In passing

Physician assisted suicide, aid in dying, death with dignity: the words vary depending on who’s addressing the issue, but the debate at hand—whether or not a person should have the choice to use medication to end his or her own life when faced with terminal illness—is a contentious one, regardless of the language used. And it’s been heating up in states across the country for years.

More than two dozen state legislatures have considered aid-in-dying measures this year. In Massachusetts, two such bills were slated for discussion on Sept. 26. In Pennsylvania, Wisconsin and Michigan—whose legislatures adjourn on New Year’s Eve—similar measures have sat for months, unaddressed by the legislative committees to which they’ve been assigned. And in 24 states, Nevada included, aid-in-dying legislation was introduced but failed outright after being tabled in committee, withdrawn or voted down.

Senate Bill 261 was Sen. David Parks’ second attempt at passing aid-in-dying legislation in Nevada. His first attempt—S.B. 336, introduced during the 2015 session—failed early, after missing a committee deadline when the Senate Health and Human Services committee chair declined to schedule a hearing for it. This year, the measure passed the Senate in an 11-10 vote before stalling in the Assembly Health and Human Services committee.

Committee hearings on S.B. 261 in May were packed with people who came to testify in favor of or opposition to aid in dying. And, as is often the case when Nevada takes up high-profile, national issues—think gun control, marriage equality, reproductive rights—many of those who came to speak were not, in fact, Nevadans at all.

Representatives from interest groups on both sides of the debate turned up to testify alongside Nevadans, bringing with them the kind of well-rehearsed talking points and carefully chosen statistics upon which their campaigns are built (and the national debate remains, inevitably, focused). From arguments in favor of personal autonomy to concerns about coerced suicide—the main talking points on both sides are emotionally charged. And it’s no wonder. Death is an emotional topic, at once personal and universal.

Aid in dying may be off the table in Nevada for now, but it won’t be for long. The Nevada Legislature reconvenes in 2019, and Sen. Parks has confirmed that, when it does, aid in dying will be up for deliberation again.

Several legislators who voted against S.B. 261 on the senate floor said their decisions were rooted in a lack of information and understanding of the issue. Among them was Sen. Mo Denis, who co-sponsored the bill but later voted against it.

“I’ve had family members—my mom and others—that have passed away, that had cancer and other things,” Denis said in a recent phone interview. “I thought it was important enough an issue that we should have that discussion. … I tried to follow the discussion that they had in committee, talked to some of the folks that were there.”

In the end, Denis said, he simply wasn’t convinced this time around but is prepared to consider it again, next session.

“Yeah, I’m usually pretty open to doing that—unless there’s absolutely no reason whatsoever to spend time on it,” he said. “But I didn’t hear that with this. What I heard with this is that there are some different things going on. Some places have done it, and I think that perhaps there might be some additional information that could come forward.”

New information may be available in 2019. At the very least, fact sheets and testimonies will be updated to reflect the latest year’s figures from California, Colorado, Vermont, Oregon and Washington—the five states with established aid-in-dying laws. The underlying rationalizations driving people on both sides of the issue will, however, almost certainly remain the same. They’ve never really changed.

A quick examination of the ways each side used data, accurately and otherwise, to support their positions during 2017 will serve as a good model for those wondering what to expect the next time around. And an overview of the history of the aid-in-dying movement and its roots in Nevada may be of interest.

Many people have at least heard of the Hippocratic Oath, the ethical code attributed to the ancient Greek physician Hippocrates. These days, most graduating medical school students swear to some form it—promising to maintain patient privacy, to treat the infirm to the best of their abilities, and to teach the secrets of medicine to the next generation.

The Hippocratic school of medicine strictly forbade euthanasia. In his book Euthanasia and Physician-assisted Suicide: Killing or Caring? Dr. Michael Manning explains that the rise of Christianity, “with its view that human life is a trust from God, reinforced the views of the Hippocratic school,” and “by the twelfth through fifteenth centuries, it culminated in the near unanimity of medical opinion in opposing euthanasia.”

Yet today, only a small percentage of the oaths taken do. According to survey results published in the Journal of Clinical Ethics, by 1993, the number had fallen to around 14 percent.

And, in fact, the oath itself has gone through periods of disuse. According to Robert M. Veatch’s book Hippocratic, Religious and Secular Medical Ethics: The Points of Conflict, in 1928, 75 percent of medical schools surveyed in the U.S. and Canada reported using no oath at all.

Of course, the oath has never been the only thing standing in the way of people who desire medical assistance in their deaths. As the U.S. Supreme Court has reiterated in several of its written decisions concerning landmark aid-in-dying-related cases, because the common law tradition—which the American colonies largely adopted—has punished or disapproved of both suicide and assisted suicide for many hundreds of years, it was a nonissue for most of the country’s history. The court has also noted that most states have, at some point, had laws against both.

