State and federal governments have always been deeply involved in U.S. healthcare, paying a huge portion of the nation's $1.5 trillion medical bill. Now, however, in the wake of a flurry of legislative activity over the last two weeks, critics are questioning whether government has crossed the line into personal medical decisions with three controversial measures that could leave a lasting imprint on physicians, patients and hospitals.
On Capitol Hill, the U.S. Senate resurrected the divisive debate over so-called partial-birth abortion, passing a bill to ban the procedure. On that same day in Florida, Gov. Jeb Bush ordered doctors to resume life support for a brain-damaged 39-year-old woman after lawmakers approved a measure granting him executive power to intervene in the longstanding right-to-die case. One week earlier, grappling with another contentious healthcare issue, the U.S. Senate voted unanimously--95-0--to prohibit genetic testing by insurers.
Together, the three headline-grabbing initiatives focused renewed attention on a public policy debate that has raged more intensely than ever in recent years: When does government intervention become government intrusion, and at what point do lawmakers have the right to overrule the wishes of patients and their providers?
Hospitals and physicians, already wrestling with a mountain of intricate federal regulations and government paperwork, should be deeply alarmed by this heightened legislative activity, said David Nash, an internist and health policy expert at Jefferson Medical College at Thomas Jefferson University in Philadelphia.
"Speaking personally, as a physician, it seems to me that a good deal of this is unwarranted government intervention," Nash said. "It's sad to me that there seems to be such a dwindling respect for the doctor-patient relationship that we are effectively trying to legislate components of that relationship."
What's more, he said, the recent jump in legislative-medical activity does not bode well for hospitals either. "Certainly," Nash said, "it represents an ominous trend for hospitals in terms of greater government scrutiny and involvement in areas where the government's energies could be better spent. Where, for instance, is all the energy in patient safety and improving quality? Let's focus on that--all of this other stuff is a sideshow."
Bioethicists and consumer advocates also have expressed concerns about this trend, suggesting that federal and state officials have overstepped the "delicate line" between involvement and intrusion, said Arthur Levin, director of the Center for Medical Consumers, a nonpartisan advocacy group in New York. The "politicization" of healthcare, which began with a controversy last year over conservative litmus tests in federal appointments to scientific panels and advisory boards, is now in full bloom, he said.
"Everybody is entitled to their own personal beliefs on these very complicated issues," Levin said. "But is it correct to seek solutions through imposing one set of beliefs on everyone through new laws, or the actions of government? That's the big constitutional issue.
"The question is, where does it stop?" he asked. "I think what we're seeing, once again, is the Bush administration and other conservatives mixing religion, personal beliefs, science and politics. And that's not the way it's supposed to work."
Yet others, including conservative organizations, have applauded the new laws, arguing that the government's principal role is to safeguard its citizens. Indeed, when the partial-birth abortion ban was passed on the same day Gov. Bush ordered life support restored for Terri Schiavo last week, the conservative Washington-based Family Research Council released a celebratory statement declaring, "Today is a monumental day for the sanctity of human life."
In an interview, Pia de Solenni, the research council's director of life and women's issues, discounted concerns that the government is overstepping its boundaries and usurping the role of physicians in healthcare.
"I think that sometimes we need government to shape decisions," she said. "Let's not forget that the courts are part of the government. And it was the courts that passed Roe v. Wade 30 years ago. If you want to talk about this legislative aspect, the legislative branch is getting more and more involved in healthcare because there's mayhem in the courts.
"Medicine has traditionally been health-giving, or life-sustaining. It's not something that takes life away. Given the shift in medicine, it's absolutely necessary that the government get involved," she said.
Richard Wade, spokesman for the American Hospital Association in Washington, said he has learned over many years in healthcare that the public is "very uncomfortable over the government intruding in the running of the healthcare system in any way."
Other hospital officials don't quarrel with the government's right to intervene in complicated cases like Shiavo's, but acknowledge that it is extremely difficult to determine when elected officials have crossed some kind of an imaginary line involving how healthcare is provided to patients.
