Transcript Friesen Conference - Simon Fraser University

15th John K. Friesen Conference
“Quality of Life at the End of Life:
Decisions and Choices”
The Right to
a Compassionate
Choice
at Life’s End
Gerontology Research Center
Simon Fraser University
Paul A. Spiers, Ph.D.
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Assistant Professor, Behavioral Neurosciences,
Boston University School of Medicine.
Visiting Scientist, Clinical Research Center,
Massachusetts Institute of Technology,
Massachusetts General Hospital.
Compassion & Choices
Board of Directors
Chairman,Legislative Advocacy
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Mission Statement
Why Me?
Vision
A society where people receive state-of-the-art care at the
end of life, and a full range of choices for dying
in
comfort, dignity and control.
Mission
Support, educate and advocate for
choice and care at the end of life.
Values
Integrity
Respect
Excellence
Collaboration
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Strategies
Support
To provide client information and support for choice in end-oflife care, including hastened death, to mentally competent,
terminally ill adults.
Education
To provide accurate information and perspective on end-of-life
issues to the general public, to health care and legal
professionals, to lawmakers and to the media.
Advocacy
To pass legislation and pursue litigation that improves end-oflife care and secures the right for all mentally competent adults
to choose a compassionate,
hastened
death when facing life’s end.
Hemlock
&
Socrates
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Sentenced to death in 399 B.C., Socrates is said to have
accepted this verdict with remarkable grace.
Rather than being forcibly poisoned, he asked for and
accepted a vial of Hemlock at a time of his choosing.
He drank it and died in the company of
his friends and disciples.
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The Hemlock Society: National Meeting
San Diego, California - January 10, 2003.
I believe that if and when a person arrives at that
point in human existence when death has become
a kinder alternative than hopeless pain
and
when a chronic dependency on narcotics begins to
require the loss of personal dignity, then the basic
human right to choose how and when to die should
be guaranteed by law
and respected by our
communities of faith.
- John Shelby Spong
Episcopal Bishop of Newark
The Right to a Compassionate Choice:
Social - Legal - Legislative History
Social Highlights
1906 First euthanasia bill, drafted in Ohio, fails to pass.
1935 First Euthanasia Society founded in London, England.
1938 Euthanasia Society of America founded by Rev.
Charles Potter in New York.
1954 Joseph Fletcher publishes Morals and Medicine,
predicting the coming controversy over the right to die.
1969 Elisabeth Kubler-Ross publishes On Death and Dying,
awakening widespread public discussion.
1974 The American Euthanasia Society in New York is
renamed the Society for the Right to Die.
The first American hospice to care for the dying opens
in New Haven, Connecticutt.
1978 Whose Life Is It Anyway?, a play about a young artist
who becomes quadriplegic, is staged in London and on
Broadway, raising disturbing questions about the right
to die. A film version appears in 1982.
Jean's Way is published in England by Derek Humphry,
describing how he helped his terminally ill wife to die.
1979 Artist Jo Roman, dying of cancer, commits suicide at a
gathering of friends that is later broadcast on public
television and reported by the New York Times.
1980 Dear Abby publishes a letter from a reader agonizing
over a dying loved one, generating 30,000 advance care
directive requests at the Society for the Right to Die.
Hemlock Society USA is founded in Santa Monica,
California, by Derek Humphry. Sally O’Connor is it’s first
member. Hemlock advocates legal change and distributes
how to die information. Hemlock's national membership will
grow to 50,000 within a decade.
Right to die societies also form the same year in Germany
and in Canada and the World Federation of Right to Die
Societies is formed in Oxford, England. It comprises 27
groups from 18 nations.
1985 Betty Rollin publishes Last Wish, an account of helping
her mother to die after a long losing battle with breast
cancer. The book becomes a bestseller.
1991 Nationwide Gallup poll finds 75 percent of Americans
approve of living wills.
Derek Humphry publishes Final Exit, a how-to book on selfdeliverance. Within 18 months the book sells 540,000
copies and is on bestseller lists. It is translated into twelve
other languages and sales exceed one million.
