Disability Rights
Leadership Institute on Bioethics
April 25-26, 2014
Arlington, Virginia
NOT DEAD YET
Diane Coleman, JD, President/CEO
497 State Street
Rochester, New York 14608
(585) 697-1640
www.notdeadyet.org
Euthanasia Blues – Video
By Norm Kunc
http://www.youtube.com/watch?v=8Mwj8TUrbW
g
Pre-History & Formation
of Not Dead Yet (NDY)
Pre-History & Formation
of Not Dead Yet (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
Pre-History & Formation of NDY
Fighting for the right to home care and freedom
from nursing facilities in 1980’s,
“Give Me Liberty or Give Me Death” Cases:
 David Rivlin
 Kenneth Bergstedt
 Larry McAfee
ADAPT helped McAfee get out of a nursing
home and he changed his mind.
Pre-History &
Formation of NDY
A Name from a Movie: Monty
Python and the Holy Grail
Not Dead Yet founded April 27, 1996
Withholding & Withdrawal of Life
Sustaining Treatment
 Ensuring that health care decisions are
voluntary and based on informed
consent, not pressured
 Ensuring that surrogate decisions are
consistent with the person’s wishes and
their civil rights
 Opposing involuntary, unilateral
decisions by doctors, hospitals and
other providers (aka futility policies)
Surrogate decisions to withhold or
withdraw life-sustaining treatment
Surrogate Decision-Making
Withholding or Withdrawing LifeSustaining Treatment based on the
decision of:
 A surrogate chosen by individual
 A surrogate designated under a
statutory scheme or appointed by a
court
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treatment that can be withdrawn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
Pennsylvania case –
In re David Hockenberry
 Age 53, intellectual disability
 Resided in Edensburg Center most of his life
 Got aspiration pneumonia Dec. 2007
 Hospitalized, where doctors treated him with
mechanical ventilation for several weeks
 Parents turned to the courts to establish their
authority to refuse the ventilator and other
treatments – court denied parents’ request
 He improved and no longer needed ventilator
Pennsylvania Case - Hockenberry
From the Pennsylvania Supreme Court
decision:
“We hold that where, as here, life-preserving
treatment is at issue for an incompetent
person who is not suffering from an endstage condition or permanent
unconsciousness, and that person has no
health care agent, the Act mandates that the
care must be provided.” IN RE D.L.H., 2 A.3d
505 (2010).
Wisconsin Case  13-year-old boy with I/DD had pneumonia
 Easily treatable by antibiotics
 His long-term facility was providing the
antibiotics
 Doctor encouraged parents to transfer him to
UW hospital so that he could be taken off of
antibiotics, artificial nutrition and hydration.
 Boy then transferred to hospice care, where
he died after being administered morphine.
NDY partnering with ASAN on an
Amicus Brief in Wisconsin case
Disability Rights Wisconsin, the
designated protection and advocacy
agency for people with disabilities in
Wisconsin, has filed suit against the
University of Wisconsin Hospital and
Clinics, and six physicians including Dr.
Norman Fost, to prevent them from
denying life-sustaining medical treatment
to people with developmental disabilities.
NDRN - Devaluing People with Disabilities:
Medical Procedures that Violate Civil Rights
[T]here are times . . . where physicians
recommend and family or other surrogate
decision makers decide to not provide a needed
transplant, to withhold medical treatment
including hydration and nutrition of individuals
without a terminal condition, or to sterilize
people all on the basis of their disabilities.
Applied in these ways, medical decision making
and procedures are discriminatory and deny
basic constitutional rights to individuals with
disabilities . . ..
“Rush to Judgment” cases
Haleigh Poutre:
From “end of life” to “recovery”
 Massachusetts case of 11-year-old girl injured by






parental abuse
Withdrawal of a feeding tube sought by the state less
than two weeks post-injury
Abusive father went to court to keep feeding tube (to
avoid murder charges against himself)
State legal papers described her as almost “brain
dead”
The judge in the case ruled that Poutre should "pass
away with dignity” (2008)
The day after the ruling the news was released that
Poutre had clearly recovered some level of
consciousness
Poutre was transferred to rehabilitation
American Academy of Neurology
Practice Parameters re PVS
 Diagnostic standard for establishing a
persistent vegetative state. The vegetative
state . . . is defined as being persistent at 1
month. . . .
