New York Association on Independent Living October 5 & 6, 2010

1. New York Association on Independent Living October 5 & 6, 2010 NOT DEAD YET Diane Coleman, JD, President 497 State Street Rochester, New York 14608 (585) 697-1640 www.notdeadyet.org

2. Pre-History & Formation of NDY Elizabeth Bouvia – Early “Right to Die” Case • Age 26, Cerebral Palsy • Setbacks: Miscarriage, Marriage Breakup • Vocational Rehab Agency took back van • Forced to quit masters program • Sought medical help for starvation with morphine • Court equated her with terminally ill person

3. Pre-History & Formation of NDY Fighting for the right to home care and freedom from nursing homes: “Give Me Liberty or Give Me Death” Cases in 1980’s: • David Rivlin • Kenneth Bergstedt • Larry McAfee ADAPT helped McAfee get out of nursing home and he changed his mind.

4. Brody Apology “This is the key lesson that disabilities advocates are trying to teach the rest of us. If we look at a case one way, it seems that the problem is the person’s physical disability. If we shift our view, we realize that the problem is not the disability, but rather the refusal of society to make reasonable and not terribly expensive accommodations to it.

5. Brody Apology ”There’s every reason to believe in hindsight that David Rivlin died unnecessarily, and that we who claimed to care about his ‘rights’ should have been demanding that services be made available for him rather than that he be allowed to die. As one who argued the wrong thing back then, I apologize for my shortsightedness.” http://www.lansingcitypulse.com/041006/features/health.aspHEALTH :: OCTOBER 06, 2004 A bioethicist offers an apology Howard Brody, M.D.

6. Kevorkian (1990’s) Among the findings reported by Detroit Free Press in "The Suicide Machine": · 60 percent were not terminally ill. · 17 of the first 47 could have lived indefinitely. · 13 of the 47 had no pain complaints. · 32 of the 47 were women.

7. Pre-History & Formation of NDY • Schoolhouse Summit: street action group needed (like ADAPT) • Jan – Apr 1996 *Two assisted suicide cases > US Sup Ct *Two Kevorkian acquittals re disabled women *A name for the group: Not Dead Yet

8. PRIMARY ISSUES NOT DEAD YET ADDRESSES • ASSISTED SUICIDE – OPPOSING LEGALIZATION • TREATMENT WITHHOLDING • VOLUNTARY/INFORMED VS. PRESSURED • INVOLUNTARY - BY A SURROGATE • INVOLUNTARY – BY A HEALTH PROVIDER • HOMICIDE CASES – DEMAND EQUAL PROTECTION

9. STRATEGIES & TACTICS • VOICING THE DISABILITY PERSPECTIVE THROUGH: • ARTICLES, BLOG • CONFERENCE KEYNOTES & WORKSHOPS • COURT BRIEFS • LEGISLATIVE EFFORTS • REGULATIONS & POLICY WORK • NON-VIOLENT DIRECT ACTION/PROTEST

10. Examples of NDY Direct Actions • First Protest: Kevorkian’s cottage • US Supreme Court Rallies • Hemlock Society Conference • Princeton & Peter Singer • Kevorkian’s Last Trial • World Federation of Right to Die Societies • Bioethics Conference Protests

11. NDY’S ROLE WITHIN THE DISABILITY COMMUNITY • EDUCATION ABOUT THE ISSUES • TECHNICAL ASSISTANCE TO LOCAL ADVOCATES WHEN CASES CROP UP • FRAMING AND ARTICULATING A DISABILITY RIGHTS PERSPECTIVE • BUILDING SUPPORT • ORGANIZING A DISABILITY RESPONSE

12. National Disability Groups OpposedTo Legalization of Assisted Suicide • American Disabled for Attendant Programs Today (ADAPT) • Assn. of Programs for Rural Independent Living (APRIL) • Disability Rights Education and Defense Fund (DREDF) • Justice For All • National Council on Disability • National Council on Independent Living • National Spinal Cord Injury Association • Not Dead Yet • TASH • World Association of Persons with Disabilities • World Institute on Disability

13. What Does Disability Have to Do With Assisted Suicide? The disability experience is that people who are labeled "terminal," based on a medical prediction that they will die within six months, are — or almost inevitably will become — disabled.

14. What Does Disability Have to Do With Assisted Suicide? PEOPLE WITH TERMINAL CONDITIONS PEOPLEWITH DISABILITIES

15. “REASONS” FOR ASSISTED SUICIDE

16. FROM THE NOT DEAD YET AMICUS BRIEF IN THE MONTANA CASE by Steve Gold “Assisted suicide advocates use the term ‘death with dignity’ to justify assisted suicide, but when asked what ‘indignities’ concern them, they invariably describe the need for assistance in daily activities like bathing and toileting, and other disability realities, as reasons everyone should accept for setting up a societal double standard for who gets suicide assistance while everyone else gets suicide prevention.

