An Ethical Tightrope

Long before the doors of hearing room 4203 opened, the hallway outside was packed. People from across California crowded the fourth floor of the Capitol building in Sacramento, chatting in groups or pacing?antsy with anticipation?as they awaited the start of the meeting. The Senate Health Committee would consider several matters that March day, but nearly everyone had come for one reason: It was the first hearing on Senate Bill 128, a contentious piece of legislation that would give terminally ill Californians access to life-ending medication.

When the doors finally opened the crowd rushed in, quickly filling the lower level of the chamber and the balcony overhead. Mindful of its eager audience, the committee dashed through procedural business and on to the main event. Sen. Lois Wolk (D-Davis), who co-sponsored the bill, known as the End of Life Option Act, introduced it with a somber recollection of her mother's painful demise. "Death comes to all of us," she began. "We prefer not to think about it, but if we do, we might prefer to die in our sleep at a ripe old age." For many the reality is very different, she continued. "There can be an agonizing descent into physical and mental deterioration." Around the packed chamber, advocates in yellow T-shirts nodded in agreement, their "Support SB 128" signs resting at their feet, while red-shirted opponents sporting "No Assisted Suicide in California" buttons looked on. "It does not have to be this way," Wolk concluded. "It should not be this way."

A charged debate is playing out across California. Proponents argue that having the option to end one's life is a fundamental personal liberty. Equally impassioned opponents contend the law devalues human life, puts vulnerable people at risk for abuse, and places physicians squarely at odds with their most fundamental mandate?to do no harm. "It just stirs so much emotion," says Toni Broaddus, California campaign director for Compassion & Choices (formed in 1980 as the Hemlock Society), the leading national organization advocating for medical aid in dying. "Death is one of the last taboos in our society."

In the summer of 2010, the popular Bay Area legal recruiter Marty Africa learned her cancer had returned. Her doctors weren't optimistic. Africa, a founder and name partner of Major, Lindsey & Africa, had heard this before. When she was first diagnosed with breast cancer two decades earlier, she had been given a grim prognosis. This time the cancer had reached her bones, yet she still beat it back for another four years. Dogged as Africa was, when she saw that she wouldn't be able to hold out much longer, she began reminding those around her of a decision she'd made years before: She would die on her own terms.

"She always said, 'When it's time to go, I'm checking out. I've had a wonderful life, and I'm not going to stick around when I'm miserable,' " recalls Frederick C. Hertz, a close friend of Africa's and a Bay Area lawyer.

As the end of Marty Africa's life neared, she told her doctor what she'd been telling friends and family for years: When she was ready, she wanted to die quickly and quietly. When she and her husband, Stewart Levine, discussed this with the physician managing her pain, he assured them that palliative sedation was the best option. Levine admits that maybe he just heard what he wanted, but he remembers the doctor explaining that Africa would simply go to sleep. "We thought you went bye-bye, that was it."

After the treatment began, Levine and his family were left with a different reality: Though the drugs rendered Africa unconscious, she was very much alive. "I wouldn't call it a peaceful process," Levine says. It wasn't swift either. For several days they watched Africa gasp and make noises as her body slowly failed. "We couldn't understand why she wasn't dead yet," he says. "That's not what she wanted."

In many ways the care Africa got at the end of her life was exceptional. "His care was exquisite," Levine says of her last physician, "but he was operating within certain ethical and legal constraints." The doctor assuaged their fears of a prolonged and painful death by offering the only tool he had, but he spared them the gritty details?and those would have made all the difference. "We might have chosen Oregon or Switzerland," Levine says, "had we gotten a full picture."

Although California does not criminalize suicide (see In Re Joseph, 34 Cal. 3d 429, 433 (1983)), under state law it is a felony to deliberately help someone take their life. The statute has been on the books since 1874 (Cal. Penal Code § 401). Assisted suicide is also illegal in 44 other states and the District of Columbia.

