Assisted Suicide & Death with Dignity: Past, Present & Future - Part I

Introduction

This report discusses assisted suicide (1) and euthanasia. (2) The topics of advance directives, tube-feeding and other issues generally addressed by the ITF are not covered.

The Netherlands, Belgium and Oregon are the only jurisdictions in the world where laws specifically permit euthanasia or assisted suicide. The Netherlands and Belgium permit both euthanasia and assisted suicide.(3) Oregon permits assisted suicide.(4)

When the Oregon law passed in 1994, assisted-suicide activists thought other states would quickly fall in line. Through the end of 2004, rather than sweeping the field as they expected, the assisted-suicide movement has been stopped cold – in the courts, at the ballot box and in legislatures.

Each time, they had predicted victory. Every year, they had sought and received financial backing to put them over the top so that another state could join Oregon in permitting assisted suicide. Now, after ten years and millions of dollars in expenditures, they have only a string of losses to show for their efforts.

They desperately need to produce. If they triumph in just one more state, they will create the momentum they need. If they win in any place, by any route, they will be re-energized. And they will seek and obtain additional support from foundations and major donors.

Their losses have led to massive changes in the "right-to-die" movement. Some groups have ceased operation. Others have merged. Some high profile spokespersons have been dismissed from their positions. Others have left the movement altogether or have formed splinter groups.

Yet, it would be dangerous to assume that this spells the end to attempts to push Oregon-type laws in other states. Assisted-suicide advocates have learned from their past mistakes. Already, they have set the groundwork for a massive effort in 2005 that includes legislative proposals in several carefully selected states. If they win in any state, by any route, by whatever means, they believe that will have the momentum they need to move forward with their plan of euthanasia and assisted suicide for anyone for any reason.

Right-to-Die Organizations

A spate of spin-offs, "mergers," and closures took place within the right-to-die movement in 2003 and 2004. Old groups took on new names – names that portray a soft, gentle image. Along with this, the organizations became involved in some activities that were acceptable or, at least, not objectionable. This cosmetic surgery, however, does not mean that the underlying goals of such groups have changed.

The sixty-six year history of one right-to-die group illustrates this point.

Oldest U.S. euthanasia organization calls it quits

Euthanasia Society of America

At the end of 2004, the organization known as Partnership for Caring ceased operation. Its demise was announced in an October 8 message ending with "RIP."

In that message, right-to-die activists learned that the organization "once known as Choice in Dying, Society for the Right to Die, and other now-forgotten names" was closing down.(5) Since 1938, this group had been influential within the broader right-to-die movement.

Over the years, many people who worked with the organization were unaware of its origins. Incorporated in 1938 as the Euthanasia Society of America, one of its stated corporate purposes was:

To disseminate information to the public by all lawful means of the nature, purpose, and need of euthanasia, and to foster its general adoption. By the term "euthanasia" is to be understood the lawful termination of human life by painless means for the purpose of avoiding unnecessary suffering and under adequate safeguards.(6)

On January 17, 1938, The New York Times reported the formation of a national euthanasia organization, which became known as the Euthanasia Society of America and, within a year, that group was ready to offer a proposal to legalize "the termination of human life by painless means for the purpose of avoiding unnecessary suffering." Initially, the measure was to be limited to "voluntary" euthanasia, but the society "hoped eventually to legalize the putting to death of non-volunteers beyond the help of medical science."(7) Dr. Foster Kennedy, the Society’s new president urged "legalizing of euthanasia primarily in cases of born defectives who are doomed to remain defective, rather than for normal persons who have become miserable through incurable illness." (8)

Spin off: Euthanasia Educational Council

The Euthanasia Society made little headway until 1967 when two crucial events took place. The first was the establishment of the Euthanasia Educational Fund soon renamed the Euthanasia Educational Council (EEC) – as a tax-exempt fund-raising branch of the Euthanasia Society. The second was the development of a new document to help "promote discussion of euthanasia." (9) That document was called the "Living Will." (10)

The organization, in publications listing its achievements and activities over the years, noted that the first legislative proposal to make the Living Will a legally binding document was introduced in Florida by Dr. Walter Sackett, a Florida legislator.(11) The 1968 proposal – which Sackett sponsored and reintroduced over a period of five years –provided for removal of care from severely retarded persons in state hospitals. After the San Francisco Examiner reported Sackett’s estimate that, with the bill’s passage, "$5 billion could be saved over the next half century if the state’s mongoloids were permitted merely to succumb to pneumonia,"(12) the National Association for Retarded Children passed a resolution vowing to oppose it and any similar legislation.(13)

Even before the resounding rejection of Sackett’s proposal, the euthanasia organization advised studious avoidance of inflammatory rhetoric. References to future goals were limited to conferences and publications directed at those who already agreed with the concept of euthanasia. At a conference of the Euthanasia Educational Council, members were told of the need to "walk before we can run." Other plans were to be delayed "until the general public accepts the fact that man has an inalienable right to die."(14) The importance of words and the need to shed a radical image became paramount.

New names: Society for the Right to Die and Concern for Dying

Sensitivity to the word "euthanasia" led to major name changes in the mid 1970s. In 1975, the Euthanasia Society of America changed its name to the Society for the Right to Die and, in 1979, the Euthanasia Educational Council became known as Concern for Dying. After infighting broke out between them,(15) they severed their close relationship in 1979.