"For legislators looking to uphold the interest of the public, it's a fine, fine line," said Richard Morrison, regional vice president of government and community relations for Florida Hospital, the largest not-for-profit in the state with 17 facilities. "There's no clearly articulated public policy and no clearly articulated consensus on these issues. And so someone has to step up to bat. And that's what you're seeing, I think. And I think what this will lead to is a real, substantive debate about exactly where those lines are."
William Golden, chairman of the Committee on Ethics and Human Rights for the Philadelphia-based American College of Physicians, said, "We are concerned when clinical care is being decided by government agencies.
"The government should not get involved in making decisions about the use of specific, accepted medical procedures--that should be between the patient and the physician."
The government's revived focus on healthcare began about two weeks ago, when the Senate passed a measure that would prohibit insurance companies from using genetic information to refuse coverage or set premiums for policyholders. With Republicans and Democrats alike hailing the measure as a victory for civil rights, it was by far the least controversial of the three legislative forays into medical issues. The bill now moves to the House, which may not take up the issue until next year.
Despite broad bipartisan support, the legislation triggered concerns from the health insurance industry that the ban would create "costly and unnecessary regulatory burdens without, in any way, improving consumer protection," said Donald Young, outgoing president of the Washington-based Health Insurance Association of America, which last week completed its merger with the American Association of Health Plans.
"Current federal law already provides plenty of security to consumers," he said.
The merged group, now known as AAHP/HIAA, released a directive in November 2002 supporting existing laws that prohibit employers and their group health insurers from refusing to provide coverage based on the health status of an individual employee or family member. The statement calls for "appropriate" genetic testing that provides information that may positively affect the course of an individual's treatment.
Susan Pisano, a spokeswoman for the group, said the AAHP/HIAA supports "using this information in a way that works to the advantage of people. This had not been an issue because of various other rules, regulations, etc. We think it is very important to use those tests for good purposes."
The partial-birth abortion law, vetoed twice by President Clinton, generated far more controversy than genetic testing, prompting renewed concerns about government entering into the personal healthcare decisions between a physician and a patient. The legislation, which provides for criminal penalties of up to two years in prison, was opposed by the Washington-based American College of Obstetricians and Gynecologists, which released a statement saying that "the patient and the physician--not legislators--are the appropriate parties to determine the best method of treatment" in reproductive health.
"Any legislation that regulates particular medical practices is fraught with risk," said Kenneth Goodman, director of the University of Miami's Bioethics Program in Coral Gables, Fla. "Doctors are saying, 'Well, great, it's hard enough to practice medicine these days, but now we've got the Legislature looking over my shoulder."
In Florida, national attention was focused squarely on Schiavo, the comatose woman at the forefront of a debate on end-of-life issues. Despite three court decisions over the last five years upholding her husband's contention that she did not want to live by artificial means, the state Legislature passed a law that allowed Gov. Bush to order the reinsertion of Schiavo's feeding tube on Oct. 21, seven days after it had been removed. A court challenge by her husband, Michael Schiavo, is pending.
Louise Cleary, a spokeswoman for the Hospice of the Florida Suncoast in Largo, which operates the hospice where Schiavo is being cared for, said officials aren't prepared to discuss the case or the larger policy implications of government involvement in healthcare. "Anything we say right now might be applied to our patient," she said. The issue has become increasingly sensitive for many healthcare executives. Two religious groups--SSM Health Care in St. Louis, which operates 18 Catholic hospitals, and the New York-based Catholic Health Association, which represents more than 2,000 not-for-profit systems, facilities and health plans--did not provide experts or ethicists to comment on the potential ramifications of government policies and regulations on the healthcare industry.
Hasty action wins high praise
In the Schiavo case, the hasty action by the Florida Legislature and the state's pro-life governor won high praise from Jay Sekulow, chief counsel of the American Center for Law and Justice, a public interest law firm that supports the pro-life movement and conservative causes. Asked to respond to critics who say the Legislature intruded on a personal medical decision, he replied, "Absolutely not. To the contrary, it's the government recognizing that there are certain values placed on a human life, and we don't let it be decided by the whim of one judge."
In both the Florida end-of-life case and the partial-birth abortion measure, Sekulow said, government has a "compelling and even overriding interest in protecting human life" and helping to guide the operation of the nation's system of healthcare.