But medical aid in dying is not a new issue. In A Merciful End: The Euthanasia Movement in Modern America, historian Ian Dowbiggin traces the roots of the movement back a century. He writes that burgeoning interest in the wake of World War II was overshadowed by the medical killings in Nazi Germany?which targeted some 100,000 disabled adults and children. By the 1960s, however, support was beginning to coalesce. In the years since, advocates have unified and split, organizations have formed and dissolved, and legalization campaigns have found varying degrees of success. But according to Dowbiggin, one fact holds: High-profile cases that put a human face on the issue have played the biggest role in propelling efforts forward.

Most recently, a young California woman with green eyes and a broad smile captivated audiences across the world with her story. Twenty-nine-year-old Brittany Maynard was diagnosed with a brain tumor on January 1 of last year and told she had less than six months to live. When she learned the details of her disease's progression, and the symptoms she could expect, Maynard opted to move to Oregon, where dying patients can legally get life-ending medication from their doctors. In her final months she advocated prominently on behalf of Compassion & Choices.

Gallup polls show a majority of Americans have supported physician-assisted euthanasia for terminally ill patients for the past 20 years. And since Maynard's death, legislators across the country have taken up or renewed efforts to pass laws allowing terminally ill patients to end their lives with prescribed drugs?27 states and Washington, D.C., have now made legislative moves. Maynard's former home state was among the first to jump in.

California's End of Life Option Act is modeled after Oregon's Death with Dignity Act, the first legislation of its kind in the country. The Oregon measure was put forward on a statewide ballot in 1994, and it barely passed with 51 percent of votes. Legal actions delayed implementation until October 1997. The following month voters soundly defeated a ballot initiative that would have repealed the act, and eventually the U.S. Supreme Court rejected challenges to it. (See Ore. Rev. Stat. §§ 127.800127.897; Gonzales v. Oregon, 546 U.S. 243 (2006).) Only two other states have enacted similar laws: Washington voters adopted one in 2008 (Wash. Rev. Code § 70.245), and Vermont's legislature passed the Patient Choice and Control at End of Life Act in 2013 (Vt. Stat. Ann., tit. 18, §§ 52815292). Courts in two more states have opened the way to medical aid in dying: The Montana Supreme Court paved the way by ruling that state law shields doctors from prosecution; and a decision in New Mexico (now on appeal) affirmed that terminally ill patients have a fundamental right to aid in dying under the state constitution and that doctors are protected from prosecution. (See Baxter v. State, 354 Mont. 234 (2009); Morris v. Brandenburg, No. D-202-CV 2012-02909 (N. Mex. Dist. Ct., 2d Jud. Dist. (Cnty. of Bernadillo) ruling issued Jan. 13, 2014).) California's bill, if approved, could make it the sixth state to allow the practice.

Opponents don't think that's likely to happen, looking at the failure of past efforts to land similar legislation. "We've beat this bill many times," says Marilyn Golden, a senior policy analyst with the Disability Rights Education & Defense Fund, who testified against SB 128. "This is going to be a long fight," she cautions, adding, "We've had long fights before on the same bill in this Legislature, so we expect to prevail eventually."

California voters rejected an aid-in-dying ballot initiative in 1992, and multiple legislative efforts collapsed between 1995 and 2007. The bills often failed in committee, as when, at a Senate Judiciary Committee hearing in 2006, then-Chairman Joe Dunn (D-Santa Ana) killed a bill two years in the making. "It was one of the most difficult votes I cast," recalls attorney Dunn, now in private practice. "It is a very, very difficult question, and one in which both sides of the debate are correct."

He finally decided there weren't sufficient protections in the bill, as written, to prevent abuses stemming from economic pressures within the health insurance industry. As more and more states adopted such laws, he feared, insurers would become unable to resist the potential savings and begin gently encouraging dying patients to end their lives early. "There can be subtle and sophisticated ways to market that decision to a patient or his family," Dunn warns.

In 2007 a similar bill passed committee but it couldn't win approval in the full Assembly. "[Right-to-die proponents] came up and went away," says Katie Short, an Ojai attorney who is vice president of legal affairs for the Napa-based Life Legal Defense Foundation, which opposes legalizing aid in dying.

Things seemed different this time around, with SB 128. "Nothing has taken everyone by storm like this one," says Short.

Still, opposition from Republicans has been strong, some religious leaders consider the practice immoral, and some disability-rights advocates warn about the potential for abuse.

"The bill protects doctors and hospitals, not patients," Golden warns. "Its vision of assisted suicide will operate properly where there are no health care disparities, and where all families are happy. It presumes everyone is financially secure, has an equal opportunity to health insurance, and has no one around them working against their interests. This is not the reality for a vast number of Californians. This is a bill for the few, not the many."

Last year California Democrats rallied behind the issue, officially adding "death with dignity" to the party platform. And another key facet of past opposition has stepped back: the medical establishment. In May the California Medical Association, which opposed past bills, became the first state medical association to officially take a neutral position on aid-in-dying legislation.

To Broaddus of Compassion & Choices, the change "represents a monumental shift because it is a break from the California Medical Association's historic opposition to the medical practice of aid in dying," she says. "We are seeing an enormous shift in thinking within the medical community that is helping create a pathway for end-of-life-options legislation in the state and throughout the nation."

"The fact that CMA has gone neutral on the legislation speaks volumes," says Dunn, who was CEO of the organization from 2006 to 2009. "That is clearly a huge change from ten years ago."

Of course, CMA's neutrality was a setback for SB 128 opponents. "We were shocked and very disappointed by the CMA decision, which is reprehensible and was apparently made for political reasons," the Disability Rights Education & Defense Fund's Golden said in an email to California Lawyer. "Fortunately, both the southern and northern California oncologist organizations have reaffirmed their strong opposition to an assisted suicide bill in any form, because of the many dangers it would pose, as well as doing harm to the doctor/patient relationship."

After Senator Wolk finished her introduction at the March Health Committee meeting, the bill's co-sponsor, Sen. Bill Monning (D-Carmel), went on to extol its many safeguards. Like Oregon's law, the former law professor explained, SB 128 would extend lethal medication only to terminally ill patients who have less than six months to live?as confirmed by two physicians. The patient must be of sound mind; must make two verbal requests at least 15 days apart and sign a written request in the presence of two witnesses; and is required to be the one to administer the medication. Under the proposed law, coercion is a felony, while the assisting physicians, pharmacists, and health care facilities are insulated from criminal liability. The bill would mandate the collection of data on assisted deaths for the public record, but it guards patient privacy. Finally, Monning said, SB 128 goes beyond Oregon's law by requiring that request forms be translated for the patient, if needed.

When the sponsors stepped down, testimony on the bill began. Supporters relied heavily on Oregon and Washington's experiences to show legalized aid in dying can be safe and effective, but the bulk of their testimony was based on emotional appeals and notions of personal freedom. Critics deployed emotional missiles too, but they sought to undermine confidence in the law through a series of well-honed attacks.

Committee members listened intently as Brittany Maynard's mother, Debbie Ziegler, spoke in a fragile voice about her daughter. Then Christy O'Donnell, a former lawyer and Los Angeles police sergeant, described in grim detail how terminal lung cancer will likely drown her in front of her 20-year-old daughter. Other advocates spoke, too: A retired Stanford oncologist made the case that the bill would improve end-of-life care for all Californians by encouraging open communication about the dying process among doctors, patients, and their families; a clergyman found defense for a "gentle death" in the words of St. Francis of Assisi.

The straightforward emotional appeal of those arguments gave way to talk of logistical and ethical hazards when the opposition took its turn. Warren Fong, president of the Medical Oncology Association of Southern California, questioned the safety of the oral medication that would be prescribed: Once dispensed, how could anyone be sure that patients would take it correctly and respond as expected?