While both organizations were rapidly becoming viewed as mainstream, members’ conferences and communications continued to promote assisted suicide and euthanasia. Soon after its name change, Concern for Dying provided a platform for the then-little-known Derek Humphry. It invited him to speak at its San Francisco Conference to discuss his newly published book, Jean’s Way, that chronicled how his first wife died after he obtained a lethal dose of drugs and gave them to her.(16) It also featured Berit Hedeby, the head of Sweden’s right-to-die organization who had participated in the lethal overdose/lethal injection death of a middle-aged man who had multiple sclerosis.(17)

In 1989, the New England Journal of Medicine published a report that had been formulated at a meeting funded by and held under the auspices of the Society for the Right to Die.(18) The report concluded that it was morally acceptable for doctors to give patients suicide information and the necessary prescriptions for the deadly dose. The article made front-page news across the country and catapulted advocacy of assisted suicide into the realm of respectable debate. PBS’s MacNeil/Lehrer News Hour called it the "strongest public endorsement of doctor-assisted suicide ever published."(19) Twelve of the thirteen physicians who attended the meeting and formulated the report were listed as its authors. The thirteenth physician in attendance was Dr. Pieter Admiraal, a well-known proponent and practitioner of euthanasia in the Netherlands.(20) (At a conference three years earlier, Admiraal had told participants how enriching it was for children to be present as he ends their parents lives. "We invite them to be there the moment I give the needle injection," he said.(21))

When the report was published, Sidney D. Rosoff was chairman of the board of directors of the Society for the Right to Die. Several years later, he became president of the Hemlock Society.

Reunification: Choice in Dying

In 1990, the Society for the Right to Die and Concern for Dying announced that they were going to merge.(22) The following year, the formal name of the recombined organizations became the "National Council for Death and Dying."(23) Then, just six months later, its name was formally changed to "Choice in Dying."

In a letter sent to supporters, the heads of Concern for Dying and the Society for the Right to Die acknowledged that the merger reflected a reuniting of the two organizations which had split in the 1970s.(24) They characterized the move as a way to strengthen their mission – "advocating individual choice in the way we die," and wrote that the reunification would result in a "stronger, leaner, and more effective enterprise than either organization would have been alone." (25) Fenella Rouse who became the executive director of Choice in Dying announced, "Choice in Dying will carry on the educational and advocacy work of its predecessors, but with a more unified voice." (26)

The newly named group took on the mantle of an organization aimed at promoting better pain management and control over the end of life. In public statements, its officials depicted assisted suicide as pain control and child euthanasia as an issue open for debate.

For example, a 1994 CNN debate between Karen Kaplan, director of Choice in Dying and Wesley J. Smith, representing the International Task Force, centered around the passage of Oregon’s assisted suicide law (which permits doctors to prescribe a lethal drug overdose for the purpose of suicide) and the Latimer case that had just ended in Canada. Robert Latimer had been found guilty of second-degree murder for placing his 12-year-old, disabled daughter in the cab of his truck and gassing her to death by hooking tubes and pipes to the truck’s exhaust system.

During the debate, Kaplan described the Oregon law as a simple pain control measure. The law, she said, "really does limit physicians’ intervention" and is only about "giving medication that will control pain at the end of life even though it may hasten death." (27)

When the program moderator asked Kaplan if parents should be able to exercise control over their children’s lives as Robert Latimer had done, Kaplan replied, "Well, that’s an important public policy issue that we do need to debate." (28)

In 1996, Samuel Klagsbrun MD, who was a plaintiff in a New York case challenging laws prohibiting assisted suicide,(29) appeared on national television as a spokesperson for Choice in Dying. He said that if there were no laws against assisted suicide, doctors would be able to deal with patients’ difficulties and pain "in a much less encumbered fashion."(30) He explained that there would be a "partnership" between doctors and patients, permitting honest discussion and the best symptom management.(31)

Misleading statements, such as those above, permitted Choice in Dying to paint itself in the soft hues of a patients’ rights organization. Over the years it succeeded in obtaining a great deal of funding.(32)

The organization moved its main office from New York to Washington DC and, once again, it changed its name.

A kinder, gentler image: Partnership for Caring

As 1999 drew to a close, Karen Kaplan, Choice in Dying’s director, announced that, along with the beginning of a New Year, there was cause to celebrate the "birth" of a yet another entity (although, in tax filings,(33) membership, and staff, it was apparent that the "new" group was a continuation of the 1930’s organization). Kaplan wrote:

"[T]he celebration continues for all of us as Choice in Dying gives birth to a vibrant, new movement in the end-of-life arena – Partnership for Caring: America’s Voices for the Dying. And as you renew your Choice in Dying membership for the new year, you will find that to show our gratitude and thanks for your ongoing interest and support, we have enrolled you – free – for one year as a Partner in this new endeavor."(34)

According to Kaplan, Choice in Dying was "transitioning" to Partnership for Caring or, as stated on the group’s web site, "evolving" into the new organization. The web site noted that its program office would remain in New York and its national office would be located in Washington DC. In a telephone interview in July 2000, Kaplan said that Choice in Dying had been dissolved in March and all assets transferred to the new group.(35) However, no such dissolution took place.(36) According to the New York Department of Corporations, Choice in Dying merged with Partnership for Caring on March 14, 2001.(37) Thus, as in the past, the organization had taken on a new name while retaining the same administration, programs, membership, etc.

