On a sunny Thursday in September, a visit to the AMC Theater on East Illinois Street did not result in your typical afternoon at the movies.
First, there were the dozens of sidewalk protesters to pass through, many in wheelchairs and all clad in bright pink shirts reading “Not Dead Yet.” They sang the chorus, “Don’t murder us. We want to live.”
Inside, the activists being protested against were a disproportionately geriatric crowd. The hair was mostly gone or gray; many used canes, walkers, wheelchairs; and, despite a grim topic, there was an abundance of smiles.
Overheard, there was the mundane: “We’re much slower to change than Europe.” But the conversation was usually much more profound. “Who was I to say to my mom, ‘No, you have to go on suffering’?” one South African man asked, before describing how he had provided his mother, upon her request, a lethal dose of “crushed-up morphine.”
“I don’t think any humane person would have done anything differently than what I did,” he said.
Welcome to the World Federation of Right to Die Societies biennial conference.
Over three days here and at an adjacent hotel, it offered visitors a smorgasbord of the world’s most venerable speakers on the complex and controversial topic of what it calls “aid in dying.” Outside on the sidewalk, the term used was “assisted suicide.”
Because both sides use language as part of their argument, here is roughly the process they’re talking about:
Two doctors must agree that a terminally ill patient has less than six months to live. That patient asks for a medication — typically barbiturates — that will result in death. After waiting 15 days, the patient makes a written request for the drugs. If the patient is “competent” and the doctor personally agrees with the practice, a prescription is written for the drugs. The patient picks them up. If taken, they typically cause death within an hour.
It is legal for doctors to participate in this process in a handful of states, including Oregon, Washington, Montana and Vermont. Other states expressly prohibit it. Gray areas exist in Hawaii and, at least for the moment, a portion of New Mexico.
The laws allowing it prevent doctors from being prosecuted for the only type of illegal suicide — the assisted kind.
Supporters here spoke of a global movement to expand “the ultimate human right” — control over your own passing. Allowing physicians to write prescriptions that bring on death, advocates say, is just the next step in what’s known as palliative care — a movement within the medical community to alleviate pain and suffering at the end of life.
But opponents outside view “death with dignity” laws as a slippery slope that could create an inequality in society: Healthy people are actively discouraged from committing suicide, while the sick or elderly are tacitly told it’s OK.
A crucial third party, the physicians who would write these prescriptions, appear torn on the issue. While some believe the process is a legitimate part of providing a continuum of care (after all, everyone dies, the argument goes), others say intentionally bringing on a patient’s death breaches medical ethics.
Whatever you believe, the death discussion is about to escape taboo in Illinois. A campaign is forming to push the Illinois Patient Choices at End of Life Act through Springfield.
Death — worth fighting for
Standing at a podium in front of a mostly full movie theater, the master of ceremonies for the afternoon introduced himself, for the few who didn’t know him already: “Derek Humphry, the infamous.”
A stout, balding man who sometimes uses a wheelchair, Humphry is perhaps the second most public face in the death with dignity movement, behind only “Dr. Death,” Jack Kevorkian.
In 1980, Humphry founded the Hemlock Society, one of the earliest groups advocating legislation to allow physicians to prescribe lethal medications for terminally ill patients.
That led to an attempt by Oregon state senator Frank Roberts to pass a bill in the early 1990s. Despite being the longest-serving senator in the state and being married to the governor, Roberts’ effort failed even to reach a vote. He died a slow death from pancreatic cancer in 1993 — an ordeal he hoped his legislation would have allowed him to avoid.
Oregon’s Death with Dignity Act was passed by a voter referendum in 1994, with 51 percent in favor. After a legal challenge, the voters again passed it via referendum in 1997: 60 percent in favor this time.
Barbara Coombs Lee, a staffer in the Oregon Senate at the time, has gone on to be a prominent activist in the area. She told PBS in 2012 that Roberts’ failure in the legislature inspired her: “It was that back-scenes look at how disparaged and unwelcome in the political arena are conversations about the end of life that really opened my eyes.”
More than 20 years later, Ed Gogol hopes the political conversation will reach a different outcome in Springfield.
As president of Hemlock of Illinois, Gogol is leading the charge for change in this state. He helped organize a group, including four lawyers, to draft the Illinois Patient Choices at End of Life Act.
Like Lee and many others in the movement, he became involved after what he called “loved ones’ bad deaths.” The first was the slow degeneration that Parkinson’s disease inflicted on a friend. She ultimately asked Gogol and his wife to help her “hasten her death,” which they agreed to do by putting her in touch with Final Exit Network, whose “exit guides” help the terminally ill end their lives.
“It was a beautiful thing,” said Gogol, whose sister also endured prolonged suffering at the end of her life as she battled ovarian cancer.
Gogol is at once excited about the effort to pass a law in Illinois and pragmatic about its chances of success.
“We are going to be working the rest of this year and next year to build support — expand our membership, reach out to lots of groups and educate our state legislators,” he said.
Then, reflecting on the vast effort it took to pass the law in Oregon — which he compared in size and scope to the campaign in Illinois for gay marriage — he said, “We’re not there yet.”
Chris Mooney, director of the Institute of Government and Public Affairs at the University of Illinois’ Springfield campus, said it is highly unlikely that the Hemlock-supported bill would pass in the next legislative session.
Euthanasia is a new political issue here that the legislature has not been educated about — a crucial process for passing laws. Further, the General Assembly typically doesn’t lead the nation on these types of social changes, he said.
The state’s politics are not seen as similar to Oregon, Washington or Vermont. And the issue is also highly contested by a powerful political opponent: the Catholic Church.
“Add it all up together, and it doesn’t sound too likely that it will happen any time soon,” Mooney said. “They’ve got their work cut out for them, but that’s not to say it’s never going to happen.”
To gauge their level of interest in the issue, Chicago Lawyer contacted the gubernatorial campaigns of Democratic Gov. Pat Quinn and Republican Bruce Rauner in early October. The calls were not returned.
A gridlock for ‘compassionate death’
Nationally, polls show that Americans have consistently been in favor of aid-in-dying legislation.
In a long-running Gallup poll, since the early 1990s, about 65 percent have been in favor of allowing physicians to “end a patient’s life by some painless means” upon request. Today, 69 percent are in favor.
And yet, the historical odds are not in Gogol’s favor.
As of 2011, legislative campaigns had failed in California, Hawaii, Vermont, Wisconsin, Arizona and Pennsylvania, according to an article in the Whittier Law Review. And, in March, Connecticut was added to that list after lawmakers failed to take up a vote on a bill that was heavily debated.
Last year, Vermont was the first state legislature to pass a statute allowing assisted suicide, joining four others that previously legalized it: Oregon (since 1997), Washington (via a 2008 voter referendum), Montana (by the state Supreme Court in 2009) and New Mexico (by way of a court ruling this year that is being appealed to the state’s high court).
In Arkansas, Idaho, Georgia and Minnesota, it is expressly prohibited by statute. And despite successful voter referendums in two states, that tactic is not always foolproof. Massachusetts voters in 2012 turned it down, 51-49.
A ballot initiative in Illinois would be highly unlikely, if not impossible.
“Many initiative scholars don’t even count (Illinois) as an initiative state,” a review of Illinois’ referendum policies by the Initiative and Referendum Research Institute at the University of Southern California says.
Nevertheless, the convention-goers who congregated in Chicago believed their cause is having a moment on the world stage. Quebec this year passed a bill decriminalizing assisted suicide, and euthanasia is thriving in Europe and, in particular, the Netherlands (a Dutch speaker was the only one at the conference to consistently use the term “euthanasia”).
“Choices will expand,” said Kathryn Tucker, executive director of the Disability Legal Rights Center in Los Angeles. “Aid in dying will become increasingly available.”
A laboratory develops
If anybody would know, it’s Tucker, who has been one of the most influential lawyers in the movement and who crafted or helped craft the successful legal strategies in Montana and New Mexico.
She has helped identify the states that might be most accepting of death with dignity laws and developed court cases that stand the best chance at defeating what she calls aid-in-dying prohibitions.
