Nearly two weeks after Brittany Maynard used Oregon’s Death with Dignity Act to end her life at the age of 29, the New Jersey General Assembly passed a similar aid in dying bill that gives terminally ill patients the right to help in precipitating their death. The bill’s success was likely indicative of the way Maynard’s advocacy has shaped the conversation around aid in dying laws, particularly in response to the antagonistic rhetoric espoused by the anti-choice and religious right contingents.
Bringing the Debate to the Forefront
On Thursday, November 13, the state assembly passed bill A2270, known as the Aid in Dying for the Terminally Ill Act, in a 41-31 vote. Much like the Oregon act, which was implemented in 1997, A2270 grants qualified patients the legal authority to, as the legislation reads, “self-administer medication to end life in [a] humane and dignified manner.” A2270 now awaits action from the senate, which has not given any indication as to when it will vote on the bill or whether it will pass it. Gov. Chris Christie, for his part, has publicly opposed it.
This is the second attempt to pass A2270 this year—in June, the lack of support prompted Democrats to pull it from the voting schedule. This time around, though, Assembly member John J. Burzichelli (D-Third District), who introduced A2270 in February following his sister’s 2013 death from lung cancer, felt that Maynard’s very public story helped push the bill’s popularity. “More people are interested in talking about [the bill] because it drew so much attention to the issue,” Burzichelli told NJ.com.
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Before she died on November 1, Maynard had released a YouTube video detailing her decision to relocate to Oregon from California and use the state’s Death with Dignity Act. She teamed up with Compassion & Choices, a national end-of-life advocacy group, to establish the Brittany Maynard Fund and help urge other states to pass aid in dying legislation.
In a November 13 statement regarding the New Jersey bill after it passed, Compassion & Choices President Barbara Coombs Lee said of Maynard, “Brittany called on our nation to reform laws so others won’t have to move to a Dignity state for comfort and control in their dying. We’re honored to carry on her name.” Compassion & Choices declined to be interviewed for this article.
In a little more than a month, Maynard helped propel into the national spotlight a conversation that has primarily existed for decades only among those people directly involved with “death with dignity” advocacy or opposition. Her story landed features in People, USA Today, NBC News, CBS News, US Magazine, and other widely read media outlets, reaching millions of households and opening up dialogue about this human rights issue.
But Maynard’s story hasn’t only amplified the general debate. She has also drawn in “a younger crowd to think about death in a way that they haven’t been faced with before,” said Peg Sandeen, PhD, MSW, executive director of the Death with Dignity National Center in Oregon.
One major issue that faces the “death with dignity” movement, Sandeen reports, is its essential foundation: the matter of death itself. Deeply rooted in society, she said, is a “push to stay young” and “be happy and healthy and fit.” That youth culture makes it difficult to challenge the concept of death and how we choose to die.
“We have a death taboo in our county. People don’t like to talk about death,” Sandeen told Rewire.
And prior to Maynard, the arguable face of the movement was the late Dr. Jack Kevorkian—a Michigan physician and “death with dignity” advocate who spent eight years in prison after a 1999 second-degree murder conviction for his role in aiding terminally ill patients in dying. He, said Sandeen, is not frequently considered a “compelling character.”
But, Sandeen continued about Maynard, “suddenly you have this beautiful young woman who has had a tragedy in her life and that’s the face that younger Americans are experiencing now and associating with Death with Dignity.”
Even before Maynard’s campaign, research showed that the strongest public support for the right to aid in dying was among people younger than 50 years old. According to a much-cited 2013 Pew Research Center survey, which is part of a larger project on end-of-life care, 65 percent of people ages 18 to 49 believe it’s morally justified to end one’s life when the suffering from pain is “too great” and improvement is bleak, while 58 percent in that age group believe the same when the person has an incurable disease. Those numbers drop only by two and one percentage points, respectively, for people between 50 and 64 years old.
However, while public polling suggests young people support aid in dying at “very, very high levels,” there is still a disconnect in how it is perceived in relevance to them, Sandeen said.
“They don’t necessarily think the issue is salient or important to them,” she told Rewire.
But Maynard’s candor and amenability, she continues, spoke to a segment of the population that, while supportive, has never taken much of a public stance—whether through advocacy or dialogue—on the issue. Though it is difficult to say how much of a tangible role youths played in New Jersey, especially as the bill sits in limbo, the increase in young attention may prove to be beneficial in terms of passing Death with Dignity laws in other states too. “It would be interesting to see how that plays out in the future,” Sandeen told Rewire. “I think it’s going to be very positive in pushing the movement forward.”