If Oregon's official data offers any insight, complications from the medication are rare: Of 859 patients there who have taken the lethal prescriptions in the nearly 18 years since the law took effect, just 22 regurgitated the medication and 6 regained consciousness before finally dying.

However, Fong also warned that medication could easily fall into the wrong hands. In Oregon, he noted, patients have been known to hold on to the prescription for up to two years, and some never use it. "It's sitting in their medication cabinet, where it can be stolen, accidently used by someone else, or worse," he warned. "It could be given to an unwitting patient by a caregiver because he's tired of taking care of mom or is anxious to get his inheritance."

Oregon data confirms that less than two-thirds of patients in the state who obtained a lethal prescription there since the law passed have actually used it. The state has not, however, identified a single instance of misuse.

Fong's concerns are echoed by Washington attorney Margaret K. Dore, who has long worked in guardianships and probate. "The drugs used for assisted suicide in Oregon and Washington?secobarbital and pentobarbital (Nembutal)?are water soluble," she told California Lawyer, "such that they can be injected without consent, for example, to a sleeping person."

Others at the hearing pointed out that physicians are notoriously bad at predicting life expectancy, offering anecdotal evidence of people who'd lived many years?decades in some instances?beyond the time frame their doctors gave them. When doctors gave Oregon resident Jeanette Hall six months to a year to live, she asked for aid in dying. But her doctor resisted repeatedly until she gave up the notion. Fifteen years later, she's free of cancer and happy to be here. "It's great to be alive," she told a reporter for The Daily Signal news website. "I wouldn't be here if Dr. Stevens was a different type of doctor that just kept listening to [me]."

Dr. Aaron Kheriaty is director of the medical ethics program at the UC Irvine School of Medicine. He testified that the law could result in unequal treatment for people with mental illnesses. "Assisted suicide is discriminatory," he told the committee, explaining that under the law he would be forced to intervene to save the life of a depressed and suicidal patient like Robin Williams, but could assist a patient facing imminent physical decline, like Brittany Maynard, in taking her own life. Kheriaty said the two approaches are fundamentally incompatible. "They can't coexist within medicine and mental health care." His prediction is that restrictions on who is eligible to receive life-ending medication will be relaxed. Before long, Kheriaty warned, the legal climate will be just like Belgium and the Netherlands, where the option of assisted suicide isn't limited to the physically dying.

A related argument used against aid-in-dying legislation is that suicide rates in Oregon have increased since 2000. Attorney Dore refers to the phenomenon as "suicide contagion." "It is well known that suicide is contagious," she wrote in a memo on SB 128 to the Senate Appropriations Committee. "A famous example is Marilyn Monroe. Her widely reported suicide [in 1962] was followed by 'a spate of suicides.' "

Oregon does have an exceptionally high suicide rate?around 17 per 100,000 people versus a national average of 13 per 100,000. However, this was the case long before the state's Death with Dignity Act took effect. Around 1999, shortly after implementation, rates did climb in Oregon, but they shot up around the country, too. Oregon's trend continually mirrors the national trend, just at a higher level.

On behalf of the formidable segment of the disability community that has staunchly opposed end-of-life legislation around the country, policy analyst Golden delivered a catalogue of concerns about abuse. "Where assisted suicide is legal, some people's lives will be ended without their consent through mistakes and abuse," she warned. "For one thing, it's a deadly mix to combine our broken, profit-driven health care system and assisted suicide, which would instantly become the cheapest treatment." This might be especially pernicious for California's Latinos and blacks, Golden said, because they are already disproportionately disadvantaged in health care coverage.

Oregon's population of whites (78 percent) is twice as high as California's. But Oregon's data shows that 97 percent of patients who die from taking lethal medication there are white. Forty-six percent have college degrees and 60 percent have private health insurance.

