death With Dignity Act – Or. Rev. Stat. 127.800-.897 Assisted death / suicide occurs when another provides a means with knowledge of the patient’s intent to use it to end his or her life Assisted death is legal in Oregon Annual Reports: Washington v. Glucksberg, 521 U.S. 702 (1997) Vacco v. Quill, 521 U.S. 793 (1997)
  42. Euthanasia & Suicide Euthanasia is an act by which the causative agent of death is administered by another with the intent to end life
  43. Palliative Care – A Must Estate of Leach v. Shapiro, 469 N.E.2d 1047 (OhioApp. 1984) – tort liability for failure to recognize a decision to forgo life sustaining treatment Barber v. Superior Court, 195 Cal.Rptr. 484 (Cal.App.2Dist. 1983) – physician charged with criminal conduct for termination of treatment – physician ultimately vindicated
  44. The Other Issues Cultural Differences Religious Requirements Post-Mortem Reproduction Tissue/Organ retention (Hainey)
  46. Office of the Armed Forces Medical Examiner
  47. CAPT Dr. Craig Mallak, MC, USN The Armed Forces Medical Examiner
  48. Federal Law - 10 USC 1471 Authority for Autopsies Explains jurisdiction Expands previous jurisdiction DoDI 5154.30 - March 2003
  49. Basis for Investigation If decedent was killed If the cause of death was unnatural If cause / manner of death is unknown If cause appears to be by unlawful means If cause is from infectious disease or hazardous material that may have an adverse effect on installation or community If the identity of decedent is unknown
  50. Scope of Autopsy Forensic case: NO LIMITATIONS Complete exam every time, to include brain Family may restrict exam on “hospital” autopsies but not Forensic autopsies
  51. Religious Objection 10 USC 1471 requires that OAFME give “due regard to any applicable law protecting religious beliefs.” OAFME will consider a family’s wishes
  52. Viewing of Remains Viewing remains under Jurisdiction of the Medical Examiner Touching is forbidden until case complete Viewing is highly discouraged and depending on the circumstances may be forbidden Viewing is forbidden at the Dover facility
  53. Next of kin consent forForensic cases Consent of NOK will not be sought for forensic cases NOK will be informed (if they can be located) that autopsy is necessary, in their best interest & authorized by Federal law Religious concerns are addressed Requesting consent of NOK in forensic cases may result in a conflict if the NOK declines autopsy Utmost empathy required in explaining circumstances. Use your resources.
  54. Armed Forces Institute of Pathology Located on the grounds of Walter Reed Army Medical Center, Washington, DC
  55. Armed Forces Medical Examiner System Offices Located in Rockville, MD Former Gillette animal testing facility
  56. Dover Port Mortuary Dover Air Force Base – 120 miles from Washington, DC Opened November 2003
  57. Dover Port Mortuary Operation Iraqi Freedom Operation Enduring Freedom 100% autopsy on every casualty Complete investigations Body Armor evaluations
  58. Beyond the Autopsy Evaluation of helmets and body armor Evaluate shrapnel to rule out friendly fire
  59. Mass Casualties & the Dover AFB Port Mortuary Commingling of body parts Explosions High speed crashes (aircraft) Mass graves Experts available Anthropologists Odontologists AFDIL & the DNA repository Families get their loved ones back
  60. Global War on Terror Total Autopsies: 4,000+ (OIF/OEF combined) Staffing: OAFME Regionals Reserves
  61. Issues Retention of tissue and organs Requests for postmortem gamete harvesting Interference or Attempts to Change AFME’s death determination
  62. QUESTIONS????

    Major Catherine M. With, JD, LLM, LLM Legal Counsel The Armed Forces Institute of Pathology (AFIP) 6825 16th Street, NW Washington, DC 20306-6000 Phone: 202-782-2124/2120 Fax: 202-782-9376 Email: Website: