15th John K. Friesen Conference “Quality of Life at the End of Life: Decisions and Choices”...

15th John K. Friesen Conference

“Quality of Life at the End of Life: Decisions and Choices”

Gerontology Research Center

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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 & ChoicesBoard of Directors

Chairman,Legislative Advocacy

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VisionA 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.

MissionSupport, educate and advocate for

choice and care at the end of life.

Values Integrity Respect

Excellence Collaboration



Mission Statement

Why Me?

Strategies

SupportTo provide client information and support for choice in end-of-

life care, including hastened death, to mentally competent, terminally ill adults.

EducationTo 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.

AdvocacyTo 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 QuickTime™ and aTIFF (Uncompressed) decompressor


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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.



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 MeetingSan Diego, California - January 10, 2003.

The Right to a Compassionate Choice: Social - Legal - Legislative History

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.

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.

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 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.

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 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!


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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.

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

Advantages Social: Aging of baby boomers

A generation raised on Choice

Legal: SCOTUS has favored State’s rightsLikes to adopt the mood of the country

Legislative: New legislative championsBuilding of national partnerships - NASWAARP has opened the doorGrassroots strengthening



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