Choice in Dying is formed by the merger of Concern for
Dying and Society for the Right to Die. It becomes known for
defending patients' rights and promoting living wills, and has
150,000 members by 1996.
1993 Compassion in Dying is founded in Washington state
to counsel the terminally ill and provide information
about how to die without suffering and "with personal
assistance, if necessary, to intentionally hasten death."
CID files suit against state laws prohibiting assisted suicide.
1990-99 And beginning in 1990, the saga of Dr. Jack Kevorkian,
a retired pathologist, begins, focusing media attention on
assisting a hastened death. By 1999, when he is arrested and
sentenced to 25 years for filming the death of Thomas Youk,
Kevorkian has assisted 120 Americans to hasten their death.
In 1998, Hemlock forms Caring Friends to provide support
and guidance to patients who wish to hasten their death,
similar to the clinical emphasis of CID of Oregon.
The Canadian AIDS Society adopts a position statement in
1999 on Assisting in a Suicide and Voluntary Euthanasia.
2000 World Euthanasia Conference is held in Boston. The
disability opposition to assisted dying, Not Dead Yet, pickets
the meeting, even after it’s leader, Diane Coleman, was
invited to discuss her opposition on a panel with Paul Spiers
and others from the Right to Die movement.
2004 The Sea Inside & Million Dollar Baby bring the issue of
disability and assisted dying to the silver screen.
Hemlock Society USA is renamed End-of-Life Choices
and later that year merges with Compassion in Dying
to become Compassion & Choices (C&C). As the
largest organization in North America, C&C works for
legislative and legal change, while still providing
clinical services to counsel and provide information to
patients in the terminal stages of illness.
The Final Exit Network is formed by disenchanted
board members from Hemlock/Choices, who begin to
develop a network of volunteer guides across America
to help “hopelessly ill” people who request assistance
in finding death, even if they are not “terminal”.
2006 Twentieth World Euthanasia Conference
to be held in Toronto, Canada.
LEGAL HIGHLIGHTS
1967 The first living will is written by attorney Louis Kutner
and appears in the Indiana Law Journal.
l968
Doctors at Harvard Medical School redefine death to
include brain death, now globally the standard.
1970 The American Euthanasia Society in New York
distributes 60,000 living wills.
1973 American Hospital Association creates Patient Bill of
Rights, which includes informed consent and the right
to refuse treatment.
1976 The New Jersey Supreme Court allows Karen Ann
Quinlan's parents to disconnect the respirator keeping
her alive. She lives another eight years, but the case
becomes a legal benchmark.
1983 Elizabeth Bouvia, a quadriplegic born with cerebral
palsy, sues a California hospital to let her die by
withholding nutrition and fluids while receiving
comfort care. She loses, and files an appeal. Faye
Girsh, Ph.D. examines Bouvia for Competency.
1986 Elizabeth Bouvia is granted the right to refuse force
feeding by an appeals court. But she declines to take
advantage of the permission and remains alive.
1990 Cruzan v. Director, Missouri Dept. of Health SCOTUS gives it’s first aid in dying ruling. The
decision recognizes that competent adults have a
constitutionally protected liberty interest that includes
a right to refuse medical treatment but that this
interest does not extend to patients in a vegetative
state, unless there is clear and convincing evidence
that was their wish.
1993 Rodriguez v. British Columbia. Woman with ALS
petitions court for the right to be aided in dying, arguing
that current law is unconstitutional. BC Supreme Court
disagrees and refuses to hear case.
1994 Compassion in Dying v. Washington, a district court
finds that Washington State's law outlawing assisted
suicide violates the 14th Amendment. Judge Rothstein
writes, "The court does not believe that a distinction can
be drawn between refusing life-sustaining medical
treatment and physician-assisted suicide by an
uncoerced, mentally competent, terminally ill adult”.
In New York State, Quill et al v. Koppell is filed to
challenge the New York law prohibiting assisted
suicide. Quill loses, and files an appeal, Quill v. Vacco.