Behind the Opposition
Any newly inspired advocates, however, will likely run up against the same kinds of opponents that their predecessors have been facing for decades. In addition to Oregon, Vermont and Washington have similar Death with Dignity laws on the books. In 2009, the Montana Supreme Court ruled in Baxter v. Montana that terminally ill patients have the legal right to aid in dying per the state’s “constitutional rights of individual privacy and human dignity.” Politicians in Pennsylvania and Wyoming, too, plan to reintroduce a Death with Dignity Act early next year. But where there has been progress in these states, there has also been ample pushback—much of it from the same camps that oppose other laws preserving bodily autonomy, such as abortion rights.
As reported by USA Today, the public resistance against aid in dying generally rests on the beliefs that ending your life is morally wrong, that physicians must do “everything” to either save a patient’s life or provide palliative care, or that these laws create a “slippery slope” where the elderly and people with disabilities are abused and coerced into ending their lives.
Though these first two arguments are a matter of opinion, there is no supporting evidence for this last claim, said both Sandeen and Ed Gogol, president of Hemlock of Illinois, a national aid in dying advocacy group. According to Oregon’s 2010 report on its law, nearly 93 percent of those who used the state’s Death with Dignity law that year were enrolled in hospice care at their time of death. Similarly, per Washington state’s own report, 84 percent of those who used its law were enrolled in hospice in 2010, showing that the majority of “death with dignity” patients had been medically determined to be at the end of their life.
Both reports show that around 78 percent of patients who used either state law had cancer, and around 90-to-93 percent worried about loss of autonomy as they grew sicker. Neither report, Sandeen said, shows any evidence of abuse.
The existing laws themselves also safeguard against coercion, the experts say—as would New Jersey’s new bill. Each requires patients to be terminally ill with six months or less left to live, consult with two doctors—an attending physician and a consulting physician—make at least three requests to use the law, and undergo a waiting period.
“It’s not an impulsive decision,” Gogol told Rewire about choosing to use aid in dying laws. “By making this legal and bringing it out in the open, you’re strengthening protections against coercion.”
Gogol’s group has drafted its own aid in dying legislation for its home state, the “Illinois Patient Choices at End of Life Act,” similar to Oregon’s bill. The group hopes to mount a legislative campaign to get it passed within the next few years.
In the process of doing so, it will likely have to overcome resistance from one of the major groups that have opposed Death with Dignity laws in the past. For example, anti-choice individuals and groups, including the National Right to Life and its state offshoots, have consistently worked to drum up support against these bills through political action alerts, lobbying, advertisements, social media activism, and communication strategies like well-placed op-eds in large media outlets.
However, Sandeen says, anti-choice groups are not the only members of the opposition movement. They also frequently work in tandem with organizations on the religious right to roadblock Death with Dignity laws. Most recently, that partnership was evident in the member list of the so-called New Jersey Alliance Against Doctor-Prescribed Suicide, which fought hard against A2270: The New Jersey Right to Life and International Life Services are listed alongside New Jersey Catholic Conference and the Christian Medical and Dental Association on that alliance’s website.
This tag team, of course, is nothing new—both ideological factions have ties to the defeat of various pro-choice legislation and the passage of dangerous anti-choice bills throughout the country. But while anti-choice groups do much of the legwork in terms of opposition to Death with Dignity laws, groups linked to the Catholic Church in particular tend to pay the bill, advocates say.
“In terms of opposing Death with Dignity, we do see anti-choice voices [and] anti-choice lawyers showing up, but we don’t see them making the $250,000 donations, the half-a-million dollar donations to anti-Death with Dignity campaigns,” Sandeen told Rewire. “Those big institutional donations are coming from the Catholic Church.”
Sandeen points to the 2012 Death with Dignity initiative in Massachusetts as a demonstration of this financial stronghold. In her estimation, Sandeen claimed that “60 to 70 percent” of opposition funding to the ballot question, known as Question 2, came from the Catholic Church. According to data compiled by Sandeen, Catholic-affiliated groups including hospitals and dioceses donated more than $3,432,800 of the roughly $5,503,626 reportedly given to the opposition. Records kept by the Massachusetts Office of Campaign & Political Finance show both Boston Catholic Television Center, Inc. and St. John’s Seminary Corporation contributed a total of $1 million each. The ballot initiative was defeated that year.
This is a part of a larger behavior of political spending for the Catholic Church across the country. As reported in former Death with Dignity National Center Director Eli Stusman’s 2004 book, Physician-Assisted Dying: The Case for Palliative Care & Patient Choice, the Catholic Church donated about $9,050,000 in total to campaigns mounted in Washington, California, Oregon, Michigan, and Maine throughout the 1990s.