 PVS can be judged to be permanent 12
months after traumatic injury.
 PVS can be judged to be permanent for
nontraumatic injury after 3 months.
 The chance for recovery after these periods
is exceedingly low . . ..
Rush to Judgment –
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.
Rush to Judgment –
“Window of Opportunity”
“Reliable information about the character of an
injured persons future may be especially hard
to find at those times during the course of
treatment when there may be a ‘convenient’
window of opportunity to stop interventions
and allow the patient to die.”
Nelson, Frader, “Brain Trauma and Surrogate
Decisionmaking: Dogmas, Challenges and
Response”, J Clin Ethics, Winter 2004, 15(4):
264-76.
Rush to Judgment – Dr. J. Fins
“Once a patient progresses to minimal
consciousness, we can’t predict what’s
going to happen,” says Dr. Joseph J. Fins,
chief of medical ethics at Weill Cornell
Medical College and author of a coming book,
“Rights Come to Mind: Brain Injury, Ethics
and the Struggle for Consciousness.”. . . .
 A Drug That Wakes the Near Dead, NYTimes
Magazine, Jeneen Interlandi, Dec 1, 2011
Rush to Judgment
It is not uncommon for doctors to assume the worst
and advise family members to withdraw care early.
They do so in part because they see their duty as
helping loved ones face reality. But Fins argues that
this is a cop-out. “It’s glossing over all the unknowns
for the sake of a quicker, cleaner solution,” he says.
“It’s wrong to be so uniformly fatalistic so early on,
especially with all the data emerging about the
prospects for later-stage recovery.” (Emphasis added.)
A Drug That Wakes the Near Dead, NYTimes
Magazine, Jeneen Interlandi, Dec 1, 2011
Organ procurement &
transplantation policies
Two Issues: Organ Procurement &
Transplantation Network (OPTN)
 OPTN’s failure to protect individuals and
families from being contacted and even
pressured by organ procurement
organizations (OPOs) prior to a decision that
life support will be withdrawn
 OPTN's failure to establish protocols to
ensure that organs are not procured before a
conscious potential donor has received
appropriate psychological counseling and
support to live
Section 2.8 Requirements for Controlled
Donation after Circulatory Death (DCD)
Protocols
On Nov. 11-12, 2013, OPTN’s Board voted that,
“Prior to the OPO [organ procurement
organization] initiating any discussion with the
legal next-of-kin about organ donation for a
potential DCD donor, the OPO must confirm
that the legal next-of-kin has elected to
withdraw life sustaining medical treatment.”
[Legal next-of-kin is defined to include a patient
who is conscious and on a ventilator.]
U.S. Dept. of Health and Human
Services Should:
1. Take steps to ensure that OPTN
carries out its responsibility to monitor
and discipline organ procurement
organizations.
2. Support counseling for people who
acquire severe disabilities.
Discrimination in eligibility for organ
transplants: Amelia’s story
From “Brick Walls”, by Chrissy Rivera:
“I am going to try and tell you what happened
to us on January 10, 2012, in the conference
room in the Nephrology department at
Children’s Hospital of Philadelphia. . . . We
are in the year 2012 and my child still does
not have the right to live, the right to a
transplant, because she is developmentally
delayed.”
Discrimination in eligibility for organ
transplants: Amelia’s story
Following a national petition drive and negative
publicity, the hospital’s position changed.