1995 Washington State's Compassion ruling is overturned by
the Ninth Circuit Court of Appeals, reinstating the anti
suicide law. Case is appealed to the Court en bank to
the full panel of eleven judges. The next year, the Court
reverses it’s finding, holding instead that
"a liberty interest exists in the choice of how and when
one dies, and that the provision of the Washington statute
banning assisted suicide, as applied to competent,
terminally ill adults who wish to hasten their deaths by
obtaining medication prescribed by their doctors, violates
the Due Process Clause.”
The ruling affects 9 western states but is stayed on appeal.
Oral arguments are heard in Quill v. Vacco contesting
the legality of New York's anti-suicide law before the
Second Circuit Court of Appeals.
1996 The Second Circuit Court of Appeals reverses Quill,
ruling that: "The New York statutes criminalizing
assisted suicide violate the Equal Protection
Clause because, to the extent that they prohibit a
physician from prescribing medications to be selfadministered by a mentally competent, terminally ill
person in the final stages of his terminal illness, they
are not
rationally related to any legitimate state
interest.”
The ruling affects laws in New York, Vermont and
Connecticut, but enforcement is stayed
pending an appeal to SCOTUS.
SCOTUS announced it will review both cases,
Washington v. Glucksberg and Quill v. Vacco.
Arguments were heard in tandem January 8th, 1997.
On June 26,1997, SCOTUS reverses the decisions of the 9th
and 2nd Circuit Courts, upholding as constitutional state
statutes barring assisted suicide.
However, the Court validated the concept of "double effect,"
openly acknowledging that death hastened by increased
palliative measures does not constitute prohibited conduct
so long as the intent is the relief of pain and suffering.
The majority opinion ended by stating that
"Throughout the nation, Americans are engaged in an
earnest and profound debate about the morality, legality
and practicality of physician-assisted suicide
Our holding permits this debate to continue,
as it should in a democratic society."
2001
USAG John Ashcroft invokes the
Controlled Substances Act
to undermine the Oregon Law
passed in 1994 but not enacted until 1997.
This extends federal police powers to the
practice of medicine in the states,
traditionally a state’s rights issue.
The gauntlet has been thrown down!
2003-04
USAG John Ashcroft asks the 9th Circuit Court of
Appeals to reverse the finding of a lower court judge that the
Oregon Death With Dignity Act does not contravene federal
powers. 129 dying people have used the law over the last five
years to obtain legal life-ending prescriptions.
Ashcroft loses and appeals for en bank review. He loses again
but in November of 2004 files an appeal with SCOTUS.
In 2005, the Court agrees to hear the case, now named
Gonzales v. Oregon. Briefs are due this fall and arguments
may be heard before 2006. Many groups, including APA, a
coalition of mental health professionals, C&C, and
AUTONOMY are filing briefs in opposition and the Catholic
Bishops, Right to Life groups and NDY are filing in support
2004-05 In Canada, the Crown prosecutes Evelyn Martens, a
volunteer from the Canadian Right-to-Die Society who was
present at the hastened deaths of two women in British
Columbia. End-of-Life Choices provides some support to the
remarkable fundraising efforts of the Canadian RTD Society.
But more of that case this evening.
In Florida, a case analogous to Cruzan focuses national
attention on the plight of Terry Schiavo, a woman who has
been in a persistent vegetative state for many years. SCOTUS
continues to refuse to hear appeals filed by her parents to
prevent her husband from stopping tube feeding. The tube is
removed and Florida enacts Terry’s Law, which is found to be
unconstitutional. Before the tube can again be removed,
Congress intervenes, assigning the case to the 11th Circuit
Court of Appeals in what many consider a clear violation of the
U.S. Constitution. Nutrition and hydration are finally stopped
and Terry dies in April of 2005. - ? Media
LEGISLATIVE HIGHLIGHTS
1967 A right-to-die bill is introduced by Dr. Walter W. Sackett in
Florida's legislature and is debated, but is unsuccessful.
1969 Voluntary euthanasia bill fails in the Idaho legislature
1976 California Natural Death Act is passed. The nation's first
aid in dying statute gives legal standing to living wills and
protects physicians for failing to treat an incurable illness at
the patient’s request. Ten more states follow California.