When asked by a convention-goer what needs to be done to pass such a law in Illinois, she offered what could have been considered a warning: “The question of ‘where is the next most-favorable forum’ is a very complicated question, (because) a failure makes it that much harder in other places.”
Tucker has been successful in the past. She argued in front of the U.S. Supreme Court in Washington v. Glucksberg, one of two seminal 1997 cases on assisted suicide, the other being Vacco v. Quill.
Washington challenged a law in that state criminalizing assisting in someone’s suicide. They argued that “aid in dying” was a constitutionally protected right.
Noting that “for over 700 years, the Anglo-American common-law tradition has punished or otherwise disapproved of both suicide and assisting suicide,” then-Chief Justice William Rehnquist wrote that it was not a constitutionally protected right to assist someone in their suicide.
The court did, however, say that states could experiment with their own laws. And Oregon was the first to do that.
The results? From 1997 through 2013, a total of 1,173 people received prescriptions for lethal drugs, and 752 of them have died from taking them under the Death with Dignity Act, according to the Oregon Health Authority.
The number of prescriptions has risen every year since 2004, when 60 were written, to reach 122 prescriptions last year. Advocates are also quick to point out that not everyone who receives the lethal medication takes it.
“It gives them the comfort — and that is the thing that I feel is so important,” said Fay Clayton, a founding shareholder of Chicago litigation boutique Robinson Curley & Clayton and a co-author of the Illinois draft bill available on the Hemlock of Illinois website.
“When they’re relieved of their anxiety, their quality of life goes up. They enjoy life knowing that if life gets unbearable, they have this solution that they are free to either use or not use.”
Assisted suicide looks very different in other places, and that plays into fears of a slippery slope among portions of the disability community.
In the Netherlands, 13,500 requests are made each year for euthanasia. In 2012, more than 4,000 died as a result, according to Petra de Jong, director of Right to Die Netherlands.
There, a far more expansive law allows, for instance, a doctor to prescribe lethal medication to a 30-year-old suffering from a mental illness, de Jong said.
“Why should they be denied euthanasia simply because they have a mental illness?” she asked, after lamenting that too few doctors prescribe the medication to patients who say they have lived a “completed life,” despite that being a legal reason to receive lethal medication.
In the United States, Gogol said, advocates to extend the right of aid-in-dying to the mentally ill are “very few and far between.”
“Different cultures are at different places. I would say, in terms of acceptance of death and understanding of these issues, obviously, the Netherlands is a bit further along,” he said.
“This is a new concept. It takes a lot of time. It takes a lot of discussion. But the experience with the laws in Oregon, Washington, etc., are the things that are showing the rest of us in the United States that the fears of a slippery slope are not real. And that’s important.”
‘Not Dead Yet’
But not everyone agrees the slope isn’t slippery, nor that Oregon is a blemish-free success story.
That includes Diane Coleman, president and CEO of Not Dead Yet and leader of its protests in Chicago. She started her organization in 1996 in response to Oregon’s referendum and, in the past, has publicly debated Humphry, the Hemlock Society founder.
Coleman points to doctor questionnaires in Oregon that indicate the most frequently mentioned “end-of-life concerns” by patients who requested assisted suicide. The answers were loss of autonomy (93 percent), decreasing ability to participate in activities that made life enjoyable (88.7 percent) and loss of dignity (73.2 percent). It should be noted that those are in addition to having a terminal illness.
“Those are issues that people go through when they acquire disabilities through accident, illness or aging,” Coleman said. “And we’re concerned that those issues are being treated as reasons not only for society to agree that, ‘Oh, your suicide is rational and acceptable, but we’ll even give you the means to carry it out.’”
She added: “We want equal suicide prevention as part of equal protection of the law, equal rights.”
Coleman points out that the National Hospice and Palliative Care Organization does not support the legalization of assisted suicide. Nor does the American Medical Association, which adopted in 1994 its current policy stance: “Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control and would pose serious societal risks.”
A number of medical associations do support it, including the American Public Health Association, which says it does not equate “aid-in-dying” with “assisted suicide.”