Another name variation also began in late 2000 when Partnership for Caring received a major grant from the Robert Wood Johnson Foundation (RWJF) to manage the foundation’s Last Acts program.(38) (The RWJF had launched Last Acts in 1997 as a multi-year, multi-million dollar program. (39)) Another name change was announced in 2004, when Partnership for Caring, referring to its roots as "a 66-year-old organization" formally combined with the Last Acts program and began to operate as "Last Acts Partnership,"(40) relying primarily on funding from the RWJF. Kaplan announced the "merger" in a "Dear Friends" letter.(41)

Last Acts as the last act

Trouble for the Last Acts Partnership began to surface publicly in mid-2004 when its primary financial backer, the RWJF, became concerned about the group’s fiscal condition, including "unexplained financial anomalies."(42) In an October 2004 "Dear Colleague" letter, John R. Lumpkin MD of the RWJF, wrote that, after an assessment of the financial status, management structure and programmatic viability of Last Acts Partnership, a decision had been made "to wind down its affairs in an orderly fashion and go out of business."(43)

As of December 2004, the Last Acts web site had closed down all together. Individuals accessing Partnership for Caring’s site saw the following message: "Partnership for Caring is no longer in operation: the information provided on the site is informational only."(44)

It appears that after sixty-six years, numerous name changes, and millions of dollars received and spent, the organization that began as the Euthanasia Society of America has gone out of existence. However, the corporation has not been formally dissolved. It remains to be seen if it will come back under yet another name.

From "Hemlock" to "Compassion & Choices"

Hemlock

Although founded over forty years later, the Hemlock Society’s path seems, in many ways, to mirror that of the Euthanasia Society of America. That path has been marked by spin-offs, name changes, image adjustments, mergers and, now, dissension.

In 1980, there was no visible presence of euthanasia advocacy on the West Coast. Ann and Derek Humphry changed that when, on August 21, 1980, they started the Hemlock Society.(45) The group’s mission was described in its first newsletter. Gerald Larue, one of the original board members, explained that he was working with other professionals (trained therapists and psychologists) "to discuss the training of counselors prepared to help those who are considering self-deliverance [suicide]."(46) Ann Humphry wrote that euthanasia should be considered an acceptable means of dealing with life-threatening conditions: "[W]e would like to strive towards an objectivity which considers any tenet of voluntary euthanasia a valid one."(47)

Let Me Die Before I Wake, Hemlock’s first suicide manual, helped put the organization on the national right-to-die map. In 1982, Hemlock started using a professional Hollywood publicist to bring the book to the public’s attention and to promote appearances by Hemlock spokespersons on radio and television. The book’s sales brought in income. Publicity about it brought in new members, donations and more publicity.(48) It also transformed Hemlock from a small west coast group into a national organization.

In 1986, Hemlock unveiled its first proposal to legalize assisted suicide and euthanasia – called the "Humane and Dignified Death Act" (HDDA) – at its third national conference. The HDDA was to be a ballot initiative that would amend the California constitution to permit "aid-in-dying," defined as "any medical procedure that will terminate the life of a qualified patient swiftly, painlessly, and humanely."(49)

Spin off: Americans against Human Suffering

In his opening remarks to conference attendees, Derek Humphry explained that Hemlock had facilitated the formation of another organization, called Americans Against Human Suffering (AAHS), to do the political heavy-lifting.(50) "The Hemlock Society has given $50,000 of seed money to start this organization up," he said. In addition, Hemlock was to have representation on the AAHS board.(51) "We are targeting California first, of course," Humphry explained. "It is the bell-weather state, as you know, of so many great social issues." (52)

For months, Hemlock activists gathered signatures that would be needed to place the initiative on the ballot and AAHS spokespersons met with policy makers and professional organizations to drum up support. But their efforts fell short. They failed to obtain enough signatures.

With the failure of the California initiative, Hemlock began looking for more fertile ground. It settled on Oregon as a base from which it could work toward reaching its goals. In the summer of 1988, it moved its national headquarters from Los Angeles to Eugene, Oregon and soon announced plans to spearhead "physician aid-in-dying" initiatives in Oregon, Washington and California.(53)

Unitarian minister Ralph Mero, the founding president of Hemlock’s Washington State chapter, had previously been named Pacific Northwest Regional Director of the Hemlock Society.(54) He was soon handling the Washington State initiative effort.(55)

For the first time, a Hemlock-spearheaded measure made it to the ballot. It was the Humane and Dignified Death Act but appeared on the ballot under a new name: "The Death with Dignity Act."(56) Had it passed, it would have legalized both assisted suicide and euthanasia by lethal injection under the label, "aid-in-dying." As the November vote drew near, Derek Humphry said, "The world is watching what happens in Washington and, if they are not convinced by that, then I think California will make the point next year." Vowing to fulfill the goal of changing the law throughout the country, he said, "We are hoping for the domino effect."(57)

In April 1991, Hemlock published Final Exit and, on August 18, 1991, the book topped the New York Times bestseller list in the "Advice, How-to and Miscellaneous" category. "It tells you how, where and when to kill yourself or someone else. It breaks the last taboo. Follow my instructions for a perfect death, with no mess, no autopsy, no post-mortem," Humphry said.(58) Steven Schragis who handled publicity for the book explained that the book’s acceptance by mainstream bookstores signified just how well the voluntary euthanasia movement was growing.(59)

The success of Final Exit seemed to bode well for passage of the Washington initiative, as did the fact that its supporters had a five to one fund-raising advantage over opponents(60) and surveys indicated a potential landslide win for "aid-in-dying."(61)s But when citizens of the state of Washington cast their ballots on November 5, 1991, they refused to grant doctors the legal right to kill their patients. Initiative 119, the Death with Dignity Act, failed by a 54 to 46 percent margin.