In Switzerland, where assisted suicide has long been legal, a study published last year examined concerns that disadvantaged or vulnerable people were more likely to die this way. The study, published in the International Journal of Epidemiology, found that the practice was "more likely in women and those in situations that may indicate greater vulnerability such as living alone or being divorced, but also more common in people with higher education and higher socio-economic position."

Evidence of abuse in assisted-suicide cases is largely anecdotal and often contested, making it difficult to winnow out the facts. Golden and others say this lack of information is a major flaw in the current laws. The crucial point, they say, is not what the data from Oregon and other places shows, but what it doesn't. Golden explained to the committee, "The data shows no abuses because the system is not set up to find abuses."

Not all supporters of physician-assisted suicide agree that statutory change is the best way to make the option available. "California has been around the legislative-attempt block numerous times," says Kathryn L. Tucker, executive director of the Disability Rights Legal Center in Los Angeles, which advocates for aid in dying. "Legislation is unlikely to succeed." For her, SB 128 is too heavy an intrusion into the medical profession anyway. "A physician who feels very burdened by the statutory scheme may not want to practice that because it adds to their already very busy day," Tucker says. But strategic litigation, she believes, could help "move this practice into the [medical] mainstream."

In February, Tucker and San Francisco pro bono co-counsel Nicholas van Aelstyne of Beveridge & Diamond filed suit against the state on behalf of three physicians and three cancer patients. (Brody v. Harris, No. CGC-15-544086 (San Francisco Super. Ct.).) Dan Swangard, a 48-year-old doctor, is one of these patients. He was diagnosed with a rare cancer in 2013, and though it's now in remission after successful treatment, Swangard knows there's a strong chance the disease will roar back. "It's very real for me," he told NPR. "This [aid in dying] could be my own issue a year from now." Swangard says he isn't sure he would take lethal medication even if he chose to obtain it, but he wants the option. That's a big part of why he joined the lawsuit.

Tucker believes "it's an essential civil right to be able to make autonomous decisions about your own body and your own life. I'm privileged to do the work," she says.

The California case offers the court two theories: first, that the statute criminalizing assisted suicide (Calif. Penal Code § 401) does not apply to doctors treating terminal patients. "Growing legal, mental health, and medical professional consensus recognizes a fundamental difference between suicide and aid in dying," the second amended complaint states. Although the same argument succeeded in the Baxter v. State suit in Montana, which Tucker worked on, Life Legal Defense's Short notes that a similar argument failed in Connecticut (Blick v. Office of the Div. of Crim. Justice, 2010 WL 2817256 (Conn. Super. Ct., Hartford J.D.)).

The second argument Tucker presents in Brody is constitutional: that the state's guarantee of privacy extends to this issue, as a New Mexico court held in the Morris v. Brandenburg case she helped litigate. "The California Supreme Court has observed that 'there is a body of law evolving that appears to respect a person's choice of how and when to die.' (People v. Deere, 41 Cal. 3d 353 (1985))," the complaint states. It continues: "This Court is called upon to clarify the rights of mentally competent, terminally ill patients regarding just how much suffering they must endure before death arrives, and the intertwined right of physicians to respect, in the exercise of their professional judgment, the wishes of [such] patients who request aid in dying."

In another California case filed this spring, Compassion & Choices sued for declaratory relief from enforcement of section 401 on behalf of Christy O'Donnell, the lung cancer patient who testified at the March hearing, and two others. (Donorovich-Odonnell v. Harris, No. 37-2015000016404-CU-CR-CTL (San Diego Super. Ct. filed May 15, 2015).) John Kappos, a Newport Beachbased partner at O'Melveny & Myers, is working with the organization on behalf of the plaintiffs.

For Life Legal Defense's Short, these efforts are an "invitation for judicial activism," adding, "I do wonder how vigorously [Attorney General Harris] will defend the current law from these challenges because she is a Democrat with obvious political ambitions." Such a divisive issue belongs in the hands of the Legislature, Short argues.