However, that’s not to say that there weren’t efforts to discuss and even legalize aid in dying historically. According to Dr. Ezekiel Emanuel, who has written extensively on the history of the issue, “Modern interest in euthanasia in the United States began in 1870, when a commentator, Samuel Williams, proposed to the Birmingham Speculative Club that euthanasia be permitted “in all cases of hopeless and painful illness” to bring about “a quick and painless death.”

Dr. Emanuel, who has maintained a stance against aid in dying, has written in both news articles and scholarly papers about how Williams’ proposal sparked debate among physicians in the United States and the U.K. and ultimately contributed to the consideration of a few euthanasia bills by state legislatures in the early 20th century. But political science researcher and author Howard Ball, in his latest book, pointed out that euthanasia was also “linked to the eugenics movement during the first decade of the 20th century,” when bills to legalize euthanasia were introduced and failed in both Ohio and Iowa.

The debate over aid in dying—and the public’s support of it—has ebbed and flowed over time. Gallup reports on its website that it began polling about euthanasia in 1947 and, at that time, 37 percent of Americans reported supporting it. Groups like the Euthanasia Society of America and the Voluntary Euthanasia Legalisation Society in the U.K. had already been in existence for more than a decade at that point, and the aid-in-dying issue might have continued to gain ground, had it not been for World War II. But, as Manning notes in his book, “the discovery of the Nazi death camps, and the recognition of the complicity of German physicians in the extermination camps quelled” discussions of euthanasia.

In the decades following World War II, the focus of the aid-in-dying debate shifted away from euthanasia toward more general patients’ rights. Even groups like the Euthanasia Society of America backed away from advocating “active” euthanasia. Many instead turned their attention toward right-to-die issues, lobbying for public education regarding things like advance directives and do not resuscitate orders.

It was about this time when Nevadans first took up the issue.

Archives of Nevada newspapers document an uptick in discussions of right-to-die issues in the state beginning in ’70s.

An August 1975 editorial in the Nevada State Journal noted that senior citizens had gathered a few weeks prior to discuss end-of-life issues—as well as a person’s right to die. The writer of the piece remarked that, “Many of the senior citizens in Carson City suggested registering a petition in court expressing a desire to die and that no extraordinary precautions be taken to prolong life.”

Two years later, in 1977, state Sen. Bill Raggio and Assemblymember Steve Coulter each sponsored bills to address the matter. As reported in the Reno Gazette-Journal in March of that year, the legislation was aimed at providing people with the opportunity “to order the withdrawal or withholding of life sustaining mechanical procedures when they serve no purpose except to artificially delay the moment of death.”

The state joined an additional seven others with so-called death-with-dignity laws in place, including California’s, upon which the language in several of the others was based.

Things quieted for a while with these measures in place, but in the early ’90s, the debate was again raging across the nation, with Jack Kevorkian, a.k.a. “Dr. Death,” dominating the conversation. In Nevada, the issues of death and dying came to the forefront again in the form of a study. The people who initiated it are involved in matters of medical ethics and patients’ rights in the state to this day.

Frankie Sue Del Papa became attorney general for the state in 1991. She and Dr. Barbara Thornton had previously worked together on a study concerning women’s issues in the state. According to Thornton, both she and Del Papa were eager to participate in a panel and study on death and dying in the hopes of coming to terms with their own mothers’ painful deaths.

“At that point, there was very little talk of physician assisted suicide,” Thornton said. “And that was not our issue. Our issue was telling people about hospice, how to talk to people, how to get people to not be afraid of death. It’s like death was in the closet. It was in the closet much more than sexual issues or anything. You just didn’t talk about death.”

But the task force did—bringing in medical experts from across the country to speak with them and the Nevadans who participated in their study.

“And we came out with a fascinating report that was well received, but we weren’t going to publish it or anything,” Thornton said. “But we were encouraged to publish it. We did. And then Frankie Sue was going to end the board and the study of death and dying. And so many people were opposed to that, that she kept it going.”

Around the same time, Thornton was teaching and studying death and dying issues at the university—when she heard about a grant from Robert Wood Johnson Foundation. The task force was one of four groups nationwide to receive the grant.

“With the backing of Robert Wood Johnson, we thought we were in great shape,” Thornton said. “And Bill Raggio was our backup in the senate in Nevada. His wife had died a painful death, and he’d had a lot of problems, so he was right there with us. And he got enough money from the legislature that, with the grant, we could establish a Nevada Center for Ethics and Health Policy.”

The Center remained open for many years at its location on the University of Nevada, Reno campus. But according to Thornton, it eventually just stopped receiving funding, from the grants, the state, the school.