The following year, an identical "Death with Dignity Act" appeared on California’s ballot as Proposition 161. Californians Against Human Suffering (the new name for the Hemlock spin off previously called Americans against Human Suffering) coordinated the campaign. On November 3, 1992, California voters rejected the measure by 54 to 46 percent – the same margin as that in Washington the previous year.

ERGO formed

By the end of 1992, Derek Humphry had resigned from Hemlock. Publicly, the reason was his desire to be free of administrative duties so he could devote time to writing, public speaking and campaigning for law change. (62) However, controversy surrounding the suicide death of Ann, his second wife, and allegations that he had smothered Jean, his first wife, had caused dissention within Hemlock in the preceding months.(63) Humphry retained the title of Hemlock "founder and consultant"(64) and also identified himself as vice president of Americans for Death with Dignity.(65) (Americans for Death with Dignity was the latest name for the group that had been called Americans Against Human Suffering(66) and then Californians Against Human Suffering.)

That same year Humphry formed the Euthanasia Research and Guidance Organization (ERGO).(67) Other Hemlock activists, disenchanted by Humphry’s departure from the organization, became active in ERGO while continuing their Hemlock activities.(68)

Under the ERGO banner, Humphry established a right-to-die internet mailing list that serves as an on-line forum for euthanasia and assisted suicide activists. ERGO also conducts seminars to explore new methods of assisting suicide. The new group’s mission was "to identify and research aspects of physician-assisted suicide and active voluntary euthanasia for the terminally ill and to educate the public about the complexities of assistance in dying."(69)

One of ERGO’s first public events was a seminar to teach the fine points of using a plastic bag to commit suicide.(70) ERGO later released a pamphlet giving step-by-step instructions on the plastic bag method. (71)

Another spin off: Compassion in Dying

Defeat of the 1991 Washington State initiative spawned yet another right-to-die group, Compassion in Dying (CID). Ralph Mero, its first executive director, described CID as "an outgrowth of the Washington State Hemlock Society chapter."(72) (Mero directed the Hemlock chapter until taking over the helm of CID.) According to Mero, "The Washington Hemlock chapter strongly wanted to expand its mission" to offer suicide assistance in "deserving cases" so it created a separate organization for that purpose.(73)

CID was officially organized in Seattle in April 1993 as a 501 (c) (3) organization(74) and, before long, the small band of activists, led by Mero, were making news across the country(75) as "the most controversial right-to-die venture" since Jack Kevorkian began plying his trade.(76) As the first U.S. group to publicly admit offering assistance in committing suicide, CID acknowledged involvement in twenty-four deaths during its first thirteen months of operation. It subsequently refused to divulge additional participation.(77) Mero and his activities even became the cover story in The New York Times Magazine.(78)

Coverage of CID’s activities caught the attention of Kathryn Tucker, an attorney with Perkins Coie,(79) the Pacific Northwest’s largest law firm. Tucker, who had served as principal outside counsel to sponsors of the failed Washington "Death with Dignity Act,"(80) contacted Mero and suggested that, rather than exposing itself to possible prosecution, it may be better for CID to challenge the constitutionality of Washington State’s law prohibiting assisted suicide.(81)

That call launched two cases which would eventually reach the U.S. Supreme Court. It also led to a major ongoing role for Tucker with CID. This shift in activity permitted CID to take on the aura of a respectable organization working within the law. And, ultimately, it led to Mero’s ouster.

Commencement of CID’s challenges to state laws banning assisted suicide occurred at the same time an initiative campaign to legalize assisted suicide was taking place in Oregon. Hemlock’s leadership had changed. Sidney J. Rosoff, former board chairman of the Society for the Right to Die was now its president and John Pridinoff, a California minister had taken over as executive director. Overtures were made to medical and legal associations as the organization sought to take on a mainstream image.(82)

However, general respectability eluded Hemlock while CID, its scrappy spin off grew in public acceptance. CID became the better known of the two organizations, due, in large part to its involvement in court cases.(83) Even though CID lost each case, it achieved tremendous success in the publicity and fundraising arena.(84)

Expectations of success

Events in Oregon during 1994, as well as CID’s court challenges of assisted suicide laws, boded well for euthanasia and assisted-suicide advocates. After years of work, they believed they were poised to make the needed breakthrough.

In anticipation, the Death with Dignity Education Center (DWDEC) held a conference on October 14, 1994, in San Francisco because "these are eventful, pivotal times for the movement."(85) (The DWDEC, funded largely by the Gerbode Foundation to organize "summit meetings" of right-to-die groups, was the "educational offshoot of Americans for Death with Dignity."(86)) According to Michael White, DWDEC president, "Our common objective is to affect public opinion on the right to die. We all know what we’ve accomplished, and mean to do in the future, but we don’t always know what is happening in the trenches." Representatives of Americans for Death with Dignity, Choice in Dying, Compassion in Dying, the Death with Dignity Education Center, ERGO, Hemlock and Oregon Right to Die (the political entity promoting Oregon’s assisted-suicide initiative) were in attendance.(87)

Less than a month later, Oregon voters approved the "Death with Dignity Act," making Oregon the first and only state to transform the crime of assisted suicide into a medical treatment.(88) The law went into effect three years later. Since then, Oregon has been used as the "poster state" to make claims that assisted suicide is a personal choice that, when legal, is used infrequently and under carefully controlled guidelines.