Whether this intensive funding strategy has had an effect is unclear, but public polling may provide a clue. According to Pew, in 1990, 73 percent of people believed patients should be allowed to die, while only 66 percent felt that way in 2013. In contrast, Americans’ view on whether “everything possible” should be done to save a patient’s life “in all circumstances” increased by 16 points between those years—from 15 to 31 percent.
The Archdiocese of Boston and CatholicTV did not return multiple requests for comment.
The Vatican, however, has publicly condemned Maynard’s decision to die as “reprehensible” and the overall death with dignity movement “a sin against God the Creator.” Maynard’s mother, Debbie Ziegler, recently wrote a letter beating back against those comments, defending her daughter’s choice.
Meanwhile, in New Jersey, the impact of the religious right was largely shown through campaign contributions, as was that of anti-choice groups. Rewire was able to identity at least ten assembly members among those who voted “no” on bill A2270 who received financial support from Princeton Public Affairs, the lobbying firm hired in 2013 by the New Jersey Catholic Conference, a vocal opponent against A2270 and New Jersey Alliance Against Doctor-Prescribed Suicide member. The majority of PPA contributions were made during the 2013 statewide election season.
Among those who received money from Princeton Public Affairs, one also received campaign contributions from the anti-choice NJ Right to Life PAC, also affiliated with the alliance: Michael Carroll (R-25th District). Records list Donna M. Simon (R-16th District), meanwhile, as receiving funds from the NJ “Right to Live” PAC, which shares an address with NJ Right to Life. The anti-choice PAC also contributed to Assembly Anthony M. Bucco’s (R-25th District) campaign, although he did not receive funds from Princeton Public Affairs, and thanked Assemblyman Jay Webber (R-26th District) and Assemblyman Robert Auth (R-39th District) for their “no” votes.
The New Jersey Alliance Against Doctor-Prescribed Suicide did not return requests for comment.
Language plays a heavy role in how anti-choice and religious groups frame its condemnation of aid in dying. Many of the think-pieces and op-eds decrying Maynard’s public choice or the New Jersey used scare words like “suicide,” “physician-assisted suicide,” and “euthanasia”; many anti-aid in dying groups not only use those words in their literature on the issue, but have them directly in their names.
Opponents of death with dignity have “learned the language of suicide is very powerful,” said Sandeen. “If you call it ‘suicide,’ that’s the way to turn the average voter off on our issue,” she told Rewire.
Even the Pew Research Center, which is a billed as a “nonpartisan fact tank,” uses the language of “suicide” when polling about end-of-life care and decisions.
But to use those words to describe what is essentially “end-of life care” is iniquitous, said Gogol, both from an ethical and legal point of view.
“Doctor-assisted suicide” is also a misnomer, said Gogol, as doctors don’t actually assist under Death with Dignity legislation. Rather, the physicians who consult with terminally ill patient’s act as “the gatekeeper” because their ultimate role is only to determine a patient’s qualification under the law and to prescribe the medication—but not to administer it, he said.
“Fundamentally, it’s still an act you do yourself,” Gogol told Rewire.
Since Maynard has gone public, there has been little discussion about the intersection of “death with dignity” and feminism. Yet, agreed Sandeen and Gogol, both movements are deeply intertwined in doctrine and opposition because of what’s at its core: choice.
“The essential component of a civilized society is the right to control your own body,” Gogol told Rewire. “It’s exactly analogous.”
Ultimately, the experts say, having the legal right to choose when and how you die when you’re terminally ill is akin to having the legal right to control one’s reproductive choices—and when and how to build a family. Considering this similarity, they say, aid in dying and broader end in life care should be a banner picked up by the feminist movement.
Sandeen, for her part, also thinks of aid in dying in broader terms of who it affects in terms of gender roles. “I sometimes think of Death with Dignity as a profoundly women’s issue because women become caregivers in the family so frequently,” said Sandeen, who was caregiver to her late husband, who in 1993 passed away from AIDS at the age of 33. “It’s certainly about choice.”
Both Sandeen and Gogol do admittedly support a person’s “desire to oppose” aid in dying. But, they say, that individual choice becomes harmful when it collectively infringes upon the liberties of terminally ill patients through legislative or voter actions that prohibit the legislation of aid in dying.
“This is a choice that should be available to people if their suffering becomes intolerable,” Gogol tells Rewire. “If you think you would never want to make that choice for yourself, that’s more power to you.”
“But,” he added, “you shouldn’t try to coerce anybody else to not have that choice.”