1990-91 Washington State Initiative 119 is the first state-wide
voter referendum on voluntary euthanasia and physicianassisted dying. Voters reject 119 by a vote of 54-46 percent.
Hemlock of Oregon introduces the Death With Dignity Act into
the Oregon legislature, but it fails to get out of committee.
1992 California Death with Dignity Act appears on the state
ballot as a proposition and is only narrowly defeated.
1994 Oregon voters approve Measure 16, a Death With
Dignity Act ballot initiative that would permit terminally ill
patients, under proper safeguards, to obtain a physician's
prescription to end life in a humane and dignified manner.
The vote is 51-49 percent in favor.
Oregon U.S. District Court issues a temporary restraining
order against Measure 16, following the order with an
injunction barring the state from putting the law into effect. It
is judged to violate the Equal Protection clause of the
Constitution.
This ruling is immediately appealed.
1997 Oregon House of Representatives votes to return
Measure 16 to the voters for repeal with Measure 51.
The Senate endorses 51 in what is the first attempt to
overturn the will of the voters since 1908.
In November, voters defeat Measure 51 by a 60-40% vote.
After a final failed court challenge, the 1994 law officially
takes effect on 27 October l997.
2000 A Citizens' Ballot Initiative in Maine to approve the
lawfulness of Physician- Assisted Dying is defeated
51-49% after opposition forces mount a media blitz.
2002 A Dutch law allowing both voluntary euthanasia and
physician-assisted dying takes effect.
Belgium passes a similar law.
2003 At a national membership meeting in San Diego, the
Hemlock Board votes to channel the organization’s resources
to becoming engaged in legislative advocacy. As of 2005,
Choices will have spent over a million dollars in this effort.
Hawaii
With the encouragement of Governor Benjamin Cayatano and
lobbyist support from CID and ODWD, as well as financial
support from Hemlock/Choices, the Hawaii House passes a
Death with Dignity Act modeled on the Oregon Law. The
Senate first approves the law, but on a second vote for
enactment the bill fails when a few senators change their vote
under pressure from opposition harassment and a right wing
media blitz.
An attempt to re-introduce the bill in 2004 is placed on hold
when the Governor elected is a conservative Republican
woman, who promises to veto the bill if it gets to her desk.
Vermont
2003 Death with Dignity Vermont is formed by Dick Walters and
members of the Vermont Hemlock Chapter. Sponsors are found
in the House of Representatives and a Death with Dignity Act is
introduced. Hearings are held but the bill is tabled so the
Legislature can conduct a study of the Oregon law over the
summer.
In 2004, the bill is re-introduced and hearings are again held but
the Speaker of the House is opposed and one of the major
obstacles is the opposition of what seems to be the disability
community. The bill does not get voted out of the Health
Committee despite promises and so will be resumed in the
second half of the biennium.
Statewide polls continue to show that 70% of voters support
passage. DWD Vermont vows to continue their legislative
initiative and to raise $150,000.00 for the coming effort.
Pennsylvania
2004 State chapter of C&C begins work on an Advance
Directive Registry to be administered by the Bureau of Motor
Vehicles with a check off on Driver’s Licenses. Partnerships are
forged with other Choice political groups and with the PMS
Pennsylvania Medical Society, which supports the AD Registry.
California
2005 AB_654 is introduced by representatives Berg & Levine.
C&C has a paid lobbyist in California, provides speakers and
witnesses for hearings, as well as mobilizing grassroots
support. The Compassionate Choices Act of 2005 passes the
House Judiciary and Appropriations Committees despite NDY
and Church opposition. And the latest news ….
held from Assembly vote - Gut & Amend pending Senate Bill
Obstacles
Social: Death was not dinner conversation, until now
Mistrust of Organized Medicine & HMOs
Legal: Reactionary USAG - Bush Judicial Appointments
Legislative: Disability Community misrepresented by NDY
Religious & Right Wing Opposition
Social:
Legal:
Legislative:
Advantages
Aging of baby boomers
A generation raised on Choice
SCOTUS has favored State’s rights
Likes to adopt the mood of the country
New legislative champions
Building of national partnerships - NASW
AARP has opened the door
Grassroots strengthening
Compassion & Choices
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