17. FROM THE NOT DEAD YET AMICUS BRIEF IN THE MONTANA CASE by Steve Gold Like derogatory racist and sexist language, the equation of disability and indignity is anti-disability, or ‘able-ist,’ thinking. Not surprisingly, these negative assumptions are sometimes shared by people whose disability status has not been life-long, but has been acquired by traumatic accidents and chronic diseases. However, people with disabilities rate our own quality of life as high or higher than the general public rates their own.”

18. FROM THE NOT DEAD YET AMICUS BRIEF IN THE MONTANA CASE by Steve Gold “Providing assisted suicide only for people with disabilities and denying them suicide prevention services, based on a doctor’s prediction of terminal status or other justification, violates the ADA because the presence or absence of disability determines whether state and local governments: • enforce laws requiring health professionals to protect individuals who pose a danger to themselves; • respond to expressions of suicidal intent in people with disabilities with the application of lethal measures that are never applied to people without disabilities; • investigate and enforce abuse and neglect and homicide statutes in cases reported as assisted suicides.”

19. The Proponents of LegalizedAssisted Suicide • Key Groups: Compassion & Choices, Final Exit Network • Policy Agenda of Broad Eligibility for Assisted Suicide • Incremental Strategy – start with people diagnosed “terminal”

20. Why Not a Statute With Safeguards? Oregon & Washington Examples: • Terminal predictions unreliable • Disclosure of “feasible” alternatives, no requirement to provide alternatives/services • No requirement for evaluation or counseling • “Good faith” claim >> no liability • No standards when drug ingested • “Self-administration” of drug not actually required

21. Margaret Dore, Esq. Brief on Self-Administration of the Lethal Dose • “Recipe for elder abuse” • No requirements at time lethal dose administered (e.g. no request required) • “Oregon’s law implies that patients administer the lethal dose to themselves. The law does not, however, require this.

22. Margaret Dore, Esq. Brief on Self-Administration of the Lethal Dose “…Oregon’s law instead refers to patient administration as the ‘act of ingesting medication to end his or her life. “… someone else putting the lethal dose in the patient’s mouth qualifies as proper administration; someone else putting the lethal dose in a feeding tube or IV nutrition bag would also qualify….”

23. MT & CT Cases Cases brought by pro-assisted suicide advocacy group, Compassion & Choices, sought court rulings legalizing assisted suicide. MT ruled that assisted suicide is not a constitutional right in MT, but that person’s consent could be a defense to criminal charges against a doctor who assists suicide. CT ruled that assisted suicide is not exempt from criminal prosecution unless legislature acts. MT & CT Next Stop >> State Legislatures

24. Non-Voluntary & InvoluntaryPassive Euthanasia Withholding or Withdrawing Life-Sustaining Treatment based on – 1. Surrogate decision: • Surrogate chosen by individual = OK • Surrogate under statutory scheme = ?? 2. Physician/hospital decision without consent by person or surrogate: Futility

25. Treatment Withholding:Surrogate Decisions – Landmark Case U.S. Supreme Court 1990 Cruzan decision – • Surrogate may decide to withdraw treatment • Food & water by tube = medical treatment that can be withdrawn • State law determines details

26. Cautionary Notes: Surrogate Decisions U.S. Supreme Court, 1990 Cruzan ruling: “Close family members may have a strong feeling – a feeling not at all ignoble or unworthy, but not entirely disinterested, either – that they do not wish to witness the continuation of the life of a loved one which they regard as hopeless, meaningless and even degrading.”

27. Cautionary Notes: Cruzan “ But there is no automatic assurance that the view of close family members will necessarily be the same as the patient’s would have been had she been confronted with the prospect of her situation while competent.”

28. Cautionary Notes: Cruzan “ [t]he differences between the choice made by a competent person to refuse medical treatment, and the choice made for an incompetent person by someone else to refuse medical treatment, are so obviously different that the State is warranted in establishing rigorous procedures for the latter class of cases which do not apply to the former class.” (Cruzan, supra, at p. 287, fn. 12 [ 110 S. Ct. at p. 2856].)

29. Cautionary Notes: Food & Water by Tube • In a l983 article, reflecting on the possible outcome of this food and water debate, Daniel Callahan, then director of the Hastings Center, wrote "...a denial of nutrition, may, in the long run, become the only effective way to make certain that a large number of biologically tenacious patients actually die." • . . . "Given the increasingly large pool of superannuated, chronically ill, physically marginal elderly, it could well become the nontreatment of choice." [Daniel Callahan, "On Feeding the Dying," Hastings Center Report, October 1983, p. 22.]

30. Many state laws turn on PVS but studies show misdiagnosis of PVS • Andrews, Murphy, Munday and Littlewood, Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit, British Medical Journal 1996;313:13-16 (6 July) • Outcome Measure: Patients who showed an ability to communicate consistently using eye pointing or a touch sensitive single switch buzzer. Results: Of the 40 patients referred as being in the vegetative state, 17 (43%) were considered as having been misdiagnosed; seven of these had been presumed to be vegetative for longer than one year, including three for over four years.