Right-to-die leaders were certain that other states would soon follow in Oregon’s footsteps. But they were wrong. In state after state, ballot initiatives and legislative proposals went down in defeat. Meanwhile, both Hemlock and CID forged ahead with attempts to build greater public acceptance.

In the summer of 1996, Barbara Coombs Lee replaced Ralph Mero as CID’s executive director and president and moved CID’s headquarters to Oregon. Coombs Lee, who had helped draft Oregon’s assisted suicide law and had been chief petitioner and a major spokesperson for the Oregon "Death with Dignity Act," left her position as vice president of a large Oregon managed care company to take over the helm of CID.(89)

Under Coombs Lee’s leadership, foundation funding enabled CID to expand into a national organization with chapters in states throughout the country including Alaska, California, Connecticut, Hawaii, Montana, New York, Oregon and Washington.(90) Major funders included George Soros’ Open Society Institute, the Gerbode Foundation and the Columbia Foundation.(91)

Additionally, Compassion in Dying of Oregon became the point group for facilitating legal assisted suicide in Oregon.

Hemlock undergoes another "makeover"

By late 1996, John Pridonoff was gone. His attempts to take Hemlock into the mainstream had failed while, at the same time, the organization had lost members and financial support. Rank-and-file Hemlock members had considered Pridonoff’s approach to be too conservative.

Faye Girsh, a long-time Hemlock activist and a board member of ERGO had taken over as Hemlock’s executive director. (She would later hold the title of Hemlock President.) The organization had moved its headquarters to Denver in January 1996 so that it would "bring Hemlock to the heartland of America, where it will be more accessible to Hemlock chapters throughout the country." The move was to be part of a "rebirth" with a new staff and a new direction.(92) Gone also – but only temporarily – were the days of wooing medical associations. Also gone were the days of waiting for Oregon-type laws to be adopted in other states. Hemlock turned back to its roots as an activist group, willing to push the envelope.

Under Girsh’s leadership, Hemlock expressed admiration for Jack Kevorkian. (Girsh called Kevorkian’s lethal injection killing of Thomas Youk, "a courageous act of compassion."(93) And Fred Richardson, when he was chairman of Hemlock’s board said Kevorkian had been "practicing what we preached."(94)) Once again, Hemlock began to receive large gifts from longtime supporters. And the organization unveiled a new program called "Caring Friends."

Caring Friends program

As court cases were lost and other states failed to adopt Oregon-style laws, Hemlock leaders and members were outraged. Describing their frustration at a 2003 conference, Faye Girsh said, "Well, damn it, we had to do something. Gosh, you know, you go through all the channels and they don’t help you....so you just have to take things into your own hands."(95)

The "something" that was done was the establishment of a new Hemlock program, euphemistically called "Caring Friends." According to Girsh, Caring Friends received its inspiration from what Ralph Mero had done when he established Compassion in Dying as a spin-off of Hemlock in Washington State. Girsh said she and Derek Humphry "applauded the guts of Ralph Mero" because, at the time, he not only assisted suicides, but publicized what he was doing.(96) Now that CID was limiting itself to implementing the Oregon assisted-suicide law, Caring Friends picked up the baton to assist in deaths outside of Oregon.

An Arizona woman, who later killed herself, provided $40,000 seed money to begin training volunteers to facilitate deaths through Caring Friends. The first training was held in San Diego in November 1998.(97) By 2003, the program had more than 100 trained volunteers in various states and was conducting additional sessions to increase that number.(98) To emphasize why Caring Friends needed more volunteers, Girsh discussed the suicide deaths of Morris and Estelle Spivack, an elderly Florida couple who had been married for forty-two years. She explained that the Spivacks leaped to their deaths from their seventeenth-floor condominium. Then she said, "Do we need to expand the Caring Friends program? Yes," she replied, implying that, with Caring Friends’ help, their deaths would have been accomplished in a more aesthetic manner.(99) (Although increasingly feeble, neither of the Spivacks was terminally ill.(100))

Dr. Richard MacDonald, Hemlock’s medical director, who was also a speaker at the 2003 conference, described the manner in which a Caring Friends’ assisted death is accomplished. He said that, when Caring Friends first began, it used barbiturates, but it soon became increasingly difficult for people to obtain them. As a result, "We have had to shift to techniques using plastic bags and helium. That, remarkably, has become an acceptable method of hastening death."(101)

Hemlock publications had also touted the ease with which such a death could be accomplished:

A plastic bag and helium produces "gentle, quick and certain death."(102)
The gas "disperses easily and is difficult to trace in a corpse."(103)
During the dying process "a little twitching in the arms and leg" should be expected.(104)
One should say goodbye before the bag is pulled over the head since, once the flow of gas begins, "the helium makes the voice sound like Donald Duck."(105)
"Although a large plastic bag for roasting can be used, we recommend the Canadian Exit Bag for Helium, which can be obtained from..."(106)
"If a regular plastic bag is used, a rubber band or panty hose loosely tied around the neck is necessary."(107)

While he initially had some reservations about the plastic-bag method and acknowledged that it is not a medical procedure, MacDonald said that the idea of his being present at a hastened death was "to ensure that people were comfortable, that their loved ones and the volunteers would understand how death occurs."(108)