"As an organization, we regret that we
communicated in a manner that did not
clearly reflect our policies or intent and
apologize for the Riveras' experience," said
Michael Apkon, senior vice president and
chief medical officer. He added: "While we
can unequivocally state that we do not
disqualify transplant patients on the basis of
intellectual ability... this event underscores
the importance of our responsibility to
effectively communicate with families.“ USA
Today, 2-15-12:
ASAN Policy Paper & Toolkit
Organ Transplantation and People with I/DD:
A Review of Research, Policy and Next
Steps
Organ Transplantation and People with
Disabilities: A Toolkit for State Advocates
www.autisticadvocacy.org
“Futility” and “Futile Care” policies
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)
3 Types of Futility Statutes
 Requires continued treatment pending
transfer by physician who judges treatment
futile or otherwise protects (AL, FL, ID, KS,
MD, MA, MN, NH, NY, OH, OK, WY )
 Requires continued treatment for a limited
time (two states, VA and TX)
 Allows or (vague) may allow physicians to act
on futility judgments and withdraw treatment,
non-specific about efforts that must be made
to transfer patient first (the other states)
Texas Futility Statute:
“If the patient or the person responsible for
the health care decisions of the patient is
requesting life-sustaining treatment that the
attending physician has decided and the
review process has affirmed is inappropriate
treatment,…The physician and the health
care facility are not obligated to provide lifesustaining treatment after the10th day after
the written decision…”
Tex. Code Ann. § 166.046 (Vernon 2004).
Oklahoma has legislation entitled the
"Nondiscrimination in Treatment Act”
A health care provider shall not deny to a patient a lifepreserving health care service the provider provides
to other patients, the provision of which is directed by
the patient or a person authorized to make health
care decisions for the patient:
 1. On the basis of a view that treats extending the life
of an elderly, disabled, or terminally ill individual as of
lower value than extending the life of an individual
who is younger, non-disabled, or not terminally ill; or
 2. On the basis of disagreement with how the patient
or person authorized to make health care decisions
for the patient values the tradeoff between extending
the length of the patient's life and the risk of disability.
NDY Texas Proposal for Ethics
Committee Accountability
 Composition: At least one quarter non-
hospital staff
 Must include members of both disability and
aging advocacy organizations
 An independent oversight committee to
adjudicate when individuals or families are in
conflict with decision of ethics committee
 Slogan: “End the UNethics Committees”
Physician/Medical Orders on LifeSustaining Treatment (POLST/MOLST)
POLST: Having the POLST
Conversation (Video)
An example of a POLST conversation that
conveys bias against living with disabilities:
UC Davis Center for Healthy Aging –
Physician Orders for Life-Sustaining Treatment
(POLST):Honoring Patients’ Wishes for
Treatment
http://www.ucsd.tv/searchdetails.aspx?showID=18360&subject=health
Concerns About
POLST/MOLST
 Using POLST With Non-Terminal People
 Bias Against Life-Sustaining Technologies
 POLST Form May Not Reflect Person’s
Wishes, but the doctor’s
 Lack of Independent Research on POLST
 Medical Professionals Not Held Accountable
 The Risk of Over-Interpretation of POLST
Orders
http://www.notdeadyet.org/full-written-publiccomment-disability-related-concerns-aboutpolst
POLST is often overused
Example: In Maryland, facilities have a
duty to complete the MOLST form for
residents of nursing homes, assisted
living programs, kidney dialysis centers,
home health agencies and
hospices. Hospitals must complete the
form for patients who will be transferring
to such facilities or to another hospital.
Does POLST Require Individual’s or
Authorized Surrogate’s Signature?
 States that require patient/surrogate
signature: CA, CO, GA, HI, ID, IL, IN, IA, LA,
MT, NC, NV, NJ, PA, RI, UT, WA and WV
 States that don’t: MD, MN, NY, OR, TN and
VT
Source: ABA Commission on Law and Aging,
POLST Program Legislative Comparison
(2014)
Second Thoughts CT Negotiated a
POLST We Can Live With
 For person at end stage of serious illness
 Advisory group includes disability advocates
 Signature of patient or surrogate required
 Discussion involves methods for presenting
choices for “end-of-life” care without steering
patients toward particular options
 Discussion includes fully informing patients
about both the benefits and risks of entering
an immediately effective medical order for life
sustaining treatment
NOT DEAD YET: CENTRAL
THEMES & MESSAGES
 Nothing About Us Without Us!!!!!
 Financial constraints pose a threat in the
medical system.
 The medical system resists accountability.
 Bias against people with disabilities
permeates society and medical providers.
 “Fear and loathing” of disability drives proeuthanasia advocacy.