Jon B. Eisenberg, an Oakland attorney with Horvitz & Levy who sits on the advisory board for the Northern California chapter of Compassion & Choices, says well-established legal underpinnings support the right to die, characterized more broadly as the right to refuse medical treatment. He spent a year working with Michael Schiavo's legal team in the protracted fight to have his wife, Terri Schiavo, taken off life support in Florida. Eisenberg points to a 25-year-old case in which the U.S. Supreme Court placed the right to refuse medical treatment within the Fourteenth Amendment's guarantee of the right to due process. (Cruzan v. Director, Missouri Department of Public Health, 497 U.S. 261 (1990).) Chief Justice William Rehnquist's majority opinion called it the right of "bodily integrity"?though others before and after have called it a right of "personal autonomy." And courts aren't the only authority: "Since Cruzan," Eisenberg says, "every state in the country has adopted legislation regulating the exercise of the right to refuse medical treatment, including provisions for executing advance directives."

He counsels advocates, "If you feel you can effectively travel both roads, you should."

When testimony concluded before the Health Committee, supporters of SB 128 lined up for public comment, wrapping around the hearing room in a yellow band of T-shirts. One by one they offered brief justifications. Some looked ahead to their own deaths in the distant future; others who were terminally ill demanded a solution sooner. Many spoke up in honor of relatives who had died in pain, or chosen starvation or violent suicide over prolonged misery. Some spoke for dying loved ones, including a woman who said she and her terminally ill mother had discussed poisoning by oleander if they could not get life-ending medication.

A contingent of opponents took to the microphone next, airing their fears of abuse, speaking from personal experience about terminal diagnoses proved wrong, and invoking religion to stress the value of finding meaning through suffering. "Just to remind you," one man said, eyeing the senators fiercely, "you're not God."

In the end the committee voted in favor of the bill, 62, moving it forward to the Judiciary Committee. By late May SB 128 had cleared the Judiciary and Appropriations committees and survived a full Senate vote?the first bill of its kind to emerge from either house.

But the bill has not fared so well in the Assembly. Last month, it didn't have enough support to make it out of that chamber's Health Committee. Consequently, Senators Wolk and Monning and Assemblymember Susan Eggman (D-Stockton) decided to delay the hearing, saying in a statement, "We are continuing to work with Committee members to ensure that when the bill is presented, they are comfortable with the measure."

According to the Los Angeles Times, a group of Democratic assembly members, many representing Latino districts, withheld their support after heavy lobbying from the Catholic Church. Lorena Gonzalez (D-San Diego), a member of the Health Committee, said in a statement after the bill was withdrawn, "I'm uncomfortable based on the experiences of my mom who died of terminal illness, I'm uncomfortable based on the impact this will have on poor people in a health care system that cuts corners in the name of costs, and I'm uncomfortable with the way suicide could be viewed across society, not just the terminally ill."

Short, of the Life Legal Defense Foundation, believes that what happened to SB 128 in the Assembly shows that the longer people think about legalizing physician-assisted suicide, the more doubts they have about it. "People respond from the gut to Brittany Maynard's story," says Short. "But once the emotion fades away, they start to pay more attention to the arguments about the dangers [physician-assisted suicide] poses."

Director Tucker of the Disability Rights Legal Center called SB 128 an "outdated approach, seeking to replicate a measure adopted 21 years ago in Oregon." In her view, litigation would be more effective than legislation. For example, if the plaintiffs prevail in Brody, Tucker says, "the same open practice of aid in dying will emerge in California ... [without] burdensome requirements for collecting and reporting data."

But Broaddus of Compassion & Choices says, "We are not done in the Assembly yet. The Legislature should have a full, public, and informed debate on the issue." Broaddus says her organization is also looking at other options, such as a ballot initiative, and the Donorovich-Odonnell lawsuit pending in San Diego.

Meanwhile, Californians must wait until next year to see how far SB 128 will get.

Vanessa Rancaño is a freelance journalist based in Oakland.

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