At the 2003 conference, MacDonald indicated that he had been present "at more dying events in the last four years than in fifty years of practice."(109) Although he wouldn’t give exact numbers, he said he had been present at over eight-five of the more than 120 Caring Friends’ deaths in a four-year period. "I’m sort of a midwife to ensure that we depart safely and surely and as peacefully as possible," he said. "I want to tell you what a privilege it is to attend a hastened death."(110)

Yet MacDonald was not satisfied with assisted suicide. He said, "Do I think that is the best way to die? No." (111) He explained that, when he dies, it will be by lethal injection which will be available to him since he’s a doctor. He considers it unfair that others who can’t have the same opportunity are being treated as "second class citizens."(112)

Girsh, MacDonald, and Lois Schafer, who coordinated the Caring Friends program, remained in their positions until their ouster at the end of 2004.

New name: End-of-Life Choices

In the Fall of 2001, the Hemlock board embarked on a road intended to change and strengthen the organization. With Caring Friends well underway to carry out activities that pleased its supporters, it sought, once again, to increase its appeal to the general public. To do that, the board decided it needed to do two things: Bring in a top professional nonprofit executive to run the organization and put new strategies, techniques and methods in place to work in the legislative arena.(113) Faye Girsh was moved out of her leadership role and given the title Senior Vice President.

As part of the transformation, Hemlock officially changed the name it had used for twenty-three years. In mid-2003 it became "End-of-Life Choices" with the tag line, "Dignity-Compassion-Control." Many Hemlock members were unhappy with the name change but leaders described it as a necessity if the group wanted access in important places: "The name ‘Hemlock’ has a history and much of it is a history of earnest defiance but much of it is also ‘baggage,’ baggage that we can no longer afford to have weighing us down or interfering with our being able to partner with such important and powerful organizations as AARP."(114)

At the same time, the organization launched its "National Advocacy Plan." Included in that plan was completion of a "refined" Oregon-style model law that placed emphasis on pain control.(115) It also announced plans to form groups with names like "Doctors for Death with Dignity," " Nurses for Death with Dignity," and "Clergy for Death with Dignity" so that "enemies of choice" would no longer be able to claim that all doctors, nurses and clergy are opposed to assisted suicide.(116)

EOL Choices concentrated on what it called its "two pillars" – the Caring Friends Department (which it referred to as "client services") and the Government Relations Priorities (to promote laws permitting assisted suicide).(117)

Paul A. Spiers became Chairman and David Brand was named CEO.(118)

Unification: Compassion and Choices

Meanwhile, EOL Choices and Compassion in Dying commenced serious talks to explore a merger between the two groups. Within a year the merger was announced. The former Hemlock Society and its spin off, Compassion in Dying, announced that they had merged and would be known as "Compassion and Choices."

Paul Spiers sought to reassure the rank and file of EOL Choices. "This is not a takeover or a sellout," he wrote. And he sought to allay fears that Caring Friends would not continue if there were a merger. "Client services, or what we call Caring Friends, is something with which Compassion has several more years of experience....[T]o once and for all dispel any rumors you may have read or heard, Caring Friends will not cease to exist under unification. On the contrary, it will thrive."(119)

EOL Choices communications director Julian Rush explained that "client service" would be enhanced and that all volunteers currently serving with CID or EOL Choices would participate in a new training together to ensure that everyone becomes "trained in the methodology of the other."(120)

Peter Forchheimer of Atlanta reminded members that billionaire Peter Lewis of Progressive Insurance Company had indicated once that unification of right-to-die groups would likely result in larger donations because it would present a more promising business model.(121)

Claire Simons, a spokesperson for Compassion in Dying said the merger would both strengthen the right-to-die movement nationally and could help bring greater attention to the need for assisted suicide. "We need another state," she said, referring to the fact that, since passage of Oregon’s law in 1994, no other state had approved assisted suicide. "We’re tired of being the sprouts-chewing liberals out in Oregon."(122)

The merger (which was also referred to as a "unification") was announced in a November 2004 "Dear Friend" fund-raising letter, signed by both Barbara Coombs Lee, CEO of Compassion in Dying, and Marsha Temple, who had succeeded David Brand as CEO of EOL Choices. Coombs Lee and Temple stressed, "United by our common mission, we are poised to make greater strides than ever before for the choice-in-dying movement."(123)

In an internet-posted unification announcement, Compassion and Choices pledged to continue services to members and others "who seek peaceful and humane choices at the end of life" and said it would "aggressively pursue significant legislative reform, promote pain care, put teeth in advance directives and legalize physician aid-in-dying."(124)

Initially, Compassion and Choices will be governed by a nine-member board composed of board members from both EOL Choices and Compassion in Dying. The board will be chaired by San Francisco physician Robert Brody. It will keep both the Denver office, headed by Marsha Temple, and the Portland office, headed by Barbara Coombs Lee.(125) According to communications director Rush, Compassion and Choices would function as one office with the two locations. Client intakes and counseling will be located in Portland, while volunteer management will be done from Denver. (126) Each of the two joint CEOs will receive an annual salary of $105,000.(127)

On December 9, 2004, Marsha Temple told Faye Girsh that her position with the organization would be terminated as of December 31. According to Girsh, she did not resign or retire from the organization. She wrote that she was "sorry not to be part of its new thrust." Reflecting on the fact that she, with others, had started the Caring Friends program that has served as "a world-wide and unique model of community-supported dying," Girsh noted that Lois Schafer, the Caring Friends coordinator was also leaving at the end of December.(128) Dr. Richard MacDonald was also dropped as the organization’s medical director.

