15th John K. Friesen
Conference
“Quality
of Life at the End of Life: Decisions and Choices”
Gerontology Research Center
Simon Fraser University
The
Right to
a
Compassionate Choice
at
Life’s End
Paul A. Spiers, Ph.D.
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
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
Mission
Statement
Why Me?
Strategies
Support
To provide client information
and support for choice in end-of-life 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-of-life care and secures the right
for all mentally competent adults to choose a compassionate,
hastened death when facing life’s end.
Hemlock
&
Socrates
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.
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
Hemlock Society: National Meeting
San Diego, California
- January 10, 2003.
The Right to a Compassionate
Choice:
Social - Legal - Legislative History
1906First 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.
Social
Highlights
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.
1980Dear 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 self-deliverance. 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.
1993Compassion 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.
2004The 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”.
2006Twentieth 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.
1994Compassion 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.
1995Washington 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.
1996The 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 self-administered 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 physician-assisted 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.
1994Oregon 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.
1997Oregon 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.
2003At 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
2004State 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
Advantages
Social: Aging of baby boomers
A generation raised on Choice
Legal:SCOTUS has favored State’s rights
Likes to adopt the mood of the country
Legislative:New legislative champions
Building of national partnerships - NASW
AARP has opened the door
Grassroots strengthening
Thank
You
Support
Educate
Advocate
Compassion & Choices