"Government also regulates drunken driving," he said. "Government regulates crime. Government has a role to play in protecting human life."
Some legal experts, however, believe the new Florida law runs counter to a landmark U.S. Supreme Court case involving Nancy Cruzan in 1990, when justices ruled that the woman's feeding tube could be removed if convincing evidence was presented that she wanted to die.
Critics say, the Schiavo case is a textbook example of government intrusion in a public policy debate involving healthcare.
"When a legislature or an executive says, 'We're not going to have a debate that we ought to have,' that is the death of policy in an open society," Goodman said.
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, described the extraordinary action as "unconscionable and certainly unconstitutional," establishing a precedent that could have implications on many more individuals than Schiavo.
"It's a recipe for chaos," he said. "It's unprecedented in terms of boneheaded intervention by government."
Goodman, a nationally recognized bioethicist, said those three healthcare issues--genetic testing, late-term abortions and the right-to-die controversy in his own state--help underscore the debate over the limits of government involvement in determining what is best for its citizens.
"This really opens up the opportunity to ask: What is the proper role of government in healthcare?" Goodman said. "We want government to protect us from discrimination, and that's a legitimate role. So the genetic legislation seemed to be right on point. On the other hand, the other two issues are government interference in the practice of medicine. I know many doctors who are very anti-abortion, who ask me, 'How can they regulate one particular medical procedure?' What this does is put Congress right between the doctor and the patient."
Not all doctors are repelled by the government's involvement in these hot-button issues. Jane Orient, an internist who is executive director of the Tucson, Ariz.-based Association of American Physicians and Surgeons, a libertarian-leaning group of about 4,000 physicians that typically opposes government involvement of any kind, argued that neither abortion nor euthanasia are medical procedures.
"I guess we need to define 'government involvement,' " she said. "In Florida, we have the state ordering that a patient be saved from being starved to death. And partial-birth abortion is not a medical procedure. That's killing a baby by a very gruesome method. We're very much in favor of keeping the government out of medicine. But the government does have the duty of protecting our rights."
Some observers believe that the partial-birth abortion ban is just the first step in an aggressive effort by pro-life advocates to overturn the landmark U.S. Supreme Court decision in Roe v. Wade. The American Civil Liberties Union will challenge the late-term abortion legislation, which President Bush is expected to sign. Three years ago, the Supreme Court overturned a similar law in Nebraska.
The push for a ban on late-term abortions and the end-of-life controversy in Florida are just two instances of the Bush administration's conservative tilt on issues involving both personal medical decisions and overall health and scientific policy, according to Louise Melling, director of the Reproductive Freedom Project at the ACLU's national headquarters in New York.
"There's tremendous concern that the government is playing politics and inserting itself in medical decisions," Melling said. "I think the effort to push an ideological agenda, even in the realm of individual medical decisions, has been a steady theme of the Bush administration."
She criticized the administration for attempting to appease its political supporters on the religious right by allegedly packing scientific advisory panels with conservatives who oppose abortion and stem-cell research, among other issues on the Republican party agenda. A report by Rep. Henry Waxman (D-Calif.) provides a long list of allegedly politically driven manipulations of supposedly objective scientific inquiry involving everything from the Environmental Protection Agency to the National Cancer Institute. The White House did not respond to a request for comment.
Jeb Bush, the president's brother, intervened in another controversial case that attracted considerable attention earlier this year. He asked a judge in Orlando to appoint a guardian for the fetus of a severely retarded 23-year-old woman who was raped while in a state-licensed group home. Circuit Judge Lawrence Kirkwood refused, issuing a court order that berated state officials and the "executive branch" for trying to exploit the victim for a national debate over abortion and fetal rights. The 5th District Court of Appeals in Daytona Beach, Fla., has not yet ruled on the matter.
Caplan said the cumulative impact of all this recent government involvement in healthcare should set off alarm bells throughout medicine.
"It's pure politics and pandering," he said. "You've got politicians blundering into all the wrong places--the bedside, the clinic, the doctor's office. Legislators and politicians are involving themselves in use of technologies and issues that they just don't understand. And having people who don't know what's going on setting the rules is not a very good idea."
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