The new health care bill of rights: making it stick
Do we need Congress to pass a law to enforce new consumer protections—and who should pay?
From the January 1998 ACP Observer, copyright © 1998 by the American College of Physicians.
By Deborah Gesensway
Following the release this fall of the Consumer Bill of Rights and Responsibilities, which lays out basic consumer protections for patients with health insurance, battle lines are forming in Congress about whether these quality standards should be enacted into law.
"These rights are not self-enforcing and there clearly is a role for federal law," said Michael Werner, JD, the College's Counsel for Health Policy, explaining ACP's support of the Bill of Rights. "There is going to be a lot of action on Capitol Hill, and it's going to revolve around how these rights should be enforced and how much they will cost."
While the College does not have any estimates of how much enforcing these rights will add to the cost of health care, Mr. Werner said that there are expenses connected to ignoring the issue.
"What's important here is that there is now a detailed list of things that patients can expect and have the right to, Mr. Werner said, but in exchange, patients have some responsibilities."
The Advisory Commission on Consumer Protection and Quality in the Health Care Industry, which President Clinton appointed last spring, delineated seven principles in November. They include rights to information, confidentiality, respect and non-discrimination, choice of providers and plans, access to emergency services, participation in treatment decisions, and complaints and appeals. The eighth point in the document lists 13 responsibilities of consumers in the health care system and concludes that patients should exercise and avoid smoking. (See A look at the proposed patient rights for more details.)
Mr. Werner noted that doctors will applaud rights like the ban on gag clauses, protection against health plans that seek retribution against physicians who advocate on behalf of patients, and the commission's statements that patients should take responsibility for their own health and medical decision-making.
The commission includes 34 people, including two ACP leaders: Immediate Past President Christine K. Cassel, MACP, and College Regent Risa J. Lavizzo-Mourey, FACP. There are also representatives from the business community, consumer groups, unions, health plans and insurance companies on the panel.
"It was really in some ways a group that was set up to be able to agree on nothing," Dr. Cassel said. "The fact that we could agree on this much is a very strong statement."
Some important potential rights did not make the list, Dr. Cassel explained, because the commission could not reach a consensus. Those issues included: consumers' right to a minimum benefits package, their right to a national ombudsman service to resolve insurance problems, their right to participate in clinical trials, and the need to eliminate lifetime caps on benefits.
According to Dr. Cassel, the debate has been steeped in worries about costs. "The concern was about cost to the employer and the risk that if we made the rights too expensive for employers, it would increase the number of uninsured people," she said. "We're never going to be able to have perfect consumer rights or quality measures if we don't address the problem of uninsured people."
In the preamble to its bill of rights, the commission concluded that the best consumer protection was health coverage. "A health care system that leaves more than 41 million Americans without health coverage cannot adequately protect the rights of consumers and their families," it stated.
The commission itself did not specifically recommend how its bill of rights should be implemented or enforced. It did, however, explain that the rights could be achieved in several ways, including voluntary actions by health plans, purchasers, facilities and providers; accreditation processes; and state or federal legislation or regulation.
Dr. Cassel noted that the commission's work is not finished. Still to come are reports on how to deal with measuring and documenting quality in health care and how to create systems that strive to continuously improve quality.
Nonetheless, the real strength of the bill of rights is that it is "a good first step toward restoring confidence of consumers who in many cases have been losing confidence in the current health care system," said commission member Ron Pollack, who is also executive director of Families USA, a long-time advocate for low-income Americans. "It is designed to temper the potential incentives for denying care that is necessary, and it empowers both consumers and physicians to assert their own judgment as to what care is needed."
Mr. Werner said that in addition to the bill of rights, there are a number of patient protection bills, including one by Sen. Jim. M. Jeffords (R-Vt.) that the College has testified in favor of.
A look at the proposed patient rights
The following is a summary of provisions in the Consumer Bill of Rights and Responsibilities. For the full text of the document, go to www.hcqualitycommission.gov/cborr/consbill.htm on the Web.
1. Information Disclosure. Consumers have the right to receive "accurate, easily understood information" and help making informed health care decisions. This includes information about physician education and board certification, experience performing certain procedures and consumer satisfaction rates.
2. Choice of providers and plans. All health plans should have a network large enough "to assure that all covered services will be accessible without unreasonable delay." It includes access to gynecologists and certified nurse midwives for "routine and preventative women's health care services."
3. Access to emergency services. Health plans should pay for emergency care "when a consumer presents to an emergency department with acute symptoms of sufficient severity—including severe pain—such that a 'prudent layperson' could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy."
4. Participation in treatment decisions. Physicians and other health care professionals should discuss all treatment options, including the option of no treatment at all, discuss the use of advance directives and abide by the decisions made by their patients. Health plans also should disclose to consumers facts that could influence advice or treatment decisions, such as methods of compensation or ownership of health care facilities. They also should not have "gag clauses" in their provider contracts and should be prohibited from penalizing or seeking retribution against health care professionals who advocate on behalf of their patients.
5. Respect and nondiscrimination. Discrimination in the delivery of health care or in the marketing and enrollment practices of a health plan should be forbidden on the basis of race, ethnicity, national origin, religion, sex, age, mental or physical disability, sexual orientation, genetic information or source of payment.
6. Confidentiality of health information. Consumers have the right to communicate with health care providers in confidence, and to have the confidentiality of their health care information protected.
7. Complaints and appeals. Consumers have a right to a "fair and efficient process for resolving differences" with health plans or providers, including "a rigorous system of internal review and an independent system of external review".
8. Consumer responsibilities. Consumers should be encouraged to take responsibility for their health and exercise, avoid smoking and eat a healthy diet. Consumers also have the responsibility to become involved in making health care decisions, to carry out agreed-upon treatment plans, and to recognize the reality of risks and limits of the science of medical care and the human fallibility of the health care professional.
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