This report originally appeared in the March 2011 issue of DOTmed Business News

At the Sundance Festival this year, the winner of the Grand Jury Prize for documentaries is not what you would call life-affirming. Apparently, it opens with a patient dying on camera after taking a lethal dose of barbiturates. The film, “How to Die in Oregon,” directed by Peter D. Richardson, follows patients as they choose to participate with Oregon’s controversial Death with Dignity Act.

This act, now in its 13th year, lets patients whom doctors believe only have six months or less to live, obtain a prescription for lethal drugs. It survived two ballot measures in the state, the final time in late 1997, after unsuccessful attempts by the federal government to block it.

As the act enters its teens, Oregon is no longer alone. An almost identical law was passed in Washington in 2008. And a 2009 ruling by the Montana Supreme Court, Baxter v. Montana, found that state’s laws let patients determine their end-of-life care – including opting for, in the preferred parlance out West, “aid in dying.”

There is now more than a decade of data on Death with Dignity for researchers to draw on. And the numbers tell an interesting story — not a story most would have expected when the law passed. Overall, the rate of participation has been somewhat low, about 21 out of every 10,000 deaths, according to the Oregon Health Department, which is required under the act to publish a yearly account of DWDA deaths reported to them by doctors.

As of January, about 525 have died under the act during its first 12 years, the state said. In 2010, the most recent year for which data are available, 65 died after ingesting lethal medication.

However, more people get prescriptions than ever use them – for the most recent years, it’s 40 percent more. Last year, 96 scripts were written for those 65 deaths.

Intriguingly, doctor participation is also somewhat low. In 2007, there were 85 prescriptions, but only about 45 prescribing doctors. Many physicians who participate are believed to be recommended by Compassion & Choices, an advocacy group that connects patients with doctors willing to prescribe the drugs. The Patients Rights Council, a pro-life group, said published reports suggest it sees about 75 to 90 percent of all aid-in-dying patients.

“Why are medical professionals slow to adapt to Death with Dignity Laws?” asked Melissa Barber, a spokeswoman for Death with Dignity, an Oregon-based pro-DWDA organization, on a blog last fall.

Barber speculates that it’s a matter of outreach and education, pointing out the low rate of involvement the first year lethal prescriptions were available – there were only 16 reported DWDA deaths.

“In Oregon, there weren't fewer terminally ill patients nor fewer of these patients wishing to control the end of their lives in 1998,” she wrote. “Rather, there was a slow rate of learning about and understanding the law by patients and physicians.”

But will outreach and education swell the ranks of participating physicians, or are there fundamental obstacles to doctors’ involvement?

The hospice movement
The relationship to the DWDA with the entire medical community, and not just physicians, has been curious. One of the most striking findings is that hospice involvement has been modest.

Although, according to the state, a full 88 percent of patients dying under the DWDA are enrolled in hospice care, a study by the Hastings Center, a bioethics research foundation, found hospice participation was fairly mixed.

“When you ask the individual hospices, they are all over the map,” Courtney S. Campbell, the study co-author and a professor of religion and culture with Oregon State University in Corvallis, tells DOTmed News. “That was a little bit surprising. We knew that religiously affiliated hospices, primarily in the Catholic tradition and the [Seventh Day] Adventist tradition, [would not participate], which is their right under the law, but there were others that were just not willing to provide staff support or referrals.”

About one quarter of hospitals don’t participate at all according to the report, released last year and prepared by Campbell with Jessica Cox. And only 9 percent of hospices fully participate – meaning they discuss the issue with their patients and refer them to Compassion & Choices. (However, hospices almost never let the institution’s physician get involved with the actual prescribing themselves).

Nonetheless, the Oregon Hospice Association disputes what counts as “participation.”

“We take exception to his definition,” Deborah Whiting Jaques, CEO of the association, tells DOTmed News. “The definition that the Courtney camp used in his study for ‘participation’ is a pretty limited use of the word. What the Oregon Hospice Association knows is that the vast majority of hospices do participate in the Death with Dignity Act, in that hospices refer patients to Compassion and Choices,” she says.

“If you look at 52 hospices in the state of Oregon, and 65 deaths that occur [under the act each year], for a hospice to have specific experience about dealing with Death with Dignity Act patients – certainly Compassion & Choices has more direct experience helping people through the Death with Dignity process.”

How you say the thing
Also curious is the role language plays in this issue. What do you call the action of terminally ill patients taking lethal drugs prescribed by their doctors? Physician-assisted suicide? Physician-assisted death? Aid in dying? When contacted by DOTmed News, Compassion & Choices provided a fact sheet, “Language Matters,” which said that DWDA deaths were not “suicide” as the patients were dying anyway, and that the label “suicide” is hurtful and pejorative.

“They want to use the more neutral language because they do not view this as a choice that should be subjected to moral scrutiny, let alone government oversight,” Campbell says. “It’s a matter of patient self-determination and basically others ought to stay out.”

In fact, where a hospice fell in participation could be predicted by what they chose to call the act, Campbell says. A good portion of the hospices use the language of assisted suicide, not assisted death, which, Campbell says, moves it into a realm of moral and even legal judgment – as technically, assisted suicide, as opposed to what takes place under the DWDA, is still against the law in Oregon and other states.

