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)

New York Association on Independent LivingNew York Association on Independent LivingOctober 5 & 6, 2010October 5 & 6, 2010

NOT DEAD YET

Diane Coleman, JD, President

497 State Street

Rochester, New York 14608

(585) 697-1640

www.notdeadyet.org

Pre-History & Formation of NDYPre-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


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.

Brody ApologyBrody 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.

Brody ApologyBrody 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.

Kevorkian (1990’s)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.


• 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

PRIMARY ISSUES PRIMARY ISSUES NOT DEAD YET ADDRESSESNOT 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

STRATEGIES & TACTICSSTRATEGIES & TACTICS

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

Examples of NDY Direct ActionsExamples 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

NDY’S ROLE WITHIN THE NDY’S ROLE WITHIN THE DISABILITY COMMUNITYDISABILITY 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

National Disability Groups OpposedNational Disability Groups OpposedTo Legalization of Assisted SuicideTo 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

What Does Disability Have to Do What Does Disability Have to Do With Assisted Suicide? 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.

What Does Disability Have to Do What Does Disability Have to Do With Assisted Suicide?With Assisted Suicide?

PEOPLE WITHTERMINAL CONDITIONS

PEOPLE WITH DISABILITIES

““REASONS” FOR REASONS” FOR ASSISTED SUICIDEASSISTED SUICIDE

OREGON REPORTING FORM LANGUAGE 1998-2008

HIS OR HER TERMINAL CONDITION REPRESENTING A STEADY LOSS OF AUTONOMY.

89.9 %

THE DECREASING ABILITY TO PARTICIPATE IN ACTIVITIES THAT MADE LIFE ENJOYABLE.

87.4 %

A LOSS OF DIGNITY. 83.8 % THE LOSS OF CONTROL OF BODILY FUNCTIONS, SUCH AS INCONTINENCE AND VOMITING.

58.7 %

THE PHYSICAL OR EMOTIONAL BURDEN ON FAMILY, FRIENDS OR CAREGIVERS.

38.3 %

INADEQUATE PAIN CONTOL AT THE END OF LIFE. 23.9 % THE FINANCIAL COST OF TREATING OR PROLONGING HIS OR HER TERMINAL CONDITION.

2.8 %

FROM THE NOT DEAD YET AMICUS BRIEF IN FROM THE NOT DEAD YET AMICUS BRIEF IN THE MONTANA CASETHE MONTANA CASE by Steve Gold 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.


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.”


“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.”

The Proponents of LegalizedThe Proponents of LegalizedAssisted SuicideAssisted Suicide

• Key Groups: Compassion & Choices, Final Exit Network

• Policy Agenda of Broad Eligibility for Assisted Suicide

• Incremental Strategy – start with people diagnosed “terminal”

Why Not a Statute With Why Not a Statute With Safeguards?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

Margaret Dore, Esq. Brief on Self-Margaret Dore, Esq. Brief on Self-Administration of the Lethal DoseAdministration 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.

Margaret Dore, Esq. Brief on Self-Margaret Dore, Esq. Brief on Self-Administration of the Lethal DoseAdministration 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….”

MT & CT CasesMT & 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

Non-Voluntary & InvoluntaryNon-Voluntary & InvoluntaryPassive EuthanasiaPassive 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

Treatment Withholding:Treatment Withholding:Surrogate Decisions – Landmark CaseSurrogate 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

Cautionary Notes: Cautionary Notes: Surrogate DecisionsSurrogate 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.”

Cautionary Notes: CruzanCautionary 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.”

Cautionary Notes: CruzanCautionary 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].)

Cautionary Notes: Cautionary Notes: Food & Water by TubeFood & 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.]

Many state laws turn on PVS but Many state laws turn on PVS but studies show misdiagnosis of PVSstudies 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.

Medical Discrimination Against Medical Discrimination Against Children With DisabilitiesChildren 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).

NY Family Health Care NY Family Health Care Decisions LawDecisions 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. )


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


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


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


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. )

What is futility?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)

Futility Policies Futility Policies Recommended by AMARecommended by AMA

The Journal of the American Medical Association, Volume 281(10).March 10, 1999.937-941

Medical Futility in End-of-Life Care: Report of the Council on Ethical and Judicial Affairs

JAMA: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.”

JAMAJAMA

Types of Futility StatutesTypes 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

NY Family Health Care NY Family Health Care Decisions Law 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. )

What Can NYS What Can NYS Disability Rights Advocates Do?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

CENTRAL THEMES & CENTRAL THEMES & MESSAGESMESSAGES

• 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

Things people with disabilities know that Things people with disabilities know that others spent millions to research about others spent millions to research about

individuals and familiesindividuals 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

Things people with disabilities know that others Things people with disabilities know that others spent millions to research about spent millions to research about

health care providershealth 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

Things that Right and Left Things that Right and Left political interests still don’t getpolitical 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

Documents

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)