Hyde-Nickles bill defeated in Congress

Co-sponsor vows to try again

End-of-life and pain management advocates are celebrating — at least this year — the defeat of a bill that would have harnessed the enforcement power of the U.S. Drug Enforcement Administration to investigate and punish physicians and pharmacists suspected of participating in legalized physician-assisted suicide.

On Oct. 14, Senate sponsor Don Nickles (R-OK) abandoned his effort to attach the Lethal Drug Abuse Prevention Act to the omnibus spending bill, which was approved by Congress the following week. Sen. Ron Wyden (D-OR) had announced on the floor his intention to filibuster the entire spending bill, if necessary, to prevent a backdoor enactment of Nickles’ bill.

House sponsor Rep. Henry Hyde (R-IL) previously had withdrawn the House version of the bill before it could come up for a floor vote. Nickles vowed to "pursue the matter next year," while opponents of the bill, including the Na-tional Hospice Organization (NHO) in Arling-ton, VA, and the American Medical Association in Chicago, pledged to seek alternative measures that better address the real needs and suffering of dying patients.

Right-to-life advocates had pushed the Hyde-Nickles bill as a litmus test for the conservative agenda and a way to overturn the twice-passed Oregon Measure 16, which legalizes physician-assisted suicide. End-of-life care and pain specialists, including many who long have been opposed to assisted suicide, argued that the bill would have an unintended chilling effect on the prescribing of controlled substances for legitimate pain management, mainly because of doctors’ well established fears of government scrutiny.

A coalition of 52 health care organizations, led by NHO, rallied the end-of-life community’s opposition to the bill.

"I was heartened by the response by the hospice community in educating the members of Congress on this issue," says John Giglio, NHO’s director of public policy and general counsel. "This helped elevate the debate on the underlying causes of assisted suicide, including the undertreatment of pain and the inability of many Americans to access appropriate end-of-life care. As a result, the palliative care community has a tremendous opportunity to advance the dialogue with Congress on how to improve care of the dying," Giglio explains.

NHO is examining its next steps and hopes to work with other end-of-life groups to define legislative proposals. "If they have bipartisan support, there’s a good chance Congress will consider them," he adds.

Leaders call for action

Joanne Lynn, MD, founder of Washington, DC-based Americans for Better Care of the Dying and another leader in the fight against Hyde-Nickles, urges health care providers to "let us and NHO have their input on what kind of Congressional action they would like to see to improve end-of-life care. A lot of people on the Hill are interested in what they could do for the plight of dying patients, such as research studies or demonstration projects," Lynn says, although creation of new end-of-life medical benefits is less likely in the short run. "At least we’ve got to have some goals in mind."

In the wake of Hyde-Nickles defeat, some palliative care leaders have wondered whether the vehemence with which the end-of-life movement pushed suggests the danger of partnering with that movement. One of the concerned leaders is Ira Byock, MD, past president of the Reston,VA-based American Association of Hospice and Palliative Medicine and author of Dying Well: The Prospect for Growth at the End of Life, (published in 1997 by Riverhead Books, New York).

In a Sept. 30 editorial in the Portland Oregonian newspaper, Byock accused Hyde-Nickles boosters of trying to incite a new civil war similar to the abortion debate by escalating the assisted suicide debate "to a dangerous new level of conflict, while doing nothing to alleviate the suffering of dying patients. At a time when consensus building and constructive legislation is urgently needed — and would likely succeed — the bill’s backers have chosen instead to wag a moral finger at America," he writes.

In a subsequent interview with Medical Ethics Advisor, Byock labels the Hyde-Nickles effort "disgraceful" and adds, "We have learned that a small but powerful faction within the right-to-live movement is really more interested in moralizing than in alleviating suffering."

If right-to-lifers were truly interested in relieving suffering and reducing patient demand for assisted suicide, he says, they would "use the power of the congregations and parishes to declare a social right to die in comfort in a clean, dry bed. Instead, some right-to-life zealots seem willing to work with those of us in the caring community only to the extent that it advances their own, self-righteous political agenda."