Girsh explained that she would remain active in the right-to-die movement and would continue to sit on the boards of Americans for Death with Dignity, ERGO and the World Federation of Right to Die Societies. She said she was also excited about a new organization, called the "Final Exit Network."(129)

Although Girsh did not sever ties voluntarily, others did.

Exits

Fred Richardson had been Hemlock’s chairman when it embarked on its transformation in 2001. As a Maine legislator, he had sponsored an Oregon-style law. But, after the merger, he left the movement entirely. In a letter to the right-to-die mailing list, Richardson said, "Compassion and Choices had to come together. The trouble is that the union, and the persons who appear to be running it, and particularly the other large RTD organization (Death with Dignity National Center/Oregon Death with Dignity) are in danger of bringing together both self-destructive and movement limiting perspectives...."(130)

Dissatisfied with the pending merger, the Oklahoma chapter of EOL Choices dissolved itself.(131) Dennis Kuby, chapter leader of Hemlock’s Berkeley, California chapter, changed his group’s name to the "Socrates Society."(132) Other members and chapter leaders also pulled out of the merged organization.

But the most outspoken exodus was that of Derek Humphry. In November 2004, he blasted the direction and leadership for misuse of Hemlock/EOL Choice funds. In a message titled, "Two million spent in a year," he wrote:

The combined annual accounts for the Hemlock Foundation and End-of-Life Choices show that their joint financial position in 2003 was worth $5,025,346. The same position at the end of their financial year (June 2004) was $3,061,673...

Office rent paid in Denver for the year ended June 2004 was $90,469. In their new luxury office, this coming year, the rent will be $182,798.

Now you [have] one reason why I cancelled my Life Membership earlier this year in protest at this unwise use of public money. In my opinion, the receipt of huge legacies from old-time Hemlock members since 2000 seduced and diverted what was Hemlock from its true mission – helping people at their life’s end – into a business, and a badly run one at that. Is there any wonder at the "splintering" that’s going on?(133)

In addition to Hemlock chapters closing or deciding to go it on their own, "splintering" was a reference to the yet-one-more new group, the "Final Exit Network," formed by Hemlock members who did not want to remain with Compassion and Choices.

There is no way to be certain if Compassion and Choices will strengthen, or if it will continue to spend money with no results, ending like Partnership for Caring. But, as of the end of 2004, one thing was certain. The group was gearing up for a number of battles – including attempts to legalize "aid-in-dying" in California, Hawaii, Vermont and Arizona. [Those proposals are discussed later in this report.]

Final Exit Network

Former Hemlock/EOL Choices members and leaders who were unhappy with the merger between EOL Choices and Compassion in Dying established the "Final Exit Network" on September 16, 2004.(134) Incorporated in the state of Georgia, the group’s name was determined at a founders’ meeting held in Chicago in August.(135)

The Final Exit Network trained its first fifteen "Exit Guides" at the St. Louis Marriott Airport Hotel in November 2004 where, according to the groups’ first newsletter, medical director Dr. Larry Egbert explained the policies and principles to Exit Guide trainees. Then, using an "Exit Bag," he "demonstrated the method of helium inhalation that we recommend."(136) Before leaving EOL Choices,(137) Egbert had been a Caring Friends volunteer where he had been present during about fifty deaths, most using helium.(138)

The "highlight" of the weekend training was a "hands-on" experience where participants "exchanged opportunities at being the ailing member, the guide, and the senior. These rehearsals were with real helium, real exit bags, and real dialog. Each person got to show how they would handle a similar situation."(139)

In its year-end report, the Final Exit Network announced, "We have completed our first case" and proudly noted that the caseload was building. "Most significant, the Network has 17 potential Members’ cases signed up for future Exits."(140) According to its policies, those seeking assistance "do not have to be terminal to be eligible for the Exit Guide program."(141)

In addition to its Exit Guide service, the Final Exit Network has a research component, pledged to support efforts to find better ways to "self-deliver." As part of that pledge, the organization had already sent funding to Australian euthanasia activist, Dr. Philip Nitschke.(142)

Nischke advocates assisted suicide and euthanasia for children as well as for adults(143) and is currently conducting workshops to instruct Australians on the way to manufacture their own suicide pill.(144) He has long been a celebrity in right-to-die circles.

In 1999, Nitschke was the featured speaker at the Arizona Hemlock chapter’s state conference.(145) Earl Wettstein who is currently president of the Final Exit Network was president of the Arizona chapter(146) at that time and also served on the board of EOL Choices.

Other board or advisory board members of the Final Exit Network include Derek Humphry, Faye Girsh, Ila DeLuca (formerly with Arizonans for Death with Dignity), Ted Goodwin (a former Caring Friends volunteer and former board member and treasurer of Hemlock/EOL Choices), Bob Brush of San Diego (former Caring Friends volunteer and former national EOL Choices board member), Arthur Metcalfe of San Diego (former board chairman of Hemlock), Andi van der Voort (former head of Hawaii Hemlock/EOL Choices) and Ruth Fuchs of Toronto (president of the Right-to-die Society of Canada).(147)

The impact of the Final Exit Network remains to be seen. However, it may have a result that is unintended by its organizers. Since the organization, through its name and activities is more "in your face" that any recent right-to-die groups, it may actually help Compassion and Choices.