But Thornton has since changed her thinking on end-of-life issues, coming to embrace aid in dying as an option.

In the end, it was both a belief in autonomy and a means to end pain and suffering that Thornton said motivated her to embrace the idea of aid in dying. After a career in medicine and ethics, she’d seen enough people resuscitated, only to be kept alive with machines, that she was ready to see policies change.

“In many cases, they weren’t conscious,” she said. “They weren’t anything. They were just alive as animals. Or not as animals—we don’t treat animals like that. … We love them and we keep them with us until they’re in pain. But when they’re in pain, we do something. And we do it kindly, and we do it lovingly. So I think it was the animal example that got me to realize that it wasn’t just enough to urge advance directives and have people learn more about death.”

Both she and Del Papa testified before the legislature on S.B. 261 earlier this year.

So did many, many other people. Overflow rooms were designated during committee hearings on the bill in both the senate and assembly. Committee members received dozens of pieces of written testimony concerning the bill, including testimony from national organizations in opposition and support of aid in dying.

But numbers produced by people on both sides of the argument seemed at times dubious. Some proponents claimed to know that a majority of physicians support aid-in-dying measures, though—in truth—the numbers vary widely by poll. Others asserted statistics about the percentage of dying patients with particular diseases who suffer from pain.

Hospitalist and board certified internal medicine specialist Dr. Brian Callister was among those who spoke in opposition to the bill. His list of talking points—which he discussed during a recent interview—is long. However, he said, the basic reason for his opposition is simple—in his opinion, improvements in palliative and end-of-life care have made it a nonissue:

“We have advanced so far in control of pain and symptoms … that we can look you in the eye and say, ’We can control your symptoms,’” Callister said. “Now, of course, there’s always going to be an exception. Nothing in medicine is a hundred percent, and nothing is zero. But, in general, for the vast majority of people—I tell patients that if a physician can’t control your pain and suffering, your symptoms at the end of life, you need to change doctors.”

Callister came to May’s legislative committee meetings prepared, with a host of concerns and statistics. Like many opponents, he said he worries about potential abuses and coercion when the drugs are taken at home without a physician present. He also has concerns about the reliability of doctors’ estimates of how long people have after terminal diagnoses, which he says are often wrong, and about the prospect that doctors might one day start actively recommending assisted suicide. Callister is also distressed by the frequency with which patients experience complications in taking the medicine. Trouble ingesting or regurgitating the medication has been documented in a total of 30 cases over the last 19 years in Oregon—which is just over five percent of cases for which that information is available.

In the end, though, one of Dr. Callister’s assertions stands out among the rest. He claims to have been contacted by two insurance company representatives offering aid in dying in lieu of lifesaving treatment for two separate patients seeking treatment at out-of-state-hospitals in California and Oregon, respectively.

His statement to the Senate Health and Human Services committee read in part:

“When I spoke with the insurance medical directors of the patients’ insurance companies by telephone … both … told me that they would approve coverage for either hospice care or assisted suicide but would not approve the lifesaving treatment option.”

And according to Callister, that’s what the treatments would have been. He said neither of the patients were terminal. It didn’t take long for Callister’s testimony to make national news. Other people’s claims of insurance companies offering aid in dying in lieu of treatment have gone viral in the past, but the stories of these people have turned out to be half-truths—cases in which aid-in-dying drugs were offered as one option among several, including palliative care, as well as cases in which people have asked about the drugs only to later claim they were offered up front.

Callister, who spoke with the Washington Times and Fox News’ Tucker Carlson, said he can’t reveal much information about the two cases for fear of potentially exposing the patients’ identities. “I can’t say anything that would potentially disclose or lead one to be able to find out the identity of the patient,” he told the RN&R. “Now, the other problem is that I can’t get more specific on that. I’ll put it to you this way—I would love to get a HIPAA release from both of those patients. Let’s just say it’s not possible.”

But Sen. Parks, the bill’s sponsor, said he thinks Callister has taken the wrong approach.

“I would say that I believe that he has an obligation to file a report of wrongdoing on the part of the insurance companies,” Parks said. “So, I think that he was negligent by virtue of the fact that he said he had these conversations; however, he couldn’t show any verification that he had such conversations or that such documentation existed, that this is what the insurance companies were doing. As a doctor, he has the obligation of reporting those insurance companies to the authorities for their investigation and review. So, I think he’s really off the mark.”

Parks said he’ll be watching the 2018 legislative session in Colorado to see if legislators there make any changes to their new law that could strengthen the measure.

“But, for the most part, I’ve requested it to be resubmitted in the form that it’s currently in,” he said, adding that there’s a chance he’ll pursue the Nevada initiative petition process instead.