31. Medical Discrimination Against Children With Disabilities To accept a projected negative quality of life … based on the difficulties society will cause …, rather than tackling the difficulties themselves, is unacceptable. The Commission rejects the view that an acceptable answer to discrimination and prejudice is to assure the ‘right to die’ to those against whom the discrimination and prejudice exists.[i] [i] U.S. Civil Rights Commission, Medical Discrimination Against Children With Disabilities, page 33, (1989).

32. NY Family Health Care Decisions Law • Effective June 1, 2010 • Applies to people in hospital or nursing facility who don’t have a health care proxy • Allows family or friends to make health care decisions without court decision • Health care decisions includes removing life sustaining treatment, food & fluids by tube (from an article By: Jeffrey G. Abrandt, Esq. )

33. NY Family Health Care Decisions Law The surrogates are listed in order of priority: 1. Court appointed guardian for an already determined incapacitated adult 2. Spouse or domestic partner 3. Child over eighteen years old 4. Parent 5. Sibling over eighteen years old 6. Close friend or relative (other than spouse, adult child, parent, brother or sister) who has maintained such regular contact with the patient as to be familiar with the patient's activities, health, and religious or moral belief, and who presents a signed statement to that effect to the attending physician

34. NY Family Health Care Decisions Law The new law requires that the surrogate can make this decision only if -- • the treatment would be an extraordinary burden to the patient • and the patient has an irreversible or incurable condition, as determined by attending physician with the independent concurrence of another physician

35. NY Family Health Care Decisions Law And an attending physician + another physician determines: (A) patient had illness/injury expected to cause death within six months, whether or not treatment is provided; or (B) patient is permanently unconscious, or (C) the provision of treatment would involve such pain suffering or other burden that it would reasonably be deemed inhumane or extraordinarily burdensome under the circumstances

36. NY Family Health Care Decisions Law A person with a relationship to the patient and any member of the hospital Ethics Review Committee who has objections • to the incapacity determination, the choice of surrogate, or • to the surrogate decisions …may go before a court for a further review in an expedited court proceeding. (from an article By: Jeffrey G. Abrandt, Esq. )

37. What is futility? • State statute or medical provider policy • “Doctor knows best” in treatment withholding • Overrules patient decision, family decision • Denies life-sustaining treatment based on -medical predictions (often unreliable) -quality of life judgments (often biased)

38. Futility Policies Recommended by AMA The Journal of the American Medical Association, Volume 281(10).March 10, 1999.937-941Medical Futility in End-of-Life Care: Report of the Council on Ethical and Judicial Affairs

39. JAMA: “When medical cases involve futility judgments, case-by-caseevaluations using a fair process approach may well be the best available option;it acknowledges both the impossibility of attaining objective assurance and thenecessity of proceeding fairly.”

40. JAMA

41. Types of Futility Statutes • Requires continued treatment pending transfer by physician who judges treatment futile (11 states, Including NY) • Requires continued treatment for a limited time (two states, VA and TX) • Allows physicians to act on futility judgments, but non-specific about efforts that must be made to transfer patient first

42. NY Family Health Care Decisions Law For patients with no surrogate, the Family Health Care Decisions Act requires the medical facility to make health care decisions under the same guidelines as required for surrogates. The law forbids making medical decisions based on financial considerations. (from an article By: Jeffrey G. Abrandt, Esq. )

43. What Can NYS Disability Rights Advocates Do? • Educate local advocates • Get to know local medical policy makers, “end-of-life” health care groups • Join local committees, Ethics Committees • Monitor cases involving people with disabilities under NY Family Health Care Decisions Act and Palliative Care Information Act

44. CENTRAL THEMES & MESSAGES • NOTHING ABOUT US WITHOUT US!!!!! • FINANCIAL CONSTRAINTS POSE A THREAT IN THE MEDICAL SYSTEM • THE MEDICAL SYSTEM RESISTS ACCOUNTABILITY FOR DECISIONS,ERRORS • BIAS AGAINST PEOPLE WITH DISABILITIES PERMEATES SOCIETY AND MEDICAL PROVIDERS • FEAR OF DISABILITY DRIVES PRO-EUTHANASIA ADVOCACY

45. Things people with disabilities know that others spent millions to research about individuals and families • People change their minds about what is acceptable as disease/condition progresses • Family members don’t consistently or correctly predict individual choices • Family members have conflicts of interest and project personal disappointments onto their family member • Lack of adequate home and community-based services is a big issue

46. Things people with disabilities know that others spent millions to research about health care providers • Healthcare providers say things to influence/pressure individuals and families to withhold treatment • Healthcare providers push public policies to avoid accountability • Healthcare providers are not consistently accurate in predicting terminality • Healthcare providers devalue people with disabilities and serious health impairments

47. Things that Right and Left political interests still don’t get • Disability concerns are not “side issues” that only affect people with disabilities • People with disabilities are warning all people about a broken health care system that will someday impact them • People with disabilities are not willing to die to preserve the profits and salaries of health care providers or the insurance industry • Many non-disabled people seem to be so petrified about acquiring significant disabilities that they can’t see reality objectively