“Here semantics really do make a difference in terms of people’s actions,” Campbell says.

Doctors’ (lack of?) involvement
When most patients take their lethal drugs and die, the prescribing physician is not around. “In only one out of every four assisted deaths, the physician will actually attend the ingestion of the medication,” Campbell says. Nonetheless, at the time of death, for the majority of cases (around 57 percent), another provider – possibly a nurse, although it’s not clear from the published data – is present. But this could be changing. From 1998 to 2009, a provider was present at death in about one-fifth of all cases. But last year, most patients – a full 60 percent – had no provider with them at the end.

“There are not many medical procedures where physicians are prescribing medication to patients of fairly significant dosage and level and so forth, in which there isn’t follow-up to see what happens,” Campbell says.

Still, because of confidentiality laws that make it hard to know what’s happening – a problem that bedevils most research in this area – it’s not clear whether this change reflects the wishes of the patients, many of whom might prefer to spend their final moments surrounded by those they love, and not a doctor.

But this could be an issue, in the rare event of side effects. Typically, before taking the barbiturates, patients need to consume an anti-emetic to make sure they hold them down. But in about 4 percent of cases, patients have vomited up the drugs. Also, in even rarer instances, patients have survived the dosage. Since the program started, three patients have awakened after ingesting the medication between 24 and 88 hours later. All three later died of their illnesses, between five days and three months later, according to Oregon’s health department.

Where doctors stand
Nationwide, such polls as there are show doctors are pretty split on the matter. In a Medscape survey of 7,000 doctors last year, 46 percent of doctors supported physician-assisted suicide in some cases, and 41 percent opposed it (the rest said, “It depends.”). In this, doctors are close to the general public. A 2006 poll by the Pew Research Center found the public evenly split, with 46 percent approving, and 45 percent opposing, assisted-suicide laws.

Doctors might be divided, but medical societies are less so and overall tend to oppose it. The American Medical Association, the country’s biggest doctors’ organization which represents under one-third of U.S. physicians, is quite succinct about the topic. “Physician assisted suicide is fundamentally inconsistent with the physician's professional role,” the group says in its guidelines.

The American College of Physicians, which also opposes the DWDA, worries it could ruin the doctor-physician relationship.

“There’s a fear that physicians and patients may lose trust with each other if physicians are seen to be helping in this way,” says ACP president-elect Dr. Virginia Hood, who practices in Vermont, a state now debating its own assisted-suicide ballot measure.

But Hood was quick to point out that ACP’s members have not reached a consensus on the issue, and that there’s no way for the society to enforce its opposition. Participating with the law is still up, ultimately, to the conscience of the individual practitioner.

Jack Kevorkian, the controversial euthanasia champion, who recently served eight years in jail for helping Thomas Youk commit suicide, believes the medical societies are blinded by their allegiance to what he calls “eccentric Pythagorean dicta.”

That is, they are stuck following the precepts contained within the Hippocratic Oath. The oath is attributed to the ancient Greek healer Hippocrates (460-370 B.C.), the so-called father of medicine, although some scholars believe it actually comes from the school of Pythagoras, the famous mathematician and philosopher who thought it was immoral to eat beans.

This oath, in the incarnation handed down to us, does take a fairly hard “right-to-life” ethic: “I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly, Ludwig Edelstein’s translation reads: “I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.”

But except for one school in New York, doctors don’t actually take the Hippocratic Oath. Often, they take a modified World Medical Council-developed oath, called the Declaration of Geneva, that enjoins the budding physicians not to do harm, but is vague about what constitutes harm. And unlike the Hippocratic Oath, all mention of not giving deadly drugs – or performing abortions – is out.

Kevorkian might be wrong that the reluctance of physicians groups to support the act derives from their holding to the teachings of a long-dead, pre-scientific figure shrouded in myth. But sometimes the medical society “dicta” seem like they’re not as wed to patient autonomy as they could be.
For instance, the AMA advises that requests “for physician-assisted suicide should be a signal to the physician that the patient's needs are unmet and further evaluation to identify the elements contributing to the patient's suffering is necessary.”

Finding ways to relieve the patient’s misery is noble and good. But is asking for physician-assisted suicide really a signal for the physician to do that or simply a straightforward request for a barbiturates script? And as Oregon’s figures show, suffering does not, in fact, top the list of reasons for going through with the procedure – loss of autonomy does (91 percent), followed by the inability to engage in normal life activities (88 percent) and loss of dignity (84 percent). (Fear of pain is way down at 21 percent.) And the Oregon Hospice Association’s Jaques says these numbers make sense when you look at the sort of people who choose to take a lethal dose.

“Again, if you look at the data – the demographics who use the Death with Dignity Act – it tends to be well-educated, older, more men than women, and men that have cancer. The profile when you look at the individual who uses the Death with Dignity, they are the quintessential, independent Oregonians who have been in control over their own lives, who have been in the driver’s seat,” she says.

And recall that many more patients get a prescription than use it – again suggesting that the real issue is control. Some patients, it would seem, like to have a bottle around, just in case, so they can approach the end on their own terms. Something like this was once got at by the comedian Bill Maher, when he gave his reason for supporting physician-assisted suicide. As he once put it in a routine, “it’s man’s way of saying to God, you can’t fire me. I quit.”