Coleman also said she believes physician-assisted suicide violates the Americans with Disabilities Act by creating a system “where some people get suicide prevention and others get suicide assistance, and the difference is your health and your disability status.”
“The stigma associated with age and disability and illness is, for many people, crushing,” she said. “But what the disability rights movement is really trying to say is (that) we need to address those needs (of the old, disabled and sick) and we need to resist the stigma and change the way society treats people. And that’s what we’re pushing for.”
For Coleman, allowing assisted suicide opens the door for the possibility that a disabled person who “feels like a burden” may be pressured to seek lethal medication.
Advocates for an Oregon-style bill say that criticism is misguided because of safeguards that limit the law to terminally ill patients who doctors agree will die within six months and who are competent to make a choice to “hasten their death.” Coleman counters that those safeguards are ineffective and could still result in abuse.
“No one is forced to do it,” said Khadine Bennett, a staff attorney and legislative counsel with the American Civil Liberties Union of Illinois, who helped write the draft bill.
“Nothing in the legislation targets folks who are elderly or disabled. But people focus in on that as a red herring that has nothing to do with the intent of the legislation or what it actually does.”
While there is vehement disagreement on taking a medication that causes death, both sides find no fault with a close relative known as “palliative sedation.”
Fully legal, palliative sedation is a request by a terminally ill patient who is in severe pain to be treated with sedatives and narcotics to the point of a near coma. It can cause a quicker death, but the intent is to treat pain and minimize suffering.
An Australian doctor who spoke at the movie theater conference said the acceptance of palliative sedation might provide a legal argument for aid-in-dying. The question would be whether it is the intent or the result of a doctor’s actions that are punishable.
Rodney Syme said he provides aid-in-dying measures, despite it being illegal in Australia, by arguing he’s providing palliative care.
“Effectively, what I’ve done is to challenge the authorities,” he said. “And if by provoking the law, the law does not respond, then the law is in disrepute. And a law in disrepute is an ass.”
Turning to the courts
Increasingly, death-with-dignity activists have taken to legal challenges. And they have found a more receptive ear in the courtroom.
Montana’s ruling, despite failing to adopt a wide constitutional protection for assisted suicide, extended protection to doctors who use the practice in that state in 2009.
The legal argument took a new tack in New Mexico.
Tucker — when she was legislative affairs director with Compassion and Choices, an advocacy group that the Hemlock Society merged with — filed a lawsuit there on behalf of two cancer doctors and a patient.
The lawsuit had two parts. One was a typical argument that the state’s constitution provided a right to aid in dying. The other was a statutory argument that challenged the law criminalizing assisted suicide.
The basic argument was that aid-in-dying — defined as providing medication that would hasten the death of a terminally ill patient — was not suicide but, rather, a form of medical treatment.
A New Mexico judge ruled that terminally ill, mentally competent patients have a fundamental right to aid in dying under the substantive due process clause of the state’s constitution. For the moment, the ruling protects doctors from prosecution in one New Mexico county. If affirmed on appeal, the ruling will impact the entire state.
“If decisions made in the shadow of one’s imminent death regarding how they and their loved ones will face that death are not fundamental and at the core of these constitutional guarantees, then what decisions are?” New Mexico 2nd District Judge Nan Nash wrote.
Any legislative push in Illinois will take time — not even the advocates dispute that.
For now, Gogol said he has four non-controversial points of advice to avoid the type of “bad deaths” that spurred his activism. He called them “the tenets of having a not-so-bad death.”
First, grant a “trusted loved one” medical power of attorney.
Second, have constant conversations with that person about what type of care you would and wouldn’t like near the end of life — no matter how difficult the discussion might feel at first.
“It’s actually a mercy to raise the conversation with loved ones,” he said. “They will tell you what they want if you ask.”
Third, recognize that aggressive medical care can be futile.
Which leads to No. 4: Take advantage of every aspect of palliative care available.
Gogol learned this from a personal experience when his 99-year-old father was in hospice care and, a week before he died, asked for morphine. Gogol’s mother warned him against it, fearing he might become addicted.
“My line is,” Gogol said, laughing, “if you’re near death, don’t worry about getting addicted to the pain meds.”