How? By moving the boundaries.

Without the Final Exit Network, Compassion and Choices could appear extreme with its Caring Friends program and its activist approach to legalizing assisted suicide. But Compassion and Choices uses more "politically correct" and comforting terms than the Final Exit Network. Certainly, "Compassion and Choices" and "Caring Friends" sound more benign that "Final Exit Network" and "Exit Guides." Additionally, Compassion and Choices has made the politically savvy move of including pain control in the issues it addresses so that it is not seen as solely an assisted suicide advocacy group.

Thus, the Final Exit Network could be seen as one extreme. Those who seek to retain protections for vulnerable people by opposing assisted suicide could be looked on as the other extreme. And Compassion and Choices, by default, would be viewed as the "moderate middle."

Death with Dignity National Center

The Death with Dignity National Center (DDNC) is another right-to-die group that has recently undergone expansion and contraction. It originated as Americans Against Human Suffering – a Hemlock spin off – and had also been known as Californians Against Human Suffering and the Death with Dignity Education Center. Estelle Rogers was DDNC’s executive director. It had been the recipient of a number of large foundation grants from sources that included George Soros’s Open Society Institute and the Gerbode Foundation.(148)

The Oregon Death with Dignity Legal Defense and Education Center (ODWD) was originally known as Oregon Right-to-Die which had been the lead campaigner in the passage of Oregon’s assisted-suicide law.

In mid-2003, the Portland-based ODWD joined forces with the DDNC. Scott Swenson was ODWD’s leader at the time of the merger announcement. According to Swenson, after the merger, a new Oregon Death with Dignity Political Action Fund would focus on fund-raising and promoting Oregon-type laws in other states. Initial focus was to be on Hawaii and Vermont.(149)

When the two organizations combined under the DDNC name, they followed the same pattern as prior right-to-die group unifications. Estelle Rogers was eased out of her leadership position.

Scott Swenson took over the helm of the consolidated organization, with offices in both Washington DC and in Portland, Oregon, and a board made up of members from each of the two groups. Creation of the unified entity was described as a "bi-coastal powerhouse for patient choice" that would strengthen right-to-die advocacy.(150) "This is the next step in building the movement," said Swenson. "We’ve been on the defensive for a while and now it’s time to play offense."(151)

At the beginning of 2004, the DDNC announced an ambitious plan of national outreach with special events in Washington DC and in Oregon, "as well as aggressive advocacy in other states seeking to replicate the DWD model."(152) (The DWD model is Oregon’s assisted-suicide law.)

By the end of the year, the "bi-coastal powerhouse" was in the process of downsizing. Its Washington DC office was among the 2004 right-to-die casualties. In mid-December, Swenson announced that he was leaving the movement and that the office would close on January 7, 2005. His announcement noted that the Portland office of DDNC would continue "doing its main job of defending the Oregon physician-assisted suicide law against repeal."(153)

After sixty-six years, and after using many different names and approaches, euthanasia organizations in the United States could point to Oregon as the only state where their goal had been met. One right-to-die activist put it succinctly when he wrote: "It appears that our political efforts have not accomplished much except to spend a lot of money." (154)

Nonetheless, those who are seeking to transform the crimes of assisted suicide and euthanasia into medical treatments are committed to their agenda. They will not let past losses deter them from forging ahead with renewed vigor.

.........

Endnotes for Part I:

1. As used in this report, "assisted suicide" refers to intentionally and knowingly providing the means of death to another person so that the person can commit suicide. (e.g. A physician writes a prescription for an intentional drug overdose so that a patient can die of the overdose, a patient pushes a switch to trigger a fatal infusion of drugs after the doctor has inserted an intravenous needle into the patient’s vein or one person helps another commit suicide using a plastic bag and helium gas.) In assisted suicide, the person who dies takes the last act – without which death would not occur.

2. As used in this report, "euthanasia" refers to intentionally, knowingly and directly taking an action that causes the death of another person. (e.g. A physician gives a patient a lethal injection, a person smothers another with a pillow.)

3. Although both euthanasia and assisted suicide had been widely practiced in the Netherlands for many years, they remained technically illegal until passage of a bill for the "Review of cases of termination of life on request and assistance with suicide" was approved in April 2001. Belgium’s law permitting euthanasia and assisted suicide, "The Belgian Act on Euthanasia of May 28, 2002," went into effect on September 23, 2003.

4. Oregon’s "Death with Dignity Act" (ORS 127.800-8987) passed in November 1994 and went into effect in late 1997.

5. "Right-to-die USA group closing down," Message on ERGO’s right-to-die electronic mailing list, October 8, 2004. (on file with author)

6. Euthanasia Society of America, Certificate of Incorporation, November 28, 1938. (on file with author)

7. "’Mercy’ Death Law Proposed in State," New York Times, January 27, 1939.

8. "’Mercy’ Death Law Ready for Albany," New York Times, February 14, 1939.

9. The Living Will was first proposed at a Chicago meeting by Luis Kutner, a member of the advisory board of the Euthanasia Educational Council. Kutner said it would promote the discussion of euthanasia. "History of Euthanasia in U.S.: Concept for Our Time," Euthanasia News, vol. 1, no. 4 (November 1975), p.3.

10. It should be noted that, in the years since its formulation by the euthanasia organization, many people who have promoted the Living Will are totally unaware of the document’s origins. Furthermore, many people who have promoted the document do not favor legalization of assisted suicide or euthanasia.