Strange bedfellows

Lynn, who was a target of attack by Hyde-Nickles advocates, says "the things that separate us are still pretty small. Just like politics makes strange bedfellows, sometimes it makes strange opponents." The battle over the Hyde-Nickles bill, she suggests, "was just an honest difference of opinion over whether something would work or whether it was important to do for symbolic reasons."

NHO’s Giglio adds that advocates for the Hyde-Nickles bill "were not people who normally work on health issues. They literally didn’t understand or believe our objections. But I don’t think it reflects a larger trend of whether or not we should be working with right-to-lifers," he observes. "I will bet that by this time next year, Congress will be considering a bill that the health community will be able to support."

According to the Oct. 20, 1998, Hospice News Network electronic newsletter, Oklahoma State Hospice Association (OSHA) president Steven Edwards says he hopes "we can work together with Senator Nickles next year to accomplish common goals that also won’t hurt cancer patients and the terminally ill."

Meanwhile, an attempt to shift the assisted- suicide debate to Michigan with a proposal called Proposal B failed in the Nov. 3 election. Placed on the ballot by a group called Merian’s Friends, the initiative was defeated nearly 3-1, but neither side says the issue is over.

The group is named for Merian Frederick, a Michigan amyotrophic lateral sclerosis (ALS) patient who committed suicide in 1993 with the assistance of Jack Kevorkian. Many in Merian’s Friends want to bring the issue back, perhaps in another four years, says Bob Moreillion, former campaign manager for the group.

The proposal resembles Oregon Measure 16, the first state law to legalize assisted suicide, and it includes such safeguards as psychiatric determination, seven-day waiting period, and certification from two physicians that the person has less than six months to live before a patient could receive assisted suicide.

Merian’s Friends gathered 250,000 signatures to get the proposal on the ballot but had few resources left to purchase political advertising. Opponents spent between $5 million and $6 million on television ads to defeat Proposal B.

Ironically, Kevorkian, who claims to have helped more than 120 suffering patients end their lives, urged voters to defeat Proposal B because of its "stifling bureaucratic red tape."

Kevorkian’s flamboyant attorney, Geoffrey Fieger, was the Democratic nominee for Governor of Michigan on this year’s ballot. He lost to incumbent John Engler, a staunch opponent of assisted suicide. Earlier this year Engler signed a new law, effective Aug. 1, outlawing assisted suicide and targeting Kevorkian’s activities.

Could have been easier

Background on the story of Merian Frederick is contained in an article by her daughter Carol Poenish of Northville, MI, in the Oct. 1 New England Journal of Medicine. Frederick received hospice care during her final months of life, but the hospice did not know that she also was receiving visits from Kevorkian, Poenish writes.

"It had to be done in secret — in a back alley. I realized after Mom’s death that many of the hardest aspects would have been eliminated if the choice she made had been legal. We wouldn’t have had to be so secretive; we might have had help in coming together sooner as a family, and we wouldn’t have had to go to Jack Kevorkian."

Against this backdrop, a number of health associations such as the Michigan Health and Hospitals Association, the Michigan Hospice Organization, and the Michigan State Medical Society, all based in Lansing, have joined with the state’s Department of Community Health in East Lansing in a program called the Circle of Light.

The first step for this group, which advocates palliative or comfort care as a positive alternative for the critically ill, is to educate health professionals about new developments in palliative medicine. The project also is distributing state-wide ads with information about advance planning, a toll-free number for the Michigan Circle of Life Information Center, material on hospice and related issues, and a CD-ROM with patient information on cancer pain management.

In a related development, a new survey published in the Oct. 1 New England Journal Medicine1 indicates that slightly more than half of patients with Frederick’s disease, ALS, agreed with this statement: "Under some circumstances, I would consider taking a prescription for a medicine whose sole purpose was to end my life." In fact, 44% said they would request such a prescription from their doctor if it were legal.

Reference

1. Ganzini L, Johnson WS, et al. Attitudes of patients with amyotrophic lateral sclerosis and their care givers toward assisted suicide. N Engl J Med 1998; 339:967-73.